Ehlers-Danlos Syndrome: What I’ve Learned

Emma Scofield, diagnosed with Ehlers-Danlos,stretches on floor

At the beginning of 2016, I was miserable. My family was on vacation in Colorado so that we could ski, something we’ve been doing since I was little. The second day we were skiing I fell and landed on my hip and the pain was unimaginable. I didn’t ski for the rest of the time we were in Colorado. Once I got over the initial pain of the fall, which only lasted a few days, I came down with an upper respiratory infection, because my body was so focused on the pain that it ignored my immune system.

This is a pattern that has been repeating itself since I was in the fourth grade. This year the pain became worse than it ever was before. I was out of school for countless days. I averaged two hours of sleep at night because the pain kept me up. I was falling asleep in class and having panic attacks at the thought of going into the crowded hallway. I was so afraid that I’d be bumped into. In short, I wasn’t really living. Because of this, I was recommended to enter the Functional Independence Restoration (FIRST) an inpatient program for chronic pain rehabilitation.

I have a condition called Ehlers-Danlos Syndrome (EDS), hypermobility type, a genetic disorder that affects connective tissue that I never truly understood until I came to the FIRST program. EDS affects the collagen in my cells. It causes the collagen to be slightly different which makes my joints a little bit looser so that they bend in ways that they really shouldn’t. The problem is, most people with EDS actually find the weird bendy ways of doing things much more comfortable. Over time, the repeated, overly flexible movements start to wear on the body, which causes pain and possibly injury. Another aspect of EDS is the tendency for different parts of my body to over react and over compensate. I’m mainly speaking about the autonomic nervous system (the system that controls things that we don’t have to think about: breathing, heartbeat, blood pressure, etc.) and the brain.

Because of these systems’ sensitivity and the tendency for EDS sufferers to move in ways that create pain, the perfect environment for chronic pain is created. Before the brain receives a signal that I’m in pain, it’s basically like I’m rolling up to the first big hill on a roller coaster. The pain is what tips me over the edge, and then suddenly I’m experiencing a lot of different sensations. It’s like my body is being hit by a truck and electrocuted at the same time. Seriously, there is pain from the tips of my ears, to the toenails on my pinky toe. After that, my autonomic nervous system goes out of control, acting like the cars behind the very first car on the roller coaster. My blood pressure goes out of control, I get heart pain, might have a dry mouth, and have quite a bit of anxiety. Sounds fun right? At first glance, these things seem uncontrollable and like they will ruin your life, but I learned how to gain the upper hand in the fight against pain.

When I first came to the FIRST program I thought of my body and my brain as two separate entities. I was angry at my body for betraying me. I remember times that I actually shouted at a limb for hurting me. One of the hardest things I had to do during my stay at the hospital was learning how to trust my body again. I learned that the most important thing I can do is recognize that everything is connected. My nerves aren’t the only thing responsible for pain. If that were true, relaxation techniques would have no effect, but they do. The easiest way for me to make the pain get better is to have a calm mind. I actually found that meditation is a really fun thing to do because my body over reacts. This sounds like it’s a bad thing, and in some ways it is; but it has the potential to be a very good thing. When your body and brain feel good, like when you meditate, you can feel like you’re floating. I learned that my body will also over react to the good stimuli.

Another thing that I had to learn was that the pain wasn’t keeping me from being active, it was my fear of the pain, or my lack of understanding of the pain. You see, when my nerves send the message to my brain that I need to be in pain, they’re not right. I’m actually in no danger of hurting myself. I’m getting a ‘not dangerous’ signal. When I don’t do something in response to that pain signal, I’m telling my brain that the signal was correct and in the future I will be more likely to respond to those signals. When I exercise through the pain, trust me when I say it gets easier to do, my body starts to differentiate between the dangerous and not dangerous signals. When I’ve done this, I learned that the non-dangerous signals become less and less and I can do more things than I could before.

It feels very odd for me to write this and remember the degree of pain I was in before I came to the FIRST program. Right now I’m on vacation and I’m doing things I haven’t done in years. Last year I had a panic attack on the bus because it was so crowded. I was seeing colors and almost passing out. The other day I was on a packed subway and it barely bothered me. Now I’m confident that I won’t let the pain control me. I just have to remember what I’ve learned: that I know better than my dramatic body and that the pain doesn’t control me, I do.

If you’d like to learn more about our Functional Independence Restoration (FIRST) inpatient program please contact us here; or our Connective Tissue Clinic, which treats Ehlers-Danlos syndrome, contact us here.
Emma Scofield

About the Author: Emma Scofield

Emma Scofield is a sixteen-year-old junior in high school. When she goes to college, she hopes to study psychology. She was diagnosed with Ehlers-Danlos Syndrome in March 2014. Emma enjoys reading and spending time with her friends.

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Comments

  1. Elizabeth July 14, 20:57
    We are actually currently in the program with my 11 year old. It is such an amazing program!
  2. Gail July 15, 02:20
    Thank you Emma! I have EDS hypermobility too. But I'm 57 and I was just diagnosed 4 months ago. Everything you said in your blog above totally makes sense. I was misdiagnosed for 10 years and some of the things you mentioned were the very things I learned about pain, but you put it all together. Thank you! We can enjoy life! The right treatment helps so much!
    • Kcesarz August 19, 18:05
      I am just going to be turning 30 and have finally gotten a diagnosis. For years I shuffled from Doctor to Doctor for different issues because I always had something going on. It's been a long tough journey. I had forgotten the pain as a child until I read your post. It's nice to have a diagnosis