1. < Brain & Nervous System

Benign fasciculation syndrome (BFS)

Posted by captainanxiety8 @captainanxiety8, Mar 10, 2019

Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.

Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?

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thenewrick | @thenewrick | Sep 30, 2023
In reply to @rtresher1 "Hi. Like so many others, it is comforting to know that I am not alone. I..." + (show)
@rtresher1

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.

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There isn't much you can do about it. Try and ignore it and get good sleep. Medicine hasn't studied fasciculations much and there aren't any reliable treatments. It's incredibly frustrating that the syndrome is not researched.

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Zebra | @californiazebra | Oct 1, 2023
In reply to @rtresher1 "Hi. Like so many others, it is comforting to know that I am not alone. I..." + (show)
@rtresher1

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.

Jump to this post

Hi @rtresher1
First of all, kudos to you for being in such good health generally. I don't read a lot of that on these message boards.

This message is not medical advice, just reason to have hope. Just reading your story, my gut reaction is that going off Crestor is related. Like many meds, I read that statins are a med you need to go off of slowly to avoid withdrawal symptoms. I've had withdrawal issues from going off different meds and they can be crazy and last for weeks or months. I also read that one of the issues going off statins can cause is peripheral neuropathy and symptoms of that include twitching and muscle cramps among others. You know the statins caused muscle cramps for you so it makes sense going off of it could impact muscles as well. Since withdrawal is a possibility, it seems there is hope that the fasciculations will resolve on their own. They are very annoying and only noticeable at rest as you have discovered. Good that you sought advice from a neurologist who believes it's BFS and harmless all except for driving you nuts.

I had fasciculations for years starting in my 20s due to my neuropathy then suddenly they stopped from about 40-55 years old. It was a mystery why until I went off atenolol, a beta-blocker for blood pressure. Within days, the fasciculations were back with a vengeance and turned into violent muscle jerks and cramps in my feet and calves within 5 minutes of resting. I was jumping out of my chair and bed all night. I had been on atenolol for 15 years. Aha! I started taking the atenolol again, the cramps stopped and facsiculations improved about 80% over time, but never completely went away again. Darn. Now one of my cancer meds has caused my blood pressure and heart rate to be dangerously low so I really need to be off atenolol as its piling on. I'm trying to wean off slowly this time. I cut my dose in half a week ago and already the fasciculations have really increased in my legs and now in both eyelids which really drives me nuts. No muscle jerks or cramps yet though. I'll do this dose for a month, then if still tolerable, I'll try cutting it in half again and then zero. Not sure I can completely go off, but both my heart rate and blood pressure have already gone up and are closer to low normal now so I'm hopeful I can at least stay on this lower dose for improved health. I really don't like meds. They are a bartering system of trading one issue for another. Sometimes it's a good trade, sometimes not.

Praying that your BFS issues are only temporary. 🙂 Oh caffeine and chocolate (which has some caffeine) will make all my neuro issues worse so maybe test cutting back on any caffeine just to see. Best of luck to you! Zebra

REPLY
1 reply
hlab27 | @hlab27 | Oct 5, 2023

I have had calf fasciculations for so long I can't remember when they became evident. Thankfully, they are pretty localized and don't cause me any problems. Although I have not received a formal diagnosis, I likely have BFS. Reading more about it, I see that it also may be why I tend toward spontaneous muscle cramps, especially in calf and foot, which can be quite painful and troublesome. Those have been a thing from childhood on. I'll throw in yet another possible correlation to the mix of "what abouts."

I had a particularly bad cascade of multiple body-wide, autoimmune-type symptoms several years back following an intestinal viral bout. I eventually found a possible reason after visiting a rheumatologist and getting some genetic testing. I have a particular gene, found by an HLA B27 test, that was triggered, likely by some virus back in my youth, and has been associated with a great many seemingly unconnected maladies. As I researched my own medical history, back as far as my early teens, I kept finding more and more things I have experienced which have since shown a correlation. Some people with it can develop ankylosing spondylitis, reactive arthritis, psoriatic arthritis, uveitis, or inflammatory bowel disease. Most symptoms seem to have an autoimmune correlation. They keep finding more and more possible associations, but since it involves genetic prevalence and often a triggering episode, a lot still needs researching.

I bring this up because it seems that HLA B27 has been at the root of so many of my strange, seemingly unconnected maladies. I just have to wonder whether it could be associated with my fasciculations and cramping. As a matter of interest to others, that particular gene is reasonably rare, about 6% of the worldwide population, but gets more prevalent with northern lineages. Northern Europeans have the highest rates of having this particular gene.

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miep | @miep | Oct 6, 2023

I was diagnosed with BFS, twitching started after my second Pfizer corona shot, so I associate it with that, though no medical specialist will accept that.
I too have gene HLA B27 and also HLA B51 which is probably associated with my uveitis which started in 2015.

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rtresher1 | @rtresher1 | Oct 8, 2023
In reply to @californiazebra "Hi @rtresher1 First of all, kudos to you for being in such good health generally. I..." + (show)
@californiazebra

Hi @rtresher1
First of all, kudos to you for being in such good health generally. I don't read a lot of that on these message boards.

This message is not medical advice, just reason to have hope. Just reading your story, my gut reaction is that going off Crestor is related. Like many meds, I read that statins are a med you need to go off of slowly to avoid withdrawal symptoms. I've had withdrawal issues from going off different meds and they can be crazy and last for weeks or months. I also read that one of the issues going off statins can cause is peripheral neuropathy and symptoms of that include twitching and muscle cramps among others. You know the statins caused muscle cramps for you so it makes sense going off of it could impact muscles as well. Since withdrawal is a possibility, it seems there is hope that the fasciculations will resolve on their own. They are very annoying and only noticeable at rest as you have discovered. Good that you sought advice from a neurologist who believes it's BFS and harmless all except for driving you nuts.

I had fasciculations for years starting in my 20s due to my neuropathy then suddenly they stopped from about 40-55 years old. It was a mystery why until I went off atenolol, a beta-blocker for blood pressure. Within days, the fasciculations were back with a vengeance and turned into violent muscle jerks and cramps in my feet and calves within 5 minutes of resting. I was jumping out of my chair and bed all night. I had been on atenolol for 15 years. Aha! I started taking the atenolol again, the cramps stopped and facsiculations improved about 80% over time, but never completely went away again. Darn. Now one of my cancer meds has caused my blood pressure and heart rate to be dangerously low so I really need to be off atenolol as its piling on. I'm trying to wean off slowly this time. I cut my dose in half a week ago and already the fasciculations have really increased in my legs and now in both eyelids which really drives me nuts. No muscle jerks or cramps yet though. I'll do this dose for a month, then if still tolerable, I'll try cutting it in half again and then zero. Not sure I can completely go off, but both my heart rate and blood pressure have already gone up and are closer to low normal now so I'm hopeful I can at least stay on this lower dose for improved health. I really don't like meds. They are a bartering system of trading one issue for another. Sometimes it's a good trade, sometimes not.

Praying that your BFS issues are only temporary. 🙂 Oh caffeine and chocolate (which has some caffeine) will make all my neuro issues worse so maybe test cutting back on any caffeine just to see. Best of luck to you! Zebra

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Hi Zebra,

Thanks so much for your reply. I have been suspicious about the connection between stopping Crestor and my fasciculations. Do you have any sources or articles you can relate that support your comments about withdrawal issues? I would really be interested in reading them. They really suck. Some days better than others but I can't see any rhyme or reason in them. I had thought about taking Crestor again to see what might happen but don't think I will do that. You're right that all these medications, even the so called benign ones, carry major side effects with them and no two people react the same. Really appreciate your input and help. Cheers. RT

REPLY
1 reply
Zebra | @californiazebra | Oct 12, 2023
In reply to @rtresher1 "Hi Zebra, Thanks so much for your reply. I have been suspicious about the connection between..." + (show)
@rtresher1

Hi Zebra,

Thanks so much for your reply. I have been suspicious about the connection between stopping Crestor and my fasciculations. Do you have any sources or articles you can relate that support your comments about withdrawal issues? I would really be interested in reading them. They really suck. Some days better than others but I can't see any rhyme or reason in them. I had thought about taking Crestor again to see what might happen but don't think I will do that. You're right that all these medications, even the so called benign ones, carry major side effects with them and no two people react the same. Really appreciate your input and help. Cheers. RT

Jump to this post

Hi @rtresher1
Just seeing your reply. Naturally, since we read everything online now, I don't have a hard copy saved of what I read. I'll have to look into it and see if I can find what I read about going off statins slowly and withdrawal. If I can find it again, I'll let you know. We probably all do the same thing, query info then start reading and go down the rabbit hole -- click, click, click. 🙂

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marklane | @marklane | Oct 14, 2023

This is really interesting. I may have some insight. I very recently got very sick… my body almost completely shut down, hand’s completely locked up, my cognitive ability shut down, etc. It was really bad. This was approximately 4 weeks ago.

I’ve been to several specialists to run different tests. One of them being a hormone test. Come to find out my adrenals are shot and my cortisol is flatlined.

I’ve been desperate as I’ve also been having these same twitches for the last week and averaging about one hour of sleep per night.

After learning of my low cortisol levels, my research led me to find out that cortisol is the stress hormone that regulates histamine.

Naturally, if I don’t have any cortisol, I can’t combat the histamine.

But now at least I know what it is. I’m trying some Robitussin PM as an antihistamine as well as hopeful that it’ll knock me out.

But the plan going forward will be to get my adrenals and cortisol levels back up to par to where they can fight the extra histamine.

I hope this helps. Please consider getting your adrenals and cortisol levels checked out.

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monkeytime777 | @monkeytime777 | Oct 29, 2023
In reply to @twitchy "I’ve had continuous muscle nerve twitches for the last 4 1/2 years…. Walk 4 miles a..." + (show)
@twitchy

I’ve had continuous muscle nerve twitches for the last 4 1/2 years…. Walk 4 miles a day and do resistance training 3 times a week… they started randomly all over usually only one twitch and done but sometimes will twitch for a few seconds…. Never when I start moving always when I’m stationary sitting or laying down…. Never interferes with sleep but is constant and annoying…. Had mri etc…. Absolutely no muscle weakness or cramps…. Just nerve wracking twitches that people say just forget about it…. I’m glad there are people out there that are experiencing the same thing and understand the impact that it had

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Sorry I know this is an older post but did you have the twitches all over and sometimes in more than one place at the same time? That’s what I’ve been experiencing

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twitchy | @twitchy | Oct 29, 2023

Twitches in different places all over body…. Usually one twitch and done….. not at the same time….. example: a twitch in my elbow then 30 seconds later a twitch in my thigh not always in muscle groups just wherever my nerves are connected

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artt59 | @artt59 | Nov 16, 2023
In reply to @joannemm30809 "I agree. I have seen dozens of doctors from neurologist to endocrinologist to rheumatologist to cardiologist..." + (show)
@joannemm30809

I agree. I have seen dozens of doctors from neurologist to endocrinologist to rheumatologist to cardiologist to primary care doctors to internal medicine doctors and all of these doctors just shrug their shoulders and say it's either anxiety so go on antidepressants or it's benign fasciculation syndrome And there's nothing we can do about it and you just have to go home and live with it. I've never seen such nonchalant attitudes. And then all these doctors circle the wagons and get all their notes together and then they all just say it's anxiety and they totally ignore what the patient like myself is telling them. No this is beyond anxiety This has got every single part of my body short circuiting and times where my sensory perception I feel like I'm in another dimension like my body's shifted sensory-wise I can't explain it but I tell them it affects my vision my breathing my heart my extremities can go numb pins and needles sharp stabbing pains muscle twitching in every single part of my body 24/7 it never stops It affects my bowels or I can actually poop in my pants and some of these symptoms will rotate one symptom will disappear but then another new symptom will crop up or a symptom I had two years ago that disappeared has now returned. It's relentless. But these doctors in my opinion just do not give a damn. Maybe like so many people say doctors make money on people that are sick. Pharmaceutical companies make huge billions of dollars every year with all these different drugs that they push off on people and it makes the pharmaceutical companies billionaires so in my opinion I'm beginning to believe what a lot of other people have said that doctors are not in it for the most part to make you healthy because it would put them out of business. So we have tests after test after test which rakes in more money for the hospitals and they put us on all these different drugs for muscle twitching or muscle aches or for bowel problems or for heart rate problems or blood pressure problems all caused by this supposed benign fasciculation syndrome. There's nothing benign about any of this. But these doctors in my opinion just don't give a damn. I've told many people I believe that are health care system is collapsed there's something wrong with it and it's below third world country status. I just wish some of these Mayo Clinic doctors would step up to the microphone and start having press conferences start organizing for patient seminars throughout the state of Florida that we can attend. someone's got to give a damn from the medical community instead of sending us home and telling us we just need to learn to live with it We just need to deal with it We just need not to be so full of anxiety and all this will go away. I'm sick of it

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This has happened to me too after my third vaccine in January of 2022. I’ve been to 3 neurologists, switched my GP and run every blood test under the sun. I’ve been told it’s benign fasciculation syndrome and fibromyalgia. I have had some relief from the pins and needles with upping my vitamin D. Still get cramps in my feet behind my knees and pain under my arms. It just sucks.

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