DDear Dr. Kirkpatrick and Dr. Cantu,
I first of all would like to thank you both for all you have done and continue to do for those of us suffering from RSD.
My RSD began when I was 45. I have had the disease for two years now. My disease started in my left hand and within seven months, it had spread throughout my entire body. The RSD is now in my neck, both legs and arms, hands and feet, face, vocal cords, lower back, shoulders, and hips. Even my fingers throb with severe pain making it virtually impossible, at times, to turn pages in a book. My left hand and fingers have atrophied and stay in a “claw-like” position. I am frequently in a wheelchair, especially when I have to walk long distances. I stay in bed practically all day long. It’s too painful to even sit in a chair. At times, I have to have someone cut my food for me due to the pain and disability with my left hand.
My Allodynia, severe sensitivity to the slightest touch, is so severe that it is painful to even get dressed. It is unbearable to be licked by my dog or even have a sheet be pulled off of me. Being hugged hurts to the point it is nauseating. Going up a flight of stairs is torture and at times impossible. I’ll be alert one second, and the next second, I can’t even keep my eyes open because I’m so weak and tired.
My RSD not only affected me, but my husband as well. He would curse at me daily about my disease and tell me he wasn’t going to put up with it much longer. He was anything but loving and understanding. It angered him because I was now an inconvenience. I no longer could cook, clean, run errands, and be the active mother and wife I used to be. He filed for a divorce seven months ago. We had been married for 28 years.
Prior to my RSD, I was very active. You couldn’t slow me down. I enjoyed cooking, gardening, and cleaning. Being a mom and a wife brought so much joy to my life. I had just built my dream house two months prior to my accident. I was the actual contractor so I was constantly on my feet working on the house and loving every minute of it. I have been on numerous medications, such as Cymbalta , oxycodone, methadone, Ambien CR, Lyrica, fentanyl patches, and Neroutin. None of these relieved the pain like I needed them to.
I have had two surgeries. The first surgery was carpal iunnel release. He also removed scar tissue from my nerves. The second surgery, I flew to St. Lois to have right leg nerve decompression. I have had three stellate ganglion blocks, and a series of lumbar epidural injections. In addition, I underwent a trial of spinal cord stimulations for both my upper and lower extremities. I have also had two separate ketamine infusions lasting five days each at 30-40 mg/hr. None of these procedures or surgeries gave me any relief from my pain.
My RSD has taken my life away from me. The ketamine coma study has given me the hope of one day being set free from this dreadful disease that I have to live with every second of the day. I am fully aware of the risk involved, but it’s worth it all just to get my life back and start living again-- free from this debilitating pain.
My strong faith in God and His love for me as well as the love and support I get from my family and friends gets me through each day.
I am looking forward to coming to Mexico for the ketamine coma procedure. Thank you again for all you have done to help those of us fighting this battle against RSD.
God Bless You All,
Atlanta, Georgia USA
August 6, 2008
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