Katherine, Complex Regional Pain Syndrome (CRPS)

My name is Katherine MacGregor and I am 18 years old. I have a rare, chronic disease known as complex regional pain syndrome, or CRPS. CRPS affects nerves from complications of surgery or an injury that never healed correctly.

For me, I had an injury in 2014 from dance, and it didn’t heal the way it was supposed to. Gradually the pain got worse instead of better. I was taken back to the doctor for more x-rays and MRI’s but nothing was showing up. I became hyper-sensitive to touch, and the pain moved from my ankle up my leg. The pain feels hot as fire but to the touch is cold as ice.  At one point I was in a wheelchair and lost the ability to walk and the strength in my arms. I wasn’t able to participate in activities at school and lost many friends.

Even at age 14 I still knew my body was not feeling right and that it was not just in my head. It hurt me deeply when others did not believe me about my pain and agony. I closed myself in this tight little private bubble, and enclosed my feelings and emotions. I was not receiving any help for all the pain I was in. But being so young made it that much harder to speak up and stand up for myself.

I saw a new doctor who first ruled out different types of cancer. I thought, “What could be worse than cancer?” Then he told me I had CRPS. He gave me and my parents the rundown on what it is, how I got it, and what the symptoms are. He said that not a lot of doctors know about CRPS because it is so rare and that is why I didn’t receive the help that I needed. Then he told us about care and treatment options.

With therapy and treatment, my pain level was reduced from a 7 to a 5, which was good for me.  As my strength improved and pain decreased, I was able to return to school for a couple hours at a time. Counseling became vital to learning how to deal with my feelings about this lifelong illness. I also attended a 4-week program at Children’s Hospital of Philadelphia that included physical, occupational, music and art therapy each day. The program helped to retrain my brain for functional daily living with chronic pain.I now have a service dog, Finnegan. Children’s Miracle Network paid for Finnegan’s training and he has become a vital part of my daily routine at home.  He sits next to me on the couch when I am having pseudo-seizure, or when I am simply in pain. Finnegan has not only helped me but my father as well. My father developed PTSD from military deployments to Afghanistan, Iraq and Somalia and having Finnegan has aided in his recovery, too.

CMN has been a large part throughout my healing process, helping with Finnegan and staying in touch with me and my progress. I am so grateful for them.