RSD-A PERSONAL EXPERIENCE
By Melanie Barousse
As January rolled around and Jake started back to school, he seemed to be losing ground. He would have to be picked up earlier and earlier each day due to pain and fatigue. He complained that his ankle “burned”. He could not wear a sock on it and only wore slippers that were cut in a way that nothing touched the ankle. When I called the doctor at Shriners, which was three hours away, the doctor explained that the surgery was extensive and very invasive. He felt that Jake was having difficulty due to the pooling of blood in the ankle from the surgery. We were told to use heat and pain medication. I felt that it had to be more than just an ordinary explanation, however, because Jake is not one to complain or whine. He can take a great amount of pain, so this was beyond what I had seen in the past. If I walked by his ankle, he cried out in pain. The little bit of air that was stirred from my passing was painful to him.
After several more days of pain with no relief in sight and the pain getting worse rather than lessening, I e-mailed the support group with the problem and the symptoms. That very night I got a phone call from Susan Wynn in New York. She said Nicole had the same symptoms and they finally diagnosed her with RSD. Susan and Nicole were our blessings! I looked up RSD on the Internet and was ready with information. I called Shriners the very next day and spoke with the physical therapist. She concurred that it could very well be Reflex Sympathetic Dystrophy Disorder. After the diagnosis was confirmed, the doctor put Jake on 900mg of neurontin per day. I then talked to our local physical therapist, who gave us a regimen to try with desensitization techniques. We started with four and five massages per day using lotion and barely touching the skin, increasing in the amount of pressure applied. Jake started putting his ankle in water three and four times a day and a soft cloth was placed over the ankle for short periods of time. Of course, by now Jake was back on home bound as the pain had worsened to the point that he could no longer walk.
After a couple of weeks of desensitization therapy and neurontin, Jake returned to school and the pain became a little more bearable as the days passed. About that time, we met a doctor in our community who was recovering from a traumatic fall that broke his pelvis and hip. He mentioned that he had Reflex Sympathetic Dystrophy Disorder as a result and mentioned the spray Guanethedine. I looked it up and found that it had helped others with RSD return to normal daily activities, while still others could not take the burning sensation it gave them. Once I called Jake’s doctor, he prescribed the spray. Jake used it and was finally able to wear a shoe. Gradually he began participating more at school in activities that required more leg movements. By March, Jake was able to begin practicing with the soccer team and by April was in the game. Jake continues at this time to take 300 mg of Neurontin daily. He still has some of the pain from the RSD, but he does not complain as he says he has had much worse pain and knows how bad it could be.
