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- [00:05]
A
Hello there and welcome to Breaking It Down, a podcast from the Ms. Trust. I'm Nick and we're joined by our host, Helena. Hi, Helena, how are you today?
- [00:15]
B
I'm good, Nick, how are you?
- [00:17]
A
Yeah, not too bad, thank you.
- [00:21]
B
Myself and Nick, we both work for the Ms. Trust, which is a charity for people affected by Ms. In the uk, and we're here to help you make some sense of Ms.
- [00:31]
A
Absolutely, Helena. That's right. And today on our podcast, we are going to be looking at spasticity and spasms. So we know that they're really common for people in the Ms. Community and the intensity of them can vary really greatly from person to person. So later on we will hear from our expert, Wendy Hendry. Wendy is a specialist physiotherapist with over 35 years of experience, experience in managing Ms. And spasticity specifically. But before we get there, let's talk a little bit about spasticity and spasms. So research suggests that at least two thirds of people with Ms. Will experience some degree of spasticity at some point. It's an important symptom to know about, even if you only have mild symptoms at the moment. It's worth learning more about because early interventions can really benefit you in the long term.
- [01:28]
B
And I'll be honest with you, Nick, I've heard about spasticity since I was first diagnosed with ms, and though I understand the word spasm and I have some idea of what that is, but I've often struggled to understand spasticity over the years and I think I'm not alone in this. In fact, when we were looking at the information that we had for the website for this, one of my colleagues was showing me this study that actually suggested that the experience with spasticity varies amongst its individuals with multiple sclerosis and spasticity, as they might not recognize it as spasticity or have the language to describe their symptoms and this can lead to potential delays in diagnosis and treatment. So I think I'm not alone in actually sort of struggling a little bit with the word spasticity and what. What it actually means.
- [02:20]
A
Definitely, Helena. It's complex, isn't it? You know, spasticity and spasms are not always straightforward and they're not the easiest thing to explain. So what we did is we asked our social media community to describe their experiences of spasticity and spasms. So in doing so, we wanted to try and, you know, bring some of these symptoms to life while also thinking about how much they vary from person to person. So instead of us trying to explain it. We're going to hear from some people from the community and the first person is former guest Adam.
- [02:55]
C
What does spasticity feel like? For me, it's various. It's just a bit tight or it can be really like your body's turning to stone and it, it feels really, it's really sore. It's sore because your, your muscles are so tight and they're so tight for however long it lasts.
- [03:17]
B
Good to hear from Adam again. The other input that we got was from mostly from our Facebook community. So we pulled together a lot of these comments that they've been saying and I thought we would sort of go into it a little, a little bit more. And we often hear that people with Ms. Describes spasticity as stiffness, heaviness or tightness in the muscles. And your responses very much echoed this, but it added an extra level of insights that makes this so much real to understand. Although more commons talked about spasticity in legs, one also mentioned that affected other parts of their body, the tightness that's known as increased muscle tone. And this might get confusing and a bit technical. We're going to talk about this more with our expert in the interview, so stick around for that one. But this was described by one person as just a bit tone tight. Or it could be like your body's turning to stone and it feels really sore. It's sore because your muscles are so tight and they are so tight for however long it lasts. Someone else picked it up on this kind of feeling like stone parallel while introducing a feeling of heaviness. My legs feel so heavy, like they're filled with cement. Most of the time the muscles feel like rocks. And another one like I like this description. Metal rods in my legs that are heavy and not flexible.
- [04:48]
A
Thank you for sharing those, Helena. And we also did receive lots of comments about spasms, from mild regular muscle spasms to more challenging symptoms. So here are a few examples that were shared with us. I suffer daily with spasms. I'll be sitting in my recliner chair and all of a sudden my leg just starts to move, kick out and become painful. Then both legs will start and my arms will also start. It gets so bad I start to panic, I can't walk and usually ask to be taken out of my recliner and straight back to my wheelchair. We often hear people describe their spasms as suddenly sort of these jerky movements, with one person also described it as my muscles are trying to break my bones with intermittent jerks. And someone else said I get really bad restless legs and my legs jerk involuntarily. I have to keep jiggling my foot to stop the jerking from happening. Some spasms cause your body to contort with. Some people commented saying that they get that sort of random jumping and twisting. Someone was talking about that random jumping and twisting in the lower leg and never knowing when it might happen and you might kick someone.
- [06:11]
B
We've heard people talk about kicking partners in the bed when they're asleep and they wake up with sort of the spasms. There was more people that talked about the sort of suddenness of spasms and this was a good example of the. The bed one. I said they're laying in bed cuddling up with my boyfriend and then I suddenly have a full body spasm for no reason and boyfriend has led learned that I get them when I'm tired, not out of spoons tired. This is going back to the spoon theory. We can put a link to that on, on the, in the. In the show notes, but just when you've had a really long day, but it's still annoying when laying together and suddenly you have a spasm attack, it jolts you both. And some found their spasms affected both arms and hands. I experience leg and arm spasm mostly at night when I'm in bed, when my hand and foot will literally clench up so tight and it's so so. And other people describe this clenching as claw hands, while another said my hand locks and my fingers stick in strength positions which are uncomfortable but not that painful. And other times it affects the arm and hand. And then after the initial pain of the muscles going into spasms, it takes a few days for the dead arm pain to go away. And if you want to read more about what you had to say about this, we've made all these comments into a blog that you can see in the show notes.
- [07:41]
A
That's right, Helena and I think it's now time that we go and learn more about spasticity and spasms with our expert, Wendy Hendry.
- [07:50]
B
I am here now with one of our Ms. Trust ambassadors. I'm going to hand over to Wendy and let her introduce herself. Maybe you could tell us a little bit about your background in the world of Ms. As well.
- [08:03]
C
Hi. Well, my name is Wendy Hendry. I've been an Ms. Specialist physiotherapist for a very long time, almost 40 years, probably over 40 years now. And I have worked in a variety of different settings in the nhs. I've worked for Ms. Charities and Ms. Therapy centers I've worked on rehabilitation units for people with Ms. I've also did a master's and a doctorate doing some research into standing frames in these standing frames in people with Ms. I've sat on the NICE guidelines committee in 2014 and I've been very honoured to be a member of the Therapists in Ms. Group always since its inception, and have been involved with the Ms. Trust for a very long time and again have recently become an Ms. Ambassador, which is a huge honor. So, yes, it's been my world for many, many years and I loved every second of it.
- [09:09]
B
And we're so excited about you joining us as well. So today we're going to talk a bit about spasticity and spasms. And I think the first question that I would like to ask, really, because some people who will listen to this podcast wouldn't know. There will be some people, obviously, who've been living with it for many years, but then there might be people who are just curious because they've heard about this being symptoms of Ms. So how does people with Ms. Describe, or how would you describe muscle stiffness and spasms?
- [09:41]
C
Well, muscle stiffness and spasms can often happen together and they can often happen as individual symptoms of ms, and they're very common in Ms. And a lot of people, when they first start to experience these, will describe it as a sort of stiffness in their muscle, a sort of heaviness in a part of their body or perhaps throughout their body. So there are lots of different ways of that. People use it to describe it. Some people can say it's like walking through treacle, very hard work to walk. Or it can also feel as if people are almost walking robotically because they've lost that sort of fluid movement that we tend to take for granted. But the thing is, it can often sort of come and go, especially spasms, and different things can bring it on or make it worse. And sometimes it can almost feel as if it's gone away. And it can be a very gradual onset, so people often don't realize that it's actually beginning to happen. But I think, as I say, it's that kind of sort of stiffness, inability to sort of move the limbs or the body in the way that you normally do. That sort of loss of fluid movement that people describe.
- [11:02]
B
Yeah, that's a really good description of it. I like the treacle. It's not. It's not pleasant, is it? Now, for listeners who never experienced any of these things, what, apart from walking through treacle, what should people look out for when it comes to spasticity or. Or spasms.
- [11:24]
C
Well, as I say, these are sort of two different things, really, although they can occur together. And if we just think about spasms, spasms by the very name can just come on very, very suddenly. Very jerky movement can take you completely by surprise when you're perhaps trying to do something like move from A to B, from your bed to your chair or onto the loo, or get out of the car or even roll over in bed. And you can suddenly get these very sort of jerky, jerky spasms, as if your muscles are just doing things under their own control rather than your control. So that sort of sudden jumping, especially of the legs, can be a first sign that somebody is actually experiencing spasms or maybe sort of clenching of fingers or when things happen in your body that you're not expecting and it's just a very sudden thing, but it can also be very subtle and slow. And so you just feel that sort of slight stiffness or reluctance for the body to sort of move in the way it should do. And that, again, might be the first sign that those muscles are getting a little bit stiff. So it can be very difficult. And often, like so many symptoms, it's only in hindsight that you think, oh, gosh, that actually happened quite a while ago. But now this is. I'm beginning to realize that there's something going wrong here. Yeah, I think it's.
- [12:56]
B
It's. It's an interesting one because I remember talking to a neurologist on. On the podcast before. We talked about cold sensitivity. And I said, oh, my leg always feels really stiff when I go outside. And I had never put it down to being anything to do with, you know, spasticity or spasms, because I just thought. Thought it was, you know, me behaving a bit strangely.
- [13:17]
C
I think by their nature, they can often be very transient, come and go, and different things can. Can make them worse, and some things can actually make it better. So sometimes you. It does go away and you think, oh, well, what was that? So, yeah, it can. It can be difficult sometimes to pinpoint what the problem actually is. Yeah.
- [13:40]
B
Where can you experience stiffness and spasms? What muscles are sort of commonly affected?
- [13:46]
C
Well, you can actually experience them anywhere in your body, just dependent on which nerve has been damaged and where. In your central nervous system, which means your brain and your spinal cord, the damage has actually happened. So it can happen anywhere in the body, but commonly we tend to see it in mostly in the legs and maybe the trunk and To a lesser degree in the, in the upper limbs and head. So any, any muscle can be affected. But what tends to happen is that this stiffness or even the spasms happen in what we call patterns of movement. So certain muscles get affected. So in the leg, it's often the muscles which keep the leg straight and upright when you're walking. So it could be the muscles at the front of the thigh, we call those the quadriceps muscles. They can feel very stiff, and if they're stiff, then it's difficult to bend the knee. And then the foot itself can actually point down a little bit and you can find it very difficult to pull the foot up your toes, up towards you. And often, as I say, these things happen in patterns because every movement we make as human beings happens in a normal pattern of movement. And so the body tends to sort of. The spasticity tends to follow these patterns. But conversely, it may be the muscles affecting the other side of the leg, the bending muscles, the flexing muscles that are affected. So the leg can stiffen in that sort of bent position as well. So it tends to have happen in patterns, these specific muscles are affected. But again, it just depends really which part of your nervous system has been affected as to how it actually manifests in your body.
- [15:44]
B
That makes sense. So how long can episodes of stiffness and spasms last? Will they go away? I mean, you've already touched on this a little bit.
- [15:55]
C
Once some damage has occurred in that central nervous system. If we go back to basics a little bit, I mean, if you think about your body and your muscles of your body, they have what we call tone in them. So the muscles are always sort of working a little bit. And we know that they're always working a little bit because even if they. You're lying in bed at night and I come running in shouting fire, you jump up pretty quickly. So the muscles are sort of almost prepped and ready. There's always that little bit of tone. And when I say tone in this respect, I don't mean a sort of well toned gym body, I just mean that the muscles are sort of ready to go, if you like. And there is a volume switch in the nervous system so that when you really want the muscles to work, the volume gets turned up and the muscles, the tone in the muscle increases. And so when you stand up and you want to stay standing, you don't want to fall onto the ground, then obviously the muscles at the front of your thigh, the one that keeps your knee braced back, those muscles have to work quite hard, so the tone is turned up in them. If it wasn't, your knees would collapse and you'd fall on the floor. But the minute you want to sit down in a chair, your nervous system has to turn that tone down so that you can then bend your knees and sit down. So when the nervous system is functioning normally, that tone is very variable and it depends on lots of things. It can depend on how you feel, it can depend on if you, you know, if I put a plank of wood on the ground and ask you to walk along it, you could probably do that fairly well. If I put that same plank of wood over a thousand foot drop and ask you to walk across the plank, you would, your gait and your muscles would be moving in a very different way because you would be frightened. So tone changes for all sorts of reasons. But once the nerves have been damaged to those, to those muscles, once those sort of reflexes, that's sort of what they are really are not working normally, then that sort of volume switch can stay either turned up or turned down when you don't want it to. So the leg stays stiff or the arm stays stiff. Even though you want the knee to bend, you want the foot to sort of pull up towards you so you lose that sort of lovely sort of fluid control that would normally happen. And it's, as I say, that sort of volume switch just sort of gets stuck on. And because there are so many things which influence the volume of that tone, if you like, then of course it can feel as if it's coming and going and changing, although in some cases it may be raised all the time. Again, that just depends on where the damage is in the nervous system and how severe that damage is. But once the damage has occurred, then the spasticity will always be there, if you like, the tone will always struggle a little bit to normalize itself, but different things can help to reduce it and you can learn ways of doing that.
- [19:28]
B
It's incredibly complicated, really. I mean, not just this, but like our nervous system to start with. It's, it's amazing that we function, really, it's wonderful.
- [19:37]
C
We should be in awe of it.
- [19:39]
B
Absolutely.
- [19:40]
C
And of course it does it without us even thinking about it. So it's completely automatic. And of course, when tone starts to increase and limbs and bodies are difficult to move, then of course you do have to think about it. And that can contribute to fatigue as well, because you're having to consciously make an effort to think about how you move, which normally we wouldn't have to do.
- [20:08]
B
Yeah, Yeah, I think what you're describing there with the plank across, you know, I don't know. Crocodiles coming up. I mean, there's definitely a complete different kettle of fish, but if you're still just walking on the same plank.
- [20:22]
C
Yeah, absolutely. And I think it's important to understand how just normal tone changes in a body, and then you can begin to understand why you can get these changes when that circuitry starts to go a little bit wrong.
- [20:37]
B
Sometimes we hear the word spasticity triggers.
- [20:42]
C
What are these common trigger factors? Probably one of the commonest is pain. And pain is one of those interesting things because, you know, we think of pain as, you know, cutting yourself or twisting your ankle. But of course, pain can come in lots of forms, and it may not just be pain. It may be something like a sensation, maybe even clothing, which is a little bit tight. So increasing the sensation may well elicit a little bit more tone or a little bit more. A few more spasms. It could be pain from a pressure area. It could be pain from an ingrowing toenail. It could be arthritic pain. It could be pain that you don't even know you're experiencing, especially if you've lost sensation. And you may be sitting in one position for a long time and maybe you're sitting slightly on one buttock more than the other and just causing a little bit of pressure pain there. You may not even feel it, but your body, as a result of that, may start spasming a little bit more. So pain is a common thing that can actually make spasms much worse. Sometimes even, excuse me, lying in bed in one position, perhaps on your hip, and you may be starting to sort of build up a bit of pressure there, and you may be asleep and not even realize it until you start to sort of spasm. So pain is a. Is a. Is a common trigger. Things like bladder and bowel problems, especially constipation, can be a real trigger for spasms and spasticity or even bladder dysfunction or even feeling an urgent need to go to the loo. That in itself might be something that actually sort of to tries, trigger triggers, spasms off, even things like temperature changes. If you suddenly go out in the cold, you may find that the spasms will burn because, of course, we all know that if we go out into cold weather, we start to sort of clench our muscles a little bit more. You're trying to conserve heat, but that might be enough to sort of trigger the spasms. We also know that if a body starts to warm up a little Bit and only by half a degree centigrade, the messages along our nerves will start to slow down. So you may find actually if you get a bit warmer that the spasms and spasticity actually reduce a little bit just because the nervous system has sort of calmed down a little bit. Things like menstruation, if people are coming up to their period, it may well mean because obviously your temperature changes, the temperature changes in the middle of the month when you ovulate. And sometimes it can be as subtle as that and you think, oh gosh, why is it that at certain times, certain weeks, everything starts to go horribly wrong? And it's not until you start putting two and two together, things like infection or illness, sometimes feeling more spasms or more spasticity or even the spasms and spasticity relaxing a little bit can be a sign that you're going down with a urinary tract infection or getting a cold. So infection can also make a difference because obviously that is also going to affect your temperature. Things like anxiety and you know, we spoke about walking across a plank over a crocodile infested pond or a thousand foot drop. You know, anxiety will make it much worse. And sometimes it can be for people with very severe Ms. Maybe who are having carers come into their home and maybe there's a carer that's new to them and they a little bit concerned about what this care is going to be like on that morning, their spasticity might be much, much worse. So all of these things can sort of feed in things that we're worried about in our family. Putting more effort into something if we're trying really hard to do something is a common trigger for increasing tone in our muscles. The speed at which we move, the faster we move often can trigger a spasm or can make spasticity worse. The posture, the way we sit, the position of our head, and we'll perhaps talk about that a little bit later, all of these things can actually make spasms and spasticity worse. So the thing really is to be aware of these triggers, to be aware of all the different things that can make things better and can make things worse. And I think the best way to actually get a handle on this and the way that I use with my patients is I ask them to fill in a spasticity spasm diary. So if somebody has spasticity or they think they are beginning to develop it and they feel that it's very variable and it may be interfering with different aspects of their life and activities of daily living, I Just give them a very simple sheet with, you know, Monday to Friday and morning, afternoon and night, evening and nighttime. And I get them to put on there when the spasms are worse and the sort of things that they were doing just beforehand, or it may be perhaps when they open their bowels that week and if they are taking medication for spasticity, to also put on that diary when they're taking the medication, how much medication they're taking, so that we can begin to build up a picture with them of exactly all of these different factors which are going to influence their spasticity. And often that alone sounds so simple, but it can be the key to really managing tone and spasms well. So there's a lot that we can do which will sort of help. And as I say, starting at the very beginning, if you like, is the best place to start when it comes to how to manage this condition.
- [27:14]
B
I like it. It's almost like you investigating yourself a little bit there.
- [27:18]
C
Absolutely. Because everybody is different, everyone is an individual. And until you get to know. And it's putting two and two together, it's sort of saying, well, what was it? And often we don't, we don't always realize. And in fact, I think analogy I really like is, you know, often we see symptoms and we see problems sort of downstream, if you like, yet we forget to look upstream at what may have caused the problem. And all too often, I think in medicine we sort of deal with what we see, which is the downstream problem, without necessarily going upstream and sort of seeing what caused that in the first place and what can we do about that. So it's sort of going back to those first principles, which can be so helpful.
- [28:05]
B
That's really, really interesting. So you mentioned treatments, which is where I'm going to move on to next. We know spasticity and spasms are managed with a mix of self management, physical strategies and education where appropriate. But we're mostly going to be talking about the sort of physiotherapy input today. There will, there will be loads of information on the amistrust website about the more sort of medicine part of it as well. But I think that would be a whole different podcast in its own.
- [28:39]
C
It would, it would. Can I just say sort of one thing really is that I think if, if people do start to develop spasticity and spasms or if they've already got them, I think one thing which is really important is that these things don't have to be treated, you know, because it's so important to Realize that sometimes a bit of extra tone can be so helpful. It can help you walk, it can help you transfer. Just having that little bit of extra muscle activity can be a bonus. Remember as well, that sort of spasms even themselves can help with circulation because they're moving the muscle, help to keep the muscle sort of toned and keep the muscle bulk. So it's not always something that we want to get rid of. I think that's really important and I don't think we always say that often enough.
- [29:39]
B
No, that's really interesting, actually. I don't think I have heard that before. So in some ways, I guess it's just the body's responds to that things are maybe a little bit wrong and it's reacting to it.
- [29:53]
C
Yeah, absolutely.
- [29:55]
B
So let's talk about how a physiotherapist can support in the management of stiffness and spasms. Can you walk through some of the strategies that you might use if you go and see a physio?
- [30:09]
C
Well, I'm obviously very biased because I think that physios are incredibly well placed to help people manage spasticity because of course it's all about movement and muscles and that's our job of work, really. But as I said earlier, that we would start very much at the beginning. So we would start by taking a really full history and get people to take part in filling out diaries, because that's so important to get a handle on it. Because it's not what we do, if you like, it's what we can help people with. It's about management. So often we think of treatment. Treatment is about something that somebody does to you, if you like, but there's no guarantee that what somebody does to you will have any sort of carryover effect whatsoever. So the most important thing that a physio needs to do is help somebody, someone to learn how to manage their condition on a sort of 247 basis. So we would first of all identify or help that person to identify whether spasticity is present. And we would do that by moving the muscles, feeling the muscles, seeing what happens when we move muscles quickly, when we stretch the muscles quickly, we're looking at whether or not there is true spasticity there. We may use tendon hammers to sort of see whether the reflexes are a little bit more exaggerated than they should be. And again, that would be an indication that there was a little bit too much tone and the muscle wasn't relaxing properly. So again, we would look at things like spasm and spasticity diaries and we would definitely look at triggers. And although I know that there's lots of information on the Ms. Trust website about medication for spasticity management, I would say very much that in my nearly 40 years of practicing, I very rarely find somebody who's on this medication who is on the right medication. So I really want to emphasize this hugely, that if you are on anti spasticity medication or you are considering going on it, onto it, then it's something which you need to learn a lot about and talk to your physio about or your Ms. Specialist nurse about, because medications for spasticity can be incredibly helpful. And in fact, a lot of what we do as a physiotherapist, that medication can either help us or hinder us. So if somebody is already on medication, they may be on too much medication. And this is a very common problem in my experience. And this is often because maybe the patient hasn't been, the person hasn't been reviewed very regularly or the GP is reviewing the person. Often GPs are not terribly clued up about this medication or people may be taking it at the wrong time of day. So they may be, which is why the spasticity and spasm diary is so important, because they may be getting up in the morning, struggling to get out of bed, you know, their legs are in a hugely problematic and spasming all over the place, and then they get down to breakfast and have their first medication. Whereas in fact, if that's what is coming out on the diary that somebody is keeping, just by changing the time of the medication can have a huge impact on that person's life. And also, I think from a physiotherapy point of view, if somebody is on too much of this medication, and sometimes spasticity changes over time. So, you know, sometimes you see people who've been on these medications for 10 years, 15 years, 20 years, and maybe that dose was right for them at the start, but maybe now, as things have changed in their body, they may be taking too much and therefore if you try to exercise that person, the medication will be working against you, it will be relaxing every muscle in their body. So you're trying very hard to strengthen it, but the tablets are working against you. So unless you get to grips with the tablets first, or they may not be taking enough of the medication and therefore you may need to go up a little bit. So I think the important message here is that antispasticity medication, things like Baclofen, gabapentin, Tizanidine, Dantrolene, Brugabalin all of these sort of clonazepam, which we don't use quite so often. These are really important drugs and incredibly useful drugs, but they need to be monitored very carefully and they need to be set to the right dose for that person. And that person needs to be educated on how to use that medication. And it says that in the NICE guidelines, because in the summer when it's hot, you may find that your spasticity is less anyway, you may not need as much of that medication. So this medication is not like. It's not like an antibiotic. You don't have to take it three times a day, eight hours apart. You tailor it to your needs. So it's important not to suddenly stop it or suddenly increase it. And you would tailor it very gently over time with the help of your healthcare professional. But it's a really important message, I think, because as I say, I very rarely see somebody who is on the correct dose of this medication. So it's worth considering, you know, this. And I think this should be very much part of physiotherapy interventions.
- [36:31]
B
That's really, really interesting. If you think that that might be the case for you, what's the best way to. Should you go to your Ms. Team or should you go to your.
- [36:39]
C
Yes, you should go to your Ms. Team and you may want to say, look, these drugs have been reviewed and every year you've, you know, I've just been left on the same drug and I'm not sure whether I need this drug anymore. And so what would happen in collaboration with your team? They would, very gently, over a few weeks, begin to bring that drug down and then see what happened. And you would monitor that. You would keep a diary, or it may be you'd stay on the same dose, but you'd change the timing to make sure that you were taking the dose when. Just before you actually needed it, maybe when? Before you got into bed at night or before you got up in the morning or whatever. So, yes, it's always worth asking because like so many of these drugs, people can get put on them. And in fact, I will tell you a little story here in that. I had a patient a few, a couple of years ago who was a lady with severe Ms. And she was in an electric wheelchair and she came in with her husband and she had a joystick, but she couldn't actually operate it. Her husband had to operate the joystick on her electric chair. She was sitting very badly in her chair. Her voice was very quiet. She found it very difficult holding her head up in the chair and I said, started talking to her about the medication that she was on. And she'd been on quite a high dose of antispasticity medication, Gabapentin, for 12 years and nobody had changed the dose yet. She had no spasms and she had no spasticity at that stage. So I talked to her consultant and with his agreement and with the ladies agreement, we began to reduce the gabapentin, so much so that actually we got her completely off that drug. After that, she came back to see me. She had regained use of her left arm so she could drive her wheelchair again. She was sitting upright in the chair, her voice had returned. And the thing which really, really made her so happy was that she had regained continence. So the drug had been given for all the right reasons, but unfortunately it, at its high dose, it had actually not just affected the spastic muscles, which had. Were no longer actually spastic at that stage. It had weakened every muscle in her body. But of course, when she'd lost continence, people said, oh, well, it's your ms, yeah, but actually it was the medication and I could tell you a thousand stories like that. So this is why it is so important that we get this medication right. And I'm not saying this medication isn't important, it's really important, but it has to be used properly and it has to be reviewed and it has. And I think physios are in the ideal position to do this. So I would encourage all physios to get to know about this medication because otherwise they will be giving out exercise sheets to people and the medication will be working against them and they will never strengthen that person.
- [40:15]
B
They need to sort of work side by side with each other.
- [40:17]
C
Absolutely, if you want.
- [40:20]
B
Oh, sorry.
- [40:21]
C
What I was going to talk about though was you asked me about physiotherapy, so physios would obviously identify that spasticity was present, look at how that was impacting on the person's life in a negative way. If it was, look at things like triggers, look at medication and then start to look at those sort of movements. Now it's almost impossible in a situation like a physiotherapy gym, you can ask people to move, but of course they may well be anxious and you may well see a very different picture. So hearing that person's account and people that they live with, their accounts of how that person moves and how spasticity affects them is really, really important because otherwise we just see a snapshot at that Time. But we would look at all sorts of things. We would look at their posture, because posture has such a huge impact on tone. We would look at use of maybe walking aids or their gait, we would analyze their gait. And we would also perhaps ask them how long, what percentage of the day they spent sitting. Because if they were spending a long time sitting during the day, that tells me that they're probably a bit deconditioned. And some of that weakness that they're experiencing may well be due to deconditioning rather than Ms. Itself. So we would then start to think about how to advise people to exercise and incorporate activity in their lives. And these would be very specific and tailored to that person. Now, a lot of people know humans didn't evolve to exercise. We evolved to do things, you know, go out and hunt for things and gather things and dig up things. That was our exercise. So giving people lists of exercises to do can be incredibly counterproductive because most people find it really difficult to exercise. Because often if you have a list of exercises to do, then of course you want to see change. And of course we don't always see that. But any kind of exercise is good. We know from some of the work on spasticity and say, other conditions like stroke, we know that resistance training, strength training, all of these sort of exercise, intervention, aerobic exercise, doesn't necessarily increase spasticity and can obviously make people stronger and keep them as good as they can for as long as we can. And I think exercise and activity, it's all about what works for you. So if something aggravates the spasticity, makes it worse, then maybe that's not such a good idea. So, you know, you might find cycling is great, but going on a rowing machine is terrible, whatever. So it's very much about what makes you feel better and the body feel looser. So it's individual. But the important thing, I think, when it comes to exercising is to find something that you can stick to, something that you enjoy. And it might be related to something that, a hobby of yours or something that you've, you've done. You know, gardening is exercise. Every movement we make is exercise. But of course, our biggest enemy, if you like, is sort of sitting for long periods. And because it's very difficult to know how much of muscle weakness that you see in people with Ms. Is due to the primary condition itself, the Ms. Actually making the muscles weak and how much is due to deconditioning the muscles just not being used. And I would put money on almost all of us being pretty deconditioned and we could all improve a little bit with a bit of exercise. So we would have long discussions about increasing activity, the importance of doing that, tailoring it to the person, tailoring it to their lifestyle. We might think about stretching. Stretching is a lovely thing. It helps to maintain range of movement at the joints, which is really important, especially as we all get older. Something like yoga can be fun because it's doing it with other people. Go with a buddy so that you go make it sociable and fun. So stretching can be absolutely lovely. Making sure that we're standing, doing lots of standing. Even for people who find it difficult to stand, there are these things called standing frames, which can help people to stand. There is lots of information about those on the Ms. Trust website. And occasionally we can use splinting. We have lots of different. We can use different walking aids. We can. Posture is an incredible tool when it comes to spasticity and spasms, because people often find that a change in posture will elicit a spasm or will elicit that sort of tightness. Often when we stand up and start to walk and all of a sudden we're having to keep our body balanced against gravity and all the forces out there, which is trying to sort of knock us over. And of course, just trying to stay upright can be quite a difficult thing. And what people often do is they start to lean forwards a little bit at the hip, and it's very natural, especially if people have been falling. People use rollators or walking frames. They can find they start to lean forward a little bit. And of course, as they begin to lean forward, they take the weight off their lower limbs. And when you take the weight off your lower limbs, the muscles aren't really getting all of those lovely messages from your upper body, the weight going through them, which then elicits all the proper movements and the proper balance reaction. So just making sure you've got your bottom tucked in and sort of standing up well can be fabulous. Sometimes people as well find that movements of their head can be incredibly useful. Your head movements can be like a switch when it comes to spasms and spasticity, because often it's the position of our head. Our body follows our head wherever it goes. You know, if you turn your head to the right, there's probably a good chance you're going to go that way. So you have lots of little sort of senses in your neck, if you like, that tell your body what you're going to do next so that you can make those Movements in a nanosecond, as soon as you want to, very, very quickly. So sometimes what can happen is that if you put your head into a slightly abnormal position, one that your body's not used to, it can trigger the wrong response. And for an example, so say you're trying to get out of a car, and some people find they get awful spasms where their legs. They try to get out of the car, and their legs go shooting out straight, and their body goes shooting out straight, and they can almost sort of fall backwards onto the passenger seat or onto the driver's seat as they're trying to get out of the car. Car. And what can happen is that people will sort of get their legs out of the car, and then maybe they will look up to get hold of that little handle which is just above the window. In order to help them swing round, and to get hold of that little handle, they lift their head up. And the minute they lift their head up, that signals to the body that you want to stand up. You want to go in a straight position. Because if you're crouching down on the floor and you want to stand up, the first thing you'll do is to lift your head up, and that will prime the rest of your body to stand up. So what you've done, what's happened is that you've triggered this sort of terrible straight spasm in the body because your head has gone back. So if you do that same movement, and as you try to get out of the car, you keep your head bent and perhaps even your shoulders a little bit bent, the legs will stay bent, and then you can exit the car. And the same thing can happen when you're trying to get out of bed. People roll on their side, they try to swing their legs out of bed, and maybe they reach up to get hold of the headboard in order to give themselves a little extra pull. And without knowing it, they lift their head back, and of course, their legs then go out straight. So if you have these kind of spasms that run through the body in a most annoying way, and when you least expect it, it's probably because you're moving your head and making these spasms happen. So, as a general rule, if you want to stand up, if you want your legs to go straight, lift your head up and get your shoulders back. And if you want to bend in the middle in order to sit down, bend the head and curve the shoulders round. And that will give the message to your legs to bend and sit down. So, so often you can use those sort of triggers to help move, but once you know where they're coming from, that it's actually the head and neck that's probably eliciting those responses, then you've got more control over them.
- [50:39]
B
That's amazing. I did not know that, but it makes sense when you explain it like that. Again, the body is incredible. What it does.
- [50:49]
C
It is.
- [50:53]
B
I think you already touched on some of these questions that I had, but I was wondering, because you spoke about standing frames and quite often we hear about people. Yes. You're talking about how important it is to exercise, but what about for me, that have got sort of already got quite big disabilities that they're dealing with? What can be done for someone who can't move their limbs so easily?
- [51:19]
C
Well, standing frames are ideal because a lot of people with ms, it's their lower limbs which are the problem, which the lower limbs which may restrict their walking or even mean that they have to use a wheelchair full time. But of course, the minute you sit down throughout the day, you're not using your trunk as much. You're probably not even using your arms as much because your back is always being supported by the back of the wheelchair. And what I was finding in practice was that people, once they began sitting, especially for long periods or sitting in a wheelchair, because walking was much harder for them, they would often lose a lot of their upper body strength. Now, these standing frames that we use were actually devised for people with spinal cord injury and were used in places like Stoke Mandeville in the 1970s, and they've always been used in that condition. But I started using them in people with Ms. And not so long ago, we actually did a big randomized control trial, and we found that standing actually improved people's function and improved their strength. But, of course, it has so many other benefits. You know, you're lifting your bottom off that, the chair, you're helping your digestion, you're helping your breathing. You can take a lovely deep breath. And for many people, it feels normal to stand upright. And the quality of your stand in a standing frame is really good. Really, really good. So you're supported at the hips and knees and ankles in a really upright position, which means that you can stand and watch the telly, you can do a bit of dancing, you can peel the potatoes, you can do the crossword, you can work on your computer. You know, there are lots of things you can do. So it becomes a lovely place in which to not only exercise, but also to do things. So standing is. Is lovely. And People can use these at home and they are very, very easy to use. And a physio should be able to help you to get one of these standing frames and they can be provided on the nhs, but with other people, you can use things like motor meds. Electric bikes can be very helpful and they can also help to reduce some of the tone in the legs and make the legs feel lovely and pliable and probably keep that spasticity at bay for a little while afterwards, after you've been on the motor. Motor. And again, people can have these at home or can access them perhaps at sort of Ms. Therapy centres. We sometimes use splints for bits of the body that no longer really works terribly well. We can put them into different splints to try and make sure that those joints stay in a good position. And, of course, we can use medical interventions like baclofen pumps and botulinum toxins sometimes if we want to reduce the tone in specific muscles. And of course, we also want to make sure that people are sitting in a good position. So posture becomes really important when people are sitting for long periods of time and to make sure that the pelvis is actually in a good position. Your pelvis is your key, your keystone of your whole body. If that's out of alignment slightly, everything becomes out of alignment. And then if you're sitting for long periods, you can start to get different sort of problems happening in different parts of the body, just because the pelvis isn't straight. And all you have to do if you're sitting is just put your fingers on the top of the rim of your pelvis and they should be level. And if they're not, you may need some. See a physio or an occupational therapist who can help you to realign your pelvis into a much better position. And that will. Then a lot of people find that they're sort of falling over to one side all the time and always having to lean on one arm because they're losing their balance in the chair. And they're losing the balance in the chair more often than not because the pelvis is not properly aligned. Perhaps one side of the pelvis is slightly higher than the other. Maybe the muscles are a bit stronger on that side or there's a little bit of spasticity there, pulling the trunk slightly out of position. So again, sometimes it's the simplest things in life that can make all the difference. And sometimes as well, if people are sitting for long periods and maybe they've got their feet on foot rests on a Wheelchair and their knees may be knocking together. Now, if your feet are apart but your knees are knocking together, what's happening is that you're, you're rotating. What's happening? Your legs are sort of turning inwards. And when your legs turn inwards, your buttocks begin to splay outwards. They've got to in order to allow your knees to turn in. And of course that means instead of sitting on your buttocks, which are the lovely sort of padding that we have, you're sitting more on that bone at the base of your spine, your coccyx and your sacrum. So you could get a little bit of a pressure area there, or the body could start registering that that was painful and make the spasms much, much worse. So sometimes just literally putting a rolled up towel or a folded cushion between your knees to make sure that the knees are apart and in align with your feet and your hips and that will bring the buttocks underneath you. You'll be sitting on good fleshy stuff and may stop you getting the spasms because you're not getting, or your body's not registering that sort of pain and discomfort. I mean, with the knees knocked in like that, you may even start to feel a bit of discomfort and pain in your hips just because you're pulling on one set of muscles a little bit more than the other. And again, that may well trigger spasticity and spasms or it will give you pain. And that's the last thing we need is pain. That shouldn't have happened in the first place because it was reversible. But all of these things are really important for people who are in that more severe stage.
- [57:51]
B
I guess we could all do with sitting less. Because I'm just thinking, you know, people who are full time working, you, they might think, well, you know, I'm still full time work, I'm fairly ambulatory, I'm doing things. But actually, if you spend eight hours a day sitting down in front of a computer, that is a lot of sitting. Absolutely.
- [58:10]
C
And it's meant to be the new smoking. And I mean, if you look at sort of hunter gatherer tribes, they do spend a lot of the day sitting, but they're sitting on the ground, they don't have chairs. So they are actually having to support their upper body and they're moving regularly to move into different positions and they're getting up and they're doing exercise. I mean, what we often do is get up, you know, get in the car, get to work, sit all day, get home, have a supper Slump in front of the telly, go to bed. So there's an awful lot of sitting. But again, as I say, we're not programmed to exercise. So we have to find ways of working from a standing desk or using standing wheelchairs or standing frames just to try and build that in so that we move our bodies as much and we don't just hold our bodies in one position all the time.
- [59:05]
B
How can physiotherapists help if the stiffness and spasms are affecting the hands or arms? Because we do see people talk about this sometimes, because most of the focus tend to be on legs, otherwise.
- [59:16]
C
Absolutely. And occasionally you do see people having problems in their hands and in their arms. And again, we would do exactly the same thing. We would look at. We'd establish that it was spasticity there. We would then make sure that we'd got someone to fill in a chart so that we could actually see. See what was happening and what activities of daily living it was interfering with. We'd probably work with occupational therapists to make sure that we have as many aids and adaptations as we can to help people. We would certainly look at medication here as well, and maybe Botox, botulinum toxin, especially in very specific muscles, maybe like biceps or the muscles which flex the fingers. These are obviously in the hand. The finger flexors are much stronger than the muscles which extend your fingers. So if you get a weak hand, there's a tendency for those strong muscles to pull down. And of course, that can be problematic if people then find it really difficult. So what we would say to people is, if you have a bit of tightness in your hands, think about stretching as more than gripping almost, because it's those stretchy muscles that need to be exercised. But we may well ask them to look at fine tasks, maybe that they could do. Maybe they're knitters or maybe they're like a jigsaw puzzle or, you know, using your fingers as. As much as you can. And of course, when we are adults, we hate practicing things, especially when they don't always bring much relief for us. And I think what's really important along the journey of Ms. Is to remember that sometimes staying the same is important, really important. And in fact, I often say to my patients, exercise for all of us. You know, we're all of us getting older. Sometimes what we try to do when we keep active is to stay as good as we can for as long as we can. And it's a bit like cleaning your teeth. You know, you're programmed from a very Small child to clean your teeth twice a day. And we all do it without questioning. And we, we're not expecting our teeth to get whiter and whiter and whiter. And we expect to have the odd feeling when we go to the dentist. So we understand that. And we put moisturizer on our face because we want to keep the wrinkles at bay. Now, we know they're coming, they're just around the corner, but we're trying to keep them at bay. So we do understand that concept of doing a little bit of something to keep as good as we can. But for some reason we expect exercise to make everything better. Yeah. Sometimes it doesn't. Sometimes we just. We're winning if we can stay the same. Yeah. So building a little bit of something into your everyday is so important, something that you enjoy. And just think of it like cleaning your teeth. It can be so good. And in fact, one of the lovely ones that a lot of my patients is we have a little. I give them a little jam jar and I just write a few little ideas and down in the jam jar on pieces of paper. And in fact, we might have two or three jam jars. A jam jar for a good day and a jam jar for a bad day, and a jam jar for an okay day. And what you do is you open up your jam jar on your bad day or whatever, and you take each piece of paper out and what you're hoping for is to empty that jam jar by the end of the day and just get all those little bits of things done. Nothing too dramatic, but just little, little things that can help. So it's, it's just. Just coming up with little ways of, of making it part of your everyday life, which is so important.
- [63:12]
B
I think we've seen sometimes where people come into the. We have a big Facebook group with you at, where people come in and they say, well, I was giving these exercises by the physio and I've been doing them, you know, religiously for. For two weeks and I haven't noticed any difference. This isn't working for me. But, but it is very much like. But if it's not getting worse, then it is probably working, isn't it?
- [63:35]
C
Absolutely. And as I say, I think it's so important to remember that we're not programmed to exercise. And, you know, if you, if you go to a railway station and you stand at the bottom of, you know, often there's an escalator and stairs aren't there? Stand there for five minutes and see how many people take the Stairs, they don't. Because we're always looking to conserve energy, actually, because when we were hunter gatherers, we had to get an awful lot of hunting and gathering done just for a few calories. So we didn't want to waste them on things like climbing stairs. So we have to fight against thousands of years of programming in order to do a bit of exercise. And it's such an important message that. Because people feel like failures and people, as you say, feel like, oh, gosh, this is just not working. But of course it is. Exercise is like watching children grow. You know, you don't notice it, but the important thing is that you stay the same. That's. Or you try to stay the same.
- [64:45]
B
But what if exercising is actually triggering some spasticity and spasms? What, what can we be doing then?
- [64:52]
C
Yeah, well, again, it may well be that that particular exercise isn't for you. It may be the position of your head, that's. It may be your general posture you may be putting too much effort in, which can trigger spasticity. You may be moving too fast, which can trigger spasticity. So it's worth thinking about those as well. If you are going to a gym or you are doing something like a long walk, it may be worth taking a cold drink or a really cold flannel and putting that on the back of your neck when you are working or exercising or doing an activity, even mowing the lawn, because you may well find that everything feels really awful as you start to heat up. So keeping cool is really, really important. But if something really is making it worse, then obviously if a physio has given you that exercise, then you go straight back to that person and say.
- [65:51]
B
This is making it much worse.
- [65:53]
C
And you look for alternatives, but always look to try and find the triggers as well, just in case. And it might be as, again, as we said with the triggers, it might be if you were a woman who's still menstruating. It might be that it's in the middle of the month and you're circadian rhythms are such that your temperature's a bit raised anyway. So it's always worth thinking around the problem. I think to be a. To have, to have Ms. Or to help people manage ms, you have to be a detective, you have to be a Sherlock, and you have to sort of think, right, okay, what is actually going on here? And go upstream. Don't just think about what's happening. Think, okay, what did I do that might have actually triggered that off, made it worse? Okay, maybe try that again. In a week's time and see if it makes a difference. So always think around the problem.
- [66:47]
B
And then often, I mean, when it comes to exercise, there are generally quite a lot of other things you could try, isn't there? If one thing doesn't sit well with you, one thing that we haven't spoken about, which I just realized is how do you get referred to see a physiological.
- [67:03]
C
Okay, well it depends where you go. I mean if you go via the NHS route, then you would go to your GP or your consultant. Your Ms. Nurse may well be able to refer you into a team. What you really want to see is an Ms. Specialist physio, but of course there aren't that many around the country. But what would be ideal is to see a neurological physiotherapy. Really important that because physios specialise just like almost every other profession in the health service. So important that you get to see somebody who has an understanding of neurological problems and especially Ms. You may be able to go to an Ms. Therapy centre where physios are working. There may be one near you and it's worth looking up. You may well be able to see self refer there and see people there. I work in an Ms. Therapy centre now since I retired from the NHS and people can self refer to see a physio, so and obviously we would let their doctor know that we were seeing them and liaise with the other NHS team if necessary. So yes, you may well be able to self refer in some instances, but in the nhs, go through your gp.
- [68:24]
B
Brilliant. This has been so interesting, Wendy. I've learned lots and I'm certainly going to be much more aware where I'm turning my head in the future.
- [68:35]
C
Well, it's interesting and in fact sort of thinking I'll probably close this down and think, oh, there's a thousand things.
- [68:43]
B
I should have said or a thousand.
- [68:44]
C
Things I should have gone into a little bit more.
- [68:46]
B
Oh well, we might well be in touch for a part two later on.
- [68:51]
A
Hello there. This is a break in our podcast. Normally in some podcasts you might get ads in this place, but because we're a charity, we don't do that. So instead we are going to just highlight some of the important work that we do. We fund, train and place Ms. Health professionals into areas of the UK with the greatest needs. We also have a free confidential helpline to support anyone impacted by Ms. We also produce vital information booklets that you might have seen in clinic or potentially on our website too. We produce these resources to help people manage their Ms. And to help them make sense of ms, we listen and speak up for the community at the Ms. Trust. All of these things are only possible due to the generosity of our donors. This is because we don't receive any NHS or government funding. So to be able to continue to provide these vital services, we do ask that if you are able to please do consider leaving a small donation. There'll be a donate link in the show. Notes of this episode.
- [70:00]
B
I learned so much, so much, so much from Wendy. I don't think I've ever had a guest on the podcast before where I've learned so much. All the, the interesting things about the turning the head and your eyes and how that can, can make things in your body happen. I mean, it just made me think about how absolutely amazing the whole, you know, system that we have set up for, for the body to be functioning or malfunctioning, as we discussed a bit to day. And it really just goes to show how extremely complex everything is, as well as the actual managing of spasms and spasticity.
- [70:42]
A
Yeah, absolutely, Helena. And I think one thing that I took from the interview as well was how, you know, how different it is from person to person and how when people are trying to manage the symptoms, you have to really look at the person and what's going on in the whole, you know, rather than, you know, there's not a one size fits all answer to, you know, spasticity and spasms.
- [71:07]
B
No. And I think, you know, so often when we hear about it, you sort of almost expect you to know what it is straight away if you are struggling with it or what's going on. I remember a few months back, I was sitting on the sofa watching TV with my husband and I sort of put my legs up on the side of the sofa and then suddenly my leg just shot out and I was like, well, this has never happened before. But it didn't feel like it was completely voluntary. It was just like I couldn't stop it from happening. And then I sort of put my foot down and put it back up again and then the same thing happened again and I was like, what was that? Was that me actually having a spasm? I don't, I don't know. And then it hasn't really happened since. But I feel like when you work in this field you get so many.
- [71:52]
C
You get so much information, but you.
- [71:53]
B
Still, still don't know what something actually feels like until you have it. And like I said, I still wasn't sure with spasticity. I didn't Know that I, that I had it until somebody actually described to me the stiffness of it, because I quite often struggle with that when I go outside and it's really cold and my muscles go. So then I go, like some of the people had described, where it just feels like the leg goes completely rigid or so stone basis, because just one side of my body that's affected by Ms. And it feels like I suddenly got like a metal rod in, in my thigh. But it took me years before I realized that that was a form of spasticity.
- [72:35]
A
Yeah, it's. Yeah, it's. I wonder how many people are listening to this and thinking, oh, actually, yeah, maybe, you know, I need to have a conversation with someone about spasticity and spasms because not sure if what's been happening to them could be classed as that.
- [72:49]
B
Yeah, yeah, I think going and having a little look at that blog that we talked about in the beginning, where other people are describing it might give you some ideas as well. And, you know, if you, if you are wondering if any of this sort of, you know, experiences sound familiar to what you've been experiencing, maybe talk to your Ms. Nurse or, you know, your GP and express what that maybe is this. Is this something that I should, you know, be worried about? Should I look for any treatment? Should I be seeing a physio? You know, is there any exercises I should be doing? Because who knows, it might improve it and it might actually help it. Because quite often we just put things down to. Well, it's just Ms.
- [73:30]
C
Being a bit weird.
- [73:31]
A
That is right, Helena. Yeah, that could be a great place to start. So remember that if you do have any questions about any aspect of life with ms, please do get in contact with our helpline team, which is available from Monday to Friday, apart from UK bank holidays, and that's from 10am to 4pm so you can call the team on 0800-03-23839. If you do call outside of the hours, you can of course leave us a message and we'll get back to you as soon as we can. If you'd rather email the team instead of speaking to someone on the phone, you can email them your question. That's askstrust.org and we will of course link to all of all of this information in the show notes.
- [74:24]
B
And you can also come and chat to us on social media. You can find us on Facebook, you can find us both on our page. And we have two groups, one for people with advanced Ms. And one for sort of a general big group for people who are affected by Ms. And this is the groups where we were asking people to contribute the comments about Spasticity and Spasms and we will link to those in the show notes as well. But we are also on YouTube x TikTok and Instagram and you can find this podcast in most places where you'll be listening to a podcast like Apple Podcast, Spotify and you YouTube Music. Get in touch. Let us know what you thought of this podcast. We love it if you leave us a review that will help us reach more people. But yeah, please let us know what you thought of this and how would you describe living with Spasticity and Spasms? We'll see you in the next episode.
- [75:22]
A
Bye bye.