You get so many tragic stories about RSD/CRPS and I thought you would appreciate some good news for a change. I was diagnosed with CRPS in my right foot in 2002 after a hairline fracture of a bone under my big toe. I had recently run my first marathon and was training extra hard every day for months. For the next eight years I battled CRPS in all four quadrants, resorting to two Spinal Cord Stimulator surgeries three years apart – losing both to systemic staph infections.
Countless times I was hospitalized for IV pain management during flares when the pills didn’t touch the pain. Infections caused multiple cases of pancreatitis and two cases of adrenal failure. I was a mess. Like Cynthia, I spent years resorting to bed rest for days or even weeks at a time because I just couldn’t stand to do anything else. The isolation and shame was more than I could take at times.
Early this year I decided I had had enough and I was willing to do anything necessary to get my life back. My doctor convinced me to enroll in a clinical study with a Psychiatrist at SUNY Syracuse who was testing a theory about CRPS and hyperalgesia. His premise was that long term opiate users with CRPS and other chronic pain conditions were experiencing a hyper pain response as a result of the body’s inability to respond to its own pain. I thought he was a little crazy, but I thought, “What the heck?” and enrolled in his study anyway. The plan was to wean off of the opiates (which I had taken every day for many years) quickly and sort of force my body to look at pain from the perspective of being able to manage it itself.
On a Monday morning while I was in withdrawal, he gave me one dose of a long-acting opiate and waited to see what happened. I won’t lie and say it wasn’t horrible during the detox phase. For the first week I threw up more times than I can count, relying on a combination of anti-nausea, anti-diarrhea and anti-stomach cramp medicines to help me keep anything more than water down.
The second week I finally had the strength to walk up and down the stairs and go on short walks outside. During this time I was so sick with withdrawal that I almost didn’t notice that my pain was suddenly cut in half. And then the next week cut in half again. And by the end of the first month no CRPS pain. And no swelling and no color changes. It was remarkable to me! For the first four months I could hardly talk about my recovery because I was sure it was a fluke and the disease would come back with a vengeance.
This month marks my ninth month of complete remission from CRPS symptoms and, coincidentally, my ninth month without pain medicine stronger than ibuprofen. When I talked with my doctor at SUNY Syracuse the other day he told me I was the first documented case of CRPS remission with detox and the first to concretely support his theory that long-term opiate use causes hyperalgesia. Although this treatment is not an option for most patients with CRPS, especially the patients who have suffered as long as I did, there is a glimmer of hope at the end of the tunnel. I have my life back, and just as importantly, my family has me back. When my doctor has the results of his study, I will forward them to For Grace.