“Exercise” – what does it do for people living with persistent pain?

No, I’m not going to assemble a bunch of papers and point out the effect sizes of exercise on pain and disability! In fact, I’m not even going to point to much research in this post. I want to pose some questions and put some thoughts out for discussion.

See, the people I’ve seen over the years who live with pain have, by and large, not been great ‘exercisers’ before their pain came on, and many haven’t really changed their lifestyle a heap since their pain either. In fact, there is research showing that people with chronic pain don’t change the overall quantity of their activity very much – but instead, change the pattern of that activity over the course of a day (Huijnen et al., . 2011; Tynan et al., 2023). Nevertheless, because of the influence of the ‘deactivation’ idea, along with the pain-related fear and avoidance model, and of course the benefits of exercise on other aspects of health, there would be very few people living with chronic pain who haven’t been prescribed some sort of exercise intervention.

I’ve made my views on exercise known many times – but once again, for the avoidance of doubt, I think movement is awesome, healthy, integral to living well and something to be done regularly and with enthusiasm. I’m less comfortable, however, with people being obligated to ‘do exercise’ with unhelpful explanations, the inflated promise of effects, and in forms that simply do not fit in with the complex lives we all live – now and over our lifespans.

Some of the unhelpful narratives include: that exercise will ‘take away the pain’; that exercise will improve functioning elsewhere in life; that symmetry is crucial; that core strengthening is needed; that ‘form’ must be ‘perfect’ (whatever that is); that progression should follow some formula (and not based on the person’s response to it); that one type of exercise is ‘the right one’; and that exercise must be supervised by a clinician or it doesn’t work. Bah humbug.

So. We do need to move and do that regularly. That’s a given. There are loads of ways to move and people who regularly meet the WHO exercise recommendations do this in a myriad of ways that look a lot like dance, walking, cycling, gardening, playing with the dogs and kids, leaping into the sea or a pool, doing housework, doing hobbies… all the things. Movement and life go together.

What does exercise offer people with pain?

Well, to me exercise is a simplified context for learning what feels OK and what doesn’t. Exercise (or movement practices) don’t have all the contextual factors that make life difficult. For example, when I’m gardening I need to factor in the ambient temperature, the time of year, the lifecycle of my plants, their needs for compost and water and pest removal. I also need to find a suitable time to garden, assemble all my equipment, be aware of all the other things I need to get done in my ‘spare’ time, and what needs doing in my garden. If I’m working alongside other people, I need to bear in mind the bits they want to do, the bits that need doing, and the bits I like to do. We need to coordinate our efforts so we don’t all go to do the same thing. Gardening is always influenced by context.

If, as I suspect, movement practices offer a simplified context to do movement with a person who helps me feel safe (I won’t damage myself when a therapist is present), who can encourage me to nudge in to movements I’m not confident about, who can offer suggestions about how I might change the way I go about doing a movement, or the quantity – then the ‘work’ is much less about the form of movement I do but much more about the ‘work’ the clinician does. And clinicians, it probably isn’t to do with the form or quality of my movements, but so much more about how YOU go about guiding ME to experience what my body is feeling like while it’s doing the things.

If my hunch is on the money, then the skills so often relegated to ‘oh you’d better do some communication stuff’ or ‘those soft skills’ might actually be the most critical ones a clinician can develop. Because, so it’s been found, words are sticky and have power (O’Keeffe et al., 2022) – and the more people listen to the words spoken in a clinical context, the less able they are to notice their own body responses (we can’t do divided attention very well). And those words spoken can act as life-long rules for behaviour (Barnes-Holmes & Harte, 2022). We know this simply by listening to the narratives of people describing no longer doing things they love on the basis of an authoritative word from a surgeon about the state of an osteoarthritic joint, or back pain and the risk of ‘damage’…(eg Stenberg et al., 2014; Christe et al., 2021).

What skills might be needed to facilitate awareness and build confidence?

Guided discovery is an approach used in psychotherapy – this involves the clinician obtaining data (information) from the person using open-ended questions, then guiding the person to pull that information together in surprising ways, testing assumptions and helping them to notice what they already know to be true. In therapies such as graded exposure for phobias, guided discovery helps people notice and be OK to nudge into discomfort, waiting for the symptoms of anxiety to reduce, and then noticing that this has happened even in the presence of the thing the person fears. From ACT, noticing without judgement is an integral process for people to tune in to sensory experiences so they can be in the present moment and become aware of the in-real-time impact of their actions.

I suspect the same skills might be critical for effectively guiding learning in movement therapies. That is, helping the person nudge into previously worrying movements, guiding them to notice what happens, remaining engaged in the movement enough times that the alertness level drops, and then drawing the person’s attention to how that feels. The therapists work is all about guiding the person to notice their own sensory experience, and of course, in structuring the movements so that the intensity and complexity suit where the person is at.

What this kind of approach won’t do on its own, is help that person transfer their learning undertaken in the safe clinic area with a safe clinician, into the complexity of daily life – and this is where occupational therapists should be adding their input. Because learning doesn’t transfer readily from one context to another without this process being structured, and without lots of repetition and exposure to lots of different contexts.

Helping people gain confidence in what their body feels like when it’s moving is a ‘transferable skill’. Learning to trust your own body experience allows you to experiment with different forms of movement practice. Different movement practices allow us to keep moving throughout our entire lives, in different ways to suit time, equipment, location, goals, money and motivation/interest.

You see, I don’t think movement or exercise is much about fitness or other physiological factors, except that when someone has a pain problem, it’s likely to mean a much bigger reaction from the nervous system (ie pain payback or pain flares) than in everyday folks. To counter this, we need to build confidence, awareness, willingness to go gently into these uncomfortable experiences, and then to sustain practice in all the life contexts so we can be able to do the things exercise and movement are supposed to promote: healthy living. If exercise doesn’t contribute to healthy living (note the emphasis on living), then all the health in the world isn’t worth it. If I’m healthy but don’t do the living I want to do, why that sounds a lot like being in prison.

Barnes-Holmes, D., & Harte, C. (2022). Relational frame theory 20 years on: The Odysseus voyage and beyond. Journal of the Experimental Analysis of Behavior, 117(2), 240-266. https://doi.org/10.1002/jeab.733

Christe, G., Pizzolato, V., Meyer, M., Nzamba, J., & Pichonnaz, C. (2021). Unhelpful beliefs and attitudes about low back pain in the general population: A cross-sectional survey. Musculoskelet Science and Practice, 52, 102342. https://doi.org/10.1016/j.msksp.2021.102342

Huijnen IP, Verbunt JA, Peters ML, et al. Differences in activity-related behaviour among patients with chronic low back pain. European Journal of Pain 15(7):748-755, 2011.

O’Keeffe, M., Ferreira, G. E., Harris, I. A., Darlow, B., Buchbinder, R., Traeger, A. C., Zadro, J. R., Herbert, R. D., Thomas, R., Belton, J., & Maher, C. G. (2022). Effect of diagnostic labelling on management intentions for non-specific low back pain: A randomized scenario-based experiment. Eur J Pain. https://doi.org/10.1002/ejp.1981

Stenberg, G., Fjellman-Wiklund, A., & Ahlgren, C. (2014). ‘I am afraid to make the damage worse’ – fear of engaging in physical activity among patients with neck or back pain – a gender perspective. Scandinavian Journal of Caring Sciences, 28(1), 146-154. https://doi.org/10.1111/scs.12043

Tynan, M., Virzi, N., Wooldridge, J. S., Morse, J. L., & Herbert, M. S. (2023). Examining the Association Between Objective Physical Activity and Momentary Pain: A Systematic Review of Studies Using Ambulatory Assessment. Journal of Pain. https://doi.org/10.1016/j.jpain.2023.10.021

Villatte, M., Villatte, J. L., & Hayes, S. C. (2016). Mastering the clinical conversation: Language as intervention. Guilford Press.

The words we use to talk about pain

Are you a ‘pain sufferer’? A ‘pain warrior’? A ‘pain victim’? Do you ‘ache’ or is it a ‘stabbing’ pain? Do you even know what ‘lancinating’ means?

And let’s add in: are you a ‘catastrophiser’? Has your pain been developed through ‘chronification’? Is your body ‘unbalanced’ or ‘asymmetrical’? Do you ‘comply’ or ‘adhere’? Are you ‘motivated’?

The ways we talk about pain are weird! We blithely use words, us clinicians and researchers (and yes, people with pain) without perhaps, really coming to grips with what the words mean – or what they say.

One of the themes in qualitative pain research is the idea of ‘pain as indescribable’ – pain is invisible and can’t be put into words (Munday, et al., 2021) and yet as clinicians we’re constantly trying to find out ‘what it feels like’ and ‘how much it hurts’. So people with pain (and clinicians) turn to metaphors and by using metaphors attempt to bridge the gap between something known and the unknown/indescribable. The language and phrases we all use reveal some uncomfortable attitudes.

There have been many, many papers discussing the ‘battleground’ metaphor in medicine (e.g. Kirmayere, 2008; Loftus, 2011; Neilson, 2016). The ‘war against’ [disease of the time] has apparently been used since the 17th century (Diaz Vera, 2012; Cohen, 2010), with ‘the enemy’ being ‘targeted’ to ‘eradicate’, ‘annihilate’, ‘attack’, ‘battle’ and ‘destroy’ (Johnson, 2023)- and of course, to overcome. But what of the person? For some reason I keep thinking ‘the treatment was successful, but the patient died.’

And so we have ‘pain killers’ and ‘pain attacks’ and ‘fighting pain’ – and in a depiction of winning or losing, when the ‘battle’ isn’t ‘won’ (ie the pain remains), who are the prisoners of war? Are they ever released?

I’m not covering any new ground in this post, just reviving some of the issues there are with this ‘battleground’ metaphor.

But there are other battlegrounds. Hidden tensions that people living with pain talk about, but very quietly. Here are some:

• the tension between attending to pain management and Doing the Things, and also trying to fulfil the normal daily life roles and responsibilities that come with living. Balancing the obligation (and desire) to do rehabilitation with the obligations and needs of partner, family, employer – oh and to have some time and space to just BE for yourself.
• the challenge of balancing a focus on resuming work and doing exercise with doing the things that are meaningful and make life worth living. Wanting to and in many cases having to focus on returning to work (because income matters, and because compensation systems obligate it) and the exercise programme but not having time to play the guitar or cook a meal, or even have sex because it’s not the focus of pain management.
• the challenge of looking good enough to feel good, but not good enough to lead people to think you’re completely well; then being told ‘you look so well’ and therefore not ‘suffering’
• the difficulty with wanting to have some say in your care but being told you’re ‘noncompliant’ when you say you don’t want a treatment you’ve tried before (didn’t work), or that doesn’t fit with your life.
• the task of being the only one present at each healthcare appointment, but not having the energy or voice to point out the discrepancies between what’s said verbally and what’s documented – and worse, having what’s documented interpreted by someone with a particular perspective about you and what you ‘should’ do/be/get
• the need to come up with future goals for therapy when just getting through each day is a challenge. Worse – coming up with goals when you’ve only just met the clinician! And not everyone sets goals….

The job of being a person receiving treatment for chronic pain is complicated. For clinicians, the experience of being on the receiving end of treatment within a healthcare system is eye-opening. The uncertainty of the outcome – the foreign processes, the language, the power dynamics, the context of ‘care.’

In a fascinating paper, Miglio and Stanier (2022) discuss the need to go beyond words, suggesting that creative expression might be one way for people with pain to express their experience in clinical encounters. Creative expression being one way to develop an ‘intersubjective’ recognition of pain. Or is it? I look at a painting and it speaks to me of one thing. Another person looks at the same painting and it speaks to them of something quite different. Can we share the meaning? Miglio and Stanier are interested in ‘how shared understanding can facilitate transformation of painful experiences for the better – especially when the meaning is co-developed within a group dynamic of shared power to address marginalisation‘ (p. 8). Because one of the themes often found in qualitative pain research is this sense of utter isolation, of separation from normal life, other people, agency and alienation. Their point is that making sense of pain might occur in a clinical setting, but mostly the process of making sense of pain occurs well beyond the four walls of a therapy office.

What does all this mean? As a person living with pain, I don’t usually think about how I describe my pain. When I have tried, I feel inadequate. I attempt to come up with something unique and hopefully that doesn’t increase my distress – something neutral. I do this deliberately because I know that when I do talk about my pain in illustrative language it increases my attention and concern about it. And I risk being called ‘a catastrophiser.’

I think of numbers on a pain scale as a communication transaction – if I say this number I might be taken seriously, if I say that number I’ll be disregarded. I think the same of goal-setting – if I say I’m looking for this outcome (say, the ability to work), we can agree but if I say I’m looking at this other outcome (say, the ability to go fishing) I’ll probably be told it’s not important. For my hip and groin pain, having full RoM means I’m fine – too bad that in the morning I have trouble rolling over to get out of bed.

I’m struggling to really convey the position I hold as a person living with pain, and as an academic and clinician and researcher. The linguistic tangles we have because pain is an experience, not a thing and yet we need to communicate about the experience in ways that others can attempt to understand. Imperfectly. So if pain is, as some have said, ‘an output of the brain’, how imperfect is this? And is it any more imperfect than pain as a number, or pain as an image (pain pathways), or pain as a disease, or ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.’

All I can say for now is that pain is that the words and images I use to describe my pain have developed within my sociocultural context, and with an eye to the impact my description might have on those around me, and myself. That other’s opinions of how well my description ‘works’ are irrelevant – the workability of my description depends on what I’m wanting to achieve by it. And right now, I want to notice the location and quality and intensity of my pain, and make room for it so I can be with it and be curious about how it might play out today, instead of resisting or avoiding.

Cohen E. The modulated scream: pain in late medieval culture. London: University of Chicago Press Ltd (2010). 384.

Díaz Vera JE. When pain is not a place: pain and its metaphors in late middle English medical texts. Onomázein. (2012) 26(2):279–308. doi: 10.7764/onomazein.26. 10

Kirmayer, L. J. (2008). Culture and the metaphoric mediation of pain. Transcultural Psychiatry, 45(2), 318-338. https://doi.org/http://dx.doi.org/10.1177/1363461508089769

Kugelmann, R. (1999). Complaining about chronic pain. Social Science & Medicine, 49(12), 1663-1676.

Johnson, M. I., Hudson, M., & Ryan, C. G. (2023). Perspectives on the insidious nature of pain metaphor: we literally need to change our metaphors. Front Pain Res (Lausanne), 4, 1224139. https://doi.org/10.3389/fpain.2023.1224139

Loftus, S. (2011). Pain and its metaphors: a dialogical approach. Journal of Medical Humanities, 32(3), 213-230. https://doi.org/10.1007/s10912-011-9139-3

Miglio, N., & Stanier, J. (2022). Beyond Pain Scales: A Critical Phenomenology of the Expression of Pain. Front Pain Res (Lausanne), 3, 895443. https://doi.org/10.3389/fpain.2022.895443

Munday, I., Kneebone, I., & Newton-John, T. (2021). The language of chronic pain. Disabil Rehabil, 43(3), 354-361. https://doi.org/10.1080/09638288.2019.1624842

Neilson, S. (2016). Pain as metaphor: metaphor and medicine. Med Humanit, 42(1), 3-10. https://doi.org/10.1136/medhum-2015-010672

January 22, 2024

Self-management skills that are not top of the pops

When I carried out my informal survey of the pain self-management skills people had used in the past week, there were no real surprises. Movement, activity management (pacing – and I will have more to say about this in a couple of weeks!), sleep, attention management and doing something fun were all at the top of the list. Others were lower down and while they don’t get to shine as much, I’m not so sure they are as seldom used as this wee survey suggests.

At the bottom of the list is having hands-on treatment for relaxation or to feel good. OK, perhaps understandable because the whole ongoing debate about hands-on or hands-off therapy is nowhere near resolved. (FWIW I enjoy a massage, there’s something special about being touched nicely by someone who cares about how it feels, but I’m less convinced that hands-on therapy does much more than this. Just feeling nice is, on the other hand, a pretty darned good thing if you’re generally sore.)

The next to last is communicating your needs to others around you. A couple of thoughts here.

First one is that being open and honest about what you need doesn’t come easy to many of us. I think it’s even more difficult if you’re worried that people think you’re well but you’re actually sore. There is stigma associated with asking for help. There is stigma with having an invisible chronic disability. Asking for help risks being denied that help or being rejected. Why would you do that when you’re feeling vulnerable as it is?

The second is that if you’ve been living with pain for many years, our own expectations (and of the people around us) are often recalibrated. That is, our lives adjust and people get used to what we can and can’t do. Initially, some of the people we care about or who are friends may fall away because we’re violating their expectations (we can’t do the things we used to) and lots of people I’ve listened to say they soon learn who their friends really are! Later, we build friendships with those who do understand the ‘new you.’ We also change what we expect from ourselves and find ways to do the things even with our altered capabilities. This means we don’t need to specifically ask for help in the way that this survey identified.

The early days of learning to live with pain involves so many changes, and communicating what we need can be amongst the hardest things to do. I can say, though, that it gets a little easier over time but for me it’s never my favourite thing.

The approach I use is based on some really old ‘assertiveness’ training ideas. First, what not to do…

There’s the pussy-footing approach where we just hint or indirectly communicate what we want. This is often accompanied by frustration and what some people describe as ‘passive-aggressive’ behaviour. You know the thing: huffing because someone didn’t offer to help with a thing. Rolling the eyes. Going quiet and giving people the silent treatment. It’s not a great strategy because none of us are mind-readers! Loads of opportunity for mixed messages or being ignored, and really it’s a great way to undermine an honest and open relationship. The aggressive reaction after a period of being passive comes out of the blue and the person on the receiving end doesn’t know what’s hit them.

The other option is clobbering. You know, the old shouty, ‘I’m right and you’re wrong‘ stance, where again, the other person doesn’t know what’s hit them. It might not even be shouty – it’s the sense that the other person ought to know what you need, and your needs are always top priority, even if you haven’t said anything about what it is you want. Not a great way to win friends and influence people – yet quite common in some areas of social media, and yes, in the workplace.

If neither of these two options is all that great, what’s left? I call it being straight up. It’s calmly and clearly saying what you want. Not apologising, not expecting, just asking or stating your needs.

There is a script or kind of template that can help communicate in this way. It’s called the DESC and I have no idea where it originated. I can tell you that it’s a reasonable formula but as ever, needs to be individualised and tailored for context.

D = describe the current situation or status quo. Something like ‘I’m trying to move this box from here to here.’

E = explain what’s not working about the situation. Maybe ‘I’m having trouble getting a decent grip on it because my fingers are sore and weak.’

S = state your request simply, and clearly. ‘Can you help me by holding on to the other end while I move the box?’

C = indicate the consequences, or how this will help. ‘Then I can get out of your way, the box will be where I need it, and I’ll be happy!’

Even quite complex interpersonal situations can be managed using this strategy.

‘I’m trying to clean the benches [D], but there are heaps of dirty coffee cups on it and I don’t think I should have to clear up after everyone [E]. Would you all do your own coffee cups please? [S] Then I can get on and tidy up quickly [C].’

‘I’ve been having a hard time sleeping recently [D] but you’re lying flat on your back snoring and it’s keeping me awake [E]. If I poke you and tell you to roll over, would you do that? [S] Then I’ll get some sleep and be a much less grumpy person [C].’

You can use this approach in lots of different settings – the important thing is to remember that the other person also has rights and responsibilities, and to be respectful. They may say no!
Here are a few sites with some simple tips and worksheets:

Therapist aid – click

Verywell Mind – click

Skillset – click

And just in case you think this is a 70’s chick being all retro, here are some research papers investigating assertive communication for your reading pleasure!

Ashton-James, C. E., & Ziadni, M. S. (2020). Uncovering and Resolving Social Conflicts Contributing to Chronic Pain: Emotional Awareness and Expression Therapy. Journal of Health Service Psychology, 46(3), 133-140. https://doi.org/10.1007/s42843-020-00017-y

Swift, C., Hocking, C., Dickinson, A., & Jones, M. (2019). Facilitating open family communication when a parent has chronic pain: A scoping review. Scandinavian journal of occupational therapy, 26(2), 103-120.

Braverman, M. T., Volmar, K. M., & Govier, D. J. (2023). “The Pain Doesn’t Have to Control You.” A Qualitative Evaluation of Three Pain Clinics Teaching Nonopioid Pain Management Strategies. American Journal of Health Promotion, 37(2), 210-221.

Pasini, I., Perlini, C., Donisi, V., Mason, A., Schweiger, V., Secchettin, E., … & Del Piccolo, L. (2023). “INTEGRO INTEGRated Psychotherapeutic InterventiOn” on the Management of Chronic Pain in Patients with Fibromyalgia: The Role of the Therapeutic Relationship. International Journal of Environmental Research and Public Health, 20(5), 3973.

What are the most commonly used pain self-management strategies?

In a very unscientific vox populi survey conducted via my blog, I asked people with pain to tell me the FIVE self-management strategies they’d used over the week prior. If you’re interested in completing this yourself, click here: click. (Scroll down that page to the survey).

Today I thought it’s worth looking at the fifth strategy in the list: deliberately doing something fun or enjoyable. How cool is that? Not ‘self-care’ or ‘having hands-on treatment’ but having some fun.

It’s always struck me that when pain hangs around, the first things to go are all those enjoyable, fun, leisure activities that we relish. Things that make life worth living. And yet if I look back on the ‘goal setting’ and treatment plans I’ve seen over the decades, most of them have never included deliberately doing something fun. In fact, some of the programmes I’ve helped develop were rejected by the insurer because they ‘didn’t have exercise’ but included ‘walking along the river going fishing.’ Ummm…. because walking isn’t exercise? No! Because fishing is ‘unrelated to returning to work.’

Why is having fun so good for people with pain? Positive psychology studies show that “In older adults, greater ability to savor positive experiences and higher resilience both predicted greater happiness, lower depression, and greater satisfaction with life (i.e., greater psychological well-being)” Smith & Hollinger-Smith, 2015). Without activities that bring pleasure, it’s hard to savour positive experiences….just sayin’

Oh, you want more evidence. Well, here are a couple of studies I’ve stumbled across.

First is a review of positive affect in pain by Finan and Garland (2015). Old research, but always worth looking at these ‘historic’ reviews and studies because they set the scene for what we’ve learned (and often how we frame ‘problems’) over time. In this review, the authors point out that most of our chronic pain therapy targets negative affect but with fairly modest results. They define positive affect as ‘pleasant moods or emotions that promote approach-oriented behaviours, or pleasant moods or emotions that instill a sense of relaxation, contentment, or serenity’ (p. 178). We know, from experimental studies, that positive affect (induced by watching comedy, laughing, pleasant smells and so on) helps reduce reported pain intensity, and is confirmed via fMRI studies with alterations in activity in the ACC, bilateral insual, secondary somatosensory cortex and left orbital frontal cortex. They go on to report on Zautra and colleagues studies of dynamic affect showing that fluctuations in pain tend to narrow the attention and reduce the ability to experience emotional complexity – such as the bitter-sweet poignancy of a sad ending to a movie. By expanding the number of positive experiences, this emotional narrowing broadens out and pain is also reduced, helping to build resilience. Positive affect also helps people with chronic pain be more positive in their social world – and this can enhance relationship satisfaction (with the person’s spouse, children and friends).

Finally, they point out the Broaden-and-build theory posits that positive affect enables people to access higher-level associations and a broader range of ideas and sensory information. By doing this, people can respond more flexibly to challenges by promoting curiosity and exploration.

I love this diagram showing how positive affect might build resilience (p. 183).

Next is a pilot study (yeah I know, low level of evidence – but wait, there’s more!) of a positive psychology intervention carried out with five people with longstanding chronic pain (Flink et al., 2015). Tiny study BUT they used single case intensive longitudinal measurement to understand the processes that occurred when people engage in positive psychology activities. These activities weren’t ‘fun’ activities necessarily, but are about self-compassion, gratitude, savouring, and ‘my best possible self.’ All of these strategies are found in positive psychology research, and the idea was to investigate the impact of these on people with chronic pain. The results weren’t super-startling – except that, rather surprisingly, measures of catastrophising and disability improved the most! And they weren’t directly targeted. Wow. This study also demonstrates how novel interventions can be examined in groups with small numbers, but still allowing us to measure important changes. As an exploratory design, single case study design replicated with several participants is a method we need to use more.

In a systematic review and meta-analysis, Blasco-Belled and colleagues (2023) found that positive psychology interventions do enhance positive affect and reduce anxiety but didn’t alter depression. There were not many studies included in this analysis suggesting that we still have a hang-up on promoting joy and compassion and all the good things in life. Fancourt and colleagues (2021) discuss a theoretical framework for understanding how leisure activities affect health in the Lancet – using complexity theory. Making it very complicated – but very research-friendly. There is good evidence that doing things that hold meaning and enjoyment help people feel more connected, their lives more meaningful, and in turn feel better in themselves. In the UK it’s even called a thing: social prescribing. As an occupational therapist part of my heart goes yippity yay! while another part sighs in resignation that yet another part of what my profession has been doing for decades is ‘suddenly discovered’ and implemented without occupational therapy’s sophisticated clinical reasoning and research to support those incorporating it.

I can understand why fun doesn’t seem relevant to ‘therapeutic’ programmes where the focus is on medium-term goals to ‘return to function.’ Yet again I find myself asking when will health professionals begin to acknowledge that many people with pain will ultimately need to live for a loooonggggg time with their pain, so incorporating a balance between ‘hard work’ therapy with helping people develop and engage in fun, enjoyable and nourishing activities is critical. Otherwise life becomes simply a set of Things To Do, looking nothing like life and an awful lot like doing hard time.

People living with pain have shown us that doing things that hold enjoyment is important. Why not start there in our therapeutic approaches, so that the confidence that builds from positive affect might influence all the other things carried out in the name of pain management and rehabilitation?

Blasco-Belled, A., Tejada-Gallardo, C., & Alsinet, C. (2023). Positive psychology interventions can improve mental health for chronic pain patients: a systematic review and meta-analysis. Psychology & Health, 1-17. https://doi.org/10.1080/08870446.2023.2250382

Fancourt, D., Aughterson, H., Finn, S., Walker, E., & Steptoe, A. (2021). How leisure activities affect health: a narrative review and multi-level theoretical framework of mechanisms of action. Lancet Psychiatry, 8(4), 329-339. https://doi.org/10.1016/S2215-0366(20)30384-9

Finan, P. H., & Garland, E. L. (2015). The role of positive affect in pain and its treatment. Clinical Journal of Pain, 31(2), 177-187. https://doi.org/10.1097/AJP.0000000000000092

Flink, I. K., Smeets, E., Bergboma, S., & Peters, M. L. (2015). Happy despite pain: Pilot study of a positive psychology intervention for patients with chronic pain. Scandinavian Journal of Pain, 7(1), 71-79. https://doi.org/10.1016/j.sjpain.2015.01.005

Smith, J. L., & Hollinger-Smith, L. (2015). Savoring, resilience, and psychological well-being in older adults. Aging & Mental Health, 19(3), 192-200. https://doi.org/10.1080/13607863.2014.986647

What are the most commonly used pain self-management strategies?

In a very unscientific vox populi survey conducted via my blog, I asked people with pain to tell me the FIVE self-management strategies they’d used over the week prior. If you’re interested in completing this yourself, click here: click. (Scroll down that page to the survey).

My reason for asking the question is that we have a list of self-management strategies, but the definitions and the way strategies are used in daily life are quite murky. For example, we don’t have a clear definition of ‘activity pacing’ though we are starting to investigate it. We also don’t know whether strategies introduced during a pain management programme are those that get carried on over time. We know that movement practices are common, but we’re not certain what forms of movement practice are carried out over a lifetime – and many people living with persisting pain will need to use strategies over a lifetime.

My survey results are below, and I’ll unpack them a bit today.

Now the survey didn’t ask people any details about what these strategies look like, apart from the examples I listed, so I’m drawing on my experiences working with people living well with pain when I talk about them.

No surprises, movement practices come out on top. This is such a broad church of activities! In my PhD study, I found that movement practices were mainly woven into daily life. Things like walking or cycling to work, walking on the beach to ‘clear the mind’, taking the dog for a walk and meeting other like-minded pawrents, and yes… even going to the gym (some of you will know my aversion to that environment!). Movement practices are critical for people with pain because if we don’t maintain full movement practices, we tend to seize up, but more importantly, movement practices in my study were about having ‘head space.’

Movement practices are relatively easy to ‘prescribe’, to ‘count’, and to have unhelpful messaging around. Too many people are told they must do a particular form of movement practice, and do it in a particular way to ‘correct dysfunction.’ This means I’ve seen some people terrified to stop doing the exercises they were prescribed 15 years ago! Movement practices should, IMHO, be about relishing how amazing our bodies are. Celebrating the range of movements we can undertake, enjoying the different tempo’s and rhythms of our bodies, and that our bodies are the way we interact with our world. As long as we DO some movement practice every day, the kind of movement is really up to each individual. And if you use movement practices to ‘clear your mind’ – GO YOU! I do too!

Activity pacing is another familiar strategy, albeit weirdly difficult to define. I’ve defined it in my survey as ‘ways to keep your activity levels consistent‘ rather than the erratic ups and downs we can fall into when pain is the guide. Pacing does not mean you must take a five minute break every 20 minutes as I’ve often heard – pacing means you can reliably predict how much you can manage consistently whether it’s a good or a frankly rotten day. It’s the ‘do no more on good days, and do no less on bad days’ motto – tempered with the total enjoyment of doing more of a thing because it’s important (and fulfills something valuable to the soul), and less of a thing because we have planned to take it easy for that time.

Pacing is a skill that seems to need several steps to learn to use. There’s the initial phase where we need to establish just how much is ‘usual’ (we could call that the baseline); then there’s the adjustment phase where the focus is on adjusting activity levels to either increase or reduce the amount of activity to bring it to the level where it can be consistent; and finally there’s the living phase where it’s about being flexible and values-guided in choices about activity management. Now I’m making these stages up – they’re my observations having seen people at all stages of their living well with pain process – but what I’ve seen at pain management programmes (when pacing is introduced) is a lot of work on the adjustment phase and not much on the living phase. And so much of pacing seems to target ‘boom and bust’ or ‘increasing activity levels’ rather than the end goal which is to feel that we can be reliable about what we can expect from ourselves.

Managing sleep was the third most commonly used strategy and for this I am really happy! Sleep management wasn’t much on the radar when I developed the programme Springboard. While it was discussed a little, I don’t think we knew why sleep management is so critical. It’s because rotten sleep predicts greater pain the following day, and poorer sleep that night…. And having poor sleep poses a risk for developing chronic pain anyway. Pain doesn’t wake people up from sleep, but during those brief moments of wakefulness through the night, if we are experiencing pain, we’re more likely to notice it and wake more fully. If we can’t fall asleep easily, we can stay awake and feeling rotten.

Managing attention is another really important strategy – not to ‘ignore’ pain, or ‘distract from pain’ as much as to use attention to be aware of pain and the mind chatter that goes with it. We could call this ‘mindfulness’ but that brings with it a lot of unhelpful baggage, so I like to draw from ACT and call it ‘clean pain’ and ‘dirty pain’. Clean pain is all the sensory stuff – the prickling, aching, burning…. Dirty pain is all the commentary minds make about the clean pain, including a good few swear words! I suspect managing attention is something that gets easier with time but is inclined to fall apart when something else is happening in life. For example, when I’m not doing my movement practices, or when I’m coming down with a bug.

It’s important to recognise that attempting to ‘ignore’ or ‘not notice’ pain is impossible. Pain is an attention-grabber. Trying to NOT notice pain can be done but typically only for a short time and with much effort. What seems to be more useful is to notice and not judge pain negatively. I characterise my pain as like a very firm hug (at the moment, around my lower back and butt), or like tingly socks with toes in them (my feet are often sore at night). Imagery isn’t talked about very much but it is part of the ‘managing attention’ set of strategies.

I’ve just make a start on unpacking these strategies and as I do, I realise how little we know about HOW people use these during their daily life. When do people do movement practices? How long and how often, and do they change over a lifetime? What cues help people use pacing in their daily life? What happens if pacing can’t be used (eg if you work in retail, you know what I mean, right!)? How is attention management used when driving? When working in the office? When the kids are driving you nuts at dinner time?

The theory of these strategies might be buried beneath decades of cognitive and behavioural therapy and perhaps we haven’t truly examined them as they’re used in people not in a pain management programme. And maybe we haven’t even looked at whether what’s taught during pain management programmes actually transfers into living well with pain. And that is what I found in my study. Maybe it’s time to look a little more deeply into what people actually do in their world?

Self-management, coping – or living with?

After a weekend relaxing by the beach, I’m once again pondering the nature of how people live well with persistent pain. It’s called variously ‘self-management’ or ‘coping’ or, in my life, ‘living with’ pain, and as I pointed out last week, it’s not well-defined. I’m not even sure that people with pain get a look-in at what to call these ‘ways of living’ because it’s typically an academic discussion that excludes the very people who are expected to comply with them!

That gripe aside, what’s wrong with the terms ‘coping’ or ‘self-management’? Coping as a word is used in different ways by different people. I might say “I coped with Friday really well” meaning that I’m feeling OK with what I managed to get done on Friday. Or I might say “I’m coping with some big demands right now” meaning that I’m feeling overwhelmed and need a hand. I could say “I coped with Friday by drinking gin” to mean that I used gin to help me get through Friday and rock on with the weekend! So coping can mean what I do to get by, as a measure of success with a challenge, or a statement about my emotional state.

Self-management can also be a vexed term. As I defined it (last week) “all those things I do everyday that allow me to have a full life in the presence of my widespread body pain.” But it may get called self-care, though that makes me think of scented candles and a bit of self indulgence rather than the complex set of strategies I use to get things done. And as Nicholas & Blyth (2016) point out, the term can be used to refer to a narrower set of goals (only relevant to the medical management of my pain – in my case, nothing is), or it can mean only those things a person learns with a health professional (like a self-management pain programme).

I prefer to think of the ways I live with my pain as just that: living well with pain. All the things that help me do what matters in my life – a pretty broad range of things that are specific to dealing with pain, but also include those other things I do to satisfy my own values and my preferred lifestyle.

I am running a totally unscientific survey of people living with pain, aiming to find out the FIVE self-management strategies people have used over the last week. It’s unscientific because I have no idea who is responding, there are no inclusion or exclusion criteria, and the sample of people completing it are drawn from people who read my blog or social media posts. The reason I’m doing it (and it’s still running! scroll to the bottom of this page to do it) is to see what seems to be popular – but there are some caveats to what I’m finding out. Here are a few:

• If you’ve been living with pain for a while, it’s hard to remember some of the changes you’ve put in place over time. For example, problem-solving doesn’t need to be used as often once you’ve developed a lifestyle and your pain is relatively stable. But in the beginning I’m pretty sure problem-solving is right up there!
• Thoughts and beliefs might have had some radical changes over time – but after a while they become embedded or implicit. For example, that shift from worrying that you’re doing harm when pain flares up to just noticing reduces once you’ve been watching your pain do that over 30 years or more!
• Asking others for help might not be your favourite thing, but in our household we do things together and have pretty much worked out the things that Manly Jack does (rid the house of large spiders, put the rubbish out…) and the things I do (sort out the electronic gadgets, cook the tea). When it comes to pain stuff – he helps me carry heavy things, and knows when I’m getting cranky it’s probably time for a break. Communicating about pain and what I need (and what he needs seeing as he has ankylosing spondylitis) has become a familiar and comfortable routine.

In other words, when self-management strategies are used long enough, they become ‘how we live life’ rather than stand-alone actions. They’re embedded, routinised, habitual lifestyle practices. And you know what? This is what they’re meant to be! The things we do to live well should form natural patterns or lifestyle habits because that’s how they get to support a healthy lifestyle. A bit like choosing the food groups that give us a healthy diet.

The problem is that I don’t think people are given very much support to get these practices into daily life, and for that reason they become these Things To Do. A tick-list of things that ultimately get dropped when life gets busy or they’re no longer seen necessary. Worse: for some people there’s a lot of shame if the strategies just don’t fit in to the way they want to live life.

The thing to remember is that change of any kind is hard. And in living with pain there are a HEAP of things that need to change to allow a person to live well alongside their pain. Much of that change occurs early on, once pain has made its presence felt, and once it’s acknowledged that it’s not going away quickly. This is the time health professionals are of most benefit – and where clinicians can do most harm. This is where the scaffolding that rehabilitation offers can be used to help people make changes in a sustainable and reasonable way.

I’ll write more about rehabilitation approaches next week, but for this week I just want to emphasise the end goal of our work as clinicians. It’s not about pain reduction (though if that happens – woohoo!). It’s about helping people live, and living their life not someone else’s idea of what life should look like.

If we consider living with pain as the end goal of chronic pain management (which it so often is – see why in last week’s post), then we need to look at how to help people integrate principles of self-management rather than particular examples of self-management. We need to remember that life changes over time, and so do self-management strategies and even priorities. Empowerment might be a buzz word (and one I loathe!) yet it is essentially what I hope people with pain get to be. To be in charge of the way you live your life, making accommodations and changes in what you expect from yourself, how you go about doing daily activities, in your routines and habits: this is living as a person, not a patient. But to do that you need to know your options and the impact in both short and long-term of the choices you make. Clinicians, it’s these things that we should be doing, not an endless list of expectations or obligations to ‘take on board’ messages. If a suggestion doesn’t make sense, it just won’t get done.

Nicholas, M. K., & Blyth, F. M. (2016). Are self-management strategies effective in chronic pain treatment? Pain Management, 6(1), 75-75–88. https://doi.org/https://doi.org/10.2217/pmt.15.57

Nielsen, S. S., Skou, S. T., Larsen, A. E., Bricca, A., Søndergaard, J., & Christensen, J. R. (2022). The Effect of Occupational Engagement on Lifestyle in Adults Living with Chronic Pain: A Systematic Review and Meta-analysis. Occupational Therapy International, 1-15. https://doi.org/10.1155/2022/7082159

Slater, H., Jordan, J. E., O’Sullivan, P. B., Schutze, R., Goucke, R., Chua, J., Browne, A., Horgan, B., De Morgan, S., & Briggs, A. M. (2022). “Listen to me, learn from me”: a priority setting partnership for shaping interdisciplinary pain training to strengthen chronic pain care. Pain. https://doi.org/10.1097/j.pain.0000000000002647

Dancing around the hexaflex: Using ACT in practice 1

Acceptance and commitment therapy (ACT) can be slippery to describe. It’s an approach that doesn’t aim to change thought content, but instead to help us shift the way we relate to what our mind tells us. It’s also an approach focused on workability: pragmatic and context-specific analysis of how well a strategy is working to achieve being able to do what matters. Over the next few posts I want to give some examples of how non-psychologists (remember ACT is open for anyone to use it!) can use ACT in session.

Mindfulness – messing about with attention

Thanks to Kevin Vowles, I’m adopting the term ‘messing about with attention’ for the ‘present moment awareness’ or ‘mindfulness’ part of ACT. We can get caught up in how we define mindfulness – they all have value – but make the doing of mindfulness less practical.

Why use present moment awareness? Paying attention, on purpose, and without judgement (one of many definitions! This one from Kabat-Zinn, 2003) serves to disentangle us from thoughts about the past and predictions for the future; has been shown to reduce cortical arousal (Day, et al., 2021); and importantly for this post, comes in many forms.

We know that repeated practice, especially over extended periods of time (say, for 20 – 40 minutes or longer) results in alterations in how parts of the brain respond both when anticipating pain, and during painful experiences (Lutz, et al., 2013), but getting to where extended practice is even achievable can be difficult (Birtwell et al., 2019). ‘Messing about with attention’ can be used, however, anywhere and any time. I’m definitely not suggesting clinicians dissuade people from using long meditations because the results are pretty profound for most people (and most RCTs use around 40 – 45 minutes), but we shouldn’t ignore the usefulness of briefer forms of mindfulness.

During movement or occupation (daily activity)

If you’re a physio, osteo, chiro, exercise physiologist or occupational therapist, you have the most awesome opportunity to bring mindfulness into your sessions. It requires a shift in your thinking, though, because mindfulness used during movement or occupation isn’t quite the same as the usual sitting or even a ‘movement’ meditation. For one, it’s not scripted!

Your mindset

Mindfulness is about noticing, paying attention and being curious, but in many movement practices the aim is to develop ‘proper’ form. To move in a pre-determined manner. Perhaps to strengthen, or to relax, various muscle groups. To create a body movement that conforms to some ideal.

If you’d like to bring mindfulness into your movement session, would it be possible to put these ideas to one side for a moment?

Would you be willing to explore what it feels like to move – maybe in one way, and then in another? Would you be willing to experiment? To play with movement and notice how it feels in the body?

The invitation

To create an environment for practicing this kind of paying attention, the person will need an invitation. The invitation might be something like “I wonder if you feel OK to bring your mind to this part of your body for a moment?” or “If you were to close your eyes right now, what part of your body would you notice first?”

You may want to have a quiet environment, one that’s not distracting, no music or other people talking, somewhere where it’s OK to focus on how the body feels.

The guidance

If the person you’re working with hasn’t used mindfulness like this before, you might want to offer them some guidance about what to pay attention to. Something like “You’ve brought your mind to this part of your body, and as you move, what do you notice changing?” or “As you move, where does your weight shift through the soles of your feet?” or “As you move, can you bring your attention away from that part of your body [the first part you suggested they notice] and on to your breathing?”

Bring their attention to any shifts in position, changes in weight distribution, changes in breath, head position, stance, contact with the floor….

Throughout, your job is NOT to suggest what the person might notice, or experience. Your job is to help them explore, with purpose, and without judging. Guide them to play with movements as they do this: perhaps make tiny movements, or shift weight forward and back, or make big movements, speed up or slow down, add ‘purpose’ by making the movement purposeful – if they’re reaching forward, add in reaching for a cup, a pen, a book, a flower, a cloth. Ask them to notice what happens as they reach for these items. Let them repeat or alternate or otherwise change the way they do the movement.

The closure

End this by returning to the breath. It’s not a rule, and you can end in another way if you like, but I find giving some space to stopping and just breathing gives room for people to let their attention go back to something very familiar (and portable!).

Debrief

Your choice: you can ask the person “what did you notice?” or you can let them spontaneously tell you (or not). During the debrief your approach is to model acceptance of their experience, again without judgement. Let their experience be their experience.

If they say “Oh my mind wandered all over the place” ask them “were you able to bring your mind back?” and if they were (and they usually do!) let them know that’s all that’s needed.

You may want to explore which movement was most free, fluid, comfortable, stable. Which felt best, and can the person replicate it?

It’s not about what you think is ‘good’ form, this approach is about the mindful experiencing for the purpose of experiencing.

Rationale

While there are a billion reasons for using mindfulness, in today’s post my intention is to show that mindfulness offers a way for people to pay attention to their own bodily experiences, and to draw their own conclusions about how their body responds to movement.

My argument is that when people leave our care, they will probably have periods where their body ‘reverts’ to how it was when they first sought treatment. If our job is only to help people return to ‘normal’ without also furnishing people with skills to build resilience, we’re only doing half a job. It might be great for repeat customers, but I believe healthcare has enough to do without searching for ways to get people to come back – and failing to help people get in tune with what their body likes to do and how this feels, seems pretty unhelpful to me.

Showing people ways to really inhabit their own body, becoming skilled at noticing how their body feels during movement, being able to experiment and play with different movement patterns, to adjust and notice how it feels: these are powerful tools for helping people gain confidence in how incredibly versatile their body is. Our job might be less about ‘physical fitness’ or ‘strength’, ‘flexibility’ or even ‘function’, it might be about teaching people meta-cognitive skills of noticing and reflecting on what happens as they move throughout the various life contexts they inhabit.

Birtwell, K., Williams, K., van Marwijk, H., Armitage, C. J., & Sheffield, D. (2019). An Exploration of Formal and Informal Mindfulness Practice and Associations with Wellbeing. Mindfulness (N Y), 10(1), 89-99. https://doi.org/10.1007/s12671-018-0951-y

Day, M. A., Matthews, N., Mattingley, J. B., Ehde, D. M., Turner, A. P., Williams, R. M., & Jensen, M. P. (2021). Change in Brain Oscillations as a Mechanism of Mindfulness-Meditation, Cognitive Therapy, and Mindfulness-Based Cognitive Therapy for Chronic Low Back Pain. Pain Medicine, 22(8), 1804-1813. https://doi.org/10.1093/pm/pnab049

Kabat-Zinn, J. (2003). Mindfulness-Based Interventions in Context: Past, Present, and Future . Clinical Psychology: Science & Practice, 10(2), 144-156.

Lutz, A., McFarlin, D. R., Perlman, D. M., Salomons, T. V., & Davidson, R. J. (2013). Altered anterior insula activation during anticipation and experience of painful stimuli in expert meditators. Neuroimage, 64(1), 538-546.

Clinical indications for hypnosis

Who might benefit from learning hypnosis – and when might you suggest it?

I’m a person who doesn’t really try changing my own pain intensity very often, and most of the people I’ve worked with in therapy are also in the stage of wanting to learn how to live alongside their pain. However, there are some times when modulating pain intensity can be a really helpful part of even this phase of learning to live well with pain.

I haven’t found any clinical guidelines suggesting when it might be good to introduce hypnosis, so this is my own clinical reasoning. Remember I work with a particular group of people, and I have my unique approach and practice in pain management, so this reasoning may not resonate with you!

Hypnosis, for those who respond well, offers effective pain reduction (up to 40% for some, and on average, around 27 – 30% reduction), but it also offers effects other than reduced pain. Depending on the suggestions made during hypnosis, a person might feel pain as less distressing or intrusive, so that while pain is still intense it doesn’t bother them as much (see Jensen, 2011).

In my experience, hypnosis is great for pain reduction if the pain is likely to be short-term, or if the pain reduction from hypnosis doesn’t need to be long-lasting. The pragmatic reason for these suggestions is that hypnosis does take some effort both to learn, and to sustain. When thinking about reducing distress and the intrusive qualities of pain, I suspect these might be more about attention and interpretation and so I think developing a longer period of practice using hypnosis as a regular part of life is a good approach.

What does this mean?

Well, if someone has neuropathic pain with the nasty electric shock jolts from the blue, and the weird burning, tingling background pain, I like to teach self-hypnosis with an emphasis on feeling distant from the electric shock pains. My aim is to help the person experience less intrusion of these random intermittent pains, so they don’t get as caught up in the physiological arousal/sympathetic nervous system wind-up, and can calm their nervous system down quickly. This helps reduce the time these electric shock pains take up in a person’s day, and helps reduce the background nervous system irritability that in turn, seems to provoke and create the conditions for them to escalate.

The words and phrases I use will differ depending on the individual, but I suggest things like ‘you might notice a random electric shock feeling but it’s like it’s playing in the distance, maybe happening to someone else, or like in a dream and through mist.’ I add phrases like ‘you might notice a shock and each time you do, your body automatically remembers to breathe out and feel the contact of your feet on the ground, or your body on the chair, and you can quickly return to what really matters, what you were doing…’

Short-term use

If the person experiences period pains, then hypnosis to reduce pain intensity can be very helpful – it’s usually short-term, over a day or two, and hypnosis is easier to use through this time. In these cases, hypnosis that aims to reduce pain intensity and replace it with a more comfortable sensation can be good. For example, I might suggest ‘when you notice that deep gripping pain, you can also notice your lower back contacting the surface of the chair or bed, like a warm supporting hug, allowing that hard hot pain to melt into the gentle warmth of the hug as you feel the support of the chair or bed.’

Daily life use

Physical cues can be great for helping people access their hypnotic experience quickly. One of my favourites is simply holding finger and thumb together in a pinch. I introduce this during a hypnosis session, usually towards the end of the session before returning to everyday life. I invite the person to hold their finger and thumb in a pinch, and breathe in, hold it for a moment, then breathe out and let their finger and thumb relax. As we practice this several times, I suggest that the more firmly they press their finger and thumb together, the more they experience the peace and comfort of their hypnosis session, and the breath out will bring this relaxed experience into the present moment. I leave them with a post-hypnotic suggestion that every time they notice they’re feeling pain, or tension, they will press their finger and thumb together, take a breath in and hold it for a moment, then breathe out and relax and they’ll feel this wonderful sense of calm and comfort.

How can hypnosis be self-management?

Well, because hypnosis is a state, an experience, and not something done TO a person, I believe it’s something each person can learn for themselves. I work hard to teach people how to achieve self-hypnosis so they can implement it whenever and wherever they like. At the same time, I also often use recordings (people get given a recording of the session we did together so they can practice at home), and I personally used a recorded session for myself years ago when having trouble with sleep.

Want to try some hypnosis yourself?

deep-hypnotic-relaxation-with-cueDownload

Grab a phone and record yourself using this free and fairly standard hypnosis script (click). You’ll notice there are four main sections: the Induction, Deepening, Subject, and Awakening.

The induction guides you towards focusing your attention only on your voice, and also adds some ideas about deeply relaxing, still being able to attend to important things, but essentially becoming calm and comfortable.

Deepening brings your attention even more into the ‘trance’ state, or the point where you’re more open to suggestions.

The subject is all about what you want to achieve during this session – perhaps it’s sleep, perhaps it’s an efficient way to restore your energy, maybe it’s having pain not feeling as disruptive. It’s the time you can either rest in the calm of a trance, or add suggestions to help you experience what it is you want.

The awakening is the part where you bring yourself back to everyday life, becoming more aware of what’s going on around you, and yet also bringing back with you the sense of calm and comfort you experienced during your session.

Make sure your environment is quiet. Slow your voice down a bit. Give yourself lots of time between phrases. As you bring yourself back to everyday life, you might want to put some energy into your voice and quicken the pace a bit.

This script should take around 20 minutes to do. Enjoy!

Bicego, A., Rousseaux, F., Faymonville, M. E., Nyssen, A. S., & Vanhaudenhuyse, A. (2022). Neurophysiology of hypnosis in chronic pain: A review of recent literature. American Journal of Clinical Hypnosis, 64(1), 62-80. https://doi.org/10.1080/00029157.2020.1869517

Jensen, M. P. (2011). Hypnosis for Chronic Pain Management: Therapist Guide. https://doi.org/10.1093/med:psych/9780199772377.001.0001

Langlois, P., Perrochon, A., David, R., Rainville, P., Wood, C., Vanhaudenhuyse, A., Pageaux, B., Ounajim, A., Lavalliere, M., Debarnot, U., Luque-Moreno, C., Roulaud, M., Simoneau, M., Goudman, L., Moens, M., Rigoard, P., & Billot, M. (2022). Hypnosis to manage musculoskeletal and neuropathic chronic pain: A systematic review and meta-analysis. Neurosci Biobehav Rev, 135, 104591. https://doi.org/10.1016/j.neubiorev.2022.104591

Is it really depressing? Really living with chronic pain

Someone responded to my post Unpalatable truths about pain saying it was depressing. For a moment I thought – yeah, it is really. And then I reflected on my life living with, and working with people dealing daily with chronic, ongoing, persistent pain. It’s not inevitably miserable. Is there something wrong with me?

This, of course, set me to thinking maybe my pain isn’t as intense as others. Well – how would I know? I can’t give my pain a number out of 10. It’s just there and I can’t remember a time without any pain, so I can’t compare a 0 = no pain at all with anything I’ve experienced in the last 30-odd years. I do have times when a painful area is especially intense, but because I don’t know how intense ‘most intense pain imaginable’ could be (tell me who can?), and because I can’t remember a time with ‘no pain at all’, I really don’t know what number I’d give it.

I could turn to how much my pain gets in the way of what I want to do instead. This, too, is vexed. Given that I know my pain isn’t about tissue damage (no, I am not burning my tongue on that cup of tepid coffee, look it is only 40 degrees celcius! That bucket I’m carrying weighs only 2 kg, so no it’s not doing my hands any harm…), the real test of whether a pain is interfering with my life depends on how much I’m prepared to put up with it (and how long it’s going to hang around once I stop). If I’m sore when doing something I loathe (like vacuuming the house) I’ll stop sooner than if I’m sore doing something I love (like lugging 20 kg bags of compost around my garden, then digging it in!).

To a certain extent there is a truth in the belief that deciding to stop because of pain is an indication of how motivated I am. Hold a gun to my head and I’ll even run for you! But willingly do a marathon without that ‘incentive’ – yeah nah.

According to ICD-11 “Chronic primary pain is chronic pain in one or more anatomical regions that is characterised by significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles).” Italics mine.

I’ve highlighted two points: significant emotional distress and functional disability. I don’t think I’m distressed by my pain. It’s just there, like my rapidly greying hair and diminishing height. I’m not worried by it, angered by it, sometimes a little frustrated for sure, but not depressed by it. I’m also not significantly disabled by my pain. There are some things I can’t do, and many things I choose not to do (why go to a gym and sweat?!), but I don’t feel terribly limited by my pain. This could be because I’ve got so used to living around my pain that I have no idea just how many accommodations I’ve made in my life, for sure, but on the whole I do pretty much most of what I need and want to do.

I therefore don’t meet criteria for a diagnosis of chronic primary pain according to ICD 11.

And yet – my pain is with me all the time. I wrote recently:

I am calm and have pain.

I am excited and have pain.

I move and I have pain.

I stretch and have pain.

I breathe and have pain.

Pain is with me all the time, as I breathe in and breathe out. As I walk, sit, puff, stroll, chuckle, lift, dance, cry, and yawn.

Pain and I live in the same space.

Pain takes up more or less space as it fancies.

Today pain is cuddling my hips and pelvis and lower back.

I live alongside my pain and we do things together.

Waiting for pain to go before doing things would be a lifetime of boredom and frustration.

I breathe in and breathe out and pain and I embrace.

I read a piece in The Guardian today. It was about a woman, Wendy Mitchell, living with early onset dementia. She was 58 when diagnosed, a year older than I am. She’s now 67. Since her diagnosis she’s written three books, and started photography. Her description of why she photographs her world resonated with me. She’s described this way: “She walks for miles every morning with this camera, usually at dawn, looking for what she calls “the magic moments” in each new day. Just a few hours before my arrival, for example, she said hello to her favourite hares leaping and hopping in a nearby field. She beams as she recalls them.” She points to “Those tiny moments that disappear if you don’t look at them” like the birds singing, a towering tree in the mist.

Living with pain can be like this. Magic moments that are present then vanish unless you notice them. That hugged feeling around my lower back and upper legs right now as I sit at my desk and type. The warmth of my cardigan around my shoulders. The delicious stretch as I raise my arms to the ceiling for a change of position. Sensations that are as real as the ache in my neck, the burn in my shoulders, the tingling pins-and-needles in my feet.

Living is living, and it’s always a mix of moments of joy and of irritation. Openness and limitations. No matter what your body starts out like, it will change. We will lose aspects of our body capabilities as we age. When we live with chronic, persistent, ongoing pain, we also have those magic moments of comfort, pleasure, ease. As Wendy Mitchell says “Those tiny moments that disappear if you don’t look at them.” Clinicians, maybe it’s time to ask people to notice those moments? Clinicians, maybe it’s time to apply this approach to ourselves?

Carr, A., Cullen, K., Keeney, C., Canning, C., Mooney, O., Chinseallaigh, E., & O’Dowd, A. (2020). Effectiveness of positive psychology interventions: a systematic review and meta-analysis. The Journal of Positive Psychology, 16(6), 749-769. https://doi.org/10.1080/17439760.2020.1818807

Boggiss, A. L., Consedine, N. S., Brenton-Peters, J. M., Hofman, P. L., & Serlachius, A. S. (2020). A systematic review of gratitude interventions: Effects on physical health and health behaviors. Journal of Psychosomatic Research, 135. https://doi.org/10.1016/j.jpsychores.2020.110165

Swain, N., Lennox Thompson, B., Gallagher, S., Paddison, J., & Mercer, S. (2019). Gratitude enhanced mindfulness (gem): A pilot study of an internet-delivered programme for self-management of pain and disability in people with arthritis. The Journal of Positive Psychology, No Pagination Specified.

Persistent pain and movement practices

Here I go, stepping into “the bio” to write about movement. Oh dear, what am I doing?

Movement practices of various kinds are part and parcel of pain management. In fact, to read some of the material in social media-land, exercise is the be-all and end-all of pain management, maybe with a dash of psychology. Can we please stop doing this?

I’ve said it often, for many forms of persistent pain, especially the most common forms – nonspecific chronic low back pain, fibromyalgia, and osteoarthritic pain – movement is a good thing, but the effect sizes are small for both pain intensity and disability (eg Jayden, et al., 2021). I’ve reproduced the author’s conclusions below:

We found moderate‐certainty evidence that exercise is probably effective for treatment of chronic low back pain compared to no treatment, usual care or placebo for pain. The observed treatment effect for the exercise compared to no treatment, usual care or placebo comparisons is small for functional limitations, not meeting our threshold for minimal clinically important difference. We also found exercise to have improved pain (low‐certainty evidence) and functional limitations outcomes (moderate‐certainty evidence) compared to other conservative treatments; however, these effects were small and not clinically important when considering all comparisons together. Subgroup analysis suggested that exercise treatment is probably more effective than advice or education alone, or electrotherapy, but with no differences observed for manual therapy treatments.

So for chronic low back pain, short-term pain intensity reduction is clinically significant, but neither functional limitations nor pain intensity reductions over the long-term reached clinical significance. Ouch! This means that we must not oversell the usefulness of exercise as a panacea for chronic pain.

Some missing bits in this meta-analysis: how many people carried on doing their exercise programmes? Why did they keep on going if they didn’t experience reduced pain or better function? How many people dropped out from follow-up?

But my biggest question is “Why does increased physical fitness and reduced pain not translate into better function in daily life?” And of course, my next question is “What might improve the daily life outcomes for people with pain?”

I might also ask why there is so much emphasis on exercise as an approach for chronic pain? Why oh why? One reason could be the assumptions made about the reasons people have trouble with daily life activities. A reasonable assumption might be that people are unfit. Another might be that people don’t have confidence to move. But if these assumptions were true, we’d see better results than this. Perhaps we need to be much more sophisticated and begin to explore what really does impact a person’s daily life activities? My plea therefore is that we cease doing RCTs comparing exercises of various forms to placebo, no treatment or usual care. Please. We know movement is a good thing, and with the enormous number of studies carried out, surely we can stop now?!*

Here are some clinical reasoning pointers when employing movement practices. I’m being agnostic with respect to what form of movement practice [insert your favourite here].

• Find out what the person enjoys doing for movement/exercise. Aim to do this, or build towards doing this. Start low and build up intensity, load and frequency.
• Find out why the person has stopped doing their movement/exercise practice. If pain has stopped them, be curious about what they think is going on, what they think the pain means, what happens if they experience pain doing their favourite movement practice, and find out how long and how much they’ve done before pain stops them. Then address unhelpful beliefs, re-set the starting point and progress in a gentle graded way.
• If the person hasn’t ever been a movement/exercise person, be curious about why. Explore this in detail – beliefs about movement, movement practices they’ve tried, time available, cost, all the things that might get in the way of doing a movement practice. You might find it was a high school physical ed. practice that totally put them off – but look beyond “exercise” or “sports” and remember that movement includes walking, dancing, gardening, playing with the dog, fishing, kayaking….

When you’re starting to generate a movement practice programme, for goodness sake ask the person when they’re going to find time to do it, and don’t make it too long! Explore when might be the most convenient time, and what might make it easy to do. Use low cost, low-tech practices. Find out what might get in the way of doing the movement practice, and do some problem-solving – anticipate what goes through a person’s mind and together, come up with counter-arguments or better, think of some really important values that might underpin the reason to do what is undoubtedly difficult for this person in their life.

Think about life-long habits and routines. How might this person explore options that could fit into their life as they get older? What might they do if the weather is bad, or they have an addition to the family? How many different movement practices can you and the person think of? And remember, if it’s OK for a person at a gym to do “leg day” one day, and “arm day” another, it’s perfectly fine for someone to do gardening one day, and go for a walk up the hill the next. Don’t be boring! Invite exploration and variety.

Work on translating the movement practices you and the person do in clinic into the daily life movements the person is having trouble doing. This might mean asking the person about their daily life and what’s most difficult for them to do right now. If it’s bending to load/unload the dishwasher, ask them what’s going on, what comes up for them when they do this? Is the problem about physical capability – or is it because it’s at the end of a long day at work, they’re tired and haven’t been sleeping and they’re worrying about how the pain in their back is going to affect their sleep tonight? If it’s the latter – guess what, physical exercise isn’t going to change this! So talk about what they can do to help with their sleep, or if that’s not your forte, talk to another team member (occupational therapist, psychologist) about what might help.

Note that as clinicians, we have no right to dictate what a person’s life looks like. This means we can’t judge a person for their choice of movement practice. We also can’t dictate how often or how intense their “workout” should be. It’s going to vary, depending on all the things this person in front of you values most. And we must respect this – don’t be judgemental, their values may be very different from yours, and this is perfectly OK. Just help them explore the good – and not so good – of their choices.

Finally, don’t be afraid to have fun with movement! Play a little. If disc golf is the person’s thing – go try it out! If jive dance is their thing, maybe it’s time you gave that a go. If they like hiking to a quiet spot to do a little bird photography, go with them and carry your own camera gear. If their life is so busy that movement practice gets squeezed out, work with them to find ways to get movement snacks into their day. Don’t be boring. And worry a little less about “prescribing” movement, and much more about experiencing your body as a living sensory being – get in the moment and enjoy what your body is able to do. That is really what we’re encouraging in movement practices for chronic pain.

*A couple of other guesses for why exercise gets seen as The Best Thing – it’s “cheap” in comparison with other options, people can do it reasonably easily after therapy, there are LOTS of physiotherapists and others who offer this, it appeals to our “simple” (but wrong) beliefs about pain, psychological approaches are more expensive (though don’t offer better outcomes), daily life occupational therapy approaches are really hard to conduct as RCTs….

Hayden JA, Ellis J, Ogilvie R, Malmivaara A, van Tulder MW. Exercise therapy for chronic low back pain. Cochrane Database of Systematic Reviews 2021, Issue 9. Art. No.: CD009790. DOI: 10.1002/14651858.CD009790.pub2. Accessed 18 December 2022.