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Benign Cramp Fasciculation Syndrome

Posted by StephanieT @slturley, May 27, 2020

Hello, has anyone here been living with the struggles of Cramp Fasciculation Syndrome? I was just diagnosed last week after months of horrible cramping. Can anyone tell me what has worked for you? I am interested in connecting with other people who are suffering with this.
Thanks in advance.

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laurenmail | @laurenmail | Jan 19 3:17pm
In reply to @captainanxiety8 "I don't have cramps, but I do have fasciculations, and aching pain. The snake oil remedies..." + (show)
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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!

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@captainanxiety8

I have had this about 8 years. The muscle nonsense is annoying, but the sharp pains and cramps are not too often so I've been able to live with it. I feel for you and am interested in any news of how you're doing!

Cheers

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randomsoldier | @randomsoldier | 8 hours ago
In reply to @jhn48110 "I've done a lot of lab work and had two EMGs and everything was normal." + (show)
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I've done a lot of lab work and had two EMGs and everything was normal.

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@jhn48110 @helennicola Sorry to revive what appears to be a dead thread. I'm new to Mayo Connect, and I'm newly finding out that the random torture I've endured for about 16 years has an actual name and cohesive symptomology.

Regarding the EMG, most of the NIH documents, white papers and other research I have seen so far suggests that an EMG does not provide direct diagnostic evidence of BCFS, but it is important to do because it helps the docs determine whether ALS (Lou Gehrig's Disease) indicators are present or not. Apparently a normal EMG does not definitively rule out early ALS, but lack of ongoing denervation or acute and chronic neurogenic changes points the finger more toward BCFS than ALS as the cause.

Further studies are necessary to definitively rule out ALS. Abnormal readings in 2 of 4 regions, along with some other specific distribution patterns and symptoms, are indicative of something that is not benign. The brainstem (bulbar), cervical, thoracic, and lumbosacral regions are the ones they focus on. I have bilateral thoracic outlet syndrome, and an EMG of my thoracic region was conducted 12 years ago with no abnormal findings. Three lumbar spinal surgeries later (after the second one impinged my spinal cord and turned off my right leg) I developed cramping and fasciculations in my right calf, then thigh/achilles, and then it became bilateral manifesting in either or both legs simultaneously.

So it is better if your EMG is normal, but BCFS hinges more on clinical diagnosis and medical event history than any specific findings from an EMG. I've heard many cases are idiopathic, but some seem to have identified causes. Also, I'm here for more data and information, so there may be some other level of EMG or nerve conduction studies that have proven effective diagnostically. If so, certainly open to hear of them.

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helennicola | @helennicola | 8 hours ago

Sorry but I have no idea what you are referring to, I do not have BCFS, my SFN had improved greatly and has not progressed for 8 years now. I had the nerve conduction and EMG tests at the onset which were negative. I have not needed any further testing I’m happy to say and see my neurologist 1x year.

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