Dystonia Nightmare

I’m worried that my dystonia is spreading. I’ve only been diagnosed with cervical dystonia, but the muscle spasms in my back and right hip have gotten worse in recent months (despite a few breaks). And in the last two weeks, I’ve woken up multiple times with my calf muscles knotted into agonizing bundles.

I’m still diligently taking magnesium supplements, which curiously seem to have helped relieve some of my neck spasms but haven’t touched my lower body. I bought another variety today—Bluebonnet Magnesium Citrate—and hope that if I up the dose and take different types, I’ll stop having so many spasms.

That said, I’m no fool. I know that the increased fasciculations, cramps, and full-blown spasms are a serious issue. I found a movement disorders clinic at a big city hospital five hours from me, and I’m headed there in August for a workup. I don’t know if fibromyalgia or dystonia came first, but at the moment, the dystonia is the scariest thing I’ve faced after years of mysterious symptoms. To not know if I’ll be able to walk normally (or at all) from one minute to the next is a unique kind of torture.

I haven’t run in 9 days because last Sunday when I ran, I felt great in the morning, but later locked into an all-night battle with spasms through my torso, hips, and legs. Dystonia, like fibromyalgia, is often poorly understood, and I’m just hanging in there the best I can. Slow walks and time on the elliptical seem to help me stay mobile and sane, but I feel like my body is getting away from me. I’ll keep y’all updated on how this plays out, and if you have suggestions, please let me know.

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