Self-care

No, not the Instagram “self-care” of floofy slippers and a glass of wine, or an excuse to indulge in chocolate. No, I’m talking about the gritty self-care that all of us humans need to do, only some of us need to it more regularly or we’ll experience Consequences.

Self-care for people living with pain is no luxury, and it does (occasionally) mean walking away from something enjoyable, setting boundaries on demands for time and energy, AND it means many other things too.

I’ll talk about my own self-care needs because I can’t talk authentically about anyone else. Most of you will know I live with fibromyalgia, and that I’m pretty happy with my lifestyle and dealing with pain. Mostly it’s just a nuisance that I live alongside, and make room for. Sometimes it’s a PITA, and over the last year it’s been more of that and less of the “just a nuisance”.

My fibromyalgia involves widespread body pain (currently neck/shoulder but randomly goes to other places – maybe for a holiday? Who would know!). I also experience fatigue. In fact, the pain is nothing to bother me because I know it’s not a sign I’ve harmed myself – it’s the fatigue that is a killer. Probably the most difficult thing to deal with.

So when I went to a conference, and had a few late nights it didn’t surprise me to feel exhausted. I’m lucky in that I can take a couple of days off for some downtime, and I slept and now I’m pretty much back to normal. Except that it’s a short week with Easter coming up, and I have a whole day out because of a procedure – and I’m teaching Thursday night while also having some other deadlines coming up.

Lurching from frantically catching up to crashing is called “boom and bust” in our persistent pain language. According to conventional pain management wisdom (based on books like Manage Your Pain by Prof Michael Nicholas) pacing is The Way to Go. And there’s some merit in the idea of being consistent in what to expect from yourself, building up from a baseline to what works for you in your life context, to reduce the number of times you have to apologise for not being able to do something because you’ve either flared or you’re fatigued.

The problem with pacing is that we still have little agreement on what we mean by the word (is it gradually increasing activity levels? is it stopping before we flare up? is it planning each moment of the day, breaking each task into 10 – 20 minutes with a break in between? is it about using time instead of pain/fatigue as the guide for what you do?). There’s even less evidence to support pacing as a strategy – few randomised trials of pacing and studies have shown associations between pacing and avoidance. Yet it remains one of the more popular and widely-endorsed strategies for living well with persistent pain.

Coming back to self-care, one of the issues for me is to understand how I get into the situation where my fatigue and pain begins to interfere with my plans. Is it my planning that’s awry? Should I say no more often? Should I ask for help more often? Am I bad for pushing myself? Am I over-reaching myself, spreading myself too thin?

And even as I ask these questions of myself, I feel my mind judging me. After all, I should know better! I’ve been living with pain most of my life. I teach people about pain. I’ve worked clinically. Seriously I ought not to do this to myself. I should be perfect!!

Well, as anyone who knows me is perfectly aware: I am not perfect. And I mess up. I did last week when I completely forgot an appointment with someone because my mind was fried.

Here’s the thing though. This amount of self-analysis, of questioning, of planning, of organising around something that I never asked for, is what anyone with persistent pain goes through. And the often-glib “go exercise” or “just pace” or “let’s ignore pain and pretend it’s not a thing” often fails to touch the constant demands that living with a chronic/ongoing health problem poses. The negative and critical mind is prone to sniping at the “who” I am, while onlookers, clinicians in particular, might not even be aware of just how brutal and energy-sapping this process is. Every. Single. Day.

I do not have a glib answer to how best to live well with pain, and as you can tell I’m still learning even 35 years down the track! I do know I’m determined, and that drawing on values and being flexible about how I do what matters in my life has meant I’ve stayed working (even in a demanding job), kept on playing (creative pursuits are like oil on dry skin), learned to keep my eyes on the prize and not sweat the small stuff…

This post is a plea to health professionals working with people who are in the early stages of living with persisting pain: don’t add things to a person’s life without thinking about the constant juggle the person will need to do often for the rest of their life. Don’t make up another list of exercises, or make suggestions about another technique to add in to their already busy daily life without asking yourself “Could I do this every day? In the presence of ongoing pain?” Ask yourself, too, whether you’re implying that this person is “doing it wrong.” Think hard about all the things each person needs and wants to do in their life – if you’re going to suggest adding yet another thing into their day, consider what this person might need to abandon to fit it in, think about when and where and how this person can do what you’re suggesting.

When we’re clinicians, we can be prone to suggesting that people with pain “aren’t motivated.” I reject this – motivation isn’t a trait, or a quantity we’re given or not given. Motivation is about importance, and confidence. And for so many people with pain, confidence is very very low. Saying no to things requires confidence. And sometimes saying no is the hardest thing.

Self-care. It’s a life-long commitment to being vigilant about the choices I make every day, because the consequences of not caring for myself can be tough to swallow. And yet it’s also OK to mess up and to be with that flare or fatigue, and remember what matters in life.

Pacing, pacing, pacing…

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

Vexed definitions

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

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

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

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

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

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

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

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

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

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

Cutting to the chase, what did they find?

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

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

So where does this leave us?

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

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

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

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

On the problem of coping

Coping. Lots of meanings, lots of negative connotations, used widely by health professionals, rejected by others (why would you need coping skills if you can get rid of your pain?).

I’ll bet one of the problems with coping is that we don’t really know what we’re defining. Is coping the result of dealing with something? Or is it the process of dealing with something? Or is it the range of strategies used when dealing with something? What if, after having dealt with the ‘something’ that shook our world, the world doesn’t go back to the way it was? What if ‘coping’ becomes a way of living?

The reason this topic came up for me is having just written a review for Paincloud on activity patterns (Cane, Nielson & Mazmanian, 2018), I got to thinking about the way we conceptualise ‘problems’ in life.  It’s like we imagine that life is going along its merry way, then all of a sudden and out of the blue – WHAM! An event happens to stop us in our tracks and we have to deal with it.

But let’s step back for a minute: how many of us have a well-ordered, bimbling existence where life is going along without any hiccoughs?!

Back to coping. The concept of coping is defined by Lazarus and Folkman (1980) as “the cognitive and behavioral efforts made to master, tolerate, or reduce external and internal demands and conflicts among them.” It’s identified as a transactional process and one that occurs within a context where the person has both resources and constraints, and a direction in which he or she wants to go.

By contrast, if we look at the research into coping in people with persistent pain, most of the attention is on the “what the person does” and the resources he or she has (see for example Rosenstiel & Keefe, 1983; Jensen, Turner, Romano & Karoly, 1991; Snow-Turkey, Norris & Tan, 1996; and much more recently, measures of coping by Sleijswer-Koehorst, Bijker, Cuijpers, Scholten-Peeters & Coppieters, in press). There are some studies exploring the goals set by the person (Schmitz, Saile & Nilges, 1996), but few studies examine the context in which the person is coping – nor what happens once the coping efforts are successful.

Measuring coping falls into three main buckets: the repertoire (how many strategies do you have?); the variation (which ones do you use and do they match the demands?); and the fitness approach (the choice of strategy depends on the way a person appraises the situation) (Kato, 2012). Out of these three, Kato chose to develop a measure of coping flexibility. Coping flexibility refers to “the ability to discontinue an ineffective coping strategy, and produce and implement an alternative coping strategy”. The Coping Flexibility Scale aims to measure this ability, based on the idea that by appraising the situation, implementing a strategy, then appraising the effectiveness of that strategy and applying a new one, the person is more effective at dealing with the challenge.

One of the most popular measures of coping for pain is the 14-item Coping Strategies Questionnaire (Riddle & Jensen, 2013). It suggests different ways of coping, some of which are seen as helpful, while others are not. Oddly enough, and why I started writing this blog, it doesn’t include the way we go about daily activities – activity patterns. In the study by Cane, Nielson & Maxmanian (2018), two main forms of activity pattern were found: avoidant-pacing, and  overdoing (as measured by the Patterns of Activity Measure – Pain). The avoidant-pacing group used pacing for daily activity management, but did so with the intention of avoiding flare-ups. The overdoing group just did a lot of activity. After treatment, some people moved group – from the two original groups, two more emerged: avoidant-pacing, pacing, mixed and overdoing. The pacing group basically did what everyone says is a great way to manage pain: picking out the right level of activity and sticking with it, using a quote-based approach. The definition used in this study was “… preplanned strategy that involved breaking activities into smaller parts, alternating periods of activity and rest (or an alternate activity), and using predetermined time intervals (or quotas) to establish when to stop an activity. The description of activity pacing provided to patients identified the goal or function of activity pacing as facilitating the completion of activities and ultimately increasing overall activity and functioning.”

As usual there are vulnerabilities in the way this study was conducted, and the main one for me is the follow-up period is non-existent. The reason I worry about this is that in my daily life, as I’m sure happens in many of yours, my pattern of activity varies wildly from week to week. Some weeks, like the weeks just before I headed to Sunderland for Paincloud, and the weeks just after I got back, were incredibly busy. I pushed myself to get things done because there were a heap of deadlines! This week I plan to have some down-time – this afternoon, in fact, because I want to play with some silversmithing.

And it occurred to me that we expect such a lot from the people we work with who live with pain. We ask all sorts of intrusive questions about daily life and we expect people to be able to recall what they did, why they did it, and to make changes and be consistent about these until we’re satisfied they’re “coping”.

But what if coping is actually the way we live our lives? What if coping involves all the myriad self-evaluative activities we all do – like, how hungry, tired, irritable, frustrated, rushed, achey, restless, enthusiastic, apologetic we feel – and endlessly and constantly adjusting the actions and behaviours we do so we can do what, for a moment or two, we think is The Most Important thing for now.

Life is a constant flowing forward. It’s a stream, an avalanche, a train going one way only. We can’t stop the world to get off. And once we’ve “coped” with something, life doesn’t return to “normal” because we’re different. Maybe our priorities change, or our circumstances have, or we have a new insight into what we want, or we work out the goal we had is more important than we thought. What if we are expecting the people who live with pain to do something we’re not even capable of?

I suppose part of my musing is related to mindfulness. Mindfulness involves continually returning to what I want to pay attention to, and doing so without judgement, and also observing without judgement. But it always involves coming back to what I intend to attend to. On and on and on. And the lovely thing about it is that it’s endlessly gentle and forgiving. Let go of the things I forgot to do, or the rushing towards what needs doing. I wonder what would happen if we encouraged people to be mindful for brief moments throughout the day all day long. Would that encourage coping flexibility? Would it encourage using a broader repertoire of ways of dealing with things? Would it help people to be more aware of everyday choosing and prioritising and managing actions to meet what’s valued in life?

To summarise: currently coping is measured using a “catalogue” of actions, often out of the context of daily decision-making and activity management. Activity management can vary from day to day, hour to hour, month to month. Being flexible with how we go about life seems, at least to me, to depend on my being aware of what’s important to me, what my energy is like, and the context in which I life. How well do we measure these constructs in pain management?

Cane, D., Nielson, W. R., & Mazmanian, D. (2018). Patterns of pain-related activity: replicability, treatment-related changes, and relationship to functioning. Pain, 159(12), 2522-2529.

Folkman, S., & Lazarus, R. S. (1980). An Analysis of Coping in a Middle-Aged Community Sample. Journal of Health and Social Behavior, 21(3), 219-239. doi:10.2307/2136617

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of the literature. Pain, 47(3), 249-283. doi:http://dx.doi.org/10.1016/0304-3959%2891%2990216-K

Kato, T. (2012). Development of the Coping Flexibility Scale: Evidence for the coping flexibility hypothesis. Journal of counseling psychology, 59(2), 262-273.

Riddle, D.L &  Jensen, M.P. (2013). Construct and criterion-based validity of brief pain coping scales in persons with chronic knee osteoarthritis pain. Pain Medicine 14(2):265-275. doi:10.1111/pmc.12007

Rosenstiel, A. K., & Keefe, F. J. (1983). The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain, 17(1), 33-44.

Schmitz, U., Saile, H., & Nilges, P. (1996). Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain, 67(1), 41-51.

Sleijser-Koehorst, M. L. S., Bijker, L., Cuijpers, p., Scholten-Peeters, G. G. M., & Coppieters, M. Preferred self-administered questionnaires to assess fear of movement, coping, self-efficacy and catastrophizing in patients with musculoskeletal pain – A modified Delphi study. Pain. in press

Snow-Turek, A. L., Norris, M. P., & Tan, G. (1996). Active and passive coping strategies in chronic pain patients. Pain, 64(3), 455-462. doi:10.1016/0304-3959(95)00190-5

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

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

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.

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.

Life seems but a succession of busy nothings – Jane Austin

We hold some very contradictory opinions about being busy. On the one hand, Socrates is reported to have said “Beware the barrenness of a busy life”, and on the other Dale Carnegie is quoted as saying “Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.”

Pacing, one of the cornerstones of “traditional” pain management, is intended to moderate both under-activity (avoidance) and over-activity so that important things can get done without running out of puff – or having an enormous flare-up of pain with subsequent crash into a jellied lump. Yet people who cope well with pain, and ourselves if we’re honest, are often guilty of doing more when we are highly  motivated to do something (or want to achieve a specific goal), and doing less afterwards so we can recuperate.

What is an optimal level of activity for a person living with chronic pain and why might this be important?

I’ll address the second question first. Fatigue is experienced by many people living with chronic pain. Fatigue is a term “used to describe a period of extreme tiredness, as a result of emotional strain, physical exertion, boredom or a general lack of rest and sleep” (Psychology dictionary) People living with chronic pain often develop a sense of fatigue as part of their pain, and some authors believe that not only is it because of disruption to the delta sleep phase (the deepest sleep we achieve), but also because some brain activity continues all the time as the neuromatrix processes potential threat from the painful parts of the body. This activity may result in changes to brain structure, although brain structures may actually cause some of this effect (Baliki, Geha, Apkarian & Chialvo, 2008; Wiech, Ploner & Tracey, 2008). The practical impact of experiencing fatigue is to reduce cognitive efficiency: it takes longer to solve problems, and even boring tasks can feel very difficult.

Some interesting facts: the effect of fatigue on performance differs depending on an individual’s beliefs about fatigue – there is a thing called “fatigue catastrophising” which, like pain catastrophising, means individuals unduly and negatively assess the effect of fatigue on their ability to do things. Being fatigued influences the ability to switch tasks from one task to another, fatigue reduces the ability to ‘change tack’. Interestingly, being bored increases the likelihood of experiencing fatigue. There is an optimal level of stimulation in which we operate. Stress, while initially increasing alertness, over time results in increased fatigue.

So in terms of the importance of identifying and developing an optimal level of activity, it seems that for people living with chronic pain, there might be a need to carefully work out just what level of activity is sufficient to avoid boredom but not so much as to stimulate unhealthy levels of fatigue.

And now, what is an optimal level of activity for a person living with chronic pain?

This question is a much more difficult question to answer, not only because “optimal” will depend a great deal on an individual’s satisfaction with his or her activity level, but also because it’s difficult to measure, definitions about activity level are unclear, and because there are many assumptions about activity levels that have been retained since the early operant conditioning model of pain was proposed by Fordyce. In this model, avoidance develops by reducing activity levels as a way to reduce pain (or prevent it from increasing), while over-activity is thought to occur when activity increases pain resulting in avoidance. Some research suggests that over-activity is an ongoing habit used by individuals who have always tended to be those that work long hours and remain highly engaged in activities they value.

There has been a lot of interest in the notion of over-activity, in part because of the recent interest in “pacing”, but also because people who “over-do” exhibit some features inconsistent with the old avoidance model. For some reason people who over-do engage in activity that will increase their pain – and yet they continue doing so, despite the need to “recover” or do less on the days following their high activity days. Something is overriding the (expected or usual) sense of concern about experiencing pain at the time of their over-activity.

A study by Andrews, Strong and Meredith (in press) looks at activity patterns and particularly over-activity and avoidance patterns and has been able to validate the construct of “over-activity” as a pattern of activity that increases pain – but inconsistent findings relating to avoidance and over-activity. While pain is known to increase, the effect of this on future activity levels is not yet known.

What I wonder is whether these patterns relate to contextual aspects of activity carried out by people living lives. We all know that we push ourselves some days and chill out a little on others. We know that sometimes we’ll do things that will be either fatiguing or actually generate pain (like when you need to move house, dig the garden in spring, do a fun run, have a Christmas dinner at our place), and for most of us this is something we accommodate by being a little less busy for a couple of days afterwards. If we take actigraph recordings over a week or two (Jawbone anyone?), I’m sure it will also show a pattern of high activity and then lower activity, so that over time the activity levels probably flatten out around a mean level of activity. When we do something we value very much, the perceived sense of effort (fatigue) may be lower – we feel energised and enthused although we are tired. When we do something we don’t value (for me it has to be vacuuming!), it feels more tiring and time goes very slowly.

I wonder if people living with pain need additional time to “recover” because of both increased pain, and also the feeling of fatigue. And whether perhaps we need to also study what it is about the tasks being undertaken that is valued rather than simply the task activity level. Busyness may depend on the value of what is being done.

 

Andrews, N.E., Strong, J., & Meredith, P.J. Overactivity in chronic pain: Is it a valid construct? Pain.

Baliki, M.N., Geha, P.Y., Apkarian, A., & Chialvo, D.R. (2008). Beyond feeling: Chronic pain hurts the brain, disrupting the default-mode network dynamics. The Journal of Neuroscience, 28(6), 1398-1403. doi: http://dx.doi.org/10.1523/JNEUROSCI.4123-07.2008

Wiech, K., Ploner, M., & Tracey, I. (2008). Neurocognitive aspects of pain perception. Trends in Cognitive Sciences, 12(8), 306-313. doi: doi:10.1016/j.tics.2008.05.005

Routines, habits, boredom & variety: Life skills for living with chronic pain?

I’ve just had a wonderful week on holiday. I escaped the internet, social media, telephones, power, flushing toilets, running water… and it was awesome! There’s something good about taking a break from my usual world to do things completely differently. Now that I’m back I’m reflecting on routines and habits, and how they form an important part of my life.

Routines are sets of behaviours (occupations if you know occupational science) that regularly occur in a certain sequence. Habits are behaviours or occupations we do without needing to directly think about them – maybe because we’ve done them so often they’ve become semi-automatic. Both routines and habits are useful because they reduce the demand on our attention and therefore draw less on our cognitive resources.

This can be a good thing – who would want to have to think about every single thing we have to do to get up and off to work each day?

One of the things people working in chronic pain management often discuss with those they see is how to manage activity levels so that important things can get done without leaving the person feeling exhausted, flaring up their pain, or omitting to do things they value. Activity pacing is one of the main strategies discussed, and although the evidence base for this strategy is skinny, it’s a very common approach. BUT, and it’s a big BUT, it requires people to plan and organise both what they want to do, and how and when they do them.

Many people would think this is pretty self-explanatory. Who doesn’t sort out a To Do list and prioritise what needs doing in a day or week?

Ermmm – actually, there are plenty of people who don’t do this regularly. That’s why one of the most common tools in business is time management! Remember the Day Runner Diary? The Four Quadrants (Steven Covey) Approach? The ABC of prioritising? All tools used to organise what does and doesn’t need to be done.

While these tools are readily used in business, it’s rather less often that we think about helping people organise their lives outside of the workplace. I guess this is because most of us think this just happens naturally – intuitively, if you will. Intuition, though, can be defined as “over-learned habits” that we have learned so well we’ve forgotten we ever needed to learn them in the beginning.

The field of habits and routines is part of self-regulation. Self-regulation includes these components, but also incorporates the ways we raise our energy, calm ourselves down, maintain time awareness, set our sleep/wake cycle, and manage emotions.  Self-regulation theory has been proposed as a model for helping people with some forms of chronic pain cope more effectively with their pain and fatigue (Sauer, Burris,  & Carlson, 2010). There’s some neurobiological evidence to show that some forms of chronic pain, notably fibromyalgia, have greater connectivity and baseline activity between regions of the brain involved in self-regulation including the really important parts involved in executive functioning. This means things like switching attention from one thing to another, or responding to threat appropriately (then settling down afterwards) are more difficult.

And some people are born with, or perhaps develop, less effective self-regulatory neural processes – these are perhaps the people who seem to forget deadlines, arrive late, don’t take medications at the right time, perhaps don’t have regular meals, maybe run out of ingredients (or clean clothes!), and generally find it more difficult to get their life together.

Self-regulation treatments are often concerned with ways to down-regulate breathing, heart rate, and to manage attention. Habits and routines, on the other hand, are larger chunks of behaviour that might not be addressed. Maybe this is why some people forget to do their CBT thought records and don’t do the exercises they’re meant to do. As clinicians, we can think these “forgettories” are a sign of noncompliance, lack of motivation, or not really understanding the importance of the things we ask them to do. I suggest that maybe, for some people, it’s more about failing to have some of the foundational skills needed to get organised into a routine so that there’s enough brain space for people to add new tasks into their day.

What to do about this?

I think we can draw from three main sources of literature here. The first is self-regulation theory where people like Nes, Roach, & Segerstrom (2009), Sauer, Burris & Carlson (2010) are looking at some really useful models. By helping people develop mindfulness, relaxation skills, and awareness of internal physiological states, greater ability to self-regulate is developed. But this only addresses the internal states – what about the bigger chunks?

The next source of literature is probably that from mTBI, or post-concussion rehabilitation. One of the features of post-concussion syndrome is difficulty switching attention, becoming fatigued, recognising when and how to stop or slow down. There are plenty of fun games (yes, even Lumosity!) that can be used to help people develop greater cognitive flexibility, memory, and to improve concentration, attention and so on.

But this still doesn’t address the bigger chunks of activity we need to do. So here’s where I think occupational science and occupational therapy might be really useful: all the tools of time management, cognitive props like using a cellphone alarm to remind you to take medications, daily planners, post-it notes, identifying values and using these to prioritise tasks, having a diary, writing lists – all of these can help, provided they’re tailored to the individual’s needs and lifestyle.

So, before you think that habits and routine are boring, and that planning removes variety – or that the person you’re working with who just doesn’t do those exercises is really Just. Not. That. Motivated. Maybe it’s to do with not being all that great at habits and routines or self-regulation, and maybe you can help them get better at these foundation skills.

 

Clark, F. (2000). The concepts of habit and routine: a preliminary theoretical synthesis. Occupational Therapy Journal of Research, 20(Sup 1), 123S-137S.

Nes, Lise Solberg, Roach, Abbey R., & Segerstrom, Suzanne C. (2009). Executive functions, self-regulation, and chronic pain: A review. Annals of Behavioral Medicine, 37(2), 173-183. doi: http://dx.doi.org/10.1007/s12160-009-9096-5

Sauer, Shannon E., Burris, Jessica L., & Carlson, Charles R. (2010). New directions in the management of chronic pain: Self-regulation theory as a model for integrative clinical psychology practice. Clinical Psychology Review, 30(6), 805-814. doi: http://dx.doi.org/10.1016/j.cpr.2010.06.008

Whiteford, G. (2007). Artistry of the everyday: connection, continuity and the context. Journal of Occupational Science, 14(2), 77-81.

Wiese, Dunn W. (2000). Habit: What’s the brain got to do with it? Occupational Therapy Journal of Research, 20(Sup 1), 6S-20S.

Pacing – Activity management concepts (a longer than usual post)

In the literature recently there’s been a flurry of activity around pacing as a concept. When I first wrote about pacing I couldn’t find very much that had been published, and I ended up writing something that made sense to me at the time. Today I hope to add to that by summarising a few of these recent papers, and discussing some findings from my PhD research.

Firstly, what is pacing?

Pacing isn’t well-defined. In one of a few recent papers on pacing, Nielson, Jensen, Karsdorp, & Vlaeyen (2013) suggest that pacing should be defined as “…the regulation of activity level and/or rate in the service of an adaptive goal or goals” (p. 465).  Gill & Brown (2009) point out that because pacing is poorly defined, and despite the term being used widely and most especially in the mid 20th century (and related to the “3 P’s” of planning, positioning and pacing used for rheumatoid arthritis), there are a diverse range of articles mentioning pacing, but no consensus as to what it might include.

Jamieson-Lega, Berry and Brown (2013) scanned the literature and sought feedback from stakeholders from a range of disciplines, and developed a concept map for the term. Concept mapping involves identifying the use of the concept in the literature, defining the attributes of the concept and developing a model case (a “pure” example), and both borderline and contrary cases (incorporating none or only some of the concepts). Antecedent and consequent outcomes associated with the concept of pacing were also defined, and empirical referents, or phenomena that show how the concept has occurred.

Key criteria for pacing, drawn from the literature by Jamieson-Lega, Berry & Brown (2013) show that pacing has five consistent attributes:

1. Action – pacing involves intentional behaviour
2. Time – pacing occurs over time and involves attending to time
3. Balance – weighting activity and rest in accordance with intended outcomes
4. Learning – pacing needs to be learned, it requires an effort
5. Self-management – the process of using pacing involves independently integrating the practice once the skill has been developed.

The definition proposed by this group is therefore slightly different from Neilson and colleagues:

“Pacing is an active self-management strategy whereby individuals develop self-efficacy through learning to balance time spent on activity and rest for the purpose of achieving increased function” (p. 209).

When would someone need to develop this skill and what might happen if they use it successfully?

Janieson-Lega, Berry and Brown (2013) suggest that there are prerequisites for the need to develop pacing.  These involve activity disruption secondary to pain, imbalance between activity and rest, patient’s lack of pain self-management knowledge and having pain. When an individual successfully uses pacing, the expected outcomes are pain management, self-direction and improved self-efficacy, avoidance of pain exacerbation, balanced activity/rest, increased functional ability, and increased knowledge and skills in activity planning and prioritising (p. 210).

Therefore, if a person with chronic pain isn’t able to engage in what they want to do, finds it difficult to have sufficient rest or activity, lacks self-management knowledge and has pain, they could expect that pacing would enable them to manage their pain more effectively, become self-directed and more confident, minimise flare-ups, have a balance between activity and rest, be able to do more, and know more about what is important and how to achieve what is valued.

What does the literature suggest?

Despite the problems with defining pacing, and consequently having no real measure of pacing, there have been several studies examining the relationship between pacing and other important variables. The first study I saw of pacing was McCracken and Samuel’s 2007 paper looking at the relationship between avoidance, pacing and other activity patterns.  Surprisingly, these authors found that pacing was associated with both activity avoidance and disability. From this study, the authors suggested that avoidance activity may resemble healthy coping (and from this I deduced that pacing is considered “healthy”).

Murphy, Smith & Alexander (2008) conducted a small pilot study of activity pacing in women with lower limb osteoarthritis. This study used actigraphy to monitor movements, and correlated this data with self-reported pain and fatigue. This study found that “high pacers” had more severe, escalating symptoms, and activity pacing was related to lower physical activity. Karsdorp & Vlaeyen (2009) found that activity avoidance but not activity pacing was associated with disability, and challenged the notion that pacing as an intervention is essential in pain management.  van Huet, Innes, & Whiteford (2009) on the other hand, found that “graduates” from a pain  management programme continued to use pacing strategies years after completing a programme, but made no comments as to the effect on outcomes although they did comment that “the application of pacing tended to be individualised, with the use of self-selected time increments and novel strategies providing structure to limit over-activity” (p. 2036).

Andrews, Strong & Meredith (2012) completed a systematic review of activity pacing in relation to avoidance, endurance and functioning.  This study found that pacing was linked to better psychological functioning but more pain and disability, but couldn’t comment on the direction of this relationship.

What about people with chronic pain, what do they think?

People with chronic pain indicate that they use pacing in studies within the qualitative literature. The problem is that these describes rarely include definitions of pacing.  van Huet, Innes and Whiteford’s study from 2009 provides quotes from graduates of pain management programmes who describe pacing as “doing things in bursts of 20 minutes and half an hour, then changing what I’m doing, then go back”; “you don’t have to do the whole lawn at once”.

From my study of people who cope well with pain, participants were selective about their use of pacing. Many of them indicated that pacing was not used when they had an important goal to achieve, while using “chunking” or breaking activities into smaller units was used from time to time – what was interesting is that pain intensity wasn’t used as an indicator for when to stop. Patients I’ve worked with in the past have described using pain intensity or fatigue as the indicator – they always stopped before their pain or fatigue “got out of hand”.

Where does this leave us?

My take in pacing as it currently stands is that there is a great deal of confusion on the matter. My personal opinion, and from both the literature and my own experience with my fibromyalgia, is that pacing can be useful in several ways – but can also be unhelpful.

Here’s how I think it can be useful:

• When beginning to work towards an increased activity level – by setting a baseline level of activity, then titrating this level up by time or “chunk” increments rather than using pain or fatigue as a guide
• When individuals are finding it hard to maintain activity levels over a day/week/month, pacing using time or quota as the guide can help extend activity levels over a longer period
• When people are not sure of their symptoms and find it difficult to know what triggers an exacerbation, usually during the “making sense of pain” phase of adjusting to chronic pain
• When engaging in routine activities that don’t need to be carried out all at once, such as mowing the lawn, doing the laundry, vacuuming the house. Things that need to be done, but might be carried out over a longer period of time than a single session. I used this approach to write my PhD using Pomodoro Technique.  I also use it when doing housework.

When might it be unhelpful?

• When individuals continue to use pain as a guide to stopping activity, and “stop before it flares up”
• When individuals monitor their pain intensity and seek to avoid fluctuations in pain
• When working to a quota doesn’t help them reach goals and isn’t used to reduce distress, disability and isn’t progressed. A good example of this is the “5 minute break” I saw instituted in a data entry workplace. It was a computerised system that stopped the keyboard for five minutes with no over-ride. The “5 minute break” was obligatory for everyone every 45 minutes, there was no rationale for using it, it interrupted flow, and people HATED it. I’ve seen similar things used when people are returning to work – “work for 15 minutes then stop for 5”, maintained for weeks without being reviewed and without establishing effect.

Next steps?

Having arrived at a reasonable definition, I think it’s time to see how people use pacing in daily life, within the context of the ebb and flow of normal activities. I’d like to see an ecological momentary assessment approach to see what triggers use of pacing, how well do people return to their activities, how long is a break, and whether there is an impact on both disability and distress.

 

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

Gill, Joanna R., & Brown, Cary A. (2009). A structured review of the evidence for pacing as a chronic pain intervention. European Journal of Pain, 13(2), 214-216. doi: 10.1016/j.ejpain.2008.03.011

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18(4), 207-213.

McCracken, Lance, & Samuel, Victoria. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain, 130(1), 119 – 125.

Murphy, S. L., Smith, D. M., & Alexander, N. B. (2008). Measuring activity pacing in women with lower-extremity osteoarthritis: a pilot study. American Journal of Occupational Therapy, 62(3), 329-334.

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

van Huet, Helen, Innes, Ev, & Whiteford, Gail. (2009). Living and doing with chronic pain: Narratives of pain program participants. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(24), 2031-2040. doi: 10.3109/09638280902887784