My Story: Reducing Opioids and Reading a Book Have Me Thinking about How We Are Treated

My Story: Reducing Opioids and Reading a Book Have Me Thinking about How We Are Treated

I have been one of the most ardent defenders of the right to have opioids or as far as any medicine goes, all options on the table to deal with our chronic pain. I have written articles in our local paper, contacted state and national governmental representatives, and told anyone who would listen that to interfere in the patient/doctor relationship when it comes to care is purely immoral.

Yet today, I write this blog post to say that I am working to get off of as much opioid use as possible. I have now reduced my opioid usage down by over three-fourths and it has been nothing short of hell.  I have felt like a freaking drug addict and my body has responded that way as well. I am sweating and having some willies, shakes left over from this slow, doctor assisted, reduction. But I am thinking that it is totally worth it.

I still have pain issues. My lumbar and cervical spine is not well and if I do anything other than get up out of bed and walk to my easy chair, I am toast. If I walk out in my shop and attempt to carve, after a while, I am done for the day. My legs are unsteady and I am afraid I am heading towards a wheelchair because when I get up in the morning, it is really difficult to gain balance. Same thing at any point during the day but I swear , me, Tom Selleck look alike, Magnum PI, in a wheel chair? I just can’t think of it. That is beside the point because I am now rethinking our use of opioids versus the care you and I receive.

If indeed it is the best pain medicine for folks who need them, they should be allowed to get them. I have fought as hard as anyone to make sure they are accessible. Yet now, after changing pain management clinics and now reducing the very pain med I have fought to have access for, I wonder if our fight for opioid treatment is flawed. Media and government are stuck on the negative dynamics of pain, ie, opioids and their side effects, while we, individuals, people in pain, are forgotten, lost in an argument that we cannot win.

The emphasis on chronic pain has been on opioids and not on our treatment and now, after all I have gone through, I wonder if that shouldn’t be where we need to be raising our voices.

I think that we should demand that doctors and providers change the way we are treated rather than demand a particular form of treatment. I am reading a book right now called the Wounded Storyteller by Arthur Frank and it is an excellent read. You may be interested in his book simply because of how it talks about the change that happens to people when they become ill and how their stories of existence and being changes as well. It is as if our identity is stolen right in front of us and we are left with trying to describe this painful life we live in. It is our very own life story and I am not sure that the rating scale of pain from 1-10 that we all take gets at it.

It has me wondering if we should stop all of our complaining about only slice of our treatment (opioids) and start expecting doctors to hear our stories in order to develop a comprehensive approach to our pain management.

Many of them simply don’t listen and I wonder whether or not they have been trained to listen. I do believe that if that part was changed and if we felt we were heard then it may change some things about how we are treated for the source of our pain.

Let me give you an example of what I mean.

So I go to my general doctor who does blood work on me as ordered from my new pain management doctor. The blood work is to discover my B12, Iron, and vitamin d levels. When my general doc gets the result, his response, briefly may I add, was that everything is within the margins as they should be. But when my pain management doc saw them, he said the levels are unacceptable.

Sure enough, after I read the research done on vitamin deficiency, the pain management doc was correct; my levels were not only low but deficient. My pain management doc listened to me as I talked about the increase in palpitations, the labored breathing, the sleep apnea, the complete package of issues that are side effects to opioids and the previous strategy for my pain management at the other clinic. The appointment with him lasted longer than a few minutes, with him doing an in depth probe into what was going on which included a weaning off of opioids in order to see what was at work in my pain filled system.

He shared with me the studies on opioid usage creating more pain in my body.  He checked my reflexes and talked about what deficiency in B12 would do to my lack of reflexes in my feet. He asked my wife how I slept and then promptly ordered a sleep study. He ordered an MRI of my neck and before I left did a series of trigger point injections in my neck and back that felt like I had laid down in a bed of scorpions. And we looked at a picture he had taken of me on my first visit, when I was taking high levels of opioids against where I am one month later and the picture was astonishing.

Then he went on a rail against pain management clinics that are owned by politicians who were looking at the bottom line and the kickbacks rather than our care and the need for full blown medical marijuana. He then thumbed his nose at the insurance industry and prescribed me marinol, a synthetic THC that after one month is beginning to help me tremendously.

It has been hell reducing my opioid usage. Pain flares have gone off everywhere in my body for 3 weeks, 3 hellish weeks. But I am now more present. My breathing has gotten better. My heart has stopped palpitating now. I have issues in my spine that are going to require attention.

How do we get the doctors to listen to us, to really listen to us rather than throwing pills at us? I believe if we figure that out then we can change the balance to a more patient-centric experience which may result in less pain.

That would be a conversation worth having, wouldn’t it?

Editor’s Note: Kerry Smith is a former minister, a professional artist, and has suffered with chronic pain for 14 years. He has lectured and written on the topic of chronic pain for several years. Here’s a link to his art studio website.

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Authored by: Kerry Smith

There are 52 comments for this article
  1. Christine Taylor at 11:28 pm

    Ed Coghlan,

    “I think the criticism you are receiving from folks who think you’re attacking opioids is unfair and keeps the argument narrower than it should be.”

    Hi Ed, —I do not think anyone who replied is being unfair or narrowing the topic. If anything, we shed light on the fact that we are all different and that we all have had different experiences with doctors, some more positive than others . People have listed all treatments they tried and most sound like they have or have had comprehensive treatment before adding an opiate.

    I am not even of the opinion that this is an argument but rather a discussion. We all benefit from discussions such as these and no one should feel that a response is an attack. I agree that I was a bit frustrated after reading the post originally but still, I learned something. I learned that doctors are prescribing Marinol, a drug that I have not heard about previous to this post. I will learn about the dosages, methods of administration, benefits and side effects all because of this post.

    When anyone writes an article or replies to one online they are putting themselves out there and may feel more sensitive to replies than if we were discussing the topic one on one.

    The bottom line is that I appreciate the discussion and appreciate the fact that Kerry took the time to write about his experience. I cannot speak for everyone but I would bet that others also appreciate that he took time out of his day to share his thoughts with us.

  2. Christine Taylor at 10:49 pm

    Stephan Rodrigues,

    I have tried several treatments from the list you provided. I agree that chiropractic care and massage therapy can help immensely. I also got relieve from gentle traction and a hot tub.

    My physiotherapist is proficient in acupuncture and so with an open mind I decided to try it. He said it would correct what was wrong in my body and reduce inflammation. Unfortunately for me, after many treatments, it did not help.

    I have not had trigger point injections and wonder if it is suitable for people suffering from Autoimmune illnesses such as Lupus. I will have to read up on it more.

    Exercise for me is very important in reducing pain but fatigue keeps me from going to the gym. I do low weight, range of motion exercises. Many times when fatigue hits and pain is bad I will just do range of motion exercises at home in bed. I often wonder if it would help pain patients to sign into an online exercise class at least once per day or record visits to the gym. Something like this would help to keep an exercise regime fore most in one’s mind. Recording the act of participating, or not participating, might make a chronic pain sufferer more accountable for trying to reduce pain using non narcotic methods.

    JEAN PRICE—I agree with what you said about the focus on opiates. If doctors suddenly said “no one with Chronic Pain should exercise”, and applied that restriction across the board people would be focusing on that. I would be upset as exercise helps me. This might sound like a silly example to some, but what I am saying is that it is silly to remove narcotics from a comprehensive treatment plan for all patients just as it would be silly to ban exercise for all patients.

  3. C. M. at 3:51 pm

    Ed Coghlan,
    The bigger problem I have with this piece is that Kerry seems to think everyone has doctors that don’t look at the ‘whole’ of the patient. As stated previously, my doctor, & others, do in fact check blood & vitamin levels on a regular basis & insist on the patient taking vitamins & other forms of controlling pain other than ”just throwing pills” at the patient.

  4. Ed Coghlan at 5:40 pm

    Kerry,

    Thanks for raising this discussion. It’s what we try to do at the National Pain Report.

    As you and I discussed before we published, this was going to create some cross-talk

    I think what’s important about your piece (and why I was happy to run it) is that it expands the conversation from opioids good or bad to a broader place of how to improve the doctor-patient relationship.

    I think the criticism you are receiving from folks who think you’re attacking opioids is unfair and keeps the argument narrower than it should be.

    How we expand the conversation to a broader discussion that talks about why the health care system is failing the pain patient is more valuable.

    Thanks for submitting it.

    Ed Coghlan
    National Pain Report

    Thanks for the post.

  5. Christine Taylor at 10:56 pm

    Thank you Danny,

    I am extremely fortunate to have my pain and fatigue at a level that I can tolerate. I have been on opiates for 13 years now and there is mutual trust between my doctor and me. She knows I do not abuse my meds and has a complete record of my usage.

    I was tortured by inadequately controlled pain before I met my current physician. I suffered three long years as my old doctor thought I just wanted drugs even though MRI and x-rays supported findings of arthritis in my back neck and hips.

    When fatigue and flu like symptoms hit I would often only get an appointment after the episode was over so most of my blood work was normal then. I went so long in pain. Finally I decided to go to a walk in clinic when I had symptoms and when the doctor got the results they phoned me to come in asap. When I got there she gave me a requisition to have the work repeated as she said there was no way that blood work was mine. I would not have been out of bed if this was my blood work. I was getting better by then as it had been about 4 days but the blood work was still abnormal. After the second set, she gave me another requisition but I waited until symptoms were once again present ( a week or two). When she got those results again they called me in and said there is no way the blood work was mine that the lab keeps making mistakes. I was shocked. She was in such a state of denial that she was wrong about me. I suffered horribly. My toes began to go bad and she said they were because of the shoes I bought. I told her I bought new shoes because my toes were hurting. I lived through hell.

    When I read this blog post I was pretty upset because I know there are many people out there who cannot get their pain under control due to preconceived notions and this blog post basically adds to that. If my old doctor read that she would think “there you have it, right from a chronic pain patient himself. He feels he never needed opiates.”

    I never expect to be completely pain free and look for non-narcotic methods to ease the pain. I need the medication to work and what helps keep me from becoming tolerant is fear that the medication won’t work when I need it most.

    My pain and fatigue was so bad that I used to fantasize about death, now I think of the future.

  6. C. M. at 4:25 pm

    You’re very welcome Danny.
    Dr Fudin & his colleagues are very smart & tell it like it is. It’s a great site, like this one, for Chronic Intractable Pain Patients with a plethora of information.
    Whenever I hear about opioid induced hyperalgesia (OIH) I laugh.

  7. Danny at 4:15 pm

    EVERYBODY! Please click on the link that C.M. has provided in his comment. Excellent read! Be prepared: “OOPS” has a dark side that I wasn’t aware existed. Thank you, C.M.!

  8. Danny at 10:48 am

    Christine Taylor, thank you for your reply to the comment that chastised many of us for our take on this “blog”. I, too, noticed, and took exception to, the number of references to what “We” should be doing and how “We” should be approaching our treatment. As a 25-year veteran of chronic intractable pain, I believe that I have tried every possible treatment for pain, including going without narcotic meds on 3 separate occasions, because the doctors I was seeing at the time had no answers except for “bounce back” pain caused by opioid medications. (I’m sure many others have heard this explanation as well.) If this gentleman finds answers for his problems using his recommended methods, that’s awesome! I’m thrilled when anyone finds relief for their pain! And he SHOULD share it with us. But telling us what “We” should do makes him appear to be just like those who want to ban opiods. Anyway, thank you, Christine Taylor for speaking up for many of us!

  9. Jill at 9:55 am

    Lonnie, I agree with Christine. What upsets the readers of Kerry’s post is is the assumption that we are demanding opioids without trying alternate treatments. If that has been the case with him I’m sorry for him. WE mostly have used after trying options. If only we had a good doctor we wouldn’t need them? Don’t think it works that way.

  10. Christine Taylor at 7:08 am

    Konnie–I do not see anyone being judgemental. The writer stated that he wonders if OUR fight for opiate treatment is flawed. He also stated that the emphasis has been on opiates and not treatment and that is where WE should be raising our voices. He also stated that WE should demand a change in treatment and that perhaps WE should all stop our complaining about a slice of our treatment and demand that doctors provide a comprehensive treatment plan. He asks how WE get the doctors to listen to us rather than throwing pills at us. He deemed us all to have had a lack of comprehensive treatment when that obviously has not been the case. Most of us have had every test and tried most non-narcotic treatment options. These assumptions are part of the stigma surrounding opiates.

    Initial assessments with a specialist generally are much longer than any other appointment yet General Practitioners are allotted only 10 minutes per patient aside from Physicals. Our GP’s know our stories and do not need to have them retold. We need to say what we have to as efficiently as possible.

    It is great that he finds relief with Synthetic THC but I do not want to take a psychedelic drug as it makes me high. All I would do is eat and sleep. I suffer no ill effects from opiates. The writer seems to feel that we all would benefit from the medication he is now on. Obesity is already a problem and THC is an appetite enhancer. What about those who suffer knee and hip pain and are over weight? With the Synthetic THC would they gain weight and make their joints further inflamed with trying to carry the additional weight? What about the effects weight gain would have on the heart and blood pressure and potential for diabetes.

    We all need the treatment that is right for us and assuming that we are all the same is what those who have no clue are assuming.

  11. Sheryl Donnell at 11:16 pm

    Ms said it well. If the other therapies worked, we wouldn’t be using Opioids. There would never have been a need for that first prescription because just about every doctor has us try other treatments first. This is like Prohibition all over again. Big Pharma will make a lot of money off of this by creating new drugs from old, inexpensive drugs that they will Rush thru the FDA as “less addictive ” by testing them on real pain patients who have never been addictive personality types anyway. They will take away our inexpensive, and proven relatively safe meds for unproven rushed drugs. And, the true addicts are already getting stronger and stronger far more dangerous street drugs that are killing or putting them into long term care forever. And pain patients live in terror.And I am not exaggerating. My “CRPS Friends” are all bring pressured to reduce their medications even as their pain is increasing, with NO offers from their doctors on how to handle their increased pain, and also bring called in for immediate pill counts and urine tests. Doesn’t matter what your plans are. I’d you don’t show up within a few hours with the exact count of pills, you are dropped as a patient. No vacations for you! And that is for patients who have never had a single problem with a med, ever. We are being persecuted. My own outstanding doctor just seems to have given up. His hands are so tied, he is losing his once passionate attack on Pain.

  12. Patricia Bowles at 6:17 pm

    I get your point and it is frustrating that the government is providing so much compassion and financial support ($30K) for 30-day treatment programs for those who abuse opioids, alcohol & illegal drugs for the sole purpose of getting high. Considering treatment centers for addicts have less than a 20% success rate – I do not understand why the government, politicians & insurance companies are willing to provide preferential treatment to those who abuse drugs and lie and steal to obtain them, but provide zero support or compassion for patients living with severe intractable/ chronic pain. Pain patients have few options and most alternative methods to help manage pain (biofeedback; acupuncture; massage; hot therapy pools; hot tubs; etc.) are not covered by insurance and are quite costly. Opioids are one of the few options (currently available) that pain patients have to help them to minimize their severe chronic pain. Perhaps if the millions of people in pain and veterans with chronic pain had received immediate & aggressive alternative pain management therapies early on (before the pathways of pain became established) that was covered by insurance or government-supported programs (like the 1.2 billion allocated for drug addiction) there would not be 100 million people living with chronic pain.

  13. Konnie at 6:40 am

    Kerry,

    Ive read and re-read your post and I simply cannot understand why some interpreted YOUR story as a call for all who suffer pain to reduce or give up their pain meds.

    Geez people.

    Unlike the comments section where one can write a book, Kerry’s brave post is restricted to a few short paragraphs.

    I say “brave post” because it seems to be unpopular to admit that opiates may not have been a person’s best treatment option.

    Our medications and treatments are as individualized as our conditions. What works for one does not work for others with the same diagnosis.Period.

    Choosing to reduce or come off opiates is terrifying! Finding and incorporating a non-invasive, non-pharmaceutical option is a leap of faith…faith in yourself and faith in something bigger than yourself.
    Guys. We are on the same side.

    Kerry, I choose to wean off of opiates. It was not a knee jerk reaction to the new laws. I had found a form of meditation that helped reduce the pain and i made a choice. It was very hard. Initially my doc was not supportive

    My choice was the right one for ME, not a call to all who suffer from pain and benefit from opiates to do the same.

    Sharing an alternative that helps could benefit others. There is no ulterior motive, no judgement call, no political statement, just a desire to share.

    Quick-to-judge comments will only deter others from coming forward with alternatives that helped them and which may benefit others.

    ….and when reading a post, remember that it is difficult to convey thoughts into words. Perhaps the benefit of a doubt is in order.

  14. John S at 8:54 pm

    Kerry,

    I wanted to ask you how well the Marinol / synthetic THC has worked for you ? What if any unpleasant side effects are you having while on the THC ? Do you find the THC to be helpful while you lower your opiates intake ?

    I ask mainly because Pa, recently passed the new law that permits the use of medical marijuana. I’m told it could be 2 years before patients in Pa. will see the new drug become available.

    Good luck with your efforts and I applaud your tenacity Kerry.

    Thank you,

    John S

  15. Maureen at 7:02 am

    Gee Kerry…your story sure did open a forum for comments!
    For those of you who haven’t followed Kerry in the past…please know that this is just his updated story of his latest experience.
    He too has been through it all, like most of us, and has been through hell and back over and over. And like most of us…he too simply keeps trying and this is about his newest journey he is ‘sharing’ with us….

  16. John S at 10:00 pm

    Kerry, sounds like you have thrown in the towel and had a double dose of the Kool-Aid and please don’t take that as an insult, many times I to have felt the fight was unwinnable. So, I step back and think of the life I had and the life I have now. Just last night at 3:30 am I was treated to a severe spasm, so severe I thought to myself ” this is why pain patients commit suicide ” No amount of pain medication would settle the spasm – I cried and then I said to my self ” I am never out of the fight and I never quit ” Stretching and trigger point massage make the pain worse but over time it does force the spasm to release its hold. By 5:15 am I was asleep.

    We need to ask ourselves: do I need opiates for the pain or do I need opiates because I like them and I do have pain ?

    In our fight to overcome the anti opiate march on America we must all stress a very important point: ( using strong pain medicine is not a choice but it is a necessity ) AND opiates are just one of the remedies we need and use to combat severe pain. Once while reading a post on NPR the writer suddenly stopped and said ” I’ve got to go, its time for my pain meds ” After 30 years of pain,11 back operations, over 25 MRI scans, more than 20 myloegrams and CT-Scans, 100 + injections, 4 procedures to implant and then remove a spinal stimulator, thousands of visits to a chiropractor, 4 months of acupuncture, a body cast, Bio Feedback / Self relaxation therapy, physical training and exercise, a dozen different back braces, cocktails of NSAID drugs fed to me via an IV bag that took hours to complete, hundreds if not thousands of hours of study about my condition and what can help and now after over 12 years of opiate therapy its my humble opinion that pain medicine in opiate form is the most effective form of treatment. When I hear someone say – gotta go, its time for my meds” the first think I think is – this person really does enjoy the attention and the drugs. People in pain just don’t talk that way and when I say PAIN I mean severe and acute pain.

    Kerry, I do hope this all works out for you, however, it seems as though you are suffering even more now and you have been told to just TAKE THE PAIN. If its just for a few minutes or even a few hours OK but I cant believe that you are just fine and dandy living a helpless pain soaked life. By the way, I looked at your carvings and they are beautiful but if you cant carve then how happy are you. That’s the big question.

    If I keep this up I wont get much sleep so I will close with just a few more words.

    I know that lately it seems as though people using opiates for pain will soon be left without that option. I myself don’t believe that and my reason is, I’m living proof that the medicine does work and I am not the only person that feels that way. Lets all stop complaining about the government taking our pills because honestly folks it does make us sound like drug addicts and I know most of us are not. Its the overall attitude about opiates the drive bye media has created and sold to the American public. Most Americans cant tell you who won the Civil War or who the Speaker of the House is but they can tell you who plays some character in Jersey Shore and who Brad Pitt is married to. Are we going to allow them to tell our Dr. if he can or cannot prescribe a medication.

    One person can make a big difference, want proof ? Just GOOGLE the name Marianne Skolek Perez. Her daughter died from an Oxycontin OD / Marianne has called it murder and blames BIG PHARMA and all by herself has been a leader in the – Ban Opiates campaign.

    Some of us might find we can do without the use of opiates and the others will find what they already know – we still need them. Lets do a better job of showing the other side that we are not looking for a high, just a little less suffering.

    ***** Marianne Skolek has blocked me from viewing her twitter account after I countered with factual data and information.

    Thanks,

    John S

  17. Em Raven at 7:18 pm

    Oh and newsflash #2: marijuana does NOT work for everyone and some have horrid effects from it (don’t say try medibles because it’s an ALLERGY) and many with dysautonomia/POTS can’t use it because of the effect of it on the heart or they have disturbing neuro side effects. I’m not saying don’t legalize but the idea that legalizing will fix everything when you’re taking away other people’s working option is very selfish and short sighted.

  18. Em Raven at 7:13 pm

    I’m glad you got off pain meds but you just admitted now you can’t do anything. Not sure if your QOL was better before taking you off, but to me this seems highly unnecessary and like you got conned into doing something “for the greater good” not your own good. Please keep in mind not all of us have doctors that listen (or that will even diagnose our obvious yet rare conditions such as Ehlers Danlos) and some are in even worse condition than you being weaned. Personally I have not eaten solid food for a month and lost 15lbs due to being weaned from my one pain med because my disorder doesnt show on scans and my ignorant pain doc seemed to think everything must show on scans and didn’t seem to know what a connective tissue disorder is. I was also purposely falsely diagnosed with fibro as an excuse to take me off my meds. I was then put on a Cox 2 that did nothing (so he could say they did something) even though I have known multiple heart problems and those are now worse even though I stopped taking it. I am literally starving to death and housebound with very low blood oxygen because I cant even breathe right from pain. This should obviously not happen to someone who is 26 (or any other age for that matter) over what type of medication is needed. Also most of us did the opposite of you (like what’s appropriate) and spent tons of money on those alternate treatments and techniques. Yoga makes my joints worse, acupuncture makes my pain and heart much worse, chiro is out of the question with how unstable my neck and spine are, and trying to meditate during a pain induced hypertensive crisis is just ridiculous. I am truly and honestly sick of this despicable talk of saying it’s somehow all gonna work out for all of us, we just need to find a different way to wean or try harder. Newsflash: some of us are truly just trying to survive our symptoms and pain.

  19. Therese at 1:17 pm

    For some reason, I am uncharacteristically outspoken this weekend, and would like to take the opportunity to change wording on my post/rant yesterday regarding my description of pain. Rather than “rearing its ugly head,” as other diseases and conditions do, I think it “hits” – hard.

  20. HJ at 10:12 am

    But… the war IS on opiods.

    For those of us who take them and benefit from them (and do not abuse them), we should be able to access them.

    So that is why we have to stay focused. And what worked for you may not work for the rest of us. So, we should keep fighting.

    You may still be in the honeymoon phase of this transition. There may come a time when you feel you need opiods again. I hope that isn’t the case. This is why you should keep fighting and encourage others to keep fighting.

  21. Therese at 9:19 am

    Jean, I second Jill’s sentiments (although I’m not in the medical field! …I was going to be a nurse, in what now seems like a past life – loved my studies but performing procedures on people, etc. was just not for me – nursing school dropout 🙂 I always watch for you to chime in and offer perspective. A while ago, we were discussing your “Michael Jackson” story. I felt like I should have responded to your final post, but it was so perfectly written, anything I could have said would have only taken away from that. Thank you for being here.

  22. Jill at 7:20 am

    Jean Price, I started reading the NPR blog a few months ago hoping to get some insight before deciding on a multilevel fusion surgery. Like you I worked in medicine. I wanted you to know how much I enjoy reading your comments. You are a common sense beacon in a sea of craziness, sad stories, anger, and fear.
    This post by Kerry is full of dramatic terms. Hellish, torture, a bed of scorpions? I understand he is excited by the attention he’s getting from his new PMP. We all live with a hope that someone, somewhere can make us better.
    But I believe many are like myself. Tried everything. Opiods reduce the pain enough to get up, do our necessary stuff, work, clean house, walk dog. Have joyful moments in between.
    I went cold turkey on my own 6yrs ago off hydrocodone. But couldn’t do it now. Too much pain. Use as little as possible. But don’t most of us??

  23. Miki at 2:04 am

    I guess it is worth it to find out what happens once you are off pain meds, and to give that a chance. I think going backwards in what you can do in your life, is certainly not a good ans. This guy is writing about how “happy” he is while being not able to do anything after getting out of bed? That is good? How are they going to treat him without the meds. Ok they gave him synthetic MMJ. But is that going to work? He talks about how the PM clinics should not be looking at the bottom line..but does he know how much it will cost him, out of pocket, to do alternate therapies? Our insurance doesn’t pay. I think this is just another example of someone who has possibly gone too far, had his new PM Doc, tell him to get off meds, and he is, and so far where is the Good? Let him write again in 6mos. After he has been off the meds and lets see his opinions then.
    One thing which bothers me: Why didn’t he go through all these other alternative therapies before he was put on the opioids? If they will work now…they SHOULD have worked back then! It seems wrong to just throw drugs at pain first. I think most people who are on meds have been through all this before even considering meds.
    Again, I would love to know What his treatment options are, and if they will take him from the bed to swimming or golf, or even walking and not just hitting the chair exhausted? What kind of quality of life is that. Maybe his meds were too high? Who knows?

  24. C. M. at 6:30 pm

    I forgot to mention that yes, of course, I have tried almost everything under the sun before being put on opioid based medications.

  25. C. M. at 6:03 pm

    While I am happy for you Kerry, it sounds as if you assume all Chronic Intractable Pain Patients are experiencing the same quality of care that you were receiving at your old Pain Management doctor.
    I had taken high dose opioids for five years, many years ago. After having four surgeries & feeling better & no longer needing them it took me a mere 4-6 weeks to stop all of them, without all the side effects of withdrawal you seem to be experiencing. Afterwards I never took any, never craved any, until a decade later when I broke bones, pulled a major nerve & needed them for pain control. We are all different but you should not be experiencing all these withdrawal symptoms. It seems that perhaps it needs to be taken a bit slower, for you. I’m no doctor but seriously, it sounds like a form of torture which you needn’t be experiencing.
    I now need high dose opioid based medications again because I have RSD/CRPS.
    Please, again, don’t assume that all our doctors behave like your old pain management doctor. My pain management doctor insists on me taking a multi vitamin, two B vitamins, folic acid, high dose vitamin D & others, & getting blood tests every 3 months. I still am on high dose opioids too, prescribed by him. If I didn’t have them I would be bed bound & miserable.
    Again, I am happy for you if this is the road you want to take. But please don’t assume it is a road that the CIPP *need* to take. We are all different.
    Since you have gotten a second point of view, *opinion*, with this new doctor I wonder if perhaps a third would be helpful.
    & yes, as another here mentioned, if I sound a bit upset about your piece, it is because I am. The reason being, one shoe does not fit all & it sounds as if your new doctor is trying to push that belief onto you & you are believing it, hook, line & sinker.
    Best regards.

  26. Jean Price at 3:55 pm

    I doubt very seriously if many people with pain started down this road only wanting pills! I figure we mostly wanted to get better, not just have our pain relieved….so how does this translate into wanting only pills?? We wanted to function better, have a “normal” life as much as possible…and were willing to try most any therapy to do this, even medications….but not exclusively medications! And doctors throwing pills at everyone? Not since the late 60’s when I was in training as a nurse. Doctors even then were realizing every patient didn’t need a script for every problem. And of course there always are exceptions, but I think most people don’t want a doctor who has pills in one hand and nothing in the other to help them with any medical issue, including pain! But, the reverse is equally true, most people don’t want a doctor who won’t prescribe pills when it’s medically appropriate…and this is where the new mindset about pain fails us. Pain needs a multi therapy approach, because most any therapy only takes an edge off…so you use several options to take as many little edges off as you can. And pain medication often allows us TO BE ABLE TO use other therapies to help overall. You can’t meditate, go to an acupuncture appointment or physical therapy appointment, do relaxation, do distraction therapy, go to the doctor for injections, do biofeedback, journal, or even take a hot shower when your pain level is screaming or even when it’s been a steady five for several days in a row and has laid you low! Yet a small amount of pain medication, enough to be able to accomplish these other things, is an asset….not a liability! It should be viewed as PART of the plan, not THE plan. And again, this is where the current mid set fails us. This is what people are talking about when they say they can’t function without their meds, when they say life isn’t worth living without medication. We’re not talking about dosages that make us need to go to bed! That’s what we’re NOT wanting to do! So, tapering totally off may be fine for some….yet I don’t believe that is an appropriate goal for everyone. Unless you subscribe to the current philosophy that “opioids are bad!” in general. And if so, I’m sorry…because that’s not a very well rounded view in my opinion, and it’s proving to hurt a lot of people already.

  27. G at 2:31 pm

    It would be nice to get actual treatment for our painful conditions, as we get proper treatment we might need less pain medication. As for your vit levals, i had the same thing, after years on pain meds, it was discovered i had pernicious anemia/b12 deficiency and in fact late into the disease after starting on b12 injections i did improve but then plateaued, it wasn’t untill 3 years later upon finding a facebook support group that i found out about important co-factors and began to see some real improvement, unfortunately delayed diagnosis and half assed treatment has caused permanent spinal cord/nerve damage. I was also found to have very low vitD only at 4 on lab tests, when high calcium “prevented treatment” i was offered no explanation just a shrug of shoulders it took about an hour on the internet to find a suggested illness and another 6 months to get referals arainge surgery for a parathyroid addinoma, upon waking from surgery to find my pain reduced by 50 percent. Id had high calcium and PTH for more than 15 years but they were “watching” it. Prolonged hyperparathyroidism has caused me advanced osteoporosis. Many people hearing my story say why didn’t you take better care of yourself? see a dr? Well I’ve seen dozens of drs, of all kinds, over the years i had 4 endocrinologists, 3 neurologists, 7 family practice internists, and 3 pain specialists, more “normal” blood tests than i can count, more than 25 different medications and I’m on disability so all of their drs had a go at it too. When i began to collect record’s many of these things were there, now that I know what to look for. While I am now off opiate pain meds, off all but thyroid meds, a sleep aid, an immune regulator, and a load of supplements, my life will never be the same, I will probably never work again, and still spend half my time in bed, I will still never move or spend a day without pain, but I’m still glad to be alive, but perhaps if someone had done their damn job I wouldn’t have to live like this.

  28. Doug at 1:06 pm

    I too understand the hell of significantly reducing opioid pain medication intake. 3 years ago I had been taking 80 mgs of hydrocodone pills and day, 240 pills per month. My original pain management physician wanted to put me on Oxicottin, but I refused and told him that the whole idea behind me going through the 8 surgical procedure, 10 months of HELL was because I did not want to have to depend on opiates for the rest of my life. As a direct result of the hellish year of 2013, I have now become 100% disabled and have been fighting for SSDI. This has been even worse then the surgeries because for 35 years of my life I have never had to depend on anyone else to help support me, and now I have have to depend on the most important people in my life to support me and pay for my medical treatments. Both my wife and daughter have done so much for me that it embarrasses me. Neither one of them have complained or ever not been concerned about how I feel, they are my rocks.
    Yes, while I live every single day in excruciating pain, I have managed to reduce my opiate intake by just over half and really only to take if I absolutely need relief. By using my pain medication this way, my body has not become immune or tolerant of my opiates so I have never needed a higher dosage for the same amount of relief. I now receive 120 Norco 10/325 per month and try to have at least 20 doses by the end of the month left. I never experienced withdrawal symptoms, or if I did they were very mild. I did all this on my own and just recently explained my plan to my new PMP. That plan being to eventually be totally free of opiates.

    On a recent trip to Oregon, I discovered something that with me just might be the doorway out from pain pill dependency. You see the reason for my trip was to help my oldest sister begin the process of selling her home and a joining property so she can move back to our childhood home in Michigan. My brother in-law, her husband of 30 years had passed away due to an infection caused from surgical complications. Two years ago his doctors discovered that he had intestinal cancer in stage 3.

    After a year of radiation, they removed much of his lower intestin, at first looked as though he was going to come out really good. Then the infection kicked in and took him in less than 2 months. During his radiation therapy, my sister who is a herbalist created a salve containing cannabis infused olive oil, Saint John’s wart, eucalyptus and other ingredients for his breakthrough pain from his back and neck surgeries.

    This stuff is amazing. While I was out there, I was very physical and the pain was excruciating, especially in my elbows and knees. One evening while sitting in the house after doing way more than my body has been used to for many years, my sister brought me some and told me to put it on directly to the sore areas. To my surprise it worked rather well.

    Unfortunately I couldn’t bring any home to Louisiana due to the fact that it contains Marijuana but she was kind enough to give me the recipe so I can make some for myself when I find ALL the ingredients. I hoping to be opiate free shortly after I start making this stuff for myself.

    I have never been a user of MJ but I have also never faulted anyone who was, even if there uses were strictly recreational. The fact that it is considered to be a schedule 1 narcotic is ridiculous, even by our ridiculous governments standards. I now am convinced that the only reason why MJ is still illegal federally is because big pharma has yet to figure out how thy can capitalize on its medical uses.

    I too have been advocating for pain patients rights to opiates. I too believe that they still are an important part of treating chronic pain, and I do know that every case of pain is different so every treatment regiment should be designed specifically for the patient in question.

    BUT, I also believe that too many PMP’s who are profiting from unproven and unapproved procedures hurt more people then they help. I can honestly say that I am in the shape I am because of injections and the surgical implantation of spinal cord stimulators. Before I was talked into these procedures, I worked 9 hrs a day, 5 to 6 days a week. Now I’m lucky if I can stand on my feet more than an hour at a time without almost being in tears.

    I just want to tell everyone, all my friends and fellow chronic pain sufferers. If you have the willpower to personally lower your opiate dosage, please do it. Don’t do it all at once, but slowly wheen yourself so you won’t go through too much withdrawal symptoms. Find some natural herbs and start experimenting with salves and or edibles to see what will help. I’m saying this not because I’m probably MJ and against opioid medications, because I’m not. I’m saying this because with the national climate against Opiates, more sooner than later the government will be putting the clamps on all opiate pain medications and heroin and Fentanyl is not the answer. I just don’t want to see anymore of my fellow chronic painers die or go to prison from self medicating with such a dangerous and illegal drug like heroin.

  29. Kris at 12:33 pm

    There is a recent study circulating that opioids might cause chronic pain IN RATS. My PhD ( medical research) friend tells me that the rat is a poor model to use for humans.

  30. Maggie at 11:14 am

    I also weaned off the majority of my pain meds. I was on 100 mcg of fentanyl and weaned off over a year period with no withdrawals other than restless legs which I take requip for. There is a clear difference in my clgnitive function. Ive noticed it but also others have pointed it out. My pain level is no worse and most days is significantly better. I was in the,hospital for potassium tanking and they noticed breathing problems enough to give me a small dose of narcan. Im still on my breakthrough meds, as my lower back continues to be an issue when standing or walking but im going to look into another nerve ablation for this. I had one previously and got 5 years of relief.

  31. Grace H. at 10:54 am

    I’m a 66 yr. old woman, had a laminectomy and spinal fusion both failed procedures. 12 years ago I was given Percocet, four times daily. For twelve years I have been able to do things without pain. I’ve been drug tested this whole time, never abused, just wanted to get through the day. I’ve requested blood tests four times a year to keep an eye on my levels, liver & kidney. A month ago, I had a glass of wine at dinner (I never drink but this was a special occasion). It came up in my urine and without even asking me the specifics, my doctors wife (not even him) made the call to tell me I have been cut off all pain meds. I weaned myself off completely without a problem but now I cannot stand for more than ten minutes and the pain is back. I’ve had nine epidurals in the past that last for a week. I was left in the dust by my “trusted” physician. They don’t care about their patients anymore, they are afraid of the government agencies. I want to blow his building up!

  32. Richard A. Lawhern, Ph.D. at 10:22 am

    Kerry Smith, your article certainly illuminates more than one dimension of the chronic pain experience. However, I suspect that many patients will take profound exception to some of your assertions. I certainly do, and for reasons larger than the difficulty which many patients face who use opioid medication that is now being taken away from thousands of them..

    It is always “desirable” that doctors listen carefully to their patients. There is plenty of medical evidence that when they do, patient outcomes are better. A strong and positive doctor patient relationship improves recovery rates and shortens convalescence in many medical disorders. The effect is called “nocebo”. For intractable chronic pain, such a relationship can lower anxiety and therefore reduce patient sensitivity to pain even if the underlying condition is not directly affected.

    However, the miracle of better listening by doctors isn’t going to happen soon in American medicine. The average appointment in a GP’s office practice is 10 to 15 minutes. Several factors contribute to this reality. Among them are the crushing educational debt faced by new doctors freshly out of med school, and powerful disincentives created by insurance companies that refuse to reimburse for time spent in extended appointments. To put the case bluntly, there simply aren’t enough doctors in general practice to have all of them listen carefully and at length to their patients’ concerns and symptoms. And insurance premium rates aren’t high enough to support that use of a GP’s time.

    To be listened to, patients need to see other kinds of doctors whose practice standards require deeper care. This generally means Board Certified internists, pain management specialists, rheumatologists, anesthesiologists, and other medical specialists who are recognized to be dealing with chronic — most often incurable — disorders. As many of us know, such specialists are expensive to either medical insurance or the patient themselves. The average wait for a specialist appointment is also weeks, since there aren’t enough of these people to go around either. Doctor supply has simply been exceeded by patient demand.

    Your mention of politics is highly apropos, even if perhaps not in the manner you might have intended. American medicine is today passing through a crisis. Medical error is the third largest cause of death in the US. Medical costs are skyrocketing for multiple causes, not least of which is the patient load of millions of formerly under-served people who have been brought into primary care by the US Affordable Care Act.

    Medical cost recovery today comprises a third of every healthcare dollar spent in the US. Regardless of the fantasies entertained by convinced political conservatives, our over-burdened and over-expensive medical care system cannot do much better than it does already unless we are willing either to limit the care provided, or to create a single-payer medical insurance system and take the profit out of medical care — or both.

    Even then, single-payer won’t be enough without major changes in medicine itself:

    – We’ll need major life style changes to reduce obesity (therefore diabetes and heart disease, among the heaviest financial burdens of current medical care).
    – Medicine must incorporate more preventative measures, and base them upon more rigorous medical evidence than often applied up to now.
    – To afford caring for all people with greater compassion, we’re likely going to have to take some of the high-cost technology out of medicine.
    – The single GREATEST cost saving measure may be to legally ban advertising for prescription drugs, and thereby turn off the artificial demand that Big Pharma has created for its products — sometimes by outright fraud and political bribery.

    My point in these observations is that pain patients do not live in a simple or ideal world. We live in the real world, and we need to be thinking about real solutions, some of which have very political dimensions. Better care is not something we can wave a magic wand and get for free. It’s going to require hard work not only to change doctor training, but to fundamentally change the politics of doctor and hospital reimbursement.

    I suffer from being a large picture thinker. But I fear the problem which Kerry addresses cannot be solved “in the small”.

  33. Amy Hartmann at 10:06 am

    Bravo! And congratulations on finding a physician who LISTENS to you and for recognizing that a large part of the problem is dealing with medical professionals who just don’t listen – or even worse, who don’t care. I’m especially interested about the reaction your pain management doctor had regarding your vitamin levels – treat the patient, not the number – it’s a mantra I learned in school, yet so many want to use the lab values as a shield rather than a weapon against what is ailing the patient. I’m happy to hear you are on the track to opioid independence AND that you’re feeling better for it – perhaps it will get other people thinking too!

  34. Bill Halper at 9:47 am

    I admire your courage delving into the unknown when you decided to reduce your opiate use. You had mentioned about how astonished you were seeing your picture now verse a month ago yet didn’t mention if it was better or worse (I hope it was better). I feel though that we do need some sort of pain scale, or “pain-o-meter” that would be consistent with everyone’s level of pain. I too am dealing with degenerative disc and cervical disease as well as a profusion of bone spurs, many in my neck. I suppose that can be considered acute pain as there are remedies? I also have Fibromyalgia which is an autoimmune disorder, one where there is no specific remedies beyond controlling the pain. I consider this to be a chronic pain syndrome. I know that there are many who do have fibro that can be managed with non-opiate medications (they are extremely lucky!!!), then there are those like me where the fibro is debilitating. For me, I have a difficult time walking, standing, sitting, moving my arms, pretty much everything because of the intensity of the pain which then reflects in my mood, my speech, ambitions, pretty much everything that relates to my existence. I cannot exercise beyond water therapy because the pain. Having tried every mod of pain relief (acupuncture, massage and more) plus the Cymbalta’s and others, the oxycodones have been the only drug that actually helps reduce the pain enough where I can function with the reduced pain sensation (I know that it will not completely remove all pain). I do know the side affects, the damage it can do to the body, but many drugs have not so wonderful side affects, and I determined that if my kidneys fail, my liver explodes, it’s worth the risk as opposed to living with this hideous 24/7 pain. This medication allows me to fulfill my need to have a sense of purpose by helping others, of being able to maintain myself without help. I can still be independent which is the most important thing most chronic pain patients want. And frankly even if I could get away with non-opiate based drugs, I feel it is not the governments place to tell my doctor and the patient that they can no longer use this drug. The way this “opiate crises” is being handled is abhorrent by non-recognition for those with chronic pain! I do agree that there needs to be restrictions because of those who use it illicitly, and those few doctors who over prescribe, but to include us in the same category as the drug addict places us as second class citizens, “it’s all in your head” category is very insulting, demeaning and extremely hurtful. Kerry, you are doing well for all of us, and I only hope that for you, your non-opiate treatment is a complete success!

  35. Stephen Rodrigues, MD at 8:52 am

    The solutions to human pain and misery was always in our knowledge base. The most effective treatments for pain all humans will endure from life was discovered and perfected in the 1960s. Here are a few of the pivotal Physician Scientist: Gunn, Travell & Simons’, Rachlin and Hackett.

    These are all “laws of nature” as to how the human body works which must never be breached without dire or deadly consequences. These are all devoid of human believes or tainted with voids in logic or mythology:

    The Basic Treatment of Disease Principles:
    Logical Causes

    Problem(s) of the disease; signs and symptoms, location, organ system and cellular pathology
    +
    Solution(s) which must address the causes, benefit the cellular pathology, assist in the healing of all of the disease damages and help to restore the patient’s mind, body, spirit and circumstances
    =
    Resolution of the disease process and Restore the patient back to work and play.

    The most common cause of pain in the body is from living our lives to survive.

    Forces of Life and Living

    Pain within the human body
    +
    Physical Therapy with hands-on and intramuscular needling
    =
    Resolution of the pain in the body.

    This is a collection of all that I have uncovered:
    What are these “Perfect Medicines” in the world of Hand-on Physical Therapy?
    http://www.ncbi.nlm.nih.gov/mesh/68026201
    https://nccih.nih.gov/health/chiropractic/introduction.htm
    https://nccih.nih.gov/health/acupuncture/introduction
    https://nccih.nih.gov/health/pain/chronic.htm
    http://www.slideshare.net/pankajnsurange/trigger-point-injection

    Notice something interesting??
    NONE are in today’s standard of care benefits.
    Most all MDs or academics do not know this simplistic information.
    Think Wall street and profiteers.

    Yes we both have been duped and cheated for the sake of the dollar.

  36. Danny at 8:26 am

    I’m glad this is working for you, Kerry. Over my 25 years of pain, I have gone w/out any narcotics for a calendar year on 3 separate occasions and my outcomes were the exact opposite of yours. I do question the studies you say your Dr. mentioned that show opioid increase pain throughout the body. While my main problem isn’t spine related, I have had several injuries (during my life) requiring surgery: 2 back surgeries (L-4 & L-5), 4 knee surgeries, and 3 wrist surgeries. I found that the medications I require for my head pain REDUCE other pain in my body. When I was weaned off the meds, my body pains became difficult, while my head pain was literally unbearable. So, as is said many times on this site, one treatment does not apply to everybody. Personally, my experience with weening off of opiods has taught me that I cannot live without pain reducing medications. Good luck!

  37. Dave at 8:23 am

    Like the Germans Invaded Poland in WWII- the powers that be decimated those who were taking opioids for pain. There wasnt much of a battle- even though some fighters for pain rights did admirably. You lost. You lost because- like the Polish you didnt see it coming and you werent ready to fight.But what is past is past- and nothing stopping people in pain from organizing and becoming a viable force. The only thing stopping the 100 million in pain is lack of will. Sure there are those in pain whose suffering is so great that we cannot expect them to fight. But I say there is at least 50 million who can fight a good fight -if they so chose. And they should fight the good fight- not just for themselves or better pain care- but for democrac, freedom reason and reverence for life. But my words wont matter to almost all of them as they have settled for the status quo.
    They say theyre afraid and that someone has to lead. Im sure the colonists were afraid of war with England to gain their fredom- just as the poor in France were afraid of the King before the revolution. But they fought- and won. Were not fighting an army- were fighting morally and mentally lazy bigshots- big brother- who has decided to dominate people in pain and determine what they can and cant have. And we have the great benefit of learning from history on our side- the civil rights movement, the rights at runymede, womens rights, occupy wall street, the russian and french revolution, the amrican revolution, LGBT rights, animal rights, the child welfare movement-movements across the globe and across time. There really is no excuse- yet we hear excuses for impotent immobolism all the time. I say- even in 2009 when i set out to change the law in NYS on pain care- I knew i didnt have a prayer. I had to quickly learn about pain-and i was overwhelmed with doubt- but i didnt give up- and within 2 years- i had gotten 3 bills on pain care in NYS. I had many battles- with governor cuomo-with the MSSny- with legsilators like Gottfired and Hanon the NYS ediucation department- the regents. And i had my share of victory. I fought against the government and the pain care experts- Mackey, Webster,etc to see that one of the goals of the NPS was to lower the prevaelnce of pain care conditions- and i won for Mackey, wenbster and co and the IOM, the IASP didnt want their friends in medicine to be held to a high standard for their country and for people in pain.
    So ive heard the excuses for not trying to improve pain care- and i dont buy them. So if people in pain are unhappy with the sorry state of affairs-their lack of effort is crtainly part of theproblem and not the solution to poor pain care in America.
    You wont be able to communicate with those in power because they see your voice as unnecessary. They see your voice as unneccessary for you faile to be a force where they were compelle to see it as necessary. For too many years Americans have been passive receipients of health care an other insutitions. Now they ont even see the error of their ways for they woul like to blame everyone else but themselves for the sorr state of affairs in America. Shame on those who complain about poor pain care an are unwilling to try to light a canle- i have no respect for that laziness.

  38. Maureen at 8:16 am

    Kerry,
    Your article is well worth the read, as always! Good job and I certainly wish you the best.
    I know you have been trying very very hard to figure it all out and gain a better-living life.
    The great news for you is that you have found a doc to listen, and to work with you and also to prescribe Marinol to help you along with your withdrawal and your future care. Hang in there and keep strong and focused! God suffered for us, we suffer for Him.
    And, you are right…if only we could get the docs to listen to us. I once had that kind of doc caring for me…until I moved to Fla. 19 mths ago. Had I known what was before me…I would never ever have moved.
    That alone is a huge huge problem. We patients have been become generalized and no longer individualized in our treatment. It’s a crying shame and quite grotesque to me.
    Let alone…it has increased my pain levels and sent me back to a therapist to vent about!
    I believe it will be a long long time to get that ‘old fashioned’ kind of care back in our lives, if ever.
    So what do we do in the meantime?? The fear of the outcome of each monthly appt has grown old and remains very haunting as the appt day approaches.
    And my B/P goes up…I’ve never had that problem before my move.

    I’d give anything to not have to take the medicine. I’ve tried several times.
    I’ve re-instituted other and new ways to get through my day in pain (yoga, increased use of my TENS unit, more frequent rest periods, have had to become somewhat more isolated because of it etc), in anticipation that our problem will keep getting worse and worse in regard to our meds. and treatment.
    I’m on a journey of treating myself ‘wholly’.
    But truly…it only assists the meds…it could never be a replacement for me. I’ve tried.
    I need my meds., unfortunately.
    We cannot live life in pain without great support. You are also blessed to have your wife at your side with this. Many of us have no one.
    I worked with many a med student, resident and fellow over my years as a nurse at a teaching medical center in Ca…. they are a whole new breed.
    I would love to be their instructor on pain management!
    So, what really is our answer???? I’m so very tired of this issue, I’m tired of thinking about it and trying to figure it all out.
    I’m tired of the side effects and tired of feeling TIRED!
    Meanwhile, I count my blessings and strive to get through another day…..things could be worse huh?.

  39. Bob Schubring at 8:04 am

    Henry Ford was famously successful with a mass-produced automobile.

    Autos are more alike, than they are different. They have 4 wheels. They consume energy for propulsion. They’re not pulled by horses or oxen. And automating parts of the manufacturing process on a production line, cut their cost and improved their quality.

    Pain patients are rarely alike.

    We hurt in different ways. We hurt at different times.
    We hurt for different reasons.
    Usually those ways, times, and reasons, change, because we age. And because more things happen to us that adversely affect our health.

    Applying mass-production methodology to pain care, reduces the quality of care, increases pain, diminishes the capacity for enjoyment of life, and renders us rather helpless to learn ways to use our own knowledge, our own initiative, and our own inventiveness, to make our lives better.

    “Doctor” is a Latin word that means “teacher”.

    The present, one-size-fits-all methodology for pain care, obstructs the doctor from doing any teaching. Which impairs patients from doing any learning.

    Nearly 50 percent of the total healthcare budget, pays self-described efficiency experts at insurance corporations, to devise further means of diminishing doctor-patient interaction, out of a belief that worse care is cheaper care.

    The Affordable Care Act took the unprecedented legal step, of forcing Americans to become customers of these corporations or else, pay a fine.

    The reason the healthcare corporations are losing money, is that they keep thinking that lower-quality care is cheaper. Then keep trying to make a mass-produced product that helps everybody…never realizing that patients need more access to doctors, instead of less. And never realizing that their business model is fatally flawed.

    Congratulations to Kerry on discovering more about what hurts and why. It’s the only possible way to reduce pain intelligently and purposefully.

  40. Sheryl Donnell at 7:34 am

    I certainly hope this works for you with the kind of pain you have. I would really like to hear back from you in another year or two. Very often we get caught up in the excitement of a different path of treatment only to discover that it truly hasn’t been working. I have done more injections that you describe than can be counted already while on an opioid pain pump with oral opioids for breakthrough pain plus a dual usage spinal cord stimulator, and a variety of other medications while having tried every tool in multiple top rated pain clinics boxes. You state yourself your quality of life is far worse. I don’t have the luxury of going down much at all without being bedridden 24/7. So,while this may be working for you now, please consider that your story may not be typical of the majority of chronic pain patients fighting for access to their medications.

  41. Gina at 7:22 am

    My pain meds of six years have been chopped into over half less. I meet with an anesthesiologist in a week.to be hospitallized for ketamine infusion therapy. I have spoke with 4 out of 5 ketamine patients who say their life is far better off opioid. One man had.25 surgeries from his neck down and years of chronic pain said all.he’d needed this past week were 6 Tylenol. Another man said his mood became better each day he received the 4 day regime of ketamine, after the 3 days of total detox of opioids and his wife was so happy that he was once again the man she had married. Yes I’m in pain today, most angry an a**hole pharmacist overnite became my pain doctor and took my quality of life, pretty much forcing me to agree to this ketamine experiment. The way we are treated is what needs to be changed before some chronically sick people commit suicide or decide to kill a care provider who has caused them a spiraling depression and much rage. We did not ask to lose our joy filled lives and become sick. The diseases picked us and changed our lives for the worse. I was working 3 hours a day. About to lose my home and unable to work I’m a veteran, and not one provider cares my dog and I will be looking for affordable rent. Rent they will.help a veteran but forget it if you own a home you must lose it for help. This country is a mess and sick veterans make for high paying civilian jobs where smart alec pharmacists need classes in courtesy!

  42. Lisa at 7:08 am

    I hear you, I want you to know. What about those of us who already had the good care you are just now receiving? Take steroid injections (ever talk to those with Arachnoidoisis from those procedures?), I had surgery (ever talk to the millions with RSD/CRPS from simple good surgies made the body turn on it’s self w/ horrific pain?). I too tried alternative therapy/regular medicine/PT/labs/MRI’s/EMG’s. I will give you that, they did not find all the answers. Yes, I had some idiot Dr’s along my path who didn’t listen, ok too many, but I also had some very good ones who did. I have not stopped looking for what’s wrong, but would I still be able to look bedridden screaming into my pillow? I truly think not. If I can be fixed, oh yeah, my pills are getting thrown away. But I won’t ever take them from someone else to get their chance to look to find a doctor as you have found…one who will listen, look & actually do an exam. I just hope for yoursake… If you can’t be “fixed” with lower pain levels & you CHOOSE to have a better quality of life w or w/o pain meds your new Dr will give you that freedom again. Ty for sharing your story, it was a brave move, I hope you suceed!! Lisa Nagy, Chronic Pain Voices

  43. Kris at 6:55 am

    funny I just sat in my primary care’s office crying and asking him to check all my vitamin levels…..I thought of that on my own..my GI problems are a wreck on top of many chronic painful illness’s …but no one listens when I tell them to look and stool test me and do this test NO they say

    so my doctor said yes to the blood work but forgot my labs..when I called to have them fax them over he said wait for the GI doctor he may want to order you more..

    after hearing this story I am going to talk my my doctor I see him Tuesday and I am going to ask him to blood test me for every vitamin deficiency on my list…..I have said forever and I will swear by this that is insurance and the government would stand behind natural doctors I think we would all be healthier…sadly people like me disabled and on SSI can not afford to so that route ….

    And I do believe the FDA should regulate supplements and cover them by insurance.

    Our whole medical society needs to be shook on their heads! I do not even have the option of medical marijuana in my state…I am given baby norco 5’s 3 times a day for my back and neck and that does not even start to touch the pain I feel from my bladder disease and vaginal infections of over 3 years….OH I tell my story each letter written that I am stuck on my couch with a heating pad between my legs and I have the deep purple vein marks to prove it …from too much heat…and now I cry because I am done putting on a strong face for these doctors so I cry my real tears I cry every day at home…

    I asked my doctor yesterday what if it was your wife? your sister? you child? your mother?

    He shook his head and said I just don’t know….He has been my doctor forever..I love him..and he knows me very well…This is the first time he ever say me break down in real tears and I told him, I told him what I tell my mental health team..If I am stuck on the couch in pain and cannot do anything…..is that life? and if not? what am I doing here? and then I ask …how long would you live like that? 1 year? 2 years? I said do not worry I am not killing myself today…but if someone does not get me out of pain and I do not care how they do it ..I am going to kill myself….April 8th I went through a complete total radical hysterectomy because they swore with my endometriosis that it would fix 80% of my pain…nope …not only did it not fix it..I now have leg cramps to the extreme every day where I sit in baths , Put ice on heat on..walk..sit..lay…nothing stops them….THANKS….for the help doc!

    I just want to see a movie…go out to eat..and NO I DO NO WANT TO BE ON PAIN MEDS. I don’t….but I would if it gave me a life….It surely would…

  44. Therese at 6:46 am

    This article gives me mixed reactions, the most predominant being that we have lost the war and might as well accept it. I personally have never experienced breathing problems from my opioids, nor heart palpitations or sleep apnea. Were you nearly as unsteady, done for the day, and feeling ready for a wheelchair when you were on a therapeutic opioid regimen? Trigger point injections that made you feel as if you had “laid down in a bed of scorpions” do not sound at all promising to me, and seem to be a part of the very kickbacks this physician is railing against, more dollars for his practice at the very least. I also question the need for “full blown medical marijuana.” I’ve not read the book you mention, but am well aware of the major adjustments required when intractable pain rears its ugly head, particularly at younger ages. Do we really need another drastic obstacle on top of all that, and a fresh host of questionable alternatives to try when maybe some of us were just beginning to fully accept and learn to live with our new limitations? I do believe our stories should be listened to, but this just smacks of resignation, plain and simple. And maybe, unfortunately, it is indeed time for that. I apologize for sounding angry – I sort of am.

  45. Kris at 6:40 am

    Addendum: I forgot mindfulness meditation!

  46. Christine Taylor at 6:25 am

    I agree about doctors looking at test results and deciding they are OK because the lab values are considered within normal limits when instead they should take into account the patient’s symptoms. My fatigue and shortness of breath began when my hemoglobin and iron was near the bottom end of normal. Numbness and weakness also began when B 12 was low but also considered normal. The symptoms should always be taken into account when interpreting blood work and other tests.

    I don’t understand why the writer would be having withdrawal issues though if he is being weaned off slowly. A gradual tapered reduction should result in little to no ill effects if the medication was being used properly.

    I do not think most people are demanding a certain type of treatment as most have tried a combination of remedies before even adding opiates. Opiates are usually added after everything else has been tried.

    I believe this article adds to the stigma that people only want opiates as apposed to needing them and that they are impaired as a result of taking the medication.

    I too had successfully reduced my medication but it was because I had my pain under control. I learned what worked and when. My opiate use decreased by more than half. I found that exercise relieved my back pain, Lyrica tackled my nerve pain, face pain and migraines( I use only during flares) . I use anti-flammatories but limit it to one week intervals. I take diltiazam to combat pain due to Raynauds and various supplements along with singular and nasocort. Other times if I do not need to be up and I am in pain, I just rest without medication and leave errands and house work for another day.

    I tapered the dose without the terrible withdrawal symptoms but I can tell you there is no difference in my cognitive function. I did not feel clouded taking the high dose of opiates and I don’t now either with a low dose. I goes days without a narcotic and feel the same level of cognition either way. If one is experiencing chronic pain and is taking an opiate at the correct dose to address that pain then they do not feel a high, they should just feel less pain.

    I am not sure how the writer feels he is “better off” when he describes the pain quite vividly. If one can barely function how is that “better off”?

    The writer also connects people focusing on opiate use only and not chronic pain. Celebrity abuse of opiates and their resulting deaths is a completely different issue than chronic pain. Celebrity death brings media and media makes huge amounts of money as a result. Chronic pain isn’t sexy and it doesn’t sell newspapers nor bring viewers to the television. That is why people are focused on opiates.

    THC in natural form, or synthetic, has its own side effects. It is still a drug and works much differently. For some it is the muscle relaxant effect that relieves the pain. For others it calms nausea. It is not suitable for all types of pain just as opiates aren’t.

    The writer stated what this doctor did when he was told about the heart palpitation and laboured breathing, does that mean that he told his family physician about them and he did nothing? Did he tell his family physician about sleep apnea as well? If so, that is not likely reflective of the care many of us received. In fact, I would be hard pressed to find a person suffering from chronic pain who has not been through a series of tests and comprehensive treatment. From my experience and from most other stories I have heard, throwing opiates at the problem was the last resort.

    I am happy to hear that the writer is beginning to get his pain under control but I am very disappointed in the tone of this article. It portrays opiates and most general physicians poorly during a time where people cannot get the relief they need.

  47. Kris at 6:22 am

    I’m 57 and have had 2 failed back surgeries. I’m chair/bed bound without opioids. My pain provider sees me as a whole person, trying to maximize my health in recommending new modalities and encouraging continued treatments: supplements, chiropractic, psychological therapy, aqua therapy..I cry in pain all the way home after most sessions.., a urological consult, Reiki treatments, lab work to maximize vitamins, minerals and metabolic function (prior to this, you name it, I’ve done it..acupuncture, physical therapy, massage, injections etc., etc.).
    My point is that my quality of life has increased while, unfortunately, my overall back pain has not decreased.
    I am grateful that she sees me as a whole person, not just a drug seeking chronic pain patient.
    Even some doctors are buying into the hyperalgesia (rare and difficult to prove) excuse for decreasing opioids and using a lot of pseudoscience in their defense of decreasing opioids. I’m glad she’s not but I know it’s just a matter of time.
    I wish you well in your journey!

  48. Jess at 6:10 am

    Not helpful at all, you are giving everyone the impression that reduction is always correct and right for everyone,not to mention the fact that opioids do NOT cause increased pain in everyone if at all.

  49. Catherine Sutton at 5:39 am

    My biggest complaint is that my medical practioner spends 5 minutes with me, putting info in my file through the computer. She does not listen. She thinks every problem I have is because of Fibromyalgia when I know there are other issues which should be addressed. I have to make suggestions for tests and treatments. I go to a clinic and can’t afford any better care. I know I am not alone.

  50. Ms at 4:41 am

    If other treatments worked i dont think most of us would even be on opiods in the first place. I felt like i needed less meds when i didnt work for a fee months and moved back to florida but that is the ONLY TIME in 6 years I HAVE felt any better but it didnt last because now i am on my own get no help w anythinf and ssdi isnt enough so i HAVE TO WORK.

  51. Ms at 4:39 am

    Injections dont last more then a few weeks wgen someone is forced to work and most wgo are on opiods have already tried everything else and need them to function. I cant even afford to fo get a massagr obe of the few things that slightly helps me even if insurance Medicare covered that its useless becasue i cant live on ssdi alone i HAVE to wotk PART TIME in agony while still being worried sick about money and bills . if i get my opiods taken i will end up in a homeless shelter because ive got nobody but my cat.