LIVING WITH PAIN THAT JUST WON’T GO AWAY
By JANE E. BRODY
Published: November 6, 2007
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.
Chronic Pain: A Burden Often Shared
By JANE E. BRODY
Published: November 13, 2007
Chronic pain is a family problem. When people experience unrelenting pain, everyone they live with and love is likely to suffer. The frustration, anxiety, stress and depression that often go with chronic pain can also afflict family members and friends who feel helpless to provide relief.
Stuart Bradford
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Healthy family members are often overworked from assuming the duties of the person in pain. They have little time and energy for friends and other diversions, and they may fret over how to make ends meet when expenses rise and family incomes shrink.
It is easy to see how tempers can flare at the slightest provocation. The combination of unrelieved suffering on the one hand and constant stress and fatigue on the other can be highly volatile, even among the most loving couples — whose burdens are often worsened by a decline of intimacy.
“Family members are rarely considered by doctors who treat pain,” said Dennis C. Turk, a pain management researcher at the University of Washington in Seattle. “Yet a study we did found that family members were up to four times more depressed than the patients.”
But pain experts say there is much that family members and friends can do to improve the situation.
Step one is to recognize that chronic pain is not an individual problem. Let the patient know that you are in this together and will fight it together. When the patient is moody and irritable, try not to take it personally.
Step two involves learning as much as you can about the condition and how to treat it. Eliminating the pain may not be possible, but there often ways to reduce it. (See next week’s column on treating chronic pain.)
Some of the ideas below were adapted from the American Chronic Pain Association’s Family Manual, written by Penney Cowan, the association’s founder and executive director.
“Twenty-five percent of the calls we get are from family members looking for help,” Ms. Cowan said in an interview last week. “Family members are just as isolated, controlled, frustrated, guilt-ridden and confused by chronic pain as is the person in pain.”
Acknowledge your feelings. You may feel guilty about not being able to relieve the distress of someone you love. You may be anxious about financial problems.
You may be distressed by the reactions of other people, who might lack an understanding of chronic pain and suggest that the patient is malingering — faking the pain to avoid work or family responsibilities. At a time when you most need the understanding and support of others, they may seem unsympathetic, even hostile.
But the most common reaction is resentment, over a withdrawal of the patient’s affection and sexual intimacy, the unending care required by the patient, the need to add the patient’s responsibilities to your own, the decline or loss of a social life and time spent with friends. You may resent having to abandon an enjoyable lifestyle or plans for the future.
If the patient was the family breadwinner and is now unable to work, you may have to find a job and, at the same time, do most or all of the chores at home and care for the patient. Chronic exhaustion can erode your temper as well as your own health.
It is all too easy to react to such feelings in emotionally destructive ways. Owning up to them can help you cope more successfully.
Help the patient stay involved. Chronic pain can rob people of their abilities and force them to be cared for by others, leaving them to feel worthless and guilty over not contributing to the family’s welfare. Whether you are the patient’s primary or intermittent caregiver, it is important not to contribute to feelings of helplessness.
Encourage patients to participate as fully as possible in family plans and activities, household chores, discussions and decisions. Perhaps they can no longer do yardwork, but they may still be able to help with cooking, setting the table, washing the dishes, caring for children, handling family finances, making phone calls or shopping by phone. Feeling useful can bolster a patient’s self-esteem and mood.
“For each action the pain person says he or she can no longer do, point out something he or she can do,” the pain association’s manual suggests.
Don’t become a go-for. Chronic pain patients should be encouraged to do whatever they can do for themselves. It is important for you to know when to step in and when to step back. Recognize the patient’s abilities and limitations — consider having an evaluation made by an occupational therapist — and let the patient participate as much as possible in daily activities and self-care.
Communicate. “Open, two-way communication is crucial to dealing effectively with chronic pain,” said Dr. Turk, of the University of Washington. “Family members need to know how they can be helpful and what might be hurtful.”
Failure to communicate honestly and openly can become a cancer on a relationship, be it with a spouse, parent or child. If chronic pain has disrupted family plans, discuss a reordering of priorities. It may be possible to do more than you think.
You have a right to say that you are tired and need to rest, that you need a break from the routine lest you burn out, and that you need to maintain friendships and pursue enjoyable activities outside the home from time to time.
Likewise, the patient has a right and responsibility to express fear, disappointment, guilt and bad feelings about the behavior of some people, as well as gratitude for the help you and others provide.
Ask periodically what the patient might like to discuss with you or do with you. And try not to rise to the bait when the patient is critical or lashes out at you despite all you do. Most often, you are not really the target. But there may be no one else with whom the patient feels safe to express distress.
Take care of yourself. Enlist all the help you can get from family members and friends. Older children can clean the house and prepare meals. Friends and relatives who offer to help can be given tasks that fit their abilities, even if it is just accompanying the patient to a medical appointment. If they haven’t offered, ask.
When necessary, hire others, including neighborhood teenagers, to help out. If you are reluctant to leave the patient home alone, ask a friend or neighbor to stay for a few hours or to look in on the patient every so often so that you can get out for a while.
Don’t neglect your own physical well-being. Eat regular meals, get enough sleep and get regular physical exercise. And be sure to keep up with medical checkups and screening exams. If you get sick, you won’t be much use to the patient in pain.
MANY TREATMENTS CAN EASE CHRONIC PAIN
By JANE E. BRODY
Published: November 20, 2007
There is one undeniable fact about chronic pain: More often than not, it is untreated or undertreated. In a survey last year by the American Pain Society, only 55 percent of all patients with noncancer-related pain and fewer than 40 percent with severe pain said their pain was under control.
But it does not have to be this way. There are myriad treatments — drugs, devices and alternative techniques — that can greatly ease persistent pain, if not eliminate it.
Chronic pain is second only to respiratory infections as a reason patients seek medical care. Yet because physicians often do not take a patient’s pain seriously or treat it adequately, nearly half of chronic-pain patients have changed doctors at least once, and more than a quarter have changed doctors at least three times.
In an ideal world, every such patient would be treated by a pain specialist familiar with the techniques for alleviating pain. But “very few patients with chronic disabling pain have access to a pain specialist,” a team of experts wrote in a supplement to Practical Pain Management in September.
As a result, most patients have to rely on primary care physicians for pain treatment, obliging them to learn as much as they can about treatment approaches and to persist in their search for relief.
Medications
Most chronic pain patients end up taking a cocktail of pills that complement one another. These are three categories of drugs useful for treating chronic pain:
¶If the pain is not severe, nonsteroidal anti-inflammatory drugs, Nsaids for short, are often tried first. Some, like ibuprofen and naproxen, are sold over the counter. Others, like diclofenac (Voltaren) and celecoxib (Celebrex), are available by prescription. All have risks, especially to the heart and gastrointestinal tract, and may be inappropriate for those prone to a heart attack, stroke or ulcers. Nsaids must not be combined with one another or any aspirinlike drug, but they can be used safely with acetaminophen (Tylenol).
¶Several classes of drugs originally marketed for other uses are now part of the pain control armamentarium — antidepressants, especially the S.N.R.I.’s like venlafaxine (Effexor) and duloxetine (Cymbalta); antiepileptics like gabapentin (Neurontin) and pregabalin (Lyrica); and muscle relaxants like baclofen (Lioresal) and dantrolene sodium (Dantrium). These are often used in combination with specific pain-relieving drugs.
¶By far the most important class of drugs for moderate to severe chronic pain are the opioids: morphine and morphinelike drugs. Patients often reject them for fear of becoming addicted, a rare event when they are used to treat pain. Doctors often avoid prescribing them for fear of addicting patients, being duped by drug abusers or being raided by the Justice Department. Pain societies have established clear-cut guidelines to help doctors avoid such risks, including ways to identify patients who could become addicted.
Many patients and physicians do not know the difference between physical dependence on a drug (withdrawal symptoms result if the drug is abruptly stopped) and addiction (loss of control over drug use, cravings and continued use despite harm). As with other medications, like steroids and antidepressants, patients have to be gradually weaned from opioids to avoid withdrawal symptoms.
For patients with chronic, continuous pain, using a slowly released opioid like oxycodone (Oxycontin), morphine or fentanyl (administered through a skin patch) is preferred. These drugs minimize or eliminate the hills and valleys of pain and reduce the medication patients need.
The usual side effects — sedation, nausea, confusion — soon disappear except for constipation, which can be treated.
Pain specialists also recommend that patients taking slow-release opioids have on hand a fast-acting one like Percocet (oxycodone with acetaminophen) to treat breakthrough pain.
Methadone, a synthetic opioid, is another option for managing chronic pain, especially neuropathic pain, but it has to be taken several times a day. It is metabolized in the liver, along with other drugs that can affect blood levels of methadone.
Other Remedies
Some patients in chronic pain use a technique called TENS, for transcutaneous electrical nerve stimulation, in which pulses of low-intensity electric current are applied to the skin. The theory is that the pulses transmit signals to the brain that compete with the pain signals. Unlike drugs, TENS has no side effects or interaction with drugs, and it can be used at home.
Acupuncture, another increasingly popular treatment for persistent as well as intermittent pain, is thought to work by increasing the release of endorphins, chemicals that block pain signals from reaching the brain. It may be effective in relieving headaches, facial and low back pain, and pain caused by shingles, arthritis and spastic colon.
Guided imagery, meditation, relaxation therapy and hypnosis or hypnotherapy are often useful adjuncts to pain treatment, because they can reduce stress and take one’s mind off the pain. Likewise, cognitive behavioral (“talk”) therapy can help patients think and behave differently with respect to their pain. Other options include massage and hydrotherapy, the use of hot or cold water to reduce inflammation and promote healing.
Many chronic pain patients can benefit from physical therapy and exercises to strengthen weak supporting muscles and relax tight joints (which for the last two years has helped me control sciatic pain), or occupational therapy to learn new ways of moving, sitting and lying down to reduce irritation of or dependence on painful body parts.
Finally, a mental adjustment may be necessary to improve the quality of life of chronic pain patients, who have to accept that they may always have some degree of pain. Chronic pain tends not to go away, and changes may have to be made both at work and at play. The goals should be to reduce pain to an acceptable level and to learn how not to make it worse.
For Further Information
Here are some groups that can provide information on managing chronic pain:
AMERICAN CHRONIC PAIN ASSOCIATION E-mail: ACPA@pacbell.net; Web site: www.theacpa.org. P.O. Box 850, Rocklin, Calif., 95677-0850; (916) 632-0922 or (800) 533-3231.
AMERICAN PAIN FOUNDATION info@painfoundation.org; www.painfoundation.org. 201 North Charles Street, Suite 710, Baltimore, Md., 21201-4111; (888) 615-7246.
NATIONAL FOUNDATION FOR THE TREATMENT OF PAIN Pain@cwo.com; www.paincare.org. P.O. Box 70045, Houston, Tex., 77270; (713) 862-9332.
Correction: November 28, 2007
The Personal Health column in Science Times on Nov. 20, about treatments for chronic pain, misstated the purpose of one type of medication. When fentanyl is administered as a lozenge, it is designed for acute, breakthrough pain, not for chronic, continuous pain.
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