I often have to force myself to relax, I will notice that my back and neck and hands are clenched, and it almost feels better sometimes to keep the muscles tense...it's exhausting.
Funny, you both say fist clenching. I always described it as my son is curling his fingers and was told that isn't a MC trait...but listening to you both I now wonder because he curls his fingers into an almost fist. Can't say I see any of the other things you mentioned in your posts above this post.
Happy Turkey Day everyone.
I tend to get tight muscles in my shoulders and neck and I have had fist clenching, but after a nerve conduction study it was determined to be from nerve damage to my neck after an accident. The same can happen from brain or spinal cord damage.
My doctor told me that anywhere you have nerve damage or compromised innervation to an area, the myotonia will become worse from the muscle overfiring. Because myotonia congenita is not a nerve disease, it only causes stiffness when we first start movement that requires electrolytes to move in and out of the muscle cells.
This is a bit of a soapbox for me because too many doctors blame everything on the myotonia and ignore other conditions that even "normal" people get from accidents or injuries. Sometimes it takes years to get a differential diagnosis and the other conditions could have been treated all along.
Thank you, everybody! Carol - Sometimes it's just fingers curling, but so tightly that it almost feels the same as clenching a fist. Jan - I think I have the opposite issue from you - I am finding that doctors are just brushing off symptoms that I am positive are related to the MC, because they aren't familiar enough with it, and their understanding is that it's just a mild issue with muscle contraction & relaxation. But I am quite positive that I see a real difference in my hands & forearms since the surgeries - perhaps the pain and discomfort causes the muscles to contract, and then I feel the MC symptoms, but to me, there's no way that it's not been involved and impacted somehow. My left leg also changed after my accident in 1999, and though I didn't know why, it's basically the same issue as my arms now. A kind of hypersensitivity, or something. Anyway - Happy Thanksgiving to you, and be talking with you! lois