self management

When it hurts – but it’s important to keep doing


To date, despite years of research and billions of dollars, there is no satisfactory way to reduce pain in all people. In fact, our pain reduction treatments for many forms of persistent pain are pretty poor whether we look at pharmaceuticals, surgery, psychological treatments or even exercise. What this means is there are a lot of disillusioned and frustrated people in our communities – yet life carries on, and people do keep doing!

In an effort to understand what might help people who don’t “find a cure”, researchers and clinicians have been looking at mediators. Mediators are factors that explain a relationship between two variables. In the study I’m examining today, the predictor is pain intensity, and the criterion variable is participating in valued life activities (the things we want or need to do). The research question was whether self-efficacy and/or pain acceptance mediated engaging in valued life activities.

Ahlstrand, Vaz, Falkmer, Thyberg and Bjork (2017) used a cross-sectional study to explore relationships between the variables above in a group of people with rheumatoid arthritis (RA), drawn from three rheumatology registers in South East Sweden. Participants were required to have confirmed RA; be between 18 – 80 years; have had RA for four years or more; and have data included in the quality register – a total of 737 people agreed to take part (from a total of 1277 meeting entry criteria).

The researchers used the Swedish versions of Health Assessment Questionnaire (Wolfe, 1989) to establish degree of difficulty in daily activities, as well as the Valued Life Activities scale (Katz, Morris & Yellin, 2006); the Arthritis Self-Efficacy Scale (Lorig, Chastain, Ung, Shoor & Holman, 1989); and the Chronic Pain Acceptance Questionnaire (Wicksell, Olsson & Melin, 2009).
The statistical analyses included Chi-square tests of independence to identify significant differences in categorical factors due to gender, and steps were taken to establish whether there were gender differences for pain acceptance, self-efficacy and valued life activities. Pearson correlations were used to explore the relationships between acceptance, self efficacy and the valued life activities summary score, and then univariate regressions were undertaken to test each individual factor (eg pain, pain acceptance and self efficacy on valued life activities). Then, only the significant contributors in univariate analyses where entered into the hierarchical linear regression models. The tests were to establish whether self-efficacy would predict valued life activities after acceptance and pain scores were considered.

Finally, structural equation modelling was used to examine the contribution and influence of pain, activity engagement and self-efficacy on difficulties performing valued life activities. A note here: The authors used the structure of the ICF model to name the constructs in their structural equation model.

What did they find?

The people who responded to this survey tended to be less active than those who were on the registers but didn’t respond, so we need to keep this in mind when we interpret their results. They found that women reported slightly more pain than men, but there were no differences between men and women on all measures except that men scored more highly on the symptom control subscale of the self-efficacy measure. A point to note here is that, unlike the Pain Self Efficacy Questionaire, this measure includes attempts to reduce or control pain and/or disability, so it’s a slightly different construct from the PSEQ which measures confidence to engage in doing things despite the pain.

In terms of pain, pain acceptance, and arthritis self-efficacy, there were low to moderate associations between these and engaging in valued life activities. In fact, all pain acceptance and self-efficacy constructs measured in this study were associated with performing valued life activities. In other words, when people are confident, and willing to do things and engage in activities despite pain, the more valued activities they actually do. In fact, one of the more striking findings was a negative relationship between activity engagement and performing valued life activities – those with lower activity engagement scores reported great difficult engaging in what was important to them (not especially surprising given that both scales are about doing what’s important and getting on with life).

Now for the really geeky model: structural equation modeling found a rather complex relationship between all the variables – so complex I’m going to include the diagram.

What does it show? Well, there’s a relationship between pain intensity and valued activity engagement – the more pain, the less people do what’s important. BUT this is mediated by “personal factors” (remember the ICF labels). These personal factors are the pain acceptance activity engagement, self-efficacy for pain and self-efficacy for symptoms. Interestingly, pain willingness, the other subscale on the pain acceptance scale, wasn’t correlated.

Or is it surprising? To my mind there are some interesting conceptual issues with this study. Firstly, in a group that is self-selected and represents slightly more disability than those who didn’t respond, it’s not surprising that pain intensity and disability were correlated. This is something we see often pre-treatment in chronic pain settings. It’s also no surprise to me that the Arthritis self-efficacy scales were associated with valued activities, and with activity engagement – the arthritis self-efficacy scales ask “How certain are you that you can decrease your pain quite a bit?”; “How certain are you that you can that you can make a small-to moderate reduction in your arthritis pain by using methods other than taking extra medication?” amongst other questions. These suggest that pain reduction is a primary aim in arthritis management. The Chronic Pain Acceptance Questionnaire, however, is a very different beast. The Activity Engagement scale is about doing things that are valued (similar to the Valued Life Activity scale), while the  Willingness scale is about being willing to live life again despite pain – for example “I am getting on with the business of living no matter what my level of pain is.”; “It’s not necessary for me to control my pain in order to handle my life well.”.

While the authors argue that this study shows the value of self efficacy, stating “Active management promotes a sense of confidence, or self-efficacy, for dealing with pain that is associated with improved participation in daily activities and wellbeing.” I think the Arthritis Self-Efficacy Scale’s focus on controlling pain and other symptoms is incompatible with the constructs implied in the CPAQ. The ACT (Acceptance and Commitment Therapy) approach to pain is, as I’ve mentioned many times, a focus on engaging in valued activities irrespective of pain intensity – a more achievable goal for many than becoming confident to reduce pain as the ASES measures.

To their credit, the authors also indicate that men and women who continue to experience pain despite optimal medical treatment might benefit from strategies to increase their confidence to manage their own symptoms – but that a focus on pain control instead of participation despite pain is probably unhelpful. They go on to say that “by focusing on pain aceptance and activity engagement despite pain, self-management strategies may change the focus from pain control to a more flexible engagement in valued activities.” I couldn’t agree more – and I wish they’d used the Pain Self Efficacy Questionnaire instead of the ASES in this study. Maybe we need more discussion about appropriate measures in rheumatology research.

 

Ahlstrand, I., Vaz, S., Falkmer, T., Thyberg, I., & Björk, M. (2017). Self-efficacy and pain acceptance as mediators of the relationship between pain and performance of valued life activities in women and men with rheumatoid arthritis. Clinical Rehabilitation, 31(6), 824-834. doi:10.1177/0269215516646166

Katz PP, Morris A and Yelin EH. (2006). Prevalence and predictors of disability in valued life activities among individuals with rheumatoid arthritis. Annals of Rheumatology Diseases. 65: 763–769.

Lorig K, Chastain RL, Ung E, Shoor S and Holman HR. (1989). Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis & Rheumatism, 32(1): 37–44.

Wicksell RK, Olsson GL and Melin L. (2009). The Chronic Pain Acceptance Questionnaire (CPAQ)-further validation including a confirmatory factor analysis and a comparison with the Tampa Scale of Kinesiophobia. European Journal of Pain, 13: 760–768.

Wolfe F. (1989). A brief clinical health assessment instrument: CLINHAQ. Arthritis & Rheumatism,  32 (suppl): S9

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Using more than exercise for pain management


In the excitement and enthusiasm for exercise as a treatment for persistent pain, I wonder sometimes whether we’ve forgotten that “doing exercise” is a reasonably modern phenomenon. In fact, it’s something we’ve really only adopted since our lifestyle has moved from a fairly physically demanding one, to one more sedentary (Park, 1994). I also wonder if we’ve forgotten that exercise is intended to promote health – so we can do the things we really want or need to do. Remembering, of course, that some people find exercise actually exacerbates their pain (Lima, Abner & Sluka, 2017), and that many folks experience pain as an integral part of their exercise (think boxing, marathon running, even going to a gym – think of the pain of seeing That Much Lycra & Sweat).

While it’s become “exercise as medicine” in modern parlance (Pedersen & Saltin, 2015; Sallis, 2009; Sperling, Sadnesara, Kim & White, 2017), I wonder what would happen if we unpacked “exercise” and investigated what it is about exercise that makes it effective by comparison with, say, activities/occupations that incorporate whole body movement?

One of the factors that’s often omitted when investigating coping strategies or treatments, especially lifestyle/self management ones, is the context and meaning people give to the activity. Context is about the when, where and how, while meaning is the why. Whether the positives (meaning, and values people place on it) outweigh the negatives (let’s face it, the lycra and sweat and huffing and puffing does not inherently appeal) are factors that enhance (or not) adherence to exercise and activity. One positive is a sense of flow, or “an optimal subjective psychological state in which people are so involved in the activity that nothing else seems to matter; the experience itself is so enjoyable that people will do it even at great cost, for the sheer sake of doing it”(Csikzentmihalyi, 1990, p. 4). I can think of a few things I lose myself in – reading a good book; fishing; paddling across a lake; photography; silversmithing; gardening…

Robinson, Kennedy & Harmon (2012) examined the experiences of flow and the relationship between flow and pain intensity in a group of people living with persistent pain. Their aim was to establish whether flow was an “optimal” experience of people with chronic pain. Now the methodology they used was particularly interesting (because I am a nerd and because this is one technique for understanding daily lived experiences and the relationships between variables over time). They used electronic momentary assessment (also known as ecological momentary assessment) where participants were randomly signaled seven times a day for one week to respond to a question about flow. Computationally challenging (because 1447 measurement moments were taken – that’s a lot of data!), although not using linear hierarchical modeling (sigh), they analysed one-way between group analyses of variance (ANOVA) to explore differences in pain, concentration, self-esteem, motivation, positive affect and potency across four named states “flow, apathy, relaxation and anxiety”. We could argue about both the pre-determined states, and the analysis, but let’s begin by looking at their findings.

What did they find?

People in this study were 30 individuals with persistent pain attending a chronic pain clinic. Their ages ranged from 21 – 77 years, but mean age was 51, and there were 20 women and 10 men (remember that proportion). People had a range of pain problems, and their pain had been present for on average 68 months.

The contexts (environments) in which people were monitored were at home, or “elsewhere”, and, unsurprisingly, 71% were at home when they were asked to respond. Activities were divided into self-care, work and leisure (slightly less time in work than in leisure or self care respectively).  The purpose of the activities were necessity (35%), desire (40%), or “nothing else to do” (18%). And most people were doing these things with either alone or with family, with very small percentages with friends, colleagues or the general public.

Now we’d expect that people doing things they feel so wrapped up in that nothing else matters should experience lower pain – but no, although this was hypothesised, pain intensity scores during flow trended lower – but didn’t actually reach significance. When we add the findings that concentration, self-esteem, motivation, and potency mean scores were highest in the flow state and mean scores were lowest in the apathy and anxiety states, we can begin to wonder whether engaging in absorbing activities has a major effect on pain intensity – or whether the value placed on doing the activities is actually the most important feature for people with pain. Interestingly, people felt their flow experiences while outside the home: this happened rather less often than being in the home, where apathy was most present. So… doing something absorbing is more likely to occur away from home, while remaining at home is associated with more apathy and perhaps boredom. Finally, flow occurred in work settings more than elsewhere, suggesting yet again that work is a really important feature in the lives of all people, including people living with pain. Of course that depends on the kind of work people are doing…and the authors of this paper indicate that people with persistent pain in this study have few places in which they can do highly engaging activities, even including work.

What does this mean for exercise prescription?

Engaging people in something that holds little meaning, has little challenge and may not be in the slightest bit enjoyable is probably the best way to lose friends and have clients who are “noncompliant”. I think this study suggests that activities that provide challenge, stimulation, movement possibilities, the opportunity to demonstrate and develop skill – and that people find intrinsically lead to flow – might be another way to embrace the “movement is medicine” mantra. I wonder what would happen if we abolished “exercises” and thought about “movement opportunities”, and especially movement opportunities in which people living with pain might experience flow? I, for one, would love to see occupational therapists begin to examine flow experiences for people living with pain and embraced the creativity these experiences offer for the profession.

 

 

Csikszentmihalyi, M. (1990). Flow: The psychology of optimal experience. New York: Harper Collins.

Lima, L. V., Abner, T. S., & Sluka, K. A. (2017). Does exercise increase or decrease pain? Central mechanisms underlying these two phenomena. The Journal of physiology, 595(13), 4141-4150.

Park, R. (1994). A Decade of the Body: Researching and Writing About The History of Health, Fitness, Exercise and Sport, 1983-1993. Journal of Sport History, 21(1), 59-82. Retrieved from http://www.jstor.org/stable/43610596

Pedersen, B. K., & Saltin, B. (2015). Exercise as medicine–evidence for prescribing exercise as therapy in 26 different chronic diseases. Scandinavian journal of medicine & science in sports, 25(S3), 1-72.

Robinson, K., Kennedy, N., & Harmon, D. (2012). The flow experiences of people with chronic pain. OTJR: Occupation, Participation and Health, 32(3), 104-112.

Sallis, R. E. (2009). Exercise is medicine and physicians need to prescribe it!. British journal of sports medicine, 43(1), 3-4.

Sperling, L. S., Sandesara, P. B., Kim, J. H., & White, P. D. (2017). Exercise Is Medicine. JACC: Cardiovascular Imaging, 10(12).

One-session instruction in pacing doesn’t work


If there’s one form of coping strategy that occupational therapists love, it has to be the idea of “pacing”. Of course, the concept of pacing is vexed: we don’t have a good definition that’s widely accepted so it’s difficult to know whether we’re doin’ it right, but the idea of chunking down the amount of activity carried out at any one time is widely used as one way for people to sustain activity involvement despite pain and fatigue.

Today I’m looking at an old paper (from 2016) where people with osteoarthritis (hip or knee) were given instruction in time-based activity pacing by an occupational therapist. Surprisingly, this was a three-arm randomised controlled study, where 193 people were randomised into tailored activity pacing, general activity pacing, or usual care. I say surprisingly because RCT’s are fairly rare in occupational therapy research in persistent pain, and nigh on impossible to get funding for (sigh).

The definition of pacing used in this study was “the regulation of activity level and/or rate in the service of an adaptive goal or goals” (Nielson, Jensen, Karsdorp & Vlaeyen, 2013) although the form of pacing offered by clinicians working in this field is still unclear. In this study, the “tailored” group underwent seven days of monitoring using an accelerometer, the results were downloaded, analysed and an individualised pacing plan developed by the therapists. The plan was intended to highlight times when the person had high or low levels of activity (as compared with their own average, and averages drawn from previous studies of people with the same diagnosis), and to point out associations between these activity levels and self reported symptoms. Participants were then provided with ideas for changing their activity levels to optimise their ability to sustain activity and minimise symptom fluctuation.

In the “general” pacing group, participants were given the same sorts of instructions, but instead of using objective data from their own activities, they were asked to recall their past situations and symptoms, and broad guidelines were given instead. Both groups had three sessions with comparable educational material.

In the usual care group, participants were instructed to carry on with their usual approach to activity, and were assessed at baseline, 10 weeks and six months, using the same assessment process as those in the experimental arms.

Outcome measures were fatigue, measured by the Brief Fatigue Inventory (Mendoza, Wang, Cleeland, Morrissey, Johnson, Wendt & Huber, 1999); and the 8-item PROMIS fatigue short form. Pain severity was measured using the pain subscale drawn from the WOMAC. Additional measures included the 6-minute walk test; the WOMAC physical disability short form scale; the Arthritis Self-Efficacy Scale; the CES-D depression measure, and various demographic and disease measures (joint space narrowing, osteophyte formation etc). Finally, to determine activity pacing adherence, the pacing subscale of the Chronic Pain Coping Inventory was used (Jensen, Turner, Romano & Strom, 1995).

What did they find?

Well, you may have guessed from the title of this post: although people given the pacing intervention said they benefited, and they changed the way they carried out daily activities, the results showed that although they did so, the only significant change on measures taken was for WOMAC pain, in which the people in the general pacing group reduced their pain over the first 10 weeks. BUT participants in the usual care group reduced their pain over six months!

What does this mean?

Should we all throw out the idea of paced activities? Should occupational therapists despair and go back to the drawing board?

I don’t think so, and here’s why.

I think targeting pain intensity is possibly the wrong outcome in a study like this. We already have a vast collection of studies showing that pain intensity and disability are not well-correlated. Pain intensity alone isn’t the main reason people stop doing things when they have osteoarthritis – it’s often fear that the pain signifies “bone on bone” and “wear and tear” and “cartilage disintegration” (Hendry, Williams, Markland, Wilkinson & Maddison, 2006). And we also know that people with osteoarthritis develop their own self-management strategies and that these focus on maintaining everyday social roles and valued activities (Morden, Jinks, Bie Nio, 2011). Values seem to help people engage in demanding activities, whether the demands are because the activities hurt, or they’re physically demanding, or they’re not our favourite thing to do (think vacuum cleaning when Mum is coming to visit!) (McCracken & Keogh, 2009).

Perhaps, by drawing attention to both activities and pain intensity, the therapists in this study created a situation where pain intensity became more salient to the participants. Perhaps, too, aiming to reduce pain doesn’t take into account the other values people may hold. For example, even if I’m sore I’ll rush around cleaning if I know my parents (or other visitors) are coming to visit. My pain intensity matters less than feeling embarrassed at an untidy house.

I think we need to revisit the aims of pacing activity. To me there are several reasons for having the strategy available when/if needed:

  1. If I want to work consistently at something that’s going to take a week or two to do. Example: I recently laid bricks under my cherry tree. I did this over three weekends because digging into really hard soil, heaving bags of sand, and placing the bricks is something that increases my pain quite a lot. Because I have other things to achieve over the weekend and during the week, and laying the bricks wasn’t a top priority, I chose to do about a metre square each day of each weekend.
  2. If I’m aiming to do something quite demanding – like go on a two-day tramp (hike). I’ll try to build my activity tolerance over similar terrain with similar loads in advance of the actual trip.
  3. If I really loathe the job and would otherwise avoid it… For example, vacuuming and mopping my floors. I’ll do a room at a time because I seriously do not enjoy housework!

Looking at activity management in isolation from what a person believes is important makes this strategy pretty unpalatable. Combine it with values, and we’re starting to see something that can be employed flexibly and when it’s workable.

 

Hendry, M., Williams, N. H., Markland, D., Wilkinson, C., & Maddison, P. (2006). Why should we exercise when our knees hurt? A qualitative study of primary care patients with osteoarthritis of the knee. Family Practice, 23(5), 558-567.

Jensen MP, Turner JA, Romano JM, Strom SE. (1995). The Chronic Pain Coping Inventory: development and preliminary validation. PAIN ;60, 203–16.

McCracken, L. M., & Keogh, E. (2009). Acceptance, mindfulness, and values-based action may counteract fear and avoidance of emotions in chronic pain: An analysis of anxiety sensitivity. The Journal of Pain, 10(4), 408-415. doi:http://dx.doi.org/10.1016/j.jpain.2008.09.015

Mendoza TR, Wang XS, Cleeland CS, Morrissey M, Johnson BA, Wendt JK, Huber SL. (1999). The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory. Cancer 85, 1186–96.

Murphy, S. L., Kratz, A. L., Kidwell, K., Lyden, A. K., Geisser, M. E., & Williams, D. A. (2016). Brief time-based activity pacing instruction as a singular behavioral intervention was not effective in participants with symptomatic osteoarthritis. Pain, 157(7), 1563-1573.

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.

Nielson WR, Jensen MP, Karsdorp PA, Vlaeyen JW. (2013). Activity pacing in chronic pain: concepts, evidence, and future directions. Clinical Journal of Pain, 29, 461–8.

Persson, D., Andersson, I., & Eklund, M. (2011). Defying aches and revaluating daily doing: Occupational perspectives on adjusting to chronic pain. Scandinavian Journal of Occupational Therapy, 18(3), 188-197. doi:http://dx.doi.org/10.3109/11038128.2010.509810

Minding your body: Interoceptive awareness, mindfulness and living well


We all grow up with a pretty good idea of what our body feels like; what normal is. It’s one of the first “tasks” of infancy, it seems, to work out what is me and what is not. When people experience a disturbance to the way their body moves or feels, it can take some time to get used to that new way of being. In pregnancy, where the body takes on a different shape and dimension, it’s not uncommon to bump into things because the new shape hasn’t yet sunk in!

This awareness of “what my body feels like” is called interoceptive awareness (IA), and I was intrigued to read this paper by Hanley, Mehling and Garland (2017) in which IA is examined in relation to dispositional mindfulness (DM). DM is thought to be the innate tendency to notice without judging or automatically reacting to what is going on. IA may be extremely sensitive in some people – for example, people with health anxiety might notice their sweaty palms and heart palpitations and then worry that they’re about to have a heart attack, or the same symptoms in someone with social anxiety might be experienced as indications to LEAVE RIGHT NOW because EVERYONE is looking at ME.

I’m not sure of research into IA in people with persistent pain, although I am positive it’s something that has been studied (see Mehling, Daubenmier, Price, Acree, Bartmess & Stewart, 2013). As a result, in my conclusions I’m going to draw from my experience working with those living with persistent pain, and extrapolate wildly!

This study aimed to establish the relationship between various items on two questionnaires used to measure IA and DM: the MAIA (Multidimensional Assessment of Interoceptive Awareness), and the FFMQ (Five Facet Mindfulness Questionnaire). The paper itself discusses the first measure as empirically derived and confirmed by focus groups, and having associations with less trait anxiety, emotional susceptibility and depression – in other words, high scores on this measure (awareness of body sensations and judging those sensations) are associated with important factors influencing our wellbeing. The second measure is described as “one of the most commonly used self-report measures of DM”. It consists of five scales thought to measure important aspects of mindfulness (observing, not reacting and acting with awareness).

Along with these two measures, the authors examined wellbeing, which essentially was defined as a tendency to accept oneself, have a purpose, manage the environment, develop good relationships, continue to grow as a person and be independent and autonomous. We could probably argue about these dimensions in view of what may be a cultural component (autonomy may not be highly favoured in some communities).

Recruitment was via mTurk, Amazon’s crowdsourcing website. As a result participants possibly don’t represent the kinds of people I would see in clinical practice. And half of the 478 participants were excluded because people didn’t complete all the questionnaires. I could quibble about this sample, so bear that in mind when you consider the results.

Results

Turning to the results, the first finding was a good correlation between all three questionnaires, with the FFMQ more strongly correlated with psychological wellbeing than the MAIA. But these researchers wanted more! So they carried out canonical correlation analysis, which is used to correlate the latent variables present in measurement instruments. It’s complicated, but what it can tell us is how underlying aspects of two unrelated measures might fit together. In this instance, the researchers found that two of the FFMQ (non-reacting and observing) were related to six of the eight MAIA factors (attention regulation, self-regulation, trusting, emotional awareness, body listening and noticing). They also found that FFMQ ‘non-judging’ and ‘acting with awareness’ were associated with MAIA ‘not worrying’ subscale.

What does this tell us? Well, to me it’s about grouping somewhat-related items together from two instruments to work out their contribution to something else. The authors thought so too, and therefore completed a further analysis (told you it was complicated!), to look at a two-step hierarchical multiple regression where the two sets of scales were entered into equations to see how much each contributed to the psychological wellbeing score. Whew!

What they found was interesting, and why I’m fascinated by this study despite its shortcomings.

What can we do with this info?

Being mindfully observant and non-reactive seems to be associated with a person’s ability to notice and control attention to what’s going on in the body. Makes sense to me – knowing what goes on in your body but being able to flexibly decide how much to be bothered about, and what you’re going to do about those sensations will make a difference to how well you can cope with things like fatigue, hunger, the need to change body position or to sustain a position when you’re focusing on something else – like hunting!

Apparently, being able to attend to body sensations is also part of regulating your emotional state, and if you can do this, you’ll generally experience your body as a safe and “trustworthy” place. And if you can do this when your body doesn’t feel so good yet still remain calm and accepting, this is a good thing. In the final analysis, these authors called the first cluster of statements “Regulatory awareness” – being aware of your body and regulating how you respond to it. The second cluster related more with non-judging and acting with awareness, so the authors called this “Acceptance in action”.

For people living with persistent pain, where the body often does not feel trustworthy and there’s an increased need to “ignore” or “let go” or “not judge” painful areas, it seems that one of the most important skills to learn is how to self regulate responses to IA. To take the time to notice all the body (not ignore the sore bits, nor obsess about the sore bits). This doesn’t come easily because I think for most of us, we’ve learned we need to notice pain – after all, ordinarily it’s helpful! The second part is to accept in action – in other words discriminating between unpleasant body sensations are should be worried about, and those not needing our attention is an adaptive skill. Perhaps mindfulness gives us better capabilities to discriminate between what needs to be taken into account, and what does not.

Interestingly, the least strongly associated response items were related to using words to describe what goes on in the body. For me this suggests experiential practices might be more useful to help people develop these two skills than simply talking about it. And suggests that maybe we could use meditative movement practices as a good way to develop these skills.

R.A. Baer, G.T. Smith, J. Hopkins, J. Krietemeyer, L. Toney, (2006) Using self-report assessment methods to explore facets of mindfulness, Assessment 13 27–45.

Hanley, A. W., Mehling, W. E., & Garland, E. L. (2017). Holding the body in mind: Interoceptive awareness, dispositional mindfulness and psychological well-being. Journal of Psychosomatic Research, 99, 13-20. doi:https://doi.org/10.1016/j.jpsychores.2017.05.014

W.E. Mehling, J. Daubenmier, C.J. Price, M. Acree, E. Bartmess, A.L. Stewart, (2013). Self-reported interoceptive awareness in primary care patients with past or current low back pain, Journal of Pain Research. 6

W.E. Mehling, C. Price, J.J. Daubenmier, M. Acree, E. Bartmess, A. Stewart, (2012) The multidimensional assessment of interoceptive awareness (MAIA), PLoS One 7  e48230.

Manage pain – or aim to cure? Why I’m committed to pain management


Prominent researchers, clinicians and commentators seem to suggest that aiming to help people live with their pain is aiming too low. That pain cure or at least reduction is The Thing To Do. It’s certainly got a bit of a ring to it – “I can help get rid of your pain” has a sex appeal that “I can help you live with your pain” doesn’t have. And I can recognise the appeal. Persistent pain can be a scourge for those who live with it; it can eat away at every part of life. Imagine waking up one day to find NO PAIN! Excited much?

So why do I keep hammering on about this not very glamorous, certainly very challenging and at times unrewarding area of practice?

Here’s the thing. Persistent pain is extremely common. Not only is low back pain responsible for the most years lived with disability globally (Hoy, Bain, Williams, March, Brooks, Blyth, Woolf, Vos & Buchbinder, 2012), painful disorders like osteoarthritis increase with an aging population, and post-surgical pain is a problem for ~ 12% of people undergoing hip replacement, between 20 – 50% women undergoing mastectomy, and we all recognise the pain after limb amputation (between 50 – 80%) (Reddi & Curran, 2014). In New Zealand one person in five experiences persistent pain that goes beyond three months…

And our treatments, whether they be pharmaceuticals, procedures, surgeries or even groovy new things like mirror therapy or graded motor imagery don’t guarantee complete pain relief for 100% of patients. In fact, each new wave of therapy provides some pain relief for some people some of the time. And we shouldn’t be completely surprised about this because our nociceptive system is extraordinarily complex – and needs to be active because without pain we’re not likely to live long…or prosper. In fact, I’ll go out on a limb here and suggest that our nociceptive system with associated thoughts, emotions and behavioural responses has built-in redundancy simply because it’s there to protect us against potential harm. And every body system has at least one disorder/disease/dysfunction, so why would we think our “pain” system is immune?

So why do I spend time learning about management when I could be focused on reducing pain?

Well one reason is my clinical orientation. I’m an occupational therapist at heart (true, warped by contact with psychologists and physiotherapists), but essentially I’m about helping people do the things they need and want to do in daily life. My tools of trade are first of all focused on helping people work out the occupations (activities) that make them feel like themselves and then helping them do those things – and secondarily, and as a result of this focus, on helping people deal with their pain experience. Sometimes the latter involves helping people develop awareness of exactly how much or how little of their body and life is taken up with pain, helping them develop “wiggle room” so they can feel they have a little more space to be who they are, helping them find new ways to do those occupations that make them feel like themselves so the pain doesn’t take up quite so much room in their sense of self. Sometimes I do focus on obvious ways that people respond to their experience that may actually be making that experience much more unpleasant than it needs to be.

Another reason for me is that with a primary focus on pain reduction, we can forget the reason people want pain reduced – which is to go on and live life. And when we’re unsuccessful at reducing pain – where do those people go for help? What does it feel like to seem to “fail” a treatment again? and again? Who helps those people have good quality of life when they feel demoralised, the treatment options are exhausted and the clinicians who so desperately want to help them have no more ideas?

And as I mentioned above – there are no absolute cures for most forms of persistent pain. Nothing in my reading of the research around the world suggests that researchers have hit upon a jackpot and found a way to eliminate persistent pain 100%. What that means is there are likely to be people who will never experience complete relief from their pain. And others for whom the treatment is unavailable because of cost, side effects, intrusion on life, or because the treatment violates their values.

And because there are people who need to live with persistent pain until we have a “universal cure”, researchers and clinicians still need to refine and innovate the pain management strategies that will need to be used.

I’m not the person to make the decision about whether pain reduction or pain management is the best option. That’s not my job as a clinician or a researcher – I’m there to help people weigh up the costs and the benefits of treatments, and examine how best we can help those who can’t get rid of their pain. The thing is: if clinicians don’t know that there are viable ways of living well with pain (or they reject these as inferior or second class in comparison with pain reduction or elimination) how will they support their patients to make their own decisions? Or will they neglect to offer the approaches they don’t know about? And what kind of a choice is that?

 

 

 

Hoy, D., C. Bain, G. Williams, L. March, P. Brooks, F. Blyth, A. Woolf, T. Vos and R. Buchbinder (2012). A systematic review of the global prevalence of low back pain. Arthritis & Rheumatology 64(6): 2028-2037.

Reddi, D., & Curran, N. (2014). Chronic pain after surgery: pathophysiology, risk factors and prevention. Postgraduate medical journal, 90(1062), 222-227.

Pacing, pacing, pacing – good, bad, or…?


There’s nothing that pain peeps seem to like more than a good dispute over whether something is good, or not so good for treatment. Pacing is a perennial topic for this kind of vexed discussion. Advocates say “But look at what it does for me! I can do more without getting my pain out of control!” Those not quite as convinced say “But look at how little you’re doing, and you keep letting pain get in the way of what you really want to do!”

Defining and measuring pacing is just as vexed as deciding whether it’s a good thing or not. Pacing isn’t well-defined and there are several definitions to hand. The paper I’m discussing today identifies five themes of pacing, and based this on Delphi technique followed by a psychometric study to ensure the items make sense. The three aspects of pacing are: activity adjustment, activity consistency, activity progression, activity planning and activity acceptance.

Activity adjustment is about adjusting how we go about doing things – approaches like breaking a task down, using rest breaks, and alternating activities.

Activity consistency is about undertaking a consistent amount of activity each day – the “do no more on good days, do no less on bad” approach.

Activity progression refers to gradually increasing activities that have been avoided in the past, as well as gradually increasing the time spent on each task.

Activity planning involves setting activity levels, setting time limits to avoid “over-doing”, and setting meaningful goals.

Finally, activity acceptance is about accepting what can be done, and what can’t, setting realistic goals, adapting targets, and being able to say no to some activities.

In terms of covering the scope of “activity pacing”, I think these five factors look pretty good – capturing both the lay sense of pacing, as well as some of the ideas about consistency and progression.

On to the study itself, conducted by Deborah Antcliffe, Malcolm Campbell, Steve Woby and Philip Keeley from Manchester and Huddersfield.  Participants in this study were attending physiotherapy through the NHS (yay for socialised healthcare! – Let’s keep that way, shall we?!), and had diagnoses of chronic low back pain, chronic widespread pain, fibromyalgia and chronic fatigue syndrome.  They completed the questionnaire either while on a waiting list, or after completing treatment, as a way to generalise findings – so this isn’t a measure of change (at least, not at this point).

Along with the APQ (the Activity Pacing Questionnaire – original name huh?!), participants completed a numeric rating scale, the Chalder Fatigue Questionnaire, Hospital Anxiety and Depression Scale, Pain Anxiety Symptoms Scale, and the Short-Form 12.  Some lovely number crunching was used – hierarchicial (sequential) multiple regression models with five separate multiple regression models of the symptoms of current pain, physical fatigue, depression, avoidance and physical functioning.

One of the confusing problems with  measuring pacing is that people may vary their use of different forms of pacing, depending on their symptoms at the time. So in this analysis, factors like pain and fatigue could be a dependent variable (ie I use pacing techniques and feel less fatigued and I’m in less pain), or they could be a confounding variable (ie I feel sore and tired, so I use these techniques).  Needless to say, the statistical analysis is complex and I don’t have a hope of explaining it!

The results, however, are very intriguing. 257 people completed the questionnaires in full, from an overall number of 311 participants. About half had completed their physiotherapy, while the other half had yet to start (ie waiting list). As usual, more people with low back pain than other conditions, and 2/3 were female. On first pass through the data, to establish correlations for inclusion in the regression  models (did your eyes just glaze over?!), the findings showed activity adjustment was associated with higher levels of current pain, depression, and avoidance, and lower levels of physical function. Activity consistency was associated with lower levels of physical fatigue, depression, and avoidance. and higher levels of physical function. Activity progression was associated with higher levels of current pain. Activity planning was significantly associated with lower levels of physical fatigue, and activity acceptance was associated with higher levels of current pain and avoidance.

Then things changed. As these researchers began adjusting for other independent variables, the patterns changed – Activity adjustment was significantly associated with higher levels of depression and avoidance and lower levels of physical function as before, but after adjustment, the association with pain was no longer significant; instead, it was significantly related to higher levels of physical fatigue. Activity consistency remained significantly associated with lower levels of physical fatigue, depression, and avoidance, and higher levels of physical function, but became significantly associated with lower levels of current pain. There were now no significant partial correlations between activity progression and any of the symptoms, whereas activity planning retained its significant association with lower levels of physical fatigue. Activity acceptance lost its significant association with current pain but retained its significant association with higher levels of avoidance.

Ok, Ok, what does that all mean? Firstly – engrave this on your forehead “Correlation does not mean causation”! What seems to be the case is that different themes or forms of pacing are associated with different symptoms. The items associated with adjusting or limiting activities were generally associated with more symptoms. So the more pain and fatigue a person experiences, it seems the more likely it is for them to choose to limit or adjust how much they do. Pacing themes involving consistency and planning were associated with improved symptoms. Using path analysis, the authors identify that activity adjustment and activity consistency play the most important parts in the relationship  between pacing and symptoms.

The take-home messages from this study are these:

  • We can’t define pacing as a unidimensional process – it seems clear to me that different people describe pacing in different ways, and that this messy definitional complexity makes current studies into the use of pacing rather challenging.
  • It seems that avoiding activities, reducing activities in response to pain or fatigue – the idea of an “envelope” of time/energy that needs to be managed to get through the day – is associated with more severe symptoms. Whether people choose this approach only when their symptoms are severe, and revert to activity adjustment and consistency when in less discomfort is not clear (correlation does not equal causation!)
  • Planning activities seems to be associated with some improved symptoms and the authors suggest that planning activities in advance might help people avoid a “boom and bust” scenario. giving a better shape to the day, a greater sense of control and achievement. Then again, it could be that when people feel better, they’re more able to plan their day, and again this study doesn’t help us much.
  • Activity progression, where the overall amount of activity gradually increases over time, wasn’t associated with either more or less pain and fatigue. I think it’s time we had a good look at whether progression helps people – or doesn’t. Rehabilitation philosophy suggests that it “should” – but do we know?
  • And finally, activity consistency was the aspect of pacing that was associated with improved symptoms – and this is certainly something I’ve found true in my own pain management.

The authors maintain that describing pacing as a multi-faceted construct is the only way forward – clearly we’re not going to agree that “pacing is X” when five different forms of pacing were derived from the Delphi study on which the APQ is based. It seems to me that we could benefit from applying this kind of nuanced definition in more areas than just pacing in pain management!

Antcliff, D., Campbell, M., Woby, S., & Keeley, P. (2017). Activity pacing is associated with better and worse symptoms for patients with long-term conditions. The Clinical Journal of Pain, 33(3), 205-214. doi:10.1097/ajp.0000000000000401

Targeting the people who need it most


A couple of things came to mind today as I thought about this post: the first was an article in the local newspaper about a man complaining that the government is “promoting disability” because he couldn’t get surgery for a disc prolapse – and the pain was affecting his ability to work. The second was how to direct the right treatment at the right person at the right time – and how we can be derailed by either wholesale over-servicing “everyone needs treatment X”, or by overburdening people with assessment just to give a fairly basic treatment.

Now with the first man, I don’t know his clinical situation – what I do know is that there are many people every day who must learn to live with their pain because there simply is not an effective treatment of any kind, and that amongst these people are those go on to live wonderful lives despite their pain. I wonder if this man has ever been offered comprehensive self management for while he waits for his surgery. Whether the government could spread some funding away from surgery as the primary option for such pain problems – and instead provide better funding for the wider range of approaches offered through the interdisciplinary pain management centres (approaches which include injection procedures, physiotherapy, psychology, occupational therapy and medications). When there is an effective treatment (and this is arguable in the case of disc prolapse – in fact, it’s difficult to know whether even MRI imaging can give a clear indication of who might respond best to what treatment (Steffens, Hancock, Pereira et al, 2016), we should be able to give it, provided it fits within our country’s health budget. Ahh – that’s the problem, isn’t it… expensive treatments mean fewer people can get basic treatment. And with lumbar disc prolapse, the evidence for surgery is less favourable than many people recognise (Deyo & Mirza, 2016) – they state:

“Patients with severe or progressive neurologic deficits require a referral for surgery. Elective surgery is an option for patients with congruent clinical and MRI findings and a condition that does not improve within 6 weeks. The major benefit of surgery is relief of sciatica that is faster than relief with conservative treatment, but results of early surgical and prolonged conservative treatment tend to be similar at 1 year of follow-up. Patients and physicians should share in decision making.”

So here we have a person with lots of pain, experiencing a great deal of distress, and reducing his work because of pain and disability. My question now (and not for this person in particular) is whether being distressed is equivalent to needing psychological help. How would we know?

There’s been a tendency in pain management to bring in psychologists to help people in this kind of situation. Sometimes people being referred for such help feel aggrieved: “My problem isn’t psychological!” they say, and they’re quite correct. But having a problem that isn’t psychological doesn’t mean some psychological help can’t be useful – unless by doing so, we deny people who have serious psychological health problems from being seen. And in New Zealand there are incredible shortages in mental health service delivery – in Christchurch alone we’ve had an increase in use of mental health services of more than 60% over the past six years since the massive 2010/2011 earthquakes (The Press).

People living with persistent pain often do experience depression, anxiety, poor sleep, challenges to relationships and in general, feeling demoralised and frustrated.  In a recent study of those attending a specialist pain management centre, 60% met criteria for “probable depression” while 33.8% met criteria for “severe depression” (Rayner, Hotopf, Petkova, Matcham, Simpson & McCracken, 2016). BUT that’s 40% who don’t – and it’s my belief that providing psychological services to this group is allocating resources away from people who really need it.

So, what do we do? Well one step forward might be to use effective screening tools to establish who has a serious psychological need and who may respond just as well to reactivation and return to usual activities with the support of the less expensive (but no less skilled) occupational therapy and physiotherapy teams. Vaegter, Handberg, & Kent (in press) have just published a study showing that brief psychological screening measures can be useful for ruling out those with psychological conditions. While we would never use just a questionnaire for diagnosis, when combined with clinical assessment and interview, brief forms of questionnaires can be really helpful for establishing risk and areas for further assessment. This study provides some support for using single item questions to identify those who need more in-depth assessment, and those who don’t need this level of attention. I like that! The idea that we can triage those who probably don’t need the whole toolbox hurled at them is a great idea.

Perhaps the New Zealand politicians, as they begin the downhill towards general elections at the end of the year, could be asked to thoughtfully consider rational distribution of healthcare, and a greater emphasis on targeted use of allied health and expensive surgery.

 

Deyo, R. A., & Mirza, S. K. (2016). Herniated Lumbar Intervertebral Disk. New England Journal of Medicine, 374(18), 1763-1772.

Hahne, A. J., Ford, J. J., & McMeeken, J. M. (2010). Conservative management of lumbar disc herniation with associated radiculopathy: A systematic review. Spine, 35(11), E488-504.

Koffel, E., Kroenke, K., Bair, M. J., Leverty, D., Polusny, M. A., & Krebs, E. E. (2016). The bidirectional relationship between sleep complaints and pain: Analysis of data from a randomized trial. Health Psychology, 35(1), 41-49.

Rayner L, Hotopf M, Petkova H, Matcham F, Simpson A, McCracken LM. Depression in patients with chronic pain attending a specialised pain treatment centre: prevalence and impact on health care costs. Pain. 2016;157(7):1472-1479. doi:10.1097/j.pain.0000000000000542

Steffens, D., Hancock, M.J., Pereira, L.S. et al.(2016) Do MRI findings identify patients with low back pain or sciatica who respond better to particular interventions? A systematic review. European Spine Journal 25: 1170. doi:10.1007/s00586-015-4195-4

Vaegter, H. B. P., Handberg, G. M. D., & Kent, P. P. Brief psychological screening questions can be useful for ruling out psychological conditions in patients with chronic pain. Clinical Journal of Pain.

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.

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.

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.