Benign fasciculation syndrome (BFS)

Posted by captainanxiety8 @captainanxiety8, Mar 10, 2019

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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benjiron23 | @benjiron23 | Jun 8, 2023

In reply to @benjiron23 "I’m a 29 year old male who has had continuous twitching for roughly two years now...." + (show)

@partialperson I am going to try the carbamazepine and see how it goes and will let you know if I experience any type of side effects. @bramhamants i don’t experience any type of muscular pain or soreness. I do experience vertigo issues and numbness from time to time but my neurologist said that’s more than likely from the stress / anxiety. @dhansen78 unfortunately I’m in Georgia, so unless you have ALS or are entering the ending stages of cancer there’s no way you’ll be eligible for medical marijuana. I will say I was a chronic user recreationally in college and I never experienced anxiety or twitching during those times. I’m almost tempted to look into anti anxiety medication like klonopin. Has anybody here had experience with benzodiazepine medications?

benjiron23 | @benjiron23 | Jun 8, 2023

In reply to @benjiron23 "I’m a 29 year old male who has had continuous twitching for roughly two years now...." + (show)

@dhansen78 my apologies I see now your comment was in response to somebody else.

dhansen78 | @dhansen78 | Jun 8, 2023

In reply to @benjiron23 "@dhansen78 my apologies I see now your comment was in response to somebody else." + (show)

My comment may be for anyone who is not having any luck with "conventional" methods. I feel medical marijuana is worth a try for anyone. I believe it has its medical purposes.

mbdave | @mbdave | Jun 8, 2023

In reply to @benjiron23 "I’m a 29 year old male who has had continuous twitching for roughly two years now...." + (show)

I personally don't think marijuana helps with BFS. It can almost make things worse as it can cause paranoia. I tried it and it didn't seem to make my symptoms better or worse.

mbdave | @mbdave | Jun 8, 2023

Has anyone started an SSRI post BFS diagnosis? Did that help?

And yes, BFS is annoying and causes anxiety. I'm better at managing my anxiety these days, but generally speaking I feel happy, confident and blessed.

twitchy | @twitchy | Jun 9, 2023

In reply to @benjiron23 "I’m a 29 year old male who has had continuous twitching for roughly two years now...." + (show)

I’ve had BFS for a little under 5 years now…… constant twitching all over though mostly one twitch and done…. It doesn’t affect my sleep. I exercise everyday because when I exercise for those two hours a day I feel no twitching…… anxiety triggers the twitching as does caffeine for me…. But irregardless I twitch all day long when I’m not moving….. I would never suggest medication because the side effects are probably worse than the condition….. meditation may help…. But the simple answer that people give is just live with it of course doesn’t work…. It never worked for me I have just had to accept this condition and work around it

mbdave | @mbdave | Jun 9, 2023

In reply to @benjiron23 "I’m a 29 year old male who has had continuous twitching for roughly two years now...." + (show)

I've asked this on a couple forums now, but has anyone been prescribed / taken an SSRI post BFS diagnosis and if so how did that impact you?

I connected with the chair of neurology at a major hospital group who also has BFS and his opinion was that medication side effects being worse than the disease itself. However, that's likely all a personal decision.

carmelbythesea | @carmelbythesea | Jun 9, 2023

In reply to @dhansen78 "I am wondering if medical marijuana would help you in this situation. It might be worth..." + (show)

Marijuana is poison. Don't touch it.

hass11 | @hass11 | Jun 25, 2023

Man the way you describe this is very similar to me. I started about a year ago. My kids were sick about a week or so before this then passed the sickness to the other one, I however never got sick. Went for a run, came home and was fatigued beyond what I have ever felt. Muscles twitching randomly anywhere, high muscle tension randomly, stinging pain in random areas of my body, burning sensations in at times my dorsal forearms, face. Random vibration felling's in various muscles groups that would come and go. Thought I was dying. Went to the ER. Was covid negative and all tests normal. I had definitely gone through trauma recently as well about two years before (my mom passed from ALS). My hands felt weak and more jittery than before which then would get better and then somewhere else in my body will get that feeling. All I could think was I had a genetic link and had ALS. Im the youngest in a big family and none of my siblings had anything, even my mom never twitched at all during her progression. Saw neuro, did their scans, nothing showed up. Had very low Vit D and testosterone. started supplementing. Did an EMG. Due to my fatigue he did a test for Myasthenia gravis. Passed all tests thankfully. He thought It was a viral cause and to give it time. I spent many horrible anxiety filled nights after this researching, reading forums, super focused on my symptoms, hallmarks of health anxiety that I have. My highest Anxiety had the worst symptoms, but my symptoms were causing my anxiety. Horrible loop I slowly got better without even realizing I did. Months passed and the twitching went down significantly but never left. Happened very gradually. About 70-80%. Burning was gone, severity of twitching when it did happen was significantly less, no more vibrations, no more stinging pain. Never back to 100%, but started to be able to do more at the gym. Happened so gradually I thought "Maybe this was always in my head"? I am a chronic worrier afterall and always in my head. fast forward 10 months after. Im outside doing gardening, go to the gym, and BAM, a few days later im exactly in the same spot I was at my worst, with ALL the symptoms in the exact way they were. Crazy. I did have horrible brain fog. for a few days couldn't concentrate on anything, my anxiety filled my head again and I went back down the rabbit hole. Spent countless hours searching the web again for answers Until it hit me. Wouldn't you know it, both my kids were sick again during my second bout, I was not. Currently am slowly improving the second time like before. Its weird how similar the symptoms are between bouts. I remember lifting a weight at the gym and feeling horrible wrist pain, searched up carpal tunnel as a result but that got better without me realizing. When it happened again I felt that EXACT pain lifting a weight again for the first time today. Unsure if this is post viral Fatigue, BFS, Fibromyalgia, or anything else, but man its been tough. Would like an update on where your at now? you doing good? I know its years later, but this post hits too close to home me not to comment on it. Have a great day!

hass11 | @hass11 | Jun 25, 2023

In reply to @harryfrenchuk "@captainanxiety8 You are describing my symptoms to a T. Mine started about a year and a..." + (show)

@harryfrenchuk

@captainanxiety8 You are describing my symptoms to a T. Mine started about a year and a half or two years ago. I kept having strange sensations all over my body and twitching from the top of my head on the scalp all the way down to my feet including pecs, abs, shoulders, all over back including lats, eyelids, facial muscles, neck, glutes, thighs, calves and the inside of my thighs just below my privates. I also get aches and slight burning sensations all over my body. The pain and sensation is never severe but it's there. I describe the pain as being similar to an old injury so it's dull. I often get pains in my knuckles and the various joints of my hands and feet. All of the symptoms come and go. I can have weeks of hardly any symptoms then I get a flare up which is usually accompanied by insomnia or sleep disruption. I sometimes get itchy skin too which is a nuisance when I am trying to sleep. I noticed that when my skin itches I tend to sweat a lot overnight in bed but this doesn't happen all the time.
I had an MRI scan on my brain and spine and both were normal. I had countless blood tests which all came back normal. There were no antibodies for Lupus or Isaacs Syndrome. No deficiencies or anything abnormal. I am waiting to get an EMG (Electromyography) test.
The Neurologist conducted the same tests you described your doctor did on you and all of that was normal too.
She said I might have Isaacs Syndrome (but this was before the blood tests which showed no antibodies which are found in around 50% of people who have Isaacs Syndrome) or I might have BFS.
I think it's probably BFS because it is very common and I have been under a lot of stress related to full time work and full time university commitments. Isaacs syndrome is also less likely because it is extremely rare. So far only around 200 people are known to have it worldwide.
Despite the annoying symptoms (the insomnia and anxiety being the worst) I feel totally fine. I haven't lost muscle mass or strength and my coordination is normal. I go to the gym regularly where I lift heavy weights and do intense cardio.
I really think it's BFS which is not fatal, progressive or serious in any way. It sounds like you have the same so I wouldn't worry too much about it because stress and anxiety make it worse. I hope I have helped putting your mind at easy. Stay healthy. All the best. Harry (From Glasgow, UK)

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Word for word is exactly what I’m going through. It’s been a horrible experience. If you have any updates please let me know. How long have you had this? Going through a second flare right now. It’s been rough.