I often find myself involuntarily tensing and contorting my muscles into painful positions—like arching my back very deeply or sharply pointing my foot/toes. This occurs randomly, and many times every day. It can happen in one to three areas of my body at a time, in varying combinations—it can occur in my jaws (clenching my teeth), tongue, back, hands, arms, buttocks, legs and feet. I don't realize I'm doing it until it really starts to hurt! Once I'm aware that I'm tensing, I can make the muscles relax, but most of the time, it just happens again after 10-30 seconds, or if not that soon, a few minutes later (either the same part of my body, or a different one). This leaves my muscles (and sometimes the joints involved) very fatigued, sore, and sometimes feeling as if I have just recovered from a Charley-horse-type of cramp. The only explanation I can think of is that it is stress/anxiety related, but it even happens when I’m having a little–to-no anxiety at all, so I’m not convinced that this has psychiatric or emotional cause. Also, I've tried treating this problem as if it were caused by stress (relaxation/stretching/anti-anxiety meds), with no success. Sometimes the resulting pain, from over-extension of the muscles/tissues, can be partially relieved by NSAIDs, but I would like to stop the actual problem, not just treat the resulting pain. Anybody know what this might be? I don’t really know anything about dystonia, so if someone could tell me if this problem sounds like dystonia or not, I would be very grateful. Thanks.

hi, I am Grace. 60 years old. Your symptoms do sound like dystonia, but you need a neurologist to confirm. I have dystonia and hope to be able to find out on this site what other people with dystonia have to deal with.

Hi-
I have been diagnosed w/ dystonia. Officially, by a movement disorder neurologist. Please search for a Movement disorder neuro and have them examine you. If you cannot locate one, call the DMRF @ 800-377-DYST. They will send you a list of docs near you or in your state.
You may have to wait months, or may get lucky as the new ones out of their fellowships started in August.

Mine is relieved by muscle relaxers. Theory- my muscles are in constant contractions, not that youcan feel it or stop it, the MRs slow them down.

PM me if you want. There are a lot of strange/odd/rare movement disorders, most docs have never heard of.