September 2019
Before deciding to get my other knee replaced, I let my husband go through the process first. We now had a new, younger surgeon, as my long-time surgeon had retired. The young surgeon explained new techniques in total knee replacements that minimized the invasiveness of the surgery and vastly reduced the recovery time. My husband’s surgery went smoothly. He was off all pain medications within a week – and only waited that long because of peer pressure. His physical therapy went painlessly for the most part, and he recovered from the surgery in a little over six weeks. For almost 15 years, I have been terrified that the Chronic Regional Pain Syndrome (CRPS) would come out of remission. So I met with my primary care doctor, the surgeon, and my neurologist and spent hours with each of them discussing the possibility of CRPS coming back with a total knee replacement. CRPS is still frequently called by the old name of RSD. Both the surgeon and the neurologist thought the chance of getting such a rare disorder twice was unimaginable. I must have argued more with my primary care physician because she finally got frustrated with me and said that if I did get it again, I already had a team assembled, and everyone would recognize the problem quickly.
December 2019
I went through the total knee replacement surgery and woke up in the recovery room in pain. Not the CRPS pain I remembered, but all my leg muscles in both legs were in spasms. The nurses asked what I usually did with a charley horse like that, and I said: “stand up.” The nurses laughed and said that is not going to happen. I was given muscle relaxers in the hospital, but nothing worked to reduce the spasms. As soon as they let me walk, I walked as far as I could to minimize the pain and loosen the muscle contractions. Physical therapy at the hospital and later at home went even better than my husband’s success. But I still had the spasms and no medication had any effect at all. Eventually, the muscle contractions started to interfere with the range of motion of the knee. I also started to have sharp pains in the muscles and burning pain. I made an appointment with my neurologist. After listening to my description of the surgery and the following aches and pains, she looked at my legs and said: “I’m sorry, but you have RSD.” I was stunned and didn’t believe her. I argued with her. “Where is the maroon skin?” “I am not in that kind of pain.” She very calmly told me that it did not appear to be as severe a case as I had before, but she was sure.
CRPS is still a rare disorder (on the National Organization for Rare Disorder’s list), and there is no such thing as a “standard treatment.” In the past few years, there have been attempts at clinical trials, but several have been terminated because they couldn’t find enough people with the disorder to conduct the study. According to NORD, approximately 200,000 people in the United States have CRPS in any given year.
