My story as a twitcher

BFS Online Support Group

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My story as a twitcher

Postby SusanSid on August 28th, 2002, 1:41 am

I am a BFS sufferer and am so glad that this website exists. I just wanted to share my story with others. I have been on this website hundreds of times and have never had the nerve to post a message, so here it goes.
Looking back, I think I've had BFS for over 13 years. Back then they worked me up for everything...all was fine. I had sypmtoms of twitches all over my body, body pain, needles and pins feelings etc. This left as swiftly as it came. Since then after exercise I noticed the popping feelings in my legs, again on and off as well as wierd body symtoms that amount to zip. Then I would get a muscle or group that would twitch, such as a chest or thigh muscle. Again, it was go away after a few days or weeks. Even eyes and lips have done the twitch-a-thon.
What sent me in a tail spin was the fasciculations I started having in January when I was doing a lot of exercise. I made the mistake to looking it up. Well.....ALS, death, doom, you know the story, is all I could find. I'm a nurse to top it off, so I really went nuts with this.
After much research and doctor visits I realized that it's been BFS all along. Mind you, I still get that crazy thought that just maybe it's something more serious, but make those thoughts come to a screeching halt. The symptoms truly can ruin a persons life if they aren't kept in check.
My symptoms were the famous twitching, mainly in calves and thighs. However, I can have lip, eye, back, thigh, arm twitches here and there. I did have a period where my arches of my feet really hurt with the twitching, no longer. At times the fasciculations are nuts, and times I can't even find one. It really varies. I've done the relaxation bit, even tried Celexa (an antidepressant which made them them much worse so I stopped), massage, B12, Magnesium, B complex blah blah blah. I think the B12 helps, and stress is the big factor. If I don't get enough sleep, am stressed etc. the twitches get much worse.
I have made the mistake to go on ALS websites and see bulletin boards where people battle out who knows more. I'd avoid those websites if they are upsetting because I think a lot of people get off on being a know it all and scaring people. I find this website perfect.
Anyway, I hope I may have helped some of you. I know it's scary for all of us. My recomendation is to take care of yourself, reduce stress, don't obsess about every body sensation, keep yourself busy, mediatate or pray daily, think positively, embrace each day.
I will never forget something my grandmother told me. My grandfather was 18 years older than her (robbed the cradle, lol) and she had TB as a child. She was so ill as a child she was sure she would die before him and have a short life. Well....she lived to be 95 (he died 16 years prior) and laughed with me that she never thought she'd live this long and wished she had enjoyed life more instead of planning her funeral. She was a wise woman.
Stay healthy and happy my fellow BFSers! :lol: :lol:
SusanSid
Selfless giver of time
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Posts: 172
Joined: August 15th, 2002, 6:01 pm
Location: California Central Coast

Postby Arron on August 29th, 2002, 12:38 pm

I hope people can see that someone can have this stuff for well over a decade without any major problems at all, other than the basic BFS pain in the butt problems we all experience. I have seen posts from people that have had what they think is BFS for over 20 years, so hang in there and relax. Thank you Susan for finally being brave enough to post. Your story will no doubt help other's feel more at ease. :-)
Arron
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Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

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