Benign Cramp Fasciculation Syndrome

Hello, this is my fist time posting. My neurologist just recently told me that I most likely have Benign cramp fasciculation syndrome. He is waiting for some blood work to make sure it isn't something else. I've noticed that whenever I look it up, all I find is cramp fasciculation syndrome. Is there a difference between Benign cramp fasciculation syndrome and Cramp fasciculation syndrome?

Have u tried putting Magnesium Gel on the area of fasciculations? It sure stops mine!

I’m a 67 y/o Aussie male who has had CFS all my life. Started mainly in feet, toes, hands & fingers several times a day. It now affects those areas several times an hour. I’ve been diagnosed by to Brain & Nerve professors who have each prescribed various medications, each of which gave no relieve but only depression. As the years have gone on, other areas of my body now cramp up. Legs, arms, back, jaw, tongue, abdomen and diaphragm, the last two, though scary as it‘s difficult to breathe, they aren’t the most painful. (Cramps in the anal sphincter muscle are the most painful.) Fasciculations occur in several muscle groups continually. Both professors showed great interest when I explained that both my sons (from different mothers) also appear to suffer from CFS, yet my daughters show no signs. We, me & my sons, are undergoing genetic testing to help in the research.

Hello, this is my fist time posting. My neurologist just recently told me that I most likely have Benign cramp fasciculation syndrome. He is waiting for some blood work to make sure it isn't something else. I've noticed that whenever I look it up, all I find is cramp fasciculation syndrome. Is there a difference between Benign cramp fasciculation syndrome and Cramp fasciculation syndrome?

Hi I was recently diagnosed with the same condition. Has it gotten better or worse since 2020? I’ve been dealing with this for 2 years and I’m scared it will get worse.

I don't have cramps, but I do have fasciculations, and aching pain. The snake oil remedies won't work. I've had this since Feb last year, it's sort of a curse. Feels like someone is continuously tapping my arms, legs, or pulling little muscles in my hands. Things that helped improve it:

- Getting a full 8 hours of sleep, no matter what. If you haven't tried melatonin supplements, now's the time. I'd start with 3mg and see how it goes.
- Eliminate all caffeine, even chocolate
- If you've got the willpower to do it, try doing 2-3 weeks eliminating dairy, gluten, and alcohol from your diet, then slowly add them back in one at a time, one week at a time, to see if it has any impact. Reducing dairy and also eliminating alcohol helped me a lot.
- Get your B12 and D levels tested. If they're super low, or very low, try supplementing. These helped me a little, not a lot, but they did help a little.
- Exercise more, and focus on work as much as possible, find distractions. If I get 30 minutes of nothing, I will gravitate right back to thinking about it and it gets worse.
-Cal/Mag/Zinc supplements may or may not do anything.
- Neurologists may give you a benzo, like Gabapentin or Carbamazipine. You won't get addicted to any of them, but it's a coin toss. I've read hundreds of forums over the past year and some people react positively and their twitching and cramps totally disappear. Then there's people like me, where it magnified the twitching, making it far worse, so I stopped taking these things.

It never really gets better, so it's best to find a routine to work with it somehow. Me personally, I refuse to accept that there's not something in my body causing this irritation and I continue to search for answers. I'm following up with a gastroenterologist and a urologist to see if it's something in my gut causing all this. I'm keeping a journal which you might want to try too, to see if there's something that I'm either doing or eating that's triggering this. Good luck!