Chronic sufferers push for awareness
'Idol' judge draws attention to causeBY
WILLIAM MOYERPress & Sun-Bulletin
The burning pain can attack with a red-hot intensity that feels like the skin is ablaze.
"It's like you take lighter fluid and set yourself on fire," said Cheryl English, a 45-year-old Vestal resident who suffers from
Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome. "It's a burning pain that doesn't go away."
American Idol judge Paula Abdul recently put the disorder on center stage when she attributed her erratic behavior on the televised show to the disease, not drugs as some had said. Abdul, 42, said she has suffered from chronic pain for 25 years, after a cheerleading accident and several automobile accidents. Abdul was diagnosed in November, she said, and medication has helped managed the pain.
The disorder is life-changing."You're forever living around it because you can't go anyplace," said English, a wife and mother of two grown children. "You live with it; you don't control it. The disease controls you."
Since she was diagnosed about 13 years ago, English has gone from an active life that included sports, dinner and dancing to sedentary nights of watching the family's wide-screen television. Sometimes, she stays in bed all day because the pain rules her world.
CRPS/RSDS is a neurological disorder characterized by burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch, according to the Reflex Sympathetic Dystrophy Syndrome Association in Milford, Conn.
The disease can arise after a major or minor trauma. That could be an ankle or wrist fracture, heart ailment, infection, surgery or spinal injury. Without warning, the first attack often paralyzes its victim with pain described as burning, throbbing, aching, stabbing, tingling or crushing.
Essentially, nerves go amok."It's normal for your sympathetic nerves to react to pain," said Dr. Kevin L. Hastings of Osteopathic Pain Management Services in Vestal. "What's not normal is for (the nervous system) to take on a life of its own that continues long after the injury."
As the disorder progresses, the potentially debilitating pain can spread throughout the body, regardless of the trauma's original location. The slightest touch, even a mild breeze from an open window or air conditioner, and loud noise can trigger excruciating pain.
About one million people in the United States suffer from the disease, according to the RSDS association. So far, the disorder can be only managed, not cured, the association said. For unknown reasons, the syndrome affects twice as many women as men, according to the Center for Rehabilitation of Pain Syndromes at UCLA.
Hastings said a diagnosis can be difficult because physicians don't have a single, simple test to confirm the disorder, although a bone scan can give some indication of whether CRPS/RSDS is causing a patient's extreme pain.
Taking a tollThe flu and a nightmarish scream unexpectedly introduced a Unadilla family to CRPS/RSDS in February 2002.
Laurie Rowe's daughter, Brittany, went to bed about 9 p.m., a few nights after recovering from a bout with the flu. About 90 minutes later, Laurie heard frantic screams from her daughter's bedroom.
There, Laurie saw Brittany rolling in pain. Her right knee was red-hot and swollen about five times its normal size, Laurie recalled. On a scale of 1 to 10, Brittany pegged the pain as "off the charts." Within hours, the pain and swelling had subsided, but the family's search for a cause had only begun.
For months, the Rowes scrambled from doctor to doctor, including specialists at well-known East Coast medical centers and teaching hospitals, for a definitive diagnosis. Some mentioned CRPS/RSDS, but no one confirmed the diagnosis, Laurie said.
Brittany's attacks continued, spreading from her right to left knee and elsewhere. The pain became a daily grind, although Brittany, now 15, endured and went to school daily with the occasional aid of crutches or a wheelchair.
Finally, the family got an "official" culprit when an Oneonta-based physician used the words Reflex Sympathetic Dystrophy Syndrome to describe Brittany's condition at a November 2003 examination.
"I was stunned to silence," Laurie said. "I couldn't say anything. We had waited (almost) two years for a diagnosis."
Brittany takes an antiseizure medication and over-the-counter painkillers. Despite the pain, the freshman gets honor-roll grades at Unatego High School, sings in the chorus and played a minor role in a play.
Cheryl English's introduction to RSDS began in 1991 after she hurt her left hand while working in a company cafeteria.
After the injury, her left shoulder unexpectedly locked. From there, English trudged from doctor to doctor, seeking a medical explanation.
Along the way, she endured countless tests and treatments, including nerve blocks and a spinal cord stimulator. Nothing relieved the pain.
At one time, English took 27 pills a day, which led to various allergic reactions. Today, she manages the disorder with an anti-anxiety medication and holds to a low-stress lifestyle.
By most standards, though, life with CRPS/RSDS is anything but normal for English and her husband, Bill.
"The simple is magnified a thousand times," said Bill English, 47, a New York State Gas & Electric Corp. employee. "We don't have a life like everyone else. We know that this thing could attack at any moment."
Cheryl and Bill, who've been married for five years, don't plan vacations. In a perfect world, they'd like to attend B-Mets' or B-Senators' games, but do so knowing they might need to leave if Cheryl gets an attack. That's happened several times.
Bill handles most of the household chores, grocery shopping and yardwork.
"It runs everything; you can't plan anything," said Bill, whose health insurance has covered Cheryl's medical care. "You want to do something about it, but all I can do is just stand back."
Ditto for Laurie Rowe and her family.
"It's very hard," she said. "It's taken its toll on everybody. Vacations and day trips require special planning."
Search for understandingNeither family wants pity, but they do want understanding.
They hope Abdul's revelation will make others aware of the disease. CRPS/RSDS is obscure only by ignorance, they said. The disorder was first noted in medical annals during the Civil War, the RSDS association said.
"A lot of people don't understand, including family, so you feel alone," said Laurie Rowe. "People want to hear she's OK, but she's not."
Cheryl English hopes the attention will bring funding for research to find a cure and effective treatments.
"It's a lonely life. My friends don't understand," she said. "I want people to know it's a real disease."
Gannett News Service contributed to this report.http://www.pressconnects.com/today/news/stories/ne051305s166209.shtml
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