A National Migraine Centre Heads Up Podcast transcript
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[00:00:33] Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr. Katy Munro [00:00:44] Welcome to this episode of Heads Up podcast and I’m just delighted to be welcoming Professor Cormac Ryan and Felicity Thow, who are part of the Flippin’ Pain campaign. And they’re going to be talking to me about chronic pain and what it is, what we can do about it. And we really see so many people with chronic migraine in our clinic that I think this is going to be a very interesting and relevant episode. So would you like to just say a bit about yourselves? Cormac, can you introduce yourself first and tell me about your interest in this area?
Prof. Cormac Ryan [00:01:22] Hi there. So my name is Cormac Ryan. I am Professor of Clinical Rehabilitation at Teesside University, and I’m also the community pain champion for the Flippin’ Pain campaign. And my background is very much- I’m a physiotherapist by training, and I’ve been researching pain and pain education for probably about 15 to 20 years now. And as an academic, I think a lot of the stuff we do is academic for want of a better word. It’s useful in its own right, in that it develops knowledge and moves things forward. But sometimes it can lack impact. Real world impact and actually making a difference on the ground. And that’s really why I got involved with the whole Flippin’ Pain campaign to try and take the research and the knowledge in that very small sphere and bring it into the world and bring it into sort of the public consciousness where I think it can do so much more good. And that’s kind of a snapshot tour of how I arrived to here at this point in my career.
Dr. Katy Munro [00:02:40] That’s great. Felicity, how did you get involved?
Felicity Thow [00:02:43] Yeah, so I’m Felicity Thow and I’m a physiotherapist with a few different roles at the minute, but I started off as a rotational physio in the NHS before I moved to New Zealand to become more of a specifically MSK, musculoskeletal physiotherapist. And it was there that I started to get fascinated by pain really. I think a lot of physios go through the phase of ‘there has to be something more going on than just the tissue’. So this was ten years ago. Went on a couple of courses, notably with Mike Stuart, who is a bit of a pain metaphor genius and I came home, started doing a pain management diploma, post-grad diploma and now currently working in private practice with patients face to face, also alongside some physio education stuff and conference work and podcast work there, but also on the Flippin’ Pain campaign, which is brilliant. I’ve kind of morphed into this role within the campaign and with an interest in persistent pain. As Cormac says, it’s brilliant to be able to reach out into the wider world with this. It’s a challenging area, and it’s certainly challenging when you’re 1 to 1 with people, probably even more challenging when you’ve got the wider public, but a brilliant one. So yeah, an excellent campaign to be involved with.
Dr. Katy Munro [00:04:15] Well, I as a GP when I was working in the NHS saw many, many patients with chronic pain. And that’s where my interests developed. And of course I’ve moved more into the migraine aspect of chronic pain. But in our clinic we still see many, many people who’ve got fibromyalgia or chronic fatigue and other kind of chronic pain conditions that they’re taking medication for that might affect their migraine. So that’s why my ears pricked up when I heard about the Flippin’ Pain campaign. So tell me a bit more about the Flippin’ Pain campaign and what it is and what it sets out to achieve.
Prof. Cormac Ryan [00:04:51] Flick, I’ll let you handle this. Go ahead.
Felicity Thow [00:04:53] Yeah. So essentially we’re a public health campaign and it started- we’re led by our director, Richard Pell, who was the man who set the ball rolling really. It was NHS Lincolnshire who approached Connect Health who are the company who kind of oversee everything and they recognised persistent pain as a public health priority and they wanted to change their current pain service to be more in line with the evidence that we have now about treating pain. And so they, in recommissioning the service Richard put forward the idea of having a more global kind of society-wide campaign to help shift the culture about persistent pain, which would then run alongside the actual NHS pain service. And so we have friends in Australia, so Lorimer Moseley, who’s a very well-known pain researcher, he’d run a public health campaign down there in the southern hemisphere called Pain Revolution. And within that Pain Revolution they have a website, Pain Revolution, they have TameTheBeast.org, which is another of their website resources, but they also went on a cycling tour of South Australia and did public health seminars out there as well as with a brain bus, which is kind of an interactive vehicle that you can learn more about pain with. So we took that- we’re good friends with Pain Revolution and we took their template and planned out that whole thing. And then of course COVID happened. So we have shifted very much online, but we are planning to go ahead with that tour in September in Lincolnshire. So if you’re in Lincolnshire, keep an eye out for that. But yes, in the meantime, because 2020 happened, we’ve done a lot of webinars online, which has been actually brilliant because it means if you live with pain and you’re not in Lincolnshire, you can access it where. Or you live with pain and you can’t get out the house, you can access it. So yeah, we are, as I say, a public health campaign, but a lot of it is about getting that message out, raising awareness certainly of persistent pain. It is a very poorly understood condition and bringing that education to, we hope, flip people’s understanding of pain.
Dr. Katy Munro [00:07:23] I love the name cause Flippin’ Pain. It’s such a flippin’ nuisance, isn’t it?
Felicity Thow [00:07:27] Yes.
Dr. Katy Munro [00:07:27] And then flipping the understanding, it’s just really a key thing. I sometimes feel at the migraine centre we should say ‘we get it’ because we all get migraine but we also understand it. The use of language is quite important, isn’t it? I was very conscious recently when we all met about the difference between chronic- the use of the word chronic by laypeople and by people in healthcare, and I notice you using the word persistent pain rather than chronic. So often people use the term chronic to mean severe, where actually we think of it as something that’s going on for a long time. So I think, yeah, the language is important, isn’t it?
Felicity Thow [00:08:13] Absolutely. And I think that’s why certainly the physios that I interact with, we’ve kind of shifted from using the word chronic. I certainly know what patients mean when they say it to me, when I’m talking to someone with pain, that they have chronic pain. But I think that chronic has a lot of connotations, that things are only going to get worse potentially, that it’s a degenerative type of thing. And so, yeah, I think persistent or persisting pain is probably a more realistic word to use. Yeah, essentially, if someone is listening to this and thinking, ‘well I’ve got chronic pain’, yeah, it’s the same thing.
Dr. Katy Munro [00:08:52] Yeah.
Prof. Cormac Ryan [00:08:54] Language, I think as, sort of, modern day healthcare professionals trying to deliver biopsychosocial care. Languages are like our- not so much our weapons, but our- I’m having a brain freeze. What are those things one might put in weapons? Bullets, for example. And it all depends on how we use those weapons and those bullets. And if we use them well, that can be really, really effective. If we use them badly, we can cause a lot of collateral damage and do ourselves a mischief and our patients a mischief with them as well. And I think the whole chronic pain thing is one of those situations where we got it wrong right at the start. What a terrible, terrible term to use. Chronic pain. All with very good intentions. Within, as we know, the sort of medical lexicon it means long term, persistent, but within the public consciousness it means really bad.
Dr. Katy Munro [00:10:04] Yeah.
Prof. Cormac Ryan [00:10:05] It means, you know, excruciating, awful. You know, to any negative adjective you can get resonates with the word chronic. And so when we keep talking about chronic pain, we just kind of perpetuate that view and understanding. And we don’t do it consciously. We don’t want to be doing that. But I think we are. And I think that’s part of the reason why the campaign talks an awful lot about persistent pain. I think persistent pain is a very different term that means the same thing medically but to the patient, to the people that matters, it’s a much clearer term and a much less loaded term.
Dr. Katy Munro [00:10:59] It doesn’t have that kind of feeling that it’s there forever and you’re just going to deteriorate, does it? It’s persistent. It has kind of an unspoken at the moment but in the future we’ll help you to manage it better. I always feel that’s my impression of it when I hear people making the difference. What would you say then was a definition of when you would say somebody’s got acute pain and when somebody’s got persistent pain? Cormac, is there a kind of definition that people will say, ‘Well, have I got acute or have I got persistent’?
Prof. Cormac Ryan [00:11:35] Well, I’m going to get really dull on you now, Katy. I can imagine your listener’s taking a quick five minute snooze as we talk about this topic. But I’ve got a PhD student, Mary-Anne Jess, really exciting young researcher who’s focusing in very much on this question of duration and the role of pain duration on outcomes. And part of her PhD was a kind of a history fact finding mission where she did a search through the literature, but it was as much as sort of a Indiana Jones archaeology search rather than the usual boring academic search where she really delved into old, old texts to try and find where did these terms chronicity, persistent etc. come from? When they originated? Who said them? What did they mean? Did they quantify them in terms of weeks, months and all the rest of it? And why? Why did they say those particular time frames? And it’s really interesting. The time frames seem to range everything from 7 weeks up to kind of 3 years in terms of what is chronic persistent pain. Though the vast majority of the literature says either 3 to 6 months. And I think if you look at the most public bodies around pain, they’ll say a pain that’s lasted 3 months or more is what you would a kind of rubber stamp as persistent pain, and the reasonings and rationales is fascinating. For some, the origins of those dates were associated with proposed normal tissue healing times. Normal tissue healing times are sort of guessed at about 6 to 12 weeks and it’s kind of proposed that pain persisting beyond that is persisting beyond normal healing times and is kind of linked to persistent pain. Others have been more socially constructed and are associated with things like times when people return to work. So studying employment data and employment history related to injury and how people seem to come back within a sort of a 6 month timeframe and anything going beyond that was viewed as chronic. But of course that was all underpinned by, sort of, payment in relation to being on sick leave and people’s payments running out at 6 months. And thus, many of them coming back, some being ready and some not being ready, regardless of the sort of that issue. It was just simply that they had to come back for various socio-economic reasons. And that in itself has fed in to our definition of persistent pain. But we don’t really know that or think about it because it’s buried in the history books. So in answer to your very simple question in terms of what is persistent pain? I think that 3 month marker is kind of accepted within the literature as anything beyond that is kind of classed as persistent pain.
Dr. Katy Munro [00:15:31] That ties in quite well with people with chronic migraines. We tend to say, you know, if you’re getting more than 15 episodes of migraine in a month, for more than 3 months, then we would class that as chronic migraine. Whereas if it’s under that, we call it episodic migraine. So yeah, the 3 months may have been chosen for different reasons, but I think it’s quite universal out there when we’re thinking about people with pain. So I know the campaign has got 6 key messages, am I right? I think it’s 6. Do you want to just talk about those maybe one by one? And what messages do you want to give to people about pain? What is pain?
Prof. Cormac Ryan [00:16:18] Flick? Do you want to tackle this or will I? Totally up to you.
Felicity Thow [00:16:23] Yeah, I’ll go with this one. So yes, we do. We have 6 key messages and we wanted something snappy that people can take away with them. But we then have developed lots more resources to go into more detail on them. But they are: persistent pain is common and can affect anyone. I think a lot of people think that maybe it only effects older people or people with other health problems. But actually you can be any age and it is probably more common than we think. Remind me the stat Cormac, is it 30% we’re estimating a 30 to 50%?
Prof. Cormac Ryan [00:17:04] It all depends on, again, what you read. So 30 to 50% of people in the UK experience persistent pain. That’s kind of the you know, if you’re looking at a house price, you might say it’s somewhere between £80 to £100,000 or something to give you a range, but I think there’s subsequent evidence is more towards that sort of 33%. That one in three people experiencing persistent pain.
Dr. Katy Munro [00:17:35] That’s a lot, isn’t it?
Felicity Thow [00:17:37] A huge amount for such a- we so poorly understand it. Yeah. It’s a lot of people. Our second message is that hurt does not always mean harm. Which I think sometimes can really make people go ‘sorry?’ Because we’ve always assumed that when you get hurt it’s because you’ve done some damage and then the pain is telling you to stop. That’s what we assume. So hurt does not always mean harm is I think sometimes quite a confronting message and one that we can certainly go into more detail as we talk as well. Everything matters when it comes to pain is the third one, which again, we do mean everything. I sometimes liken it to, you know, I did a social media post before where if you go to a football match, everything matters to your experience. You know, whether you won last week, lost last week, whether someone’s kicking the back of your chair, you had an argument before you left the house. It’s not just what’s happening right in front of you in that game that affects your experience of that. If you’re lucky enough to get to a football match these days and not be a Newcastle fan. But everything matters when it comes to pain as well, your emotions, your past experience of it, your sleep you had last night, sometimes what you had to eat, you know, over the past six months. Everything matters when it comes to pain. Then we go to medicines and surgeries are often not the answer. Which again, I think a lot of times we talked about the chronic timeframe- persistent timeframe being at 6 months and a lot of people assume, ‘well, if I’ve got pain for more than 6 months, it must be because I haven’t had normal tissue healing. It must be I’ve not healed. I need to be fixed and that’s what surgeons do, or maybe that’s what medicine does’. But actually when we talk about why we get pain, we’ve come to understand why actually targetting simply the tissue itself is maybe not the answer. Understanding pain can be key is our next one, which is huge. Again, this will all become more clear what we talk about what pain is, and its relationship to threat within the nervous system. And when you understand pain, it can often be a very reassuring process. I always think when it comes to pain, uncertainty is one of the worst things. Uncertainty is one of the key causes of suffering, I would say. And again, I always say when it comes to pain, pain itself is not a nice thing, but then all the secondary stuff like the fear and the uncertainty and the effect that has on your life, that’s often the thing that people come to us with problems with. But understanding pain can be really helpful in that. And finally, recovery is possible, which is maybe even the most contentious one, because a lot of people with persistent pain, it’s persistent. It has been there for a long time. And when we say recovery is possible, it certainly is. We’ve got people who live with pain themselves, who are friends of the campaign, who we work with very closely, who will say, ‘yeah, I feel like I’ve recovered. I feel like I- sometimes I still get pain, but I feel like it doesn’t affect my life as it once did. Sometimes my pain is much more well controlled’. So I think recovery, it’s important to say, it looks different to everyone. But certainly we’re big advocates that it possible. We’re human beings. We’re always adapting and we can change.
Dr. Katy Munro [00:20:56] I think that’s a really important message of hope, isn’t it? Because even if you’re not talking about complete recovery and we very rarely use any kind of words about cure or, you know, especially with migraine, which is a genetic lifelong condition, we’re talking about improving to a state where you can have a much better quality of life. And I think, you know, we’re having the same message in our clinic as your saying on the Flippin’ Pain campaign, you know, it’s don’t give up hope. There’s lots you can do to improve.
Prof. Cormac Ryan [00:21:31] It’s probably the most important message, I think. That sixth and final message, that message of hope. And Felicity is right. It is probably our most contentious point. It is the one that raises the most eyebrows when you say, you know, people can recover from pain. But just as Flick said, we’re not necessarily talking about a resolution of pain, although in some cases it may well do so and it certainly can reduce. There’s plenty of evidence to show it can reduce. But for someone else, recovery might be going back to work despite their pain or simply feeling better in themselves, despite their pain. It comes in many shapes and sizes, and we’re just helping to make that clear, to bust that misconception that nothing can change. It can change, and it can change for the better, and it can change drastically for the better.
Dr. Katy Munro [00:22:41] One of the things that we see with our patients with a lot of chronic migraine is the impact on their relationships with other people. And I remember a patient who’d really done very well on the change of treatment that we’d done and she said, ‘my daughter said to me, Mum, we’ve had a whole weekend where you don’t have a migraine and we’ve managed to go out and do shopping and have a normal weekend’. And the joy that that brought her, even though she was still occasionally getting a migraine breaking through, was just huge for her, really. And it’s improving. It’s a ripple out effect, we always say, with migraine there’s a ripple out effect to other people that you’re in contact with. You know, sometimes people can’t look after their kids or sometimes they can’t socialise with their friends because they’ve got to cancel because they’ve had an attack or whatever.
Prof. Cormac Ryan [00:23:38] It’s a two way relationship. So just as you kind of highlight there that the experience of the person with pain can influence those around them, how those around them behave and talk and move and all the rest of it influences that person with pain. And there’s an enormous wealth of scientific data around this. Some beautiful studies done in families with partners for example. Showing that how partners perceive the feelings and behaviours of the person with pain, and vice versa, influences the amount of pain the person experiences, which I think is mind blowing and why it’s so important that within the campaign we’re not just trying to target people who have pain, we’re trying to target their friends, families, carers, relatives, employers, everyone, because as flick already said, everything matters when it comes to pain and all the people around us, and how they behave and talk, influences the pain we experience and how we manage it. And in so doing and kind of appreciating the social role of persistent pain.
Dr. Katy Munro [00:25:09] I think that’s so important. So should we get a bit scientific, Cormac? Do you want to tell me about what’s going on in the brain? So it’s not a simple process, is it? And I always say to patients in clinic with migraine, you’ve got migraine, you’ve got the pain from the attack, but also many of them have got brain fog, they’ve got dizziness, they get anxiety about attacks, they get depression when they can’t work or do what they want to do, but it’s all one brain. So what’s happening?
Prof. Cormac Ryan [00:25:42] Oh, so much is happening. I probably- I reduce it down to a sensitised alarm system. I like to kind of think of it a little bit like there being a person inside your brain. I’ve affectionately called her Assumpta and Assumpta- I use the metaphor of of Lady Justice, you know, with the scales and the blindfold and the idea that she’s constantly receiving information and that information is coming from our bodies, but it’s also coming from other people. It’s also coming from our eyes. It’s coming from every perceivable source you can imagine. And she’s weighing up on those scales, threat and safety with respect to our tissues and where the information. And the sources of information weigh the scales towards threat, encourages her to want to protect our tissues, to want to draw the conscious person’s attention to the problem and to get us to do something about it, to get us to act. And the best way to do that is to produce pain, to fire that alarm system, because that’s the way of getting us to protect ourselves, because the purpose of pain is protection. That mantra that Lorimer Moseley always uses within the Pain Revolution and we very much use within the Flippin’ Pain campaign, that idea, that pain is protection. If she tips- if her scales tip in the direction of threat, danger, she will produce that pain in the area she perceives the threat to be in order to draw your attention, to get you to do something about it. Otherwise you’d be completely unaware of any issues. In contrast, if all the information loads in a way that encourages safety, that suggests the tissues are safe, are not under threat, then there is no need to draw the conscious person’s attention to it. No need to get something done about it. And there’s no need to produce pain, no need to protect those tissues. And in persistent pain, those scales get unduly tipped towards threat. They’ve become skewed over time and the threatening information becomes more heavily weighted. And that’s why, again, coming back to everything matters when it comes to pain. The sources of information that we seek from health care professionals, from the Internet- terrible place sometimes to get information from and also sometimes a brilliant place, it all depends on where you look. All of this can feed into that alarm system within the brain. And personally, I believe that the vast majority of the information out there in the ether is negatively skewed. It is towards threat. And I think Assumpta has a penchant for threat. She particularly seeks out threat to try and protect us, because without pain we’d be so lost. Pain is such a wonderful, wonderful thing normally, but in the long term, obviously it can devastate lives. And I think, again, that comes to the importance of the campaign. Starting to push against the tide and starting to get more positive, accurate information out there, because there’s lovely evidence to show that positive, accurate information can reduce the threat value. And in so doing, we can not only help people to sort of manage their pain better and reduce the fear and anxiety associated with pain, we can also actually directly influence pain itself and begin to help to move it in the right direction.
Dr. Katy Munro [00:30:38] So Felicity, can we talk a bit more about that hurt doesn’t necessarily equate to harm, because I think that’s the crux of it, isn’t it really, that if somebody has had an injury and they assume that they’re going to do damage if they have pain when they move their sprained ankle or go for a walk or something like that, they listen to Assumpta and think ‘I’d better protect myself from the pain’ and they stop doing things. But the actual injury may not be as- may have healed and persistent pain is what they’re left with.
Felicity Thow [00:31:22] Yeah, absolutely. So in some cases and if you have literally sprained your ankle yesterday or you’ve, you know, gone on a sprint and strained your hamstring three days ago, then that pain is useful. That’s really useful. It’s within the healing timeframes. It makes sense that that would be uncomfortable. It’s telling you to maybe give the running or the walking a bit of a break for a few days while it settles. And normally we’d expect that tissue to heal within 6 to 12 weeks and you get back on your feet and off you go. But in persistent pain, if you- as you say, there may have been a tissue injury to start with but as Cormac said, there may not have be. We can have pain without any tissue damage and often if we have tissue damage, then yeah, granted, like a sprained ankle, we want to protect that tissue while it settles down and heals. But sometimes when it comes to persistent pain, we can end up protecting an area that actually is already very overprotected by Assumpta, by the nervous system. And not only that, but then you stop doing the thing that often it’s the things that you really like doing as well, maybe the non essential stuff in life. So I tend to find when people have been living with pain for a long time, the things that they have to do, like maybe go to work, look after the kids, go to the shops, they really struggle to get those things done but that’s the priorities. The things that don’t get done are the things that make them feel relaxed and enjoy themselves, like going out for a walk or going to the gym or dancing or spending time with friends, lots of standing or sitting, for instance. And so we can end up reducing some of the things that would actually help our nervous systems, help calm that nervous system down, help us make us feel like ourselves again. We end up reducing those things because we think we need to let the tissues heal but if we’re more than, say, three months and certainly six months, one year afterwards, then actually maybe we’re doing ourselves a disservice by- and it makes perfect sense why you would want to rest, because we’re always saying ‘oh, I’ve got pain so rest’, but actually in persistent pain maybe the next step would be to look at what is the best decision here? And that’s where the campaign comes in. Because as we say, if you don’t understand pain, keeping moving makes no sense at all because you think you were doing some more damage. So hence where the education comes in.
Dr. Katy Munro [00:33:47] And the anxiety and mental health issues around chronic pain or persistent pain are really, really common, aren’t they? So what I’m hearing from you both is that we need to have a very multifaceted approach to people with persistent pain and get them to explore not only their understanding of the pain, but also what suits them as an individual to try and help them get back into their lives.
Prof. Cormac Ryan [00:34:17] Absolutely. I think, again, coming back to the campaign, our goal is to provide that information so that the person can then make informed choices about the care that they seek and try out. As a society we’re hugely ingrained into the biomedical model. This idea that hurt equals harm, that if we have pain it must be due to tissue injury. And if that pain hasn’t resolved, then it means that the tissue has not healed. And that model is simply incorrect. But it’s so alluring. And so easy to understand that it persists and it’s just not being checked. Not enough people are standing up and saying, you know, this is not a correct model. This model is wrong. And we’ve got buckets of scientific evidence to demonstrate that. And until we do, I think people will always tend towards making choices that are not evidence-based, that are not best for them, because based on the limited amount of information they’ve been given, the choices appear to make sense. And our evidence-based choices, such as active physical and psychological therapies, they don’t make any sense at all because, you know, if you are of the opinion that you’re back pain, for example, is due to disc degeneration, what possible good is mindfulness? It doesn’t make any sense? Whereas if you begin to get told about things like the biopsychosocial model, if you get information that helps you to better understand why what we think what we feel directly influences our pain, then it begins to- interventions such as mindfulness and physical activity, suddenly they begin to make sense. And you’re more open to them and you’re more open to trying them. And that’s the key towards better management. So providing people with the information and the tools to make the right choices that’s, again, I think really, really important. And that’s what the Flippin’ Pain campaign is really trying to do.
Dr. Katy Munro [00:36:58] I’ve watched some of Lorimer Moseley’s webinar things. Very entertaining, and he has a lot of kind of examples of how the brain is a predictive organ and predicts so that if you think you’re going to have pain, you’re much more likely to have it. And I always remember as a GP when we used to have children being brought in by their parents and they were going to have an injection or something like that, the parents would go, ‘Oh, you’re not going to like this, little Johnny. The doctor’s gonna..’ And you’re just like, ‘No, please don’t say that’ because you’re setting a child up to have a bad experience. And once that’s learned, the next time they come, they’re going to be fearful in the waiting room, let alone when they’re walking in the door to see you.
Prof. Cormac Ryan [00:37:50] Absolutely. And that’s where Assumpta comes from. So Assumpta is an assumption, so Assumpta makes the assumption that the tissues are in threat and thus wants to protect you and she produces pain. But my daughter twisted her ankle yesterday when I went in to pick her up from nursery and you know it had swollen up a little and I went in- I’m always kind of trying to say, ‘Oh, okay. Oh, well, you know, that’ll be okay’. And the staff- very helpful and lovely staff, were like, ‘I think, you know, it’s something that I’ve had before and it’s always affected me throughout my life. Maybe she’s got the same thing’ and I’m like, you know, in a very positive and nice way, she was trying to trying to be helpful. And I was like, ‘Oh, yeah, but this girl recovers really, really quickly. She’ll be fine. She’ll be fine.’ So as not to sow that seed that the ankle is weak, that the ankle is destined to continually be problematic. And, you know, we do it without knowing. And so if we understand it better, we can begin to sow the seeds to counteract those negative thoughts and believe it.
Felicity Thow [00:39:16] Let’s be honest about where they come from a lot of the time as well as a health care professional, it’s sometimes us. It’s the scan report that says, ‘oh, degenerative disc disease’ and then it’s the physio who interprets that to you as ‘this is only going to get worse and like, don’t bend because you might bust this disk’. No wonder people then avoid movement and that Assumpta is fuelled up, that protective nervous system is fuelled up and that’s work we need to do as well is with ourselves as healthcare professionals.
Dr. Katy Munro [00:39:50] I really agree with that. I think neck x-rays are dreadful things because pretty much everybody over the age of 21 has a bit of changes on their neck x-ray. But if it’s x-rayed and people are told, ‘Oh, you’ve got wear and tear’, they stop, they start to tense up their neck and shoulder muscles and that gives them tightness and that compresses everything and the whole thing turns into a self-fulfilling prophecy, doesn’t it?
Prof. Cormac Ryan [00:40:19] It’s another weight that’s dropped into Assumpta’s weighing scales, that tips that balance more towards threat. That makes it more likely that information coming in will be perceived as threatening and thus more likely she’ll produce pain.
Dr. Katy Munro [00:40:40] It can go the other way as well, can’t it? So I think I’m much more conscious of the way that I explain to patients with any type of therapy that we’re discussing, that the words we use are so important. So I know of a doctor who says to patients, ‘Well, you can try it if you want, but it probably won’t work’. And you know, that patient’s really not going to have any confidence in that and it probably won’t work because they’ve been told it won’t. Whereas if we’re sort of saying, ‘well, that’s a really useful thing for you to explore and it may well suit you very well’, they’re much more likely to explore it with an open mind and get some benefit, whatever that is, whether it’s medication or mindfulness or yoga or taichi.
Prof. Cormac Ryan [00:41:29] Absolutely. As health care professionals, we need to be really reflective on our own thoughts and belief systems and our own behaviours. If we’re giving things to patients, then if we don’t believe in them, why are we giving them? You know what a colossal waste of everyone’s time. I always say to my students, if you’re giving something to a patient, even if you don’t believe it’s going to have an enormous effect, you should adjust your language so that you emphasise the positive aspects where you can. Not to lie to your patients but if you’ve given them a set of exercises, you must be giving them because you believe these are the best exercises to give. So you say that. ‘These are the exercises that I think are the best ones for you, can you do them?’ Rather than, ‘I don’t think they’ll work’, which is completely shooting yourself in the foot. Again, I love this idea of language and it’s something that I’m kind of delving into at the moment and how powerful what we say as health care professionals is, so much to the extent that we can actually completely influence whether there’s a positive or negative response to an inert thing. The words we give can dictate whether the person has a beneficial effect or not, regardless of the thing we give. The words are hugely powerful. And it’s not just with respect to pain. It’s actually a variety of responses. There’s some beautiful evidence coming out from Harvard where they used these wheels. They used them to look at responses to- what’s the word I’m looking for- allergies. So these wheel allergies that you kind of apply on to see how people respond and basically the wider the wheel on the skin, the greater the allergic response. And by applying these wheels and then either saying- what they’ve done is they’ve applied a cream and simply said, ‘oh, this cream is great, it’ll reduce the size of the wheel’ and it does. Or if you say, ‘this cream is really bad, it’s going to actually increase the size of the wheel’ and it does. And this is not something that’s so, you know, we think about pain as being something that’s subjective that we can be influenced by. This is a very biomedical inflammatory response, which is simply responding to what it’s being told to do. That’s why I think there’s an Assumpta in there for inflammation, doing the exact same thing, you know, responding to all that information and saying, ‘do we need inflammation?’ You know, all those bits of information, just tell her how to respond.
Dr. Katy Munro [00:45:05] Yeah. It’s really fascinating, isn’t it? I think the other thing I’m very conscious of is the messages that we tell ourselves, and that’s where CBT can be quite useful, can’t it, to help people unpick what messages are telling themselves. So, you know, you hear of people who often when they have a chronic condition like chronic migraine or persistent pain, they feel quite guilty, they feel a burden and useless and so they tell themselves that’s true. ‘I’m useless, I’m such a burden. Everybody must be thinking this’. They sort of predict what everybody else is looking at them and thinking and saying, and they don’t recognise the positives. So they’re very focussed on, ‘I did that wrong, I couldn’t do that so therefore everything is pointless’. And by kind of repeating those messages to themselves, they actually make themselves feel worse, more isolated, and possibly make the pain worse as well. So I think CBT can be really, really useful and people can access it quite easily now, can’t they? You can self-refer through the IAPT service. What do you feel about other forms of sort of psychological interventions? I know unfortunately some people think that if you say that there’s some psychological therapies that can help, that you’re saying that they’re making up and hopefully everything we’ve said up to now is to explain that everything matters in pain.
Felicity Thow [00:46:42] Yeah, I think it’s a huge, huge thing, isn’t it. I think often if you say, ‘let’s refer you to a pain psychologist or let’s use some psychological strategies’, then the word psychological has these connotations that ‘ oh, are you saying it’s all in my head’, which no. Our big number one thing is that your pain is always real. That if you’re feeling it, it is real pain. Regardless of whether it’s tissue damage or not, it’s still real pain. And as you say, that then links in with the impact, as I say, the sensation of pain, not very nice, but then the feelings and emotions that come with living with pain, the feelings of shame that, you know, ‘I’m not a good parent anymore because I can’t get down on the floor and play with my kids. I’m not a good teacher anymore because I can’t concentrate, because I’m not sleeping, because of the pain’. Huge, huge impact. And I think that comes out a lot when we’re talking to people with persistent pain and as you say, what we tell ourselves sticks. Which is why mantras often work and hopefully they are positive mantras. But yeah, we tell ourselves these things, ‘it’s because my back is weak’ again possibly because we’ve been told that maybe in the past, maybe incorrectly. ‘I’m damaged. I’m a terrible parent.’ That’s sort of thing. And we do. We start to believe these things. So certainly strategies that confront those thoughts. Sometimes we don’t even realise we’re saying it or we don’t realise it’s not true until we try something like a psychological intervention like CBT. So I think that’s a huge part, definitely.
Dr. Katy Munro [00:48:20] I think self-compassion is also something I’m really interested in. Because we very often- we treat our friends or family much more kindly in the things we say, in the things we than we do ourselves.
Felicity Thow [00:48:33] Absolutely, absolutely. I often say to people with persistant pain who have talked to me in a consultation, I go, ‘What would you say if this was your friend, you wouldn’t say, well, you are a terrible friend because you didn’t come to this party because you had pain. You wouldn’t’. But we do. We treat ourselves so much differently. And no wonder, again, that impacts our nervous system, again, it has that impact. Is that a relaxing feeling? That makes us feel ourselves? Not in the slightest.
Dr. Katy Munro [00:49:07] What about the role of communities? I’m aware at the moment of a number of forums on Facebook, for people with chronic migraine or other pain conditions, and sometimes I think those can be a huge source of support to know that you’re not alone, especially if you’re feeling isolated and the pain is, at the time, stopping you doing things. But there’s also that worry that people might just hear very negative stories. What do you feel about communities? The Flippin’ Pain community hopefully will be a much healthier forum for people to join.
Felicity Thow [00:49:49] It is a very good point. You’re absolutely right. Yes. Sometimes it can be a lot of other people’s beliefs that maybe they haven’t gone on this pain journey yet. And they’re very- you’re listening to the advice of the past to rest and to avoid this and to have that surgery and possibly it’s not the greatest advice to take. But then I also agree that living with pain can be very isolating. And so having a community is so powerful, it’s one of the biggest problems in the world at the minute, isn’t it? Isolation and loneliness and, again, is that something that’s going to make our nervous system feel safe and protected? Nope. It’s potentially going to fire up that protective instinct. Would you agree, Cormac?
Prof. Cormac Ryan [00:50:37] Absolutely. And I feel strongly that it’s our responsibility to reach out to these communities. They have enormous potential for good. And again, they can only use the information that they’re being given and they’re more than likely being bombarded from all different areas of the globe with information that’s inaccurate and unhelpful and thus, that perhaps can occasionally dominate the conversation. If we can get out there with our positive, accurate information. We can feed into that conversation and help to harness the huge potential good that’s within these online communities or indeed face to face communities when hopefully someday they come back. Yeah, enormous potential for good if we can help them.
Dr. Katy Munro [00:51:37] I think I wanted to ask you guys about the role of health care professionals against the responsibility of the individual to explore self management, because I think that’s a message that I really try and get across to my patients in clinic is that, I would like to work with them but they are in charge. They’re in charge of their destiny, in a way. They need to understand what migraine is. They need to understand what’s going on in their brain. They need to know what the options are that might be helpful and they then can choose. So I think self-management is a really important thing. And of course GPs in surgeries have ten minute appointments, very, very short time so, you know, health care professionals like yourselves with the campaign can spread that kind of message as well.
Felicity Thow [00:52:35] Yeah. One of the big things that people ask us after events is often, ‘So what next? Where do I go now to start implementing all of this?’ And you’re absolutely right, a lot of it is self-management. I hope nobody’s listening to that thinking, ‘Oh, that’s palming me off to manage it on my own’, you know, because that’s absolutely not what we want. If you feel like you need some help. The way I see myself as a health care professional, particularly as a physio working with people with persistent pain, is as a coach. The person who’s not, you know, taking the bat off you and hitting the- I’d be terrible at that anywway- but the person with the advice, with the guidance, with the education but ultimately, yes, you have to live- you might see me once a month and you’re living the rest of that time completely with that pain. And so I think, yes, seeing us as more of a coach. We often say that there is no quick fix for pain. We wish there was. And I’d be very wary of anyone who’s trying to sell you a quick fix for pain- persistent pain. And I think as health care professionals, it’s hard to admit that as well. There’s probably nothing I can do with my bare hands that’s going to long term impact your pain. We went into health care to help people. It sometimes it’s a very difficult thing to change. But absolutely there’s this huge power in what that individual could do for themselves and it can feel very overwhelming. I completely appreciate that. ‘Well, I have lived with this pain, and I’ve tried X, Y, and Z a million times. How is this going to be any different?’ I think there’s massive power in really understanding pain. And then I would say yeah, avoiding health care professionals that do offer quick fixes or very, very passive things that you have to see them again and again and again and again for. And really finding someone who is more of a coach. Who really gets this kind of stuff.
Dr. Katy Munro [00:54:26] I think people are desperate to get- to feel better, aren’t they, and so they are quite vulnerable to the ‘give me a lot of money and I’ll give you this one thing and you’ll be amazingly better’. And I really caution people not to be shelling out large quantities of money on non-evidence-based therapies. I think of people- I mean I try and- prefer the idea of people getting together their team. So part of self-management is to work out who you want on your team and that might be your partner or it might be your employer, or it might be your teachers at school, or it might be a health care professional or somebody who sees you and you go and talk about your worries. It’s getting all of those things in place to help you manage yourself and your pain, isn’t it?
Prof. Cormac Ryan [00:55:17] I think it’s supported self-management.
Dr. Katy Munro [00:55:21] Yeah.
Prof. Cormac Ryan [00:55:21] Which is something fundamentally different to self-management. One of our Flippin’ Pain friends, Pete Moore with the Pain Toolkit. An approach that I’ve got a great deal of time for and I really love the stuff that Pete is doing. He uses that mantra of putting the person with pain in the driving seat. You want to be the person in charge of where you’re going and how you’re managing things. And I think as Flick said, our role as coach, it’s in the passenger seat. Kind of giving suggestions for which route to take. If I think about- so whenever I go on long trips with my wife, even short trips, to be honest, without her I would be both metaphorically and literally lost in terms of which road to try next. And I see our role as health care professionals in that role and giving people the confidence to get behind the wheel and make the choices as to which way to turn it. That’s what we are- we should be about.
Dr. Katy Munro [00:56:45] There are some risks, aren’t there, of- for people who haven’t started on that journey that they’re going to be subjected to a lot more investigations, a lot more prescribing, a lot of, maybe, some toxic medications that can be addictive. And, you know, until they kind of realise, ‘hang on a minute, I need to find out more about this’, I think it can be quite a difficult time, a risky time for them.
Prof. Cormac Ryan [00:57:13] A hugely risky time. I like the whole ‘stages of change model’. And this idea that we’re all at different points on the journey and sometimes we’re ready to hear certain messages and sometimes we’re not. And often at events where health care professionals are there, they ask, you know, ‘when should we bring up this science information or when should we try and bust some of these myths?’ And my feeling is that we should be doing it all the time, regardless of where people are on that journey. But we should tailor it and our expectations should match where people are on that journey. For those who are perhaps in the sort of pre-contemplative stage, who are not even aware that there’s necessarily a problem with the approach, the management approach, they’re taking of a very biomedical approach. I still think these messages are important, but they perhaps need to be delivered with a great deal of care and caution and sensitively and empathically, but they might be able to help to move someone from that pre-contemplative stage towards the contemplative stage. Whereas for someone who’s in that contemplative stage or even in that action phase, these messages can help to bolster and move them maybe from action to maintenance. So these messages are always useful and they can come in at any time on that journey. But as a health care professional, you perhaps shouldn’t be too disheartened if it doesn’t appear that you’ve made an enormous dent in the person’s understanding and view, because what you may have done is simply sowed some seeds that, over time, might turn out to be- that person would pinpoint back in a year’s time actually being in a place where they’re like, ‘I know I need to change. I know there’s a different way, but I just don’t really know how to embark upon it. Help me.’ And so, yeah, there’s plenty of people will be getting the wrong advice and embarking upon the wrong path at the moment, leading to lots of iatrogenic care and inappropriate scans and medications, etc. But all we can do is continue to be there to support, listen, provide good information and then, when the person is ready, help to move them along to a different way.
Dr. Katy Munro [01:00:30] Hear, hear. That’s partly why we started the podcast, because we were feeling that the same applies to anybody who’s suffering from migraine. Because we were saying the same things and explaining and educating as much as possible over and over in the clinic and the podcast is a good way, so hopefully this will reach out to people in the same way.
Prof. Cormac Ryan [01:00:51] But just one last point on that, and I think it’s about- Flick talked about the idea that persistent pain is a persistent condition, that you have to keep working on this all the time. And I think this belief system, this biopsychosocial understanding as a health care professional is something you have to keep working on all the time, especially when you yourself experience pain because it’s so easy for you to begin to really question the biopsychosocial approach when you’re faced with some evidence that contradicts that in your mind. And it’s true when you see a patient and you’re with them and they’re clearly experiencing pain and there’s almost a sense of urge to help and look for a quick fix for them that’s not in keeping with a biopsychosocial approach. And you always need to continually reflect on that. Like, you know, the whole- all of our six key messages, you know, hurt doesn’t equal harm, for example. I so believe that. You know, with every fibre of my being but then there are some days when I go, ‘Oh, am I sure?’. You know, something suddenly happens. And so just as people with pain need to continue to work on managing their pain, I think we as healthcare professionals need to continue to manage our understandings and our beliefs and continue to work at them in a way that is towards scientific understanding and that’s no easy feat.
Dr. Katy Munro [01:03:03] One of the techniques that I like, that I discovered when I went to a conference run by Georgie Oldfield, who runs the SIRPA organisation which looks at people with chronic pain, and they had speakers there talking about the role of writing. And just simply sitting down and writing everything down that you’re thinking that pops into your brain for 20 minutes every day for 4 days seems to help some people unlock things. So I’m constantly trying to look for new ways of finding options to offer to patients and trying to do them myself, occasionally. And I have to say, sitting down and writing what you’re thinking for 20 minutes, it’s hard because I struggle to find 20 minutes where I can sit- I struggle to remember to do it, and then sitting and writing for 20 minutes is quite a challenge. So I think we have to be conscious that we’re offering things which are realistic and practical and you know that we can genuinely say this is worth a try. Anything else that you would like to share with us? I think we’ve covered most of the points that I was hoping to discuss in this episode.
Prof. Cormac Ryan [01:04:24] Well, if you wouldn’t mind us shamefully plugging the peloton.
Dr. Katy Munro [01:04:28] Yes. Plug plug.
Prof. Cormac Ryan [01:04:31] That would be great. Flick, you know infinitely more about it than me.
Felicity Thow [01:04:37] Well, yes. So in September, we are heading out on a tour, as we say, to Lincolnshire. We’re going around the county. It will start on Sunday 12th and ends on Friday 17th of September. We’re going all around the highlight points, Grantham and Skegness so it will be brilliant. And as we say, we are taking a brain bus to start with. So I’m one of the ‘bus-kateers’. I made that up this week. Very pleased. Thank you. We are taking, as we say, the bus which will involve things like if you’ve never heard of the rubber hand illusion, come and see our rubber hand illusion. Some nifty ways of showing you how easily the brain can be swayed by information that even you know is not true. Like if you’re wearing a VR headset and you walk into a plank, you know you’re standing in a very safe field, but you feel like you’re on top of a building. We’re going to be using stuff like that to help demonstrate why persistent pain is what it is. Alongside that, we also have some riders doing a peloton and this will, in large part, be in aid of Pain Concern, who are our charity partner. So it will be raising money for those guys. They’re brilliant. They have a help line for people with persistent pain. So yeah, anything we can do to help them is fantastic. There will be, alongside the brain bus and the peloton, evening and potentially morning seminars as well. So if you’re local to the area, come along. If you’re not local, please do check out our website as well because we’ve recorded all our events up until now, both the in-person ones and the webinar style ones. So if you go to www.flippinpain.co.uk, on the events section- have a scroll down. We’ve also got a YouTube channel if you want to search Flippin’ Pain (flippin’ without the G, flippin’ like a pancake, without the G) on YouTube.
Dr. Katy Munro [01:06:35] That’s excellent. Sounds amazing.
Prof. Cormac Ryan [01:06:38] Yeah. It’s going to be a really exciting sort of extravaganza where we hope that there’ll be something there for everyone and that it’s not just dull science, that it is entertaining and engaging and something that people will actually enjoy when they experience it, rather than something necessarily that, you know, you feel like you should do because it’s on. This is something that people should want to come to because they’ll have fun, I guess. Also want to plug the Flippin’ Pain Formula, which is on our website as well. So this is a bespoke set of resources that include infographics, animations and podcasts related to persistent pain and our 6 key messages. And we’re really, really proud of that. And it’s a way of increasing accessibility to the events that we have. The same content, the same stories, metaphors, jokes, etc. are on and part of that Flippin’ Pain Formula. And you know, for those who can’t make the events for whatever reason, check them out there.
Felicity Thow [01:08:08] It will be the resource page of the website, that one.
Dr. Katy Munro [01:08:12] We will put all the links in the blurb for this podcast episode so people can find them there. So I was just going to summarise by saying thank you so much. This has been really a fabulous recording and I’m very pleased to have connected with you guys and wishing you great success with that tour. And maybe we’ll try and pop up myself, but we’ll talk about that after this recording.
Prof. Cormac Ryan [01:08:37] Thank you so much. Bye bye.
Felicity Thow [01:08:39] Thank you for having us. Thank you, Katy.
Dr. Katy Munro [01:08:41] Bye.
[01:08:45] You’ve been listening to the Heads Up podcast. If you want more information or have any comments, email us on info@NationalMigrineCentre.org.uk. Till next time.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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