EDS & My Journey To Diagnosis

Ehlers-Danlos Syndrome (Also known as EDS) is a rare group of disorders that effect the collagen in one's body. I have the Hypermobile form of EDS (known as hEDS).

Some signs of EDS are:

  • joint hypermobility.
  • loose, unstable joints that dislocate easily.
  • joint pain and clicking joints.
  • extreme tiredness (fatigue)
  • skin that bruises easily.
  • digestive problems, such as heartburn and constipation.
  • dizziness and an increased heart rate after standing up.

Most EDS patients (known as Zebras) are diagnosed with other things before EDS is even thought of. Some doctors even outright dismiss a patients symptoms, some will be diagnosed as a hypochondriac. EDS does not show up in blood tests, x-rays, MRIs, CTs. Some people go years without a diagnosis. In my case I started visiting doctors for joint pain when I was 15. I was not diagnosed with EDS until I was 26. (For reference I will be 27 in Oct '22) Doctors called me crazy, one doctor even told me that I was too young to be having the symptoms so it must be in my head. I was starting to feel discouraged and believed that maybe it was in my head, until I met my now current Primary Care Doctor. He was an amazing advocate for me, he listened and believed me. He started me with physical therapy, but after 6 months with no improvement I felt more discouraged, I finally asked him if he would give me a referral to see a rheumatologist, he told me that he did not think it would help but he gave me the referral anyway. 

Two months later I finally got in to see the rheumatologist and he tested me with the Beighton Scale and I hit 7 of the 9 points (requirement is at least 5 point hit) I finally had an answer. Turns out I also had fibromyalgia. My primary doctor still isn't convinced about the EDS diagnosis, but he told me it was only because he was unfamiliar with the disorder. The next time I saw him he had done more research and while he still was unsure, he accepted the diagnosis. 

 EDS is a chronic illness and its also an invisible illness. We may look healthy but we put our brave faces on and continue about our day as best as we can.

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