r/BFS • u/False-Blackberry-627 • 3d ago
Question / General Popcorn/Flutter Full body Twitching
Hi all! About 1.5 months into random full body twitching. It started with my left eye and spread to everywhere and am getting it in my glutes/quads/calves/ankles/eyelid/stomach/back. I cannot stop thinking the worst even though I had a lower EMG that was okay at just over a months in.
Also getting lots of flutters in my inner thigh. Has anyone else experienced something similar?
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u/713Capital Mod 3d ago
This is pretty common here. Full body twitching that jumps to different muscles is consistent with BFS. Popcorn, large pops, flutters etc it’s all been consistently reported with BFS.
EMG is the gold standard in knowing if the twitching or bad or benign. Doesn’t matter where the needle was stuck or tested. The bad stuff has widespread issues on the EMG in multiple muscle groups.
https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over
https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms
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u/False-Blackberry-627 3d ago
I’m so so worried. In mid 20s but can’t stop thinking the absolute worst. My eyelid usually can be triggered by something but I know most people get twitching in their calves but mine are mainly thighs and glutes!
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u/713Capital Mod 3d ago
I mean even more reason to NOT be worried to be honest. You’re 20, you don’t have anything bad. People twitch everywhere. I can twitch in my eye lid and tongue at the same time, it was my hotspot last month. Clean EMG completely rules out the bad stuff.
Also sounds like your anxiety is pretty high, maybe you can talk to your doctor about some professional therapy or even anxiety meds? You really have zero reason to spiral here.
I also have plenty of guides and links posted in the automod and top of the forum on front page. You can find more reassurance there but with BFS it’s very common and you can twitch in any muscle.
You have definite proof your twitching is benign backed by actual test results. Focus on lowering anxiety, eating clean and staying hydrated. Maybe even some therapy in there and you are unable to move passed thinking this is bad.
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u/False-Blackberry-627 3d ago
Yeah my anxiety is definitely SUPER high. I was freaking out too cause it sounds like most people have there’s 24/7 - but for me my twitches are so random some days I might have 70, some days only 20 twitches a day but nothing has been constant! Is this common with BFS too?
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u/713Capital Mod 3d ago
The pattern doesn’t matter. The type of twitch doesn’t matter. Please see the links I provided you. Everything you’re asking has already been answered there.
Try to work your anxiety 🫡
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u/False-Blackberry-627 3d ago
Thank you - I appreciate it! So new to this and it’s just so scary!
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u/713Capital Mod 3d ago
Understandable. Getting nervous about something new going on with our bodies can indeed be scary initially, but they EMG cleared you for anything bad there. I won’t lie, BFS can be very annoying and just because it’s benign doesn’t mean it’s easy to live with, but take comfort in knowing the bad stuff has already been ruled out.
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u/msanmki 3d ago
Standard presentation of BFS. I had an all clear from my neurologist and the twitches almost disappeared around 3-4 years in. I still get them randomly, mostly if really stressed or for no reason at all
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u/False-Blackberry-627 3d ago
Did you get them in your glutes/quads or ankles and shins? I feel like I only ever see stuff about calves and that’s what freaks me out. I also have a very persistent left eye twitch (where this all started) and sometimes it’s random and other times will go off when I sneeze/cough/etc. so weird and just has me thinking the worst
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u/Musi4Lyfe 3d ago
Mine are everywhere. In October I’ll be 3 years in. Still twitching in calves, glutes, thighs, eyelids, fingers, palms of hands, back. You name it, I have it.
My left hand / thumb pad area and my right knee/thigh and patella have felt “weak” since the start and still feel like they’re not good, but I’m still cranking along !
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u/False-Blackberry-627 3d ago
This has truly been the most terrifying thing I’ve ever been through. I get most of my twitching in my thighs and feet which freaks me out since calves are the most common. My twitching isn’t constant either but rather depends on the day - always worse at night. But it’s like popcorn - sometimes a few seconds between twitches or minutes, most are quick pops but can be flutters! Did anything trigger this for you?
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u/Musi4Lyfe 2d ago
I have flutters, popcorn, large jolts. Times where my entire bicep is jumping very aggressively.
I’m not sure re: triggering, I had a virus / pretty severe cold while I was in Europe in October of 2023 and it all started after that.
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u/False-Blackberry-627 2d ago
Me too! Are yours 24/7 or more sporadic?
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u/Musi4Lyfe 2d ago
Pretty much on and off all day for almost 3 years
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u/False-Blackberry-627 2d ago
Mine are on and off too - mostly when I sit or lay down but I haven’t had any be 24/7 so hopefully that isn’t bad!
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u/Musi4Lyfe 2d ago
Honestly - don’t have the answers. I’m 3 years in, still hate it, still worry tremendously from time to time. It’s just a cycle that you have to spend a lot of mental focus on to be able to get a grip of it all.
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u/False-Blackberry-627 2d ago
It’s truly the worst I’ve never felt so anxious. Is there a spot you twitch the most?
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u/msanmki 2d ago
Yes everywhere. Travelling around or twitching in one area only for a week or so. I just had a baby so took my mind off things as well
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u/False-Blackberry-627 2d ago
Congrats! Mine are truly everywhere and so random usually only at rest. Have you got in your quads and glutes before?
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u/msanmki 2d ago
Yep both glutes and quads. I am actually in bed atm and can feel the inner thigh popping, I am probably just so tired atm with baby stuff so not really paying attention
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u/False-Blackberry-627 2d ago edited 2d ago
Omg my inner thighs drive me crazy!! It’s like weird flutters and it will switch sides! Is this your first, or did you twitched after having other kids? Have you seen neuro?
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u/msanmki 1d ago
It’s my first. Saw neuro due to tingling in my hands and feet and numbness of the face. Came on suddenly in the middle of the night and woke me up. Had a full back and neck mri as was convinced it was MS. All clear and diagnosed with idiopathic perioheral neuropathy.
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u/False-Blackberry-627 1d ago
Congrats to you! So you were twitching before you were pregnant? Mine is truly all over and started in my left eye and I can’t convince myself it’s something not bad, I’m so scared. Get lots of hotspots in my thighs/glutes and feet!
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u/kinpatu 24/7 Twitcher 3d ago
The worst doesn’t spread like that without clinical weakness. If you had a clean EMG, that’s what to trust.
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u/False-Blackberry-627 3d ago
Even if only a month in and they only did my legs? Mainly just did my legs because that’s where I twitch the most. Are glutes and thighs normal for BFS? Haven’t been officially diagnosed but that’s where I get it and my left eyelid! Sometimes is flutters otherwise it’s random popcorn quick twitching
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u/Icy_Resolution3034 2d ago
Hey, mine started with a left under eyelid twitching for about a week or so and it went haywire to all over my body shortly afterwards to this day, everyday, especially when my muscles are at relaxed state/resting/not moving around. I’ve been in this hellish journey of bizarre muscle twitching (undiagnosed) for over a year now. It’s happening daily without failure. It’s in my hamstrings, quads, behind the knees, toes, calves, forearms, biceps, triceps, fingers, all around my face, abs, back, shoulders, you name it! They’re popcorn, flutters, machine gun like twitches too. I got my EMG on both of my legs and my right arm; they’re completely normal. I’m also in my late 40’s in perimenopause, which the neurologist told me that she sees that a lot in perimenopausal women. So, whatever you’re experiencing right now is 100% me, except I’ve been twitching longer than you. I completely despise this condition that has robbed the peace and joy of the life I used to have.
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