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- [00:11]
A
Hello and welcome to the Ms. Trust Podcast. I'm Helena and I work here at the Ms. Trust, a charity that's here for the Ms. Community for every Ms. Every day. We're here to provide information and support to help people navigate Ms. Every day. We're also working to drive excellence and equity and consistency across Ms. Treatment and care. And we're powering research into the issues that matter the most to people living with ms, making sure that those insights are turned into real action. With me today is my colleague Gemma. She works in our health information team. Hi, Gemma. Hello.
- [00:51]
B
Thank you for having me back.
- [00:53]
A
It's really nice to have you. Today we are going to be talking about something that affects a lot of people living with Ms. Neuropathic or nerve pain. It can be unpredictable, intrusive and incredibly hard to describe. We've heard from many people in the Ms. Community who has tried to put this into words.
- [01:15]
B
Yes. So we asked our Ms. Trust Facebook group members to help us describe nerve pain in Ms. Several of you helped us, like Kathleen, who described how she experiences trigeminal neuralgia, which can feel like electric shocks through her face and can be set off by the simplest things like yawning or a cold breeze. Caroline also described how she lives with constant tingling pins and needles and stabbing pains.
- [01:41]
A
And Sally told us that nerve pain gets worse at night, especially in her leg and hip, and is a real challenge to stay positive. Karen described her symptoms as fizzy fingers, wet feeling hands and electric shocks that feel like crazy, like a crazy fetch ground ride.
- [01:57]
B
Others mentioned burning sensations, numbness, icy feet that aren't cold, fizzy fingers, hands feeling wet, electric shocks down the spine and even pain that feels like hot lava. It's clear that nerve pain in Ms. Is complex. It's unique to each person. It can be debilitating and it's often.
- [02:17]
A
Invisible and really so hard to describe. So that's why in this episode, we're focusing on what people can do themselves at home to ease that pain. Pain and take back some of the control.
- [02:30]
B
Yeah. So we've spoken to two brilliant guests. Firstly, Catherine Dyer, who's a lead nurse in a pain management service. And also we spoke to Justin Stanfield, who lives with Ms. And teaches mindfulness. They'll be sharing practical strategies and calming techniques that can make a real difference.
- [02:49]
A
But before we dive in, Gemma, you recently updated our pain information on the Ms. Trust website. Why did we decide to do that now?
- [02:58]
B
Yeah, I think we wanted to make sure that our resources reflect the latest clinical guidance, the latest research and Also real life experiences. Pain is such a personal and complex issue that affects many people with Ms. And we know that medication on its own can't always get rid of nerve pain completely. So self help or self management approaches are really important too. So this is something we wanted to reflect in our health information and give people the tools to make changes that may help. I learned quite a lot from speaking to clinicians and people with Ms. As we'll hear shortly from Catherine Dyer. Managing pain is often a bit like a jigsaw, trying to put together all the little pieces, whether that's drug treatments, rehabilitation therapies, lifestyle changes or other coping strategies, to try and get to a point where your pain feels less intense and it has less of an impact on your life.
- [03:56]
A
Yeah, absolutely. And that's what this episode is all about, giving people tools and ideas to try out for themselves. So let's get started. First off, Gemma spoke to Catherine Dyer.
- [04:07]
C
So, hello. Today we're talking about neuropathic pain or nerve pain, which is a common symptom that can happen in multiple sclerosis. We're going to be focusing sort of on the self management side of things. So self management approaches, so things you can do yourself to help manage your pain as best as possible alongside sort of drug treatments that you might be on. So we're here today with Katherine Dyer. So Catherine works in the nhs. She is a lead nurse in a pain management service. So thank you so much for joining us. Katherine, would you like to introduce yourself and tell us a little bit more about your role in the pain management service that you work in?
- [04:44]
D
Yeah, so absolutely. Thank you and thank you for inviting me. So, as you say, I'm a lead nurse in a pain clinic in Norfolk. I've been a pain specialist nurse for, near enough 25 years, so I've got a lot of experience of working with patients and people who live with persistent pain problems. And the pain services are very different from region to region. So some will be attached to local hospitals, others are more based within the community. And the team that you might meet in a pain clinic is also very varied, but can include anything from medical doctors, specialist nurses like myself, physiological physiotherapists, psychologists, psychotherapists, occupational therapists and pharmacists, or any combination of any of those. So depending on where you are living, you may have different style services, but we all have a background in helping people who have long term pain conditions to try and help them to move forward with managing their pain for themselves in a more effective way.
- [05:52]
C
Thank you. That's a really nice overview of who might actually be involved in a pain management service, because some people might not have even heard of one and know that they exist. So that's a really helpful sort of overview. Can we start by talking about sort of what's happening in your body if you're experiencing nerve pain in ms?
- [06:10]
D
Yes, of course. So neuropathic or nerve pain in Ms. Comes largely from damage to the central nervous system, particularly usually the spinal cord and the brain. In people with ms, you may have heard of the term demyelination, and in that situation, the immune system attacks the myelin sheath, disrupting the nerve signal and causing pain. I describe that a little bit like the protective plastic coating that you might find around an electric cable in your homes or workplace. And at the same time as this demyelination process happens, lesions or scars directly affect those nerve fibers and stop the regular processing of pain signals. People with Ms. Also find that there are changes within the brain and there can be some inflammation of some of the nerve cells in the brain, again changing the way that our brains interpret or react to the information that those pain messages are sending. And in general, pain is transmitted in a sequence of excitatory, as in positive or inhibitory, as in turning something off, messages or signal, and that our body receives pain as an electrical piece of information, and our nervous systems transmit that information by turning up or down the volume of that information. And in people with ms, unfortunately, because of the changes to the central nervous system, these messages can sometimes become dysfunctional and lead to patients experiencing not just increased pain, but also different types of sensations which in themselves can become painful. So people with Ms. Can often talk about something called hyperalgesia, where, for example, numbness becomes painful, or patients describe dripping water or hot and cold, or crawling ants or creatures, for example, all of examples of differing ways that nerve pain is described by patients with people with Ms.
- [08:20]
C
Thank you. That's a really nice overview and I think you've sort of touched on this already. But what are some of the different types of nerve pain that people with Ms. Might experience? I know you spoke a bit there about what some of them might feel like. So autosensations, for example, are a very common one that we hear about. So.
- [08:38]
B
Yeah.
- [08:38]
C
Can you talk through some of the.
- [08:39]
D
Different types that you come across? Yeah. So there are a number of nerve pains very common in people with Ms. The most common one we see in a pain clinic is probably trigeminal neuralgia or facial pain, particularly linked to the trigeminal nerve, which is the nerve that affects the usually one side, but can be both, but usually one side of the face in a really exquisite, miserable way. And the trigeminal nerve has the, it actually branches out and it affects anything from the jaw up into the nose or up into your forehead. And the really, really miserable thing about trigeminal neuralgia is that it's affected by the most simple of tasks, be that eating and drinking, cleaning your teeth, but also things like speech and laughter and all of those things that you might think become are very normal activities and they're easily exacerbated by things like cold weather or winds that you're not able to, you know, you can't change for yourself. Other nerve pains that you get, you might have heard things like barber's chair pain, Lahemides phenomena and bear hug. And all of these relate to differing types of electrical or nerve type pain, again related to those changes in the nervous system. And these pains can be so random and so individual to patients that patients will worry that actually there's something else wrong. So the pain described in the term bear hug is a sort of intense crushing type sensation that happens within the chest wall where the muscles, then the nerves between your rib fibers, your intercostal muscles go into spasm. And it feels for some people like they're having a heart attack and they can get wrongly or concerned that they're having a heart attack when actually it's part of that nerve pain that they're experiencing.
- [10:43]
C
Yeah, that's interesting. I think with this type of pain we often, it is quite confusing for people especially with sort of the strange sensation. Sometimes people don't even really think of it as pain. They're just like, oh, I've got this horrible numbness, like what's going on? So it's, yeah, it's interesting to hear about the different types that can happen. So we are going to focus more on sort of the self management side of things. But I just wanted to briefly touch on drug treatments for nerve pain. And so are there drug treatments available and how well, how well do they work?
- [11:14]
D
Well, as you say, if you were looking at a completely medical model, the mainstream mainstay treatment for any type of nerve pain, it's usually medication and you or your doctor will be able to look at guidance supplied by nice. So it's the government's effectiveness team who can sort of signpost you into what sorts of medicines may be suitable for you. And I'm sure you've probably heard, heard of the use of antidepressants so things like amitriptyline or duloxetine and of the antiepileptic medications, gabapentin, pregabalin, carbamazepine. And these drugs work very specifically on that electrical information in the nervous system. They dampen down the pain information that is transmitted. And so they are primarily in their first instance used for other indications in depression and epilepsy. But in the same way as for example with epilepsy, there is a over excitability of the nerve fibres in the brain, then the theory goes that dumping down other pain fibres is likely to have an effect on pain. There are also a few surgical or injection type treatments that particularly for trigeminal neuralgia can be used for some people. But those are something that are probably referred to fairly big neurosurgical units. The indications are quite limited, so you would need to seek specialist advice for those. I think the biggest problem with medication is the fact that the risk, there is a significant risk of side effects, particularly in people who are suffering with multiple sclerosis are often taking numerous medications for other aspects of their disease and completely unrelated medications for completely different conditions. And so any time you add, the more drugs you add or medications you add together, the more likely it is that you're going to find significant side effects.
- [13:25]
C
Yes, it's really important to consider the side effects as well. If you, if you are going to try a medication for nerve pain, how effective are they for nerve pain? Do they, do people find them, they work very well or are they best sort of alongside other sort of self management approaches as well?
- [13:45]
D
I think the reality is that they will, they will, they will only ever be part of the story. I think obviously there is clinical evidence that supports their use in nerve pain, but I think the reality is that if you're only looking at medication, you're probably going to be disappointed.
- [14:10]
C
Turning more to sort of the self management side of things and what people should be aware of and be thinking about. Are there any sort of triggers for nerve pain? Are there any things, is there anything that people might be surprised of or unaware of that could suddenly trigger their pain or make it worse?
- [14:26]
D
I think inevitably there are, I think there are external factors. So we talked with trigeminal neuralgia about cold weather, cold temperatures, cold drinks, laughing too much, all sorts of unusual triggers. I think the other thing to think about is other illnesses. So if people are run down with the flu, for example, they're more likely to experience a flare up of their nerve pain and external stressors. Unfortunately for all of us, we can't control when we get into a difficult or an unhappy situation. So our state of mind really has a big part to play. And I think the other thing that is of a surprise to people with nerve pain is that sometimes there is no rhyme nor reason, unlike mechanical or sort of joint or muscle pain. You know that if you do too much activity in the garden, for example, it's likely that your arms and your back might ache a little bit by doing too much. That sort of makes sense. So if you're worried by that, you reduce or avoid or cut down on the amount of activity that you do. But what I think sometimes is very difficult with nerve pain is that there is no warning, sometimes it just happens. And that in itself becomes a, that in itself becomes, makes it difficult to manage because you can't plan for it, you can't preempt it in the same way. So I think, think that has an element of it as well.
- [16:13]
C
That's really interesting to know. So how important are lifestyle changes when it comes to managing nerve pain? Could you talk through any sort of strategies or approaches or changes that people could make that might help to ease their pain?
- [16:26]
D
Yeah, and managing lifestyle is really important. And I think, although obviously we're focusing on nerve pain for people with Ms. Today, it is also really important to remember that as part of ms, many people will also suffer, suffer with many other types of pain as well. Particularly thinking about those people with Ms. Where their mobility is reduced and they suffer with painful spasm. Then on top of the reality of the nervous system creating the nerve pain is that mechanical pain also becomes part of that picture. And so the mixed picture is really important to remember as well. In our pain clinic we utilize the analogy of a jigsaw puzzle to try and help people who live with long term pain, how to develop lifestyle or self help elements like pieces of a jigsaw so that things like exercise, movement, psychological well being, medication, injections for some can all be parts and pieces of those jigsaw. But we also know that if you do too much of those things, then the jigsaw is, you know, the, the jigsaw is impacted. So it is really important to think about physical activity, movement, posture, positioning, all of those will impact on your pain. And it's very true in life, isn't it, that too much of anything is usually a bad thing. And if you rely on one way of managing your pain or, or any situation, then if for whatever reason that way fails, then you're left with not much else to help you manage your pain. So it's really important to see that as a mixed picture.
- [18:20]
C
That's interesting. And I like the sort of way you refer to it as a jigsaw with lots of different pieces that sort of can all help to improve your pain.
- [18:28]
D
Yeah. And so in that jigsaw puzzle, we've talked about some of the pieces, but it also is important how they join together. So something like exercise and activity is really important for living with Ms. And in fact, exercise and activity is really important to all of us. And we know that our skeletons and our muscles and our joints work best if they can move and they don't become deconditioned. And so exercise or activity is really important. And it can also have that really important psychological or emotional benefit as well. But the key with exercise and activity is that for many people, when they're suffering with persistent pain is they'll go back to remembering when I was younger or when I didn't have MS, for example, I used to be able to run 10 miles or I used to be able to, you know, whatever. The do some gardening or whatever is about trying to make sure that, that there needs to be a little bit of a reality check. So things like Pilates and yoga are all adaptable into situations where with people with reduced mobility or could be wheelchair bound, can be bed bound, any type of activity is really, really important. It frees up your joints, it frees up your muscles, it helps your internal organs. So we know that our bowels work better, our lungs work better, and for many of us, it gives us a bit of a psychological boost as well, because we're doing something we're not sort of laid or sat ruminating over really struggling with pain. So really, really important. Pacing is something that I think we all think we do, but probably we don't do it as well as we possibly might. So the idea of pacing is that rather than doing everything all in one go, we should, in an ideal world, break it up into smaller chunks of activity to try and ensure that we don't do too much. For example, if you think about an activity, say you've got a pile of ironing to do. Somebody will try often to get through that pile of ironing because they just want to get to the bottom of it. We often stop doing things because we have to, because we've got to go and pick the children up from school, we've got to go to a hospital appointment, or because the pain tells us that we've got to stop and we Know that within the nerve fibres in the body and those pathways that by the time your brain has picked up the message of I've got to stop right this minute, I'm going to collapse in a heap because I've done too much. That we know that those excitatory fibres have gone bananas by that point. They are overexcitable. And so by trying to reduce that down and by doing little and often you can do that is that you find you, you maybe don't flare up your pain as much. The difficulty with pacing is that most people who live with persistent pain feel that they already don't do enough. It goes back to that I ought to, I should, I must. And with pacing it's really important to, to take on board the length of time it takes you to recover. So if you do an hour of ironing and you crash and have to lay down for an hour afterwards, that ironing actually took you two hours. It didn't take you one hour, it took you two hours. And actually if you were to break that up into chunks, you probably find that you would be able to do the same amount of ironing in probably about three quarters of the time. And then that's where you create that little gem of a chink in your hour where you can do something that you like to do, something you want to do because you've bought yourself some time and some energy.
- [22:44]
C
Thank you. That's really, really useful. And yeah, I like what you said about not comparing yourself to previously because that comparison isn't very helpful at times.
- [22:55]
D
Yeah.
- [22:55]
C
So yeah, and it's good that there's a lot of, there's so many exercise exercises that are adaptable now as well. So yeah, yoga and plateaus are good examples of that. I think it's also important to touch on your sort of the men health side of things as well. So if you're living with sort of nerve pain in the long term it will, it can have a knock on effect on your mood, can sort of feeling low have an impact on your pain and make it feel worse. And do you have any tips for improving your, your mood as well?
- [23:27]
D
Absolutely. And spiraling mood is common, is very common in people who live with persistent pain. But I also think it's really important to remember that pain is a physical sensation, pain is not in your head and you're not making it up. And I expect many of you have been in healthcare settings or social settings where you've been made to feel like that. And I think that's really really important. So pain is not psychological, pain is not something you've made up and that you're just not coping very well. But it is really impossible, it is impossible to separate between the physical aspects of pain and the emotional aspects of pain. If we back to thinking about those nerve pathways and we think about those excitatory or those inhibitory pain pathways, all of those are often related to fluctuations in emotion, be that positive or negative. So it really is important to address that. And I think that the most important things with thinking about how to regulate your mood is to try and think about yourself, to think about being the kind and compassionate person you probably are in the advice you give to everybody else, but making sure you take some of that advice. And if you're looking at your daytime routine and you're trying to plan or pace your activities and think about and prioritise, you know, what it is you would like to do today, for example, important to make sure that you fit in things that you would like to do, that you enjoy doing, rather than just focusing. Sometimes when we see patients who are living with persistent nerve pain is they go back to feelings of I should do, I must do, I have to. In looking at when they're prioritizing what they're doing during the day. And it was really, really, really encourage people to look to the positive side of that, of adding in, taking out one of the should or musts and putting in something I would like to, whatever that is and everybody so find out what those important things are for you. Be that time in the garden, be that sitting in the sunshine, be that watching something on television, whatever that is, and plan those positive things into your day or you, your routine.
- [26:07]
C
Yeah, I think it's sometimes you think, oh, you think about the things that you really, you really need to do, but actually you need to look at, hang on, what do I want to do when I'm actually able to do it? So really good advice. So I wanted to talk as well about sort of relaxation and distraction techniques. Can they help with managing nerve pain? And do you have any sort of examples that people could try?
- [26:27]
D
Absolutely. So if you remember again, those nerve fibers that inhibitory, that excitatory pain pathways, nerve pain is definitely impacted by relaxation. If we think about our shoulder muscles, we think that our shoulder muscles are really, really, really very tense. And we think about pain, the tension gets worse. And if we don't address the tension, then the tension gets worse again. And I'm sure we can all remember times when that's happened. I think the Difficulty is with relaxation. Is that the term relaxation puts into our minds a certain picture and it's usually one that we don't like. It's usually one that we think, well, I tried, you know, running water, you know, running water or listening to dolphins singing, or sitting on a, on a, on a, on a beach eating a bar of chocolate. And lots of people struggle with relaxation because their brains are still doing the bit, as we've just talked about, of I should, I must, I have to. I haven't got time to sit down, I haven't got time to. I haven't got time to. So it's about finding the right type. There are numerous types of relaxation and just because you don't get on with a, a podcast that plays you lots of nice music where they, there's lots of running water, for example. You know, find one, it might be one there where somebody who finds verbal visualization techniques really helpful or even something like mindfulness. And mindfulness is something that plays a very big part in our pain clinic. So mindfulness is trying to, rather than move your body and your body's thoughts away from what you might do in the future. And what you were doing in the past is, where are you now? What value can you get out of being in the present moment? And mindfulness can really help that. It can calm those excitatory pathways by using inhibitory chemicals that dampens down that electrical information. So you can use mindfulness in pain. You can use mindfulness in all sorts of stressful situations, even in the, even in a traffic jam. I was in a traffic jam this morning and I either can choose to follow the sat nav that takes me in and around the roads of Norfolk, down the back alleys where I meet a petrol tanker coming the other way, or I can sit on the, on, on the, on the dual carriageway in the speed camera zone doing five miles an hour, but actually enjoy looking at the sky, the nature, realizing that I'm going to get there in the end and be at peace with where I am just at this moment. And that it's in itself can be like a relaxation and mindfulness you can find all over the place. If you look for apps, there are so many different apps. It takes minutes. Be mindful. When you boil the kettle, it gives you what, two and a half minutes, three minutes of calm time.
- [29:54]
B
Time.
- [29:54]
D
Don't use that time to unpack the dishwasher, send a text message, wipe the surfaces down, use it to be mindful and you will find that some elements of your, that Those inhibitory pathways will just dampen down that stressor or that pain, for example, that you're getting at that time.
- [30:12]
C
Thank you. That's really, really interesting. And yeah, mindfulness is, is a big one. I think that there's lots of resources available now for, were there any other destruction techniques people could try as well?
- [30:24]
D
I think with distraction is really important. And so distraction can be anything from things like tens, machines, but also distraction in the wide sense is things like, you know, watching something you enjoy on the television or having a conversation, having a, you know, a telephone chat with a friend. The important thing with distraction is also just to make sure that you don't overdo that technique. So if you always distract yourself from, from pain, for example, some people will be very overactive. So overactivity can be sometimes a distraction because you're, you're filling your mind with, I've got to do this and I'm going to do that and I want to do this and I want to do that. And your brain becomes overwhelmed in distracting itself from the pain. And at the time, then when those distractions aren't there, there can be a risk that the pain makes that like it rears its ugly head, if you like. Particularly, for example, say at night time when the world is much calmer, much quieter, and then the pain comes back to bite you a little bit. So again, it's about going back to that thing that I said of little and often. So distraction, yes, for a few minutes, within an hour, for example. But if it's. You only manage your pain by trying to distract yourself and pushing it away, then you might find that it can be negative as well.
- [31:57]
C
So it sort of goes back to what you said before about the jigsaw and having those lots of little bits that you can try. So you're not always trying the same, the same thing, yes. Just moving on a little bit. So you spoke at our, at the Ms. Stress Conference earlier this year and you and a colleague spoke about some research around virtual reality and its potential to improve pain. I wondered if you could just talk a little bit more about, about this research.
- [32:20]
D
Within our Pain Clin Clinic, we are beginning to use virtual reality because virtual reality can take us to situations where we can't necessarily get to. So, for example, when you're thinking about relaxation, it can be very difficult, for example, to try and help people who would like to learn about relaxation. It can be very hard to do that in a NHS clinic room where, you know, the paint is peeling off the wall or the furniture looks like it, you know, has seen better days. And to then ask somebody to try and find themselves in a relaxing situation can be very difficult. But we do have, and we are using, within some of our education groups, we are using virtual reality goggles to try and create people an environment where they feel able to relax and that allows for people's differences. So people who would like to be on a beach in Bal can be on a beach in Bali. And those people who would prefer to be in a, in a rainforest or a different setting can be really helpful because you can start to help people to expand and think. And we know that our brain can moderate, moderate again using those, those excitatory and inhibitory pathways. So if you, if patients tell you that their pain is better in a, in a warm environment, for example, then if you can try and help patients using virtual reality to create a warm environment. The NHS doesn't allow us to put people on a plane to Bali, but it does allow us to create that situation in a place where at least then something like relaxation might help.
- [34:10]
C
That's really interesting that that's, it's actually something that's starting to be used in your clinic. That's amazing. So I kind of want to just focus a bit more about, about, on your pain clinic and I wondered if you could maybe talk about what would happen if you were referred to a pain clinic, what people can expect and is there any sort of criteria that people need to meet in order to be referred to a pain clinic?
- [34:33]
D
Okay, well let's start with that one first because I think it's, as I said earlier, all pain services are slightly different, so there may be differences between regions. So I'm going to talk very much from my personal experience, but we accept referrals from any healthcare practitioner. So it doesn't have to be your gp, but it needs to be somebody who knows you quite well, I think. And I think the important thing is to understand what a pain clinic is likely to have to, likely to be able to offer in our pain service. Our starting point is to offer a patient who's referred to us a discussion and a sort of assessment of the pain situation that they're in. That is a physical examination for some people, but also there's an awful lot of questions of talking about how pain affects you physically and emotionally. That will either be done in our service, either by a senior non medical practitioner such as myself, but also one of our pain may also be one of our pain consultants. And what we try and offer is an understanding of why the patient or person sitting in front of us is in pain. In that sense, we try and put that into context of their underlying disease or whatever, but try and explain to them about the persistent nature of pain and that unfortunately not all pain conditions are going to go away the same way as we would think they might. And at that point we would then try and create a management plan with the patient, we would rationalise medication. And I would emphasise that the majority of patients that come to pain clinics probably find themselves discussing their current medications and reducing and stopping the ones that aren't really having any benefit. We don't have special, special. We don't have individual drugs that are only available if you're under the pain clinic. We use the same drugs, but we probably have a bit more experience as to how and why they're likely to help and whether or not they're going to be useful. And at that point, then we have a wide multidisciplinary team. We might think that somebody's activity and exercise advice needs looking at, through our occupational therapist, our physiotherapist, we might recognise that people are really struggling with the psychological impact of pain. So we might involve our psychologists. We do lots of education programs. We run psychology based education programs, physical exercise and activity programs, sleep management programs, relaxation programs. And for people who are really struggling, we might offer a pain management program which is a combination of all of those things. So 10 weeks of about three or four hours a week, looking at exercise, activity, pacing, psychological effect, medication and all of those things combined, because often those bits, we go back to that jigsaw. The important bit is that if there are pieces missing from a jigsaw, we always know how frustrating it is when there's a missing bit. So we're trying to put those bits back together to try and help people move forward and take ownership of their pain, to understand that they can make those changes and that we're just there to support them.
- [38:20]
C
That's a really useful overview, I think, and it's interesting to hear all the different programs you do, and it just shows all the different elements that can actually affect, impact someone's pain. So that's a really, really useful to understand a bit more about what happens in a pain clinic. So does it take a while for someone to get to a point where they feel like they're managing their pain sort of well and it's the best they get to a stage where their pain is managed as best as possible? Is that quite a long process?
- [38:50]
D
I think everybody's really individual and I think a lot of that bases on previous experience of pain or experience of pain, the people around them. I think people are disappointed when they find we haven't got a quick fit. I think it depends on whether people have the understanding. A lot of patients will come to us looking for a fix. How are you going to make my pain go away? How are you going to fix it? What are you going to give me that makes it better? And I think those sorts of words can be difficult for people who are living with a long term condition. And pain is a long term condition in its own right. There are, the evidence would tell us that between about 30 and 50% of the population will suffer with some sort of long term persistent pain. So getting it better or fixing it is probably a difficult thing. And I think the time it takes is for people to understand how that looks. Some people will get, get that more quickly than others and it's our responsibility to try and put all of those things there in place and then hopefully then patients take that. But it is a lot about trial and error even with the best, you know, the best drug trials. Pain is a very subjective experience. How I experience pain will be very different to each individual one of you and therefore how do we objectively measure it? How do we actually know what works? Because we can't measure pain between two different individuals. So it's a management process, it's trying to help. Pain clinics are there, trying to nudge people along, a management plan if you like.
- [40:48]
C
I think yeah, that's useful to know. And so people can be realistic about what you can actually offer. And a lot of, I suppose a lot is, is about the person sort of taking a bit of ownership and sort of gradually trying different, different lifestyle changes and things to sort of gradually improve that.
- [41:04]
D
Yeah, yeah.
- [41:05]
C
And we can't really talk about self management without acknowledging that some people might look to recreational drugs to help with pain management. So cannabis for example is something that comes up quite often. So how would you support people that have maybe taken that approach and how might that affect someone's Ms. For example, if they have decided to sort of use recreational drugs to help manage their pain?
- [41:31]
D
And I think the most important starting point is being non judgmental because you can. And when I think about recreational drugs I'm really thinking particularly as well as cannabis is things like alcohol, smoking. And it is really important, important to be non judgmental. And as a pain service I think we feel that that is absolutely key and many people do try things and if you are asking for the Current faculty of pain medicine guidance on the use of cannabis in persistent pain, then the supporting statement says that there is currently not enough evidence to support it. But that tends to be a fairly unhelpful stance to take when you're trying to help a person with pain try and navigate through their management plan. Because for some of them it really will make a difference, it will help and anecdotally they will say, you know, they will use cannabis and then they are able to relax or they're able to sleep and as a knock on effect, obviously that affects their pain. And so we would always want clinically to make sure that people are safe. So if people are using unsafe means of accessing drugs, for example, we would obviously want to safety net and maintain sort of safeguarding and making sure people are safe. But the reality is we hope that patients will at least be on honest because we'd like to work with them. This is about finding their own self management plan. And for some of them, whether we agree or disagree, recreational drugs, they may well be part, they may be part of somebody's jigsaw, they might, you know, we might not be able to sort of rubber stamp that and sort of support it necessarily, but it, it will be. People do have those, those thoughts and no one really knows. I mean I think the evidence around cannabis and the use of spasm. Is definitely there but at the moment, and again I think it's the subjectiveness of what does pain relief look like that's been very difficult to do in clinical trials of cannabis form specifically for pain. So honesty, I think honesty from a person in clinics, a patient experience is really, really important and we'll work with that and they won't be the first person or the last person to have tried, you know, all sorts of obscure, different ways of trying to manage their pain.
- [44:36]
C
Yeah, I think that needs non, non judgmental approach is really important as well. What would you say to someone who's perhaps listening to this and is really finding it hard to cope with their, their nerve pain and what sort of support they can get? What sort of support can they get and what, what can they do?
- [44:51]
D
I think the most important person, the first important thing is to make sure that you're, to make sure that you're safe, you need to talk to somebody. Now for some of you that might be contacting or just talking to your partner, your, and often those people around you will already be realising that you're in the situation that you're in, that you're really struggling, but they're Waiting for you to say, I can't cope with this or I don't know what to do, will you help me? So it might be that you talk to your family and friends. There is a huge amount of support. We would often say that your first port of call is your gp, but again, those are increasingly busy and difficult to get hold of. If you don't ring at 8 o' clock in the morning, you won't get an appointment or you can't get an appointment for two weeks. I think it's really important to make the best of what is now much more accessible via the Internet is national support, is things like local charities, national charities, the Ms. Trust versus Arthritis. There are numerous different, different charities who have lots of support on when people are really struggling to cope. There are some that are specific to pain. So there are living with pain, there is the pain toolkit, there is a huge number. And remembering that even within the NHS it's now possible to self refer to the talking therapy service. And although again, regions will differ, I do know for example in our region they have specific resources available to patients or people who live with long term conditions. But the most important thing is really making sure that you're safe. If you really are in a position where your mood or your mental health has become so low, you can look for the local crisis team. But also remember that NHS 111 option 2 will take you through to some psychological support, but reach out to people and talk to them is the main thing.
- [47:11]
C
That's a really, really lovely response and yeah, lots of support out there if you are really struggling with your, with your mental health. So yeah, thank you so much. That was all of my questions. Thank you so much for going through it all with me. Was there anything else that you maybe wanted to mention that you haven't or anything else you can think of that you think might be important to add in?
- [47:34]
D
I think it's about recognizing that pain is something that unfortunately healthcare professionals have limited input in and that you are all experts in managing. So if you are doing things, if I haven't mentioned them today, but you found something that is, that you're finding helpful as long as it's part of that jigsaw and as long as you're not relying on it so much or it's not costing you an absolute fortune, then that's okay too. So finding your own bits of your own jigsaw is really important and we, we can, we're only there to try and help you put the bits together.
- [48:16]
C
That's A really lovely, lovely note to end on, like finding your own, finding your own jigsaw. Thank you so much for going through all those, all those questions and I'm sure there'll be lots of people that, that listen to this and find something that, that's useful for them. So thank you so much for taking the time to, to do this today. Thank you.
- [48:32]
A
Thank you. You have now reached the point of the podcast where we would like to tell you a little bit about some resources that we have for people with Ms. And today we're talking all about pain. So the main resource that we would like to talk about today is our HS entry on pain. So if you head to our website mstrust.orguk and go to the HSZ and click for P for pain and you can read all about types of Ms. Pain, what is Ms. Pain and what causes Ms. Pain. And of course there is also information about how Ms. Pain is treated and how you could try to manage it yourself. So as mentioned in the podcast, this has just been updated as well. So please head over to our hz, click P for pain and let us know what you think. Thank you. And next we spoke to Justin Stanfield who lives with Ms. And teaches mindfulness and he shared how mindfulness can help change the way we experience pain. I am here with someone I've spoken to before and I really been wanting to have back on the podcast for a while because I really enjoyed chatting with you the last time. Justin, we spoke about mindfulness in a whole podcast before and so we wanted to bring you back to talk specifically about mindfulness and pain. But before we start, for somebody who didn't listen to the previous podcast, would you just give a short introduction on who you are?
- [50:00]
E
Certainly. Yes. Hello, I'm Justin and I have Ms. Myself. I also teach mindfulness meditation professionally, but I've practiced it myself as well for quite a long time, actually longer than I've had Ms. And I do who generally use mindfulness for well being but have noticed some really interesting things around pain and have read a bit more and studied a bit more about mindfulness meditation and pain as well. So it's given me a better insight into what's going on when I perceive that my pain has changed.
- [50:33]
A
This is so interesting. So how do you think mindfulness change how we feel or perceive experience pain?
- [50:40]
E
That is exactly the words I was thinking of using today actually. You know, our experience of pain is what can alter our perception of it. To be clear, it doesn't remove pain, so it's not for Me ever something I could say, I've used it and it's a pain, you know, painkiller or pain remover. But what it can do through, for example, certain guided meditations or a bit of breathing is change the amount of reactivity I'm having in my head to the experience of being in my pain. You know, being in pain is obviously not something we like. We don't appreciate it, we don't want it. But sometimes a bit of our brain called the amygdala, for example, can almost escalate that experience of pain by thinking about it and reacting to it as this is distressing. So that's one of the ways that it helps. I think another one can be almost changing our focus of attention. And another meditator that I follow on social media who I think he's great and he's done some talks. He talks about anything that might be niggling us physical pain or emotional pain. You know, worrying about something is a bit like when you've. You've chipped a tooth, you know, or you've got a filling that's missing. Every five to 10 minutes, you sort of poke at it with your tongue to check. Oh, yeah, it does still hurt. Oh, yeah, my filling has still gone. And almost we, we use that metaphor when we think about pain and we think about. So I have neuropathic pain associated with my Ms. In a few different areas. And I know sometimes I do that sort of checking in to go, yep, still hurts today. Oh, I think it's worse than yesterday. In fact, it's worse than it was an hour ago. And that is very normal. It's a psychologically healthy thing to do. But at the same time, what we may notice is that we're focusing on our attention, on it quite a lot. So changing our attention. Because pain does demand our attention, as we would all know, those of us who experience it, mindfulness can train our attention to just shift away onto something else. So maybe the breath or for some people, they use visualization or a candle or something like that.
- [52:51]
A
That's really, really interesting. I think some of the feedback we've heard when we talk to people is sometimes if you're distracted during the day, you don't notice it so much, but. But then when you go to bed, it all kind of comes because that's when you're so focused on what you're feeling in your body.
- [53:07]
E
Yeah, yeah, absolutely. It's almost, you know, you can. When the room is quiet, you know, you can sometimes hear your own heartbeat. Can't you and you can, if you have something like tinnitus, for example, that will be more noticeable when it's quiet. And the same, I think, happens with pain. There's also this final way that I've noticed and I've looked at some research and it does, it does seem to be accurate, which is around just that secondary pain of them getting stuck in a train of thought of worry or cycling through fear even about pain. Like, you know, when will this ever stop? Am I having a relapse? How long has this gone on for? Or it's altered, my pain's altered. What does that mean? And what we sometimes call secondary pain is then a new type of suffering sort of layered on top of the physical pain as well. Mindfulness can help bring that to our awareness that we're doing that and help us to break the cycle if we, if we think we might be stuck in it. I'm not a neuroscientist and I'm not, you know, I'm not a medical professional so I absolutely do need to throw that out there. But one of, one of the things that I'm a bit of a geek for research and I read something about. So it's a part of the brain called the acc, the anterior cingulate cortex. The ACC is where it's associated with deciding whether physical sensations are pleasant and motivating or they're horrible and draining. So we have seen in some brain scans of long term meditators that there's an alteration in their ACC around how they perceive the unpleasantness of pain. So even if the physical pain is still there, so the symptom they actually have from their Ms. Is still present. This part of the brain, when it's activated, alters again how we, how we perceive it. It's really hard to think of having a relationship with pain, isn't it? But this is really what mindfulness I have seen has helped me to do is change my relationship with pain or I suppose to get really deep, altering my relationship with myself as someone in pain.
- [55:16]
A
It's interesting because some people that try a bit of mindfulness and I think we spoke about this when we talked before in is that you try it once and then you go, well, I don't know if this helps. How, how long would you say that you would have to like try, keep on at it to maybe start noticing that something is shifting?
- [55:36]
E
I mean there can be some instant, somewhat instant in terms of, I mentioned, you know, the distraction element of it, you know, anchoring our attention to something else. We also know that certain types of breathing focused upon during meditation can activate our parasympathetic nervous system, that rest and digest state, rather flight or fight. So that, that can actually alter our chemistry a little bit in the body and, you know, calm us down. And there, there can also be a somewhat quick result from just the act of a bit of meditation, creating some space, almost a buffer between the sensation we're having and the reaction I'm having to it up here. But over time, that certainly is. Is strengthened. I would say practicing even a few minutes a day day with something, you know, a guided meditation or practicing on your own just for a few minutes. Likely to see that building up over, you know, a couple of weeks if you practice daily. And for many people I know who also meditate every day and who do experience pain with other conditions, they often will tell me, they will know if they've skipped it. So, you know, lots of us who do teach meditation, you expect us to meditate, like for hours and hours every day. We're human too. We have jobs and families and dogs and all sorts of hobbies. So sometimes, you know, there'll be days when I do much less and some days when I do a little bit more. And there are some days here and there where I'll skip. I would say a good reminder to do it again when the next day comes around can be that presentation of a bit of pain and thinking, okay, what are the tools at my disposal? So I think I'd encourage people to think of this as one of several tools they've got. Got that if they were to, if they were to use it, it could be there in amongst other things like, you know, pain relief and physio or other activities too.
- [57:33]
A
I thought it was interesting what you were saying there about breathing because obviously where my mind goes is we all, even if we haven't gone through childbirth ourselves, probably seen on TV at some point where some woman is going through childbirth and it's like, breathe through it, breathe through it, through it. So breathing. Could you talk a little bit more about what you just mentioned there about how breathing can fit into mindfulness? Because that's interesting.
- [57:57]
E
Yeah. I mean, a common practice in mindfulness is what's referred to as breathing into the pain. And I think this might be where childbirth has got a similarity. You know, breathing into the pain, again, it doesn't physically remove it, but it sort of softens our body, perhaps our mind's reaction or resistance to it. If you can think of something where, you know, you're about to have something painful done at the dentist. Dentist. Or you're going to have a plaster ripped off your arm and you know it's going to be a bit sore for a moment. We almost brace against it happening in much the same way that we could brace ourselves against something that we know is going to happen and it's going to hurt a bit. We often can do that during the day with Ms. Pain, you know, neuropathic pain, for example, and using breath, using focus on the breath and breathing meditation. Meditations. Because it's so simple, by the way, you know, we need no equipment to do it. There's a very cheesy phrase we use when we teach mindfulness meditation, which is that, you know, we've always got it with us, the breath. So it's a great one to focus on, is that it can alter our physiology through some altered breathing and soften and be open to the pain, which can be counterintuitive as an idea because often we do want to push it away. We want to deny it or numb it and pretend it's not happening. But actually noticing the pain and perhaps being an observer of that experience rather than being consumed by it again, the breath can be a physical anchor. So here I am breathing in, breathing out with this sensation. So this sensation is my current reality is a different impact on our body, you know, our posture, our muscle tension than if we are going, this is awful, I don't want it sort of, you know, grr. I'm going to brace myself against it. So that in studies has shown also to have an altered perception of levels of pain. So again, doesn't remove it. But we know that when we are more open to it, it's not about being resigned to it, by the way, and just accepting pain. I'd always say to people, you know, if you know your body better than anyone else and you know, notice that pain has changed or altered or there's new sensations, obviously check that out with your Ms. Nurse, for example, or speak to another clinician. But otherwise, yeah, you might be able to over time, I think by using the breath, just resist it less that pain.
- [60:29]
A
Justin kindly is offered to talk us through a little bit of mindfulness techniques. And while we do this, I for people to be able to visualize whatever they want to visualize, we're going to not have our cameras going so people can do what they want to do here. But would you mind telling us what you are going to talk about now?
- [60:52]
E
Yeah, absolutely. So I have a guided meditation that I use myself and I do use with other people, which is about mindful awareness and breathing for or altered perception of pain, let's call it. So it's not about pretending pain isn't there. Rather, based on what I just said, it's almost opening up to the fact that pain is part of my current present moment experience and just maintaining a bit of an attitude of curiosity and acceptance around that, rather than trying to push it away or deny it. So it's easy to do. So I think people will enjoy it. But the concept can be a tough one to think about being compassionate and accepting about pain, because it's not our default position very often, is it? So this is a guided mindfulness meditation for pain awareness and hopefully some pain relief. This guided meditation encourages acceptance and curiosity rather than resistance or avoidance. And with practice, it can help change your relationship with pain, perhaps making it easier to meet pain with compassion rather than fear. So begin by finding a comfortable position. You can sit in a chair or you can lie down if you want. Whatever feels right for your body. Just allow your hands to rest naturally. So if you're sitting, let your spine also be upright, but not really rigid. A relaxed alertness in your back. If you're lying down, just release your weight into the surface beneath you. Take a deep breath in through your nose and let it out slowly through your mouth. Feel the body soften a little with that out breath. Just do that again twice more. Inhale deeply and exhale slowly. Now let your breath return to its natural rhythm. You don't need to change anything about your breath or really about your posture. Just observe bringing your awareness to your breath. Just your everyday breathing. Feeling the coolness as it enters and then the warmth as it leaves. Noticing the rise and fall of your chest or belly. And you know what? If your mind is busy right now and it's wandered off, that's totally up. Okay? Just let each thought come and go a bit like clouds passing in the sky, but always coming back to your breath. Now gently bring your attention to the area of your body where you are feeling pain. There's no need to fix, to fight or to judge it. Just observe it as if you're a curious scientist. Notice the qualities for a moment. Is the pain sharp? Is it dull, pulsing or tight? Does it move or is it still? See if you can soften around that pain. Imagine your breath flowing to that air. Not tightening around it, but making space for it. As you breathe in, imagine the breath gently expanding around that sensation. As you breathe out, imagine releasing some of the tension or Resistance. You might find this challenging. That's completely normal. Just notice whatever is present, even noticing your resistance is part of this practice. If at any time the pain feels overwhelming, shift your focus back to your breath. Just let each inhale and exhale be a safe, steady place that you can return to. You're not trying to block the pain, just balancing awareness of it with a softer, calmer anchor in the breath. Now gently say to yourself, this is a moment of discomfort. Discomfort is part of being human. I'm here with myself. Let the words land in your body like a hand placed kindly on your shoulder. This is a moment of discomfort. Discomfort is part of being human. I'm here with myself. Take a few final breaths, noticing your whole body now. The places that feel okay, the places that feel neutral, and the places that feel difficult. Just let all of it be here, held in your awareness. And when you're ready, just open your eyes, take a moment to reorientate yourself and maybe notice how you're feeling now compared to when you began. Thank you. This guided meditation is really useful for when you're on the go. So if you're noticing pain and you might be parked in the car waiting for a family member to head back and you've got five minutes, use it then never when driving. I should say another time might be, you know, tea break at work or just in the afternoon at the weekend. Weekend. And with consistent practice. This is one of those really straightforward tools that over time can become part of your daily routine.
- [67:27]
A
Thank you so much, Justin. That was brilliant. I, I thoroughly enjoyed that. It was very relaxing and, and I, yeah, I, I feel like mindfulness is, is something that we hear so much about, but it's, it's so interesting to learn more about it and I really hope that people listening to this podcast will. And explore it more. And we have a whole podcast, as I mentioned that, where we talk to you about mindfulness. But if people want to learn more, what are some resources apart from the podcast where people could go and learn more?
- [68:06]
E
There are some really good resources online. So there are usually some good apps that you can look at. There are several. One is called Calm. One is called Headspace. Another one is called Insight Timer, which has a really wide range, range of guided meditations on it from people all over the world. And if apps aren't your thing, and I must admit apps have a place for me, but they're not my main source of guidance myself, then a class would be really good. There are mindfulness meditation classes in most towns and Even villages, in village halls, sometimes in sports centers, community groups they also will do online versions of as well. They are almost always completely adaptable for people with different ability, so they certainly don't ever require you to sit with your legs crossed. They all really, you know, do what you need to do to adapt to it. So that would be my suggestion mainly. Other than that, I know there are some good resources on the Ms. Trust website as well on getting started with mindfulness, so absolutely have a look in your own community and check out some of those apps. I'm not on commission from those apps, by the way, but they are apps that I do have on my phone and that I do use from time to time myself.
- [69:24]
A
And we'll link to all of those in the show notes as well. Thank you so much, Justin. It's been absolutely lovely to have you on the podcast again.
- [69:32]
E
Great, thank you.
- [69:34]
A
I hope to see you soon again.
- [69:37]
E
I hope so too. Yes. Thank you very much for having me along.
- [69:39]
A
Living with Ms. Can be overwhelming and a quite lonely experience at times. And looking for information can send people down rabbit holes of inaccurate, contradictory or just even plain wrong information. And this is where the Ms. Trust Helpline comes in. So today got a little bit of a treat for you all because we are introducing the voices behind the Ms. Trust helpline. Simon, Flora and Corinne. They're the people who pick up the phone, answer your emails and social media questions to help make some sense of Ms. Thank you all so much for being here with me today. Let's start with some quick introductions. Simon, Flora, Corinne, can you each tell us a little bit about yourselves and what brought you to the Ms. Trust?
- [70:24]
F
I'm Simon. I got a background in librarianship in public libraries and then worked in several charities before I came to the Ms. Trust.
- [70:34]
A
And Simon has been here for quite a while. How long is it now, now, Simon?
- [70:38]
F
It's just coming up to 25 years.
- [70:41]
A
Wow. And things have changed quite a lot during that time, I gather.
- [70:45]
F
A huge amount, yes, in the Ms. Trust and in the world of Ms. In general.
- [70:51]
A
And how about you, Corinne?
- [70:54]
D
I've been here six years. Helena and I decided to join the Ms. Trust because I thought I could help people. Very much like helping people get the information they need. And my grandfather had Ms. As well. Primary progressive Ms.
- [71:08]
A
Thank you, Cory. And finally, Flora.
- [71:10]
B
Yeah, so I've been here only four.
- [71:13]
A
Years.
- [71:15]
B
And I have quite a wide ranging information background, working on different charity services and on helplines and I worked at neurological charity before this.
- [71:32]
A
Well, thank you all so much. For chatting to me today. So let's start with some basics about the helpline. Who can actually call the helpline?
- [71:41]
D
Corinne Anybody can call the helpline. Helena People that are experiencing symptoms of ms, we talk to many people that have different symptoms happening, so pre diagnosis. We also talk to people that have been newly diagnosed and are looking to find information about Ms. This or have got quite specific questions really. We also speak to family members, so friends, colleagues, parents, families. Actually we have been contacted by other health professionals as well and social prescribers and social care professionals as well. So anybody can call us and we'll do our best to help and find the information you need.
- [72:22]
A
And what kind of questions do you normally get, Simon? I mean, I'm guessing there will be quite a difference in the topics.
- [72:32]
F
Yes, it's very wide range because Ms. On one hand is a medical condition, but the lived experience of Ms. Is far more complex than that. So the majority of questions are probably around symptoms and diagnosis and before diagnosis, people concerned about whether their symptoms might be Ms. Then the specific symptoms and pain and altered sensations, fatigue are probably the top three that come through there. But we get questions about benefits, work, housing, the whole, a whole range of topics where Ms. Can affect life and can alter the information that people need to find their way with the condition and flora.
- [73:17]
A
How can people contact the helpline?
- [73:19]
B
On the helpline you can connect with us over the phone or we also have an email inbox for messages and also through Facebook you can send us a direct message or connect over our Facebook page.
- [73:39]
A
My parting questions to all of you would be because you talk to somebody, so many people with Ms. And so many different types of people with ms, what's the one thing you'd like to share with people affected by ms? Who should start? Shall I, Corinne start I would say.
- [73:57]
D
To people to reach out to their Ms. Nurse, also to look to other health professionals if they need support in terms of self management, in terms of terms of reaching out to an occupational therapist or a physio, really looking to look after yourself and rely on other health professionals to get those tips for you and looking at how you can manage your symptoms.
- [74:24]
A
How about you, Simon?
- [74:26]
F
I would say, as you suggested in the introduction, that having Ms. And dealing with the challenges of Ms. Can leave you all at sea. It's not something that's you've often had any sort of preparation for. So if you don't know where to turn, we are a place to turn to. Ms. Isn't a condition which offers easy solutions and we don't provide easy solutions, but we can sort of give you the information to have properly informed conversations with the people who can give hands on help and signpost you to other organizations that might be the right people to help you deal with your situation. So if you don't know where to turn, turn to us.
- [75:08]
A
Thank you, Simon. And how about yourself, Laura?
- [75:12]
B
Yeah, I think one thing that's quite important to think about is often symptoms of Ms. Can be quite invisible to others and people with Ms. Are often living with a lot more going on in the background than those around them are aware. So whilst you might be doing your best to kind of deal with it and manage it, but it can be really helpful to talk to people that kind of understand the condition. And even just having a chat can be helpful for you even if there's not all the answers because you haven't really had that opportunity to speak to others that understand and have insights into the condition. Don't hold it all inside.
- [76:05]
A
Fantastic. A piece of advice there. I think you guys are amazing and I'm so happy to be working with you and having had the pleasure of working with you for quite a few years, some more than others. So I just want to say thank you so much for chatting with me today and absolutely everything that you do for the Ms. Trust and for people with Ms. So I'd like to end with a little bit of appeal here for the fact that nobody should feel alone with the unknown when it comes to Ms. So if you donate today, you can make sure that people receiving a diagnosis this Christmas or anyone having lots of questions this Christmas and beyond, have somewhere to turn for expert, caring information that they can trust. So please head to mstrust.org.uk Christmas to find out more. And thank you so much to Flora, Simon and Corinne. Thank you so much to everyone who helped us make this podcast and all the people with Ms. Who share their experiences and insights.
- [77:11]
B
Speaking of insights, before we go, we wanted to share a few tips from the Ms. Community on what helps them cope with nerve pain. So Caroline told us that accepting her symptoms as part of daily life and adapting her routine made a big difference. Difference. Sally finds swimming, physio and listening to podcasts helpful, especially at night. Jane uses yoga, relaxation techniques to reduce stress and being aware of and responding to temperature triggers. Judy says distraction is key. Watching tv, seeing family and staying busy help her get through tough days. And Karen, she uses humor and a bit of swearing to cope with the bizarre sensations Ms. Throws her way.
- [77:56]
A
I love that line. Last one tumor can go a very long way. But I think it's really important to know that there is help to get if you are living with pain and you can't cope with it, I think often people just assume that there's nothing that can be done. But I think, you know, from learning from what we've learned today from Catherine, you know, contact your Ms. Team or talk to your gp, because there should be something out there to help you ease your pain.
- [78:29]
B
And if you've got a question about ms, that could be things that we've discussed today, like nerve pain or anything else about Ms. Remember, we have our free helpline that's there for you. Call us on 0800-323-839. We're here Monday to Friday, 10am to 4pm, excluding bank holidays. And if it's out of hours, just leave us a message and we'll get back to you.
- [78:53]
A
And you can also come and chat to us on the socials. You can follow the Ms. Trust on Facebook, YouTube, X TikTok and Instagram for updates, videos and other useful content. And don't forget, you can find this podcast on Spotify, Apple Podcasts, Amazon Music and YouTube Music. And the video version of this podcast is up on YouTube. Do please get in touch with us and let us know what you thought of this podcast. We'd love to hear from you. And if you enjoyed this episode, please leave us a review and share it with anyone who might benefit. Until next time, take care and we'll see you next month for another podcast about pain. Thank you Gemma for being with me today.
- [79:35]
B
No problem.
- [79:36]
C
Bye bye.