Chronic pain

When living with pain is too hard


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

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

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

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

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

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

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

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

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

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

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

Why did I choose to summarise this paper?

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

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

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

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

My thoughts (briefly!) are:

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

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

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

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

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

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

Knowledge gaps for working together


Whenever we work with someone living with pain, we form a team. A team, by definition, is “a distinguishable set of two or more people who interact dynamically, interdependently, and adaptively towards a common and valued goal/objective/mission” (Salas et al., 1992). So while many clinicians work outside an interprofessional team, they are always working in a team consisting of at least the person with pain, and themselves.

There’s a good deal of research on teamwork, and a heap of references in pain management literature on the benefits and, indeed, the need, to work in a team for best outcomes (both in terms of effects for the person and in terms of cost-effectiveness). Gilliam and colleagues (2018) demonstrate that long-term outcomes are retained by participants attending an interdisciplinary pain rehabilitation programme, while Guildford and colleaguees (2018) also showed reductions in analgesic use during an interdisciplinary pain management programme. It’s not new news folks!

Teamwork is well-investigated in health, particularly interprofessional/interdisciplinary teamwork. Much of this research, however, is focused on nursing and medicine interactions, with rather less attention paid to allied health and nursing/medicine teamwork. This matters because while nursing and medicine are moving away from the old medical model, the professions probably represent the two most similar in terms of clinical models. And this matters because one thing that’s found to be important for good teamwork in health is having a shared mental model (for example – from operation room – Wilson, 2019).

All good so far – nothing new here, move along, right?

Hold it right there, folks.

You see, when we work together in a team, particularly for people with persistent pain, we often generate a heap of new information about the person we hope to help. In New Zealand, the person will have completed the ePPOC set of questionnaires, then there will probably have been some physical performance testing, maybe some basic ROM, and muscle testing, perhaps some daily life functioning tasks, certainly some more psychological questionnaires, if the person sees a medical practitioner, there will be the obligatory bloods, urine, perhaps imaging – you know what I mean! A heap of information that each clinician deems necessary and I haven’t yet gone into each clinician’s desire to “hear the story from the beginning again!”

What’s lacking in our research on teamwork in persistent pain is discussion about how we assemble this information so that we move from a multidisciplinary team – Multidisciplinary teams involve people from different health disciplines working alongside one another while using clinical models drawn from their own professional discipline (Körner, 2010) – to an interprofessional/interdisciplinary team – Interdisciplinary teams also involve people from different health disciplines working alongside one another but meet regularly to collaborate on treatment goals and priorities (Ruan & Kaye, 2016). There is limited hierarchy and considerable communication, cooperation and often overlap between team members (Körner, 2010).

Not only a lack of a shared mental model (because we all think our model is The Best), we also lack an understanding of team processes. How do we develop an effective way to communicate, to cooperate, to deal with conflict in an open and creative way, to coordinate our work so things happen at the right time, to be coached so that the team-as-a-whole moves in the same direction and new people coming to the team feel part of the culture? Not forgetting that teams work in an ever-changing context, and team membership changes over time, while the overall team culture is something that emerges from a team collective (Salas, et al., 2015).

Are pain rehabilitation teams different from teams working in older person’s health, or palliative care, or as part of a primary health team?

I suspect so, but I can’t find good research detailing how our pain teams are different. It’s like a black box of mystery (a bit like interprofessional pain management programmes – one murky black box out of which a person pops!)

I’m left with this feeling that because teams in pain management and rehabilitation have become scarce in most part of the US, and that this is where all the research funding lives, there’s not very much that we actually know. We don’t know who holds the positions of power – is it the medical practitioner? the psychologist? the physiotherapist? the occupational therapist? Who makes the call as to when it’s time to work with the person to move from pain reduction to living well alongside pain? Are the team members actually using a common model or are they really working in parallel? And how can a team be maintained over time – I’ve had the privilege of working in a very close-knit and effective team for some years, but I’ve seen that team become smaller, fragmented, more multidisciplinary than interprofessional, with limited attention to processes of induction, developing effective conflict management, and really becoming weakened.

There is one conclusion I can draw from the mountains of material I’ve been learning and it’s this: it’s impossible to put a bunch of clinicians together and call them a team without putting effort in to develop those processes I’ve listed above. And when was the last time you attended a CPD session on “how to work in a team?”

Gilliam, W. P., Craner, J. R., Cunningham, J. L., Evans, M. M., Luedtke, C. A., Morrison, E. J., Sperry, J. A., & Loukianova, L. L. (2018). Longitudinal Treatment Outcomes for an Interdisciplinary Pain Rehabilitation Program: Comparisons of Subjective and Objective Outcomes on the Basis of Opioid Use Status. J Pain, 19(6), 678-689. https://doi.org/10.1016/j.jpain.2018.02.010

Guildford, B. J., Daly-Eichenhardt, A., Hill, B., Sanderson, K., & McCracken, L. M. (2018). Analgesic reduction during an interdisciplinary pain management programme: treatment effects and processes of change. Br J Pain, 12(2), 72-86. https://doi.org/10.1177/2049463717734016

Körner, M. (2010). Interprofessional teamwork in medical rehabilitation: a comparison of multidisciplinary and interdisciplinary team approach. Clinical Rehabilitation, 24(8), 745-755. https://doi.org/10.1177/0269215510367538

Ruan, X., & Kaye, A. D. (2016). A Call for Saving Interdisciplinary Pain Management. J Orthop Sports Phys Ther, 46(12), 1021-1023. https://doi.org/10.2519/jospt.2016.0611

Salas, E., Dickinson, T. L., Converse, S. A., & Tannenbaum, S. I. (1992). Toward an understanding of team performance and training. In Teams: Their training and performance. (pp. 3-29). Ablex Publishing.

Salas, E., Shuffler, M. L., Thayer, A. L., Bedwell, W. L., & Lazzara, E. H. (2015). Understanding and Improving Teamwork in Organizations: A Scientifically Based Practical Guide. Human Resource Management, 54(4), 599-622. https://doi.org/10.1002/hrm.21628

Wilson, A. (2019). Creating and applying shared mental models in the operating room. Journal of Perioperative Nursing, 32(3), 33.

Not all pain is the same


When I started working in the field of persistent pain, many of the approaches used were based on the idea that every pain was the same. Oh yes, of course we had neuropathic pain and inflammatory pain, but our treatments tended to approach each person as if they were pretty similar. We later refined that approach and started to look at people in groups. In the service I worked in, we used the Westhaven-Yale Multidimensional Pain Inventory which generates three main psychologically-based profiles – and for a long time this was a very useful way of establishing who needed the three-week residential programme, and who would do well with a briefer outpatient programme.

Well things change over time, and we’ve become more aware of what Clifford Woolf describes as a “mechanism-based” classification approach (Woolf, 2004). In this approach, clinicians try to establish the dominant mechanistic group in which a person’s pain might be classified, then suit the treatment to that mechanism. This means clinicians diagnose inflammatory pain, neuropathic pain, and nociplastic pain – and use what looks like the best combination of medications to suit the mechanisms. For example, for neuropathic pain it’s more likely people will be given gabapentin/pregabalin and a tricyclic antidepressant in combination than an opioid.

There’s a problem, though – in fact, TWO problems I can see.

Methods for identifying pain mechanistic groups

The first problem is that we don’t have wonderful methods for establishing the main mechanistic groups.

In fact, in a recent very large and thorough review of methods used to discriminate between each category, the authors found that “few methods have been validated for discrimination between pain mechanism categories”, and although there was “general convergence” between methods, there was also “some disagreement” (not that this is unfamiliar to anyone who reads research!) Shraim, Masse-Alarie, & Hodges, 2021).

What was interesting, albeit not too unexpected, was the overlap of findings between categories because people present with mixed types of pain; and that many of the studies attempted to only discriminate between two of the groups, rather than more. Having said this, the authors identified five groups of method used to help clinicians and researchers distinguish between pain mechanisms: clinical examination; quantitative sensory testing; imaging; diagnostic and laboratory tests; and questionnaires asking participants to describe their experiences.

Now I know that research studies aim to be a little more rigorous than clinical practice, but that should sound an alarm when we begin looking at what we need to do in clinical practice. “Subjective” pain examination included aggravating and easing factors, pain location and pain characteristics (can anyone tell me when pain is NOT subjective?). It also included psychological factors (although my radar went off at this – more of this later!). Physical examination (is this supposed to be ‘objective’ pain examination?) included general clinical assessment, general neurological testing, nerve provocation testing and neurodynamics, clinical bedside somatosensory function testing, movement and functional testing. Quantitative sensory testing had no greater degree of sensitive, specificity and reliability than physical examination and “subjective” history, and laboratory testing was pretty poor despite superficially looking more “accurate.” A similar state exists for questionnaires – oh lordy!

So these authors found 200 methods that could be used to determine which pain fits into a specific box, but overall the results are pretty underwhelming for clinicians wanting a direction for their approach. It’s not helped that the current “gold standard” used is – wait for it – clinician-based diagnosis.

Where are we left? Well, I think we’re not that far away from where we were in the 1990’s and early 2000s. We really don’t have a clear way to distinguish between the various mechanisms, and many people likely present with pain that includes more than mechanism. However – these authors provide a table summarising the commonly used, and possibly most likely approaches to diagnose pain mechanisms, and this is useful for those of us who want the “best guess” for now.

Problem two

At the beginning of this piece, I said there were two problems with using mechanistic descriptors. You can see the problems with reliability, specificity and so on – and the lack of agreement in the research and likely “mixed” presentations we will see in clinic – from my comments above (do read the whole article, though, it’s well worth it).

The second problem is that these descriptors, even when accurate and reliable, don’t tell us anything about the person experiencing pain. Unless, and until we have effective treatments for each of these mechanisms, we are inevitably running experiments to see what might work for this person in front of us. And this means we find less utility in diagnosis than we would if we drew on a case formulation approach.

What’s the difference? Diagnosis allows us to group “like with like” – on the basis of similar underlying mechanisms. We can then treat those mechanisms, and voila! the person recovers! It works well with fractures, with infectious diseases, and even with diabetes. It doesn’t work as well when we don’t have treatments we can use on the mechanisms. For example, although we can diagnose many neurological disorders, for so many of them we have very poor treatments. This means people live with their disease – and this is where a diagnosis falls down. It does not tell us HOW this person will experience their disease. Diagnosis doesn’t explain illness, disability, functional status, or participation.

And, because all of us are unique, this means that a one-size-fits-all approach to persistent pain (or even an algorithm, subtype, or subgroup) isn’t likely to offer clinicians or the person with pain a useful path towards well-being.

You’ll remember I said my radar went off with the psychological assessments included in the methods used to identify a pain mechanism. My reason is this: pain is a stressor. Even a paper-cut captures my attention (albeit just a little until I use a hand sanitiser!), my heart rate goes up a bit, I’m alerted to the experience and want to get away from it. Now imagine if that pain continued. Maybe variably, maybe constantly, maybe intermittently. And imagine if I couldn’t get a good understanding of what’s going on. And perhaps I was being questioned by my clinicians – and maybe even stigmatised. “What do you mean, you have pain we can’t diagnose, we can’t image, we can’t treat?” I’m guessing by now, perhaps some months after my pain started, I’d be feeling a bit irritated, perhaps a bit low in mood, my sleep might not be great, I might find it hard to do what matters to me because I’m not sure if I’m doing myself some harm.

What we don’t know in many studies of pain “predictors” is whether they are cause or effect. There is undoubtedly an association between various measures of pain-related anxiety, avoidance, low mood, thinking the worst. What we do not know is whether this was present before the pain came on – or whether it came afterwards.

So, to my mind, using psychological factors as part of diagnosis risks labelling people and what are probably normal responses to abnormal experiences. Let’s not do that.

Where am I left after reading this paper? I’m glad someone set about doing this review. I think it offers a good summary of the state of play, and identifies some of the current problems with a mechanistic approach. We need to get consensus on definitions, we need far better methods, we need to stop using the word “subjective pain examination” (because ALL pain is subjective), and we need to leave psychological factors out of diagnosis until we can clearly identify which came first.

Shraim, M. A., Masse-Alarie, H., & Hodges, P. W. (2021, Apr 1). Methods to discriminate between mechanism-based categories of pain experienced in the musculoskeletal system: a systematic review. Pain, 162(4), 1007-1037. https://doi.org/10.1097/j.pain.0000000000002113

Woolf CJ. Pain: moving from symptom control toward mechanism-specific pharmacologic management. Ann Intern Med 2004;140:441–51.

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.

…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.

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.