Research

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


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

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

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

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

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

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

Nope.

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

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

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

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

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

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

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

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

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

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

One plus one may not always equal two


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Just a little scratch”


If you’ve had a blood test, flu jab or Covid-19 vax (please do, not just for you but for the vulnerable) you’ll probably have heard those words “Just a little scratch” then the needle goes in and ouch! I’ve wondered why phlebotomists and vaccinators use those words: is it to reduce the pain? give you some warning so you don’t pull away? why use the word “scratch” when it’s not a scratch?!

I suspect, though I haven’t read up on it, that the reason people say “just a little scratch” is to influence expectancies. Expectancies are defined as “cognitions regarding the probability of future experiences, events, and behaviour” (Peerdeman, van Laarhoven, Peters & Evers, 2016). In other words, what we expect to experience, happen or do influences what we actually experience, what happens, and what we do. Expectancies are really important when we consider placebo – and nocebo. Despite commentators who don’t consider placebo to be a thing (the response to being in a treatment ritual, over and above the effects of any active therapeutic agent), in pain, it is most definitely a thing, and one we need to be aware of as clinicians.

Back to expectancies.

Mostly, what we expect is what we experience. If we expect something to REALLY HURT then it’s likely to REALLY HURT! But what happens when we don’t expect something and it happens? Or when we expect something not to really hurt, but it actually does?

Peerdeman, Geers, Porta, Veldhuijzen and Kirsch (2021) investigated this mismatch between what we expect and what actually happens. It’s fascinating because the results weren’t quite in line with what the researchers thought…

What did they do?

The authors selected 82 healthy adults, aged between 18 and 30, with no health problems (physical or psychologist), no chronic pain, no current pain, no medications, no pacemakers, and no pregnancy. The participants weren’t allowed to use any medication, alcohol or other drugs in the 24 hours before the experiment.

Two experimenters undertook the experiments – one wasn’t aware of who was getting what, while the other was unaware of what was getting what until just before she gave the verbal suggestion. The experimenter who was blinded left the room before the second one gave the suggestion, in order to remain blinded throughout.

The participants were wired up to record heart rate, skin conductance, and then thermal and nociceptive perception thresholds were identified – at least in part to give participants a chance to get used to the heat stimulus. The experimenters went in to increase the heat to identify the temperature where participants indicated the pain was “moderately high” (who volunteers for these experiments? Oh – they recruited from around the university and on social media...). Then the experimenters got to work: participants were randomised to get either a suggestion of “no pain” (they’d already had three occasions where the thermal stimulus wasn’t painful, and three where it was), or a suggestion of moderately high pain. Then the stimulus was applied four times, with participants having to rate the expected pain intensity, how certain they were of this prediction, and how afraid they were. Afterwards, they were asked to rate pain intensity and unpleasantness.

For all the details of this experiment, head to the paper itself – it’s very detailed, and could be replicated.

Results

One person dropped out before the trial began – it was too painful – leaving 81 people remaining. The average age was 22 years, but the investigators don’t report gender.

When people were told “it’s not going to hurt” participants rated the pain lower than those who were told it was going to hurt, and while the ratings changed depending on what they experienced, when it was again suggested they’d feel no pain – again their pain ratings were lower than expected. Who knew pain intensity could vary so much? Reported pain intensity in the people who were told they wouldn’t experience pain was 4/10 points lower than the other group who were told it would hurt, and a bit over 2 points lower the second time (on a 0 – 10 numeric rating scale). That’s a thumping great amount of pain reduction! Add to this, these participants also were less afraid of their pain than the other group.

BUT, and this is important, participants in the “it’s not going to hurt” group reported less trust in the experimenter (who would have thought, huh?!). So beware: if you tell someone “oh this won’t hurt a bit” – they may experience less pain, but they’ll look at you sideways and be a bit wary of you because you violated their trust.

Discussion

I haven’t described the second experiment because of space, but go ahead and read it. Essentially they added some more participants, varied the procedure a little to reduce the memory burden on participants, and added a “medium” underprediction element into the process. The results showed similar outcomes – lower ratings of pain in both the “you won’t feel a thing” and the “it’ll hurt but not much” experiments, and yet again, less trust in the experimenter suggesting that it wouldn’t hurt.

Lessons to learn?

Think carefully about inflating how much pain relief someone will experience, especially if you’re going to see that person again. While people might experience less pain, losing someone’s trust in a therapeutic setting is a serious problem. The authors point out that healthy volunteers in a lab setting, getting short-term pain, is not like a therapeutic setting where it’s probable that trust is well-established. We don’t know what effect violating trust in a longer-term relationship might have.

At the same time – it does strike me as intriguing that simply being told “it won’t hurt” can influence pain intensity rating. What’s going on? How can a communication stimulus influence an experience? How could a psychological input change the way we perceive a noxious stimulus? Perhaps the way forward might be to use neutral language or, more positively, suggest that the person can handle it? “Just a little sting and you’ll get through”

Peerdeman, K. J., Geers, A. L., Della Porta, D., Veldhuijzen, D. S., & Kirsch, I. (2021, Jul 1). Underpredicting pain: an experimental investigation into the benefits and risks. Pain, 162(7), 2024-2035. https://doi.org/10.1097/j.pain.0000000000002199

Peerdeman KJ, van Laarhoven AI, Peters ML, Evers AW. An Integrative Review of the Influence of Expectancies on Pain. Front Psychol. 2016;7:1270. Published 2016 Aug 23. doi:10.3389/fpsyg.2016.01270

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


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

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

Let me give you a few to ponder:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cannabis questions… so many questions!


Recently I wrote a summary of my readings around cannabis for pain. It’s a hot topic in New Zealand because we’re holding a referendum on cannabis law reform next year, and as expected, all the lobby groups are out in force! My interest is sparked because so many of the people I work with as patients also use cannabis – and the evidence from RCTs is pretty poor. And YET as a recent study colleagues and I carried out with people who have spinal cord injury and neuropathic pain, cannabis is something that holds appeal, and interestingly, seems to provide some useful effects.

The study we conducted (see it here: https://rdcu.be/bTuup) was a qualitative investigation of people with spinal cord injury who used and found cannabis helpful.

We found that people mainly trialled “conventional” pain relief such as gabapentin, pregabalin, nortriptyline, amitriptyline, and a range of opioids before they started testing cannabis and derivatives. The side effects and poor effect on pain of these pharmaceuticals have been well-documented so I wasn’t at all surprised to hear our participants describe feeling “foggy”, “unable to think”, and limited effect on their pain. This is common because neuropathic pain is such an extraordinary problem – there’s no single mechanism involved, there’s a cascade of effects, many of them in the brain and that means drugs effective on on those mechanisms are also likely to have side effects on cognitive alertness.

Our participants (and remember that cannabis is currently illegal in New Zealand but widely available in the hidden green market) researched their options carefully. They tried various forms of cannabis, often erroneously believing that CBD-heavy forms are (a) easy to identify from phenotype and (b) have an effect on pain. This isn’t the case – it’s the THC-CBD combination that appears to have greatest effect, with the THC being the heavy lifter when it comes to pain reduction.

Not only did our participants try a range of cannabis plants, they also tried various ways to use the product. Vaping, smoking, oil capsules, canna-chocolate, canna-cookies, chopped up in a salad, rubbed on in an ointment – virtually every route possible!

Importantly, every one of our participants denied wanting to feel stoned or high. In fact, they said that was the opposite of their intention – after all, if they wanted altered consciousness they all had access to prescribed medications that could do the trick! No, our participants wanted to do what we all want: take part in their own lives on their own terms. They wanted to participate in family life, do the shopping, play with their kids, just to function.

So, did it work? Well here’s where things get analytically tricky. Yes, almost all participants said cannabis acted quickly, alleviated their pain and gave them good sleep. BUT they also said their pain was altered, changed – they could more easily distance themselves from their pain. So was reduced pain intensity the critical effect, or was it more about feeling differently towards the pain? One participant described being able to “get in the zone” to meditate more easily. And from my perspective, being able to sleep better may itself provide important benefits on pain reduction (Kukushin & Poluektov, 2019).

So my question is whether pain intensity is the right metric in studies examining cannabis for pain relief? RCTs show very small effect sizes of cannabis/THC+CBD on pain intensity, and the research quality is pretty dismal (Campbell, Stockings & Neilsen, 2019).

If cannabis doesn’t reduce pain terribly much, then why are people so passionate about having it as an option? And why do they say it helps? This, my friends, is the real question I think we need to be answering.

Our study showed that participants reported doing more. And isn’t the reason for prescribing analgesia precisely so that people have less pain – and can do more? Our study also hinted at something else important: people using cannabis chose when, where and how they used this drug. To me this is something rarely discussed in pharmaceutical research. CHOICE allows people to make their own decisions. Making a decision for oneself is an important concept in New Zealand – autonomy, self efficacy, self determination. For people from whom so many freedoms have been lost (independent mobility, self cares, cooking, financial independence) being able to choose how to use a drug that alters pain even just a little is an important point.

When digging more deeply into the experiences our participants had when taking cannabis, I was struck by some intriguing points. Most acknowledged that while pain changed, it didn’t disappear. The effect was rapid when the product was vaped, or smoked. Dose didn’t escalate. There was a ritual aspect to using it – the same routine every day. There weren’t high expectations that it would help initially, but they grew quickly once participants tried it. All of which leads me to wonder at the influence of the meaning response (especially when people favoured what they thought were CBD varieties, when CBD isn’t as effective on pain as it is on anxiety).

Some additional points: many of our participants had to navigate a green, underground market. One with which they were unfamiliar and often uncomfortable with. Supply was erratic and fraught with concern about things like traveling with cannabis and cannabinoid products, the fear of discovery, the need to encounter people who are working on the wrong side of the NZ law. Supplies may, or may not, be pure or contain what the consumer wants. Many of our participants had never tried cannabis before their spinal cord injury. Information, accurate information, especially from health professionals, was scarce – and yet many medical practitioners were giving at least tacit approval (in an information vacuum). Our participants said they didn’t rely on what they were told by health professionals: they’d rather believe the grower, the naturopath, their friends, the internet.

All of these things should give health professionals, and law-makers, some food for thought. An underground market means no regulation. No regulation means cannabis is off topic for health educators. Absence of quality information means risks as well as benefits are unavailable. Lack of trust emerges when those who are usually respected for their opinions cannot, or will not, provide clear direction. And our medical practitioners may have trained in the days when popular belief was that cannabis is a ‘gateway’ drug to harder, more dangerous ones. At the very least, the attitudes towards people who use cannabis recreationally has infused our society such that to call someone a “stoner” is equivalent to calling them a “loser”.

For what it’s worth, I do not currently support medical prescribing of cannabis the plant. I think doctors need to know the effects, side effects, interactions, indication, doses, and contraindications of a drug before they put their signature on the line. After all, their responsibility is “first do no harm”. Yes I know cannabis is thought to be a safe drug – but there are adverse effects, the active components do interact with other drugs, and when it’s unknown how much to take, or the best route for administration, then I think it’s unfair to place that burden on a medical practitioner. Does this mean I think cannabis should remain illegal? Not at all! The current legal situation is absolutely doing harm. Regulation, information and maybe allowing people to make their own informed decisions about cannabis might be a better option. After all, alcohol is an analgesic – but we don’t march down to our doctors asking for a prescription for gin and tonic, now do we? We don’t need to because alcohol with all its harms is legal.

Where do we go from here? I think there’s merit in at least two questions being explored. (1) What is the effect of cannabis on pain – not on intensity, but on the experience of pain? Does cannabis help people achieve a meditation state? Does cannabis help via reduced anxiety? Does cannabis help via improved sleep? and (2) How does cannabis use influence participation? Is it through being able to choose when, where, and how cannabis is used? Is it indirectly through reduced anxiety?

And of course, if much of the effect is via a meaning response, what does this tell us about how we can harness our own endogenous opioid and cannabinoid systems? Can we do it without needing to use agents like cannabis?

Campbell, G., Stockings, E., & Nielsen, S. (2019). Understanding the evidence for medical cannabis and cannabis-based medicines for the treatment of chronic non-cancer pain. European archives of psychiatry and clinical neuroscience, 269(1), 135-144.

Kukushkin, M. L., & Poluektov, M. G. (2019). Current Views on Chronic Pain and Its Relationship to the State of Sleep. Neuroscience and Behavioral Physiology, 49(1), 13-19. doi: 10.1007/s11055-018-0684-3

Self-management: What do we think about it?


Self-management is all about the person living with their chronic health problem, learning how to maximise their wellbeing and limit the impact of their health problem on their life. The words might be well-known – but how self-management is best carried out, by whom, and when is a vexed question.

I stumbled upon a study carried out by Van Wely, Boiten, Verhoef, Eijckelhof, Van Hooft, Van Staa et al (2019) where, using Q-methodology (more about this shortly), they examined the beliefs about self-management of a group of Dutch physiotherapists.

First of all, why is this something to blog about on a blog about pain? My basic reason is that the only time we as health professionals can directly influence what a person does is when they’re in front of us. That might be about 30 – 60 minutes, maybe once a week if we’re lucky. The rest of the time that person is on their own. How closely the person follows what we’ve discussed in clinic depends on a whole bunch of factors, some of which are values (how important is health compared with everything else in that person’s life?), readiness to take action (maybe just thinking about it hasn’t yet moved to planning or doing), support or not from others, how well we’ve explained things (how many of us learned about teaching as part of our training?), confidence (are they worried they’re doing it wrong?) and so on. We’re a little inclined to believe that because we value health over other parts of life, so too does the person. And we’re familiar with what to do – but what we ask people to do can be very foreign and unfamiliar.

Living with persistent pain is a 24/7 7 days a week job. It doesn’t go on holiday, doesn’t switch off because you’re tired, doesn’t shuffle into the background because you have other things to do. I’ve referred to it as the ongoing burden of micro-decisions made every single moment of the day.

This means that knowing what helps, and what doesn’t, being able to decide what to prioritise in this moment on this day in this place, being able to communicate plans and negotiate with others, being “selfish” enough to prioritise what helps with wellbeing over what might feel important in the moment but drains.

So, turning to the study by Van Wely and colleagues, what did they find out?

Q-methodology is an approach to help establish correlations between participants’ beliefs and values by ranking a series of statements, and gradually reducing the list to one by forcing decisions about which statements to omit. Often there is an interview accompanying a Q-methodology sort, and in this case it was used to help participants explain their choices. 37 statements about self-management were sorted by participants into (1) agree (2) disagree or (3) neutral. The “agree” statements were then rank ordered starting from the right “strongly agree”, then moving to the left “strongly disagree” and finally, the neutral statements were sorted. For more information on q-methodology, this site is gold!

Statistical analysis was carried out using a by-person centroid factor analysis with varimax rotation. This process was used to identify the number of data-driven factors, factors representing people who sort the statements in a similar way to one another (ie they share similar beliefs). The qualitative material was then coded to identify topics related to self-management support, and clustered into themes which the authors then labelled.

39 physiotherapists were involved in this study, approximately 50% women, aged between 22 – 64 with an average age of 41 years. Most participants held a Bachelor degree, and the majority worked either in priamry care or nursing home settings.

Results – and what do they mean?

Three dimensions explained how the therapists ranked the statements – the physio’s role perception, the physio’s drive, and collaboration with the patient. The authors therefore coded the four perspectives (from the factor analysis) as (1) externally driven educator (2) internally driven educator (3) client centred coach and (4) client initiated coach.

(1) Externally driven educators thought self-management “ought” to be done to cut down health-care costs, or to reduce the need for clinical input. They thought of themselves as motivators and experts, and didn’t allow much autonomy for the person. Adhering to what is “prescribed” was important – while life goals were considered important, these physio’s thought treatment goals were more important.

(2) Internally driven educators thought self-management is best encouraged by identifying intrinsic motivation in the person, and support self-management by education within consultations. Unlike externally driven educators, they weren’t as motivated by healthcare system issues, and thought that self-management should be supported as an integral part of every session. These participants recognised the person’s autonomy and own expertise to find solutions, and also identified the need for them to obtain additional training to be able to provide support in this way.

(3) Client-centred coaches were influenced by their own internal drive for self-management support and focused on the person’s freedom to choose. Goals of reducing professional care and cost weren’t considered part of the equation, and they aimed to collaborate in a partnership with the people they were seeing. They believed in shared-goal setting, and thought they should be available when needed, but encouraged people to find solutions for their own problems. They particularly thought that healthcare reorganisation was needed to support this approach to healthcare.

(4) Client-initiated coaches also had an internal drive to support self-management but believed the person should ‘take the initiative’ to ask for help, and essentially passed the responsibility for maintaining self-management over to the person, rather than integrating either the environment or physiotherapy input. This group of participants thought distance technology would be useful to support people at a distance.

Overall, the physios in this study thought self-management was not a new concept, nor as something that was difficult or time-consuming. They recognised that self-management promotes the person’s freedom to choose – and that treatment should address the person’s needs so they could self-manage.

The authors were pleased that participants in this study thought of self-management as “business as usual”.

I thought it was interesting that the “educator” perspective was a strong theme. This tends to elevate the clinician above the person seeking help – although these participants did aim for shared decision-making mainly via providing education. I also thought it interesting that factors such as the need for healthcare reform and financial impact of self-management (to reduce cost) were important and I wonder what this study would look like in New Zealand where private practice physiotherapy, dependent as it is on (usually) ACC funding, might be less inclined to support an autonomous self-managing patient.

I think self-management is something all people with persistent pain engage in, whether it’s supported by clinicians or not. We don’t spend all our time “in therapy” which means the rest of our time is all about those decisions. Supporting people to be able to make thoughtful choices about what and how and when to do things that help promote well-being is, I think, something health professionals must do as equal partners. And I think it needs to be made explicit and part of every consultation. That means learning how to work alongside people, listen carefully to their priorities and values, help them develop skills to problem solve and find their own solutions – but most importantly, to have the confidence that people living with pain can make choices themselves.

Van Wely, L., Boiten, J. C., Verhoef, J., Eijckelhof, B. H. W., Van Hooft, S. M., Van Staa, A., & Roelofs, P. D. D. M. (2019). Perspectives of Dutch Physiotherapists on Self-Management Support: A Q-Methodology Study. Physiotherapy Theory and Practice, 35(4), 318-326. doi:10.1080/09593985.2018.1443182

Pacing, pacing, pacing…


If there’s one pain management and rehabilitation strategy that keeps me awake at night, it’s pacing. Living with persistent pain, I loathe the idea of pacing because I know everyone “booms and busts” from time to time, and few people like the idea of planning every single aspect of every single day as they come to grips with modifying their daily routines. BUT it’s one of the most popular strategies in textbooks, self-help books, and in treatment so there must be something in it, right?

Vexed definitions

One of the problems with the whole pacing concept is defining what we mean by it. I like Nicole Andrew’s approach: Nicole acknowledges that defining pacing is difficult, so when she talks about her research into pacing, she’s clear about the definition she’s using in that piece of work.

Various definitions abound. As a broad concept, pacing refers to organising daily activities in such a way that a specific end is achieved. The difficulty arises when we begin to determine the end goal of pacing (pain reduction? maintaining consistent activity levels? completing important tasks? avoiding a flare-up? reducing the relationship between pain fluctuations and activity? increasing overall activity levels over time?) and the means used to achieve these ends (time as a guide? activity intensity as a guide? importance and values as a guide? “spoons” of energy as a guide?). You can see how complex this concept is…

Nielson, Jensen, Karsdorp & Vlaeyen (2013) discussed this and identified two treatment goals (they weren’t considering the spontaneous use of pacing, nor the use of pacing outside a treatment context). “Whereas the operant approach seeks to improve function (decrease disability), the energy conservation approach is designed to reduce symptoms (pain, fatigue).”

Fordyce developed the operant conditioning approach, viewing pain behaviours as reinforced by other people – or by avoiding negative consequences such as a pain flare-up. His approach involved establishing a quota – a certain number, or a certain time in which people maintain activity irrespective of pain flucuations. In a clinical setting, this is the approach I mainly use, though there is an art to setting the “minimum” a person does (setting a baseline) and to nudging the activity levels up.

Sternbach, another influential pain management person from around the late 1970’s, followed a similar approach – but instead of simply establishing a baseline, he advised people to anticipate the point at which they would increase their pain and to stop the activity just before then. This is also a popular approach in pain management rehabilitation today – but has the unfortunate effect of reinforcing a pain avoidance (and pain contingent) approach, if not done very carefully.

Occupational therapists have frequently advocated the “5 p’s”. Pacing, positioning, posture, persistence and problem-solving. This approach was based on energy conservation, and while I can’t find the original papers from which this approach was developed, it was introduced to me as part of rheumatology practice, and in conditions where fatigue is a problem such as multiple sclerosis. I can see it being used today as part of the popular “spoons” meme where people are thought to have a fixed number of “spoons” of energy, and need to allocate their energy accordingly. My main criticism of this approach is that it doesn’t allow for people to increase their capabilities over time, either through “training” effects, or habituation.

Now, how about some evidence for any of these approaches?

Well therein lies a problem – there is very little research to support activity pacing despite its popularity. This is why I was so interested when I spotted a pilot study published in Journal of Pain, testing the energy conservation approach to activity managing (aka pacing) against an operant conditioning approach in a group of people with fibromyalgia. This group of people provides us with a useful population to test both approaches because fatigue is thought to be a prominent feature of fibromyalgia, and energy conservation has some degree of face validity for managing fatigue.

The design of the study involved four groups, two immediately treated using either an operant conditioning variant of pacing, or the energy conservation variant, and two groups with delayed treatments, again with the two versions (these groups acted as the control groups for this study). 178 participants were involved, with confirmed diagnoses of fibromyalgia given by occupational therapists using the American College of Rheumatology’s 2010 FMS diagnostic criteria. If the occupational therapist had doubts about the individual’s diagnosis, or the person wasn’t able to provide formal documentation confirming the diagnosis, the study rheumatologist assessed the potential participant for inclusion. This is an important procedure in studies of people living with fibromyalgia, given there is no definitive diagnostic test such as a blood test or imaging result.

The two treatment approaches were documented in treatment manuals to establish consistency, and it’s interesting to note that the approaches were applied across all activities in a day rather than just exercise, as often happens. For full descriptions of each of the ten treatment sessions, the article should be referred to, and the treatment manuals are available at http://research.melanieracine.com/activity management

Cutting to the chase, what did they find?

Well… to quote the authors “Inconsistent with the study’s primary hypothesis, neither treatment was effective in reducing average pain or usual fatigue symptoms. However, analyses of secondary outcome measures suggest the possibility that OL-based activity pacing treatments might be more effective than EC-based treatments in improving patient function.”

I didn’t expect pain reduction, or fatigue to be altered by an activity management approach: the relationship between movement and pain is highly variable, and there are many times we’ll be happy doing something and not experience pain simply because it’s something we enjoy. At the same time, I did hope to see a difference between the two approaches in terms of overall “doing” (function). My expectation was that pain may actually increase as people begin doing more, or alternatively, that people will feel more confident that they can achieve what’s important to them in a day, and that pain intensity becomes less of a guiding factor. The authors provide some explanations: perhaps the study numbers were too low to detect a difference (ie the study was under-powered); and perhaps a brief intervention isn’t intensive enough to help change over so many different aspects of a person’s life. Or perhaps, I want to add, neither approach is terribly great and while they both have intuitive appeal, persistent pain is too complex for any single activity management approach to make much of a difference. Maybe it’s something that needs other strategies to be incorporated such as exercise, mindfulness, medications, and even scheduling pleasant events.

So where does this leave us?

I guess for me, I like to think of activity pacing as one of many different tools in my toolbox. I bring it out when I’m attempting to increase my overall activity level – such as my walking programme, where I’m slowly but gradually increasing my capabilities without giving myself a whole two weeks of DOMs! I otherwise use a more flexible activity management approach: if something is important to me, and I think I can deal with the flare-up, I’ll do it. If it’s not as important to me, or I don’t think I can deal with the flare-up, I’ll probably modify my approach. Pacing, or activity management is only one tool…

Andrews, N. E., Strong, J., & Meredith, P. J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Nielson, W. R., Jensen, M. P., Karsdorp, P. A., & Vlaeyen, J. W. S. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

Racine, M., Jensen, M. P., Harth, M., Morley-Forster, P., & Nielson, W. R. (2019). Operant Learning Versus Energy Conservation Activity Pacing Treatments in a Sample of Patients With Fibromyalgia Syndrome: A Pilot Randomized Controlled Trial. Journal of Pain, 20(4), 420–439. https://doi.org/10.1016/j.jpain.2018.09.013

On the problem of coping


Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

Pain science is not a thing


Today’s post is occasioned by reading several discussions on various forums where the term “pain science” and various adjectives to describe this kind of practice. For those who don’t want to read the rest of my ramblings: no, it’s not a thing, science is an approach to understanding phenomena, and I would have thought all health professionals would use a science-based approach to treatment.

I went on to Google, as you do, to find out when this term began its rise in popularity. Google wasn’t particularly helpful but did show that it’s been around since 2004 at least, and seems to have been centred around the US, UK and Australia in roughly May 2004. I can’t grab data from earlier than this, sadly, but I think it’s interesting to take a look at the popularity peaks and troughs…

So, what does “pain science” mean to commentators? I haven’t delved in too deeply to the social media use of the term, but given I’m a social animal and have written my blog since 2007 (which is mainly on “pain science”) I’ve encountered it many times. It seems to be related to using a neurobiological explanation for pain as an experience (referring to the phenomenon and the underlying biological processes involved) rather than focusing purely on biomechanics or tissue damage/nociception as the key force. And it does seem to tie in with the emergence of “Explain pain” as one way of helping people reconceptualise their experience as something they can influence rather than something other people need to “fix”.

Commentators who aren’t in love with the “explain pain” thing have said things like “the pain science camp” or as one person put it “There’s your manual PTs, your pain science PTs, and your just load it PTs etc”

I went on to Twitter and the hashtag #painscience was paired with #BPSModel and #PT and #physicaltherapy (or variations), #chronicpain #exercise #lowbackpain – and so on.

So what do I think pain science means if it’s not a neurobiological approach to pain management? Well – pain science is a lot like cardio-respiratory science, and neurological science, and psychological science – it’s about applying a scientific approach to understanding pain. Science has been defined as “the intellectual and practical activity encompassing the systematic study of the structure and behaviour of the physical and natural world through observation and experiment.” In this instance, Google is your friend. So science is about systematically studying phenomena through observation and experimenting. If we apply this to pain – it’s the systematic study of structure and behaviour of the phenomenon we call ‘pain’ through observation and experiment. For what it’s worth, scientific study of pain has been going on since… oh at least Descartes, but probably much earlier given that pain is a ubiquitous and essential part of human experience.

To me, understanding pain involves multiple disciplines: yes to biology, and especially neurobiology because the experience (as we understand it now) involves neurobiological processing. But it’s also about psychology
the scientific study of the human mind and its functions, especially those affecting behaviour in a given context; sociology – the study of the development, structure, and functioning of human society; the humanities – the study of how people process and document the human experience; politics – the activities associated with the governance of a country or area, especially the debate between parties having power; and Anthropology –  the study of humans and human behavior and societies in the past and present. Social anthropology and cultural anthropology study the norms and values of societies. Linguistic anthropology studies how language affects social life.

So to describe an entire approach to understanding a phenomenon as if it’s a “movement” or “camp” or “dogma” or even “tribe” suggests serious  misunderstanding of both science and of an intervention.

What is “explain pain” then, or pain neurobiology education? – it’s an explanation of some of the biological elements of our nociceptive system as they combine to produce the experience we know as pain. For some people it’s the first time anyone took the trouble to explain why the pain of a papercut feels so bad compared with, for example, the pain of a sprained ankle; and why they still experience pain despite having no “damage” as visible on imaging. It’s an attempt to give people a frame of reference from which to understand their own journey towards recovering from a painful injury/disease/problem. In itself it’s not new: explanations for pain have been used in pain management programmes since the 1970’s (and earlier, if we consider that Fordyce used explanations in his behavioural approaches to pain management), and have routinely drawn on current pain research to help provide explanations that make sense to both the person and the clinician. The distinction between earlier explanations which drew heavily on the gate control theory, and this latest iteration is that the explanations are more complex, pain is considered to be an “output” that emerges from multiple interactions between brain and body, and that’s about it. Oh and it’s been picked up and enthusiastically used by physiotherapists (and other primarily body therapists) around the world.

What’s the evidence for this approach? Well, IMHO it’s not intended to be a stand-alone “treatment” for most people experiencing pain. I see giving an explanation as integral to usual practice, just as we do when we explain why it’s not a good idea to go running on a newly sprained ankle or why we’re suggesting a mindfulness to someone with a panic disorder. So far there have been a lot of studies examining variants of “explaining pain” alone or in combination with a number of other treatments including exercise. A recent systematic review and meta-analsyis of “pain neuroscience education” for chronic low back pain found eight papers (with 615 participants) showing that in the short-term, this kind of education reduces disability (by 2.28 points on the Roland-Morris Disability Questionnaire which is a 24 point scale) in the short-term and a slightly lesser effect in the long-term  (2.18). There were greater effects when this was combined with physiotherapy, though we often don’t know exactly what is included in “physiotherapy”.  There was some evidence that this kind of education helps reduce pain scores (by 1.32) but only in combination with other physiotherapy interventions. The authors pointed out that the strength of evidence for education on pain in the short term was low to moderate, but that it doesn’t have much of an impact on pain-related fear and avoidance, or on pain catastrophising (Wood & Hendrick, in press).

To compare this with another active treatment, exposure therapy for fear of movement/reinjury in chronic low back pain, de Jong, Vlaeyen, Onghena, Goossens, Geilen & Mulder (2005) performed a careful study of six individuals, using a single case experimental design. (If you’re not familiar with this approach to research – it’s extremely rigorous and useful in a clinical setting, this link takes you to a chapter discussing its use).  The aim was to establish which part of treatment “did the work” to change behaviour, but also measured pain intensity, and fear of pain and movement.  The treatments were information about pain and mechanisms, and the activities were those the person particularly wanted to be able to do. Their findings identified that explanations do little to pain intensity, avoidance or fear – but what actually worked was doing graded exposure. In other words, experiencing something different, DOING that something different in the real world, was more effective than talking about why someone shouldn’t be afraid. A much more recent replication of this study was conducted by Schemer, Vlaeyen, Doerr, Skoluda, Nater, Rief & Glombiewski (2018) and shows the same result: doing trumps talking about doing.

When we sit down and take a cold hard look at what we do in pain management we can see that the field has to draw on a huge range of disciplines and fields of study to understand the problems people experiencing pain have. This is, in fact, why Bonica and colleagues first established the International Association for the Study of Pain, and why multidisciplinary (and now interprofessional) pain management teams and approaches were established. None of us can possibly hold all the knowledge needed to work effectively in the area. At the same time, as health professionals working with people, we do need to have some foundation knowledge about biology, disease, illness, psychology, sociology and anthropology. These areas of study inform us as we work hard to help people get their heads around their pain. Do we need to be experts in all of these fields? Yes – if you work completely in isolation. No – if you work within an extended team (whether co-located or otherwise). Pain research will continue to push our understanding ahead – and to be responsible health professionals, we must incorporate new understandings into our practice or we risk being unprofessional and irrelevant. I would go as far as to say we’re irresponsible and harming patients if we fail to incorporate what is known about pain as a multidimensional experience. It’s time to back away from temporary guruism and move towards a far more nuanced, and perhaps less flighty approach to understanding pain.

Pain science. No, it’s not a thing. Pain being examined through multiple scientific lenses: definitely a thing.

NB for the avoidance of doubt: pain is never a “thing” but examining pain through multiple scientific lenses involves many “things”. (Merriam-Webster – click)


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

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

Wood, L., & Hendrick, P. A. A systematic review and meta-analysis of pain neuroscience education for chronic low back pain: Short-and long-term outcomes of pain and disability. European Journal of Pain, 0(0). doi:doi:10.1002/ejp.1314


Wandering back from the IASP World Congress


Meetings, meanderings, mind-expansions

I’ve been away for abut 10 days, attending the World Congress of the International Association for the Study of Pain. It was a time of meetings with wonderful people I’ve met via the interwebs, with researchers and clinicians, and most importantly, with people living with pain.

It was also a time for meanderings – around the very walkable city of Boston, embracing history and looking towards the future, and mind meanderings as well.

And because it was a conference, it was also mind-expanding. New ideas, new ways of investigating this human experience of pain, new discoveries, and new applications.

… and expanding the way we help people who live with pain.

What struck me between the eyeballs?

Good things: for the first time, people living with pain were included in the proceedings. I’m reminded of the old saying from the disabilities movement “Nothing about us without us” – well, it’s finally arrived at the World Congress! There are some concerns about this move amongst clinicians, and there’s no doubt that some of the people I’ve seen for whom the experience of being seen about their pain has been disheartening, stigmatising and frustrating, are very angry. I think, though, that continuing to avoid meeting with people who are in this space serves only to fuel their rage, and perhaps it’s time for us as clinicians to learn what it is about their experiences that we can learn from.

Professor Fiona Blyth talking about the Global Burden of Disability – 21%

Another “between the eyeballs” moment was when Professor Fiona Blyth discussed the knowledge that 21% of the total global burden of disability, and that this is increasing more quickly in developing countries because of the rapidly increasing percentage of older people (with multiple MSK comorbidities) – but here’s the kicker: There has been little-to-no change in funding policies to reflect this increasing burden of disease. You read that right. Funding goes to diseases that can kill you – but very little goes to the diseases that simply leave you disabled for the rest of your days.

Not so good things: Well, much of the research shows that change is incremental and that while strategies like exercise have reasonably good research support what actually matters is that exercise gets done: the form of exercise for persistent pain is a whole lot less more important than issues of adherence (Professor Kathleen Sluka’s plenary lecture showed this).

There was a good focus on behavioural science and pain, disability and response to treatment. And plenty of emphasis on sharing the responsibility for using psychologically-informed treatments with all health professionals, not just psychologists.

Why have I included this in my “not so good things”? Because a very recent Twitter discussion suggests that there continues to be a misperception that by using a psychologically-informed treatment, the aetiology of a pain problem is therefore assumed to be psychological.

There continues to be tussling over whether a biopsychosocial (or sociopsychobiological) model has sufficient emphasis on “the bio”, along with misinterpreting the historic origins of Engel’s thinking. Various people argue that “all is bio” or “but it’s reductionist” – yet readers of Engel’s original writings will recognise an interactional systems approach, where an effect in one factor will likely have flow-on effects everywhere else.

The final “not so good” for me was the dearth of discussion about occupational therapy’s historic and ongoing involvement in pain and pain management. There were at least 20 occupational therapists at the meeting, and despite Fordyce including occupational therapists in his original behavioural approach to disability (Fordyce, Fowler & Delateur, 1968), scant evidence of occupational therapy’s important contribution to this field over the years.

This is important because occupational therapy is one of the few professions to have adopted, retained and integrated a sociopsychobiological approach to healthcare. If you’re ever thinking about asking “how does one profession use the BPS model?” maybe talking with an occupational therapist will help you.

I was lucky to have a chance to offer a piece of research conducted by Brian Rutledge and me, looking at the function of an online discussion group (yes! Facebook!). The purpose was to establish whether the group Exploring Pain Science functions as a “Community of Practice“. The answer is a resounding Yes! and you can review the poster here – click

There will be a paper forthcoming, and some further analysis of the processes used in this group.

…Why look at Facebook groups?

Well, one reason is that there was a resounding call for knowledge translation – and all manner of ways thought to be useful in this pursuit. But as far as I am aware, using Facebook groups (especially ones that have emerged “organically”) is both a popular strategy – and one that has been under-examined in pain research – for people trying to implement what they’ve read or heard from research into their daily practice.

Hope this very brief tour through just a couple of the things I’ve been pondering since this World Congress will encourage YOU and others to join IASP. It truly represents the only global organisation that is transprofessional, wedded to a biopsychosocial model of pain, and one that is progressing our understanding of pain so much.


Fordyce, W. E., Fowler, R. S., & Delateur, B. (1968). An Application of Behavior Modification Technique to a Problem of Chronic Pain. Behaviour Research and Therapy, 6(1), 105-107.