Nick:
Hello, everyone. I'm Nick.
Helena:
And I'm Helena. And we both work at the MS trust UK charity for people affected by MS. We're here to make sense of MS.
Nick:
Earlier this month, we recorded a live chat on Twitch and YouTube with Claire from our information team about MS and fatigue. And we decided to bring it out like this on our podcast, as well like a sister show to breaking it down on our regular show. So this is going to be called multiple sclerosis, breaking it down live.
Helena:
And fatigue is one of the most common symptoms of multiple sclerosis. It's described as a feeling of exhaustion at that's all out of proportion to any activity that you have been doing.
Nick:
And during our chat with Claire, we took questions from people who were watching live from our different platforms. And we also had a call out for questions from our social media channels as well. So we answered what you will wondering in this interview. Anyway, without any further ado, let's jump into the interview with Claire and Helena.
Helena:
We are going to be talking a bit about fatigue today. So if you have any questions, do pop them in the comment fields. And we'll try and pick them up. I'm joined here by Claire from the info team here at the MS trust. And also Nick is off camera. He's going to be picking up the questions that you are hopefully posting in our comment fields. But first, can I just hand over to my colleague, Claire, and she can talk a little bit about who she is and why we can talk about fatigue today.
Claire:
Sure, sure. Hi. Hello. Hi, everyone. Yeah, so I'm Claire, I work in the information team here at the MS trust. So we're the team that looks after the website and all the books and publications that we do. But some of us also work on the helpline as well. So we're the people. Some of us that will be the people that pick up the phone, or answer your emails, if you have any questions. And I am here today in that capacity, I'm not a medical professional. And in fact, none of none of the information team at the MS just aren't medical professionals. But we're information professionals, we are all about providing the right information for you, to help you make your decisions, we're not about making decisions for you, or taking away any of that any of your personal agency or influencing you in a way that your own health professionals would find problematic. So we're big believers in shared decision making, you know, your medical issues about things that you discuss with your health team. But that doesn't mean that there's not a really important place for inflammation as well in this space. And for something like fatigue, which affects so many people with MS. I don't think it's very surprising that there's a lot of non medical things that people have come up with and to help themselves and help others. And I think there's lots of hints and tips that we can take from the MS community. And we can maybe find some of those things that work for us. I think it's fair to say that not everything will work for everyone. But yeah, we're going to explore that a little bit today.
Helena:
Yeah. And I guess it's fair to say from the helpline that fatigue is one of the most asked questions that we get.
Claire:
Yeah, yeah, it's definitely in the top 10. It's often not the thing that causes a crisis moment for somebody you know, it's not, not like perhaps chronic pain, or a really upsetting situation at work or something like that, which are really common questions as well. But fatigue is I think it's fair to say one of the most reported symptoms, yes. And it has a huge impact on everything else. The knock on effect on things like pain and mobility and employment status and your relationships and your family. And I think most of all mental health as well. We did do a survey, and we have a survey live right now. So look for that on our website. And please do fill it in. But the survey that we're doing at the moment is indicating to us that fatigue is one of the things that has a big impact on people's mental health. And I think people beat themselves up about it, they think, Oh, why can't I just get up and do stuff? Why can't I do the washing up? Why can't I go and play outside with my kids? Why can't I finish this task, and they get really hard on themselves. And that leads to a kind of a spiral and mental health as well. So that's, you know, we want to make sure we sort of had that, that kind of thinking of you. You really do not need to feel guilty for feeling fatigued. It is incredibly common is part of your MS. And we can explore that a little bit more.
Helena:
We've had the first person saying hello.
Claire:
Hey, nice to meet you.
Helena:
So should we just very quickly talk about what does why does it happen in MS? Why? Why is fatigue a thing?
Claire:
Well, there's, there's definitely a kind of primary fatigue and a secondary fatigue, I think it's fair to say. And the evidence suggests that the D myelination of your nerves slows down the messages that are getting around your body, from your brain to your two muscles on your on your body. And so, and that kind of slow, slow communication can feel like it can be a big part of the fatigue. But I think in that kind of primary fatigue and then get be made worse by heat and by stress, and all the other things that would make any other MS symptom worse, and, again, quite variable for individuals, but certainly, you know, certainly a thing. And then there's a secondary aspect of fatigue. And that might be where your MS is causing you to have sleep problems because of broken nights or spasticity issues or something like that. And then you have broken sleep and you don't feel rested when you wake up. And that is just, you know, on top of any existing primary fatigue that can just make the whole thing much worse and much, much more difficult to deal with. There are some MLS drugs that do influence fatigue, badly as well. Again, it's a side effect of some drugs, which are used for orphans for spasticity and spasms, particularly that they can have that kind of general depressing effect on all sorts of muscle active nerve activity. But I think it's fair to say that, that's again, it's a bit hit and miss. It's a bit variable.
Helena:
I know for instance, I've taken drugs for my vertigo, and obviously those are the ones that said do not operate heavy machinery while you're leaving. So it's like, Yes, I'm not feeling woozy, but I am feeling sleepy.
Claire:
Yeah. Is that better? Absolutely. Yeah. But I guess you know, being able to walk without falling over? Yes, is a big thing. But if you know that you sometimes you didn't put up with those side effects? Yeah. On the flip side, yeah.
Helena:
We had a question on Instagram, which was, Does it ever stop?
Claire:
I think it's fair to say that it can come and go. And that you can manage it and you can learn to manage it. I think I don't, I would imagine that if you are a little bit prone to fatigue with MS, you're kind of always be a little bit prone. And let's say it won't take much like stress, hot weather and underlying infection to bring it back again. But I think is there is really good evidence that rehabilitation, that sort of occupational therapy kind of support can really help and can really help you kind of get a handle of it and live with it in a way that it's not impacting you to such an extent.
Helena:
I think when you're living with it, and especially I don't know, you know, people are all different. But this time of year, I find I have quite a lot of fatigue. And I was when I walked into work this morning, and I saw some there were some flowers out and it was lighter. And I suddenly thought, I'm not feeling fatigued. And it's weird, because then you're actually noticing those moments when you're not feeling fatigued more than because the status quo is that you are feeling fatigued.
Claire:
Yeah, no, absolutely. I mean, some of the ways people describe fatigue, I think are really evocative, aren't they like wading through treacle or I feel like all my clothes are made of lead or, you know, this feeling that you're just always carrying a bit more or there's a huge barrier to sort of stopping you moving or working or thinking.
Helena:
So this is sort of a little bit similar with does it ever stop it? Can you beat them as fatigue? Is there anything that we can do to it when we spoke a little bit about medication that causes but is there? I mean, what approach..
Claire:
Well there's a kind of the set the successful approaches for dealing with fatigue and sort of getting, getting to grips with it, work around two things about making sure that your kind of energy supply is as good as it possibly can be. And then there's making sure you don't use it up on the wrong stuff. So it is about learning what you're like learning how you respond best, and about making those sorts of adjustments. So for example, people with MS, or other kinds of fatigue often get into a bit of a boom bust cycle. So you think, Oh, I'm not feeling fatigued today. Excellent. Right? Well, I'll strip the wallpaper off the second bedroom, I'll mow the lawn, and I'll write that best selling novel and I'll do it all today. Yeah, I mean, maybe not all those. But you know, I do all the stuff I'll do all now while I feel good. And you do a few things and then you're knocked sideways for three days afterwards. And actually, that can be really hard because it's you this having to hold yourself back when you are feeling good in order to make sure that you are feeling good later, and you can kind of keep that level. So, you know, things that you can do to make sure you're, you know, your energy supplies are really good. I mean, the obvious ones, are you eating properly? Are you getting the right nutrition? Are you getting enough fluids, it's kind of, sometimes it can be easy to overlook. And sometimes it can be really hard to, you know, to cook a nutritious meal for yourself, when you're feeling really fatigued. And it can you get a vicious circle that way, and you just go for tea and toast because it's easy. And you know, you end up finding that your actually missing quite a lot of important aspects of your diet. So that's, you know, first thing, let's rule out any kind of deficiencies or poor nutrition. Are you getting enough sleep? Are there things you can do to make sure your sleep isn't too disturbed? Are there symptoms that trouble you at night? Whether that's getting up to go? Go to the loo? spasms at night? restless legs, that kind of thing? Oh, yeah, that's an issue. Here. We got a question there from Menalia - issues with family not understanding fatigue that is so, so often new, they get so bored, what you dislike that you're just sitting there probably mean, you can't get up and do this.
Helena:
It's just a little bit of tiredness.
Claire:
But yeah, we do. And I think when you are a person who doesn't have MS, and you're a bit tired, you can push through a little bit, you're all you can certainly test. And you can say, right, come on, get up, and you do get up and do the thing and think, Okay, now, maybe I wasn't so tired. And actually, maybe I can trust that I will get a decent night's sleep, I will wake up refreshed. But with MS fatigue, you don't have that you don't have that knowledge that you're going to wake up refreshed, you don't have that knowledge that you're going to get up from your, you know, afternoon rest and feel able and it's that uncertainty, I think that’s really tricky.
Helena:
It's really hard to explain.
Claire:
So how do you explain it to your family? I mean, you know, you can point them to the resources on the MS Trust website, you can point to our very lovely book, you know, Living with Fatigue - a guide for people with MS. And we have got some we have got some information in there about how people with MS can talk to their families about that.
Helena:
I guess sharing information as well. So if you, for instance, we have a really good video on our YouTube account there, which has got people describing how fatigue feels for them. Yeah, so if you, you know, if you feel like you can't share it directly with people maybe share it on your social media or so people can sort of understand that this is something that you're living with. And it is different from just feeling tired.
Claire:
It is different from just being tired, and it is, you know, it is more there's more to it than that. But you know, what, if it's getting, you know, enlists help, yes, enlist them to help, you know, if you can your family, your partner, your kids, can they be doing some of the chores, which you are otherwise, taking up your, your precious time and energy, because your energy is precious, and you have MS fatigue, you need to be absolutely thinking about the things that matter to you, what are the things that I really want to do that make me feel good as a person: make me feel connected to my, my community, my family, you know, I don't need to do the washing up every single day, if it's that, or speaking, or getting out to speak to a friend and have a coffee with them. You know, it's about saying, actually, it makes me much happier to feel like I'm a good parent, and I can spend some time with my kids after school. Whereas, and if I have to, you know, if I have to not do other stuff to prioritise that, then I do. So it's, it's that balance, isn't it?
Helena:
I would suggest as well, if you got an MS nurse appointment or so to actually bring along the family member to sort of have the nurse explained to them because sometimes it helps when it comes from I think special help.
Claire:
Yeah, and seeing that a health professional will take fatigue very seriously as well. But they're not they're not brushing it off. They're not saying oh yeah absolutely. And that there are courses that your health professional can refer you to something like the facets course or a similar fatigue management course. And you know, you don't have courses for stuff that don't exist, you know, that are just in your mind or you're making it up or you're milking it somehow, you know, so…
Helena:
And maybe get that book and have it laying around the house in a suggestable way!
Claire:
Yes exactly, you know, we didn't go to all the trouble of writing this for a made up symptom. It is one of the most common things in MS and it is invisible, and that makes it really hard to communicate about. So anything we can do to help with that. We want to be there.
Helena:
But speak up. I would say don't you…?
Claire:
Yeah, I think you know the things like planning and delegating that's about that. We talked about filling up your energy supplies, but the planning and delegating side is about really using it why easily. And, you know, the MS community have given us lots of tips on that from, you know, you don't have to stand up to chop vegetables, and is that going to tire you out, sit down and chop your vegetables and save your energy for just standing at the stove. While you're there, why not do a double batch and then you've got something in the freezer for the days where you absolutely can't do anything but defrost something and eat it. You know. So it comes down to thinking ahead, asking other people for help delegating the chores to people that have got spare energy, saving your energy for the stuff that is about the only you can do and only you want to do and you know is about important and precious.
Helena:
And try not to feel guilty about it's like if I get my kids to help out at home, I can feel like well, I'm setting them up for life with some life skills anyway.
Claire:
Absolutely. I think that's a brilliant idea.
Helena:
So are there any medical treatments that we can use for fatigue? This is a question.
Claire:
It's a tricky one, it is a tricky one, there are two things that you might have heard of as medications for fatigue. One is Modafinil, which is no longer prescribed anymore. But there might be some people who are still in the UK that is there might be some people who are still taking Modafinil. But these days, it tends only to be prescribed for people with sort of excessive sleep sleepiness, sort of narcolepsy, I think the evidence is for MS. It's a bit mixed and not necessarily very effective. And the other one that you might have come across as Amantatan. That is, is licenced for MS. Fatigue. It's not often prescribed either. And even if it is, you might find that it doesn't really work for you probably only two people to five that take care find any impact. And it's not going to wipe out all the fatigue. But you know if your fatigue is incapacitating, if you've tried methods to really support yourself as much as you can and got your family supporting you. And it's still really, you know, really impacting your life, then I think is absolutely something you can bring up. But I think the flip side is also what other things are you taking that might be impacting your fatigue? Yeah, like vertigo drugs, like drugs for spasms, and, or low mood and things like that. So definitely, that there's also a space for having that kind of conversation with your health professional. Is there any kind of medicines review we can do that might moderate the effects of fatigue as a side effect as well as fatigue -full stop-.
Helena:
What about supplements? That was something somebody was asking on Instagram?
Claire:
Yeah, I mean, there's no real… There's really mixed evidence on this. Basically, if you've got a really healthy diet, there's no reason to think that you're not getting everything you need from a decent diet. I know that people take vitamin D supplements, they take B vitamins, and they feel that those are beneficial. If you can afford it, if you're happy to try it out that it's certainly safe to do so within normal limits. What I would say though, why not take a bit of a diary? Be a citizen scientist! Give yourself a couple of weeks die arising how you feel when the fatigues worse, when it's not so bad, and what you've eaten and drunk and done during the day. And then if you want to take a supplement, take it for a little while and derive that as well. Yeah. So you often hear people that say, Oh, I started taking this and it was instant, it made a difference. I think well, did it really? Have you actually got that baseline to compare it with? Sometimes we do convince ourselves? Yeah, but these things and I would just hate to think of somebody spending, you know, hundreds of pounds a year on supplements, they just need when you know…
Helena:
This can get very expensive.
Claire:
Yeah, they can get very expensive very quickly.
Helena:
I think we have a question.
Claire:
Ashley: always have a nap in the afternoons. Is this because of MS or because you're 50?
Well, it could be both. I'm nearly 50 I certainly feel more fatigued after the big meal, perhaps. So actually, there's there might be something around when you're eating a big meal. And the impact on how drowsy you might feel. But yeah, it could easily be your MS. Yeah, I would say it's quite hard to tease these things out aren’t they, as we said at the beginning, you know, working out some of the things that might be impacting like sleep and diet and stress of work or whatever, and seeing if you can kind of make a difference that way.
Helena:
But I mean, if it's helping for you actually then that's not the bad thing, I suppose because some people do talk about daytime sleeping not being so good.
Claire:
No, but I think building in rest period which is part of that? You know, if by having a nap at lunchtime, that means that you're functional in the evenings, then, you know, do it go that you're doing that, that planning that building in the rest period through the day, topping up your energy levels. So you've got some spare for later now that's definitely worth doing.
Oh, Menalia again: walking drawing and having a schedule helps.
Yeah, no. I was going to come on to exercise next actually. And it feels like the work you… if you're having bad fatigue, and someone says, you know if you've got outside and did some exercise. That was really help. And you probably feel like lamping them. Because like a how to you know how I feel? I can't get off the sofa. And you're telling me to go for a walk? But actually, if on the days when you feel able to you can do a little bit of moderate exercise. That is the number one DMD for fatigue, isn't it? Yeah, it really is. I mean, I know you find it really helpful.
Helena:
Yeah, I mean, for myself, I find that that's like the because I've tried, I tried some drugs for fatigue, I've tried also tried a bit of supplements and things, but the only thing that really works for me is exercise. And for me, I was a self confessed couch potato, I did not do anything, I know you got tired running for the bus. But it was very slow build up, it's taken very many years to sort of get myself into a routine where I'm exercising, not every day, but like, most mornings, I do a thing to set me off. And that keeps my sort of energy topped up, so I can work. And that works for me. And I'm gonna just say that, you know, it's different from different people. I know, some people can stomach the idea of exercise in the morning, but they're better off doing it after work, because then they get that extra boost of energy for the evening, so they can, you know, entertain or be with their family. But…
Claire:
It does make a difference, isn't it and I think I'd say it doesn't have to be doesn't have to be lots, it doesn't have to make you feel exhausted. You know, a 10 minute walk around the block that you build up to a half an hour walk over, you know, over a period of weeks or months. That's a really good thing to do. I think there's something about getting some daylight, really helps. Helping you really notice the difference between awake time and asleep time. And I did like your point about a schedule as well, because that sort of takes the effort out of thinking about the day doesn't it? And it's, you know, this is what happens. I've got my trainers by the door to stick them on and go for a walk or little run before. And I'm going to come home, and I'm going to have my breakfast, and it's all there and it's ready. And then I don't have to think about I don't have to use that emotional energy. Yeah, I think that's a really good really good advice, Menalia. Thank you.
Helena:
So we've spoken a little bit about diet before about, like how you actually set that, but are there any diets out there that sort of proven to help with fatigue, because this is something that a lot of people swear by.
Claire:
People come round to that. I think there's good evidence that a healthy diet with you know, that covers all the nutritional bases, is very sensible and helpful for people with MS for all sorts of different reasons. You know, having excess weight, having excess weight, having other health conditions, those are not going to help you MS, they're not gonna help you fatigue, they're not gonna help your other symptoms are going to make it harder to manage and treat. So staying as well as you can, is a really sensible thing. When it comes to people that put their you know, put their reputation behind a specific diet, a specific diet plan. I think those things are trickier. You'll hear testimonials from people who said they worked really well for them. And you'll hear quite a lot of people who said that cutting out meat or cutting out milk and cheese, cutting out something made all the difference for them. What you won't hear is from the people that tried it and it didn't work, and then they moved off into something else. So you're only hearing the benefits. From the people that it worked for. Now there's, if that's going to be some people are really drawn to that. And they say actually, I’m looking after my MS. I'm looking after me means for me, I'm going to be vegan. I'm going to look for Whole Foods. I'm going to be taking specific real care with my diet and I'm and that's part of my self care thing. And you know, absolutely no problem with that. I think that's a really good, positive personal choice. But I think also, if you think that the thought of giving things up like that is heartbreaking, It's going to impact your mood, make you feel like you're being punished for having MS. Then don’t do it. Don't do it. You choose how you choose what self care looks like to you. But I think a basically healthy diet, the right nutrients, enough fluids, not too much alcohol. Tea and coffee: Mostly fine in moderation for most people. This is something that does come up with a lot in conversations, doesn't it? And on our Facebook forum, people say: “Oh, is coffee good or bad for MS?”. I use coffee to help me with my fatigue and help me get up in the morning. But honestly, if these are and then some people say, Well, if I have coffee too late in the day, I can't sleep. So you know, you know you, your response to caffeine. I think if you have maybe an irritable bladder, perhaps caffeine can be a problem. But for most other people, if not anxiety, if perhaps not ideal, but for most other people. Coffee is good, it's helpful. And it's not just the caffeine, don't forget that tea and coffee don't just have caffeine, and they have all kinds of other traces of sort of plant chemicals, some of which seemed to be quite beneficial. So, yeah, don't beat yourself up if you're using caffeine as a way.
Helena:
Well, I mean, where you talking about having a diet?
Claire:
Yeah, absolutely. Does it make a difference? If you have a double shot of espresso at eight o'clock in the morning? Or does it help if you have that coffee after that after lunch?
Helena:
Or if you want to try a specific diet, maybe? Well, I'm gonna go vegan for these two months and then see if it has any…
Claire:
We do hear a lot of people that find that that reducing meat has helped them. And I think there's lots of other reasons why that can be helpful. But say it's not. There's not evidence. I would say that that's an essential way to eat if you have MS. Absolutely. So did I see Kevin just had a had a comment as well? So Kevin's had Guillain syndrome for seven years. He has naps, he has fatigue. Should he ask his doctor if he has MS? Oh, so Guillain Barre Syndrome is another neurological condition, that's usually can be a bit of an MS mimic. Yeah, can't it and you can have people that develop neurological symptoms with Guillain Barre, and they recover broadly after a couple of years or more. It can be, I think Kevin's right to suggest that might be worth after seven years, it might be worth having a chat to your neurologist or your doctor and saying that there are some residual symptoms here. I’m very, you know, very fatigued. Is there something else going on? Is it still Guillain Barre? How do you pronounce that? I think its Barre.
Helena:
My father-in-law had this. And then the question we had before about family members not understanding, when he had it he sort of came up to me afterwards, when he was out of hospital. And he was saying, I really understand what you're talking about when it comes to fatigue now. So yes…
Claire:
I would go back and check that Kevin, actually, I would speak to a health professional and see what they say, you know, if your still, you know, impacted by fatigue, after seven years, then it might be definitely worth looking at.
Helena:
We mentioned a little bit about fatigue can make other MS symptoms worse, but are there any sort of known triggers when it comes to fatigue? You mentioned heat, for instance.
Claire:
Yeah, so things that make your MS can fluctuate with things like the temperature and the weather, which is weird isn’t it? Now imagine having a having a condition that the weather effect, it's just it's, you know, it's crazy. But it's to do with how easily your nerves are conducting those messages, as we said, from praying to the body and in hot weather, things slow down. Sometimes in cold weather, obviously, people's other symptoms can be impacted. Things like mobility and pain and spasms and things can be negatively affected by cold weather. But if you've if you've not had fatigue before, or not very much, and it's suddenly got worse. And you haven't, there hasn't been a change in the weather. You're maybe not particularly stressed at work or have family complications making you worried on or upset. It might be worth getting a dipstick test (urine test) or mentioning it to a health professional. Could it be that you have some kind of underlying infection and for people with MS the most common infection is a wee infection. So yeah, if your fatigue has suddenly worsened, it's definitely worth raising that with a health professional. I would say.
Helena:
I think, you know, during the summer when it was very, very hot to me the fatigue for me, I was completely useless. But I know a lot of the non MS population was feeling it too.
Claire:
It’s not much better frankly, we're all sitting around with fans and our feet and cold buckets, cold water and anything we can do. But there's some great things like cooling blankets and little gel packs that you can put in the fridge and just sort of keep under your top or something around your neck. So yeah, I mean managing, for example, if you're if you're struggling to exercise because of fatigue and having a cold got a glass of iced water first can give you a little bit of the can sometimes get you to say Okay, now I can get up I can go for a walk. I can exercise in a way and I and then have that cold water to sip to keep it here too low, as well as sort of managing it that way that could be useful.
Helena:
Remember when we had Nico on the podcast, and we were talking about hot weather, and he was sort of saying that there's actually some research into not just drinking but actually having a bit of a cold shower before you go out as well. So your body is already cooled down a little bit to counteract the heat.
Claire:
Absolutely. I mean, we've known about hot baths, triggering worsening symptoms and MS for a long, long time. In fact, it used to be, it used to be one of the defining diagnostic tests, you know, did you suddenly lose your eyesight when he got into the bath? What doctor would do that? But anyway… But yeah, so if you're planning to exercise, if you want to feel a bit brighter, and maybe a cold shower, maybe that's your answer. There's something to be said for the cold water swimming and, and, and things like that.
Helena:
I guess that might be something to look out for as well. If you are thinking I'm going to start exercising and then suddenly you feel like you're really fatigued by that could be because you get too hot. So maybe try something that's done it in a gym in an air conditioned room, swimming or other things, and other things like that.
Claire:
Absolutely. And I think in terms of day time and making sure you've got ways to keep your office cool, your home cool. I know we've had, we've all had the windows open for a couple of years now, to keep infection risk low. But you know, it hasn't hurt to have that kind of cool fresh air as well.
Helena:
If you are struggling with fatigue, what's the sort of first point of contact that you should make? If you actually want to see if there is anything that can be done about it?
Claire
I mean, for most people with MS, the first port of call will always be their MS nurse. And I'll say, you know, it's an understood symptom of MS. For many people, it comes and goes, and it's something they live with as part of their MS. For over long periods. But I say if something is different, and it can be severely worsened fatigue, or any new symptom, or anything that gets worse, pop a message to an MS nurse, give them a ring, leave a message on the answer phone say that this is troubling me, it's much worse than normal. I'm concerned there's something happening. I think it's fair to say that they would be unlikely to sort of escalate that and think it was a relapse if it was just fatigue. So but that it might well be an indication of something else going on? Yeah. Your MS team want to know about any changes, broadly speaking.
Helena:
And as you mentioned there, I mean, there are fatigue courses and things like that, that you can sort of learn to manage, and there is always some tips in there.
Claire:
We've got I mean, this book we designed is basically a fatigue management course in book form. And after just the say, so what is fatigue? What are the causes of fatigue, how to manage fatigue, and then sections on building up your energy levels, and using your energy and then using your energy effectively? And I think that one of the benefits of doing a face to face course or a video course is that you will be part of a cohort of other people who are going through the same thing. And you can kind of share hints and tips and just have a little bit more support. It's so nice to have someone on the journey, isn't it even when it's a one of the difficult journey.
Helena:
People who understand what you're going through? Definitely, yeah.
Claire:
Oh, another question – Hi Ashley again, I was left in a hot tub for 30 minutes on holiday. Oh, man, I'm glad you had no ill effects from the heat.
Helena:
I think I've definite… because I love a bath. But I sometimes do the stupid thing of making it too hot. And then I can’t almost get out of it because I'm just so fatigued after and so it's like, come to the end of the day. Muscles might be aching from exercise and have a nice hot bath and then suddenly just stuck.
Claire:
If you want to wind down if you're going to do that and then have a lovely relaxing day and you don't have to do anything but and if you're on holiday and all you're gonna do is lie on a lounger with a book and a cold drink. Well, you know, why not? But I think yeah, perhaps being in a hot tub for too long at the wrong time. Time of day could make it hard for other things.
Helena:
We have seen a few comments online about now I'm trying to remember the said Wim Hof Method.
Claire:
Yeah, exactly. Exactly. The, you know, the ice and the cold and yeah, and things like that. I think there's some other supplements and things involved in that as well, I haven't looked into it.
Helena
I think it is just going into the water cold, but I’m going to have to look that one up.
Claire:
Adherence to that kind of methodology in that kind of, you know, and related things suggests that the cold water is really good for your particular, I think, a particular nerve pathway that stimulates anti inflammatory activity generally through the body. So it's not just for MS and MS. Fatigue, people might consider it for all sorts of other reasons. But we tend to people who are using that method have tended to think about inflammation as being a bad thing. And that it's something that Western lifestyles and Western diets tend to promote. And we sit around and we eat the wrong stuff and everything just gets a bit inflamed. And actually, maybe there's something in it that you know, there may well be, but if it works for you, it's fun to try. Don't go jumping into cold water without having somebody around you though. Make sure you've got, you know, the sudden shocks, like that can be dangerous to the heart.
Helena:
I'm currently following Liz who she did have a long cycle on her Instagram feed. She's doing a challenge that every day this month, she's going into a logh because I think she's in Scotland at the moment, and it looks very cold, but she's looking like she's loving it. So…
Claire:
Absolutely. I think it's a wonderful thing to do. Hello, Kevin, it’s lovely to… Kevin is thanking us for reading and replying. And we are very grateful for your comment, Kevin. He's struggling with his symptoms, and he's finding fatigue really draining. And we completely sympathise. And I think it's fair to say you're not alone. There'll be a lot of people out there watching this today, or watching it later on. Who will, you know, recognise that? And it can take you to quite a dark place, can't you? Because if it's so draining, and it's all what am I doing? Yeah, I can't get out. And you tell yourself, you're lazy. And you tell yourself that you're useless. And you're really not It's not your fault. MS. Fatigue is draining. It's really difficult to manage, and it will take some it will take time and help to kind of find out what was going to work for you. Yeah, definitely get your MS team involved. Look for referrals to fatigue management classes, as we've mentioned. There are medication options, even if they're not, not great. They're not there's no magic bullet here. But worth trying, perhaps worth trying. And I think being open with your loved ones tend to tell the people around you not just that you are feeling fatigued, but the impact that has on you and the impact that's having on your mental health. Yeah. And on all the things that you'd love to do, but you could just really do with some help with.
Helena:
We had a chap who's done a lot of things for us volunteering, called Will, and he has made some videos and podcasts. And I love the way that he sort of visualise that as your brain is kind of like overwork traffic system. And when the fatigue occurs, because you've got the myelination in certain parts, the brain is clever enough to reroute it. But that will take a long time for the traffic to get through these areas. And that's sort of how I look at it sometimes. Yeah, and get there in the end, but it will take me longer. Yeah, and that's okay, because my brain is really working hard now.
Claire:
Yeah, absolutely. So from MS. UK, what are your thoughts on Modafinil and amantadine? We talked about those early one. We don't. As far as I know, I don't think people with MS are still being prescribed Modafinil. Although there will be some people who are on existing prescriptions and are still getting and arestill using those. And that was a European safety review. I think the suggested it wasn't really worth the side effects, Modafinil, but, you know, if you're still taking it and you're finding use from it, you know, there's no reason to stop taking it. And then amantadine the evidence suggests that only two and five of people who take it find benefit is not going to wipe out all your fatigue, it might improve matters. But yeah, it's one of those… there really ought to be more to do and I do wonder sometimes now with the weather, you know, long COVID is shining a bit of a light on these kinds of these kinds of things. additions where fatigue is such a big part, whether we might get some more, more research into things that might deal might deal with fatigue that will benefit the MS community which will be amazing I think.
Helena:
I certainly know that on our Facebook group, which I mean, we are a UK charity where to get some people from other countries and they do talk about other drugs that they have, like in America, or I'm from Sweden. So I know that there are some other things that people use in Sweden, which tends to be sort of more of what's gonna say, up is almost like this kind of, but that's not being offered at all in the UK.
Claire:
No, no, it's not. I know, it feels really, it feels like people in the UK are a little hard done by you know, you can drink the dark chocolate, hot chocolate, which you know, has a for some people find that, you know, dark chocolate you proper cacao hot chocolate can be useful. But whether that's, you know, that's an inside start to blur the line, isn't it between dietary supplement and nutritional things? So I think there's a lot of tinkering around the edges. But there's not really been in the UK at least a real medication response to this. When you think of the fact that fatigue is the most common reason why people with MS might leave the workplace, they might end up retiring sooner they want to, or change jobs or go part time. Because it has huge economic impact on manage fatigue in the UK, I think it's a real shape.
Helena:
I personally, I've always quite shocked that it's not so much into it, because it feels like you know, if you're from the pharma industry, and you're watching this why are you not doing research into this?
Claire:
You know, hundreds of 1000s of people affected by fatigue, not just with MS. But people with fatigue. People with fibromyalgia people with long COVID. It's a, you know, a shared symptom. And it would be really great to see more research into these treatments. I'd have to look up what the exact side effects for Modafinil were, as I say, my understanding, I was just checking just beforehand, I think it was a European safety review into Modafinil. And they, and they and the UK judges that it wasn't the cost benefit analysis was not in its favour. I can look that up when I popped the link and pop the links into the bottom of the field when it goes up on YouTube. Yeah, okay. Yeah.
Helena:
Because not everybody is obviously watching this live, we will pop it up onto YouTube later on. So you can access it from there. So you're not missing out on anything. Or if you're watching it now, and you're feeling really fatigued, so you're not really paying attention. You can rewatch it.
Claire:
Yeah. I think it's interesting that some of the, you're talking about pharma companies, I think some of them are noticing that if you can show that your disease modifying drugs, for example, has an impact on fatigue. That's a real marketing class, isn't it? And I knew not naming any names, but partly because I can't remember. But I know one of them is thinking that the impact on fatigue, yeah, is definitely something to worth talking about. Because people will really want that people really want to solve this problem.
Helena:
Oh, it would be such a big impact on the on the MS community if there actually was a medical thing that would work for more people.
Claire:
Yeah, I mean, I think back to an interview that we did with Alice Nicole's a long time ago, now I asked about what a cure for MS would look like. And he pointed out that there are no autoimmune conditions that have been cured, in that people no longer can, you know, they were diagnosed with a condition, and now they're not, no matter what, they're still people that have MS. They have just got to get the symptoms very much under control. To the extent they don't impact them anymore. And I think fatigue is one of those things, isn't it? If you could get rid of fatigue entirely the down… you're being diagnosed with MS would be less, much less significant. But yeah. Be wonderful. So yeah, that is definitely it's not just about lesions and relapses and progression. It's, you know, fatigue is one of the things that you live with every single day sometimes. And so yeah, there's a huge, huge impact there.
Helena:
I want to say a big thank you to everyone who's commented and sent questions and things just because we're going to stop this very soon. Now, it doesn't mean that we can't answer your questions. Yeah, give us a call. And Claire, why don't you tell how people can get that book if they want it?
Claire:
So absolutely. On the MS Trust website, we've got a publications shop. So you go to the shop, MS trust.org.uk. And you will find all of our publications, and you can download them for free and they'll… you put in your email address, and under delivered to email, or you can order a paper copy. And again, it will be sent to you absolutely free. And, you know, this is part of what you know, a big part of what the MS trust is here for is getting this information into your hands. So we've got, obviously we've got information, webpages on fatigue, as well. And we've mentioned some of these interviews with people. We've had a web webinars and all sorts of interviews and expert, you know, expert consultation that you can make use of as well. So, yeah, please do. Please do go and make yourself a favour. I think fatigue book is one of our absolutely most popular ones. You know, we have to reprint it every couple of years. So that's, that's good. I hope I'm just really glad it's been useful to people.
Helena:
I will say big thank you, Claire, for coming and joining us today.
Claire:
Huge pleasure! I will come back again.
Helena:
And we are hoping to do these more regularly, so if there are any more topics you would like us to talk about. So fatigue was obviously a big one and we know there are certainly a lot of other topics, please suggest them to us and we’ll be back online in a month or so maybe.
Helena
Oh, we're back. That was great. I really enjoyed chatting to Claire. And obviously we've had Claire on the podcast before but having it live, it was a completely different experience to do. And, you know, it was great to see comments pop up and people watching live. And obviously, we had a lot of great questions already sent in in advance as well. So I really hope you found that useful. And don't forget to check all the show notes, which are included underneath this episode, and on our website as well. Because it includes lots of links about fatigue and all the things we spoke about during the interview.
Nick
Yeah, huge thank you to Helena and Claire because we know recording live is definitely a lot harder than doing what we're doing now. If we make a mistake, it's not the end of the world. But you're both amazing. And thank you to everyone who sent in questions, watched live or raised a question live as well. If you do have any further questions about MS. That could be about fatigue or anything else from symptoms to treatments. We are here for you at the MS Trust. Our Enquiry service and helpline is available from Monday to Friday apart from UK bank holidays. And you can reach us from 9am to 5pm. Outside of these hours, you can leave us a message and we will get back to you as soon as we can. So if you do need us, call our inquiry service and helpline on 08000323839 or you can email us at ask at MS trust.org.uk.
Helena
And you can also find us on Facebook, YouTube, Twitter and Instagram. And also Tik Tok now go and give us a follow on Tiktok we're very new on that platform. But we're just starting to put out more content on there. And obviously on Twitch now as well. And we're hoping to do a few more of these streams and things on there. So we're we're also gonna see if we can have some gaming events and things happening. So go and look us up on Twitch to have a look at what other events are going on there. You can always get in touch with us via social media or via the email that Nick has already given. And you know, like and subscribe spread the word. We love to hear what you think of the podcast and what you thought of this live session. Wanted to say another big thank you to Claire for being such a great subject expert on fatigue. And finally like always, we want to say big thank you to John Chapman audio for the music to this podcast.
