A (3:50)

Brilliant. And we have had the Ms. Register on the podcast before we did one about smoking. But for those people who don't know who you are, should we just start off by. If you could explain a little bit what it is you do and why you do it, sir? Good question.

C (4:06)

So you introduced me already. I'm Rod Middleton and I'm what they call the CI. I'm the sort of chief investigator of the AKMS Register. I've been with it since the start. So we were awarded the grant for the Ms. Register in 2009, spent a year building the thing and then in 2011 and March 2011 we launched the UKMS register, which is really two things. It's a clinical study where participants and patients can give informed consent to have their clinical records securely and safely transmitted to us here in Swansea. And also a participant reported Outcome Register where we ask what we call validated research instruments, so questionnaires on a regular basis to the community to see and get a snapshot of what's happening with Ms. Over time. And as you can imagine, after 15 years we've got quite a good snapshot now and that encompasses so many things. If you think when I started doing this 15 years ago, we didn't really have much in the way of treatment for Ms. We still had beta interfere ones and things like that, but we hadn't seen this huge sweep of changes, particularly in relapsing, remitting disease, that have happened and since. So it has been a privilege to be involved with research, you know, that has actually made a difference to people's lives and what we've seen within the condition, but it's ongoing. There's still so much we still need to find out what's happening, you know, and various aspects of disease, such as sleep, are so important. So the broad sweep is good. We've got some more effective treatments now, but we've got a long way to go. And really understanding how the various symptoms, outcomes and everything impact Ms. Is really important. So that's what I've done over the last 15 years, is assemble a team of people to find out really what's happening with Ms. And how it's changing over time and really how it affects people with Ms. And their sort of management of the disease.

A (5:50)

And you do a fantastic job. And we will put links how people can sign up. I mean, I'm hoping that everybody in the UK is listening already are, but if you're not, go and sign up.

C (6:00)

I would appreciate that.

A (6:02)

So let's talk a little bit about sleep and nighttime symptoms. What data have you collected from people with Ms. About sleep and nighttime symptoms?

C (6:11)

So as we said, this is something that we've been lacking up till now. So at Christmas time, after this co creation with our brainstormers group, we put out a specific sleep impact questionnaire. It was called the Pittsburgh Sleep Quality Index. And what that is is about 17 questions that looks at all aspects of sleep from what time you regularly go to bed at night, do you wake up multiple times over the night? Do you sleep with a partner? Does that affect things? Do they snore? Do you snore? Do you practice what they call good sleep hygiene, that is you don't slee, look at your device before you go to bed and things like that. So it tries to take into account a very holistic view of how people sleep, regardless of the condition or lack of condition they may have. So it's a well validated thing that I think was originally launched in the early 2000s, if not before. And from that there's lots of studies out there that shows what a healthy inverted commas population is like who may suffer from sleep disorders. And they found that between, depending on how you count, 6 and 18% of of the healthy population have a sleep disorder of some sort. So if that's your baseline, almost a fifth of people have a sleep disorder, then it's unsurprising if you've got a chronic disease that that's going to be incredibly important to how you get on in your life.

A (7:27)

Yeah, that's an. We often hear people complain about sleep and certainly working in the world of ms, you do Hear an awful lot of people saying, how do I get a good night's sleep?

C (7:39)

Absolutely. And as everybody who's listening is no doubt aware, the most reported symptom we hear about in Ms. Is fatigue. You know, I'd say our data on the Ms. Register is more than 90% of people report that they have fatigue of some sort, be it very profound or whatever. It's not just a feel a bit tired, you know, it's a fairly fundamental fatigue people feel. And obviously sleep is a huge part of that. And part of the problems with studying sleep and Ms. Is disentangling. Is it the fatigue that causes the sleep issues or is it the sleep issues that causes the fatigue? And everything else, the biological processes that are going on beyond that, as well as everything else, psychological process, everything that happens in your life, it's a really complicated thing to get handle on. And that's maybe my excuse for not having got to this sooner, that we haven't properly looked at sleep because of all the other things that are going on. But it's obviously a hugely important part of people's lives. So that's why it's so important to us and obviously to our participant group and to our participants, why we start to get a handle on this. And the reason for asking it is to put a flag in the sand and say, right, we're actually going to properly look at this within our population. But then because we're a register, we want to repeat this again in a year and see if anything's changed over time, because that's really important as well. The sleep quality index is meant to encompass how you slept over the course of a month. Obviously there's 12 months in a year. So you want to see what is changing over time. So it's great to get, as a researcher, what we call cross sectional data, which is that sort of snapshot. What you really want to see is have things changed. And if things have changed, we can start to look at other. Because what the Register allows us to do is look at linked data. What other things have been reported over the period of time that may relate to sleep issues. So if we bring those things and we look at as a whole, could it be a different disease modifying therapy? Could it be a change in diet? Could it be the fact you had a UTI in the night that was forcing you to get up? So I should say urinary tract infection that you've got to get up and deal with that could be impacting the sleep. So if you can start to look at all these features. And what we should always do for people is look, as a whole, you are more than your disease, you're a person. So that's so important and you need to look at all the aspects of this. And that's what we try to do in the Register.

A (9:52)

And obviously in this podcast, we're talking about nighttime symptoms and there's so many different symptoms that. So is there anything we can learn from common nighttime problems and the impact?

C (10:02)

Well, what most people experience when they have a sleep disorder is a thing called restless leg syndrome, which a lot of people with Ms. May experience, but actually the general public can experience as well. And it's more prevalent in women than in men, which in a disease that mostly affects women is obviously even more of an issue when you think of Ms. Like that. So restless leg syndrome, sleep apnea, which is like an extreme version of snoring, you could almost say, you know, it's actually not taking a breath over time and that, that can quite often wake people up as well. So sleep apnea. And again, for Ms. Specifically, pain is a nighttime symptom and spasticity. So that sort of stiffness that people experience when they have Ms. As well, as well as insomnia itself. You know, again, in health, people experience insomnia all the time. So, you know, it's not a surprise that that's feature. So they're sort of major nighttime symptoms that we saw reported as part of the work that we've done in this. And again, that's not surprising given that the general public can feel that. But if you've got ms, all of those things, particularly pain, spasticity, are going to be particularly pronounced in Ms. Because they're symptoms that are experienced during the day. And you know, as we all know, if you're. When you're trying to go to sleep at night, your mind can dwell on exactly what you're feeling right now. And that's the kind of things you're going to focus on. So immediately, just within that, you know, the focus on pain and stiffness and spasticity with people's spasms and things like that are really important thing to manage as much as possible within. Within the disease? Yeah.

A (11:30)

Fantastic. And did you see if there was any sort of specific Ms. Details linked to the frequency of nighttime symptoms, like, I don't know, progression or how long you've had Ms. Or how old you are?

C (11:42)

So it's early days and I appreciate it's June and we did this December, but research is often slow in this way and it takes time to unpick everything that's in it. So we did find a couple of significant things within this. So, for example, whether people were in work or not seem to be related. And again, we need to disentangle that a little bit. Whether it's, you know, the fact that you're in work, you're more tired, you know, what's. What exactly is happening in there, or you're not in work, therefore you're not getting any sort of. There's a lot to sort of unpick within that. So employment seemed to be a significant factor within this. Whether you smoked or not seemed to be a significant factor that all this is to be published. So, you know, these are very sort of initial sort of looking at this, we think disability has a part to play within this as well. So increased disability seemed to have an impact on how well you slept tonight, which, given what I've just said about pain and spasticity, probably isn't surprising either, really. If you have got a significant amount of pain or you're unable to move real well, then that sort of lying in bed and sort of trying to relax in a comfortable position is probably affected by that as well. So, yeah, disability definitely seemed to have some sort of interplay with the quality of sleep people had. Anxiety and depression also actually seem to be a factor within this as well. And again, time in bed, the only person in your head is you at that point, so it's probably unsurprising. And again, as with many things in ms, and I'm going to use the word disentangle a lot, it's really difficult. We see a lot of anxiety and depression reported within Ms. So again, it's chicken and egg. What comes first? The sleep disorders and the issues around that, or a little bit of anxiety and depression and worrying about what goes on. So it's. I mean, it's really helpful to talk about because it does give an indication of how complicated and why I think it's not so well studied is because there are so many factors just within this to look at. What else can I tell you about? Unsurprisingly, perhaps the biggest thing was fatigue. So fatigue seems to be massively significant. So we ask on the registrar a specific fatigue instrument. It's called the Fatigue Severity Scale. And what we noticed was people with a higher fatigue severity scale had poorer sleep. So, yeah, they were the main things of significance we saw on our first pass of this data. So more work to be done, but I don't think they've said anything Controversial there. I don't think anybody would be surprised to learn that these things have an impact on how well you sleep.

A (14:10)

That's really interesting. And when are you hoping to have the sort of the report out?

C (14:15)

Well, we've submitted one to the big conference in ms, which is called Etrims, which is for us in academia. We're very keen on peer review. We want somebody else to look at our data to make sure that's rigorously checked and all the rest. And there is an amount of peer review when you submit data to ectrims. So there will be an abstract and poster at this year's ECTRIMS conference on that. And just to give an idea of the kinds of things we're talking about, almost 3,000 people answered this questionnaire the last time I asked it, which is a huge amount of data. We're ever so grateful whenever anybody takes part. The sleep quality index is measured on not good sleep, which is you score less than a value, and bad sleep, which is you score over a value. And more than three quarters of the population of people with Ms. Indicated that they had bad sleep. So this is a significant problem that's going to be interest, of interest to people with ms, researchers, the clinicians and everything, because all of this data can only help.

A (15:07)

That's really interesting. Yes. And once we had, once it published, we will link to it as well. If you're listening to this podcast, you know, you might be listening to it in the future. That's very confusing when you're recording this.

C (15:19)

It is, but it's. I think it's also exciting to get this kind of. Even if it is very sort of initial data. I mean, again, it's not controversial. We know people with Ms. Have sleep difficulties in some cases, but quantifying that sort of really trying to get accounts and a number and trying to understand what's happening is really important. And then to be able to look AT disability, specifically Ms. type, specifically whether you smoke or not, what other activities you have going on really can help. If we can come up with practical advice, as we did with the smoking paper, that can help a little bit or at least cause another researcher to really be able to get to the bottom of something, then I think that's only for the good of people with ms, which is the point of everything that we do.

A (15:57)

I know you were saying that you wanted to do another check in, in the future with people, so this question might be a little bit trickier because I was wondering about if there was any treatments or that the data show that's actually working for managing nighttime symptoms, but maybe that's not clear yet then.

C (16:15)

I think it's slightly unclear. I mean, you can give general advice in that, exactly as we said, that, you know, a little bit of exercise in the day where it's possible to do so is a good thing. And then the simple thing of practicing good sleep hygiene, you know, putting the devices away, you know, not causing too many things that cause you stressful, not drinking too much caffeine after a certain time of the day and all those kinds of things that you can do, it would be a good thing to do. Practicing a little bit of mindfulness is probably helpful as well. Sort of calm yourself down before you go to bed, which is good practice for all of us in some way, you know. So I think taking those fairly realistic steps and useful steps to not go into bed all excited and doom scrolling before you get there and full of caffeine or alcohol is probably, you know, a fairly sensible thing to do in order to maximize your chance of, you know, and routine is often good for sleep as well. Getting to bed at a certain time, waking up at a certain time and so you're, your body becoming used to that way of approaching sleep is really important.

A (17:15)

That's fantastic and I love everything you do. So I guess my final question would just be how do people sign up?

C (17:22)

They visit ukmsregister.org and you put in an email address and a password. You'll get an email from us, you validate the link and then you start answering questionnaires. And the ask is every six months. So in the spring and in the autumn you come back and you answer the questionnaires for as long as you can. We know people get bored, you know, it's boring answering questionnaires after a while. So if you want to take one off, that's fine, but come back and tell us what's changed over time. As much data as you can give makes a difference to Ms. Research in the uk. And the second way is if you're at one of our NHS partner sites and there are 52 at the moment, I think all over the country, you can sign informed consent, subject to you reading it properly, of course, and then you can commit your NS clinical record to the NS registry as well. And the linkage between those two things lets us know how people with Ms. Feel about the disease and from their clinicians, what's going on, because those things aren't always the same. So I think it's really important to get that difference in perspective as well.

A (18:12)

Fantastic. Thank you so much. This has been extremely interesting and we'll hope to chat to the Ms. Register again for more data.

C (18:21)

Thank you for having me. And I'd be delighted now if this.

A (18:23)

Was a commercial podcast. Here's the segment where you would normally find an advert, but as we're a charity, we don't do adverts. But we would love to take the opportunity to tell you a little bit about the resources that we have here at the Ms. Trust for people with Ms. And as we're talking about sleep issues and nighttime symptoms today, I would suggest that you head to our website, mstrust.orguk, which is filled with loads of interesting information. But today I'd like you to go and head to the HS and look at the SS for sleep. Now, you can also find lots of information of some of the individual symptoms that we might be discussing in the podcast today. So just look under S for spasms, for instance, or N for nocturia, and you'll find more about that as well. We also have a page that is specifically dedicated to nighttime symptoms, which I will be linking to in the show notes. And now let's move over to the next interview with Laura. Here with me today from Nottingham University is Laura Edwards. Laura has talked to our Ms. Trust conference and we wanted to invite her to come and speak onto the podcast where we're going to be talking a little bit about nighttime symptoms. But before we get into all that, Laura, do you mind to just introduce yourself a little bit and maybe tell us how you come about working with people with ms?

B (19:47)

Sure, yes. So I'm Laura Edwards. I'm a a researcher and a doctor working in multiple sclerosis. My clinical specialty is neurorehabilitation and I work at Derby Hospitals for my patient facing work and the University of Nottingham for my research. I've been involved in Ms. Research and clinical care for many years. I originally did my PhD at Nottingham University with Chris Constantinescu, and then I sort of kept the interest in Ms. I think it's a very interesting and important topic because it's so common, it affects people so differently, it can have such devastating effects, but also the fact that there are some phenomenal developments and advances being made which are absolutely transforming for some people. So it's a fascinating field of study and it's one where I really hope we can continue to make differences for people.

A (20:45)

Brilliant. Thank you so much for coming on to the. To the podcast and obviously nighttime symptoms. There's a lot of things to cover Here. So I think I've sort of tried to shape the questions into some sort of order that will make sense, but we'll see how. Well, if we can get a good night's sleep at the end of this, that would be good.

B (21:04)

Absolutely.

A (21:07)

So let's start. Why does Emma symptoms and like I said, there's quite a lot here. So spasms, pain or nerve discomfort often feel worse at night or when we're, even when we're resting?

B (21:19)

Yes, that's such a, such a big question, such a good question. And I think there's probably a few things that come into it and I'm not a complete expert, but from the reading and from what I know and what I've seen, I suspect it's a combination of things being worse and things feeling worse. So there's a lot of conditions where we know that the 24 hour cycle sees changes in how they affect people. So we know, for instance, that things like asthma and heart failure tend to get their worse in the early hours of the morning. Some things like heart attacks shortly after you wake up and things like depression, they are often really bad in the morning and then improve as the day goes on. And there's been quite a bit of research into some conditions, but really not as much in Ms. We all have a sort of this body clock. We all talk about the body clock, a little bit of the brain, suprachiasmatic nucleus, if you're interested, sitting in the hypothalamus. And that affects, that dictates our 24 hour cycle. And that's not just being asleep and being awake. It affects the, the hormones, the chemicals, the cytokines that we secrete, our body temperature. There's a really clear pattern in our body temperature every 24 hours, things like digestion. It's phenomenally complex. And we know Ms. Can affect all the different bits of the brain and the spinal cord and there can be lesions around there as well. So first of all, is that sort of body clock being a bit dysregulated by the very fact that there's ms? Secondly, sleep disorders, as I think the Ms. Register data suggests, sleep disorders are really common in Ms. So people are more likely to have disrupted sleep of all sorts of different kinds and so they're more likely to be awake, to be experiencing symptoms. Another point may be related to positioning and movement, what you're doing and what you're not doing. I think we're going to be talking a bit about sort of spasms and positioning later on and also medication depending on the time that people are taking their medication. So if someone is prescribed a medication, taking it three times a day, if you take it at breakfast, lunchtime and the evening meal, then there's obviously going to be quite a long gap overnight where the medication may not be being quite so effective. So think about the timing of medications as well. So these are all things that could contribute to them being worse and then in terms of things feeling worse. While the brain is very complex in some ways, it's also quite simple and it can only cope with a certain amount of input at one time. And that's one of the reasons why things like virtual reality are thought to be so good for pain. Because you've got this really rich, dense stimuli sort of coming in and just saturating what you're thinking about and experiencing. And obviously during the day we tend to be busier, there's more going on. But three o' clock at night and it's dark and you're by yourself, it's an incredibly lonely time. And so those gates to experience those stimuli, they're kind of wide open. So I think it's possible that even if the symptoms are the same, the way people experience them may be different.

A (24:47)

That's really interesting. And it makes a lot of sense. That 3 o' clock time, it's just 3am it's just the worst time, isn't it?

B (24:56)

Yes. It sucks. Yes. I mean, I did hear there was a lovely thing on social media that said, you know, when, when you're in that terrible place at 3 o', clock, just remember that people are already up and the bakers are preparing the donuts and the croissants for you. So, you know, just remember that they're preparing your baked goods for the morning. That's when the bread starts proving. So sometimes that helps a little bit.

A (25:18)

I like that. I think I shall take that with me when I'm having one of the 3am Awake times. What causes muscle spasms and stiffness during the night? Because we hear this a lot. That is worse during nighttime.

B (25:33)

Yes. And again, I think it's going to be a recurring theme. There isn't one simple answer to this. So forgive me if I blether on a little bit here. So obviously when we're in bed and when we're asleep, we're not moving so much. Whenever any of us sit in one position or lie in one position for too long, we get stiff. And I think if you're predisposed to spasticity, to spasms, then that's probably Going to make it more marked when we're asleep. In certain phases of sleep, our brain actually deliberately paralyzes us so that we don't act out our dreams. Because, you know, if you're having a slightly violent dream, it could be quite unpopular if you suddenly start punching out. Yes. So it is a sort of, you know, the natural repositioning that we do is suppressed in sleep. So there's that. I think there's also that really difficult balance in any chronic condition. But I think particularly with ms, there's that balance between not doing too little and not doing too much. And from what people have told me, that can vary on a day to day basis. So if you've not done enough, then your legs are going to be feeling stiff and so they may be more likely to spasm overnight. Particularly if you've done too much and pushed yourself, then that can also make things worse. So that's that really challenging thing of trying to get the balance right between how do I do just the right amount of activity and that might be different from what you did last week or what you're going to do tomorrow. I think there's also the fact that sometimes subconsciously we sort of try to tell ourselves not to move. So it may be that you've got a partner who gets very grumpy if you roll over in bed, or maybe you've got a cat who gets very grumpy if you roll over in bed. And so you're like, no, I need to stay in this position. And so that is going to exacerbate things. We talked about medications and how if you took your last dose of medication many hours ago, then it may not be as effective at that point. There's also a lot to do possibly with body temperature. There was a really interesting article, I think, in JAMA Neurology where it was a case report of a gentleman with Ms. Who noticed that at 2 o' clock in the morning, his leg, his bad leg suddenly got a lot looser and stronger. And I mentioned that there is this sort of 24 hour pattern of body temperature. And typically your body temperature is sort of at its lowest in the early hours of the morning. And so for him, obviously that coincided with things relaxing more. But equally we know that some people get stiffer when they're colder. So the fact that the natural body temperature is dropping, that may make things seize up a little bit more. And then there's also thinking about the sort of bedding that you're sleeping in, the position that you're lying in and I think it was Wendy Hendry. I saw brilliant podcast from her when she was talking about sort of the positioning and pillows between the knees and trying to get the right alignment and the right support. So I think, yeah, it's. Again, there's lots of different things to think about and yeah, probably isn't a. This is the same for everybody at all.

A (28:50)

Yeah. But there are a few things to try. I guess that's. That's a good thing to think about.

B (28:56)

Yes. I mean, you know, some people talk about doing the evening stretches, not doing anything too violent before bed, but sort of progressive mindfulness, relaxation. And obviously as. As we're doing now, as a lot of people do, we tend to become quite chair shaped over the day because we all spend so much time sitting at computers and desks. And some people have suggested that lying on your front. So prone lying can be helpful. Prone lying is the technical term. I like tummy time. I think that sounds a bit nice, but that just helps us really stretch out the front of our body where we have often been a bit hunched over. So just doing that for short periods, some people find that can be helpful as well.

A (29:36)

Interesting. Let's keep on the. You talked a little bit about body temperature. What causes some people feeling really cold and freezing in bed and then other people just feel intense burning. What's going on neurologically here?

B (29:53)

Yeah, so, I mean, I think often people describe that particularly affecting their feet, don't they, really unpleasant sensations, which can be very unpleasant. The most basic explanation is it's disruptive nerve signals and nerve functioning. It always strikes me as a bit odd because obviously it tends to be the feet that are affected. But you think, well, the Ms. Is affecting the brain. Why is this in my feet? And there are different theories. Some people think it's a particular place in the spinal cord. Some people think it's because the pathways from the feet pass through bits of the brain where you're more likely to get Ms. Attacks. But basically the signaling has got very messed up. So something that one might expect to experience, the sort of light pressure or touch or even no stimulus at all, just shoots off as this painful sensation. Sometimes it can also be what we call autonomic dysregulation. So our automatic nervous system, the thing that affects things like heart rate, blood pressure, sweating, temperature control, can go a bit funky in Ms. Again, to use the very medical term, it goes terribly funky. And so that can sometimes affect circulation. And sometimes we do see that people can, you know, you can feel someone's feet Feel terribly cold. I think the caveat with these things is that some of it can be a part of the disease and it's very real. But it's also, if something is new or different, it's making sure there isn't something else going on. So I think there's often with ms, there's this risk of diagnostic overshadowing. So you have a symptom and someone says, oh, that's your Ms. Deer. And it isn't always so. You know, I have seen somebody with Ms. Who had a blocked artery in their leg, so then their foot did get extremely cold and extremely pale and extremely painful. Something that obviously needs very different approaches. And similarly, if something is sort of hot and red, then you want to rule out things like infection, blood clots, but. And that's where sort of knowing your own body is so important. And, you know, also doctors listening to people when they say this isn't normal for me, which I know can be a challenge at times.

A (32:13)

Yeah. This next question is sort of on the same. Same lines. And it's something that we see quite a lot of people discussing enough on our social media. So this is something that we have heard people ask. Ask quite a lot of the time about when it comes to this keeping warm. And obviously we know that there are other things maybe at play at night time because you can have, you know, if you menopausal. There is nighttime sweats tend to happen then as well. But this question I know is from a man. So it might not be the root of menopausal symptoms that we go down here, but why are some people with Ms. Affected by excessive night sweats? Is this considered an Ms. Symptom or is there something else? Because there's been. Seem to be a little bit of conflicting messages that this person was getting from different health professionals.

B (33:01)

Yeah, I think I saw that on the Facebook and I thought this is interesting because you're right, it isn't classically, it isn't one of those things you think night sweats, ooh, Ms. But a lot of individual people do describe it. So you think, well, okay, is this an area where we need to do a bit more research and get a bit more understanding of what people are experiencing. So again, there have been a few fairly small studies done in Ms. And as I recall, the findings were more that actually sweating decreased the longer somebody had MS.4. But obviously this is never a universal thing. It's very different with individuals. I think, again, there's that sort of autonomic dysregulation and again, possibly the sensations. What we do know is that you see night sweats in association with lots of other things, and some of those are autoimmune conditions like thyroid disturbance, rheumatoid arthritis, and we know that those are more likely to be associated with Ms. So it's possible there's something going on there. And again, with the sort of doctor clinical hat on, if this is something that is new or it's changed and it's associated with things like weight loss, then you want to get checked out because it can be associated with other health problems as well. And you don't want to say, oh, yes, it's just your Ms. Yeah. So, yeah, I think, in summary, it's something that people report anecdotally, but there hasn't been a big body of research showing one way or another whether this is definitively associated or not. But it would be a good piece of research to do.

A (34:33)

Interesting. So watch this space maybe then.

B (34:36)

Absolutely. Get Rob back, we'll do some stuff with them.

A (34:39)

Yes. And if you're struggling with something like that, is it something you should raise your. To your GP or your Ms. Nurse, What's the best way to sort of.

B (34:49)

Go down that any symptom that is new, that is changing, that is causing you difficulty, then. Absolutely. I think the message has to be, don't struggle along, don't suffer in silence, don't suffer by yourself. Because, you know, it is simple enough to sort of say, okay, we want to check your full blood count, or. Or let's have a look for this sort of thing. And even if it is just the ms, okay, how can we try to support you with this? Are there things that we can do? So, yeah, I think that's a sort of recurring theme, is you should never feel that you're sort of trying to struggle on by yourself with symptoms. There is help out there. Sometimes it's knowing the best way to access it. But, yeah, there will be someone who can help, hopefully.

A (35:37)

Brilliant. Let's talk about this one, which is an interesting one. We also see a lot of people talk about how can people manage frequent nighttime urination, nocturia, I believe we call this, without disrupting sleep or becoming dehydrated. Because we see people say this, Walker, well, I'm not going to drink anything, then.

B (35:58)

Yes, absolutely. Yeah, absolutely. And paradoxically, that can kind of be more problematic in itself. You know, sometimes, oh, I'm going on a car journey. I don't want to have to stop, so I'm not gonna. Not gonna have anything. To drink. But actually when you don't drink, your urine becomes more concentrated. And if you've got really strong concentrated urine in your bladder, that's actually quite irritating to the bladder and that's going to make you feel like you need to pee more. So it's getting the right balance. Not to the point that you're flooding yourself and sort of, you know, drinking gallons and gallons. But we want our way to be a nice pale yellow colour, so aiming for that, if possible, in terms of what to do. Okay, so there's some simple things and then there's some more complex things and some things that are a little bit disappointing. It's thinking about what you're putting into your body. So tragically, caffeine. So Diet coke, coffee, tea. I know alcohol, cigarette smoke and even some foods can be irritant to the bladder. So, you know, if you're going to have them, have them earlier in the day. Don't have alcohol earlier in the day. That's generally not a great idea.

A (37:15)

My doctor said I should start the morning with a gin and tonic. No, not so good.

B (37:19)

Yeah, Champagne every day and a cocktail for breakfast. No, please don't, don't. Thinking about when. When you're having your last drink. So having your, you know, your last big drink a couple of hours before bed. Although again, I know people may be on medications like amitriptyline or nontriptyline, which give this horrible dry mouth. And so then it's much harder to say, I'm not going to have anything to drink. Some of it is also going to come down to working out what's causing that in the bladder. So there are sort of two main directions that the bladder can go that can make you want to go to the Lumore. It can be almost like a sort of muscle spasm in the bladder when the bladder muscle gets quite irritable itself. And it only needs a little bit of we in there. This is the bladder impression. My hands are the bladder. It only needs a little bit of Weir and it starts contracting and so then you just sort of up and down so frequently. And sometimes it can actually be that the bladder isn't contracting very well, so it gets quite, quite baggy and saggy. So there's quite a bit of urine in there. And then sometimes it only takes a little bit of extra to make you feel like you need to be going. And the thing is, they can be treated quite differently, so it's good to get an assessment of what your bladder is doing and a simple way that you Know a district nurse, anyone can, anyone a healthcare professional can do is a bladder scan, which is when you do a pee and they do a sort of mini ultrasound scan which just tells you how much urine is in your bladder and that'll let you know, are you emptying fully or are you holding onto a lot of wee? And that can help sort of guide the sort of next step treatment options. And, you know, that can be something like just trying double voiding. So, you know, you go to the loo, particularly last thing at night, you go to the loo, wait a little bit, maybe stand up, sit down, move things around a little bit, go again. Sometimes bits of gentle pressure can help with that. Things like bladder training can help if you've got a little bladder. Sorry, you've probably had somebody on talking about all these things and I'm sure they'd be much better at it than me.

A (39:29)

I think it's such an interesting one because nocturia is something that I struggle with and I had to really do that, that bladder train because I would wake up and as soon as I was awake I would feel like, I need to go to the toilet, because if I go to sleep now, I'm gonna need to get up in an hour to go to the toilet. So for me, it was very much like as soon as my brain had started thinking it, then I felt like, oh, I need to go, I need to go up. And then when I actually go to the toilet, there wasn't much urine, but there was some, obviously, because it's been a few hours, so I had to really be like, no, I'm going to remain in bed. But then that feels a bit hazardous as well because obviously you don't want to have an accident. So it's, it's a whole minefield to get your head around it.

B (40:05)

Yes, yeah. And, you know, and again, things like bladder and bowel, I think it's really easy to underestimate how much they affect people and, you know, quality of life and that constant, well, am I going to need to go, where's the nearest toilet? You know, it's exhausting, isn't it? You know, the minute you go out somewhere, well, okay, am I close enough to ulu? If I get there, can I get there in time? Is it easily accessible? So, yeah, I think, yeah, we do need to really, you know, take these things quite seriously.

A (40:32)

Yeah. And the more nervous you get, the more you need to weed. I mean, that's.

B (40:36)

Oh, God, yes, yes. And it can become, you know, it's absolutely overtaking everything and sort of excessive. Yeah, yes, very true. Temperatures. I don't know. I don't know the evidence behind it, but it always seems if you're in a colder temperature.

A (40:50)

Yes, that's true. Yeah.

B (40:52)

So.

A (40:52)

So maybe we have have that bit of a heat spell now, haven't we? But like in the winter when it is freezing instead. Lovely climates that we have over here. Actually talking a little bit about temperature sensitivity that we know that this is something we've spoken to one of your colleagues at. At Nottingham Nikos about. We have a whole podcast on both cold and heat sensitivity with him. He had lots to talk about on that one. But we can link to that podcast in the notes as well. But obviously that can happen as well when you're underneath the covers. So if you're feeling too sort of. We've already spoke a little bit about sometimes you can feel burning hot, sometimes you can feel freezing cold feet. Is there somewhere to actually sort of regulate this that we could. Any tips and tricks that you know about?

B (41:44)

So, as we've said, so there is that sort of natural variation in body temperature overnight and, you know, sort of as. As lights go off and our body temperature starts to drop and then sort of climb throughout the day. It's again, not a huge amount of research. I think one study saying, well, actually in this group we didn't see much of a difference. But again, it's always possible that actual temperature regulation may be slightly altered. And I mean, to go to the other extreme, there are some reports of people with ms, usually quite advanced ms, actually running a really low body temperature and so being at risk of hypothermia. So I think if we're going to talk about active cooling, then always check your body temperature beforehand, you know, make sure that you're not plummeting into hypothermia, because that would be not good. But yeah, so particularly with ms, then again, I think as Nikos very eloquently would have described this sort of uhtoff phenomenon. So as the body heats up, then you know, the nerve signals get harder and harder and so Ms. Symptoms can feel much worse. And also that general sort of hypersensitivity to heat or to cold, depending on who it is in the situation. And in terms of strategies to help with that, then there's a few things. So one thing would actually be thinking about what environment are we in? So generally the recommendations is that your bedroom should be a bit cooler to help you get to sleep. Probably one of the many reasons why everyone is so sleep Deprived at the moment in hospital is so impossible. As well as the noise, you've got the temperature.

A (43:21)

Yeah.

B (43:23)

Thinking about bedding as well. So, you know, obviously synthetic fibres, I think classically are more likely to retain heat. But also my Facebook feed keeps coming up with sort of amazing cooling blankets and stuff. Don't know. There was a period of desperation during this hot spell when I got my dog's cooling pad and lay on it for a little bit.

A (43:45)

I've heard people with Ms. Trying this out as well. Yeah, yeah.

B (43:49)

And, you know, I've. I've spoken to people who have got like vests and articles of clothing that you put gel packs into and some people say that that's really helpful.

A (43:58)

Yeah.

B (43:59)

Obviously there are things like fans and aircons. Some people love them because you also get that white noise. So it can sort of help with soothing and sleep. But they're not cheap to run, are they? Think about what you're wearing. So, you know, loose, loose pajamas, nothing too skin tight. And again, you know, not. Not too synthetic. And also thinking about medications as well, because a lot of medications can affect the way either that your body handles temperature or your temperature sensitivity. The thing is, a lot of these are prescribed for very good reasons. So the thing is, don't just suddenly stop taking medications because you think it's going to affect the heat. But some antidepressants and some blood pressure medications, some other psychiatric medications in particular, I think can affect how we deal with heat. So if that's likely to be a problem, again, it's a good, you know, we should all be having regular medication reviews with our gp, neurologist, pharmacist, rehab doc, Ms. Nurse, whoever. So it's sort of a bit of a. An encouragement to do that as well, see how everything is fitting together.

A (45:09)

Speaking to the EMS register, this was something that had come up as a kind of top, top thing that people struggle with. And I have already pre warned you on which one this was. Yes. But it did surprise me a little bit, actually, and that was restless lakes. And what can be done about this? Is there anything that can be done about this at nighttime?

B (45:36)

Yes. So it's something that I've been looking at. Research recently has been sleep. Sleep disturbance in people with Ms. And there's a lot of research saying that people with Ms. Are several times more likely to have a whole range of different sleep disorders and that can be alterations in breathing. So sleep apnea, insomnia, alterations in your sleep phase. So you're sort of moved on a bit so you know, you get to sleep later, you wake up later, movement disorders. And one of those is restless legs. I think something like up to two thirds of people with Ms. May experience restless legs. And yet it's horrendous, isn't it? Because when you're shattered, all you want to do is just go to sleep and your body is like, no, no, let's run a marathon. Oh, horrible. And there are some medications which can be effective, but I'm aware that some people don't want to take the medications or they find them sedating the next day or they have too many side effects.

A (46:41)

Yeah.

B (46:43)

So in terms of thinking, what are the sort of non medical interventions? So again, sorry, I get very differential diagnosis. But there are a number of different things that can cause or contribute to restless legs. So being deficient in iron, having kidney problems and being pregnant. And those are probably all things you want to know about anyway. Yes, it's quite relevant.

A (47:06)

I choose pregnancy. I should say this.

B (47:09)

Well, I thought my legs were just restless and now there's a baby, who knew? But yeah, so making sure that any of these could be contributing.

A (47:19)

Yeah.

B (47:21)

And then thinking are there things that you recognize that are triggers? So again, some medications very commonly can make it worse. I occasionally have restless eggs and I have hay fever. So I know that when I take antihistamines then I'm sort of, you know, wanting to quick step all over the mattress all night. And again, some statins, some antidepressants, some stomach medications. So you know, quite a few common things that we take, they can make things more troublesome. There's a lot of theories and a lot of suggestions, but possibly not quite so much evidence. So again, it's often a case of trying to work out what works for each individual. Sometimes some people, again, it's getting that balance between doing enough without doing too little and without doing too much. So if the legs are feeling really irritated for any reason, then trying to get that balance. And so again, doing some gentle stretches, doing some progressive muscle relaxation as you're getting into bed. Again, that can be quite helpful if you've got disturbed sleep. Anyway, so there are loads of really good audio things that you can listen to which can just help with that. Thinking about temperature. So some people find that alternating different temperatures, some people say having a sort of warm, so not cold, not hot bath or shower before you get into bed. Again, avoiding caffeine, avoiding stimulants, all the fun stuff. And yeah, thinking about your positioning in bed because I know part of the rest of Sex is obviously that you just desperately want to move, but try to make sure that you're starting in a comfortable position to try to stop things from really ramping up like that as well. Anecdotally, some people talk about things like weighted blankets.

A (49:15)

Yes.

B (49:16)

Yeah, so some people love weighted blankets and you know, it helps from a sensory perspective. You know, you sort of get that deep pressure. There's some suggestions it can help with sort of things like anxiety. But equally, some people find them an absolute torture device, you know, because it can restrict your movement a little bit. I mean, they should not be more than 10% of your body weight, I.

A (49:44)

Think.

B (49:46)

But they, you know, they can be perceived as being really uncomfortable. And the problem is they're not cheap. So it's that thing of you, what you don't want is for people to go and say, oh, this was advertised on the Internet and this, this promise to solve all of my problems. And then you wind up with this room full of, of things. So, yes, tricky. I wish I had a sensible solution to that.

A (50:08)

I think when I've spoken to OTs and physios in the past, you sometimes can go and test some of these things, can't you? If you, if you happen to have, have a friendly OT or physio that surrounds you. Because some of those, like we talked about the equipment that you can sleep with pillows, so wedgies and things like that. I don't know if you could potentially try out the weighted blanket and see, because my first thought when I heard about weighted blankets many, many years ago was that would, you know, when you go to a hotel where the blanket is very much tucked in. And I thought, is it going to be like that? Because that restricts me so badly, I, I get very fidgety if that's happening. But clearly that's not the same. That's not the feeling that you get from a weighted blanket. But that was where my mind went when I heard about them.

B (50:49)

Yeah, I mean, definitely get, you know, if you working with OTs, physios, your AHPs fantastic. Because also they are phenomenal problem solvers. Yeah. Again, interesting to think more about. Is there a way of trialing things like weighted blankets? I don't know.

A (51:05)

That's an interesting one. If you're listening to this podcast and you love or hate a weighted blanket, let us know, give us a comment. So that was restless legs. How. Obviously that is one part that can disturb sleep. But let's talk a little bit about, like, how is the impact on sleep disturbance on daytime Symptoms like fatigue and brain fog and mobility and, and you know, how can people actually protect their sleep? Because you become in a bit of a vicious circle around here, don't you?

B (51:36)

Yeah, and I guess there's, there's sort of two parts of that. So firstly, the effect of sleep or sleep deprivation on, on symptoms, it's massive. I mean, you know, sleep is, is so important to our function. It's both our sort of physical, so immune, general health, cardiovascular, but also sort of psychological and emotional because it's how we process everything that's been going on during the day and sort of get ready for the next day. And yeah, systematic sleep deprivation is incredibly bad for your health. People die earlier, they have more heart attacks, etc. Etc. Having said that, the problem is that if you become, as we said, obsessive about something, then you're lying there in bed going, oh my God, I need to sleep, I'm not asleep, I can't get to sleep. This is so unhealthy for me. What am I going to do? I'm going to die young. So that's not always terribly helpful to focus on that. We do know in Ms. And anyone who has Ms. Or knows someone with ms, that there are some. You've got your sort of obvious visible symptoms, but then you've got your invisible or hidden symptoms. And fatigue is obviously one of those disturbed sleep and they really have this real vicious cycle. So if you don't sleep, you're more fatigued, your pain threshold is lower, that's going to make your mood lower, that's going to make you more anxious, all of these things are going to make it harder to sleep. So it does become a really vicious cycle. You know, your reserves for dealing with anything are that much lower. And we know, you know, fatigue is so common and so disabling in Ms. Anyway, if you've then got superimposed sleep deprivation, that really is just adding insult to injury. So sleep is crucial. And yeah, I really like the idea of, of protecting, protecting your sleep because it is, you know, I've read some of it, it's a form of self preservation. You know, if you sleep then you will be healthier and generally better functioning in every area of your life. So it's certainly not a selfish thing. I think often it's really difficult, isn't it, to try to prioritize sleep, particularly when you've got all these other demands on your time. You know, you've got family, you've got work, you've got other things that you want to be doing. And again it's one of those challenges of living with a long term condition is missing out on things because you just want to be able to look after yourself and not feeling guilty about it as well, which I think can be so difficult. Is that, would that fit with your experience?

A (54:26)

Oh, definitely. So much I, I went through, I did some CBT for sleep sleep training and it was really interesting because I then had to set my bedtimes being the same and get up every morning at the same time and go to bed every. So I would have to talk to my kids and my husband and sort of said no, look, I need to go to bed by 10:30 so, so if you guys are up, that's fine but. And I'm not being, trying to be antisocial or horrible or anything but actually this is what I need to do to try and do. And it really improved my sleep. I mean it took a long time to sort of get into the rhythm but it really did, it really did help. But, but like you say all that feeling of guilt of like why I should be doing this or I should be doing that, why am I not sitting watching TV with my husband or you know, she did that beforehand. But, but, and he's a bit of a night owl and I'm more of a morning person so it's a little bit of a disjoint there. And I'm guessing a lot of people will go through all those feelings but actually that protect your sleep. It's so important.

B (55:25)

Yes. Yeah. And yes, it's so, so difficult. And I suppose it's one of those things often people learn over time, isn't it? That actually I need to set these boundaries and it's a very reasonable thing for me to do. But sometimes explaining that to other people can also be a challenge as well.

A (55:44)

Yeah, I know I'm lucky because my children are older but I mean if you have a baby, you can't really explain that, sorry, mummy needs to sleep now. That's it. In some ways we've already discussed this because we're talking about other solutions. We've talked about stretching and we've talked about pillows and veggies and cooling blankets and things like that. But are there any other practical solutions that we haven't mentioned, you think? But also how would you get about finding out more about them? Do you know any sort of ways to get, get a hold of the goods?

B (56:25)

So I think, I mean probably a lot of stuff because was it the CBTI that you did? Cbt insomnia yeah. My understand. My understanding is that that is really sensible about sort of bedtime routines.

A (56:37)

Yeah.

B (56:38)

And sort of getting into that, you know, I know people who always do a bit of. Was it yoga with Adrienne and then they sprayed.

A (56:44)

Oh, yes.

B (56:44)

Lavender pillow mist.

A (56:46)

Yeah.

B (56:47)

So I think anything that. Anything that makes bedtime a nice thing, because, again, that can become a real battleground, can't it, when you start associating your bed as the place that you go there and everything goes wrong. So there is that sort of almost resetting.

A (57:03)

Yeah.

B (57:04)

Very easy to say. Very difficult to do.

A (57:06)

Yeah.

B (57:07)

You know, there are some things that, you know, you can address and, you know, hopefully, fingers crossed, that will help a lot of people. But now we did mention there are these sleep disorders which can be seen in people with ms, you know, sleeping too much, not sleeping enough, sleeping at the wrong time and refreshing sleep. And some of them can be due to diagnosable and treatable disorders. So obstructive sleep apnea, for example, means that you're not getting enough oxygen in overnight, your breathing goes a bit funny. And so people will often wake up feeling unrefreshed and with headaches. Their partner may notice them snoring or stopping breathing overnight. And that can be very strongly associated with other symptoms. And that can be diagnosed with sleep studies, as can lots of other different sleep disorders. So it's reasonable to seek extra help from your gp, who may refer you on from a neurologist. Some sleep clinics are run by neurologists, some of them are by respiratory physicians. So there are very detailed ways that they can look at what your brain, different muscles, your respiratory system is doing during sleep and really try to get to the bottom of that when things get. Get tough.

A (58:19)

Yeah, it's interesting. That's how I ended up doing the cbt, because I went through a sleep clinic and they sort of said I didn't have any respiratory. There was no. There was no reasons for me waking up and doing things.

B (58:31)

So.

A (58:32)

Which was nice, but it also a bit frustrating because you go, well, why am I still waking up then? And that's when they then suggested that it might be down to, say, anxiety on sleep. And so we went down the CBT route, which was. Which was very useful for me, but obviously it's different for everyone. But it was so interesting going through the sleep clinic because you have to have all this equipment and things and sleep with it.

B (58:55)

And I think, you know, I've never been through it myself, but I imagine that trying to sleep with all of that Stuff attached to you. You always think that must be difficult in sort of getting. What is my natural night's sleep? When you're sort of wired up to different bits and bobs.

A (59:07)

Yeah, it's a little bit strange and I think I had slept so terribly that night, so when she said to me, oh, you had a really clear sleep. But they're obviously looking for different things. They're not really looking for, you know.

B (59:21)

Yes, yeah.

A (59:23)

Me fidgeting or getting up, it was more what. What the body was doing. So that was quite an interesting one. So when you tried everything and you still can't sleep, what would you return to? Who can support us?

B (59:39)

Yes. So you're not alone. That's a really important thing to remember. And I think something that I would say is don't turn to things like alcohol and, you know, sedative medications. It's something that is really tempting, but in the long term it's not a sensible solution. So, yeah, talk to your gp, your neurologist, your rehabilitationist. It can feel so isolating and so lonely, can't it? Particularly when it's something that may not be quite so well recognised. But there are options and alternatives and treatments and support out there. So don't stop asking for help.

A (60:20)

That's a really good point to end on there. And because sometimes, like you said at start there, we put down a lot of things to being ms, but actually it might not be.

B (60:33)

Yeah, yes. All those symptoms and, you know, particularly when they're not the sort of obvious visible symptoms, we just think, oh, gosh, I just need to suck it up and get on with it. But you don't.

A (60:44)

No, no, you really don't.

B (60:45)

You shouldn't have to.

A (60:47)

So, yeah, brilliant. Reach out and talk to someone. Thank you so much, Laura. This has been really interesting. I hope you get a good night's sleep tonight. I'm hoping that I will too.

B (60:58)

Fingers crossed. Absolutely. My cat set off the Roomba at 4 o' clock in the morning this morning. I think they were fighting. One of them jumped on it, so it suddenly started doing a spot clean. So, yeah, that was. I didn't actually raise that as a potential cause of disturbed sleep because I thought it was quite niche.

A (61:15)

I'm sure a lot of people do get woken up by partners or pets and things as well. So. Yeah, no, not been a Roomba in the middle of the night. That's interesting.

B (61:26)

It was a surprise.

A (61:30)

Thank you so much.

B (61:31)

Thank you very much. Hi, everyone. My name's Amy and I work in fundraising team here. At the Ms. Trust. Before we dive back into the episode, I just wanted to say a quick thank you. This podcast and all of the work that we do is only made possible because of our wonderful supporters, donors and fundraisers. If everyone listening to this episode donated just £1, we could raise over £2,400. Money that can help us provide free, trusted information online and in print, answer your questions about life with Ms. On our helpline, educate new Ms. Nurses and place new roles to support those living with advanced Ms. And fund research into the issues that matter the most for people living with multiple sclerosis. If you're able to donate a little more, consider donating the cost of a cup of coffee. Every donation has a real lasting impact, no matter what you're able to give. If you're looking for a way to get more involved, why not join our fundraising challenge? Switch. This September you pick something to switch, whether it's chocolate for fruit, taking the stairs instead of the lift, or swapping screen time for reading time, and raise money to support those living with Ms. It's a great way to join our fundraising community and make a real difference. Even if you're listening at a later date, you can take part at any time of the year. Just get in touch with our fundraising team@fundraisingstrust.org thank you for being with us. Your support means everything. We truly could not do it without you.

A (63:05)

Thank you so much to both of our guests and thank you to you for tuning in today and having a listen about nighttime symptoms. I really hope that this brought you some insight and some practical ideas for managing those challenging nighttime symptoms. And please remember, as Laura said, you shouldn't suffer in silence if this is something that is affecting you. Please reach out to your Ms. Team or to your gp. And if you have any questions about ms, and that could be about nighttime symptoms or it could be anything that you would like to know about Ms. The Ms. Trust Helpline is here to try and help you. You can call us on 08003839 from Monday to Friday from 10am to 4pm and if you're calling us out of hours, you can leave a message and people from the helpline will get back to you. We are not open on Bank Holidays, I should add. You can also contact us on social media and you can also give us a follow on social media. We like it when you do that. We are on Facebook, YouTube, TikTok and Instagram and here you can find updates, videos and other information and interesting content and please don't forget that you can find this podcast where you would normally find or listen to podcasts. So like Spotify or Apple podcasts, you can find this on YouTube as well as a video. If you prefer to watch, please get in touch with us and let us know what you thought of this podcast and what topics you'd like to see us covering in the future. And if you enjoyed this episode, Please, please please please please leave us a review and share it with anyone who might benefit. It really helps us to reach more people. So until next time, I hope you get some good night's sleep and take care and I'll take see you next month.