Motivation

Big questions in pain rehabilitation


The last 30 years or more of pain research and management have been exciting for us pain nerds. We’ve learned so much about processes involved in nociception, about the psychology of our responses to nociceptive input, about treatments (that often don’t work terribly well), and we’ve discovered that we (mainly) don’t know what we don’t know. There are some big questions though, that have yet to be answered – and don’t yet share the limelight that neurobiological processes seem to hog. Here are a few of my big questions.

  1. How do we alter public health policy to move from an acute biomedical model to the broader and more adequate biopsychosocial understanding of illness, as opposed to disease? To expand on this – our current healthcare funding targets procedures, actions taken against “diseases” like an osteoarthritic knee that can be whipped out and replaced with a shiny new one. The person living with that knee doesn’t really feature because what matters is getting rid of a waiting list of people who want new knees. Government funding is allocated to ensure X number of knees are replaced with the unquestioned belief that this is the best way to deal with osteoarthritic knees. Rehabilitation, or the process of helping a person deal with the effect of a disease on their experience (ie illness), is, by comparison, poorly funded, and the outcomes rather more uncertain and complex. It’s hard to count outcomes that include quality of life and participation in the community. Health managers and policy funders find it slippery and complicated – and because a biomedical model is so much easier to understand, and so much simpler to measure, and those awkward “people” factors don’t need to be accommodated – funding seems to be allocated to procedures rather than outcomes. (see Wade & Halligan (2017) for a much more eloquent discussion of these issues).
  2. When, and how, do we tell someone their pain may be persistent? I’ve scoured the research databases several times over the years, to understand what research has been conducted in the crucial art of communicating to a patient that their pain is either not going to go away, or that it will take a long time before it does. While there is a little research into “giving bad news” this is primarily in the context of telling someone they have a “life-limiting disease”, ie they’re going to die. But nothing, not a single thing, on when we should advise someone, what we should say, what we should do to best help someone deal with the existential impact this kind of message has. In fact, when I’ve raised this question before, people on social media have advised me that if we tell someone their pain is persistent we’re reducing the possibility of recovery – developing an expectation in the person that their pain won’t go, and this will be a self-fulfilling prophecy. I’m not entirely sure that this is true: that suggests our minds can perpetuate pain, when my understanding is that our beliefs and expectations might influence behaviour rather more. And, putting myself in the shoes of many of the people I’ve seen who live with persistent pain, what is it like to be repeatedly told “we have the answer for you, if you’ll just do…[fill in the gaps]” only to find that it has not helped. How demoralising is that? How heartbreaking? And until we have a treatment with a 100% success rate, we will always have to acknowledge that some people will need to live with their pain for the rest of their years. It’s like a dirty little secret: don’t tell people or — and to be honest, I do not know what might happen! (I couldn’t locate a single paper on how to communicate a chronic pain diagnosis – if anyone has found something, please let me know!)
  3. How do we handle those clinicians who firmly believe that psychosocial factors are either irrelevant, or are equivalent to psychopathology? How do we help those people understand that describing someone’s cognitive approach to their situation as “catastrophising” does not negate or trivialise their distress? Neither does it mean we are “judging” the person. It simply recognises an association between one way of interpreting an experience – and outcomes that are not positive for the person. Clinicians who work with people who tend to “think the worst” do their best to understand how someone has developed this understanding of their situation, then offer new information, skills and support to help that person feel more confident and less hopeless. A clinician who simply offers sympathy may feel heroic and kind, but might be cementing disability and distress into place. And those who believe that the only factors that need addressing are depression or anxiety – and that’s not their scope of practice – probably could do with some more education about how humans interact, and the “social” aspects of the biopsychosocial approach.
  4. How do we appraise treatments that might help in the short term, but have unintended consequences? Particularly unintended consequences that occur over time and in areas unrelated to the original treatment. Here’s an example: when someone is offered an injection procedure that reduces pain, yes pain reduces. Yay! This might provide a “window” of opportunity for rehabilitation, return to work, and return to “normal”. And certainly this seems to occur. BUT what happens as the pain returns? If we offer a further procedure, what is the psychological effect of relief on future treatment seeking? Having worked in a pain management service where three-monthly injection procedures were offered, I can say that a core group of people will phone up as soon as their pain returns, and ask for another procedure. If it’s nearly 3 months since the last one, the person gets booked in. Another procedure, another few months go by. This time, it’s 2 months when the person begins to notice pain. Another phone call to ask for another procedure and the person gets booked in – 2 1/2 months since the previous one. Yay! Pain reduces, person goes on… this time six weeks after the procedure the person recognises that the pain is coming back…. phones up and asks for a procedure. This time the person is told “no, you need to wait”. They’re distressed. They’re anxiously waiting, waiting. They see their GP, maybe get some medications. They begin sleeping poorly. Eventually they get another procedure – and oh! the relief! But the experience of distress then relief from a procedure is an incredible learning opportunity. Guess how long before the person comes back for another procedure? And while they’re waiting for it, they’re distressed, not sleeping, disabled – and not ready to “do rehab” because they KNOW there’s a treatment that will “take it all away”. The problems are many, but two strike me: (1) repeated procedures mean those patients can’t be discharged, they remain patients as long as they continue to get the treatments and this eventually takes up so much time and space that fewer new patients can be accepted, and (2) treatments like cortisone injections can only be offered three or so times. What has the person been trained to do when they experience pain? That’s right – seek another procedure. And when this isn’t available, the person has learned to feel anxious about their pain, and to believe there’s little they can do about it themselves. I think this is cruel.
  5. Finally, how do we move from a clinical model where clinicians believe they have the answer, to a model where we appreciate that the person with pain is the one doing the work in all the hours they’re not with us? Maybe the way we do our treatments might shift from doing things to a person, or telling the person what to do (and expecting that they’ll do it just because we said) to being a coach, a facilitator, a cheerleader, a navigator – someone who is willing to work with rather than do to. And when will our funding models and service delivery models shift from valuing procedures (and therefore paying these people more) to valuing interactions (and therefore paying these people more) – and move away from trying to substitute person-to-person interaction with technology? Our communication capabilities need to be highly refined, highly skilled, incredibly nuanced and selective and flexible, and yet the skill to wield a technique (read – scalpel, manipulation, needle, bathboard – the “what” we do) is valued far more, and trained far more intensively than our communication skills. Unless, of course, we’re psychologists. But we use effective communication all the time – and we need to get better at it so we can more effectively help the person in front of us, who will ultimately have a choice about what they do. When will we be comfortable with recognising just how crucial the so-called “soft skills” of empathy, reflective listening, goal-setting, encouraging, challenging, responding to distress – when will these be funded adequately and when will we realise we ALL use these, not just psychologists.

Big questions, uncertain and complex answers. Can we have meaningful conversations about these without research? And yet these questions are hard to study. But isn’t it time to?

Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: a model whose time has come. Clinical Rehabilitation, 31(8), 995–1004. https://doi.org/10.1177/0269215517709890

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.

Exercise? Who me? Yoga or physiotherapy or education…


Exercise, while one of The Most Important self management approaches for persistent pain, is not an easy sell to someone who is experiencing pain. Especially not if that exercise looks like huffing and puffing, hauling on bits of metal in a gym, or wearing lycra. Not to mention the “sports drinks”…  Those things aside, exercising is a good thing. You heard it from me, and I have declared my body an exercise free zone! The thing is, what kind of exercise, for what purpose, and how to get introduced to it.

Personally I’m a fan of exercise that achieves something else other than “getting fit”. I like gardening, I love dancing, I enjoy cycling (especially to the store to get a GREAT coffee!). Walking the dog is fun. Swimming (especially snorkeling) is awesome! I like my exercise to do more than bring on the endorphins, especially as I don’t get much of that post-exertional analgesia that many people do – and believe me, they do (Ellinson, Stegner, Schwabacher, Koltyn & Cook, 2016). I like my exercise to look like the things I need or want to do, so that when I need to do ’em, I’m in fit state to get on and do ’em.

So what kind of exercise works best? One sage told me “the exercise the person does!” and there is some truth to that, so when I begin talking to someone about exercise, I’m looking for something they can do regularly, that fits into their lifestyle, that makes them feel good, and has some other benefit to them. That benefit might be the social thing – going to a box-fit class with a group of others all bent on getting their fix of play-fighting. It might be the solitary thing – long walks along the beach with the dog for company. It might be the music – in my case, it’s belly dance (and I dare anyone to do a 5 minute shimmy drill while keeping an isolated upper body, a loose shimmy and smile!).

I like the idea of having variety – who says we need to do the same kind of exercise every day? So it’s a wet day and I don’t fancy taking my bike out in the rain, I can turn to my dance practice, or do the dusting, or vacuum the floors. It’s a frosty day and I can go for a brisk walk and take photographs of gorgeous sparkly frosty droplets while Sheba-the-wonderdog huffs steam and sniffs at the local scents. If it’s a warm day, why not head to the pool for a lap or two? If it’s a busy day and I don’t have time, what about some “exercise snacks”? Five minutes of exercise every 25 minutes adds some pretty quickly, so it’s lunges and chair dips and wall presses and shimmy practice in between writing.

Over time we’re seeing more research looking particularly at yoga for persistent pain of all kinds. Yoga comes in many different forms, and in this case I’m guessing the more extreme forms of hot yoga and contortion is not being studied. Some of the studies are appearing in rather eminent journals, like this one from the Annals of Internal Medicine and authored by a very large team including Saper, Lemaster, Delitto and colleagues (2017).

This study is a “non-inferiority” study, looking to establish whether yoga or physiotherapy, or indeed education, can help people living with chronic low back pain. Now I’m not going to do a blow-by-blow analysis of the study, that’s for you to do. What I am going to do is look at what the yoga consisted of – and see why, perhaps, yoga is getting so much research interest. BTW, yoga was found to be non-inferior to physiotherapy, and both yoga and PT were more likely than education to have a clinically meaningful response, although neither yoga nor PT were superior to education.

This is the basic format of the yoga class: Each class began with relaxation and meditation exercises, yoga breathing, and yoga philosophy. It continued with yoga poses and
concluded with relaxation. Pose variations and aids (such as chair, strap, and blocks) accommodated various abilities. Thirty minutes of daily home practice, facilitated by a DVD, a manual, and take-home yoga supplies, was strongly encouraged.

Yoga appeals to many because it seems to begin where people are at – it’s not huffy-puffy, things don’t jiggle, and generally the classes begin and end with the ritual of breathing and meditation. I like the idea of yoga (and yes, I’ve done a class or two!), because it doesn’t involve a lot of gadgets, you can do it alone or in a group, and it feels good. What I don’t like about yoga is the need to get effective and consistent feedback about how well you’re performing the poses, especially in the beginning, which means it can be difficult to do on your own without a teacher.

For people who find exercising both difficult and painful, yoga is a good place to start. I think attending classes is crucial (or at least having an instructor and a mirror!). Learning to use the meditation and breathing is integral to the exercise – and it’s this that I think makes yoga an effective addition to the exercise toolkit. What I’m less sure of is whether it’s better than any other form of exercise – or, in my case, the many different types of movements that I use in my weekly routine. And there’s the rub. As an occupational therapist, exercise is something people choose to do as a form of occupation (valued and meaningful activity). I also enjoy a bunch of other movement-based occupations, and to me these are as valid as yoga or the PT exercises included in this study. What my approach lacks, however, is a researched basis for it.

But here’s the thing: to date the research supporting exercise for people with persistent pain shows modest effects. And those effects are completely lost if the person doesn’t do the exercise. So why not have a wide range of whole-body movement practices to draw on, allowing the person to pick and choose and get out and do something every day, even if it doesn’t fit with our modern notions of what exercise should be?

 

 

Ellingson, L. D., Stegner, A. J., Schwabacher, I. J., Koltyn, K. F., & Cook, D. B. (2016). Exercise Strengthens Central Nervous System Modulation of Pain in Fibromyalgia. Brain Sciences, 6(1), 8. http://doi.org/10.3390/brainsci6010008

Saper, R. B., Lemaster, C., Delitto, A., & et al. (2017). Yoga, physical therapy, or education for chronic low back pain: A randomized noninferiority trial. Annals of Internal Medicine. doi:10.7326/M16-2579

Deconditioning? Or just not doing things any more?


For years there has been a general wisdom that people with chronic pain who gradually stop doing things “must” be deconditioned. That is, they must lose fitness, cardiovascular and musculoskeletal, and this is often used to explain low activity levels, high disability and the prescription of graded exercise.

While this explanation makes sense (remember what happens to limbs when they’re in plaster for six weeks? all skinny and wasted?) – it doesn’t inevitably hold, in my experience. I vividly recall a person who routinely swam 20 lengths of an Olympic pool in very fast time every day, yet could not, in his estimation, return to any kind of work, and who did not sit – for an entire three week programme. It’s always seemed a bit odd to me that even though people report they can’t do many everyday activities, they can complete a rigorous gym programme.

So, skeptical me was very pleased to see another paper by the wonderful Nicole Andrews, occupational therapist and PhD, and her colleagues Jenny Strong and Pamela Meredith. This one is about approach to activity engagement, certain aspects of physical function and pain duration and was published in Clinical Journal of Pain in January this year (reference at the bottom of the page). It’s an important paper because it challenges some of the assumptions often made about activity levels and “fitness”, as well as the use of an operant conditioning model for pacing – pacing involving working to a set quota, rather than letting pain be the guide. The concept of pacing has been woven into most pain management programmes since the early days of Fordyce, but more recently has been criticised for lacking a clear definition, and for very little in the way of empirical support as a stand-alone treatment.

In this study, Andrews and colleagues examined the relationship between certain activities and a “habitual” approach to activity engagement, and pain duration. This is a different approach to studying activity and over- or under- activity in that it examines specific activities rather than using a global measure of disability – and this is important because the people we work with do specific activities (or occupations as I’d call them) and it will be more important to be able to predict the types of activities people do, or not do, rather than simply using a general guide.

Andrews and colleagues used a tool I particularly like called the Pain and Activity Relations Questionnaire (McCracken & Samuel, 2007) – this is a 21-item measure that looks at how people approach their activities. It has three subscales – avoidance, confronting, and pacing. Confronting measures “over”activity, while the other two are self explanatory.  They also used the Oswestry Disability Index, an old standard in measuring physical functioning.

The analysis was really interesting, and well-described for those who want to dig deeper into how this team found their results. I’ll cut to the chase and simply point out that they used the items rather than the overall score of the ODI, which allows for a more fine-grained analysis of the kinds of activities individuals engaged in, and how they approached those activities. This is the stuff occupational therapists and physiotherapists really want to get their teeth into!

So, what did they find?

Firstly, individuals who reported high levels of avoidance and low over-activity also reported significant restriction in personal care tasks, compared with those people who reported low levels of both avoidance and activity. There was no relationship between this item and pain duration, but there was a relationship between pain intensity and interference.

Lifting tolerance, however, was affected by pain duration and pain intensity rather than avoidance patterns. Walking tolerance wasn’t affected by approach to activity, or pain duration, but age and pain intensity were important factors. Sitting tolerance was not related to approach to activity, and only pain intensity was a contributor rather than pain duration. Finally, standing was also not associated with approach to activity and was only related to pain intensity.

Sleep was influenced by approach to activity engagement – and with pain duration. This means people with pain for one year and who were inclined to be “over” active and not avoidant, and those who were highly avoidant and highly “over”active were more likely to report problems with sleep than those with low avoidance and low “over” activity. (BTW I put the “over” in quotes because it could also be called “confronting” or “pushing” or “doing” – I think it’s weird term not yet well-defined). The group most likely to report poor sleep were those reporting high “over”activity and low avoidance who reported sleep problems 9.23 times more than those reporting low “over”activity and low avoidance. Once again, pain severity was the only other variable influencing reporting.

Sex life was not associated with approach to activity engagement, nor to pain duration. Social life, however, was associated with approach to activity engagement with those reporting high avoidance and “over”activity reporting more restrictions than those with low levels of both, along with similar results for those reporting high avoidance and low “over”activity – again, pain duration wasn’t associated, but pain intensity was.

Finally, travel was more likely to be reported a problem by all those compared with the low avoidance, low “over”activity group, with the high avoidance, low “over” activity group most likely to report problems.

What does all this mean?

Bearing in mind that the population from whom these participants were taken were attending a tertiary pain management centre programme, and that this is self-report, the findings from this study are really very exciting. As the authors point out, when the ODI is mapped on to the ICF (International Classification of Functioning, Disability and Health) the instrument covers sleep (body function), personal care, lifting, walking, sitting and standing (activity limitations), and social life and travel (participation restrictions). Activity limitations can also be divided into two domains – mobility and daily activities (basic and instrumental activities of daily life) – walking, standing and sitting are therefore “mobility”, while personal care and lifting are “daily activities”.

These findings show that mobility activities were not associated with an individual’s approach to activity engagement – they differ from the other items in that they’re performance skills, that is, they make up other activities can’t be reduced to a smaller component. The authors suggest that the responses to these items in this study may reflect the individual’s perceived capability to engage in daily activities, as opposed to their actual physical performance to engage in these tasks.

I think this means it’s important to ask about what people do in daily life, rather than rely simply on reported levels of walking or sitting. Tie self report into activities – for example, sitting tolerance might be best described in terms of whether a person can sit to watch a whole TV programme, or whether they need to get up during the ad breaks.  It’s important to note the relationship between approach to activity and poor sleep – sleep being one of those aspects of living with pain that people most want addressed. Perhaps by moderating the approach to activity we might be able to help people develop more effective sleep patterns. It also seems to me that we need to tie outcomes from pain management to real life activities in which an individual wants to participate – rather than a more “objective” measure such as the six minute walk test – which might satisfy our urge to measure things in a nice orderly way, but might not be relevant to an individual’s life.

Finally, this study shows that overactivity and avoidance patterns are not inevitably associated with reduced capacity over time. I think this is a “received wisdom” that needs to be unpackaged

 

 

Andrews, N. E., Strong, J., & Meredith, P. J. (2016). The relationship between approach to activity engagement, specific aspects of physical function, and pain duration in chronic pain. Clinical Journal of Pain, 32(1), 20-31

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity patterns in chronic pain. Pain. 2007;130:119–125.

Pain Acceptance rather than Catastrophising influences work goal pursuit & achievement


We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue. After all, life doesn’t stop just because pain is a daily companion. I’ve been interested in how people maintain living well despite their pain, because I think if we can work this out, some of the ongoing distress and despair experienced by people living with pain might be alleviated (while we wait for cures to appear).

The problem with studying daily life is that it’s complicated. What happened yesterday can influence what we do today. How well we sleep can make a difference to pain and fatigue. Over time, these changes influences can blur and for people living with pain it begins to be difficult to work out which came first: the pain, or the life disruption. Sophisticated mathematical procedures can now be used to model the effects of variations in individual’s experiences on factors that are important to an overall group. For example, if we track pain, fatigue and goals in a group of people, we can see that each person’s responses vary around their own personal “normal”. If we then add some additional factors, let’s say pain acceptance, or catastrophising, and look to see firstly how each individual’s “normal” varies with their own acceptance or catastrophising, then look at how overall grouped norms vary with these factors while controlling for the violation of usual assumptions in this kind of statistical analysis (like independence of each sample, for example), we can begin to examine the ways that pain, or goal pursuit vary depending on acceptance or catastrophising across time.

In the study I’m looking at today, this kind of multilevel modelling was used to examine the variability between pain intensity and positive and negative feelings and pain interference with goal pursuit and progress, as well as looking to see whether pain acceptance or catastrophising mediated the same outcomes.

variationsThe researchers found that pain intensity interfered with goal progress, but it didn’t do this directly. Instead, it did this via the individual’s perception of how much pain interfered with goal pursuit. In other words, when a person thinks that pain gets in the way of them doing things, this happens when they experience higher pain intensity that makes them feel that it’s hard to keep going with goals. Even if people feel OK in themselves, pain intensity makes it feel like it’s much harder to keep going.

But, what’s really interesting about this study is that pain acceptance exerts an independent influence on the strength of this relationship, far more than pain catastrophising (or thinking the worst). What this means is that even if pain intensity gets in the way of wanting to do things, people who accept their pain as part of themselves are more able to keep going.

The authors of this study point out that “not all individuals experience pain’s interference with goal pursuit to the same extent because interference is likely to depend on pain attitudes” (Mun, Karoly & Okun, 2015), and accepting pain seems to be one of the important factors that allow people to keep going. Catastrophising, as measured in this study, didn’t feature as a moderator, which is quite unusual, and the authors suggest that perhaps their using “trait” catastrophising instead of “state” catastrophising might have fuzzed this relationship, and that both forms of catastrophising should be measured in future.

An important point when interpreting this study: acceptance does not mean “OMG I’m just going to ignore my pain” or “OMG I’m just going to distract myself”. Instead, acceptance means reducing unhelpful brooding on pain, or trying to control pain (which just doesn’t really work, does it). Acceptance also means “I’m going to get on with what makes me feel like me” even if my pain goes up because I do. The authors suggest that acceptance might reduce pain’s disruptive influence on cognitive processes, meaning there’s more brain space to focus on moving towards important goals.

In addition to the cool finding that acceptance influences how much pain interferes with moving towards important goals, this study also found that being positive, or feeling good also reduced pain interference. Now this is really cool because I’ve been arguing that having fun is one of the first things that people living with chronic pain lose. And it’s rarely, if ever, included in pain management or rehabilitation approaches. Maybe it’s time to recognise that people doing important and fun things that they value might actually be a motivating approach that could instill confidence and “stickability” when developing rehabilitation programmes.

Mun CJ, Karoly P, & Okun MA (2015). Effects of daily pain intensity, positive affect, and individual differences in pain acceptance on work goal interference and progress. Pain, 156 (11), 2276-85 PMID: 26469319

Using the Theory of Living Well with Chronic Pain


Last week I had the privilege to talk to a national gathering of occupational therapists, physiotherapists, nurses and educators from Arthritis NZ. I presented my Theory of Living Well with Chronic Pain which is the theory of re-occupying self to achieve self-coherence after developing chronic pain.

To give you a bit of background, in this theory which was developed using classical grounded theory, I identified that the thing that goes as soon as pain doesn’t fit the usual acute pattern is the sense of self-coherence – life doesn’t make sense any more. As so many people have said to me about their early experiences with chronic pain, “I don’t feel like myself any more”. The things we take for granted like our habits, routines, the things we can expect from ourselves (like how long it takes to do something, how much we can get through in a day) get scrambled by this invasive experience that takes over. In an effort to make life more coherent, many people stop doing things they enjoy so they can focus on just. keeping. going.

I identified that there are three important processes that help people when they’re making sense of their pain: the first is diagnostic clarity, then symptom understanding, and finally occupational existing. When these three processes are complete and in the presence of both a trustworthy clinician and occupational drive, people begin deciding – deciding whether to seek more treatment so they can return to the old normal, or take the bull by the horns and get on with life as it is. After deciding, people begin occupational engaging, using coping and they can finally begin future planning again.

I have a suspicion that if we asked a person who was living with chronic pain where they would put themselves in this process, we’d get a fairly accurate idea of what their clinical needs might be. Perhaps we’d understand what their focus is, and we’d be able to provide them with input targeting what they identify as important rather than what we think they need.

For example, if we look at the illustration below (andwhere are you“click” for a pdf copy of it), when someone is unsure of their diagnosis we might need to check their understanding of what the diagnosis means. Does it fit with their experience? What’s the prognosis and does the person understand this? Has that label been interpreted accurately? Does the person know that it’s chronic/ongoing and that the pain is now not a signal to stop? If not, we need to think about how to explain this, to help the person make sense of it, and this might be a good time to consider providing the person with information on what pain is.

If the person can’t yet answer the questions related to understanding symptoms, then our job might be to help guide them through the process of experimenting with different activities, noting changes and variations in pain intensity and quality, and fatigue, that occur. I think this is best carried out while doing the basics (or occupational existing).

Doing the basics refers to occupational existing, or just doing what’s necessary. NOT setting new goals, just simply keeping life ticking over. If the person is having trouble with sleep, mood, anxiety, keeping a normal routine going, we’re not going to have much luck in helping them focus on bigger or more valued goals, or getting them to add more obligations to the mix. I’ve indicated sleep and routines as the two areas for the person to think about, but it could be that asking the person “what have you stopped doing” is enough of a prompt – I’m just concerned that, at this stage, the person isn’t yet ready to look ahead, they might just need some breathing space before moving on to deciding.

If the person is currently in the process of deciding, they’re weighing up the costs of looking for more treatment (to help them return to “normal”, or how they were before their pain began). The longer it’s taken to get to this point, the less chance they have of getting back to normal in its entirety. At this point, I think our job is to help the person make this process explicit. Using a decisional balance  chart (similar to the one I’ve linked to, but you can change it), and reflecting on what’s important in the person’s life, we can help people resolve their ambivalence and make their own minds up as to whether they’re ready to get on with life, or carry on looking for treatments. Remember, every treatment carries the risk of failure: so even if you’ve got the newest, most groovy treatment ever, respect that many people would rather not go ahead with an uncertain outcome if they can instead return to doing something that’s really important to them. It’s just that making this decision explicit is rarely carried out.

Once someone’s finished deciding, they can begin doing what’s important or occupational engaging. To enter this process, the person needs to consider what occupations (activities to those of you who don’t use occupational therapy/occupational science language) are most highly valued, make them feel like themselves. While some people are very clear about what it is they want to do most, others might find this a bit of a struggle – especially if it’s been a long time, or if the thing they love the most is something other professionals have told them is “unrealistic”. Here’s my take on this: I think if a person wants something of value, they will find a way to do it. Who am I to disagree? My job is to help them develop ways of achieving it, or at least of achieving the value that this occupation expresses. Each occupation we do is underpinned by values, reasons we believe it’s important. It may not be the occupation itself, but instead may be how we do it that expresses an important value. Our job at this point is to help the person identify the values expressed within this important occupation, and help the person problem solve ways to express those values.

Then most people will begin developing coping skillsso they can do what’s important. Again, our job is to support the person to develop a range of ways to achieve or engage in valued occupations. There’s no “right” way or “wrong” way, there are simply ways to do things that work in that particular context. What’s important is that the person knows plenty of options, and can choose when they fit the context. Where we might need to help is in providing options for coping, and in helping the person develop flexibility in how they apply these strategies. Flexibility might need to come from helping the person think differently about their pain, or about using some of the strategies.

And finally, once a person is beginning to do what’s important and use coping strategies, then it’s time for them to begin future planning. This process (and the other two of occupational engaging and coping) are going to be relevant for the rest of the person’s life. Future planning needs to include setback planning, maintaining behaviour changes, thinking about other ways to keep expressing who the person really is. I think it’s an aspect of pain management that we rarely consider – having chronic pain can mean learning to grow, to keep developing, to become more resilient and allows us to develop different parts of ourselves. It’s more than just “returning to normal” because, after all, what’s normal?

Who are you? The effect of pain on self


My client, let’s call him Al, is a plumber. Or was a plumber. He sees himself as a hard-working, reliable guy who takes pride in doing a job once, doing it well, and not stopping until the job is finished. He’s worked for most of his adult life in his own plumbing business, something he’s very proud of. He’s supported his partner while she’s been at home caring for their two now adolescent boys. In his spare time he goes fishing, loves the outdoors and likes to wander the hills whenever he can.

Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away. He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.

Al doesn’t sound all that different from many of the men I’ve seen in pain management. Some people call him “unmotivated” because he’s stopped thinking about goals for the future, and does his exercises in a half-hearted sort of way. He doesn’t always attend his appointments. It’s hard to know whether he’s actually doing his home exercise programme. A far cry from the “hard-working, reliable” man who runs his own business.

What’s going on? We could say he’s depressed, and maybe he is. But more importantly, why is he depressed? He doesn’t describe his pain as anything more than a 5/10 where 10 is the most extreme pain he can imagine. He’s still getting an income from his worker’s compensation, he’s still in a loving relationship and in their own home. But he’s not a happy man.

We’ve all met an Al, I’m sure. Superficially he looks fine, but a throwaway comment nails it: “I’m just not myself any more, I want things to be normal”.

Self-concept

All of us have an idea of who we are. A self-concept is a set of representations about who we are, what we do, how we do it, and why we do it. We all have several self-concepts – the “actual” self, the “ideal” self (who we would like to be), the “ought” self (the person others think we should be), the “feared” self (the person we really don’t want to be) and so on (Higgins, 1999; Markus & Nurius, 1986). Our sense of self is based on a collection of memories, a pattern of behaviours that we’ve developed and continue to develop as we aim to be the person we want to be.  Our sense of self guides our choices and the way we do things.

What happens when we can’t do things the way we think we “should”, or the way our sense of self would guide us to? Let’s think about this for a minute.

Al is used to getting up early in the morning, usually about 6.00, so he can get out to the site he’s working on that day and begin work by about 7.30. He prides himself on being at work, ready to go, before his apprentice gets there. He’s always organised, got his gear ready and in the truck with a cup of tea all sorted so he can plan his day.

Since he developed his back pain, Al’s had trouble getting out of bed before 8.00. He’s always tired. He’s not sleeping. He’s the last one in the house to get up, and he can’t even get to the work site until 9.00 because his body is sore and he can’t seem to wake up. He’s getting picked up by his apprentice who keeps giving him grief over not having his gear ready in time. He’s not the man he used to be, in fact, he’s become the man he swore he’d never be, a compensation bludger. He doesn’t like who he’s become. He feels lazy and useless.

Achieving self-coherence by re-occupying self

One of the neglected aspects of pain management is how to help someone deal with the changes to his or her sense of self. Life becomes chaotic when assumptions we make about the world no longer apply. The main concern of someone who is learning to deal with chronic pain is how to make life and self make sense again, to regain some coherence.  When they successfully solve this problem, it’s like all the various aspects of “self” have been reassembled. This is usually a new “self”, one that incorporates pain and the things that need to be done to accommodate pain while still expressing important aspects of “who” he or she is.

The process of learning to live comfortably with a new self is, I believe, a process of re-occupying self. Making a new self that feels recognisably “me”, doing the things that make “me” feel like myself, including some of “my” usual standards and attitudes and interests.

Yet what do we so often do when we doing pain management? We tell people like Al to “relax” and “pace” (Al learned as a child that you don’t stop until the job is done). We tell him he needs to move in certain ways (as a plumber? under buildings, in roof cavities, hauling gear out of the truck, carrying it over building sites). We suggest he needs to not do some things (work for the whole day without a break), but ask him to do other things (carry out a set of exercises three times a day). We say he needs to be back at work, but he doesn’t feel he’s pulling his weight.

What can we do?

I think we need to take some time to understand Al and what’s important to him. Not just the occupations (activities) but also the way he does them, and why he does them. How do they contribute to his sense of self? And then we need to work with him to give himself “permission” to do things differently – for a while. It’s like putting on a temporary “self”, a “rehabilitation” self. We can revisit this “rehabilitation” self as time goes on, and help him identify important values and occupations so he can begin to feel more like himself. Perhaps help him develop a new self that lets go of the old “normal” but includes some of the most important values expressed differently. I call this flexibly persisting – as Antony Robbins says, “staying committed to your decisions, but staying flexible in your approach”.

BTW – if you’d like to help me share this concept, you can! The idea of re-occupying self emerged from my PhD studies, and I want to present this at the Pain Science in Motion Colloquium in Brussels at the end of March. If you’d like to help me raise the airfare to get there (and back!), go to Give a Little and my page “Live well with pain”. Every little bit counts! I’ve had some wonderful people help me get almost half the money I need – will you help me get the rest? Thank you!!

 

Beekman, Claire E., Axtell, Lois, Noland, Kathy S., & West, Jaime Y. (1985). Self-concept: An outcome of a program for spinal pain. Pain, 22(1), 59-66. doi: http://dx.doi.org/10.1016/0304-3959%2885%2990148-4

Charmaz, K. (2002). The self as habit: The reconstruction of self in chronic illness. Occupational Therapy Journal of Research, 22(Suppl1), 31S-41S. doi: dx.doi.org/10.1177/15394492020220S105

Hellstrom, Christina. (2001). Temporal dimensions of the self-concept: Entrapped and possible selves in chronic pain. Psychology & Health, 16(1), 111-124. doi: http://dx.doi.org/10.1080/08870440108405493

Higgins, E. Tory. (1999). Self-discrepency: A theory relating self and affect The self in social psychology (pp. 150-181). New York, NY: Psychology Press; US.

Markus, Hazel, & Nurius, Paula. (1986). Possible Selves. American Psychologist, 41(9), 954-969. doi: dx.doi.org/10.1037//0003-066X.41.9.954

Being: or doing?


I’ve posted a couple of times on goal-setting here and here and here.

You might get the message that I spend my time bimbling along without focusing on anything in particular. That’s just so not true! I definitely have things I want to achieve – and I achieve them (mostly – I never did learn German except to decipher my Burda pattern instructions!). It’s just that I think health professionals can use goals to clobber people with, and I don’t think that helps anyone, least of all the person in the middle.

Here are some more good reasons not to focus on goals:

  1. Goals can make all our efforts focused on the goal, and when the goal’s complete the actions stop. Goals can make daily actions things we do as a means to an end rather than something we do because we think they have value. Goals can make those actions temporary, a chore.
  2. Goals are external outcomes we want to achieve. That means achieving them is often out of our control. If I want to get a new job there are things I can do but in the end an employer must want to hire me. There’s nothing I can do to get a particular job if the employer just doesn’t want to employ me.
  3. When a goal takes a long time to reach, we can lose interest and give up. Then all that work is lost.

So, if I don’t just bimble along, randomly doing whatever takes my fancy, and I don’t set goals, what do I do?

I read a fabulous post by Nadira Jamal, The Belly Dance Geek

In it she’s looking at building a daily dance practice. Dancers need to practice, but many amateur dancers do a boom and bust approach to dance practice. “There’s a performance coming up – must practice! must practice!” Then once that performance is over, dance practice stops. Only to begin again once there’s another performance! No wonder some of us never get beyond struggling with hip drops. Nadira’s reasoning is that when we focus on “achieving the goal”, practice is a means to an end, not a means in itself.  Now the reason I want to dance is that it’s part of who I am, an expression of myself. So, you might wonder, why on earth don’t I practice as often as I can?  Well, it seems too hard to fit it in, I get bored, there are other people around, it’s too hot, it’s too cold, I’m still in my pj’s, I’ve had my shower already and don’t want to get all sticky…

People we work with have similarly good reasons for not doing those exercises we’ve recommended.

Instead, Nadira recommends using themes in dance practice. Picking some areas of dance to work on and working on them – selecting from a theme gives more variety for practice, they become a focus but not a prescription, and we choose them. A theme might be arms – and thinking of all the different ways I could improve my arms in dance. Pick a couple of activities, use these as a “menu”, then when you begin to practice, choose the one or ones that appeal that day.

Translating this into pain management, a theme might be “ways to down-regulate my sensitive nervous system”. The are a heap of ways to do this: mindfulness, yoga, walking in the garden, reading a good book, stretching, self-hypnosis. What a range of things I can choose from each day! I can write them all down, then depending on how I’m feeling that day I can choose the one that suits me the most.

I think it’s good to begin the day by reviewing my diary – and that when I plan my actions. I’ve decided, after listening to Nadira, to practice every morning. It’s easy because I just have to get out of bed five minutes earlier than normal. And yes, I’m only doing 5 minutes at the moment. For those who don’t know, I am NOT a morning person. And 5 minutes means I KNOW I can do it, even when I’m feeling sluggish. And it’s tied to getting up – usually I read, so I just finish reading 5 minutes early. I know the things that are likely to derail me from doing the practice, so I have my music ready, stay in my pj’s to do it (a vision that is not a sight for sore eyes), and go straight to the shower after. I’ve chosen themes for practice, and I focus on those.

With a client, I might look at “exercise” and consider all the activities that could be included in “exercise”. Not just the gym, but also gardening, vacuum-cleaning, dancing, walking along the beach, taking Sheba-the-wonderdog for a walk, throwing a stick for her. So flexible I can pick something to do each day.

The key, I think, is looking at why we think someone “should” do whatever it is we want them to do. Why should someone do exercises? Is it to be able to do something else? Yes? Then choose a number of activities that will contribute to doing that thing. Let the person decide exactly what to do each day.

Here’s an example: if we want someone to get fitter because this will help them return to work, list all the ways we (and the person) can think to get a bit of exercise into their day.

  1. Park the car a bit further away from home today, and walk to the park.
  2. Use the stairs instead of the lift.
  3. Take a bike ride around the blog.
  4. Take the dog for a walk.
  5. Walk along the beach with your partner.
  6. Build 5 minute exercise “snacks” throughout the day (I use Pomodoro technique to do this)

While these aren’t earth-shattering in intensity, for someone who is just not that into exercising, this might be a good beginning. And it allows for variety, builds on existing habits (daisy-chaining) Beginning where we are, allowing for variety and interest, and focusing on actions rather than goals gives us pleasure in the doing.

If we can’t say why we think they need to, for example, increase single leg standing balance, then seriously folks, why are we getting them to do it? If we don’t know why someone should sweat it out on a bike at a gym, then why do we think it’s a good thing? Is a spin class just for the thrill of the spin? If so, does the person enjoy it? Yes? Then fine, go for it. No? If it’s to be fit enough for something else – what other ways could that person “get fit enough”?

There is always more than one way to skin a cat, as they say. Don’t get trapped into getting your patients hooked into doing The One Exercise just because you think it’s a good thing. I’m pretty confident that this is the best way to lose people. Let’s instead focus on being, and the doing will happen in a myriad different ways.

One gap to fill in pain management


There have been some great gains in pain neuroscience over the past few years – we know more about mirror neurones, cortical smudging, “placebo” and how cognitive behavioural therapy changes the brain. It’s sexy. There are also some rather unsexy areas of pain management, and one of these is about how people learn about their chronic pain.

It takes most people several years to get a definitive diagnosis for even well-known inflammatory problems like ankylosing spondylitis (Salvadorini, Bandinelli, Delle Sedie, Riente et al, 2012) – nine years is a long time to have mysterious pain that no-one seems to have a handle on. We also know that people with pain want some very specific things from their consultations: a definite diagnosis, acknowledgment of pain, acknowledgement of expert knowledge from the person with pain, to be seen as an individual rather than a diagnosis (Haugli, Strand & Finset, 2004).

My research looked at the ways to cope used by people who live well despite their pain. The first part of living well involves making sense of what is going on.

When a person first experiences pain, mostly it’s thought of as a typical acute pain problem. When the pain doesn’t settle down, or if it feels different from other experiences of pain, people will begin searching for information. Eventually, and this can take a long time (years), there’s a match between “what I feel”, “what I’ve learned” and “a label”. The label represents a lot to people living with pain. It means validation (I’m not going crazy, I’m not imagining it, I’m not being weak), it means the problem is understandable, and it means someone knows what is going on.

At the same time as getting external validation for the problem, people are trying to work out what their pain does on a day-to-day basis. Where do I hurt? What does it feel like? What’s normal? Over the past few years as apps for our devices have been developed, these are useful tools people can use to track their pain from day-to-day.  I’ve seen incredibly detailed diaries where people have written down their pain intensity, and what they’ve done for months and months in an attempt to get symptom understanding.

And then there’s the need to predict the effect of chronic pain on what needs to be done in life. And this is a gap I think we need to fill.

When people are busy learning about their pain, and at least until they have diagnostic clarity, life seems to get put on hold. It’s a recognised feature of this phase of having pain, life can become “a viscous long-lasting now”, with temporal disorganisation (Hellstrom & Carlsson, 1996; Hellstrom, 2001).  In other words, people’s sense of the future and moving towards this gets disorganised because the world that used to be predictable has become chaotic.  They’ve lost the ability to dream about what might be there for the future, because now dominates everything.

This occurs because humans make plans based on a sense of self, of who we are, what we do, our contributions and roles. When chronic pain is present, people’s sense of self (the collection of knowledge about what-it-feels-like-to-be-me) is disturbed because all the everyday things they need to do are more difficult. Pain intrudes.

I’ve looked for any systematic tools to give people so they can learn how to predict the effect of their pain on daily activities (occupations, to use the language of occupational science and occupational therapy).  I haven’t found anything yet.

The whole idea that someone might want to, or need to, develop this kind of “somatic awareness” is counterintuitive. I mean, most programmes ask people to complete questionnaires that are used by clinicians to identify their problems and what therapy should target. Much of therapy is intended to extend what people can do, to help them go beyond their existing beliefs and limitations. We do this by engaging people in physical activities such as a circuit gym or a set of exercises that gradually gets increased over time.

BUT How does knowledge drawn from a set of exercises, or a circuit gym, transfer to the daily life patterns of a 34 year old builder? Or a 28 year old bank clerk? Or a teacher? Or a retired merchant navalman?

“Somatic awareness” as a clinical need in people with chronic pain is not a new idea. Strong and Large (1995), and Large and Strong (1997) identified that people who were not seeking treatment for their low back pain used “somatic awareness” to titrate their activity levels, and this formed a large part of their coping approach. Crowe, Whitehead, Gagan, Baxter, Pankhurst and Valledor (2010) also found that people “listen to their body” so they can adjust what they expect from themselves. Fisher, Emerson, Firpo, Ptak, Wonn and Bartolacci (2007) identified that by understanding the variability of pain, people could modify their occupational engagement, as did Persson, Andersson & Eklund (2011).   There are many more.

I think an obstacle to developing this aspect of self-management might be our fear that by asking people to notice what is going on in their bodies, we are reinforcing “pain behaviour”. I’m not sure that this is in fact what happens, but it’s an area for future research. The behavioural paradigm still has a strong influence on how we think about attention and pain. And we’ve all probably seen those people who fixate on pain fluctuations to the point of obsession, and usually because they’re keen to do whatever it takes to reduce the pain.

Somatic awareness, making sense, symptom understanding and occupational existing are tools used by people who are naive to pain management. Maybe in our efforts to help those who have a great deal of trouble with their pain, we’ve forgotten to build on the strengths used by those who cope well.

 

Allegretti, Andrew, Borkan, Jeffrey, Reis, Shmuel, & Griffiths, Frances. (2010). Paired interviews of shared experiences around chronic low back pain: Classic mismatch between patients and their doctors. Family Practice, 27(6), 676-683. doi: http://dx.doi.org/10.1093/fampra/cmq063

Crowe, M., Whitehead, L., Gagan, M. J., Baxter, G. D., Pankhurst, A., & Valledor, V. (2010). Listening to the body and talking to myself – the impact of chronic lower back pain: a qualitative study. International Journal of Nursing Studies, 47(5), 586-592. doi: 10.1016/j.ijnurstu.2009.09.012

Fisher, G. S., Emerson, L., Firpo, C., Ptak, J., Wonn, J., & Bartolacci, G. (2007). Chronic pain and occupation: an exploration of the lived experience. American Journal of Occupational Therapy, 61(3), 290-302.

Haugli, Liv, Strand, Elin, & Finset, Arnstein. (2004). How do patients with rheumatic disease experience their relationship with their doctors? A qualitative study of experiences of stress and support in the doctor-patient relationship. Patient Education and Counseling, 52(2), 169-174. doi: http://dx.doi.org/10.1016/S0738-3991%2803%2900023-5

Hellstrom, Christina. (2001). Affecting the future: Chronic pain and perceived agency in a clinical setting. Time & Society, 10(1), 77-92. doi: http://dx.doi.org/10.1177/0961463X01010001005

Hellstrom, Christina, & Carlsson, Sven G. (1996). The long-lasting now: Disorganization in subjective time in long-standing pain. Scandinavian Journal of Psychology, 37(4), 416-423. doi: 10.1111/j.1467-9450.1996.tb00673.x

Large, Robert, & Strong, Jenny. (1997). The personal constructs of coping with chronic low back pain: is coping a necessary evil? Pain, 73(2), 245-252. doi: http://dx.doi.org/10.1016/S0304-3959(97)00100-0

Persson, Dennis, Andersson, Ingemar, & Eklund, Mona. (2011). Defying aches and revaluating daily doing: occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi: http://dx.doi.org/10.3109/11038128.2010.509810

Salvadorini, G., Bandinelli, F., Delle Sedie, A., Riente, L., Candelieri, A., Generini, S., . . . Matucci-Cerinic, M. (2012). Ankylosing spondylitis: how diagnostic and therapeutic delay have changed over the last six decades. Clinical & Experimental Rheumatology, 30(4), 561-565.

Strong, J., & Large, R. (1995). Coping with Chronic Low Back Pain: An Idiographic Exploration Through Focus Groups. The International Journal of Psychiatry in Medicine, 25(4), 371-387. doi: 10.2190/H4P9-U5NB-2KJU-4TBN