What’s the relationship between pain intensity and functional limitations?

This question comes up from time to time as some commentators strive to “find the cause and fix the problem at all cost.” The argument is that if pain was gone, the person would simply return to their old life just as they were. And for what it’s worth, there’s certainly a relationship between pain intensity and disability, and pain intensity and distress – but it’s not simple.

One of the earliest papers I read when I was beginning my pain management career is one by Waddell, Main, Morris, Di Paola & Gray (1984). Gordon Waddell was an orthopaedic surgeon with an interest in low back pain – and an equal interest in what people do when they’re sore. In collaboration with Chris Main and others, he examined 200 people referred from family doctors for low back pain, and analysed psychological questionnaires administered to this same group. The process this team used to establish the results was rigorous by any standard, but especially rigorous at the time: they carried out pilot interviews and exams on 182 people, then carried out a further analysis of impairment and disability on a different group of 160 people, conducted this study with 200 people, and further cross-checked with a second group of 120 people.

What did the team find? Well, putting aside (for now*) the judgements about “inappropriate responses” to examinations and “magnified illness behaviour” they found that people who were highly distressed demonstrated more of these “inappropriate” and “magnified” behaviours. Makes sense to me as it did to Waddell and colleagues – their analysis was “They may develop as a largely unconscious and socially productive ‘cry for help’ but, unfortunately, in the absence of due help they may, in themselves, add to disability and become counterproductive.”** The table below (from p. 212 of this paper) shows that physical impairment was the most significant contributor to disability.

But hold on a minute! In the prestigious Volvo Award winning paper, Waddell (1987) then shows a wonderful graphic that encapsulates just how complicated this relationship is. In it, he shows that “objective physical impairment” (remember this is in back pain) has a correlation of just r=0.27 with pain, and r=0.54 with disability, while the relationship between pain and disability was only r=0.44.

In other words, if pain and disability were directly related, there would need to have a relationship of 1:1 between pain intensity and functional limitations. There is not – so “other things” intrude or influence the relationship between pain and disability. Again in this paper, Waddell shows that there is little difference in pain intensity between people who go and see a health professional for low back pain, and those who don’t (and seeking healthcare is a pain-related behaviour, or illness behaviour) – because what we do about pain depends a great deal on what we think is going on, and on what we think a health professional can do for us.

Now because these papers are old, they’ll likely be discounted so I dipped into the enormous literature on pain and disability. I thought I’d ask if having a successful surgery that removed pain led to a “return to normal.” A 2010 paper by Bade et al., found that in knee replacement surgery “Compared to healthy older adults, patients performed significantly worse at all times for all measures (P<.05), except for single-limb stance time at 6 months (P>.05). One month postoperatively, patients experienced significant losses from preoperative levels in all outcomes. Patients recovered to preoperative levels by 6 months postoperatively on all measures, except knee flexion range of motion, but still exhibited the same extent of limitation they did prior to surgery.” So that’s a study using boring old functional assessments and disability measures: what if the person was getting surgery so they could do something they enjoy, perhaps golf? Jackson et al., (2009) found that only 57% of golfers returned to golf after total knee arthroplasty, with 81% golfing as often, or more, than before their surgery – but only 14% walked the course after surgery. And these were keen golfers with no pain after their knee replacements!

Kovaks et al., (2004) also found that “Clinically relevant improvements in pain may lead to almost unnoticeable changes in disability and quality of life. Therefore, these variables should be assessed separately when evaluating the effect of any form of treatment for low back pain.” The two important tables showing how correlations changed over time are below. On day 1, a 10% increase in VAS (ie pain intensity) increases disability by only 3.3%, and quality of life by 2.65%. On day 15, a 10% increase in VAS increases disability by 4.99% and quality of life by 3.8%.

Now I’m not reporting a large number of studies because – well, there are a LOT of them. Suffice to say that while there is a relationship between pain intensity and disability, it is not straightforward, and simply reducing pain does not mean a person will return to what they love doing, even golf! I’ve chosen older studies because it’s kinda helpful to look at older research to show that these ideas are not new. This poor relationship between pain intensity and function is something we should know already. We should have been taught this in our training. So catch up with the literature please!!

The factors that influence disability are many, and they’re not just biological. They include fears (of reinjury, of pain flare-up), they include other peoples’ responses to them (advice from health professionals, workplace requirements, family responses). They are real and mean that even once there is an effective treatment for forms of persistent pain (and we’ll be waiting a while for these), rehabilitation from a whole person perspective is crucial. In fact, in the golfing study, all the physical measures (strength, ROM etc) were fine – so it’s not about physical fitness, nor about pain intensity, it is about people being people. So we also need to be people working with other people.

*We cannot detect malingering in people with pain because we have no objective measure of pain. Psychometric measures don’t measure malingering (see Tuck, N. L., Johnson, M. H., & Bean, D. J. (2019). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. Journal of Pain, 20(2), 133-145. https://doi.org/10.1016/j.jpain.2018.07.002), and neither can we.

**For what it’s worth, if anyone suggests the “Waddell signs” can demonstrate who is malingering – go read Waddell’s own words, where he states unequivocally that these are indications only of psychological distress.

Bade, M. J., Kohrt, W. M., & Stevens-Lapsley, J. E. (2010). Outcomes before and after total knee arthroplasty compared to healthy adults. Journal of Orthopaedic Sports Physical Therapy, 40(9), 559-567. https://doi.org/10.2519/jospt.2010.3317

Jackson, J. D., Smith, J., Shah, J. P., Wisniewski, S. J., & Dahm, D. L. (2009). Golf after total knee arthroplasty: do patients return to walking the course? American Journal of Sports Medicine, 37(11), 2201-2204. https://doi.org/10.1177/0363546509339009

Kovacs, F. M., Abraira, V., Zamora, J., Teresa Gil del Real, M., Llobera, J., Fernández, C., & Group, t. K.-A. P. (2004). Correlation Between Pain, Disability, and Quality of Life in Patients With Common Low Back Pain. Spine, 29(2), 206-210. https://doi.org/10.1097/01.Brs.0000107235.47465.08

Waddell, G., Main, C. J., Morris, E. W., Paola, M. D. I., & Gray, I. C. (1984). Chronic Low-Back Pain, Psychologic Distress, and Illness Behavior. Spine 9(2), 209-213.

Waddell, G. (1987). 1987 Volvo Award in Clinical Sciences: a new clinical model for the treatment of low-back pain. Spine, 12(7), 632-644.

New year, new you! 10 Steps to Change Your Life!

Are you setting goals for this year? Did you decide to get fit? Eat healthier? Spend more time with your family? Be more mindful? Read on for my famous 10 steps to change your life!

Bah, humbug!

Reflect for a moment on what you’ve just read. Head to Google and do a search using the terms “New Year” and see what you come up with. My search page showed, amongst all the horrific news of car smashes and events for the holiday season, topics like “New Year Bootcamp: Get rid of your debt”, “cook something new every week”, “read more books”, “create a cleaning schedule you’ll stick to”…

Ever wonder why we do this? Every single year?

First, we buy into the idea that our life right now isn’t good enough. There are improvements we can [read ‘should’] make.

Then we decide what “good” looks like. Better finances, healthier diet, less time on devices, cleaner and tidier house…whatever.

We then read all the things we should do – apparently, improving body, mind and soul is good for… the soul.

The popular “experts” then tell us to use a planner, tick off daily fitness goals, and tackle small actions frequently.

Betcha like anything most of us will fail. Even if we begin with the best of intentions.

This year, I’m not doing “goals” – I’ve bought into the over-use of SMART goals for too long, and I’m rejecting them. Why? Because life begins to look like a whole bunch of tick boxes, things to do, keeping the “eye on the prize” at the end. But when is “the end”? Is it a set of “yes! I’ve done it” achievements? Little celebrations? Or do we feel coerced into setting yet another goal? Can goals prevent us from being present to the intrinsic nature of daily life? I think so, at least sometimes. A goal focus can take us away from appreciating what we have right now, while also detracting from the process of going through each day. We can lose the joy of running, for example, if we’re only looking to the finish line. We can forget the pleasure of fishing in beautiful natural surroundings if we’re only looking to hook a fish!

So, as a start to this year, I’m sitting still. I’m noticing my Monday morning routine as I slurp my coffee and sit at my computer to write my blog. I’m making a choice to be present with my thoughts and ponderings. I’m looking back at the blog posts I’ve made since 2007 – all 1262 of them! – and feeling proud of my accomplishment. I’m revisiting my “why” or the values that underpin my writing. I’m acknowledging that I’ve chosen to put my voice out there, whether others read what I write or not (FWIW readership is low compared with the heady days of 2008 and 2009!). These choices aren’t in a weird pseudo-spiritual mindful sort of way, just a nod to my habits and the underlying reasons for doing what I do.

I’ve been pondering the drive clinicians have to set goals with patients, and to record achievements. As if these exist outside of the person’s context and all the other influences on what a person can and does do. There are even posts declaiming patients for not “doing the work” even after the explanations and rationales are presented, as if the only factor involved in doing something is whether it has a good enough reason for it to be done. This attitude is especially pertinent when a person lives with persistent pain, and is embroiled in a compensation system with expectations for recovery.

I suppose I’m looking for more attention to be paid to strengths people demonstrate as they live with persistent pain. More awareness of the complexity of living with what persistent pain entails (see this post for more). And for us as clinicians to be more content with what is, despite limitations and uncertainty, ambiguity, frustration and limited ‘power’ to make changes happen.

Contentment is at the heart of “fulfillment in life” (Cordaro, et al., 2016). It’s an emotion with connotations of peace, life satisfaction, and, again according to Cordaro and colleagues, “a perception of completeness in the present moment.” In English, contentment invokes a sense of “having enough” and a sense of acceptance whether the situation is desirable or undesirable (Cordaro, et al, 2016, p.224). Contentment, in contrast to happiness, is considered a low arousal state: that is, when we feel content we experience reduced heart rate, skin conductance and is associated with serotonergic activity, while happiness in contrast activates higher arousal states including dopaminergic responses (Dustin et al., 2019). The table below gives some interesting comparisons between the “reward” and the “contentment” states in humans – take it with a grain of salt, but it makes for useful pondering.

When we think about helping people with persistent pain, how often do we consider contentment as a long-term outcome? To be content that, despite all the hard work the person and their healthcare team and their family and colleagues, this person has achieved what they can. Do we even have this conversation with the person? Giving them the right to call it quits with constantly striving for more.

How can we develop contentment for ourselves and for the people we work with? Should we guide people towards activities that foster contentment? These will likely be the leisure activities that take time, that involve giving without a focus on receiving, that calm people, that invoke nurturing (plants, animals, people), and probably those that involve moderate intensity movement practices (Wild & Woodward, 2019). I hope we’ll draw on occupational therapy research and practice, because these activities will likely be long-term practices for daily life contentment, and daily life is our occupational therapy focus.

For ourselves, I suspect fostering contentment will be more difficult. Our jobs, often, depend on finding out what is wrong and setting goals for a future state, not ideal for those wanting to be OK with what is. We often work in highly stressful and demanding contexts with numerous insults to our moral ideals and values. We debate ideas and approaches to our work with vigour. We make judgements about our own performance and that of others. We often find our expectations aren’t fulfilled and that we can’t do what we think/know would be better.

I’ll leave you with a series of statements about contentment compared with other states that can be related to contentment (Cordaro et al., 2016, p.229). It helps clarify, perhaps, what we might do for ourselves in this new year. Happy 2023 everyone!

Cordaro, D. T., Brackett, M., Glass, L., & Anderson, C. L. (2016). Contentment: Perceived Completeness across Cultures and Traditions. Review of General Psychology, 20(3), 221-235. https://doi.org/10.1037/gpr0000082

Dustin, D. L., Zajchowski, C. A. B., & Schwab, K. A. (2019). The biochemistry behind human behavior: Implications for leisure sciences and services. Leisure Sciences, 41(6), 542-549. https://doi.org/10.1080/01490400.2019.1597793

Lustig, R. (2017). The hacking of the American mind: The science behind the corporate takeover of our bodies and brains. New York, NY: Avery.

Wild, K., & Woodward, A. (2019). Why are cyclists the happiest commuters? Health, pleasure and the e-bike. Journal of Transport & Health, 14. https://doi.org/10.1016/j.jth.2019.05.008

How much “pain ed” do people need? And what to do when someone is not convinced…

This post has been a long time coming. There’s no doubt that giving explanations about pain mechanisms is common, and that we’ve (health professionals) been doing it a looooong time. Yes, way back to the 1970’s! In the early 1980’s when I started working in this field it was already commonplace to offer people an explanation for chronic pain (and to explain why some pains are such pains, while others bother us less – even when they involve the same degree of nociceptive input). Of course, way back then we used Gate Control Theory (GCT) to explain the distinction between hurt and harm, to explore why attention and emotion matter, and to introduce the idea of counter-stimulation and TENS: suffice to say clinicians used these metaphors especially for people with persistent pain (Katz & Rosenbloom, 2015).

Then along came Moseley, Nicholas and Hodges (2004) with a nicely-designed RCT comparing “pain neurophysiology” education with “back anatomy and physiology” provided by “trained physical therapist educators.” The results of this study showed “Education about pain neurophysiology changes pain cognitions and physical performance but is insufficient by itself to obtain a change in perceived disability.” Somehow the lack of relationship between changes in pain cognitions and physical performance and perceived disability got lost in translation, but what happened next was an explosion of interest in the effects of providing explanations about pain mechanisms.

Today, the old adage “if you have a hammer, all you see are nails” seems to apply when it comes to “pain mechanism explanations.” Everyone gets an explanation, many of the explanations are exactly the same (sometimes down to the same book being used), and I wonder how people with pain feel about this. Like the way we feel at the end of Christmas Day feasting – noooooo! not another mouthful!

Recently I was asked “how much pain ed do people need?” and my first thought was “it depends.” That’s my answer to most things in pain! Suffice to say, I think we need sound clinical reasoning before we launch into any intervention, and this means we need to understand the rationale for giving someone a pain mechanisms explanation. This post attempts to shed some light on when it might be useful.

One reason given for “educating” people (please, no! “educating” someone sounds so like an info-dump, and focuses us on what WE do, rather than on the EFFECT this information is intended to have) – one reason is to reduce pain intensity. Education, however, doesn’t have an incredibly powerful action on my pain when I burn myself doing silversmithing. The effect of information on pain may be via appraisal: if I think my pain is not a direct measure of tissue damage, then I might not be as distressed by it (and indeed, this is one of the effects identified in the Moseley, et al., 2004 study – changes in the Survey of Pain Attitudes and the Pain Catastrophising Scale showing reduced catastrophising brought about by recognising that hurt isn’t equal to harm).

As a result of not being as distressed, a person doesn’t have to communicate their fear through a number on a 0 – 100mm VAS. Because remember, we don’t have a pure measure of pain intensity and the VAS is a communication device. Pain behaviour, or what we do about our pain, is at least partly about communicating to others (Hadjistavropoulos et al., 2011; Lackner & Gurtmann, 2004) – and we all know we’d never get prescribed analgesia in an Emergency Dept with 30mm pain on a 0 – 100mm VAS!

Similarly, if we’re not as afraid of what pain means, we’re less likely to be worried about moving – so I wasn’t at all surprised to see the changes in straight leg raising and other physical performance measures. I also wasn’t surprised to see no change to perceived disability because doing functional activities in the real world is a whole lot more scary than in a controlled, supervised clinical setting. Remember this, folks, when you’re prescribing movement practices: they do not directly transfer into confidence and performance in daily life!

So if giving an explanation is about reducing distress, maybe it’s also about reducing uncertainty. Zaman and colleagues (2021) found that uncertainty hasn’t been studied as much as I’d hope and worse, it’s often studied in experimental settings where there is certainty that the pain will end, and this in turn is quite unlike me and my fibromyalgia pain which is both unpredictable and not controllable. There’s no doubt that helping someone understand that their pain isn’t a dread disease (cancer, some weird inflammatory disease, a nasty neurological – oh wait, it IS a nasty neurological thing…!) will likely reduce their distress, and might even reduce uncertainty – because at least we know what it’s not! But uncertainty remains with persistent pain because no-one knows when/if it will end, often we don’t know why it gets set off, and we clearly don’t have a handle on why it goes on and flares.

It makes sense, then, to consider pain mechanism explanations when a person 1) is not sure what it all means, 2) worries that it’s something nasty, and 3) thinks it’s both a direct reflection of what has happened to their tissues and 4) that they personally can’t do much about it.

We might also think of giving someone some information about their pain if we want to help them understand why we might be trying something like mindfulness, relaxation, stress management, or even normal movement. We can employ the little we know about cortical processes and descending inhibition, and polyvagal theory and sympathethic arousal, as well as physiological responses to movement/exercise to explain the rationale for these interventions if we so choose.

BUT we don’t have to all the time. Why? Because we can do these things anyway and help the person explore their responses in vivo! This may be more powerful than giving any kind of ham-fisted explanation, whether it be a cookie cutter one, or a tailor-made metaphor.

A few posts ago, I wrote about McCracken and Scott’s (2022) paper exploring the potential problems of making sense. This showed that sense-making can impede a person’s readiness to engage in therapy if their desire to make sense means they reject explanations that don’t fit with their understanding or when they overthink what the explanations mean. In these instances, it makes much more sense for us (see what I did then?) to help them begin to do what matters in their life than continue looking for explanations.

My guidelines for working through “pain mechanisms”?

• If the person is a geek and likes to delve into learning about their body and responses – go for it! (ie, people like me :-))
• If the person asks for information, or has questions about specific aspects of their pain or treatment
• As part of generating a case formulation, where the person and you collaborate to develop a model of what’s going on for them. As a clinician you’ll be using guided discovery to work out the processes that occur in predictable patterns, and these patterns in turn can become the focus of where and how you might interrupt them.
• After asking the person for their understanding, and there’s something in their version that’s unhelpful for their progress. For example, if the person tells you that they think a scan will uncover “the real reason” for their pain, or if they’ve taken on board an unhelpful belief that their joints are grinding bone on bone… you know the sort of thing. After asking permission to explore these thoughts/beliefs, you might find it OK to offer an alternative – but if it’s not getting in the way of them engaging in therapy, then just go along with it and use guided discovery instead.

What to do instead of explaining mechanisms?

• Focus on helping the person move towards what matters in their life, even if it doesn’t always make sense to the person. Use their experiences to guide their understanding, it’s far more powerful than any kind of external “truth”.
• Use guided discovery, drawing from their own experiences and asking them to reflect on the effect of what they do and know on their experience. For example, ask the person what it’s like when they’ve been worrying about what’s going on in their OA knee, what do they notice about their overall stress level, what does that do to their pain, what effect might that worry have on sleep or fatigue and how this might influence their pain and doing what matters.
• Offer skills to help deal with uncertainty and worries such as mindfulness (but OMG not to reduce pain, puhleaze!), attention management, and cognitive defusion.
• Always draw a connection between what you explain and what this means clinically. For example, if you want to discuss nociplastic mechanisms, what this might mean is a tendency for “normal” injuries or tissue disruption pain to hang around a lot longer. It might also mean pain spreads out a bit more. It can help explain why many medications are ineffective. And it’s useful when another clinician has suggested that because “there’s nothing on your scan, therefore there’s nothing wrong.” But tread lightly because there is SO much we do not know!

I like to draw on the principles of motivational interviewing in my work with people. Respecting their autonomy and right to decide means I need to ask permission before I give information to them. I need to have a clear clinical reason for doing so – and this isn’t “because it reduces pain” – it needs to have specific indications for this person. Understanding how and why “pain education” can be helpful is critical, and always remembering that knowing “about” something doesn’t mean it changes behaviour. I’m still not keen on spiders even though I know we have no poisonous ones here in Aotearoa, and I’m much bigger than them!

Katz, J., & Rosenbloom, B. N. (2015). The golden anniversary of Melzack and Wall’s gate control theory of pain: Celebrating 50 years of pain research and management. Pain Research & Management: The Journal of the Canadian Pain Society, 20(6), 285-286.

Hadjistavropoulos, T., Craig, K. D., Duck, S., Cano, A., Goubert, L., Jackson, P. L., Mogil, J. S., Rainville, P., Sullivan, M. J., de C. Williams, A. C., Vervoort, T., & Fitzgerald, T. D. (2011). A Biopsychosocial Formulation of Pain Communication. Psychological Bulletin, 137(6), 910-939. https://doi.org/10.1037/a0023876

Lackner, J. M., & Gurtman, M. B. (2004). Pain catastrophizing and interpersonal problems: a circumplex analysis of the communal coping model. Pain, 110(3), 597-604. https://doi.org/10.1016/j.pain.2004.04.011

McCracken, L. M., & Scott, W. (2022). Potential Misfortunes in ‘Making Sense’: A Cross-sectional Study in People with Chronic Pain. J Pain. https://doi.org/10.1016/j.jpain.2022.09.008

Moseley, G. L., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. Clinical Journal of Pain, 20(5), 324-330.

Zaman, J., Van Oudenhove, L., & Vlaeyen, J. W. S. (2021). Uncertainty in a context of pain: disliked but also more painful? Pain, 162(4), 995-998. https://doi.org/10.1097/j.pain.0000000000002106

Frustration in the clinic

I’m prompted to write this post because it’s something I see in social media so often – a clinician gets frustrated. Things don’t work. The person getting treatment doesn’t respond in the way that was expected. The person doesn’t look like what the clinician usually sees. The evidence doesn’t fit with practice. All the things! So I thought today I’d write about emotions and thoughts that might turn up – and what might underlie those feelings. (For people living with pain – we also have frustration in the clinic. Things don’t work out. The therapist isn’t what we expected. I’ll write more about this soon!)

Emotions are a complex reaction pattern, involving experiential, behavioral and physiological elements (https://dictionary.apa.org/emotion). From a cognitive behavioural perspective, an event happens, we appraise it (judge it), and we experience an emotion – then we do something as a response. It’s much more complex than this, and each part interacts with the others – so we end up with a big diagram looking something like this: (from – https://www.researchgate.net/figure/Cognitive-behavioral-therapy-model-of-depression_fig1_338695579).

Instead of “depressive”, just put in “beliefs/expectations about who I am and what I can expect from myself”. This is a pretty generic model in CBT, and is well-established even if there are plenty of arguments about accuracy and adequacy!

Clinicians generally want to help. Yes, some are in it for fame or fortune (choose something else, kthx), but on the whole people enter a clinical profession because they think they can do some good, and people will “get better.” Our communities hold long-standing expectations about what seeing a health professional should entail: read Benedetti’s “The Patient’s Brain” for a much more detailed description of the historical and evolutionary basis for a therapeutic encounter.

Why does this matter? Because it sets the scene for how we think a therapeutic encounter should go.

Rules and assumptions about what “ought” to, or “should” happen often underlie emotions.

We’re happy when all the things line up and the patient does what we expect of patients while the clinician does things that work. When things don’t go to plan (ie our expectations are violated) that’s when we get some feelings, and they can be pretty big.

What do we expect from patients?

Despite moves towards person-centred care where patients are seen as people and clinicians offer options rather than dictate orders, our societies still hold expectations about the roles a patient and a clinician should play.

Patients are expected to seek help when they’re sick. They’re expected to be truthful about their symptoms, and tell clinicians everything that is relevant about their condition – AND about any other aspect of their health, even if it’s not immediately relevant to their current problem. Symptoms experienced by patients are expected to be what the clinician expects, and the disease a patient has should fit within “typical” parameters (usually based on males). Patients are also expected to follow instructions, not do things that go against instructions, and of course, to get better. Patients are meant to be grateful for their treatment, even if it’s disruptive, has unpleasant side effects, or isn’t 100% effective. Patients should do their best all the time.

As a corollary, clinicians have a huge number of expectations they take on (and are given!). Some of us have these explicitly handed to us during our training, while others find they’re an implicit set of assumptions that we adopt, perhaps in the guise of “being professional.”

What do we expect from clinicians?

Clinicians expect to be in control in the clinical encounter. We’re expected to know what to ask about, and from this, what to test for. We’re expected to have the answers, and be right. We’re also expected to be calm, caring and focused – even when our personal lives are topsy-turvy. We’re meant to know what the patient wants, and how to give that to them. We’re also expected to be up-to-date, do no harm, change our practice according to evidence (even when that evidence is contradictory, or just emerging), and to stay interested in our work even if we’ve been doing it for years.

We’re expected to know our scope of practice, but practice using a broad “whole person” framework even if we were never trained to do this. We think we should be compassionate and caring, even if we were selected for training on the basis of our academic prowess and not on emotional literacy. We must take on responsibility for outcomes, even though we’re not there to “make sure” the patient “does what they’re told” in their own time. We assume when we tell someone to do something, they’ll drop everything in their life to do it – because their health should matter most, and even when other things in their life matter more.

Clinicians can be expected to practice independently from the moment they qualify, and are either “right” or “wrong” and never shades of in between. Clinicians expect that if something goes wrong, and the person doesn’t get better, it’s either the person’s fault (they didn’t do what they should have done), or the clinician has done something wrong and made a wrong diagnosis, or chosen the wrong treatment (or the treatment was right but the intensity was wrong…. so just do it again). And clinicians shouldn’t ask for emotional help because that means they’re “too emotionally invested” or “not distanced enough.”

Expectations suck

We all have them. And the ones I’ve listed above, while not always present, often underpin the way we expect clinical encounters to go. Many of them are implicit, so we don’t even realise we hold them – until BAM! Something goes wrong.

When expectations are violated, we feel emotions and some of these can be pretty strong. Many are less strong, just little niggles, little irritations, a bit of cynicism, some disappointment, some frustration. And they go both ways: people seeking help, and people trying to help. Over time, violated expectations feel like your head hitting against a brick wall, or swimming against the tide, or just plain demoralisation or even burnout.

Ways through them

Some of us have professionally-endorsed support systems to help us. Occupational therapists and psychologists have mandatory clinical supervision with someone who is there for you, who supports your development as a clinician, who challenges your assumptions, who pokes and prods at your reactions, who encourages taking a broader view. Individual clinicians in other professions may also pick up on using supervision in this way.

Some of us don’t have that kind of support. So we seek it elsewhere – I suppose, in part, I started writing this blog those years ago to “find my tribe.” Social media is one way we get affirmation, validation and even (sometimes!) great ideas to help us shift our approach.

Some clinicians leave their profession, do something else that’s more lucrative and less emotional effort. Some move out of practice and into academia. Some use “outside work” interests to blow off steam, or give emotional space.

Some of us are a little fused with the assumptions we hold. It’s hard to create a little space around those assumptions, because they’re held so tightly (or they’re so deeply buried). When we do get a tap on the shoulder suggesting our beliefs are out of whack it can feel so terribly humiliating, so inherently WRONG that we shut off, or bite back.

Creating “wiggle room”

Slowing down is a good way to begin creating some space to feel what is showing up when we’re feeling frustration. This could be by taking one or two minutes at the end of a session to be present. Yes, a little mindfulness to notice what is present in the body. To be OK with being aware of emotions, thoughts, and body sensations. NOT TO CHANGE THEM! To simply be with them. (An explanation here: https://www.youtube.com/watch?v=v9NkUomOO_w). This helps in many ways, but it does not (and isn’t intended to) reduce them. It helps you notice that you’re having feelings. It helps you pay attention to your own state of mind. It can create a moment to ask yourself “I wonder why I feel this way?” It can help you be more present with the next person you see because you’re not carrying those feelings into the next encounter.

Reflective practice is another way to create some space to be human, feel things, be curious about why they happen, and check in with your own values. A great resource that’s freely available is Positive Professional practice: a strength-based reflective practice teaching model – it might be a ‘teaching’ model, but clinicians teach All The Time!

Taking small steps, making small changes

The first step towards making a change is knowing that it’s needed. And the second is knowing that it’s possible. The third? Knowing what to do. I hope these suggestions help a little in this seldom-discussed aspect of practice. My own preference is to question WHY do we hold these expectations? WHO made them a thing? WHAT purpose do they serve? WHEN might those expectations be a good thing – and when might they not? WHERE can we nudge just a little to make change? And preferably, as clinicians, I think it’s OUR job to make the adjustments because we’re not ill or sore or seeking help.

Some references:

Dobkin, P. L., Bernardi, N. F., & Bagnis, C. I. (2016). Enhancing Clinicians’ Well-Being and Patient-Centered Care Through Mindfulness. Journal of Continuing Education in Health Professions, 36(1), 11-16. https://doi.org/10.1097/CEH.0000000000000021

Huft, J. (2022). The History and Future of the Sociology of Therapy: a Review and a Research Agenda. The American Sociologist, 53(3), 437-464. https://doi.org/10.1007/s12108-022-09534-3

McGarry, J., Aubeeluck, A., & De Oliveira, D. (2019). Evaluation of an evidence-based model of safeguarding clinical supervision within one healthcare organization in the United Kingdom. International Journal of Evidence-Based Healthcare, 17 Suppl 1, S29-S31. https://doi.org/10.1097/XEB.0000000000000180

Spencer, K. L. (2018). Transforming Patient Compliance Research in an Era of Biomedicalization. Journal of Health and Social Behavior, 59(2), 170-184. https://doi.org/10.1177/0022146518756860

“The social” – a brief look at family

Our most important relationships, the ones we learn most from, probably occur in families (Bowlby, 1978). As kids, even before we begin to speak, we observe our family members – and there’s reasonable evidence showing that how well these early relationships develop influences our experience of pain and how we express it.

I had the occasion to read a little about adolescent and children’s pain, and the influence of parents on young people as they grow up. There’s a great deal of research interest in children’s pain because children with persistent pain grow up to be adults – usually also with persistent pain. And good evidence that parents with persistent pain can, through mechanisms including depression and catastrophising, influence pain and disability in their children (Brown et al., 2022; Brown et al., 2021).

The research is fascinating. Some studies investigating predictors of chronic pain in children, some investigating disability – and a small number of studies looking at what we can do to help parents cope with the pain their children are experiencing. Not many studies (54 in a 2021 scoping review – see Lee et al., 2021). And sooooo many studies focusing exclusively, or close to, the influence of Mothers on children. Where’s Dad? Can I repeat that: where’s Dad?

More recent studies indicate the number of Fathers and Mothers – yay, we’re getting an idea of how many are recruited into these studies – and yet overwhelmingly, it’s Mothers who form the majority of participants. I wonder what effect having a Dad with chronic pain might have on a kid? And it’s only recently that oh darn animal models actually include females… it’s those pesky hormones dammit!

Turning to the next most important relationship, apart from parents, there’s a good deal of research looking at partners. Again, there exists a bias towards heterosexual couples, so we’re a little biased here. There is a wealth of material to review in this area of pain, with some brilliant research designs such as repeated interviews over 18 months, followed by 22 days of repeated daily measures (eg Martire et al., 2019); investigating people with pain problems as common as knee osteoarthritis and chronic low back pain; and examining relationships between things like sleep, caregiving burden, catastrophising, relationship satisfaction, agreement about pain intensity between partners, beliefs and perceptions about pain on interactions, anger, stress. HEAPS of fascinating research to delve into.

And yet, how many clinicians, and programmes, routinely include partners? How accessible are treatment sessions for couples to attend? Who, in a pain management team consisting of largely physiotherapy plus a dollop of psychology, looks after this aspect of living with persistent pain? Waaay back in the day, like the mid-2010s, the facility I worked in had a social worker with experience in family systems and relationships – but there are few social workers working in pain management in New Zealand/Aotearoa, and unless something has changed that I don’t know about, our national insurer doesn’t recognise the value of social workers (and, for that matter, the need to include partners in therapy for chronic pain).

When I review the many studies of this part of “the social” and compare the findings from these investigations against current clinical practice, I see an enormous knowledge and skill gap. If the questions we ask people with pain about their relationship are “how is your relationship with your partner?” we’re probably going to hear “oh they’re really supportive” or “I don’t let them know how I am”. Without adequate knowledge about the kinds of factors that negatively influence the partner’s response to the person with pain we’re likely to be oblivious to the risk of partner abuse (56% of people in this study reported past partner abuse, while 29% of the respondents had been abused in the previous year – Craner et al., 2020); we might not be aware that spouses with poor sleep because their partner was sore, were more likely to be angry (Marini, et al., 2020); that 52% of partners without pain reported high-to-severe burden of having to do more both at work and home because their partner was sore (Suso-Ribera et al., 2020) – or that if a spouse without pain did not have confidence in the pain management of their partner with pain, they were more negative (Nah et al., 2020) or that when a spouse without pain thought their partner’s pain “was a mystery” they were more critical and made more invalidating responses (Burns et al., 2019).

You see, while “the social” is complex, difficult to research, and very broad – ranging from employment status, occupation, educational status, ethnicity, culture, gender, sex – it also includes the very intimate and formative relationships we have with our family. In New Zealand/Aotearoa, with our emphasis on Te Whare Tapa Whā as a model of health and for chronic pain, where relationships with whanau are vital, isn’t it time we addressed this lack?

Bowlby, J. (1978). Attachment theory and its therapeutic implications. Adolescent Psychiatry, 6, 5-33.

Brown, D. T., Claus, B. B., Konning, A., & Wager, J. (2022, Mar). Unified multifactorial model of parental factors in community-based pediatric chronic pain. Journal of Pediatric Psychology, 47(2), 121-131. https://doi.org/doi: 10.1093/jpepsy/jsab085

Brown, D., Rosenthal, N., Konning, A., & Wager, J. (2021, Feb). Intergenerational transmission of chronic pain-related disability: The explanatory effects of depressive symptoms. Pain, 162(2), 653-662. https://doi.org/10.1097/j.pain.0000000000002066

Burns, J. W., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., Fras, A. M., & Keefe, F. J. (2019, Oct). Spouse and patient beliefs and perceptions about chronic pain: Effects on couple interactions and patient pain behavior. The Journal of Pain, 20(10), 1176-1186. https://doi.org/https://doi.org/10.1016/j.jpain.2019.04.001

Craner, J. R., Lake, E. S., Bancroft, K. E., & Hanson, K. M. (2020, Nov). Partner abuse among treatment-seeking individuals with chronic pain: Prevalence, characteristics, and association with pain-related outcomes. Pain Medicine, 21(11), 2789-2798. https://doi.org/10.1093/pm/pnaa126

Donnelly, T. J., Palermo, T. M., & Newton-John, T. R. O. (2020, Jul). Parent cognitive, behavioural, and affective factors and their relation to child pain and functioning in pediatric chronic pain: a systematic review and meta-analysis. Pain, 161(7), 1401-1419. https://doi.org/10.1097/j.pain.0000000000001833

Lee, S., Dick, B. D., Jordan, A., & McMurtry, C. (2021, Nov). Psychological interventions for parents of youth with chronic pain: A scoping review. The Clinical Journal of Pain, 37(11), 825-844. https://doi.org/10.1097/AJP.0000000000000977

Marini, C. M., Martire, L. M., Jones, D. R., Zhaoyang, R., & Buxton, O. M. (2020, Jun). Daily links between sleep and anger among spouses of chronic pain patients. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 75(5), 927-936. https://doi.org/10.1093/geronb/gby111

Martire, L. M., Zhaoyang, R., Marini, C. M., Nah, S., & Darnall, B. D. (2019). Daily and bidirectional linkages between pain catastrophizing and spouse responses. Pain, 160(12), 2841-2847. https://doi.org/10.1097/j.pain.0000000000001673

Meredith, P., Ownsworth, T., & Strong, J. (2008, Mar). A review of the evidence linking adult attachment theory and chronic pain: presenting a conceptual model. Clinical Psychology Review, 28(3), 407-429.

Nah, S., Martire, L. M., & Zhaoyang, R. (2020, Oct). Perceived patient pain and spousal caregivers’ negative affect: The moderating role of spouse confidence in patients’ pain management. Journal of Aging and Health, 32(9), 1282-1290. https://doi.org/10.1177/0898264320919631

Suso-Ribera, C., Yakobov, E., Carriere, J. S., & Garcia-Palacios, A. (2020, Oct). The impact of chronic pain on patients and spouses: Consequences on occupational status, distribution of household chores and care-giving burden. European Journal of Pain, 24(9), 1730-1740. https://doi.org/10.1002/ejp.1616

Biopsychological pain management is not enough

I recently read a preprint of an editorial for Pain, the IASP journal. It was written by Prof Michael Nicholas, and the title reads “The biopsychosocial model of pain 40 years on: time for a reappraisal?” The paper outlines when and how pain became conceptualised within a biopsychosocial framework by the pioneers of interprofessional pain management: John Loeser (1982) and Gordon Waddell (1984). Nicholas points out the arguments against a biopsychosocial model with some people considering that despite it being a “holistic” framework, it often gets applied in a biomedical and psychological way. In other words, that biomedical concerns are prioritised, with the psychosocial factors relegated to second place and only after the biomedical treatments have not helped. Still others separate the relationships between “bio” “psycho” and “social” such that the interdependent nature of these factors is not recognisable.

Nicholas declares, too:

“… that cognitive behavioural therapy interventions that did not also include workplace modifications or service coordination components were not effective in helping workers with mental health conditions in RTW. That means, just like in the case of reducing time lost at school for children in pain, the treatment providers for adults in pain for whom RTW is a goal should liaise closely with the workplace. Unfortunately, as the studies from the systematic reviews examined earlier for a range of common pain therapies indicated, engaging with the workplace as part of the treatment seems to be rarely attempted.“

I find this confusing. In 1999 I completed my MSc thesis looking at this very thing: pain management combined with a focus on using pain management approaches in the workplace. The programme was called “WorkAbilities” and included visits to the workplace, liaison with employers and even job seeking for those who didn’t have a job to return to. The confusion for me lies in the fact that I’ve been doing pain rehabilitation within the workplace since the mid-1980’s – and that while today’s approach for people funded by ACC is separated from pain management (more is the pity), there are many clinicians actively working in pain rehabilitation in the context of returning to work here in New Zealand.

I’m further puzzled by the complete lack of inclusion by Nicholas of occupational therapy’s contribution to “the social” aspects of learning to live well with pain. This, despite the many studies showing occupational therapists are intimately connected with social context: the things people do in their daily lives, with the people and environmental contexts in which they do them. You see, occupational therapists do this routinely. We work with the person in their own environment and this includes home, work, leisure.

For those that remain unaware of what occupational therapists offer people with pain, I put it like this: Occupational therapists provide contextualised therapy, our work is in knowledge translation or generalising the things people learn in gyms, and in clinics, and helping people do these things in their life, their way.

An example might help.

Joe (not his real name) had a sore back, he’d had it for about three months and was seeing a physiotherapist and a psychologist funded by ACC (NZ’s national insurer). Not much was changing. He remained fearful of moving especially in his workplace where he was a heavy diesel mechanic and was under pressure from a newly promoted workshop manager to get things done quickly. Joe was sore and cranky, didn’t sleep well, and his partner was getting fed up. Joe’s problems were:

• guarding his lower back when moving
• fear he would further hurt his back if he lifted heavy things, or worked in a bent-over position, or the usual awkward positions diesel mechanics adopt
• avoiding said movements and positions, or doing them with gritted teeth and a lot of guarding
• poor sleep despite the sleep hygiene his psychologist had prescribed
• irritability
• thoroughly enjoying the gym-based exercise programme
• hating mindfulness and any of the CBT-based strategies the psychologist was offering him, because as he put it “I never did homework when I went to school, do you think I’m going to do it now? and this mindfulness thing doesn’t work!”

The occupational therapist visited Joe at home. She went through his daily routine and noticed that he didn’t spend any time on “fun” things or with his mates. His intimacy with his partner was scant because the medications he was on were making it hard for him to even get an erection, and his partner was scared he’d be hurt when they made love. Besides, she was fed up with all the time he had to spend going in to the gym after work when he wasn’t doing simple things around home, like mowing lawns, or helping with grocery shopping.

She went into his workplace and found it was a small four-person operation, with one workshop manager, two mechanics and one apprentice. The workshop was a health and safety hazard, messy and cramped, and open to the weather. The relationships between the team were strained with unpleasant digs at his failure to keep up the pace. The workshop manager said that he’d do his best to help Joe out – but in the end he needed to get the work out on time. The other mechanic, an old hand, meanwhile was telling Joe to suck it up and be a man, but also to watch out because Joe shouldn’t do as he’d done and shagged his back.

What did our erstwhile occupational therapist do? Absolutely nothing new that the physiotherapist and psychologist hadn’t taught Joe – but she worked out when, where and how Joe could USE the strategies they’d discussed in his life contexts. She went through the way he moved in the workshop and guided him to relax a little and find some new movement patterns to be able to do his work. She graded the challenges for him, and stayed with him as he experimented. She discussed alternating the tasks he did, interspersing tasks that involved bending forward with those where he could stand upright or even work above his head (in the pit). She discussed how he could use being fully present at various times during the day (mindfulness) to check in with his body and go for a brisk walk if he felt himself tensing up. She worked through communication strategies that they rehearsed and he implemented to let his manager know what he could – and could not – do.

They discussed his home life, and ways he could begin doing some of the household tasks he’d been avoiding, and she showed him how to go about this. They worked out the best time of day to do this – and to vary the exercise he did so that it wasn’t all about the gym. He started to walk over rough ground to get more confident for when he went fishing again, and he got himself a little stool to sit on from time to time. Joe and his occupational therapist talked about his relationship with his partner, and they met together with her so they could share what his back pain meant, the restrictions he had, what he could do, and how else they could be intimate. Joe was encouraged to rehearse and then tell his doctor about the effect of his meds on his sex life.

The minutiae of daily life, translating what is learned in a clinic to that person’s own world is, and always has been, the province of occupational therapy. It’s just a little sad that such a prominent researcher and author hasn’t included any of this in this editorial.

Just a small sample of research in which occupational therapists are involved in RTW.

Bardo, J., Asiello, J., & Sleight, A. (2022). Supporting Health for the Long Haul: a literature synthesis and proposed occupational therapy self-management virtual group intervention for return-to-work. World Federation of Occupational Therapists Bulletin, 1-10.

Berglund, E., Anderzén, I., Andersén, Å., Carlsson, L., Gustavsson, C., Wallman, T., & Lytsy, P. (2018). Multidisciplinary intervention and acceptance and commitment therapy for return-to-work and increased employability among patients with mental illness and/or chronic pain: a randomized controlled trial. International journal of environmental research and public health, 15(11), 2424.

Cullen K, Irvin E, Collie A, Clay F, Gensby U, Jennings P, Hogg-Johnson S, Kristman V, Laberge M, McKenzie D. Effectiveness of workplace interventions in return-to-work for musculoskeletal, pain-related and mental health conditions: an update of the evidence and messages for practitioners. J Occup Rehabil 2018;28:1–15.

Grant, M., Rees, S., Underwood, M. et al. Obstacles to returning to work with chronic pain: in-depth interviews with people who are off work due to chronic pain and employers. BMC Musculoskelet Disord 20, 486 (2019). https://doi.org/10.1186/s12891-019-2877-5

Fischer, M. R., Persson, E. B., Stålnacke, B. M., Schult, M. L., & Löfgren, M. (2019). Return to work after interdisciplinary pain rehabilitation: one-and two-year follow-up study based on the swedish quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 51(4), 281-289.

Fischer, M. R., Schults, M. L., Stålnacke, B. M., Ekholm, J., Persson, E. B., & Löfgren, M. (2020). Variability in patient characteristics and service provision of interdisciplinary pain rehabilitation: A study using? the Swedish national quality registry for pain rehabilitation. Journal of Rehabilitation Medicine, 52(11), 1-10.

Ibrahim, M.E., Weber, K., Courvoisier, D.S. et al. Recovering the capability to work among patients with chronic low Back pain after a four-week, multidisciplinary biopsychosocial rehabilitation program: 18-month follow-up study. BMC Musculoskelet Disord 20, 439 (2019). https://doi.org/10.1186/s12891-019-2831-6

Marom, B. S., Ratzon, N. Z., Carel, R. S., & Sharabi, M. (2019). Return-to-work barriers among manual workers after hand injuries: 1-year follow-up cohort study. Archives of physical medicine and rehabilitation, 100(3), 422-432.

Michel, C., Guêné, V., Michon, E., Roquelaure, Y., & Petit, A. (2018). Return to work after rehabilitation in chronic low back pain workers. Does the interprofessional collaboration work?. Journal of Interprofessional Care, 32(4), 521-524

Nicholas, M.K. (in press). The biopsychosocial model of pain 40 years on: time for a reappraisal? Pain.

The added stress of chronic pain on life

For a minute, I’d like you to grab an ice-cube. If you don’t have one handy, try this at home or when you’re having your next gin and tonic. Hold onto that ice-cube. Keep holding onto it. Put a cloth underneath if it’s going to melt, but keep holding it. Now do your grocery shopping list. Or balance your accounts. While holding the ice-cube.*

Now add some exercises. Exercises you don’t care for, but feel like you have to do “because they’ll help you get better”.

Keep holding onto the ice-cube. Oh, it’s melted?! Fine – go grab another. Hand too cold to pick on up? Never mind, go find one and just do it. And keep doing the grocery shopping list. And the exercises.

Add in a night of not sleeping. Make that a week of not sleeping.

Add in having a new medication to take every day at night at the same time. The medication makes your mouth dry, constipates you, and you can’t wake up because it makes you feel sluggish.

Keep holding the ice-cube.

Phone your employer to say you’ll be in, but a therapist is going to visit you at work to see what you can do. Hold onto the ice-cube. The employer says OK but when are you coming back to work full time? I need you, or I’ll have to get someone else in.

Grab another ice-cube, keep holding it. Hand getting numb and sore? OK, therapy will help that! Here’s some mindfulness to do. And breathe…. and don’t forget the exercises. And that other appointment with a case manager to sign your rehabilitation plan. And do the groceries while you’re there. Keep holding that ice-cube.

And don’t be like that! Don’t get snippy with the kids, just pull yourself together! Hold onto the ice-cube. Lie awake worrying about work and how you’ll balance the accounts. Forget to take the medications, feel terrible – all sweaty and nauseous. Turn up to the employer with the therapist in tow. Hold on to the ice-cube.

The therapist says you can’t do this, or that, and you need to break your work up into chunks like this, and here’s a gadget that might help. Your employer rolls his eyes at you behind the back of the therapist. Keep holding that ice-cube.

Case manager phones saying she’s very sorry, but the paperwork for your weekly compensation hasn’t been filled out properly, you’ll have to go to the doctor to get another certificate, talk to your employer and have you done your exercises yet? Do you need to see a psychologist? Hold onto the ice-cube.

Your partner, who has been magnificent up until now, loses the plot when he gets home today. Hold onto the ice-cube, don’t let it drop. Feel that pain. Breathe. Do exercises. Take meds. Worry about job. Worry about relationship – partner comes to bed but turns the other way. Realise you missed getting a warrant of fitness for the car, think about putting that on the list for tomorrow.

…and someone said people on compensation for pain are just “non-copers”

Cry.

If you’re a therapist, remember what you ask a person to do is only one thing in a vast, unfamiliar and confusing sea of things to do. All the while holding on to an ice-cube that’s burning into your hand….

*Try this at home so you can experience what it might be like to have pain that’s present, intense, and gets in the way of life. BTW it’s not a treatment for chronic pain!!

The demise of practical pain management

Cast your mind back to the last time you decided to create a new habit. It might have been to eat more healthy food, to do daily mindfulness, to go for a walk each day. Something you chose, something you decided when, where and how you did it, something that you thought would be a great addition to your routine.

How did it go? How long did it take to become a habit you didn’t need to deliberately think about? How did you organise the rest of your life to create room for this new habit? What did other people say about you doing this?

While we all know a reasonable amount about motivation for change – importance and confidence being the two major drivers – and as clinicians most of us are in the business of helping people to make changes that we hope will become habitual, have you ever stopped to think about what we ask people with pain to do?

It’s not just “do some exercise”, it’s often “and some mindfulness”, and “you could probably eat more healthily”, and “organise your activities so you can pace them out” – and “take these medications at this and this time”, “attend these appointments”, “think about things differently”… the list continues.

Now, for a moment, cast your mind back to the last few research papers you read, maybe even a textbook of pain management, the most recent course you went on, the latest CPD.

Was there anything at all on how people with pain integrate all of these things into their life?

Lewis et al., (2019) reviewed inpatient pain management programmes over 5 decades. They found 104 studies spanning from 1970’s to 2010’s. Unsurprisingly the content, format and clinicians involved in these programmes has changed – but you might be surprised at some other changes… Lewis and colleagues found that physiotherapy (primarily exercise) remained at similar levels over time, but programmes gradually became less operant conditioning-based (ie behavioural reinforcement with a focus on changing behaviour) to become more cognitive behavioural (working with thoughts and beliefs, often without necessarily including real world behaviour change), with reduced emphasis on reducing medications and less family involvement. While the same numbers of physiotherapists, doctors and psychologists remain, nurses and occupational therapists are decreasingly involved.

What’s the problem with this? Isn’t this what the research tells us is “evidence-based”?

Let’s think for a moment about effect sizes in chronic pain. They’re small across all modalities when we look at outcomes across a group. There are some gaps in our understanding of what, and how, pain management programmes “work”. We know that movement is a good thing – but effect sizes are small. We don’t know how many people maintain their exercise programmes even six months after discharge. We also don’t know how well movements taught in a clinic transfer into daily life contexts, especially where fear and avoidance are being targeted. We don’t know who, if anyone, carries on using mindfulness, cognitive strategies such as thought reframing or reality testing, and we don’t know many people leave a programme thinking they’ve been told their pain is “in their head” (though, to be fair, this is something we’ve had problems with for at least the 30 years I’ve been doing this work!).

So while assessment might be more “holistic” and outcomes more likely to be about quality of life and disability, the minutiae of how people with persistent pain integrate and synthesise what they learn in pain management programmes into their own life contexts is invisible. It’s not even part of many pain management programmes.

We could turn to the qualitative literature for some insights. Mathias et al., (2014) interviewed people two weeks after completing a programme. Munday et al., (2021) selected people toward the end of a three week programme. Farr et al., (2021) talked to people up to 24 months after a programme – but in the context of a peer-led support group (which, by the way, I think are marvellous!), Penney et al., (2019) interviewed veterans to identify outcomes, barriers and facilitators to ongoing pain management – but don’t indicate how long after a programme their participants were interviewed. So we don’t know what pain management strategies “stick” and remain in use, integrated into daily life.

So many questions come up for me! Do pain questionnaires measure what matters to people? Can a 0 – 10 response on an item of the Pain Self Efficacy Questionnaire (Nicholas, 2007) represent how someone draws on, and uses, coping strategies to do what matters? Does a response on the 0 – 10 Pain Disability Index (Tait, Chibnall & Krause, 1990) adequately capture how a person does their daily life? If we help people “do exercise” but they don’t continue with these exercises once they resume their own life – what is the point? Why are family members not included any more? How does this fit with New Zealand’s Te Whare Tapa Whā model of health?

The problem/s?

The health profession that entirely focuses on helping people do what matters in their life (occupational therapists use occupation or daily doing as both therapy and outcome) has had trouble describing our contribution. We don’t, as a profession, fit well into a medical model of health. We focus almost exclusively on the “Function” and “Participation” parts of the ICF – and we focus on daily life contexts. Researching our contribution using RCTs is difficult because we offer unique solutions that help this person and their whanau in their own context, and no-one’s daily life looks the same as another’s. We are about meaning, expressing individuality and self concept through the way we do our lives. This doesn’t lend itself to a clinic-based practice, or a hospital, or a standardised treatment, or treatment algorithms. Our contribution has been eroded over time. Very few pain management programmes incorporate occupational therapy – most are physiotherapy + psychology. This is especially noticeable in NZs ACC community pain management programmes.

Pain management is often based on the assumption that if a person is told what to do, perhaps gets to do it in a clinic with a therapist, this is sufficient. And for some people, especially those who view themselves in the same way as therapists (ie, individual responsibility), and people with the psychological flexibility and internal resources to just do it, they may do quite well. BUT consider the people we know who don’t. People from different cultures, lower socio-economic living, neurodiverse, those with competing values, lack of confidence, lack of personal agency – these are the people who don’t do as well in all of our healthcare, and especially those programmes relying on “self-management”.

Programmes also assume that what is done in a clinic can readily transfer to daily life. Clinics are contained, often purpose-built, usually regulated, and have a therapist handy. People are there for the one purpose. Daily life, on the other hand, is highly variable, holds multiple competing demands, other people question what you’re doing and why, is quite chaotic and messy. And there is no therapist. How does a person decide what to do, when, how, and why?

Remember your challenges with developing one new habit. How you had to stake a claim in your own life to create space for this new activity. How you sometimes forgot. How a change in one part of your life undermined you doing this new thing. How this was only one change. Only one. And what do we ask people with pain to do? And we don’t even bother to find out what is still being done 12 months down the track.

Practical pain management is about helping someone work out how to organise their week so they can add in this new exercise programme that might help, alongside having time and energy to be a good Mum, pick the kids up from school, sort the washing, do the groceries, oh and the car needs a new warrant, and I need a new prescription for my meds.

It’s about working out the best time of day to do some mindfulness – when will it do the most good? when can I fit it in? how do I deal with my partner wanting to get out and start the day while I’m meditating?

It’s about communicating to my boss, my colleagues and my customers that I need to get up and walk around – and maybe say no to some new projects at the moment. Perhaps I need to be more assertive about my own needs. Perhaps I’m worried I’ll lose my job because I need to make these changes….

In the rush to streamline pain management to the bare bones, I wonder if we have forgotten who it is all about. He tangata, he tangata, he tangata – it is people, it is people, it is people. Let’s remember that coping strategies and exercise and all the psychological approaches need to be continued for months, and even years. And this means helping people work out what our suggestions look like in their own life. Let’s not omit the profession that puts people and what their daily life looks like as its reason for being.

Tait, R. C., Chibnall, J. T., & Krause, S. (1990). The pain disability index: psychometric properties. Pain, 40(2), 171-182.

Farr, M., Brant, H., Patel, R., Linton, M. J., Ambler, N., Vyas, S., Wedge, H., Watkins, S., & Horwood, J. (2021, Dec 11). Experiences of Patient-Led Chronic Pain Peer Support Groups After Pain Management Programs: A Qualitative Study. Pain Medicine, 22(12), 2884-2895. https://doi.org/10.1093/pm/pnab189

Lewis, G. N., Bean, D., & Mowat, R. (2019, Sep). How Have Chronic Pain Management Programs Progressed? A Mapping Review. Pain Practice, 19(7), 767-784. https://doi.org/10.1111/papr.12805

Mathias, B., Parry-Jones, B., & Huws, J. C. (2014). Individual experiences of an acceptance-based pain management programme: An interpretative phenomenological analysis. Psychology & Health, 29(3), 279-296. https://doi.org/10.1080/08870446.2013.845667

Nicholas, M. K. (2007, Feb). The pain self-efficacy questionnaire: Taking pain into account. European Journal of Pain, 11(2), 153-163. https://doi.org/http://dx.doi.org/10.1016/j.ejpain.2005.12.008

Penney, L. S., & Haro, E. (2019). Qualitative evaluation of an interdisciplinary chronic pain intervention: outcomes and barriers and facilitators to ongoing pain management. Journal of Pain Research, 12, 865-878. https://doi.org/10.2147/JPR.S185652

The complex world of identifying nociplastic pains

Towards the end of 2017, IASP put forward a new mechanistic classification: nociplastic pain. The definition is: “Pain that arises from altered nociception despite no clear evidence of actual or threatened tissue damage causing the activation of peripheral nociceptors or evidence for disease or lesion of the somatosensory system causing the pain.

Note: Patients can have a combination of nociceptive and nociplastic pain”.

This was great news! Prior to this, the term “central sensitisation” was used and abused to describe processes involved in ongoing pain that wasn’t inflammatory or neuropathic. Problem with that term is that it’s apparent in nociceptive mechanisms, as well as both inflammatory and neuropathic…. When the way people used the term was more akin to “well, the pain hasn’t settled down, so ‘something weird’ is going on and it must be in the central nervous system so we’ll adopt this term seeing as Clifford Woolf described it in the spinal cord” (Woolf, 1996, 2007).

In other words, any pain that seemed to radiate, hang around, and no respond to treatment was “centrally sensitised”. Perhaps so. Perhaps not. Suffice to say, people got confused because most of the typical central sensitisation from nociceptive/inflammatory processes subsides over time, but these “centrally sensitised” pains did not.

I, for one, am glad there’s a group in which weird pains that don’t appear to involve typical nociceptive, inflammatory or neuropathic mechanisms can be put.

Problem is: how do we know what fits into this group? We can be pretty certain when it comes to neuropathic pain, because the definition is very clear (though not so clear in the clinic) – “Pain caused by a lesion or disease of the somatosensory nervous system.” The notes go on to say that “neuropathic pain is a description, not a diagnosis” and I’d say the same about nociplastic pains (which is why I use the plural…). I also step out to say that I don’t think ALL nociplastic pains will be found to have the same biological mechanisms, especially given how widely variable neuropathic pains are.

Nevertheless, we need some way to decide which pains are in, and which are out of this group.

This table comes from Kosek et al., (2021) and summarises the findings from a consensus process within an expert group. They make the point that acute pain isn’t helpfully included in this group, and instead it should be used for pains that persist for 3 months or longer. They also point out that regional pain is included while discrete pain is typically not because of the central sensitisation processes involved (note: this is the correct use of the term! Confused? CS is a neurophysiological phenomenon, associated with more than nociplastic pain).

Looking at the above criteria, possible nociplastic pain is present if the person has criteria 1, and criteria 4. Probable nociplastic is present if the person has all the above.

There are some notes, of course: regional means the musculoskeletal pain is deep, regional or in several places or even widespread (not localised to one place), and each condition eg frozen shoulder and OA knee needs to be assessed separately. If there is an identifiable nociceptive source (or neuropathic source) then the pain needs to be more widespread than “usual” for that pathology. Finally, because nociplastic pain unlike neuropathic pain, has no definitive test currently, there is no “definite nociplastic” category – but once there is, this will be added.

What does this mean for us as clinicians?

Firstly it ought to stop people being thought as faking, malingering or otherwise not being believed. That should be a given but unsurprisingly because of legal and health systems and our own frustration at not being able to “fix” people, people with pain get that impression more often than they should. It also ought to stop psychopathologising people who have this kind of pain: we can’t distinguish between people with nociplastic pain and the DSM5 “Somatic Disorder” – so let’s just not add another unhelpful mental health label to what is already a stigmatised situation.

Then it ought to stop clinicians using treatments that simply don’t help – such as opioids for fibromyalgia. It might help clinicians pause before prescribing movement therapies at a level that is too intense for the person, because this only revs the nervous system up even more making the whole process unpleasant. Beginning at the level the person can manage and gradually increasing is crucial to success. And it ought to stop clinicians from administering “explanations” or “education” and expecting that alone to reduce pain. Because while cortical processes are part and parcel of every pain there is, it’s in this group of pains that some people think “top down” by thinking yourself out of pain is a thing. FWIW pain reduction is lovely and part of treatment, but shouldn’t ever be the only outcome (Ballantyne, 2015), and many times in this group of pains, may not even be an outcome.

Finally, it should stimulate helpful discussion about what “whole person” approaches to managing these pains looks like. The authors say “patients with nociplastic pain are likely to respond better to centrally than peripherally targeted therapies” and this does not mean talk therapy alone, or exercise alone, or indeed medications such as gabapentin or nortriptyline alone. To me, it means individualised, tailored, and integrated strategies to moving, managing daily life, restoring sleep, enjoying an intimate relationship, managing mood and memory, and these might best be offered by pain coaches rather than siloed “therapies” of physical, psychological or whatever other stripe there is.

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

Kosek, E., Clauw, D., Nijs, J., Baron, R., Gilron, I., Harris, R. E., Mico, J.-A., Rice, A. S. C., & Sterling, M. (2021). Chronic nociplastic pain affecting the musculoskeletal system: clinical criteria and grading system. Pain, 162(11), 2629-2634. https://doi.org/10.1097/j.pain.0000000000002324

Woolf, C. J. (1996). Windup and central sensitization are not equivalent. Pain, 66(2), 105-108.

Woolf, C. J. (2007). Central sensitization: uncovering the relation between pain and plasticity. The Journal of the American Society of Anesthesiologists, 106(4), 864-867.

Women, partner violence and pain

As the potential for greater repression of women’s autonomy grows (Afghanistan, United States, Mexico), along with racist and misogynist statements from business leaders (DGL CEO Simon Henry) it’s timely to look at pain in women. We already know that more women than men present with persistent pain (Blyth, n.d.), while women who are seen for their pain are more often misdiagnosed, offered psychiatric medication or psychological intervention only and have their experiences dismissed as “hysterical, fabricated, or nonexistent” (Samulowitz, et al., 2018). My daughter, when attending Emergency Department was offered a paracetamol and told “there’s no cure for being a woman” when seeking help for an ovarian cyst. Period pain is considered “normal” (Drabble et al., 2021). Pain in women is not a sexy topic.

Intimate partner violence is common among women. 27% of women who have had a partner report violence perpetrated against them. 24% of young women aged between 15 – 19 years report violence. Low-income countries reporting higher levels of intimate partner violence, and while data was not available for the past two years of covid-19 disruption, it’s expected that higher levels of violence are probable (Sardinha et al., 2022).

What about the intersection between partner violence and persistent pain? (BTW violence is defined as emotional, physical, or sexual harm experienced in a current or former intimate relationship and includes stalking, psychological aggression such as coercion, as well as physical and sexual violence).

Persistent pain is one of the most commonly reported health consequences of intimate partner violence (Walker, 2022), and women are more likely to be the recipients of partner abuse than men. Yet – open conversations about violence and persistent pain in women, recognising the signs and symptoms of partner violence in people seeking help for persistent pain, and adequate approaches to treatment are rare. Women may not disclose their situation for fear of being stigmatised, labelled unfairly, or having their pain – and their situation – trivialised.

Walker and colleagues (2022) carried out a systematic review of studies exploring the types of pain women experienced in association with partner violence, the severity of that pain, and the impact of pain on the person. They found that while pelvic pain was common amongst women who had been sexually abused, women also reported chest pain, back pain, neck pain, arthritis, and stiffness in joint or muscles, more frequent headaches, and more back pain – furthermore, women who had experienced partner violence reports higher pain severity, with 75% of women indicating moderate to severe pain, and the longer a women had been in an abusive relationship, the more likely they were to report higher intensity pain.

Interestingly, disability from persistent pain wasn’t measured often – only two studies from 12 included in the final review – but women with persistent pain from partner violence reported higher pain-related disability. They also reported worse impact on their mental health – more PTSD, anxiety and depression, with depression being one of the key mediator between a history of partner violence and ongoing pain.

The authors of this study (Walker et al., 2022) point out that it’s likely that women who have sustained partner violence and experience persistent pain are “not being adequately identified and responded to in clinical settings” – and that the fear of not being believed and the stigma of being on the receiving end of partner violence likely limits how many women openly discuss their situation.

Isn’t it time to get women’s pain prioritised? To get political about systems and processes that fail women? Isn’t it time to shift the narrative around women’s menstrual pain? To acknowledge that women are not mini men?

Finally, when we consider pain rehabilitation, we need to not only recognise that women have different priorities and goals for their lives than men, we also need to understand that doing rehabilitation is more complex for women than men – women report more difficulty prioritising their own rehabilitation over other responsibilities in their life (Côté & Coutu, 2010). Women may not even be referred for rehabilitation as often as men (Stålnacke et al., 2015). It’s time to prioritise understanding the lived experience of women as they pursue help for their persistent pain – and then do something different.

Blyth, F. (n.d.). Chronic pain in Australia: A prevalence study. Retrieved May 12, 2019, from http://www.ncbi.nlm.nih.gov/ pubmed/11166468

Daniel Côté & Marie-France Coutu(2010)A critical review of gender issues in understanding prolonged disability related to musculoskeletal pain: how are they relevant to rehabilitation?,Disability and Rehabilitation,32:2,87-102,DOI: 10.3109/09638280903026572

Drabble, S. J., Long, J., Alele, B., & O’Cathain, A. (2021). Constellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain. British Journal of Pain, 15(3), 345-356.

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A theory-guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Research & Management, 2018. https://doi.org/10.1155/2018/6358624

Sardinha, L., Maheu-Giroux, M., Stöckl, H., Meyer, S. R., & García-Moreno, C. (2022). Global, regional, and national prevalence estimates of physical or sexual, or both, intimate partner violence against women in 2018. The Lancet, 399(10327), 803-813.

Stålnacke, B., Haukenes, I., Lehti, A., Wiklund, A., Wiklund, M. et al. (2015)
Is there a gender bias in recommendations for further rehabilitation in primary care of patients
with chronic pain after an interdisciplinary team assessment?.
Journal of Rehabilitation Medicine, 47(4): 365-371
http://dx.doi.org/10.2340/16501977-1936

Walker, N., Beek, K., Chen, H., Shang, J., Stevenson, S., Williams, K., Herzog, H., Ahmed, J., & Cullen, P. (2022). The Experiences of Persistent Pain Among Women With a History of Intimate Partner Violence: A Systematic Review. Trauma Violence Abuse, 23(2), 490-505. https://doi.org/10.1177/1524838020957989