Making sense: Does it help people with pain?

I love it when my biases are challenged (seriously, I do!). And in the study I’m talking about today, my biases are sorely challenged – but perhaps not as much as I initially thought.

Lance McCracken is one of my favourite researchers investigating processes of acceptance and living a good life in the presence of chronic pain. In this paper, he collaborates with a colleague currently involved in the INPUT pain management programme established at Guy’s and St Thomas’ NHS originally by Michael Nicholas who draws on a CBT model of pain management, and now more firmly in the third wave camp of ACT (Acceptance and Commitment Therapy). The paper is ‘Making sense’ and describes a cross-sectional study of sense-making by people with chronic pain attending the INPUT programme.

Making sense is something humans do without even thinking about it. Humans are prone to (and probably for good adaptive reasons) generate patterns out of random information. We gaze at shadows at night and think we see faces or intruders, and we look at clouds and see dragons and kittens. When we’re sore we also try to make sense of what’s going on – does this ouch feel like something I’ve had before? does it feel mysterious or can I carry on? have other people I know had this same ouch and what did they do?

In the search for making sense out of pain that otherwise seems random, clinicians have, since time immemorial, generated all sorts of stories about what might be going on. The wandering uterus. The evil spirit. The slipped disc. The leg length discrepancy. Clinicians, when faced with their own uncertainty about what exactly pain represents, can encourage patients to seek diagnosis: some sort of “explanation” for the problem. When that’s insufficient, more recently we’ve seen the flourishing of explanations for pain from a neurobiological perspective, particularly “pain as an expression of threat to bodily integrity”, a decision that is “made by the brain”.

My own research, investigating the experiences of people who indicated they live well with pain, reflected this same process. They sought a name for their experience, they wanted to understand the impact of pain on daily doing – those fluctuations and variances that emerge during the days and weeks early in the journey of learning that this pain isn’t going anywhere soon (Lennox Thompson, et al., 2019). Note that the group of people I recruited had come to the point where they identified that they were living well with pain – this group of people represent a small percentage of those who live with chronic pain, and not those who are seeking treatment.

OK, so what did McCracken and Scott (2022) find?

Bear in mind that this study was designed to measure the construct of sense-making in people seeking treatment for chronic pain. Also bear in mind the authors come from a perspective of functional contextualism, or a philosophy of science that argues for “…studying the current and historical context in which behavior evolves … to develop analytic concepts and rules that are useful for predicting and changing psychological events in a variety of settings.” What this means to me is that the form of whatever behaviour we’re observing/measuring matters less that the purpose or function of that behaviour in a specific context.

OK, on with the study.

451 adults attending an interprofessional pain management programme were participants in this study, and the measures were taken before they started treatment. They completed a battery of measures including ones measuring acceptance, cognitive fusion, committed action, tolerance of uncertainty, and pain measures such as the Brief Pain Inventory, numeric rating scale.

The research aim was to investigate a way to measure not only the positives from sense-making, but also the potential adverse effects of doing so. Concurrent with developing the measure, analyses of the inflexible ways we make sense were carried out in relation to outcomes: pain interference, depression and participation.

In the results (read through the analysis, BTW, it’s beautifully detailed), women were found to overthink compared with men, older people tended to want to avoid a sense of incoherence, and more educated people also tended to overthink.

Now, a little theory: coherence can be either literal or functional. Literal coherence is like “common sense” – so if I interpret my pain as meaning something is damaged, and moving it is bad, this is literal coherence. Functional coherence might occur when I realise that I hurt whether I’m doing things, or not, and I decide “this is how it is, I might as well get on with life”. In effect, as McCracken and Scott say, “these terms reflect the difference between language, thoughts and behavior fitting together consistently, (thoughts agree with other thoughts and behavior) versus behavior and goals in life fitting together consistently (behavior patterns succeed in reaching goals even when this seems to contradict “good sense”).

In daily life, people consistently prefer to solve problems and avoid insoluble problems. Makes sense, doesn’t it? Why try to deal with things that won’t change, even if we try hard to change them? BUT then we have insoluble problems that don’t make sense: the earthquakes in Christchurch New Zealand in 2011-2013 were random and we hadn’t had earthquake activity in our city for centuries – consequently we had many crackpots coming up with “predictions” for the next swarm of earthquakes based on phases of the moon or fracking or climate change. Anything to help people feel like they had a sense of control over something that did not make sense.

Chronic pain is often an equally insoluble problem. Many times pain like this does not make sense at all. No injury precipitated my fibromyalgia. There’s no imaging or biomarker for pain intensity. Existing biomedical diagnoses based on structural or biochemical or neurological processes don’t tell us much about who might get chronic pain, how intense it might be, or the impact of that pain on a person’s life. But clinicians and people with pain earnestly seek something, something to explain what’s going on.

For both clinicians and people living with pain, constantly searching for The Thing to explain pain can be exhausting, demoralising and linked to unhelpful patterns of behaviour. Clinicians might repeat the same treatment even though it didn’t work the first time. They might refer the person for more investigations, just in case something was missed. They might refer the person to another clinician, or, worse, they may attribute the pain to “mental illness” or “psychosocial factors”. Many, many clinicians think that giving a person a book about how pain might be constructed “in the brain” will be enough for people to make sense of what’s going on. People with pain might be afraid to get on with life in case they’re doing harm, or because they’re hoping the fix might be around the corner and life can “get back to normal”. They may spend enormous sums of money, time and emotion on treatments to either diagnose the problem, or treat it. They might spend hours brooding on what it could be. Their lives often stop – people with pain have called this “the endless limbo”.

Now there is a measure of sense-making I guess we’ll find out more about this part of learning to live with pain. The three subscales identified were “avoidance of incoherence”, “overthinking”, and “functional coherence”, though the last subscale had poor psychometric properties so wasn’t included in the final analyses.

My wish, however, is that rather than applying this measure to people attempting to make sense of something outside of their experience, we might develop a measure of how rigidly clinicians stick to “coherence” in the face of puzzling pain problems. Perhaps what might be even more influential, we might develop a measure of what happens when a vulnerable person trying to make sense of their pain meets a clinician with a high level of inflexibility about “what is going on”, because despite all the research we have into people living with pain, we haven’t yet recognised the power of the clinician in perpetuating unhelpful inflexibility.

Lance M McCracken , Whitney Scott , Potential Misfortunes in ‘Making Sense’: A Cross-sectional Study in People with Chronic Pain, Journal of Pain (2022), doi: https://doi.org/10.1016/j.jpain.2022.09.008

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

Having The Conversation…

Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle” ( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.

Myths about exposure therapy

Exposure therapy is an effective approach for pain-related anxiety, fear and avoidance, but exposure therapy is used less often than other evidence-based treatments, there is a great deal of confusion about graded exposure, and when it is used, it is not always well-conducted. It’s not a treatment to be used by every therapist – some of us need to challenge our own beliefs about pain, and whether it’s OK to go “into” the pain a little, or even slightly increase pain temporarily!

Below are some common misconceptions and suggestions for how to overcome them:

Misconception: Exposure therapy causes clients undue distress and has adverse consequences.

Suggestions: Although exposure therapy can lead to temporary increases in anxiety and pain, it is important to remember that these symptoms are not dangerous, and that exposure is generally carried out in a very gradual and predictable way. Exposure very rarely causes clients harm, but it is important to know your clients’ medical histories. For example, a client with a respiratory condition would not be asked to complete an exposure designed to elicit hyperventilation.

I usually begin with a really clear explanation for using this approach, basing my explanation on what the person has already said to me. By using Socratic or guided discovery, I try to understand the logic behind the person’s fear: what is it the person is most worried about? Often it’s not hurt or harm, it’s worrying that they won’t sleep, or they’ll have a flare-up that will last a looooong time – and they won’t be able to handle it. These are fundamental fears about having pain and vital to work through if the person is going to need to live with persistent pain for any length of time.

Once I’ve understood the person’s reasons for being bothered by the movements and pain, then I work on developing some coping strategies. These must be carefully carried out because it’s so easy to inadvertently coach people into using “safety behaviours” or “cues” that work to limit their contact with the full experience. Things like breath control, positive self-statements, any special ways of moving, or even ways of recovering after completing the task may serve to control or reduce contact with both anxiety and pain. I typically draw on mindfulness because it helps people focus on what IS happening, not what may have happened in the past – or may happen in the future. By really noticing what comes up before, during and after a graded exposure task, and being willing to experience them as they are, people can recognise that anticipating what might happen is often far worse than what does happen.

Finally, I’ll work through the scenario’s – either pictures of movements and activities, or descriptions of the same things. I prefer photographs (based on the Photographs of Daily Activity), because these elicit all the contextual details such as the other people, weather, flooring or surface and so on that are often factors increasing a person’s concerns. We begin with the activity that least bothers the person and consistently work up from there, with practice in the real world between sessions. I’ll go out to the places the person is most concerned about, we’ll do it together at first, then the person can carry on by themselves afterwards.

Misconception: Exposure therapy undermines the therapeutic relationship and leads to high dropout.

Suggestions: If you give your person a clear reason for using this approach and deliver it well,  the person is more likely to achieve success – and this in turn strengthens your relationship. Additionally, there is evidence that dropout rates for exposure are comparable to other treatments.

There is something about achieving a difficult thing that bonds us humans, and if you approach graded exposure with compassion, curiosity, and celebration, you may find your relationship is far more rewarding and deeper than if you simply prescribe the same old same old.

Misconception: Exposure therapy can lead to lawsuits against therapists.

Suggestions: Survey data suggest that lawsuits against therapists using exposure are extremely rare. As with any kind of therapy, you can take several steps to protect yourself from a legal standpoint. Don’t forget to obtain informed consent, ensure your treatment is delivered with competency, professionalism, and ethical consideration.

The best book/resource by far for graded exposure is Pain-Related Fear: Exposure-Based Treatment for Chronic Pain, (click) by Johan W.S. Vlaeyen, Stephen J. Morley, Steven J. Linton, Katja Boersma, and Jeroen de Jong.

Before you begin carrying out this kind of treatment, check you have these skills (from the book I’ve referenced):

Vlaeyen, Johan, Morley, Stephen, Linton, Steven, Boersma, Katja, & de Jong, Jeroen. (2012a). Pain-related Fear. Seattle: IASP Press.

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

The fourth step in learning to sleep well within an ACT framework, is build. My previous posts were: Discover and Accept and Welcome.

In build, we’re beginning to build new practices. This is about learning how much sleep you need, and when you need to head to bed and wake up again.

I know when I had trouble sleeping at night (I refused to call it insomnia, but it most definitely was!), I thought I’d tried everything to help. I had used all the sleep hygiene strategies like no devices in bed, no TV in bed, do some relaxation as I lay down, have a regular bed-time and wake-up time – and one of the things I tried to do was eliminate coffee after lunchtime. While most of the time coffee isn’t a problem for me, I learned that when I was vulnerable to not sleeping, coffee and similar substances (including chocolate and alcohol) were not good for me. And today I still don’t drink coffee after lunch and limit myself to three or so cups a day.

So… what’s different about ACT and this stage of learning to sleep again?

Well, people with pain often talk about being interrupted by their pain – of waking up in the middle of the night because of pain and then not being able to get back to sleep. While there is some truth to the idea that we wake because of pain, in fact we all wake up over the course of a night. You’ll know the typical “sleep architecture” (click here for a nice explanation) where we fall into a deep stage of sleep fairly soon after heading to bed, and that we have periods of REM or rapid eye movement sleep (dreaming sleep) at regular intervals over the night. What you may not be as aware of is that in the periods just before and just after REM sleep, we’re actually awake. Not very awake – but awake enough to roll over and get comfy again. If your bladder does what mine does, I usually have a quick trip to the loo around 2.30ish, and go right back to sleep again.

When you have pain, chances are greater than you are more aware of those lighter periods of sleep and, like I do with my bladder, notice that you are awake. If you then start noticing your pain… or your worries… or your mind starts dropping comments to you, then it’s possible you’ll stay awake. Partly this is because the biological drive to fall into a deep sleep at the beginning of the night has been partly satisfied. Partly also because experiences like pain are very salient or important. So are noises (the cry of a baby, that tapping sound on the window, the car roaring down the road) and during the lighter periods of sleep we’re more likely to wake fully rather than just roll over. We’re not actually waking more often as much as waking more fully, and perhaps for longer than normal.

Building new patterns means some basic “rules” – but rules that are held lightly. In other words, it’s fine to change things up a little from time to time (after all, birthdays, travel, having a cold, or getting a puppy are all things that can disrupt sleep), but broadly these things seem to be habits of good sleepers:

1. Heading to bed around the same time-ish each night (or within 20 – 30 minutes of this time). Same applies to waking up – and to help you wake, an alarm clock (I do use my phone for this), and in winter, I use a bright SAD light, and bump up the temperature on my electric blanket. Light and warmth both tend to make you wake up a bit more quickly, so it’s helpful for me during winter when I have seasonal affective disorder (winter depression).
2. Knowing that it’s normal to take around 10 – 15 minutes to fall asleep, and being OK with this.
3. Changing how long you sleep for will take a few weeks – it’s a habit! So don’t go changing your bedtime or wakeup time too often. If you’re using sleep restriction (going to bed a little later than normal, perhaps getting up a little earlier) you can return to a more “normal” length as part of fine-tuning how long you need to sleep for your needs. But, don’t change things too often!
4. If you have a late night out (or if you’re travelling over a time zone or two), try to get up at your usual time. Yes, this means keeping the same wake time over the weekends as the week days!
5. Develop a kind of “wind down” habit – but again, hold this lightly because sometimes there are enjoyable events on late, or you have people visiting, that may mean you’re a little more alert than normal. But on the whole, basically spend around 30 – 45 minutes giving your mind signals that you’re heading to bed. This means cleaning your teeth, checking the doors, stopping watching TV or going on devices, maybe get into your jimjams (PJs!) and heading to bed with a book or magazine.
6. When you’re in bed, just quietly lying there, letting thoughts wander in and out without getting caught up in the content, and you’ll notice yourself quietly falling asleep. This is totally normal. If you do get caught up in your mind chatter, as soon as you notice you are gently bring your attention to your breathing and the sensations of lying in bed, and this should (at this point in your journey) help you fall asleep.

You can see it’s not too different from what I hope you’ve been practicing all along – just that instead of fighting with those thoughts, or getting all tangled up in them, you’ve got skills to let them go, and just be there in the darkness, resting.

There are a lot of specific issues you may also encounter – things like your partner who snores like a chainsaw, or twitches all night long (I’m the guilty party here!); or when you have a cold or a stuffy nose – the former might take a little longer to deal with, but the latter is usually just for a week or so and I tend to be happy using decongestants just for those few nights when I cannot breathe…. As for the partner noise or twitching, like dealing with your thoughts this is probably about you dealing with your thoughts about the noise or twitching! Again, try welcoming or being willing to listen to or feel those habits. Making some room for them rather than getting caught up in thoughts of smothering him or her! And go back to your usual mindfulness practice.

Finally – the last step is living! We tend to put life on hold when we try to control rotten sleep patterns.  Now it’s time to know that while sleeping badly can come again from time to time, you have skills to roll with it – you know you can manage if you avoid fighting with it or trying to control it. Take those steps to build your new sleep habit, and go out there and DO again!

 

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!

Click to the next post

Assessing problems with sleep & persistent pain

Problems with sleep affect most of us from time to time. We know we might find it difficult to get off to sleep because of a busy mind, a different bedroom, changes to our schedule – but for most of us, sleep returns to our normal fairly quickly. For some of us, though, sleep problems continue for weeks, months or even years. And for people living with persistent pain, sleep can be one of the most difficult things to deal with, yet it’s also one of the most common (McCracken & Iverson, 2002). Studies of sleep problems in people with fibromyalgia show abnormal sleep continuity as well as changes in sleep architecture – this looks like increased number of times waking, a reduced amount of slow wave sleep and an abnormal alpha wave intrusion in non rapid eye movement, termed alpha-delta sleep (Dauvilliers & Touchon, 2001). People with fibromyalgia may also experience primary sleep disorder such as sleep apnoea or periodic leg movements during sleep.

The effect of rotten sleep is quite clear: pain increases the day following a disrupted night’s sleep, while high levels of pain on one day has less of an impact on subsequent sleep – but if you’ve been sleeping poorly for a while, all of this becomes something of a blur (Johnson, Weber, McCrae & Craggs, 2017; Slavish, Graham-Engeland, Martire & Smyth, 2017)! When we add in the effects of poor sleep on daily activity, and begin to unpack the relationships between sleep, pain and mood (Goerlitz, Sturgeron, Mackey & Darnell, 2017) well it’s a bit of a complicated matter, and one that I think we need to address when someone comes in for help with their pain.

Assessing unrefreshing sleep or poor sleep can be a reasonably straightforward process, but it needs to be carried out systematically. The event/s that initiate poor sleep may be very different from the events that maintain poor sleep, and while it’s interesting to know what started the sleep difficulties – in the end it’s possibly more important to work out what’s maintaining it.

The following is my attempt to outline what I look for when I’m discussing sleep with someone.

1. Is sleep really a problem? Sounds a bit odd, but some people have a strong belief that they need a certain number of hours of sleep a night, and when they’re not getting that magical number, it can be quite worrying – and actually kick off a sleep problem!

• My key question here is do you wake feeling like you’ve had a good sleep? The number of hours of sleep is irrelevant, to a large extent, if you wake up feeling refreshed. If the person I’m talking to wakes up feeling OK I quickly swing into trying to understand why they’re worried about their sleep – and reassuring them that having a certain sleep duration is not fixed. In fact, sleep length changes over time – remember when you were a kid and slept for hours and hours? And when you were a teen and sleep in until midday if you could, but stayed up most of the night? These are pretty normal changes in pattern and nothing to worry about.

If you don’t feel refreshed, then I dig a little deeper…

2. What’s your sleep routine? This is about finding out the time someone goes to bed, how long it takes to fall asleep, what time a person wakes up, and gets up. I’ll also ask about the pre-bedtime routine: what’s the evening routine like? when do the screens go off? what’s the last drink of the evening? what’s the bedroom environment like?

• I’m looking for a consistent bedtime at around the same time each night, a “wind down” ritual where the same things happen each night to prime the mind for sleep. I’m also looking for factors that might make it more difficult to fall asleep once in bed – screen time (devices, laptops, TV), dealing with worries, solving problems, having arguments, difficulty getting comfortable.
• I’m also looking for a consistent wake up time, and whether the person gets out of bed then – or lies in bed and maybe falls asleep again…
• A comfortable room temperature, a dark room, relatively little noise: all of these very basic things help keep bed for sleep (and sex) but not for much else.

The reason these basic “sleep hygiene” factors help is that our sleep pattern is malleable. It changes depending on environmental factors like light, noise and temperature. This is why we end up having jetlag – it takes a little while to adjust to the new daily light patterns (especially when you travel from Christchurch, NZ to somewhere like Norway!). Our body temperature drops during the night, our digestive processes slow down (that’s why we tend not to do “number twos” at night) and why we pee a lot less at night than during the day. Setting up a consistent routine helps us retain these habits and “teach” the mind/body to sleep at the correct time.

3. What substances do you use? I’m interested in the usual suspects: caffeine (not only coffee, but tea, energy drinks, dark chocolate), but also alcohol, the timing of medications, and that late night snack.

• When sleep onset is a bit fragile it’s probably best not to have coffee and allied substances after mid-afternoon, and for some people (like me!) it’s best not to have them after lunch.
• Medications for persistent pain are often sedating, so people need to know how to use this side effect for the best – and that often means taking medications earlier than first thought.
• It also means for us, recognising that some medications alter sleep architecture (particularly meds given for, paradoxically, insomnia!). Alcohol might help people get to sleep but it changes the sleep architecture, preventing you from falling into that deepest sleep phase – and waking you up to pee halfway through the night, if you don’t do that already!
• I also check whether people are smokers, and if they are, whether they wake in the morning absolutely gasping for a smoke, or whether they smoke during the night. Nicotine withdrawal can keep someone awake during those brief periods before and after dreaming sleep, so may need to be managed with patches.
• Food is also something I check – snacks at midnight are the stuff of school stories, but can become a learned behaviour that we associate with being awake at that time, and maintain disrupted sleep. Maybe a mid-evening protein-based snack is a better option.

4. What’s going through your mind (or what’s your mind telling you) about your sleep? Having hopefully dealt with the basics of sleep hygiene (though I haven’t included exercise yet – that’s coming!), I’m keen to understand the person’s mind chatter about their sleep.

• Worries, rumination and attempts at problem-solving (yes I’ve solved the problem of world peace!) can all keep us from falling asleep. What we do about those thoughts depends on the sleep management approach we’re using.
• Often, the worries are actually worries about not sleeping – that paradoxically keep us from falling asleep! Feeling bothered about “how am I going to cope tomorrow if I don’t sleep”, or “I’m going to be so tired tomorrow, I know I won’t manage” are really common.
• Along with worries about not sleeping, every other unsolved problem seems to pop up courtesy of your mind – this can happen because the person is too busy during the day to stop and ponder (and it’s quiet at night… fewer distractions!) so it’s worth finding out what is going through the person’s mind and dealing with those issues.

5. What’s your pattern of sleeping through the night? This is about the pattern of arousals – when, how long for, what the person does during these times.

• Some understanding of normal sleep architecture is useful here so you can help the person understand why waking just before/just after dreams occurs.
• Reviewing the habits at these times helps to understand the factors that maintains being awake at the wrong times! Waking briefly but without being aware of it is normal, but when internal or external factors intrude during lighter periods of sleep, we become more aware of being awake and can begin to do things that keep us awake, like watching TV, turning the radio on, having a snack, worrying.

To be continued…

These are some of the very fundamentals of assessing sleep problems. Next week I’ll review some more – and the week after look at strategies that can help!

 

Dauvilliers, Y., & Touchon, J. (2001). Le sommeil du fibromyalgique : Revue des données cliniques et polygraphiques (sleep in fibromyalgia patients: Clinical and polysomnography pattern.). Neurophysiologie Clinique/Clinical Neurophysiology, 31(1), 18-33. doi:https://doi.org/10.1016/S0987-7053(00)00240-9

Goerlitz, D., Sturgeron, J., Mackey, S., & Darnall, B. (2017). (395) sleep quality and positive affect as mediators of daily relationship between pain intensity and physical activity. The Journal of Pain, 18(4), S73.

Johnson, M., Weber, J., McCrae, C., & Craggs, J. (2017). (397) the catch 22 of insomnia and chronic pain: Exploring how insomnia and sleep impact the neural correlates of chronic pain. The Journal of Pain, 18(4), S73-S74.

McCracken, L. M., & Iverson, G. L. (2002). Disrupted sleep patterns and daily functioning in patients with chronic pain. Pain Research & Management, 7(2), 75-79.

Slavish, D., Graham-Engeland, J., Martire, L., & Smyth, J. (2017). (394) bidirectional associations between daily pain, affect, and sleep quality in young adults with and without chronic back pain. The Journal of Pain, 18(4), S73.

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

Thinking the worst – and willingness to do things despite pain

Catastrophising, perhaps more than any other psychological construct, has received pretty negative press from people living with pain. It’s a construct that represents a tendency to “think the worst” when experiencing pain, and I can understand why people who are in the middle of a strong pain bout might reject any idea that their minds might be playing tricks on them. It’s hard to stand back from the immediacy of “OMG that really HURTS” especially when, habitually, many people who have pain try so hard to pretend that “yes everything is really all right”. At the same time, the evidence base for the contribution that habitually “thinking the worst” has on actually increasing the report of pain intensity, increasing difficulty coping, making it harder to access effective ways around the pain, and on the impact pain has on doing important things in life is strong (Quartana, Campbell & Edwards, 2009).

What then, could counter this tendency to feel like a possum in the headlights in the face of strong pain? In the study I’m discussing today, willingness to experience pain without trying to avoid or control that experience, aka “acceptance”, is examined, along with catastrophising and measures of disability. Craner, Sperry, Koball, Morrison and Gilliam (2017) recruited 249 adults who were seeking treatment at an interdisciplinary pain rehabilitation programme (at tertiary level), and examined a range of important variables pre and post treatment.  Participants in the programme were on average 50 years old, mainly married, and white (not a term we’d ever use in New Zealand!). They’d had pain for an average of 10.5 years, and slightly less than half were using opioids at the time of entry to the programme.

Occupational therapists administered the Canadian Occupational Performance Measure, an occupational therapist-administered, semi-structured interview designed to assess a person’s performance and satisfaction with their daily activities (Law, Baptiste, McColl, Opzoomer, Polatajko & Pollock, 1990). The performance scale was used in this study, along with the Chronic Pain Acceptance Questionnaire (one of my favourites – McCracken, Vowles & Eccelston, 2004); the Pain Catastrophising Scale (Sullivan, Bishop & Pivik, 1995), The Patient Health Questionnaire-9 (Kroenke, Spitzer & Williams, 2001); and The Westhaven-Yale Multidimensional Pain Inventory (Kerns, Turk & Rudy, 1985).

Now here’s where the fun begins, because there is some serious statistical analysis going on! Hierarchical multiple regression analyses is not for the faint-hearted – read the info about this approach by clicking the link. Essentially, it is a way to show if variables of your interest explain a statistically significant amount of variance in your Dependent Variable (DV) after accounting for all other variables. Or, in this study, what is the relationship between pain catastrophising, acceptance and pain severity – while controlling for age, gender, opioids use, and pain duration. The final step was to enter a calculation of the interaction between catastrophising and acceptance, and to enter this into the equation as the final step. A significant interaction suggests one of these two moderates the other – and this is ultimately captured by testing the slopes of the graphs. Complex? Yes – but a good way to analyse these complex relationships.

Results

Unsurprisingly, pain catastrophising and acceptance do correlate – negatively. What this means is that the more a person thinks the worst about their pain, the less willing they are to do things that will increase their pain, or to do things while their pain is elevated. Makes sense, on the surface, but wait there’s more!

Pain catastrophizing was significantly (ps < .01) and positively correlated with greater perceived pain intensity, pain interference, distress due to pain, and depression – and negatively correlated with occupational therapist-rated functioning. Further analysis found that only pain catastrophising (not acceptance) was associated with pain severity, while both catastrophising and acceptance predicted negative effect (mood) using the WHYMPI, but when the analysis used the PHQ-9, both pain catastrophising and pain acceptance uniquely predicted depressive symptoms.  When pain interference was used as the dependent variable, pain acceptance uniquely predicted the amount of interference participants experienced, rather than catastrophising. The final analysis was using the performance subscale of the COPM, finding that pain acceptance was a predictor, while catastrophising was not.

What does all this actually mean?

Firstly, I found it interesting that values weren’t used as part of this investigation, because when people do daily activities, they do those they place value on, for some reason. For example, if we value other people’s opinions, we’re likely to dress up a bit, do the housework and maybe bake something if we have people come to visit. This study didn’t incorporate contexts of activity – the why question. I think that’s a limitation, however, examining values is not super easy, however it’s worth keeping this limitation in mind when thinking about the results.

The results suggest that when someone is willing to do something even if it increases pain, or while pain is elevated, this has an effect on their performance, disability, the interference they experience from pain, and their mood.

The results also suggest that catastrophising, while an important predictor of pain-related outcomes, is moderated by acceptance.

My question now is – what helps someone to be willing to do things even when their pain is high? if we analyse the CPAQ items, we find things like “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.”; and “My life is going well, even though I have chronic pain.”. These are important areas for clinicians to address during treatment. They’re about life – rather than pain. They’re about what makes life worth living. They’re about who are you, what does your life stand for, what makes you YOU, and what can you do despite pain. And these are important aspects of pain treatment: given none of us can claim a 100% success rate for pain reduction. Life is more than the absence of pain.

 

 

Craner, J. R., Sperry, J. A., Koball, A. M., Morrison, E. J., & Gilliam, W. P. (2017). Unique contributions of acceptance and catastrophizing on chronic pain adaptation. International Journal of Behavioral Medicine, 24(4), 542-551.

Kerns IVRD,TurkDC, Rudy TE. (1985) West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Pain. 23:345–56.

Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. Journal of General Internal Medicine. 16(9), 606-13.

Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N. (1990). The Canadian Occupational Performance Measure: an outcome measure for occupational therapy. Canadian Journal of Occupational Therapy. 57(2), pp82–7.

McCracken LM, Vowles KE, Eccleston C. (2004). Acceptance of chronic pain: component analysis and a revised assessment method. Pain. 107(1–2), pp159–66.

Quartana PJ, Campbell CM, Edwards RR. (2009) Pain catastrophizing: a critical review. Expert Reviews in Neurotherapy, 9, pp 745–58.

SullivanMLJ, Bishop SR, Pivik J. (1995). The Pain Catastrophizing Scale: development and validation. Psychological Assessment. 7:524–32.

Minding your body: Interoceptive awareness, mindfulness and living well

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

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

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

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

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

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

Results

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

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

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

What can we do with this info?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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