Ehlers-Danlos Syndrome is what I have. I am 38, and finally figured out what is wrong with me! All thanks to an old college friend, that I kept running into at my sons middle school. I have had joint and ligament issues ALL my life. I used to get stuck on the fences, and in trees, because my knees would pop out of joint, and I couldn't move. My Mom always thought I was crying wolf and would leave me there. I would eventually figure out how to maneuver myself down, and pop my knee back into place. I was always twisting, and spraining my ankles too! My jaw would lock either open or closed. Crazy stuff! Then when I was 16, (1986) I went on a hike/field trip with my high school history class at the coast. It was a 3 mile hike to the Pacific Coast, 4 miles down the beach, then 3 mile back along another path. I was fine til we made it halfway. I slipped off a seaweed covered log, and my lower leg hit a rock sideways, while I continued down to the sand. My left knee was dislocated so bad, I couldn't move. I was in so much pain! They had to helicopter me out to the nearest hospital. I did not break anything, but I did tear the meniscus a bit. I had orthoscopic surgery to repair that. The main problem after that, was my kneecap would not stay put, and neither would my knee! I would barely go a week, and would be back in ambulance heading to the hospital! My pediatric orthopedic surgeon was constantly pulling water off my knee. Finally after 2 years of this happening, he decided to put a couple of screws in there to hold it together. I remember him asking me if I could put my thumb to my arm, and flip my fingers backwards. (of course I did this easily) I don't remember if there was any diagnosis, other than he called me hyperflexible, and doublejointed. I then moved to Oregon, not even thinking about keeping any kind of medical records. I was so young, and didn't know any better.
Flash forward to now. I always try to be very careful with my joints, as most try slipping on me. I have recently been having extreme pain with my shoulders, and hips. I have been to 6 different doctors, and they just keep passing me around. I have to keep my arm wrapped around a pillow at night, because my darned shoulders will slip out of joint at night! I wake up in extreme pain. All the doctors don't seem to know what to do with me, or look at me funny when I tell them that my joints don't like to stay in place. :( Anyway, a couple months ago, I ran into my friend from college at my sons Middle School. My 12 year old always seems to be missing the bus! So, one of these days two weeks ago, she mentioned that her middle son has EDS. She was talking about how his joints were always slipping out of place, and she was always taking him to the doctor! I was like, "Whoa!" That sounds like me!!!! She asked how far I can put my thumb to my arm, and I showed her that I can lay it flat against it. She then said that I most probably had EDS also, get on the web to check it out, and to talk to my doc about it. I went back to my primary doc on the 23rd of December (2008) After checking me out, and talking about my history (and my Mother and brothers history) he says that I most definitely have one of the forms of Ehlers-Danlos Syndrome.
There are 6 different types of EDS, of which I know I am hypermobile. (but am worried a bit about the vascular one because of my Mom.) I am thankful there are boards to contact others out there. Right now I have been spending time on the EDS support group. http://www.ehlers-danlos.org/forum/index.php I am so thankful that there are more people out there with problems like mine!!!!!! For so long you think maybe you really are just super prone to accidents, and the pain is all in your head!!! My doc has written a letter to my insurance to get me tested to see which form I have. (it came last week!) I called the insurance company while I was in the Doc office. My insurance may or may not cover it. Its apparently flagged as not being medically necessary? I worry that I may be in for a battle to get it covered. Hopefully the letter from my Doc will be enough for them to pay for it.
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