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StephanieT (@slturley)

Benign Cramp Fasciculation Syndrome

Brain & Nervous System | Last Active: 6 days ago | Replies (24)

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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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Replies to "I have been living with this for more than 20 years. I was diagnosed in 2015..."

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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