Chronic Pain — 12 November 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.

Mark Maginn

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

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About Author

Mark Maginn, Columnist

Mark is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation.

(58) Readers Comments

  1. TO Pete Jackson, WITH PROP
    Oh! Please! : “even the medical professionals opposed to the PROP proposal acknowledge that they have “serious concerns about the safety of chronic opioid use.”… OF COURSE! If DEA is treating Doctors as criminal for prescribing it duh!
    If I was a Doctor I would be concerned too given that I could lose my license, the one I worked so hard, over 10 years, to get.

    Paulette, Mark S. Barletta, Debra, Keri, Kayt, Dr. Know, I AGREE WITH YOUR COMMENTS

    NOW YOU: Pete Jackson, Guest Columnist
    WHO WROTE:“To all of the commentors who asserted that the PROP proposal would cut them off from their supply of opioid drugs”
    BECAUSE THEY ARE BEING WATCHED! THEY ARE SCARED; THEY ARE BEING TREATED LIKE CRIMINALS! AND they do not want to lose the license they all worked so hard for!
    Is not that they can prescribe, is that they don’t want to anymore with all the restrictions, regulations, and finger pointing they are getting!!! Now with your so called PROP even more of the responsibility is on them.
    AS IT IS WITH ALL THIS DEA issues violating HIPPA regulations, having access to our medical records, prescription history, etc. Doctors and patients being “watched” by DEA, and treating both Doctors AND patients as criminals!
    What we are saying is: all that already making it almost impossible to get our medications that allow us to have a better quality of life. Now THIS!
    Do you really want to stop kids from dying of an overdose? Well, then keep a closer eye on what your kids are doing when you are not around! Talk to them! Be their friend!
    Do you ready want to get a “WAR on Drugs” going? Well, go and chase the Drug Cartels!
    How about having DEA going after them instead of us and our doctors!
    OH! That’s right. I forgot it is easier to go after the weaker right? It is also more profitable given that we all know how corrupt the “system” is.
    So you go after the “small guy”; the patients, the doctors, the pharmacists.
    Drug Cartels won’t hesitate getting anybody’s heads chopped: DEA, Law enforcement, or anyone getting in their way. So, we pay the price!

  2. I haven’t read all the comments, but I want to add one. I hope it’s not redundant.

    The problem with the current situation is that it has become big money for the government. Going after doctors means money for lawyers, money for courts, money for policemen. You would not believe how many people’s entire salaries are based on the War Against Doctors. As a defendent in one such battle in February, 2013, I commented to my lawyer, “This is WRONG!. Treating doctors like they are drug lords from South America, confiscating all they own as “illgotten gain” based on a 1973 law that was designed to put drug lords in prison for life, and now they are doing it to doctors instead. Why hasn’t something been done to stop this?” Her answer was “It won’t change. There’s too much money in it.” And she’s right unless we the people change it. I hope to be a part of that change after my acquittal in February. Please consider having me come to any area in the US to speak on this after February.

  3. I always love reading your articles and especially love this one. You put political correctness aside and speak from your heart. I have a small FB Fibro page and share all your articles with my community.
    Keep up the wonderful work, Mark.

  4. Mark’s column generated a lot of interest and comments from readers (the most we have ever had) — and we appreciate the effort everyone made to keep the tone civil on a very complex and sometimes emotional topic.

    Mark felt compelled to respond to one reader’s comment, which we have posted on our Facebook page. Readers are welcome to continue the discussion there.

  5. The National Pain Care Act was passed by the House a number of years ago. Despite being brought up for 3 sessions of the senate (it has to be reintroduced in new session. It was in ’03, 07, 09 and never voted on.) A summary, and click to full text, can be found here:

    It begins as:
    (1) increase the recognition of pain as a significant public health problem in the United States;

    (2) evaluate the adequacy of assessment, diagnosis, treatment, and management of acute and chronic pain in the general population and in identified demographics groups that may be disproportionately affected by inadequacies;

    (3) identify barriers to appropriate pain care; and

    (4) establish an agenda for action to reduce such barriers and significantly improve the state of pain care research, education, and clinical care in the United States. Allows the Secretary to enter into an agreement with another appropriate entity if the Institute of Medicine declines.

  6. The problem is I have never seen an article about the “epidemic”, deaths, and overdoses that delineates how many of the abusers are those for whom the drugs were prescribed vs. how many are illicit users. As long as we are all lumped together those of us who rely on these medications to get through the day we always be seen as the bad guys.

    Carol Jay Levy
    author A PAINED LIFE, a chronic pain journey
    Women In Pain Awareness Group
    The Pained Life, 30 years, and counting.
    accredited to the U.N. Convention on the Rights of Persons with Disabilities member U.N. NGO group, Persons With Disabilities

  7. Laura,

    You have written so perfectly, what has happened to pain care in this country. I am so happy and relieved for you that today, you are pain-free. Thank you for sharing your important story, and for advocating for those of us who are dealing with terrible pain.

    I agree, that we are SADLY mistaken, if we think pain care for those with cancer or near death, are being treated appropriately for their pain. My beloved aunt passed away after two years in a nursing home. She was crippled with pain from severe osteoporosis, multiple vertebral fractures, severe TMJ, and lymphoma. THREE days before she passed away, she was whimpering in pain. I called her nurse to come bring her something for pain. I was blown away when the nurse told us that it WASN’T TIME for her medication! I spoke to her outside the room, and asked her if she was aware that my aunt would probably be dead within a week. She said, “I can giver her some TYLENOL, but that’s it!!! Meanwhile, this was a weekend nurse, and my aunt was SUPPOSED to be taken care of through HOSPICE a this point. She said she knew nothing about it. The next day, Hospice started given my aunt adequate doses of opioids.

    No one would say what happened, but I think orders hadn’t been written. All that nurse had to do was make a phone call. My aunt was BEGGING for relief. I am still horrified by what she went through in the weeks before her death. My mother experienced the same callous nurses attitudes the previous week. NO ONE CARED, is what it came down to. My aunt was a proud, private, sweet, kind woman. We never asked for a thing from anyone, her whole life. With the exception of the last TWO days of her life, she suffered in HORRIBLE pain for months. The nursing home she was at, was one of the best around. She paid out of pocket (& spent nearly every dime she had), and paid $13,000.00 a MONTH for this awful pain care. What a complete disgrace!

    Wake up, AMERICA. All kinds of people are suffering from lack of adequate pain care. Like Laura said, anyone else could be next!

  8. I developed Pseudotumor Cerebri Syndrome that required lumbar punctures to drain excess CSF, and after 14 of them, had lumbar shunts implanted to avoid permanent blindness.
    Opiod pain care enabled me to function during the 2 years it took for me to get my condition shunt resolved.
    After the horrible pain abated, I quickly reduced the opiod medications, and then stopped taking them. I never again had the desire to take Percocet, because the pain was gone.
    Having gone through that, I don’t believe that people in horrible pain become addicts. Like me, they only become dependent on the pain relief while the pain is there.
    I went back to college, worked full time, and started jogging regularly. My life was great, but then in 2007 I found a lump in the shower that was Breast Cancer. I underwent a Mastectomy TRAM flap and then had TAC Chemotherapy.
    I assumed that my doctors would be diligent about treating my pain during Cancer treatment, as they were many years before during the Pseudotumor Cerebri treatment. I thought wrong. The attitude and entire landscape of medical care had changed. I suffered terrible pain, day after day, for almost a year. My pain was dismissed by my doctors, and I was told that Yes, this would all hurt..that I should expect and accept it, and take OTC Motrin. I spoke louder and became insistent twice during it all, when the pain was unbearable, and was prescribed 2 bottles of pain pills with 30 pills each, during the entire year…with no refills of course.

    I recovered nicely, and think I’m going to be fine now. But I am very angry that I was forced to suffer by the medical community that is willing to accept that Cancer patients like me are in horrible pain. It just didn’t seem to bother anyone but me, my husband, and my 6 year old that I had to care for.
    I don’t need any pain medication now. If my shunt throbs or whatever, I stick a Lidocaine patch on, and go.
    But I know I am very lucky to be able to relax at this moment… pain free.
    I will never forget the despair I felt when I was in searing pain…muscles tensed up, tears falling, and each breath jerking in and out.
    I too have no more sympathy for the selfish addicts who want to get high, and couldn’t care less that they are causing thousands of real pain patients to suffer. I am disgusted by the sweeping legal measures that make no difference between actual pain patients and criminals, and I will stand up and fight for these paople who are in horrible pain.

    I may end up in pain again someday, but right now I’m not. I have a message for practitioners, lawmakers, and know-it-alls, who think they know best instead of suffering patients and their doctors who understand and care..”Wait until it happens to you, or your loved one. Then you will change your tune very quickly, but it will be too late.”
    To those in terrible pain, hold on. I understand that expecting people in agony to logically argue their points is like expecting someone on fire to hook up and unwind a garden hose. There are those of us who are not in pain that get it, and we are in this fight and on your side.

  9. Dr. Know,

    Thank you for your discussions, you have much more patients than me.
    Your also very knowledgeable about the treatment of chronic pain in a simple way.
    I try to respond to people like the Dave’s of the World but it gets old and I lose my patients with the know it all’s of the world that come out of the cracks of the earth to irritate people and get attention for themselves. Maybe I should have more patients and try to explain but I’ve tried this and I just cant seem to communicate with the Dave’s of the World. Dave tries hard but he is in above his head and doesn’t know it, that’s why I cant deal with people like the Dave’s of the World. Believe me I have had this same discussion many times over and after 20 plus years I see not point in writing it out yet again like you have done. And for that I commend you for your post and patients, you’re a very patient man and I need to practice patients or not post at all.

    Even after suffering from intractable pain for 24 years now I still get by okay on a very small amount of a certain time released pain medication. A lot of the ongoing chronic pain I have I found can be dealt with by walking 4 miles in the morning and taking hot showers and that gets me by the first part of the day. The second half of the day I’ve learned to meditate with breathing techniques this helped me deal with the stress that comes with the life of a chronic pain sufferer.
    So there are ways of dealing with chronic pain, even for the people that are worse off than me.
    Seems life is what we make of it, its up to the individual to get past the bad days and enjoy the good days.
    We’re on this earth for a very short period of time, so its best to do what works for you and leave it at that, keeping things short and simple is my way of dealing with the ongoing chronic pain. And after 24 years things aren’t half as bad as they where. It seems time heals things and I get a better understanding on how to get by.

    Thank you very much.
    Mark S. Barletta

  10. A decent portion of chronic pain patients can be pain free with the correct medicines. I was pain free on a low does of Lyrica. It was amazing to be pain free. However, the side effects soon proved to be horrendous, dangerous, and unmanageable. I wish my body would let me take it, but it won’t. I’m still looking for a good medicine to control my pain. Outpatient procedures and injections have not worked. My best bet would be a ketamine coma or infusion, but there are no doctors around who perform the ketamine infusions. My insurance would not cover ketamine infusions even if they were readily available. Also, ketamine comas are illegal in the united states , despite all of the evidence supporting it as an excellent treatment option.

  11. I usually disagree with Dave, but he is correct about ketamine infusions and ketamine treatments. They are probably one of the best treatments available for chronic pain. The success rate for pain reduction/relief from ketamine infusions/treatments is very high. Probably well over 80%. The only problem is that it is currently not an FDA approved treatment. Which is a shame. Ketamine infusions/treatments are also not covered by most if not all insurance companies.

  12. Dave, the chronic pain therapies/treatments that you have previously listed are not approved by the FDA and insurance companies. These therapies are not FDA approved and are not approved by most insurance companies: prolotherapy, homeopathy, neural therapy, gamma globulin mesotherapy, muscimol orthokine platelet rich plasma stem cell therapy, and ketamine infusions. Homeopathy is particularly troubling because there is absolutely no scientific or medical basis for it. Ketamine infusions are also difficult. I would try it or the ketamine coma if any doctors by me could actually do it. There are only a handful of doctors in the united states who can perform those procedures. Literally, the number of doctors in the united states who can perform ketamine treatments can be counted on one hand. So, availability is a problem for Ketamine infusions/treatments. While Ketamine infusions have been shown to be very effective, they can be dangerous. There is small, but very real, risk of severe irreparable psychological/neurological damage.

  13. I do believe that Dave has made some mistakes in his comments. I will systematically describe what I perceive to be mistakes. Well, here goes the list:

    1) Medicine has decided that pain is important. That is why we have so many different medicines and treatments for pain and chronic pain. There are probably less than ten doctors in America who think migraines should be treated with opioids. Opioid medicines are not dangerous when they are correctly prescribed and correctly taken. Opioids are more effective for some conditions and types of pain than others. There is no dispute in the scientific/medical community about that. That fact has been known for decades. Many conditions that cause pain cannot be cured. That is another fact that is accepted with no disputes by medical professionals including members of PROP.

    2) Not all pain patients use opioids. Dave, your comments make it seem as if all pain patients only use opioid pain medicines. Many pain patients do not. There are many conditions for which the use of opioid pain medicines is contraindicated. Most pain patients do have definitive and thorough diagnoses. Many times, there is no cure. Opioids are only one existing treatment and they can be a very effective treatment.

    3) It is an accepted fact of medicine and science that there are many conditions for which no known cure exists. Whether a person uses opioid pain medicines or not, does not change that fact. The use of opioid pain medicines does not prevent scientists from searching and trying to discover cures. There is plenty of evidence to support the long term use of opioids. Humans have been using opioids for thousands of years. There are a lot of case studies and historical evidence. There have been no long term official studies by the FDA because they are not required on any medicines. All medicines approved by the FDA only have to be tested for 12 weeks for approval. Companies may do longer trials if they wish, but they are unnecessary. If the FDA feels that 12 weeks is sufficient, then why should companies spend more time and money doing unnecessary additional trials?

    4) Hypoopiodemia is not a real condition or natural phenomenon. No medical authority or scientist recognizes it. It is fictitious. You did not even bother to describe this fictitious “condition.” Stringing together a bunch of scientific prefixes and suffixes does not mean you have created a real medical condition or natural phenomenon.

    5) Dave, who are you to determine what is good medical practice or not? You are clearly not a medical doctor or chronic pain patient. You have no right to criticize pain management doctors or patients if you are not in their position. Many pain patients have been treated successfully for pain. What credible source says otherwise? Many of my fellow pain patients have listed conditions for which opioids are required. Nobody has claimed that opioids are the only treatment for most conditions that cause chronic pain. Often, there are many medicines. However, many medicines tend to have horrific side effects. Anticonvulsants can be used for many forms of pain and all of them have terrible side effect profiles. Many patients cannot tolerate the side effects of medicines like those. Opioids are always used as a last resort in the treatment of chronic pain. What is significant about the fact that pain conditions may be treated with other non-opioid medicines? Nobody has ever said only opioids will work. Some people can only take opioids though because the side effects of other choices are unbearable

    6) David, where is the proof that so many of the painful conditions can be “cured?” Can you please prove this or at least post accepted and relevant experiments?. Currently, all medical doctors and scientists agree that there many painful conditions for which there is no cure for. Even the doctors at PROP agree with that. Discovering causes of painful conditions and treatments thereof takes decades if not centuries. Patients in pain do not have the time to wait around in excruciating pain for some scientist to find a “cure,” or “more effective treatment.”

    7) All medical treatments have potential side effects. All medications have potential side effects. That is just the nature of medicine. There is not much that can be done about it. Many alternatives to opioids are not safer. NSAIDS are not safer. Acetominophen is not safer. Gram for gram, acetaminophen is more dangerous than most opioids

    8) Not all medical conditions have cures. This is a fact. If you cannot cure your disease, then you should manage it to the best of your ability. It is basic medical protocol to determine a person’s medical condition and the cause of it. If a cause is found, then a doctor should determine if it can be “cured,” or not. Despite what some people think, many health professionals are competent and follow the basic protocol listed above. Doctors should find a cause, then diagnose a condition, and then find a cure if possible. If no cure is possible then move on to find treatments that can manage the condition. Many chronic pain diseases do not have cures. There is no known or FDA approved cure for fibromyalgia, CRPS, and AIDS. How does a doctor cure one of those diseases?

    9) I have spent over 7,000 hours studying pain and experiencing it. I have chronic pain. I have come to the exact opposite conclusion than Dave.

    10) Dave, where is a link to the article describing the legislation you have had members of congress sign? Or, are you referring to the PROP petition?

    11) Dave, can you please explain what “false consciousness,” is? You use that term frequently and nobody knows what it means.

    12) TMJD can be cured. Surgery can cure TMJD. It can also be easily treated with OTC remedies like a bite guard. People with TMJD do not need opioid pain medicines. Only patients with documented incurable diseases should use opioid pain medicines. While painful, thunderclap headaches do not count as chronic pain. Since thunderclap headaches do not last all day and night for months or years on end, they are not classified as chronic pain. Plus, thunderclap headaches can be treated with medicines taken as needed. Chronic pain is constant and does not respond well to medicines taken “as needed.”

    13) PROP is trying to limit the prescriptions and use of opioids without suggesting replacements or new methods. PROP desires to take away effective and safe medicines and replace it with nothing. Obviously, there is a reason why a majority of chronic pain patients and pain management doctors oppose PROP. If the PROP petition was such a great idea, then why did they submit it directly to the FDA without getting the opinions of various doctors? Why did PROP only talk to doctors who agree with them? If PROP was serious and genuine, then it should have sent the petition out to hundreds of doctors, including doctors who would oppose it, to get feedback. Why was the petition submitted secretly and without warning? Why did PROP not submit its petition for peer review? Peer review is essential for all sciences.

  14. Yes that was well put . I for one don’t want the federal government in charge of my moral compass . The evidence to them even having one is questionable these days. I don’t think it is acceptable for doctors or patients to be made to feel like they are doing something wrong by treating chronic pain with medication. It is a condition that is at least treatable that way when so many aren’t. Really maybe those efforts would be better utilized by focusing on the heroin addiction that is blossoming and the lack of treatment for it. Its not just in some dark corner now its in our back yards.

  15. Mark- I do suffer from chronic pain for 4 whole years – so much for your claim that people who advocate for real change know nothing about pain.

    Dave , I’ve been advocating for change and the suffering 23 long years before you even came along, seems all you do is make excuses and we all know what excuses are like.
    So speak to me when you become a Senior Sufferer ,till then babble on.
    The gold standard of pain care will always be controled with opiates.
    Thats the bottom line,

    Mark S. Barletta

  16. Thanks to everyone for their many comments on Mark’s column. We encourage civil discussions on both sides of this complex issue. We also encourage you to visit and post your comments on our new Facebook page. Perhaps some of this discussion can go there:

    Some of you may also find a recent story in the Los Angeles Times interesting:,0,2363903.htmlstory

  17. Doc forthe people- Studies show that approximately 15% of people with migraines and rheumatoid arthritis become disease free. People can and do overcome several painful conditions. Because pain care is poor and treatment algorithms for pain are underdeveloped that effective use of treatments is not routine. Moreover, former Senator Specter provided proof to members of Congress that NIH puts roadblocks in the way of research for cures for diseases. In the IOMs report on pain in 2011 they indicate they dont believe in cures for pain-and so of course since they dont believe in such they wont be looking for cures. And worse then that they have conditioned peple into believing theres no hope of them becoming pain free.

  18. Angelika- im glad im not a real doctor for they arent required to have any education in pain care in most states. Unfortunately, lawmakers wont listen to just peoples experience on the issue of access to opioids- so i recommend to advocates for access to opioids to put together a report that rigorously defends thee position. But ill remind you the pain experts like Dr Portenoy admitted recently they havent had much success in improving cancer pain care- so advocates have an uphill climb to improve pain care.

  19. Mark- i do suffer chronic pain for 4 years- so much for your claim that people who advocate for real change know nothing about pain. And Mark i listed some treatments for arachnoiditis- id like to see you list some treatments other then opioids and anticonvulsants, nsaids, yoga etc.
    To call for better treatments then opioids is more progressive then the treatment as usual that some are advocating. Its a terrible thing to see without a vision and those who care for the same old opioid treatments are not visionaries but overconformed to the sorry state of pain care.

  20. I resent that we pain patients are essentially being called liars by the anti-opioid brigade, as they refuse to believe our pain is as damaging as some of their “treatments”. Any competent doctor should know by now that chronic pain itself causes brain damage and CNS disruptions.

    Until people *with* chronic pain start calling for an end to opioid use, the restrictions are coming from people who are clearly *not* experts. Since pain cannot be visualized or quantified in any objective manner, people without pain cannot possibly understand what we’re dealing with.

    The biggest problem is that pain is invisible and unprovable. If the public could see us they would learn that we are more “like them” than like addicts. The public perception of pain patients is ridiculously negative and, by being almost forced to hide our own use, we are conveniently hiding a truth they need to see.

    How about a National Pain Day, where we all “come out” to our family, friends, co-workers (that’s where the real risk lies) and the general public? If people could see all the opioid users with chronic pain in their midst, they would sympathize more. It worked for gay people, perhaps it could for us as well.

    (I agree, let’s ignore the posts from “Dave” – with such careless writing its obvious he’s not a real doctor)

  21. I don’t comment on these articles so I end up having to justify the long list of medical alternative treatments I have tried. A true professional would NEVER profess to know so much about SO MANY diseases and conditions. I won’t waste my time trying to educate the ones that think they know what is best for me.

    Every person is different–each condition affects people differently–someone below said it best though, we ARE EXPERTS when it comes to OUR conditions. How condescending to imply that we just greedily keep our hands out for pills and have not bothered to try whatever is available for our condition. Pain medication is a LAST resort, when all other avenues/therapies have been tried. So to come here and imply that we just skipped those steps is ignorant.

    Clearly you have not actually spent time helping patients, or else you wouldn’t have so much available time to run around the web (I have seen your posts in LOTS of places) and post your THEORIES of how it is SUPPOSED TO WORK.

    We know how therapies are supposed to work. They didn’t for many of us. Why don’t you go try putting your beliefs into actual reality instead of insulting people that have already been through the worst of what life has to offer.

  22. We must have the Dave’s of the world to keep coming back trying to down opiates.
    It amazes me what people do to get recognized and the Dave’s of the world keep showing up like a bad penny.
    The Dave’s of the world are the know it all’s even when the Dave’s of the world never experienced a day of chronic pain.
    I’ve read through this line of discussions and the Dave’s of the world are like a thorn in the side of already suffering people.
    The Dave’s of the world get off on upsetting suffering people, then keep coming back to get recognized, its comical, pathetic and ignorant on the side of the Dave’s of the world that think their the experts on the treatment of chronic pain.
    Well Dave keep making a fool of yourself your doing a real good job of it.
    Some of you that keep putting down opiates, the one and only thing that gives most all people suffering in chronic and intractable some relief you have no idea what its like to open your eyes to yet another day of ongoing never ending chronic pain.
    So we need the Dave’s of the world so we can set them straight, its so much fun to read the replies from the Dave’s of the world, it keeps me knowing how misinformed most people are about the treatment of on going chronic pain.

    Thank you,
    Mark S. Barletta

  23. Concerned pharmacist- youre acalling the kettle black- arent the prompt promoters members of organization now under federal investigation for their role in promoting opioid use?Arent some pharmaceutical manufacturers of opioids under federal investigation for promoting opioid use? Its pharmaceutical companies that have something to lose if there is less use of opioids. As pain care in this country and other countries is poor i wouldnt brag about supporting medical education that doesnt include education in pain care. What did Dr Volkow say- on average doctors receive 7 hours of education in pain care and veterinarians receive 75 hours of education in pain care. Beyond biomedical remediation pharmocotherapy often does little to help people in pain. Does the name Dennis Turk mean anything to you-then as he indicates medications for pain arent effective. As Dr Landis indicated treatments for pain are “woefully inadequate. So much for harmaceutical companies and pain.

  24. Thanks Mark, Your article is very well written and to the point on opioid use, and the ones who are trying to take this away from patients that truly benefit from them. When I first came down with Arach, the pain was so unbearable, that I contacted The Exit Network, because I could not go on living in that pain. My Pain Doc, tried many procedures to help my pain. He also was very careful with my spine, since he was very knowledgeable about Arachnoiditis. I do praise his cautious thinking during this period. He had my best interest in mind. He knew that with more invasive procedures and surgeries would only cause my condition to worsen. This was 7 yrs ago, I have been on the same dose of medicine since, and take it responsibly. Why are we blamed for the opioid over doses. They never say what else these patients took with this medication. Which, in fact the woman who started PROP, her son died from an overdose of opioids with Cocaine in his system as well..Why do we have to suffer for these ones that take opioids for a buzz, or to end their lives??? It is totally unfair to us that suffer..If you have some kind of treatment in mind Dave for us, please speak up..I hate having to take these medications daily. My Daughter is 28, and lives with me. The only reason she even stays is because of my illness. I respect her for her kindness, but she wants to live her life. She is afraid if she leaves me, that I will not get the care or treatment I need. I did not ask for this disease. I had a great job working as a Quality Control Coordinator, and making great money. Depression set in because I had to quit my job. I was 46 when all this started. The best part of my life, and my pain has gotten better, only b/c of the opioids. If I didn’t or could not take these, I would not be here. I could not live in the horrific pain that Arachnoiditis gives us. Please like I said, tell me what kind of treatment do you have in mind DAVE>??? Great Info Terri Anderson!

  25. I agree with Mark Maginn that the individuals responsible for the current increase in overdose deaths. First, we need more concrete statistics of what constitutes an overdose death. Second, there are those who use the drugs recreationally and those who are truly addicted. The recreational users when they are “caught” generally get off by pleading addiction, in return for a clear legal record after they complete an addiction program. The recreational users should not be allowed to plea bargain down to some lesser charge. But then there is the rub…..there is no foolproof way to tell who is using appropriately, who is misusing and abusing for their own hedonistic pleasure, and those who are truly addicted.

    And the rush to persecute the docs who prescribe pain meds for those in chronic pain has lead to a dearth of doctors who will even see the pain sufferer. At the same time it provides fertile ground for the growth of the largely unregulated injection and implantation industry that has given us the epidemic of fungal inoculation. Keep in mind that the doctors who inject all too frequently refuse to follow up on their complications and treatment failures. Too many “pain specialists” do NOTHING but inject. And to make it worse, these injection technicians are the disease vectors without which there would be no fungal meningitis and death scenario! In a very real sense, these injection technicians masquerading as “doctors” serve the same vector role as the mosquito in West Nile Encephalitis. For those pain sufferers receiving injections today, opioids are a far less lethal alternative!

    Yes we do need better treatments and better understanding of pain, but it will not come from arguments of whether opioids or injections or something else is better. The real evolution of treatment will come only when medical scientists begin to view the nervous system as the complex electrical system that it is, applying concepts of liquid crystal technology, quantum mechanical electron transfer across the cell membrane (a far more realistic mode of charge transmission than ion transport) and transistor logic to the complex working of the nervous system. With such an approach more effective ways of neuromodulation will become available.

    In the meantime, chronic intractable pain is an incurable disease, just as diabetes is an incurable disease. Both need CHRONIC management. And for many pain sufferers, opioids are the only safe means of chronic management. For that isolated and statistically distinct and separate sub-group of the general population, opioids are statistically much safer than the alternative of injections with their proven risk of fungal inoculation, meningitis (and who knows what else) and death!!

  26. I followed Dave’s link and I am glad to see that Dr Andrew Kolodny has lived the live a doctor sold out to a drug company: Reckitt Benckiser that makes Suboxone. ( Dr. Kolodny has certainly given the same sales pitch that I have heard from other docs who were on the payroll for Reckitt Benckiser. It is also interesting that Kolodny states that there is no “black market” for Suboxone. There is a great deal of street market Suboxone flowing around. But we can probably chalk that up to the fact that the article was written in 2005, and Reckitt Benckiser was promoting the mantra then that “cautious prescribing” to the “right people” would prevent the street market. Of course, since Reckitt Benckiser holds a patent and supplies all the world’s Suboxone, they profit from the black market sales since they get their money regardless of the market on which it is sold.

    Now the “right people”, according to this article, are the ones who are working and presumably have good insurance. I know that the major insurer in my area paid premium rates to the docs who did prescribe Suboxone for these “right people.” At the same time, the “wrong people” were those on Medicare, which paid a far lower rate, and especially those on Medicaid who could not find any one to accept their insurance. Just see the article.

    So the real colors of PROP are that they are no different than any other doc that pushes their favorite drug. I wonder if they would include Suboxone on the list of drugs that can only be prescribed for 90 days. After all, there is no evidence that Suboxone works over the long term.

  27. Nancy I suggest if you wish to make a case for having full access to opioids then call for tamper resistant technologu,show that those against opioids are penny wise and pound foolish and that because of inderfunding of pain research there are no meaningful alternatives for some people. You could also say as there is no widely used objective test for pain thT consistent with the nrs for pain only people in pain ultimately know what effect opioids have. A major hurdle is the perception that opioids are prescribed in excess and at great financial cost to society. People are free to have any opinion of me they wish my record of helping people in pain is what it is

  28. Arach terri prolotherapy homeopathy neural therapy gamma globulin mesotherapy tapentedol muscimol orthokine platelet rich plasma stem cell therapy ketamine infusions to name a few id ask for neurotransmitter test and qsart also spenglersan test also habe you tried.manaka acupuncture with ion pump.

  29. Mark, Thank You for your continued work in speaking up for our cause, I was a member of the APF and appreiciated all of the hard work you folks did for us.

    Like Maggie I have EDS and it has caused me pain all of my life which is something I am glad that everyone else like the person “Paul” who commented earlier will never have to try to understand, if they had to endure our existance where instead of something like cancer that will keep you in pain for a limited time until it finally kills you had to live countless decades in pain that made you wish it would go ahead and kill you so you would not have to endure it everyday then they would understand.

    Paul, having been treated by multiple pain specialists we have discussed every type of modality imaginable and yet there has been nothing as cheap, effective, and predictable as the opiates that I must consume daily to hold the pain down to a more comfortable level so that I may provide for my family and maintain my civil service career.

    To look at me you would never know first that I am ill, and second that I am on doses of opiates that would have abusers stoned because if you truly are in pain and taking the proper amounts of opiates for your pain it gives you no elation, it just blocks some of the pain receptors so that you can go about a more regular life.

    The side effects are manageable and if there were truly something that could take their place I am sure like myself all of us that depend on the opiate class of medication would gladly change if the side effects were less, the possibility of abuse was reduced, etc., But anything that can be used for good can also be used for bad and it is not the fault of good doctors and good people who truly benefit from such items that should have to pay the price because of the bad medical professionals or bad people who take them recreationally.

    Another fallacy is that we become addicted to them and if you are taking them for the right reason you do not become addicted, I have a period over the last year where the treatments I was getting were actually effective in reducing my pain and when my pain reduced I had no desire for my opiates and stopped taking them altogether. I had always been afraid that I would become addicted because of all of the hype and yet it was as easy as stopping taking cough syrup once your cough goes away.

    I’ll tell you what, it seems to me more day by day that hormonal malfunctions play a key role in our disease and if we can isolate that we can duplicate it by giving normal people abnormal amounts of hormones to replicate the problems we face day to day how would you like to volunteer to let us bring you up to our level of pain and force you to live with it for a few decades and see if maybe you might be willing to change your stance on the subject?

    In the meantime I will keep working with my doctors to help find a cure, taking care of my civil responsibilities, and advocating that opiates be made available to those who truly need them and use them for the appropriate reasons.

  30. Sorry Mark, I did use some of your words, but I tried to say what most of these poor folks had to say. I was so angry. Like the one guy said, “Morphine is to a Pain sufferer, Like me, “AA”, as is insulin is to a diabetic.” Very well put, because, the end result is the same, if left without. One would argue, for sure, I’m an Rn. BUT, I have been there, done that, and by God, wear the Tshirts. “AA” is a Killer, no matter how you look at it…….I can’t say anymore. Hell, I wrote one letter and can’t find it,,,,,,,,,,,Thanks Mark,,,,,,,,,,,,,,,,,,,,,,,,,,,,H. Neeland

  31. I would like to propose an idea…. Let’s refrain from commenting to or about “dAve”, in favor of Mark’s great article. It is obvious now that there are some “other” health issues in play here, clouding the discussion, and this is too great an article to allow this jibberish to take over!

    I applaud Mark for his honesty & courage, and for standing up to the BULLIES who seek to limit access to opioids. It is understandable that family memebers who have lost loved ones to opioid abuse, seek an outlet for their pain. However, this cycle of “victims becoming perpetrators” needs to END. I can’t imagine that anyone would want their legacy to be about their death, or to have their death bring MORE pain to group of people who already suffer terribly. It is very sad to hear stories of those who have died from opioid addiction and overdose. It is equally devastating to here about the lives of chronic pain patients ending in suicide from untreated pain. This is especially so when treatment is a available and withheld. Not because it’s the wrong treatment for the patient, or that it doesn’t work, but because of the BIAS against opioids, and the FEAR of doctors losing licenses and livelihoods.

    I hear unbelievable stories from patients who are told over and over by doctors, “I can’t treat your pain any longer” or ” our practice no longer treats chronic pain patients” or “I’ll lose my license if I……”. What are people supposed to do? WHO is going to stand up for these people? I’m not talking about patients who abuse their meds, or break contracts, or divert medication. These are patients on stable doses of opioids, who have gotten their lives back and their pain relieved. THESE are the people who will lose jobs, the ability to care for their families, the ability to participate in LIFE! Because a group of doctors have decided that opioids are bad, and should no longer be used for chronic pain……people are supposed to just STOP taking them? it’s not just facing horrendous withdrawal….it’s facing LIFE in constant, debilitating, untreated pain! So, these same doctors who treated these patients (successfully) with opioids, are now abandoning them? Sorry, we “THINK” we were wrong. We don’t have EVIDENCE, but we think we were wrong, so back you go….INTO HELL! Back to bed, back to the torture of life in severe pain? Good luck to you, but don’t call me? THIS is the reality now, for many patients with incurable pain conditions. Why? Because some people swallowed 20 pills at once, washed it down with a bottle of wine, and then took 3 Valium….

  32. Arach terri The pain specialists are focused on their own interests. They see without a vision they dont have what ot takes to move pain care forward. Even dr portenoy recently admitted that despite 20 uears of efforts cancer pain management hasnt made much progress. Its up to people to get medicine to do a much better job in helping people with pain and frankly neither medicine npr government cares much for people in pain as they see people in pain as burdensome complainers. People in pain need to work together and have a real vision and energeyic plan to move pain care forward and failing that pain care will not improve anytime soon.

  33. Dave, and ALL Pain Physicians:

    I have adhesive arachnoiditis following a brutal back surgery at the Spine Institute in Loveland Colorado:
    Here are the treatment options I have tried without success:

    1. Epidural Steroid Injections
    2. Lidocaine Infusion
    3. High Doses of Vitamin C/Magnesium Infusion from Alternative Pain Doctor
    4. Anti-Inflammatory Diets
    5. Multiple compounded pain cremes to rub in my back that included Lidocaine, MSM, Baclofen, and other compounds
    6. Other non-opioid prescriptions drugs for pain: Lyrica, Gabapentin, Cymbalta, Amitriptyline, Nortriptyline & Anticonvulsants
    7. Acupuncture
    8. Physical therapy
    9. Massage
    10. Hot Packs/Cold Packs
    11. Drinking
    12. Not drinking

    The most effective treatment for my pain that enables me to function, as best I can, are Opioids – and I have been using them responsibly for over four years! At least my brain still works, but my back sure as hell doesn’t – thanks to the surgical option! I should have stuck with Opioids. I would have been a lot better off.

    Am I missing an effective option Dave? I would love to know how to treat this pain.

  34. Terri I dont dispute peoples accounts of their experience of pain. I do dispute their claims that they have tried everything or that ppiods are the best or only treatment. As I have gotten 20 legislators in nys to sign on to legislation to require doctors to have educatipn in pain care I believe I am doing more to help people in pain then ventilatingit is the moral and mental laziness of medicone thay is largely responsible for pain cares failure. I dont believe pain specialists care as much as they claim to care fpr peolple in pain and frankly beyond Bonicas Pain Management they dont know much about pain. There ate those who will continue to prpmote the.ise of opioids I will continue to advocate for treatments that go beyond biomedical remediation

  35. Dave, with all due respect, ‘dissing’ the testimony does not further your argument. It does make it almost impossible to hear what you are saying. People with pain ARE experts on their own experience. Your comments are dismissive. On the other hand, you make some very good points. Not enough research is being conducted, we don’t use all of the information available to us, and real inquiry is almost non existent because it is underfunded. We also have a poorly conceptualized construct that we call pain, which is clearly not a one size fits all problem. We do not need polarization. We all have a stake in this solution that is better served by working together respectfully and listening to ALL of the testimony on this subject we can find and using the processes of factor development to figure out this wicked problem. We have a lot of work to do TOGETHER.

  36. Rebecca its regrettable that medicine isnt betyer informed about what treatments can be used for your condition but to assume that opioids os the only.treatment for your condition is not based on fact for it is based on the ignorance of your provders

  37. The absence of studies related to this issue is an important issue to address. As a sufferer of adhesive arachnoiditis, I rely on opioids over other drugs that turn me into a zombie (Lyrica, for example). Unfortunately patients such as me have been ignored by medical scientists. Since many of us who suffer from arachnoiditis are the result of medical interventions, we are concerned that the PROP petition would further erode the use of medical management of chronic pain in favor of the growing use of epidural steroid injections. We fear this increased use of more harmful interventions is going to lead to countless cases of arachnoiditis or its medical relatives.

    I agree with PROP in that I do not want to see opioids handed out like candy. However, long term chronic pain patients are the ones that will suffer if physicians become fearful of prescribing for our patient community. One issue that I have not seen addressed is the increase in opioid deaths for those that have sleep apnea. This is a huge factor. Has anyone considered this? Maybe this is another factor that should be fully investigated before proceeding without all the facts.

    I also suggest that physicians and other interested parties do their homework on some of these painful conditions that make sufferers question their very existence. These cruel conditions include adhesive arachnoiditis, chemical meningitis and more recently, fungal meningitis. I’ve had short term chronic pain in the past and “toughed it out” without opioids. However, this intractable pain condition that came as a result of failed spinal procedures tops them all. Unless you experience a level of pain that penetrates your soul, then your qualifications related to this subject may be coming up short.

    I have consulted with some of the best physicians and pain specialists in the world in regards to my intractable pain condition. They confess to having minimal understanding of the complexity of this condition – let alone how to treat the pain that it inflicts on its victims. If the “experts” cannot fully understand the affects of scarring within the subarachnoid space, and the disrupted flow dynamics in the CSF system, which causes bizarre and horrific sensations, then I don’t think many “pain specialists” are qualified to comment intelligently on this subject.

    Count me in Rebecca Roberts!

  38. Concerned pharmacist youre calling the kettle black for some of the organizations prompt belongs to as well as some pharmaveutical companies are under federal investogation for promoting opioid use. Lets face the facts opioids are suboptimal and dangerous treatments one woul think in the postgenomic era pharmaceutical companies could do better then biomedical remediation

  39. Nancy you conflate your limited knowledge and experience as the way it is in pain care. Clearly you and the doctors you saw know a small fractipn of what can be used to help people in pain.anchorong niases and experoential biases are common in pain care. Bit if you and maginn wish yo convince others to allow doctors to use opioids ad libitum youll need to convonce government of theor efficacy and safety and government now sees opioids as too costly and too dangerous. I suggest those in favor of opioods the prompt suppprters recognize they have failed to do enough research on the cost effectiveness of opioids and now with the new opioid regulations they have a tall order to prove their case

  40. Walt I disagre neural therapy or neural prolotherapy and even orthokine for arachnoiditis but tere are several more. Ots unfortunatr that the occupational interests of pain specialists have served to fool people into believing there are few options for people in pain. They dont want you to know about treatme
    nts that they dont use.

  41. This is the last I will waste my time commenting to “Dave” the pain expert! For you to imply that wasting ten years of my life, using EVERY other pain relief method made available to me by doctors (& many weren’t mentioned….like Biologics, TNF inhibitors, Methotrexate…..) wasn’t enough? Ten years of trying alternatives, not enough for you, heh? Should it have been twenty? Having spent those years trying alternative treatments DOES make me an expert on MY pain. Pain that has been drastically reduced and relieved by the use of opioids. I think I’ll defer to my doctors for their expertise, and listen to my Geneticist (= really smart doctor who is an expert in genetic conditions!), who tell me there is NO CURE for EDS pain! The cure is in managing it! If you have spent 7000 hours studying pain (sad for someone who has been cured from minor aches and pains & didn’t need opioids! ) then you should know that there is NO scientific evidence for any of PROP’s recommendations. Your lack of compassion for the suffering of those who have serious pain, and what they have endured trying to relieve it, just shows how naive you are. What about those who have been permanently disabled by doctors who pushed their dangerous “interventional agenda” of anti-opioid at ALL costs, lining their pockets with money, while causing adhesive arachnoidosis in people desperate for relief. Did THEY not try hard enough? Keep studying up, Dave! You have a LONG, LONG way to go….

    THANK YOU, Concerned Pharmacist!

  42. It is terrifying for people living in pain due to non-curable medical conditions or lie changing traumatic injury and use opioid therapy to manage (not eliminate) their pain to have petitions like PROP appear. Morphine is to me as insulin is to a diabetic.
    Please take a few minutes to let the FDA that you oppose PROP petition by visiting
    Another good web site for chronic pain patients is

  43. For those that keep criticizing the drug companies (“Concerned MD”, et. al.) and trying to put blame on medical doctors and pharmacists, consider the following.

    1. The pharmaceutical Industry pays for many grants and research to almost all academic medical schools and pharmacy schools.
    2. Psychiatrists went to medical school before they specialized in psychiatry and as a result partook and benefited in their generosity during training…you are a hypocrite to say otherwise now just because it’s convenient and serves your agenda.
    2. Medical schools routinely request support from the pharmaceutical industry to fund their weekly grand rounds.
    3. True, PROP members do not have a conflict of being on speakers bureaus for opioid manufacturers. This is because it makes no sense for these companies to seek out non-pain experts to lecture on their products and/or to compare their products to those that are already available. Instead, psychiatrists most probably speak about drugs that are used specifically for psychotherapeutic purposes. Gee, what happens if a PROP member lectures on Risperidone to treat the symptoms of schizophrenia, but the same company also manufactures Duragesic (fentanyl). Oops?
    4. If you sincerely believe that PROP members have no conflicts, read The Bitter Pill at

  44. Thank you Mark! This is so much how I feel about it . . .

  45. In response to Dave’s request to name one condition that requires opioids to successfully treat. There is one that comes to mind and it is also getting much attention in the media. Adhesive Arachnoiditis. There is no effective treatment for it, little or no research being done to find a cure, Opioids are the only thing that truly help bring the pain level down to a level that provides some small restoration of quality of life and prevents suicide. I would think that many short sided doctors would say that epidural steroids and Spinal cord stimulation are successful in treating Arachnoiditis, but sadly these are examples of procedures that although intended to treat the pain of arachnoiditis actually have been known to cause it, or make it worse. Adhesive Arachnoiditis at one point of time was truly a rare and orphan disease, but in today’s environment is a +90% iatrogenic disease and its pain has been compared to end stage cancer pain without the benefit of death. All this debate over the safe use of opioid medications is a repeat of history that this country has failed to recognize as history repeating itself. The Temperance movement that brought about Prohibition is simply being carried on by Doctors and other health care professionals like Prop And Mary Bono Mack.I would challenge any of these people to acquire Adhesive Arachnoiditis and see if they can survive the pain without relying on Opioid pain medicine. Unless you have this type of pain then you really have no business telling us that we don’t really benefit form taking opioids. People opposed to treatment using opioids show there is a great lack of compassion. it is this lack of compassion coupled with financial greed that cause conditions like Adhesive Arachnoiditis.

  46. Interesting discussion here. While I do not suffer from pain I know those that do. I am a big proponent of finding foods that help with various ailments and alternative medicines/therapies. However, I don’t understand Dave’s point of view. For those who literally can not live without pain medication why would anyone limit their access? We can continue to make progress on discovering “cures” . But to say we can not make progress until we eliminate pain med access seems not only senseless but cruel.

  47. Wow, you Dave, have no idea what I have to live with daily.. I have Arachnoiditis, it is a iatrogenic, intractable, chronic pain disease. I have no other options but opioids. I trusted my Doctor to try and take care of my pain of DDD,(degenerative disc disease) with a series of 3 ESI’s. Guess what, it didn’t help my pain and gave me a horrific disease, I would not wish on my enemies..I have had this disease for 7 yrs now, had to quit my job and go on SSDI. Now I live in poverty b/c of a alternative treatment for my pain! After I was diagnosed, I tried many alternative pain treatments. With the final one being a Pain pump. This did not work either because I have no spinal fluid flow in my Lumbar Spine, this is from the Arachnoiditis. The scar tissue growing inside my spinal cord has it totally blocked. The Pain Specialist I was seeing at the time, sent me to the Spine Institute in Indianapolis, Indiana. This was to see if I was eligible for surgery, the Doctor said then, that no one is to touch my back ever again. I have no other options but opioids. What and how am I going to live daily without these medicines? They are the only thing that makes me get out of bed, go shopping, run errands. With this my time is limited to 2 hours a day, because my pain increases as the day goes on. Any procedures or surgeries would only cause Arachnoiditis to progress. I will be in a wheelchair one day, but till then I have no choice on my pain treatments. There is NO cure, NO treatment for this disease. It is the ugly epidemic that Doctors have been hiding for years.
    With the recent outbreak of Meningitis, our disease is finally in the news. These innocent people given these ESI’s for their pain, has turned their whole lives upside down. Now, there are reports that some of these patients are being diagnosed with Arachnoiditis. Their journey is only starting with this lifetime disease. I pray that they can live through this pain, and be productive as they can be with Opioids. It is very sad to see this happening to these innocent victims. I was once an innocent victim myself. All I can say is everyone needs to do their research before doing any kind of alternative pain treatments. PROP should be concerned about taking away Pain Patients lives by taking away their opioids.

  48. Nancy- Thunderclap headaches and tmj are supposed to be amongst the most painful conditions. I dont doubt the severity of pain you experience but i do doubt that only opioids can be of help for your condition or the most effective. Ive heard it before -that a person has tried everyhting for pain- ive spent 7000 hours studying pain and still am learning of new treatments. No one could live long enough to try all treatments for pain.
    PROP doesnt eliminate the use of opioids-and i have called for better treatments then opioids- and dont understand why youd be against that
    And frankly Nancy having a painful condition and having experienced a number of treatments doesnt make you an expert- to call me naive when i have done more then you to improve pain care is rich. Youll need to marshall a lot of evidence in addition to an emotional plea if you wish to change governments mind about the opioid problem. Your experience and opinion will not be enough to convince legislators-youll need to show you know somethings about pain care that doctors dont.
    I fought against the ISTOP legislation in NYS as it will limit accesss to pain medications-but the Governor changed the legislation a day before the vote-and so i didnt have enough time to change legislators minds.
    Nonetheless, already i have legislators willing to draft new legislation on the issue.

  49. Dave is speaking from the convenient perspective of one who has never had their life upended by severe, unrelenting pain. To say that there is “no painful condition that can’t be treated with alternatives to opioids” is unbelievably ignorant and naive. I spent (WASTED) ten years of my LIFE trying to find alternatives to opioids for my intractable pain, caused by a GENETIC connective tissue disorder, called Ehlers-Danlos Syndrome. I tried too many treatments to name here, with NO lasting or meaningful relief. You have absolutely NO idea how much torture some of us have endured trying to find “alternatives to opioids”. It is laughable to read that opioids could cause “endocrine disorders”, as if they can’t be treated! They are a mere inconvenience to me…and something my DOCTOR treats. Without longterm opioid treatment, I wouldn’t function, bath, dress, walk, have relationships, or eat. How DARE people who haven’t lived with the torture of daily, harrowing, life-stealing, incurable pain, tell me that I should use “alternatives” to opioids for pain control. I’m not taking about headaches or a little OA, I’m referring to joints ripping out of sockets, spine dislocations that cause spinal cord compression, displaced BONES, to name a few! Get off your high horse, Dave, and get your facts straight. “legitimate” chronic pain patients, who suffer from serious, chronic, incurable, pain conditions….through NO fault of their own, have had their LIVES RESTORED by the use of these medicines. We shouldn’t have the only treatment that has been SAFE and EFFECTIVE for us taken away because OTHER people suffer from the disease of addiction, and shouldn’t be taking our medications! As someone else mentioned, we are talking about two different populations of people here. Yes… There is some overlap, but addiction is a part of every population. Life is TOO short to spend TEN years in BED, because doctors are afraid to use opioids. This discussion wouldn’t even be happening if people like Dave had to spend an HOUR feeling the kid of pain that only opioids treat. I wouldn’t wish that on anyone, but like Mark, I’m starting to lose my patience….

  50. Susan- Its because i dont want people to suffer pain that i advocate for treatments that do more then just “treat” pain but have the potential to cure pain. Opioids do not cure chronic pain-they can prevent acute pain from becoming chronic by preventing “windup”- but often they dont do that,either- due to the bias in medicine that pain should be treated, managed and not cured. Look at the IOM 2011 report on pain-they label people in pain”catastrophizers” and they say they dont belive in cures for pain- yet you belive there your friend when they provide you an opioid without talk of what may free you of your disease and the pain that goes with it. I too suffered for 4 years with a painful condition and found a cure- i do know what its like to go crazy with pain and what many go thru- that is why i have spent over 7000 hours studying pain. That is why i have gotten 20 lewgislators to sign onto legislation to require doctors to have education in pain care. And everyone of my legislators from Senator Schumer, Senator Gillibran, Congressman Engel, State Senator Klein, Assemblyman Dinowitz- have all signed on to such legislatio. So i find it rich when those who have been subject to the “false consciousness” and the pharmakon that opioids are good for pain and that painful conditions cant be cured that i am criticized for callling for better pain care instead of the same old suboptimal pain care as usual.

  51. Erika- there is a lack of research on the long term effects of opioids and more then a few reports linking opioids to qt sybndrome, endocrine disorders, and even cancer. Books like The Body Broken point to the negative mental consequences that can and often do occur when on opioids. And i have seen too many people with osteoarthritis and migraines being trated with percocet and nothing else.There is no painful condition that cannot be treated with alternatives to opioids and most alternatives are safer. But the issue to me is not just one of safety but one of progress and to advocate for continued use of opioids for pain is not a vote for progress in pain care. And the result of advocating for opioid use will discourage progress in pain care.

  52. Dave,
    I wish you could live in my body for one day. I have a genetic condition called Ehlers-Danlos Syndrome. I was just diagnosed after 15 years of daily, excrutiating pain. Thank God my spine began to fall apart two years ago, and a doctor finally believed I was in real pain. The opiates I was prescribed have allowed me to do things without pain; things you probably do every day without having to plan how much “pain free capital” you’ll have left to maybe do something you enjoy–something like hobbling to the car to go visit a friend, rather than curled up in the fetal position wishing you had the courage to end it all. Things like showering, preparing food, laundry, getting dressed.

    Yes, I’m dependent on my medication. I depend on it to allow me to do things that others take for granted. I wonder what alternatives you have in mind?

  53. Mark Maginn sees “an assault on pain patients” caused by a vast conspiracy with the goal of making “these medicines as rare as possible for people living with pain.” What Mr. Maginn doesn’t acknowledge is that these groups are responding to the harm caused to BOTH pain patients and the general public by over-prescribing of opioids.

    The epidemic of addiction and death was caused in large part by drug companies and the opioid advocacy pain groups they funded, like the American Pain Foundation (APF). Mr. Maginn knows this because he worked for APF. So, if pharmacies no longer want to stock opioids in the midst of an epidemic of opioid addiction, Mr. Maginn should thank his friends at Purdue Pharma and APF for causing this mess.

    This notion that “legitamate pain patients” are distinct from people being harmed by opioid use is false. While it’s true that many people take opioids for kicks, most of the people dying from ODs have the disease of addiction. And many of them developed the disease through medical use.

  54. Erika- doesnt sound like your focus is cures-and opioids, of course, are dangerous and often ineffective treatments that foster a dependency, indefinately. After over 4000 years of use there is inadequate research on long term use of opioids- reflecting medicines neglect on the issue of opioids. If opioids were really necessary medicine would have postulated hypoopiodemia as a medical condition-and of course they have not done so. The closest thing is reward deficiency syndrome. Opioids are often provided not out of medical necessity, but convenience and often is poor practice. The reason there is lack of success in pain treatment is lack of caring in medicine and government. In addition, the medical model is not dynamic enough, at this time to come up with good treatment plans for addressing pain.
    Name me one condition for which opioids are the only treatment available. Just one. You proponents of opiods, are in essence not calling for progress- but the same old let the person in pain eat opioids rather then have the benefit of a dynamic treatment plan that gets to the causes of pain and attempts to cure the painful condition. I am trying to set people free from the iron cage of treat the painful symptoms-and that is what opioids are all about- treat the symptom indefinately without an effort to cure.

  55. There is a segment of patients with chronic pain that have tried EVERYTHING that is on or comes on the market just to feel somewhat human. Also we are looking for ways to get the heck off the narcotic pain medications. Wellbutrin caused psychotic changes in my brain. I saw things, I heard things and it was terrifying. The SSRI/SSNI anti-depressants caused me to clench my muscles, especially my jaws, so hard that I broke teeth. I had to keep a washcloth between my teeth at all times. Unfortunately, I always end up back with Neurontin and pain pills for my myriad of conditions. It doesn’t take away my pain but sometimes a layer or two gets pulled off. Without meds, I cannot get out of bed, hold a coffee cup, get dressed, walk to the bathroom. Narcotics have saved my sanity….perhaps my life. Do I want to be on them? Heck no! I want to be the woman I was when I was still able to work, when I never walked….I always ran from place to place. I got out of bed at 4:30 a.m. to do my exercises. I am 55 years old going on 90 today. But that’s OK. It’s my life and many have it worse than I. This pain itself will not kill me. All I ask is that the medical community understand that for some of us the legally prescribed amount of narcotic pain medications are the difference between being a member of the community and…..well, I don’t want to even think about the alternative.

  56. Dave, you are extremely misguided. Opioids are effective for chronic pain. No, they are not a cure. They are one of the most effective components of a palliative care program. Chronic pain arises from a multitude of situations and not every cause of chronic pain has a “cure.” That is why palliative care is so important. It is also blatantly untrue that opioids “blind” patients from seeking other forms of pain relief. (Really, where do you get this stuff?) Many patients on opioids also participate in modalities such as physical therapy, chiropractic, massage, yoga, support groups, and some have tried surgeries and other classes of medications to address their pain issues. Further, Dave, you do not understand PROP’s proposal. Please go study the issues.

  57. Mark, your patience with abusers has lasted a lot longer than mine. It is just incredible that illegal and dangerous behavior is being used as an excuse to curtail legal and relatively safe behavior. It makes no sense to hassle legitimate patients as a proxy to addressing the illegal behavior of an entirely different subset of people.

  58. The assault on pain patients began a long time ago when medicine decided that pain wasnt important. To blame PROP promoters as the enemy of pain patients is misguided. PROP wants changes in pain care- while most doctors wish to see the sorry state of affairs in pain care remain unchanged. Its ashame that people believe they should get opioids for arthritis or migraine- for that is poor practise- opioids are dangerous and ineffective medications- why continue to promote them at the expense of finding more effective and safer treatment for pain? Lets face it opioids are not used to cure pain but to foster a dependency and blind the person into believing there are no other alternatives. Wouldnt pain advocates better serve people in pain by calling for better treatments then opioids and better use of existing treatments? As with other pain medicinesopioids are used indiscrimately without the benefit of a thorough diagnosis- Modern medicine and pharmaceutical companies are focused on fostering a dependency on inadequate treatments-and that is why they continue to promote opioids.