Since I was young I had issues with joint pain, we mostly overlooked them due to me being young and still growing, and because my Crohn’s had always been the main issue, but over the years it got worse. Seeing as how Crohn’s and JRA were often linked, my GI put me on celebrex and wrote it off as arthritis. But since I couldn’t stay on Celebrex due to the risk of GI bleeds I was left with joint pain, I often used a cane to get around on bad days or if it was some place that was going to require a lot of walking, my mom would push me around in a wheelchair.
With my Crohn’s being more under control, it gave us the opportunity to try to take care of my other issues to try to allow me to have the best quality of life I can. They sent me to a rheumatologist. It was quite nerve wrecking to be in a room mostly filled with the elderly. I was afraid he wouldn’t take me seriously. Instead he was extremely nice, he felt around on my joints, pulled at some skin on the inside of my wrist and then asked me if I could do some things. He didn’t tell me what they were, it was only afterwards that my friend Ari told me that the things he had asked me to do were the Beighton Score test.
I scored a 9/9 on it in which case he told me I had joint hypermobility syndrome, that my joint pain was caused by subluxations and dislocations and he popped my hip back into place for me and then said that he couldn’t run any tests to test for anything else since he was retiring at the end of the year but to bring it up with my doctor about Ehlers Danlos Syndrome. Admittedly I had heard of it before due to having a few friends across the country with it, but I knew nothing of it and honestly didn’t think it made any sense for me. So I began to look it up so that I knew what I was talking about when I brought it up with my doctors. It seemed like a long shot because I didn’t think it made much sense but the more I looked into it, the more it did make sense.
I noticed I had a lot of things that they mentioned were common with EDS: Crohn’s (with constipation, not diarrhea minus the C. Diff fiasco), Gastroparesis, Malnutrition, dizziness (with fainting spells), easy bruising (I have photos and examples), in the past I have also had low vitamin D, onset gum disease, along with chronic pain and fatigue, and of course the thing that brought me to it all: joint hypermobility syndrome.
I read that EDS can cause inflammation in the GI tract and dysmotility and I wondered if it could’ve caused even my Crohn’s and had just been overlooked when I was little due to the fact that I was extremely flexible as a child which was normal for children. EDS could also cause hernias and tears which made me think of my umbilical hernia for no reason in the 5th grade and I wondered if the reason I got fistulas was because my intestines were torn easily. I began to feel a bit like Sherlock trying to put pieces together. Even now I will sometimes mention a random thing to someone like how I once gave myself copper poisoning while working with copper wire because it absorbed through my skin easily and they told me that could be an EDS thing.
The thing that really convinced me though that there might be a connection was that my dad being almost 50 was able to do all of the beighton scale himself, he has issues with his joints, and while he swears his fingers are screwed up from playing basketball I actually discovered that what is up with his fingers is called swan neck deformity, which is also an EDS trait.
I first brought it up to my primary but since it was considered a rare disease I figured it would be written off immediately but instead she was actually extremely intrigued and said it would make sense and told me to mention it to my specialists in Cincinnati. I was headed up there on the 8th for my gastroparesis procedure so I decided to write a paper to get all my information on it and give it to my doctor, since I would only see him briefly before they knocked me out for my procedure.
And with that I prepared for another step forward in maybe making my life easier. My rheumatologist was right, braces really did help with the pain, they became my new best friend as I hardly had any wrist pain when I wore my braces (minus a few times I accidentally dislocated my wrist trying to take off my shirt to bathe). Hip braces, ankle braces, they all made things so much easier and I never would have expected it because all my life I had been told it was probably arthritis related to the Crohn’s disease.
By the 8th I had everything I needed to know, I had connected all the links I could and prepared for my procedure. And for my second semester of college.