Catastrophising: Nuance is needed

The last two posts I’ve written here and here have explored differing perspectives and current debate about the term catastrophising – and I hope I’ve been clear that I don’t dispute the usefulness of (or the accumulated data about) a construct that is associated with poor outcomes across so many pain experiences. I just don’t find the term and its definition lands well with people living with pain, and the way it’s discussed amongst some clinicians is problematic. This post is my take on a nuanced approach.

The term catastrophising is defined as ‘an exaggerated negative mental set’ (Sullivan et al., 2001). Exaggerated, according to Oxford Languages dictionary, means ‘regarded or represented as larger, better, or worse than in reality.’ This means someone, somewhere needs to define ‘reality’. The argument presented by Crombez et al., (2024) is based on the complete lack of external referent for how someone should experience their pain. Pain is, as we all accept, a subjective experience. We have no external referent for how pain ought to be experienced: its intensity, qualities and meaning are individual. What we do have are inferences about ‘how bad’ pain is based on what we observe in another person, and our interpretation of what we might be like in the same situation. In other words, we use social cues, compare these with our social norms, and make a judgement.

Given we know that women, people of colour, those who don’t speak the dominant language, people who are ‘different’ and especially when there are intersections between these ‘differences’ – are likely to have pain intensity under-estimated (see this post). If the social norms we draw on are skewed, we need to ask how valid are the judgements made based on them.

Nevertheless, catastrophising has been associated with greater distress, disability and poor recovery, so what are we to do?

If we unpack the three subscales of the Pain Catastrophising Scale (Sullivan et al., 1995) they consist of (1) ‘ruminating’ or brooding on/difficulty disengaging from thoughts about pain; (2) ‘magnifiying’ or thinking the worst about pain; and (3) ‘helplessness’, or feeling there’s nothing that can help.

I’m pretty sure we’ve all had times when it’s been hard to stop brooding on a problem. Particularly in a situation of uncertainty, or where we’re trying hard to solve the problem but can’t find a way through. The ruminating subscale looks a lot like, as some authors describe it, ‘misdirected problem-solving’ (Flink et al., 2012). Doing what human brains do – setting out to solve something that maybe can’t be solved. ACT has a lot to offer in this regard with strategies for cognitive defusion, willingness and present-moment awareness.

When it comes to thinking the worst, let’s step back to see how people acquire their beliefs and feelings about pain. I ask my 5th year medical students to rate how much pain they expect to feel when asked to hold their hand in 4 degree C water for up to two minutes. I then ask them how they made that judgement given most people won’t have done it before. Their answers are revealing: they’ve seen the Wim Hof videos, they’ve jumped into a cold pool or river, some even go winter sea swimming. They’ve watched other people do it. They’ve gulped an icy cold drink and got ice-cream headache. They make inferences based on what they know, either from direct experience in similar situations, or from watching others.

Now ice water isn’t comfortable, and the students are doing this knowing that: (1) I can’t harm them because ethics; (2) it’s only for two minutes; (3) they’re in a room with all their peers but their responses are anonymous. Quite different from clinical situations where: (1) people don’t know that their pain isn’t something nasty; (2) the pain may continue for quite some time; (3) the person may be alone and their responses about pain intensity will influence treatment decisions.

People acquire their understanding about pain from media, seeing other people having similar experiences, having family members with similar experiences, looking at the interwebs, their own past experiences… They may have heard health professionals tell others (or on social media) ‘5 things making your back pain worse’ (real example, but no link – let’s not share unhelpful stuff like ‘…it is also crucial that we AVOID THE WRONG THINGS that would aggravate your pain and make it worse!). And given humans unrivaled skill to associate concepts (eg click) it’s no wonder they consider pain is terrible.

It’s not surprising people fear pain. While I don’t think we have an ‘algogenic’ society, we do have a lot of very unhelpful messaging about pain and the need to get rid of it.

Pain always holds meaning. It’s the meaning of this experience I think people are communicating when they respond to the ‘magnifying’ items on this subscale. Meaning develops from personal experience and from these external sources. Meaning doesn’t arrive fully-formed. It has a back story.

Finally, the ‘helplessness’ subscale measures the sense of being unable to do anything to help yourself. In the absence of a diagnosis (or when a diagnosis suggests only ‘experts’ can help), when the future is uncertain, when what is read about and available in the community suggests quick fixes are the thing but then they don’t work for that person, it seems reasonable to not know what to do, and feel stuck.

To summarise, we don’t have a objective measure for ‘how bad’ pain is, because it is a subjective experience with meaning to the individual experiencing it. We tend to judge another person’s demonstration of their pain in the way we think we would if we were in the same position (while retaining our privileged understanding). We live in a community where pain is routinely considered either easy to fix (with these simple steps) or incredibly difficult to fix (you’ll need surgery, hard core medications, or a life of misery). And people don’t know what to do in these situations because it’s outside of their experience (or it hasn’t gone well in the past).

I haven’t yet discussed the pejorative tones in which the term ‘catastrophising’ is used by some clinicians. This attitude is not something that can be easily ‘educated’ out of people because it arises from deeply embedded ideas of mind and body, and negative attitudes about those who experience mental ill health. These ideas are perpetuated in clinical education where nociceptors are discussed but not the ’emotional’ experience that is integral to the definition of pain. It’s furthered in medico-legal and compensation settings. Questions about ‘motivation’, ideas that clinicians can ‘detect malingering’ or ‘true effort’, notions that what’s seen in clinic represents daily life, ignorance about our own human biases … these are such complex and ingrained attitudes amongst people who hold incredible political power – and after more than 30 years consistently working to shift the dial it’s over-simplifying to suggest education is the fix.

The final point that came up for me when I read Sullivan and Tripp’s paper (2024), was the suggestion that the term should be used only by professionals with certain training, and only to other health professionals. This smacks of a certain elitism. People read their clinical reports, and they’re entitled to. The reports are often sent to other people within the health system – including insurers who may not have any clinical training whatsoever. FWIW I do agree that clinicians using the term NEED to learn about what it actually measures. Catastrophising is in the public domain, Pandora is out of the box. And as I keep harping on about: Nothing about us, without us. For person-centred care, people with pain are part of the conversation. Our voices matter and we are the people being judged. If treatments are intended to help us live well, all clinicians need to remember that we are not inert slabs of flesh. A preferable term to replace ‘catastrophising’ might be ‘pain-related distress’ or ‘pain-related worrying.’ These seem more apt than ‘exaggerated negative mental set.’ Normal people dealing with an abnormal situation. Retain the construct of difficulty disengaging from thoughts about pain; understand how helplessness comes about; and remove the term ‘exaggeration’ from the lexicon.

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

Flink, I. K., Boersma, K., MacDonald, S., & Linton, S. J. (2012). Understanding catastrophizing from a misdirected problem-solving perspective. British Journal of Health Psychology, 17(2),

Sullivan, M. J., Bishop, S. R., & Pivik, J. (1995). The pain catastrophizing scale: Development and validation. Psychological Assessment, 7(4), 524.

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

Catastrophising – the views of people with pain

Last week I posted the first in a series on pain catastrophizing. This week, instead of looking at the measurement instruments, I thought it worthwhile seeing what people with pain feel when looking at this construct. After all, when we’re talking about us (people with pain) shouldn’t our perspectives be taken into account? Nothing about us without us.

Webster and a large team of collaborators (Webster et al., 2022) conducted possibly the largest study examining the responses of people living with pain to the terms associated with catastrophising. Now the number of collaborators on this project tells you one thing, but what counts more is the quality of that study, so here goes with my attempt to understand it.

Firstly, it was an international survey study conducted online with invitations distributed very widely. The study was undertaken with full collaboration and inclusion of people living with pain (who preferred the term ‘patients’ throughout). Participants were over 18 years with chronic pain, or caregivers of those with chronic pain provided they were answering as proxies for those individuals. They were initially asked four questions:

(1) Have you heard of the term ‘pain catastrophising’?,

(2) Where did you first hear the term ‘pain catastrophising’?,

(3) Has a healthcare provider ever described you as being a ‘pain catastrophiser’ or said that you were ‘catastrophising’ your pain, or used the term to discuss your pain care?,

(4) If you answered yes to the previous question, thinking back to when this term may have been applied to you, please circle the number that best describes your level of agreement/disagreement with the following statements.

They were then asked to indicate their experiences and opinions of the term. After these first items participants were given a definition and explanation of the term pain catastrophising, drawn from the literature, and then asked three open-ended items: (1) what comes to mind when you hear the term pain catastrophising? (2) what would be a better term for pain catastrophising?, (3) Is there anything else you would like to tell us about the topic? And finally given 8 alternative terms that they could rate for suitability to replace the current term.

Who responded? Firstly, 2911 people took the time to answer the survey. That’s a good number! As usual and probably due to accessibility and reach of the survey, 77.3% of respondents were from the USA, and overall the majority of respondents were from well-developed countries such as Canada, Australia, New Zealand etc. Though there were about 2.4% who came from a range of other countries – and these were a mix of European, African, Middle Eastern and others. Most of the respondents were female (82.1%) aged on average 41-ish years, and 95% reported ongoing pain, with pain durations of more than 10 years.

Now to the goodish news. 44.5% had heard of the term pain catastrophising, but only 12% indicated they’d been described as ‘catastrophisers’ – and then the not so goodish news: but those who had been described this way felt they were being blamed, judged, and dismissed.

The authors then took the free text responses to the questions about what pain catastrophising meant and the consequences of that label on their care. Remember, they were asked about their reaction to the definition given “what first comes to your mind” and 1839 participants did respond! 68% of people didn’t spontaneously report negative experiences, but 32% did, using terms like ‘exaggeration’, ‘dismissive’, ‘overreaction’, ‘dramatisation’, ‘blame’, ‘hysterical’, ‘faking’, and ‘minimising.’ Responses were divided as to whether the term was useful with 80 individuals suggesting it was OK, and another group indicating that they acknowledged that ‘catastrophising’ wasn’t helpful to them with negative attitudes coming from clinicians indicating they thought it was, in the words of one respondent ‘…a bit demeaning and blaming.’

For those who had identified they’d been described as ‘catastrophising’ the response to the term depended on the care they subsequently received. Some people found the label meant they felt they were being called liars, their concerns were minimised, the felt blamed, and dismissed, and often feeling judged, ignored and belittled. And some even suggested the use of the term meant they felt clinicians thought their pain was not real, and 7 participants found this was used as a ‘weapon’ against them. Some respondents felt that by describing them as catastrophisers ‘the term minimised their pain or otherwise created a sense they could bring it under control if they tried harder.’ Others pointed to stigmatising because it ‘minimises the experience of the patient and immediately makes it a mental health problem and not a real medical problem.’

The authors also identified there were comments relating to negative gender stereotypes in 169 instances, with respondents stating they perceived women in particular were likely to have their pain minimised, while another said that the term ‘redirects the medical gaze away from other causes such as trauma’ saying ‘It fosters clinical distance by dehumanising the patient as a ‘catastrophiser’, reducing their experience to a syndrome and blaming it on them.’

When respondents were asked to rank alternative terms, there were mixed responses – from ‘If you are only looking for a more palatable term for the same condescending mind set, what is the point?’ to ‘How about not labeling it as a medical problem? It may be a normal reaction to an abnormal situation rather than a pathology.’ One that stood out to me was this: ‘Patients who have much experience with chronic pain and what it’s like when it is untreated or not treated adequately ‘anticipate’ what may be coming, and rightly so.’

In the discussion, the authors argue that while 2/3 of participants in this study did not spontaneously hold negative views about the term ‘pain catastrophising’ there were numerous distressing reports from those who had been given this label. They point to other researchers (Amtmann and colleagues, 2018, 2020) documenting patient concerns about stigma and blame from clinicians who themselves have few tools to help – and also indicated that participants described lack of caring and concern by clinicians who had given them this label.

The authors also point to changes in how the construct is perceived. It was originally thought to be a ‘trait’, ie a relatively long-standing aspect of how a person dealt with pain uncertainty. Now it’s becoming more apparent that pain catastrophising is mutable, changeable even outside of clinician interventions. They go on to say that even if the term is somewhat pejorative, the construct itself isn’t likely to go. It’s been so consistently associated with negative outcomes – and I for one, am not suggesting this research is irrevocably flawed. It’s the TERM that is troublesome, and the way in which clinicians use it to negatively label people.

Where do I stand with this now? Firstly, while the study was a large one, and conducted internationally, and with people living with pain as part of the research team, it has flaws. Only people with access to the internet (and knowledge of the study) responded, and there’s limited information about literacy and social factors. They’re also from WEIRD countries (Western, educated, industrialised, rich and democratic). We know little about their treatment experiences, or current pain problems – but many had pain for more than 10 years, so we can guess their pains are ‘treatment resistant.’ We also know that clinicians are less comfortable working with people who ‘don’t respond’ to treatment (just think of ‘failed back surgery’). These characteristics aren’t a problem – they simply point to the inherent bias in this kind of study. Bear that in mind when reading the conclusions.

I take up some of the points made in the 2024 papers by Connoy & Webster; Crombez, Scott & De Paepe; and yes, Sullivan & Tripp. Firstly, the language we use to describe a phenomenon is ‘sticky’ courtesy of relational frame theory. For a really good paper discussing how RFT applies in pain, you can’t go past Beekman et al., (2019). Language has power because it not only describes, it also shapes what is described, and we make associations between concepts – like ‘catastrophising’ and ‘hysterical’ and ‘women’ and ‘stigma’. Connoy and Webster argue that appealing to ‘disciplinary authority’, as Sullivan & Tripp do, is unhelpful because the term is used and abused in public education, media and press statements, social media visibility of scientific work where people communicate in open forums. Connoy and Webster also point out the limited acknowledgement by Sullivan and Tripp to the higher scoring on ‘pain catastrophising’ by women and Black people, saying they fail to acknowledge the historical and contemporary racialised and gendered contexts of clinical encounters. The key point Connoy and Webster make is that ‘Pain catastrophizing is a clinically constructed term that when uttered by clinicians labels some people’s responses to pain as maladaptive, irrational, and disordered.’

Crombez and colleagues (2024) on the other hand, point to the problematic way the concept is measured, based on analyses of the items used to identify who is, and who isn’t, ‘catastrophising.’ Similarly to Connoy and Webster, they agree that the decades of research into this idea should still stand – it’s the term that is problematic. If the measurement instrument is thought to measure something, but it measures something else – then let’s acknowledge that ‘something else’ and give it a meaningful name. They also argue that it’s not possible to identify whether someone is actually ‘view[ing] or present[ing] pain or pain-related problems as considerably worse than they actually are’ because we don’t have a gold standard measure of ‘normal’ in relation to the subjective experience of pain, and neither do we have ‘experts’ who can make these judgements in relation to an individual and their pain. They prefer to consider the experience of people with pain as ‘normal individuals in an abnormal situation.’

Finally, Sullivan and Tripp respond to these points in detail, saying that people using the term ‘pain catastrophising’ need to have better education about the construct, be more informed about who to use it with, and not to use it to stigmatise people with pain. I’ll dive into their response next week, suffice to say that once the genie is out of the bottle it’s pretty hard to put it back in. Unfortunately, terms describing psychosocial aspects of pain so often get misused that I think ‘education’ with respect to pain catastrophising is unlikely to reverse the very real stigma experienced by those who get described in this way.

Amtmann D, Bamer AM, Liljenquist KS, Cowan P, Salem R, Turk DC, Jensen MP (2020). The concerns about pain (CAP) scale: A patient-reported outcome measure of pain catastrophizing. Journal of Pain 21:1198-1211.

Amtmann D, Liljenquist K, Bamer A, Bocell F, Jensen M, Wilson R, Turk D (2018). Measuring pain catastrophizing and pain-related self-efficacy: Expert panels, focus groups, and cognitive interviews. Patient 11:107-117.

Beeckman, M., Hughes, S., Kissi, A., Simons, L. E., & Goubert, L. (2019). How an Understanding of Our Ability to Adhere to Verbal Rules Can Increase Insight Into (Mal)adaptive Functioning in Chronic Pain. Journal of Pain, 20(10), 1141-1154. https://doi.org/10.1016/j.jpain.2019.02.013

Connoy, L., & Webster, F. (2024). Why Language Matters in Chronic Pain: The Example of Pain Catastrophizing. Journal of Pain, 25(3), 588-590. https://doi.org/10.1016/j.jpain.2023.12.012

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

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

Webster, F., Connoy, L., Longo, R., Ahuja, D., Amtmann, D., Anderson, A., Ashton-James, C. E., Boyd, H., Chambers, C. T., Cook, K. F., Cowan, P., Crombez, G., Feinstein, A. B., Fuqua, A., Gilam, G., Jordan, I., Mackey, S. C., Martins, E., Martire, L. M., . . . Darnall, B. D. (2023). Patient Responses to the Term Pain Catastrophizing: Thematic Analysis of Cross-sectional International Data. Journal of Pain, 24(2), 356-367. https://doi.org/10.1016/j.jpain.2022.10.001

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.

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

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

Book review: Your Pain Playbook by Helen Roome

There is an enormous missing link in pain management today. That link is, as I see it, how to translate from theory (decontextualised ideas) to daily life. To my life, to your life, to the unique and varied lives people living with pain had before their pain arrived.

Your Pain Playbook is written by Helen Roome, pain occupational therapist living and working in South Africa. The South African vibe runs through her book, giving this Kiwi a lovely taste of Helen’s country via the metaphors she uses – ever heard of the ‘Go-away bird’? It’s a bird that warns impala of impending danger and Helen uses this as a metaphor for the unhelpful attention-grabbing aspects of pain where pain isn’t necessarily an indication of danger to our tissues.

I love the way Helen brings not only a modern understanding of pain from a ‘brain’-centric perspective, but also weaves in knowledge about the way our entire body ‘eco-system’ is primed to inform us of potential harm. Pain emerges from this eco-system, giving us many options to help settle the experience down. She draws on experiences you and I will most certainly have had (like random bruises appearing without us being aware of how we got them!) to help readers understand their own bodies and how pain can be influenced by many things.

The book is divided into six weeks of seven day brief readings and activities. She starts with a word about goal-setting – and a lovely approach this is, too. Now while I’m not so keen on the old ‘SMART’ goals idea, the way Helen describes the process – including how to handle setbacks – is lovely and clear. She includes ways to tweak goals, both to increase demand, and to reduce the challenge if it’s not working out. And most importantly, she has a focus on doing in YOUR world. So instead of 7 goals, one for each day of the week, she reminds us to look at 5 days as success. Yay!

While it is written as a six-week programme, Helen emphasises that you can choose which chapter to start with. So if you have trouble with sleep, start with chapter 2 all about sleeping better. If you want to focus on moving more – start with chapter 3. Chapter 4 is about stress, and 5 is about looking at rhythms and patterns in daily life to create a sustainable lifestyle that’s going to fit you. Chapter 6 is about being present, or mindfulness and the good things that come from engaging your curiosity and compassion – and doesn’t just look at ‘sit still and breathe’ but also other ways of bringing mindfulness into your life. Each chapter offers options for what you want to look at next, along with some great suggestions for goals that fit with the theme of that chapter.

The final set of resources are practical tools to document your daily routine and manage your flare-ups (because, folks, this is one thing often omitted from pain management books – pain doesn’t always go away completely, it often sneaks back in and sets you back again. A set-back plan is essential so future you is prepared!).

What I love about this book, apart from the things I’ve mentioned above, is that this is an authentic and real approach to learning how to live well with pain. While I think it would be best used alongside a group of others or a clinician (because changing habits is so HARD!), the step-by-step approach written in language that is simple to understand with practical actions and points to ponder is so good.

BTW if you’re a geek as I am, the reference list is delicious!

I read Your Pain Playbook on a Kindle Scribe where the layout on portrait mode is really good. I’m not so sure it would work on the smaller Kindle format, and it can be a little slow to load when moving from page to page. A printed version would be fabulous to have, provided the pages lie flat.

And finally, a word about my reviews. I buy books myself so I can review them without obligation. Helen is a fellow occupational therapist, and it is so good to read someone else writing about the daily doing of supported pain self-management. We need more of this approach not just in books, but in pain management programmes and on social media. Pain self-management is not so much about the ‘did I lift this correctly’ or ‘have I identified and changed my thinking’. It’s not even about ‘did I do the right set of exercises’ or ‘do I understand pain neurobiology’. Living well with pain involves making sense of the weird stuff that happens when pain becomes a hitch-hiker, deciding what really matters and what your life is going to stand for, and then digging in to the details of how you can find your personal wiggle room to be and do the things that matter to you. This means all those daily decisions about how to say no to things, when to move and when to rest, getting a decent night’s sleep, being able to calm a stressed self down, and ways to get energised to do the things that need to be done.

If you’re a pain clinician, you might find the approach Helen’s described in Your Pain Playbook a revolution – please, read it and know that these seemingly small shifts, these habits and practices, these myriad ways to incorporate principles of pain self-management absolutely ARE what we as clinicians need to encourage. Stop dictating to people, and begin exploring and being curious about how we can live well in the presence of pain. Pain will do its thing, meanwhile you’ll be helping people live their life.

Your Pain Playbook: Effective daily strategies for life beyond pain. Helen Roome.

Resources

Self-management skills we don’t often discuss

I’m back from my summer break (I’m in Aotearoa/New Zealand – we shut down over Christmas/New Year just like the US and UK do over July/August!), and I want to begin with a cracker of a topic: medication management!

Now I am not a prescriber. I don’t hold any ability to write prescriptions of any kind, not even exercise ;-). Yet most of the people I’ve seen in clinical practice have started their journey living with pain by being prescribed medications.

All medications have side effects, true effects (well… maybe), adverse effects, and the human factor: taking them in the way that optimises the pharmacodynamics of the drug. It’s this last part that can sometimes be omitted by prescribers. Or at least, that’s my take after listening to hundreds of people over my clinical career.

What do I mean? Well, all drugs have a kind of ‘release profile’ as the active ingredients are metabolised (broken down) in the body. Most drugs will be released gradually into the system, peak after a certain time, and then gradually reduce in concentration until there’s no active ingredients (metabolites) left. There’s a difference between what we feel (the effects we experience) and how long the metabolites remain present – people using cannabis, for example, will know that the effects of euphoria/calm/sedation/relaxation wear off reasonably quickly, but the metabolites hang around in the fatty tissues for months (Lucas, Galettis & Schneider, 2018). Alcohol is metabolised at a fairly predictable rate, but the experience of being intoxicated differs for each person depending on their tolerance, the food present in their belly, fatigue, gender and so on (Greaves, Poole, & Brabete, 2022).

When prescribing a drug, the prescriber usually holds some assumptions about how it’s going to be used. Most medications are intended to be taken regularly at the same time of day every day – the prescriber should take into account things like any sedating effects, any other side effects, and the effect the person and prescriber are looking for. But people do some weird stuff with medications and may not take them in the way the prescriber thought they would.

Why do some people not take a pill at the same time every day? Well, some groups of people don’t find it easy to hold to a schedule – people with ADHD, people working shiftwork, people who have kids (especially newborns!). Some people think of pain medications as a bit like optionally taking paracetamol (acetaminophen) - take it as needed, no worries if you don’t take it all the time. This is OK for acute (short-term) pain, where you’re pretty confident the pain will reduce over time, but not so good for chronic pain where the pain is present to a greater or lesser extent for months. And some drugs given for chronic pain need to be taken consistently to get the effect you’re looking for. Some people might worry that medications used routinely could lead to dependence or tolerance. Dependence is about physiological adaptation to the presence of a drug leading to a ‘withdrawal’ effect if the drug isn’t present. Tolerance is the process of the body adapting to the presence of a drug and needing more and more to get the same effect. There’s no doubt that both of these processes can occur in some an analgesics (pain relief), particularly opioids, and careful prescribing and taking the medications as they are intended to be taken is critical.

Sometimes the side effects of a medication can be almost as useful as the active ingredient. A case in point is the sedating effect of tricyclic antidepressants. For someone with persistent pain, sleep can be something we’d dream of if only we could get some sleep! So, knowing how long it takes before feeling the sedative effects of a tricyclic antidepressant, and how long that sedation can last, can be used thoughtfully to decide the best time to take a dose. For example, some tricyclic antidepressants begin to give that sedating feeling about two hours after taking the dose – and that sedated feeling remains for around 12 hours. Taking this kind of drug ‘at bedtime’, or when you want to get into bed to fall asleep, might mean you have a hangover effect because most of us don’t have the luxury of a 12 hour sleep! But taking it a couple of hours earlier, or around 12 hours before you want to get up, might mean you fall asleep more easily and wake up without the hangover. Checking with your prescriber or your pharmacist-dispenser to work out the best time to take a drug is really helpful to optimise both the side effects and minimise the negatives.

Medications are an important part of pain management for some people. The hit rate for getting the gold standard ‘50% reduction in pain’ is pretty low, and for many people there is no medication to touch the sides of pain (see Katz et al., 2015 for a nice discussion about NNT; and Patel & Dickenson, 2021 for info on just how poorly individual drugs work. They advocate for ‘multimodal’ prescribing, but unless this is done very carefully I’m not 100% convinced, and the evidence for this approach is, as they say, scant). I’m one of these people who find nothing I’ve tried has reduced my pain at all. So the effectiveness of any medication depends a lot on you and how your body metabolises the medication. I wish you all the very best if you are one of those who gets a good response to medications – hoorah!

What should you do if you’re thinking about using medications as part of your pain self-management?

Be prepared to try a few out, because it is always a trial in YOU and YOUR experience with a medication that matters.

Give the medications a decent trial – two weeks at the recommended dose, noting all the effects of the drug on you, your pain, your ability to think straight, your sleep, and your ability to do the things you want and need to do in life. This might mean using a diary to record the dose, the time you took it, bedtime, wake time, and then any medication effects you notice.

Most important, make sure the medication has a positive effect on your ability to do things. If you have so much sleepiness with a drug that you can’t do things, it might reduce your pain, but does it do much for YOU?

ALWAYS WORK WITH YOUR PRESCRIBER! Prescribers are responsible for what they write down on the prescription, and for ensuring the benefits outweigh any harms. They should know how the drug is thought to work, and the effects, side effects, pharmacodynamics and interactions with other drugs and substances you are using. Prescribers need to recognise that in pain relief, YOUR experience is YOUR experience. There are good reasons why some medications don’t help some kinds of pains (the ‘analgesic ladder’ was developed for cancer pain, not for chronic pain. Many types of chronic pain don’t respond to opioids – fibromyalgia being one of them).

Ask questions about the medication you’re prescribed. Ask about how long it takes to kick in, how long it will hang around in your system, why you need to take it at a certain time, and what you can expect as side effects. Ask if you need to take it with food, or on an empty stomach. Ask if you should avoid things like grapefruit juice (it can interfere with processing some meds). Ask what the therapeutic dose is, and how to build to that dose. Also ask how to reduce the dose if you don’t like the effects. If your prescriber is too busy to answer these questions, ask your pharmacist-dispenser (they know SO much about drugs!).

In the end, only YOU can tell whether it’s worth it. And it is OK to stop taking a drug if it’s not doing anything for you – just do with with the support of your prescriber. Clinicians, if you’re not a prescriber, get familiar with the current prescribing practices, understand the drugs and their presumed effects, become aware of the side effects and be ready to listen to the person and recommend they see their prescriber or pharmacist-dispenser for a detailed conversation about timing and managing meds long-term.

Greaves, L., Poole, N., & Brabete, A. C. (2022). Sex, gender, and alcohol use: implications for women and low-risk drinking guidelines. International journal of environmental research and public health, 19(8), 4523.

Katz, N., Paillard, F. C., & Van Inwegen, R. (2015). A review of the use of the number needed to treat to evaluate the efficacy of analgesics. J Pain, 16(2), 116-123. https://doi.org/10.1016/j.jpain.2014.08.005

Lucas, C. J., Galettis, P., & Schneider, J. (2018). The pharmacokinetics and the pharmacodynamics of cannabinoids. British journal of clinical pharmacology, 84(11), 2477-2482.

Ryan Patel & Anthony H Dickenson(2022)Neuropharmacological basis for multimodal analgesia in chronic pain,Postgraduate Medicine,134:3,245-259,DOI: 10.1080/00325481.2021.1985351

Self monitoring – focusing on pain too much? or an essential part of living with pain?

I was just a tiny bit surprised when I looked at the results of my self-management strategy survey: self monitoring was smack bang in the middle of the list! Take a look yourself –

Self monitoring is not something we discuss much in pain management circles. It’s like ‘Oooh if you keep noticing your pain you’re fixating on it and that’s bad!’ and yet I suspect it forms part of the background interoceptive awareness that most of us do whether we live with pain or not.

Let’s take a deeper look at it.

The ‘definition’ I used was ‘noticing your pain intensity, thoughts, activities and varying your expectations so you can do what really matters’ – in other words, being aware of how you’re feeling (noticing) and making deliberate decisions about where to spend your energy/time.

Interoception is a fundamental process in body awareness and homeostasis. Quigley and colleagues (2021) describe a function of interoception as ‘signaling about the body’s energy status, which then drives the behaviours needed to renew energy resources’ (Quigley, et al., 2021). Philosophical questions about assumed functions aside, the term is used to refer to ‘the overall process of how the nervous system (central and automatic) sense, interprets, and integrates signals originating from within the body, providing a moment-by-moment mapping of the body’s internal landscape across conscious and unconscious levels’ (Berntson & Khalsa, 2021). In other words, this system (process?) gives us information on what is happening in the body that we then respond to either with involuntary/below conscious awareness responses, or voluntary/consciously aware behaviour. By knowing about the internal body state we can be guided to rest, eat, be active, be afraid, be curious, explore or withdraw and hide.

We would think, then, that because this system/process aids our survival, we’d be pretty tuned to what’s going on and act accordingly. BUT if you’ve ever found yourself watching an engrossing movie, or been out with friends, knowing you need to pee but just not going – you know that feeling the feels doesn’t always mean doing the doing! And for people who have particular jobs (the Beefeaters, bakers, pilots, models….) where the urge to deal with body sensations must be suppressed because [reasons], the ability to over-ride body sensations and focus on the task is critical. In fact, kids in school need to learn when it’s OK to pee, eat or wriggle – and it’s those kids who have a hard time developing social skills (ADHD, ASD etc) that often raise the ire of teachers.

So, we learn what our normal ‘body states’ are and develop strategies to periodically over-ride the initial urge to do something in response in order to live in a social world.

For people living with something like widespread body pain (aka fibromyalgia) one of the challenges is that our bodies are ‘over-sensitive’ – so sitting for me is not my favourite thing, at least, not without wriggling a lot. In one sense, my interoception is a little over-jigged, while part of me wonders whether in learning how not to ‘over-react‘ I’ve maybe learned to be a bit insensitive. Di Lernia et al (2016) conducted a systematic review that found that people with chronic pain might have low accuracy for things like noticing their heart rate, and the labeling of those interoceptive experiences might not be terribly accurate. The challenge is studying these processes without confounding the findings with after-the-fact beliefs or justifications (see below).

But interoception is also about hunger and satiety – and we’re moving into Christmas, so there are all those cues to eat and drink foods we wouldn’t normally have and in quantities we wouldn’t normally eat. Tied in with this is memory (ever felt hungry around dinner time even thought you ate a large lunch?) and emotions. One theorist argues that emotions are ‘interoceptive sense data that are categorised in a specific situation using an emotion concept’ (Quigley et al., 2021; Seth, 2013). In other words, we experience our ‘self’ as an organism with a ‘this is how my body feels’ in various contexts based on integrated predictions from past experiences that in turn help us decide what to do and how we feel. In part, our thoughts might emerge out of these interoceptive senses almost as cognitive justifications or explanations after the fact.

Where does all this lead us when it comes to self-management? Well, one thing we all might benefit from remembering is that interoception, like all our sensory and perceptual apparatus, likely varies across individuals. Some of us are probably more sensitive and aware of how ‘we’ feel, while others might be less so. The effect of pain that persists might influence the attention a person places on both that area of the body – and perhaps other areas of the body too (internal or external). Maybe by attending mindfully to how ‘we’ feel (internally and externally), people with pain can be less likely to over-focus or ignore sensory experiences. Some researchers are stimulating C-fibres at a particular frequency and pressure, to help reduce pain (Di Lernia et al., 2020), arguing that by amplifying the interoception a person’s system receives, they can develop a less reactive (ie reduced pain) response.

What I can say is that there are many anecdotes and a few reasonable studies showing that by learning to attend to (notice) the body and titrating activity levels accordingly people can allocate their energy to where they want to. It’s a kind of ‘pacing’ (but this is a vexed term, and more on this another time!) – and means that instead of pushing really hard to maintain the one level of activity, people can maintain a more flexible level of doing by acknowledging that sometimes we are simply tired, and need a break. In this instance please note I’m not talking about the ‘rehabilitation’ phase of therapy where increasing the amount a person can consistently manage is often the focus – what I’m talking about is the lifelong approach to managing activity, energy, emotions and daily doing that happens after rehabilitation is done and dusted.

You see, the thing is that people living with pain have lives. Lives aren’t the same from day to day, year after year. People do catch colds, grieve, celebrate, get enthused about something then decide it’s not going to be a long-term part of their world. We are always developing and evolving – noticing how we feel and our energy/emotions/thoughts can help us make decisions about what to prioritise in a day or a week. Focusing on pain to the exclusion of noticing anything else in life is probably not going to help you live life. Failing to notice what your pain is up to is equally likely not to help you live life. The former is ‘hypervigilance’ while the latter is a lot like ‘gritted determination.’ For me coming up to Christmas, I’m taking some time to notice my fatigue is a bit more than I’d like (and some random achey bits doing their thing too) so I’m not going to go leaping into Christmas shopping at the mall. I’m planning on a quiet internet shop so I don’t have to and I can instead spend my energy on making my home feel lovely and inviting. Flexibly persisting means being more like water than a wall.

Berntson, G. G., & Khalsa, S. S. (2021). Neural Circuits of Interoception. Trends Neurosci, 44(1), 17-28. https://doi.org/10.1016/j.tins.2020.09.011

Di Lernia, D., Lacerenza, M., Ainley, V., & Riva, G. (2020). Altered Interoceptive Perception and the Effects of Interoceptive Analgesia in Musculoskeletal, Primary, and Neuropathic Chronic Pain Conditions. J Pers Med, 10(4). https://doi.org/10.3390/jpm10040201

Di Lernia, D., Serino, S., & Riva, G. (2016). Pain in the body. Altered interoception in chronic pain conditions: A systematic review. Neurosci Biobehav Rev, 71, 328-341. https://doi.org/10.1016/j.neubiorev.2016.09.015

Quigley, K. S., Kanoski, S., Grill, W. M., Barrett, L. F., & Tsakiris, M. (2021). Functions of Interoception: From Energy Regulation to Experience of the Self. Trends Neurosci, 44(1), 29-38. https://doi.org/10.1016/j.tins.2020.09.008

Seth, A. K. (2013). Interoceptive inference, emotion, and the embodied self. Trends in Cognitive Sciences, 17(11), 565-573. https://doi.org/10.1016/j.tics.2013.09.007