When life is topsy turvy

I had intended to write about a piece of research today, but as I read all the news reports about how much life has changed and needs to change more, I’ve decided it’s time to address important issues facing health professionals working in pain management and rehabilitation.

In New Zealand the alert level is at 2 out of 4. I suspect this has been instituted to soften the shock later in the week when we’re asked to completely lock down. We are currently being asked to maintain physical distancing, older folks are asked to self isolate as much as possible, GPs and nurses are being asked to move to virtual consultations, and all of us who can are being asked to work from home.

What is not happening is guidance from the Occupational Therapy Board NZ, or the Physiotherapy Board NZ. Further: ACC has permitted psychology and medical consultations via video links, but not occupational therapy, physiotherapy or the group programme under the Community Pain Contracts.

I’ve watched my massage therapy colleagues in NZ close their businesses because it’s not possible to provide safe therapy in this environment. Video conferencing is, however, completely feasible for occupational therapy and physiotherapy – I’ve been offering services via video for some years now. But apparently we’re somehow not included in those privileged to provide video services? It seems out of step, and perhaps demonstrates how little those making policy actually understand about our work.

I intend to run my next group session (tomorrow) as my last, the 4th week of six. The remaining two sessions will be run by video link. I’ll be working from home except Wednesday morning when I’ll go into work to pick up some things. The University is still arguing that we can go into work – but I work in offices in the Hospital building. I have elderly parents. My partner is immune compromised. I don’t want to distribute bugs from my perambulations to my partner, my parents, or casual encounters in at the Hospital.

In preparation for working from home, I’m returning to strategies I used while working on my PhD. That means maintaining my daily routine – up and about and at the computer by 8.00am. Working steadily through the day, breaking the day up using Pomodoro technique (how many tomatoes can I smash?). I’ll finish the day at 4.30pm. I’ll make sure I have my 5 minute movement snacks, along with glasses of water (and coffee!).

My office is set up with the “Focus” setting so I don’t get interrupted by social media, email, or news notifications. I have good lighting, heating, and a comfy seat. This is my work space. Luckily I can keep it separate from where I relax! I have access to reference books and journals, and I can video conference from where I sit. As usual it’s a clutter, but that’s the way I like my environment!

I suppose what I’m saying is that life will go on, albeit differently. And that adjusting to it means allowing myself to work differently but maintaining some of the habits that keep me on-task and focused. Being disciplined allows me the freedom to work without distractions – oooh squirrel! And I can still stop and notice what is beautiful in my environment.

Kia kaha (stay strong), arohanui (much love), and remember this:

Naku te rourou nau te rourou ka ora ai te iwi

With your basket, and my basket, the people will live

Why reducing pain intensity doesn’t always mean a better outcome

There have recently been some studies published on meta-analyses of “pain education”. I’ve made my stance clear on what I think of “pain education” particularly as a stand-alone intervention here and here and why I think we need to look beyond pain intensity reduction as The Outcome of Choice. In this brief post I want to look at some of the variables that influence both pain behaviour and pain intensity.

We all know that pain is subjective: this means it can’t be directly shared with anyone, and no-one is able to determine just how sore any other person is (that includes people who believe they can spot faking or malingering. Stop it! You can’t, not for pain). What this also means, though, is that for us as clinicians to understand what it is like for another person to be experiencing pain, we must infer on the basis of what they do (ie behaviours).

Mostly with adults, we infer the severity of pain on the basis of the dreaded visual analogue scale or the numeric rating scale – “what is your pain on a 0 – 10 scale where 0 = no pain at all and 10 = most extreme pain you can imagine.” In people who either don’t speak our language, or who can’t respond with words, we rely on inferences drawn from their “body language” or nonverbal behaviour.

Many pain behaviours begin as useful evolutionary responses to threat: physiological arousal, reflex withdrawal, verbal groans and gasps. These serve to help us withdraw from the stimulus, help us escape the threat (or freeze or fight it), and signals that we need help (and avoid this threat) because we’re social animals. At the same time, behaviours are subject to behavioural reinforcement as well as cognitive biases, memories and so on. An example: If someone goes to the Emergency Department and reports their pain is 3/10, they’re unlikely to receive heavy-duty analgesia. You can bet that if they attend ED on another occasion, they’ll remember this and report their pain to be a little higher. Now often this isn’t a conscious decision, it’s something we learn over time and throughout our lives, so we may be oblivious to how we alter our verbal and nonverbal behaviour as a response to events in the environment and our own interpretations of what’s going on.

Pain is also rarely a static, consistent experience. Pain typically varies over the course of time. It can be episodic and pulsing and rhythmic, or it may come in waves, it might fluctuate unpredictably: in part this variability is a product of the stimulus, but also physiological processes such as habituation, attentional demands can mean we’re more or less “tuned in” to being aware of pain, and our emotional state is also part of the picture.

Finally (or not, depending on my whim!), our response to pain depends on our interpretation of its meaning and significance. When we’re tired and feeling down, and the pain seems mysterious and very threatening because we have things to do and no-one can tell us what the diagnosis is we’re more likely to increase our awareness and our behaviour associated with that experience. Maybe we’ll report it as 9/10 because it seems to intrude on life, the universe and our very existence as we know it. Maybe we’ll be really afraid and don’t think we can cope with it even though we usually do, so we’ll report it as 12/10. Maybe we’re not experiencing pain right now but we think that if we do something wrong we’ll get the pain back (think of angina here), so we just don’t do things “in case”. And maybe we’ve been told not to do things because it might be harmful, so we don’t do those things, our pain is around its usual level but we feel constrained and report it as 7/10 because we’re fed up with it all.

We know that part of the challenge of pain is that it’s incompletely understood (I use the word “it” as a placeholder for the rather more wordy “our experience of pain”). We do have pretty good means of reducing pain, but the problem is that these leave us incapable of doing very much because the most effective approach is simply to lose consciousness. But life doesn’t permit us to do that for long without adverse consequences! And for many people, even the best analgesia is only likely to reduce pain by about 30%, if at all.

When someone has learned to reinterpret their pain as not terribly threatening, still annoying and frustrating and demoralising, but not indicating that the body/self is about to come to serious harm, it’s possible to look well but feel awful inside. In other words, the pain intensity and quality doesn’t change an awful lot, but because it’s no longer associated with existential threat to self, it’s possible to put on makeup, groom well, interact happily, and look “normal”. How do I know this? Well – that’s what I do every day.

So using pain intensity as a guide to how well a person has recovered or adjusted to their pain is not an especially reliable guide as to how much pain is bothering them. The relationship between pain intensity and what we can and cannot do is uncertain and complex. And behaviour change is not easy. Doing things differently involves a whole cascade of changes that need to be implemented, not the least of which is learning how to regulate physiological arousal, reconceptualising the pain experience as something that can be lived with, redirecting attention towards things that matter to us, developing motor control and strength when this has changed – but possibly the most complex and ignored involves responding to, or altering our response to other people’s behaviours.

This means navigating other’s expectations from us (some people are afraid that when a person begins doing things again they’re going to make their pain worse and fail, others are expecting return to “normal” without factoring in that pain IS a significant challenge to deal with), and their behavioural responses to what we do. Many of the people I work with who live with pain talk about losing friendships, not being able to keep up with others, being misunderstood, being ignored or punished with angry reactions because they’re not the same person they were before their encounter with weird prolonged pain. And these are only the responses at an individual and small group level! What about the perverse disincentives to return to usual activities, like losing compensation prematurely, or having to return to a job that is not the job you left and you feel unprepared for or overskilled and unappreciated? Legislation that is written for “normal” recovery from illness or injury but doesn’t include persistent pain. Processes that mean you have to prove disability repeatedly just to retain access to services or income.

So, even if clinicians find that their treatment reduces pain, it may not lead to the outcomes clinicians want to see: a happy, active and engaged person. Sometimes it can lead to ongoing life restrictions (think angina again). Sometimes it can lead to erratic activity patterns. Sometimes those other factors influence how the person goes about life and not in a good way.

Echoing something written repeatedly over the decades in pain research literature, I want to quote from Ballantyne and Sullivan (2015). This article challenges clinicians to rethink pain reduction as the primary outcome measure for persistent pain in the face of increasing opioid use (now reducing but often without subtlety or support) because of the very issues I’ve outlined above. They state the following:

Suffering may be related as much to the meaning of pain as to its intensity. Persistent helplessness and hopelessness may be the root causes of suffering for patients with chronic pain yet be reflected in a report of high pain intensity.

And conclude their article with this:

When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Multiple measures of the complex causes and consequences of pain are needed to elucidate a person’s pain and inform multimodal treatment. But no quantitative summary of these measures will adequately capture the burden or the meaning of chronic pain for a particular patient. For this purpose, nothing is more revealing or therapeutic than a conversation between a patient and a clinician, which allows the patient to be heard and the clinician to appreciate the patient’s experiences and offer empathy, encouragement, mentorship, and hope.

Emphasis is entirely mine. And heartfelt.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of chronic pain—the wrong metric? New England Journal of Medicine, 373(22), 2098-2099.

Why do clinicians fear telling people their pain may persist?

There is a big void in our understanding of interactions between clinicians and people who live with persistent pain, and that vacuum is about how people learn that their pain is not going anywhere soon. Recently I searched for qualitative research examining the conversations between clinicians and patients at the moment of diagnosis: that moment when a clinician says “I’m sorry, but you’ve tried all there is to try, and it looks like your pain might not respond”. Or it might be “We’ve found out what your problem is, but we know that right now, there aren’t any very effective treatments”.

Oddly enough – or perhaps not – this is incredibly difficult to find. I wasn’t able to locate any specific studies (though if someone else has found some I’d be very happy to get a list!). The closest I found was a synthesis of qualitative studies by Toye, Seers and Barker (2017) looking at the experiences of healthcare professionals while treating people with persistent pain. In it, the authors identify six themes that seemed apparent after synthesising the included studies:

• Skepticism in medicine where a person is ill – but diagnosis is difficult. The authors point to the strong culture within medicine in which subjectivity is valued less (they say “shunned”) than objectivity. But of course, pain is always subjective.
• Clinicians have to “do the work” of reconciling the person they see in front of them and the absence of objective clinical findings – this is difficult when a biomedical model is preferred over a biopsychosocial model. (I could add here that unless that biopsychosocial model is truly integrated as a whole, it could turn into a dichotomous not “bio” then “psychosocial” but that’s another discussion)…
• Clinicians also have to work in a space where either their clinical knowledge is not relevant, or it’s actively unhelpful, meanwhile trying to help a person who wants and needs certainty and support.
• Clinicians also have a dual duty: responding to the person who is distressed while also remaining aware that some of what the person wants may not be helpful or good – with some of the concerns being also about the healthcare system, and using investigations that are unnecessary and wasteful.
• As a result of these multiple demands on clinical balance, clinicians may bear a personal cost in terms of emotional energy, empathy and perhaps as a result find it difficult to want to engage with people for whom they feel the “work” will be hard and unrewarding.
• Ultimately, clinicians working in this field develop a “craft of pain management” which they believe defies algorithms and categorisations, and instead is an ongoing interplay of call and response.

I can completely understand these challenges. If clinicians “measures of success” are resolution or a problem, or at least effective management of a problem, the difficulty in most instances of persistent neuropathic or nociplastic pain is the limited number of medications, and their relatively poor effectiveness. And other approaches (exercise, coping strategies etc) are equally limited. So – we might need to establish a different measure of success, and that’s hard.

In the absence of research discussing clinician’s ways of giving a diagnosis, I asked people with persistent pain on a social media group to give me their account of how they were given the news about persistent pain. The themes that emerged were:

• No-one told me my pain would persist.
• Despite surrounding myself with a broad multidisciplinary team, no-one broached the subject.
• Pointing to the presence of supposed pathology – “you’ll need surgery”
• “what we’re doing isn’t helping” – despite best efforts.
• Being put into a category of people who can’t be helped.
• No-one showed me how to live with this pain
• Being told casually as if it were no big deal – this shouldn’t have a big impact on you.
• I was told there’s no cure, no effective treatment and the idea is to make life tolerable but I will probably never be pain free.
• The diagnosis of a disease was given – but I wasn’t told it was the reason I hurt.
• You have chronic pain and there’s not likely to be a cure in your lifetime.

In my interactions with people online, both people with pain and those hoping to treat, I’ve heard a number of opinions: we should never “give up” on pain reduction; we don’t want to “kill hope”; there’s always something we can do …

Here are a few questions:

• When do we admit we don’t have a 100% success rate for treating persistent pain?
• Given that people with pain often put their lives on hold until there is a diagnosis and treatment plan (usually aimed at pain reduction and/or cure) – how long does someone need to put their life on hold until we acknowledge that the cost of waiting outweighs the uncertain benefits of pain reduction?
• Is this a decision we as clinicians should make? If it’s a collaborative decision, do we provide people living with pain an unbiased and neutral view of their options?
• Fundamentally, do we fear living with pain ourselves, and does this in part fuel our desire to keep treating?
• What do you think it’s like for a person living with pain to never be told that this is reality? Because people will blame themselves (for not trying hard enough), blame their health professionals (for not looking hard enough), blame the system (for not funding enough) – when actually there is no secret stash of treatments for people who are “good enough” to get them.
• If someone is told “chances are high this won’t resolve quickly, if at all” does this mean nothing will ever change? Or simply that we’re giving permission to ourselves and the person to find ways to have a meaningful life with pain? What if we conveyed the reality that currently there may not be a way to reduce pain, but this doesn’t mean it will be forever – and in the meantime we can work together to create a life that is fulfilling?

I guess the sad thing for me is that even though we’ve had persistent pain management programmes available in various forms since the 1970’s, with the flush particularly evident in the 1990’s and waning ever since, people are still not given the opportunity to have good support while learning how to live well with pain.

Because until we have at least a 90% success rate with our treatments for persistent pain, I think we need to be humble and admit these approaches are still needed.

Toye, F., Seers, K., & Barker, K. L. (2017). Meta-ethnography to understand healthcare professionals’ experience of treating adults with chronic non-malignant pain. BMJ Open, 7(12), e018411. doi:10.1136/bmjopen-2017-018411

On the problem of coping

Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

The confidence that you’ll succeed if you try…

Self efficacy. It’s a word bandied about a lot in pain management, and for a group of clinicians in NZ, it’s been a shock to find out that – oh no! They’re not supporting self efficacy with their patients very much! It means “confidence that if I do this under these conditions, I’ll be successful”.

Self efficacy is part of Bandura’s social learning theory (click here for the Wikipedia entry) where he proposed that much of psychological treatment is driven by a common underlying mechanism: to create and strengthen expectations of personal effectiveness. Bandura recognised that we don’t always have to personally experiment through trial and error in order to learn. Self efficacy expectations were thought to develop from personal experience (let me do, and I’ll learn how); watching other people try (show me, and I’ll see if you succeed, then I’ll copy you); verbal persuasion that aims to convince that you have the capabilities to manage successfully (encourage me, let me know I can, and I’ll try); and how physiologically aroused or alert you are (if I feel confident inside, I’ll try but if I feel anxious or stressed I’m less inclined to) (Bandura, 1977).

Bandura and colleagues established that “different treatment approaches alter expectations of personal efficacy, and the more dependable the source of efficacy information, the greater are the changes in self-efficacy.” (Bandura & Adams, 1977, p. 288). The conclusions drawn from this mean that treatments where people DO and succeed are more effective at enhancing their belief in self efficacy, while watching others, or being told how to do something are far weaker at building this effect.

Bandura began working on this theory while pondering how psychological treatments, particularly for systematic desensitisation or graded exposure, generated their effects. Systematic desensitisation aimed to reduce arousal levels and thus avoidance while being in a relaxed state – therefore the person is exposed to increasingly “aversive” stimuli (stimuli you want to avoid) while remaining calm and relaxed. Bandura thought that there were other factors involved in avoidance behaviour, developing his theory that expectations of negative consequences alone can generate fear and defensive behaviour and that this isn’t necessarily reflected in autonomic arousal and actions. Bandura hypothesised that reducing physiological arousal improved performance not by eliminating a drive to escape – but instead by increasing the confidence that the person can successfully manage the situation.

For parents, the idea that if you believe you can do what you set out to do, is embodied in the little book “The Little Engine That Could” (Piper, 1930/1989). Remember? The little engine that couldn’t because all the bigger engines said so, but then tried and tried and believed he could – and he did!

So, what does this have to do with pain management?

Let’s paint a scenario. Allan comes to see a hands-on therapist because he has a sore back. He believes that hands-on therapy is the thing, because others have said it’s really good. He goes, gets his treatment and wow! Things improve! The next time he has a sore back (because, you know, it almost always comes back) what does he do? Well, on the basis of his past experience, he heads to his hands-on therapist, because he’s confident this will help his pain. The problem is, his therapist has moved town. He’s a bit stuck now because in his town there are not many therapists doing this particular kind of treatment – what does he do? He doesn’t believe that anyone else can help, and he has no belief that he can manage by himself. He has little self efficacy for managing his own back pain.

Self efficacy is not about whether a person can do certain movements, it’s about believing that the person can organise skills to achieve goals within a changing context – not just what I will do, under duress, but what I can do, what I’m capable of doing, and what I say I’ll probably do.

Self efficacy is not a belief that a specific behaviour will lead to a certain outcome in a certain situation, it’s the belief that I can perform that behaviour to produce the outcome.

So, self efficacy isn’t a generalised attitude – it’s a specific belief about certain actions, certain outcomes in certain situations. It’s not a personality trait like hardiness, or resilience, or general confidence or self-esteem, it’s about being confident that I can generate a solution to a problem in a particular part of my life.

The times when we’re least confident are often when we’re facing a new experience, or we’ve had a bad experience previously. Particularly if we’ve seen other people fail at the same thing, or succeed but do so with much fear and loathing. In the case of pain, there are ample opportunities to have a bad experience in the past, and to learn from other people around us that – oooh back pain is something to be afraid of, and you can’t manage it alone – you need to get help from someone else. Consequently, many people have very low self efficacy for successfully dealing with a bout of low back pain.

And health professionals: we can foster this.

How? By implying that success is due to what we do, rather than being a natural process of recovery. By suggesting it’s something about our “magic hands” or pills, or injections or surgery or special exercises, or “using the core correctly”. In doing so, we’re generating a belief that the person cannot manage alone. That it’s not what the person does, but the magic hands, pills, injections, surgery, special exercises or using the core…

Damush, Kroenke, Bair, Wu, Tu, Krebs and Poleshuck (2016) found that self management approaches to pain increase self efficacy, self management actions, and reduced pain intensity and depression in a group of community patients with chronic musculoskeletal pain and depression. A typically tough group to work with because confidence to succeed at anything is pretty low in depression. Self management aims to ensure the credit for recovery lies with the person doing things that help – creating and supporting a belief that the person has the capability to successfully manage their situation. The techniques? Simple strengthening and stretching exercises, progressive muscle relaxation, and visualisation, in a group setting. Strategies that typically don’t need technology, but do provide support. Information about the natural history of recovery was included – so people were given realistic and optimistic information about their recovery, whether it meant pain reduction, or not. The usual goal setting, problem-solving, and positive self talk were encouraged, and people set goals each week to achieve – maybe based on something from the session, or something the person wanted to do for themselves.

This is not a high-tech approach. This is simple, straightforward pain management as it has been done for years (right back as far as the mid-1970’s and Sternberg!). And through it, these people become increasingly confident that they could successfully manage their own mood and pain independently. As a business model it’s probably not the best for repeat business – but oh how good for those participants who could go away and live their lives without having to think of themselves as patients.

More on self efficacy in the next couple of weeks – we can help people to become confident that they can succeed at managing their pain if it should happen again.

 

Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review,  84, 191-215.

Bandura, A., & Adams, N. E. (1977). Analysis of self-efficacy theory of behavioral change. Cognitive Therapy and Research, 1(4), 287-310.

Damush, T., Kroenke, K., Bair, M., Wu, J., Tu, W., Krebs, E., & Poleshuck, E. (2016). Pain self‐management training increases self‐efficacy, self‐management behaviours and pain and depression outcomes. European Journal of Pain, 20(7), 1070-1078.

Maddux, J. E. (2016). Self-efficacy Interpersonal and intrapersonal expectancies (pp. 55-60): Routledge.

Managing sleep problems – a medication-free approach (iv)

The fourth step in learning to sleep well within an ACT framework, is build. My previous posts were: Discover and Accept and Welcome.

In build, we’re beginning to build new practices. This is about learning how much sleep you need, and when you need to head to bed and wake up again.

I know when I had trouble sleeping at night (I refused to call it insomnia, but it most definitely was!), I thought I’d tried everything to help. I had used all the sleep hygiene strategies like no devices in bed, no TV in bed, do some relaxation as I lay down, have a regular bed-time and wake-up time – and one of the things I tried to do was eliminate coffee after lunchtime. While most of the time coffee isn’t a problem for me, I learned that when I was vulnerable to not sleeping, coffee and similar substances (including chocolate and alcohol) were not good for me. And today I still don’t drink coffee after lunch and limit myself to three or so cups a day.

So… what’s different about ACT and this stage of learning to sleep again?

Well, people with pain often talk about being interrupted by their pain – of waking up in the middle of the night because of pain and then not being able to get back to sleep. While there is some truth to the idea that we wake because of pain, in fact we all wake up over the course of a night. You’ll know the typical “sleep architecture” (click here for a nice explanation) where we fall into a deep stage of sleep fairly soon after heading to bed, and that we have periods of REM or rapid eye movement sleep (dreaming sleep) at regular intervals over the night. What you may not be as aware of is that in the periods just before and just after REM sleep, we’re actually awake. Not very awake – but awake enough to roll over and get comfy again. If your bladder does what mine does, I usually have a quick trip to the loo around 2.30ish, and go right back to sleep again.

When you have pain, chances are greater than you are more aware of those lighter periods of sleep and, like I do with my bladder, notice that you are awake. If you then start noticing your pain… or your worries… or your mind starts dropping comments to you, then it’s possible you’ll stay awake. Partly this is because the biological drive to fall into a deep sleep at the beginning of the night has been partly satisfied. Partly also because experiences like pain are very salient or important. So are noises (the cry of a baby, that tapping sound on the window, the car roaring down the road) and during the lighter periods of sleep we’re more likely to wake fully rather than just roll over. We’re not actually waking more often as much as waking more fully, and perhaps for longer than normal.

Building new patterns means some basic “rules” – but rules that are held lightly. In other words, it’s fine to change things up a little from time to time (after all, birthdays, travel, having a cold, or getting a puppy are all things that can disrupt sleep), but broadly these things seem to be habits of good sleepers:

1. Heading to bed around the same time-ish each night (or within 20 – 30 minutes of this time). Same applies to waking up – and to help you wake, an alarm clock (I do use my phone for this), and in winter, I use a bright SAD light, and bump up the temperature on my electric blanket. Light and warmth both tend to make you wake up a bit more quickly, so it’s helpful for me during winter when I have seasonal affective disorder (winter depression).
2. Knowing that it’s normal to take around 10 – 15 minutes to fall asleep, and being OK with this.
3. Changing how long you sleep for will take a few weeks – it’s a habit! So don’t go changing your bedtime or wakeup time too often. If you’re using sleep restriction (going to bed a little later than normal, perhaps getting up a little earlier) you can return to a more “normal” length as part of fine-tuning how long you need to sleep for your needs. But, don’t change things too often!
4. If you have a late night out (or if you’re travelling over a time zone or two), try to get up at your usual time. Yes, this means keeping the same wake time over the weekends as the week days!
5. Develop a kind of “wind down” habit – but again, hold this lightly because sometimes there are enjoyable events on late, or you have people visiting, that may mean you’re a little more alert than normal. But on the whole, basically spend around 30 – 45 minutes giving your mind signals that you’re heading to bed. This means cleaning your teeth, checking the doors, stopping watching TV or going on devices, maybe get into your jimjams (PJs!) and heading to bed with a book or magazine.
6. When you’re in bed, just quietly lying there, letting thoughts wander in and out without getting caught up in the content, and you’ll notice yourself quietly falling asleep. This is totally normal. If you do get caught up in your mind chatter, as soon as you notice you are gently bring your attention to your breathing and the sensations of lying in bed, and this should (at this point in your journey) help you fall asleep.

You can see it’s not too different from what I hope you’ve been practicing all along – just that instead of fighting with those thoughts, or getting all tangled up in them, you’ve got skills to let them go, and just be there in the darkness, resting.

There are a lot of specific issues you may also encounter – things like your partner who snores like a chainsaw, or twitches all night long (I’m the guilty party here!); or when you have a cold or a stuffy nose – the former might take a little longer to deal with, but the latter is usually just for a week or so and I tend to be happy using decongestants just for those few nights when I cannot breathe…. As for the partner noise or twitching, like dealing with your thoughts this is probably about you dealing with your thoughts about the noise or twitching! Again, try welcoming or being willing to listen to or feel those habits. Making some room for them rather than getting caught up in thoughts of smothering him or her! And go back to your usual mindfulness practice.

Finally – the last step is living! We tend to put life on hold when we try to control rotten sleep patterns.  Now it’s time to know that while sleeping badly can come again from time to time, you have skills to roll with it – you know you can manage if you avoid fighting with it or trying to control it. Take those steps to build your new sleep habit, and go out there and DO again!

 

Managing sleep problems – a medication-free approach (ii)

Last week I described the “conventional” CBT for insomnia approach (CBTi), but this week I want to introduce an Acceptance and Commitment Therapy (ACT) approach which is superficially similar to CBTi but holds to some of the fundamental principles of ACT: mindfulness, and letting go of control. As is typical for ACT, there are no hard and fast absolutes and instead there is a focus on workability – what works, in context.

Most of the content of today’s post is drawn from my personal experience and The Sleep Book by Dr Guy Meadows. There are five basic steps and according to the book it should take five weeks to get sleep sorted. I’m not as convinced about timeframes, so I’ll describe it as five steps.

1. Discover: this step is about discovering what triggers and maintains insomnia, and focuses on why struggling to start sleeping is counter-productive. That’s right – stop struggling!
2. Accept: well, with a name like ACT you’d expect some acceptance, right? This is not about resigning yourself to nights of poor sleep, but rather a willingness to let go of the struggle, to be fully present in the now – rather than reminiscing about the past, or predicting the future.
3. Welcome: everything that shows up in your mind and body (after all, they’re there whether you want them or not!).
4. Build: a new sleeping pattern by identifying how much sleep you need and when you need it.
5. Live: during the day and sleep during the night!

Like absolutely any behaviour change, this process is not always easy! It takes persistence, courage and doing things that may not feel like sensible things to do! Let’s begin.

Discover: we do a whole heap of things to try to get to sleep – normal sleepers don’t. Normal sleepers just put their heads on the pillow, maybe let their minds wander over the day, and then gently fall asleep. When people with insomnia try to sleep, we try all manner of things to get to that state – and many of those things either prolong the sleeplessness, or actually wind it up!

Meadows describes four factors associated with the start of insomnia:

• risks which may be getting older, being female, being a worrier or depressed, having a family history of rotten sleep, maybe being generally full-on;
• triggers may include life stress, some medical conditions like irritable bowel or a fracture and yes, pain, and medications or alcohol, time zone changes and so on;
• arrivals are memories, thoughts, sensations, emotions and urges that come to visit when we’re trying to get off to sleep but can’t – and these are partly the fight, flight or freeze response which happens when we begin worrying, or are part of the triggers (and we often think it’s those things that need to be got rid of); and finally
• amplifiers, or things that are meant to be helping reduce insomnia but can actually make it worse: things like spending longer in bed, sleeping in, going to be earlier, having naps – and oddly enough, some of the things we’re traditionally advised to do to help us sleep. Things like reading in low light, having a warm bath or warm milk drink, watching TV, listening to the radio, playing with devices like the phone…. Even some of the things we do because we’re not sleeping – like getting out of bed and doing things like checking emails, doing some exercise, going to the loo – all of these things are done to try avoid the chitter-chatter of our mind, or eat least to control or distract from it, yet can paradoxically train your brain to be awake right when you really want to sleep… even things like keeping the room dark, wearing earplugs, doing relaxation, sleeping in a different bed from your partner, trying a new mattress or pillow can be a step too far and train your brain to think controlling these thoughts about sleep is the Thing To Do.

I’ll bet that, like me, most people have done all these things – and some of them are part of CBTi. There is a place for them in moderation – but it’s even better to develop the skill of not being caught up in trying to control our thoughts, worries, feelings, body sensations when we’re heading to sleep.

Now I’m sure this is where people are going “yeah but…” and giving a whole list of why your situation is different. Would you be willing to keep reading and look at some alternatives?

The risk of trying to control these arrivals and amplifiers is that while they don’t work, it’s too scary NOT to do them. Your brain learns, as a result, that sleep is a problem. And what does the brain like best? Oh that’s right – solving problems. Except that if you’ve ever tried to “make yourself” stop thinking, or feeling – have you noticed that you just can’t? Try it now: try and make yourself feel happy. Yeah… you either have to recall something enjoyable from the past, or anticipate something in the future. And while you’re doing that, your brain is cranking up. It’s worse if you try to stop yourself from thinking or worrying because that old fight, flight or freeze response kicks in and up goes your heart rate and perspiration and breathing…

So the first step of this programme is to discover all the things you’re doing to control the uncontrollable. We can’t stop feelings, thoughts, memories and so on from arriving. They just do. So fighting with them and trying hard to get rid of them just does not work – they’re there AND you’re feeling stressed because you can’t get rid of them!

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Assessing problems with sleep and pain – ii

Last week I wrote about my approach to assessing sleep problems in those with persistent pain. As an ex-insomniac I’ve spent a while learning about sleep so I can understand what’s going on, and why sleep can be such a problem. In this week’s post I want to dig a little deeper into what’s going on with poor sleep, as well as some of the unique features of sleep in people experiencing persistent pain.

Having reviewed the five main areas that are fundamental (and can/should be assessed by anyone working with people who experience persistent pain), the next area I want to look at with people is mood. There are two primary psychopathological contributors to poor sleep: the first we’ve dealt with last week (Question 4 – what’s going through your mind…) which is by far and away the most common initiator and maintainer of insomnia, and it doesn’t even need to be a diagnosable anxiety disorder! The second, you’ll probably have guessed, is depression.

Depression is common in people with both rotten sleep and ongoing pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans et al, 2016), and there are some suggestions that pain and depression may be related and similar neurobiological processes may be involved for both (increased limbic activity being one of them). In depression, there is increased activity in the HPA Axis, reduced BDNF (brain-derived neurotrophic factor), and reduced 5HT with increased pro-inflammatory cytokines . In persistent pain, there may be activity in the HPA Axis, there is certainly reduced BDNF except in the spinal cord, and reduced 5HT, along with increased pro-inflammatory cytokines. And in sleep disturbances there is also increased activity in the HPA Axis, redced BDNF, reduced 5HT and guess what… increased pro-inflammatory cytokines. And all three interact with one another so that if you happen to be depressed, you’re more likely to experience pain that goes on, and your sleep will also reduce your mood and increase your pain. And the reverse. All very messy indeed!.

What this means is that assessing for low mood and the impact on sleep is important – if someone’s describing waking well before they usually do, in the wee small hours (anywhere from 3 – 5am if they usually wake at 7.00am) I’m ready to screen for low mood. To be honest I always assess for that anyway! Depression is also associated with low motivation and loss of “get up and go” so this is likely to interact with poor sleep, creating a very tired person.

There are three other very important aspects of sleep I like to assess for: sleep apnoea, where someone stops breathing for seconds to minutes at a time, often snorting awake, and this may be associated with snoring and daytime sleepiness. Often the person won’t be aware of their sleep apnoea, so it can be helpful for a bed-partner to let you know whether this is a feature of your patient’s sleep.

The next are a group of movement disorders of sleep, many of which are associated with the third area I assess, which are medications.

Movement disorders of sleep include restless leg syndrome – that feeling of absolutely having to move the legs, usually at night, and relieved by getting up to walk around, but in doing so, making it difficult to sleep. Another is periodic limb movement disorder of sleep, which can be every 5 – 30 seconds of leg twitching all night long, and in some cases, whole body twitching though this is less frequent and less rhythmic. This latter problem may not be noticed by the person – but their bed-mate will know about it! – and this problem may be associated with both sleep apnoea and restless leg, AND some doses of antidepressants. Another common contributor to these problems is low iron levels – worth checking both iron and medications!

Finally with medications, I like to understand not only what the person is taking, but also when they’re taking them. Several points are important here: some medications are usually sedating such as tricyclic antidepressants but in some people nortriptyline can paradoxically increase alertness! If that’s the case, timing the dose is really important and should be discussed with either the prescribing doctor, or a clinical pharmacist. Opioids depress respiration (ie slow breathing down) so can be problematic if the person has sleep apnoea AND is taking opioids, the drive to inhale may be less, causing more frequent and deeper periods without breathing normally. For restless legs and periodic limb movement disorder, some antidepressants (venlafaxine is one of them) in high doses can cause the twitching and once the dose is reduced, this fades away, at least a bit.  There is a very small amount of research suggesting that NSAIDs can influence sleep quality in some people also.

The effects of poor sleep are many: anything from micro-sleeps during the day (problematic while driving or operating machinery!), to more irritability, sluggish responses, less concentration and more difficulty solving problems. Pain is associated with more frequent micro-wakenings during the night (Bjurstrom & Irwin, 2016) but findings with respect to whether deep sleep, REM sleep or light sleep were consistently more affected weren’t clear.

Having completed my assessment, more or less, I can also use a few pen and paper measures: Wolff’s Morning Questions (Wolff, 1974), Kryger’s Subjective Measurements (1991), Pittsburgh Sleep Quality Index (Bysse, Reynolds, Monk et al, 1989) and the Sleep Disturbance Questionnaire (Domino, Blair,& Bridges, 1984) are all useful. Speaking to the partner is an excellent idea because I don’t know about you but I never snore but my partner swears I do! Who do you believe?!

People experiencing insomnia are not very reliable when describing their own sleep habits – we’re terrible at noticing when we’re actually asleep or awake in those early stages of sleep, so we typically think we’ve slept less than we actually have. We also do a whole lot of things to avoid not sleeping – and these can actually prolong and extend our sleeplessness!

We’ll discuss what to do about the factors you may have identified in your sleep assessment in next week’s instalment, but you can rest assured it’s not crucial for you to do anything yourself about some things. For example, if someone has sleep apnoea, referring for a sleep study is important, but not something YOU need to do! But please make sure a referral is suggested to someone who can make it happen. Similarly with medications and sleep movement disorders, it’s not something you should tackle on your own – please discuss managing these with a specialist sleep consultant, psychiatrist, or the person’s own GP. Mood problems – treat as you would any time you find someone with a mood problem.

Next week – off to the Land of Nod: A roadmap?!

 

Boakye, P. A., Olechowski, C., Rashiq, S., Verrier, M. J., Kerr, B., Witmans, M., . . . Dick, B. D. (2016). A critical review of neurobiological factors involved in the interactions between chronic pain, depression, and sleep disruption. The Clinical Journal of Pain, 32(4), 327-336.

Buysse DJ, Reynolds CF 3rd, Monk TH, et al. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res 1989; 28(2):193–213.

Domino G, Blair G, Bridges A. Subjective assessment of sleep by Sleep Questionnaire. Percept Mot Skills 1984;59(1):163–70.

Kryger MH, Steljes D, Pouliot Z, et al. Subjective versus objective evaluation of hypnotic efficacy: experience with zolpidem. Sleep 1991;14(5):399–407.

Moul DE, Hall M, Pilkonis PA, et al. Self-report measures of insomnia in adults: rationales, choices, and needs. Sleep Medicine Reviews, 2004;8(3):177–98.

Wolff BB. Evaluation of hypnotics in outpatients with insomnia using a questionnaire and a self-rating technique. Clin Pharmacol Ther 1974;15(2):130–40.

Thinking the worst – and willingness to do things despite pain

Catastrophising, perhaps more than any other psychological construct, has received pretty negative press from people living with pain. It’s a construct that represents a tendency to “think the worst” when experiencing pain, and I can understand why people who are in the middle of a strong pain bout might reject any idea that their minds might be playing tricks on them. It’s hard to stand back from the immediacy of “OMG that really HURTS” especially when, habitually, many people who have pain try so hard to pretend that “yes everything is really all right”. At the same time, the evidence base for the contribution that habitually “thinking the worst” has on actually increasing the report of pain intensity, increasing difficulty coping, making it harder to access effective ways around the pain, and on the impact pain has on doing important things in life is strong (Quartana, Campbell & Edwards, 2009).

What then, could counter this tendency to feel like a possum in the headlights in the face of strong pain? In the study I’m discussing today, willingness to experience pain without trying to avoid or control that experience, aka “acceptance”, is examined, along with catastrophising and measures of disability. Craner, Sperry, Koball, Morrison and Gilliam (2017) recruited 249 adults who were seeking treatment at an interdisciplinary pain rehabilitation programme (at tertiary level), and examined a range of important variables pre and post treatment.  Participants in the programme were on average 50 years old, mainly married, and white (not a term we’d ever use in New Zealand!). They’d had pain for an average of 10.5 years, and slightly less than half were using opioids at the time of entry to the programme.

Occupational therapists administered the Canadian Occupational Performance Measure, an occupational therapist-administered, semi-structured interview designed to assess a person’s performance and satisfaction with their daily activities (Law, Baptiste, McColl, Opzoomer, Polatajko & Pollock, 1990). The performance scale was used in this study, along with the Chronic Pain Acceptance Questionnaire (one of my favourites – McCracken, Vowles & Eccelston, 2004); the Pain Catastrophising Scale (Sullivan, Bishop & Pivik, 1995), The Patient Health Questionnaire-9 (Kroenke, Spitzer & Williams, 2001); and The Westhaven-Yale Multidimensional Pain Inventory (Kerns, Turk & Rudy, 1985).

Now here’s where the fun begins, because there is some serious statistical analysis going on! Hierarchical multiple regression analyses is not for the faint-hearted – read the info about this approach by clicking the link. Essentially, it is a way to show if variables of your interest explain a statistically significant amount of variance in your Dependent Variable (DV) after accounting for all other variables. Or, in this study, what is the relationship between pain catastrophising, acceptance and pain severity – while controlling for age, gender, opioids use, and pain duration. The final step was to enter a calculation of the interaction between catastrophising and acceptance, and to enter this into the equation as the final step. A significant interaction suggests one of these two moderates the other – and this is ultimately captured by testing the slopes of the graphs. Complex? Yes – but a good way to analyse these complex relationships.

Results

Unsurprisingly, pain catastrophising and acceptance do correlate – negatively. What this means is that the more a person thinks the worst about their pain, the less willing they are to do things that will increase their pain, or to do things while their pain is elevated. Makes sense, on the surface, but wait there’s more!

Pain catastrophizing was significantly (ps < .01) and positively correlated with greater perceived pain intensity, pain interference, distress due to pain, and depression – and negatively correlated with occupational therapist-rated functioning. Further analysis found that only pain catastrophising (not acceptance) was associated with pain severity, while both catastrophising and acceptance predicted negative effect (mood) using the WHYMPI, but when the analysis used the PHQ-9, both pain catastrophising and pain acceptance uniquely predicted depressive symptoms.  When pain interference was used as the dependent variable, pain acceptance uniquely predicted the amount of interference participants experienced, rather than catastrophising. The final analysis was using the performance subscale of the COPM, finding that pain acceptance was a predictor, while catastrophising was not.

What does all this actually mean?

Firstly, I found it interesting that values weren’t used as part of this investigation, because when people do daily activities, they do those they place value on, for some reason. For example, if we value other people’s opinions, we’re likely to dress up a bit, do the housework and maybe bake something if we have people come to visit. This study didn’t incorporate contexts of activity – the why question. I think that’s a limitation, however, examining values is not super easy, however it’s worth keeping this limitation in mind when thinking about the results.

The results suggest that when someone is willing to do something even if it increases pain, or while pain is elevated, this has an effect on their performance, disability, the interference they experience from pain, and their mood.

The results also suggest that catastrophising, while an important predictor of pain-related outcomes, is moderated by acceptance.

My question now is – what helps someone to be willing to do things even when their pain is high? if we analyse the CPAQ items, we find things like “I am getting on with the business of living no matter what my level of pain is.”;  “It’s not necessary for me to control my pain in order to handle my life well.”; and “My life is going well, even though I have chronic pain.”. These are important areas for clinicians to address during treatment. They’re about life – rather than pain. They’re about what makes life worth living. They’re about who are you, what does your life stand for, what makes you YOU, and what can you do despite pain. And these are important aspects of pain treatment: given none of us can claim a 100% success rate for pain reduction. Life is more than the absence of pain.

 

 

Craner, J. R., Sperry, J. A., Koball, A. M., Morrison, E. J., & Gilliam, W. P. (2017). Unique contributions of acceptance and catastrophizing on chronic pain adaptation. International Journal of Behavioral Medicine, 24(4), 542-551.

Kerns IVRD,TurkDC, Rudy TE. (1985) West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Pain. 23:345–56.

Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. Journal of General Internal Medicine. 16(9), 606-13.

Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. (1990). The Canadian Occupational Performance Measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy. 57(2), pp82–7.

McCracken LM, Vowles KE, Eccleston C. (2004). Acceptance of chronic pain: component analysis and a revised assessment method. Pain. 107(1–2), pp159–66.

Quartana PJ, Campbell CM, Edwards RR. (2009) Pain catastrophizing: a critical review. Expert Reviews in Neurotherapy, 9, pp 745–58.

SullivanMLJ, Bishop SR, Pivik J. (1995). The Pain Catastrophizing Scale: development and validation. Psychological Assessment. 7:524–32.

Using more than exercise for pain management

In the excitement and enthusiasm for exercise as a treatment for persistent pain, I wonder sometimes whether we’ve forgotten that “doing exercise” is a reasonably modern phenomenon. In fact, it’s something we’ve really only adopted since our lifestyle has moved from a fairly physically demanding one, to one more sedentary (Park, 1994). I also wonder if we’ve forgotten that exercise is intended to promote health – so we can do the things we really want or need to do. Remembering, of course, that some people find exercise actually exacerbates their pain (Lima, Abner & Sluka, 2017), and that many folks experience pain as an integral part of their exercise (think boxing, marathon running, even going to a gym – think of the pain of seeing That Much Lycra & Sweat).

While it’s become “exercise as medicine” in modern parlance (Pedersen & Saltin, 2015; Sallis, 2009; Sperling, Sadnesara, Kim & White, 2017), I wonder what would happen if we unpacked “exercise” and investigated what it is about exercise that makes it effective by comparison with, say, activities/occupations that incorporate whole body movement?

One of the factors that’s often omitted when investigating coping strategies or treatments, especially lifestyle/self management ones, is the context and meaning people give to the activity. Context is about the when, where and how, while meaning is the why. Whether the positives (meaning, and values people place on it) outweigh the negatives (let’s face it, the lycra and sweat and huffing and puffing does not inherently appeal) are factors that enhance (or not) adherence to exercise and activity. One positive is a sense of flow, or “an optimal subjective psychological state in which people are so involved in the activity that nothing else seems to matter; the experience itself is so enjoyable that people will do it even at great cost, for the sheer sake of doing it”(Csikzentmihalyi, 1990, p. 4). I can think of a few things I lose myself in – reading a good book; fishing; paddling across a lake; photography; silversmithing; gardening…

Robinson, Kennedy & Harmon (2012) examined the experiences of flow and the relationship between flow and pain intensity in a group of people living with persistent pain. Their aim was to establish whether flow was an “optimal” experience of people with chronic pain. Now the methodology they used was particularly interesting (because I am a nerd and because this is one technique for understanding daily lived experiences and the relationships between variables over time). They used electronic momentary assessment (also known as ecological momentary assessment) where participants were randomly signaled seven times a day for one week to respond to a question about flow. Computationally challenging (because 1447 measurement moments were taken – that’s a lot of data!), although not using linear hierarchical modeling (sigh), they analysed one-way between group analyses of variance (ANOVA) to explore differences in pain, concentration, self-esteem, motivation, positive affect and potency across four named states “flow, apathy, relaxation and anxiety”. We could argue about both the pre-determined states, and the analysis, but let’s begin by looking at their findings.

What did they find?

People in this study were 30 individuals with persistent pain attending a chronic pain clinic. Their ages ranged from 21 – 77 years, but mean age was 51, and there were 20 women and 10 men (remember that proportion). People had a range of pain problems, and their pain had been present for on average 68 months.

The contexts (environments) in which people were monitored were at home, or “elsewhere”, and, unsurprisingly, 71% were at home when they were asked to respond. Activities were divided into self-care, work and leisure (slightly less time in work than in leisure or self care respectively).  The purpose of the activities were necessity (35%), desire (40%), or “nothing else to do” (18%). And most people were doing these things with either alone or with family, with very small percentages with friends, colleagues or the general public.

Now we’d expect that people doing things they feel so wrapped up in that nothing else matters should experience lower pain – but no, although this was hypothesised, pain intensity scores during flow trended lower – but didn’t actually reach significance. When we add the findings that concentration, self-esteem, motivation, and potency mean scores were highest in the flow state and mean scores were lowest in the apathy and anxiety states, we can begin to wonder whether engaging in absorbing activities has a major effect on pain intensity – or whether the value placed on doing the activities is actually the most important feature for people with pain. Interestingly, people felt their flow experiences while outside the home: this happened rather less often than being in the home, where apathy was most present. So… doing something absorbing is more likely to occur away from home, while remaining at home is associated with more apathy and perhaps boredom. Finally, flow occurred in work settings more than elsewhere, suggesting yet again that work is a really important feature in the lives of all people, including people living with pain. Of course that depends on the kind of work people are doing…and the authors of this paper indicate that people with persistent pain in this study have few places in which they can do highly engaging activities, even including work.

What does this mean for exercise prescription?

Engaging people in something that holds little meaning, has little challenge and may not be in the slightest bit enjoyable is probably the best way to lose friends and have clients who are “noncompliant”. I think this study suggests that activities that provide challenge, stimulation, movement possibilities, the opportunity to demonstrate and develop skill – and that people find intrinsically lead to flow – might be another way to embrace the “movement is medicine” mantra. I wonder what would happen if we abolished “exercises” and thought about “movement opportunities”, and especially movement opportunities in which people living with pain might experience flow? I, for one, would love to see occupational therapists begin to examine flow experiences for people living with pain and embraced the creativity these experiences offer for the profession.

 

 

Csikszentmihalyi, M. (1990). Flow: The psychology of optimal experience. New York: Harper Collins.

Lima, L. V., Abner, T. S., & Sluka, K. A. (2017). Does exercise increase or decrease pain? Central mechanisms underlying these two phenomena. The Journal of physiology, 595(13), 4141-4150.

Park, R. (1994). A Decade of the Body: Researching and Writing About The History of Health, Fitness, Exercise and Sport, 1983-1993. Journal of Sport History, 21(1), 59-82. Retrieved from http://www.jstor.org/stable/43610596

Pedersen, B. K., & Saltin, B. (2015). Exercise as medicine–evidence for prescribing exercise as therapy in 26 different chronic diseases. Scandinavian journal of medicine & science in sports, 25(S3), 1-72.

Robinson, K., Kennedy, N., & Harmon, D. (2012). The flow experiences of people with chronic pain. OTJR: Occupation, Participation and Health, 32(3), 104-112.

Sallis, R. E. (2009). Exercise is medicine and physicians need to prescribe it!. British journal of sports medicine, 43(1), 3-4.

Sperling, L. S., Sandesara, P. B., Kim, J. H., & White, P. D. (2017). Exercise Is Medicine. JACC: Cardiovascular Imaging, 10(12).