Fighting RSD together
(a mother and son share the pain)

My name is Cheryl, and my RSD started January 30, 2008. It took months for an actual diagnosis - months of doctor's visits, tests, and anxiety. Once my neurologist diagnosed me, he offered me a variety of medications. I politely refused and chose to fight my battle with acupuncture and physical therapy. Both helped, but I found myself feeling very alone. So little is known about RSD that even my physical therapist (who had the most experience in the clinic) admitted he knew very little. He gave me a few simple exercises, suggested I look a few things up on the Internet, and said that was all he could do. I made progress, actually started walking fairly normal again, but could not seem to conquer the pain and be able to do simple things like take a walk with my family. I refused to give up but sometimes felt frustrated that I wasn't making progress faster.

In early December, I was stunned to learn that my son had RSD as well. He injured his toe which triggered the RSD. I kicked myself for not recognizing the signs, but once his doctor diagnosed him I could look back and see that it made sense. One of my first questions for my neurologist when I was diagnosed was, "Is this genetic?" He assurred me it was not. Now, however, I have to wonder. Watching my son fight his pain was far worse than experiencing it myself. I would have gone through it all over again if I could have spared him the pain.

Fortunately, we live twenty minutes from a fabulous children's hospital that has a rehabilitation program for RSD (although they call it RND). My son was admitted in January and spent three weeks living at the hospital. His rehab was intense to say the least. I was told before he started that the reason there is no program for adults is because adults could never handle what the kids go through. I am incredibly thankful that my son is now fine. Within a month of coming home from the hospital his pain was gone. He still does ninety minutes of therapy a day and even made it through another toe injury with no relpase.

I believe that things happen for a reason. I feel my RSD enabled me to empathize with my son in a way no one else could which hopefully helped him during his toughest days. I also believe that his RSD happened to help me finally heal the way I needed to. Watching him do his rehab taught me what I should have been doing all along. I wish someone would have told me that I needed to push through the pain and use my foot in spite of the pain. Exercising and doing simple desensitization exercises made a huge difference! I would never have know any of this if it weren't for my son's experience. Now I just want to share it with everyone in hopes that I can make someone else's battle with RSD easier. Taking that step, running those stairs, scratching that foot seems too painful to imagine, but the end result is so worth it. Now I can walk with my family and do everything I used to do. There is hope!