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EDS

Sep 03, 2015 10:57 PM

So, I'm beginning to think about something. I've been doing a fair amount of reading to see if there is a reason I break and dislocate bones and joints so easily. Haven't broken anything for a while, but it's kind of always been in the back of my mind. When I have done something, it has always been with a traumatic type injury(fell down stairs, hit by car, etc). I feel like I might be grasping at straws but I don't really have any other ideas.

Sep 04, 2015 1:18 AM

My son has a brittle bone disease called osteogenesis imperfecta (oi). Very lucky that his case is mild. People with oi tend to break bones and dislocate joints very easy.

Sep 04, 2015 4:22 PM

Joy, I've been tested for oi and that's not it. Also dealing with hyper mobile joints(upper more so then lower).

Sep 04, 2015 5:28 PM

Hi I'm in a similar situation to you I suffer subluxation on a daily occurrence both knees, shoulder & now my hip Gp said I had hyper mobility joint syndrome which is when it starts to cause pain, but I've read up on eds & I tick every box except the stretchy skin, hoping to be referred to rheumatologist as they will diagnose

Sep 04, 2015 9:06 PM

A geneticist that knows EDS is your best bet for a diagnosis. From what I have read from others with EDS many rheumatologists don't acknowledge that EDS or HJM cause pain. Some do not even believe they exist. I was diagnosed by a geneticist at Buffalo Woman & Children's, Dr. Luther Robinson.

Sep 04, 2015 9:11 PM

Oh yeah, some doctors that are not educated in EDS will try to tell you that if you don't have stretchy skin you can't have EDS, but the truth is you don't have to have stretchy skin. I have hEDS aka EDS type 3.

Sep 04, 2015 9:54 PM

Scary, I don't have the stretchy skin either, but my right knee feels like it almost like falls forward if that makes any sense and my left ankle as well.

Sep 04, 2015 10:11 PM

My skin isn't very stretchy either. My knees bend backwards. It used to be cool, but now they go back at really bad times. I sprained my left knee really bad last year, by putting cinnamon rolls in the oven. Then a month later I dislocated my right ankle by walking down my hallway.

My fingers bend at a 90 degree angle. I put my palms flat on the table and slide my hands together untill my fingers on both hands are straight up. My thumbs not only touch the under side of my fore arms, but also the top sides. Even at 44 I can put my palms flat on the floor without bending my knees. When I was a teenager I could cross my ankles and still put my palms on the floor. I can turn one foot around so that my toes of one foot are touching the heel of my other foot and vice versa.

I learned the hard way not to show those "tricks" off anymore.

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