Pain Concern

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

To listen to this programme, please click here.

Prefer a PDF?Download

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/.

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.

Prefer a PDF?Download

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/.

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

To listen to this programme, please click here.

Prefer a PDF?Download

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

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.

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

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 healthcare professionals.

I’m Paul Evans. And this edition of Airing Pain has been supported by the Women’s Fund of Scotland.

Diane Edwards: It’s a pain that can just appear out of the blue at any particular moment, in any particular part of the body. And it’s not just the pain, it’s the other symptoms that go along with it.

Evans: Fibromyalgia affects around two per cent of the population, and of those who have it, 80 to 90 per cent of them are women. And just some of those other symptoms that go along with the pain are fatigue, muscle stiffness, difficulty sleeping, problems with memory and concentration, and the list goes on and on and on. As Diane Edwards, a long time sufferer, explains.

Edwards: My first symptom of course was the irritable bowel syndrome, and that was when I was 18 years old. I used to get a lot of stomach cramps, a lot of diarrhoea and constipation, and I was tested for lots of different conditions at that point, and it was called irritable bowel. It all sort of came a bit to a head when I went through the menopause. That was 12 years ago now. And everything just sort of kicked off, everything just went a bit wild. I started experiencing lots of other symptoms, acute abdominal pain – I’ve got three children, of course – but it actually felt like I was in labour, the pain was as extreme as that.

Evans: Gosh it was as bad as that?

Edwards: Yes. In fact I actually got taken into the hospital in the middle of the night by ambulance. My blood pressure had gone up, my heart rate had gone up, I was in such excruciating pain it was like spasms. There was something gynaecological going on, that’s what it felt like. That was at the stage where I was going through the menopause. After that there was all the things like night sweats, and those are quite indistinguishable from the symptoms you would get with the menopause. So you get a lot of sweating, a lot of freezing cold, hot cold kind of thing. Also got hypersensitivity to things, that’s a very big issue, bright lights, strong smells, loud sounds.

Evans: It’s a very strange illness or syndrome, because people can ask you, ‘how does it feel, how do you feel?’ And I’m speaking for myself now, and I’ll just say, ‘well I feel awful, you know’. ‘How do you feel awful?’ ‘just feel awful, I’m aching in every joint in my body, my brain doesn’t function, I get absolutely exhausted’. And then people say, ‘oh yeah I get tired as well’ I say to them, ‘no this isn’t tired, I described it as like being hit by a torpedo, it comes from nowhere’.

How did you get a diagnosis?

Edwards: I had all these symptoms where I was getting the very severe pain and they were putting it down to the IBS, they did lots of different tests for like Crohn’s disease, celiac disease, and it came up that it said normally if you want to get a diagnosis you need to see a consultant, usually a rheumatologist. And he said nothing shows up in the blood you’ve had done with your GP and things like that. And then he said, I’m going to press some points on your body and I want you to tell me how it feels. So he pressed certain points in my shoulders, my neck and various places, and they were really sore, really tender, even with the slightest pressure on them. And he said the fact that these points are really tender, he actually called it pain amplification disorder, because I think at that time a lot of people were quite sceptical about this term fibromyalgia.

He didn’t give me any leaflets, any advice about any medication, any advice about what I should be doing to help myself. He didn’t give me any leaflets about how to cope with it. He said, ‘I’m going to tell you if you don’t go out’ – I remember this because it was quite upsetting at the time – ‘if you don’t go out and get a life you will end up in a wheelchair for the rest of your life’. That was the only information he gave me, so I thought I’m going to have to work out for myself what to do here.

Evans: That’s Diane Edwards.

Well, in 2016 EULAR, that’s the European League Against Rheumatism, an umbrella organisation of national rheumatology societies, including the British Society for Rheumatology, published its revised recommendations for the management of fibromyalgia. Revised that is from the previous study of 2005.

So, a multi-disciplinary group from 12 countries assessed research studies into the management of fibromyalgia – pharmacological and non-pharmacological – and graded them, percentage wise, from weak to strong.

Doctor Gareth Jones, who is a reader in Epidemiology at the University of Aberdeen was part of that study.

Gareth Jones: The previous incarnation of these guidelines was largely expert opinion, there actually wasn’t a big scientific evidence base. So a lot of the guidelines were based on what people thought, albeit experts in the field, or what they thought was appropriate management. Since then there has been quite a lot of randomised trials demonstrating that treatment A is more effective than treatment B, or not.

Evans: It goes through just about everything I’ve ever heard about fibromyalgia, all the medications and things like that, hypnotherapy, massage, meditation, everything. It seems to me, to cut to the quick, that there is only one positive view of what is good for fibromyalgia, and that is exercise.

Jones: Yeah, so exercise was the only treatment that we looked at for which we came up with a recommendation of strong for, as in the recommendation strongly for exercise. That’s not to say there aren’t other therapies for which there are trials that have shown benefit. Actually, there are so many trials, we were looking for reviews of randomised trials, so we were reviewing the literature that has already pulled together a lot of evidence. And so when we came up with a recommendation for being strongly for something we were satisfied that there was enough of a body of evidence demonstrating that this treatment is effective. Where we didn’t recommend strong for, it might have been that there was evidence suggesting it wasn’t effective, or it might have been that there wasn’t evidence. For a number of therapies, especially newer therapies, it’s the same with new drugs, actually it takes a while for that evidence to build up.

Evans: But there’s exercise and there’s exercise. Now I remember when I was diagnosed with fibromyalgia 25 plus years ago, I was told to go and buy a pulse monitor watch that sportsman wear and really max out on exercise, make sure that I really thrashed it, if you like. It didn’t work for me, and others have said exactly the same thing.

Jones: And obviously I can’t comment on precisely the advice that you were given. You’re absolutely right, there’s exercise and there’s exercise. And so what we found is that there is good evidence that patient outcomes in fibromyalgia, and they may be pain, they may be function, they may be whatever, are improved with exercise versus not.

The trials that have looked at exercise, some of them have done aerobic exercise, some of them have looked at strength and conditioning, some of them have looked at exercise on land versus in water, hydrotherapy exercises and so on. And that’s where it gets a little bit more difficult to determine whether there is a benefit or not. When planning a trial of course the expected benefit, or how you might power the trial and determine how many people you need in the trial, is based on what you expect the difference might be. And to say “let’s assume people’s pain scores might improve by two out of ten in the exercise group compared to a non exercise group”. But if you’re comparing one kind of exercise with another kind of exercise, then the improvement is going to be much smaller, and so actually the trials would have to be bigger, they tend not to get done.

So actually there’s very little good evidence comparing different kinds of exercise. So it’s not possible to say it’s strengthening which is beneficial, as opposed to aerobic exercise, or the other way around, because that evidence is just not there.

Evans: I think the danger is with advice like that, I’m not the only person who has had advice like that, I think many people have had advice like that, the only danger is that it could be, and I suspect it might be very beneficial; but exercise as a prescription is not enough. There is cognitive behavioural work that needs to be done to help you get there, you don’t go straight at it, it’s not a therapy in itself.

Jones: I think having the psychological support, where necessary, is absolutely important. It’s not a treatment such as taking a drug, where if you take a tablet you have ingested the chemical that has the beneficial effect. What’s exercise, is it walking, is it running, is it swimming, is it doing it for five hours a day is it for 20 minutes? So the dose of exercise that you can take, or that you can do, is highly variable. And not only variable in terms of what’s possible, but probably also variable between what people require, and indeed what they are able to do.

Evans: That’s doctor Gareth Jones.

Doctor Kathryn Martin, also at the University of Aberdeen, focuses her research around physical activity for people with arthritis and musculoskeletal conditions like fibromyalgia.

Kathryn Martin: Exercise is something that’s structured. And it’s marked by things like what type of exercise you do, what type of movement. Usually it’s around moving large muscles and joints, doing it for a certain amount of time and thinking about the intensity level; so not all activity or lifestyle activity that you do can be considered exercise. And people often find that from wherever they are, whatever their baseline is, they are able to do more or less of a different type of activity or exercise.

Evans: Well you’ve been working on a project called Walk with Ease?

Martin: Yes.

Evans: Explain that to me.

Martin: Walk with Ease is the Arthritis Foundation’s activity programme that was developed specifically for individuals with arthritis. And it is a six week community based walking programme. And when I say it was designed specifically for folks with arthritis and musculoskeletal conditions, it takes into consideration the barriers that individuals often have around fear of movement, fear of pain on exercise. It tends to some of the concerns that people have about reengaging with activity, if they’ve been inactive for a while.

And so individuals can do this either in a group with an instructor who’s been trained in Walk with Ease, and leading the Walk with Ease programme, or they can do it on their own with a guidebook. The guidebook is there for all individuals taking part in walk with ease, but there is that element where you are able to do it on your own, in case you maybe have care giving responsibilities, or if you’re still working, and so if you aren’t able to take part in a group, especially since it’s meant to be three times a week for about an hour or so, so it can be quite a time commitment. But folks really enjoy being part of a group and having that social aspect. So there’s both elements, individual or instructor led.

Evans: Well, I don’t have arthritis, but I do have fibromyalgia, and I’m going to join a Walk with Ease group. What do I need to know, will I start at a sprint, or a crawl?

Martin: You won’t start at a sprint. It depends, I suppose, whether or not you’d like to start at a crawl. But we’ll do a small warm up, getting limbered up, getting the muscles warmed up, so taking just a little bit of a walk, stopping and doing some stretching exercises, cause that’s really important. And that’s not often found in other heath walks or walks. And then once the stretches are done, there’s a set of five that we’ll do, we’ll get into the main bit of the walk. And that’s really to get up to a moderate pace, as well as you can do. But we’ll probably aim for at least 10 to 15 minutes, and if you need to have a slower pace you can hang back, there’s always another person who is willing to walk alongside you. But then once we’ve finished with the main walk we’ll do a little bit of a cool down, and then do some stretches at the end.

Fiona will probably also at the beginning talk a little bit about the goals for the day and she’ll bring along her lecturettes, so just a bit of a conversation about activity – so each of the sessions has a different topic to focus on and get the group thinking about for the day.

Evans: But I won’t be embarrassed if I have to slow down or stop, that’s the important thing.

Martin: No, that’s the important thing, absolutely, that’s part of it. It’s recognising the limits and knowing where you are able to set your goals to for that day, in terms of your intensity and the amount of time that you’re able to walk for.

Evans: Alright, let’s go for it, be gentle with me.

Martin: Absolutely.

Evans: This seems like an appropriate time to remind you that whilst 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 wellbeing. And that of course includes starting a new exercise regime. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.

…

Ok Katherine, we’ve left your sumptuous office in Aberdeen University, just tell us where we are now?

Martin: Right now we’re in the Westburn Outdoor Sports Center, that’s run by Sport Aberdeen. It was a location where we held our physical performance assessments and it was also one of the areas where a walk, for Walk with Ease, actually went out from. So, it’s a nice community centre, there’s a nice size park, it’s a great, beautiful day out. And with us is Fiona Rennie, she was one of the Walk with Ease leaders that we trained to deliver the Walk with Ease walk as part of the research study. She also does health walks as part of volunteering with Sport Aberdeen.

Evans: Fiona, you’re going to put me through my paces today are you?

Fiona Rennie: Yes, I’ll just get started?

Evans: Yup, please do.

Rennie: Ok, so we usually start with a lecturette, so I’d just like to make you aware of making a doable personal walking plan with realistic goals for improved fitness. And this is a very important one – the two hour pain rule. So your pain should not be worse two hours after you exercise than before you started. If it is, cut back. So that’s saying, like today when you go away from here you might have pushed yourself just a little bit, you might get home and you’re fine. But you might still be sore in two hours time. So, next time please come and say to me, or if you’re out for a walk and you do too much, calm down for the next day. It’s a build up rather than ‘I’ve got to do this now’.

Evans: You say two hours for arthritis, two hours for maybe other conditions. For me personally it might be two days later. But as long as I can read those signs, then it should be fine.

Rennie: It’s to do with awareness. So now we go on to exercise dos and don’ts because we will be doing exercises before we start our walk. So do build a programme that includes the three different exercises of flexibility, strengthening and cardiovascular. Cardiovascular is when we are walking. Do walk when you have the least pain and stiffness. Do walk when you are not tired. Do walk when your medicine, if you are talking any, is having its greatest effect. Do always include a warm up and a cool down whenever you walk. Do start at your own ability level, move slowly and gently and progress gradually. Do avoid becoming chilled or overheated when walking, like today we’ve got a brisk cold.

Evans: Brisk?

Rennie: [laughing] Up here in the North-East. Do use heat, cold and other strategies to minimise pain. So when you go home and you are having that pain. Do use aids, this is the most important thing I would say, cause you’re coming to a group you might be embarrassed to use your walking stick or your poles to help, but you normally have them.

So that’s all the dos, but we’ve always got don’ts. Don’t do too much too soon, start slowly and gradually. Don’t hold your breath when doing anything – because that’s when people count to thirty and take a deep breath in. Don’t take extra medicine before walking, unless prescribed by your healthcare provider. Don’t walk so fast so far that you have more pain, and as by now I think you’ll get, two hour pain barrier. And that’s all your exercise dos and don’ts. So the next thing will be we’ll go out and it’ll be like a slow walk, then we’ll have our exercises, then we’ll have our walk, we’ll kind of pace it up a bit, then we’ll slow it down, then we’ll have our exercises. And that’s the programme ahead.

Evans: Well I’m looking forward to it. It’s a lovely day in Aberdeen, ice on the pavement, so we should be a little bit careful of that, shouldn’t we? It’s very cold for my soft, southern body, so we wrap up warm.

Rennie: And the other thing that we do is we chat and have a laugh.

Evans: Chat and have a laugh.

Rennie: Yes, because like we said, it’s fun as well.

Use your surrounding area for the exercises, so as you see we’ve got a bench, if people wanted to do that there.

Martin: So you can do them seated, is that what you’re suggesting? Some of the exercises can be done seated?

Rennie: And a lot of people like going up against a tree. People wonder how we’re outside doing exercises, but it’s to be at the same temperature. If we did it inside you’d be too warm coming out into the cold.

Evans: So we’ve done a short walk, just to acclimatise to the temperature, get our muscles into the cold if you like. [laughter]

Martin: So shall we grab a tree then?

Rennie: Yup, wherever you want to.

…

Evans: On the same subject, of the revised recommendations for the management of fibromyalgia, I’d be very cautious as a patient in reading this, because the medicine that I take it says is not particularly effective, although it does some stuff for me. I’d be very cautious as a patient, for other patients to read through something like this, just in case it skews your mind into something that has been working for a long time.

Jones: I would caution patients about reading it and I’m not saying that they shouldn’t read it, it is not written as a patient facing document, if you like. There are other documents that are written specifically for patients. To say that certain treatments don’t work is difficult. Clearly, in a study where you’re testing a new drug, let’s say, you want to test it against a placebo, you want to test it against existing therapies. And if you’re testing it against an existing therapy, and maybe in that existing therapy 50 per cent of people show improvement, and with your new drug 60 per cent of people show an improvement, then this would be heralded as an enormous success. But you have to remember that there is still 40 per cent of people who are not showing an improvement with the drug.

So a lot of the trials are really just looking at is it better than a placebo, is it better than what’s already there. But of course if you give the drug to 100 people and 60 are responding, there is still 40 who are having inadequate pain relief, and will need something else. Even drugs and therapies that we say are effective, there are still people for whom they won’t work. And there will be therapies that we say actually the evidence isn’t great that they are effective, but there will be a sub group of them for whom it does work.

…

Evans: We’re using the tree, which could be anything really, just to support us, and we have one leg in front of the other, and we’re just gradually stretching what feels like to me my calf and my upper thigh.

Rennie: As long as it’s not just your calf, that’s good it’s your upper thigh.

Evans: See I’m falling into the trap again, I’m really pushing hard to get it to, almost to hurt. I shouldn’t do it.

Martin: Do you find sometimes Fiona people get impatient with waiting their 30 seconds on each side?

Fiona: No, they’re impatient if they don’t feel that stretch.

Evans: Ahhh.

…

Maybe I was a little bit negative about patients reading this. The plus side is that many patients, myself included, with something like this, is many people have expressed surprise to me that there is so much work going on into fibromyalgia. Somebody just this morning said, ‘I didn’t know anybody was working on it, it’s like we’re a condition in a vacuum’. There is a lot of work going on with it.

Jones: There is an enormous amount of work, internationally. It’s a sad fact that some conditions will, I don’t want to say become ‘in vogue’, that sounds terribly patronising, but money that charities, research, councils, that fund this work have finite pots of money, and this year money will be going towards x, next year money will be going a bit more towards y. But across the board there’s quite a lot of work going into chronic pain and fibromyalgia for a number of funding bodies.

…

Evans: So we’re at a decent pace for me now, but we’re not ambling. Watch the ice. Too much time talking, not looking where I’m going.

Martin; It is an important feature, thinking about where are you going to walk, what are the conditions like. Especially if you were to fall, walk with these programmes and walk independently, so when you’re with a group you have other people around, but you always want to make sure that you’re safe and you understand the conditions of the pavement and if there’s any trip hazards and things in your local area, wherever you like to walk.

…

Evans: It’s not the responsibility of a researcher or a healthcare professional to manage somebody’s pain for life. People with pain have to take ownership of something at that point, and that’s the important thing isn’t it, that they have to take ownership of it?

Martin: Absolutely. I think that a lot of individuals want to be able to self-manage their condition, and have those skills to be able to do so. We operate in a world where there are a lot of different medicines or things that can be given to cure things instantly. But being active even without any condition like fibromyalgia is important to be able to maintain good physical health. So that is one element that all individuals can take ownership of and try and increase their activity over time and maintain it as well. So yes, I think that that’s an important aspect of self-management of a long term condition.

Evans: Kathryn Martin, of the University of Aberdeen. She’s the researcher behind the Walk with Ease programme in the UK, which is funded by the Arthritis Foundation and Arthritis Research UK, now going under its new name Versus Arthritis.

You can find out more about how to Walk with Ease, be it in a group or by yourself, from the website arthritis.org. Just put Walk with Ease into the search box at the top of the page, all the resources are there.

And don’t forget that you can download all editions of Airing Pain, including videos and resources on self-management, from Pain Concern’s website, which is painconcern.org.uk.

Now, on that subject of self-management, you’ll remember that I spoke to Diane Edwards at the start of this edition of Airing Pain. I’ll just remind you of what the doctor who diagnosed her fibromyalgia told her.

Edwards: He said, ‘I’m going to tell you if you don’t go out’ – I remember this because it was quite upsetting at the time – ‘if you don’t go out and get a life you will end up in a wheelchair for the rest of your life’.

Evans: And her response.

Edwards: So I thought ‘I’m going to have to work out for myself what to do here’. So I went back to my GP and she said ‘we’re going to try and work out how we can help you’. So she started me on the amitriptyline, but I just felt like a zombie so I decided, no I’m going to find another way to get round this.

We then tried hydrotherapy, and that was lovely, it was really nice, nice warm water in the pool’ and we did gentle exercises, I would say, in the pool. And then I thought, I always used to go swimming a lot when I was younger, I really enjoyed swimming, so I thought ‘I’m going to try and keep this up’. So I started going swimming just once a week after the hydrotherapy sessions had finished. The water is really good because it supports your body, so you’re not putting a lot of pressure on it. And I now going swimming once a week. And I thought I’ll build up, I did a couple of lengths and went up to five lengths after a little while, up to ten lengths, and I can swim up to 40 lengths now in one session. Takes me about 35 minutes.

Evans: You’ve built up to that 40 lengths?

Edwards: Oh yeah, over the years. From the hydrotherapy that I had to start with I guess. And then I thought, right I’m going to explore other things that might help. First of all, we went and got a dog. That gave me the encouragement to go out for short walks. Not hikes up mountains or anything like that. Just like round the block kind of walks, at my own speed. At one stage I was doing three walks a day, but I’m down to two now, cause the dog’s got quite old and she doesn’t like walking as much anymore.

Evans: Your dog can’t keep up with you.

Edwards: [laughing] Not quite. And then the other thing I explored was yoga, because I know yoga is very good for gentle stretching your muscles, but it’s not intense like running on a treadmill or lifting weights or anything like that. It’s called Hatha Yoga, which I think is the gentlest form of yoga.

Evans: Ah, ok yeah.

Edwards: It’s not these things where you tie yourself up in knots, it’s very gentle. Maybe I’ll do five or ten minutes at home every evening as well. I force myself, maybe if the televisions on I’ll just think ‘I can do these things’. I can still touch my toes and my daughter can’t do that. [laughing]

Evans: I didn’t know I had toes.

Edwards: So, yoga’s been really good because it keeps you very flexible, very supple. Even though some evenings I might think ‘I don’t want to do this’. I don’t force myself, but I think, ‘this is good for me, I’ll do this, this is good’. So it is about managing your time doing all these things. You wouldn’t go on a three mile hike, you wouldn’t go and run 20 miles or anything like that. So I don’t pretend that I’m particularly good at anything, but I just maintain a balance that my body can manage at this particular stage in my life.

Evans: So you’ve learnt how to self-manage your condition?

Edwards: Oh, definitely, yes. And I also think it’s not just the physical exercise, it’s also mental exercise as well. I think you’ve got to keep your mind quite active. So I like to do things like sudoku puzzles, crosswords, there’s an online site where you can do courses which are set up by different universities. And you can enrol on them. Some of them are four week courses, some are six week courses. You don’t get any qualifications at the end of them, but they are really interesting, and you can interact with your fellow learners. So that keeps my mind quite active too.

Evans: Exercise for the mind and body?

Edwards: Yeah.

Evans: For more information about fibromyalgia I suggest you go to the Fibromyalgia Action UK website, that’s at fmauk.org.

So, to Fiona Rennie, my personal Walk with Ease leader.

…

Rennie: Back here just to see how you got on, how you’re feeling just now before you go. Is there pain just now?

Evans: No more pain than I had when I started.

Rennie: That’s good to hear.

Evans: And I’m very surprised, because the walk I normally try and do is more physical than this, and I found this better today, because I’ve been held back.

Rennie: Yeah. What will you be doing before the next time I see you, so I don’t want you to just do the walk today and then the next time it’s the walk then, what are you doing in between?

Evans: Well, the one thing I’ve learnt today is the stretching, the warming up and cooling down, the stretches are really worthwhile. And they are the things that really go, that you would ignore completely, come on let’s just get at it.

Rennie: Just think, professional football players, they warm up, they warm down.

Martin: They do their stretches.

Rennie: Yup, so let’s be professional, we’re walking.

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/.

How men and women experience pain, arming yourself with the right information, and not being embarrassed about your condition

To listen to this programme, click here.

Prefer a PDF?Download

This edition’s been part funded by the Women’s Fund for Scotland.

Do women and men experience pain differently, or is it only our attitudes towards pain that differ? In this edition of Airing Pain, Paul speaks to healthcare professionals about their findings with the literature surrounding chronic pain and the changing outlooks when it comes to seeking help.

Deputy Director of the Bath Centre for Pain Research, Professor Ed Keogh, speaks about his review of men’s health literature in the context of chronic pain, and found that women are more likely to report pain in more body regions in their lifetime compared to men. He considers whether this is due to biological or social/emotional reasons, but emphasises that the variation within males and females is much greater than the variation between the sexes.

Can the gender roles society pushes on us affect how we deal with our pain? Senior clinical psychologist of the National Specialist Pain Service in Bath Dr Gauntlett-Gilbert talks to Paul about how the societal expectations of how we handle pain can feed into depression and guilt.

Specialist physiotherapist at UCL Hospitals’ Pain Management Centre Katrine Petersen discusses the lack of literature on men’s pain, especially pelvic pain, as well as her experiences in using physiotherapeutic strategies in the context of chronic pain syndromes.

Issues covered in this programme include: CBT: cognitive behavioural therapy, chronic prostatitis, difference, urogenital pain, pelvic pain, chronic primary pain, depression, men and women, men’s pain, menstruation, prostate cancer, prostatitis, relationships, research, sex difference, social factors, testicular pain and women’s pain.

I’m Paul Evans. And this edition has been funded by the Women’s Fund of Scotland.

Jeremy Gauntlett-Gilbert: Men will very often speak of their loss of a role in the family, the fact that they can’t provide anymore, they can’t be a breadwinner anymore. That they can’t go out to work or provide that kind of leadership or physical help around the house that they hope to.

Katrine Petersen: If you consider how women have accessed healthcare for pelvic issues such as menstruation, first sexual encounter, contraception, pregnancy, smear tests. Women are just used to talking about the abdominal pelvic area.

Evans: Do men and women experience pain differently? In terms of understanding, what’s known about men’s pain falls short of what we understand about women’s pain? In 2015, psychologist Professor Ed Keogh, who is the deputy director of the Bath Centre for Pain Research at the University of Bath, completed a selective review of men’s health literature to consider them within the context of men’s pain. Under the heading ‘Men, Masculinity and Pain’, its purpose in taking a men’s health approach to pain was to view existing evidence in a different way, and to identify potential gaps in our understanding, not just of men’s pain, but of women’s pain too.

Ed Keogh: There are sex and gender differences, for example we know that men are different in terms of the amount of pain they experience and report. Here we know that, for example women tend to report more pain, in more body regions over their lifetime in comparison to men. So we know that there are these differences, and we are quite interested in some of the reasons why there are differences.

Evans: So you’re talking about the occurrence of pain, rather than the severity of pain?

Keogh: Well it’s all types of pain, so it’s actually pain conditions. So, if you look at some pain conditions and look at men and women, how represented are they in the clinic, we know for some conditions women are coming in with more pain, so headache and lower back pain, those sorts of pains. We typically find numbers are higher in women in comparison to men in the clinic. In addition to that we also know for example, in laboratory pain induction type environments, so inducing pain, there are differences in the amount of pain reported. The pain thresholds, the pain tolerance levels tend to be different in men and women. I think the key question is why are there differences?

Evans: Well first of all, we men, as no doubt you’ll say, we feel pain more than women.

Keogh: Well the evidence is actually contrary to that. In fact if you look at the amount of pain that’s being reported then certainly women are reporting more pain in comparison to men. Now that’s not to say that men aren’t experiencing pain. Men are in pain, they are suffering and we certainly do need to do things about this.

Evans: So what’s going on there then?

Keogh: I think this comes back to the explanations around why there might be these sex and gender differences in pain. So we know there are differences, why are there differences? Some of the explanations are very biological, so we know there may be sex hormones may be involved in mediating some of the differences.

But as we also know, sex and gender, there are more biological factors, but also social and emotional factors, and psychosocial factors are also important. So we are quite interested in the way these psychological and social factors have an impact on, both the experience and also the reporting of pain, and we think that might be particularly important for both men and women.

Evans: I would take a stab at it and say we don’t like going to the doctors, we are not as open about our own bodies as women are?

Keogh: Yes, the whole men’s health agenda around how men are not going to the doctors, not explaining to others, things about their pain, about their health conditions. We’ve sort of moved into the pain area and asked, if there are limitations in how well men are reporting health experiences, does that then translate into pain clinics as well? Are men not very good at reporting pain? Men’s health literature is beginning to highlight that there are these differences, and there are possible explanations around why men may be under-reporting health conditions. When we start looking at pain, relatively little research has actually looked at men and the way in which they report pain itself.

Evans: Could something to do with it be that, if I sit in the waiting room of my GP practice I’m bombarded with posters about women in pain, there are only two posters that I can think of about male only pain: testicular cancer, and I can’t even think of the second one?

Keogh: Yeah I think there’s a lot of expectations around pain and who experiences pain. In fact women are much better at going to their GPs and talking about health conditions including pain. Pain is much more regular, of course for a number of women, so menstrual cycle related pain, for example, is very common. Of course, women then are therefore more able to discuss this more regularly. When it comes to males and male pain, it’s not as normalised if that makes sense. And so therefore there maybe inhibition around discussing these sort of experiences.

Evans: The interesting thing about what you said earlier, is the word masculinity, which is – well, masculinity’s being a man.

Keogh: Exactly, this is what’s interesting, we’re not talking about sex differences, differences between men and women. We know there are differences between men and women. But the variation that occurs within males, and within females, is much greater than the variation between the sexes. So we need to understand this, and one of the explanations could be something along the lines of gender. Which is the social norms, the conceptualisation of what it means to be masculine, what it means to be feminine. We think some of these are very important in terms of how people discuss, and how they behave in front of others when it comes to pain.

Evans: And I said tongue in cheek, that we feel pain worse than women do, well of course, that was tongue in cheek. But there is the expression man-flu, and the general feeling that a man will stay in bed, it will be flu and not a cold. Do we confine our pain to the people we know?

Keogh: There’s a couple of things embedded within that. I’ll start off with how media, society, represents the expression of pain. I think this is a very good example of the way in which the expression of emotions, the expression of pain can actually be inhibited in some ways. So, actually, if you think about the way in which we develop as children, whether or not crying as a boy is punished in some ways, through saying “don’t act like that”, etc. Whether that’s being played out in the way in which men actually express their emotions, express painful conditions. That might be reflected there.

Again, from the men’s health literature, what we actually know is that in terms of social support there do seem to be differences, especially as we age. So the men’s health literature certainly indicates that later on in life, in terms of the support networks that are around, women have very good social support networks outside of the home. Whereas men on the other hand tend to restrict it more within the home. So the problem is, if you lose your partner then for women there is actually a social support network around them, but for men it’s not there as much. So we have to think about ways in which we can get men that sort of help. One of the examples that is being used and developed in a number of countries has been the men’s shed movement, which is a way of getting men together, through activities, but actually that could be a very good medium by which you could actually start talking about other sorts of issues, such as health related issues, of which we can of course include pain.

Again, in terms of men’s health literature, where you’ll see lots of emphasis now on recognising how there might be differences in how you might approach men and women, especially around health conditions and getting men to actually go to their GPs to talk to people about their concerns, especially around pain and other health conditions. Talk about it, don’t leave it to the last moment, which of course can sometimes happen. So I think by making it much more acceptable to talk about emotions and feelings, and the way in which pain affects you in going to be good for men and women.

Evans: That’s Professor Ed Keogh, Deputy Director of The Bath Centre for Pain Research at the University of Bath.

Now, he talked about pain being an expression of hurt and vulnerability, and that maybe men are less likely than women to come to terms with those feelings. But what about other self-conscious emotions, like shame, embarrassment or humiliation? Jeremy Gauntlett-Gilbert is a Senior Clinical Psychologist at The National Specialist Pain Service in Bath.

Jeremy Gauntlett-Gilbert: Historically in chronic pain research and practice, people have always been interested in understanding things like depression in pain, things like anxiety. But it also really seems true that people with chronic pain live with a condition that is poorly understood, they don’t always get nice, encouraging responses from other people. And therefore they’re very often in a position where they’re constantly feeling embarrassed, self-conscious. “What’s wrong with you?” “I’ve got a bad back”. It’s a rubbish answer. And so we just became interested in that from our clinical experience, and then wanted to do some research on it.

Evans: From my own experience, I have chronic pain, I have fibromyalgia, sometimes you’re embarrassed to smile in company, just in case people think you’re better, or they judge you.

Gauntlett-Gilbert: I think it’s true isn’t it, because all of these conditions, they fluctuate in their severity, so people have better days and worse days. And one of the risks of that is, people see somebody on a good day, and they say, “What’s wrong with you then, you’re obviously fine”. And so it’s that kind of incomprehension which does make people very nervous. They’re just not well understood conditions, they’re not seen as legitimate. Fibromyalgia being a case in point, people don’t take it seriously, it’s not leukaemia.

Evans: You have to look ill to be ill.

Gauntlett-Gilbert: Yes, this is true. One of the other things that happens around trying not to feel embarrassed, or trying not to feel ashamed, is people trying desperately not to look ill. Lots of people spent a lot of their time trying to put on a good face, or only going out when they feel fine. And it’s the flip side of what you were just saying, the embarrassment drives people to either try and make damn sure that people understand how ill they are, or because they feel so misunderstood they put a terribly brave face on things and only go out when they feel well.

Evans: Embarrassment, I’ve never felt embarrassed about my condition. But I can see what you’re saying, that if I don’t look ill enough then I will be judged as a shirker, a malingerer.

Gauntlett-Gilbert: I think it’s a real problem for people with pain, cos you’re damned if you do and damned if you don’t. People might well see you looking in pain, looking visibly uncomfortable and judge you as hamming it up. Or people see you on a good day, or when you’re trying to put a good face on things, and say “Well, what’s wrong with him?”

Evans: And I think for people who are in work with chronic pain, there is the impression if you take sick leave you are sick, but when you go back to work you are better.

Gauntlett-Gilbert: Completely, yeah, for some reason we’ve got this model, which probably does work for the flu, that you’re either sick or you’re well. Which just doesn’t apply to the kind of conditions you see in chronic pain. And it’s a real shame because very often people are almost punished for getting back to work, people who struggle back to work, half time, do a graded return. Instead of being treated with respect for their effort, they are almost hurried along, “Why can’t you improve it quicker?”

Evans: “If you can’t do all the work then why are you here?”

Gauntlett-Gilbert: [laughing] That has a ring of authentic and painful truth about it, yes. That’s one of those things, and I think that people end up being implicitly punished and then employers say some things which can’t be legitimate or legal sometimes about health and safety, not sure we can have you around here cos you don’t look terribly safe on that chair. And the upshot is, although probably nobody is trying to do the bad thing, is that people with chronic pain end up almost getting a little bit punished for their very brave attempts to go back as much as they can and do as much as they can, which isn’t perfect.

Evans: The flip side of somebody in that situation is that they punish themselves, because they don’t want the employers to manage their condition, they want to keep their employers at arm’s length, if you like, because “I can manage this myself, don’t get involved. Because if you get involved you’re going to cut my work down to half, and somebody else will look at me and say, what’s he doing here”. So it’s not just employers.

Gauntlett-Gilbet: People can, as you say, keep employers at arm’s length because they are trying to self-manage, though possibly trying to self-manage in a worried way. Like you say, worried what the employer will do. But also a lot of people with chronic pain are just, before they ever had pain they were people with very high standards, people who want to do a good job, they’re people who dislike the idea of half measures. And these are temperamental things, human beings were human beings before they got pain. And a lot of people with chronic pain have really strong values for themselves, and strong values for their working lives, and actually genuinely hate having to do what they feel is a half effort because of pain. So either because of fear of what their employer will do, or because of their own standards for themselves, they can end up really flogging themselves I think.

Evans: Is there a gender difference for people with chronic pain? Do men act differently from women?

Gauntlett-Gilbert: I think it differs in form. Men will very often speak, and it’s a little stereotypical, but a little true, of their loss of a role in the family, the fact that they can’t provide anymore, they can’t be a breadwinner anymore. That they can’t go out to work, or provide that kind of leadership, or physical help around the house that they hope to. In many ways that’s not a million miles from women, who are used to having, again stereotypically, these are stereotypes, more of a caring role, who value their ability to look after other people, to be a mother, to help other people, and who have strong values around nurturing other people, they feel pretty ghastly too. So I think the form is different, but I don’t know if underneath it’s all that different.

Evans: Perhaps men and women seek help in different ways?

Gauntlett-Gilbert: I think so, I mean it’s a legendary issue in the broader literature, of men’s terrible healthcare seeking behaviour, and tendency to avoid things.

Evans: The shame, and the guilt, and the anxiety, for someone who has chronic pain, depression and guilt, they all feed into the chronic pain and the chronic pain feeds into all that, it’s that cycle of pain, isn’t it? And you need to break that cycle. So which comes first do you say?

Gauntlett-Gilbert: Another question is which can you change easiest? None of these things are easy to change, but if a person has got chronic pain then the chances are they have a pretty nasty, unpredictable set of symptoms which comes and goes, and there’s not a right lot you can do about it. Perhaps it’s just my bent as a psychologist, it always seems to me that perhaps you could get in there with the emotions, using some psychological techniques that we use. It’s not easy because people were able to feel shame, or were able to feel low long before they had chronic pain, these are things which everybody feels a little bit of their whole lives. So I don’t think you can ever wave a magic wand and get people to a point where they never feel shame or guilt, and I’m not sure it would be a good idea if you did. I rather think that’s what psychopaths are like, so shame and guilt is probably not necessarily a bad thing. But, yes we’re certainly experimenting with using fairly established, nothing radical, but established psychological techniques and current psychological therapies to see if we could target those things directly.

Evans: So what are those therapies?

Gauntlett-Gilbert: You’ve got to ask yourself, if people are living with an obviously visible condition, somebody who is using a stick, has chronic pain, and they’re living in a society which isn’t always kind to people with disabilities, I certainly wouldn’t go down the line of thinking we could get people to some lovely positive thinking world, in which they never feel embarrassed. I think that’s probably unrealistic. Instead we tend to use more acceptance based approaches, which kind of acknowledges that these unpleasant emotions are there, and they will be there. And until there’s a revolution and everybody becomes nice to people with disabilities, and I don’t know when that’s coming, until that happens then people may have to find ways to carry their embarrassment with them, whilst they get on with the stuff they care about. You can tell there is not a should in that, I don’t think people should put up with their embarrassment, but very often these are the bargains which are in front of people with long term conditions. Either do it and risk feeling embarrassed, or don’t risk feeling embarrassed but never do it.

So we’re looking at acceptance based, and mindfulness based techniques in the psychological therapies that might, if a person chooses it, help them be able to be a little bit more embarrassed and carry on doing what they care about as well. It’s not an easy sell, it would be a great deal easier to sell the lovely positive idea that you could walk around your life free from shame, but I’m not sure that’s always realistic. And so that’s one of the ways we tend to go at things.

Evan: The acceptance side of things I guess is accepting you have a condition, and that it’s something you have to live with, but the condition isn’t the driver of your life?

Gauntlett-Gilbert: I think that’s right. I think there’s accepting that you have the condition. And the other thing, when you’re talking about what drives your life, and what makes you do things, and what stops you doing things, is that if you can accept that you might feel a bit rotten while you are doing this, you might blush, you might feel like a bit of an idiot, people aren’t really taking you seriously, but that is something you aren’t happy with but are willing to take as the price of doing something that you care about. Then that’s the kind of acceptance that we’re talking about. It’s a tricky business, but it’s an honest, psychological approach. And also one that makes it clear that difficult emotions aren’t dangerous themselves, they’re just uncomfortable. And if we choose to then sometimes we can make the choice to do more of our lives and have that discomfort.

Evans: Jeremy Gauntlett-Gilbert senior clinical psychologist at the National Specialist Pain Service in Bath.

We’re talking about gender differences in the experience of chronic pain, and we’ve talked about emotional or psychological differences between the sexes, but physically and biologically – and this is not new science – men and women are different. We also differ in our willingness to discuss or own up to problems, particularly if those problems are leading to pain in the pelvic region.

Katrine Petersen is specialist physiotherapist at the University College London Hospital’s pain management centre. So what do we men suffer from that women don’t?

Katrine Petersen: That’s a really good question, because there’s so little literature on it. We’ve got some data ourselves on the service we run for chronic abdominal pelvic pain. That’s a definition and term that we have developed because it fits the population that we see, but when you actually look at the literature it’s very difficult to define exactly, but we have a list of syndromes, pain syndromes, based around the pelvic area and the abdominal area that we see.

So typically male pelvic pain will be described in the literature often as chronic prostatitis, so men will get pain in that area affecting potentially their bladder and urinary frequency and sexual function. And often they will go to urology and have their prostates checked.

Evans: There’s a gender difference here isn’t there? Men don’t talk about their private parts, or anything below their navel at all.

Petersen: Absolutely. So it used to be quite difficult to get men coming forward, but I recently looked at our data on patients attending our chronic abdominal pelvic pain clinics and it turns out that we nearly have a third of patients who are men. So they are starting to come forward. One of the reasons why men don’t come forward is if you consider how women have accessed healthcare for pelvic issues, such as menstruation, first sexual encounter, contraception, pregnancy, smear tests, women are just used to talking about the abdominal pelvic area, whereas men really have no particular reason to go unless they have a problem.

Chronic prostatisis or chronic prostate pain syndrome is one of the typical syndromes that we see, but we also penile pain, testicular pain, non-specific pelvic pain and rectal pain, lots of different conditions all affect that particular area.

Evans: Now prostate is something that possibly many men will recognise, through tests for prostate cancer and things like that.

Petersen: Exactly. So typically patients will go to urology for that particular concern of prostate cancer, because that’s something that gets talked about. What doesn’t get talked about is when patients have pain from an unidentifiable cause, or non-pathology, non-bacterial symptoms that they are getting that very much look like an infection, for example.

Evans: So who do you see?

Petersen: So that’s also a very good question. I have men come into my clinic with very specific pain such as testicular pain, penile pain, and I have had patients come through the door looking at me, saying “I have no idea what you could possibly do for me”. Because in the traditional sense physiotherapy would be about working from a musculoskeletal model of exercise and potentially some manual therapy to stretch and relieve muscles, whereas I much more come from a chronic pain model. So once we have excluded any bacterial infection, anything cancerous, any form of pathology, we’re now working with a chronic pain model. So I use the same strategies that I would use for any other pain condition, I just have to include things like urinary frequency and urgency, bowel movement and sexual function, but again using the same strategies as I would do for any other pain condition as a pain management physiotherapist.

Evans: So as a physio, what do you do?

Petersen: Good question again [laughter], because once it comes to pain management people get a bit more confused. So we are trained in cognitive behavioural therapy, most of us who work in pain management. Because the traditional medical model where you look at the end organ and trying to fix something doesn’t tend to work. So we need to look at a much more complex model in terms of chronic pain, first of all working out why the patient is here to see us, and often it’s because they have some real, good questions about why am I pain. And they have some good questions about what can I do, is it ok for me to exercise, is it ok for me to bend, am I going to cause any further damage. And I think physiotherapists are very well placed because they’ve got the credibility of assessing risk in terms of movement and damage to tissues versus what can you get back to in terms of activity.

So, a lot of what I do is talking about how does pain work in your body, why is it ok for you to have sexual intercourse, why is it ok to let your bladder fill even though it’s painful, why is it ok for you to get on with your life basically.

Evans: It seems like a reassurance thing, rather than treatment, perhaps the treatment is the reassurance?

Petersen: Well, absolutely. So the newest research that’s coming out in terms of what you might term as reassurance, what we might call explained pain, or helping the patient to reconceptualise pain as not being due to damage or a pathology or a bacteria, but actually due to a dysfunction in the nervous system. That can really help patients to shift the way they live their life, or improve the quality of their life. But the newest research also show that it probably has a real impact on neuroplasticity, so we can potentially actually change the nervous system by providing those explanations and getting the patient thinking differently about their pain.

Evans: Now neuroplasticity, that’s a fancy term for rewiring the brain?

Peterson: Rewiring the whole nervous system. So we tend to not just talk about the brain, but the brain’s influence on the spinal cord, and on the peripheral nervous system, so the hypersensitivity in the peripheral receptors is important. So we shouldn’t just be talking about the brain, we should also be talking about the connection between the brain and the painful structure and all the connections that could be affected by neuroplasticity

Evans: So as a man, as in many men, if I had enough courage to come to you, a woman as well, about problems down below and you started on at me and said, “This is all in the mind, this is all in the head” – I mean how do you bridge that gap?

Petersen: It very much depends on the patient and what knowledge and beliefs they already have. By the time they come to see me they’ve already seen one of our pain consultants, who will have introduced them to the concept of chronic pain. Often they will have seen one of our pain nurses, talking about medication, they will also have introduced them to the concept of chronic pain. They may also have attended what we call an information session for people with chronic abdominal pelvic pain, which is this unique opportunity for men to be in a forum with other men with similar problems. And again we talk about chronic pain mechanisms, practical strategies to manage pain long term. And that really means that by the time they come to see me I can sit them down individually and ask them, what do you think of that model, does that fit with your symptoms, does that fit with what you’ve been told, is there anything we need to reconceptualise so to speak, or help you understand? Of course some patients will say “This is not for me, I’m still looking for a medical solution”.

Evans: I know very few men who would admit to having pelvic pain.

Petersen: I think you’re absolutely right and hence why it’s so important to air it today for example, but also get the information out there, that there are services that can help, there are a large proportion of men out there with chronic pelvic pain and abdominal pain, and it can be treated in the same way as any other chronic pain condition. And it should be recognised, and hopefully if we can validate it and normalise it for men, they’re much more likely to come forward and talk about it.

Evans: What advice would you give to men who have pain who are perhaps too shy to talk about it?

Petersen: Well, one of the things that Doctor Williams, one of our research psychologists, did was look at what’s available on the internet. So my first advice is don’t go on the internet, because unfortunately there is very little out there and the information is not good, and not really in line with current practice.

In the study that Williams did she also asked men, after they’d had consultations, what were their main concerns. And I was interested to hear that men weren’t necessarily overly concerned about a sinister disease such as cancer, they were actually just more concerned about a proper explanation. And that does require in the first instance an examination and ruling out any sinister disease. But then it does require probably a pain specialist to enable patients to fully understand the mechanisms, because the last thing we want is going straight from, “You haven’t got cancer, it’s all in your head”, that’s not helpful.

I also have to say that lots of GPs will not know what to do with pelvic pain. They wouldn’t know where to send them. But there is a pelvic pain network, which is a charity, which I would recommend people look at as well, because that will list pelvic pain services that you can say to your GP, I know there’s a pelvic pain service here, please could I at least have a chance of being assessed there and see what’s going on.

Evans: So being forearmed with a little bit of good information to help your GP help you is a good idea?

Petersen: Yes, most certainly. The GP will be mainly concerned with ruling out any serious underlying pathology or disease, after that it is hard for GPs to know exactly what to do because these services for chronic male pelvic pain are few and far between. But there are services out there that will see men and support them with what is essentially a very difficult condition.

Evans: Katrine Peterson, specialist physiotherapist at University College London Hospital’s pain management centre.

I’ll just remind you that whilst 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 wellbeing. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all editions of Airing Pain from Pain Concern’s website, which is painconcern.org.uk. For Pain Concern’s YouTube channel, just put Pain Concern and YouTube into your search engine, and the same applies to Facebook.

Now at the start of the programme we heard Professor Ed Keogh talking about gender differences in the experience of chronic pain, and so to end this edition of Airing Pain how relevant is this study of men, masculinity and pain to women?

Keogh: When you start thinking about gender and you start talking about masculinity and femininity, well actually these are very fluid terms. They apply equally to both men and women, ok quite clearly when we think about men we’ll be thinking about masculinity, but these ways of thinking, the beliefs we have, the norms we have, they’re relevant to both men and women. So I think by looking at the men’s health literature this really does apply to women’s pain as well as men’s pain. There’s a lot we can learn here that will hopefully help both men and women who are in pain.

Contributors:

Dr Ed Keogh, Deputy Director of Bath Centre for Pain Research, Bath University
Katrine Petersen, Specialist Physiotherapist at University College London Hospital’s Pain Management Centre
Dr Jeremy Gauntlett-Gibert, Senior Clinical Psychologist of the National Specialist Pain Service in Bath.

More information:

Pelvic Pain Support Network: pelvicpain.org.uk/.

Cookie	Duration	Description
__cfduid	1 month	The cookie is used by cdn services like CloudFare to identify individual clients behind a shared IP address and apply security settings on a per-client basis. It does not correspond to any user ID in the web application and does not store any personally identifiable information.
_GRECAPTCHA	5 months 27 days	This cookie is set by Google. In addition to certain standard Google cookies, reCAPTCHA sets a necessary cookie (_GRECAPTCHA) when executed for the purpose of providing its risk analysis.
cookielawinfo-checbox-analytics	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional	11 months	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-advertisement	1 year	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Advertisement".
cookielawinfo-checkbox-necessary	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy	11 months	The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.

Cookie	Duration	Description
_ga	2 years	This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_gid	1 day	This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the website is doing. The data collected including the number visitors, the source where they have come from, and the pages visted in an anonymous form.
vuid	2 years	This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Cookie	Duration	Description
IDE	1 year 24 days	Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
NID	6 months	This cookie is used to a profile based on user's interest and display personalized ads to the users.
test_cookie	15 minutes	This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.

Cookie	Duration	Description
_gat_gtag_UA_32255482_2	1 minute	No description
CONSENT	16 years 8 months 9 days 15 hours 12 minutes	No description
huBv		No description

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

In pain? Don’t understand what’s happening?

Fundraise for Pain Concern