Recovered BFSer here, my 15-year experience

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Recovered BFSer here, my 15-year experience

Postby Rainyjane on February 27th, 2013, 12:23 pm

Hi, all. I thought I'd pop on here and share my story and give a little hope to some people. I consider myself recovered. I only notice the odd twitch every now and again. On occasion, I'll get a myoclonic jerk or two, but nothing disruptive... that started only 3 years ago, about. I can lie on the couch now and watch TV for hours and NEVER think about twitches. It's a far cry from where I started. I think we are out there, those of us who got over it, but many people think "I'm all right, Jack!" and never come back to share the experience.
I started twitching one day sat at work. I lit up like a Christmas tree! They were everywhere constantly and gave me no peace and did not stop. For 2 years they were strong, the first being the WORST. I had been having many bouts of anxiety and hypochondria. I am sure, in my case, it is related to hypochondria. I had all the usual tests, had them again a few years ago when I got some myoclonic jerks I hadn't experienced before. I've only had cramps twice. The second time was related to stopping Valium too quickly I believe, maybe the first too. I used to get "trends" I'd call them, when I'd have a twitch somewhere for 2 months or my thumb would move once in awhile for 3 months, etc. Finally I realised they were short-lived "trends", not here to stay.

I did notice that when I got my mind off the twitches and was busy doing something, HARD to do, but sometimes happened, that they would get better. In the late '90s, there was very little on the internet about this condition. Actually, I don't remember anything. I went to the medical library and found an article. It was a study on BFS, and it said a good percentage of the people who had it from this study were medical students. It made me wonder if it was related to hypochondria, in particular, as medical students think they have everything! Anyway, I always believed my doctors and never thought I had ALS after the initial diagnosis and my neuro told me I had "as much chance as anybody" at developing such a disease. I was pretty rational about that.

I read once on a forum that a girl was told by her neuro that BFS is usually a 10-year course. I don't know where he got the figure, but in my case, it turned out to be ABOUT 13, with many, many of the latter years being good, peaceful years, being able to lie on the couch and not notice twitching, etc. I have to say, I was warned by my doctor NEVER to research on the internet, VERY GOOD advice I reccomend, as I've had a few extra twitches just reading posts on here! lol. Valium has helped me immensely, tho I had to stop. I believe it caused memory problems, tho I can't be sure! What helped the most was going on with my life and having a busy social and work life...

Anyway, TODAY I'm a million miles from where I was! (End of my word count! :)
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Re: Recovered BFSer here, my 15-year experience

Postby johnnythejet on February 27th, 2013, 2:17 pm

Another success story. Just like so many of us that recovered, once we effectively remove focus and get busy with real life our symptoms melt away and no longer affect us. Thanks for stopping in!

Cheers!!
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Re: Recovered BFSer here, my 15-year experience

Postby jerry2 on February 28th, 2013, 1:08 pm

I think there are more than one type of BFS. Mine is the type that I have hard time lifting a basket because of pain and is sure is funny you always say to move on and BFS doesn't affect us any more. If you are only twitching, sure you can (hard, but twitching isn't crippling), but with pain it is a different story, sorry.
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Re: Recovered BFSer here, my 15-year experience

Postby Rainyjane on February 28th, 2013, 9:42 pm

You probably have something different to me. I was just directing this at people who were similar to me it might help. It's MY story...
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Re: Recovered BFSer here, my 15-year experience

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