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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@miep

Sorry to hear that; my journey started after the second Pfizer vaccine end May 2021 when I noticed twitching and spasms in my legs; since then I have had all the tests available and the outcome was BFS; after a 9 month wait I am now finally going to have a test for small fibre neuropathy (SFN) which will be next week and the whole day will be of tests….. the results will take 8 weeks. After that I will have closure knowing I have done all I can.
Tests so far were MRI, EMG, Doppler, various neurologists. I am so sick of the many medical visits since this happened. I have tried various drugs and they don’t help. I suppose I will just have to learn to live with it.
I wish you all the best…

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So, I just switched from Crestor (Rosuvastatin) to (Astorvastatin) Lipitor and we’ll see if that changes anything.

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@happybrindle

@tbarbotte just following up on your findings if you wish to share. I am experiencing very similar symptoms.

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Hello. As for many here, the examinations (EMG, mRI, complete blood test) did not reveal anything in particular. So I think you have to manage to detach yourself from these symptoms, accept them on a daily basis, without falling into the anxiety of the next day about what can potentially happen. I think we are all worried, it's natural, but let's already rule out any type of neurodegenerative disease because experience shows that everyone has had the same exams, and the diagnosis seems to agree for all.

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@tbarbotte

Hello. As for many here, the examinations (EMG, mRI, complete blood test) did not reveal anything in particular. So I think you have to manage to detach yourself from these symptoms, accept them on a daily basis, without falling into the anxiety of the next day about what can potentially happen. I think we are all worried, it's natural, but let's already rule out any type of neurodegenerative disease because experience shows that everyone has had the same exams, and the diagnosis seems to agree for all.

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Thanks @tbarbotte for the response. Did the Dr ever mention anything about what the internal vibrations were? I share the same symptoms along with the fasciculations. Just wondering if they prescribe any medicine. Thank you again.

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@happybrindle

Thanks @tbarbotte for the response. Did the Dr ever mention anything about what the internal vibrations were? I share the same symptoms along with the fasciculations. Just wondering if they prescribe any medicine. Thank you again.

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@happybrindle On the other hand no, no explanation gives on these internal vibrations... therefore no prescribed drugs. If you ever have anything new on your side, I am interested in any information.

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I appreciate the comments on this thread as it has helped me put into perspective what I've been going through.
Compared to many on this site, my symptoms are fairly mild but they are enough to sometimes disrupt my sleep and are generally an annoyance during the day. My research into the condition has led me to the following conclusions: the chances that fasciculations are an indication of a serious neurological condition such as ALS is extremely small, so small that it is not worth worrying about. There seems to be an almost infinite number of causes for it. I am exploring some of the possible causes relating to diet, vaccines, physical conditions such as sciatica (which I have had and can apparently affect nerves throughout the body, not just the legs and back), a thyroid imbalance, and a number of others. If I figure out what the cause of my fasciculations is I will be sure to post it here as it may help somebody. But I am also prepared for what many on this site have found: that there is no clear cause for the condition and you just have to do the best you can to live with it.

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When a condition is linked to stress because the doctor is not familiar with the symptoms, it reminds me of the time decades ago when women were diagnosed with hysteria for just about everything that was not understood at the time. Stress has taken it’s place. I’m not downplaying the role of stress as a cause for many conditions, but it bothers me that people like you and I and countless others who have benign fasciculation are given drugs like Xanax to control our symptoms. As far as I know there has been no research on BF so until the medical establishment directs funding towards the study of its causes, we are guinea pigs.

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@captainanxiety8

Went back to the Neurologist after the fasciculations(twitching) got worse and he did a nerve conduction study and EMG and both were clear/negative. He said what I have is benign, but I'm having a hard time accepting that. Not to mention the fact that this may never go away and it feels like someone flicking/poking me at different spots all around my body, with random flickering of my muscles around my arms and knees throughout the day. I asked about MS or Neuropathy and he said it's not those either. I'm at a loss and not sure if/how I can pursue a diagnosis. My regular doctor put me on Pregabalin and it's calmed the twitching down a lot, but it's still there and in places I've never had twitches before... I'm just a walking pile of benign conditions, geographic tongue, seborrheic dermatitis, petechiae, it seems I have the bad luck of collecting all these...

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Get vitamin B checked. May be low and that may be causing fasciculations.

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Question: With BFS, does anyone else experience twitching in the toes? I started similar things around a year ago, and it seems to have come with sleep myoclonus, but I also have involuntary movements of the fingers and toes, and it seems to be getting worse. Woke up a few times in the past week with a numb hand, which could just be my fat ass sleeping on it, but it's enough to startle me even more. Negative feedback loop. 🙁

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@falconhawaii

Question: With BFS, does anyone else experience twitching in the toes? I started similar things around a year ago, and it seems to have come with sleep myoclonus, but I also have involuntary movements of the fingers and toes, and it seems to be getting worse. Woke up a few times in the past week with a numb hand, which could just be my fat ass sleeping on it, but it's enough to startle me even more. Negative feedback loop. 🙁

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Hi @falconhawaii - There is another discussion that members have posted about twitching in the toes that might be helpful.

-- Toe twitching/fasciculations?!:
https://connect.mayoclinic.org/discussion/toe-twitchingfasciculations/

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@falconhawaii

Question: With BFS, does anyone else experience twitching in the toes? I started similar things around a year ago, and it seems to have come with sleep myoclonus, but I also have involuntary movements of the fingers and toes, and it seems to be getting worse. Woke up a few times in the past week with a numb hand, which could just be my fat ass sleeping on it, but it's enough to startle me even more. Negative feedback loop. 🙁

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Yes, for a number of weeks I was having twitching in the toes when at rest, mainly when trying to sleep. I started wearing socks to bed and it seemed to help for some reason. I also frequently get the numbness in fingers but I attribute this to poor circulation. For what it is worth, I started taking calcium supplements several weeks ago and most of the my BFS symptoms have subsided, though I still get twitching and spasms almost every day. I noticed in my last blood test that my calcium levels were on the low side. Hope this helps.

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