MS and fatigue: Why do my batteries always need to be recharged? (Episode 1)

I’m Dr. Susan Payrovi. I’m a physician practicing integrative and functional medicine at Stanford University. I also live with MS as a patient, so I’ve had the clinical experience and the personal experience of working with MS every single day. I’m joined here by my friend, Dr. Mirla Avila.

Mirla Avila, MD: Thank you, Susan. It’s a pleasure for me to be here. I’m Mirla Avila, a neurologist and a specialist here at Texas Tech Neurology. I’m also the director of the Comprehensive Care MS Center, and as a treating physician for MS, we want to start talking today about fatigue, which is a very common symptom of MS. Actually, more than 80% of patients complain of fatigue.

Something important to know is that this is a different fatigue than the one we may have if we’re just tired. It is something that we call “central fatigue,” and one of the hypotheses of why this occurs is because, as you know, MS — as the name says, multiple sclerosis, or multiple scars — patients may have scars in the brain. That makes your brain have to use different pathways to be able to accomplish tasks that may be simple for somebody who does not have MS.

It is pretty common for patients to feel very tired. Not being able to think clearly or experiencing mental fogginess can also be part of that. Some may experience heat exhaustion, or when there are very cold temperatures, to have worsening symptoms and fatigue. And we’re going to talk about what are the different mechanisms that patients can address to try to compensate for this, and we’ll also be listening to some patients sharing giving their hacks in approaching fatigue when they’re living with MS.

Susan Payrovi, MD: As two doctors and a patient, we want you to know that there’s actually hope. Fatigue tends to be one of the most problematic symptoms of MS, and I tell my patients, it’s not okay to just accept it. Let’s work on addressing the various factors that can help improve it. I think we can make progress, and this is one of the biggest topics that comes up for both of us all the time.

Fatigue can be described in so many different ways. Some people describe it as feeling tired or sleepy, or just feeling weak even. It can affect you at different times of the day. Oftentimes, I have patients tell me that they just hit a wall in the afternoon. While there isn’t just one way to describe fatigue, there are some commonalities.

One other thing to understand about it is that fatigue rarely just shows up by itself. It’s usually accompanied by other things that are also troubling, like brain fog or changes in cognitive abilities. It could be changes in mood — you might feel more anxious, or your mood might be coming down and feeling more depressed. Sleep can be disrupted. So it’s sort of this state where a lot of things are just off, and you just don’t feel good.

I would also say that in my personal experience, there are definitely things we can do to give a boost of energy. We’ll be going into that in a second, but Dr. Mirla, what do you recommend to your patients? What are your clinical experiences with this?

Mirla Avila, MD: One of the ways I approach fatigue is trying to understand first if there’s something else making the fatigue worse. For example, if a patient isn’t sleeping well because they’re waking too much at night to urinate or if they have restless leg syndrome. Sometimes, correcting sleep and sleep hygiene can help with the fatigue, but sometimes it doesn’t. Even if they have a good night’s rest, they may wake up and still feel fatigued.

So I want to ask if there is something different now. Is there maybe a UTI going on or another infection making symptoms worse? And if that’s not the case, then there are medications we can use. Some of the medications that we use are stimulants that can help with that mental fogginess and fatigue. Not everyone is a candidate for that because, well, one of the side effects could be heart palpitations and even provoke AFib, which can be dangerous.

I want to say that medication isn’t for everybody, and they’re not perfect. Some patients may notice, oh, you know, this medication really helps, but it doesn’t help everybody, and some may have only a little bit of a benefit but not a complete benefit. So another way to approach it would be by trying to understand what’s behind it and how you can optimize the amount of energy that you have during the day in a smart way.

For example, if you are going to have a late evening event and you know that you have to go grocery shopping, maybe try to park closer and not be walking in the hot sun — don’t exhaust yourself before the event. Maybe plan ahead — resting before and after activities can help you use your energy when you need it most.

Susan Payrovi, MD: I think what you just said is really key. Because one thing we notice when we start recognizing fatigue is that we don’t have infinite energy — we have to budget our energy. So maybe that means you only do one major thing a day.

Or if you have a busier day planned, I really like what you said about planning ahead, resting before the activity, and also resting after the activity. That can be really helpful because it helps you allocate your energy for the things that really matter to you, rather than just expending energy all day long, and then maybe by mid-afternoon, you’re done.

Mirla Avila, MD: Right. I think it’s also very important to know what works for you as a patient. And actually, by the way, we’re going to have a link to our fatigue tracker because it may be different from your friend that also has MS.

For you, exercising actually helps and gives you a little boost of energy, but for others, maybe if you overdo it, that makes you more fatigued. Everybody is different, so I think it’s very important for you to see what works best for you, to try to identify your triggers, and to find ways to compensate and have more energy throughout the day.

Susan Payrovi, MD: And to your point about exercise, I think we have to be a little bit careful when we talk about exercise with patients who experience fatigue. Studies show that those who maintain some level of physical activity end up having less fatigue overall.

I know it sounds really hard to tell someone who’s fatigued to go exercise, but just recognize that even exercising in a way that’s very simple and basic can still be really helpful. That’s why we included that in our fatigue tracker. So just keep that in the back of your mind.

And then sleep is another big one, isn’t it, Dr. Mirla?

Mirla Avila, MD: Yes, for sure. Sleep disturbances are common in MS. They can be caused by restless leg syndrome or frequent urination, so there are many reasons why somebody can have sleep difficulties. Sometimes it can be spasms that you’re having throughout the night because of spinal cord lesions that lead to spasms or neuropathic pain.

So trying to find the root cause for why somebody’s not sleeping can be important. But I would also like to talk a little bit about how food can be a source of energy.

Susan Payrovi, MD: And if we think about food, we know a lot that our gut bacteria are very important in our immune system, but they are also important in how we metabolize different types of foods. Some patients have noticed, and research has shown, that if you’re trying to stick to a more plant-based diet or adding more vegetables to your food, trying to think about foods that are easily assimilated by your GI — like natural grains and vegetables that are high in fiber — those are good ways to culture good bacteria. You also have less fatigue and feel more energetic throughout the day because the digestive system is not taking too much energy to digest the foods.

I usually tell my patients to think about the way we used to eat back in the day before our foods were processed. That is the way we want to eat. We don’t want to have a lot of chemicals in our food that our body does not know how to assimilate.

Susan Payrovi, MD: And I think people get stuck on this idea like, “What’s the perfect diet? If I have MS and fatigue; what is it that I need to be eating?” I want to simplify that for people. What you said is exactly right. If you can increase the plants in your diet — not just fruits and vegetables but also nuts, seeds, beans, legumes, herbs, spices, and whole grains — you start really flooding the body with lots of vitamins, minerals, and phytonutrients. These are the awesome, colorful molecules that you see widely in plant-based foods that actually are anti-inflammatory and antioxidants. Increasing those foods in our diet definitely helps.

And here’s something else you could try: just cutting down on sugar, which I think of as sort of “junk energy.” You might eat sugar, your brain feels happier, you feel good for a little bit, your energy is up, but then there’s always a crash afterward.

Mirla Avila, MD: It’s fake happiness, isn’t it?

Susan Payrovi, MD: Yeah, totally. And it’s so easy to get hooked on. I mean, I’m not going to lie — if I wasn’t very mindful of it, I would eat sugar all the time. It’s just so, um, uh, like, sort of, uh, just helpful to the brain to feel happy right away. It’s like a quick fix.

But what’s happening is your energy system is sort of yo-yoing. Your blood sugars are fluctuating, hormones are fluctuating, and you’re just stressing your systems at that cellular level. So one thing I try to always tell my patients is, if you can’t take out the bad — like you can’t take out the sugar — at least put in the good, which can help counteract some of the bad effects of something like sugar or processed foods.

Mirla Avila, MD: I like that approach. AI remember reading this very interesting book in which instead of limiting things that you are already eating that you feel you enjoy that may not be healthy for you, as Susan was saying, start adding things in that are healthy, and little by little, start adding it more and more, and you may already be eating 80% of your foods being healthy and just having much less of that being something that is unhealthy, so as Susan was saying, instead of taking away, start adding and your body is going to start telling you what fits better for it and continue eating that way and remember that it’s not the same for everybody. You may see that for you maybe sugar is something that is not beneficial and is a trigger; for another person, maybe realize that if I exercise, I feel much better. So that’s why I feel the tracker could be helpful, and we would love to know if it is something helpful for you all.

Susan Payrovi, MD: Yeah, I’m really excited about the tracker because not only will it help you start seeing patterns, but it’s something you can actually take to your doctor and say, “Is this normal? What else could I be doing? Are there treatments out there that I could potentially benefit from?”

So much of living well with MS has to do with finding our own patterns and our own solutions to our problems. Another area we discuss on the tracker is stress management. Whether you’re stressed to the max or having a relatively easy day, how does that affect your energy levels? Even just simple things like taking a 10-minute break around noon, doing a breathing exercise, or taking time for a hobby or prayer — whatever it is you like to do — all of these things can be really helpful in lowering stress.

One thing I like to tell my patients is that when you have a lot of stress, your body actually sucks up more nutrients to rise to the challenge posed by that stress. So now you’re stressing your body in other ways by maybe not having enough nutrients to do other important things. This is why I think it’s crucial to address stress in any way that works for you.

And just starting somewhere really small — I mean, I can’t think of making it smaller than one minute a day. I just tell them, “Wake up, set your alarm one minute earlier every day. Get up, sit up, breathe for a minute, and then you’re done.” Then maybe in a few weeks, you go up to two minutes. But just keep it really simple. It’s more about building muscle, the habit of just sitting down to breathe and being intentional about building more resilience to stress.

Mirla Avila, MD: I find meditation very useful, and I know that, as a culture, we don’t grow up meditating very often. But there are a lot of guided meditations — even free guided meditations on YouTube — that you can find. Once you start building that into practice, it becomes easier.

And I think this is useful for everybody. Whether you have MS or not, stress is always there. We know that stress can be very harmful to your body. As Susan was saying, it worsens symptoms and sometimes even triggers relapses. It’s very important. There was a study that showed meditation can increase your levels of endorphins and help maintain a more balanced immune system.

Susan Payrovi, MD: And there are studies that show that you don’t have to be a great meditator to get those benefits. Even novice meditators who sit down and have only done it one other time before — just the act of sitting and connecting with yourself — getting grounded actually changes the profile of hormones, neurotransmitters, and cytokines, which are the communication molecules of the immune system. It changes those towards a more anti-inflammatory set of molecules floating around in you.

This really speaks to the idea that our bodies are dynamic, and if we can create a better environment, lots of things start improving at the cellular level. And for me, as a patient, that really helps me make different decisions throughout my day.

Like, am I going to eat this processed thing, or will I choose a piece of fruit instead? Just these little micro-decisions we have to make over the course of a day. Am I going to stay up and scroll through Instagram, or am I going to put on my sleep podcast and go to sleep? It’s just about, little by little over time, making good decisions over time that will make you closer.

Mirla Avila, MD: And I think it’s important to know as a patient that having fatigue with MS is not your fault. It’s part of MS. It doesn’t mean that your medication isn’t working. It’s just, unfortunately, a common symptom of MS.

It actually used to be a way they diagnosed MS in the 1800s before we had MRIs. They would put patients in a hot bathtub, and if they experienced extreme fatigue or worsening symptoms, that was MS.

But what I think is important for patients and caregivers to understand is that it is real. If someone with MS is feeling fatigued, it’s not that they’re being lazy. Many patients voice concerns that their partners or employers don’t understand. People say things like, “Oh, you’re always tired.” But it is not the same as the fatigue of someone who didn’t sleep well or is just being lazy.
So first of all, it’s not your fault. It doesn’t mean you’re being lazy. It’s part of the disease. Educating others to understand fatigue is important.

Susan Payrovi, MD: Yeah, unfortunately, it’s an invisible symptom, and there are a lot of misconceptions and misunderstandings. It’s one of the biggest frustrations for people — you can’t really show them that something is not right, but it’s getting in the way of you living the life you had envisioned.

Even though we may not be able to completely erase fatigue — I don’t know how to cure fatigue — I think we can make a lot of progress in healing our bodies and getting through our day better, with less symptoms, less fatigue, and more ability to engage in work, school, or just finding joy in the things that make us happy.

I encourage everyone to download the fatigue tracker. I think you’ll really enjoy it. It’s a good place to start being more intentional about your health.

Mirla Avila, MD: And also, we have some patients that were wanting to talk and let you guys know what helps them to cope with their fatigue.

Susan Payrovi, MD: Yeah. And I’m really excited, actually, to share these videos with you all because these are real-life people living with MS, showing us their life hacks.

And by the way, please, throughout this series, we’re going to be taking questions and comments from the audience. So if anything’s coming up for you, just send us a quick note, and we’d love to address it.

All right. Shall we start with our first person, Amy?

Amy: Hi there. My name is Amy Behymer, and I’m here to share one of my favorite habits for busting fatigue. And that habit is to do pushups.

Now, you may be thinking, “But I can’t do a pushup. A pushup takes too much energy.” I’m talking about any pushup that you can do. My favorite are counter pushups. So usually, at some point in the day, there’s a counter, there’s a table, something close to me where I can take 30 seconds and remind myself — show myself — that I am strong and that I can move my body, work my muscles.

That also happens to be one of the things that actually helps my body feel less fatigued.

Now, there are times — some days it’s a wall pushup. Sometimes it’s a pushup on my knees. Maybe even sometimes, I can squeak out a pushup on my toes. But it’s not really about the pushup. It’s about the pride of following through on a habit to do something physical with my body when my brain is telling me that I’m too tired to do anything.

And I like to be able to show it, love it, and nourish it by giving it some of that movement — some of those feel-good chemicals that come when we move our body.

Mirla Avila, MD: I love that. What do you think about this, Susan? Have you ever heard this from a patient or something similar?

Susan Payrovi, MD: I think so, and I love that. It’s so simple. It’s like my one minute of meditation in the morning — like one pushup. Because, you know, every time you squeeze a muscle, you are releasing good hormones that help your mood and increase your energy.

So I love how simple this is. And maybe for someone who isn’t able to do a pushup — maybe your arms have a limited range of motion — what if you did a squat or something else that felt like a good squeeze of a part of your body?

What do you think?

Mirla Avila, MD: I think so. Maybe even a good stretch — a good stretch or something that you are doing a physical activity. It doesn’t have to be a pushup.

So whatever feels comfortable for you. I think that’s a great hack.

Susan Payrovi, MD: Yeah. And also, for people with very limited mobility, what if someone actually passively moved your muscles for you and helped you do a squeeze of maybe your leg by, you know, helping you kind of bring your knee up closer to your chest?

Like, I don’t know — you would have to get creative — but I love any movement that people can incorporate. I think that’s a really helpful hack.

Mirla Avila, MD: I agree.

Susan Payrovi, MD: Yeah. Let’s listen to Ben now, who’s got a really interesting hack as well.

Ben: Hi, Drs. Payrovi and Avila. My name is Ben, and this is my life hack for multiple sclerosis fatigue.

Progressive MS has left me with a lot of deficiencies, but it’s while I’m in the throes of fatigue that I feel the most disabled — feeling trapped inside a body that’s not responding the right way or trying to think through the jello of fog can make me very anxious and depressed. Fortunately, that’s exactly what I’ve been working on with a mental health therapist.

We practice a lot of mindfulness, and what I’ve found is fatigue can be the perfect time to practice mindfulness. Doing a complete body scan can erase so much of the anxiety and depression.

Is it perfect? No. Does it erase my fatigue? No. Does it make me feel better?

Yes, it does.

And that’s my life hack.

Mirla Avila, MD: I personally love this one, Susan, because what Ben is doing — he’s using something that, for him, is debilitating in that moment of fatigue, but he’s empowering it with something that he can do at that moment, which is kind of meditating or doing a body scan.

So, in the end, he’s turning something negative into something completely positive and doing something about it. And I think this is a great hack.

What do you think?

Susan Payrovi, MD: Yeah, I love his insight into sort of what the bigger picture of this is. And, you know, instead of just giving up and giving in to the fatigue.

And I love what he said. Was it “the jello of brain fog?” Like, what beautiful words he used. You totally understand what that feels like after he describes it that way.

But it really shows you that, you know, he’s found some skills that are working for him. So it’s not about erasing the fatigue — it’s about developing skills, tips, and tricks to just manage it.

All right, so our final life hack comes from Greg.

Greg: Afternoon, Dr. Avila and Dr. Payrovi. I just want to share some information around my life hacks for dealing with fatigue.

My first name is Greg. My last name is Soren. And I’ve had progressive MS for the last 22 years — really progressive for about the last 18 months to two years.

For me, in my early years, I was doing a lot of traveling, so I didn’t have that regular routine. But nowadays, I really try to start my, you know, my day with meditation, eating healthy meals, and taking a daily afternoon 30-minute nap.

Of course, I take my medications daily.

And, you know, one of the things I’ve learned is when the fatigue comes on, don’t fight it. Just work through it the best you can. Because we’re always just doing the best we can.

Thanks.

Susan Payrovi, MD: What a great way to do the thing that feels really counterintuitive. Rather than fighting it, you just sink into it and let it be what it is. Then, you just keep on adding in your good habits and the things that you know help you.

Mirla Avila, MD: And it seems that Greg is combining meditation, food, and a little bit of exercise. And I think that’s what it’s about.

So you have to try and see what works for you and maybe combine different ones that work for you. Again, that’s why I feel the tracker can be useful, but also listening to your body, understanding your body, and seeing what are the best tricks that you have — and sharing those with others, including us.

Susan Payrovi, MD: Yeah. We’d love for you to tell us what’s working for you. It actually helps us become better doctors as we hear about all these cool ways of managing something really challenging.

And one thing I also was just thinking about, based on what you just said,
Mirla, is that, you know, people combine different tips and tricks, and the reason that helps is because these things start synergizing together — where one plus one is now five.

So, the more little things you can pull in — like you get an extra 30 minutes of sleep at night, you do that one pushup, or you do your little walking program. You eat a few more plants and maybe one less sugary drink during the day.

That adds up to a lot. Think forward — like in six months — that’s actually going to be really impactful.

So it works. It works every time.

Mirla Avila, MD: Yeah. You’re going to be slowly picking up good habits. But I would say don’t get frustrated. You don’t have to do everything in one single shot.

Take your time, little by little, and feel proud of any little change that is positive that you make.

Susan Payrovi, MD: I think that’s really great advice and perhaps a good place for us to sign off.

We hope that you enjoyed the show. Please write to us — we’re really curious about what you’re thinking and how you’re managing your symptoms.

We look forward to seeing you next time.