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.

Flare-ups and how to handle them

If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

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Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

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Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

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Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

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Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

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I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

Self-management: What do we think about it?

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

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

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

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

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

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

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

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

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

Results – and what do they mean?

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

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

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

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

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

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

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

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

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

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

Managing sleep problems – a medication-free approach (ii)

Last week I described the “conventional” CBT for insomnia approach (CBTi), but this week I want to introduce an Acceptance and Commitment Therapy (ACT) approach which is superficially similar to CBTi but holds to some of the fundamental principles of ACT: mindfulness, and letting go of control. As is typical for ACT, there are no hard and fast absolutes and instead there is a focus on workability – what works, in context.

Most of the content of today’s post is drawn from my personal experience and The Sleep Book by Dr Guy Meadows. There are five basic steps and according to the book it should take five weeks to get sleep sorted. I’m not as convinced about timeframes, so I’ll describe it as five steps.

1. Discover: this step is about discovering what triggers and maintains insomnia, and focuses on why struggling to start sleeping is counter-productive. That’s right – stop struggling!
2. Accept: well, with a name like ACT you’d expect some acceptance, right? This is not about resigning yourself to nights of poor sleep, but rather a willingness to let go of the struggle, to be fully present in the now – rather than reminiscing about the past, or predicting the future.
3. Welcome: everything that shows up in your mind and body (after all, they’re there whether you want them or not!).
4. Build: a new sleeping pattern by identifying how much sleep you need and when you need it.
5. Live: during the day and sleep during the night!

Like absolutely any behaviour change, this process is not always easy! It takes persistence, courage and doing things that may not feel like sensible things to do! Let’s begin.

Discover: we do a whole heap of things to try to get to sleep – normal sleepers don’t. Normal sleepers just put their heads on the pillow, maybe let their minds wander over the day, and then gently fall asleep. When people with insomnia try to sleep, we try all manner of things to get to that state – and many of those things either prolong the sleeplessness, or actually wind it up!

Meadows describes four factors associated with the start of insomnia:

• risks which may be getting older, being female, being a worrier or depressed, having a family history of rotten sleep, maybe being generally full-on;
• triggers may include life stress, some medical conditions like irritable bowel or a fracture and yes, pain, and medications or alcohol, time zone changes and so on;
• arrivals are memories, thoughts, sensations, emotions and urges that come to visit when we’re trying to get off to sleep but can’t – and these are partly the fight, flight or freeze response which happens when we begin worrying, or are part of the triggers (and we often think it’s those things that need to be got rid of); and finally
• amplifiers, or things that are meant to be helping reduce insomnia but can actually make it worse: things like spending longer in bed, sleeping in, going to be earlier, having naps – and oddly enough, some of the things we’re traditionally advised to do to help us sleep. Things like reading in low light, having a warm bath or warm milk drink, watching TV, listening to the radio, playing with devices like the phone…. Even some of the things we do because we’re not sleeping – like getting out of bed and doing things like checking emails, doing some exercise, going to the loo – all of these things are done to try avoid the chitter-chatter of our mind, or eat least to control or distract from it, yet can paradoxically train your brain to be awake right when you really want to sleep… even things like keeping the room dark, wearing earplugs, doing relaxation, sleeping in a different bed from your partner, trying a new mattress or pillow can be a step too far and train your brain to think controlling these thoughts about sleep is the Thing To Do.

I’ll bet that, like me, most people have done all these things – and some of them are part of CBTi. There is a place for them in moderation – but it’s even better to develop the skill of not being caught up in trying to control our thoughts, worries, feelings, body sensations when we’re heading to sleep.

Now I’m sure this is where people are going “yeah but…” and giving a whole list of why your situation is different. Would you be willing to keep reading and look at some alternatives?

The risk of trying to control these arrivals and amplifiers is that while they don’t work, it’s too scary NOT to do them. Your brain learns, as a result, that sleep is a problem. And what does the brain like best? Oh that’s right – solving problems. Except that if you’ve ever tried to “make yourself” stop thinking, or feeling – have you noticed that you just can’t? Try it now: try and make yourself feel happy. Yeah… you either have to recall something enjoyable from the past, or anticipate something in the future. And while you’re doing that, your brain is cranking up. It’s worse if you try to stop yourself from thinking or worrying because that old fight, flight or freeze response kicks in and up goes your heart rate and perspiration and breathing…

So the first step of this programme is to discover all the things you’re doing to control the uncontrollable. We can’t stop feelings, thoughts, memories and so on from arriving. They just do. So fighting with them and trying hard to get rid of them just does not work – they’re there AND you’re feeling stressed because you can’t get rid of them!

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Managing sleep problems – a medication-free approach (i)

I’ve recently completed two posts on assessing sleep problems in people experiencing persistent pain, and today I turn my attention to strategies for managing sleep problems – without medication. Why without medication? Because to date there are no medications for insomnia that don’t require a ‘weaning off’ period, during which time people often find their original sleep problems emerge once again… I’m not completely against medications for sleep or pain – but I think they need to be used with care and full disclosure about the effects, side-effects, and the need to eventually withdraw from them.

The approach I’m advocating is a modified form of cognitive behavioural therapy for insomnia (CBTi). CBTi is a form of treatment that is now considered to be first line therapy by both the British Association for Psychopharmacology (Wilson, Nutt, Alford, Argyropoulos, Baldwin, Bateson et al, 2010), and the American College of Physicians (Qaseem, Kansagara, Forciea, Cooke, Denberg et al, 2016). It includes sleep hygiene, cognitive therapy for the thoughts and beliefs associated with sleep, and sleep restriction for those who clinically need it. The modified version I advocate is based on Dr Guy Meadows ACT-based approach and I’ll cover that next week, but I’ll describe the classical CBT approach first.

Basic principles

The basic idea behind a CBT approach to insomnia is that although the initiating event may be out of our control, it’s unlikely to be maintaining the problem – and the factors maintaining the problem are typically the habits people have, and the thoughts and beliefs about their sleep problem.

Sleep is a behaviour that is infinitely malleable, as anyone who has travelled far enough on long-haul flights will know (and parents of small babies as well!). There are cues we use to decide when we should head to bed, and how long we should stay asleep. Bodies in turn respond to these cues and modify automatic processes such as digestion, urine production, and body temperature to ensure we stay asleep for as long as needed. When those cues change – for example, we’re in a new time zone when it’s light at the “wrong” time, and we’re hungry at the “wrong” time, we have trouble staying asleep until the body adjusts. Some people say we can manage a two-hour time zone shift every 24 hours, but in some sensitive people even a one-hour daylight savings change can upset the apple-cart!

If sleep is a habitual behaviour, then we can manipulate the cues to our benefit when sleep is elusive. We learn to associate things like the routine we follow prior to going to bed, light in the room, the “winding down” process we use, and even the timing of our snacks and drinks as a way to signal to the body/mind that we’re sleepy/tired.

There are three basic steps in CBTi: stimulus control (aka sleep hygiene), cognitive therapy, and sleep restriction – with the usual relapse prevention steps an essential part as well.

Sleep hygiene (stimulus control)

The basis of sleep hygiene is to control the stimuli associated with going to sleep so that we clearly indicate to the body/mind that it’s time to get to sleep. That means some basic “rules” around what we do in the time preceding getting into bed, and what we do when in bed trying to sleep.

The golden rule is that the bed is for sleep and sex – not for worrying in, not for watching TV or using the computer or phone or tablet, not for arguing in, not for talking on the phone. If you’re awake in bed for longer than 20 minutes, it’s time to get out of bed until you’re sleepy/tired (more on this in a moment), keeping the lights down low, doing something tedious or boring, then returning to bed to actually sleep.

Simple, commonsense things like keeping the room dark and warm, blocking out the worst of the noise, NOT using a TV or radio or any other noise-making device to go to sleep, ensuring caffeine intake is limited, having a regular bedtime and wake-up time, not taking naps through the day and timing when exercise and relaxation are undertaken are all part of sleep hygiene and most of us are aware of these steps. If they’re not familiar to you, this site is a good one – click.

Cognitive therapy

The cognitive therapy part is about managing the thoughts and attitudes that can exacerbate the sleep problem – things like having a busy mind, worrying about not being able to sleep, believing that it’s crucial to have a certain number of hours of sleep or the next day will be awful, getting that sinking dread as bedtime approaches, following any number of almost (and sometimes actual) obsessive rituals to achieve sleep – and so on…

As usual, with any conventional CBT, dealing with these thoughts involves firstly reality testing – Is it true that you must have a certain number of hours of sleep or the next day will inevitably be terrible? Must the room be absolutely silent or sleep will elude you? Then challenging or disputing those thoughts – “It’s possible I’ll feel tired tomorrow, but I can still function even if I’m not at my best”, “It might take me longer to fall asleep but I’ll get to sleep even though I can hear a clock ticking”.

These simple approaches are reasonably easy to implement – and they are effective. But if sleep is still a problem, and the person isn’t getting more than 4 hours sleep a night, it’s time to bring in the big guns.

Sleep restriction

There are two parts of altering sleep habits that are particularly challenging: getting out of bed after 20 minutes of being awake (especially in the wee hours of the morning!); and using sleep restriction. Neither are easy, yet both are effective.

The idea behind sleep restriction is to reduce the amount of time being in bed while not actually being asleep. Simple huh? So that period from when you first hop into bed and until you actually fall asleep is called sleep latency – and the longer your sleep latency, the less sleep you actually get. You become inefficient at sleeping, and worst, your body/mind learns that it’s OK to be in bed wide awake, and as I mentioned earlier, people begin to associate even going into the bedroom as a negative thing which revs up the autonomic nervous system making it even more difficult to fall asleep.

The nuts and bolts are to work out what time you actually fall asleep, and only go to bed at that time. So if you stay awake until 2.00 or 3.00am, you only go to bed at 2.00am. And you keep your morning wake-up time the same as normal. Yes, this means you end up being only able to sleep for the time between 2.00am and 7.00am! Ouch!

The idea is to extinguish the “habit” of being awake while in bed, reducing the association between being in bed and wide awake, while getting you absolutely tired and sleepy that you fall asleep into a deep sleep quickly. Once this falling asleep part happens regularly (usually for a week or so) then it’s possible to begin a very gradual process of bringing the bedtime back to a more reasonable hour – I usually suggest 15 minute increments, returning to the previous step if falling asleep begins to be difficult.

The process is reasonably difficult – not because it’s hard to stay awake (after all, the person has been practicing it for some time!) but because of the mind chatter. It’s truly tough when your mind starts having a go at you, suggesting you can’t sleep, or you’ll be so incredibly tired you won’t cope, or you’ll be cranky and that it’s dangerous and how on earth  will you go at work without any sleep? And this is where having access to a really good clinician can be helpful, although there are apps that provide a pretty good alternative if a human isn’t available.

For a detailed examination of the literature on sleep restriction therapy, Kyle, Aquino, Miller, Henry, Crawford, Espie & Spielman (2015) provide a really good systematic analysis of how sleep restriction is employed in research trials.  For a plain language version of CBTi, this is a good description – click

As I mentioned above, I’ll be going through a slightly different version of CBTi – an Acceptance and Commitment Therapy approach to insomnia that is also gaining popularity and an evidence base. Come right on back next week for that exciting episode!

 

Kyle, S. D., Aquino, M. R. J., Miller, C. B., Henry, A. L., Crawford, M. R., Espie, C. A., & Spielman, A. J. (2015). Towards standardisation and improved understanding of sleep restriction therapy for insomnia disorder: A systematic examination of cbt-i trial content. Sleep Medicine Reviews, 23, 83-88.

Manber, R., Simpson, N. S., & Bootzin, R. R. (2015). A step towards stepped care: Delivery of cbt-i with reduced clinician time. Sleep Medicine Reviews, 19, 3-5.

Qaseem, A., Kansagara, D., Forciea, M., Cooke, M., Denberg, T. D., & for the Clinical Guidelines Committee of the American College of, P. (2016). Management of chronic insomnia disorder in adults: A clinical practice guideline from the american college of physicians. Annals of Internal Medicine, 165(2), 125-133. doi:10.7326/M15-2175

Wilson, S., Nutt, D., Alford, C., Argyropoulos, S., Baldwin, D., Bateson, A., . . . Wade, A. (2010). British association for psychopharmacology consensus statement on evidence-based treatment of insomnia, parasomnias and circadian rhythm disorders. Journal of Psychopharmacology, 24(11), 1577-1601. doi:10.1177/0269881110379307

When philosophy and evidence collide: is an occupation-focused approach suitable in pain management?

I have often described myself as a renegade occupational therapist: I like statistics, I think experimental research is a good way to test hypotheses, I don’t make moccasins (though I occasionally wear them!), I’m happy reading research and figuring out how I can apply findings into my clinical practice.

Occupational therapy is a profession that continues to evolve. The origins of occupational therapy lie back in the “moral” model of treatment for mental illness when advocates found that giving people things to do helped them become well (mind you, some of the reasons for admission to a “mental asylum” were things like “wandering womb”, novel reading, laziness and “female disease” read it here on Snopes). As time passed, occupational therapy was a way to “occupy” troops recovering from war wounds, and later, tuberculosis. At various points, occupational therapists have tried to enclose practice within prevailing models: anatomical, biomechanical, neurological. And then the scope broadens and the profession returns to “occupation” and all it means. Out of this latest movement, and informing occupational therapy practice today is the idea of “occupational science” – this is the “basic science” examining the factors that underpin occupational therapy practice (Yerxa, 1990).

Unlike most “basic sciences”, occupational science draws on areas of knowledge including anthropology, sociology and political science; all social sciences that bring their own philosophical biases to understanding social phenomena. Occupational science is about “what people do in daily life” – those routines, rituals, practices, customs and daily doings that support us in our roles, shape our place in the social world, and help us form an understanding of who we are in the world. Things like how we go about getting up, the way we serve a meal, the way we dress ourselves, how we go from one place to another, the hobbies and fun things we do – all fundamental building blocks of daily life. Occupational therapy, therefore, informed by occupational science, is focused on helping people participate in daily life as fully and equitably as possible, irrespective of health status, gender, ethnicity, religious belief, age and so on.

With a focus on not only helping people participate in occupations, but also using occupation as therapy, it’s not surprising to find a plurality of approaches to treatment. I have seen art used to help people with persistent pain represent the impact of pain on their sense of self – and to celebrate changes that have happened as a result of pain management. I have seen gardening used to help people become stronger, more confident to move and to reconnect with a hobby they had given up because of pain. I have seen people begin new hobbies (geocaching anyone?) as part of occupational therapy. I have used excursions to the local shopping mall to help people regain confidence and reduce their fear of crowded places where they might get bumped. Graded exposure is also an approach occupational therapists use to help people generalise their emerging skills to approach feared movements instead of avoiding them.

What I hope I don’t see is a return to a compensatory model for persistent pain. You know what I mean here: using gadgets or aids to “make life easier” when a person is dealing with persistent pain. Things like a special long-handled tool so people can pick something up from the floor – fine in a short-term situation like immediately post hip arthroplasty, but not so much when the problem is longstanding fear and avoidance. A special vacuum-cleaner so the person doesn’t have to bend – it’s so much easier yes, but it doesn’t address the underlying problem which can be remedied.

Why is a compensatory model not so good for persistent pain management? Well, because in most instances, though not all, the reason a person isn’t doing a movement when they’re sore is not because they cannot – but because that movement increases or might increase pain, and no-one really wants to increase pain, yeah? By providing a gadget of some sort, or even working through a way to avoid that movement, occupational therapists who use this sort of approach are ignoring the strong evidence that this reinforces avoidance as a strategy for managing pain, doesn’t address the underlying fear, and risks prolonging and actually reinforcing ongoing disability. This approach is harmful.

Helping people do things that might hurt isn’t a very popular idea for some clinicians and a lot of people living with persistent pain. It feels at first glance, like a really nasty thing to do to someone. BUT graded exposure is an effective, occupationally-focused treatment for fear of movement and fear of pain (Lopez-de-Uralde-Villaneuva, Munos-Garcia, Gil-Martinez, Pardo-Montero, Munoz-Plata et al, 2016). Used within an acceptance and commitment therapy model, graded exposure becomes “committed action” that’s aligned to values – and engaging in valued occupations is exactly what occupational therapy is all about.

Of course, not everyone enjoys this kind of work. That’s OK – because there are others who DO enjoy doing it! And it’s all in the way that it’s done – a framework of values, commitment, mindfulness and, that’s right, “chat therapy” – which some occupational therapists believe is right outside their scope of practice.

Now unless someone works in a vacuum, via some sort of mind-to-mind process, I cannot think of any therapist who doesn’t communicate with the person they’re working with. Humans communicate effortlessly and continuously. And “chat therapy” is about communicating – communicating skillfully, carefully selecting what to respond to and how, and focusing on clinical reasoning. Of course, if that’s ALL the treatment is about, then it’s not occupational therapy, but when it’s used in the aid of helping someone participate more fully in valued occupations using CBT, ACT, DBT or indeed motivational interviewing is one of the approaches occupational therapists can employ both within an occupation as therapy and occupation as outcome model.

I firmly believe that occupational therapists should follow an evidence base for their work. While I openly acknowledge the paucity of occupational therapy-specific research in persistent pain, particularly using occupation as therapy, there is plenty of research (carried out by other professions) to support approaches occupational therapists can adopt. After all, we already use developmental models, neurological models, sociological models, anthropological ones and yes, psychological ones. And that’s without venturing into the biomechanical ones! So it’s not an unfamiliar clinical reasoning strategy.

What makes occupational therapy practice in pain management absolutely unique are two things: a complete focus on reducing disability through enabling occupation, and a commitment to bringing skills developed “in clinic” outside into the daily lives and world of the people we are privileged to work with. What we should not do is focus on short-term outcomes like reducing (avoiding) bending with some new technique, while being ignorant of other occupational approaches. We are a fortunate profession because all of what we do is biopsychosocial, let’s not forget it.

 

López-de-Uralde-Villanueva, I., Muñoz-García, D., Gil-Martínez, A., Pardo-Montero, J., Muñoz-Plata, R., Angulo-Díaz-Parreño, S., . . . La Touche, R. (2016). A systematic review and meta-analysis on the effectiveness of graded activity and graded exposure for chronic nonspecific low back pain. Pain Medicine, 17(1), 172-188. doi:10.1111/pme.12882

Yerxa, E. J. (1990). An introduction to occupational science, a foundation for occupational therapy in the 21st century. Occup Ther Health Care, 6(4), 1-17. doi:10.1080/J003v06n04_04

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

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.