Benign fasciculation syndrome (BFS)

Update: So I finally got to see my allergist. I have histamine intolerance (HIT) which has led to the dermatographia. This may be part and parcel of perimenopause but there is no definitive test to prove that (HIT symptoms mirror many peri symptoms). The twitching is caused by the high histamine levels. I am now on higher doses of Allegra in an attempt to calm everything down. She did not talk about a low histamine diet. She did say this can go on for years, which I figure, especially if it's related to reaching menopause. Just wanted to share.

Three generation concern. Have Fasciculations almost 24/7. Cramping is at least daily/nightly. Often causing me to awake and most nights jump out of bed to stretch out muscle, those are very painful. Unable to walk fast and sometimes stumble while walking upstairs.
Electrolytes are “normal”; condition has be diagnosed by 2 private practice Neurologists and one in the Veterans’s Administration.
Medications tried:
Valium, works well even at 2.5mg, but no one will prescribe.
Muscle relaxing meds, one did not work, another caused too much sensorium problems, hydroxychloroquine worked well but know one will prescribe.
Need to find a Cure, Cause, and or treatment. This “Benign” disorder is disrupting sleep, exercise and overall calmness, and ability to hold a steady hand while taking notes and weighting in general.

Welcome @crampedup, I know it has to be frustrating as well as painful trying to find something that helps the fasciculations and cramping. You will notice that we moved your post to an existing discussion on the same topic so that you can connect with members who also have BFS. If you click the link it will take you to the top of the discussion where you can learn what others have shared --- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

@kennapie, @willard74, @windyshores, @carlakay72 and @pathfinder2263 may be able to share more about their experience with you. While we wait for other members to share with you, here is some information that lists some lifestyle changes that may be able to help some with the symptoms.
— Benign fasciculation syndrome: What causes muscle fasciculations?:
https://www.medicalnewstoday.com/articles/320388

Do you think stress or anxiety may be playing a part in your BFS symptoms?

I developed peripheral neuropathy after the Pfizer vaccine. My symptoms include muscle fasciculations and spasms (in the beginning). The first medication I received was clonazepam, but I couldn't tolerate it. Fortunately, I eventually found the Neuro V Long-Haulers Facebook group. There are many members suffering from BFS associated with the Covid vaccines. There is a Danish physician who is helping us. His recommendations include a dietary supplement called palmitoylethanolamide (PEA) to reduce neuroinflammation. It is helping my nerve pain and fatigue. It might help with BFS. I recommend joining that group.

Sorry you have also been affected by the vaccine too and have BFS; I am also a member of that group. I will look into PEA, stay strong and take care.

I found someone that has a similar story. My BFS has been going on and off for 17 years. I am in a flare up that has now lasted 10 months. Only thing that they discovered recently was Neuropathy in my feet. Every time I get a flare up of BFS my feet hurt (achy/burning) when I stand or walk. The twitching is everywhere and I wake up stiff as can be. I too worry about it and if it does not go away. Taken Gabapentin, but have not seen much success with it.

I’m retired with little stress. Cramping is nightly some nights it will get me out of bed 5 or more times. The worst night I was up out of bed stretching 1 mor time than hours trying to sleep! Thanks for the group change.

It is not Benign! Cramping keeps me from running in, exercising, and SLEEPING.
Has been a problem for 28 years. NO ONE has been able to help. 3 Neurologists, 1 Interneist, 3 VA PHYSICIANS. The only time I have received any significant release is with muscle relaxers. They have the side effect of snowing my sensorium - no good. However during COVID I had a very difficult time. Was exposed to a lot of virus at once while helping a friend clean a public gaming carpet. After 5 days of of symptoms and half a brain later I received treatment with hydroxachloraquine. This drug works essentially due to the Quinine - a muscle relaxer! My fasciculations AND my cramps. Now try to find someone to prescribe it!!!

Left out - cramps and fasciculations stopped! SO NICE!!!

I'm 23 (male) and my muscles have been twitching lighlty for a few years but barely compared to what they've been doing recently.
Some fasciculations woke me up 6 months ago for a night but I didn't look into it much, it was after my last covid vaccine dose.
In may, 2 months ago, I got very bad symptoms from Mononucleosis, my neck swelled up to twice the size and I was in bed for over a month and my whole leg hurt immensely. My doctor said this leg pain was 'neuropathy'.
In the past month, I've been having arrhythmia, tachycardia and more fasciculations then in my entire life combined. My arms have also started feeling the same neuropathy as my leg 2 months ago. Parts of my hand also go numb/ have a tingling feeling from time to time. My girlfriend just tested positive for covid yesterday so this might just flare up to a whole new level. Anyway it's 6am and my leg hasn't let me sleep again. At least it made me read this entire thread. My doctor said it was all due to stress, which I've heard before because I am quite a stressed person, but it feels like handing me Xanax and letting me handle that isn't the way.
I'll look into some of the diets and supplements people have recommended here.
Hope you all get better, I know this isn't fun.
If I find a miracle cure I'll report back.