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Cramping Fisciculation Syndrome

Autoimmune Diseases | Last Active: Mar 9, 2023 | Replies (9)

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@stevevon

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.

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Replies to "Well I’m pretty familiar as I’ve had it now for about eight years. I have been..."

@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?