Why  I Wrote A Book About Chronic Pain

Why I Wrote A Book About Chronic Pain

By David Nagel, M.D.

Cover imageDr. David Nagel has written a powerful book about chronic pain called Needless Suffering—How Society Fails Those with Chronic Pain. (order here from Amazon). Having read the book, the National Pain Report asked Dr. Nagel to share with us why he wrote the book.

As a specialist in Physical Medicine and Rehabilitation for the past 30 years, I have treated complex medical problems which we cannot cure.  Our goal is to help those we work with adapt to the bio-psycho-social-spiritual challenges they face.  One common denominator of many of these disabilities is pain.  As my practice has evolved over the years, I have come to specialize solely in what some call chronic pain management.  Early in my career, I was inspired by Marion Emerson, MD.  Marion suffered from a number of medical problems she had no interest in telling us about.  She felt that a barrier was merely a challenge to find a way around.  She had found a way around the barriers she faced, and they were in the past.  Her goal was to turn her attention to helping others.  She also believed that medical care only began at the bedside.  Our ministrations must find their way to the community through social advocacy.  And so we followed this 65 yr old diminutive professor around Rochester, New York in a quest to help find a place for those who suffer from the problems created by chronic disability.

I was also inspired by my mother who suffered her entire adult life from the pain of a severely progressive form of Rheumatoid Arthritis. She neatly hid her pain behind an infectious smile, and I learned from her that most patients with chronic pain do suffer, often unnecessarily, in silence.  Despite her pain, my Mom was always advocating for those in need and trying to correct social injustices.  I would argue that the way we, as a society, treat those with chronic pain is a social injustice.  We ostracize, stigmatize, and blame those who suffer for their infirmities because we don’t understand their pain, we don’t have a solution, and it is easier to walk away from them, to abandon than them, than it is to stay and comfort them.

As my pain practice evolved, I truly believed I was making a difference.  Then, about 13 years ago, I was faced with a number of socio-economic challenges to my practice, ones many doctors are facing, and I had to make a choice; do I continue my pain management practice as I saw fit, or do I change to an interventional pain practice?  To this date, I struggle with the decisions I made.  In fact, when I introduced myself to the Pain Action Alliance to Implement a National Strategy (PAINS), I referred to myself as a hypocrite.  I felt a need to write about my struggle, to share my dilemmas.  I also sought to join several public and private organizations in making a change in the way chronic pain is perceived, judged, and treated.  The result was Needless Suffering.  As I mentioned earlier, Marion Emerson taught me that there are numerous social entities beyond medicine that have the ability to help or harm those who suffer.  Together, we form a multi-disciplinary team.  In my years of practice, I was struck by how it only took the actions of only one person or group to ruin the positive actions of everyone else.  I found that many of those people who harm the process are totally oblivious to their actions, and others often put their needs above the needs of those they should be helping.  I felt it was not enough to just identify the needs of those who suffer, but also identify those who have the potential to help or harm.  There are a lot of heroes and villains in this process.  In Needless Suffering, I identify who they are, what they do well, what they do poorly, the gap between, and, most importantly public and private policy solutions to bridge the gap in between.  I begin and end the book with an assessment of the challenges I faced and how I responded.   This book was a journey of personal discovery, and I leave it to the reader to judge my actions.

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Authored by: David Nagel, MD

There are 12 comments for this article
  1. Stephen Rodrigues, MD at 4:09 pm

    Critical Factual Point of Education #1:
    The skeleton cannot primarily be the location of pain without being broken or infected.

    Critical Factual Points of Education #2:
    These terms are all descriptive and not truly diagnostic:
    Fibromyalgia, Chronic Pain, Complex Regional Pain Syndrome, RSD, Degenerative Joint Disease All Headaches types, Migraine, Vertigo, Imbalance, Falls, Weakness, Torticollis, TMJ, Trigeminal Neuralgia, Occipital Neuralgia, Peripheral Neuropathy, Intercostal Neuralgia, Meniere’s syndrome, Postural orthostatic tachycardia syndrome or POTS, Chronic Fatigue Syndrome, Facial paralysis, paralysis or paraparesis, locked up joints like frozen shoulder or hip ie ankylosis, Diabetic Neuropathy, Sciatica, Scoliosis, Spinal Stenosis, Bulging Disc, possible leaky bladder dysfunction, ED, IBS, FM, CFS and some allergy signs and symptoms.

    By default based on the laws of nature and biology, all of these terms, concepts, names all have the
    SAME cause(s): Live, living, falls contusions, and fractures.
    SAME location(s): The associated regions and sets of muscles.
    SAME organ system: The Muscular System
    SAME source(s): IntraMusculare Microscars
    SAME treatment(s): Hands-on Physical Therapy with and without Intramuscular needling.

    Thus spinal fusions are not science-based, evidence-based, logical, moral or ethical.

    I do not recommend these types of suicidal or kamikaze procedures for the treatment of long-term pain anymore – PERIOD.
    Godspeed

  2. Sandy M. at 10:00 am

    I had a hemorrhage in my right thalamus in 2001 and went to a pain clinic for years trying to find medications that would help my pain. The Dr.. wanted me to try some different opioids, however this pain is just horrific, and it never goes away. Finally a few years later this Dr.left so I knew a neurologist thru my previous work as a legal secretary. He had treated me for carpal tunnel deferring me to a surgeon so I trusted him. Thalamic pain syndrome or Central Pain they call it is so rare, doctors never really understand this terrible pain. But this neurologist did! I was so happy. He had only treated 2 others and now me. He told me I needed medication for this pain. I was in bed most of the time and after taking this medication for awhile, I was actually able to get up and it isn’t a real strong medication anyway, just for break through pain but it does help me along with my other medications some and I had Scoliosis also that started to progress so fast, I was back in bed again.Long story short as I can make it, I had already gone thru injections of all kinds before the Scoliosis was finally diagnosed. My pain was unbearable I was so happy to have a neurologist who understood the pain syndrome and Scoliosis pain. I feel so blessed,however he is retiring and iss the only Doctor I know who truly understands my pain. So, I will have to start all over again trying to find a.doctor who will understand the horrible pain I’m in. I’ve been trying to cut back on my medication because I know what I am going to have go thru and I can hardly do the laundry. I am trying so hard but since so many doctors know nothing about this pain syndrome from a stroke, I’m in for a rough time. I’m 68years old, can barely walk, type or be normal even though I look normal. My entire left side feels different from my right side, the pain some days are more than I can take. My muscles hurt and had to fight for a name brand muscle relaxer because the generic does not work. Trust me I would rather pay $10 than $65, but it is worth it to me. I just wish more doctors would understand I don’t take these meds for the high, but for real pain I’ve had for almost 16 years. It is so good to know that you understand what we go thru. Thanks to everyone for listening to my story. I also have had a stent for my heart due to a 90% blockage in my right coronary artery they found while I was going thru tests for my Scoliosis surgery. The Scoliosis surgery was from My T-3 to my LS-51, a complete fusion. I’m thinking of asking my cardiologist at this hospital for a referral to a neurologist there. Thru insurance I am also having to go thru a new primary care doctor also. My husband worked as a firefighter for over 22 years and they’ve taken away our insurance so Medicare is all new to us! All the paperwork is unbelievable. I understand this new primary care doctor doesn’t know me, but My pain is so bad I can only sit at my desk for short periods of time. I wish I never had to take another pill. Maybe someday more doctors will understand pain. I plan to order your book.

  3. Krissy at 4:36 pm

    What wonderful news and how great that you had this experience. I wish the whole world could read what you just said.

  4. Dooney at 8:48 pm

    A few weeks ago I attended a caring award celebration to honor an ER physican. I nominated this physcian, Dr. H, who had treated me a few months back when my pain was out of control. I just couldn’t take the pain anymore even though I despised going to the ER because of previous experiences. He was the kindest, most compassionate, caring, and funny ER doc I have seen in such a long time there. We spent a lot of time just BS’ing about the current situations for chronic pain patients. He treated me as someone who just needed help and nothing else (say if I had diabetes or hypertsion, nor chronic pain). I wrote a small letter to him and asked that it be read for me as I knew I would cry if I read it (I still cried). They were only going to read a portion of my letter but I said no, I want the whole thing read. Because the room was full of other ER docs at their monthly meeting and I wanted them all to hear it. Some of the things said in my letter were how I hadn’t been to the ER in 2 years even though there were many times I could have gone but the emotional pain on how I was treated would have been worse than dealing with the physical. (you know like a criminal, drug seeking, lowlife). And how that emotional pain was made worse by the fact that I have worked at this hospital 20 some years and my pain started within these hospital walls. I told him how much his kindness and treatment meant to me and that I left the ER not only physically better but emotionally better as well.

    As they read my letter, I looked around the room at some of those faces who judged me on other visits, hoping they really heard the emotional pain of my letter. I just wish there were more doctors like Dr. H. out there in the sometimes scary, lonely, terrifying, sad, hopeless world of pain. And I hope I get Dr. H on my next visit…

  5. Krissy at 10:25 am

    This is very good news. Thank you, Dr. Nagel, for writing this book. I look forward to reading it as soon as possible.

    The healthcare in this country has let many of us down. Personally, I need so much care that I can’t have right now, I am actually in danger of dying from heart issues, as my doctor said, “You are one heartbeat away from a heart attack or stroke.” That same doctor offered no follow-up, no education, no referral to a cardio doc, etc.

    And when I look at the problems the country has from the inside (as much as I can as a researcher), I shake my head and think healthy people are indeed lucky, but have no idea what it’s like to navigate our medical system, or lack of system.

    I wonder every day why these pain conditions create such a fight in our lives. It’s bad enough we struggle so much with pain, disease and their side effects. But to struggle with what we lose/have lost — especially when it’s our “loving” friends and certain family members — is hard to accept. Patients do well in trying try to understand each others’ diseases, but healthy people often do not make an effort to understand us, because unless words like “cancer” and “death” are among our conversations, we must be fakers and not possibly in “that much” pain, and of course soon, it will vanish because you’re just fine. Sometimes just a little kindness and acknowledgement is all we need.

    Compassion from the healthcare crowd may be there for a moment in an appointment, but mostly it doesn’t carry one past the closing of the office door.

  6. Drew P. at 9:28 am

    I have to take pain killers due to brain surgery on my Thalamus, which is the pain “center” of the brain. Once that switch is flipped there is no going back. I’ll probably be on pain killers for the rest of my life. I laugh when I hear politicians say they are helping me with “addiction”, but offer nothing to prevent my killing myself when the pain becomes too much to take. I’ve been hospitalized twice when I wasn’t treating my pain with medication. If there is a Hell, chronic pain is surely it. It’s WRONG to impact the lives of those who already are suffering. To think politicians spout the dangers of pain killers to win votes is disgusting and wrong. You wonder why you stop everyone from getting the appropiate pain medication and why there is a surge in heroin use. That’s foolish because the answer is a plain as day.

  7. Mark Ibsen MD at 8:06 am

    Dr Nagel:
    Thank you
    You are NOT a hypocrite.
    In my opinion
    You are a
    HIppoCRAT.
    Inspired.
    Authentic.
    Committed to your Oath.

  8. Maureen at 7:50 am

    Dear Dr. Nagel,
    I received your book in the mail last weekend (I ordered it as soon as it was announced by Ed :), and I’m thrilled that you wrote it. Each time I open I can’t wait to continue reading it!
    For the 1st 25 yrs of my pain management (starting with a lumbar fusion in 1991)
    and especially over the past 12 years since a traumatic MVA that specifically changed my life..I have had proper and excellent management starting at UCSD and then in Stamford CT. Those doctors were surely my ‘heroes’.
    Also, I was a nurse for 34 yrs at that time, disabled since the accident.
    For a time I taught Pain Management to patients over my years.
    I still deal with the shock of not being able to ever work again.
    I moved to Florida 2 yrs ago to be near family for a support system (which basically has unfortunately not happened, to my disappointment) and have been on a journey with my pain management filled with poor treatment (to say the least), emotional trauma and great upset to my long time and well balanced previous treatment that worked best for ME after much trial and error to fine tune it!
    You are the type of physician that I have left behind (and surely not on purpose! if only I could go back in time).
    You know my story well (and it doesn’t end here, that’s for sure) and that is why I am forever grateful that you have written this empathetic, caring, specific, informative and full of great wisdom book.
    I hope that it shines in society and brings light to many, and becomes a tool to bring positive change for us who are suffering at the hands of the ‘villains’ who have no heart.
    Thank you for being you. Maureen

  9. Stephen Rodrigues, MD at 7:42 am

    Thank you, I feel that you are an honorable human being.

    This may shock you, but as MDs, we were trained by the same academics with corrupted knowledge. These scholars were given the “scriptures” in a reasonable attempt to guarantee a standard of care. These professors put their heart and soul into their work. From the academics to the deans of medical schools into the students brains we all were tested and certified.

    This idea or concept sounds very logical and reasonable. If the scriptures were all reality based and able to be changed on a dime, yes, but it is in granite. So, in fact, it is all a very sophisticated criminal minded betrayal of Americans.

    We were brain trained as puppets to follow the scriptures that were handed down from Wall Street. The information that the academics gave us was incomplete, incorrect, biased, bigoted, and devoid of references to all the treatments collected throughout the history of humankind for the treatment of the muscular system.

    We, you and I as MDs, as well as every American, are deceived turned into numbers for sacrifice. The evidence is readily available to anyone who is interested.

    What I’m finding is that no one is interested in correcting all of these lies.

    Everyone, you and everyone here are programmed and interested in ONLY doing their job. That’s how paychecks work; your reward is to stay put or lose your status. That is how capitalism works best. So that is what the majority are going to do. So if everyone follows the scriptures, do their job in lockstep marching over human bodies and spirits – we end up with what we have today.

    If a physician DOES NOT follow the evidence, respect the spirit in the person, comply with the validity of what he’s doing, uphold the honor and integrity of the evidence then they DO NOT deserve to be a physician. “A physician without a knowledge of Astrology has no right to call himself a physician.” -Hippocrates

    A worthy, frank and honorable physician has to talk, touch, care, trust, honor, about the world we live in, all people, patients, and respect all human life.

    If a citizen does not follow those same virtues, they are doing the wrong thing too.

    If you the reader do not respect and want to uphold the integrity of the evidence. Their choice makes you a part of the problem on the wrong side.

    Doing nothing is the wrong thing too. Change takes focused corrective actions, alway altering the course to stay on the right side.

    You have only to trust on the first-hand evidence. Patient’s voices are the first and only source of evidence I trust – today.
    “Whenever a doctor cannot do good, he must be kept from doing harm.”- Hippocrates

  10. Dave at 6:08 am

    Its a terrible thing to see and have no vision and its regrettable the author doesn’t seem to understand the importance of vision or the spirit of those involved in pain care. Worse then that he is fatalistic when it comes to painful conditions which shows his spirit and that of his certaintist epistemic community. Though he talks of multidisciplinary cooperation his epistemic community sought to exclude the voice of chiropractors, nutritionists, energy healers in both the 2011 IOM report on pain care and in the National Pain Strategy. Need I mention that over 25% of people in pain see chiropractors and that 80% of painful conditions are musculoskeletal. So its easy to see thru the occupational strategies of the pain specialists and their attempts to hog the debate. Its clear their main goal is to control pain care not only in the U.S. but via the IASP other countries , as well. Its shameful that they conflate their extremely limited values, beliefs, and practices as sufficient for the U.S. Its outrageous has self serving they are.But worse yet is the purposeful exclusion of the voice of people in pain People in pain were grossly underrepresented in the IOM report and in the NPS. So I can say that this author is elitist and exclusionist, as well. And no wonder why pain care is so poor in America when the greatest stakeholders are othered by the elites via eliminative materialism selfish desire to dominate people in pain and profit from such.
    Pain care continues to have a petty spirit for those involved don’t wish to make the effort to make it much better. Though some have called for prevention- its odd that they failed to call for lowering painful conditions at the same time- yours truly called successfully lowering the prevalence of all painful conditions.
    We know that despite their rhetoric pain specialists don’t wish to work with the rest of society to improve pain care- they wish to act as Platonic Kings- a star chamber that will dictate to the rest of us what we can and cant have when it comes to pain care. They haven’t earned that and yours truly will fight their lack of humilitas, lack of sinceritas, lack of vision, lack of planning skills and lack of democratic values. Not to mention their demeaning comments about being catastrophizer
    Many times I have offered pain specialists the opportunity to debate issues openly in public- but as they know sunshine is the best disinfectant they decline. And until they show much improvement in democracy, humilitas, vision, and planning I will continue to be critical of their great limitations and their failure to hear fully the concerns of Americans in pain.

  11. HJ at 4:58 am

    I wrote to my Senator and got a generic response back about “addiction” when I clearly stated that I was concerned about patients’ access to necessary medication.

    Here’s his reply:

    July 7, 2016

    Dear Heather,
    Thank you for taking the time to contact my office about addiction. I appreciate hearing from you.
    As Chairman of the Senate Finance Subcommittee on Health Care, I am working vigorously to help address the painful toll of prescription drug and heroin abuse. On October 15, 2015, I convened a field hearing of my subcommittee in Pittsburgh to outline a three-prong policy approach to combat this epidemic: reduce the illegal diversion of painkillers; limit the inappropriate use of addictive opioids; and help those battling addiction receive appropriate treatment.
    In particular, I have introduced the Stopping Medication Abuse and Protecting Seniors Act (S. 1913). This bipartisan legislation would prevent “doctor shopping”-a practice by which a Medicare beneficiary visits multiple physicians who unknowingly write redundant opioid prescriptions. S. 1913 would “lock” approximately 170,000 individuals who are abusing and/or diverting prescription drugs to a single doctor and pharmacist for their prescriptions. This bill does not impact the vast majority of beneficiaries who are legitimately using painkillers.
    Thank you again for your correspondence. Please do not hesitate to contact me in the future if I can be of assistance.
    Sincerely,

    Signature
    Pat Toomey
    U.S. Senator, Pennsylvania