EPISODE 16: Overcoming Fatigue in Autoimmunity

STACY: Welcome to Autoimmune Adventures. Today, we're diving deep into one of the most common and debilitating symptoms of autoimmune disease, fatigue. Whether you're struggling with chronic exhaustion or experiencing sudden energy crashes, you're not alone. In this episode, we'll explore the causes, impacts, and strategies for managing autoimmune fatigue.

Join us as we navigate this challenging aspect of living with our diseases. But first, our Good Bit Minute. Ever heard of the chocolate revolution? Apparently scientists in Switzerland figured out how to turn the whole cocoa bean pod into a sugary syrup. That's right, no more throwing away the good stuff.

Not only is it reducing waste and helping farmers, but it also means that we can have chocolate without all of the added sugar. Talk about a win win. It might be a bit pricier right now, because of those pesky sugar subsidies, but hey, it's worth it for a guilt free chocolate fix. Chocolate is my favorite means of reducing fatigue.

ALYSIA: I love it. So, the prevalence of fatigue and autoimmune disease is very widely experienced. I think that's pretty good. probably the most common symptom experienced by individuals that have autoimmune disease. I know that was absolutely my first symptom that I noticed. Um, because after I would have my kids, I would usually rebound within a few weeks time.

And then after my fourth pregnancy, I didn't rebound. I was so tired all the time. And that was when really my symptoms set in. Fatigue was definitely the hallmark of, of autoimmune disease in my case. But studies have shown that a significant majority of people with autoimmune conditions report experiencing fatigue very regularly. It's just a part of their life. And the severity of that fatigue can vary greatly among those individuals. It can fluctuate over time. There were random days, and there still are random days, where I have no fatigue. And I feel like I'm invincible, and I want to try and do all the things.

And we know that that's not going to end well, but so I don't want to sound, I don't want it to sound hopeless, but, um, chances are extremely high that if you have autoimmune disease, you're going to be fighting with fatigue, um, pretty regularly. So we're going to talk about how that impacts our lives and how we, how we try to work through it.

BECKY: So all of us that have autoimmune diseases have probably seen just what kind of an impact the chronic fatigue has on us. It can significantly interfere with even some of the smallest daily activities, making it difficult to work, socialize, and maintain a normal routine. I think a lot of us that work full-time jobs or sometimes even part-time jobs, we feel like that's sometimes all you can give in a day, and you're exhausted when you come home, and it's hard to have something left for yourself and your family. Um, fatigue can lead to feelings of isolation, frustration, and depression.

I know recently I've had some friends that have wanted to go out and do some activities. I have lupus. That's a little challenging. And fortunately I have enough of a, a group of people with my sisters and other people that I don't feel completely isolated, but it does feel frustrating and sad when things that I used to love to do are things that I just am too tired to do.

And so we need to recognize that, and like Alysia said, when we're having a good day, try to do some of those things, try to have fun, but not overdo it because then you're going to be paying for it the next day. The impact of fatigue on relationships, productivity, and overall quality of life can be substantial.

ALYSIA: If you haven't realized this yet, you need to understand that the impact of your fatigue because of autoimmune disease it's probably going to be the hardest thing for your loved ones to deal with. At least that is the case for me. It's probably the hardest thing, symptom I deal with, I think for myself personally, but it's the one that impacts my family the most. And that's hard to see.

STACY: It's really affected every element of my life. I've, I've learned that I have to really gauge where I'm at. And there is an analogy out there that helps us to gauge where we're at. It's called the spoon analogy. And it is credited to Christine Miserandino. And I hope I said that correctly.

It's used to describe the limited energy available to individuals with chronic illness. The story goes that she was sitting at lunch with a friend and a friend asked her what it was like to have an autoimmune disease. She gathered up all the spoons in the area that she could. And she said, you know, some days I have this much energy.

And she said, but it takes a spoon to take a shower and it takes a spoon to get breakfast ready and she kind of uses this analogy to explain that we have a limited amount of energy. That is given to us and some days we have more spoons and other days we don't have enough spoons, and because we have a finite a number of spoons to use throughout the day, our energy levels fluctuate on the daily and autoimmune people have fewer spoons than a healthy individual does.

So, if you're healthy, you're going to have more spoons. And if you're autoimmune challenged, then you're going to have less, and we will have a link to the spoon theory on the blog because we want to give credit to Christine for her, um, wonderful and wonderful way for people to begin to understand what it's like to have autoimmunity, but because we don't want to steal her intellectual property, we'll give her credit. And then what we're going to do is use our power bar analogy to kind of signify that same concept. Okay, that we determine how much energy we have based upon what our power bar is giving us for the day.

ALYSIA: Yeah, so you guys might remember in our first episode, we talk a little bit about our power bar analogy, and that we use the concept of that to illustrate fluctuating nature of our energy levels. And just as Stacy said, it's very similar to the spoon analogy. We're just using our own spin on that. So it's, it's imagine that you're playing a video game. You have your little power bar or your life bar. Some days it's going to be full and you're going to be able to bust out so many things. You're just going to have tasks that you can check off your list, check off your list.

And then other days your power bar might be a little low and. You when you are paying attention to your body, and you recognize that, that is going to require you to conserve your energy and to prioritize your activities more carefully, right? We've and we've talked about that before. We'll jump into that a little bit more as we talk about fatigue.

So, the key really here is to listen to your body. Um, we're going to say that so often you're going to get sick of us saying it because we're going to say it so often. It's important to learn to listen to your body. Your body will give you signs to let you know where your power bar is at, and then you need to adjust your activities accordingly to that.

BECKY: And one of the ways you're going to need to listen to your body is you need to differentiate between what's normal tiredness and autoimmune fatigue. And for me, one of the ways that I do that normal tiredness is if I feel genuinely tired, like I can go lay on a bed and go to sleep. Sometimes with autoimmune fatigue, sometimes you would lay on a bed and go to sleep, but sometimes you could lay on a bed just because you feel so exhausted, you physically can't do anything, and it's not like you're going to fall asleep. You just don't have the energy and the wherewithal to do the things that you need to do. So, um, autoimmune fatigue often feels different from tiredness experienced after a long day. or a lack of sleep, it's described as a deep bone weary exhaustion that doesn't seem to lift even with rest, and that I feel like is a pretty good description.

When you have that, especially if you have it to the point that you're in a flare, you can get a good night's sleep and that will definitely still help you, but you still feel tired in the morning when you have that fatigue, and it can make it difficult to perform even simple tasks like getting out of bed, taking a shower, or concentrating on work.

STACY: We also have to ask ourselves how long has this been lasting because you can be tired and then you get a good night's sleep and you feel fine again. But if you have autoimmune fatigue, it's something that can last for extended periods of time, even if you're giving yourself that adequate rest.

So, when I say adequate rest, I'm talking seven to eight hours a night. But when I'm in a full on lupus flare, I might need 10 or even 12 hours. And even when I wake up from sleeping for 10 or 12 hours, I can still be tired. So, if I look at like the duration, I'm looking at the fact that this is lasting over a period of time. It's persistent. It's not giving me any space. It's not a temporary thing. It's kind of continuous days, weeks, sometimes even months. And it's resistant to rest, meaning that even when I do rest, it doesn't go away. Our resistance to rest is existing because of our autoimmunity. So let's talk for a few moments about what causes actual autoimmune fatigue.

There are a couple of things that are pretty obvious: impaired immunity. Whether you have autoimmunity or not, anytime you get sick, anytime you're ill, you have that impaired immunity and that, of course, is going to cause exhaustion. When your body feels like crap, it feels tired. That's really how simple it is.

And then if you're not getting good sleep, regardless of whether you have autoimmune disease or not, bad sleep equates to fatigue. We all know that. That's a given. So those are the two things that are really obvious. But there are things that affect autoimmune people specifically. For instance, inflammation.

Our chronic inflammation can contribute to fatigue because it depletes our energy and it affects various bodily functions. And if we're in a flare, we are inflamed and inflammation is going to equate to severe fatigue. That just is part and parcel of how that works.

BECKY: Another big one that impacts people that have autoimmune diseases is hormone imbalances, because a lot of autoimmune diseases affect hormone production, which can lead to fatigue and other symptoms. Hashimoto's is a really great example of this.

ALYSIA: Yep, for sure. I know that, uh, you might not even think about that. Hormonal imbalances being something you need to check, but for sure, look into that. Another one is going to be nutrient deficiencies. People with autoimmune disease often have nutrient deficiencies, and that is complicated even more because oftentimes we also have, um, intolerances to many different kinds of foods, so it can be extra difficult to get the nutrients from our food if we have to avoid certain foods. So when you're thinking about, I mean, that leads us into a conversation about nutrition, because that is one of the strategies for managing fatigue. Shocker. It's one of our Big Six guys - a healthy diet. That's going to have a huge impact on your energy levels on and managing your fatigue. So we've talked about this before, and we're going to talk about it again and again, and again, an anti-inflammatory diet has so many benefits, not only for your, uh, for helping your autoimmune symptoms, but specifically for helping fatigue.

Um, if, when you have cut out those processed foods, you are going to notice. I have never talked to a single person who has gone clean eating, like we're talking Whole 30 or Paleo, or, or just like really clean eating. And they haven't had a huge boost of energy. Have you guys ever talked to somebody who hasn't had that?

BECKY: No.

ALYSIA: That is a huge. Like gold star for nutrition. In my opinion, it's a huge gold star for a healthy diet. So it is, it is important though, to identify what your food sensitivities are, and especially if you have more severe allergies, um, obviously those that are, um, celiac need to be avoiding gluten completely, and anybody with autoimmune disease should be really considering eliminating gluten as we've discussed, but identify your food sensitivities, and then start planning an anti inflammatory diet around that.

Another potential cause of fatigue is going to be nutrient deficiencies. It's pretty common with autoimmune conditions to have certain nutrient deficiencies, and they can often lead to fatigue. Those are things that you're really going to have a hard time figuring out unless you can get a doctor to order some tests, um, and figure out what those nutrient deficiencies are.

But in the meantime, something you can do to work on that is going, uh, without going to the doctor is just focus on getting a really nutrient rich diet. Um, an anti-inflammatory diet that is going to be super helpful when you're eating anti-inflammatory foods that helps curb your inflammation, which is causing your fatigue, right?

So, and we've talked about the benefits of an anti inflammatory diet before. Um, And how important it is, we've talked about identifying your food sensitivities and eliminating those things from your diet. That's, it's not easy guys. It's just not an easy thing to do, but it, it's a reason it's our, one of our Big Six, like it is such an important staple.

In improving your quality of life and nutrient dense foods are going to help you because they will not only support your immune function, but they will give you energy. It's so important to make sure you are getting good protein. Omega 3 fatty acids. I think everybody knows the foods we should be avoiding and the foods we should be incorporating into our diet. That's going to have an impact on managing your fatigue for sure.

BECKY: And I think that another one, it's another one of our Big Six. And like we said, you're going to hear us talk about them all the time, but regular gentle exercise. If you're already fatigued, you don't want to go out and, you know, do CrossFit or run a marathon or triathlon, whatever. I mean, if you're up for that, awesome. But in most cases, the exhaustion, you're not going to be up for that. So pick some lower impact things that you can do regularly, and find suitable exercise routines based on your individual abilities and your, um, your energy levels. If you're not sure of where to start for a gentle exercise options for yourself, consider going to a physical therapist or doing rehabilitation. Sometimes they can give you ideas that you had not considered before.

STACY: We've already talked a little bit about how it's important to prioritize sleep and it is one of our Big Six, because it is so important to reduce the fatigue, but you just need to remember that it's important for your overall well being. That's a given. But that means you have to create a sleep conducive environment. And if you go back to our episode on sleep, you're going to see that we talk about having a good pillow, a good mattress, making sure you've got the kind of sheets that make you so that you don't overheat if you're one of those people that's prone to that. Having an eye mask is helpful. Having earplugs are helpful. Um, some of these things you have to get used to. If you need a CPAP machine, you need to do the footwork to get a CPAP, and create that sleep conducive environment that allows you to get the rest you need. And if you've got sleep disturbances, like a dog that's ramming its head into your back all the time, you need to consider having said dog not sleep in that, on the bed with you.

And I know that's hard because I love taking a nap with my dogs, but I do not let them on my bed at night when I'm asleep at night. I have them crated, because if I tried to sleep with my dogs at night, I would get no sleep. So you've got to have good sleep hygiene practices, have a routine that gets you into that Zen happy space at night and then manage your stress, so that sleep can be a priority and a joy in your life.

ALYSIA: Another way we can manage our fatigue is by conserving our energy. back to our little analogy of the power bar. Um, you need to pay close attention to your power bar, which means you need to be paying close attention to your body. You need to pace your activities throughout the day, plan accordingly. If you wake up and you feel that you are in a flare, you might have to re evaluate how you're going to spend your day.

You might have to change some plans and that's, you've got to be willing to do that. Um, so you can avoid that overexertion and the burnout. And I know this is hard. This is a personal problem for me. I, if I wake up feeling good, you can bet I'm going to go full bore into that day, and I'm going to try and get so much done, and I'm going to be, try, try to be, you know, so efficient and I am notorious for overworking myself when I wake up feeling good.

So even if you wake up feeling good. I'm not saying don't try to tackle the day - absolutely try to tackle the day, but pay very close attention as you do so that you're not overexerting yourself. You need to schedule in little rest breaks, even if you don't feel like you need them, that's going to help you feel better.

Um, I'm a big fan of naps. If you, if you are blessed enough in your life to take naps, do so and do so without guilt. Um, And then, like we've talked about before, um, when it comes to stress management, um, you need to be willing to designate, um, and delegate, excuse me, tasks to other people in your home, in your family, in your work. Don't be afraid to ask for help. That's going to help you conserve your energy as well.

BECKY: A couple of other good time management techniques include prioritizing your tasks, identifying what's essential versus what's non essential, and deciding how much of your power bar that's going to take and if it's worth it. Um, because sometimes you're going to find some of those things that are not as essential, that aren't as we referred to before, your big rocks. Um, You're just not going to want to waste the time on your power bar because you're going to want to save it for other things.

One of the ways you can also do this is time blocking which is allocating specific time slots for different activities I know when I used to work in the office, I had a manager who was really big on this and he actually announced to us, he said, "I know, especially in today's world, that everybody's all about having immediate email responses." He said, "Just so you guys know, I have a two hour time block, you know, at such and such time during the day. And that's when I check my email." And he said, "and I don't check it the rest of the day, because all it does is interrupt me when I'm supposed to be doing other things."

And I, I know that doesn't always work for everybody, but I actually saw, he encouraged us to try the time blocking method. And I actually found I was a lot more efficient and was able to get things done with less energy.

STACY: Even though I have to use my phone for my job, I time block my phone. So I'm only allowed to look at my phone once every two hours for 15 minutes at the end of that two hours. And that's how I get work done. I wouldn't, I wouldn't otherwise.

One of the other things that I do is what's called the Pomodoro Technique. And this means that you work in, this says 25 minute intervals, but what I'm going to tell you is this. I work in 15 minute intervals, because with my autoimmunity, I don't always have 25 minutes worth of energy. So, I will set a timer for 15 minutes, and during that 15 minutes, I stay on the task that I have set for myself. So I'll go into the kitchen, and I'll say, okay, I have to make lunch, but before I make lunch, I'm going to make the kitchen look nice. Set the timer for 15 minutes. I work for 15 minutes. When I'm done, I reward myself by making a delicious lunch and eating it.

And that's what I do. And then the other thing that I like to do is make sure that I'm limiting my distractions and getting rid of the things that are distracting me. So I minimize my interruptions, and I create that focus work environment and everything we're talking about here kind of all comes down to saying, "You have to control what you're doing and how you're doing it so that you can reserve your energy for the things that really matter."

ALYSIA: I think it's a matter of discipline, right? Self discipline for sure, because I like the, the. What you were talking about with your phone, because that's my biggest distraction is my phone. Um, but I, you know, I have not implemented some of these techniques and I think I probably should, I really like them.

Um, but obviously another one is just learn to say, "no," it's hard. I really hate disappointing people, but I have gotten better at better and advocating for myself by setting boundaries and avoiding overcommitting myself, and that requires the willingness to say no to things. Sometimes things that are good and worthy you still have to say no to because you just don't have the power bar to dedicate to them.

Um, and then I would say, like, breaking down those big tasks that you have. Sometimes it could be really overwhelming when you are fatigued and you have something significant that needs to get done. Um, and I would say use the time blocking and the Pomodoro strategy and the prioritizing use all of those strategies to take that large task and break it down into smaller, more manageable steps to get it done, uh, because overwhelm is going to be your best friend if you don't do that.

Um, and then, although I said phones can be our biggest distraction, I do think they can be a huge benefit, a huge blessing to us when we are trying to manage our time and thereby manager energy. Um, so you, there's a lot of apps out there that are really great for productivity and things to stay organized.

There are little things that give you a little reminders. I have an app on my phone that gives me a reminder to drink enough water and stay hydrated, um, which also will have an impact on your, on your energy. And so use your phone and use technology for good. Not for ill in this case, it's really easy when you're tired to just sit down on the couch and, and we call it "doom scrolling," and just doom scroll because you're exhausted, and you don't have the energy to do things. But really that doesn't help. It actually can make the fatigue worse.

STACY: A couple of really quick things that are specific to autoimmunity. If you get to a point where your fatigue is so severe that it is debilitating, you need to consider getting medical intervention. Okay. If it's, if it's affecting your ability to live life, you need to go and get a consult with a healthcare provider. And especially if it's getting worse, if it's, if it's staying at a steady pace, you might be in a flare, but if you're getting like a severity of worsening fatigue, you need to have a doctor check you out.

BECKY: Other times you want to probably get some medical intervention is if you're, if you're finding you're implementing a lot of self care strategies, like we've talked about here today, and you're still not getting any relief from the fatigue, that it's just not going away. Um, if you have other significant changes in your health and your overall health and well being, um, that can obviously impact your fatigue, but you definitely, if you have any of those things, you would want to get medical intervention as well.

ALYSIA: I know that caffeine in large quantities is extremely bad for us. Um, but I would be lying if I said, I don't use that to manage my fatigue. What I do have in my purse at all times is a little bottle of caffeine pills, because guys, some days every strategy I implement isn't enough, and I really have to have a little bit boost of energy or at least a boost of alertness so that I can, can be paying attention to something.

I was sitting in a six-hour meeting the other day for my job, bored to tears and. I had to take a caffeine pill. There was no other way I was going to stay awake. So, I don't want to, I don't want to say I'm supportive of caffeine usage, but I'm not against it. I use it judiciously. I think it's not something I'm popping every day. It's not something I am, you know, depending on at all times. So we don't want to be depending on caffeine, but kind of wrapping up, um, our discussion on fatigue. It's going to be one of the harder things that you deal with, with autoimmunity. And it's important that you try to find joy and purpose despite the fatigue you're feeling.

And I think that ways to do that are going to be setting realistic goals, goals, give you a purpose. They give you something to work toward. Um, and, and hopefully. a motivation, um, to work through your fatigue. I think it's important to celebrate the small victories. And sometimes the small victory is getting showered for the day.

Um, other days, that small victory is going to be, um, having made yourself a healthy meal. Um, those, those are victories guys, and we can't discount them because We all know, um, that there are days when getting showered and eating a healthy meal is a monumental task for your body. Um, so I say small victories, but on days like that, they feel like big victories to me personally.

Um, it's important that you build your support system and that you rely on your support system. As we mentioned earlier, fatigue is going to be the thing, the symptom probably that affects your loved ones most. Um, So you need to make sure that they understand. What you're dealing with, you need to, you need to try to explain it to them so that they understand so that you don't get accused of being lazy, you know? So, because there are days when, um, it's going to be really difficult on them and you've got to recognize that. And there are things that you can do to make it easier on them. Um, like all the things we've been mentioning, but recognize that this is a very real impact on them. And, um, and try not to let the guilt get to you because if you're a mom and you have young kids and you have no energy to do things with them, um, it can be really depressing. It can be really hard on your mental health. Um, and your mom guilt can be very, very real. And that's not just the case for children. That's the case for spouses and friends. Um, as was mentioned earlier, it's hard to be able or it's hard to say no to things that you want to do that you just don't have the power bar for, and, um, try to explain in the best way possible. Try to explain to your loved ones, your friends and your family and your support system and, um, help them understand.

In the end, fatigue really does feel like a downer guys, but is it really bad that we have to stop and take a beat and look around and check our surroundings and our environment and our body?

Um, fatigue is just a way your body is trying to communicate with you. And I know it's hard to work through, but we can do hard things, guys. There are going to be days where you don't really have the choice to cut out things that are going to demand power from your power bar. There are going to be days where you have to power through and you're going to be looking for those little energy stores. Um, and if you can't find them, you're going to have to just trudge through that day, slog through that day. It's hard, but you can do it. We all have to do it and you can, and you're probably going to be better for it. So go have a nap if that's what you need today.

We hope you join us next week. And in the meantime, feel free to visit us on our website, leave us comments. We love to hear from you guys. You can find us on Facebook, Instagram and Patreon. We look forward to hearing from you.

Remember you are worthy of joy. Your disease does not define your life. You do.

HELPFUL LINKS:

Chocolate/Cocoa Bean Story:

https://www.wired.com/story/chocolate-has-a-sustainability-problem-science-thinks-its-found-the-answer/

Christine Miserandino - Spoon Theory:

https://butyoudontlooksick.com/about/christine-miserandino/