Overcoming the Pain: Shannon’s Story

The road to graduation was a long one for 18-year-old Shannon Reilly, but this past June, this inspiring young dancer and Senior Class President defied all odds and walked across the stage to receive her diploma.

It was a moment her mother, Marguerite, captured on film and later shared with Dr. William Zempsky, division head of pain and palliative medicine at Connecticut Children’s Medical Center. According to her, Dr. Zempsky and the team of experts at Connecticut Children’s was the reason her daughter was able to cross that stage in the first place.

“It is hard to express the degrees of pride and elation I experienced when I viewed Shannon’s graduation speech for the first time. Shannon’s recovery is in no small part due to her own resilience and perseverance” said Dr.  Zempsky. “Shannon utilized our interdisciplinary approach taking advantage of pharmacologic, physical and behavioral approaches to conquer her pain. There is no straight line to recovery but Shannon weathered a difficult course with grace to become the remarkable young woman she is. “

That difficult journey began when Shannon was in 6th grade and began experiencing back problems. “We thought there were different causes including my bed, backpack, and long dance rehearsals. We tried changing little things everyday but nothing was working,” explained Shannon.

When the pain became too much to bear Shannon was taken to a local emergency room, but left without any answers and more confused than ever. As the days passed, Shannon’s pain worsened and that Wednesday she was taken by ambulance to Connecticut Children’s where an urgent appointment was made with Dr. Mark Lee of orthopedics.

“After visiting with Dr. Lee, he diagnosed me with Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (CRPS/RSD). CRPS is caused by a hyperactive nervous system that causes a long-term, constant, extremely intense pain, out of proportion to the original injury. Stress and anxiety also played a big part in my diagnosis.”

Following her diagnosis, Shannon immediately began physical and physiological therapies, as well as aqua therapy, allowing her to continue treatment when her hip pain was at its worst. Each and every week, for seven straight years, Shannon went to her therapy appointments consistently. She was committed to overcoming her pain and her care team was right beside her, helping her to do so.

“When you have CRPS, the last thing you want to do is move whatever hurts. Whenever there was a new part of me that hurt, I wasn’t very compliant. But after going through physical therapy consistently I started telling myself that moving whatever was hurting was the good kind of pain.”

Throughout those seven years, Shannon experienced varying degrees of pain as a result of her Complex Regional Pain Syndrome and was homebound for her freshman year of high school. These flare ups made it more and more difficult for Shannon to participate in activities she loved…like dance. However, she kept motivating herself to try new things, when and if she could. She didn’t let her disease slow her down.

“Shannon is a strong, determined young woman, but a condition like RSD can sometimes make it tough to push through the pain” said Marguerite. “Dr. Zempsky and his team never let Shannon give up. They believed in her, supported her and knew what needed to be done to heal her. Because of them, she walked across that stage on graduation day.”

“Connecticut Children’s is phenomenal…just absolutely phenomenal.”

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