My name is Betsy Herman, and I'm 18 years old.  When I was 12 years old, I stepped the wrong way.  I had been chasing a volleyball, and I jammed my left ankle a little.  I don't know if it would even have been considered a mild sprain.  A week or so later, I pulled a muscle in my right shoulder while playing the violin.  Two injuries that were so minor I probably wouldn't even remember them right now...except that for me they were significant. It seems  ridiculous to think that a little hurt ankle could result in the disease that bothers me today!

After years of pain, misdiagnosis, and sheer torture at the hands of the clueless and who I thought were extraordinarily cruel medical professionals, I was finally diagnosed with something called reflex sympathetic dystrophy.  It's called RSD for short, though there are a lot of other names for it.  Apparently everyone who saw it wanted to name it something different!

RSD is a disease that starts after an injury.  When you get hurt, the part of the nervous system that responds to start the healing process is called the sympathetic nervous system.  When its job is finished, the sympathetic nervous system's response is supposed to stop.  But in a person who gets RSD, it doesn't.  Instead, it overreacts to the injury, and it doesn't turn of when it's supposed to.  The result is a LOT of pain, swelling, discoloration, temperature changes, and other stuff.  RSD starts in the injured area, but after a while it spreads.

When I first got hurt, I thought it would be like any other time.  Boy, was I wrong!  The pain got much worse instead of better.  After a couple of weeks with my ankle still hurting, I started going to doctors.  I went from doctor to doctor to doctor.  Most of them were not exactly nice...ok, ALL of them were pretty horrible!  Some of them just looked at me funny and said that they didn't know what it was.  Some of them told me that it was nothing, but when I was out of the room, they told my mom that I was exaggerating or faking it.  Lots of them said that I was making up the pain for attention.  Well, I wasn't!  I was insulted, and I went without treatment for almost FOUR years!

When I was finally diagnosed, it was too late to put the RSD into remission.  If RSD is treated in the first 3 to 6 months, it can almost always be put into remission.  But if it's not treated in that time frame, it's almost impossible to put into remission.    I want to be a doctor when I grow up so that I will have the power to protect the lives of kids who get RSD. The power to do for others what was definitely NOT done for me!

Now my RSD has spread to almost every part of my body.  My left leg is the worst.  RSD is not only an extremely painful disease, it's also crippling.  My left foot is twisted, so I can't step on the bottom of it.  I limp very badly, and I have to wear a brace to try to straighten out my foot.  It doesn't work that well, but it makes it so I can wear shoes without falling!  I've had lots of treatments.  I've had sympathetic nerve blocks,  procedures to numb the nerves in the sympathetic nervous system.  They helped somewhat, for a short time.  I had epidural infusions, too, which are nerve blocks done with a catheter (tube) and pump to allow relief for a longer time.  The ones for my arm worked pretty well, so I can use my right arm again.  The one for my leg only worked while the catheter was in, so I had to have surgery to implant a device called a spinal cord stimulator.  I have that now, and it helps, though it doesn't work as well as it should.

Of course through all of this,  I had to go to school.  When my RSD started to get bad, I started to have problems.  By the end of eighth grade, kids who were my friends started to be mean to me, and I don't know why.  I think it must have had something to do with my RSD...which I didn't even know was RSD then!  Kids would purposely try to hurt me, because they thought it was funny that just tapping my arm would make me cry.  In 10th grade, after I had been diagnosed and had already started treatment, I had to stop being in the hallways with the other kids.  Too many people would hurt me just for the fun of it.

I had to see doctors in a different city, which meant taking a 100-mile drive almost every week!  I had physical therapy three times a week, which meant I missed even more school.  My teachers were mostly very understanding.  Some of my medications made me sleepy, especially when I had an epidural infusion going.

This year, things are just as bad.  I don't have physical therapy now because my old PT (who was the BEST...he was so much fun) quit, and another place won't work with me because I didn't respond to the therapy. Though I don't have very many friends at school, some kids are nice.  I spend a lot of my time running an online support group for kids with RSD.  It's really nice to be able to talk to other people who understand! 

I want to make more people aware of what RSD is and what it does to us.  Maybe then more people will get diagnosed in time, and they won't have to live with it for such a long I do!

Thanks for reading my story. You may be interested in visiting a web site I designed to help other kids with RSD. Hope that you'll be in touch. Betsy

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Created: November 14, 2004