Chronic Pain Reaction to CNN Town Hall – and a Suggestion

Chronic Pain Reaction to CNN Town Hall – and a Suggestion

By Ed Coghlan

CNN’s Town Hall program “Prescription Addiction in America” had the National Pain Report email boxes buzzing on Thursday.

National Pain Report contributor Gracie Gean Bagosy Young was in the audience of the show that was moderated by Anderson Cooper and featured CNN’s Medical Editor Sanjay Gupta. As a chronic pain patient, she was hopeful that she could participate. While invited, she was not asked to speak.

“While the Town Hall brought up some valid points about addiction in America, they failed to adequately make the crucial distinction between addicts and chronic pain patients,” she said. “People with pain matter. We deserve fair and compassionate treatment. We also deserve a voice.”

Another frequent National Pain Report commenter, John Sandherr copied us on an email he sent the show producers this morning.

He wrote:

Your program reminded me of the “Reefer Madness “movie from the 50’s / one sided and a lot of the wrong information.

 What worries me the most was the absence of a voice of a Chronic Severe Pain patient. The show all but called for opiates to be outlawed in the U S.

 As a patient that suffers from severe long term pain my life has been made better by the use of pain medication.

 Returning to work full time, starting a new career, making more money and even more important, the medication allowed me to be a better husband a better father and now grandfather.

 Ten years on opiates and my dose has not increased but my condition is much worse. My doctors compare my pain to that of an end stage cancer patient but I will suffer much longer (and that’s Ok) as my condition eventually puts me in a wheel chair or confined to a bed.

 All I ask is that I be given the medicines I need to live my live with joy and hope.

 Yes, I have tried every other modality offered to me but none come close to the relief I get from opiates. If that single solution is taken from me and others like me, it would only start an even worse epidemic – mass suicide due to untreated pain.

 Yes, opiates are a problem but the media has taken the human factor out by blaming the pill and not the person that abuses the medicine.

 Prince is dead so BOOM the media is Jonny on the spot to blame the drug and not Prince.

 Because of your show Americans will think that anyone using opiates long term is a drug addict and pain patients will pay the price; untreated suffering due to fear and the wrong information.

 It’s sad to see CNN put a noose around the neck of the people that use opiates as prescribed, people that just want to suffer less and be useful.

 After eleven back operations and nearly 30 years of pain I believe I’m qualified to judge your program. I’m sorry you didn’t get the whole story.

If you want to follow John Sandherr’s lead and contact the producers, here are their email addresses. If you are going to contact them, don’t yell and scream…. suggest to them ways to tell the story that chronic pain patients say the media are missing. Having worked in the media, I know well that producers want story ideas, not invective.

Carrie.Stevenson@turner.com

Desiree.Adib@turner.com

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Authored by: Ed Coghlan

There are 28 comments for this article
  1. Kim Miller at 10:59 am

    Following is a copy of the email I sent to both producers. Everyone should express their feelings about this one-sided travesty of a “news” program:

    Upon watching your program entitled, “Prescription Addiction: Made in the USA”, I must express my disappointment in the lack of coverage regarding the plight of chronic pain patients. By continually concentrating media coverage on the addiction aspect of prescription opioids, your overall scope of the situation does not include the suffering of chronic pain patients.

    Although the US Pain Foundation was invited to the Town hall program, as were some patients from the chronic pain community, it appears they were never actually intended to be included in the discussion. When one patient attempted to tell her story, she was rudely interrupted and never allowed to finish it.

    CNN has a duty to the public to provide the complete picture of any story they are covering. Chronic pain patients are ignored time after time by reporters such as “Faith Karimi” (http://www.cnn.com/2016/04/28/health/what-are-opioids/index.html), who recently wrote an article online so filled with incorrect statistics and biased hype, it caused the chronic pain community to write comments on her Facebook page. These comments were promptly removed and the submitting “offenders” blocked from her site. My personal comment was in no way derogatory, mean-spirited, or inflammatory, but it was deleted and I was blocked from further commenting.

    Silencing the plight of 100 million Americans is not fair news coverage. Will CNN cover the other side of the story or continue to seek viewers/readers through hype that’s centered only on the disease of addiction in this country? Please feel free to contact me if you want the equally tragic story of pain patients committing suicide, going on hunger strikes, and losing all hope due to the overreaching laws and guidelines restricting the treatment of chronic pain patients.

    Sincerely,

    Kim Miller

  2. Em Raven at 6:59 am

    I guess I’m just one of the oddball cases that is due to doctor negligence but not from surgery. I have degenerative adult scoliosis and connective tissue disorder. This all could have been diminished/lessened the progression for some of it had I been taken seriously in my late teens/early 20s and given imaging for my extremely loose cervical and tspine. I’m lucky enough that simple tramadol works very well for me and lets (let) me have a pretty much full and productive life despite numerous complications like dysautonomia and POTS along with various heart issues. Now because a doctor that never met me and didn’t bother to look at my history decided to take me off my working med and put me on a cox2 I am back to being housebound unable to even do chores. I lost what little health I regained in the past year and a chance at a job. I’m mostly housebound. I’m not even 30. Because I’m thin doctors assume I can’t possibly have these issues even though my scoliosis is visible and my shoulder looks deformed. To the MD who posted drivel about pain = muscles and cure with yoga and acupuncture blah blah I suggest you talk to me or anyone suffering CRPS about the thousands of dollars of our own money we’ve spend on stuff like this. Also yoga and PT is well known to make connective tissue problems worse. What is it with doctors not being able to look at an individual with individual (and sometimes seemingly odd) symptoms, causes, and needs? This attitude literally just almost gave me a stroke. Thanks guys you’re SO helpful suddenly telling us what works no longer works based on outside sources, not our experiences, function, and improvements.

  3. James Webber at 2:40 pm

    I believe that the system is obviously broken, but I believe there should be more oversight at all levels. For instance, my lazy neighbor plays the “disabled” card but as I type this he is out fishing high as a kite on his prescription drugs, but my Iraq-veteran brother has to wait long lines in the VA with no results. So I believe that more should be done for our veterans and less for useless paycheck collectors.

  4. Sheryl Donnell at 10:39 pm

    Wow, and I bet you take insurance and charge on a sliding scale for those who can’t afford you or have no insurance too, right? I have been to an absolutely wonderful practicioner who did many of these things for me for lesser pain. Like from a car accident. However, once I developed Chronic Regional Pain Syndrome (CRPS ) after multiple surgeries related to shattering my leg, none of those things TOUCHED my pain. So, Doctor, you really need to know that some pain may respond (less severe acute pain ), but chronic intractable pain may not. I have literally tried everything you have suggested, plus all non medicine based treatments. I utilize many of both IN ADDITION to my prescription medication. And I still live at a base line pain level of a 7. Today, it is almost a 9. I have been sitting with constant tears rolling down my fave from pain, debating a trip to the ER or trying to hold out to tomorrow for my doctors office. So, doctor, please stop trying to sound as if you are superior to the doctors who do help us. They aren’t money seeking. Mine rakes Medicare and I don’t pay a nickel out of pocket. Can you say the same? Doctors like you who give false promises often ca use patients to lose everything they own seeking that Golden Challis of pain relief.

  5. misrox at 8:31 pm

    When doctors mess up surgeries and we are left for a lifetime of suffering it is the doctors that should have to be responsible for treating the suffering and have to manage the pain meds …. pain management doctors and family doctors are taking the heat for a surgeons mistakes … yes a lot of people are being treated because of accidents , births defects …but i would guess a huge majority are botched surgeries …. maybe with all the botched patient surgeries ,surgeons should have to worry along with pain management and family doctors
    why is it some areas have large numbers of pain patients the stats would be very interesting ?….
    I know personally 3 women besides myself who have long term complications from neck surgery permanent nerve damage and are on pain management for life..
    so to the MD who posted muscles are the cause I think maybe you should reconsider your choice of career … I am on very low dose and have only been getting worse …
    tidal wave of narcotic deaths are from people that abuse narcotics not responsible people who take pain meds that have been prescribed to them …unless they take them to commit suicide for fear they will be taken away and want a way out because they do not want to suffer
    A tidal wave of Narcotic deaths
    a true story from my area a 30 year old woman has been caught and jailed 3 times breaking into-walking into elderly people’s houses and Cancer patient’s houses to steal their pain meds …
    Nurses who steal pain meds from hospitals , why are hospitals slapping these nurses wrists and not putting them in prison
    .. family members and friends that steal pain meds and become hooked … on pain meds then move onto heroin when supply gets cut off …. it is those people who are screwing it up for the Pain patient community
    Pain patients that self medicate with heroin when their pain management get ripped out from under them or gets cut back so much they would rather die …

  6. Sheldon Nierman at 3:23 pm

    Please write to your congessmen and any media outlook that will listen. Its the only way i can see and its gonna take all who are suffering and the family members who suffer do to chronic pain. Its a difficult road and nearly impossible for those who arent suffering and cant see our suffering to even understand much less have the compassion to change and stop legislation that overlooks us.

  7. Cathy at 12:49 pm

    I have a daughter that has had 9 surgeries. She has been cut up, down, sideways, front and back. And the doctor’s do not have much to offer in a way of fixing her spine. And now they keep switching her meds. I love my daughter and cannot even hug her because it causes pain. It has affected every aspect of her life. Now you want her to be in constant pain. NO

  8. Stephen S. Rodrigues, MD at 8:21 am

    Adulterated treatments done in haste on an assembly line manner is directly related to what happened in the 60s.

    The main reason why everyone is bewildered confused and still in pain is because in the 60s a doctors decided to change the pain treatment paradigm from for-patients to for profits. They opened this Pandora’s box and we are all feeling and living in the fallout.

    This what you would have received in the 60-80s performed by experts, master and people who love what they do. Love what they do means = lots of TLC.

    Pain in the body we all get from life, living and collisions can only be healed from the inside. These are many of the best ways to assist the natural forces from within the true healer of diseases -Hipp. THINK SIMULATION 1) You must engage in a self care program; wellness, sleep, yoga, range of motion exercises, traction, inversion, diet, stress management. 2) Outside the skin; manual labor into muscles and connective tissues stimulation. ie Scrambler Therapy, E-stim, Massage, spinal adjustments, formal traction, Barns unwinding, formalized range of motion exercises and active tissue release. 3) Inside the muscle; dry needling, Acupuncture, ah-shi acupuncture, thin wire needle stimulation as per GunnIMS. 4) Inside the muscle; hypodermic needle stimulation as per Travell, Hackett or Rachlin injections.

    ALL of these treatments, I’ve learned over 18 years that I do in my office me and the patient with lots of TLC. This way I’m here simply to help.

    A shot is not a shot. The old school shot was not to put in medicine. It was to stimulate healing with the tool. The solution was simple to cool down the pain of the intramuscular stimulation.

    The shots today are wham bam thank you, they put in medicine. The medicine cannot touch this pain pathology. A waste of your time. NOT a waste for the providers who get 1000-5000 per a type. They get $50 for the perfectly designed shot. Profits guide decisions. Especially when everyone is doing them and not one cares about your outcome.

    Today you do not have access to the best and most effective. = they took them away.

    You do not have access to the best providers = they are not teaching these disciplines and techniques anymore.

    You do not have all of them in the same session = they split them all up and move them into distant locations.

    You can not pay for them all = they took them away and are making you pay extra. This is how business work, they profit and you lose. Winners most alway trample over losers.(you and I).

    You do not understand them = all of the education is in for-profits and wall street.
    These for-profiteers have handed off this setup to be governed, regulated and enforced by — guess who? Our Federal State and Local government and subcontractors. Governments do not care about a citizen, this means you and I. This for-profiteers sophisticatedly placed blocks and barrier in policy to keep you (us all) (me too) imprisoned and enslaved.

    Complex deceptive scheme.
    Simplistic natural law of healing.
    Monumental barriers.
    Focus on a single aspect ie painkiller and they win by divid and rule.
    Focus on the entire Pandora’s box full of issues and we will more likely win.
    Yes, we.
    Funny how people want to kill their messengers. This is just the way it is.

  9. Sheryl Donnell at 8:54 pm

    Well. Sure. That sounds great except we are in chronic pain and can’t be sure we will feel good enough to get out there and rally and picket and be visible can we? That’s part of why shows like this are even more hurtful to us. We can’t get out and fight for ourselves like other groups, especially when pain meds are being taken away more and more so we are becoming sicker and sicker. It is sick the medical community is doing this to.a population so unable to help itself.

  10. MAGGI at 6:05 pm

    I TOO SUFFER FROM CHRONIC PAIN. I LIVE IN NY, WHERE THE AMOUNT OF PAIN MEDICINE IS BEING CUT AND DOCTORS ARE LEAVING THE STATE. MY PAIN MANGEMENT OFFICE CLOSED, I AM OUT IN THE COLD. ONE LARGE PAIN MANGEMRNT GROUP THAT PRACTICED HERE IS CLOSED AND IS BEING INVESTIGATED. IT CARED FOR OVER 12 THOUSAND PATIENTS. THEY ARE ALL LOOKING FOR OTHER DOCTORS. CAN YOU IMAGIN HOW HARD IT IS TO GET ANOTHE PAIN DOCTOR HERE. I TRULY DO NOT KNOW WHAT TO DO. MY OXYCONTIN WAS CUT FROM 45MG A DAY TO 10MG A DAY. MY FENTYNAL WAS CUT FROM 75 TO 50. THESE AMOUNTS DO NOTHING FOR ME. WHAT AM I TO DO? I DO NOT KNOW IF I SHOULD BE WEENED OFF AT THIS POINT, I AM FIGHTING AGANIST THE MASSES HERE. IT IS A SHAME THAT BEFORE THEY BUSTED THAT DOCTOR, THEY DID NOT HAVE A PLAN FOR THE PATIENCE OF HIS PRACTICE. I JUST DO NOT KNOW WHAT TO DO.

  11. Diana at 2:34 pm

    Thank you for writing this and giving the names of the producers. I’m a chronic pain patient and was appalled at this town hall, especially Anderson Cooper joking about wanting more opioids after taking one after surgery. I sent an email urging them to cover chronic pain patients using opioids for pain relief and to connect with the chronic pain community such as The National Pain Report.

  12. Debbie Boerio at 1:33 pm

    This was emailed to the producers today. It felt good, maybe they’ll listen someday…before it’s too late!:

    I’m writing in response to your program “Prescription Addiction in America”. Although I agree with some of your points I feel the show was entirely one-sided & should have included some interviews or opinions from real chronic pain patients. There are hundreds of thousands of us in this country that take our medication exactly as prescribed & count on these pills to have the quality of life you may take for granted. I’ve been on opiates for a number of years & I’m trying to live the best life that I can. I’d like to see another show,a true”Town Hall”, that would include a fair representation of this issue. Just remember,you may end up like us someday but you may have to suffer without the only help that we have today

  13. david becker at 1:18 pm

    If people in pain wish to be heard- they need to ban together, create and inspiring vision and plan and be willing to spend money and time changing our institutuions that control pain care. Complaining about the weather isnt going to do anything. Saying you need certain meds or are having difficulty with your care- again not enough to make change happen in pain care. More then that needs to be done- people in pain need to become a viable force economically, politically, and morally. Right now people in pain dont have what it takes to change pain care in America.

  14. Sheldon at 9:59 am

    It is very obvious that you have not had discs blow in your back which causes pain like i could have never imagined or conceived until it happened to me. When your in a tremendous amount of pain and your pain is so bad you cant do pt and if you do it makes it worse. You will do whatever it takes to get out of pain including surgery and when surgery dont help and every other procedure dont work and you find a medication that does then if your in enough pain you will try it and when that opiod helps to reduce your pain to a tollerable level then what do you have left. When i realized i would depend on a medication to keep me in this world i knew when they took that medication away life would be over. So as far as nerves and skelton cant cause pain. I definetly disagree because im living it. I hope you can do what most cant as a doctor and listen and know there are situations that cause a tremendous amount of pain and all the pt in the world dont help. I hope as a doctor you can have more compassion and understand there are situation that the medical field dont understand and chronic pain is one thats very real. i havent losed everything i loved in my life because i enjoy laying around watching my kids suffer and lose my wife that dont understand. People arent taking their own lives because its fake. Please as hard as it is to understand, please know people are suffering from severe pain whether you can see the reason on xrays or other means or not. Ive always said its gonna be the hardest thing for people in general to understand but if my leg was half blown off and mangled it might be a little easier. It seems im fighting a loseing battle that i will fight until i make a difference or become a statistic. I just pray you have compassion and understand for others and have trust when all the signs show you suffering is obvious or not. Please listen

  15. Silvia at 9:43 pm

    People in chronic pain cannot get meds any more, I can barley walk was on 40 mgs of methadone, and am now being cut off, I have a rod, pin’s screws in my back, can barley do house work like folding laundry, I now will be unable to even do this for my family, it was a botched surgey,I am bent forward, I live upstairs, I now will not be able to leave the house at all I will be sitting crying and unable to move, I may as well kill myself, I won’t have a reason to go on.

  16. Renee Mace at 6:56 pm

    I to am a chronic pain sufferer who is on 1/3 the amount of my pain medication since last January when Washington state applied the CDC guidelines on us. I suffer from Central Pain Syndrome which will gets worse every year, I live on a 7 on the pain scale. Before the feds took away my wonderful Pain Doctors pain management practice, I lived on a 4 pain scale with some flare ups, but now it’s every single minute of the day. Everybody wrote about the outrage as I would have but my question to CNN is Why is it bad to disagree with how a person chooses to live there life with a gay partner as there spouse, or that I should feel outraged at a southern state not allowing transgendered people sharing a bathroom with a men’s room or women’s room if the where born the opposite? Today I would be considered an evil person if I think that that lifestyle is wrong, I believe in the Bible and if the Bible says it’s wrong, then I say it’s wrong. But that’s my opinion and I am not going to go out and ruin or terrorize other people because I disagree with there lifestyle. So my question is, why are you attacking my only way to have a life. I suffer so bad that my labor pains where easier because I had a few minutes of relief between contractions. Also everyone never questioned me if I was in pain, they knew I was while giving birth. But as a pain sufferer, I am a drug seeker or drug addict, and I need to just get over it by (mind over matter) and lessen my pain medications after I to have tried every kind of treatment, shots, lotions, creams, therapies, you name I tried it. I do not drink, I do not smoke, I am considered by my friends and family as a goody two shoes and yet because pain is invisible and you can’t see it, I must be an addict and I need complete strangers to tell me that I don’t need these opiates or to have the wonderful doctor I had because they took away his license to prescribe pain medication, did you read that, not DRUGS, but pain medications. CNN, CDC and everyone else should be thinking how you have ruined so many lives because of your ignorance. Shouldn’t you be helping people instead of ruining their lives. I live in severe throbbing chronic pain and I consider myself as a nice person who tries to understand that every person is different then me and that I should not judge them, at least that’s what Jesus told us, yet you have judged me and all other chronic pain people in one huge lump, we are pain pill seekers, my answer to that is Yes I am, if I have type I diabetes, I would be an insulin seeker, if I had a bad heart I would be a heart medication seeker, do you get the point?

  17. Doug at 3:34 pm

    I’ve been none stop writing since the first broadcast to both producers and commenting on their Facebook page. As I have read the letters here I an honestly say that my letters, while not in the exact wording, pretty much matches all of yours. I have also posted both producer email address on the chronic pain rights support group on Facebook and know that many of my fellow chronic pain members have also written. I asked them to be professional but informative in their letters. I had a huge response from everyone.
    Several of us also managed to stifle antiopiate people making derogatory comments against our fellow pain sufferers. We did this by writing facts and true percentages. It turns out that there were a lot more chronic painers stating facts then there were opiophobics regurgitating CDC lies.
    I just hope that all this does something for our cause.

  18. Pharmacist Steve at 3:15 pm

    There is becoming less and less distinction between chronic pain pts and those suffering from addictive personality disorder and abusing some substance… Both groups have a chronic health condition and our system and our society will not recognize substance abuse as a mental health illness and is determining that those with chronic pain and needing opiates to help them optimize their quality of life… are also “suffering” from a “opiate use disorder”… just like those with an addictive personality disorder..
    So both groups suffer from a chronic illness and both are being denied appropriate care/therapy. IMO.. the more those is the chronic pain community keep talking about us vs them.. the more that they are feeding the DEA and many in the media agenda. Those who are abusing some substance are doing something that our society considers ILLEGAL.. so they need to stay off the radar and INVISIBLE. They are not in the position to FIGHT for their rights to appropriate healthcare… Perhaps if the chronic pain community fought for all people with subjective diseases get appropriate healthcare… those in the chronic pain community might come out better than the direction that they are now headed

  19. Stephen Rodrigues, MD at 1:21 pm

    Want out of pain and get off of your painkillers?
    There is a safe way out of pain. It is within your ability but will not be easy. From my view, you will have to HELP yourself out of pain. I fear that no one else can because no one else seems to know how, so they do not know how to show you.

    This is exactly related to this story.
    Wondering why there is a tidal wave of narcotic deaths??

    There are a few errors that you all are being taught by a series of missteps dating back 100 years. These errors are being used as true. These errors have been embedded into our consciousness as the best option but in reality it cannot be true. Healthcare has adapted a “standard of care” but goes against the universal laws of biology as how the human body works.

    These accepted standard of care option being used today do not fit into reality. The proof is what you are witnessing – simply looking around you.
    All of these do not work as predicted:
    Joint replacements for leg pain.
    Craniology for head pain.
    Back surgery for spinal pain.
    Medications for long-term pain.
    NSAIDs for long-term pain.
    Antiseizure meds for long-term pain.
    Interventional pain procedures for long-term pain.

    All of these options do nothing intentional to touch the exact pain pathology – PLUS they leave you habituated, susceptible to ulcerations and bleeding, handicapped, disabled, confused, bewildered, lacking, disappointed, abandoned and alone. These options breach the all the universal laws of the universe as to how to heal the body. So they cannot work if they do not match with the laws of biology.

    The universal laws of nature and biology dictates:
    The skeleton, nerves or blood cannot cause or be the location of long-term pain.
    The muscular system is the only logical organ system and location for long-term pain.
    The ONLY way to treat the pain that is embedded in the muscles is with physical therapy.

    Physical Therapy has alway been the go to medicine used by Hippocrates and Jesus.
    PT, the only treatment for pain in the body, was actually perfected in the middle of the last century. Perfected means a complete and validated: Problem + Solution = resolution equation.

    All of these are actually Physical Therapy Options because they all address the soft tissues and muscles. These options should not be used in isolation or piecemealed. They work best if they are used in a daily weekly wellness proactive recipe.
    Self-care: massages, aerobic exercise program, Tai Chi and/or Yoga. Stretching … all of the major joint areas.
    Assisted-care: Massage, spinal adjustments, Chiropractic care.
    Needling-care: Acupuncture, dry needling, trigger point work with needling, muscle tissue stimulation with filament and hypodermic needling.
    If you decide not to apply PT then nature can do nothing for you. Nature needs your help because you are a team.
    Godspeed.

  20. Eve at 11:47 am

    Thank you for writing your story. It mimics my story.

  21. Barb at 9:55 am

    Barb
    I’m one of those 4 percent patients that the government has touched. My Dr. has cut me off all my opioids after being on them for 25 years. It’s not because I was doing anything wrong, it’s because the dr go scared because the DEA came in because one of the dr in his practice was doing something wrong.
    Well now I have to find a specialist to write my opioids. Found one but he would only write half of what I was on. Pain every day is around 6. I guess it’s better than a 10. But when I get a migraine on top of all this pain I have to go to the ER and that is degrading. Dr.comes in with an attitude to start with wondering why are you on so much medication? Then the next sentence out of his mouth is “we don’t give out narcotics in this ER”. After waiting 6 hours in the ER, then 2 hours on the dr. NOTHING gets accomplished. Still in great pain, so bad you just want to die. So I go home suffer another 18 hours, go back to the same ER, wait 10 minutes get seen by a different Dr. and he gives me narcotics, steroids, promethazine, and a muscle relaxer, and says I’m dehydrated and hydrates me up and feeling better in four hours. Now why couldn’t the 1st Dr done that? America is messed up.

  22. Sheldon at 9:32 am

    IS ANYONE LISTENING
    If i was a dog i would have an option on whether i could have mediction to live a less painful life and if not I could be put down and they dont have a way to communicate but since im human i cant get the medication that gives my children part of there father and some sort of life and i can communicate my suffering. When are we going to give doctors there right to treat patients without repercussions and in a doctors office i was recently in a undercover DEA agent. Thats absolutly rediculous

  23. Sheryl Donnell at 8:57 am

    My email to the producers:

    I am appalled at your show last night and ask you to immediately schedule another show that clearly shows the other side of the chronic pain issue.

    People, especially in the last few years in this country, are being treated like drug addicts, when we have terribly painful well documented chronic pain conditions and last night you led the charge to help that discrimination continue.

    I am not an addict. I am a patient. I have been a patient for over 10 years with a disabling pain condition. I have tried EVERY kind of therapy known to science and many that science laughs at. I have tried everything my doctors, who are top-notch pain management doctors at Rush University in Chicago, have asked of me. I have a spinal cord stimulator (actually I’m on my 2nd), and soon I will be replacing my internal pain pump that I chose to help limit the amount of opioids I had to take over 6 years ago (about 1/100th of what I had to take orally). But, even with that, and all my acupuncture, physical therapy, regular therapy, self awareness, biofeedback, self distraction techniques, injections of every sort,you name it, it still wasn’t enough to keep me from being in constant unremitting pain with horrific swelling, and discoloration of my limb and also being unable to stand or walk because of my back unless we added in multiple medications including breakthrough opioids. And even with all of this, most of the time, I can’t sleep longer than 2 hours at a time before pain demands I wake up.

    I work harder than you will ever know to slap a smile on my face to pretend I’m ok (the Mayo Clinics recommendation, so I don’t dwell and catastrophize my illness), no moaning or groaning allowed they said. Try doing that when your pain is literally off the charts. I tried really hard on the last two but found I was staying away from people and totaling isolating myself in order to do that. Now, I groan, but softly and my spouse is hard of hearing so it’s not so bad.

    Sound like fun? Do you think I’m faking? Who in their right mind would go thru the surgeries I have, have these machines implanted to help my pain, pretend I’m fine and smile through the pain (except with fellow sufferers who get it) while I live at a base pain level of a 7 or 8, and most days hit a 9 by bedtime. Yes, I said 9. Right now my pain is so bad as I write this but I dare not take my pain meds now because I won’t have them later when I really need them. Because, God forbid any patient ask for an increase in the last few years. Every single patient I know who has, has promptly been put on tapering doses and told they need to stop taking the one medication that helps.

    Why? The CDC has used skewed data in their war on drugs. Their deaths by opioids include all deaths by opioids, Heroin, even including suicides. If it were only accidental opioid deaths, the number would be much much lower.

    And what about that number. What is happening to those addicts who can’t get opioids? They.switched to an ever increasing more dangerous strain of Heroin laced with Chinese Fentynl and they are now dying even more rapidly.

    So, the law of unintended consequences has real patients hurting and being even more stigmatized, and.committing suicide in increasing numbers because they can’t imagine their lives in this kind of pain while addicts aren’t getting treatment, they are dying more and more than ever from much more dangerous street drugs.

    How can any sane person support these plans?

  24. Ed Stines at 8:21 am

    Ed Coghlan, I read your story and I could not be more proud of a fellow sufferer and the eloquent way you have described our suffering.

    I am at the unfortunate end of what was supposed to be a routine knee replacement, fast forward to today and I have had a total of three replacement surgeries in 16 months because the first was only partial and did not fix the problem. The second surgery was a full replacement which was supposed to satisfy all the symptoms that was not addressed by the partial replacement. The third surgery was a revision of the previous two and entailed the removal of the previous implants and the installation of a longer implant reaching about 18″ from tip to tip with an artificial knee with the original patella in the middle.

    After the third surgery which is nothing to sneeze at, my leg was so swollen and red that my home nurse thought we should contact my orthopedic surgeon since it did not look healthy. He saw me in his office immediately and after examining the leg, told me to go to Emergency Admittance at the hospital where he would meet me. A close friend took me to the hospital and the next thing I knew, I woke up in a room in the High Trauma section of the hospital six days later. I cannot remember those six days and I was told that I was taken in a room where my screams indicated the state I was in. I don’t know what was done nor do I remember any of the events.

    I spent four weeks in that high trauma room with 24 hour antibiotic IV administered. Eventually I was told by my doctor that they had to do what was being done since the alternative would have been catastrophic. I still don’t know it would have been however I concluded that there was an infection during surgery and the treatment was to prevent amputation. Those four weeks were not very pleasant, to say the least. After I was discharged, I experienced about ten days of PTSD and unbearable pain. Just like in the hospital, I was treated with opioids, physical therapy, and anti-inflammatory meds.

    My pain just kept getting worse and I was told that it was normal and would probably last for another three or six months while the revision healed. Six months later, I was still in terrible pain, and eventually my OS suggested we go to see a Pain Management Practitioner (PMP). After examination, he determined that I had CRPS (RSD) and that a nerve was probably damaged. He recommended opioids of the highest order after I signed a “contract” stating my participation in a program where I would not abuse the opioids and subject to random urine tests in order to get refills. If that was what it took to get relief from the horrendous pain and I could get back to a half decent life, I was quite willing. He also suggested nerve blocks where I would have meds injected in my spine in order to stop the nerves sending pain signals to my brain.

    We did two or three of these blocks over time however the relief only lasted a couple of days. The opioids were the only thing that seem to give me some pain relief but they had their problems too since the side effects were really uncomfortable. He said my body would adjust to it and the side effects would go away. The random urine tests continued but found nothing unusual since I don’t smoke, I don’t drink alcohol and I don’t do recreational drugs.

    Over time, the pain persisted and so did the nerve blocks. Eventually we found a combination of meds which have kept the pain under control with the use of breakthrough meds to control when the extended release meds didn’t. I would love to get my life back where I could do without meds and I could participate in daily living. However, CRPS is a progressive debilitating nerve disorder for which there is no cure. I was offered a spinal cord stimulator (SCS) where a device is implanted in your back near the spinal cord and a battery power provides a vibration on the spinal cord thus interrupting the nerve pain signals to the brain. I refused since I know of many sufferers where it did not work. I thought I had enough implants in me as it is, no more. So, back to the meds which do provide some probably enough relief to live less than a half decent life.

    If you have never heard of CRPS, which a lot of people including doctors haven’t, please do a google search and see the nightmare in which we are trying to live. We are not drug abusers and we don’t want to even take the drugs however, being treated as addicts is only making a life of hell even worse. In retrospect, I think that if my OS and others were trained and well aware of CRPS/RSD, maybe my diagnosis could have been caught in time and treatment would be different. I am in Support Groups and we are working real hard to get the word out and bring awareness to this most horrible nightmare.

    I have read where this disease is called the “suicide disease” since it doesn’t kill per se but to live through the pain, which is rated as number one on the McGill Pain Index, without any relief would be impossible for most people hence the monikor, I don’t want to be one of them.

  25. Loretta Holscher at 7:58 am

    Dear Ms Stevenson,

    I have a rare chronic pain disorder and have sought treatment in 4 different states with a handful of specialists for help with Pudendal Neuralgia. The long and short of it, is that I am not able to sit without pain. I have been forced to quit a job that I love, forced out of my home of 30 years, because I could no longer climb steps and still have not found a “cure”.

    For you to put people that suffer with chronic pain, which in itself is a disease, in the category of drug abusers, is prejudice against the millions of us who endure every day just barely being able to cope. You may want to include those who suffer in your conversations. You are not helping anyone.

    Loretta Holscher
    Ocala, FL

  26. Martha Arntson at 6:52 am

    Ed Coghlan, I so agree with what you wrote. I started to watch the CNN special, but, Dr. Gupta is not my favorite as far as this subject goes, as well as any Dr. that is a “Media Doctor”. The death of Prince, has had a slingshot effect on everyone who uses pain medications. The Obama Administration jumped right in, without even knowing what the Toxicology reports will reveal, because he wants to leave a Legacy of some sort, and he has found it, the War on Pain Medications. He has not only started the ball rolling with the CDC and the DEA’s new Guidelines, he has now sped it up so that it has already affected my life, as well as yours (as you wrote), and thousands of others. I have already been to see my Pain Management Doctor, (every month) since the Guidelines came into play. First they reduced the quantity of my medication, then completely took me off this month. I was left with a Butrans Patch, muscle relaxers (which I cannot take during the day) and that’s about it. I am proactive in my care, I had requested a lower dose Opiate back in November, 2015, and I adapted to that dose. I am appalled at how these “Town Halls” they are doing all over the Media, have the Doctors of Pain Management Offices (well trained Doctors I might add, they SPECIALIZE in this), afraid to prescribe anymore. It only took about 5 months for this supposed “Guideline” to take effect all over the Country. Thanks for your Post on this subject, unfortunately until we can all be in one place at one time to fight back at the Government, we are stuck using social media or forums such as this to be heard.

  27. Cathy M at 6:45 am

    This was what I sent to the producers yesterday:

    I’m writing in response to the Town Hall that you produced on the opioid controversy. Anderson Cooper et al made a very lopsided presentation, acting as if opioids are intensely addicting (did you know that the actual addiction rate for chronic pain patients is 0.01-4%?? That’s hardly a huge risk!) and wildly over-prescribed. They have been prescribed for chronic pain and improved hundreds of thousands of lives but suddenly the CDC and DEA are reversing course, leaving responsible medication users without essential relief from pain! Have you researched the real numbers, rather than taking the sound bites whole? In Oregon, for example, there were 500 overdoses in 2014 (that includes street heroin) but also there are 800,000 chronic pain sufferers! There are 100 million US chronic pain sufferers. So why are the far smaller subset getting all the attention, when so many of us suffer and do not get sufficient treatment?

    Did you read the CDC guidelines all the way through? I did – and there have been NO STUDIES done about the benefits of opioids for chronic pain (that’s on page 9 of the final document) – so what does that tell us? They’re not looking, so they can’t find it! The CDC issued these guidelines based on little or no evidence (and they admit that in their own fine print). It’s media’s job to uncover these facts and to give a BALANCED coverage of this issue – your town hall was not! It was 3/4’s (at least) anti- and only one brave woman allowed to say that she’d been taking the medicines responsibly for years. As have I – no addiction, no problems… in fact, as she said, the medication allows me to have a functional life that pain would totally disrupt.

    I am a retired mental health therapist, and I’ve worked with addicted teens – it’s a tragedy and I’m not minimizing it. But it is a SMALL subset compared with those who suffer debilitating pain daily! Decades before I got my Masters, I got a BA in communication, so I’m versed in the responsibilities of journalism – I believe you dropped the ball on this one, and BTW, your “clips” online are sensational soundbites and again are skewed. PLEASE do a real, balanced program on the problem of chronic pain. Visit the Inspire forums, The National Pain Report and the US Pain Foundation to read for yourself the suffering that has happened because these short-sighted “guidelines” (which are being implemented as rules by medical systems) do not provide adequate pain treatment, nor do they allow patients to demonstrate that they take the medicine responsibly and that it makes their lives more (not less) functional.

    This will become a huge crisis very soon, as hundreds of thousands in adequately treated pain sufferers consider death a preferable alternative to intense suffering. We need the media’s voice to prevent this.

  28. Kris at 4:49 am

    I wrote to both of the CNN producers and I know a few more people that already have to. this is such an outrage . With out pain management, Which by the way I am stuck on my couch because I already am not given proper pain management but with out any…I would be in ER every day….locked up in a mental hospital or Dead from suicide because I could not take the pain…I do hope if they take away pain medication …that they replace it with making something else legal to help us and having insurance cover the cost of it….I do not know if that would help me but I keep praying that marijuana become legal in all states for all uses just because I am scared to death that I can already not get off my couch. And NO I do not know if that would even help me because it is not legal where I live so I do not try it . because I do not break the law…just like I do not abuse my baby norco 5-325 pain pills I have been on for years and my pain management doctor will not raise it to get me off my couch because he says I am to young 45 yrs young.

    Well I feel I am too young to be stuck on my couch with heat or ice between my legs too..I would like to get off my couch and go do something….I am already disabled and I have been since the age of 38 with just 3 of my painful conditions back than …now I can list a whole host of new ones too…..

    So as I search for better pain management , They are what?? making it worse?? or even possibly taking it away? I hear people on my support group for interstitial cystitis getting scared , Asking what do we do……I say pray….we mush pray now that GOD is going to take care of us and we are going to be Heard …But you must write in and our voices must be hear loud and clear and all at once so I told them please write…and they are on it.

    thanks for sharing