Chronic pain

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.


“Tell me like it is, Doc” – What to say when you need to tell someone their pain is probably ongoing

About 30 or more years ago I was diagnosed with chronic pain. I’d had low back pain for a couple of years and I was finding it SO hard because of my work in Older Person’s physical rehabilitation. I had treatment after treatment with no change in my pain. I had an X-ray that told me I had a “transitional” vertebra. I thought this explained why my pain persisted and I was hoping someone would be able to “unstick” this vertebra and my pain would be gone. I was referred to a chronic pain management centre and the wonderful Dr Mike Butler, Rheumatologist and pain specialist there told me “There isn’t a medical answer to your pain problem.” Luckily for me he didn’t leave it there – he suggested I read The Challenge of Pain by Melzack and Wall.

But I will admit, I walked away from that appointment feeling absolutely devastated, thinking “I’ll have to live like this forever”.

What I didn’t know at the time was that the way Dr Butler gave me this news is a rarity. I am so grateful that he did, even though I was completely floored and had no idea about what I could do to get on with life. (I began searching the libraries for information on chronic pain, and came across a book by Connie Peck in which she described a behavioural approach to increasing function – and I used this after having devoured the Melzack & Wall book).

Things that were done well:

  1. My physical examination results were fully described and explained to me. While I didn’t have any beliefs about possible cancer or ending up in a wheelchair, it was good to know that my examinations were completely normal with the exception of allodynia and widespread pain over my entire back.
  2. I was given the news pretty straight. Being told “there isn’t a medical answer to your pain problem” meant I stopped looking for the complete cure. And I never once got the suspicion that anyone thought the problem was psychological, fabricated, or that I was just a bit pathetic.
  3. Being given additional resources that gave me information over and above the basics really helped. The book by Melzack and Wall was a real stretch for me at the time, lots of explanations I didn’t fully understand – but it satisfied my curious mind, and gave me a full explanation that helped me make sense of what was going on. And it opened the door for me to realise that my pain wasn’t an indication of ongoing damage. It also gave me an understanding that what I believed, thought and felt could influence my pain. And that was a powerful thing.

If you’d asked me whether I “accepted” my pain, I think I would have clubbed you! I did NOT want this pain. I was still looking for things to reduce my pain – or at least not flare it up. The realisation that my pain would do what it wanted, when it wanted, was something I could only learn over time. And this is an important point: there are some things we need to go through as part of a process. Simply telling someone something does not inevitably mean it’s going to hit home at that time, unless the person is ready (think stages of change here).

If I frame this process within the findings from my research, the first part of learning to live well with pain is making sense. Making sense requires diagnostic clarity, and part of that is having a prognosis. This helps shape future expectations. It’s incredibly difficult to plan a future when the future is hazy. Delaying the point at which the ongoing nature of persistent pain is made explicit seems to me to be delaying the point at which the future becomes clearer – and I think this in turn prolongs disability and distress.

Drawing from my reading around the subject, I think the following might be a useful and pragmatic approach to advising someone that their pain is likely to remain. I hope people living with chronic pain will chime in here and help me out – what would this approach have been like for you?

  • Ensure examinations are explained – especially what you’re looking for, what you’ve found, and what this means. And particularly explaining what negative findings don’t mean.
  • Avoid looking for the mythical and improbable “rare” disorder. Especially if this means delaying the point at which you have to say “and this pain isn’t likely to go away”. I think this is something many medical practitioners are afraid of. Rare disorders are just that: rare. And most of the ones that will kill or disable have very clear indicators apart from ongoing pain. You KNOW this, so let your patients know this.
  • Find out the main concern of your patient. In my case, it wasn’t that I was going to die or end up in a wheelchair, it was much more about “how am I going to live like this – suffering – for the rest of my life!” The “suffering” part was the REAL problem, not the pain per se.* What a shame so few health professionals even bother to find out about their patient’s main concern – maybe it’s feeling old before your time, maybe it’s about becoming a parent, maybe it’s about being just like my mother, maybe it’s about sleep, work – whatever.
  • Directly address the main concern of your patient. Reflect that you’ve heard what their main concern is. Say it back to them, and yes, even use cliched phrases like “It sounds like” – whatever you do, make it clear you’ve heard the person’s main concern. Then begin to discuss what can be done to address that concern. It might take another appointment to do this, but that’s a whole lot better than sending your patient back home without having had his or her concerns understood – or worse, to ignore those concerns and send your patient off for another round of treatments that just don’t help them resolve whatever that concern is.
  • Give space and time for your patient to get their head around this new reality. Do this by letting them know, directly and clearly, that you’ll be there for them while they do this. You know, it might mean not “treating” the person for a couple of appointments, but instead, giving your patient the respect of providing a safe space for them to be there and process what’s going on. Don’t just begin “your” treatment programme as if nothing has happened. And don’t just send the person off without making a time to catch up again. Remember, treatment is as much about an interaction as it is about the therapeutic whatever that you use (Benedetti, 2013).

I have no idea if this approach is the right one, but it seems to me to address some of the things that people living with pain have told me. They’ve said things like “no-one ever told me it would go on”, “I just got pills but I was worried about how I could stay at work”, “I didn’t know why I was doing exercises”, “no-one bothered to find out how my relationship was going”, “they just wanted me out of the office as quickly as possible”, “I was in the too hard basket”.

The most precious thing in life is time. Perhaps we health professionals need to value the time we spend with people a little more than the procedures we carry out. Perhaps reimbursers could equally see that the active ingredient in most treatments is the interpersonal part – and maybe this should be funded well.

*Suffering, to quote Eric Cassel (1999) is about the threat to self-concept – that I would not, could not, do the things that express who I am. Now I don’t think my doctor really addressed this, and I am lucky I’m a geek and love reading, because I learned this through the books I devoured. What I learned was that I could express my self-concept despite my pain. I just had to learn to do things differently.


Benedetti, Fabrizio. (2013). Placebo and the New Physiology of the Doctor-Patient Relationship. Physiology Reviews, 93(3), 1207-1246. doi: 10.1152/physrev.00043.2012

Cassell, Eric J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi: 10.7326/0003-4819-131-7-199910050-00009


blossom of snow

Deciding when to say when: pain cure? or pain managed?

I think the subject of this post is the singularly most important yet neglected topic in chronic pain research today. When is it time to say “All this looking at pain cure, or reducing your pain isn’t working, it’s time to accept that pain is going to part of your life.” It’s difficult for so many reasons whether you’re the person experiencing the pain, or the clinician trying to help. It’s also incredibly important for everyone including our community.

Cures for pain that persists are not easily found. One possibility is that the underlying disease or dysfunction has not yet been treated – pain in this case is the experience we have when there’s an unresolved threat to body tissues. Find the source of the problem, treat it, and voila! No pain.

Another possibility is that a new or groovy treatment has been developed – something extraordinary, or something that’s being applied to a different problem or something that’s emerging from the experimental phase to clinical practice.  This means clinicians need to have heard about it, maybe will have had to think hard about their clinical reasoning, have developed skills to apply it, and be ready to talk about it with the person they’re treating.

In the case of much chronic pain, pharmacological approaches simply do not work. Machado and colleagues (2009), in a large meta-analysis of placebo-controlled randomised trials, found 76 eligible trials reporting on 34 treatments. Fifty percent of the treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”, while Machado, Maher and colleagues found that paracetamol was “ineffective” for reducing pain intensity or improving quality of life for people with low back pain, and although there was a statistically significant result for paracetamol on osteoarthritis pain (hip or knee), this was not clinically important (Machado, Maher, Ferreira, Pinheiro, Lin, et al_2015).  Clifford Woolf said “most existing analgesics for persistent pain are relatively ineffective… the number of patients who are needed to be treated to achieve 50% reduction in neuropathic pain in one patient is more than four – a high cost for the three unsuccessfully treated patients and their physicians” (Woolf, 2010).

Woolf’s sentence ends with an important statement: A high cost for the three unsuccessfully treated patients and their physicians. I have emphasised the final three words, because this might be the most difficult to process. It’s hard for clinicians to say “I can’t reduce your pain”, and “there isn’t a cure”. It’s incredibly hard. And it’s perhaps because it’s so hard that I’ve found very little published research looking at the way clinicians go about telling people their pain is likely to be ongoing. It’s like a taboo – let’s not talk about it, let’s pretend it doesn’t happen, after all it doesn’t happen often.  Really?

Amongst allied health (I can’t bear to use the word “non-medical”), and in particular, physiotherapists, there continues to be a push to address pain intensity and (ultimately) to cure pain.  Innovative treatments such as mirror therapy, graded motor imagery, therapeutic pain neuroscience (we used to call it psycho-education in the 1980’s when I first started working in this area), reducing the threat value of the experience have all come into their own over the past 15 years or so. Even long-standing pain problems apparently respond to these approaches – people cured! Who wouldn’t be keen to try them?

Most of these latter treatments are based on the idea that our neurology is plastic; that is, it can change as we change input and thoughts/beliefs about what’s going on.  Unfortunately, the systematic reviews of trials, and at least one “real world” trial of graded motor imagery haven’t shown effects as great as promised from the early research (eg Johnson, Hall, Barnett, Draper, Derbyshire et al, 2012). There are sure to be people who can point to amazing outcomes in the people they treat. I’m certain that it’s not just the “treatment” but an awful lot to do with the person delivering the treatment – and the treatment context – that might make a difference to outcomes.

But where this all leads me to is who makes the decision to stop chasing pain reduction and pain cure? When does it happen? What’s the process? And what if we treatment providers are actually prolonging disability out of the goodness of our hearts to find a cure?

Let me unpack this a little.

In my research, several important factors led to people deciding to begin flexibly persisting (and getting on with life as it is, not as it was, or might be).

  • The first was knowing the diagnosis and that it would not be completely cured but could be managed.
  • The second, that hurting didn’t mean harm (pain is just pain, not a sign of ongoing damage).
  • The third, that there was something important the person wanted or needed to do to be themselves.

There were other things as well, like having a clinician who would stand by the person even if the person didn’t “do as the Doctor ordered”, and developing their own personalised model or explanation for their pain as it fluctuated from day-to-day. BUT the single most important factor was knowing that the problem needed to be managed because there was no cure. Knowing this meant that energy used chasing a cure was redirected towards learning to live well and be the person they were, rather than a patient or being dominated by pain.

Unfortunately, I think that many clinicians confuse the idea of managing pain with that of resignation to a lesser life. Even the wonderful Lorimer Moseley and crew wrote recently that “CBT literature seemed to focus on this idea of ‘pain is now unavoidable so it is now time to learn how to cope with it.’ He goes on to argue that because a CBT approach focuses on thoughts and beliefs (much like Explain Pain does), it’s not incompatible with the idea that the plastic brain can learn to reduce the threat value even further to ultimately “helping them live well with less pain, or perhaps without any pain at all.”

Here’s my concern: Right now there are many people living with chronic pain who have lost their sense of hope. They’ve pursued pain cure after pain cure, and in doing so, they’ve lost normal routines and habits, lost their usual occupations (activities), stopped being around people, stopped working, and have suffered in the true sense of the word – they’ve lost their sense of self. While I applaud the efforts of researchers like Moseley and colleagues, and I think we must continue to seek treatments to reverse the neurobiological underpinnings of pain, at the same time I think we need to look at the psychological and social aspects of our attitudes and expectations towards experiencing pain. And we must think of the negative effects of our emotional response to seeing another person who is experiencing pain.

Is it so terrible to experience pain every day? Speaking as one who does – despite my knowledge of neuroplasticity – my pain doesn’t represent a threat. It’s just an experience. It’s there. I notice it, I can feel it. And the participants in my research similarly acknowledged pain as present – but it didn’t have the emotional primacy that pain can represent before it is explained. In fact, some of the participants said they’d learned important things because they’d had pain. A lot like having a mood disorder (that must be managed), or diabetes (that must be managed), or heart disease (that must be managed), or respiratory disease (that must be managed), perhaps it’s OK to have pain – that must be managed. Because until our research has advanced a LOT further than it has, there are an awful lot of people living with chronic pain, and who will continue to live with chronic pain. And even more sadly, there are an awful lot of people who don’t even get the opportunity to know that it’s possible to live well despite experiencing chronic pain because we (as part of society) still don’t accept that pain can be present without it being a threat.

Sometimes I wonder at our (clinicians and researchers) blind spot. We just don’t seem to be ready to accept persisting pain as something that can be lived with. Is it time to look at our own discomfort with allowing pain to be part of life?


Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: a systematic review and meta-analysis. Journal of Pain, 14(1), 3-13.

Cossins, L., Okell, R. W., Cameron, H., Simpson, B., Poole, H. M., & Goebel, A. (2013). Treatment of complex regional pain syndrome in adults: a systematic review of randomized controlled trials published from June 2000 to February 2012. European Journal of Pain, 17(2), 158-173.

Johnson, S., Hall, J., Barnett, S., Draper, M., Derbyshire, G., Haynes, L., . . . Goebel, A. (2012). Using graded motor imagery for complex regional pain syndrome in clinical practice: failure to improve pain. European Journal of Pain, 16(4), 550-561.

Machado, LAC, Kamper, SJ, Herbert, RD, Maher, CG, & McAuley, JH. (2009). Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials. Rheumatology, 48(5), 520-527.

Machado, Gustavo C, Maher, Chris G, Ferreira, Paulo H, Pinheiro, Marina B, Lin, Chung-Wei Christine, Day, Richard O, . . . Ferreira, Manuela L. (2015). Efficacy and safety of paracetamol for spinal pain and osteoarthritis: systematic review and meta-analysis of randomised placebo controlled trials (Vol. 350).

Woolf, Clifford J. (2010). Overcoming obstacles to developing new analgesics. Nature Medical, 16(11), 1241-1247. doi: doi:10.1038/nm.2230

chilly lake

“Sleep is my drug, my bed is the dealer, and my alarm clock the police.”

Sleep.  The “little death”, the “golden chain that binds health and our bodies together”, “sleep is a hint of lovely oblivion”.

There’s no doubt that having pain and sleeping well just don’t go together – having trouble with sleep is a common problem for people living with pain.  One study reports that over a period of 26 months, 67% of people living with chronic low back pain experienced poor sleep (Axen, 2015). More than this, in the same study one single day of bothersome pain increased the risk of reporting 2 to 7 nights with disturbed sleep by two, and people with chronic low back pain were more likely to report poor sleep than those with acute low back pain.

In another study, (Harrison, Wilson & Munafo, 2015) teenagers from a large cohort study in the UK were surveyed to identify the presence of sleep problems, mood problems and pain problems. 21% of the population reported trouble with sleep, 5.5% reported pain problems, and 2.8% experienced both pain and sleep problems.

And in yet another study, participants with fibromyalgia had significantly shorter and more frequent wake bouts than those with primary insomnia, and the researchers argue that sleep disruption in fibromyalgia does not lead to prolonged periods of wakefulness, but seems to be a disorder of the sleep system whereby internal or external events repeatedly disturb and fragment sleep, and suggest the resulting increased frequency of awakenings may be, at least in part, due to pain, as studies have shown that reducing pain also improves sleep.

These researchers also considered that there is a relatively intact homeostatic drive in participants with fibromyalgia that causes them to quickly return to sleep after an awakening. This is evidenced by shorter initial sleep latency (LPS) and increased slow wave sleep, in addition to shorter duration of wake bouts compared with individuals with primary insomnia (Roth, Brown, Pitman, Roehrs & Resnick, 2015).
People who experience chronic pain can often experience depression, while those who have depression commonly experience sleep disturbance. There are suggestions that common neurobiological pathways exist between all three states.  Atrophy of the hippocampus and increased limbic area activation has been reported across all three conditions, while increased limbic activation occurs in all three conditions as well. Neurochemical changes are also found in all three conditions: HPA-axis hyperactivity has been found, with subsequent alteration to glucocorticoid receptor downregulation, monoaminergic neurons are inhibited as a result of glucocorticoid-induced monoamine depletion, thus reducing inhibitory drive and therefore increasing pain.
Slow wave sleep has been found to inhibit the HPA axis and cortisol secretion, with wakefulness associated with increased cortisol which could lead to increased HPA activation and subsequent elevation of pain (Boakye, Olechowski, Rashiq, Verrier, Kerr, Witmans, Baker, Joyce and Dick, 2015).
Essentially it seems clear that there are neurobiological factors that are implicated in chronic pain, depression and poor sleep.
The importance of this finding shouldn’t be under-estimated. In qualitative studies, participants report that one of the most challenging aspects of dealing with chronic pain is handling fatigue and sleep-related problems (Turk, Dworkin, Revicki, Harding et al, 2008). Pain not only affects sleep quality, but because it intrudes on cognitive processing, there is perceived effort involved in just handling day-to-day situations.
What to do about it…
Well, here’s the thing. Most of the ways GP’s manage sleep problems is through short-term prescriptions of hypnotics such as zopiclone and occasionally benzodiazepines. While there are some useful short-term effects from these drugs, chronic pain is not a short-term problem. Sleep disturbance associated with chronic pain is thus less likely to be helped by simply increasing the length of prescription – these drugs are not intended to be taken long-term. Other medications are used primarily for their pain reducing effects (such as gabapentin and the tricyclic antidepressants), but happily, also possess sedative effects.  These can be taken long-term – but may not work for everyone.
Alternatives include using cognitive behavioural therapy for insomnia. Actually, there are two alternatives – CBTi and sleep restriction, and in some cases, both together.
CBTi is a brief form of cognitive behavioural therapy that has been shown to be highly effective, and focuses on the thoughts and beliefs people hold about sleep, the habits people have associated with sleeping, and associations between habits, thoughts and sleep onset.  Sleep restriction, on the other hand, reduces the amount of time people are actually in bed overall, with the aim to consolidate sleep, and reduce the amount of time spent awake while in bed. Sleep restriction also influences the sleep architecture, so that people can descend into deep sleep more quickly, while reducing the amount of time in REM sleep and lighter levels of sleep.
A final alternative is to use mindfulness to help people become aware of their thoughts and habits about sleep, but instead of challenging or refuting them, learning to attend to them with curiosity and kindness, while at the same time reducing the amount of time awake while in bed.
As a long-time insomniac (now recovered!), I am well familiar with being awake when all else is silent, and on the troubles of trying to get off to sleep while my bed partner snoozes. I also know how hard it is to get back off to sleep after waking in the middle of the night.
Here’s what I did:
  1. Used deep relaxation hypnosis to help establish the association between being relaxed and being in bed. I used this every night for ages, then I realised that I could do the hypnosis “in my head” rather than having someone else’s voice do it for me.
  2. I got out of bed if I hadn’t been to sleep in about 30 minutes. Especially during the middle of the night! Not easy, but worthwhile so I didn’t lie there trying hard not to fidget and wake my partner. I found that if I tried to stay in bed I’d end up being so aware of my fidgeting and so strung out by trying NOT to fidget that I’d be wide awake and stressed. Not the best way to sleep!
  3. Keeping the lights down low, and reading a book I’d already read was the next step once I’d got out of bed. That way I didn’t need to read every word, and it didn’t matter if I snoozed a little.
  4. After about 30 minutes or so, I’d slide back into bed with my mind full of the story rather than being frazzled by not sleeping. And I’d return to my relaxation and breathing and gradually slip off to sleep.
  5. More recently I’ve kicked the mental hypnosis/relaxation habit, and I now go to bed and simply roll over and slow my breathing and fall asleep. Learning to do this without using the hypnosis has been fabulous so I no longer need to worry about being awake at 3.00 in the morning! If I do wake, I head to the toilet, do my business, then slide back into bed and roll over and slow my breathing.

What I’ve learned from this is that the main habit I needed to learn was how to put myself to sleep. I also learned to remind myself that the occasional night with poor sleep is OK, I can handle. And if my sleep really turns to custard I have the skills to manage it myself.

I can’t stop the fact that fibromyalgia means there are some changes to the way my brain processes information, and that this means I’m likely to have poorer sleep than many other people. What I can change is how much I allow that to affect me. And by learning how to go off to sleep by myself, without the external aids, has meant I actually do fall asleep more quickly and don’t feel the effects of disrupted sleep to the same extent as I used to.




More than something to blame when the treatment doesn’t work

A friend of mine told me that during her physiotherapy training when they discussed “psychosocial” factors it was usually in the context of explaining why a treatment didn’t work.  This still happens. Even well-informed and scientifically savvy people can unintentionally “blame” those pesky psychosocial factors for getting in the way of complete recovery. What do I mean? Well, let’s think about it: when we’ve done the “explaining” or “educating” – and the person still doesn’t understand and/or their pain doesn’t reduce, what’s our explanation?

We know that pain is an experience, not a separate thing to be treated, but the experience an individual has when his or her brain determines there is a threat to the body (and that threat is more important than other competing goals). We also know there are numerous mechanisms underpinning this experience, many of which are biological. But what we are always left with is the fact that we cannot know anything about this other person’s world except through (1) their behaviour and (2) our interpretation of their behaviour.

I’ve emphasised this because recently I’ve heard one registration board suggesting that a profession should not talk about pain, nor consider psychosocial factors because their domain of influence is bodily tissues.

I’ve also emphasised this because in our efforts to become all sciencey and sound (at least) like we know what we’re talking about, I think we may have forgotten that the only reason we know someone is sore is because they are doing something that we interpret as a signal that they’re sore. And that this occurs within a social setting that has emerged from a combination of historical practices and assumptions, and we are part of that social setting.

The biological substrates for our experience of pain have received the lion’s share of research attention and funds. What has received rather less is understanding some of the social aspects – what individuals learn throughout their life, including the assumptions we develop about what is “normal” and what is not. Unique family and cultural factors influence each individual’s experience – what does this person pay attention to? What does this person ignore? When this person recognises something as “not normal” what is the usual way of dealing with it? Who does this person first see for treatment?

More than this, what about the research looking at treatment provider’s decoding and response to the social communication of the person seeking treatment? We know, for example, that healthcare providers who view video vignettes of people displaying pain behaviour with no medical evidence but with psychosocial factors rate those individuals as experiencing less pain and interference, they have less sympathy, expect medication effectiveness to be less, and those individuals were more likely to be rated as potentially trying to deceive the treatment providers (De Ruddere, Goubert, Stevens, Deveugele, Craig & Crombez, 2014). These responses appear to use both automatic (unintentional, reflexive) and controlled (intentional, purposive) neuroregulatory systems. Observers (ie health professionals) also incorporate automatic (unintentional, reflexive) and controlled (intentional, reflective) reactions. We seem more likely to demonstrate instant ‘‘visceral’’ emotional reactions to unintentional, reflexive expression, while controlled expression characterised by purposive (deliberate) behaviour appears more likely to suggest to health professionals (or observers) that we should think a little about the purpose behind that individual’s pain expression (Craig, Versloot, Goubert, Vervoort & Crombez, 2010). The point is: this occurs even when we know about it, and even if the individual is experiencing pain, and even though the individual is only trying to get the treatment provider’s attention!

Pain behaviour as independent from the individual’s experience of pain is one of the key features of the behavioural model of pain. Pain behaviours were what Fordyce and Loeser and Turk and the very great original thinkers about chronic pain management first thought could and should be dealt with. The reason? Because despite all the surgical and pharmacological treatments available in the late 1960’s, 70’s and 80’s,  many people were still left experiencing pain and were also highly disabled by it. By helping people reduce their pain behaviour (eg stop guarding that body part, start moving more quickly and fluidly, be more relaxed, groan less) they noticed that people were also reporting that their pain bothered them less.

Cognitive behavioural therapy (or a cognitive behavioural approach, to be more accurate) incorporated more “education”, or helping people understand the mechanisms involved in their experience of pain, helping them understand the difference between hurting vs doing damage. A CBT approach meant people were acknowledged as being able to think differently about their pain, reduce their distress and begin to do more. A CBT approach combined education with behavioural experiments and encouraged people to get on with life.

Much more recently we have physiotherapists deciding that giving people pain neurobiology education (sounds almost exactly like the CBT education/explanation to me) is really good and reduces the threat value of the experience. And combined with graded reactivation, exposure to doing things that have been avoided, using methods to reduce distress and by avoiding flare-ups of pain, people are helped.

Two or three important points for me:

  1. Health professionals need to be aware of their own psychosocial responses/background/biases when they observe another person who is indicating they are sore.
  2. If we are two people interacting, all the messy psychosocial factors are immediately present – whether we attend to them, or not.
  3. Given how important those factors are in both our response to another person and their response to treatment (eg placebo, expectancy) it is critical that we integrate effective communication skills into every clinical interaction.

And probably another important point:

In the enthusiasm for pain neurobiology education and the potential for the person to no longer experience pain, we need to remember that reducing disability is arguably more relevant than reducing pain. Despite the impressive results reported by clinicians and some researchers there are many many people who continue to live with chronic pain. As clinicians we may even inadvertently delay recovery if our focus is inappropriately on pain reduction. I say this because there is SUCH clear evidence that pain intensity is less of a factor in ongoing disability than unhelpful beliefs and avoidance (Froud, Patterson, Eldridge, Seale, Pincus, Rajendran et al, 2014; Shaw, Campbell, Nelson, Main & Linton, 2013; Wilkens, Scheel, Grundnes, Hellum & Storheim, 2013).

To conclude, it seems to me that it’s high time for health professionals to take a hard look at what they consider to be “their” domain of concern. Not only must we avoid “blaming” psychosocial factors for poor outcomes from treatments we provide, we also must begin to recognise our own biases as we work with people living with pain. One of these biases is the temptation to believe that we are not influenced by our own psychosocial factors. Another is to recognise that delicate moment when it’s time to take our attention away from reducing pain and towards reducing disability. We need to elevate the status of effective communication – not just “can I make myself understood” and “can I establish rapport”, but that much more nuanced scope of implementing reflective listening, truly hearing our clients, and responding in a way that upholds client choice and self efficacy. I think this belongs to all health professions, not simply those tasked with dealing with “psychosocial” factors.


Craig, K.D. (2015). Social communication model of pain. Pain, 156(7), 1198-1199.

Craig, K.D., Versloot, J., Goubert, L., Vervoort, T., & Crombez, G. (2010). Perceiving pain in others: Automatic and controlled mechanisms. The Journal of Pain, 11(2), 101-108. doi:

De Ruddere, L., Goubert, L., Stevens, M.A.L., Deveugele, M., Craig, K.D., & Crombez, G. (2014). Health care professionals’ reactions to patient pain: Impact of knowledge about medical evidence and psychosocial influences. The Journal of Pain, 15(3), 262-270. doi:

Froud, R., Patterson, S., Eldridge, S., Seale, C., Pincus, T., Rajendran, D., . . . Underwood, M. (2014). A systematic review and meta-synthesis of the impact of low back pain on people’s lives. BMC Musculoskeletal Disorders, 15, 50.

Shaw, W.S., Campbell, P., Nelson, C.C., Main, C.J., & Linton, S.J. (2013). Effects of workplace, family and cultural influences on low back pain: What opportunities exist to address social factors in general consultations? Best Practice & Research in Clinical Rheumatology, 27(5), 637-648.

Wilkens, P., Scheel, I.B., Grundnes, O., Hellum, C., & Storheim, K. (2013). Prognostic factors of prolonged disability in patients with chronic low back pain and lumbar degeneration in primary care: A cohort study. Spine, 38(1), 65-74.

forest walk

Life seems but a succession of busy nothings – Jane Austin

We hold some very contradictory opinions about being busy. On the one hand, Socrates is reported to have said “Beware the barrenness of a busy life”, and on the other Dale Carnegie is quoted as saying “Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.”

Pacing, one of the cornerstones of “traditional” pain management, is intended to moderate both under-activity (avoidance) and over-activity so that important things can get done without running out of puff – or having an enormous flare-up of pain with subsequent crash into a jellied lump. Yet people who cope well with pain, and ourselves if we’re honest, are often guilty of doing more when we are highly  motivated to do something (or want to achieve a specific goal), and doing less afterwards so we can recuperate.

What is an optimal level of activity for a person living with chronic pain and why might this be important?

I’ll address the second question first. Fatigue is experienced by many people living with chronic pain. Fatigue is a term “used to describe a period of extreme tiredness, as a result of emotional strain, physical exertion, boredom or a general lack of rest and sleep” (Psychology dictionary) People living with chronic pain often develop a sense of fatigue as part of their pain, and some authors believe that not only is it because of disruption to the delta sleep phase (the deepest sleep we achieve), but also because some brain activity continues all the time as the neuromatrix processes potential threat from the painful parts of the body. This activity may result in changes to brain structure, although brain structures may actually cause some of this effect (Baliki, Geha, Apkarian & Chialvo, 2008; Wiech, Ploner & Tracey, 2008). The practical impact of experiencing fatigue is to reduce cognitive efficiency: it takes longer to solve problems, and even boring tasks can feel very difficult.

Some interesting facts: the effect of fatigue on performance differs depending on an individual’s beliefs about fatigue – there is a thing called “fatigue catastrophising” which, like pain catastrophising, means individuals unduly and negatively assess the effect of fatigue on their ability to do things. Being fatigued influences the ability to switch tasks from one task to another, fatigue reduces the ability to ‘change tack’. Interestingly, being bored increases the likelihood of experiencing fatigue. There is an optimal level of stimulation in which we operate. Stress, while initially increasing alertness, over time results in increased fatigue.

So in terms of the importance of identifying and developing an optimal level of activity, it seems that for people living with chronic pain, there might be a need to carefully work out just what level of activity is sufficient to avoid boredom but not so much as to stimulate unhealthy levels of fatigue.

And now, what is an optimal level of activity for a person living with chronic pain?

This question is a much more difficult question to answer, not only because “optimal” will depend a great deal on an individual’s satisfaction with his or her activity level, but also because it’s difficult to measure, definitions about activity level are unclear, and because there are many assumptions about activity levels that have been retained since the early operant conditioning model of pain was proposed by Fordyce. In this model, avoidance develops by reducing activity levels as a way to reduce pain (or prevent it from increasing), while over-activity is thought to occur when activity increases pain resulting in avoidance. Some research suggests that over-activity is an ongoing habit used by individuals who have always tended to be those that work long hours and remain highly engaged in activities they value.

There has been a lot of interest in the notion of over-activity, in part because of the recent interest in “pacing”, but also because people who “over-do” exhibit some features inconsistent with the old avoidance model. For some reason people who over-do engage in activity that will increase their pain – and yet they continue doing so, despite the need to “recover” or do less on the days following their high activity days. Something is overriding the (expected or usual) sense of concern about experiencing pain at the time of their over-activity.

A study by Andrews, Strong and Meredith (in press) looks at activity patterns and particularly over-activity and avoidance patterns and has been able to validate the construct of “over-activity” as a pattern of activity that increases pain – but inconsistent findings relating to avoidance and over-activity. While pain is known to increase, the effect of this on future activity levels is not yet known.

What I wonder is whether these patterns relate to contextual aspects of activity carried out by people living lives. We all know that we push ourselves some days and chill out a little on others. We know that sometimes we’ll do things that will be either fatiguing or actually generate pain (like when you need to move house, dig the garden in spring, do a fun run, have a Christmas dinner at our place), and for most of us this is something we accommodate by being a little less busy for a couple of days afterwards. If we take actigraph recordings over a week or two (Jawbone anyone?), I’m sure it will also show a pattern of high activity and then lower activity, so that over time the activity levels probably flatten out around a mean level of activity. When we do something we value very much, the perceived sense of effort (fatigue) may be lower – we feel energised and enthused although we are tired. When we do something we don’t value (for me it has to be vacuuming!), it feels more tiring and time goes very slowly.

I wonder if people living with pain need additional time to “recover” because of both increased pain, and also the feeling of fatigue. And whether perhaps we need to also study what it is about the tasks being undertaken that is valued rather than simply the task activity level. Busyness may depend on the value of what is being done.


Andrews, N.E., Strong, J., & Meredith, P.J. Overactivity in chronic pain: Is it a valid construct? Pain.

Baliki, M.N., Geha, P.Y., Apkarian, A., & Chialvo, D.R. (2008). Beyond feeling: Chronic pain hurts the brain, disrupting the default-mode network dynamics. The Journal of Neuroscience, 28(6), 1398-1403. doi:

Wiech, K., Ploner, M., & Tracey, I. (2008). Neurocognitive aspects of pain perception. Trends in Cognitive Sciences, 12(8), 306-313. doi: doi:10.1016/j.tics.2008.05.005