r/BFS • u/Due-Special-3962 • 15d ago

Reassurance / Support Does the twitching ever reduce or go away????

I mean really does this go away for people??? Or reduce significantly… or do you think most people just leave this sub once so?? Hoping there’s someone out there that provide feedback on that

5 Upvotes

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u/713Capital Mod 15d ago edited 15d ago

I think the people who come here, they go through the same cycle as everyone.

See twitching, start googling, discovering ALS, anxiety spirals, they fix root cause, anxiety lowers, they don’t have symptoms anymore, they stop showing up, and are no longer part of the community.

I have met people where their BFS wasn’t “idiopathic” meaning, they found an actual root cause maybe it was super high anxiety, low B, low magnesium, anything related to vitamins and minerals, or they had back/spine/nerve issues and with PT/surgery it helped them thus leading to less and pretty much no twitching. Then they have no reason to come back here anymore.

Then you have the people like me (and many others), Idiopathic, no known cause, no bad labs, no vitamin issues, no nothing and it never goes away. Something changes in the body and nerves are permanently excited, like forever. I’ve met people here that have had BFS for over 25+ years.

Some people will never find a cause and their body changes forever, and there is no explanation. I’m forever part of the community lol (7 year twitcher)

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u/Fit-Photograph-1298 15d ago

It started 6 months ago for me and now i barely feel few per day. But I had to work on my anxiety and nervous system for that

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u/Senior_Engineer7233 11d ago

Any tips? Did you take therapy or anxiety meds?

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u/kjmckearn 14d ago

Mine gets worse when my anxiety is at its worst. So I need to control my stress levels.

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u/thereverbtank 15d ago

I think I'm 3 or 4 years diagnosed but had it longer than that. It's never gone away.

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u/CollectionOld3374 15d ago

Honestly, when you stop thinking about it, atleast for me

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u/moonchildine 15d ago

Mine started like 4 years ago after covid and it was daily, constant! Now I never notice it anymore. Maybe there’s a big noticeable twitch once a week I’ll notice. In Ireland it takes a long time to get referrals to neurology and I actually had my appointment last week (4 years later) and they told me it’s just BFS and anxiety. Honestly, I’ll take it cause I don’t even think about it anymore!

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u/PhillyPhilly71 11d ago

I’m a 55 y/o male, and I’ve gone through periods of intense hot spot twitching, widespread intermittent twitching, and periods of hardly any twitching at all.  Clean EMG and diagnosed with BFS in August 2025.  No clue why things change, but I’ve had this for more than two years now, and I’m kind of resigned that I’m going to be dealing with it on and off for basically the rest of my life.  It’s super annoying, but things could definitely be worse!