persistent pain

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

Pain may not be what a person fears most


We all have typical ways of going about our daily routines and solving problems. Mostly these work – until we encounter a situation where they don’t. If we’re flexible enough, we’ll figure out a way to change what we do in that instance, and this will become another strategy to draw on, and might even become another habit that works – until it doesn’t.

In pain rehabilitation, there are certain patterns of activity that have received a lot of research attention. Activity avoidance is one of them, while task persistence is given rather less air time (though it’s emerging as an intriguing area to study (Hasenbring, Andrews & Ebenbichler, 2020)). But perhaps what we’ve looked into less are aspects of adjusting to life with pain that raise uncomfortable thoughts and feelings. These in turn make it more difficult for a person to change how they go about daily life.

Some examples I’ve heard from people I’ve worked with:

  • I need to keep pushing through the day because I’m the boss, and a hands-on manager. If I stop being hands-on, there’s nobody to pick up the slack. Things won’t get done.
  • I’m a mum, and I can’t let my children go off to school without them having had breakfast, and making their lunches, and there’s all the parent-teacher events. I can’t just stop.
  • When I left the lawn half-done, my partner jumped in and did it for me, then got really angry with me and I’m not doing that again!
  • I was a professional athlete. Going to the gym is horrible. I’m a failure – I’m lifting these tiny weights and I used to lift massive ones.
  • I’m going back to work on this graded programme, but I can’t fit my gym programme in, and that’s the only way I’m going to fix my core strength.

These situations are pretty common. The clash between “pain management” and the reality of daily life. Daily life is messy, and there are social factors at play, there’s the unpredictable, the real fear of criticism or loss of a job or someone not taking up the slack while the person makes changes in how he or she does life. It’s far easier to prescribe exercises in a controlled place, to track progress by weights, repetitions and cardiovascular fitness or range of movement.

Doing self management, things like pacing or setting time aside for movement, or spending time in meditation or asking someone to help: these are easy in the short-term, right? But not quite as easy if you think of these things needing to happen for life. In fact, some people with pain begin to feel like this new life isn’t really a life at all! Where’s the spontaneity?

When we begin drawing on Acceptance and Commitment Therapy (ACT) a common error is thinking the “acceptance” part is only about accepting pain, and stopping treatment, ie let’s focus on being willing to experience pain in the pursuit of what’s important. And there’s good evidence supporting the process of doing valued activities as one of the key processes in ACT, as well as being a key outcome (Vowles, Sowden, Hickman & Ashworth, 2019). All the occupational therapists say “preach it!” because, of course, this is what occupational therapy as a profession is based on!

So what else needs to be the focus if we’re using ACT in persistent pain management? As you can see from the client examples I’ve given, there are more effects from pain and self-management strategies than just being willing to experience the ouch. People hold fused beliefs about what kind of a person they are: the reliable worker; the dutiful parent; the responsible boss; the super-athlete; the compliant patient. The strategies people use to cope with persistent pain may impinge on ideas a person holds about themselves.

Furthermore, things clinicians tell people – like “your exercises will reduce your pain”, or “you must learn to fire this muscle to help stabilise”, or “meditation needs to be done this way” – can also become fused ideas. A lot like wearing a splint for years “because the therapist said I must”, or using a particular chair “because the therapist said it was the best for me.”

Any time we begin introducing new ways of doing things, we’re likely to encounter people who will find it hard to see why our perfectly reasonable solution won’t fit them in their circumstances. Consequently we can either try hard to persuade the person to do it (creating pliance), or we can decide the person isn’t cooperative and give up. I think there’s a third way: using ACT we can examine the usefulness or workability of the approach preferred by the person, and we can do the same for the new approach. By looking at the good and not-so-good in each option, we can also begin to explore the fused thoughts and emotions, experiential avoidance (what is it the person is unwilling to experience?), values, sense of self (is it me, or a story about me?) – indeed, all the ACT processes are likely to come into play.

What we need to do then will depend on your clinical orientation and the person. If the person judges that what they’re currently doing is working for them – our job is done. We can “leave the door open” for them by indicating that there are alternative strategies the person might want to experiment with in the future, but pushing against a person’s own belief that they’re doing fine just isn’t aligned with ACT.

If the person agrees that no, their current approach isn’t working – then we can begin exploring what’s going on. Occupational therapists might begin with daily activities, perhaps identifying what’s important about them, and then experimenting with (or playing with!) different ways of doing them. As an occupational therapist, I’m likely to want to understand is showing up for the person, maybe draw on other important values to help them to begin to use a coping strategy. The cool thing about ACT is that while committed action must be 100% we can adjust the demands of that action to the level of confidence a person has.

For example, if someone really has strongly fused ideas that “everything needs to be done for the children before they go to school”, we might begin by laying out the children’s lunches but asking the children to put them into their bags. Two things might be going on in this case: one might be about loosening the fused idea that “good mothers do everything for their children” while simultaneously helping the person develop skills to communicate effectively with their children – allowing the children to experience what happens if they forget! (Kids have ways of finding food, believe me)

We could be building on the mum’s value of raising independent children, and drawing on her skills of mindfulness and being in the present moment. We’d need to check in with her willingness to do this: is she 100% willing to let her kids go to school without physically putting their lunches into their bags? If she’s not, we might try making the task a little less challenging. This might look like allowing the children not to brush their hair before going to school, or putting the lunches beside the bags but not inside them. Whatever we do we’re gently allowing her to feel the shiver of anxiety that she hasn’t “done everything for the children” while also using another value “I’m raising independent children” to help her follow through.

In terms of where this example might go, if one of the fused thoughts is that “I feel guilty if I don’t do everything for my kids”, this is likely playing out in other parts of this person’s life. By helping her be willing to experience that anxiety in the pursuit of supporting her children to become independent, she’s developing more space between her thoughts and what she decides to do with them. She’s rehearsing a process where she draws on strengths (values, mindfulness, cognitive defusion) to help her commit to doing something that’s not easy. And doing this in one part of her life begins to open the possibilities for doing this in other parts of her life.

Pain rehabilitation and management is often not so much about dealing with the pain and effects of pain on life, but on life and how we live it. Life is more than whether we’re pain-free, fit or happy, it’s about moving onward in the direction of what’s important to us.

Hasenbring, M. I., Andrews, N. E., & Ebenbichler, G. (2020). Overactivity in Chronic Pain, the Role of Pain-related Endurance and Neuromuscular Activity: An Interdisciplinary, Narrative Review. The Clinical Journal of Pain, 36(3), 162-171.

Vowles, K. E., Sowden, G., Hickman, J., & Ashworth, J. (2019). An analysis of within-treatment change trajectories in valued activity in relation to treatment outcomes following interdisciplinary Acceptance and Commitment Therapy for adults with chronic pain. Behav Res Ther, 115, 46-54. doi: 10.1016/j.brat.2018.10.012

That elephant in the room thing


This weekend I was incredibly fortunate to speak at Le Pub Scientifique (the next one is the super intelligent Tasha Stanton!) about one part of our pain conversation that’s absent: how do we have a conversation about when pain persists and doesn’t respond to any treatments?

I still don’t have any research to show how we might broach this topic in a way that respects the person with pain, acknowledges just how poorly our treatments do, and provides a framework for us to collaborate. It’s like this big bogey sitting in our clinics that we pretend isn’t there.

Why do we need to have this conversation?

Well, one reason is that our treatments are pretty poor and by ignoring this reality we’re sitting there with our hands over our ears going “lalalalala” as if by NOT talking about it, it doesn’t happen.

Another is that people living with pain are put through the most awful process of being offered something (hope!), waiting to get that something (waiting, waiting, waiting…life on hold…), getting it (ooh! exciting!), waiting for it to work (waiting, waiting, waiting…life on hold…), then finding it doesn’t help (despair!). Rinse and repeat. The time spent waiting alone is such an incredible waste.

As a result of us not being brave enough to talk about it, people with pain are often thought of as The Problem. They get blamed for not responding. Blamed by family, friends, other health professionals and funding agencies, insurers and case managers, and worst of all: their own minds.

In 2007 I hit my head and sustained a concussion. For 18 months I wasn’t working full time because I’d need to come home and sleep for at least an hour. Even though I knew that my symptoms were real, and that it can take time to recover from concussion, I spent hours worrying that I was “exaggerating”, “taking things too hard”, “not working hard enough”, “not motivated enough.” Believe me, these thoughts do not help anyone, and they delayed my recovery by pushing me towards a depressive episode.

Imagine if you’re a person with pain that doesn’t respond and instead of being given consistent messages about it as I was with my concussion, you’re being told “Treatment X might be a good option”, or “Have you tried Y?” or “Maybe another investigation might help us sort it out?”

How might that erode your sense of self, your confidence in your own experience?

Now I’m not suggesting we say to people “Guess what, your pain is going to go on forever” – that would be horrible, uncaring and unfeeling.

This isn’t the same as pretending that pain isn’t there, gritting teeth and “just getting on with it”. This isn’t about being resigned to a life of suffering.

What I am suggesting is that we help people to become less afraid of their pain, and to begin to start adding life into their life. That by taking pain into account we can begin to build patterns of activity that move us towards what we value – and I doubt that many of us value waiting for the next healthcare appointment. It also doesn’t mean that people can’t at the same time seek pain reduction approaches – I’ve certainly tried a bunch over the years, sadly none of them have changed my pain one iota.

When a person seeks help for their pain, underlying that request is typically something much more pragmatic. It’s about how much pain is interfering with important things the person wants to be able to do. It’s also about what the pain might signify – is it cancer? does it mean I need to change my job? does it mean I’m succumbing to old age or the legacy of being reckless as a young person? Clinicians often forget to ask “if pain was less of a problem for you, what would you be doing?” Clinicians also forget to ask what the person’s main concern is about their pain.

Addressing these concerns will, I think, help us move the conversation away from which set of exercises is better, which gadget might be new and groovy, which dominant voice should be listened to, and whether someone is “right” or “wrong” about an approach to helping people.

So perhaps, as we begin to recognise that our treatments are not very effective (despite the occasional win! Just like the gambler’s occasional win), we can work towards helping people with pain move towards what matters in their lives – with pain as a companion in the back seat, rather than taking over the steering wheel. And perhaps, somewhere along the way, there will be a place to stop to offload this passenger, but knowing that we’ll always carry the memories and thoughts of having had it as part of our lives. Pain has taught me so much! I am stronger than I think, I am good at finding wiggle room, and I am more compassionate towards others who are newer to the journey.

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.

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.

Self-management: What do we think about it?


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

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

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

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

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

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

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

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

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

Results – and what do they mean?

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

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

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

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

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

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

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

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

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

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

Clinical reasoning & meaning-making (a long post)


Clinical reasoning is a cornerstone of evidence-based healthcare, in fact some would argue it’s the cornerstone of all healthcare. While there are many different processes, the ultimate purpose of clinical reasoning is to ensure the person seeking help has their needs identified then met, and the clinician has a basis upon which to decide which treatment they should offer.

The approach we use in clinical reasoning, including the information we prioritise and search for, and the way we synthesise the information to make sense of it will depend on the model we have to explain our treatment approach. For example, if we’re occupational therapists, we’re looking for information about the occupations the person wants and needs to do (identifying the person’s needs), and we search for information to help explain how and why this person is unable to manage their occupations at this time. Because occupational therapy is concerned with context – social, interpersonal and environmental, as well as looking at pathophysiological processes, we will also review psychosocial-spiritual factors (beliefs, attitudes, desires, interactions, values, etc) and the physical and social environment/s as part of our clinical reasoning.

Meaning making

But… there’s something missing from this picture of how we go about doing clinical reasoning: the very process of enquiring about “daily doing” (aka occupation) is likely to influence the person seeking help. There is a dynamic process involved in making sense of what’s going on between the clinician and the person. Some would call this “intersubjectivity” (Quintner & Cohen, 2016) meaning “a shared perception of reality between embodied agents… meanings expressed through performance and …perceived by others”, some would call it “embodiment” (Arntzen, 2018) meaning bodily aspects of human subjectivity and referring to my phenomenological body (the way I experience my body), and still others wouldn’t recognise it at all! I like to call it “meaning making” or the way that both parties make sense of what goes on in the “meet the therapist moment” as Benedetti (2011) puts it.

Much of the discussion about clinical reasoning refers to the way clinicians blend implicit/tacit knowledge (knowledge that’s so well-learned that it’s hard to state exactly what it is) with explicit/declarative knowledge (knowledge that we can articulate). Each profession has its own implicit body of knowledge that frames the way they approach the clinical problem. I think patients, or people seeking health care, also have implicit knowledge they bring to the clinical setting.

Some of the knowledge brought in from people seeking treatment is the inner sense that “something is wrong with me”. Without the sense that something is wrong, we don’t seek healthcare, and this can explain why problems like bowel cancer can go unnoticed until the disease is in an advanced state – because symptoms are either very subtle, or not present. With low back pain we know that for most people the sense that “something is wrong” is almost immediate, but may not evolve into treatment-seeking until the problem either doesn’t follow the typical path of recovery, or the pain begins to interfere with what’s important in daily life (Ferreira, Machado, Latimer, Maher, Ferreira, & Smeets, 2010).

We acquire the idea of “something is wrong with me” from personal experience (that queasy feeling just before you get seasick), from others around us (you’re looking really pale today, are you OK?), and from broader society (if your pain persists, see your health professional). But, from some of the qualitative studies I’ve been reading, I think we really start to notice and do something about our “something is wrong with me” intuition once we can’t do things that are important to us and help to define our sense of self (Darlow, Brown, Lennox Thompson, Hudson, Grainger, McKinlay & Abbott, 2018).

It’s clear to me that both the person seeking help and the clinician hold tacit knowledge, and that this knowledge/information is likely to influence clinical reasoning. And some of the implicit knowledge in both clinician and patient changes without either party recognising that’s what has happened.

Back to clinical reasoning and meaning making.

Something I noticed when developing my theory of living well with chronic pain was that many people with ongoing pain learn about the effects on daily doing by themselves (Lennox Thompson, Gage & Kirk, 2019). What I mean by this is they establish what they can and can’t do in mini-experiments (experiences) each day. This experimentation and experience is strongly influenced by the person’s interpretation of what the pain means – and the confidence they have to find ways to cope or deal with pain. Because so much of our knowledge about pain is based on acute pain that generally settles down quickly, it’s unsurprising that some interpretations of persistent pain go awry.

Given the impact of persistent pain is firstly on being able to do what’s important in a person’s life, it makes sense to me that our clinical reasoning should incorporate an understanding of what the person needs and wants to do. It also makes sense to me that we need to understand the person’s current perspective: their beliefs, assumptions and experience of what pain has interfered with. This doesn’t mean that the person’s perspective is 100% accurate with respect to what is going on in their body, because as I pointed out above, many of our beliefs about “what is wrong with me” are based on social constructs. Having said that, it doesn’t mean our clinical interpretation is any more “accurate” – it does, however, mean that until our perspectives align, we’re likely to have trouble developing a shared meaning of the problem. As Arntzen points out “there is a tendency in person-centered occupational therapy practice to consider only the patient-articulated experience and not the multiple layers of embodiment and co-construction of meaning within the therapeutic relationship” (Arntzen, 2018).

One form of clinical assessment, perhaps one that’s under-used, is as Arntzen (2018) describes, the ongoing dialogue between a clinician and the person as the person enacts movements or engages in occupations. This kind of meaning making involves physical and cultural contexts (I may visit a cafe with my client to see how she navigates the tables and people, how she stands and then sits while drinking her coffee, and how she moves from this location to her car); it involves conversations with her about what is going through her mind as she encounters these situations; I may change the location of our next session on the basis of interpreting her performance in this context, adapting my voice, my body language to convey my assessment of this performance.

At the same time, the person I’m working with is also making meaning of how she managed in this situation. From my nonverbal and verbal response to what she does, she may infer that I think she’s doing fine, or that I’m worried about her capabilities. You’ll notice that much of this implicit shared meaning making is not verbal – it’s inference, and may well be inaccurate.

I really like Arntzen’s description of the way clinician and person can work together to develop a shared understanding of “the problems” – I’m quoting it whole:

An embodied intersubjective reasoning can be about questioning how the patient senses their changed body during performance and what it means for his or her ability or obstacles to act, learn, and change. This mode of reasoning can help the occupational therapist problematizing the patients’ performance, capabilities, and possibilities as an interrelated process between action failure, lived habitual practice, and ongoing and shared meaning-making.

Arntzen, 2018

I also love this depiction of therapy: Therapy is a context- specific dialogue between two interpretive, embodied agents, in which the outcomes of their relationship are not given in advance (Arntzen, 2018).

How can all clinicians use this perspective?

While Arntzen is an occupational therapy commentator, and I have framed this post through an occupational therapy lens, I think there is much that other movement and doing-oriented clinicians can draw on. The “ambiguous body” is also core to much of physiotherapy: the person’s experience of being within a body with its attendant limitations, and the body through which goals and aims and life is lived. The ambiguity is particularly relevant in pain where “not being myself” dominates the person’s sense of self – because the experience of pain and movement renders familiar actions as different and needing more attention than usual, or failing where it hadn’t before. Doing is disrupted, and therefore “being” the person I know myself to be is also disrupted. The way the person experiences his body can be influenced by an empathic clinician, to help him recognise changes, or become aware of a return to familiarity.

Arntzen (2018) also refers to tools or the things we use during daily doing – the toothbrush, the car, the clothing we wear, the phone we use that now doubles as computer, camera, aide memoir. Although we can think of these things as “things” have you noticed that you talk about “my phone”, “my car” – and the choice of phone or car situates you in your social environment. If you’ve ever picked up another person’s phone by accident, it just doesn’t feel right even before you recognise that it’s not your own! Occupational therapists incorporate “things” as part of enabling occupation, as do physiotherapists who may incorporate walking aids, temporary splints, or use gym equipment as part of therapy. I think it’s worth considering how the person experiences these things – are they integrated into a sense of self? (think of those tatty neoprene wrist splints worn for months, if not years; and also ponder the gym equipment that still seems alien even after completing a six week rehabilitation programme).

Finally, the crucial element of what we attend to during therapy – and the things we focus on and draw the person to notice – is about our own embodied presence. Arntzen says “Through moment-to-moment interaction, the therapist can have an effect on what becomes foreground and what is background for the patient during the act. The therapist may support or hinder the patient’s habitual practice, or may facilitate or hold back the patient’s own capability to explore new strategies, develop compensatory techniques, and find alternative solutions” (Arntzen, 2008). I’ve often described this process when teaching about eliciting automatic thoughts during movements (eg riding a bike or walking over a slippery floor) – if we attend to “purity of movement” or biomechanics or some externalised idea of how someone ought to do something, we’re likely to elicit more of that and it may be unhelpful. If we collaborate with the person and interconnect we’re just as likely to learn from him as he is from us. I like Schell’s (2014) description of this form of clinical reasoning: ecological professional reasoning.

Concluding

To conclude this lengthy post, I think too often clinicians have viewed their role as dominant, and what they say or ask the person to do as the primary therapeutic agent. I also think there’s a reason someone seeks help from a clinician. Relying only on one form of knowledge without integrating other forms (from the other person, using only language, being primary active agent etc) doesn’t seem to represent what actually goes on in therapy.

Many people with persistent pain learn what they can and can’t do on the basis of experiments that (often, at least in our most disabled people) lead to failure and recognising “I can’t do that any more”. Our approach has been to administer corrective exercises, experiences in moving differently, but we may well have forgotten both the contextual nature of doing and the experiential interpretation made by the embodied person. If we want to help people return to “feeling like themselves” maybe we need attend more carefully to the “what it is like” to experience this new experience, and then support the person to experiment in their own context. I’d call this knowledge translation, or perhaps occupational therapy.

Arntzen, C. (2018). An embodied and intersubjective practice of occupational therapy. OTJR Occupation, Participation and Health, 38(3), 173–180. https://doi.org/10.1177/1539449217727470

Benedetti, F., & Amanzio, M. (2011). The placebo response: How words and rituals change the patient’s brain. Patient Education and Counseling, 84(3), 413-419. doi:http://dx.doi.org/10.1016/j.pec.2011.04.034

Brooks, R., & Parkinson, S. (2018). Occupational formulation: A three-part structure. British Journal of Occupational Therapy, 81(3), 177–179. https://doi.org/10.1177/0308022617745015

Darlow, B., Brown, M., Thompson, B., Hudson, B., Grainger, R., McKinlay, E., & Abbott, J. H. (2018). Living with osteoarthritis is a balancing act: an exploration of patients’ beliefs about knee pain. BMC Rheumatology, 2(1), 15.

Ferreira, M. L., Machado, G., Latimer, J., Maher, C., Ferreira, P. H., & Smeets, R. J. (2010). Factors defining care-seeking in low back pain–A meta-analysis of population based surveys. European Journal of Pain, 14(7), e1-e7. doi:http://dx.doi.org/10.1016/j.ejpain.2009.11.005

Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. doi:10.1080/09638288.2018.1517195

McCambridge, J., Witton, J., & Elbourne, D. R. (2014). Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects. Journal of Clinical Epidemiology, 67(3), 267–277. https://doi.org/10.1016/j.jclinepi.2013.08.015

Quintner, J., & Cohen, M. (2016). The challenge of validating the experience of chronic pain: the importance of intersubjectivity and reframing. In Meanings of Pain (pp. 281-293). Springer, Cham.

Pacing, pacing, pacing…


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

Vexed definitions

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

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

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

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

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

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

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

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

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

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

Cutting to the chase, what did they find?

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

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

So where does this leave us?

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

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

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

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