As a registered nurse, Susan Norton of Charlottesville, Virginia, was well aware that pain is something hard to quantify, an experience that no two people describe in exactly the same way.

In this article: The Causes of Pain Treating the Pain New Standards for Pain Management The Difficulty in Quantifying Pain Fighting Back Resources

But when she felt a stabbing sensation in her abdomen one holiday weekend in 1982, Norton knew that she had reached her own personal threshold of pain tolerance. It was time to go to the emergency room.

The doctor diagnosed intestinal flu and sent the mother of two home clutching medicines that did little to quell her anguish. Norton didn't know it at the time, but her pain was caused by an ovarian cyst that had ruptured suddenly, causing internal bleeding. Today, she realizes that doctors should have operated immediately and followed up with bed rest and antibiotics. Instead, Norton ended up with peritonitis, which caused massive scarring in her pelvis, gastrointestinal tract and nerves.

Unable to get out of bed for hours at a time, Norton was forced to give up her job as a registered nurse. She couldn't care for her children or drive them to school. As her pain grew steadily worse over the years, doctors told her there was nothing they could do and she would have to live with it. If not for her parents, who moved in and took over daily tasks from cooking to laundry, Norton said she would have given up.

"My nerves were damaged, they were encased in scar tissue and didn't signal properly," she recalls. "I'm a nurse, I'm someone who accepted a certain amount of pain, but by 1993, it had become absolutely unbearable."

And so began a long and exhausting journey that would take Norton to a dozen doctors and clinics, plunge her into traditional medicinal treatments as well as alternative therapies and result in her trying prescribed opiates, anti-inflammatory drugs and anti-depressants in a desperate search for relief. At that point, Norton wasn't seeking a cure anymore, but simply a diminished level of pain that would allow her to function again.

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The breakthrough came when Norton began seeing a specialist at the Blaustein Pain Treatment Center at Johns Hopkins Hospital in Baltimore. Today, while she realizes she will never be pain-free, Norton is able to "manage" her pain using a complex regimen of drugs and therapies and a downscaled lifestyle that includes prayer, stress reduction and several naps each day.

The Causes of Pain

Norton is one of an estimated 50 million Americans who suffer from chronic pain. An additional 25 million people experience acute pain as a result of injury or surgery. Only one in four receives proper treatment, says the American Pain Foundation, an independent non-profit organization in Baltimore.

Even the definition and causes of pain remain elusive. Doctors distinguish between neurogenic pain, which originates in the nerves, and musculosketal pain, such as that caused by a strained knee. Then there are ill-defined entities such as fibromyalgia, whose cause is not yet fully understood. Experts also know that there is a strong psychological component to pain, which explains why people of some cultures are able to tolerate pain better than others.

Acute pain is triggered by a specific incident, such as tissue damage, and usually dwindles as the body heals. Chronic pain is more problematic and debilitating. Its cause is often hard to pinpoint, such as pain that persists long after an injury heals because of changes in the nervous system that are not yet fully understood. Chronic pain that persists for years can lead to higher levels of stress, difficulties in sleeping and depression. It is also far more common than one might imagine.

Statistics from the American Pain Foundation tell the story: Arthritis, the most widespread source of chronic pain, affects one in six Americans. Back pain, the leading cause of disability in Americans under 45, affects 26 million. According to the American Alliance of Cancer Pain Initiatives in Madison, Wisconsin, an estimated 70 percent of cancer patients experience significant pain during the course of their disease but less than half receive adequate treatment.

Migraines, nerve damage and fibromyalgia -- a still little-understood disease of the connective tissues -- are also common causes of chronic pain. Scientists are learning more every day about how the brain registers and processes pain, which is programmed into our genetic make-up by biological necessity and serves a valuable function in alerting us to danger. Imagine the injury that would occur if a small child put his hand on a hot stove and the nerve endings didn't transmit a pain message to his brain.

Scientists know now that pain is a sensory system just like vision or touch, with sets of receptors and signaling pathways that are part of the nervous system. When a person is injured, the damaged tissue dumps chemicals called prostaglandins onto pain-sensing nerves that run through our bodies. That in turn sends messages to the spinal cord and up to the brain, where the message gets translated and your brain tells you that the sensation you're experiencing is pain.

But here is where it gets tricky, because there is no quantifiable way to measure that pain. Each person's experiences are unique, determined by his or her genetic wiring, emotional state, previous exposure to pain and cultural expectations. This helps explain why a pinprick that caues one person pain in laboratory tests but will leave another person unmoved.

Likewise, in emergency situations, people may not register pain in the same way because their brains are distracted. Think of the person fighting off an attacker who realizes he has been shot only when he sees blood. Or the mother lifting the end of a car that rolled onto her child during an accident. In these cases, the brain concentrates on survival tasks and dims the pain signal by secreting chemicals, including endorphins, the body's natural painkillers.

Treating the Pain

Regardless of how humans experience pain, society is slowly moving away from the idea that it is stoic or somehow noble to suffer pain in silence. In the last 10 years, the prescription of narcotics -- the most effective class of drugs for severe pain -- has increased tenfold.

Most medical experts say that when prescribed by an experienced pain-management doctor and taken as directed, opiates are very safe, even for long-term use, and that there is very little chance of becoming addicted or even experiencing the addict's "high." That is because under medical treatment for severe pain, the opiates are delivered over a longer period of time instead of in a sudden pleasurable rush to the brain.

Another class of drugs for pain is non-steroidal, anti-inflammatory drugs (NSAIDS), painkillers that include aspirin and ibuprofen.

Other treatments include basic exercise and stretching and alternative approaches such as massage therapy, biofeedback, yoga, meditation and acupuncture, all increasingly embraced by doctors who specialize in treating pain.

Many pain sufferers also swear by prayer, which they say helps focus their spiritual energies, and volunteer work, which takes their minds off their own pain and makes them feel they are doing something worthwhile for others. Most doctors today recommend a multi-faceted plan for treating pain that can include many of the above, although each pain management plan must be tailored to the individual.

What is known is that people whose pain is treated aggressively in the initial stages heal faster. Doctors say pain debilitates the immune system. Scientists have found, for instance, that cancerous tumors in rats grow more slowly when the animals are treated aggressively for pain.

"Pain has effects on the immune system that are very detrimental but that aren't understood yet completely," says Dr. James Campbell, director of the Blaustein Pain Treatment Center at Johns Hopkins Medical Center in Baltimore. "One hypothesis is that as a result of pain there's increased stress, and these [stress] hormones released by the brain compromise the body's ability to have an immune response and so the cancer grows faster. When pain is treated pre-emptively in the hospital, patients get better faster, they heal faster, there is less chance of infections, pneumonia and deep vein thrombosis."

New Standards for Pain Management

Advocates say an important milestone in the treatment of pain is the adoption of new standards by the Joint Commission on Accreditation of Health Care Organizations (JCAHO), the non-profit organization that accredits about 80 percent of the nation's hospitals plus many other health-care organizations.

The 5,000 hospitals and 12,000 nursing homes, clinics, health maintenance organizations and other health care facilities covered by JCAHO must now regularly assess, monitor and manage pain in their patients, according to new rules that went into effect in January 2001.

Under the JCAHO standards, healthcare providers must ask patients about the severity and duration of their pain and ask them to rate it on an easy to understand scale. They are required to develop a pain management plan prior to surgery -- for instance, monitor and assess a patient's pain during a hospital stay and adjust medications as necessary until the patient feels comfortable. They must develop similar plans for chronic pain patients who have cancer, diabetes, arthritis and other diseases.

Health-Care providers are also required to educate staff, patients and relatives about pain management. JCAHO surveyors have already started to assess compliance and hospitals that fall short will be given a deadline to get up to speed or risk losing their accreditation.

The Difficulty in Quantifying Pain

In asking patients to gauge their pain, many healthcare providers use a 10-point pain chart with 0 being no pain and 10 being the highest level of pain. The numbers are often accompanied by little round faces that range from smiley to neutral to slightly frowning to screaming and grimacing. Patients are asked to rate their pain. Those unable to talk can still point to the ranking that best describes their level of pain.

If ranking pain according to numbers and smiley faces sounds like an inexact measure, it is. But even here, medical experts are making progress. Two scientists from the University of New York at Albany last year received a patent for a device that enables them to measure the brain waves of pain sufferers and create averages that will allow them to chart pain levels.

Neuroscientist A. Vania Apkarian and radiological physicist Nikolaus Szeverenyi say identifiable changes in brain patterns occur when a patient experiences pain and that different types of pain create different brain patterns. But they concede that interpreting the data they collect remains the biggest hurdle. It isn't enough to chart the waves, they explain; they hope to be able to say what that means from person to person.

Fighting Back

Penney Cowan of Rocklin, California, knows exactly what difficulties they face. She's been suffering headaches, muscle pain and back and neck aches since 1974, when her second child was born. For six years she dragged her aching self from specialist to specialist, clinic to clinic, only to have them diagnose everything that her pain was not.

"It's not logical that medicine can give someone a new heart or lung but it can't help someone suffering from muscles pains and headaches. People with pain are looking for a cure, we believe we deserve it. That's what medicine has shown us, and that's what's so depressing," she says.

Over time, the 5-foot-10-inch homemaker went from 145 pounds to 115 pounds, became bedridden, suffered severe depression and was so racked by pain that she couldn't even hold a cup of coffee, much less her crying toddlers. Doctors prescribed a variety of medicines. But opiates made her nauseous and dizzy so she had to stop taking them.

"The pain totally controls you, absolutely every moment of your life. I went from someone who was an over-achiever, with the best house, the best kids, to someone who had to watch someone do everything for me," Cowan says.

"I remember sitting there trying to fold a basket of clothes. It took me two hours. I remember my 5-year-old boy touched my arm and then looked at me and apologized. That's how bad it was; he couldn't touch me. It broke my heart. The pain took away my identity. I felt guilty destroying everyone else's life along with mine."

Networking with other pain sufferers finally brought Cowan to the Cleveland Clinic Pain Management Center in Ohio run by Dr. Edward Covington. He told her she had fibromyalgia and there was no magic pill that would take the pain away -- she would have to learn how to live with it.

Cowan spent seven weeks at the clinic, undergoing physical therapy, doing stretching exercises, learning biofeedback to relax, participating in intensive group and individual therapy, assertiveness training and helping to draw up a pain management plan that would improve her quality of life.

Today she practices relaxation techniques all day long. Doctors say relaxation is key because people in pain tend to tense their muscles, which contributes to the pain cycle, and also suffer sleep disturbances because they find it hard to fall into deep sleep.

Like Susan Norton, who founded a support group in her area for people who suffer from chronic pain, Cowan also found relief by focusing on something outside her pain. She founded the American Chronic Pain Association, a self-help organization that provides peer support and teaches coping skills to those in chronic pain. The ACPA now has support groups across the country.

Cowan says many healthy people fail to realize that chronic-pain sufferers have good days and bad days. They may not be able to hold full-time jobs. Sometimes Cowan is physically able to do more work, other days less. There are times when it doesn't hurt to lift a cup of coffee, fold clothes and receive a hug from her now grown son. And throughout, she, like Norton, says the support of her husband, children, friends and family has been invaluable.

"In our society," Norton says, "people assume that when you have something that doesn't go away and get better, it's your fault. So it's helped me tremendously to know that I have a supportive family and friends who knew me when I wasn't sick and know that I'm not a nut, a hypochondriac."

In addition to family support, both Norton and Cowan say they have benefited from their willingness to confront, manage and ultimately control how much the pain will affect their lives.

"You may have the best medical care in the world, but there may still be a level of pain you have to live with; you have to become part of the treatment plan" is what Cowan tells everyone who will listen. "There is no one in the world who understands how our pain feels."

Resources

Denise Hamilton is a Southern California-based writer whose work appears in publications including Apria.com, the Los Angeles Times' Health section and New Times Los Angeles. Her first book, "The Jasmine Trade," is published by Scribner.