Your patient has psychosocial risk factors: what now?

Congratulations! You’re an insightful clinician who’s offered your patient a screening assessment to find out if she or he has psychosocial risk factors – and yes! they do! Well done. Now what?

Do you…

• send your patient to the nearest psychologist?
• spend at least one treatment session offering pain neurobiology education?
• scramble to find a “psychologically informed physio” to send them to, because it takes really highly trained and special clinicians to work with these people
• give your patient the same exercise prescription you were going to anyway because, after all, they still have things going on in their tissues (or is it their nervous system? I forget – whatever, they just need to move, dammit!)
• throw your hands up in horror and say “I never wanted to deal with people in pain anyway!”

You’d have to be hiding beneath a rock to avoid learning that people with musculoskeletal pain with psychosocial risk factors such as feeling that back pain is terrible and it isn’t going to get better, believing that it’s not safe to move or exercise with back pain, having worrying thoughts going through their mind, or not enjoying things very much should have special attention when they seek help for their pain. And we’ve all read studies showing that many of our frontline clinicians who see people with musculoskeletal pain aren’t comfortable, confident or clear about what to do with people who are, frankly, scared and distressed.

Papers like Caneiro, Bunzli & O’Sulllivan’s (2021) Masterclass clearly show that messages people with pain get told include avoiding certain movements to prevent damage, being advised that special exercises ‘protect’ the body, and that clinicians believe that certain postures and movements are inherently unsafe (bending, lifting with a rounded back). At the same time, Sajid, Parkunan & Frost (2021) found that only 11.8% of people referred by GPs for musculoskeletal MRIs had their mental health problems addressed, while only 16.7% of the MRI results were correctly interpreted by GPs and in 65.4% of cases were referred for “spurious overperception of surgical targets.”

Worse, Nicola, Correia, Ditchburn & Drummond (2021) conducted a systematic review of the effects of pain invalidation on individuals – invalidation from family, friends and healthcare individuals, and the person themselves. They found five themes: not being believed, lack of compassion, lack of pain awareness and understanding, feeling stigmatised and critical self-judgement. Perceived social unacceptability of experiencing pain was found to have an impact on the emotional state and self-image of those with persistent pain. Ya think?!

If I return to the case I presented last week, Angelina, a pretty common case of someone with a neck pain who is having trouble sleeping and generally handles her pain independently, we could assume that she doesn’t have significant psychosocial risk factors. After all, she’s managing to stay working, does a bit of self-help, and she’s not depressed though she’s a bit irritable.

What would you do?

I guess my first thought is: would Angelina even get a screening assessment to see whether she has any psychosocial risk factors? Might she present superficially well enough for her therapist to think she’s fine, let’s just treat the neck?

Of all the neck pain treatments available, what would she be given? And what might she be told about the rationale for that treatment? A recent systematic review with meta-analysis pointed out that while specific exercises helped in the short to medium term, the quality of that evidence was low (Villaneuva-Ruiz, Falla, Lascurain-Aquirrebena, 2021), while a systematic review with network meta-analysis of 40 RCTs found “There is not one superior type of physical exercise for people with chronic non-specific neck pain.
Rather, there is very low quality evidence that motor control, yoga/Pilates/Tai Chi/Qigong and strengthening exercises are equally effective.” (de Zoete, Armfield, McAuley, Chen, & Sterling, 2020).

More than this: would her sleep and relationship concerns be discussed? What about her safety while driving? How about how she manages her work, and her belief that perhaps her pain is happening because of a period at work where she wasn’t positioned “correctly”?

You see, at the moment in our musculoskeletal treatment literature, the focus has been almost entirely on grouped data. And this, folks, is where Steven Hayes points out that the ergodic theorum is violated. Ergodic theory is “…the idea that a point of a moving system, either a dynamical system or a stochastic process, will eventually visit all parts of the space that the system moves in, in a uniform and random sense. This implies that the average behavior of the system can be deduced from the trajectory of a “typical” point. Equivalently, a sufficiently large collection of random samples from a process can represent the average statistical properties of the entire process.” (I stole that from https://en.wikipedia.org/wiki/Ergodicity).

Hayes, Hofmann & Ciarrochi (2020) point out that “We cannot assume that the behavior of collectives (e.g., a volume of gas) models the behavior of an individual element (e.g., a molecule of gas) unless the material involved is “ergodic” and thus all elements are identical and are unaffected by change processes.” Humans are not ergodic (only a few noble gases are…) and what this means is that “statistical techniques based on inter-individual variation cannot properly assess the contribution of given elements to phenotypic change.” In other words: humans actively respond and change to what they’re exposed to – each of us presents to treatment with our own incredibly unique range of responses and past history, and these influence how we respond to a treatment. And perhaps this explains why most of our treatments (RCTs, using grouped data and uniformly applied and consistent treatments) particularly for persistent pain problems end up showing pretty small effect sizes. We’re violating the assumptions of the ergodic theorum. What we need are more sophisticated ways to analyse the impact of any therapy, and far fewer algorithms and cookie cutter treatments.

Where does this leave us? I have loads of ideas about where to from here, but not nearly enough space today to write about them!

My first suggestion is to avoid blindly following a treatment algorithm that fails to support YOU to sensitively and reflexively offer treatments that fit for your patient.

My second is to avoid measuring the impact of what you do only at the end of treatment (or worse, not at all!). Measure often, and measure things that matter – either to how you get to the end outcome, or that the person values. Or both.

And third: Get reading outside of your profession. Dig into psychology (I especially recommend Hayes); look at sociology (try Jutel); anthropology (try Sarah Pink’s “Sensuous futures: re-thinking the concept of trust in design anthropology”); make 2022 the year that you lean into uncertainty. I know the past two years have been incredibly unsettling – but this is the perfect time to continue on this journey into new ideas, fresh concepts, and ambiguity.

Caneiro, J. P., Bunzli, S., & O’Sullivan, P. (2021). Beliefs about the body and pain: the critical role in musculoskeletal pain management. Braz J Phys Ther, 25(1), 17-29. https://doi.org/10.1016/j.bjpt.2020.06.003

Nicola, M., Correia, H., Ditchburn, G., & Drummond, P. (2021, Mar). Invalidation of chronic pain: a thematic analysis of pain narratives. Disability and Rehabilitation, 43(6), 861-869. https://doi.org/10.1080/09638288.2019.1636888

Sarah Pink (2021) Sensuous futures: re-thinking the concept of trust in design anthropology, The Senses and Society, 16:2, 193-202, DOI: 10.1080/17458927.2020.1858655

Sajid, I. M., Parkunan, A., & Frost, K. (2021, Jul). Unintended consequences: quantifying the benefits, iatrogenic harms and downstream cascade costs of musculoskeletal MRI in UK primary care. BMJ Open Quality, 10(3). https://doi.org/10.1136/bmjoq-2020-001287

Villanueva-Ruiz, Iker, Falla, Deborah, Lascurain-Aguirrebeña, Ion. (2021) Effectiveness of Specific Neck Exercise for Nonspecific Neck Pain; Usefulness of Strategies for Patient Selection and Tailored Exercise—A Systematic Review with Meta-Analysis, Physical Therapy, 2021;, pzab259, https://doi-org.cmezproxy.chmeds.ac.nz/10.1093/ptj/pzab259

de Zoete, R. M., Armfield, N. R., McAuley, J. H., Chen, K., & Sterling, M. (2020, Nov 2). Comparative effectiveness of physical exercise interventions for chronic non-specific neck pain: a systematic review with network meta-analysis of 40 randomised controlled trials. British Journal of Sports Medicine. https://doi.org/10.1136/bjsports-2020-102664

Making first contact: What to do with all that information! Part 4

In the previous few posts on what to do with all that assessment information I’ve talked about generating a formulation to guide treatment, and a little about how teams might work together to generate one. This post is a little different because I want to situation the discussion around the ultimate aim of therapy.

I usually work with people who have long-standing pain that hasn’t changed much and doesn’t seem to be disappearing. I’m not a nihilist, but I do wonder if clinicians are trying too hard to “change pain” when the body doesn’t seem to respond all that much to whatever we offer when it comes to musculoskeletal pain! Perhaps all we do is offer support to the person as their body gets on with the job of settling down…?

Anyway, my focus is to help people respond flexibly to what life has thrown at them – because while pain poses one of the greatest problems for people, often it’s not the pain as such but what we do to avoid or control pain – or, for that matter, what we do to avoid or control the results of avoiding or controlling pain. Confused? Let me unpack it a little with an example.

About the time I started this blog wayyyyy back in 2007 I had a concussion and developed post-concussion syndrome. I found it incredibly difficult to concentrate, find words, remember things, switch my attention from one thing to the next, and to deal with sensory overload. I was advised to rest and let my brain recover in its own time – all good. BUT I never expected that recovery to take almost two years! so I returned to part-time work after two weeks. In my head I was balancing my fatigue/headache/difficulty concentrating against my need to return to work, keep my employer happy, and do things that mattered.

If I flip that motivation on its head, I wanted to control both my symptoms and my fear/guilt of failing and perhaps losing my job/fear of sitting still and doing nothing/fear of feeling useless. After all, I was the vocational rehabilitation therapist for the service I worked in!

By trying to control my fear of not doing, I created a whole bunch of trouble for myself – I failed at controlling my symptoms – they grew out of hand and I eventually had to take some time off work, got quite depressed, and achieved exactly what I’d hope to avoid – needing to stay at home doing nothing!

When we think of ACT (Acceptance and Commitment Therapy) for living with pain, we often think of the person working hard to control or avoid pain and our focus is on helping them to be willing to make room for pain and begin doing things – and yet I’ve met a great many people who have got caught up in a vicious cycle of over-doing and under-doing, or who “get on with it” with gritted teeth and sheer determination! So one thing we can be looking for in our “first contact” is to identify how workable are the ways the person is approaching this time in their life, a time when they’re dealing with pain and life restrictions, stress, balancing priorities, working, family and so on.

ACT provides a series of six processes that together offer a way to be flexible about how we handle what life throws at us, and help us do what matters in our life. In an ACT formulation, we’re looking for unhelpful patterns that constrain how flexibly we can do what matters. Some of the patterns we might see could be:

1. Unwillingness to stop and create space for pain so the person gets stuck acting as if there is no pain, trying to do everything the same way as normal but either getting fatigued and stressed and just hanging on in there, or doing short bursts of “normal” and crashing periodically.
2. Getting stuck with rigid beliefs about what’s going on like thinking the pain must be able to be fixed and quickly, or that the pain is the most horrible disaster ever and everything about life must be shelved until it’s fixed.
3. Comparing what he or she can currently do against a previous level of performance and being frustrated and angry because this doesn’t fit with how they see themselves, and especially thinking that this is the way it’s going to be forever…
4. Losing sight of important things like being with family, or seeing friends because of feeling irritable, sad, thinking they don’t want to see them like this, not being able to do the things they used to do, waiting for the pain to reduce, or looking for the fix.
5. Anticipating calamity or remembering disasters either about “the last time I tried doing this” or “because I saw this happen to [name]” and then feeling utterly stuck.
6. Casting about being erratic or just not sticking to a plan, getting off track maybe because results don’t happen, or maybe because it’s something new and feels unfamiliar, or perhaps because someone else suggested another option…

There are always other ways people respond to pain, not just the patterns I’ve listed here, but these are some common ones I’ve seen. In ACT we’re looking for unworkable patterns that don’t lead the person towards being the kind of person they want to be, doing the things that bring meaning in their life.

When I’m jotting these things down, I’m looking to identify the core things the person isn’t willing to experience: thoughts, emotions, memories, situations. I want to understand what the person does to avoid them – like things the person has stopped doing or deliberately avoids, the ways the person avoids or controls emotions associated with that thing (like drinking more alcohol, zoning out, lashing out), and what I observe during our initial assessment like skipping over topics that feel uncomfortable.

I want to understand the cost or “unworkability” from the person’s perspective: what’s the impact of responding in these ways. I need to understand what’s going on in the person’s context – their family life, employment situation, influence of case manager or insurance/compensation, friendships. And I want to look at the factors that might be adding to the person’s inflexible responses, and these are myriad and often include what we do as clinicians – like being told to stop doing a favourite hobby “because it might be damaging” (how many people with low back pain have been told to stop running, stop fishing, stop dancing, stop lifting, to sit in a certain way, walk in a certain way, lift in a certain way, stop slouching, walk faster, slower…?). And of course I want to understand a person’s strengths: have they had an experience like this before? Do they have strong values? Have they succeeded in some area in life? What brings them joy and takes them into the zone? How have they modified the way they do things so they can do what matters?

I like to do this in collaboration with the person (how else could I do it?!) and to look at the good and not so good of everything they’ve done along with the context. Because one thing that always resonates with me is that people do what they do because it’s worked in the past. Always. At least once.

For more on ACT, you can’t go past the Association for Contextual Behavioural Science – https://contextualscience.org/

And Chapter 2 from Lance McCracken’s book Mindfulness and Acceptance in Behavioral Medicine, 2011, Context Press, New Harbinger:

Vowles, K.E, & Thompson, M. (2011). Acceptance and Commitment Therapy for Chronic Pain, pp31 – 60.

Making first contact: what to do with all that information! Part 3

In my last post I described the “4 P” model (sometimes called the 5P!) of formulation for pain. In today’s post I want to talk about an integrated approach for a team.

Teamwork in pain management is an enormous thing – IASP (International Association for the Study of Pain) endorses multidisciplinary (I prefer interprofessional) teamwork but gives little information on how teams best work together. In fact, research exploring teamwork processes in pain management is remarkably absent, even though there’s considerable research elsewhere in healthcare showing that effective teamwork is quite distinct from being an effective solo clinician. The processes of coming together, learning about one another and what each person and profession contributes, learning how to make decisions, how to negotiate differences of opinion, to trust one another: all of these have been explored in other health settings, but not in pain management ones. This matters because of all the areas in healthcare, pain management presents us with the most complex inter-related problems where the model of pain adopted by a team must be consistent or the person with pain will likely feel utterly confused.

’nuff said. Let’s take a look at a team mental model of pain, because this is where learning from one another and across professions becomes “live”.

The basic assumption for the whole team must be that pain is a multifactorial experience, influenced by (broadly) biological, psychological and social elements. In other words, a team won’t work well if some of the members think that pain can be “fixed” by addressing only one piece of the puzzle. Even in acute pain, the team needs to recognise that what a person believes is going on, the meaning they draw from the experience, the influence of others (the family, hospital staff, community) will make a difference to the person’s distress and disability. Context always matters and people always bring their previous experiences (either personal or drawing from what they’ve seen/heard from others, including media) with them when they’re in pain.

If the team takes this idea on board, then the weight that’s placed on the various factors contributing to distress and disability should be equal, at least initially. For example, although anxiety might be a key influence in one person’s pain experience, this shouldn’t be valued above possible biological factors. Each contributing factor needs to earn its way into the overall formulation, and it’s only from reviewing the formulation as a whole that it’s possible to determine where to begin with treatment.

This sounds complicated – and it can be in some cases! But it is really a mindset rather than being horribly complex. If we hold each piece of the puzzle lightly, look to the relationships between each piece, then we can begin to see how one factor influences another. And teams can, if they share their ideas, put the pieces together much more effectively than any single person can – even the person with pain.

Yes, the person with pain IS part of the team – always. How else will the team know they’ve been effective?

Teams form a mental model of what each other knows, what the team (as a whole) thinks matters, and who in the team might offer the mix of skills the person needs. This mental model doesn’t happen instantly: you can’t put six clinicians in a room and an hour later expect them to have a common understanding of pain, each other, and what the team can do. There’s good research showing that teams need time together – even virtual teams (Maynard & Gilson, 2021) – and that frequently changing team members reduces the teams’ effectiveness (Bedwell, 2019; Williams & Potts, 2010). Mental models emerge as teams share knowledge – the problem is that group members often share knowledge that is common, rather than unique information that could be the linchpin to an effective decision (Levine, 2018).

In my experience, and reading through an enormous amount of research, the most commonly adopted model in persistent pain management is a cognitive behavioural approach. Now this is not “CBT” the therapy, but instead an approach that recognises:

• People are active processors of information and not passive reactors.

• Thoughts (e.g., appraisals, expectations, and beliefs) can elicit and influence mood, affect physiological processes, have social consequences, and also serve as an impetus for behavior; conversely, mood, physiology, environmental factors, and behavior can influence the nature and content of thought processes.

• Behaviour is reciprocally determined by both individual and environmental factors.

• People can learn more adaptive ways of thinking, feeling, and behaving.

• People should be active collaborators in changing their maladaptive thoughts, feelings, and behaviour. (Turk & Flor, 2013)

We might disagree on how these points might be operationalised, and treated, but a team should have something like this as a critical understanding of how the factors influencing a person’s distress and disability might fit together.

I’ve written plenty of times about the formulation approach that I’ve often used – here and here – and I’ll show you another ACT-based formulation next week. In the meantime, perhaps it’s time to consider how well you and your team know one another, and consider whether you have enough trust in one another to debate issues (not people), bring unique information (rather than shared), and collaborate rather than compete?

Bedwell, W. L. (2019). Adaptive Team Performance: The Influence of Membership Fluidity on Shared Team Cognition. Frontiers of Psychology, 10, 2266. https://doi.org/10.3389/fpsyg.2019.02266

Levine, J. M. (2018). Socially-shared cognition and consensus in small groups. Current Opinion in Psychology, 23, 52-56. https://doi.org/10.1016/j.copsyc.2017.12.003

Maynard, M. T., & Gilson, L. L. (2021). Getting to know you: The importance of familiarity in virtual teams. Organizational Dynamics, 50(1). https://doi.org/10.1016/j.orgdyn.2021.100844

Turk, D. C., & Flor, H. (2013). The Cognitive-Behavioral Approach to Pain Management. In S. B. McMahon, M. Koltzenburg, I. Tracey, & D. C. Turk (Eds.), Wall and Melzack’s Textbook of Pain (6 ed., pp. 592-602). Saunders. https://doi.org/10.1016/b978-0-7020-4059-7.00043-7

Williams, A. C., & Potts, H. W. (2010). Group membership and staff turnover affect outcomes in group CBT for persistent pain. Pain, 148(3), 481-486. https://doi.org/http://dx.doi.org/10.1016/j.pain.2009.12.011

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.

Thought experiment: Would therapists be out of a job if we could “fix” persistent pain?

Every few years someone, somewhere, announces that “it won’t be long before we have a treatment to rid the world of persistent pain.” And there’s a hiss and roar to celebrate this momentous finding, and much ado about how wonderful it will be.

I’m still waiting. BUT I thought it might be an interesting thought experiment to wonder what might happen if a “cure” was available for fibromyalgia.

As readers will know, I have lived with what eventually was named “fibromyalgia” since my early 20’s, and probably longer. I’ve dabbled in various treatments over the years but sadly, nothing but good clean living has helped (by which I mean early to bed, good diet, maintain healthy movement, manage stress, have good friends to connect with, play, have fun). So I would dearly love a treatment that would remove the constant aching, reduce the prolonged DOMs, keep a lid on delayed recovery after injury, and generally offer me a life relatively “normal.”

I am definitely pro-pain reduction and pain treatment. I just haven’t found anything that changes mine.

We have had some spectacular developments in therapies over the past 25 years – particularly in the inflammatory rheumatological diseases like ankylosing spondylitis, rheumatoid arthritis and ulcerative colitis. Treatments with anti-TNF alpha biologicals means that my partner who lives with anky spond now has normal C reactive protein levels, no pain, the disease activity has stopped, and he’s tickety-boo.

So why am I just a tad reserved about the notion of a “fix” based on new discoveries about mechanisms associated with neuropathic and nociplastic pains? Why am I just a little skeptical of a new psychological study showing outstanding results (Ashar, Gordon & Schubiner, 2021)? Am I just worried I’ll be out of a job if there’s an effective treatment?

Nope.

You see, even though some people like my Manly Jack have had a wonderful response to treatment for inflammatory disease, there are many more who have not. Or, who have significant reductions in inflammation – but not to “normal” levels, and accompanied by complications/adverse effects, and, in many instances, continued pain. Why is that? Well – I think it’s because while treatments target mechanisms, people are enormously variable in both biology and more importantly, psychology and sociology.

And it’s these last two that have been identified as amongst the most important contributors to ongoing disability and limited participation.

Now the social deserves a little attention. Drug developments are not cheap. The medication my partner uses is extremely expensive – NZ$1200 every two weeks. Luckily for us, this drug is fully funded by the NZ Government. There’s an economic argument for having meds like these publicly funded – without this drug, it would have been very difficult for my man to carry on working. He was having trouble rolling over in bed at night, had trouble coughing, couldn’t inhale fully, and walked like a little old man. He’s now fit as a buck rat and pays his taxes because he’s working.

The problem is, as we can see from the Covid vaccination roll-outs world-wide, people and countries without resources have less access to effective treatments. Even in NZ where we don’t have the “vaccine hesitancy” of other countries, the people who are least likely to be vaccinated right now are those who have trouble traveling to a centre, who don’t feel “at home” in healthcare, who are hard to reach, perhaps not very literate, don’t speak English or te reo Māori. The NZ government is working incredibly hard to ensure the vaccine is given to these people, and I’m proud of the variety of ways they’re doing so.

But spare a thought for countries where there is no relative affluence. Where other countries don’t have the will to help. Where infrastructure is poor. Where women, children, and people from different cultural backgrounds or religions are discriminated against. In these countries, vaccinations are very slow to reach those in need.

So one risk from a fancy new treatment is that people who need it but can’t afford it, don’t trust healthcare (who would after the stigmatisation so many people receive?), and people who are from countries where the rest of the world doesn’t help out – they risk missing out.

Another risk is that while pain might be reduced or even eliminated, these address only the biology, and people are people, and pain is multidimensional. People remember what it was like to be in pain. People have their own narratives about what’s going on to create their pain. We all learn from our experiences, and beliefs, attitudes, emotions, the influence of others around us, the communities and families and workplaces we come from, all of these have an effect on “what it is like to be experiencing pain.”

We know that people who have completely successful joint replacements without pain, don’t resume the activities they were doing before their joints became painful (see my last blog post). People successfully treated with biologicals still hold fears about future harm that developed before they got their treatment. We know that many people take years before being diagnosed and treated successfully – and that’s a long time to develop beliefs, habits, routines and relationships that don’t support recovery. We also know the trauma of unhelpful and stigmatising healthcare interactions can live long, even after successful care.

Resuming daily life and valued activities is integral to pain rehabilitation. Helping people safely do what matters to them in their life contexts is still needed. In the enthusiasm for applauding treatment advances, we need to remember that people are more than the sum of their diagnoses, more than their biology, and our societies are not fair.

Ashar YK, Gordon A, Schubiner H, et al. Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial. JAMA Psychiatry. Published online September 29, 2021. doi:10.1001/jamapsychiatry.2021.2669
h ttps://jamanetwork.com/journals/jamapsychiatry/fullarticle/2784694?fbclid=IwAR23strMuoUXYs_Ae9EmTVz9eNAzYxgxAR1IBj64SePpbWeLQL_M_DOaXr8

One plus one may not always equal two

If it hurts – take notice, and avoid it. Learn from it. If there are other people around, make sure your behaviour is noticeable so they take care of you and don’t do what you just did. If they look after you, you’ll probably do the same thing again when you hurt, if they don’t you probably won’t.

This is one description of pain behaviour and how it works. It’s the only part of our pain experience that we can share directly with one another (actions and words). The “doing” part is also the part that is most affected by pain – even distress is signalled to others – so it’s unsurprising that a lot of attention has been paid to how therapists can change behaviours that are unhelpful.

Many of us start with offering an explanation. Language is something that sets humans apart from other creatures because we learn concepts, and associate one concept with another through it (see Beeckman, Hughes, Kissi, Simons & Goubert (2019) for excellent insights into relational frame theory and pain). I’m sure there are many clinicians who’ve tried to give information (to “educate”) to a person and found it works well. And then there are those who just don’t get it. There are three main points that people who respond well to “education” seem to find useful: (1) pain doesn’t mean my body is damaged (the old “hurt does not equal harm” message that originated with Fordyce. Butler (2017) offers us a selection of Fordyce’s wisdom – and wit); (2) thoughts, emotions and experiences affect my pain (again, something the cognitive behavioural therapists have been sharing with people since the beginning of multidisciplinary pain management programmes); and (3) I can retrain my over-protective nervous system (yes, another thing we’ve been doing in pain management for many years… not that we are unlearning pain, we’re helping the nervous system settle down and becoming less distressed by the experience).

We quite like talking to people – maybe because it appeals to our often dictatorial mind (read A Liberated Mind for a new take on this!). And so for people experiencing pain, we talk. But talk on its own isn’t super-effective. After all, for every one time we hear “pain doesn’t mean my body is damaged” we can Google and find literally hundreds of messages telling us our spine is fragile, our joints are damaged and pain is a sign there is harm.

So what is more potent than words? It’s learning by experience. Doing.

A brand new analysis of “sufficient conditions” for psychological therapy was published in Pain (Batho, Kneale, Sutcliffe & Williams, 2021).

Now I do have some reservations about calling this “psychological” because that word is loaded with meanings, not all of them helpful. Truth to tell, we humans use psychological approaches effortlessly in daily life – and it’s not “in the head/mind/emotions” which is almost inevitably what people first think of when they hear it…

In this analysis (which is complex – go read the paper!), the authors investigated 38 studies, did some horrendous statistical analysis and compared the ten most effective treatments with the ten least effective treatments. What they found was quite surprising, and I’m still pondering what it means.

They established that “interventions using graded exposure, graded exercise or behavioural rehearsal (exposure/activity), and interventions aiming to modify reinforcement contingencies (social/ operant) reduced disability levels when either approach was applied but not both.” [italics mine] They also found “exposure/activity can improve distress levels when combined with cognitive restructuring, as long as social/operant methods are not included in treatment.” [italics mine]

It pleased me to find that graded exposure or reactivation, when applied in the absence of social and operant contingencies, reduced disability and distress. And that social/operant approaches reduced disability on its own. The reason I’m happy is that graded exposure and reactivation with a dab of “let’s notice your thoughts and check out whether they’re helping you” are very common approaches used across occupational therapy, physiotherapy, chiropractic, osteopathy, coaching and a whole bunch of therapists who work with people in pain. Graded reactivation with information has been the mainstay of pain management since at least the 1980’s. We know it’s helpful. Graded exposure has gained popularity since the mid-1990’s and we know that it’s helpful too. And we use social reinforcement just because we’re humans.

In the analysis, ACT was used in only one study. ACT doesn’t do cognitive restructuring and instead, uses six interwoven processes that together support psychological flexibility. I use ACT as my primary approach, both for myself in daily living, and with people who come to see me for help with their pain.

What I like about ACT is that it’s flexible, allows people to notice what their mind tells them, but helps them to step back from that dictator within to make a choice about what to do. It’s the doing part (based on what matters in a person’s life) that I enjoy because it involves both graded exposure and graded reactivation. And if a person doesn’t relate to what they’ve been told about their pain, we don’t have to offer another explanation, we can help the person work out what works for them in the context of their own life.

So where are we with this now? Given that we can’t stop being social animals, and that we respond to one another without knowing it, I’m not sure we can avoid inadvertently using social and operant approaches as therapists. What we can do, though, is become more knowledgeable about behavioural approaches in pain management and rehabilitation – and that undoubtedly means learning a whole lot more psychology. Perhaps we might need to reframe our own understanding of psychology so we feel more comfortable with it – a bit like explaining pain and cognitive functional therapy have both helped us feel OK to step into doing what has often been the territory of psychologists.

Batho, A., Kneale, D., Sutcliffe, K., & Williams, A. C. C. (2021, Oct 1). Sufficient conditions for effective psychological treatment of chronic pain: a qualitative comparative analysis. Pain, 162(10), 2472-2485. https://doi.org/10.1097/j.pain.0000000000002242

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

Butler, S. (2017). The wit and wisdom of Wilbert (Bill) Fordyce (1923-2009). Scandinavian Journal of Pain, 16(1), 160-163.

Leake, H. B., Moseley, G. L., Stanton, T. R., O’Hagan, E. T., & Heathcote, L. C. (2021, Oct 1). What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education. Pain, 162(10), 2558-2568. https://doi.org/10.1097/j.pain.0000000000002244

When living with pain is too hard

**If you’re a person living with pain, and this headline caught your attention because you’re feeling it’s just too hard to carry on – PLEASE take a moment to seek help. If you’re feeling you can’t because they might judge you, or try to stop you feeling this way, at the very least give yourself an hour before you take any action. If that feels too long, give yourself a minute. Get through that, and give yourself another minute. And so on – until you’ve give yourself some time to let this awful feeling ease up a little. You can always revisit your decision to wait. Speak to someone – anonymously if you need to. There are helplines in every country. Phone one. Please.**

Living with persistent pain can be really hard, and clinicians, family and the person with pain can be worried about suicidal thoughts and possible actions. There’s good reason to be concerned, too, as a recent study from the 2012 Canadian Community Health Survey shows.

Grocott, Sommer and El-Gabalawy (2021) used the data obtained from this Canadian Health Survey to explore the relationships between pain intensity and suicidality in people with arthritis, migraines and low back pain.

The first question is how many people in the overall population involved in this study had any of the three diagnostic groups – and, as expected and in line with many epidemiological studies, between 10.3% (migraines) and 18.1% (low back pain) indicated they had been diagnosed. The “usual” pain levels across all three groups were between 25.9 – 27.7% indicating their pain was “mild”, 52.5 – 54.5% said it was “moderate”, and 19.7 – 20.9% described it as “severe”. This does not surprise me one bit – moderate levels of pain intensity are really common, and, albeit acknolwedging the difficulty of rating pain intensity on a numeric scale and the complex relationship between pain intensity and interference with daily life, demonstrate just how necessary persistent pain services are as a health services priority.

The team then identified the rates of “lifetime” suicidality – these were measured using the following questions.

“you seriously thought about committing suicide or taking your own life” (i.e., suicide ideation; yes, no), “you made a plan for committing suicide” (i.e., suicide plans; yes, no), or “you attempted suicide or tried to take your own life” (i.e., suicide attempts; yes, no).

It’s important to note that this question asked about whether the person had ever, during their life, had these thoughts – not that they were currently present. Remember this as you interpret this study, because suicidal thoughts are relatively common but acting on those thoughts is less common.

The authors found that people who were usually in pain were more likely to have suicidal thoughts, plans or had made an attempt than those who had periods of time without pain (ie intermittent pain). The different rates were reasonably large, too – just in terms of ideation, between 18.7 – 34.0% of people who were usually in pain had suicidal thoughts as opposed to those with intermittent pain (10.5-16.6%), and this association was particularly strong for people with migraine. For people with low back pain, having pain all the time was associated with much greater odds of suicidal thoughts (1.79, 95% CI [1.19-2.68], p<.05).

Pain intensity was also a factor – lifetime suicidality prevalence increased as pain intensity increased, and this was relevant to all pain conditions measured, and especially amongst people with severe pain and migraines.

A good question to ask is whether the odds were the same for people with current mental illness as for those without – and using the magic of statistics, the authors found that this only held for some forms of pain. People with arthritis (note they didn’t identify the kind of arthritis people had) reported lower levels of suicidality even in the presence of mental ill health.

The authors point out that this is an interesting study in that yes, suicidality was higher in people with migraines, and similar to other studies, but their intriguing finding was that differences in the intensity of usual pain increased the odds, along with elevated odds if people reported higher levels of pain intensity.

Why did I choose to summarise this paper?

A few reasons: one is that as health professionals, we may not be aware of just how many people in our communities live with pain. It’s a lot – and this study only included specific diagnoses. Yet, at least in New Zealand, pain management services for people with pain are scarce.

Most people in New Zealand will maybe get referred to a physiotherapist, but it’s often difficult for people with persistent pain to raise their issues with pain with their health provider and for those providers to respond with empathy (Thompson, Dowell, Hilder, Macdonald, Stubbe & Alchin, 2021). This means that many people may not be seen by clinicians with confidence to help people with psychosocial aspects of their pain (eg Holopainen, Simpson, Piirainen, Karppinen, Schutze, O’Sullivan & Ken, 2020, Zangoni & Thompson, 2017) if they even indicate that this is a concern for them during the consultation.

Another reason is that many clinicians who work mainly in “physical” health may not know what to do if someone does disclose suicidal thoughts. It is confronting to hear someone say they don’t want to live any more – and knowing what to do next can feel highly risky. How does this fit within my scope of practice? What if I say something wrong and the person goes ahead and attempts suicide?

Note though, that this study didn’t look at current levels of suicidal thought – it’s lifetime prevalence. Perhaps people who have had occasion to think about killing themselves have a greater degree of vulnerability for persistent pain, particularly when pain is intense. We don’t know – but the authors speculate. Worth reading the paper in full to find out their thoughts.

My thoughts (briefly!) are:

• Prepare ahead of time. We’ll all likely encounter a person who is really distressed, at the end of their tether, and indicates they’re thinking of harming themselves. Being prepared makes responding to this situation much easier.
• Preparation should include writing a policy for your practice or your setting. It should include a list of people to contact in a psychiatric emergency (when a person indicates they’re ready to take action to harm themselves), as well as specific actions to take when talking to the person.
• We’re not all psychologists and it’s not our job to be psychologists – all we’re asked to do in this kind of situation is be a human. What I mean by this is – listen, affirm that the person is feeling really bad and support them to access the help they need. This might mean calling the psychologist if you have one you work with regularly, or calling the person’s family doctor, or calling psychiatric emergency services.
• Ensure you hand the person to someone who will take care of them. This means not letting them go off in their car without letting their family doctor know, even if they say they’re fine. For your own reassurance this is important.
• Take care of yourself. Don’t just go on to see the next person waiting for you. Take some time to process what’s happened, what you did, and debrief with someone you trust. It doesn’t need to be a trauma counsellor – it’s just as useful to talk to your colleagues who know you and the kind of work you do. Go have a cup of coffee, go for a walk, give yourself space to recognise that you just helped someone who was really distressed. That’s an important job.
• Don’t ignore the person and pretend they didn’t just say that. Affirm that they’re feeling rotten. Don’t trivialise it and suggest they should just harden up, or it’s not really that bad, or that they’re at fault for feeling this way. Just be gentle and human, and recognise the privilege you have – this person trusts you enough to say how they’re really feeling. It’s an honour. So if you can’t think of anything to say, just sit with them and bear witness to their distress. Hand them a tissue. Be there for them.

Oh, and in that paper, while 18.7 – 34.0% had suicidal thoughts over their lifetime, 7.2–14.5% had made actual plans, while 6.6–14.7% had made attempts. Don’t trivialise suicidal thoughts, but at the same time, don’t freak out that the person is going to kill themselves – just take action to support them, and in most cases, the thoughts will fade as the person gains hope.

Grocott, B., Sommer, J. L., & El-Gabalawy, R. (2021, Jun 28). Usual presence and intensity of pain are differentially associated with suicidality across chronic pain conditions: A population-based study. Journal of Psychosomatic Research, 148, 110557. https://doi.org/10.1016/j.jpsychores.2021.110557

Holopainen, M. R., Simpson, M. P., Piirainen, D. A., Karppinen, P. J., Schutze, D. R., Smith, P. A., O’Sullivan, P. P., & Kent, A. P. (2020, Jan 16). Physiotherapists’ perceptions of learning and implementing a biopsychosocial intervention to treat musculoskeletal pain conditions: a systematic review and metasynthesis of qualitative studies. Pain. https://doi.org/10.1097/j.pain.0000000000001809

Thompson, L., Dowell, A., Hilder, J., Macdonald, L., Stubbe, M., & Alchin, J. (2021, Jan 4). How do patients and General Practitioners talk about pain and negotiate empathy in consultations? A direct observational study. Health & Social Care in the Community. https://doi.org/10.1111/hsc.13259

Zangoni, G., & Thomson, O. P. (2017, 2//). ‘I need to do another course’ – Italian physiotherapists’ knowledge and beliefs when assessing psychosocial factors in patients presenting with chronic low back pain. Musculoskeletal Science and Practice, 27, 71-77. https://doi.org/https://doi.org/10.1016/j.msksp.2016.12.015

Why I don’t trust my clinical reasoning: and why this matters

“See someone experienced” I hear people with pain say. “They’ll know what’s wrong with you.”

Well, based on the research I’ve read, I wouldn’t be so sure. In fact, I’m certain my own clinical reasoning is biased, prone to errors that I don’t notice, and influenced by factors that most clinicians would be horrified to think they, too, were influenced by.

Let me give you a few to ponder:

I’m interested in women and pain – and there’s a lot of evidence showing that women’s pain doesn’t get the same kind of diagnostic and management attention as men. Now part of this is due to the inherent bias in research where experimental studies often rely on male rats, mice and undergraduates because they don’t have those pesky hormonal fluctuations each month. Even volunteering to take part in a pain study has been found to be biased – people who volunteer have been shown to be more risk-taking and more extraverted (Skinner, 1982) – though to be fair this is an old study!

But contextual factors such as gender, distress and even the supposed diagnosis do influence judgements about pain intensity (Bernardes & Lima, 2011) including potentially life-threatening chest pain (Keogh, Hamid, Hamid & Ellery, 2004). Gender bias has been identified in a large literature review of gender bias in healthcare and gendered norms towards people with chronic pain (Samulowitz, Gremyr, Eriksson & Hensing, 2018).

And if you have the misfortune to be judged to have low trustworthiness and you’re a woman, you’re more likely to be thought to have less pain and to be exaggerating your pain (Schafer, Prkachin, Kaseweter & Williams, 2016). Beware if you’re overweight and a woman because you’ll be likely judged as having less intense pain, the pain will be judged as less interfering, more exaggerated and less related to “medical” factors – women’s pain in particular is likely to be judged as “psychological” and given psychological therapy rather than other treatments (Miller, Allison, Trost, De Ruddere, Wheelis, Goubert & Hirsch, 2018).

The weird thing is that the clinicians involved in these studies were oblivious to their bias. And let’s not even go there with people of colour or so-called “minority” groups such as LGBTQI.

So as clinicians our initial impressions of a person can lead us astray – and I haven’t even started with the contribution experience has on clinical reasoning. Let me go there then!

Something that cognitive psychologists have explored for some years now, is the type of thinking that we draw on for clinical reasoning. System one is “fast reasoning” – where we rapidly, instinctively and emotionally make decisions on the fly. Kahneman (1982) first described these two processes and noted that fast thinking gets better with rehearsal and are helpful especially for skilled clinicians needing to make decisions in pressured contexts, and draw on “pattern recognition” – or to be precise, draw on deviation from a recognised pattern (Preisz, 2019). System two is “slow reasoning” where decisions are made in a considered way, are not influenced by emotional state, and can be thought of as “rational.” Slow thinking is most useful where the situation is complex, where decisions need to weigh multiple pieces of information, where the situation might be novel, or where, for persistent pain in particular, there are multiple disease processes occurring.

OK, so we should choose system two, right? Not so fast! System one is hard to switch from – it’s what underpins “intuition” or “hunches” – and it gets more entrenched the more experienced we are. According to Preisz (2019), system one “seeks to form a coherent, plausible story by relying on association, memories, pattern matching and assumption.”

Why is system one thinking not so great? Well, we’re human. We’re human in the way we respond to any reasoning situation – we anchor on the first and most “plausible” ideas, and these might be unrelated to the actual presentation we see. For example, if we’ve been reading a journal article on a new treatment and its indications, it’s amazing how many people will present with those exact same indications in the next week! This is availability bias or anchoring bias. We’re also inclined to believe our own patients and judgements are different from “those people” – especially “those people” who might respond best to clinical guidelines. This means that even in the face of clear-cut research showing the lack of effects of knee arthroscopy (Brignardello-Petersen, Guyatt, Buchbinder, Poolman et al, 2017) an orthopaedic surgeon I know argued that “we choose our patients very carefully” – essentially arguing that his patients are different, and this approach is the best one.

If experienced clinicians find it hard to “unstick” from old practice, or move quickly to “intuitive” reasoning (even if it’s called “pattern recognition”), and if we all find it hard to recognise when we’re biased, or even that we are biased, what on earth should we do? All us old hands should retire maybe? All follow algorithms and not use “clinical judgement”? Take the “human” out of clinical management and use AI?

Some of these things might work. There is evidence that algorithms and AI can offer effective and (perhaps) less biased diagnosis and management than our unaided human brain (Kadhim, 2018) but there are also studies showing that direct comparisons between decision aids and clinical judgement are rarely made, and those that have been carried out don’t show superior results (Schriger, Elder, & Cooper, 2017). But watch this space: AI is a rapidly developing area and I predict greater use of this over time.

The risk with decision aids is – garbage in, garbage out. If we look at existing research we can see that male, pale and potentially stale dominates: this doesn’t bode well for people of colour, for women, for the unique and idiosyncratic combination of diseases a person can have, or for untangling the impact of disease on the person – in other words, disability and illness.

So, to summarise. We are all biased, and it’s best to acknowledge this to ourselves upfront and personal. We can then turn to strategies that may reduce the biases. For me, the one I turn to most often is a case formulation, using information gathered from a semi-structured interview and a standard set of questionnaires. These have been developed a priori so my biases in information gathering are limited. By taking time to follow a case formulation, my thinking is slowed to that more deliberative system two. At least some of the biases I know I’m prone to are mitigated.

And yet, I know I am biased. That’s why I use a supervision relationship to help me identify those biases, to be challenged and to reflect.

Bernardes, S. F., & Lima, M. L. (2011, Dec). A contextual approach on sex-related biases in pain judgements: The moderator effects of evidence of pathology and patients’ distress cues on nurses’ judgements of chronic low-back pain. Psychology & Health, 26(12), 1642-1658.

Brignardello-Petersen, R., Guyatt, G. H., Buchbinder, R., Poolman, R. W., Schandelmaier, S., Chang, Y., Sadeghirad, B., Evaniew, N., & Vandvik, P. O. (2017, May 11). Knee arthroscopy versus conservative management in patients with degenerative knee disease: a systematic review. BMJ Open, 7(5), e016114. https://doi.org/10.1136/bmjopen-2017-016114

Kadhim, M. A. (2018). FNDSB: A fuzzy-neuro decision support system for back pain diagnosis. Cognitive Systems Research, 52, 691-700. https://doi.org/10.1016/j.cogsys.2018.08.021

Kahneman, D., Slovic, S. P., Slovic, P., & Tversky, A. (1982). Judgment under uncertainty: Heuristics and biases. Cambridge university press.

Keogh, E., Hamid, R., Hamid, S., & Ellery, D. (2004). Investigating the effect of anxiety sensitivity, gender and negative interpretative bias on the perception of chest pain. Pain, 111(1-2), 209-217.

Miller, M. M., Allison, A., Trost, Z., De Ruddere, L., Wheelis, T., Goubert, L., & Hirsh, A. T. (2018, Jan). Differential Effect of Patient Weight on Pain-Related Judgements About Male and Female Chronic Low Back Pain Patients. J Pain, 19(1), 57-66. https://doi.org/10.1016/j.jpain.2017.09.001

Preisz, A. (2019, Jun). Fast and slow thinking; and the problem of conflating clinical reasoning and ethical deliberation in acute decision-making. Journal of Paediatric Child Health, 55(6), 621-624. https://doi.org/10.1111/jpc.14447

Samulowitz, A., Gremyr, I., Eriksson, E., & Hensing, G. (2018). “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. Pain Research and Management, 2018.

Schafer, G., Prkachin, K. M., Kaseweter, K. A., & Williams, A. C. (2016, Aug). Health care providers’ judgments in chronic pain: the influence of gender and trustworthiness. Pain, 157(8), 1618-1625. https://doi.org/10.1097/j.pain.0000000000000536

Schriger, D. L., Elder, J. W., & Cooper, R. J. (2017, Sep). Structured Clinical Decision Aids Are Seldom Compared With Subjective Physician Judgment, and Are Seldom Superior. Ann Emerg Med, 70(3), 338-344 e333. https://doi.org/10.1016/j.annemergmed.2016.12.004

Skinner, N. F. (1982, 1982/12/01). Personality characteristics of volunteers for painful experiments. Bulletin of the Psychonomic Society, 20(6), 299-300. https://doi.org/10.3758/BF03330107

Flare-ups and how to handle them

If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

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Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

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Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

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Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

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Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

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I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

Having The Conversation…

Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle” ( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.