Rare disorder of overactive nerves often misdiagnosed
By Craig Smith
Tuesday, January 8, 2008 Jodi Meehan went to 27 doctors, physical therapists and holistic practitioners over six years, trying to find a way to ease the pain that wracks her body.
“I was searching for something, anything, to help,” said Meehan, 48, of Somerset, who developed Complex Regional Pain Syndrome, or CRPS, after an intravenous needle was inserted into the back of her hand.
She’s in constant pain. The pain that began in the back of her hand spread up her arm, she said. Her feet started to swell and became discolored. She suffered from headaches, back and neck pain. Her tongue and eyes often swell.
“It never lets up,” Meehan said.
Symptoms of the disorder, also known as Reflex Sympathetic Dystrophy, often are not recognized by doctors, said Paulette Anderson, who has lived with the disorder since 1998, when she kicked the bottom of her bed and broke the fourth metatarsal on her right foot.
“It usually takes five to 10 doctors to figure out what it is,” said Anderson, who started a support group in the Mon Valley eight years ago that has about 200 members.
Pain affects more than 50 million Americans and is often improperly assessed, misdiagnosed, mistreated or undertreated, say members of Congress who are pushing a national pain-care policy.
U.S. Rep. John Murtha, D-Johnstown, is among 32 cosponsors of legislation introduced in July that would create a pain consortium within the National Institutes of Health. Lawmakers want the office to improve pain research, education, access and care.
The legislation will be considered in this legislative session, said Sylvia Warner, spokeswoman for U.S. Rep. Mike Rogers, D-Mich., the bill’s chief sponsor.
“It won’t cure anyone,” Warner said. But the pain-care policy could result in more pain therapy education for doctors and raise patients’ awareness, she said.
CRPS is an overactivity of nerves that almost always follows some form of trauma, such as an injury or surgery, said Dr. Stephen Conti, director of the division of foot and ankle surgery at Allegheny General Hospital in the North Side.
“The initial diagnosis is difficult. When is it a sprain, plus CRPS, or just a sprain?” Conti said.
There is no test for the disorder.
Carla Temlin, 54, of Belle Vernon often has to wear a glove on her right hand, even in summer, because her right arm is colder than her left.
“Most people don’t know what they’re in for when this starts,” said Temlin, who developed the disorder 14 years ago after breaking her elbow.
The syndrome is classified as a rare disorder by the government, with fewer than 200,000 cases reported each year, said James Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association of Milford, Conn.
Remissions of CRPS symptoms do occur in some people, according to the National Institute of Neurological Disorders and Stroke.
Meehan eventually found a doctor at Drexel University in Philadelphia who specialized in CRPS.
“It was such a relief to have somebody understand you and not think you’re a freak,” she said.
Lidocaine treatments are having some success.
“I can feel my legs and feet for the first time in years,” she said.
Craig Smith can be reached at email@example.com or 412-380-5646.