Benign fasciculation syndrome (BFS)

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...

This 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.

Hello @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?

Hi,
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?

Hey there @captainanxiety8 , I just wanted to let you know I went through the same thing about 10 years ago. I’m 37 now. It scared me so much that after getting several opinions of it being benign, I went to the Mayo Clinic from Canada to find out what was happening. They felt it was benign and stress related. I always find that hard to believe, however stress does make it worse. It took just over a year of pretty aggressive twitching for it to finally subside. Over the years I’ve had minor relapses and I’m always trying to guess the triggers. Stress and illness tend to bring it on. Caffeine and alcohol make it worse. Gluten intolerance is another big one for me. It takes months to subside and tends to go away without my noticing. I also get pins and needles and nerve pain with it as well. Currently I’m having another relapse after years of nothing. I was feeling under the weather for the week and it just hit me again. It still gives me major anxiety when it occurs. Even though I’ve been down this road I always fear it’s something worse. I Have to remind myself that it does subside eventually, even though it’s hard to believe. Your not alone. I think the best remedies is trying to get more sleep, less stress, less anxiety, gentle exercise (walking) and a healthy diet. It’s a tricky one because for me the condition itself is the cause of my anxiety and that’s just makes the symptoms worse. I hope your doing a little better now. I truly feel with this one, time heals and relapses happen. I also feel my initial onset of symptoms came after a bad virus.

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!