RSD - Nothing Left To Chance

Whether you call it Reflex Sympathetic Dystrophy Syndrome or Chronic Regional Pain Syndrome - it's still a hideous soul-sucking disease.

16.1.08

Beating Back the Stigma of Pain Treatment

Paula Abdul's Stardom May Help Cut Negative Perceptions About Chronic Pain, Painkiller Use

By LAUREN COXABC News Medical Unit
Jan. 16, 2008 —

If celebrity gossip were the stock market, Paula Abdul's shares would be on a solid uptick.
Her hit program "American Idol" started Tuesday with no writers needed and TVguide.com reports that she's in talks to sing at the Super Bowl halftime show. Abdul, who has endured more than her share of bad Hollywood gossip, also has a condition not shared by many fellow celebrities. She's one of millions of Americans who suffer from chronic pain.

Acknowledging Her Pain
In a 2005 interview, Abdul was straight up with People magazine, confirming that she had taken powerful drugs before Oxycontin, Vicodin, Soma but all in an excruciating trial-and-error process to beat her chronic pain.

Abdul claimed to suffer from a condition called Regional Sympathetic Dystrophy, or Complex Regional Pain Syndrome. The condition, she said, started with a cheerleading neck injury that sent her body into a mysterious chain reaction of pain symptoms that spiraled into intolerable pain over decades.

Chronic pain may be mysterious, but it's not uncommon. About 10 percent of people suffer from pain that lasts longer than a year, according to 2002 statistics from the American Pain Foundation. For people with neuropathy, spinal cord injuries, rheumatoid arthritis and other diseases, chronic pain can last for decades and sometimes require drugs with side effects that can leave people drowsy, nauseous, or suffering from memory lapses to make life tolerable.
Getting Acceptance

"We don't want sympathy at all, we just want empathy; we want understanding," says Mike K. Buckley, 51, a retired firefighter in Massachusetts who suffers from chronic pain. In the summer of 2002, Buckley pulled a fire hose toward a blaze in full gear. With just one unnatural turn, two discs in the middle of his back bulged into his spinal cord. This single injury has sent him to the emergency room 20 times in the past four years, every time in a bout of excruciating pain.

Buckley stayed at work for three years, even after a T-bone car accident injured a third disc in his spine, making his chronic pain condition inoperable.

"Oh you're taking Oxycontin? Are you addicted?" Buckley remembers his fellow firefighters asking. "I used to joke with people: I wished I was just getting high off of this!"
In fact, most chronic pain patients won't get high with a well-managed dose of opioids like Oxycontin, says Dr. Elliot Krane, professor of anesthesia and pediatrics at Stanford University in Palo Alto, Calif.

"All of us have had patients on grams and grams rather than milligrams of morphine or hydropmorphone, for example, who have been very functional," said Krane, "whereas the same dose would render the opioid-naïve patient comatose."

Prescription Woes
Prescriptions for opioids took off in the 1980s and 1990s with the realization that short-term painkillers could help chronic pain patients in the long term, says Dr. Joe Shurman, chairman of pain management at Scripps Memorial Hospital in La Jolla, Calif.

Unfortunately, in the late 1990s, the drug Oxycontin left a wake of reports of prescription painkiller overdoses and abuses skyrocketed.

"It gives everybody with pain a bad rap," said Buckley, whose doctors have tried Vicodin, Oxycontin and epidural injections to fix his pain before finally finding a prescription for methadone, which he says works. Each time a chronic pain patient switches drugs, he or she may take a couple of weeks to adjust to the mental and physical side effects.

"A lot of us just take it to get through the day, and a lot of times the pain wins," said Buckley.
Buckley had to retire in January of last year after a fall down some stairs, which Buckley says weren't compliant with the fire code. Though he says he still spends most of his days at a seven on the 1-10 pain scale used by doctors, Buckley may have been lucky that doctors even believed he was in pain.

Convincing Peers and Doctors
"I guess I wasn't screaming enough; I told them I was in pain, but I guess I should have been yelling at them," said Janice Dallas, a Type 1 diabetic who suffers from "fire and lightning" pain due to a degenerative nerve disease called neuropathy.

"It started out in '94 with neuropathy, it wasn't diagnosed until 2000," said Dallas. Part of Dallas' six-year wait for a diagnosis was an odd condition: She felt pain in her trunk, as opposed to the more common areas of hands and feet.

But part of Dallas' challenge to get diagnosed might have also been doctors' heightened scrutiny of anything that might resemble drug-seeking behavior.

In response to the rising Oxycontin abuse, the U.S. Drug Enforcement Administration started the official Action Plan to Prevent the Diversion and Abuse of Oxycontin in 2003.
The plan led to high-profile cases of doctors going to jail for prescribing certain opioids. Now doctors are hesitant to prescribe heavy-duty pain killers like Oxycontin. "It's shifting to being underprescribed," said Shurman.

But perhaps high profile cases of chronic pain like Abdul's could eventually help normalize the stigma and fear that come along with the proper use of prescribed painkillers.

"Unless you've really experienced pain you can't get rid of, you don't understand our world," Buckley said.

Unlike Buckley, Abdul had a chance of ending her world of pain. In her interview with People, Abdul says after more than 25 years of unsuccessful treatments she's feeling better than ever. According to the Associated Press, Abdul and her doctor report she's only taking low-side effect medication of Enbrel for arthritis and Pamidronate for complications of her chronic pain.
Buckley still feels supportive of Abdul's trial in the spotlight.

"When it comes down to it celebrities are people just like us and have to deal with this pain that changes their whole world."

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