Benign fasciculation syndrome (BFS)

I so know what you’re going through…. It’s been almost 5 years for me with constant twitching…. In perspective about 20 twitches an hour in different places…. Sometimes even the sides of the bones of my knee and elbows….. mri… hosts of other tests such as an Ana for auto immune diseases… all normal…. No muscle weakness… I’ve actually got much stronger with my exercise routine… still twitching…all I can say is I don’t let it bother me anymore…. But at first I panicked thinking it was ALS or late onset MS .. sometimes BFS goes away on its own or be lifelong…. I narrowed down when my symptoms started… I had a ongoing tooth infection that I let slide for months before taking care of it

Thank you so much! And likewise.

That’s exactly like me. Constant twitches and internal tremors. So frustrating. For me it’s only been a few months since I’ve really started to notice and become annoyed by it. I still have strength and feel fine except for lack of sleep due to the twitches interrupting my sleep quality. If I find anything new to try, I’ll be sure to update here

Yes, I would say I have too many twitches in an hour to count! Not all the time though. My arch of my left foot has been twitching since July!

I have perpetual twitching in my calves and very frequent in right forearm and everywhere else. I've had them for 16 months now. No known cause for why they started except I had COVID a few months prior. I've tried everything... I mean everything. Nothing has helped at all so far. They bother me more when I'm in a bad mood and didn't sleep well, which is most of the time. I'm always seeing new docs and trying new medications to see if anything helps. Generally the medications are for sleep/anxiety. Benzodiazepines help with mood temporarily and muscle relaxers can help a tiny bit with pain/sleep.

I am thoroughly disappointed in the medical community for not studying this syndrome. If nothing else, it would be lifechanging to have a treatment that reduces fasciculations.

Mine never get better or worse, they're like clockwork. I get a thump in my calves every 1-3 seconds, day or night for 16 months. It doesn't wax or wane or anything like that. It just goes and goes.

If my calves would calm down to 1 twitch every 5 minutes or something I feel like I could maybe accept it. But the perpetual thumping is maddening.

I've been to Mayo and they just said idiopathic no treatment. They did recommend CSS therapy which is sort of like a CBT and acceptance therapy but I can't attend due to my location. So it's really not on the radar of medicine. It's considered completely harmless and an over exaggeration of a common sensation in highly anxious people. But I can promise that I'm experience more fasciculations than the average person, and that I'm not overreacting to them. Anyone feeling these would be as upset as I am. I'm not being a hypochondriac even though that's how the medical community treats it. I do agree that hypochondriacs are predisposed to developing BFS though. But that shouldn't be the end of the medical discussion.

I, just like many of you, have had a constant 24/7 twitching across the board. It is in my calves mainly, it also occurs in my arms, shins, buttox, neck, hands, feet, and even in my eye. It started about 4 months ago when I began to lose a massive amount of energy. I'm a swimmer (or was) and a cyclist and I had bags of energy when suddenly, almost overnight, I didn't. I started feeling 'digging' or prodding sensations across my body and also burning sensations in my feet. I also started feeling little 'touches' or odd sensations across my hands and feet.

I then started to get an extremely dry tongue that unbeknownst to me actually developed into thrush. This took 3 months to discover by the doctors whom I mentioned my tongue to 3 times.

I went to the doctor and after a few blood tests, I was found to have folic deficiency. At this point, I was told that everything would clear up and that it would be okay but they wanted to check for celiac disease just in case. I was all clear of that but then I was told there was some protein in my blood and they wanted to check for myeloma/amyloidosis. Because of our blood test waiting list at our GP and through a set of really bad circumstances, I had to wait just over a month to hear the results (they clearly didn't think the test was that important, and the doctor didn't even give me the all clear until my catchup appointment with them). During that time, I did the insane, stupid thing of looking on the Internet and worrying myself silly. I started to develop a scalloped tongue (a symptom of amyloidosis), which was unknown to me at the time and was likely down to my thrush and/or my developing anxiety, so, of course, I fretted even more. I was close to panicking. (More on this later).

I went back to the doctor and told them about my tongue, they didn't seem that concerned (without taking a swab or inspecting that closely) - and I was on my way again. My tongue, by the way, was filmy and scalloped quite badly.

It was around this time that I fell off my bike and cut myself up pretty badly. About 2/3 days later I had a rush of pain through my head on my right side in the temple, like a severe burning. The back of my head started to twitch and then it moved to my left eye. A few days later, maybe a week, twitches and popping/buzzing sensations in my calves began. It took a week of this, worry and fretting before it turned into very fine movements, sometimes undetectable by feel in the legs, which you only know is going on if you look, which has been ongoing now 24/7 for over 2 months. They developed into twitches and buzzes in the arms, legs, buttox, lip, and neck - my right peck even buzzed for a day or so before stopping.

I finally went back to the doctor for my protein results only to be told that I didn't have any cancers, I told them about my twitches but because she couldn't see them in the appointment ( as they were at this stage very fine) she told me it was stress and to stop worrying, stay off caffeine, etc. She did a rudimentary strength test on me and told me that I didn't have any clinical weakness that she could detect. She finally swabbed my tongue and told me I had thrush which is all sorted now.

Since then I have gotten worse. I think my mind has swapped from thinking it was cancer to thinking it was possibly MNS/ALS and my body has just gone crazy. I know logically that ALS has far different presentations including clinical weakness that isn't perceived and is a 'doing' issue rather than a 'feeling issue' but I am now having periodic stabbing and prodding pains - I keep overly checking my body. I have what I can describe as 'wet pins and needles that sweep across me from time to time and I feel utterly fatigued; all the while twitching and shuddering and buzzing constantly.

I am going back to the doctors and readdress this as i feel something is missing that they didn't check. It's been a nightmare.

@nohey

You have a lot suddenly going on. I’ve had all those type of issues for decades with my hereditary neuropathy except the tongue issues. You mentioned doctors but didn’t say what type. Have you been seen by a neurologist? They might consider nerve tests, brain MRI and such to shed some light and rule things out. Take a video of twitching to show the doctors since it doesn’t always happen in front of them. I hope the doctors take your ongoing concerns seriously. I also hope it’s something temporary. Prayers for you.

Thank you for replying,

Yes, i am going back for exactly that, to see a specialist. I saw more regular GP; not a neurologist.
Thank you for your kind words, Zebra.

It does sound like you have had a lot of stress and anxiety particularly around your health when the twitching started. That's a pretty common scenario. Usually folks like that who get professional help to reduce their anxiety and ignore the twitches see their symptoms improve. I'm a bit jealous as mine don't seem to be related to anxiety and have no treatment course.

The only research I've seen on BFS treatment was that Lexapro, Mirtazapine and cognitive behavioral therapy reduced twitching in most patients when anxiety was the likely cause. I'm at the point where I'm willing to try it just for the hell of it because I've tried everything else.

I wish Mayo would put some serious effort into researching BFS and treatments. It would be absolutely life changing if a treatment was found to reduce fasciculations. I can't express in words how much I hope this would happen. It's a devastating syndrome for people who get it really bad like me.

Hi. Like so many others, it is comforting to know that I am not alone. I am 70 and in excellent health. I exercise regularly via surfing, yoga, bike riding and walking. I have an extremely low athletic pulse rate and excellent blood pressure. We eat a healthy diet. My fasciculations began on September 12, 2023. After surfing several hours that day I noticed my left calf twitching all over which had never occurred before. The fasciculations in my left calf were and are nearly constant. They also occur in my right calf but with much less severity. The fasciculations began 5 days after I stopped taking Crestor because I was experiencing a lot of muscle cramps in my calfs which is a common side effect of that medication. Whether there is any connection with stopping Crestor and the onset of my fasciculations other than a temporal relationship is puzzling to me. Oddly the only thing that seems to abate the constant twitching is strenuous exercise with weight machines at the gym. My lower legs then feel slight burning sensation but when that passes, I have few if any fasciculations for about 12 hours before they slowly return. The symptoms are helped with meditation and yoga. I have no symptoms whatsoever when standing, walking or exercising and feel completely normal until I sit or lie down. Then they resume. I have no loss of strength or muscle wasting. The spasms in my lower legs and occasionally in my toes initially ended after ceasing Crestor but now are slowly increasing. I was recently examined by a Neurologist who found nothing clinically wrong with me except the fasciculations. I was diagnosed with BFS. As all of you know, they are very disturbing, disruptive and cause tremendous anxiety. It puzzles me most that they could arise completely out of the blue with no triggering mechanism after I have enjoyed excellent health. I would welcome any input, thoughts or suggestions. Thanks in advance.