When life happens….

Most of my writing comes from mulling over recent events as played out either in social media or research findings. Today’s post is a little different. It’s no secret that I live with persistent pain, fibromyalgia to be exact. I’ve found that being open about my diagnosis, and that all the strategies I advise to others are also strategies I employ, and that none of them are ‘the secret.’

I posted recently about a struggle I have dealing with reviewer’s comments on papers I submit for publication. Now peer review is a thing, I think it’s a good thing though somewhat exploitative (I’m also a reviewer – we do it for free, we do it as part of our academic ‘service to the research community’ but we do it for large publication companies that receive articles for free from researchers who utterly rely on getting published for their grant applications, careers…). My struggle isn’t with unfair or unkind reviewers because to be fair I’ve had really good reviewer comments.

My trouble is associated with two peculiarities of mine. I get horribly, horribly anxious when I read reviewer comments, and largely I’ve learned to deal with that. I understand that the aim is to get the best version of what I’ve written out there into print, and as I’ve said, reviewers have generally been fair. Uninformed in some cases (no, Classical grounded theory is NOT the same as Strauss & Corbin, or Charmaz! CGT holds different philosophical assumptions, and in qualitative research, philosophy of science matters), but readily rebutted. Nevertheless I feel highly anxious and worry that I won’t be able to address the reviewer’s concerns adequately. That old imposter syndrome is alive and well in this woman!

The second peculiarity is one I’ve only just got a handle on, though the effects have been with me forever. You see, about 12 months ago I was diagnosed ADHD.

Yes. At 58 years old, I got a new diagnosis that helps explain some of the things that I’ve had trouble with my whole life.

Time for a quick segue. Diagnoses are an odd phenomenon, particularly when it comes to intangible concepts like emotions and cognitions. Unlike acquired diseases, there don’t seem to be readily identified biomarkers – because, of course, unless it’s viewable it’s not real (yeah, right). In other words, we have to rely on what a person says and does to determine whether they have the right to a certain label. And labels in ‘mental health’ are notoriously unreliable, shift with changing political and societal norms (how long ago was homosexuality removed from being thought a mental illness? 1973…). People like Steven Hayes have argued that the entire notion of diagnostic criteria in DSMV is flawed (Hayes, Sanford & Feeney, 2015). Diagnoses for most mental health problems have not led to effective treatments that target the purported mechanisms involved (Hayes, et al., 2022). What diagnoses may do is allow social permission to receive certain considerations. For example, someone with an accident-related pain problem in New Zealand will be able to access free therapy from a multidisciplinary team, while someone with a non-accident-related pain problem such as hand osteoarthritis, or migraine, will have to rely on the scant publicly funded chronic pain services. Diagnoses matter, as anyone in NZ who has been told their pain is ‘not injury-related’ will tell you.

ADHD is not, let’s be quite clear, only reserved for children (particularly boys) with a tendency to leap around a classroom making noise and generally being disruptive. ADHD is a neurotype experienced by around 2.5 – 5% of adults (Young, et al., 2020) and typically considered under-diagnosed in girls and women precisely because of the stereotypical understanding of ADHD. It’s at least partly heritable (some estimates are about 70 – 80%, with 12 independent genomic loci that increase susceptibility to ADHD), generally responds well to stimulant medication (though this does in NO WAY ameliorate all the problems associated with ADHD), and can be found in people from all walks of life and all levels of intelligence.

ADHD describes lifelong patterns of difficulty regulating attention, emotions, and behaviour. There are three major groups of problem: inattention, hyperactivity, and impulsivity (Australian evidence-based clinical practice guideline, 2022). Different people experience different problems associated with ADHD. Mine include atrocious organisational skills, but great responsiveness in high pressure situations; a terrible short-term memory but great visual recall; lousy object constancy (if I can’t see it, it just doesn’t exist); overwhelm in busy sensory environments but exceptional capacity for laser-focused attention on what interests me – to the exclusion of remembering to eat, drink or pee.

People with ADHD often feel out of kilter with others in the world. We might get told we’re weird, or lack social skills, or we ‘have potential’ if only we’d learn how to harness it. Women in particular are often treated for depression and anxiety without anyone asking how it is we’ve developed these issues. We’re great on social club quiz evenings because we have immense recall for utter trivia, but we routinely have to return to the house four or more times to pick up our phone, lock the doors, fetch our glasses and our handbag.

How does it affect me and my writing?

Well, ADHD means I’m fascinated by novelty. Dopamine is the ‘molecule of more’ – and drives me to dive down rabbit holes to find stuff out. Once I’ve found something out, I like to cement my knowledge by writing or talking about it. It makes me a good teacher though sometimes I info-dump way more than anyone else wants to know! Being novelty-driven also means I write fast, as I speak, and once I’ve written something – it’s done. That novelty buzz evaporates and it’s like a switch in my mind flicks off and boom! I’m on to the next thing.

When I get reviewer comments on my work, a big part of me thinks “oh but didn’t you get it? I’ve written it, can’t you see?” because I’ve forgotten about the background information I hold that the reader probably doesn’t also hold. Another big part of me thinks “but I organised this to tell a story this way, now I don’t know how to change that” because I find holding on to multiple points really difficult, and structuring a cogent response to reviewers means not only remembering what I wanted to say, but also what the reviewers found – and my response to their comments. That’s a lot of cognitive shuffling, to say the least, especially when one of the problems my ADHD brings is holding onto information in memory then selecting the right response at the right time.

Once I start thinking about these multiple perspectives and which bit is most important I begin to get anxious. My anxiety is about choosing a response that says what I want to say and aligns with the reviewers ideas. What if I get it wrong? What if I can’t sift through the various points and decide what needs to change? All the overload hits my poor mind, and I freeze.

Part of this is because I was diagnosed later in life and I’ve experienced a lot, and I mean a LOT, of negative feedback about focusing on the wrong things. Doing it wrong. Being wrong. Working really hard on something that ultimately didn’t count for much where it matters. And academic life is full of negative, even brutal, feedback. I mean, we debate ideas with vigour! A good part of me thrives on intellectual debate in the moment. In the quiet of a late night… not so much. It’s overwhelming.

Another part is that ADHD means I see relationships between things that might not occur to others. It’s a big quirk of ADHD – as a group of individuals, we’re often ‘the creatives’, seeing connections and solving unique problems in ways that aren’t logical. That’s because our minds see connections quickly, and linear logic is not often our friend because… well it’s boring and linear. Free association is where my mind lives! Hunches, intuition, improvising, mix’n’match… Precisely because of this, when a new piece of information hits, it disrupts what I’ve already assembled, and for me it’s not just about altering this one part, that single change ripples throughout the whole network of associations I’ve made. Where oh where do I start?

As an older woman learning that yes, I do in fact have an explanation for the difficulties I’ve faced throughout my whole life, has meant an enormous shift in my own self-compassion. When I consider what I’ve achieved despite my ADHD, as a single parent with two ADHD children (undiagnosed until 2 years ago), while working full time, studying part-time, and generally maintaining a good long-term relationship and long-term employment, I’m a little astonished. And at the same time… afraid that really, I am ‘not achieving my potential’, ‘could try harder’, ‘has the capability if she’d only be more consistent.’

Why reveal this in a blog about pain self management?

A couple of reasons. Firstly, it’s my blog, so I can write what I want!! And writing a blog for as long as I have demonstrates that yes, I can certainly be consistent in some circumstances. The context of my consistency matters, because it’s something that I can use to support my neurotype, my ADHD traits.

Secondly, because while I’m now diagnosed and treated and experiencing the incredible benefits of a successful therapy (what? my mind can be quiet? I can focus? I can make choices instead of reacting? OMG it’s awesome!), I still need to deal with both my quirky executive function AND the experiences of a lifetime of dealing with it and the responses from the world around me. Nearly 59 years of consistently stuffing things up, double-booking myself, forgetting details, getting overwhelmed and stuck, not being able to sort my way through a complex situation, being criticised for exactly the sorts of things my brain does well. Things like seeing connections between things that appear to be left-field, but make perfect sense to me AND could be just the sorts of innovations we need to progress pain management beyond the recipes and algorithms that fail to understand that people are individuals.

You see, the diagnosis of ADHD gives me a label, and access to more knowledge about people with ADHD as a group. What it doesn’t do is give anyone a good idea of the unique way ADHD plays out in me.

And BTW, people with ADHD are disproportionately more likely to experienced chronic pain, so if you’re a clinician trying to help someone with chronic pain, and that person has ADHD – there’s a good reason they didn’t do their home exercise programme, or apply their pacing strategies. These both require effective executive functioning. And if that person you’re trying to help is a woman who is also ADHD and attempting to run a household (all that planning, organising, maintaining – the cognitive labour of keeping a household running) – heaven help you! That woman could do with some compassion, simplification and support, rather than judgement and shaming. She’s already had enough of that. True story.

ADHD Guideline Development Group. Australian evidence-based clinical practice guideline for Attention Deficit Hyperactivity. Melbourne: Australian ADHD Professionals Association; 2022.

Hayes, S. C., Ciarrochi, J., Hofmann, S. G., Chin, F., & Sahdra, B. (2022). Evolving an idionomic approach to processes of change: Towards a unified personalized science of human improvement. Behaviour Research and Therapy, 156, 104155. https://doi.org/10.1016/j.brat.2022.104155

Hayes, S. C., Sanford, B. T., & Feeney, T. K. (2015). Using the functional and contextual approach of modern evolution science to direct thinking about psychopathology. the Behavior Therapist, 38(7), 222-227.

Young, S., Adamo, N., Asgeirsdottir, B. B., Branney, P., Beckett, M., Colley, W., Cubbin, S., Deeley, Q., Farrag, E., Gudjonsson, G., Hill, P., Hollingdale, J., Kilic, O., Lloyd, T., Mason, P., Paliokosta, E., Perecherla, S., Sedgwick, J., Skirrow, C., . . . Woodhouse, E. (2020). Females with ADHD: An expert consensus statement taking a lifespan approach providing guidance for the identification and treatment of attention-deficit/ hyperactivity disorder in girls and women. BMC psychiatry, 20(1), 404. https://doi.org/10.1186/s12888-020-02707-9

If a rose is a rose by any other name, how should we study treatment processes in pain management & rehabilitation?

A new instalment in my series about intensive longitudinal studies, aka ecological momentary assessment (and a host of other names for methods used to study daily life in real time in the real world).

Daily life is the focus of occupational therapy – doing what needs to be done, or a person wants to do, in everyday life. It’s complex because unlike a laboratory (or a large, well-controlled randomised controlled trial) daily life is messy and there is no way to control all the interacting factors that influence why a person does what they do. A technical term for the processes involved is microtemporality, or the relationships between factors in the short-term, like hours or days.

For example, let’s take the effect of a cup of coffee on my alertness when writing each day. I get up in the morning, feeling sluggish and not very coherent. I make that first delicious cup of coffee, slurp it down while I read the news headlines, and about 20 minutes later I start feeling a lot perkier and get cracking on my writing. Over the morning, my pep drops and I grab another cup or a go for a brief walk or catch up with a friend, and once again I feel energised.

If I wanted to see the effect of coffee on alertness I could do a RCT, making the conditions standard for all participants, controlling for the hours of sleep they had, giving them all a standard dose of caffeine and a standard cognitive test. Provided I have chosen people at random, so the chance of being in either the control group (who got the Devil’s drink, decaffeinated pseudo-coffee) or the experimental group was a toss of the coin, and provided we assume that anyone who has coffee will respond in the same way, and the tests were all equally valid and reliable, and the testing context is something like the world participants will be in, the results ought to tell us two things: (1) we can safely reject the null hypothesis (that there is no difference between decaffeinated coffee and real coffee on alertness) and (2) we can generalise from the results to what happens in the real world.

Now of course, this is how most of our research is carried out (or the ‘trustworthy’ research we rely on) – but what it doesn’t tell us as occupational therapists is whether this person in front of me will be in the very top or bottom of the bell curve in their response, and whether this will have any impact on what they need to do today.

For this unique person, we might choose another method, because we’re dealing only with this one person not the rest of the population, and we’re interested in the real world impact of coffee on this individual’s feelings of alertness. We can choose single case experimental design, where we ask the person to rate their alertness four or five times every day while they go about their usual daily life. We do this for long enough until we can see any patterns in their level of alertness ratings, and be satisfied that we’re observing their ‘normal’. During this time we don’t ask them to change their coffee drinking habits, but we do ask them to record their intake.

Then we get nasty, we give them the Devil’s decaf instead of the real deliciousness, but we do this without them knowing! So it looks just the same as the real thing, comes in the same container with the same labeling, and hope that it has the same delicious flavour. We ask them to carry on drinking as normal, and rating their alertness levels four or five times every day, and we do this for another two weeks. The only things we need to watch carefully for is that they don’t suspect a thing, and that their daily life doesn’t change (that’s why we do a baseline first).

Just because we’re a bit obsessed, and because we’re interested in the real world impact, we sneakily switch out the rubbish decaf and replace it with the real thing – again without the person knowing – and we get them to carry on recording. If we’re really obsessed, we can switch the real thing out after two weeks, and replace with the pseudo coffee, and rinse and repeat.

Now in this example we’re only recording two things: the self-reported level of alertness, and whether it’s the real coffee or not (but the person doesn’t suspect a thing, so doesn’t know we’ve been so incredibly devious).

We can then draw up some cool graphs to show the level of alertness changes over the course of each day, and with and without the real coffee. Just by eyeballing the graphs we can probably tell what’s going on…

Usually in pain management and rehabilitation we’re investigating the impact of more than one factor on something else. For example, we’re interested in pain intensity and sleep, or worry and pain intensity and sleep. This makes the statistics a bit more complex, because the relationships might not be as direct as coffee on alertness! For example, is it pain intensity that influences how much worrying a person does, and does the worry directly affect sleep? Or is it having a night of rotten sleep that directly influences worrying and then pain intensity increases?

To begin with however, occupational therapists could spend some time considering single case experimental designs with a very simple strategy such as I’ve described above. It’s not easy because we rarely ‘administer’ an intervention that doesn’t have lingering effects. For example, we can’t make someone forget something we’ve told them. This means we can’t substitute ‘real’ advice with ‘fake’ advice like we can with coffee and decaf. The ‘real’ advice will likely hang around in the person’s memory, as will the ‘fake’ advice, so they’ll influence how much the person believes and then acts on that information. There are strategies to get around this such as multiple baseline designs (see the Kazdin (2019) and Kratochwill et al., (2012) article for their suggestions as to what this looks like), and for a rehabilitation-oriented paper, Krasny-Pacini & Evans (2018) is a great resource.

If you’re intrigued by this way of systematically doing research with individuals but wonder if it’s been used in pain management – fear not! Some of the most influential researchers in the game have used this approach, and I’ve included a list below – it’s not exhaustive…

Next post I’ll look at some practical ways to introduce single case intensive longitudinal design into your practice. BTW It’s not just for occupational therapists – the paper by Ruissen et al., (2022) looks at physical activity and psychological processes, so everyone is invited to this party!

Selected Pain Rehab SCED studies (from oldest to most recent)

Vlaeyen, J. W., de Jong, J., Geilen, M., Heuts, P. H., & van Breukelen, G. (2001). Graded exposure in vivo in the treatment of pain-related fear: a replicated single-case experimental design in four patients with chronic low back pain. Behaviour Research & Therapy., 39(2), 151-166.

Asenlof, P., Denison, E., & Lindberg, P. (2005). Individually tailored treatment targeting motor behavior, cognition, and disability: 2 experimental single-case studies of patients with recurrent and persistent musculoskeletal pain in primary health care. Physical Therapy, 85(10), 1061-1077.

de Jong, J. R., Vlaeyen, J. W., Onghena, P., Cuypers, C., den Hollander, M., & Ruijgrok, J. (2005). Reduction of pain-related fear in complex regional pain syndrome type I: the application of graded exposure in vivo. Pain, 116(3), 264-275. https://doi.org/10.1016/j.pain.2005.04.019

de Jong, J. R., Vlaeyen, J. W. S., Onghena, P., Goossens, M. E. J. B., Geilen, M., & Mulder, H. (2005). Fear of Movement/(Re)injury in Chronic Low Back Pain: Education or Exposure In Vivo as Mediator to Fear Reduction? Clinical Journal of Pain Special Topic Series: Cognitive Behavioral Treatment for Chronic Pain January/February, 21(1), 9-17.

Onghena, P., & Edgington, E. S. (2005). Customization of pain treatments: single-case design and analysis. Clinical Journal of Pain, 21(1), 56-68.

Lundervold, D. A., Talley, C., & Buermann, M. (2006). Effect of Behavioral Activation Treatment on fibromyalgia-related pain anxiety cognition. International Journal of Behavioral Consultation and Therapy, 2(1), 73-84.

Flink, I. K., Nicholas, M. K., Boersma, K., & Linton, S. J. (2009). Reducing the threat value of chronic pain: A preliminary replicated single-case study of interoceptive exposure versus distraction in six individuals with chronic back pain. Behaviour Research and Therapy, 47(8), 721-728. https://doi.org/doi:10.1016/j.brat.2009.05.003

Schemer, L., Vlaeyen, J. W., Doerr, J. M., Skoluda, N., Nater, U. M., Rief, W., & Glombiewski, J. A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behaviour Research and Therapy, 108, 58-67. https://doi.org/https://doi.org/10.1016/j.brat.2018.07.002

Caneiro, J. P., Smith, A., Linton, S. J., Moseley, G. L., & O’Sullivan, P. (2019). How does change unfold? an evaluation of the process of change in four people with chronic low back pain and high pain-related fear managed with Cognitive Functional Therapy: A replicated single-case experimental design study. Behavior Research & Therapy, 117, 28-39. https://doi.org/10.1016/j.brat.2019.02.007

Svanberg, M., Johansson, A. C., & Boersma, K. (2019). Does validation and alliance during the multimodal investigation affect patients’ acceptance of chronic pain? An experimental single case study. Scandinavian Journal of Pain, 19(1), 73-82.

E. Simons, L., Vlaeyen, J. W. S., Declercq, L., M. Smith, A., Beebe, J., Hogan, M., Li, E., A. Kronman, C., Mahmud, F., R. Corey, J., B. Sieberg, C., & Ploski, C. (2020). Avoid or engage? Outcomes of graded exposure in youth with chronic pain using a sequential replicated single-case randomized design. Pain, 161(3), 520-531.

Hollander, M. D., de Jong, J., Onghena, P., & Vlaeyen, J. W. S. (2020). Generalization of exposure in vivo in Complex Regional Pain Syndrome type I. Behaviour Research and Therapy, 124. https://doi.org/https://doi.org/10.1016/j.brat.2019.103511

Edwin de Raaij, E. J., Harriet Wittink, H., Francois Maissan, J. F., Jos Twisk, J., & Raymond Ostelo, R. (2022). Illness perceptions; exploring mediators and/or moderators in disabling persistent low back pain. Multiple baseline single-case experimental design. BMC Musculoskeletal Disorders, 23(1), 140. https://doi.org/10.1186/s12891-022-05031-3

References

Kazdin, A. E. (2019). Single-case experimental designs. Evaluating interventions in research and clinical practice. Behav Res Ther, 117, 3-17. https://doi.org/10.1016/j.brat.2018.11.015

Krasny-Pacini, A., & Evans, J. (2018). Single-case experimental designs to assess intervention effectiveness in rehabilitation: A practical guide. Annals of Physical & Rehabilitation Medicine, 61(3), 164-179. https://doi.org/10.1016/j.rehab.2017.12.002

Kratochwill, T. R., Hitchcock, J. H., Horner, R. H., Levin, J. R., Odom, S. L., Rindskopf, D. M., & Shadish, W. R. (2012). Single-Case Intervention Research Design Standards. Remedial and Special Education, 34(1), 26-38. https://doi.org/10.1177/0741932512452794

Ruissen, G. R., Zumbo, B. D., Rhodes, R. E., Puterman, E., & Beauchamp, M. R. (2022). Analysis of dynamic psychological processes to understand and promote physical activity behaviour using intensive longitudinal methods: a primer. Health Psychology Review, 16(4), 492-525. https://doi.org/10.1080/17437199.2021.1987953

The joy of having many data points

Researchers and clinicians are drawn to studies with many participants. Especially randomised controlled trials, where two groups are randomly divided and one gets “the real thing” while the other does not. The joy comes from knowing that results from these kinds of studies suggest that, all things being equal, the differences between the groups is “real” and not just by chance.

When we come to analyse the graphs from these kinds of studies, what we hope to see are two nice bell-shaped curves, with distinct peaks (the arithmetic mean) and long tails either side – and a clear separation between the mean of one group (the experimental one) and the control group.

It should look a bit like this:

Now one of the problems in doing research is that we can’t always guarantee a large sample – for example, it’s difficult to find enough people with a relatively rare problem like complex regional pain syndrome to randomly split the groups to iron out major differences between them. And, this kind of research design presumes the principle of ergodicity – here for more information from Wikipedia, or here for a more detailed examination relating to generalising from groups to individuals.

This research design also struggles to deal with distributions that don’t conform to the lovely bell curve – things like bimodal distributions, or skewed distributions. And if we draw only on the mean – we don’t get to see these delightful peaks and troughs – or the people at either end of the curves.

The more variables we add to analysis, the more complex the statistics needed – so in the case of pain research, we often have to simplify the research question, do complex maths to “normalise” the results, and ultimately we get research that doesn’t look the slightest bit like the people we see in clinical practice. No wonder we get results that don’t look nearly as nice as the research studies!

Now I don’t mind statistics at all, but I do mind research papers that don’t declare the assumptions made when using analyses. Many papers assume the reader knows these assumptions – unlike qualitative research where the authors philosophical assumptions are openly stated, and where epistemology and ontology are considered part of the research design.

So why might lots of data points be cool?

Most of us working in a clinic will be seeing an individual. One person, with all their unique history, attributes, vulnerabilities, preferences and values. When we extrapolate the findings from RCTs especially, and apply them to this unique person, we risk failing to acknowledge that we’re violating the principle of ergodicity, and that our person may be one of those falling at the tails of that bell curve: or worse, in the middle of a bimodal distribution. Given that most pain problems, particularly persistent pain, are multifactorial, applying a single “solution” no matter how many studies showing a positive effect there are, may not cut it.

For years I’ve been pointing out the value, both in research and in clinical practice, of single case experimental designs. There are loads of reasons for using this approach, and it’s a method with a long history. Essentially, the person serves as their own control, they take lots of measurements before introducing a treatment, the treatment is applied and changes in the measurements are closely monitored. If there’s a change in the expected direction, we can test whether it was the treatment by withdrawing said treatment, and closely monitoring any changes in the measurements. Of course, there are challenges to using this approach – we have to be able to withdraw the treatment, and that doesn’t work if it’s something like “information”. But there are ways around this – and the method of intensive longitudinal repeated measures is becoming a rich source of information about change processes.

Change processes are changes that mediate the final outcome. In other words, when we do a treatment, either the treatment directly causes the end outcome – eg give someone a raised toilet seat, and they can get off the toilet because the toilet is at a good height for them – or via some other process – eg by giving the raised toilet seat, the person gains confidence to get on and off the toilet so it’s not the toilet seat per se, but enhanced confidence that mediates the outcome.

Change processes matter because once we’ve identified them, we can develop ways to work with them more effectively. We can also measure the progress a person makes on more than one change process, and refine what we do in our treatments in response. The more data points we collect from that one person, the more we can track their trajectory – and the better we can understand what’s going on in their world to influence their responses.

Technology for repeated measures in real time has become much smarter and more invisible than it used to be. We can still employ some of the simpler techniques – a pen and paper diary still has used! But we then have to rely on the person remembering to fill them in. Passive data collection using wearable technology is something many of us use to track fitness, diet, sleep, travel, heart rate variability and so on. Set the parameters, and as long as you’re wearing the gadget, your data is captured.

Before anyone leaps in to tell me the gadgets are prone to measurement error, believe me I know! For example, monitoring sleep using a phone (or even a smartwatch) doesn’t monitor sleep depth, it monitors movement (and records snoring LOL). However – and this is important – it is more likely to get used than anything requiring me to do something extra in my day. And we can integrate both passive data collection and active data collection using similar technologies. For example, it’s not difficult to send an SMS (instant text message) at random times during the day to ask someone a brief and simple question.

Where these repeated measures approaches get a bit gnarly is in analysing the data – but even this doesn’t mean it can’t be done. The analyses require a good understanding of what it is being measured (and why), and how best to use complex statistical analyses to understand how one factor (variable) might influence another.

The advantages of using intensive measures in clinic lie with understanding how, for example, one day of additional activity (measured using the step counter combined with GPS tracking) might directly influence mood the next day (or pain, or energy levels or whatever). We still need to apply critical thinking to uncover the causal mechanisms (is it plausible for factor X to directly cause a change in factor Y?) and to check whether the results are stable over time (or just a chance fluctuation). Another advantage is that we can quickly step in to experiment with an intervention – and watch what happens. For example, if we think being very active on one day has an effect on mood the following day, we can test this out: try experimenting with a day of lots of activity, and monitor what happens the next day, or the converse, do very little and monitor what happens with mood the following day. Rinse and repeat until we’re certain that for this person, activity level has an effect on mood.

And the study that made me think about all this? It’s this one by Whibley, Williams, Clauw, Sliwinski and Kratz (2022) – click

If we want to really develop excellent clinically-relevant research-based ways to understand what might be going on for the one person in front of us, and not for the large mixed group of people included in a randomised controlled trial, we could be inspired to look at intensive repeated “micro-longitudinal” research strategies as models for clinic-based research.

Whibley, D., Williams, D. A., Clauw, D. J., Sliwinski, M. J., & Kratz, A. L. (2022). Within-day rhythms of pain and cognitive function in people with and without fibromyalgia: synchronous or syncopated? Pain, 163(3), 474-482. https://doi.org/10.1097/j.pain.0000000000002370

Making sense: Does it help people with pain?

I love it when my biases are challenged (seriously, I do!). And in the study I’m talking about today, my biases are sorely challenged – but perhaps not as much as I initially thought.

Lance McCracken is one of my favourite researchers investigating processes of acceptance and living a good life in the presence of chronic pain. In this paper, he collaborates with a colleague currently involved in the INPUT pain management programme established at Guy’s and St Thomas’ NHS originally by Michael Nicholas who draws on a CBT model of pain management, and now more firmly in the third wave camp of ACT (Acceptance and Commitment Therapy). The paper is ‘Making sense’ and describes a cross-sectional study of sense-making by people with chronic pain attending the INPUT programme.

Making sense is something humans do without even thinking about it. Humans are prone to (and probably for good adaptive reasons) generate patterns out of random information. We gaze at shadows at night and think we see faces or intruders, and we look at clouds and see dragons and kittens. When we’re sore we also try to make sense of what’s going on – does this ouch feel like something I’ve had before? does it feel mysterious or can I carry on? have other people I know had this same ouch and what did they do?

In the search for making sense out of pain that otherwise seems random, clinicians have, since time immemorial, generated all sorts of stories about what might be going on. The wandering uterus. The evil spirit. The slipped disc. The leg length discrepancy. Clinicians, when faced with their own uncertainty about what exactly pain represents, can encourage patients to seek diagnosis: some sort of “explanation” for the problem. When that’s insufficient, more recently we’ve seen the flourishing of explanations for pain from a neurobiological perspective, particularly “pain as an expression of threat to bodily integrity”, a decision that is “made by the brain”.

My own research, investigating the experiences of people who indicated they live well with pain, reflected this same process. They sought a name for their experience, they wanted to understand the impact of pain on daily doing – those fluctuations and variances that emerge during the days and weeks early in the journey of learning that this pain isn’t going anywhere soon (Lennox Thompson, et al., 2019). Note that the group of people I recruited had come to the point where they identified that they were living well with pain – this group of people represent a small percentage of those who live with chronic pain, and not those who are seeking treatment.

OK, so what did McCracken and Scott (2022) find?

Bear in mind that this study was designed to measure the construct of sense-making in people seeking treatment for chronic pain. Also bear in mind the authors come from a perspective of functional contextualism, or a philosophy of science that argues for “…studying the current and historical context in which behavior evolves … to develop analytic concepts and rules that are useful for predicting and changing psychological events in a variety of settings.” What this means to me is that the form of whatever behaviour we’re observing/measuring matters less that the purpose or function of that behaviour in a specific context.

OK, on with the study.

451 adults attending an interprofessional pain management programme were participants in this study, and the measures were taken before they started treatment. They completed a battery of measures including ones measuring acceptance, cognitive fusion, committed action, tolerance of uncertainty, and pain measures such as the Brief Pain Inventory, numeric rating scale.

The research aim was to investigate a way to measure not only the positives from sense-making, but also the potential adverse effects of doing so. Concurrent with developing the measure, analyses of the inflexible ways we make sense were carried out in relation to outcomes: pain interference, depression and participation.

In the results (read through the analysis, BTW, it’s beautifully detailed), women were found to overthink compared with men, older people tended to want to avoid a sense of incoherence, and more educated people also tended to overthink.

Now, a little theory: coherence can be either literal or functional. Literal coherence is like “common sense” – so if I interpret my pain as meaning something is damaged, and moving it is bad, this is literal coherence. Functional coherence might occur when I realise that I hurt whether I’m doing things, or not, and I decide “this is how it is, I might as well get on with life”. In effect, as McCracken and Scott say, “these terms reflect the difference between language, thoughts and behavior fitting together consistently, (thoughts agree with other thoughts and behavior) versus behavior and goals in life fitting together consistently (behavior patterns succeed in reaching goals even when this seems to contradict “good sense”).

In daily life, people consistently prefer to solve problems and avoid insoluble problems. Makes sense, doesn’t it? Why try to deal with things that won’t change, even if we try hard to change them? BUT then we have insoluble problems that don’t make sense: the earthquakes in Christchurch New Zealand in 2011-2013 were random and we hadn’t had earthquake activity in our city for centuries – consequently we had many crackpots coming up with “predictions” for the next swarm of earthquakes based on phases of the moon or fracking or climate change. Anything to help people feel like they had a sense of control over something that did not make sense.

Chronic pain is often an equally insoluble problem. Many times pain like this does not make sense at all. No injury precipitated my fibromyalgia. There’s no imaging or biomarker for pain intensity. Existing biomedical diagnoses based on structural or biochemical or neurological processes don’t tell us much about who might get chronic pain, how intense it might be, or the impact of that pain on a person’s life. But clinicians and people with pain earnestly seek something, something to explain what’s going on.

For both clinicians and people living with pain, constantly searching for The Thing to explain pain can be exhausting, demoralising and linked to unhelpful patterns of behaviour. Clinicians might repeat the same treatment even though it didn’t work the first time. They might refer the person for more investigations, just in case something was missed. They might refer the person to another clinician, or, worse, they may attribute the pain to “mental illness” or “psychosocial factors”. Many, many clinicians think that giving a person a book about how pain might be constructed “in the brain” will be enough for people to make sense of what’s going on. People with pain might be afraid to get on with life in case they’re doing harm, or because they’re hoping the fix might be around the corner and life can “get back to normal”. They may spend enormous sums of money, time and emotion on treatments to either diagnose the problem, or treat it. They might spend hours brooding on what it could be. Their lives often stop – people with pain have called this “the endless limbo”.

Now there is a measure of sense-making I guess we’ll find out more about this part of learning to live with pain. The three subscales identified were “avoidance of incoherence”, “overthinking”, and “functional coherence”, though the last subscale had poor psychometric properties so wasn’t included in the final analyses.

My wish, however, is that rather than applying this measure to people attempting to make sense of something outside of their experience, we might develop a measure of how rigidly clinicians stick to “coherence” in the face of puzzling pain problems. Perhaps what might be even more influential, we might develop a measure of what happens when a vulnerable person trying to make sense of their pain meets a clinician with a high level of inflexibility about “what is going on”, because despite all the research we have into people living with pain, we haven’t yet recognised the power of the clinician in perpetuating unhelpful inflexibility.

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

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195

“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

Scopes, roles, interprofessional practice and person-centred healthcare

A topic that almost immediately gets my hackles up is the one of scopes and roles in pain management and rehabilitation. It’s like “Oooh but that’s MY stuff, get out of it!” and I can see Gollum saying “my preciousssss”…

I trained and graduated in 1984. As a raw newbie occupational therapist I couldn’t articulate much of what my profession brought to healthcare, except that I knew “doing”, “activities” or “occupation” was important to human wellbeing, and that I’d been trained to analyse these. I’ve learned a lot since then and got a PhD in the process. Developing as people and as clinicians is, I hope, deeply embedded in us as professionals.

Interprofessional practice is a model of healthcare recommended in pain management and rehabilitation (Oslund, et al., 2009). Interdisciplinary/interprofessional teams involve different health professionals working alongside one another using their areas of expertise, but where all use a common over-arching model such as a biopsychosocial approach. Teams meet regularly to collaborate on treatment goals and priorities (Ruan & Kaye, 2016). There is limited hierarchy and extensive communication, cooperation, and overlap between team members (Körner, 2010).

True interprofessional practice is rare. Why? Because teams on paper are not teams. Teams need time together both formally and informally, stability amongst members, a pool of common knowledge as well as an understanding of what each team member brings in to the mix. Needless to say, high trust is crucial, along with ongoing communication (Zajak et al., 2021). We can’t just use professional labels to know what another profession can offer because we [should] keep on developing.

One of the largest contributors to poor interprofessional teamwork is lack of confidence. Not just lack of confidence in the skills of the other team members, but lack of confidence in one’s own professional contribution. High trust in one another, and yourself is critical.

When you’re feeling uncertain and find it hard to articulate what you bring to a team, any encroachment on “your” turf (call it scope) will likely engender a worry that you’re unnecessary. That others are “taking over” – and in turn, this can mean you search for faults in what other team members do because this helps affirm your rights and your specialness. You might want to rigidly control who does what in a team. It boosts your sense of worth but at the expense of other team members, and more importantly, at the expense of the person the team is trying to help.

The thing is, the person with pain does not care which person in a team works with them. What they care about is that the clinician is knowledgeable, and empathic. Trustworthy. The quality of the interpersonal relationship accounted for 54.5% reduction in pain in one study by Fuentes (Fuentes et al., 2014). People with pain want to know that their individual needs have been taken into account in their treatment plan (Kinney et al., 2020).

If you’re finding it hard to work in a team, perhaps feeling vulnerable about your worth, try this:

Ask your team to meet for an hour, tops.

Ask each member of your team to say what they bring to the team – not just their profession, but what else? Consider age, humour, cultural background, additional courses, personal interests outside of work, the “social secretary”, the “librarian”…and professional skills.

Pool all of these contributions on a big piece of paper – use post-it notes of different colours for each person.

Group similar contributions together in the middle of the paper – and spread unique contributions around the outside.

Review the paper and ask each participant to add any contributions they’ve just been reminded of.

Take a good look at the common contributions and the unique ones: these are what make up your team and they’re there to use for better person-centred care.

You can add some reflective questions to this activity.

• What are the areas of overlap? It could be goal-setting, offering information about pain, movement practices, addressing fear of pain/reinjury, helping build confidence…
• What areas of uniqueness are there? These could be hypnosis, knowledge translation from clinic to daily life, exercise prescription, the ability to write a prescription for medications
• What surprised you? This could be the degree of overlap, or the contribution you didn’t expect from someone, or perhaps a gap in the team’s knowledge or skills
• What shows up in yourself as you review these contributions? These could be “yeah, right, I don’t believe you can do THAT!” or “but I can do that too!”

Handling your response to what shows up to that last question is where the enormous value of this activity lies. Remember, the team is there for the person with pain, not for you as clinicians. If you think someone is claiming a contribution you can do with more skill, this only means that you can offer that person help from time to time. If you think that you’d like to contribute in an area and you didn’t add that as one of your contributions, now is the time to put it on the paper.

Take a copy of that piece of paper, and keep it close to you.

Your mission from then on, should you choose to accept it, is to review this set of contributions when you are next developing a treatment plan for a person seeking your help. Choose the combination of clinicians that offers the range of skills and knowledge, the interpersonal skills suited, and the availability of each clinician so that the person you hope to help will be seen by a team, and not just a set of individual clinicians. Oh and add in a good case formulation as well…

Remember: it’s all about the person in person-centred pain management and rehabilitation.

Fuentes J, Armijo-Olivo S, Funabashi M, Miciak M, Dick B, Warren S, Rashiq S, Magee DJ, Gross DP. (2014). Enhanced therapeutic alliance modulates pain intensity and muscle pain sensitivity in patients with chronic low back pain: An experimental controlled study. Physical Therapy. 94:477–89.

Kinney, M., Seider, J., Beaty, A. F., Coughlin, K., Dyal, M., & Clewley, D. (2020, Aug). The impact of therapeutic alliance in physical therapy for chronic musculoskeletal pain: A systematic review of the literature. Physiotherapy Theory and Practice, 36(8), 886-898. https://doi.org/10.1080/09593985.2018.1516015

Körner, M. (2010). Interprofessional teamwork in medical rehabilitation: a comparison of multidisciplinary and interdisciplinary team approach. Clinical Rehabilitation, 24(8), 745-755. https://doi.org/10.1177/0269215510367538

Oslund, S., Robinson, R. C., Clark, T. C., Garofalo, J. P., Behnk, P., Walker, B., Walker, K. E., Gatchel, R. J., Mahaney, M., & Noe, C. E. (2009). Long-term effectiveness of a comprehensive pain management program: strengthening the case for interdisciplinary care. Baylor University Medical Center Proceedings, 22(3), 211-214. https://doi.org/10.1080/08998280.2009.11928516

Ruan, X., & Kaye, A. D. (2016). A Call for Saving Interdisciplinary Pain Management. Journal of Orthopaedic and Sports Physical Therapy, 46(12), 1021-1023. https://doi.org/10.2519/jospt.2016.0611

Wampold, B. E. (2018). The Therapeutic Value of the Relationship for Placebo Effects and Other Healing Practices. International Review of Neurobiology, 139, 191-210. https://doi.org/10.1016/bs.irn.2018.07.019

Zajac, S., Woods, A., Tannenbaum, S., Salas, E., & Holladay, C. L. (2021). Overcoming Challenges to Teamwork in Healthcare: A Team Effectiveness Framework and Evidence-Based Guidance. Frontiers in Communication, 6(6). https://doi.org/10.3389/fcomm.2021.606445

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.

Rehab Fails: What goes wrong in pain rehabilitation 3

I’m beginning to think this series could grow into a monster – so many #rehabfails to pick from!

Today’s post is about rehabilitation that doesn’t fit into the person’s life. Or that the person hasn’t been supported to fit the rehabilitation into their life. THEIR life, not ours!

You know what I mean: for six to twelve weeks, this person has been coming along to their treatment sessions, doing the things the therapist suggests. They make progress and it’s time to end the programme. “Good bye patient” the therapist says. And the patient skips off into the sunset, fixed for life.

Yeah right.

Roll that movie right back to the start.

At the first consultation, therapists often ask the person about what they’d like to achieve. Often the person doesn’t really know, after all most people don’t routinely set goals – and particularly if someone is experiencing the disruption of dealing with a painful problem that doesn’t go away like it should. It’s not for nothing that people describe this time as being in “zombie land” and dealing only with “the essentials” (Lennox Thompson, et al, 2019). Nevertheless, therapists ask and people are expected to come up with something that can then form the focus of subsequent therapy. A recent systematic review, however, found that many studies describing goal setting practices fail to implement all the components of effective goal setting – in particular, omitting “formulation of coping plan” and “follow up” (Kang, et al, 2022).

Now these two components are crucial for long-term adherence to rehabilitation, and especially in persisting pain where it’s probable the person will need to follow therapeutic practices for a very long time. The “coping plan” consists of identifying barriers and facilitators to doing the actions that lead to achieving goals, and also involves assessing confidence to do so, along with generating a plan to deal with unexpected situations. “Follow up” involves self-evaluating progress, evaluation, and adjusting the plan to suit. (Kang et al., 2022).

Why are these two components so important?

Well, think of one of your recent patients. Think about the things you (and others in your clinical team) asked that person to do. Are any of these things typical for this person? Are they habits, built into daily routines? Are they familiar? What is this person’s daily routine like? What does their family need to do and what does this person need to do for them? If the person usually works, and is still trying to maintain that on top of their usual home and family activities, how much are you and your colleagues asking the person to do on top of these? When they’re already struggling with the debilitating effects of their pain problem?

See why we might have trouble with adherence? Let alone ensuring that the person feels it’s worthwhile doing what it is we’re asking them to do!

I’ve seen this problem time and time again. Little, if any, consideration of this person’s usual daily life context. Little thought to the burden of trying to manage normal life and what the therapists is asking the person to do. No discussion about what might get in the way of fitting these therapy things into their life – and then I’ve heard clinicians have the audacity to suggest the person isn’t motivated!

So much for person centred rehabilitation. So much for helping the person work out how they might fit these things in, and how they might develop a routine or habit that they can continue once they leave the therapist’s care.

While I’ve looked at goal setting and therapy for persistent pain, what I notice is that even in acute musculoskeletal management, studies have shown that therapists don’t really understand goal setting. Alexanders and colleagues (2021) found that physiotherapists undertaking goal setting for anterior cruciate ligament rehabilitation might employ SMART goals – but didn’t understand the theory behind goal setting, didn’t know that expectations were important, and didn’t use feedback sufficiently. And this is for SMART goals that have already been found wanting (see Swann et al., 2022).

What do I suggest?

1. Start by understanding the person’s current responsibilities in life, and the impact their pain problem is having. Recognise that those impacts will also have an impact on their capability for adding to their daily routine.
2. With the person, establish the best time of day for them to do whatever it is you think they should do. Work through what might get in the way – and what might support them.
3. You may need to help them develop some additional skills to deal with what might get in the way of undertaking your activities – maybe skills to communicate with family, or the boss, so they can take 10 minutes out to do the breathing practice you’ve suggested, maybe some work with thoughts to help them be OK with guilt for “not doing things as normal.”
4. Assess their confidence to engage in this additional task. Use motivational interviewing to boost their confidence (and it probably would help you to consider the importance of what you’re asking them to do in the context of their values and activities).
5. Check how much you’re asking the person to do – is it achievable in this person’s life? A certain intensity might be theoretically important for physiology, but if the person doesn’t do it because he or she can’t fit it in, it just won’t get done.
6. Check in with the person in between appointments. If you see them once a week – send a text 3 days in to that week to see how they’re getting on. Or ask the person if they’ll send you a text to let you know. Give feedback, alter your plan, encourage, celebrate.
7. And once the person is nearly ready for discharge, make sure you have a set-back or relapse prevention plan in place. What should this person do if things begin to go pear-shaped? Do they need to keep going at the same intensity as they have during your therapy? What are their warning signs for things beginning to fall apart? (clue: it’s often not when people are beginning to hurt again, it’s often because the person is feeling good and starts to drop the things that have helped!)

Don’t do #rehabfails

Kang, E., Kim, M. Y., Lipsey, K. L., & Foster, E. R. (2022). Person-Centered Goal Setting: A Systematic Review of Intervention Components and Level of Active Engagement in Rehabilitation Goal-Setting Interventions. Archives of Physical Medicine and Rehabiltation, 103(1), 121-130 e123. https://doi.org/10.1016/j.apmr.2021.06.025

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195

Lenzen SA, Daniels R, van Bokhoven MA, van der Weijden T, Beurskens A. (2017). Disentangling self-management goal setting and action planning: a scoping review. PloS One,12:e0188822.

Swann, C., Jackman, P. C., Lawrence, A., Hawkins, R. M., Goddard, S. G., Williamson, O., Schweickle, M. J., Vella, S. A., Rosenbaum, S., & Ekkekakis, P. (2022, Jan 31). The (over)use of SMART goals for physical activity promotion: A narrative review and critique. Health Psychology Review, 1-16. https://doi.org/10.1080/17437199.2021.2023608

Experiential avoidance – and persistent pain

Most of us will recognise that when we experience a pain, we firstly notice where it is, and the sensory qualities of it. We automatically make judgements about that pain – some of this judgement is about whether we recognise this pain (have we had it before?), some is about whether it’s important enough to interrupt what we’re doing (should I drop this hot cup of coffee, or can I hold onto it long enough to place the cup carefully on the bench), and some is about how we feel emotionally (yes, swearing is common when we smack our thumb with a hammer!).

In our response to acute pain, we often want to avoid or escape whatever we think gave us the pain – unless, of course, it’s something we choose to do even though it hurts. You know, things like lifting really heavy weights, running distances, taking rugby tackles, eating chilli! But in most cases where the pain is unexpected we’re inclined to want to make it stop, get away from the thing that probably caused it, and take a few minutes (or longer) to not do the things that make it worse. So we avoid walking on a newly sprained ankle and we don’t keep poking and prodding at a cut or a bruise.

Avoiding is quite common and even helpful when we experience the initial onset of a pain.

So why do we talk about “fear avoidance” as if it’s a bad thing?

Well, it’s because avoiding beyond a useful period of time often leads to ongoing problems. Some of these problems are possibly over-stated: things like “deconditioning” are probably not as much of a problem as we once thought (see Andrews, Strong & Meredith, 2021; Tagliaferri, Armbrecht, Miller, Owen et al, 2020). While other forms of avoidance may never even be considered.

What do I mean?

For a moment, think of a “weekend warrior”. The kind of person who heroically plays sport on a Saturday, trains once or twice during the week, and otherwise works hard and plays hard. Let’s think of this person as a male, perhaps in his late 30’s, thinks of himself as a hard worker and a family man. When he sprains his wrist after a particularly hard tackle in a weekend rugby game, he’s the kind who shrugs it off, and just keeps going. After a few weeks and his wrist doesn’t get much better, he heads off to see his local physio.

We wouldn’t usually think of him as an “avoider”. He’s not pain-avoidant, but sometimes because he doesn’t stop to take care of his wrist sprain, he ends up with a more troublesome injury. He might even develop a “boom and bust” pattern of activity: on a day he’s feeling good he’ll push through, but then his wrist starts playing up and he needs to take a day or two off.

I’m going to call it like I see it: this bloke is avoiding. What he’s avoiding is the experience of being vulnerable, of seeking help, of being advised to stop pushing himself for a day or so.

You see, experiential avoidance is what we do to avoid feelings (emotions) and actions that we don’t like or don’t want.

We see experiential avoidance most often described in pain research in the group of people who don’t resume their usual daily activities in part because they’re afraid of their pain. Or they’re afraid of what their pain might mean, or the effect of their pain on other things they need or want to do. For example, Angelina (see here) might be worried about the effect of pain on her sleep. And we’re reasonably OK with offering these people some information about what might be going on in their tissues, and that the relationship between pain and what’s going on in the tissues might not be as straightforward as it is when we hit our thumb with a hammer.

What we might be less aware of, and perhaps struggle to deal with is when a person appears to be doing the right things, like they’re remaining active and staying at work, but might be overdoing it. What might this person be avoiding? Perhaps, as I’ve suggested in the example above, it’s about avoiding feeling vulnerable, feeling like he’ll be told to slow down for a bit. Slowing down might be a sign, at least to our weekend warrior, that he’s not as young as he used to be. Perhaps he’s afraid of stopping because that means his busy mind can start to plague him with unhelpful thoughts about things he’s worrying about.

Experiential avoidance, like avoidance when a painful injury first happens, isn’t always a negative. When it’s used as the key strategy for life, indiscriminately and with an eye only to short-term benefits and not long-term consequences, then it’s not so good.

You see I hope we can help people to develop psychological flexibility: the ability to choose a response to any given situation that maintains moving towards what matters even if this means doing what feels odd or even a backwards step.

I also think we might benefit from developing psychological flexibility ourselves as clinicians. If we continue using the same old, same old strategy even if the results aren’t what we hoped for, we’re not helping anyone.

Andrews NE, Strong J, Meredith PJ. (2012). Activity pacing, avoidance, endurance, and associations with
patient functioning in chronic pain: a systematic review and meta-analysis. Archives of Physical Medicine & Rehabilitation. 93(11): 2109–21.e7, https://doi.org/10.1016/j.apmr.2012.05.029 PMID: 22728699

Tagliaferri, S., Armbrecht, G., Miller, C., Owen, P., Mundell, N., Felsenberg, D., Thomasius, F., & Belavy, D. (2020). Testing the deconditioning hypothesis of low back pain: A study in 1182 older women, European Journal of Sport Science, 20:1, 17-23, DOI: 10.1080/17461391.2019.1606942

Making first contact: What to do with all that information! Part 5

People come to see us because they have a problem. So the formulation approach I’m taking today begins from “the problem” and works back and forward. It’s called a “network” model, and is something many of us do without knowing that’s what we’re doing. The network model can also be called a functional analysis where we’re looking at what happens, and what a person does, and the ongoing consequences or loops that occur over time.

Angelina comes to see you because her neck is very sore. She’s not sure why it’s sore, or what happened to start it off, but she thinks it could be after working for a week at a new workstation where she had to look to the right to read documents, and straight ahead to work on the main monitor. It’s been there for over six months, and she’s come to see you now because she has a week of annual leave and some time to spend on herself. She’s played with changing her pillows because her neck is more uncomfortable in the morning, and it gets painful towards the end of the day just before she heads to sleep. She’s having trouble turning her head to reverse down her driveway, and looking up is almost her least favourite thing. Her sleep is OK once she’s got off to sleep, but initially it takes her a while to fall asleep because she can’t get comfortable. Her partner is getting frustrated with her because she doesn’t want to kiss him because that means she has to look up, and she doesn’t sit on the couch with him any more because he likes to rest his arm around her shoulders – and that increases her pain. She’s irritable and finds herself getting snappy at him. Angelina is in her mid-50’s, otherwise well, but has always lived with various aches and pains, most of which she ignores until they go away. She has had a painful shoulder and lateral elbow pain that lasted for over a year, but has gradually settled down – she didn’t do anything special to manage those after having only a small response to a steroid injection into her shoulder.

Angelina’s main concern is to establish whether her neck pain is anything to worry about, or whether it’s just more of the same, like her shoulder and elbow pain. Her other focus is on getting a comfortable position to go off to sleep because she thinks this is adding to her problem.

OK, so we have a lot of information about Angelina, and we can organise this information in many different ways. Given her main concern is her prognosis and then her sleep, we need to make sure the way we organise the information offers a possible explanation – a hypothesis.

Take a look at the network diagram below to see how I’ve sketched the information out – you’ll note that at this point I’m not trying to develop a diagnosis, I’m focusing on the problem as she sees it.

The matrix I’ve used here comes from Hofmann, Hayes & Lorscheid (2021) Learning Process-based Therapy, published by Context Press, New Harbinger.

What I’ve done is summarised the processes that I think might be relevant to Angelina’s presentation, and drawn the relationships between various aspects that she’s described. You might organise this information differently – and I’d usually do this in collaboration with the person.

If you look closely at the networks, you’ll see several loops that likely will continue if something doesn’t change. One to spot is this set below:

You can see that she’s worrying about her sleep, doesn’t get comfortable as she goes off to sleep, feels fed up, has changed her pillow (in line with her self-concept of someone who is a practical person), and the whole network will likely remain winding itself up unless “something” comes to disrupt this pattern.

This set of relationships raises some factors we need to consider when we’re thinking of interventions. As someone who sees herself as a practical person who doesn’t seek healthcare often, and has had previous bouts of pain that settled without specific treatment (though she sought it for her shoulder), we could interpret this as meaning she doesn’t panic about her situation too much – but we could also wonder if, because she’s seeking help now, she’s seeing her problem as different from previous pain problems and maybe this one is worrying her more than she’s ready to acknowledge. Just to the right of the loop I’ve shown above, you’ll see a box where she says “I’ll deal with it if it doesn’t get in the way of my family and relationship”. This is important – it’s an expression of how she sees herself, an important value, and her motivation for seeking help is also framed in terms of maintaining her loving relationship. For this reason, I’d be looking for interventions that either won’t intrude on her family life and routines, or I’ll be looking for ways to frame whatever treatment suggestions I make in terms of how this will support her relationship.

By drawing a network diagram showing potential processes that might be influencing Angelina’s presentation, I’m answering my question “why is she presenting in this way at this time, and what might be maintaining her predicament” – she really wants a prognosis so she can establish a strategy to maintain her relationship with her family, keeps her “practical person” view of herself alive, and in a way that she can still fulfill her desire (and others’ expectations) to be fully productive at work.

I could analyse (or organise) Angelina’s information in lots of different ways. This is just one – and in some ways, the particular model I use to assemble her information is less important than ensuring Angelina is an equal partner in sketching out these relationships. I could have drawn the Tim Sharpe CBT model or used an ACT-based model and looked for patterns of psychological flexibility. I could have used Vlaeyen’s fear-avoidance model – and I’m sure there are plenty of others that might have been useful.
Irrespective of the model, what needs to be evident is using the information the person offers us, modifying the way we approach therapy as a result, and collaborating with the person to decide treatment priorities. This means we as clinicians need to be nimble, responsive, adaptive, and stop using treatment protocols! Any approach that suggests offering the same approach irrespective of the unique things influencing a person’s presentation is doomed to do a half-arsed job. These protocols might work for some, but they won’t work for all, and they may fail to address the real reason the person came to see us in the first place.