Question
I have extreme pain in my neck, shoulder, left elbow, knees and tail bone.  I have EDS and wear a Fentanol Patch all the time to help control the pain.  I am depressed and seek help with pain relief.  Some have suggested Physical Therapy.  My worry is it doing harm rather than good, if the practitioner is unfamiliar with EDS.  Is there a listing you know of PT's with experience by geographic location?  Also any other suggestions for pain relief?

Answer
Physical therapy for EDS is one of those things that can be really beneficial if done right, or really harmful if it's not.  When choosing a practitioner, you need to ask a lot of questions and make sure the PT knows about EDS and has experience treating it.  If you can't find someone experienced, ask questions about their philosophy and protocols.  Trust your gut feelings.  If the PT asks you to do things that you feel are harmful, your instincts are probably right.  The PT needs to be willing to modify and adapt various therapy techniques to your specific limitations.

I don't know of any listings of experienced PTs.  Your best bet is to join a local EDS support group or one of the national email groups and ask other people with EDS for a referral.  One of the largest groups is CEDA (Canadian Ehlers-Danlos Association) on Yahoogroups.  CEDA actually has over 800 members worldwide and a lot of them are in the USA.  

http://health.groups.yahoo.com/group/ceda/

Good luck.

-Barb