WHEN HIV IS A PAIN

First published in Resolute!, September, 1998

Not to be reproduced without the permission of the author.

"Don't be a Wimp!"

I bet that is what you are telling yourself when faced with pain. And you deny it, try to ignore it or minimize it. You don't bring it up with your doctor, nor does he/she bring up the possibility of pain with you. And yet you feel it gnawing away at you, or as one of my client's described neuropathy "stabbing like knitting needles". Pain can make you depressed and discouraged. Pain can eat up your energy and make you fatigued, and want to stay in bed. Pain can diminish your quality of life. In a study published in the Journal of the Association of Nurses in AIDS Care(Jan/Feb 1998;9(1):22-30) pain was directly correlated to quality of life, according to researchers William Holzemer, RN, PhD. The same has been found by other researchers with cancer related pain. The difference between the two, however, according to Donald Abrams, MD (1994, NEJM; 330(10):657-662) is that "in contrast to pain in cancer, pain in HIV disease will more commonly have an underlying treatable cause." But pain can't be treated if you don't talk about it. Charles Cleeland, PhD of the Anderson Cancer Center in Houston elaborates in a Journal of the American Medical Association editorial (1998;279:1914-1915), "The best pain management requires an informed patient who is willing to report pain and to voice complaints if pain is not controlled...Unfortunately, it is the rule rather than the exception that patients must volunteer that they are in pain before health care professionals take notice ... Patients who expect pain relief and know how to request it... are more likely to have better pain control."

Pain has been dramatically under treated. Paul Volberding, MD, the director of the AIDS program at San Francisco General Hospital, observes, "Patients with AIDS have a lot of pain, and it's not talked about as much as it really should be." William Breitbart, MD of the Memorial Sloan-Kettering Cancer Center in New York adds, "The story of pain in AIDS has been a story of neglect." In his study (1996, Pain; 65:243-249) he found that in a sample of more than 500 patients, up to 30% in the early stages of HIV, and about half of those with "full-blown" AIDS experienced "significant pain" (defined as frequent, persistent pain for at least two weeks). Yet Breitbart's team found only 15% were adequately treated.

Two groups are also significantly less likely to receive an appropriate response to pain from their healthcare providers: those who were infected by IV drug use were 1.8 times more likely to be under treated; and women who were twice as likely. There is a common belief that it is important to avoid potential abuse and addiction by people with addictive personalities. There is some basis for this, and the prescription of benzodiazepines, for instance, is contra-indicated (Valium & Ativan, etc.). However, the level of pain is directly proportionate to addiction immunity . In an article by Mark Lema, MD, PhD, (1998, Hospital Medicine, 34(5)11-21) from the State University of New York School of Medicine and Biomedical Sciences, he states: "In truth, pain prevents addiction, and the chance of a patient with cancer pain becoming addicted to opioids is less than one in 20,000."

There are also alternatives for pain other than the prescription of narcotics. Simply considering anti-inflammatory medications can relieve pain, or the use of antidepressants. Another whole area of pain relief does not involve the use of pain medication at all. It does involve exploration and education. For instance, in Holzemer's study they found that therapeutic massage was used in only 5% of the cases, but had a 75% effectiveness rating.

Pain is not addressed sufficiently because doctors are not adequately trained in how to assess and manage pain, and as Kevin Mallinson, RN, MSN of Johns Hopkins Hospital has observed, "Undertreatment is often the result of racism and AIDS phobia among residents and interns."A study of cancer patients in nursing homes conducted by Roberto Bernabei, MD from Brown University (1998, JAMA;279:1914-1915) found blacks were 63% more likely than whites to be totally untreated for pain. Mallinson goes on to say, "The attending physicians don't see patients long enough to do adequate pain assessment and management." The problem of the time a doctor can spend with a patient has only been aggravated by managed health care. One doctor told me he is under pressure to not spend more than eight minutes with any one patient.

Another pressure on doctors is the over regulation of medications by government agencies. This situation appears to be getting worse rather than better. As I am writing this column the House Judiciary Committee voted to limit doctors' ability to help people die, directly trying to thwart Oregon's Death With Dignity Act. The bill, HR 4006, the Lethal Drug Abuse Prevention Act, introduced by Sen. Don Nickles, R-Okla, will now go up for a vote on the House floor. The relevance of this bill to our subject of pain, is that doctors are going to be even more reluctant to prescribe large amounts of narcotics. For this reason even the conservative American Medical Association opposed the bill. Sen. Ron Wyden, D-Oreg. said, "This bill would tie the hands of doctors who treat those in severe pain and the terminally ill in their final months. When patients, particularly those with terminal illnesses, are suffering from extreme pain, doctors often prescribe high doses of medication for them, even if the patient has no intention to end his life, because the medications are the only way to provide comfort." The Republicans voted down amendments to the bill that would exempt pharmacists from responsibility, which will put doctors under even more scrutiny.

WHAT YOU CAN DO ABOUT PAIN

Pain is not purely a physiological phenomenon. It has psychological factors that greatly impact its intensity. For instance the Holzemer study found lower pain ratings with higher ratings of perceived psychological support. Pain is more a perception than a sensation. For this reason, your underlying beliefs about your pain will greatly influence its nature. For instance, if you believe your pain will only get worse -- it probably will. Pain is also associated with emotions. So if the circumstances of your pain are related in your mind to trauma, like being assaulted, then your pain will be worse in how intensely you experience it and how long it lasts. Likewise, if you associate HIV with shame you are likely to experience pain that is worse than other PWAs with the same physical condition. Since pain is so intimately linked to psychological factors, you can positively influence your pain with techniques not involving or in addition to medication. Bruce Eimer, PhD and Arthur Freeman, EdD in their book Pain Management Psychotherapy (1998) say, "If we can remove the suffering from pain, then, in a manner of speaking, we may be able to reduce the pain." (p. 159).

Kevin Mallinson, RN, MSN advises that keeping a "pain journal" can be very helpful. He says, "It is a process of acknowledging and communicating with the pain, and thereby establishing some greater level of predictability as to when it is going to get better or worse. By paying attention to your pain versus trying to ignore it, by having a relationship with your pain you can better control it." In addition, when you see your doctor you can bring in your pain journal and give him highly specific and detailed symptom information. To assess your pain try using the following list of adjectives from the McGill Pain Questionnaire (1987): throbbing, shooting, stabbing, sharp, cramping, gnawing, burning, aching, heavy, tender, splitting, exhausting, sickening, fearful, punishing. You also want to rate its intensity using a SUDS (Subjective Units of Discomfort) Scale of 0-10. Zero is no pain at all, and ten is worst ever. Also note the location of the pain, the time of day, and if you observe any contributing factors, ie. having just eaten, fatigue, depression or being emotionally upset, etc. Another thing to note is any automatic thoughts, such as "I'm being punished," or "This is hopeless." In the management of pain we want to impact six factors: how long it lasts, how intense it is, how often it comes and goes, what triggers it off, and what you think and feel about the pain.

You need to take an inventory of your "misery index" in terms of the thoughts that aggravate your pain. These can fall into the following categories:

1. Overgeneralizing: "I will never get better." ; "I will always be suffering."

2. Catastrophizing: "This is it. This is the beginning of the end."

3. "Should" Statements: "I should be stronger than this."

4. Low Frustration Tolerance: This is what Albert Ellis calls, "I-can't-stand-it-itis."

5. All-or-Nothing, Black-and-White Thinking: "I am either in excruciating pain or not in pain at all."

6. Disqualifying the Positive: "I am back to square one, after all this effort I am still in pain."

7. Personalization: "No one cares I'm in pain."

Any of these cognitive distortions can impact the level of pain you experience, and need to be recognized, challenged and substituted with more reasonable and positive affirmations. It can make a difference if you are telling yourself such things as, "I can handle this pain."; "Stay calm, relax."; or "This will pass".

Another technique is the use of distraction. Try doing mental arithmetic, recalling a time when you were pain free, talking to someone, refocusing your attention on your environment. What do you see, hear, smell, feel besides pain? Try introducing some counter stimulation such as pinching the webbing between your thumb and index finger. This is historically where the idea of biting the bullet came from.

A third technique is direct awareness of the pain. Picture your pain as a color, a shape. Breath into your pain, and imagine the air flowing and soothing the area of your pain. As you exhale try to imagine the pain draining from your body. Focus on your breathing. See if you can change the color of your pain to more soothing hues, ie. angry red to blue. See if you can change the shape of your pain, for instance can you soften the edges?

A fourth technique, related to the last two is transformational imagery. Imagine the area becoming numb, or floating, or that the pain is in someone else's body, or that you are in another context like a soldier in battle. Try imagining heat or anesthetics. Another variation on imageryand distraction is to imagine yourself in a relaxing place such as by a stream in the mountains or a beach, and try to involve all your senses. What does the beach look like; the sky, the water, the sand, etc.? What are the sounds of the beach; the birds, the waves, the ships on the horizon, etc.? What does it feel like; the sand, the temperature, the humidity, the sun on your skin, etc.? Can you smell and taste the salt water? You are noticing your pain less!

Chronic and/or intense pain, probably more than any other factor can demoralize you, make you depressed and make you want to give up. But if you feel some sense of control, some sense of predictability, some sense that it can get better then life is worth living again. Good luck!

Last messed with November 15, 2001