Up until my sophomore year of high school, I had always been the picture of health. My sophomore season of basketball, I was a full time JV basketball starter, leading scorer, and co-captain, while playing significant time for the varsity. In December 2011, I developed patellar tendinitis and IT Band Syndrome in my left knee. Several of the girls on my team also ended up with tendinitis from running 30 full court suicides in addition to practice! Coach mandated them... I was believed to be one of the "lucky" ones because I only had the tendinitis in my one knee, instead of both. Anyway, I pushed through the pain until the end of February, because I thought it would just go away. But it didn't. I went to an orthopedic surgeon who did X-rays and said it was patellar tendinitis, illiotibial band syndrome, and a damaged nerve. He thought it was unusual that I only had the pain in the one knee. He was slightly unsure of his initial diagnosis. If I rested and did PT regularly, it would be fine in 4-6 weeks. If it wasn't better by then, he would have to consider surgery. 8 weeks came and went. 14 weeks came and went. Finally, I got fed up and decided that I was going back to sports. It was not improving. 20 weeks passed before it even started to feel remotely better. My knee was swollen, ice cold, and was changing from red to purple to blue. I wasn't going back to that doctor. I was not having knee surgery at 15! But the pain was still there...
My Battle with a monster known as CRPS
During the summer between my sophomore and junior years of high school, I injured my finger while on a mission trip. I was in Michigan at the time and a long way from Pittsburgh. My dad is an ER doctor and he said it was fine. Fast forward a week. I didn't sleep the whole time cause my hand was hurting so bad. My dad kept saying that it was fine. Finally, we went to the ER and got an x-ray which showed that I had subluxed my fingertip of my pinkie. A week later, I had surgery because they thought I ruptured a tendon. I didn't. I started hand therapy the next day and it KILLED! I could barely keep from passing out during the session. Finally after a month of hand therapy, they let me play basketball again and I injured my fingers over and over again. I can't tell you how many joints I subluxed and straightened when I was on the court. Then in October 2012, I was in school and I felt this excruciating pain in my pinkie and upper hand. My mom and I went back to the surgeon the next day and he did x-rays. They came back negative. He told me that it sounded like CRPS but he didn't think so because I was too young. (16 at the time) He wanted me to get a QSART (sweat test) before he would confirm the diagnosis, even though I had the burning pain, swelling, color and temperature changes and early stages of contractures. It took two weeks to get the QSART results, which ended up being extremely abnormal, and 2 weeks to follow up with the doctor. I will never forget the day I was told that I had Complex Regional Pain Syndrome Type 1 or CRPS for short on November 14th, 2012. The surgeon that diagnosed me told me that my CRPS would go away "very fast", because I didn't have an risk factors for it. Mine is an aggressive form of CRPS, not typically seen in kids. I have forced my doctors to think outside the box to treat me. Because my symptoms can be so severe, it is not unusual for me to land in the hospital for a week at a time for treatments. If it is a symptom of CRPS, I probably have it. The burning pain, skin color and texture changes, temperature changes, changes in hair and nail growth, muscle spasms. The list goes on.
As I mentioned earlier, the CRPS started in my right pinkie finger and part of my hand. The pain very quickly spread all the way up to my shoulder and within about 2 weeks, mirrored over to my whole left arm. At this time, we realized just how aggressive my CRPS was and my doctor suggested a 5 day inpatient ketamine infusion. Amazingly, at the end of the treatment, I was pain free! However, my pain relief was short-lived, as I rolled my ankle a week later. The pain returned with a vengeance. Since then, I have had CRPS all over my body. It isn't always full body, as the ketamine infusions reduce and even eliminate pain from certain regions.
The CRPS spread and changes from day to day. Even the slightest injury can make the CRPS spread to a once currently unaffected region like wildfire.
As a result of the CRPS, I have developed dystonia, myoclonus, dysautonomia, orthostatic hypotension, vasovagal syncope, more pain from my joint hypermobility syndrome, vocal cord dysfunction, and problems with my stomach. Even on my best days, something is bothering me. I don't readily show it, because I hate crying in public. Unfortunately, I can't always help it and it is quite obvious that something is not right. I hide everything with a smile, so no one can really tell how I am feeling that particular day. It is a coping mechanism more than anything.
Since January 2013, I have had over 30 week long admissions for these ketamine infusions. I really don't like the ketamine infusions as they are hard on my body and I don't like the idea of not being able to live life for a week. Treatments for CRPS don't come without risks either. However, without these infusions, I would not have a great quality of life and I would not be the active skier and martial artist I am today. I am proud to say that despite CRPS and my other conditions, I recently qualified for my sixth consecutive Nature Valley NASTAR National Championship for ski racing, I've earned my 1st Degree Black Belt in Songahm Taekwondo, and I am a sophomore at the college of my dreams and thriving. I owe it all to my pain management team and all of the other doctors, nurses, and physical therapists that have worked with me. Of course, I couldn't do it without the support of my loving family and friends.
Timeline of Symptoms August 24, 2012-Gardasil Vaccine (developed flu-like symptoms) September 2012- upper back muscle spasms, joint pain and stiffness October 18th, 2012- RSD/CRPS Disorder Onset October 19th, 2012- Clawing of right hand begins February 2013- Dystonia Starts in Right Foot, Ankle, and Toes August 2013- Dystonia Starts in Left Foot, Ankle, and Toes September 2013- Grade 2 Decubitus Pressure Ulcer October 2013- Muscle weakness and stiffness June 2014- Start of nausea, vomiting, constipation, diarrhea, and unexplained weight loss, bowel obstructions July 2014- Full Body Spasticity Begins Late July 2014- Syncope episodes, Tachycardia, and dizziness November 2014- Prolonged QT time February 2015- Tree Nut Allergy Begins March 2016- Seizures begin April 2016- Failure to Thrive May 2016- Mayo Seizure November 2016- Intestinal spasms December 2016- diaphragm/chest wall spasms