Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Hello @xaviersymons and welcome to Mayo Clinic Connect. It is great to have you join to seek out and support other members who are also living with BFS. What you mention about treating viruses is interesting.
Have you done some research in this space?
-
Like -
Helpful -
Hug
1 ReactionI am also new to this group and was amazed at the amount of people, who suffer from this! This is new for me since February and I feel like my BFS is a result of the 3rd Moderna vaccine. I’ve been tested, poked, prodded and shocked (EMG), MRI from Brain to Lumbar spine, DNA complete genome test and ION micro nutrient tested. I’ve had zoom calls with the top neurologist in Tel Aviv and the Clevelend Clinic. Upon studying my full reports, they found nothing. I should be happy I suppose, that the bad diseases are ruled out, but this isn’t pleasant either! I’ve tweaked my supplements ( NAC, Mg, CoQ10, Omega 3, Glutathione, B12, Turmeric, Nicotinamide, Selenium, Iodine) 10 times, changed my BP meds and got off of the low dose of Nortryiptyline, I was taking for migraines. Nothing helps and I feel like Benadryl and melatonin make it worse. I cannot stop my Crestor as I have a stent in my LAD. Not sure if Crestor could be the culprit. Other generic Rosuvastatins caused muscle tremors initially, until I started taking Crestor. But Crestor is also Rosuvastatin, I don’t know. I would love to have one night’s sleep without waking from this. My neurologist prescribed Gabapentin, but that made it worse and the thought of trying Lyrica just scares me. I drink 2 liters of H2O daily and take probiotics, electrolytes plus extra 1000mg combo magnesium supplements. I eat healthy and watch my diet carefully. Does anyone have any other suggestions?
Hi tbarbotte. I have very similar issues. What your neurologist determine? Are you still having the vibrations in your head? I have them while sleeping and then they wake me up. I have no stop fasciculations in calves and feet and then random all over.
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…
Good luck! I’m so mad that I got the 3rd shot! I didn’t want it in the first place and my husband talked me into it, because he got covid in January. I will continue to search for answers and will post when I find something that works……
I have suffered with my body tremors for years and they can never find much with me either. It takes a toll on the mental health. It is truly frustrating that doctors don’t seem to crave enough knowledge to figure out what the heck is happening to people.
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
-
Like -
Helpful -
Hug
2 ReactionsI’m so sorry this has upset you so much. I have frustrating fasciculations at bedtime in the muscles located where my head joins my neck. I had minimally invasive neck surgery 15 Yrs ago - no muscles were cut but they were stretched and some nerves were minimally damaged. The dr said fasciculations are often due to some nerve damage. You did not mention having any nerve damage or surgeries. I have read in different reputable sources that the supplement called Skullcap calms anxiety, tremors and restless legs. It has been used for a very long time and has a proven safety record but I would still let ur dr know before trying it to be sure it doesn’t conflict with any meds u are on. I am going to try it. You can read more about it on Google.
@tbarbotte just following up on your findings if you wish to share. I am experiencing very similar symptoms.
Sorry to hear about all your struggles. I also have the twitching but I’m also having it in my tongue, shoulders, calves. Had EMG MRI and tested good. All happened after Covid. Had my first shot and started showing symptoms. Hopefully it doesn’t progress into anything worse but it’s certainly Neurological.