Therapeutic approaches

On “us” and “them”: what if we’re one of “them”?


Over the past few years I’ve been pondering the presumed gap between people living with pain and the people who “treat” or work with them.  Most of my readers will know that I live with widespread pain (aka fibromyalgia) or pain that is present in many parts of my body, and the associated other symptoms like DOMS that last for weeks not a day or two, and increased sensitivity to heat, cold, pressure, chilli, sound and so on.

I first “came out” with my pain about 15 years ago: that is, I first disclosed to people I worked with that I had this weird ongoing pain – and finally joined the dots to realise that yes, I did in fact meet criteria for fibromyalgia. I recall feeling a sense of embarrassment, almost shame, for admitting that I had pain that did not go away – as if I shouldn’t acknowledge it, or speak about such “personal” stuff in a chronic pain service.

There’s a weird sort of cloud over being up-front about persistent pain when you’re working in the field. Perhaps I’m a little sensitive, but I’ve seen the little eye roll and the comments about other people who work in the same field as their health problem: drug and alcohol people who have had their experience with drug and alcohol problems; those working in mental health with their mental health issues; people who have survived rape or other criminal activities going on to work as counsellors… Like “are you meeting their needs, or your own?”

Sapolsky wrote about “why your brain hates other people” pointing out that “us/them” responses occur globally and happen instantly and effortlessly. Our neurobiological ancestry has set us up for this process such that within a 20th of a second of seeing a face of “them” we show “preferential activation of the amygdala, a brain region associated with fear, anxiety, and aggression…other-race faces cause less activation than do same-race faces in the fusiform cortex, a region specializing in facial recognition; along with that comes less accuracy at remembering other-race faces.”

It’s therefore not surprising that when a group of “us” work together to help “them”, coming almost as colonialists with our goodies to dispense to the needy natives, we find it a little eerie, maybe a little confronting when “they” want to come along as equals.

In the 1960’s the disabilities rights movement was founded in the United States. Called Independent Living, and founded by people living with disabilities, this organisation campaigned strongly to be seen firstly as people, and only secondly as consumers or healthcare users. “Nothing about us without us” was one of the key slogans used in their campaign. It’s only just happening in chronic pain management.

Persistent pain is often called an invisible problem. Because pain initially seems to be from an acute problem, people are treated within services for the body system involved.  We have gynaecology services for pelvic pain, cardiology for non-cardiac chest pain, orthopaedic surgery and neurology for low back pain and headache – and so the problem of chronic pain fails to be accounted for because this information isn’t collated as a single problem.

Persistent pain is also invisible because no-one sees the person looking different. I don’t know how many times people living with pain have said to me “Oh but people say you look so well, surely there’s nothing wrong with you?”

And the even more invisible group are clinicians who also live with pain. Believe me, it’s not something many of “us” want to admit! And yet, if the statistics are correct, probably 1 in 5-6 of the clinicians working in persistent pain management have pain that’s lasted longer than 3 months.

“But I’m not like them” I hear you say! What’s that about? Oh that’s right, “we” have the answers… “We” are not struggling from day to day. “We” have it all together.

It’s a protective response, I think. One that protects clinicians from acknowledging our own vulnerability and powerlessness when it comes to knowing how to live daily life with pain. One that means clinicians can still pretend to have “the answers” while simultaneously protecting themselves from recognising just how little difference there is between “us” and “them”.

There are differences, though, and these aren’t pretty and might add to the “us/them” dichotomy.

People who are at greater risk of developing persistent pain (and other comorbidities like mood disorders, sleep disorders, obesity and so on) often come from lower socioeconomic areas. This is not as a result of giving up work and thus dropping income, but is actually a predictor of developing chronic pain (Fryer, Cleary, Wickham, Barr & Taylor-Robinson, 2017; Rios & Zautra, 2011; Sampiero, Cardoso, Bush, Riley, Sibille, Bartley et al, 2016). This means the people we see in primary care, or even in tertiary pain management services via the Ministry of Health in NZ, probably have more difficulty accessing transport to see us; have poorer dental care (Whyman, Mahoney, Morrison & Stanley, 2014); may not be able to afford to see a doctor or fill prescriptions (Devaux, 2015); can’t afford to attend a gym – and indeed may not have enough time to go to one after working two low pay jobs.

I wonder if this socioeconomic disparity adds to clinicians’ tendency to think of people with pain as “other”. On top of greater prevalence of mental health problems (Scott, Lim, Al-Hamzawi, Alonson, Bruffaerts, Caldas-de-Almeida et al, 2016) which can add to this sense of “otherness”, particularly when those disorders include “difficult personalities” (Carpenter & Trull, 2015).

It’s unpleasant and slightly unsettling to think of yourself as a clinician being, let’s call it what it is, prejudiced. And even more disconcerting when one of those “others” is one of “us”. Sapolsky suggests several ways of reducing the “them” and “us” divide:

  • Contact – particularly prolonged, task-focused contact where everyone is treated the same
  • Making the implicit explicit – show people their biases (what I’m doing in this article!), perspective taking – what is it like to walk a mile in the shoes of a person trying to deal with persistent pain with limited resources?
  • Replace “essentialism” with “individuation” – explaining that there are fewer differences between “us”, and that the things we do see can be explained in other ways, less “fixed” ways than “oh it’s genetic”
  • Flatten hierarchies – reduce the gap between “them” and “us”. In persistent pain this should mean ensuring people living with pain are involved in both service design and delivery. Nothing about us without us.

Do I expect this gap reduction to be easy? Not at all. There are significant barriers between full acceptance: there are angry people who have had their pain experience invalidated; there are clinicians who have been sworn at, spat at, assaulted (yes, it’s happened to me). But until we begin talking, we simply will not begin to address this problem.

Carpenter, R. W., & Trull, T. J. (2015). The pain paradox: Borderline personality disorder features, self-harm history, and the experience of pain. Personality Disorders: Theory, Research, and Treatment, 6(2), 141.

Devaux, M. (2015). Income-related inequalities and inequities in health care services utilisation in 18 selected OECD countries. The European Journal of Health Economics, 16(1), 21-33.

Fryer, B. A., Cleary, G., Wickham, S. L., Barr, B. R., & Taylor-Robinson, D. C. (2017). Effect of socioeconomic conditions on frequent complaints of pain in children: findings from the UK Millennium Cohort Study. BMJ paediatrics open, 1(1).

Rios, R., & Zautra, A. J. (2011). Socioeconomic disparities in pain: The role of economic hardship and daily financial worry. Health Psychology, 30(1), 58.

Sampiero, T., Cardoso, J., Bush, R., Riley, J., Sibille, K., Bartley, E., … & Bulls, H. (2016). (209) Association of socioeconomic factors with pain and function in older adults with knee osteoarthritis. The Journal of Pain, 17(4), S28.

Scott, K. M., Lim, C., Al-Hamzawi, A., Alonso, J., Bruffaerts, R., Caldas-de-Almeida, J. M., … & Kawakami, N. (2016). Association of mental disorders with subsequent chronic physical conditions: world mental health surveys from 17 countries. JAMA psychiatry, 73(2), 150-158.

Whyman, R. A., Mahoney, E. K., Morrison, D., & Stanley, J. (2014). Potentially preventable admissions to N ew Zealand public hospitals for dental care: a 20‐year review. Community dentistry and oral epidemiology, 42(3), 234-244.

Advertisements

What it means to be a therapist


I wrote the following response to a discussion held recently on a Facebook group Exploring Pain Science – about the term “catastrophising”. It’s a term that elicits great anger and frustration from people living with persistent pain, and I see the term used poorly by clinicians as a judgement about another’s experience. There’s certainly plenty of research showing relationships between high levels of “thinking the worst” about pain, and poorer outcomes – but HOW we as clinicians respond to someone in distress may be more of a problem than the act of a person describing their fears and worries about the future. This is what I wrote:

I’ve been pondering – I think I see people as doing the absolute best they can to make the best decisions they can based on what they know at the time. And “knowing” means all the messy uncertainty, lack of logic, emotion and coercion from others! So whatever a person is doing to manage is the best they can do. All I can do is offer some options that I’ve seen other people use, maybe provide some more information, maybe even more accurate information, support people to be guided by what they see as important (usually values), and be there for them as they make their own minds up about what to do next. I’m a cheerleader, encyclopaedia, visualiser (lay out the options in a way that makes sense), perhaps a guide but only in so far as helping people notice things they hadn’t before.

To me, if someone is thinking the worst, it could be that they don’t have all the information about their resilience that they need, it might be misinformation about what’s happening in their body, it could be conclusions that over-estimate the threat and under-estimate resilience. It might also be difficulty pulling the mind away from sticky thoughts that stop clear thinking, or as one researcher called it “misdirected problem solving” – a way for the mind to remind the person that there’s an unresolved situation. It might also be feelings of helplessness, feeling like there is no point in trying anything new because nothing works anyway, a sense of not having enough energy to keep trying…

Those aren’t necessarily inaccurate thoughts, but they’re certainly not helpful thoughts, especially at 3.00am! So temporarily at least it seems helpful to bear witness to that person’s distress, to make room to be present, not to judge or dismiss but to allow those worst fears to be recognised. Sometimes bringing the worst fears out into the light shows that they can be managed better than expected, sometimes they fade into nothing, and sometimes they allow someone else to be there and support when the person’s run out of puff.

While I can understand how the language of uninvolved clinicians hurts because so often they fail to acknowledge the real distress of the person, I can still recognise that many of the contents of thoughts and beliefs won’t happen, – those scenarios are there wanting recognition, but they may not happen. If they do there will be things to do then – but mostly, when I catastrophise, I use it as energy to recognise how lacking I feel. And that’s not a nice place to be, but it’s simultaneously true (I lack) and untrue (others have what I need).

There’s a process I use for myself called creative catastrophising. I write down my worst fears, get them out on paper, make them visible. Sometimes that’s all I need to do. Other times I begin planning “what if X disaster happened, what would I do” – and when I’m in the right frame of mind, I can figure out a way to get by. I can’t tell anyone else to do that – but it’s a strategy that’s stood me in good stead as I’ve gone through the ups and downs of my life. It’s one way I cope.

Clinicians, if you can bear witness to another’s distress, without wanting to change, fix, judge or DO anything apart from being fully present, you’ll be doing the very best thing you can. The time for doing something “to help” is just around the corner – whatever you do, do NOT tell the person “you’re catastrophising” because this immediately means you’ve moved from being with to judging.

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 (iii)


More on sleeping the ACT way. Step one was discover – all the things you’re doing to help yourself sleep, but in your attempts to control the uncontrollable (thoughts, feelings, memories, worries, sensations, the environment and so on). And hopefully you’ve seen that these things can be counter-productive. That flash new pillow and bed is pretty useless if you travel somewhere. The pills need to be stopped at some point – and then you have to withdraw from them. And the thoughts, and sensations (including pain) just carry right on there not matter what you do.

So step two is to accept: accept what you can control, and what you can’t. Radically, this means changing some of the things you do to get to sleep – like pills (but get medical help for this process), doing relaxation, wearing your eyeshades and earplugs, getting up and doing things when you can’t sleep. It usually means a bit of mind chatter!

The common mind chatter is “I’ll fail”; “I know I won’t sleep and then I’ll be useless the next day”; “if I can’t sleep with my pills and earplugs, how will I sleep without them?”; “I’ll feel lousy the next day”; “I’ve slept this badly my entire life, it’s too late for me”; “why me? It’s a punishment”; “but I’ve got [a new job, a baby, a puppy, going on holiday]”; “I’m too tired”

It’s likely, as you begin doing this, you’ll be in bed wide awake – and it’s at this point you can choose. In that moment, you can decide to listen to your mind – or think of your mind as holding an opinion, but one you do not have to follow. In ACT language, what you’re doing here is learning to accept, or be willing to sit with (lie with), to make room for not sleeping rather than struggling to control it. You can’t control your risk factors, you can’t control that you’ve learned to be awake at this time. You can’t control your thoughts about this – but you can lie there and just notice the things your mind is dumping on your doorstep. This isn’t “giving up” – this is radical willingness to come alongside and be with your own sleeplessness.

The best way to learn to do this is – you guessed it, mindfulness.

Now mindfulness is NOT about getting you to fall asleep. You may fall asleep or feel drowsy which is cool, but if you try to use mindfulness “to fall asleep” you’re again trying to control the problem and mindfulness can then become an empty process. You ARE allowed to let your mind wander… just gently bring it back to where you want it to be. Practicing mindfulness can be done anywhere and everywhere – for a few short seconds while cleaning your teeth, sitting in the car, walking through a door – or longer, like at the end of the day, or in the morning.

Some ways to be mindful: notice your senses by bringing your mind to sounds, sights, smells, tastes, touch. Just list all the things you experience – like “a bird chirp”, “the weight of my legs on the seat”, “the smell of coffee”…and as your mind wanders off, as it will, bring it back gently to what you want to focus on.

Another one to try: close your eyes for a few seconds and notice any thoughts or images that pop into your mind. List it – thought, image, work worry, dinner planning.

This skill is one of the most important and useful skills when you’re learning to sleep again. When you lie in bed wide awake, it’s easy to get caught up in the content of what your mind is bringing to  you, rather than just noticing that you are thinking. The problem is, thoughts your mind brings often lead to that heart thump and dry mouth that keeps you wide awake! Instead, directing your focus on to your breathing, or your body contact on the bed, are simple things that help you just notice and be in the present.

If you have pain, mindfulness is one way of letting you experience the ache without that “Oh no, it’s really bad tonight” judgements of that ache. Gently letting yourself notice where you’re sore – and equally, where you’re not sore – and guiding your mind around your body, noticing every part, the painful and the non-painful – allows you to be present with your pain, without fighting against it. Practicing this skill many times during the day really helps you develop this skill. And don’t be surprised if your mind starts trying to either judge or solve the problem of pain, because that is simply the mind doing what it’s done since forever. Be kind to your mind, and bring your attention back to your breath, or your left earlobe, or your belly button, or your little toe…

At night, in bed, mindfulness is not about helping you relax and fall asleep. What it’s there for is to help you guide your mind away from being caught up in the content of your thoughts or feelings or sensations, and back onto just noticing that you are thinking, and bringing your attention onto something like your breath. It can be scary doing this at night because we often want to get out of bed or control what we’re thinking and force ourselves into sleep. And you know it doesn’t work! What mindfulness does is let your brain and mind know that being awake isn’t a threat – remember the flight, fright, freeze response? By letting your mind know you’re not buying into the horror stories, and instead you’re being OK with simply lying there noticing, you’re teaching your mind to let go of the struggle.

  • Start with feeling the sensation of the bed against your body, from the toes to the head. When your mind begins “minding”, bring your attention to your breath. If you get the urge to move or get up (actually, your mind brings the urge), notice it and choose to stay in bed, and bring your attention back to your breath or touch.

Welcome: You’ll find your mind will have a good go at dumping scary thoughts on you when you decide to be present and stay. Remember it’s your mind’s opinions – and be gentle with your thoughts, feelings and yourself. Stay with it, notice your breathing, make room to feel a bit tired (because you were going to be tired anyway, right?!), and be kind, but firm, with your mind, and bring your attention to your breath yet again. You’re resting your body while you’re lying down, and that’s a good thing.

If you find you have a frequent flyer – a thought or worry or sensation that comes visiting when you’re trying to sleep  – you can simply name it “Hi worry”, or “thinking”, or “here you are scared”, or “back again, pain”. Welcoming the thoughts or feelings may feel odd –  but once you’ve noticed it, labelled it, and then welcomed it, go back to your breathing or noticing your body. You can become quite creative with this process – if you have a vivid imagination for visual images, try projecting your thoughts onto a movie screen, or turning them into cartoon letters, or characters from a movie (my pain is a grumpy witch!), or a ball of string all tangled up, or a scrunched towel.  Some people have taken to imagining their thoughts as different voices – squeaky “I’m scared” or deep “I’ll never sleep tonight” – these strategies are ways to help you step back from the content of what your mind is telling you, and see your thoughts as simply thoughts made by your mind.

Click to the next post

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

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

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 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

Clinical reasoning and why models of low back pain need to be integrated


Clinical reasoning has been defined as “the process by which a therapist interacts with a patient, collecting information, generating and testing hypotheses, and determining optimal diagnosis and treatment based on the information obtained.” (thanks to https://www.physio-pedia.com/Clinical_Reasoning#cite_note-Higgs-1). The model or lens through which we do these processes naturally has a major influence on our relationship with the person, the information we think is relevant, the hypotheses we develop, and ultimately the problems we identify and how we treat them. No arguments so far, yes?

So when we come to thinking about pain, particularly where a “diagnosis” can’t be readily established – or where the treatment doesn’t directly address a proposed causal factor – clinical reasoning should be led by some sort of model, but how explicit is our model, really? And, what’s more, how well does the research support our model, and the relationships between variables?

I’m thinking about my approach as an occupational therapist where my interest in assessment is to identify why this person is presenting in this way at this time, and what might be maintaining their current predicament; and my aim is to identify what can be done to reduce distress and disability, while promoting participation in daily occupations (activities, things that need to be done or the person wants to do). For many years now I’ve used a cognitive behavioural model first developed by Dr Tim Sharp who has now moved into Positive Psychology. His reformulation of the cognitive behavioural model works from the “experience” of pain through to responses to that experience, but incorporates some of the cyclical interactions between constructs. The model doesn’t include inputs to the “experience” component from the nociceptive system – but it could.

Many other models exist. Some of them are quite recent – the STarT Back Tool, for example, provides a very simplified screening approach to low back pain that some people have identified as a clinical reasoning model. Another is by Tousignant-Laflamme, Martel, Joshi & Cook (2017), and is a model aimed at pulling all the various approaches together – and does so with a beautifully-coloured diagram.

But.

You knew there would be one! What I think these two models omit is to generate some relationships between the constructs, particularly the psychological ones. You see, while it’s a cyclical interaction, there are some relationships that we can identify.  And over the next few weeks I’ll be writing about some of the known associations, just to begin to build a picture of the relationships we can assess before we begin generating hypotheses.

For example, we know that the nervous system, and in particular our mind/brain, is never inactive and is therefore never a completely blank slate just waiting for information to come into it, but we also know there are relationships between the intensity/salience/novelty of a stimulus that attract attention, and that this competes with whatever cognitive set we have operating at the time (Legrain, Van Damme, Eccleston, Davis, Seminowicz & Crombez, 2009). So one relationship we need to assess is current contexts (and there are always many), and the times when a person is more or less aware of their pain.

Now, what increases the salience of a stimulus? For humans it’s all about meaning. We attribute meaning to even random patterns (ever seen dragons and horses in the clouds?!), so it’s unsurprising that as we experience something (or watch someone else experiencing something) we make meaning of it. And we generate meanings by relating concepts to other concepts – for a really good introduction to a very geeky subject, head here to read about relational frame theory. Relational frame theory is used to explain how we generate language and meanings by relating events with one another (The Bronnie translation! – for an easier version go here). Wicksell and Vowles (2015) describe this, and I’m going to quote it in full:

As described by relational frame theory, the theoretical framework underlying ACT, stimulus functions are continuously acquired via direct experiences, but also through their relations with other stimuli [5]. This implies that a behavioral response is not due to just one stimuli but rather the relational network of stimuli. Pain as an interoceptive stimulus is associated with a large number of other stimuli, and the actions taken depend on the psychological function(s) of that relational network of stimuli. A seemingly trivial situation may therefore elicit very strong reactions due to the associations being made: a relatively modest pain sensation from the neck trigger thoughts like “pain in the neck is bad,” which in turn are related to ideas such as “it may be a fragile disk,” and “something is terribly wrong,” that eventually lead to fatalistic conclusions like “I will end up in a wheelchair.” Thus, even if the initial stimulus is modest, it may activate a relational network of stimuli with very aversive psychological functions.

In other words, we develop these networks of meaning from the time we’re little until we die, and these mean any experience (situation, context, stimulus, event, action) holds meaning unique and particular to the individual. And these networks of meaning are constructed effortlessly and usually without any overt awareness. Each event/experience (yeah and the rest) then has further influence on how we experience any subsequent event/experience. So if you’ve learned that back pain is a Very Bad Thing, and you’ve done so since you were a kid because your Mother had back pain and took herself to the doctor and then stopped playing with you, you may have a very strong network of relationships built between low back pain, resting, healthcare, abandonment, sadness, anger, loneliness, fear, mother, father, pills, treatment – and the this goes on.

So when we’re beginning to construct a clinical reasoning model for something like low back pain we cannot exclude the “what does it mean” relationship. Every time someone experiences “ouch!” they’re processing a network of associations and relationships and behaviours that go on to influence their response to that experience – and affect attention to it and subsequent response to it.

Over 1000 words and I’ve not even started on emotions and pain!

Take home message: Even if we think we’re not addressing “psychological” stuff – we ARE. Omitting the “what does it mean to you?” and failing to factor that in to our clinical reasoning and subsequent treatment means we’re walking uphill on a scree slope. Oh, and telling someone they’re safe does not change those associations, especially if they’re longstanding. There’s more needed.

 

Legrain V, Damme SV, Eccleston C, Davis KD, Seminowicz DA, & Crombez G (2009). A neurocognitive model of attention to pain: behavioral and neuroimaging evidence. Pain, 144 (3), 230-2 PMID: 19376654

Sharp, T. J. (2001). Chronic pain: A reformulation of the cognitive-behavioural model. Behaviour Research and Therapy, 39(7), 787-800. doi:http://dx.doi.org/10.1016/S0005-7967(00)00061-9

Tousignant-Laflamme, Y., Martel, M. O., Joshi, A. B., & Cook, C. E. (2017). Rehabilitation management of low back pain – it’s time to pull it all together! Journal of Pain Research, 10, 2373-2385. doi:10.2147/JPR.S146485

Wicksell, R. K., & Vowles, K. E. (2015). The role and function of acceptance and commitment therapy and behavioral flexibility in pain management. Pain Management, 5(5), 319-322. doi:10.2217/pmt.15.32

Do pain management programmes really influence “doing” in daily life?


Disability and coping are two of the most important targets in persistent pain management, along with distress and pain intensity (the latter perhaps being the most difficult to influence). A question, however, is whether existing measures of disability truly capture the activities or occupations that people most value. For example, if house cleaning is just not my thing, even if my functioning improved over the course of a programme, would I choose to spend that new capability on vacuum-cleaning or out there in the garden?!

The Westhaven-Yale Multidimensional Pain Inventory (MPI)(Kerns, Turk & Rudy, 1985)  is a true workhorse of pain management measurement: It’s a measure that provides, via the subscales, an estimate of the complex inter-relationships involved in pain-related disability and distress. Three profiles of coping approach have been derived from the MPI indicating “Adaptive Coping” – the person is likely to continue to improve and engage in living well if they carry on as they are; “Interpersonally Distressed” – the person is experiencing difficulties with relationships and is feeling unsupported by others around them; and “Dysfunctional” – the person is struggling with their pain, and both disability and distress can feel overwhelming.

But the disability components of the MPI don’t really indicate the kinds of activities that people might be passionate about – or those that are relevant to their lives. The items are about general activities people “typically” do – in a North American setting. I know they’ve been validated in many different populations but they still represent a general idea of activity and function rather than the unique and idiosyncratic occupations that people do. (What's the difference? An occupation is the unique way I perform the important tasks of my day - the way I dash around the house while simultaneously cleaning my teeth, getting the dogs outside, making sure the curtains are opened and the appliances off just before I head out the door! We could call this "getting ready for work" but the way I do it, and the way you do it is probably very different!)

Why is that important? Well, because people value different occupations differently, and because values drive motivation, a broad measure of disability may not capture the true value of a pain management programme. And this is why the Canadian Occupational Performance Measure (COPM) (Law, Baptiste, McColl, Opzoomer, Polatajko & Pollock, 1990) is often used by occupational therapists to establish exactly what it is a person wants to be able to do. Goal Attainment Scaling is another option.

The study

In this study by Persson, Eklund, Lexell & Rivano-Fischer (2017), the aims were to assess longterm changes in MPI profiles over the course of a year; to look at associations between “Adaptive Coper” profiles at follow-up and improvements in occupational performance; and to look at factors at baseline that might be used to predict changes over time. Participants were, as usual, attending a tertiary pain management centre at a University hospital. They took part in a 21 day programme (oh the luxury of time!), and were seen by a team working together (oh the luxury of a co-located team!) including a psychologist, physician, physiotherapist, occupational therapist and social worker (oh for interprofessional teamwork!). The measures taken at pre and post were the MPI, COPM, and background demographic details.

Now here’s where the analysis gets pretty technical: dropout rates and pre-treatment differences amongst the MPI profiles were analysed using Matt-Whitney U, Kruskal-Wallis, chi-squared and independent t-test. Cross-tabs were used to describe the distribution of the MPI profiles. McNemar’s test was used to assess changes over time on each of the four profiles, and ultimately the participants were grouped into four profiles: never AC (Adaptive coper); losing AC; gaining AC, and stable AC, and these groupings were used to analyse associations between changes in MPI profile and changes on COPM from baseline to follow-up. And this, folks, is why occupational therapists NEED to learn statistical analyses! Because they went on to use univariate and multivariate logistic regressions to see whether demographic factors would predict these profiles at follow-up, incorporating satisfaction and performance scores on COPM.

What did they find?

More participants started the programme with a profile of dsyfunctional or interpersonally distressed than adaptive coper – and at both discharge and follow-up the adaptive coping group increased to be the largest subgroup. 20% of the participants ended up in the “gaining AC” group, 11% the “stable AC” group, 6% formed the “losing AC” group, and 63% were never in the adaptive coping group at all. Not so terrific in terms of broad outcome measures, but pretty consistent with other programmes around the world.

On the more individualised outcome measure of the COPM, people in the never AC group showed least clinically relevant improvement, both the stable AC and gaining AC groups showed more improvement on occupational performance and satisfaction with performance than the never AC group, while the stable AC group improved more than the losing AC group in terms of occupational performance changes.

Long-term changes showed those who started as AC were more likely to stay that way over time, and baseline scores for occupational performance were significantly associated with being AC at follow-up – in other words, people who felt OK about what they could do in terms of occupation, tended to become more capable and less disabled over time as measured by the MPI. More importantly, those people who had higher baseline scores on occupational satisfaction were 1.3 times more likely to shift to the AC group over time. “Clinically relevant improvements on performance and satisfaction with performance at 1-year follow-up, in occupations prioritized by the participants, were associated with having an AC profile at follow-up.” (p. 6).

Confidence in doing important occupations breeds confidence in other parts of living with persistent pain.

What does this all mean anyway?

Well, importantly, people who shifted from one of the other profiles to adaptive coping over a year showed clinically relevant improvements in occupational performance and satisfaction with performance – the authors suggest these findings show improvements on and satisfaction with “doing and performing” important occupations. Not being classified into adaptive coping at any time was associated with least improvement in occupational performance and satisfaction. There is an association between “doing/performing” and “coping/adapting” that hasn’t really been studied. Perhaps starting with things people enjoy instead of beating them over the head with things they’ve never been interested in could improve pain management outcomes. Pain management programmes DO influence doing in real life – if real life doing is used as therapy!

The authors also point out that “30–47% of participants who did not show an AC profile at follow-up still showed clinically relevant improvements on occupational performance and on
satisfaction with occupational performance.” (p. 8) This suggests that the MPI coping profiles only represent one part of the outcomes that are important to individuals: occupation being the individualised daily doings that people value very highly, and pointing to the need to explore individualised outcome measurement in more studies. Given that patient-centred pain management is based on individual goals, using only generic measures is likely to give misleading outcomes about treatment efficacy.

 

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

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.

Persson, E., Eklund, M., Lexell, J., & Rivano-Fischer, M. (2017). Psychosocial coping profiles after pain rehabilitation: Associations with occupational performance and patient characteristics. Disability and Rehabilitation: An International, Multidisciplinary Journal, 39(3), 251-260.