In 1999 I finished my last rotation and classes for medical school at the University of Louisville. During my last few months, I had experienced intermittent brief, sharp pains on the inside of my right upper arm. I held off on my boards (part II) and Match so that I could take a little time to see what direction that I wanted to take in medicine (I was leaning toward Pediatric Oncology). During this time, my intermittent pain became more frequent and more intense, so my focus quickly turned to trying to find out what was causing the pain. Violent spasms of my right shoulder had joined the pain in the following months. This prevented me from continuing to progress in medicine, and I was left with $130,000 in school debt for a career that I could no longer pursue – and soon after did not even WANT to pursue, based largely on what happened as described below
By the early winter of 2001, I was on 10 Percocet tablets per-day for pain relief along with several Ativan tablets for the spasms, and was being passed around from doctor to doctor, as no one could make sense of my pain or the spasms. The Chief Neurologist at a very reputable University Hospital in NC, where my husband and I now lived due to his job, gave me a Botox injection in my shoulder to treat what he thought may have been Spamotic Torticollis, a movement disorder that generally does not involve intense pain. The injection took several minutes with a very large needle and was so painful that my husband had to brace me as I writhed in pain and cried to the point of nearly passing out. Upon completion of a “full neurological exam” of my right arm and the subsequent lack of relief from the Botox injection, my husband and I were sat down and told that I was being referred to a Psychiatrist, as this high ranking neurologist thought that my pain was psychogenic in nature. As he left the room I slid out of my chair onto the floor and sobbed.
I knew that I wasn’t crazy and that the pain was real. I felt so abandoned by the profession that I had spent the last decade of my life preparing to pursue with my arms wide open. I could recall the snickering of physicians and residents when young women would come into one of the hospitals with poorly understood or unexplainable symptoms during my years in medical school. They were often called a “train wreck” or “frequent flyers” and other derogatory terms to downplay the believability of their symptoms and the propensity for them to return on multiple occasions. If I asked questions or said anything, I was laughed at or derided myself, so I kept my mouth shut, kept my head down, and continued to just see my patients. On many occasions in medical school, I was ridiculed or reprimanded for “marching to the beat of my own drum.” I even failed and had to retake a rotation that I had excelled at academically because I was not willing to conform like the residents wanted me to. I was told I “needed to learn to conform.”
My husband and I requested an MRI of my right arm before we would agree to see a Pyschiatrist. A 2.5” by .5” neurofibroma (tumor) was found strangling a sensory nerve in my arm and removed a few weeks later. Suffice it to say that the Psychiatrist visit was never scheduled. This was only the beginning of my battle.
For over seven years my husband and I have fought through misdiagnoses, ignorance, and arrogance while trying to find an answer to my pain. My husband started spending 20+ hours per-week on the Internet learning about chronic pain and was the first to suggest RSD. We spent nearly three years trying to find a physician who would be willing to consider this diagnosis. I had near fatal complications from drug interactions on multiple occasions and remarkably, STILL no one listened. I was pacified by some doctors and just completely dropped by others.
I finally found a young physician while living in Nashville, Tennessee who listened to me and my story, believed my pain, and found that a diagnosis of RSD was probable. He helped me stabilize with medications and tried a peripheral nerve block, but he had not treated this disease before. Within a year I moved to Orlando, Florida with work and found a physician in Palm Bay who was educated on and specialized in RSD. He helped me begin to turn my future around.
I have since been officially diagnosed with RSD by multiple physicians, including Mayo Clinic. I am currently in Mexico for an experimental research trial where I have recently completed a five day ketamine-induced coma in an attempt to provide some relief from this horrible disease. Prior to the coma I had full-body, systemic RSD with burning and stabbing pain over my entire body, with the exception of the palms of my hands and soles of my feet. The allodynia was so severe that even putting on the softest of socks took several minutes and forced tears. My right arm had over 10 neuropathic ulcers and was covered in Lidoderm patches and immobilized in a sling. I could no longer walk without a wheelchair or cane. And I have really just touched on a few of the obstacles along this long journey.
At the moment, my future is looking brighter by the day. We need to educate the medical community on the growing problems of chronic pain, and specifically, on the bias against women with unexplainable symptoms, as this bias appears so pervasive in the field. There is hope. There are excellent physicians working to shed much needed light on our plight. Don’t ever give up. It’s not only our own pain and suffering that we are fighting to end, but we also fight so that future pain sufferers have a chance at a normal and fruitful life. I know that many of you who have written before me have paved the way so that me and my family have the hope and options that we do. Thank you so much for fighting for me. I will do my best to return the favor. Feel free to learn more about my pain story and the research trial that I am in the midst of completing at mypainstory.com.