Hi everyone. I'm still in the testing phase of all this (wheee) but my rhuematologist (sp?) mentioned something about hypermobility, so I thought I'd pop in here. I'm 27, have big pain in my lower body joints (and my muscles are tight and sore) and my spine. I have constant bursitis in my left hip, tendonitis in both knees (and I thin the right hip gets bursitis, too) I have a slight curvature (lardosis?), but nothing to set off alarms, my spine xray was normal. My hip xrays are normal, my knee xrays are normal, my blood test are normal yada, yada. Aside from already having a small pharmacy in my system (wellbutrin, cymbalta, lamactil, loestrin, allegra, astilin, ambien cr) I now have lyrica! None of the NSAIDs worked for me, have they worked for anyone else? I've never dislocated anything in my life, so I'm not sure if he's right about all this. How has everyone else's experience been with diagnosis? Thanks in advance...

Not everyone experiences dislocations that has EDS, and there are also some people who do dislocate or sublux on a normal basis, but just don't realize that's what their body is doing or that's why they have certain pains... usually because they go right back in. Any how, if you have the Hypermobility type or Type III, then "tests" aren't going to be able to give you a defined diagnosis because they haven't come up with one yet that is accurate. The other types do have tests though... ususally a skin biopsy. Personally, I was diagnosed by my symptoms. The links in this thread, especially the one with the bold print and EDNF's web page have a good list of what to look for and the symptoms (I hope I don't sound like a rambling bat... It's 1 am my time and I'm brain dead and falling asleep...). The main symptoms for my type are joint hypermobility (that may or may not actually involve dislocating or subluxing joints, but usually does), skin fragility and stretchyness (when I say fragility, I mean that it tears easily, doesn't heal fast or well and scars badly), and the skin is said to be "velvety"... that's something I never really understood.

Personally, I also have symptoms from other types as well, but I have not seen a genetisist yet, so I guess, I'll find out after I see the EDS specialist at Stanford if I have a crossover in my types. I bruise easily, have cardiac complications and some other stuff. I recommend keep up with the testing, but remember that EDS can't always be diagnosed correctly with tests. I recommend finding a genetisit or someone who has seen a lot of cases of EDS if you can and seeing them.

Mhmm...I usually recommend a person with EDS or suspected EDS to see a geneticist. Sorry rheumies.

I have crossover involving several types...hence I'm currently typeless. It shocks a lot of docs because they get hung up on the typing...but what would they do if someone with Type III had a bowel rupture?????

*bump* We have a lot of new EDSers so I thought I'd "bump" this thread so everyone can have a look see!

Hi this is my first ever post! I just found another very interesting link that you may want to include. It has some very detailed medical photos of ppl with various forms of EDS. Sorry if someone else has already posted it or something.

http://dermatlas.med.jhmi.edu/derm/resu ... -903490152

Oh and I'm new to the Board... I haven't been officially diagnosed with EDS yet, but I think it is only a matter of time before I am...

Hi,

Both myself and my partner have Hypermobility Syndrome. I have set up a blog that provides a central source of information about Hypermobility Syndrome, current news, raising awareness of the condition and fundraising for HMS/EDS associated charities. Please take a look:

http://hypermobilitycampaign.blogspot.com/

I hope that you find my info helpful.

Cara x