Catastrophising – and controversy

There are few constructs more widely known in pain psychology than catastrophising. Defined as “an exaggerated negative mental set brought to bear during actual or anticipated pain experience” (Sullivan et al., 2001), catastrophising is associated with poor outcomes including greater pain intensity, distress and disability in almost every situation where pain is experienced (Sullivan & Tripp, 2024). Cognitive biases associated with catastrophising include interpretive bias, attentional bias and attentional fixation – in other words negatively interpreting situations, attending to the negative in a situation, and being unable to stop attending to what is troubling.

The term originally came from mental illness and the work of Ellis and Beck, where catastrophising was used to describe a focus on the worst possible outcome in a situation, or tending to overestimate the probability of a negative event. In pain research it was adopted by Sullivan and colleagues and thought to be ‘an exaggerated threat appraisal.’ In other words, making a mountain out of a molehill.

There are some troubling aspects to this term, and in the way it has been used with people living with pain. While it is strongly associated with negative outcomes, it’s important to dig a little more deeply into what is being measured and how. It’s also important to know how people living with pain experience this term, and to understand the way it has been used and abused to describe people with pain. My post this week and next will cover some of this!

About four years ago, much of the world experienced a collective moment of what we could now consider to be catastrophising. Remember then? It was at the start of the Covid-19 pandemic when nobody knew how the disease was transmitted, thousands of people were dying, and the global response was shutdown. Remember the toilet paper shortage? We might laugh now, but at the time we were really afraid. Anticipating the worst and planning for it, is a common human response to the unknown, even if some of us do this more than others.

For people with pain, particularly weird pain like complex regional pain syndrome or a bout of particularly nasty low back pain that doesn’t respond to the usual strategies, it doesn’t seem too far-fetched to worry like fury and to not be placated by reassurance. Especially if that reassurance is along the lines of ‘trust me, there’s nothing to worry about.’ Even more especially if that person has seen what has happened to others with similar problems. And then does an internet search and finds social media posts on the evils of lifting with a rounded back! We have to ask if pain-related distress is a realistic concern based on past experiences, patronising clinical responses (or worse, fear-evoking ones), and a sense of personal inadequacy to deal with weird pain. After all, if clinicians don’t know what to do, how would I, as an individual, know what it all means?

Turning to measurement now, and the main pen and paper measures used for this construct. A paper by Crombez and colleagues (2020) investigated item content validity, important psychometric property of measures for catastrophising. Most of us would know about construct validity (does it measure what we think it measures?), predictive validity (does it predict something important in the real world?), divergent and convergent validity (does this measure align with other similar measures, and differ appropriately with other measures that it shouldn’t relate to?)… Item content validity looks at the individual items within a measure, and asks participants to identify which construct that item looks like it taps into. Crombez and colleagues undertook this with several measures of pain catastrophising, using discriminant content validity method. They identified six constructs associated with the term pain catastrophising (including pain catastrophising); they then sought definitions for these using Oxford Dictionary definitions to avoid any theoretical bias. All measures that had been used to assess pain catastrophising were identified and the items extracted. In addition to the pain catastrophising items, they selected items that could be appropriate for the other five constructs, and included these in the list. Participants were then asked two questions for each item: 1) Did the item assess [insert construct]? yes or no; and 2) how confident participants were about their judgement (on a 0 – 10 scale anchored by 0% confidence and 100% confidence). The definition of pain catastrophising used in this study was ‘‘to view or present pain or pain-related problems as considerably worse than they actually are.’’

Cutting to the chase (but please do read the paper! It’s very thorough), using Bayesian hierarchical models, they analysed the items and responses. What they found is pretty challenging to read. Of the six instruments all considered to measure catastrophising, the CSQ (Coping strategies questionnaire, Rosenstiel & Keefe, 1983) and the AEQ (Avoidance Endurance Questionnaire, Hasenbring, Hallner & Rusu, 2009) was thought the most credible for measuring pain catastrophising, while the PCL (Pain cognition list, Vlaeyen et al., 1990) was not thought to measure the construct. Interestingly, the PCS (Pain catastrophising scale, Sullivan, Bishop & Pivik, 1995) was at the lower end of the rating, so participants didn’t think it measured what they thought of as catastrophising.

The next part of the study was intriguing: using the statistical analysis, the authors developed models comparing the score for ‘pain catastrophising’ to those for the five other constructs. This tells us how well each item was judged to fit the constructs under investigation. If the items from a measure fit the common understanding of ‘pain catastrophising’ we’d expect more people to agree with this, and with confidence. Hopefully the most commonly-used measure would be most closely associated with the construct as understood by these participants. But… you guessed it, none of the six instruments distinctively assessed pain catastrophising – most had content that participants judged to better fit the constructs ‘worrying about pain’ or ‘pain-related distress.’ Oooops.

What does this mean? Well firstly it’s going to rock a few boats because the PCS and pain catastrophising has been so extensively associated with poor outcomes. In fact, the authors stated in a recent paper (Crombez, Scott & De Paepe, 2024) “The message was clear, but not well received. The manuscript was rejected by many journals in the field. Admittedly, no study is perfect, but many comments of the reviewers were in line with the idea that “pain catastrophizing” has become “entrenched,” and resistant to change.” Note to researchers everywhere: if what you find doesn’t fit with the received view, it’s not going to get into print.

Then we need to do some serious thinking: if the measures used to assess pain catastrophising don’t measure what we think they do, what do we do with the accumulated findings based on their use? No, don’t toss that research on the scrapheap, the findings are what they are, and validly and reliably show that when people endorse the items in the PCS, the outcomes they report are not as positive as those who report lower levels of endorsement. What we need to question is what it is we are measuring. If not ‘catastrophising’ – then what? And why does it matter?

I do like the suggestion by Crombez and colleagues (Crombez et al., 2020; Crombez et al., 2024) that the term be removed and replaced by ‘pain related worry.’ Sullivan & Tripp think this trivialises the impact of catastrophising. Worry is somewhat ‘less’ – and they argue that if pain-related worry was the construct being measured, then surely studies examining worry and pain catastrophising would be similar (Sullivan & Tripp, 2024). However, pain-related worry is a little different from general worry, and I wonder if the items used to investigate pain-related worry represent what people who are worrying about pain actually think and do. The second point Sullivan and Tripp make is that by changing the term, the research that’s accumulated becomes somewhat suspect. I don’t agree: it stands as it is. We refine and reformulate concepts and models as we accumulate new information, and at least part of this process involves redefining what we call things.

The most compelling argument for changing the constructs name is that we simply do not have a gold standard way to measure ‘how bad’ the threat of pain is in people. There is no ‘predictor’ for the impact of pain on a person. Pain is subjective and my life experience and future hopes and dreams are similarly subjective. How can someone judge whether my worry about the impact of something on my life is ‘exaggerated’? Given the very real effects of pain on individuals’ lives including work life, relationships, sleep, mood, doing important things, AND paired with the often unhelpful information given to people by health professionals for many people the worry is absolutely on point. Unhelpful, but that’s a totally different topic.

Next week: the perspectives of people with pain….

Crombez, G., De Paepe, A. L., Veirman, E., Eccleston, C., Verleysen, G., & Van Ryckeghem, D. M. L. (2020). Let’s talk about pain catastrophizing measures: an item content analysis. PeerJ, 8, e8643. https://doi.org/10.7717/peerj.8643

Crombez, G., Scott, W., & De Paepe, A. L. (2024). Knowing What We Are Talking About: The Case of Pain Catastrophizing. Journal of Pain, 25(3), 591-594. https://doi.org/10.1016/j.jpain.2023.12.014

Rosenstiel AK, Keefe FJ. 1983. The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain 17(1):33–44 DOI 10.1016/0304-3959(83)90125-2.

Sullivan, M. J., Thorn, B., Haythornthwaite, J. A., Keefe, F., Martin, M., Bradley, L. A., & Lefebvre, J. C. (2001). Theoretical perspectives on the relation between catastrophizing and pain. Clinical Journal of Pain, 17(1), 52-64.

Sullivan, M. J. L., & Tripp, D. A. (2024). Pain Catastrophizing: Controversies, Misconceptions and Future Directions. Journal of Pain, 25(3), 575-587. https://doi.org/10.1016/j.jpain.2023.07.004

Vlaeyen JWS, Geurts SM, Kole-Snijders AMJ, Schuerman JA, Groenman NH, Van Eek H. (1990). What do chronic pain patients think of their pain? Towards a pain cognition questionnaire. British Journal of Clinical Psychology 29(4):383–394 DOI 10.1111/j.2044-8260.1990.tb00901.x.

Supported self-management – what are we managing, actually?

One of the words that has been in my vocabulary for decades is ‘management.’ No, I don’t mean the proliferative middle management layer infesting healthcare for about as long as I’ve been working in health. I mean ‘pain management’ or ‘supported self-management.’ As ever, what pops up for me is about what, exactly, is being managed?

Is it pain? Well – not exactly. After all, pain does what it does, and if we focus on pain reduction alone just look where that gets us (Ballantyne & Sullivan, 2015; Cutler & Glaeser, 2021). And quickly, lest anyone think I’m anti-medication and don’t know about the underhand dealings of the Sackler family – in the right place, at the right time, and with the right checks and balances, medication for pain can be a really good thing. It’s just that focusing on pain reduction without concurrently looking at living, well that IS a problem. The thing is that the relationship between pain intensity and functional limitations and even quality of life is complex, while the only time we’ll never feel pain is… when we’re six feet under.

If it’s not pain, then what is this thing called pain management? Mostly it’s a collection of actions that individuals need to do to engage in what matters to them, to reduce the impact pain has on daily life, and to feel a little like themselves.

There are problems with the language around pain self-management. While the current NZ government’s ideology of ‘individual responsibility’ is having its moment in the sun, self-management can come with the same flavour. Problem is, self-management is often not about managing ‘the self.’ It’s often about managing other peoples’ expectations while requiring accommodations from those around us so we can do the things that self-management consists of.

Let me unpack this a little.

Say I go to a clinic to help me with my painful neck. I’ll probably see a therapist for pain self-management. In those sessions I’ll be given ‘pain education’ and lots of exercise. I might be given some mindfulness or relaxation to help with my sleep and to down-regulate my nervous system. I’ll be told about pacing, and of course I’ll have set goals.

What’s wrong with this? Nothing… exactly. But here’s the thing: I live a full life. I have obligations to others – my aging parents, my adult children, my partner, my dog. I work. How do these people respond to my new regime of exercise, activity pacing, sleep management, and mindfulness?

Do I fit those new activities in around my current responsibilities? Or do I drop some? If I drop some of the things I do, who does them? Or do they just not get done? How do I negotiate these altered responsibilities? Or do those around me simply suck it up because, you know, I’m learning self-management?

What of those people who live complex lives? A woman who works two minimum wage jobs, fosters their teenaged grandchild because her Mum is having another baby and her Dad isn’t on the scene, who has other health conditions, who cares for their wider family including the brother with intellectual disability and his wife. How does this woman negotiate with the boss who says he can employ another person without those limitations when she asks if it’s OK to pace her work (she’s on a production line)? How does she manage her wayward grandchild who is truant from school because she has undiagnosed ADHD but nobody has assessed her because she’s a girl? How does she manage the 30 minute commute on a bus, then a bicycle ride for another 30 minutes to work and the same on her return? Then goes to her second job. And then get told she needs to do an exercise programme?

You see, self-management is not just about me doing my thing for myself. It’s about me working within my life context to find ways to do what matters. My life context. The people around me and their expectations and obligations. Some things that can be adjusted, and others that can’t.

I see self-management as a necessary and important component of living well with pain. But I also see it as more than that. It’s not pain that gets managed – because that means pain gets to call the shots and if I want my life, I don’t want pain to be in charge. It’s partly about me making adjustments in what I expect and can do for myself, and that’s a life-long process we all need to do as we age and develop limitations in what used to come easily. But it’s also about my whanau, my employer, my friends, and all of those around me including the social structures in place at my work, in my community and imposed on me by government and their agencies.

Where, in our pain self-management therapies, do people get supported to introduce all these changes to the people they live with, interact with? Knowing those with the least power and influence are also the population most at risk of developing chronic pain, how well are we supporting people to communicate to those around them? What are we doing to ensure employers (and social support services) are willing to accommodate people who need to adjust life to meet their needs?

You see, I think ‘pain management’ is really ‘life management’ – and it’s always social. Our job as health professionals is not only with the one person in front of us. It’s always about how we help that person live in their own world, with our support. And we probably need to pay much more attention to the world a person comes from and consider the challenges it always is to make change (at least, before we suggest the person ‘isn’t taking the message on board’). Helping with communication, assertiveness, and – where needed – challenging hierarchy, power and legislation is also within our scope of practice.

Ballantyne, J. C., & Sullivan, M. D. (2015). Intensity of Chronic Pain — The Wrong Metric? New England Journal of Medicine, 373(22), 2098-2099. https://doi.org/10.1056/NEJMp1507136

Cutler, D. M., & Glaeser, E. L. (2021). When innovation goes wrong: Technological regress and the opioid epidemic. Journal of Economic Perspectives, 35(4), 171-196.

Complexity and chronic pain*

*Persistent didn’t alliterate so well!

I’ve been pondering what makes persistent pain so complicated? What is it about this problem that means clinicians use terms like ‘heart-sink’, or ‘problematic’, or ‘difficult’ when they talk about people living with pain?

While nociception and all the associated neurobiological processes associated with pain are undoubtedly complex (and poorly understood), I don’t think this is what people mean when they describe chronic pain is complex. After all, there are loads of body systems and disease processes that are complex.

I come back to ourselves. Yep. You and I and the way we were taught to think about health. Or should I say, disease. Because let’s face it, mostly we were taught about disease processes in our professional training, right? Health was something definitely discussed but then we studied all the things that can go wrong rather than all the things known to promote health.

Here are some of the things we as clinicians could think about when we consider complexity and chronic pain.

  • We can’t directly treat pain. Yes: you read it here. We don’t directly treat pain, because pain is an experience. While some of us might directly interact with the nociceptive system, most of us don’t. Instead, we interact with people. As clinicians, we think that people should do what we think will help them, and in doing so, pain ‘ought’ to reduce. When pain doesn’t reduce, we often think it’s because the person ‘didn’t take the message on board.’ This helps us as clinicians feel a little less guilty that our treatment didn’t help.
  • Pain is often not the problem that needs to be addressed. Oh my. What we work with mostly are the responses people have when they’re experiencing pain. For example, immediately after joint replacement surgery, physiotherapists help people get up and out of bed, and even on the day of surgery, begin to walk! Outcomes from ‘Enhanced recovery’ are good: reduced length of stay in hospital, reduced pain, cost savings, faster return to function (Changjun et al., 2023). What are therapists addressing here? Often it’s fear of what pain means, or fear of what might happen if the person starts doing things (like fear of dislocating, doing harm to the prosthesis). If we’re not directly treating pain, but the expectation we and other stakeholders have is that we are… then we’re in a pickle when pain doesn’t resolve. This is a mind-shift for us if we’ve bought into the idea that our treatment ‘should’ reduce pain. And remember that many pains don’t respond very much to treatment of any kind (think neuropathic pains, fibromyalgia, chronic pelvic pains etc), so as clinicians we struggle with this. See my first point.
  • People dealing with chronic or persisting pain feel all the feels. They have to deal with the rotten sleep, the worry about what the pain means, the anger because pain should go away, the sense of injustice – and the stigma – of living with an invisible and misjudged problem. If someone is distressed because they’ve had a stroke we can understand that. A stroke often leads to visible disabilities. But pain that doesn’t go away – that’s not so easy to understand. Worse, people living with chronic pain don’t express their distress in their faces in the same way as those with acute pain (Blais et al., 2019), so we can think there’s something weird going on, and judge accordingly.
  • Take a look at the multiple discourses about pain everywhere – social media, scientific research, general media, within and between professional groups. They conflict. There are the biomechanists who think pain arises primarily from biomechanical demands and ‘overload.’ The inflammists who would argue all weird pains are about as-yet not fully understood inflammatory processes all around the body (but especially in the nervous system). The brainiacs who think all pain is about the brain. The peripheralists who think all pain is about what’s going on in the peripheral tissues and nerves. The traumatists who think weird pains are about life trauma, and the psychosomaticists who think it’s about transferred psychological distress. And I’m not even going near the malingerists, the ‘secondary gainists’, or the geneticists or… you know what I’m talking about. Because there is no single, simple fix, we see a multitude of possible contenders. No wonder clinicians can feel puzzled and perplexed. All the things they’re supposed to know and factor in to their clinical reasoning …And they’re supposed to be able to talk to others in the pain field and use the same language but nobody agrees on much! Except it’s complex.
  • Add in a dash of medico-legal tension. Because most (if not all) medico-legal stuff around pain doesn’t recognise the multifactorial nature of pain and instead perpetuates the idea that pain simply must arise from a single physical process that can be identified and should therefore be treated to fix the problem. Aided and abetted by those with clinical solutions that fit neatly into this discourse (but who don’t show great outcomes either… and have deep pockets to maintain their dominance in this particular landscape) (Harris et al., 2020; Karjalainen et al., 2023).
  • And the one that really does our collective heads in: none of our treatments are very good for chronic, persistent pain. There are small effect sizes for everything we can offer, from exercise to drugs to psychological treatments to surgery to combinations of all of these. Each New Thing arrives with a hiss and a roar with great impact – and then we watch the treatment effect sizes fade…
  • And what all of these lead up to is the hard work that comes with trying to help people who are dealing with not only pain and the known effects of pain on mood and daily doing, but all of these other factors that lie mainly with US as clinicians.

I don’t have ‘Ten easy steps to make pain therapy easy.’ I don’t believe they exist. I do think clinicians could make life easier if we recognised that the ‘complexity’ we think we’re dealing with, along with all the pejorative names we hurl at people living with pain, reflects our feelings of helplessness and frustration because we don’t know what to do.

Not knowing what to do isn’t a bad thing. It’s a good place to start. Then maybe we can listen to what people with pain want to say instead of assuming what we’ll hear. Maybe we can partner with people and acknowledge – even validate – the frustration that comes from having no easy answers. The skills we need might be less about anatomy, biomechanics, psychology, and much more about hearing from, collaborating with, experimenting, being creative and being humble and flexible about what we can offer. When we say chronic pain is ‘complex’ we’re not exactly wrong, but we are wrong about where we’re placing the blame for that complexity. And we should change the language we use when we’re talking about people living with pain: they are people, as are we.

  • Blais, C., Fiset, D., Furumoto-Deshaies, H., Kunz, M., Seuss, D., & Cormier, S. (2019). Facial Features Underlying the Decoding of Pain Expressions. J Pain, 20(6), 728-738. https://doi.org/10.1016/j.jpain.2019.01.002
  • Changjun, C., Jingkun, L., Yun, Y., Yingguang, W., Yanjun, R., Debo, Z., Kaining, Z., & Pengde, K. (2023). Enhanced Recovery after Total Joint Arthroplasty (TJA): A Contemporary Systematic Review of Clinical Outcomes and Usage of Key Elements. Orthop Surg, 15(5), 1228-1240. https://doi.org/10.1111/os.13710
  • Harris, I. A., Sidhu, V., Mittal, R., & Adie, S. (2020). Surgery for chronic musculoskeletal pain: the question of evidence. Pain, 161 Suppl 1, S95-S103. https://doi.org/10.1097/j.pain.0000000000001881
  • Karjalainen, V. L., Harris, I. A., Räisänen, M., & Karjalainen, T. (2023). Minimal invasions: is wrist arthroscopy supported by evidence? A systematic review and meta-analysis. Acta Orthopaedica, 94, 200.

“Exercise” – what does it do for people living with persistent pain?

No, I’m not going to assemble a bunch of papers and point out the effect sizes of exercise on pain and disability! In fact, I’m not even going to point to much research in this post. I want to pose some questions and put some thoughts out for discussion.

See, the people I’ve seen over the years who live with pain have, by and large, not been great ‘exercisers’ before their pain came on, and many haven’t really changed their lifestyle a heap since their pain either. In fact, there is research showing that people with chronic pain don’t change the overall quantity of their activity very much – but instead, change the pattern of that activity over the course of a day (Huijnen et al., . 2011; Tynan et al., 2023). Nevertheless, because of the influence of the ‘deactivation’ idea, along with the pain-related fear and avoidance model, and of course the benefits of exercise on other aspects of health, there would be very few people living with chronic pain who haven’t been prescribed some sort of exercise intervention.

I’ve made my views on exercise known many times – but once again, for the avoidance of doubt, I think movement is awesome, healthy, integral to living well and something to be done regularly and with enthusiasm. I’m less comfortable, however, with people being obligated to ‘do exercise’ with unhelpful explanations, the inflated promise of effects, and in forms that simply do not fit in with the complex lives we all live – now and over our lifespans.

Some of the unhelpful narratives include: that exercise will ‘take away the pain’; that exercise will improve functioning elsewhere in life; that symmetry is crucial; that core strengthening is needed; that ‘form’ must be ‘perfect’ (whatever that is); that progression should follow some formula (and not based on the person’s response to it); that one type of exercise is ‘the right one’; and that exercise must be supervised by a clinician or it doesn’t work. Bah humbug.

So. We do need to move and do that regularly. That’s a given. There are loads of ways to move and people who regularly meet the WHO exercise recommendations do this in a myriad of ways that look a lot like dance, walking, cycling, gardening, playing with the dogs and kids, leaping into the sea or a pool, doing housework, doing hobbies… all the things. Movement and life go together.

What does exercise offer people with pain?

Well, to me exercise is a simplified context for learning what feels OK and what doesn’t. Exercise (or movement practices) don’t have all the contextual factors that make life difficult. For example, when I’m gardening I need to factor in the ambient temperature, the time of year, the lifecycle of my plants, their needs for compost and water and pest removal. I also need to find a suitable time to garden, assemble all my equipment, be aware of all the other things I need to get done in my ‘spare’ time, and what needs doing in my garden. If I’m working alongside other people, I need to bear in mind the bits they want to do, the bits that need doing, and the bits I like to do. We need to coordinate our efforts so we don’t all go to do the same thing. Gardening is always influenced by context.

If, as I suspect, movement practices offer a simplified context to do movement with a person who helps me feel safe (I won’t damage myself when a therapist is present), who can encourage me to nudge in to movements I’m not confident about, who can offer suggestions about how I might change the way I go about doing a movement, or the quantity – then the ‘work’ is much less about the form of movement I do but much more about the ‘work’ the clinician does. And clinicians, it probably isn’t to do with the form or quality of my movements, but so much more about how YOU go about guiding ME to experience what my body is feeling like while it’s doing the things.

If my hunch is on the money, then the skills so often relegated to ‘oh you’d better do some communication stuff’ or ‘those soft skills’ might actually be the most critical ones a clinician can develop. Because, so it’s been found, words are sticky and have power (O’Keeffe et al., 2022) – and the more people listen to the words spoken in a clinical context, the less able they are to notice their own body responses (we can’t do divided attention very well). And those words spoken can act as life-long rules for behaviour (Barnes-Holmes & Harte, 2022). We know this simply by listening to the narratives of people describing no longer doing things they love on the basis of an authoritative word from a surgeon about the state of an osteoarthritic joint, or back pain and the risk of ‘damage’…(eg Stenberg et al., 2014; Christe et al., 2021).

What skills might be needed to facilitate awareness and build confidence?

Guided discovery is an approach used in psychotherapy – this involves the clinician obtaining data (information) from the person using open-ended questions, then guiding the person to pull that information together in surprising ways, testing assumptions and helping them to notice what they already know to be true. In therapies such as graded exposure for phobias, guided discovery helps people notice and be OK to nudge into discomfort, waiting for the symptoms of anxiety to reduce, and then noticing that this has happened even in the presence of the thing the person fears. From ACT, noticing without judgement is an integral process for people to tune in to sensory experiences so they can be in the present moment and become aware of the in-real-time impact of their actions.

I suspect the same skills might be critical for effectively guiding learning in movement therapies. That is, helping the person nudge into previously worrying movements, guiding them to notice what happens, remaining engaged in the movement enough times that the alertness level drops, and then drawing the person’s attention to how that feels. The therapists work is all about guiding the person to notice their own sensory experience, and of course, in structuring the movements so that the intensity and complexity suit where the person is at.

What this kind of approach won’t do on its own, is help that person transfer their learning undertaken in the safe clinic area with a safe clinician, into the complexity of daily life – and this is where occupational therapists should be adding their input. Because learning doesn’t transfer readily from one context to another without this process being structured, and without lots of repetition and exposure to lots of different contexts.

Helping people gain confidence in what their body feels like when it’s moving is a ‘transferable skill’. Learning to trust your own body experience allows you to experiment with different forms of movement practice. Different movement practices allow us to keep moving throughout our entire lives, in different ways to suit time, equipment, location, goals, money and motivation/interest.

You see, I don’t think movement or exercise is much about fitness or other physiological factors, except that when someone has a pain problem, it’s likely to mean a much bigger reaction from the nervous system (ie pain payback or pain flares) than in everyday folks. To counter this, we need to build confidence, awareness, willingness to go gently into these uncomfortable experiences, and then to sustain practice in all the life contexts so we can be able to do the things exercise and movement are supposed to promote: healthy living. If exercise doesn’t contribute to healthy living (note the emphasis on living), then all the health in the world isn’t worth it. If I’m healthy but don’t do the living I want to do, why that sounds a lot like being in prison.

Barnes-Holmes, D., & Harte, C. (2022). Relational frame theory 20 years on: The Odysseus voyage and beyond. Journal of the Experimental Analysis of Behavior, 117(2), 240-266. https://doi.org/10.1002/jeab.733

Christe, G., Pizzolato, V., Meyer, M., Nzamba, J., & Pichonnaz, C. (2021). Unhelpful beliefs and attitudes about low back pain in the general population: A cross-sectional survey. Musculoskelet Science and Practice, 52, 102342. https://doi.org/10.1016/j.msksp.2021.102342

Huijnen IP, Verbunt JA, Peters ML, et al. Differences in activity-related behaviour among patients with chronic low back pain. European Journal of Pain 15(7):748-755, 2011.

O’Keeffe, M., Ferreira, G. E., Harris, I. A., Darlow, B., Buchbinder, R., Traeger, A. C., Zadro, J. R., Herbert, R. D., Thomas, R., Belton, J., & Maher, C. G. (2022). Effect of diagnostic labelling on management intentions for non-specific low back pain: A randomized scenario-based experiment. Eur J Pain. https://doi.org/10.1002/ejp.1981

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2014). ‘I am afraid to make the damage worse’ – fear of engaging in physical activity among patients with neck or back pain – a gender perspective. Scandinavian Journal of Caring Sciences, 28(1), 146-154. https://doi.org/10.1111/scs.12043

Tynan, M., Virzi, N., Wooldridge, J. S., Morse, J. L., & Herbert, M. S. (2023). Examining the Association Between Objective Physical Activity and Momentary Pain: A Systematic Review of Studies Using Ambulatory Assessment. Journal of Pain. https://doi.org/10.1016/j.jpain.2023.10.021

Villatte, M., Villatte, J. L., & Hayes, S. C. (2016). Mastering the clinical conversation: Language as intervention. Guilford Press.

ACT plus exercise, vs exercise alone…

and what a shame there was no ACT alone group…

No secret here, I like ACT (Acceptance and Commitment Therapy) as an approach for living well with chronic pain. I like it for many reasons, but probably the most compelling ones are that the hierarchy between therapist and person living with pain is minimised (we’re both humans finding our way through life) and that it doesn’t require the person to delve into challenging or disputing thoughts – this in turn enhances adherence to the core elements of ACT: living a life aligned with what really matters to this person. People seem to find using ACT more appealing than other forms of therapy for chronic pain.

Anyway, just recently a new study investigating ACT plus an additional exercise component (for eight weeks of physiotherapy supervised exercise, and ACT led by a psychologist), vs a supervised exercise programme only. This recent publication is a 12 month follow-up from the original (Casey et al., 2022).

The design of this study involved participants referred to an outpatient musculoskeletal clinic living with any chronic pain condition. Participants were excluded from the trial if they needed further diagnosis, experienced a major medical or psychiatric diagnosis, had cancer, an ‘unstable’ inflammatory condition, substance misuse, some kind of surgical or interventional procedure in the previous 3 months, were part of another supervised exercise programme or were taking part in psychological or physiotherapy treatment, or had attended a previous multidisciplinary pain programme – or couldn’t exercise because of some contraindication.

The two approaches were: (1) an ACT programme with exercise – 8 weeks of once a week two hours of ACT, then a 1.5 hour of exercise led by a physiotherapist who had not undertaken ACT training; and (2) 8 in-person supervised physiotherapy exercise sessions that followed the same structure as the ACT plus exercise. The same therapist led both groups of participants in the exercise component.

The primary outcome was pain interference as measured by the Brief Pain Inventory at 12 months follow-up, with secondary outcomes of pain intensity (BPI), the Patient Health Questionnaire-9 for depression, and the General Anxiety Disorder-7 to assess anxiety. Patient satisfaction was measured, along with the Patient Global Impression of Change. “Process” oriented measures (designed to measure factors thought to change over time and influence outcome) of pain self efficacy, pain catastrophising and the TSK were also taken, along with two measures from ACT, the Chronic Pain Acceptance Questionnaire and the Committed Action Questionnaire.

There were some intriguing changes to the original protocol including redefining some of the measures from outcomes into process measures, and the exercise intervention wasn’t fidelity tested.

What did they find? Well, a bit underwhelming for a person who likes ACT, to be honest! Both groups showed the same amount of pain interference, though with a slight tendency towards the ACT + exercise group which became significant only at one year. No other differences between the two groups were identified with the exception of slightly reduced pain catastrophising in the ACT + exercise group. Participants were happy with the ACT + exercise programme vs the exercise only, and the same participants reported positive responses to the global impression of change question.

Interestingly, there were more drop-outs from the exercise-only group, and the authors also report that the therapist contact time wasn’t equivalent. With a very low follow-up response rate (slightly higher for the ACT + ex group), again it’s not really possible to definitively know just how effective either approach was. The authors also point out that participants weren’t encouraged to use ACT approaches during the exercise part of the ACT + exercise programme because the physiotherapist wasn’t trained in ACT.

Some unanswered questions for me from this study, which was well-conducted within the confines of funding and patient availability.

One big question for me is why movement practices aren’t routinely part of ACT for chronic pain anyway. Certainly the way I practice, and the way physiotherapists I know who have learned ACT and use it routintely, wouldn’t add a non-ACT-based movement intervention into the mix. Given we know that movement practices are an ideal context for employing ACT methods, I’m curious as to why the principles that have been part of CBT approaches to pain management (ie all the team adopt the same over-arching model, employ the same strategies) weren’t adopted here. It’s during movement practices that sticky thoughts arise, and when leaning in to discomfort with pain and anxiety and sadness is highly relevant. They’re also a great time to work with self-as-context given how relevant self-concept is when setting movement practice challenge intensity. Of course, I’d still argue that movement practices can be decontextualised from daily life, and there is always a need to get out of the clinic and into the real world, however even in a ‘gym’ or ‘exercise class’ setting there are opportunities for physiotherapists (and other movement practitioners) to apply ACT strategies.

That the team members didn’t share skills across the team raises yet again the problem we have with siloed treatment. Interprofessionalism is sorely needed to ensure consistent practice of any kind of approach, whether it’s a physio using ACT to work with sticky thoughts and mindlessness, or it’s a psychologist understanding enough about movement and bodies to reinforce that movement is a good thing. It’s like the interprofessional nature of chronic pain management hasn’t yet gone very far, and I wonder why given how many decades it’s been since this was first proposed (at least since 2005, see McCallin, 2005).

Arguing for exercise (about which we know a reasonable amount) head-to-head with ACT + exercise feels a bit redundant to me. We know movement is a good thing. We know the effect sizes are small on both pain intensity and disability, and we know these are consistent findings for almost any treatment approach for chronic pain. We also know that ACT for chronic pain is slightly better adhered to than other forms of therapy, and that it seems especially helpful for people who avoid and are freaked out (though not so much as to make us use it everywhere). What we don’t know, and this study, along with many others, can’t tell us, is whether it made a big difference to the unique and individual daily lives of participants.

Some other missing information that I’ve commented on before. We don’t know the regular movement practices of participants prior to entering these programmes. We don’t know whether participants maintained their movement practices beyond the end of the eight week programme. We have no idea whether the movement practices were enjoyed by participants although we do know that people attending the ACT + exercise were more satisfied than those just attending exercise. We don’t know anything about their lifestyles before, during or after the study, so we don’t know whether the gym or hydrotherapy were exercise practices they valued. We also don’t know whether they transferred any of the learning from the movement practices into other parts of their lives – step counts do not equal daily life. We don’t know anything about the participants family life, their sense of curiosity and joy, or even whether participants who weren’t working during this study were able to return to work or find work.

If we are going to be serious about helping people with persistent pain live lives they value, isn’t it important to find out what people want to be able to do in their worlds? If we want to know how well a therapy works, shouldn’t we attempt to find out a bit more about the person’s world so that anything we offer can actually be done long-term? Life is more than a series of exercise programmes and psychotherapy – life is full of surprises, awe, devastation, busy periods, slow times, grief, love, births, deaths and other health problems. While designing studies is hard, I wonder if we’ve come to the end of the usefulness of further studies exploring movement/exercise for chronic pain. The studies don’t seem to be adding much – just that movement practices are good for health. We kinda know that. Let’s get far more creative and work out how people can integrate all sorts of movement practices for the entirety of their life, throughout all of their life contexts, in all that they do. And let’s do the same for ‘psychological’ approaches. In fact, can we move from siloed ‘physio, psychology, OT, nursing’ and into ‘pain therapists’ and remove the death grip we seem to have for ‘our unique contribution.’ We have far more in common than not in pain therapies, and there is considerably more power in a united approach than a fragmented one.

Casey, M. B., Smart, K. M., Segurado, R., Hearty, C., Gopal, H., Lowry, D., Flanagan, D., McCracken, L., & Doody, C. (2022). Exercise combined with Acceptance and Commitment Therapy compared with a standalone supervised exercise programme for adults with chronic pain: A randomised controlled trial. Pain, 163, 1158–1171. https:// doi. org/ 10. 1097/j. pain. 00000 00000 002487

Casey, M. B., Takemasa, S., O’Reilly, T., Leamy, M., Mc Kearney, E., Buckley, M., Smart, K. M., Segurado, R., Lowry, D., Flanagan, D., Gopal, H., Hearty, C., & Doody, C. (2024). Exercise combined with Acceptance and Commitment Therapy for chronic pain: One-year follow-up from a randomized controlled trial. European Journal of Pain. https://doi.org/10.1002/ejp.2229

McCallin, A. (2005). Interprofessional practice: learning how to collaborate. Contemp Nurse, 20(1), 28-37. https://doi.org/10.5172/conu.20.1.28

Living with pain is social: The Chronic Pain Couple book review

Over the past year or so I’ve kept returning to ‘the social’ part of our multifactorial pain experience.* Pain can be extraordinarily isolating, and our current sociopolitical emphasis maintains a focus on ‘what the individual should do.’ In New Zealand, our accident compensation legislation is a no-fault, 24/7 everywhere, all-the-time innovation but it falls short in critical areas. One is the continued focus on ‘physical findings’ to validate a diagnosis (and to show that the resultant impact on an individual is entirely due to a personal injury caused by accident), and the other is the attention only to the person who has sustained the injury.

The focus on individuals has led us to therapy for chronic pain targeting outcomes such as returning to work, independence in the home, and reducing the cost of compensation. Important outcomes, believe me. But what hasn’t been fostered nearly as much is – relationships, intimacy, whanau, interdependence, joy and meaning in therapy. This has left a huge gap for people living with pain who may not have very much attention paid to their relationship with their loved ones. And bringing your partner/lover into therapy? Yeah nah. Let’s just say that New Zealanders are a reserved bunch.

Karra Eloff writes from her own experience and the wisdom of a lot of research in her book The Chronic Pain Couple. Karra lives with chronic pain (spondyloarthritis) so she’s informed by her personal knowledge having worked through the impact of her pain on her own life and relationships. While not everyone will have such an adaptable and supportive person in their life, I was struck by the gentle encouragement in her suggestions for practical actions the person living with pain and their partner can take. Her writing is honest and warm, relatable and clear.

Let’s dive into the structure of this work.

The first part is about pain – how pain is the person’s experience, unshared and unclear. How others in our life (I’m writing as the person with pain here) may be unaware of even simple things about what we do to manage our pain. Even pain intensity that varies isn’t something I communicate to my wonderful man – I keep it to myself, unless it’s really in a flare-up. Karra describes needing to be in hospital with a flare-up and reaction to a new medication, and finding her husband didn’t know what her usual regime was. This first section works through some ideas about chronic pain as ‘over-protection’ and while some people will quibble about the particular orientation she brings I would hope people can read beyond this and on to the heart of what she’s communicating. Because the heart is to know that pain is isolating and we need to communicate on at least three points as a start. One is to communicate what we need (because no-one is a mindreader); then communicating our love (understanding what we prefer – and working out how this can be done in the presence of pain); and finally, how to disagree without breaking your heart.

Practical takeaways from this section: (1) letting your partner know the practical help they can offer you and having a kind of signal so they know when they should. For example, I get brain fade after a day of people contact, so my partner knows it’s a good idea to grab a simple meal, or takeaways, so I don’t have to think ‘what’s for tea tonight?’ (2) create structure around how to talk about your pain and your needs – making it a special, dedicated time that’s not when you’re already cranky! (3) perspective taking when you’re disagreeing – and not responding in the heat of the moment. Explaining why you make a decision, and offering alternatives, or at the very least, exploring how else the two of you can connect.

Part two examines pain and the impact on mental health (and vice versa), as well as looking at trauma and life orientation. Understanding that assumptions we develop when young do have an impact as we become adults; unpacking the effect of early life (and later life) trauma on both the nervous system and our desire to protect our selves; and learning how to probe these assumptions are all integral to learning to love and cherish yourself – and then others. Karra uses a conventional CBT approach to working with assumptions and core beliefs and while this isn’t my preference, her words are more compassionate than many CBT resources I’ve read.

She then moves on to part three on mental medicine. I’d quite like to call this ‘opening up to yourself’ and viewing both you and your partner through a lens of ‘we’re both probably struggling with something but our somethings are different.’ It’s a lot about seeing the impact of pain on both sides – compassion for yourself, and compassion for your partner. Seeing that both of you probably had an idea of what life together would look like – and pain has slipped in where it wasn’t expected. Even if you met your partner after you developed pain! The last chapter in this section looks at what you can do to support your partner – yes, you the person with pain. Because relationships are reciprocal, interactional, and both parties add to the whole. Karra goes on to look at how you can together generate low energy but life sustaining ways to build on the positives in your relationship. Such practical actions!

The fourth part looks at sex and intimacy and why it matters – and how to work together to create a fulfilling intimacy when you’re sore. Sex and intimacy is not something we’re often taught – and knowing how desire ‘works’ and how pain can interfere with desire is powerful. Practical steps in this section include having good discussions with your partner about what feels good and what doesn’t, about prioritising intimacy, about starting the day with ways to build a bond (no, not just sex), about knowing why intimacy and sex are important…and being OK with knowing that sex and intimacy might not be about orgasm, but about feeling valued, destressing, pleasure, to have adult time, to play… and using these values as ways to build your willingness for intimacy even when you’re sore. I like that Karra’s suggestions are small, steps that don’t require a total relationship overhaul (but might lead to one!), and show both sides of the pain couple interaction.

Finally, she turns to the ‘new normal’ – building lifelong ways of living alongside chronic pain, in a relationship, and moving towards richness and, as she puts it, joyfulness and having a remarkable relationship. She doesn’t define what your remarkable relationship looks like – that’s your job, and she doesn’t mince words about the challenges – and yet I’m left feeling like she’s standing right beside me as I consider my relationships.

In case you didn’t realise, I highly recommend Karra’s book, it’s a lovely work that sheds light on an area of living with pain that just doesn’t get much attention. If you see people living with persistent pain, this is a good book to read. If you are a person living with pain – this book offers some ways through, together with your partner.

Final note: the book is not super expensive (NZ$44.99 from the publisher, plus, I’m guessing, shipping). It’s hard cover and the paper is deliciously smooth and creamy. Not a lightweight paper that’s prone to tearing. It’s also available on ebook and audio (and Karra tells me reading the audio was a loooooong process!).

*I could use the over-used term ‘biopsychosocial’ or even ‘sociopsychobiological’ but let’s not get into that hackneyed discussion!

The difficult balance between evidence-based healthcare … and person-centred self-management

For decades I’ve been an advocate for evidence-based healthcare because the alternative is ’eminence-based healthcare’ (for healthcare, read ‘medicine’ in the original!). Eminence-based healthcare is based on opinion and leverages power based on a hierarchy from within biomedicine (read this for more!). EBHC appealed because in clinical practice I heard the stories of people living with chronic pain who had experienced treatment after treatment of often invasive and typically unhelpful therapies, and EBHC offered a sifting mechanism to filter out the useless from the useful.

Where has EBHC led us? Well, we don’t use back belts or rest for low back pain like we did. And we know that movement/exercises can be helpful.

And then I get stuck.

When we look at exercise, the most widely touted therapy for chronic pain in New Zealand Accident Compensation Corporation pain programmes, we don’t have many clues as to which type of exercise is best for the various forms of pain. We know the effect sizes are dismal for both pain intensity and disability. We know many people just don’t do their exercises without being supervised. And we have no idea just how long people will carry on with exercise once they leave a formalised programme. Worse: we don’t know whether the exercises prescribed during a bout of pain will stand the test of time – because for most people with chronic pain, pain is just that, chronic. It’s chronic. Ongoing. It recurs. It flares up. And people live for decades with it. Are those exercise programmes wasted money?

In other words, EBHC studies have given us a few ‘what not to do’ moments, but are largely equivocal when it comes to how people with pain can live their own lives for the rest of their lives.

When I listen to people with pain and hear their stories of what they’ve been told and received for their pain management, the EBHC paradigm doesn’t seem to have gone very far. Many people have been taken first down the biomedical line of medications, imaging ‘for reassurance’, surgical opinion, and once those avenues don’t work, perhaps physiotherapy (at least, here in NZ). Not terribly evidence-based, given we’ve known that imaging for low back pain is not recommended and hasn’t been for decades (at least since 1997 and the NZ Low Back Pain Guidelines), while medications are a pretty mixed bag of side effects and limited pain reduction (Chaparro et al., 2012; Koes et al., 2018; Taylor et al., 2021).

In physiotherapy what’s offered? A combination of ‘corrective’ or ‘therapeutic’ exercises, maybe some hands on therapy, perhaps some coloured tape, probably some theraband or resistance gadget, education to explain pain, and… ? Goals get set, to be achieved, then…?*

Pretty devoid of, and distant from, daily life and lifespan needs. Not terribly meaningful. (No, goals are not inevitably meaningful, especially when they’re set within the first hour of therapy before the person has had a chance to consider what really matters.)

You see, thinking very critically about exercise and especially the majority of RCTs, they’re shoddy. We often don’t know exactly what exercises were set (nor how they were decided on). We rarely know anything about the movement practice backgrounds of the person, and very little about how long they’re expected to maintain their exercise prescription – or whether they do. We don’t know about the person’s living situation, whether it’s safe and they have sufficient time to undertake their prescribed exercises. We don’t know whether those exercises affect the specific physiological processes we hope they do. And yet exercises are prescribed on the basis of these studies.

Attempts to investigate why people with pain don’t adhere to exercise prescriptions have found that lack of treatment impact; the relationship with the physiotherapist; the burden of actually doing exercise; and not always understanding why exercise might be a good thing – all influence long-term adherence (Dickson, et al., 2024). Vader and colleagues (2021) found that pain and fatigue get in the way of exercising; perceived risks of exercising; personal beliefs about exercise; competing demands in life; motivation; other health problems – and having adequate supports to do exercises.

In other words, life and personal views about exercise intrude on whether exercise is something people will do.

Exercise is one of many ways people self-manage their life with pain. Exercise gets prescribed in pain management and rehabilitation in part because it provides a vehicle for compliance. If a person doesn’t want to do the prescribed exercise programme, they’re pushing stuff up hill and likely to get labelled. It might surprise people to know that despite my abhorrence of The Gym and 3×10 reps, I love movement and it’s a critical part of my life with fibromyalgia. Exercise as defined and prescribed in much of clinical practice today, however, is over-hyped, used as a form of control over people receiving pain therapies, is often rigid and the problems people face with doing movement practices aren’t addressed. The relational and daily life needs and values of people with pain aren’t featured in RCTs, consequently they don’t get incorporated in clinical practice. Self-management is all about what people do to live their own lives alongside pain – if movement practices are a good thing, they need to be fit for purpose for life.

*What isn’t demonstrated in RCTs for exercise? Relationships between the person and their therapist. The bits that are HARD, often called ‘soft skills’, that don’t get fully developed in a module on communication (which is often about what the therapist should say), the parts that need support and a supportive relationship with someone who cares about the therapist’s development, and the parts that potentially lead the clinician into being flexible and OK with ambiguity and liminality.

Chaparro LE, Wiffen PJ, Moore RA, Gilron I. Combination pharmacotherapy for the treatment of neuropathic pain in adults. Cochrane Database of Systematic Reviews 2012, Issue 7. Art. No.: CD008943. DOI: 10.1002/14651858.CD008943.pub2.

Dickson, C., de Zoete, R. M. J., Berryman, C., Weinstein, P., Chen, K. K., & Rothmore, P. (2024). Patient-related barriers and enablers to the implementation of high-value physiotherapy for chronic pain: a systematic review. Pain Med, 25(2), 104-115. https://doi.org/10.1093/pm/pnad134

Ferro Moura Franco, K., Lenoir, D., Dos Santos Franco, Y. R., Jandre Reis, F. J., Nunes Cabral, C. M., & Meeus, M. (2021). Prescription of exercises for the treatment of chronic pain along the continuum of nociplastic pain: A systematic review with meta-analysis. Eur J Pain, 25(1), 51-70. https://doi.org/10.1002/ejp.1666

Koes, B. W., Backes, D., & Bindels, P. J. E. (2018). Pharmacotherapy for chronic non-specific low back pain: current and future options. Expert Opinion on Pharmacotherapy, 19(6), 537-545. https://doi.org/10.1080/14656566.2018.1454430

Sackett DL, Straus SE, Richardson WS, et al. Evidence-based medicine: how to practice and teach EBM . London: Churchill-Livingstone; 2000.

Taylor, S. S., Noor, N., Urits, I., Paladini, A., Sadhu, M. S., Gibb, C., Carlson, T., Myrcik, D., Varrassi, G., & Viswanath, O. (2021). Complex Regional Pain Syndrome: A Comprehensive Review. Pain Ther. https://doi.org/10.1007/s40122-021-00279-4

Vader, K., Doulas, T., Patel, R., & Miller, J. (2021). Experiences, barriers, and facilitators to participating in physical activity and exercise in adults living with chronic pain: a qualitative study. Disabil Rehabil, 43(13), 1829-1837. https://doi.org/10.1080/09638288.2019.1676834

Circling back to supported self-management

I’ve been writing a bit about supported self-management over the last few months. Partly because it’s topical given that medications and exercise offer very small reductions in pain and disability, and people do have lives outside of swallowing a pill and doing 3×10 reps! And partly because it is what we end up doing. It is the bulk of what people living with pain use to have lives.

Self-management refers to a broad range of strategies people with pain use in their daily lives to help them live well. I’m aware of the multiple definitions that exist for self-management, and that the level of agreement isn’t great – and of course, throughout my discussion I always consider self-management to be supported. Supported by relationships with health professionals, friends and family, and within healthcare systems. Or perhaps not so much the latter.

Drawing on Nicholas & Blyth’s commentary from 2016 (because it’s pretty good), the key elements of self-management are:

  • being actively involved in daily actions to manage the effects of pain
  • knowing about pain and the options for managing pain
  • monitoring signs and symptoms and responding to these
  • collaborating with health professionals and others to develop ways of living around pain

From my perspective, some of the things that seem to be important in self-management are:

  • Knowing how to set limits on demands/obligations from others. This is important because, whether we like it or not, pain does limit how much we can do. I’m not certain this is always considered, especially when I hear of people with pain being asked to do far more than I am expected to do. It is reasonable for people with pain to say no! Being able to say no shouldn’t come with a host of negative consequences like ‘you’re being noncompliant’, or ‘you’re not trying hard enough’, or ‘you’re just using our pain as an excuse to get out of things.’ Unfortunately, for those with an accident insurance claim, the consequences of saying no can be pretty harsh.
  • Knowing how to adapt, adjust, tweak or vary anything being suggested. This includes mindfulness, exercise, medications, pacing… And this one is a doozy because there are some very shouty people who think that their way to [insert strategy here] is The Way. If we had agreement we’d all be seeing good results, right? We don’t, and we see so many different ways of doing [insert strategy here] that I think we can be pretty confident that there is no One Way to do any of them. Contextual sensitivity is needed. What this means is being able to adapt, adjust, tweak or vary the things to suit the purpose and the context. “How it functions in this context” is likely more important than “what it looks like in a healthcare context”.
  • Being able to feel the effect. To know what it feels like, and use this as the guide for action. No I don’t mean only the short-term effects (resting does feel great at times) but over the longer term. Asking: Does this [insert strategy here] give more options, allow me to move towards the things that matter, adapt and adjust over time? Helping someone feel what it feels like so they can use that ‘body knowledge’ in any context probably means less talking from the therapist, and more guiding to notice and reflect. Now that’s a set of skills many therapists have never been taught, particularly movement therapists.

I’ve written before about the way ‘the social’ is often ignored in a ‘biopsychosocial’ approach to pain. The factors that fall into the social are the very ones those of us living with chronic pain most have to deal with. The social impacts on how much we’re listened to by health professionals and others, whether we can say no without harsh consequences, how OK it is to adapt, adjust, tweak or vary how we do anything (including the things clinicians suggest), how much notice we take of our own body (because we’re often being talked at, taking our attention away from what we’re actually experiencing), and even on whether we can get to have a decent sleep (I am that person sneaking away from a social event and snuggling down in my bed at 9.30pm!).

Social factors also popularise what’s on offer, how much these things cost, who is able to offer them, and whether they fit in our lifestyle. Our gender, age, ethnicity, cultural background, religion, socio-economic status, education, the type of work we do – all of these are social. And they make an extraordinary difference to how we can employ self-management. A study by Webster et al., (2022) examined what people with chronic pain do in their health work in the context of having difficulty making ends meet.They found there is work in managing chronic pain alongside poverty and subsistence, trying to legitimise their needs (and themselves), attempting to adhere to biomedical models (even when it is clear that social contextual factors are hugely contributing), and navigating multiple diagnoses. The authors call this ‘chronic struggle’ – a term that resonates with my experiences listening to people with chronic pain as a clinician. The experiences they describe are ‘the social’ – and clinicians, we need to listen.

If you’re working in a supermarket job, you can’t just stop the queue of people at the checkout to go do a stretch and pace yourself. The skills needed to make that happen are in those three self-management skills: to safely say no, to be able to adapt (etc), and to use how it feels to guide actions. The social aspects of doing self-management take grit, confidence, great communication skills, and quite a lot of personal power. And for many people with chronic pain, being assertive and taking control over what is expected from you is high risk.

The social is about participation, if you’re going to use ICF (WHO – ICF). Participation is all about being able to do the things – in ICF-speak it’s “… involvement in a life situation… Participation restrictions are problems an individual may experience in involvement in life situations.” and goes on to say “…Because the current environment brings in a societal context, performance as recorded by this qualifier can also be understood as “involvement in a life situation” or “the lived experience” of people in the actual context in which they live.”

Self-management, because it is about daily life, is inevitably about participating in life situations. It’s up to health professionals to learn about a person’s real daily life contexts to make sure that what is suggested as ‘self-management’ can actually be done, and to help people with pain develop those three skills I’ve suggested at the very least. And for all of us to push back on attempts to limit our ability to do those without kickbacks.

Nicholas, M. K., & Blyth, F. M. (2016). Are self-management strategies effective in chronic pain treatment? Pain Management, 6(1), 75-75–88. https://doi.org/https://doi.org/10.2217/pmt.15.57

Webster, F., Connoy, L., Sud, A., Rice, K., Katz, J., Pinto, A. D., Upshur, R., & Dale, C. (2022). Chronic Struggle: An Institutional Ethnography of Chronic Pain and Marginalization. J Pain. https://doi.org/10.1016/j.jpain.2022.10.004

Guarding and flow: an observational study

It’s been a while since I reviewed a paper but this one caught my eye! Amanda C. de C. Williams is one of my favourite researchers because her work captures social and anthropological aspects of pain – and she’s been researching and teaching for a very long time.

This study is an observational study of physiotherapists watching videos of people with chronic low back pain doing movements. The movements are pretty decontextualised (ie they’re not integrated with everyday life activities) but they are the kinds of movement that people can find difficult. They were: reaching forward with arms horizontal in standing position (reach forward), bending down towards the toes in standing position (forward-bend), standing from sitting stand), and sitting from standing (stand-to-sit). The videos were of 10 people with low back pain, and were chosen from a larger set of 16 people all performing each movement twice: choice was based on showing both sexes, a range of ages, and as wide as possible variation in pain-affected movement. Most lasted less than 30 s.

Sixteen physiotherapists were included, and these were working in senior positions in full or part-time work with people experiencing chronic pain. The average time since graduation of these clinicians was about 21 years (10 – 33 years range).

Each physio watched eight videos drawn from the set of recordings, and were asked “How would you describe the movement”, with further probes such as “Would you describe it as guarded, slow?” etc, and “when do you notice the movement being different/abnormal?”, “did the movement have flow?” and “what single piece of advice would you like to give the patient to help with this movement?”

The analysis followed framework analysis method, which is aligned to thematic analysis but with the use of existing theory (eg deductive analysis rather than inductive where the themes are developed de novo from the data itself), carried out by one researcher, while another independently completed an inductive analysis on ‘flow’. The two forms of analysis were compared and found to be very similar despite the different approach to thematic analysis.

What did they find? Well, this is intriguing because we rely on physiotherapist’s observations to understand movement patterns when considering clinical reasoning and ultimately therapy. Guarding was identified but typically qualified by noting its presence in part of a movement, or a body part. Agreement was not high. Ooops.

Guarding was, however, different from ‘stiffness’, ‘slowness’, and ‘bracing’ – stiffness considered to be ‘rigid’ or ‘wooden’, while guarding was considered more in terms of emotion. Bracing wasn’t really identified except for taking weight through the hands (hands on thighs) when moving from/to sitting and standing.

Guarding was described as ‘cautious’, ‘protective’, ‘fearful’ and ‘avoidant’ – a sense of reluctance to move, and participants related this to the part of the body moving at the time such as ‘thoracic spine’ or ‘didn’t want to move the lumbar spine’. Interestingly, participants anxiety about the movement weren’t commented on…

Flow was also not very consistent between the physiotherapists, but what was interesting was that therapists commented on the limited information about the person in context, there seemed to be more curiosity about the person and their beliefs and feelings than in the observations of guarding. Flowing movement was described as ‘lovely’ or ‘intuitive’ or ‘confident’ and seemed to be described as expressing confidence in the movement, even if the actual movements themselves were idiosyncratic.

In the discussion, these authors report that while there wasn’t a great deal of agreement between physiotherapists on the specifics of guarding and flow, once they were asked to elaborate on their analysis they were more consistent when observing and describing tension or apprehension.

Why would this study matter? What does it add?

One of the characteristics of movement in people who are feeling sore is a quality of hesitation or a lack of ‘fluid’ movement – flow. The descriptions from this study suggest that while these therapists, who were highly experienced, weren’t consistent between one another, they did pick up on flowing movement based on movement tempo, and perhaps might represent something described as by Csikszentmihalyi. Not over-controlled, nor un-controlled. Looking effortless, moving freely between positions, no sudden changes in speed between parts of the movement or parts of the body.

The advice these physiotherapists gave also aligned with Csikszentmihalyi’s idea of ‘just-manageable’ (the ‘just-right’ challenge), stopping or altering the movement right at the point just before the guarding or hesitancy occurred.

The authors then discuss what they believe matters from this study. What matters is that movement qualities appear to reflect both emotions and ‘bio’ limitations, and these physiotherapists were able to identify them, albeit not very consistently.

Guarding is a term used often in pain movement rehabilitation. Flow – not quite so much. There’s some good evidence that movements related to a real world activity rather than a decontextualised fragment of a movement are more variable, more accurate (when accuracy is important) and more flowing (see Wulf, G., & Lewthwaite, R. (2016). Optimizing performance through intrinsic motivation and attention for learning: The OPTIMAL theory of motor learning. Psychonomic bulletin & review, 23(5), 1382-1414.). People also try harder when it matters to them – so they’re more likely to walk briskly to catch a bus than when being asked to ‘show me how you walk’ and their gait pattern is likely more variable.

I’m always about understanding the real world and what it is that people need and want to do in their own life context. If movement therapists (a very broad church!) could be more consistent in the way they observe and interpret movement practice in a person’s own daily life, we’d likely have fewer exercise interventions that bear little resemblance to what a person actually wants and needs to do. Getting fitter, while a worthwhile goal, may not help a person feel confident to lift their mountain bike onto the bike carrier on the back of their car, or to carry their wriggling child into bed, or even to manage vacuum cleaning the whole house at the end of the day when they’ve been busy in the garden. The effect sizes of exercise, like almost everything else in chronic pain management, are small on both pain intensity and disability – and I think exercise is over-emphasised by comparison with the other things a person needs and wants to do in their day.

I look at a study like this, and I wonder if the faith that people place in the movement analyses of therapists should be tempered a little with knowing that: 1. The level of agreement between these experienced therapists was quite low, it’s likely to be lower in less experience clinicians. 2. Decontextualised movements don’t look a lot like real world contextually-embedded movements that we need to do. 3. Flow or movement fluidity could be a useful construct to investigate because it seemed to influence these clinicians towards exploring, with curiosity, more about the person than their assumed body movement deficits, while searching for guarding seemed to elicit more focus on biomechanics. 4. The final sentence of the abstract really resonates: “Movement behaviours associated with pain are better understood in terms of their particular function than aggregated without reference to function.”

I have a bunch of methodological questions – like what were the ethnic backgrounds of each of the people in the video? were they sore at the time of the recording? why weren’t real world activities used? why were there two methods to data analysis (this is partly explained)? But for now, this study piqued my curiosity, so I shared it!

Update from one of the authors (Prof Amanda C de C Williams) re the questions I’ve posed: (NB my interpretation, not word for word).

The ethnic/cultural backgrounds of participants were mainly white – and this is an acknowledged limitation of this study. The research team were more diverse however.

All participants reported pain of moderate intensity at least – 5/10, and some found the movements quite demanding.

The reason decontextualised movements were used relates to the equipment available at the time of this study. The monitoring equipment was not wireless, so people were trailing cords and in a shielded environment. A more recent study being carried out is far less intrusive, uses real world activities and people aren’t encumbered with wires and things.

At the time, the purpose was to train machine learning, so standard movements were used – now that this has been achieved, real world and complexity can be added.

Finally, two different forms of analysis were undertaken because this team was not in the one location, and one of the team members was being trained. While it could be considered a weakness in the study, having two forms of analysis converge on similar themes suggests consistency (it would be called triangulation if there was another person in the mix!!).

Williams, A. C. C., Buono, R., Gold, N., Olugbade, T., & Bianchi-Berthouze, N. (2023). Guarding and flow in the movements of people with chronic pain: A qualitative study of physiotherapists’ observations. Eur J Pain. https://doi.org/10.1002/ejp.2195