Long term BFS people 8+ years, can you help me?

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Long term BFS people 8+ years, can you help me?

Postby seanrblock on January 13th, 2015, 7:58 am

Hi all-

I have been around here since 2006. I have had many tests done and so far everything is normal. I am starting to see though that I am one of the longer twitchers. This worries me. I have had a few years of relatively few pops but now I wakeup with pops in my arms and legs everyday. Its just non stop. Can anyone who has had this more than a few years please give me some reassurance? I really need it now. Thank you.
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Re: Long term BFS people 8+ years, can you help me?

Postby fox2run on January 13th, 2015, 8:29 am

BFS is most likely a life-long thing that you have to live with. See the "BFS in a nutshell" in order to keep the symptoms at a minimum. I wouldnt worry too much. Work on accepting this as a natural part of your body instead. After 8 years it seems crazy to worry. I am also about 8 years out and my worries stopped years ago after seeking professional psykological help - i will say that it has saved my mental health. I think that this could be a path for you.
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Re: Long term BFS people 8+ years, can you help me?

Postby johnnythejet on January 13th, 2015, 9:42 am

What do you want reassurance for, specifically? I've been twitching for 10 years and I'm still going....probably will for the rest of my life and I'm fine with that.
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Re: Long term BFS people 8+ years, can you help me?

Postby emmie.s on January 13th, 2015, 10:48 am

I think that "once a twitcher, always a twitcher" is true. There are certainly times for me where the symptoms are improved, and then there are times when I feel like I am a walking popcorn machine. I would say that for me stress, caffeine, and diet make a big difference in the frequency of the twitches, but I doubt I will ever be "cured". Just last night my calf was cramping and woke me up, and I was twitching hard on this weird place on my chest, near my sternum. A few years ago that would have really freaked me out, but thank GOD I am past the giving a sh*t phase.
I don't know how reassuring this is for you, but just know that you're not alone. You just have to accept you have an annoying yet benign condition.
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Re: Long term BFS people 8+ years, can you help me?

Postby MarioMangler on January 13th, 2015, 3:34 pm

I will also chime in and agree that once you become a twitcher, you will likely always be a twitcher. And there are way worse conditions in the world to have, so I just consider myself lucky. I mean, odds are you are going to get -something- in your life. If BFS is the thing you are going to get, well that is like winning the lottery.

Your twitches will always get better or worse or change based on your current stress levels, your sleep patterns, and your diet. So odds are you are doing something bad right now. Work on that and the twitches will inevitably settle down and become less intrusive.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Long term BFS people 8+ years, can you help me?

Postby raindog on January 17th, 2015, 4:59 am

Agree with all replies thus far. We have to carry on and make the condition live with us on our terms and not the other way round. There are days when Its like war out there, but there will only ever be one victor. :wink:
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Re: Long term BFS people 8+ years, can you help me?

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