Posted July 30, 2018

by Hilary S.

I’ve always been hypermobile, had issues with my digestive system, joint pain, and many other symptoms very common with EDS, but I wasn’t diagnosed with any issues until after I was in a skydiving accident. Because of EDS, and how it affects the connective tissue, I was more susceptible to nerve disorders. This accident caused a painful nerve disorder called Reflex Sympathetic Dystrophy to spread from a toe to my entire body. I was wheelchair bound, with pain and inflammation so extreme that I couldn’t even walk or stand on my own. I quickly gained a lot of weight and was over 330 lbs. I kind of gave up.

About a year after I was stuck in the chair, I decided I didn’t want to hear my doctors tell me I couldn’t walk anymore. I was going to learn how to rock climb. So I got into physical therapy and cut all inflammatory foods out of my diet. I managed to lose 200 lbs, and learned to not only hike and rock climb, but to actually become a fitness instructor working with others who have disabilities.

Unfortunately, as is true with the nature of EDS and RSD, my pain and inflammation cycles in and out and I had to have surgeries as I started losing feeling other than the pain. I’ve had hundreds of nerve blocks and 2 spinal cord stimulators implanted to help with pain and functionality. So my weight fluctuates. That’s a struggle I hear time and time again from my clients who also have connective tissue syndromes, which sucks.

But because I’ve been fighting for what I want and need, I’m fully functional and able to help others, and life is beautiful. I love helping people on bedrest find small ways to be able to move their bodies again, or even just when I share my stories of my struggles.

Every time someone says my story has helped them, it makes my pain easier to deal with.

I’d be honored to be able to share my story of all my ups and downs, and hopefully be able to reach more people than I’m able to with just my social media pages. Thank you for taking the time to read my story.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

Do you have a story to tell? Share it with us!

Categorized in: