Living with Pain; A Patient-Writer Perspective

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Living with Pain: Wrong People Being Targeted in the War on Drugs

by MARK MAGINN, COLUMNIST on NOVEMBER 12, 2012

Readers who’ve followed this column know that I primarily focus on the collateral damage the war on drugs inflicts on physicians and pain patients. I see this damage as lethal to the practice of physicians who bravely treat chronic pain and lethal to the patients seeking the smallest reduction in the constant agony they live with.

So it’s no great leap to know who I think is being wrongly targeted by the combined forces of state and federal prosecutors, the Drug Enforcement Administration, Food and Drug Administration, politicians, Physicians for Responsible Opioid Prescribing (PROP), and some families who have lost loved ones to legal and illegal use of opioid medicines. Their main focus is to make these medicines as rare as possible for people living with pain.

The reason for this assault on pain patients is the mantra repeated in the media that as more of these medicines have been prescribed over the past decade there has been a corresponding rise in addiction and overdose deaths  – not only by drug abusers but by pain patients who use opioids

I don’t intend to argue these reported figures. Instead I want to address a growing but largely unstated feeling among pain patients who rely on these analgesics just to get out of bed in the morning. Over the last year I have spoken with many people living with horrible pain who express very similar reactions and feelings.

I have been sympathetic with efforts to stem the tide of diversion, addiction and deaths associated with legal opioids. I have called repeatedly on organizations like PROP, the California legislature and the FDA to adopt balanced approaches that will help reduce the diversion while protecting the right of people with pain to have access to physicians, opioids and pharmacies.

I have also sympathized with people who’ve lost loved ones to recreational and illegal use of medicines meant for people like me.

But no more. My patience with using to these deaths as a reason to clamp down on opioids for legitimate patients has worn thin.

Let’s take vehicle deaths in the U.S. as an example of the absurdity of this. Health Statistics reports that the U.S has the highest rate of vehicle deaths in western nations, with 15.5 deaths per 100,000 people. Belgium is our closest rival at 15.4 and the weighted average among western countries is 10.6 per 100,000. Of course, there are multiple causes for fatalities, including illegal behavior behind the wheel.

Whatever the causes, we tolerate around 40,000 fatalities yearly. That’s considerably more than the disputed figure of 15,000 deaths caused by opioid prescription medicines.

We have laws that govern our vehicle use and those found breaking laws are punished. I don’t see special interest groups like PROP and politicians like Congresswoman Mary Bono Mack of California trying to reduce the supply of vehicles to people who have licenses and use their automobiles legally and safely.

I have no patience for people who drive recklessly and die as a result. And I no longer have any patience with people who stupidly and illegally take prescription medicine with benzodiazepines and then wash it all down with a pint of Jack. Addiction and death following this behavior is entirely predictable and brought on by the person’s behavior.

The underlying problem with the illegal use of prescription medicine is the hysteria it has caused. You people illegally taking these medicines, no matter how you obtained them, are stealing from people who live with the agony of chronic pain. Your behavior and the resulting hysteria it causes is torturing and killing people whose medicines have dried up because of you.

The logic appears thus: Because thousands and thousands of people make stupid and illegal choices that leave them addicted or dead; people like me in harrowing pain should be denied the legal medicine that our physicians prescribe to make our lives a bit more bearable.

Let’s extend that logic a bit. Because thousands and thousands of our fellow citizens choose to drive under the influence, drive recklessly or drive while talking on their cell phones, the government should choke off the supply of vehicles, because fewer vehicles means fewer injuries and deaths. Need to go to work, go to the doctor, check on elderly relatives, or go grocery shopping? Too bad. Walk!

I know this will sound cold, but using the addiction and deaths of people engaging in illegal behavior no longer pulls at my heart or persuades me. The irony in protecting stupid behavior at the expense of people trying to escape torture and death is as breathtaking as it is maddening.

Teresa Shaffer, a long-time pain patient and advocate, has heard as many as 300 people over the last three years talk about how they will turn to street drugs if they can’t get their medication. This madness is turning pain patients towards the illegal behavior that is harming their ability to survive.

As Ms. Shaffer says, “They are, by turning to street drugs, not only endangering their lives, but they will become part of the problem, not part of the solution.”

There is already evidence that this is happening in states where the DEA has cracked down the hardest. There are also reports of people in pain who kill themselves after being denied the medicines that have kept them alive.

There is no getting around this: choking off the supply of opioid analgesics to people like me is short-sighted and murderous.

I want my medical care in the hands of me and my careful physician, not in the hands of some crusading right wing politician and PROP.

This was reposted here with permission from author and American New Report.

Mark Maginn lives in the east bay of San Francisco 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 can be found here

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

Opposing views, opinions and positions about this column are welcomed by American News Report and or Microcast Media Group. Publication or lack of publication of opposing views, opinions and/or positions does not imply, suggest or expressly reflect an endorsement or disapproval of the originating commentary on the part of American News Report or Microcast Media Group.

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12 thoughts on “Living with Pain; A Patient-Writer Perspective

  1. During the past two visits to my well respected pain physician I have been warned that the FDA/DEA are “clamping down on pain doctors” and the result means that he will be scaling back on the number of patients he can treat. I was sent to a new psych evaluation and was urine tested at both visits. I have violated no aspect of my pain treatment contract yet I live with the fear and stress that at any of my future visits I could be discharged with only a 30 day supply of medications because I was chosen that month to be a victim of him having to thin the herd. As if living with intractable chronic pain is not bad enough, now this? I have suffered from a congenital arthritic condition since I was a child. I toughed it out in life until I was 29 years old and had to have my first hip replacement in order to continue walking. Unfortunately the implant was defective and had to removed 2 years later. Since then I have had 3 revisions causing even further damage to the surrounding bone and tissue. Bulging disks, degenerative disk disease and bone spurs add to the problems. Would the doctors at PROP prefer that I continue to seek surgical options when prior surgeries have only served to worsen the condition? Would PROP prefer that I seek illegal drugs versus prescribed drugs from a licensed physician in a controlled environment governed by a strict contract? Or…perhaps PROP would prefer that patients like I simply disappear altogether? They stand on their highly touted credentials and state unequivocally that long term opiate care is wrong. Why is it that hundreds of thousands of pain patients living more productive lives with the help of pain medications prove otherwise? It may be news to PROP, but most of us aren’t worried about addiction because we have disabilities that will be with us for the remainder of our lives. Our best and only hope is that we continue to have access to pain relief medications until the day we die, so why should we worry about the problems associated with getting off these medications? Clearly the misguided doctors and pain clinics associated with PROP have chosen the wrong profession. Sadly they are taking that out on pain physicians who are dedicated to helping and the unfortunate patients they seek to help. Shame on PROP.

  2. Why are physicians pushing antidepressants that have caused devastating events such as suicides, attempted murders and robberies instead of prescribing narcotics? Antidepressants are being pushed on patients like candy. And if they refuse to take these harmful drugs, patients are being told there is nothing else they can prescribe from them. We are constantly bombarded with news about narcotic addiction while completely underplaying the seriousness and the deadly effects of taking antidepressants. As we all know, the risk of narcotic addiction is low when suffering from chronic pain. And if worse comes to worse, a patient can learn to overcome a narcotics addiction. A patient can NOT come back from the dead after committing suicide from antidepressants!

    1. Sky,

      All medications used for any disorder have an inherent risk to benefit ratio. Suicide in in fact one of the risks of antidepressants, but it is unclear if their underlying depression contributes to that risk when they’re on anti-depressants compared to those that take these drugs specifically for pain. But of course there are those that have both pain and depression. I think it’s unfair to pick on anti-depressants alone, just as its unfair to pick on opioids alone. But, you do have a valid point. Consider reading Antidepressants are not “Happy Pills” on this blog section.

  3. If it turned out some non-diabetics could get high on insulin, and if, as a result, some non-diabetics pinched insulin from medicine cabinets of the diabetics, or bought from an insulin black market, or (somehow) pretended to be diabetic to get insulin from doctors, and if some of those abusing the insulin died (as some would), would we even be *discussing* taking insulin away from diabetics? And lest anyone deem this an obscene comparison, in the past 20+ years I have lost enough chronic-pain-patient friends to suicide, seizures and even strokes that the comparison is, from my perspective, totally apt.

    1. I have chronic pain and I agree with you 100% . Also, I frequently use the insulin comparison as well. Especially when relatives or “family friends,” give me a hard about the medicines I take. It is a perfect analogy. People are deluded and misinformed if they believe that these two issues are not comparable.

  4. Marks article is how ALL chronic intractable pain patients feel these days.. I live in Florida where the situation for pain care is very scary these days and I know it is spreading across the country now. Doctors are becoming afraid to continue writing these life saving medicines that help intractable pain patients. Pharmacists either are not getting enough of the medicine or are afraid to fill the prescriptions these patients need. I have to wonder just how many ER dept visits have occurred because of these actions? I don’t understand, why at the time of when an economy that is suffering so horribly and coming back very slowly, why anyone would cause people so much hell and worry. The DEA went extremely overboard in a state where the mortgage housing crisis has been hit the hardest, the jobless rate is still very high. I wonder how many more are losing their jobs and homes because these problems? On top of all that, having to live under the stress of trying to obtain medications every month is nearly enough to cause someone a heart attack, stroke, or severe depression. If these patients can’t fill the medications or are discontinued their pain care how can they keep working? We all know what will happen to them. It unreal the timing of all this. So now we all have to fight like hell in 2013 to try and keep our rights to pain care or possibly watch the time turn back to the 1980’s. Why are we going in reverse with all this? Allowing many pain relief for over a decade an half and now rip the life saving meds right our from under people. How much more inhumane is this going to get? No matter how much pain anyone is having, we must keep fighting forward or the sucide rate will be enormous.

  5. Dr. Fudin,

    Thank you so much for publishing this article, it is articles like this one, that give people like me in intractable pain a voice. I am one of the lucky ones, after going to 7 pharmacies here in Florida, I was able to find one, that has been filling my prescriptions, how long is this going to last? Honestly, I don’t know, but for now, for today, I know that I will be able to get my medications, and I will be able to be in a little less pain, but not everyone is this lucky, and this is what worries me.

  6. I have seen , read and heard of so many good people in chronic pain suffer for no apparent reason. Time and time again I hear the stories of suffering people just wanting a little relief and why is it they cant find relief because certain people think opioids are not the answer and there has been no long term studies to prove opioids do indeed help those in never ending chronic pain finally find relief. Do we really need these studies ,just read the stories of thousands of people suffering in chronic pain saying the only relief they get is from the very opioids PROP is trying to put limits on. Also PROP is making it harder for those in chronic pain to obtain their pain relief because PROP thinks the long term use of opioids has not been proven safe and effective.
    Well I must say all the stories I’ve read so for is proof enough for me. Why is it this group of so called doctors see it fit to put those in the most horrendous chronic pain at risk of losing the only thing that helps them. How cold and barbaric you are Dr. Kolodny, how can you sleep at night. Just what made you such a cold hearted person, did someone close to you use or abuse these life saving medications .There is a difference you know, the safe use of opioids help not harm those that suffer every day of their life.
    Do you understand what I mean when I say suffer every day of your life, every hour, every minute of every day. If these medications improve the life of the suffering then why not let it be. Something somehow got under your skin and because of this every American that suffers every hour of every day are at risk of losing what helps the most because of your little petition you started to make things even worse for those already in a bad situation.

    I can go on and on and continue to write about what its like to live the life of a chronic pain sufferer but some people just don’t care and have no compassion.
    Its people like this that are making life just a little worse for all that suffer from never ending ongoing chronic pain and you sicken me.
    Each and every time I think about how PROP has moved forward trying their best to make things worse for people already suffering a life full of ongoing chronic pain it amazes me how you Dr.Kolodny continue to push forward with your nonsense.
    One day you will look back on this and realize what you have done and know that you did wrong. As I write this there are people out there suffering wondering how will they continue to live this way. Does this make you feel like more of a man, is this the way you strive for attention ,taking your anger out on the suffering people of the United States.

    Everyone know that you can make a difference ,don’t let this get you down just keep on doing what’s best for you and this nonsense will pass us by and we will look back on it one day and think what was PROP thinking. What did they really accomplish other than stress out a already stressed world full of people with never ending chronic pain.

    With much regards to the suffering,
    Mark S. Barletta

  7. Anybody leave comments on the original article on America News Report? I am going to try to after this. I hope I am allowed to. America News Report is heavily moderated and they are so pedantic. They allow random individuals to slander and commit libel against pain patients, but then they prevent pain patients from responding. I will be commenting under my other online handle painphantom, if they permit me.

    I would also like to specifically comment on here about the one commentator on the original article on America News Report. The commentator “David,” is always trolling on articles that support pain patients or on articles about pain patients in general. I was arguing with him before on another pain management article. He is an idiot. Don’t let him rile anyone up to bad. I wasted quite a lot of time trying to educate him and to explain basic science to him. It would be easier to teach a dolphin to perform neurosurgery than to teach “Dave/David,” science. Some people , like “David,” have rotted their brains with medical advice from New Age gurus and frauds like Kevin Trudeau and David Icke. “david,” has been brainwashed by these charlatans into thinking we are brainwashed and that their is a vast medical conspiracy going on that is forcing various patients into “taking dangerous prescription drugs,” while “hiding/destroying the cures for all diseases.” It is shameful and disgusting that PROP is willing to accept signatures and support people like that nut.

    Anyways just wanted to write about that here, since my comment(s) will probably not be approved on the original articles.

  8. It has become quite evident that we, patients with intractable pain, are not even considered worth discussing or saving because apparently, we aren’t really here.

    Every DAY/HOUR/MINUTE someone is involved in some life changing trauma (whether it is from an accident, trauma, diagnoses of some horrendous condition/disease) and by these increasingly savage methods, we are supposed to I guess just ‘suck it up’ and deal with the pain, because some idiots abuse medications and apparently ALL OF OUR agencies best response is just ‘medicine is evil’ and anyone that needs it, doesn’t really need it, is abusing it, or diverting it. If it wasn’t so darn sad, it would be hilarious. The BEST solution they can come up with is to just ‘do away medications’ because morons and their families blame everyone else BUT themselves for their own mess.

    WE, patients that live with pain EVERY SINGLE DAY/HOUR, have to pay the price because of % of society that cannot control themselves, and the % that should be protecting us cannot come to a intelligent solution other then threatening all those associated with these medications. How pathetic.

  9. Thanks so much, Dr. fudin, for posting this excellent article by Mark Maginn. I am a fan of his writing, and identify with both his personal struggle with pain, and his desire to advocate for others who need access to treatment. I too, find myself becoming less tolerant of the “PROP agenda”, and using the dealths and overdoses of some, as an excuse to cause MORE harm to the already marginalized, chronic pain sufferers, by attempting to limit their access to legal, legitimate, monitored, careful use of opioids. It is positively insane to me, that anyone would want to see someone like me, or Mark, or anyone else who suffers from serious pain conditions, to have this successful, safe, and effective treament, taken away or limited.

    I suffer from a rare, genetic, incurable and PAINFUL connective tissue disorder called Ehlers-Danlos Syndrome. Prior to finally being properly diagnosed by a geneticist, I tried (unsuccessfully) to treat my daily chronic and acute pain with non-opioid treatments for years. I spent a FORTUNE desperately trying to find relief from my severe pain caused by chronic joint dislocations of multiple joints, including: BOTH shoulders, my pelvis, spine, jaw, wrist, hips, feet, SI joints, knee caps. I dragged myself through major surgeries, rounds of PT, chiropractors, massage therapists, acupuncturists, rheumatologists, multiple non-opioid medication trials, “non-invasive” procedures, blocks, steroid shots, facet injections, heat / ice, topical ointments, braces, splints, wheelchairs, wraps, belts, toxic levels of daily Tylenol and NSAIDS, antidepressants, anticonvulsant, therapy, meditation….. NOTHING gave me any meaningful relief, and this went on for YEARS of my life! I lost friends, jobs, relationships, money, career opportunities, SLEEP, weight, and finally my SANITY. I mention all of this, because my patience is wearing thin from people saying things like, “try non-opioid treatments” or ” you need to find the CAUSE of the pain, and treat it” or ” opioids don’t cure pain”. Well, when the cause of the pain, is faulty collagen that your body produces, and there is NO CURE for genetic disease, and you wasted YEARS of your life trying to find “alternatives to opioids”, and a cure, pain control becomes about pallative care, quality of life, weighing all the risks, and realizing that as much as you HATE relying on pain medication to live, the alternative is NOT LIVING.

    There are THOUSANDS of people like me, who have tried everything else they could to treat their pain. There are also thousands of us who STILL use every other treament they can, in addition to opioids, to decrease their pain, even if it’s by 5%. For most of us, living a life in pain, is a difficult one. The little things that everyone takes for granted, like reaching up on a shelf, tieing shoes, washing your hair, climbing stairs….can be painful and scary! So, if opioid medication can decrease overall pain by 50%…. That is HUGE! 25% is HUGE! There is a doctor in one of the “PROP” videos, who says that some of his chronic pain patients “maybe” get about a 30% reduction in pain, so it’s just probably not worth the risk of opioids. WHAT???? That kind of pain reduction GREAT for the person in pain! It means the difference between SLEEPING and NOT sleeping! It is the difference between being able to enjoy doing something, and staying home in bed, because getting up HURTS TOO MUCH!

    Opioids allow many of us to function and live in ways that are simply IMPOSSIBLE to do without them. Period. Limiting access to this vital treatment is ABUSE. Forcing people back into their beds, sobbing and suicidal from pain, when there is medication to help them…..is ABUSE. DENYING patients access to opioids, because someone ELSE didn’t take them properly, or shouldn’t have taken them at all, is ABUSE. BLAMING chronic pain patients who find significant relief from pain with opioids, for what OTHERS do with theirs, is CRUEL and unjust. People who CLAIM to understand pain, yet want to make treatment for pain UNAVAILABLE or limited, are barbaric. Thank you Mark, for calling people to task on this! These maniacs need to be confronted, and should realize that for some of us, life ISN’T WORTH LIVING without pain control. Many people who live with chronic pain conditions are at risk, chronically ill, marginalized, disabled, and elderly. Is this how we treat this already disadvantaged population of HUMAN BEINGS in this country, now? By taking away, and limiting access to, what helps them suffer LESS? It is the recipe for disaster, and the formation of NEW epidemics of illicit drug use and suicide.

  10. There is already evidence that this is happening in states where the DEA has cracked down the hardest. There are also reports of people in pain who kill themselves after being denied the medicines that have kept them alive.

    There is no getting around this: choking off the supply of opioid analgesics to people like me is short-sighted and murderous.
    I’m Sorry sir, but I copied this. This is what I found most important, in our fight for our daily “HELP” to get out of bed, and maybe getting to the store. BUT, we wait, oh yes, we go to the store first, then maybe to the doctor, without taking our meds. I have signed so many contracts that I would not operate a car, etc. if I was on my meds. I follow this to the letter. Recently, in my area, a gentleman killed himself because he was “CUT OFF”. Jesus in Heaven. Stop the insanity to denying the people who really need opiods, the CHANCE AT A FEW REMAINING YEARS, AT PEACE. NO, a lot of us aren’t CANCER patients.
    I was an RN, and I worked at an understaffed psych hospital in Las Vegas. I had to litterally fight for my life. I had NO HELP. I ruptured L -4-5 S-1, and developed, “Arachnoiditis”. (they show it misspelled, due to the fact they won’t even recognize it.) I’ve said enough, I’m sick to death. I hurt, 24/7, 365, and my meds take the “EDGE” off. I have tried the non narcotics. All of them, and I’m not naming them, because it makes’ me sick to say, “Cymbalta, Lyrica, etc.” I have taken more MOTRIN, and enough of that to make my stomach bleed. Please, PROP, leave us the hell alone. I have had the MRIs, the Myleograms, I have had the CatScans,. I had a Ray Cage put in. It was a failed surgery, and I am blessed with the “spider disease”. So, please, leave us alone. Just let us have some peace!!!!! Herbert W. Neeland,,,,,,,Medically retired RN!!!!!!!

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