Stefanie's Story

Stefanie at a horse show, she won 2nd place in the obstacle course! Yeah Stef!

My name is Stefanie and I am 12 years old. I live in Albany, New York, USA. I developed RSD in my left foot on January 12th. I think it was a sprain or something because I did not break anything that started it all. At first, my foot hurt really bad and so I iced and elevated it, thinking that it would go away in a day or two which I have done before and have gotten better. But the pain just got worse.
At the time, I was playing soccer, basketball , and was on my fourth year dancing jazz and hip-hop.

As the pain got worse, my mom took me to the doctor to get an x-ray. It showed inflammation but nothing else. By this time, my foot had started to peel and it was turning blue and cold. I had two MRI's and once again, it showed nothing. The pain was so bad that I couldn't even walk on my foot!

Putting on my shoe was so hard because my foot was so sensitive to touch. The doctor said that my foot was hurt from overuse and told me to stay off it. When that didn't work, a cast was put on it. That was when my mom took me for a second opinion.

This doctor took off the cast and right away knew what I had. It was called Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome. He started to tell me that he could help me and that this pain I was having is extremely painful and he knows how hard it is to put my foot down. However, the nerve messages from my brain are sending faulty messages to my foot, saying that there is something wrong with the foot when in reality there is not!

I was really confused because the pain sure was real to me and I knew that there must be something wrong with my foot because I couldn't walk on it. But after my mom made me understand how powerful the brain and the nerves are, I finally realized that it must be true. The doctor said that any way I can start using my foot, the better and faster I would get better.

I heard him but I still could not put my foot on the floor, he couldn't even touch my foot because it hurt so much. So he ordered physical therapy and prescribed Neurontin 100 mgs and Advil. My foot was swollen, blue, cold, sensitive to touch and I was on crutches, not walking on it at all.

My mom went and borrowed a foot massager from a neighbor and started putting my foot in it. At first, the water hurt my foot so badly.
"But you know everything hurts your foot. Just try to keep it in the water," she said.
I put my headphones on and blasted my music and then I managed to keep my foot in the massager for five minutes. Later on, I was able to keep it in for 10 and then 20 minutes, until I could go in for hours. The massager made my foot feel better and it did not hurt it. The color in my foot would turn to pink instead of blue and the temperature of my foot would become warm again. So I continued this everyday, sometimes three times a day. Whenever my mom saw my foot blue or cold, she would get the massager. Finally, I could tolerate bubbles & jets and the massager was helping the sensitivity in my foot. After the massager, I would rub and dry my foot with a towel; it would hurt, but I still did it to try and desensitize it.
My mom would say, "We are going to run that nerve so ragged that it is going to give up one of these days."
My mom had it in for that nerve.

I started going to physical therapy, putting my foot in a jacuzzi and then doing exercises to strengthen my foot and leg because I had lost a lot of muscle. Still, I just could not do physical therapy with how much pain I was in. My mom asked the doctor to give me another medicine called Aleve 220 mgs which finally helped cut the pain in half and I could do more PT.

By May, I started seeing some results. I was riding an exercise bike, doing more strengthening exercises and starting to get my balance back little by little. It was so hard to do all the things that they wanted me to do, but I did all of it. Sometimes I just wanted to cry, but I knew that I had to do it to get better. My mom was always there, cheering me on or holding my hand. Soon, I was on one crutch and then no crutches!

My left leg now has as much muscle as my right leg and my foot no longer turns colors or gets cold. I can walk on my foot, but have trouble running. I am still continuing to do PT three times a week until I am running. Today, I do not play soccer, basketball, or dance, but I now ride horseback and am pretty good at it. I ride my bike, play tag, and I'm not in as much pain as I used to be. I still can't wait until the day I can return to sports because I love playing them.

Today is August 10th, 2003. For all of you who are reading this and know of someone or have RSD yourself, I'm giving you the advice. Try really hard to work through the pain and never feel like the pain is in your head or that you're crazy. The pain is real. If you know of someone who has RSD, just remain the same friend as you were before RSD. You may have to do different things like go to the movies or watch TV instead of running and playing sports, but be there for them.

Stefanie

( Stef has now had 2 LSBs, using lidocaine, and after 10 months of pain, she is now painfree, other than some minor problems every once in a while. She spent her 13th birthday without any pain! )

"Courage is doing what you're afraid to do. There can be no courage unless you're scared."
Eddie Rickenbacker