Multiple Sclerosis: Feeling Drained. Fatigue & Sleep Challenges

Episode 8: Multiple Sclerosis: Feeling Drained. Fatigue & Sleep Challenges [00:00:00] Kathy Chester: I'm talking, not just like, I need to take. You know, sit for a spell. I'm talking like somebody came and shot me with a tranquilizer gun and I didn't see them, but that's what happened. It's a fatigue that takes over and, and changes your day. Introduction [00:00:17] Meghan Beier, PhD: Welcome to the Find Empathy Podcast, where we discuss the interaction between health and emotions. My name is Dr. Meghan Beier, and I'm a clinical psychologist with training in Health Psychology, Rehabilitation Psychology, and Neuropsychology. In this first series, we're going to focus on a population that I work with very closely, individuals and families living with multiple sclerosis. Introduction [00:00:49] Meghan Beier, PhD: Fatigue is one of the most disabling symptoms of multiple sclerosis and occurs in approximately 80% of people with this condition. In an article that was published in the Journal of Neurological Sciences in 2021 it was found that fatigue was the number one factor influencing self-reported ability to work. Worse fatigue was significantly associated with high chances of missing work, low work productivity, and decreasing ability to work. When combined with depression, there was a higher likelihood of people reducing their work hours or not working at all. And when combined with anxiety, fatigue was associated with many more challenges at work. While, fatigue can develop directly from multiple sclerosis. It can also be caused by or exacerbated by many other factors, including things like vitamin deficiencies, depression, physical exertion. And this is when we think about things like brushing your teeth or showering, which require more physical effort due to having a disability. Another huge contributor to MS related fatigue is poor sleep. Although fatigue and sleep are related and can exacerbate one another. They can also be separate. And sleep disorders are extremely common in people with multiple sclerosis. It can be caused by MS symptoms like bladder urgency in the night, restless legs, chronic pain, or temperature dysregulation. But other conditions like sleep apnea are also more common. In the following interviews you're going to hear from two psychologists. The first is Anna Kratz. She's a research psychologist at University of Michigan, and she talks about new ways to assess fatigue as well as ways to treat or mitigate its effects. You're also going to hear from Dr. Abbey Hughes from Johns Hopkins. Who will discuss the different types of sleep disorders that are seen in people with multiple sclerosis, as well as a current study that she's running to help improve sleep. But first we're going to hear from Kathy Chester, she's the host of the Move it or Lose it Podcast. And she's also the owner of Disrupt Fitness Gym. She lives with both multiple sclerosis and rheumatoid arthritis and has lived with those for over 20 years. In this podcast she is going to share about living with both of those conditions, as well as some helpful tips with managing fatigue, especially for those who want to keep active and exercise regularly. Kathy Chester [00:03:19] Meghan Beier, PhD: Kathy. Thank you so much for being here. I just wondered if you could share a little bit about yourself and your journey with MS. [00:03:28] Kathy Chester: Sure. My name is Kathy Chester. I live in Michigan, born and raised here. Looking back, well, I'll say this. I feel that, pre-diagnosis I feel like I can see now, MS symptoms and signs all the way back to high school. Actually I can see cognitive issues where they thought it was, ADD and things like that. And I thought, I don't think I just got an onslaught of ADD in my junior year that doesn't really make sense. Things like that. And even. But just cognitive things that, I would go to take a task and, and I was thinking subjects that I just, I loved and I take a test and it just, it wasn't there. I was, I had studied, studied, and I knew things. I was helping the, my other friends. Like, no, you thought this. And then all of a sudden I would take the test and it'd be like searching for these answers. And, um, So then fast forward and you're doing like college stuff, and then you're doing like, getting certified and then I'm doing stuff to, to become a trainer and I'm like studying and studying. And I'm just like, what is happening with what is going on with me? And so those were like some of my first symptoms before diagnosis that I just didn't understand. You know, why I was having so much trouble, With small things like, you know, I'm fast forwarding now to when my kids were little. So I still wasn't diagnosed. My, my older ones, I was helping with their homework and it was like, all of a sudden addition was [00:05:00] gone. I went to like a simple multiplication with my oldest and it was not there. And I'm like, and so, you know, everyone around you is trying because no one knows you can't see IMS. So, and for me, for sure, it wasn't visible and they're all, like, you're just tired. You've got a lot going on and I'm like, okay, sounds good. And I was ignoring some signs. Like I remember shaving in the bathroom and, like parts of my legs were numb. And as I was shaving up, I would notice like, oh, that's not too, that's not, that's weird. And. Then I noticed like my feet were numb. Wasn't going to say anything to anyone, because that would mean I'd have to go to the doctors and I didn't ever have to go to the doctor's for anything. Except for one thing I'll get back to in a minute. I would say what brought me to my first diagnosis before MS, was rheumatoid. And that was my mother-in-law at the time, worked for a rheumatologist. And she just really felt that my symptoms, um, mimicked a lot of, of rheumatoid symptoms, which indeed I did have rheumatoid. Now the multiples sclerosis, didn't get. Caught, but it wasn't very long after that I started having some signs and really the first, the big sign was I woke up on mother's day and lost the vision in my right eye. And still none of us knew what that was. I didn't really say anything until later that day I just kept scratching it. You think there's something in it. You're trying to find, you know, what this gray thing is, that's, you're looking at it and trying to see, you know, what is in my eye. And so later that day, I remember just saying like, I haven't been able to see out of the side since morning. So the next day I made an appointment with an ophthalmologist and, you know, I thought anything from maybe a torn retina, fortunately, you know, I I've now know that it's very common that ophthalmologist will be the one to diagnose you. This ophthalmologist had to be the kindest man I'd ever met, and he knew right away. And I felt like he was like in my house. Cause after he done the done the exam and saw the optic neuritis, he came in the room, he had a daughter my age. So I was in my late twenties, like mid to late twenties. And he came into the room and just sat down and was visibly like choked up. And I was like, this isn't good. Like, why is he choked up? And he said, I'm I called my friend, he's a neurologist at Beaumont. And I was like, did he die? Like, what's the matter? Like, how can I, how can I help you? And, he's, I'm going to send you there. And I was like, why? He then said, I believe that you have multiple sclerosis. And he said, he had already asked me, so I have to back up. He had already asked me about, do I have, do I have any numb spots? And I was like, he's in my house. He has cameras in my house. He's like, know, do you have, is there anything else that you're not telling me that wouldn't have something to do with your eyes, but something, you know, your hands, your feet. Um, and so I was like, Yeah. And I hadn't sold any, I haven't told anybody that, so that fast forward went to the hospital. They did, they didn't do a, Um, they didn't do a, a lumbar spine. They didn't do that. They didn't do a spinal tap. They just did an MRI and found that I had several lesions. So it had already been, going through my body for a long time. So, um, so I had to then autoimmune diseases that didn't really go together, rheumatoid and MS. Those weren't common autoimmune diseases that went together. So that began my journey. [00:08:44] Meghan Beier, PhD: oh yeah. I, I mean, that's a lot, that's a lot all at once, but I imagine getting diagnosed with both of those. I could bring up a lot of emotions. I mean, what were you feeling when you got those diagnoses? [00:08:56] Kathy Chester: The rheumatoid didn't shake me up as much because I thought, you know, I'll deal with that later. It wasn't, it just, I didn't understand it. And it wasn't. I didn't feel like I didn't feel like it was something I needed to really deal with right then. The MS diagnosis, that that was the one that I was like, what is this? And now my aunt had MS. I didn't get to spend a ton of time with her during the years that she was alive. She lived in Canada and I remember hearing like my family say this, it took a year for her to get an MRI back then. And then there was no medication. She was a smoker. She ended up passing away from complications, but really it was cancer. And so. I do remember a lot of her symptoms were very similar to mine. She had, I have a lot of, um, left side issues. Her paralysis or left side I've just notice was on her right eye. Mine is not in [00:10:00] the right eye. So learning about so many of the, of symptoms being so similar. but how did I feel? I felt like grieving, but also like, it was surreal. Like there, they wasn't possible, like, what is this? And they were wrong. And so I continued to try to run it out and go to the track and just go beat it. Go to the gym and just work it out and think I was just going to beat the crap out of it and, and get rid of it. And so that's how I tackled it. And, um, I just, I just didn't didn't really believe it. I was like, no. And I remember getting the two VHS tapes of Copaxone at that time. And my choices were Avonex and Copaxone, and they showed, they showed this older couple walking strolling and, this older woman on a bicycle. And I was like hell no. And I just remember throwing the tapes and saying, Nope, not me. This is not in my life. And so I don't think I could grieve it because I didn't accept it for awhile. Um, I did start on the Avonex. So was back when the needles were super, you know, were very large. And so I had bruise, bruise, bruise, bruise. So that didn't keep me from relapsing. So it was, it was very quick that I understood that this was going to be, it was, I called it the uninvited guest that wouldn't leave. and that's what it always felt like. That's what I always, when I, when into later years fast forwarding and did a lot of, of talking to other patients and then went on to go to different speaking engagements, I would always say, I think it's just this uninvited guest that just won't leave your home. And I'm kind of like that old movie. What About Bob? And he's just never going to leave. And so, you know, kind of coming to terms with this and figuring out how the Avonex, by then they were already doing the studies of Tysabri. And so I missed that study, but I was able to get on it right, right away. And that, that did my whole body changed after Tysabri I was able to do things pretty much as normal as, as everybody else. I felt good, strong. It was, it was great. I felt pretty normal. I mean, given, you know, your normal fit, the fatigue, the other stuff. Yes. I had MS. No, it wasn't. It was my new, normal is my new MS normal. [00:12:42] Meghan Beier, PhD: Right, right. I love that you call it the uninvited guest. From a mental health perspective, there's this therapy called Acceptance and Commitment Therapy, and there's a bunch of metaphors in that type of therapy. And one of them is this image of an uninvited guest who's sitting in your house and you can either fight with that guest to try and get them out. Or you can kind of just live your life, even though they're sitting on the couch, you'd rather them not be there, but you can go about your life without fighting them. So I, I just love that you had that, that metaphor in your mind. [00:13:16] Kathy Chester: thank you. [00:13:17] Meghan Beier, PhD: How long have you been living with MS? [00:13:20] Kathy Chester: It's been now it's funny. Now that I go on different programs, I'm like 20, 22 21. So it's over 20 years. [00:13:28] Meghan Beier, PhD: Oh, wow. Okay. This particular episode that I asked you to be a part of is looking at the things that drain your energy. Right. Um, so like fatigue and sleep. We know that fatigue is kind of one of the most common symptoms of multiple sclerosis and has such a huge impact. And so I wondered if you could share, if you experience fatigue and if you do, what does that show up? What is that like for you? [00:13:54] Kathy Chester: So I would say fatigue is a daily battle for all of us. Most of us that battle multiple sclerosis. And I would say it depends on each day. Each day is different. I could have one day that I'm extremely fatigued and I couldn't tell you why or what it is. It could be the weather. It could be, I could think back to the day before and try to repeat it and say, I did the exact same thing. I ate the exact same foods. So why am I so fatigued today? And wasn't yesterday? So there are a lot of times there isn't a rhyme or reason, and sometimes there is sometimes you can look at the day before and say, you know what? I really didn't have enough water. I didn't, I didn't take the supplements I was supposed to take. So sometimes that does play a part, but fatigue is definitely, um, is so draining. It can, it, it affects us in so many ways that, I think we don't always get until we get it until it's too late. Sometimes it plays a part in things that we want to do. I think fatigue. Plays a part in obviously our [00:15:00] family, if we're, um, parents, if we're married, plays a part, sometimes I think if we're still working, they get the best of us. And then fatigue takes over and our family gets the, I call it the leftover in our, in our, in our bag and our sandwich in our lunch bag, they get the leftover crumbs. So what's left. [00:15:19] Meghan Beier, PhD: Many times the people that I've talked to have felt dismissed around fatigue, either they talked to their doctor and their doctor doesn't really have an answer for them. you know, those kinds of things. So I just wondered if you had ever had that experience. [00:15:33] Kathy Chester: Oh, for sure. Especially in the early years, um, a lot of it was giving you things like Adderall and things that would, you know, pick up your energy and things like that. And that was the big one. And, and other people in your, in your orb, in your world, just assuming they understood the fatigue where they would say, oh, I get you. I get you. I'm fatigued. And it was like, no, I'm talking, not just like, I need to take. You know, sit for a spell. I'm talking like somebody came and shot me with a tranquilizer gun and I didn't see them, but that's what happened. And so it's, it's that fatigue, it's a different, whole different fatigue than the normal, you know, I'm going to, I'm going to take a 10, 15 minute cat nap and then I'm going to be okay. It's a fatigue that takes over and, and changes your day. [00:16:22] Meghan Beier, PhD: Right, right. So it's not, it's not like that. I've had a long day at work and I feel a little bit tired and that everybody experiences it's much stronger. It's much more impactful than that. [00:16:32] Kathy Chester: for sure. Definitely. [00:16:35] Meghan Beier, PhD: I've also heard individuals described different kinds of fatigue, like cognitive fatigue or emotional fatigue or body fatigue. And sometimes you can have one of them. Sometimes you can have all of them. Is that true for you too? Do you have different [00:16:49] Kathy Chester: yeah. Actually I wrote some of that down because I said, um, so physically I think it's that we overdue, you know, I think that when I overdo things, I physically, obviously I'm, I'm too fatigued. So if I'm for me in my business, if I'm training a lot of MS clients and then I'm training some of my healthy clients, And I'm doing workouts with them. And then maybe I want to get a workout in later. And I don't realize I've done way too much. And at the same time I'm working in my business and I'm doing mentally things, then I'm just fatigued physically. Completely and I've over done it. And then that, that interrupts my sleep. And so I would say physically it's and thinking back, even I know my kids are older, but being a younger mom, we always overdue. I think it has a lot to do with the guilt of having multiple sclerosis. We wanted to make sure our kids have as normal of a life as possible. So we want to get to every sporting event. I remember hightailing it to every event, never coaching things that I should never have been coaching. You know, just doing things that, that anything I could do to make their lives as normal as possible, and really not taking care of my own body and feeling this constant fatigue. But wanting to hide it from everybody else. So they didn't know that I was as, as exhausted as I was. So physically, I would say that. Cognitive, I think it all goes together. Obviously. I think it's so exhausting and we lose things so often. So it's this constant, you know, where did I put it? Where'd I set it, where'd it go? And so you're walking around your house. Walking around your workplace, where is it, or you're scooting around. Where did I put it? Um, you get to the grocery store. If you didn't have a list, you're like, I have no idea why I'm here. I don't know what, um, I needed. So it's the back and forth of things. It's not remembering, heaven forbid you didn't put things in a calendar and that stuff makes you exhausted. And I would say the shiny thing syndrome. For me, it's like, we're always trying to organize ourselves with MS and so it's, it's something that I th I see an app that would help me organize and I'm like, oh, it looks good. I'm gonna get it. So as soon I've got 40 apps. Then now I'm completely unorganized. And, and now I'm cognitively going nuts because I've got now I've got all these passwords. So I would say, find one thing for me it's google. And it's, it's really learning that system and not going off to different things that look shiny and really, you know, having that person in your life too. Like for me, it's my husband, that'll say. Hold off, like, do you need this app or do you want to just continue in, in Google and just continue putting your stuff in there? So I would say cognitively it's it's really, and knowing yourself, writing it down and knowing what is taxing you cognitively, what is making it so [00:20:00] that you're not able to think clearly. And, and you're not. And you know that, you know that you're, you're not finding the words and that you're not participating in a conversation because cognitively you don't feel like you have anything to say because it's not there. And so I think that that, that has helped me through the years, sit back and say, um, okay, what, what is what in my life is taking up the space? And I can look back to having a full-blown gym and trying to run that and going through times that weren't, you know, I hired people that could do things that I wasn't good at. I'm not good anymore at sending emails and things like that. Cognitive. So, you know, you keep people for a little bit, then they leave and then you're trying to make up for that stuff. So cognitively it would be very stressful and cause a lot of fatigue trying to train new trainers constantly and hold the clients, promotions, things like that. So I think we often get fatigued when we and with the cognitive stuff, because we try to take too many things on. And also, I wonder you'd probably be better at answering this. Depending, I think on, on where our, um, where our lesions are. I think depends a lot on that. If they're, you know, in the front on or whatever area there they are, I think depends a lot on that. I would say the last emotional, I would say, I feel like that can be fatiguing. When we isolate ourselves, We often do that when we feel that all of the things together, where we're, where we're cognitively, not all there, where we're fearful of things, we're fearful that we might've fallen. We feel like we're not ourselves. We're going through about a depression and we start isolating. And I think that that on, I that's. That, that, that. kind of anxiety brings out a lot of, fatigue. And I think we spent a lot of time focusing on the, what ifs and, and that is, is extremely fatiguing. So I think if we can get out of the what ifs and, and again, I think it, it keeps us awake. [00:22:19] Meghan Beier, PhD: I think you've described all of those really beautifully. And in many ways it echo is a lot of what I've heard from other individuals that I work with. I had kind of two follow up questions. One was, just about your gym and your exercise routine, because I know previously in the MS world, People were told not to exercise, to kind of go home and rest and we now know that's absolutely wrong. Um, and I know that you've stayed active. How do you think that that's had either a positive or negative or maybe both impact on fatigue? [00:22:55] Kathy Chester: Oh, gosh, I think that exercise for me and nutrition has had such a positive effect. And it's so funny because intuitively I knew when I was diagnosed, even when it wasn't talked about that none of this makes. Eating, whatever I want and not exercising doesn't make any sense because my muscles would atrophy. And so I had a, that trend and it's actually in a blog that I have coming up, a veteran MS warrior, who said to me, do something you've not done before. Do you know, do an exercise that you can't compare it to and, and start movement. And I listened, I started first with water aerobics to keep my core temperature down. And then I got poking my eyes in the gym and saying, I'm going to get in there. And so I think, you know, just doing those, but it kept me from depression. It kept me from too much fatigue. Which sounds funny because you think like, if I exercise, I'll get, I'll get exhausted, but that's absolutely the opposite. You actually have more energy and you have, more energy. You're not as depressed. You have more to look forward to. I see a lot of my clients, more and more excited each time I see them. And, so again, it's in my blog. I did a, I did a 5k and I had to hobble, but I could just see each of their faces as I did that. [00:24:14] Meghan Beier, PhD: Oh, that's great. You know, you mentioned, keeping your core body temperature down and, can you say a little bit more about that? We know that heat or cold intolerance can exacerbate MS symptoms, especially, things like fatigue. And so can you say more about that. [00:24:30] Kathy Chester: Definitely. So I would, I would say even again, just intuitively as a, as a younger MS patient, I realized, okay, I'm I want to be at the beach with my kids. So what can I do? So I would bring things before they had like the cool towels and that came out with all these new things that I love. I would take, you know, really cold. I would take an ice bucket and I would just keep wrapping myself in cold cool towels and, and constantly take dips in [00:25:00] the water. Keep my feet in things like that. So for exercise, I always tell him my MS clients, before we do the program, are you in a cool place? If they're in a, in a warm area. So I might be zooming with a client That's in California, it's super warm and they always want to tell me and like, okay, I am Michigan, it's freezing. So if they're in a warm climate, I want to say to them before we begin, make sure you've got a window open. Make sure you've got a fan on. Make sure it's not too warm so that you're not feeling more fatigued because of the temperature. Cause we know how that affects us. And so I always want to make sure that whether they have something cooling around their neck, that they've got the things that they need. I say for the other way. So if it's too cold, I would say, make sure that you've got a small heater on. And for some of the clients that even need, like gloves on, make sure that you've got like gripping gloves so that when we do the bands and the things like that, you, you can grip. And so that helps a lot. So just really being aware of their, of their surroundings and knowing how that affects their movement. [00:26:07] Meghan Beier, PhD: What do you think has been the biggest challenge for you in managing fatigue? [00:26:13] Kathy Chester: I would say knowing my limits. Learning that through the years, so learning, what helps me sleep. Learning to get to bed earlier. Learning how to bring a scenario of, do not disturb was the best thing that ever happened to phone. So learning as you know, my gym that I own. Early on learning to put that on my phone. So I wasn't getting phone calls from clients that 11 o'clock at night. So learning to put that on early and then, you know, putting it aside and then being able to kind of bring a routine to my body, whether it's. Bringing tea at night and then slowing down and putting devices away. And sometimes I'll notice that I get into a program and I'm watching it. It's too late. And so I even set an alarm for my phone to say, like time to shut it off. And so that it shuts off. And then I can listen to an audio book or something like that, but that all the other stimulations are done. [00:27:14] Meghan Beier, PhD: So I'm glad that you brought up sleep because that's the other piece of this episode that I think is so important. Sometimes they're connected fatigue and sleep issues, and sometimes they're not right. So some people can have no sleep issues and have really bad fatigue and sometimes sleep issues can exacerbate fatigue. Can you share, have you had any sleep issues? [00:27:37] Kathy Chester: Always from the beginning, I've had sleep issues. So, I mean, early on, I mean, I, it was back when doctors were handing out Ambien like candy. So I remember being on 20 milligrams of Ambien and, and then, I mean, stories, crazy stories of, I went to talk about with my son and the lady acted like we were best friends and realizing I was driving on Ambien in the middle of the night to get Taco Bell. So, you know, crazy stories from back then, and then learning how to wean myself into different ways that I could, I could take things to to fall asleep. And so I have learned some THC, some cannabis, some things like that. I don't smoke anything like that because. Why add more issues with why? Why would I do that? I've never smoked cigarettes, so it doesn't make sense to me to smoke marijuana. I do more oils, things like that that help relax my body and help me fall asleep. Nothing that makes me feel loopy in the morning. So I think that's really a research thing that you have to do. There's a lot of different things out there that are for sleep that are not for that are not as stimulant. I think we have to be very careful with those things that you're not putting too much THC in with the cannabis oil and the oils that you're taking. So I think it's up to you to do that research. And I think if you're willing to do that, it is that it is a lot of research. So that's helped me through the years, especially with the spasticity that I struggled with a lot. And I know a lot of our MS patients really struggle with that in there in the night of their sleep. You know, once the spasticity starts and the bathroom trips, then it's kind of this ongoing cycle, Right, Of we then we're awake and then something triggers in our mind and it's like this worry thing. And then the stress, and then, then it just keeps us up. [00:29:33] Meghan Beier, PhD: A lot of the things that I hear, people have trouble falling asleep because their mind is so active. Like you mentioned getting up at night to pee, you know, if people have like bladder spasticity or other things and even like restless legs. So it sounds like many of those things were common for you. [00:29:49] Kathy Chester: Yeah. for sure. Definitely. And I would say, one of the biggest things I've learned to do is two things. One, I would say meditate. So start [00:30:00] breathing in the middle of the night. Find a good meditation. There's so many now my gosh, if COVID gave us anything. A million more as shiny things, but meditation. Right. So I would say start that. And if you're still lying in bed for 20 minutes and you're not sleeping, get up. Get up. You know, listen to something outside of your room and then allow your body to get tired. Maybe walk a little bit around or, or scoot a little bit, whatever it is that your range of motion is, and then let your body get sleepy again. Cause I think the frustration and where the worry me. Uh, very Italian. So my word, I think I'm a, I'm a, I'm just a professional worrier. I think it's, it just allows us to get that out because when we lie in bed and we're, we then become so frustrated that we're not sleeping, that begins a crazy cycle as I call it. So I think just getting out of bed and just kind of starting to breathe and, you know, just, okay. I might not, I might not have slept tonight. And then getting that anxiety out that if I didn't sleep well tonight, I know for sure my body's going to put me to sleep the next night because my body will eventually fall asleep. [00:31:12] Meghan Beier, PhD: So you kind of put that, worry to the side by noticing kind of calming yourself down those thoughts, right. That "this is terrible" kind of thoughts too. You know, I'm going to be tired tomorrow, but at least I'll fall asleep. That kind of thing. I love that. That's great. So, you know, are there other suggestions you've brought up a lot. But so if you've already gone through all of your suggestions, but are there other suggestions that you found have really helped you? Get a good, good night's rest? [00:31:40] Kathy Chester: I would say, you know, if someone, if my husband offers for a massage, a back, back rub take them up on it. If you've got someone that offers that and feel free, I mean, give yourself, like a lot of times I'll, I'll go through a stretching series. Well, I'll do my own stretching that I send to my clients. And I'll send them a stretching series that they, that they can do. And I'll do stretching at night. That'll just calm my body down. So I'll start from when I'm lying in bed from my feet and moving all the way out from my shins, to my knees, to my legs, all of it, to my head and neck. And that'll really get me in a place where I'm then feeling ready that I can, my body's feeling more restful. [00:32:23] Meghan Beier, PhD: Great. [00:32:23] Kathy Chester: That's one thing that helps too. [00:32:26] Meghan Beier, PhD: Now I know you know, one of the things I wanted you to share is just how people can follow you because you have a lot going on. Right. Um, you have a podcast, you have a blog. You also train people virtually. So would you mind sharing kind of, if people want to [00:32:41] Kathy Chester: So my training program, I just launched a bout a month ago and it's the acronym is dammit. So it's DMAT. So it's, it is disrupt, move and transform. And so that's been something that I've been very excited about and have been working with a lot of clients, you know, here and, and honestly, 2020 and COVID was, you know, obviously it was, it was horrible for so many reasons. And some of the positive things were meaning being able to connect with you, being able to connect with so many doctors and neurologist and so many of the MS community really connected and, and just beyond. And it just really gave us an opportunity to do that. And so, with that, it was, it was just so great to be able to connect and really use this platform that I've been doing so often here, but really kind of change my, my big gym to actually do something that I really love. And that's been so rewarding. So now I've trained people, either in the studio or in their home if they're near here or on, or on zoom, which works wonderfully. And and so that program has started off. And so I do that now, so people can get ahold of me at www.MoveItOrLoseItP odcast.com. So that is the website. They can get ahold of me on the email, [email protected]. They can get ahold of me @KathyChester1991 on Twitter. And, um, obviously the podcast is Move It Or Lose it is that's the name of the podcast. And that always comes out with a new you've been on my podcast and on enjoyed you. And you'll also be joining me. We do something called Wine Down Wednesdays. Once a month, we have women come on and talk about female issues that we have in the MS world in the, and really just the autoimmune world. And so, um, Meghan will be joining us on this, on the 23rd of March, and we'll be discussing some of the women's issues. So that's something that, um, that I do. And I do a live, uh, at time where I do a session where anyone can join. And so just something to give back to the [00:35:00] community. [00:35:00] Meghan Beier, PhD: Wonderful. Thank you so much. I think you're doing amazing work and I hope more people start to follow you and connect with the work that you're doing. Um, one final point. Is there any other advice that I haven't asked you about for mental health providers who are working with people that have MS, any advice that you think would be really important for them to know? [00:35:22] Kathy Chester: Well, Meghan, first off I am so, so honored and I'm just so overwhelmed with what you've put out because I, my hope and prayer is that more mental health providers will look into your program and will look into what you are providing, because I think so often, you know, we don't, we're unaware. I mean, my goodness I've had it for so long and I was completely unaware that this existed. And I think often we go into a counselor's office and they tell us things and it doesn't make sense to us because they don't understand what we have. And so I would say, um, really, if you have the opportunity, learn as much as you can about what makes us anxious. What makes us fatigued. Why, what is different for us than for the normal people? What is it about us biologically about the MRIs, about where the lesions are that caused things that. That makes us depressed or make us have different issues and help us to deal with those things as they come on and work through those. So those would be some big things that I would, that I would say. And with the early diagnosis that our younger people being diagnosed, connecting them, helping them see, you know, the ones that have been like me that have been diagnosed and many others for over 20 years that this isn't the end. But that helped me a lot when, um, my doctor would show me different patients that have, that were running marathons and doing things that, that I didn't feel so bleak about that I could see there, there was a future for me. [00:37:01] Meghan Beier, PhD: Great advice. Thank you again for being on the podcast. And I look forward to talking to you in the future. [00:37:08] Kathy Chester: Thank you. Meghan. For all you do. We appreciate you. [00:37:11] Meghan Beier, PhD (2): Next we hear from Dr. Anna Kratz, a psychologist from University of Michigan. She shares research and practical tools for managing fatigue. Remember, if you would like continuing education credits for listening to this episode, please go to FindEmpathy.com backslash Learn. Anna Kratz [00:37:28] Anna Kratz, PhD: So my name is Anna Kratz. I'm an Associate Professor in the Department of Physical Medicine and Rehabilitation at the University of Michigan. I am a clinical psychologist who, mainly in the past, I've studied pain. But somewhere along the line, very much realized that pain and fatigue go hand in hand in MS and other conditions. And so just got really interested in fatigue and started to realize that actually was a little less studied in some conditions. So, you know, started doing a lot of research in fatigue. What I'm doing right now in terms of Fatigue and MS. Some of the work I'm doing is trying to improve how we measure fatigue by developing measures of what we call fatigability. And just quickly, that's the concept of how quickly or easily do you fatigue when you try something, when you try to do work or activity. You know, a lot of our measures of fatigue don't ask about how much you're actually trying to do. So it doesn't, you know, if, if, if you give a measure of, you know, fatigue, average fatigue over the last week on a scale of zero to 10, but you don't ask how much the person is active. Um, it doesn't really give a good a good metric of how much of a problem fatigue is in a person's life. So we're trying to improve the measures of fatigue. The other thing we're trying to do is figure out how best to help people manage their fatigue. For example, we have one large trial going on where we're testing the effects of a popular medication called Modafinil versus cognitive behavioral therapy or CBT for fatigue. And then some people are getting actually both medication and the CBT. So we're trying to test, you know, can some people do well on one of the monotherapies either the medication or CBT? And are there some people that need both? So those are just a couple of the studies that we have going that are focused on fatigue and MS. [00:39:35] Meghan Beier, PhD: I want to ask you more about CBT for fatigue, but before I do that, can you tell me a little bit about how you think about fatigue and MS? Because it's a little bit different from being tired or not sleeping well. Many times people with MS say no, it's, it's not just being tired, it's more than that. So how do you think of or define fatigue? [00:39:58] Anna Kratz, PhD: Yeah, I mean, it's really a [00:40:00] tricky thing to define because I think it's such an individual thing for most people with MS. People with MS, from one person to the next, it might feel somewhat different, but you're right. It is quite different I would say, especially from sleepiness. That sort of sleepy feeling. Oftentimes fatigue in MS has different components. So there might be like a physical component, a fatigue or exhaustion, a lack of energy or strength in the body. Similarly there's also oftentimes mental or cognitive or brain fatigue, right? Just not much energy to think, or having to experience as sort of a slow or foggy thinking. It's hard to tell, is it cognitive functioning or is it like this mental fatigue? And then I've heard people even explaining that they feel kind of emotionally fatigued, which has been described as just sort of an emptiness or an apathy or not having much energy too to give a darn anymore. I think a lot of that just comes from having MS on top of just having the normal stresses and worries that come with living in today's world. So it's very complex. A lot of times it's also complicated by weakness, muscle weakness that people with MS often have. People have a hard time describing their fatigue, because it's very often intertwined with this weakness and this muscle weakness. Am I feeling fatigued or is my body just slowing down like a windup toy? That needs to be wound some more. And for everybody it's different. It's one of the ways that that's fatigue is really challenging to treat because it is so individual. And some people have that like muscle fatigue and some people not so much. So some people it's just this really overwhelming sense of exhaustion like I can't pick myself up off the couch, you know, in a bed or yeah. If I take a shower, I need to take a nap afterwards, you know, that kind of thing. But yeah, it's, it's complicated for most people. It's multifaceted for most people. It's highly variable. So it might, you might feel, have good parts of the day and bad parts of the day. You might have good days and bad days. There may be times of the year where it's worse. Like some people find that their fatigue is a lot worse in the summer. And sometimes it's, it's worse when it's cold out. That's a very individual thing. It's a very complicated thing for most people, but it's rare to find somebody who doesn't struggle with some component of this, of this fatigue. [00:42:35] Meghan Beier, PhD: Sure. Yeah. And it is very complicated. And I, I imagine too, it's also figuring out what factors are exacerbating or making that fatigue worse for each person with MS. Like you said, if there's some people that have muscle weakness, figuring that out. If they're having sleep disorders or anything else. How do you think about evaluating fatigue to figure out what might be adding to it for the person in front of you? [00:43:04] Anna Kratz, PhD: Good question. One of the things that I think is really interesting in talking to people with MS fatigue, is that it can actually be fatiguing trying to figure this out. Right. It's like very often people are sort of just tracking. Okay. What did I do yesterday that made me feel so good? And why do I feel so bad today? What did I do differently? Trying to find the answer. And I think part of the mystery and part of the challenge is that. I think a lot of fatigue does have to do with how people are living. Like how busy they were, how they took care of themselves, or didn't take care of themselves. And then there's also a piece of the puzzle that doesn't have anything to do with things that people can track. And hopefully through research, we can find, we can fill in more of the pieces of that puzzle. But your question of how can how can we sort of assess. You know, for an individual? It's really challenging, especially in a clinical setting, because typically you don't see people every day where the fluctuations happen. Our hope is that we can develop systems and technologies that can actually track people day-to-day and give clinicians the data that would be helpful. I think right now asking people to keep a diary is a good start. Or to somehow if they wear a Fitbit to try to track things that way. And maybe just start with focusing on one thing at a time, especially if you can sort of cue in that somebody is having a lot of problems with sleep, you know, and see if you can just sort of track well, if we can kind of get a handle on sleep and make sleep a priority, can you start to see some consistent changes? More likely than not. You know, just making one change. Isn't going to have a huge impact. If it is really, really bad sleep, it might. But I think trying to track [00:45:00] fatigue and people's behaviors over time is really important. And to track it on a day-by-day basis, not monthly, weekly, but to really try to get a handle on how are people living? What sorts of things, whether it's diet, activity, stress social interactions different medications they're taking how those are affecting their fatigue. It's really important. I think it's, it can get complex, complex, fast. So I'm hoping that research and technology kind of developments can help clinicians in the future do a better job of tracking and understanding. [00:45:38] Meghan Beier, PhD: And it might seem pretty intuitive based on some of the things that you said that fatigue can impact, but from your perspective, why do you think fatigue is such an important symptom for us to study and figure out how to treat well? [00:45:52] Anna Kratz, PhD: Oh, that's there are so many reasons why it's important. Probably one of the most important reasons is that it's important to patients. Patients describe fatigue usually as one of their most disturbing or distressing or disruptive symptoms. So if you ask patients, well, what, what symptom, if you could change it, would you change? Usually it's fatigue. Sometimes it's something else, but if it's not their top, it's usually in their top three. Uh, the other reason that I think fatigue is really important to address is that it affects people's ability to kind of take care of themselves in other ways. So if you have a patient who is really fatigued, And you don't address that. Any other kind of behaviors that you're trying to affect might be compromised. So a fatigued patient, isn't going to show great uptake necessarily of exercise or diet changes. You know, people who are fatigued are often less likely to eat well and sleep well and exercise. Because they, they they're sort of reactive to the fatigue. And so I think getting a handle on fatigue can be kind of like a building block towards managing other symptoms and other problems for a patient. [00:47:09] Meghan Beier, PhD: You mentioned at the beginning that cognitive behavioral therapy could be helpful for fatigue. And, you know, I think most people on the surface might think that the fatigue would be a symptom that physicians treat. Tell me a little bit about why cognitive behavioral therapy is helpful for fatigue and what's the mental health provider's role in addressing fatigue. [00:47:29] Anna Kratz, PhD: Cognitive behavioral therapy for fatigue has an impact on fatigue in two main ways. The first way is teaching the patient with fatigue self-management skills basically. Um, it's partly tracking and understanding how emotions and behaviors impact fatigue and are impacted by fatigue. And then the other way, which I think we don't know much about is sort of a general therapeutic benefit, like having somebody who understands and who cares about your problem. Cause I think one of the problems with fatigue is that no, you said, well, that should be a problem that's treated by physicians. But honestly, I feel like a lot of times you'll get physicians who don't even ask about fatigue because they S they feel sort of ineffective, like physicians, like anybody. They don't want to be shown a nail that they don't have a hammer for. I think just even having somebody who, who recognizes that fatigue is important, and there are things that you can do. Um, so cognitive behavioral therapy is really beneficial for fatigue because it addresses a lot of the main causes of fatigue. We know fatigue is sort of a multifactorial problem, lots of different things contribute to it. Stress contributes to it. Depression. Sadness. Problems with activity. So we think of problems with activity as being both overactive. So overdoing it, having boom and bust days. And we think about it as also needing some balance and activity. So I guess that kind of gets the boom and bust, but wanting to have some level of activity, whether it's physical activity in your daily life. So that's just being more active, you know, in your, around your house or having more exercise as well as resting appropriately because people with MS do need to rest and do need to build a break. So we have stress, mood, physical activity, sleep. Social relationships are a big part of fatigue and having having meaning, having things to be excited about infusing some joy in your life. Socializing, having good relationships with family and friends. Can be a big part of managing fatigue in those ways, as well as building support and communicating effectively about fatigue, whether that's with family and friends or [00:50:00] with healthcare providers. Right. These are all things that can be addressed through CBT these and more. I really think the thing about CBT too, is that it's like we were talking about earlier. Fatigue is very individual and CBT can be tailored to the patient and what they're struggling with. So if you have a patient who's particularly struggling with sleep and social relationships, you can focus the CBT more in those areas than in others. [00:50:30] Meghan Beier, PhD: Does CBT decrease the amount of fatigue or are people just better able to manage it? [00:50:37] Anna Kratz, PhD: Right. So I, I think that CBT does both. It both decreases the severity of the fatigue and helps people live a fuller life and a better life, even with the fatigue that remains kind of making the most of their day, even if they need to rest, uh, or that sort of thing throughout the day. So I think it's really both. And the goal is both to give some relief and also to help people lead a fuller life. [00:51:02] Meghan Beier, PhD: You had mentioned exercise earlier that people are less likely to exercise if they feel fatigued. But you also did a study that looked at exercise for decreasing fatigue. So can you talk a little bit about that? [00:51:16] Anna Kratz, PhD: Yeah. So I participated with my colleague, Nora Fritz at Wayne State University. She's got a background in physical therapy and we did a telephone based intervention and compared it to an in gym interventions. We did a manualized intervention, which means every person gets the same thing. Just some of the people came into the gym and the other people got the, uh, the intervention over the phone and it was a very small study. So we couldn't look too carefully at how effective the intervention was. But what we did see is that you can get a telephone intervention and it will have about the same effect as if you go into the gym, which means that we might have that successful or effective intervention, even when it's delivered over the telephone. And, you know, actually, uh, other researchers have delivered exercise interventions over the telephone and found positive effects in bigger trials than what we did, which is exciting because we've done a little bit of research that shows, even without looking at exercise, which is expected to be a certain level of intensity, even with daily fluctuations in activity that if somebody has even just a little blip up from their average level of activity, that it has a positive effect on later fatigue. I think sometimes people get caught up and I need to exercise, but I would say if that sounds daunting, that there's evidence that just being less sedentary is a good first step. And I think we don't have a ton of research on that other than some of this observational research that shows that, you know, we can see that when people do a little bit more than usual, their fatigue feels a little better for them. [00:53:01] Meghan Beier, PhD: Oh, that's great. Yeah. There's a physical therapist that I know who talks about doing Exercise Bites where just like little small bursts of exercise, maybe a minute or two, just to get more active, but not necessarily sustaining that for 20 to 30 minutes. [00:53:15] Anna Kratz, PhD: Yeah. That old idea of you know, if, if you could, if you walk. Just parking your car a little farther out in the parking lot, rather than trying to find the closest spot, like small changes like that, I think is exactly what we're talking about. Small bites. [00:53:31] Meghan Beier, PhD: You also, along with some other research developed a a toolkit to help people manage, not just fatigue, but other symptoms. It's called my MS Toolkit. How does that relate to, fatigue? Is that something that community mental health providers can use or use with some of their patients. [00:53:50] Anna Kratz, PhD: Yeah, thanks for ringing up the toolkit. You're right. A few years ago we developed a web-based cognitive behavioral therapy intervention that is freely accessible to, to healthcare providers, to community health workers. And it's at www.MyMSToolkit.com. And, uh, it's an evidence-based intervention that can be used in a standalone. So you can just direct a patient to the intervention, or you could use it. If you understand you've gone through and looked at it yourself, you could help augment or supplement the content that's in there by helping them, the patient kind of walk through or problem solve or figure out what they should focus on. The intervention in My MS Toolkit is meant to address pain, depression, and fatigue in MS. Which we know that those are three of the most common, what we call unseen symptoms in MS. It's not like for balance or, um, mobility issues that are a little more obvious to the eye, but are often unseen and untreated or undertreated. And so fatigue is a big [00:55:00] part of that. In fact, we did a pilot trial in 20 people and almost every single person that enrolled in that study had fatigue; had significant fatigue. Uh, and we did see that a significant proportion of the people in the trial. Who just used the website on their own. They be, we, we gave them some surveys that assessed how bad their fatigue was. We said, go use the website for 12 weeks, come back. We're going to assess your fatigue and a significant proportion of people just by using the website by themselves did show significant declines in fatigue. Now, there were also a lot of people who didn't show any change. And so those people probably need a little bit of help, but there are some people, who would benefit from using it just on its own. So. That's very encouraging because here we have, you know, we don't have enough mental health care workers to go around and to meet everybody's needs. So this might mean that we could direct some people to a self guided intervention and save those resources, those precious healthcare resources for the people who need a little more help. [00:56:20] Meghan Beier, PhD: How much do you think fatigue plays a role in changes in employment? [00:56:25] Anna Kratz, PhD: Fatigue and changes in cognition are probably the two things that really affect employment, you know, changes in mobility or motor functioning are usually. A little easier to provide some compensatory strategy for, but see severe fatigue or changes in cognitive functioning are usually the things that I hear about affecting people's decision to work or not. Yeah. A lot of times, you'll see people try, especially with fit with cognitive functioning. If somebody has severe decline in cognitive functioning, that'll usually precipitate a complete withdrawal from work. But with fatigue a lot of times you see people try is going down to part-time, if they're able to. And sometimes that helps more often than not. You just see people leaving the workforce altogether, which is another reason why fatigue is so important to address, especially in the severe cases where people really have a hard time maintaining work. I've heard so many stories of people You know, really struggling with trying to find a way to stay at work. So many people taking naps out in their cars, so many people so that in and of itself just shows that even people who are staying in the workforce are really struggling and trying to find every little corner and coping skill that they can to stay, to keep their job, even though their fatigue is really bad. Yeah. If we, whatever we can do to help these folks, and frankly, at some times it's just normalizing naps. Like if you need a nap and you can get through your Workday and you know, still function and that's working for you a lot of times, what we might focus on in a CBT intervention. Is all the guilt people feel about having to take naps or all that kind of self-talk about how this isn't, how it should be. But taking a nap is a perfectly acceptable [00:58:37] Meghan Beier, PhD: Or even those labels that people I've heard people say, Oh, I'm lazy. If I take a nap, [00:58:42] Anna Kratz, PhD: right? Yes, we have. In our culture, we have a ton of guilt about about napping and that it's laziness. You know, I wish we had that culture that like valued a siesta, because I think that's what people are taking, you know? And it's just a shame that anybody would feel stressed or guilt about napping when it's really when used in the context of other healthy behaviors and other self-care approaches can be a really effective tool. [00:59:10] Meghan Beier, PhD: Absolutely exactly what you were saying. Brought up a few different patients to mind. One who is, who, who did feel very guilty about taking naps but that helped her stay in her job. So she would go out to her car and take a nap. But I'm finding now, even with the pandemic that people are benefiting from staying home not having the commute, um, or being able to take short little rest breaks while they're at home, because they're not in the office setting. And. I just, I'm curious about how that will play out over time. If, if there will be more flexibility for people to be able to work from home and have those extra breaks built into their day. [00:59:47] Anna Kratz, PhD: Yeah, it would be great if people didn't have to go out to their car for a nap, but could just nap on their couch or in their recliner or on their bed. Because they're working at home and it's true that the, at the pandemic has, it's [01:00:00] not just fatigue, fatigue. It's. It's been hard running a clinical trial for fatigue because people are less fatigued and less stressed. And I think those two things go hand in hand. I think. You know, some people might be more stressed, but a lot of them people have expressed the exact same thing that you're saying, which is that lack of but the stressful commute with the long commute and just maybe getting out of stressful workplace dynamic environments is just helping people out too. I don't know. [01:00:31] Meghan Beier, PhD: Thank you so much, and I really appreciate this. And you taking the time to talk to me about fatigue. [01:00:37] Anna Kratz, PhD: Thank you. [01:00:37] Meghan Beier, PhD (2): In this final interview I talked with Dr. Abbey Hughes. She is a specialist and researcher in treating sleep disorders in people living with multiple sclerosis. If you're a mental health provider that specializes in health populations, like multiple sclerosis, please, head over to findempathy.com and click on, "Get Listed." We would love to list your practice in our directory and being listed is free. We're trying to help families and people living with chronic or acute medical conditions find the providers that can help them most. Abbey Hughes [01:01:07] Meghan Beier, PhD: Thank you so much for joining today, Dr. Hughes, can you just tell us a little bit about yourself, who you are, where you work and your experience with MS? [01:01:18] Abbey Hughes, PhD: Absolutely. Dr. Beier, thanks so much for having me on today. I am an Assistant Professor at Johns Hopkins University School of Medicine in the Department of Physical Medicine and Rehabilitation. I am a rehabilitation psychologist, and I have, expertise in training in multiple sclerosis rehabilitation. So my journey into this position really started as a graduate student, interested in multiple sclerosis and all of the different ways that MS affects daily functioning. And over time, my research interests have evolved to focus on health, behavior, change and ways that people with MS and people affected by MS, such as their support partners, can better manage the symptoms and the challenges that come with living with a chronic illness like MS. [01:02:02] Meghan Beier, PhD: So you're actually going to speak on two of our podcasts. Today we're going to focus on sleep. We're also going to hear from you about support partners. I wanted to kind of highlight the sleep area, cause I think many people with multiple sclerosis experience sleep disturbance and sometimes it's sort of under-recognized. So can you speak a little bit to, what are some of the common sleep issues that people with MS experience, how prevalent is it and just sort of some background information about sleep and MS. [01:02:35] Abbey Hughes, PhD: Sure, absolutely. Let's take a step back and think about sleep in general. Sleep is a absolutely essential, necessary health behavior that we engage in hopefully every day and in general, as human beings and particularly in the US. We do not get enough sleep and we do not take care of our sleep health. There's a lot of reasons for that, particularly with chronic health conditions, we are a population that often has lots of chronic health conditions that also affect sleep. So for people with MS sleep disturbance can come in many forms and over half of people with MS, do report some form of sleep disturbance. That can be difficulty falling asleep. So getting into bed at night and feeling like you can't fall asleep, there's a lot, lots of reasons for that. And we can talk about that in a bit, then there's difficulty staying asleep. So. Difficulty with waking up in the night, um, that could be to use the bathroom. If you have urinary frequency, it could be due to pain. It could be due to other types of sleep disorders such as sleep apnea or restless leg syndrome. So there's multiple factors that because one is living with MS. It predisposes them or increases their risk for having insomnia and other types of sleep disturbances. So overall it is a significant problem. It does tend to be underdiagnosed and doesn't always, it's not always asked about in your standard neurologic appointment because there's so many other things to cover in that neurology appointment that asking about sleep health sometimes gets pushed to the wayside. So that's why it's a really important thing that we're talking about today in terms of how to recognize, acknowledged poor sleep in particularly because of the negative effects that poor sleep can have on our functioning, when, when it's chronic. [01:04:24] Meghan Beier, PhD: And definitely an area of MS that mental health providers can provide a pretty big impact on. What are some of the reasons that people have difficulty falling asleep? [01:04:36] Abbey Hughes, PhD: Sure. So in with MS. And whether this is a person with MS or their support partner, the first idea that usually comes to mind is the idea of stress. We often get into bed and our mind starts wandering and racing and thinking about maybe all the things that happen during the day that we didn't like that didn't go as well for us and then all the things that are coming up tomorrow. I often talk about people on [01:05:00] Sunday night before, beginning the work week, if you do work having the Sunday scaries or thinking about that nervousness of going back to work the next day. So that from, from a psychological standpoint, that's, I think a pretty common experience that most of us in life have had some kind of difficulty falling asleep due to our mind being very active, but in MS there's some other reasons why falling asleep can be more difficult. And let's focus on some physical symptoms, for example, muscle spasms and pain are also common in MS. So about 30 to 40% of people with MS experienced some form of spasticity or that's, rigidity or spasms in the muscles. And over a third of people with MS also experienced chronic pain. And the chronic pain can come up about as a burning sensation, a tingling sensation pins and needles. Sometimes it can come as a numbness and oftentimes those pain experiences peak right around bedtime. There's some hormone reasons for that. There's some activity reasons for that. Um, but basically all of this is culminating right before one is really trying to shut down for the evening and fall asleep. And they can't do that because now they're having this symptom and it's really frustrating. It's difficult to fall asleep. [01:06:12] Meghan Beier, PhD: Hmm. Well, and you brought up, symptoms that might be impacting sleep. You also brought up that sleep can have an impact on MS symptoMS. And so I'm wondering if you can expand on that a little bit more. How do sleep issues interact with other MS. SymptoMS like fatigue, cognition, pain, those kinds of things? [01:06:33] Abbey Hughes, PhD: Yeah, absolutely. So with sleep, because it is such an essential health behavior, it helped, like, it helps to regulate most of our other daily functions. And I'll, I'll speak towards pain because I just spoke about that in terms of pain causing sleep disturbance. But there's also a great deal of research in MS and other chronic health conditions that poor sleep can exacerbate pain. Having poor sleep, particularly chronic insomnia can, uh, disrupt the immune system and it can cause inflammation. And when we have inflammation that can often increase the sensation of pain. So for people who have poor sleep, they are at more risk for having greater pain during the day. Now we can also think anecdotally, just when we don't have a good night's sleep, we're usually fatigued during the day. But for people with MS. Fatigue is already so common fatigue is the most common symptom reported among people with MS. Upwards of 90%. Now we have sleep disturbance as being another contributing factor to MS fatigue that can make that worse, which then we don't really feel all that sharp cognitively, we feel like we're kinda dull or slow. Um, and that we're not able to get through the day and in the same way that we want to. So having again, I'm speaking about chronic sleep disturbance, not just a single poor night of sleep, but the chronic, uh, lack of good quality sleep can lead to increased pain, more fatigue, cognitive symptoms, um, and also mood changes. So when we are not getting good sleep, for people who have a pre-existing history of depression, it significantly increases their risk of having another depressive episode for people without any preexisting depression, it can bring on mood changes. Being sleep deprived can also for people with bipolar disorder. If you go for long periods of time without sleep, uh, that can also trigger a manic episode or a bipolar episode. We know that people with MS are at increased risk for mood disorders. So that's definitely something even more important to pay attention to in terms of why sleep health is so important. [01:08:36] Meghan Beier, PhD: How is sleep evaluated by medical physicians? So maybe like a sleep medicine doctor and, what are some ways that you as a mental health provider, you as a psychologist, would evaluate sleep? [01:08:49] Abbey Hughes, PhD: So sleep is one of these things that is incredibly difficult to measure accurately because it depends on what aspects of sleep we most want to measure. When we're asleep. We are not in a static phase of unconsciousness. We go through many levels of sleep or levels of consciousness, and we need those different levels to perform different mental and physical functions. And so if you've never had sleep disturbance before and you present to your doctor for the very first time, they're going to ask you a lot of questions about what kinds of sleep disturbance you're having. So is it difficulty falling asleep, difficulty staying asleep or potentially for older adults and for people with chronic health conditions, waking too early in the morning can often be, a significant problem. Uh, so it starts with a lot of interview questions to try to target what kinds of sleep disturbance may be at play. Then what's really helpful is for people to track their sleep for about a two-week period. Particularly during the pandemic, but even before that, our schedules are kind of all over the place. If we just took our sleep on a single night, it would probably not be representative of our average. So it's really important to get multiple days [01:10:00] of sleep diaries or charting your sleep to really get an idea of what your average duration of sleep is. When do you typically go to bed? When do you typically get up? How many times do you wake up in the night? I think of parents a lot for this, that if you have young children and they wake up frequently in the night, you're sleep now probably looks a lot different than it did a couple of years ago. And then your doctor may also want to do some form of sleep testing, for example, a sleep study, which is called polysomnography, that can be done in a lab or in a hospital setting. Um, it often looks like a hotel room or a bedroom environment, but within a medical setting, or at your own home and with polysomnography you have, uh, sensors hooked up to you to measure your heart rate, and your brainwave activity to see that variation in that consciousness that I mentioned, because as human beings, we generally can't recall what level of consciousness we're at when we're asleep. We, we generally think of ourselves as I was either asleep or I wasn't where I was. I was kind of asleep. Those are kind of the three categories we generally think of, but polysomnography can give us a much more detailed view. It also gives us a good measure of our respirations or our pulmonary function. And as I mentioned before, there are many different kinds of sleep disorders. And within MS, sleep apnea is a very common diagnosis. Um, again, maybe up to a third of people with MS have sleep apnea. So that kind of testing can also measure your respirations or your breathing at night to determine if you might have sleep apnea. So from a medical doctor perspective, that for mostly testing would usually be a good start and that interview and doing the sleep diary to determine what your typical sleep schedule looks like. [01:11:46] Meghan Beier, PhD: Sure. So if somebody came into your office and you were working with them on sleep issues, would you recommend that all people, um, have a more in-depth sleep evaluation, some people, what would sort of indicate to you that you might want to refer somebody to a sleep medicine clinic? [01:12:05] Abbey Hughes, PhD: That's a great question. When someone is presenting to me or to a psychologist with concerns of insomnia. One of our first questions is could there be something medically happening that affects someone's breathing, or, uh, you know, another, uh, sleep diagnosis like narcolepsy, it's important to get those checked out and ruled out. However, if someone's presenting with mainly concerns that they are having trouble falling asleep and staying asleep, it might be worth trying some behavioral strategies first before going through the full a sleep study program. And some sleep centers will require that people do a trial of doing the sleep diary for several weeks, just to see what their behaviors look like, and then determine whether they actually want to bring them into the sleep lab for a formal study. And the reason being is that we're all vulnerable to having poor sleep hygiene or poor sleep behaviors at various times. And sometimes correcting those behaviors really will resolve the insomnia without requiring the more invasive testing, which is expensive. And the time again, away from family and then with COVID those precautions of just additional public exposures, although fortunately, that's becoming perhaps less of a concern now fingers crossed. [01:13:20] Meghan Beier, PhD: Absolutely. Yeah. And you know, one of the things that I think about too is, um, when I'm working with somebody and they're having sleep issues and if, if they're behaviorally doing well and there's some evidence maybe that they're having some pulmonary issues like snoring or a partner notices that they're not breathing in their sleep consistently. Are those also reasons that you might want to send somebody to sleep medicine? [01:13:47] Abbey Hughes, PhD: Yes, absolutely. So if there are concerns of sleep apnea, absolutely. Get that checked out, see a sleep specialist. Because if you're not getting enough oxygen in your sleep that can have also long-term health consequences. And we have good population-based data, not just in MS, but in the general population that chronic untreated sleep apnea is a significant public health concern. So if that is happening, if you have a bed partner, who's noticing that you have pauses in your breathing, or you wake up with really dry mouth, and headaches, those are often also symptoms that you may have sleep apnea and that's important to rule out. [01:14:25] Meghan Beier, PhD: Hmm, great. So you earlier you referenced some behavioral treatments for sleep and there is a formal treatment called cognitive behavioral therapy for insomnia. Can you talk a little bit about that and what some of the behavioral interventions might be? [01:14:41] Abbey Hughes, PhD: Absolutely. So cognitive behavioral therapy, particularly for insomnia has been around for a while. And it's now starting to be more comprehensively investigated in people with chronic health conditions. So CBT cognitive behavioral therapy for insomnia. It's a [01:15:00] specific series of strategy. Yeah. And, uh, lessons and working with a therapist to try to change one's behaviors around sleep. So your sleep schedule and your sleep structure, your sleep routine, it also affects your cognitions about your sleep. So it tries to target some of the unhelpful thoughts or beliefs that many of us grew up learning about sleep. So for example, if you ever heard that one must get eight hours of sleep every night in order to have a healthy sleep, uh, like in order to have good sleep health that's generally a myth and that the problem is not so much in believing that fact, but rather if you become distressed, when you don't get eight hours of sleep, Then that can also create some problems. And so with CBT, it works on again, the behavior component, but also the mental component of how do we think about sleep? What are some of these maybe unhelpful thoughts or beliefs we have around sleep? And particularly with MS, it may sound like I'm contradicting myself because a few moments ago, I was just saying all the bad things that happen when we don't get good sleep. And so it's understandable that if one is not getting good sleep, you might start to panic and think I'm not going to good sleep. Now, my MS is going to get worse. Maybe I'm going to have a relapse. There's these, these catastrophic thoughts that happened. And so the therapy also works to try to balance those thoughts where yes, we want to promote. Good sleep health and promoting optimal quality and quantity of sleep, but panicking and getting excessively worried about sleep becomes counter productive and also interferes with sleep. Um, so it's kind of like if you've ever tried to reel yourself to sleep, like just shutting your eyes and really hoping that you can fall asleep, it never works, right. You really have to be tired and ready for sleep in order for that to happen. So CBT-I really works to address both those behavioral components and the cognitive components. It also includes a couple of elements of things you may have heard called sleep hygiene. And these are just general health behaviors that tend to help promote sleep. So they're often added to a CBT protocol. So for example, limiting your caffeine use and having a good sleep routine and keeping your bedroom, cool, comfortable, quiet, and dark. Those are some of our sleep hygiene tips generally. [01:17:26] Meghan Beier, PhD: Hmm. Great. And you developed an online program for, CBT-I for people with MS. So I wanted you to talk a little bit about that program, but also you adapted that program for some of the things that are common to MS. Like if people have mobility issues and can't necessarily get out of bed. So, it'd be great if you could sort of highlight what's involved in that program and then ways that you adapted it specifically for MS. [01:17:53] Abbey Hughes, PhD: Sure. Absolutely with traditional CBT-I, one of the general rules of thumb are that if you're in bed for longer than about 10 to 15 minutes, and you feel like you're not sleeping, the general rule is to get out of bed. And the reason behind that is that we don't want our brain to associate being awake with being in bed. Instead, we want to train it, that bed is sleep, right? And the more things we do in bed while we're awake and whether that's just being awake, worrying, eating, talking, being on our computer or a phone, all those things decrease the likelihood that we will be able to fall asleep. Now for folks with MS, particularly folks who have mobility issues getting in and out of bed five times a night in order to adhere to the traditional CBT-I protocols is a bit of a challenge. And so with this program, we're investigating whether adapting it to meet the mobility needs of people with MS can be accomplished without the frequent getting in and out of bed. And instead trying some other techniques to address that. Now CBT-I has been so well studied that it is the first-line gold standard treatment for insomnia endorsed by the AMA. So. That's a lot to, to try to say, I'm going to adapt that and see if it works for people with Ms. And that's why this is research where we're investigating if doing these modifications still delivers some of these important outcomes for people with MS while still trying to maintain as much of that original protocol as much as possible. [01:19:26] Meghan Beier, PhD: Great. And in your clinical work with MS, since that I know that's a research study, but in your clinical work with MS, what are some of your go-to strategies for helping, improve people's sleep? [01:19:39] Abbey Hughes, PhD: Sure. So if we're doing a formal CBT-I program that usually involves several sessions where I, I work with folks who track their sleep each week, and if they are spending too much time in bed, not asleep, we tend to restrict the time spent in bed. And that's, that's a formal part of CB, CBT-I. [01:20:00] If someone is having mobility concerns, one of the adaptations that we've done is if they sleep alone, if they have their own bed, and let's say it's a full or a queen size of a sizable enough to have, let's say two sides of the bed, we'll say, well, one side of the bed is going to be your awake side. And the other side is going to be your bedtime or your, your sleep side. Again, this may dilute the overall effects of the therapy, but for someone who can't maybe get in and out of bed independently, it gives them some opportunity to still apply that protocol. Hmm. I also talk with folks a lot about activity. Given that fatigue management is such a huge part of MS management in general, that also affects sleep so napping during the day, can be really tricky when it comes to managing sleep disturbance at night. And so when I'm talking to folks about managing their fatigue, some people can take a 20 minute nap, even an hour long nap in the afternoon, and it doesn't affect their sleep at night at all. For others as soon as they take that nap, it adds at least an hour or more to their ability to fall asleep at night. And so we talk about compromise, right? This is where the clinical piece comes in is that every person is different. Their context is different. Their family situation is different. We try to figure out does that nap actually allow you to participate more in your life? Right. How important is that nap in terms of. Helping you function in the day. And if it's really important to keep that nap, for your work productivity, to be able to participate with your family, et cetera, then that's great. Let's just push your bedtime back for at least as long as you napped. So if you took an hour long nap, let's push your bedtime back an hour. And that might mean going to bed at midnight or one, and then we can revisit that nap schedule later. If that's not working. We can talk about resting instead of napping. [01:21:50] Meghan Beier, PhD: What are your go-to resources? So if somebody was working with a person that has MS and they wanted to refer them to some resources for getting better sleep hygiene what are some of those go-to resources that you really like? [01:22:04] Abbey Hughes, PhD: Sure. So for MS specifically, the National MS Society has a great website focused on sleep hygiene and sleep health. And they updated every couple of years with the latest research and the latest tips. There's also been some podcasts on this topic. So I definitely recommend going to those. Is in speaking of the online program, I'm certainly not the only one to be pursuing web-based CBT-I. Um, so there are some programs through the University of Kansas and the Cleveland Clinic that have also created online programs. Um, the one at the Cleveland program is called "Go To Sleep." And so these are some at home training programs that people can do to try to improve their sleep beyond just, uh, the MS Society or MS specific sleep management. Um, there are some really wonderful CBT-I and sleep health organizations out there. The Society for Behavioral Sleep Medicine is one as, as the National Sleep Foundation, they have some really great education tools on creative ways to manage sleep disturbance more effectively. [01:23:06] Meghan Beier, PhD: And are those last two also organizations that could train mental health providers if they wanted to get more training in CBT-I? [01:23:14] Abbey Hughes, PhD: Absolutely. Really the Society of Behavioral Sleep Medicine has a yearly conference and also has a monthly webinars focused on learning more about sleep and sleep research and clinical service delivery within behavioral sleep medicine. [01:23:29] Meghan Beier, PhD: Wonderful. Thank you so much. Are there any other last, or the, is there any other tools, tips, or information that I didn't ask you about that you think would be important to know about sleep and MS? [01:23:42] Abbey Hughes, PhD: You know, once we touched on was how MS usually doesn't occur in a vacuum. It usually affects the whole family system. And that can include, bed partners that can include children. It can, it can, it can include the whole family system. So oftentimes I will engage whole families when we talk about changing one sleep schedule. Right? So if, if someone has been trying to go to bed at 9:00 PM and now suddenly through therapy, we're saying, Oh, your new bedtime is now midnight. That's a huge shift. So it's really important to work with families, to understand why these changes are being made, why they're being suggested and potentially to engage other family members in that process too. Because research on, bed partners show that if one person is having poor sleep, usually the other person has also having poor sleep by default. [01:24:30] Meghan Beier, PhD: So can you tell me a little bit about how MS medications can impact sleep? [01:24:35] Abbey Hughes, PhD: Sure. Depending on the kind of medications that you take, there are side effects of some medications, including those for Ms that can disrupt sleep. Even if they are intended to help with fatigue, for example. So there are a stimulant medications that some people take to help with their fatigue management, but depending on the timing of those medications, it can make it more difficult to fall asleep at night. So it's really important to work with your prescribing provider to figure out the [01:25:00] timing of medications and how much benefit versus side effects you're getting from that. In the context of a relapse of MS. So, uh, if you were having new lesions in your brain showing up on MRI with new clinical symptoms, your neurologist may also prescribe an intense multi-day steroid prescription. That can be infusion and generally steroids are really, negatively impactful on sleep. So they can disrupt your ability to fall asleep and to stay asleep. Um, it can make us pretty irritable during the day. So when I'm working with someone, if they've had steroid treatment in the past 30 days I usually have the caveat of, you know, your body is still probably recovering from that steroid treatment. Let's give it a couple more weeks to determine if this is a new insomnia disorder or if this is still some of the residual effects of the steroid treatments. Some people with MS may need to take steroids more frequently, and if that's the case, then we work on some other coping skills for managing some of that irritability or that activation that sometimes comes with the steroid use. [01:26:05] Meghan Beier, PhD: That's really helpful. That's very helpful. I actually have a patient who I'm thinking of who I think that happens with. So thank you so much for being here. This was really helpful information about MS and sleep and providing great resources for mental health providers to follow up on. If people want to follow you on social media or just learn a little bit more about what you do in your work what's the best place for them to find you? [01:26:29] Abbey Hughes, PhD: Sure. So my website through Johns Hopkins has my professional information and through social media, I tend to use Twitter and my handle is @AbbeyJHughesPhD. Conclusion [01:26:41] Meghan Beier, PhD: Thank you for listening to the Find Empathy podcast! If you would like continuing education credits for listening to this episode, go to: findempathy.com/learn. Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. Our education, and this podcast, is focused on increasing the number of mental health providers who can help. If you are a psychologist or a mental health provider that specializes in health populations, please consider signing up on the free Find Empathy directory. Go to findempathy.com and select "Get Listed." We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. If you have suggestions for topics you would like covered by this podcast, let us know. Our email is [email protected]. Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. Also remember that the content provided today is for educational purposes only. Please seek the guidance of your doctor or mental health provider for any questions you might have regarding your own health or medical condition. Thank you so much for listening and we look forward to you joining us in the next episode.