What happens to pain over 21 years?


No! I was not born then… I’m much older than that. No, in this longitudinal cohort study, participants recruited from the general public in Sweden were surveyed five times: at inception in 1995, again in 1998, 2003, 2007 and 2016. The article I’m reporting on included all respondents who had completed information on at least 3 of the 5 time points, a total of 1858 people! That’s a decent-sized study.

Longitudinal studies are really hard to do but offer us so much information about what happens over time to a group of people and it’s something we need to do more often. The problems with longitudinal studies are that people drop out, get lost to the researchers, they cost a lot to run, and research changes over time so the research questions may change, the measurement instruments may change, and it’s difficult to predict the variables that might be relevant at the beginning of the study. So, hats off to Aili, Campbell, Michaleff, Strauss, Jordan, Bremander et al (2021) who carried out this study!

Like many of these longitudinal studies, the authors developed an analysis in which groups of people who share similar characteristics in their persistent pain were identified. By following these groups over time, researchers are able to identify who changes, who doesn’t, and to identify some of the predictive factors that might put a person in the “at risk” group for developing increasingly poor outcomes. The “so what” factor for this type of study is that by identifying “at risk” people early on in their trajectory with pain, it may be possible to develop interventions that could help reduce this risk and that has to be both a human and economic gain for a community. In this instance, in order to interpret the findings, it’s important to remember that Sweden and other countries in the world don’t all look alike, have different healthcare systems, different genetic factors, and different social structures that can influence the process. So bear that in mind as I proceed.

The question asked about pain was this: “have you experienced pain lasting more than 3 months during the last 12 months?” Participants were then asked to indicate the location of the pain using a manikin with 18 predefined bodily regions in the musculoskeletal system; head and abdomen were not included (that latter one is a bit of a problem for me, tbh – given abdominal pain is a common experience for many women…). Participants were then identified as either having no chronic pain, or chronic widespread pain or chronic regional pain.

Sleep, health status, socio-economic status, treatment-seeking (for pain), lifestyle factors (alcohol, tobacco use), immigrant status and social support were also analysed.

Now for the statistics! Latent class growth analysis was used to identify common patterns or trajectories of pain over the time of the study. This analysis clusters participants according to their pain status over time, with each cluster representing a certain pattern of pain over time – participants were placed in a group where they had the highest probability of belonging based on their individual pattern of pain over time.

Results

At the beginning of the study, nearly 13% of participants reported chronic widespread pain, with just over a quarter (25.3%) reporting chronic regional pain. Using the analysis and various confirmatory statistical processes, the authors identified a 4-cluster model, and a 5-cluster model. Both models included a group that had NO ongoing pain at all, as well as a group with ongoing widespread pain. The preferred model was the 4-cluster model, as this had four different but clinically meaningful patterns – persistent no pain; persistent chronic widespread pain; those moving from chronic regional pain to chronic widespread pain, and a change trajectory: eg no chronic pain to chronic regional pain or chronic widespread pain. The cluster identified as including those who typically migrated from NCP to CRP or CWP was the smallest (5% of the sample), and the least reliably detected.

The trajectories are really interesting: (1) 47% of people never reported persistent pain at all over the 21 years. 5% pf people reporting no pain initially, but then moved to chronic regional pain or chronic widespread pain over time. (2) 22% of people reported chronic pain initially, or moved from chronic pain to no pain over time – the authors argue that the cluster of people may have chronic regional pain initially and migrate between chronic regional pain and no pain over time. (3) 10% of the group moved from chronic regional pain to chronic widespread pain and this grew more likely over time. (4) The final group were a small group (6%) of people who continued to report chronic widespread pain over the whole 21 years

The predictors for those in group (3) were being female, seeking care for pain over the preceding 12 months, lack of social support, poor physical function, poor vitality, and poor mental health. Being a manual worker nearly made the cut, and in an age-adjusted analysis, did for the group moving to widespread pain. Age (middle-age!), poor sleep, smoking and being an immigrant also tended towards having a poorer prognosis.

What on earth does this mean?

Well, one exciting thing is that a large group of people never experience persistent pain. This might imply that these people are generally more healthy, and it can also help explain why some people living with pain feel so alienated from the rest of their community. If most people around you don’t develop pain, then they most likely don’t understand what it might be like to live with pain 24/7.

When we look at the factors that predicted moving from no pain to chronic pain, there were several factors that can be modified to reduce the risk: sleep problems, poor physical and mental health, poor vitality, seeking treatment, and limited social support. Perhaps by addressing these factors, some people might find their move towards greater pain could be reversed, or at least halted. My question is, however, whether treatment seeking might reflect the fact the person wasn’t feel great either physically or mentally, and for some people, being unwell might mean withdrawing from social interaction, so it’s not entirely simple to interpret.

The authors point out that “The highest risk of belonging to the group developing CRP or CWP is seen in age groups below 50 years. Previously published figures from baseline data in this study show a prevalence of over 20% of chronic pain already among 20 to 29 year olds. The overall image is that long-term patterns of pain are already becoming established by the time adulthood is reached, and rising age in adulthood increases the likelihood of stable patterns over time.” [italics mine] They also point out that women who develop pain have a greater risk for developing long-term and increasingly widespread pain. Other important factors for this group were those who were older, had poor sleep, worked in a manual job, drank less alcohol, were immigrants, had less education, generally poor health, more care seeking and low social support.

To me, this study shows the impact of living on the fringes of our society – the women (in particular) who work manual jobs like cleaning, who left school early, perhaps moved to a new country and have few friends, and were probably quite stressed – leading to poor sleep, and poorer health, with consequent treatment seeking. What are we doing to help these women? Here in New Zealand, we can probably add Māori, Pasifika, refugees, and people who don’t speak English terribly well. How well are our current pain management services working for these people?

Aili, K., Campbell, P., Michaleff, Z. A., Strauss, V. Y., Jordan, K. P., Bremander, A., Croft, P., & Bergman, S. (2021, May 1). Long-term trajectories of chronic musculoskeletal pain: a 21-year prospective cohort latent class analysis. Pain, 162(5), 1511-1520. https://doi.org/10.1097/j.pain.0000000000002137

Family and friends matter


I’m going back to my series on behavioural approaches to pain management (it’s a slow process!). For the first two go here and here. Now I want to talk about the impact of family and friends on people living with pain.

The people we live with are so influential on what we do and believe about pain. It’s our parents who first taught us the relationship between the word “pain” and the experience we know as pain. It’s our parents and family who responded when we cried, who kissed it better (or not), who told us to “harden up” (or not), who took us to the doctor (or not), who showed us, through their own behaviour, how to “do pain.”

There’s a good deal of research investigating the impact of friends and family on pain behaviour (remember the distinction I make between pain-the-experience and pain behaviour or what we do when we’re sore? click). For instance, a systematic review by Snippen, de Vries, van der Burg-Vermeulen, Hagedoorn and Brouwer (2019) looked at people with chronic diseases, and the attitudes and beliefs of significant others. They found that “positive and encouraging attitudes regarding work participation, encouragement and motivating behaviour and open communication with patients” were facilitators for work participation while “positive attitudes towards sickness absence and advise, encouragement or pressure to refrain from work” were barriers to returning to work.

In another study, Burns, Post, Smith, Porter and colleagues (2019) observed spouse dyads behaviour after arguing then the person with pain undergoing a pain induction task. Spouses that believed that the patient’s pain was a mystery were significantly more likely to be perceived by the patient as giving critical/invalidating responses toward the patient during the discussion; while spouse perceptions that the patient’s pain was a mystery were related to internal and negative attributions spouses made while observing patients display pain behaviors during the structured pain behavior task (p. 1176).

In another study, this one a daily diary study with people living with osteoarthritis in their knee, found that on days when the person with pain reported more thinking the worst, their spouses were more unhappy during the day. And on the days when the partner was more irritated with the person living with pain, that person reported more thinking the worst the next morning. The link? The people with pain who were thinking the worst were also more grumpy through the day, and this was rubbing off on their partner. (Martier, Zhaoyang, Marini, Nah & Darnell, 2019).

Makes sense, doesn’t it? That when we see our loved one demonstrate that they’re sore, and they’re grumpy – and if we’re not sure they’re for real – we might be less supportive as partners than if we think their pain is for real. And over time the pattern of being sympathetic might wear thin – in fact, Chris Main (psychologist) describes a pattern of initial solicitous behaviour (the “there, there dear, I’ll fetch you a cup of tea”), then resentment (“surely you’ve recovered now?”), then anger and punitive behaviour (ignoring the person, getting irritated with them), but then feeling guilty about this (“OMG I know, it’s not your fault and I’ve been so mean”), returning to being solicitous – until the next time the partner feels fed up.

What does this mean for a behavioural approach?

Well, it’s not surprising that if one of the partners thinks the other “should be well now”, they’re likely to be unsympathetic as we begin changing the person’s behaviour. Often we’re attempting to help someone be consistent with their daily activities, and this can often begin by reducing how much should be attempted so the person can “do no more on a good day, and do no less on a bad day.”

And if the partner is really worried about the person with pain, and afraid that doing more is going to increase pain and prolong disability, it’s also not surprising that the partner is likely to be worried about us asking the person to do things differently (especially exercise!).

And don’t forget that during this time, both partners are probably trying to keep some semblance of normal going. They still have the usual household tasks to get done, to pay the bills, to get the kids to and from school, to keep in touch with extended family and friends and so on.

It’s stressful. And we add to the burden when we ask the person to do something different, whether this be doing exercises, using a mindfulness or relaxation technique, perhaps go to various appointments all around town…and if we don’t include the impact of what we expect on the partner, we’re possibly not going to have “the team” on board with the rehabilitation programme.

The very best option is to ask the person’s partner to come in to at least one of our treatment sessions, so we can spend some time talking about what we’re asking the person with pain to do, and getting an indication from the partner about their willingness to follow the programme. The next best option is to write the programme down, and include “things family can do to help” – listing the kinds of things family and friends can do (and what they should avoid doing).

You see, people we see for help never live in a vacuum. They always have a context of friends, family, home, responsibilities, expectations from them, expectations for the work we do. Forgetting about this and expecting a good result fails to recognise the embedded nature of life. Contextual factors are important, no person is an island.

Burns, J. W., Post, K. M., Smith, D. A., Porter, L. S., Buvanendran, A., Fras, A. M., & Keefe, F. J. (2019). Spouse and patient beliefs and perceptions about chronic pain: effects on couple interactions and patient pain behavior. The Journal of Pain, 20(10), 1176-1186.

Martire, L. M., Zhaoyang, R., Marini, C. M., Nah, S., & Darnall, B. D. (2019). Daily and bidirectional linkages between pain catastrophizing and spouse responses. Pain, 160(12), 2841.

Snippen, N. C., de Vries, H. J., van der Burg-Vermeulen, S. J., Hagedoorn, M., & Brouwer, S. (2019). Influence of significant others on work participation of individuals with chronic diseases: a systematic review. BMJ Open, 9(1), e021742. doi: 10.1136/bmjopen-2018-021742

Self-care


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Modifying pain behaviour (2)


Two concepts that receive limited attention in the allied health literature are nomothetic and idiographic approaches. I’m discussing these concepts here because when we’re considering pain behaviour, I think we can focus much more on “generic” (nomothetic) concepts than we do idiographic ones – and yet we say we’re about the unique person in front of us.

Firstly, this site offers a good summary of the difference between nomothetic and idiographic – click

Essentially, nomothetic approaches focus on underlying generalities, perhaps traits, and are a solid part of the science of measurement in psychology. Given that much of our allied health measurement practice is based on psychological theories (such as using aggregated or grouped data to search for differences in means between two groups), it’s not surprising that we’ve tended to reach for a self-report measure when we want to understand what a person thinks and does when they’re sore. Think of the Oxford Knee Score, or the Oswestry Disability Index, for examples!

Here’s an item from the Oswestry Disability Index (Fairbank, Couper, Davies et al, 1980)

Section 5 – Sitting
I can sit in any chair as long as I like.
I can sit in my favorite chair as long as I like.
Pain prevents me from sitting for more than 1 hour.
Pain prevents me from sitting for more than ½ hour.
Pain prevents me from sitting for more than 10
minutes.
Pain prevents me from sitting at all.

When a person reads these items, they’re asked to indicate the answer that best fits their experience, but left unanswered are these points: what time of day? what kind of chair? what is the person doing in the chair? who is around that person? why is the person sitting for a long time? what is it about the pain that stops the person from sitting? what do they think is going on?

While the measure itself is based on rigorous methodology, has excellent psychometric properties and so on – it doesn’t investigate important dimensions that we need as clinicians to help this person perhaps alter their sitting tolerance.

Alternative measurement approaches are available: item response theory is one (click) and multi-level modelling is another (click) – but the former still considers latent traits (ie can we identify a general underlying response that underlies all the variability we see in the data), and multi-level modelling also assumes that the respondents still belong to a general population who will demonstrate similarities around the variable in question.

The problem is that people don’t always follow the rules. Here’s an example:

A woman I saw once had low back pain, and was very afraid to bend forward. She was particularly worried about bending down in the shower to wash her lower legs, and when she saw me she avoided putting her handbag on the floor because this would mean she’d need to bend down to pick it up.

To get around this concern, she’d learned to sit on the floor of her shower to wash her lower legs, used pull-on shoes with elastic laces, or court shoes for work, and she’d put socks and pantihose on while sitting on the floor.

At the same time, she was comfortable sitting for around an hour, was able to stand as a customer service person for an eight hour day, and was happy driving – but not happy about reaching into the back of her car (it was a two-door) because it meant she was bending.

For this woman, her score on the Oswestry was below 20% or considered to be “minimal disability” – and yet she was almost turning herself inside out to be able to do what mattered to her.

An idiographic approach to her situations looks a little more deeply at the function of behaviour in context. If we take a look at the amount of spine flexion within her activities of daily living, we can see that sitting on the floor to wash her legs, and to pull shoes and socks on involves just as much movement as if she was bending down. What was different? Well, she was really afraid she’d slip in the shower and land in an undignified heap on the floor, needing to be rescued – while being naked! She said she’d been told that she shouldn’t bend because she had a disc prolapse and she’d seen one of those spine models with the bright red disc bulge and thought this was going to be much worse if she bent over. She was very concerned about appearances as she worked in a customer service role, so developing a way to still get dressed while avoiding bending forward was really important to her – but it took her much longer to do, much more effort to do it, and she remained quite certain that this red jelly would ooze from her disc if she bent forward.

In a behavioural approach to pain management, it’s important to understand the antecedents and consequences of a behaviour, so we can understand what elicits the behaviour, and what consequences occur to maintain it. In this woman’s case, any context where she might need to lean forward – such as making her bed, picking clothes up from the floor, putting shoes and socks on from standing, picking her handbag up, reaching into the back of her car to fetch something – elicited a thought (image) for her of her disc oozing out. Combined with her interpretation of the advice not to bend when she first sought help, her response was one of fear – and one thing we learn very early on as humans is that we should avoid things that generate fear.

The consequences of her avoiding forward flexion were many: her fears weren’t allayed except in the moment, and she remained highly concerned about the disc bulge; she felt relieved in the moment as she avoided doing the movements she thought would harm her. This is negative reinforcement – fear (negative experience) is reduced (withdrawn) because she avoided the movement (relief – I’ve avoided a disaster!). She also avoided doing many things she’d enjoyed – like playing tennis (bending down to pick up a ball? No way!), picking her clothes up from the floor (she had a home helper do this, and do her washing), she’d changed the shoes she wore to avoid having to bend down to tie laces, and she sat on the floor of her shower to avoid having to bend down to wash her legs.

When we started to work on helping her move on with life, it was really important to understand the unique combination of context and function of her strategies for avoiding bending. Just telling her that her discs wouldn’t bulge out wouldn’t alter those powerful images in her mind! We can’t unlearn an association once we’ve learned it. And she’d been practicing this association between an image of disc bulge oozing and bending – and all the activities where we bend, and all the associations she’d made between jelly wobbling (because the disc is basically jelly, right?), and all the other things she knew about jelly – it’s not strong, it can smear over things, it wobbles, it can melt…. My approach was to help her experience doing without the dire consequences, starting from simple and moving to more challenging over time. More on this next week!

As clinicians, our words matter, as do the images and models we have in our clinics. We also must be mindful that the people we try to help will bring their history and the unique associations they’ve made between things they’ve been told, metaphors they’ve heard and the values that matter to them. Respecting all those vitally important and idiosyncratic aspects of being human is integral to a behavioural approach to pain rehabilitation. Let’s not put people into algorithms or groups or boxes, because if we take the time to learn about their uniqueness we can create more powerful – and fun! approaches to helping them live their lives again.

Fairbank J, Couper J, Davies J, et al. The Oswestry low back pain questionnaire.
Physiotherapy 1980;66:271–3.

Pain model – helping to target change


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

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

The “BIO”

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

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

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

Pain-the-experience

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

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

Judgement or appraisal

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

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

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

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

Pain behaviours

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

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

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

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

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

Social context

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

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

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

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

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

…the “so what” question and why it matters to take a break from work


At the conclusion of each of the courses I teach at University of Otago, I ask students the “so what” question. So what that we learned about neurobiology? So what that we discussed social constructs and how they shape pain behaviour? So what that we learn that thoughts and beliefs influence our pain experience? What does it all mean when we’re sitting with a person experiencing pain?

This last week I’ve been on a brief trip to the West Coast of the South Island of New Zealand Aotearoa. It is a wild and isolated part of our country. So wild that in parts the annual rainfall is over 6,000mm (see the map below!), and the wind blows so that the trees grow almost horizontally. For two days there was no power (and thus no internet, no cellphone cover!) and the gravel road to our campsite was closed until 7.00pm while the power lines were being replaced… I won’t talk about the sandflies and mosquitoes – the size of helicopters!! Well perhaps I exaggerate…

Taking a break from talking pain brings me to my “so what” question. Why do I spend my time trying to help people, especially clinicians, learn about pain? Why am I so focused on bringing a narrative that says “we can’t reduce or remove all pain” and at the same time “it’s possible to live well with pain”? What is my “so what”?

Stepping back from the crabby discourse I see so often on social media – like whether hands on or hands off is preferable, whether pain is sensation or perception, whether exercise should be this or that – I think my purpose is to remind everyone, and especially clinicians, that when we’re working with someone who has weird pain that hangs around our job is to find out what this person’s main concern is. And to remember that irrespective of how much we help someone change their pain, ultimately, they will go on to live their own life. Not ours. Theirs.

It struck me from time to time as I swatted sandflies (helicopter sized ones, of course), that many of us work within inflexible processes and systems that demand we identify goals after only just meeting a person. It struck me that the people who develop policy and who get involved in establishing processes are not engaged in public discourse, at least, not in social media where so many of “us” hang out. I pondered how it is that the collective weight of allied health – numbering far more than our medical colleagues – has not yet shifted our conversations about best ways to help people with pain away from symptom reduction, despite our lack of success when it comes to pain. How we continually fixate on “if the pain goes, the person will go back to normal”. How we tout exercise as The Cure despite such small effect sizes on pain intensity, quality and disability. And for exercise, we could substitute needles, manual therapy, taping, medications…. How we want simple recipes, algorithms that sort people into “responders” and “non-responders” while failing to acknowledge that so far we haven’t achieved this and besides these approaches assume that everyone wants the same outcome.

Taking a break from work offers me a chance to refresh my perspective. My pain, it must be said, doesn’t take a break. And that, folks, is the reality for so many people in our communities. Because persistent pain persists. When we’re at work, and when we’re on holiday. When we’re trying to sleep, and when we’re busy with family. And we all come from what was our normal lifestyle. And some clinicians think that if only we would – understand pain neurobiology, pace, exercise, eat right, use mindfulness, check our thinking and get rid of maladaptive beliefs… then life would be fine. But would that life be what I want? Would it look like my life? Would I be able to be ME inside that regimen of all those things?

Clinicians, we can often omit to ask “what’s your main concern about your pain?” And we often forget to find out what that person values in their life. Our goal setting turns out to be OUR goals, often based on pain reduction – or focused on achieving X, Y, Z. Doing this means attention is paid to the end point – but then the process of getting there is left out. And life is a process (OK a journey) not a goal (OK a destination).

As I approach my teaching this year, and my interactions online, I want to emphasise respecting the autonomy and strengths people living with pain bring with them. That a person’s life and choices are theirs to make – and if we try to change people, we’ll fail. We can invite people to experiment with, play with, test, try out different ways of being, but unless we understand a person’s values and work with them, we’re probably not going get more than superficial compliance. Let’s be respectful and honour the complexity of each individual we encounter – and let’s not treat them as part of an algorithm.

Modifying pain behaviour (1)


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

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

Ethics

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

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

Behaviour change done badly

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

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

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

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

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

Being human in behaviour change

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

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

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

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

That’s hard!

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

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

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

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

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


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

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

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

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

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

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

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

Why do we care about this?

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

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

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

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

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

Where am I going with this?

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

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

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

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

Musing on “the social” in pain rehabilitation


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

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

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

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

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

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

Should we, can we do anything to help?

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

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

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

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

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

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

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

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

Radical? Radical!


Welcome to 2021! An interesting start to the year for my US friends, more of the same for my UK and European friends, and life in NZ and Australia goes on with an added dash of uncertainty because of the new! improved! more contagious Covid19!

I’ve had a few weeks away from my usual Monday morning writing routine, but I return to the blog today with a lovely book I’ve reviewed. There’s no secret about my personal preference for ACT both for living and flourishing in daily life, and for those of us living with persistent pain. Today’s book review is about Radical Relief: A guide to overcome chronic pain, written by Joe Tatta, physiotherapist. From the outset, I’ll acknowledge that I was sent a free promotional copy of this book – but I would have bought it anyway, I promise!

There are a few books I recommend for clinicians working with people living with pain. The first is a textbook called Pain: A textbook for health professionals which is one of the most accessible and clinically useful books for clinicians wanting to enhance their understanding beyond what they learned in undergrad training.

Another is an old CBT-based book written by Turk and Winter called The Pain Survival Guide which runs through the main conventional approaches to managing pain. It’s written for people with pain, and while there are certain parts I’m not certain are really well-supported by research, it offers the standard strategies that have been included in multi- and inter-professional pain management for years.

And now, Radical Relief arrives on the scene, and I think it will be another of those references I will use over and again. Radical Relief is written for people living with pain. It offers a “radical” way to returning to life, drawing on well-established, well-researched strategies for pain management from an Acceptance and Commitment Therapy perspective. For those who are not familiar with ACT, one of the major premises is that often our problem-solving mind gets in the way of us living a values-aligned life, particularly when we’re confronted with a situation or experience we can’t change.

Now I’m going to take a moment to comment on pain changing. Pain changes all the time. The intensity can go up and down. The quality might be intrusive – or fade into the background. It might be there all the time, or intermittently, or unexpectedly. There are so many factors that influence our experience of pain that it wouldn’t be at all surprising to find that most clinicians find that their patients experience at least some relief during or after treatment. And sometimes we clinicians like to take credit for that – and often we want to focus on getting a report from the patient that yes, pain has reduced. Sometimes we’ll almost do anything we can to find a way to “reduce the pain.” Part of the definition of pain (see here for the full definition and notes) includes the word “unpleasant” – “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”, so I think it’s safe to assume most of us don’t want to experience pain. And yet we know that for many people, reducing pain intensity is not possible. That’s a fact that some clinicians don’t want to recognise. How we as clinicians handle our inability to alter pain intensity is a test of our willingness to read and acknowledge scientific literature.

OK, back to the book. ACT is based on the idea that underpinning successfully navigating life is a concept called psychological flexibility. This concept consists of six processes that appear to underpin how we can be psychologically flexible in the face of an unpredictable and challenging world. Joe Tatta, in this book, articulates these processes as they can be employed by people living with pain. How to be open, willing, aware and do what matters to you in the presence of pain, and all that this experience brings with it.

I won’t review how ACT might help – there’s plenty of information available on the web, including my blog, for those who aren’t familiar with it. I will, though, say that the way Joe writes is clear, succinct and empty of jargon. He writes as if he’s speaking directly to the reader. The sentences are short and full of questions to ask yourself. The chapters are also short and offer activities to try. Joe identifies that some of the activities might feel odd – they’re not “typical” of many self-help suggestions, because Joe invites readers to experiment, to try, to see what happens, to be open to what happens. This is refreshing!

Some features of this book that I particularly like are the room to write your own thoughts and responses down. The certificate at the end of the book is delightful. And the illustrations – gorgeous!

I think if I was a person who came across this book I’d be intrigued by it. I think I’d find it easy to read, and I’d be willing to try at least some of the ways Joe suggests. If I worked through this with a clinician, I think I’d find it even more useful. It’s not easy to step outside of yourself and recognise your mind’s sticky thoughts and attitudes. It’s hard to make changes on your own. So it’s not the way the book is written that means I’d suggest using it with the support of a coach or clinician, it’s simply the nature of motivation to change in the face of pain.

Now ACT has been found to be no more (and no less) effective than CBT (or indeed any other treatment approach we have: surgery, medications, exercise) for persistent pain. This doesn’t mean ACT “doesn’t work” – it just means that, like any of our approaches to persistent pain management, it’s not a case of one size fits all, or one therapy will be the magic bullet. I’ve advocated for a while that precisely because we have no over-arching “successful” treatment, this offers clinicians and people with pain an opportunity to find out the unique combination of strategies that are helpful for this person at this time and in this context. ACT, although it includes the term “acceptance” does not mean “resignation” – I prefer the term “willingness” to experience pain (rather than doing everything possible to suppress or avoid pain) in the pursuit of what matters. ACT’s functional contextualist philosophy means we need to ask “how well is this working?” about everything we do – because the ultimate measure of success is about whether the approach is helping us do what matters in a particular context. I think that’s pretty radical myself. And, like this book, while we won’t always have a “perfect” outcome, we can MOVE.

M= Make room for unpleasant sensations (and thoughts!)

O= Open up and observe non-judgementally

V= Values guide life, not pain

E= Engage in activities in line with your values

Thanks for the opportunity to review your book Joe, I appreciated it very much.