© 2005 Estate of Pablo Picasso/Artists Rights Society (ARS), New York
One Tuesday morning in March 1990, 19-year-old Shannon Leidig, a freshman music therapy major at Virginia's Shenandoah College and Conservatory of Music, woke up with a burning, throbbing pain in her right hand. The skin felt waxy and was sensitive. Not knowing what to do, she went to the university nurse. "They thought it was carpal tunnel syndrome, possibly a strain caused from playing too much piano or guitar," says Leidig. Her piano teacher thought Leidig was trying to get out of lessons. Doctors thought it might heal itself overnight and applied a splint. Within 24 hours, however, Leidig lost use of the hand. She was scheduled for orthopedic surgery by the week's end.
As Leidig recuperated, the other hand grew tender and red, swelling like a balloon. She began to doubt her sanity. Two weeks later, after another surgery, Leidig was left unable to care for herself, sleep, or eat normally. While recovering, a shooting pain erupted in her legs.
Doctors at Baltimore's Good Samaritan Hospital interviewed her over the phone asking Leidig to describe the pain and diagnosed her with reflex sympathetic dystrophy (RSD). An emergency appendectomy in high school, they suggested, might have triggered the condition. But even today, doctors aren't certain what caused it. "It's a very frightening disease. There's no tests, no concrete thing to show you have it. Doctors don't know about it, and patients are very misinformed," says Leidig.
For the past 15 years, Leidig's pain has crippled her body, altered her career choices, strained her relationships with family and friends, and led to a divorce. Today, she receives treatments that give some relief, but it took time to find doctors who took her pain seriously.
Through her twenties, most of Leidig's family didn't believe the pain was real. It was mainly her mother, Mary Ann, who offered the moral support to deal with the day to day. Friendships, too, dwindled when people wouldn't accept that her condition was chronic. "After a while, people weren't willing to help," says Leidig.
Leidig married after the pain started, but ultimately realized that her husband – an active, outdoorsy Navy submariner – didn't understand. He demanded she do things like housework and hiking regardless of doctors' recommendations. Eventually, their marriage crumbled.
Leidig's RSD, a type of complex regional pain syndrome, also stopped her from pursuing her dream to become a music therapist. Nevertheless, six years after the pain began, a determined Leidig graduated cum laude from Shepard's College in West Virginia majoring in psychology, with a music minor. Today, she directs an adult and men's choir at the Methodist church where her father is a minister. She also works from home doing medical transcription and administrative tasks.
Her path to effective treatment has been tumultuous. After being diagnosed with RSD, some doctors still thought Leidig was faking. Initial treatments with high-dose steroids and antidepressants made Leidig irritable, and she went from 105 to 190 pounds in less than three months.
After 10 years of treatments, Leidig met doctors at Maryland's Bethesda Naval Hospital who she says believed in her pain. She's since tried acupuncture and physical therapy, and nearly died once when administered excessive doses from a morphine pump. In all, she has undergone 12 surgeries and has had spinal cord stimulators implanted in her arms and legs to block pain signals to the brain. Only treatment with sympathetic nerve blocks gives her some relief.
The pain in her hands just dissolved one day, she says, but her leg pain – beginning at the hipbones, and running through the front and back of her legs to her toes – has never plateaued. "It feels like a volcano about to explode 24-7. It never eased up, even with medication. I never have a day without pain," says Leidig.
Today, Leidig enjoys playing piano to relax. Yet she still cannot let Aria, her energetic bichon, sit on her lap. Leidig maintains a normal weight and receives treatments at least three times a month from physicians in Hagerstown, Md., and Johns Hopkins University. Leidig also co-coordinates Maryland's "Power Over Pain," a public awareness campaign funded by a grant from the American Pain Foundation that spreads information about the problems of chronic pain and supports patients, caregivers, and others affected by pain. She doesn't want pity – just a little understanding. "We want people to realize, we are not just our diseases, we're people too."