What My EDS Feels Like

Posted September 12, 2018

by Angela B.

I was diagnosed at 14 with EDS for a “violent football injury” that was from a happy split to my right knee. After a 6 week cast and arthroscopic surgery, all was well. Okay. Not.

I had multiple miscarriages (8) and three beautiful rainbow babies all C-sections. I had placenta previa with except for the last one. The placenta planted nice and high, but membranes rupture early. Born at 29 weeks, my last rainbow baby changed my career.

I worked with and in healthcare for 37 years, so I had access to excellent healthcare, except once I told them I had EDS, “I learned that in med school” was the common response. By age 52, two total hip replacements were needed for necrosis. By 54, I was on disability due in part to GI decompensation.

I work at keeping whatever mobility I can with gentle weight training and yoga. Still, in the last year, multiple subluxes remind me to enjoy when I have a good day.

I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises.

This is my daily experience even with the aid of pain meds. I can tell the weather. Any time the temperature goes below 40 degrees Fahrenheit, I know, as each joint tightens as if to recoil from the cold.

I am blessed that my medical team of physicians is open to my input, yet still, I have had to endure multiple hospitalizations. On my last admission, it took 25 sticks to insert one IV, and they were really trying.

Each day I learn and study every bit of information I can obtain. I now share much more with friends, though I see them much less. The progress of the Ehlers-Danlos Society has been a wealth of resources. Reality check though, each day is a struggle and a fight, but I am grateful.


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: