Managing fatigue living with multiple sclerosis

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Nicola: Welcome to the MS Education Podcast Series. Thank you for joining me. I'm Nicola Graham and in each episode, we're going to be joined by an expert to discuss strategies for living well with MS.

Today I'm talking with Andrea Salmon. Andrea's worked at MS for over 17 years. Starting as a low com occupational therapist, working alongside me in the education team. Over the years, Andrea's been involved in many fatigue management programs, so I'm really looking forward to talking today about some of the practical aspects Andrea's learned over the years regarding fatigue in MS.

So, welcome Andrea.

Andrea: Thanks, Nicola. It's a pleasure to be here.

Nicola: Now I know that fatigue is one of the most common symptoms of MS occurring in about 80 percent of people, but what actually causes MS related fatigue?

Andrea: It's a great question and, yes, that stat is right. Fatigue gets the label as the most disabling symptom in MS, which is really challenging, and I think that's because it stops people doing what they want to do, and the truth is we really don't know exactly what causes it.

There are a few different schools of thought. One is that fatigue is a mechanism within the body to make us rest when we're unwell. So perhaps the fatigue in MS is related to the body trying to fight the immune attack that's going on. There's also the consideration that living with a chronic illness is emotionally draining and physically draining and it has an impact on our mind, which we know is related to the feelings of fatigue. And then we've also got to be aware that multiple sclerosis is a disease of the brain. So, performing all our day to day tasks are going to be more difficult and more tiring for a brain that is damaged in some way. It's a challenging thought, but it actually is a reality for people living with MS, and fatigue can be different for everyone.

One of our clients described MS fatigue like this. They said that for them it was much more than just being overly tired. “It causes me to feel weak, light headed and nauseous. It affects my eyesight and causes my speech to slur, and I find it impossible to concentrate on whatever I was doing. This can happen to me many times a day, and it's a whole lot worse if I become warm.”

Nicola: I think, Andrea, as I hear you reading that comment from a client, there's so many people that I listen to say that they find it really hard to explain what their MS fatigue is, because people who haven't got MS think, oh yeah, I understand that, I get tired too, but it's actually so much more, isn't it?

Andrea: And there are different types of fatigue too, Nicola. We see fatigue in a lot of neurological conditions, but while It's quite generalised. In MS, there's a fatigue that gets the label of lassitude. It's that overwhelming kind of fatigue that comes on for no apparent reason, and not related to anything that the person's been doing. Most people find it's usually worse in the afternoon, and people describe it as like hitting the wall.

But there's also another type of fatigue that seems to be unique to people with multiple sclerosis, and that's a nerve transmission related fatigue. Gets the name nerve fibre fatigue, or sometimes activity related fatigue. This type of fatigue stops people completing tasks, especially tasks that are repetitive and are needing the same nerves to fire repeatedly in order to do the task. Things like writing, typing. hanging out washing, pruning, reading, and sometimes even walking. Someone might start off walking fine, then after a little while they notice that one of their toes is dragging, one foot, and if they sit and have a rest, they're back walking fine. It's kind of like the damaged nerve is unable to keep firing in order to do those repetitive type activities.

The performance drops off, but then after resting those nerves, the activity can be completed, and given that so many of our daily activities at work and at home are repetitive in nature, such as all the meal prep stuff, garden work, hobbies, this is going to have a huge impact for people.

Nicola: So, what are the key tips, Andrea, for managing MS fatigue?

Andrea: Great question. Well, we used to say that rest breaks were the number one fatigue management strategy, and in truth, they probably still are. Regular, short rest breaks prevent that lassitude coming on, and breaking up repetitive tasks so that the nerve fibre fatigue doesn't kick in is helpful. But we're also aware that people really need to have a look at their expectations and priorities.

The frustrating reality when you're diagnosed with MS is that you're probably going to have to make some changes to what you were doing prior to your diagnosis. It's invisible, but you're living with a chronic lifelong condition affecting your brain, and while we have different degrees of adaptability within our brains it's probably not going to function in exactly the same way. So, something has got to give, and I reckon it's far better if you're in control of that and consider what's most important to you to maintain, and what can go.

Again, it's challenging, but really important to have a think about what you can delegate to others, what you're doing that you don't actually need to be doing. But, as we said, rest breaks are really important for getting through the day, even if it's just a proper break at lunchtime and then a couple of mini breaks morning and afternoon. Other key areas to consider in managing fatigue are learning to pace yourself and to plan your day or your week. Things like managing heat sensitivity and making sure you keep cool, eating well, getting a good night's sleep and, interestingly, making sure you keep exercising.

I know it sounds really contradictory to be saying to exercise when you're feeling fatigued, but really, all the research is showing us that it's one of the keyways to help improve your experience of fatigue.

Nicola: Okay, great, there's some fantastic tips there. Can I just clarify, Andrea, with the rest breaks, do you rest before you get over fatigued, or how do you schedule in your rest breaks?

Andrea: Absolutely. Rest breaks are like topping up your batteries if you think about it in that way. You don't want your batteries to run completely out, you want to keep them topped up. So, some people are as diligent as, putting it in their diary, that I've worked out I need a rest break at 10 o'clock for 15 minutes, and then I need another one at 2 o'clock, and maybe that one's half an hour. But actually, scheduling in those rest breaks before you hit the wall.

Nicola: That's great, and how much of an impact does sleep have on fatigue?

Andrea: It's actually amazing how much we forget to consider all the other things that can have an impact on fatigue, and sleep is a huge one of those. But they also include your mood, medications you might be on, how well you're eating and your level of fitness.

But this crucial contributor of sleep is so easily overlooked, and so many people don't sleep well, and it's got to be the number one thing for minimising fatigue. So, for people with MS, there are even more reasons that their sleep might not be so great. Might be bladder changes, making them up to the toilet three or four times a night, could be painful spasms, could be stress and anxiety, and these things can all contribute to poor sleep, but the MS itself might be causing sleep problems. We actually know that the incidence of sleep disorders is higher in the MS population than the general population. So, check out the podcast on sleep and get some more information about that but, quite seriously, if sleep problems are persisting for you, you really need to talk to your GP or your neurologist about getting a referral to a sleep specialist.

Nicola: Fantastic reminder, Andrea. So, listeners, please do check out the MS podcast on sleep.

Going back to fatigue, what if people are making the changes that you've suggested, they're looking at the things that might be contributing to their fatigue, and yet the fatigue is still having a huge impact on their life. What else can they do?

Andrea: Look, it's a tough one and I'm certainly not trying to make it sound easy to manage. The experience of fatigue is really complex. The fatigue can also be related to other symptoms. For example, if someone's experiencing some cognitive change, their fatigue's likely to be worse because they're working so hard to concentrate. Or, if their balance is off, they're going to be more fatigued because they're working physically hard not to fall over. So, for some people, they really need to explore whether medication might be able to help. There's actually not a lot of evidence that the medications for fatigue work for everyone, but there are some medications that neurologists or sleep specialists can prescribe to help people manage their fatigue. But it's always a good idea to ensure that you've checked all the lifestyle factors first.

Nicola: So, what can we do to ensure we've considered everything that we can do?

Andrea: Well, I would always encourage people to be eating well, exercising regularly, and sleeping well. That's a first step. Then maybe have a chat to your pharmacist to make sure you're not taking a medication that's actually contributing to your fatigue.

If you're working, get connected to the MS Employment Support Service. There are loads of support to keep people working and looking at ways to manage their fatigue as part of that. If people are under 65 and have a NDIS plan, it can be really valuable to speak to your support coordinator. about the impact fatigue is having, just to see if there are other supports that might be available.

At the moment, we're currently running a fatigue management program called FACETS. It was developed in the UK at Bournemouth University, and unlike other programs we've run in the past, the key feature of this program is actually to get people to consider the thought patterns and their underlying core beliefs that might be contributing to their experience of fatigue. When we start drilling down, it can also be really challenging but also extremely helpful to become aware of our own self talk that contributes to our fatigue. Things like, “I have to cook dinner every night in order to be a good mum. I have to stay at work for an extra hour every day just to be seen to be committed, or I have to have a manicured lawn to show that I'm caring for my house.” These may sound silly but, scratch the surface and we've all got deep seated beliefs around what we have to do to be a good person, and it's often doing these things that keeps us fatigued. So, we really see that it's extremely challenging and it's a hard thing to get your head around what's going on.

Nicola: It is, and it's a really interesting program. I’ve been involved in this program with you, and I know it can be really challenging for some people, but like you, I've also seen those wonderful light bulb moments when someone realises they can make a change, or they can delegate, or they can take a rest or some of those beliefs they've had and it can make a huge difference. It's certainly a really effective program.

Andrea: It certainly is, and it's all about getting people to reflect on why they can't say no. Why they keep their diaries so full. We all have a lot of self-talk that we really need to challenge and replace with a more positive language. It's okay to get help from your partner with the washing. It is okay for the kids to help with the household chores. It's actually great for them to learn and be more independent. It's also okay to pay a gardener, all sorts of fresh looks on things that we've been living with for a long time.

Nicola: I think I get around that a little bit, Andrea, by describing myself as domestically challenged and it gives me a great out.

So how can people tap into this training?

Andrea: Yes, well, all our occupational therapists are able to assist in fatigue management, whether or not they're part of the FACETS program. So, OTs are a great resource for fatigue management, and we run the FACETS program during the year, about four times, but there's always greater demand than what we can manage, and to be honest, it really doesn't suit everyone. The developers have actually put the program online as a kind of self-learning program. Naturally, that's not going to be quite the same as having the support and encouragement of a group working through it together, but it's another option. So, the best idea really would be to call MS Connect and speak to one of the MS Connect specialists, or even to one of the MS Advisors.

Listeners can also go to our website ms.org.au where they can find out more about upcoming programs or they can make that call to MS Connect.

Nicola: And any other resources that you'd recommend?

Andrea: Our own website that one ms.org.au has some wonderful information on symptom management, and we have webinar recordings in the webinar library, and listeners can call MS Connect to get access to a range of e books that they can borrow as well. Connecting with others for ideas for managing fatigue or sharing apps that they've found useful can be really helpful too, and our peer support program connects people with trained peers who share similar experiences or with another group of people either by phone or in person when we're allowed to, so I'd encourage that too.

Nicola: Thank you, Andrea. I'm sure our listeners are feeling much more empowered now to manage their fatigue and a better understanding of their fatigue as well, and to know that they're not alone.

Andrea: That's great. Thanks, Nicola.

Nicola: For more information on anything we've covered today, please get in touch with MS Connect on free call 1800 042 138 or email [email protected], and don't forget to find the MS Podcasts on your favourite podcast player such as Apple, Google Play, Spotify, Overcast or you can access the podcast directly from our website ms.org.au.