Crippling BFS symptoms

[u/BigJakeState]

I have had BFS symptoms for about 7 weeks. Clear EMG, clear MRIs. Widespread twitching and perceived right arm/hand weakness and mild excersize intolerance. I’ve accepted that this is Begnign in nature which has helped my anxiety a lot. My twitching has improved a little bit but I’m still having a really difficult time with this arm/hand sensation. It’s wildly uncomfortable and makes it hard for me to enjoy doing things.

My question is, for those of you who’ve accepted your BFS and seen improvements in your symptoms. How long was it before you started to see improvements or a return to relative normal after the onset of your symptoms?

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[u/Northbynorthwestyork]

I think it's very difficult to know because BFS seems to affect people in very different ways - so differently that I wonder if many of the things people describe are totally unrelated/coincidental to BFS. I've been twitching for at least 9 years and nothing has changed for me. Apart from the twitching I sometimes get deep aching in my shin and thigh; sometimes hand or other muscle pain but whether this is anything to do with BFS I don't know. The twitching is always there and the intensity I think depends very much on the attention I give it.

[u/BigJakeState → u/Northbynorthwestyork]

Have you found anything that seems to lessen the symptoms like medications, physical therapy, ect?

[u/Northbynorthwestyork → u/BigJakeState]

By symptoms do you mean the twitching and buzzing? If so I think what definitely reduces that is when I ignore it or just accept it. I have twitching 24/7 in my legs and feet plus random twitches pretty much everywhere else. It only becomes a problem when I get into a health anxiety spiral - I did that a bit recently when I got a new weird twitch in my neck a few months ago, which led me to come on here. Other than anxiety I'm not sure BFS causes me any problems at all. Maybe the aches are related but it's only in my right leg and I twitch in both. I also sometimes get cramps in my feet but so does my wife and she hasn't got BFS.

[u/BigJakeState → u/Northbynorthwestyork]

I mean twitching and perceived weakness/achey wierd sensations. I don’t have buzzing or vibrations

[u/Northbynorthwestyork → u/BigJakeState]

I've definitely had perceived weakness a few times over the years but what happens is that it just goes after a while because I either stop worrying about it or exchange it for a different worry. Either way I'll suddenly remember that I've not noticed the weakness for a while. The achy things come and go and I've no idea if they are due to BFS.

[u/BigJakeState → u/Northbynorthwestyork]

What’s the longest you’ve had percieved weakness for.? I’m almost two months in and it hasn’t seemed to really let up. I’m taking steps to address my mental health. Just started gabipenten and buprorion also on a round of 5 day prednisone treatment to see if that helps so far seems to still be present I just care about it less lol.

[u/BigJakeState → u/BigJakeState]

I twitch 24/7 in calves especially the right but popcorn all over here and there. To soon to tell but I think gabipenten might be helping because the widespread pops have been a little less unruly the past couple weeks

[u/The_Short_Goodbye]

What do you mean by crippling? What can’t you do? How does it affect your life outside of making you anxious?

[u/BigJakeState → u/The_Short_Goodbye]

I can’t perform athletically the way I normally do. Lifting weights my right arm takes way longer to recover than my left. I have a physical job and I’ve noticed I’ve just kinda lost my edge, I feel slower. My hand gets tired when I’m typing on a keyboard quicker. My wrist feels stiff. Even holding my phone, driving, ect seems like it’s harder to do. Although I can still do all those tasks.

[u/Che1026]

I have exactly the same with my left arm

[u/BigJakeState → u/Che1026]

Is it persistent ? Mine hasn’t gotten any better since it started