Hello everyone! I’m sorry I have been missing for a while. I have been catching illness after illness, and I’m still not feeling great! I’m supposed to just rest for a few days, though, so I thought I’d catch up on here. 🙂
While I was away, I had a very important doctor appointment.
About 6 months to a year before my diagnosis of Celiac Disease, I started having knee pain after exercising. I would go on a hike, and when I got home my knees would be red, swollen, and hurt to move. I always just thought I had pushed myself too hard or that I had pulled something. As time wore on, my knees started to bother me with less and less activity. Even my short marching rehearsals hurt my knees. I never went to the doctor for it because I felt that I was just weak or too inactive.
This summer, other parts started hurting, and not just from exercise. I would sit at home all day relaxing and have shooting and dull aches in my wrists, back, and legs. It was annoying, but really didn’t seem to cause many problems. None of the pain medicine worked, so I just learned to deal with it.
As the marching season approached, and I started worrying about the pain of exercising, I decided to go to the doctor just to see what he would say. This led to over 20 different blood tests, x-rays, and ultrasounds, but everything came back normal. I was referred to a rheumatologist, who tested me for things like arthritis and lupus, but those were normal too. No one could find an answer, and I was sick of all of the testing.
As I was taking a break from homework just a couple weeks ago, I remembered my rheumatologist asking me if I was overly flexible. I told her that I wasn’t because I had never tried to impress or shock my friends with flexibility. She sparked my curiosity, though, and after researching it a bunch, I discovered that I was definitely hypermobile. After researching hypermobility, I found a medical condition called Ehlers Danlos Syndrome.
All of the symptoms and characteristics described me, and once I read about it, I knew that’s what was wrong. I booked an appointment with my rheumatologist, and she confirmed the diagnosis.
I have Ehlers Danlos Syndrome-Hypermobility Type.
The good news: it’s not life threatening.
The bad news: there’s no cure, just management.
It’s a lifetime of pain and uncomfortable symptoms, but now that I know what it is, I can start to treat myself correctly.
If you don’t know what Ehlers Danlos Syndrome is, don’t worry. I didn’t either! You can read about it here and here. It is a multi systemic disorder that affects every part of the body because the collagen (most abundant protein in the body) is defective. Defective and weak collagen leads to lax (super stretchy) joints, which leads to pain due to overcompensation. There are numerous other symptoms, which I experience as well, but I would be writing for hours just to explain them all.
I was excited to finally have a name for what I experience every day, even though it means that I can’t be “fixed”. I’m grateful for the doctor and physical therapist that I have and for my extremely understanding friends and professors. It’s scary to think that I might someday have pain bad enough to need a wheelchair, but for now, I’m just going to focus on today.
I’m obviously still learning about the syndrome and myself! I don’t know when to take it easy because just a few years ago, I could do anything! Now my abilities change every day, and sometimes, I push too hard.
I am really hesitant to post this because it is a little more personal, but I hope to find some other zebras out there who know what it’s like! If you are reading and have EDS as well, please fill out the contact information! I would love to talk to you! I need some advice and someone who really understands. And if you don’t have EDS, but are curious about my symptoms or the syndrome itself, contact me too!
Thanks for reading, and I’ll be back to the recipe posts in no time. 🙂