The pain might start after bumping an elbow on a kitchen counter. Or maybe the incident was more minor than that, and went completely unnoticed. But for some people, what begins as "nothing" converts to searing pain over part or all of the body.
"If you sprain your ankle, the nerves should turn off after a while once that's healed, that pain signaling should die down. But if you have a chronic pain syndrome, the nerves don't get the memo to turn off," says Cara Hoffart, a rheumatologist at Children's Mercy Hospital.
The result is something clinicians often refer to as Amplified Pain Syndrome, though it's sometimes called juvenile fibromyalgia or central sensitization syndrome.
Because the patients who experience this syndrome don't appear to be ill, the pain is difficult to understand and to treat. But it couldn't be more real to those experiencing it, of whom 80-85% are female. Often, by the time patients receive the diagnosis, the pain has gone on for months or years, and this makes it difficult to estimate just how many people suffer from the problem.
Hoffart is part of the team in the Rehabilitation for Amplified Pain Syndrome Program at Children's Mercy. It offers intensive physical and occupational therapy, relaxation techniques, stress-management training, and music and therapeutic art in three to four-weeks sessions.
Only about seven states have hospitals with similar treatment programs. Those include Children's Hospital of Philadelphia, the Cleveland Clinic, Providence Medical Center in Nebraska, and Benioff Children's Hospital in San Francisco.
"When you're a physician you're taught to treat illness, so pain isn't necessarily viewed as an illness, it's more of a symptom, and that's where that conundrum is, right? Is pain a symptom or is it an illness? In our case as chronic pain physicians, it's both,” says Andrea Nicol, an assistant professor at the University of Kansas Medical Center who specializes in anesthesiology with a sub-specialty in pain medicine. Unlike Hoffart, Nicol sees mostly adult patients.
Patients in the Children’s Mercy program are in varying degrees of distress. Hoffart says some have extreme pain in their limbs and experience nausea and vomiting.
One 16-year-old she saw had suffered for years and was using a wheelchair, though no test could find a physical cause. The teenager had been unable to tolerate water or even a light breeze on her legs for more than a year, had stopped going to school and had lost all social contacts. She was depressed and anxious.
Children's Mercy's proposed treatment plan for patients like this was included on a March 9 broadcast of an NPR podcast called Invisibilia. As experts explained on the podcast, at the core of the plan is a sort of retraining of the brain that initially might sound harsh: move even if it hurts.
Producers of the podcast heard from many listeners who didn't like what they'd heard. Some listeners were concerned that the show's guests might be suggesting the pain was all in their heads. That was not the intended message, and the producers added a follow-up message to that effect.
The brain is involved, but the pain is real.
If someone has a sprained ankle, walking is painful. For the person with Amplified Pain Syndrome, putting weight on an ankle, for example, might still hurt, though the bones and tissues are in good shape. Should the person with no apparent injury continue to walk?
Nicol, Hoffart and members of the Children's Mercy team say yes. They have learned that the nerves and brain must receive the message that nothing bad happens if the person walks on the ankle anyway.
"If you start to walk, and you keep walking because you know it's your amplified pain, and your tissues are healthy, your bones are healthy, you are generally healthy, then if you keep going you’re eventually teaching your nerves and your brain what is and isn’t dangerous, and so it's a decision-making that can actually start to affect the way that your brain interprets pain signals," she says.
Hoffart says that within days of working with the girl in the wheelchair, clinicians had her walking and in a swimming pool in spite of the pain each step and the feeling of the water caused. She eventually left the wheelchair, returned to school, and is now in college. Hoffart says the patient still struggles with pain, but that now it's manageable.
This type of medicine is attractive to Hoffart, because she can help some very disabled patients regain normal functioning without unusually potent medications or invasive procedures.
She says she understands people's concerns when they hear about a treatment plan that involves asking patients to do hard things.
"What you don’t necessarily hear is the amount of empathy that our team has," she says, "and the way that we really connect to our patients and their families in a way that I think other medical professionals in other specialties don’t get to do."
Cara Hoffart and Andrea Nicol spoke with KCUR on a recent edition of Central Standard.
Editor's note: An earlier version of this story suggested that the treatment approach at Children's Mercy works for patients "most of the time." To date, evidence of the success of this emerging treatment is anecdotal rather than statistical.