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Walking the fire. My journey to pain management living with CRPS

Published on July 11, 2018 under RSDS General Info

By Roy N Greenwood

I was diagnosed with CRPS in my right leg in late 1996, before the internet had really become a thing and most research was still done at the local public library. A simple slip and fall while working on a cold and rainy night back in December of 1995 changed my life forever. I found out quickly that going through the Worker’s comp system by itself was going to be a total an abomination, but doing it while suffering through the first stages of CRPS when early intervention is critical, would be even more distressing. At first, the insurance refused to accept the diagnosis or even pay for any of the treatments or durable medical equipment. We managed with the help of legal counsel to eventually secure the aid we needed to begin navigating the tricky waters of treatment. I was soon assigned a nurse case manager by the insurance and the treatment began in earnest. I went through seemingly countless rounds of Sympathetic Nerve blocks, brutal contrast baths, and trial medications both orally and intravenously coupled with therapy sessions just to learn how to walk all over again. I dreamed of recovery and hopefully returning to work and a somewhat normal life. But I began to see right away that it wouldn’t be quite as easy as I had thought

After nearly 3 long, torturous years of continuous treatment, I was finally declared permanent and stationary and sent for job retraining since the court ruled that I could only do sedentary work. Eventually, I earned a vocational certificate in Computer repair and set out to try to return to normal life as best as I could. After job stints with Micro Menders, EarthLink, Inc. and California Networking, it was clear that my body simply couldn’t take the daily grind anymore and it would eventually just give in to the escalating pain level. Treatment resumed, but now I would have to shoulder the burden of the cost through my own insurance since the Worker’s Comp case had been completely settled out years earlier. Just as before, I began rounds of nerve blocks, therapy sessions and pain medications that left me dazed and confused from the side effects.

By 2002, seven years after the injury, it had become clear that I simply couldn’t work anymore and it was only a matter of time. Medical retirement at the tender young age of 36 years old became my bitter pill of reality. Now married with a young family of three children, the daunting specter of being disabled from here on out with no steady income other than short term and long term disability was frightening to say the least.

Once the dust had settled and I began to receive disability, I found myself sitting around with nothing but time on my hands, and of course all I could think about was my pain or my treatments. By this time I had become a candidate for the spinal column stimulator implant and was scheduled to have the first of 8 surgeries to eventually make it a feasible treatment. I would also eventually relent to having the drug infusion pump implanted as well, although it would ultimately end in failure. But no matter what treatment I yielded to, I found that an unoccupied mind was by far the worst enemy of someone suffering from CRPS. It was then, that I realized that although the disorder had robbed me of my mobility and stability, I had to find something to occupy my mind rather than sitting around dwelling on the pain or treatments for that matter.

What I eventually discovered was that minimizing pain with CRPS wasn’t about the right combination of drugs, the right wavelength on the TENS unit or the frequency on the spinal column stimulator, it was about mind over matter, or in this case, the pain. I quickly found that keeping my mind occupied went a long way towards surviving on those harsh days when the waves of burning pain are relentless and never-ending. Finding something to do to keep it from worrying about what was going on with my body became my primary focus. I had come to accept that CRPS was a foe that could be rarely defeated, and if I was going to go the distance, or the full fifteen rounds with it, I would have to take my mind off of those grueling middle rounds.

I dabbled in plastic modeling but quickly became bored since it was something that most people could do with little effort. I was quickly discouraged until I sat around one day looking at empty soda cans and imagining all the things they could become besides a pile for the recycling bin. Something told me to test my theory and so I set began crafting and attempting to model with cans in earnest. After some early experimentation, I found that with the right templates, building pretty much anything was possible and soon my mind was occupied with all of the possibilities. That was over 15 years ago and since then, I’ve won a few IPMS awards competing against some of the best modelers in the country and I’ve even had a few of my creations featured in FineScale Modeler and Star Wars insider Magazines. I’ve built models as big as 8 foot in length requiring well over 1500 cans and 4 months to complete including a Life Size 1:1 scale R2D2 built with the help of my family that you can see here: https://www.youtube.com/watch?v=UmBAAi61Wrk

What I discovered during my own personal journey was that minimizing the pain was just as much about finding something constructive to do as it is following your treatment plan and listening to your doctors. I’ve had RSD in the right leg for over twenty-two years now and although it has robbed me of my pride, stability and mobility, it has not taken away my ability to craft with my hands nor my passion for creating new things. Each day, I build something, even if I don’t feel like it, because more than anything it allows me to cope with CRPS.

To fellow CRPS sufferers, I would say, we cannot change the circumstances of who we are and how we all came to be afflicted with this terrible disorder, but we can choose how we intend to react to it. The pain will always be with us, but choosing to find a way around it and accomplishing something positive along the way is how we beat it. That’s how winning is done…