Cincinnati Children's Blog

I May Have Complex Regional Pain Syndrome, But It Doesn’t Have Me

I May Have Complex Regional Pain Syndrome, But It Doesn’t Have Me

Someone once told me if you love something, you should keep it close to you. This is what running does for me. Since middle school, running has been one of my biggest passions. I loved being able to go out on a run and forget about all of my worries. In high school I was a successful runner. I consistently came in the top 10 in races and at my peak was running a 5k in under 20 minutes. In my junior year of high school, my calves began to hurt and my feet began to feel numb.

A local doctor told me I had compartment syndrome in both of my calves. In both calves there are four compartments that hold muscle, and around those muscles are fascia. My fascia was too thick, which cut off my blood flow and nerves. It’s like having two pounds of meat in a one pound bag. I thought having surgery would help me, and it did solve the problem at hand. However, little did I know what I was in for…

2 surgeries, 9 scars and 4 drain holes later I was in more pain than I could ever imagine. My legs constantly burned. They turned weird shades of purple and red. Riding in a car from the vibrations was torture. This is when Dr. Goldschneider at Cincinnati Children’s diagnosed me with CRPS, also known as complex regional pain syndrome.

CRPS is a rare condition where my brain and sympathetic nerves are telling me my legs are hurt, even though they aren’t newly injured. They told me that a cure is possible, but can be very hard to achieve sometimes. I am working hard every day to hopefully reach remission. I was also diagnosed with fibromyalgia, widespread pain, and dysautonomia, a malfunction of the autonomic nervous system. My doctors immediately started me on physical therapy, medication and pain psychology appointments, but the one thing that truly saved me and kept me sane was my passion for running. Running taught me that when the going gets tough, you just keep going.

I have competed in the Cincinnati Flying Pig Marathon every year since the seventh grade, and I am now a freshman at the University of Cincinnati. The Flying Pig is my favorite weekend of the year, and it never ceases to amaze me how the whole city comes together to cheer on all of the walkers and runners. The energy is contagious, and this is why I have run the 5k two times, the female relay four times, and will be competing in the half marathon and 5k this year. My training has changed from when I was healthy to after my CRPS diagnosis, but I continue to stay hopeful that one day I will be able to return to my healthy state.

Before my surgeries and diagnosis, I trained with my cross country and track teams at Anderson High School. These workouts varied day to day, but most weeks we had a distance day, hill day, repeat day, recovery day and a hard workout day. I was in the best shape of my life, and I loved how I was constantly improving every year. I felt good every day, and the only time I felt “pain” was after a really hard work out, and the pain would subside shortly after.

Then came my CRPS, fibromyalgia and dysautonomia diagnoses. Running with chronic pain is hard but rewarding. In order to prevent flares — an increase in pain — I have had to learn to pace myself and not over work myself. I constantly struggle with the fact that I have invisible illnesses that make me look perfectly healthy even though I am not. I have to take everything day by day to see how I am feeling. Some days I feel fine, and some days I find it hard to even get out of bed. Training for the half marathon, I have tried to run five miles, 5 days a week and one long run a week. I have completed most of my five-mile runs at the gym, so if I start to feel an increase in pain, I can just hop off of the treadmill. For long runs, my dad comes down to Clifton and runs with me outside.

I was used to winning or coming close to it. I came in second in the flying pig 5k one year, and my relay team, Four Pigs in a Pod, won three out of the four Pig relays we ran. Since being diagnosed with various chronic pain conditions, I have come to realize winning isn’t just actually winning. It’s getting out the door. It’s getting to run a mile even when you don’t feel well. It’s getting to run the Flying Pig Half Marathon and spread CRPS awareness to everyone running and cheering. Winning is living with CRPS, but not letting it define your life. I may have CRPS, but it sure doesn’t have me.

Write a Comment