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Temporomandibular Joint Disorder https://www.instituteforchronicpain.org Mon, 30 Jan 2023 18:35:18 +0000 Joomla! - Open Source Content Management en-gb Values & Chronic Pain Management https://www.instituteforchronicpain.org/blog/item/111-14values-chronic-pain-management https://www.instituteforchronicpain.org/blog/item/111-14values-chronic-pain-management

I recently came across this blog post in my reading and thought that it would be a good conversation starter. In the post, Mark MacLeod, MD, raises the point that we need to have an on-going discussion about values in healthcare. Dr. MacLeod is on to something here. In his piece, Dr. MacLeod is writing within and about the Canadian healthcare system. However, his point is applicable to any country’s healthcare system. We need to engage in a communal dialogue about our values when it comes to what we should (or should not) do with our healthcare systems.

In such a discussion, values play at least three important functions. First, they serve as guides for our behavior when actively engaged in an activity. In this sense, we might ask whether our behavior is in accordance with certain rules or norms we live by. Second, values serve as goals when engaged in an activity. They show us what we should be shooting for. In this sense, we might ask about the goals that we are trying to bring about when engaged in some activity. Third, values serve as a means to judge how good of a job we did, once we engaged in some activity. They allow us to compare what it is we completed with what it was we were trying to complete. This comparison is the distinction between what is (i.e., what we did) and what should be (i.e., what we were aiming for).

As we go about making our healthcare system(s) better, what values do you think should guide our behavior? What values should we try to attain when making our healthcare system(s) better? What values should we use when taking stock of our healthcare system(s) – i.e., how we are doing right now or into the future?

Taking these questions closer to home, what values should guide our behavior when managing chronic pain? What values should guide us when trying to make the quality of chronic pain management better? What values should we use to judge how well we manage chronic pain? It would be interesting to hear from you. How might you answer these questions?

It would be interesting and helpful to engage in a dialogue about your values when it comes to chronic pain management, and how they might be similar or dissimilar based on your personal or professional experiences, and what country you might be from. Of course, I would also ask that the values of civility, politeness and respect guide our conversation.  

Here are mine.

Professionalism

Call me ‘old school’ but I think healthcare providers should do what they do because primarily they want to help people. Loosely, the definition of a profession is a vocation that involves providing a humanitarian service to others. The primary focus of a profession is that it is a job that helps people: a job that aims to make sick or injured people well (a healthcare provider); a job that teaches people (an educator); a job that protects people and their property (police officers & firefighters); and so on. While a sense of professionalism has remained strong in the professions of education and first responding, professionalism seems to be waning in healthcare, especially over the last thirty years in the U.S. Indeed, in certain circles, talk about how we should be in it to help people can sound quaint.

In the U.S., hospitals, clinics, and provider groups have become corporatized (if I can make up a word). Over the last thirty years, many such groups have become actual corporations. They have shareholders and CEO’s who are not healthcare providers, but rather individuals with significant business experience and training. Of course, some hospitals, clinics, or provider groups have maintained their non-profit status,  but even most of these have become corporatized in their behavior. The bottom line is as important (and sometimes more important) as the health and well-being of those they serve.

The values of corporations and the language of production has permeated our healthcare system in the last thirty years in the U.S. Hospital, clinic, and provider groups, -- even individual providers – are measured not by how well their patients are, but by how productive they are. Monthly quotas and productivity reports are now standard fare for healthcare providers.

Now, don’t get me wrong. There is nothing wrong with corporations. They serve a great function and their primary function is to make money. Again, there is nothing wrong with making money. It’s a great thing.

It’s a matter, however, of what is most valued. As healthcare providers, are we primarily in the field to help people or are we primarily in the field to make money? Are we primarily a profession or are we primarily a business? In the last thirty years in the U.S., we have become primarily a business.

I think we should primarily be a profession.

What difference does it make?

On a societal level, it matters because when healthcare providers are structured and therefore act as a business it leads to a lot of healthcare spending that we all end up paying for in our premiums. Hospital, clinics, and provider groups – even most individual providers – get paid based on productivity. The more healthcare providers treat and test, the more they get paid. Subsequently, the more healthcare providers treat and get paid for it, the more we, as a society, have to pay for it through our insuranace premiums. By incentivizing treatment and testing, we as a society foster an expensive healthcare system.

On the individual level, it matters because it creates a certain tension between you and your healthcare provider. As a patient, you expect your healthcare provider to be a professional – to act in your best interest. However, the healthcare system incentivizes your healthcare provider to act in his or her best interest. Therein lies the tension.

Patients feel it everyday. I hardly have a day go by when I don’t hear from a patient about his or her resentment towards healthcare providers, particularly chronic pain management specialists. They tell an all-too-common story: they have been treated over the years with countless procedures, surgeries, and tests, and have never gotten considerably better; they continue with intolerable levels of chronic pain and disability; subsequently, it has dawned on them that maybe it wasn’t their best interests that were served in this long history of care.

Providers too feel it, at least some of us. They remain concerned about the administrative focus on the bottom line. It’s not uncommon to talk among ourselves and question, “Didn’t we get into the field to help people?’

Truth be told, though, not all of us resent it. As you can see in the news most everyday, many hospital, clinic, and provider groups fight tooth and nail to maintain this system of incentivizing treatment and testing. They would have a lot to lose if it were given up.

One simple step towards solving this tension that patients can make is to demand to see healthcare providers who are salaried. It might take some looking around, but some of the most prestigious healthcare institutions in the U. S. pay their providers on salary, rather than production.

With some notable exceptions (including healthcare providers), most professions are salaried. Teachers don’t get paid based on how many students they teach. Police officers don’t get paid based on how many people they pull over. Fire fighters don’t get paid based on how many fires they put out. Why? It’s because we, as a society, want them to maintain a focus on the good of others. We don’t want to put them in a position of having to choose between their own self-interest (i.e. their livelihood) and the interests of those they serve.  We want assurance, for instance, that the police officer pulls someone over because it was the right thing to do, not because the police officer would stand to financially profit from it.

When you think about it, professions are jobs that have a certain amount of power in society: healthcare providers, teachers, police officers, fire fighters, and so on, have been given power to influence people – hopefully for the good. With this power, we want them to exercise it for our well-being, not their own. We don’t want their self-interest to corrupt the power that society has given them. We need them to primarily serve society’s interests, not primarily their own. As such, society reimburses them through a salary system that keeps their focus on us.

Similarly, you could demand to see healthcare providers who are reimbursed through a salary and, as such, are not incentivized to treat and test you. You will have greater assurance that your healthcare providers are making recommendations based on what they think are in your best interest, not theirs. In other words, you will have a greater assurance that your healthcare providers are primarily acting out of their profession (and not primarily acting as a business).

Evidence-based healthcare

As we attempt to make chronic pain management more helpful, I think we should have as a goal to make it more effective.

How would we do that? A lot of healthcare is done out of tradition (it’s how we were taught) or because it is profitable. But don’t we deserve a higher bar? Indeed, healthcare providers should make recommendations based on what is most effective – not on what they have always done in the past or what will make them the most money.

If you had cancer, you would want the most effective treatment, right? And if the first treatment didn’t work, you would go on to the next most effective treatment, right? Shouldn’t we do that with all health conditions?

The practice of engaging in the most effective treatments first is called evidence-based healthcare, or empirical based healthcare.

How do we determine what is most effective? Well, we need a way that is rigorous – we wouldn’t, for instance, want to decide by just flipping a coin. We would want to put it to a more rigorous test. The testing process would have to involve more than one patient or even a few patients.  Why? It’s because most any treatment works for some small percentage of people. It’s called the placebo effect. So, we need to see what works for most people. In our society, we do this with the scientific method and specifically employing a method of testing called the ‘clinical trial.’ The most rigorous testing occurs when we put together a large number of clinical trials into what’s called ‘a meta-analysis,’ which gets the overall average outcomes of all the clinical trials. The results of clinical trials and meta-analyses are thought of as the most valid and reliable information about the effectiveness of a particular therapy.

So, what difference does empirical-based healthcare make?

On the individual patient level, if you value what science tells us is most effective, then you are more apt to pursue those treatments and therapies that are most effective. Educate yourself as to what is most effective in chronic pain management. The ICP attempts to provide this information on many of its content pages. Ask your healthcare providers whether they know of the clinical trials and meta-analyses that support their recommendations. Don’t be satisfied if they respond with something to the effect of either, “This is how we have always done it” (i.e. tradition) or “We’ve had some good luck with this procedure” and then telling a story about how someone got better with it (i.e., not rigorous enough testing).

On the societal level, when we use the value of empirical-based healthcare, we make chronic pain management more effective for most patients. Patients would be less apt to get recommended procedures that are known to be ineffective (as defined by the afore-mentioned scientific methods). It might also lower society’s health insurance costs (in the form of premiums) because insurance companies would be less apt to pay for procedures and therapies that are known to be ineffective. Less costs to insurance companies means less cost to us, those who are insured.

Integrity

I think integrity is also a value that should guide us as we attempt to change how chronic pain is managed (or change the healthcare system for the better, more generally).  As a society, we need our healthcare providers to walk the walk, not just talk the talk.

Few hospital, clinic, or provider groups would disagree with my three values. Nonetheless, many would fight (and do fight) the consequences of them if these values were really used to guide how we managed chronic pain. There is big money involved, at least in the U. S. Any change in a system, of course, leads to some winners and some losers. If we changed how chronic pain is managed by focusing it on only treatments that have empirical evidence supporting their effectiveness, certain hospitals, clinics, and provider groups would stand to lose a lot of money. Right now, some of the most profitable procedures in chronic pain management are also the most ineffective (as defined by the afore-mentioned scientific methods). Moreover, many individual providers in chronic pain management are paid based on production. A change to a salary system would almost surely reduce an individual provider’s income.

However, it would also necessitate a return to our profession. Healthcare providers would have to be in it, seeing patients day after day, because they primarily want to help people. It is why most of us got into the field in the first place. Our practice, then, would be true to our values. That wouldn’t be such a bad thing in my book.

What are the values that you think should guide chronic pain management now, and how do you think we might change it for the better in the future?

Author: Murray J. McAllister, PsyD

Date of last modification: May 20, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Values Mon, 20 May 2013 06:38:01 +0000
From Degenerative Disc Disease to Central Sensitization: A Paradigm Shift https://www.instituteforchronicpain.org/blog/item/110-13from-degenerative-disc-disease-to-central-sensitization-a-paradigm-shift https://www.instituteforchronicpain.org/blog/item/110-13from-degenerative-disc-disease-to-central-sensitization-a-paradigm-shift From Degenerative Disc Disease to Central Sensitization: A Paradigm Shift

Thomas Kuhn, a historian of science, popularized the notion of a scientific paradigm in the second half of the 20th century and since then almost every significant change in a field of study gets characterized as a paradigm shift. So, it is a bit of a cliché to talk of the paradigm shift that is going on in the field of chronic pain management. Nonetheless, it is true. We are actually witnessing it happening.

The field of chronic pain management is undergoing a change in both how we understand the nature of chronic pain and how we subsequently treat it. While observable with any number of chronic pain conditions, this paradigmatic shift is most clear in the case of chronic back pain.

For the last twenty to thirty years, we have understood chronic back pain as a symptom of an underlying disease process of the spine called degenerative disc disease. This conceptualization has led to a common view of chronic back pain as a long-lasting orthopedic injury or condition. In the last ten years or so, a competing explanation for chronic back pain has begun to take hold. It is the notion that chronic pain is a nervous system condition, not an orthopedic condition. The condition is called “central sensitization.” It is the understanding that chronic pain results when the nervous system, including the brain, becomes stuck in a persistent state of reactivity, which leads the nervous system to become highly sensitive. The nervous system gets stuck, as it were, in a ‘hair trigger’ mode.

These competing ways of understanding the nature of chronic pain explains the occurrence of chronic back pain symptoms differently. Take, for example, symptoms of back pain that occur with normal movements, like walking, standing, leaning over, sitting down or getting up from a chair. Pain with simple movements such as these is often perplexing to the patient and their loved ones: these kinds of movements shouldn’t be painful, but they are to many patients with chronic back pain.

Those who uphold the view that chronic back pain is the result of degenerative disc disease would make sense of these symptoms by considering the normal movements as somehow aggravating the underlying degenerative changes of the spine. If the onset of these symptoms occurred slowly over time, they might posit that normal movements have become painful because the degenerative changes of the spines are progressively degenerating.

Those who uphold the view that chronic back pain is due to central sensitization would make sense of the symptom by understanding that the nervous system has become stuck in a persistent state of reactivity. This persistent reactivity has subsequently made the nervous system highly sensitive, so sensitive that even normal activities, such as those listed above, are painful. Indeed, the sensitivity can be so great that even simple pressure, such as touch and hugs, can increase pain and mild bumps to the painful area can send patients through the roof.

A number of factors are leading this change in our understanding of the nature of chronic back pain:

  • The proliferation of scientific studies and publications linking the brain and the rest of the nervous system to the onset and maintenance of chronic pain (see, for examples, Apkarian, Baliki, & Geha, 2009; Baliki, et al., 2006; Chapman, Tuckett, & Song, 2008; Curatolo, Arendt-Nielsen, & Petersen-Felix, 2006; Woolf, 2011).
  • The explanatory nature of central sensitization explains not only the chronicity of pain, but also its psychosocial aspects, such as excessive fatigue, insomnia, poor concentration and short-term memory, gastrointestinal upset, anxiety, and depression (Meeus & Nijs, 2007; Wieseler-Frank, Maier, & Watkins, 2005; Yunus, 2007).
  • Numerous studies show consistent findings that chronic pain rehabilitation, an interdisciplinary therapy that focuses on down-regulating the nervous system, is the most effective form of chronic pain management (see, for examples, Gatchel & Okifuji, 2006; Turk, 2002).
  • In contrast, the explanation that degenerative disc disease is the cause of chronic back pain leads patients into the mistaken belief that their spines are fragile and inevitably going to worsen. This set of beliefs further lead patients to respond with behaviors that are more appropriate to acute injuries -- rest, inactivity, and extended use of narcotic pain relievers. When done over time, these behaviors can lead to fear-avoidance, de-conditioning, and disability (Leeuw, et al., 2007; Vlaeyen & Linton, 2000).
  • Numerous studies show consistent findings that surgical and interventional procedures are largely, though not wholly, ineffective (Gibson & Waddell, 2007; Leclaire, et al., 2001; Mirza & Deyo, 2007; van Tulder, et al., 2006; van Wijk, et al., 2005; Weinstein, et al., 2006; Weinstein, et al., 2008). These procedures presume chronic pain to be the result of an orthopedic condition, specifically degenerative disc disease.
  • While degenerative changes of the spine have some relation to pain, the correlation between such changes and pain is weak to modest, at best (Endean, Palmer, & Coggon, 2011). In the case of chronic back pain, these low correlations indicate that much is left unexplained when attributing the cause to degenerative changes of the spine.
  • Numerous studies show consistent findings that degenerative disc disease is neither inevitably degenerative nor a disease (see, for examples, Carragee, et al., 2006; Hutton, et al., 2011; Jarvik, et al., 2005; Jensen, et al., 1994; Matsubara, et al., 1995; Takatalo, et a., 2009).

Knowledge in science advances when both different investigators consistently come to similar findings and, subsequently, a shift occurs in how the community of stakeholders sees and understands a particular phenomenon. In chronic pain management, the sheer numbers of data are all pointing to the same conclusion: the notion of degenerative disc disease does not explain the majority of the variance of chronic back pain symptoms, but rather the notion of central sensitization does. In other words, chronic back pain is a nervous system condition, not an orthopedic condition. Presently, we are witnessing this shift in our paradigmatic understanding of chronic back pain.  

References

Apkarian, A. V., Baliki, M. N., & Geha, P. Y. (2009). Towards a theory of chronic pain. Progress in Neurobiology, 87, (2), 81-97.

Baliki, M. N., Chialvo, D. R., Geha, P. Y., Levy, R. M., Harden, R. N., Parrish, T. B., & Apkarian, A. V. (2006). Chronic pain and the emotional brain: Specific brain activity associated with spontaneous fluctuations of intensity of chronic back pain. Journal of Neuroscience, 26, 12165-12173,

Carragee, E., Alamin, T., Cheng, I., Franklin, T., & Hurwitz, E. (2006). Does minor trauma cause serious low back illness? Spine, 31, 2942-2949.

Chapman, C. R., Tuckett, R. P., & Song, C. W. (2008). Pain and stress in a systems perspective: Reciprocal neural, endocrine and immune interactions. Journal of Pain, 9, 122-145.

Curatolo, M., Arendt-Nielsen, L., & Petersen-Felix, S. (2006). Central hypersensitivity in chronic pain: Mechanisms and clinical implications. Physical Medicine and Rehabilitation Clinics of North America, 17, 287-302.

Endean, A., Palmer, K. T., & Coggon, D. (2011). Potential of MRI findings to refine case definition for mechanical low back pain in epidemiological studies: A systematic review. Spine, 36, 160-169.

Jarvik, J. G., Hollingworth, W., Heagerty, P. J., Haynor, D. R., Boyko, E. J., & Deyo, R. A. (2005) Three-year incidence of low back pain in an initially asymptomatic cohort. Spine, 30, 1541-1548.

Jensen, M. C., Brant-Zawadzki, M. N., Obuchowski, N., Modic, M. T., Malkasian, D., Ross, J. S. (1994). Magnetic resonance imaging of the lumbar spine in people without back pain. New England Journal of Medicine, 331, 69-73.

Gatchel, R., J., & Okifuji, A. (2006). Evidence-based scientific data documenting the treatment and cost-effectiveness of comprehensive pain programs for chronic non-malignant pain. Journal of Pain, 7, 779-793.

Gibson J. N., & Waddell, G. (Updated January 6, 2007). Surgical intervention for lumbar disc prolapse. In Cochrane Database of Systematic Reviews, 2007 (2). Retrieved November 25, 2011, from The Cochrane Library, Wiley Interscience.

Hutton, M. J., Baker, J. H., & Powell, J. M. (2011). Modic vertebral body changes: The natural history as assessed by consecutive magnetic resonance imaging. Spine, 36, 2304-2307.

Leclaire, R., Fortin, L., Lambert. R., Bergeron, Y. M., & Rosignol, M. (2001). Radiofrequency facet joint denervation in the treatment of low back pain: A placebo-controlled clinical trial to assess efficacy. Spine, 26, 1411-1416.

Leeuw, M., Goossens, M. E., Linton, S. J., Crombez, G., Boersma, K., & Vlaeyen, J.W. (2007). The fear-avoidance model of musculoskeletal pain: Current state of scientific evidence. Journal of Behavioral Medicine, 30, 77-94.

Matsubara, Y., Kato, F., Mimatsu, K., Kajino, G., Nakamura, S., & Nitta, H. (1995). Serial changes on MRI in lumbar disc herniations treated conservatively. Neuroradiology, 37, 378-383.

Meeus M., & Nijs, J. (2007). Central sensitization: A biopsychosocial explanation for chronic widespread pain in patients with fibromyalgia and chronic fatigue syndrome. Clinical Journal of Rheumatology, 26, 465-473.

Mirza, S. K., & Deyo, R. A. (2007). Systematic review of randomized trials comparing lumbar fusion surgery to nonoperative care for treatment of chronic back pain. Spine, 32, 816-823.

Takatalo, J., Karppinen, J., Niinimaki, J., Taimela, S., Nayha, S., Jarvelin, M. R., Kyllonen, E., Tervonen, O. (2009). Prevalence of degenerative imaging findings in lumbar magnetic imaging among young adults. Spine, 34, 1716-1721.

Turk, D. C. (2002). Clinical effectiveness and cost-effectiveness of treatments for patients with chronic pain. The Clinical Journal of Pain, 18, 355-365.

van Tulder, M. W., Koes, B., Seitsalo, S., & Malmivaara, A. (2006). Outcomes of invasive treatment strategies in low back pain and sciatica: An evidence based review. European Spine Journal, 15, S82-S89.

van Wijk, R. M., Geurts, J. W., Wynne, H. J., Hammink, E., Buskens, E., Lousberg, R., Knape, J. T., & Groen, G. J. (2005). Radiofrequency denervation of lumbar facet joints in the treatment of chronic low back pain: A randomized, double-blind, sham lesion-controlled trial. Clinical Journal of Pain, 21, 335-344.

Vlaeyen, J. W. S. & Linton, S. J. (2000). Fear-avoidance and its consequences in chronic musculoskeletal pain: A state of the art. Pain, 85, 317-322.

Wieseler-Frank, J., Maier, S. F., & Watkins, L. R. (2005). Immune-to-brain communication dynamically modulates pain: Physiological and pathological consequences. Brain, Behavior, & Immunity, 19, 104-111.

Weinstein, J. N., Tosteson, T. D., Lurie, J. D., et al. (2006). Surgical vs. nonoperative treatment for lumbar disk herniation: The spine patient outcomes research trial (SPORT). Journal of the American Medical Association, 296, 2441-2450.

Weinstein, J. N., Lurie, J. D., Tosteson, T. D., et al. (2008). Surgical vs. nonoperative treatment for lumbar disc herniation: Four-year results for the spine patient outcomes research trial (SPORT). Spine, 33, 2789-2800.

Woolf, C. J. (2011). Central sensitization: Implications for the diagnosis and treatment of pain. Pain, 152 (3 Suppl), S2-15.

Yunus, M. B. (2007). The role of central sensitization in symptoms beyond muscle pain, and the evaluation of a patient with widespread pain. Best Practice Research in Clinical Rheumatology, 21, 481-497.

Author: Murray J. McAllister, PsyD

Date of last modification: April 29, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Central Sensitization Mon, 29 Apr 2013 06:29:23 +0000
3 Healthy Ways to Overcome Stigma https://www.instituteforchronicpain.org/blog/item/109-123-healthy-ways-to-overcome-stigma https://www.instituteforchronicpain.org/blog/item/109-123-healthy-ways-to-overcome-stigma

If you have chronic pain, you also have to deal with stigma. Stigma is the disapproval by others for how you are coping with pain. Friends, loved ones, employers, and even healthcare providers can judge you in any number of ways. They might disapprove when you rest or nap, or if you don’t work, or if you take narcotic pain medications. Such critical judgments from others are stigma.

Of course, it doesn’t happen all the time. Nonetheless, it likely happens enough of the time for you to be aware of it or at least its possibility when interacting with others.

Stigma puts people on the defensive. No one likes to be judged. It can lead to shame and anger. In the last post, we reviewed two ways people with chronic pain find themselves defending against stigma. They were:

  • emphasizing the medical aspects of chronic pain and, as such, emphasizing that you have no control over it
  • insisting that you are coping as well as possible given the condition that you have

While understandable, these ways of responding to stigma ultimately back fire in the end.

Let’s look at some ways to overcome stigma that are healthy and effective. Unfortunately, there are no step-by-step instructions for how to do it. It’s actually hard to describe how people do it. The ability to do it, though, involves at least three factors: coming to terms with the moral luck of your chronic pain; developing ego strength; and understanding that no matter how well you are coping with chronic pain, you can always get better at it.

All three of these factors, however, fall under the category of ‘easier said than done.’

The good news is that it is possible. It is possible to deal with social stigma in healthy and effective ways. Most people have to learn how to do it. It can be hard to learn. It takes a lot of practice. And, like most things that take practice, it takes time. Typically, people learn healthy ways to respond to stigma in one of two different types of therapy: in a chronic pain rehabilitation program or in psychotherapy with a health psychologist.

Let’s take each of these three factors and discuss them one at a time.

Coming to terms with the moral luck of your condition

A common response to stigma among those with chronic pain is to deny responsibility for the pain. Say, for example, that your spouse criticizes you for resting too much and not doing enough around the house. A natural reaction is to remind your spouse that you have a medical condition and there’s nothing you can do about it. You didn’t choose it. It happened to you. It’s out of your control. You are simply doing, you might assert, what everyone else does when having a medical condition: you stay at home and rest.

Your argument is that your spouse shouldn’t judge you because you didn’t choose it and it is out of your control. In effect, you are reminding your spouse of an assumption of moral reasoning that we all hold: we cannot be held responsible for something we didn’t choose or have control over. So, what you are basically arguing is that you can’t be held responsible (i.e., judged) for your pain because you didn’t choose it and you are essentially powerless to change the fact that you have it – i.e. you can’t be responsible for something you don’t have control over.

As we saw in the last post, this position has some problematic consequences. If you have no responsibility, it’s because you have no control over the situation and if you have no control, then you are powerless to do anything about it. You stop the disapproval of your spouse (or anyone else) at the cost of maintaining a viewpoint that you have no control and are therefore powerless to pain. It’s a bad way to understand your situation because it leaves you convinced that you are helpless.

It’s a dilemma: how can you overcome being stigmatized without asserting that you are powerless to your pain and therefore not responsible for its management?

It’s an important question because people who cope with chronic pain well see themselves as responsible for managing their pain, and their overall health, for that matter. They take ownership of their health and self-manage their pain. That is to say, they engage in healthy lifestyle changes and ways of coping that make their chronic pain tolerable enough so that they can move on with the rest of their life, engaging in productive and meaningful activities. That’s what good coping looks like.

It’s the chronic pain version of what we all know we should do when attempting to lead a healthy life – assume responsibility for our health and make healthy lifestyle choices, including healthy ways of coping with whatever life throws at us.

While it’s easier said than done, we all know it. We all know that we should assume responsibility for our health and well-being.

But how do you do it when being stigmatized? How do you overcome stigma while at the same time maintaining responsibility for your health and well-being?

Ancient and modern moral philosophers have studied this dilemma and they can offer some insights that I think are helpful for those with chronic pain. The insights involve the notion of moral luck. It’s the notion that much of what happens to us is beyond our choosing, but nonetheless we are still responsible for dealing with it as we go on with life. For instance, we do not choose the family we are born into and we do not choose much of our childhoods, but nonetheless these events have significant influence on us, an influence that reaches far into adulthood. Indeed, our childhood shapes us in countless ways and its influence extends throughout our lives. Were you born into a poor family or a wealthy one? Were your family relationships healthy or dysfunctional? Did you have one parent in your life or two? Did your parents divorce? Were they ever married? Were there any deaths in your family or did everyone remain healthy? So much of childhood is beyond our choosing and in effect is a matter of luck. It’s a matter of luck whether good things happen to us or bad things happen to us. In many ways, these unchosen events shape how we turn out as adults. Despite our lack of choice in all these childhood influences, we are nonetheless responsible for what we go on to do in adulthood. We are all subject to moral luck.

So, how does all this relate to chronic pain and dealing with stigma? You can use the notion of moral luck to understand your condition. It is true that you didn’t choose to have chronic pain, but nonetheless you are still responsible for how you are going to manage it, now that you have it. This way of understanding your condition is helpful in dealing with stigma. You are not to blame for your chronic pain. The stigma is not true! But, nonetheless, you are still responsible for how you manage your pain. And thank goodness too! For if you are not responsible for it, who would be? You don’t want to see yourself as having no control over your pain and health. For one thing, it is not factually accurate. For another thing, if it were true, it would leave you powerless, which in turn leaves you helpless and ultimately hopeless! So, accept the fact that you can self-manage your chronic pain. You just have to learn how. By understanding your condition with the use of the notion of moral luck, you can know that you are not to blame for your chronic pain, but you also know that you can learn to have some modest, yet meaningful, control over your pain.

The notion of moral luck allows you to side-step the social stigma of chronic pain. At the same time, it makes way for learning how to successfully self-manage pain.

Developing ego strength

When you acknowledge that you are responsible for managing your pain, you open yourself up to the possibility of judgment from others. In this post and the last, we discussed how common it is for people to become defensive when judged or stigmatized. Understandably, they become sensitive and angry. In their anger, they deny their ability to control the pain and therefore deny their responsibility for its management. At other times, they defensively assert that they are coping as well as humanly possible, which is another way to respond to stigmatizing statements that they aren’t coping well enough. These reactions are common.

What if, in either of these situations, you maintained your cool when someone questioned how you are coping with pain? What would that look like? Let’s imagine two different scenarios and review what it would be like if you interacted with the other person while remaining grounded.

In the first scenario, suppose someone critically judges you by accusing you of not coping well enough with your pain. You control your sensitivity and defensive anger, and in response assertively state that you do not appreciate the criticism. You ask the person to stop making such judgments. You do not lose it. You don’t cry or let your anger get out of control. Rather, you maintain your cool. Maybe, you acknowledge that everyone can always get better at dealing with problems, like chronic pain, and it may be true that you could learn to cope better, but the judgmental criticism is not helpful. In doing so, you simply state your peace and walk away.

In the second scenario, a healthcare provider begins to talk to you about participating in a chronic pain rehabilitation program. In describing the program, she states that it would help you to learn how to cope better with your chronic pain. Your immediate reaction is to become a little sensitive and think that she is judging you for not coping well enough. For after all, you’ve had a lot of people stigmatize you over the years and your immediate reaction is that your healthcare provider is doing it too. Before you say anything, though, you contain your immediate reaction and think to yourself, ‘No, she’s not judging me… She just trying to be helpful.’ You then ask about her recommendation and you talk about it without feeling offended. In the course of the conversation, you acknowledge that it would be helpful to learn some new ways to cope with pain and to get better at it. By doing so, you get a little vulnerable with your healthcare provider, but, at the same time, you remain strong, as it were, in your vulnerability. You know that it is okay to get help and you remind yourself before rejecting her recommendation that getting help is why you are seeing your healthcare provider in the first place. You remind yourself that everyone needs help, sometimes, and that it’s a mark of strength to acknowledge that you need help and could benefit from learning how to cope better with pain.

In both these scenarios, you demonstrate that you possess ego strength. Ego strength is a term that captures what in everyday language we might call ‘character strength’ or ‘maturity.’ It’s the ability to acknowledge that you don’t know everything and that you can benefit from learning from others. In short, it’s the ability to be in the student role. You can tolerate getting feedback about yourself without becoming ashamed or defensively angry. You take it in and learn from it.

People demonstrate ego strength when they acknowledge that they were wrong about something when apologizing. Workers demonstrate ego strength when they tolerate feedback from their supervisor when discussing how they could do their job better or during their annual reviews. Patients demonstrate ego strength when they acknowledge that they could do better while talking with their healthcare providers about making healthy lifestyle choices.

Now, of course, such discussions are a two-way street. The other person, whether a friend or work supervisor or a healthcare provider, can be more or less respectful and tactful when talking with you about ways to improve what you do. When the other person is good at communicating such information, it is easier to hear. But, you also have a role in such conversations. It’s the role of tolerating such discussions, and acknowledging that you don’t know everything there is to know about the topic, and can learn and improve.

Developing ego strength is also a way of overcoming stigma. When you know that you have room to grow and change, and are truly okay with it, it doesn’t bother you as much when others point it out. When they do it respectfully, your confidence in yourself allows you to be vulnerable and acknowledge that they are right – that you can stand to benefit from working on getting better at coping with pain. When they don’t do it respectfully, your confidence in yourself allows you to tell them that the way they’re talking to you is not helpful – even if it might be accurate in some way. Ego strength allows you to have the confidence that overcomes stigma.

Traditionally, psychotherapy is the place where people develop ego strength. You do so in a trusting relationship with a healthcare provider who helps you to accept feedback about yourself, learn from it, and grow. When it comes to chronic pain patients, such psychotherapy is done with a health psychologist. Developing ego strength also occurs in chronic pain rehabilitation programs, because they have traditionally been a psychology-driven therapy.

You can always get better at coping

In the course of developing ego strength, it becomes clear that the ability to cope with problems, like chronic pain, occurs along a spectrum. There is no endpoint in the ability to cope. No matter how well you are coping, you can always get better at it. This way of understanding coping allows you to overcome stigma.

We have seen how it is easy to respond to stigmatizing accusations that you are not coping well enough by asserting that you are coping as well as possible given the nature of your condition. Now, of course, the stigmatizing accusation is judgmental, disrespectful, and hurtful. So, it is understandable that you respond in some way. But, is this type of response factually accurate?

Patients commonly tell me that they have an incredibly high pain tolerance or that they don’t want to hear about ways to cope better with pain because they are coping as well humanly possible. These kinds of statements cut off the possibility of stigma, but they also cut off all discussion of the possibility of learning how to cope better too. And are they really factually accurate? Have such persons really reached an endpoint in their ability to tolerate and cope with pain? While their reactions to stigma are understandable, I think it is more factually accurate to see that, no matter how well people tolerate and cope with pain, they can always get better at it. There is always room for improvement.

Moreover, there is no shame in acknowledging in acknowledging where you are at on the coping spectrum. We are all in same boat, as it were. Wherever we are on the spectrum of coping, we can all get better at coping with adversity!

As such, it is most helpful to understand the ability to cope as something that occurs along a spectrum of coping, where there is no ideal endpoint. Wherever you are on the spectrum of coping, you can always get better at it.

The ability to cope with problems is like any skill. People don’t reach an endpoint in their ability to play a musical instrument or play a sport. A musician or athlete can always improve, no matter how good they get. The same is true with the ability to cope with adversity. The more you learn and the more you practice, the better you get at it.

So, what do you do when people disrespectfully accuse you of not coping well enough? Well, let’s review. With the help of your healthcare providers, you have worked through the moral luck of your situation. Over time, you have become confident that you are not to blame for your chronic pain, but you have also accepted ownership of your health and well-being. As such, you have been working with your healthcare providers in learning how to self-manage chronic pain. You have developed the strength to be in the student role with your healthcare providers. You have accepted their feedback and insights about you, and have learned from them, and have grown. You now have the confidence to know that it’s okay to be still learning. You know that you have come to cope better and better, but in reality there is always more to learn. You are now hopeful in ways that you haven’t been in a long, long time: you know that your future is one of continuously getting better and better at self-managing pain, as long as you keep learning and practicing. So, with all this hard work behind you, and with your new-found strength and confidence, you tell the people who disrespectfully judged you something like the following: you say that, while it may be true that we can all get better at coping, it is not right to judge and that they should stop being so judgmental. You then walk away without shame or anger, but with the confidence that you are on the right track.

Author: Murray J. McAllister, PsyD

Date of last modification: April 15, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Stigma Mon, 15 Apr 2013 06:30:54 +0000
On the Stigma of Living with Chronic Pain https://www.instituteforchronicpain.org/blog/item/108-11on-the-stigma-of-living-with-chronic-pain https://www.instituteforchronicpain.org/blog/item/108-11on-the-stigma-of-living-with-chronic-pain

Let’s talk about something that is hard to talk about. It’s the issue of stigma. It’s a sensitive topic.

Stigma defined

The stigma of chronic pain is one of the most difficult aspects of living with chronic pain. If you have chronic pain, people can sometimes judge you for it. Specifically, they can sometimes disapprovingly judge you for how you are coping with it. If you rest or nap because of the pain, they think you rest or nap too much. If they catch you crying, they become impatient and think you cry too much. If you don’t work because of the pain, you face scrutiny over why you don’t. If you go to your healthcare provider, they ask, “Are you going to the doctor again?” Maybe, they think that you take too many medications. In any of these ways, they disapprove of how you are coping with pain. These disapproving judgments are the stigma of living with chronic pain.

Sometimes, this disapproval of how you are managing your pain crosses over to disbelief that you are in as much pain as you say you are. They don’t believe that your pain is a legitimate enough reason to rest or nap or cry or take narcotic medications or not go to work or to go to the doctor. They might think that you are making too big of a deal out of it. They doubt the legitimacy of the pain itself.

This kind of stigma is the source of the dreaded accusation that chronic pain is “all in your head.” It’s as if to say that you are making a mountain out of a molehill.

Stigma can characterize the relationships of people with chronic pain. It can pop up in your interactions with spouses and family, friends and neighbors, supervisors and employers, and healthcare providers.

Patient responses to stigma

Understandably, stigma puts people with chronic pain on the defensive. When people disapprove of how you are coping with pain and subsequently don’t believe that your pain is as bad as you say it is, the natural response is to argue back. “The pain really is that bad… it’s why I have to rest (or nap or cry or not go to work or go to the doctor) so much,” you might say. As such, you counter with arguments that the pain really is legitimate and that how you cope with it really is legitimate. Who wouldn’t? It’s the normal response to being judged. It’s what you do when stigmatized.

Sometimes patients defend themselves against stigma by emphasizing the biological nature of their pain disorder. For instance, they insist that their pain is solely a medical condition and as such it is beyond their control. They see chronic pain as on par with something like strep throat. No one chooses to be ill. It’s something that just happens. It’s beyond the control of anyone.

This way of understanding the nature of chronic pain stops the stigmatizing judgments of others. You can’t be responsible for something you have no control over and if you are not responsible for your pain, then you can’t be held accountable for it. You can’t be judged. Chronic pain just is what it is and it’s not your fault.

While understandable, this way of responding to stigma has some problematic consequences. You buy relief from stigma at the cost of viewing yourself as powerless to get better. If your understanding of chronic pain is that it is solely a biological illness that can’t be affected by how you live your life, then there’s not much you can do about it. At best, you do what you do with other medical illnesses – you rest, stay at home, don’t go to work, take medicine, and rely on your healthcare providers to provide you with any procedures that might make you well.

This way of understanding chronic pain would be all well and good if there were medicines and procedures that would actually make you well. But chronic pain is not like strep throat in this way. There is no acute medical therapy for chronic pain that is the equivalent of a course of antibiotics for strep throat. There are no cures for chronic pain.

Notice how powerless you become if you conceive chronic pain as solely a biological condition over which you have no control. Without the capacity to affect the course of your chronic pain, there’s nothing you can do about it. You relieve yourself of the responsibility that is the target of stigma, and so dodge the judgmental disapproval, but at the cost of losing your understanding that you can positively affect your chronic pain. To be free of stigma, it seems, you give up responsibility and power to affect your well-being.

Another way people try to overcome stigma is by adopting a strongly held view that they are coping as well as one possibly can given the nature of their chronic pain. They counter the disapproval of others by arguing that those who criticize wouldn’t be so quick to do so if they had chronic pain themselves. They would then know that those with chronic pain are doing the best that they possibly can under the circumstances. It’s a way of justifying the need to do those things that get criticized by others: the resting or napping, the staying home from work, the taking of narcotic medications, or the frequent visits to the doctor. It’s as if to say don’t criticize these behaviors as poor coping; on the contrary, they are indicative of the best possible coping that one might have, given how much pain there is.

While understandable, this way of defending against stigma also has some problematic consequences. It can keep patients from getting better through rehabilitation. The model of chronic pain rehabilitation programs are that patients learn how to successfully self-manage pain. They do so by learning healthy lifestyle changes that reduce pain over time and learning how to cope better with the pain that remains chronic. Notice the potential dilemma here. In order to succeed in rehabilitation, you have to make room for the possibility that you can learn how to cope better with pain. But, for those who have been stigmatized for too long, this acknowledgement can be hard to do. Instead, they maintain the stance that they are coping as well as one possibly can. They can subsequently feel stigmatized by the recommendation to participate in a chronic pain rehabilitation program because it implies that there may be some ways that they could learn to cope better.

This sensitivity to stigma can turn a good thing (the possibility of learning how to cope better) into a bad thing (the perception that the healthcare provider is criticizing them for not coping well enough). When patients have been stigmatized for a long time and have come to defend against it by holding onto a view of themselves that they are already coping as well as one possibly could, they can come to anticipate and perceive disapproval even when it is not there. They can come to feel stigmatized if a healthcare provider offers to coach them on how to cope better with chronic pain.

It eventually comes to a sad and unfortunate breakdown in trust.

This unfortunate kind of thing happens everyday in clinic. I’d like to think that I don’t stigmatize my patients. I try to take every measure to show that I don't. To the extent that it’s true that I don’t, it is still common for patients who are new to me to anticipate that I will judge them or disapprove of how they are coping with pain. They subsequently emphasize to me how high their pain tolerance is and how well they cope with pain. They emphasize these views about themselves while acknowledging their need to engage in behaviors that so often get stigmatized: resting and napping, taking narcotic pain medications, staying home from work, and visiting healthcare providers. In effect, they are saying, ‘Despite how high my pain tolerance is and how well I cope, I still have to rest and stay home from work’ (or take narcotic pain medications or go to the doctor). Of course, I attempt to reassure them that I don’t judge them. I attempt to show them that I will work with them, wherever they are at in terms of how they are managing pain. Their trust is often difficult to achieve because their relationships with family or friends or their previous healthcare providers have been marked by stigma for so long. If we don’t build the trust, they can leave upset and feel that I am criticizing them by making the recommendation to participate in our chronic pain rehabilitation program.

Thankfully, there are other ways to overcome the stigma associated with chronic pain. People who are successful acquire an ability to deal with stigma while at the same time understand that chronic pain is something that they can learn to have control over in some modest, yet meaningful ways. In other words, they walk the line of not taking blame for their chronic pain while at the same time knowing that they are responsible for managing their pain and overall health. They also understand that however good they may be at coping with chronic pain, they might always get better at it. They know that there really is no end-point to one's abilities to self-manage pain. The more you learn and the more you practice, the better you get at it. When they do that, they overcome stigma.

In the next post, we will review three ways people become successful at overcoming the stigma of chronic pain.

Author: Murray J. McAllister, PsyD

Date of publication: April 1, 2013

Date of last modification: April 1, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Stigma Mon, 01 Apr 2013 01:01:15 +0000
Your Doctor Says That You Have Chronic Pain: What Does That Mean? https://www.instituteforchronicpain.org/blog/item/107-10your-doctor-says-that-you-have-chronic-pain-what-does-that-mean https://www.instituteforchronicpain.org/blog/item/107-10your-doctor-says-that-you-have-chronic-pain-what-does-that-mean

Your injury was many months ago. You initially saw your primary care provider who sent you to a pain clinic. The provider at the pain clinic who evaluated you may have been a surgeon who told you to come back after you have gone to the interventional pain provider and physical therapist. You subsequently underwent evaluations and started care with each of these providers. You had this procedure and that procedure. You went to physical therapy. You did it all in the hopes that they would find the source of the pain and fix it. None of it really worked, though.

At best, some of them were helpful for a few days or weeks but pain seemed to always return to the level it was previously. So, you decided to go back to the surgeon. You underwent a surgery and followed it up with more physical therapy. Perhaps, you had to go through a revision of the surgery a few months later. Maybe the surgery or surgeries didn’t help. Maybe, your pain was worse afterwards. Or, maybe it helped for a few months, but again the pain returned. Then, you go to another pain clinic and the provider there tells you that you have chronic pain.

What does that mean?

Frequently, definitions of chronic pain characterize it as pain that lasts longer than three or six months and then leave it at that. While the timeframe is accurate, this definition leaves out a whole lot. There’s more to chronic pain than just the time frame. Let’s look at what more there is and come back to the timeframe in a bit.

The understanding that your pain is chronic signals a change in what your providers think is the primary cause of your pain. When pain is chronic, the source of your pain is no longer the initial injury that started the pain. Rather, if your pain is chronic, then the source of pain has become the nervous system. It’s no longer an orthopedic problem, but a nervous system problem.

What happens is that, once having an injury and coming to have pain, the nervous system can change. It can become stuck in a persistent state of reactivity. Over time, the nervous system becomes so sensitive that any little movement hurts. Leaning over hurts. Standing back up hurts. Sitting down and getting up from a chair hurt. Walking hurts and so on. These simple, everyday movements shouldn’t be painful; but they are. They are painful because the nervous system has become stuck in a persistent state of reactivity. This state of reactivity has led the nerves in the area of your initial injury and the corresponding nerves in the spinal cord and brain to become so sensitive that simple, everyday movements hurt.

Patients often come to think that these movements are painful because the initial orthopedic injury, such as to the spine, has made their spine permanently fragile. Along the way, they may have been told that they have degenerative disc disease. This way of making sense of the pain naturally leads you to think that you have a disease that is inevitably going to deteriorate your spine, making it more and more fragile. As such, it’s natural to think that simple, everyday movements hurt because the spine is so fragile.

Over the last several years, however, basic science has studied how commonly degenerative changes of the spine occur in people with chronic back and neck pain as well as how commonly degenerative changes occur in people without back or neck pain. It turns out that degenerative changes of the spine are as common, if not more common, in people without spine-related pain. Basic science has also tracked the natural outcomes of degenerative changes of the spine over many years. It turns out that most of the time degenerative changes get better. Sometimes, they stay the same, but they typically don't get worse.

With such research, we now know that “degenerative disc disease” is a misnomer. That is to say, it is a misleading term. Degenerative changes of the spine are neither a disease nor are they inevitably going to get worse. Now, I’ll save the details and references for another post, because the issue of degenerative disc disease is such a big topic. For now, you can visit the content page on degenerative disc disease at the Institute’s web page.

Suffice it to say that it is not accurate to think of “chronic pain” as a long-lasting acute injury, such as an orthopedic condition of the spine. The initial injury that started the pain may have long since healed. Rather, chronic pain is a nervous system condition whereby the nervous system is stuck in a persistent state of reactivity that has made the nerves highly sensitive. As such, simple, everyday movements hurt.

Besides the term “chronic pain,” researchers and providers call this condition “central sensitization.” The nerves at the site of the injury, say, for example, your low back, are part of the peripheral nervous system. These nerves send chemical information, what we might call a ‘pain signal,’ to the spinal cord and from there the signal takes an elevator up to the brain, where there, it registers as pain in the low back. The spinal cord and brain make up the central nervous system. With chronic pain, the peripheral nerves at the site of your pain, for example, your low back, and the central nervous system have become stuck in a persistent state of reactivity that leads them to react like a ‘hair trigger.’ Any little movement can set them off.

Often, with chronic pain, the site of pain is also sensitive to touch or pressure. Pushing on the area causes pain. A simple bump is likely to cause more pain than it should, were it not for the nervous system’s reactivity and sensitivity. Sometimes, in more severe cases, simple touch can hurt.

Patients with chronic pain are not making this stuff up. It’s really happening and it is real pain. What’s happening is that the nervous system problem is maintaining the pain.

So, when your provider tells you that you have chronic pain, it means that he or she no longer sees your condition as primarily an orthopedic problem, but a nervous system problem. The timeframe of three to six months is important because the pain of most acute injuries subsides after this number of months. Sometimes, of course, pain continues and becomes chronic. In these cases, as described above, the nervous system reorganizes and becomes sensitized. In this way, the pain of an acute injury transitions to the pain of central sensitization, or chronic pain.

So, your provider tells you that you have chronic pain. Now what? Just as your pain has transitioned from acute pain to chronic pain, you must transition your treatment strategies. Under your provider’s direction, you will likely do two broad categories of things. First, you will likely stop undergoing orthopedic treatments, such as spinal injections, surgeries, and physical therapies that are geared towards resolving an injury. Second, you will start obtaining treatments for the nervous system problem that you now have. There are a number of them that are proven effective. What are these?

Before listing these treatments, a brief caveat is in order. A number of treatments are proven effective, but “effective” does not mean curative. We do not have any cures for chronic pain. This fact brings us to another important part of the definition of “chronic pain.” Chronic pain is chronic. The word “chronic” itself means that it will last indefinitely. It doesn’t mean terminal. You won’t die from it. Rather, what it means is that it is not fixable and it is something you will likely have for the rest of your natural life.

Nonetheless, there are a number of treatments that are effective in the sense that they have all been shown in research to either reduce pain or improve functioning or reduce the need for on-going healthcare services, including the use of opioid medications. The known effective treatments for chronic pain are the following:

  • Cognitive behavioral therapy
  • Relaxation exercises, including mindfulness-based therapies
  • Mild aerobic exercise, including pool therapy
  • Anti-epileptic medications
  • Antidepressant medications, particularly tricyclic antidepressants
  • When done altogether in a coordinated fashion, these therapies are called a chronic pain rehabilitation program

The common denominator of all these therapies is that they target the nervous system and reduce its reactivity over time. All of them have multiple clinical trials showing their effectiveness.

Recently, a few clinical trials of yoga and tai chi have been published showing that these too are effective. It seems reasonable given their quieting effect on the nervous system. However, because of the insufficient number of studies, I think it is too soon to draw firm conclusions. My guess, though, is that more studies will come in time and that these therapies will also some day firmly be established as effective. Many chronic pain rehabilitation programs already incorporate them.

Author: Murray J. McAllister, PsyD

Date of last modification: March 18, 2013

About the author: Dr. McAllister is the executive director and founder of the Institute for Chronic Pain (ICP). The ICP is an educational and public policy think tank. Our mission is to lead the field in making pain management more empirically supported. Additionally, the ICP provides scientifically accurate information on chronic pain that is approachable to patients and their families. Dr. McAllister is also the clinical director of pain services for Courage Kenny Rehabilitation Institute (CKRI), part of Allina Health, in Minneapolis, MN. Among other services, CKRI provides chronic pain rehabilitation services on a residential and outpatient basis.

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Pain Clinic Mon, 18 Mar 2013 06:00:21 +0000
What to Keep in Mind When Referred to a Pain Clinic https://www.instituteforchronicpain.org/blog/item/106-9what-to-keep-in-mind-when-referred-to-a-pain-clinic https://www.instituteforchronicpain.org/blog/item/106-9what-to-keep-in-mind-when-referred-to-a-pain-clinic

It would be nice if once you were diagnosed with chronic pain your provider would hand you an instruction manual. It could be titled something like, “How to Navigate the Healthcare System When It Comes to Chronic Pain.”

dmitry ratushny unsplashInstead, patients are typically referred to what loosely gets described as “a pain clinic.” They go and subsequently get care from the pain clinic. As they do so, they usually come to think that whatever care they get is what pain clinics do.

What patients commonly don’t know at this point is that there are multiple types of pain clinics and each type goes about treating patients in very different ways.

What are the different types of pain clinic? Roughly speaking, there are four kinds of pain clinic.

  • Chronic pain rehabilitation programs that provide coordinated, daily, interdisciplinary therapies that focus on self-managing pain, returning to work, and fostering independence from the healthcare system
  • Opioid management clinics that prescribe narcotic pain medications on a long-term basis and aim to reduce pain and improve function
  • Interventional pain clinics that perform spinal injections, nerve-burning procedures, and implantable devices, all of which aim to alleviate pain
  • Surgery clinics that perform spinal, orthopedic, and/or nerve-related surgeries, all of which aim to alleviate pain

Notice that each of these kinds of pain clinics provides different types of care – even for the same condition. Some focus on what the provider can do for the patient, particularly through performing procedures such as surgeries or injections on the patient. Some provide long-term access to certain types of pain medications. Some focus on what the patient can do to manage a chronic condition and reduce reliance on medications and procedures.

When you are first referred to a pain clinic, you might not know that there are various treatment options even for the same condition. I often tell patients that chronic pain management is not like the care that you might receive for strep throat. With strep throat, it might not ever matter what provider you see. Whoever you see, they are likely to treat you in the same way. Largely, there is conventional agreement as to how to treat strep throat. There is no such conventional agreement with the common chronic pain conditions that are treated in pain clinics. Chronic low back pain, chronic neck pain, fibromyalgia -- what have you, they are all likely to be treated differently in the different pain clinics.

So, the first thing to keep in mind when being referred to a pain clinic is that you will likely be referred to one of the four types of clinic. The second thing to keep in mind is that the care you receive is not the only type of care you can receive for the condition that you have. In other words, it’s helpful to know that you have options. If you go to a different type of clinic, you will likely be provided with a different type of care. This point naturally leads to the question of which type of care is the best care for your condition?

The question brings us to the third thing to keep in mind when being referred to a pain clinic. You should know something about the relative effectiveness of each of the different types of pain clinics. From this knowledge, you can decide to get the care that is most effective.

Given that we are talking about chronic pain, it bears reminding that there aren’t cures for chronic pain. So, when it comes to types of chronic pain clinics, effectiveness is gauged by the following criteria:

  • How much a treatment reduces pain
  • How much a treatment increases functioning, such as returning to work
  • How much it allows for reductions in healthcare use, including how much it reduces the need for opioid, or narcotic, medications

It stands to reason that when you are referred to a pain clinic you don’t want to pursue just whatever type of pain clinic that you get referred to. Rather, you can make a more thoughtful decision about which type of pain clinic to go to. From this vantage point, it stands to reason that you want to first go to the pain clinic that has the most effective treatments, as defined above.

The following is a list of resources that you can use to see for yourself the effectiveness of various treatments. For the layperson, it might be easiest and/or most convenient to cut to the chase and focus on the Introduction and Conclusion sections of the articles. You can also print the articles off yourself and bring them to appointments with your healthcare providers. They might aid in the discussions you have about treatment recommendations. (If any of the links don’t appear to work properly, simply refresh the screen for the site that the link brings you to).

When getting referred to a pain clinic, it would be helpful to have reviewed the above information. With this information, it might be helpful to discuss with your provider the following questions:

  • What type of pain clinic are you getting referred to?
  • What other types of pain clinics might be options for you?
  • How did your provider decide to refer you to one type of pain clinic over the others?
  • Is the type of pain clinic that you are getting referred to consistent with your values and goals for care?
  • Is the type of pain clinic to which you are getting referred consistent with established clinical guidelines of professional pain organizations?
  • Is your healthcare provider knowledgeable of the established guidelines of professional pain organizations? (This issue would have to be a delicate and respectful discussion…)
  • Are the goals of the pain clinic realistic for the type of pain you have? (i.e., you might ask yourself, ‘Do I have chronic pain? and, if so, is it realistic to believe that procedures can alleviate my pain?’ or 'Is it realistic to think that I can take narcotic pain medications for the rest of my life?’)

These questions may also be asked of the providers to whom you get referred. You might also want to revisit them with your referring provider later down the road, after you have been seen at the pain clinic.

In summary, you will be better prepared to discuss your care at the pain clinic if you know the following:

  • There are multiple types of pain clinic
  • Each pain clinic may treat you differently, even for the same condition
  • You have reviewed the links above that provide information on the relative effectiveness of the various kinds of therapies and procedures that the different pain clinics pursue
  • You have reviewed the above questions for yourself and have discussed them with your providers

Date of last publication: 3/4/2013

Date of last modification: 9/15/2022

Author: Murray J. McAllister, PsyD 

About the author: Dr. McAllister is a pain psychologist, and founder and publisher of the Institute for Chronic Pain (ICP). The ICP is an educational and public policy think tank. Our mission is to lead the field in making pain management more empirically supported. Additionally, the ICP provides scientifically accurate information on chronic pain that is approachable to patients and their families. Dr. McAllister consults to pain clinics and health systems on redesigning pain care delivery in order to make it more empirically-supportive and cost effective. He is also a frequent presenter on topics of pain care, addiction, and redesigning healthcare.

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Pain Clinic Mon, 04 Mar 2013 12:35:02 +0000
5 Benefits of a Chronic Pain Rehabilitation Program: A Patient's Perspective https://www.instituteforchronicpain.org/blog/item/105-85-benefits-of-a-chronic-pain-rehabilitation-program-a-patient-s-perspective https://www.instituteforchronicpain.org/blog/item/105-85-benefits-of-a-chronic-pain-rehabilitation-program-a-patient-s-perspective

The Institute for Chronic Pain (ICP) would like to welcome a guest post by Jen of Pain Camp. Camper Jen, as she goes by, is the founder of Pain Camp, which is a wonderful blog and website on chronic pain from the perspective of someone who has chronic pain and who has participated in a chronic pain rehabilitation program. Her site, as well as her personal story, is one of how to go from SURVIVING to THRIVING despite having chronic pain. Her spirit is admirable and her testimony is inspiring.

Her guest blog post today is on her experience of the benefits of participating in a chronic pain rehabilitation program. The ICP hopes that you check out Pain Camp. It’s well worth it. In fact, it has recently been nominated for 2013 National Association of Social Workers Media Awards for best website category.

Here’s the guest blog:

5 Benefits of a Chronic Pain Rehabilitation Program: A Patient’s Perspective

I was 35 years old and sitting in my primary care physician’s office complaining of terrible headaches and neck pain. I’d been afflicted with the pain for over a month and there was no improvement despite chiropractic treatment and massage (unlike the times before). I felt like my doctor was not listening to me at all. In tears, I begged for an explanation. Why wasn't the pain going away this time? What was wrong with me?

I was diagnosed with chronic pain syndrome. It was March of 2011. For the following six months, I visited many different doctors and participated in many different types of “therapy.” I had several tests, procedures and medication trials. I was not getting any better. In fact, I was only getting worse, and I had the additional diagnoses to prove it.

After six months of that chaos, I was ready to explore another approach. I had already worked with the interventional pain specialists; opioids were not an option (I’m in recovery); and the majority of my pain related diagnoses would not be improved with surgery at that point in time. The only other thing to try was a chronic pain rehabilitation program (CPRP).

The particular CPRP that I went to was a 3 week-long program. There were eight patients in the program that stayed during the week and went home on the weekends. From the second I entered the facility, I was challenged. I was also given incredible gifts. Here are five of the most valuable benefits from my experience:

1) I’m not a victim! 

I struggled over the first few days with the structure. Despite having severe pain, I was expected to participate in daily pool therapy, exercise in the gym 3x/week, and get to classes (on time). It was clear that staff was not there to pity me, and the environment at the rehab facility was not one that supported a defeatist attitude.

I was not feeling validated in my self-pity so I met with the Clinical Director. She gave me a challenge that turned my perspective around. I was indeed allowed to feel my emotions and be upset (validation). However, I needed to put a time limit on them. I could allow myself a 30-minute emotional meltdown if I needed it and then figure out action steps to move on.

From that point on, I was more open to the information that I was learning in class. I became an empowered patient rather than one that was helplessly clinging to any hope of a “cure”. Yes, I had Chronic Pain. Yes, it wasn't a fair situation. And yes, I still needed to figure out how to live my life partnering with the pain rather than working against it.

2) I’m not alone!

One of my fears going into the program was that I wouldn't have anything in common with the other patients. I was younger and well-educated with a professional career. To my surprise, I did have those things in common with some of the other patients. Even more comforting was spending entire days and evenings with people who were just like me. They understood chronic pain from my perspective. They’d had life changes because of the pain. They were at a point of acceptance and ready to make changes like I was. We were all in the same boat.

The staff told us that they did follow up with the patients many years later. One common theme among the CPRP patients, even many years later, was that creating relationships with the other people in the CPRP was one of the most beneficial points. I would have to agree as I formed two very solid friendships during my time at the CPRP. I still get together with these two women. They understand my pain and they do not judge me. We positively support and encourage one another on the most challenging days. These two friendships were an unexpected and invaluable benefit from the CPRP.

3) I can function!

Before I was admitted to the CPRP, I was going to four to six doctor appointments a week and trying to hold my full-time job. I’d already resigned from my part-time position. I’d given up all hope that I would ever be able to engage in: exercise, housework, cooking, family activities, spending time with friends. These were just extra tasks that I couldn't afford energy-wise. I was miserable. The CPRP taught me that I didn't need to be afraid of exercising. I also learned proper body mechanics for household tasks. I was reminded of the importance of humor and how spending time with my friends again could aid in healing.

4) I will pace!

I have been told that I have a “Type A Personality.” Even with the pain, I was still trying to run my life at the pace of the hare. God help you if you were a turtle trying to slow me down. Over-achiever and giving 100% of my all to every activity in life. In the CPRP, I learned that by holding onto this harried lifestyle, I was making my Chronic Pain situation worse.

In the CPRP I learned it is crucial that I pace and conserve my energy. I have my days when I feel “well” (as well as can be) and then I have my more challenging days. On my “well” days, I need to be mindful of pacing so that I do not overdo things. Energy conservation is the key. On the more challenging days, I need to be mindful of resting and formulating a plan of action to resume activities. This requires more structure in my life and scheduling periods of rest and healing activities. These are things that I didn’t have prior to the CPRP. Making sure I get enough sleep, proper nutrition and restorative yoga is also part of my pacing routine.

5) I have hope!

When I entered into the CPRP, I was hopeless. I didn’t think that my situation could improve. I was depressed. I was anxious. I was full of fear. By participating in the CPRP, I was shown that there is another way of life for those with chronic pain. Yes, my life would be different and would have to change. However, the CPRP taught me that I was in charge of managing this new life.

Of course, there was a process of grieving my old lifestyle. I also had to grieve the loss of my dream to be able to work 60 hours a week, pay off my school loans and retire at the young age of 60. By grieving these losses, I was able to formulate new goals and dreams. I was able to develop hope that I would be okay with my “new” life with chronic pain by my side. I gained hope and that hope continues to grow every day.

While participating in a CPRP was certainly not on my life’s agenda, it was definitely a gift that was given to me. I am grateful that I was able to participate in a CPRP. I learned that I was not helpless, nor was I alone. I was challenged to develop new skills for living my life with chronic pain. I was given a basic set of tools to move from surviving to thriving.

It is my hope that one day the CPRP is the first stop in the patient’s care plan for Chronic Pain, rather than the last. I believe that the CPRP is what offers the most benefit to patients with chronic pain and can get us back to a level of functioning that is productive and has meaning.

Author: Camper Jen of Pain Camp

Date of last modification: February 22, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Chronic Pain Rehabilitation Programs Fri, 22 Feb 2013 14:34:22 +0000
Blogroll https://www.instituteforchronicpain.org/blog/item/104-7blogroll https://www.instituteforchronicpain.org/blog/item/104-7blogroll

Body in Mind - Research into the role of the brain and mind in chronic pain. HealthSkills - Skills for healthy living for health professionals working in chronic pain management. How to Cope with Pain - A resource for those with chronic pain, their families and friends, and for those who treat patients with chronic pain. My Cuppa Jo - A blog that offers insights and practical tips on living life to the fullest despite having chronic pain. Pain Camp - Tools to manage your pain so you can move on with life.  

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Uncategorized pages Sun, 10 Feb 2013 00:30:56 +0000
About the Blog https://www.instituteforchronicpain.org/blog/item/103-6about-the-blog https://www.instituteforchronicpain.org/blog/item/103-6about-the-blog

The Institute for Chronic Pain is a public policy ‘think tank’ devoted to grounding chronic pain management on the principles of empirical-based healthcare. We maintain a health information website (www.instituteforchronicpain.org) specifically for chronic pain and its various treatments.   We bring together leading scholars and clinicians to provide academic-quality information that is approachable to patients, their families, and third-party payers.

On the site, we have extensive information on numerous common chronic pain conditions and the relative effectiveness of their differing treatments. There are also pages devoted to explaining the nature of chronic pain, central sensitization, and common complications. We also maintain this blog. Our goals with the blog are to provide important information on chronic pain and its management, build community among the stakeholders in the field of chronic pain management, and to provide a forum for discussing important issues related to making the management of chronic pain more effective. Blog posts may be written by various members of the Institute for Chronic Pain or invited guests in coordination with the editor, Murray J. McAllister, PsyD. Dr. McAllister is a clinical health psychologist whose career has been focused on chronic pain management. Author's names and date of last modification are noted at the end of each blog post. About blog moderation: Our blog is moderated as needed and posteriorly. Moderators are volunteers. Internet users who post comments on this blog should not be considered as health professionals. Both content posted on this blog and comments should be designed and intended for educational purposes only. It is not intended to provide and should not be used as health-related advice or recommendations. This education should be designed and intended to support, not replace, the relationship that exists between a patient/site visitor and his/her existing healthcare provider. Requests for health-related advice, recommendations or referrals will not be published and will receive no response. You must be 18 years or older to comment on this blog. We remind you that everyone can read and use your comments. You do not have the possibility to erase or edit your own comments.Internet users commenting on this blog must behave with respect and honesty at all times. Repetitively inappropriate comments will lead to the user being banned from this site. Any threatening comment will lead the user to be banned from this site. Internet users may not post any commercial/advertising comment. Internet users commenting on this blog must post information which is true and correct to their knowledge. We encourage you to provide resources (references, links, ...) on health/medical claims when possible and relevant. If a commenter is a health care professional, he or she should make such fact known. Moderators reserve the right to not publish comments that are inaccurate or inappropriate for any reason. Commenters will not receive notification in such cases. Moderators also reserve the right to delete, without notification, any comment they would judge inappropriate or for any other reason. Should you like to contact the moderators, please do so using the contact form of our website. You can access this form here. Date of publication: 2-3-2013Date of last modification: 12-19-2015

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Uncategorized pages Sun, 03 Feb 2013 21:18:12 +0000
Are you ready for a chronic pain rehabilitation program? https://www.instituteforchronicpain.org/blog/item/102-5are-you-ready-for-a-chronic-pain-rehabilitation-program https://www.instituteforchronicpain.org/blog/item/102-5are-you-ready-for-a-chronic-pain-rehabilitation-program

How do you know if you are ready to participate in a chronic pain rehabilitation program?

Chronic pain rehabilitation programs defined

Chronic pain rehabilitation programs are a traditional form of chronic pain management. 

They are intensive, interdisciplinary therapies that typically occur on a daily basis. They coach patients how to self-manage chronic pain and the common secondary stressors that result from pain, such as insomnia, depression, anxiety and stress. They also help patients return to work. Lastly, they help patients to reduce the need for on-going healthcare services for chronic pain.

Criteria for participating in a chronic pain rehabilitation program

Healthcare providers typically use three criteria to determine whether a patient is a good candidate for a chronic pain rehabilitation program. The criteria are the following:

  • Noncancer pain lasting longer than six months
  • All reasonable medical options for the treatment of the pain have been exhausted
  • The patient accepts that his or her pain is truly chronic and needs to learn how to self-manage chronic pain

The third one is the kicker. The vast majority of patients referred to chronic pain rehabilitation programs have chronic pain and have exhausted all reasonable options for their pain disorder. Their providers know it and the patients tend to know it too. It’s easy for both providers and patients to know when pain is chronic. It’s lasted longer than six months, usually for years. However, knowing that pain is chronic is different from accepting that pain is chronic.

Accepting that chronic pain is really chronic

Unlike their healthcare providers, patients with chronic pain face the challenge of accepting the chronicity of their pain. Acceptance is an emotional process that patients go through when having chronic pain.

For many patients, the initial phase of acceptance is fraught with refusals to accept it. ‘There just simply has to be a way to fix this problem,’ one might say at this point. As such, patients commonly continue to seek evaluation and care from specialist after specialist in attempts to find a cure for their pain disorder. At this point in the process of acceptance, the underlying belief is that hope lies in finding a cure and that without a cure there is no hope. Given this belief, it makes sense that patients might know that they have chronic pain (in the sense that they know it is lasting a long time, maybe even years), but yet refuse to accept that their pain is truly chronic (in the sense that there is no cure). For if the belief is that the only way to have hope is to find a cure, then to give up hope of a cure is tantamount to becoming despondent. Hopelessness is a powerful motivator that fuels on-going refusals to give up hope in a cure.

When patients are at this point in the process of acceptance, they are not yet ready for a chronic pain rehabilitation program. They typically don’t succeed in learning to successfully self-manage chronic pain because their motivation lies elsewhere. Namely, their hope lies in finding a cure. They haven’t yet accepted that their chronic pain is truly chronic. They haven’t yet found a new way to have hope.

This observation is not a criticism. It's just that such patients don't meet criteria for being a candidate for a chronic pain rehabilitation program. They have not fully accepted the chronicity of their pain and instead they prefer to seek care other than self-management or rehabilitation.

Accepting that you can't manage pain with opioids for the rest of your life

Difficulties with accepting the need to self-manage pain without opioid medications is another common struggle that gets in the way of participating in a chronic pain rehabilitation program. Many patients have worked through the afore-mentioned problems with accepting that there is no cure, but have found hope through long-term opioid management. They recognize that they have chronic pain and that chronic really means chronic. Nonetheless, they have kept from becoming hopeless by managing their pain with the long-term use of opioid pain medications. As such, they have been able to go on with life even in the absence of a cure.

Some patients in this position recognize that their long-term use of opioid medications is not sustainable indefinitely. They recognize that the medications lose their effectiveness over time. They have increased their dose at different times, but with each increase in their dose, they have eventually become tolerant yet again. They recognize that they can’t periodically increase their dose indefinitely. As such, they understand that the use of such medications cannot be a viable long-term way to manage pain.

This problem of opioid medications becoming ineffective over time is called tolerance.

It too is a difficult problem to accept. It is common for patients to struggle with accepting that the long-term use of opioid medications won’t be effective indefinitely. The implication is that at some point patients will need to learn how to self-manage pain without the use of such medications. Patients commonly struggle to accept that need too. It’s easy to put these problems off and deal with them another day. In other words, it’s easy to refrain from accepting them.

When patients aren't at a point of accepting that they need to do something about these problems, they aren't ready to particiapte in a chronic pain rehabilitation program. They oftentimes don't believe it is possible to successfullly self-manage chronic pain without the use of opioid medications. As such, they don't succeed in learning how to do it in a chronic pain rehabilitation program.

This observation too is not a criticism. It's just that such patients don't meet criteria for being a candidate for a chronic pain rehabilitation program when they have not fully accepted the chronicity of pain and their need to self-manage it.

Acceptance of the need to learn how to self-manage pain

Patients are good candidates for participating in a chronic pain rehabilitation program when they accept both. They accept the chronicity of their pain and the need to learn to self-manage their pain. Of course, they don’t know how to successfully self-manage pain yet, but they have reached a sufficient degree of acceptance that they are ready to learn. As a result, they seek out participation in a chronic pain rehabilitation program and often succeed in their goals – to be able to live well, engage in life and work, while at the same time managing their chronic pain at tolerable levels.

Accepting the chronicity of pain opens up a whole new way of getting better and a whole new way of having hope.

Author: Murray J. McAllister, PsyD

Date of last modification: February 4, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Chronic Pain Rehabilitation Programs Mon, 04 Feb 2013 23:21:04 +0000