The impact of my diagnosis

Posted September 6, 2018

by Christina M.

I was diagnosed with joint hypermobility syndrome at age 25, over ten years after I’d begun having frequent musculoskeletal injuries and chronic joint pain. I’d been misdiagnosed with juvenile rheumatoid arthritis, Sjogren’s, fibromyalgia, depression, ‘growing pains’, and passed off as a hypochondriac by multiple rheumatologists. It was actually an orthopedist that saw me when I was 14, after I managed to dislocate my shoulder just by having someone knock into me, that first mentioned Ehlers-Danlos.

At that time, my mother didn’t think anything of the suggestion; we had never heard of it. I googled it when I got home from the doctor’s office and the symptoms seemed to fit but no other doctor ever mentioned joint hypermobility or EDS. Whenever I brought up my own theories from self-research to physicians, it was completely dismissed as implausible and exaggerated.

One time, when I was having severe wrist pain, my pediatrician told me I couldn’t possibly have carpal tunnel syndrome because I was too young (Yet I did. Multiple times). A pediatric rheumatologist did state once that I was hypermobile and very flexible but didn’t explain what that looked like, what it meant for my life, or how to cope. I just had two quick appointments and was passed off to adult rheumatology, who started discussing rheumatoid arthritis and never mentioned hypermobility again.

I finally came full circle, after moving cities, to a specialist in pediatric rheumatology (although I was age 25 now), sent there by another rheumatologist that immediately dismissed me as hopeless because he couldn’t get an easy diagnosis. This specialist immediately pegged me for EDS or Marfan’s as soon as he heard my history and examined my body type. After more testing, he settled on hypermobile EDS.

The significance this has had for my life is huge. It is a relief to have all my weird injuries and symptoms explained.

I’ve been able to stop the medications that had been prescribed for other misdiagnoses. I’ve been to physical therapy and been able to tell them I have hypermobility so they could prescribe appropriate exercises and understand my condition, For example, I can already hit the endpoint in most stretches, and I can only do certain kinds of exercises to not stress my joints.

The specialist told me my rock climbing hobby was actually good therapy for me and I should continue. I had been so worried that the joint pain I had when I exercised and climbed meant I was injuring my joints but it was actually good for them and helping to strengthen and stabilize them. I have much less anxiety about my health condition now. When I have joint pain, back pain, or neck pain, I know its ‘just’ my EDS and how to deal with it properly. I’ve been able to find this EDS online community to talk about coping strategies, self-care techniques and items, and just vent.


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