Pain affects 1 in 4 Americans

Ryckman: The world of hurt
From www.rockymountainnews.com

'Invisible disease' of pain afflicts one in four Americans

Pain has become a national epidemic and one of the nation's most dismissed and undertreated conditions. More than 75 million Americans suffer from chronic, debilitating pain, and more than 50 million of them are partially or totally disabled by it, according to the Englewood-based National Pain Foundation. Pain cost Dennis Kinch his job, his home and his family.
"You end up feeling alone on an island wondering who you are now," the Boston man says. "Pain runs your life."

But it wasn't going to ruin it, Kinch decided. The 51-year-old cook suffers from two diseases that make walking painful, if not impossible - so that's exactly what he did. He walked 2,400 miles, from Chicago to Santa Monica, Calif., along Route 66, starting last fall and ending Friday. Along the way, he stopped at 35 pain clinics to talk to patients and doctors as a spokesman for the National Pain Foundation.

"Do what you can when you can," Kinch says. "Sometimes it seems like everything is negative. You have to learn to tune that negative stuff out. That's what keeps people in pain on the couch - they get scared. They're afraid of the pain."

Pain has become a national epidemic and one of the nation's most dismissed and undertreated conditions. More than 75 million Americans - one in four - suffer from chronic, debilitating pain, and more than 50 million of them are partially or totally disabled by it, according to the Englewood-based NPF.

Government statistics show that pain is a factor in more than 80 percent of all physician visits, yet fewer than 1 percent of doctors have training in pain treatment, says NPF Executive Director Mary Pat Aardrup.

"Pain is viewed as a character flaw. It's an invisible disease," she says. "You don't have a bandage, you haven't lost any hair. When someone is in pain 24-7 - and a lot of people are - family and friends tire of hearing about it, and they often go away. Your self-worth and dignity go away. Your identity as a person vanishes. You become the pain."

The portrait of pain in America looks like everyone: It cuts across all genders, races and ages, including an estimated 20 percent of children. But surveys find that people are afraid to talk about it, reluctant to treat it and dismissive of it in themselves and others.

Nicole Hemmenway, of Corpus Christi, Texas, was 12 when she was diagnosed with complex regional pain syndrome, a neurological disorder. It began in her right hand, which swelled, purpled and stayed clenched for more than five years.

"It felt like my hand was being submerged in hot oil," says Hemmenway, now 25. "It slowly went up my arm until I wasn't able to use it at all, then down my left side and throughout my body. I was in a wheelchair, I was bedridden, I couldn't walk, I couldn't get dressed by myself, I didn't take a shower for 10 months."

Hemmenway went through every drug, every procedure, every device. But she never let a doctor tell her she wasn't going to get better. At 19, she realized that her pain didn't have to control her life.

"Most of the time, people are belittled and told it's in their head. You feel like an outcast," says Hemmenway, whose pain is under control. She's now running a couple of miles a day. "I want people to hold on to hope. It will get better, and they're not alone. People do believe their pain."

A third of sufferers in the Partners Against Pain 2000 survey didn't believe that people understood how much pain they were in; one quarter said their families were tired of hearing about it. Nearly 40 percent said they felt isolated and alone.

More than 40 percent said they would spend all their money on a treatment they thought might work.

"There are days when I feel like a broken bottle," a woman wrote to the American Pain Foundation. "All the pieces hurt, and I can't seem to bring them together to make an entire vessel."

Compounding the treatment problem is the belief that pain medications lead to addictions, a misconception that contributes to undertreatment, Aardrup says.

"The vast majority of people in pain are not addicts and abusing or diverting drugs," she says. "(That belief) is putting the squeeze on access to care for chronic pain. There's a fear on the part of doctors that overprescribing may put them in jeopardy, losing their license or even going to prison. People in pain are absolutely dependent on having as many resources as possible."

Pain annually costs the nation more than 50 million lost workdays, more than $3 billion in lost wages and more than $100 billion in lost productivity. About 75 percent of that lost production came from reduced work performance, not absenteeism, according to a 2003 study in The Journal of the American Medical Association.

"We only spend 1 percent of our research budget on pain even though it is our most costly problem," Dr. Rollin M. Gallagher, director of the Center of Pain Medicine, Research and Policy at the University of Pennsylvania School of Medicine, told a congressional hearing on pain last month. Congress is considering the National Pain Care Policy Act, which would improve pain education for physicians, improve access to pain-management services and increase funding for pain research.

The voices of people in pain reflect frustration and despair. In the Partners Against Pain survey, nearly 30 percent said they felt there was no solution for their pain. A third of sufferers had chronic pain so severe and debilitating that they felt they couldn't function as normal people and sometimes felt so bad that they wanted to die.

Writing to the American Pain Foundation, one woman said she lost her job and her marriage and attempted suicide after a car accident left her with chronic, debilitating pain. But she keeps going, with help from doctors, drugs and determination.

"I struggle every day, a delicate balance, like walking on a cliff path. One strong gust of wind and I know that I will fall over," she wrote. "But I turn my face to the wall, take a deep breath and dig my fingers into the rock and walk on.

"As far as I can go."

The hard facts

Here are some facts about pain from the 2000 Gallup survey Pain in America and the 2000 Partners Against Pain report, A Survey of Pain in America:

• Nine in 10 Americans suffer from regular pain; 89 percent reported they have some sort of pain monthly or more often.

• Nearly 26 million Americans suffer from severe pain. Forty-six percent reported moderate pain.

• Nearly 42 percent said they experience pain daily.

• On average, people with moderate to severe pain have lived with it for close to 1 1/2 years.

• Eighty-three million Americans reported that pain frequently affects their participation in some activities. Forty-three percent of respondents reported that pain occasionally affects participation.

• Four in five Americans believe aches and pains are a part of getting older, and 64 percent would see a doctor only when they couldn't stand the pain any longer.

• Sixty percent said pain is something you just have to live with, and 55 percent said they're uncomfortable taking medications.

• More than half said that they prefer being alone when they're in pain and that they're in a bad mood when in pain.

• Eighty percent of patients surveyed think their pain is a normal part of their medical condition and something they have to live with.

• About 40 percent said they're uncomfortable discussing their pain.

• More than half said pain interferes with their sleeping or mood, 30 percent their ability to drive, and 28 percent their ability to have sexual relations.

• Patients are so dissatisfied with the efficacy of their prescription and over-the-counter pain-control medications that 78 percent are willing to try new treatments.

• Two-thirds said their over-the-counter medications aren't effective, and 52 percent of those taking prescription medications said they're not effective.

Pain practitioners

If you're looking for a pain specialist, ask for a referral from your primary- care physician. Here are some questions for a potential pain practitioner from the National Pain Foundation:

• How many cases of my type of pain condition have you treated?

• What are your special qualifications to treat my pain condition?

• Have you participated in any special training about pain-management techniques?

• What is your philosophy of management of my pain condition in terms of medications and alternative therapies?

• What types of medications do you usually prescribe?

• What types of non-medication therapies do you use?

• Where do you refer patients who need additional treatment?

• Is your clinic listed with any professional societies?

• Are you, or is someone in the clinic, available 24 hours a day if I need help?

Ryckmanl@RockyMountainNews.com