Hypermobility Syndrome

I’ve been suspecting there was something more going on with my body ever since the dramatic failure of my running career this spring.  I had constant pain in my feet, and by the time I quit, I felt like I had two sprained ankles.  The last run I took, I had intended to do eight or nine miles, as I recall.  I turned around in less than one.  In fact, I think I had only been actually running for a few hundred feet before I had to turn around and limp home, because it felt like something had snapped in one ankle.  I had also developed hip pain that felt like bursitis.

So I quit running.  I felt awful.  I had paid over a hundred dollars to sign up for the Lansing Marathon, committing myself, because there are no refunds there.  I really enjoyed learning how to run.  I felt strong, capable, and powerful.  I learned how to exercise, how to push myself.  I was doing something I never thought I’d be able to do.  And suddenly, I was benched.

I still hoped I’d be able to start again.  I thought I’d just pushed myself too hard, even though I was following a novice marathon training plan after running for almost two years.  I was showing signs of overtraining, with my heart rate climbing and my paces dropping, and I figured that was it, I just needed to take it slower.  I thought I could just wait a month or two, wait for the pain to go away, and then I could start again, and maybe try for the 2014 marathon instead.

I waited.  And I waited.  And I waited.  And nothing was getting better.  My last run was March 3.  By May, I still felt like I had two sprained ankles, and I felt almost like I’d forgotten how to walk.  Every step took careful thought and planning, and it still hurt like hell.

I’ve had a fibromyalgia diagnosis for eight years now.  Pain comes with the fibro territory.  But fibromyalgia alone could not explain this.  The injuries and the slow healing, combined with the feeling I’d always had that I didn’t quite fit in with other fibros, got me to thinking that something else must be going on.

About that time, I found out that a friend had been diagnosed with hypermobility syndrome, a type of connective tissue disorder.  When I looked into this disorder, it was like reading off a list of all the really strange, bizarre things in my health history that I’d always just ignored.  Anesthesia resistance and rapid resolution, resistance to pain killers.  Loving salty foods.  Many sprained wrists and ankles as a child.  Being able to crack my ankles.  Heart palpitations.  Nearly passing out if I stood up too fast.  Being covered in stretch marks, some places with cross-hatching stretch marks. Keratosis pilari, little bumps all over the backs of my arms. Severe nearsightedness.  Poor healing, surgical wounds that came back open on their own.  Incompetent cervix.  Being able to disengage my Herbst appliance in fourth grade.  Being able to squat like a bushman.  Constant headaches.  Tendon and nerve problems starting in my teens. Abdominal hernia. Pelvic prolapse. Hips with a “bump” in them.  Shoulders that creak. Cold feet, and fingers that turn white when it’s only 40 degrees out. Lifelong back pain. Easy bruising, petechiae, low platelets, a tendency to bleed out in surgery. Mitral valve heart murmur, an irregular heartbeat. Flat feet. Crazy heavy periods and postpartum bleeding. Prematurely thinning skin. Jaw pain so bad I can’t even chew gum anymore.  Frequent sores in my mouth.

Most importantly, seeing many of these things, and more, in my mother, my uncles, my grandmother…

…And my children.

I’ve tried to keep this relatively quiet, because I had to wait so long to see the doctor.  I didn’t want to jump on a self-diagnosis with something like this.  I expected to have to wait until September for my first appointment, but last week I got a phone call giving me an appointment on Monday morning.

I spent almost 4 hours in the office, most of it with the doctor herself.  To my utter shock and surprise, she not only confirmed what I suspected, she showed me even more ways in which the disorder causes physical symptoms, things I hadn’t yet connected the dots on.  She spent so much time discussing my history and examining me, measuring the angles of my joints, listening to my creaks and pops as I did things that I take for granted that apparently I shouldn’t, like squatting, sitting cross-legged on a table and being more comfortable that way, bending my fingers backwards.  I had never considered myself to be “double-jointed;” that was for cheerleaders and athletic types, not myself, the bookworm geek who couldn’t even run a mile in junior high, who never did a sit-up or a push-up in her life until last year.  I thought “sprain” was just another term for, “You didn’t break anything, so stop whining and get back out there.”

I left with even more information on hypermobility syndrome than I had found before, and the office drew a ton of labs and took x-rays of my back, my hips, my knees, and my feet, the places that hurt, creak, and pop the most right now.  In two weeks, once all the tests, including another ECG, are back in, I will return to go over everything with the doctor and make a game plan of sorts. She already confirmed my worries about my kids, and was concerned at hearing that my oldest wanted to go out for wrestling.   I’ll have to get all of them checked out now, and keep an eye on them.

At least I know now to support them and believe them when they complain of pain, aches, sprains, joints that hurt, instead of telling them that it’s normal just because it happened to me, too.

Meanwhile, my brain has to deal with reprogramming itself.  I never should have run in the first place, although I enjoyed it and I will miss it.  I need to start paying attention when my joints hurt, instead of trying to ignore them.

I have to accept that I will not be able to keep up with the guys.

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About solinox

I am a Wiccan priestess, a libertarian mother of triplets plus three, a wife and homeschooling mom to blind and autistic children, a fiber artist, and a Jane of All Trades, always learning and seeking to help.

4 thoughts on “Hypermobility Syndrome

  1. I am so glad you have answers and now like me you can reprogram your brain to understand your body. 🙂 who did you go see? Beals is my Dr and she’s phenomenal.

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