Chronic pain

On labels and boundaries


What we call a disease matters. It matters to the person because a diagnosis is a marker: this problem is known, it’s recognised, it’s real (Mengshoel, Sim, Ahlsen & Madden, 2017). It matters to the clinician, particularly medical practitioners, but also those clinicians working within a largely “disease-oriented” framework (for example, physiotherapists, osteopaths) (Haskins, Osmotherly, Rivett, 2015; Kennedy, 2017). It matters also to insurance companies, or funding providers – who is in, and who is out.

The diagnostic label itself hides a great many assumptions. The ways in which diagnostic labels are grouped reflects assumptions about underlying similarities (and distinctions) between groups of symptoms. Added to this complex situation is uncertainty in how the person presents: are they a “typical” presentation? Who decides what is ‘typical’? Think of the classic signs of chest pain signifying myocardial infarct – but this applies to males, and less so to females. Women are less likely to be resuscitated after chest pain, and also less likely to be transported to the Emergency Department using lights and sirens (Lewis, Zeger, Li, Mann, Newgard, Haynes et al, 2019).

It is the physician’s quest for certainty and the patient’s illusion of certainty, however, that leads to many of the current decision-making techniques in the practice of medicine. Evidenced-based medicine seeks to provide information to physicians and patients to allow for more informed recommendations, and yet our current evidence base is imperfect owing to unreliable clinical data, incomplete taxonomy of disease, and a weaker focus on clinical reasoning.

Correia, Tiago. (2017). Revisiting Medicalization: A Critique of the Assumptions of What Counts As Medical Knowledge. Frontiers in Sociology, 2. doi: 10.3389/fsoc.2017.00014

With any luck, clinicians working in persistent pain management will have moved beyond a simple medical diagnosis when working with someone. While a diagnosis is crucial for acute management, once the pain has been hanging around for a while the illness-based aspects of dealing with pain become more important.

What do I mean by this? Illness is about the personal experience of living with a disease. If we think of disease as being about biological aspects, illness is about the “what it is like to live with” the disease. Talcott Parsons, a sociologist at Harvard University wrote that illness could be considered “deviant” behaviour: “…behaviour which is defined in sociological terms as failing in some way to fulfill the institutionally defined expectations of one or more of the roles in which the individual is implicated in the society.”(Parsons, 1951). While Parson’s language and some of his concepts represent the outdated views of society at the time, the notion of illness being “what it is like to” live with a disease is an important distinction for us as clinicians.

For clinicians working in pain management/rehabilitation, particularly with people who have been living with pain for months or years, understanding that on top of the biomedical label, each person also has months or years of the stress of dealing with that problem. For any of us, experiencing pain even for a short time can be puzzling, represents changes in how we view our bodies, often elicits irritation or anger, sometimes sadness and typically, actions to avoid or control the problem.

Now here’s the point of my writing this blog today. If any of us face an unnamed challenge, or if our situation doesn’t change despite “following all the rules” (thinking Covid-19 maybe?), whatever typical stress response we get is likely to be elicited. If we’re inclined to worry, we’ll probably worry. If we’re inclined to withdraw from being with others, we’ll probably do that. If we tend to have trouble sleeping, we might do that. If we get irritated and tetchy when we’re stress, well we’re probably going to do that too. This is normal.

Now if someone saw you and me today, and went through a structured clinical interview for diagnosis, I’m sure I’d at least begin to show signs of anxiety or depression. Two weeks of saturation coverage of Covid-19 will do that to you, and add the challenges of being penned up in my home without any shops open, and I’m probably going to be not my usual self.

Let’s think about the person we see who has been living with persistent pain for a few years. This person is enduring pain every single day. Has possibly looked everywhere for something to help – usually we’d think of this person as pretty motivated, but for some clinicians this begins to look like “doctor shopping”. The person might have fallen out with one or two previous clinicians who persisted in treating the problem the same way they’d treat an acute pain problem. This begins to look like “difficult patient” territory. Add to this some mood problems, lots of anxiety about everything else in life – and lo! we have a person ripe for a psychiatric diagnosis. Or at the least, “yellow flags” (risk factors for prolonged disability).

Now, the whole idea of risk factors for ongoing disability was intended to help us as clinicians pay attention to doing some different for people with those risk factors in their lives. That’s right: for clinicians to take on the responsibility for either assessing in more detail, reviewing more frequently, integrating active coping strategies into treatment, and perhaps referring for specialised care if that was warranted.

Yellow flags are not some kind of warning for clinicians to negatively label, perhaps even diagnose, a person as being “difficult”. Yellow flags should elicit from clinicians (us) an awareness that this person is vulnerable. That’s right, vulnerable – and needing more care.

I’ve heard talk over the years of clinicians stepping out of their scope of practice when looking at psychosocial risk factors. I’ve always thought that it’s a good thing to be aware of risk factors so that something can be done about them, because this person is a greater risk of poor outcomes. The problem arises when someone, without appropriate training, gives a person a psychiatric label. There are a few labels that spring to mind: personality disordered, especially borderline personality disordered; attachment disordered; somatic disorder…

The problem with labels is that they don’t get erased when the clinician who gave them that diagnosis discharges them. Those labels live forever on clinical files, insurance files, claims files, medical and hospital notes. Those labels can, and often do, invoke highly discriminatory behaviour. One person sent to Emergency Department with chest pain was told they should come back when they have a real problem (duh, chest pain = real problem) because, sitting at the top of the list of diagnoses was “somatic disorder”.

Clinicians – do not use labels without thought. Don’t use labels that sound technical (thinking ‘catastrophising’), don’t make a diagnosis that is outside of your scope, don’t over-interpret a questionnaire score, don’t judge people because today they’re distressed and cranky, or worried and tearful. For goodness’ sake: stick to your clinical boundaries!

Haskins, R., Osmotherly, P. G., & Rivett, D. A. (2015). Diagnostic clinical prediction rules for specific subtypes of low back pain: a systematic review. Journal of Orthopaedic & Sports Physical Therapy, 45(2), 61-76, A61-64.

Kennedy, Ashley Graham. (2017). Managing uncertainty in diagnostic practice. Journal of Evaluation in Clinical Practice, 23(5), 959-963.

Lewis, J. F., Zeger, S. L., Li, X., Mann, N. C., Newgard, C. D., Haynes, S., . . . McCarthy, M. L. (2019). Gender Differences in the Quality of EMS Care Nationwide for Chest Pain and Out-of-Hospital Cardiac Arrest. Womens Health Issues, 29(2), 116-124. doi: 10.1016/j.whi.2018.10.007

Mengshoel, Anne Marit, Sim, Julius, Ahlsen, Birgitte, & Madden, Sue. (2017). Diagnostic experience of patients with fibromyalgia – A meta-ethnography. Chronic Illness, 14(3), 194-211. doi: 10.1177/1742395317718035

Parsons, Talcott. (1951). Illness and the role of the physician: a sociological perspective. American Journal of orthopsychiatry, 21(3), 452.

Coronavirus (COVID19), catastrophising – and caution


I don’t often leap aboard a popular topic and blog about it, but I’m making an exception right now because, although COVID19 is new – catastrophising is not.

There are a number of people who really do not like the term “catastrophising”. There are comments that this is a pejorative term, used to deny the validity of a person’s experience. That it means the person is exaggerating or being melodramatic or in some way not believable.

But as I read the many, many headlines about COVID19, including the international toilet paper frenzy, reading about Vitamin C or “anti-inflammatory foods” to combat it, I even saw a serious post about using hands-on therapy to “shift the toxins”…. And I wonder whether we can take a good hard look at ourselves and our response to this virus.

Firstly, getting accurate information about COVID19 has been difficult. There are some authoritative sources “out there” but they’re not necessarily the most sexy sites to visit. Not many memes coming out of our Ministry of Health in New Zealand! Much of the information we read on a daily basis is in the general news media, giving a “personal story” slant on “what COVID19 means”. Some really good information coming from our politicians in NZ – but also some scaremongering from the political opposition.

Does this sound familiar? Where does the good, accurate and evidence-based information about persistent pain come from? And in the absence of readily accessible and “memeific” information, where do people go to learn about pain?

Secondly, it’s not the virus itself that’s causing the majority of trouble for people – except for the small percentage for whom the virus is deadly, mainly because of comorbidity, and health vulnerability. People who are older, already have immune compromise, and who are not able to access good healthcare are most at risk. The rest of us are experiencing the fallout of containment measures, economic insecurity, and lack of toilet paper. Sorry, couldn’t resist that last one. Seriously, most of us are being affected by the cancellation of meetings, by the need to self-isolate, by travel restrictions, by people having less money to spend because suddenly their jobs are less secure – watching my savings melt day by day…

Sounds quite similar to the experiences of people with persistent pain: often it’s not the pain itself that’s so awful, but the effects of losing contact with people you love, of having to take medications to reduce pain that leave you feeling dreadful, of not being able to play sports or do work – the loss of income security, access to healthcare, connection with people who matter. These are amongst the most debilitating aspects of living with persistent pain, let along the pain…

If you’ve found it hard to think of anything else but COVID19. If you’ve had trouble taking your mind off how you’re going to get by if patients can’t come to see you because they’re worried about giving you COVID19, or of catching it from you – that’s rumination, or brooding on it.

If you’ve caught yourself heading to the supermarket to get some extra pantry staples “just in case”. If you’ve found yourself checking in to see what your local health authorities are recommending. If you’ve been wondering if you should shut your business down for a while – and then been wondering what you’re going to do for a income if you do that. If you’ve looked up your bank balance and wondered what you’re going to do if your kids are off school for the next month, while you’re meant to be at work and there’s no-one to look after them…. you’re magnifying, or estimating that the demands of this situation might well exceed your current resources to deal with it.

If it all feels a bit overwhelming and you’re not really sure what to do next. If you’re feeling pretty stuck and getting a bit panicky. If this feels just way too much to handle – that’s hopelessness, or feeling really overloaded.

And each of these three clusters of cognitions, emotions and behaviours are part of the catastrophising construct.

Do they feel normal to you? Do you think you’re exaggerating? Do you think your reaction is over the top? No? Well you’d be (generally) quite right (except maybe the toilet paper hoarding… that’s just weird). Thinking the worst is normal in the face of uncertainty. Some commentators and researchers believe it’s one way we learn to convey our need for social support (Bailey, McWilliams & Dick, 2012; Lackner & Gurtman, 2004; Thorn, Keefe & Anderson, 2004).

At the same time, I want to take a pragmatic and contextual look at catastrophising.

From a pragmatic perspective, right now it’s completely appropriate to be a bit discombobulated by COVID19. And many of us have a lot of things to consider over the next few days/weeks as the situation changes on a daily and even hourly basis. The things we’re doing right now to plan for the worst are largely useful. That’s the point of being able to catastrophise – in the right context, in a rapidly evolving health and economic crisis, being able to consider the various futures and put plans in place to deal with them is probably a good thing. That’s the action part of the catastrophising construct.

The difficulty NOT checking your news media feed, and feeling a bit overwhelmed by it all seems to be a fairly reasonable response to an unreasonable situation. Logic, right?

So, from a pragmatic perspective right now, in the face of uncertainty, most of us are doing exactly what has got humans out of trouble many times in our history.

Now, what if we shift the context to 24 months in the future. COVID19 has now been largely contained, a vaccine is available, the virus hasn’t evolved, and while the economy is slowed, it is gradually picking up. What if, at that time, we have a friend who is still nervously scanning the headlines for the latest information on the virus? What if that friend is still stockpiling pasta and toilet paper and hand cleanser? What if that friend is still feeling like there’s not much they can do except hunker down and hide?

Now, my guess is that many of us would think this is being a bit extreme. Maybe even a bit OTT. Especially given that there’s likely to have been a LOT of media coverage of the COVID19 vaccine, and most economic activity will be returning. We might begin suggesting (gently) to the person doing the stockpiling that maybe it’s not necessary to keep on doing so. We’d think it’s a good idea to give them the new information about COVID19. We’d probably suggest that although they’re freaking out, maybe it’s time to reconsider the threat.

Context matters – catastrophising can be useful right now. In 24 months: not so much. New information will likely help us take a more realistic look at what’s going on with COVID19. It’s not that individual people won’t be personally affected if they get sick, but probably the crisis that’s happening right now will be over.

What about the validity of the person’s emotional response to their feared situation? Would we be dismissive? I hope not – because anyone who is still freaking out about COVID19 in 24 months time is still in distress! But we might be more willing to share the good news about recovery with them, so they don’t continue feeling overwhelmed and distressed. We’d not be likely to let them carry on thinking the worst, and we certainly wouldn’t be telling them their response is perfectly valid and appropriate for the threat.

What of the person experiencing pain and thinking the worst, feeling pretty awful and hopeless? Would we support them to stay in that highly distressed state? Would we say “there, there, you’re really feeling bad, aren’t you, here’s a tissue” – and walk away? Would we hesitate to suggest that perhaps they’re magnifying the problem and that they might have some other options?
Think about it. Catastrophising is a well-validated and studied construct. Hundreds of studies have shown that catastrophising is associated with poorer outcomes in so many situations – childbirth, knee replacements, hip replacements, multi-trauma orthopaedics, discomfort during internal atrial cardioversion, length of hospital stay after knee replacement, use of medications – on and on and on.

Catastrophising gets a bad rap. And woe betide anyone who TELLS someone “you’re catastrophising” because you seriously deserve a slap. Sheesh! But take a moment to consider the adverse impact on the person of thinking the worst… sleepless nights, endlessly checking their body, feeling overwhelmed and overloaded, having trouble thinking of anything else, perhaps anxious and depressed… this is not a recipe for recovery.

Call it what you will – over-estimating the threat of something, and under-estimating your resources can act as a galvaniser for preparation and action in the short term and in the context of uncertainty. When there are ways to move forward, and the threat is maybe not so great as you thought, and maybe you can do something to help yourself – then it’s probably time for us to show strong compassion. That’s compassion that cares enough to have difficult conversations, that helps another person consider their response in light of new information, and is willing to be there to help the person re-evaluate their next best steps.

Keep safe. Keep your social distance. Wash your hands. Don’t go out if you’re sick. Be sensible with the toilet paper.

Bailey, S. J., McWilliams, L. A., & Dick, B. D. (2012). Expanding the social communication model of pain: are adult attachment characteristics associated with observers’ pain-related evaluations? Rehabil Psychol, 57(1), 27-34. doi: 10.1037/a0026237

Lackner, Jeffrey M., & Gurtman, Michael B. (2004). Pain catastrophizing and interpersonal problems: a circumplex analysis of the communal coping model. Pain, 110(3), 597-604. doi: 10.1016/j.pain.2004.04.011

Thorn, Beverly E., Keefe, Francis J., & Anderson, Timothy. (2004). The communal coping model and interpersonal context: Problems or process? Pain, 110(3), 505-507.

“Intuition” – and clinical reasoning


Intuition is one of two main modes of thinking, according to Daniel Kahneman. Intuition is fast, considers the whole rather than components of the whole, and intuition feels effortless. Intuition can also be wrong – but often isn’t (Gruppen, Woolliscroft & Wolf, 1988).

We use intuition well when we’ve been exposed to many examples of the phenomenon under consideration – for example, if we’ve seen a lot of patients with similar health problems. We don’t use intuition well when we buy into biases or stereotypes.

The alternative to intuition is slower thinking, that typically breaks the considerations into smaller pieces, often following a linear process where data (information) is collected and assembled. This kind of thinking is reasonably easy to investigate, whereas intuition is much more difficult to study (it’s fast, people can’t describe how they arrived at a conclusion, so it’s not amenable to self-report).

Why worry about it? Well, intuition is the key strategy described by allied health, particularly physiotherapists, when considering whether a person needs further assessment for those pesky psychosocial factors (Man, Kumar, Jones & Edwards, 2019). What this means in practical terms is that a patient who doesn’t fit the stereotypical “risky yellow flags patient” may have to fail at conventional treatment before being directed towards a multidisciplinary, or biopsychosocial, approach.

What might be an alternative?

I’m pretty fortunate in that I work in a service where participants to my group programme have already completed a series of questionnaires as a requirement to participate in pain rehabilitation and management. So everyone I see will have some information I can draw on without my needing to add anything more. Of course, I can argue that some of the questionnaires don’t help me very much because they’re fairly biased towards a CBT model of chronic pain management. But the principle is pretty clear: everyone gets to complete the questionnaires ahead of time.

Practically, this isn’t always easy. Many people don’t have good literacy skills, don’t have a computer, hate the thought of paperwork (even in electronic form), and some of the questions don’t work very well/aren’t relevant to the people I see, so they choose not to fill them in. There’s no opportunity to discuss the responses with a clinician, so it’s not easy to decide whether the questions apply.

But what happens when we leave the questionnaires to luck, intuition or “the psychologist”?

Firstly, we know the relevance of psychosocial risk factors. We know this so well – it’s been a theme throughout the years I’ve worked as a clinician in pain rehabilitation and management. If we don’t include these in our formulation (treatment planning), we’re probably not including them as key predictors for outcomes…

We can’t rely on our intuition because for many of us, those people who do have risk factors will only overtly show these once they’ve failed to progress – it’s at that time they’re more distressed, frustrated and afraid, so behavioural markers for psychosocial risk factors are more evident. This also means someone will have to work with the person who is now more distressed than they needed to be.

We don’t use our team to best advantage. Why refer someone to an occupational therapist, to a psychologist, to a counsellor if we don’t know why the person needs to see them? This can lead to a distinct lack of briefing or information about the referral to the person with pain – and sometimes, it seems, to the person deciding they don’t need, or want, that referral even when it would be in their best interests.

Mostly, though, I think it begins to bias our thinking. We can become judgemental – why doesn’t this person do their home-based exercise programme? Why are they just going through the motions? Why do they keep on complaining about their pain? We can begin to question the person’s motivation, their lifestyle, the validity of their perspective.

The real problem?

Our clinical reasoning models don’t help us very much when it comes to synthesising psychosocial factors. When we’re dealing with those factors using “intuition” we don’t have to incorporate them into our models – because intuition isn’t explicit, it’s quick and difficult to articulate. To date there are very few transprofessional models of pain management, and even fewer that attempt to link theoretical constructs with what we see in front of us. That synthesis of biological, social and psychological constructs that uniquely explains why this person is presenting in this way at this time, and what factors may be maintaining this person’s predicament. It’s no wonder that, in a recent study my colleagues and I have been conducting, we’ve found very few clinicians collaborating on a case formulation.

My suspicion is that until we develop a collaborative case formulation clinical reasoning approach that can integrate these many factors in a sensible and logical way, our “intuition” is likely to leave us floundering. The casualties of this particular mess are the people we hope to treat. I wonder if it’s time to work together, physiotherapists, occupational therapists, psychologists and medical practitioners (and all other variants of health practitioner!). Do we need to create a synthesis that works as a transprofessional model of pain?

Gruppen LD, Woolliscroft JO, Wolf FM. The contribution of different components of the clinical encounter in generating and eliminating diagnostic hypotheses. In research in medical education: proceedings of the annual conference. Med Educ. 1988;27:242‐247.

Man, Isabella, Kumar, Saravana, Jones, Mark, & Edwards, Ian. (2019). An exploration of psychosocial practice within private practice musculoskeletal physiotherapy: A cross-sectional survey. Musculoskeletal Science and Practice, 43, 58-63. doi: https://doi.org/10.1016/j.msksp.2019.06.004

Widerström, Birgitta, Rasmussen-Barr, Eva, & Boström, Carina. (2019). Aspects influencing clinical reasoning and decision-making when matching treatment to patients with low back pain in primary healthcare. Musculoskeletal Science and Practice, 41, 6-14. doi: https://doi.org/10.1016/j.msksp.2019.02.003

Flare-ups and how to handle them


If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

Who am I? The sense of self in chronic/persistent pain


One of the most pervasive descriptions of what it is like to live with persistent pain is the loss of sense of self. Time after time in qualitative research we read about people feeling they’re in “limbo land”, losing confidence that they can do what matters in their lives, feeling stigmatised and isolated – not themselves any more. An in-depth meta-ethnography of qualitative research showed that pain undermined participation, ability to carry out daily activities, stymied a sense of the future, and intruded on the sense of self (MacNeela, Doyle, O’Gorman, Ruane & McGuire, 2015).

To understand the idea of “self”, I poked about a little in the literature, and found a title I like “Becoming who you are” (Koole, Schlinkert, Maldei & Baumann, 2019). The theoretical propositions of this paper relate more to self-determination than self-concept – but that title “Becoming who you are” resonated strongly with me.

When I read through pain rehabilitation research and theory, especially that dealing with learning how to live well with pain, I rarely see anything written about how we might help people who feel alienated from their sense of self. Scarcely a word. Except in the psychological literature. There’s a bit about self-discrepancy theory (See E. Tory Higgins works for much more about self-discrepancy), where the “imagined self”, the “real self”, the “feared self” and the “ought self” don’t match – but not much about what to do about helping people restore a sense of self, particularly in physical and “functional” rehabilitation.

Silvia Sze Wai Kwok and colleagues (2016) argue that psychological flexibility can play a role in helping people adjust to chronic pain. They found that psychological flexibility mediated between self-discrepancy (how close is my current self to my feared or ideal self?) and pain outcomes (distress, disability and so on). In other words, the degree to which people could flexibly adjust their goals and actions to suit what they could and couldn’t do made a difference.

This seems like common sense. Kinda. As the authors put it: “recognition of self worth and self-values could be attuned through flexible (re)construction of self-concept in response to changing contexts. These adaptations and regulatory functions then in turn may predict the subjective feelings of pain interference, emotional distress and pain tolerance level perceived.”

So my question is: how often does this become openly discussed in pain rehabilitation? Particularly by occupational therapists and physiotherapists – the clinicians who most often work on goals and helping people achieve them?

Whether a person is “motivated” to pursue important goals depends on whether the goals are important to them and whether they think they’ll successfully achieve them. When someone is “non-compliant” it’s because either the rehabilitation activities are not as important as something else in the person’s life, OR they’re not at all confident they can be successful at it. An enormous part of our job as rehabilitation professionals is helping people re-examine what they want to do and helping them adjust how to achieve the underlying values, even if the particular goal isn’t possible – yet. So, for example, if a person really values being a conscientious worker but can’t sustain a full working day, we can either help them fell OK about being conscientious for fewer hours, or we can make the work less demanding. I see this as an especially valuable contribution from occupational therapists.

Should rehabilitation clinicians be involved in this kind of “self-concept” work? I think so – especially occupational therapists. Occupational therapists are about doing, being and becoming – by doing things, we express who we are, and what we choose to engage in also shapes our perceptions of ourselves. As therapists we can’t help but influence a person’s self-concept – if we’re hoping to increase self-efficacy, we’re automatically influencing self-concept. If we’re working on goals, we’re influencing self-concept. If we’re working on participation in life, we’re working on self-concept.

And physiotherapists? Self-concept? Yep – of course. If we’re helping someone do exercise, that’s going to influence that person’s beliefs about exercise and their capabilities – that in turn is going to influence self-concept. (psst! it might be even more powerful if movements are done in the context of daily life, where feedback is real, meaningful and ever-present).

Persistent pain challenges the automatic assumptions people hold about what they can and can’t do, what they’re good at, what’s important in life, and how to engage with “the world” at large. Our job as clinicians is to be sensitive to just how confronting it is to find that what used to be effortless and meaningful is now daunting and requires more concentration and thought than we ever believed. I think that’s part of our job, irrespective of professional labels.

Koole, Sander L., Schlinkert, Caroline, Maldei, Tobias, & Baumann, Nicola. (2019). Becoming who you are: An integrative review of self-determination theory and personality systems interactions theory. Journal of Personality, 87(1), 15-36. doi: 10.1111/jopy.12380

Kwok, Silvia Sze Wai, Chan, Esther Chin Chi, Chen, Phoon Ping, & Lo, Barbara Chuen Yee. (2016). The “self” in pain: The role of psychological inflexibility in chronic pain adjustment. Journal of Behavioral Medicine, 39(5), 908-915.

MacNeela, Padraig, Doyle, Catherine, O’Gorman, David, Ruane, Nancy, & McGuire, Brian E. (2015). Experiences of chronic low back pain: a meta-ethnography of qualitative research. Health Psychology Review, 9(1), 63-82.

Having The Conversation…


Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

There are two of us in this…


Today’s post is another one where there’s very little to guide my thinking… Have you ever wondered why we read so much research looking at the characteristics of the people who look for help with their pain – yet not nearly as much about us, the people who do the helping?

There are studies about us – thanks Ben – and others! (Darlow, Dowell, Baxter, Mathieson, Perr & Dean, 2013; Farin, Gramm & Schmidt, 2013; Parsons, Harding, Breen, Foster, Pincus, Vogel & Underwood, 2007). We know some things are helpful for people with pain: things like listening capabilities (Matthias, Bair, Nyland, Huffman, Stubbs, Damush & Kroenke, 2010); empathy (Roche & Harmon, 2017); trustworthiness (Sessa & Meconi, 2015); goal setting (Gardner, Refshague, McAuley, Hubscher, Goodall & Smith, 2018).

We also know that clinicians who are themselves fear-avoidant tend to avoid encouraging people to remain active, tend to recommend more time off work and more analgesia (see Farin, Gramm & Schmidt, 2013; but also Bartys, Frederiksen, Bendix & Burton, 2017). We also know there is very little investigation of our behaviours and attitudes (Henry & Matthias, 2018). It’s not a sexy area of study, sadly.

So, today I want to point out that there are two of us in a clinic room: yes, the person with all their concerns, catastrophising, depression, avoidance and psychological inflexibility, but we are also in the room. Just as we know couples will vary their behaviour in response to words and actions (Ballus-Creus, Rangel, Penarroya, Perez & Leff, 2014; Cano, Miller & Loree, 2009), I’m pretty certain that the same things happen between a clinician and a person with pain.

What if our attitudes towards pain made a difference? (we know it does). What if underneath our talk of helping people with pain lies a shadow-land where actually we are afraid of pain and distress, where we sincerely believe that it’s unethical to allow people to feel pain and distress because it makes us uncomfortable? And if we are uneasy with another’s distress, or if we are uneasy with another’s presumed distress (because we would be distressed in their place), what might this mean for our approach to pain rehabilitation?

We all think we’re being person-centred in our treatment, I’m sure. Yet at the same time, I think there’s a risk of failing to look at our own blind spots. One of these is our motivation to help. Why do we work in this space? Is it out of a hero complex? To be “the one” who can find the cause, fix the problem, reduce the pain and have a happy patient? Is it out of a desire to be loved? Or because it’s an endlessly fascinating area with so much new research and so much complexity?

What if we have to have a hard conversation? What if our conversation confronts OUR belief that pain is bad, that all pain can change if we just try hard enough and avoid “nocebic language”? In the face of seeing people who have done all the therapies, been the model patient, worked really hard to get well but still have intense and intrusive pain, could we be Pollyanna and change the world by suggesting that person do it all again? Or try yet another something?

How we handle this situation is not yet clear. We have so little guidance as to how best to help – in the past (from the 1980’s, 1990’s, 2000’s) the way forward was clear: “Hurt does not equal harm, we will help you do more despite your pain because pain may change but in the meantime life is carrying on and you’re missing out.” Then along came Moseley, Butler and Louw and acolytes telling us that just by explaining neurobiology and doing graded motor imagery or mirror therapy or graded desensitisation, pain could (read = would) change and because neuroplasticity, pain would go! In fact, some in this group have made it clear that a CBT approach to pain, where learning to live alongside pain, learning to accept that perhaps not all pain reduces, is “shortchanging” people with pain. Kind of like giving up.

But here’s the thing for me: what if, in the pursuit of pain reduction, people lose their relationships, their jobs and stop doing leisure things? What if the pain doesn’t change? What if the pain only changes a little? When does a person with pain decide when is enough?

You see, it is not sexy to admit that pain may not change despite our best efforts. Most of our treatments research shows a group of people who get some relief, a smaller group who get a lot of relief, a group who actually get worse, and most who make no change at all. I want to know how clinicians who really, truly believe in a treatment for all pain, and that all pain changes, handle the people who don’t respond? Because even with the very best approaches in all the world, there is nothing that provides a 100% positive response to pain (except death, and we don’t know what that feels like).

While we espouse person-centredness and informed consent, I think the option of learning to live well alongside pain is rarely given air time. What might be happening more commonly is a narrative where, to avoid our own distress and the risk of “nocebo” or giving up, clinicians present an ever-optimistic picture of “life without pain” if the person will only try hard enough. Driven in part by clinician’s shadow-land fear of pain (and assumption that it’s horrible, awful and a fate worse than…), and by the desire to be loved, thought of as heroic, perhaps compassionate – and nice and good person, and maybe even driven by fear of how to handle a disappointed, distressed person who may themselves feel let down because we don’t have easy answers to persistent pain.

We can dress this narrative up in many ways. We can call to neuroplasticity always being a thing (but remember that nerves that wire together, fire together … and remain there for all time, able to reactivate any time the alternate paths aren’t used) (Clem, & Schiller, 2016; Hayes & Hofmann, 2018). And of course, humans have the additional capability of language and the myriad neuronal connections that allow us to relate one word to many different experiences, objects, relationships. We can call it being positive, enhancing the placebo, being encouraging. We can say we’re on the patient’s side, we only want the best. We can say we know they can and will make changes if we’re positive enough, if we’re good at our therapy, if we believe….

But, is it ethical to present only half the picture? To talk about pain reduction as if it’s the only goal worth going for? To not discuss the “what if it doesn’t help?” To keep self-management, and acceptance and adjusting to an altered self concept out of our conversations, so that people living with pain may not ever know that it IS a thing and can be a very good thing? How is that providing informed consent?

In case anyone’s worrying, I’m honest about my stance on pain: it’s not that I don’t care (because I really do), but pain is often not the problem. Instead it’s having a good relationship with a partner, having fulfilling work, being able to relax and be grateful for a beautiful day or a soft dog or a child’s laugh. I encourage people to look not at what they can’t do, but what they can. At what we can make of what we have. At what’s important and how we can do more that’s aligned with our values. And of it being OK to feel sad when we can’t do things, and angry, and withdrawn and frustrated – because all of these emotions, like all our experiences, are part of life. What matters is how we handle these things. I hope we can allow them to be present, then let them fade as they do over time, making room for new and different experiences that will also come, and then go.

Ballus-Creus, Carles, Rangel, M., Penarroya, Alba, Perez, Jordi, & Leff, Julian. (2014). Expressed emotion among relatives of chronic pain patients, the interaction between relatives’ behaviours and patients’ pain experience. International Journal of Social Psychiatry, 60(2), 197-205.

Bartys, Serena, Frederiksen, Pernille, Bendix, Tom, & Burton, Kim. (2017). System influences on work disability due to low back pain: An international evidence synthesis. Health Policy, 121(8), 903-912. doi: https://doi.org/10.1016/j.healthpol.2017.05.011

Cano, Annmarie, Miller, Lisa Renee, & Loree, Amy. (2009). Spouse beliefs about partner chronic pain. The Journal of Pain, 10(5), 486-492. doi: http://dx.doi.org/10.1016/j.jpain.2008.11.005

Clem, Roger L., & Schiller, Daniela. (2016). New Learning and Unlearning: Strangers or Accomplices in Threat Memory Attenuation? Trends in Neurosciences, 39(5), 340-351. doi: https://doi.org/10.1016/j.tins.2016.03.003

Darlow, Ben, Dowell, Anthony, Baxter, G. David, Mathieson, Fiona, Perry, Meredith, & Dean, Sarah. (2013). The Enduring Impact of What Clinicians Say to People With Low Back Pain. Annals of Family Medicine, 11(6), 527-534. doi: 10.1370/afm.1518

Farin, Erik, Gramm, Lukas, & Schmidt, Erika. (2013). The patient-physician relationship in patients with chronic low back pain as a predictor of outcomes after rehabilitation. Journal of Behavioral Medicine, 36(3), 246-258.

Gardner, Tania, Refshauge, Kathryn, McAuley, James, Hübscher, Markus, Goodall, Stephen, & Smith, Lorraine. (2018). Goal setting practice in chronic low back pain. What is current practice and is it affected by beliefs and attitudes? Physiotherapy theory and practice, 1-11.

Hayes, Steven C., & Hofmann, Stefan G. (2018). Survival circuits and therapy: from automaticity to the conscious experience of fear and anxiety. Current Opinion in Behavioral Sciences, 24, 21-25. doi: https://doi.org/10.1016/j.cobeha.2018.02.006

Henry, Stephen G., & Matthias, Marianne S. (2018). Patient-Clinician Communication About Pain: A Conceptual Model and Narrative Review. Pain Medicine, 19(11), 2154-2165. doi: 10.1093/pm/pny003

Matthias, Marianne S., Bair, Matthew J., Nyland, Kathryn A., Huffman, Monica A., Stubbs, Dawana L., Damush, Teresa M., & Kroenke, Kurt. (2010). Self-management support and communication from nurse care managers compared with primary care physicians: A focus group study of patients with chronic musculoskeletal pain. Pain Management Nursing, 11(1), 26-34. doi: http://dx.doi.org/10.1016/j.pmn.2008.12.003

Parsons, Suzanne, Harding, Geoffrey, Breen, Alan, Foster, Nadine, Pincus, Tamar, Vogel, Steve, & Underwood, Martin. (2007). The influence of patients’ and primary care practitioners’ beliefs and expectations about chronic musculoskeletal pain on the process of care: A systematic review of qualitative studies. Clinical Journal of Pain Vol 23(1) Jan 2007, 91-98.

Roche, Jenny, & Harmon, Dominic. (2017). Exploring the facets of empathy and pain in clinical practice: a review. Pain Practice.

Sessa, Paola, & Meconi, Federica. (2015). Perceived trustworthiness shapes neural empathic responses toward others’ pain. Neuropsychologia, 79, 97-105. doi: https://doi.org/10.1016/j.neuropsychologia.2015.10.028

Uncertainty: perennial controversies in pain understanding


As I write this post today, yet again there are new theories being proposed for that most common of experiences: pain. Not only theoretical controversies, but even the definition of pain is being debated – is pain an “aversive” experience? An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury. Some researchers have recently “found” a new nociceptive fibre (though they persist in calling it a “pain fibre” – once again perpetuating the idea that pain is one and the same with nociception).

One of the conversations is whether pain is a sensation, or an emotion, or something else. When I went to University and studied psychology, sensation was defined as “information transmitted by sensory receptors” – in other words, activity in the sensory receptors prior to perception is classified as sensation. Emotions are also defined in psychology, and depending on the theory being followed might be defined as “a complex reaction pattern, involving experiential, behavioral, and physiological elements.” Perception involves recognising and interpreting sensory information, and invokes the idea of awareness as an essential feature. (This is a good place to begin searching for definition – click)

The term aversive indicates “a physiological or emotional response indicating dislike for a stimulus. It is usually accompanied by withdrawal from or avoidance of the objectionable stimulus.” So pain, unlike most sensory experiences also contains an intrinsic element of distaste and avoidance – even people who pursue painful rituals like body suspension will acknowledge that the experience of being pierced is not pleasant but do it to achieve something else, often a feeling of achievement, accomplishment, meeting a challenge. Doesn’t sound too different from people who enjoy running a marathon, or lifting heavy weights.

The new proposed definition also includes the phrase “caused by, or resembling that caused by actual or potential tissue damage” – because we learn to associate the experience we call pain (or whatever word we use in our first language) with what happens when we graze our skin, get pricked by a needle, or knock our shin. For potential tissue damage, think of those staring contests we used to do as kids: who will blink first? Or consider how long we can sit before we’ll move to relieve the numbness-then-ouch on our buttocks! I prefer the term “associate” than “caused by” because we don’t always perceive pain at the time of tissue damage (think about the bruises we find in the morning after a sports game – but we don’t recall exactly how we got them).

So, for what it’s worth, pain isn’t simply a sensation (the experience is always aversive, and invokes an emotion alongside the sensory characteristics) and it’s not simply an emotionit’s a perception, an interpretation of sensory input via nociceptors in the context of current goals (and consequently, attentional focus), social meaning and values, and past experiences (both personal and vicarious). These latter aspects are really important because it’s not uncommon to fail to perceive “ouch” during an important sports game when the attention is elsewhere, and some beautiful experiments have shown that our perception of a potentially painful experience is influenced by what we’re told about the stimulus (Arntz & Claassens, 2004).

The controversies over a definition of pain matter because after the original definition of pain was agreed upon, it was finally possible for researchers, clinicians and commentators to distinguish between the experience and its sensory apparatus. This is important because it enables a focus beyond what goes on in the tissues, to the person’s experience. Prior to defining pain in this way, if a person claimed to have pain but there was no nociceptive activity, he or she was considered lying or mentally unwell. Traces of this attitude continue to this day, sadly.

Focusing on the person’s experience has allowed treatment to shift beyond “issues in the tissues” to help the person deal with what has happened. Even in the absence of current tissue damage and pain, people can continue to be fearful of potential tissue damage and potential pain. Should anyone question this, I usually point out the extraordinary lifestyle changes made by people who have had angina. These people may not be currently experiencing any chest pain at all – but yet protect themselves from the potential of chest pain because “it might happen again.”

A shift away from addressing sensory stimuli towards helping a person who is experiencing pain involves moving away from a biological-only model of disease. We usually call this a biomedical model where what goes on in the body is considered separately from the person who is the subject of “disease”. Of course, this is a straw man argument because biomedical models have been extending to include the person for at least 30 years. Most medical practitioners would want to address the “why has this person fallen and fractured their neck of femur” alongside “fixing the neck of femur fracture with a plate and pin.” But, it troubles me greatly when I hear people say “but what about the bio?” when it comes to incorporating a broad, multifactorial understanding of people experiencing pain into pain rehabilitation. A multifactorial model (call it biopsychosocial if you will) has never negated the biological contributing factors – but has instead placed those factors into relative importance with psychological and social contributions. And psychological and social factors seem to have more to contribute to our experience of pain and resultant disability than, in particular, what happens to a tendon or disc.

And this leads me to the perennial problem of what do we do if pain doesn’t settle, despite our best efforts. This problem is a real and ongoing challenge for both the person experiencing pain, and his or her health. I think it’s a question many health professionals shy away from. Are we afraid we’ve let the person down? Let ourselves down? Failed somehow? What is it like for the person with pain – constantly wondering if this next treatment will do the trick? Or the next? Or whether they’ve failed? Or is it something sinister? There’s no doubt that pain is aversive and it can invade so much of life – but if so much of our experience of pain is related to how we interpret it, what if we were able to re-interpret this experience as less sinister, less distressing?

Health professionals are powerful attitude shapers. Could we use this influence to help people be a little less afraid of pain, and maybe a little more confident that although pain is inherently aversive, humans are infinitely creative and resourceful and can make peace with pain’s presence?

“‘Specialized cutaneous Schwann cells initiate pain sensation”. Abdo H, Calvo-Enrique L, Martinez Lopez J, Song J, Zhang MD, Usoskin D, El Manira A, Adameyko I, Hjerling-Leffler J, Ernfors P.
Science. doi:10.1126/science.aax6452

Arntz A, Claassens L. The meaning of pain influences its experienced intensity. Pain. 2004;109: 20–25. pmid:15082122

Cannabis and cannabinoids for persistent pain?


Over the last 12 months New Zealanders have entered into the debate about cannabis and cannabinoids for medical use. In the coming year we’ll hear even more about cannabis as we consider legalising cannabis for recreational use. There is so much rhetoric around the issue, and so much misinformation I thought it high time (see what I did there?!) to write about where I see the research is at for cannabis and cannabinoids for persistent pain.

For the purposes of this blog, I’m going to use the following definitions: Cannabis = the plant; cannabis-based medication = registered extracts (either synthetic or from the plant) in standardised quantities with quality assurance; cannabinoids = substances found in cannabis that may or may not be synthesised into cannabis-based medication.

I’m going to divide this post into two: one part is about cannabis and cannabis-based medication for persistent pain; and the other is about cannabis for recreational purposes.

Recreational use

Cannabis is really popular in New Zealand. Growing up in Gisborne, one of the prime growing regions because of its long, warm summers, cannabis was common. I’ll put my hand on my heart and say I didn’t try it because I was a bit of a nerd and didn’t even try alcohol until I’d left home at 17!

Ministry of Health estimates that eleven percent of adults aged 15 years and over reported using cannabis in the last 12 months (defined here as cannabis users). Cannabis was used by 15% of men and 8.0% of women. Māori adults and adults living in the most deprived areas were more likely to report using cannabis in the last 12 months. Thirty-four percent of cannabis users reported using cannabis at least weekly in the last 12 months. Male cannabis users were more likely to report using cannabis at least weekly in the last 12 months. The NZ Drug Foundation reports that ” In the 2015/16 year, 80% of the adult population reported drinking alcohol once or more – 31% reported drinking at least twice a week.”

The harms from cannabis are real: for vulnerable people, particularly teens with developing brains, the foetus, and those with other mental health problems are more likely to experience adverse effects including psychosis. This risk increases with the greater THC content. The mix of cannabis plus alcohol is nasty… But I’m more concerned about the harms from prohibition.

Prohibition for alcohol didn’t work. Illicit stills, home brewing, fruit-based alcohol concoctions were all readily available during the prohibition era in New Zealand (see this about Hokonui Moonshine). Why would we think prohibition would be effective for cannabis? In fact, the harms from prohibition are this: limited calm and reasoned discussion about adverse effects of cannabis; disproportionate targeting of Maori for possessing cannabis; the use is underground so there is no quality control of the product; gangs use their control of cannabis to threaten purchasers; the real health and addiction problems of cannabis can’t be addressed because it’s illegal while the funding used by police and the justice system could be redirected towards helping the vulnerable. And there are undoubtedly other harms as well.

For my money, I’m quite comfortable with legalising and then controlling the quality of cannabis for sale in New Zealand. With good safeguards around the age required for purchase and redeploying the money currently spent policing and imprisoning people for cannabis crimes to health services, I think we’d do ourselves a great favour. Not quite so happy about commercialising the product because with competition there’s always an increase in efforts to sell more, but with good controls I think it will be far better than our current situation.

Now. Onto cannabis for pain, and cannabis-based medications for persistent pain.

“Pain-related use”

I’ve been reading a LOT of research exploring cannabis and cannabinoids for persistent pain. To limit the extent just a little, I’ve looked only at cannabis and cannabis-based medications for neuropathic pain. This is for a couple of reasons: cancer pain is different from non-cancer pain, and there are often different considerations for cancer pain. Most of the animal research (rats, mice) uses a neuropathic pain model. Neuropathic pain is one of the more difficult persistent pain problems to treat pharmacologically. There’s more, and better quality, research into cannabis, cannabis-based medications and cannabinoids in neuropathic pain than any other pain mechanism. BUT it’s important NOT to extrapolate from findings in rats and mice, and for neuropathic pain, to all forms of pain in humans. That being said, here’s where things are at.

In neuropathic pain, cannabis-based medications are either a combination of THC + CBD or they’re straight THC. CBD has not been studied on its own for pain. This is important because, according to a study I’ve just been involved in, and from listening to people about their experiences of using cannabis for pain, most people think a CBD-based or CBD-heavy drug is “good for pain”. Recently I reviewed a study of cannabis for fibromyalgia (here) where it was only the plant with THC or THC + CBD that gave people pain reduction. There is some thought that CBD augments the effects of THC, but only in certain proportions – there’s a reasonably small window in which THC + CBD is helpful in pain.

The controlled studies, using reasonable methods (and believe me, there are a LOT of studies using poor methods, and even poorer reporting) show that THC or THC + CBD are the only combinations to provide pain reduction.

The question we should be asking (and always ask before adopting a new treatment) is whether this is more effective than what else is on offer, and whether the adverse effects are fewer.

At this stage I have to say the evidence is pretty skinny. Lots of studies, yes, but not well-conducted or reported, and the change in pain intensity is small. So small that the change in pain scores was a reduction of 4mm on a 1 – 100mm visual analogue scale. And the number needed to treat for one person (to achieve a 30% reduction in pain) were 27 (38.5% response to treatment, 33% response to placebo) (Campbell, Stockings & Nielsen, 2019).

Now this finding conflicts with the many people who report using cannabis (not cannabis-based medications). Again, drawing from the study I have been involved in, many of the participants indicated that they found cannabis helpful – although a good proportion also identified that cannabis didn’t actually take the pain away. And this is interesting. Why is it that people say they use cannabis for pain (and pain is the most common reason given for using “medicinal” cannabis in the US (Kosiba, Maisto & Ditre, 2019)?

Drawing from both the study I’ve been involved, and some hunches, here’s what I think might be happening (more research required):

  • Cannabis promotes a sense of euphoria. Now that doesn’t mean feeling super-high, but it does mean feeling better than before you had it. And if you’re experiencing pain that doesn’t go away, feeling good is such a contrast to what you’re feeling most of the time, I wonder if this explains some of the effect. Particularly as it’s the THC or THC + CBD combo that seems to have greatest effect in research.
  • Cannabis often promotes better sleep, and this is one consistent report from the study I’ve been involved in. Disturbed sleep is, as we know, associated with greater pain the following day, and most people with persistent pain report rotten sleep (Simpson, Scott-Sutherland, Gautam, Sethna & Haack, 2018). Maybe one effect of cannabis use is to help people sleep better – but what are the effects of cannabis on sleep architecture in the long run?
  • Using cannabis involves a ritual. A ritual either of baking, or of preparing to smoke weed. Rituals invoke a meaning response (Blease, Annoni & Hutchinson, 2018; Lindenfors, 2019). They prepare us for what is to follow. In time, we anticipate what happens next. In the case of cannabis, inhaled cannabis takes effect within seconds of inhaling, so it becomes a very potent learned expectation. In baked goods, the effect is far slower – but there’s little doubt that inhaling the scent of freshly baked goodies elicits all sorts of yummy expectations, whether the product is cannabis-laced or not! The meaning response (“placebo effect”) is an incredibly powerful product of our own nervous system – and I have no problems attributing at least part of the reported analgesic effect of cannabis to the meaning and expectations people hold towards its use. Add to the expectation some pharmacological feel-good substances, and it’s potent!
  • Cannabis can be used prn whenever the person feels the need. While some people limit their use of cannabis to an evening toke, from our study some people indicated they used cannabis repeatedly through the day and evening. Because it’s not possible to kill yourself with a dose of cannabis, and because the euphoric effects quickly drop (if they’ve even been a significant part of the experience) cannabis use can be a pick-me-up any time. There are good, and not so good effects from this: prn medication use isn’t thought to be helpful because it can promote increased use over time. That doesn’t appear to be the case for cannabis. Again, prn use of any medication is thought to perhaps address distress rather than pain intensity, so it may mean people are less inclined to use active coping than reach for cannabis. I don’t know, because the research hasn’t been carried out. What does seem clear is that because of its rapid onset and relatively mild side effects as compared with opioids or the usual drugs for neuropathic pain, people are more positive about using cannabis as needed rather than these alternative drugs.
  • Cannabis has fewer strongly sedating effects than many other medications for neuropathic pain. By this I do not mean it has no sedating effects (see above!). But participants in the study I’ve been involved in said they could function, they could participate in things that mattered to them while using cannabis, whereas with opioids or other drugs for neuropathic pain, they couldn’t because they felt groggy, spaced out, or just couldn’t think. I think this is really interesting. Maybe it’s worth being able to think straight is more important to our participants than having better pain reduction. The sedating effects of cannabis effects seem to wear off more quickly, particularly for people who use it a lot.
  • Cannabis can reduce anxiety – but so also can it increase anxiety. People living with persistent pain, particularly weird neuropathic pain, live with the uncertainty of when it will flare up, when the “electric shocks” will start up again, wondering if it will settle down or hang around. This doesn’t engender a state of calm! Some forms of cannabis can reduce anxiety (particularly CBD-heavy forms), but THC-high (see what I did again!!) increase anxiety. It’s a mixed bag especially given that establishing the precise chemical consistency of plant material is pretty difficult – particularly by growers in the illegal market of NZ.

Summary – and a bit of science

Writing this blog I’m sure will bring out a heap of pro-cannabis people who will argue that I’m ignoring the “strong evidence” for cannabis for pain relief. Before anyone does – believe me, I’ve read a heap of papers, and to be perfectly honest, I’m alarmed at the state of the research. Not only are many studies failing to identify the pain mechanisms addressed (neuropathic pain is the most commonly studied, but it’s also common to find studies with mixed cohorts); studies are often short – for a chronic, ongoing problem like persistent pain, we need to have studies carried out over 12 months or more, 8 weeks or less is completely insufficient; the outcome measures used are primarily pain intensity using a unidimensional index like a numeric rating scale – come on guys, pain is NOT a unidimensional problem, and surely we’ve learned from opioid trials that pain intensity isn’t the best outcome measure for a long-term problem? What about participation in life? What about disability reduction? What about sleep? What about reduced use of healthcare? Many of the studies are in rats and mice and last time I checked, I’m not a rat or a mouse, and my physiology is a little different; the analysis of studies is often awful with no mention of dropout rates, no responder analysis, no description of adverse effects and tiny, tiny sample sizes. Worse, the small sample sizes exclude people with comorbid problems like depression, anxiety, insomnia, drug and alcohol use (and yet these are characteristics of many people seeking help for persistent pain). Additionally, most studies don’t indicate whether the people taking part in the study are naive to cannabis – people who use cannabis regularly are less likely to be bothered by adverse effects, so studies aren’t describing what may happen in people who are new to the effects of cannabis.

I could go on, but I think there are enough questions about the state of the research into cannabis for pain for us to be pretty cautious about asking medical practitioners (who may not have the time I’ve dedicated to reading the research) to sign their name to a prescription for a cannabis-based treatment, or cannabis itself. Doctors should think carefully before prescribing because, in health, we expect that medical practitioners know what substance they’re prescribing, the effects of that substance, what it should be used for, what harms might come from it, what interactions it might have with other medications, and that the product available has consistent quality-assured content.

As for understanding why people continue to use cannabis for pain – I’m keen to study this in more detail. Why is there such a disparity between what research shows and what people tell us? What might explain this? I’m absolutely not doubting the experience of people who say that cannabis helps – I’m just curious about how this is coming about, because it doesn’t look like it’s purely from the pharmacological effects of the plant.

References

Blease, C., Annoni, M., & Hutchinson, P. (2018). Editors’ Introduction to Special Section on Meaning Response and the Placebo Effect. Perspectives in biology and medicine, 61(3), 349-352.

Campbell, G, Stockings, E, Nielsen, S. (2019). Understanding the evidence for medical cannabis and cannabis-based medicines for the treatment of chronic non-cancer pain. European Archives of Psychiatry and Clinical Neuroscience, 269. pp 135 – 144. https://doi.org/10.1007/s00406-018-0960-9

Kosiba, J, Maisto, S, Ditre, J. (2019). Patient-reported use of medical cannabis for pain, anxiety, and depression symptoms: Systematic review and meta-analysis. Social Science & Medicine, 233, pp 181-192. https://doi.org.10.1016/j.socscimed.2019.06.005

Lindenfors, P. (2019). Divine Placebo: Health and the Evolution of Religion. Human Ecology, 47(2), 157-163.

Simpson, N. S., Scott-Sutherland, J., Gautam, S., Sethna, N., & Haack, M. (2018). Chronic exposure to insufficient sleep alters processes of pain habituation and sensitization. Pain, 159(1), 33-40.

Informing — and knowing


Learning is perceived as a process of personal and social construction where people are actively involved in making sense of information they interact with, rather than passively receiving it (Kuhthau 2004). This cumulative and developmental process involves the whole person in thinking, acting, reflecting, discovering ideas, making connections, and transforming prior knowledge, skills, attitudes, and values into new knowledge (Dewey 1933).

I’m an educator for much of my time. When I think about it, I’ve been an educator for most of my clinical career – after all, when I helped people learn how to shower and dress again after a stroke, I was teaching. When I help someone work out how to organise their day to optimise energy levels, I’m teaching. And when I interact online in some of the Facebook groups I’m part of, I’m also teaching.

Teaching is the process of attending to people’s needs, experiences and feelings, and intervening so that they learn particular things, and go beyond the given.

http://infed.org/mobi/what-is-teaching/

When I look at what people do for continuing education, and also how we approach helping people with pain to understand something about how their nervous system works, I think we often do a fine job of providing information. “Information is to behaviour change as spaghetti is to a brick”, said Prof Bill Fordyce, father of behavioural approaches to pain management. As clinicians and educators we spend a great deal of time working out “what” people should/need to know. There’s talk of a “curriculum” for people living with pain so the basic concepts are provided. Information is the “what” – those facts, concepts and often context-free bites of data that are gathered together into information through analysing, cross-referencing, selecting, sorting, summarising or otherwise organising them (Stonier, 1997).

Perhaps where we’re less capable is in supporting people in the process of turning information into knowledge. Knowledge is about integrating information into meaning. It’s magic to see someone have that lightbulb moment when suddenly one bit of information connects with something else the person knows and it begins to make sense!

With CPD I wonder how many of us go to a course, then walk away with our heads jam-packed with new information – then when we walk into clinic we get caught up in the everyday of clinical life, and promptly forget how that new information we’ve stored relates to what we do.

I think the same when I listen to patients talk about what they’ve been told, perhaps about pain, or perhaps about ways they might do things – and they talk of these information bites as disconnected from their daily reality.

To me, the process of developing knowledge involves processing information into personal relevance. It means that, as we learn a new piece of information, we sift through what we already know and establish how the new information might be similar to or different from what we already know. We might ponder when, where, and how this new information can apply. We try using the new information to test its utility. We talk about “what does this mean” with other people as we do this.

A community of practice (Wenger) is a “group of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly”. In a community of practice, people who have become expert or more experienced in doing this activity share their expertise and “knacks of knowing” – novices spend time absorbing what the experts say and do, and ultimately learn to become expert themselves. Communities of practice are everywhere and in our internet and social media-based lives, communities of practice exist virtually as well.

Clinicians often turn to online discussions to carry out their process of turning information into knowledge. Through the debates and discussions (yes, and arguments and flame wars) clinicians become familiar with new information and discuss the implications for practice. It’s common to see clinicians use Instagram, Twitter, Facebook, blogging (yes!) as ways to not only produce information but to also make sense of it.

But when I think of comparable and positive opportunities for people living with pain who are also trying to make sense of the many different bites of information they’re provided with, I’m less certain there is a good place to go to be supported in this process. Much of our clinical treatment is carried out individually, one-to-one with patient. Because pain is invisible and so many people are hopeful the experience will be temporary, meeting with and discussing information about pain and ways to live with pain are rare. In fact, there’s plenty of evidence from research showing that people living with pain feel isolated, abandoned and judged (Cagle & Bunting, 2017; Collier, 2018; Wilbers, 2015). Not the best place to be when trying to put pieces of information together.

While as clinicians, we can offer much information – how good are we at helping people connect that information with what that person already knows? How can we – especially if we don’t experience pain? What would we know of the process of going to various therapists, being told many different things, of the highs and lows of benefits and failures?

I run a group programme called Springboard. It’s a six-week programme, one session a week, with home-based “missions” people can do over the week. I’ve always thought the magic happens not when I give out information, but when participants return with their experiences and share what they’ve learned with one another. I don’t the group is simply bridging a feeling of loneliness or stigma, although it certainly seems to do that. I think the magic happens because participants share what this information means to them, when participants help one another connect a new piece of information to what they already know. Because no-one knows better what the meaning of a new understanding is than people living with pain.

So I question us all. Clinicians – do we help people connect with others who are in the same boat to learn from one another? To make sense of what we try to tell them? People living with pain, do you have ways of sifting through new information so you can work out its relevance to you? Can we bring people together – experts in living well with pain and novices learning how this information might apply?

Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of social work in end-of-life & palliative care, 13(1), 27-43.

Collier, R. (2018). “Complainers, malingerers and drug-seekers”—the stigma of living with chronic pain. In: Can Med Assoc.

Dewey, J. (1933). How we think. a restatement of the relation of reflective thinking to the educative process (Rev. ed.), Boston, MA: D. C. Heath.

Kuhlthau, C.C. (2004). Seeking meaning: a process approach to library and
information services. (2nd ed.). Westport, CT: Libraries Unlimited.

Stonier, T. (1997). Information and meaning—An evolutionary perspective.
Berlin: Springer.

Wilbers, L. E. (2015). She has a pain problem, not a pill problem: Chronic pain management, stigma, and the family—An autoethnography. Humanity & Society, 39(1), 86-111.