I am in the same situation, I have been having severe pain in my thighs like my muscles are torn all the time, it has now spread throughout my body, and exercise does not work, I am tired all the time, and wake up in pain everyday. I do know that small amounts of exercise are your best friend at this point because if you don't work them they will cease up. I am asking my doctor for a referral to a neuromuscular specialist. Keep at them and maybe see if they can look at your genetic markers to see if there is a hereditary problem that is not being picked up.

Good Luck and keep in touch so we can update each other and maybe find an answer together