My RSD Story

My name is Emily.  I’m a high school student in Austin, TX and I’m a competitive swimmer on my high school swim team and I am involved with other clubs and organizations.

On August 17, 2005 I was diagnosed with Reflex Sympathetic Dystrophy in my right knee and lower leg.  Reflex Sympathetic Dystrophy (RSD) also known as Complex Regional Pain Syndrome (CRPS) is a serious malfunction of the nervous system.  The main effect of the disorder is that the nerve endings in the area that is affected are constantly experiencing extremely severe pain even though there is nothing physically causing the pain.

Some symptoms that occurred throughout my RSD experience included: temperature change in the knee, swelling, abnormal skin color changes, limited range of movement (or no movement at all), sweating, severe sensitivity to touch, and mostly a severe and burning pain.  I experienced all of these symptoms all at the same time.  Today, there is no known cause or reason RSD occurs.  And there is no known cure, no magic medicine that one can take to relieve the pain.

I’m one of the lucky ones because my RSD was diagnosed right away.  I was undergoing Physical Therapy with Kevin McHorse of the Central Texas Pediatric Orthopedics group to recover from a knee injury from swimming.  When we described the condition to Kevin he immediately got us in to see Dr. Jay Shapiro who diagnosed the RSD.

Thanks to Dr. Shapiro and Kevin I was able to begin treatments immediately.  Unfortunately not all doctors are knowledgeable about RSD/CRPS.  Lucky for me, I was diagnosed in the early stage where there was still hope for a complete recovery.    I really was lucky, but I had no idea about what I would have to go through to become normal again.

Dr. Shapiro and Kevin explained to me that my nerve endings had to be reset to respond to normal stimuli.  In a way it was like rebooting a computer when it freezes up.  I was enthusiastic about this.  I was sure I could do this physical therapy.

To reset my nerves I had to desensitize them.  My mother, who is a registered nurse, would have to rub four textures (cotton ball, cloth, hand, and wet cloth) around my knee for 1 minute each four times a day.  Surely this would be easy.  It was not.  The cotton ball felt like fire.  Like a blow torch to my skin.  Soft cotton.  I would scream, cry, and scream and cry through out the whole process.  It was torture.  The disorder had progressed to where any stimuli to my knee – a soft breeze from a fan, a blanket or simply a change in temperature would cause excruciating pain.  I was miserable.  I was in pain 24 hours a day.  On a pain scale of 1-10, 10 being the worst, I was at a 15.

At first I was driven to defeat this disease.  I would persevere.  I was ready for the pain.  Even though there was pain, I would somehow get through it.  I would fight it.  I would think, ‘One less day of pain if I get through this therapy right now, one less day of misery’.  I would persevere because I knew somewhere there was a brighter side to all the pain and misery.  This began to work.  I began to think that I was winning.  But soon the disease spread to my lower leg and foot.  My mom would continue the desensitization treatments.  She would not give up, but I felt I was giving up.

I remember what it was like to feel at times hopeless.

I didn’t know if I could take it.  I began to slack off and lose faith.  The reactions to my slacking meant more physical therapy and more unbearable days.  Victories turned into defeat which led to frustration.  I was becoming frustrated that I wasn’t getting better.  Actually, I was getting worse.  I would pray.  But at one point I was ready to give up.

As time went by I thought about giving up.  I literally wanted to give up and let the RSD take its course.  It was too much work and effort to overcome this.  I couldn’t deal with the pain.  I couldn’t fight it and win.  My mom and dad tried to snap me out of this sorry state I was in.  We had a huge shouting match.  “Emily do you want to walk again?  Without crutches!  Do you want to be in pain the rest of your life?!  Do you?!”

Ever since I was little I told myself to never give up.  To always try my best.  I couldn’t give up.  I didn’t want to be like this for the rest of my life.  I didn’t want to be in this pain and misery for the rest of my life.  I was going to persevere through prayer, faith and determination.  I gave myself no other choice.

Perseverance isn’t something that just happens.  It’s something that you decide to do because you leave yourself no other choice. But you have to back it up with prayer, faith and determination.

This is what I did.

I decided that I had no choice but to walk normally again and to become pain free.  The next day, I had my physical therapy appointment.  I went into my physical therapist’s office and told him to push me hard.  I had made my decision to get rid of this disease.  And that is where my real perseverance began.  I’m not saying it was easy after I had made my decision.  It actually got harder before I got any better.  In addition to the desensitization, I was doing 4-5 hours of physical therapy each day, constantly moving and stretching my leg.   If my physical therapist told me to do something for one minute, I would increase the time for an additional 15 to 30 seconds.  It was never easy and the pain was always there.

Thanks to God, my mom and dad, my sister, Dr. Shapiro, Kevin McHorse, the Physical and Occupational Therapists at Brackenridge Children’s Hospital and everyone who encouraged me I was able to overcome the RSD.

In several years or so I might not remember every detail of my experience with RSD as I do now, but I will always remember the lesson I learned about perseverance and prayer.

Everyone who has RSD/CRPS/RND has a different story.  But in kids, teenagers and young adults, the key is to be diagnosed early and to begin some sort of treatment as soon as possible.  There are still cases of RSD being misdiagnosed and labled as a “psychological problem” by some doctors.  It’s important to find a doctor with experience.

RSD Heroes is here in the hope that anyone reading my story or the stories of other teenagers or young adults with RSD  will be encouraged to keep on fighting, to persevere.

Tagged as: rsd athletes, rsd awareness, rsd heroes, rsd in teens