Tuesday, March 31, 2009

Fibro Vitamins Part 3!

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

Sunday, March 29, 2009

Busy Bee. My Apologies!

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

Wednesday, March 25, 2009

Fibro Vitamins Part 2

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

Monday, March 23, 2009

Fibro Vitamins

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

Saturday, March 21, 2009

If You're One Of My Facebook Readers...

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

Friday, March 20, 2009

Reviving "The Idea"

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::

Thursday, March 19, 2009

Know Thy Enemy

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

Wednesday, March 18, 2009

New Poll!

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

Friday, March 13, 2009

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

Wednesday, March 11, 2009

Tender? Trigger? What's The Point?

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

Tuesday, March 10, 2009

Trigger Happy

(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

Saturday, March 7, 2009

Meet Amy Marino

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

Thursday, March 5, 2009

Know Thyself.

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

Tuesday, March 3, 2009

Chest Pain Panic!

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

Monday, March 2, 2009

Upcoming In March!

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

Sunday, March 1, 2009

The Negatives About Being Positive.

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