I wish someone had connected the dots sooner

Posted August 23, 2019

My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got older however, each year came with more problems.

By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) developed. At 12, the start of chronic migraines, at 13, severe eczema and skin allergies, at 14, my subluxations and sprains were so common I didn’t know it wasn’t normal. By age 15 I had chronic joint pain: at age 16 I was tested for Rheumatoid Arthritis, and it was negative.

I was told I was having “psychosomatic” symptoms, a fancy way of saying “I don’t believe you”. By the end of age 17, I couldn’t exercise without fainting or getting bloody noses, though I tried. But then I turned 18, and I had frequent minor illnesses over and over. The moment that changed everything was when my physical therapist was doing her initial exam, she was feeling my joints in my arms on both sides, trying to get a feel for what was my ‘normal’. She put her hand on my right shoulder and proclaimed, “ Your shoulder isn’t in place, doesn’t that hurt?” I shrugged: “My joints always hurt, all of them, all the time, that shoulder gets used a lot so it hurts more.” She looked at me, wide-eyed. “Your shoulder is subluxated, we need to get it back in place” and my response was to “crack” my shoulder, though it’s more of a grinding noise. She felt it again, and informed me that it was back in place. She questioned why it might have subluxated, asking about injuries and if it happened with my sprain, I told her it’s always done that, and if that’s what a subluxation is, then my knees, wrists, ankles, hips, and jaw do that too. I asked her if it was normal, she said no.

She told me I had a connective tissue disorder and asked if I had other health issues: I almost laughed because I have so many I’ve lost count. She told me I should research more on the disorder and that’s when I found out about Ehlers-Danlos syndrome (EDS) and hypermobility. I was diagnosed a few months later and I was told that I have HSD, and I have POTS most likely as well (appointment for [hopefully] diagnosis next month!), which would explain many of my issues.

I wish I had known sooner. I now use a cane most of the time, besides for really bad times, then I use a wheelchair or stay in bed. The best part of my diagnosis is the understanding that I got from finally knowing what’s happening in my body, and being able to build a community with fellow zebras and know that I’m not alone. If you can’t connect the issues, think connective tissues!

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