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The Opioid Solution and HIV: From the Frying Pan Into the Fire

By Dave R.

February 1, 2013

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This article is Part One of a two-part piece. Read Part Two, "Opioid Dependency: What's It Got to Do With HIV?."

"Pain is experienced by people and families not by nerve endings." -- Dame Cicely Saunders

A nightmare for some and a godsend for others, some people become addicted to opioids because opioids have become their recreational drug of choice, while others become addicted because their pain symptoms are so severe that they have no choice. Either way, a problem has arisen which threatens social stability in whole communities, especially in North America, and makes authorities unsure which way to turn.

You may see this as a "far from my bed" phenomenon but as I will explain later, many people living with HIV find themselves involved with opioids before they know it and have to live with the consequences of this sort of treatment simply because there is no better way of treating their pain.

First some statistics to highlight the scale of the problem:

  • According to the US Institute of Addiction Medicine, in 2007, 23 million people over the age of 12 needed treatment for substance abuse in the USA.
  • Between 1992 and 2003, abuse of prescription drugs increased by 140%.
  • Given that Americans represent 5% of the world's population, 80% of the world's supply of opioids and 99% of the global availability of hydrocodone is used within the US borders.
  • Because opioids are legally available as prescription drugs, this availability has been matched by a 63% increase in opioid-related deaths between 1999 and 2004.
  • Many studies have shown that abuse or misuse of these drugs averages out at between 20% and 58% of people who have been prescribed opioids for chronic pain.
  • In 2005 it was established that almost 2 million Americans were opioid dependent but more alarmingly ...
  • Approximately 4.7 million teenagers and adults used opioids for non-medical purposes and ...
  • Over 32 million Americans reported having used them for non-medical purposes at least once in their lives.

Shocked yet? Actually these statistics were assembled before the current explosion in opioid addiction and abuse that has recently begun to hit the headlines across the western world. The figures, five years later in 2012, will be far higher; and the number of deaths and serious health problems resulting from both opioid prescription and the black market will now be alarmingly high. It's a problem that is almost unrecognised in its expanse, and a social time bomb that we still seem unwilling to acknowledge.

Still, why should this be relevant to people living with HIV? The answer is that many people with HIV are also chronic pain patients, something that is often overlooked when reading about the negative aspects of being positive.

According to The Well Project, many people with the virus have to manage chronic pain symptoms for the following reasons:

  • Peripheral neuropathy (between 25% and 40% of people with HIV) -- nerve damage with over 100 causes, amongst which are the virus itself, diabetes, cancer treatment, toxic medications and even high alcohol consumption.
  • Abdominal pain (26% ...) -- as a side effect of some HIV drugs; parasitical infection or bacteria; problems and irritability in the intestines, including irritable bowel syndrome; inflammation of the pancreas caused by some HIV meds; too much fat in the blood; or drinking; bladder or urinary tract infections and in women, uterus, cervix and ovary conditions.
  • Headaches and migraines (17% ...) -- from mild to severe brought about by a variety of causes including certain HIV drugs
  • Joint, muscle and bone pain (5% ...) -- can also be from mild to severe and be HIV-related to forms of arthritis, rheumatism, bone disease and bone density problems. It can also occur when using drugs for high cholesterol and especially hepatitis.
  • Herpes pain (5% ...) -- many people may see herpes as par for the course when you're sexually active but a cold sore, or sore on your genitals, represents its mildest form. If you've ever had shingles, you'll know that the pain can be excruciating and as the herpes virus can frequently re-occur, it's something that can plague your life if you have HIV.
  • Skin problems and rashes -- side effects of certain HIV medications or other drugs.
  • Chest pain caused by lung infections such as TB, bacterial pneumonia, or PCP pneumonia.
  • Mouth pain caused by ulcers or fungal infections.
  • Pain due to cancer in all its forms.
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According to pain.com, in 2005, 8% of HIV individuals were on long-term opioids (especially Oxycodone and Tramadol) for severe pain, which was more than double the non-HIV population. However, the good news is that the explosion in opioid use since then has not been paralleled in the HIV population. This is possibly because opioids are prescribed for valid reasons to HIV patients and there is less incidence of recreational opioid use which has worsened the problem in the general population.

Before everybody writes in to say that they're fine and have never had a problem with the virus or the medication, please be reassured that you are some of the lucky ones. Of course only a certain percentage of people living with HIV will suffer chronic pain in one form or another but a significant proportion of those will eventually have no option but to start taking opioids as the only painkillers that will help. It's not a choice; some pain is so severe that it just doesn't react to over-the-counter medications, or medications meant for other diseases. Opioids, if used properly, are a very effective solution. The problem is that they are not always used properly, as the statistics above clearly show.

Recreational use of opioids could also be said to be the result of psychological 'pain': fulfilling a need to escape from the harsh edges in life (it could also be simply the well-known search for a kick that has got out of hand). However, recreational drug use and the reasons for its popularity are really subjects for other articles. What we need to know to arm both ourselves and people we know with knowledge, is that it gets out of hand when people don't realise how quickly and easily they can become seriously addicted.

So, with the facts out of the way, it's perhaps useful to illustrate the problem by giving some examples of what opioid abuse and the authorities attempts to crack down on it have been doing to people.

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See Also
Ask Our Expert, David Fawcett, Ph.D., L.C.S.W., About Substance Use and HIV

Reader Comments:

Comment by: T Mills (Los Angeles) Thu., Feb. 7, 2013 at 10:42 pm EST
Dave - I recently read a couple of your posts and I believe you have some strong points. As a double-positive myself and a person living with chronic pain from a severe back injury, I would not be able to function without opiates. These are powerful drugs yet we currently live in a country where prescription medications for pain, anxiety, depression, etc have created the largest cohort of drug dependent adults in U.S. history. We lack a progressive approach to pain management. People have been abusing opiates and other drugs for centuries and I think approaching this issue with punitive measures (such as the miserable war on drugs), is not the answer. The media will sensationalize the problem of drugs as there is now a crack down on Human Growth Hormone because of Lance Armstrong when the reality is HGH in many ways saved the lives of many HIV + people like myself when wasting was causing me significant problems. I would be open to inviting a group of medical professionals and pain management experts to the table. I've even thought of jump starting a non-profit to assist persons with HIV/HEPC that is compassionate, realistic, allowing persons with chronic pain who NEED opiates much like the methadone clinics - methadone is in itself an incredibly effective pain killer and despite it's mythology is extremely cheap. (That's probably why the drug companies don't want to push it and the association with heroin addicts.) But as a double positive I take HIV meds and pain relievers daily because for me they save my life and enable me to hold down a job, a relationship, the ability to exercise and to function. I understand your point but the explosion of narcotic pain killers is a bit sensationalized as I think newer drugs will hit the markets and the streets that are more powerful and despite all our efforts people will always abuse anything that makes them feel good. Let me know if you know of any organizations that have progressive approaches to pain. Thanks.
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Comment by: nyclic (nyc) Thu., Feb. 7, 2013 at 6:16 pm EST
this whole thing irritates me in general. i have had acute episodes of very painful illness in which i needed the strongest thing out there. i am not a chronic pain patient or pain reliever user. removing what works leaves those who are in desperate situations with inadequate pain management. ever had shingles? three times here including facial and into my right ear. felt like an ice pic in my skull. what about those really unfortunate metastatic cancer survivors? can only be worse.
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Comment by: Dave (Flrida) Thu., Feb. 7, 2013 at 4:01 pm EST
Since my move to Florida from upstate New York I have been faced with the affects that opioid abuse has had on those of us that depend on opioids to have a "normal" life! I have had to use opioids because of the severity of my pain issues for some time now & when I moved to Florida the, "Opioid Abuse Center", I was faced with the inability to find a pharmacy that carried my medications & when I did, I was faced with judgement from pharmacists in turn, causing some delays on getting the meds & having to suffer partial withdrawls more than once. Those that abuse these medications effects the lives of those of us who are trying to have some sense of a regular life & it hurts. It scares me to think of the day when I can't get the medication that works for my pain because of others. I literally have had nightmares about this since my move to Florida & hope that those of us on the medications we need can be protected from an all out ban. I am able to walk & do my artwork because of opioids otherwise, I would be practicaly bed ridden unable to do for myself. Opioids have been a "miracle drug" for me & many others who suffer. Thank you. I just had to say that, thank you again. Dave
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Dave R.

Dave R.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

I also have my own personal website and write for PositiveLite.com.


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