Tag Archive: pain management

taffy standing on the beach with her arms out

I may be in pain, but I am determined

I didn’t know I had hypermobile Ehlers-Danlos syndrome (hEDS) until age 26. I was born with congenital cardiac defects, and as a child everyone called me “double-jointed.”  I was a very sports-involved tomboy covered in bruises, ace bandages, and casts, and suffered dislocations, ligament and tendon tears, sprains, and strains. I was always fainting with […]
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Yamini's story

The hardest part is learning what my body can cope with

Adjusting expectations of myself has been the hardest part of coping with EDS. Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the […]
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Dana's story

I’ve spent the past two years rediscovering myself

TW: Contains mention of suicide. I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant […]
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My strength is my superpower

I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In […]
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My life changed the day I saw a pain management doctor

Today, I spent hours on the phone with the pharmacy about a single prescription. This particular prescription has been problematic ever since my doctor first gave it to me. My insurance company has refused to cover it, my pharmacy fights with me every month about it, and I am ashamed to tell people that I […]
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How bias and a lack of access to healthcare impacts EDS patients of African descent

For years, I was told by my doctors that I was healthy, and I certainly tried to be. I exercised regularly, ate a balanced diet, didn’t smoke, and only drank occasionally. However despite all this, I didn’t feel healthy. For five years, I had been experiencing migraines, weight loss, nerve pain, chronic pain, loss of appetite, fatigue, hair loss, gastrointestinal, urological and […]
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My University Goal

I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who […]
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