I have a family member, woman, who is in her late 30's and was diagnosed with Ehlers-Danlos Syndrome. It is a tissue disease that could be similar to yours. I believe a sports medicine physician helped her. She is going to a personal trainer for PT and is being helped this way. I am not sure if she had the swelling, like you describe, but her muscles were weak and her joints. You might Google it to see if it sounds like your symptoms. Good luck and keep being proactive. Keep researching and finding doctors who will listen and help you. My family member had to keep looking until she found the right dr. This may not be what you have but you do have something, and you will get the right answer if you don't give up!