“I Never Knew 24/7 Pain Wasn’t Normal”: Ehlers-Danlos Patient Gets Diagnosis Late in Life

November 29, 2013

When I was a child, there was no internet. There were no smart phones. Very few people had computers in their homes, and even then, they usually had only one. What I’m saying is that this technology revolution happened just as I was entering adulthood. I’m 31 now, and we’ve seen rapid gains in technology since I was 21. Technology, though, was what got me my diagnosis. It was a friend online from California (I’m in Texas) who said my symptoms lined up with Ehlers-Danlos syndrome (EDS). She was right.

When I was a child, I hurt constantly. I lived on a ranch in the woods, and my mother just assumed I was weak. I began to think all the pain was normal, and maybe I just wasn’t tough. I’ve always had horrible gastrointestinal issues, as well, and I was always tired and weak. That would be the POTS.

I wasn’t diagnosed with EDS until I was 29 years old. I had a child when I was 20, and that pregnancy was what really amped up the POTS symptoms. But again, I thought it was normal (It wasn’t until I actively dislocated a joint purposely in front of one doctor that I even got a diagnosis for EDS. I’m not officially diagnosed with POTS, but I know I have it. Officially I’m diagnosed with dysautonomia). My gastroparesis and EDS were found after I delivered twins at 27. When I was pregnant with them, my hips would slide around funny, halfway out of their sockets. A couple of times, toward the end, they dislocated. At that point, I still didn’t know I had EDS. Once I figured out I did, I took tons of research to my doctors and they all “poopoo’d” it because I don’t have stretchy skin on my forearms. They were ignorant of the condition.

Since receiving a diagnosis, the ball has begun rolling and I’m beginning to get care. I’ve had five surgeries this year…all related to EDS. I have IV access at home. I have all the pain medication I need. None of that stuff was going on before I was diagnosed. People just threw Vicodin at me and told me it would take care of the pain. It didn’t.

I’m still having trouble with doctors thinking EDS is no big deal. Yes, it is important. It’s the cause of most of our (other EDSers and me) problems medically. I’m pretty happy now to have decent care most of the time.

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