Diagnosing Myself When Doctor's Could Not
When I was growing up, I thought I was a fairly typical child. Sure, I had my “things,” but so did other children. My legs would hurt sometimes in the middle of the night; the doctors told my mom to give me Advil and it “fixed” that problem. Sometimes I would wake up with my neck stuck in one position, we’d rush to the doctor for him to pull my head up painfully until there was a “pop.” Then more Advil. I got stomach bugs regularly and motion sick easily. We used to say that a car wasn’t ours until I had thrown up.
Writing down all those little things in succession, you might wonder why we didn’t suspect something sooner, but in the end, they were just little things. My mom had weird allergies and various chronic pain her whole life and nothing ever came of it. We expected the same for me. We never could’ve guessed that my cat allergies, stomach flus, joint pain, and headaches would turn into the monsters they are today.
When I hit puberty, I finally realized something wasn’t right. I tired so much faster than my friends, and constantly struggled with wrist pain, falling when I would try to run, and I had appetite issues. At first, I told myself I was just anorexic and I wasn’t hungry because I wanted to be skinny. I wanted it to be a problem I could fix on my own. Then I said I was having pain cause I didn’t exercise enough, but attempting to do yoga or running only resulted in worse pain. Eventually I walked around with my hands balled into fists, too weak to open bottles or hold a pen. Sometimes the pain was so bad I would do anything to stop it, I’d hit my hand against a surface just for a different sensation, stick my arms in ice water up to my elbows, but mostly I would pop and crack and twist all those little joints.
I spent years being told by doctors that nothing was wrong. They would run tests, but the tests were always normal. So we heard every excuse. I was told it was fibromylagia, then anxiety, that I had whiplash from a rollercoaster ride. I was just cracking my knuckles. I was only having chronic pain because I was too focused on my body and I just needed to stop thinking about it. One doctor agreed something was going on but told us he couldn’t help us and that it would likely take us nearly 7 years to find answers. He said to just live with it.
I was given antidepressants, way too many NSAIDs, and variations of the like, often developing unexplained “side effects” that would make me stop taking the medication. After one such incident a doctor told me I couldn’t possibly not tolerate that medication because they even gave it to babies. Clearly I was just beyond help. All the while, things were getting worse. The pain was something I felt I couldn’t escape. I wanted to give up and stop trying to find help from doctors who clearly didn’t care, but I also wanted my body back.
After falling and injuring my knee, I ended up in a wheelchair. With hands too injured to push myself or use crutches, I had to face the reality that this wasn’t going away. So I turned to my last hope - the Internet. I read countless medical articles, I researched so many conditions I lost track, and I learned more medical terms than anyone should ever have to know but eventually I put together the puzzle of my body.
I found a doctor that specialized in the condition I thought I had, and we made an appointment.
After 17 years of unexplained pain, allergies, stomach problems, anxiety, sleep issues, muscle injuries, and a multitude of other incidences, we finally had a diagnosis. Ehlers Danlos Syndrome. It wasn’t the answer to all my problems, but it was a start, and it was like finally glimpsing a star after years of cloud-filled night skies.
I am 21 years old now and I am much sicker than I was at 17. I can’t walk due to what we suspect is a combination of spinal cord injury and ongoing undiagnosed muscular and nerve damage. I have developed severe allergies, experiencing my first life threatening anaphylactic episode just a few short years after being diagnosed with EDS. I am now allergic to all food and unable to eat anything by mouth, dependent on a feeding tube that pumps hypoallergenic nutrition into my small intestine 20 hours a day. I have been diagnosed with Mastoctytosis and HyperPOTS, two rare and extremely difficult to control conditions.
We are still on the slow journey of finding out what went wrong in my body. We have come to realize that some of my conditions are genetic, which worked against me as a child when others in my family lived with similar, but less severe, symptoms.
Looking back, I can’t believe so much has changed. However, I am also extremely grateful. I am grateful that I was born in an age where I could go online and help myself find a good doctor, where medical science has advanced enough to keep even my complex body alive, and where I have found an amazing and supportive community of others like me online.