February 1, 2013
This article is Part Two of a two-part piece. Read Part One, "The Opioid Solution and HIV: From the Frying Pan Into the Fire."
"Only the patient knows how intense and frequent a pain is - a pain is what the patient says it is." -- Palliative caregiver
So what is the 'real and present danger' to us as people living with HIV, its co-morbidities and any resulting extra health problems? If your pain does not respond well enough to analgesics and other drugs (anti-depressants, anti-convulsants and other drugs meant to interact with nerve signals to the brain), you may be advised to move onto opioids of one sort or another. This shouldn't alarm you too much, despite the content of Part One of this article.
Opioids work really well, if they are kept under control and you are consistently monitored by your doctor or specialist. He or she should make every effort to ensure that you don't become addicted whilst still getting the most relief out of the pain killing effects. The problems often begin if the doctor writes you a prescription and then leaves you to get on with it. You should always discuss any potential side effects and problems before beginning with opioids. You should get his or her reassurance that you will be carefully monitored and that the right level of opioid medication will be found with as little risk of addiction as possible. Anything less is really unacceptable but the reality is often harder than this advice suggests. If you're given a ten minute appointment, it may be difficult to discuss things in any detail because the doctors are under so much time pressure. However, in this case, you can be sure that a little time spent establishing ground rules now will save much more of the doctor's time later if it goes wrong. If you want to get off the drugs at a later date, make sure that the close monitoring continues: weaning yourself off opiates is no casual matter and isn't easy; you're going to need support. In your own interests, make sure you get it.
The American Institute of Addiction Medicine points out that the World Health Organisation recognises opioid addiction as a brain disease. Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person's life. They also say that opioids prescribed as painkillers are similar to heroin and can be equally addictive.
Addicts will go to any lengths to satisfy their need, including shopping around the various doctor's surgeries and clinics, stealing from friends, family and work and using the internet to order them from whatever suspect source. The withdrawal symptoms of coming off opioids should never be underestimated. It's always possible but it's going to be hard -- you'll probably need help, guidance and understanding. Never try to go cold turkey with opioids; you don't need to; just get the right advice. Some people, however, will continue their addiction rather than face the social stigma of admitting their problem and seeking help.
The medical authorities and pharmaceutical companies are finally reacting to the problem and working on ways to reduce the potential for pill abuse by developing safer alternatives with longer delayed release effects, to try to cut out the possibilities for instant highs. They are also busy studying the best ways of directing and re-directing pain signals to the brain by creating more refined opiate derivatives but this will take time, especially as each new product has to go through hoops before it is officially approved.
In the meantime, millions of people suffer from substance use and abuse and many more are affected by someone else's problems. The best we can all individually do is keep our eyes open in our own circles. If you know someone who has been prescribed opioids for chronic pain, tactfully try to let them know that you will be there for them during any difficulties and watch out for signs of a personal struggle with the drugs. Of course this is true for all substance abuse; from over-eating, to alcohol and smoking, to heavier medication abuse. If for whatever reason you personally take opioids for recreational purposes, I can't judge but please make yourself aware of the facts and the dangers and if you feel that control is slipping away and the drugs are taking over, at least tell someone you trust. You really don't want to become another drug abuse statistic, especially if you are also living with HIV; life is surely difficult enough!
I don't want to come over as alarmist; the statistics surely speak for themselves and opioids are powerful analgesics that when properly and sensibly prescribed and administered, can bring much needed relief from physical pain and emotional suffering. However, they aren't aspirins and need to be treated with the greatest of respect. If you take them because your pain is unbearable, you have to see them as a positive treatment; you may not have any choice, but knowledge is power and being aware of what they can do if not wisely used is half the battle against potential problems. If you're honest with yourself, you may become more aware by looking at other things in your life. Do you find it difficult to resist smoking, drinking, eating, for instance? I know I have a history of being open to temptation and may have a 'suggestible' personality. Perversely, that knowledge helped me stop smoking, drinking and certainly helped when coming off Oxycontin. Knowing that you are susceptible to mild addictive behaviour may keep that thought in the back of your mind when dealing with opioids. Never be afraid to pester your doctors for help - they can't read your mind.
Finally, the following by Jane Ballantyne and Steven LaForge from the official journal of the American Pain Society sums up how difficult the whole subject is.
"When patients are maintained on opioids for the treatment of pain, there is currently no satisfactory means of distinguishing true addiction from problematic behaviors caused by a variety of factors other than addiction. Unfortunately, advances in understanding the neurobiological foundation of addiction have not been matched by any improvement in physicians' ability to recognize and diagnose the condition. There is no single diagnostic marker of addiction, no definitive change on brain imaging and as yet no genetic markers to provide a reliable prognosis of risk. When it comes to iatrogenic opioid addiction, the clinician is faced with even greater difficulty: the behaviors encountered do not resemble those outlined in the criteria for addiction to illicit drugs...
... One of the great difficulties of quantifying, recognizing, and treating iatrogenic opioid addiction is the subjective nature of the judgment on whether behaviors have crossed an ill-defined boundary between problematic opioid use and addiction. This judgment then becomes dependent on the reporting person's experience, prejudices, and knowledge."
Ballantyne JC, LaForge KS. Opioid dependence and addiction during opioid treatment of chronic pain. Pain. 2007;129(3):235-255
Opioid dependency is clearly a huge problem, partly because of the dichotomy of its causes. How can you balance the medical need for perfectly legal and effective drugs, with the potential for side effects and addiction? Addicts may become addicted because the opioids have overcome the original medical need and prescription parameters, or because they're seeking a buzz or a high? The end result for both can be addiction, even if the original motives were poles apart.
The lines are blurred and nothing is just black and white but there is no doubt that it's another underestimated problem of the modern age, which is having wide ranging effects of certain groups in society. The authorities are, as is often the case, reacting instinctively by using sledge hammers to crack nuts by locally banning this and that and criminalising doctors and chemists, who have to turn legitimate patients away.
It is complex and we have to hope that the pharmaceutical companies will ignore their cash cows and quickly come up with safer but equally effective alternatives. Let us hope that people living with HIV are amongst the most knowledgeable and level headed in society and that the problem within our community will be constrained, even if it can't be removed.
This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.
Read Part One of this piece, "The Opioid Solution and HIV: From the Frying Pan Into the Fire."