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

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.

“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

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

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