Published: 23/05/2019

Dancing with the pain of hypermobility spectrum disorder

By Elizabeth C.

My whole life I thought I was “double jointed” because I could bend my fingers/thumbs backward. Although I have always danced, I was never super flexible.

As I got older I started to have some difficulties with my feet and knees, but nothing that significantly impacted my life. The more I danced, stretched, and pushed myself, especially in the last two years, I noticed how much more fatigued I felt afterward even though I thought I was getting better and stronger. I had some minor injuries and my feet were always causing problems and discomfort, but I thought I just had flat feet and tight hips.

It got progressively worse, and I couldn’t stand for more than 5 or 10 minutes without my knees aching. After dancing for an hour, I felt like collapsing to the ground. I felt weak; in widespread, aching pain.

When I tried to dance, I felt like jello and, try as I might, my muscles barely seemed to be working. Sometimes I was physically unable to feel my legs and feet at the end of the night.

I couldn’t understand what was going on, why as an active 17-year-old I often felt like I was 90. Most days I was barely able to get out of bed and ready for school. Multiple doctors ran pretty much every test, from bloodwork, to ultrasound, to MRI. They all came back clear.

I decided to have surgery on my right foot hoping it would fix the misalignment and force my body to rest and recover from the “overuse”, as my doctors called it. However, 6 months later when I should have been fully healed, I was in pain again. My surgeon realized that the ligaments in my foot were so loose that they had allowed the bones to shift out of place again. So, I had another surgery, adding three more screws to anchor the bones in my foot.

Each surgery required 3 months for a full recovery, so it’s been an entire year of recovery on top of the year of pain and suffering I endured before my first procedure. Thanks to my podiatrist and rheumatologist, I was finally diagnosed with a hypermobility spectrum disorder (HSD) in December 2018.

The more I researched, the more everything made sense, and all of my symptoms came together. I now know why those last few months of dance were so unbearable and the recital was incredibly difficult to get through, even with all of the painkillers I was taking. I know why a simple trip to the mall causes my joints and back to ache, and why I often can’t sleep at night due to foot pain, body stiffness, and extra adrenaline.

There’s so much more I have learned, and I am grateful for the resources I have found. But these conditions come in many forms and there is still so little awareness and knowledge, which is why it took an entire year of suffering to reach a diagnosis. I would have done many things differently and had a much more hopeful and informed outlook if I had known what I was dealing with. It’ll take time and hard work to get back to living a pain-free life, but it is somewhat comforting to know there is a legitimate reason for your pain and how to control it.



Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Stories

View all Stories

Sign up to The Ehlers-Danlos Society mailing list