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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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Amazed to see how far this thread went. I guess a lot of people have benign fasciculation syndrome, despite doctors and medical journals saying it's extremely rare. Not so rare when you have it I guess!
I'm still suffering from BFS, it never went away. I've seen a neuro several times and to no avail. The only thing that seems to alleviate it a bit is to take melatonin before bed, along with 200mg of Magnesium twice a day(after breakfast and before bed). If I get a hotspot, where a specific area starts twitching violently(sometimes strong enough to make it impossible to use my hand or arm), I'll take clonazepam. But I don't take it all the time, only when I need it, and it doesn't work if I take it during the day, it only works if I take it before bed(along with the melatonin and magnesium).
Hi everyone. This thread has been incredibly helpful. I'm 41 and have had BFS for about 6 months in my shoulder, in which I also have osteoarthritis likely requiring a complete replacement (consult in August at Mayo!). As with previous commenters, treatments so far for me have been pretty hit or miss, mostly miss. These include differing amounts and combinations of gabapentin and carbamazepine, both of which make me completely exhausted, including days where it's difficult to work. While I wait for Mayo, I'm unable to see a local neurologist, meaning it's up to me and my PCP to determine next steps. On here I've seen a few other treatments, these include:
Pregbalin (anticonvulsant). Is this similar to gabapentin and carbamazepine?
Cymbalta (an antidepressant in the SNRI category) I've mostly ruled this out, due to previous side effects with SSRIs. Has anyone had success with this, though?
Nortryptiline - a tricyclic antidepressant. I've taken trazodone for other stuff - is this similar?
Ropinirole - a parkinson's drug - no idea about this one. Experiences? Does this one knock you out, too?
Nupro - Not sure about this one - looks like a supplement? More info would be great.
Thanks all!
Hello @marvel61018, Welcome to Connect. I have no experience with these drugs but can share a few references with you while we wait for other members with first hand knowledge to provide thoughts or experience with you.
-- (2005) Pregabalin: new drug. Very similar to gabapentin: https://pubmed.ncbi.nlm.nih.gov/16397976/
-- Cymbalta - Duloxetine (Oral Route) Side Effects: https://www.mayoclinic.org/drugs-supplements/duloxetine-oral-route/side-effects/drg-20067247
-- EFFICACY AND SAFETY OF TRAZODONE VS. NORTRIPTYLINE AMONG MIDDLE-AGED PATIENTS WITH MAJOR DEPRESSION: https://www.sid.ir/en/journal/ViewPaper.aspx?id=34173
-- Ropinirole: https://medlineplus.gov/druginfo/meds/a698013.html
-- GSK to discontinue RLS treatment ropinirole, maintain extended release tablets: https://aasm.org/gsk-discontinue-rls-treatment-ropinirole/
-- Neupro Patch, Transdermal 24 Hours: https://www.webmd.com/drugs/2/drug-148554/neupro-transdermal/details
Do you mind sharing what you were searching for when you found Connect?
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4 ReactionsThis is incredibly helpful information. Thank you so much for taking the time to provide these resources, @johnbishop. I googled something like "cramp fasciculation syndrome treatment" and got here from a similar thread. Thanks!
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3 Reactions@marvel61018 - Do you have any questions prepared for your Mayo neurologist appointment that you would like to ask and get answers? There is a site with some great information on planning your visit and even has some tips and cards you can print to take with you - https://patientrevolution.org/visit-tools
I wonder if @greeneyedenergy, @londonwc1, @richman54660, and @wendycad might also have some suggestions for questions to ask to help prepare for your upcoming appointment.
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2 ReactionsI've had BFS for over 2 years. It's a sort of curse. The only treatment that seems to work for me is to take 200mg of Magnesium, 3-5mg of Melatonin, and 0.25mg of Clonazepam before bed. If I get lucky and get a full, uninterrupted night of sleep, then the following day I'll be somewhat exhausted but also barely any fasciculations. There is no cure for it, and since it doesn't kill you, the medical industry doesn't have even the most remote interest in looking for a cure. So it's something we have to find a way to deal with and live with. There are plenty of snake oil treatments out there, so you can roll the dice on those, but likely best route is to eat healthy, get into shape, and get a lot of sunlight.
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1 Reactioni am 68 years old and i have had this my entire life but was diagnosed at MAYO 10 years ago. Tramadol helps with the flu pain; Carbatrol is a critical medicine; my doctor just added gabapentin to help with arm pain and to help with sleeping; and i take duloxentine to help with the itchy leg pain. I am very comfortable and live a normal life running a tax practice.
Hello @chrisfeder, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience and what helps you with BFS.
Do you mind sharing what you were searching for when you found Connect?
Have you found anything that would relieve the fasciculations?
I have a lot of muscle cramping and twitching. I have a paraneoplastic autoimmune antibody of VGKC. The voltage-gated potassium channels in your body are responsible for carrying the signals tellibg your muscles what to do. Having a vitamin-D and zinc deficiency will cause some problems also. As long as you have had a complete blood workup and everything is within normal limits then i wouldn't worry and i hope the meds work for you. I know how awful and frustrating it is.