Living With Pain That Just Won’t Go Away

By JANE E. BRODY
Pain, especially pain that doesn’t quit, changes a person. And rarely for the better. The initial reaction to serious pain is usually fear (what is wrong with me, and is it curable?), but pain that fails to respond to treatment leads to anxiety, depression, anger and irritability.
At age 29, Walter, a computer programmer in Silicon Valley, developed a repetitive stress injury that caused severe pain in his hands when he touched the keyboard. The injury did not respond to rest. The pain became worse, spreading to his shoulders, neck and back.
Unable to work, lift, carry or squeeze anything without enduring days of crippling pain, Walter could no longer drive, open a jar or even sign his name.
“At age 29, I was on Social Security disability, basically confined to home, and my life seemed to be over,” Walter recalls in “Living With Chronic Pain,” by Dr. Jennifer Schneider. Severely depressed, he wonders whether his life is worth living.
Yet, despite his limited mobility and the pain-induced frown lines in his face, to look at Walter is to see a strapping, healthy young man. It is hard to tell that he, or any other person beset with chronic pain, is suffering as much as he says he is.
Pain is an invisible, subjective symptom. The body of a chronic pain sufferer — someone with fibromyalgia, for example, or back pain — usually appears intact. There are no objective tests to detect pain or measure its intensity. You just have to take a person’s word for it.
Nearly 10 percent of people in the United States suffer from moderate to severe chronic pain, and the prevalence increases with age. Complete relief from chronic pain is rare even with the best treatment, which is itself a rarity. Doctors and patients alike, who misunderstand the effects of narcotics, are too often reluctant to use drugs like opioids, which can relieve acute, as well as chronic, pain and may head off the development of a chronic pain syndrome.
Why Pain Persists
The problems with chronic pain are that it never really ends and does not always respond to treatment. If the pain initially was caused by an injury or illness, it can persist long after the injury has healed or the illness defeated because permanent changes have occurred in the body.
Mark Grant, a psychologist in Australia who specializes in managing chronic pain, says the notion that “physical injury equals pain” is overly simplistic. “We now know that pain is caused and maintained by a combination of physical, psychological and neurological factors,” Mr. Grant writes on his Web site, www.overcomingpain.com. With chronic pain, a persistent physical cause often cannot be determined.
“Chronic pain can be caused by muscle tension, changes in circulation, postural imbalances, psychological distress and neurological changes,” Mr. Grant says on his site. “It is also known that unrelieved pain is associated with increased metabolic rate, spontaneous excitation of the central nervous system, changes in blood circulation to the brain and changes in the limbic-hypothalamic system,” the region of the brain that regulates emotions.
Dr. Schneider, the author of “Living With Chronic Pain” (Healthy Living Books, Hatherleigh Press, 2004), is a specialist in pain management in Tucson, Ariz. In her book, she points out that the nervous system is responsible for the two major types of chronic pain.
One, called nociceptive pain, “arises from injury to muscles, tendons and ligaments or in the internal organs,” she writes. Undamaged nerve cells responding to an injury outside themselves transmit pain signals to the spinal cord and then to the brain. The resulting pain is usually described as deep and throbbing. Examples include chronic low back pain, osteoarthritis, rheumatoid arthritis, fibromyalgia, headaches, interstitial cystitis and chronic pelvic pain.
The second type, neuropathic pain, “results from abnormal nerve function or direct damage to a nerve.” Among the causes are shingles, diabetic neuropathy, reflex sympathetic dystrophy, phantom limb pain, radiculopathy, spinal stenosis, multiple sclerosis, Parkinson’s disease, stroke and spinal cord injury.
The damaged nerve fibers “can fire spontaneously, both at the site of the injury and at other places along the nerve pathway” and “can continue indefinitely even after the source of the injury has stopped sending pain messages,” Dr. Schneider writes.
“Neuropathic pain can be constant or intermittent, burning, aching, shooting or stabbing, and it sometimes radiates down the arms or legs,” she adds. This kind of pain tends “to involve exaggerated responses to painful stimuli, spread of pain to areas that were not initially painful, and sensations of pain in response to normally nonpainful stimuli such as light touch.” It is often worse at night and may involve abnormal sensations like tingling, pins and needles, and intense itching.
Some chronic pain syndromes involve both nociceptive and neuropathic pain. A common example is sciatica; a pinched nerve causes back pain that radiates down the leg. In some cases, the pain of sciatica is not felt in the back but only in the leg, making the cause difficult to diagnose without an M.R.I.
Beyond Physical Problems
The consequences of chronic pain typically extend well beyond the discomfort from the sensation of pain itself. Dr. Schneider lists these potential physical effects: poor wound healing, weakness and muscle breakdown, decreased movement that can lead to blood clots, shallow breathing and suppressed coughing that raise the risk of pneumonia, sodium and water retention in the kidneys, raised heart rate and blood pressure, weakened immune system, a slowing of gastrointestinal motility, difficulty sleeping, loss of appetite and weight, and fatigue.
But that is hardly the end of it. The psychological and social consequences of chronic pain can be enormous. Unremitting pain can rob a person of the ability to enjoy life, maintain important relationships, fulfill spousal and parental responsibilities, perform well at a job or work at all.
The economic burdens can be severe, especially when the patient is the primary breadwinner or holds a job that provides the family’s health insurance. Only about half of patients with chronic pain “who undergo comprehensive multidisciplinary pain rehabilitation are able to return to work,” Dr. Schneider reports.
As for the notion that chronic pain patients are often malingering — seeking attention and escape from responsibilities — pain specialists say that is nonsense. No one in his right mind — and most patients were in their right minds before the pain began — would trade a fulfilling life for the misery of chronic pain.