12/04/2013 01:23 pm ET Updated Feb 03, 2014

CRPS: A Medical Mystery, Demystified

When you first meet Matthew, you notice his thick brunette hair, evoking images of James Dean or Robert Pattinson. The teenager's lean 6-foot, 2-inch frame, striking features and quiet confidence make him appear the picture of health, but looks are deceiving. Matthew hides a secret that makes him want to scream in agony because that's the intensity of the pain he suffers in his left foot. When he explains what is wrong, he worries people won't believe him because, by all outward appearances, nothing is wrong. It's what is happening inside, of course, where the problem is very real. In the simplest terms, his condition, known as Complex Regional Pain Syndrome (CRPS), is an endless pain loop in permanent overdrive. In Matthew's case, a sprained ankle, an otherwise insignificant injury, set off an unusual chain reaction in his nervous system. The physical injury itself healed but the pain inexplicably lingered and intensified. A constant misfiring of nerves sends steady, searing pain impulses to his brain. Merely blowing on Matthew's foot causes him unbearable agony. Those impulses sometimes actually lead to physical changes, with his foot becoming cold to the touch, discolored and swollen.

Matthew has suffered with this mystery illness for five years, since he was 11 years old. He describes the feeling like "a boa constrictor tightening around your foot while it is being stabbed with a knife from the inside and simultaneously set on fire." I have witnessed his agony firsthand, because Matthew is my son.

The syndrome is often hard to diagnose and harder still to treat. Dr. Elliot Krane, professor of anesthesiology at Stanford School of Medicine and Director of the Pain Management Program at Packard Children's Hospital at Stanford, has dedicated much if his life to helping CRPS patients who are too often overlooked, misdiagnosed or simply dismissed. Dr. Krane, one of Matthew's many doctors, specializes in pediatric CRPS. These cases are the most heartbreaking because his young patients come to him confused and feeling hopeless. Many, like Matthew, become depressed and say the pain can make living almost unbearable. But Dr. Krane, whose preeminent program at Stanford is one of only a handful in the United States treating CRAPS, attacks the illness on many levels. The regimen includes intense physical therapy, occupational therapy, medication and psychology. His patients also receive tutoring since many of these kids often miss months or even years of school, staying home in isolation.

I interviewed Dr. Krane for the syndicated television show Inside Edition, in an effort to raise awareness about this unusual illness. Matthew was at first reluctant to come forward and talk on camera but I explained that it would not only validate what he has been saying about his experience for the past five years, it might also help someone else who is suffering in silence. It was difficult, as his dad, to listen to him describe the pain, but his honesty made me proud and his articulate insights surprised me. "I am actually glad I got this," Matthew said. "It's made me stronger and who I am today."

Even among physicians these cases are often missed. "A typical pediatrician can go their entire career without seeing or recognizing a single case of CRPS," says Dr. Krane. Many patients, both kids and adults, are often dismissed as exaggerating their pain, leaving them withdrawn, frustrated and feeling lost. "CRPS is widely misunderstood -- a lot like epilepsy used to be. At one time, patients were burned at the stake as possessed. Years later they were institutionalized and finally medications were used to treat patients." While adult cases are more problematic, Dr. Krane believes that pediatric cases, properly and aggressively treated, are virtually curable. For patients like Matthew, whose pain goes into remission for long periods interrupted by sudden and violent relapses, the mere promise of a cure offers something that once seemed impossible -- hope. That's what happens when disbelief and fear are replaced with knowledge. Frustration gives way to a workable plan of attack against an insidious and often invisible threat. A medical mystery is demystified.