Ehlers-Danlos Syndrome Support Group

Hi again, I thought this question sounded familiar (very smart to put it on more than one board, way better chance to get some responses). So as not to bore you with a repeat (I think it was in the chronic pain group that I wrote something), anyway you are being very wise about trying to educate your PT especially, they often unknowingly do more harm than good (as was my case). Hopefully your Dr will send you to see a genetic specialist if he questions the EDS diagnosis, and if you do indeed have it, your specialist will hopefully have a PT person who is familiar/educated about working with EDS patients help with your therapy.
I see my specialist in a University Hospital but do my PT at my local small hospital and they worked very well sharing information to keep me safe (after some blunders).
Again good luck to you, Konnie

I am also adopted and and EDS dx came when I was 7 ears old about 30 years ago. The best info is be your own advicate. Do you know what type you have? There are great docs out there but finding one is the trick. Good luck. here if you need Robin

Althouh I have not seen a geneticist, I am sure about the EDS as I meet all the criteria for it-you can see most of my viens where there is no fat layer covering them, strechmarks from growing, unstable joints, easy bruising, and a beighton score of 7 (6 now, and could do 1 other before onset of bad pain.).
I do not have a confirmed tye, as the docs are wavering between 2&3.
The nearest genetics doc is over 40 miles from me, and I'm not sure if medicaid will cover it.

I was diagnosed with fibro but then with EDS3. I am in constant pain in most of my joints. IT sucks - welcome to the group x

I completed my dissertation this year for my doctorate in psychology. The topic was FMS. In my research I found several articles linking FMS and EDS. Also, the rheumatologist who diagnosed my EDS told me that FMS is commonly seen in EDS patients. If you google fibromyalgia + Ehlers Danlos you should find articles that discuss the two conditions together. Good Luck!

I was first diagnosed with Fibro about 21 years ago. What I think is that my Fibro is a reaction to my EDS. Without my muscles being tense all the time my joints would continously dislocate. As I have aged the Fibro has gotten worse as have my joints, so for me the 2 have gone hand in hand. If I take a muscle realxer for the FIbro my joints especially my knees and ankles hurt worse!

My FM diagnosis came before my EDS diagnosis. It feels like asking "What came first: the chicken or the egg?" Many people with EDS have FM as well as a whole long list of problems. I know I have all the criteria for FM, but the pain I describe is mostly my EDS and RA. The only time I really notice the FM is when I get a pain response (full body pain) from an injury related to EDS and RA. It's not the actual diagnosise that determines your PT outcome. It's how what you are doing works for you. Good luck!