Published: 28/07/2018


by Britney D.

I’ve had chronic pain all my life especially in my joints. In my family, you don’t talk about pain, if your knees hurt, well, it’s a long way from your heart. Crying gets your face wet. Doctors said when I was a kid I had growing pains. In high school, it was blamed on puberty. I was always very flexible, but I was very athletic so I just thought it was due to an active lifestyle.

Fast forward to college, I’m a division 1 athlete, a tennis player. For years I racked up a series of injuries, sprained ankles, fallen arches, and shin splints. I was wrapped up in ice bags everywhere and smelled like pain relief gel. Towards the end of the two seasons, I noticed my arms would go numb and weak randomly. It was hard to describe the pain because, well, I felt pain all the time. This was brushed off for years until one year I was almost paralyzed in both arms, and the athletic department finally took it seriously.

No one could figure out what was wrong. An MRI with contrast on my left shoulder showed loose joints. Nine months of intense physical therapy helped me get the use of my arms back. The orthopedic surgeon said I had loose joints and hyperelastic muscles and to stay away from activities where my limbs would be in a repetitive motion away from my core. I was 20.

That was the first major episode. My body parts fall in and out of place all the time. I’m the Rice Krispies cereal slogan of, “snap, crackle, and pop”. Pain is normal, so I really don’t complain much, but I recently had an SI joint displaced on my left side. I went to the chiropractor to straighten me out and my joints just kept moving. My hip was so off my right leg was shorter by inches then my left. Six-weeks of treatment to fix that made the pain in my SI joints worse and my legs feel heavy. Sometimes I can’t walk. This all occurred in November. The same thing that happened to my shoulders was now occurring in my legs.

I stand and walk in retail 40 hours a week, so working has been difficult, and I had to see quite a few doctors to rule out the main culprits. I’m seeing a rheumatologist soon for the formal diagnosis of EDS. The amount of anxiety and depression is tremendous.

I would love to help those with EDS understand that they are not crazy, their pain is real, and that they are the unsung heroes who wake up every day dealing with this chronic disease with no cure.



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