How common are breathing difficulties in Multiple Sclerosis?

Multiple sclerosis can affect breathing in advanced MS. But breathing problems can begin at any stage with MS. To explain more in this podcast we talk to Racheal Moses who is a Consultant Respiratory Physiotherapist and Neuro Physiotherapist Jody Barber. They explain how you can spot breathing problems early, what you can do if you have breathing difficulties and what you can do to try to prevent them occurring in the future.

 Show Notes

Breathing problems - info from the MS Trust:  mstrust.org.uk/a-z/breathing-problems
Breathing exercises - info from MS Trust: /mstrust.org.uk/information-support/exercise-ms/build-your-own-exercise-routine/breathing-exercises 

Five top tips for improving your lung health – blog from Jodi Barber - -mstrust.org.uk/news/expert/five-top-tips-improving-your-lung-health

Speech and language therapy – info from MS Trust - mstrust.org.uk/a-z/speech-and-language-therapy
Mindfulness and MS – article Jody mentions - mstrust.org.uk/news/views-and-comments/mindfulness-and-ms

Transcript

Nick

Hello I’m Nick

Helena  

And I am Helena. And we both work at the MS trust the charity for people affected by MS. In the UK. We are here to help you make sense of MS.

Nick  

Yeah, thank you so much for listening to our podcast. So this is multiple sclerosis, breaking it down. And today we're actually going to be tackling breathing issues and MS.

Helena 

Yes, and this might seem like a bit of a scary subject to talk about. And it's something that's mostly associated with quite advanced MS. But we thought it was important to talk about it, it's often not talked about, unless it's like a big problem that occurs. But there are some things that you can do, like here, and now to try and prevent it from happening in the future. So we thought, you know, why not actually talk about it? And sort of raise some awareness about it?

Nick  

Yeah, and I think when we, when we first sort of put it out to the MS community, Helena, everyone, we're sort of talking about breathing problems for our social media, are shocked by like, so many people got in contact saying, oh, you know,  that happens to me, too, that I never knew this could be part of MS. So it's clearly something that people experience. And maybe it's not talked about enough. So we're going to be talking about all the different aspects of it. So not just exclusively things that are found in advanced or progressive MS. But also things that might evolve earlier on in the MS journey, or things that as well breathing issues that might result because of an infection.

Helena 

And I guess we should say here early on that if you would happen to have a sudden onset of breathing difficulties or shortness of breath, you should go and see a doctor or go to A & E. Because not everything is MS. And it can be a sort of a serious thing. So there is breathing problems there are associated with MS. And there are acute things and they should be taken seriously.

Nick  

Yeah, absolutely. I mean, it's really can be a really, really scary topic. If you're ever in doubt, you know, it's so important, isn't it to go and get yourself checked out. And we've got a couple of experts who are going to be joining us shortly. So we've got Rachel Moses, who is a consultant, respiratory physiotherapist. And we're very excited because she's just become one of our MS trust ambassadors. So it's very exciting, we're really happy to welcome Rachel onboard, she's going to be such a great asset to the team. She's got so much experience, and she's just really easy to talk to and listen to and gets her points across really well. So we're really excited to have her on board. So Rachel will be not only talking about the subject, but also answering lots of your questions that you sent in, as I said, we were really sort of blown away by how many people were experiencing breathing difficulties. could be linked to MS. And when we put the call out there, so many people got in touch. So we've taken as many questions as we could and, and put some of them to the experts. So I'm looking forward to hearing that.

Helena  

Yeah, I was also really shocked because I think, you know, we thought how many people will put in up some questions because we've put up other topics where we thought, we're good. Let's get lots of questions, but it's not been as many and we weren't expecting quite this onslaught of questions. But that makes it really interesting. Joining Rachel is friend of the podcast, neuro physio, Jodie Barber. She's been here before talking about mobility tools and things like that. And she's helped us out a lot over the years with content for our website as well and spoken at conferences and she's a proper MS trust friend as well. And both of them both Jody and Rachel are super passionate to talk about breathing issues. And MS. So I think like Nick said, we've met them at conferences and they were both so sort of just you could see that they really wanted to talk more about this topic. So I was really excited to have them on the podcast.

Nick  

Yeah, definitely. You've got the real sort of MS trust team today for this. They're very fantastic. I'm really looking forward to hearing the whole interview. So I think we can probably jump in now. So this is going to be Helena, Rachel Moses and Jodi Barber. Enjoy.

Helena 

I'm here today with Rachel Moses who is a consultant respiratory physiotherapist and has been on the podcast before who is a highly specialist neurological physiotherapist. And earlier in the year, we caught up with Rachel and Jody at the MS trust conference where they just stepped down from the scene talking about breathing problems in MS in front of a bunch of MS. Health professionals. And we started chatting about the how often this is actually a forgotten about symptom, though, you know, we don't hear much about this. And we sort of said, these are often just discussed as a part of really advanced MS. So we started talking maybe we should do a podcast, and there was that a resounding yes in the room. So I'm so pleased to have you both here today. At the probably start, could you just briefly tell us who you are and what it is you do? Just very short so people know which one is which

Rachel

Hi everyone. So my name is Rachel. So I'm a physiotherapist like Jody and I specialise in respiratory health. So I look after people with a variety of long term conditions, which result in their breathing be more difficult. And yes, I work in a regional team. I love it. And I also work in a leadership role at NHS England

Jody

Hi, I'm Jody Barber, I'm also a physiotherapist as Rachel said, and I've had a special interest in helping people with MS live well with their condition for over 30 years. And worked in the NHS for years. And that work in a specialist charity, helping people with MS. And more recently, other progressive neurological conditions. And I yeah, I've had a had a long passion of raising awareness on this topic. So thank you so much for inviting me.

Helena  

Very excited to talk to you both. I just want to say before we start, then we were planning on having a speech and language therapist in this podcast as well that they sadly couldn't make it. So we haven't given up on the idea because we know how important they are, especially when it comes to breathing issues. So we're going to catch up with them a bit later in the year for another special podcast about that. But , shall we start then? So I'm going to just throw it out, because what is breathing problems in in MS? And how can they manifest.. Rachel, what you say?

Rachel

So many of you listening to the podcast will know that MS is primarily a disorder of the central nervous system. So the nerves become affected, which in turn affect the muscles. And people with MS can develop especially over time muscle weakness. Now, that can include the muscles of breathing like any other muscle. But breathing is such a subconscious activity. So you're all breathing now, then you don't really have to think about it too much. But when the muscles of breathing become affected, so this can be because of weakness or dysfunction, or sometimes the nerve signals don't work in the right way. And we can start to develop symptoms. And sometimes these symptoms can come on when we're doing more activities that require more effort, such as if we're running to catch the bus, or if we're climbing stairs, but sometimes as well, the you know, breathing become more difficult just sitting watching the television. So in terms of how do we kind of define respiratory or breathing problems and people with MS it can actually present and manifest in many different ways. Sometimes it can be a progressive, something that comes out over time, sometimes it can be very acute. And you might notice things like chest infections, or at certain times of the day you become more breathless or doing activities. And sometimes it can be dysfunction, which we'll talk a little bit about. So getting dysfunctional breathing patterns or feeling you can't catch your breath. It doesn't happen for everyone. But we know people in the more advanced stages of MS. It can be a real anxiety, it can be a real struggle for people because being breathless at rest, you know.. So that's something we have one of the reasons why we're so happy to talk about it today.

Helena  

And how common is it? I mean, you mentioned advanced MS. But could this also be something that could even be an early sign of illness?

Jody

I wouldn't call … It's not necessarily an early reported sign of MS in my experience, but as Ive said I have long had had a passion of increasing our awareness or understanding not only as a healthcare professionals, but also people living with MS is because often you're admitted to hospital with a urinary tract infection. It's the most common reason to be admitted to hospital or to need additional help or to feel really poorly. But the second most common reason is change of tractions what will be called respiratory illness. And that can lead you to either become very, very poorly. And that can have an impact on your ability to carry out your everyday activities, these antibiotics being prescribed, or it could lead to a hospital admission. And that can take a long time for you to get over that. So, yeah, second after urinary tract infections, but we seem to have a lot more awareness about managing our bladder a few years ago than we did about what I'm breathing, because what my experience as a clinician, I would find that that person would find out, they'd been admitted to hospital, for example. And they were like, but I didn't know anything wrong with my... So a silent symptom. Yeah, that, you know, and then when you deep dive into that person, you go, well, kind of it was there as a silent kind of the first sort of, you know, sort of quiet kind of chesty cough. Yeah. That then sits on someone's chest, and then that that kind of manifests, isn't it as an infection. So yeah, so it's common, but it's often that silent kind of hidden symptom that people might not be aware that it's a problem. Whereas with your bladder, you may be aware that you're making trips to the toilet that, you know, things aren't quite right there. With the breathing, it's a little bit kind of hidden away until you get a nasty cold that then you don't get better from in the normal way

Helena 

So is there any way we can sort of measure it or almost check it ourselves? So if you say it's like a silent kind of thing, so we can work it out whether there is maybe something going on there?

Rachel

So essentially the answer to that is yes. There are ways that we can monitor lung function and lung health. But generally speaking, that tends to happen if someone has a known respiratory problem. You might have heard of things like COPD, which is an obstructive inflammatory disease of the airways, other conditions. So as professionals, if we're worried about someone's respiratory health, and like Jodie says, if it's something that's been creeping up on someone for a long time, but actually they have a hospital admission, and some start asking questions. For example, Are you short of breath at rest? Is your cough weak? How many times have you needed antibiotics for your chest in the last 12 months? And other questions..someone may put the pieces together. So there's techniques that we can use as healthcare professionals. So that may be blowing into a tube that measures your lung function, it's called a peak flow metre, that can measure the amount of air you have in one breath. And it can also measure your cough strength. But there's also more sophisticated tests, you can have done either at the GP surgery or in a lung function Laboratory, which are non invasive. So they're, they're simple to do, but do require, like a maximal effort. So we can monitor. But there is things that you can do to just really be more aware of your own, like lung capacity. So we've already mentioned things like, you know, speaking. So we're speaking today in full sentences, some people might have to take a breath, every couple of words, if your cough strength gets reduced, which can often be a sign people don't put together with breathing. So as you're constantly trying to clear your chest off, someone says  ‘can you just do a big cough because they can hear something rattling on your chest’ where you just can't seem to get breath to make that big cough, that's another sign that there are other signs such as being able to blow your nose and sneezing. And I know that keeps coming up, you know, why can't I clear my chest or clear my nose? So those are the little signs. And if anyone's sat wondering at home, just simple things like can you count to 10 without taking a breath? How long can you hold your breath for? And sometimes people just keep a little diary of certain things that make them feel breathless, because we would associate certain things like I mentioned, running to the bus or climbing the stairs as but actually, if you're finding certain activities of daily living, putting your clothes on, tying your shoelaces, people can really struggle with because it.. big muscle of breathing and sleep quality, fatigue, these all play a massive part in your lung health. So that was probably a really long answer to what you might have thought was a simple question.

Helena  

Well, it's not a simple issue. So it's probably fair enough to say that but I guess it's just all these little bits to look after then. And are there any other signs that we should look after?

Jody  

Yeah. It's quite interesting as a physiotherapist you specialise in in your area. And as we know Rachel's a respiratory consultant, specialist physiotherapist, and I've specialised in neurology, but Rachel said to me at conference, oh you have to be a generalist in in all of these areas with MS because it can affect anywhere. And so what often happened was the neuro physiotherapist when it wasn't something we were actively questioning, you know, the people with MS about early on enough. And so we did do quite a few years ago, three centres had a deeper dive into just questioning and asking some questions about people with MS are coming in. And what we discovered was, and what we don't want we didn't know is when exactly is there a point when we would expect respiratory health people to be more vulnerable and stuff? And we still don't absolutely know the answer. We've got some really useful facts and information that we can use to kind of really think well, this is the time to be really thinking about our respiratory health a bit more because a lot to juggle when you're living with MS. And like what, you know, what, what do I concentrate on, it can be a bit overwhelming. So what we noticed was that what I suspected was the point at which someone had to start using two things to hold to support themselves, then when you hold on to something you immediately have to link a lot of your muscles here. And so then it can be hard to take a deep breath. And we wondered, was that the time or is it when you're having to use a wheelchair a lot more. So what we did find out was, and this is supported by certain studies, that when your upper limb function, your arm function starts to deteriorate, and you get weaker in your arms. And that can just be a finger function, it doesn't have to be whole arm movement that's associated with a decline in how hard you could and fast you can blow out. Also, we found a close link to putting a weight around the middle of your body, and also low back pain. And that makes you know, because …squashing on your lungs. And also, if you're in pain, then you're less likely to take a deep breath. Yep. So it's just so in answer, the other thing is, you might want to be asking your healthcare professional or taking maybe a bit more of a look, as Rachel said, taking a bit of a note of: are things changing, particularly if you've noticed, some things are changing in your hands. If you have got low back pain, and you've put on a bit more weight, that's also going to make things a little bit harder, as well. And they're all not definitive. It's just things to look out for. Because everyone's so individual in what's going on. And it's not kind of or ABC, if you know what I mean, in terms of this will happen. And that will happen necessarily. And again, it's a really long answer like Rachel's. So in terms of Yeah, measuring it, I encourage people to just understand what the peak of flow is, like, because it's easy to measure when they're healthy.  And then, you know, ideally, we're, we're recommending as neurological therapists that we just checked that at the annual review as a general health test, like you'd have your blood pressure checks and things so that you know what you're like when you're kind of healthy and you're good. And then its earlier to detect if there's, there's a change that starts to happen to someone through the course of their life with MS. It might stay the same all the way through their life. But it's helpful to know when there's a change, there's definitely if you're become more sedentary, and your arms get weaker, back pain, and putting on a bit more weight around the middle.

Helena  

It's interesting what you're saying about peak flow metre, because I have two asthmatic sons and they get those, you know, and I've never, I've never had to go at one. So that was using one that they had ordered from Amazon. And it's quite interesting to sort of see where you're at. And then I've been caught running and the seeing of whether it improved it and it's yeah, it's doing is there any sort of measurement that we know that is average with this or because I'm just thinking if somebody gets one blows into it, and then sort of say, well, what does that number tell me?

Rachel

So I think that's a really great question, first of all, Helena and so the peak flow metres that are that asthmatics, as you mentioned, have at home they measure and then more forceful asset over one breath which measures the level of obstruction so you have what someone would have a normal. So when say your son is normal in theory, and that's fit as they are, he will have that normal value, if he's starting to exacerbate that number will drop. And if it drops by a certain percentage, that's when he might need certain medications in his asthma plan. So with a neuromuscular disease, it's very different to that with the condition that affects that obstruction of the lungs with muscle weakness, which people with MS have, obviously forgetting about any other respiratory conditions they might have. It's very different. So what Jody's mentioned, is a specific technique using that peak flow metre, that helps to monitor over time, which is slightly different. So we wouldn't really advocate people going out and buying these themselves, it would be something that because it's about technique, it's about your type of interface you have. So if you blow into a tube, if you have a mask, and as Jodie mentioned, we actually adapt the use of these peak flow metres for what they're designed to use, which is in asthma monitoring, to measure cough strength, which is actually probably more of a concern when the respiratory muscles get weak, because that's when you get the chest infections over actually, the volume someone breathes. Because we know people over time can adapt to really low lung volumes and actually be okay. They're not affected by it. So yeah, great question. But that's why we don't advocate for people who just go out and buy these things and maybe see, you know, like a professional.

Helena 

Well that makes make sense, because that kind of shows that all respiratory issues are not are not treated equally. So if you're having issues with something that you may think is related to your MS and its respiratory, what, who should you contact? Who should you talk to?

Rachel

Well, again, another great question. So as Jody mentioned, MS. Professionals, you know, as a respiratory clinician, I have so much respect, because MS specialists or specialist MMS neurological condition, but actually, that includes all the other systems that someone has. So we always say, contact your MS professional. So for some people that may be your doctor or consultant, it may be the nurse, it may be the physio, the occupational therapist, whoever you have that relationship with. And as Jodi mentioned, who might perform your annual review. And, as they will help to be able to differentiate between what is something that's related more to your MS conditions. So for example, those people who have relapsing remitting or those people who are maybe more in more advanced stages of MS a more progressive MS. And they'll be really help you to give you tips and techniques to help maintain activity, which is a really important part of respiratory health, but also some of the red flags that we might have. And I'll talk about the red flags, which will trigger a respiratory referral. But I also want to make the point that people with MS can also have respiratory conditions, as I mentioned before, so if you have ever been a smoker, and you're getting a bit older, even if you give up 10 years ago, 15 years ago, there's checks that you should have and to might measure if you have COPD, chronic obstructive pulmonary disease. And because that can manifest in later life, if you do smoke, we really do advise you try and get help to stop. Obesity is a really important factor in respiratory health, because it not just affects your breathing through the day, but also at nighttime. But as you become less active, it becomes harder to maybe control your weight for some people. But also there's other conditions that develop over time. And what a respiratory team will do is just give you that kind of lung health check. Now some of the red flags. So if you were coming to Jody or myself and you'd be saying things like you know, I just can't get my breath, I just can't take a deep breath. I really try that I just can't get that air in. I can't lie flat anymore. So that's a real red flag for us because it means that the big loss celebrating the diaphragm really struggles when the stomach contents like Jody says are pushed up.. and I can't cough on my coughs really weak. I sit some times and I get short of breath just sitting and I don't know why. Sometimes it's chest infection. So I have had to go to the GP three times already this year to get antibiotics and my chest and if you have a combination of all of them, that can really be a sign to us that actually need a specialist respiratory review. Now I say this like it's really easy to get a respiratory appointment because sometimes it can be really challenging, but if you if someone puts on a referral to respiratory things, all of those things combined with a diagnosis of MS. Really, that should trigger a specialist respiratory referral. And normally that's to a respiratory consultant. First of all, you will try OSH. And they might refer you on to a physiotherapist, they may refer you on to a speech and language therapist, they may refer you on to a number of people to have some certain tests done that can really help to either diagnosis a respiratory condition or exclude, which is just as important saying actually your lungs are okay. And it's not always about getting a chest X ray, because nine times out of 10 unless you've got something going in or going on within the lungs themselves. We know normally this is because of the muscles that support the lungs.

Helena  

That makes sense but I guess also if you're having acute problems, you should be going to A&E, right?

Rachel

Absolutely. If you have if you experience sudden onset shortness of breath. Yes, definitely. You know, if you're looking at someone, your loved one, and they're looking a bit blue around the edges, or they really can't talk then absolutely, that's an ambulance call.

Helena  

Are there preventative things like exercises that people with MS. can do themselves. I know during COVID times when we will talk about singing and all sorts of exciting things. Is that still the same?

Jody

Well, yeah, there's loads and Rachel's fed. So generally, if you're living with MS or any long term neurological condition, we're always interested in our overall health, our brain health and our kind of physical, what we call a muscle, what they call a muscular skeletal healthy muscles in the bones. So general exercise, where you get out of breath is very beneficial not only for your breathing muscles, for your lungs, but also for building a bit of what we call neuro protection, and helping keep our brains healthy helping and making sure the volume of a brain stays big. So hopefully, if you've, you're given this, this kind of advice at the point of diagnosis, you're already engaged in something with regular exercise, but that's not always easy, because we're human beings, we have other things that distract us. And also with MS. You can have relapses and symptoms that come along that make exercising hard. So having doing a form of exercise that makes you feel out of breath regularly. So the kind of national guidelines depend on how vigorous you're exercising, so I would say half an hour of something moderate walking every day or three times a week where you get seriously out of breath. And do something that you enjoy so that could be dancing that could be running that could be boxing, there's a lady who happens she loves boxing, we you know, there's quite a lot of evidence around high intensity exercises, you know, anything moving around, that just gets you out of breath. But sometimes there are times when you can find getting out of breath is really difficult because you become weaker, you've got pain or whatever. So always getting you know, seeing people to have that kind of pain managed and all of those things will enable you to exercise and then yes, we talked about singing, singing can be a really lovely way to really exercise that big muscle for breathing your diaphragm. So I really recommend joining an online singing group it doesn't have to be a choir there are  lots of singing groups or a face to face singing groups, you don't have to be entering to do any sort of performing or you could just sing along to your favourite songs at home. I love doing that. and seeing at the top of your lungs your heart that and when we have the respiratory podcast and we have talked about the importance of keeping the muscles around the throat and that strong as well singing can help with that. And so yeah, general exercise singing but do something that you enjoy and I don't want to tip on kind of speech and language because it's a speech and language service that taught me about you know playing humming with a kazoo can be really good for exercising the muscles around particularly around your throat for talking, coughing and things like that. And so you know, kazoo playing can be helpful playing a you know, wind instrument if you do already. All of that, keep it up. It's really, really helpful but little bit more kind of niche to that area and might help a little bit more. Or you might notice this is where I'm coming out of my area of expertise, which were quite dysfunctional breathing and things like that. But you might notice that there's a problem. So you're playing the flute and you can't play anymore. I don't know, you might notice there's something there. And so general exercises, there are specific breathing exercises that you can do to really give your lungs a good stretch. And this is something that Rachel taught us. And when we asked her for some help about educating us as neurophysiology, do reminding us really stacking your breath. And then, which is where you're taking a breath in three, three stages to really give those lungs a full, full stretch. And then there are supportive things that can be used if you find that hard. So to help give you an extra deep breath, so there are a bags that can give an extra big breath. Now that can be they can be a sensible initiative by your respiratory physio, but a lot of neuro physio is also a trained in use of the adjuncts that can help with taking a deep breath when you when you're finding that a little bit harder. But that should be done at your annual review, or you've contacted and it's just navigate, it's different in different areas, who you will navigate to. But that's for your kind of your specialist healthcare professional to navigate with you what's the best thing, however, it doesn't mean that the other things aren't going to be helpful. So if you're still finding it hard so I've got people here at the centre where I work, who you have very quiet voices, you come to the singing group here, because there's a lot of other benefits from exercise, and then also have support as well. So it's just not one thing fits all that fits all.

Helena  

Because we often talk about like brain health and how good it is to learn a new skill. So if you, for instance, decided to learn to play the flute, I mean, you're doing two in one there and you know in a new skill and you're doing breathing exercises, and why not start doing a bit of karaoke, maybe they know that there are even apps where you can go and just sing a new kind of do online karaoke. So you don't have to be at that. Let's just say smoky bar. Hopefully, bars are not smoky anymore. But yeah, I mean, it sounds like there's a lot of stuff, that could be fun as well. So you wouldn't actually feel like oh, my I'm doing exercises, though.

Jody

I think that the kind of raw message here is it can be really hard to exercise. If you're living with a long term condition like ms, it can be very soul destroying, because you're not living in the body that you hoped you would have. And it might be failing you at different times. Or theres that unpredictability that it might be good one day and not another day. And I think it's knowing what you can do on those not so good moments, or periods are not so good, good kind of days. And knowing that even like a little bit of singing, if you can't do your normal run to kind of just really exercise things. You know, do something that you do enjoy because you're more likely to attend to that exercise. Keep it up if you enjoy it. So yeah. I quite like exercise. But there are things I don't enjoy. I don't enjoy racquet sports. So I wouldn't I don't you know, I don't do those. 

Helena 

It gives me a good excuse when I'm singing along in the car or when I'm cooking. And my kids are complaining about my singing to say, well, Mommy is actually exercising now. So let me be.

Jody

Yeah. And yeah, it's because how often do you if you don't ever think do you project your voice? Unless you're shouting type of person? I don't know.

Helena  

When we were talking, we're told the community that we're doing this podcast, we had loads of questions. So would it be alright, if I asked a few of those ones that we have sent in to us? This first one actually sort of almost came about when we were doing the podcast about sleep problems? And somebody said, waking up in the middle of the night out of breath. Could this be a sign of MS breathing difficulties?

Rachel

Yeah, so broken sleep can be caused by a number of different things. And we know that insomnia can be a real challenge for people with MS. But what we're talking about here this question is being woken up in the middle of the night when you're presumably in a deep sleep and feeling panicked because you're short of breath. So as with.. the people who have a condition that affects their muscles and muscle weakness, and sometimes the big muscle of breathing the diaphragm can become affected.. in the diaphragm is a huge muscle and it's very resilient. And people can function really well with really small percentages of the diaphragm function. But during sleep if you've had the fortune to sleep with anyone or share a bed. And you'll notice that as people go into the kind of deeper stages of sleep, their breathing rate slows down and their breaths gets bigger. But when the muscles are weak, especially the muscles of breathing, and the body just can't do that anymore. So what you find is when you go into that deep, deep sleep, your brain is a very clever thing. And it will recognise that your breathing is becoming insufficient at night, and it will therefore wake you up because of certain without going into too much detail with certain things that happen, but different chemicals. And people who wake up in the middle of the night experiencing this breathlessness, it can be a sign that the muscles are breathing or becoming weaker, and they may be disproportionately weakened than say your body muscles like Jody mentioned. So yes, do you get it checked out. What does it mean? Well, it can, again, a respiratory team will put the pieces together. So for example, if you have maybe another condition, or if you have a carrying a bit more weight around your tummy, you might have a condition called obstructive sleep apnea which people can get when they don't have any other conditions, and partake in this very simple checklist you can do for example, the signs of someone's neck that age your weight, and particularly as your partner notices your snoring I you know, you've been married a long time your spouse may sleep in a different bed because of your snoring. So there's all these different signs. But yes, in short, yes, it should be something you get checked out. Sometimes people adapt. So they might have previously slept with one pillow than our sleeping with two or three. Again, that can mean different things. But also, it's not just about respiratory, there can be cardiac signs of that as well. So it's definitely worth mentioning. And that's something you can go to GP about, obviously speak to your MS team. But that's something that if you're having those types of symptoms, you know, when you maybe can't get an MS review quicker, call your GP. And just say these are some of the things that I'm experiencing. And it may be that they refer you on to someone based on some of the things that have gone on a simple blood test might show different things. So it may be something that you know, it may be something you don't need to worry about at all, there may be something that actually needs a bit more attention. Because there's other things going on. So yes. You know, things like nightmares, people who have all of a sudden have vivid dreams that you never had before walk waking up in the morning with a headache. These can all be the signs, what professionals start asking you all these questions and you're like, oh, yeah, that as well now have that as well. So it's starting to piece it together. So the

Helena  

Next question was a really checks the sounds like a smoker rattles and wheezing. Could this be linked to MS. There was blocked nasal passages? On the right hand side. Could this be linked to MS? And there was a lot of people talking about chest infections and ongoing chest infections that weren't going away. So that clearly was a bit of a theme here.

Rachel

So again, this can be related to overall lung health. And it may it can be related to your ability to take that deep breath. So if you imagine you're only ever breathing from the top part of your lungs, you've got all the bottom that in the back bits that aren't getting any airflow through and then lungs are a breeding ground for infection. So you have lots of mucus in your chest, you have lots of saliva. If everything's becoming a little bit dis coordinated, if you notice, maybe you're you drink certain fluids and you're maybe coughing a little bit, there may be a little bit of swallow dysfunction there. You know, all of these different things can lead to maybe not so much an increase in mucus or sputum, but it can mean more than inability to manage it. That means clearing the bottom part of your lungs. And sometimes it's the saliva that we normally have in our mouth and obviously in our nose we sneeze, the and to get rid of we blow our noses, especially, you know at certain times of the year. So if we have a cold, you know if you have..so there's all these different factors that can come into play. If you're feeling like you have us people are telling you have crackles who that's normally just saliva that's sitting around your vocal cords which sit right up here at the top of your.. with what we call your airway that in the back of your throat and that sometimes you just don't have the strength to clear. So there is certain techniques that your physiotherapist your speech and language therapist can teach you to help give you a bit more puff. Jody mentioned the air stalking, but also things like really good oral health so after you know taking time with your food, maybe trying different consistencies of food, and the speech and language therapists will talk about certain foods that would trigger more saliva or more or more and mucus like cough. And then there's other things you can do if you do see that you're very congested. If you live in an area with a very high pollen count or very high congestion, you know, a lot of exhaust fumes, just doing simple things like nasal wrenches. So you can get little contraptions off the internet, you can get little tea pots, that you just basically rinse your nasal passages that can help get rid of any of that congestion, which people can find really helpful. But this kind of phlegm sitting on the chest, if you can feel it here, if mucus sat in your lungs, that you may just have trouble coughing and clearing, if it's more you can hear it is kind of the throat and that's when your good kind of oral health or hygiene comes in. And being maybe more mindful of the consistencies of food. But really, this is when we're kind of getting into the speech and language therapy threshold to make sure that there's you know, the swallow in the protective mechanisms are good. And then there's certain techniques they can teach you. So you know, make sure you sitting upright as you can, when you're eating and drinking, making sure that you know you try it, you're more mindful of when you're coughing, if there's certain things that are triggering that costs, particularly the eating, and, and yeah, speaking to your MS professional

Helena  

Many people mentioned shortness of breath, not just when exercising, but just at random times. And some people are asked if this was linked to the MS hug. But when you were talking about pain, I do remember when I had the MS hug, it was really hard to take a proper breath. That's probably how I noticed the MS hug in the first place. Because I stood up at the stairs and tried it. And it just felt like someone something was stabbing me. And that people find this really, really stressful and sort of they get filled with anxiety. Is this linked to MS?

Jody 

As I said everyone's symptoms and how they're expressed how they manage are very individual. So I don't want to give a kind of blanket this. Yeah. And so and your personal experience of you, you're very kindly shared, Helena explains. Yes, you found it harder to kind of maybe take a fill of breath with that MS. Hug. MS hug is, is something that is really anxiety provoking. It's one of those really hard invisible tips for people to describe. And I'll be honest, is as a healthcare professional, I don't really know what to mean people describe it. And it's very all consuming when you have it. And it's really hard for me to understand what that feels like. But but you know, it's very, you know, it's very round here, we've got all our all our organs that we want to protect and things. So I would imagine it's it, there's quite a lot of nerve endings. I know there's quite a lot of nerve endings there. So it will feel really quite bizarre and quite, quite horrible. So naturally, taking a deeper breath is going to be harder. So the question was shortness of breath, not really excising at random times, it could be linked to the MS hug. And I would say that the random times. Yeah, but again, as Rachel's echoed, I'll echo what Rachel said throughout this, talk to your MS healthcare professional that knows you well, to work through any of the red flags. Is there anything else going on? We do know that, you know, our breathing is very closely linked to our emotional responses, you know, when we're having an argument, we go high and squeaky and stuff like that. So you're linked with, you know, sensory changes, dysfunction, that's very anxiety provoking all of that. So it's not to estimate it is to have that kind of a very measured objective overview, one by one, what's going on here, and working through what we can do you can do to manage it. So it could be, is my answer. There are things that if it's linked more with the anxiety and that because there is very, very little people say that actually takes away that that kind of MS hug, kind of that kind of thing. And some people have said that, you know, mindfulness something they find relaxing, might not be mindfulness. You know, can be helpful and yes, it could be linked to but you don't want to assume so if you are worried go and see a health care professional who knows you so your nurse your AHP, someone who knows you and your MS. Just to try and work through what's going on with you right now. To work out, do we need to navigate you? Is it..because we always say don't blame everything on MS. But we want to just make sure how is that MS manifesting its symptoms and how we're managing every day before you go firing off to other healthcare professionals. So it's a hard one to answer but a good question to ask.

Helena  

There was a few people asking about medications, and there was a few different medications popping up, is there any of the sort of typical MS medications could be dmts, or pain medications that we know of that can cause issues with breathing? 

Rachel

I mean, I'm not an MS expert. So you know that the side effects of any medication will be explained there, we always get questions about certain analgesics or certain drugs for neuropathic pain, see gabapentin, because all you all you have to do is put in Google and there might be some links to things like respiratory depression. But you know, in terms of what we're aware of, especially with people who are on multiple medications, there's none that would have a direct side effects of breathlessness. It's more the interactions they have on each other. So whenever your MS team in your MS consultant will absolutely know the interactions of different drugs. So it's more if someone's wanting to start you on a drug that maybe doesn't know so much about your MS medications. It's definitely right to check. And, you know, if you are given a medication, for whatever reason, and you're feeling new symptoms, then it's important to let someone know even if it's your GP because these things we report and we collect and we learn on.. I mean, they all are the things that I think are really important to maintain, like lung health that maybe we haven't touched on, and that are maybe more important than medications. So things like vaccinations, we talk about the influenza vaccination, there's the pneumococcal vaccination that people can have. Jody's talked about exercise and activity being really good for lung health, and I've mentioned smoking cessation or tobacco addiction, and that includes vapes. Now, vapes are very dangerous. So you know, and but where we're aware, some people use them as a stepping stool. Yeah, nutrition. So new and nutrition, there's a really strong link to nutrition and chest infections and respiratory health, as well as some of the other medications that might help you if you have lots of saliva, or you have really thick secretions. There are there are drugs called mucolytics, which can help break down the viscosity of the thickness of the phlegm that can be started in addition to your MS. medications that will help your respiratory health so there is other medications or vaccinations that can help with your breathing. And we haven't mentioned reflux management, which a lot of people if you find you get acid reflux, so you get a lot of heartburn. That can be a side effect of some medications, but actually that can and again, speech and language therapists will talk more about this but that can cause a high incidence of chest infections or saliva, or this crackly kind of feeling people get.

So reflux management is really important. 

Jody:

Yeah, if you're on a medication that's helping for example, with your that you have found a medication that  helps with the MS hug and it's successful. Don't dramatically stop anything. Because you're worried that it you know, do seek advice from the specialists that knows you as a specialist that prescribe that medication? Because I find when you get that that right blend of your medical management for neuropathic medication. You don't want to mess with that. So don't if you notice breathing problems don't necessarily add up the dots in the wrong direction. Yeah, do you speak to someone because it could be completely unrelated. And sometimes people do kind of join up the wrong dots. So it is very individualised. I might read something on the internet that says all you know, the link with you know suppressing breathing and neuro suppressing drugs. So don't you know, just you know, and it could be that that pain is helping management is helping you breathe well. 

Helena  

Yeah, just stay away from Dr. Google. Yeah. And this was the final question here, which I think popped up in the sleep podcast as well. Is there a best position to sleep or lay down for optimal breathing when living with MS.

Rachel

The best position is the most comfortable position number one. Yeah. Like I said, it can be if you experience different types of pain, we know that certain postures if you have back pain for example, lying on your side with your knees bent with pillows in between can help. If you feel a little bit breathless, or you feel like you get more phlegm, when you're laying flat, just a you know, couple of pillows  or sitting at sleeping a bit more upright. But in terms of the best position for your lung health is there's not really a best position. It's the position of comfort. But like I said, if you do experience breathlessness, and you have got a little bit of respiratory muscle weakness, definitely sleeping a bit propped up, yeah, tends to be more comfortable. If you maybe struggle to get in certain positions, just a little pillow on your side, and you're in a kind of a slight, you know, left hand or right side line helps as well. Jody, I don't know, if you've got anything to add into that.

Jody

I only from my respiratory, you know that most of your lung tissues at the back of your body, so you're gonna get the best breath exchange there. So I would say exactly a position that's comfortable. And, you know, be creative with, with how you might find that comfortable position properly with pillows, sometimes, it's quite nice to have a session with.. I'd say there is one, one key thing that I would add, actually that I have learned. So particularly if you are struggling to get comfortable, and you are have, you're finding it more difficult for your torso, your limbs have got weaker, there are quite a lot of postural support cushions or systems that you can, you can use and I must admit that, surprisingly, they are designed to kind of hug your body there are some that are made with really good responsive memory foam, the Valcro, there's various different companies that do this now. So if you're very, if you are more wheelchair dependent, your limbs are a lot weaker, that has made a significant difference to how well someone can take deep breaths. So do ask your healthcare professional to have a really good look at how you're lying in bed and ask about postural support systems. That's a whole another podcast we could do to support this. So in addition to pillows, it's there are there are specialist postural support systems. So special pillows that will stay in place that require a specialist assessment and your neuro physio can help navigate you to how to go about that

Rachel:

Can I just mention one thing on position and as well, Helena, and one of the things that people ask us when they experience more breathlessness is, you know, is there sex in there? You know, how can they adopt positions of comfort during sex. And when we talk about sex, we don't just talk about sex, we talk about intimacy, because there's lots of different things that people can do. And the you know, the MS trust have some amazing resources on this. So please check it out. But from a respiratory perspective, if we were advising people or giving people tips of how they can optimise their breathing during sex side lying is something that people can find really helpful if you are able to stand and I think Jody mentioned this before, you know fixing with your upper limbs. So maybe using if you have a desk or something like that in your bedroom or your house and other positions of contact as well you know if so if the person with MS if your partner doesn't have breathing conditions, maybe having more positions where they're on top can really help their breathlessness just be mindful of the diaphragm that sits just above the tummy area. And you don't want to be compressing any of that. And also little things like propping your head up in the bed or using pillows underneath your, your part of your legs. So underneath your bottom between your knees, that can really help as well with just positions of breathing convention. So I just wanted to mention that but do look at the resources on the MS website as well. And a final recommendation is that, Jodi mentioned the singing groups before they're all open to anyone. So if you're struggling to maybe find anything in your locality or with your MS service might provide check out them because there's some online groups as well and they can have some great resources as well. You don't have to have COPD you can go on so another great charity as well. Thank you.

Helena  

That’s brilliant. We will put all these links in the in the show notes so people can find a way and I'm hoping that everyone that's listening will go out and join a choir or something?

Jody

Would it be helpful to put some links into some of the postural support system? I think there might be other healthcare professionals or someone can go and ask the healthcare professional. And they are, they should be funded by your local health authority I've managed to get funding for all of them. So they are expensive bits of kit, but they're worth looking at. 

Helena

Send me all the links, and I will put it in for the podcast and people can go out and see what they were thinking it to help them. But I just want to say thank you so much. This has been so interesting, everything so much that I never knew that there was so much to talk about when it comes to breathing. But for me, I think the takeaway seems to be that, you know, you should take this serious and preventative versus just, you know, start early before there is a problem 

Jody

Definitely, thank you

Rachel

Thank you so much. Thank you.

Helena 

Now, if this was a commercial podcast, here's where there would be an advert. But as you know, we're charities, we don't do that. So instead, we'd like to take this opportunity to tell you all about our fantastic resources for people with MS.

Nick  

So where are you going to find those resources, the best place is on our website. So that's MStrust.org.uk. And there you can find lots and lots of information, resources for anyone who's affected by MS. So if you head to our website, and you can type into the search bar breathing, you'll find links to lots of things that we've been discussing today. And also some breathing exercises as well. A blog actually written by Jody, who you've heard on our podcast today, where she has five top tips for improving your lung health. And that's the that's the title of the blog as well. So please do go and have a look. And if you want any other information about MS. Please do head to our website and and make sure you you have a good look around. It's it is jam packed on there, Helena, isn't it?

Helena 

Oh, yeah. There was something about everything. Well, that was, again, an awful lot of information. And I have to say, Nick, this is actually a subject that I didn't know much about at all, I think like you said in the start, it can be quite scary to talk about. I certainly knew, like during Covid times when everybody was talking a lot about, you know, problems with breathing and things like that. It used to really terrify me knowing that, you know, oh, maybe there is an issue for people with MS. So it actually helps to sort of normalise it to talk about it that I think and to sort of find out that there are some things we can try and do to prevent it as well. Because like they both said that it tends to be the case that people end up in hospital before they actually realised that there was an issue to start with. And that can be a bit scary, can't it?

Nick  

Yeah. I mean, it's good to know that there's some information out there, and some advice. And I guess that would be something to take away as if you're not sure just you know, make sure you do go and see a health professional because it's a type of thing, isn't it that you don't want to leave, you know, to by the wayside, you know, if you're concerned, make sure you do go and see someone.

Helena  

Yeah. And I think you know, the things they were saying about noticing sort of a difference, like if you're tying your shoelaces, you're suddenly realising that you're getting a bit out of breath. And it's not just associated with sort of physical exertion, like, oh, you know, running for the bus or doing something, but actually just, if you're just sitting still, and you suddenly realise that you can’t take a deep breath. And I did mention in the podcast as well about having things like MS hug or any kind of pain that can also stop you from taking a deep breath. So there's, there's so many different little things that can affect it. So I think, you know, to actually, if there is any part of this that kind of rings a bell or makes you think I will get in touch with the MS nurse and sort of say, Well, is there something we can do because like it said, talked about this, things that it can be referred to so you could measure these things. And just sort of see whether there is an issue and what can be done about it. But if you don't have any issues at all, then I think this is when we should really think about prevention. And sometimes it's really hard to get your head around thinking of these things because I mean, it's a little bit like disease modifying drugs, isn't it like, if I have a headache, I can take paracetamol or ibuprofen or whatever preferred pills, I like to try and get rid of my pain. But me taking a disease modifying drug is not going to like change me in that you know from one state to another but it's hopefully prevent me having relapses in the future. So sort of doing things like these breathing exercises that they were talking about joining a singing group, I mean, you know, it's fun stuff, isn't it? So it's not just necessarily like, oh, you need to go and sign up for a running thing or doing this exercise, it's actually stuff that can be quite fun. And it can be done at home, you could sit and do breathing exercises, as you as you work, I suppose, or watch TV. So there's, it's just important to try and remind yourself to do those things. And not just think how to deal with that when that problems occurs. Because if this in this case, it's actually better to start. Start early.

Nick 

Yes, same with anything, isn't it? Helena. It's like, you know, why should you eat a healthy diet? Why should you try and exercise? Why should you.. and it comes down to the it's, it's that prevention, isn't it? That you're talking about that? You know, the more that we can set ourselves up for our health, the better, you know, and singing wise, I'm not sure my partner says.. I really can't sing. I should tell her that I'm you know, it's really important that a lot for are quite like singing. Yeah, you know, and so when she's hearing my, my tone deaf note, I'll say but it's really important for my health, that I sing at home.

Helena  

Yeah, I there's a Swedish saying, which is really quite tricky to translate, but it sort of goes a little bit like I sing with passion rather than with skill. as well. It's doesn't always sound great, but I'm enjoying it. But you know, I think maybe we could have a I don't know she restarted, kazoo club in the office. Maybe on the days we work from home might be better. But I do like the idea of like, joining a singing group for maybe not great singers, but actually just meeting and singing together rather than, you know, oh, I have to be so good. So I go and join a choir. And I think Jody was saying that they have these things at some of the therapy centres. So why not? Like, check out what they are like, you know, if you enjoy singing, but you've always been told that you're not a great singer, it shouldn't really stop you, even if you know, partners and children. Just have to do by yourself or with like minded singers

Nick  

Yeah, and it says the social side of things as well, that you're saying, Hello, is something quite nice. Isn't there about coming together with other people? And if it's something that you know, is going to benefit your health as well? Is that also that kind of like communal well being element of that as well. So yeah, it's really nice. 

Helena  

I agree. I think so. I would love to hear if people have done anything like this, if they joined any groups, or if they've, you know, I don't know, please drop us a comment or send us a message because I'd love to hear more about it. 

Nick 

I think it's probably worth mentioning as well, at this stage that breathing issues and MS. You know, we're about to kind of come into autumn time as we're recording this. So we're heading towards, you know, the times of potentially influenza, this person talks about Covid. Again, as well as lots of the germs that spring up this time of year, particularly with children going back to school. So I think it's good to know, just kind of have a think about chest infections, that can be a cause and a result as well with breathing problems. chest infections, as we know can have serious impact on your quality of life. So a bit of advice is to is to minimise the chest infections where you can is to practice that sort of general infection control. So making sure you know, you wash your hands, anti-bac, and see back if you can vaccinations for influenza, and Covid. And just be alert of those sort of early signs of sickness or a cough, I'm pretty horrible. I always do this where I think I'll just, you know, Soldier On instead of taking that time off, when you know you can do just to make sure that you're recovering, tell your GP straightaway, you know, if you've listened to this, and you think this clearly links to MS and breathing problems, got a chest infection, you know, get to your GP when you can. And you could also tell them that, you know, also you could have that reduced lung function. And that you've you know, you've had that information from the MS trust and from Jody and Rachel.

Helena  

Yeah, as we say on the website, you know, people with MS are entitled to get the flu vaccine. So, in case your GP surgery hasn't got that on their notes, maybe to remind them off it, I know that I've fallen off a few times. And I had to go and sort of say No, I know I am under 65, but I am entitled to it. And generally, it's just administration  errors, but it could, if you haven't had the call, or if you haven't had a note about it and you think you should be, then definitely get in touch with them. Another thing we'll be talking about avoiding chest infection, and I think this is something I tell my kids daily is to like, really make sure you chew your food properly and like sit up straight when you when you eat, because there is such a thing, like a type of pneumonia that can occur if food particles gets into the lungs. So yeah, to make sure that you actually chew your food and sit up straight. So all those kind of advice that your mum was telling you. Yeah, probably worth thinking about. But as we mentioned, at the start, as well, you know, any kind of sudden onset of breathing difficulties or shortness of breath, you should still go and see, see a doctor or go to the a&e. Because, you know, some of these things should be taken serious.

Nick  

Yeah, it's so important, isn't it? Helena. And yeah, make sure you do go and see someone if you are in that position. But yeah, so I like that where you're saying there about sitting up straight, eating chewing properly, your food, sit up straight, because my mom was always saying that sits up straight. So that was the main message at my house. And again, it's just that thing, isn't it? I'm terrible for that, as well, sometimes when I'm not concentrating properly, sit on the sofa, I'm probably watching the TV. You know, you say it's to making sure you're concentrating on all of those things can be really beneficial.

Helena  

I think you know, talking with food in your mouth is obviously one of the other things I say to my kids, and, and they probably always thinking, why shouldn't you be doing that? But I guess now I can tell them that you don't want to get pneumonia, do you? 

Nick  

Exactly. Yeah. So I think we just wanted to say before we end our podcast, we, if you enjoyed it, and you're not familiar with what we do at the MS trust, we're here for everyone affected by MS. From the very first moment of diagnosis onwards. We're basically here to help you make sense of MS.

Helena  

Yeah. And we're a charity. And we actually received no funding from the government or the NHS. So this is just hold you to the generosity of people like yourself that might be listening and supporting us. So that's the only way we can sort of continue our mission. So if you'd like to donate towards the work that we do here at the MS Trust, the link is MS.trust.org.uk. Forward slash donate. And it's very appreciated. So we can keep on keep on talking about important issues.

Nick  

Definitely. And what then the other thing that we do is we have a helpline. So if you have any questions about MS, or anything else that you've heard about in our podcast, you can go ahead and give us a call. The number is 08000323839. And the team is available between Monday to Friday 9am to 5pm. Outside of these times, you can leave us a message as well. And we'll get back to you as soon as we can. Otherwise, you can also drop us an email for the helpline team says Ask@MS trust.org.uk. That number again, just in case is 08000323839.

Helena  

And you can also talk to us on social media. We have a very vibrant Facebook group where the people who operate the inquiry line do drop in and answer questions as well. And so if you just search for multiple sclerosis trust, you'll find both the group and also a page on Facebook. We're also on YouTube, Twitter and Instagram and also on threads and on tik tok now I believe that the list is getting longer and longer. And I suppose Twitter is x now isn't it so probably need to remember this. And you can find this podcast on Spotify, Google and Apple podcast and Amazon music and probably a bunch of other places where your favourite podcasts pop up. So get in touch and like and subscribe, please. And now I think I'm off to sing to my children whether they like it or not. So shall I see you for kazoo club next week

Nick 

Definitely thank you so much