Abdul puts syndrome in spotlight
By Elizabeth Weise, USA TODAY
American Idol judge Paula Abdul has come forward to say she has been battling an obscure, difficult-to-diagnose pain syndrome for the past 25 years. That publicity has raised hopes that the condition, called complex regional pain syndrome, may finally get the medical recognition it deserves.
Abdul, the focus of controversy this season because of allegations of an inappropriate relationship with former contestant Corey Clark, made the announcement last month. She said her occasionally hyper-animated behavior on the show was caused by her joy at finally being pain-free.
But no matter the questions surrounding Abdul, the condition is very real.
First described by a doctor treating soldiers with cannonball injuries in the Civil War, the syndrome has gone by many names over the past 150 years: Causalgia in soldiers, reflex sympathetic dystrophy syndrome in civilians, and today, complex regional pain syndrome (CRPS) types I and II.
CRPS happens when an injury to a nerve, often on the hands, feet or legs, causes the nervous system to begin behaving erratically. It frequently spreads from a single injured digit to the entire arm, leg or throughout the body.
The sympathetic nervous system â the fight-or-flight nerves â is “trying to heal itself and it gets confused,” says Pamela Palmer, who directs the pain management center at the University of California-San Francisco. “It starts sending out chemicals that hyperactivate the regular nervous system.”
Symptoms typically show up about a month after the initial injury. Instead of getting better and being in less pain, the patient feels more pain.
For many patients, it takes months, if not years, to get an accurate diagnosis. During that time, they’re frequently told that “it’s all in your head,” says Tom Looker of Winchester, Va. A former immigration agent, he fell down an embankment 20 years ago and has been in pain ever since.
The syndrome’s hallmark is agonizing, burning pain. In the worst cases it can attack the bone, skin and muscle, leaving patients with useless, withered and extremely painful limbs.
For reasons that are unclear, the syndrome affects women twice as often as it does men, says Joshua Prager of the Center for Rehabilitation of Pain Syndromes at UCLA.
Doctors don’t yet know why it happens, and they don’t know why it happens to some people and not others. What they do know is that early and aggressive treatment â within the first three months â is the key to stopping it.
Treatments include anesthesia injections to block the sympathetic nervous system and, in extreme cases, insertion of a catheter so continuous doses of anesthesia can be administered. For some patients, electrical stimulators are implanted in their spines to block the pain.
But the end goal is not pain relief but to get patients comfortable so they can start moving again.
“The core of treating these patients is ‘Use it or lose it,’ ” says James Rathmell, a professor of anesthesiology at the University of Vermont. “You need to use the limb â no matter how painful â because otherwise you’ll lose function.”