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.

Apple Cider Vinegar in water in the a.m. THE AMISH have a product that works also for me.Caleb Treez Organic Farm, I take two ounces of this when I get the charley horse, it STOPS IT COLD in less than a minute. THE AMISH use it for their aches and pains after farming all day, it does work. I hopped around in severe pain and even went to the ER once and they did nothing. THE CHARLEY HORSES IN THE BACK OF MY LEGS WAS SCREAMINGLY PAINFUL. You will have to do some stretching exercises off the internet to keep the CHARLEY off….Margaret O'Brien….sufferer of NEUROLOGY in the legs…..You can order this on line…I always get two at a time and keep them by my bed…M.

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the Bottle has a tree on it and says STOPS LEG AND FOOT CRAMPS, I take a whole ounce or two when the CHARLEY GETS TO ME…It works….

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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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I appreciate the self-advocacy you are doing, @captainanxiety8. It really is important for each patient to research as well as go to doctors for help. It sounds like you have come up with some good plans, thank you for sharing.

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Thank you so much for you input. I will definitely try these. I’m glad you don’t have the addition of the cramps. I’ve already started the Neurontin but I’ll have to build up to see if it helps. I really hope so.

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@margaretob

Apple Cider Vinegar in water in the a.m. THE AMISH have a product that works also for me.Caleb Treez Organic Farm, I take two ounces of this when I get the charley horse, it STOPS IT COLD in less than a minute. THE AMISH use it for their aches and pains after farming all day, it does work. I hopped around in severe pain and even went to the ER once and they did nothing. THE CHARLEY HORSES IN THE BACK OF MY LEGS WAS SCREAMINGLY PAINFUL. You will have to do some stretching exercises off the internet to keep the CHARLEY off….Margaret O'Brien….sufferer of NEUROLOGY in the legs…..You can order this on line…I always get two at a time and keep them by my bed…M.

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Margaretob, thank you for this information. Do you put the apple cider Vinegar in warm water or cold water? Does it matter? I used to put it in Crystal Light lemonade and was able to drink it that way. I’ll start doing that again.
Do you feel like the ACV helps with the cramps AND Fasciculations?

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I too have this disease. I have not gotten any relief and have tried lots of different prescriptions. Have you had any success?

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I believe I have cramp-fasciculation syndrome since my colon resection surgery in May 2019. I have muscle twitching primarily in my legs, but all over at times, along with severe leg pain. I initially thought it was from anxiety so I went to a psychiatrist in Louisiana and was able to get on Clonazepam, which helped me previously with intense pain from cervical spine surgery. It turned out that it worked as well for my new pain. Its the only thing that has been tried and true for me through everything. For my neck pain I was able to wean myself off after several months and was fine until the cancer surgery. Now I moved back home to Oklahoma and cannot find anyone to prescribe it and the pain is so severe again. Have taken everything for pain for14 years and every antidepressant in the world and have seen every type of doctor and every test. Next is to a neurologist but if I can't get clonazepam, not hopeful anything else will help. It was a lifesaver for me and only needed .25 mg a day.

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@wendycad

I too have this disease. I have not gotten any relief and have tried lots of different prescriptions. Have you had any success?

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So sorry you are having these problems…I understand. I am on Clonazepam after being taken off Quinine as that was effecting my kidneys. It has helped but still do have some twitches, sciatica pain and cramping but much less. Good luck with your search.

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@terryl62

I believe I have cramp-fasciculation syndrome since my colon resection surgery in May 2019. I have muscle twitching primarily in my legs, but all over at times, along with severe leg pain. I initially thought it was from anxiety so I went to a psychiatrist in Louisiana and was able to get on Clonazepam, which helped me previously with intense pain from cervical spine surgery. It turned out that it worked as well for my new pain. Its the only thing that has been tried and true for me through everything. For my neck pain I was able to wean myself off after several months and was fine until the cancer surgery. Now I moved back home to Oklahoma and cannot find anyone to prescribe it and the pain is so severe again. Have taken everything for pain for14 years and every antidepressant in the world and have seen every type of doctor and every test. Next is to a neurologist but if I can't get clonazepam, not hopeful anything else will help. It was a lifesaver for me and only needed .25 mg a day.

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@terryl62
Wow you have been through the mill! Cervical spine surgery, colon resection surgery and cancer surgery, that is a lot! But the only thing that has given you significant relief (Clonazepam) was obtained from a psychiatrist, and now that you are back in Oklahoma you can't get any more of it? Who have you seen about getting it and what was their justification for not prescribing more of it for you? Best, Hank

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I have been living with this for more than 20 years. I was diagnosed in 2015 by Mayo. I take Tegretol 200 mg when I go to bed. I am allowed to take 3 Flexeril daily, but I have taken myself off that. I still have the twitching and mild pain, nothing like before. The cramps and pain have been mostly on my left side, but they are starting to migrate to the right side. I get them in the back of my thighs, calves, hands, biceps, stomach, neck, sides, and toes. Oh and my left shoulder rolls forward and locks. I tried Baclofen 60 mg a day, but that didn't work. I can handle the twitching, even the spasms as long as the pain stays around 5, but when it was up around 9, it was exhausting. I just try to enjoy every day as best I can. I work 55 hours a week, sometimes more like 60 to 65, but I manage. My family doctor works with Mayo and when I left Mayo in 2015, they told him if the Baclofen wasn't working to switch to Tegretol. My bodgy seems to tolerate it well. I too have had many surgeries.

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@birdbeep

I have been living with this for more than 20 years. I was diagnosed in 2015 by Mayo. I take Tegretol 200 mg when I go to bed. I am allowed to take 3 Flexeril daily, but I have taken myself off that. I still have the twitching and mild pain, nothing like before. The cramps and pain have been mostly on my left side, but they are starting to migrate to the right side. I get them in the back of my thighs, calves, hands, biceps, stomach, neck, sides, and toes. Oh and my left shoulder rolls forward and locks. I tried Baclofen 60 mg a day, but that didn't work. I can handle the twitching, even the spasms as long as the pain stays around 5, but when it was up around 9, it was exhausting. I just try to enjoy every day as best I can. I work 55 hours a week, sometimes more like 60 to 65, but I manage. My family doctor works with Mayo and when I left Mayo in 2015, they told him if the Baclofen wasn't working to switch to Tegretol. My bodgy seems to tolerate it well. I too have had many surgeries.

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Hello @birdbeep and welcome to Mayo Clinic Connect. You certainly have many years of experience living with this, unfortunately.

So you are currently coping with pain taking Tegretol and finding that it is meeting your needs sufficiently? Do you do anything that helps you with the pain and living with BCFS that you think other members may benefit from?

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