Could this be Dystonia?

[FibroFighterLynn]

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.

[selmaS]

  U r welcome and do let me know what u find out.....I know so many that do not fit the typical symptoms and there r a few types out there of EDS.....

Good Luck

[FibroFighterLynn]

Thanks, selmaS.  I was recently asked by a doctor if I was super-flexible or if my skin was stretchy, etc. and she bent a couple of joints to see how far they would go.  That all seemed normal, so she said she doesn't think I have EDS.  But, I know EDS has varying forms and a wide range of symptoms, because I know a couple of people with it.   It's probably unlikely that I have it, but I will mention it to the doctor, and maybe ask if I could have an unusual form of it or something.  Can't hurt to ask, I guess.  Thanks again.

[selmaS]

  Hi....not sure if it fits Dystonia but have u looked into Ehlers-Danlos?

Bcuz our joints are loose bcuz of the ligaments do not hold them in place properly that our muscles have to work harder many times cramping and having spasms...Charlie horses too.

The fact u r not aware u r "testing" could be it is an involuntary movement or spasm.....so do ask a rheumatoid Dr to test u for EDS and see if that could be a cause for ur issues.