A Call to Arms for the Chronic Pain Community

A Call to Arms for the Chronic Pain Community

By Terri Lewis PhD.

Since 2012, and more recently in intervening months, weeks and days, the climate of health care for persons who require support for chronic and intractable pain has deteriorated – in part because of the politicization of health care that includes mental health, substance abuse services, care that addresses pain. The conflation of health care with other social issues, crime statistics, and the introduction of illicit drugs into the public mainstream blurs the lines across the system and creates fear at every level.

This is simply unacceptable. The continuing campaign by DEA directed at targeting small healthcare specialty providers who treat complex illness is an example of this contaminated environment. Not only is it destroying the capacity of the healthcare system to serve its sickest citizens, it is contributing to reactive legislation and regulation that cannot possible contribute to any kind of a system solution for directing resources appropriately.  It is based on lies, bad data, fear mongering, and the maintenance of structural inequities that assure the resources of the many are reserved for the few.

Terri Lewis PhD

We are feeding the bear of fear, but it’s not the bear we should be feeding.  The evidence for the feeding of hysteria is all around us. Structural deficits contribute in a large way to increasing deaths by overdose, drug poisonings, suicides even as scripts for legal prescriptions are reducing.  The volume of persons battling addiction is increasing even as communities are unable to fund appropriate services for treatment. Mental health and economic strain is directly reflected in mass gun deaths. 

Picking on sick people and the doctors who treat them is shooting at the wrong target and directing the wrong resources into these problems. We are done putting up with it.

We are done allowing anyone to make us feel afraid, invisible, powerless.

If you are a policy maker, you are accountable to us. We will have policies that serve us.

If you are a physician we will support you in the practice of your profession but only if you provide equitable services to all while seeking collaboration with your colleagues.  Our precious dollars will be focused on those who serve us.

If you are a lawmaker we expect your activities to open the door to ensuring the least among us are represented, served, and have access to participation. Our votes will be reserved for those who serve us.

If you are an educator, we expect you to arm yourself with the best science and research to groom the next generation of care givers and policy makers. We will be served by professionals with the knowledge and skills that lead effective community change.

If you are a consumer trapped in this nightmare, we will support you to develop the self-efficacy skills to work your way past this nightmare. 

But here’s what we won’t do. We won’t put up with this anymore.

We are DONE being invisible, powerless, silent.

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Authored by: Terri A Lewis, PhD.

There are 63 comments for this article
  1. Audrey Lynn at 3:41 am

    There have just been new groups added to Facebook for each state. We are gathering addresses, emails, phone numbers, and Twitter contacts for state senators, representatives, HHS, and who from your state is on what committee. I am a member of ATIP as well, and between us and the chronic pain community will have talking points, suggested paragraphs for your email or letter to your elected officials, etc.

    These groups have just been set up within the past week, so please bear with us as we work out any kinks. In the Facebook search bar, search for (Yourstate) Pain Advocacy Group. We are hoping this makes things a tad easier than scrolling through 500+ legislators contact info. We also have a main group for admin, moderators, doctors, etc. so we can get accurate information to you as quickly as possible. Thank you all, and a special thank you to Dr. Lewis, Red Lawhern, and others that are willing to help us stands up for ourselves – we are gaining momentum and ears!

  2. Dee at 12:10 pm

    Below is a comment I found on a request from PROP to the FDA Docket, the title said they wanted the FDA to take what they called ultra high dose off the market. The title is misleading as they consider any pain pill over 30mg to be high dose.I imagine most people took one look at it, said “I am not on a ultra high dose” and didn’t leave a comment. I thought the comment below was very good and hope you do too. Thank you

    When medical science can not cure the patient then the only hope left for the patient to be spared some of the agony and be able to have some semblance of a normal life is sufficient pain medication to allow them to get out of their beds and do some of the things they must do for their families and themselves. Being bedridden and in constant agony is no life at all.

    There is no artificial limit to the amount of opioids it may take to ease suffering which is effective and fair to the patient. The level is best set by the physician and patient who know the effectiveness of the treatment best. Severe pain which is untreated is a deadly disease which will kill by way of stroke, heart attack, shock, and progressive deterioration as the patient becomes totally bedridden and in agony.

    The claim that prescription pain medicine is causing an epidemic of opioid deaths is fraudulent. These deaths are primarily from illegal fentanyl and other drugs purchased on the street. By inhumanely interfering in the proper treatment of pain patients who have no other cure or relief from their pain than opioids government agencies are ensuring that these patients will die in agony whether in desperation from suicide or from other means which severe pain and agony will cause.

  3. Linda at 5:27 pm

    That’s what I would like to ask Andrew Kolodny. This veteran is in severe pain….what do you think should be done about that? But before you answer, this veteran has already completed all other suggestions given in lieu of taking opiod pain relievers “.

    I wonder what his reply would be. Kolodny wouldn’t be able to suggest his favorite – rehab – because this veteran like most everyone else suffering needlessly, isn’t on opiods Dr KOLODNY SO NOW WHAT!? Is THIS the point and time you have no answer yet? ”

    I wish Representative Tray T had the chance to question him under oath. The oath wouldn’t mean anything to Kolodny, but I have zero doubt that Mr Gowdy wouldn’t make him squirm like no tomorrow. ,

  4. Holly at 11:44 am

    I don’t know how? I’ve often asked who has the power to stop this? I’m being being reduced every other month, then when my pain management Dr. said it’s for my safety and so she can sleep better at night I not only had one of the biggest meltdowns but once I got home I started searching for another pain Dr. I do have an upcoming appointment soon with new Pain Dr. On the wall in her waiting room is her Hippocratic oath framed. HA! I have written called and signed everything there is….we are ignored! The only e-mail I have ever received in reply was a form letter.

  5. Cynthia at 12:29 pm

    Kolodny is a dangerous fool who MUST be silenced somehow. Ive heard him say several times that there are only two appropriate uses for opioids.: briefly after surgery and terminal illness. And THIS is the man the media gives a platform to. It’s beyond outrageous. …..on another note, I recently met a man who lives in my apt. Complex…he is a veteran, cannot get pain medication from the VA. He is suffering badly, speaks of not being able to carry on much longer, etc. the VA is also beyond outrageous. How the hell are these things happening???

  6. Linda at 2:50 am

    Yesterday’s Bloomberg Report did a big piece on this and once again, they quoted AND did their reporting based on, yet again, Andrew Kolodny. Not once in the lengthy report did they ever even talk about – what to do about people’s pain. Instead, it talked about a man’s pain journey, making him look like a man who spent years of his life looking for drugs, not about a man in pain. It talked about how his doctor was so uncomfortable prescribing the high doses he needed that he but him off completely. The bigger part was about getting him into rehab. The man committed suicide from too much pain. But again-

    The two takeaways from it was,
    Andrew Kolodny and the need for rehab, not opiods. And-

    People’s pain had nothing to do with the article.

    And on Bloomberg too. So disappointing. Sorry I don’t know how to insert the Link

  7. Cynthia at 7:01 pm

    Donna Ratliff….I Agree with you. Doctors need to unify and approach the government, pharmacists also….if these powerful people unify and speak up on our behalf, the legislators will listen. I don’t believe very many listen to pain patients because they think we are drug addicts, they think we could just quit taking meds and get by without them just fine. The professionals need to correct this mistaken picture that so many believe is true.

  8. Donna Ratliff at 1:11 pm

    This is great news and I thank you for the Call to Arms today. Thank you, Thank you. We all know that this is a bipartisan issue so it doesn’t matter which side of isle anyone is on, we have to tackle this.
    Pain care has been under attack for a very long time and it has to stop for humanity.
    I’m going to put an idea out there and if it doesn’t happen, well at least I mentioned it and tried to help.
    I honestly believe that the president has Zero knowledge on the subject of chronic pain.
    I also believe that if a group of physicians could get a meeting with him at the White House such as the addiction community has done that things would change for everyone.
    The President needs to hear both sides of this story as all the Politicians do.
    Up to this point in time, he’s only heard repeatedly from one side, the Addiction side plus all the misinformed main stream media. This certainly isn’t fair at all. Regardless of what his non supporters feel about him, we have to unite on this subject of pain care or it’s going to disappear. I believe he does have common sense and if this group of physicians, pharmacists, possibly with a few patients and caregivers that this meeting could help a whole lot. There has got to be a way to get invited to the White House. Many, many others have done it.
    Between all the pain care advocates there are online in support groups and the pages on Facebook, I’m sure we could come up with a way to figure out how to get this meeting. I know advocates have ideas and there are organizations currently working to get people out to speak with lawmakers. That is very awesome but maybe it could possibly be an avenue to this Presidential meeting as well? I dont know but there has to be some way.
    I’m only throwing out an idea to help.
    I applaud all the Advocacy efforts being made by everyone today because we all know that pain care is in serious Jeopardy right now.
    Things in our country are changing so I don’t think it’s too late to be heard yet,.. but time is running out. I’m hopeful to see that physicians are finally coming together on this very important issue. I wish it had happened earlier but better late than never.
    Fantastic article!
    Bravo Dr. Terri Lewis.

  9. Linda at 11:59 am

    Good Lord. Why tgtmtgg This being enforced. Are there exceptions?
    Thank you! And to think a group of democratic senators are, have, already drafted a bill for 2018, to put New MAJOR RESTRICTIONS IN PLACE limiting access to pain relief even more! I don’t recall off the top of my head what the bill was exactly, I just know it was written already and going to be a slam dunk, and thinking to myself “how can This happen! “

  10. Richard A. Lawhern, Ph.D. at 5:57 am

    Cynthia, while I believe I understand your position from many years of talking with chronic pain patients, I must still point out a reality. Doctors are allowing themselves to be intimidated too. I hope you will hear this as gently intended.

    If you will not speak, then you CANNOT expect others to speak for you. There are no positions of perfect safety either in life or in this specific issue. Terri and I both take risks of retaliation by being as publicly visible as we are. But we cannot do this job alone. We need you and hundreds of thousands of others to stand up and say “enough already!” in both public media and the halls of our Congress and State Houses.

    Yes, it’s scary. Yes, it’s tough. But also yes, it is NECESSARY.

  11. Cindy Johnson at 5:37 am

    I am a chronic pain patient desperately looking for an alternative to this deep, grinding, constant pain that has stolen my life. I just about had it dialed in then boom, they were reduced. I am not a drug addict but I need to know if MMJ is going to work…but then I’ve broken the contract. How about some time to transfer to other solutions??? I am petrified!

  12. Mist at 11:55 pm

    U.S. Code › Title 42 › Chapter 7 › Subchapter XVIII › § 1395
    42 U.S. Code § 1395 – Prohibition against any Federal interference
    US Code
    Notes
    Authorities (CFR)
    prev | next
    Nothing in this subchapter shall be construed to authorize any Federal officer or employee to exercise any supervision or control over the practice of medicine or the manner in which medical services are provided, or over the selection, tenure, or compensation of any officer or employee of any institution, agency, or person providing health services; or to exercise any supervision or control over the administration or operation of any such institution, agency, or person.
    (Aug. 14, 1935, ch. 531, title XVIII, § 1801, as added Pub. L. 89–97, title I, § 102(a), July 30, 1965, 79 Stat. 291.)
    Congress DEA,CDC,and FDA are breaking the law Period

  13. Cynthia at 8:11 pm

    Dr. Lawhern thank you for your suggestions. To be honest, though, I am very afraid of calling attention to myself, which such a process would surely do. I live in a place that has not been impacted by the crusade, far as I know. Not yet, that is. I surely cannot risk losing my doctor or my medication. I think it’s just too scary for many of us patients to speak up. Unless we can do it anonymously. I think doctors and attorneys will have to wield their power to stop this. Helped along by testimonials from patients who have been affected.

  14. Richard A Lawhern, PhD at 8:09 am

    For Cynthia: You asked “where can we send our letters?” The organization that I have co-founded is suggesting a different approach: look up the State district offices of your legislators (2 Senators, 1 Representative, State representatives, Governor’s Office), and call them by phone to request in-person interviews with a healthcare legislative assistant or office chief of staff. ATIP will provide you with briefing papers and background preparation for the interviews. We’ll help you put a human face on pain. And help you to shape your own message to your legislators: that they must stop believing the hype and nonsense which anti-opioid advocates have flooded into the public conversation. They must act to balance the scales for millions of people in agony for whom opioid analgesics are the only therapy which works.

    And for Terri Lewis: thanks for allowing me to piggy-back on your important article. We’re all in this boat together.

  15. Terri Lewis at 4:13 am

    TO BEGIN THIS JOURNEY, you must begin by embracing your responsibility to become INFORMED about the conditions under which your state is regulating your health care and the dispensing of important medications. Today, here is what you can do to become better INFORMED and begin to take control over this aspect of your health care:

    (1) Obtain your medical records after you review the information on these links-
    http://www.healthinfolaw.org/…/who-owns-medical-records…
    https://www.hhs.gov/…/for…/medical-records/index.html

    (2) Find out what YOUR state’s regulations say about the management of pain and who administers the program by review the information on these links –
    http://blog.aapainmanage.org/state-state-laws…/
    http://www.namsdl.org/

    (3) Go to the internet and search your state legislative health care committees and its membership. Determine who your representatives are in your state house and your senate.

  16. Kel b at 1:10 am

    Thank you terri, dr lawhern and. “Doc anonymous”. For those who haven’t read all comments, read these 2 mentioned.

  17. K.H. at 8:52 pm

    How about, for starters, set up a central site– website, phone number, FB page, whatever– at which all CPP’s and caregivers, harassed & targeted doctors, pharmacists forced to comply with actions they know are wrong, etc etc can voice/record/write their complaints? Briefly and concisely. Even something as simple as a name and “I’m a CPP (or other) and this witch hunt has left me (under medicated/unmedicated/unable to find a doctor/in agony/terrified/terrorized/unable to work/unable to get out of bed” etc etc. Something that would show the sheer numbers of human beings being tortured, having their human rights violated that could then be sent to every politician, every alphabet soup organization, every individual whose filthy fingerprints are all over this nightmare, etc etc. WE know the numbers are huge. Delivery of the names alone could be a 21st century jaw dropping re-enactment of the famous Letters to Santa Claus care of the U.S. Courthouse in “Miracle on 34th Street”. Hey, it’d be perfect timing. Tis the season…

  18. Mist at 8:35 pm

    I feel that we need to flood social media with articles and the truth of what is being done to chronic pain patients …a Twitter account is a start it is easy to get an account. Facebook too.
    Social media is free 33 people commented only 7 shares of this story sent to Twitter , 220 shares Facebook is a out reach , if #metoo grew so fast because of social media so can CPC”s plight.
    Terry ‘s call to action can be backed up. It takes US All.
    If we do not see change who’s fault is it ?
    every vote counts every post-story counts We Count.

  19. Frank Alexander at 7:28 pm

    Dr. Lewis, thank you for a succinct and articulate article outlining the state of events and what actions must be taken by the pain community. I wrote a comment and posted to an article yesterday by Ed Coghian stating that, in my opinion, I feel chronic pain patients are where blacks were in the 1950’s, the gay and lesbians of the past, the Jews of Nazi Germany of the 1930’s. Easy targets who have no rights or voice. It is also time to file a class-action lawsuit against the CDC, FDA and DEA to stop these systematic attacks on the chronic pain community. This is inhumanity of the worse kind.
    Politicians, instead of listening to their constituents (all of us) and seeking to oppose and stop these draconian ‘guidelines’ of the CDC and the crackdown by the DEA and state narcotic agencies of clinicians instead embrace their measures. And promise to ‘be the generation to end the opioid crisis.’
    And another point. If 100 deaths a day from ‘opioid overdoes’, a number that has been called into question by many, constitutes a ‘crisis’ what does the 1300 deaths a day from tobacco usage constitute? And these figures are straight from the CDC website:
    https://www.cdc.gov/tobacco/data_statistics/fact_sheets/fast_facts/index.htm
    Where are the politicians, news outlets, government agencies? Why isn’t this causing everyone from the president to local law enforcement agencies having round the clock news coverage?

  20. Cynthia at 6:49 pm

    Dr. Lawhern…where do you suggest we send our letters….as you stated that writing to legislators won’t accomplish it. Where do u suggest we send our writing? …btw, I have written to all My elected officials, several times over the past few years…, have yet to receive an answer., even though I always request a response. I get responses on other issues, it not on this one,

  21. Cynthia at 6:39 pm

    Dr. Lawhern…thank you thank you! A tangible presence is forming , a new organization! These sorts of things are what we need… I will find your new organization. I’m on FB everyday…will definitely be at your place there. ….and may doctors get organized across the country, and band together to fight this, why aren’t they doing this? My God, they have way more power than we patients do, if they band together, they will be heard, because there is a dr. Shortage in this country…so they hAve tremendous potential clout as a group. I know they are afraid , but if they band together….that’s my prayer.

  22. Cynthia at 6:16 pm

    Ive heard that dr. Forrest tennant is now under investigation. What a crime. …and thank you to dr. Young for having the courage to post here and to stand up for what’s right. My prayer is that doctors will organize and band together to fight this crusade against pain patients.

  23. David Cole at 6:09 pm

    Thank you Terri for all that you do! How can so many educated anti opiate zealots with no common sense be so freaking stupid. These people are committing genocide against the elderly, disabled and wounded Warriors. As far as I’m concerned it’s time to legalize opiates, if you can’t go to a pain doctor to get your pain controlled, what are we supposed to do? We need to start suing people, these people are guilty of crimes against humanity. As far as I’m concerned every anti opiate Zealot needs to be tried convicted and sentenced to life in prison or death. I have never had so much hate in my heart, that in itself is killing me.

  24. Cynthia at 5:54 pm

    This all sounds good, Terri, and thanks for taking the time to write it. But we are powerless at this point to stop what is happening. If middle class working people can’t even afford healthcare, it’s for sure nothing is going to be done to help the poor and disabled. The insurance companies are angry at the congress, and they seek revenge for not being able to easily call all the shots anymore. But they still wield most of the power, through lobbying and bribes. How do you envision this will be changed? I just can’t picture a solution for the ill and disabled in a country as corrupted as ours.

  25. Ed Stines at 4:47 pm

    Thank you, I wish I could do a jig or jump for joy, but honestly, I can’t stand for very long or jump because of pain and leg which I fear I will lose one day soon. Good luck and thanks again.

  26. Chris at 4:29 pm

    Everyone!!!!! Sign up at the ATIP website. Google the Alliance for Treatment of Irretractable Pain.

  27. DEBRA MCDONALD at 3:35 pm

    You are an answer to prayer!! If I wasnt hurting so badly I would be jumping up and down!! Thank you for hearing us and supporting us!

  28. William Dorn at 2:29 pm

    Look at Sen AL Frankin he was one of the 16 senators who got the FDA to reduce the production of opiute medicines in 2018.Its sleeze like him thats attacking us.Everyone send a copy of this wonderful post to your state rep.This is war folks you had better treat it so.I am 64 years old and this is the most corrupt goverment in my lifetime.Get mad and get on the phone with your local media and your state reps and demand to be heard.

  29. Tracy Bryan at 2:17 pm

    I noticed when the government first started in 2014 I believe or around there, when doctors were first intimidated by the new rules and regulations and pain mgmt clinics boomed, at that time people had to go to the streets, that’s when overdoses began to rise, Obama was in office and the boarder drugs flowed. The government screwed up and is the main reason why we are where we are at.

  30. Mist at 1:46 pm

    ” These peopel were ignored as their Symptoms turned out to be Cancer. It was more profitable to ignore the initial symptoms and let it metastasize than acknowledge pain. The whole “Opiate Epidemic” Story-line ” Kathy C I personally know 3 people who this happened to .
    2 were vets and one a girl friend . VA due to their new rules my uncle (elderly) shot his brains out in a shed away from the house VA refused to adequately treat his cancer pain he said he was “Done”.
    a friend of my SIL’s Bill laid for 2 months at VA hospital bone cancer and would have lived longer if they would of treated his pain instead they make him so sick he had to live at VA to get pain treatment and still his pain was so great he couldn’t raise his hand large family banded together and said Treat his pain with better drugs or else. They treated him and a week later he died.
    My Girl Friend’s Brain cancer had returned her docs ignored her pain the first sign she had when she had cancer the first time. she died at hospital very unexpectedly .
    I sent letters to Dr.OZ who is looking for women with chronic back pain and the tv show the doctors,
    I am not very good at putting my thoughts into writing but I tried,
    Canada passed a law to give herion addicts their heroin the ones that other treatment won’t work for but they go through a doctor .
    Countable
    “Attorney General Jeff Sessions has been a vocal opponent of marijuana legalization, for both medical and recreational purposes. But he may have met his match in Alexis Bortell, a Colorado 12-year old who is suing the Attorney General in order to overturn the federal government’s prohibition on medical marijuana.

    Why does it matter?
    Medical marijuana is legal in 29 states and the District of Columbia, though not in Alexis Bortell’s home state of Texas. Bortell has “intractable epilepsy”, a condition that produces life threatening seizures and does not respond to conventional medications.” good news is “The federal government has already lost one motion to dismiss the case.”
    We can not fight if we do not know how ?
    I sent message about this case to reps that when there is no alternative then what alternative for pain patients and this child of course my state can not get MMJ illegal, or Kramton Illegal.There is Nothing but illegal or suicide for pain patients my state and quite a few others.

  31. Senior Hospital Administration at 1:27 pm

    I am a senior staff administrator at our local hospital. My spouse is a fellow daily pain sufferer and I have discerned something I have not seen mentioned. In the years following the implementation of the ACA, I have watched independent practice physicians either retire or become an employed physician with a hospital. This is the case in 20 out of 25 physicians in my immediate area. As a non-profit hospital, our income relies heavily on the government for reimbursements. We are held hostage to ACA guidelines which can include CDC mandates, CMS rules, Blue Cross Blue Shield’s requirements, etc. the physicians that are now employed by the hospitals are also held to these standards. To go against them is to put the hospital at risk. This entire “opioid epidemic” has been so well plotted out with great precision. It runs far deeper than we can imagine and it becomes more clear to me how thoroughly we have been duped. It is sickening to me that my America has betrayed the pain patient and my spouse as their needless suffering continues!

  32. Joy Lee at 12:44 pm

    In Sitka Alaska the entire town has stopped providing pain management treatment. All physicians have turned their backs on us. They don’t want to deal with the hassle of regulations. I had to leave Alaska to find medical help in Oregon. If I want to live in my home in Alaska my only choice would be street drugs for pain management. I won’t do that so I had to leave. How sad

  33. Steven Rock at 11:45 am

    This whole anti prescription opioid push is criminal and should be dealt with by the courts as felony murder for the people committing suicide as a last resort to stop their pain. The people who are committing suicide as a way to end their suffering of intractable pain should all be classified as murder brought on by the CDC, DEA and all who make people suffer needlessly in order to save money on health care. I truly believe that the guilty should be punished with life in prison for the suicides they’ve caused and maximum sentences to be levied for those leaving patients to writh in 24/7 intractable pain. This will change the way the most vulnerable people in society are treated. Do not treat them as addicts for the sake of higher profits. That IS CRIMINAL and should be dealt with as such, “with maximum penalties.”

  34. Leigh Anne Young MD at 11:26 am

    In TN laws placed in effect since 2016 dealing with the use of opioids for chronic pain have produced an almost doubling in the death rate from fentanyl overdose. ( a little over 600 for 2016 and over 800 by July this year ). I can’t find the new rate for November and wonder if this data will be buried in this present day inquisition on those with pain. This fact is what I call the elephant in the room in TN.
    No one is writing about this or making comment on this fact. In part I think that is due to fear of the TN attourney general who has made this a top on his agenda.
    I myself am in fear of this inquisition being carried out on those who practice pain and those who have chronic pain. I am a provider trained and boarded in Internal Medicine medicine since 1993. Over many years I have developed an interest in treating those with chronic pain- initially in the veterans administration and later in my private practice with my husband an anesthesiologist and delegate of the American Academy of pain. My husband and I confounded Simpson Clinic treating chronic illness and the pain which these illnesses create. We use many of Dr Tenants protocols and believe that short acting opioids are often most effective for those with chronic pain. I am new to this internet group. I have been encouraged that my husband and I are not alone in our goal to help those with chronic pain. This article is like balm on an open sore. I look forward to more of you articles and appreciate your time devoted to writing.

  35. Jacqueline Moran at 10:43 am

    Thank you Terri for writing this letter! I don’t feel so alone knowing there are others that feel the same way as I do..
    I have been suffering with chronic back pain since I was hurt at work 7 years ago. Since then I have to sign a pain contract every 6 months in order to be prescribed pain meds.. I was appalled the very first time my Dr asked me to sign it.. I’m a law abiding mother of five son’s and six grandchildren and I have been treated so poorly by the medical professionals because I am in constant pain..

  36. Sandy M. at 10:39 am

    Thank you Dr. Lawhern and Anonymous Dr., as well as the wonderful Dr. Tennant, who has been fighting for us for years. I am 70 years old and taking my meds like all of you, never requesting medications too early and trying to make them last as long as I can stand it, and always have. My Dr. at this month’s visit was so different. I’ve been going to her for years, since the 80’s, but not having her write my scripts until this year because my neurologist retired. She knows I had the hemorrhage in my right thalamus in 2001 and is the one who sent me for MRI. And, she knows I was diagnosed with Central Pain because of the effect it has had on me and my body. I just went to a pain clinic doctor until he left and then my Neurologist I had for 25 years or longer, like her had been writing my scripts, but he was in his 80’s and even kept me on after his retirement because it is so hard to find any kind of Dr. Who understands and will treat Thalamic Pain after a stroke in that area. There is no cure and it only gets worse. I was 53 when out of the blue I had a hemorrhagic stroke. And, I have had Scoliosis . surgery with a back full of metal and still have pain. I’m so tired of writing reps and senators, they don’t care. It’s the LAW you know!
    I want my doctor who knows and understands me, not the government telling me what is good for my pain, not the gov’t who doesn’t know me, nor any of us who are truly in pain
    We have been thrown right in with junkies, and this isn’t right. I’ve spent more time in bed than I did when I had medications that gave me some relief. Hoping all have some low pain days (yeah, right! ) so you can enjoy Thanksgiving. I won’t be doing anything. I told my girls to have their in laws over that their dad and I just don’t feel too good. I have so much to be thankful for, I really do, but I hope God will help us all find a way to be understood and not treated like drug abusers and junkies. Thanks for listening.

  37. Sheri at 10:19 am

    Thank you to each and every advocate, fighting for us pain patients and publishing actual FACTS about this whole inhumane situation.
    I was cut off cold turkey 15 very long months ago and have gotten to a point where I’ve told immediate family my intentions.
    There seems to be a small glimmer of hope building up with you warriors, that makes one want to hold out a tad longer for the results!
    Thank you so very much!

  38. Karen C. at 9:59 am

    Bravo! Thank you for this wonderful and insightful article. I have written MSNBC, Politico, The Daily Beast, my Senator, congressmen/congresswoman, and everyone else I can think of to please, please, give pain patients a voice. Needless to say I have only heard back from my Senator. He and I have been emailing back and forth for weeks. Will it make a difference? I doubt it. I have RSD/CRPS that is in all four limbs and my pain medicine has been cut and I don’t know who else to write.

  39. Byron Hood at 9:40 am

    For all of you who ask “what can I do” – how about getting out of your chairs and calling your elected representatives? I have! Believe me, because most people are lazy and just grumble (or complain on-line) those few who actually DO visit/call/write/email their elected representatives really stand out.

  40. Matthew J. Smith at 9:31 am

    I sincerely hope that ALL the disparate Chronic Pain Advocacy groups can unite under one umbrella organization, such as the American Patient Defense Union, so we have the numbers to exert influence and be recognized as significant. …I would also encourage everyone to @ and # AARP, AMA, NIH, UN, WHO, and all Media groups just to see if we can be recognized by these orgs so that weay build political clout, quickly, as people are DYING, NOW !

  41. Rick at 9:21 am

    Great content Terri and thanks. State sponsored torture for those of us burdened with intractable pain IS NOT ACCEPTABLE!

    We need to form a non-profit and combine ALL our efforts because what energy we pour into our individual writing campaigns simply isn’t working.

    Americans for the ethical & Responsible treatment of Intractable Pain Patients.

  42. Linda at 8:26 am

    Perfectly stated. Thank You!

    I have a doctor who, on my appt last week, rejected anything the national pain report puts out, stating “well, it’s just another advocacy group right, that doesn’t know the science behind how combining different drugs have been the leading cause of all these deaths and overdoses, and just last week our group lost two patients”.

    First of all that’s not true because if two people died from that it would have been all over the news. Second, it would have been especially on the news because it was supposedly from the same Medical Group. Third, her whole statement to me had nothing to do with what I was trying to talk to her about!

    I hate to tell her but—

    Advocacy and people joining together is how AMERICANS HAVE ALWAYS GOTTEN CHANGE TO HAPPEN.

    So to say, “JUST an advocacy group “, is saying how ignorant they are!

  43. Kathy C at 8:09 am

    We have been censored out of the conversation. After reading nearly every “News Article” and following various TV “News” Advertorials surrounding the subject, there is one constant, barley a mention of the existence of actual Pain. I live in New Mexico, a state in denial about all of this. They had a long standing Heroin problem, which they failed to acknowledge for decades. This state put safeguards in place years ago, Prescription Drug tracking Database, and an “Awareness Campaign.” They touted their useless Methadone Program, which was more of a do it yourself drug “treatment” program. The state Epidemiologist touted the state response to this as “At the forefront.” Compared to the lack of any response by other states, that could almost be true.
    We are seeing the end result of lies, denial, and a for profit extremely dysfunctional Healthcare System. We are not here by accident, this was a carefully constructed Marketing Scheme, tied to a manipulative Propaganda Campaign. The Industries that benefited, and still are from this rewrote the narrative. The Lies and Hysteria are an excellent marketing tool. Before the A.C.A came out, serious Newspapers hyped the “Treatment Industry” and the other benefactors as a good Investment. Even the president made sure to do some Corporate Advertising in his Speech, touting CVS, which has profited in the billions from this campaign. They caught the Pharma Industry red handed, but that was edited out of the discussion. They even rerouted the anger at Big Pharma and directed it to peddle more Pharma Products.
    Corporate Media no longer covers anything negative about the Healthcare Industry, so we don’t exist. They replaced serious Journalism with peddling useless new Age Quackery, Faith Based nonsense and pseudo Science.
    Here in New Mexico, where we have a Catholic Hospital as a Monopoly here, the word Pain is red flag for drug abuser, if your insurance does not pay enough. The local News acts a PR outlet for the local Healthcare System, so they edit out the costs, damage and mistakes. There is a pattern of misdiagnosis which they no longer mention, it could make the System look bad, or ruin Real Estate Speculation. I know several people who reported pain to their Physicians, not becasue they were seeking drugs, but becasue they were concerned and in their 60’s and 70’s. These peopel were ignored as their Symptoms turned out to be Cancer. It was more profitable to ignore the initial symptoms and let it metastasize than acknowledge pain. The whole “Opiate Epidemic” Story-line has been very profitable indeed. In the meantime as they railed about “prescription drugs” they lied or misdirected people about the real “Epidemic.” The bodies are still piling up, from the illicit drugs, local Journalists wrote sensational pieces about the “Opiate Epidemic” leaving out key facts. Even now they are telling us about the Lawsuits against big Pharma, leaving out key facts, like the complicity of congress, or the Regulatory Boards who allowed this.
    We have two groups of Pod People, both are pretending the system is working. In order to keep up this pretense they edited out people with pain. They edited out the Veterans returning injured, except for patronizing articles about “PTSD” to undermine their credibility. The Psychology Industry rewrote the DSMV to discredit people with pain, and even people with adverse outcomes from Medical Care. Not only are they “Mentally ill” now, they are subject to suspicion. This is what happens when the Industries that profit from the dysfunction are allowed to distort reality, through the Media for advertising purposes.
    We need to stop telling our “Stories” and start looking at Facts. The Industry monitored these groups for more than advertising purposes, they had to counter the Facts, and create a false narrative.

  44. Lisa Davis Budzinski at 7:54 am

    👏👏👏👏👏
    Yes, we Chronic illness patients in daily chronic pain are DINE with all this nonsense.
    We haven’t much energy but we do vote and unvote.
    But like the governor for my state, Gov Scott, FL, he is going to submit an Opioid law at the last month of his career and doesn’t care because he can’t run again.
    There are many of us that have been sending letters, emails, calls and visits to our representatives but as you can see, it’s not making a dent.
    But yes, this has to stop!
    Why aren’t we allowed to have a good quality of life?!

    Lisa Davis Budzinski
    Central Pain Nerve Center .com

  45. Rocky46 at 7:44 am

    Great column but the sad thing is our lawmakers really don’t care! Its only a small percentage of us who write on a persistent basis. Until we can unite as one base in a non partisan basis and wield the power to vote them out of office, nothing we do will stop this run away freight train!

  46. Diane Succio at 7:42 am

    Yes, the DEA are scaring really Good Doctors. Instead of calling it a Heroin epidemic they are going after the Real Pain Patients.
    It’s bad enough to be looked at as a Junkie when filling our scripts.
    I’ve never wished my pain on anyone, but now I hope someone in the DEA comes down with Chronic Pain of any sort.

  47. Stephanie Scarbrough at 6:41 am

    WOW!! Truer words have never been spoken! Way to rally the troops!! Chronic pain warriors; unite!!

  48. Holly at 6:33 am

    Thank you Teri! So what can we do? I am being tortued!

  49. Mark Ibsen MD at 6:27 am

    Thanks Dr lewis.
    We are indeed done with agents who have 12 weeks of
    Training attacking doctors for the crime of caring for the sick.

  50. Richard A Lawhern, Ph.D. at 6:09 am

    Well said, Dr Lewis. I echo and support your sentiments.

    I will also be voicing those sentiments and others on Coast to Coast AM radio at 0100-0200 Pacific Time, November 27th, to an audience of millions of late night listeners served by 550 radio stations across the US. I will interview with George Knapp, a principal reporter for the Las Vegas Now television series tagged as #OurPain. We will cover a lot of territory: the difficulties of pain patients, big pharma, the real nature of America’s addiction crisis, and efforts to confront our government’s negligent ignorance by in-person lobbying.

    In no way to “hijack” your work or this article, Terri, I’d also like to build on it. I am helping to build an organization called “The Alliance for the Treatment of Intractable Pain”. By the end of this year we will have a permanent presence on Facebook pages and a dedicated website. In the meantime, a google search on that title will bring readers to an interim archive of both my own and others’ work on behalf of patients who share your concerns and desire for change.

    The ATIP mission is to put a human face on chronic pain. We are recruiting medical professionals, pain patients, and family members to lobby their State and Federal legislators and staffs in person, in their district offices. We want to present the case that the present draconian restrictions on treatment of pain are driving doctors out of pain management practice. Patients are lapsing into agony, disability, and sometimes death by suicide or medical collapse, because of denial of appropriate medical care by doctors afraid of losing their licenses. .

    A major first step in correcting this horrid state of affairs must be the immediate withdrawal of the CDC opioid prescription guidelines for a top to bottom rewrite to correct their many errors and misrepresentations. This step needs to be accompanied by the repeal of State laws restricting doctors from using opioid analgesics to aid patients for whom they are appropriate and almost always safe.

    Legislators can make both of these steps happen overnight, if they will get off their behinds and act. All it may take is a letter co-signed by multiple Representatives or Senators, to the Director of the CDC informing them that there will be no more appropriations until CDC retracts its guidelines and starts work on corrections.

    Thus I encourage readers to take Terri’s article to heart. Letter writing by constituents won’t count. Petitions won’t count. Appealing to legislators to ignore the bribes paid to them by insurance companies in campaign contributions won’t count. If we want to see change, we have to demand it face to face: either put yourself on the right side of these issues or YOU ARE GONE in the next election.

    It is time for large numbers of us to tell our legislators “ENOUGH ALREADY! STOP THE WAR AGAINST PAIN PATIENTS!”

  51. Patty Davidson at 5:09 am

    Thank you Terri. Very well stated! The time is now!

  52. James Hutchcroft at 4:51 am

    Great article. It’s been a battle that some days I win on others I lose.

    Chronic pain is my life, after my first back surgery at the age of 20 and 6 more followed in the next 32 years, not including the spinal stimulator implanted.

    I hate to say it, but pain clinics should be relabeled as Drug Rehab centers as that is how they all treat patients.

    My opioid use is significantly reduced since Medical Marijuana has become legal for pain management in MN. I only use at most 100mg of Tramadol daily.

    I still work, but my days are becoming numbered. This is a real tripping point for me, some days I feel as though I can no longer go on, then others I feel down right good. This is where the battle begins, I fight with myself to keep being a contributor to society and not a taker. For me this is my battle as it is how I see the world is judging me and my like.

    Ideation of suicide for long periods of time has been the norm. Although I have made progress with my therapist, I still have some recurring thoughts as I lose my abilities to enjoy the things that I consider worth living life for.

    I’m convinced that one day my end will be by my own hand.

    For now I’ll keep marching forward.

  53. Jessica at 3:41 am

    Best article yet! Terri , thanks for all you do! A chronic pain pt that’s fed up..

  54. Janice Snyder at 3:15 am

    I recently changed to Cigna Healthcare only to find that they are in the forefront of the charge to fix my addiction by limiting the number of Hydrocodone I take each month. I have been on the same dosage for years except when I was under the care of a pain management doctor who prescribed me percocet. I don’t snort my meds, inject my meds, sell my meds, run out before the month is up, nor buy more meds off the street. Nonetheless, Cigna has mandated that my pain will be managed by half the amount that is have been prescribed by a doctor.
    I feel like the pitiful Oliver Twist when he took his bowl up to the greedy headmaster and said, “Please, sir, I want some more.”

  55. Doc Anonymous at 3:14 am

    Over the years the DEA has been attacking the smaller practices that provided non-interventional pain care across the country. A small number of those were pill mills, but all bear the label wrongfully attached. There are few doctors left to treat pain patients, and Dr. Tennant is one of the few remaining. With the DEA’s March Across the US, like Sherman’s March through Georgia laying waste and destruction in its wake, the goal is to instill fear of the enforcer among all those in its path. But Sherman destroyed buildings and property; the DEA et.al. destroy lives of patients as well as doctors and impose unspeakable enhanced torture on the ultimate victims: the people who live in unending daily torturous pain and their care givers.

    And the people in pain and their doctors are not the ones who are flooding the streets with toxic poisons. Those poisons, in the DEA’s terminology, are “Illegally Manufactured Fentanyl” derivatives. According to the DEA, these IMF poisons come from China and are delivered by none other than the US Post Office. And the DEA has done precious little to stem the flow of these deadly poisons.

    And keep in mind that the people in pain and people who are dying of overdose are two distinct albeit overlapping populations. People with chronic pain are generally older while those who are overdosing are younger. A large proportion of chronic pain patients will have undergone some form of invasive treatment, however misguided. Some will have had their pain escalated by the shots. Eighty plus people have died from the steroids injected from contaminated steroids. Addicts and those who are overdosing will rarely have undergone invasive treatments aimed at pain control.

    So lets call this what it is using medical diagnoses and medical assessment. The entire scenario, with Dr. Forest Tennant as the latest target, can be medically described as a collosal conglomerate of “Factitious Disease Imposed on Another” (FDIA) as described in the DSM-V. Using the description in DSM-V, the doctors AND their pain patients are the victims, wrongfully and incorrectly (Factitiously) being labeled as drug dealers, addicts and the primary cause of the drug death epidemic. But pain patients and pain doctors and pharmacists have no access to the illegal poisons (IMFs) that killing too many Americans. In this way the doctors like Forest Tennant and the pain patients become the “Victims” with the factitiously imposed disease.

    In the same model the person or group with the diagnosis of imposing the factitious disease are the perpetrators. In the scenario of chronic pain, the Perpetrators, who have done absolutely NOTHING to further the understanding and management of chronic pain and its torture, are groups like the CDC, DEA, Police agencies, Groups like PROP, and many news outlets.

    Ironically their diversion of attention away from legitimate chronic pain management does great harm to the very group they are claiming to protect: those who are overdosing either due to addiction or recreational abuse of the IMFs. Even the term “overdose” is a misnomer in the presence of substances such as carfentanil because of its deadly potency. The failure of the DEA to control these deadly poisons also raises the risk level for innocent people from accidental exposure to mishandled toxins.

    So my fellows in the pain community, it is time to formally charge the DEA and the others in the anti-opioid consortium with what they are really doing: Perpetrating a colossal and deadly game of Factitious Disease Imposed on Another. The treatment, as set forth in DSM-V is legal protection of the victims. It is time to ask that the DEA and all of the anti-medicinal-opioid consortium be removed from any interference with legitimate pain care unless it is cleared by a special court.

    If left unchecked the anti-medicinal-opioid consortium will wreak more enhanced torture on the population of chronic pain patients. It will wreak increased death by suicide among the pain patients who cannot tolerate the enhanced torturous pain. AND it will result in further exponential deaths from IMFs flooding the market of addicts and recreational abusers as the flow of IMFs goes unchecked.

  56. Matthew Berkowitz at 3:09 am

    How dare they treat my mother like a criminal she is a cancer survivor she is 85 and they make her give urine is in DNA tests this is blown way out of control people are dying why are severe sufferers of pain being lumped in with drug addicts and drug seekers. LD’s new laws and ridiculous criteria is killing sick people this is unaccetable. Heroine use has risen due to severe pain sufferers being thrown off of they’re Payne programs for using medication for over 30 years which will Shirley leave then suffering with no quality-of-life

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