While I was in DC, I was sitting talking with Sarah Houghton. She posted a year ago about Ehlers-Danlos Syndrome, which she has and copes with daily. A short bit:

“EDS causes every collagen cell to be faulty and programmed to be too stretchy. This means that skin, tendons, ligaments, and other collagen-heavy body parts are super-stretchy and flexible.  For example, I can touch the tips of my fingers to the back of my hand.  Joints are very unstable, painful, and dislocate often. Oh the stories I could tell about dislocated wrists, hips, ribs, and knees! Other effects are chronic systemic nerve inflammation and pain, easy scarring, eye and vision problems, digestive system problems, vascular problems, and increased overall sensitivity (food allergies, contact reactions to chemical substances, etc.).  Pretty much anywhere there’s collagen, we’re screwed.  A good way to think about EDS if you’re not familiar with it is that it feels like extreme rheumatoid arthritis in every single joint, with the addition of dislocations and lots of other nasty side effects when you least expect them.”

Shortly after I read that post, I went to physical therapy for my ongoing neck/back/shoulder problems, and my new PT, Jamie, said, “Wait. Your shoulder’s really mobile. Can I do a set of tests that aren’t just on your shoulder?” and promptly declared that I’d scored the highest possible on her standard test for hypermobility. It explained a lot — why I have muscle pain even though my range of motion is huge, why my pain just migrates around as I fix one problem after another, why my shoulder subluxates at my command, why I get trigger point migraines, why my right hip often feels like it’s slipping out of its socket (it is). Sarah’s post gave me some insight into what Jamie was talking about, and I was grateful. I fired off an email to Sarah thanking her for that.

So in March I was sitting with Sarah and we were commiserating. Great skin? Yep. Valedictorian of yoga, since it’s not muscle flexibility we demonstrate, but joint flexing? Yep. Injure yourself doing yoga as a result? Yep. Injure yourself doing just about anything if you’re not careful? Yep. Ache all the time? Yep. True believer about massage and chiropractic as ways to mitigate and maintain in the face of a body that’s just too stretchy? Yep.

Someone gave us a puzzled look. I said, “I have the baby version of the condition Sarah has.”

She gave me a funny look and asked why I said that. I made explanations to the effect of “my life’s not as debilitated as yours has been, and my joints don’t actually dislocate like yours do and and and…” On the one hand, that’s totally true. I do feel that way — like it’s just not as serious, because I’m not as impacted, so I don’t feel like I deserve to get the attention of saying “i’m sick.”

On the way back up to our room that evening, Colleen also pointed out that it sucks to admit that your body’s broken and that you’re sick, and it’s much more comforting to note that someone has it worse than you do. Well. Okay. Yeah, that too.

Yesterday as I was getting undressed for my twice-monthly massage, having already asked my therapist to please focus on my shoulder, which was spasming all week for no apparent reason, I noted that my right hip really ached. REALLY ached. It’d been twinging as I walked across campus earlier, but it actively hurt in that moment. So I did a forward fold, because that motion will often make my hips pop, and that settling back in is often what they need. But this time, it wasn’t a joint pop. I felt it move back with a meaty thunk. Like it was… shit. Like it was halfway to dislocated. Goddammit.

It hurt all night, and I downed a handful of painkillers to get to sleep.

This morning it’s fine. Now my shoulder just hurts again, tiny spasms all along my shoulder blade and a hollow clicking noise when I pull it back to straight and adjust my posture. Like it does every day of every week of my life.

You know why my shoulder hurts? Because my body doesn’t work right. Because I have a hypermobility condition, and my joints are all too loose, and my muscles strain to compensate by pulling tighter. And that has an affect on my life.

Whether I like it or not.

One Comment

  1. I always found myself paying close attention to your twitter updates when I caught something referring to your shoulder and neck pain. I hate to make this sound like a "ya, ya, me too, I have that too", but your post has seriously got me thinking. I’ve never heard of hypermobility but I’ve had pain problems for as long as I can remember, and most doctors have usually just brushed me off. Some episodes last so long and are so bad (ranging from hip pain, foot pain, shoulder/neck, sacroilic joint or whatever) that I find myself in total hypochondria mode because surely someone my age shouldn’t be in this much pain for no apparent reason (so say doctor) so I must have something serious like M.S. or spinal cancer, or leukemia or lupus. My physical therapist always called me "loosey goosey" and I’ve had yoga teachers stop me mid-pose to tell me to be careful because I was "hyper-extending". I wowed by ballet teacher when I was four because I could lay on my stomach, curl backwards and make my head and feet touch each other. Nobody else in my class seemed to be able to do it and I remember thinking "wow, I’m either really awesome or really freaky". So, ya, now I sound like I’m trying to self-diagnose myself via one blog post and as a librarian I should probably no better (for one thing, i don’t have good skin, never did) but I do just want to say that I can relate, I know how generalized pain like this can totally disrupt life and I feel for you. I’m glad your physical therapist was able to give you some kind of explanation for it now at least


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