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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
I have had Cramp Fasciculation Syndrome for 3 years. It started with a twitch in my left eye, which is now pretty much gone. It progresses to my left lower leg, calf and foot. My left tricep area is fully involved also. It is 24/ 7 and the muscle activity in my left leg causes my left foot to tremor which keeps me up most of the night. The other huge issue is the muscle cramping. Last night was horrendous. Inner thigh, top of foot, forearms, toes and fingers...horrible pain. I take klonipin, ropinirole, Baclofen...nothing works. If I could just find a medicine that helps....can't take it anymore. Ideas?
Replies to "I have had Cramp Fasciculation Syndrome for 3 years. It started with a twitch in my..."
I was diagnosed with CFS 7 years ago..with me some meds for for a time, then stop working. I stopped klonipin because of memory issues. My current regime (which works for now) is Cymbalta(60mg), Gabapentin (200 at bedtime), L-theanine (200 mg) and a Walmart sleep aid with melatonin, magnesium, chamomile, gaba, and valerian root. I make sure my VIT d and magnesium are in range as well. It’s a struggle.
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Hello @wendycad,Welcome to Mayo Clinic Connect. I know it's difficult to find something that helps when you have a rare disease like Cramp Fasciculation Syndrome. You mentioned that you've taken many different medications to try and calm the nerves but nothing has worked for 3 years since you were diagnosed. There is some treatment related information on the Genetic and Rare Diseases Information Center (GARD) that may be helpful.
- Cramp-fasciculation syndrome: https://rarediseases.info.nih.gov/diseases/6205/cramp-fasciculation-syndrome
Has your doctor or specialist offered any other treatment suggestions or have you thought about getting a second opinion?