I guess I should have started this sooner

Hello all you zebras! Or maybe you are here because you were searching to learn more about EDS, Ehlers-Danlos Syndrome?

I have unsuccessfully blogged about a few things... crafts, wrestling, vegetarian recipes, etc...

I thought maybe I should blog about something I am more familiar with since I have lived with it for over 3 decades!

I still have yet to get a diagnosis of what type of EDS I have.  Back in 2004 I saw an orthopedic doctor that later called me at home asking if I had ever heard of Marfan syndrome.  He called me a loose jointed gal & told me to avoid sports & be careful...

I ended up going to a doctor in genetics at the university & being told I do not have Marfan syndrome, but may have a type of EDS.  I had knee surgery on my right knee that year, while I was under my doctor hyper-extended my knee 15 degrees, cleaned up my knee & I was off!  About a month later, after the swelling, it went back to how it was before the surgery.

I can sublux everything except my elbows.  I can dislocate my patellas.  I was told by previous doctors that I have arthritis & need surgery.  We just moved & now that I see an honest doctor.  He told me that I am not a good candidate for surgery because of my connective tissue disorder.  He said my right patella can move 4 quadrants & he stopped because it showed no sign of stopping.  I have never been told that before, never said that in my records.  In fact, the doctor that wanted to do a lateral release (DON'T DO THAT BTW!!!) on me said I have normal stability & ROM.... obviously I never went back to that quack!

I wish I could say that I have found things that help, but I have not.  I am allergic to SO many medications.  I have adverse reactions to even more.  I have done PT SO many times to no avail!  I have been told I just have fibromyalgia.  I was also sent to behavioral health for dietary counseling & weight management.  I am 5'7" and 135 lbs... she asked why the heak I was sent there?!?  But she proceeded to tell me that I should be weight training for an hour daily.... I think she was trying to kill me or severely injure me... and of course, she had no idea what EDS is or what it causes.

I hope to learn more & find some relief.  I am looking in to getting finger splints and apparently doing PT again... although trying to get in somewhere else, insurance is NOT helping me there!  I feel like I am constantly searching online for validation or answers to what is happening.  I never find anything more than what I already know.  I really hope the EDS clinic that opened in Maryland last year will find answers, share what they learn with doctors & find a better way to diagnose EDS, especially type III.  I hope awareness will spread, especially in the medical community.  I am REALLY tired of hearing nurses & doctors say "I have no idea what EDS is" or "I heard of it, but don't remember anything, never seen it."