Pain Concern

Using creative writing to better represent the chronic pain experience

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This edition of Airing Pain has been funded by the Arts and Humanities Research Council.

Chronic pain often exists in ways that cannot be seen. Due to the intangible and ambiguous nature of many chronic pain conditions that lack clear-cut causes and treatment, patients feel frustrated when communicating with healthcare professionals, personal networks, and the public at large; they feel ‘invisible’. Lancaster University’s English and Creative Writing department has built a research network to collect short-form ‘flash’ illness writing; pieces that aim to better represent people’s experiences of chronic pain.

In this edition of Airing Pain we hear from the project’s Principal Investigator Dr Sara Wasson about the many components that make up the project, its origins, and the goal of conveying the experience that millions of people go through every day.

Issues covered in this programme include: Arts and crafts, communicating pain, creative project, creative writing, culture, describing pain, educating healthcare professionals, explaining pain, inequality, intersectionality, misconceptions, muscle spasms, personal experience, poetry, representation of pain, spasmodic torticollis, stigma, visibility and writing.

Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for health care professionals. And this edition of Airing Pain has been funded by the Arts and Humanities Research Council.

Multiple speakers: I want my mom. I want my mom. I want my mom… and Pain that just backs off for a while. The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the Pain… I want my mom… A rookery, long abandoned now, had been built inside my body. I don’t know where the birds went or why. One day, they uninhabited, leaving only their barbed-wire residues, strung across the boughs of my hips… I want mom. I want my mom… This deep, stabbing pain in both temples. The buzzing flight of sugar-fuelled hummingbirds. The way my entire body is filled with pain and unable to move from this chair… I want my mom. I want my mom…

Evans: In the previous edition of Airing Pain, we talked about how pain is measured; measured, that is, by scientists. As patients, however, whilst doctors may be able to assess our pain, rarely I suspect do we have the ability to communicate our private and deepest feelings about living with pain at any one given moment. As Pain Concern’s own ‘Breaking Barriers’ research project illustrated only too well, people living with chronic pain repeatedly report being marginalised and stigmatised by health care professionals, their personal networks, and the wider public. This invisibility, according to researchers at Lancaster University, is partly because chronic pain can be hard to turn into a story because of its unpredictability and resistance to clear cause and cure. So, rather than offering life story narratives to make sense of living with chronic pain, the university’s ‘Translating Chronic Pain’ Critical Creative Project focuses on representing fragments or moments of chronic pain experience through what they call ‘flash’ illness writing.

Sarah Wasson is a lecturer at the English Department in Lancaster University. She’s leader of the ‘Translating Chronic Pain’ project.

Sarah Wasson: Well, the project is really quite broad and has many components to it. But the bit that I’m going to talk about now is the creative project. And in that there are two particular sections, [but] the most significant [has] been the online anthology. We’ve asked people around the world to write short fragments of between five and 150 words that respond to or capture something about the experience of living with pain, or caring for others with pain, or working through some aspect of pain experience in the broader sense. So it’s a very broad call. The call for work was… we made it into a poem, after a collaborative project with pain charities and others. I felt very strongly that, if we were going to do a project like this, the goals of the project had to be specified and conformed collaboratively right at the beginning among many of us living with pain, pain charity representatives, medics, and academics. And it’s very important to me that, the whole way through, the project has not been about academics in one box, and people living with pain in another. Almost all the academics involved have either lived with pain themselves, or care for others who do. So there’s a lot of overlap between the creators and the academics and the people in pain. Many people are all three. We brought lots of people together and explored what short writing form might do; how it might be good, how it might be dangerous, what might be promising, and the perils of it, too. After that, I wrote the poem, which is kind of a call to arms – a manifesto. Shall I read it?

Evans: Yes, please.

Wasson: ‘Call for Creative Work: Creative Manifesto – Translating Chronic Pain’:

SINCE people living with persistent pain often suffer invisibility and struggle for legitimacy and credibility;

since long term pain is often assumed to be a temporary and unnatural state;

since pain experience is diverse and must be understood intersectionally (through interweaved categories such as gender, race, sexuality, and class);

since pain’s causes can be cryptic, multiple, personal, social, environmental, transgenerational, and hidden;

since pain science is neither widely understood nor well-funded, and requires wider dissemination;

since pain experience exceeds the language of medicalisation;

since pain undercuts illusions of human autonomy and self-sufficiency, showing all people are vulnerable and interdependent;

since pain may impair the ability to work, in which case those living it may be seen wrongly as not living a ‘useful’ life;

since witnessing pain makes profound claims on – and poses challenges for – carers, family members, and healthcare practitioners;

and since chronic pain affects every dimension of life…

…I call for creative work that engages these invisibilities, these lacunae, these intersections – moments in public or in shadows, in loneliness or connection.

YET – pain experience may not lend itself to established forms of either illness narration or survivorship story:

the experience may lack an ending where resolution is reached;

it may lack a beginning, its causes hidden;

it may break the positivity imperative – to be hopeful, a warrior, a survivor, a meaning finder;

it may be incommunicable, resisting representation, yet may simultaneously engender language;

it may be a story not (only) of a personal journey, but of wider social calamities and inequalities:

and it may resist plot, instead being a thing of fragments, glimpses, and moments.

Evans: This is the first time we’ve met. I don’t think that somebody who wrote that would not have experienced chronic pain.

Wasson: [laughs softly] Well, I can’t take full credit for writing it because it was… it emerged from the creative summit. But yes, I definitely do live with pain myself. I’ve got about – I think, at the last count – eight different ways in which… conditions [in] which that is part of it. I don’t generally share that as the first thing in the project, though, because I felt very strongly right from the beginning that I don’t want to limit the pain story or in any way set myself up as an authority. So I tend to be in the background with that.

Evans: It’s very interesting; you were talking about storytelling involving chronic pain. I can’t think of many great stories in popular fiction or television dramas, in fact, that feature chronic pain.

Wasson: I was thinking about this this morning, actually, when I was looking again at Virginia Woolf’s famous and amazing essay on being ill. And there’s that extraordinary line there, where she talks about how, when it comes to describing a headache, there isn’t really a long lineage of literary representation. And instead, what she says she wants to do is to grab the pain in one hand, and a lump of sound in the other, and squash them together to create something primitive, sensual, and obscene, which is an extraordinary kind of call for innovation. And there are many ways in which poets – and I’m thinking again of Emily Dickinson, in particular, actually – have tried to bend language in the way Virginia Woolf called for, but there’s still more to be done because there is something so subjective and elusive about that experience. And to get it to be taken seriously.

One of the things that probably drove me to do this – bring all these different activities together – [was] profound sadness at how much social science research has shown people living with pain feel invisible. And the word ‘delegitimate’ gets used a lot somehow – not rendered valid. And this came out through so much research, across all different countries I was looking at, and it’s a tiny response to that, I guess. It’s a way of trying to find ways of vividly communicating in short form. Also for hearers, to try and help [to make] the reality of that experience more available to people who perhaps don’t have that experience. It’s to try and help people on all parts of the continuum. That’s the hope.

Evans: Holly Hirst is a PhD associate lecturer. She has chronic pain and contributed to the ‘Translating Chronic Pain’ project.

Holly Hirst: I wrote two pieces about, sort of, different aspects of living with pain. One was about sort of the spiritual aspect, and one was about communication, I guess. So, one that I wrote was ‘The Exorcism of Spasmodic Torticollis’, which is what I have.

Evans: Spasmodic Torticollis… What is that?

Hirst: It’s an inherited neurological condition, which is one of the dystonias. It means that I can’t control the muscles in my neck frequently, and so that they spasm, causing pain, and that has… It can also spread through the body, so my arm and shoulder and top of my back are also spasmodic. So:

‘This is my best exorcist impression,’ I tell you with a grimacing grin.

I tell you it’s a horror movie to make you laugh. So that you can laugh at the girl controlled by demons. As her head turns full circle on her neck. As her smile screams with silent blasphemy. Because if you don’t laugh, you turn away. You’ll never follow Karras through the window. You’ll turn and walk downstairs, sit with Chris and hope it goes away.

Evans: The other fragment is ‘Doubt There Is No God’.

Hurst: So:

There is no God. I know it. I feel it in this agony. This violence. As my brain tricks my body into ripping itself apart. There isn’t. There can’t be. Please God. There can’t be.

One of the things that I really appreciated about this project is the ability to convey a moment, rather than to convey a narrative. And this idea that this could be a moment of thought, of experience that you have – that it doesn’t have to be a summary of your whole story. But those moments of desperation when, you know, you wake up in the middle of the night, and your body’s screaming, and there’s nothing you can do about it. When you’re trying to achieve something that you simply can’t achieve because your body won’t obey you. When you’ve been spasming for a couple of hours, and you can’t do anything about it, and people tell you things like, ‘Well, it’s all in God’s plan,’ or…

Evans: ‘I know how you feel.’

Hurst: ‘I know how you feel.’ And what your brain tells you – what your body feels – is that that cannot be true. Because this is so horrendous. When people say things like, you know, ‘The creation of the body is a wonderful thing,’ I don’t know what went wrong with mine. [laughs] So it’s that kind of experience, that kind of moment, without trying to put it within the context of humour, or telling a story about my whole, sort of, journey of faith. But just that moment that’s very real, I think, when you’re in it.

Evans: The fragment of time, the moment… We’re not talking about ‘This is my illness; this is how it affects me from day to day.’ It’s my thought, at a certain time.

Hurst: Yes, one of the pieces that moved me most: one simple phrase repeated multiple times. And that spoke to me a great deal because that is the experience that you have. I mean, I don’t know about everyone else, but my brain skips when I’m in pain. So I can’t think – I get stuck. It’s like my brain stutters, and that thought will just come again and again and again.

Unknown speaker: ‘I Want My Mom’ by Socks.

i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom i want my mom…

Evans: Those feelings… I think many people with chronic pain have actually felt that. You know, we know all the management techniques – this, that, the other – but there are times when you just think ‘I hate this.’

Wasson: Yeah… This is something that I was so grateful to see happen. I didn’t know what kind of range of work we would get, but the emotional range has been colossal. So there have been works of a hopeful moment, and which we all have also. But somehow the fact that it was a moment or glimpse meant people were freed from the compulsory optimism of the long story, which is a bit of a fierce way of putting it. People living with pain do have to internalise certain kinds of management strategies that do tend to orient more towards the hopeful. But this kind of seemed to give a safer space where people could explore a range of emotions, which weren’t always totally just upbeat – they were a range. One of the poems that came early in, and I would love to read, was Roseanne Watt’s ‘The Diagnosis’. I thought this was such an extraordinary work because it captures that suspense and fear that can attend on a diagnosis [while], of course, on the other hand, many people living with pain do not get one – do not get a diagnosis – and really would like one to be taken seriously, as well. So, this is what Roseanne wrote about with ‘Diagnosis’:

A rookery, long abandoned now,

had been built inside my body.

I don’t know where the birds went

or why, one day, they uninhabited,

leaving only their barbed-wire

residues, strung across the boughs

of my hips; all sticks and spit,

all hollows meant for holding

something small, still desperately

alive. I’m sorry – I’m afraid

I know only my own dark canopy,

its filtering bones of light

Evans: It’s very, very… moving, and obviously very, very personal. I don’t know what condition Roseanne lives with, but there is a common sort of feeling. I thought when I found out about this, ‘Well, I’m going to write something myself.’ I couldn’t do it.

Wasson: [gasps in astonishment]

Evans: Because it was almost like, learning to live with a condition, you are conditioned to that condition, and I don’t want to step off that condition, and let my barriers down, if you like.

Wasson: Yeah… Very interesting.

Evans: Because a lot of these are pretty dark.

Wasson: Something that’s been very striking in the way that people have responded to the project, the email and the feedback that we’ve had, which has been very moving, has been relief at the validation of those moments, actually – of the not feeling alone, and the waking at 3am, as you said, Holly, you know. Without saying that despair is the only way in, I think it sometimes is part of the moments and fragments. And I guess if part of that’s what this anthology is showing, then I’m glad.

Unknown speaker: ‘pain and Pain’ by M-S-Y from the United States.

The difference between lowercase-p, pain, and uppercase-P, Pain, is huge.

Bigger than just a shift-key should make it.

The difference between ‘Yeah, let’s go on a hike today!’ and ‘I can’t walk today.’

The difference between pain that ends, and Pain that just backs off for a while.

The difference between the morning pills and the afternoon pills and the evening pills and the night pills and the pills and the pills and the injections and the appointments and the Pain.

The differences between the screaming in your head and the screaming locked in the gilded cage in your throat, and the knowledge that it is a bird that will never die, it will just remain in you, like a bird throwing itself against a window pane. Yes, pain and Pain are so completely different, I can’t believe they’re even spelled that same way.

Evans: Ones that I found rather moving, and I think – perhaps I’m wrong here – it’s about relationships, it’s about loneliness…

Wasson: Yes, this beautiful fragment by Lucy Goodwill:

She is struggling with the concept of her body as a sensual object. She lifts the covers, brings her feet to meet the floor and winces as she stands. Legs laced with his now buckle as she walks, and shockwaves sparked by his touch are replaced by short-circuiting pain in her nerves.

Soft lips, coarse hair, hot skin, cool sweat, forget the pain, leave that ‘til morning.
She makes it to the door; tries not to wake him so he won’t see her transformation. From time to time she indulges in the mythology of her beauty; an existence where physicality means something other than her suffering.

She pours the coffee that will focus her, swallows tablets that will soothe, takes a shower and embraces the heat that reaches deep into her bones. She follows the steps that will make her feel human and, symptom by symptom, she rebuilds the myth.

Evans: It’s written in the third person, but I’m assuming it is that she is the person. To me it appears it’s somebody looking in a mirror at somebody who’s not there.

Wasson: The extraordinary thing that strikes me through a lot of the writing in the project, and indeed in a lot of the other writing around chronic pain in memoirs, is the strange play of absence and presence to the self. The ways in which, in some ways, one’s experience becomes so… almost overwhelmingly alien, and one’s body becomes deeply estranged sometimes. And I think that the third person captures it so well. [Also], what I love so much about this poem also is it shows how pain affects subtle, intimate parts of life. And, in this case – both her romantic and sexual relationship – it’s of the persona and the speaker, but also the sense of one’s own appearance, and the labours – the everyday, ordinary labours that everyone does… kind of, you know, hygiene – that become much more complicated and interesting. And the myth of her beauty, the mythology of her beauty, is something that’s presented as achieved with extra labour effort. It’s almost a lie, yet a lie that she’s invested in.

Unknown speaker: ‘Food for Thought’ by Ryan Michael Dumas.

Just got a letter from disability insurance: Denied. I’m not disabled enough to get anything. After months of trying to convince them.

How do you prove you can’t work?

I cannot sit up, stand, or walk hardly at all. There is no job I can do while laying down, without having to make phone calls.

Just laying here, my back aches. But it’s the most comfortable position I can find. (It hurts my hips but those aren’t important.)

If I dared to sit up, my lower and upper back would scream in agony. It would not end until I laid back down.

I couldn’t keep working; had to move back in with my toxic parents. I have no money, no freedom, and no chance. I have no future. And that terrifies me.

I’m a survivor. The world wants me dead. It’s only a matter of time.

Evans: The creative arts have been used as a way of managing pain. Music, going to sing in a choir, group participation in the arts… But this is much more digging into yourself – private stuff.

Wasson: On their own, each one is a kind of separate jewel, [and] can seem quite, perhaps, introspective and… kind of individual. But the mass of all nearly ninety of them together, and the way that one navigates through the site using the ‘randomiser’ button, for example, makes them feel like they come into interesting points of tension and conflict and reinforcement. So it’s a very vibrant encounter, I found, and the credit for that must really go to Zoe and our other colleague, Jenn Ashworth, who had the idea for having that navigation interface.

Zoe Lambert: I’m Zoe Lambert. I’m a writer and lecturer in creative writing. I run one of the workshops to help develop writing in pain and chronic pain. Sarah asked me to be involved because I’ve done quite a few community-based workshops; also because I come from experience of pain as a carer. And, having witnessed the unusual forms of pain, of multiple sclerosis, that my mother’s had for twenty years… [and] how sometimes she’ll try to describe the strange sensations, and really struggle because it’s not just ‘Oh, it hurts’ – it’s a lot different. And that really influenced my approach to the workshop because I was thinking around touch, and ways of describing sensation and feelings, and brought that in, in different ways, in the kinds of activities we ended up doing on the day.

Evans: As a carer, highly involved with something – an outsider, in many ways, looking into somebody’s pain.

Lambert: Yeah, I kind of appreciated what you said before around finding it difficult to start writing about pain. And, in the workshop, I kind of wanted the activity to offer ways in – in how you might describe pain through metaphor and images. I did a warm-up exercise around fabric, which [hasn’t] really got anything to do with pain, but I was thinking more about sensation, because even how [you] describe sensations and how things feel like isn’t easy. So I brought in lots of pieces of fabric – you know, cut offs. I saw some, kind of, scratchy, soft things – fluffy, feathery – and used that as an opening exercise to write about the fabric and how it made you feel, and the sensations, and then, kind of, words that you associate with that feeling. And the sensation of touching it, and then if any images or memories were then generated from that. So, kind of using this idea of touch as a way to think about our body and how we feel, because you’re not having to write anything personal there – it’s more about the fabric.

And I often find that objects are very useful for tricking people into writing without worrying about it… and overthinking. From that, thinking about how you can write about pain through images and metaphors, and getting the participants to write lots of different ones. So that you’re not… you don’t feel like every word has to be precious. So, pain is a colour, an object, a place, a number, a city, a time of day, a sound, and [also] what pain isn’t. And so, with the same idea: so, pain is not a colour, pain is not a certain object or place. If you write quite a few of them, you’ll have lots of different ones, and maybe just one stands out, and you like that, and you’re like, ‘Aw yeah,’ and then running with one and developing that idea. And, oh look, you’ve got a poem – and without even trying.

And also, I was interested in medicalised spaces as well. If you’re ill or a carer, you often spend a lot of time in doctor’s surgeries and waiting rooms and hospitals, which are very particular. And they smell certain ways, don’t they? And there’s a certain kind of look to them. So, I got participants to kind of write about that and… and I think that’s another way in, and that sense of a moment, a moment of waiting.

Unknown speaker: The way the scent of the air changes as the day goes on: the warming sweetness of morning; the sharp resin of fir trees as the sun heats the day; the cool, soft evening air with the ground and lake and all the waving leaves mixed in. The way the early evening light strikes the birches and makes them chiaroscuro dramatic. The way my feet burn. The smudged charcoal underbellies of terns over the green water. Their sliding paths through the air. This deep, stabbing pain in both temples. The buzzing flight of sugar-fuelled hummingbirds. The way my entire body is filled with pain and unable to move from this chair. Heavily, here, just so. That bird, there, hopping from branch to branch. Almost hidden. The feel of my skin as a gentle breeze touches the side of my face. The things I long to do. That dragonfly, there, and the sun behind its wings. Every dancing leaf. The air again: changing.

Evans: ‘In Stillness’ – a fragment, a moment, contributed by D. Phoenix from Canada to the ‘Translating Chronic Pain’ project.

Now, I just need to remind you, as I always do, that we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available. You should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you, your circumstances, and therefore the appropriate action to take on your behalf.

You can download all editions of Airing Pain from Pain Concern’s website, which is… painconcern.org.uk.

The ‘Translating Chronic Pain’ project is ongoing, so we can carry on submitting our own moments or fragments at the permanent website, which is: wp.lancs.ac.uk/translatingpain. Or just put ‘Translating Chronic Pain Lancaster’ into your search engine.

Wasson: The site has a lot of resources on it that would be of interest, including pain support, and information on the academic dimensions of the project. But the absolute priority of the site is the Anthology, and the Creative Manifesto, and we welcome submissions from anybody who feels moved to contribute. We don’t mandate that they have certain kinds of pain, or that they are living with pain, or that they are specifically carers or practitioners, and it’s international.

Evans: What sort of advice would you give to people who are listening to this now, who would like to write something, but they don’t know how to do it?

Lambert: Get a nice new notebook, first of all. If you’ve followed the metaphor ideas, and then, kind of, the idea of listing different images, or ways in of describing pain, and doing a lot of it, and then writing lots of different images. There’s a lovely writer called Natalie Goldberg, who’s written a wonderful book called ‘Writing Down the Bones’. And I think that’s an amazing book for helping people to start writing, and throw off the shackles and fears, and any little voice in your head that might be saying, ‘Oh, you’re no good – you got terrible marks at school in English,’ you know, or anything like that. And because it’s all about practice… And starting a diary can be really good. The daily practice of writing, of just getting your thoughts and feelings down, and not judging yourself as well, not letting that little voice in here say, ‘Oh no, no one wants to listen to what you have to say’ – anything like that. But just getting it down. And I think building up a writing practice of writing every day is really important. We always expect ourselves to write brilliantly the first time. That’s not true. So you have to let yourself develop your voice and just get words on the page.

Wasson: There’s a lovely poem that’s occurring to me now by Ruth Victoria Chalkley, who submitted several beautiful works. And it’s a response to getting new splints. So, taking just a moment, thinking of the moments and glimpses as an empowering framework, you know – just a moment in a day – she gets these splints, and she thinks about how they rattle, and kind of scrape, especially when they’re new and [scratchy], as many of us will probably remember. So, little details like that – taking a detail and just hanging out with that detail, that moment of time, without the burden of trying to make sense of one’s whole life in prose. Just, where are you right now? Sitting in your chair, standing, moving, thinking about something… Just that moment. Let’s have that glimpse. Let that glimpse breathe.

Hirst: For me, the thing that I would say is: take the thought that you keep having that you can’t tell people about – that you don’t express to people. So, for me, for example, ‘There is no God’ – that’s a thought that’s gone through my head multiple times. But it’s not something you talk about because then it becomes a narrative and a drama. A phrase that you know that the people who you’re with won’t be comfortable with you saying. Things like ‘Don’t go away, don’t touch me… right now,’ and you can use that, and develop from that. Use those things that you’re not allowed to say or you’re not allowing yourself to say, and work from there as another sort of place to start. Or take the thing in the other poem that I wrote; take the thing that you always say but that you’re hiding behind, and let yourself be seen behind it.

Evans: And, what I would say, whether you write something or not, just read them, and that might inspire you to write.

Wasson: I think it really will because there’s so many different ones, aren’t there? There’s such a range of voices, and so inspiring. Many people using photographs and artwork alongside it, too. Each really giving you a momentary glimpse. And, the more, the better, because pain needs to be seen and needs to be heard.

Contributors:

Dr Sara Wasson, English and Creative Writing Lecturer, ‘Translating Chronic Pain’ Lead Investigator, Lancaster University
Holly Hirst, PhD and Associate Lecturer in English, Manchester Metropolitan University
Zoe Lambert, Lecturer, English and Creative Writing, Lancaster University.

More information:

Translating Chronic Pain website: http://wp.lancs.ac.uk/translatingpain/.

Contributors:

Dr Sara Wasson, English and Creative Writing Lecturer, ‘Translating Chronic Pain’ Lead Investigator, Lancaster University
Holly Hirst, PhD and Associate Lecturer in English, Manchester Metropolitan University
Zoe Lambert, Lecturer, English and Creative Writing, Lancaster University

Transcribed by Georgia Gaffney

Using creative writing to better represent the chronic pain experience

This edition is funded by the Arts and Humanities Research Council.

Chronic pain often exists ways that cannot be seen. Due to the intangible and ambiguous nature of many chronic pain conditions that lack clear-cut causes and treatment, patients feel frustrated when communicating with healthcare professionals, personal networks, and the public at large; they feel ‘invisible’. Lancaster University’s English and Creative Writing department has built a research network to collect short-form ‘flash’ illness writing; pieces that aim to better represent people’s experiences of chronic pain.

In this edition of Airing Pain we hear from the project’s Principal Investigator Dr Sara Wasson about the many components that make up the project, its origins, and the goal of conveying the experience that millions of people go through every day.

Contributors:

Dr Sara Wasson, English and Creative Writing Lecturer, ‘Translating Chronic Pain’ Lead Investigator, Lancaster University
Holly Hirst, PhD and Associate Lecturer in English, Manchester Metropolitan University
Zoe Lambert, Lecturer, English and Creative Writing, Lancaster University.

More information:

Translating Chronic Pain website: http://wp.lancs.ac.uk/translatingpain/.

How pain’s subjectivity makes it difficult to measure, rewiring the brain and new research that allows patients to visualise their pain

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This edition is funded by the Plum Foundation.

In this edition of Airing Pain, returning contributor Mark Johnson, Director of the Centre for Pain Research at Leeds Beckett University, speaks to Paul about the experimental methods used in their lab to measure how pain is experienced. Professor Johnson emphasises the difficulty in communicating one’s pain, as it is entirely context-driven and based on the experiences of the patient.

Paul then heads to Manchester University to speak to Professor of Neuro-Rheumatology Anthony Jones. Paul learns about the different techniques used to measure the alpha waves produced by the brain when pain occurs, how the anticipation of pain is as important as pain itself and the difficulties that scientists encounter when trying to emulate these signals. We also hear about the brain’s ‘plasticity’ – its ability to rewire connection based on sensory experience.

Anthony’s research team are developing a ‘smart neuro-therapies’ platform (which you can get involved in, see ‘More Information’ below), a way for patients to measure their brain’s alpha waves, which are important in controlling sensory experiences. The research could have significant implications in pain management. The team are employing a unique collaborative theatre piece, Pain, the Brain and a Little Bit of Magic, to help patients, healthcare professionals, and the public to understand these complex systems.

Issues covered in this programme include: Brain imaging, brain signals, communicating pain, electroencephalography, fibromyalgia, neuro-rheumatology, neuro-therapy, neuropathic pain, research, rewire the brain, sleep and trigeminal neuralgia.

Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK charity that provides information and support for those of us living with pain and for health care professionals. I’m Paul Evans and this edition of Airing Pain has been funded by the Plum Foundation.

Mark Johnson: I’m a pain scientist, I’ve been in the field for well over 20 years. And the longer I’m in the field, the more I become uncertain about how we try to document pain in research settings.

Evans: How do researchers measure something as subjective as pain? On a standard pain rating scale, that is where zero is no pain and ten is extreme pain, someone might rate today’s pain at eight, but a much better, more bearable five the following day. It might be the same level of pain, but the experience of it is different. Mark Johnson is Professor of Pain and Analgesia at Leeds Beckett University. He’s also director of its Centre for Pain Research.

Johnson: One of the things we do in our lab is to use experimental pain techniques that are, in the main, non-injurious. So these are what we would call transient, temporary interventions whereby, for example, we might press a pressure probe on to the skin and keep pressing it until the person says that it’s become painful. And then we measure the pressure that it took for the person to first experience the pain from the pressure probe, and we call that pain threshold. But as soon as you remove the probe, then the person’s pain disappears, pretty much immediately.

Our other techniques involve, for example, plunging a hand into a bucket of icy water, and the person has to keep the hand in the water, tell us when they first feel the experience of pain, which we measure as pain threshold, and then we may well ask them to keep their hand in the bucket as long as they possibly can. And to take it out when they can no longer bear the pain from the ice water. And when they take their hand out, then we measure that time as the time-to-pain tolerance. And of course, when they take their hand out, then the pain starts to disappear quite, quite rapidly, and there’s no lasting damage from that type of technique.

Evans: It’s quite interesting because pain is subjective, and even from a day to day point of view, pain is different. I can remember being asked for years and years ‘Are you in pain?’ and you say ‘No, I’m not in pain, I’m aching’, but aching is pain.

Johnson: Yeah, yeah. Pain is exactly what the person says it is. Pain is subjective. So we’ve got no objective measure of pain. There’s no probe that we can put on somebody that will identify that that person is or is not in pain. So as a consequence, pain is very much about a person’s ability to communicate their sensory experience, the sensations that they’re feeling at that moment in time. For them to do that is really all about when they decide to use particular words to describe those sensations. Whether it’s an ache or a pain is really determined by that person and the context in which the question has been asked.

I’ve always been concerned about scaling pain. Often patients are asked ‘Can you tell me on a scale of one to ten, how much pain you’re in at this moment in time? Where one’s minimal pain and ten’s the worst pain imaginable?’ And that’s actually quite hard to do. I don’t convert my pain into numbers.

Evans: It’s very difficult.

Johnson: Absolutely. And there’s a little bit of an assumption that that scale is linear. Certainly, we know that if you compare somebody’s pain intensity rating of five with somebody else’s pain intensity rating of five, you cannot say that those two people are experiencing the same intensity of pain, because pain is personal to them.

I prefer using scales that are more descriptive. My pain’s moderate, my pain’s severe, my pain’s mild. I think you get a better insight into what the person is experiencing when they’re using those sorts of terms.

And yes, when do you convert an ache into the sensation of pain? Well, again, it’s the context. If you’re in a pain clinic, and you’re trying to explain to a physician, for example, that you’re experiencing something that is really quite distressing, you might use the word pain. But if you’re in a, I don’t know, a social setting, you might just use the word ache. So pain’s very much dependent on the context in which you’re expressing it.

Evans: So what sort of experiments are you doing in here?

Johnson: We’ve got two main themes. We look at factors influencing an individual’s response to a noxious stimuli. We call it pain sensitivity response and that’s things like the age of the person, the gender, the sex of the person, ethnicity, and body fat composition, for example. So that’s one strand that we look at. And another strand is the factors that influence a person’s response to treatments, mostly non-pharmacological treatments. I’m particularly interested in TENS, acupuncture, things like kinesiology taping.

Evans: What sort of results have you found?

Johnson: With respect to the factors influencing individual response to noxious stimuli, painful stimuli, we found that gender role does seem to have an influence. So it’s well-established in the field that the pain threshold of women tends to be lower than the pain threshold of men. And there’s been a debate of whether that’s just that women are more likely to report pain more readily than men, or not.

Animal studies suggest that actually, there’s a biological underpinning to that finding. In our studies, we have found exactly the same, that women express pain more readily than men in laboratory settings and that their pain threshold and pain tolerances are lower than men.

And what’s quite interesting about our work is that we found that that seems to link into what’s called gender role. It’s a societal view and in certain societies, that men need to be tough. For example, they need to be able to withstand pain and situations in which they’re experiencing pain. We’re finding that that sort of plays out in the studies that we’ve been doing in the lab. And that seems to go across culture as well. We do quite a lot of work on people from Arab countries, from the Middle Eastern, North African countries. We found that that gender role seems to play across into those cultural settings as well.

Evans: Some people might be surprised that women’s pain threshold is lower than men. Particularly in the UK, where we have this thing called man flu, just anything will send us to bed in agony, whereas women carry on.

Johnson: Yeah, but as I said earlier, pain’s all context-driven. So I think it’s the context in which you’re expressing how you feel. So in a laboratory setting, the subjects do know that it’s an experiment that will be comparing men against women. So I think there’s a whole load of factors that play out in that setting.

Men will express their man flu more readily, perhaps in a societal setting because they’re wanting sympathy from their wives, their partners, their friendship group. Men tend to not express (I find being a cyclist), those sorts of ailments as much when they’re with their fellow sporting colleagues. Now I’ve got no research to back that up. But I think it’s just that idea that context really drives the way that we express how we feel.

Evans: Men maybe don’t want to show other men that they’re in pain, the alpha male of the group and things like that, I suppose.

Johnson: Yeah, yeah, yeah. I think there have been studies done but they’ve looked at these sorts of settings where you’re doing, say, the cold plunge experiment. When there’s been a female observer and a man participant, and a man observer and a man participant and playing that dynamic out, the investigator’s gender and sex is also quite important, I think.

Evans: Professor Mark Johnson, director of the Centre for Pain Research at Leeds Beckett University.

So there are many variables to take into account when one is measuring pain. Wouldn’t some form of diagnostic readout like we have in the motor industry be very handy?

Anthony Jones is Professor of Neuro-Rheumatology at Manchester University where he leads the Human Pain Research Group.

Anthony Jones: We call all the different ways of trying to get a readout of what the brain is doing ‘functional brain imaging’. So that’s just a collective term for different types of ways of measuring what the brain is doing. There are a number of different techniques. Electroencephalography, which we use a lot, which is recording electrical signals on the surface of the scalp. So this is a non-invasive technique and that’s able to pick up conversations that are going on in the surface of the brain.

Evans: Hang on, now, what do you mean [by] ‘conversations that are going on in the brain?’

Jones: The way that the brain communicates with itself, and different parts of the brain, is through sending electrical signals and receiving electrical signals to different parts. So, if you imagine a huge number of circuits, some very small, some very extensive, all communicating with each other at the same time. Of course, many regions of the brain are doing many different things, and doing some of those things at the same time. So it’s a very complex organ to try to understand.

Evans: So the brain is talking to itself, if you like, or different parts of the brain are talking to itself?

Jones: Yes.

Evans: Is there a point in the brain that is purely involved in pain? Is there a pain centre in the brain?

Jones: Well, that’s a really interesting question and it’s preoccupied neuroscientists for many decades, if not a century, and the conclusion has to be no, there isn’t a single pain centre. In fact, this is one of the pieces of work that we did right at the beginning of my career when we were the first group to use a technique called positron emission tomography, which is a way of measuring blood flow, and other chemical changes in the brain.

Before the advent of functional brain imaging techniques, the only way you could access how the brain might be responding to pain was actually by sticking electrodes or stimulating different bits of the brain during neurosurgical procedures when people have to be conscious, awake, because you need to know whether you’re interfering with functionally essential bits of the brain.

So there’s a number of neurosurgeons, mainly in Canada, who are very painstakingly either stimulating different bits of the surface of the brain, or sometimes recording as well and they had real difficulty eliciting pain at all by stimulating different bits of the surface.

[During the] 50s and 60s there was a great interest in psychosurgery, so chopping out different bits of the brain. So there was a great vogue for people with very serious depression and other psychiatric problems, cutting out, chopping out bits of the frontal cortex (so the front of the brain). That obviously had a fairly major effect on people’s personality and motivation. So they started chopping out or chopping the connections to a bit of the frontal cortex, which is the more emotional bit of the frontal cortex called the cingulate cortex. When they did that patients still felt pain, so they were able to register pain, but it no longer bothered them.

Evans: So you’re taking the emotion away from the pain?

Jones: Exactly. And that was the sort of first indication that perhaps the sensory, so the ‘Where is it?’ and the ‘When is it?’ aspects of pain might be processed separately to the emotional aspects of pain.

Evans: An example that lots of people use is that if you stamp on my foot, and I’ve just won the lottery, I don’t mind the pain, the pain is okay. But if you stamp on my foot and something really bad has happened to me, I really feel the pain.

Jones: Absolutely. The one thing that we’ve learned from three decades of functional brain imaging is that the experience of pain is a highly variable, highly plastic process that is very context-dependent. So we’re really talking about the psychological context, which is what you were just mentioning.

A beautiful example of that is the placebo effect, which is really the ability to experience something completely differently. Not because of anything physical, just because of a verbal or visual cue about what you might be about to experience. This is why we can be hopeful about pain because it’s all processed in the brain. The brain is a very powerful organ and we can actually change the way it’s processed, so there is this plasticity.

When you experience pain, there’s lots of different components to that. There’s the actual stimulus that might be painful, so sticking a needle in the skin or moving a painful joint. But there’s also all the things around that. So there’s the expectation or the anticipation for that stimulus or that experience. There’s also what comes afterwards, so how you respond to that. Is it going to stop you moving or is it going to make you move faster?

We’re built to – or designed to – respond in different ways to pain under different circumstances. So if you’re anticipating pain caused by a nasty animal that might kill you, well, you’re going to have a very different response to that [than] to anticipating pain that might come from a painful joint. You can interrogate that in a laboratory and look at how the brain responds both to the anticipation of pain and to the actual pain itself. What we’ve learned from studying that over the last few years, is that the anticipation of pain is almost as important as the actual stimulus that causes the pain, in terms of informing the experience that we actually have.

Evans: But for those who have chronic pain, permanent pain, there’s no anticipation involved, we know that we’re going to hurt tomorrow. So how does the brain react to that?

Jones: You say there’s no anticipation, but there will always be anticipation because you’re always projecting what you might be experiencing into the future. In fact, a large part of our brain is geared to just planning for the future, particularly the front of the brain, the frontal cortex is very involved in memory. So remembering what happened before, projecting what might be happening in the future and integrating those things into a current experience.

The brain has this job of interpreting actual sensory experiences, but also integrating that with previous experience. It’s juggling the actual sensory input, if you like, the here and now, with what’s happened before, and how that might affect the current experience. So the brain, in that sense, is doing a kind of virtual reality job on how we feel.

In some people, their pain may be more driven by what they’re expecting than the actual sensory input. Other people may be much more driven by just the sensory input and less influenced by what they’re expecting. So what we’ve found in patients with different types of chronic pain, including fibromyalgia and osteoarthritis, is that there’s a fine-tuning problem in the brain in the way they do that integration, such that people with chronic pain are tending to anticipate more. So there’s more processing of that, expectations in certain bits of the brain, particularly in a small island of cortex, called the insular cortex. That increased expectation correlates very nicely with the extent of their symptoms, so how extensive and severe the pain is. Whereas the bits of the brain that are concerned with controlling those responses in the frontal cortex are less active and that correlates very nicely with less good coping strategies. By that, I mean, the tendency to think things are going to be terrible ‘Oh, my God, it’s all going to be ghastly’, so what we call catastrophising.

Evans: So the big question is, you talked about plasticity of the brain, that’s the brain’s ability, if you like, tell me if I’m wrong, to rewire itself. How do you rewire the brain or can you rewire the brain?

Jones: Well, that’s a really good question that we don’t really know the answer to. We know the brain can rewire itself in terms of remaking connections. If the brain is damaged, it can remake connections, although we don’t really understand that process very well. That’s very important to patients who have chronic pain as a result of damage to the brain, such as patients who have post-stroke pain, for instance.

But it can also virtually rewire itself by just changing the strength of those connections in the brain. One very famous example of that is if you look at London taxi drivers. The bit of the brain called the hippocampus, which is concerned with learning about spatial things, such as streets and where streets are, is bigger than normal. If they stop driving taxis or stop learning about driving taxis, then that changes and it goes back towards the normal. So the brain is continuously changing in that way, reinforcing connections for some things, reducing the strength of those connections for other things. That’s what we call plasticity.

Evans: So if we know that we are catastrophising, that the worst is going to happen, ‘I’m going to get up this morning, and it’s going to be absolutely grim’. If you could change the way, or if I could change the way I think about things. I wake up in the morning and the sun is going to be shining and why should I catastrophise in the first place, that might rewire a little bit of my brain to make me feel less pain?

Jones: Yes, and there is some quite good evidence that happens both functionally and structurally. A few years ago, we looked at the effects of a kind of cognitive therapy or talking therapy called mindfulness-based cognitive therapy. We found that if patients just got a short course, so an eight-week course, of this kind of therapy, these fine tuning problems that we’ve discovered in the brain could be partially, not completely, but very substantially improved.

Functionally, we know we can change and those changes, correlated with reductions in the unpleasantness of the pain, but we also know that structurally similar things can occur, and that they can also be reversed. So a number of people, including researchers in Oxford, have found changes in the structure of the brain in relation to the grey and the white matter and that, if the pain improves, then some of those structural changes can be reversed. So again, it’s this idea that although chronic pain is difficult to treat, a lot of the processes that seem to be important in perseverating that pain are actually, or potentially reversible.

Evans: That’s Professor Anthony Jones, who is Professor of Neuro-Rheumatology and leader of the Human Pain Research Group at Manchester University. The group are still looking for volunteers. Volunteers, that is, who have chronic pain, and those who don’t have chronic pain, to take part in their study to develop and test a therapy for chronic pain that increases pain resilience. For more information, just check out their website, which is research.bmh.manchester.ac.uk/pain and look for the drop-down link that says ‘Want to volunteer?’ Now if that’s all too much to remember, just contact Pain Concern and we will put you in touch.

I just need to remind you that whilst we in Pain Concern believe information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf. You can download all editions of Airing Pain from Pain Concern’s website, which is painconcern.org.uk, where you will also find a wealth of material and information about living with and managing chronic pain, including our newly developed Navigator Tool to make consultations between you and your doctor much more effective.

Now, creating greater understanding of pain is at the heart of what we do at Pain Concern and bridging a communication gap, perceived or otherwise, between patients and healthcare professionals, is something that more and more doctors and researchers are trying to do. No more ivory towers where, in days of yore (well, hopefully anyway), patient involvement wasn’t seen as part of the medical solution. And, in that spirit, Professor Anthony Jones uses the power of public performance for chronic pain sufferers and the people who support them, medical professionals and absolutely anybody who wants to know more about what makes the brain tick. In his show Pain, the Brain and a Little Bit of Magic, he collaborates with Naive Theatre Company, using poetry, music and a bit of stand-up and an oversized interactive model of the brain, to bring what’s described as an optimistic message of how chronic pain may be better understood and treated.

Jones: We thought of it originally as just a way of bridging the knowledge gap. But now we’re thinking about it a little bit differently, and perhaps a way to really bring together the pain community and all the people that are involved in that. So what’s made us think about that a little bit more is that we’re now developing some new brain-based therapies to treat chronic pain more effectively. So we’re doing that in quite close collaboration with our patients. We’re now thinking actually that Pain, the Brain and a Little Bit of Magic could not just be a vehicle for explaining about that, but actually as a kind of catalyst for bringing these groups together in a sort of collaborative way.

Evans: What sort of therapies are you developing from this then?

Jones: Mainly based on the work we’ve done over the last three decades. We’ve done a lot work on experimental placebo, and discovered doing that process that when we’re expecting to have a positive response from a placebo intervention, the brain expresses more alpha waves, particularly in the frontal and insular cortex. We didn’t really know what that meant, then one of our PhD students, Kathy Ecsy, did a whole PhD on whether this was important or not. And she did that by applying an alpha rhythm to either a visual or auditory stimulus. To cut a long story short, we found that if you do that, you get a painkilling effect on normal volunteers.

Evans: Let me see if I can get this right. There are alpha waves involved in a particular stage of sleep and they are the restorative, the healing waves, if you like. Sometimes, (you must tell me if I’m wrong here), sometimes those alpha waves are missing in sleep?

Jones: We don’t really know exactly what the role of all these different waves, including alpha waves, are in sleep. But certainly alpha waves are associated with sort of early stages of relaxation and, as you say, restorative sleep. We know that patients with chronic pain particularly complain about poor sleep [but] we don’t really know what the relationship is between the sleep and the chronic pain. Some of my colleagues think that it’s the poor sleep that generates the chronic pain. The nub of it is, we don’t really know.

There is also quite a lot of evidence from other sources that alpha waves may be important in controlling aspects of sensory experience. What we now think is that alpha is probably quite important in the kind of top-down control of how we feel. So we’re developing a platform. It’s a technical platform and the idea is that patients will be able to use this in their own home. The actual platform will be downloaded on either a laptop or their smartphone. They will also have an individualised EEG cap, which they’ll be able to just plonk on their head. Because there’ll be wireless communication between their smartphone and their brain, they’ll be able to see how much alpha they’re expressing in their brain. If they look on their pain diary, and they notice their pain is pretty bad, has really been getting worse and worse in recent times, then they might decide to engage with a number of options, which will be available on this pain platform.

At the moment, the two main options are one probably more for acute, so recurrent acute pain that a lot of these patients experience. They’ll be able to plug into an alpha entrainment programme that will just allow them to experience alpha either visually or with an auditory input. They will choose how long they want to engage with that, probably twenty minutes at a time. So if they’re getting particularly bad pain that’s interrupting their reading or watching television or whatever, they’ve got something that they can engage with for a short period of time. So we’re just testing out whether that actually works for chronic pain patients at the moment.

The other aspect is to try and train the brain in a more long-term fashion to express more alpha. With that, they’ll be able to look at what’s going on in their brain on their smartphone again, and then train themselves to actually express more alpha waves themselves over a period of weeks or months. We’ve got ideas about kind of doing more sophisticated things beyond that. So it’s a kind of generic platform that allows us to allow patients to interact with their brains in a positive way.

Contributors:

Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University
Professor Anthony Jones, Professor of Neuro-Rheumatology at Manchester University, Human Pain Research Group Lead, creator of Pain, the Brain, and a Little Bit of Magic.

More information:

University of Manchester neurofeedback study volunteering: bmh.manchester.ac.uk/pain/ and click the ‘Want to Volunteer?’ tab at the top of the page
Pain, the Brain, and a Little Bit of Magic: manchester.ac.uk/discover/news/pain-the-brain-and-a-little-bit-of-magic-as-research-goes-from-lab-to-stage/.

How pain’s subjectivity makes it difficult to measure, rewiring the brain, and new research that allows patients to visualise their pain

This edition is funded by the Plum Foundation.

In this edition of Airing Pain, returning contributor Mark Johnson, Director of the Centre for Pain Research at Leeds Beckett University, speaks to Paul about the experimental methods used in their lab to measure how pain is experienced. Professor Johnson emphasises the difficulty in communicating one’s pain, as it is entirely context driven and based on the experiences of the patient.

Paul then heads to Manchester University to speak to Professor of Neuro-Rheumatology Anthony Jones. Paul learns about the different techniques used to measure the alpha waves produced by the brain when pain occurs, how the anticipation of pain is as important as pain itself, and the difficulties that scientists encounter when trying to emulate these signals. We also hear about the brain’s ‘plasticity’; its ability to rewire connection based on sensory experience.

Anthony’s research team are developing a ‘smart neuro-therapies’ platform (which you can get involved in, see ‘More Information’ below), a way for patients to measure their brain’s alpha waves, which are important in controlling sensory experiences. The research could have significant implications in pain management. The team are employing a unique collaborative theatre piece, ‘Pain, the Brain and a Little Bit of Magic’ to help patients, healthcare professionals, and the public to understand these complex systems.

Contributors:

Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University
Professor Anthony Jones, Professor of Neuro-rheumatology at Manchester University, Human Pain Research Group Lead, creator of ‘Pain, the Brain, and a Little Bit of Magic’.

More information:

University of Manchester neurofeedback study volunteering: research.bmh.manchester.ac.uk/pain/ and click the ‘Want to Volunteer?’ tab at the top of the page
‘Pain, the Brain, and a Little Bit of Magic’: manchester.ac.uk/discover/news/pain-the-brain-and-a-little-bit-of-magic-as-research-goes-from-lab-to-stage/.

As mentioned in the Latest News post of 17th October 2018 – and also featured in the forthcoming issue, issue 71, of Pain Matters – as of 1st April 2019, prescription drugs Pregabalin and Gabapentin are to be reclassified as Class C controlled substances. NHS England has just published updated guidelines for patients and healthcare professionals, to be distributed in March 2019.

Click here for the healthcare professionals’ guidance.

Click here for the patients’ handout.

Anxiety and expectations, how ‘fear circuitry’affects self-management, and the importance of social prescribing

To listen to this programme, please click here.

Prefer a PDF?Download

This edition has been funded by friends of Pain Concern.

Director of CSPC Physiotherapy in Leeds, Alison Rose, specialises in working with high-level athletes, particularly those with complex injury histories. Rose speaks to Paul about her experience with chronic pain as being subjective for both athletes and non-athletes, explaining it as a unique ‘puzzle’ that needs to be put together to find the core mechanisms that cause pain. We also hear about the many unexpected physical relationships within our bodies that cause pain, as well as the importance of social networks.

We then hear from Cardiff University Professor of Medical Education Ann Taylor. Professor Taylor speaks about her work exploring how those with chronic pain perceive non-pain related information, and how this information is processed through ‘fear circuitry’ which can have detrimental effects on self-management. Professor Taylor promotes more focus on the ‘social’ aspect of the biopsychosocial model and the benefit of constructive conversations between patients and their healthcare professionals, something which Pain Concern’s Navigator Tool aims to do. We hear again from Professor Mark Johnson of Leeds Beckett University, contributor to Airing Pain 110, about the importance of delivering healthcare with a social emphasis.

Issues covered in this programme include: Anxiety, complementary therapies, confidence, culture, depression, educating healthcare professionals, emotional support, fibromyalgia, flare-up, GP, hypersensitivity, mental health, Navigator Tool, physiotherapy, policy, psychology, social care, sports injury, support groups and time banking.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for health care professionals. I’m Paul Evans, and this edition has been supported by Friends of Pain Concern.

Alison Rose: Anxiety of athletes coming up to an event they will quite often have something that comes out of the blue and you either see it every single time there’s a big race coming up, that they will present in the physio room with an injury, which, when you look at it, there isn’t really anything there.

Ann Taylor: If Mr. Jones, with chronic pain, is sitting in front of the television watching the Olympics, what’s happening in their brain when they’re processing information about people running around?

Evans: From couch potato to Olympic athletes, we all have brains and we all have bodies, but they don’t always talk nicely to each other.

Alison Rose is a physiotherapist who works at CSPC Therapy Clinic in Leeds, whose patient list covers the whole gamut of ability from elite athletes, including gold medal Olympians Kelly Holmes, Jessica Ennis and the Brownlee brothers, through to the weekend warriors and yes, couch potatoes.

Rose: For me, no one should live with pain and I think it comes out of the fact that we’ve got one body for life and I think these problems are intriguing because they usually have got a really complex nature to them. Obviously the effect on the person is really great and for me, physio is about fitting together a puzzle. I think quite often pain manifests in a certain way but it actually potentially might be the accumulation of any of the little injuries we’ve had since the day we were born, right up until the point where the body just says ‘actually, no, I can’t do this anymore’. For me, it’s finding the keys to unlock that and to help the person have a more functional life.

Evans: So how do you unravel all those little things…well, they may be little things…that are going on?

Rose: Getting a really good subjective history is super important, so finding out what the pain means for the person, what effect it is having on their life. Sometimes it’s that thing between ‘oh I’ve got a bad back’, but actually it means ‘I can’t play with my children’. So there’s a really important reason to get rid of the reason why they have back pain, so they can play with their children.

Like I said, it’s taking a really good subjective history, so going right back to the point where ‘have you had falls off a bike and head injuries and even having teeth pulled out’ can make a difference to how muscles sit around your neck.

I do a full body assessment and just tie in symptoms with function and how the person moves. Sometimes, you can get a problem in a certain area but it can be because there’s a very large dysfunction somewhere else. For example, you might have back pain because your hip and your foot on one side doesn’t work very well, therefore it affects the way you move, therefore you get back pain because that’s the area that takes the strain.

Anxiety of athletes coming up to an event, they will quite often have something that comes out of the blue and you either see it every single time there’s a big race coming up that they will present in the physio room with an injury which, when you look at it, there isn’t really anything there. Then, when you get to know the athlete, you realize that this is the pattern that they have, that they will present for physio just before a big event.

I think sometimes it’s the anxiety around an event that just they are just more sensitive to things and will report things and I think sometimes, it’s just that they want to come in and speak to somebody that they trust and just get little bit of, I guess, confidence from that.

Evans: But that doesn’t mean that the problem doesn’t exist?

Rose: It obviously exists for that person. You wouldn’t belittle the fact that they feel that, because who’s to say that one person feels something and somebody else doesn’t? Obviously I’m not feeling that person’s pain, so it might be something that I can see and sometimes it just takes time for the person to realize that actually, this is what they do every single time there’s a big race coming up, that they will present as something.

Evans: So you have to address the psychological side of things as well?

Rose: Yeah, it really does come into it because pain is something that is… it can prevent you from doing things that you want to do. It can affect how you see yourself and it can affect your perception, it can affect your social life, it can affect how you interact with other people and all of those things will tie in with how this pain affects you.

Evans: That’s working with elite athletes, but what about other people with chronic pain conditions who come and see you?

Rose: Obviously those with chronic pain, their end-stage rehab won’t be as high a level but I would look at them in exactly the same way. I would examine them in exactly the same way, the same thing with their subjective history. It is finding out what that pain means for them, but if their aim to perform is to be able to get up and down the stairs and be able to take the children to school or go about their business, for me, it’s totally the same and I wouldn’t change the way I treat those people.

I might be more gentle on those with chronic pain than I would be on an athlete in my treatment, but still I would be looking to get to the bottom of that or get to the point where actually, ‘you’re moving really well now, I know you’re still a little bit sore but actually it’s fine and you will not hurt yourself moving forward’, so, just kind of get on and go about your business. It is really the same puzzle that I’m putting together.

Evans: What sort of conditions do you see?

Rose: I guess one of the best examples I’ve got was a lady who’d had headaches for 40 years and she was on a lot of strong medication. Actually the reason that she had that pain was because the bottom of her back wasn’t moving very well and she’d fallen on her coccyx. There’s a connection, obviously, through your spine from the bottom of your spine right up to your head and your neck, so in getting the lower back to move better, that allowed us to settle down everything all the way up. So we managed to get rid of the headaches that she’d had for 40 years on a daily basis and managed to get her down from the carrier bag full of painkillers that she was having to take – she might take one every so often, but it’s [once] in a blue moon now.

Probably the most difficult areas to treat are pelvic pain, headaches, head pains, neck pains, neural type of symptoms and then quite often we will see people, if they’ve had surgery for example, [they] may end up…because obviously the scar tissue tightens and there are changes that happen because of a surgery which has been necessary.

Quite often just releasing the soft tissue around there enables the person to move better, which takes the stress off the area. There usually is a weak area that is under strain because of something which, if you can change that, it just allows everything to settle and life becomes more manageable.

Evans: Do you deal with people with fibromyalgia?

Rose: Yes. So again, I think quite often those have… your nervous system can get highly sensitized and I think you can really tie in with that. But quite often, those types of people have got a highly sensitised nervous system because they might have had either head injuries or teeth pulled out, or they’ve had big traumas, car crashes and if you think about the things that we layer on through life from when you’re small, to the falls out of trees and the falls off a bike, right the way through to car crashes or slips down the stairs. All of these things, they all sit in your system and I think your brain isn’t really good at differentiating between problems, then sometimes it is just unpicking those.

Evans: So what you’re saying is that somebody’s body, my body, is the product of, say, 62 years’ worth of trauma, however light that might be?

Rose: You know, our bodies are amazing at adapting. They will adapt and will adapt because we have to get around in life.

Obviously years ago, you had to be able to move to survive and we will find a way to move in a pain-free way. Sometimes, even falling over will jangle your nervous system around and just upset it and if you do one or two of those too many, things do add up. I think bodies are incredible things and they will adapt and adapt and adapt and I think there does come a day where, whether it’s an emotional stressor that comes in or another physical stressor or you become ill and your systems get overloaded, but actually your body just goes “whoa this is enough” I need to actually find someone that can help me sort this out. I think that is where we would come in. Sometimes, it’s just unpicking the layers and layers that people have added on through their lives.

Evans: We are the house that Jack built, the extension on the extension on the extension on the extension…

Rose: Exactly. I tell people that they’re like onions and sometimes you are undoing all of those layers and just helping them to move and function better. Everything, whether it’s just tissue that you’re rolling through, you are stressing those if you’re not moving very well and your body will cope to a certain point, but then will start to complain.

Evans: Now what I hadn’t considered as suitable for manipulation were the bones in the head. Alison Rose again…

Rose: I think there’s a myth that the bones in your skull will get fused as you grow up and that your head is like a solid bowling ball. Actually it’s not fused, it’s a system of flat bones that fit together a bit like double-sided tongue-and-groove and they can, with various knocks, end up being slightly twisted.

If you had a solid bowling ball as a head, if you did fall over and hit your head, it potentially could crack, so this system is in place so that you get mobility there, but it is possible to treat those bones. If you think about your head not sitting quite straight on the top of your neck, your body will have to adjust so that your eyes are actually straight in the space because your body wants to have your eyes straight so you can see properly, but other things underneath that might have to adapt.

But I’ve had people in who presented with double-sided shoulder pain six months after they’ve had various teeth pulled and braces and blocks put in, and actually that’s been because everything around the head has been pulled out, so it’s put a lot of stress on the nerves coming down into the shoulders. But having treated those areas, it’s got rid of the shoulder pain that they’ve had. Sometimes, the bits that have been missed are actually [to do with] the fact that your viscera is the thing that isn’t moving and we see that so often.

Again, I think with chronic pain sometimes obviously if you’re taking lots of pain medication it will obviously overload your liver and it can therefore then make your liver not move very well, which can then make your rib cage not move very well, but the neural interconnections again will hyper-sensitize your system, that’s where a lot of the chronic things come in. If you’ve had a car crash or fall on your bum or, I don’t know, you’ve had a caesarean or surgeries or sometimes it is the other effects, your organs should move on the inside. They have something called motility which is how they move when they function, but also they do need to move inside you. For example, your liver needs to be able to rotate within your ribcage and it needs to be able to flex forward and bend backwards to give you those movements that obviously can be on the outside.

We do see a lot of people who potentially might have had, again it’s usually related to a trauma, but sometimes if they’ve had a lot of medication because they’ve been ill, that things do get overloaded, or they stop moving very well. So, if you can picture a tin of beans which you shake up, obviously the tin of beans on the outside will still look the same, but the inside will be shaken up. So if your organs aren’t moving very well on the inside, that will have an effect on the outside and how your body will be able to move, which can then have a knock-on effect on chronic pain.

Evans: I don’t understand. I mean I would have thought my internal organs are in the place where they should be and that is that? So how do they move?

Rose: OK so, organs can become less mobile within your system in a variety of different ways. If, for example, you fall over onto your bottom or you’re in car crash, your body will move but within you, your organs will move back and forth within your skeleton.

The other thing is that because obviously your organs are innervated by nerves, if your whole nervous system, in particular your upper back (which is related to your sympathetic nervous system and your fight-or-flight) that can have an effect on the blood supply to your organs, in the same way it would if you go into fight or flight because you’re feeling anxious or you’re being chased by somebody.

So if that’s happening in the long term, it can be a mixture of potentially traumas, it can be medication overloading organs which again just stops it functioning very well, or like I said if your whole nervous system is really driven and it’s really on overdrive, it can in itself have an effect on causing these organs to just not move as well and go into what we would call visceral spasm.

Evans: So as a physiotherapist, what you do to work on that?

Rose: You learn how to assess how an organ feels. There are different ways of being able to mobilize and they’re really, really gentle techniques but they do help the organs to move better within your system, which will then allow you to move better as an entity or it will allow the organs to function better, which again can have a big effect, it just helps to get rid of toxins.

Again I’ve had patients in who just feel that they’re toxic and when you start getting their whole system moving and obviously your liver not moving very well, for example, will have an effect on your diaphragm, which will have an effect on your breathing, which then will have an effect on your thorax and anxiety. So everything again, to me, it’s all tied in, you can treat one area of the body and it will have a marked effect on another.

Evans: For somebody with the long term pain condition, what advice would you give about seeking out a physiotherapist or any other practitioner?

Rose: I think in any profession, there are people that are good at what they do. I think it’s really important to not just go to one person and think ‘well, actually, physio didn’t work for me’. Maybe that wasn’t the right physio for you. You should be starting to see a difference within the first two or three sessions and starting to feel that things are changing. I think it’s really important to have a physio that will actually check everything and actually not just look at the bit that’s sore, because like I said, quite often, the bit that’s sore, where the pain is coming from may be because of a dysfunction somewhere else and it’s secondary to the other dysfunction. So I think it is really important that somebody is looking at you really, really holistically.

Sometimes it does take two or three times to find the right person. One of the things I treat is chronic groin and pelvis pain and people will travel from all over the UK because actually, I think we do look at that in really holistic way. We do get people better from that but these again are people who’ve seen many other physios and maybe it just hasn’t been the right approach for them.

Evans: So, for somebody who’s been in consultations with Dr Google, Dr Yahoo, or whoever, is there something they should look out for as a stamp of approval, if you like, for a physiotherapist?

Rose: You need somebody who is really experienced and has a really wide skill base and also somebody who recognizes that ‘actually, this is where my limits are and actually, I do need task for help from potentially a doctor, the pain clinic [or] another practitioner’. We obviously don’t have all the answers all the time but actually having a really good network of people around you, that if you do need to refer on because there are certain things that we can’t do or we realize that actually this isn’t within my skill set. I think it is really important to have that network as well.

Evans: Physiotherapist Alison Rose.

I just need to remind you that whilst we in Pain Concern believe information and opinions on Airing Pain are accurate and sound based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now, Alison Rose talked about the anxiety athletes might feel coming up to an important event and how they might present with an injury which, on examination, is just not there. Of course, pain linked with anxiety or other emotions is not unique to elite athletes.

Ann Taylor is Professor in Medical Education at Cardiff University’s School of Medicine. In her doctoral research, she looked at the way people with chronic pain perceived non-pain related information.

Ann Taylor: So we put them in the scanner, showed them a series of pain words and also showed them pictures of activities of daily living and compared with healthy controls that were matched, it showed that they actually use their fear circuitry to process that information. So despite using a self-assessed questionnaire, [where] they said they were not fearful of movement, in fact when it came to looking at how their brain functioned, when they saw these words or saw these pictures, they were actually fear conditioned. So they subconsciously possibly felt, processed, those pain words and those activities of daily living very much using fear circuitry.

So these people were very complex people living with chronic pain, they were on high opioid use, they had lots of mood and physical functioning problems [and] they scored very highly on their pain despite large doses of opioid.

I was very interested in, if Mr. Jones with chronic pain is sitting in front of the television watching the Olympics, what is happening subconsciously? Or what’s happening in their brain when they’re processing information about people running around? So it kind of suggests that any movement or any pain words that you show people with chronic pain, they will process that through fear circuitry. So it’s potential stressor and it’s something that subconsciously, probably or subliminally, they’re scared of, so it has ramifications for things like self-management. How do you disentangle people’s fear conditioning with getting the right messages out there?

Evans: So go on and how do you…?

Taylor: It’s about having constructive conversations with people living with chronic pain. So rather than relying on self-assessed questionnaires, which they might be wanting to respond to, to please you, it’s actually having conversations about what worries you about your pain, what you find is difficult to manage with your pain, how do you view me telling you need to go and see a physiotherapist or you need to go up to the gym and trying to get them to unpick that because I’m sure if they think about it enough, they will actually start thinking about triggers that trigger this response to pain words or activities.

Evans: The first person within the health profession you will see about your pain is the GP. They don’t have time to do that sort of thing, do they?

Taylor: Traditionally no, but a lot of these people that they see with chronic pain, they’ve had their chronic pain a long time before they go and see the GP. I think it’s about, if you first came to see me as a GP (which I’m not, I’m an academic educationalist) but it’s about saying “look, you’ve had your pain for a long time. We’re not going to solve this overnight, so we’re going to have regular 10 minute slots so [that] we can start and unpicking your pain and unpicking how you feel about your pain and then looking at the positives, looking at what you want to achieve and looking at how we can take steps to achieve that. It’s about thinking rationally about how you can use those 10 minute slots in an innovative way.

Evans: Well, as if on cue, the results of four years’ research and development of Pain Concern’s Navigator Tool, is an innovative way to facilitate better conversations between doctors and patients and therefore better outcomes and still within that 10 minute timeframe. Full details, download links and supporting videos are on Pain Concern’s website which is painconcern.org.uk

Ann Taylor again.

Taylor: We talk about the biopsychosocial approach to pain, but we just ignore the social bit. I’ve been doing a lot of engagement activities across Wales to see what people with chronic pain, living with chronic pain want from pain services and a lot of it is about social support. I think we should do a lot more in social prescribing and not just rely on ‘there is the GP and then there is the pain services’.

There’s the whole movement around men’s sheds now which is coming forward. Things like support groups, they wanted sessions in the GPs, so somebody could tell them why they have pain, what it means, how they could help or support to look after the wife who’s got dementia, so they can actually go and do something.

The people that were responding to our workshops were very much about ‘it’s the social support we want’, and they’re doing some work in Llanelli and Ely around time banking. There’s a not-for-profit organization called Spice and they will come in and they will set up time banking. So if I was to come and help you with your allotment, you would do the raised beds because you’ve got back pain and then I would share the allotment produce or I would go and help Mrs. Jones with some activities of daily living because she’s got fibromyalgia and as a result, I would get credit so I could go and use a local gym, so we’re back to medieval time and bartering, but it’s been shown to work very well.

Evans: I think that’s fantastic. You know from my history I have fibromyalgia and I can remember my neighbours clubbing together to chop my tree down and this and that and the other, but I felt incredible guilt that they were doing this. But if I could have offered them something back that would’ve been fantastic.

Taylor: And I think that’s it, this is about social support, so you’re no longer a victim, you’re a valued member of the community and that’s what Spice and time banking and all this social prescribing is about.

There was one story about a man who had low back pain and was very limited and he got support from a family with his garden and it turned out he was a war historian and he was a teacher. So, he would sit with the kids in school telling them all about the war and so he could give back to the community by teaching in a school voluntarily about the information he gleaned about World War Two.

Evans: I mean, the areas you mention, time banking and social prescribing in both those places, there are high-ish levels of deprivation. Is that why these areas have been picked?

Taylor: Yes. You know you go up to the Welsh valleys and you’ve got five or six generations of people who have never worked, so their great-great-great-great-grandfather worked in the mines and nobody’s worked ever since. They have low resilience, they have low self-esteem and so it’s about getting activities socially to enhance the community and to support the community, so they can support these people to actually gain more self-esteem. Because there’s no point sending these people with massive social problems, low mood, low function [and] very complex abusive relationships into pain clinics or pain management services [because] they’re not social workers.

Maybe there needs to be a step where we support them in the community, we help them with their resources, we help them become more proud of themselves and have more self-esteem, so that they can optimize who they are. So that when they go into pain services, they’re already primed to make the most of pain services, because if you have a horrible life and you have pain, I would blame my pain for my horrible life. I wouldn’t want to say my horrible life is due to me and I need to do something, I would prefer to say my horrible life is due to the fact that I’ve got pain.

Evans: You’re a victim.

Taylor: I’m a victim, so if you take my pain away that means my horrible life is my responsibility and I’m not ready to accept that. So it’s about how can the community enable people to accept that maybe their horrible lives are partly due to them and to give them some skills and some attributes and some confidence to make some difference and then, when you start making some difference, then they might be ready to relinquish their pain.

Evans: That’s Professor Ann Taylor of Cardiff University’s Medical School.

Don’t forget that you can download all editions of Airing Pain from Pain Concern’s website. Once again it’s painconcern.org.uk and there you’ll also find a wealth of material and information about living with and managing chronic pain, including our newly developed Navigator Tool.

Now, we’ll be returning to the subject of social prescribing in a future edition of Airing Pain but to reinforce what Ann Taylor was saying, I just want to leave you with the snippets of conversation I had with the Director of the Centre for Pain Research at Leeds Beckett University, Professor Mark Johnson.

Mark Johnson: In the healthcare professional setting, especially in the medical profession, I don’t think we give anywhere near enough focus to the social components of pain. We tend to focus on the biomedical initially and then the psychological perhaps but, actually it’s the social cueing that goes on that I think is really quite critical as well. I think what the challenge for healthcare in general and healthcare service delivery is how we manage to integrate those sorts of findings into the way we deliver our healthcare.

For example, patients who have cancer, they often seek complementary therapies and they like to experience those complementary therapies in nice settings. They don’t want to be [somewhere] a bit like our laboratory, a white-walled clinical environment, there’s no plants in here, there’s no photographs on the wall…

Evans: …there’s no piped Muzak…

Johnson: …and no piped Muzak, absolutely, absolutely and then the hospice settings have really taken that on board. I mean they’re great settings to be in and around and I do wonder whether those sorts of settings would be more amenable again in some of our hospital departments. I am aware they want to do what GP practices have started to introduce little things like gymnasiums and in their settings, just little things patients can do while they’re waiting to see the GP.

I think that is absolutely the way forward because you can quite quickly assume a sick role by just entering into some of the hospital settings. I was in a waiting room not so long back in a hospital and I thought ‘Gosh, I feel unwell just waiting’, and I wasn’t a patient, I was a visitor. So I think there’s a lot to be done on that side of things.

Evans: I was in St. Gemma’s Hospice yesterday and there’s an atmosphere of it being like a spa.

Johnson: Yeah, yeah, yeah … I’m a great believer in those sorts of environments for our chronic pain patients in particular. I think we unfortunately probably over medicalize some of our chronic pain conditions [but] not all of them. If you’ve got a disease driving the condition, an ongoing disease that does need attention, but we are well aware now that some of the chronic pain syndromes, they certainly do not have pathology in the peripheral tissue that originally started the pain. It’s the pathology, if we want to call it that, which has migrated to the central nervous system. If we continue searching for the pathology, we aren’t going to find it, so there needs to be complete sort of shift in the way the patients like that are managed. I think that’s going to be the paradigm shift in care going forward.

Contributors:

Alison Rose MCSP HCPC, Director of CSPC Physiotherapy, Leeds
Professor Ann Taylor, Programme Director for the MSc in Pain Management at Cardiff University
Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University.

More information:

NHS England site on Social Prescribing: england.nhs.uk/personalisedcare/social-prescribing/
Men’s Sheds: menssheds.org.uk/
Pain Concern’s Navigator Tool: painconcern.org.uk/the-navigator-tool/.

Anxiety and expectations, how ‘fear circuitry’ affects self-management, and the importance of social prescribing

This edition is supported by friends of Pain Concern.

Director of CSPC Physiotherapy in Leeds, Alison Rose, specialises in working with high-level athletes, particularly those with complex injury histories. Rose speaks to Paul about her experience with chronic pain as being subjective for both athletes and non-athletes, explaining it as a unique ‘puzzle’ that needs to be put together to find the core mechanisms that cause pain. We also hear about the many unexpected physical relationships within our bodies that cause pain, as well as the importance of social networks.

We then hear from Cardiff University Professor of Medical Education Ann Taylor. Professor Taylor speaks about her work exploring how those with chronic pain perceive non-pain related information, and how this information is processed through ‘fear circuitry’ which can have detrimental effects on self-management. Professor Taylor promotes more focus on the ‘social’ aspect of the biopsychosocial model and the benefit of constructive conversations between patients and their healthcare professionals, something which Pain Concern’s Navigator Tool aims to do.

We hear again from Professor Mark Johnson of Leeds Beckett University, contributor to Airing Pain 110, about the importance of delivering healthcare with a social emphasis.

Contributors:

Alison Rose MCSP HCPC, Director of CSPC Physiotherapy, Leeds
Professor Ann Taylor, Programme Director for the MSc in Pain Management at Cardiff University
Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University.

More information:

NHS England site on Social Prescribing: england.nhs.uk/personalisedcare/social-prescribing/
Men’s Sheds: menssheds.org.uk/
Pain Concern’s Navigator Tool: painconcern.org.uk/the-navigator-tool/.

A recent article on the academic and current affairs website, The Conversation, by Professor Blair Smith from the University of Dundee, regarding his team’s study on the global increase in opioid use, has sparked debate over the overprescription of opioids in the UK. Professor Smith has found that while short-term opioid use for pain management can be effective, ‘there is clear evidence that they cause widespread and potentially serious harms, when taken long term.’ Another important factor identified by Professor Smith and his team is the social aspect of opioid prescriptions, with ‘four times more prescriptions for strong opioids’ given out in the most deprived, compared to the most affluent, areas of the country.

Professor Smith concludes, ‘Clear guidelines for doctors and screening processes could help reduce the harm caused by opioids. But we must also address the causes of long-term pain, which drives their use. Most importantly, these include deprivation, and the ageing demography of our society. Without investment to address these, the opioid epidemic is set to spread globally.’

https://theconversation.com/opioid-epidemic-the-global-spread-explained-101649

An opinion piece in The Guardian, titled ‘Opioids don’t work for most people with chronic pain. So why do we still prescribe them?’, by NHS psychiatrist Mariam Alexander, questions the use of opioids as a means of managing chronic pain. The article, which puts more emphasis on the patients for whom opioids are ineffective, rather than the one-in-ten patients who do benefit from their use, comments on the fact that most GP appointments last only ten minutes. This is cited as a factor in the prescription of opioids as a first response, an issue to which Paul Evans refers in his article about The Navigator Tool in the next issue of Pain Matters, due to be published in March 2019.

https://www.theguardian.com/commentisfree/2019/jan/21/opiods-chronic-pain-prescribe

Regarding the overprescribing of opioids, The National Institute for Health Research (NIHR) has awarded £2.4 million to researchers at Keele University to investigate overprescribing of opioid painkillers in primary care so as to improve the treatment of people with persistent pain – without the use of long-term opioids. The research programme, funded by NIHR Programme Grants for Applied Research, will involve developing an intervention for clinical pharmacists to help people with persistent pain reduce or stop taking opioids (where appropriate), and support them to self-manage their pain. The research will test this intervention in approximately 1000 patients to establish whether it leads to less opioid use, without making patients’ pain worse, and whether this results in better use of NHS resources compared to usual GP care.

https://www.nihr.ac.uk/news/nihr-awards-24-million-to-research-to-reduce-overprescribing-of-opioids/10051

Living with a diagnosis, what palliative care entails, and non-pharmacological treatments

To listen to the programme, please click here.

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This edition is funded by the Agnes Hunter Trust.

According to Cancer Research UK, 50% of all people in England and Wales diagnosed with cancer survive their disease for ten years or more. This edition of Airing Pain looks at what pain management entails for the other 50%; those that live with terminal cancer.

Kate Grafton, Lecturer and Professional Lead for Physiotherapy at Leeds Beckett University, speaks to Paul about her breast cancer diagnosis, her experiences with different treatments, the psychology of mindfulness, and finding the right support group.

Paul then heads to St Gemma’s teaching hospice at the University of Leeds to speak to Professor of Palliative Medicine Mike Bennett who explains what palliative care entails as well as the importance of balancing treatment and quality of life.

Back at Leeds Beckett we hear from the Director of the Centre for Pain Research Mark Johnson, who has a particular interest in non-pharmacological treatments like TENS machines, acupuncture, and laser therapy. Professor Johnson talks Paul about the mechanisms of these treatments and their various limitations and strengths.

Issues covered in this programme include: Analgesia, cancer, carers, chemotherapy, drugs, educating healthcare professionals, electrophysical agents, bereavement, hospice, medication, metastases, mindfulness, opioid side effects, opioid treatment, palliative care, radiotherapy, support group, TENS: transcutaneous electrical nerve stimulation, terminal cancer and worry.

Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK Charity providing information and support for those of us living with pain and for healthcare professionals. I’m Paul Evans and this edition of Airing Pain has been supported by the Agnus Hunter Trust.

Mike Bennet: A carer or family member who is really supportive and understands what they are doing can really help that person, conversely, a carer or family member who has very negative views about analgesia or, you know, shouldn’t be taking drugs, you should manage or you should be more stoic and carry on without drugs, that can sometimes have a destructive effect or can inhibit the patient from achieving better pain control.

Evans: In a previous edition of Airing Pain, that’s 101 (to listen to this programme click here) which like all editions is available for download from Pain Concern’s website, we looked at issues around preventing and managing chronic pain in cancer survivors and, according to cancer research UK in England and Wales, that’s 50% who will survive for ten or more years. Of course, that is a broad – brush statistic based on averages. There are many forms of cancer, each with its own set of figures. In this edition of Airing Pain, I want to focus on the other 50%, those who have terminal cancer. Kate Grafton is a physiotherapist, she teaches at Leeds Beckett University and she has secondary breast cancer.

Kate Grafton: I don’t like the word terminal, I don’t see myself as terminal, but basically, it’s cancer that is not going to go away, and I have been living with that for the past seven years. It’s breast cancer, I have metastases in my bones, my liver, my lungs and my brain. So, the full house as we call it in cancer land. And I’ve had a lot of treatment, I’ve had just about every treatment that you could possibly have for cancer, and I do like patient experience talks, and talk about what the experience is like of living with an incurable disease, but actually being quite well, and how people perceive a cancer patient to be because I’ve got my hair, I look quite well, but I’m on my 104^th cycle of chemotherapy, which is amazing, but equally terrifying, you know, in terms of how you manage that, and how you manage the side effects. So, we talk a lot about their perceptions of what a cancer patient is and what a palliative cancer patient is, because I am essentially a palliative, and there is no getting away from that and then seeing me and not knowing that I am in that classification really. I access the hospice, I am under the palliative care team and there is a lot of people out there like me, just like me, and we’re going around doing normal stuff, and everyday stuff. And they need to be able to kind of put that into their clinical context around someone who wants to exercise, and wants to be well, and wants to be fit and eat healthily to their perception of someone who is in a hospice, very sick, end of life maybe.

Evans: We will hear more of Kate’s story later. But that word palliative is one that confuses some people. Mike Bennett is the St Gemma’s Professor of Palliative Medicine at the University of Leeds. St Gemma’s Hospice, where he works, was the first hospice in the UK to be awarded the status of University Teaching Hospice in recognition of its research teaching and putting evidence into practice.

Bennett: Palliative care is generally the care of people with advanced progressive diseases, so in other words it’s about people who are approaching death, with life limiting disease. And it’s really supporting those people and their families around them in managing that process and of course that process can throw up physical problems, like pain, sickness, breathlessness, of course, and a host of other problems. But, also psychological worries, depression, carers often need support, there are other sorts of social issues about planning for bereavement, or planning in advance where that person wants to die, and having quite difficult conversations sometimes. But nevertheless, all those things by talking about and planning ahead, and resolving as many problems, we can hope to enhance the quality of care of people in that process. We can’t extend life but neither do we hasten death, it is all about improving quality of remaining life. For all cancers, pain is probably the number one concern people have when approaching the end of life, particularly with cancer. We know that about half of all people will experience some sort of pain, sometimes up to two-thirds of people will experience some sort of pain and probably about half of those patients it will be of moderate to severe intensity at times. So, it’s a significant problem. We also know, unfortunately, that despite the availability of drugs and access to services, that at least a third of people will be undertreated for their cancer pain. In other words, they are not receiving the sort of optimum medicines, care and approach that would at least control their pain a lot better. Even in a country like the UK there is still undertreatment and we can do better, I think.

Evans: So, people say with, you mentioned prostate cancer, who can live for years and years and years with that, you’re talking about long-term chronic pain.

Bennett: That’s right yeah,

Evans: Or pain that may develop into long-term pain

Bennett: And that itself opens up a different issue which is traditionally an approach to cancer pain has been based on the World Health Organisation’s analgesic ladder, this sort of step-wise approach of increasing strength of analgesia and, back in the 1970s and 80s when that concept was developed, virtually all cancers led to death within a few months and it was appropriate to that sort of point, but increasingly when some people are living for years with bone disease or liver disease, from their secondary spread of their cancers, the idea that long-term strong opioid treatment is correct for that group of people has been questioned now, so opioids are safe and appropriate medicines for relatively short-term periods, for weeks and months, but maybe not so for people who are facing many years of chronic pain; and certainly outside of the cancer context the idea of long-term treatment with strong opioids, I think that the medical profession is moving away from that really. I think because of the long-term effects of opioids on immune system and hormone imbalances, but also the growing research suggests that long-term, over many years, opioid treatment may not be associated with improvements in quality of life, and actually it is probably safer to be without them I think.

There’s always a trade-off between whether a patient would want as much treatment as to relieve the pain completely, and will trade side effects, like drowsiness or put up with lots of burdens of treatment in order to be rid of the pain, whereas at the other extreme some people don’t want anything that’s going to make them any sense of drowsiness or tiredness, or affect their activities of daily living, and they will put up with more pain in order to avoid burdens of treatment or side effects of treatment. Most people of course sit somewhere in the middle, and it varies as well as there are some days people want to sit on the settee and just be a bit more tired, to be relieved of their pain, other days people want to be more active and so will take fewer medicines or lower dose in order to put up with more pain, in order to be more active and get to the shops or see their grandchildren for example.

Evans: It’s that balance of whether the treatment is worse than the condition.

Bennett: Yeah.

Evans: And how you make those decisions is very important.

Bennett: Exactly, and I think some of that is about understanding what’s important for the person, in terms of what are their goals, what are their expectations as well, so setting expectations firstly about control of pain before relief of pain. We all want relief of pain, but actually trying to bring better control of the pain is the first sort of step, and so setting expectations around that initially and actually thinking well what might better control look like, and if that allows a person to move around their house a bit more easily or even just sleep more comfortably at night, breaking down those goals into small steps is a way of ensuring that you might realise those goals more quickly as opposed to saying, well let’s relieve pain completely forever, that’s very unlikely to happen in many situations.

Grafton: I haven’t had that many symptoms from my actual cancer. I wouldn’t have known on diagnosis that I had cancer everywhere, I was diagnosed secondary from the start. So, in terms of symptoms like brain mets: no symptoms at all, the classic headaches and blurred vision and all of that, and I’ve actually had brain mets from the start, so I’ve lived with that for seven years now, but they’re the least of my worries.

Evans: Now, some people say that the cure is worse than the disease. Does that ring a bell?

Grafton: It does, and some of the treatments have been more, what word do I want to use, challenging, let’s go with challenging shall we, than others. Chemotherapy for me has pretty much been oral chemotherapy. People perceive it as an easier chemotherapy, because you’re not having to sit and have intravenous drugs, and you don’t get as much nausea and as much diarrhoea, you get some, but it’s actually a longer term, so they put you on that to try and keep you weller for longer really. The brain radiotherapy was horrific, really horrific and affected me, personality wise for quite a long time afterwards, I became very sweary and quite aggressive, and team meetings were really fun actually [laugh], it was quite fun wasn’t it, Mark [laugh]? And that wasn’t the kind of person who I am, that was very noticeable to other people around me. Physically, not many affects at all, but psychologically and personality wise that was really challenging to go through that. The bone mets were very painful, my spine actually fractured, pathological fracture, and I ended up having spinal fixation, and that’s left me with neuropathy. They’re not awful, they are just irritating, I think I would say, irritating.

Evans: That’s news, you have cancer, or your husband, your wife has cancer, must be up there with about the worst pieces of news you can have. Psychologically, that drags people down as well before they can make a decision about the pain.

Bennett: A diagnosis of cancer is clearly a bad news conversation, and there are cancers that can be cured or put into remission, but that’s something that you won’t know until time passes really, at that moment when you’ve been diagnosed I think the world crashes in at that point I think, so trying to cope with that existential threat, that you might die, is a significant blow, because what we are asking people after that is to feel in charge or in control of their symptoms, and actually that is a probably a situation where it is very difficult to obtain that when you are feeling that my very existence is threatened

Evans: How would you help people regain control of their decisions of their lives?

Bennett: I mean all these things are in parallel, I think, but providing important information, so actually what does this mean, what’s maybe the prognosis, what might treatments offer, what are the likely chances of improvement, so just trying to help people orientate with a bit more information. I think alongside that trying to understand their fears and concerns, talking that through, sometimes those fears are very rational and appropriate, sometimes they’re irrational in the sense that they are very unlikely to happen or it’s an exaggerated fear based on what we think is from a professionals perspective about how the disease is likely to unfold, alongside that helping people maintain their daily activity, helping people to socialise, keep moving if they are struggling to get out of bed, it’s about normalising things as much as possible, I suppose, and helping people function or get back into gear for a period of time.

Evans: And the personal counsellor of the family, the spouse, the sons, the parents, they can be an important part of the team.

Bennett: One of the philosophies of palliative care and healthcare in general I think should be that it’s very difficult to isolate a person outside of their social network, their family support, so we see people as parts of teams and units, and it’s the family unit that we are trying to support. We know from lots of research including in pain itself, that carers or family members, a close spouse or sibling’s attitude towards pain or analgesia can have more influence on pain outcomes than the patient’s own attitudes and knowledge about analgesia, so carers are very influential for good or for bad in the sense that a carer or family member who is really supportive, understands what they are doing can really help that person. Conversely, a carer or family member who has very negative views about analgesia or, you know, shouldn’t be taking drugs, you should manage or you know you should be more stoic and carry on without drugs, that can have sometimes a destructive affect or can inhibit the patient from achieving better pain control, so trying to tackle the family unit if you like is probably a better strategy rather than just focusing on the patient alone sometimes.

Evans: You look like a very settled person.

Grafton: [laugh] Yeah [laugh].

Evans: What techniques do you use to manage it?

Grafton: What do I use? I really like Kubler-Ross, do you know who I mean by Kubler-Ross? She’s a psychologist that talked about the different stages of the grieving process, but not necessarily towards someone passing away, grieving in a bigger context, and she talks about stages around anger, and I swing very much from denial [laugh], I live in denial a lot, to acceptance, and certainly this year I have had to have a lot of surgery and a lot of time off, and I know I have gone through all of those five stages. I do quite a lot of meditation, I do mindfulness, I try and eat as healthily as I can but I don’t really buy into all of the superfood things, I’m not a kale kind of girl, that’s not going to be me. I exercise, and I think as a physio background I think I would naturally probably do that anyway. I get a lot of support from online support groups and from places like Breast Cancer Care, and Breast Cancer Now, they run really good support groups, and I try really hard not to let the cancer become part of my life. It ismy life, it’s me isn’t it, it’s part of me, but I changed my thinking on it a long time ago. Instead of trying to battle it and fight it, and all of those kinds of terminology, they don’t work with me, I would say I am more of a pacifist, so when I visualise my cancer, most people visualise in the chemotherapy going in and kickboxing and beating the cancer up. When I visualise it, my cancer is truffles, and the chemotherapy is like little pigs going round snuffling out the truffles, and I don’t know why that came but that’s what happened when you do the visualisation techniques. I like kind of sitting there when I meditating I think about the chemotherapy going in and getting rid of it in a peaceful way, I don’t like the terminology around fighting and all of that, it doesn’t wash with me because you can’t fight your own genetics, you can’t fight your own immune system and by that nature, when you die you’ve lost a fight you can never have won; and that kind of upsets me when people talk about that because you don’t fight it, there is no fighting, you just have to be at peace with it really. Does that make sense?

Evans: It does make sense, but you are using techniques that may be good for people with any long-term condition.

Grafton: I’m very lucky in the fact that I am a health professional and I know where to access these, and I read, and I educate myself on what can help. I’m quite aware of the lure of a cure is great, but there is a lot of charlatans out there. And there is a lot of vulnerable people out there that don’t know where to go for help, and sit there for a long time, sad state really, and there is so much out there that can help and you have to be open-minded with this because there is no definitive ‘this is what you will do to make you feel better about this’. And not everything has worked, I tried something called the Emotional Freedom Technique where you do tapping and things, not for me, not for me at all, I don’t really like Reiki and massage. The in thing at the moment is infra-red therapy, well sitting in a sauna to me is ‘errr’, sweating in front of a load of people is not for me, but I think you have to find what works for you, and just because there is no evidence for it, doesn’t mean to say it’s not going to help you.

Evans: Kate Grafton, now of course what scientific scrutiny or evidence does give is the confidence for us to know whether a device does what’s claimed on the packet, and most importantly whether it’s safe. Mark Johnson is Professor of Pain and Analgesia at Leeds Beckett University where he’s director of the Centre for Pain Research.

Mark Johnson: I’m particularly interested in non-pharmacological treatments, treatments that we call electro-physical agents so things like transcutaneous electrical nerve stimulation or TENS for short, acupuncture, kinesiology taping, low-level laser therapy, and more recently we’re interested in visual feedback techniques, mirror-box therapy and virtual reality.

Evans: You brought up the TENS machine, a TENS machine is something that many people with chronic pain may have experience of. I use a TENS machine and it does very little for me, I know other people who have wonderful affects from it.

Johnson: I have been researching into the fact there’s influence and response to TENS for most of my career. I originally did my PhD on it. What TENS is, is a battery-operated device that generates electrical currents, that are then passed across the surface of the skin using adhesive electrode pads that you attach onto the surface. The currents are mild and they shouldn’t cause pain, and the purpose of the currents is to activate the nerves in the skin and the underlying tissue. The nerve that you are trying to activate when you are using TENS are the same nerves that you activate when you rub pain away. So, we often say that TENS is used to electrically rub pain away. And the idea is that when you’re stimulating those nerves, you get a sensation of tingling and sort of pleasant pins and needles sensation associated with the currents activating the nerves. And that sensation, hopefully, overrides the pain that you’re experiencing, or perhaps distracts you from it. Or it might actually completely alleviate it so that you no longer feel the pain at all.

Evans: I happened to have brought my own TENS machine with me. It’s about the size of a small transistor radio, very, very few controls on it. I plug little parts in and I get a sensation, which like little pinpricks across my hand or wherever I put it. What I would really love to know is do I have to feel it? Is it no pain, no gain?

Johnson: Certainly not no pain, no gain. So, one of the things we say about TENS is when you pass the currents through the skin, you should not feel a painful sensation from the currents themselves, that’s really important. If you are, you’ve turned the TENS device up too high. And we’ve done experiments in the laboratory with healthy human individuals using experimental pain. We’ve also looked at clinical research that’s been conducted. For example, we did a large systematic review, which summarised all of the findings of clinical trials. And what we did in that systematic review was compared TENS, when the participants of the trials could definitely feel the tingling sensation, versus the results of those trials where patients could not feel the tingling sensation. And what we found was, if you didn’t feel the tingling sensation, then TENS was less likely to alleviate in this instance, post-operative pain. Similar findings have been shown in systematic reviews for chronic musculoskeletal pain as well.

Evans: I’ve got two pads across my shoulders now. And what I’m feeling is just gentle pulses going across – actually, it’s quite relaxing. When I turn it up, it feels more of a, you know, well, I can feel it, put it like that.

Johnson: Yeah. It’s nice to see you’re smiling when you’ve got it on as well. And I think that’s important because, with interventions like TENS, it’s important that the sensations you experience are pleasant. The body likes to have sensations that are comforting to it, especially when you’re experiencing something like chronic pain, or acute pain for that matter. So more comforting the sensation, the more likely it’s going to be of benefit to you. And that’s why we use, for example, warmth therapy, where you might put a hot water bottle onto an aching back, for example, because the body wants to feel safe, it doesn’t want to feel threatened. And when a body’s really experiencing pain on its own, the body feels threatened. So, if you can add additional sensations that make the body feel more comforting, then it’s going to feel less threatened. And of course, the key thing about that is when your body’s feeling less threatened, you’re more likely to move and we know that movement is medicine. Motion is lotion as the physiotherapists often say, and movement is tightly coupled to pain. So, we like using TENS for conditions where patients might feel frightened to move because when they move, it’s painful. Well, if you put TENS on to that body site, you feel the TENS sensation so that when you start to move the pain is in the background, which then reduces that fear of movement and that avoidance of movement.

Evans: So, what’s going on this current now is going from one shoulder to the other. Is this diverting your attention away from the pain? Or is it physically doing something?

Johnson: It is physically doing something, we often say that TENS closes the pain gate, I don’t know if you’ve heard of that term before. The term ‘closing the pain gate’ is really a metaphor to describe stopping information about tissue damage and harmful events that occur in our body, stopping that information from being transmitted from the site of, for example, tissue damage to the brain. So, it’s preventing the onward transmission of those pain-related impulses. They’re not actually transmitting pain though, because pain is a construct of the brain, we often say no brain, no pain. But there are nerve impulses that are being sent along pathways that are taking information from noxious events that might be happening in or on the body, and tissue damage that might have already occurred in the body. So, what TENS does, is it prevents that onward transmitting of noxious information by stimulating the touch nerves, and the touch nerves, when they send their information along a different pathway to the pain related information, when that information gets into the central nervous system, it prevents the onward transmission of the noxious information. So ,less information gets to the brain about noxious events, which hopefully alleviates the person’s pain.

Evans: Now one thing about people with chronic pain or anybody with a long-term illness, sometimes they get desperate to buy everything that’s going, because nobody sells anything less than perfect cure. I brought a couple of electrical things along with me. One of them is, I’m not going to tell you what it is but you tried it for the first time earlier.

Johnson: So, this was a transcranial electrical stimulator. So, it generates electrical currents, they’re slightly different in their properties than the currents that are generated by TENS. And the currents actually passed across the ear lobes. So, you have one electrode on each ear lobe. And when you turn the device on, you don’t actually feel a tingling sensation in the same way as you feel a tingling sensation with TENS. But when I used the device, what did happen was I felt a bit of vertigo. So, the currents are being transmitted through the ear lobes, and then into the tissue around the ears, and potentially into the brain itself. Although I don’t know whether that’s actually reaching the brain, because I don’t have a cathode-ray oscilloscope to detect where these currents are being delivered to. But it produced a vertigo type sensation for me. Now, I’m interested in and I’ve always been interested in these types of devices, I call them TENS-like devices, because they’re passing currents across the intact surface of the skin. But they’re not using the same types of currents as TENS. And they’re not applied in the same way as TENS. And the challenge I think, for patients is trying to determine well, which of these other devices may be beneficial for their particular condition? I’m quite sceptical, I have to be upfront about this, sceptical because there’s not much evidence that’s been produced on the clinical effectiveness of these devices. That’s not to say that they may not help you or your pain. But we don’t have sufficient research to make judgments about whether they’re helping your pain. But I think secondly, I’m sceptical because one of the challenges I think, for patients and for practitioners for that matter, is trying to select which treatment is more likely to have a beneficial effect compared with other available treatments in your toolbox or available over the counter or the internet. And I think that’s quite hard to make judgments on. I would always go for something where there is some evidence to support effect; where the device, perhaps, is relatively inexpensive; where there’s definitely no harmful effects from the device; and where you can administer the device yourself, and it being relatively easy to use. Of course, traditional TENS fits into that category, but some of the other electrical devices on the market less so.

Evans: That’s Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research at Leeds Beckett University. You can download all editions of Airing Pain from Pain Concern’s website, which is painconcern.org.uk. There you’ll also find further information about living with and managing cancer pain. Of course, backing up what Mark said there, we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgments available. You should always consult your health professional on any matter relating to your health and well-being, he or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf. And if we, or Mark, still haven’t convinced you on the importance of getting expert advice, here’s Kate Grafton to finish this edition of Airing Pain.

Grafton: It’s interesting the support groups, there’s three or four of us on there that have come from a health professional background. And a lot of people come to us and say what do you think about this? And it’s not for me to tell them what they should go away and do. But some things you have to say, actually, if you’re getting that advice, is that person qualified? Have they got some knowledge of this? Or are they just trying to rip you off? And I always say, you know, go to a qualified dietitian for food advice. You know, speak to your oncologist, speak to your breast cancer nurse and get some proper advice. I love my oncologist, he’s mad, he’s completely, and he’s on my wavelength totally. But he laughs at me when I say I’m doing this and I’ll go you know, there’s no evidence for that. You know, and I’ll go, yeah, but it makes me feel better. And he’s like, Well, okay, as long as it’s doing no harm, you know, I’m not going to say no. And I will say to him, I’m not asking you for permission. I’m telling you I’m doing it [laugh]. And he looks at me as if to say [noise] [laugh]. But I would hope he would trust me enough to know me well enough now that I’m not going to do something stupid, that’s going to cause me any harm. I’m not going to sit and take, you know, black cohosh or some weird homoeopathy that’s going to interact or do nothing to my chemotherapy because I’m educated and sensible enough but there are a lot of people out there that aren’t educated and aren’t aware of that.

Contributors:

Professor Mike Bennett, St Gemma’s Professor of Palliative Medicine, University of Leeds
Professor Kate Grafton, Principal Lecturer and Professional Lead for Physiotherapy, Leeds Beckett University
Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University.

More information:

Cancer Research UK: cancerresearchuk.org/
Macmillan Cancer Support: macmillan.org.uk/
Shine Cancer Support: shinecancersupport.org/.

Transcription by Owen Elias

Living with a diagnosis, what palliative care entails, and non-pharmacological treatments

This edition is funded by the Agnes Hunter Trust.

According to Cancer Research UK, 50% of all people in England and Wales diagnosed with cancer survive their disease for ten years or more. This edition of Airing Pain looks at what pain management entails for the other 50%; those that live with terminal cancer.

Contributors:

Professor Mike Bennett, St Gemma’s Professor of Palliative Medicine, University of Leeds
Professor Kate Grafton, Principal Lecturer and Professional Lead for Physiotherapy, Leeds Beckett University
Professor Mark Johnson, Professor of Pain and Analgesia and Director of the Centre for Pain Research, Leeds Beckett University.

More information:

Cancer Research UK: cancerresearchuk.org/
Macmillan Cancer Support: macmillan.org.uk/
Shine Cancer Support: shinecancersupport.org/.

Fibromyalgia management’s revised recommendations, walking as self-management, and one person’s journey with living with FM

This edition has been supported by the Women’s Fund of Scotland.

Fibromyalgia (FM) affects around 2% of the UK population, with 80-90% of those being women, and being a widely misunderstood condition its exact causes are unknown. Widespread pain is the major symptom; but people with FM may also experience fatigue, difficulty sleeping, memory problems (“fibro-fog”), muscle stiffness, and many others. In 2016, EULAR (European League Against Rheumatism) published its Revised Recommendations for the Management of Fibromyalgia. In this edition Paul Evans speaks to Dr Gareth Jones, reader in epidemiology at the University of Aberdeen who was part of the study group.

Paul also speaks to Dr Kathryn Martin and Fiona Rennie about their work with Walk With Ease, a programme that encourages walking as a self-management technique for arthritis and musculoskeletal conditions like FM. He even has a go himself!

We also hear from Diane about her experiences being diagnosed with FM and her journey using swimming, yoga, and mindfulness as self-management techniques.

Issues covered in this programme include: Abdominal pain, arthritis, epidemiology of pain, exercise, fatigue, fibromyalgia, gender, hypersensitivity, IBS: irritable bowel syndrome, insomnia, menopause, mindfulness, stiffness, neuropathic pain, online course, stomach cramps, stretching, swimming and Walk with Ease.

Contributors:

Diane, Person living with fibromyalgia
Dr Gareth Jones, Reader of Epidemiology, Epidemiology Group, University of Aberdeen
Dr Kathryn R Martin, Lecturer in Epidemiology, Epidemiology Group, University of Aberdeen, Walk With Ease Programme
Fiona Rennie, Walk With Ease leader.

More information:

Fibromyalgia Action UK – fmauk.org
NHS Fibromyalgia – nhs.uk/conditions/Fibromyalgia/.

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