The Opioid Debacle

The Opioid Debacle

By Suzanne Stewart

Many chronic pain patients, like myself, have legitimate concerns that we didn’t have to deal with a few years ago. Just prior to this Opioid debacle that has occurred in these past few years, we had enough to worry about due to our pain issues.  We worry about finding good and trustworthy physicians, pharmacies that have our best interest in mind, tests that we endure and then pay for; among other things. We have to find a way to arrive at our appointments, possibly find someone to go with us and find Dr.’s willing to help relieve our pain. We just need someone to listen to our ideas, concerns and take our feelings into consideration at the same time. These days we have so much more on our plates and it is adding worry, pain and an increase in suicide to the list.

Suzanne Stewart

There are rumors flying on Twitter, Facebook and in the news media, that we have an “Opioid epidemic” in our midst.  Lawmakers and those who don’t have a clue what daily life is like for the chronic pain patient; have just blindly accepted this hype.  I totally agree that deaths from overdose of Heroin and other “street drugs” are happening. It is real and people are dying. I do know that the true “drug addicts” are mixing and/or changing some very helpful pain medications, with illegal substances and making more dangerous drugs that kill.  But taking the small amount of relief away from pain patients is not going to fix the problem. The CDC, FDA, lawmakers and  the Physicians who “don’t have a clue about chronic pain from a personal standpoint”; are taking away truly needed medications that lessen our pain on a daily basis. The chronic pain patient deserves to have some semblance of “normal” life. When they take away our pain medications, they are putting us back into our beds; where we are “sick” persons just waiting for relief.  Hoping and waiting for someone to help us “fix” this Opioid conundrum that is happening around us.

The problem that I have found during my research, is that these groups of people that have “power”; meaning the CDC, FDA etc.; are “lumping together” true chronic pain patients with the average drug addicts. We are not one in the same!  Apples are not oranges; just because both are called “fruits”. Dogs are not cats just because they are both animals. People who abuse drugs and chronic pain patients are not one in the same; just because both are human beings that need Opioids in order to live.  The craziness will not end and drug abuse problems and/or deaths will not be over, by taking Opioids from the true pain patients. The chronic pain community has been living in fear and agony since the new guidelines started. What I’m talking about is a real public health issue that is being made worse and not getting solved.  Denying the chronic pain community the one thing that may give us some small quality of life, is definitely not going to fix anything.

What I have noticed after speaking with a Governor’s secretary, a Senator and officials within my community, is that they don’t realize that there’s a difference between being an addict and being dependent physically. I heard a Senator say that she never thought about how a chronic pain patient may be physically dependent but not be “addicted” or crave the pain medications. They don’t truly understand that Opioids are sometimes the only choice and last resort. Some of us are not candidates for other treatment modalities. Frankly, there are others who just don’t want or cannot have another surgery that might increase pain and medical issues. I was told by one Senator, that we need to be a voice.  They need us to make phone calls, write letters and these kinds of articles. We need them to really listen and then make real changes.

The drug addict needs and craves their drug of choice in order to function. They get a “high” from taking drugs. They mix drugs and change medication from its original form sometimes, in order to get that “high” . A drug addict lives for their daily  “fix”.  The chronic pain patient, on the other hand, does not get a “high” from Opioids. We take prescribed pain medications in order to live some sort of life outside of our beds. We don’t live for the pain medications. We take them in order to have a life with lessened pain. The Opioids give a slightly higher quality of life to some of us and the unbending hand of the Government is slowly taking this quality of life away from us.

I totally agree, that Opioids should not always be the first drug of choice for chronic pain. There are other modalities to start with. But in the end, if this is the only treatment that works for certain people with chronic pain conditions; then these patients should be able to have it. The chronic pain patient should be allowed to live without feeling like a  criminal or as though we are “bad” or “flawed” people. We also should not have to take a slew of lesser medications in order to “try and fail” them before getting what a board certified pain Dr. may prescribe as first choice if his /her hands weren’t “tied”. The persons with power to do something about this debacle are continuing to deny tens of thousands of chronic pain patients the only treatment that may help lessen their pain, our pain, my pain.  They are holding us hostage to a life of agony and they need to be informed. Those persons who have the power to help chronic pain patients with this confused issue, are listening to  misinformation. They are looking at skewed  and manipulated data.  They are basing their choices, ideas and guidelines on poor medical analysis and data.

The guidelines for the use of Opioids in the medical setting should be changed immediately. Those persons on the committees who wrote these newer guidelines were those who have a monetary stake in getting rid of these medications. By this, I mean those who own other forms of treatment centers. They are also the “Prop” Dr.’s who have only one point of view and it’s not the same point of view as those who truly know what it’s like to live with daily chronic pain. The initial’s “PROP” stands for “Physicians for Responsible Opioid prescribing”.  But they don’t really approve of any kind of prescriptions for pain relief. Those who wrote the current guidelines, want Opioids eliminated for the afore mentioned monetary reasons and due to the propaganda surrounding celebrities deaths from overdose.  In the celebrity cases, and many other high profile and even low profile deaths from overdose; there were other medications and street drugs mixed in with the Opioids. That is truly how those persons ended up dead.

The guidelines for the use of Opioids with chronic pain patients should be withdrawn now! They should be rewritten by a group that consists of board certified physicians who have true experience with chronic pain patients. Better yet, add some physicians who actually experience chronic pain themselves.  Excluded in the group to rewrite the guidelines, should be anyone with money to gain from getting rid of Opioid medications. Let’s get real! People die from NSAIDS! In fact, I’m not allowed to take them because of my chronic renal disease. Others die from Liver issues from taking too much Tylenol.

At one point, there was a group of U.S. Senators that introduced legislation to  put a federal tax on all Opioid medications! It was called the “Budgeting for Opioid Addiction Treatment Act”. In a nutshell, they wanted to make chronic pain patients pay one cent for each milligram of active opioid ingredient in their daily pain medications.  This money was then going to be used for treatment centers for drug addicts! How ludicrous is that?  Would anyone ever think about taxing my grandfather for taking insulin, because he is diabetic? Would they put a “fine” or so called “tax” on high blood pressure medications? NO! Nobody would place a “fine” or a “tax” on illnesses such as high blood pressure or diabetes, yet the medications taken for those illnesses also make people “dependent” on them. A person can’t just stop taking insulin or they could die! The heart medication that I take cannot be stopped abruptly, or I could have a heart attack! So you see, there are many medications that people may be “dependent” upon. That doesn’t make all sick persons “addicts”. We all take the medications that we need for our diagnosed medical conditions. The drug addict actively wants, craves and seeks out their drug of choice.  Those of us living with chronic pain truly wish that we didn’t need to take any medication. Chronic pain is an illness just like any other.

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 53 comments for this article
  1. connie at 3:08 am

    Sad to say that there isn’t a dam thing we can do. The alphabet agencies, insurance companies and doctors hold all the cards! Play their stupid games with our health or die! All too often its one in the same. Your fears are shared by all of us! I can’t remember when my daily pain level was a 4! That would be heaven!. My medication was decreased again a couple days ago and will be reduced again in two months. After that I have no clue what will happen since we’re moving to another state. I begged, to no avail, to not reduce since I have to pack up our house and make a four thousand mile drive! I could tell the doctor didn’t want to do it but it was reduce her patients meds or lose her job! The clinic director is a total [edit] and they go through providers like most people go through underwear! Good luck to you and everyone who is in this hell!

  2. Maureen at 5:49 pm

    Hi Terry, I’m sorry you are going through that! And, yes, your doctor can do that, most doctors are doing it to all patients because the Government is giving them prescribing guidelines and telling them what to do. We can thank the addicts for that!
    Keep reading more and more stories here on NPR and you will see that you are far from being alone with it. It’s wrongful and it’s ludicrous. Hang in there and keep finding support. We are all in the same boat :-(. Maureen

  3. Terry at 3:07 pm

    I love what you wrote. Recently my pain doctor, and his practice is called the pain clinic of Michigan. I’ve been going there for six years and during that time I have tried to talk to him about my many chronic pain symptoms. He doesn’t want to hear it. He only is interested if you try one of his back procedures. Now he is getting paranoid about the amount of pain medication he’s been giving me. My last visit he said we’re going to take you off of what you are taking give me less. Today I am taking 4 15mg oxycodone IRs and 3 40mg oxycotin daily. Now he wants to put me on 4 10mg percocets and 2 20mg percocet daily. Needless to say I’m totally terrified. The amount of meds I get today brings my pain level down to a 4 on a scale of 1 to 10, which is totally acceptable. I won’t go into all of my pain issues so let’s just say everything hurts because of breaking all of bones including my back twice. I am just wondering if there is something I can do? I’ve never abused, run out, tested bad with my meds. I feel like I want to sue him. Please help me with your suggestions, or if there is a lawyer that could help me. I made an Excel sheet with all of my injuries, surgeries, treatments and dates of each injury. I’m going to give it to him to put in my folder, maybe then he will listen. I hate this man for threatening me every time I go in there. Can he do that? Build up my tolerance and just cut me off. Please there must be something I can do. Thank you.

  4. Jean Price at 12:03 pm

    Connie…First of all, I’m so sorry! It seems our society and sadly our doctors have become more interested in BLAMING people, instead of realizing this is not the way to evaluate someone!! In fact, we are all flawed and do the best we can, regardless of others’ perceptions! Sometimes there aren’t easy answers, no matter what a test shows or a theory may be!

    For instance, if a person who smokes has related health issues arise or risks complications from smoking…are they any more to BLAME than a football player who might suffer a broken neck or a concussion? NO, I must repeat NO!! Blame needs to be taken out of the equation all together! ALL choices, ALL actions have consequences…and the POSSIBILITY of negative consequences. So, yes, choosing to smoke may increase the LIKELIHOOD of negative consequences, just like choosing to play football may increase the LIKELIHOOD of negative consequences too, like permanent injury! Yet blame is a MORAL judgement and has no place in medical care, or life, really. It seems to creep in most when people want simple answers for more complex issues!

    As far as addiction, and the so called “addictive personalities”…that’s pretty much all of us!! The tests are being interpreted based on genetics with a lot of grey areas not understood. And one addictioncettainky doesn’t mean for that person, now ALL addictions are a risk! Perhaps it’s even the nicotine or food or shopping addiction which is literally keeping a person from a more damaging choice….of which there are many! It just does NOT lay the groundwork for MORE OF THEM.

    And, as I said, I agree with you…we all have some form of addiction…a behavior or some substance we use as “pain control”…not for physical pain, although it may help that…but rather from some past hurt, upset, unmet need, abuse, loss, denial, or any number of life happenings. And they can be known or unknown…the mind is way to complex at protecting itself and us to be easily UNDERSTOOD or simplified by analyzing or categorizing, in my opinion. Nothing can take in life experiences…which are all registered in our brains!

    What I have learned about understanding addiction…
    An addiction usually grows out of some change, some loss…and NOT wanting the feelings produced that are painful! It is this resulting mental pain we want to block, to deny. We think at some level it will hurt too much to accept and to just allow the hurt, that it would figuratively kill us! So something is consciously or subconsciously chosen, something we may have liked doing or something new, something we decide to try or just decide at some level to increase doing… looking for whatever helps us deny the feelings we are having. Those hurtful feelings…about life, about what happened, what the loss meant….DENYING OUR OWN HURT, in other words. (Maybe the hurt grew from something obscure and seemingly simple, such as realizing that life isn’t fair or that people lie sometimes…as I said, it can be anything, known or unknown to us…both conscious or subconscious.)

    OF COURSE, whatever we choose doesn’t work, it can’t work…the feelings are real, like the loss or hurt causing them…so it resurfaces, sometimes even stronger. And this pain will keep resurfacing until it is allowed, and dealt with. Yet if we chose NOT to deal with it, not to feel the pain and just allow the reality, the loss or whatever happened…then the only thing we CAN do is try to find something else to lessen those feelings or use more what has seemed to help before…like a behavior to distract us or a substance to dull it or help us escape from it! Again though, it will wear off, so more is needed, and that wears off, and even more is needed to block the feelings and deny the painful experience or feelings…plus now we can have the added pain of what we’re doing! And this KEEPS REPEATING…until then…tah dah….an addiction is formed. Because over time, our body chemistry can change to now both want and require this action or substance to be able to function in a way we feel is okay, helping us feel like we can survive. (Some would go further and say….as this process continues and overcomes all reason and all of life, addiction then turns to possession!)

    As you said, Connie….many forms of addiction are much more socially acceptable…and legal…just like nicotine, or for instance….using too much salt, or sugar/sweets, any food really, or being the clown, even gambling, “health foods/supplements”, over thinking everything, being hyper-responsible, laxatives, over talking, OTC products, hoarding, shopping till you drop, over spending…and like nicotine, alcohol and gambling are not only legal but also more acceptable than illegal activities or hard drugs to most people.

    So for us who live with daily physical pain, of course the things we do that help us cope mentally also help our physical pain! Even if they are “acceptable” or legal addictions. That makes sense!! So, is that bad? Well, that’s not the best question to ask or answer, it leads back to blame. Our behaviors can turn out to be more hurtful, certainly…physically, financially, spiritually, emotionally, and with our relationships too. Yet, so can becoming terribly depressed and UNABLE to process the feelings…feeling trapped in the revolving door of losses, of beating yourself up and having others do that too…that you can’t see any good in life at all! That’s never a good place to be. So what’s the answer?

    It seems to me most want to be very black and white these days…either this is bad or this is good! What about all the in between? This narrow view of good-bad really doesn’t get to the truth though, nor is it helpful. So what happened to moderation? Isn’t that the better, kinder way to look at our habits and even our “lesser” addictions? If we are willing to ACCEPT the risks of possible negative consequences from our choices…are we to be judged by others who don’t live with pain yet who LIKELY also choose some behaviors or substances to help them deal with life? In a perfect world, no! We wouldn’t be judged or called out about it. But in this world, we are judged for even having the pain…any pain…in the first place. Not fair, really…and like I find myself saying so often, sad…really sad!

    Maybe the best we can do is try to understand ourselves and the way we feel. I do think it’s really important to understand addiction AND MORE important to understand how change and loss and grief can influence our lives. Pain is a huge change in our lives…a huge loss, that has ripple losses for likely the rest of our lives. It affects us and our families and our friends and our health care! We can face these losses…and grow from that understanding…to help us survive, get help from grief counselors as needed…or choose to put it in the corner where it will likely grow and leak out in many ways to lessen our joy in life and affect others too. It’s all a choice…looking for the right information and the right road for each of us personally…doing whatever we can do, when we can…to the best of our ability AT THE TIME, and occasionally reviewing what we feel we CAN change. None of us make it through pain very well alone…these things affect us all and we all can thankfully find support from each other and our faith and our friends. YET AT THE END OF THE DAY, it’s ourselves we have to live with…and we must be generous with ourselves, keep trying to find ways to love ourselves, to cope, to understand why we feel the way we do mentally, and how we might best learn to care for ourselves. Isn’t that all anyone really has? Pain or not?

  5. Terri Bell at 10:10 am

    I top am a chronic pain patient, an RN with 30+ years of experience mostly in oncology/hospice. I too am so afraid with the invasion of privacy, the interruption of the
    confidential doctor/patient relationship and the abuse of chronic pain patients. My doctor and I have tried weaning me off the Duragesic patches but only got about 50% reduction in dosage before I became bedbound and curled up in a fetal position because the pain was so bad. For the last 12 years or so we have been able to keep the pain level at lease controlled enough that I could take care of our boys while my husband has worked himself half to death to support us since I can no longer work. Now, especially in cold weather, I am in so much pain that I’m usually in bed or on the couch reclining. I was only 42 when my first spinal injury and pelvic injury occurred, our boys were only 2 and 4 yrs old respectively. The injuries continued to occur and the old injuries got worse also. I finally had to quit nursing, got fired from both jobs at which the injuries occurred, because it was unsafe for me to life, escort, etc any patients. The neuropathy and damage to my left leg requires that I use a cane intermittently because the leg gives out without warning. Finally, went on disability about 4-5 yrs ago. This has been so very hard on our family and it doesn’t help that both of our children have disabilities that require significant time and attention to address. We cannot afford for me to be totally down all the time.
    I would love to print copies of this discussion and mail them, along with letters, to our senators, congressmen and even our new president. What do all of you think? The article was right on the mark and well written. Your personal testimonials made me angry and also want to cry. Any way to get permission to print this thread and use it when submitting the info to our “leaders”. The CDC should be, well I cannot say what they deserve. At the very least I hope the ones putting doctors through an Inquisition and us patients through hell, that they start having chronic pain and being made to suffer just like the rest of us. I normally don’t feel that way, but I am sick and tired of the lack of compassion and understanding that they are displaying.

  6. R John Donahue at 10:12 pm

    No Kratom in Indiana. Ex-Gov. Pence wanted to be one of the first states (2-3 now I think) to criminalize that medicinal bit of creation, too. It scares me that he’s VP as he’s Full On War On Patients + science/compassion hold no sway over his judgmental dogma of pain.

  7. Maureen at 5:18 pm

    Terry, Sandra, anybody,
    Where would I find Kratom?? I’d like to try it… Thanks

  8. Sandra Gurrola at 2:51 pm

    I also use kratom, I cinsider it helpful, but no where near enough pain relief. I feel slightly better eith than without it though.

  9. Suzanne Stewart at 8:37 am

    Hello everyone,

    This is Suzanne Stewart, and I’m trying to answer all of your messages to my letter. I cry for my pain and I cry for your pain. Reading all the messages makes me so sad. I do know that there are people that do stand behind us or really, with us. I’m an Ambassador for the U.S. Pain foundation. They are with us and they go to bat for us; they are trying to help us. We are not alone. I will go to Lansing, Michigan I will do whatever needs to be done. I have a YouTube page http://www.youtube.com/Suzydukettes
    I do have some videos that I had sent to CNN and to the Anderson Cooper so when they did their little town hall meeting that was terrible against pain patients. I have written letters, I’ve signed petitions & I will do whatever needs to be done if I have to go in a wheelchair! I myself had to go through horrible withdrawals that were dangerous to my health after having a stroke and a heart attack in 2006 and 2005. Because my doctor left abruptly because they said he gave too many persons pain medicine. Wel, other people are not me and I am a chronic pain patient and it’s the only thing I have left. I’ve tried everything, it’s been a long time and I have a lot of other illnesses and I cannot have an SCS or a pain pump. I am still afraid for all of you and for myself and this fear will drive me to continue to help. I am not giving up on myself or you.

  10. Dave at 5:24 pm

    @ connie- thanks. I have been asked to write new legislation on pain care in NYS by some legislators and am providing the information and education on the issues. Im pleased to see more people in the last 3 years realize the need to speak up and out about pain care and i believe all voices matter. I have many more failures as an advocate then successes and I have leared the truth to the saying 900 times down and 901 times back up. And so the key to success is to keep trying and try to learn from ones mistakes. HAving said that i have learned to capitalize on others mistakes and have tried to minimize my own mistakes as an advocate.
    Folks should not assue if a letter doesnt get a response that it was of no effect or that there is no hope. There is always hope and we are the ones to keep hope alive for were are we without hope? But hope without hard work is like faith without deeds and so we must recognize the need for energetic efforts. And as the saying by Margaret MEad goes- never doubt what a small gorup of dedicated people can do to change the world- in fact it is the only thing that ever has. May God bless people in pain and wipe the tears from their eyes and let us hope in good fiath and work hard to make our hopes a reality.

  11. Terry at 4:32 pm

    Thank you so much, Amanda,and yes I will look into it.

  12. Amanda Newingham at 4:04 pm

    If you’re looking for natural pain relief, may I suggest you look into Kratom? It is an herbal supplement that is simply ground up dried leaves from the Mitragyna Speciosa tree native to south east Asia. It is basically tea. I have been drinking Kratom tea since October and I have my life back with much less pain! Check out the facts at americankratom.org. There is a lot of misinformation out there. The DEA is trying to ban it at the same time that major Pharma companies are patenting it’s alkaloids to make into new pain medications. If you do your research you will find it to be a safe and effective alternative to opioid medications. Perhaps one of the few options we pain patients have left to us. I wish you the best of luck.

  13. tbeckys at 12:59 pm

    Thank you, Dave. for caring! We need to write, complain or do something but I’ve written to State Representatives and Senators with no one caring or even acknowledging that I’ve written to them!
    If anyone has any ideas please post!
    Best wishes to all!

  14. connie at 12:14 pm

    I want to thank Dave for caring. It’s not often we have support from people who are not personally suffering. I wish there were more like you!

  15. dave at 9:20 am

    Were all living in the Brave New World of pain care- where Big Brother- Government, the health care industry and universities are showing their true colors- to dominate, control and benefit from the “opioid epidemic.” People in pain are realizing pain care is not about them- its about Big Brother and friends- though some believe there were good old days of pain care.
    And so pain care truly reveals that patient centered care is just a big lie. People in pain have less say over their care- and, as a result less control over their lives then in the past. And as we well know out of pocket expenses, hassles getting care or medication have become a nightmare.
    I think its important to see things as they are and not buffer ourselves with false hopes or comforting illusions. Pain care was never very good and now for too many it is living hell. I don’t suffer from pain- but it “pains” me to know of the suffering of others. People in pain have been made to suffer more by the phony do-gooders in society. Government, industry and our university system are no friends to people in pain-they are selfish, dehumanizing social Darwinists who see people in pain as a permanent underclass to be done with as Big Brother sees fit. And so youll hear more from them about “patient centered”, “effective” “balanced” care. Its just a pack of lies.
    For over 50 years there have been credible reports of poor pain care. Overall, too few people have sought to transform pain care-and that omission contributed to the suffering we see today. It is not too late to realize that people in pain need to unite as a class and demand transformation of our pain care system. I remember 5 years ago going on blogs and talking about big brother pain care- I was one of the few to speak that way about our pain “care” system and called for a new bundle of rights for people in pain- few signed on to such. And let me tell you things will get worse for people in pain as Big Brother and friends solidify their power and further weaken people in pain to speak up for change. Its a fascist technique they use. And the U.S. has become a fascist Nation. And as medical costs rise- people in pain are likely to have less care- just as schools cut out art classes or gym as costs rise.
    Only God or a social movement can save pain care from continuing to fall into the abyss. I hope the better Angels in people in pain- and those who care about them will rise to meet the challenge and end the Brave New World of pain care.

  16. Fred Brown at 10:25 am

    Suzanne, your post was very well presented in how our lives are being changed as a result of various reports, specifically the CDC report on opioids. This past Friday, I was reading how Medicare will be monitoring very closely, which physicians may be prescribing too much medication. Further, they would like for pharmacist to be on the “lookout” and advise if in their opinion a specific physician is prescribing too much.

    It has been setup where Big Brother is watching over us, making sure we are not using too much medication even so they have no idea as to why we may have been prescribed these medications.

    I know a bottle of pills by itself is not the only answer. Other modalities must get involved with chronic pain patients. A brief rundown such as physical therapy hypnosis, Biofeedback, acupuncture and one very import item is counseling. When one finds out their life will be living with chronic pain, as a result of many different factors we get angry and anger, if it is not let go of, anger will lead to a severe depression.

    I have lived with chronic pain for 19 plus years and during this period have been on two different opioids along with several other medications. My quality of life today is such that I can enjoy life to the best of my ability and limitations. Overall, I am stable which is due to having a very good, Fellowship trained and board certified in pain medicine doctor for these 19 years. On top of that, I try my best to control my life using tools which I have learned along the way from the different modalities. If all of these rules and regulations continue to take over, I will no longer be the stable person I am today.

    We need to form a coalition of legitimate pain patients who use these various medications properly in order to have a quality of life.

  17. William Dorn at 5:36 pm

    Please get this post and all the comments to President Trump and all the officals in your state.We have to get our stories out to the press.Please everyone start writing and keep writing time is running out for to many people.And pray that GOD will touch those that can change these cruel CDC guidelines.

  18. Lisa Hess at 4:27 pm

    Suzanne, an amazing letter. It’s all the same words I’ve said over and over again! I’ve lived with Chronic Pain for over 20 years when I had a head-on car accident. For the first 3 years it was the auto insurance telling me what I could or could not do and see who I need to see and then after the initial 3 months after the accident, stopped paying the doctors. It wasn’t until I fought back at them to pay my bills did they start again. I had to go on permanent disability 10 years ago because I couldn’t stand the pain anymore. after my third cervical surgery. I’m one of those people who, after 5 spine surgeries, can no longer have surgery unless absolutely necessary which could be any day now that I have an eroding Bone Marrow Edema at C1/C2 and another herniation right below it (the only disc I have left). The degeneration of my spine is going at an alarming rate. My sciatic nerves are shot, my S joints are going bad, L4-L7 discs are dead and degernation is climbing up while from the cervical is going down and won’t stop until they meet in the middle of my spine. But, just like you mentioned in your post Suzanne, my spine surgeon won’t operate unless he has to because he said “it would be the end of me and my pain will increase 10 fold.” I cannot have any more procedures because of the steroids I can no longer have. I had a Spinal Cord Stimulator implanted but had to be removed because it never worked as the nerves in my spine are criss-crossed and my brain wasn’t getting the correct signals to stop the pain.My prior PM released me 3+ years ago after being with him for 15 years because he had lowered my meds so much I was in so much pain I was crying and he wouldn’t put me back up. I had been turned away from so many other Pain Management practices because I was already on meds and they are “only doing injections now.” Thank goodness my spine doctor found a wonderful PM for me. He and I are very in-sync. He told me I am, in the physical aspect, the worst patient he has which is why I am the one patient in his practice that he will write a prescription for over 5 milligrams of Oxycodone like he has to for his other patients. I’m not going to go through all my medical problems but feel it also should be mentioned the other big thing we pain patients who are on opioids have to deal with. They are the side effects of the medications such as lethargic, constipated, loss of appetite, memory problems, sleep deprivation, etc. So why would I want to take medications that would do all these side effects, because if I don’t, I have no quality of life outside of my bed. Why would I take these pills if I hate taking pills and won’t take anymore for other illnesses because I hate taking pills. I only take the Opioids because I have to not because I want to. Suzanne, how do we get your post out to our political advocates without it ending in the trash folders?

  19. Terry at 2:03 pm

    I have had Fibromyalgia, R.A., Lupus, Interstitial cystitis and the list goes on.I need 6 operations but no Dr., will touch me as I’ve had a stroke and thrown several blood clots to my lungs. I have had these disease processes for 25+ years. I have a PC Dr., that was giving me pain meds and then the government cracked down and he said I would either have to take less than half the dose I was on or he wouldn’t give me anything. I have gone from being able to sometimes do small outings with my family but not now. I’m in pain 24/7/365 with no reprieve.I have to use a wheelchair(electric) if I’m doing any amount of walking as the pain is so severe. I’ve tried to explain this to my Dr., and all he says is, “Well that’s unfortunate but I can’t give you anything else”!. I as well as most of you have been subjected to urine tests to prove I’m not taking anything else besides what he gives me.
    I have written to Senators and Representatives with no help or acknowledgement that I’ve tried to get in contact with them! This makes me angry as these people and in our government have never had to face day in and out with terrible pain. Most have never hurt the way we do all the time.
    I was a nurse before I was diagnosed with all this and I don’t have a life …… I’m just existing not living and being able to enjoy my family. For awhile I thought I’d go to see a pain specialist but most have closed down due to this. When I recently called 2 Dr., offices where I live said…..” If you’re calling about wanting pain meds don’t come here”! I don’t know what to do!
    If anyone on this site knows what I can do please email me and let me know as I’m running out of options!
    Thank you in advance and God Bless us all!

  20. Amanda Newingham at 12:31 pm

    I am a chronic back pain patient and veteran. So far my VA dr has not cut me off, yet. However, with my fear of of addiction, overdose and the reduction in drug production, I have chosen to go the natural route. I was able to simultaneously get off of my pain meds, without withdrawals, and control my pain. One amazing herb is responsible for this. It is called Kratom. It works so well, that the DEA is spreading false information about it, claiming it’s dangerous, and trying to ban it, at the same time that major pharma companies are patenting it’s alkaloids to make into new medications. Fortunately, science is on our (the Kratom community’s) side and we are fighting to keep it legal for all. Studies have shown that it is relatively safe, much safer in fact, than opioid medications. If you want more info, check out the facts at americankratom.org. You won’t regret it!

  21. Jean Price at 3:44 am

    Some time ago, several people in the pain community said they had contacted ACLU on behalf of those with daily, life limiting pain who are being arbitrarily reduced in dosages or denied opioids completely…and they WOULD NOT TAKE THE CASE. However, I just saw a video where the ACLU is now taking the case of refugees!! How can this be? Please don’t get me wrong, there may be valid reason they would take legal actions for them…but I think WE have valid reasons for their support too! We’re citizens, first and foremost, who are being grossly discriminated against and it is affecting our rights! Our very lives! And our productivity and the ability to even care for ourselves! And what about the doctors…those who once treated patients appropriately and with compassion, following their oath to do no harm?! Instead of following the stupidity of the guidelines! Or leaving pain care altogether! .Don’t they have rights that are being violated too?!

    This is truly A NATIONAL SHAME…not just some bureaucratic problem! It has gone way beyond that…and like Chrissie said….the ridiculous, and unfair…basically unconstitutional guidelines…are even NOW starting to affect others in the world! America isn’t setting a good trend…they are instead deceiving the public and lawmakers for their own gain. And who is to stop them? We write letters, we visit people in government, we post what’s happening on Facebook, we have protests, and refute the media and the government’s position anyway we can….and we get nowhere. Our advocacy groups are fragmented and without a power base of ablebodied people to help carry this fight along with us! They don’t seem to know or care what others are doing that might either duplicate efforts or leave big holes in what’s needed! In other words, they don’t work together for a common good! We have no fund base for advertising or providing aid, we have no nationally known spokesperson to carry our banner! We have no power base for litigation as needed or even being heard by government….just the occasional individual who works tirelessly yet is one voice. We have gained only more pain, and that’s about all!

    Perhaps my negativity this morning arises from my pain own pain. Yet it’s so hard to keep positive seeing all this, and feeling the repercussions of such blatant disrespect for human suffering and all the skewed pseudo science behind pain care as it is now outlined AND PRACTICED in accordance to the infamous guidelines! Yet it’s also the truth…there is no denying this, even on a good day! So what really will change this? What will give us back sanity in health care for treating those with persistent, daily pain? More of what’s been done? I have my doubts. Aside from our groups joining together….I don’t think any of us actually know…but I’m pretty sure most of us feel what we’re doing isn’t enough or isn’t on target for the enormity of this growing abuse! Sad, really sad! And grossly unacceptable!

  22. connie at 8:53 pm

    I am not only a chronic pain patient who requires opiates to control my pain but apparently I am doubly dammed because I also smoke cigarettes! I realize the dangers of smoking and don’t need another lesson in the horror of tobacco use but I don’t think I should be placed in a higher level of probable addiction because of it! When I try to quit smoking my pain level rises since nicotine also has pain reducing properties. I am 62 years old and have smoked for well over fifty years yet I was informed by a doctor whom I had consulted for a totally different health issue that he would never have put me on the meds I now rely on for pain control because I smoke which makes me an addict! How many people can’t even think about starting their day without their coffee? How many have to have a chocolate bar to make it through a day? I don’t know anyone who hasn’t one form of “addiction” or another. It boils down to what is socially acceptable at this point in time. I have multiple pain issues including fibromyalgia, reynauds, degenerative disc disease affecting all but three discs in my back and neck, and several other issues that are as yet undiagnosed. The same dr who wouldn’t have put me on pain meds also on the basis of a 15 minute appointment decided that I have been misdiagnosed insinuating that I am not truly in pain! He would also take away my HRT and let me go totally insane! According to this family practice physician all I need is Prozac! I am not clinically depressed! I am frustrated as hell by the crap I have to suffer because some people high in government have a financial interest in making everyone an addict! I would like to see some of them land on their head on the pavement at 65mph and receive no treatment for twenty years. Think just maybe they would have multiple pain issues? Sadly one of the pain issues I have was totally caused by taking NSAIDS for many years! The most effective pain treatment for me has been a fairly hefty dose of fentanyl partly because I can’t throw it up but of course that’s a no-no per the cdc and I am being weaned off it. My dr thinks long acting oxy is better. Not only does it not work since I often throw it up or poop out an undigested pill but I don’t like the way it makes me feel! I know many people are suffering even more pain than I do and my heart breaks for them! It should be criminal to force people to live in pain that could be at least somewhat controlled with the proper medicine that are denied on the basis of false information being spread by greedy people! Even those people who have an agenda because of personal loss need to understand the difference between addiction and dependency! Just using the proper terms would help people differentiate between addicts and patients. Dependence vs addiction, medication vs drugs, compassion vs greed.

  23. MichaelL at 8:02 pm

    Hey, I fit right i to the group you described. I was a board certified general surgeon, trained in pain management, (Certificate in Pain Management from the University of the Pacific at Stockton) as well. I lost my practice due to the politics of pain medicine. My personal experience with fibromyalgia got me started in pain management. Having had it, as a male, left me with very good skills at making the diagnosis. Later, I had an accident. I fell and my second lumbar vertebra exploded. It damaged my cauda equina. I am now disabled with the spinal cord injury and suffer from a very unusual form of neuropathy. It was very frustrating when the neurologist and the “pain doctor”, from back woods Arkansas, told me they had no one on opiates for peripheral neuropathy!? They thought they should have bragging rights?! The “pain doctor” even wrote Medicare (without my permission!) telling them that I had exhausted all forms of therapy and needed a dorsal column stimulator!…(;-P….He tried not one , of the dozens of other forms of therapy available. He only stopped my hydrocodone! Guys like that are rewarded, and guys that tried their best, to do it right, are drummed out of business!

    These doctors should not be lauded for causing our lives to be more miserable! I guess they forgot the part of their oath that referred to relieving suffering!

    I enjoyed reading your article. I just wish that I thought that our voices were being heard above the uneducated, ignorant, physicians that are the “all knowing” experts. They are represented by the DEA and PROPS physicians, that seem to be running the show, right now! I am not a happy camper! I get depressed reading the comments to letters like this. It just reminds me of what we have to put up with, because we are requesting a little relief from our suffering!

  24. Bill McAuliffe at 7:55 pm

    Ms. Stewart’s article expresses (sp?) My thoughts to the T . I also don’t think the Doctor’s should prohibit someone from having a few drinks, or Marijuana for that matter. I know that may diminish My “standing” with the other things that were addressed, but I have to get My 2 cents in. The Government has no right to dictate how Doctors practice their Art, and the Doctors shouldn’t have the right to dictate Our lives. In any event…Very well articulated Article Suzanne.[ I also read that the Clinics get reimbursed for having the drug testing done, which I’ve heard is illegal]. Always with a grain of salt. It’s the Internet.

  25. Maureen at 6:07 pm

    Dear Renee, I cried reading your post. I know and feel your pain, your fear, your desperation, your sadness, your heart, your tears and most of all… the loneliness within all of that. I wish I could hug you… I send a healing one to you.
    I wish I could take it all away from you and give you your life back, my life back. My saving grace is God, He has a reason and I remain faithful.
    Please keep strong, one moment at a time. Maureen

    @ Dr.Helfand, and all others who posted… know that reading your posts gives me chills and such sorrow for our sufferings. It’s all so incredibly ridiculous what the government is doing to us. But, somehow I feel a wave is beginning to roll on our behalf. Keep vigilant. Let’s keep together, supporting one another and fighting the fight of our lives. May we never give up….

  26. Kimberly at 5:29 pm

    I meant to say minor like flus or serious like cancer, but cancer, and a few other diseases are still being treated. But those of us with rare diseases or suffering from pain from other things, not easily defined are left to suffer. Sorry for messing up the first sentence so greatly!

  27. Kimberly at 5:25 pm

    medicine is now only for those with minor issues, flus, or cancers, it seems to me the rest of us are being left to die an agonizing death.

    I had emergency surgery after 6 months of being told it was in my head at age 14, because I had to move and start a new school. The fact the pain was so severe, it took two hours to cross the football sized field between my house and the school, I woke up screaming in pain many nights a week, it didn’t exist. It was in my head.

    I survived on the mildest of narcotics, one that was said to only help a very small group of people, for the rest, it was like aspirin, this was propoxyphene. I made it through high school missing half a year each year for another surgery. College proved to be too much for my pain. I remained under my parents insurance, never to get married, ever to have kids. For the most part, being able to be in control of my need to constantly keep repositioning, kept me in an okay situation with Darvocet N-100, 1-6 daily. I had a diagnosis of probable arachnoiditis in 1986.

    I did okay until I decided to become as fit and healthy as possible. I lost 40+ lbs. I worked out 2-3 hours, seven days a week. But the added exercise increased the pain. I went to physical therapy to try to do back down the 2 extra Darvocet I needed. The therapist, at the end of the intake interview, had me do one exercise which left me in the worst pain of my life. It took four years and two surgeries, one that my parents used over $100,000 of their retirement on me since it was not a covered surgery, to finally get the diagnosis that fit the symptoms, and not a good diagnosis, adhesive arachnoiditis. I spent four years surviving the pain on hope of finding the cure. Learning there was no cure, I still deteriorated for another year plus! Then I finally am living bedridden, managing my pain with opioids. Now even this existence is threatened. What is medicine for, why should anyone enter into the field of medicine. Unless it is simple or is cancer, everyone else is now being left to suffer.

    It is so hard for me to believe that every member of Congress doesn’t know someone who has no life, suffering from pain. Yet they are passing laws to profit the doctors of groups like PROP , of which many appear to have financial reasons for wanting to get rid of opioids, to make money for their rehab centers.

    The doctors who truly care are being sent to jail for years, far more than rapists. They are having their funding blocked so they can’t hire lawyers for a good defense.

    So we are worthless to society, we are persona non grata! How do you fight those who don’t want to be educated?

  28. Deborah Babcock at 4:50 pm

    Very well written article !!!
    My so called doctor even went to lengths of UA me every time I went to see her and it was for a number of different drugs. Each time everything was neg.I can’t even go to the hospital any more with excruciating pain cause they treat me like a drug seeker as well..I tried everything out there for my pain and the only thing that gave me my relief was Percocet..my doctor moved and my med was taken from me now all the doctors treat me like I’m a drug addict if I say I need pain meds. There are so many people still getting these meds that don’t need them just to sell them on the streets..my last 2 doctors have moved,I can’t even find a Dr that will really listen to me now..our constitutional rights are being violated. It states that if there is a medicine out there that works on the person that we should have access to It instead They are making everyone suffer inhumanely..I bet they wouldn’t make their family members or themselves suffer in pain !! Why let us..when is this going to change..there are still people out there overdosing on drugs to this day,,,so has this ban helped..NO!! It has only hurt the innocent..there are people committing suicide due to no relief from pain..this is UNEXCEPTABLE.!!!!

  29. Sandra Gurrola at 3:04 pm

    I have found in the past one to two years, this huge change, in which if you need pain relief you are treated like an addict that is abusing drugs. I have had a severe back problem for a year, seen 4 doctor, including at a supposed pain clinic, where i got a completely useless injection. That doctor outright said we don’t give prescriptions anymore, so go to a chiropractor. I actually am seeing a chiropractor, who has helped to the best of his ability, but only maybe a 10%improvement ar best. I no longer have a life to speak of, cannot sit or stand without pain. NO help offered. I live in NH, working to try medical marijuana, but don’t have that much hope for success. These new regulations are a disgrace.

  30. Bruce at 2:49 pm

    Here is a note from a fellow neuropathy sufferer. And this happened recently:

    Well, I was taking Neurontin, Tramadol, Cymbalta, weed & some other stuff, but due to very abnormal liver studies I have had the pleasure of detoxing from Tramadol over the last month. And due to the opioid crisis they are now pee testing me & weed will get me denied. They gave me some opioid patches but they made me itch & when I took it off too early because I was going crazy I couldn’t get anything else until that patch was supposed to come off. This led to other types of detox. I am now acting like a Crack addict where I wasn’t before. I stockpile & substitute & check my meds. I have spent the last month nauseated, dizzy, and itchy with a racing heart, a nasty temper and incredible pain. I am always too tired.

  31. Dr. Mark W. Helfand at 1:53 pm

    First, I AM a dentist that had to retire due to CRPS. It started in my right forearm. It took close to two years and was originally diagnosed as either tennis elbow or radial tunnel syndrome by different physicians. The neurologist said I had to stop practicing at 42 years old. The surgeon said I had a trapped nerve in my elbow (like carpel tunnel) and surgery would correct it. I had already gone through the different NSAIDs to control the pain and wound up with an ulcer. I also tried most forms of conservative treatment; physical therapy, cold laser therapy and acupuncture to name a few. None of them helped. I was too young to stop practicing, so I had the surgery. That was in 1996 and the pain hasn’t stopped since. I was finally diagnosed with RSD by a pain specialist. I didn’t rely only on his diagnosis. I went to at least three other doctors in the northeast whose sub specialty was RSD. They all confirmed the diagnosis. It’s been close to 20 years and I’ve tried every form of treatment except hyperbaric oxygen and I.V. Ketamine. I was started on Tylenol with Codiene and finally wound up taking Fentanyl because it was the only medicine that helped. At one point, the pain specialist had me on a combination of narcotics, antidepressants and other medicines that didn’t help the pain or the quality of my life. I couldn’t see straight. I finally found a doctor that would listen to what I had to say. After all I am a doctor and had the same year of pharmacology in school as a physician. If anyone has patients with pain, it’s a dentist. I am currently taking Fentanyl and have been for close to 10 years. I am taking 15000 umgs every 3 hours as needed. (Not an error, 15 mgs) I have been high once once in the past 9 years. Getting high is the worst thing for me. It makes the pain worse because it causes me to concentrate on it. The time I got high was when I tried marijuana. It didn’t help. A few months ago I tried a compounded analgesic cream that my pharmacist read about in a Pharmacology journal. It was a medical trial and sounded promising. I discussed it with my doctor and he agreed it was worth a try. It contains Ketamine and has been a godsend. I have now gone for periods of 8 hours or more without taking Fentanyl and occasionally even 12 hours before the pain gets bad enough that I need the Fentanyl again. I gave part of my medical history because I agree with the author wholeheartedly. I live alone and couldn’t exist without the Fentanyl. I am NOT addicted to narcotics and am trying anything I can to stop. It also costs me over $5000 a month because insurance won’t cover it. Think of all the charities I could help if I didn’t need the Fentanyl to exist. I had tried going off narcotics and wound up in a fetal position crying in bed, ready to kill myself. At least now I may still be in horrible pain but can take care of myself, can carry on coherent conversations and pay my bills. Because of the recent increases in Fentanyl related deaths, my pharmacist had to find a different supplier for Fentanyl. The previous one wouldn’t sell to him because they thought he was ordering too much. This craziness has even effected a Pharmacy that works within the rules and regulations. Do you realize how frightened that makes me. What would I do without the Fentanyl. It isn’t nicknamed “The Suicide Disease” in jest.

  32. Renee Mace at 1:50 pm

    Thank you Suzanne as well as you sound a lot like me. I have been in bed since the guidelines started a little over two years ago. My pain started in 2001 from a car accident with left me with Central Pain Syndrome in both my legs. I had an awesome doctor that took care of my pain, so that I had a little life out of the bed. Today I was lowered again by the new Nurse Practitioner that my State hired 2 years ago, when they let go of my awesome doctor because he knows what it is like to suffer from pain and The University of Washington didn’t like him for that, so they took away his pain clinic of many years. Since then, I have been in bed permantly with horrible pain getting an hour or an hour and half relief between my pain medication doses. Today without talking to me, it was lowered down 40 mgs a day, I don’t think I will make it. I am very scared as I have little strength to go on anymore, I hurt so bad……… So very bad……….HELP! I AM NOT AN ADDICT, I JUST WANT TO LIVE WITH CONTROLLED PAIN LEVELS INSTEAD OF INHUMANE AMOUNTS OF PAIN!

  33. Chrissie at 1:12 pm

    I live in Alberta, Canada where some form of the guidelines will be implemented this March. Patients are already feeling the effect as doctors get sanctioned for not abiding by rules that are not in place (yet) & others who are ‘cleaning up’ their prescribing practices. We are desperately hoping our officials realize the travesty of the CDC guidelines by looking at USA as a ‘learning’ model of what doesn’t work. I truly hope they see how adopting them does far more harm.
    To hear that a politician would think of taxing opioids leaves me dumbfounded & I hope you’re able to put a stop to that ridiculousness! And for the money to go toward helping addictions just underlines how completely oblivious these ppl are. One will not help the other.

  34. I.Ben Aiken & Eileen Aiken at 10:35 am

    Well said Suzanne! Well said. I have been a chronic pain patient for almost 20 years due to “failed” back surgeries. I opted to have the surgeries for two reasons. The predominant reason was to stop the continuous severe pain causing me the inability to even step outside my home. The other reason was that I was advised by my orthopedic surgeon that I “could” have some form paralysis if I did not have surgery. Now, any further surgery is not an option to ease any amount of the chronic pain.. I have exhausted all other forms of pain relief. I still wear the back brace on particularly painful days. I still use ice at night on the same bad days. My last option was to be treated with opioid MEDICATION. I have been stable on the same medication that I was prescribed almost 15 years ago. As a matter of fact, I use 60 milligrams less daily now, than I needed 6 years ago. NOT because I am in less pain but, because I fear that in the future I may need more medication to get pain relief without being possibly over prescribed.. We all know how opioids “work” over time. Physicians and people that do not experience chronic pain believe that those who use “strong” medication are weak in spirit or will power. They do not know the reality of chronic pain. With the help of opioid medication, I have been blessed as to stay employed. This fact will not be possible in about two more months. I am being reduced in medication to 80% per day less than prescribed just 4 months ago. Reduced by 10% daily, every month. Even IF I can succeed in reducing my medication by 80% per day, more problems and questions are just beginning . I will STILL be in unmanageable, severe, continuous pain. I will file for SS Disability. How do we/I survive for possibly 3 years in my state until approved for it?. My wife is on disability now. She is no longer licensed to drive. We have no one to assist us to just survive. If I have difficulty reducing my medication to 80% less than dosage prescribed to me for 15 years, the physician will discharge me from his practice OR face license revocation himself. We are in our late 50’s. The CDC is placing unnecessary hardship on those of us who are already managing life with great difficulty….. now. Not all of us can lobby in person at the state level much less the national level but, we CAN write our state politicians, our governors, our state medical boards, congress as a governing entity and the President. If you know even a local government politician, try to find a sympathetic ear and convince them that those who are chronic pain “patients” are just that. True medical “patients” that are being discriminated against so a better “statistic” can be achieved. Namely a lower mortality rate among those with opioids in their systems at the time of demise. It is irrelevant to the CDC if said person is using illicit opioids, prescribed opioids, or both. I understand that the CDC began a 4 million dollar plus national campaign to convince those unfamiliar with the true nature of prescribed opiod use in America that everyone who needs opioid medication are “drug addicts”. I will write, not e-mail, but write, until the “guideline” is amended to be a rational resolve and not a “punishment” for those of us who benefit from prescribed, opioid use in the effort to control chronic pain. Again, well stated Suzanne.Your narrative is the one item that ALL chronic pain patients prescribed opioid medication have in common. It will take effort from ALL of us to amend the “guideline” to a more compassionate, reasonable, non discriminating effort to reduce the opioid related mortality “statistic” if that IS the goal.

  35. De de grau at 10:28 am

    This is out of hand. People suffering with constant pain, mental issues, anxiety, panic, ptsd will suffer more because others abuse medications and buy heroine and other such things on the street. Why should the innocent suffer?

  36. Laura Burkett at 9:49 am

    I am in California and I think my civil rights reserved being vilolated..I want to file a complaint however I do not know of the government in entity I should con r act. Also I am wondering if this is personal injury complaint..Possibly HIPPA violations. Any advice will be very much appreciated🤗 thank you for putting words out to express our struggles with pain and despair after these ridiculous dea cdc guidelines😣

  37. Barb R at 9:27 am

    Thank you for articulating the “Opioid” controversy so well! I agree with everything you wrote, especially the vast difference between ADDICTION and DEPENDENCE. I now have to visit my Dr. just to refill my monthly pain Med. I’m thankful he is supportive of his chronic pain patients but ignorant legislators are making things more difficult each year. I get angry each time the media has another “opioids epidemic” to threaten our legitimate needs for pain relief; my own family doesn’t fall on my side either — I have to keep quiet or lie.
    Please publish your article in a major news outlet & social media for the public’s edification.

  38. KellyLynn at 9:22 am

    Word for word my personal struggles here in Indiana. I wrote the government and a reply was brief stating the guidelines have been set and it is what it is explanation or as I call excuse. I suffer from a variety of painful illnesses but due to my age,sex,and my thick inspect report I’m being dropped every 6 months to start all over again! We go in every month to a urine drop just like a criminal but more often and much more costly. I think to myself if I’m going to live another painful day to not see my family and to never have my once very successful 3 generation real estate business tank. Im bed ridden, cut off again for 8th time since the opiod guidelines went into place, lost properties,lost vehicles,lost most importantly friends and family because they can’t handle, understand the pain and that the old me is gone. Thanks to groups like the NPR and many others I’m still alive holding on to that last burning nerve. I would love to be a vouce that is heard. I’ve lost many friends within last 3 yrs to both lack of medications and they either gad cardiac arrest leading to death due to withdrawl or they went to the streets finding whatever they could to keep their home and family till it was a matter if time the needle took their life. Im talking about young people too and it’s not a choice by some because the other resort now is these rehab places and they are not taking in Medicaid or non insured. I walked a friend in who like myself had a spinal fracture his was due to a work related tree fall 20ft plus to the pavement,went thru surgeries, OT, everything and fibally was back to work till he was abruptly stopped by doctor due to practice doctors decided that they weren’t going to handle chronic pain! 3 weeks later as I was in ER from HR at 139 and rising due to tachycardia I now have from being cut off high doses and found out my friend was lying in the morgue found that morning dead in the shower at 33, leaving a family grieving and wondering why he couldn’t get the gelp, his problems were legitimate.
    This article couldn’t have came on any better day as i was cut yet again so I ly here in my bed, aching, sore, feverish,chest pains, knife stabbing nerves throbbing feeling like this is my last struggle but I’m not alone. If you have advice on how or who else I can consult with that’d be great.
    P.S.
    Did I mention that 40% of my ligament,tendon damage throughout my body was done by a anesthesiologist who did procedures under anesthesia that was not approved by the health board nor her nurses licensed for 3.5 yrs and dropped me wgen my settlement cane in too low despite her outrageous depositions with 24 diagnoses and I seen the FSSA disability doctor 3 yrs ago that confirmed 7 which some are CRPS, Fibromyalgia, Berger’s paresthesia, myofacial pain, myositis, chronic migration and chronic gynecological disorder! Does those diagnoses not justify the need for the right opioids to make me functional? I’m truly afraid.

  39. Brenda L Moore-Finch at 9:16 am

    It’s true. I’ve also noticed that heroin deaths are lumped into opioid deaths. It must be to exaggerate the so-called “epidemic.” It’s also true NSAIDS kill more, and there is A growth in substance abuse treatment centers. Doctors are held hostage by regulating agencies and even some governors have passed laws limiting scripts for opioids to three days, while others a week, against the advice of the AMA. My own personal battle is a harrowing story I plan to submit because what happened to me is happening elsewhere. For background, I have fibromyalgia, IC, IBS, failed neck surgery, degenerative disc disease, severe osteoarthritis, Mast cell disease, Addison’s disease, and Trigeminal neuralgia. I have had the latter since 1986. The others became acute in 1995. I have been disabled since 2004 and rarely get out of bed. Although a model Pain patient, I have been taken off my meds.
    I was a journalist for many years and executive director of a non-profit when I became unable to work at all and had no pain management. Today, circumstances are not much improved and my only relief has been taken away.

  40. Kim at 8:55 am

    Great article!! RSD, rapidly spreading through my body, is also my constant companion, bringing pain that most mere mortals could not imagine much less endure. Until those passing judgement and legislation feel our pain on a personal level, and until those who stand to gain financially from separating us from our meds are removed from decision making on our behalf, we will continue to be under-treated, merely science projects for their latest gadget or procedure. It is beyond inhumane, may God help us!

  41. Michelle Garcia at 8:37 am

    Wow, this was an awesome article and is exactly how I feel. My pain doctor is making me feel like a drug addict and is trying to say I need therapy and trying new drugs on me. He is making me feel worse than a heroine addict!! My last appointment I was absolutely hysterical. He told me my chronic pain was all in my head!! I have had 5 major back surgeries and have proof of my pain with my MRI! I have been suffering since 2008 and now all of a sudden he wants to take away what little quality of life I have by taking away my pain medication. This is insane!! I don’t abuse my medication and only take when I absolutely have to. Something needs to be done. No one truly knows your pain and these pain doctor’s make you feel even worse. What quality of life I have is made a little better with medication and to not have that is truly horrible. Without medication I would become bed ridden and worse I would give up on life! I fear my pain, without medication, would drive me to do the inevitable!

  42. Debbie at 8:32 am

    Well written piece. Everything in this article is true. Thank you Suzanne so much.

  43. Maureen at 8:23 am

    Suzanne, So very well written!! Thank you for putting it all into your perfectly said words and for the detailed hard work that do everyday on our behalf.
    I plan to print your post and share with the CP Support Group that I facilitate.
    It will greatly educate those in the group who aren’t fully aware of all that you wrote.
    With Gratitude, Maureen

  44. Laura Sparks at 7:55 am

    Thank you for writing this.
    This is what I have been dealing with on a regular basis from the health care in my community.
    Primary Physicians r dismissing their chronic pain patients..bogus pain management clinics r popping up all over. I am very lucky to have private Inshurance those of my fellow suffers r being scorned and profiled from clinicians focuss only on the opiate rx..not on the individual person and their other health care needs.
    I have developed a heart condition over the stress of my undertreated chronic pain.
    I am pretty much bedridden.
    I do not enjoy quality of life as I used to.
    The media hysteria and lies have affected my relationship with family members negative.
    Thank God my partner is living and patient with me or I would be in assisted living and I am only 61..

  45. Al Fleming at 7:01 am

    Every product ever made can be abused. If you drive a car on the left side of road at night with no lights on you get killed. Lawmakers don’t enact laws to stop building road or cars. Yet people without pain want to legislate those of us that have pain. Opioids are abused by missuse. If a person crushes a time release opioid like OxyContin and snorts it and dies that’s missuse. If it involves a young person that’s tragic, but don’t legislate against people with legitimate needs. Some other pain meds make users sick to their stomach or lethargic like transdermal patch delivered drugs.

  46. Charlene Houchins at 6:53 am

    This article put the complete opioid situation in perspective. Having lived through this debacle that trying to get pain medication caused me, I salute Suzanne Stuart! For years I lived with pain that left me sitting in a recliner only able to think about the horrendous pain I was in. Opioids gave me enough relief to have some quality to my life. I could get out of the chair, move around, function, leave the house and go to doctor appointments to continue to try and find a way to stop the pain. Thank God for the Mayo Clinic in Phoenix. Life is not perfect, there are still aches and pains and days when I just have no desire to do much but there is not the debilitating pain. Thank you Suzanne for differentiating between people who are “dependent” on drugs and those who are “addicted” to drugs. My husband kept hammering at me with the “you’re an addict” just wanting my high. I still don’t understand the “high” thing I never experienced. I don’t even think about pain pills now that my situation has stabilized. I know another bout with pain may be coming but I know now what the problem is and it can be fixed. I say, tongue in cheek, I will never go back to the life of the recliner!

  47. Jasmin at 5:13 am

    It is so very true that they are clumping pain patients and people on the street that purchase pain meds from people who are buying them unlawfully. The problem is that there are a lot of people that receive pain meds but don’t need them. What they do is sell their pain pills to drug addicts, then take them to get high and mix concoctions together and overdose.
    Pain patients are taking their meds just to be able to live an almost normal life. They need to start going through files and a serving more who actually needs these meds.

  48. jeffery crawford at 5:13 am

    i think you did a wonderful job on writing this !! thank you !

  49. R John Donahue at 5:10 am

    Suzanne,
    You are 100% right.
    100% spot on analysis & concise-as-possible writing to ID the pompous perps, voiceless victims, agency propaganda, & the ever-true Follow-The-Money dictum.
    My own research has shown much of the same. Big Gov / Big Pharma have been, by selective omission, censoring science for years. The medical research is out there, but, especially in the CDC’s past few draconian, mandate-overstepping, power-grabbing years, all research shining light on their lies, contradicting their Big Pharma-driven policy Dogma, has been omitted by agency propaganda and deceitful “studies”, even if some involved are well-intentioned.
    They’ve been manipulating false fears into accepted “truths”, passing such misinformation on to the headline-skimming, infoverwhelmed public as “science” by their enablers in the news industry who profit from dire headlines & thus irresponsibly parrot CDC/DEA-talking-points with no critical analysis. “Drugs are bad, m-kay?”
    Never mind merging stats to equate street heroin with life-re-enabling Rx’s of generic, cheap, effective, millennia-used classes of medication that don’t make the Big $ made by New Brand Name Drugs … that less effective but always expensive & usually toxic form of mass human experimentation that excludes the many who can’t afford its CDC-approved “moral” inefficacy.
    Mind you, I’ve no medical training, but I’ve a law degree & yrs of experience in legal & other research. Unfortunately, the Gov’t’s anti-pain-relief-religion’s insistance on patient suffering & terrorization of doctors’ freedom to adhere to their oaths and treat valid patients (even medical professor practitioners) killed my career as an attorney, and have killed enough successive livelihoods now that I see no hope in sight. Except perhaps your article and another on this site, as well as the majority of states that now recognize the science of & allow medical marijuana treatment & research (a modality of which I’ve never been afforded the chance to see if ‘twould reduce/replace the need for meds that attract pitchforks for pain patients).
    After years of brick-wall frustration, pain, and loss (the latter due to Big Brother, not to effective pain relief), I vividly understand the forbidden-to-report-on, yet real, suicide crisis among the millions of chronic pain patients discarded by their “protectors”, both political & medical. The doctors’ puppet masters killed not only my prospects in life, but my fatherhood, my family.
    So, yes, it’s validating to have also gathered the thread of the things you write of. I’ve found plenty of medical research contradicting the CDC’s “opioid medication is an epidemic problem” goal of using street junkies, patient stigma, and anti-medical regulatory-pressure & opinion-warping to eliminate relief, sorry, I mean eliminate opioids, as even an option for those of us who’ve tried everything else & function fully while competently treated (incl. opioids). I’ve filled in the missing educations of a few doctors with enough bravery, intelligence, and open-minded lack of ego to actually listen & consider the research I’ve shared with them. But they are the minority.
    In one case I was actually told that the studies I’d provided were irrelevant because not peer reviewed … clearly thinking I didn’t know what that meant, as the batch I’d brought him WERE peer-reviewed studies. In one “pain clinic” the office psychiatrist told me I was “better off” being non-functional in society, sick, bedridden, unable to work or care for my then-wife or our 3 young sons … than I would be if I *gasp* needed regular use of inexpensive but oppressed pain medication in order to live this live life rather than be a hopeless, suffering victim. I know; I wish I was waxing hyperbolic, but I know how to depose a witness, so I literally nailed his incredulous “professional” opinion down on all those issues.
    The Senator who said that we need a voice is so right. We are a vulnerable, easy scapegoat since history (& even, eloquently with evidence, William F. Buckley, Jr. in National Review, of all publications) has shown that no amount of laws or $ has removed or even dented the numbers of certain types of people who will pursue illicit “happiness” at any cost, including their lives.
    But they undertandably think we’re easy prey to justify their budgets & power & public image of fighting epidemics. We are at the greatest disadvantage. We don’t break laws. With untreated/ineffectively-treated pain sapping our will, our hope, our focus, Untreated/ineffectively-treated pain saps our will, our hope, our focus, splintering our chances to date at unity, leaving our tragedies smugly drowned out by the ego/deceit of those with big budgets and no consciences. That doesn’t characterize everyone in federal/state gov’t, of course, but given what’s happening, what’s happened, it is almost no comfort to know that there are good people involved in a process that so narrowly targets society’s most vulnerable population. Even with my knowledge, experience, & records, I dread talking to doctors about pain. Seventy times bitten, a hundred and forty times shy.
    I don’t know what to do, honestly. But I want to be a part of this, of finding and viralizing our Voice(s). We Need Voices in the “conversation” where society’s rules are made. No amount of tweets or comments on articles, posts, forums, etc., by patients seems to make an echo, much less qualify us heard as a Seat At The Table.
    I am grateful you are able to access and get the ears of some of the powerful, among whom we need allies by, say, yesterday. I deeply thank you for existing.
    – R., J.D.

  50. M.hol. at 4:16 am

    I agree 100% with every letter typed in this article. I have been treated like an addict by my pharmacists on a regular basis. Recently I was fired by my pain clinician because they felt they were unable to control my pain. This I was told at 4pm on a Friday. So even upon my gp’s recommendation to take all my paperwork and empty prescription bottles into the ED. I was told by the head physician that all we can give you for your 9/10 pain (and I understand your in dependency withdrawal from 90mg ms contin and 20mg Lortab daily) is fluids because we’re not in the business of getting people high here. Really? After the embarrassment alone of having to go there for that to begin with…fluids AND to say that?! Talk about mortified and angry. It’s been 2 weeks since then and I’m in so much pain I understand the allure of suicide, but I feel that’s normal when this kind of pain keeps you from sleeping. And my gp just says he won’t give me anything because he’s not willing to lose his practice for me even though he’s the one who sent me to the clinic almost 5 years ago. But he’s willing to pawn me off to others. Too bad they are apparently in no rush to see me. At least after detoxing from all the meds I now remember how bad my pain truly is…

  51. Laura Elliott at 3:45 am

    Thank you for putting words to what chronic pain patients have been feeling and experiencing in recent years. Together we can make a difference on this issue.

  52. christine taylor at 3:22 am

    Canada is in the process of changing the recommendations for the use of opiates to relief chronic pain. Below is my letter to them. I will be filing a complaint with the Human Rights Commission as I belief that the proposal put forward discriminates against Chronic Pain patients, addicts and those with psychiatric problems. Please review the recommendations and give feed back. The committee stated that these recommendations will go forward unless they have something significant that the committee never thought about. Please help by clicking this link and telling your story. http://nationalpaincentre.mcmaster.ca/feedback.html……this other link is the 2017 recommendations for your reference., Please, even if you are not Canadian, we need to put forth your story. If we can stop the assault on Chronic Pain patients in Canada just maybe we can stop it else where. http://nationalpaincentre.mcmaster.ca/guidelines.html

    Hello,

    I am deeply concerned about the recommendations regarding the use of opiates to treat Chronic Non Malignant Pain. I believe that the recommendations are cruel and inhumane, violate The Health Care Consent Act and is in Violation of the Human Rights Code.

    These recommendations are filled with bias opinions as a result of the stigma in society around Chronic Pain and the use of narcotics.

    Far too much emphasis is placed on societal expectations and little concern is given to those who are suffering.

    Society has no place interfering in the medical care of others. To treat chronic pain, a balanced approach is necessary and care is highly individualized and should not be communal consideration.

    Whether or not one is an addict or a non-addict suffering from Chronic Pain, Informed Consent should apply just as with treating any other illness. Chronic Pain patients are often looked down upon and live without dignity as a result of doctors refusing to treat them.

    By denying adequate treatment is to sentence patients to a living hell. They deteriorate mentally and physically and have no quality of life. Their only choice for relief would be to get the medication they need off the street or to die. Since the Assisted Dying Act prohibits those who are not terminally ill from receiving assistance, the patients cannot even die with dignity.

    Society does not understand the complexity involved in treating Chronic Pain and therefore treatment should be highly individualized and consensual. Society has no influence on treating diabetes, high blood pressure, and should have no influence in the treatment of another person completely unrelated to them

    I will be filing a complaint with The Canadian Human Rights Commission to ensure equal access to care for Chronic Pain Patients and Addicts.

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