Looking for BFS Support Here

TwitchyGambler

Well-known member
So as you know my neuro thinks I have fibromyalgia. The next thing you may be thinking is why am I on this board and not the Fibromyalgia board. Well I visited that place and talk about a tidal wave of estrogen. I don't mean to crack on people but jeez --pity party. The terminally ill websites have happier people. Anyway I am here because my dad was diagnosed my a renown neuro with BFS. I have the same symptoms that he had. I have a few additional symptoms but we are close in comparison.I was given Flexeril last Tuesday and I took it for two days and no kidding my twitches that were tapering off came back full force and then I felt hung over. Why would this make my symptoms worse. My DR said goodbye to insomnia and to my twitches. I did sleep one of the nights but the twitches got 10 times worse. Why would a muscle relaxer make things worse? I was wondering if he gave it to me because he thinks I have Fibromyalgia or because of the twitches. I saw on some website that it has been prescribed for Fibromyalgia and i was wondering if any of you were giving flexeril?
 
TwitchyGambler - I was Rx'd with the timed released form of Flexeril (Amrix) about a year ago. It helped with my muscle cramps but your system becomes accustomed to it quickly (this is why all the drug info states these drugs are to be used short term as in 2 weeks). So you have to increase dosage after ~10 days for it to keep working only this isn't a good idea for this class of drugs. I didn't notice that had any effect on twitches either but have never been very concerned with them. My doc said to try it for a month and the 3rd week I was taking twice as much and then decided I'd stop and had withdrawal symptoms. But I am a real lightweight when it comes to pharma and have had little success with most Rx'd drugs. It did make me a little hung over also. I don't know why he'd Rx this for twitching you'll have to ask him. As far as it making things worse who knows - maybe you could just feel them more since your muscles were more lax? My doc (neuro) didn't seem to even be aware that I shouldn't be taking the drug for more than 2 weeks but he did, LOL, give me some discount coupons so maybe there was some kind of big pharma thing going on with that although I hate to think he's be so persuaded, I kind of like the guy. :(
 
Ha ha! Go post something on there and see what you get. I like a more straight forward response. I am sure they are suffering but I need positive happy people no matter what unknown storm we face. I have been crazy since this started. I couldn't believe all the twitches I had and how violent they were. I knew I had something terminal. This board has given me peace. My twitches are 85% less but I still have the soreness. (Thats why my doc thinks its fibro) That and my great grandmother was a Cherokee Indian and they have Fibromyalgia history. I thought about wearing an indian headress next time I go and see my neuro. I will tell him I am getting back to my roots.
 
For what it's worth, I was on Flexeril about two years ago. Not for BFS but for neck spasms. I HATED Flexeril. Made me feel way too woozy and wobbly. I only stayed on it for about a week.
 
After having read thousands of posts here, and also my own experience in the area of chronic ailments, I am inclined to think that many of these conditions are related. There is definite cross-over between bfs and fibro; not the least of which is the non-specific nature of both. I view them as different manifestations of the same catalyst. I also am inclined to think that CFS could be included in this group; and probably many others. Somehow the Western world has become afflicted with these benign ailments that in some case can seriously affect the quality of a persons life. It is due in part to our lifestyles, in my opinion, and also due to the fact that we have become disenfranchised from ourselves. We no longer identify ourselves as part of a community, which has lead to individualism, which has in turn lead to isolation, in many cases. Our hearts were born speaking a wonderful language, but over the years we have forgotten our mother tongue. Our hearts speak to us often, but we can only understand some of what they say, as our learned language has taken over prominence. Separated, as it were, from our roots, we are susceptible to the impressions that are outside, and hence, our true natures are forever stymied in their attempt to find fulfillment. Once I was over the fear of bfs my twitches subsided quite a bit, and some days I would not be aware of twitching at all. I regretted those days. I wanted to still twitch, because it gave me a sense of identity, it allowed me to experience life in a different, more important, way. It also allowed me to remain part of a community, a community that allowed me to be me. Over the years the inevitable happened and I no longer saw myself as a "twitcher," but I never lost the awe in which I viewed how special it was to be alive at this very moment. Now the journey is to relearn my mother tongue, and reacquaint myself with things I had long forgotten. It's truly amazing to rediscover a zest in some area that you thought you had long since put to bed. It doesn't have to be anything grand, either, it can be as simple as biking, or watching birds, or perhaps it is writing that book you've always felt inside.In a real sense, when we learn to love our lives, again, we defeat our ailment, because a directed heart and bfs can't exist on the same plane. Basso
 
Well, I know what you mean, Barbie. I can still feel the twitching, and almost everyday. But they are part of the background noise. I'm also aware of the non-twitching me and in that there is balance.Basso
 
It seems EyeoftheWild is moving on from 'saint' to 'sage'. Most of us, after a time, seem to go this path, we just reach a point where we look within and find answers and solutions, or we learn how to live with our new selves, or we experience our life on a different (albeit adjusted) level. Another reason for newbies and those in the earlier stages to feel hopeful as it is a positive trend and pretty consistent with those who report back after years. :unsure: :) :D)
 

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