Chronic pain

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How do help someone change their beliefs about pain?


This post is my little attempt to educate clinicians! Some of you will know I really don’t like the term “pain education” or “educating” people. The reason doesn’t go back as far as the original definition of “educate” which is, according to the Online Etymology Dictionary “educate (v.) Look up educate at Dictionary.commid-15c., “bring up (children), to train,” from Latin educatus, past participle of educare “bring up, rear, educate” (source also of Italian educare, Spanish educar, French éduquer), which is a frequentative of or otherwise related to educere “bring out, lead forth,” from ex- “out” (see ex-) + ducere “to lead” (see duke (n.)). Meaning “provide schooling” is first attested 1580s. Related: Educated; educating.”In other words, educate means to “bring out, lead forth”.

Pain education is a buzz word right now. It’s not a new concept, but it certainly has been hitting the consciousness of a whole bunch of people who previously would have thought of pain either in terms of “oh it’s something to do with the tissues” or “if I can’t find the cause, it must be something in the person’s head”.  Learning about pain and the neurobiology of pain is an excellent thing, a wonderful first step for clinicians who may have missed out on learning this stuff in undergraduate training, and I’m not disrespectful of the need to know more. What I’m a lot uneasy about is thinking of pain education as a primary means for pain reduction, particularly when it’s carried out as “pain ed” where information is dumped without finesse.

We know that simply giving people information in order to change behaviour does not work unless the person is at the “preparation” stage of making a change.  In fact, mass media campaigns about back pain education haven’t been altogether successful despite an early study in Australia showing some really positive gains (Buchbinder, Jolley & Wyatt, 2001; Gross, Deshapnde, Werner, Reneman, Miciak & Buchbinder, 2012). Despite this, there have been numerous studies showing that there are positive gains if people experiencing pain are given good information about pain neurobiology (Louw, Diener, Butler & Puentedura, 2011; Louw, Diener, Butler & Puentedura, 2013; Louw, Puentedura & Mintkin, 2012; Moseley, Nicholas & Hodges, 2004). So… why am I so antsy about pain “education”?

Well, mainly because I think we’re often not trained to do “education” very well. We’re clinicians, we’ve spent years learning about our profession, but on the whole we haven’t been taught to teach – or even, truth to tell, how to help other people change their minds! With the exception of my psychology colleagues, I think most of us learned about what to tell people, rather than how to lead or guide people. And none of us like to be told what to do!

So… how do I go about helping someone think differently about their pain?

The first thing is, I’m not “educating”. The end result of “education” can simply be “Oh goody now I can get on with the real work”, “Yay! I’ve told them what to think, and now if they don’t get it, it’s their problem.” I think if we can change our language we might begin to approach this part of our therapy a little differently. If we aim to help people understand, think differently, reconceptualise or make sense of their experience we can begin to use a whole range of approaches to get to that end result. If we “educate” we might only think about the process of giving information.

How else can we help people think differently about their pain? I think it’s a process of helping people discover for themselves because we know this is a more successful process for learning than if we just give the answers. Think about kids – if we tell a kid how to ride a bike, they probably won’t be very good at riding even though they might know all about centrifugal forces, and inertia, and coordination and how a bike is made.  The reason we want to give information is that it might help give a kid more knowledge about what to think about when they’re riding – but it won’t change that they  need to hop on the bike to learn to ride it. Similarly, in helping people who are experiencing pain, we want people to be able to do things again – and while knowing more about pain might help reduce the fear from not knowing, but in the end people have to DO something differently to truly enact change.

How do I help someone discover for themselves? I begin by asking what people understand about their pain. I ask them what goes through their mind when they experience pain, what they think is going on and how they feel. I draw a diagram like the one below, and begin to fill in the gaps.

I will ask then what they think is going on – their theory – and add that into the diagram. I might ask what do they think that means for them? What do they think they need to do now? What would it mean if that was true? What would it mean if it wasn’t true? What would it say about them if it wasn’t true? How would they know if it was true?

I might ask about other experiences in the body, other sensations, things the person might not notice – maybe by saying “what do you notice in your shoulders? your breathing? your hands?” and so on. And then what these things mean as well. I’m primarily seeking information on the presence of sympathetic arousal (“stress response”) because this often presents at the same time as people experience pain – pain can be anxiety-provoking, so it’s a common reaction but often not noticed.

I include external factors – like what other people might have said, their response to the person’s experience – like advice, warnings, or even behaviours. When I think of other people I often separate “healthcare professionals”, “family”, and “work”, and sometimes include recent media campaigns that may have influenced how the person interprets his or her pain.

The resultant diagram can look a lot like this – but with the person’s own comments and phrases contained within each circle:

20160510_110132The idea behind listening and completing a diagram like this is to help me as a clinician to really hear what the person has been experiencing. We know all these aspects affect the experience of pain, but so often we go in with our own ideas about the problem, and fail to put together this complex web of interactions that help us answer the two questions:

  • Why is this person coming to see me in this way at this time?
  • What can be done to reduce both distress and disability?

My intention at the time I work through this diagram isn’t to change anything. It’s simply to listen and reflect what I’ve heard and to assemble that information in a way that makes some sense. It’s only after I’ve done this that I feel OK to begin to consider intervention/treatment priorities. For some people there is no point in trying to change what they believe – anything I say is likely to be countered by all these other things the person is hearing from everyone else. So instead I might begin by exploring movements and how these might be influencing what the person is focusing on. Or I might think about the impact or effect of avoiding things and talk through “what if” pain was less of a problem.

Sometimes I will address the thoughts and beliefs, basing my suggestions on looking at either the evidence that the belief is true – or the effect of that belief on the person’s experience. We might work out some small behavioural tests to see what happens if the person tries something out – maybe trying a movement they’ve avoided, just to see if their memory of how it was is accurate, or as bad as they recall.

When, and only when, the person indicates they want to know more about their pain, or they’ve found that their assumptions about pain don’t work out (because we’ve established some discrepancies between what the person thinks they’ve been told and their own experiences), then I can begin to go down the pain neurobiology education route – but it’s embedded in two important things:

  1. That they’ve indicated a need and readiness to know more, and
  2. I’ve already listened and tried to understand where they’re coming from

To my mind, doing anything before these two conditions are met is bound to be met with resistance, and risks being either ignored or rejected.

 

To summarise: giving information alone is not enough (usually) to help someone change their understanding of their own pain.

Some people don’t need to be given the whole pain education thing – what they want is to be heard and understood.

People learn more by doing, and if we want to help people do more (ie be less disabled and distressed by their pain) then we not only need them to know more, we need to help them DO more.

That means a lot less talking and a lot more doing.

Telling is less helpful than exploring together.

 

Buchbinder, R., Jolley, D., & Wyatt, M. (2001). 2001 volvo award winner in clinical studies: Effects of a media campaign on back pain beliefs and its potential influence on management of low back pain in general practice. Spine, 26(23), 2535-2542. doi:dx.doi.org/10.1097/00007632-200112010-00005

Gross, D. P., Deshpande, S., Werner, E. L., Reneman, M. F., Miciak, M. A., & Buchbinder, R. (2012). Fostering change in back pain beliefs and behaviors: When public education is not enough. Spine Journal: Official Journal of the North American Spine Society, 12(11), 979-988.

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2011). The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Archives of Physical Medicine and Rehabilitation, 92(12), 2041-2056. doi:http://dx.doi.org/10.1016/j.apmr.2011.07.198

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy Theory and Practice, 29(3), 175-194.

Louw, A., Puentedura, E. L., & Mintken, P. (2012). Use of an abbreviated neuroscience education approach in the treatment of chronic low back pain: A case report. Physiotherapy Theory and Practice, 28(1), 50-62.

Moseley, G., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. The Clinical Journal of Pain, 20(5), 324-330. doi:http://dx.doi.org/10.1097/00002508-200409000-00007

softness

Why does “doing exercise” work?


Bless all the physiotherapists in the world, they keep us doing exercises. And exercises are good because they get us doing the things we want to do in our daily lives. But how does it work?  This is not an exposition on exercise physiology – I’m not au fait enough with physiology to do that and there are many other people out there with vast amounts of knowledge giving us the benefit of their wisdom who have written at length about exercise and why it’s important. Instead I want to talk about some observations – and maybe pose some critical questions too.

For many years I’ve worked in a chronic pain management centre where people with chronic pain attend a three week intensive pain management programme. Staff members from outside the Pain Management Centre (we were located as an outpatient facility on the grounds of a rehabilitation hospital) always told us they could spot a person with pain the moment they saw them wandering from our building to the main cafeteria: people walking slowly, sometimes limping, but often just walking very slowly towards the cafe.

Over the course of the three weeks, this group of people would go from this slow amble to walking briskly and attending the hydrotherapy sessions, doing a daily exercise session (circuit-style); and in the final week of the programme, catching a bus to the shopping centre, purchasing food, coming back and preparing a shared barbecue for friends and family. What a turn-around!

Now, I said I wasn’t going to talk about physiology and I won’t, but I WILL point out that three weeks is not a long time. It’s so little time that it’s impossible for muscle length and strength to change significantly. And yet movements (measured using the six minute walking test and timed up and go) were quicker. Postures changed. People looked more alert and took more notice of the world around them. The question of how it is that this group of people could go from being recognisably “pain patients” to people who could do everyday activities has to be asked.

There are a couple of points to make before I do my thing. Firstly, while the people attending the programme were undeniably uncomfortable, clearly slow in their movements, and most definitely disabled, they weren’t, by usual measures “deconditioned”. In other words, they were of pretty average fitness – and indeed, many had been attending daily gym sessions at the behest of a case manager and under the supervision of a physiotherapist for months! At the same time they were not DOING much and felt extremely limited in their capabilities.

The second point is that although the programme had two “exercise” sessions each day, these were not high intensity sessions! The aim in most cases was to help people establish a baseline – or a reliable, consistent quota of exercise that they could do irrespective of their pain intensity. Most of the work within the exercise sessions was to help people become aware of their approach to activity, to modify this approach, and to then maintain it. Movement quality rather than quantity was the aim.

Here’s where I want to propose some of the mechanisms that might be involved.

  1. Humans like to, and almost need to, compare their performance with other people. It’s not something we choose to do, it’s an innate social bonding mechanism and whether we then modify what we do to match others – or deliberately try to do the opposite to mark out our own stance – we’ve based our behaviour on having observed what’s “normal” around us. And this applies even when people develop disability (Dunn, 2010), but perhaps more importantly, may well be fundamental to how we experience our world – and ourselves (Santiago Delefosse, 2011). When a group of people meet, their behaviour rapidly becomes more similar – similar gestures, similar body positions, and similar facial expressions. I wonder if one of the mechanisms involved in change within a group of people who live with chronic pain is this tendency to mirror one another’s behaviour.
  2. Having proposed that mirroring is one mechanism of change, why don’t groups of people with chronic pain ALL remain slowed and showing pain behaviour? Well, another mechanism involved in behaviour change is operant conditioning. When a group is performing exercise under the supervision of a “wise and caring authority” (ie a physiotherapist), many reinforcements are present. There’s the “no, that’s not quite the right movement” response, and the “oh you did it!” response. The “you can do it, just push a bit more” response, and the “if you can do that, how about another?” At the same time people are set quota or “the number of repetitions” to complete within a timeframe. Simply recording what is happening is sufficient to change behaviour – just ask someone who is on a diet to record their food intake for a week and you’ll likely see some changes! But add to this a very potent response from the wise and caring physiotherapist, and you’ll get warm fuzzies for doing more, and possibly cold pricklies if you don’t try.
  3. And finally, and possibly the most powerful of all, is the process of confronting feared movements – and doing them. Doing them without “safety behaviour” and doing them to specifically confront the thing that makes them scary. And doing them in many, many different settings, so as to alter the tendency to avoid them because they’re scary. A recently published systematic review and meta-analysis of graded activity (usually based on operant conditioning principles, and perhaps on cardiovascular fitness training principles) compared with graded exposure (deliberately confronting feared and avoided movements in a whole range of different contexts) found that graded exposure more effectively reduces catastrophising than just doing graded activation. This shouldn’t surprise us – one of the mechanisms involved in disability associated with nonspecific low back pain is avoiding doing things because people are fearful either of further injury, or of being unable to handle the effects of pain.

Where am I going with this post? Well, despite the face validity of exercise for reducing pain and disability, it’s not the physiological effects that first produce results. It can’t be because tissues do not adapt that quickly. What does appear to happen are a range of social-psychological processes that influence whether a person will (or won’t) do something. What this means is two things:

  • Physiotherapists, and indeed anyone who helps people do movements to reduce disability, really need to know their psychological processes because they’re inherent in the work done.
  • Becoming expert at analysing what a person wants and needs to do, and in being able to analyse then carefully titrate exposure to the contexts in which things need to be done is vital. That’s fundamental to occupational therapy theory, training and expertise.

 

 

Dunn, D. S. (2010). The social psychology of disability. In R. G. Frank, M. Rosenthal, & B. Caplan (Eds.), Handbook of rehabilitation psychology, (2 ed., pp. 379-390). Washington , DC: American Psychological Association

Lopez-de-Uralde-Villanueva, I., Munoz-Garcia, D., Gil-Martinez, A., Pardo-Montero, J., Munoz-Plata, R., Angulo-Diaz-Parreno, S., . . . La Touche, R. (2015). A systematic review and meta-analysis on the effectiveness of graded activity and graded exposure for chronic nonspecific low back pain. Pain Med. doi:10.1111/pme.12882

Santiago Delefosse, M. (2011). An embodied-socio-psychological perspective in health psychology? Social and Personality Psychology Compass, 5(5), 220-230.

Shebadog

Self-managing chronic pain


I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.

cold sea

Pain measurement: Measuring an experience is like holding water


Measurement in pain is complicated. Firstly it’s an experience, so inherently subjective – how do we measure “taste”, for example? Or “joy”? Secondly, there’s so much riding on its measurement: how much pain relief a person gets, whether a treatment has been successful, whether a person is thought sick enough to be excused from working, whether a person even gets treatment at all…

And even more than these, given it’s so important and we have to use surrogate ways to measure the unmeasurable, we have the language of assessment. In physiotherapy practice, what the person says is called “subjective” while the measurements the clinician takes are called “objective” – as if, by them being conducted by a clinician and by using instruments, they’re not biased or “not influenced by personal feelings or opinions in considering and representing facts”. Subjective, in this instance, is defined by Merriam Webster as “ relating to the way a person experiences things in his or her own mind. : based on feelings or opinions rather than facts.”  Of course, we know that variability exists between clinicians even when carrying out seemingly “objective” tests of, for example, range of movement, muscle strength, or interpreting radiological images or even conducting a Timed Up and Go test (take a look here at a very good review of this common functional test – click)

In the latest issue of Pain, Professor Stephen Morley reflects on bias and reliability in pain ratings, reminding us that “measurement of psychological variables is an interaction between the individual, the test material, and the context in which the measure is taken” (Morley, 2016). While there are many ways formal testing can be standardised to reduce the amount of bias, it doesn’t completely remove the variability inherent in a measurement situation.

Morley was providing commentary on a study published in the same journal, a study in which participants were given training and prompts each day when they were asked to rate their pain. Actually, three groups were compared: a group without training, a group with training but no prompts, and a group with training and daily prompts (Smith, Amtmann, Askew, Gewandter et al, 2016). The hypothesis was that people given training would provide more consistent pain ratings than those who weren’t. But no, in another twist to the pain story, the results showed that during the first post-training week, participants with training were less reliable than those who simply gave a rating as usual.

Morley considers two possible explanations for this – the first relates to the whole notion of reliability. Reliability is about identifying how much of the variability is due to the test being a bit inaccurate, vs how much variability is due to the variability of the actual thing being measured, assuming that errors or variability are only random. So perhaps one problem is that pain intensity does vary a great deal from day-to-day.  The second reason is related to the way people make judgements about their own pain intensity. Smith and colleagues identify two main biases (bias = systematic errors) – scale anchoring effects (that by giving people a set word or concept to “anchor” their ratings, the tendency to wander off and report pain based only on emotion or setting or memory might be reduced), and that daily variations in context might also influence pain. Smith and colleagues believed that by providing anchors between least and “worst imaginable pain”, they’d be able to guide people to reflect on these same imagined experiences each day, that these imagined experiences would be pretty stable, and that people could compare what they were actually experiencing at the time with these imagined pain intensities.

But, and it’s a big but, how do people scale and remember pain? And as Morley asks, “What aspect of the imagined pain is reimagined and used as an anchor at the point of rating?” He points out that re-experiencing the somatosensory-intensity aspect of pain is rare (though people can remember the context in which they experienced that pain, and they can give a summative evaluative assessment such as “oh it was horrible”). Smith and colleagues’ study attempted to control for contextual effects by asking people to reflect only on intensity and duration, and only on pain intensity rather than other associated experiences such as fatigue or stress. This, it must be said, is pretty darned impossible, and Morley again points out that “peak-end” phenomenon (which means that our estimate of pain intensity depends a great deal on how long we think an experience might go on, disparities between what we expect and what we actually feel, and differences between each of us) will bias self-report.

Smith et al (2016) carefully review and discuss their findings, and I strongly encourage readers to read the entire paper themselves. This is important stuff – even though this was an approach designed to help improve pain intensity measurement within treatment trials, what it tells us is that our understanding of pain intensity measurement needs more work, and that some of our assumptions about measuring our pain experience using a simple numeric rating scale might be challenged. The study used people living with chronic pain, and their experiences may be different from those with acute pain (eg post-surgical pain). The training did appear to help people correctly rank their pain in terms of least pain, average pain, and worst pain daily ratings.

What can we learn from this study? I think it’s a good reminder to us to think about our assumptions about ANY kind of measurement in pain. Including what we observe, what we do when carrying out pain assessments, and the influences we don’t yet know about on pain intensity ratings.

Morley, S. (2016). Bias and reliability in pain ratings. Pain, 157(5), 993-994.

Smith, S. M., Amtmann, D., Askew, R. L., Gewandter, J. S., Hunsinger, M., Jensen, M. P., . . . Dworkin, R. H. (2016). Pain intensity rating training: Results from an exploratory study of the acttion protecct system. Pain, 157(5), 1056-1064.

P1000573

Live Plan Be


There are times in my work when I feel like I’m banging my head against a brick wall. Even though I’ve been saying most of what I write about on here since forever, it seems to take SUCH a long time for anything much to change! BUT then along comes something totally cool to brush my frustration away, and today I want to talk about Live Plan Be developed by Pain BC in Vancouver, Canada.

A couple of years ago I was given the privilege of being asked to prepare a document analysing the content and approach of self management programmes. I reviewed the Cochrane systematic reviews which all supported a multidisciplinary self management approach as the foundation for chronic pain management. I then turned to the qualitative research to investigate what it’s like to be part of a programme from the participant’s perspective. I found that people attending these programmes enter a journey of self-discovery, that some of the skills don’t seem to make sense at first – but do when the person returns to their own setting. I also found that people living with chronic pain relish the opportunity to feel that their pain is acknowledged, that others on the programmes know what it’s like to live with chronic pain so they don’t have to spend ages trying to explain themselves, and to have the chance to be with others who ‘get it’ means breaking out of the isolation that chronic pain can bring.

I also took a look at the ways these programmes can be delivered. While many programmes are face-to-face, with technology making online programmes increasingly more responsive and flexible, I wanted to see whether there were major differences in the outcomes of each programme. Although it’s difficult to tell because the populations using both approaches are not exactly the same, from what I could find, the outcomes were comparable. This is really exciting because it means more people can get access to approaches that have solid research underpinning them without having to travel to and from, and without the staffing needed for face-to-face programmes.

As a result of my report, I suggested that Pain BC might like to investigate developing a whole new programme for helping people live well with chronic pain, and to make this an online programme with some of the features that the research into online behaviour change programmes has identified as useful. Things like having a discussion forum so participants can connect and share their experiences of the reality of living with chronic pain. Having action prompts so that people don’t just read something – but also get prompted to DO something with that information – and most importantly, have this tied to where the person is currently at in their journey towards making changes to live with their pain. I recommended having some self-assessments so people can track their progress, and a place where they could record the things that worked, and those that didn’t work, so it’s easy to share with other people including health professionals.

I’m SO excited to see how Live Plan Be has come together – and it’s now LIVE!

The team that has put this together has done an amazing job, exceeding my wildest dreams of what the programme might look like. It’s sophisticated, easy to use, has lovely graphics and video recordings of real people doing real things, has SO MUCH information on it – and it’s free! If you have chronic pain, or you work with people living with chronic pain, I would love you to take a look at it, and try it out. Then let me know what you think. Whatever feedback you give, you’ll know that the team will work hard to keep on making it better and more useful, so please let them know.

Meantime, I’m hoping that this will bring some hope to people who have struggled with chronic pain, and would like to learn to live well.

bridge to

Neuroplasticity: Transforming the brain


Neuroplasticity is a concept that’s taken the world by storm over the past years – take a look at this Google graph of the growth in searches for the term!Capture

 

The idea behind using the brain’s ongoing neuroplasticity is that we can influence the connections between neurones by doing and thinking differently. Great idea, and definitely one we can use. There have been many discussions about how much we can influence plasticity – or not (this post refers to education and neuroplasticity, this to an old discussion about Norman Doidge’s book – and some of the points that have been omitted). Whatever the real situation, there’s no doubt that our brains do continue developing, forming and reforming connections between synapses and generally responding to our world and the interactions we have with our world via our bodies.

Pain researchers have been particularly enraptured by the idea that the brain can develop new connections, driven it seems by a greater understanding that our experience of pain is an integration of information from the body, modulated at every step of the way by both ascending and descending influences, right until that information is processed by various parts of our brain and, in combination with past experience, expectations, beliefs, predictions for the future, current goals and priorities and in our sociocultural context, produces what we know as pain. Long, long sentence – but you know what I mean!

So, the reasoning seems to go, if pain is an output of our nociceptive system and produced via all these interactions, then neuroplasticity should mean painful experiences can be reversed using the same principles. And yes! Lo and behold! In some cases this happens – vis all the research produced by Moseley and crew in Adelaide, and promoted by the NOI group, and others.

While Lorimer’s group has produced probably the most consistent body of work in relation to therapy based on neuroplasticity, with NOI promoting many of these approaches, it’s not the only group to do so.  Today I’m taking a look at Michael Moskowitz and Marla Golden’ book Neuroplastic Transformation: Your brain on pain, and the accompanying website.

I’ve been asked to take a look at this by a follower, and it’s been an interesting and fun project to work on.

The book is a spiral bound, colour printed A4 sized book with large print (yay!) and gorgeous illustrations of brain sections and neurones and other beautiful diagrams relevant to understanding the brain. The principles underpinning the book are that if we can understand a bit more about the brain, we can harness the functions so we can train our brain to be a little more settled and out of pain. The three neuroplastic rules are: What is fired is wired; What you don’t use you lose; When you make them you break them; when you break them you make them.  The premise is that it’s possible to reverse the changes that occur when a person is experiencing persistent pain – “treathment that uses the basic principles of neuroplasticity to change the brain pathways back to normal function and anatomy”. The authors discuss using thoughts, images, sensations, memories, soothing emotions, movements and beliefs to modify the experience.

The process of treatment involves four phases: Rescue, Adjustment, Functionality and Transformation, or RAFT. Rescue involves generating hope that pain can be changed by providing information about neuroplasticity, and developing a partnership between clinician and person living with pain. Adjustment involves “stabilising” the pain disorder – using a multi-modal approach including medications, injections, and psychosocial treatments to increase activities while reducing pain – emphasising that adjusting to the pain disorder is not the end goal. Functionality involves the person, every time he or she experiences pain, challenging the experience with non-painful stimuli. In other words, every time the person becomes aware of his or her pain, they need to use thoughts, beliefs, images, sensations, movements and emotions to “reverse the neuroplastic processes that cause persistent pain”. Finally, Transformation involves using the experience of overcoming pain to establish new ways to give pleasure.

What I like about this approach is that it is explained and illustrated very well, using up-to-date information and illustrations. It strongly supports self-management or the person being as much part of the treatment as any clinician. That’s good – because, as any of us who have ever tried to change a habit know very well, change is hard! And that’s probably one of the three main concerns I have about employing this approach as a core pain treatment.

My concerns:

  1. Reversing or altering cortical pathways is truly difficult – and it’s perhaps not possible to completely reverse, especially if the problem has been present for a long time. Here’s why: can anyone remember learning to ride a bike? Remember all that falling off, the wobbling, the stopping and starting, the weaving all over the place? How many hours did it take to learn to do that successfully, smoothly and to the point where you were safe to ride in traffic? Now, for some of you, it will have been YEARS since you jumped on a bike. Do you forget how to ride? No. You might wobble a bit, but you don’t actually forget. Similarly, in phobic states, pathways associated with avoiding the feared stimulus remain “wired together” even when new pathways associated with approaching the stimulus are developed. What this means is that it’s possible for a spider phobic to remain somewhat jumpy around a spider even after treatment has reduced the screaming heebie-jeebies. When we think about pain and the myriad associations between the experience, context, interoception (internal body feeling-sense), memories, emotions, language, treatment visits, investigations – there are so many connections that become wired together as a result of experiencing persistent pain that to completely reverse it is an almighty monumental challenge requiring hours or dedicated practice.
  2. While the principles of a neuroplastic approach are well-known, there are some differences in the approach depicted in this book that I’m not aware of being tested formally in pain research. For example, while it’s nice to have a pleasant smell or memory brought to mind, I’m not aware of studies showing that doing this changes memory for pain (or pain intensity). I may well be wrong about this and I’d love someone even more geeky than me to bring some studies to my attention.
  3. My third reservation relates to the well-established research showing that persistent pain is not easily changed, and meanwhile, in the pursuit of pain reduction, many people lose out on good things in life. While people are sitting in waiting rooms, spending time with therapists, monitoring and checking on pain intensity, it becomes very difficult to carry on with valued actions. There are many ways to make space to have your pain and live as well. This doesn’t mean you need to give up hope of pain reduction, but it does mean the focus moves from this as a life focus and on to the things that make life of any kind worthwhile. Maybe the two approaches can go hand in hand, but to my mind the very intensive nature of the approach within this book means that attention must be shifted away from valued actions and towards doing the things that this book argues will reverse pain.

Overall I like the approach within this book – I like that it’s person-centred, positive, uses underlying principles and encourages the person to be actively involved in his or her treatment. There’s no way you can be a passive recipient with this approach! I would love to see some more in-depth study of the effects of this treatment, even in a series of single-subject experiments. I think it could be very helpful, but I’m a little concerned at the focus on pain reduction as the primary goal, and the time and energy this approach demands.

duck duck go

Pain exposure therapy – what is it?


Thanks to an enquiry on my About page, I’ve been prompted to read a little about pain exposure therapy. This is a little-known approach to helping people with CRPS type I (the type that is NOT associated with a peripheral nerve injury. Type II is the same phenomenon but IS associated with an injury to the nerve.)

Graded exposure is an approach commonly adopted to help those people who are afraid of, or phobic about, a “thing”. Most of us will know about spider phobia treatment where people are progressively encouraged to stay with feelings of anxiety and distress while being shown and eventually handling a spider. Graded exposure has also been used to help people who are fearful of experiencing painful flare-ups and therefore avoid doing things – it’s been a successful approach especially for people who report high levels of pain catastrophising (or, as I like to put it, “freaking out” at fluctuations in pain). I’ve reported on graded exposure several times in my blog over the years, and use the approach myself with great success. BUT this approach requires some foundation skills for both the clinician AND the person living with pain.

Before I delve into the skills I think clinicians and people living with pain need, let me outline the treatment and it’s rationale.

The basis for this treatment is the idea that if pain is going to be present, and it no longer represents an indication of the state of the tissues, then avoiding movements is no longer necessary for tissue healing. At the same time, people generally don’t want to do things that flare pain up, and so they tend to avoid those movements. The issue is then much more about how to gradually get used to the fluctuations in pain (ie freak out less) while at the same time beginning to do things with the painful limb. Supporting this approach is some basic science that suggests the less we use an area of our body, the more distorted our brain’s representation of that area becomes.

So, after discussing basic information about pain and tissues, in pain exposure therapy, clinicians work together with the person living with pain to:

  • begin doing movements that are usually avoided
  • avoid responding to any behaviour that is usually associated with experiencing pain – things like grimacing, groaning, saying ouch, and rubbing the area
  • provide progressively more demanding input to the painful area despite changes in reported pain
  • encourage increased normal use of the area within daily life – eg holding onto bottles, cups, utensils, putting shoes and sox on, walking normally

In addition, clinicians use this type of therapy also prescribe many exercises to be carried out frequently through the day despite painful flareups. Sometimes clinicians will restrain the other unaffected limb so that the painful limb HAS to be used just to get things done.

Some of you reading this blog will be reminded of the work by Doidge in which a very similar approach is used during rehabilitation from stroke or traumatic brain injury – by using the limbs in a normal way, new neuronal pathways are developed, allowing the limb to eventually return to pretty much normal function.

Others of you will probably be saying “how cruel!” and “but Moseley and Butler say don’t do things that increase pain because – neurotags!”

Here’s my take on it.

Currently there exist very few, if any, randomised controlled trials of this approach for CRPS I. Actually, there are few RCTs for ANY form of CRPS and ANY treatment for CRPS.

This means we don’t have a great deal of evidence to go on when trying to decide the best approach for managing the functional problems experienced by people living with CRPS. We know that for some people mirror therapy is helpful, while there is less support for graded motor imagery (Bowering, O’Connel, Tabor, Catley et al, 2013).  We know there are very few pharmaceuticals that provide any pain reduction for people living with CRPS. There is “low quality evidence that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo” (O’Connell, Benedict, McAuley, Marston et al, 2013), but otherwise very little else has been shown to have any effect at all either on pain intensity or function.

We do know that physiotherapy and occupational therapy focusing on function rather than pain reduction may have some longterm positive effects (O’Connell, Benedict, McAuley, Marston et al, 2013), and we also know that graded exposure treatments for other types of pain problem, especially low back pain, have been effective (studied since 2001).

BUT here’s the thing. Unless the person living with chronic pain is comfortable with the idea that this approach directly confronts their fear of painful flare-ups, it’s just not going to float. Both the clinician and the person living with pain need to understand the underlying principles of this approach – and have some skills to deal with the very likely distress that will emerge when pain inevitably flares up.

What we should also know is that this approach does not try to reduce pain – although for many people, according to one study (Barnhoorn, Oostendorp, van Dongen et al, 2012) pain does reduce. Yet for others, pain increases – but people can do more.

Where do I stand on this?

I think it’s worth a try but only if the person conducting the therapy is VERY comfortable with the underlying principles of graded exposure as it’s used for phobia. AND has skills to manage their own discomfort at seeing someone else experiencing high levels of distress. To me this means having had some additional training in graded exposure for phobia, and lots of practice at using mindfulness and other forms of maintaining empathy despite seeing another person being distressed. It’s not easy to be empathic without either losing your own cool – or “giving in” to the distress of the person – and that just undoes the therapy.

It also means the person participating in the therapy, ie the patient, must be completely on board with it, and not just the person but also his/her healthcare team AND family. AND have some skills to deal with distress that comes with exacerbations of pain. This approach is not for the faint-hearted, or for anyone who feels coerced into participating in the treatment without feeling very confident that they can maintain their involvement.

 

Barnhoorn, K. J., van de Meent, H., van Dongen, R. T. M., Klomp, F. P., Groenewoud, H., Samwel, H., . . . Staal, J. B. (2015). Pain exposure physical therapy (pept) compared to conventional treatment in complex regional pain syndrome type 1: A randomised controlled trial. BMJ Open, 5(12), e008283. doi:10.1136/bmjopen-2015-008283

Barnhoorn, K. J., Oostendorp, R. A., van Dongen, R. T., Klomp, F. P., Samwel, H., van der Wilt, G. J., . . . Frolke, J. P. (2012). The effectiveness and cost evaluation of pain exposure physical therapy and conventional therapy in patients with complex regional pain syndrome type 1. Rationale and design of a randomized controlled trial. BMC Musculoskeletal Disorders, 13, 58.

Barnhoorn, K. J., Staal, J. B., van Dongen, R. T., Frolke, J. P., Klomp, F. P., van de Meent, H., . . . Nijhuis-van der Sanden, M. W. (2014). Are pain-related fears mediators for reducing disability and pain in patients with complex regional pain syndrome type 1? An explorative analysis on pain exposure physical therapy. PLoS ONE [Electronic Resource], 10(4), e0123008

Bowering, K. J., O’Connell, N. E., Tabor, A., Catley, M. J., Leake, H. B., Moseley, G. L., & Stanton, T. R. (2013). The effects of graded motor imagery and its components on chronic pain: A systematic review and meta-analysis. Journal of Pain, 14(1), 3-13

Ek, J. W., van Gijn, J. C., Samwel, H., van Egmond, J., Klomp, F. P., & van Dongen, R. T. (2009). Pain exposure physical therapy may be a safe and effective treatment for longstanding complex regional pain syndrome type 1: A case series. Clinical Rehabilitation, 23(12), 1059-1066.

O’Connell Neil, E., Wand Benedict, M., McAuley, J., Marston, L., & Moseley, G. L. (2013). Interventions for treating pain and disability in adults with complex regional pain syndrome- an overview of systematic reviews. Cochrane Database of Systematic Reviews, (4).

van de Meent, H., Oerlemans, M., Bruggeman, A., Klomp, F., van Dongen, R., Oostendorp, R., & Frolke, J. P. (2011). Safety of “pain exposure” physical therapy in patients with complex regional pain syndrome type 1. Pain, 152(6), 1431-1438.

a-different-point-of-view

Stigma and chronic pain


Stigma is about devaluing and discrediting behaviours made by people towards those who have or are “different” from the average Joe or Josie Bloggs. For people experiencing and living with chronic pain, stigma may occur because the “average” experience of pain is associated with actual or potential tissue damage (or described in these terms) and for most chronic pain the “issues in the tissues” are less than expected by people holding a biomedical viewpoint.  Add to this that most people in the world know about acute pain which settles as expected whereas chronic pain persists, seems “disproportionately” bad in comparison with what’s expected.

De Ruddere and Craig (in press) have reviewed the literature to understand what is known about stigma and chronic pain, and what can be done about it. I thought it an apt paper to include in this blog because almost every person with chronic pain has, at some point, said they don’t feel their pain is either being taken seriously, or is accepted as real, or feel like they’re not being believed. Of course, pain is not the only condition where self-report is the only thing that we can use to determine the experience – depression, anxiety, post-concussion syndrome, fatigue are among the common experiences that are not given the kind of acknowledgement that we give to fractures or appendicitis or asthma.

People living with chronic pain say their partners, family and friends don’t seem to believe them, and that health professionals think their pain is exaggerated, imagined. They feel they’re being told it’s their fault, to “pull yourself together”, just “harden up” and often feel they’re being told to go away because they don’t have a real problem. Whether this is in fact the case undoubtedly depends on the persons involved – but it’s a common story and one I’ve heard in my clinical experience over and over and over again.

I guess some of the worst things I hear about stigma is that experienced by people seeking help for their pain from health professionals. If things don’t seem to add up, in the eyes of the observer, then people experiencing chronic pain can get less sympathy, are disliked, thought of as less meriting help, and often suspected of simply wanting attention.

The effect of this kind of behaviour from those charged with the duty to care is on distress and disability. People who feel misunderstood or maligned by treatment providers may receive less care and as a result, are able to do less, and feel rejected – social rejection and chronic pain share some similar neurobiological pathways (Eisenberger, 2012). Additionally, because the people experiencing the pain probably also hold similar beliefs to those who reject them (because the most common beliefs about pain are that there’s something going on in the tissues, and pain should fit with that tissue damage), they begin to doubt themselves, question their own responses, wonder if they really are as badly off as they feel. I know I felt this during my recovery from mild traumatic brain injury, when I wondered if I was actually just wanting a break from having to do things – yet at the same time I couldn’t doubt the performance deficits I experienced every day, and the need to sleep for several hours a day because otherwise I just could not function.

De Ruddere and Craig posit some reasons for other people stigmatising those living with chronic pain. One is that with acute pain, behavioural responses are often involuntary, automatic responses such as reflex withdrawal, vocalisations (groaning), or facial expressions. These elicit a primitive caring response in most people. Yet with chronic pain, many of the responses are less reflexive, and more voluntary – such as withdrawing from doing things or describing pain. These are usually thought to indicate that we’ve thought about them, and we’re doing them on purpose or deliberately.  When these behaviours take place alongside the general belief that pain “should” be acute and related to tissue damage, not showing automatic pain behaviours begins to look kinda fishy.

In evolutionary biology, altruistic behaviour towards others is based on an underlying assumption that if we do to others, they will do to us in turn. A sort of reciprocity. When people don’t look like they’re genuinely in pain (ie their behaviours aren’t the same as those carried out with acute pain), suspicions rise – “Are you really hurt, or are you wanting to get something for nothing?”

De Ruddere and Craig suggest some other theoretical explanations for the high level of suspicion applied to people with chronic pain, but I think this evolutionary one is an especially challenging one to deal with. Most treatment approaches attempt to upskill people living with pain to be able to communicate their problems effectively, and to reduce the frequency and interference of pain behaviour. This is only half the answer. We need to continue giving healthcare providers a deep understanding of a biopsychosocial approach: that pain is ALWAYS involves biological processes, psychological processes and is set within a social context, so that healthcare delivery goes well beyond assuming that “if the pain is gone the person is back to normal”.

Get this paper once it comes out in print. I think it’s time the social aspects of our pain management treatments were given more airtime, and this paper provides some exciting direction for future research and clinical practice.

 

 

 

De Ruddere L & Craig KD. (2012). Understanding stigma and chronic pain: a state of the art review. Pain.

Eisenberger NI. The pain of social disconnection: examining the shared neural underpinnings of physical and social pain. Nature Reviews Neuroscience 2012;13(6):421-434.DOI: 10.1038/nrn3231

Lake Selfe

Your brain has no delete button


Yesterday, nearly five years after the devastating earthquakes in Christchurch, New Zealand, we had another rude reminder that we live on an active fault zone. A 5.7 magnitude earthquake hit just after lunch, throwing me to the ground, breaking our pendant lights, and a bottle toppled off the shelf beside the toilet, falling into the toilet and smashing the rim (lesson to the men in the house: do not leave the toilet seat up!). Needless to say, my heart was racing for a wee while afterwards!

People living in our fair city have had thousands of quakes to deal with over the past five years, most of them not as powerful as yesterday’s one, but nevertheless rather unsettling. In reflecting on the experience I’m reminded that our nervous system is wired more towards learning and reacting to immediate threat – and anything that represents a threat – than it is to calming and soothing the beast within. In fact, there’s good evidence to suggest that we don’t ever “unlearn” a learned response, instead we develop new pathways that can become stronger and more heavily myelinated than the learned paths – but given a similar context we’re as likely as not to activate that same old set of neural impulses and some researchers suggest this is because of epigenetic changes. (Take a look at this study in rats for one reason – it seems contextual memory triggered by cues is more powerful than we thought!)

As I mused on my startle response which is as well-developed as ever (though I jump less often at trucks going past than I did in the months just after the big quake), I thought about our experience of low back pain – or indeed any other chronic pain. While we’ve got very excited about neuroplasticity, and I think we should, I also think we need to temper our enthusiasm with some reality checks. Even though we seem to be able to reduce pain by using neuroplasticity within our treatments (see Pelletier, Higgins and Bourbonnais, 2015, among others), we need to remember that the pathways associated with chronic pain are many – and not just those to and from the sore part! In fact, because we’re fantastic learning creatures, there are many, many ways in which we encode an experience.

We have already seen that seeing a painful limb can increase the experience of pain in people with CRPS and vice versa (Sumitani, Shibita, Iwakura, Matsuda, Sakaue, Inoue et al, 2007), and this phenomenon has been used in mirror therapy and virtual reality treatments for people with CRPS and some other forms of pain (Foell, Bekrater-Bodmann, Diers & Flor, 2014). As a result of this fascinating finding, treatments using laterality, graded motor imagery and novel movements have all become very popular with varying degrees of effectiveness (especially outside the clinic!).

What perhaps we’ve forgotten is that because we’re incredibly good at learning, we’ve associated not just the “internal” location/intensity/quality of that experience, but also a whole bunch of other associations – words (pain, ouch, suffer, back, leg, doing, lifting, crumbling, disc – and others!), movements (sitting, walking, turning, twisting, crouching, climbing), emotions (happy, sad, glad, awestruck, helpless), images (of a back, leg, someone else sitting or walking or moving), locations (treatment facilities, workplace, the garage, making the bed, the pill bottles in the bathroom) – the list goes on! Even the smell of liniment or whatever rubbing lotion was used can bring all those associations back into consciousness.

And each association branches off and associates with other things in a never-ending network of related experiences and memories and relationships. Is it any wonder that some people don’t miraculously “get better” when we decide to “educate” someone about their pain? Especially if we haven’t given them the respect of listening to how they’ve made sense of their situation…

Now in the series of earthquakes from 2011 until now, I haven’t ever really become overwhelmed with anxiety and helplessness. Yes I have been fed up, frustrated, saddened, and I’ve grieved, got angry at bureaucracy and thought that things surely could be done more quickly. Until yesterday, when the growing anxiety (because the houses being built close to us mean there are many hundreds of thumps and thuds as foundations are hammered into the ground far deeper than ever before) I’d been feeling over the past month or so really got triggered by a very real and unexpected event.

Intellectually I know this quake is just another in the same series as we’ve been having. Nothing terribly awful happened. No-one got hurt. BUT my jitters are back – and every time I look at cracks in the ring foundation, the smashed toilet, look at my broken vase, or go to use the Pyrex jug that got smashed, I’m reminded that this event has happened – and could again. Pictures of the cliffs falling at Sumner, clouds of dust rising from them as they tumbled into the sea; images of broken crockery at Briscoes and wine and beer at the local supermarket; the news, and friends talking on Facebook – all of these remind me of what we’ve just been through and have been for so long.

Now picture the person you’re about to see today. That person with the painful back. The person who flicks through the magazines in your waiting room and sees adverts for lotions, analgesia. Who smells the scents in your area. The one who finds it so hard to roll over in bed every night. Or to sit and watch TV. Just remember that you may be able to develop new and novel pathways for moving so that the pain itself isn’t triggered by movements – but all these other associations are still there, and will be from now on. And think beyond the clinic door and into your patient’s daily life. How will you help them transfer the feeling of safety that being with YOU evokes into a feeling of safety everywhere they are? This is why developing effective self management skills, especially becoming nonjudgemental despite experiencing pain is so very, very important.

 

Foell, J., Bekrater-Bodmann, R., Diers, M., & Flor, H. (2014). Mirror therapy for phantom limb pain: Brain changes and the role of body representation. European Journal of Pain, 18(5), 729-739. doi:10.1002/j.1532-2149.2013.00433.x

Pelletier, R., Higgins, J., & Bourbonnais, D. (2015). Addressing neuroplastic changes in distributed areas of the nervous system associated with chronic musculoskeletal disorders. Physical Therapy, 95(11), 1582-1591.

Sumitani, M., Shibata, M., Iwakura, T., Matsuda, Y., Sakaue, G., Inoue, T., . . . Miyauchi, S. (2007). Pathologic pain distorts visuospatial perception. Neurology, 68(2), 152-154.

bars across my window

Deconditioning? Or just not doing things any more?


For years there has been a general wisdom that people with chronic pain who gradually stop doing things “must” be deconditioned. That is, they must lose fitness, cardiovascular and musculoskeletal, and this is often used to explain low activity levels, high disability and the prescription of graded exercise.

While this explanation makes sense (remember what happens to limbs when they’re in plaster for six weeks? all skinny and wasted?) – it doesn’t inevitably hold, in my experience. I vividly recall a person who routinely swam 20 lengths of an Olympic pool in very fast time every day, yet could not, in his estimation, return to any kind of work, and who did not sit – for an entire three week programme. It’s always seemed a bit odd to me that even though people report they can’t do many everyday activities, they can complete a rigorous gym programme.

So, skeptical me was very pleased to see another paper by the wonderful Nicole Andrews, occupational therapist and PhD, and her colleagues Jenny Strong and Pamela Meredith. This one is about approach to activity engagement, certain aspects of physical function and pain duration and was published in Clinical Journal of Pain in January this year (reference at the bottom of the page). It’s an important paper because it challenges some of the assumptions often made about activity levels and “fitness”, as well as the use of an operant conditioning model for pacing – pacing involving working to a set quota, rather than letting pain be the guide. The concept of pacing has been woven into most pain management programmes since the early days of Fordyce, but more recently has been criticised for lacking a clear definition, and for very little in the way of empirical support as a stand-alone treatment.

In this study, Andrews and colleagues examined the relationship between certain activities and a “habitual” approach to activity engagement, and pain duration. This is a different approach to studying activity and over- or under- activity in that it examines specific activities rather than using a global measure of disability – and this is important because the people we work with do specific activities (or occupations as I’d call them) and it will be more important to be able to predict the types of activities people do, or not do, rather than simply using a general guide.

Andrews and colleagues used a tool I particularly like called the Pain and Activity Relations Questionnaire (McCracken & Samuel, 2007) – this is a 21-item measure that looks at how people approach their activities. It has three subscales – avoidance, confronting, and pacing. Confronting measures “over”activity, while the other two are self explanatory.  They also used the Oswestry Disability Index, an old standard in measuring physical functioning.

The analysis was really interesting, and well-described for those who want to dig deeper into how this team found their results. I’ll cut to the chase and simply point out that they used the items rather than the overall score of the ODI, which allows for a more fine-grained analysis of the kinds of activities individuals engaged in, and how they approached those activities. This is the stuff occupational therapists and physiotherapists really want to get their teeth into!

So, what did they find?

Firstly, individuals who reported high levels of avoidance and low over-activity also reported significant restriction in personal care tasks, compared with those people who reported low levels of both avoidance and activity. There was no relationship between this item and pain duration, but there was a relationship between pain intensity and interference.

Lifting tolerance, however, was affected by pain duration and pain intensity rather than avoidance patterns. Walking tolerance wasn’t affected by approach to activity, or pain duration, but age and pain intensity were important factors. Sitting tolerance was not related to approach to activity, and only pain intensity was a contributor rather than pain duration. Finally, standing was also not associated with approach to activity and was only related to pain intensity.

Sleep was influenced by approach to activity engagement – and with pain duration. This means people with pain for one year and who were inclined to be “over” active and not avoidant, and those who were highly avoidant and highly “over”active were more likely to report problems with sleep than those with low avoidance and low “over” activity. (BTW I put the “over” in quotes because it could also be called “confronting” or “pushing” or “doing” – I think it’s weird term not yet well-defined). The group most likely to report poor sleep were those reporting high “over”activity and low avoidance who reported sleep problems 9.23 times more than those reporting low “over”activity and low avoidance. Once again, pain severity was the only other variable influencing reporting.

Sex life was not associated with approach to activity engagement, nor to pain duration. Social life, however, was associated with approach to activity engagement with those reporting high avoidance and “over”activity reporting more restrictions than those with low levels of both, along with similar results for those reporting high avoidance and low “over”activity – again, pain duration wasn’t associated, but pain intensity was.

Finally, travel was more likely to be reported a problem by all those compared with the low avoidance, low “over”activity group, with the high avoidance, low “over” activity group most likely to report problems.

What does all this mean?

Bearing in mind that the population from whom these participants were taken were attending a tertiary pain management centre programme, and that this is self-report, the findings from this study are really very exciting. As the authors point out, when the ODI is mapped on to the ICF (International Classification of Functioning, Disability and Health) the instrument covers sleep (body function), personal care, lifting, walking, sitting and standing (activity limitations), and social life and travel (participation restrictions). Activity limitations can also be divided into two domains – mobility and daily activities (basic and instrumental activities of daily life) – walking, standing and sitting are therefore “mobility”, while personal care and lifting are “daily activities”.

These findings show that mobility activities were not associated with an individual’s approach to activity engagement – they differ from the other items in that they’re performance skills, that is, they make up other activities can’t be reduced to a smaller component. The authors suggest that the responses to these items in this study may reflect the individual’s perceived capability to engage in daily activities, as opposed to their actual physical performance to engage in these tasks.

I think this means it’s important to ask about what people do in daily life, rather than rely simply on reported levels of walking or sitting. Tie self report into activities – for example, sitting tolerance might be best described in terms of whether a person can sit to watch a whole TV programme, or whether they need to get up during the ad breaks.  It’s important to note the relationship between approach to activity and poor sleep – sleep being one of those aspects of living with pain that people most want addressed. Perhaps by moderating the approach to activity we might be able to help people develop more effective sleep patterns. It also seems to me that we need to tie outcomes from pain management to real life activities in which an individual wants to participate – rather than a more “objective” measure such as the six minute walk test – which might satisfy our urge to measure things in a nice orderly way, but might not be relevant to an individual’s life.

Finally, this study shows that overactivity and avoidance patterns are not inevitably associated with reduced capacity over time. I think this is a “received wisdom” that needs to be unpackaged

 

 

Andrews, N. E., Strong, J., & Meredith, P. J. (2016). The relationship between approach to activity engagement, specific aspects of physical function, and pain duration in chronic pain. Clinical Journal of Pain, 32(1), 20-31

McCracken LM, Samuel VM. The role of avoidance, pacing, and other activity patterns in chronic pain. Pain. 2007;130:119–125.