Ehlers-Danlos Syndrome Support Group

I'm not even sure I know what that is? What do they do? My genetacist was wonderful and has guided me as to how to care for myself and my family with EDS. He advised many things, but never mentioned that... Maybe I'll e-mail him and ask if I get a chance... hugs, lylajean

I am not sure if you mean Physical Therapy but I have a son who suffers from chronic joint pain and in the beginning of his PT he suffered but not he has reduced his level of fatigue immensely. I do see the positives and they do outweigh the negatives! I hope this helps:)

From what I have read the wrong kind of physical therapy can and will make EDS worse-because if the do the wrong exercises, it can stress your joints.

Physiotherapy is (to us in the USA is Physical Therapy), same thing.
I can only tell you that with me, I also have degenerative scoliosis with my EDS, I really didn't do well UNTIL my local hospital PT department put in a small pool and now I have aqua-therapy, the water is always warm and if you aren't a "swimmer" you don't need to worry because they can keep it very shallow. It helped me a lot to reduce the stress on my body by becoming bouyant, I did over do a few times and my genetic Dr had to help educate my PT people on working with me, but it's great now.
One rule of thumb, it shouldn't hurt...ever!
Take care and good luck! Konnie

hey girl, I think it depends. Yes it hepls me a lot. But then you run into finding the right person. I took us about 6 months of trial to find someone good. Talking is never bad and the right combo of meds is important, I biggest prob is getting all my docs to talk. I sat in an office last week and on my celly calle done and Chuck called an other one for me put them all on speaker so everyone knew what was going on. Good luck Robin

I have had PT that has hurt more than it has helped. Even dislocating joints while trying to do it. I am pretty sure weight training therapy is out. But my TENS unit helps hurting joints immensely.

i've got EDS3 but its cross with vascular. any way. i use to do physio but we found that it only worsened for me. i only do the physio when i have injuried myself. when i did my ankle and spent 7 months in a cast i had to do physio to loosen it but i did 4 sessions an the physio said she could no longer help me. i think if you find someone who understands eds (which in my personal experience is very hard here in Oz any way) then you have a great chance that it may help you. i did find a physio who was great help for my elbow which has only dislocated once since i've been seeing her! an thats a massive improvement. however it does not really reduce my pain. but physio is different an works differently for everyone. my friend who has eds as well cant do physio with out dislocating or breaking something. so like i said its different for everyone.

I'm new here...
I hav'e not had good experiences with physiotherapists. They all say the same kind of thing: Whatever your last physio told you to do is completely wrong, but my exercises will cure your pain in no time! Before I was diagnosed by EDS type 3, I got 4 different diagnoses from 4 different physios. One of them, who was highly respected in Vancouver, BC, damaged my sciatic nerve. The most dramatic improvement I have ever made was when I had a bad case of pneumonia and stopped doing any physio exercises for 3 months.
None of the physios I saw were specialists in EDS so your experience may be more positive.