How Best Can I Get Rid Of The Pain Caused By Stickler Syndrome?

I have Stickler syndrome. I am trying to find ways to treat it. right now i am lossing use of my hands. my limbs go to sleep on me when they see fit. i am in pain 24/7. i need a treatment plan. my doc is giving up. she dont know what to do. they put me on percecet for pain. they have me on a fetnal patch. i am still in pain. I am now lossing my use of my hands. i need help. I have seen the ramitoligy and nerve doc and spine center. i need to know where to go to get help. i was 14 when i was told i have stickler syndrome. my father gave it to me. now that i am 30 this year. i am getting worse. help me pleases. i cant even work. thank you melissa