Living with Pain: Lies, Damned Lies and Medical Research

Living with Pain: Lies, Damned Lies and Medical Research

A recent study published in the Journal of Opioid Management indicates that pain patient abuse of opioids is largely overstated.

The investigation by Carl Roland of Pfizer, Inc. covered a large database of over 70 million patients collected from 2005 to 2010. Those who were prescribed opioids were found to abuse the medicine at a rate of only 0.195%.

bigstock-man-taking-medication-13886486That means less than 2 out of every 1,000 pain patients abused opioids.

While the rate of opioid abuse more than doubled from 2005 to 2010 (from 0.067% to 0.145%), it is still  far, far lower rate than the ”epidemic” claimed by some, particularly the Physicians for Responsible Opioid Prescribing (PROP), which is opposed to the current prescribing patterns of opioid medicines.

I will not repeat the same mistakes that PROP and other critics of opioids for pain patients make. To wit: I will not make broad claims based on this evidence. It is just one study that needs to be repeated by others to ensure the reliability and repeatability of the findings.

However, I think I can fairly state that this study is highly suggestive. And because of the enormous size of the sample and the study’s design it’s at least as credible as those studies used to claim hysterically high numbers of pain patients abusing, diverting and becoming addicted to prescription opioids.

As with any new area of research, the initial forays into the subject are preliminary. Scientific knowledge is a slow deliberate, incremental process with often contrary results calling for further investigation.

However, as we have watched in the debate about the medical use of opioids, some activists are entirely too quick to use preliminary results as “evidence” to press for policy and legal changes to the use of these medicines. This can lead to grave, sometimes deadly consequences.

In many ways, that is simply human nature. We are very quick to seize on any results that seem to confirm our own ideas and prejudices. But research should be the antidote to the psychological proclivity to reach quick judgments.

Therefore, it is deeply troubling to me and others when those well trained in research methods pounce on preliminary results as final confirmation of their opinions.

That this happens among the general public isn’t alarming, but professionals who can affect public understanding should know better. The consequent rush to judgment is disappointing at best, and at worst can mislead authorities into wrongheaded, dangerous policy and law.

This type of mistake seems to be especially prevalent when it comes to drugs. It is especially pernicious at the junction of pain, medicine, regulations and law enforcement.

For example, I am committed to knowledge based medical practice wherein my doctor and I decide on the best course of my treatment for me without government regulators and law enforcement agencies interfering in that treatment.

Yes, new drugs need to be vetted for safety, efficacy and embedded in best practices. But I want organizations like PROP and the DEA to stay the hell out of my doctor’s consultation room and stop interfering with treatment that works for me and millions of others.

We all know that opioids can become very dangerous when misused. But it has always scalded my intellect to have others tell me how dangerous these medicines are and how my use of them should be tightly regulated.

It seems as if each time I go to pick up my medicine, I am faced with yet another interfering regulation pronounced by the state, insurance companies or the large pharmacy where I do business. And pain patients are expected to cooperate no matter how intrusive, stupid or inconvenient these demands are.

It’s a fact of life that policy and law enforcement decisions will be fought in the political arena, often using dueling research results. And it is in that area that the average consumer is often lost in the arcane language of statistics.

What is to be done?

We as pain patients need to become educated consumers of research. The basic ingredients of research are fairly easy to comprehend; but it is often the details, like the composition of sampling groups, operational definitions, and confidence intervals, that overwhelm the uninitiated.

The first place to look for the consumer is to the “conclusion” or “discussion” section of the report. Another resource is to ask our physicians to look into a particular study and explain it.

Research results should never be taken as the final word, as most results are provisional and subject to the discovery of new knowledge. There is rarely an “a-ha” moment. Our decisions should be made by the weight of the evidence and on the advice we trust.

Remember, research results are often used in political contests. Each citation should be approached with care, thoughtfulness and a bit of skepticism. That applies to the research report I mentioned at the start of this column – which was funded and conducted by Pfizer, one of the world’s largest drug makers.

My bias is obvious. I think that the results of this report land closer to reality than many others.

As all results are provisional, I would hope that interest groups like PROP and regulatory agencies like the FDA and DEA would exercise more care and caution.

They should think long and deliberately before interfering with life-saving treatment.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here

National Pain Report welcomes other opinions.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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There are 21 comments for this article
  1. S. Reveles at 2:14 pm

    Thank you so much for the column and all the comments. It helps to know that I am not alone in my frustration with the way the new “regulatory” practices are limiting my ability to get my prescriptions filled. It is very clear that the paranoia is being caused by fear of being sued or charged with “mismanagement of opiates” by the DEA, even though their own actual figures show that the number of abusers is actually quite small. I agree that opiates are often overprescribed, but for those of us that truly need them, I think it’s a travesty when our system won’t allow prescriptions legitimately prescribed by a specialist to be filled. To Ms. Kierstyn, I must say that as a fellow RN, I find your comments to be uneducated and misdirected. You seem to be basing your opinion on your own practice and biases, not on actual research and currently accepted practice. It is well-known that physical dependence on opioids is NOT the same as addiction. It is also a fact that many patients have been diagnosed (or misdiagnosed) with fibromyalgia, simply because doctors have been unable to find something more specific that they can treat. I would be willing to bet that you have quite a few overweight, underactive and emotionally unfulfilled patients who have been told that they have fibromyalgia, which really translates to “muscle pain”. Any of the three problems above can be treated very successfully with a “nutritional and structural” program that reduces them, and if that is working for your clinic, then you are indeed providing a needed service. However, that small subgroup does not by any stretch of the imagination encompass the rest of those who suffer from chronic pain from a multitude of other causes. Good nutrition and exercise are always an important part of maintaining the best health possible. However, all chronic pain can NOT be relieved just by diet changes and exercise programs (including myofascial release). For those of us for whom that is true, medication still remains the primary source of reliable relief. For some strange reason, there seems to be a constant implication that this is somehow “wrong” unless one is a cancer patient (which somehow translates to a perception of “always getting worse” and “going to die anyways”–which also is untrue). It is analogous to telling a diabetic that they should never become “addicted” or “dependent” upon insulin. Obviously, many diabetics do much better with good diet, weight loss, and regular exercise. However, they can NOT all be “cured” of the need to take insulin–in exactly the same way, not all chronic pain patients can be “cured” of their need to take opiate medications to relieve their pain. The only difference is that pain patients don’t die from their pain until they commit suicide–and in fact, the rate of suicide is statistically much higher in chronic pain patients who are not receiving adequate pain relief. In addition, some effective alternative treatments are very expensive and many of us are on limited incomes due to being disabled. For example, I find massage very helpful.. However, it costs a minimum of $45/ hour, which means it is usually beyond my budget. Likewise, there are other alternative programs, such as Pilates exercise programs ($60/hour) or myofascial release, but they are even more expensive. So for those of you who feel you have found “the” answer, please keep in mind that most of us have tried virtually everything within reason that we could, and this is what works best for us. It doesn’t mean we aren’t open to new ideas or treatments, but we HAVE tried, and in many cases still use other treatment modalities besides opiate medications. It does not mean that we should for some reason be persuaded that what works for us is “wrong”.

  2. Stephen S. Rodrigues, MD at 2:59 pm

    I needed to revisit this article in an attempt to understand the mindset of the writer and responders AND I would like to clarify a couple issues as they relate to pills and pain and regulations.

    Pain especially complex chronic pain requires ongoing therapy with myofascial release therapy with and without needles. If you attack this pain early in the development it more than likely can be effectively “cured.” Without the need for opiates for life. So in essence, I would consider myofascial release therapy to be a mandatory part of all chronic pain management.

    If you are on opiates for life for chronic pain and you don’t have cancer and you are not involved with an ongoing myofascial therapy plan, you are mismanaged. Like a diabetic without diet, exercise, weight loss and getting blood testing.

    A sane society needs rules, regulation and some authority to keep things peaceful.

    An insane society has unfair chaotic rules that will allow one to be cheated, scammed and abused thus giving the illusion of freedoms, wellness, liberty and happiness. Weak regulations will breed chaos, greed and evil.

    I don’t think some here realize how important having a guardian or referee to oversee the rules of the game. Some will say they want less regulations because that’s what they believe, but a less regulated free market will consume you up and spit you out. I would like to hear folks say we need fair and equitable regulations.

  3. Arenda at 9:21 am

    @KayRedmon You are spot on! I don’t need the government telling me how I feel and how I should be treated. Also I am glad Stephen Rodrigues is NOT my Doctor!

  4. Tina at 5:45 am

    Well I agree that other things should be used but along with medication, however, most are disabled and don’t have the money to go buy all the herbs, etc. or pay for physical therpy or even the cost of driving there so what would you suggest we do when the system doesn’t allow for enough money to get all the alternative treatments. I would love to try a lot of things I know of that would help but I can’t afford it although I do what I can with exercises to help my pain but it is not something that can be fixed unless I don’t want to ever walk again. So think before judge.

  5. Stephen S. Rodrigues, MD at 4:05 pm

    @Michelle, I speak from 30 yrs of medicine. I do know a lot about pain and pain therapy … not so much about other issues. What you say has an effect on people’s decision making and thought processes. If you chose not to take the advise fine but to expose your bias here and possible discourage another from research and education, is not fair to them.

    As you see I am a doc, I see about 15 complex pain patient in my office every working day. I have some experience as to what works and does not work. I see cancer patients, RA, FM, Migraines suffers, i treat folk who have failed spinal surgeries, shoulder, hip and knees surgeries, carpal tunnel issues, elbow issues, have nerve pain issues, Diabetes with neuropathy, Irritable bowel issues the list is long.

    I even treat a form of blindness.

    Guess what … all of my patient are on a special diet, an aerobic program, take Vits and minerals, soak in Epsoms baths and all that jazz too.

    I have learned and I am attempting to educate anyone who wants to learn. “When the student is ready the teacher will appear.”

    The one key “no-no” in my book is to not do all those activities and to only treat pain with a pill.

    If you like I have a couple article on this site. Feel free to ask any question you wish. I have a list of the most common question on my website and a link of all the extra thing everyone needs to do to be well.

  6. cyndi at 6:55 pm

    I wrote a letter to my congress men. And it wasn’t very nice. The deal here is that they wish to stop addicts. But in the process, they are killing chronic pain patients. If I don’t take something, I can’t move. I am disabled, I have three chronic pain conditions that all are related to my central nervous system. If there was a cure for me, do you really think I wouldn’t do it, and just stay on pills? Hell no! I would crawl anywhere if I needed to, to cure myself of this pain I have 24/7.

    They have totally went the wrong way.

  7. mark maginn at 1:27 pm

    I left out a very important fact in this column: Pfizer is the maker of opioid medicines. That should be factored in when assessing this research and its results. When assessing any research evidence and conclusions it is always necessary to take into account who is either doing the study or who is funding it. It is up to the reader and other commentators to come to their own conclusions about this.

  8. Colleen Markey at 9:11 am

    I personally think if any blame is to be laid at anyone’s feet it really is the physicians. I have a severe rheumatoid arthritis and the very first thing my Dr wanted to prescribe was methetrexate. I am LUCKY I have a pre-existing skin condition(hidradenitis suppuravtiva) that kept me from taking immune suppressors that led me to find alternatives- I take NO prescriptions for my RA, not even ibuprofen for pain. I had to file for Disability as the pain I was living in was incredible. I had to research for myself alternative treatment, and also discovered quite a few facts about RA I was never informed of by my Dr. Now-5 years later I still live in pain (much less) and feel I have more control over my disease. You would think my Dr’s would be overjoyed-they are NOT. In fact I get treated w/o any acknowledgement of my RA since my current Dr says I am not ‘treating’ it, so she wont address it. So all the Dr’s I have seen since my diagnosis would rather me on the drugs than treat herbally, with diet and physical therapy. So the Dr’s claiming rampant drug abuse and overuse-it’s you and your peers own fault. You treat your patients like liars and morons as if they are not smart enough to decide for themselves so you withhold information, threaten and talk down to us( I dont know how many folks have informed their Dr of side-effects-tumors, cancer, etc-only to be told it is NOT from the drugs they are taking, even when said effects are listed as side effects!!). I find it amazing the medical professionals that would make comments as if all folks suffering from some chronic pain are aware of all the alternatives- or even better, can afford them or have insurance that covers these alternate treatments! Especially when so many have Dr’s telling them out-right that there is NO other way to treat-as in my disease. I refuse to let my treatment be worse than the disease itself and refuse to let the medical community treat me as if I DID something to deserve this, instead of show some compassion, for if not for the Grace of God, it could be them!!

  9. Joy H Selak at 7:25 am

    Excellent article and just what I have been waiting to read. Based on my own experience, and others in the chronic pain community, these research statistics seem realistic to me. Your advice to patients to stay abreast of research is right on.

    I find it alarming when politician’s and regulators feel compelled to make rules to control the behavior of others, and when those rules do not effect them personally at all. Pain medication policies need to come from within the community of experienced physicians and pain patients.

    Thanks for this great summary.

  10. Doc ForthePeople at 4:50 am

    Thank you for posting this article that speaks the truth. Pain patients and their doctors have been “profiled” prejudiciously for too long. They have been easy targets for misguided efforts to fight the “War on Drugs”. Eventually the truth may win, but we have a long way to go.

    It is however doubly tragic that the state and federal regulators have bought hook line and sinker the myth that “pain patients” are the source of the many ills of the misuse of opioids! It is tragic that law enforcement has targeted the real victims rather than the true criminals. The stance seems to be: “If we get enough pain patients we will get a real drug dealer! Therefore get all the pain patients and the easiest way to do that is to get the doctors!”

    Now we have numbers: Wipe out the threatment of 500 legitimate patients just to get 1 drug misuser…..and since misuse does not mean drug dealer, the would probably have to wipe out the treatment of 2000 or more legitimate patients to catch one dealer!

    And against that background the regulators have done little to stem the tide of illegal drug dealing!

  11. kevin gk at 8:22 pm

    I am sorry, but the doctor who says nature will take its course and fix you has never experienced chronic pain. I have Failed back surgery caused by a doctor. I can exercise my butt off and I will never get better. I have nerve damage and have scar tissue that causes unrelenting pain 24 hours a day. How dare you get on your high horse and preach that there are better ways to treat pain. I would love to see you live in my body for a year and see what pills you are taking at the end of the year.

  12. Stephen S. Rodrigues, MD at 7:52 pm

    Ms. Redmon, I’m in primary care and I also see at least 13 complex pain patients per day.
    In the majority of cases docs are free without any true oversight to rx pain pills at will.

    This article, to me is an example of a couple of issues;
    >85% of the chronic pain patients are on opioids, plus and NSAID. That is 3 meds in pills. AND are on no “Therapy.” In some patients and elderly, that is polypharmacy, mismanagement and not good medicine.

    About 10-20% are seeing multiple docs who have no idea as to who else is prescribing them pain meds. Most are not on a “tight leash” and can call their docs and get 5-10 pain pills a day. Call a “friend” to get more at will via the black markets, hundreds of pills are available. Pain pill facilities are everywhere!

    Finally in Texas 2012-13, we have a data bank where I have access to verify who-what-whens of a patient’s opiate use. Before I was blind not knowing a history and with the HIPAA laws. A provider can now do a better job a really keep track of what the addicted and abusive patients are doing in the private sector.

  13. Michelle at 7:40 pm

    Stephen – you just don’t get it. Diet, exercise, and all that jazz won’t take away the pain of a burn patient, cancer patient, someone who has been in an accident, etc. Please think before you type. Once you start having that same level of pain, you will realize how mean you sound to the rest of us.

  14. Michelle at 7:38 pm

    I call BS on S. Kierstyn RN’s post. Until you have been in chronic pain, don’t you dare try to speak for any of us. Needing pills to survive is not addiction. Do your patients a favor and stop bashing western medicine. Most pain patients have tried EVERYTHING else already and it doesn’t work, therefore narcotics are the only lifeline they have left. Stop trying to take that away. When people turn to suicide because they can no longer live in pain, doctors who refuse to prescribe pain meds should be held accountable.

  15. Stephen S. Rodrigues, MD at 6:33 pm

    Overstated??!! I have to say that it is more likely underreported and thus underestimated. I see too many elderly patients over 75 yrs overmedicated on opioids, dizzy, constipated, altere mental abilities. This is a travesty.

    It is up to the uneducated to find the data and be enlighten. It’s so easy and lazy to jab back to a comment to show your ignorance and egocentric nature. It’s a lot harder to open your mind and take your time to be enlighten.

    Reasonable evidence comes from a wealth of experience gained by managing many cases on the frontlines. This evidence which is so common sense will probably not be considered publishable. Well I’m here to confirm that structural and nutritional changes will help to restore a better quality of health and wellbeing.

    Please note with chronic pain, a single entity narrow focus care plan will do harm. Pain pills only plans should be avoided. The goal is to assisting the natural healing and should be a part of a well balanced medical plan. Here is a short list of areas needed to be covered.

    Top on the list are corrective and a restorative sleep, aerobics, stretching, range of motion activities, massage, vitamins, mineral and trace elements. If you read my past posts, you would find that I consider Acupuncture and myofascial release therapy to be the best medicine in medicine.

  16. Kay Redmon at 6:20 pm

    The use of opioids seems to be very well managed by our Health System & Pharmacies. Those who are prescribed these drugs are not allowed to keep their repeat prescriptions therefore stopping you from attending another Pharmacy to get a repeat before it is due. The number of pills must coincide with the daily dosage & if you try to get your script refilled earlier than it should be due, you are refused. You must be down to your last days doseage before you can get your script re-filled. The health department must also give your Dr the authority to prescribe such medication & this must be backed up by your pain specialist stating that you are on these drugs because attempts at pain relief from other drugs have not been effective. You must be suffering from chronic disabling pain, before such drugs are prescribed for you. And when you look at the statistics, it does show the rate of addiction from those who take prescribed opioids & other that are gained from dubious means, the rate of prescribed medication is much lower than the non prescribed means. True sufferer’s do not abuse the system, they comply with the dose directed by the Dr.& the Health Department records show this to be so. Like anything there will always be the one bad apple in the barrel that does make it hard for the genuine population, but all in all, the system does seem to comply with the guidelines..

  17. EED at 5:38 pm

    Mark, another great column. You are so right that pain patients are already regulated enough and they are expected to comply with unlimited useless and stupid intrusions. There are so many hoops to jump through. Just let patients and doctors decide. I do disagree on 1 thing— it IS a problem when the public misinterprets preliminary research as the final conclusion. This means that many people do not understand the scientific process. American schools have their work cut out for them.

  18. EED at 5:31 pm

    Kierstyn, there is a difference between dependence and addiction, first of all. It is doubtful that “almost every person” at your clinic is addicted! This comment shows confusion and a misunderstanding of what addiction is. Addiction is a complex disease with physical, social, and psychological components. Secondly, most doctors push Lyrica, Cymbalta, and Savella for fibromyalgia, not opioids. Thirdly, I 2nd Janny’s comment— where is your evidence that fibromyalgia pain is eliminated via “structural and nutritional care”?

  19. Janny at 4:33 pm

    @ S. Kierstyn
    Do you have any info to support your claim about structural and nutritional care eliminating the pain of Fibromyalgia?

  20. S. Kierstyn RN DC at 2:10 pm

    As the Director of The Fibromyalgia Care Center of Oregon, your statements do not ring true. Almost every person who presents for care here is already addicted (or is in the process of weaning off that that approach to their pain concerns. People are discourage that any attempts to control their fibromyalgia is headed by ‘take this narcotic. Finding out that pain can be eliminated through structural and nutritional care is a complete surprise to them. It is sad that traditional western medicine has more concern about pharmaceutical sales than about relief of disease.