Cramping Fisciculation Syndrome

Good morning @stevevon i had not heard of cramp fasciculation syndrome before so I looked it up. It seems to be very rare, not understood, and still undergoing research. I did find some groups that members have mentioned CFS in:
https://connect.mayoclinic.org/discussion/peripheral-neuropathy-and-benign-fasciculation-syndrome/
I’ll ask some members, @kennapie , @kimegraves , @wiley , and @willisann , to join this conversation to see if they might have some help for you.
You may also want to go to the neuropathy discussion group and post your question:
https://connect.mayoclinic.org/group/neuropathy/
What has your doctor explained to you about cramping fasciculation syndrome?

Well I’m pretty familiar as I’ve had it now for about eight years. I have been told it may go away one day but have my doubts about that. My muscular neurologist recently left the practice so I am in search of a new doctor here in New Jersey. I’m hoping that someone has some new ideas or therapy. I’ve been using limited exercise, stretching, massage and taking baclofen. The bad thigh cramping has diminished but the pain now in my calves and feet is constant and sometimes almost unbearable. I sleep very little. I have high blood pressure which precludesme from taking most pain medications. I also have Crohn’s disease, in my mind I think they’re linked both being auto immune. I read that low dose naltrexone is being used for some AI diseases. Looking for anyone who has positive therapy ideas.

I have never heard of it before, however I do get servere cramping in my thighs and sometimes they feel so tight, I have to feel them to see if they really are...(and they are not) They are not fun, however I would also like to know more about cramp fasciculation syndrome,

I am sorry, I meant to say I have servere cramping in my calves, not thighs

Talk to your neurologist about CFS. It sucks. But my understanding is there are many different levels of it and for some people it will go away on its own. And for others it never goes away. But get checked out because it’s extremely rare and you might have something else. Good luck.

@stevevon and @willisann Here is more information about CFS. GARD lists some ‘umbrella’ organizations which may be able to help you find specialists in your area.
https://rarediseases.info.nih.gov/diseases/6205/cramp-fasciculation-syndrome/living
Will you please share with me what you are able to learn?

I was diagnosed 15 years ago after going through several years of tests and 5 different doctors. Nothing makes it go away completely although some days are better than others. I'm on 3000mg of Keppra and 1mg of Clonzapam per day. I eat no chocolate or caffeine except one cup of coffee every morning.

@shadetree210 Welcome to Mayo Clinic Connect! I’m sorry it took so long for a diagnosis. That’s the problem with autoimmune diseases, it can take forever! Do you feel that youre doing OK with your current medications?
How did you finally find the ‘right’ doctor? Is she/he a rheumatologist?

I'm not sure the meds help. Some days are very bad and others not so bad. There is no day that I don't have cramps somewhere. I'm allergic to Tegritol. I broke out in a rash. It worked better than anything I have taken. I don't see any doctor now and haven't for several years. I was seeing a neurologist.