When It Comes to Severe Pain
Doctors Still Have Much to Learn
by Jane Brody February 15, 2005
My surgeon did a marvelous job replacing my arthritic knees (see story below) and, at the same time, straightening my terribly bowed legs when, at 63, I decided to have knee replacement surgery.
Although a class given at the hospital before the operation repeatedly emphasized the importance of adequate pain control, the surgeon and his helpers were not experts in treating prolonged, debilitating postoperative pain.
They are hardly alone. Pain management is not generally taught as a part of medical education, not even to residents in orthopedic surgery. As a result, most doctors are clueless or unnecessarily cautious about treating pain, especially chronic pain like that caused by incurable neurological or muscular disorders.
They are especially ill-informed about opioids, which are synthetic versions of morphine, the most potent painkillers that can be taken by mouth.
As Dr. Jennifer P. Schneider writes about opioids in her book Living With Chronic Pain (Healthy Living Books, $15.95), "Fear and lack of knowledge of these drugs prevent many doctors from prescribing them for people whose pain is caused by anything other than cancer."
Yet, she continues, in 1995 The Journal of the American Medical Association lamented the reluctance of physicians to prescribe needed pain medication. The journal stated: "Bringing about significant change may depend on empowering patients to demand adequate pain treatment. This empowerment will not come easily, especially if opioids must be used for pain relief and if the pain is of a nonmalignant origin."
Pay attention, current and future patients. The journal's message is really for you: Learn what you can about pain control and insist that experts in treating pain help you through it.
A PAINFUL LESSON
I did not know that the dose of the sustained-release opioid OxyContin (oxycodone) that I was taking -- 20 milligrams twice a day -- was a ''low'' dose until seven weeks after surgery.
I also did not know that the other pain drug I was prescribed for breakthrough pain, Percocet, was really short-acting oxycodone plus acetaminophen. Because my pain was frequently intolerable despite the two doses of OxyContin, I was taking as many as 10 Percocets a day, incorrectly using it as a maintenance drug.
Yet, when I complained about the severity of my pain, which had me crying for several hours a day, the surgeon added an anti-inflammatory drug and told me to take half the OxyContin and Percocet. No surprise that my pain remained unrelenting and occasionally worsened.
I called the surgeon's office weekly and reported my minimal progress in pain control, but at no point was an increase in pain medication suggested, nor was I referred to a pain management specialist on the hospital staff.
When, at seven weeks after surgery, I spoke to Dr. Schneider, a Tucson-based specialist in pain management and addiction medicine, she chastised me for not being more insistent about getting adequate pain relief. The trouble is, when you're experiencing intense pain, it's hard to be proactive about anything.
I know now from speaking with several doctors who routinely treat chronic pain patients that my story is hardly unique. Millions of people suffer needlessly year after year because their doctors do not know how to treat pain properly and don't refer patients to doctors who do know.
Many doctors are afraid to prescribe narcotic drugs like oxycodone, fearing they will create addiction problems. But that in fact rarely happens to chronic pain patients who don't have a history of addiction. When a pain patient needs increasing doses of a narcotic, it's nearly always because the pain worsens, as often happens in patients with advanced cancer. Patients do become tolerant to side effects, like grogginess, but rarely to the pain-relieving properties of these drugs.
WHEN NERVES RESPOND
Furthermore, undertreatment of pain can actually cause a chronic problem when the nervous system changes in response to continuing pain signals. Nerves can become permanently hypersensitive to painful and nonpainful stimuli, like touch or vibration. With chronically undertreated pain, the painful area can also spread well beyond the original injured site, as happened to a man I know who now has to take 500 milligrams a day of OxyContin.
"The way to prevent this undesirable outcome is to avoid repeated pain signals," Dr. Schneider said. "Long-acting opioids like OxyContin, which provide many hours of consistent pain relief, are more effective than short-acting opioids, like Percocet, at preventing pain. It takes less drug to prevent recurring pain than it takes to treat it."
However, Dr. Schneider wrote, "Because breakthrough pain is common in patients with chronic pain, patients being treated with long-acting opioids often need a second prescription for an opioid with rapid onset" to treat breakthrough pain. These second medications are "meant for transiently increased pain, not as part of your regular pain regimen," she explained.
When I read this, I realized I was on the wrong track, taking too little of the long-acting drug and too much of the short-acting one. The latter had, in effect, become my maintenance drug rather than the one I used now and then when, say, I had physical therapy or spent hours riding in a car.
Surgeons may know a great deal about cutting, repairing and sewing up, but they are not experts on pain control, though I think they should be. I know of an orthopedic surgeon in New Jersey who won't see his knee replacement patients for two months after surgery because he doesn't want to see them when they're suffering.
As it turned out, my internist knew far more than my surgeon about treating pain. He has many elderly patients with chronic pain and knows very well how to treat it. I realize now I should have sought his help from the beginning. Or I should have asked to be referred to a pain management specialist at the hospital where I had my surgery.
LET'S FIX WHAT'S BROKEN
First and foremost, patients need to be proactive and insist on the help they need. If patients are not able to do this for themselves, an advocate should do it for them.
Second, every person with prolonged or chronic pain should become educated about the huge range of medications, therapies and complementary remedies available to treat pain.
"Most chronic pain patients receive more than one type of drug and end up taking a cocktail of pills," Dr. Schneider said. The many possibilities include anti-inflammatory drugs, muscle relaxants, drugs like anticonvulsants that treat nerve pain, antidepressants (in doses much lower than that used to treat depression), topical analgesics and sleeping pills.
In addition to using combinations of drugs to control pain that does not respond to one remedy alone, Dr. Schneider writes that patients may be helped by physical therapy, exercise, acupuncture, electrical stimulation, heat, massage, yoga, hypnosis (including self-hypnosis), cognitive-behavioral therapy, biofeedback and various relaxation techniques like guided imagery, meditation and progressive muscle relaxation.
A New Set of Knees Comes at a Price: A Whole Lot of Pain
Total knee replacement is now one of the nation's leading orthopedic operations, and it promises to become even more popular as the population ages (and grows heavier) and the body's most vulnerable joints fail to withstand the punishment of decades of use and abuse.
Debilitating wear-and-tear arthritis is the major reason that knee bones are being replaced by two-pound pieces of metal in people who wish to remain mobile, pain-free and physically active in their later years.
Dozens of people I know who've endured the surgery say it has changed their lives very much for the better. They can walk again with comfort, even play tennis and ski, after years of sitting on the sidelines.
THE TIME WAS RIGHT
And so, at age 63, I decided to have both knees replaced. I had been nursing my increasingly arthritic knees and bowed legs for two decades -- at first with ice packs and ibuprofen whenever I did strenuous activity, graduating to daily Vioxx and Tylenol with growing limits on what I could do without life-limiting discomfort.
The last straw (after giving up tennis, ice skating and cross-country skiing) was my inability to hike or even join my friends on our morning fitness walk around the park. Even Vioxx (before it was withdrawn from the market) was not keeping me comfortably on my feet.
I consulted one of the world's leading orthopedic surgeons, a man who had done thousands of knee and hip replacements, including 500 double knees. He was very reassuring.
With the aid of physical therapy, he said, I could expect to be driving again in four weeks and well on the way to full recovery in six. Even the reputedly horrific postoperative pain associated with this surgery, he added, is now fully controlled with morphine through epidural anesthesia supplemented by extra doses that the patients can administer.
A neighbor who had one knee replaced last summer had warned me, ''The first four weeks are hell,'' but I discounted her prediction, given that I was in good health, top physical condition and slender going into the surgery.
A preoperative education session at the hospital emphasized the importance of good pain control because without it patients cannot do the physical therapy essential to a good recovery.
I gave two preoperative blood donations (one for each knee), arranged for inpatient rehabilitation after leaving the hospital and thought I was fully prepared for what lay ahead.
I was not prepared for the swelling. When I arrived at the rehab center on the fourth postoperative day, I weighed in at 120, 15 pounds more than I weighed at surgery.
My legs were filled with fluid, hard as rocks, with no visible bones, veins or tendons. In four days I was down to 103, but my legs continued to swell and stiffen for more than two months.
As for pain, the surgeon was right on one count: the morphine was bliss -- not a bit of pain the first two days after the operation. Then it was withdrawn and replaced by two narcotic oral pain medications, which worked pretty well for about five days.
But as the various tissues in my knees began to heal and physical therapy got more demanding, the pain grew worse and worse, until at three weeks I found myself moaning, then crying for much of the day despite the narcotics and repeated icing of my swollen knees. Sleep was my only relief, but one can't do that 24/7.
Thinking something must be radically wrong, I returned to the surgeon 26 days after the operation, only to be told my knees looked perfect on X-rays and that my mobility placed me in the top 2 percent on the recovery scale: I could walk and go up and down stairs, albeit slowly, and I could fully extend my knees and bend them 90 degrees.
As reassuring as this assessment was, it did nothing to control my pain. So he changed my medication to a potent anti-inflammatory drug and suggested that I gradually cut back on the narcotics. That proved to be something of a pipe dream, at least for the next several weeks. And there was no sleeping without a nightly dose of Ambien.
I learned much later that I could have been prescribed a much higher dose of narcotics with no ill effect and much better pain control. No doctor I reported to, however, including the surgeon, even considered that.
The fact is, This operation, which involved cutting my leg bones to straighten my bowed legs, hurts like hell. To the few patients I spoke with who had relatively little postoperative pain, I say, ''Count your blessings.''
My biggest complaint was not that I was suffering. (The pain at five weeks after the operation had definitely eased on most days, although my right knee hurt much more than the left. So much for driving!) My biggest complaint was that I hadn't been warned. I was presented only with the best-case result, not the worst.
TOO SORE TO KNIT
I complained to my internist that in the first three postoperative weeks all I had been able to do was read three simple novels. Even knitting and crocheting seemed too much for me, let alone the many projects I'd hoped to tackle during my self-assigned six-week recovery period.
My doctor explained why: ''Intense pain is all-consuming. It takes over your life, and it's impossible to focus on much else.'' In fact, it changes your personality, and now I understand far better why patients with chronic pain can be so difficult to live with. It's hard to be pleasant when all you want to do is chop off the part of your body that hurts so much.
Continuing physical therapy is critical to a full recovery, but at first I overdid it by going three times a week. I have since cut back to twice a week to give my body more time to recover between sessions. It seems to be helping.
Compounding my physical discomfort was the emotional turmoil caused by insane insurance policies. My plan from the outset was to go from the hospital to an inpatient rehabilitation facility, which my policy covers for patients with double-knee replacements.
The insurer, however, wanted me to leave the hospital on the third day after surgery, when I was still restricted to using a bedpan. My hospital-provided case manager (every hospital must have them these days to negotiate with insurance companies) argued for an extra day, but that was covered only because I experienced severe chest pains (due to indigestion, it turned out) on the fourth day, not because my walking was limited to a few steps.
Then the insurer limited me to four days of inpatient rehabilitation, not nearly enough in my view, especially since I was going home to a four-story house. After six weeks of post-op, I still could descend stairs by bending only one knee.
But the most irritating insanity was the limit placed on my sleep medication: 14 tablets every 23 days. Was I supposed to sleep only every other night? Who came up with such a formula? Certainly not anyone who has ever had major surgery. Although my husband asked, the pharmacy failed to tell him that I could pay for the drug myself, about $4 a pill, far preferable to lying awake in pain all night.
I'm still waiting for that blissful day when I can walk better than I did before the surgery, get through the day without multiple pain pills and sleep without medication. I'm reasonably sure that day will come in the next few months, but I must admit I'm fast losing patience.
People ask, ''Are you sorry you did two knees at once?'' Not at all. In fact, I can't imagine going through this twice, and both knees were in horrible shape and needed to be replaced.
I've met several people in rehab who had one knee done and need to replace the other. But having endured the first replacement, they say they are now very hesitant to do it again.