Praying for you and your physicians - Hope they can find what's wrong and heal you.
Praying for the answer with you.
Rose have you tried receiving a massage from a license massage therapist? From what you have posted, if you haven't, I don't see any contraindications for a massage, but more then likely a massage therapist that neuromuscular therapy might help. If interested, this site would be benifitical for you to find a license massage therapist. www.amtamassage.org