Nick
Hi, I'm Nick.
Helena
And I'm Helena. And we both work at the MS trust. A UK charity for people affected by MS. We're here to help you make sense of MS.
Nick
Yeah, welcome back to our podcast, multiple sclerosis, breaking it down. Today we're gonna be talking all about altered sensations.
Helena
So what's altered sensations then? It's basically a bunch of sensory symptoms that can occur in MS. And here are some words that people use to describe it. Burning tingling, pins and needles, crawling, numbness, prickling, tickling, and the list goes on. And Nick as well as calling it altered sensation the health professionals like to use some fancier words for it. So they might mention things like Allodyna, which is where something like a light touch feel painful, even though it shouldn't cause pain. paresthesia, which is annoying, unusual sensation, like tingling or numbness, which might be triggered or just happened spontaneously. And this synesthesia, which is a more intense, sometimes painful feeling that could happen spontaneously. And later on, I were chatting to Dr. Amanda Howard a pain specialist about exactly what it is that happens. And we also have a bunch of questions to ask her that podcast listeners had sent in.
Nick
Yeah, as well as talking to Amanda, we're also going to be sharing some of your life hacks, some of your tips, that you submitted around altered sensations. And so Helena is this something that obviously, you are a person living with MS. It is this, you know, have you experienced altered sensations before?
Helena
Yeah. Especially before I was diagnosed, I have all sorts of weird things going on. I think my actual first sort of inkling that something was wrong was pins and needles in my foot. It just wouldn't go away, I thought I had maybe got like a trapped nerve or something. But it was just like, it felt like my foot was half asleep. And later on like a burning in my arm. My hot and cold feelings got switched up. So if I went into a warm shower, it felt like it was cold in half a part of the body. An odd buzzing feelings and some pain. You name it really. It's such a bizarre and odd feeling. Well, at least this at the start when I was very early in this journey. Now I have to say I sort of noticed it less when it happens.
Nick
Yeah, it's must be quite sort of scary. I guess if you've not experienced some of these things before. And when you're first, you know, getting diagnosed or kind of first experiencing symptoms, it must be a bit of a shock, I guess.
Helena
Yeah, it does feel really, really peculiar because I guess like everybody's had an arm or a leg or something falling asleep for them, you know, if you sit on it for too long, and it just feels a bit weird. But when you haven't, you know been leaning on it, there's no reason for this to happen. You become very sort of perplexed as to what's going on. Same with like burning and things. If you haven't touched anything that burns you and you still have burning, it's very peculiar.
Nick
Yeah. And I remember my partner who has MS when she first experienced an MS hug. And that was really scary for both of us that it kind of happened in the middle of the night. And we both woke up. And obviously she, you know, neither of us knew about this. And it was the first time happening for her. And we're both you know, kind of a little bit scared a little bit edge of the seat because we didn't know what to do in that situation. And obviously, now that we know what it is and now that she knows what it is, it's slightly still something that can be scary, but at least having that information’s really helped.
Helena
I fully agree with like the first time anything happens. It's scary when it happens the second time. Yes, it's still annoying, but at least you sort of know what it is. That's popped up. MS. hug when I had it the first time I'd read a lot about it. But so they still didn't know exactly what it was. But it was Yeah, it did feel quite scary. Yeah,
Nick
it's going to be really interesting then Helena here in your chat with Amanda, I'm looking forward to hearing more about some of those stranger sensations, the cooling the buzzing, the pain. So let's get into your interview now and let's hear what Amanda has to say about sensations.
Helena
I am very excited about our next guest on our podcast. Today we're going to be talking about altered sensations which is a quite strange phenomenon. And our guests today is a senior lecturer at the Department of Nursing at Sheffield Hallam University, who has got a lot of experience with pain management when it comes to multiple sclerosis, and this is Dr. Amanda Howard. Welcome to the podcast.
Amanda
Hi, thank you Helena.
Helena
So I think when it comes to altered sensation, shall we sort of kick off by actually talking what is altered sensation? Because it's got, it's got a lot of different names, isn't it? But what is it and why does it happen in MS.
Amanda
I think altered sensations are generally feelings that people have in various parts of the body, often in their face, but also in legs, feet, hands and arms. And they usually feel something like sort of stabbing, shooting, tingling pain, sometimes pins and needles and sometimes it can almost be like a tickle or just an irritation, they can be sharp, they can be dull, they can be constant, or they can or they can come and go. Now, not all altered sensations are painful. Some people will describe them as pain, some people will just describe them as a sensation. But if they are painful, they're usually down to neuropathic pain, which is caused by the damage to the nerves that happens with for people that have got MS. So people with MS sometimes get these altered sensations due to the de-myelination of the nerves that you know that goes on when MS is happening. So the myelin sheath is there as a protective barrier protecting the nerve, but when it's damaged by the MS, then areas of those nerves in the brain and the spinal cord are irritated. And the nerves are, you know are interrupted, the signals are interrupted. So quite often, it might feel like you've got damage in an area such as your hands and your feet. But actually, it's not necessarily, it doesn't mean that there is damage in your hands and your feet, it could be that the damage is to nerves in another part of the body. But it's just that those nerves supply your hands and your feet. So I think it's quite important to understand that just because somebody has those altered sensations, it doesn't mean that there is damage going on in that specific part of the body.
Helena
And I think sometimes that's kind of the really tricky part of the sensation to get your head around. I remember when I had it before it really manifested as almost like sunburn. And it was moving around in my arm. And I kept on looking at my arms, looking at it read what's going on. And I knew there was nothing there.
Amanda
And you expect to be able to see something, don't you, especially when you've got something like a sunburn sensation, you expect there to be some sort of irritation on the skin. And when that's not there. I think it can be very confusing for people.
Helena
Yeah. And I think, you know, it's like, when you stub your toe, you realise Okay, well, I'm hurting you my toe because I hit it. But then you just sort of think, well, why it's actually the brain that's causing the pain, rather than anything that's happened upon your skin or to your muscles. Yeah, it's very peculiar. How long does it normally last?
Amanda
I think it varies tremendously from person to person. And often altered sensations are awfully one of the first symptoms, like you said that it's one of the first symptoms that people might start experiencing that makes them go and seek medical treatment. But quite often, they will come and go those sensations, those sensations will come and go. So they're not necessarily there all of the time. And as I said earlier, they're not always painful. Quite often, they're just described as being unpleasant or annoying. What is unpleasant and annoying to one person could be painful be described as being as being painful through another. So it's usually down to a matter of opinion. And it can be around patients, or people's different tolerances, and thresholds of sensation. And that can be down to possibly damage that the MS has done to the nerves but also due to people's quite something simple as people's past experiences. And something that starts off being annoying and irritating. If you have it for a prolonged period of time. People may then start saying well actually, this is now beginning to feel beginning to feel painful because that sensation be that can quite be quite debilitating, and it wears people down.
Helena
Oh definitely. You did mention that when people get newly diagnosed or when they're in a process of diagnosis. Could this sort of altered sensation quite often be misdiagnosed as something else?
Amanda
It could be I mean, the way that people describe altered sensations issues with that burning, tingling, like you said, burning pain or tingling or shooting, and there are other things that you know that can cause those sensations, anything that's irritating a nerve for whatever reason. So for example, somebody could have got shingles. The symptoms from shingles can be very, very similar to the pain that people that have got MS. can describe as either being painful or as a sensation. So it could be quite common for somebody with, if they don't know that they have MS, that are presenting with these symptoms that they could actually be diagnosed as having what is we would or medical person could view as being the start of shingles? So yes, definitely, people could be missing, you know, people could be misdiagnosed. But with shingles, we know that it follows a pattern and you know, start getting a rash and then when that rash doesn't appear, you've kind of got the question, what you know, again, what is actually going on, and if it doesn't go away, or it keeps coming back, then it needs to be looked into in more detail.
Helena
I guess that's an important thing to bear in mind to keep on talking to you to the health professionals. I was diagnosed with carpal tunnel syndrome when my burning first started in my hand. And as a, you know, computer worker, I sort of thought, well, I know several people with carpal tunnel so I just thought that that that was it. But it wasn't until I saw a neurologist that sort of said, well, there's an easy test to do to see if you have carpal tunnel syndrome or not. And that's pretty much how I ended up being diagnosed. In the end, they tested it and said, No, there's nothing there. It's absolutely fine. And then I was like, Well, okay, then I guess it's MS. So what sort of treatments are there? Or are there any treatments to get, I guess I should say,
Amanda
There are things that we can look at to manage it. At the end of the day, we can't fix the de-myelination as such. So there are different options for managing these altered sensations or these or these painful sensations. And we can really split those up into two categories, we can split them up into medication and non medication ways of ways of treating them. Options for medication often include drugs that are manufactured for other purposes, such as anticonvulsant drugs, which we use for epilepsy, or, or antidepressants that we use for people that have got long term depression symptoms. Botox is also an option. But the evidence for that is actually is actually quite limited. Routine painkillers, so things like maybe like some paracetamol, or ibuprofen that we would use for the musculoskeletal problems, tend not to be as effective. So the anticonvulsants and the antidepressants, we found to be quite effective for all sorts of different neuropathic types of pains. But we know that alongside the benefits that they have, they also do have some side effects that people sometimes find a little bit a little bit tricky to manage, such as drowsiness, but we can usually get around that by starting patients off or we can start people off on lower doses and gradually building those doses up so that the side effects they sort of become tolerant to the side effects over a period of time. So the non medication treatments that we can use for these altered sensations are very useful and often require quite simple changes in behaviour. So it can include identifying what triggers the altered sensations and then taking steps to avoid them. And it can be things such as avoiding excessive heat, excessive cold, maybe going out, outside when it's windy. Or it could just be someone's postural positioning that that triggers things off. Things like gentle exercises, such as stretching, yoga, Pilates, can be quite beneficial. And also I know that some people have found that complementary therapists may be may also help. These have to be used with caution and only with the support of your GP or neurologists. But from my experience working clinically, massage, aromatherapy, and acupuncture can be used with lots of different types of pains and altered sensations caused by MS. There's limited evidence around this just quite simply because the research hasn't been done. But anecdotally I've come across an awful lot of people that have found those to be to be really really helpful. When I was working clinically I did a study into the use of aromatherapy massage for people with MS. And it helped a lot of people with not just with their altered sensations and their pain, but it also helped people to get a better night's sleep, it helps them to reduce their medication use and also to generally manage their pain or their altered sensations on a day to day basis. So sometimes when we're looking at managing these problems, it isn't necessarily that we can change the problem itself. But we can change how people manage and cope with it by things like sleep if we can improve somebody's sleep, you can cope with things so much better when you when you could get a good night's sleep. So it just changes people's ability to manage things on a day to day basis. Other things that might help people things like relaxation, some people find distraction very useful, pacing and planning and prioritising what people want to do, but it all really stems when people identifying what triggers and what aggravates those altered sensations that they get. And also there are other sensations that they might have with their, with their MS, such as fatigue and tiredness and trying to map it to those to define the best way to manage things on a day to day basis.
Helena
So maybe keeping like a little diary on when things show up could be a useful
Amanda
Definitely can be one of the things that I would suggest people find that it's sometimes when you when you have a pain or an altered sensation, it can be very unpleasant and very difficult. But then if you've go on to having a time, when you haven't got it, it's very difficult to look back and remember what it felt like using those words to describe it, identifying the location. So writing it down as and when it's happening, can be really useful to then be able to go back. And sometimes it isn't till people start actually doing that, that they can identify a pattern. And it could be that certain times of the day or certain times of the week, according to what else is going on in their lives. It triggers things and people just can't see that until its actually mapped out for them.
Helena
That makes sense. I think when we were asking, because we've asked for some life hacks around this, which was very interesting to read. And we'll talk about that later in the podcast. But a lot of people sort of said, well, we just have to live with it. But there was a lot of talk about distraction and coming up with something else to do. So you mentioned that heat could trigger it, or perhaps other weather things.. Is there are there any sort of other known sort of trigger factors that we could try and avoid
Amanda
Sometimes movement and posture, it's basically anything that's going to go to irritate the areas where you where there's where there's de-myelination, and that it's very, very difficult to, you know, to work out. But quite often it's hot and cold is hot and cold is a big one. But also movement, you know, movement posture, that I also think, again, if people are tired, people are fatigued. Those sensations may appear to be to be worse than they would be if people were feeling less tired and less fatigued.
Helena
That makes sense. Maybe things like if you're getting bladder infections or cold virus and things like that.
Amanda
I mean anything where you're where your general health isn't as good as it perhaps normally is. So coughs colds viruses, often will cause people's perception of those sensations and pains to change.
Helena
If people are struggling with altered sensations, who can actually help? I mean, who would be the first point of call, I suppose we could almost see this and two things. If you're listening to this, and you're not diagnosed with MS, but you're interested in altered sensation. What if you don't have an MS team? Who should you approach?
Amanda
I think the first in that case, the first person to be getting in touch with will be the GP. If they are that step further down the line, and they do have an MS team then obviously, the neurologists involved can help but also I would, I would I would anticipate that MS. nurses that are working with them and also any physiotherapists that working alongside them would be able to help and advise would be able to help them advice with that. Obviously GPs and neurologists are in a better position to be able to prescribe medication. But also they may well be able to, an MS nurse is can often do this as well, depends on the services available in the area. But if the neurologist have tried things and the GPs have tried things and they're not people aren't getting any further than I would hope that people can be referred on to pain services within the trust that those neurologists work within. But that obviously can vary around the country about you know about what is available. But definitely physiotherapist can be thinking about things like gentle exercises, stretches that can help, monitoring how different movements and activities might be aggravating things and increasing those altered sensations. It may also be that the physios can then also think about involving occupational therapist if those professionals are available within that area, because it could be that people need help with mobility aids or aids to position them that again, can help with the postural side of things that that could be aggravating the sensations people are getting.
Helena
So there's definitely some help out there to get some people to talk to you shouldn't just be having to put up with not
Amanda
No not at all, I mean, you know, with these, you know, these are symptoms of a chronic long term condition. And yes, we're not going to be able to, you know, magically wave a wand, but there are definitely things that can be done to help people you know, to help people manage.
Helena
That's really encouraging to hear. And I have some specific questions that were sort of sent to us from the MS community. Is it okay if I ask you a few things. So this person said author sensation is an absolute constant thing in my left leg. That tingling that you get from feeling cold is always there. Does anyone feel like it had this these symptoms that just never go away? Or do they just vary in severity?
Amanda
I think that it is common for people to have the sensations there all of the time. But the severity of it varies. And I think a lot of the severity varying is about what is going on with that person, are they distracted? Are they in a position that is, is making it better or making it worse? Are they in sort of like an environment that might make aggravating it from a temperature, temperature point of view, and I think this is the key here is thinking about, you know, identifying what those triggers are, which you can hopefully do, again, we've talked about already about, you know, losing a diary, because it can just help us to identify patterns and trends that you might not recognise if you didn't do that over a period of time. So it's quite common, especially as I think as MS progresses, for those symptoms to become more, more constant. But for the severity to fluctuate throughout different times of the day and night, according to what is going on with that with that person.
Helena
I have a burning pain in the same finger, it lasts for 15 minutes, any hacks, it just hurts so much.
Amanda
So it's something that lasts 15 minutes, that's quite tricky, because thinking about medication, if something's just going to last for 15 minutes, medication is probably not going to have been able to sort of kick in and work in that time. If it's happening very regularly for 15 minutes, at a time, medication could be an option. But if it's very infrequent, and those 15 minutes happen, but not that often, it could be something like applying a hot or a cold compress. And this will vary according to you know, to what is actually aggravating the pain. So sometimes if some If heat is aggravating the pain applying a cold compress to areas can help. And the other way around. Obviously, if cold aggravates things sometimes might find that things like hot water bottles, and a lot of people have got electric, little electric pads or electric blankets that especially with what's going on with the current fuel crisis, I know a lot of people contend they've been buying these sorts of throws that operated electrically to warm up. So it could be that those that might be something. Also, I think mobility of our hands is often something that is neglected over a period of time and hand and finger exercises been done at a point where not necessarily when they have their pain. But over a period of time could possibly help with something with something like this. So it will be speaking possibly to a physiotherapist and getting a series of very quite simple hand and finger and wrist exercises that could be done that could possibly reduce the frequency or the intensity when those episodes of pain happen.
Helena
So that's almost thinking about it in a preventative mode. That's interesting. Here's a quite a tricky one. I would love to know what people do to prevent or treat numb white cold fingers and toes. I can cope with a tingling and altered sensation of fingers. But it leaves me worried that I'm going to lose my digits. So I guess there's maybe more things going on here then.
Amanda
Yeah, that would be my first that would be my first reaction. If somebody is suffering with reduced circulation, you've got… MS traditionally doesn't cause reduced circulation to areas as far as I'm aware. So is there something else going on here? It could be that the altered sensations is due to the is due to the MS. But the what you're saying about the non white cold fingers is actually another problem. There's all sorts of conditions that caused reduced sensation, especially to what we call the periphery of our body. So the areas that our body perhaps perceive aren't quite as important as our vital organs, our lungs and our heart. So if circulation isn't so good to those peripheral areas, it might be that those need investigating that needs investigating separately and looking at as something as well as MS. I think it's very difficult for people with MS because I know that somebody goes to see a healthcare professional with MS. Pretty much everything is put down to the MS. And I think sometimes we need to sort of raise that and think well actually this isn't a common symptom of multiple sclerosis so you know what exactly is going on. If you have got poor circulation. Again, hand and wrist exercises are really useful. Avoiding letting your hands get very cold in the first instance, because sometimes people.. their circulation is okay. But once it's compromised by being very cold, it's quite difficult to get it back. And if you have got reduced sensation is avoiding cuts and grazes and things like that, because if we get put some grazes on fingers, and the circulation isn't good, healing can be affected. But I do think it needs to be looked into in more detail because there could be something else causing that the altered sensations it is the MS, but the actual poor circulation is something else.
Helena
And I think you've really made the point there that not everything is MS. So MS can make things feel worse and because of it. So here's somebody saying it's so frustrating with all that tingling. And while walking, I can feel my leg getting warmer. Is there anything I can do about this?
Amanda
Okay, it could be that the leg is getting warmer, but it would be very unusual for just one leg to get warmer than the rest of the body. So I suspect that what is happening is that you've got the sensation of warmth, but the actual, it isn't necessarily getting any warmer so the nerve damage elsewhere in the body is providing a sensation of warmth. But it isn't actually it isn't actually getting warmer. So it's about managing that, that specific sensation. And it could be something that medication could be considered. But but also again, trying to identify what aggravates it, if there is something that that's aggravating on a day to day basis that you can then go, you know, that you can then go on and avoid.
Helena
That makes sense, I guess I've got I was gonna say something similar, but it will be more if I'm out walking or running. When it's really warm, I can certainly feel some of the altered sensations that I used to have. back way back when I was first diagnosed come to life again, in my leg in it can become a bit tingly. But that tends to be more when the body temperature goes up.
Amanda
Yeah, it's just that usually you don't usually feel warmth in one area, especially a limb. If you're going to get warm legs, both legs would go warm, it wouldn't just be one of them. So I think it's I think it's probably myelinsheath playing tricks on us, or on them making it appear that there is a warmth that perhaps isn't there.
Helena
Okay, so I got the last question here. It says my torso went numb and touching it while getting dressed felt really weird. How long is this likely to last? And why did I get so strange feelings from touching the numb area. I can sympathise with this because I felt very similar when I went a bit numb, it's that almost weird feeling of that your body is not yours?
Amanda
Well, there is there is a sensation called MS hugs that people talk about that that's quite common. And people describe it as a tightness or a numbness. And people sort of say that sometimes they just don't feel that they can expand their chest or perhaps as normally as they could, I don't know whether it's something, it's something like that. Unfortunately, there's no way of knowing how long those feelings are going to last because it will vary from person to person, depending upon how people's MS changes over time. But what we do know is that it does just often go away on its own. So some people, they don't actually need to do anything, it is just something that will become less than then we'll become pretty much not you know, non existent. The numbers can be as a result as a result of the nerve damage that we've already talked about. But also sometimes people experience a tightness around the chest, which can be due to muscle spasm from again caused by multiple sclerosis. And if that's the case, then again, medication is something that can be considered that we really need to try and work out you need to try and work out with your healthcare professional, whether it is muscle spasms, or whether it whether it's down to the neurology that's going on, because the medication that we would use for that would be different. But from what I understand about MS Hugs is that it comes and it can be quite unpleasant. But also it can just it can just stop happening.
Helena
With that question there about the sort of feeling about feeling uncomfortable in your own body because we spoke about you know how to sort of treat the pain or deal with that sort of bit? I don't know, I've spoken to quite a few people with MS. And we see that that people have issues with actually getting your head around why it's painful or why it's doing we spoke about it a little bit at the start as well. Is there any sort of tricks to doing this? I mean, we certainly were MS. Hug. I know some people tie like a belt around them so they feel like there's something pushing so it's those type of life hacks, but is there is there any, I don't know, talking therapies or anything that can sort of help you get your head around,
Amanda
I think for me, it's having a good understanding of what is actually happening. Because I think sometimes it feels that MS is playing tricks on people, because they're feeling things that there is no pathophysiology for, as in, you know, you might have got pain in your or sensation in your hand, but nothing wrong with your hand. I, from my experience, I found that so long as though people have an have an understanding and a clear understanding of why it's happening, then actually, they're much more able to accept it and understand what is going on. I think there's a lot of fear caused by not understanding, because we all do it around all aspects of our life. But if we don't understand something, and we don't know what's going on, then quite often I know I do it, you start thinking, especially at night, when you're on your own when it's quiet, and things start running away with you, when you start worrying about things. Actually, there's quite a straightforward explanation for but if you don't know that, or you don't understand it, you worry about it. And I think the worry can in some instances aggravate and can exacerbate symptoms that you know, that people will get, whereas once they know what's happening, or why, and they know that it's normal, it's obviously not normal, but it's normal people with MS. Actually, that makes it okay, it justifies it. And that can help reassure people.
Helena
It's funny, because you know, when people say it's all in your head, but I suppose in some ways this is actually caused from your brain, isn't it?
Amanda
it is caused by your brain. I mean, it's caused by all the damage within your central nervous system. And a lot of that is, you know, is going on in your brain. But the way that we understand affects the way that we feel about things and the way that we feel about things will feed into potentially feeling worse about worse about things. So it's, sometimes we have to rein ourselves back in and say, Actually, this is an unpleasant episode. But it's normal. It's manageable. It's happened before, and I've managed it before, and I've moved on from it and things have, you know, things will change. It's just when it's actually happening, it can be really difficult.
Helena
That's a good way of looking at it. Thank you so much for chatting to me today. This has been very, very interesting. And we'll pop some links in the show notes for more information about altered sensation. Thank you so much. Thanks. Now, if this was a commercial podcast here is where there would be an advert. But as we're a charity, we don't do that. So instead, we'd like to take the opportunity to tell you about our resources around authored sensations
Nick
You can head to our website, MS trust.org.uk/A to Z. And then if you look under altered sensations, and there's posts on there that that will discuss a lot of what we've been talking about so far. And also that it's a really useful resource as well, the A to Z of MS. So there's terms that you're not familiar with, or something that you'd like a little bit more information on, then go please And do check out that A to Z page on our website,
Helena
And that said include several of those things like Allodynia. And this nice t shirt that I've mentioned in the start as well. So if you've been told something odd when it comes to altered sensations, chances are that it will be in the A-Z. And we also have a very popular blog on the topic. And it's called What's with the strange tingling, crawling, burning and prickling feeling. And it's gonna be linked below in the show notes as well.
Nick
Wow that was really interesting. And I'm not gonna lie Helena at points, you know, could be a little bit confusing there as well for me.
Helena
Yeah, I have to say I find that altered sensation is the one thing that I've had the hardest time getting my head around when it comes to the world of MS. Like, you know, there's pain on my skin, but it's actually caused by the brain and not by an injury. I will say it took me actually quite a few years before I could sort of accept it and just try to live with it when it happens. But I still find it very annoying when it pops up actually just at the moment we're talking part of my hand has gone a bit numb, because I was outside picking my son up and it was very cold. And then my hand just decided that we're going to go a bit numb now.
Nick
That's tough, isn't it? And you know, Helena had been a true professional that she is still going through the podcast.
Helena
I don't need to talk to use in my hands apart from ones who can see me talk with my hands.
Nick
So we also asked the MS community through our social media channels and also reaching out through the podcast. If you had any tips to help you deal with altered sensations. We did get some great feedback and we're going to share some of those tips and comments it's just worth noting that Helena and myself are not health profession. And these tips are not from health professionals as well. So just because they've worked for one person, they might not work for you. So I guess it's worth noting that at this stage, but without any further ado, let's get into your tips and comments.
Helena
So let's start with what's going on here, then that'd be tough pins and needles. Deborah said, I have this all the time in my fingers and a bit in my toes since the very beginning of my MS hard to learn to live with but you just have to. So I have to be extra careful drinking hot drinks are on top of the mug, and regularly smashed crockery, and sometimes the food on my plate. And then it's hard to just sort of shrug it off. It's a huge issue every day. And for most tasks, it makes life difficult. But I adapt. And I try very hard to learn not to let it get me down. But there are times where it makes me cry, because it's so restricting. Some days is worse than others work hard at keeping positive. But there's no easy answer no right or wrong. Just what works for you.
Nick
Yeah, interesting. And now we had Carolyn also on pins and needles. Who said that she uses an ice pack on the air, and that that really helps her. And Noah also has been talking about medication. Again, just to mention, we're not health professionals. And we can't suggest which medication you should take to help your MS symptoms that's really up to yourself and your annual MS. Team. Noah mentioned gabapentin, he's that he it's done wonders for his bizarre leg sensations. And it's strongest when he lies down to go to sleep. And at the beginning, when he first started to experience the sensations, he joked that he just wanted to take his leg off and finish it there. But the medicine have helped him and he says that he's learning that overheating especially affects pins and needles. And it's particularly in his limbs. So that's also something to be aware of, he says that sleeping with a hot water bottle may be really pleasant, particularly in the colder weather. But it can be really, really bad for his neuralgia.
Helena
Rachel she shared some ideas about moving about, which Amanda mentioned as well, constant movement of those toes and ankles and fingers. And wrists help for me. My feet and lower legs are in constant state of pins and needles, but a constant movement of all my muscles and joints help it at bay. In our house, my feet are called Twinkle Toes as they don't stop moving. I think after I've spoken with sitting doing this, with my fingers quite a lot that I think actually does, it does tend to help myself when I get pins and needles in my fingers. So I think maybe, I don't know a bit of hand finger workout is not a bad idea. And Jocelyn said also on the sort of ideas of movements, she uses a vibro plate, then she either sit or stand on it and it helps with several different symptoms. Again, I think we've talked about this on the website, a little bit of whether there's been some research into it or if it helps or not, and some gyms have got these machines, but I guess people can also have them at home. Quite big, big expensive machines, I think.
Nick
Yeah, I was just wondering if they're those kind of big ones that you stand on or sort of stretch on? Is that a would that be the same kind of thing Helena?
Helena
Yeah I think they basically the ones that sort of, yeah, they vibrate, and you can see, you can sort of do squat on them or lean stretch your muscles out and whilst they're sort of vibration plate underneath it.
Nick
Yeah. Okay. Well, let's move on. Now say that the next topic that we were talking about with the MS community was pain, which is obviously a really broad topic, but we were very much looking at it through the altered sensations lens. So Joanna, said she recently got a Shakti mat. And that's really helping with aches and pains.
Helena
So is that one of those spike mats type things or pressure mats?
Nick
Yeah. So from what I understand, it's kind of like an acupressure mat that you use to relieve some of those that some of that pain, some of those sensations. So yeah, it's interesting. Again, I'm not sure how much research there's been similar to the vibro plate but be really interesting to see that if it did come forward too. On the topic of pain, and Karen also mentioned that she has MS hug, and when she has that she says drinking very cold water helps me no idea why it works, but it does and I guess that's like a lot of these Tips from the MS community. We're not saying that they will all work, some of them might work for you. I don't wonder why drinking that really cold water helps.
Helena
An interesting one. But I think as long as it's not anything that's dangerous, I think it's it can be an idea to try some of these things, you know, Simon in the inquiry team, he always used to say like, keep a symptom diary if you want to almost test things yourself. So for instance, say if you had one of these mats, you could try it out and sort of see what was the effect on that and then write it down in your diary. Try This This was what it felt like and then sort of form was do like a little non clinical trial on yourself there.
Nick
Yeah, and I guess, as we say, like everyone's MS is so different, isn't it? It's such a broad condition, isn't it? So maybe really figuring out what works for you is going to be really important, isn't it?
Helena
Yeah. Here's another one for medication. Mike started Gabapentin a couple of months ago and he wanted Sativex, but apparently you have to try two different meds before you prescribe that. Now maybe to mention on Sativex, Sativex is a very complicated prescription. To get a hold of it looks like in the in the UK, we have more information about this on our website. And people generally don't get Sativex for other things than spasms. But we've heard that there's so many people around the country that just can't get a hold of it. But for moving, moving aside from that, so he said also said hot shower bath and water bottle helps me with my leg pain. I actually was prescribed Gabapentin when I had the MS hug and I think it did. It sort of helped me as well. But it took it took a while for it to work. It wasn't like you know, when people take, say paracetamol to get rid of the headaches that it goes straightaway and it probably took a good few weeks before it actually disappeared. And finally Gwen said distraction, I tried to find something more interesting to take my mind off it, or at least push it to the background. A good book is my go to usually. And Amanda mentioned distraction a lot as well.
Nick
Yeah, I can imagine though, you know, in those situations, it must be quite hard to try and distract yourself or take your mind off it in that way.
Helena
Yeah, it did really depends on how bad the pain is. I think I mentioned when I was chatting to Amanda that I had pain that felt like burning pain like sunburn. And for some reason, I found it easier if I went and sat outside where it was sunny, because at least then it felt like there was a reason for it to feel like it was a burn. Not saying you should go out and sit in very, very hot sun. Because that's maybe not a good idea either. But it was just sort of it just made more sense that I could see that there was sunshine to feel that it felt like there was sunburn, but again, it's weird. It's whatever Mind Tricks works to distract you.
Nick
Yeah, it's really interesting is I wonder if there's some link there between your mind kind of thinking that it's somewhere hotter and being in the sun. And yeah, that's really interesting. The next topic that we asked everyone about was numbness.
Helena
This was the biggest issue for me. Well, from all the sort of things that I've had. I went numb in half of my torso for about two months. And I felt like if I was touching another person, if I was, you know, putting my T shirt on or getting dressed or what have you, it just didn't feel like my body was mine, the guy who said that he was joking about that he wants to take his leg off. And that's what I felt about what I wanted to do with my body. It just didn't feel like it was mine anymore. It was really weird to sort of get my head around why it wasn't why it was giving me all these really weird feelings. But yeah, it's really hard to describe. It's because it just sounds a little bit nutty when you talk about it like that. But yeah, it just made me feel really peculiar.
Nick
No, not at all. Well, no, not at all. And I think, you know, from listening to everyone's comments, I think everyone has such different experiences as well. And some of them are quite unique and maybe, you know, this is not conversations that people have had with other people before so I think it's really interesting.
Helena
I do you remember when I tried to describe it to people outside of the MS world and they just looked at me like I was completely losing the plot when I sort of said it feels like my body wasn't mine anymore. But yeah, I've met people who get me. So that's the nice thing about hanging out in the and this community.
Nick
Francis on the subject of numbness said, I find when colder altered sensations are actually much less so being hot or having a fever makes them so much worse for me. Having said that sometimes experience a weird freezing sensation in my feet, for which putting my feet on a hot water bottle helps, try to distract yourself as interesting. Someone else saying to use distraction, avoid touching anything with texture. And then that helps to, say wearing soft, smooth clothing over the area if you can.
Helena
And I think that was a bit of what Amanda was saying, as well. Sometimes you can get bit triggered by textures and sensations and things. Caroline said, you just get used to it. But looking at what I'm holding helps me from dropping and spilling things. And I suppose that's something I had to try and put into practice as well that if I’m going to pick up something, especially if it's like a hot cup of coffee and something, and I know I'm a bit numb in my hands on pins and needles than I have to really look at what I'm doing. So it doesn't end up on my lap. Jeanette said, meditation works really well for her. Except my right leg. I can't sound that out completely unfortunately. So again, I suppose distraction works. But if it's really bothering you, it might be tricky. But keep on at the meditation. If you think that works, though.
Nick
Definitely. And Alex has said, just keep using the affected limb area. If you're experiencing numbness in your limb, in one of your limbs, you'll get used to it, and your body will adapt and can sometimes make new neuro pathways.
Helena
Well, I guess the brain has had an amazing her way of kind of rerouting traffic when it has hit these affected areas. The brain is quite amazing, really
Nick
Lot of great tips there. So thank you to everyone who submitted a tip or a comment on social media or through the podcast. It's also worth mentioning that we did have a lot of people discussing the use of cannabis as well, to help to deal with altered sensations. Again, neither Helena nor I can advise the use of cannabis. That would be something to talk to your MS team about if that is something that you were looking to do.
Helena
And like I mentioned about Sativex, there is stuff to read on our website as well, about what usage there is of cannabis in MS treatment. We can even pop the links in the show notes as well, if that would help. And I did think all the tips are really interesting. I have heard a few sort of ones before and there were some new ones there as well. It's funny how some people think that it helps with being warm and some people thinks it helps with being cold. This sort of really shows how different it is for different people. And like we said, you know, you call it no way there's one size fits all when it comes to MS or MS treatment, really. So I think the best way to do is sort of trial and error with these things. When we started doing research about this podcast, because it's such an extremely hot topic within the world of MS. But funnily enough, there wasn't that much MS. Sort of research out there on altered sensations. Because I think a lot of health professionals use almost be under this sort of idea that it's, you just have to learn to live with it. And one thing I really took away from speaking to Amanda was that you shouldn't just learn to live with it, especially if it's painful, there is stuff that you can do. And there might be treatment, but there also might be other alternative therapies that you could try. So I feel like if this is something that you are living with, and it is really bothering you, do reach out and at least try to talk to them. And like Amanda said that there is pain clinics and things like that as well. I still get shocked to this day where you hear that there are people health professionals that says that there isn't any pain involved in MS. You'd think that this is kind of proven to be wrong by now. But you still hear people who sort of say that that's what their GP or neurologists even have said. So yeah, don't take that if you get told that but actually, you know, keep on talking to your MS Team and give us a call if you're struggling to find out who you should be talking to about this.
Nick
Absolutely Helena, if you do have any questions about MS. About auto sensations or something else that you were wondering about, you can always contact the MS trust. So you can call our inquiry service helpline that's available Monday to Friday except bank holidays. And that's from 9am to 5pm. Outside of these hours, you can leave us a message and we'll get back to you as soon as we can. So go ahead and call that inquiry service on 08000323839. Or you can email us at ask@MStrust.org.uk.
Helena
And you can also find us on Facebook, YouTube, Twitter, and Instagram. And you can find this podcast on Spotify, Google and Apple podcasts and Amazon music and other places where you would normally listen to a podcast. If you want to see us but wiggling our fingers around when we talk. You can also see us on YouTube, where this podcast is uploaded in its entirety. Get in touch and like they say like and subscribe please let people know about our podcast. And finally we would like to say a big thank you to Ann Chapman audio for the music of this podcast and thank you again to everybody who sent in their life hacks though it was really interesting to read
