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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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@lilypaws
This doesn’t help you out any but it is a little bit of information.
My dad had paraesthesia As a result of being paralyzed from the neck down. You can have all sorts of different effects but his was a burning sensation. It’s not uncommon in paraplegics and quadriplegics.
Thank you for the link John.
Take care,
Jake
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1 ReactionThis comment made me laugh (the last one) to the extent that I created the account just to reply you you.
I’m 38 and for the last 15 years I’ve been “collecting” these conditions that you’re mentioning. All look autoimmune and all are “hopefully” benign. When I was a boy I had (and still have keratosis pillaris, aka chicken skin), Geographic tongue 12y ago (at the time mistaken for nasty fungal infections), alopecia areata (missing patches on the beard), I could start from my scalp and move all the way to my feet and find one of these weird rare conditions on any body part. And now what drove me to this forum is what looks like BFS. 4 months in, same symptoms as yours. Getting a full check up on Wednesday. But I kind of know it’s gonna go down to anxiety and stress. Actually the combination of all the factors that someone mentioned here (which aggravates anxiety) caffeine, Alcohol, bad sleep, and I’ve been battling all of this with some really heavy CrossFit and I guess at some point the body just said, can’t take this anymore...
Hope you find the way to dial down on whatever stressors you have. I’m thinking of committing to meditation and like I’ve done for training, be super disciplined at daily practice, plus cut out all the shit I swallow. I’ve read across many forums that prognosis (if it’s BFS) is good to great and that people have recovered as soon as they have been able to (really) change their lifestyle. It’ll be hard for me. But Beats twitching the whole bloody day.
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1 ReactionHello @borkoksg, Welcome to Connect and especially for joining just so that you could reply with some helpful information and a suggestion. It helps to know there are others out there that are collectors of many different autoimmune conditions. You mentioned you are thinking of committing to meditation. There are a few other discussions on Connect you may be interested in reading to learn what others have shared. Also there is an excellent Mayo Clinic Newsfeed article on practicing mindfulness you may be interested in reading.
Meditation For Anxiety: https://connect.mayoclinic.org/discussion/meditation-for-anxiety/
Do you meditate? And does it help?: https://connect.mayoclinic.org/discussion/do-you-meditate-and-does-it-help/
Practicing Mindfulness: 15 Tips on Meditation Practice: https://connect.mayoclinic.org/page/mindfulness-in-health/newsfeed-post/15-practical-tips-on-mindfulness-meditation/
What type of meditation have you tried or what helps you the most?
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3 ReactionsThank you John so much. I will read through and definitely commit to regular practice of mindfulness and meditation. I wish it can happen over night but same way when I started my journey on losing 10kg and I was barely able to do 2 pull ups, it requires commitment and dedication and really wanting to change the lifestyle we lead. Everything in life works like this, small steps until we get better.
I have a corporate job and young kids at home, stressors and worries are all over the place, and Covid lockdown has done it’s fair share of pressure and extra anxiety added.
Appreciate you’re response John, I’m, very happy and thankful to see a volunteer mentor observing the threads and helping out people. Very kind. Thank you!
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1 ReactionHi,
I was diagnosed with BFS over 3 years ago. I had EMG and nerve conduction studies ( done at Mayo in 2017) I did try several medications Tegretol and Lyrica but did not like the side-effects. I have been seen yearly by neurologist at University of Michigan who reassures me that symptoms are still not concerning for progressive neurological disease and I have felt reassured by this and just focused on living my life and ignoring the twitches and cramps. I had frequent twitches that would last for seconds to minutes, sometimes in one muscle for several days ( but always coming and going.) Recently I have had one twitch in my left forearm that has been constant for over 10 days, never stopping, it is affecting my ability to type and is very annoying. I am feeling very worried about this and that it might be a sign of a non-benign process. Has anyone experienced a constant one muscle fasciculation that lasted over a week? My anxiety is getting the better of me so any suggestions for how to deal with that would be appreciated. I do have a neurology follow up appointment in October. Thank you.
Hi @etana and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussin about benign fasciculation syndrome (BFS). I did this so that you can connect with other BFS members like @captainanxiety8 @jenniferhunter @lizaa @didi09 @tutina @sonsowy @richman54660 @borkoksg and others. Click VIEW & REPLY to read through past comments.
Etana, having a persistent twitching lasting 10 days must be worrying. Do you have additional symptoms besides the twitching that cause concern?
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1 ReactionThank you for responding and moving my question. I was not sure how to post in the discussion about benign fasciculation syndrome. I have cramping and pain in my arms and hands, but I have had this in various muscles for years- I was diagnosed with cramp fasciculation syndrome and muscle use does seem to make symptoms worse. My fear is of a progressive neurological condition like ALS. Thank you.
Hi didi09. I was wondering if you have ever had one muscle twitch constantly? Like you for the last three years I have had waxing and waning symptoms ( although never completely gone) and I know it is likely that this new symptom of a constant twitch in my left forearm is not consistent with a progressive neurological disease, but my anxiety is very high. I am trying to focus on stress reduction, sleep and exercise. Do you have any other strategies that have helped you?
Thanks.
Hello! I wanted to chime in as a fellow BSFer... I was diagnosed in 2018 and am also trying to figure it all out. It seems it manifests itself so differently in each of us. I deal with minor twitching and parentheses on top of feet. The hardest symptom for me are the any bite type itches. My symptoms can be from undetectable to keep me up at night. I have never attempted meds, but I did want to share a piece of info that may be helpful. I have several nurse friends who researched the condition and found somewhere that Benadryl may be in part the cause of my condition. I took low dose of Benadryl for 13 yrs to manage allergies and help with sleep. Apparently it contains a particular ingredient that may have contributed to the disconnect of synapses in the brain that connect to the nerves. Feel free to check it out but thought it was important to share.
God Bless and keep going!
@smorey Welcome to Mayo Clinic Connect. It's positive that you do not feel the need to seek medications for your condition at this time. I read that stress can cause flares up for BFS. May I ask if you have noticed experiencing flares up during times of stress?
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