Anna & Michelle Kennedy
Originally uploaded by rsdscrpsnews.
Posted May 21, 2005
Overcoming the pain
Oshkosh teen in recovery from chronic pain illness
By Krista B. Ledbetter of The Northwestern
Anna Kennedy cried almost every day of physical therapy. Youâre not supposed to relearn how to walk as a sixth-grader, she said.
But physical therapy wasnât the hardest part. Most people didnât believe anything was wrong with her.
âEveryone thought I was lying,â Kennedy said.
She learned who her friends were, said her mother, Michelle Kennedy.
And the staff at Fox Valley Physical Therapy became her social life.
Anna Kennedy, 15, of Oshkosh broke her ankle five years ago, but a sprain of the same ankle one year later triggered a neurological syndrome called chronic regional pain syndrome that sheâs still affected by now as a freshman at Oshkosh North High School.
CRPS is a chronic pain disorder involving a dysfunctional response of the nervous system that may develop from a traumatic injury or a period of immobilization.
Steven J. Weisman, medical director of the pain management program at Children’s Hospital of Wisconsin, said CRPS develops in both children and adults and tends to occur in one of the extremities.
âIn kids itâs most common in the lower extremities probably because those areas get injured more, said Weisman, who treated Anna Kennedy.
The hallmarks are that you might have an injury, such as an ankle sprain, and when youâre healing up from the original injury your pain gets worse and changes in quality.â
In Anna Kennedy’s case, her right ankle up to almost her knee became engulfed in what she described as a burning pain.
The slightest touch, even the faint rub of a Q-tip, seared, she said. She endured the pain, which left her on crutches, for a year and a half before entering remission three years ago.
But Michelle Kennedy said the battle to reach a diagnosis, an understanding and a treatment, nearly matched the battle to reach remission.
Her daughter suffered unbearable pain following the sprain, and as the two watched the affected ankle turn from purple to bright pink to ash within minutes one day, Michelle Kennedy became a âmom on a missionâ to discover what was happening.
Anna Kennedy’s doctor told them it looked like reflex sympathetic dystrophy, another name for CRPS, but it would take a neurologist to determine this diagnosis for sure.
âI was scared to death. I read about (CRPS) online, and I thought my daughter would be dead from pain and all the medication it required, Michelle Kennedy said.
It took weeks to deal with doctors and finally see professionals at Children’s Hospital, and in the meantime, people in Anna Kennedy’s elementary school began thinking she faked the pain and teachers often took her crutches away.
Her grades plummeted from A’s to C’s, and in time she became depressed. She took any over-the-counter medicine she could to lessen the pain so she could sleep at night.
Once a neurologist at Children’s Hospital confirmed her diagnosis, Anna Kennedy began physical therapy to retrain her muscles, and essentially relearn to walk.
The months of immobilization began to atrophy the muscles in her leg.
If the illness is not treated, the person will lose function of the extremity, Weisman said.
I teach people different cognitive behavioral management techniques, like breathing, meditation, self-hypnosis, all of which work together to get the mind off of the pain and to get the brain to perceive the pain as less intense.
According to the Reflex Sympathetic Dystrophy Syndrome Association, people between ages 25 and 55 most commonly suffer from CRPS and it is more frequently seen in women.
There is no cure for the physical disease, but advances in research have found more effective treatments, such as medications, nerve blocks, physical therapy and psychological support.
I think CRPS is more common than we would normally guess, Weisman said of the disease, which affects as many as six million Americans.
It’s one of the most common diagnoses in the pain center.
Anna Kennedy has suffered little-to-no flare-ups of the pain, she said.
In eighth-grade she played on the basketball team and last fall, she wore high heels to a formal dance both things she thought she might never do.
Anna Kennedy will pass another milestone this year when she turns 16 years old and gets her driver’s license.
My anger turned to tears of joy and relief, said Michelle Kennedy, who has since started a Web site for family and friends of people with CRPS.
But I feel such sorrow for other people going through this.
About 200 members have joined the support group on the Web site, she said.
Orange bracelets also are being sold to promote awareness and to benefit RSDSA.
People don’t understand the pain, the sleepless nights, the worry; but we got through this, Michelle Kennedy said.
I keep saying we, but really, Anna got through this.
Krista B. Ledbetter: (920) 426-6656 or email@example.com.
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