Benign fasciculation syndrome (BFS)

Well, good news is I am trying Lyrica and it's making things better, much less twitching, although the pain is sort of still there. So there is a little relief.

Hello, @captainanxiety8 - wondering how things are going with the pregabalin (Lyrica) you were taking for your twitching and pain symptoms?

The Lyrica helped a bit but the twitching is still there. Went for another workup and Thyroid came back show slightly low TSH(0.44) and slightly high T4 Free(19.5), but doctor thinks it's still somewhat normal. TSH was 0.5 a month ago so not sure if it's related. Doc said for a man my age, TSH should be at least 1.0 or a bit hight and T4 Free should be around 12-14 so my numbers are slightly odd. Tried sleeping pills last week and managed to get a few full nights of sleep that made me feel a lot better.

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.

Thank you! This really helps to know that I'm not alone. You're right that the stress makes it worse, but the fact that it happens makes me stressed, so it's a bad cycle. I'll definitely take your advice, I'm trying to change my lifestyle to eat healthier, go jogging, and stop drinking entirely(I'm a social drinker but never too much). I keep wishing there was some obvious clue that could lead to a clear diagnosis and possible cure for whatever it is, but I guess I have to accept that it will remain a mystery.

Well, I tried a lot of things, various vitamins and diet changes, and while I started feeling better, the pain and twitching never fully went away. So I went one more time to the doctor and asked for a B12 test. I read a few anecdotes online about B12 causing neurologic issues and how you can have a normal blood test and still be deficient. The last few doctors ran blood tests, not B12 tests, and those always came back normal so they insisted I don't need a B12 test because those other tests would have shown something. Well, B12 test came back at 235, which my doctor said was still low normal so didn't think anything of it. I went to the pharmacy, bought a bottle of B12 1,000mcg and started taking it once every morning. It's been almost two weeks now and my symptoms are about 80% better. I barely notice the twitching, it happens only a few times during the day now instead of all the time, and the pain is gone from my hands and legs.

Not sure what to do now, whether this is actually it or not, but it has made a difference for sure. Seems B12 ranges differ a lot from lab to lab, but I'm assuming I'm on the low end and near enough to be experiencing some odd sensations like what I've been dealing with.

@captainanxiety8 You might want to consult a functional medicine doctor about what B12 levels are best. Often their opinions on what prevents disease is different from a conventional doctor. A lot of test results are interpreted as being average of the entire population instead of optimal for health. I think you are on the right track and your experiment showed you what your body needs. You also need to know how much is too much, because an overdose can cause problems too. Low / normal is the low range of an average of the population, but if those people are also in the low range of optimal, it skews the statistics. The functional medicine doctor looks at how things are used in body chemistry, and how that might limit the function if there is a shortage. Here is a provider finder for the Academy of Environmental Medicine. https://www.aaemonline.org/find.php

It is a response to a viral infection, although little has been written about a viral cause of BFS. Many people have herpes virus and may not even know it; however, the virus can access your nervous system through the olfactory nerve or trigeminal nerve. This happened to me in September 2019, and I am still trying to get appropriate treatment (intravenous acyclovir). Oral acyclovir has very limited efficacy for treating herpes virus in the CNS, but I have yet to find any case study of it being used to treat virally induced BFS. Intravenous acyclovir is used to treat herpes encephalitis, but I believe it should be tried for treating BFS, if a viral cause is suspected. It would be an excellent case study, and invaluable to those enduring BFS.

That's an interesting hypothesis. I haven't been tested for herpes for a long time so maybe I should try that. It's been almost a year and a half of twitching, it's basically a curse. I've started keeping a health journal to see if I can find any patterns. I've seen a few different neurologists now, each one gave me a different benzo, tried Pregabalin, Gabapentin, and Clonazepam, all of which made the fasciculations worse. The only things that improved it a bit was when I got back onto my hypertension meds, Exforge, and the twitching reduced a lot. I've also reduced dairy and eliminated caffeine from my diet which also helped a little.

It's so frustrating because there's no one big clue that helps any of the doctors make a decision about what to do. Everything in my medical reports are not strong enough to support any lead. For example, I've had numerous blood tests, and every other time I go, my phosphorous is low. Over the past year since this started, my bilirubin has increased from low to elevated, and my CRP is elevated now. The only other thing are a few benign cysts on my kidneys, and one small cyst which I need to follow up on. If I dig into any of that, none of it leads to anything that would explain the twitching. Sigh...

My son is 20 years old and about 3 months ago, he starting having random headaches and twitches all around his body all day long.
He got a CT scan and an MRI of his brain and they both were fine. His headaches have stopped but his twitches continue. His twitches occur on his shoulders, arms, legs, knees, stomach, and, chest, they last for a few seconds and stop. He does not smoke, does not drink (alcohol or coffee) and does not seem to be stressed; however, he has been in quarantine since March.
He has many blood tests done, also his neurologist checked his strength, did a nerve conduction study and EMG and both were negative. After visiting different doctors, about 2 weeks ago, he was finally diagnosed with BFS.
His muscle on his left calf feels a little different (as if the muscle were tearing), he doesn’t feel any weakness and had some pain about 3 weeks ago, however, his pain has subsided. He got an ultra sound and an X ray of his leg and they were both fine. He is scheduled to have and MRI of his left next week.
His regular doctor recommended him to take vitamin D, magnesium and vitamin B12. He has been doing all that but nothing has changed.
To make it even worse, my younger son (17 years old) started having twitches all around his body about 3 weeks ago. He already got some blood work done and is scheduled to see a neurologist in 2 weeks.
I know the world situation with the Covid 19 (the quarantine, the confinement, the uncertainty of the virus) can make anyone anxious and can cause anxiety and stress to anyone, which I know could be a cause of these symptoms.
It is very bizarre to me that they have both developed the twitches. I don’t know what to do and would like to get an explanation!
As a mother, I am very concerned as my sons are very young.