← The MS Trust podcast
The MS Trust podcast
What does the MS hug feel like? Banding tightness, rib cramps, stitch sensations, girdling pains, and how to deal with it
00:40:24
Loading summary
Transcript98 lines
- [00:00]
A
Foreign.
- [00:05]
B
Hi and welcome to the Ms. Trust podcast. I am Helena and I am your host. I work for the Ms. Trust, which is a charity for people affected by Ms. In the uk. I also live with Ms. Myself and with me today is my colleague Steven. Hi, Steven.
- [00:22]
C
Hi, Helena.
- [00:24]
B
Thank you for joining me again. Of course. So, on the Ms. Trust podcast we like to explore different topics that affects the Ms. Community. That could be Ms. Symptoms or things like going to see a neurologist or preparing for a nurse appointment or work issues. And today we are going to dedicate a whole episode to one Ms. Symptoms, which is the Ms. Hug.
- [00:50]
C
Yeah, Ms. Hug is a quite a common symptom of multiple sclerosis, often mistaken for other conditions. It's often described as feeling as like a tight band around your chest in particular, feeling sort of like, like from your chest to the ribs, as if something is compressing you with pressure or cramping on one side of the torso. For some, it can make breathing quite painful as well.
- [01:11]
B
Yeah. And as you say, for some people I feel like a tight band. But when I, I was doing a bit of research before we went, went into this podcast and I was looking at some search terms, you know, how people land onto the Ms. Trust website and it was quite interesting to find because obviously people have heard of the Ms. Hug. They much they're using that terminology because it's not, it's a weird wording, isn't it, because you call it a hug, which sounds like something nice, but it, but it really isn't a nice thing. So I found things like people are searching for like tight band around chest squeezing pain around rib cage girdling pain, banding sensation, rib cage cramps. The list just went on and on and on. And we often see this in our Facebook group. People go on there and say, what is this? What is going on? This is weird feeling going on. It's not always on. The ribcage can be in other places as well. So it's a, it's a confusing symptom.
- [02:08]
C
It definitely is. I think it's a confusing one and it's really difficult to navigate as well. So we are actually going to hear about some people's subscriptions on how they experience the hog just in a little bit. And then we'll also hear from neurologist Kate Petheram about what the hog actually is, why it happens and if there's anything that we can really do about it.
- [02:25]
B
Yeah, so stay tuned for the, for those later on. But first I wanted to ask, actually, Stephen, have You experienced the Ms. Hug?
- [02:33]
C
I have. Strangely, it was actually long before I was diagnosed with Ms. And it was only sort of diagnosed after the fact. So I used to get what felt like very intense stabbing pains on both sides of my ribs, which very much felt like. I used to describe it like a hot knife in the ribs on both sides. And I never knew where it came from. And I remember a doctor at the time stating that they thought it was potentially neurological when it was never investigated any further. And it was only when I was diagnosed with Ms. And described that I'd been having those symptoms for years. They were like, oh, yeah, that's. That's the Ms. Hog. That's what that is. I was like, oh, oh.
- [03:10]
A
Huh.
- [03:13]
C
So one of those very, very strange moments. Ironically, I've not really had much of it since actually being diagnosed, but I was having it for about five years before diagnosis.
- [03:23]
B
Oh, wow. Okay. Yeah, I've only had it once in my sort of since since being diagnosed with Ms. It lasted I think about a month. When I had it, for me, it was just on one side. So it's really interesting to hear that you had it on both sides because I think that is also one of the things that we've seen because somebody said this comment and I thought it was quite valid. So why do you call it a hug when it's just on one side? So it's interesting to hear that you definitely had it as a proper hug.
- [03:52]
C
I definitely had it as predominantly on my right hand side. I remember that one being particularly intense and more frequent. But I've definitely had it on both sides as well. Not now necessarily at the same time. It's usually been isolated to one side at a time.
- [04:04]
B
Well, that's interesting. So that is one question that I did talk to Kate about later on in the interview. So that's a bit of a. That's spoiler. Spoiler alert.
- [04:16]
C
Nice little segue.
- [04:17]
B
Yeah. So I guess maybe we should just jump into the science behind. Behind the hug.
- [04:23]
C
Sounds like a good idea, doesn't it?
- [04:26]
B
Why it happens in the first place and also, you know, how can you treat it? And yeah, Kate Petheram is a brilliant friend of the podcast. We've had her on before and yeah, let's listen to her now. We are here to talk about the Ms. Hug and we have got another friend of the podcast, Kate Petherman, back to talk to us again. And yeah, I mean, for people who haven't met you before, Kate, would you mind just telling me really quickly who you are and what, you do?
- [04:57]
A
Not at all. Helena, Hi. Nice, nice, nice to see you again. Nice to be back. Yes. So my name is Kate Petheram, I'm a consultant neurologist and I work in Sunderland in the northeast of England and I run our Ms. Clinic and team up here.
- [05:12]
B
And I think we have talked to about two different times about the Ms. Hug in the past. So when, when we decided we wanted to do a whole podcast on the, on the theme, I knew exactly what I wanted for this. So the Ms. Hug, it's not a very, I mean, it sounds quite friendly, but it clearly isn't very friendly. What is it? And, and what does it actually feel like?
- [05:35]
A
So, yeah, I think you have alluded to the fact, I think last time we kind of put this out on social media, people's first reaction was this. Why is it called a hug? Because there's nothing friendly about it at all. So. So it describes a neurological symptom that occurs in people with Ms. That describes this tight band of pressure around the chest, the torso or the abdomen really. And people can describe it as a squeezing or burning or a tingling sensation or even quite a sharp, unpleasant pain. And it can, it can range from being uncomfortable and just something that people are aware of to being something that's really quite painful and disabling. And again, in terms of how long it lasts for, it can last from anything from seconds to minutes, or for some people, it can go on for several hours or even longer. I think we were talking earlier, weren't we, about how, you know, as a hug it can be bilateral, so around the whole of the torso or chest, or it can just affect one or other side of the chest. So that's kind of what we mean when we're talking about the Ms.
- [06:43]
B
Hug and what actually causes it.
- [06:48]
A
So it's generally caused by, or understood to be caused by a, an Ms. Lesion in the spinal cord. So the, if you think of the, the kind of Ms. Scarring or lesions are causing some disruption to the pathways that, you know, take the messages about sensation from the skin or muscles of the chest up towards the brain. And so those messages are being disrupted and that's why you get this uncomfortable feeling. And you. We talked before on a pre podcast about the word dysaesthesia, which just means abnormal nerve sensation. So an Ms. Huck is a type of dysaesthesia which is being caused by the signals being disrupted on their way from the kind of body up to the brain.
- [07:38]
B
It's sometimes mistaken for other conditions we certainly see on our Facebook group when people have never heard of this and they come on to the group and they think, do I need to go to the A and E? Am I having a heart attack? Is this an anxiety attack? There is quite a lot of confusion in this because it's a strange. It's a very strange symptom.
- [07:57]
A
Yeah. And I think it's not necessarily what one. You know, chest pain is not what some. What you expect to have with a condition like Ms. And because it affects the chest and it feels like a squeezing or pressure, it can be confused with heart problems, like kind of angina or potentially lung issues. Or sometimes when it's in the, in the abdomen, it can be confused with abdominal or digestive problems or even like you say, anxiety and panic attacks. And like any symptom of ms, you know, I think it. It's important to exclude those issues. So if people are worried and it's a symptom that they have never had before, then it's entirely appropriate to have that investigated to make sure that it isn't your heart or, or your lungs or a problem with your kind of your digestive system. But I suppose if you run into, you know, once people have had it once or twice and they become familiar with the symptom, then you may be less likely to need to go and have it ruled out every time you have that symptom. Once, you know, once the cardiac. Cardiac problem has been excluded.
- [09:06]
B
Yeah.
- [09:07]
A
But it is challenging. It's hard. And I've seen patients have multiple investigations before. Is it even. Even people with known ms, multiple other investigations before even the penny drops that it might be due to the ms?
- [09:20]
B
Yeah, I think I. When I was newly diagnosed, I read a lot about different symptoms and things, so. So when I first I, I had the Ms. Hug quite soon after my diagnosis. And I do remember just feeling like I had a stitch and which was fine because I was walking around. So I thought, oh, well, maybe, you know, just have a stitch. But then I sat down and I thought, well, normally you don't still have a stitch when you're sitting. And then I sort of suddenly started thinking, oh, hang on, could this be this? I think I'd read it as they call back in those days, it was mostly referred to as the banding sensation, I think. And then finding about Emma's hug. But, yeah, it was really, really strange to sort of figure out what was going on.
- [09:59]
A
And I think some people, it's a relief that that's what it is, particularly if it's not really a, you know, it's more of a discomfort and an unpleasant sensation rather than a significant pain. I think being reassured that, you know, it isn't anything that's going to cause you harm, I think that's the important thing. And I think, because whether or not the symptoms are caused by anxiety, having pain or symptom like that, particularly in the chest, can lead to anxiety and that, you know, so that might not be causing the initial symptom, but you can have, you know, panic and anxiety as part of that kind of constellation of symptoms.
- [10:35]
B
Yeah. Because I mean, especially when you feel a bit restricted, that can cause.
- [10:38]
A
Yeah, yeah.
- [10:41]
B
How common is it? Do we know this?
- [10:44]
A
Like with most of the things? I think it's very hard to estimate. And I looked this up and I think there are varying different. Anything from kind of 10 to 40%. So I think actually was between 1 and 4. So about 25%, up to 40% of people with Ms. May experience it at some point. But. Yeah, so it's not an uncommon symptom for people to get.
- [11:06]
B
You already mentioned this a little bit, but because we'll mostly talk about it feeling sort of around the ribcage, but it can actually happen in other places as well.
- [11:15]
A
Yeah. So obviously you wouldn't necessarily call it an Ms. Hug if it helped, if it kind of occurred elsewhere. But people can get similar symptoms in the kind of hands and feet with a tight sensation or a band like sensation around, you know, those areas or even around the head or the neck. So it can potentially affect. A similar sensation can occur pretty much anywhere in the body. If these signals are being disruptive, it just depends on where that damage in the spot in the, in the nervous system is. Obviously it's not going to be spinal cord. If it's the head, that would be a brain lesion.
- [11:48]
B
Okay, right. Are there any like triggers or things that can bring it on?
- [11:57]
A
So I think people report that, you know, you can be triggered like other Ms. Symptoms by heat or by emotional distress or physical stress. So, you know, when you exercise you get hot, so that's more likely to trigger it. Or an infection, for example, or sometimes, you know, sudden changes in posture might make it more likely to occur. Those are the main triggers. So similar triggers to any other kind of intermittent Ms. Symptom.
- [12:27]
B
And is it ever sort of a sign of a relapse or anything else sincere, you know, severe. That might be going on as well.
- [12:36]
A
So it can be the, it can be the first sign of a relapse if it's the first time someone's ever had it, they've never had it before and it lasts for more than 24 hours. Then I might be concerned that it represented new activity and it would certainly be a trigger to me to perhaps, you know, image further down in the spine, for example, to look for lesions that way if it was brand new and they'd never had symptoms like that before. And the other kind of, I guess, thing to look out for is any other neurological symptoms that might suggest that this is new and different and could be part of a relapse. But other times, and probably more often than not, it's due to old damage within the spinal cord which has been flared due to kind of other triggers like heat or infection.
- [13:23]
B
When, when I got it, I remember it started like I felt like just a stitch and then it was more like a pressure and then I went numb in half of my torso as well. And that was. So I had like a proper full of blue blown up relapse that probably lasted about a month or so. But. Yeah, but it all started just by feeling a bit uncomfortable and then it sort of escalated into.
- [13:46]
A
Yes, I think that's a really good example, is that you had the kind of hug, but then you had, you know, then you had other sensory symptoms and interestingly. Can I ask you a question?
- [13:55]
B
Yeah, of course.
- [13:56]
A
Do you have, have you had the kind of sim. Have you had the hug symptoms since then as a kind of, you know, as a. No, it's a flare of it. You've never had it again?
- [14:04]
B
No. And I, it's, it surprises me so much because a lot of other symptoms that I've had, you know, like tingling in, in certain places or feet or, or hands, they, they kind of come and go a little bit. But the hug that thankfully touch wood hasn't come back here because it was, it was horrible. I think it was one of the worst. That combined with the numbness was just, it was not pleasant at all.
- [14:26]
A
Yeah, it's like, suppose it's, it's easy for us to get forget as kind of physicians how unpleasant that sensational symptom can be. You know, we might say, oh, well, it's just sensory. It's not weakness, but, but can be really, you know, disabling and horrible.
- [14:41]
B
Yeah, I think it's quite a lot to deal with that. It just feels very weird. And it kind of felt a little bit like my body wasn't my body feel like I had to like disassociate a little bit to my body and it was. I did not. I wasn't a big fan, that's for sure.
- [14:54]
A
You should definitely rename it. Right. It's not huggy at all.
- [14:57]
B
No, that sounds way too, too nice. If somebody is experiencing an Ms. Hug for the first time, what should they do?
- [15:06]
A
Yeah. So I think, as we discussed before, I think we need to make sure that it isn't caused by anything like kind of heart or lung disease. So it's not unreasonable to attend either a GP or an emergency kind of healthcare provider to make sure that you've had an ECG and it would depend on the other symptoms like we've described. But get in contact with your neurologist or your Ms. Nurse, particularly if you've not had it before, and they would hopefully arrange for a review, whether that be initial telephone triage and then face to face review. And then really it's about then taking the history and the rest of it, the symptoms in context and deciding whether it relapse or whether it's due to a flare of old activity. And that might involve repeating repeating MRI scans or doing urine dips. So that's what I would always do if someone approached our team with worsening or new symptoms, even is we'd always do a urine test to make sure that there is an infection that could be bringing kind of old activity to the forefront.
- [16:09]
B
That's good. Here was a question that quite a few people said. Are there any techniques that you know of to make them better, make the pain pass quicker?
- [16:19]
A
Yes. Obviously I'm not the expert because I've not had it, but you know, the gentle stretching, deep breathing, relaxation techniques or, and people vary, so either a hot pack or a cold pack. And again, try both because one helps. You know, I'm told that, you know, heat might help some but cold might help others. And again, similarly with the clothing that you're wearing, because this is a disastrotic symptom and you might be hyper sensitive in that area. Some people find loose, loose clothing will be, you know, will be more comfortable. But similarly, other people might find tight clothing, so not having that rubbing might be better. It's about kind of working out what works for you. And then again, you know, it's really hard, isn't it? But mindfulness or distraction, so distracting yourself away from this sensation and the knowledge that it isn't kind of, you know, once we've, you know, had it assessed and whether or not it's a relapse, it's, it's not a heart attack, it's not doing you harm. So I think that knowledge is important to just enable you to kind of help it pass and relieve the anxiety surrounding it because it can be really like, as you said, a really horrible sensation. And we know that horrible sensations are going to lead to kind of emotional reaction to that and that can make things hang around for longer. So you know, again it sounds, it's easy for me to say, I know and it's not necessarily easy to do but that distraction and kind of getting away from it if possible. If possible.
- [17:46]
B
I think when I had it it was never super duper duper painful but I, I definitely had that feeling when you were saying about clothes because, because my body was feeling numb. I didn't like the feeling of things touching because it just felt weird. It wasn't like it was my own body. But around the actual Emma's hug pain I liked to have something kind of tied but tied. So it was a little bit like having something very loose but tying like a cord or something around. So it was, I was very fussy.
- [18:15]
A
But it's about doing about what works for you, doesn't it? I'm sure, I'm sure there's a fashion trend which that would fit with.
- [18:21]
B
That's true.
- [18:22]
A
Tight band with a blousy top, I'm.
- [18:23]
B
Sure like some sort of flouncy pirates or something like that.
- [18:28]
A
That's what's an idea.
- [18:33]
B
Do we know if there's any sort of lifestyle changes or self care technique that could help manage it?
- [18:40]
A
So again it's about avoiding triggers. If you, if you've identified a particular trigger for, if you, you know, if you're someone that's getting an Ms. Hug a lot. So what are the triggers that make it worse? You know, is it when you overheat, can you avoid overheating? Can you make sure you stay hydrated? You know, I'm not, I'm not demonstrating a good posture but good kind of posture. So you're not kind of, you're less likely to kind of irritate the spine and kind of regular sleep. All the lifestyle stuff that we kind of know we should do. But it's very hard to put in practice particularly like this is going on. So. But those are the kind of things I would recommend which will help, you know, symptom control in general. But yeah, this as well.
- [19:23]
B
Well, let's talk about medical treatment then because there is a few of those as well, isn't there?
- [19:28]
A
Yeah. So I guess you may want to discuss if it is something that's going on very frequently. Or very severe or very long lasting. You know, some of the medications that we use for neuropathic pain, so drugs like pregabalin, amitriptyline, probably less, probably less used less often. Carbamazepine is one that I use as well. Particularly if it's a short, sharp kind of pain that comes and goes quite frequently. That can be quite useful for dampening down those signals. There's some, in some people, it might be due to muscle spasms as well. We didn't talk about this. So the muscles might be spasming in that situation. If there's a more clear history of spasms, then, you know, things like Baclofen might be useful. But again, it depends a little bit on how often you're having the symptoms and how severe they are and whether it's more of a spasm or a sensory kind of numbness, tingling, that dysaesthesia. But they won't, you know, they won't. Those medications aren't going to cure the hug. They're just going to reduce the severity of the symptoms associated with it. And also you have to balance those medications against the side effects that they come with them. So they can be quite sedating sometimes in people. So you'd want to use the lowest possible dose of any medication and then probably not necessarily be on it forever. So just use it for a bit and then try and reduce off it and see if the symptoms come back. And if they do that can be reinstated. But you want to avoid trying, you know, being on these drugs for a long period of time if you don't need to be on them for a long period of time. Time.
- [21:09]
B
I think if I share what for me, they, they gave me gabapentin, which I guess worked for, for when I had it. The one thing I would say was what exactly what you said there about like tapering off it. Because I did not, I clearly hadn't paid attention that that was what I did. So I, my pain stopped and I stopped taking them and then felt absolutely awful.
- [21:28]
A
Yeah.
- [21:29]
B
So I would definitely say if you, if that happens, listen to what your health professional is telling you what to do with the medication.
- [21:36]
A
Yeah. If you don't want any of those drugs, you don't want to stop suddenly. If you've been on, particularly if you've been on a fairly high dose, you kind of want to taper it back down in the same way that it was kind of tapered up. Yeah, but, yeah, yeah, good tip.
- [21:50]
B
Any other sort of things that people should think about with the, with the Ms. Hug as my sort of last question. Is there any. I mean, I think one of the things that we've spoken about is that kind of being a bit kind to yourself when you're thinking about these things because it's, it is a bit strange to get your head around it, isn't there?
- [22:09]
A
Yeah. I think again, it's perhaps hopefully this has been useful in helping people understanding what it is that. But like you say, be kind to yourself, acknowledge the symptoms, be aware of them, be aware that they're not, you know, that the symptoms aren't causing you harm whilst they're being, whilst they are very unpleasant and there are ways of managing them. But, you know, please, if people are getting these symptoms and they're worried about them, you know, reach out to your Ms. Nurses patient forums and I'm sure that we'll get some comments and there'll be people with better, you know, people that have gone through it, like yourself, Helena, that have tips that can. To help manage this because it is a kind of unpleasant, probably under recognized but very common symptom of Ms. Yeah.
- [22:59]
B
I think at least a few times a month on our Facebook group, someone will come on and say, I'm having this incredible. And. And so many responses because people, I think this is the Ms. Hug, you know, because people don't. They just completely confused what it is because it's like you say, it's not something that you might have expected with ms, but it's. Yeah, I think it's important to kind of read up on it, but also know that it will. Just because you read that somebody might feel it like it's a horrible heart attack and other people will say that it feels like a minor stitch. So.
- [23:34]
A
Yeah. And for others it might just bit of tingling, you know, it feels like your bra straps too tight or, you know, so it is very like with everything else in ms, it's very variable and individual to each person. So difficult to difficult to predict the onset. Like, you know, you, I think, reassuring, you've had it once, you never had it again. And that might be the, you know, that might be someone else's experience as well. Whereas people might get it recurrently, in which case they might need more, more support. So if I, if I know if I've learned anything about ms, as I'm sure you would agree, Helen, how kind of variable and individual it is in terms of symptoms.
- [24:12]
B
Yeah. Well, thank you so much, this has been really interesting and thank you for talking to us again about the msi.
- [24:19]
A
Well, I hope, yeah, I hope it isn't, I hope it's useful and I hope some people can. And again, any comments or queries, always welcome.
- [24:28]
B
Now, we're at the middle of the podcast and if this was a commercial podcast, this is where you normally would find some advert. We are a charity, we don't do adverts, but we like to take the opportunity to tell you a little bit about the resources that we have for people living with Ms. And of course we do have information about the Ms. Hug as well. Our website, mstrust.org.uk has got tons of information about the Ms. In general, but if you want to find specifically information about the Ms. Hug, then click onto the A to Z and then go to M for Ms. Hug and then you can read all about it there. And there will be links to other things that's been mentioned in the chat with Kate as well. And I will pop a link in the description as well. Now, Stephen, as you're sitting with me today and you're working in the fundraising team, how about telling me or, or everyone about what's going on? Is there anything people can get involved with coming up?
- [25:27]
C
One of the exciting ones that I do, as someone who lives with Ms. Myself, one of the things I really like to get involved with on the fundraising side is stream for Ms. I actually streamed for the Ms. Trust back in 2020. It was the first time I'd ever thought of streaming. I didn't do it before, it just seemed like a nice thing to do during lockdown. So every six months we have a special weekend where we promote people to go live to change lives. So whether That's Instagram, Twitch, YouTube, Kick, there's so many different platforms, it's never been easier to stream. It's really accessible for anyone. You can do it just from your phone or from your PC, whatever works for you. Sometimes we get people who just want to talk about Ms. And raise awareness. Sometimes people do gaming challenges, various fun little bits and bobs. We've had a 24 hour board game stream done by one of our fundraisers recently as well. So there's loads of different ways that you can get involved and highlight things that you're passionate about outside of your Ms. Whilst also raising awareness, which is one of the things I really like about it.
- [26:28]
B
It's a brilliant thing to get involved with. And actually the, the theme song for this podcast was done by a chap called Ann Chapman who made the, the the theme live on a stream for streaming for us. So that's a very interesting one to watch if you're into music and kind of thing. So it really shows that you can kind of do whatever you want, really, when you're streaming. Absolutely right. We promised at the start that we will actually hear from some other people living with Ms. About the Ms. Hug. Obviously, I've shared my experiences, we've heard Stephen's experiences, but we have had a few different people send in some videos describing them, so we thought we would play a few of them.
- [27:09]
D
Now I'd like to share my experience with the Ms. Hug. It's pretty much constant. I don't know if that's because my lesions are more spinal cord than brain, but it's there all the time in some shape or form. It sometimes is as sudden and painful as if my bottom rib on each side, left and right, has been snapped off or broken. It's a really sharp, digging, burning pain and other times it's more corset like, you know, the traditional Ms. Hug definition of being like that, it moves too, so it is not consistently in exactly the same place and it can take my breath away. It has changed how I breathe when I'm speaking. I speak a lot for my job, so that's for me, something. I guess I've noticed an adaptation over time in the way that I take in breaths so that I've got enough in there to speak. I think it's the impact that the Ms. Hug is having on my diaphragm and therefore squeezing or constricting to the extent that a thoughtless breath of just breathing in casually is not going to give me enough to get through a sentence. So the impact of it is physical, feeling it more widely, I suppose, of my system and psychologically, I guess, tiring. It's boring and I'd like to have a period of time without it being there.
- [28:40]
E
To me, the Ms. Hug feels like I'm wearing a bra that's about three sizes too small and just really, really tight band round round my chest. It's not something I've experienced a lot and hasn't lasted very long, but really isn't a very pleasant experience.
- [28:57]
B
Experience.
- [28:58]
E
I also do get really tight bands around the top of my arms. I'm not sure whether that's an Ms. Thing that happens a bit more often and it just feels like a really tight elastic band around my arm. Fortunately, I don't experience it often, but it's just another symptom you get used to.
- [29:19]
F
Hi. I want to describe the Ms. How the Ms. Hug comes to me as a Headache and a pounding heart and tightness in the chest. It usually comes in the night but sometimes it comes in the afternoon or any other time in the day. It's not GERD because GERD comes with a heart pain, not pounding in the heart. That's the main difference between the two.
- [30:13]
G
So the first time I had MESS hug, honestly I thought I was having a heart attack. My chest was really, really tight. The pain in my chest was horrible. It was really dull, but it was so intense. I had read about the Ms. Hug before, which is the only reason I didn't end up going to A, because I thought that that was highly likely what it was. I did phone the Ms. Nurse the morning after just to kind of double check and that is all it was. So thankfully it wasn't anything worse. But it is bad enough. Normally it just feels like somebody has got their arms round me and is just getting. It's just getting tighter and tighter and tighter and there's a really intense dull pain that goes with it. It's not. It's really sore, but it is a kind of achy. It's not a sharp stabbing pain or anything. It comes with a kind of shortness of breath and honestly, not really very much that I've tried has ever helped it. I've tried multiple different meds. I'm on muscle suppressant, muscle suppressant, muscle relaxers. Anyway, they didn't help. Heat didn't help. It just kind of went away on its own after a few hours.
- [32:00]
C
We also asked you for some tips on how to deal with the Ms. Hulk on our social media. Here are some of your suggestions. Remember, these are tips from people with ms, not health professionals. So always please just check the one first if you are needing treatment. Jenny said breathe through it. I find it gets worse if I'm stressed, so I just have to give myself a little bit of time to breathe. Diane suggested painkillers, hot wheat packs, soaking in a hot bath, heat rubs and waited out sometimes 24 hours and sometimes weeks. Sometimes I feel like I'm just getting on back on top of it and then it comes back with a vengeance. I've definitely experienced that myself as well.
- [32:34]
B
Yeah.
- [32:35]
C
Leslie also said I also try to relax and get through it. I have a focus point that I concentrate on and sometimes put headphones on and listen to music.
- [32:44]
B
Yeah, there seem to be a lot of people talking about distraction techniques. Actually, Lanya suggested I like my wheat bag. Another vote for the wheat bag rather than an ice pack. Heat always makes me sleepy so I can relax Standing and stretching also helps and moving. If you're having to go out and continue your day, try Spanx. That's like the compression tights. Yeah. She says the compression helps. And speaking of compressions, Lexi said, definitely go braless for the ladies. It felt like I was already wearing one. So that's almost the opposite there of having that tightness that. To not have the tightness. And I think that's quite interesting because I saw a big mixture that people sort of liking the tightness or people wanting just loose clothing. I don't know how you felt, but I remember when the one thing I did when I had it was that I. I tried my bathroom robe, you know, the cord to it, and I tied it just sort of above my. On my rib cage. Because for me, it just made sense. Sense that something was there to. To push, because I just didn't understand why it felt like there was pressure there. So if I had something that was actually pushing it, sort of my brain kind of relaxed a little bit and went, okay, well, there's a chord there. It makes sense why the. The pushing is there. It might sound really stupid, but it did help help me.
- [34:07]
C
I mean, I don't think there's anything stupid about something being psychosomatic and working for you. If you're presenting it in a way, your brain is going to interpret that differently. So, no, that totally makes sense. I think personally, yeah, definitely put pressure onto. Whenever I've had the stabbing in my ribs, I've kind of put my hand there and put pressure and, like, created that warmth. I always found that the pain was so strong for me that I basically would have to curl in the fetal position on the couch and just kind of try and relax and wait it out. And nothing else ever really seemed to work for me, to be honest. But I definitely agree with a few of our submissions here about relaxing and, yeah, creating that sort of pressure and heat definitely seems to ease it a little bit.
- [34:45]
B
Yeah, we've heard a lot of people talk about mindfulness and things like that as well. And I feel like sometimes when the pain is not going to go away, kind of breathing through it and kind of knowing that you are safe. You know, Kate mentioned that as well, that. That it sounds tricky to go through it, but I feel like it's worth trying because it will. It will help. Not demonstrated, but I used to get gallbladder attacks when I had a gallbladder. And I do remember that was a case of, like, you say, you in fetal position and kind of just breathing through it, it felt like birth at times it was not pleasant. But that kind of breathing and kind of thinking it will pass, it will pass, did, did help for me. But another point that we should make here, which Kate also mentioned, is that sometimes these kind of pains are really not related to the Ms. Hug at all. And you know, if you're having any kind of breathing problems or think that anything is relating to your heart or you should definitely go and see a health professional. It's better to be safe than sorry when it comes to these things.
- [35:55]
C
Absolutely. And I think any neurologist I've ever met has said the same thing. It's like we would rather you bothered us than not because we need to, we need to be certain. And also the sooner that we can address these things if they are a mess, the sooner we do something about it. But also if it isn't, at least.
- [36:10]
B
We can rule it out and give.
- [36:11]
C
You peace of mind.
- [36:12]
B
Yeah. And it's so easy to put things down to Ms. It was, it was really bizarre actually because I've just, just, I'm still got them coming off having shingles and it started a few weeks ago and I, it started with kind of burning pain around my rib cage and I thought it was so strange because it was just after I'd done the interview with Kate and I was kind of thinking I haven't had the Ms. Hug for so many years and why am I now suddenly getting both in the ridge on the front and the back burning pain? And how is this? I was almost thinking my mind was playing some weird trick on me because I'd been reading so much about the msi, what is, what's happening. And I just put it down to, because it was very much the kind of neuropathic pain rather than, you know, it wasn't sunburn. So I thought it was Ms. Related. And it wasn't until I suddenly started getting a rash that I realized, oh, has nothing to do with ms, this is shingles. Luckily I got treatment really quickly, but it was, you know, it's, it's, it's so easy when you live with a condition like Ms. To just kind of go, oh, it must be the Ms. That's doing weird things to me.
- [37:18]
C
And the thing is you need to remember as well as people who often are on disease modifying therapies, we were often immunocompromised. I know shingles is one I've always been quite afraid of because I never had chickenpox as a kid. So knowing that I'm immunosuppressed and I've got a small child, you know, being a father to a toddler, I know at some point it's coming for me. And it's one of those things that you need to be aware of because as well now, even if something that you've contracted might kick off neuropathic pain, might kick off something to do with your ms, the Ms. Isn't the root cause, it's a, it's an after symptom. Your, your, your body is responding to that increase in immunity which is trying to defend you and there is actually an underlying cause there behind it and you need to explore it, you know, very thoroughly and make sure that you've ruled all the things out, not just the Ms. Yeah.
- [38:06]
B
And it's, it's so important and it's, it's. Sometimes we might feel like, oh, I don't have to bother the health professionals again. But you know, that's what they're there for. Like you said, it's better to, to, to ask than to sit in silence and suffer.
- [38:20]
C
Absolutely.
- [38:22]
B
Well, thank you so much, Stephen, for, for coming and chatting to to me today with them about the Ms. Hug. It was nice to share it. I don't know, it's nice to talk about the msr, but you know, it's nice to share experience with someone else with Ms.
- [38:36]
C
Pain shared is pain halved and all that.
- [38:40]
B
Thank you so much.
- [38:41]
C
No, thank you. Pleasure.
- [38:42]
B
So that brings us to the end of the podcast. Thank you so much to everyone who's been helping out making this episode big. Thank you to neurologist Kate Petherum, to our people with ms, Inga, Mohammed, Caroline and Justin contributing, talking about their experiences with the Ms. Hug. Thank you to Stephen, my co host and we hope that you found this episode helpful. If you do have any questions about the Ms. Or the Ms. Hug, remember our free helpline is here for you. Call us on 0800-323-839 from Monday to Friday, 10am to 4pm, excluding bank holidays and if it's out of hours, just leave us a message or we can get back to you. Or if you prefer to email, you can do that@askmerstrust.org you can also contact and follow the Ms. Trust on Facebook, YouTube, X TikTok and Instagram for updates, videos and other useful content. Come and be social with us. And don't forget you can also find this podcast in all the usual places, places where you would normally find a podcast like Spotify and Apple podcasts or on YouTube. You can also find this as a video on YouTube, please get in touch and tell us what you thought of this episode and what you would like to hear from the Mistrust podcast in the future. And if you did enjoy this episode, please give us a review and share it with anyone who might find it useful. Until next time, take care and we'll see you in a month.