My name is Taylor Bennett and I was first diagnosed with Complex Regional Pain Syndrome (CRPS) in March 2016 although my symptoms first emerged two months earlier. I was 15 years old at the time and was a dancer and an 8th grader at Cannon School in Concord, North Carolina. My initial “injury” was an extremely mild neck strain which progressed first into a total locking of all of my neck muscles and then to the brachial plexus of my left arm. My left arm became cold, numb, tingly, and unusable. I was put on medications to deal with the symptoms, went through multiple MRIs and blood tests and saw physical therapists as my doctors tried to figure out what was wrong. Over the course of the next several weeks, the symptoms in my left arm began to improve but then “jumped” first to my left leg, then my right leg, then my right arm and then both legs and my right arm simultaneously. During this time, my pediatric neurologist diagnosed me with CRPS as did the doctors at Duke Children’s Hospital. I was not able to attend school during the last half of that year (8th grade) because of the severity of the symptoms and large number of doctor’s appointments. During a given week, I had physical or occupational therapy every day, acupuncture 3 times a week, checkups with my neurologist, etc. I was in and out of a wheelchair and walker and had to learn how to adapt to my body’s ever changing limitations. Because my symptoms were constantly changing, it was difficult for my friends and teachers to understand what was wrong with me. I was not able to do things with my friends or dance which were the things I loved the most at that time. My symptoms slowly improved and by June 2016 my symptoms had totally disappeared. That summer was spent getting back to normal as I weaned off of medications, worked to strengthen my muscles which had gotten weak, and caught up on the school work that I missed. We thought my CRPS was completely gone but it resurfaced in January 2017 with the stress of being in high school. My symptoms were exactly like they had been the year before but less intense and my body seemed to recover more quickly. I was able to stay in school with significant absences and kept up with my classes with some minor adjustments. Luckily, my school was extremely accommodating! During this time, I focused on my academics, tried new school sports, and began formulating a plan to use what happened to me to help others.
After talking with two of the leading CRPS experts in the country, we have learned that I am following the same path as most. I will continue to have relapses for a while until it totally goes away for good (we hope). Research is showing that most with CRPS stop having relapses before adulthood but a few will struggle with the syndrome for their lifetime. Luckily, I am a very strong and determined person who maintains a positive outlook on life. I am sure that those things are contributing significantly to my recovery.