I actually just had to read up a little bit on your condition. I am so sorry that you are going through this. It’s hard when we get these rare diseases. It appears that yours affects the muscles. It’s hard to be in pain no matter whether it’s affecting muscles or bones or other tissues surrounding them. I wish you luck on finding out more about your condition. Stick to reputable sites. I don’t know whether or not physical therapy may be something that would be helpful for you. Not knowing enough about your condition it’s hard to know for sure. I wish you the best!