The Fibro Fight

The MJ experience.

2011-03-26T03:41:00.003-04:00

I've been asked in emails and on the blog about my Marijuana experience and I've been avoiding the answer because I'm not at a point to give a definitive answer.

That, and I have been relatively busy and kept forgetting. ::grins:: Sorry ladies! I'm a dope.

Instead of wait until I have all the answers, I figure I might as well bring you all along on my journey, such as it is.

The question I get most often is whether or not MJ works for my symptoms. And I have to answer honestly. I don't know.

It's been since September of 2010! How can I not know anything more? LOL Well, I'll tell you.

The only MJ I've had is crap that's scraped from the bottom of a baggie housing homegrown illegal yuck. Did it help me fall asleep? Yup! But I also freaked out and had a panic attack the first time. That didn't work out so well. The next few times I tried less, and that worked better but I still had a migraine and pain. The stuff just wasn't strong enough.

I made the call, excited to get started in the process of getting medical grade stuff. I made an appointment with a doctor through a service that puts patients with Doctors who will look over their symptoms, determine if they are candidates and then "prescribes" the medical marijuana. Sounds perfect.

I go to the doctor's office with my 200.00 and I even went to my general doctor to get a copy of my medical records.

Sitting in the lobby, I answered page after page of information about my health. Extensive. To the point where, the potheads sitting next to me, couldn't figure out how to fill some of it out. I had to smile. But then I frowned, wondering if I would be that dumb once I started to self medicate with MJ.

Doesn't matter. I can't take the narcotics anymore. If I get a little more dumb, so be it! Anything to get rid of the migraines and the depression and pain.

After a forty minute wait, I'm called into the doctor's office and he makes a copy of my ID. He photo copies two pieces of paper for me, and highlights what I need to fill in for the state.

Then he asks me for the money. I hand over the 200.00 and ask him what I do next. He tells me to choose a caregiver.

Well what's that? You're not a caregiver? I ask.

A grower. Someone who supplies the weed.

Okay, so how do I find one?

The doctor tells me he knows a guy. I'm not making this up! lol Maybe this is just how things are done, right?

So he takes down my number to give to his "guy" and I ask what kind of MJ I need and he told me to do research on the internet and find someone who grows what I need.

...

Oh, and he mentions I'll need an additional 100.00.

What for?

The state's fee. I'll need to mail the check with the paperwork. Now I should mention just how long it took me to get together 200.00. I didn't have an extra 100.00. I still don't have it! lol

So my copy of my ID sits here, wrinkled and ripped with as many times as it's been pushed around my room, awaiting the day I get 100.00 together.

To be clear, I paid 200.00 to fill out a bunch of paperwork, and get this MD's stamp on my paper. He reassured me though, if I were denied, he'd continue to make copies for me free of charge to try again.

I learned more on the Michigan Medical Marijuana forums than I did paying 200.00 to this so-called doctor.

Online I learned that there are different types of MJ for different symptoms. Patients who tried them even report what works best for them and for which ailment.

The bad news? I have no idea who grows the type, and when I do find a "caregiver" they're booked with patients, as one caregiver can only have up to ten patients or some such. I can grow my own...but I don't know how...and I can learn, but can't afford the equipment.

Am I frustrated? Most definitely. The laws are primitive and seem to only be specific when it's highly inconvenient.

For now, until I get some extra cash--not living from paycheck to paycheck, I'm going back to my neuro in hopes that he'll prescribe me oxygen. I've heard that can be good for migraines.

As soon as I can, I'll write up so more stuff on Medical MJ for Fibro, including some things that I've heard about MJ upping the chance for mental issues. But first, I want to do more research and find out what is truth and what is rumor. I know the prescription drug community isn't happy with the legalization of MJ, so who is to say about these "new studies". First I want to find out who sponsored them.

Like always, my friends and fibromates, take care of yourselves.
Gin

Medical Marijuana Alternative

2010-09-21T00:23:00.002-04:00

As I jump through some strange hoops to find relief for my fall allergies/fibro flare-ups, I'm brought face to face with one of the last few things I've yet to try. Marijuana.

My fears? I'm a writer. I don't want to be out of my mind or sluggish, hungry, and kinda dumb. But the migraine's get so bad, I'd take all of that for a few hours of relief.

So here I am, clutching my Medical Marijuana send-off package with my 100.00 pay off check (I feel I should get a discount on) and ready to take the plunge. I'm also going back to my neurologist to see about these strange head twinges I get at night and to try pure oxygen to see if that can break 7 day migraines.

Pain killers simply don't work for me any more, and the side effects have now made it too dangerous for me to continue.

But there's light at the end of this tunnel I think.

Maybe I'll find Marijuana will work or maybe...just maybe the FDA will hurry along this new drug!

Here's the link:
http://io9.com/5643337/a-new-drug-that-kills-pain-like-marijuana-without-getting-you-stoned

Let's hope more of this type of medication is found to be helpful for pain sufferers of all types.

Hope you're all feeling well my friends!

Best,
Gin

National Fibromyalgia Awareness Day (Mood Swing Question)

2010-05-12T19:11:00.004-04:00

To all my Fibro Mates and their Mates and their children!

You're in my thoughts today.

I've been around blogging under a pen name, spreading the word in honor of Fibro, and I hope you all have found a way to do the same.

Today's letter comes from Francesca.

"Dear Gin,

How do you handle the mood swings with your children?"

Like many answers, this one is best solved by observing yourself. Start up a mood journal with a few simple questions at the beginning.

What medications do you take on a regular basis?
How many hours of sleep do you get and do you feel rested?
Do you take naps?

Then start documenting your days:

-How do you feel when you wake up?
-How do you feel around meals? Any foods trigger irritability? (Sugar and carbs are known to.)
-How is your pain level when you notice yourself feeling down and blue?
-How is your pain level on your upswing? (Sounds like a no brainer right? But sometimes, Fibro Mates pain DOESN'T influence their mood because we're so used to it. I've also noticed at times that I'm crankier when I'm not feeling bad pain, almost as if I expect it to be coming and I'm calmed once the familiarity of it returns.)
-What is said or done when you notice yourself get snippy?
-How do you feel before bed?

Things to keep in mind:

Medications amplify irritability.

Not on medications? How long has it been? Detox takes a while. For me, I'm not myself until I've been off narcotic pain killers for over a week, possibly more.

Lack of energy makes us more snippy, too.

Possible fixes:

-Detox. (If you're on pain medications and you just can't seem to control your outbursts, wean yourself off of you narcotics. Talk with a doctor about this before hand so that you know what to expect. You'll have trouble sleeping and severe irritability at first if you decide this is a good option for you.)

-Awareness. Once you become aware of how quickly you snap off to loved ones and friends, you have to try to run interference on yourself. Go to a bathroom and take a moment to talk yourself out of your sour moment.

-Explain. Tell your children that some of the meds you are on and/or your condition makes you say and do things you don't always mean. Also explain that it will not be an excuse for them to disregard your authority but if they feel you are being overly harsh, to talk through the issue with you.

-Find your triggers. By keeping the journal, you can find out what sets you off. For me, a big one is not being able to find something I *JUST* had in my hands. I snap.

-Find ambition. Happiness is hard to come by, so we need to find a goal in our lives that will make us happy. Something we can actually work toward. There's nothing wrong with having the goal "finding the cure for Fibro" but for your sanity, shoot lower. "I want to help someone with Fibro" or "I want to take a trip to Australia." Your ultimate goal can still be "I want to cure Fibro" as long as you have other goals to drive your ambition.

-Find Energy. With Ambition you need Energy. For me, I find energy in forced exercises (yes I have to force myself most days), acai berry supplements, B vitamin complexes, and simple determination! Try everything until you find something that gives you a little more zing to your day. Some Fibro Mates find this in their medications, but I do not.

I hope, Francesca, that you find a way to curb your mood swings, but you have to also learn to forgive yourself, too. We all snap off some times and though we feel like hell afterwards, we just have to be okay with who we are in the long run. Try to make amends, try to talk reasonably, and hope for understanding from those around you.

All my best to you and everyone,
Gin

The Sugar Rush

2010-04-16T16:43:00.002-04:00

"Hi Gin,

I noticed in the link of your archive you gave me regarding the monster list it has carb cravings on there. You mentioned you fought with this on the loop the other day and it sounded like you beat it. Can you tell me some of the stuff you did? I crave sugar and chocolate and pasta all the time and I'm afraid to develop diabetes. Do you know if thats possible?

Thanks,
Bev"

Hiya Beverly!

Thanks for coming by. I know I don't have a lot of new posts but I hope you check the archives often and feel free to ask more questions. Also, thanks for letting me post your letter. I've had so many people want to be anon lately I haven't had much material. LOL

As far as kicking the carb craving habit...I wouldn't say I've kicked it. More like...weaned from it with a few episodes of wagon jumping. (I'm not big on the term falling off the wagon, as I believe it is a decision we make and the word "falling" is a crutch that takes away personal responsibility. Kinda anal of me huh? LOL)

I grew up on noodle dishes and the like, so learning to cook things without pasta took me a while. I, too, worried about developing diabetes especially when I was gestationally diabetic while pregnant. I also had my blood drawn for a test not too long ago and my doctor actually told me to lay off the carbs and lose a few pounds. Well okay! Wake up call for me. So I set up a plan of attack...again. This isn't the first time I've tried to cut carbs but it is the first time I was specifically told to by a doctor and not by a suggestion to help Fibro.

First - slowly retract from carbs. Trying to cut them out completely will result in a wagon jump quicker than you'd anticipate AND it will give you a sense of failure which doesn't help our mentality.

Second - get yourself used to sugar substitutes. (Be careful. Some sugar substitutes can upset the belly. Try a splenda with fiber or another type of sugar sub with probiotics to, hopefully, keep from IBS issues, if you're the type that has them.) Remember to do this slowly or you're going to HATE on sugar subs. lol You may be against sugar substitutes, as the health benefits and risk are often debated. If that's the case, (and even if it isn't) start looking for products that are "less sugar" or "low sugar".

Third - Give sugar free products a shot or two. Remember, nothing is going to taste as awesome as sugar. And after a few days of low sugar/carb intake, give yourself rewards. I talk about rewarding often because I feel without a benefit at the end of the road, we might start asking "what's it all for" or thinking "I'd rather just take the risk and feel like I'm living than eat crap I hate for the rest of my days". (Both things I've been known to think. lol)

Fourth - Don't boycott all carbs. (Withdrawal!) Just work on portions. If you eat a lot of potatoes, cut your portions to half and try to eat them baked instead of fried (if that applies). If you eat noodles all the time, try to add more chicken or meat or veggies and just a little bit of pasta.

Fifth - Snacks are the bane of our existence. For me, I was a chip-hound. I LOVE chips. I switched from regular salty tater chips to tostitos. Once I was able to keep my chip craving back a little, I moved from tostitos to snacking on crunchy vegs to spinach salads. Always? Heck no. Once or twice a week I allow for a chip award. lol

Sixth - Look in healthy magazines for recipes that are sugar free but don't taste it. HOWEVER, if you are a little lazy in the kitchen like me, you can find quite a few short-cuts.

Seventh - Vitamin supplements exist that are reported to curb carb cravings. My memory is failing me but I think I tried some to a degree of success. But, taking so many vitamins can upset the tummy so I know I had to quit a few.

Okay. Those suggestions are what I gave to myself and followed.

So...what do I eat when I have a craving? This is a personal list and not meant to be much of an endorsement. lol
Sweet Tooth Fixes:

- Russel Stover's sugar free chocolate candies. (The first few bites...meh. But the overall taste does curb the chocolate craving.)
- Jell-o Sugar Free Milk Chocolate and Dark chocolate mousse. ( Lemme just say, YUM! and only 90 calories I think. Bonus!)
- Jell-o Sugar Free Strawberry Acai gelatin. (For my Weight Watcher friends it's ZERO points and 10 calories. As a bonus, it also has antioxidants and when I was eating 2 a day to curb cravings and everyone around me was getting colds... I didn't. Coincidence? Possibly but I'm thinking yay antioxidants.)
- Weight watchers Fudge or chocolate ice cream bars. (Again YUM! An excellent chocolate fix without the sugars.)

Noodle Fixes:
- Replaced potatoes with spinach salads or an extra helping of veggies.
- Switch up noodle dishes for rice. I like Basmati. Why switch from one carb to the other? To change your taste buds. It's easier to quit something you didn't grow up loving, but the rice will fill you like potatoe and noodle carbs. It's much easier to cut down on a carb you're not used to. I made basmati rice with every meal (Spring for a rice cooker for 15 bucks to make awesome rice) and then cut down my carb portion to 1/4 cup of cooked rice.

On this regiment, I lost ten pounds without adding to my exercise schedule.

As far as any type of medical proof Fibromates get diabetes because of their carb cravings, well I couldn't find any research that would support the theory but logically, if you cave in to eating a lot of sugars, you're at risk like any other.

I hope I answered your question and gave you some good stuff to try.

All my best wishes for pain-free days.
Gin

Happy Spring!

2010-03-30T13:41:00.002-04:00

A great time of the year! The snow melts here, and the weather warms to perfection. I usually grab my daughter and wander around the zoo often. We've already been once and it was a great day. One of the best I've had.

The problem was...I had to be drugged up on pain killers. I had to bring a driver, Shy's father, and he doesn't much care for the zoo. We still had a great time, no matter what, but I could definitely tell by the pounding of my head, Spring was in the air!

With season changes, so come the flares. Mine lasted about a month and I was in a pain killer haze. I really dislike pain killers but the fault was mine for needing to depend on them. I'd been forgetting to take my vitamins (as we often do) which resulted in a lack of ambition, so I didn't do much exercising either.

Spring, is the time of year to prepare for Fibro Awareness, so we need to take better care of ourselves; be preemptive! Encourage each other to keep pushing toward days where we look our doctor in the face and say, I don't need anything right now.

I know what Spring does to me. I hurt more, I get a migraine that lasts for weeks, I lose ambition and before I know it, it's halfway through summer.

Not this year!

I'm going back on Acai Berry supplements for energy, popping those vitamins, and walking the dog if it kills me! And it just might.

I plan to start my day with Yo-Plus vanilla and acai powder and granola for energy and to fill the belly. Then I'll take half my vitamins. (B-complex, Magnesium, Vitamin D, Biotin) Next I'll work out for 15-30 minutes starting with low impact exercises until I've built up my strength again. Shower and take care of my skin and hair. The rest of my day is going to be filled with writing, working, cleaning when I can, and I'm going to stay away from greasy fast food as much as possible. (Or at least count calories and carbs so I don't fall into the same pattern of overdoing.) I'm going to eat a low carb supper and maybe have a little bit of something that isn't very good for me because I deserve it for sticking with my routine. After my belly has something in it, I'll take the second half of my daily vitamins because I can't "stomach" taking them all at once. (Amino Acids, Vitamin E, Calcium{sparingly! Every three days for me. Omega 3,6,9) And at the end of the day, I'll treat my face with a calming, soothing masque and rub my body down with body butter to promote circulation and relaxation. Having a plan for taking care of yourself can work, even when we don't stick to every aspect of it (which for Fibro Mates is extremely hard). Don't beat yourself up for what you can't do in a given day. Reward yourself for doing what you can!

Remember, Fibro is a brain disorder. Our brain fights against us. It makes us depressed, it saps our inner strength and we have to fight self-defeating behaviors by not talking down to ourselves.

If you have a few days where you can't do any of the things on your list, hey...you'll get it the next day, or the next. When negativity due to Fibro takes a breath, you use that brief reprieve to get through enemy lines and take control for as long as you can hold on!

I have faith in you, my friends.

Now if you'll excuse me, I have a list to complete today! :-)

All my best wishes for pain-free days.
Gin

To My Blogging Buddies

2010-03-10T04:44:00.002-05:00

Hiya FibroMates, and Mates of Fibro Mates

Just a quick warning about a trend I've been noticing.

Foreign Pharm spammers are targeting blogs, trying to post comments that are advertisements for their business. Cheap drugs the American government doesn't allow you to have, etc.

Some of my followers have blogs of their own, reaching out toward the medical community, so I'm letting you all know that filtering responses has saved me a LOT of time.

Think about it.

Ohhh btw, I just received a few questions in my inbox this week and I'll be responding to, either privately or in a post if I can. (Have to double check anon status with both.)

All my best wishes for pain free days.
Gin

Birthday Week!

2010-01-22T00:00:00.002-05:00

It's my birthday week. And those of you who are on my Facebook friends list, know why I take a week.

I'm so forgetful that I figure I might notice my birthday more if I celebrate the week surrounding it. Hopefully, you all follow suit with this idea. It's fun and we deserve more than one day a year to celebrate ourselves and all our accomplishments. Even if the only thing we accomplish is getting out of bed. ::grins::

So enough about me. Without further ado...I'll hit the mail.

"FG,

I have IBS like you and my flares make them worse. I can't take both at the same time. Any ideas?

Barb"

I do have some ideas but really we need to find out what is causing your upset. Are you going through more stress than usual? Are you taking more medication?

I'm going to make a few assumptions here. With bad flare-ups we tend to take more pills. More pills means that our digestive tract be bombarded. There's a whole bunch of medical jargon to sift through involving liver function etc. but suffice it to say that what you're taking through your flare-up might be making your IBS worse.

I've read a bunch of reports that talk about aspirin and tylenol and other acetaminophen products playing havoc with the belly but in my case, I can trace almost every bad IBS episode (and I'm talking extremely bad...don't want to leave the house here) to ibuprofen.

Why? I have a few theories. One: I took a lot more of this medication than I should have right after my pregnancy (4 pills every four hours) and when I was first diagnosed with Fibro and advised to take a 3 pill dose every four to six hours by my doctor.

I've stated before (and I apologize if I sound like a skipping CD here) that Fibro patients are known to adapt to their medications and also to become sensitive to them. Something that never bothered us before can one day...drive us crazy, make us itch, make us feel sick...worsen our IBS.

Some things to try:

During the days of your flares...eat lighter. My favorite thing to do when I notice my stomach becoming upset is to start eating soft. I drink green tea with a bit of the splenda with fiber to try to toughen the stool but I "eat soft". Chicken noodle soup, flavored applesauce snacks with reduced sugar, basmati rice with baked chicken (the soft juicy dark meat) and some yo plus vanilla (Best yogurt EVER lol). I eat like I have Gastroenteritis again, giving my digestive tract a chance to heal while still getting to eat.

We often forget about how hard a flare-up hits the rest of our body. We baby tender muscles and joint stiffness and pain but still eat Doritos and broccoli and...for me...Taco Bell.

Give all parts of your body time to heal.

Vitamins can also be a contributing factor. Try to get liquid vitamins when you can.

Also, unless otherwise specified, try to take medication around a meal to help with digestion of pills and vitamins.

Stress is another major factor in both IBS and Fibro. Nothing new there. Find a pastime that can soothe your nerves or find something that inspires you. For me.. Planet Earth the DVD series. I'm reminded of hardships and that life...beautiful life...always moves forward. I also like to think about the saying "this too, shall pass".

Whatever you can find that brings you even a modicum of peace, use it! Bring down those stress levels and those depression bouts that we all are subjected to almost daily.

I truly wish I had a definite answer as to how to make the terrible duo of Fibro Flare and IBS go away. The day I master it, I will shout it to the world, but these tips, small as they are, have helped me.

Recap:

-give your bowels time to heal after a medication surge.
-eat soft, eat plain.
-take as little medication for flares as you can stand, and look for liquid vitamins.
-find personal inspiration to lose yourself to. Heal the mind...help the body.

Make sure you're keeping a food diary as well so you can find out if any particular foods or medications are causing your flare-ups to worsen. Food allergies can develop and attack when we least expect it.

My best to you, Barb, and the rest of my Fibro Mates.

Hope everyone is having 98% pain free days!
Gin

Blog Purpose and A Call For Help

2009-12-26T18:58:00.003-05:00

Every once in a while I get a letter that shakes me up a little.

I don't mean in a bad way, though the letter I'm referring to had decidedly bad news.

A lot of the time I get the same questions about pain, itching, IBS, prescription drugs, and vitamins that I don't always have much to say on the blog. Pretty much the archives can give out so much information that I find I don't have to post all the time.

"Here's what happens to me. It might be the same for you. Here's the newest rumors. See you next time."

My blog has a certain feel to it. Kinda homey. To me anyway. Like an aunt once comes to visit when they're looking for the same ole. LOL

I don't always keep up or run with the latest "helpful" trend. I sit back and wait to see and then post my opinion and my sources etc. I try not to complain too much about the sucktitude of Fibro because I don't see a point in it other than feeding into the depression beast that threatens all of us.

But perhaps because of my repetitive ways...some vital things fall through the cracks of my routine and bring me up short. And in my opinion...this is a very good thing. I don't want to become complacent in helping out my fellow Fibromates and their families. I don't want people to just visit the archives any more.

I want people to ask questions even if they think it's something I've gone over a hundred times. I want ...to be helpful. I need to be. Because I refuse to believe my life's worth lies in my ability to feel pain. Instead I realize that my life's worth lies in my ability to press on, to help, to become important to myself as well as to others and I hope that you all can feel that too. In yourself and in me.

I'll do my best to answer ALL questions old and new in the upcoming year to refresh the archives and create new.

Now...that being said, I want to get back to this letter I received.

The gentleman said nothing about covering his story on my blog so I won't mention any names or get overly specific. I wouldn't post anything about it all if I didn't feel it reiterated a VITAL point about my last post against a drug.

The author of the letter lives halfway around the world and he let me into his life with his email. To summarize, he and his children lost their wife and mother to a suicidal incident that may be related to Topamax.

He's looking for answers, and I want to give them to him.

So I'm calling out to my readers. I know there are lawyers out there pursuing the drug company and I want to know what proof they have that makes them feel as though they can win these cases. There has to be something or they wouldn't advertise. As I said in my November post, Lawyers don't pay good money for a commercial spot if they aren't sure they can win.

What do they know? Whatever it is... I want to know it! And I want to give it to those who can take comfort in closure. I said I was coming out against Topamax before, but now I'm coming out swinging. I've received dozens of reports from readers and read on many loops about this drug and suspected effects and allegations. So what proof is out there?

My friends, help me find it?

All my best wishes that everyone had a great holiday if you celebrate, and a healthy new year to come.
Gin

Topamax.

2009-11-27T13:34:00.002-05:00

I've been very open about my sensitivity to anti-depressants and anti-epileptics. I've also searched for the answer to my suicidal urge four years ago since my neurologist had told me Topamax couldn't be responsible.

As I sat watching TV the day before yesterday, an interesting commercial came on. Some law firm was setting up lawsuits for family members who had lost a loved one to suicide "while taking the medication Topamax for depression or migraines".

Validation at last from a reliable source. Shyster Lawyers a viable source? LOL. But think of it this way. Lawyers don't waste their time pan handling for cases they don't think they can win.

Please, my friends, be cautious, be aware.

I cannot, in good conscience, say nothing. I come out swinging against this medication.

All my best hopes for 98% pain free days for all of us.
Gin

The Pain Culprits?

2009-11-23T21:19:00.000-05:00

I've been at it again. In the last three years I've had short bouts of Fibro pain that has lasted a week, maybe two at max.

Throughout October and a decent chunk of November, I had one of the worst flare-ups I've had in a long time. I was actually bed-ridden for about 10 days with migraine after migraine and by day 3 there wasn't a single pill I could take that would do anything for me. I ended up going to the doctor on day 8, only to be told the same thing I'm always told: "Well, there's not a whole lot we can do for you given your sensitivities."

They gave me a shot of Demerol, because honestly, I would have tried anything to get rid of the pain and a steroid shot to...do whatever steroid shots do other than screw up your digestive organs.

As expected, I became physically sick. I curled up on my bed, paler than usual and certain I was going to soil my bedding in vomit. Pretty picture hm?

The next day I woke up with a mild migraine. Mild meaning I could still function but the damned thing was STILL there.

I asked my doctor previously about starting on Low Dose Naltrexone and/or medical marijuana. Now before you start thinking I'm some pot hound lemme just tell you... I'm desperate! I'm not looking forward to Marijuana, which used to make me feel more...stupid. But when I get a ten day migraine? I'll try anything!

I'm feeling great now, and have for a week or so but I've had a lot of catching up to do with manuscripts and the like.

And though the trip to the doctor's office was pointless from a treatment standpoint, it wasn't an absolute waste of time.

On the table in the waiting room, there was a magazine called Scientific American(http://www.scientificamerican.com/). In the November 2009 issue is an article in the Neuroscience section about the "New Culprits of Chronic Pain".

There's simply too much science in the article for me to be able to articulate or translate successfully. So I'm going to hit a few high points and then leave the research up to you, my friends. If you're interested in learning more.

The article is based on Chronic Pain. The subtitle reads: "Glia are nervous system caretakers whose nurturing can go too far. Taming them holds promise for alleviating pain that current medications cannot ease." By R. Douglas Fields.

Pg 50 Key Points by the Editors read as follows:
- Chronic pain that persists after an injury heals is often caused by overly excited pain-sensing neurons that signal without an external stimulus.
- Traditional pain drugs that target neural cells directly rarely quiet these abnormal pain messages because the neurons' heightened sensitivity is driven by a different type of cell called glia.
- Such cells monitor the activity of neurons and attempt to keep them healthy and functioning efficiently. But well-intentioned glial reactions to intense pain can at times prolong that pain.

Meaning...for a long time we've blamed the neurons and really they've just been forced into the pain job by the glia.

Here's another excerpt on pg 56 that might ring true with some of you as it has with me.

"A stunning discovery made in recent years is that glia play a role in causing opiate painkillers to lose effectiveness. Lina R. Watkins of the Univ. of Colorado at Boulder has demonstrated that morphine, methadone, and probably other opiates directly activate spinal cord glia, causing glial responses that counteract the drugs' painkilling effects. The activated helper cells begin behaving much as they do after nerve injury, spewing inflammatory cytokines and other factors that act to overly sensitize neurons. Watkins showed that the effect starts less than five minutes after the first drug dose.

By making neurons hyperexcitable, glial influence overcomes the normal neuron-dampening effects of the drugs, explaining why patients often require ever increasing doses to achieve pain relief. The same mechanism may also underlie the frequent failure of opiates to relieve chronic neuropathic pain when it is driven by reactive glia." R.D.F.

So what does all this jargon really mean?

I suspect more tests will be done until theory becomes fact, but if they really have discovered why we feel pain, we can become hopeful that they will find better and more efficient drugs. And of course, in this same article they cite tests that have been done and... here comes the real funny part of this entire post:

"Another existing drug, indeed an ancient pain-relieving substance that can work when many others fail, is marijuana, which has been legalized for medicinal use in some states. Substances in the marijuana plant mimic natural compounds in the brain called cannabinoids, which activate certain receptors on neurons and regulate neural signal transmission.

Two types of cannabinoid receptor occur in the brain and nervous system, however: CB1 and CB2. Activating the CB2 receptors induces the psychoactive effects of marijuana. Remarkably, the CB2 receptor that relieves pain does not appear on pain neurons; it is on glia."

Blah blah blah.. "I'm a wicked smart scientist talking a lot of jargon..." etc.

You get the point.

Another interesting part of the article: (And remember, these are just the ones I understood easily and feel okay about sharing but there is a TON of information in this issue. Try to back order it if you can.)

"Like heroin, opium and modern narcotics, such as OxyContin, morphine blunts pain by weakening communication among spinal cord neurons, thus diminishing the transmission of pain signals.

Unfortunately, the power of morphine and other narcotics to block pain quickly fades with repeated use, a property called tolerance. Stronger and more frequent doses are necessary to achieve the same effect. Patients with chronic pain can become addicts, compounding their misery with debilitating drug dependency."

Sometimes we know in our hearts that we're taking too much, too frequently and before we know it, nothing works but having nothing feels worse. This is a scary place to be.

BUT... this article is proof that we could see better, more effective, help on the horizon! This is good news, my friends.

I hope you're all well, and will excuse my lengthy absences from time to time.

All my best,
Gin

Guilty As Charged

2009-10-31T12:29:00.000-04:00

"Gin,

I was wondering if you have any thoughts on guilt and defensiveness and Fibromyalgai. A support group I'm in was talking about this recently and I thought it might be a good blog post for you.

Teresa."

First... Happy Samhain/Halloween/Candy Day. Whichever way you prefer to think of it, my friends.

Secondly... Thanks for the blog post idea.

Thirdly... Guilt. Bah! It does seem to go with Fibro like peas go with small chunks of mushy carrots.

But why?

Forget about the pain of Fibro for a moment. Strip away a bunch of the other symptoms that are common as well, such as: Fibro Fog, fatigue, skin sensitivity, sensory sensitivity, and all other secondary conditions. (In my case, Costochondritis and IBS.)

Once you peel away the layers, you're left with depression, mood swings, lack of ambition and energy, and bouts of bawling. It's quite an emotional ride. Then if you add back in everything else that we suffer... OVERLOAD!!

The problem with Fibro is the inability to fathom it. The condition is a total loss of sensory control. We laugh, we cry, we hurt, we're confused, we want to be coddled and told everything will be okay but we don't want to be cuddled or touched in the wrong places. We want people to understand...but we don't want them to say they can understand how we feel. LOL Seems a bit hypocritical, but it is what it is.

As a FibroMate we all usually have several things wrong with us every second of every day. We stand there talking to our friends or family like a normal person while in the background there's a touch of panic going on. "I'm feeling pains in my chest...I don't remember if these pains are like the usual pains I get with Fibro. Is this something new?" Meanwhile we miss half the conversation going on around us or worse, to us. People start to make assumptions about our behavior. They believe us to be self-centered and sometimes we are but only because our pain and suffering makes us think about ourselves all the time! I don't want to think about my pain but.. OW!

Also...

We want to relate to others. "Do you ever feel a stabbing pain in your earlobe," you ask someone. And their response? A strange look and a shrug. "Umm, not really, no."

"Oh," you say lamely, and chalk it up to your Fibro. Sometimes verbally...sometimes met with an eyeroll.

You know, I'm constantly trying to tell Dan what I'm going through even though I know he's probably tired of hearing it because it is important to me that someone out there, without Fibro, believes me when I talk constantly about the different types of pains and emotions and symptoms I have any given day.

I don't sleep very much, I cry at night a lot during stressful times, I wake up with chest pains or a bad knee or any number of aches and pains. Most often, I wake up with a throbbing in the back of my head that tells me I have a 50/50 chance of developing a debilitating, drug-resistant, migraine. And all of this makes me crabby a few times a day before I get hold of myself.

I want someone to recognize all I feel and the constant fight I go through just to get up in the morning, clean, work, take care of my child, exercise, and keep a smile on my face and positive outlook on life. I need someone to pat me on the back and say...good fight today trooper...and not someone who shares my way of life. I want someone who doesn't commiserate with me to say it!

But they don't.

Instead, I get what most FibroMates get, and that is slight recognition as long as I'm feeling good that day.

On the days that I'm feeling 98% pain free and mostly energetic, I'm rewarded with more smiles and more understanding then on the days when I'm at 10% and needing support the most. On those days I become Gin-the-invalid or Gin-the-drama-queen. Not verbally (though many Fibro friends of mine go through some verbal brutality) but with looks and actions.

Sometimes, Dan will sigh at me and turn his head in the same way he does with my daughter when he's lost patience or doesn't believe her. I read into that...

And THAT brings in the guilt.

I feel guilty when I lose a day to Fibro pain. I feel guilty because I try to tell myself that my lack of energy and ambition is in my head and I need to fight it, I need to push harder and not give up.

Then... I feel guilt from outside sources. A look from Dan, a disinterested grunt from my mother. Are these amplified by my self guilt? Conceived by it? Quite possibly, but it is there.

Fibromyalgia is behind the wheel or our emotions. It makes us irrational at times. We feel guilt and then we get mad for feeling it. We tell ourselves that we shouldn't have to feel guilty and our friends and family shouldn't MAKE US feel guilty.

And that brings us to defensiveness.

"If I could make him understand how it feels he would never look at me like that again. He'd never question me when I said I couldn't do something or needed him to get the child off to school. If only I could...make him understand."

One thing I have to remember is how hard it is for ME to comprehend what I'm going through. How can I expect someone outside to make sense of it? But, as I stated earlier, Fibro doesn't make us rational. We want understanding and support and when we don't get it, we fight for it.

What Non-Fibro Mates have to remember is this. Fibro Sufferers are still mostly jeered and accused of making up stories, drawing attention to ourselves, over-embellishing so we can have excuses to be lazy...and this isn't just common people saying this...they're learning it from Doctors! (If all doctors agreed and came out publicly admitting that Fibro exists, the general public would follow suit.)

Due to recent studies, the stigma is slowly... and I mean very slowly...fading. But not fast enough. Still more research is needed to convince many doctors that Fibro isn't a mental disorder. With all of the mental symptoms, it is quite common for Fibro Mates to be treated as "depressed individuals working themselves into feeling pain".

Ugh! Back to frustration. We have to fight just to be believed. "Please.. I feel pain. I need help. I need an explanation...a plan of attack! Give me something!"

But often we don't get anything. We're experimented on. We can't be understood. Can't be sympathized with. Only a few doctors in the world are fighting to understand Fibromyalgia instead of grouping it with other chronic pain diseases and wishing us luck. (And as a side note: In our struggle for just...someone to understand and help, we're the perfect targets for shysters and their BS cure-alls.)

Yes...all sorts of emotions run high with Fibro Patients from depression to guilt to defensiveness to bitterness. We feel it all, and depending on who you ask, we feel it all tenfold.

So there might be times when we feel guilt when no one is guilting us, defensive when no one is accusing us. These feelings are just another perk of Fibro but like all other symptoms...once we can learn to recognize them we can better handle on them.

Let people scoff at us, roll their eyes, disbelieve. We know how we feel and as long as we know we're fighting the good fight every day and not giving up...the rest of the world can bite it! ::grins::

Those are my thoughts...scattered as they are. LOL

As always my friends, I hope you have 98% pain free days that keep your head up and your heart firm in the belief that the future looks bright.

Best,
Gin

Doctors, Meds, Anti-Depressants, Suicidal Urges

2009-10-24T14:30:00.001-04:00

Probably one of the most frustrating things about my doctor's office is the multiple doctor effect. My choice of doctor has had two other doctors in her practice. One left, to be replaced by another. Now...my original doctor (Doc C) used to get very busy some days and her staff would schedule me for the other doctor. (Doc Z) Now Doc C and Doc Z used to have like minds for Fibro. "Tell me what you want to try." Not a perfect solution of course, but better than doctors who try to tell a Fibro patient what to try based on commercials.

When Doc Z left the practice to be replaced by Doc L, I was once again shifted to Doc L to build his client base and my "need an appointment the day I call" needs. So I met Doc L. A nice enough fellow who looked at my chart with confusion and of course I had to explain why I wasn't on Anti-depressants for Fibro. "I react badly. They call it chemical sensitivity. I don't tolerate many medicines at all. I can barely take half a vicodin for pain without itching myself to sores."

He nodded as if he had been listening but he just started asking me more questions: "Have you tried..."

The nodding game commenced and for the ones that I didn't nod to, I would ask "What type of medicine is that?"

"Oh it's a.... (anti-depressant, anti-seizural, muscle relaxer...etc.)" All of which we had just discussed my horrible reactions to.

Not to sound like an ungrateful wretch but...there seems to be a serious lack of communication. If I mention that I've had suicidal tendencies or apathy on anti-depressants and antiepileptics...that is NOT okay with me and I don't want to try any more of them. (I think six is my limit.) I can't speak for how these medications work for other conditions/diseases. But I am definitely NOT going to treat my Fibro symptoms of pain, exhaustion, and depression with a medication that "may enhance" these symptoms in addition to making me gain 40-60 pounds!!! So I'll be obese, apathetic, still tired/lazy, but I'll experience on average 15% less pain?

I'll take the pain and choose LIFE! (Disclaimer: Not all people react to anti-depressants/antiepileptic this way. No hate mail please. lol)

I've gone on Anti-Anti-Depressant rants before and many of my readers have vehemently disagreed. But let me point out a few tidbits that I don't believe I've publicized previously. (Although I might have. Thank you Fibro Fog. LOL)

-I was on anti-depressants before, so I'm not sitting from the sidelines talking about something I've never tried or experienced for a decent length of time. (I tried my first anti-depressant in 1999.)

-I had two moments of suicidal urges. Urges are different than the "what is it all for" depression. Urges are like random hiccups in depression switching you from general melancholy to instant despair. And the worse part is, that "instant despair" reacts like a light bulb. Bink! Suddenly you just know you have to kill yourself and you have the idea on how best to execute it. As reflexive as a rubber hammer to the knee, you're up and moving to fulfill the urge.

Obviously, I didn't succeed. Some people do succeed sadly, and others...survive the attempt often with scars, liver, kidney issues afterwards.

To be fair, only one of these episodes occurred when I was actively taking an anti-depressant. The other was after I had been "off" medication though I'm sorry to report that I don't have the exact amount of time I had been off drugs. So I'm going to say that it had been around six months in attempt to be fair.

The Urge while I was off medication lasted about a thirty seconds. The thought came to me. I sat back in my office chair and blinked dumbly, staring at my cork board. ("I want to stab myself.") I knew I could do it. The moment passed though and I was left wondering what the hell that feeling was all about.

The Urge while I was on medication lasted for over twelve hours followed by ten days of panic and horrible fear that it would return...the likes of which still haunts me! People ask me how long ago that happened. About 3-4 years ago. With my 1.5 year old daughter in the next room. My husband had a gun in the house, in the closet. Four steps from my bed. In four steps, I would have been dead. My phone was right beside me. I had the thought of calling Dan and telling him what I was going to do. That thought is all that saved me. ("Hi. I know where your gun is, and I'm going to use it.")

I can't remember if I handcuffed myself to the bedpost or just imagined I did. I remember thinking the cuffs were there and riding every second until someone could come and watch me. My daughter remained in her crib...I think. 2 hours later my MIL came and took care of the baby. She didn't look in on me. My husband showed up an hour later and came into the bedroom to find me clinging to the bed rail.

Which brings me to my next point.

-The impulse to kill oneself increases on medication. (That is NOT to say that NOT being on anti-depressants is any better. I refuse to call anyone who claims that A-Ds work for them a liar.) In my experience, discussions, interviews, and support loops I've noticed a trend. Those who have tried to commit suicide before being on A-Ds have a better chance of them working without the suicidal Urges.

-Finding a goal, and a reason to live is your BEST anti-depressant. Obviously, if this were an easy thing to do, A-Ds would be out of business. But if you're anything like me and you can't or won't try any more anti-depressants, this becomes your best defense. Talking yourself out of panic/anxiety by recognizing your symptoms, repeating why you have them and reminding yourself the feeling will pass is all some of us have.

Makes me wonder if those on A-Ds are doing the same thing...in pill form. They feel anxious or panicky...they take a pill and feel better in a few moments. Or...did they just convince themselves of it? (IMPORTANT WARNING: DO NOT DISCONTINUE ANTI-DEPRESSANTS. The medication reacts badly to this, and you can do more harm than good. Weaning is the best way, if you're considering going off your medication. and please, talk with your doctor if you are unsatisfied. I am not promoting a mass exodus here.)

-Anti-Depressants/Antiepileptic drugs. (I hope this link works. It is giving me issues.) http://www.fda.gov/ohrms/dockets/ac/08/slides/2008-4344s1_09_01_Trileptal%20slides.pdf

Knowing how I react (as well as other FibroMates...since we're prone to chemical sensitivity) should put you in my frame of mind at the time of my doctor visit.

When Doc L asks me to try another daily pill, swearing it isn't an anti-depressant...I still get the sweats. I've reacted poorly to everything including pain meds, migraine meds, anti-histamines, and muscle relaxers.

So I told Doc L that I want to either try medical cannabis (to which he actually gave a short chuckle) or Low Dose Naltrexone. To which I was told... "I don't see what Naltrexone would help". I gave him the Stanford doctors name and asked him to do the research but I'm willing to be he didn't. Doctors have their own lives of course, and I'm not sure I should expect a doctor who doesn't specialize in Fibromyalgia to care to research it. ....and then I thought about it. If a doctor is going to put me on meds for a condition...he/she better damned well care to research it or pass me off to someone who IS willing.

My doctor may feel the best course of action is anti-depressants or antieplieptic medication but when I say no...no means no and any doctor of mine better be ready to hand me off like a hot potato or willing to try some of the more kooky approaches because if I have another 10 day migraine where I'm told "there's nothing we can do for you" only to get a shot of Demerol that makes me sick... I just might go thug.

Luckily, Doc L did give me a prescript for Physical Therapy. I'm excited by that. Exercise is good for Fibro, but motivation is hard. Having someone to push you and work with you makes exercise easier. And it is no different than "Normals" working out at a gym so don't let the term "physical therapy" bring negativity to the process.

I think that is enough anti anti-depressant and doctor speak for today.

Remember, my friends. Be in constant control of what goes in your body. Be firm but diplomatic. We're the only ones who know how Fibro feels.

All my best hopes for 98% pain free days.
Gin

Low Dose Naltrexone

2009-10-03T21:36:00.000-04:00

The miracle drug...or so it has been called. Low Dose Naltrexone.

I waited for a while before posting about LDN because I didn't feel comfortable saying anything until I knew that the success rate for this drug was over 20%. (Which in a lot of studies is surprisingly rare for the medication some of us are taking in reference to effectiveness for Fibromyalgia treatment.)

Treatment vs. Pain Relieving.

Treating the symptoms of a condition is much different than taking a pain med and masking the symptoms. If you take a pain pill hides the pain your body is feeling. A treatment attacks and tries to fix a little deeper than that, going after the cause of the condition.

I wanted to clarify since I'm often told that "pain meds work the best for me". Yes, me too. And most of that is because of my inability to tolerate most drugs. Anti-seizure, anti-depressants, muscle relaxers...all of them make me feel funky, give me brain starts at night and one nearly made me commit suicide. No thanks!

So, I'm screwed right?

Perhaps not. Low Dose Naltrexone did really well with its Stanford pilot study.

(taken from http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=2768764&fid=4594)

Publication Details

Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study.

Younger J, Mackey S. Pain Med. 2009 May-Jun; 10 (4): 663-72

OBJECTIVE: Fibromyalgia is a chronic pain disorder that is characterized by diffuse musculoskeletal pain and sensitivity to mechanical stimulation. In this pilot clinical trial, we tested the effectiveness of low-dose naltrexone in treating the symptoms of fibromyalgia.

DESIGN: Participants completed a single-blind, crossover trial with the following time line: baseline (2 weeks), placebo (2 weeks), drug (8 weeks), and washout (2 weeks).

PATIENTS: Ten women meeting criteria for fibromyalgia and not taking an opioid medication.

INTERVENTIONS: Naltrexone, in addition to antagonizing opioid receptors on neurons, also inhibits microglia activity in the central nervous system. At low doses (4.5 mg), naltrexone may inhibit the activity of microglia and reverse central and peripheral inflammation.

OUTCOME MEASURES: Participants completed reports of symptom severity everyday, using a handheld computer. In addition, participants visited the lab every 2 weeks for tests of mechanical, heat, and cold pain sensitivity.

RESULTS: Low-dose naltrexone reduced fibromyalgia symptoms in the entire cohort, with a greater than 30% reduction of symptoms over placebo. In addition, laboratory visits showed that mechanical and heat pain thresholds were improved by the drug. Side effects (including insomnia and vivid dreams) were rare, and described as minor and transient. Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.

CONCLUSIONS: We conclude that low-dose naltrexone may be an effective, highly tolerable, and inexpensive treatment for fibromyalgia.
PubMedID: 19453963

Highly Tolerable!! Well if that doesn't spark my interest nothing will.

The drug is only needed in light doses to be effective.

It isn't a miracle drug but it is proven helpful and considering all the flops of medications I've dealt with in the past and all of the side effects?

I'll be trying this if my Fibromyalgia worsens.

My friends, my readers, my Fibro Mates, I would love to hear your stories if and when you try this medication. Good and bad because in truth this study is a "pilot study". I've been told there is a bigger study that is ongoing but I'm not sure when the results will be posted. I tried to wait but most of the emails I get these days asking things that I haven't already covered, is about LDN. So I caved under the pressure. LOL

So...until I hear anything bad, I'm going to endorse Low Dose Naltrexone based on this pilot study which was NOT ENDORSED OR FUNDED by pharmaceutical companies. Even better!

Any information and questions should be sent to my email at FibroHelper@gmail.com.

I hope you are all keeping in shape, keeping positive and having 98% pain free days!

Love,
Gin

New To Fibro

2009-10-01T23:52:00.000-04:00

"Hi Gen

I'm newly told I am Fibromyalgia. I'm thinking where to start can yuo help?"

Hiya J.

You didn't mention whether or not you wished to be anon, so I'm going to stick with just your first initial.

I would suggest that you first start keeping a journal. Jot down in a notebook as soon as you can when you first get up, how you slept, any nighttime incidents (dreams, nightmares, restless leg syndrome, Princess and the Pea syndrome, etc.) Then I want you to document your pain throughout the day. Morning, noon, evening, night. Also, write down what you're eating in detail and how your digesting it. (Are you getting gas when you eat certain foods? Stomach cramps?)

Not all Fibro sufferers have IBS (Irritable Bowel Syndrome) but I've heard a few FibroMates claim to notice flare-ups after eating something. Food allergies seem to be common with Fibro patients.

After you get your journal going, start taking some vitamins and supplements. I've compiled a good list with the aid of a few herbal remedy books. (This blogs March of 09 archive has a 3 part vitamin/herbal supplement series that can help you decide what to take based on your personal symptoms) It doesn't hurt to take doctor endorsed vitamins as well as a few herbs to see if you can keep yourself off the "big guns" (aka anti-depressants/anti-seizure/narcotic medicines HOWEVER, do not ignore your symptoms. If you need chemical meds, take them!)

Once you have vitamins pumping through your body keeping you balanced, it is time to insert some exercises which is probably one of the hardest things to do. Start slow and small. Nothing wrong with down 3 minutes a day and building up to 30 after a few years.

Those are good places to start in your treatment.

A couple of things I wanted to make mention that you can expect from your Fibro experience:

- You will fail sometimes, and that is okay.
- You have to constantly push past the negativity and find a goal for your life now. Gain focus and you will get through this.
- You will have days where you feel perfectly fine...and you will have days that you can't get out of bed. With hard work, you'll have more of the former than you will the latter and that is the greatest accomplishment.
- "You got to know when to hold 'em...know when to fold 'em." Use the journal to find a pattern or a reason for a flare up or just a reason for pain that day. Remember that FibroMates have delayed reactions to some serious pains. You might pull your arm funny while getting heavy luggage out of the overhead bin on an airplane and feel the muscle ache 3-4 days later.
- You will swing like a monkey from a tree in regards to moods. Everyone is different but we're all over-sensitive people. We hurt...a lot. Being cranky is to be expected. Make note of it, and try to keep yourself from clubbing those you love most with your bad attitudes. I personally, cry a lot. Which is sad when I think about how I used to pride myself in being a non-crier. lol
- You will be tested for everything under the sun, AND you should seek testing for everything under the sun, sometimes regularly. Fibro gives us all kinds of fictitious pain, so we have to be careful nothing serious slips beneath the radar or is attributed to Fibro.
- You will learn to survive this... It may take you a while but you will learn.

Some things you feel now, you won't even know to attribute to Fibro, so I suggest you go back to the April 09 archives and check out "The List". It's a mammoth list of Fibro symptoms that could help you determine more about yourself and the severity of your condition.

Oh and...try not to sign up for too many support groups if you can help it. Most FibroMates just want to help but as a new patient I would suggest doing a ton of research, get to what there is to know about Fibro from doctors and Fibro veterans before you start talking to the general public.

As much as I love my groups, I have to admit than when I was first struggling with understanding Fibro, I was thrown off course by well-meaning, but entirely misinformed, Fibro sufferers. (One woman in a grocery store tried to convince me that Fibro is an auto-immune disease. She claimed to have suffered most her life and to be an expert.) Just be very careful... Fibro makes it hard to love life and be positive enough without listening to a lot of misery and anger. In moderation it is good to be supportive for those having a bad day BUT too much will drive you nuts and keep you down.

I hope all of this gives you a good starting point, J. Feel free to email me with additional questions.

All my best to my friends new and old!
Gin

Frustrations!

2009-09-24T19:05:00.000-04:00

**Warning** This post has a bit of a rant tone to it, which is a symbol of my personal frustration. I apologize if the tone disturbs any of my fellow "positive-thinking Fibro Mates".

Those of us who have had Fibro for a while know the "old" frustrations well.

In the beginning when we're diagnosed we go through some self pity, followed by excuses, rounded out by days in bed where we excuse our self pity by quoting whatever info we've found online to validate our decision to "give up". "My online group has lots of women on it who say they can't get out of bed, so I'm not alone."

No, you're not alone. There are a bunch of Fibro Mates who can't get out of bed everyday...or maybe...they just won't. FACT: Most bedridden Fibro Mates have ADDITIONAL conditions that hinder their daily abilities. Another FACT: Most of the Fibro Mates I know personally have additional conditions that DO NOT hinder their daily abilities.

So where does that leave us? I think it depends on the severity. I would never tell someone with Fibro and terminal cancer to get out of bed and exercise just like I would never tell someone with "just" Fibro to stay in bed and rest until they felt better.

I've said it often in the past...we have to be HONEST with ourselves. Brutally so. Are we doing all we can to do the best for ourselves or are we letting excuses bring us down. Only the sufferer can answer that question.

I think it is clear where I stand on the issue of excuses since I feel I was once the biggest lump of excuse laying trash talkin' defeatist on the planet.

That being said I should clarify as always that pain and being bedridden isn't to be made fun of or taken lightly. I still have a good 4-5 days a month where I feel completely sapped and unable to do much of anything. Even more days out of a month I feel no ambition and I STILL make up excuses. "I'm too tired to clean house today."

BUT...those days have become the exception and the norm is me pushing through my exhaustion (no easy feat as we all know), pushing through pain (again...suck-age!) and forcing myself to write every day to get my newest book done.

It takes drive, it takes determination, and a more than a little bit of self-honesty.

So when I get a letter that basically tells me that I've ruined someones life because they exercised and pushed themselves for 10 days and felt no better (in fact felt WORSE) and they wish they never would have listened to me...I get frustrated.

Actually, I get mad. And then I get frustrated.

Having Fibromyalgia is tough. Doing a lot of research on the subject is even tougher because everyone claims different things. (This doctor says anti-depressants are key...this one diet...the next one anti-seizure medication) But there is ONE thing that everyone can agree on. Exercise helps.

Of course, exercise SUCKS for Fibro patients. We don't enjoy it. And it takes a while to see the benefits.

Why? I have a theory. Our bodies are so depleted of the "happy" brain juice that we have to fill that deficit before feeling anything positive. And of course, exercise rarely feels good for us, so it is really hard to keep going without eventually deciding (erroneously) that it is doing nothing and quitting.

Ten days...is not nearly enough. Talk to me after ten months. That's about how long it took me before I started noticing benefits. I used to have migraines 5-6 days out of a week. Now I have migraines 4-5 times a month. With physical therapy 2 times a week I was able to improve. Now I walk daily if I can manage it.

And don't be afraid to take a day off if your pain is simply too much. Just make sure it is the pain that is stopping you and not your own excuses.

On top of this letter I responded to TWO posts on two separate loops that complained of similar issues with exercising and "doing stuff" and with both I was firm. Perhaps more firm than I would have been prior to this letter. (I would love to share the letter but I always give my readers anonymity if they request it and this letter did.) All of us HAVE to make an EFFORT to get better. We don't have a choice. Well.. a good choice. The choices are to push ourselves and live our lives or to fold and let Fibro dictate what we do.

The words sound easy. "Oh just start exercising." But it isn't! Exercising with Fibro isn't for the weak. It HURTS. Gods, it hurts. There isn't a day that I exercise that I don't hurt. But there are days where I exercise where it hurts less. Of course, it took me a year to get here but I'm glad as HELL I pushed myself. I'm glad as HELL that my husband told me I wasn't worth respecting because that is what it took to get me off my butt ... I cried a lot. I still do, through the pain. Nightly actually. When I've gone my whole day through pain and managed to make it to the bed without collapsing before hand...I'm proud! And every day is like that for me. Every day is a struggle still but I am living!

So, Anon, ten days is simply ridiculous. I know, however, how right now, the pain of working out is making you irritable. Without seeing benefits it is soooooo easy to say "screw this!" and just quit. But if you're reading this I implore you to keep going.

Push through the pain, the crankiness, the feeling of "what is it all for" that we all get and tough it out! (LOL. I get in trouble for telling people that all the time but here it goes again.)

If the exercise you're trying hurts too much (and it happens to me all the time), try something else to switch it up. Share the pain with other body parts so to speak. If you walk each day like I do (and for some reason lately it makes my chest muscles hurt) then walk once a week and then yoga another day or tai chi or dance or get the Carmen Electra Lap Dance video... (Yeah I've tried it! So what?!?)

Bottom line is this. There are no quick fixes for lack of energy for Fibro. There are no miracle pills that will take away all your pain. But...exercising puts you on a good path. But the road...is very long.

You may feel as if I'm pulling something out of my backside and throwing it on the screen for all to read without any validation but you're wrong.

I've been through it myself and I feel the difference. I know many other Fibro Mates who I talk to regularly that like me...struggle to exercise but in the end, feel the benefits.

If you believe you will fail....you'll fail. But I believe in you. Please, "keep moving forward".

May you find something positive that speeds you towards Fibro remission. Okay, rant off. Phew, I feel better.

All my best,
Gin

***Still to come:

-Men and Fibro (waiting on a few emails for this one)

-LDN (Low Dose Naltrexone.)

Carnival Rides And Fighting The Unknown!

2009-09-06T23:07:00.000-04:00

A few days ago I had a pretty serious flare-up. UGH!

One thing that bothers me about flare-ups is how quickly they come at you. For several days you feel great, you start to make plans and then WHAM! (not the 80s band) you get kicked down by pain and sleepiness without the sleep. (Even my hair has been freaking out! The ends looked like I stuck my finger in a live socket.)

However! During the flare-up, there were a lot of things I had to do. Labor Day weekend and my daughter's youth called to me. "Gin...you must move your posterior up from the bed and walk many miles." To which my Fibro self laughed.

We were supposed to go to the Renaissance Festival here in Michigan as well as the Peach Festival. Of course, I also heard from my literary agent who asked for more chapters on my Young Adult book...by Tuesday.

Needless to say, I was panicking about the Flare-up and allowing myself to get worked up over the "need-to-do" pile building up around my weekend.

It wasn't easy, My Friends, but pain and all I rolled myself out of bed, took a shower (much to the appreciation of the general public I'm sure), and pushed through the pain.

By the time I reached my car after the Ren Fest, I was in so much pain I couldn't sit still, and I live a good hour and a half from the Festival. When I pulled over to fill up on gas, I had to relinquish the driver's seat and just curl up in a ball.

I napped when I got home and felt better but woke up sore even this morning. Too bad I didn't have time for pain. I had a Peach Festival to attend with my daughter and my dad, half sister, "real" sister, and my dad's new wife.

My neck hurt like hell, my calves ached, but the biggest problem was when my half sister laid the guilt trip on me about not having anyone to ride rides with.

"My Fibro," I whispered to my dad. "I have no idea what it will do to me on these rides."

My dad smiled and then nodded as if he could totally understand even though I suspected he didn't. But eventually, when everyone else around me refused to go on a damned ride with her...I caved.

Of course the craziest ride at the carnival was the one she wanted and so, guilting my real sister into going with me and the step sister by admitting I was afraid I'd get sick or dizzy and pass-out... I rode a carnival ride.

By the time it was my turn to board the crazy ride, I had worked myself up so hard I felt my heart pounding in my throat, and all because I couldn't stop thinking of what *might* happen.

Before the shoulder harness locked in place I kept thinking, you don't have to go on this thing. You can get off with just a small pride smear and at least know that you'll feel fine by the end of the night. Why take the risk of feeling like crap?

But I kept thinking about all the things I've given up in the name of Fibro. All of the things I'm told I shouldn't do or might not be able to do anymore. The constant nagging fear in my head over every little trip I make.

When I go to Las Vegas and my Beau wants to take me up in the mountains, I worry about having an IBS attack that would drown me in embarrassment. When I get on a plane I worry about having a panic episode. When I want to go for a walk every day I worry that once I'm far from my house...my knee will give out or my back will cramp up or my legs will get that *damned* "lack-of-use" itch that really makes no sense considering I walk ALL THE TIME.

I thought about all of this as I stood in line for "Freak Out" the carnival ride. (Fitting name isn't it?) I always try to be as prepared as possible for all of my fears. For the mountain hikes I bring pain pills, wet t.p. wipes and a plastic bag. For the planes I bring a folding hand fan which reminds me just to feel the air and breathe, for the walks I always have a cell phone and I only go if Dan is home just in case I need him to drive around the subdivision to pick me up.

In other words, I try to plan for everything. Well not tonight! I made myself get on that stupid ride and as I sat there thinking I was about to have a panic attack...I made myself dance to the music in the background. When in doubt...wiggle your butt and pretend you're having a great time! The panic ebbed and though the ride was a bit much for me, I was so glad I rode it that I rode seven other rides. I spun, I dipped, I twirled, I scrambled and in the end I finally had to concede once I felt the nausea tap me on the shoulder but I was proud!

Such a silly accomplishment, no? And yet one so very vital to Fibro.

Planning for possible problems, like packing wet wipes and hand fans is a great idea, but we, as FibroMates have to learn that every once in a while, taking a risk on the unknown reminds us that WE ARE ALIVE and able to at least pretend to live normally.

Take small steps to feeling good about yourself again!

Coming Soon: I received a letter about men and Fibro. I also received another about future pain fears. I've done more research on LDN for those of you who have asked me why I haven't posted about it. I feel a bit more confident about posting it on the blog.

I'll try to get to these topics soon but as I stated earlier in this post, I'm a bit swamped. I'll do my best though! And hey, keep the questions coming. Even the ones you think aren't important enough to ask!

All my best, My Friends!
Here's hoping you all are working for those 98% painfree days,
Gin

Say No To New News

2009-08-16T21:21:00.000-04:00

Hi!

How long has it been? A month? Wow. I feel like such a slacker. Honestly, though, I've received nothing new in the questions department that I haven't been able to direct to an archived post and of course, I've been busy trying to build my writing career. No easy feat for us FibroMates!

I have received material from the media and medical communities about new pharms arriving on the shelves, new tests whispered in the underground etc. and I've also been asked why I haven't posted these things here when other websites and blogs have "Fibro News" everywhere, all day, every day.

I'm just going to answer simply: I'll leave the iffy news to the website and blog updaters who need daily material. I don't post daily. I post when a question arises or I have something from personal experience to share. So, for me, in regards the the latest and greatest breaking news... I like to hang back until more tests are done outside of the pharm companies OR until I try this new drug or herb or crazy rumor and then either tout it or smack it down.

With my silence on these new drugs or herbs etc, I do not intend to discredit early research. I simply need something with more than a 20-30% success rate with an error % around the same % as the success rate.

But this does NOT mean I am not hopeful in these newfangled shiny Fibro things! I am keeping my ear to the ground and will report any amazing finds I...well...find!

All my best to you my dearest friends! I apologize if you felt I abandoned you. I'm here!

Email your questions to fibrohelper@gmail.com.

Gin

Romance Writers Conference (Careers and Fibro)

2009-07-19T20:09:00.000-04:00

The Roman Writers of America held their conference in Washington D.C. this year and I had a really good time.

My Fibro held up decently well. I only had a few times where my stomach was whacked out but I managed to maintain my composure. I had a migraine but it went away after some rest which is new. I had lots of muscle pain but kept on pushing myself anyway so I could sight see, and I only felt wigged out by the crowds a couple of times.

Not bad!

All-in-all, I proved that I can juggle my writing career with my Fibro. And that is important for all of us!!

We can juggle, as long as we can dictate our career instead of have it dictated to us. Being unable to stand up and walk around or sit down to rest whenever we need to is a big factor in finding a job.

Unfortunately for us, there aren't many jobs out there that will let us pick our own hours and let us change them at the last moment when something hurts.

These factors have to be taken into consideration and as a sufferer of Fibro you have to figure out how to make your vocation bend to you, or to bend your vocation enough to be able to continue to do your chosen profession with your limitations.

We can only push ourselves so far before we do more harm than good, so if you push and you still meet with resistance with your profession and you hurt yourself in the process...it is time to reevaluate.

Starting over, or creating a new way to utilize your learned skills is daunting, but with a little bit of creativity, you may find an idea that gives you exactly what you need as a Fibro patient, and as a human being who still needs to put food on the table.

I'm extremely tired from the trip and may not be making a ton of sense so I'll leave it at this...You can do it, I believe in you.

Best,
Gin

Cracking Bones and Rash Lovin'

2009-07-10T11:33:00.000-04:00

Well, it is summertime, even though it doesn't feel all that summer-y yet this year. And typically, I'm exercising more which means more aches and pains.

I've had two appointments this week; one with a chiropractor, and another with my dermatologist.

Last month I had two emails asking about rashes and boils. Most people know I suffer from rashes of various sorts and have had to go to the derm a few times to figure out what the deal was. My Derm, a Dr. Julie Byrd, is a wizard, I'm sure of it. She's in and out and diagnoses me with barely a glance it seems.

So here is what I found out! As promised. Those little red bumps? (and sometimes little white bumps!) Possibly Keratosis Pilaris. It is a common condition where 40% of the population "suffer" from it. Okay, it isn't much of a "suffering" condition. It is ugly, it itches sometimes, but in truth it does nothing, it means nothing. Some rashes are the beginning sign of a worse condition but this is normal. It is basically, ticked-off hair follicles that react poorly to dryness. Which is why the condition is usually worse in the winter, because with summer comes humidity. Unless you live in the desert, then you're screwed year-round.

How do you tend to it?

My derm gave me a premixed bottle of lotion-type stuff to rub on my arms 2x daily. I have no idea what is in it and the bottle doesn't say. That's some trust I have isn't it? Rare for me. ::grins::

Okay, so if you can't get this mystery lotion...what can you do to minimize the appearance?

- Avoid hot water. Hot water removes natural skin oils. Cool down your showers ladies and gents and while you're at it, make them shorter! According to the AAD American Academy of Dermatology: "Prolonged showers or baths hydrate your skin, but the process of drying your skin after the shower or bath with towels or evaporation can leave your skin less hydrated than before you started. Keep showers between 5-10 minutes in length and with WARM water.

- Use mild soap. I was given a list of "mild" soaps. Quoted from Dr. Byrd's list: Dove White, Oil of Olay, Aveeno, Cetaphil, Basis, Purpose, CeraVe,Vanicream, Eucerin Calming Body Wash. (Common drying soaps include Ivory, Dial, or Irish Spring.)

- Do not rub your body dry. Pat, pat, pat, pat.

- Moisturize immediately after showering. Personally I love using a combination of Skin So Soft from Avon and Eucerin but Skin So Soft wasn't on "the list" from my Dr. Derm. "Healing and Hydrating Lotion, Aveeno, Cetaphil, Eucerin, CeraVe body lotions." (For hands Neutrogena Norwegian Formula Hand Cream was recommended to me.)

- Do your laundry differently. Also from my doctor's note: "Use fragrance-free, dye-free laundry detergents and avoid using fabric softener sheets in the dryer." (Sheesh!)

-Shave for comfort not speed. Okay Speedy Gonzales. We all have probably done it in the past. We shave with soap in the shower or using only water. Big...big no no for dry skin sufferers. Do towards the grain, not against it when shaving and use the lube ladies!! (and gents of course.) Gentle creams and gels are the best and change the blades like you would a dirty diaper! Often!

For severe dryness use non-prescription urea or lactic acid based products...and smack your parents. Apparently, this is inherited.

Boils! Boils are more often hormonal. Are you going through a life-change? Pregnancy? Started a new birth control pill? Feel them coming in around your period? There is treatment. Ziana is what my derm recommended. There's a website for saving money on the medicine. www.ZianaSavingsCard.com (I have NOT been to the webbie yet to check it out so do so at your own risk.)

Okay, now for my Chiropractic experience.

Dr. Bone Cracker is a great guy and part salesman. All Chiro's have to be since half the population feel as though they are quacks. I'm going into all of this treatment stuff with an open mind. I've seen things and disagreed with a lot of "real" doctors have said in the past so what do I have to lose?

He took X-rays and poked around on me to find the trouble areas and told me to give him a day to come up with a game-plan. The next day I watched a video (yippy!) and he took me in a room to show me just how messed up I was. He talked a lot about the way things were supposed to look and calcium deposits, etc...but the truth is, I was being logical and using my brilliant powers of deduction while looking at an Xray where my spine was so far over to the right I thought.. "that can't be good". I remember biology and the big skelly in the corner of the room and I don't remember the spine ever looking like that.

My spine is kinda...straight. It isn't the angle of the Xrays or some hokey crap he's spewing at me. It is logical. I have tons of pain in the small of my back and the more I walk the worse it gets. Pressure from a straight rod as opposed to a curved rod. Now all of this was covered in Dr. Bone Cracker's lecture but as I mentioned before, I zoned him out and used my own knowledge of physics (which granted, isn't extensive) to deduce that perhaps if I could fix my posture a little bit, I might be able to alleviate some pain that I experience as a Fibro Sufferer.

Now, according to that one study done on Fibro patients that discovered all or nearly all of Fibro patients seemed to have a lower flow of blood to the brain...perhaps fixing the spine could help with that. Then I could feel for myself whether or not that study held merit.

Okay so...bring on the Guinea Pig that is Gin. I'm actually quite terrified of getting my bones cracked. You always hear of horror stories how someone walked into the office and never walked back out because of permanant damage. I'm disabled enough, I don't need to add paralysis to the list. But I swallowed down my fear and let him crack my bones.

My hips, my back, my neck (OMG did that feel good), my feet, my wrists and he jerked my shoulder around a bit because I complained of neck pains every night when I sleep. He said I'd sleep better, and feel no pain...but I might be "sore" from the newness of the adjustment. That's the salesman in him talking.

For me, he was partially right. My neck didn't hurt me...and it hasn't hurt me for the last two days, and considering the injury is a nightly thing, I'm pretty excited. HOWEVER, that night, the foot injury I discussed a few posts ago in regard to my nightly walk, worsened. It throbbed, it ached, and I had to put a heating pad on it just to get to bed. But that was the first night. The second, I was right back to "fine".

Typically, he has suggested 36 visits. Three a week to start.. then down to two.. then one. This is normal and considering that night, after I had been popped, most of my bones popped again (probably putting themselves back where they feel they belong), I can see the need to go every few days to get the bones used to being back where they belong. And slowly wean myself away from the process.

I don't know. I'm reserving judgement on the whole thing, but I have to tell you my friends.. the fact my shoulder isn't keeping me up all night (nope, just regular Fibro and meds are doing that) I'm cautiously optimistic. If I go in being negative, I will unconsciously make sure it doesn't work. If I go in there gullible, I'll make myself believe it works. So I'm simply documented what hurts when and comparing it to my pain diary from before. I'll let the truth speak for itself.

All my best my friends!
Gin

Yeah! I know I'm Limping! So What?

2009-07-05T23:31:00.000-04:00

Speaking of working out and bettering our health with exercise, I feel it is my duty to reiterate constantly just how hard it is to do by giving an example from my own exercise world here.

I don't want anyone walking away from the keyboard rolling their eyes with the thought that I am just another health nut trying to do my part for society by claiming everything can be fixed with a little bit of exercise, grape leaves, and vitamin B Complex and that the experience is all wine and yellow roses.

Sure, I like to put a positive spin on everything and keep my blog and my advice upbeat. But I also want to be realistic.

Exercising with Fibro is really, really hard. I will say this until I am blue in the face and digging my grave. I don't like to say it because it deters people from trying but at the same time, I have to make it known so that everyone who tries to exercise and has to throw in the towel at times, knows that their response is NORMAL.

Every few months I stop exercising, and I start the decline in my health again. I have to go back and read my journals where I felt great and had 24 days 98% pain-free in a month to remind myself why-oh-why I exercised in the first place.

So why is it so hard to do something so simple as walk a half-mile a day or do 25 jumping jacks?

Because Fibromyalgia tells us it hurts. Fibro gives us more symptoms the MOMENT we try and fight it back. Our brain makes something hurt and hurt bad and our depression saps our ambition and spiritual happiness.

It is no surprise then, that less than 10% of Fibro Mates exercise daily. Why should we bring on the pain? Well, I'll tell ya.

I know I talk a lot about vitamins and exercise and eating healthy and the truth is, when I do all of those things, I feel GREAT!

The other half of that truth is...I fail a lot. I get busy with my career and eat a cheeseburger a few times a week. I wake up feeling groggy and miss a walk. My fibro fog makes me forget I was supposed to walk or maybe it fools me into forgetting for so long I think I already walked the dog. ("Didn't I just put that leash there?") And speaking of Fibro Fog... I can't tell you how many times I forget to take my vitamins. "Set an alarm," they say. Well, in theory, that works. But how about the times I hear the alarm...shut it off and then POOF...I instantly forget all about it. From one nanosecond to the other...it is gone. Nothing makes me more annoyed than when people tell me to set alarms like that is a guarantee.

"How is it possible you forget that quickly?" "Then don't shut it off until the pills are in your hand." (That would mean I would have to remember to walk over to the pill counter and put them in my hand instead of caving to instinct and shutting the alarm off first.)

My point is that none of us are perfect. With Fibromyalgia, we have to do our best and not beat ourselves up when we fail.

HOWEVER...

We have to be honest with ourselves too. Am I using Fibro Fog as an excuse to slack? Is there anything more I can do to help keep track of my activities. Remember: Whatever you implement has to be done BY YOU. Only you know what will be effective. No one else.

"Every time I exercise it ends in pain. Why would I want to do that to myself."

I received a letter a few months ago that said just that. The sentence is very telling. It has the frustration she feels in it, the excuses we all use, and fear.

Fear of the unknown.

Why exercise? Because it can make us feel better even while causing us pain. What can you expect? Only the unexpected.

Every ache and pain I get because of my daily walks/exercises...changes.

For example: From yesterday to today I've gone for four dog walks around my suburb.
Yesterday Walk #1. The top of my right foot hurt and continued to do so for hours. It pulled an encore tonight.
Yesterday Walk #2. My right calf felt like it was going to have one of those OH MY GOODNESS muscle cramps only a few houses down from mine. Last thing I wanted to do was roll around in one of my neighbors front lawns while I held my leg and moaned pitifully, but too stubborn to give in and turn around... I made it all the way.
Today Walk #1: My left hip ached midway through my walk and towards the end my right shoulder.
Today Walk #2: My right hand, where I hold the leash, throbbed so bad I couldn't type for a while and my head started to pound.

Instead of allowing those aches and pains to get to me...I truck through them. It is no easy feat considering the pain isn't just a small ping...its a massive owwie, but as a Fibro Mate.. I *have* to push through it all...or I'll never do any of it.

Expect to be hurt, expect to give up, expect to have slip-up days but always.. ALWAYS remember to get back up and start all over again. You'll feel better from exercising eventually, sure. But the best benefit is knowing that you're fighting and, My Friends, that is what being a human is all about. Fighting for ourselves!

All my best,
Gin

The Twitters!

2009-07-03T23:33:00.000-04:00

I received notification via Facebook, that a friend of mine and fellow fighter of Fibromyalgia, has been working on developing a low impact exercise regimen five minutes every day for 22 days!

Her progress is in journal form on Twitter so I have decided to try and Twitter so I can keep up with her. Anna! I'm so very happy for you and your fight for wellness.

Those of us with Fibro know just how hard it is to stick to a schedule. Everyday things take us quadruple the energy of normal folk so five minutes might sound like nothing to some people who stumble upon this page...but for Fibro Mates, we know just how hard it is to exercise at all!

That is why I always smile when someone tells me they have managed to stick with exercise longer than 10 days. By the 10 day mark, most of us are ready to stop and let our arms or legs fall off...sure that with all the pain, that is exactly what the appendages will do. LOL

So, Anna, I salute you in pushing yourself near the thirty day mark and hope you will keep going each day.

Remember, and this is not just for Anna... Do NOT push yourself harder than your body can go to try and "feel the burn". While this is great for people without Fibro.. WITH Fibro, you could feel the burn for a few weeks and destroy your pattern, which we all need to get in the habit of sticking to our exercise regimen.

For me, Fibro Fog can gum up the works, so I have to make sure I walk my dog twice a day around the same time. Luckily, because my exercise is a brisk walk through the hood with my puppy...she serves as a reminder. "Okay, Gin...time to go for that walk now!"

All right...so... recap.

Exercise is good.

Don't over exert.

Kudos to Anna for the update.

And I've made a Twitter which may not see much use. I still recommend the emails as opposed to tweets since 1) not too many people use Twitter. 2) I check my mail more often than I do Twitter.

But, it the choice is up to you, Dear Friends!

All my best hope for great days of exercise and 98% pain-free weeks.
Gin

**disclaimer on all typos that are well within my control but outside of my ambition.

Here Comes The Sun!

2009-06-24T12:06:00.000-04:00

I love that song. It has been in my head for the better part of the week.

"Here comes the sun,
here comes the sun,
and I say it's all right
Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun,
here comes the sun and I say it's all right
Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here Here comes the sun, here comes the sun and I say it's all right
Sun, Sun, Sun here it comes x5
Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it's been clear
Here comes the sun, here comes the sun, and I say it's all right
It's all right "

Sing it with me!...and George Harrison. lol

So why is this song in my head?

Well, I've found an agent for my books. It is...party time! lol I'm very excited to have gone this far with my career despite it all.

And the other reason why I'm listening to this song? I've taken to walking my dog twice a day, and because of Fibro I have a sensitivity to the sun. A Sun Allergy.

It makes me itch, it gives me rashes and I burn within five minutes if I don't have sun screen on! I'm miserable, which brings me to my mail box:

"Dear Gin,
Hope you're okay (Thanks Barb!) sense I haven't seen you around lately. I wanted to ask you about sunburns and rashes. I have a boat and can only go on it a few times a year because of my skin. I remember you talked about your rash before. Any help would be awesome, thanks. barbara"

Yeah, I've been a bit busy and I'm so sorry. I can't be outside without sunscreen and even then I still burn. I have a bottle of 50 right now and I still burned.

My sister (at least I think it was my sister...thank you fibro fog) told me recently that she heard anything over 30 block is just for show. I don't know why that is, I'll have to do some research on it but I know that I didn't burn in the Las Vegas desert when I had 80 block on. So someone better tell me scientifically why I still burned wearing 50 while walking my puppy. I've seen 100 proof make the shelves these days but I haven't tried it. I'm very...very tempted to go buy some but if I remember correctly, it was expensive.

I go to the dermatologist on the 9th of July before my trip to see about the crazy rash I get on my upper torso and biceps. I'll ask about the sunscreen and report back to you all as usual.

Again, in case I didn't make it clear, I am so sorry for the long periods of absence. I've got a lot of work to do and little time to do it. After the RWA conference in July, I should have a little more time.

All my best wishes for 98% days My Wonderful, Supportive, Friends.
Gin

I Need A Hero!

2009-06-12T10:23:00.000-04:00

I went to a gastroenterologist a few days ago, and mentioned my yeast theory, only to be treated like a simple child without a basic understanding of logic. What was my yeast theory? I had horrible IBS, or so I thought, where I couldn't eat anything without getting an upset stomach. Then I received a yeast infection and after I took the pill, the following day nothing upset my belly. According to my new Gastro doctor, this was purely a coincidence.

Really??

Boy am I annoyed.

And to make matters worse, the woman told me I have IBS (even though I feel fine for the most part) and gave me a perscription.

Okay, I thought, I'll try it. You can't get better if you don't try everything right? What's the harm and hey...maybe I can eat ice cream on these pills.

I got the perscription filled and to my horror...there was a warning in the pages that taking this medication is not advised for those who have had bad reactions to anti-depressants.

Horrified that, despite mentioning all of my bad reactions and the near suicide attempt I made on them years ago, I was still perscribed an anti-depressant...I began questioning the validity of the medical profession.

What I need...is a hero. A doctor who listens and tries different things. A doctor who believes me when I say "I can't take that."

This doctor told me only that systemic candidas is only suffered by organ transplant patients, blood transfusion patients and those with AIDS.

My question is, with as little as we know about Fibromyalgia, isn't it possible that systemic candidas can be brought on by it? No? Why not? Those are the answers I want.

Who thought it was possible to suffer pain without any physical evidence of existance 20 years ago? Barely anyone. Fibro is still considered to be a myth in most of the world, and the medical community is still greatly confused by the syndrome.

It is moments like these where I feel so jaded. I just have to take a deep breath and continue the doctor hero search.

All my best to you, My Friends. I hope you far better than I on the doctor front.

98% days to you all,
Gin

Prescription Tidbit

2009-06-03T22:51:00.000-04:00

One of my many doctors said something interesting to me today that I thought I would share with all of you. I'll leave it to your discretion to think of it what you will.

LOL. With a lead-up like that, I can hear about half of you groaning. "Great, what did some quack say this time?"

I was at the Allergist, for once, not for me but for my daughter and when we were discussing medication, she held up her hand and said "Don't ask me about XXXXX" I've X'd out the name to keep the lawyers at bay.

When I assured her that it hadn't been on my list of questions (Yes, I have to make a list or I forget the things I want to talk to the doctor about.) I asked her why she had such animosity towards the drug.

Her answer was this: "As an allergy medication which the pharm companies tout in the commercial that it can be, it does nothing because it is an asthma medication. It's not even a good asthma medication either and it isn't worth the paper to prescribe it on."

So what is with all of the commercials? You'd think with all the advertising for this drug, it would work well. She smiled (You know the kind of smile...like she wanted to pat me on the head for being cute.) and said "Medications that do what they are supposed to and are the best in their field, don't need to waste the advertising dollars...doctors prescribe drugs that work. Now if their are two that are similar and are put out by opposite companies, you might see them battle it out on television."

Huh. Now she had my attention. I felt a little foolish for thinking that pharm commercials = good medication. From my stand point I thought the most advertised medications meant they were worth the money it would take to make a commercial. No wonder I'm not in business!

She's an allergy doctor, not a fibro specialist, but I heard myself asking anyway. "I hear a lot about XXXX helping with Fibromyalgia but when I tried it, it did nothing for me yet it is all over the television. Still, a lot of doctor's seem to prescribe it."

Her answer?

"When Doctors don't know how to treat or cure something, they go with what is available and hope for the best."

I thanked her for her time, but the thought stuck with me for a while. Normally, I would take what she said and store away what made sense and think on the rest. However, I remembered my R.A. saying something that gave me just as much food for thought a long time ago. She wanted to prescribe me anti-depressant meds and I informed her that I have a horrible reaction to them. Had even had thoughts of suicide while on them.

I said, "I can't trust them not to mess with my head. If you tell me it will work for sure, I'll give them a shot."

Her answer: "These medicines make Fibro patients feel better by tweaking their brain communicators. Are they in less pain? Some, or maybe they just don't think the same way they used to."

I know she didn't mean to make it sound like that but I pretty much got out of that pep-talk as... Anti-depressants can make people think they feel better.

Many people swear by their anti-depressants and I'm all for whatever feels good, whether it is feeling good in truth or in our heads. Who cares as long as it works.

Still...thinking about what I've been told, I'm even more reluctant to try new drugs, especially ones I see on TV!

Yikes!

LOL
Tell me what you think, My Friends
All my best wishes for 98% days!
Gin

Dementia

2009-05-28T15:44:00.000-04:00

"Dear Gin,

Can you tell me what you know about demnta and altsheimers linked with fibro?

God Bless

Jackie"

Hiya Jackie! This is a common worry because of Fibro Fog. To ease your mind a little bit, I'd like to tell you that there are no studies that show Fibromyalgia leads to dementia or Alzheimer's disease. However, if you're worried about suffering from either, I have this vitamin advice to give.

Take vitamin D. I put your letter up today because I received the link below. In it, it states that there is enough evidence to show the lack of vitamin D can be detrimental to both conditions but no conclusive studies have been done.

As I've mentioned a ton of times before...it takes money to do studies and if it isn't marketable (too common of a cure/treatment to patent like bee pollen---thank you David V. for that information) no one will bother with the study..because there is not money in it. Scientists don't have the kind of money they can just throw around for studies. They need grants and backers. We all know the pharm companies aren't going to spend money on a study that says something common like...vitamin D will help negate the need for their expensive prescription drug.

LOL.. okay...no more conspiracy theories from me today. The link is below.

http://www.elements4health.com/possible-link-between-vitamin-d-deficiency-and-alzheimers.html

2009-05-26T11:26:00.000-04:00

Hi all!

I hope everyone had a great long weekend! I had a mild headache and was very happy about that. LOL Odd isn't it? But usually I have horrible migraines around my menses, so the fact I had a little one was awesome!

I have received a few emails about conditions that are related lately, to the point I decided to answer them on my blog than by individual mails.

A facebook correspondent recently asking me via private message: "Have you heard of anyone with fibro also having spondylosis - a form of spinal arthritis?"

I've also been asked about costochondritis (of which I suffer), and R.A, and back pain, and mysofascial pain syndrome. All recently.

The questions vary from the one above that came from a great lady concerned about her daughter's unfortunate condition, to other questions asking me whether or not these are symptoms of Fibro.

Like fingerprints, everyone's fibro is different...and no one knows what brings on Fibro.

For my Facebook friend B.T. the answer is that spondylosis is a separate condition, not related to Fibro. However...Fibro could have helped point out this existing condition or could be the direct cause of having Fibro.

What do I mean? I can almost hear some of you giving me a mental smack down to clarify. LOL

Fibro has no determined origin. Only theories on how and why and when people get fibro. With the Nov. 2008 study of blood flow to the brain, there is a theory floating around that lack of flowing blood to the brain is the reason why no one can find a pattern to the development of Fibro. Everyone has experienced the lack different ways for different reason.

Some of us maybe received it at birth...maybe our poor posture is cutting off blood flow...or our arthritis or bone issues are bringing it about. Accident victims might have compressed the flow or...well you get the point.

Blood flow makes sense and I'm leaning towards that but keeping my options open. A few years ago they thought chicken caused cancer...::shrugs:: so things can always change, new discoveries can be made.

In short...what comes first? Fibro or the other conditions? It is anyone's guess but for me it seems like Fibro reacts to stress in our bodies, whether it is blood flow or not. That is why we have flare-ups. It seems to reason that if Fibro reacts to stress so badly...perhaps that stress is what caused the Fibro in the first place. Emotional...physical...no one can say.

To B.T. and her daughter...all of my best wishes for treatment and pain-free days. Here are a few spondylosis links that may be helpful...

http://www.spineuniverse.com/displayarticle.php/article3097.html For treatment options.
http://www.mayoclinic.com/health/cervical-spondylosis/DS00697 Definition of the condition.
And I really like the visual aid with this page http://www.spineuniverse.com/displayarticle.php/article1440.html

...and to the rest of you, My Friends...Be well, and as always, let me know if you find information that contradicts what I've said here.
We're all learning our condition, and though I've done a ton of research, there is always new stuff that slips through. And I do a lot of reading to keep up on the latest. Your help can make my advice stronger!

Love you all!
My best,
Gin

Whew!

2009-05-21T12:13:00.001-04:00

What a busy week that was!

With the book release and the house party, my daughter's birthday and Dan graduating...the fun never stopped and neither did I. Now I have a new puppy in my house and my sleep schedule is suffering for it.

Sleep is so important to Fibromates, that if anything disrupts the pattern we manage to get ourselves into (which is hard enough) we get symptoms. Yippy.

I've had a few brain twinges the last few days. I hate those. I'm assuming they are related to allergies because I have noticed that they occur most often when I'm having a bad allergy day. Of course, I also notice it when I got too many days on the Alavert allergy meds. If I take anything stronger than Alavert the brain twinges are even worse. Not fun.

Then to add to my issues this week, I've notice those little circles of dead skin coming back with a vengeance. They're small, various sizes of small, and they are red with yellow tinted centers once the dried skin flakes off.

I have a dermatologist appointment in June. Boy is that helpful. What am I to do until then? Look like I have lesions I guess. If anyone has experience with this type of rash, let me know. Or if you have noticed it like I have, I'll let YOU know what I find out next month.

Supposedly, I'm allergic to the sun and I *was* out cleaning up my yard for a few days. Maybe thats it.

Yikes.

Otherwise, I'm feeling great. I'm keeping active. I'm going for daily walks and my energy is back to what it should be after the yeast pills. I think I still have a bit of yeast in my blood but I'm still feeling better than I was. Even though the pills made me sick to my stomach, it was worth it to feel how I do right now. I'd go through it once a month if I had to. I think I'm going to try a cleanse this coming up week. One of those natural candida cleanses and see if I feel even better.

The things we do to ourselves! lol

All my best, My Friends.

I'll get to the letters soon, I've just been swamped and you have my most humble apologies.
Gin

Yay! Book Release Day!

2009-05-15T10:58:00.000-04:00

Today, my ebook released!

I am very excited about it and happy to see my pen name scrawled across a beautiful cover. (A little on the naughty side because it is erotic.)

But today's post isn't about self promoting. Not in the "selling my book to my fibro friends" way.

Nope! Today is about overcoming our aches and pains to see our goals realized.

I know so many who have sent me their updates on what is going on in their lives now for the positive and I can't help but feel overwhelmed with pride.

Not because I have had anything to do with it personally, but just by knowing them. It takes super human strength to fight the pain, fatigue, and myriad other complaints to just...live in the "outside" world.

Some of us...don't make it. Some of our Fibromates simply...can't fight their way out of the pain and that breaks my heart. It won't stop me from encouraging them, though. I don't give up on people.

However, there are others who push, push, push (mostly out of frustration) and find themselves in a better place and happy about life again.

These Fibromates (and you know who you are) are inspirational to me. I think of them when I have a bad day or a flare-up and I hope they can think of me too.

Draw strength by the inspiration of others and realize that life might be harder for us, it may take us 100 times as long to climb our dream mountain as it would the average person but we'll get there if it kills us!

Thank you for all the support these last few months!

Upcoming the week, I'll discuss my yeast battle and where I'm at with it.

As always, My Friends, have a great, 98% pain-free, day!
Gin

Fibromyalgia Awareness Day

2009-05-12T09:32:00.000-04:00

I have an awareness tea scheduled for today, in honor of Fibromyalgia Awareness Day. Today!

The plan is to talk about who it effects, how it effects them, and the best way to treat someone with Fibromyalgia, be it spouse, friend, or family member.

Because Fibro Awareness is not about telling a Fibromate all about treatment options and how they can help themselves.

No, that is every other day! lol. Awareness day is about making those who don't suffer understand those who do. It is about shrugging off the vicious lies and stigma attached to Fibromyalgia with a healthy dose of truth and statistics.

Today, at my tea event, I'm going to talk, too, about the myth: "All Fibromyalgia patients are fat, white, American suburban housewives looking for attention." Though I have a big speech prepared, I'm going to summarize it for you, My Friends, to spare you. ::winks::

Science is made up of theories. You get one in your head that seems logical and then you experiment and test until you prove or disprove it.

I'm going to throw out my theories and you can agree or disagree with them.

Let's look at the phrase "All Fibro patients are fat, white, American suburban housewives looking for attention."

I can see where this has become a popular myth because it is based on truth.

Let's look at the racial aspect. More white women suffer from Fibro than black, Latino, Arabic...etc. There could be many reasons for this. Not the least of which could be history. How much in the past did white folk sit back and relax while others did the work for them? If Fibro is hereditary, could the lack of exercise in our ancestors be the reason so many white women suffer today? I would say it is unlikely...but it isn't impossible. But we see cultural susceptibility all the time. It could be from diet, climate, heritage.

For example: According to diabetes.co.uk "African Americans tend to have lower average cholesterol levels than the general population. As nearly 40% of all African Americans struggle with hypertension, black patients and their doctors often focus on controlling blood pressure not diabetes. "

Now how about countries where women are barely recognized as animals? How extensive is the testing for Fibromyalgia going to be there? So Arabic or middle-eastern women who suffer might not ever be diagnosed. I won't go off on a rant here, but I don't live there, so I cannot speak on the subject with fact, only speculation.

The point is that all bodies are different. Just because one group tends to suffer more than others with a certain affliction, does not and should not detract from its credibility.

Okay...

"American suburban housewives..."

It is believed by some countries that American housewives made up the disease and the Pharmaceutical companies are making money pandering to them.

The United States is not the only country that has recognized Fibromyalgia, but we're the most well known. America can't sneeze without someone pointing a finger and mumbling "those damned Americans".

Some of us, as American sufferers, just have to do the same thing we did back in kindergarten. Ignore the idiots. In truth, there are some interesting treatments in other countries for Fibro, but you don't hear about them much because they're not "damned Americans".

And...fat, housewives. It does seem that way sometimes doesn't it? I look down and I see a woman who isn't super model skinny. I'm not out jogging my complex (I walk it. lol)and I'm a housewife. ::Gasp:: Oh my god! That must mean I'm making it up.

Or it could mean that those unable to exercise get Fibromyalgia! You often here people talk about how much pain they are in, and it keeps them from exercising, thus creating what I believe to be the vicious circle.

We experience a bunch of pain and therefore can't exercise which brings about more pain.

That isn't to say that exercise is the answer to everything. I am not one of those who believe in that. But I will say that being more active does make me feel better and it keeps the painful flare-ups at bay. (I still get the migraines and allergies and occasionally the costochondritis. Then there's this yeast bit...ugh. Maybe after I increase my exercise patterns? eh..who knows.)However, all it takes is one doozy of a headache to keep me down for days to start the pain cycle all over again.

Once we stop exercising, we start gaining weight. The medication prescribed to keep us from being in pain...makes us gain weight. Fat? Well not all of us but okay, the statistics do point to it. The real question is...if we were skinny, would we still suffer? Even though exercising and losing weight does make us all feel better, it doesn't take the fibro away. I am currently in the "healthy" range of my weight to height ratio. And I am capable of experiencing the same pain as last months flare-up when I weighed my lowest proves.

This isn't a life we chose, this is a constant battle and all battles have their ups and downs. If someone wants to be mean and call us fat, so be it. Karma takes care of those who judge.

Gin Note: With all the medications I've been on I've lost and gained 20 pounds back and forth the last few years. When I ceased chemical treatment, the fluctuation stopped a bit to be within 10 pounds of yo-yo. So it is my hope that the chemical treatments of the future stop making pudge pies out of us! It's ridiculous.

Lastly...

"...looking for attention."

Yeah. We talk. We try to find someone who can relate to all the pain we feel. We cry, we lament and you know what? So would non-sufferers if they had a moment of pain! We just do it more often because our life...is painted with pain.

The more we talk about what ails us, the more we get labeled as whiners, so I often tell people to shave down how much they talk about their daily aches and pains. It gives the wrong impression. Non-sufferers just won't get it. Tell them how you feel, be honest, but be understanding too. Expect understanding from them but concede a little bit too.

Sometimes we are so wrapped up in our pain that we don't think about the emotional ramifications of our constant tirade. I'm hugely guilty of this, so I am not standing on a high horse here, My Friends.

I have to keep myself from babbling on about Fibro and how it makes me feel all the time. LOL I save it for when I talk to you fine people.

HOWEVER, I'm not ashamed to say I'm in pain...or that I have fibro fog and can't mull through a topic of conversation. I mention it openly. I have Fibro and I'm not going to shy away and hide it as though it is something to be ashamed of.

I'm going to make everyone aware of it!

And try to keep down my complaints.

It is not an easy thing to do. Haha.

So that is some of what I am covering today. Bet ya all are glad you're going to miss the full speech.

::Grins::
All my best and hopes for world wide Fibro Awareness,
Gin

Happy Mother's Day!

2009-05-10T10:49:00.000-04:00

Happy Mother's Day to all the mothers and future mothers out there! I hope everyone has a glorious day filled with fun and without pain.

Always in my heart, My Friends.

Best wishes from me to you,
Gin

Aren't You Embarrassed?

2009-05-09T12:00:00.000-04:00

I received one of the funniest letters ever and I'm going to share it.

"I dont know how you go on about your health stuff in the public. I expect it from my gran but your young and talk about guys still. Aren't you embarassed they'll see you talking about bowls & rashes & yeast infections?"

It came anon of course, and it isn't an email address I recognize, but I know you're out there! ::Laughs::

I wrote a post not too long ago about vanity. How looking good is okay, and trying to look better isn't something to be ashamed of.

But just because I joked around about my vanity doesn't mean I'm not a realist.

I have fibromyalgia. Any given day it will upset my stomach, make my head pound, over-produce yeast, and make my skin itch or hurt or both. Oh and don't forget the random spikes of pain in various places.

Those are simple facts.

The truth is, I care about one thing. Feeling good! And I do my best to find that end anyway I can. And I feel better talking with others about it, helping others with their own treatments, and fighting fibro in a positive way that I hope brings a few other Fibromates out of the dark depression and into the light of success.

Those are my goals.

True, there probably aren't many men out there that would read my blog and think "I wanna date her." But luckily, I'm not trying to pick anyone up. LOL

Besides, any man wanting to be with me has to be strong enough to be the rock I need to help me cope with living through the rest of my days with "surprise" pain, "peek-a-boo" IBS symptoms, and days of that "not so fresh feeling" we all know and love.

Healthy living is what is important, and I want a man who helps me on my journey by taking it with me. Not a squeamish pansy who is going to flinch if I use the word "bowls". (lol..and it is bowels my dear.)

Perfection does not exist. I'm a good woman. I push myself to the limits of pain to live normally. I try EVERYTHING in hopes of reaching 100% days but I feel good settling for 98%. I am confident. I am comfortable. I am in charge of my life to the best of my ability.

I don't worry about what people think, and neither should you.

I really hope you didn't send me this letter because you have allowed someone in your life to make you feel ashamed of the pain or discomfort your body feels. Ashamed of what you are afflicted with.

If you have a boyfriend, a husband, a family member, or friend who turns to you and says TMI!!! when you talk to them about your health...it is time to reevaluate your relationship.

Never be embarrassed over what you cannot control. Learn to live with it, make it a part of your new life and be open about it.

Wishing you all the best on Mother's Weekend (::grins:: we all deserve a full weekend, not just a day!)

Be well, My Friends. Reach for those 98% days.
Gin

The Yeast Of Our Problems

2009-05-08T15:41:00.000-04:00

Yup! I've heard horror stories about trying to get rid of yeast. Some diets and the like to go on to "starve" the yeast out etc.

I can't really say I'm looking forward to going that far with this treatment to see if it helps my belly. But if I do...go that far...I'll let you all know how it goes.

Right now, I've only got a few more days of the chemical treatment and despite the last five days of feeling like crap, I'm doing a little better today. Is it a temporary rebound? I really hope not. LOL

Thanks, Shannon for your letter.

"Dear Gin,

I have a lot of yeast too and I tried a clenase the worked. Now I want to maintain and heard there are foods to avoid. Know of any?

Thanks,
Shannon"

I've heard a lot of different do's and don't's for food for a yeast sensitive person. I haven't tried any of them yet as this is my beginning week of yeast treatment.

I found this link helpful: http://www.formerfatguy.com/articles/candida-albicans.asp

In it, he breaks down food and what has yeast, then gives you some suggestions towards the bottom. Reading this list I shook my head. Everything I eat is on it. I eat so much of it that yeast should be growing out of my ears by now.

I think it is unreasonable to expect to go on the diet and not eat any yeast containing foods ever again. Instead, ween yourself off the foods with the highest yeast content. Or pick a few yeast eating habits to give up. By starving yourself of all carb foods, you will only put your body under great stress and more than likely end up with your face in a trough of batter, sucking down as much yeast as you can.

Make small changes until you can make big ones, and as always my friends, my greatest hopes are for you all to be 98% pain free, (but not by starving yourselves!)

Gin

The Yeast Within...

2009-05-07T10:39:00.000-04:00

I'm going to be putting up a poll soon.

It's going to be all about yeast. Yippy.

Candida Alibicans are directly linked to many of the conditions Fibromyalgia Sufferers have. In fact, if you look at the monster list of Fibro symptoms and compare it to a monster list of Candida Albican symptoms, you'll notice very few differences.

So how do we know if we have a really nasty yeast infection or Fibro? Do we have both?

The beauty of it all (yup, that's sarcasm right there) is that Candida Albican disease has even fewer tests than Fibromyalgia, though they can test your blood and get your yeast count as well as take a stool sample.

Once it is determined whether or not you have an over abundance of yeast (I do, btw) your doctor is likely to tell you the same that mine did. Yes, you have yeast, but there's no study out there to support whether or not killing it is going to do anything for you.

Yet another disorder where it is hard to prove it is detrimental to my health? Nothing concrete?! Someone can still say "It is all in your head, Gin?"

GRRRRRRRRRRRRRRRRRRRRrrrrrrrrrrrrrrrrr!!!

Okay, I'm frustrated, obviously. But it isn't my doctor's fault. She isn't telling me there is nothing she can do for me, only that treatment is unproven. She's willing to give it a shot, though and she told me to call her if I decided to risk upsetting my stomach again, by taking a seven day course of Diflucan. (I think I spelled that correctly.)

The mention of stomach problems again, freaked me out. But then I remembered that I had IBS a few months ago, but when I took a yeast infection pill...I was cured.

Yeast infection pill got rid of my IBS. Huh. Maybe it could get rid of all the vaginal illnesses. The constant yeast infections I kept thinking I was getting, only to be told not enough yeast was showing up to treat it. So it was all in my head?

Nope...probably all in my blood. According to my research (Still in the baby stages, granted), yeast grows into fungus (ewwwww) and that fungi takes over the bowels and makes life hell. Okay I'm paraphrasing.

Still, despite the lack of evidence, the lack of research, and the general lack of faith in a Candida Albican disease (is that even what it is called? sheesh), I'm going to try to treat it. I'm going to try to get back the days where I'm not terrified to eat a piece of bread. I'm on day four of my seven day treatment and the pain in my lower pelvic area has dissipated but I still don't feel up to snuff.

I'll let you know after the "chemical" treatment whether or not it works. I'm also checking out a few natural cleanses and pills if this doesn't do it.

I'll let you all know.

Feel free to send emails about your experience with yeast, I'd love to hear it.

All my best, My Friends,
Gin

The Rash Bash

2009-05-04T10:49:00.000-04:00

"Hey Gin,

I was wondering if you have any advice on rashes. I get them alot but they aren't always there.

Thanks,
Tina"

Gahhhh. Rashes.

I chose this question today because last week my daughter had a rash. And I mean... a HUGE rash. From the soles of her feet to the top of her head, covered in blotches of all shapes and sizes. She received no less than three diagnosis by three different doctors and what I believe she really had, was a severe allergic reaction to her antibiotic.

When I asked the doctor why no one could give me a straight answer, he said "Rashes are hard".

That still makes me giggle, but it is true none-the-less. When my daughter broke out in her hives, I went online to look at pictures so I could try to tell myself whether it was chicken pox, fifth disease, or hives. Almost all the pictures looked the same, and the variations of each condition made it hard to pin point.

Fibro works the same way. Each one of us has different symptoms and intensities. So guess what that means for our rashes too.

I wish I could say: "Oh, rashes with small red bumps could be 'such and such' and you treat it by and oatmeal bath."

What I can do is give you ideas and hints that I have employed or heard about.

Seborrheic Dermatitis. If your skin is flaky and red, (face, ears, nose, scalp) area, you might have this condition. You can get a cream from a dermatologist and it clears it right up. There's even a shampoo called loprox (I could be totally screwing up that spelling but you get the point.) and it really does help. It isn't something you get rid of, it is something you keep at bay.

The itchy bumps! Sometimes they are red, sometimes they are white...for me they plague my biceps and I scratch like mad. Also my chest is itchy as well.

I should go to a dermatologist but it comes and goes and lately I have been unfortunate in the timing. It's like my rash knows I'm trying to get rid of it and it vanishes on Dr. Day.

I soothe the itch by either oatmeal baths or oatmeal paste (equal parts of pulverized oatmeal or powdered oatmeal and water). I also keep a bottle of Dermarest Eczema medicated lotion about and it helps really well.

I have little red circles around tiny patches of dried skin that pop up too in random places and nothing I have tried helps them much. Sometimes neosporin.

What causes the rashes? Stress. Pain. Medications. Allergies. You name it! Your best bet is to try to keep track of the medications you take and the days your allergies flare up and see if there is a correlation. As far as stress and pain...well we have Fibro so that is a little harder to track. LOL

The best thing really is to go to a dermatologist instead of a general practitioner. They are the people who know the most about the skin and the funky things that can happen to us. Of course, like treating Fibro, it is most often a "try this" "okay now try this" hit-or-miss diagnosis but it's all we got.

I wish I could be more helpful on this subject but all I can say is "Rashes are hard".
All my wishes for 98% (itch-free) days,
Gin

Meet Fibro Helper Gin.

2009-05-01T10:40:00.001-04:00

Hi, My Friends.

Throughout the course of my blogging experience, letter answering, website critiquing, and Fibro Patient interviews, I have managed to simply allude to the inner workings of who I am without actually exposing too much of what is inside.

I almost feel the need to apologize for that. I have interviewed others (obviously I've not managed to get them together and post them all yet) and they have bared their hearts to me. I should be willing to bite the bullet and do the same.

I'll blame my paranoia. "What if I say something that I can't take back?" The object of this post isn't to hurt anyone in my life who might read this, but I have to be as honest as I can about as much as I dare in order to feel "right" about publicizing others' thoughts and feelings.

How has Fibro changed my life?

The disorder is a negative, but the diagnosis was a positive for me. Why? Well, let's start at the beginning.

I was born into a strict, religious family with feelings that I didn't quite fit in. Growing up I felt this constant nagging, a strong emotion that told me I didn't belong to "this" family. It was very confusing being young and unable to logically deduce why I felt the way I did. I remember climbing out of the bathtub, around the age of seven, feeling...displaced. It is that point that I believe I had the first anxiety attack, the first "mental illness" indication that maybe my brain might not be 100%.

A few years later, my parents began to fight a lot. My father had a drinking problem and my mother is not an easy woman to argue with. The sparks flew as well as the slaps and pushings. The constant fighting, arguing, and physical abuse led to a divorce and the subsequent BS that followed, I'll spare you. Suffice it to say, my father stopped talking to my sister and I for years which he still blames on my mother to this day.

I had my first migraine before my parents were divorced and had a few here and there throughout my teens. My biggest problem through school, though, was IBS. It plagued me until 11th grade when finally it just...stopped.

I was really skinny back then, with a height of 5'8 and a weight of 105, so it was quite easy for my ex boyfriend to throw me around a bit when I was eighteen. He was two years younger than me and I loved him so much, I took on the responsibility for him. Still in high school, I talked my mom into letting him live with us and go to school in our neck of the woods. It sounded great to both of us at first but in the end, the life changes had an adverse effect on him, and he began to get physical.

Worse, I became pregnant after one of our bad break-up/make-up sessions. I was young, I knew, but I really wanted to have it. Unfortunately, I was the only one. My boyfriend told me he wanted to go back to high school (he had quit a few months earlier) and get into football again and a child wouldn't allow him to do that. My mother's reaction was slightly less calm.

I waited a long time before making my decision, and because of that, it was made for me one night when my boyfriend decided to body slam me on the hard concrete floor of my basement and kick me in my swollen stomach. My next doctors visit it came to light that the child I carried had "something" wrong.

It was a year after that, when the boyfriend still did nothing with his life and the abuse began to escalate into attempted murder, that I finally took the plunge and threw him out of my life.

Depression set in. And despite my positive and outgoing attitude, it didn't go away. I started smoking a huge amount of pot (more than I had with the boyfriend). It was a daily habit. 1-3 Mari-cigs a day. The men I dated where nothing special to me and when it was over I usually cried because I lowered myself just to feel a moments pleasure, not because I felt anything for them.

I met my husband online around this time and fell head-over-heels. Of course, he was too logical to let himself fall in love over the internet, or even pay much attention to someone he met there. It took a lot of manipulation and cajoling, a lot of fast talking and seduction, but eventually he came out to meet me and the rest, I would like to say, is a happily ever after.

Unfortunately, this isn't one of my romance novels. We were best friends, and I knew the moment I met him he was the one person who would always understand me and stay by my side. He was comfortable and perfect...a little pretentious but no one was perfect! He was just perfect for me.

He dragged me out of my depression and for the first time in ...well ever!, I felt loved. I moved to be with him.

That is when the panic attacks started.

Away from my family and all I knew, I had a melt down. My body gave out and I had the sensation of floating above my body looking down at the top of my head. I laid on the floor of the bathroom and my poor hubby (boyfriend at the time) was helpless to do anything but watch me as I lay there. It was a weird sort of paralysis and I'll never forget the experience. (The stuff our brains can do to our reality is just CRAZY)

I became a hermit. Afraid to go anywhere or do anything. I quit partying, assuming at the time that I was just having a bad reaction to a bit of the Mari-cigs.

Nothing helped. I thought it was just because I wasn't settled. "I could die any day and not have anything, no family here...nothing." I even told my boyfriend: "You could leave me tomorrow and walk away and I would have lost everything. We should get married or I should move back to my home."

A few months later, my boyfriend asked me to be his wife. I agreed, and then pushed to get a nice house instead of our ratty apartment. We bought a house, got married, and moved in all within six months.

I still had panic attacks and then a few migraines. Doctors prescribed me just about every anti-depressant in the world. Nothing worked. Everything made me feel more depressed, more despondent.

Then, one of the worst things happened. My grandfather died. (My entire childhood and early adulthood was surrounded by death. My grandmother Shirley died, then my uncle, then a few honorary uncles, then when I was 21, my grandmother Lillian died. She was a second mother to me living in the same house. Then my grandfather's third wife died, a few of my friends throughout the years...you get the picture. Death and I are well acquainted)

Other than when my grandmother Lillian died, my grandfather was the most devastating blow to me. My father, as was discussed earlier, was not around much so my grandpa (who lived a few houses down from me as a kid) carried the mantle as best he could. He was the patriarch of the family. He owned a collision shop and always took care of any needs of mine that he could. He wasn't Superman...he was THE Super Man. And then he was gone, and I missed his passing by hours.

My husband and I were already having problems at this point. The toll of everything, all my panic attacks etc, hitting us hard. We separated but decided to give things another try. I was at home with my husband, in a different state, picking him up to go back home to be with my ailing grandfather...when he died.

That's when I decided I wanted to have a baby. And I told my husband it was now or never. I quit smoking and a few months later...I was pregnant. I gained over 40 pounds and though I had bled almost the whole pregnancy and I had gestational diabetes, the baby girl was born and healthy.

Cue the migraines!

After the baby, all the symptoms throughout my life came at once. The migraines, the depression, the anxiety and panic, the belly pains...even female issues. For the next few years I was diagnosed with just about everything...and again...the flow of drugs came at me like waves. Nothing worked, and those that did work gave me horrible side effects.

I was on Topamax and lost a bunch of weight...and nearly my life. I had to call my husband and say "I know where your gun is, and I want to use it. You need to come home."

It was a very scary feeling, being out of control like that. I'm ashamed to say I used to think people who committed suicide were weak. But they are not. What if all of them felt the same impulse I did that day? It was as if I were being puppetted by an unseen force, made to try to take my own life. I'll never judge another victim again, nor will I stand by and let someone else be as stupid as I was with my assumptions. It didn't matter that I had a baby that depended on me. It didn't matter that I wanted to live!! My brain was telling me to take my own life and if I hadn't clung onto the rail of my bed, telling myself I was cuffed to it (can't remember if I actually did use the handcuffs or not)...I would not be here, My Friends.

Eventually, I was able to manage my panic attacks and anxiety...all on my own, but it took me years and there were a lot of sleepless nights. There still are some now, when I'm feeling down, but back then, every night I needed to be coddled.

My husband had a very horrible job description. ( ::smiles:: ) I don't know if I would have been able to be as strong as he. But as the time went on, and my migraines became worse, I did nothing. My house was always a mess...I took care of my daughter with inventive ways that made moving minimum. (I would make instant ravioli daily for my daughter and feed her lots of precut fruit and veggies...anything I could buy that I didn't have to spend more than 2 minutes making I did it.) I made her a huge playpin and lined it with padding and put a ton of toys inside of it so I could lay down and watch her play without having to actively participate.

Things were bad. I had no energy, no passion for life, and no idea why. The only joy I found was in playing World of Warcraft, where I had a life that didn't need me to be energetic.

In that world I met friends, had fun, had the only interaction with others outside of my husband and a few out-of-state calls from my mother and sister. I lived in the mountains of New Hampshire still, with my daughter and my husband (who worked far from home and didn't have a lot of time off). I was lonely and bored and My hubby was starting to get...angry with me.

He treated me differently. If I had a headache he would support me to our family and say I couldn't help it, but when I heard him complaining to his friends, I was sorely hurt. Just as he was hurt long ago when we had our first bad fight and he spied on my computer conversation with a friend and read where I wrote "I'm so sick of seeing his face!". (It was a mean thing to say...and I will forever regret it. I have a bad temper and an even worse way in handling it. He deserved better than for me to say that.)

This general disrespect he had for me, grew to epic proportions. I wanted to have another baby and he didn't. Eventually, he told me we could try, while secretly he was making sure that we couldn't. When I figured out what he was doing, I felt betrayed. Someone I trusted went behind my back to make sure we couldn't have another child while telling me to my face that he was ready to have one.

That was one of the reasons we separated. There are a few more, but in all honesty, My Friends, I can't share more than that with you. My husband is a decent man who made some bad mistakes as have we all, myself included. I'm sure the frustration of having a wife plagued with maladies that seemingly are all in her head had an affect on his actions.

As I was saying, we separated. And I found comfort in a friend of mine I knew through the game I played, World of Warcraft. Over time, when things were rough and I was unwilling to forgive my husband, I began to date my friend. I was very scared. I knew I was still suffering from migraines and aches and pains in various spots but my anger carried me through it. Of course, I was in physical therapy too and that really helped me.

I had a new lease on life. Why? I was dating a guy MUCH younger than me, and he wanted to do things...go places...be a part of my life. He encouraged me to keep living mine and I did! I started writing again, this time with a purpose. I WOULD get published. I would become an author.

It felt so good to have purpose! But after one of my trips to Vegas to see my boyfriend, I started to get severe pain. My arm was going to fall off!! (See delayed pain post) Then it was...womanly problems. Pelvic pain, cysts, yeast infections...gahhh! Hard to feel sexy and loving life when you're being kept down by illnesses. I went to the doctors and had every test run possible.. nothing. I went to the foot doctor because of a wart on my toe and I mentioned the arch of my foot was bad.

He noticed a rash on my face and asked me if I'd been tested for Lupus.

I went right home and went to my computer, bawling my eyes out as I noticed all the similarities between Lupus and my symptoms. I tried to break up with my younger boyfriend, not wanting him to be weighed down by a woman with so many health issues.

He pretty much told me I was being a fool for jumping the gun, so to speak.

Luckily the test came back negative, but that brought another question. Fibromyalgia? I was sent to an RA who confirmed the diagnosis. I told her my bad reaction to pills but she gave me some anyway. I had more bad reactions and haven't gone back to that RA yet.

Once I found out I had Fibro, I was happy. I wasn't insane...I wasn't incredibly lazy!

....But I was sick. And I wasn't going to be able to do the things I wanted to do WHEN I wanted to do them. Again, I tried to break up with my boyfriend...who once again put my in my place.

He wasn't giving up on me. But what was I going to do?

My husband, around this time, was dating another woman and spending time away from home, which was good for him. I wouldn't dare begrudge him that when I was dating too. However, I found out he had been lying to me about who he was going out with some nights when he left, and for me that just sealed the deal for us. No one likes a liar. And for me, it is a pet peeve especially since I told him all about my boyfriend and where he and I stood. Always, I made sure to be honest and as a direct result of being truthful, I was painted as "the bad guy", the one who had given up.

I was so mad! Everyone looked down on me and felt sorry for him because I had started dating someone in search of that elusive happiness. And here he was, secretly dating. That was a big fight between us that led to the ultimate horror for me. He told me he hadn't respected me for a long time and never would.

It was devastating to hear, even though I was with someone else. My husband had been...everything to me. I always felt as though I wasn't worthy, as if he felt I wasn't worthy! Now I was to learn he really felt that way? I had his child! I pushed through suicidal tendencies...I fought every damned day just to get out of bed and I finally had a diagnosis! I wasn't crazy. I deserved respect dammit!! But I didn't have his.

A few months later his girl went back to her ex boyfriend and My husband began to "respect" me but I have to admit, that it is too little too late.

In the beginning he was there for me, and that is the only reason we are still able to maintain a friendship...because I do remember that, and I do appreciate the fact he is taking care of me financially until I can do so myself. It is why, every day, I try to earn my keep by cooking and cleaning, something I wasn't able to do when we were married.

We've been able to get back the friendship lost to some degree and I will always love him. I don't know what the future holds. I don't know if I'll be able to let go of the bitterness over some of the things he has done. I just...don't know anything really. I still get teary-eyed when I think about what could have been if I hadn't been ill. But for me, you really find out the depth of love someone has for you when something like this comes at you.

I respect the fact he hung in there at first. For five years we stood as a team and I can't compare that to what my boyfriend has recently done. It wouldn't be fair. I am very grateful that my boyfriend hasn't allowed me to crawl into a shell and consider my life over...especially since I am now published and feeling great most days. But I realize he also hasn't had to live with me either, and he hadn't been with me through all the years of illness without explanation. The level of frustration my husband had to feel, my boyfriend will hopefully never know.

That isn't to demean what he has done for me, which is more than I could have ever thought possible. It would have been so easy for him to walk away from me. We have a long distance relationship, a billion obstacles in the way of our happiness, and an open "if it ever gets to be too much, just tell me" understanding between us that would make it very easy for him to skip quietly away without hassle. And he hasn't.

Yes, Fibro cost me a marriage, a few friends, and a lot of respect...but I have gained too:

A diagnosis, a hope, a determination, love, and an understanding and appreciation of life and ambition I never had.

There will be times where I'm brought low, but I will always stand up again.

All my best to you, My Friends, and may life bring you a strong resolution and a sense of hope.
Gin

P.S. There are a lot of holes in the story but I had to write fast before I lost the nerve. Most of you know I went natural in my treatment to feel better when my daughter stirred me out of bed. She is at the root of my determination and deserves to be acknowledged by me on this post. ::Hugs all around::

Thanks for reading.

You're So Vain...I Bet You Think This Post Is About You.

2009-04-29T11:55:00.000-04:00

Carly Simon's song always pops into my head when I think about anything that could be remotely attributed to conceit.

A recent letter reminded me of my experience, which I'll share in a moment. For now, here's the letter:

Dear FG: (Fibro Gin)

I'm forty-two years of age and look like my mother who is sixty. I have noticed my age increasing three years for every one that has passed for the last five years. I was diagnosed with Fibromylgia six years ago. Premature aging is not on your symptoms list but I know I'm not the only one who has this problem with Fibromylgia.

Sincerely,
Premature-Ager

Despite the "Dear Abby" tone of this letter, it is one of my favorites so far. So thank you "PA"!

As a 34-year-old dating a 20-year-old, no one freaks out about premature aging more than me! I have the eye cream I rub underneath my eyes on bad days, and all the face masks at night. And I don't care what anyone says, my nightly rituals work.

But why did I go from not caring to freaking out? It has very little to do with the age difference between me and my present beau. It has nearly everything to do with the fact that I WAS looking old. My eyes were puffy and dark one day and I couldn't remember how they got that way. It was gradual sometimes but dramatic on others. What the heck was going on with me??

Then I caught some weird reality show which had a girl hopped up on oxycontin and pictures of her this year and the year before. WOW! What a difference. Pain relievers were her thing. She had an injury from a car accident (if memory serves) and she just couldn't get off of them. When her doctor stopped prescribing she mail-ordered them or bought them from friends who stole them from their parents, etc.

Duh! Fibromates for the most part, are not addicts. We feel pain, we take pain killers, anti-depressants, muscle relaxers etc. Taking these medications is legitimate for us, unlike junkies. But why do we think that because we're not junkies we won't start to look like junkies on the same or similar meds?

Natural products do not work for all Fibromates, so does that mean that those who are in too much pain without chemical treatments are doomed to look twice their age? No.

So what can be done?

When I asked "P.A" in a follow-up letter how much chemical vs natural treatment she has, she said she doesn't take any natural products because they "did nothing for her".

This is a common answer and a respectable one. We often get so frustrated when we try something that could possibly work for us (after all it works for "so and so") that we turn our back on it and think on it bitterly. (I'm a classic case of this. Anti-depressants and I are not kissing-cousins.)

But vitamins should not be used and then discarded when they don't show results. Why?

Or body needs vitamins. They don't harm us to take them, they can only help, even if not noticeably.

If you are a Fibro Patient, and you take a list of meds, chances are you might start losing some of that glossy shine on your face and skin.

What to do? Everyone has a few home remedies they could probably offer here. Oatmeal face masks, cucumbers on the eyes, avocado lotion applied twice or maybe a citric face peel. If you have something you use that works well feel free to share it! For me it is less about the natural age-fighting concoctions and more about getting into the habit of using them.

First: Take vitamins! Vitamin E in moderation is so good for the skin but having a healthy intake of all vitamins is a good way to keep your visual age down.

Second: Drink a TON of water. Nothing hydrates your skin more than keeping your body hydrated. (Do not become overly obsessive, just up the intake when you notice problems with your skin. Gaining a bladder problem by over imbibing water is counter-productive.)

Third: Wash your face at night and in the morning. Use creams and lotions to keep your face from drying out. Peels, microderm abrasion treatment...whatever you find makes you FEEL good. Part of looking good is feeling like you look good as well so do what you find appeals to you. It can be a texture or scent or...whatever. With Fibro we rarely feel good about anything. Train yourself to feel good about your outside even when your insides are "The Suck!".

Lastly: Use all of the above to create a routine. And know when you really need to get serious by the amount of drugs you take.

My Vanity Journey:

I was looking older than I felt on my good 98% days. I figured out they were around the time of month where I got my migraines due to menstruation. Yay..thank you mother nature! I have to take narcotics because nothing else takes them away. But I'd start to look awful by day four. Big bags under my eyes, dark circles...sallow appearance, dull skin.

So one day I went out and spent 100.00 at Sally's Beauty and one of those stinky stores with all the lotion products. For four months I tried a little bit of this and that until I noticed I was looking better than I had in years!

Talk about doing the happy dance.

This might sound selfish and vain to some people, but for me if I not only feel like crap but look like crap, I'll get more depressed. Once I get more depressed I lose my ambition. I stop exercising, I stop going outside, and I stop taking vitamins. I get in that rut of "what's it all for??" and that is a dangerous place for a Fibromate to be!

Though I tease and call my concern over how I look vanity, I truly think of it as self preservation. I don't need to look sick to be sick because I don't need to prove how I feel. I know it.

When I look better I have more confidence and that helps me when facing doctors, oddly enough. "I feel pain so you need to fix me and no it is NOT all in my head."

Looking good has so many benefits, so it is OKAY to worry over premature aging. It is also okay not to care! I figure I should throw that in there in case anyone is thinking I'm saying that everyone has to look hot every day.

The powers know that I look like crap on a cracker many days a month, and I'm not going to obsess about it, I'm going to wait until I feel better and then start the anti-aging battle again.

All my best, My Beautiful Friends.
Remember, there is more to beauty than just outside appearance, but there is nothing wrong with having a little bit of both!

Gin

Delayed Reaction

2009-04-27T12:12:00.000-04:00

Just a quick apology for falling down on the job lately. I've been getting a bunch of letters, my editing is taking up a lot of time, two projects are in completion, and my daughter has chicken pox! Gahhh.

At first we thought it was an allergic reaction to meds she was taking for a sinus infection. But when it worsened within six hours, we took her back to the doctor to have him basically say "oops, it is chicken pox". This is great considering we had taken her bowling and out to eat to get her mind off of the itchy allergic reaction she was having to her antibiotics!

Now that I know she has chicken pox, and will be closely watched day and night by me, (No sleep for me!) I'm thinking back to that little bowling trip and wondering...when will THAT pain kick in?

With Fibro, we deal with a lot of different types of pain, and one of the first indications for me that I had Fibromyalgia was the delayed reaction pain.

I was at an airport and I was lugging my heavy bags around on my shoulder for a good hour and a half. Two days later...I thought my arm was going to fall off!

I get a few letters that ask about delayed pain. The following was a letter I received last week.

Dear Gin,

I was wondering if you knew why I get severe pain that feels like I lift something when I don't. Any ideas why that happens?

Lucille

(How do I know this is a letter about delayed pain? Her P.S.)

PS: Did you ever get those tomatoes in? On Friday me and the kids made a garden.

To Lucille, and a few others who have asked this question in the past, No, I didn't get the tomatoes in.

Just kidding.

Why we experience delayed pain is often a subject of debate. There are many answers that I have read in research that ride the spectrum between blood flow slowing the response time to your brain (that's the non-medical jargon definition, lol) and something a little more complex that has to do with the state of your muscles. Chiropractors and general practitioners who know Fibro, often suggest conditioning your muscles.

After all, think about the type of people Fibromyalgia often effects. People who have had/or do have a debilitating illness, have been in a car accident, have had a baby, or have been in an extended state of depression throughout their life.

The one common denominator for all of the above Fibro Sufferers is the state of their muscles. No exercise or very little. Deteriorating muscle status. Fatigue and lack of energy that keeps the sufferer from exercising. When we can exercise...it hurts. Usually bad. And it sets us on a pattern of chaos.

For instance. I exercised daily for five minutes a day for a month. I lost weight, my fibro was nearly non-existent. And then I tried to up my workout. My neck and back killed me for a week and my flow was lost. Then I did that silly experiment to see just how effective vitamins were for me, and the month of March was hell!

I still suffer from Migraines due to my period now, but hopefully my vitamins will get me back on track again.

My point is, that one little muck up can throw a monkey wrench into our recovery/treatment. I should have pushed through the pain. Gone to a 2 minute work out or some such instead of baby myself and curl up in a pain ball.

But it is really...really...really hard to make yourself feel more pain with the vague promise of feeling better in the long run!

So for those of you who write me to tell me you do everything you can but can't exercise without pain, I do feel for you! Trust me. It is not an easy thing and if I have made it to sound as though it is, that is just my enthusiasm. I know it can feel good! But it has to feel bad first.

Okay, so back to the delayed reaction and why we get it, a friend of mine sent me a link to drcalrobbins.com. I'm looking forward to trying Chiropractic care again (this time with a better understanding of my own condition so I can look out for quacks) and found this little bit of information to be interesting.

I quote: "underuse of your muscles leads to a negative, detraining effect, which results in unfit muscles. Detrained, or unfit, muscles are more likely to become injured or damaged from exercise. This sort of muscle damage is commonly called microtrauma. All of us have probably experienced the effects of muscle microtrauma after exercising too vigorously. When microtrauma occurs, you experience delayed muscle pain that may not appear until 48 hours after exercising and may last 7 days. In addition to the pain, increased fatigue occurs, resulting in a lack of desire to participate in further physical activity until energy has been restored. It is common for anyone to experience the effects of microtrauma after too vigorous physical activity. Yet for people who have unfit muscles, these problems may develop after only slight exertion, such as routine day-to-day activities. Microtrauma may also result from overuse, or abuse, of certain muscles such as poor posture or damage caused by a blow or fall."

If you're anything like me, you'll wonder if Microtrauma is something this guy just made up. When I get curious, I Wikipedia! http://en.wikipedia.org/wiki/Microtrauma

Ever since that shampoo company with the "Pro V" came out pretending they had invented something rare and fantastic for hair that gives it an edge...I've been skeptical about termanology.

What is to stop anyone from saying "I invented Pro FC, the secret ingredient in my Fibro Sufferer Supplement, which gives my product the edge you need to treat your Fibro successfully." Pro FC just just "Pro Fibro Cure" but if I market it in such a way to make it sound like an ingredient...I've just made a bucket of money on my BS.

Okay...I am really digressing here. LOL. I get so mad about scams and advertising!

Delayed pain is normal for Fibro. We experience it either because of blood flow to the brain or lazy limbs, or something in between who knows. All that matters is that we all know feeling pain a few days after a strenuous activity is not abnormal.

All my best and hopes for 98% days,
Gin

The List Again

2009-04-19T11:53:00.000-04:00

Original post back in February. As requested I am reposting for the newer readers. I apolgoize for the delay, it has been a busy few days!

Take care, my friends,
Gin

This list is posted on about.com but has been meshed with a couple of other claims to Fibro symptoms to try to make it even more complete. I love that website as some of you know. It also has a GREAT Fibro community ,though sometimes there are a few depressing people there. The Board Guide does her job well, so its a pleasant support group for the most part. Check them out: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-chronicfatig

Without further ado, for your convenience, here's the "Monster Fibro Symptom List".

General Fibromyalgia Symptoms

Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate
Headaches/Migraines

Muscle & Tissue-Related Fibromyalgia Symptoms

Pain that ranges from mild to severe, and may move around the body
Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)

Sinus & Allergy-Related Fibromyalgia Symptoms

Allergies
Post nasal drip
Runny nose
Sinusitis
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (tinitis)
Thick secretions

Sleep-Related Fibromyalgia Symptoms

Light and/or broken sleep pattern with unrefreshing sleep
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night
Teeth grinding (bruxism)

Reproductive Fibromyalgia Symptoms

Menstrual problems
PMS (as an overlapping condition)
Loss of libido
Impotence

Abdominal & Digestive Fibromyalgia Symptoms

Bloating & nausea
Abdominal cramps
Pelvic pain
Irritable bowel syndrome (as an overlapping condition)

Urinary frequency Cognitive (fibrofog) Fibromyalgia Symptoms

Difficulty speaking known words
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings

Sensory Fibromyalgia Symptoms

Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light
Sensitivity to noise
Night driving difficulty
Sensory overload Paresthesias in the upper limbs(tingling or burning sensations)

Emotional Fibromyalgia Symptoms

Panic attacks
Depression (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability

Heart-Related Fibromyalgia Symptoms

Mitral valve prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

Skin, Hair & Nail-Related Fibromyalgia Symptoms

Pronounced nail ridges (Lack of whitish moons on fingers but dramatic on thumbs)
Nails that curve under
Mottled skin
Bruising or scarring easily
Hair loss (temporary)
Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)
Itchy skin

Miscellaneous Fibromyalgia Symptoms

Hemorrhoids
Nose bleeds

Where'd That Easter Egg Go?

2009-04-15T10:43:00.000-04:00

One of the common symptoms of Fibromyalgia is, of course, the Fibro Fog.

One second you will be holding a gallon of milk, pouring out a glass and the next you're walking away from it as if you just decided to forget it.

In the last couple of days I have ruined two gallons of milk this way. One I left on my daughter's shelf in her room for some reason and another I walked away from some time last night to discover it this morning. Brilliant Gin!

I often talk about one of my favorite magic tricks that I'm good at performing. It is called the disappearing Vacuum trick. I vacuum out my car and then get in, and BAM...the vacuum disappears...right under one of my tires as I back out over it.

Easter can get interesting too. You hide eggs for your kids or grandkids to find and...lose some. That "getting warmer" game doesn't work so well when you can't remember where you hid the eggs. In the next few weeks the smell will help me find them!

As light-hearted as this post is today, there is a serious side to Fibro Fog that is no joke. The Medication factor. Did I just take more than I should have?

Poison Control knows me well. I am not afraid to call them and it is one of THE best services that is offered for free. I can't tell you how many times I've stood in stunned silence after taking a pill and thinking...I did this already. Or did I? CRAP!

By the way, Poison Control's number is 1(800)222-1222. There are online alternatives but, in my opinion, nothing beats a human telling you that you're going to be fine.

So...

How can we fight the Fibro Fog?

I've asked a few Fibromates at a Facebook group that question, and some of them had good ideas.

Kathy Chapin of Chigago uses a dry erase board to keep track of things she needs to do and activities for members in her home. She even has it color coded, each person having their own color to make it even easier!

Marty Tanner of Seattle has a dry erase board on her door as well that he kids can write things she needs to remember on it. And like me, she uses her phone often.

For me, everything is in my phone. All my appointments. I set alarms at intervals because if I have an alarm that tells me I have an appointment in an hour...I'll forget the alarm ever went off and STILL forget the appointment. So, 2 hours...1 hour... and when I have to leave.

Lists, lists, and more lists. Elizabeth Sparham-Brouse from Ontario, agrees with me. She also openly asks everyone to remind her of things without being ashamed. And Susan Bibbins of Boston Mass makes sure to put these lists, not just anywhere, but in places she is sure to see them.

Gin Note: It is OKAY to tell people.. I've got the memory of a concussed goldfish. Remind me again what I was saying/doing.

Anna Kehoe Murphy from Albequerque New Mexico keeps a pill organizer and has a husband who will remind her to charge her phone.

Linda Jervis uses a key station; a place where the keys to her car goes right on the door so she never loses them. (Boy do I need to do that!)

Like Anna, Linda uses a pill organizer to take medications and that is a habit we ALL need to get in to. This is VITAL because of how dangerous skipping meds can be and even more dangerous when we over take them.

I usually use my phone alarm, once a week to remind me to refill my pill organizer and I don't shut off my alarm until I have the organizer in my hand and I'm hovering over the bottles.

Gloria from Michigan talked about having multiple calendars and date books, having an hour a night to coordinate all of them, make sure that wherever she was that day and wrote down on one, it would be in all, and after she is done writing in them, she puts them in the respective places immediately. One in her car, one in her home and one in her purse.

Teresa sent me a message telling me about how she writes down questions she has for doctors so she doesn't forget to ask anything. Likewise with business she writes down questions, or points she wants to make at meetings.

Joanna talked to me about having two or three egg timers on her stove, set at different minutes so if she forgets she's cooking and walks away, she is brought right back in time to save dinner.

After burning several dinners, I think this is a method I'm going to employ.

Bobbi Jo Youngs Stephenson of New York tries to keep her mind sharp just like I do, with puzzles and reading. (In my case I do a lot of writing and vocabulary work too as Fibro Fog makes me forget words I used to type often. Sometimes I'll get a word in my brain and over use it while writing. It drives me batty!)

There are so many ways in which we can fight the fog...we just have to get cell phone alarms or routines up and running so we can remember to do the things we need to do to remember. Haha! Try to make sense out of THAT! I dare ya.

I'd like to thank the ladies who responded to me in Facebook for the great advice, and I hope some of you found something that you could implement to help yourself out.

As always, My Friends, best wishes for those 98% days and a meal that isn't burnt!
Gin

Meet Jody Wallace

2009-04-12T15:07:00.001-04:00

Today there are many people who are celebrating Spring. Whether it is Easter or just the beauty of life or the inspiration behind the rebirth of Nature.

So I've been holding onto this interview for the perfect day to post it. A spiritual ritual deal for me, to show appreciation for what inspires me.

I don't know this woman nearly as much as I wish but I can tell you that the interactions I have had with her have always managed to inspire me towards better days. I think about what she has gone through and it makes me want to walk beside her if for no other reason than to absorb some of her strength just by sharing her space.

Life is what you make of it! Sometimes we have to fight for every scrap of happiness with the sadness pouring down on us. ...It seems impossible, but this woman is proof that it can be done.

My friends, allow me to introduce you to Jody Wallace. May you find her answers to my questions as inspiring as I.

Tell a little of your life prior to your Fibromyalgia diagnosis:

I had a great life before fibro. Pretty close to Leave it to Beaver except my Mom never wore pearls and dresses to dinner and my Dad was much more hands on and low key. Don't remember everything - lost a lot of memory from the encephalitis, but the basics. Born 1953, Milwaukee, WI 1 st child. Actually 1st grandchild too, so I was probably pretty spoiled until my brother was born in 1956.
Lived in a great home in the suburbs - lots of kids to play with a ravine and woods right in the neighborhood. We could walk to school if we wanted, although during the winter we usually caught the school bus. Grades K-8 @ Bayside School, 3.5 yrs @ Nicolet High, then a semester @ UWM(Milwaukee). 2 years @ UW Madison mostly being a hippy, not going to classes alot and finally flunking out.
Finally went back to UWM after 2 years of marriage and got a liberal arts degree in Comparative Literature. Finished 2 months before I had Jason. Lived w/then married my high school boy friend. Was verbally and physically abused by him. Had Jason 4 years later and realized as he got closer to 1 yr that I didn't want him to think that this was how woman should be treated.
[I]got some spine, called my Mom while my husband was at work and she came and got Jason and myself. We then lived my parents through the divorce (after getting a restraining order).
Met William on a blind date when Jason was 2.5 yrs old. Fell instantly and passionately in love (if he had known he would have run the other way as fast as he could).
He didn't & we got married when Jason was 5 and the 3 of us went on a 3 week honeymoon camping in various national Parks. It was the start of early trips to mountains.Activities at that time were : skiing (snow and water), hiking, swimming, reading, quilting, doing anything that was in the mountains.
During my childhood my family had gone to CO every Christmas and Easter vacations to ski. My grandmother owned a lake cottage 1/2 way between Milw. and Madison, spent a lot of time there, also at summer camps as I grew older.
BTW; I had Pre-Ecplampsia: during my pregnancy and was hospitalized for 3 weeks starting 1/20. they decided that they couldn't wait any longer and decided to induce labor on 2/9. Jason was born 2/10/79 1 full month premature, but weighing 5lbs 16 oz. so it was really good he came when he did. This could be a secondary cause for the fibro, but I really don't think so.

What event or malady led to your diagnosis:

[I] don't know how far back & detailed you want me to go, so for right now, I'll do the abbreviated version. 24 years ago, my family went to Mexico for Christmas vacation. We went with my parents, William, Jason (age 6ish). I had a bad cold on the way down. the last thing I remember is getting in a limo (my parents surprise) for the ride to Chicago. Don't remember the plane ride or anything else until I woke up in an intensive care unit at the Humana hospital in Mexico City 3 weeks later.
My family has pieced together what happened for me: We got down to Ixtapa had some fun days, then I insisted on walking into town w/Wm - about 2 miles - they believe I got sun stroke - I have no idea but, really can't imagine that...The next day, I felt lousy from the cold & stayed in bed all day. That night, Wm woke my parents up and said that he couldn't get me to wake up & he though i had a very high fever.
They did all they could cool towels and bath etc. In the am they called a Dr. Luckily there was also a Mexican Dr. staying at the complex with her (also Dr.) father. She kept coming to see me and eventually they arranged a fight for life to the Humana Hospital in Mexico City where they were on staff. The night that I arrived at the hospital, the Dr.'s told Wm & my parents that IF I lived through the night, I would most likely be a vegetable.
Anyway they finally diagnosed Viral Encephalitis and treated me accordingly. Wm barely left my bedside unless it was to spend some time w/Jason. He says that he talked and sang to me the entire time. Thank goodness my parents were there to take care of Jason.
My 1st real memory was waking up & seeing Jason being held up a the window ( My Dad was taking him back to Milw. so Dad could work and Jason go back to school). They finally moved me to a private room and about a week later they decided I was well enough to go home. 2 days later I was back in a hospital in Milw, for another 2 days probably for just being exhausted.I was home and in bed for about another 3 weeks gaining strength. I was SO skinny that everyone kept bringing me sweets - now I have the opposite problem!

Tell of the impact your diagnosis had on your familial and marital relationships:

This is interesting since I didn't think that the actual diagnosis, coming so long after the encephalitis made much of an impact on anyone, especially since for years it was pretty mild. So, today I asked William and my son Jason and they put me straight.
They said there isn't a day that goes by that they don't worry about me; especially days that are like today, where I am in constant & obvious pain. William being around more has a daily impact on my fibro life. He calls me several times a day especially on days he knows that I am doing something very physical, just to tell me he loves me and that if I feel up to it, he will give me a back rub or a foot rub or just hold me.
He also urges me to nap, doesn't care if the house is clean, laundry done etc. Jason, now that he has experienced the pain of major depression and attempted suicide has also become especially good about helping around the house (he and his wife are staying with us for several months until his depression is more under control).
My daughter-in-law also helps when she can and will offer to bring me tea and/or chocolate or whatever i need.My parents have worried about me non-stop since Mexico. They are always willing to go shopping for me or run whatever errands I need. My Mom also helps me get exercise, water walking in their apartment complex indoor pool. Something I probably wouldn't do if it weren't for her.So, I guess that the impact it has had on my family is much more then I recognized. Now I feel really bummed. I really thought I put on a pretty good show.

The moment you knew you hit rock bottom:

Actually the moment I hit rock bottom was in the last several months when Jason "came out of the closet" and told us about his many fights w/depression/cutting and attempted suicide. I have never been in such pain both physical and emotional. Especially now, with the 4 of us and 3 big dogs living in a space under 1200 sq. feet, things get a bit close now and then. I am in this weird netherworld of trying to be upbeat and always there for Jason and Coey (his wife).
I have taken on the extra burden of washing and organizing their clothes (we have so far brought over 20, 33 gal. trash bags full of laundry over and have not even scratched the surface of their bedroom or extra room). They are definitely stage 3 hoarders . while this is obviously not the most important thing that needs to be taken care of in their life, it needs to be addressed b4 they can move back to their own apt. Besides that I have increased many of my bills because their are now 4 people living here, constant laundry being done and they eat about 1/2 again as much as Wm & I do, so the grocery bills are more then triple what it use to be.
Of course, along with the need for extra cash, we have had a basic cut off from the largest single source of income for Wm. (He does a lot of work for Milw. County, when they run over their budget, which they did this year in early July, they don't pay their bill until after Jan. 1st. This year because they are waiting for federal $$$, they haven't even begun processing the paper work yet and can't say when checks will be going out.)Some place out there is somewhere between $25K & $35K, but we have no idea when it will be distributed. Of course since my work is tied in closely with the housing market, we've been slow too. Enter the bill collectors. What's a little more stress in the life of a Fibro sufferer.

Tell of your rise to the challenge of Fibromyalgia:

I don't honestly know that I have risen to the challenge of Fibro as much as fought it tooth and nail. I totally believe that your attitude each day drives the kind of day you will have. I have to be an optimist because if I wasn't I would never move out of bed.

Tell us of your life now with your relationship be it a good relationship with your family or romantically.

What I have every day [with William] is a total love affair. He is my best friend. Even if he doesn't understand what I'm going through, he is there beside me, helping me, encouraging me, some times laughing at me. The biggest regret I have is that the physical part of our relationship has declined so much. He is even understanding about that, and if a good night kiss is all that I can manage, then that's fine by him - at least he makes me believe it is.

I would like to thank Jody, from the bottom of my heart and all the way to the top of it, for sharing her touching...and sometimes scary...story with us.

I hope what people get from this interview is that it is possible, regardless of what is thrown at you, to survive and fight. Forget about what came before and how it went wrong, and work on what you have now, or want to have in the future.

Relationships can crumble, your health can deteriorate, but with the right kind of determination and positive outlook, you can change your world and find your personal William.

All my best to Jody and William.

I realize that I have just published some very intimate details about Jody and her circumstances and yet my own is still shrouded in shadows. My friends, I will tell you all about my journey, but today was a day for me to celebrate the life of someone who has touched mine! I hope she has done the same for you.

Here's to warm months of loving, learning, laughing, and positive thoughts!
Gin

Keeping The Smile On

2009-04-11T11:34:00.000-04:00

Happy Spring Time! Whether you celebrate Easter, or the Spring Equinox or the myriad other holidays around this time, I'm wishing you the very best. Because sometimes, in this time of Nature's rebirth, some of us are miserable!

Allergies are creeping in, making migraines easier to get and yesterday I saw the Spring's first mosquito here in Michigan. And I was the victor, Rawr! Feel my wrath!

So my subject today is to keep smiling through the changes in temperature and the typical worsening of symptoms. It is not going to be easy, my friends, as we all know but as I'm fond of saying lately: "This too shall pass."

It is only too easy to let our Fibro get us down but look through the list of supplements I've provided over the last few weeks and find something extra to help you fight it. Fatigue? There are plenty of energy supplements. Stuffy with allergies? Clean out your nose two or three times a day with a saline solution. It really does help to alleviate that bunched feeling in your nasal passages. Skin itching? I recommend getting an over-the-counter Eczema lotion that can help give your nails a break. Let me know what is wrong and I will scour my resources to see what we can come up with.

Through this bad patch, we have to fight more aggressively to get out our higher percentage days. You should see my nightstand table. Alavert (the strongest allergy med my body can kinda tolerate), my nose solution, my eczema bottle of lotion, my CryoDerm MSM topical pain reliever, Butalbital in case my migraines get too bad...a plastic bag...in case my migraine gets too bad, and a roll of toilet paper to blow my nose constantly. And that isn't including the vast amounts of vitamin bottles.

Oh yes... I am battling and not doing too bad this year, because through it all I am smiling, and that is what we all must do.

It will also help with those around you this holiday! When they see you smile, they will think you feel better.

Remember, it is okay if people take the stance "But you look just fine so you must feel fine". Sometimes ignorance is bliss to our families. We don't have to prove to anyone that we're sick. Be who you are. If you're hunched in pain, fine, you need to be and that is okay.. if you're in pain but walking with your head up and a smile on your face, it is okay that only YOU know just how brave and strong you are.

Well...you and all of us who suffer. It is a shame some of us do not have people who understand our condition fully in our lives. I have to tell you, one of my favorite moments lately was when I met a woman who I admitted I had Fibro to and she said, "and yet you're here with a smile on your face and keeping your pain in. That is such a huge accomplishment".

That is the kind of encouragement we all need. Recognition about what we have, and how well we are doing just to be out and about. The more respect we get the better we feel and the easier it is to keep the smile up front and the pain in back.

So this is me telling you that I am PROUD of those of you who come to the blog and read the advice and the supplements and use what you can every day to get out of bed and put a smile on for your husband, your children, your parents, your friends.

YOU are my inspiration, my army of positive fighters who push themselves every day. Your letters, your messages, your love and sometimes, yes even your anger, push me to encourage you. It's a very good circle to be in.

Enjoy the season start, my friends, and do so with a beautiful smile on your face.

All my best wishes for those (sometimes elusive) 98% days!
Gin

Losing Loved Ones

2009-04-07T13:27:00.000-04:00

I've heard a lot of stories from friends and strangers alike that has distressed me.

I talk often about staying positive and upbeat, which is a challenge when we have Fibromyalgia. The constant spikes of pain, fatigue, random strange symptoms...through all of that it takes a lot of strength to smile and push on. There are some days where we just can't push through it. We have a bad day and we crawl into bed, lament and cry and hope for a reboot of our system that has us feeling better come the next day.

Sometimes we have to break engagements. During flare-ups we sometimes break a lot more. It makes it hard to maintain relationships of any sort.

Friends stop calling because they're tired of being told "I'm not feeling up to it today". Family gets mad because maybe you're not as reliable as you once were. Spouses get mad...because you change, future dreams have to be lost and replaced and that doesn't always go over well.

Unfortunately, we're all human. Spouses are not infallible and they don't always take their vows literal. They love you, but as you were, not as what you've become. With Fibromyalgia, our personalities can change. Depression can bring us down and shape us into unhappy, bitter people if we're not careful.

There aren't many men or women who can handle constant negativity all the time. Which is why you hear me "preach" about being positive often.

I'm not 100% positive all the time. I get angry and mad. I'm human and that's what humans do. But I'm more positive than negative and the more bad something is the more determined I am to find the good in it.

I have Fibromyalgia and it is unfun. But I have a new appreciation for good days, life, and the world around me. I have a determination to become more than what I was to make every day a mission. Before I knew I had Fibro, I didn't have that. I just thought I was lazy and a complainer. Maybe it was normal to feel pain and I was just a big wuss.

I have Fibromyalgia, but I'm not dying from it, I'm living with it.

These positive thoughts can give you new goals, and these new goals can give you a healthier perception and disposition. A healthier disposition can only be a good thing.

If you've lost a spouse or a family members support or a friend, I'm not lying the blame at your feet. I want to make that very...very clear. I have zero respect for spouses who did not go the extra mile to try to help before they gave up, or friends who get mad and stop calling because you can't be there when THEY need you. The same with family members who roll their eyes every time someone talks about you and your condition.

There is no way in hell I am defending these types of turn-about supporters. However, I think it is our responsibility to recognize where we can fall short in these relationships and become better, healthier-minded people.

Fibromates don't always know when we're acting differently. We live in a world of pain and snap without realizing it often. So let me put some thoughts out there. Maybe they'll help.

-Try to keep track of your reactions to people. Are you getting an attitude at specific times of the day? When your pain is at its worse or right after a pain spike? Knowing when you get cranky can help you to better avoid an argument or make you more mindful of what you say at these times.

- Are you on medication that has mood swing side-effects that might enhance your irritation. Is there another alternative you can try? Or something that will off set the cranky-factor? Are you on a withdrawal from Narcotics? Knowing what is going on with your medication and why you feel the way you do (i.e. wanting to rip someone's arm off and beat them with it) can help you maintain control over your temper (to a degree).

-Get in the habit of apologizing and explaining. When you jump on someone. Say a boyfriend or girlfriend and you know you're wrong, don't just walk away mad. Explain. Even if you're still ticked off and screaming. "I know I'm being irrational right now but this is out of my control so if you could just give me some time I won't kill you!" Not that I've uh...said that or anything. But I have found that when I take just a second to let my boyfriend know that I know I'm being irrational it makes him feel better and he is more able to chalk it up to Fibro than think I'm just being mean. Later, once the wave of anger passes, I talk to him more calmly and apologize for the mood swing.

-Take part of the blame. "My Fibro made me do it" isn't always going to fly with the guy....or gal. Take some responsibility. "I get so tired and cranky and I don't always handle it well. I hope you know that I don't mean to drive you so crazy." Your other half or friend or family already know you have Fibro. When you say your Fibro did it all the time, they just start thinking it is an excuse you use to hide behind. You actually lose ground. So yes.. Fibro makes you cranky but you're the one they want to hear an apology from.

-Show that you are actively trying to take care of yourself. Vitamins are good for this too. It's a show of health consciousness that your friends/family/spouse need from you. When I lost the respect and support of my husband, I think a big part of it had to do with the lack of effort on my part. I was in pain! I was rolling around wanting to catch a break, complaining a lot, laying in bed a lot, getting a ton of headaches and we had no idea what was wrong with me. My doctors just treated me for migraines and told me to relax. That's what I did. And I did it too well. Eventually, he lost respect and we've been separated ever since. So no matter how horrible you feel, how bad and how hard it is to push...show some effort. Even if it is just swallowing a Vitamin D every day or some magnesium.

-No one likes a negative Nancy. Not even negative Nancies. We can't be positive all the time. Myself included. Some of my views and posts are not positive even though that is what I tout. There is a lot of negative about Fibromyalgia. (Conflicting opinions on healthcare, the constant pain and misconceptions, bad advice from those who are "Fibro Experts") I'm a big fan of being negative on negativity. LOL. It often gets me the most hate mail. HOWEVER, if you hear yourself saying what you can't do, what will never happen, and that you're trying the best you can (in defense) often and several times a day...you may be growing into a negative nancy. Don't panic! Just try and insert a little bit of positivity. "This too, shall pass."

We all can do something to better ourselves. Fibromates and Normals alike. There needs to be changes on BOTH sides in any relationship. If you can't do something because it hurts you, well the Normals in your life have to change and come to terms with that.

You're not the only one that will have to go through change and sometimes, that draws those we truly love and want to spend time with ... away from us. It is a horrible outcome...but one that if it happens, we have to face down and rise up again!!

Losing a husband or a best friend or a family member puts you in a state of mourning. And mourning takes time to heal. I would never suggest that the next day you get out of bed and sing with the birds near your window. Take some time to heal but always, always in the back of your head you have to tell yourself that you can make another life. A happy one, once the pain begins to dull.

It can happen, and in the next few weeks I plan to prove it to you with my story, and the story of a few others who suffered a devastating loss, only to recover and reclaim happiness.

As always, My Friends, I care so much about you and dearly hope you can take comfort and find inspiration in what you have read and will read here.

All my best wishes for 98% days every day,
Gin

All About Support Groups

2009-04-05T12:27:00.000-04:00

I received an email asking for support group advice since I "don't seem to care much for them" "Are there any that you do like?" LOL You know who you are. ::hugs:: It's a good question.

There are often times where you will witness me encouraging people not to listen to advice on their support groups for reasons discussed about one or two posts down. But that doesn't mean I don't think they have merit. They do.

So today I'm going to make a few notes on my views of Fibro groups, how to join them, how to get what you need out of them, and when to avoid them.

-I do not suggest joining every group of Fibro"mates" out there. (A little side note. I am not a big fan of the term Fibromites. It makes me laugh every time. Sounds like a bunch of fleas or something so I'm going with Fibromates. -grin-) It is good to want to be supportive of our condition and the people who suffer from it but at the same time, you need a safe haven: A place to go to relate to others. If you spread yourself too thin between groups you will find it is an all day job of keeping up with every social network you've set up.

-Set up camp. Trust is a huge factor when choosing your favorite support group or groups (I suggest no more than two) so join many...lurk for a while, see if you trust the advice that is being given. (The advice I'm referring to is medical. Personal opinion advice really depends on your personal views. If you're a religious person, you might want to choose groups that are heavy into prayer. If you're not singularly focused on religious aspects, but science, choose a group that is statistic and fact heavy.)

-After you've found a primary group, begin posting so you can become a fixture in that community.

-If your views come under personal attack, you can always change groups. That doesn't mean you should leave of course. Many of you know I'm constantly butting heads with someone and that doesn't scare me off. For me, I try to be diplomatic, recognize what I could have done differently, and apologize if I truly feel I was off kilter. HOWEVER, not everyone is able to be diplomatic and Fibromates are ofttimes hot-headed and unreasonable. (Come on! You know we can be ultra-sensitive. It's part of what Fibro is!) My point is, don't get discouraged by disagreeing with someone. A support group is meant to relate and relax. If you find you cannot do that, move on or lay low for a few days.

-The best function of a support group is to relate to others. Fibro patients have a lot of crazy things happen to our bodies. Some of them are more common than others. (Eye twitching, itchy skin, painful skin patches, red bumps, blurry vision, nasal drip...etc.) The uncommon ones are what we need the groups for "Does anyone have...". Posting when you've had the same experience or something similar is a gift you give the person inquiring. I'm sure we've all felt the relief that comes with someone saying "yes, I've had that and this is what I've done about it". This is what support groups are for.

-Secondary to relating is the "venting". It needs to be done but for me...I hate this aspect of the groups. Others find it invaluable and I can't blame them. But let me explain why I hate it so much. Let's say you're having a bad day. You've got so much pain you just want to scream so you go on a rant about how your husband(or someone) doesn't help you when you're feeling down, you can barely move, you hate your life, and sometimes you just want to scream and wait for it to all be over. The responding posts can go either way but OFTEN it goes down hill. Fibro patients are frustrated! We hate that we have this and there are times where we just want to ...GRRRRRRRR. So as I was saying, often the responses aren't... "Hey, you'll get through this, we're here for you, we know how you feel."

Instead it becomes. I know how you feel. I hate my life, I wonder why I have to have this, I don't understand what I could have done to deserve the constant pain. I wake up and can't move, can't get out of bed, my mother hates me, my dog pees on me...

Okay you can probably sense my agitation building. For me this is the OPPOSITE of help. I've jumped in on 3-4 threads like this asking everyone to reel it in. Always to extreme backlash so lately I've stopped doing it to give people a little break but something tells me, I'll get mad and do it again. And the reason I get mad is that this isn't helping anyone! It's okay to rant but wow! People need support groups to feel good, to relate and loooooong threads of everyone lamenting about how much their life sucks is frightening. Not just to me who sees all of these women and men give up but...too the recently diagnosed who read this and panic.

-So...for me, My Friends, I suggest avoiding these threads when you notice them pop up. It's okay to be supportive but the negativity will truly bring you down. I also suggest you listen with a careful ear to medical advice and alternative medicine inventions. Take note of people who make good comments, cautious comments, comment often, and are in general nice to others. Create a small list of those you trust instead of listening to all.

There's my advice! And truly, this is only my version. I'm sure many would disagree with me on a few points but for me, support groups in small doses! LOL

All my best wishes for 98% days,
Gin

Helpful Herbs for Fibro

2009-04-03T15:52:00.000-04:00

Noooo. You won't be seeing Marijuana on this list. Not yet anyway. Considering it hasn't passed many states' laws just yet and is still frowned upon in other countries...I think I will strive to keep my reputation such as it is and stick with herbs I know are legal. At least in the states.

Herbal Remedies can be just as good if not better than some of the chemical treatments Fibro Sufferers are on. But as always, ask your doctor about going off any medication to try something holistic. There are several different types of herbal medication that doesn't play well with chemicals.

For example: St. John's Wort should not be taken with an anti-depressant.

You all understand this by now, I know. But I'm always going to mention it. Check with your doctor, RA, nutritionist, Dietitian...grandma Ester...whoever you need to, to feel comfortable taking these drugs.

The list I'm about to give you comes from a mixture of sources. Each one seems to quote the other one with one word different in some cases so I'm going to list the resources and let the lawyers fight it out if they want to. LOL My backside is covered!

Prescription For Nutritional Healing by Phyllis Balch, CNC
Natural Treatments for Fibromyalgia on About.com
Treatment for Fibromyalgia on HolisticOnline.com
The Holistic Herbal Directory by Penelope Ody

I apologize if any of the information is repeated, as it is hard to follow so many sources...throw in a little bit of Fibro Fog and it's a bit of a messy list. LOL

St. John's wort - a natural antidepressant and influences the adrenal gland hormones to help relieve stress. St. John's wort affects nerves and is effective for sharp, shooting nerve pains. It also has antiviral properties. (Caution: Do not take if you are taking conventional antidepressants.) Choose a standardized extract containing 0.3 percent hypericin and take 300 milligrams three times daily.

Siberian ginseng - an energizing herb that can help resolve the fatigue associated with fibromyalgia. Choose a standardized extract containing 0.5 percent eleutheroside E and take 100 milligrams twice daily, one-half hour before breakfast and lunch. After two weeks, you can gradually increase the dosage as needed. After six weeks, take one week off, then take the herb for another six weeks.

Turmeric - to reduce pain and inflammation. Take 400 to 500 milligrams three times daily.

Cayenne, echinacea, goldenseal, astralagus, myrrh and chaparral - boost the immune system and improve circulation. Combine them as a tea or tincture. It may be helpful to mix it with juice for better taste.

Calendula taken orally in high doses has a positive effect in reversing symptoms of fibromyalgia.

A combination of burdock, slippery elm, sheep sorrel and Turkish rhubarb was shown good results in improving fibromyalgia.

Garlic is useful for detoxification and to enhance immune system function. Take 5,000 mcg of standardized allicin three times daily. Kyolic, aged garlic is preferred.

Ginkgo biloba improves circulation and brain function.

Devil's claw root is a natural anti- inflammatory used to treat rheumatic disorders. Take one 400 mg devil's claw root tablet daily. Studies suggest that taking the herb for at least six weeks can significantly improve the movement of arthritic joints and reduce swelling. (pg 151 of The Holistic Herbal Directory) Devil's claw can also be used as a bitter digestive stimulant for liver and gall-bladder disorders. CAUTIONS: Avoid in pregnancy as it is believed to stimulate uterine contractions; avoid in cases of gastric or duodenal ulcer as well!!

Willow bark has anti-inflammatory properties and works as a painkiller. The plant is used from relieving pain, reducing fever, and is helpful for rheumatism, gout, arthritis, feverish chills, and general headaches. CAUTION: Avoid in cases of salicylate allergy.

Passion flower, valerian and hops teas have sedating and muscle-relaxant properties.

Dong quai is good for fleeting muscle and joint pains, especially if they are worse in damp conditions. Take 1 capsule daily. For women only.

Licorice root - supports the glandular system and acts in the body like cortisone, but without the harmful side-effects. CAUTION: If overused, licorice can elevate blood pressure. Do not use this herb on a daily basis for more than seven days in a row. Avoid all together if you have HBP.

Milk thistle extract, artichoke, turmeric and dandelion supports liver function.

Dandelion reduces frequency and intensity of pain and strengthens the connective tissue. Take 1 tbsp. juice or 1 cup tea twice daily for four to six weeks.

Black walnut aids in removing parasites.

Paud'arco, taken in tea or tablet form, is good for treating candida infection.

Skullcap and Valerian root improve sleep.

Boswellia is excellent for morning stiffness and joint pain.

Calendula or rosemary oil (or a combination of both) diluted with an equal amount of water or veg oil when massaged into the skin can help relieve pain.

Teas brewed from burdock root, dandelion, and red clover promote healing by cleansing the bloodstream and enhancing immune function. Combine or alternate these herbal teas, and drink 4 to 6 cups daily.

Kava kava - decreases anxiety and elevates the mood.

Topical applications of cayenne (capsicum) powder mixed with wintergreen oil can help relieve muscle pain. Cayenne contains capsaicin, a substance that appears to inhibit the release of neurotransmitters responsible for communicating pain sensations. Use 1 part cayenne powder to 3 parts wintergreen oil. Cayenne can also be taken orally, in capsule form.

Pine-bark and grape-seed extracts are natural anti-inflammatories that help to ease pain. Take 50 milligrams of either two to three times daily.

Ginger Tea. Ginger is a good alternative to aspirin to relieve minor aches and pains. Steep 1 teaspoon of the grated root in 8 ounces of hot water for 10 minutes. Strain. Add honey for taste, if you like. Alternatively, take 1,000 to 2,000 milligrams of powdered ginger a day in capsule form with food. Gin Note: Honey, as any kind of sugar, has been reported to aggravate Fibromyalgia so use sparingly.

Curly dock - a cleansing herb suitable for chronic skin problems and arthritic complaints. It helps to clear toxins and acts as a gentle stimulant for the liver and kidneys. It is also laxative and stimulates bile flow, but is rather gentler than strong purgatives such as rhubarb, so it is one of the better remedies for use in pregnancy. Curly dock can also be used as a blood tonic in anemia and is a lymphatic cleanser, useful for swollen glands. It is an astringent remedy and me be used for wounds. CAUTION: Avoid regular and prolonged use in pregnancy and while breastfeeding.

If anyone is currently on, or trying any of these herbal remedies, I'd love to hear from you at FibroHelper@gmail.com

All my best, My Friends,
Gin

A Friendly Reminder!

2009-04-03T00:06:00.000-04:00

I received two emails lately that have made me a little worried.

You all know how much I love, and live for, giving advice. Most of it is unsolicited on facebook comments or in private instant messages. I always try to be informative and clear in my suggestions. Also, I hope you all know that I always want you to double check what I've said with doctor's, nutritionists, dietitians, RA's, and Neuros.

A person not in any of these fields has to give advice carefully and thoroughly and always.. ALWAYS make sure to say something like...ask your doctor first or...check with a pharmacist about the side effects to your drugs, and so on.

Now before any of you worry about me, My Friends, don't. This isn't a "whoops Gin" moment. Newp...this is about support groups. Once again, the support group striketh!

Bad bad bad advice!

On a few loops and groups I've noticed a trend of "I've had Fibro forever so I know all about it" attitudes that have caused a bit of trouble.

Now I could let Evil Gin out to play and tear into these people, but last time I did that the backlash was harder to fix than if I just let the bad advice go. The comments that came at me was: "She was just trying to be helpful and you attacked her. How can you claim to be positive and be so negative?" People just don't realize the repercussions of bad advice and what it can do to someone. Yet I was the bad guy for pointing out the error.

Ohhhh let me tell you, Friends. It is a good thing Evil Gin was kept at bay by the constraints of the Internet, for if this had been a personal confrontation, Fibro Gin might have been Incarcerated Gin.

LOL

The truth is, there is one thing I can't stand, and that is obvious, horrid, HARMFUL advice. We've all given bad advice before I'm sure. Even if it was unintentional and something as simple as misunderstanding what the person was actually asking or meaning.

Hey, it happens.

I personally have butted in on pain rant conversations to try and pep people up and it has not gone well. Ha!

But here's the thing...drawing on your own experiences is fine, but you should say "this is what XYZ does to me and the reaction I had to it, maybe you're experiencing an allergic reaction" if you want to be cautious you should add a "check with your doctor". What ISN'T Okay is pretending that you know everything about a drug, or a supplement, when ALL you have to reference is your personal experience! "That is an allergic reaction. Stop your medications immediately!" That is not okay!

The situation was anti-depressants.

You all know I am not a fan and I do not react well to them but I never, NEVER tell people to stop taking their medication unless they consult their doctor and I usually only suggest that if they are complaining about the side effects. (Meaning my personal preference against them does not influence my advice) I also make it clear that the "quitting process" should be gradual and not abrupt just in case they don't consult their doctor (which is extremely unwise and harmful to the doctor/patient relationship).

This...person...told a Fibro Patient that her anti-depressant was causing the bumps on her legs and to toss her medication now. She then began to list all of the frightening things that could go wrong with this "allergic" reaction and urged the Sufferer to "throw away" her unused meds.

That was about two weeks ago I'm guessing(the email was a little unclear on time frame) as the Sufferer has now come to me after this ...person... claims that throwing away the meds is what her doctor told HER to do so that is why she told this Sufferer to do it. And she can't figure out WHY the sufferer is having breathing problems and heart palps and panic attacks and migraine headaches.

So, as I was saying, the Sufferer comes to me. Her doctor is angry with her, her RA who prescribed the drug is angry with her and is booking appts. 2 months in advance and the Sufferer is in so much pain she can't get out of bed. Not only has her flare-up worsened but she has taken a big step back from her relationship with her doctors, AND she's going through a withdrawal.

Now, my friends, before you think she was silly to listen to this...person...it is important that we keep a few things in mind. New Fibromyalgia patients are more inclined to listen to their peers than doctors. Especially if they have a history or misdiagnosis.

Fibro Fog can also make us a little unclear and irrational, especially if we have strange symptoms. There are also some in the elder crowd that don't understand the Internet as well as the younger crowds and when they get advice from someone claiming to be a "lifetime FMS Sufferer/expert" they might be inclined to listen and follow the "expert" advice.

Factor all of that together and you have one scared woman who thinks her medications are killing her.

Now she is asking me what to do. If she had come to me before I would have given her better, positive advice that wouldn't have sent her into a freak-out session that had her throwing out her meds!

But she didn't. And I'm not a doctor, nor a nurse, and my hands are tied.

I've given her all the home remedies for pain etc. The MSM trick I've found and the whole bit but here I am, frustrated...angry and yet a little hopeful that this woman's disaster might save someone else from listening to bad advice just by me ranting about it.

I can talk about it here because this isn't where she found me. Blogs are a little out of her realm right now. The second incident of bad advice I can't talk much about since the chances are good the victim and the ...person... might be watching. Luckily, that one wasn't as serious.

This post is a little big Rant-a-doodle and I'm sorry for that.

I just really need to stress to all of us the importance of the advice we give. Myself included! It is never good to be complacent and to fall into a pattern that could have us harming someone with our indifference or lack of attention to detail.

Fibro is a vicious syndrome that baffles even the professionals so wrong advice is tooooo easy to give. Knowing this we should all be more careful in what we say...and in what we listen to.

As always, My Friends, I have your best interest in my heart....truly.
I hate the thought of any of you falling victim to bad advice!
Stick with who you trust, even if it isn't me!

All my best,
Gin

Fibro Vitamins Part 3!

2009-03-31T16:37:00.001-04:00

We've done the essentials, we've done the very importants! Now the last on the list is the plain "important" vitamins that one should/could take to aid in their battle against Fibro.

I want to stress again that these vitamins are a pick and choose. NOT a take all of these every day. Haha. You'd have to bring a purse of vitamins with you wherever you went and every 10 minutes take something! Yikes.

Treat the symptoms that are bothering you the most! Remember to ALWAYS CHECK DOSAGES with your doctor despite what this book states.

List of Important Vitamins from the Prescription for Nutritional Healing by Phyllis Balch: (Buy the book, you'll be glad you did!)

Supplement: Calcium
Dosage: 2000 mg daily
Reason: Needed for proper functioning of all muscles including the heart; relieves muscle spasms and pain. Deficiencies are common in people with this disorder.

and

Supplement: Magnesium
Dosage: 1000 mg daily

and Supplement: Vitamin D3
Dosage: 400 IU

OR

Product: Bone Support from Synergy Plus
Dosage: As directed on Label
Notes: Contains, calcium and magnesium pluse other minerals to aid absorption.

take this Bone Support with
Potassium (99mg daily) for proper muscle function and selenium (200 mcg daily unless you are pregnant. Then no more than 40 mcg.) Selenium is an antioxidant. Also take Zinc (50 mg daily without exceeded 100 mg daily taking in consideration all daily vitamin zinc counts) and copper at 3mg daily. Zinc is needed for proper functioning of the immune system and the copper is needed to balance it.

Supplement: Capricin from Probiologic or Probiata from Wakunaga
Dosage: As directed on label.
Reason: To combat candida, which is associated with Fibro.

Supplement: Chromium
Dosage: 200-400 mcg daily.
Reason: To help balance blood sugar levels and aid in preventing night sweats.

Supplement: Creatine
Dosage: As directed on label. Do not take with fruit juices, as this combination produces creatinine, which is difficult for the kidneys to process.
Reason: To combat muscle depletion. Should be used in conjunction with a balanced, nutritious diet.

Supplement: DL-phenylalanine (DLPA)
Dosage: 500 mg daily every other week.
Reason: Can be very effective for controlling pain. Also increases mental alertness.
CAUTION: Do not take this supplement if you are pregnant or nursing, or suffer from panic attacks, diabetes, high blood pressure, or PKU.

Supplement: Essential fatty acids (black currant seed oil, flaxseed oil, Kyolic-EPA from Wakunaga or primrose oil)
Dosage: As directed on label three times daily with meals.
Reason: Protects against cell damage and helps to reduce pain and fatigue.

Supplement: Fibroplex from Metagenics
Dosage: As directed on label.
Reason: A formula containing vitamins B1 and B6 plus magnesium, manganese and malic acid.

Supplement: Fibro-X from Olympian Labs
Dosage: As directed on label.
Reason: To relieve pain. Contains many nutrients listed in this label plus shark cartilage.

Supplement:Gamma-amino-butyric acid (GABA) or GABA Pluse from Twinlab
Dosage: As directed on Label
Reason: For proper control of brain function and to control anxiety.

Supplement: Kelp
Dosage: As directed on label.
Reason: Contains minerals that support the throid.

Supplement(s): L-Leucine, L-isoleucine, and L-valine
Dosage: 500 mg each daily on an empty stomach. Take with water or juice. Do no take with milk. Take with 50 mg of vitamin B6 and 100 mg vitamin C for better absorption.
Reason: These amino acids are found frimarily in muscle tissue. The are available in combination formulas

plus L-carnitine as directed on label to increase energy.

Supplement: L-Tyrosine
Dosage: 500-1000 mg daily at bedtime
Reason: Helps to relieve depression and aids in relaxing the muscles.
CAUTION: Do not take this supplement if you are taking an MAO inhibitor drug.

Supplement: Melatonin
Dosage: As directed on label 1-2 hours or less before bedtime
Reason: Promotes sound sleep. A sustained release formula is best. Take a sublingual form during the night if you wake up and cannot go back to sleep.

Supplement: Multivitamin and mineral complex
Dosage: As directed on label
Reason: All nutrients are necessary in balance. Use a high-potency hypoallergenic formula.

pluse carotenoid complex (Advanced Carotenoid Comples from Solgar) at 15,000 IU daily.

Supplement: Ocu-Care from Nature's Plus
Dosage: As direct on label.
Reason: Contains essential nutrients to protect and nourish the eyes.

Supplement(s): Raw thymus glandular and raw spllen glandular plus multiglandular comples
Dosage: As directed on labels.
Reason: To boost the immune system.

Supplement: Reishi extract
Dosage: As directed on label
Reason: A mushroom extract that helps the body deal with stress and increases energy levels.

Supplement: Taurine
Dosage: 500 mg daily on an empty stomach.
Reason: An important antioxidant and immune system regulator necessary for white blood cell activation and neurological function.

Supplement: Vanadyl sulfate
Dosage: As directed on label
Reason: Protects the muscles and reduces overall body fatigue.

That finishes the vitamin list!
All my best, My Friends!
Gin

Busy Bee. My Apologies!

2009-03-29T00:00:00.000-04:00

I've told a few of my friends that I pulled a muscle in my shoulder but not many. I was spring cleaning and thought "Why break things up? Why not get it all done...today!"

As many of us know, that's probably the silliest thing I could have done. I woke up that night unable to move and I've been miserable for the last few days. Ugh!

Which brings me to a good point. Over-exerting while pushing ourselves to the limit is a fine line and when we get cocky and cross it, we do ourselves in.

I'm constantly saying "push push" but what I should be saying is "push...wisely". I knew I should only do the sweeping one day and the mopping the next and the vacuuming after that but NOOOOOOOOO. I guess I thought I haven't been in enough pain lately. What with having mostly 98% days!

So I'm trying this new pain reliever for those of us who react badly to narcs. MSM(You may recognize this from the list of supplements good for Fibro). The "roll-on" version that I have (think deodorant haha) is called CryoDerm.

It states that it is greaseless and that's true. Fast relief...ehhh not so much BUT..it did clear my sinuses. That's kinda nice.

The sharpness of my pain did decrease decently though, so I'm optimistic. Woot!

I will continue with the "important vitamins" list tomorrow if the weather and my deodorant cure allows it.

I miss you all,
As always, I hope you are having 98% days!
Gin

I'm just now

Fibro Vitamins Part 2

2009-03-25T14:34:00.000-04:00

I'm feeling a little uncoordinated today. I hate those days where your mind feels sharp but your body is a little tardy on the brain commands. I just spilled an entire glass of merlot all over my dining room. Apparently, Merlot is made of rubber, because those droplets bounced all over the place when it splattered. I mean how do you spill something UP? The wine bounced from the floor up underneath my table. What a fun mess to clean up first thing in the morning. That'll teach me to leave glasses lying around until morning won't it?

All right, back to "the list" of vitamins taken from Prescription For Nutritional Healing by Phyllis Balch CNC.

Last time I covered what is considered "Essential" vitamins to take. As I stated, the list goes in order: Essential, Very Important, Important, and then Helpful. But with Fibromyalgia, there is nothing lower than Important.

Today's List is Very Important.

Supplement: Dimethylglycine (DMG) (Aangamik DMG from FoodScience of Vermont)
Dosage: 50 mg 3 times daily.
Reason: Enhances oxygen utilization by the muscles and destroys free radicals that can damage cells.

Supplement: 5-Hydroxy L-tryptophan (5-HTP)
Dosage: 50 mg daily for 1 week then increase to 100mg daily.
Reason: Enhances synthesis of serotonin in the brain. Excellent for pain relief.
CAUTION: Do not use if you take an MAO inhibitor, commonly prescribed for depression.

Supplement: Free-form amino acid complex (Amino Balance from Anabol Naturals or Amino Blend from Carlson Labs)
Dosage: As Directed on label.
Reason: To supply protein essential for repair and rebuilding of muscle tissue and for proper brain function. Use a formula containing all the essential amino acids.

Supplement: Garlic (Kyolic from Wakunaga)
Dosage: 2 capsules 3 times daily.
Reason: Promotes immune function and increases energy. Also destroys common parasites.
plus Kyo-Green from Wakunaga
Dosage: As directed on label.
Reason: To improve digestion and cleanse the bloodstream.

Supplement: Grape seed extract or Pycnogenol
Dosage: As directed on label.
Reason: Powerful antioxidants that protect the muscles from free radical damage and enhance immunity.

Supplement: Methylsulfonylmethane (MSM)
Dosage: As directed on label.
Reason: Provides support for tendons, ligaments, and muscles.
Note: Because this supplement contains sulfur, you may notice an odor to your urine.

Supplement: Methylsulfonylmethane (MSM)Cream
Dosage: As directed on label.
Reason: Relieves Pain.

Supplement: S-Adenosylmethionine (SAMe)
Dosage: As directed on label.
Reason: Aids in relief of stress and depression, eases pain, and produces antioxidant effects that can improve the health of your liver.
CAUTION: Do not use if you have manic depressive disorder or take prescription antidepressants.

Supplement: Vitamin B Complex injections (with Vitamin b6 and b12 and raw liver extract [which is a source of iron as well as B vitamins so be careful])
Dosage: As perscribed by a physician.
Reason: Essential for increased energy and normal brain function. Injections (under doc's supervision) are best. All injectables can be combined in a single syringe.

OR

Supplement: Vitamin B complex.
Dosage: 100mg of each major B vitamin 3 times daily with meals. (Amounts of individual vitamins in a complex will vary)
Reason: If injections are not available or once the course of injections has been completed, use a sublingual form of all the B vitamins listed.

(GIN'S NOTE: B vitamins give some people a bad reaction for some reason. I've heard of the following allergic symptoms: Chills, Fever, Itchy skin rash, headaches and nausea. You can try switching your B complex or stop them all together and take the B vitamins separately, one at a time per month to see which is giving you the reaction or if it is all of them.)

I will do the important list soon but I have to say, if you have the money you should buy this book. It has a lot of great supplements in it and the reasons you should take them for a ton of different conditions! It's fabulous.

As always, My Friends, take care of yourselves.
All my best,
Gin

Fibro Vitamins

2009-03-23T13:08:00.001-04:00

As any of you who have visited this sight more than once or read any of my posts on groups or loops know, I'm a huge believer in vitamins and nutrition. I've even thought about going back to school to get a degree in nutrition but I'm a little concerned about my ability to concentrate. It's bad enough I'm an author who is at the whim of my Fibro Fog but I'm able to write around my episodes. Something tells me a college professor might not care. Haha. But I digress.

This past week I've been doing a little Anti-Vitamin experiment. I've seen a lot of claims by Fibro Sufferers that vitamins do nothing for them and they feel the same on them as they do off.

My answer to them has always been. "It can't hurt. You're giving your body the vitamins it needs which in the long run can help you absorb your medicine better or give you that extra boost of energy."

But as we all know, Fibro Sufferers are very stubborn. If we want to believe something, no one will change our minds. It comes from years of having to fight doctor's and loved ones just to get a correct diagnosis. "No, I'm not crazy, something IS wrong with me."

So I decided to set my stubbornness aside and go off the vitamins for a week to see what happens. I swore to myself that I would be objective. I'd tell no one what I was doing so no one could influence me with opinions either.

At first, I have to admit, that I saw no change. I was disheartened and thought, what the hell am I taking all of these damned vitamins for if they're doing nothing!!! (Language, Gin! But I was frustrated.)

I even, sad to say, felt a little bit better. The first two days I felt the same but the 3rd and 4th day I felt awesome!

And then reality came crashing back. I burned out all the good stuff. It was as if those fantastic two days were a last ditch effort of my body. The two drops of gas before the car stalls.

I'm sitting here in front of the computer right now with frozen peas on my head to calm my raging migraine! My shoulders are killing me. My hips and knees have shooting pains and my costochondritis is acting up. I feel....horrible.

Why the hell did I do this experiment!?!

lol. Honestly, I'm glad I did. I've heard so many "bad" things about how taking vitamins made people feel worse or did nothing for them, I started to wonder if Vitamins were working for me on a strictly placebo basis. I mean I knew they were helpful for my body but...for my Fibro? There's no proof of it.

Until now. Obviously I can't speak for everyone but I can say for sure just how much my body has suffered this week+. I had no energy to write. Not in my book, not in my blog. And that is a bad sign for a writer, my friends.

It could be argued that the reason I feel horrible is that I was on vitamins so long "of course" I was going to notice their absence. But this argument, to me, is silly. Our body needs vitamins. If we don't get it through normal means then we have to pop them in pill form. Or better yet...liquid. Fibromyalgai patients have issues with absorption. Because of this, liquid vitamins is THE way to get the effect of what we're taking.

Now, all of this being said.. it's time to get to the list I've been promising.

I was talking to a nutritionist, wanting to find out what I would have to do to become one, and he recommended a book called Prescription For Nutritional Healing by Phyllis A. Balch, CNC.

I love this book! It was the reason I decided to do my little experiment, because the vitamin regimen is so extensive and different, I wanted to cleanse my system before introducing new things. The book lists Vitamins in the following categories: Essential, Very Important, Important, and Helpful. It also lists some herbs as well which I'll post later on.

This is a long list and it explains what each vitamin does, so I'm going to break the list up over the next few days.

Today is the ESSENTIAL Vitamins: (and they won't be what you thought!)

Supplement: Acidophilus or bifidis.
Dosage: As directed on label.
Reason: Candida infection is common in people with fibromyalgia. Probiotics replace "friendly" bacteria destroyed by candida. (Use a non-dairy formula.)

Supplement: Coenzyme Q10
Dosage: 75mg daily
Reason: Improves oxygenation of tissues, enhances the effectiveness of the immune system, and protects the heart.

Supplement: Coenzyme A (from Coenzyme-A Technologies)
Dosage: As directed on label.
Reason: Works with coenzyme Q10 to increase energy supply to the cells.

Supplement: Lecithin
Dosage: As directed on label with meals.
Reason: Promotes energy, enhances immunity, aids in brain function and improves circulation.

Supplement: Malic acid and Magnesium
Dosage: As directed on label.
Reason: Involved in energy production in many cells of the body including the muscle cells. Needed for sugar metabolism.

Supplement: Manganese
Dosage: 5 mg daily. Take separately from calcium.
Reason: Influences the metabolic rate by involvement in the pituitary hypothalamic-thyroid axis.

Supplement: Nicotinamide adenine dinucleotide (NADH) (Enada)
Dosage: 10-15 mg first thing in the morning on an empty stomach.
Reason: Increases level of energy.

Supplement: Proteolytic enzymes or Inflazyme Forte from American Biologics or Wobenzym N from Marlyn Nutraceuticals.
Dosage: As directed on label, 6 times daily, with meals, between meals, and at bedtime.
Reason: Reduces inflammation and improves absorption of foods expecially protein, which is needed for tissue repair.

Supplement: Vitamin A with mixed carotenoids
Dosage: 25,000 IU daily for 1 month, then slowly reduce to 10,000 IU daily. If you are pregnant, do not exceed 10,000 IU daily.

use with:

Supplement: Vitamin E
Dosage: 200 IU
Comment: Use d-alpha-tocopherol form.

OR

Supplement: ACES + Zn from Carlson Labs
Dosage: As directed on label.
Reason: Contains Vitamins A, C, and E plus the minerals selenium and zinc, to protect immune function.

Supplement: Vitamin C with bioflavonoids
Dosage: 5,000 - 10,000 mg daily.
Reason: Has a powerful antiviral effect and increases the body's energy level. Use a buffered form.

That is the list of essentials.
Considering I take about one of them...I figure I might have to shift things around, see if any of these supplements can help with Fibro Fog and morning stiffness and energy.

Once I get all of these things I'll keep you posted!

Remember, if you're taking a vitamin and it works for you, you shouldn't change to this list unless it is something you want to try. If headaches are big problem for you, take vitamins that will help more with headaches than general Fibro woes.

As always, my friends, be well, be positive, and have 98% days.
Best,
Gin

If You're One Of My Facebook Readers...

2009-03-21T22:59:00.000-04:00

Just a quick reminder to sign up for the Fibromyalgia and Chronic Fatigue Awareness Day Event! If you haven't received an invite, email me at Fibrohelper@gmail.com or send me a message on facebook.

All My Best,
Gin

Reviving "The Idea"

2009-03-20T12:24:00.000-04:00

I received an email from a new reader today, asking me about my idea that I had back in February. She liked it, and wanted to be a part of it.

She's also the first one to have noticed it and spoken to me about it.

I've pushed it way back on the Gin Train because in truth, I don't think I can do it alone. As I've mentioned before, I'm really, really busy with my writing career right now. I have three WIPs I'm working on (Works In Progress) and a novella I'm editing for publication as well as a full-length romance I'm trying to sell to an Agent. All of this while keeping The Fibro Fight blog going and keeping up with my Fibro support systems. Did I mention I am home-schooling my 4 year old? I've bitten off the side of my house and I'm trying to chew it.

Being busy, though, keeps me from feeling sorry for myself. It keeps me from focusing on the negative aspects of my Fibromyalgia which in turn makes my Fibro feel better. Win/Win!

Okay so...what idea am I talking about?

In February I was discussing mourning the life we had. How I hated that term really and wanted everyone to turn their focus away from what they don't have anymore to what they could have.

"I thought about opening an online shop where other Fibro patients who crafted things at home, sewed clothes, made toys, made jewelry, etc could all come together and sell their wares while raising Fibro Awareness. I thought about Fibro Patients who don't craft, coming along and helping others at flea markets, state faires... as well as other venues by writing up pamphlets, baking goods, managing the online stores. I had this idea...but haven't acted on it yet because I've been busy with my writing but I haven't given up on it. Myself and other Fibro sufferers could really get this off the ground and make something out of it so we could travel, have fun, bring awareness about our condition, demand answers by being in the limelight."

That was a rough outline of my idea. Now, even though only one person has expressed an interest, I have a fire under my generous backside to give it a shot. It'll take me a while to get things up and running due to time restrictions but hey, I won't always be busy and I'll just have to schedule my time better.

YOU can help too.

Why would you want to? No matter what your angle, your level of expertise, your level of involvement, I can guarantee you that you'll feel better being involved in something that is "big picture" in the fight against Fibromyalgia ignorance.

You don't have to be a knitter, a toy maker, a jewelry designer to help.

We need lots of things to get started. People who want to help advertise, to recruit Fibro patients who ARE crafty and want to work from home, to help with design decisions, to help schedule events in different states, to keep up with The Fibro Fight roster, to keep up with the websites and blogs (facebook, myspace, twitter, etc).

There is SO much to do in order to get the idea off the ground that anyone involved will be kept busy.

Have an area of expertise (i.e. web design, marketing, a craft)? I'd love to hear from you.

You don't have to have Fibro to be involved either. If you have a loved one who has Fibro and just want to help you're just as welcome as Fibro Patients.

This is an idea in the infant stages. I have no idea if I can actually pull it off solo. But I know WE could.

If you're interested, send me an email at FibroHelper@gmail.com. If I get enough response we'll get cracking!

Tomorrow I'll be posting that promised list of Fibro Helping vitamins. Honest!

::Laughs::
Spread the word, My Friends, and as always...have a 98% day!
All my best,
Gin

**Disclaimer on all typos! I type too much to be accurate. ::wink::

Know Thy Enemy

2009-03-19T16:58:00.000-04:00

This is the fourth draft of this blog post, which is a first for me. I don't usually rein myself in. I just post and leave it as is. But under the title "know thy enemy" I began to digress, a lot. I had so much information and personal opinion that I don't think anyone would have read the novel.

So I'm going to try to break up my thoughts a bit and stick to the basics.

Our enemy is Fibromyalgia.

The biggest problems with Fibro are:

-Fatigue
-Body Pain
-Digestive health
-Female (hormonal) issues
-Migraines
-Allergies

There are many other "sub" issues but for now, I'm sticking with this list of problems to use in my example.

I spoke last time about knowing yourself and your symptoms.

Once you know the symptoms that plague you the most you have to do a lot of research. Find out everything there is about the symptoms and what else besides Fibro they could be. Just because we have Fibro doesn't mean everything is related to it. (Although as most of us find out after a bunch of tests...it usually is "just Fibro".) We always have to error on the side of caution though.

Then you have to start your treatments. Let's take IBS for example. First you have to make sure there is nothing wrong with your intestines, your liver, your kidneys, your stomach, or your colon. Once all of that is determined in working order, you then have to start working on the treatment of IBS itself. Dramatic dieting? Pill popping before every meal? A little bit of both?Whatever works best for you. For me, my treatment was dieting. I ate a lot of zucchini bread, sour dough muffins, and chicken with rice. I couldn't step outside of that for months. If I did, I was sick again.

But one day, I treated myself for a yeast infection and my IBS started to improve. It's been over a week now and I was able to eat a hamburger and... Taco Bell!! (Not that I should have, mind you. Slipping once I showed improvement could have put me right back at the starting gate and is not a smart move. Still.. Taco Bell is my Achilles Heel and after four days of solid movements, I made a run for the border.)

Why did this work for me? Is there some link between IBS and yeast infections that come and go often with me ever since giving birth to my daughter? I don't know. I'm in full research mode to find out why my body reacted the way it did.

This is what everyone should do. The moment something starts to make you feel sick, you do research. If you stumble on something that makes you feel better...you do research.

This is KEY to knowing how Fibro affects YOU PERSONALLY.

The more research I do, the more I realize the intricate web that surrounds the deviant core of Fibromyalgia. Our conditions are as different as our fingerprints and yet the things that we feel relate so well to one another.

What does this mean?

There are too many variables for advice to be universal. What works for one person could harm another. We can learn from others and try what works for them for ourselves but we have to keep in mind that someones regimen of diet, exercise, vitamins, supplements, pharm drugs has a lottery chance of working for us.

There are other factors to Fibromyalgia that you won't find anywhere on the internet except here. The condition in which you keep your body, and the determination you have to fight it.

Those are two factors that most Fighters do not take into consideration. You can have Fibromyalgia and be seeking treatment, but if you're allowing your depression to bring you down, you're doing as much harm as good. The medications you take are locking horns with your lack of hope and depression and poor health habits.

You can take all the medications you want but they'll have little to no affect without the right attitude, the right inspiration, and the determination to get better. These factors are the key to success when learning about how to fight YOUR Fibro.

Having said all of this, those of you who know me know that I have to say despite the "Fight Fibro Your Way" message here, that I still believe whole-heartedly that in order to Fight Fibro successfully, you must make sure your body is well armored.

Take your vitamins, eat better, exercise a little. Give your body the leg-up in the form of being full of vitamin goodness.

As always, my friends, I'm here to help, encourage, answer questions and give some head-smackings when needed...taking my own as they come as well.

You are my inspiration to keep up the 98% days, and I thank you all.

My best,
Gin

New Poll!

2009-03-18T19:42:00.001-04:00

I'm sorry I was away for so long. It'll happen from time to time when I must edit or go to conferences or when I get "Migraine Week" about twice a year.

In my down time away from the Internet, I do a lot of reading. I've learned of some new vitamins that could really help out fibro patients that I don't already take. I'm going to be tweaking my regimen and I'm going to share it with you.

Also, an update on my war against IBS! I'm doing really, really well. I actually ate a cheeseburger for the first time in months. Not one to take advantage of feeling great, I plan to keep eating healthier...but it is nice to know I can splurge a little once in a while.

I've put a new poll up that will last until the end of the month. I'm kind of curious to find out who my readers are and where they are with their treatment. I'm doing this to make sure I'm covering material for all of my readers and not just a portion of them.

I have a few all chemical readers who must be bored to death of my constant "take vitamins" bit. If I find chemical fibro fighters are gaining in numbers here, I'll do my best to add more chemical content.

My goal is to keep everyone as informed as possible while touting the natural treatments for those of us unable or unwilling to go chemical BUT it is also just as important to make those who have no choice but to take prescription meds daily, comfortable with the conversations that go on here.

Besides, if they offered a "get rid of Fibro" pill tomorrow...I'd throw my back out jumping at them. haha!

So help me out, let me know what natural percentage you are. And for the record I'm 90%. When my headaches come around, there's not much I wouldn't do to make them go away!

I missed you all. Hope to see and hear from you soon.
As always, have a 98% day!
Gin

2009-03-13T16:08:00.000-04:00

The poll results for the anti-depressant questionnaire were rather interesting. The majority of people who took them felt they helped their symptoms a little but left other symptoms untouched. Most of the symptoms that were missed were pain related and most who found the A-D meds to be a little helpful wouldn't want to take another one.

Sometimes the side-effects outweigh the benefits but not to everyone. And although there are many of us who had bad reactions to A-Ds and never want to try another again, I would caution everyone not to discount the advancements in medicine every year.

I know that sounds a little weird coming from me. Haha. But keep in mind, I don't plan to be the Guinea pig. Ya'll can go first and if it works for you... ::winks::

Thanks to everyone who participated in this poll. I will be putting up another one either today or within the next few days.

I'm a bit bogged down at the moment, I apologize for the erratic postings. For the next few days I'll be a smidgen busy so you may not see me. Depends on if I have internet access.

Hope everyone is having a 98% day!
All my best,
Gin

Tender? Trigger? What's The Point?

2009-03-11T12:28:00.000-04:00

I've been asked about the difference between tender points (A Fibro Thing) and trigger points (A Myofascial Thing).

I'm still doing some research on myofascial pain syndrome, which by the way 95% seem to have in addition to the tender points of Fibro. I'll give you the difference here today and a book I recommend to help take away some of the pain by self massage. It really is helpful.

Taken from The Trigger Point Therapy Workbook by Clair and Amber Davies:

"Myofascial pain is usually localized and its cause is very specific in the form of trigger points, whose extreme tenderness always reveals their location."

"Tender points are typically present almost everywhere and aren't limited to muscles. Fibromyalgia is believed to have a systemic cause, instead of something specific to the muscles, and the entire body is usually involved.

Muscles with trigger points feel firm; muscles of the fibromyalgia sufferer are soft and doughy. Muscles with trigger points stiffen the joints and inhibit your range of motion. In Fibromyalgia, the joints are loose or even hypermobile, although the person may have an overall subjective sense of stiffness and may be hesitant to move because of ongoing pain."

That's the easiest description I've read in my research so I thought I would share in hopes it will help with some of you.

The therapy book works on trigger points but sometimes can hurt more than hinder, at least for me. However, if I stay away from the tender points while massaging my trigger points, I actually feel a lot better. I use this for the arch of my foot and so far so good.

Just a suggestion for those of you who feel a lot of muscle pain. There are ways for you to massage yourself and save a couple bucks and who doesn't love saving money??

All my best,
Gin

Trigger Happy

2009-03-10T02:02:00.000-04:00

(There are a lot of aspects of friends and relationships to cover but today I'm going to stick with friends and short tempers and bad advice.)

A while ago, I talked with a friend of mine about the subject of befriending a Fibro Sufferer (or Fibromite as I've seen us called lately. Makes me giggle.) and what it means exactly.

She, being relatively healthy, and me being in a Fibro remission state but technically "unhealthy", it was a good conversation where no one threw a single punch! It was awesome. It was also good for the soul.

I joke about not throwing a punch because if there is one thing I've noticed about Fibro Patients is that we are notoriously trigger happy. And by that I mean that we snap at the silliest and most innocent comments that someone makes about us or our condition.

Now, as a Fibro Patient who has had to carefully reel in her anger tendencies, I'm well aware of just how many times in a day I am close to biting someone's arm off and beating them with it. I'll be honest with you my friends, I have gone after many a man or woman who did not deserve my violent attentions and in hindsight I realize that its very possible my fibro might have played a role in getting me past the boiling point and jumping in the fire.

Even now, as much as I would love to pretend I'm above such things, there are day where I have to take long showers and walks outside...and the gods help anyone I meet on the street that looks at me funny.

I'm not the only one like this. I've seen it for many years. Not all of us, but a good portion of us are a bunch of short-fused bombs.

Throw in a little bit of bad advice? And friends who were at one time close with us...can sadly be lost.

That isn't to say we're wrong every time we get mad. If someone who knows better than to suggest to us to take a couple of advil or rub Icy Hot on our legs and back, still suggests it in a manner that is insulting by all means punch 'em! (Just kidding!) Actually, those who mock your pain are not friends. Those who tell you every day that you need a few pills and you'll be right as rain every time you try to talk to them about how you're feeling?? They need to step down the ladder from friend to someone you talk to when you run into them and nothing more.

However, it is important that while we're talking about bad advice that we keep something in mind. We're hot heads. We sometimes don't realize we expect everyone to just shut up and listen to our list of aches and pains and how horrible things are for us today...this week...this month...this year. This is a slight exaggeration on my part...but can be how our friends view us.

But be careful. The need to constantly bend the ears of our friends may make them just as quick to snap over all the negativity as we are when they tell us we should take some aspirin and get a massage.

Sometimes our friends really are trying to help. For example: As mine said to me months ago... "Maybe you should try some advil."

My response?

"Advil? You're kidding right? Yeah.. I'll get right on that, and while the overdosing of advil chews away at my stomach and makes me run to the bathroom every time I eat something heavier than broth, I can think about how glad I am that I took something that can't possibly do anything for me and is keeping me from taking a legitimate pill because I broke the first "newb" rule of treating Fibro which is don't take advice about pain from someone who doesn't know pain!"

Okay that isn't verbatim but I hit all the "high" points of my rant. Needless to say the silence that followed made me wanna swallow my tongue. Hence the conversation about what is helpful and what isn't.

My friend told me this: "I know I don't know what you're going through, and I have no idea how to help you but to sit here and just nod my head makes me feel weak. You tell me you're in pain and how can I just say nothing? It's like when your spouse stands up from the dinner table and to use the bathroom and you ask them 'where you going?'. It's a stupid question but you say it anyway. I'm sick of feeling helpless when you sound like you're giving up or having a bad day. I have to say something!"

So, here I am, the Queen B*tch, sitting on my throne sucking on lemons.

When did I get so bitter? It was another deciding factor in my effort to get positive and keep my life moving forward into the light instead of the darkness of depression.

We had a better understanding of each other and now *I* have a few guidelines I use for friends I have or will make:

-I always make sure everyone I meet knows that I have Fibromyalgia. Some people look at me weird for "sharing" intimate knowledge but it's all in how you do it. "I'm sorry, I have a condition that makes me a little foggy sometimes. You may have to remind me of your name once or twice." Simple, without making the other person uncomfortable by saying "I have fibromyalgia, I hurt all the time so standing here talking to you is taxing and I probably won't remember your name either." LOL.. It took me a bit of practice to be diplomatic and not blunt.

-I promise not to break engagements over every little bit of pain I experience but when I'm really hurting...all plans are broken without attitude!

-I don't complain about pain in front of my friends unless I can't move or need assistance. It's okay to unleash but the more we do the more helpless our friends feel. Some friends don't mind... complain away but remember...some friends will also say they don't mind if you rant to them but over months or years start to distance themselves. As my sister constantly reminds me about one of her friends "He's never happy when I talk to him. I want to be there for him but its too much. I get depressed just talking to him anymore." Make sure this isn't you.

-I make a huge effort not to take advantage of anyone who listens well and I refuse to get into a pain debate (point counter-point style). You know the type. You say you're in pain and they have an answer for how you can fix it, you mention you have a headache too and they talk about how massages in the neck are "scientifically proven" to make a difference.. etc. Don't do it! lol.. It'll bring out the beast!

-I make sure that I ask how all of my friends are doing and what they are up to. When in pain and depressed it is really hard to remember that your friends might have something going on in their life too that they won't mention to you. They might feel as if it is inconsequential compared to your pain or that you'll view it that way and they'll stop thinking of you as a friend that they can turn to.

Again these are MY personal guidelines and everyone needs to make their own. Find out where your short-comings might be and save yourself from losing a few friends by making changes or amends. Know the difference between condescending jerks, a frustrated "feeling helpless" friend.

And most of all...easy on the trigger!! This goes double for me. :)
My best wishes for 98% days,
Gin

Meet Amy Marino

2009-03-07T14:12:00.000-05:00

Throughout my blogging I will be introducing a few Fibro Patients. They have answered a questionnaire for me and have been kind enough to allow me to post it to the blog.

What's the purpose of this?

Some of the stories will inspire you, some will sound all too familiar and in that familiarity we can see where we hit the walls that keep us from pushing ourselves. The more we encourage and support each other the greater the chance we can rise above what hurts us.

The interviews range from positive fibro fighters to those who just plug away every day trying to survive the pain who truly want to better themselves but need a little more inspiration. In all cases, each patient is deserving of our respect and understanding and I humbly thank those who have shared their stories with me.

Now I'd like to introduce Ms. Amy Marino.

Gin: When do you believe you first had Fibromyalgia and why?

Amy Marino: I believe I started showing signs in 2003 or 2004, when I was diagnosed with EBV. But I didn't know what to think, since I led a very busy life at the time.

Gin: What steps did you have to go through in order to be diagnosed?

A.M.: I was persistent, and was at the doctor often, getting a lot of tests done.

Gin: Do you have any secondary conditions?

A.M.: I am asthmatic, and I do have the CFIDS.

Gin: What medications are you currently taking and why?

A.M.: Lexapro, for the anxiety that comes with this condition, Flexeril to help with pain and sleep, and Seroquel, to help with the sleep.

Gin: Side Effects?

A.M.: One of the side effects I get is increased appetite. Also, drowsiness occurs, which honestly, I don't mind, but I don't like the dizziness.

Gin: Dramatic results?

A.M.: No dramatic results. I do have energy to do things, but when I crash, it's a hard crash.

Gin: What vitamins are you taking? Supplements? Homeopathic remedies?

A.M.: None. (Gin Note: GASP. Let’s get some Vitamins in you!)

Gin: What impact did your diagnosis have on your life?

A.M.: I finally know that there is something wrong with me. (Gin Note: Great answer. Because now that you know, you have something to fight!)

Gin: Has Fibromyalgia forced unwanted lifestyle changes?

A.M.: I am unable to stay up late, and I am forced to use caffeine if I need to function for a long period, like at work.

Gin: Has Fibro caused marital or familial strife?

A.M.: I do have a friend who doubts me having it. It's made flareups hell, and I am scared to talk about it when he is around. And me and my fiance are not able to have as much fun as we'd like to.

Gin: What are you doing for yourself to aid your condition?

A.M.: I have a routine, and I stick to it as much as I can, and I try not to make unnecessary changes to it.

Gin: Do you find yourself making excuses for your lack of ambition?

A.M.: Yes. I will always say that I can't handle it when people ask why I don't go to school. But right now, I feel I am not really making excuses, it's the truth.

Gin: Do you truly feel in your heart you’re doing all that you can to promote your own personal health?

A.M.: Not enough. I don't exercise as much as I want or should, but I am always too tired. And my diet is not the greatest. I don't know how to take it easy.

Gin: What steps are you taking to push yourself?

A.M.: I don't push myself, but I try to do the best I can.

Gin: Is there something you wish to try but you’re unsure of the legitimacy?

A.M.: I feel I am taking on all I can right now.

Gin: What are your future health plans?

A.M.: To try and have a better overall health.

Gin: What inspires you into motivation?

A.M.: The fact that I am engaged and I want to get married and stop putting him through my crappy life.

Gin: Thank you so much Amy, for sharing your story with us.

Overview: (What I feel we can learn from the interview. Feel free to add a comment as to what you learned as well.)

Amy's interview as a perfect first interview because she was succinct and honest. She didn't tell me that she was doing all she could for herself, just that she was doing what she felt she could handle. There is a safety net there for her, a comfort zone, and we all have it. Myself included. However, in order to fight fibro to the fullest we have to slide out of that comfort zone often and push, push! It comes in time and with motivation, which starting a new life as a wife can do for Amy.

Amy's story is inspirational because written out you can see where her fight is just starting and there are ways to improve it. She has energy, which we all know is a huge step in fibro, and if she starts taking some vitamins, she can only improve. B-12, Vitamin D, Magnesium... Give them a shot Amy!

The only disturbing element to this interview that I found, was the fear of talking about her condition near a skeptic friend. This is all too common, and it drives me crazy. Don't let one person who will attack you on every point, make you turtle your emotions and hide your condition. My suggestion is to get a pamphlet on Fibromyalgia, tuck it in your purse, and the moment he/she comes at you with their parroted misinformation you slap that pamphlet against their chest and say "get educated before you come up against me".

Don't let anyone! make you feel you're an "attention seeker" or that Fibromyalgia is all in your head. Sometimes we have to tone down our open complaints, because lets face it, people hate a repetitive sob story if it isn't theirs. But that doesn't mean we have to hide what we have. Your Fibro is real, and so is your determination to fight it! Good luck!

Again I'd like to thank Amy for sharing with me, and now with us.
Take Care my friends,
All my best wishes,
Gin

Know Thyself.

2009-03-05T14:58:00.000-05:00

One of the biggest problems we, as Fibro Patients, have is our lacking in knowledge of ourselves and often our condition. Okay so our condition isn't even known to the medical community really, so granted we're at a severe disadvantage. But there is a lot we can do without the scientific knowledge.

We have to work on instinct and personal observation. If no one else is equipped to help us we MUST help ourselves.

For the energy quiz, the tally was as follows---Well it doesn't matter because we all had it wrong! Myself included. Haha! I was disturbed, however, by the 17% that said they never pay attention to the circumstances of their energy.

Because of Fibro, we have to know everything about our body. We're all different. We all experience different symptoms at different stages. We can't just read blogs and message boards and support groups to relate to others so that we feel secure in a symptom. (Although that's a HUGE plus.)

We have to know ourselves. Every symptom, every day, should be documented. At least every day that you experience new or rare symptoms. We have to try to find a pattern within ourselves so that we can sense when we're lacking or when we need the most help.

It's really...really hard to do and to maintain. A pain journal or symptom journal or food journal...etc. But it can be done. And in that journal you need to realize what is sapping your energy the most.

Write down the routine for your morning and rate your energy as it slips and as it rises. See what helps you and what hinders you and make even slight adjustments.

I used to wake up okay.. and try to squeeze everything I needed to do for the day before I ate because I knew that once I ate...the digestion process would slow me down to a crawl. There were times when my first meal was at 6-7 p.m.

That habit made it to where I was squeezing in three meals in one or worse, staying up until 5 a.m. Thus my horrid circle went for 20 years...and it's not much different right now. However... I changed a bit.

I started eating such small "meals" that my digestion didn't sap me. I just ate more of them. My energy increased. I also added some D-Ribose and some Acai Berry powder...took some probiotics to help regulate my bowel and of course.. take vitamins daily. Especially B-12. It's the boost we all need. Make sure you're taking it!

Energy is the most important part of Fibro, because without it we lay around a lot. Our muscles get worse without exercise, our pain creeps up because of lack of movement and depression and the vicious cycle continues over and over.

Power naps are also a very helpful way of re energizing. Don't fight your body, make peace with it by compromising when you can. 45 minute naps that you make yourself rise from!

It takes very little to sap our energy so we have to actively fight to keep it. It is why you will often hear me snarl when I hear of Lyrica. Not because I think it doesn't work at all. People swear it helps them even though it doesn't cure them and whatever helps...I wouldn't begrudge anyone. HOWEVER, it also promotes weight gain. When we weigh more we're less likely to move around as much as we need to, to produce energy. Weight gain also means... more depression, which of course Lyrica helps to disguise until one day, you wake up and catch a glimpse in the mirror or hear a snide "fat" comment from some wench behind a Rite Aid counter!! (lol... okay bitter memories now.)

You have no idea how many women I hear who are crushed by the drug. ("I weigh so much now. I can't exercise and I can't get any energy from the added weight to get up and exercise. Help!") It makes me so angry! I've suggested topamax instead of Lyrica sometimes but it's hard for me to do that since Topamax and I did not get along. It does, however, make you lose weight and can help with migraine headaches. (Topamax is a sister med to Lyrica that makes you lose on average 30-40 lbs) Others swear by diets I like to call the "diarrhea diets" because really...you lose weight by giving yourself IBS. (Cabbage soup diet... Acai Berry mixed with a colon cleanse. etc)

Bottom line for me is this...we make energy in the bowel, therefore, the bowel must be healthy and producing the energy we need. Change comfort foods that you know are bad to mostly healthy. I say mostly because cutting out everything can lead to horrible junk food cravings that have you snapping off and purging. One step at a time is all we can do.

Summary:

Make a symptom journal. Know when and where your body suffers so you can counter-attack. Perhaps even preemptively.

Make an energy journal. Notice what times of the day your energy is lacking. Time your B-12 ingestion around that.

Give a little...take a lot. Power naps can help. You might feel like crap right after, but once you get moving you'll notice a little perk. We live for those little perks. Take advantage.

Take care of your bowel. It is the energy maker. Treat it well and it will do more for you. During bad bouts of IBS this is a bit more of a challenge but push through it. Find what binds! lol

Plenty of good rest, exercise, healthy digestion, Vitamin B-12 or B complex, D-Ribose, Acai berry (used carefully)...these things have worked for me. Let me know if you have found something else that has worked for you!

And as always,
Keep fighting the good fight,
All my best,
Gin

Chest Pain Panic!

2009-03-03T14:16:00.000-05:00

I was going to talk about energy today but I've noticed on a few sites the topic of conversation has seemed to be chest pains. And considering I received an email question about it as well, I figured I'd put energy off a day in lieu of chest pains. Which is, by far, a more scarier subject.

I'm 34 years old. My family history with heart attacks is obnoxious. My mother, who is 55, is the last remaining member of her family. It's weird. Growing up, most of the kids I knew in school never had a family member pass away...or if they did, they had a grand parent go. Throughout my school years and into adulthood, I was surrounded by death. I thought it was "normal" to have a funeral home on speed dial and they used to give us family discounts.

Uncle Art was first, Aunt Betty, then my Uncle Butch (45 years old), my uncle Wilbert, my grandmother, my grandfather, and lastly my Uncle Bob. All heart attack deaths.

So when I started to feel chest pains. I FREAKED!! lol. We all do it. Whenever we get any pain it seems our first reaction is always the worst. I'm infamous with this. My sternum hurt...I was sure I was going to be told I had lung cancer. My foot hurt, I waited for my foot doctor to tell me he needed to amputate.

It reminds me of the movie My Girl, where the daughter of a mortician always thought she had the condition her father's newest client had died from.

As Fibro Patients we expect the worse because, as I always used to say to Dan, "No one can feel this much pain and not be dying".

Oh yeah...The Old Gin was not a very positive person. Haha!

So what about all this chest pain? What the hell is it? And how can I tell the difference between heart attacks and benign chest pain?

In my case it is reoccurring costochondritis. Yippy! And the best way to tell that its my costo and not a heart attack is by moving for me. If I can feel the sharp pain by moving, make it worsen, then its not a heart attack. A true heart attack can not be aggravated. It is what it is!

I was searching for information about different conditions chest pain could be and found a very simple and detailed article on the Queens University website:

http://meds.queensu.ca/capre/chestpains/reading.html

Check it out, give it a read and then research the conditions. Because Costocondritis is my specialty (yay me!) I'll give you a quick overview of the symptoms:

Heart attack symptoms such as pain in the chest, sensitivity/pain in sternum (A tender point for fibro patients anyway...weee), difficulty breathing.

Difficulty breathing is a tricky one because it is not a good symptom to diagnose Costochondritis. If there is no pain, the difficulty breathing is more likely a "fibro thing" or perhaps a bad allergic reaction or possibly asthma related. Costochondritis is all about the pain, baby! Fun fun.

Now here's where I'm uncertain of things and I'll report back once I know more about it. My costo comes and goes. Sometimes within hours so I don't treat it just like I don't seek treatment for the ache in the arch of my foot. I used to get cortisone shots in my foot but it did...nothing. I still got the ache every day...because of Fibro.

So...here's my thought. Do I really have Costochondritis or does Fibro just mimic this syndrome as well? Is my ribcage really inflamed or does it just feel that way? Hopefully I'll have that answer soon.

When in doubt, my friends... go to the hospital. Chest pains are nothing to fool around with!

All my best,
Gin

Upcoming In March!

2009-03-02T01:18:00.000-05:00

It's an exciting and busy time for me, so I've stopped posting on some of my favorite loops and sites while I get cracking on things I have to do! But that doesn't stop the fight for me. I'll continue here and through email while going through edits and other fun publishing stuff!

So here's what you can expect from the blog in March.

I'm going to discuss energy and the lack-thereof and search for new ways to keep our body and mind going.

I've got a new poll on medication I'm going to put up.

I'm going to post some interviews with Fibro Sufferers/Plus Sufferers about their Fibro in hopes of finding common links and bringing awareness. (If interested in being interview send a brief summary of how long you've had Fibro and how you were diagnosed to Fibrohelper@gmail.com)

I'm going to put a special focus on spouses and significant others! Perhaps do spouse interviews and family and friends. We'll see how the first interviews go and the interest, if any, it generates.

This month I will be setting up another blog for the Fibro websites I've been asked to review. Outing the Scams Touting the Good.

These among other great things are coming. I don't want to tell all until I can confirm but TheFibroFight is coming along so well.

I appreciate all of you who follow the blog and support me in my endeavor to fight off more Fibro Flare-Ups!

As always, we can do this together!
My best,
Gin

The Negatives About Being Positive.

2009-03-01T04:53:00.000-05:00

I was talking with a friend of mine not long ago about Fibro. She and I both have it and she and I both absolutely hated the negativity surrounding the syndrome whether it was from the medical community and society or from Fibro Sufferers themselves.

We dreamed of a perfect world where Doctors and families understood our pain and where Fibro Sufferers fought against the Syndrome with all they had, helping credibility and raise awareness for this very real and agonizing condition.

We were both tired of going to the same groups, blogs, websites where everything was bleak. Stories were shared and relating was had. It was nice to see, but more often than not, it became darker...gloomier. Pain stories and laments about life sucking so much was all we saw on some threads and email loops! It was...depressing.

I bet someone could do a study out there about support groups, whether they help or hurt and the results would be shocking.

So how to turn that around?

Shoot a bit of positive in the mix and see what happens.

Well I can tell you what happens. Rejection mostly. LOL Oh I'm not saying I'm going to stop being positive. It's not in my nature. I'm not even going to complain about the personal attacks or the hate emails.

I've been told I'm preachy, insensitive, a bitch, and accusations have been made as to whether or not I suffer from Fibro at all. I try to deflect these images of me as best I can but the truth is, you can't force people to want to find good in their life when they're determined to feel bad. In fact, when you DO try, and sometimes I admit I try too hard, you become the object of hate and ridicule. Enemy Number One.

Reminding people that there is good out there and they can feel it is an awesome job, but not so awesome when you see the frustration and anger you can bring out in people.

Maybe I'm hated because they really are trying and they can't get to the 98% place yet. They don't believe it's ever coming and for me to continue to say it is possible angers them on the days they're at 2%.

That's how I choose to look at it. Anger and frustration. And boy do I understand that. I wouldn't like me either on those days! It's like the cheerleaders trying to get you interested in a game when you're down 50 pts with two minutes left. Its just not happening.

I get it. But just like the cheerleaders, I'm not going to give up.

I have to be positive because I know good health and good days are possible. I feel confident that in the future we'll only have more understanding and awareness.. and more treatments! I have faith.

I don't want anyone to feel as though their life is over and they can't find anything worth living for. Gods I will argue with anyone, piss off the world if I can just convince one person with Fibro not to give up.

I'm not saying this to martyr myself or to be preachy dammit. It is just how I feel. So many people, my friends...they all are just...teetering, looking for something to make them whole again. And until you hear the cries of many you just can't know the kind of pressure being positive can bring and why I can NEVER waiver on it or let others shut me down.

I will be here. I will be annoyingly positive... and I care deeply about you all.

All my best,
Gin

I Want My Life Back!

2009-02-28T03:19:00.001-05:00

It's disheartening how often I hear those words. "I want my life back!" I've covered my views often on this blog and on loops and groups I'm in. There isn't a 100%. But 98% is obtainable.

I've talked on and on about vitamins and eating better and exercising and while I'm positive those things help, the first move is far more complex.

It comes down to belief.

Whether you want to call it mind-over-matter, spiritual confidence, or divine inspiration, one thing is for certain. We have to convince ourselves we can get better.

In a lot of different studies and tests you see the medicine pitted against placebo and some of the results are quite close. That tells us quite a bit about the human race. We can "talk" ourselves into anything.

I'm not suggesting we can cure ourselves by hypnotizing our minds into believing our bodies are healthy. They're not. We know this because we can feel it.

But I don't believe we're at a disadvantage knowing what we know. Instead of worrying over what every little pain is. We know! It's Fibro and its here to stay. So wince with the pain but keep on walking! Don't let it stress you. This isn't something you haven't felt. This too will pass! That knowledge...gives us power! Just like when we first found out about our Fibro.

At first, a lot of Fibromyalgia patients are relieved to know they actually *have* something and they're not crazy. But that feeling usually melts into the pool of self pity once the knowledge that there is no cure overwhelms us. Depression follows and we start noticing more symptoms, more pain, more fatigue.

Fibro is dictated by stress and (I know we all don't want to hear it...) laziness. The more we let the diagnosis get us down and the more we lay in bed to nurse every little pain...the worse it gets. It stops being "little pain" and graduates to big daddy pain. Once it gets to that stage our body gives up and our mind follows shortly.

We have to get out of that rut! We have to make ourselves work every day! Nonstop! Towards the goal of decent health so that we can TAKE our life back.

Some of us are so far down the thought of even rolling out of bed and lifting a leg in attempt to exercise seems ludicrous. It isn't my friends.

I'm a perfect example of what can happen when you get ANGRY and you push Fibro back!

I went from 110 lbs to 160 lbs. I laid in bed every day. Barely did a thing. I moved from my bedroom to a chair in my living room and sat there and played games to get my mind off of the pain. I felt sorry for myself. Used narcotics often enough to have black spots in my memory. I took so many meds I had to go to the hospital every time I got a migraine because nothing helped any more. I gave up!

I told you the story of my daughter, and that incident coupled with a failed marriage and a will to overcome and live my life again inspired me to start the fight.

It didn't happen right away. It happened for a week.. and then I crashed... and then I tried again and that lasted two weeks. Etc. Finally, I realized its like kicking a drug habit. Shaking off the Fibro Life to get back to a normal one is possible, if we don't stop forcing it. What do we have to lose? What's the worse that can happen by pushing ourselves to the brink?

We'll hurt ourselves? That's possible, (probable considering the exercise) but we're already hurting just doing nothing. YOU decide when you hurt and why. You can get better control on your condition, all you need to do is believe it and make it happen.

I have faith in you,
Gin

**Disclaimers on all typos. lol

Fibro and Sinus Issues

2009-02-26T17:18:00.000-05:00

Post Nasal Drip is a common symptom of Fibromyalgia, but why?

Fibro increases allergies and the reactions we have to mold and yeast. Yippy!

So what is the function of our sinuses and why do they make us drip out our nose or down our throat constantly? Well I did a bit of research. ( A few days worth!) I found out that no one seems to know what Sinuses actually *do*. How awesome is that? LOL

What I did find interesting is Sinusitis, a condition that can match Fibro for symptoms. I've heard it said by some doctors that Fibro is just a really bad sinus infection. .... uh huh. "A blocked sinus can cause major migraines, bad breath, and chronic fatigue." Well what about muscle aches and pains? "Chronic Fatigue can atrophy the body." .....uh huh.

I read the report of this guy and rolled my eyes through most of it. Of course in all fairness I only understood a tiny bit of what he was saying. Medical Jargon can smack me around sometimes... I usually print it out and seek out one of my doctors like a kid learning to read in kindergarden.

Okay, back to the point. I may think that these Sinus Theory doctors are wrong about most of what they say but there could be something to the Sinus Theory. So I checked it out and I'm bringing you some quotes from my findings.

About Sinus Function: (Taken from yourtotalhealth.ivillage.com)

The sinuses are hollow spaces located in the face and skull. They appear in pairs on either side of the face. Depending on the type, the sinuses vary in size from tiny to the size of a walnut. The four sets of sinuses are:

Frontal sinuses. Located in the forehead. There are two of these sinuses, one per side of the forehead. The frontal sinuses vary greatly from person to person in both size and shape.

Maxillary sinuses. Located in the cheeks between the teeth and the eyes. There are two of these sinuses, one in each cheek. These are the largest of the sinuses, and each can be roughly as large as a walnut.

Ethmoid sinuses. Located on each side of the nose between the eyes. There are between 6 and 12 of these sinuses on each side of the face. These sinuses are very small.

Sphenoid sinuses. Located deep behind the eyes, towards the middle of the skull. There are two of these sinuses, one per side. The size, shape and volume of these sinuses vary greatly from person to person.

The function of the sinuses is not entirely understood. (Yup...read that just about everywhere!)Most physicians agree that the sinuses are useful for reducing the weight of the skull while preserving bone strength and shape. The shape of the sinuses and nasal cavity also serve to add resonance to the voice. In addition, sinus cavities may help reduce the damage sustained during a head trauma by absorbing some of the impact.

Like the nasal cavity, the sinuses are lined with mucous membranes – moist layers of tissue that secrete mucus. This mucus helps remove foreign particles that enter the sinuses. The sinuses also have cilia, tiny hairs which push the mucus back into the nasal cavity through small openings (ostia). This drainage is not based on gravity, but rather the efforts of the cilia. From the nasal cavity, the mucus can be removed from the body through either the nose, throat or mouth.

The ostia are very small, and can easily become blocked, preventing the normal drainage of mucus from the sinuses. This often occurs due to the inflammation produced by a cold or allergy (an exaggerated reaction of the immune system to certain foreign invaders that it mistakes as a threat to the body), excessive mucus production or growths such as polyps (bulging growths that develop in the lining of mucous membranes). After the ostia are blocked, inflammation or an infection can occur in the sinuses. This condition is called sinusitis. The air trapped in the sinuses during this condition can cause painful facial pressure, headaches or toothaches.

Okay...so now we know why the Sinuses are naughty. What about Sinusitis?

Taken from WebMD

Who Gets Sinusitis?

About 37 million Americans suffer from at least one episode of sinusitis each year. People who have the following conditions have a higher risk of sinusitis:

Nasal mucous membrane swelling as from a common cold
Blockage of drainage ducts
Structure differences that narrow the drainage ducts

Conditions that result in an increased risk of infection such as immune deficiencies or taking medications that suppress the immune system.

In children, common environmental factors that contribute to sinusitis include allergies, illness from other children at day care or school, pacifiers, bottle drinking while lying on one's back, and smoke in the environment.

In adults, the contributing factors are most frequently infections and smoking.

What Are the Signs and Symptoms of Acute Sinusitis?

The primary symptoms of acute sinusitis include:

Facial pain/pressure
Nasal stuffiness
Nasal discharge
Loss of smell
Cough/congestion

Additional symptoms may include:

Fever
Bad breath
Fatigue
Dental pain

Acute sinusitis may be diagnosed when a person has two or more symptoms and/or the presence of thick, green or yellow nasal discharge.
What Are the Signs and Symptoms of Chronic Sinusitis?

People with chronic sinusitis may have the following symptoms for 8 weeks or more:

Facial congestion/fullness
A nasal obstruction/blockage
Pus in the nasal cavity
Fever
Nasal discharge/discolored postnasal drainage

Additional symptoms may include:

Headaches
Bad breath
Fatigue
Dental pain

Yikes, huh? I get pretty bad allergies so I'm checking more and more into this as a reason for "really bad days".

I had the bad breath bit but started to use a saline nose wash nightly before bed. After a week my breath was back to normal. If you have bad breath, however, this isn't necessarily indicative of sinus troubles, it could be something more along the lines of liver damage. Especially if you take too much ibuprofen or acetaminophen. Our livers are pretty regenerative though...so don't panic, just take NSAIDS and acetaminophen and aspirin out of your daily pill intake for a bit. (Consult your doctors first!)

Other than the saline nose wash I use, I've seen saline drops recommended as well as vaporized steam.

The first step of course is to get the diagnosis from your doctor...but a saline wash never hurt anyone.

Hope this helps! Be well my friends.

With A Grain Of Salt

2009-02-25T15:31:00.000-05:00

Hello friends!

I apologize for skipping out for a few days. I had a bit of a migraine and then a spot of good news! I feel it was an even trade. A book of mine is getting published! Hurray! Good things can happen with a lot of hard work.

Especially feeling Fibro Free!

Today's topic is touching on a subject I previously posted about titled The Dangers of Support Groups. I talked all about the negativity and the impact those pages can have on the positive Fibro Fighters.

Part of the reason for a lot of negativity is that many people who have Fibromyalgia have other conditions that make their Fibro more painful. I don't have statistics with me but I would say over half of Fibro Sufferers have a secondary condition. I refer to these Sufferers as Fibro Plus.

I am a Fibro Plus sufferer and because of this, I know how difficult it can be to keep your secondary conditions separate from "classic" Fibromyalgia. You hear us rattle off all the things that we have on appropriate threads but for the most part, when we answer a specific symptom question or talk about our pain levels and our mobility capabilities, you don't hear anything about those extra conditions we suffer from which might be causing these excessive cases.

Thus, the confusion begins.

When looking through this blog you will find a monster list of symptoms that are/can be Fibromyalgia related. But how many other conditions out there can have these symptoms? How many are linked to common, short-lived, illnesses. One of the Fibro symptoms listed is post nasal drip which I have. It's annoying! It's also a side effect of having allergies or the common cold.

These lists aren't made to freak out about but soothe. "Don't know why you're having post nasal drip all the time? Well according to the monster list, it *could* be Fibromyalgia." That's the way you have to think about it.

Now, back to my original point...

Fibro Plus Sufferers (those with more than just Fibro) will comment on a symptom thread, and will bring unnecessary panic to those who have basic Fibromyalgia. For Example.

Fibro Sufferer 1: "I have sharp pains in my breast, anyone have this?"

Fibro Plus Sufferer: "I have had pains in my breast for 15 years. My doctor finally found a swollen milk duct and then a lump beneath that. The biopsy showed that it could be cancerous so I had surgery and am hoping I will recover well."

Yikes. The Fibro Sufferer just wanted to know about breast pain, which can be one of several Fibro symptoms. (Fibrocystic breasts, or even just extreme PMS which we can all suffer from. It is one of the reasons why magnesium is so important.) Instead of getting a "good" answer, Fibro Sufferer 1 got too much information. The Fibro Plus Sufferer just caused undo stress and gave an improper diagnosis because he/she was more intent upon sharing their own pain story than giving, what I call, TRUE FIBRO ADVICE.

Now, to clarify, there is nothing wrong with saying something like.. "The most common reason for breast pain for Fibro Sufferers is Fibrocystic breasts and extreme PMS, however mine was due to ."

It's all in how we word things.

I get really angry when I see people respond incorrectly because I remember when I first had Fibro and didn't understand much about it, I would read responses sent to me and freak out. "OMG I'm going to develop MS? Cancer? RA? I'm going to get so bad I'm going to be wheelchair bound?"

Then I realized after extensive research and study what I'm now telling you.

Most Fibromyalgia Sufferers (All sufferers from Classic to Plus)....have no idea what they're talking about. (Come on! We all have to swallow our pride and admit we are not 100% sure of anything except that we hurt!)

Fibro is so different for everyone! Also...Fibro Plus sufferers are NOT a good source of information unless they are able to differentiate their Fibro from their other conditions. (This applies to me too from time to time, though I do often refer to the common symptom list before responding to anyone with advice.) For example: When someone asks me about pelvic pain its hard for me to respond accurately because I suffer from IBS.

Please, my friends, remain positive and take the advice you hear with a grain of salt! Even that which comes from my mouth. The only thing I want any of my readers to believe is that anything is possible, including feeling fantastic!

All my best and hopes for health!

The Targets On Our Backs

2009-02-21T15:30:00.000-05:00

In the wild, whenever there is an injured animal, the predator sweeps in on the prey.

In the ill-health community it is no different.

It doesn't matter what you are afflicted with, chances are, there is someone out there who will swear they can cure you or cure you faster than what is sanctioned by the medical professionals.

Now, to be fair, not every supplement company out there can afford to pay the FDA the millions upon millions of dollars that are needed to run tests or studies that would validate their vitamin or their "cure". But as patients we have to ask ourselves why that is.

If something has been out there for a while, and still hasn't received the funding...well you have to use your best judgement. For me, I think of a vitamin that claims to help the heart, immune system, or whatever the claim is and I see the little Astrix that says "claim not FDA approved" and it doesn't bother me.

Vitamins are helpful, we all know that and so do the doctors. They tell us to take them so why would anyone need to spend millions of dollars to validate them? It would be nice though wouldn't it? We could all feel secure that we're not crazy. That vitamins really do what they say they do.

But it isn't vitamins that bothers me so much as supplement, holistic, homeopathic, and straight out bizarre cures. These are the ones that are targeted towards the sick in hopes of selling a product that 90% of the time doesn't do all that it says it will do.

Try everything you want to. I don't care if I don't agree with it or not. If you try it and it works that is awesome. But if you're like nearly everyone these days, you don't have the money to throw away at scams.

Here's a few tips that I've applied throughout the years to help guide me around the greedy freaks after my money. Hopefully it will help you keep some of yours.

- A Website, does not a legitimate business make. Any yahoo these days can put up a website, bottle some Oak Bark and claim that it has healing powers complete with "Customer Reviews". Sometimes your google search will give you a website, a youtube "news" commercial, and "Personal Blogs" that all hail the product as the best thing that cured them all. Actors can be hired, blogs can be faked. Look for a reputable source always! If it pops up on your local news station that you trust, then fine. But if it's some news station you've never heard of popping up on youtube...don't trust it.

- Stick with a reputable well-known distributor. "Bob's Vitamin Center" might not be as reliable as Vitamin Shoppe or BodyBuilder.com etc. If you don't know where to find a good supplier, someone trustworthy, buy popular health magazines and scan articles (NOT ADS) and look for sites that are mentioned. (I've seen companies make their own magazines and title it something like "Better Medicine" and in it are a bunch or articles about the miracle cure for Fibro/CFS/ Lupus etc. Funny how it mentions one supplement throughout the whole magazine. Not only are you buying the Mag but you're buying their product! The jerks!)

- A "BBB" logo (Better Business Bureau) isn't a guarantee. A lawyer friend told me it only means means they haven't been sued yet or sued successfully or sued without settlement. Kinda freaked me out.

- Watch out for the random touter as well. In any kind of support group you'll find that people will join up and act as if they found the cure for themselves and are just doing their duty in telling you about this little known cure. You usually don't see them poke around more than once or twice and they always claim that their one cure works in every post. "Oh you have itchy bumps? I had that too and I'm telling you Fibromyascam took it all away. I had to be on it for a month but it was well worth the four bottles of it for 50.00/pc."

-Do an ingredient search. If someone is claiming their oak bark cures it all, then try to find scientific evidence to support that. If they are saying that it is their "secret, patent pending" ingredient that is the cure...wait for that "patent" to go through. We've all seen these commercials over the years that have come and gone. When I was growing up it was an ancient pearl cream. I can't remember exactly what it was supposed to do but considering it was around for a few years and then gone, I'm going to say it didn't work and had duped as many people as they could and ran out of clients. There was also that breast enhancing pill. Blousant or something. That one made me giggle.

I'd love to hear stories about anything you tried that turned out badly. Also...if you have a website that you're unsure of and would like an opinion on, send me an email at fibrohelper@gmail.com. If you have a fibro website that you love and want to see get the thumbs up, send that as well.

I'm not trying to just out the scam websites but reward the good as well.

Be safe, my friends!

Mourning The Life We Had. What?!

2009-02-19T16:35:00.000-05:00

Recently I heard a Fibro Patient describe her transition from one phase of her life to the next by saying her pre-fibro life was like high school. It was over and she had to let it go. This was a great analogy! Except...the wrong one to live by.

Sure, there are certain things we won't always be able to do. Maybe we had a life where we taught people how to jump out of planes. Okay, with Fibro, we might not be able to do that anymore. But we can still jump out of planes! I know a few teachers who are affected by the Fibro Fog and have had to quit teaching. Or a bartender who can't stand up long enough to get through a shift and is terrified she'll pocket the money without intending to because her brain doesn't quite work as well as it used to.

Yes, our life before fibro is a lot like high school and we do have to let it go. But that doesn't mean we're done.

Do you really want to be sitting around moping about what you lost? What you can't do? Or do you want to set a new goal? Maybe one that is more reasonable.

Okay we can't instruct people how to fly through the sky or conduct a class full of screaming children (the most of which these days are starved for attention and love to make trouble) nor can we stand on our feet all day listening to the music pound in the background as we do our best Tom Cruise in Cocktail impression and make crazy tips!

Bye bye high school.

Hello College!

We have to get creative now. What we had grown comfortable with is no longer ours to have but don't sit around and mourn. (Okay maybe a little bit. Have a good cry session over the college you paid for in a job you can no longer do. But use your smarts to move on!)

When my writing career was put on hold because I couldn't get my brain to work for me, I started looking for other things to do. I came up with several ideas. Then once I felt better I got back to my writing but I still work on those other ideas in case it gets bad again.

I thought about opening an online shop where other Fibro patients who crafted things at home, sewed clothes, made toys, made jewelry, etc could all come together and sell their wares while raising Fibro Awareness. I thought about Fibro Patients who didn't craft, coming along and helping others at flea markets, state faires... as well as other venues by writing up pamphlets, baking goods, managing the online stores.

I had this idea...but haven't acted on it yet because I've been busy with my writing but I haven't given up on it. Myself and other Fibro sufferers could really get this off the ground and make something out of it so we could travel, have fun, bring awareness about our condition, demand answers by being in the limelight.

You see, I don't look on my life as a constant distancing of myself from High School. For me... my new ideas and future goals and successes are on a little island in the sea of life and I'm going to swim my ass off towards them for all I am worth.

lol.. and now the song "Just Keep Swimming" from Finding Nemo will be stuck in my head all day!

Mourning the life I had? Well, sometimes I think of how nice it would have been if...

But that's as far as I allow myself to get. That "if" doesn't exist. I have what I have and I'm going to work through it and get to the other side to happy and successful.

If you're interested in my little idea by the way...let me know via email at FibroHelper@gmail.com. If we get enough people who can devout some time to it, it won't have to wait until I have a ton of time to devout solo to it.

As always, My Friends, be well...and find your new island.

Pain Meds vs. Treatment

2009-02-18T19:59:00.000-05:00

On a few of my loops and groups I've noticed a growing number of Fibro Patients that talk a lot about the pain meds they take. Despite my reservations about acknowledging the fact that they are needed, I'm here to testify that I know in many cases they are.

When I get a horrible headache regardless of the precautions I take and the vitamins I ingest and the stretches I do and the workouts I sweat for...every once and a while I'm going to get pain. And not just any pain...FIBRO PAIN. Gahhhh.

I've often talked about how well I've been doing and how I haven't needed anything chemical. (Which is good because most pain meds and other chemical products all make me have horrible reactions. Yippy.) But yes.. even I have five steps forward and one back.

Yesterday, I had the mother of all migraines. You know the type. Can't move, can barely breathe, throwing up from a side position. Weeee.. fun. The most hard core drug I can stomach these days is fioricet. It took the edge off after a night of hell.

But here's my point. Pain meds have their uses. When things get so bad we can't move...popping a pill is fine. No one should have to lay around in agony.

HOWEVER, I have seen an alarming rise in people who say they have tried everything and nothing has worked except narcotics. "What are you doing now?" I ask.

"Nothing," I was told. "My doctor and I have tried everything and now it's just percocet."

I refuse to believe that. I don't care if everything else has failed you should still be trying something! There is NO REASON to stop taking Vitamins because you believe they stopped working for you. Well.. your body needs them anyway so why stop? Why put yourself at a disadvantage by refusing to take them because they didn't make you feel awesome again?

Here's what I want to stress to you today my friends. Pain Medication is NOT a Fibromyalgia treatment. Anti-depressants, anti-inflammatories, vitamins and supplements, chiropractic care, physical therapy, and exercise....THOSE are Fibro treatments and I hope with all of the medical break-throughs every day that we'll be able to add to that list.

When the fibro treatments aren't enough or we have really bad days of pain (which happen to even the healthiest Fibro Patients) you can take something to take the edge off and get back to your treatments.

But if all you're looking for is a drug that will keep you high and happy until someone discovers a cure...well...you're going to miss half of your life. You're also going to lose a lot of respect and a lot of ground for those Fibro patients who are struggling every day to fight, not only the condition, but the stigma that surrounds it.

Keep your pain meds. You'll need them my friend, but do NOT use them as a tool to hide behind. Take control of your body and your condition. Fight it, don't mask it.

As always, be well friends!

IBS Tips

2009-02-16T16:27:00.000-05:00

A great many Fibro sufferers find they have IBS. It can also come and go just like Fibro flare-ups and be just as binding. (no pun intended)

If everything you eat makes you run to the lavatory, your social life is cut back to zero. No dinner, no movies, no driving long distances. Its very debilitating.

Now with that being said, like Fibro, it is manageable. I recommend the books by Heather Van Vorous. Eating for IBS and IBS the first year.

You'll learn more about your IBS and how to better manage it. Some people claim that they have gone off of all IBS pills and manage their IBS strictly through dieting. I think that's great! But it doesn't always work. Some of the finer points of Ms. Van Vorous' advice is usually skipped or taken too quickly.

So here's a few quick tips:

-Don't try to change your entire diet at once. An extreme diet change can have just as dire consequences as a poor diet. Start slow and introduce new things a little bit at a time.

- Keep a diary. Just because food says it is IBS "safe" doesn't mean it is. In Fibro, we develop reactions to things at the drop of a hat. Keep a daily diary about what you have eaten and whether you had an adverse reaction to it. You can rule out foods using the diary that have set your stomach into a frenzy. HOWEVER: It must be noted that some days IBS isn't about the food you eat or how fast you eat it. But instead...your nerves. So in the diary, keep track of your emotional state as well. Give foods a couple of chances.

-Eat slower. We're always in a rush aren't we? I remember sitting at the table at my cousins house and my peers were like "HURRY UP...we can't play until you're done. Eat faster." Now I can eat an entire plate of food in 15 minutes. It took me 40 minutes to eat my tuna melt yesterday and I was able to keep it in for normal digestion. Time to party.

-Eat Fiber. Ms. Van Vorous speaks about soluble and insoluble fiber. Things I never knew honestly. Fiber was fiber right? WRONG. lol. Boy do I feel uneducated. Get the books or do a little bit of online research to find out the list of differences. One thing I started to do was eat fiber cookies from Metamucil every morning with some peppermint tea. Which brings me to another quick tip taken from "Eating For IBS".

-Peppermint. It's a natural bowel soother. I had heard this before but needed it hammered into my head by Ms. Van Vorous. If you can't stand the taste of peppermint, try chamomile.

-Do Not be afraid to eat. Recently, someone in a group I belong to was so tired of nothing sitting well in her belly that she stopped eating. That's the worst thing you can do. Keep eating! Just eat softer, more easily digestible foods. If you're having a bad few days, take it down a notch or five. Broths, jello, clear liquids... then introduce rice and yogurt, then crackers and breads... etc. Give your stomach a break if you must but not too much.

-Take relaxing baths. I find that when I get really bad, I start worrying over what kind of life I'm going to have if I can't control my IBS! Part of the condition goes hand in hand with stress and worry. A cousin of mine had severe IBS because her husband was in Iraq, the poor thing. Now she gets it when she spends too much money. Which is almost funny if you knew her. Regardless...take a hot bath, remain positive. So today something didn't sit right with you. You'll fix it.

As with Fibro, so is IBS. Remain positive, fight for bathroom freedom! lol
We can do this and get back to the things that matter to us.
Be well my friends!

As Requested: The List

2009-02-14T16:34:00.000-05:00

This list is posted on about.com but has been meshed with a couple of other claims to Fibro to try to make it even more complete. I love that website as some of you know. It also has a GREAT Fibro community ,though sometimes there are a few depressing people there. The Board Guide does her job well, so its a pleasant support group for the most part. Check them out: http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-chronicfatig

Without further ado, for your convenience, here's the "Monster Fibro Symptom List".

General Fibromyalgia Symptoms

Delayed reactions to physical exertion or stressful events
Other family members with fibromyalgia
Sweats
Unexplained weight gain or loss
Cravings for carbohydrate and chocolate
Headaches/Migraines

Muscle & Tissue-Related Fibromyalgia Symptoms

Pain that ranges from mild to severe, and may move around the body
Morning stiffness
Muscle twitches
Diffuse swelling
Fibrocystic (lumpy, tender) breasts (as an overlapping condition)

Sinus & Allergy-Related Fibromyalgia Symptoms

Allergies
Post nasal drip
Runny nose
Sinusitis
Mold & yeast sensitivity
Shortness of breath
Earaches & itchy ears
Ringing ears (tinitis)
Thick secretions

Sleep-Related Fibromyalgia Symptoms

Light and/or broken sleep pattern with unrefreshing sleep
Fatigue
Sleep starts (falling sensations)
Twitchy muscles at night
Teeth grinding (bruxism)

Reproductive Fibromyalgia Symptoms

Menstrual problems
PMS (as an overlapping condition)
Loss of libido
Impotence

Abdominal & Digestive Fibromyalgia Symptoms

Bloating & nausea
Abdominal cramps
Pelvic pain
Irritable bowel syndrome (as an overlapping condition)
Urinary frequency

Cognitive (fibrofog) Fibromyalgia Symptoms

Difficulty speaking known words
Directional disorientation
Loss of ability to distinguish some shades of colors
Short-term memory impairment
Confusion
Trouble concentrating
Staring into space before brain "kicks in"
Inability to recognize familiar surroundings

Sensory Fibromyalgia Symptoms

Sensitivity to odors
Sensitivity to pressure changes, temperature & humidity
Sensitivity to light
Sensitivity to noise
Night driving difficulty
Sensory overload
Paresthesias in the upper limbs(tingling or burning sensations)

Emotional Fibromyalgia Symptoms

Panic attacks
Depression (as an overlapping condition)
Tendency to cry easily
Free-floating anxiety (not associated with situation or object)
Mood swings
Unaccountable irritability

Heart-Related Fibromyalgia Symptoms

Mitral valve prolapse (as an overlapping condition)
Rapid, fluttery, irregular heartbeat
Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)

Skin, Hair & Nail-Related Fibromyalgia Symptoms

Pronounced nail ridges
Nails that curve under
Mottled skin
Bruising or scaring easily
Hair loss (temporary)
Tissue overgrowth (non-cancerous tumors, ingrown hairs, heavy and splitting cuticles, adhesions)
Itchy skin

Miscellaneous Fibromyalgia Symptoms

Hemorrhoids
Nose bleeds

Sympathizing With The Incredible Hulk

2009-02-14T14:34:00.000-05:00

Happy Valentine's Day friends! Or should I say...Hallmark Holiday? I was never that into celebrating V-day although it does get me dinner once and a while.

Today is a good reminder that life goes on around us all the time and to be light-hearted whenever we can because the burden we carry is so heavy.

On a couple of my loops today I'm going to start strings on what inspires everyone to get happy when they really need it. Feel free to share your stories in comments to this article if you like. I love hearing from everyone.

One of the things I love to do when I'm feeling down is watch movies. It usually pumps me up but it can also make me have a good cry session that results in a "moment" for me. Those moments...though technical not a good moment, is essential so that I can have my positive times.

So in a sense, movies help me change my mood to best benefit me. Music also has that power, though TV, for me, is last on the totem pole. I like to read as well but that requires focus. My focus isn't always reliable. LOL TV for me is good because of the History Channel and Discovery. I'm a huge history fan and watching ancient civilizations discovered and explained is oddly soothing to me.

Get to the Incredible Hulk story already! I bet you're saying that.

It is impossible for me to go to bed before 2a.m. unless I'm wicked sick. So I watch movies that I've seen so much that they don't hold my interest so strongly that I stay awake. One of the most recent movies that I watch when I lay down to sleep is The Incredible Hulk. (The Ed Norton/most recent version)

I love it. And last night as I'm falling asleep I realized why.

Anyone with Fibro could have played that part perfectly. The movie starts out with a counter "Days since last incident". We can all relate to that. It can be us counting until our last flare-up or our last IBS episode etc.

Bruce Banner is trying to find a normal life, constantly researching in hope the a cure will come out of the haze of his life, which is no longer his own. Newp...he shares it with the Hulk.

I can't speak for everyone, but on my horrible days (Hulk days) I am not a good person to be around. I will snap someones head off their body if they say the wrong thing. And my the Universe help them if they say something insulting!

One part of the movie, Bruce is looking at himself in the mirror and that was when the profound revelation that I related to this character hit me. There was such sorrow in that moment. It was probably less than 30 seconds but for me it was the best part of the movie. It was as if he were trying to find himself in the reflection...what he had once been or maybe, looking for what he could be if he knew what to do.

There's a part where they're in the car and Betty is trying to console Bruce Banner by telling him that it's okay. That the Hulk is just and extension of who he is and she's sure that a part of him is still in there somewhere. And typically of Bruce (and Fibro patients) he snaps at her: "I don't want to control it I want to get rid of it!"

RAAAAARRRRRR! One thing we don't have that the Hulk does is the ability to bash peoples heads in with an automobile. Tell me that wouldn't be fun the next time you see one of those "Fibromyalgia patients are a bunch of fat lazy housewives in need of attention" posts.

Be well my friends!

What Inspires Me:
Movies: Apollo 13, 13th Warrior, The Incredible Hulk, Ghostbusters, Lost In Translation
Music: Evanessence, Breaking Benjamin, 30 seconds to Mars, movie soundtracks (Gladiator among others.)
TV: Anything on the History Channel and Discovery that covers historic people and places.
Books: Romance and Erotic novels.

Others: Sick children. Watching their strength gives me strength.
"! and ... " Two punctuations you will see me abuse on a regular basis.
My daughter and her laughter.
My traveling dreams and the promise of a happy relationship.
Improvisational writing...the muse of my creativity.
The planet Earth and all her elements.

Adding Soldiers To The War...Safely.

2009-02-13T15:37:00.000-05:00

As I sit here lining up my soldiers, (the myriad vitamins I take everyday) a few things occur to me. The first is that it is going to take me two swallows instead of one to get all of these down and the second is that Amino Acids really stink. Every time I open the bottle to fish out my two pills I'm hit with the glorious smell of petrified goat urine. At least that is what I imagine petrified goat urine to smell like.

Yes, my friends, I have added to my vitamin supplements again. I took 2 Amino Acid pills and a B-12 complex last night and I felt... fabulous! Except I took them before bed. The B-12 kept me up all night like usual when the hope was that the amino acids would help put me to sleep.

This is a classic case of me not paying attention. I get excited when I read up on a vitamin and decide to add it to my regimen and thereby dooming myself to premature pill-popping! What I discovered in my haste is obviously B-12 is best taken during the day! (Which if I were thinking straight I already knew since those little energy drinks are...you guessed it.. b-12 goodness.) I also discovered...B-12 pills and IBS don't mix. Unfortunately I fell off the food wagon last night and had a Subway melt which hasn't messed me up in the past but with IBS you never know what will mess you up and when. So it is possible it could have been that. But I'm thinking the B-12 is the culprit. I'm looking into a liquid form that not only has the B-12 but Folic Acid.

This seems like a good time to talk about the misuse of Vitamins. There are a few points I wanted to make quickly since I tout natural cures on this page.

Add a little at a time!! Fibro patients are known to suffer from IBS more often than not and it can come and go too. So start out slow. My suggestion is Magnesium and Vitamin D first. Then add a pill a week or every other week.

Remember that results aren't always quick. Sometimes our body is pretty deficient and it could take a few days or, as a few people have claimed to me, weeks. I started feeling better 4 days after I took Magnesium and Vitamin D. (I added five more vitamins that 5th day and ended up having to go back to just the 2 and introduce them slowly.)

Do the research! There are some vitamins that won't harm you with excessive doses. There are others that can be just as dangerous as Pharm Meds when taking more than you should. Always consult your doctor if you're concerned.

Ask your doctor about testing you for vitamin deficiencies. During research you'll read about a lot of vitamins you "need". It usually doesn't hurt to take them but if you don't want to pop more vitamins go to your GP and ask to be tested.

Keep a daily vitamin journal, or add vitamin intake to your existing journal.

I keep a food, pain, fatigue, and vitamin daily journal. Its tedious but when something goes wrong, I can usual track where I've screwed up. Or worse...when I haven't and its just a Fibro perk. (Yippy!)

I'll keep you posted as to how I feel getting the B-12 into my system. It's supposed to help with depression among other things but that is why I'm taking it. I feel good but sometimes still get pouty. I'd like to abolish that completely!

Take care everyone and as always, be careful.

The Dangers of Self Pity and Support Groups

2009-02-12T14:04:00.000-05:00

Far too often in many Fibromyalgia groups there is a common link that has nothing to do with the disorder itself. It's the common ground of self pity.

The majority of us wake up in the morning and the first thought on our mind is our health and lack of happiness because of it. We do a quick run-down of what hurts to move and the severity from 0-10. Then we spend the rest of our day trying to get through work or raising babies or even getting the gumption to get out of bed.

And that is simply the wrong attitude to have. It also happens to be what helps keep our flares up and our morale down.

I get a lot of friend requests and even IM and email compliments about my positive attitude and it shocks me how surprised most people are about my upbeat "go-get-em" fighting stance against Fibro.

I shouldn't be a rarity but the norm!

The problem with support groups is that they are usually filled with more than just questions about the condition. It is full of pain rants and ravings and desperate calls for help. It is always good to help out those who have a burning need to find out information or to be comforted by those that understand what they are going through. THE PROBLEM lies in the gift itself. Talking with those who have Fibro is a gift, make no mistake, but it can also be a curse.

For example... someone asks about their elbow tingling and if it happens to anyone else. Others answer that they do, its normal etc. But the majority of responders will add more. Their own tales of woe, or how they spoke to their doctor about the pain and he put them through a bunch of tests and nothing they do can get rid of the agony they now feel as the "tingling" developed.

Okay the responder was trying to make the questioner feel better but in fact, the response was so detailed that it ended up making the questioner afraid that her own tingling elbow was about to get worse and never go away, plaguing her for the rest of her life. Thus bringing up a new round of self pity with the horrible prospect of an unknown future. More stress, more sickness, more self pity or worse...hatred. "What's the point of getting out of bed? It will only hurt more and I'll get worse and feel worse and...and...." The vicious circle continues!

Let me just say...oi.

It happens all the time and spending too much time around Fibro patients can be a real downer. It was part of the reason I started this blog for people to go to ask questions and get one positive answer and I have promised to silence the negative nancies.

Fight back on your support groups. Don't let people start a negative chain. Call them on it. "I can't do anything, I feel so horrible I don't want to move today." Well then you're not trying.

Keep things in perspective. I donate to St. Jude's Children's Hospital. And if those kids can fight through their sickness to get enough energy to play for an hour we can get our butts out of bed and fight a NON-FATAL condition like Fibro.

We're all in pain. We all suffer. Our pains are alike but they don't have to evolve similarly. We each can take control of our Fibro by customizing our meds to fit our own beliefs and symptoms!

Don't let self pity and worry drag you into despondency and despair.

Fight! Fight every day! If today is a bad day, deal with it, do research, get yourself pumped up for the fight the next day and know that someone out there is determined to fight all the way to the top to find answers for us all. And I'm not just talking about me. There are others out there as determined as I. We'll get there. I have no doubt about it!

And while we fight for a cure in the future, we can get better now. We can feel better by taking control and I'm proof of that! Stay strong and positive my friends.

All my best,

What Works For Me.

2009-02-10T22:15:00.000-05:00

I often talk about what works for me on certain loops and I get a lot of emails and messages asking me to clarify or why I take specific supplements.

Honestly, it is one of the reasons I created this blog. I LOVE questions, but if I could stop answering the "what are you on and why" question, I could get back to the others that take a little longer to answer.

The Vitamins:

Vitamin D (About 2000 IUs but some other people take 5000 IUs. Ask your doctor.) For bone, joint, and immune system help.

Vitamin C (500mg time release) Immune health.

Magnesium (500 mg) Magnesium helps heart health, migraines, bone and muscle pain. This IS the Fibro natural drug my friends. Make sure you're taking it!

Multi-vitamin (I prefer a vegan multi but I also like Alive* Whole Food Energizer. Anything that gives us more energy is a plus!)

The Supplements: (Also vitamins? I'm a bit fuzzy on the difference if there is one. These things that I take are not the average vitamin so I'm putting them in a separate list.)

Omega 3-6-9 (2 softgels daily) It promotes heart health and circulation.

Probiotics (8 billion Acidophilus and Bifidus) For stomach regulation. I took a lot of antibiotics and my stomach went crazy! I now have IBS. Yippy.

D-Ribose (1 scoop a day) D-Ribose is expensive but it is touted to help with muscle pain and stiffness and help you sleep! What isn't to like? It is also said to give you energy.

Acai Berry (1.5 scoops of Sambazon powder.) When I had no energy I heard about Monavie. I couldn't afford it so I had to try other alternatives. I found Sambazon and had a smoothie a day with it. I had a burst of energy that enabled me to start regular exercise sessions. I take it 3 times a week now though, as I seem to have developed a good source of energy without building a dependency. Acai berry mixed with blueberries and raspberries gives a great source of anti-oxidants which many studies suggest a lowering in cancer risk. Wooo...sign me up!

Who Are You Gin?

2009-02-10T18:13:00.000-05:00

That's a pretty deep question, but instead of getting all Confucius with it, I'll answer simply. I am a mother. I am a writer. I am a woman who was diagnosed with Fibromyalgia. After that I became a whiner, a mourner, a victim, a stereotype, a cynic, a hater. I lost my old life, my old hopes, my old dreams, my husband, my pride, my self esteem.

I gave up.

And then I was rescued by someone small of stature but big on wisdom. Only she doesn't exactly know it.

My four year old daughter came into my room one morning and crawled into bed with me. She sighed and asked me if I was hurting. Of course I was, but I smiled and tried to tell her that mama was okay. You can't lie to the young ones, they never buy it. Dramatically, she tossed herself down next to me and groaned. "Me too," she said.

Her too? UGH! I had officially hit rock bottom. Nothing else that had happened to me up until that point had made me feel more like a loser: Not losing my marriage, not losing my best friend, not even hating myself and the constant wallow sessions in self pity. This new developement brought with it a whole new set of symptoms. I'm not talking about pain, although there was plenty, or fatique. I'm talking about guilt and its many facets. Guilt about my daughter imitating my pain and making me synonymous with it. Guilt about the kind of role model I was for her. Guilt over the realization that I had become a painful blob of self pity making excuses for my behavior by hiding behind my symptoms.

Well, no more!

I got up that day and exercised. I felt it for the next week but I kept going. I popped 3 advil every four hours for months. (A very bad idea, but it was all I had available at the time. My stomach now suffers.) I started researching everything I could, good and bad, and I tried everything I could, from hokey holistic to scientific treatments.

Some things worked, others didn't.

If we ever know anything about Fibromyalgia its that we don't know anything about Fibromyalgia. There are no 100% cures. There are no 100% days. But there can be 98% days! I'm living proof of that. And while I'm feeling these 98% days I'm going to use them to find out why I have Fibromyalgia, what I can do to beat it, and what we can do to prove it exists and get the treatment we need.

I plan to find out all about Fibro. Is it a syndrom? A condition? A behavioral problem?

The only thing I DO know about it, is that regardless of why it started, its with me now. Say what you will about the condition, it isn't going to hurt my feelings half as much as ignoring what I'm feeling will cause me pain.

Starting in March, I am going to put myself through doctors, and tests, and vitamin regiments to ever increase my "good days". To get rid of the symptoms that keep me homebound on bad days and I'm taking YOU with me.