My Story: What About Our Rights?

My Story: What About Our Rights?

By Douglas Marsh

I believe that one of the worst things that our wonderful government has done is target a group like the chronic pain community. For the most part, we are a group of people who at one time in our lives were active and very productive members of society, then one day our lives as we knew them all ended. Now we sit at home blogging and talking on social media about all the injustices we are experiencing. Their outright blatant attacks against all of us and the doctors who treat us with opiates have created an entire demographic of people who are been openly and publicly discriminated against by pharmacies, doctors, nurses, public interest groups, politicians, government agencies and the national news media. This has all been an unforgivable violation of our human and civil rights by our government and the news networks media icons like Anderson Cooper.

It’s our duty as the oppressed to stand up for ourselves and make our voices heard. Medgar Evers, Malcolm X and Dr. Martin Luther King opened the door for everyone’s civil rights and then others like Harvey Milk extended the fight for other groups. Every single one of these people fought against not only the odds, but also public opinion.

The Civil Rights movement of the late 50s through the mid to late 60s ended up becoming the Rainbow Coalition under the leadership of Reverend Jesse Jackson. This group became a very important player in the nation’s elections.

These are just a couple of examples how an oppressed and discriminated against group can become very important in the election process. This is why and how we should make our points to the elected officials and those campaigning for their offices.

The day will come when the Chronic Pain Community will be a deciding factor in the election process of State and Federal government officials. It has become our responsibility to create our own future by not just casting our votes, but by becoming a force to be reckoned with. I am putting a call out to all my pain riddled brothers and sisters to contact every candidate running for offices in your area, both new and incumbents. Ask them the questions that are important to us as a community like the legalization of Marijuana and the fair treatment and humane treatment of pain suffers with the use of opiates. Find out and share the answers to these questions on social media and the National Pain Report to let our fellow pain suffers know who should be our candidates.

Believe it or not, a day will come when our actions and influence will become huge in determining who will be elected. A day will come when our opinions will be asked on the National News on who the Chronic Pain Community is going to endorse in elections. Finally, the day will come when real funds are given for proper research and development of safe drugs and therapies for treating and eradicating Chronic and Disabling pain.

This movement could decide a new mindset and also change a lot of ways that business in the United States is conducted, just as the Rainbow Movement did with AIDS research and the Civil Rights Movement did with corprate hiring and voting rights among minorities. Just maybe we could change work place safety procedures to avoid accidents and injuries along with more in-depth medical training to further avoid errors and failed medical procedures.

I am truly sorry to make this a history lesson, and I do know that I can be very long winded at times. But I honestly believe that if all this is done in the same ways that these other movements were done, our cause just may open the nation’s eyes to the discrimination that every single one of us has experienced.

Douglas Marsh is a 50 years old pain patient who lives in southwest Louisiana. He and his wife Pam recently celebrated their 11th anniversary. He just joined the US Pain Foundation and is looking to become a much active advocate for pain patients.

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Authored by: Douglas Marsh

There are 36 comments for this article
  1. Danny at 8:46 pm

    Judy A Jaeger, I completely understand where you’re coming from with the comment you made. And, it’s true: Many of us will never see things change. But, I have a small little story that might give you some food for thought.

    I was electrocuted in 1991. Electrocuted as in dead. But for the actions of my Dad, I wouldn’t be here now. A few weeks after the accident, I began to suffer with unbelievably severe head pain. Thus began my “new” life. The pain was relentless. I lost my job as a pharmaceutical sales representative for a very large company (yes, I know – “big, bad Pharma!) My life came to a complete stop. Saw many neurologists, had many MRIs and other tests. Nothing worked. Being that this was before use of the Internet was a common occurrence, we couldn’t find where to go. That is, until a family friend, knowing about the accident and my suffering, called my Mom and told her about a small news “blurb” in the local Georgia newspaper. It said that the University of Chicago had begun conducting a study of electric shock & lightning strike victims. This occurred in October of 1993.

    My brother hit the phone and, eventually, was able to enroll me into their research program. I was the 57th person to go through the study. (Eventually, several thousand people participated.) I was to be at the U. of Chicago hospital on Monday, January 9th at 8:00 am. I spent Monday through Saturday meeting with, and being tested by, a variety of doctors from different specialties. I took tests, had MRIs, CAT scans and others I don’t recall. When the last test was completed on Saturday morning, I was told that I would receive their conclusions within 3-4 weeks. I went there hoping to be “cured”, or at least learning what to do to stop the pain. When their conclusion arrived, I was crushed. They basically said that they could see the damage the electricity had done to my brain, but there was no conclusive evidence to explain my pain. “It could end tomorrow, or never end” is a direct quote. That’s the day I knew that I would have this horrible pain for the rest of my life. And I accepted it.

    But, the information I wanted to share with you, Judy, is this: Every time I search the Internet for news on electric shock and/or new treatments for severe pain, I run across articles about household electric shock and the long-term effects, EVERY ARTICLE is either written by or using footnotes from the study I went through. It turns out that this study is the largest and most focused on electric shock than any other in the world. While they couldn’t help me when I was there, they’ve learned a great deal about electrical injury and make many recommendations on how these patients should be treated within the first two weeks of the injury.

    My point is that, while we may not benefit from pain sufferers organizing and speaking up, any young children you may know, whether it’s you own kids, or nieces/nephews, or kids of your friends, THEY might benefit from out work that’s starting now. The study I went through didn’t help me at all. Luckily for me, my parents were able to pay for the trip and study. (I paid them back when my lawsuit was settled.) But because of that study, so much more information can help those who have accidents similar to mine. If treated early enough after being electrocuted, there’s a lot of help that might prevent at least some of the pain I experience. So, if we can help others in the future, I say “That’s awesome!” The posts by Matt and Christine (?) were awesome! We all need to do whatever we can to get organized and start speaking out. Whether it helps now or later, it’ll be worth it.

  2. Judy A Jaeger at 6:26 pm

    Interesting article, but I’m pretty sure “that day”…..when chronic pain patients voices are heard, will not come in my lifetime.

    The FDA, CDC, DEA, Big Pharm, Addiction Specialists, Our Insurance Companies, Many Health Care Facilities, Main Stream Media, Our Government, and most of our politicians have declared not a war on drugs, but a war on chronic pain sufferers.

  3. Matt at 1:15 pm

    To: Christine Taylor,

    The secret to the success of major historical perceptions of defined minorities has always come from the squeaky wheel concept. Whether from staged marches on the Washington Mall to stop a ridiculous war, or the many that Dr. King staged throughout the south to bring attention to civil rights, they always began as small cores of zealot convicted groups to change the perception of the majority. THEY WERE ORGANIZED.

    We as chronic pain patients many not constitute a defined minority by numbers, but it is undeniable that this is a civil rights issue with the CDC and media responsible for propagating intentional discrimination directed at one specific group….All Of Us!

    Christine, your post was a fantastic slap of reality. Bringing to our attention the Americans with Disabilities Act may at the very least remind us that it defines us as An individual with a disability is a person who:

    Has a physical or mental impairment that substantially limits one or more major life activities;
    Has a record of such an impairment; or
    Is regarded as having such an impairment.

    Or that our Bill of Rights to the Constitution of the United States affords us perfection under the 14th amendment (Civil Rights ) under section 1:

    All persons born or naturalized in the United States and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.

    We are a minority with regard to the current state of pervasive lies.
    We are afforded the same protections under the law as any other minority group.
    We may be weak in body, but strong in numbers, at least 80 million strong.

    I guess I would say that we may be disheartened by the present political climate, but we have the Law of the Land on our side.

    Thank you Christine for opening the door, now let’s walk through it.

  4. Christine Taylor at 9:20 pm

    Richard Oberg MD,

    I read the article and sadly I am betting many chronic pain sufferers who had pain control but are no longer able to get it, might resort to a dealer. I read a few articles about how in Vancouver many people who are addicted to heroin are being given fentanyl as it is easier to get. Heroin was pretty easy to get as it was. Many of those who think they are injecting heroin instead inject fentanyl and die as a result as that drug is more potent. They have now been handing out narcan kits and addicts have been functioning as First Responders . and saving lives. The same thing might end up happening in States that do not adequately treat pain patients. All one needs to do is hang around near an emergency department and eventually they will see someone jumpy who knows how to connect them to a dealer. Where they once had a doctor prescribing specific doses safely they will now use a dealers drug and likely end up overdosing. If they do not go that route some will die by suicide and others will deteriorate.

  5. Christine Taylor at 10:28 pm

    Thanks Matt,

    I hope it helps someone. I live in fear of my doctor retiring because I had no quality of life for over 3 years because of ignorance. I have decided that if I end up ever having to get a new doctor and am denied medication I will file a complaint.

    As for anyone else who may be thinking of going the lawyer route, keep a diary of the unnecessary suffering along with moments missed with your family and friends. Keep a record of how much the pain is impacting your life. Financially, emotionally and physically. Also keep record of the pain your family endures seeing you that way and how they feel when you are unable to partake in activities. One never knows, chronic pain sufferers may have a case.

  6. Matt at 9:09 pm

    To: Christine Taylor,

    GREAT POST!

    You may have the found the linchpin or chink in their armor.

    AMERICANS WITH DISABILITIES ACT OF 1990, AMENDED 2008 may be the exact instrument necessary to defeat the growing threat that absorbs every moment of our lives.

    Consider for a moment a legal argument; The CDC as an employer (guidelines, not the law) imposing it’s unconstitutional authority on a protected class of citizens.

    Food for thought. Great post Christine!! Any Lincoln Lawyers out there?

  7. Hayden Hamby Jr. at 5:34 pm

    I have been a chronic pain patient for 23 years after developing back problems which eventually required two surgeries. I opted for the surgeries to help me live either pain free or reduced pain. I was told by the surgeon that the first surgery would reduce my pain as much as 70 percent. The problem with his statement is that being ignorant of the fact that even pain lowered 70 percent, if constant will still keep you awake at night, disable you while trying to work, cliniclly depress you, and after all is done you are still in constant pain. When I opted for surgery, I had two children in college, a wife that depended on my income, and bills to pay to simply survive. I really believed that if my back pain was lowered as much as 70 percent, I could “handle” that! I was wrong. I realized after my second back surgery that I had very significant back problems. When the surgeon released me to go back to work, I was still in agony both night and day. I even had to start taking anti-depressants. The surgeon stated that he could no longer give me oral pain medicine. I did not know what to do. A friend of mine with chronic pain suggested going to a pain management clinic. I did and I still pondered taking pain medicine because I knew of the accompanying stigma that came with this type treatment. So I gave it my best shot to exercise, physical therapy and just “bite the bullet” and endure the pain. I don’t believe I have a low pain tolerance, after all I was used to climbing on ladders, roofs, heavy lifting, hot sun, cold air. I was a builder. A hands on builder, not a paper contractor. With the hard work I have done all my life which probably caused my back trouble, I still just could not tolerate the pain. Those who do not have chronic pain, please do not judge those who do. I am happy for those living with just “aging” pain or an injury that will heal and the pain will subside. Chronic pain. Day in day out. Never ceasing. Can’t sleep. Can’t work. Can’t interact with family or friends. I have heard other chronic pain patients state that without some kind of relief, life just was not worth living! I have heard people say of chronic pain patiets He or she just likes the “buzz”, or they must not have a tolerance for pain, or they can’t deal with reality. As for myself, I.do not get a sense of well being, i.e. “a buzz”. I take medicine to help me manage pain so I can interact with my family and friends and work to earn a living. I was a volunteer firefighter for 14 years. No pay, no reward except for the satisfaction of the knowledge that maybe I had helped someone and maybe made their life a little better out of a bad situation. That is all that chronic pain folks want. A little help in a bad situation. Reducing the amount of oral meds that chronic pain patients may take is not the answer. Yes, there is going to be drug abuse with pain relieving narcotics, but the answer is not to reduce the medicine “across the board”. I have read that about 100 million people in the USA suffer from chronic pain to one degree or another. Like I said a small amount of endless pain is more than most people can handle and certainly do not wish to live with forever! The pain management doctors know when their patients are truly suffering and they know which ones are abusing the meds after a short period of time. A doctor takes an oath upon going into practicing medicine that they will attend a patients needs above all and ftrst and foremost. If they are regulated to the point that they can not prescribe the medicine and amount that a patient needs, then where….. is the patient to turn?I realize that not all doctors are neccesarily practicing proper medicne when it comes to pain management, but I bet for the large majority of physician ARE practicing proper medicine with or without drug enforcement looking over their shoulders. For myself I can only say that if it were not for pain management doctors with the authority to dispense pain medicines I do not know how my life would have been thus far. I do know that the answer to drug abuse and misuse is not to punish those of us who are in true chronic, never ending pain by decreasing the amount or the strength medicines we are prescribed. This is an infringement on our right to seek medical care. Pain is not a dirty word, it is now and always has been, and always will be a part of life. Those of you who are not in chronic pain, how about not passing judgement on those who are. I wish no harm to anyone, but those who are taking away any hope of ever being able to deal with their chronic pain should have to live in a pain patients shoes for just one month, maybe less to see how much effort it takes to deal with it.

  8. Dave at 3:29 pm

    Too many people in pain have been like Lucky and Pozzo and have waited for Godot- someone to fix pain care. No one is really fixing pain care. There is no leader to go to waiting ins some closet for someone to let them out to fix pain care. Its up to all who care about the suffering from pain to lead and not wait an longer.
    People in pain are seeing that neither government or professionals are their friends. Government and professionals are too selfish, too egotistical, too careless, too lazy to do what is right for people in pain. They dont have “the right stuff” and dont care enough to know that or to do anything to reform themselves. To them, people in pain are the problem- and that allows them to maintain an illusion of innocence. But there guilty as hell, of course.
    People in pain should learn from the great mistakes of government and the health care industry and create a real vision and plan to transform pain care- and work to implement such.
    I say dont trust those pain care organizations that coddled pain professionals or the health care industry- for clearly they failed to see the problems in pain care as being serious. They thought some minor changes here and their would fix everything-and they didnt and dont care enough to make very great changes in pain care. Their vision was and is too timid to make much of a difference for people in pain.
    These are the times that try the sould of people in pain and thos that care about them. And hopefully youll learn from the great mistakes of the past- or you will repat them.

  9. Wayne S. Swanson II at 5:42 am

    I have taken this opportunity to share my heartbreaking story in hopes these witch hunting Opiate ill informed skeptics will read and understand that I would have no life without Medically prescribed Opiates by a physicians care and strictly monitored monthly urine and blood test. Please remember that An Opinion Before A Thorough Investigation Is The Epitome Of Ignorance! And that a little more compassion from the Medical Field and its representatives could have saved my beautiful Stepdaughters life. Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with ouit pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this bull***t movement to outlaw opiates!

    The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their bull***t war on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.

  10. Deb at 1:22 am

    Finally someone has written what I’ve been saying. There are over 100 MILLION chronic pain patients/sufferers in this country. For those who are truly too sick to participate in an uprising, I’d bet that they have friends or relatives who know how the ridiculous new attitudes are affecting them. And let’s not forget just how much those family members are impacted by the sudden refusal to help those patients. I know, because not only do I have chronic pain (Fribromyalgia), I’m watching my son and my husband as their new doctor tapers their meds, and their pain gets worse. I sign online petitions every single day, and I know that they work. Ask the “rapist judge”. We need to get them circulating, we need to write to our representatives in Congress, we need to write to newspapers. We need to start making noise. We need to educate people who only hear from the other side. We need to stop being scared or ashamed because we NEED pain meds, for, um….PAIN. “They” think if they call us all addicts, we’ll shut up and go away. As for the person who has a hard time visualizing a “march on Washington”-I think several hundred thousand wheelchairs would be one hell of a visual. Cutting patients off of the meds that allowed them to live the best life they could live, and feeding them cr*p like “Studies show that pain pills make your pain worse. Studies show that you’ll do better without pain meds” is inhumane. It’s sure not “doing no harm”. I have a few studies to present to a certain doctor. They list things like the KNOWN harm that OTC meds will do to your body. Like how pain can actually kill you. Like how forcing somebody into a sedentary lifestyle will kill them. One study in particular was done on long term opioid users. Surprise! Nobody died. They actually had a life. This is enough of a rant for now. There is much more to my story. Please, folks. Spread the word. Do your research. Call those lawmakers. We can do it. We have to do it.

  11. Angel at 8:27 am

    Yes fabulous article! I agree we are not only bring discriminated against but the government is leading the charge. I’m sicker than usual today having been on opiods for 17 years to treat chronic leukemia Crohn’s disease and endometriosis. I’m fed up completely fed up with this persecution of my fellow pain sufferers. History shows us it’s always the voiceless that they go after, we need to turn up the noise and be heard

  12. Doug at 4:07 am

    This is a CALL to action for all pain sufferers! It’s time to speak out against the oppression and discrimination that we have all endoured at one time or another. Myself and my fellow members of the Chronic Pain Rights Support Group are calling on our fellow pain suffers to call and email your Senators about all our concerns and issues with the way that several of the Senate Bills regarding opioid medications and addiction treatment and the way they will negatively impact the Chronic Pain Community. Our concerns should be that these Bills spacifically allocate funding for the treatment of addiction with complete and total disregard to the pain community. We should demand that our rights to proper pain relief be guaranteed whether it be from opiod medications, or from natural means such as marijuana. We also need to extremely express our concerns about funding. Research on efficient and safer therapies for treating chronic pain sould be the first concern before prohibiting the use of opiates. The fact that our government is spending more on the treament of those addicted, 28 million people, than they do on finding better treatment, safer and less addictive treatments for chronic pain suffers, over 116 million people is unforgivable. So on Tuesday, June 21st at 3pm eastern standerd time we are asking all those who suffer from pain 24/7, 365 days a year to call and email your US Senators office and demand to be heard. Our goal of course is to make our calls the only ones heard in Washington DC that whole day.
    Please be calm, polite and to the point when you call so we do not fuel the addiction fire any further. If we call and leave angry comments, or just totally be irate and unapproachable, we will appear as we simply want our opiates or Marijuana and are not concerned about anything or anyone else. But if we speak polite and professional, people will listen. Thank you all and we truly hope you can join in.

  13. Christine Taylor at 9:49 pm

    This is from the American With Disabilities Act which was signed into law July 26, 1990

    The Americans with Disabilities Act of 1990[1][2] (ADA) is a wide-ranging civil rights law that is intended to protect against discrimination based on disability.

    Chronic Pain Patients are discriminated against. They must submit to costly drug tests without having previously abused a narcotic. Many of these patients are in too much pain to work and the extra cost puts an increased and unjustified burden on them. Patients suffer loss of dignity, and self esteem. This discrimination allows them to suffer physically, mentally and financially. Persons needing treatment for other conditions are not denied it based on the irresponsible use medication by others.

  14. Christine Taylor at 9:12 pm

    The Previous Federal Conservative Government here in Canada was taken to court and lost several times. In one case a man used to be able to grow his own marijuana to help with pain control but The Conservative Government changed the marijuana law and stated only approved facilities could grow the drug. This cost placed an undo burden onto this pain patient so the Supreme Court ruled that it violated the man’s rights. please read the link below. We have since had a change of Government that vowed to make marijuana legal in Canada but the ruling is helpful until the time the drug is made legal

    I just posted about the discrimination that has been happening with chronic pain patients and waiting to see a human right’s complaint lodged as our Health Care Consent laws are pretty clear. To deny opiates as part of a comprehensive treatment plan is to discriminate against illness/disability and is against the Ontario Board Of Human Rights. It would be great if some big powerful law company took up a class action law suit. I don’t know how it would work in the USA but seeing how the Supreme Court Of Canada ruled with the home grown marijuana issue, The needle exchange clinics and Assisted Dying I would bet that here such cases would win.

    http://www.cbc.ca/news/canada/british-columbia/medical-marijuana-federal-court-ruling-1.3461694

    http://www.theglobeandmail.com/news/british-columbia/supreme-court-ruling-opens-doors-to-drug-injection-clinics-across-canada/article4182250/

    http://www.cbc.ca/news/politics/assisted-dying-supreme-court-federal-1.3406009

  15. Richard Oberg M.D. at 11:47 am

    Matt – thanks for that and Steven Passik is terrific – great YouTube everyone should watch. We ARE in 100% agreement about what you say here and disturbing stuff like that newspaper article is standard fare around here. Try this one and laugh or cry about an ‘epidemic of biblical proportions’ again from the Tennessean out of Nashville (our center of political amazingness of course) – meaning an ‘epidemic’ of 1200 addicts dying out of a state of 6.5 million people where 62,000 die of something else:

    http://www.tennessean.com/story/money/industries/health-care/2015/09/27/overdose-deaths-epidemic-tennessee/32557463/

    Many morally superior people write for the Tennessean and other news outlets. This reporter (Holly Fletcher) appears in it for the exploitation and this isn’t the first time. She fails to mention (in all the death and destruction here that isn’t apparent to most) that despite a state report 4/25/2016 congratulating state officials for reducing mme’s to patients by over a half million last year and continually since 2012, the death rate continues to rise….. oooops. No good explanation for that one. Don’t you love it when a reporter suggests you can go to any street corner to buy drugs around here? I have no idea how you’d do that, my wife doesn’t, and I’ve talked to a half-dozen friends (one who lives in an area with higher abuse problems) and they don’t know either. But Holly Fletcher seems to. And which patients exactly aren’t getting their meds anymore from state officials congratulating themselves on reducing mme’s? Does anyone in Tennessee (except chronic pain patients) care? Nope.

    It’s sad that so many of the excellent reads on pain management sites, etc. aren’t by physicians but Ph.D’s, pharmacists, etc. and more kooky ones by physicians defending themselves on Kevin MD. I accept my own ‘availability error’ only knowing hundreds of physicians in my area or the ones around the state we’ve visited due to illness, but very few of ‘us’ make much sense or are a help and not hinder when it comes to talking reason about pain care and specifically opioids. So, physicians just choose to allow the propaganda or believe it outright and help disseminate it like the goofball from Vanderbilt (who’s supposed to provide pain care). My standards are higher and wouldn’t it be nice if more were that way – but now I’m a patient and don’t count anymore.

    We also have a large cohort of healthy physicians (and not just in this state) who are morally superior to anyone ill and occasionally slip up and say so – about the time I usually head to the exit. I’m really tired of physician smoke screens from 50 years ago they still use as to why they’re being picked on by everyone and few would listen to me anyway.

    I’d love to have a chat Matt and thanks for making contact – I’m not in a good place with my disease right now (undertreated psoriatic arthritic flare ups are miserable) and it’s likely one day I won’t crawl out from under my rock…. will give you a shout ASAP.

  16. Richard A. Lawhern, Ph.D. at 11:19 am

    Danny, you wrote “Dr. Richard Lawhern, I have a question for you: when the Patients Bill of Rights died in 2001, was there an organized, passionate, and politically savvy group of chronic pain sufferers supporting this bill in an active, boisterous manner? I don’t want to assume what your answer will be, but during my 25-year struggle with severe intractable pain, I’ve never seen other sufferers willing to come together as one. ”

    I candidly don’t have details of the public relations campaigns that surrounded the Patient Bill of Rights. But based on the interactions I have daily with chronic neurological face pain patients, I rather doubt that there was an effective lobbying group with financial resources, a persistent National presence and a shared agenda that was acted upon by tens of thousands of pain patients. I intuit that the voices of patients were out-shouted and out-lasted by those of checkbook-bearing lobbyists from the insurance industry.

    Obviously no two people are the same. But from what I’ve observed, large numbers of chronic pain patients are so disabled by their pain or the drugs they take to manage pain, that they have a rough time doing much of anything on a schedule. And this includes joining in advocacy. Also operating is a sort of indiscriminate fear that if they speak up publicly, they may be persecuted privately in much the manner of corporate whistle blowers. Doctors are definitely gun-shy of confronting the DEA and CDC because of the possibility of being prosecuted or otherwise harassed.

    I personally have a difficult time visualizing a chronic pain patients’ march on Washington. But I suspect that such measures of civil disobedience or confrontation may need to be part of any effort that can be effective in changing the public conversation about chronic pain relief versus addiction. Another part of change almost certainly needs to be legal action by doctors to force the DEA to pay damages for the witch hunts they have initiated against pain management docs. Malicious prosecution and false arrest are actionable crimes with criminal penalties. And until somebody legally nails a DEA agent or office to a cross, I must suspect we won’t see much change.

  17. Matt at 6:08 am

    Dr. Oberg,

    A very disturbing article. Yet another example of a myopic, pragmatic, ego driven Demigod that presumes to know what’s best for 80 million Americans.

    Please allow me state the obvious. Our bodies naturally produce endogenous morphine know as Endorphins. The Lord God created a plant that naturally replicates that substance which inhibits the body’s pain receptors. Naturally.

    Chemists such as Richard Silverman created a calcium channel blocker called Pregabalium (Lyrica) or one of my favorites, Paracetamol or Acetaminophen.

    Tylenol taken in it’s smallest dose creates a toxin that attacks the liver, the leading cause of liver failure accounting for roughly 20,000 deaths a year.

    My point is that these Jekyll/Hyde creations force the body to accept a foreign substance that re-wires the brain’s pain receptors. Your body does not naturally create Tylenol or Lyrica by your thyroid gland as it bangs away at your pain receptors, but if you try to stop taking it, wow. Get ready for Rebound Pain.

    For those of you who wish an encouraging thought from a responsible physician,
    Please watch this – https://m.youtube.com/watch?v=qirWmz-9ZHw

    KEEP THE FAITH – KEEP UP THE FIGHT – IT’S YOUR RIGHT!

    To Dr. Richard Oberg:
    I would enjoy a conversation with you directly. My wife is a V.P. at a hospital. I get first hand information from the CDC/DEA/FDA.
    If you would like to discuss this, please email me at P51Mustang@hotmail.com

  18. Lee Salm at 5:35 pm

    I am so frustrated, and I saw this coming as I read about the CDC’s impending decision. I have Cushing’s Disease, RA, degenerative disc disease, facet disease, kidney stones, migraines, upper back pain (need breast reduction), macular degeneration (no pain, except when I get the shots), chronic GERD (as in with water), and other insignificant fun things. Because I have a history of ulcers with NSAID use, proven to Pain Management, and I can’t take steroids, I’m really limited on my options .Interestingly, I don’t respond to things like Percocet or even long acting morphine. Old fashioned Norco seems to be what my body responds to best. I’m trying the long acting, but seems I can’t have the short acting as well. I’m very frustrated, because now I’m taking stronger meds than I started with, all because the CDC has ruled. When did they receive that power? I thought it was a recommendation, but the power behind it is affecting an innocent population. I will, and do, submit to random testing at scheduled follow-up appointments. Why am I, and thousands of other legitimate chronic pain patients bearing the brunt of this? Addicts will still buy on the street, steal, do what ever is necessary to get their fix. We try new meds that don’t work, lie in bed in pain, relinquishing the lives we hold dear in our memories. What will it take for us to regain our lives? I laugh at the thought of overdosing–I couldn’t skip more than one dose of the pills that work without suffering more that I care to endure. News flash: we get no high from these meds; we pray only for relief. Our prescriptions MUST last 30 days, so highs are out of the question. Relief, not pain free, is our goal. Most of us gave up on the pain free a long time ago. I hope the powers that be sleep well.

  19. W H Hulley at 4:55 pm

    What rights………the DEA & other federal agencies are in the back door of the medical profession in this country, Even our US Senate and House will NOT enter the discussion for fear of the DEA and FBI. When it comes to legal RX’s from our MD’s – we are at the mercy of our federal government “back door” thinking. Having worked with a major medical practice in the Washington DC area…….I can state without reservation that the DEA and FBI are in your drug store and MD’s office week…….And folks…..frankly, most citizens are not aware of their interfere into the medical lives of the american people.

  20. Richard Oberg M.D. at 4:50 pm

    Matt – I agree with virtually everything you say except – physicians outside of ‘nuts with influence’ like Kolodny aren’t the only ones. Most so-called ‘pain management experts’ here in Tennessee are just as goofy as Kolodny and equally ignorant citing some of the most absurd nonsense anyone’s ever heard of. And most primary care physicians in our area were never ‘hip’ on scripting for opioids even before it became unpopular to do so. Ex-hospital based anesthesiologists, in general, ARE NOT good chronic pain management folk unless you just happen to find a nice reasonable person and get lucky. Those few don’t inhabit where we live.

    As an example, how about this jewel from one of our ‘mecca’ of healthcare Vanderbilt’s pain management guys (who’s a Harvard trained anesthesiologist BTW) and thinks that anyone who’s ever taken an opioid ‘made it through, but not unscathed’?? After a single dose you’re no longer a virgin and our brains apparently have been completely rewired to want more according to him. No, you don’t have to make any sense whatsoever to be a physician and can say whatever you want and get newspaper space these days. Obviously no hope for someone like me who’s been on them for the last 20 years (and worked full time in the hospital until two years ago highly respected and with a perfect record despite having a bad disease). Check out this doozie and then tell me why anyone would want someone like this on staff or ever want to listen to what any physician ever had to say about this issue again:

    http://www.tennessean.com/story/opinion/contributors/2016/04/24/opioid-epidemic-affects-all-tennesseans/83197228/

    This guy is a nutty bigot just like any other and, as I’ve said many times before, you don’t have to possess one iota of scientific prowess to be a physician. Being a pathologist and having dealt with physicians my entire career, I could tell stories of physician nonsense from sunrise to sunset but you might not ever want to see one again.

    Oh – and Obama doesn’t have anything to do with this – Tennessee is one of those ‘we don’t do Obama-care’ states and goofballs of every stripe seem to gravitate here as much as (or maybe more than) anywhere else. In fact, you won’t find a more hypocritical place on earth – strictly conservative and 100% pro-gun…. just not pro-pill or anyone having enough sense to have access to pain meds (unless you do it illegally) apparently…. for THAT we need big state government to help us along and shut pain access down. But boy, do they weep here for those who die from taking illegal drugs and for that reason chronic pain patients are increasingly out of luck.

    I personally don’t see any connection whatsoever to whether a state is blue or red – they’re all nuts when it comes to this issue. Or worse, abominable people without a conscience. And finally there’s that nagging thing about being a high poverty state which got worse after 2008 and, within this state, the real illicit drug problem areas just happen to be where poverty is the worst …… I’m sure it’s all just a coincidence.

  21. Dave at 3:52 pm

    Douglas- Though there are some tireless unsung heroes advocating for better pain care- most people in pain are oversocialized into being sheeple. Even signing onto a petition seems a bridge too far for too many people in pain.
    Having said that it ma not take millions of pain sufferers to make important changes. And i think a rights movement is what is needed- as ou have indicated. And as others have indicated, government entities will need to be sued- and i think more professionals need to be sued.
    Collectively people in pain have no vision and the pain advocac organizations- though good at building a sense of community and mutual advice and aid- lack the breadth and depth to full see and understand the problems in pain care- not to mention an energetic plan to put pain care on the right track. The NPS has failed- it took 6 years of effort-and the CPATF was wrong not to see its man flaws. Yours truly- and one other person in comments to the NPS called for lowering the prevalence of pain- the CPATF of course didnt believe that was a worth goal. In any event- the NPS is unfunded and now S. 483 may take its place.
    Certain people in pain and ngo’s follow a parallel process as the pain care system and cant create a much better system. In addition they tend to be easily coopted by the powers that be. The power that be know ggiving some money to some of the complainers or giving them some awards or recognition will dampen their ardor for change.
    So while leaders like Gandhi say the difference between what we are doing and what we are capable of doing will solve the worlds problems- it seems unlikely that any time soon people in pain will become well organized like the civil rights movement or the womens rights movement and demand real change.

  22. Dan at 3:38 pm

    This failed war on opoids has now hit palliative and advanced cancer care here in NJ. I say the same it will be a long hard battle. It is most absurd. For now I am here suffering as many and ready to help lobby at anytime

  23. Matt at 2:49 pm

    We are fighting one of the most corrupt government organizations (CDC) second maybe by the IRS. Special interest group like The Phoniex House, addiction centers are poised to profit HUGE!

    Obamacare took medicine from the private sector to the government. Now they are going to take a very large group (chronic pain patients) out the hands of doctors and put us into addiction centers.

    With no options left to you but suffering, you can capitulate, declare yourself an addict and receive methadone for as long as you need. According to PROP – Dr. Kolodny, you can’t determine how long an addict will need opioids. Would you pre determine a diabetic only receive insulin for 6 to 8 weeks? This coming from a person who stated that whether you take opiates for chronic pain or take it for recreation, you are an ADDICT.

    The only problem is that you will be branded an addict, the government will control every aspect of your life, from credit (FICO) to gun ownership, to who knows what.

    Interesting, investment groups are jumping on the band wagon. It’s going to be a Gold mine for them.

    http://www.reuters.com/article/us-rehabclinics-m-a-privateequity-idUSKBN0JM0E420141208

    http://articles.philly.com/2016-01-18/business/69844212_1_addiction-treatment-recovery-centers-addiction-rehab

    Just to name a few. The Internet is loaded with this growing investment.

    They may require us to wear a yellow star on our clothing. Welcome to the new Facisit States of America.

  24. HAZZY at 12:52 pm

    I go to the Pain-Management Doctor on friday !!!!! So, I suppose i will have to jump through hoops again this month, to get my Pain-Meds. Leave us with Chronic-Pain alone and do your job Keeping us out of Pain !!!

  25. Donna Mitchell at 12:08 pm

    I post these very points and get NO response from the migraine community. I support everything you’ve said and hope you get more luck than I.

  26. Richard Oberg M.D. at 11:09 am

    Healthy people are mostly our problem and there aren’t enough of us to override this as Red suggests. Sanctimonious ‘healthy people’ which include our fab media, our fab government propaganda outlets such as the CDC, and many of those who respond to newspaper articles which are mostly recycled garbage from other on-line opioid garbage. Anecdotes now rule the day – when was the last time you saw ANY published media article about someone on opioids who’s done really great?

    Anyone?

    I just read an article written by someone with a flair for the dramatic in the New York Times about an ‘ER Kicks the Habit of Opioids for Pain’ by citing a patient with a back spasm getting a back rub by a physician who then smiled with eternal happiness after pain relief or another who got ‘pranic healing’ (‘energy healing’ alternative medicine ie: placebo – I kid you not). Yeah, they apparently charge for that in ER’s these days including playing harps…… I guess nothing substitutes for the real thing. They quote one ER physician in New York (a professor at New York University School of Medicine none the less) saying, ‘St. Joe’s on the leading edge’. Leading edge of what exactly? Does he mean having ER physicians that know what they’re doing and not over-prescribing or the prancing fairies of woo-woo that now, for real, inhabit ER’s??? This is some of the most unbelievable stuff I couldn’t have made up. Check it out here and cry:

    http://www.nytimes.com/2016/06/14/health/pain-treatment-er-alternative-opioids.html?hp&action=click&pgtype=Homepage&clickSource=story-heading&module=second-column-region&region=top-news&WT.nav=top-news&_r=1

    Yesterday I also got some amazing tidbits from one of our Tennessean newspaper writers who’s always good for a few laughs (or tears if you’re a chronic pain patient) and did an article citing Tennessee having ‘an epidemic of biblical proportions’ a short while ago. In April she repeated with ‘opioid use has death grip on Tennessee’ citing a few juicy anecdotes of horror…. HORROR!! From people who are destined to become walking drooling zombies from taking hydrocodone. And then showing a number of different ways to cite the same stale statistics showing that….. there really isn’t much of a problem….unless you don’t consider anything else people die of and only focus on this ONE thing…..

    If you do that simple thing of looking up the total number of people who die in Tennessee every year, the ‘opioid epidemic’ amounts to about 2% of ALL deaths – meaning 98% die of something else. And of that 2% most were illegal use or not prescription drugs at all but heroin often combined with other substances such as alcohol. And we’re considered to be a ‘high outlier’ state….. meaning most others misuse statistics even worse….

    Sorry – this was the fourth dumb media read I’ve had in two days and it’s just ridiculous – and again as Red Lawhern suggests, it’s not going to go away by just saying how ridiculous it all is……

    Really?

  27. Danny at 11:00 am

    What an excellent post by Douglas! Every comment makes excellent points, as well. Dr. Richard Lawhern, I have a question for you: when the Patients Bill of Rights died in 2001, was there an organized, passionate, and politically savvy group of chronic pain sufferers supporting this bill in an active, boisterous manner? I don’t want to assume what your answer will be, but during my 25-year struggle with severe intractable pain, I’ve never seen other sufferers willing to come together as one. That is, until what I’ve witnessed over the last several months. I know that I am ready to try to be an active member of the US Pain Foundation. I’ve already emailed my Congressmen and Senators. (I even emailed a Congressman or Senator from West Virginia – and I live in North Carolina!) I think that we need to make this a “ground roots effort” by contacting and working with our local city councils, our State Congressmen and Senators, and getting our voices heard in newspaper “letters to the editor”. Hearing (reading) the voices of so many people who are suffering, just as I have, regardless of how long, has empowered me. I can’t “March on Washington” due to my pain, but I can “Paint Washington with Emails”, which in today’s world can be just as effective. Thanks so much to ALL OF YOU who have made your voices heard in this thread of comments, especially Chris Miller, Dawn Cohen and Dr. Lawhern. I encourage each of you to go to the US Pain Foundation website. While Chris Miller mentioned the possibility of task force from the US Pain Foundation taking action, I think we all need to participate and help the US Pain Foundation. Just visit their website. I did, and I found a link that asked me to write “My Story”. When I completed writing it, I was told that I would be receiving a package of information from them… just for telling my story! I’m going to try to fight thru my pain and do what I can to contribute. This can be shared OUR organization and, maybe, with the lessons learned from what Dr. Lawhern referred to in 2001, we can do whatever is necessary to get the respect and treatment we deserve. There are other groups out there who are MUCH smaller than we are (in terms of numbers) and what they are fighting for pales in comparison to what we live with EVERY DAY. But they are being discussed in newspapers and on TV news and on talk radio. In my humble opinion, WE CAN DO THIS! We just need to get THE FACTS out there in an organized, thoughtful way. How many Americans live with pain, live with someone who suffers from pain or knows people who are suffering? Millions! And these Americans are not stupid. They see what works for the people they KNOW are in pain. When you combine the number of chronic pain sufferers with the caregivers, family and friends who know, without a doubt, that medications are crucial for the sufferers, that’s a lot of people! It’ll take hard work, money and effort (things many of us don’t have much of or can’t physically do) as well as time, but I see a future where WE will have a voice and others will listen. It’s the uninformed, like CNN and Anderson Cooper and so many others, who have the pulpit – now. If we come together, get organized and work with the wonderful people who are leading this effort RIGHT NOW (God bless them!), we’ll take that same pulpit and educate the uninformed and get some “common sense thinking” in our local, state and federal government. (I’m sorry for the length of this comment. There’s an old phrase used in a movie that explains exactly how I feel: “I’m mad as hell and I’m not going to take it anymore!” It’s Douglas’ fault. His blog got my blood boiling and got me fired up. I’m not going to sit around and watch what happens. I’m going to try to CHANGE what’s happening. I hope you guys will join me.)

  28. William Dorn at 10:31 am

    Since celebrites are the only ones anybody listens to maybe we should ask respected celebs like Clint Eastwood to speak for the over 100 million chronic pain sufferers in AMERICA.The press would listen to them.

  29. Sandra at 9:18 am

    Great story this what this site is about. You are so right and honest. Thank you
    Sandra

  30. Kristine at 8:13 am

    BRAVO!!!

    Best blog I have read on here to this day. Amazing to say the least.

    Congratulations on your anniversary

    Now lets kick some political butt

    oh..wrote my senator yesterday…waiting for the same generic letter back………..grrrrr……lol….

  31. Sharon Dunbar at 7:44 am

    AMEN!!! ! I GET ANGRY WHEN I SEE THE MEDIA CONSTANTLY TALKING ABOUT PRINCE, WHITNEY,…… ALL THESE PEOPLE DYING FROM OVERDOSING FROM PAIN MEDS,…. “Oh, let’s get pain meds off the market to keep people from abusing them! Everybody gets them too easily and becomes addicted to them! ” forget those of us who are NOT addicted, but actually in severe pain and can’t get out of bed without them! We can’t get out of bed not because we’re addicted and need them due to a habit. We need/ want them cause we hurt so bad!!

  32. Bruce Stewart at 7:42 am

    Right on Doug. I had to LEAVE the state of Florida when the pharmacies would no longer honor my hydrocodone prescription last year. I’m in Nevada now, and my pain clinic will only distribute 4 pills/day of any medication. Thanks to the DEA and the hard caps on the number of opioids that are distributed to pharmacies. Law enforcement making medical decisions for the chronically ill.

  33. Dawn Cohen at 7:18 am

    Some of my girlfriends and I have been discussing this for a few months.
    Then last month at my visit with my pain specialist, reality and the gravity of this subject hit me in the face.
    After a horrible car accident that caused me multiple surgeries, 11 replaced discs in cervical and lumbar, permanent Nerve Damage, Onset of Fibromyalgia. .I became a person with Chronic pain. It took 3 years to find the right balance in a coctail of medicines that don’t quite take away the pain, but make it more manageable.
    I am not alone. From Surgeon to Pain Specialist to Pain Psycologist. ..here I am in the middle of an argument that should NOT include me.
    The Government again has stuck their noses where it doesn’t belong. It DE idea that since there are Thousands of people who overdose on medicines they should not have to begin with that ALL people should pay.
    Family practice and General Doctors, who are not specialists are handing out pain killers like candy. Now it’s in the Media….Prince Overdoses. . Yeah, celebrities gave access to anything they want by doctors who cross the line everyday. Now, I agree, you have a severe bone break and need a weeks worth to help you through. ..ok. but not the amounts of pills that people who have acute pain should have.
    Acute Pain: Severe Pain for limited time.
    Chronic Pain: Constant Pain that does not decrease in time.
    The Pain Specialists should not be in this group. They are specialists. They have studied and time learning best methods for Chronic Psin sufferers. But what does the government know?

    My Pain Specialists told me on my last visit that the Government says I take too much medicine and I have to be reduced to some calculated level. So he reduced my morphine to 1 less pill, and half the mg. But that’s just the beginning, on the next visit he will reduce my Dilaudid to 1/ 2 strength and one less pill per day.
    The Government is so worried about these celebrities and people who shouldn’t be prescribed these medicines OVERDOSING? Worried about junkies OVERDOSING??
    But they didn’t even think of us. The ones who have been great citizens who by no fault of their own have become disabled and have pain that is unbearable. ..who seek the guidance of SPECIALISTS just to survive.
    Now, when this is complete and the government smugly smiles that they accomplished yet another task… will they start counting and considering the suicides of the countless amount of people. Will they give the same consideration to suicides as they do illegal drug overdoses? Do we even matter? Or as a friend suggested.. is there another agenda? I’m scared. The pain is so real. Who’s going to help me survive? We deserve help!

  34. Chris Miller at 6:06 am

    I think Mr. Marsh raises an important point–the people with chronic pain who are responsible patients need to organize a force with a stronger voice to advocate our rights to opiates (controlled and monitored is fine). We need these to alleviate our pain that many don’t understand or care about. Until we organize and put pressure on our local, state and federal regulators (including elected officials) they’ll just continue to listen to the “bad apples” who abuse opiates because it makes them look good politically. We need a force to advocate our needs and get their attention. Until we make it advantageous to listen to us rather than the uninformed, the regulations/limitations on us will continue to get tighter. Maybe the US Pain F. could organize s special task force of some kind to press these issues for us in a stronger manner.

  35. Richard A. Lawhern, Ph.D. at 6:03 am

    While I share many of your sentiments, Douglas, I am also aware of past efforts to pass a US Patients’ Bill of Rights. In 2001, it was initially passed in the US Senate and then amended before being killed. The key factor in this process was opposition by the US Insurance industry which bought themselves some legislators with campaign contributions. To be successful in changing such outcomes, pain patients may need to be prepared for a very long and uphill fight, quite likely in the courts.

    See https://en.wikipedia.org/wiki/Patients%27_rights

  36. Bobby Meservey at 4:12 am

    Thanks for saying what needs to be said.We are a large community of suffering silent people.I have recently been appauled by the way Doctor’s, mine included, have handled this propaganda based campaign.It is a campaign, and it is fueled by a new, “life saving” drug that will save lives.At least that is how they will present it.Belbuca, comes to mind.I myself am so deep inside my pain, I don’t have the fight anymore.I wrote our senator, more than once.They don’t care, the people who are making these decisions are really unknowledgeable, and it is hurting our community bad.People are making really bad decisions, and I am one of them, as the pain is WAY too much for me to handle.I have been a pain patient for 14yrs. and suffered my whole life.I don’t want to fight for what has kept me out of the hospitals, and discrimination, it is bad here.Thanks for your winning attitude towards something that is VERY much an epidemic.Discrimination, humiliation, isolation, and finally it goes inward, I used to function too.Now I struggle, and since taken off medication, I am dangerous to myself and others.Not in a vicious way, just that a mild situation, can escalate really quick when you can’t control your emotions due to constant pain.I wish we could rally as you said, we are a large community, and we could tip the polls, but it takes alot of people getting serious.They have the upper hand, as patients that have no treatment are chasing their tail, not seeking as they would have you beleive.Seeking releif, yes, yes I am.