In chronic pain for 14 years

It's not something that others can easily see

It's not something that others can easily see

September 19, 2004|by Shannon Leidig

(Editor's note: The author is a chronic pain sufferer who lives in Washington County. She wrote this as part of the educational component of Pain Awareness Month.)

Who would ever have thought that my life would change forever on Tuesday, Feb. 13, 1990? Until then, I was a normal college student, majoring in music therapy and piano at Shenandoah Conservatory.

That morning I awoke with my hand in severe pain and very swollen and waxy looking. The pain was so intense that I could not finish my piano practice. A nurse gave me ibuprofen and said if it didn't improve, I might have to see an orthopedic surgeon.

That night, my friends and I went to Subway. Ever try to eat a sub with one hand? Not very pleasant, but necessary, because my right hand was in severe pain. I did not sleep that night or go to class the next morning. It was the worst pain I had ever felt. Little did I know it would get worse.


At week's end, I went to see the surgeon, who thought it was carpal tunnel syndrome. She splinted my hand and gave me medication. Over the weekend the pain became even worse, so I saw her again on Monday and had a cortisone injection, which hurt like heck! I then had nerve conduction studies and was told my hand was "dead."

I was scheduled for a carpal tunnel "release" Feb. 22. When they came to prep me for surgery, they tried to scrub my hand. I could not tolerate even the slightest touch. I was sedated so they could finish prepping me.

As I recovered from that surgery, the pain in my right hand was still intense, but then my left hand began to hurt. Even closing a cupboard door or driving over a bump in the car would bring me to tears.

My surgeon knew something was going on, but could could not understand what. She knew she had to alleviate the pain in my left hand, so I ended up having carpal tunnel surgery on that one as well.

My left hand was bandaged like a boxing glove and I still could not use my right hand. I could not feed myself, bathe or even go to the bathroom by myself - very humiliating for a 19-year-old. My father would feed me like a baby, but my mother ended up doing everything else.

I recovered at home from both of these surgeries. Then both feet started to hurt. Now, I thought, I am really starting to lose my marbles.

I ended up going to Good Samaritan Hospital in Baltimore. In late March they called and asked me all kinds of questions about the pain, the color of my skin, if it were waxy, if my extremities were red or blue or if I was sensitive to touch. They diagnosed me with Reflex Sympathetic Dystrophy Syndrome and I became a patient there.

They put me on high doses of steroids and antidepressants, stating that it would help "ease the pain." The drugs made me eat and become a very nasty person,

I was discharged after 10 days and returned to college. Friends helped to catch me up on what I had missed. I finished the semester but it was very difficult.

My medications sent me through many mood changes. One night I cursed out my mother. I was so angry I ripped the phone out of the wall and said that I wished she was the one who was sick. I regret that comment to this very day.

By Memorial Day, the pain had spread up both arms and all the way up both legs. I could not walk, so I used a wheelchair. I became a patient at Good Samaritan again.

The doctors thought I was crazy and brought in psychiatrist after psychiatrist. Being on steroids also increased my appetite, so I went from 105 to 190 pounds. Talk about embarrassing!

I went to another physician who took me off all of the medications and began performing nerve blocks, both stellate ganglion and lumbar sympathetic blocks. For the first time in months, I had some relief.

This doctor believed me, which was a huge help. He and his staff encouraged me to go back to school and to continue to do things, being mindful of my limits due to the pain. I transferred to Hagerstown Community College and Shepherd. I was determined to obtain my degree and have a life. It took me six years, but I graduated cum laude with a bachelor's degree in psychology, and a minor in music.

I am now 33. I still have RSD, although it has a different name now - Complex Regional Pain Syndrome. I have seen many doctors at the nation's best hospitals. Some believed me, some didn't! I have been on many medications. Some helped, some didn't.

Once I almost died due to an overdose. I have had numerous surgeries and yet the pain is still here. It has never gone away!

The pain in my arms and hands is almost nonexistent now, but my legs are a different story. The pain shoots and burns, as though a volcano will erupt inside. And my legs jump inside, like jumping jelly beans. The intensity of that and the pain brings me to tears.

I do not drive much because I do not trust my legs. They are not strong and I lose sensation and would not want to cause an accident.

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