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Inside issue 76: What do we mean when we talk about pain?

In this edition of Pain Matters, we have invited the members of the Flippin’ Pain™ campaign to guest-edit a pain neuroscience education special, to aid us with understanding pain. A public health campaign delivered by Connect Health, Flippin’ Pain aims to improve health literacy around persistent pain, building on the work done by world-renowned pain scientist and science educator Professor Lorimer Moseley.

As Professor Cormac Ryan says, ‘for over half a century, much of what scientists have learned about pain has remained hidden away in academic journals gathering dust’, unobtainable to the people who need it most: the people who live with pain every day. This edition of Pain Matters, along with the Flippin’ Pain campaign, aims to change this, one step at a time.


This issue of Pain Matters was guest edited by the Flippin’ Pain™ campaign, a public health campaigned delivered by Connect Health. 


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Managing neuropathic pain related to diabetes, and how to adapt diet to treat the disease

To listen to the programme, please click here.

This edition of Airing Pain has been supported by a grant from The Champ Trust and Foundation Scotland.

According to the most recent Scottish Diabetes Survey in 2018, there are an estimated 304,000 people living with a diagnosis of diabetes in Scotland, around 5% of the population. A long-term effect of diabetes can be the development of diabetic neuropathy. This edition of Airing Pain focuses on neuropathic pain in people with diabetes, and how the X-PERT diabetes courses helps people to deal with the complications that arise when living with diabetes.

First up, Paul Evans speaks to David Bennett, Professor of Neurology at the University of Oxford, who outlines the differences between type 1 and type 2 diabetes and how the initial treatment plan differs between the types. Professor Bennett then goes on to describe how neuropathy develops in people living with diabetes and how neuropathic pain manifests.

Paul then talks with Steve Sims, who lives with diabetic neuropathy as a result of type 2 diabetes. Paul and Steve discuss how they have adjusted their diets to deal with type 2 diabetes and how the X-PERT diabetes course has helped them to adjust to living with diabetes.

Issues covered in this programme include: Diabetes, the differences between type one and type two diabetes, diabetic neuropathy, diabetic retinopathy, nutrition, diet, insulin levels, glycemic control, risk factors of diabetes, peripheral vascular disease, foot pain, burning pain, gabapentinoids, and support groups.


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 those who care for us. I’m Paul Evans. And this edition of Airing Pain has been funded by a grant from the Champ Trust and Foundation Scotland.

2020 has been designated the Global Year for the Prevention of Pain by the International Association for the Study of Pain. Their campaign is focusing on protecting against the onset of pain, preventing pain from becoming chronic or recurring, and reducing the long-term consequences of pain. Well, in this edition of Airing Pain, we’ll be looking at all three of those tiers, through one condition that we’re all, young and old, susceptible to getting: diabetes.

Dave Bennett: There is a kind of paradox, and patients of mine ask me, ‘Doctor, I don’t understand. My feet are numb. So I touched them and I can’t feel anything, but they are continuously painful’.

Evans: And regardless of what causes your chronic pain, we look at the benefits of sharing experience with like-minded people

Steve Sims: Particularly if you’re newly diagnosed or you’ve got a problem which you’ve not had before. The chances are when you come into the group, somebody will have experience of it.

Evans: The Scottish Diabetes Survey in 2018 estimated that there were over 304,000 people with a diagnosis of diabetes in Scotland. That’s over 5% of the population. Between 10 and 15% of those have type one diabetes, with type two accounting for the remainder. Chronic complications arising from diabetes are numerous, but include eyesight problems, kidney function, nerve damage or neuropathy, and more. But before we get to that – the two types of diabetes, type one and type two, why the distinction? Professor Dave Bennett is Professor of Neurology at the University of Oxford. He’s also Consultant in Neurology at Oxford University Hospitals Foundation Trust.

Bennett: Type one diabetes usually is a type of diabetes that comes on in children or young adults. It’s probably triggered by the immune system, and it’s direct damage to the pancreas, which is the part of the body that produces insulin, so that you get virtually no insulin being produced. And the issue there is that people with type one diabetes, they really need to be treated with insulin, certainly that’s key to their survival, and they would get very high blood glucoses without insulin.

Type two diabetes, not exclusively, but it tends to have a later age of onset, the underlying basis of the disease is different. It’s probably a combination of producing maybe less insulin, not the kind of complete lack of insulin production that you see in type one, but less, and also the body being less responsive to the insulin, [which is] something called insulin resistance. So particularly, the muscles are very important in the way you respond to insulin. And it’s that generic general resistance to insulin, that is the source of the problem. And type two diabetes – certainly when it’s initially diagnosed – you don’t have to be treated with insulin, because you’ve got some basal insulin being produced. It’s often initially treated with oral medication, and with diet. And then some people, if they have particular difficulties with glucose control, may ultimately be treated with insulin, but it’s not an absolutely essential part of the treatment from the beginning.

Evans: Well, Steve Sims who lives in Cardiff has type two diabetes, and he does take insulin.

Sims: The major effect from diabetes is having to take more note of what I eat. The fact that in restaurants, for instance, they won’t tell you quite often what’s in it. So it makes it difficult to judge them, what you can eat and can’t eat.

Evans: It’s carbohydrates that you have to be careful of, isn’t it?

Sims: I wouldn’t say you’ve got to be careful of [it]. Again, obviously, you’ve got to be aware of what the carbohydrate content of a meal is.

Evans: Well, I’m type two diabetes, as well, a fairly new type two diabetes. And my GP sent me on an expert programme. It’s called the X-PERT Programme. And the biggest shock to me when I started this programme was we walked into the room – [there was] about fifteen of us – it was taken by a diabetes specialist nurse and a nutritionist. The biggest shock was the packet of biscuits on the table in front of me. You go in and you think that this, this is going to be a ‘thou shalt not’ course.

Sims: Well, we all need carbohydrates, because we convert that into glucose, and that’s what gives us the energy for our muscles, etc. So we’ve got to have so much. The problem is that with, I would say the British diet or Western diets, perhaps, it does have a tendency to be carbohydrate-loaded. You’ve only got to think of a pub meal. What you would eat at home, perhaps might contain thirty or forty grams of carbs. Most pub meals are eighty or ninety grams of carbs. For some reason or other within our culture, we’ve had a tendency to [eat a lot of] carbohydrates, possibly, because in the past, I suppose we were all involved in a lot more manual labour than we are now, so we actually burned it off, which is point of eating it. But we’ve still got that habit, you know, the nice roast dinner and all the rest of it. You know, I’ve known people who have a treat every day, and then wonder why their diabetes is out of control, or why their weight’s going up as well. No, you don’t have a treat every day, you have a reasonable diet, and as any dietitian will tell you, you just stick to a reasonably low-fat, high-fibre diet.

When I did my X-PERT course, that’s one thing that surprised me with the dietitians and the diabetes specialist nurses that we had there. [They] were a lot more open minded. So if you said to them, you know, ‘I have problems walking any distance because of problems with my legs’. Their attitude was, ‘Yeah, okay, fine. Let’s look at what problems that’s causing, [because] we’ve got to be able to do it’. So they say, ‘Well, alright, don’t walk very far. So walk a little bit and stop, walk a little bit and stop.’. Which is, if I’m open about it, what I have a tendency to do, or I use a walking stick or something to help take the weight off. But they were willing to look at that, and incorporate that into what they said. You have to look at the whole human being not just our condition.

Evans: We talked about the X-PERT programme. The education programme [that] we’ve both done, presumably – you like me – at the start of your diabetes journey?

Sims: I did one recently as well. They brought out a new one, which is specifically for people on insulin. And that was a real eye-opener, it’s totally changed how I treat my diabetes now. I was injecting twice a day, I now inject five times a day, but I inject [in response] to what I eat. And that was the difference on that course.

Evans: Explain that to me.

Sims: I use an app on the phone – that dreaded technology comes in again – and I can work out the carbohydrate within a meal. I’ve got it set up so that I can then use that information, I check my blood glucose levels, I will then put that information in on the app, it will then tell me with the carbohydrate, how much insulin I need for that meal. So I can then adjust with fast-acting insulin for that meal.

Evans: I don’t take insulin. I’m just wondering, does that give the sort of permission to do whatever you like, to eat whatever you like? Or is there an education side with that, like, ‘Hang on, you still have to be careful’.

Sims: You can fall into the trap of just working out what’s in there, and as I say, take as much insulin as you want. You can do that on the odd occasion, obviously, but no, part and parcel of the course [is that] you still need to look at what you’re eating. But it appreciates the fact that, for instance, if you go out for a meal, you haven’t got a lot of control over what actually ends up on your plate. There’s a psychological element in it as well, as it’s giving me more control over my own life. So rather than the diabetes, controlling what’s going on, I have some control over the diabetes. So I can recommend the X-PERT course, to be honest, anybody with diabetes should get on it.

Evans: Well, this is something I’m learning too. There are actually three versions of the X-PERT course and ‘expert’ is spelled X-PERT, not to be confused with the expert patient programme. So, one course is for the prevention of diabetes. It’s an intensive lifestyle programme aimed at reducing risk of developing type two diabetes for people at higher risk. The next course is for people who have type one or type two diabetes. That’s the one both I and Steve went on, and I can thoroughly recommend it. And then there’s the course that Steve mentioned and recommends for people with type one or type two diabetes, and who are treated with insulin.

Ask your GP or practice nurse for more details, or go to the website diabetes.co.uk/education for more details of the X-PERT course and other diabetes management programmes. Well, of the complications that can occur with diabetes, that I mentioned earlier, it’s neuropathy and the pain that comes with it that I want to focus on. Professor Dave Bennett.

Bennett: Neuropathy generally relates to the peripheral nervous system, and the way you can think about that is your peripheral nervous system connects motor neurons which are going to drive your muscles from the spinal cord to the muscle. So that they provide the signal that makes your muscle contract and so that you can move, and the peripheral nerves also carry information back from your sensory nerve fibres that respond to sensory stimuli such as brushing the skin or putting the skin on something hot, and they carry the information back again via the nerves, back to the spinal cord. It’s a way of connecting, ultimately, your brain and spinal cord to the body.

Evans: So peripheral being, I presume, the peripheries?

Bennett: The periphery is actually anything outside the brain and the spinal cord, because your central nervous system refers to the brain and the spinal cord.

Evans: Now, how does diabetes cause neuropathy?

Bennett: So that’s a good question, actually. And I wish I could sit here and give you one very clear answer. Understanding of their mechanisms is still somewhat debated. We know certain things about it. So diabetes is a problem relating to control of your blood glucose. And if you have diabetes, then you either produce less of a hormone called insulin, which is needed to lower blood glucose, or your body’s resistant to the effects of insulin. And the end result of that is – you have an average [of glucose] over the course of a day – someone with diabetes, their blood glucose is higher than the general population.

And we know that there is a relationship between how high that blood glucose is and your risk of getting neuropathy. So partly, the risk of neuropathy is related to what we call glycemic control, which is the medical word for what your blood glucose is, on average. But there are other factors as well. So we also know that if you have particularly high levels of lipids, by which I mean things like cholesterol, that is also a risk factor for diabetic neuropathy. So we know something about the risk factors, what we don’t really know is the exact mechanisms of the disease. Now, there’s theories. So one of the theories is actually one of the kind of generic issues with diabetes – is that the small blood vessels don’t function as well as they should. So a good example of that is some people with diabetes get diabetic retinopathy. And that is a problem, essentially, of the blood vessels within the retina in the eye. And that’s why people with diabetes need regular eye checks.

Well, the nerve, like any other tissue in the body, has blood vessels in it. And the health of the nerve is dependent on how good that blood supply by those blood vessels is. So one likely problem in diabetes is an issue with the blood supply to the nerves. But there are other factors. So the fact that you have this high glucose, that can then give rise to modifications of proteins in your body and change in the metabolism, that particularly impact on the way that nerves work. And so for instance, an analogy would be, [if] we were sitting in an auditorium today that was about forty metres long. And if your peripheral neuron – like your sensory neuron – if you were to say that that is the size of that auditorium, [then] what we call the axon, which is the bit that carries the electrical signals, which connects to, for instance, the skin or the muscle, [and] the analogous situation would be the axon goes all the way to Paris.

Now, that is a big challenge for something to get cargos – such as everything you need to keep your nerve healthy – [across] all that distance. And one of the things that that can happen in diabetes is that the support of those axons begins to fail, because of the changes in metabolism and the altered blood supply. And that is one of the key events that causes diabetic neuropathy.

Evans: So explain how it develops, and what it feels like.

Bennett: The symptoms of diabetic neuropathy – usually, the symptoms that patients notice – are to do with sensation, and the typical features that they might have [are] … because of this challenge, which we did speak about nerves – one of the things they need to do is get the kind of the nutritive functions, the transport of all the things those nerves need to survive, needs to go over a really long distance. That then makes sense, actually, as it is the longest nerves in diabetes that are affected first. So in fact, the place that most people with diabetes first noted problems is their feet. And what they would notice, for instance, is that their feet may feel numb. And that numbness may very gradually, over months or years, kind of spread up towards the ankles, or if it was severe, up towards the knees, they may notice pins and needles. So that sensation if you’ve crossed your leg for a period of time, which is quite unpleasant, actually, and they may not, of course, crossed the leg and they may just notice that spontaneously. And also pain, which is again, usually most commonly in the feet, it can have a nasty kind of burning quality to it. Usually it’s more severe at night than it is during the day. If the neuropathy progresses, they might notice problems in other parts of the body, such as the hands, which again, are relatively long nerves, but usually it’s the feet where we see the first problem.

Evans: Professor Dave Bennett. Steve Sims has diabetic neuropathy.

Sims: It’s not just pain, you also have the other effect, which is [that] I have very little feeling in my feet. I’m not getting the sensations from my feet that tell me that I’m balanced. So that was the first effect I had with it. So this is why I’ve got handrails, put here on these steps, and on the steps in the front, so that at least I can maintain my balance.

Again, if I’m walking, I have a tendency, you know, for walking any distance I use a walking stick, mainly because it gives me another point of reference. That was the first effect I found with neuropathy, the pain came later. It’s a difficult pain to explain. Because it’s random. It always hits the same areas, but it doesn’t always feel the same. Sometimes it can be just as sort of a minor niggle. Other times, it can be that strong, it will bring tears to your eyes. And it might last anything from a couple of seconds to three, four or five hours. But then it’ll suddenly stop and it will just turn itself off. That is probably one of the most difficult things to deal with.

It’s not too bad during the day when you’re up and about. Because changing your weight around, moving around, can ease it. Most of mine is in the feet, [but] you can get in the hands as well – most of the periphery nerves. But it’s at night it’s the worst. Whether or not having weight on your feet actually makes any difference [to] the pain, or whether it’s if it’s a distraction from the pain. You can take painkillers, as I do, at night, sometimes if it’s really playing me up. The trouble is that they will only dull it, they won’t get rid of it. They’ll just dull it off. Mind you, sometimes you can, as I normally do, take paracetamol – I can take two paracetamol and the more that I take them, it switches itself off – it is that random. It’s really difficult, you know. I’ve had other cases where I probably had about half an hour sleep through the night, because what will happen is it will suddenly calm down, so you drift off to sleep, [then] ten minutes later, it starts back up again.

I end up with a few different types of pain, as well. On my left foot, it’s as if somebody is driving a spike up between my little toe and the toe next to it. Literally, driving it into my foot between the toes. And then that pain will grow until it grows down the side of my foot. When I spoke to one of the nurses about it, she said well, what it’s doing is it’s following the track of the nerve.

On my right foot, I end up with two or three different effects. Sometimes it’s like a prickling across the top of my foot. And again, that pain will grow. I also get, on the side of that foot, like a friction burn. Sometimes if I turn over, so I take pressure off that foot, that [pain] will go. That’s one of the problems with it: it’s random. And I found out something else about it some time ago – I actually passed out while I was giving blood, and they thought I might have had a heart attack, because many years ago I did have a heart attack, so my ECG is a bit weird. Talking to one of the doctors afterwards – as it was I just passed out, it was warm and I just keeled over – but he said the thing they were worried about is because of the neuropathy, you may not suffer with pain from a heart attack. It can affect the nerves around the heart as well, that I wasn’t aware of until he said. To some extent I wish he hadn’t told me. You know, ‘yes, it’s nice to have the information, but can you tone it down a bit on occasion?’

Bennett: Because one of the difficult issues of diabetes – at the same time as you may have a diabetic neuropathy – is that some patients with diabetes have problems with the blood supply to the legs. And you can have this combination of where there’s not enough blood going to the feet, and at the same time, you’ve got loss of sensation in the feet. And that’s why you might hear this term the ‘diabetic foot’. That’s why you will hear the doctors say it’s very important that you look after your feet, because, number one, you could injure the feet and not feel it. Someone that doesn’t have diabetic neuropathy might walk along the floor and might just stub their toe or might stand on something sharp, you know, [and] they would know that there was a problem there, [but] someone with diabetes might have something in their shoe rubbing them, and get a nasty blister, and they they’re completely unaware of it. And then the second thing is, at the same time as getting these injuries, their body’s less good at healing itself, particularly because the blood supply to the feet is not as good. So you’re more likely to get infections or ulcers on the feet. And that’s why it can be this difficult combination of both neuropathy and what we call peripheral vascular disease and diabetes, that [means that] people really need to look after their feet.

Evans: I guess this is why, in my annual diabetes check-up, the diabetes nurse tickles my feet, and puts a tuning fork on it, and says, ‘Can you feel it?’

Bennett: Yes, the tickle of the feet is probably not a tickle with her fingers, it’s probably a little monofilament. So it’s a little filament. And she touches that filament to the skin and says, ‘Can you feel that?’ So then she’s checking for sensation. So that’s seeing that the sensory nerve fibres can carry that information. If you think about it, they’re carrying transmitting information from the skin, to the spinal cord and then ultimately up to the brain. She’s testing two different types of nerve fibres. So you have a kind of nerve fibres that will carry information about touch and then there’s also nerve fibres that can detect rapidly changing vibrations, [and] that’s what the tuning fork is doing, it’s causing that vibration, and she’s checking that you can feel the vibration on the toe as well.

So it’s great that she’s doing that and the idea is she’s screening for diabetic neuropathy. And obviously, the measures you would take if someone had diabetic neuropathy, is [that] you may look again at how can we optimise what we call your glycemic control – the blood sugar control. And also measures to really looking after the feet, making sure that you shoes are… [that] you’re checking the feet at the end of the day, that you might need to go and see a podiatrist – to keep an eye on the feet, those kinds of measures.

Evans: So having established what diabetic neuropathy is, how do you treat it?

Bennett: I would love to sit here and say to you, ‘If someone has diabetic neuropathy, we’ve invented a tablet, you take that tablet, and it’s going to make your nerves regrow’. But I can’t, [because] that has not been invented yet. So there is research into that, and some of that we’ve discussed at this conference, but we don’t have anything yet that makes nerves regrow. There have been clinical trials of tablets to try and help diabetic neuropathy and unfortunately, so far, all of those clinical trials of tablets for diabetic neuropathy have essentially failed. So trials that optimise glycemic control have worked, particularly for type one diabetes, but trials [that] have tried to take a new tablet to prevent diabetic neuropathy have not worked.

But trials of weight loss and exercise are showing signals of success. There’s really quite a good evidence base that keeping fit and doing exercise is incredibly good for your nerves. I mean, it kind of makes sense, but there is actually some scientific evidence for that. And actually, they literally counted the number of nerve fibres in the skin, then got some sort of exercise programme, lose weight and, three months later, the number of nerve fibres in skin has increased. And so people need to take that on board – that probably the worst thing you can do is stop exercising, have a sedentary lifestyle, [because] that is not good for your nerve function.

Evans: We’re not talking about reversing?

Bennett: No, I am. In terms of exercise, I am. I’m saying [that] you’re taking people that have a low nerve count, and then you’re getting them to exercise, and the nerve count increases.

Evans: For both forms of diabetes?

Bennett: Most of that data is on type two diabetes, as far as I’m aware.

Evans: If somebody does have pain as a result of their diabetes – or perhaps they don’t know it’s as a result of their diabetes – if somebody has pain, and they are diabetic, what should they do?

Bennett: It’s worth going to see your GP about that. I mean, there are a number of causes of pain in diabetes that [are] not always related to peripheral neuropathy. So sometimes people get pain because they’re not getting enough blood supply to the feet. Sometimes you’re at higher risk of getting an ulcer infection. But let’s assume that someone has diabetic neuropathy, and as a consequence of that they’ve developed pain. Typically, the pain would be in the feet, and usually both feet. And people often describe it as – not always – but they often describe it as a burning pain. And it may be accompanied by other sensory symptoms. There is a kind of paradox, and patients of mine ask me, ‘Doctor, I don’t understand. My feet are numb. So I touched them and I can’t feel anything, but they are continuously painful’.

The reason for that paradox is that the feet are numb because the nerve fibres have, as it were, degenerated back from the skin. So they’re no longer connecting where they should be to the skin. And this is something damaging the body; your pain fibres are completely silent. But when they’re not connected to where they should be, they just start firing all the time. And that is almost like an illusion to the brain. So you can’t feel things because they’re not connected to the skin. But the brain is getting this input all the time, so you’re getting this feeling of continuous pain. So that’s a source of that paradox. If people are getting those kinds of symptoms – well number one, obviously, if they’re not already been diagnosed with diabetic neuropathy, it’s worth them being examined by the doctor and looking for clinical signs of diabetic neuropathy. And we’ve discussed about the general issues about diet and blood glucose control. Then also there are tablets that we can use – medications to try and damp down that pain.

So that pain is what we call neuropathic pain. And all that means is it’s pain that’s due to damage of the nervous system, sensory nervous system. That’s all that neuropathic pain means. But with most of those tablets, what we’re trying to do … If you think about it, you’ve got too much electrical traffic in the sensory nervous system. And essentially, tablets are trying to damp down that electrical traffic. That’s a way of thinking about it. And so, there’s an array of medications that can be used and they can be prescribed by your GP. To give you some examples, there are tablets that are generically called gabapentinoids, [they] are one group. And there’s another group of tablets that were actually initially developed as antidepressants, but not only are they antidepressants, they are actually analgesics, they clearly reduce pain as well. Sometimes a kind of misconception of patients is, ‘I went to the doctor, I’ve got this pain in my feet and my doctor just thinks I’m depressed and he just fobbed me off with an antidepressant’. That is not the case. What I’m trying to explain is that these tablets – although, kind of, if you were to look them up in the medical text, they say would say that they’re antidepressants – there is good evidence that they’re also painkillers, [that are] particularly effective for neuropathic pain, and that’s why your doctor’s prescribing them.

Evans: What I do know – what I have been told is, yes, control it by diet, which is what I do, or you go on to medication. But if you ignore diabetes, it is very, very serious, you cannot ignore it.

Bennett: I think that’s a very good point. It’s difficult because it’s to do with human nature. And the issue is that you may not feel particularly unwell, your doctor may tell you that you’ve got diabetes, but actually [you] say, ‘Well, in myself, you know, I’m getting around, I’m going to work, I’m not really seeing lots of problems, what is the problem?’ And of course, the issue is, is you’re storing up lots of problems for the future. So diabetic neuropathy, which, you know, in its initial phases may be very subtle, and you might have a very mild diabetic neuropathy and virtually not know it’s there. But of course, that may then progress so that you’d have numbness or the feet [or] severe pain in the feet. And some patients have trouble with what’s called the autonomic system, which is needed to control your blood pressure and the way you handle food.

Some people may get problems with their eyes. And again, initially, there will be a, kind of, very trained doctor looking at the back of the eye [who] might say, ‘Well, I can see some subtle changes there,’ and the patient says, ‘I don’t notice any problems at all.’ But in five years’ time, they could have threat, then, to their sight, to their vision, because of the problem with diabetes. Same thing with the kidneys. And again, initially, you might not notice any problem, but if this was left untreated, you might have complete kidney failure and need to go on dialysis or have what’s called a renal transplant. So it’s difficult because you’re saying to people at the early stages, you need to take this seriously and try and address it, as [much as] you can, [because] you want to prevent all these problems in the future. Whilst, of course, human nature say, ‘Well, I feel fine now, do I really need to worry about it?’

It’s such a simple thing to test for. Definitely be aware if people have symptoms, if they’re finding that they’re passing urine a lot, if they’re having to drink a lot, they’re always thirsty. Maybe people are getting lots of infections, skin infections that they wouldn’t normally get. Particularly if there’s a family history of diabetes, particularly if there are some issues with some weight gain, say over the last few years. It’s worth getting tested for diabetes, because we are in an epidemic; the rates of diabetes are going up and up and up. And you can make these early changes to your health, that in the long run are going to make a massive difference.

I’ll be blunt, the biggest risk factor – the reason that we have a diabetes epidemic is obesity and weight gain. So people can take measures to try and eat a healthy diet, keep to a healthy – what we call body mass index. You can use simple calculators online, actually, where you can calculate your own BMI, and it will tell you whether you’re in the kind of optimal range, whether you’re underweight, whether you’re overweight, whether you’re obese and what your risk is. And you know, it’s really worth thinking about that because then you could entirely prevent the problem. I’m not saying that all diabetes is due to obesity. That’s not the case. There are a number of causes. But it is one of the risk factors that people can do something about. We can’t fight our genetics; our genetics are given to us by our parents. And there’s nothing we can do about that. But I’m just talking about things that people can do, that can make a difference, and that is to have a healthy lifestyle.

Evans: Professor Dave Bennett of the University of Oxford. As always, 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’s the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

You can find all the resources to support the management of chronic pain, including details of Pain Concern’s videos, leaflets, all editions of these Airing Pain programmes and Pain Matters magazine at painconcern.org.uk. So another reminder, at the end of this edition of Airing Pain, is to say that help and support to manage any chronic pain condition is available from many quarters, not just from healthcare professionals, but [also] in patient support groups. You can find the diabetes support group in your area at the Diabetes UK website, which is diabetes.org.uk. And Steve Sims is Secretary of the Cardiff diabetes group.

Sims: By going to a support group, you will find people there with experience of the condition. Particularly if you’re newly diagnosed or you’ve got a problem which you’ve not had before, the chances are, when you come to the group, [that] somebody will have experience of it. They won’t give you medical advice, that’s the last thing that we’re there for. But we might tell you to get back in touch with your diabetes care team, [because] you need to talk this out with them. Or in some cases, it’s a matter of, ‘Yeah, well I’m afraid that comes with the territory’. We also have the carers come to the group as well. Without my wife I wouldn’t be anywhere, yet they’re forgotten. With any chronic condition, your carers are one of the most important parts of your treatment, your support. They’re vital.


Contributors:

  • Professor Dave Bennett, Professor of Neurology, Nuffield Department of Clinical Neurosciences, University of Oxford
  • Steve Sims, Secretary, Cardiff Diabetes Group.

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) – iasp-pain.org
  • Diabetes UK, a leading UK charity that involves sharing knowledge on diabetes – diabetes.org.uk/.

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Managing neuropathic pain related to diabetes, and how to adapt diet to treat the disease

This edition of Airing Pain has been supported by a grant from The Champ Trust and Foundation Scotland.

According to the most recent Scottish Diabetes Survey in 2018, there are an estimated 304,000 people living with a diagnosis of diabetes in Scotland, around 5% of the population. A long-term effect of diabetes can be the development of diabetic neuropathy. This edition of Airing Pain focuses on neuropathic pain in people with diabetes, and how the X-PERT diabetes courses helps people to deal with the complications that arise when living with diabetes.

First up, Paul Evans speaks to David Bennett, Professor of Neurology at the University of Oxford, who outlines the differences between type 1 and type 2 diabetes and how the initial treatment plan differs between the types. Professor Bennett then goes on to describe how neuropathy develops in people living with diabetes and how neuropathic pain manifests.

Paul then talks with Steve Sims, who lives with diabetic neuropathy as a result of type 2 diabetes. Paul and Steve discuss how they have adjusted their diets to deal with type 2 diabetes and how the X-PERT diabetes course has helped them to adjust to living with diabetes.

Issues covered in this programme include: Diabetes, the differences between type one and type two diabetes, diabetic neuropathy, diabetic retinopathy, nutrition, diet, insulin levels, glycemic control, risk factors of diabetes, peripheral vascular disease, foot pain, burning pain, gabapentinoids, and support groups.


Contributors:

  • Professor Dave Bennett, Professor of Neurology, Nuffield Department of Clinical Neurosciences, University of Oxford
  • Steve Sims, Secretary, Cardiff Diabetes Group.

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) – iasp-pain.org
  • Diabetes UK, a leading UK charity that involves sharing knowledge on diabetes – diabetes.org.uk/.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

According to the most recent Scottish Diabetes Survey in 2018, there are an estimated 304,000 people living with a diagnosis of diabetes in Scotland, around 5% of the population. A long-term effect of diabetes can be the development of diabetic neuropathy. This edition of Airing Pain focuses on neuropathic pain in people with diabetes, and how the X-PERT diabetes courses helps people to deal with the complications that arise when living with diabetes.

Watch the trailer above for more details

Contributors:

  • Professor Dave Bennett, Professor of Neurology, University of Oxford
  • Steve Sims, Secretary, Cardiff Diabetes Group.

Available to listen on our website, or download from wherever you get your podcasts.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

Rethinking long-term pain management

To listen to this programme, please click here.

This edition of Airing Pain has been supported with a grant from Kyowa Kirin donated for this purpose. 

The opioid crisis reached its peak in the United States in 2017, where addiction and overprescription have led to 218,000 deaths from prescription overdoses between the years of 1999 and 2017. The side effects of opioids can affect the day-to-day activities of people managing long-term or chronic pain, yet society as a whole has yet to fully evaluate the relationship between opioids and addiction.  

In this edition of Airing Pain, producer Paul Evans talks to two leading pain specialists. First off, Paul Evans meets with Dr Srinivasa Raja, who discusses opioids effects on the body’s opioid receptors and how the human body processes pain. Dr Cathy Stannard then talks about the increase of opioid prescriptions in the UK and how the opioid crisis in the United Kingdom developed. 

In the second half of the programme, Paul speaks with Louise Trewern, a chronic pain patient and patient advocate, about opioids’ detrimental effect on her quality of life and how she was able to transition towards more effective methods of chronic pain management. 

Finally, Paul sits down with Dr Jim Huddy, a GP in Cornwall, who explains how the medical community is re-evaluating the relationship between opioids and chronic pain. 

Issues covered in this programme include: Cancer, chemotherapy, exercise, fibromyalgia, medication, neuropathic pain, opioids, painkillers, physiotherapy, prescription for pain, psychology, side effects and dosage.

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 those who care for us. I’m Paul Evans and this edition of Airing Pain has been supported with a grant from Kyowa Kirin.

Louise Trewern: Hyperalgesia was one of my biggest problems. I couldn’t have dental treatment properly. I had to have multiple injections because they couldn’t numb me. It was gradually, over a period of months, suggested to me that the dose I was on was not helping me, it was making me worse, and that a lot of the symptoms I was suffering [from] was as a result of my opioid use.

Evans: In this edition of Airing Pain, I want to look at the use of opioid medication for the management of chronic pain. The so-called opioid crisis or opioid epidemic in America came to a head in 2017 when, contrary to the reassurances of pharmaceutical manufacturers that patients were less likely to become addicted and an aggressive marketing campaign, addiction, overdose and death rates soared.

Before we delve into how this affected people with chronic pain in the UK, I want to try and come to grips with some of the science behind the drugs and how they work. Now opiates are naturally derived from the opium poppy plant. They include morphine, codeine, heroin, and others, and have been used for medicinal and recreational purposes since prehistoric times. Opioids, on the other hand, which include tramadol, methadone, pethidine, fentanyl, and others, was originally coined to denote synthetically sourced opiate-like medicines, but confusingly to me anyway, the term opioids is now used to also include the naturally-derived opiates. So, for the sake of clarity, an opioid is a compound that acts on opioid receptors in the body. So, what’s an opioid receptor? Professor Srinivasa Raja of Johns Hopkins School of Medicine, Baltimore, in the United States is internationally recognised for his research into neuropathic pain.

Srinivasa Raja: One of the scientists and neuroscientists, Solomon Snyder, worked on this in the 60s, and he asked what now looks like a very straightforward and simple question. He knew and most of us, physicians or healthcare providers, know that drugs such as morphine work well in treating pain, particularly things like pain after surgery. So, the question he said [asked] is: ‘There must be something in the body that should be the site where these drugs are working’. And he found these receptors called opioid receptors, and he found that they were present in multiple areas not only in the brain, but [also] in the spinal cord and other sites. You know, one of the questions is ‘What is the role of these receptors?’. Are they there only for drugs given by physicians to work in the human nervous system? So, you know, the question he asked is: ‘What is the role of these receptors in the body?’. And he came to the understanding that there are endogenous pain control mechanisms, that the body has a way to control pain. And, often, the good example given is athletes who are in the middle of a game – a World Cup – and, you know, can be injured but continue to play and don’t perceive the pain till the end of the game when they find something that they hurt themselves. There was a good example of a US gymnast who did her last jump with a fractured ankle. It wasn’t found until after that. So, I think that the body, especially at times of stress, releases endorphins or these endogenous opioid peptides, which then work on these receptors to control pain. So, I think it’s a protective mechanism that fortunately most of us have.

Evans: It’s fairly common for top class athletes and football players, rugby players, whoever to go through what they call the pain barrier. Why are they more capable of doing that than say, the man or woman in the street?

Raja: Wow, that’s a challenging question. And I think the answer to that is complex in the sense that the pain experience is a very personal thing and, given the same injury, different individuals perceive the pain differently in terms of intensity and emotional aspects of it. I think [that] as far as the athletes [are concerned], there may be two reasons. One, there may be a bit of training, you know, prior experiences, saying that this injury usually lasts for a few days, I’ll be better and, you know, I need to move on. They go through these repeated injuries, maybe there is a bit of adaptation to that injury. So, they don’t experience the pain in the same way. The other aspect is, it’s interesting how people talk about motivation and the result of the pain and how you react to the pain may have some implications for an athlete. You know, if he exhibits pain, he may be pulled out of the game and maybe he doesn’t want to do that. Similarly, we noticed that given similar injuries in a developing world, people move on because what that means to them is loss of their day’s work, you know, if they don’t go to work, they don’t get paid.

Evans: They don’t have the option of giving up.

Raja: Exactly. They don’t have the option. They may be experiencing the pain, but how they react to that pain experience may be very different.

Evans: Now, there are people who don’t experience pain. Is there a relationship between that and the opioid receptors?

Raja: The most common type of absence of pain or that group of patients that have been well studied is not necessarily from opioid receptors, but more so from a specific sodium channel that signals pain. But there are mutations of the opioid receptor that have been observed and reported in humans. The implications there have been that how these patients may respond to opioid medications may be different, and their pain experience after things like surgery may also be different.

Evans: We’ve just had an interesting case in the news recently of a woman who can’t experience pain. She only knows when her hand is on the hot plate of the cooker because she can smell it burning, but also, she experiences no anxiety.

Raja: That’s an interesting observation. And it tells us that these receptor systems in the nervous system are often not having a single role. They often have multiple roles and they are multiple sites. And this is the challenging part of basic science and the translation of basic science to clinical new drug development. A very good example of that: there was a lot of work done on what’s now known as the chilli pepper or hot pepper receptor – the TRPV channels. These channels are well characterised and drugs were effective – antagonists or drugs that block these receptors are very effective in animal models of pain – so much so that it did go all the way up to clinical trials. What was observed in these clinical trials was that these animals developed hyperthermia or increase in body temperature. And this was totally unanticipated from the earlier studies in experimental animals. Subsequent studies found that not only do these TRPV-1 receptors or channels are involved in pain signalling, but they’re also involved in thermal regulation or regulation of body temperature. So, when you block these receptors, you do have effects on pain, but you also have an undesired effect on body temperature.

Evans: Professor Srinivasa Raja of Johns Hopkins School of Medicine, Baltimore, in the United States. With the American opioid crisis coming to a head in 2017, The Times newspaper warned that ‘the UK is hurtling towards a US style crisis’ where super strength painkillers have killed more than 91,000 people in the past two years. Now, to be clear, NHS guidance says that opioids are very good analgesics for acute pain and pain at the end of life, but there’s little evidence that they’re helpful for long-term pain. Despite this, they were widely prescribed for long-term or chronic pain. Opioid prescribing more than doubled in the period 1998 to 2018. Dr Cathy Stannard is a leading pain medicine specialist now working with the NHS Gloucestershire Clinical Commissioning Group. She is an internationally-recognised expert on aspects of pain management and opioid therapy in particular.

Cathy Stannard: It is a fact that pain and pain prescribing has this almost unique position where people are left on medicines even if they still have pain. So, if we treat somebody for blood pressure, and they come back and their blood pressure is still high, we do something else. If somebody is in pain, and they come back and the pain medicines aren’t working, we either put up the dose or just leave patients on it. And it’s very understandable that patients, who are taking medicines but not observing much in the way of pain relief, would make the not unrealistic assumption that if they reduce their medicines the pain would be worse. We know that’s not the case. And often people can feel better and more alert and shed side effects when they’re supported to come off medicines. But if you’re in a very short, pressured medicines use review, if you’re not reporting active adverse side effects, it’s our experience that nobody will have had a conversation as to precisely how well those medicines are doing what they say on the tin. And, actually, that’s where the results are often disappointing. So, it’s not something that can be resolved with a superficial, you know, what’s this medicine doing? What are the side effects? It is much more complex about the way that the medicines are working for that patient.

Evans: The way these things are communicated to patients is often interpreted in completely the wrong way. The opioids are being taken away from me. I’m now a drug addict. I’m criminalised. Maybe the press is at fault, maybe we’re at fault. How do you communicate these things? The problems the patients are feeling?

Stannard: I think that’s really important. And there’s been a huge frenzy of variable quality reporting, particularly around the opioid issues at the moment. And there’s an undoubted public health disaster of biblical proportions in the United States, initiated by people taking opioid medicines for pain and now moving on to various illicit substances. I think there are lots of protective factors about our own healthcare system in the UK and I think it’s unhelpful to make quick decisions on the basis of what we see at a United States population level. I think it is important to communicate, with people using these medicines, what we’re trying to achieve. And the most important message to get across is that we do not want to expose people to the harms of medicines that aren’t working,

Evans: How to get it over, you know, this isn’t doing you any good, you will be better, taking fewer drugs.

Stannard: It’s not that easy and nobody finds it easy to have that conversation. I think it’s about bringing people to that realisation themselves. So, when I assess a patient, I will spend maybe half an hour talking about the patient, what life is like for that patient living with their pain, what limitations that pain brings. Then we get onto the medicines’ history. And you know, they may be on several medicines and I kind of will say to the patient: ‘You said how difficult your pain is and you’re taking these medicines, do you think the medicines are making much difference?’ And there is a dawning realisation that it’s just like taking Smarties – is something that we commonly hear. We know that patients are fearful of reducing because of course, if your pain is bad and you’re on medicines, what if it’s worse? It’s very difficult and it depends on the individual’s perceptions and so on. But we do have evidence from a huge number of patient reports that, freed from the many burdens and side effects, people feel much more alert, able to engage with their families and engage themselves in strategies which help manage their pain. So, we know that most of the medicines that we prescribed for pain which actually stop the way that nerves talk to other nerves do have side effects which make people sleepy, sedated, giddy and so on. And all those things make it very difficult to start trying to manage people’s lives to try and mitigate the effects of long-term pain. It is more about the balance of benefits and harms and it’s more about getting people to reflect how well they think the medicines are supporting them, which is often that they’re not.

Evans: Dr Cathy Stannard. Louise Trewern has lived with pain for most of her adult life. She was prescribed opioids for over twelve years and was the first inpatient at Newton Abbot Hospital in Devon to come off them.

Trewern: The day before I went into hospital, I had clocked up something like twenty-five steps on my pedometer, probably that was from the bed to my chair, the chair to the bathroom and then back to bed. And I was touching twenty-five stones in weight, and my life was pretty non-existent by this point. I’d been on opioids for over twelve years – high dose. And it was suggested over a period of time that I needed to come off this medication because, in actual fact, it wasn’t helping me.

Evans: How was it put to you that you should stop?

Trewern: It was gradually, over a period of months, suggested to me that the dose I was on was not helping me, it was making me worse. And a lot of the symptoms I was suffering was as a result of my opioid use. And I definitely – hyperalgesia was one of my biggest problems. I couldn’t have dental treatment properly. I had to have multiple injections because it couldn’t numb me. I couldn’t have the cats walk over my legs, because the pain was intense. And then I suffered a couple of quite severe medical episodes, which meant I was an emergency   admission to hospital, which met the criteria to have me in and get me off these opioids. My initial week in hospital was where I came— they halved my dose overnight and the doctor said to me that, in the morning, your pain will not be any worse, I can guarantee that and I had to put my trust in him and it was true. It wasn’t worse. Since then, we’re talking two years now, I’ve lost seven stones in weight. I know walk up to five miles a day. I still live with pain on a daily basis, but I deal with it without medication apart from perhaps a couple of paracetamol.

Evans: Louise Trewern. Jim Huddy is a GP. He is Cornwall Clinical Commissioning Group Clinical Lead for Chronic Pain.

Huddy: Cornwall has always been a heavy prescriber of opioid analgesics for pain and that is not a good thing because we know that the higher levels of opioids in a population, then that is associated with, well to cut a long story short, higher levels of misery. So, we really wanted to bring that level down. A lot of people talk about reducing doses and it is really important to put out there that there are some people who are on the right dose for them and we really don’t want to be taking away drugs that work for people, but what we think from the medical side is that the vast proportion of people with chronic pain who are on opioid medications, those medications probably aren’t working very well. And, more importantly, if they were on a much lower dose or possibly even off the drugs, then not only would they feel better but their lives would get better. So, that’s why there is a big emphasis on this. It’s not purely a money-saving exercise although it does save a lot of money which we can then sort of put into other directions which is quite exciting, but it really, honestly, and science does back this up, but a lot of the time people don’t feel any worse or a lot of people talk about getting their lives back, and that’s particularly if they are on very high doses. The Faculty of Pain Medicine have put out what I describe as a ‘national speed limit of dose’ and that is 120mg of morphine and over this dose the science is clear that this is going to be more damaging than good for you. So, that group of patients who might be on 200, 500, maybe even up to 1000mg of morphine per day are very likely to be more harmed than benefited by that. But the problem with those drugs is that they have effects on the mind and the body that make the mind and body need their doses each day. And the idea of reducing or stopping the drug is so scary for patients that, very often, they don’t believe that that’s in their best interest. So, it’s a very interesting and challenging consultation, where sometimes the doctor and the patient have very opposing views, but we have got some expert patients that are helping us and, actually, we’ve got a video from NHS England that’s about to be released of one of our patients called Sean, and there’s a little bit of me on this video, that tells Sean’s story. It’s only a three- or four-minute little bite that could be watched in consultations and Sean’s absolutely engaging with explaining his sort of epiphany of life could be better without these strong drugs. And now he’s not on the strong drugs and he’s back on his jet-ski. It’s a great story. And that’s why we believe a lot of people out there would have better lives if they’re deprescribed their medication.

Evans: It’s a conundrum, isn’t it? The fact that people are on these higher doses of opioids prescribed by their doctors. Did that last one work? No, have a bit more, have a bit more again, have a bit more again. So, doctor has said this is good for me. And now doctor’s saying it’s not good for me?

Huddy: Yes.

Evans: How do you square that circle?

Huddy: Yes. Well, the way I explain it to patients is that, you know, medical and medical understanding, medical beliefs are an ever-changing field and for various reasons, which aren’t very sort of wholesome or particularly nice. I think over the last ten, twenty, thirty years pain specialists were led to believe by drug companies that if you give high enough doses of opioid medications, you will get people pain free, and it’s their right to be pain free. And this was when I was at medical school in the mid-90s. This is what was taught to us the WHO analgesic ladder, you keep going up the ladder until you get someone pain free. And we all believed that that was the way to go. We now don’t believe that. We now kind of know from the science that the data that that was based on was flawed, let’s put it politely. And, more recently, we’re getting research that is showing that, just as you described, when you start these medications very often there is a, there’s a temporary benefit that then wears off. So, then, you have a dose increase and there’s a temporary benefit which then wears off and, just as you described, people get on higher and higher doses and sometimes some very, very high doses. Now what’s really tricky is that when you do the reverse process, the reverse process happens. So, when you drop the dose, their pain gets worse for a bit, and then it goes back to the baseline, and then you drop the dose again, and the pain gets worse. So, we are embarking on a treatment schedule which might, you know, go on for six, nine or twelve months. It has to be done slowly and the patient has to realise that, you know, there is a bit of a storm coming, this isn’t going to be an easy ride. But the benefits at the end of it, if you talk to the patients who’ve done it, are worth that pain. But for a doctor to be suggesting a management approach for the next few months that’s going to be painful for you is quite a tricky one. That’s not what we’re trained to do. And it is a complex and quite challenging consultation that I certainly haven’t mastered. I’m, you know, trying to perfect it and some patients are more up for it than others, but they do have to believe and we do believe that having alternatives to make things easier during this process is a really important part, which is why we’re emphasising alternatives to pills at the moment.

Evans: That’s GP Jim Huddy. Louise Trewern, having been the first inpatient to come off opioids at Newton Abbot Hospital in Devon, is now working with a doctor to help her to help others reduce or give up their opioid use for the management of their chronic pain.

Trewern: I am working with the doctors that helped me come off the opioids and back twelve months after that because I needed that long to recover as it were. I’ve been working with them, and it’s a multidisciplinary group, on a committee called the Rational Use of Opioids. So, I’m helping the team make patient leaflets and videos for the website, this is in Torbay, for proper use of opioids, which will hopefully help those that don’t seek help and those that do, inpatient and outpatient leaflets. So, because the things I experienced, both before and after, are not all in the journals, they’re not, it’s not all written down. Some things they’ve heard about, but they didn’t know for sure that it was happening. And it’s not just me. There’re several patients now in Torbay that they’ve helped since and it’s just that I was the first inpatient that they did this with. So whereby certain things they thought would happen, they’re now going to put this in a warning in the leaflet. You know, if you come off opioids too quickly, this could happen. And we’ve been told this happens and not necessarily to everybody but it, it can happen, just so that people are aware of the dangers. You can’t just stop these drugs, but not everybody knows this. So, they’re taking my experience plus, putting it together with the medical side and physical therapy. All the different areas are coming together to make these leaflets that will be circulated in GP surgeries and on the website. And so yeah, it is working. And I’m sure with Torbay, it’s not just in this with opioids, it’s with other things as well. And so yeah, it’s hopeful that, that will continue and it needs to be countrywide, I think.

Evans: So rather than like the leaflets we get in all our packs of medicines and tablets, they list all the everything that could happen to you and more. These are coming from your voice. This is, this has happened to me. And this is what can happen after.

Trewern: That’s it and one of the key things that we’ve gone out of our way to make sure of is that, between the team, the language is what can be understood by the person taking those opioids.

Evans: Louise Trewern and there is information on the use and withdrawal of opioid medication at Torbay and South Devon NHS Trust Pain Services website. I just entered the words ‘Devon’, ‘pain’ and ‘service’ into my search engine to get me there. In neighbouring Cornwall, where Jim Huddy is a GP, the overprescribing of opioids has come down by 18% in three years.

Huddy: An 18% reduction is a much bigger reduction than most of the CCGs in the UK and we assume that a large part of that is because of the work that we’ve done.

Evans: So, what has brought that down?

Huddy: Some of this is assumption and some of this is hope. But we also think that some of it is logical, that a lot of our work has been based around GP education, and GP education that the way to deal with someone who’s got chronic pain is not to just reach straight for the prescription pad, which is our tendency as doctors because that’s kind of how we’re trained. We decided to write some information for patients and write information for doctors, and we did that, and it was all brilliant, and we published it on one of our websites, and no one read it because it was long-winded and everyone’s busy. At that point, we thought, okay, we need to rethink this. So, we decided to move in a direction of video education. So, we’ve now made three videos, mainly for prescribers, really, we’re going to move on from that in time. But the videos that we’ve got, one is about sort of safe opioid prescribing, one is about safe deprescribing of opioids. It’s quite a sort of chunky thing. It’s about half hour of like me narrating a PowerPoint presentation about identifying what patients might be right for deprescribing and how to engage them and how to do it safely and how to support them during it and also consultation skills and practice-based strategies. How to make yourself more robust against patients that might be quite keen on continuing their doses, let’s say. Then the third video that we’ve done more recently is entitled ‘If I don’t prescribe, what do I do?’, which starts introducing ideas of how to talk about self-management as a strategy for chronic pain, moving away from pills and tools, the alternatives. We split up the rest of the video into twelve mini-sections because if you suffer from chronic pain, Frances Cole’s work has suggested to us that there are twelve consequences of chronic pain, you’re very likely to be suffering from one or maybe all of them – things like physical inactivity, social isolation, sleeplessness, emotional problems, relationship problems, work-related problems, and there are twelve of these things. So, we’ve split up the rest of the video just going through each of those one by one and giving the doctors ideas of what can be done and, more crucially, on our website, we’ve got written information for patients which is in electronic format. It’s kind of crude because our website is kind of crude and basic, and that’s something that we want to work on. We slightly sort of grandiosely called it ‘Chronic Pain – The Answers’ and it goes through each of these twelve consequences of pain and gives the reader just things that we’ve cobbled together from online stuff and Cornwall-based stuff of what would be relevant to sleep for example, or to emotional stuff or ‘boom and bust’ stuff, the stuff that you, you know all about, but trying to bring it all together into one place.

Evans: Jim Huddy, Cornwall Clinical Commissioning Group Clinical Lead for Chronic Pain. Now the website address for those resources is a bit of a mouthful. So, I suggest you put ‘opioid prescribing for chronic pain Cornwall’ into your search engine. It’s well worth a visit. As always, 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 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. You can find all the resources to support the management of chronic pain including details of our helpline, videos, leaflets, all editions of Airing Pain and Pain Matters magazine at painconcern.org.uk. Now, last words of this edition of Airing Pain to Louise Trewern about her journey with opioids,

Trewern: I’m choosing not to be upset about it, because I think the doctors at the time that prescribed it were working with the information they had at the time. Now, of course, we know that long-term use of opioids doesn’t help chronic pain conditions at all. And so, I’m trying to get the message out there that there are other ways of coping with your pain other than just taking painkillers.


Contributors:

  • Dr Srinivasa Raja, Professor of Anaesthesiology and Critical Care Medicine and Neurology at the Johns Hopkins University School of Medicine, Maryland, USA  
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group 
  • Louise Trewern, Vice Chair of the Patient Voice Committee at the British Pain Society 
  • Dr Jim Huddy, Cornwall GP and Clinical Lead for Chronic Pain at NHS Kernow Clinical Commissioning Group. 

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) iasp-pain.org.

Transcription by Nathalie Johnstone

Peer Support. Join the community

“Having chronic pain is very lonely.”

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Everything you need to know about how to live with chronic pain

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Rethinking long-term pain management

This edition of Airing Pain has been supported with a grant from Kyowa Kirin donated for this purpose. 

The opioid crisis reached its peak in the United States in 2017, where addiction and overprescription have led to 218,000 deaths from prescription overdoses between the years of 1999 and 2017. The side effects of opioids can affect the day-to-day activities of people managing long-term or chronic pain, yet society as a whole has yet to fully evaluate the relationship between opioids and addiction.  

In this edition of Airing Pain, producer Paul Evans talks to two leading pain specialists. First off, Paul Evans meets with Dr Srinivasa Raja, who discusses opioids effects on the body’s opioid receptors and how the human body processes pain. Dr Cathy Stannard then talks about the increase of opioid prescriptions in the UK and how the opioid crisis in the United Kingdom developed. 

In the second half of the programmePaul speaks with Louise Trewern, a chronic pain patient and patient advocateabout opioids detrimental effect on her quality of life and how she was able to transition towards more effective methods of chronic pain management. 

Finally, Paul sits down with Dr Jim Huddy, a GP in Cornwall, who explains how the medical community is re-evaluating the relationship between opioids and chronic pain. 

Issues covered in this programme include: Cancer, chemotherapy, exercise, fibromyalgia, medication, neuropathic pain, opioids, painkillers, physiotherapy, prescription for pain, psychology, side effects and dosage.


Contributors:

  • Dr Srinivasa Raja, Professor of Anaesthesiology and Critical Care Medicine and Neurology at the Johns Hopkins University School of Medicine, Maryland, USA  
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group 
  • Louise Trewern, Vice Chair of the Patient Voice Committee at the British Pain Society 
  • Dr Jim Huddy, Cornwall GP and Clinical Lead for Chronic Pain at NHS Kernow Clinical Commissioning Group. 

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) iasp-pain.org.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

On Tuesday 7 July 2020, Airing Pain returns, with producer Paul Evans looking into opioid medication for chronic pain. Tune in as he speaks to two world-reknowned pain specialists, a GP and a chronic pain patient who maganged to reduce her medication, looking into the opioid addiction crisis, the rates of prescribing and how effective these drugs really are for dealing with chronic pain.

Watch the trailer above for more details

Contributors:

  • Dr Srinivasa Raja, Professor of Anaesthesiology and Critical Care Medicine and Neurology at the Johns Hopkins University School of Medicine, Maryland, USA
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group
  • Louise Trewern, Vice Chair of the Patient Voice Committee at the British Pain Society
  • Dr Jim Huddy, Cornwall GP and Clinical Lead for Chronic Pain at NHS Kernow Clinical Commissioning Group.

Available to listen on our website, or download from wherever you get your podcasts.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

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In Spring of 1995, the first Newsletter of the Pain Concern (UK) Lothian Group was issued. The newsletter was printed at a volunteer’s house on ordinary copy paper and had articles from clinicians and patients. Demand grew and by Issue 22 (Autumn 2000) it was Pain Concern News and had contributions from around the UK. Issue 26 (December 2001) was the first to be professionally laid out and printed using our partners, Creative Link, in North Berwick. Glossy paper and a touch of colour on the front page warranted a rebrand and the title Pain Matters was born. Issue 41 was the first in full colour with an article by regular contributor Margaret Graham on how visualising colours affect mood. Issue 50 was a landmark with a then radical article on medicinal cannabis and a brazen close-up of a cannabis plant on the front cover. We now regularly invite clinical teams to guest-edit their own edition, so readers get news direct from the coalface of pain management. There is a digital edition, an email supplement and hardcopies are distributed to pain clinics across the UK. It has come a long way from a volunteer printing a few dozen copies in their house. Thank you for reading and supporting Pain Matters!

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

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Our new issue, Pain Matters 75, is due to come out on Monday 25 May. As this issue marks the twenty-fifth anniversary of the very first Pain Concern (UK) Lothian Group newsletter, later to become the Pain Matters we know today, we have gone back to where it all started. The Lothian Group was a patient support group set up by members of the Astley Ainslie Hospital pain management programme, so it seems appropriate that this issue is being guest-edited by the Chronic Pain Management Service from NHS Lothian, based at the same hospital.

This issue’s theme is compassion-focused therapy, with the team showing the different ways they use compassion as part of a holistic pain management approach. A lot has changed in the world since our last issue, and here at Pain Concern, we think that compassion is something which we could all use more of at the moment.

Buy or subscribe at painconcern.org.uk/product-category/pain-matters.

Or why not try our digital version, available at pocketmags.com/pain-matters-magazine.

Also, our Pocketmags sale is still running, so if you buy an annual subscription by midnight on the 25th May, you will also be able to choose any 4 back issues. In total, that is 8 magazines for the price of a one year’s subscription – only £6.99!

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

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Inside issue 75: The twenty-fifth anniversary issue of Pain Matters sees us return to the hospital where it all started, as NHS Lothian take the helm. This issue’s theme is compassion-focused therapy, with the team showing the different ways they use compassion as part of a holistic pain management approach.


This issue of Pain Matters was guest-edited by the NHS Lothian Chronic Pain Management Service, based at Astley Ainslie Hospital, Edinburgh.


View Pain Matters Subscription Options

Buy or subscribe at painconcern.org.uk/product-category/pain-matters/.

Or why not try our digital version, available at pocketmags.com/pain-matters-magazine.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

Visiting the forefront of research into pain conditions

As research for a Covid-19 vaccine is a priority for the scientific community, this edition of Airing Pain focuses on the roles of researchers, and in particular the many disciplines that come together to increase the understanding, and therefore the management of chronic pain.

Available to listen to from 5 May 2020 here or download from wherever you get your podcasts.

Watch the trailer below:

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

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