Haven't Got Time for the Pain
Many Complications of AIDS Bring Physical Pain, But Just Because It's Common Doesn't Mean You Have to Live With It
It hurts. It hurts every time you swallow -- because you've got oral thrush. It hurts every time you take a step -- because you've got peripheral neuropathy. It hurts to eat, but it also hurts if you don't eat. It hurts to lie in one position for a long time, but it also hurts to move.
Pain is part of all disease. It is the common condition of many people who have HIV... and it shouldn't be. Pain in all its forms -- sharp or dull, pulsing or steady, inconveniencing or excruciating -- can be controlled. But for that to happen, you have to tell your primary care provider that you are in pain. And to get fast, lasting relief from that pain, you also have to be able to describe that pain -- its type, its duration, its special characteristics.
To do that, you need to know the language of pain. Without it, you cannot communicate you discomfort in terms your care providers will understand. But you need something else as well: You need to let go of the notion that it is somehow weak or wimpy to complain about pain. It's not wimpy -- it's wise. Doctors and nurses cannot be expected to treat pain they don't know exists, so the process of pain management begins with you (see box). Learn the language of pain. Keep a pain chart, so that you can tell your care providers when your pains began, how long they lasted, and what activities increased or lessened the pain. And speak up. Let them know it hurts!
Pain is a painful subject for most people -- and that includes doctors and nurses. All of us share a common cultural conviction that people who complain about pain are exaggerating their discomfort to gain attention and elicit sympathy (and even, in some cases, to gain access to narcotic drugs). People in pain know better. They know that it hurts, but they also know that it is considered unmanly to complain about the pain -- even if you're a woman.
As a result, pain in patients with HIV disease is under-diagnosed and under-treated to an alarming degree. Only 15% of people with HIV get adequate treatment for their pain, and only 6% of AIDS patients who experience severe pain are treated with a strong narcotic drug, one that is capable of easing (or even eliminating) severe pain. Neuropathic pain, which is common in people with advanced HIV disease, can be successfully managed with a class of drugs known as tricyclic antidepressants, but only 5% of all patients with peripheral neuropathy get treated with these drugs.
This is a shocking situation, and it is one that you can help your care providers to remedy. For people with AIDS, especially for those with advanced disease, proper control of pain is perhaps the single most important determinant of life quality. When patients are in pain, nothing is pleasurable. Have your favorite food with your favorite friends -- and all you can think about is the pain. But when pain is adequately controlled, patients regain their dignity, their self-sufficiency, and the pleasure they derive from their favorite foods and friends, pets and programs, leisure activities and cultural pursuits.
To help your care providers help you, begin by studying Table 1. It lists five categories of pain -- by duration, by severity of symptoms, and by cause. It tells you whether depression and/or anxiety may be contributing to your discomfort. This is important, because these symptoms can -- and should -- be treated as well. And, finally, it tells you what classes of pain-killers are used to treat each category of pain. This is also important, because pain is often undertreated -- and Table 1 will tell you if you are getting the right type of medication for your type of pain.
Analgesia -- medication for pain -- should be regarded as mandatory in all AIDS patients with discomfort, but drugs are not the only means of alleviating pain. Patients may also want to consider a number of other approaches to pain management, among them hypnosis, biofeedback, electrical nerve stimulation, physical therapy, nerve blocks, and acupuncture (see "Sticking It to Peripheral Neuropathy"). As Dr. Paul A. Volberding, the editor-in-chief of AIDS Care, points out in the lead editorial in this issue, these approaches to pain management are often labeled "alternative" therapy -- as if you had to choose one or the other.
You don't have to choose. You can combine acupuncture and tricyclic antidepressants for your neuropathy, for example. Or you can combine hypnosis, biofeedback, and a soothing, medicated throat spray for the pain you feel when you swallow. Think of these as complementary therapies or concurrent therapies, not as either-or choices. "If it works for you," as Dr. Volberding says, "then it works. Never argue with success."
Diagnosing and treating pain
The clinical management of all pain begins with an attempt to identify -- and then treat -- the underlying cause of the pain. For many patients, this underlying cause cannot be identified or treated. Fortunately, this situation does not pre-empt effective pain management, it simply shifts the focus of treatment from the cause of the pain to its effect. Your care provider doesn't need to know the exact source of you pain to treat it, but he or she does need to know that you have pain.
Regardless of cause, the objective of pain treatment is three-fold: to reduce discomfort, decrease anxiety, and return you to your previous level of function. There are no easy formulas for achieving these objectives. The treatment of pain must always be individualized, because individuals exhibit a remarkably wide range of pain tolerance and an equally wide range of responsiveness to drug therapy.
The vast majority of all complaints of pain arise from the first two categories of pain listed in Table 1: acute and subacute pain. Here the underlying problem is usually tissue injury resulting from a single event (such as a fall, a cut, a fist fight, an automobile accident). For these forms of pain, the essence of effective clinical management is to provide adequate pain relief while the body heals itself.
The next two categories of pain, ongoing acute and recurrent acute, are the result of continuing tissue injury (from a rash, an infection, a malignancy, a tumor). Pain in AIDS is often a combination of these two types of pain, and for people who have ongoing or recurrent acute pain it is imperative to follow the "pain ladder" developed by the World Health Organization (Table 2 [available in print version]). Each step in this ladder represents a further step in the management of the patient's pain -- steps that are necessitated by progression of disease or progression of symptoms.
On the lower rung of the W.H.O. ladder are aspirin and the non-steroidal anti-inflammatory drugs, or NSAIDs , such as Advil, Nuprin, Rufen, and Motrin. These agents have a "ceiling effect" -- a dose above which they provide no additional pain relief, but they also have no tolerance limits or addiction potential.
Acetaminophen, which is marketed under many names, the best-known of which is Tylenol, is not an NSAID. It has no peripheral anti-inflammatory properties, but it does relieve pain and it can be given in combination with NSAIDs and with narcotics (whose activity it can potentiate).
Managing moderate pain
If pain persists or gets worse despite treatment with aspirin, NSAIDs, and/or acetaminophen, stronger medication is called for. Many narcotic analgesics can be used to treat moderate AIDS-related pain. The most convenient route of administration is oral, but skin patches or rectal suppositories can also be used. Both prevent abrupt swings in drug levels in the blood, which keeps analgesia fairly constant and provides steady pain relief.
Care must be taken to allow adequate time for gastrointestinal absorption of these drugs, a process that can take up to 90 minutes. And follow-up doses should be taken well before drug levels in the blood drop to subtherapeutic levels. This means that you need to take your medications exactly as your care provider has prescribed them -- before you begin to experience a recurrence of your pain, rather than after you begin to feel discomfort.
The therapeutic goal of any pain-relief regimen is to achieve an adequate level of drug in the blood stream, a level high enough to assure relief of "background" pain when you are resting. If you experience pain during activity, additional medications should be available to you, to blunt this "breakthrough" pain. To manage both forms of pain, you will need two forms of medication: a long-acting drug, taken on a fixed schedule, to eliminate background pain; and a rapid-onset medication, one you can use on an "as needed" basis for breakthrough pain.
Managing severe pain
Narcotic analgesics are rarely used for mild pain, but they are frequently prescribed for moderate to severe pain. Many people with advanced HIV disease develop chronic pain, and it is entirely appropriate to use sustained-release narcotic analgesics to reduce this pain. Patients with severe pain should ask for opiate-based drugs, and care providers should prescribe them. The specific agent chosen is less important than the principle that maintaining a near-constant level of opiate in the blood stream is desirable when patients have deep and enduring pain.
In this context it is important for healthcare professionals to remember that opiates need to be given in escalating doses, until the desired effect is achieved. In the clinical management of intractable, long-standing pain, there is no specific dose of opiate that should be given -- and no ceiling above which further dosing is inadvisable. Therefore, the opiate dose should be pushed to whatever level it takes to make the patient comfortable -- especially at the end of life.
The special problem of neuropathic pain
The W.H.O. pain ladder does not take into account neuropathic pain, from which many AIDS patients suffer, either as a direct result of some disease process or as an indirect result of taking certain antiretroviral drugs. Neuropathic pain may not respond to narcotic analgesics, so care providers need to treat this form of pain with a combination of medications, beginning with tricyclic antidepressants.
These drugs, called TCAs, are generally given once daily, usually at bedtime. The benefits of TCA therapy are three-fold: 1) As their name implies, they combat depression -- which is, unsurprisingly, a common condition in people with HIV. 2) Because they produce mild sedation, they are a sleep aid. People with HIV need to maintain as normal a day/night wake/sleep cycle as possible, and TCAs help regularize this pattern. 3) They reduce the stinging, lancing pains associated with peripheral neuropathy.
Modern medicine is capable of delivering a high degree of pain control to most patients with advanced HIV disease -- without sacrificing those individuals' sense of self and their ability to think and function. In the vast majority of cases, carefully considered dosing of one or more pain-killing drugs can extinguish the patient's pain while maintaining his dignity and comfort.
Howard L. Rosner, M.D., is Associate Professor of Clinical Anesthesiology at Cornell University Medical College and Director of Pain Management Service at The New York Hospital.
Back to the August 1997 AIDS Care contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.