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This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby ANDRU on January 24th, 2003, 10:13 pm

After my last post, I realized that because of my long history of BFS (25 years), I might be able to offer some comfort to my fellow sufferers.

Anyone who suffers from this condition knows what I mean by the title. Benign Fasciculation Syndrome (BFS) is similar to herpes in that it is always with you, even if it sometimes goes into "remission". It may hide and not be a burden for days, weeks, even years -- but then it'll flare up again. As for the hiccup analogy: I don't think that needs explaining. BFS is irritatingly insistent -- shoving at you, tapping on your shoulder, pestering you while you try to read a book. Just like a bad case of hiccups, right?

SOME RANDOM OBSERVATIONS AND COMMENTS:

1) I don't know if sleep is a more powerful force, but in my experience, I don't often get awakened by twitching. Even if I'm having lots of twitching, eventually I drift off. Maybe the BFS "sleeps" too?

2) I get twitching all over my body(though not all at once -- usually in various combinations). For example, this week I have regular twitching in my right arm, my chest, my right palm, my left calf and my left buttock. Next week, it may be in other areas or not at all. Curiously, I almost NEVER get eye twitches. Could eye twitches be caused by a different malady?

3) I never have muscle pain due to twitching. The only time I experience pain is when I fuss with a particularly aggravating twitch, kneading and squeezing the surrounding tissue.

4) Caffeine doesn't seem to cause BFS or make it worse. HOWEVER, my experience tells me that if you're having twitches, coffee or tea makes you more sensitive to it, more aware of it. Same with marijuana.

5) I seldom have "big" twitches -- ones that make an arm or leg jerk. However, occassionally I'll get one of those "grab and hold" twitches in my buttocks and that really makes it hard to sit. Sometimes, I get a twitch in the fibers leading to a finger (or two) and that's super annoying.

6) I've twitched for more than 25 years and I know it's never gonna go away. But I take comfort in the fact that there are lots of worse muscular maladies out there and none have affected me. I've had to deal with this condition for so long that most of the time I don't even notice it -- certainly not when I'm working and exercising. And it DOES go into a sort of "remission" periodically.

7) I don't know what causes BFS, but after all of this time, I'm almost 100% certain that stress and depression aggravate the condition. Absolutely. Right now, I have some job worries and the twitching is in full effect.

8) Diet doesn't seem to have much effect on the condition. Nevertheless, I have a nagging suspicion that there might be SOMETHING we all have in common, vis-a-vis what we eat or don't eat. Could BFS be a food allergy of some sort? I think this is an area for further research.


If anyone would like to email me privately with questions or concerns, I'd be happy to respond and help in any way I can. Good luck!
ANDRU
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Postby germandude on January 27th, 2003, 3:22 pm

Thank you ANDRU!! This is a really reassuring post!
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