Benign fasciculation syndrome (BFS)
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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Hi @pauleliaz, Welcome to Connect. Sorry to hear you have these dreadful condition. Kudos to you for reading through the entire discussion. Not sure there is a miracle cure but one is needed. I think it may be like some other conditions that are diagnosed by exclusion. I found this YouTube video that goes through the causes and treatments that might be helpful for those trying to find more information for BFS.
Stress has been identified as one of the possible causes. Have you looked into changes that might help decrease your stress?
Hello @crampedup and welcome to Mayo Clinic Connect. I noticed you posted a couple of times on the topic of benign fasciculation so wanted to bring both of your posts into an existing discussion on the topic which you can find here: https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/
Are you looking for a doctor to agree that prescription is suitable or is that a substance that is regulated so difficult to get?
There is a Facebook group called Neuro V Long-Haulers for people who have had adverse neurological reactions to the Covid vaccines. Many people in the group have fasciculations, tachycardia, and neuropathy. Because this is so new, some physicians are unenlightened and fall back on a diagnosis of "anxiety". There is increasing evidence for immune dysregulation in both long COVID and vaccine injuries. The immune dysregulation is known to allow dormant EBV to take off. I imagine the same thing happens with a new mono (EBV) infection. You need to see a neurologist and be tested for autonomic nerve dysfunction, which could explain the tachycardia. You might also purchase a watch type heart monitor to document the episodes more thoroughly in advance of your visits to doctors. I recommend joining the Facebook group.
My twitches started after my vaccine too (about a year ago). I’m not sure if this is a link, but the only thing I can attribute it to. I was just recently diagnosed with CFS. However, I haven’t really had any cramps- just twitching everywhere randomly.
Lately, the twitches have been getting worse and my left leg has just felt ‘off’. Praying it doesn’t get worse or was a misdiagnosis. I do believe that my anxiety is contributing to the worsening symptoms.
Welcome @eabbott, I'm sorry to hear that the muscle twitches have been getting worse. I do think anxiety can worsen symptoms but I'm not a doctor. Since you also mentioned you have Chronic Fatigue Syndrome (CFS), I thought you might find the following discussion helpful:
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments:
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/
Have you discussed the twitches getting worse with your doctor?
I had strong visible muscle spasms in the beginning and now have subtle fasciculations/twitching…. exercise makes it worse but I continue walking to take my mind off it; I pray one day it will go away and will never have any vaccine again ever… in the beginning I was researching what I have and that caused a lot of anxiety which doesn’t help… it’s 15 months since my second Pfizer vaccine and I am now trying to get on with a normal life. I have bought Cramp bark/magnesium supplements and will give that a try. Don’t want to take the sedative Clonazepam.
All the best..
Hi there,
Wondering if you think there's been any success with the acupuncture - it's something I've considered, but it's pretty far down the list.
Hast du es noch immer? Habe das selbe blitzartige Zucker wie elektrisch jede sekunden keiner weiss was es ist. Wird immer mehr. Es hat vor 2 jahren begonnen. An manchen Stellen permanent. Zu hoher Puls im stehen, Taube Stellen, kribbeln. Es ist wie folter
Has anyone here tried Sprint PNS (Peripheral Nerve Stimulation)? That's the next thing on my list.
@marvel61018 - There is a discussion on the stimular that you might want to read through...
-- SPR Peripheral Nerve Stimulator (SPRINT): https://connect.mayoclinic.org/discussion/spr-peripheral-nerve-stimulator-sprint/