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    Joined: Jul 2011
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    Joined: Jul 2011
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    I am so glad for all these posts. I was talking to my mom about EDS and she told me as a toddler her shoulders would pop out of joint everytime someone grabbed her by the arm. Eventually her parents learned to pop them back in but it was very painful.

    My epidural did not work a bit and I had to go under general. My son had to have stitches in his lip and screamed and cried like crazy. They assured me that he was totally numb but the way he screamed... I don't think so. My mom was almost killed by a dentist trying to numb her...

    Lots of arthritis on her side.

    I really need to learn more. I'm just absorbing these posts. I'd never heard of these disorders outside of here.

    Joined: May 2012
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    Originally Posted by HowlerKarma
    I've popped my knees out of joint shaking water off of them when stepping out of a pool or shower. Both knees readily subluxate, and I can also subluxate both wrists and ankles at will, too. It's a lot more inconvenient than painful-- at least if I don't ask them to bear weight before I figure out that they aren't aligned properly, that is.

    I'm kind of excited that I finally know why stuff that seems so HARD for me seems so weird to other people!! I have to be SO careful to align my feet with my knees or they'll subluxate on me. SO painful when walking.

    Oh boy.. this alone screams some type of EDS. No doubt. ((( hugs ))) to you...

    Joined: Apr 2011
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    It was a happy day for me making sense of so many "random" "unrelated" things in one fell swoop. I don't know that I was excited HK, but relieved at the very least.


    Joined: Jul 2011
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    Do any of you have knees that "lock"? Twice in the last few years I have been taken to the ER by ambulance when I leaned or just moved slightly and my knee locked in position where I could not move it. After some muscle relaxants and pain meds, it clicked back into place and I was perfectly fine. It was so painful each time and I really couldn't explain how it happened. Once sitting on the floor and once sitting in a chair doing very benign activities.

    I also have a weird thing from high school that no one has ever explained. I ran a low-grade fever for 77 days straight. Only thing the extensive testing I underwent ever showed was an elevated SED rate in my CBC which they said, IIRC, was related to inflammation. No precipitating events and one day I just "got better". I missed the better part of my senior year in high school due to that.

    My most recurring joint issue though is my ankles. They are so floppy that I need extremely tight skates to stand up on ice skates. Sometimes I seem to "step wrong" and the bones in my feet really hurt until something shifts again. My siblings don't have these problems. I seem to sprain my ankles easily too. First time was when I was in first grade and most years since there has been an injury in one or the other. I now have chronic pain (tendonitis) in one of them, have to wear orthotics and limit activity. I'm only in my 30's.

    In bed, if the covers are at all heavy or tucked in, they feel like they are pulling on my toes/feet and it is so painful! I have to turn my legs or untuck the covers.

    That Beighton scale is weird. The knees, elbows, and pinky tests are all just as pictured or a bit more for me. I can touch my tongue to my nose but can't lots of people? I can't balance on one foot for my life.

    This seems like such a weird set of symptoms to explain to a doc.


    Joined: Feb 2012
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    I got more information today from the genetic counselor. It sounds like he either has EDS and maybe cleidocranial dysostosis (a skeletal abnormality) or just EDS. The ruling out of cleidocranial dysostosis is looking good.

    Joined: Apr 2011
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    Hi KJP I am glad you've had some useful follow up! It did sound much less helpful than you would hope from your last post. I do hope there is only one diagnosis, that's quite enough on its own.

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