Tag Archive: Pain

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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The emotional toll of being doubted

In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have excruciating pain in my back. I went to physical therapy and was told it was normal.  At 36, I had my first spinal surgery, a […]
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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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I didn’t want to be treated differently

I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I […]
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Discovering my own diagnosis

I’m Ashley, 34 years old from Canada and living with hEDS, PoTS, gastroparesis, mast cell, and all the lovely things that come with EDS. My story is lifelong and has been physically and mentally draining. As a child I had many EDS traits that caused me problems, but I did not know at the time […]
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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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I did not get answers until I advocated for myself

Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s […]
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EDS – A Pain in the..…Everything

I’m Sonia, I’m 48 years old and recently diagnosed with hEDS. I recently had to resign from a job I loved. My story is a description of pain, in the hope that others who also haven’t found effective management can relate. It’s possible I began experiencing pain before I was old enough to remember or […]
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My pain management journey

Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, I […]
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