Clinical reasoning

Making the first contact


How do we begin working with someone who is asking for help with their persistent pain? In this post I’ll describe some of the considerations I have when I begin, because as Benedetti points out, the “meet the therapist moment” is one of the most potent times in the therapeutic ritual (Benedetti, 2011). It’s the time when the person’s expectations and the clinician’s empathy and competence meet, and the “meaning response” blooms.

My two clinical questions are:

  1. Why is this person presenting in this way at this time, and what’s maintaining their predicament?
  2. And what is this person’s main concern?

But before I ask these questions, I want to take a moment to think about the person and what might be going on in his or her mind.

Benedetti points out that expectancies are an important part of a response to treatment – whether that treatment has any active action, or not. Expectancies are about what a person brings to a therapeutic encounter: there are two, one is stimulus expectancies (anticipations of external events – eg that the next painful experience will be less), and the other is response expectancies (predictions of your own nonvolitional response – eg that after doing this thing, I expect to experience less pain) (Kirsch, 1985).

People who come to see a clinician, especially a clinician from a little-known profession (occupational therapy!) will hold expectancies about what that person will do, but these will likely be weaker than the expectancies a person might hold about seeing a well-known profession. The strength of an expectancy is different from the direction of an expectancy – for example, a negative experience with a physiotherapist might lead to a strongly negative expectancy about future treatments, while not having had an experience with an occupational therapist might lead to a weakly positive expectancy about what’s about to happen.

Along with expectancies, the person will likely be anxious about what’s to come. The possibility of something that might help (or not), meeting a new clinician, and living with pain are all stressors – and anxiety erodes a person’s ability to absorb lots of information, while biasing them towards remembering threatening words (Reidy & Richards, 1997).

So there’s a lot going on in the person’s mind when they attend that first session.

There’s also often a large power imbalance (Joseph-Williams, Edwards & Elwyn, 2014). This emerges from the fact that often clinicians hold a lot more information about the person we’re seeing than they do about us. Especially after we’ve asked a bunch of questions, often quite intimate in nature. For a person seeking help, this imbalance can make it hard to ask questions, to direct the conversation, to hold a sense of independence throughout the encounter.

So having set the scene for you, I’m sure you can agree that how we go about collecting information from a person is incredibly important – especially so that relationship can begin to build.

Introductions

In the introduction, I seek to give the person some information about who I am – not just as a clinician, and the kind of treatments I use, but also about who I am. I’ve drawn inspiration from tikanga Māori here, where the cultural tradition entails letting the person know where I come from and who I’m connected to. I like to let people know my childhood roots are in Turanganui a kiwa, or Gisborne. That the mountain my heart connects with is Mount Hikurangi – the first mountain in NZ to see the sun. The river I connect with is the Taruheru, flowing into the sea in Gisborne. I also let people know my whanau connections – the Lennox’s, and the Thompson’s, are my whanau (extended family), and I’m a 5th generation New Zealander. I now live in Otautahi/Christchurch. This introduction only takes a few minutes, and your culture might not value this form of introduction. For me in Aotearoa/New Zealand, it’s one way I can show respect and follow a tradition that means the person I work with knows something more about me than just my name.

I also include my profession – what I do. I’m an occupational therapist, my job is to help people do what matters in their life contexts.

I like to then let the person know that they’re brave and courageous for seeking help – it’s not easy to say you can’t do this on your own. It takes courage to tell someone that.

Questions

Then I open with a broad question about what has led this person to come to see me. I might add in something about “tell me about your pain and what you’ve done so far for it.” I’ll often ask what their theory is about their pain, what they think is going on.

Then I ask “What is your main concern today?”

Throughout this process I’m reflecting what I’ve heard, to ensure I’ve understood what the person has experienced. I’m NOT giving reinterpretations, I’m NOT giving out new information, I’m just listening.

I often spend time asking about four areas of life: relationships, fun, work, and health. Or I might ask the person to take me through a typical day, from the time they wake up.

I like to find out not just what the person has done to help themselves, but also what they’ve learned from these experiences. The messages they’ve received over time, and the things they’ve tried but perhaps didn’t like or that didn’t help.

Questionnaires

I was a big fan of questionnaires filled out ahead of time, and I am still a fan but don’t use them as much. This is mainly because so many people have filled out endless questionnaires and nobody has sat down with them to talk about what they mean! So I’m a little more selective and focus much more on listening first then choosing something that will offer me and the person some insight into what might be going on. For example, I might choose the PASS20 (McCracken & Dhingra, 2002) because it helps me figure out where to begin with reducing pain-related anxiety. It’s a good measure to use each week to track changes over time, and I’m beginning to delve into repeated measures of progress rather than a pre-post-follow-up approach that’s typical.

Observation

Covid has meant it’s not as easy to carry out observational assessments, but I’m always watching how the person sits, moves, walks, and body language. What I’m not doing is interpreting these observations without talking to the person about them! Too many clinicians make judgements about the person based on maybe one or two observations, out of context of the person’s life and environment, and without checking in with the person to work out what might be contributing to what they see. Let’s not do that – the person might be completely oblivious that they’re guarding their sore hand, or they keep shifting in the chair, or that a habitual movement like taking a jacket off might be easier to do than being asked to perform some weird movement at the command of the clinician!

Pulling it all together

Just as we wouldn’t expect to be marched in for surgery straight after our first consultation with an orthopaedic surgeon, I don’t believe it’s OK to offer something to a person on their first visit just because we feel internal pressure to do so. Having said this, I will often suggest to the person that they spend a bit of time doing some brief “noticing without judging” exercises. We’ll give it a go at this first appointment, so they’re not being expected to go do it without knowing how. The reason I start with brief noticing experiments is that it’s something we could all do more often, it gives the person a new skill (usually) to develop, and it’s often an introduction to being fully present without judging. Being fully present without judging is hard to do when you’re sore because the mind likes to anticipate how bad it’s going to be (“you’ll need to take it very quietly or you’ll pay for it”) or remember previous pains (“last time you just sat around your pain went nuts, you don’t want to risk that now do you?”).

Notes/Documentation

I write conversational notes directly to the person, going through what we’ve talked about and pulling together all the information I’ve gathered in this first meeting. I find it helps me to make sense of what’s going on, it allows me some time to reflect on what I’ve observed and heard, and I can assemble it in a case formulation that the person and I can explore if/when we meet again.

Assessment is never over. Every time I meet with a person I’ll be learning more about what’s going on. I don’t feel pressured to “find it all out” at that first session just because there are goals that must be developed. In fact, one goal I leave in for everyone is “develop goals” (well, I don’t use goal language – it’s more about directions and actions that take you there). Because seriously, how can anyone meet someone and immediately develop goals – that’s disrespectful to the person who may not have had time to think about what matters the most, and it’s disrespectful to the complexity of goal setting as a process anyway.

Theme and variations

I’ve written one approach I use for learning about the person I’m trying to help. There are others – a time line, drawing a life map, mind-mapping, walking and talking, making a coffee – all of these and more can be used to explore the same information.

Let’s not call it “the subjective” – let’s call it what it is, our first “getting to know you” meeting.

Kirsch, I. (1985). Response expectancy as a determinant of experience and behavior. American Psychologist, 40(11), 1189–1202.

Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. Bmj, 348.

McCracken, L. M., & Dhingra, L. (2002). A short version of the Pain Anxiety Symptoms Scale (PASS-20): preliminary development and validity. Pain Research & Management, 7(1), 45-50.

Reidy, J., & Richards, A. (1997). Anxiety and memory: A recall bias for threatening words in high anxiety. Behaviour Research and Therapy, 35(6), 531-542.

Adam’s slow recovery


Not long ago I wrote about Adam Meakins back pain, and the astonishing response he’s had from fellow clinicians as he’s documented his recovery. Sadly, the polarised views of how therapists should approach a person with low back pain show me just how appallingly badly we adhere to low back pain guidelines… and worse, the kind of language and attitudes shown to a colleague who knows what he’s doing, demonstrates why change is so very slow.

What do I mean? Well, Adam has been following evidence-based low back pain guidelines that haven’t really changed a great deal since the advent of New Zealand’s “Yellow Flags” and guide to low back pain published waaaaay back in 1997. I’ve jumped to the NICE guidelines, as an example of one guideline, but you could look to many others.

NICE suggest these steps:

Assess for alternative diagnoses – in particular, “cancer, infection, trauma or inflammatory disease such as spondyloarthritis”

Risk assessment – basically, sorting people into those who are pretty OK with their pain, non-distressed and recommending those people receive “reassurance, advice to keep active and guidance on self-management.”

If Adam was distressed, or had a whole lot of risk factors for ongoing disability, then he might benefit from “more complex and intensive support for people with low back pain.” And yes, this mentions exercise programmes, manual therapy, psychological approaches.

Imaging – is not recommended, with imaging only used if the result is likely to change management.

Treatment – self-management, no orthotics or belts, no traction, and only offer manual therapy as part of an overall package that includes exercise.

No acupuncture, no electrotherapy.

Maybe use psychological therapies in conjunction with exercise.

Add in some NSAIDs

And don’t do much else…

In other words – exactly what Adam has been doing.

Why are there so many clinicians offering unsolicited opinions, without examining Adam, and without listening to his preferences, and without referring to the evidence?

What does this say about our clinical practice? What does it say about our confidence? What does it say about knowledge translation?

Most of all, what does this DO to the people we hope to help?

Seriously, folks. Watching the responses gives me nightmares.

I’ve been working in this field for 30 years now, and saying essentially the same thing about low back pain management for most of those years. I worry that an enormous business is built around scaring people, offering treatments with limited effect, for a condition that is common and responds well to doing normal movements.

In fact, one gripe I do have with the NICE guidelines is that they utterly and completely ignore daily life activities that a person needs to return to, and quickly. There’s nothing on managing sleep – and Adam’s described really rotten sleep until two days ago. There’s nothing on how to manage washing yourself, driving your car, sitting at a desk, doing the grocery shopping, preparing a meal, care for kids (or older parents) – absolutely nothing on the daily life activities that people need and want to do.

But, then again, I would say this – occupational therapists are the profession concerned about daily doing. The context of every day life. Knowledge translation from clinic/gym/exercise to what people actually do in their daily routines. It looks oh so simple – until you have to do it.

Back to Adam’s slow recovery. As I’ve watched Adam’s videos, I’m struck with the thought that many people just don’t know what to say – and so offer advice because that’s one way to deal with their own disquiet at helplessness. Clinicians, we need to develop better skills at managing our OWN emotional responses. We need to develop greater skills at sitting with our uncertainty. We need to stop leaping in with unsolicited advice that we offer just because we’re not comfortable doing nothing.

Could we just, for a moment, stop thinking about our reactions – and listen to what Adam (and I’m sure a whole bunch of our patients, too) says he wants? Listening means stopping that inner voice that’s got the “good” advice. It means really hearing what a person says. And only formulating a verbal response after we’ve digested the meaning the person is trying to convey.

Kia kaha Adam. You’re a brave man, a strong man, and I have much respect for you.

Knowledge gaps for working together


Whenever we work with someone living with pain, we form a team. A team, by definition, is “a distinguishable set of two or more people who interact dynamically, interdependently, and adaptively towards a common and valued goal/objective/mission” (Salas et al., 1992). So while many clinicians work outside an interprofessional team, they are always working in a team consisting of at least the person with pain, and themselves.

There’s a good deal of research on teamwork, and a heap of references in pain management literature on the benefits and, indeed, the need, to work in a team for best outcomes (both in terms of effects for the person and in terms of cost-effectiveness). Gilliam and colleagues (2018) demonstrate that long-term outcomes are retained by participants attending an interdisciplinary pain rehabilitation programme, while Guildford and colleaguees (2018) also showed reductions in analgesic use during an interdisciplinary pain management programme. It’s not new news folks!

Teamwork is well-investigated in health, particularly interprofessional/interdisciplinary teamwork. Much of this research, however, is focused on nursing and medicine interactions, with rather less attention paid to allied health and nursing/medicine teamwork. This matters because while nursing and medicine are moving away from the old medical model, the professions probably represent the two most similar in terms of clinical models. And this matters because one thing that’s found to be important for good teamwork in health is having a shared mental model (for example – from operation room – Wilson, 2019).

All good so far – nothing new here, move along, right?

Hold it right there, folks.

You see, when we work together in a team, particularly for people with persistent pain, we often generate a heap of new information about the person we hope to help. In New Zealand, the person will have completed the ePPOC set of questionnaires, then there will probably have been some physical performance testing, maybe some basic ROM, and muscle testing, perhaps some daily life functioning tasks, certainly some more psychological questionnaires, if the person sees a medical practitioner, there will be the obligatory bloods, urine, perhaps imaging – you know what I mean! A heap of information that each clinician deems necessary and I haven’t yet gone into each clinician’s desire to “hear the story from the beginning again!”

What’s lacking in our research on teamwork in persistent pain is discussion about how we assemble this information so that we move from a multidisciplinary team – Multidisciplinary teams involve people from different health disciplines working alongside one another while using clinical models drawn from their own professional discipline (Körner, 2010) – to an interprofessional/interdisciplinary team – Interdisciplinary teams also involve people from different health disciplines working alongside one another but meet regularly to collaborate on treatment goals and priorities (Ruan & Kaye, 2016). There is limited hierarchy and considerable communication, cooperation and often overlap between team members (Körner, 2010).

Not only a lack of a shared mental model (because we all think our model is The Best), we also lack an understanding of team processes. How do we develop an effective way to communicate, to cooperate, to deal with conflict in an open and creative way, to coordinate our work so things happen at the right time, to be coached so that the team-as-a-whole moves in the same direction and new people coming to the team feel part of the culture? Not forgetting that teams work in an ever-changing context, and team membership changes over time, while the overall team culture is something that emerges from a team collective (Salas, et al., 2015).

Are pain rehabilitation teams different from teams working in older person’s health, or palliative care, or as part of a primary health team?

I suspect so, but I can’t find good research detailing how our pain teams are different. It’s like a black box of mystery (a bit like interprofessional pain management programmes – one murky black box out of which a person pops!)

I’m left with this feeling that because teams in pain management and rehabilitation have become scarce in most part of the US, and that this is where all the research funding lives, there’s not very much that we actually know. We don’t know who holds the positions of power – is it the medical practitioner? the psychologist? the physiotherapist? the occupational therapist? Who makes the call as to when it’s time to work with the person to move from pain reduction to living well alongside pain? Are the team members actually using a common model or are they really working in parallel? And how can a team be maintained over time – I’ve had the privilege of working in a very close-knit and effective team for some years, but I’ve seen that team become smaller, fragmented, more multidisciplinary than interprofessional, with limited attention to processes of induction, developing effective conflict management, and really becoming weakened.

There is one conclusion I can draw from the mountains of material I’ve been learning and it’s this: it’s impossible to put a bunch of clinicians together and call them a team without putting effort in to develop those processes I’ve listed above. And when was the last time you attended a CPD session on “how to work in a team?”

Gilliam, W. P., Craner, J. R., Cunningham, J. L., Evans, M. M., Luedtke, C. A., Morrison, E. J., Sperry, J. A., & Loukianova, L. L. (2018). Longitudinal Treatment Outcomes for an Interdisciplinary Pain Rehabilitation Program: Comparisons of Subjective and Objective Outcomes on the Basis of Opioid Use Status. J Pain, 19(6), 678-689. https://doi.org/10.1016/j.jpain.2018.02.010

Guildford, B. J., Daly-Eichenhardt, A., Hill, B., Sanderson, K., & McCracken, L. M. (2018). Analgesic reduction during an interdisciplinary pain management programme: treatment effects and processes of change. Br J Pain, 12(2), 72-86. https://doi.org/10.1177/2049463717734016

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

Ruan, X., & Kaye, A. D. (2016). A Call for Saving Interdisciplinary Pain Management. J Orthop Sports Phys Ther, 46(12), 1021-1023. https://doi.org/10.2519/jospt.2016.0611

Salas, E., Dickinson, T. L., Converse, S. A., & Tannenbaum, S. I. (1992). Toward an understanding of team performance and training. In Teams: Their training and performance. (pp. 3-29). Ablex Publishing.

Salas, E., Shuffler, M. L., Thayer, A. L., Bedwell, W. L., & Lazzara, E. H. (2015). Understanding and Improving Teamwork in Organizations: A Scientifically Based Practical Guide. Human Resource Management, 54(4), 599-622. https://doi.org/10.1002/hrm.21628

Wilson, A. (2019). Creating and applying shared mental models in the operating room. Journal of Perioperative Nursing, 32(3), 33.

Not all pain is the same


When I started working in the field of persistent pain, many of the approaches used were based on the idea that every pain was the same. Oh yes, of course we had neuropathic pain and inflammatory pain, but our treatments tended to approach each person as if they were pretty similar. We later refined that approach and started to look at people in groups. In the service I worked in, we used the Westhaven-Yale Multidimensional Pain Inventory which generates three main psychologically-based profiles – and for a long time this was a very useful way of establishing who needed the three-week residential programme, and who would do well with a briefer outpatient programme.

Well things change over time, and we’ve become more aware of what Clifford Woolf describes as a “mechanism-based” classification approach (Woolf, 2004). In this approach, clinicians try to establish the dominant mechanistic group in which a person’s pain might be classified, then suit the treatment to that mechanism. This means clinicians diagnose inflammatory pain, neuropathic pain, and nociplastic pain – and use what looks like the best combination of medications to suit the mechanisms. For example, for neuropathic pain it’s more likely people will be given gabapentin/pregabalin and a tricyclic antidepressant in combination than an opioid.

There’s a problem, though – in fact, TWO problems I can see.

Methods for identifying pain mechanistic groups

The first problem is that we don’t have wonderful methods for establishing the main mechanistic groups.

In fact, in a recent very large and thorough review of methods used to discriminate between each category, the authors found that “few methods have been validated for discrimination between pain mechanism categories”, and although there was “general convergence” between methods, there was also “some disagreement” (not that this is unfamiliar to anyone who reads research!) Shraim, Masse-Alarie, & Hodges, 2021).

What was interesting, albeit not too unexpected, was the overlap of findings between categories because people present with mixed types of pain; and that many of the studies attempted to only discriminate between two of the groups, rather than more. Having said this, the authors identified five groups of method used to help clinicians and researchers distinguish between pain mechanisms: clinical examination; quantitative sensory testing; imaging; diagnostic and laboratory tests; and questionnaires asking participants to describe their experiences.

Now I know that research studies aim to be a little more rigorous than clinical practice, but that should sound an alarm when we begin looking at what we need to do in clinical practice. “Subjective” pain examination included aggravating and easing factors, pain location and pain characteristics (can anyone tell me when pain is NOT subjective?). It also included psychological factors (although my radar went off at this – more of this later!). Physical examination (is this supposed to be ‘objective’ pain examination?) included general clinical assessment, general neurological testing, nerve provocation testing and neurodynamics, clinical bedside somatosensory function testing, movement and functional testing. Quantitative sensory testing had no greater degree of sensitive, specificity and reliability than physical examination and “subjective” history, and laboratory testing was pretty poor despite superficially looking more “accurate.” A similar state exists for questionnaires – oh lordy!

So these authors found 200 methods that could be used to determine which pain fits into a specific box, but overall the results are pretty underwhelming for clinicians wanting a direction for their approach. It’s not helped that the current “gold standard” used is – wait for it – clinician-based diagnosis.

Where are we left? Well, I think we’re not that far away from where we were in the 1990’s and early 2000s. We really don’t have a clear way to distinguish between the various mechanisms, and many people likely present with pain that includes more than mechanism. However – these authors provide a table summarising the commonly used, and possibly most likely approaches to diagnose pain mechanisms, and this is useful for those of us who want the “best guess” for now.

Problem two

At the beginning of this piece, I said there were two problems with using mechanistic descriptors. You can see the problems with reliability, specificity and so on – and the lack of agreement in the research and likely “mixed” presentations we will see in clinic – from my comments above (do read the whole article, though, it’s well worth it).

The second problem is that these descriptors, even when accurate and reliable, don’t tell us anything about the person experiencing pain. Unless, and until we have effective treatments for each of these mechanisms, we are inevitably running experiments to see what might work for this person in front of us. And this means we find less utility in diagnosis than we would if we drew on a case formulation approach.

What’s the difference? Diagnosis allows us to group “like with like” – on the basis of similar underlying mechanisms. We can then treat those mechanisms, and voila! the person recovers! It works well with fractures, with infectious diseases, and even with diabetes. It doesn’t work as well when we don’t have treatments we can use on the mechanisms. For example, although we can diagnose many neurological disorders, for so many of them we have very poor treatments. This means people live with their disease – and this is where a diagnosis falls down. It does not tell us HOW this person will experience their disease. Diagnosis doesn’t explain illness, disability, functional status, or participation.

And, because all of us are unique, this means that a one-size-fits-all approach to persistent pain (or even an algorithm, subtype, or subgroup) isn’t likely to offer clinicians or the person with pain a useful path towards well-being.

You’ll remember I said my radar went off with the psychological assessments included in the methods used to identify a pain mechanism. My reason is this: pain is a stressor. Even a paper-cut captures my attention (albeit just a little until I use a hand sanitiser!), my heart rate goes up a bit, I’m alerted to the experience and want to get away from it. Now imagine if that pain continued. Maybe variably, maybe constantly, maybe intermittently. And imagine if I couldn’t get a good understanding of what’s going on. And perhaps I was being questioned by my clinicians – and maybe even stigmatised. “What do you mean, you have pain we can’t diagnose, we can’t image, we can’t treat?” I’m guessing by now, perhaps some months after my pain started, I’d be feeling a bit irritated, perhaps a bit low in mood, my sleep might not be great, I might find it hard to do what matters to me because I’m not sure if I’m doing myself some harm.

What we don’t know in many studies of pain “predictors” is whether they are cause or effect. There is undoubtedly an association between various measures of pain-related anxiety, avoidance, low mood, thinking the worst. What we do not know is whether this was present before the pain came on – or whether it came afterwards.

So, to my mind, using psychological factors as part of diagnosis risks labelling people and what are probably normal responses to abnormal experiences. Let’s not do that.

Where am I left after reading this paper? I’m glad someone set about doing this review. I think it offers a good summary of the state of play, and identifies some of the current problems with a mechanistic approach. We need to get consensus on definitions, we need far better methods, we need to stop using the word “subjective pain examination” (because ALL pain is subjective), and we need to leave psychological factors out of diagnosis until we can clearly identify which came first.

Shraim, M. A., Masse-Alarie, H., & Hodges, P. W. (2021, Apr 1). Methods to discriminate between mechanism-based categories of pain experienced in the musculoskeletal system: a systematic review. Pain, 162(4), 1007-1037. https://doi.org/10.1097/j.pain.0000000000002113

Woolf CJ. Pain: moving from symptom control toward mechanism-specific pharmacologic management. Ann Intern Med 2004;140:441–51.

Self-care


No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

Pain model – helping to target change


In my recent post on behavioural approaches to pain management, I had a number of commentators ask why do it, why not focus on pain intensity, and aren’t I invalidating a person’s experience if I target a person’s response to their experience. Today’s post will explore some of these points.

I suppose my first point needs to distinguish between pain as an experience, and pain behaviour – or what we do when we experience pain. I like to use a pretty old “model” or diagram to help untangle these concepts. It’s drawn from Loeser’s “Onion ring” model, and he wrote about this way back in the early 1980’s. This is my interpretation of that way of thinking about the person experiencing pain. It’s not intended to represent Truth – but to help us to get our heads around an individual’s truth, or their experience. It’s one way to consider the factors we’ve learned are associated with human pain. It should be evaluated in terms of its utility and practical usefulness for a person experiencing pain, and for clinicians hoping to help them.

The “BIO”

Firstly, we have all the neurobiological processes involved in transmitting nociceptive information throughout the body. Much of this information never reaches conscious awareness – activity in nociceptors occurs all the time, and we have rapid reflexive responses to this such as blinking, shifting in a chair, swaying while standing and so on. A whole lot of neurobiological activity occurs as this information reaches conscious awareness – much of this activity occurs above the brainstem. In fact, if we look carefully at neurobiological activity, much of the reason we never notice reflex responses to nociception is because we have a pretty effective inhibitory system that’s operating constantly to limit how much nociceptive activity hits consciousness. That’s all part of cortical and brainstem (yeah – BRAIN) processes. If anyone learns neurobiology of pain and doesn’t include attention, motivation, emotion, expectations then they’re missing an enormous chunk of what nociception and pain are about.

Added to this neurobiological information are another whole bunch of physiological and hormonal responses – and these are incredibly complex and often omitted from our discussions. For example, men and women differ in their hormone production, and this means more women experience persistent pain, women have lower pain tolerance, and respond to nociceptive information more quickly and at lower thresholds than men.

Suffice to say, there are a whole bunch of biological processes that are integral to our experience of pain and to nociceptive transmission, transduction and perception. So if anyone should suggest that a “biopsychosocial” model of pain does not include BIO – go wash your mouth out please.

Pain-the-experience

The next aspect of pain that Loeser included was “pain-the-experience” – the subjective, personal, unshareable “what it is like to experience pain” part. This encompasses the qualia – the sensory qualities of pain, and includes intensity and location. Pain is always experienced as having a negative or aversive quality, so we know that the urge to avoid or take action to reduce, and indeed our tendency to attend to this experience is part of a human experience of pain. Note that Loeser (and I) don’t include appraisal at this point! In other words, this is the “ouch” that a baby feels when we perform a Guthrie heel prick test. It’s that moment when scalding coffee hits your lap, before you’ve realised you’ve spilled your coffee.

But just to complicate things here – unless we’re newborns, we’re always aware of context and pretty much once we learn language, we’re interpreting when/where/how/why events are happening. This means that factors such as expectations, past learning, predictions we make about “what next” always inform “pain-the-experience”. Even before we’re consciously aware of these influences! So technically, as soon as we recognise “ouch” we’re already invoking a whole bunch of higher cortical processes into our experience. This matters because pain is a conscious experience, and requires perception before it can be experienced.

Judgement or appraisal

The next “ring” of Loeser’s model was called “suffering” – I’ve translated this into a cognitive process of “appraisal” because while pain is inherently tainted with negative emotional valence and a motivational urge to avoid, it’s also possible to view our experience of pain in different ways. Some commonplace examples are the jab from a vaccination – many of us will welcome that nociceptive input, and judge the pain to be negligible. Others who may be less comfortable with a vaccination might view it more negatively and be more aware of that pain. People who run or train in a gym might appraise the pain from working hard “feel the burn” as a sign that they’ve done enough to make performance gains. And some of us who live with persistent pain such as fibromyalgia might notice pain and consider it to be “just a nuisance”.

Suffering is an interesting concept, and I prefer to take Erik Cassel’s definition of it: suffering refers to the loss of a sense of self. A paper cut typically doesn’t lead to a loss of sense of self, while low back pain that remains for many months might be far more likely to erode that sense of “who I am and what I can do”.

Judgements and appraisals are influenced by a whole lot of factors – socio-cultural norms (I’m in a rugby-mad country, if a rugby player experiences pain on the field, he or she may well grit teeth and keep going, believing that it’s not OK to “give in” to pain – the appraisal might be “this isn’t so bad, I can still keep going”. Socio-cultural norms are often implicit – we absorb them effortlessly within our own cultural context, and we’re quite capable of holding different implicit norms depending on our current proximity to our social group. Consider the rugby player who will brush off an on-the-field injury but when getting a splinter might feel a little sick. The meanings we attribute to our pain influence how willing we are to go with them – tattoos and body piercings and body suspensions are really good examples of times when we’re OK to experience pain in the pursuit of something else, similarly post-surgical pain after joint arthroplasty.

When appraisals are unhelpful is when we get tripped up. When a person holds an inaccurate understanding of what’s happening – thinking, perhaps, that this back pain is a sign of cancer metastasising, or the end of a career as a sportsman, or an indication of some dire outcome, then a couple of things happen. Firstly, negative emotions are likely to rise, along with sympathetic arousal (the two systems are linked in the experience of pain), and then what we do about pain also begin to turn to short-term over long-term outcomes.

Pain behaviours

Pain behaviours are what we do when we experience pain, and they’re shaped both by evolution and by socio-cultural norms, as well as what we think is going on. I wrote about pain behaviour recently – click

Pain behaviours are the only part of “what it is like to experience pain” that we can observe.

Let me say that again – what we do about pain is the only part of the pain experience that a person who is NOT The Person In Pain that we can share.

Pain behaviour includes everything a person does and says in relation to their pain, both reflexive and automatic actions that we’re not aware of, as well as those we are aware of. Some of the behaviours we do are reflex responses (blinking and tearing up), some of them are not. Some of them are well-learned – we’ve been doing them since we were tiny kids. Others are things we’ve learned to do, perhaps on the advice of someone else, or because we’ve observed someone else, or because we think it might help or it’s worked once before.

The thing is – pain behaviours are malleable. They can and do change. Again, read my earlier post on how pain behaviours can be changed, and know that just because a behaviour has changed, the person’s experience of pain may not. In other words, while I move pretty normally, and to many onlookers I don’t appear to have pain – I still do.

Social context

I’ve already alluded to the influence of contextual factors. Things we’re aware of – prevailing attitudes in our immediate social group, our community, our spouse, our treatment providers. Things we’re often less aware – of implicit attitudes about gender, ethnicity, socio-economic status, supposed pain mechanisms, visibility of tissue damage and so on. And we are ALL influenced by these implicit socially constructed attitudes and beliefs, people with pain and their clinicians and their families and their communities….

I often use this way of exploring factors involved in why a person is presenting in this way at this time, and what might be done to reduce distress and disability. I might package the conversation in various ways – perhaps more complex if I expand on some aspects, perhaps less so if the person doesn’t want or need to explore something (often this is the neurobiological part). While it’s imperfect remember that the purpose of a model like this is contextual. I am not hoping to represent Truth as a universal law about “how pain works”. I AM hoping to explore useful elements for a particular purpose. One purpose might be to demonstrate that emotions and appraisals influence pain behaviour. Another might be to introduce medical students to the complex factors that might be involved in their interpretation of a patient’s distress. And another to help someone understand why he avoids a movement in one context but not in another. And even another might be to help someone know why she has such a panicky feeling when she’s in the middle of a flare-up.

As a pragmatist, and basing my practice on approaches that might help this person achieve a specific something in this moment, I use models like these to build therapeutic alliance, to enable the person to be willing to play with new ways of being, and to help them recognise that the target for change might not be what they initially think is relevant.

Loeser, JD. (1980). Perspectives on pain. In P. Turner (Ed.), Clinical Pharmay & Therapeutics (pp. 313-316). London: Macmillan.

Loeser, JD. (1982). Concepts of pain. In M. Stanton-Hicks & R. Boas (Eds.), Chronic low back pain (pp. 145-148). New York: Raven Press.

Modifying pain behaviour (1)


In my post last week I talked about pain behaviour and why pain behaviours are often a good treatment target in pain rehabilitation. I also talked about pain intensity rating scales and how, because rating scales are a form of communication, the numbers we obtain from them aren’t a true measure of pain: they reflect what the person wants to communicate about their pain to someone at that time and in that context.

This week I want to discuss modifying pain behaviour, and believe me, we are all in the business of modifying behaviour even if we think we’re doing something completely different!

Ethics

One of the issues about modifying behaviour is addressed right at the beginning of Fordyce’s chapter on “Techniques of behavioral analysis and behavior change” and this is the ethical issue of informed consent. It’s important because behaviour change using behaviour modification techniques can operate without the person’s awareness (and does so All The Time). As clinicians, though, we have an obligation to ensure we obtain informed consent from our patient/client before we embark on any treatment. Of course, you and I know that this doesn’t happen in the way that I’d like to see it! When I’m a patient, I’d like to have my options laid out in front of me, with the pro’s and con’s over both short and long term clearly explained. Then I can choose the option that I prefer. But actually, most of the time I’ve received treatment from any clinician, I’ve been given little or no information about alternatives – it’s been assumed that I’ll go along with what the clinician has chosen for me. How’s that for informed consent?

Back to behaviour change. Fordyce clearly details the approach he prefers which is clear discussion with the person about what is proposed – that “well” behaviour will be reinforced via social interaction and “praise”, and “unwell” behaviour will either be ignored or redirected.

Behaviour change done badly

Where I’ve seen behaviour modification done badly is where the clinician fails to indicate to the person that this is the approach being taken (ie no informed consent), where this is applied to all people irrespective of their treatment goals and without discriminating the types of behaviours to be modified, and where it’s applied without empathy or compassion. The kind of “one size fits all” approach. More about this in a minute.

Fordyce points out that “almost every behaviour change problem can be analysed into one or a combination of these three possibilities: 1) Some behaviour is not occurring often enough and needs to be increased or strengthened; 2) some behaviour is occurring too frequently and needs to be diminished in frequency or strength or eliminated; and 3) there is behaviour missing from the person’s repertoire that is needed and that therefore must be learned or acquired.”

Behavioural analysis (lite – more to come in another post!)

So we can work out which behaviours to focus on, as clinicians we need to do some behavioural analysis. This is often best carried out by observing the person – best in his or her natural environment because the contextual cues are present there – but at a pinch, in a clinic setting. I like video for analysing behaviour, particularly something like limping or guarding or compensatory movements, but larger repertoires of behaviour can be self-reported. For example, if someone recognises that they’re resting more often than they want (especially useful if the person values returning to work), then the person can time how long they rest for and work to reduce that time. Fitness trackers or movement trackers can be great for monitoring this. Other options include asking the person’s family about the particular behaviours they notice as indicators that the person is having trouble with their pain: people around the person with pain often know what’s happening well before the person has said anything!

Now this raises my earlier point about lacking empathy or compassion. It doesn’t feel normal to ignore someone who is wincing, looking “pained” or talking about how much they hurt. And this is why, I think, many clinicians don’t enjoy using behaviour modification in a deliberate way – it either feels unsympathetic, so we avoid it, or we do a 180 turn and we apply “ignore all pain behaviour” indiscriminately. Fordyce definitely did NOT suggest this!

Being human in behaviour change

So, how do we approach a person who is distressed? Do we ignore them or comfort them or what? In true time-honoured tradition, I’m going to say “It depends.”

First, we need to analyse the function of the distress in this context, and in the context of our treatment goals. Remember informed consent! We need to clearly articulate and obtain agreement for our behavioural target, and if someone is distressed and this isn’t our target, then we need to respond in an empathic and supportive way. If we’ve observed, however, that the person we’re working with is often distressed as we begin a new activity, perhaps one that pulls the person towards doing something unfamiliar or a bit scary, then we might have a conversation with the person about what we’ve seen, and with agreement, begin to modify our response.

When I describe “function” of distress in this context, I mean “what does the distress elicit from us, and for the person?” – what are the consequences of that distress for the person? If we reduce our expectations from the person, or the person avoids doing the new activity, then we can probably identify that the distress is functioning to reduce the demands we’re putting on the person. Our behaviour as a clinician is being modified by the behaviour of the person – and probably unwittingly. Reducing demands reduces anxiety, a bit, and it may be anxiety about doing that movement (or experiencing pain as a result of doing that movement) that’s eliciting distress. I wouldn’t say being distressed in this context is deliberate – but it’s functioning to draw us away from maintaining the treatment goals we developed with the person.

So what can we do? In this instance, we might remind the person of our agreement to stick to our plan of activity, we can acknowledge that they’re feeling anxious (that’s probably why we’re doing this activity in the first place!), we can reassure the person that we trust that they can do this (boosting self-efficacy via verbal encouragement), and we can maintain our treatment goal.

That’s hard!

Yep. Using this approach is not for the faint-hearted. It means we need to be observant, to always be thinking not just about the form of behaviour we’re seeing, but about its function. We need to monitor our own behaviour (verbal, facial expressions, subtle body shifts, all the non-verbal “tells” we make), and we need to change our own responses to what the person does. And often we find this self-awareness difficult to do. Most of our responses are “automatic” or habitual, and behaviour modification means we need to interrupt our habitual responses so we can help our patient/client do what matters to them.

For a brilliant description of Fordcye’s approach as applied in a case study, Fordyce, Shelton & Dundore (1982) is a great example of how a seriously disabled person was helped via this approach. Remember, this was carried out with the person’s full consent! Chapter 4 of Fordyce’s Behavioral Methods for Chronic Pain and Illness gives the best blow-by-blow description of how to go about this. And for a rebuttal to some of the criticisms of a behavioural approach to pain management, Fordyce, Roberts and Sternbach (1985) offer some very helpful points. That paper also offers some of the best analyses of pain behaviour and why it’s needed as part of pain rehabilitation.

Fordyce, W. E., Shelton, J. L., & Dundore, D. E. (1982). The modification of avoidance learning pain behaviors. Journal of behavioral medicine, 5(4), 405-414.

Fordyce, W. E., Roberts, A. H., & Sternbach, R. A. (1985). The behavioral management of chronic pain: a response to critics. Pain, 22(2), 113-125.

Pain behaviour: what is it and what do we do about it?


I’m re-reading Fordyce’s classic Behavioral Methods for Chronic Pain and Illness and once again I’m struck by how many of the concepts he introduced and systematically investigated are either mis-interpreted and ignored in our current approaches to helping people with persistent pain. Today I’ll explore just a tiny portion of what Fordyce described.

Pain behaviour refers to all the observable actions we do in relation to experiencing pain (NB some people include thoughts as well, but for today I’ll just focus on observable actions). There are roughly two groups of actions: those involuntary ones that we can call nocifensive responses that include reflex withdrawal underpinned by spinal reflexes but including brainstem circuits (see Barik, Hunter Thompson, Seltzer, Ghitani & Chesler, 2018); and those that are developed and shaped by learning (operant conditioning as well as social learning).

When I write about learning, I often have comments about this suggesting people have a choice about what they do, and that this learning must involve conscious awareness – the upshot of these comments is the idea that if we just tell someone that they’re doing something, information alone will be sufficient to change how often they’re doing it. Well, I don’t know about you, but if you’ve ever chewed your nails, changed your diet, decided to go on a social media diet, or do more exercise, you’ll know that there’s an enormous gap between knowing about and being able to follow through. So let me review some of the processes involved in learning and pain behaviour.

Pain behaviour probably has evolutionary significance. What we do when we’re sore acts as a signal to others, whether those actions are voluntary or involuntary. For example, while limping off-loads weight from the sore limb, it can also function to let other people know there’s something wrong. Groaning or sighing also lets people around us know that we’re not OK. Remembering that we’re a social species, being able to let others know that we need help – or not to do what we just did – means we’re more likely to receive attention, and also to warn others about potential danger. Of course, by eliciting help, we’re kinda obligated to help others when they do the same, which may be why when we see someone demonstrating prolonged pain behaviours we tend to feel annoyed: we might be asking ourselves “If they’re not going to reciprocate, why would I help? Dem’s the rules”

Now pain behaviour is also subject to learning principles. In other words, the specific behaviours we do develop in form and frequency depending on context. The underlying analysis goes like this: an antecedent is present (maybe it’s a particular person, location, or occasion), the behaviour occurs, then something in the environment/context occurs – and it’s this “something in the environment/context” that influences whether the behaviour is repeated, and/or the frequency of that behaviour. The easiest example of this is when you watch a three-year-old playing just a little distance from Mum and Dad. When she trips and falls, she’ll probably get up and brush herself down – and then you’ll see her look for Mum or Dad, and if they’re close enough, she’ll probably let out a bit of wail. In the context of Mum and Dad and her falling over, she’s learned that if she cries she’s likely to get a cuddle or some attention, and this is nice. In the absence of Mum and Dad, if she trips she’s less likely to cry because she’s not likely to get that cuddle. Clever huh?

So if that kind of learning occurs from the time we’re little, it’s easy to see how rapidly this pattern of behaving can become habitual, and when it’s habitual it’s unlikely to be something the child is aware she’s doing. Crying, or seeking attention, when we’re sore is something we’ve learned to do from an early age and while the form of that attention likely differs as we mature, the underlying mechanisms still apply (please don’t scream the place down when you go get your Covid vaccination! It’s OK for babies to cry, but not quite so socially appropriate for grown-ups to cry!).

How does the form of that behaviour change? It’s called “shaping” and it is something that occurs naturally through social learning, and it can also occur in a planned way. Take the example of the three-year-old falling and crying: crying is probably OK outdoors where there’s plenty of room and not too much attention being paid to the interactions between parents and child. Take that same behaviour indoors, perhaps in a supermarket or worse – a quiet waiting room – and it’s likely the parents will shush the child more quickly, and be a little more firm about any ongoing wailing. The context is different, the parents respond differently, and the child learns that it’s not OK to cry loudly where there are other people who might not approve. Over time children learn that in different contexts, different ways to attract attention are required. Clearly there’s more technical language we can use to describe this process, but for our purposes this is enough.

Why do we care about this?

Pain behaviour is normal. It’s something we all do. Mostly it functions in a positive way. We signal to others that we need help, we protect the sore body part, and gradually we recover and resume normal life. In some contexts, though, the tendency to continue doing pain behaviours outlives its welcome. In persistent pain it’s particularly problematic, but it’s also problematic in acute pain situations.

Let’s take the example of the dreaded pain rating scale. The 0 = no pain to 10 = most severe pain I can imagine scale. In the context of an emergency room, being asked to rate pain is a quick and very practical way for clinicians to decide how severe the presumed injury/tissue damage is, whether the person needs analgesia, and whether they’re responding to it. Give a number less than 3 or 4 and you’re probably not going to get a lot of pain relief. Give a number closer to 10, and you’ll get something. Give a number greater than 10 and you may get raised eyebrows. In an experiment by Herta Flor (Flor, Knost & Birbaumer, 2002), participants were given an electric shock and asked to rate their pain intensity (also nociceptive detection threshold (aka pain threshold) and pain tolerance). After they’d rated their pain over several trials, they were given one of two conditions: one in which they were given smiley faces and money when their rating was higher than their average rating for the previous trials, and one in which they were given a sad smiley when their rating was lower than their average. Flor and colleagues found that those people who had been given positive smiley faces for higher pain ratings rated their pain intensity significantly higher than those who had been given neutral or negative smileys.

This experiment doesn’t reflect changes in pain intensity. And this is a critical point to note! The stimuli were the same across both groups. What changed was the response offered to participants after they rated their pain. In other words, behaviour associated with experiencing pain and the resultant rewards given for higher ratings was reinforced.

This experiment, along with a large number of others, is one reason why I don’t like pain intensity measures being taken at every treatment session. Pain intensity ratings are behaviours subject to the contingencies that all behaviour is subject to – people learn what to do, and they do it. And they’re unaware of this process.

We often rely on pain intensity ratings in both experimental studies and clinical practice. Unfortunately, while a numeric rating scale or visual analogue scale are quick and dirty, they’re not like a pain thermometer. We just don’t have an objective measure of pain intensity. And we forget this.

Where am I going with this?

A couple of points. I don’t think we can always influence a person’s experience of their pain. This means that we’re often needing to influence what they do about it – because prolonged distress and disability is not good for anyone. Given the social nature of our species, and the involuntary nature of our response to another person’s distress, we’re inclined to try to reduce distress by offering comfort. Nothing wrong with that except where it gets in the way of the person beginning to do things for themselves. As clinicians we need to reinforce actions a person does to increase their capabilities. We also need to limit our reinforcement of illness behaviour, and we need to do this with the consent of the person – being open about why we’re doing this. Remember people learn this stuff without knowing they’re learning it! This means that as clinicians we must stop judging people and what they do in response to pain. Pain behaviour is learned over a loooong time, and it’s reinforced in so many places. People don’t do pain behaviour on purpose. So we can’t judge people as being “non-copers” or having “exaggerated illness behaviour” – we can just gently show the person what happens, why it happens, and what the effect of that pattern of behaving is having on their life.

The second point is that we can’t treat pain ratings as Truth with a T, and think that we’re getting a pure measure of pain intensity – because rating pain on a scale is a behaviour, and it’s influenced in exactly the same way as all behaviours are. This doesn’t mean ignoring someone’s pain intensity – it just means we need to listen to what the person is trying to communicate.

Barik, A., Thompson, J. H., Seltzer, M., Ghitani, N., & Chesler, A. T. (2018). A Brainstem-Spinal Circuit Controlling Nocifensive Behavior. Neuron, 100(6), 1491-1503 e1493. doi: 10.1016/j.neuron.2018.10.037

Flor, Herta, Knost, Bärbel, & Birbaumer, Niels. (2002). The role of operant conditioning in chronic pain: an experimental investigation. Pain, 95(1), 111-118. doi: https://doi.org/10.1016/S0304-3959(01)00385-2

Musing on “the social” in pain rehabilitation


What do we think about when we consider “the social” as a factor in pain rehabilitation? Do we think of socioeconomic status? Maybe employment status? Perhaps societal attitudes towards pain and recovery? Do we ask if the person has someone they trust in their life? Maybe we even discuss how a relationship is going, whether the person sees their friends and family?

Have we forgotten that possibly the most potent influences on pain behaviour are the people around the person we’re seeing?

It will be no surprise to anyone reading my work over the past 10 or more years (yes, really! it HAS been that long!) that I love reading older pain theorists, researchers and historic approaches to pain. We can learn so much from the pioneers in this area – people like Waddell, Loeser, Main, and Fordyce. While some of the details of theoretical advances may have been superseded, the ideas they promoted remain as potent as ever.

Fordyce, in particular, attracts my interest. Bill Fordyce was a clinical psychologist who pioneered behavioural approaches to reducing disability for people living with persistent pain. Rather than offering repeated surgeries or medications, Fordyce looked to how what we do (behaviour) is reinforced by people and situations around us. From his work, we learned about activity pacing (decoupling the relationship between activity and pain by adopting a quota-based approach to activity), time contingent medication (using medications according to a time schedule rather than “as needed”), and we learned a great deal about how other people’s responses to an individual’s behaviour could inadvertently increase or reduce the frequency of that behaviour.

Why is this important? Well, aside from the way pain behaviours develop from childhood (crying? Mama will cuddle you. Want something? Cry – and Mama will cuddle you), responses from a person’s partner will likely influence both verbal complaints and physical movements (pain behaviours) such as grimacing, bracing and guarding, and in surprising ways. In fact, in an electronic diary study where people with chronic low back pain and their partners (who had no pain) were asked to record responses five times a day for 14 days, researchers found that when a spouse observed their partner’s pain behaviour at one time, they’d be more likely to be critical or hostile towards that person at a later time. If the spouses believed that the person with pain was “trying to influence their feelings” at the first observation, their responses were more likely to be critical or hostile – and it was the attributions made by partners that mediated between pain behaviours and the subsequent criticism leveled at the person (Burns, Gerhart, Post, Smith, Porter, Buvanendran, et al., 2018).

The so what question is sure to come up for some people. Why do we care? It’s not like we can do anything about this, is it? Well… you know me – writing about this stuff isn’t just for fun! The first thing to know is that if something is influencing a person’s behaviour and especially their disability, rehabilitation professionals should be aware of it. Relationship “stuff” is part and parcel of rehabilitation because it’s part of the person’s context. Secondly, it’s not about judging whether this is good, bad or indifferent – it’s about recognising an influence on the person and considering how we might support that person to respond in a way that enhances their recovery. Finally, we need to recognise how behavioural expressions and responses to them influence us. An earlier study by the same researcher (Burns, Higdon, Mullen, Lansky and Wei, 1999) found that expressions of anger and depression by the person influenced the therapeutic alliance with the health professional and this was perceived both by the person and his or her therapist.

Should we, can we do anything to help?

First, to the “should.” Whether we like it or not, these influences are occurring – so they are having an effect anyway, and both on us and the person we’re working with. We are also constantly influencing our patients because we’re inherently social animals. It’s just that we’re probably oblivious to our influence, and consequently are likely to react rather than respond. While I don’t advocate clinicians who haven’t undertaken specific training in relationship work to begin “therapy”, there are some basic things we can and I think, should, do. We should because we’re already influencing anyway – so let’s do something helpful.

The second is, can we do anything to help? Well, yes – because as I’ve said above, we’re influencing anyway. Everything we say and do will likely influence the person we’re seeing and possibly their partner and family.

The first thing we can do is let the person we’re working with know that what they say and do influences the people around them. This might be a revelation to some! We can let them know that this communication is not deliberate, and neither is the interpretation by the partner. It’s part of being human and social.

The next thing we do is offer some information to the person and their partner. Preferably written or video – something that the person can share with their partner. This information should be about the nature of persistent pain (in particular), and that a person’s pain behaviour is unintentional. In other words, that what a person does is explicitly not intended to make the partner “feel bad for them” (ie garner sympathy – in fact, quite often it’s the opposite of what the person really wants!); that they’re not intentionally wanting to avoid doing something; and finally, that they’re not intending to “give in to the pain too easily”.

Another thing we can share with the person and their partner is that because pain is personal and internal, openly communicating about what’s going on is important. None of us are good at mind-reading! The responsibility for obtaining help has to be with the person living with pain, not the person who is observing. This might mean the person with pain needs to think about what they want their partner to do. Often it’s nothing – no fuss, no molly-coddling (been dying to use that word for a while!). But if the person does want something, it’s really good to be specific and clear: “I can’t lift this, can you give me a hand”. This doesn’t mean taking over, BTW!

Where possible, I think it would be great to ask partners and family to be involved in rehabilitation. I wonder at insurers who don’t allow partners or family/whanau to be involved in rehabilitation. I think it’s detrimental – because increasingly, we know that the social context of daily life is such an important influence on disability. Asking partners to be part of rehabilitation might be a bit easier under “lockdown” conditions in many countries at the moment, but even without these conditions, perhaps recording selected parts of sessions, even having a meeting (virtual or face-to-face) might allow partners to be part of their loved one’s rehabilitation journey.

Burns, J. W., Gerhart, J., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., . . . Keefe, F. J. (2018). Spouse Criticism/Hostility Toward Partners With Chronic Pain: The Role of Spouse Attributions for Patient Control Over Pain Behaviors. J Pain, 19(11), 1308-1317. doi: 10.1016/j.jpain.2018.05.007

Burns, J. W., Higdon, L. J., Mullen, J. T., Lansky, D., & Wei, J. M. (1999). Relationships among patient hostility, anger expression, depression, and the working alliance in a work hardening program. Annals of Behavioral Medicine, 21(1), 77-82.

Bias: Is pain all the same?


The topic of how we define pain, and how humans respond to pain has come up for me as I mull over the IASP definition of pain. The current (new) definition is this:

An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.

Six key notes:

  • Pain is always a personal experience that is influenced to varying degrees by biological, psychological, and social factors.
  • Pain and nociception are different phenomena. Pain cannot be inferred solely from activity in sensory neurons.
  • Through their life experiences, individuals learn the concept of pain.
  • A person’s report of an experience as pain should be respected.
  • Although pain usually serves an adaptive role, it may have adverse effects on function and social and psychological well-being.
  • Verbal description is only one of several behaviors to express pain; inability to communicate does not negate the possibility that a human or a nonhuman animal experiences pain.

Now, for me the definition works fine – definitions describe and establish boundaries around what is being defined. Definitions don’t have to include all the uses of the term but instead just have to be distinct and clear, to “express the essential nature of something” as Merriam-Webster puts it.

Alongside this definition are notes about the function of pain – in other words, the notes (but not the definition) attempt to indicate why we experience pain. ‘An adaptive role‘ – in other words, pain serves a purpose in most cases and it may have adverse effects.

The question that leaps out to me now is what is the adaptive purpose of pain? This is the question that vexes many commentators who really don’t like the idea of what one author has called “maldynia“. Maldynia is thought to be “bad pain” that is severe, disabling and long-lived. I’m not fond of the word, but I do think there are pains that are not “adaptive” and these are amongst the ones that puzzle us the most in clinical practice. Things like phantom limb pain, nonspecific low back pain, complex regional pain syndrome and dear old fibromyalgia.

Back to the adaptive purpose of pain. Right now I have a cracked area on my heel. It’s quite a deep crack and it hurts every time I put my foot down. The way I’m using that information (the ‘ouch’) is to notice that yep, the crack is deep and there is tissue damage. And I am doing something about it by looking for urea-based cream and covering it while I work in the garden. I’ve (1) noticed tissue damage; (2) recognised that I need to do something about it; and (3) from experience, know that it will settle down and no longer be painful once the tissues have healed. I’ll also take care in the future to treat my heels so they remain soft as a baby’s bottom.

The metaphor of pain as an alert and action prompt serves quite well for me at the moment. And in most cases this is how we experience pain. Another example: I burned my thumb and finger on a soldering iron recently – you bet that hurt! I let go of the soldering iron PDQ, soaked my thumb and finger in cold water, then covered them until they had healed. The pain I experienced settled down after a day or so (unless I held a hot coffee cup!), and the new skin was a little tender for a couple of weeks. Again – pain served a purpose to alert me to stop doing dumb stuff, to protect the area, and to learn not to grab hold of the wrong end of the soldering iron! The metaphor of pain as an alert, call to action and learning experience again worked pretty well.

Now over the last few years I’ve had shoulder pain, imaging showed a bit of an enlarged bursa, a tiny fragment of calcification. This pain hasn’t settled down, even after I had cortisone injection AND did all the movement stuff including strength (yes – I did strength stuff!). Where oh where is the purpose or function of pain in this instance? Pain is not serving me well – I’ve been alerted, I’ve acted on that alert, nothing has changed and the metaphor breaks down.

But let’s take a look at the notes from IASP again – “Although pain usually serves an adaptive role” – usually. Usually. So there are times when pain does not serve an adaptive role. I think my shoulder pain, my groin pain, and my neck and back pain (yep, good old fibromyalgia) does not serve a function. I can’t think of any utility in having a grumpy body that really gripes about doing everyday movements like getting dressed, standing up from a chair, turning to look our the rear window of my car while I reverse down the driveway or aches in different parts of my body on different days then moves somewhere else at random.

A hidden assumption of the pain definition notes is that the “adaptive role” is reserved for those with a normally functioning nervous system, and where pain is associated with nociceptive activity, or inflammation. What if a nerve itself is damaged? What if the spinal cord is diseased or traumatised? What if there are changes to the way the nervous system processes information (we have that in every other sensory process, and in every other body system)? The experience of pain remains the same – still the same old aching, burning, gnawing, stinging sensations and the “ew”, “I don’t want this”, frustrating, totally unpleasant sensory and emotional experience as defined. The adaptive function, however? Not present.

The thing is, while I focus on persistent pain, most pain by far is not ongoing. I expect my heel crack to heal and the pain to go, and my now-slightly scarred finger and thumb are fine now.

Yes, the epidemiology of persistent pain shows that the prevalence of pain that goes on for more than three months is between 13–50% of adults in the UK. Of those who live with chronic pain, 10.4–14.3% were found to have moderate-to-severe disabling chronic pain (Fayaz, Croft, Langford, Donaldson & Jones, 2016). Similar findings for New Zealand – 16% of NZers live with pain lasting three months or more.

But given I think most of us will hurt ourselves at least once this year (especially with the lockdowns and stress of COVID19 and the economy and elections…), this means that more often than not, our experiences of pain are the acute kind. The ones that do alert us to notice what’s happening in our body, to take some kind of action, and to learn something useful from this experience.

So, while the metaphor of an alarm, alert, “danger signal” or “bear” or “beast” doesn’t hold up for all of our pain experiences, on the whole, it works. And the purpose of metaphor is “a way of conceiving of one thing in terms of another, and its primary function is understanding” (Lakoff and Johnson, 2003). Ultimately, we use metaphors like these to generate a sense of purpose for an experience that is commonplace, and the most common pain we have is a short-term, temporary one. Let’s not let my bias towards persistent pain lead me astray.

Fayaz A., Croft P., Langford R., Donaldson J., Jones G. Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open. 2016;6

Lakoff G, Johnson M. Metaphors we live by. Chicago: University of Chicago Press, 2003:36.

Merskey H., Bogduk N., editors. IASP task force on taxonomy, Part III: Pain Terms, A Current List with Definitions and Notes on Usage. IASP Press; Seattle, WA: 1994. pp. 209–214.