Saturday, December 26, 2009
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.
Friday, November 27, 2009
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.
Monday, November 23, 2009
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,
Saturday, October 31, 2009
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.
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.
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!
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.
Saturday, October 24, 2009
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.
Saturday, October 3, 2009
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)
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.
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!
Thursday, October 1, 2009
I'm newly told I am Fibromyalgia. I'm thinking where to start can yuo help?"
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!
Thursday, September 24, 2009
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,
***Still to come:
-Men and Fibro (waiting on a few emails for this one)
-LDN (Low Dose Naltrexone.)
Sunday, September 6, 2009
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,
Sunday, August 16, 2009
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 firstname.lastname@example.org.
Sunday, July 19, 2009
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.
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.
Friday, July 10, 2009
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!
Sunday, July 5, 2009
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.
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,
Friday, July 3, 2009
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.
**disclaimer on all typos that are well within my control but outside of my ambition.
Wednesday, June 24, 2009
"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:
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.
Friday, June 12, 2009
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,
Wednesday, June 3, 2009
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."
"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!
Tell me what you think, My Friends
All my best wishes for 98% days!
Thursday, May 28, 2009
Can you tell me what you know about demnta and altsheimers linked with fibro?
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.
Tuesday, May 26, 2009
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!
Thursday, May 21, 2009
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.
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.
Friday, May 15, 2009
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!
Tuesday, May 12, 2009
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.
"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.
"...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.
All my best and hopes for world wide Fibro Awareness,