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Last updated: Fri, Jan 10, 2025
Birth is painful, old age is painful, sickness is painful, death is painful.1
State of Pain is the current draft of my analysis of the problem of chronic pain and its treatment.
This book is about having pain and about being treated for pain, particularly what is called "chronic pain," which is very often not only chronic but more-or-less permanent. The book draws upon two aspects of my knowledge and experience of pain: First, it is motivated and informed by my own experience of pain treatment by MDs, Nurse Practitioners, Physical Therapists, Psychologists, Psychiatrists, and so forth. This includes multi-year periods during which I had regular opportunities to compare notes with other patients who also suffered from long-term and difficult-to-treat pain conditions.
Second, it is informed by my research into pain and pain treatment, which in turn is well-supported by my own professional and educational background. More about my intellectual chops in the next section of this page.
I've been seriously affected by pain for over forty years. As the years passed by I began to invest substantial time and energy researching the science of pain as well as the medical practice of pain treatment. I've learned that living in a state of pain is not simply living with an annoying persistent unpleasant sensation, but is more like living in a permanent depression, void of many of the pleasures that are part of what provides balance to a normal human life.
I've learned that many of the accepted truths about what pain is and what it is not are artifacts of how medicine is practiced or of how the science has developed. Some of these "truths" are more useful to care providers than to pain sufferers. I've learned that many aspects of pain-related suffering that are important to the sufferer are considered secondary to care providers. I've learned that the models of pain that are accepted in the various professional fields are incompatible in important ways that affect the treatment available to sufferers in significant ways. I've learned that medical doctors in particular are called upon to make judgments about sufferers that are scientifically insupportable given the limited knowledge that clinical practitioners have.
I've learned that chronic pain is disabling in some very concrete ways that, sadly, are poorly acknowledged in professional treatment or under the laws. I've concluded that there are important mismatches between the science and practice that could be addressed more effectively, to the benefit of both we who suffer pain and those who work to ameliorate it. I've also concluded that pain is complex enough that misunderstandings about it are a major source of frustration, misapplied effort, and downright errors, both in the clinic and in daily life.
Perhaps most importantly, I've learned that pain is widely and generally misunderstood. I'm tempted to claim that it is complex beyond our abilities to understand it well, so that clear scientific understandings are commonly replaced by simplified folk understandings, including by well-trained professionals. In addition, our understandings of pain are clouded by concepts related to moral responsibility.
Not all my claims will turn out to be confirmed in the progress of our quest for understanding, but these "learnings" of mine cast a very different light on the quality of pain care and on the types of support that are truly needed by chronic pain patients.
I am one of millions. My life has been profoundly impacted by pain, and by all indications it will continue to be. Like each of my fellow sufferers, I'm neither the most-affected nor the least-affected; my experience is both unique and shared.
This book began as a reading project. As the impact of pain in my life grew, my sense of the importance of understanding it also grew, and so I began to read about the science of pain. What I read lead me to re-evaluate what I had heard from my care providers. Eventually it lead me to skepticism, then criticism, of the ways that chronic pain is dealt with in the medical disciplines and by the people we interact with outside of the clinics. This criticism is, as I see it, a good thing. It suggests that a nicer life may be possible for pain patients in the future.
It isn't an easy thing for a pain sufferer to immerse himself in the study of it, nor to focus the energy needed to organize and communicate coherent thoughts about it. Despite the difficulties I've had with the writing, I have proceeded with the book. A major motivation is that very little material contributed from pain sufferers is available to other pain sufferers, nor to care providers. In fact pain sufferers seem to have very little input into how pain medicine is practiced either in general or specifically.
I believe that I am well-qualified to speak about pain to other pain sufferers. I have had life-affecting levels of pain over a span of over forty years. I first felt low back pain about the time that I started college. At age 25 I had a series of three athletic injuries that each appear to have torn one or more of my low back ligaments. I developed severe radiculopathic (nerve root) pain at that time. That pain eventually subsided, leaving me, however, unable to run or to engage in most sports. Over the years I've had five different low back operations, a wide range of procedures and many types of therapies, a larger number of assorted care providers, and two additional major bouts of radiculopathic pain.
I've had to gradually give up activities despite doggedly following therapeutic and exercise recommendations, losing one activity after another prematurely throughout my adult life. In 2001 I realized that I could no longer put myself and my family through the pain of working, and retired disabled. In 2013, following a "successful" lumbar-sacral fusion, I could no longer endure walking. Since then I spend most of my time lying down to protect my lower back. I get myself up and dressed some days. I no longer sit up for dinner. My dear wife does the shopping, cooking, cleaning, and yard work with essentially no help from me. (I try to pick up after myself.) I rarely leave the house except for medical visits. I am able to use a notebook computer for an hour or two a day by laying back in an expensive recliner.
Despite my disability I had a long educational and working career. I earned my bachelor's degree in Industrial Engineering in 1977, a Master's in Business Administration in 1987, and completed most of the course work for a Ph. D. in Systems Science before pain made that untenable some years before my early retirement. My work experience is varied. I worked first as a management analyst in a large state bureaucracy, advising management on the design and management of complex processes, then in the private sector in various capacities with business systems, computer software and systems, and finally in instructional design and technical communications.
Three major themes run through my education and work. (1) Engineering, and to a somewhat smaller degree, business administration at the Master's level, are about the disciplined application of science to real world problems. In this sense they are like medicine, which attempts to apply medical science to improve patients' lives. Good engineering requires a strong understanding of scientific disciplines and techniques, as does good medicine. (2) My major fields of experience all involve systems (in the broad sense of the word) that involve the functioning of people within a usually-complex environment of sociology and technology. This is true of the complex manufacturing and service systems that Industrial Engineers and MBAs tend to work with. In fact, the human elements of these systems are often the most critical in terms both of efficiency, of effectiveness, and of human impact. (3) Communication is a key part of all of these fields.
I have no medical background except what I've picked up as a patient and by reading. I have studied a number of the books that care providers commonly recommend to their pain patients, but most of the material for this book has come from textbooks intended for medical students at various levels and from published scientific research. My undergraduate studies included a large amount of social science before I settled upon engineering. This includes some sociology of science, which concerns itself with how the institutions through which science is organized shape scientific findings. I rely largely on my training as an engineer for my understanding of statistics in general and the design and evaluation of experimental evidence in particular. My MBA work was largely about the behavior of people in organizations and the behavior of organizations. My Ph. D. work was in Systems Science, that is, the science of complex systems in general. The systems by whch pain science is conducted and pain medicine is delivered are examples of the type of complex system that a Systems Scientist might root around in.
Why should anyone read a book about a subject as solemn and dry as chronic pain? I think I can offer a good answer, which varies depending on your role in life and on pain's role in your life.
This is the simplest argument. If pain is a major factor in your life, you may find it worthwhile to spend some time looking at this. Questions of what pain is, what causes pain, what can realistically be done about it, and related questions are important to you because the answers are also answers to more-basic questions about your life. Unless your pain is congenital, those answers have changed because of your pain, and you must become a different person in response to your disability.
Many chronic pain sufferers are likely to be pain sufferers for a long time. This reality dawned upon me quite gradually, mostly because time passed and my situation failed to improve despite best efforts. To a great extent this wasn't told me by my caregivers, except sometimes in frustration, but the statistics show that it is true for a lot of people. There simply aren't good treatments for many chronic pain conditions. While your care providers deal with your pain mostly in twelve-minute visits, you have a life to plan and execute.
One of the things about my pain that most bothered me for many years was the vagueness and ambiguity of the information that I received from doctors. This feeling appears to be very common. I've found it helpful to understand both why pain is difficult to treat, and why it is difficult for doctors to explain well.
Even if you're relatively new to pain, you've probably noticed that all sorts of theories float around about pain: what causes it, how we should respond to it, and so on. Some of these theories are fairly negative toward pain sufferers, and all of them affect how people who are important to you, whether emotionally or instrumentally, treat you. These theories, as they affect our treatment by others, affect us. These considerations have led me to look at this variety of theories, where they come from, and what basis in truth they have. You may hear, for example, that most chronic pain is defeatable through the efforts of the afflicted, or that your mood can increase or decrease your pain. How much in those claims is truth and how much is based on non-scientific beliefs?
Pain changes you in a number of ways. (Although some theories claim that it needn't.) If you, like many, are in this for the long haul, the changes may be severe enough that you will need to adapt yourself to a new state of being that you didn't ask for and haven't been able to change. You will need answers to a new set of questions:
Stoic, angry, resolutely cheerful, disappointed, unaffected? Grateful, resentful, or entitled? Independent or seeking help? Accepting, struggling, or denying? You will and have received input about this, some of it very good, others totally off-base. Adapting to a changed set of abilities and vulnerabilities, perhaps suddenly, would be a challenge even for someone in fine health. It will help you to know whatever you can learn about your own condition. It will help you to know whether someome, well-intentioned though they may be, is speaking truth or error.
If you are a pain care provider, you've mastered an approved curriculum and you've been certified, so why should you entertain the ideas of a pain patient? Weren't you taught what is true and scientific?
Well, yes and no. With luck (and as the result of much hard work), most of what you were taught was true then and much is still true now, depending on when you learned it and how much effort you spent on it. BUT many of the principles that stand behind the way that pain medicine is practiced are based not upon science but upon social and economic considerations. Your professional field is remarkably conservative as a social institution, and many of the basic understandings of pain that you've received via your training are based on analysis that was questionable at the time it was enshrined and that merit systematic rethinking in light of new physiologic and psychological understandings. Continue reading for details.
How well did you learn pain science when learning was your preoccupation? I've not been to med school, but I can say that the pre-meds I lived with were much too focused on "learning" gigabytes of information, not to mention too poorly-informed to actually criticize the evidence and rationale behind major medical concepts. I've not been to med school, but I know, from reading your professional materials, that many doctors are not equipped to be insightful about statistical assertions.
Maybe none of the above strikes a chord, so perhaps consider this: How many of the pain patients you see are pleased with their treatment? Or, looking at the same situation from another's point of view, how many of your patients seem to react reasonably to what you say and do? How many spend psychic energy wondering about your behavior? I hear you saying, "It's the patients." But perhaps it's a lack of understanding. What is the cost to your patients?
Many things around pain are complicated, and many of your patients would have trouble in the clinical environment even if their burden of pain could be magically lifted. But it's not so complex that many non-MDs can't make discoveries from the literature that would escape you because, not in spite of, your training. (If this assertion seems paradoxical to you, it's another reason for you to continue.)
Perhaps you are a pain care provider without the benefit of the preparation that MDs and LPNs receive. I worry about Physician's Assistants particularly. They are exposed only to a limited amount of clinical lore, and are to a great extent dependent on principals who are over-extended and frequently not good at communicating complexity. The PAs serve as gatekeepers between doctor and patient and make clinically important decisions each time they decide what to pass through to their principal(s). But the lowly CA also affects the well-being of pain patients. It is important that they, too, avoid harming patients who have too little experience that is positive. It is important that pain patients seeking help not find abuse. (And what is harmful to a pain patient is far from common knowledge.)
True progress in the context of an institution (yes, your clinic is an institution) requires old beliefs to be replaced by better ones--ones that provide better outcomes to the patients. Research comes out of labs, but behaviors come from people within institutions. Sadly, the denizens of the institution have interests and points of view that differ from those whose agents they propose to be. This is an important reason that positive opportunities may be hidden from those who design and inhabit the institution.
Do you interact with anyone who suffers from chronic pain? (Yes, you do.) I'll fashion my remarks on the assumption that you want to have a positive impact on the chronic pain sufferers whom you encounter.
It may seem obvious to you that chronic pain sufferers have different needs and abilities than yours, but it certainly isn't obvious to all. Even if this idea about needs and abilities is obvious, it's far from obvious what implications that idea has for you or for the pain sufferer. Pain is so common that we all feel we have an understanding of it, but that simple truism obscures an underlying truth that pain comes in many varieties. Your understanding based upon your personal history is prone to mislead you when you try to apply it to other people with other experiences of pain.
What is the "right" or "best" way to interact with a pain sufferer is far from agreed upon. Claims of pain-related disability are necessarily accompanied by the possibility of malingering, gold-bricking, in a word, "cheating." Who wants to deal with that? Even setting this concern aside, assuming that one is satisfied that the pain sufferer is legitimately suffering, how should others react to that person in general, or in particular situations? That question is disputed among those whose role is to provide aid. Some claim that it is best to treat the pain sufferer as if they aren't suffering. They have a theory of the case that supports their position and sees some types of help as well-intentioned yet damaging to the recipient. On the other hand, some pain conditions are generally acknowledged to create a need for special treatment, with its own rationale.
This is a difficult problem, and the medical care system as it exists provides little help with it. That leaves the problem up to the pain sufferers on the one hand and the world on the other. I believe that this is an area in which Increased knowledge can make a great positive difference.
Pain conditions differ widely in the extent and types of disability they cause. Many conditions, including mine, make normal life unavailable. This is a problem for me because normal life is the only type of life that I could see or understand for most of my life. I still aspire to normality. When you can't "walk it off," it makes a difference. If you can't travel, it cuts down on your social interaction. That makes a difference. If you can't count on your pain system to give you accurate information, that's a problem, whether your system exaggerates or hides your bodily state from you. And on and on. Chronic pain conditions often arise well into life and frequently they are progressive. This presents an ongoing problem to the pain sufferer (and, if they are lucky, their collaborators) of resculpting their activities and their aspirations. It's somewhat as if the debilitation of aging is extended. This is all on top of the pain itself.
The advent and progression of long-term chronic pain conditions is similarly a recurrent or on-going problem for family and associates of chronic pain sufferers. The social psychology of this is difficult, as are the economics. On one hand is the sufferer who is under sometimes extreme stress, and on the other those others, family or work, who don't understand what's happening, may be skeptical about it, and are unlikely to find the changes welcome.
When I first came under the care of a pain clinic they paired me up with a Psychiatric Family Nurse Practitioner who I saw for an hour once a month for well over a year, perhaps as long as several. When we came eventually to a time of less turbulence and I made arrangements for a different care provider, she wished me congratulations. She told me that very frequently patients in my condition would not make it as long as I already had without losing their family. This, I think, speaks to the amount of social stress that often accompanies chronic pain. The fact that she never talked with my family or about my family speaks, as I see it, to a great blind spot in the care systems for chronic pain. It's very important for family and others to have realistic and helpful knowledge about pain.
This site is not complete, but I thought it good to share it for a couple of reasons. First, if there is to be any value in what I have to say, it must be available to you. Second, the site invites you to comment on what I have to say if you care to, and I'm hopeful that such comments will help to correct any errors and to broaden the perspective of my analysis.
If you are relatively new to pain, I suggest that you read the following page by clicking on the "Next" link below. There I provide some "first aid" advice for you. This book isn't intended as medical advice, but I do advise you to take your condition seriously. Some useful first steps are listed therein.
Otherwise, begin with the basics of pain science.