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by Michelle L.
I had some “growing pains’ as a teenager and my mom called me “Snap, Crackle, & Pop” because of all my joint clicks and cracks. I saw rheumatologists and was told over and over – there’s something wrong but we don’t know what. I was told eventually I would probably test positive for rheumatoid arthritis. I even tried to join the military, but my rheumatologist wrote me a note saying my joints couldn’t handle it and I never left for basic training.
My real symptoms started when I was 27 and my shoulder ached. I went and got an xray and was shocked when the walk-in doctor told me it was dislocated. I thought I was cracking my shoulder when I was really popping it back into place. I had surgery.
That was my story over the next 20 years. A second shoulder surgery (doctor told me it was the worst shoulder he’s ever seen, wouldn’t touch me, and sent me to a specialty hospital), two hip surgeries, gynecological problems, more rheumatologists, but no one connected the dots.
At 42, I started to run to strengthen my legs to support my hips & joints. I did a few 5K races which I was so proud of since I was never athletic. I found out I need a third hip surgery so I started to swim to stay active and strengthen my body. My son told me to get a bike and do a triathlon. So I did! I was so proud and thought I was helping strengthen my body. Swimming is so good for you, right?
Until last summer when I tore my bicep tendon (on my ‘good shoulder’) on a casual swim. I needed surgery. Excessive scar tissue landed me in surgery #2 on my shoulder (12 total surgeries at this point!) The doctor held my hand and apologized for not taking my medical history seriously. He said he should’ve listened to me better when I said something was wrong. It was nice to be validated and have my voice heard.
At that point, my knees started acting up. Doctors didn’t know why. I had more tears but it didn’t explain the pain. More rheumatologists. More steroids. Still no answers. Somewhere along the line I was in PT and the therapist told me about EDS. I ignored it, but it was in the back of my mind.
Earlier this year – at age 47 – I saw a geneticist and a osteopathic doctor and one told me I have HSD-P and other told me it was EDS. I was told to stop swimming, biking, running. I am devastated to quit triathlon, but the pain and risk of injury is just too much. I need to preserve what I have left. I’ve been having problems with my wrists for a few years. Saw a third wrist doctor and he told me that it’s carpal tunnel and refused to give me an MRI. He dismissed my EDS diagnosis. I saw a fourth wrist doctor, got the MRI, and found three separate injuries in my wrist. He operated on the carpal tunnel, and we are hoping the other tears will heal on its own. I just had surgery #13.
Now with my diagnosis, I understand how I delivered both of my kids in under two hours. Other medical issues make sense now. I’m lucky that I have a mild case, but it is still difficult. The future is scary. I can’t exercise to lose the weight from the steroids (I also have PCOS). How will this progress? How can people understand my constant pain? How can people understand that my hip just gives out for no reason? How do I get people to stop telling me I need to be wrapped in bubble wrap? People still don’t understand, and that’s the hardest part.
People say, “hopefully this is your last surgery,” but it’s hard because I know it’s not. I know there will be more. It’s just a matter of time waiting for the next tear or dislocation.
It is wonderful that people will be made aware of EDS and help those who suffer be understood, heard, and accepted.
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