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Fibromyalgia Fustrations

Fibromyalgia is what I would call one of those syndromes that is not really understood, even by doctors, there is no known cause and no real treatment for it.  It has numerous symptoms and it is like a house of cards... it is triggered in the brain and then the brain sends out the constant nerve signal of pain, pain, pain that just never ends, you get this constant fatigue, insomnia, what people call 'fibro' fog which is poor consentration and short term memory problems and then just numerous symptoms cascade down from there as various different systems of the body are affected by the overall nervous system fatigue.  It is definately the root of my unhealthy tree and it is the most likely cause to why my migraines are chronic and so unresponsive to treatment.  I have described in years past where I have had trouble walking for several months due to the sudden and inexplicable pain and weakness in the tendons and ligaments in my feet, or the crippling pain in my wrists for several months that is like carpal tunnel but wasn't but I needed braces for a that time and had difficulty with pretty much everything and couldn't put any pressure on my hands at all.  Or times when i couldn't walk more than ten minutes without being crippled by pain in my hips and knees that just got worse and worse until I could only do an agonizing slow shuffle movement.  Those are incidents over and above the normal everyday baseline all over the body baseline pain that fluctuates based on activity, position of the body, sleep and weather.  It is also a condition that defines Invisible Disability.  Because people don't understand what it is.  Doctors don't know how to treat it.   Workplaces are bias about it.  No one can see any of the symptoms and there as so damned many of them people think your just making them up until you just don't tell anyone you have the condition any more.

I lived with this symdrome for a long time without any treatment at all because as I said doctors don't much get it and back in the day there wasn't any treatment to offer... and they are not much into offer any alternative solutions.  So you have to figure out how to deal with it on your own.  And I pretty much did, except for the times when it would flare up, in which case you just deal with being temporarily crippled for several months.  Then Lyrica came out and I still was on no treatment because I wasn't being treated for fibro, it was just ignored.  But I was being treated for migraines, pretty aggressively at that point and my neuro tossed Lyrica in the mix as a preventative simply because it was a 2 for the price of 1.  It was an awesome medication for fibromyalgia.  Seriously awesome.  Baseline pain was reduced.  I could walk farther with less immediate pain and less pain afterwards... which meant I could actually do things like mild yoga with less immediate pain and fatigue and less lingering pain afterwards.  It also reduced the flare ups of those spontanous bouts of horrible muscle whatever it is crippling pain, not that flare ups do not occur, but they are not crippling and do not last for several months.  On my last vacation I was able to walk all over the place and enjoy myself and it was a profound difference.  Absolutely amazing.

So it really messed with me when I got nerve damage on my hand.  My neuro said from the constand migraines, which are neurological.  And he is likely right.  Hell, maybe it the nerve damage could be a comorbid condition triggered by the fibromyalgia since that is also neurlogical, that is just as likely.  Not that is really matters at this point.  What worried me was the possibility it was caused as a side effect from the Lyrica.  I have been reassured by a doctor and a pharmacist that despite what I located on the net, whatever long term study what found that may cause neuropathy from Lyrica use it is not sited as a side effect at all and they would update doctors and pharmacists if it was a concern.  So maybe it is less likely to be a cause.  The doctor I talked to said that I should consider that if I took myself off the Lyrica that I would have nothing to replace it with and that would in the long run cause more damage.  I realized it would cause pain, I am quite aware it was going to cause pain... and was going to reduce it very slowly because the pain I rememebered dealing with might in fact be worse than I remember now that I'm not dealing with it on a daily basis, so might be too high a price to pay.  But the doctor reminded me of what the drug is actually doing, not just what I feel as a result... and that is dampening that constant nerve signal being sent out to the nerves from FMS... and if I were not on the Lyrica that is what would happen and that might be damaging in the long run.  Which got me thinking.  I may not think of FMS as a condition that actually physically cripples, because it is so discarded by doctors, but when left untreated that house of cards effect does cause a great deal of damage and I wonder what that hyped up nervous system being on super drive might cause long term.  Then I got to wondering about this stupid neuropathy and my fear it might get worse, well, Lyrica being what it does is also used to treat peripheral neuropathy and by going off it, since I also have FMS, I might just make it way, way, way worse.  And, by that I mean, I had reduced by dose of Lyrica as a trial of 50mg for three weeks while I waited to discuss further with my doc... and the right arm, the one with the neuropathy got weaker and pain is now shooting up it.  Also pain in my knees, shoulders and general aches have increased substantially leading me to believe going off the Lyrica altogether would be extremely unpleasant.  Perhaps then, the Lyrica might be making the neuropathy better than it would be otherwise.  Or one can hope.  This doc said, it is better not to rock the boat, expecially when I am currently on a new medication for migraines and it is better to focus on managing them... (like that is ever going to happen... but then, would I really want to deal with constant migraines and horrific FMS pain and neuropathy pain?)

So stick with the Lyrica to manage the Fibromyalgia seems like an okay plan to me for now.  What I don't like about this whole thing is that I still don't know what caused the nerve damage in the first place, whether it was isolated or could potentially continue to progress, or whether it could happen again.  If I don't know the cause then I obviously can't know if it will happen again.  This doctor I saw said whether it was migraines or fibromyaliga that caused it, both being likely candidates being nerve related disorders, it doesn't matter she said my concerns about it progressing are real.  Having happened means it could very well progress but stopping the Lyrica is the worse choice, because of the long term damage FMS could cause and besides Lyrica would benefit the situation assuming it has nothing to do with the cause.  So that was no fun to hear, but at least honest.  And that sucks because my right hand is totally gimpy, clumsy and there is not real sensation or ability to feel texture, the left is just finger tips so far but I keep feeling like it is spreading little by little.  Maybe it is and maybe the left will be the same.  Maybe that fatigue and pain in my right arm is a sign that whole area is getting worse.  As a symptom, and one that does not fit under 'migraines' or 'FMS' it is very disturbing to say the least and I'm going to have to demand some follow up by my neuro, but I have a feeling whatever answers he finds it is a little late now that it has begun.
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