I have a similar problem. I have a rare neurological disorder HNPP and it effects my muscles and nerves. But now I’m dealing with neck shoulder and upper muscle pain which my neurologist doesn’t think it’s from my condition. So he is ordering more genetic testing.
There are times I can’t even move the muscle pain is almost paralyzing. So I would suggest you speak with your doctor about getting genetic testing otherwise you will be going around in circles. I’ve tried everything and nothing releases the pain!