It was only a few years ago I ran into an old acquaintance named Silas. After catching up, he asked if I could help with a fundraiser for his wife, Amy, who suffers from Dystonia. It wasn’t too long after the encounter that I helped to organize the very first Shakey Amy event. During that time I learned more about Dystonia than you can ever imagine, so when my boss lady’s dad started telling me about a similarly little-known and understood disorder called CRPS or RSD, I was intrigued once again and wondered if there were any folks in Texas doing something like Amy and Silas, rather than just dealing with CRPS.
Enter Tricia Scott. Tricia was kind enough to tolerate my naivety and answer a ton of questions about the disease and her own organization, Triumph Over Pain.
Complex Regional Pain Syndrome (CRPS), previously known as Reflex Sympathetic Dystrophy (RSD), is a disease of the Autonomic Nervous System characterized by sharp, stabbing, burning pain, with edema, allydonia, and temperature differentials. In approximately 78% of all cases, CRPS spreads from beyond the initial site to a secondary site. In approximately 8% of all cases, it spreads to the entire body, becoming systemic. Usually caused by trauma, it is unclear why it affects only some individuals. While currently there is no cure for CRPS, progress in its treatment is occurring continuously and there is hope that a cure will one day be found.
How and why did you get involved with Triumph over Pain?
After attending the USC Quench the Fire 5K in Long Beach, CA in December of 2007, I knew I wanted to do something like that in the DFW Area. There are well-known RSD/CRPS communities on both the East and West Coasts, but nothing significant in this part of the country. I created Triumph Over Pain to bring about awareness for RSD/CRPS. Special care went into every aspect beginning with our logo. I wanted an organization that embodied the spirit of living with RSD rather than suffering from RSD. In a bit less than one year, we have surpassed the 1,000 member mark.
I have a friend who was diagnosed with Dystonia and suffered long until she found a doctor to properly diagnose her, let alone take her seriously. Do you find that many people suffering from CRPS and RSD have found themselves in similar situations? I understand that many spouses and doctors have the knee jerk reaction of the pain being psychosomatic. What is your advice for those who suspect that they or a loved one may have CRPS or RSD?
Sadly, you are absolutely correct. This common experience is the reason there is such a need for education and awareness for RSD/CRPS. Most with RSD go through a lengthy process until they receive a proper diagnosis. Many primary care physicians, usually the first to hear the patient’s complaints of pain, don’t know the symptoms or signs of RSD. Because they aren’t familiar with RSD, once the battery of testing reveals no affirmative result, the patient is told the pain is in his head. The amount of pain the patient expresses is completely disproportionate to the original injury. At this time, many doctors believe the patient is simply seeking drugs.
Spouses and loved ones will often believe the pain is psychosomatic and/or being manufactured to receive attention. Worse still, the patients themselves often begin to question whether their pain is real or imagined. All of us are familiar with acute pain (e.g., ankle sprain, broken limb). With acute pain, there is significant pain and then the injury heals. Thus, eventually (within a few days to a few months) the pain subsides and life returns to normal. With RSD, the pain is constant. Sometimes the pain is excruciating while other times the pain is dull and achy. Even though the initial injury heals, the pain remains.
My advice to those who suspect they or a loved one has RSD/CRPS is to seek diagnosis as soon as possible. I would suggest going to RSDS.org and comparing their symptoms to the known symptoms of RSD/CRPS. Early diagnosis and treatment is extremely important. The longer treatment is withheld, the harder it is to reach a point where the RSD is manageable.
My inspiration in creating the TOP 5K/10K Run Walk & Roll was the 1st Annual USC Quench the Fire 5K in Long Beach, California in December 2007.
The TOP 5K/10K event planned for May 8, 2010 will be held in McKinney at the beautiful Craig Ranch. This will be an event for everyone! We will have a 5K/10K (USATF certified courses) and a 1 Mile Fun Run Walk & Roll for those that wish to participate. This is an opportunity for those with RSD/CRPS to come out and meet others who have shared similar struggles in the past and who may be able to share their future triumphs.
I remember how inspired I was when I watched those with RSD cross that finish line, doing something they thought impossible. Adidas says it best, “Impossible is Nothing”.
A portion of the money raised will benefit RSDSA. Triumph Over Pain is currently awaiting our 501(c) 3. Once received, we will reach out to UT Southwestern and/or Baylor Medical to explore future pain research opportunities. Because the money is raised in North Texas, I would like to see a university in the North Texas area benefit by giving them a research grant for pain research.
Online registration for the TOP 5K/10K Run Walk & Roll will open in January 2010.
Registration will be available on triumphoverpain.org. We are looking for volunteers in addition to participants. If any of your readers would like to be involved in the planning or in volunteer opportunities the day of the event, we would love the help! They can contact me at firstname.lastname@example.org.