Emma and Helena
Hi I'm Emma. And I'm Helena. And we both work at the MS Trust. Just a little disclaimer, the interview in this podcast was recorded over zoom. So apologies if the sound was iffy at any stage, please do bear with us.
Emma
We'd like to welcome you to our podcast: multiple sclerosis, breaking it down. And this time, we're going to be talking about heat sensitivity and MS
Helena
And when we planned this podcast we said let's do it in July. But we couldn't really have timed it much better. With the temperature absolutely soaring this week as well, at least in the UK, its been going up I know, especially in England, where we're at, but pretty much everywhere seems to have a bit of a rise in the temperature. And I ran a 10k race in London on Sunday, and it was very, very hot. And I think some parts of the country is supposed to be about 35 degrees this week.
Emma
So between 60 and 80% of people with MS find that heat can cause their symptoms to worsen so whether excessive central heating, vigorous exercise or having a fever can all raise your core body temperature and you might also find environmental and lots of other people together a little bit uncomfortable. So if you have MS, just a small rise in core body temperature can actually make a difference to how you feel.
Helena
And later on in the podcast, we're going to be chatting to Dr Nikos Evangelou, who was on the cold weather podcast. So even before we start, let's just say, if you listen to this, and you go ‘Oh, but I'm not affected by the heat. I'm affected by the cold’ then go and look into previous episodes because we've already covered this, a whole podcast about cold sensitivity. And so but first before we start chatting to Nikos, we reached out to our social media channels, I hope you're following us on Twitter and Instagram and Facebook and YouTube. And asked how people with MS were affected by the heat. And this is what you said.
Emma
So first up, we've got Caroline from the MS trust Facebook group, she said I'm affected by the heat it makes me really weak. And sometimes I can't move without falling over. My body either goes as rigid as an ironing board or totally floppy my coping strategies are sticking my feet in a bowl of very cold water and spraying myself with water.
Helena
And Emily from the same group said, I never used to be affected by the heat. But I'm noticing that I'm more and more these days, it feels like my brain just stops working and my cognitive function gets really impaired. And Tara also from the group said heat sensitivity is new to me and makes me want to vomit.
Emma
We also asked the same question on our Facebook page, and we had over 70 comments. So it's definitely something that affects a lot of you. And here are just some of them. Karen said that heat totally innovates her, her physical symptoms go into overdrive, mobility and balance, are much worse, my brain falls over and I'm cranky, and I once loved the sun and heat but not anymore.
Helena
And someone else said my symptoms are excavated in the heat, my legs become 10 times heavier, and it makes me prone to tripping. And Deborah said my MS only affects me from below my waist down. So in the heat my mobility is very affected as is my bladder, fatigue is much worse and it's totally draining.
Emma
And what some of you actually said that you can feel a little bit better in the heat. So Helen said I'm the opposite, that heat actually helps with my symptoms. And I've just come back from Kefalonia. My hands and the sensations improve my fatigue and clumsiness and so reduces
Helena
Someone called Kerry agreed and said absolutely love the sun and heat, I go abroad every year to 30 plus degrees and soak up the vitamin D and feel amazing. And we also asked on Instagram, and Jen said, it makes me exhausted and makes my arms unusable pins and needles all over my body. So there's quite a lot of different symptoms, isn't there?
Emma
Yes its not just like the heat affects one time, you know, there is quite a variety. And so we'll hear more from the MS community on some tips about how to deal with heat later on. But for now, let's hear what Helena and Dr. Nikos have to say.
Helena
So we timed this podcast very well, I think, because we're all feeling the heat at the moment. And I'm here today with one of our favourite podcast guests. We've already had him on talking about cold sensitivity, so we thought what better person to speak to about heat sensitivity. Dr. Nikos Evangelou. Hello.
Dr Nikos
Hi, Helena. Nice to see you again.
Helena
Shall we just start with the most obvious question, what causes heat sensitivity?
Dr Nikos
I mean, because what causes heat sensitivity you could say ‘the heat’, you know, it is one of these historical and interesting and of course, very, very common symptoms that people will report. It is very, very common. Something like, it depends on whether you want to cover your personal experience in the clinical or look at publications, some 68% of the people with multiple sclerosis. At one stage, they will say that though, you know, I'm more sensitive to heat than, than my friends and my family. And it's also quite interesting, because I think we would have mentioned and this is the historical aspect that many, many years back when people did not have MRI scans, and we're relying purely on the history, there is this story that was heat sensitivity was so characteristic of MS, that people will put them in a hot bath, and that they will have struggled to get out of the bath. So we don't do that anymore. But this is one of the stories that you mentioned, the clinics. So we have the brain, we have nerve cells, and we have the myelin the insulation of the nerves. And for the nerves to work in an optimal way, the conditions around has to be optimal. And exactly as we need to have been fed, and we need to have had some sleep, and we need to be feeling comfortable and not being very tired. There are many, many parameters that affect the function of the nerves, and one of them is the optimum temperature. And if you think about is not only in multiple sclerosis, if you go in the Sahara Desert, somebody without MS will struggle and will not perform as well… so there is an optimal temperature that we operate. And specifically in MS because we have the installation that the Marlin installation of the network is not working very well, there it is more vulnerable in changes of the micro environment. So you know, although we keep talking about there is a nerve cell and there is an action that sends the signals and, and sends the, you know, the message from one cell to another cell. There are very complicated molecular mechanisms and the nerves have some openings, some gaps. And you know, because of the MS, there are some changes, and they're a bit more vulnerable. So any change or the temperature, and nerves are not working as well. So this is what we think in Nikos’ long winded introduction, this what I think is happening in MS. Yes, everybody can be affected by change of the temperature, if it's very cold or very hot, specifically in MS because the micro environment needs to be optimal to perform optimally. It seems to be a bit of a problem.
Helena
So our brain should really come with one of those little labels that you see - should be stored in not below 18 degrees
Dr Nikos
Yes, yes, yes, they have done a number of studies, they have done a number of studies and you know, the studies that you know, how do we learn about the human body? My son is studying veterinary medicine. And, and because we have, he was surprised that oh, you know, all the animals have a liver, all the animals that have a brain and it will have all the similarities. So this is how we are learning. So there are a number of studies that that we can do it in the lab, in a dish, but also, you know, there are some experiments that have done with animals, that they had something that looks like multiple sclerosis. And you know, they have adjusted the temperature of the environment. They have adjusted the temperature of the animal and they could see actually, the firing of the nerves seem to be impaired when the temperature goes up. Yeah, so the degree of the myelin loss. It affected also the firing much more than in animals and in humans, that they do not have myelin loss. So I think people with multiple sclerosis does seem to be affected a bit more from the temperature change that everybody else can be affected.
Helena
Yeah. It was funny I was out during my lunch break for a little bit in the garden, and I think I left my telephone laying there and the screen got very hot, and it came up with a warning message on there saying, your screen is very hot, your telephone might function slower than normal. And I thought, Oh, you and me both telephone, but I guess it's quite similar.
Dr Nikos
Yes you're like a telephone, actually, because we were discussing before I were going to do our chaotic discussion about it. And you know, this is the way we like it that the chaotic discussion. The experience that you said about you're sitting in the garden is very interesting. Because so when we are measuring temperature, people talk about the core temperature. And we have become a bit of obsessed, you can say, okay, what's the deal, but you know, the brain or the spinal cord is really insulated by lots of layers from, from little fat from muscles or whatever, doesn't really change that much by being exposed in a high temperature you know for 10 minutes, or 15 minutes. And a number of people I don't know, if you have ever experienced, you go, you have a brief exposure to heat, we know that this heat is not going to change your core temperature, but you say I'm exhausted. So there is a lot of discussion that it changes in the core temperature is not necessary. Probably the skin temperature plays a bit of a role. We don't really understand why this is the interesting bit, you can say that, why skin temperature plays such a role when it is a function of the brain and the spinal cord, lots of things to learn about.
Helena
Well, it definitely must be because I guess we're so focused at the moment about the weather because it is so hot outside. But we certainly have heard lots of people contact us and talk - we did a podcast about menopause and MS and you know, getting sort of your body temperature going up along with your cycles, and suddenly noticing different symptoms popping up when your core temperature rises a bit as a woman. And with exercise as well when you when you're doing things. So I guess it's not, I guess we should underline that it's not just about we're not just talking about that big thing in the sky at the moment.
Dr Nikos
No, it is very common. And actually, people have tried to do that. So, you probably remember there are some laboratories that study temperature in a robust way. So there are some chambers that you can adjust exactly what the temperature.. they can put the number of people in, in a temperature in a chamber, they can keep them there for an hour, they have increased the temperature, it has been some increase of the skin temperature, but not necessarily of the core temperature of the body. And there are a number of pleasant and unpleasant ways of measuring the core temperature. But so but people felt and they measured that the balance was not right. It was swaying a bit more, you know, they were not as strong or their feet. They were complaining of fatigue by increasing the temperature. And then you say but yeah, your skin temperature is a bit higher, but it hasn't gone inside you. How do we explain it? There's still lots to learn.
Helena
I guess when we had COVID there was a lot of talk about temperatures and flus and things like that then sort of infections mimicking almost MS relapses because your body temperature had gone up as well, like it's that sort of the same.
Dr Nikos
This is the same man it's one of the commonest colds that we get here in the hospital, and sometimes very difficult to tell. Is it a relapse and people call it a pseudo relapse? Is it a pseudo exacerbation and the pseudo you know it has been a bit of a discussion is probably not right, pseudo, as if you're making it up or something, lying about it, but it's not. So, the general idea is that you have a weakness in a part of the nervous system, the temperature arises because of the things that we discussed before. There is less easy communication of the nerve fibres because my damage was affecting previously the nerves go to my left arm. The temperature will affect mainly the nerves and they go to my left arm. I will have a left arm more weakness than I call the MS nurse as I do. I think I've got a relapse. And then if you find out that this is as the temperature was rising because I'm going down with COVID or because I have a chest infection. And usually we find a couple of days later things as the temperature goes down and the cold gets better, the left arm functions in a bit better. So this is the pseudo relapses. So pseudo access a patient, we're talking about these symptoms. Usually they're very, very similar what, what we have experienced before? Yeah. And then you know that, oh, this is the problem. Tell me about your running!?
Helena
Well, with the running, I feel like it's funny, because you're obviously when it's really hot, it's hard to run. So I have to run early in the morning, when it's cooler. But I do find the best way for me to battle fatigue is to keep active. So when I have to do a lot of sitting down because it is hot, I find my brain just turned into sludge, pretty much both because it's hot, but then also because I'm not active. So I find running is hard when it's hot. But it's also really important to try and do it. But I haven't gone up to run in the middle of the night, I find that that's too much.
Dr Nikos
The budget, I mean, this is a fine balance, but you didn't have any, because I have a number of people like one of the ladies remember it because we only have one or two people that are striking as they came to see me with. People talked about YouTube's phenomenon. So YouTube sees this, I assume is a German neurologist of the previous century in the previous century. We'll come up with that describe how by doing some exercise to by having a hot bath, your vision is impaired. And usually this happens to people that they have experienced and attack of optic neuritis, to there is already exactly the same principle. You have a loss of money, you have a bit of inflammation and damage to the nerve function behind the eye. So it operates all right under normal conditions. When you exercise when you are really hot. And then there is the malfunction. And I remember this young lady who came to see me and say that look, you know, I'm very fitted to the game. But something bizarre happens. Every time I go running, my vision becomes, you know, blurred. And in her case, she hadn't had an optic neuritis. It hadn't cut the clear attack of optic neuritis, which is again, it's interesting that you have some attacks where the whole pain of the eyes there and you lose completely your vision and you cannot skip it. And other times you can have a milder attacks that sometimes people do not notice because we have two eyes and we don't you know very frequently close the eyes. So this was actually the initial symptom that later on we did the scan and we diagnose you know, image was diagnosed, you know, came to see me because I developed this problem with my eyes when I'm running.
Helena
That's interesting. We had Nick who was on the podcast when the one we did about exercise and he said exactly that he his first symptom was optic neuritis, and he said if he goes out when it's too hot, his vision always goes a bit funny for a bit and then it sort of gets settled. I can find if I go out sort of mid day running that my leg which was a bit fuzzy. Once upon a time one of one of my first sort of symptoms was pins and needles in my leg, I can feel that the leg feels a little bit weaker. It's like it's slightly asleep when it gets very warm.
Dr Nikos
I mean, that's what it was when you were running. When you did the very, very brave 10k In the middle of the you know, London heatwave this weekend, you didn't have you don't feel that there is a bit of a buzzing of the legs or more tingling,
Helena
I didn’t feel so much buzzing I did feel like the legs were a little bit heavier. I feel like that sort of feel like they've gone to tree trunks a little bit. But no, I didn't get that feeling. I think it needs to be maybe a longer run because it 10k it because at this I felt this a lot when I was doing like training. So I was out for maybe two hours in the sun. And that was you know, quite a lot.
Dr Nikos
I just wanted to put a bit of a note here that 10k For Helena is not very, very much. A majority for the majority. 10k is a lot.
Helena
No, no, it is it's a long run, but I feel like I didn't but I can't always say that it happens one way or another. But well, you were saying before about initial symptoms that I often get. If I have any sort of pseudo relapses going on, I get vertigo, and I've definitely done the mistake of getting into very hot bath, and then getting out of it, and then suddenly everything's going or funny. So yeah, pseudo relapses can be very scary. If you're new to MS though
Dr Nikos
Yes. And then usually, we obviously would like, we'd like to have a black and white answer. But usually, it's a variety of factors plays a role. And is not only the dizziness, of course, when you are having a bath, you have what is called the vasodilation. So there is all the lots of blood goes to, to your skin, and even people without any previous attack of MS, they will feel a bit dizzy sometimes. And you have heard of people when they're sitting down, and suddenly they jump up. And especially if they're told, they can feel a bit of a, so it's a combination of being in a nice hot bath, and you have a little bit of a weakness in your business aspects. Plus a little bit of blood goes to your nice hot bath. Yes, yes.
Helena
Makes sense. And so I guess one of my questions was, what MS symptoms do we typically see worsening in the heat, but pretty much everything.
Dr Nikos
Everything and, actually that there is even a report and I have had one patient again, that I can recall that, you know, they had an attack, where they can start seeing double. And this is called, you know, double vision, let's call it the blob is obviously there are some fancy neurology term for this. But these, these double vision was becoming more apparent only with the hot weather in the summer, they were saying that look, the sun was coming, I'm going to start seeing double again, then when things were cooling down again, you know, double vision was not an issue. And there are there are some people that they have started a bit more that even a small change we are talking about, I don't know, half a degree, half a degree of searches is enough to cause a difference in the functioning in the sensitive nerves in some individual. So it doesn't apply, of course, to anybody, but to everybody. And then there will be there will be 30 40% of the people with multiple sclerosis. I don't know what you're talking about. Like, you know, I had a couple of people that whenever you talk about fatigue and MS, they come along and say, I don't understand what you're talking about what is fatigue? So it doesn't affect everybody?
Helena
No, no, I think my granddad he had MS. And I never, I think when I said to my mum when I was diagnosed and so when the worst thing for me is really the fatigue and she said he was never fatigued. And it was like that compare.
Dr Nikos
Not everybody is exactly the same. Exactly. You have mentioned that, you know, the the common problem is that, oh, my father had this problem. So, you know, or have met somebody with MS problems and especially in the beginning, you tend to assume that Oh, exactly like my friend Jane. You know, I will have the Jane case. Absolutely.
Helena
Speaking of fatigue, and obviously people struggle sleeping when it's very, very hot. And then that gets a knock on the day after, doesn't it even if it's not hot the day after people tend to struggle with MS if they haven't slept properly, is there anything that like apart from trying to keep a cool bedroom, are there any tips for people to get better sleep
Dr Nikos
With the better sleep, is the same principles sleep is important, temperature is important. And you have everything else and so what is the right environment? What is the right conditions of having minimal MS symptoms, and sleep is very important. And most of the people will say that if I wake up five times during the night to go to the toilet, you know, of course what would you expect? You know, I'm exhausted afterwards. So if you are having a miserable night because you have the high temperature because of the summer, I have my you know in my striking because of my menopause and then I have to go to the toilet. So instead of waking up three times I wake up 10 times. And you know, this is the very eloquently described. You know, Ruth Dobson was talking about the menopause, how we tend to confuse things and we tend to attribute everybody to multiple sclerosis ignoring the other things and I recently had the patient who had obstructive sleep apnea. So this is a condition that you are snoring, of course, you can say that you asked my wife, it would say that you are one of them. So your snoring and then the breathing is affected, and somehow the oxygen drops, and then the body micro wakes up, but it's enough to disrupt the sleep, it's enough to filter the next day. So the temperature is important, you know, we can put our fan and we can do to control the right conditions. But we should not ignore that the temperature for the fatigue does not work on its own, or everything else. Yeah, I'm stressed because of work because nothing is working here in the university and the computers, or the hospitals are terrible. So, you know, let's not blame it all down to heat.
Helena
Speaking of sleeping, there was actually there was a question we asked, we talked about this podcast coming up on social media and there was a question from someone who said, Why do I suffer from extreme hyperhidrosis at night, even though the temperature is quite cool deliberately. So he puts, he clearly can lower his temperature in his bedroom.
Dr Nikos
So okay, let's go to the nervous system, again, the nervous system is, is roughly divided into the nervous system that's under our control, and the nervous system that is not under our control. And through the nervous system, that it is the autonomic nervous system that they want that they it works without us telling us where to do it apart from other things controls the temperature regulation, and sweating and so on. And there are a number of studies that have shown that people with MS they can have autonomic disturbances. So, you know, the more frequently it is people reporting that they are not sweating, that they say that look, you know, it's, you know, my feet are cold, I have cold feet, what's the significance of this? Why do I have cold feet? You know, my husband doesn't have cold feet. And another's, they can have exactly the opposite. You know, their sweating excessively, and usually, and unfortunately, you know, you can do some studies you can do, you can try to measure the autonomic, you can quantify, you can stimulate the, you know, the skin, and you can see how much it sweats and how much it doesn't, right. But I think usually is part of the MS is not uncommon to have it on its own. So nothing to do with multiple sclerosis. But certainly sweating is an issue that has been found in multiple sclerosis, that there are lots of people that they are not sweating enough, but also, like we're talking about the cold sensitivity and the heat sensitivity is the opposite. There are people out there sweating excessively. And you know, and you could say to me, how do I prove it? excessive sweating is because of the MS. If for 40 years, we didn't have any problems, then MS develops and then suddenly, there's then you can say, I cannot prove it. But I think this is what it is. But I don't think I mean, there are a number of things that can be done. There are Botox injections, you know, can because the Botox block some of the chemicals that are related with this waiting so I think one of the treatments that can be given is you have multiple little Botox injections, and for a few months, you know, depends how uncomfortable it is, this can be reduced, of course with the state of the NHS, when you go to your GP and you say, Oh, I have this problem. You really have to persuade them that it is a disturbing symptom.
Helena
And there was another question as well. Somebody said too much heat makes my skin crawl so bad. And Im going to a holiday in Spain in August and I'm dreading this feeling already. Is there anything I can take to stop this antihistamines and creams do not work
Dr Nikos
Crawling is a sensation isn't it? So we're talking before the you know some people describe tingling some people describe buzzing some people you know, so if I stood correctly and you know, you might be you might be wrong, my interpretation. So the temperature affects the function of the nervous system, the function of the motor system, if you have a motor problem, your motor abilities, your movement is affected. If you have a sensory impairment, there are a number of things that you could get number one is, you don't get the right sensation. So you say I, you know, I'm touching you and I don't feel your touch, you know, the sensation is not as good. And there is the other feeling is that you touch me, but I feel it as abnormal as a pins and needles as crawling or even as painful. So if that is a problem, and, you know, I was like laughing that I think we are all very using some medications in MS like Gabapentin and gabapentin is a medicine and pregabalin medicine that we're using for neuropathic symptoms. So symptoms that we think that the firing of the nerves has gone wrong, then you could potentially say, if I take a very, very small dose of Gabapentin can in the balance, get less crawling, uncomfortable crawling, but without necessarily increasing the tardiness, increasing, putting on weight and these kind of things. So the only problem with medications like Gabapentin and a couple of others is that sometimes we recommend is Oh, give it a go to see if it helps. And you see people 10 years later, and you say why are you taking this? I don’t know, the doctor told me to take it.
Helena
I think I took it for when I had a relapse that made half of my torso go numb. So I was very much like I couldn't feel anything. But if I you know, if I was trying to put the t shirt on, it felt like I was getting someone else dressed on just one side of the body was very strange. But I was had a really kind of quite painful MS hug at the time. So that's why I think they gave me Gabapentin. And yes, I did put on weight even though I was only on it for like six weeks or something. But bringing it back to the to the heat stuff. Or rather, actually, do you know what the in the cold sensitivity podcast we spoke a bit about the people who actually love the heat. And people who we sent who actually got sent to sort of treat their MS by going to warmer countries, which we will say was a bit of a lovely thing. And when we posted this on social media, there was so many people there were like, No, it's lovely, my symptoms are so much better the pain goes away. But is there anything these people apart from just enjoying the time at the moment, should think about when it's this hot? Is there anything that they should sort of be aware of that? Or should they just enjoy it.
Dr Nikos
I mean, certainly in the beginning exactly as you said about the pseudo relapses.. it is a bit frightening to say, oh, do I have another relapse and every so often you come across people that said though this year, I have had 27 relapses, you know, on average, we think, you know, people experienced one relapse every couple of years, three years, four years, you know, we've found out the people that we treat here are not the average relapse is something like one every 10 years. So, you know, out of 10 people one will have a relapse. So, so again, this is long winded the introduction so what else can you do? There are there are many people that they love the heat because it's associated with nice qualities. And also, you know, most of the times whenever they they're hot, then they will go to the swimming pool. And they will have a great time. So yes, there are people that they report sensitivity to heat, then it's an element how much sensitivity to heat. So if you put if I put you in a hot chamber and I measure your symptoms, or might find that your sensation is 10% reduced, but if the same time you're out with friends in Portugal and you're having a great time and then everything's alright you say 10% is down that 30% is up I love Portugal. Yeah, so the water is you know, is also interesting that you know, lots of people that are meant exercise is important. You know, go swimming and you know, I don't know..Do you do any swimming?
Helena
haven't done so much lately but I used to like aqua aerobics a few years back and when I lived in London and that was quite good fun because again you don't feel sweaty and horrible it's nice and it's quite fun to be honest. It doesn't feel like exercise you feel like you just larking about a bit
Dr Nikos
And you know so there are a number… and you know your podcast on exercise. I'm sure was mentioned the number of people to find lots of advantages of, you know, swimming and doing exercise in temperature. First of all is of course, the water temperature is lower than, you know, the heat that heats us in the summer. So, you go you plant in swimming pool, you know, in your holidays, and you say, Oh, this is great. And of course, even the heat, that we exercise, you know, and we generate some heat in dissipates, this means easily, you know, because the water takes the heat away much more than… they say that I think my son had physics several years back, and they're talking about the thermal conductivity of air, you know, is I significantly less than 20 times less than if you put water around. So, of course, you have all the other advantages that helps with the people that they have weakness and the you know, the gravity changes. And so lots of people love it. And if you want to do exercise, but you are struggling because of the heat, this is a very nice introduction to do exercise that you can do even in the in, in the summer. And in the hot weather. People say that, actually, we need to be a bit careful, but we should not go completely the other way. And of course, you know, there are many people that has said they have seen Joe go cold lake swimming in the middle of the winter. But so, cold water swimming, can increase stiffness of the legs to some individuals. So common sense, like most of symptoms in the message common sense. And try to see what suits you with, with your particular MS and your particular symptoms, isn't it?
Helena
Yeah, I find it quite interesting what you were saying that, actually, even if you're struggling in the heat, but because of the environments and you're being happy because the sun is out and it's, you know, you're there with your friends, you're enjoying it because on the cold podcast we were talking about, if it was the actual cold, or if it's more the darkness and the gloominess of, you know, November being in December being quite rubbish months, apart from maybe, you know, celebrations and things like that. So almost some of that is the opposite of summer, because people just get quite joyous when the sun is out.
Dr Nikos
Yes, yes, yes. I don't know, if you do any, any pre cooling. So there's been a lot of discussion. Before the exercise. People have looked at it, you know, whenever you do studies, you do two type of studies you do the real life. And you say, Helena can you run and tell me your experience where it is, but also, people have done it a bit more robustly they can done and they can question, you know, they can measure the recording. So they have taken a number of people, they have put them in a in a cold environment, I don't know 17 degrees, or naturally, they haven't done the studies with putting one leg one arm or immersing in cold water, and then do your your exercise. And they found that there is significant change in the exercise ability and how much your heart reacts later on, based on the pre cooling. So a number of people will say that look before you start your 10k have your air conditioned or been in a cold room and then go and dip, dip your leg or your arm in a in a bucket of cold water. And that can act as you know, we don't know exactly how it works, but I'm sure soon we'll find out that it can have an effect for the next half an hour after you you know, what is it? You know, you would expect or you know, how much will it last. But people have found that even you know, half an hour later or an hour later, it will still be different of the people that have…they have not done this pre cooling.
Helena
That's really interesting. So I'm supposed to go out for a run and at the moment training for a half marathon. So tomorrow I am supposed to go out for a run. So maybe what I'll do is I'll try and do one of those really cold showers beforehand. And I can report back and see… actually, speaking of research, because you've done a bit of research into different heat sensitivity, you want to tell us about some things that you have looked into and what you've learned.
Dr Nikos
I mean, we did a number of you know, a number of different aspects of research. And you know, I have to say that I haven't done that the last couple of years. And so what an interesting thing that has not been, you know, we have asked people actually, so what's happening with, so we have asked the questionnaire, and we send it to people in Australia and America and in Europe. And certainly, irrespective of wherever they were, I don't know, half the people with multiple sclerosis, they report that they're suffering from sensitivity to heat. So, whereas, you know, the percentage was almost 10/15% of the people that they said that I'm cold. And it's interesting, and there are a number that were sensitive to both. And as we said, you know, with the fatigue, that you have experienced fatigue and weakness, probably because it's, you know, it's, it's so they're having such an impact in everyday life, they say that, you know, the particular the weakness of the legs are probably the ones that have reported more prominent symptoms caused by the heat, but the heat, and, you know, when I was in the cold as, as you would expect, cramps and poor walking, and again, some fatigue was made worse by the cold. And exercise exactly, as I said, you know, everybody says, there is so much benefit in doing any exercise, but if I'm exhausted afterwards, and, you know, become, you know, some of the symptoms with a heat generated. So this is where, you know, then all the questions that you were asking, So, how do we do? How do we do? How do we get the exercise without necessarily, you know, suffering afterwards, because, of course, you're aiming to do the exercise, you're aiming to do cardiovascular things, but you don't want to be suffering. And most of the people, of course, they're wearing light weight clothes and breathable, and there is a lot of discussion about, you know, can we manufacture better clothes, that might get rid of the heat that we generate in the same time, you know, reflect back some of the heat. So there is a lot of active research, but I haven't seen it in my clinic, really taking over. So this cooling garments, you know, the, the, you know, the technology is changing, and in five years, or 10 years, and we'll cover significant more. So there are a number of cooling garments that they are advertising, but you know better Helena, did you have people using it too? Do you have any?
Helena
I have not used any myself, but I've been thinking of looking into it. So when we were asking again, when we were asking these questions, there was somebody who posted a picture of a cooling vest that he was wearing, it almost looks like, you know, Kevlar, like he was our police, you know, that kind of thing. But that bulletproof type thing. But he said he was fantastic. It really helped him. So I think it's interesting, the cooling scarfs we hear quite a lot about some people have spoken about the cooling mats, they generally sell them for animals. So I think it was quite funny, because a few years ago, when we were asking for tips, somebody said I bought one for a very large dog and just sat down on it myself. And I thought, Well, why not? You know, but yeah, I think I think I'd like I like the idea of trying this pre workout cool down. And I think that would be an interesting one. Because quite often is that change in and I think we spoke about that on the cold podcast as well, that when you go from inside, and it's nice and warm, and then you go out and you get the shock of the cold. It's almost the opposite, though in the summer. So I think I'd like to try something and it feels like that which should be, you know, the clothes companies or the big exercise…I don't know Nike and Adidas should be all over that in research
Dr Nikos
At the moment, because of course, it's relatively niche. I can imagine, you know, there is a lot of investment that you know, they will appear at price is that most of the listeners will say What are you talking about? I suspect the price because it was it was you know, 20 pounds or 30 pounds. Let's try it then you say I'll give it a go. If you see something advertised for 200 pounds, then you say pffft, you know, you know how much the government's you know want to try. So the other thing about the exercise I think I found that the strength exercises which you know, there is a bit of a debate, you know, how much strength exercise should we be doing and how much I aerobic but the strength exercises usually are less affected by heat. So the elevate the temperature, that elevates and exercise that are affected more about the ambient environment, more of the cardiovascular, the aerobic exercises. So, you know, I'm not saying that they are not affected by the heat, but you know, so most of the people, I think, recommend, you know, it's good for you how to beat a few times, and it's good for the cardiovascular system. But the muscles also need to build up. And so a couple of sessions of strength exercise, you know, whether it's five minutes or 20 minutes, it's individual is different, but it will, it will be useful to do your exercise, despite your sensitivity to heat, then it's a matter of experimenting again. So to suit you better.
Helena
I find I sometimes do some weights and kettlebells, I tend to go out in the garden and do it early in the morning. So I don't know what my neighbours think of me, but grunting and swinging things around. But I do find that yes, that makes a difference as well. But I wouldn't be able to do it in the middle of the day, I don't think because everywhere in my house is too hot. But if you go to a gym, then that might be different. Because you will have a air conditioning hopefully,
Dr Nikos
Yes. I mean, the bottom line is that the cooler garments or whatever, in the UK, yet, we do not have much air conditioning, you go to tropical countries, you go to the equator, and you'll see that every building has the air conditioning, operating better. And certainly I've had patients that they have installed air conditioning system, because you know, as soon as you get into May, and June, you can have, you know, some people are seriously affected. Some people have given up their jobs, because the it is so hot and it is unbearable. And if you operate in an environment that you know that it is normal temperature because of the air conditioning, then you can avoid deadly ….. And I told you that I was very, very impressed since you know, I can advertise another podcast with the employment in MS one of the best podcasts that I have listened to recently.
Helena
We enjoyed that one. No, I think that it was. But yeah, again, if you're impacted at work, and it's really hot, actually where MS trust is we have a lot of big windows in the building we're at. And one summer when I was there, the air conditioning was just completely broken. And it was like working in a greenhouse. And I just had to go home. And just because it was like, I don't know, I couldn't even string two words together, because it was so hot in there.
Dr Nikos
I remember, you know, your guests, the Employment Advisor was talking about the reasonable adaptations, and everybody talks about the reasonable adaptations, then, you know, I think most of the people when you talk about regional adaptations, investing, they will say, I did the toilet to be nearby. And you know, having a lift as opposed to stairs. And then and then all of a sudden lots of people pause and say, well, what's the reasonable adaptation? You know, air conditioning, recovering some of the rooms? You know, I'm working in the hospital here. It's unbearable. We have some fans. I don't know if we, if it's legal to have the fans here. I don't know, have they been tested by the electrician?
Helena
I find that also with fans, because I think I was given a fan in there that my eyes go really dry. So I'm not a fan of the fan. But if I have to have them I will debate or quite often get bit headachy and dry ice from them. So air condition is a little bit better, I think because at least it's not sort of straight in your face, as the fans have to be to cool you down. But yeah, I think definitely something that would be a reasonable adjustment to ask for if you're in an office that's boiling.
Dr Nikos
Yes, yes. I mean, yeah. You know, you mentioned earlier on before, if there is any adaptations, if, you know, the reasonable adjustment would be to say, for the next week that it is exceptionally hot, you know, I prefer to work from home and to when it's less of an issue, then I can participate in the meetings coming to the office and so on.
Helena
Yeah, it's a funny one that you always see discussion not so much in the world of MS. But you know, at schools and people that have to wear uniforms, whether they are trying to get to wear shorts, but they're not allowed to have shorts, they have to wear their shirt and tie in the long trousers. Coming from a country where we don't have school uniform. I always feel so sorry for my kids when they have to be dressed in all these things in heat because it's a bit of torture, I think it is.
Dr Nikos
Every so often you see that? This is terrible of me that coming also from another country. You see the soldiers of the Queen there with the, you know, standing there for hours and every so often, one is dropping down that this is torture.
Helena
Yeah, no, it's and I guess in some ways because we're not used to the heat over here. It's but we're, you know, with climate change is just gonna get worse, isn't it?
Dr Nikos
I think so
Helena
Can heat sensitivity come and go? Or if you've started to be affected by heat this is sort of going to get gradually worse or…
Dr Nikos
You know, I'm not aware of a study? I mean, how can you do this study, I don't think this study exists. So it's not study would have been for Helena to have a sensitivity to heat at the age of 28, fill in a questionnaire at the age of 30, fill in a questionnaire and it's 50. And, of course, your perception of what's acceptable, what's not acceptable, your adaptation, the things that you were doing in your 20s, probably you don't do it in your 40s. And these. So certainly, I have seen people that they complained a lot about this being a major symptom, and others that they have settled down afterwards. So I don't think that we can say that, Oh, you know, I have this pain off my left leg for the rest of my life, I will have the pain. So neurological symptoms do change. And, you know, I've seen it, change it and enhances stability, and I expect, expect it, you know, it's not a fixed it's not a fixed for forever.
Helena
And I guess also when you sort of expect that okay, with getting hope now, you might kind of prepare yourself, okay, well, I can do these things. And in the same way, we talked about the pseudo relapses, when your newly diagnosed, you get very scared of it. But the other time, when you've kind of got up a little bit more used to how your body reacts to infections, or I don't know, periods, all these things you can kind of get well actually, no, that's, it's this time of the month now. So that's why my arm is suddenly tingling. It's not a relapse, but yeah, it can. MS can be such a blur, especially in the first few years.
Dr Nikos
Yes, yes. And I think it's the idea of listen from your other friends and your other people that they have MS pick up the ideas, everybody's individual. So yes, we do have heat sensitivity, we do have pain, we look at fatigue, it doesn't necessarily need to affect us all exactly the same degree and be prepared to find what suits you better. So the textbook is not going to tell you how you feel.
Helena
No, I exactly. And I mean for the people who feel fantastic in the heat good on them
Dr Nikos
Certainly, I can see the fear of what's happened with all my colleagues in the meds gone now..No. Go back again.
Helena
So the final question really then have you got any good tips to share with people with MS who are affected by the heat?
Dr Nikos
I think that is a more you know, I can say it as a tip. As a neurologist, I'm sure your experience of coping with the heat as a patient with a MS is much more valuable. The things that you said you know, going for your exercise, doing the things early in the morning, rather than in the middle of the heat, you know, your light clothes, you know, the tip is probably exploring.. Is there a swimming pool and you know, nearby that you can use and you can do your exercise if you find that the heat is you know, it could be purely for the fun you know, just enjoy it and then you know the weights you know, weight training seem to be more tolerated than the aerobic and cardio. So these are kinds of things but get you know, air conditioning is not that expensive
Helena
when it comes to drinking water, because quite often we get sort of reminded that we need to drink water
Dr Nikos
and drinking cold water. I think my daughter for some reason got fixed in your mind and start drinking cold water we put in the winter, cold water in the fridge and it seems to be making a difference. So we're saying the other time that there was some studies that you were drinking cold water and they were measuring how far they can see some cyclist and the significant improvement of the performance purely on the cold water they are drinking despite the central core temperature no changing. So if you if you have the opportunity to drink cold water, then it seems to be beneficial in ways that we don't fully understand. But most people find it beneficial.
Helena
I actually did think of you when I was running at one point because I have a hydrate hydration pack. So I carried my water on my back. And obviously because my body was so warm, the water went warm. So it wasn't until I got to I think six kilometre well, you actually got some water in stations, so there was cool water. And I thought, let's see if it makes a difference now. And my gosh, it really did it was I mean, what went over my head and then the other one drank but it was yeah, it felt like being refuelled. You know, it was like second wind. Definitely.
Dr Nikos
You need to go next time. You need to have somebody in the family, the friends running behind you and then taking your station back to something cool with lots of ice cubes in sight.
Helena
Yes. Just need one of those little trolleys next. No, I think you know, cold water. I mean, it's it's an easy fix, isn't it? I I've seen so many people say put your feet put your feet in cold water. So I might I try that under my desk works as long as it's not close to the electricity. Yes, yes. Health and safety and all that. Thank you so much for being on and yeah, I'm gonna go and sweat in my kitchen for a bit.
Dr Nikos
Use your the, you know, the bucket of cold water for your feet? Yes. Lots of ice cubes.
Helena
Maybe I can get some very big boots and just fill them with water and ice cubes? Absolutely, absolutely. Some welly boots.
Dr Nikos
It has been a pleasure
Helena
Thank you so much. Oh by now if this was a commercial podcast, here's where there usually will be an ad break. But as we're charity, we don't do that. So instead, we like to take this opportunity to tell you about some of our resources for people with MS.
Emma
As well as an A-Z entry on temperatures. We also have an assay expert article where people with MS share their top tips on staying cool. Head over to our website and search for heat or look in the show notes in the description of this episode. So just before we move on to what Dr. Nikos had to say, We'd actually like to share some tips from people with MS themselves. They kicking us off, Sue said that using a cooling neck bandana, which is pre soaked and then kept in the fridge is actually really useful. Someone else sent it just simple things like drinking plenty of water. And also if you like to do exercise, or going out in the day to get like a bit of a fitness boost. Doing that earlier in the day can really help just before the sun comes up. So someone said that they tend to start between eight and 9am. And that really helps and the exercise bike and are in a north facing room. So obviously you're not getting the sun so much that in the day, they haven't opened windows and fans directed at that. And plus wearing a cooling bandana and drinking water constantly work well.
Helena
I find that I have to get up even earlier because I tend to do work in our conservatory and it becomes so hot yeah, it's not how I want to begin. We'll go outside in the garden, as I've mentioned when I was chatting to Nikos. And Joe said my fatigue ramps up my bladder goes into melt down and my joints are very stiff. So I tend to stay indoors with doors and windows shut until the sun goes down. I also have a neck fan which really helps and I drink iced water and other thing that Nikos was talking about. Other than that, I just grin and bear it the best I can. And Paul said hot weather drains my energy total fatigue for long periods resulting in my legs feeling particularly weak. Feet and ankles also swell more than usual. And so he opens windows, puts his feet up, raises them and put the fan on into the room to try and cool the air.
Emma
So this is an interesting one actually, Martin wrote that he finally took control and got himself a water filled vest. Martin says I tried to place him in the fridge initially, but the sudden temperature change actually created more issues for his body. So now Martin keeps that at room temperature just with some cold water in it and it's actually really amazing.
Helena
So that was actually called sensitivity and heat sensitivity. Action in one then because of the ratio cold shock to it.
Emma
Exactly. Which I think Niko's almost touched upon in the last he mentioned the cold sensitivity because where sometimes you're so busy trying to cool down or warm up from one of the some of the types of sensitivity that you actually go the other way and make yourself too cold or too hot.
Helena
Yeah. Yeah, so other people also spoke about cooling garments as conveyed via Nikos, Andrea said I use fans special cooling neckties and headbands and sweat bands soaked in cold water. Stay indoors. was with curtains closed. And where linen and drink lots of drinks. Linen, I guess it's a good call.
Emma
Yeah. And so I actually used to work at a clothing company and we used to talk about the benefits of Linen quite a lot to say that linen takes the sweat sort of off of you. And because it's natural and it's breathable, it's really good yeah, linen or other sort of natural fabric did and things are really good.
Helena
Finally Jo said. My thinking is affected by heat. So I wear a hat that absorbs water and cools those miss very firing wires. So at water fatigue is worse. So I guess actually having something cold again, like with the cold headbands, and all things would be quite good. Good one.
Emma
Yeah, so definitely lots of different tips to try out there. I think sometimes it can be a case of trying a few different techniques and seeing what works for you. And obviously, as someone who I think you suffer a little bit from heat sensitivity, don't you Helena and you go out and do exercise. Have you got any tips that you found really work?
Helena
Well, apart from the things that I spoke to Nikos about like you're going up earlier and things like that …Can I find like, the best thing you can do when it's really really hot is to go to a cool supermarket. I don't know what they feel like in Sainsbury's when I'm walking up and down the aisles there. But actually, it really cools you down for a while, because it's just so kind of, you know, cooler than you would say in here. And we will we have air conditioning, but that's actually like, yeah, to the point where it actually goes a little bit cold. But yeah, otherwise, I think, you know, drinking the water, I think it really makes a difference. Like if it's cold. If it goes lukewarm, I find like that doesn't mean yes, you get a little bit less dehydrated. But it's not the same as that because you kind of want to cool your insides as well, I think. So I think it's yeah, it's those bits that there's sort of springs to mind. Find the shade. If you're outside, don't go outside in the middle of the day if you don't have to, because that's not always a good thing. And then I find like, so yesterday, it was really, really hot. So I feel like even though the night was okay, I still feel a bit tired today. So you just have to sort of, you know, pace yourself a little bit.
Emma
Yeah, and think, you know, when you go abroad to countries that are more used to the hot weather than in the UK, they have quite a few like their way of life. It's really interesting. Not interesting. But you know, I feel like we can learn a lot from them. Yeah. Taking it a bit more easy in the middle of the day, if you can, yeah. And yeah, trying to get like maybe some more of those more heavy tasks done in the morning or the evening when it is a little bit cooler.
Helena
Yeah, I think you know, we're talking about my running and things like that. And I'm definitely during this time of year, I had to start it much earlier. I just like to point out when I was talking to Nikos about that it made it sound like a 10k run, it's a short run, it's not a short run. It's just for me, I noticed symptoms more if I've been out for a really long time rather than the distance because I'm a slow runner. So it takes me a long time to be out for a long time. And now last year I was training for the London Marathon. So I was out for a really long time. So I had to get up super early, because otherwise my leg would go quite weak and a bit of fizzy from it. And the other thing that I find that Nikos was saying that's so interesting is that you know, for the people who enjoy it, because you don't want to make them feel bad, obviously, as long as you put your suncream on and you know, it can be sensible about it. I think, you know, if you enjoy it, and you feel better than your a lucky one, you should enjoy it. But I think a lot of it does come in a little bit with the mood as well. So when you go, especially if you go abroad, you'd have a pool, you have your friends, it's fun. And it's yeah, in the same way, as we were saying in the cold sensitivity one that heats outside and it's gloomy, and it's dark. And you know, and I think yeah, it's all this sort of feelings goes together with whatever your body does when it's hot. It's sort of a mixture of emotions and actual physical things that is happening to you. And we actually had some questions sent in on the voice notes via WhatsApp as well. Should we have a listen? Yeah,
Caller
heat already exacerbates my MS symptoms as it is. But I just noticed that when I drink alcohol, it seems to make it a lot lot worse. I was just wondering if there's kind of a medical reason if it's something to do with the inflammation.
Helena
This was an interesting one. So I because we got this message after I spoke to Nikos otherwise, I would have asked him that. So I went and asked our information team just quickly, and they say it's quite a complicated one. And but there has been a little bit of research done into it. And it was sort of hint that it depends on how much you're drinking, what you're drinking and where you are. But say for instance, if you drink sort of things like drink drinks, you might go to the toilet a bit more because obviously it irritates your bladder, so you are not retaining any water so you've actually dehydrated even if you're drinking the alcohol so that makes you it's harder for you to sweat and therefore your core temperature will be warmer. So that could be one thing. And I suppose also, the combination of alcohol and very hot sun on your face is never really a good, good idea as far as I know. But yeah, I find it, it would be interesting to know if this is something you were affected by or you noticed, you know, let us know in the comments, because we'd love to know more about it.
Emma
Yeah, yeah, I think it's definitely one that's like experience. One experience may be very different to another. Sometimes you might drink more or if you're like, out with friends in the summertime or things so that yeah, it all has like a knock on effect, because it's warmer, you might drink more, but then you might be more affected by the heat sensitivity. Yeah, because the heat, it's warmer.
Helena
And I suppose if you're if you're drinking it to quench your thirst as well, you might get you know, a little bit on the Johnny side, and then might get a wobbly. In other ways, as well. But yeah, that's an interesting one. So yeah, tell us more about it. If you are affected by it. Shall we listen to the other one. Yeah.
Caller
I would just like to know, in terms of exercise, and heat sensitivity, in particular running, whenever it gets temperature rises to over sort of 18/19 degrees, I find that when I'm running, I start to trip, I almost get my foot drop, really, when I'm running, I could definitely do it other times. And also then if I try to go into a walk, and my cadence is affected by the heat, and I seem to not be able to coordinate my legs properly. So that's just something I've noticed in the heat when I'm running outside, and doesn't happen if I'm in the gym, and I work out and I get hot from working out if that makes sense. It just seems to happen when the actual ambient temperature outside is warmer. And I just wondered why.
Helena
Thanks. I think this is a little bit what Nikos was touching about about almost having like a pseudo relapse when when it gets too hot. So often, the symptoms that you sort of affects you, if you're having a relapse, or if you had in the past or like I've seen with myself, I get a bit of a fizzy leg or vertigo. And I guess, in this case, if she normally has a bit of foot drops, then probably that the sort of prolonged exposure to the heat will make that almost like a little pseudo relapse happening. And, again, if you're in a gym, if it's air conditioned, I guess it sort of cools it down a little bit. It's harder to hide from the heat while you're outside. It was great to actually get some voice notes this time. And we want more of that for the future ones. And so keep them coming. And thank you so much for everyone on social media for sending in things. It's been Yeah, it's been really interesting to read all your comments, and I hope you found some answers in today’s podcast and if not, then keep on talking to us.
Emma
Yeah, definitely. It's been a really popular topic, as I'm sure you can imagine, if you experience heat sensitivity yourself. So remember that MS. Trust is here for you. If you've got any questions about whether they're heat related or not, you can contact the MS trust inquiry service between 9am and 5pm. That's Monday to Friday, except on UK bank holidays. And if you've got any questions about life with MS, they should be able to help. They're available on 0800-032-3839, or you can email ask@mstrust.org.uk. And someone will get back to you as soon as possible.
Helena
And our next podcast is going to be on relationships and MS. And this could be like romantic relationships, family connections or even friendships. We get a lot of questions regarding this topic, including what it's like to date with MS how to talk to a partner or family member that might not understand the condition or even comments about fears those relationships with others will change after the diagnosis. So there's quite a lot to talk about. And so if you have anything to say on that topic, or want to ask about we'd love to hear from you. And your comments might even be featured on the episode. So if you could get in touch with us via WhatsApp, you can remain completely anonymous. You can drop us a voice note or message via WhatsApp on 07458303326. Or alternatively, you can email mystory@mstrust.org.uk.
Emma
Just worth pointing out that our WhatsApp messages are actually monitored by our MS helpline to you. So if you've got a question that needs answering about life with MS or the condition as we mentioned before, just contact them directly 0800-032-3839 or that email address which is ask@mstrust.org.uk.
Helena
And you can also find the MS trust on Facebook, YouTube, Twitter and Instagram. And you can find this podcast on Spotify, Google Podcasts, Apple Podcasts and Amazon Music and now also on YouTube. If you want to look at us with faces get in touch and like they say like and subscribe. And we'd like to say a big thank you to Ant Chapman audio for the music of this podcast.
