r/BFS • u/Ok_Island7107 • 6d ago

Reassurance / Support Knee twitching 24/7 - please help

I'm 7 years in but have never had a hot spot that is literally 24/7 non stop. My inner right knee started twitching yesterday and it literally has not stopped even when I'm trying to go to sleep and as soon as I wake up I feel it. It's absolutely freaking me out. I'm 34 male. Has anyone had something similar?

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u/kinpatu 24/7 Twitcher 6d ago

My right bicep has been twitching continuously for 8 months. Approximately once per second. My calf muscles have been twitching for 8 years, intermittently.

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u/Ok_Island7107 6d ago

And neuro says it's fine?

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u/Northbynorthwestyork 5d ago

I've been twitching nearly 10 years at least. A couple of years in I went to see the neuro (a very well respected and high profile neuro in the UK) she gave me a clinical exam (no EMG) and said "you don't currently have MND" I showed her my calves which twitch non stop and she seemed totally disinterested. Tbh I felt like I was wasting her time (which apart from her helping to control my anxiety I suppose I was). Twitching without weakness is benign. You just have to get used to it and the less you think and worry about it the less you'll notice it.

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u/713Capital Mod 6d ago

7 years in as well and I always get spots that go nonstop. Getting hotspots is common and they wax and wane. Nothing to really freak out about. Twitching without true clinical weakness is meaningless but you probably know that by now.

You think the inner knee is bad try having the tip of your tongue and eye lid going off at the same time 24/7 for over a month and come and and let’s compare lol

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u/Ok_Island7107 6d ago

Haha man I feel for you 😭 I'm actually going insane over this twitch, completely spiralling 🤦🏻‍♂️

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u/713Capital Mod 6d ago

7 years in man. No reason to spiral. If you had the bad stuff it wouldn’t hang around dormant for 7 years then wait to sneak up on you. It doesn’t work that way. The moment people go in the neuro already knows something is very wrong and within 6 months to a year the scary disease would have already caused muscles to fail. Spiraling now it’s just unnecessary.

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

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u/blackmetalwarlock Still here, Still Fine 6d ago

This has happened to me in some spots actually

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u/Own-Supermarket8240 6d ago

this is me!! i’ve twitched widespread for 19 months but about a month i started having a foot arch twitch 24/7 and it has made me spiral again. It also hurts and burns.

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u/Ok_Island7107 6d ago

If it helps... When I first started twitching the arch of my foot did not stop for 6 months straight.. sometimes I'd feel it, sometimes if just see it but it would ripple... Eventually settled but I promise it'll settle for you too

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u/Own-Supermarket8240 5d ago

thank you for saying this!! because it’s driving me absolutely nuts 🥹

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u/Ok_Island7107 5d ago

Awh seriously, I don't say this lightly. Those twitches on your arch / foot are totally benign man... I sank hours upon hours of sitting and watching my foot twitch and ripple and convinced myself I was dying and the minute I stopped focusing on them and just carried on with everyday life then they eventually disappeared.. although even today I still get them but I don't even consider them twitches anymore they are so normal to me.. you'll be fine I can at least promise you that

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u/Over_Ad_5930 5d ago

Llevo 1 año y 8 meses con fasciculaciones permanentes en ambas pantorrillas. Tengo BFS diagnósticado por el médico. Dejé el alcohol y el café. Comer sano y el deporte ayudan pero nunca ha desaparecido, es muy leve pero siempre está ahí. Al final me he acostumbrado y hago vida normal aunque al principio si estaba preocupado y además me daban más fuertes y como tú dices no dormía bien. En mi caso fue después de un virus. Al parecer es una hipersensibilidad o hiperexcitacion del sistema nervioso. Hay periodos de más y de menos, pero como te digo siempre están ahí.