Washington Post: The Strange Pain That Can Overcome Kids, Especially High-Achieving Teenage Girls
Angie Friesen didn’t think much of it when her sixth-grade daughter, Annelise, told her she’d hit her elbow on a desk at school.
It wasn’t until about a week later, when Annelise complained of pain from her elbow down to her hand, that the mother of four took her daughter to the family doctor for an X-ray.
Nothing was broken.
The pain continued. Within a few months, it had spread to Annelise’s shoulder blade. Another X-ray and a nerve study revealed no damage.
Finally, a pediatrician gave a diagnosis.
“I hate to even say the word,” Friesen remembers the doctor saying. He suspected her daughter had a condition called CRPS, or complex regional pain syndrome. In adults, the condition can be devastating, with burning pain that spreads, discoloration of a limb and the loss of function.
Friesen’s pediatrician apparently didn’t know it at the time, but children with CRPS often respond well to treatment, especially in rehabilitation programs dedicated to treating chronic pain syndromes, sometimes called amplified musculoskeletal pain.
But early stages of the condition can perplex families and physicians. There is no simple test: A diagnosis, when it is made, is based on symptoms. When conventional treatments provide no relief, these symptoms are exacerbated and patients can slip into a cycle of pain and loss of function, driven by overfiring nerves and constricting blood vessels.
When children stop doing what they usually do — going to school or walking without assistance, for example — nerves become even more sensitive, creating a feedback loop comparable to what happens when a microphone is set against a speaker. Just as a small sound grows louder, the child’s pain is amplified.
Cara Hoffart, director of the Rehabilitation for Amplified Pain Syndrome Program (RAPS) at Children’s Mercy Hospital in Kansas City, Mo., said the typical patient is a teenage girl with a “10 out of 10 pain.” Many are high achievers who maintain good grades even when they miss school. Those not in wheelchairs, or whose pain comes and goes, are often misunderstood and dismissed.
“Every patient I have ever met has been made to feel that the pain is all in their head,” she said. “Someone doesn’t believe them.”
But the pain is real.
Annelise’s pediatrician in Andover, Kan., said there was not much he could do and sent the family to a neurologist who put the middle schooler on a drug used for epilepsy. It made Annelise extremely sleepy, and the pain spread to the tips of her toes. By the second week of seventh grade, her entire body hurt, a sensation she described as being cold and on fire at the same time. Her skin turned blue. The wind at her brothers’ football games became excruciating; even the air produced when people spoke was a problem.
“She asked us to face a different direction because our breath hurt and caused her pain,” her mother said.
Soon, she needed a wheelchair. She stopped talking and sank into a depression.
“I just want to be with Jesus,” she told her mother. “There is no reason for me to live.”
Children with amplified pain are often bounced around from pediatrician to rheumatologist to neurologist to orthopedic surgeon and to the emergency room, according to Hoffart. Most undergo unsuccessful treatments, including exploratory surgery, steroids, opioids, nerve blocks, epidural morphine and electric nerve stimulation.