Chronic pain

letting it all hang out

Taking a peek beneath the hood

What would it be like to lift the hood and take a good hard look at the skills needed to carry out various chronic pain management treatments? You know, take each profession’s jargon away and really look at what a clinician needs to know to conduct safe, effective treatment. Oh I know, this is skating on thin ice – each profession’s treatment paradigm and assumptions are incredibly important and I’m an outsider looking in, so please, before you push me under the cold, cold water, let’s think about the parts that really do the business in pain management.

The first set of skills that are crucial to effective pain management are those to do with communicating. The ability to listen carefully, reflect what’s being said, and to ask questions to genuinely understand what a person believes and feels, and how they got there.  To be able to help the person identify what’s important to them, their main concerns, their values and the direction they want to move towards. To know what to say and how to say it (Bensing & Verhuel, 2010; Hall, 2011; Hulsman, 2009; Klaber & Richardson, 1997; Oien, Steihaug, Iversen & Raheim, 2011).

These skills are generic to all health professionals, although perhaps enhanced and refined in those clinicians who are involved in talking as the therapeutic process.

The second set of skills involve being able to change behaviour. To be aware of operant conditioning, classical conditioning, and to use these principles along with those involving cognitions (eg “education” or providing information).  Interestingly, while these principles are derived from psychology, and perhaps educational research, ALL health professionals use these skills when they’re involved in asking the person to make a change outside of the treatment room.

Unless the clinician is doing something TO the patient, treatments for chronic pain typically involve asking the patient to DO something (Honicke, 2011; Persson, Rivano-Rischer & Eklun, 2004; Robinson, Kennedy & Harmon, 2011).

The third involve being able to progressively grade activities from simple to complex – modifying them so that the demands just slightly exceed the person’s capabilities or confidence.

  1. Those demands might be physical (repetitions, range of movement, loading, isolation to integrated movement),
  2. Cognitive (simple one-step directions through to complex multi-stage decision-making activities),
  3. Social (working alone, in a pair, in a small group, large group, being the follower, being the leader),
  4. Emotional (joyful flow or frustrating, touching on highly important values or those that are not especially relevant).
  5. Contextual (controlled contexts like a clinic room vs highly chaotic like a shopping mall on Christmas Eve)

It’s this latter set that I think we may forget when looking at skills and professionals. There can be an assumption that being able to do an exercise programme in a gym or clinic should lead to greater participation in life outside that setting. Exercises can be prescribed to isolate a small set of muscles, using all the usual suspects to increase strength, flexibility, speed and stamina – and the techniques to progress along this kind of training are, sorry guys, reasonably simple to learn. The challenge is for the person doing them to be able to transfer this training to the real world where movements are integrated, where the environment is complex and the demands and distractions are myriad.

Likewise with graded exposure training – beginning with the least feared movements, progressing to more and more feared situations using a graded hierarchy is something any one of us can learn provided we take the time to understand how and why this approach is used. What’s far more difficult is helping the person doing these activities in new and evolving situations so the skills generalise. Occupational therapists, for what it’s worth, are explicitly and uniquely trained to analyse occupations/activities to do precisely this kind of generalisation.

When we look at what works in chronic pain management, there are four things:

  1. Placebo or meaning effects which are strongly influenced by the way we communicate, and the person’s expectations from us and our interaction.
  2. Providing accurate information so the pain is “de-threatened” or at least loses a large degree of the threat value even if the pain doesn’t reduce as a result.
  3. Supporting the person to do more, whether that be through exercise or just doing more of what they want.
  4. Generalising those skills so that irrespective of the pain fluctuations or context, the person can remain able to participate in what’s important in their life.

And the skills needed to do these things? They’re the ones I’ve listed above.

What I think this means is the time has come to stop describing various treatments as “belonging” to any single discipline. They don’t “belong” to anyone – they’re generic skills that we ALL use. So I, as an occupational therapist warped by psychologists, will have greater technique in communicating, noticing psychosocial obstacles, and helping a person generalise skills into a range of contexts by virtue of my training. Paul, as a physiotherapist, will have greater technique in prescribing specific exercises for certain muscles, and have more confidence in exercise progression. Scott will have greater expertise in enhancing expectations and helping a person reconceptualise their pain in a way that dethreatens it. We ALL have effective skills across all of these areas, but at the same time we have particular expertise in what we originally trained in.

Finally, what I think this means is that when the call is made for clinicians to work in primary care, or alongside GPs or in ED, to help reduce healthcare use, increase participation in life and so on, it’s time we stopped saying “The (X profession) and the GP should form a team”, I think it’s time for us to say “The allied health team (made up of people with the following skills) should form a team with the person living with pain”.


Bensing, J. M., & Verheul, W. (2010). The silent healer: The role of communication in placebo effects. Patient Education and Counseling, 80(3), 293-299. doi:

Eakin, E., Reeves, M., Winkler, E., Lawler, S., & Owen, N. (2010). Maintenance of physical activity and dietary change following a telephone-delivered intervention. Health Psychology, 29(6), 566-573.

Hall, J. A. (2011). Clinicians’ accuracy in perceiving patients: Its relevance for clinical practice and a narrative review of methods and correlates. Patient Education & Counseling, 84(3), 319-324.

Hardcastle, S., Blake, N., & Hagger, M. S. (2012). The effectiveness of a motivational interviewing primary-care based intervention on physical activity and predictors of change in a disadvantaged community. Journal of Behavioral Medicine, 35(3), 318-333.

Honicke, M. (2011). Acceptance and commitment therapy as a challenging approach for occupational therapists in pain management. Ergotherapie und Rehabilitation, 50(7), 28-30

Hulsman, R. L. (2009). Shifting goals in medical communication. Determinants of goal detection and response formation. Patient Education & Counseling, 74(3), 302-308.

Klaber, M. J., & Richardson, P. (1997). The influence of the physiotherapist-patient relationship on pain and disability. Physiotherapy Theory and Practice, 13(1), 89-96.

Okun, M. A., & Karoly, P. (2007). Perceived goal ownership, regulatory goal cognition, and health behavior change. American Journal of Health Behavior Vol 31(1) Jan-Feb 2007, 98-109.

Oien, A. M., Steihaug, S., Iversen, S., & Raheim, M. (2011). Communication as negotiation processes in long-term physiotherapy: A qualitative study. Scandinavian Journal of Caring Sciences, 25(1), 53-6

Persson, E., Rivano-Fischer, M., & Eklun, M. (2004). Evaluation of changes in occupational performance among patients in a pain management program. Journal of Rehabilitation Medicine, 36(2), 85-91.

Robinson, K., Kennedy, N., & Harmon, D. (2011). Review of occupational therapy for people with chronic pain. Australian Occupational Therapy Journal, 58(2), 74-81.

Rosser, B. A., McCullagh, P., Davies, R., Mountain, G. A., McCracken, L., & Eccleston, C. (2011). Technology-mediated therapy for chronic pain management: The challenges of adapting behavior change interventions for delivery with pervasive communication technology. Telemedicine Journal & E-Health, 17(3), 211-216.


Connecting: A cognitive behavioural approach to initial interviews

As I’ve been reading and thinking about the ways health professionals work with people who live with pain, my mind keeps coming back to the power of human connection. Pain is ephemeral: we can’t touch it, see it or truly understand the “what it is like” for that person to experience that pain.  The only way we can get to understand even a little of another’s pain is when we take the time to hear what they’re saying. This post is about how a cognitive behavioural approach can inform our communication and build a bridge towards shared understanding. Only once this is begun can we start “treatment”.

A cognitive behavioural approach is based on the idea that people are not blank canvases, reflecting whatever is thrown at them. Instead people actively think about what is happening, seeking out information they think is relevant, depending on their past experiences, the framework they use to understand what’s going on, and to make predictions in light of what they want to do (goals).

What this means is that a conversation about pain is like dipping your toe into a stream. The stream keeps moving on, but the water gets swirled around where your toe is dipped. Whatever is upstream comes down along the waterways, where you dip your toe is here and now, and depending on the depth of your toe-dipping (and the stream’s flow) will influence the stream’s direction downstream. If your conversation is superficial and only concerned with issues the person doesn’t feel is relevant, your toe-dipping isn’t going to have much influence. But if you take the time to get into the water, immersing yourself in what the person is really saying (where they’ve been, what they’ve learned, where they want to go), you may well have a huge influence on their future directions.

What’s the focus of an initial interview?

An initial interview usually focuses on “what are the problems?” and “what can I do?” Of course, most clinicians also recognise the importance of establishing rapport, and the need to be empathic. The actual factors considered important within an initial interview vary depending on the model of health or disease adopted by the clinician. For a strongly biomechanically-oriented clinician the factors may be muscle length, strength, range of movement, loading and tolerance. For a clinician using a biopsychosocial framework, hopefully weight will also be placed on beliefs, understanding, attitudes, past experiences, emotions, predictions for the future, past treatments and what has been learned from these, existing stressors, vulnerabilities and strengths. And of course, a whole heap of family, friends, workplace and social factors should also form part of this assessment.

I’ve attached a semi-structured interview I’ve used clinically when working with people who live with chronic pain – this interview can take 60 – 90 minutes, depending on the complexity of the person’s narrative – Self Management Semistructured interview. I don’t think this is the only way to approach learning about someone else’s pain, but it provides me with a very sound basis for deciding whether I can help the person, and more importantly, I think it gives the person a chance to feel that I’m really listening.

To abbreviate this interview, I’d hone in on two main questions that I need to answer:

  1. Why is this person presenting in this way at this time?
  2. What can be done to reduce this person’s distress and disability?

All of my questions are designed to help me answer these two questions. Of course, they’re not going to work at all unless the person I’m talking with is part of this conversation. After all, they have ideas about what they want from me, why they’re looking for help, and what’s led them to come to me now rather than seeing someone else, or at another time.

There’s something missing from this interview though!

Something you can’t get from a simple list of questions is how to ask them and how to respond to the answers. I used to think the art of asking good interview questions lay with the wording, but I’m not so sure now. I think it’s about my attitude. Let me unpack this.

Socratic questioning is the main orientation I use in my initial interview. Socratic questioning is about guided discovery, or a dialogue between me and the other person in which I guide both of us towards discovering things the person knows but may not know they know. Confused? Well, here’s an explanation of the process. (BTW I follow Christine Padesky’s approach for Socratic questioning – click here for more info)

Padesky states “Socratic questioning involves asking the client questions which: a) the client has the knowledge to answer; b) draw the client’s attention to information which is relevant to the issue being discussed but which may be outside the client’s current focus; c) generally move from the concrete to the more abstract so that; d) the client can, in the end, apply the new information to either reevaluate a previous conclusion or construct a new idea.”

To begin with, we need to find out what the person knows they know – so I will ask Informational Questions.  These include things like “what do you think is going on?”; “what’s your theory about your pain?”; “why do you think your sleep is so bad right now?”.

The second and equally important part is Listening. Not only am I listening to (and then reflecting that I’ve heard), I’m listening for words or phrases that are idiosyncratic, have emotional impact, those metaphors and images the person uses, the emotional feeling tone of their account.

The third is Summarising in which I gather together several phrases or responses given by the person, and present them back to him or her to make sure I’ve heard them correctly, but also to give them a chance to hear what they’ve been saying. Sometimes it’s only by talking that a person finds out what they’ve been thinking (ever had that happen to you?!). In Motivational Interviewing this is called “giving a bouquet” of what the person has been saying. I like that image!

The final phase is Synthesising, or Analytical questions. This occurs after you’ve spent the time finding out what the person thinks, listened carefully and then reflected this, explored the unique meanings the person puts on aspects of what is going on for them, and finally you’ve summarised and reflected their narrative as a whole – synthesising questions help the person make sense of what they’ve just said, pulling it all together. I sometimes use phrases like “so where does this leave you?” or “what does all that mean now?” or “what is your next best step?” Smart readers will recognise some of the Motivational Interviewing phrases in here!

The attitude I bring to this kind of encounter is one of curiosity. I’m genuinely curious to try to understand how this person has developed his or her understanding of their situation. This helps me step away from judging their situation as “good” or “bad, and in particular helps me avoid judging them as “good” or “bad” (or “coper” or “noncoper”). I constantly remind myself and others that people generally don’t get up in the morning to do dumb things. There’s usually a reason for people being in the situation they’re in – and often it’s about lacking accurate information.

Putting it together

Having gathered information, reflected what you’ve understood and confirmed this understanding with the person – now’s your chance to help that person develop their own, personal understanding of what’s going on. I like to call this their own personal model of pain. It won’t be complete, but it’s a great beginning. Padesky suggests asking “What do you make of this? How do you put this? How do you put these ideas together?”

For more information on a strengths based approach to cognitive behavioural therapy (not the same as a cognitive behavioural approach, but very interesting to read) – go here for a full paper by Padesky and Mooney, published in 2012, and for a much more detailed discussion of Socratic questioning in a panel – go here.




Scopes, roles, boundaries, contributions: who does what in a brave new healthcare world?

I have been meaning to write a post like this for some time now, but prompted to today by two things: one is an ongoing debate about non-psychologists using “CBT” with people who are experiencing pain, and the other is a conversation with Chai Chuah, Director General of the Ministry of Health in New Zealand. Let me set the scene:

We know there are a lot of people in our communities who have relatively simple pain problems – a temporarily painful knee after walking up hills for the first time in ages, a painful back that “just happened” overnight, a rotator cuff problem that makes it difficult to get dressed or hang out washing. We know that there are some pretty simple things that will help in these situations: some reassurance that the awful thing the person is worried about isn’t likely to happen (no, you won’t end up in a wheelchair because of your back pain, and no it’s not cancer); some pain relief to help with sleeping more soundly and so we can keep doing things; and gradually returning to normal occupations including work even if the pain hasn’t completely gone.

We also know that approximately 8% of people with low back pain will ultimately end up contributing to the most enormous spend in healthcare that we know about – their pain continues, their distress increases, their disability is profound.

BUT before we put all our attention on to this small group of people, I think it’s worthwhile remembering that people in this group are also more likely to have other health conditions, they’re more likely to smoke, to be overweight, to have mental health problems; they also probably come from lower socioeconomic groups, groups including people from minority ethnicities, people who find it much harder to get work, to remain in education and perhaps even people who typically use healthcare more often than the people who get back on their feet more quickly. Data for these statements comes from the 2006 Health and Disability Survey in New Zealand and numerous studies by epidemiologists around the world  –  back pain is only one of a number of problems people in this group have to deal with. I’m also not saying everyone who gets back pain that lingers has all of these additional concerns – but there is a greater prevalence.

What does this mean?

Well, for a while I’ve been saying that people working in this area of health (musculoskeletal pain) seem to be developed a set of common skills. That is, there is more in common between me and Jason Silvernail, Mike Stewart, Paul Lagerman, Alison Sim, Lars Avemarie, Rajam Roose and many others around the world from many different health professions, than there is between me and a good chunk of people from my own profession of occupational therapy. And I don’t think I’m alone in noticing this. (ps please don’t be offended if I’ve left your name out – you KNOW I’m including you too!)

What’s common amongst us? The ability to see and work with complex, ambiguous, messy and multifactorial situations. Recognising that along with all of our individual professional skills, we also need to have

  • effective communication skills,
  • patient/person-centredness,
  • critical thinking,
  • generating a framework to work from,
  • identifying and solving the unique goals and situations the people we work with have,
  • ability to step beyond “this is my role” and into “what can be done to reduce this person’s distress and disability?”
  • And possibly the most important skill is being able to tolerate not knowing without freaking out.

That ongoing cycle of assess -> hypothesise -> test -> review -> reassess -> hypothesise -> test -> reassess ->  review

This is important because when people come to see us with a complex problem (and increasingly this seems to happen), the simple models break down. The tissue-based, the germ-based, the simple single-factor approaches do not fully explain what’s going on, and don’t provide adequate solutions.

What this means is we, ALL health professionals, will need to think about where our skills lie. Are we people who enjoy pumping through a big number of relatively simple problems? If so, that’s great! Your contribution is clear-cut, you know what you need to do, and you refine and practice your skill-set until you’re expert. I think this is awesome. Or, are we people who relish complex, who look at situations and see that it’s messy and complicated but don’t get put off? In this group we probably use skills for researching and planning, operationalising or getting things started, and we’re often the people who network furiously. We do this not because we’re social butterflies (me being the ultimate introvert), but because we know WE CAN’T DO THIS WORK ALONE!

What about clinical skills and scopes and boundaries?

You know, I am not entirely sure that anyone except the health professional him or herself cares who does what they do to help someone get better. It’s not whether a nurse or a speech language therapist or a podiatrist or a medical practitioner, it’s whether the person (or people) treats each person as unique, listens carefully, is honest and straightforward about what can and can’t be done, and knows when his or her skills are not sufficient so calls in the rest of a team for help. There is a time for working beyond your scope, and a time for calling in an expert – but to recognise when an expert is needed requires knowing enough about the problem to know that an expert might be helpful.

What this means in healthcare, I think, is adopting a framework that works across diagnosis and into the idea that people actively process what happens to them, they make their minds up about what’s needed, and they can learn to do things differently. I’d call this self-management, but I could equally call it a cognitive behavioural approach, or behaviour change, or motivational approaches or even patient-centred or person-centred care. The idea that people understand more than we often give credit, that they make sense from what happens to and around them, and that this knowledge influences what they do comes from a cognitive behavioural model of people, and fits beautifully within a biopsychosocial framework.

So, when I advocate getting skilled at cognitive behavioural skills, I could equally use the term “person-centred” or “self-management” – whatever the label, the contributions from each professional involved will ultimately influence the health experience and actions of the person we’re seeing.

Isn’t it time to be excited about opportunities to develop and to extend our skills? And if this doesn’t excite you, isn’t it great that there are a group of people who will respond to the simple and straightforward – but let’s not confuse the two situations.



Pain Acceptance rather than Catastrophising influences work goal pursuit & achievement

We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue. After all, life doesn’t stop just because pain is a daily companion. I’ve been interested in how people maintain living well despite their pain, because I think if we can work this out, some of the ongoing distress and despair experienced by people living with pain might be alleviated (while we wait for cures to appear).

The problem with studying daily life is that it’s complicated. What happened yesterday can influence what we do today. How well we sleep can make a difference to pain and fatigue. Over time, these changes influences can blur and for people living with pain it begins to be difficult to work out which came first: the pain, or the life disruption. Sophisticated mathematical procedures can now be used to model the effects of variations in individual’s experiences on factors that are important to an overall group. For example, if we track pain, fatigue and goals in a group of people, we can see that each person’s responses vary around their own personal “normal”. If we then add some additional factors, let’s say pain acceptance, or catastrophising, and look to see firstly how each individual’s “normal” varies with their own acceptance or catastrophising, then look at how overall grouped norms vary with these factors while controlling for the violation of usual assumptions in this kind of statistical analysis (like independence of each sample, for example), we can begin to examine the ways that pain, or goal pursuit vary depending on acceptance or catastrophising across time.

In the study I’m looking at today, this kind of multilevel modelling was used to examine the variability between pain intensity and positive and negative feelings and pain interference with goal pursuit and progress, as well as looking to see whether pain acceptance or catastrophising mediated the same outcomes.

variationsThe researchers found that pain intensity interfered with goal progress, but it didn’t do this directly. Instead, it did this via the individual’s perception of how much pain interfered with goal pursuit. In other words, when a person thinks that pain gets in the way of them doing things, this happens when they experience higher pain intensity that makes them feel that it’s hard to keep going with goals. Even if people feel OK in themselves, pain intensity makes it feel like it’s much harder to keep going.

But, what’s really interesting about this study is that pain acceptance exerts an independent influence on the strength of this relationship, far more than pain catastrophising (or thinking the worst). What this means is that even if pain intensity gets in the way of wanting to do things, people who accept their pain as part of themselves are more able to keep going.

The authors of this study point out that “not all individuals experience pain’s interference with goal pursuit to the same extent because interference is likely to depend on pain attitudes” (Mun, Karoly & Okun, 2015), and accepting pain seems to be one of the important factors that allow people to keep going. Catastrophising, as measured in this study, didn’t feature as a moderator, which is quite unusual, and the authors suggest that perhaps their using “trait” catastrophising instead of “state” catastrophising might have fuzzed this relationship, and that both forms of catastrophising should be measured in future.

An important point when interpreting this study: acceptance does not mean “OMG I’m just going to ignore my pain” or “OMG I’m just going to distract myself”. Instead, acceptance means reducing unhelpful brooding on pain, or trying to control pain (which just doesn’t really work, does it). Acceptance also means “I’m going to get on with what makes me feel like me” even if my pain goes up because I do. The authors suggest that acceptance might reduce pain’s disruptive influence on cognitive processes, meaning there’s more brain space to focus on moving towards important goals.

In addition to the cool finding that acceptance influences how much pain interferes with moving towards important goals, this study also found that being positive, or feeling good also reduced pain interference. Now this is really cool because I’ve been arguing that having fun is one of the first things that people living with chronic pain lose. And it’s rarely, if ever, included in pain management or rehabilitation approaches. Maybe it’s time to recognise that people doing important and fun things that they value might actually be a motivating approach that could instill confidence and “stickability” when developing rehabilitation programmes.

Mun CJ, Karoly P, & Okun MA (2015). Effects of daily pain intensity, positive affect, and individual differences in pain acceptance on work goal interference and progress. Pain, 156 (11), 2276-85 PMID: 26469319

before the nor'wester

“Them” and “us”

The governing principles and purposes of International Association for the Study of Pain (and thus NZ Pain Society) are clear that “IASP brings together scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.”
There is no mention in this purpose of the people who experience pain. I think this is an omission.

Pain is a subjective experience. This means we can only be informed about pain when people communicate about it. So many aspects of pain have not been explored in a great deal of detail: things like gender, the lived experience of “good” outcomes vs “bad” outcomes, the use of labels like “failed back syndrome”, the “what it is like to be” a person receiving types of treatments, even determining whether a treatment is acceptable in the context of the real world – or not.

If we want to reduce the burden of pain within our population, shouldn’t we be incorporating the views of people living with pain? so the aims and priorities of those living with pain are included, increasing public awareness of pain and what it means to counter the prevailing attitudes towards people living with pain?

There is, however, a divide between “us” and “them”. “Us” being privileged to know about pain, to develop research agendas, to study pain and translate into improved pain relief, while “them” are passive recipients of such efforts.  This doesn’t fit with my views of the reducing gap between treatment provider and recipient, or of the relationship of collaboration that must exist between a person wanting help and those giving it. And it doesn’t afford a strong voice to people living with pain who have as valid a view as those who do not live with pain.

Is there room for a person-focused approach in pain research? And can people living with pain have a voice?

I’ve been reading some of the very old medical journals, ones like the New England Journal of Medicine from 1812. In this article, J. G. Coffin expounds on the use of cold bathing saying “For several years past from May to November, I have been in the habit of walking or riding on horseback freely til 12 or 1 o’clock of the day, hastening to the water’s edge, and plunging in with the least possible delay; and in no instance have I regretted the habit, but on the contrary have found it alike grateful and invigorating.” Now I’m not about to suggest we all begin cold bathing, but what I want to point out is the very personal nature of this account.

Compare this with an excerpt from Martel, Finan, Dolman, Subramanian et al (2015) discussing self-reports of medication side effects and pain-related activity interference: “Despite the potential benefits of each of these medications for the management of patients with pain, it is well known that the combination of a wide range of medications may lead to a number of adverse side effects, including nausea, dizziness, headaches, constipation, and weakness. These medication side effects are frequently observed in clinical settings and represent a complex pain management issue.” (p. 1092).

Patients,  not people, are discussed in the latter paper, even though the subject of this study is the experience of people taking medication for their pain. Numbers of side effects. Self-reports of pain intensity, reduced to a 0 – 10 scale. “Negative affect” reduced to numbers.  Interference in three areas of activity rated using the same scale.

While I applaud the need to measure variables of importance, I find it interesting that articles about subjective experiences of people feature far less prominently in our esteemed journals of pain research than those presenting a one-step-removed depersonalised view of what is a human experience.

In recent months I have been reading about the space that occurs between a clinician and patient. Benedetti’s writings on The Patient’s Brain (which, incidentally, also and equally discusses the clinician’s brain) help unpack that special place in which ritualised relationships including power and plea are played out every day. What I draw from Benedetti’s book is that while people seeking treatment appear the supplicants, in fact it is they who determine (to a great degree) whether a treatment will be helpful or not. The meanings ascribed to the interaction are formed by the person seeking help. Clinicians play out a role according to the “rules” of this interaction.

In a treatment setting we are but two humans meeting in a shared space. The quality of that interaction, and indeed the benefit experienced by the recipient of treatment, is strongly influenced not only by that person’s expectations, but also by the degree of empathy expressed by the treatment provider.  As Garden (2008) states “The biomedical approach to medicine all too often overrides concern about patients’ psychological and social experiences of illness” (Garden, 2008, p. 122).  She points out some of the factors that lead to difficulty with empathy in clinical encounters are often about social and cultural issues – too little time, sleep deprivation, a clinical culture that neglects clinician’s personal identity and physical experience (p. 122).

We should also know that downregulating empathy for people in clinical encounters can be a self-care strategy, as Reiss indicates in a brief paper in 2010 (Reiss, 2010). Downregulating the “pain empathy” response involves inhibiting neural circuits such as the somatosensory cortex, insula, anterior cingulate cortex, and periaqueductal gray. Downregulating these areas also “dampen[s] negative arousal in response to the pain of others”. She goes on to say “without emotion regulation skills, constant exposure to others’ pain and distress may be associated with personal distress and burnout” (p. 1605).  However, the harm caused by dehumanising, and unempathic healthcare results in focusing on organs and tests and poorer outcomes, as well as greater burnout, increased substance abuse and more patient complaints (p. 1605).

Cohen, Quintner, Buchanan, Nielson & Guy (2011) writing movingly of the potential role health professionals have in stigmatising those experiencing chronic pain. I wonder if the very way we investigate pain, the scientific model so often used to examine aspects of pain and pain management that works by compartmentalising people into “them” (usually people with pain) and “us” (usually researchers and clinicians) also leads to a sense that “we” are different somehow from people who experience pain. And hence from there to organisations established to study the pain of “them” without actually including “them”.

I wonder how many people working in the field of pain and pain management experience pain. Hopefully ALL of them sorry, US. And that means we need to begin thinking about how easily any one of us could become a person living with pain, and perhaps begin considering how we could work together to shift the societal belief that there is a “them” and “us.

Cohen, Milton, Quintner, John, Buchanan, David, Nielsen, Mandy, & Guy, Lynette. (2011). Stigmatization of patients with chronic pain: The extinction of empathy. Pain Medicine, 12(11), 1637-1643.

Garden, Rebecca. (2009). Expanding clinical empathy: an activist perspective. Journal of General Internal Medicine, 24(1), 122-125.

Martel, Marc O. , Finan, Patrick H. , Dolman, Andrew J. , Subramanian, Subu , Edwards, Robert R. , Wasan, Ajay D. , & Jamison, Robert N. . (2015). Self-reports of medication side effects and pain-related activity interference in patients with chronic pain: a longitudinal cohort study. Pain, 156(6), 1092-1100.

Riess, Helen. (2010). Empathy in medicine–a neurobiological perspective. JAMA, 304(14), 1604-1605. doi:

The bad boys made us do it

How good is the TSK as a measure of “kinesiophobia”?

The Tampa Scale for Kinesiophobia is a measure commonly used to determine whether a person is afraid of moving because of beliefs about harm or damage, with a second scale assessing current avoidance behaviour. It has been a popular measure along with the pain-related fear and avoidance model and together with the model and measures of disability, catastrophising and pain-related anxiety, has become one of the mainstays within pain assessment.

There have been numerous questions raised about this measure in terms of reliability and validity, but the measure continues to be one that is widely used. The problems with reliability relate mainly to a long version (TSK-17) in which several items are reverse scored. Reverse scored items often state a negative version of one of the concepts being assessed by the measure, but pose problems to people completing the measure because it’s hard to respond to a double negative.  In terms of validity, although the measure has been used a great deal and the original studies examining the psychometric properties of the instrument showed predictive validity, the TSK’s ability to predict response to treatment hasn’t been evaluated.

Chris Gregg and colleagues from The Back Institute and CBI Health Group studied a cohort of 313 people with low back pain attending one of the rehabilitation clinics in New Zealand. Participants completed the TSK at the beginning of treatment, and again at programme completion.  Along with the TSK, participants also completed a numeric pain scale, a modified Low Back Outcome score, and indicated whether they were working or not. These latter measures were considered to be “Quality of Life” measures, although they’re not officially QoL scales.

Before I turn to the study design and statistics, I’ll take a look at the modified Low Back Outcome score. Now I don’t know if you’ve ever searched for something like this, but believe me when I say there are SO many versions of SO many different “modified” back pain questionnaires, it’s really hard to work out exactly which one is the one used in this study, nor how it was modified. I’m assuming that it’s the one mentioned in Holt, Shaw, Shetty and Greenough (2002) because it’s mentioned in the references, but I don’t know the modifications made to it.  The LBOS is a fairly brief 12 item measure looking at pain intensity “on average” over the last week, work status, functional activities, rest, treatment seeking, analgesic use, and another five broad activities (sex life, sleeping, walking, traveling and dressing). It’s been described as having good internal consistency and test-retest reliability but validity isn’t mentioned in the 2002 paper.

Now, coming to this study, overall people improved at the completion of the programme. Pain reduced by 1.84 on the NPS, m-LBOS scores increased by 10.4 (a 28% improvement), and the TSK scores also improved by 5.5. Of course, we’d hope that at the end of a programme people would be doing better – though I’d prefer to see outcomes measured at least another three to 9 months after programme completion.

The authors looked at the relationship between the TSK and initial scores – there were small  statistical relationships between these measures. They then examined the scores between pre-treatment TSK and QoL measures at the end of treatment to establish whether there was a relationship between kinesiophobia and eventual outcome. There wasn’t. At least, not much of a relationship. These authors conclude that the TSK is therefore not a good measure to employ to predict those at high risk of chronicity due to fear of movement. I was a bit disappointed to see that a subscale analysis of the TSK wasn’t carried out – so it’s not possible to know whether change was associated with reduced beliefs about fear of harm/reinjury or whether it was due to reduced avoidance, or both.

Now here’s where I get a bit tangled up. Wouldn’t you expect the underlying constructs of the TSK (fear of harm/reinjury, and avoidance) to be the targets of a back pain related treatment? Especially one that includes cognitive behavioural therapy, education and movement? If we’re using a measure I think we should USE it within our clinical reasoning, and deliberately target those factors thought to be associated with poor outcomes. If we’re successful, then we should be able to see a change in domains thought to be associated with those constructs. In this programme, given that people were given treatment based on sub-typing, including education and CBT, I would hope that pain-related fear and avoidance would be directly targeted so that people develop effective ways of dealing with unhelpful beliefs and behaviours. To establish whether that had happened I’d want to look at the association between post-treatment TSK and measures of function or disability.

And getting back to the timing of outcome assessment, given that we’re interested in people managing any residual back pain (and in this study people were left with pain scores on the NPS of 3.4 (+/- 2.4) they still had some pain), wouldn’t you be interested in how they were managing a bit further down the track? We can (almost) guarantee that people will make changes directly as an effect of attention and structured activities. Measuring what occurs immediately at the completion of a programme may not show us much about what happens once that person has carried on by him or herself for a few months. My experience with chronic pain programmes shows a typical pattern of improvement immediately at the end of a programme, then six weeks later, what can be called regression to the mean, or what we often described as “the dip” or “the slump” as reality hits the road. At a further six months down the track, results had improved a bit, and these were usually sustained (or thereabouts) at the following twelve month follow-up.

So, does this study provide us with evidence that the TSK isn’t useful as a predictive tool? I’m not so sure. I think it does show that there are improvements in TSK, pain, disability and work status immediately at the end of a programme. Unfortunately TSK scores at the end of the programme are not analysed into subscales, so we don’t know which aspects of pain-related fear and avoidance were affected – but we know that they were.

For clinicians working in chronic pain programmes, where people are referred after having remained disabled and/or distressed despite having had prior treatment, the TSK may not be the most useful tool ever. The problems I’ve had with it are that scores in the fear of injury/reinjury subscale are lower when people have been given good pain “education” – but often present with a combined high score because of very high scores on the avoidance subscale.

A lovely study by Bunzli, Smith, Watkins, Schütze and O’Sullivan (2014) looked at what people actually believe about their pain and the associated TSK items. They found that many people DO believe their pain indicates harm, and they also found that people were worried about the effect pain would have on other things – and it’s this part that I find particularly interesting. It may not be the pain that matters as much as the anticipated losses and disruption to normal life that could occur.

The original authors of the “fear-avoidance” model, Vlaeyen and Linto (2012) reviewed the model after 12 years, and agree there is much to be done to refine assessment of pain-related fear. Self-report measures are only as good as the ability, insight and willingness of participants to complete them accurately.

So, is it time to throw the TSK out the window? I don’t think so – at least not yet. There’s more we need to do to understand pain-related fear and subsequent avoidance.


Chris D. Gregg, Greg McIntosh, Hamilton Hall, Heather Watson, David Williams, Chris Hoffman, The relationship between the tampa scale of kinesiophobia and low back pain rehabilitation outcomes, The Spine Journal (2015),

Bunzli, S., Smith, A., Watkins, R., Schütze, R., & O’Sullivan, P. (2014). “What Do People who Score Highly on the Tampa Scale of Kinesiophobia Really Believe? A Mixed Methods Investigation in People with Chronic Non Specific Low Back Pain The Clinical Journal of Pain DOI: 10.1097/AJP.0000000000000143

Vlaeyen, J. W., & Linton, S. J. (2012). Fear-avoidance model of chronic musculoskeletal pain: 12 years on. Pain, 153(6), 1144-1147. doi:

troubled roads

Talking past each other: Secret conversations, hidden realities

Take a look at what is written about pain and people living with pain. Look at it with a critical eye. What do you see?

We have descriptions of battling, winning, losing, overcoming, finding a way, getting through, controlling, removing, reducing. Pain is the invader, the alien, something against which we must prevail. And we may prevail using the tools of modern science: we diagnose, we identify, we label and we explain. We treat, we medicate, we use novel movements, graded activity, we avoid sensitising a sensitised nervous system.

The results of this discourse are that when pain does not reduce, is not overcome, cannot be controlled, does not respond to treatment or explanation, we as treatment providers have lost.

Cognitive dissonance is the mental stress or discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, or values. When faced with the situation in which pain “should” have reduced but hasn’t, treatment providers explain away this uncomfortable fact by suggesting that the person hasn’t been following instructions, the treatment wasn’t carried out properly or wasn’t the right treatment, the real cause wasn’t found, the explanation wasn’t thorough enough, the person wasn’t convinced, the treatment wasn’t carried out for long enough, or even that there was a change but the person didn’t recognise it, didn’t make the most of it, expected more.

How often do people living with pain fudge the outcome to avoid displeasing the person treating them? Fail to let the clinician know that yes, there’s still an impact on life despite pain being explained or managed?

Words, or discourse, are as John Shotter put it, “prostheses for moving about through our world’s physicality” (Shotter, 1993). By conversing, clinicians are given a glimpse into a client’s world, but at the same time, clinicians shape that conversation, guiding and leading it in directions that suit the clinician’s purpose. The words used by the client are translated into technical jargon, one prosthesis replaced with another, more “correct” one. Much of the “what it is like” to live with pain is never spoken of, perhaps never verbalised and never made tangible.

Let’s examine some of the expectations we as clinicians might hold about pain (taken from Strong, 1999):

  1. Pain is personal and individual. This means that outward demonstrations of pain are discouraged – those who do are labelled negatively and called “distressed”, “disabled”, their behaviour called “maladaptive”, and in some cases even called “histrionic”, “malingering”, or simply “wallowing”.
  2. Pain is valid only if “we” all agree on it. Although this discourse is slowly changing there’s a hint still present that if the person doesn’t “recover” the way they’re expected to, there’s something wrong with them – it’s those “psychosocial factors”, not the real pain mechanisms.
  3. Suffering, or the loss of self, is some sort of moral or physical failing of the person.  They haven’t “accepted” it, they have ongoing litigation or compensation, they must be getting secondary gain.

I am guilty of these kinds of attitudes. I have been guilty of projecting my own frustration at people who haven’t responded the way I think they ought to. I’ve held beliefs that people should get better because I’ve conducted good therapy and if they haven’t made changes it can’t possibly be my fault, it must be “them”.

In a conversation over the weekend I was reminded that despite generally being someone who deals with my pain (and depression) reasonably well, there is a whole hidden conversation that I rarely engage in, and in failing to acknowledge that part of the “what it is like” to live with pain I’ve missed being compassionate towards myself – and probably others.  That conversation for me was about the never-ending presence of pain at all times somewhere in my body. There is never a time when I’m not sore somewhere. I ache in my lower back, I burn between my shoulder blades, my neck is tight, my MCPs feel hot and bruised, my toes are tingling and sensitive.  I have heaviness behind my eyes. My belly hurts.

The point behind posting this is not that I seek comfort or support or anything from anyone else, but simply to acknowledge that although I know my pain is meaningless, it doesn’t reflect harm or damage and doesn’t pose a threat – it is still present. And in being present, in order to do what is good and enriching and valuable, I must use energy to put that pain experience to one side. I need to accommodate that pain, and take account of it at all times.  And that is tiring. It can be more than tiring, it can be exhausting.

In his article, Strong describes a practice that I guess today would be called mindfulness. He describes “listening for, and working within, the language of visceral experience” to help people transform the quality from one of rejection or judgement, into an “authenticating or welcoming stance”.  He suggests beginning by actively focusing in a relaxed manner on the area which most feels pained, using breathing and concentration. Using this focusing to explore the sensory quality of that area anew – a gentle curiosity. To stay “with” the area – and if working with a therapist, the therapist must “stay with” their client by using “clean language” or the client’s actual words to reflect that the experience has been “authenticated”, or verified by co-construction.

Hidden or secret experiences continue to have an impact although they are rarely discussed. While my experience of pain is certainly personal, the impact it has on me and what I do (and even on what I allow myself to acknowledge) is public. Or it can be if I allow it to be so. By hiding my experience from others I show a public face of energy and effervescence that isn’t complete. It’s not authentic. It suggests to others that I may not have this experience. I wonder how often I/we as clinicians make our therapeutic space safe and nonjudgmental enough for the people we work with to get in touch with those aspects of “what it is like” to live with pain that are hidden, are buried beneath the facade of winning, overcoming, battling, being explained away.

And here’s a final kicker: having been open to being vulnerable, how many of you find it hard to read this honesty? What’s your initial response? Do you want to fix it? Find a solution? Offer me something? Do something for me, to me? What would it be like to simply be present and experience the “what it is like” to be utterly fatigued by ever-present pain? Would you be willing to stay with that experience? And what would it mean to you? Your response will, if you let it, tell you a secret.


Shotter, J. (1993). The cultural politics of everyday understanding. London: Basil Blackwell.

Strong, Tom. (1999). Macro- and micro-conversation in conspiring with chronic pain. Journal of Systemic Therapies, 18(3), 37-50.


Using the Theory of Living Well with Chronic Pain

Last week I had the privilege to talk to a national gathering of occupational therapists, physiotherapists, nurses and educators from Arthritis NZ. I presented my Theory of Living Well with Chronic Pain which is the theory of re-occupying self to achieve self-coherence after developing chronic pain.

To give you a bit of background, in this theory which was developed using classical grounded theory, I identified that the thing that goes as soon as pain doesn’t fit the usual acute pattern is the sense of self-coherence – life doesn’t make sense any more. As so many people have said to me about their early experiences with chronic pain, “I don’t feel like myself any more”. The things we take for granted like our habits, routines, the things we can expect from ourselves (like how long it takes to do something, how much we can get through in a day) get scrambled by this invasive experience that takes over. In an effort to make life more coherent, many people stop doing things they enjoy so they can focus on just. keeping. going.

I identified that there are three important processes that help people when they’re making sense of their pain: the first is diagnostic clarity, then symptom understanding, and finally occupational existing. When these three processes are complete and in the presence of both a trustworthy clinician and occupational drive, people begin deciding – deciding whether to seek more treatment so they can return to the old normal, or take the bull by the horns and get on with life as it is. After deciding, people begin occupational engaging, using coping and they can finally begin future planning again.

I have a suspicion that if we asked a person who was living with chronic pain where they would put themselves in this process, we’d get a fairly accurate idea of what their clinical needs might be. Perhaps we’d understand what their focus is, and we’d be able to provide them with input targeting what they identify as important rather than what we think they need.

For example, if we look at the illustration below (andwhere are you“click” for a pdf copy of it), when someone is unsure of their diagnosis we might need to check their understanding of what the diagnosis means. Does it fit with their experience? What’s the prognosis and does the person understand this? Has that label been interpreted accurately? Does the person know that it’s chronic/ongoing and that the pain is now not a signal to stop? If not, we need to think about how to explain this, to help the person make sense of it, and this might be a good time to consider providing the person with information on what pain is.

If the person can’t yet answer the questions related to understanding symptoms, then our job might be to help guide them through the process of experimenting with different activities, noting changes and variations in pain intensity and quality, and fatigue, that occur. I think this is best carried out while doing the basics (or occupational existing).

Doing the basics refers to occupational existing, or just doing what’s necessary. NOT setting new goals, just simply keeping life ticking over. If the person is having trouble with sleep, mood, anxiety, keeping a normal routine going, we’re not going to have much luck in helping them focus on bigger or more valued goals, or getting them to add more obligations to the mix. I’ve indicated sleep and routines as the two areas for the person to think about, but it could be that asking the person “what have you stopped doing” is enough of a prompt – I’m just concerned that, at this stage, the person isn’t yet ready to look ahead, they might just need some breathing space before moving on to deciding.

If the person is currently in the process of deciding, they’re weighing up the costs of looking for more treatment (to help them return to “normal”, or how they were before their pain began). The longer it’s taken to get to this point, the less chance they have of getting back to normal in its entirety. At this point, I think our job is to help the person make this process explicit. Using a decisional balance  chart (similar to the one I’ve linked to, but you can change it), and reflecting on what’s important in the person’s life, we can help people resolve their ambivalence and make their own minds up as to whether they’re ready to get on with life, or carry on looking for treatments. Remember, every treatment carries the risk of failure: so even if you’ve got the newest, most groovy treatment ever, respect that many people would rather not go ahead with an uncertain outcome if they can instead return to doing something that’s really important to them. It’s just that making this decision explicit is rarely carried out.

Once someone’s finished deciding, they can begin doing what’s important or occupational engaging. To enter this process, the person needs to consider what occupations (activities to those of you who don’t use occupational therapy/occupational science language) are most highly valued, make them feel like themselves. While some people are very clear about what it is they want to do most, others might find this a bit of a struggle – especially if it’s been a long time, or if the thing they love the most is something other professionals have told them is “unrealistic”. Here’s my take on this: I think if a person wants something of value, they will find a way to do it. Who am I to disagree? My job is to help them develop ways of achieving it, or at least of achieving the value that this occupation expresses. Each occupation we do is underpinned by values, reasons we believe it’s important. It may not be the occupation itself, but instead may be how we do it that expresses an important value. Our job at this point is to help the person identify the values expressed within this important occupation, and help the person problem solve ways to express those values.

Then most people will begin developing coping skillsso they can do what’s important. Again, our job is to support the person to develop a range of ways to achieve or engage in valued occupations. There’s no “right” way or “wrong” way, there are simply ways to do things that work in that particular context. What’s important is that the person knows plenty of options, and can choose when they fit the context. Where we might need to help is in providing options for coping, and in helping the person develop flexibility in how they apply these strategies. Flexibility might need to come from helping the person think differently about their pain, or about using some of the strategies.

And finally, once a person is beginning to do what’s important and use coping strategies, then it’s time for them to begin future planning. This process (and the other two of occupational engaging and coping) are going to be relevant for the rest of the person’s life. Future planning needs to include setback planning, maintaining behaviour changes, thinking about other ways to keep expressing who the person really is. I think it’s an aspect of pain management that we rarely consider – having chronic pain can mean learning to grow, to keep developing, to become more resilient and allows us to develop different parts of ourselves. It’s more than just “returning to normal” because, after all, what’s normal?

The Clearing

Pain, by any other name, still hurts

Whether we call it “widespread pain”, fibromyalgia, or any of the myriad other names it’s been given over centuries, pain that occurs in all four quadrants of the body and is accompanied by poor sleep, low mood, and “foggy thinking” is common. I can say this because a soon-to-be published meta-analysis of widespread pain (aka fibromyalgia) has found that approximately 10 – 15% of the population (or more accurately 11.8% with 95% confidence intervals of 10.3 to 13.3) report widespread pain of this type (Mansfield, Sim, Jordan, Jordan & Jordan, in press). More women than men report it, and those over 40 years old were also more likely to report it. Curiously (or not) these researchers found differences in prevalence depending on geographic variation and some cultural differences.

Diagnostic labels, and how we determine who is ill and who isn’t, is a field of study I’m fascinated by. Not so long ago, women with “the vapours”, or fainting spells, were considered to have “hysteria” or “wandering womb”. Low back pain has been variously painted as “railway spine”, rheumatism, lumbago, evil humours, “inflammation of the white fibrous tissue of the body” – and yes, the discs, degeneration of the joints, spinal irritation, nerve roots, facet joints …. ad infinitum (Allan & Waddell, 1989). Designating a set of human experiences as a particular form of health problem, and therefore worth treating has enormous implications for the individual, the treater and society. (For a longer paper on historical approaches to back pain, go here.

An interesting study by Adlrich and Eccleston (2000) looked at a social construction of what “everyday pain” means to a wide range of people. Using Q sort, which involves generating a big number of statements about the topic, then asking people to sort those statements into various piles with similar meanings, these researchers found that people believe that pain is a sign of malfunction; pain-as-self-growth (it makes us who we are, pain is essential for survival); pain-as-spiritual-growth (pain is an essential part of being human and makes the sufferer stronger through spiritual growth); pain-as-alien-invasion (pain is something external that invades and takes over who we are); pain-as-coping-and-control (pain gives us necessary information to alert us); pain-as-abuse (a negative experience inflicted upon individuals from powerful others); pain-as-homeostatic-mechanisms (regulates and shouldn’t be fought against); and finally pain-and-power (pain should not be used to obtain power over another).

Back to fibromyalgia. FM has a complex history. I think I mentioned a couple of weeks back that the orthopaedic surgeons I work with said to me “Is that even a thing?” when I mentioned my interest in this widespread pain problem. What? 11% of the population experiences it, and they wonder if it’s a “thing”?! The problem with FM is that there’s no imaging technique, no blood test, no objective method for diagnosing it – but there are a constellation of studies that have given us some ideas about how people with FM differ from those who don’t. Things like the pressure point threshold – the pressure at which pain is reported when a small pointed thing is poked into the skin (without breaking the skin); problems with descending inhibition in quantitative sensory testing; changes in brain structure such as increased functional connectivity. But of course, these things can’t be carried out in routine examinations – or could they?

In the study by Mansfield and colleagues, the justification for conducting a meta-analysis was that to plan interventions and develop a rationale for prioritising the condition requires data. Clinicians need to know the underlying prevalence so they can factor this problem in when they’re trying to diagnose a disorder. If a problem is fairly widespread in the population, and particularly amongst certain groups of people (women, middle-aged, and from certain geographical areas) then it’s worth knowing about, particularly if there are implications for problems, say after surgery.

The question occurring to me is, if this problem is as widespread as indicated by Mansfield, Sim, Jordan & Jordan (in press), why are there so many health professionals who don’t know about it?

Is it because it occurs more in women than men? There’s some research suggesting that when women attend for care, their treatment is different from men (Bernardes, & Lima, 2011, Richardson & Holdcroft, 2009; Stenberg, Fjellman-Wiklund & Ahlgren, 2012; Werner & Malterud, 2003)), and women’s pain from heart attack differs from mens (more diffuse, not always that left-sided, crushing pain), while women may be prescribed more medications for mood management when men are given analgesia. While women are over-represented in chronic pain statistics, they are not studied in experimental studies nearly as often as men. But men find it far more difficult to deal with the “masculinity” scripts within society and their experience of being disabled with chronic pain – it’s very hard to be “manly” and strong when you hurt all over (Ahlsen, Mengshoel, Sobrakke, 2012).

Is it because there are no “objective” diagnostic tests? Fibromyalgia can be a “diagnosis of exclusion”, the diagnosis a person gets given once all the diagnostic tests come back with no abnormality detected. But to me this doesn’t make a lot of sense – there’s no argument about the common headache, yet there’s no diagnostic test for that. I wonder if the old lumbago problem would be in a similar category had the anatomy of the spine not had quite such a lot of impact.

Is it because it’s been a diagnostic hot potato for a long time? What I mean by this is it’s had so many names and proposed mechanisms that no-one believes it’s “real” any more. Well, maybe, but are back pain, CRPS or whiplash any different?

I’m not sure why fibromyalgia has such deniability amongst a group of health professionals, and I’m sure cynics reading this will suggest something about not being able to use a scalpel on it, but I’m not convinced it’s simply that, either. The thing is, fibromyalgia by any name is common and has profound consequences for people who live with it. It’s hard to make sense of. It defies a simply Cartesian “body/mind” split. It exhausts and fogs and constrains life for many people. It complicates recovery from surgery, influenza, even concussion. It’s hard to explain – drawing on the term “central sensitisation” can bring on arguments about tautology (how can pain be explained by the presence of pain?). There are few treatments, and these have a very limited effect.

At the same time as wanting fibromyalgia to be recognised by my colleagues, I don’t want to suggest a hard-out diagnosis awareness campaign. The risks of people being mislabelled, or diagnosed correctly but then unhelpfully managed or even given a label that invites derision, is at this point in history far too great. Mostly I’d just like people living with fibromyalgia to realise that although it’s “real” it doesn’t need to define who we are.



Ahlsen, Birgitte, Mengshoel, Anne M., & Solbrække, Kari N. (2012). Troubled bodies – troubled men: a narrative analysis of men’s stories of chronic muscle pain. Disability & Rehabilitation, 34(21), 1765-1773. doi: 10.3109/09638288.2012.660601

Aldrich, Sarah, & Eccleston, Chris. (2000). Making sense of everyday pain. Social Science & Medicine, 50(11), 1631-1641. doi:

Allan, David B, & Waddell, Gordon. (1989). An historical perspective on low back pain and disability. Acta Orthopaedica, 60(s234), 1-23. doi: doi:10.3109/17453678909153916

Bernardes, Sonia F., & Lima, Maria Luisa. (2011). On the contextual nature of sex-related biases in pain judgments: The effects of pain duration, patient’s distress and judge’s sex. European Journal of Pain, 15(9), 950-957.

Bernardes, Sonia F., & Lima, Maria Luisa. (2011). 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.

Mansfield, Kathryn E., Sim, Julius, Jordan, Joanne L., & Jordan, Kelvin P. A systematic review and meta-analysis of the prevalence of chronic widespread pain in the general population. Pain.

Richardson, Jen, & Holdcroft, Anita. (2009). Gender differences and pain medication. Women’s health, 5(1), 79-90.

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2012). “Getting confirmation”: gender in expectations and experiences of healthcare for neck or back patients. J Rehabil Med, 44(2), 163-171. doi: 10.2340/16501977-0912

Werner, Anne, & Malterud, Kirsti. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409-1419.

Niagara Falls

You are unique, and if that is not fulfilled, then something has been lost: Martha Graham

In an era in healthcare where administrators prize standardisation, algorithms and consistency, it’s no wonder that in chronic pain management there are concerted efforts to make a standard treatment recipe to suit everyone. After all, there are common things that people living with pain need: accurate information about pain, accurate information about tissues and how they contribute to pain, assurance that pain doesn’t mean ongoing damage, and being introduced to some safe movements that don’t threaten an already agitated nervous system. There’s even a call for clinicians to use a kind of curriculum to make sure all the important bits are covered based on the individual’s presentation. This is valuable stuff!

But, I think standardisation* is both an admirable and a futile effort. Admirable because we know there are so many clinicians and patients who don’t get told much  of this information. Admirable because it would be great to know that once given, this information should make a difference to the person living with pain. Admirable because it’s easier to remember a “standard” list of topics, or a standard management approach than to generate a fresh new one every time a person comes in to see you. But I think a standardised approach (used unthinkingly) might not be the most efficient way, it could almost be futile, and here’s why.

*(note: not the curriculum for pain education, but the notion of a standard list of topics that every person with pain should have covered)

I’m a nerd. That’s right, when I get on a topic I love, I can talk for hours! I have seen the eye rolls, and that subtle slump that tells me that I’ve gone on too long. I think there’s a very fine line between being enthusiastic and being too intense, particularly when it’s a topic I love but maybe the other person is less enthralled with. I know I’m not alone in this enthusiasm (thank goodness!) but I also know that I need to be aware of all those cues that tell me when someone has had enough and I’m boring them. If I want to do more than lecture, I need to go about my conversations in a different way.  I have to actually converse not harangue!

Conversations, especially where one person is knowledgeable about a subject and the other isn’t, are really guided discoveries. A guided discovery is where one person asks a question and the other person, who knows the answers, is able to answer. The questioner listens because he or she wants to find out. Various skills underpin conversations – mirroring body language, use of gaze (looking at the person, looking away), using metaphors and those little “listening cues” like “uhuh” or “mmmm” or “tell me more”. The thing about conversations is that although one person is finding out about the other, in fact most times both parties will learn something new.

We’d expect the person asking the questions to learn something new, but the person responding? How do they learn something new? There’s quite a large body of research that considers conversation to be one of the main ways humans develop meaning, and that these meanings are then reflected in the way we perceive events and act on them (Strong, 1999). In other words, as we converse with one another we develop a shared understanding of the subject under discussion – or at least it’s possible to do so.

This view is part of a social constructivist view of reality.  Strong’s paper states that people living with chronic pain experience suffering when “chronic pain sufferers and others are engaged in conversations that yield no differences in meanings for the participants” (Strong, 1999, p. 39). In other words, when one person is not heard, or the conversations they have with others don’t influence the beliefs or meanings they have, the conversations themselves contribute to suffering.

It’s not hard to see that if one partner in the conversation isn’t really listening; or if the questions being asked are only done to confirm a prior belief; or if the person answering doesn’t think the other is listening – well, neither person will change his or her understanding. And I think this is what we risk if we use a standardised way to provide information to people.

I can see that instead of being a conversation in which both parties learn, “educating” could become an opportunity for one person to lecture the other. Now I know this isn’t the intention of pain neurophysiology education. I know that it’s intended to be conducted within the framework of genuinely wanting to help the person living with pain view their pain as less threatening and less mysterious.

I said before that I think standardising a “pain education” for people living with pain might be futile. This is why: when each person has a unique understanding of their body, their pain and their life, and when they’ve had a unique pathway to getting to see a clinician, they’ve probably also had any number of unique conversations in which their understanding of their pain has been changed. They’ve taken a bit here, and a bit there. A piece of this and a dab of that. And then they’ve infused this with their own experiences and arrived at their own theory for why they have pain. Each one of those thoughts and beliefs and attitudes needs to be revisited in the light of new information. This is not something that will shift with just one “info dump”.

What I’ve learned from motivational interviewing and case formulation (thanks psychology!) is that until the person is ready to hear what we have to say, they’ll pick up on the parts of what we say that they want to hear. What this means is that we need to give them the respect they deserve for making their own theory for their pain, and we need to listen to what it is and how they’ve developed it. It makes sense to them. And we need to ask for permission to introduce a new idea. If we jump right on in there without being given permission I know how that will go down! In a few cases the person will be absolutely fine with it: they were ready to hear something new. But in many cases, we’ll be generating resistance because we’re challenging something the person has learned for him or herself.

I think we also need to recognise that people pick and choose the bits of information that resonate for them. This means their understanding of pain is unique to them. We know that reviewing existing knowledge in light of new information is a really good way for students to develop a deep understanding of their subject matter – the same occurs for people learning about their pain. By gently guiding people through both their current understanding, and then through a combination of information and experience, they will draw their own conclusions about what this new material means. Our “education” needs to be a guided discovery together with the person so they can make sense of their experience in the light of new information.

Some resources for guided discovery: – teaching physical education

Socratic questioning – Padesky

Priory – guided therapy

Psi – Balancing thoughts

Strong, Tom. (1999). Macro- and micro-conversation in conspiring with chronic pain. Journal of Systemic Therapies, 18(3), 37-50.