Hip Dysplasia and EDS

Zebra

I had to get X-rays and some tests for hip dysplasia this afternoon at the local hospital. I have a connective tissue disorder called Ehler-Danlos Syndrome (EDS) that, among many local and systemic issues (including degenerative bone and joint disease), renders my ligaments very loose and my muscles consequently very tight, so my joints tend to dislocate or sublux (partially dislocate) and I have chronic musculoskeletal pain. It also affects my skin, which is very thin and velvety, so it tears and gets sores and cuts easily. As an infant, I had developmental hip dysplasia, which is a condition where the hips routinely pop in and out of the socket, so I wore a brace, called a Pavlok harness, to help maintain their correct position and better shape the acetabulum (the cup-like receptacle in the hip that receives the ball or head of the femur).

I have had hip problems on and off since adolescence but over the past year or so, they have gotten progressively worse. Most mornings when I wake up, at least one hip has subluxed, so I have to jump around on my other leg to shake and shimmy it back into position. It is quite painful, particularly if I have trouble getting it back in and it grinds when I walk. The muscles surrounding my hip are chronically tight because they have to take over the role of what should be┬ástronger ligaments of stabilizing the hip joint and maintaining proper contact in the articulation. They are also always sore and throbbing by the end of the day. When the muscles relax overnight, if I’m actually asleep, the integrity of my joint suffers, the ligaments are ineffective at keeping the bones in place, and the femur start to slide out of the hip socket. The X-rays today will provide my rheumatologist with a better assessment of the shape of my bones and joint so that hopefully we can develop a better plan. Hip dysplasia is more involved than just lax ligaments allowing for undesirable excessive movement. The shape of the bones together may not be as congruent as they should be, but what any findings will necessitate in terms of treatment is still unknown to me.

Of course, after I got my X-rays, I received the terrible news that my rheumatologist is leaving the practice and he’s one of the few doctors I genuinely like, so I’m anxious to see how my care progresses.

I have to wait about two weeks for the results, now that my care has been transferred to another provider. In the meantime, I’ll continue my hip re-locating dance and use ACE wraps and frozen peas religiously.

(The symbol of Ehlers-Danlos is the zebra, the reason for which you can read here. It very much captures my presentation and experience with the disorder.)

 

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