What to do about acute low back pain

I should add another line to that heading: in one easy step! And I’d be inundated with hits and if I could cash in on them I’d be rich! And wrong.

If there was a simple recipe for success, I’d expect that by now we’d have it. The very fact that SO MANY options for managing a bout of low back pain exist is a good reason for skepticism should you ever get tempted to take a headline like mine as a cause for celebration. However I do want to talk about acute low back pain because I think clinicians are often probably doing it wrong.

First of all, low back pain doesn’t include pain that also goes down the leg. Let’s get the definitions clear before we talk! In 2008 a Delphi study by Dione, Dunn, Croft, Nachemson, Buchbinder, Walker and colleagues (2008) developed two definitions: a minimal definition, and an optimal definition. These definitions were developed for epidemiological studies and the minimal definition is very simple – “In the past 4 weeks, have you had pain in your low back?” and “If yes, was this pain bad enough to limit your usual activities of change your daily routine for more than one day?”

from Dionne, Dunn, Croft, Nachemson, Buchbinder, Walker et al, (2008)

Now when it comes to defining a first bout of acute low back pain, Ardakani, Leboeuf-Yde & Walker (2019) raise some very interesting points: researchers investigating acute low back pain don’t clearly distinguish between the factors associated with the disease of low back pain (as they put it, the onset of the very first episode) from its recurring episodes – as they put it, “the continued manifestations of the “disease”.” In fact, in their systematic review for identifying risk factors from “triggers” (their term for subsequent episodes), they could find only one study dealing with the true incidence of first time low back pain – and this was low back pain caused by sports injury. All the remaining studies either explored new episodes, or recurring episodes. The major problem with these studies? They didn’t define how long a person should have had no low back pain at baseline. And given many of us develop back pain in adolescence (see Franz, Wedderkopp, Jespersen, Texen and Leboeuf-Yde, 2014, or Jones & MacFarlane, 2005) for example) it’s probable that studies investigating those over 18 years old will include a lot of people who have had that first bout already.

The trajectories for those of us who do develop low back pain are also reasonably murky because of the challenges around definitions, and there are several studies with slightly different results as you’d expect. Essentially, though, most researchers find that there are three or four patterns that emerge from longitudinal studies: lucky ones who have one bout and no or low levels of pain thereafter; those who have persisting mild pain, those who have fluctuating bouts over time, and those who develop persistent and severe pain. Chen and colleagues (2018) found that “lower social class”, higher pain intensity at the beginning, the person’s perceptions of more challenging consequences and longer pain duration, and greater “passive” behavioural coping were most significantly associated with the more severe trajectory over five years.

So, what does this mean for clinicians – and how well are we doing?

Acute low back pain can really frightening for people, especially if the pain is severe. As clinicians generally choose this work because we care about people, we get hooked into wanting to reduce pain and help. There’s nothing wrong about this – unless it means we also get hooked into trying to offer something we cannot. We’re inclined to believe that people seek help for their back pain because of the pain – but as Mannion, Wieser & Elfering (2013) found from a study of over 1,000 people with back pain at the time of the survey, 72% hadn’t sought care over the previous four weeks; 28% had sought care – and most from more than one provider. Women were more likely to seek care, those who had experienced more previous bouts, those who had trouble with activities of daily living and more trouble with work activities. While pain intensity did feature, it wasn’t as much of a predictor as many clinicians would expect. Indeed, an earlier meta-analysis by Ferreira and colleagues (2010) found that disability was a stronger predictor for seeking treatment than pain intensity.

So what do clinicians focus on? I suspect, though I aim to be proven incorrect, that almost every clinician will ask “what is your pain intensity on a scale from 0 – 10?” Frankly, this question is one that irritates me no end because how on earth do you rate pain? Seriously. Yes, there are a lot of clinicians who then ask about activities a person wants to be able to do (yay!) though when we look at the treatments offered, I wonder how many follow through with practical goal-setting for daily activities like getting shoes and socks on, carrying the groceries, sitting while driving the car or at work… And treatments? the arguments on social media between clinicians would be fun to watch if only they weren’t accompanied by such vehemence!

What I don’t see are conversations about how we help people recognise that they’re likely to follow one of those four trajectories, and what we do to help people self manage a life alongside low back pain.

I don’t see much attention paid to helping people sleep well.

Lots of conversations about pain neurobiology – in an attempt to use this explanation to bring someone on board to engage in treatments.

I don’t see a lot of discussion about how to ask about the person’s main concern – perhaps it’s nothing to do with pain, but more about “my niece is coming to visit and I’m not sure I can cope with entertaining her and managing my back pain”, or “we’re coming up to the busy time at work and I can’t not go in, but when I get home I’m trashed, how can I manage that?”, or “Monday’s are our busiest day, and I have to keep going because the team needs me, what do I do?”

I wonder whether clinicians could be persuaded to get out of the way and stop confusing people with recipes or algorithms or “special exercises” that “must be done this way” – I wonder if we could offer some very simple steps: specific answers to the person’s main concerns (best form of reassurance there is!); goal setting around the things the person needs and wants to do over the first six to eight weeks; sleep strategies including some mindfulness because that’s likely to help long-term; and lots of encouragement as the person returns to activity. Developing a relationship with the person doesn’t need lots of prescriptive steps or cookie cutter programmes, it does mean listening, showing trust in the person’s own capabilities, and willingness to let go of a few sticky thoughts we’ve acquired during our training. Maybe 2021 could be the year clinicians get back to basics and begin to support resilience in the people we see – firstly by showing them that we trust they have the capabilities.

Ardakani, E. M., Leboeuf-Yde, C., & Walker, B. F. (2019). Can We Trust the Literature on Risk Factors and Triggers for Low Back Pain? A Systematic Review of a Sample of Contemporary Literature. Pain Res Manag, 2019, 6959631. doi: 10.1155/2019/6959631

Dionne, C. E., Dunn, K. M., Croft, P. R., Nachemson, A. L., Buchbinder, R., Walker, B. F., . . . Von Korff, M. (2008). A consensus approach toward the standardization of back pain definitions for use in prevalence studies. Spine, 33(1), 95-103.

Franz, C., Wedderkopp, N., Jespersen, E., Rexen, C. T., & Leboeuf-Yde, C. (2014). Back pain in children surveyed with weekly text messages-a 2.5 year prospective school cohort study. Chiropractic & Manual Therapies, 22(1), 35.

Jones, G. T., & MacFarlane, G. J. (2005). Epidemiology of low back pain in children and adolescents. Archives of disease in childhood, 90(3), 312-316.

Mannion, A. F., Wieser, S., & Elfering, A. (2013). Association between beliefs and care-seeking behavior for low back pain. Spine, 38(12), 1016–1025

Becoming resilient

Rehabilitation professions are about helping people recover from illness to return to what matters in life. Sometimes as I read the myriad social media posts on ways to help people with pain, I wonder what kind of life rehabilitation professionals live themselves. Does our focus on what’s done during rehabilitation represent the way people live in everyday life?

I suspect that because rehabilitation has emerged from a medical model, much of our expectations and the framework for our work has remained in a “fix-it” or “there you go, good as new” mindset. A kind of short-term, out the door and back home lens, exacerbated by hospital adminstrators and policy developers needs to get people to leave hospital so as not to clog the beds.

Rehabilitation is often provided for people recovering from accidental injury, at least in NZ. These services consist of lots of physiotherapy – mainly exercise prescription; vocational rehabilitation – mainly time-frame expectations for the number of hours a person should be working, with adjustments made to tasks and some equipment; psychology – possibly cognitive behavioural approaches, but no specialist rehabilitation psychology yet in NZ.

The main problems with rehabilitation for persistent pain is that while provision for people receiving compensation is available (very little for those not receiving ACC), it’s often located away from where people live their lives. Even in the workplace, much vocational rehabilitation is undertaken by clinicians who are focused on helping the person return to this job only, not respond to future developments.

I think rehabilitation professionals could take a few leaves out of an approach promoted by Steven Hayes, Professor of Psychology at University of Nevada. In a recent paper he and Stefan Hofmann and Joseph Ciarrochi wrote, he proposes an “extended evolutionary meta-model” (EEMM) could provide unity to a process-based approach to therapy (Hayes, Hofmann & Ciarrochi, 2020). Much of the paper addresses concerns about the DSM V and its abysmal record of identifying underlying aetiologies for common mental health problems – and I would argue that similar concerns apply to problems inherent in attempting to treat pain. The aetiology of a pain problem probably has little in the way of influencing how a person responds to the experience.

What appeals about the EEMM is that it builds towards recognising that “defined processes of change are biopsychosocial functions of the
person in context, as distinguished from the procedures, interventions, or environmental changes that engage such functions.”

When the human genome was first mapped, I remember the enthusiasm had for finally, finally, we’d find “the genes for…” [name your disease].

Sad to say, behaviour isn’t as straightforward as that – as Hayes and colleages point out “behavior results from a diverse set of evolving dimensions and levels that include not only genes, but also many other processes. As a result, behavioral phenotypes that clearly involve genes are not necessarily genetic in a process of change sense.” Actually, many chronic diseases aren’t nearly as straightforward as we’d hoped (think type II diabetes, for example).

So what does an EEMM approach do for rehabilitation? I think we can begin to frame rehabilitation according to the foundations of evolution: to evolve, organisms need to have variability (otherwise the whole species dies out). To be resilient, and respond to what life throws at us, humans also need to have a wide repertoire of responses. This is one part of rehabilitation – to help people develop new response repertoires that fit their new circumstances. How well do we enable people to develop a broad repertoire of ways to do things?

Rehabilitation processes work to help people choose the most useful response for what’s needed in function: selection. Selection is a key part of evolution, because it allows the organism to choose a response from their repertoire to suit the circumstances. Translating to humans, given a context, people can choose a response that enables them to do what matters in their life. For example, knowing a range of ways to move an object from A to B means humans have learned to build the pyramids, and to construct Faberge jewelry. In rehabilitation, do we enable people to develop a range of responses, and do we help them work through a process of choosing well for a given context and purpose? Is a clinic the best place to learn how to choose well? Do our rehabilitation approaches incorporate motivational factors to engage people, so they can work out what’s important for their own life and values?

Retention is another process of evolution – people need to learn a range of responses, choose appropriately and know those responses well enough for them to be used when needed. Rehearsal, practice, habits and routines are the way humans have developed patterns that enable more brain space to be dedicated to choosing the best way to achieve a goal. Being able to effortlessly vary a response because it’s well-practiced is how elite sports athletes, professional dancers, musicians and performers do what they do despite the very different places they may need to do it. I think we possibly begin to do this, but often omit the patterning, the habitual practice in many different contexts that is needed to really retain variety.

Finally, evolutionary processes are about context. When the context changes, the most adaptive beings survive because they have a range of behavioural options to choose from, they know how to choose them, and the options are well-learned – and the choices they’ve made suit the new context. In rehabilitation, how well do we vary contextual demands? How often do we help people engage in what matters in their life in the person’s real world? Do we go walking across a range of different flooring surfaces, like the slippery shopping mall, the sandy beach, the rocky river-bank, the rugby field, the park? Do we mix it up with pace – fast and slow? Do we consider time of day? Do we think about the presence of sensory stimuli? Or the absence of sensory stimuli? Do we include contexts where there are lots of people – or very few, but they’re all focused on the one person? Do we think about the size, shape, fragility, wriggliness or preciousness of an object we’re hoping the person will lift?

To really help people flourish and respond to the future demands they’ll face, rehabilitation professionals might want to consider the EEMM, and begin to adopt a process-based approach to what we do. While some of the physical rehabilitation principles we use might not change, I think we could be far more creative and responsive to the processes involved in learning to adapt to altered circumstances. Maybe psychosocial flexibility is as important as muscle strength and control?

Hayes, S. C., Hofmann, S. G., & Ciarrochi, J. (2020). A process-based approach to psychological diagnosis and treatment:The conceptual and treatment utility of an extended evolutionary meta model. Clinical Psychology Review, 82. doi:10.1016/j.cpr.2020.101908

Springboard: Beginning to live life again

Springboard is a six week, 120 min once a week programme for people with pain. I developed this programme in the context of New Zealand’s Accident Compensation Corporation (ACC) community-based pain management services.

So, why use a group approach and what’s inside Springboard?

Pain can be such an isolating experience, and for many people, not only do friends and family not “get it” but neither do some of their health professionals! Living with pain, even for “just” a few months can lead to loneliness because most people don’t know what it is like to experience pain that doesn’t go away. Simply coming to a group where everyone else is in the same boat offers people a chance to be authentic about what it’s like. Connection with other people is so important – remember humans are a social species.

The second reason I love groups for this kind of work is that we get to share much more information and learning from one another than can be achieved in a one-to-one setting. As each person talks about their experience, others can relate “I’m the same”, or compare “I’m not like that”. Participants can share their wins and losses. They can contribute to help solve one and other’s problems. They can challenge one another in a way that health professionals who haven’t lived with pain can’t emulate.

If we look at Bandura’s social learning theory we can see that direct experience is the most powerful influence on self efficacy, and the second most powerful influence is vicarious learning. Being able to see how others approach the challenges of every day with pain gives participants a powerful learning tool.

What’s inside Springboard?

Springboard is based on ACT (Acceptance and Commitment Therapy) and also draws on motivational interviewing as a therapeutic stance. Rather than focusing on changing pain, the focus in Springboard is on learning ways to live life again, even in the presence of pain. In other words, Springboard is about beginning to be yourself again.

One of the most profound losses when a person experiences pain that doesn’t follow the “typical” trajectory is a loss of previously implicit assumptions. The body becomes more significant with pain – movements are attended to, daily activities are bounded by far more awareness than normal, assumptions about what a person can expect from him or herself are challenged. In turn, this awareness brings a loss of sense of “self”. Self concept is an idea about “what I can expect to do, be competent at, and what others believe I can do” – and when pain is present, these expectations are violated.

Springboard aims to help people take stock of their lives, decide what matters, and begin to move towards valued actions in the presence of pain. Opening up more of life than just attempting to get rid of pain and “go back to normal”.

The thing is, “normal” has gone – whether pain ultimately resolves or not. Because each person who has gone through this weird experience of pain that doesn’t obey the rules will remember what it was like when they had their pain, and the old certainty and belief that the body will do whatever it’s asked to do will have likely eroded.

So Springboard asks the questions: if pain was less of a problem for you, what would you be doing? What matters to you? How can we work together to get more of that – and in doing so, enrich your life, and the lives of those you care about.

Each session begins with a review of the “missions” all participants undertake in their own contexts. These are values-based actions that participants choose for themselves, and that will build towards being and doing what matters in life. In other words, making life bigger.

As participants review their progress, and share their successes – and challenges – all the other participants contribute ideas to solve the problems, celebrate the successes, encourage setting new actions and learn from one another.

Each of the six sessions has a focus.

  1. What do we know about pain? Sharing information each person has been given, and what sense they make of it. Generally working towards a common understanding of some of the mechanisms, some of the treatments people have tried, and getting perspective on how variable individual responses are to treatment. There is no single magic wand cure.
  2. How can we organise activity levels? AKA the “pacing” or activity management session. We share the various trajectories people have been on – the deactivation process, the boom and bust process, the push through until you gasp approach, the gradual increase approach, and the consistency or quota approach. Rather than telling people which is “the best” we look at the good and the not-so-good about each, using participant’s own examples. That way we can help people weigh up their options for the various contexts in which they live.
  3. Dealing with sticky thoughts and feelings. This is the “ACT” session – discussing cognitive defusion strategies, noticing, willingness, perspective taking, and finding wiggle room. Each session begins with a mindfulness “arrival” moment, so participants are familiar by this time with noticing that the mind likes to dictate. Participants begin to use “Choice point” as a creative way to notice what their mind is telling them, and choose an action to align with what matters to them in that context.
  4. Sleep is always a hot topic! In this session we discuss all manner of sleep strategies, and how/why sleep is such a problem and so important for people with pain. Our solutions are diverse – everyone has something to contribute – and again, we look at the good and not-so-good of each option.
  5. Who’s on your team? In this session, participants explore the many people they’ve interacted with because of their pain, all the people they’ve told their story to. We examine the various contributions these people make, and begin to look at how better to communicate in an authentic, respectful and “straight-up” way. Some participants bring family to this session as we build a list of who is on the team, and help the person with pain be the captain.
  6. Flare-ups, set-backs and pre-planning. The final session is about when things go wrong. Identifying things that disrupt newly-developed skills and habits, whether these are pain flare-ups, pain settling (yet, it’s a thing that can trip people up!), holiday routines, returning to work, new assessments – all the things that life holds! Participants work on drawing up their own pain management plan (written down so it can be pinned on the fridge!), and on a set-back plan or “can cope” card.

The real grunt work of this programme lies in the home-based missions each participant does. It’s in doing new things, taking small steps in a different direction, stopping to notice before acting, defusing and giving a moment of space before choosing what to do – these actions are reviewed at the beginning of every session and really form the core of what Springboard offers.

Over the next six weeks I’m putting the facilitator training for Springboard online. This will make the training available for more people, both in New Zealand and elsewhere. Keep watching out because I’ll make an early bird announcement very soon!

What do occupational therapists add to pain management?

I’ve struggled with professional identity from time to time, but after completing my PhD thesis looking at how people live well with pain, I’ve developed a new understanding of how occupational therapists add value in this area of practice.

Occupational therapists joke that “no-one knows what an occupational therapist does” – and sadly, that’s true. It’s not because what we do isn’t important, it’s because our view of people and the way we work with people differs from most health professions. Occupational therapists don’t treat disease per se, we work with people’s function and participation, with a person’s illness experience. We don’t fit inside a biomedical, disease-oriented model of humans.

This means an occupational therapist works with people using a process-oriented approach. This approach begins by understanding what a person values, what matters in their life, and how the person’s life context influences their participation. Occupational therapists are concerned with the daily minutiae of life: the way you clean your teeth, how you get to work, what you do for fun, the roles you undertake, the daily routine you follow, the things that make your life your own – not a facsimile of someone else’s.

In pain management/rehabilitation, occupational therapists are there to help people resume, or begin, a life that looks like their own. To integrate strategies into daily routines and habits. To contextualise the strategies other professionals introduce. We’re the professional who talks about the timing of exercise/movement practice – how to fit exercises into each day without compromising other important routines. The details of when and where and how exercises are done in the long term, for life, in life. We encourage people to look beyond the simple 3 x 10 and into the kinds of movement opportunities that hold meaning beyond the “it will help your pain”.

Occupational therapists translate what happens in clinic settings into the real, messy, chaotic and unpredictable worlds of the people we serve. When someone is learning to develop self compassion, occupational therapists work out what this might look like in the context of being a good father, or an efficient employee. When someone is developing effective communication skills, occupational therapists are there to review when, where and how these skills are brought into play with the kids, the uncle, the neighbour, the colleague. When someone needs to learn to down-regulate a sensitive nervous system, occupational therapists are there to help assess each setting, noticing the sensory load of a situation, problem-solving ways to remain engaged in what’s important without withdrawing or overloading.

When someone’s afraid of a movement, occupational therapists go into the real world to help that person begin to do that activity – our skills are there to titrate the level of difficulty not just around biomechanical demands, but also social, interpersonal, sensory, and cognitive loads. Ever wondered why a person can manage something really well in the clinic – but can’t do the groceries, go to a restaurant, stay with friends overnight, anywhere where the demands are different? Occupational therapists can help figure out why.

For those that don’t know, my profession has been established since the days of 1793, when Phillipe Pinel began what was then called “moral treatment and occupation”, as an approach to treating people with mental illness. In the US, a National Society for the Promotion of Occupational Therapy (NSPOT) was founded in 1917, and continued through the 1920’s and 1930’s until the Great Depression. Occupational therapy became more closely aligned with medicine as part of a rehabilitation approach to recovery with wounded soldiers, those with TB (in New Zealand especially), and those with chronic diseases. In fact, occupational therapy was a registered and protected health profession in NZ since 1945 (before psychology).

It was during the 1980’s and 1990’s that the profession began questioning the medical model – and during my training in the early 1980’s, Engel’s biopsychosocial model was promoted as an over-arching approach to viewing people. So for occupational therapists, this is our practice philosophy: to look at the whole person in context.

Occupational therapists are fully trained across both physical and mental health. Our profession is one of the very few that has retained this “whole person” model of health from its inception. The value of doing, being and becoming is at the centre of practice. The appreciation that people live in a physical and social context, and that people have biopsychosocial, cultural and spiritual aspects is central to practice.

Pain is a human experience that spans the biological, the psychological, the social, the spiritual. Pain can influence all of life. When life has lost meaning because it doesn’t look like the life a person had before pain – this is where occupational therapists practice the art and science of our work.

On values, culture and health

This week is Te Wiki o te Maori – and the theme is Kia Kaha te Reo Maori. For those readers not familiar with te reo, kia kaha translates to “be strong.” It’s a word people from Otautahi (Christchurch) have used a lot since 2010 and the first of the many events that have shaken (literally) our world since then. Te Wiki o te Maori is a week dedicated to celebrating and strengthening the use of Maori language in New Zealand.

While the week celebrates the language of Aotearoa, it also helps us tangata tiriti, or people of the Treaty of Waitangi, remember that we have a place in this whenua (land). It helps me remember the values that those of us living in Aotearoa hold dear.

The thing about culture is that many of us don’t even recognise that we have a culture. Cultures are the assumptions, practices, values, beliefs, habits, ways of being that we have absorbed without knowing we have (see here for a nice description of culture). We all live within more than one culture, irrespective of the colour of our skin – culture is not synonymous with ethnicity or “race.”

This year “Black lives matter” has erupted onto the consciousness of thousands of people around the world. It’s as if, for many people, the whole notion of equality vs equity has never before been a thing. And it’s this blindness to social differences that I want to discuss today.

Recently I’ve been talking about the way exercise is discussed amongst health professionals. I pointed out that not everyone enjoys the gym, and that 3 x 10 sets of exercises is possibly the best way to kill anyone’s enthusiasm for movement. I also argued the aim of rehabilitation is to give the person their own life back – not some “living by numbers” recipe made up of lists, targets and goals.

Both those posts met with a certain amount of enthusiasm, and an equal degree of push-back. Push-back comes from a sense of certainty that of course exercise is a thing we all should do for our health. Because, of course, our health is the thing we should most value.

Or is it? Health professionals enter their professions for many reasons, but one often unacknowledged one is that we value health. We might not state it in those words, we might couch it in terms of “I want to help people”, “I like to give to my community” or even “I have a calling” (Witter, Wurie, Namakula, Mashange, Chirwa & Alonso-Garbayo, 2018), but during our training, we are encultured into valuing health more highly than, perhaps, we would have.

We are also privileged as health professionals. Witter and colleagues also point out that people become health professionals for financial reasons – job stability, respect, status in a family or community. Some health professionals can train for free, while most will recoup the cost of education during their working life. We are privileged because we have education. We have work. We have respect, mana, so what we say carries weight.

When I consider this construct we call health, I bring to mind the WHO definition which is “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” (Preamble to the Constitution of WHO as adopted by the International Health Conference, New York, 19 June – 22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of WHO, no. 2, p. 100) and entered into force on 7 April 1948. The definition has not been amended since 1948). Health is more than the absence of disease or infirmity. That bears repeating. Health, in tangata whenua terms, is viewed as wellbeing in four areas: taha tinana (physical wellbeing), taha hinengaro (mental wellbeing), taha wairua (spiritual wellbeing) and taha whanau (family wellbeing).

I bring to mind a person I know. Let’s call her Allie. She is five years older than me. She is overweight, smokes tobacco and has COPD. She left school at 14 years old, and has worked in minimum wage jobs her whole working life. She became pregnant at 16 years old, and raised her only child as a single parent. He has had a mixed and disrupted life, spending many years in prison with a methamphetamine addiction and multiple convictions for burglary. He has a 14 year old daughter who now lives with her grandmother, Allie.

Now Allie has seen a lot of health professionals. Almost all of them have talked to her about her smoking. They’ve also talked to her about diet and exercise. None of this talk has helped her kick the smoking habit, and exercise? What of it? As she said to me once, “tell me when I can go exercise after I leave home at 6.00am, go to one job, then get back from the second job at 7.30pm?”

What matters to Allie? He tangata, he tangata, he tangata. The most important thing in the world to her is keeping her grand-daughter safe. Allie has spent countless hours trying to give her grand-daughter the security of a settled home, a place where there are rules and boundaries, and a place where there is warmth, food, a bed to sleep in, and people who care. And she’s done this with minimal support from her son, her grand-daughter’s mother, and the NZ social welfare system.

So as health professionals, when we begin to judge or critique people for not being “compliant”, for not being “motivated”, for failing to go to the gym, for not stopping smoking – we need to stop for a minute. Allie has tried countless times, believe me – but has anyone asked her what she gains from smoking? It’s her stress relief. In the absence of alternatives, it’s her reliable stand-by. The only way we’re likely to influence Allie is if we view her life through her eyes, and work with what she values.

And when we prescribe what we think is Most Important because we think the person in front of us values what we value – we’re speaking from a place of privilege, and through a lens that reflects our own priorities. And we could be completely oblivious to this. Such is the nature of privilege. Let’s take a moment to appreciate that the people we serve want to return to their own lives, valuing what they value, with their own priorities, and their own perspectives. Kia kaha, arohanui.

Witter, S., Wurie, H., Namakula, J., Mashange, W., Chirwa, Y., & Alonso‐Garbayo, A. (2018). Why do people become health workers? A nalysis from life histories in 4 post‐conflict and post‐crisis countries. The International journal of health planning and management, 33(2), 449-459.

Is exercise the new snake oil? or just a dirty word?

If you haven’t heard about the health benefits of exercise in the last 10 years or longer, then you’ve probably been a hermit! Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants – or the amazing White Cross Electric Vibrator!

Well perhaps there’s a little more research supporting claims for exercise… but are those claims being inflated just a little? When it comes to pain, particularly persistent pain, perhaps so…

But before I launch into some of the problems with exercise research, I have another problem with “exercise” – and that’s the word itself.

According to Wikipedia (and no, it’s not an academic reference!!) “Exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness.” Winter and Fowler (2009) in an interesting paper looking at definitions of exercise, found that “exercise” and “physical activity” are essentially the same and differ only in terms of motivation/intent, finally arriving at this definition: “A potential disruption to homeostasis by muscle activity that is either exclusively or in combination, concentric, isometric or eccentric.” Whew! Glad we’ve got this sorted.

But given the sticky nature of our minds, and that very few of us are inclined to spend hours debating the technical details, the word “exercise” has picked up quite a few other meanings. For me it conjures up images of sweaty, lycra-clad blokes grunting in front of enormous mirrors while they heave on lumps of metal to the pumping rhythm of loud music (and the eyes that follow my every move). It also raises the spectre of school sports where I was inevitably the last person chosen for any sports team, the last to come in after every run, the person who got hit in the face by the ball, who got her thumb smacked by the hockey stick the week before my piano exams…

I’m not alone in my distaste for “exercise”. Qualitative researchers have often investigated how people with pain view exercise: “I get the comments that “It is not dangerous” and that “you are not going to be worse.” I do not believe it is dangerous … but actually it happens that I become worse after .… I know that the pain will increase. And they … talk to me about pain that is not like my pain.” (Karlsson, Gerdle, Takala, Andersson & Larsson, 2018)

Boutevillain, Dupeyron, Rouch, Riuchard & Coudeyre (2017) in another qualitative study, found that people with low back pain firstly identified that pain intensity interfered “any minimal physical activity, standing still in one spot, is torture” (line 1683); “if my back hurts, I don’t do any activity that’s for sure, I am not going to the garden and do some digging, that is out of the question! I have two children, if I am in pain and they want to play, my back hurts and I can’t play with them. My back hurts I can’t do it. It’s not that I don’t want to it is just that I cannot. I am unable to” (line 29). In turn, motivation for exercise was reduced “I don’t have any desire to exercise. A lack of motivation, even apprehension” (line 390); “there needs to be this spark to get motivated, and I just don’t have it” (line 1335). Along with the lack of perceived benefits for some: “Sometimes I try to exercise and then I’m in pain, looking back had I known it would hurt I would probably not have done it” (line 2037) “It can be harmful, I give you an example: I have a colleague with low back problems, similar to mine, and she loves to take step classes, but each time she exercises too much, she is in pain but continues. I think she should stop, it is quite dangerous for her” (line 378).

A systematic review by Slade, Patel, Underwood and Keating (2014) found that “Individuals were more likely to engage within programs that were fun and had variety than ones that were boring, unchallenging, or onerous because they disrupted daily activities.” They added that “Difficulties with exercise adherence and not seeing benefits of exercise were frequently attributed to lack of time and fit into daily life.” Quotes drawn from the studies included in this review show that lack of confidence, negative experiences at the time, and poor “fit” between the exercises selected and individual preferences influence whether exercise was carried out consistently.

At the same time as these negative views, many participants in qualitative studies report that they use “movement” as a key strategy for their daily management. Whether movement looked like “exercise” as prescribed by PTs or trainers is a little less clear – people use the word “exercise” to mean many different things, hence Karlsson and colleagues (2018) combined the term “physical activity and exercise”.

Now one very important point about exercise, and one that’s rarely mentioned, is how little exercise actually reduces pain – and disability. A systematic review of systematic reviews from the Cochrane collaboration found that most studies included people with mild-to-moderate pain (less than 30/100 on a VAS) but the results showed pain reduction of around 10mm on a 0 – 100mm scale. In terms of physical function, significant improvements were identified but these were small to moderate in size.

And let’s not talk about the quality of those studies! Sadly, methodological problems plague studies into exercise, particularly sample size. Most studies are quite small, which can lead to over-estimating the benefits, while biases associated with randomisation, blinding and attrition rate/drop-outs, adherence and adverse effects.

Before anyone starts getting crabby about this blog post, here are my key points (and why I’ve taken this topic on!):

  1. Over-stating the effects of exercise won’t win you friends. It creates an atmosphere where those who don’t obtain pain reduction can feel pretty badly about it. Let’s be honest that effects on pain reduction and disability are not all that wonderful. There are other reasons to move!
  2. Exercise and physical activity can be done in a myriad of wonderful ways, research studies use what’s measurable and controllable – but chasing a puppy at the beach, dancing the salsa, cycling to work, vacuuming the house, three hours of gardening and walking around the shopping mall are all movement opportunities up for grabs. Don’t resort to boring stuff! Get creative (need help with that? Talk to your occupational therapists!).
  3. The reasons for doing exercise are enormously variable. I move because I love the feeling of my body in rhythm with the music, the wrench of those weeds as they get ripped from my garden, the stretch of my stride as I walk across the park, the ridiculousness of my dog hurtling after a ball… And because I am a total fidget and always have been. Exercise might be “corrective”, to increase cardiovascular fitness, because it’s part of someone’s self-concept, to gain confidence for everyday activities, to beat a record or as part of being a good role model. Whatever the reason, tapping into that is more important than the form of the exercise.
  4. Without some carryover into daily life (unless the exercise is intrinsically pleasurable), exercise is a waste of time. So if you’re not enjoying the 3 sets of 10 you’ve been given (or you’ve prescribed to someone), think about how it might translate into everyday life. It might be time to change the narrative about movement away from repetitive, boring exercises “for the good of your heart/diabetes/back” and towards whatever larger, values-based orientation switches the “on” switch for this person. And if you’re the person – find some movement options that you like. Exercise snacks through the day. Jiggles to the music (boogie down). Gardening. Swimming. Flying a kite. Don’t be limited by what is the current fashion for lycra and sweaty people lifting heavy things with that loud music pumping in the background.

Boutevillain, L., Dupeyron, A., Rouch, C., Richard, E., & Coudeyre, E. (2017). Facilitators and barriers to physical activity in people with chronic low back pain: A qualitative study. PLoS One, 12(7), e0179826. doi: 10.1371/journal.pone.0179826

Edward M. Winter & Neil Fowler (2009) Exercise defined and quantified
according to the Système International d’Unités, Journal of Sports Sciences, 27:5, 447-460, DOI: 10.1080/02640410802658461

Geneen, L. J., Moore, R. A., Clarke, C., Martin, D., Colvin, L. A., & Smith, B. H. (2017). Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev, 4, CD011279. doi: 10.1002/14651858.CD011279.pub3

Karlsson, L., Gerdle, B., Takala, E. P., Andersson, G., & Larsson, B. (2018). Experiences and attitudes about physical activity and exercise in patients with chronic pain: a qualitative interview study. J Pain Res, 11, 133-144. doi: 10.2147/JPR.S149826

5 Things I Learned from Lock-down

As New Zealand emerges from the most severe lock-down levels to greater freedom (but still not back to life as usual) I’ve been reflecting on what I’ve learned – no, not a new language, new baking skills, or sudden competence in using R (see here for a great tutorial), but things about myself. Odd though it may seem, I’m leaving lock-down with a sense of wistfulness. You see, the time from the end of March to end of April has been a lovely time for me.

I’m lucky, I have a good job, my work hasn’t changed much (well, a bit), my family are safe, I live close to the beach and a park, and the weather has been kind. It’s autumn in Christchurch, and it’s been mainly fine. The bird life has been flourishing. The foot traffic past my house has been families – Mum, Dad, kids on bikes and in pushchairs. Apart from the occasional drop-kick lighting fireworks or playing the Zombie Apocalypse Siren, and hammering from 7.00am to 11.30pm, our neighbourhood has been peaceful. And yet I know so many people in New Zealand and around the globe who are really struggling. Strange times indeed. So what have I learned?

  1. Solitude is not the same as loneliness. Solitude is being alone and being OK with it. Loneliness is being alone when you don’t want to be. Being with my own thoughts, listening to the murmuring of sounds around me, letting my mind wander then gently bringing it back to focus is a pleasure, almost an indulgence. Having headspace to let what passes through my mind just pass by, without music or talking or anything interrupting my musing is a pleasure. Better still: being with someone who also appreciates being together in silence. I’ve learned to love solitude.
  2. Some kids will remember this time with gratitude. I’ve watched whole families walking together, making huts from driftwood, spotting the teddies in the windows, making low-tech memories of time being together. I have a fairy door (and a fairy) at my gate, and watching the little kids search for the fairy (who flies from tree to tree each day!) is such a joy. I’ve seen Mums and Dads out cycling with their kids then heading home to do the DIY together. What a treasure! I’ve learned (again) that families need time being families.
  3. Some things stay the same – especially if you live with pain. Even though my days have been peaceful, my pain has not. With changes to my routine, the weather, sleep, and world events playing on my mind, my life with fibromyalgia still needs managing. I’ve had aches in places I don’t usually have aches, and the things I do to live alongside my pain still need doing. For me these things are: making sure I carry on with mindfulness (I savour those moments when I can be with my thoughts but not part of them), go for my walk for headspace and body movement, keep my sleep/wake routine reasonably consistent, and eat normally (hah! there’s chocolate and alcohol and crisps. I may have slipped up a little there…). I’ve learned that pain management is really life management.
  4. Comparing myself with others is a waste of time. Yes, there are people out there learning new things, self-improving all over the place, doing their on-line socialising (and CPD), being creative and producing a lot. Good for them! I admire their achievements, and I’ve even contributed to a few of those online Zoom talks. Meanwhile, I thought I’d have been truly productive in the studio making loads of silver jewelry (those of you who don’t know – that’s my ‘hobby’ that seems to have taken over my photography, painting, sewing and everything else!). I’ve created a few pieces – but when I caught myself feeling pressured to come up with a “COVID19 Collection” I realised that this pressure wasn’t me. It was my mind being competitive and wanting to prove something to others. The need to belong can lead me to also want to be acknowledged as Something Special. Better than. As good as. Because, of course, underneath that is “I’m not good enough as I am”. So I decided to let that rope go. I don’t have to compete. There isn’t a prize for She Who Produces The Most because in the end, life is a process not a goal. I’ve learned (again) that comparisons are one way my mind beats up on me, and my mind doesn’t know everything.
  5. Resilient people are adaptable people. Resilience is a word many people in Christchurch, NZ, are well and truly over. Since 2010, and the 10,000 earthquakes since, plus the Port Hills fire, and the terror attack on Al Noor Mosque, people in Christchurch have been challenged more than many in our wee country. Resilience doesn’t mean we’re unchanged. Resilience means we change with circumstances and we develop new ways of being, ways of expressing who we are and what matters to us. I sometimes think people believe resilience means “Oh you’ve bounced back and life goes on as it was” but for me the events since 2010 have had a profound effect on my life. I can’t walk through my city without seeing earthquake-wrought changes. I see bumper stickers saying “they are us” and “kia kaha“. I walk past the memorial wall Oi Manawa when I head in to work. The new streetscapes, city buildings, ongoing roadworks and repairs – all part of the way my city has changed. That underground subversive element in Christchurch has touched so much of our lives. Resilient people have found ways to express who they are despite the enormous impact of events over the past 10 years. I’ve learned that holding on to what I value while finding new ways to express these has given me freedom and growth – but I’ve had to let go of the form, the habitual, the routines that used to frame them. It’s painful. It’s tiring. It’s real and raw and hard work.

How does all this fit into a blog about pain? If pain doesn’t challenge clinicians and people experiencing it, I’ve wasted the last 30-odd years of my clinical career, not to mention my hours of social media involvement!

Change, as a clinician, can be tough – letting go of the form of what we offer (because … science) while holding on to why we ever started working as clinicians requires flexibility.

And solitude – to reflect on what it is we really want. We do it for families, those closest to our hearts (our own families, and others), so people can be who they really are.

Comparing ourselves with others leads to a popularity contest, and the self-management approach to pain is most definitely not a popular meme. I am not part of the Instagram/Twitter/TikTok/whatever meme culture. I don’t do short, snappy sound bites. There are, as far as I can see, no short-cuts or quick fixes for learning to live well with pain. There are only connections between people who care, who are willing to be vulnerable, who will let go of some things in order to take on new things in the pursuit of what matters.

This is what I’ve learned from Lock-down.

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.

Why are there not more occupational therapists in pain rehabilitation?

A question I’ve asked myself many times! As a small profession with a long history (as long as physiotherapy, TBH), it does seem odd that there are many, many pain rehabilitation services where never an occupational therapist has darkened the door.

Some of the reasons lie within the profession: in general, occupational therapists are busy being clinicians and have little time for research. In New Zealand, few occupational therapists pursue higher degrees, and many avoid statistical analyses, experimental design, randomised controlled studies. In fact, some occupational therapists have argued that the tailored approach used by therapists means randomised controlled trials are impossible – our interventions too complex, too individualised.

And it is difficult to describe occupational therapy in the kind of broad terms used to describe physiotherapy (movement), psychology (mind, emotions, behaviour), medicine or nursing. Occupational therapists often deal with the everyday. Things like organising a day or a week, getting a good night’s sleep, returning to work, managing household activities. Not sexy things with technical names!

So… what does a good occupational therapist offer in pain rehabilitation? These are only some of the things I’ve contributed over the years:

  • graded exposure in daily life contexts like the shopping mall, supermarket, walking at the beach, fishing, catching a bus, driving
  • self regulation using biofeedback, hypnosis, progressive muscle relaxation in daily life contexts like getting off to sleep, at work in between clients, while doing the grocery shopping, while driving
  • effective communication with partners, children, employers, co-workers, health professionals in daily life contexts
  • guided discovery of factors that increase and reduce pain in daily life contexts like the end of a working day, over the weekend, at the rugby, in the pub, on your own, in a crowd, at home
  • information on proposed neurobiological mechanisms as they influence pain and doing/participating in daily life contexts, things like attention capture, distraction, memory, emotions, stress, excitement
  • values clarification about what is important to a person’s sense of who they are in their daily life
  • progressive meaningful movement in daily life contexts
  • goal setting, planning, managing and progressing overall activity levels in daily life
  • positive, pleasurable activities to boost mood, reduce anxiety and live a life more like the person wants

What characterises all that I offer? It’s context. One of the major challenges in all our pain rehabilitation is that people feel safe when in safe surroundings, with people who elicit feelings of safety. When things are predictable – like in a clinic setting – and when clinicians are present, people feel OK to do things they simply can’t do (or won’t do) elsewhere.

Life is complex. Contexts are highly variable, often chaotic, multiple demands on attention, priorities, values – and when a skill is developed in a controlled environment, like a clinic or office, it’s nothing like the real world. This, folks, is the unique contribution of a good occupational therapist.

Someone posted an image once, on the one side was physical therapy. On the other was psychology. And the question was posed: who bridges the gap between these two professions? I say definitively that this is the occupational therapy space. We are knowledge translators. We are the bridge between clinic and daily life. It is our domain, the entire specialty area of this profession. And it has been since the professions’ inception, way back in the early 1900s.

There are occupational therapists who let us down. These are the therapists who focus exclusively on occupational participation without factoring in that we are also a rehabilitation profession. These occupational therapists provide equipment to people who are sore: the new bed, the shower stool and rails, the kitchen stool and trolley, the bed and chair raisers. Now there may be good reason for installing these gadgets – in the short term. They might keep someone safe in their environment so they can do what’s important. AT the same time they can, and do, reinforce the idea that this person cannot do, and certainly cannot change. While installing these things can mean a person is able to do – the person also learns to avoid doing these movements. This is such an important concept in pain rehabilitation – because progressively working towards being able to manage normal activities without aids is what we’re aiming for! An occupational therapist installing these things without reviewing and supporting the person to no longer need these things is just like a physiotherapist offering a person a back brace or splint and never reviewing whether it’s needed.

Why is it difficult to acknowledge occupational therapy’s contributions? Partly our rejection of a biomedical model based on diagnosing disease. Occupational therapists are about the person’s illness experience, our model is wholistic, biopsychosocial, integrative. It’s hard to articulate our contributions without using a lot of words! Or making it seem so dumbed down that people view the exterior actions (cleaning teeth, having a shower) without recognising the myriad contributing factors that influence whether this action is carried out successfully.

Occupational therapists have relied on qualitative research to examine the lived experience of people dealing with persistent pain. Rather than pointing to randomised controlled trials of broad concepts like “exercise”, we’ve tended to describe the individual and unique experiences of people as they regain their sense of self. Not something easily measured like range of movement or cardiovascular fitness, or even simple measures of disability and self efficacy. Peek behind these descriptions you’ll find synthesised strategies that integrate values, committed actions, sense of self, cognitive defusion, behavioural approaches – messy things that aren’t readily translated into simple cause and effect experiments. Multifactorial approaches that recognise that life is a contextual experience.

I contend that one of the major failings in pain rehabilitation is helping people reclaim their sense of self again. Self concept is ignored in favour of changing a person from a couch spud to a gym attender. Even psychologists can forget that when instilling new strategies, the person in front of them has to learn to integrate these new things into their world – and that means adjusting their sense of who they are. That’s the hidden work people living with persistent pain have to do, rarely supported. And yet it’s the thing people most want to resolve when they’re dealing with this experience. Who am I? Can I be me again? If I can’t be the old me, can I at least get something of what was important to me back again?

What I’d like to see are more occupational therapists being confident about what our profession offers, being willing to step up and be the resource we know is needed. We don’t need to be defensive about this – but we do need to be sure about the validity and relevance of why our contribution is so important. I think the results from research showing how short-lived positive results of pain rehabilitation really are speak for themselves. Maybe the missing link is knowledge translation into daily life contexts?

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.