Arthritis & the Quest for Rest

 

Released March 18, 2025

 

PODCAST OPEN:      

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. This podcast and other life-changing resources are made possible by gifts from donors like you. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts.

 

MUSIC BRIDGE

 

Trina Wilcox:

Welcome back to the Live Yes! With Arthritis podcast. My name's Trina Wilcox, your host for this episode. I was finally diagnosed at age 6. My parents had been trying to figure out what was going on with this kid, and so they finally got the diagnosis at 6 years old. And going through the youth, teen, adult, it constantly changes, the rheumatoid arthritis. And doing all of the right things is something we all try to do the best we can. Hydration, diet, exercise and sleep.

 

Sleep is something we are going to be talking about today. And when you live with arthritis, it can be one of those things that it just feels like a loaded word because lack of sleep and the pain from arthritis can just take you out. All of the fatigue hits you, and it sends you into this cycle of sleepiness, pain, fatigue, and that can be hard to break. And there are other factors that play into it — with restless leg syndrome, sleep disorders, sleep apnea and so much more. In this episode, we are going to explore these sleep issues, why they occur and, ultimately, what you can do about them so you can get your much needed rest.

 

Today, I'm joined by Alfred Kim, MD, associate professor of medicine in the division of rheumatology at Washington University School of Medicine and the director of the WashU Lupus Center in St. Louis, Missouri. Dr. Kim, welcome to the podcast.

 

Alfred Kim, MD:

Thank you so much, Trina, for this invitation. I'm really excited to be able to talk about this with you.

 

Trina Wilcox:

Good, because we need to know more. Tell us a little bit about your experience in sleep and fatigue and arthritis.

 

Alfred Kim, MD:

As you mentioned, I'm a rheumatologist. I'm an adult rheumatologist. I do sleep, I do experience fatigue. (laughs) I'm starting to get some arthritis myself. I think our foray into sleep, particularly within the lupus realm, but this is certainly applicable to all people with arthritis, really came about because, when we started our lupus center some 10 years ago, many people with arthritis and other related diseases have complicated journeys. And sometimes these visits take a little bit longer than what is scheduled, so you run behind.

 

And so, what we noticed, though, is when we're running behind, say 20 minutes, and we get into a room with a patient, they're asleep. And, you know, it'll be in the morning time, it'll be in the afternoon, it doesn't really matter. I get that most physician offices are environmentally sterile. Not just clean, but also very little stimuli to keep you up.

 

Maybe your cell phone signal or Wi-Fi doesn't work so well in that office. And so, we're thinking, "Oh, well, there are reasons for this." But we started doing some research on this in our own patient population and found similar observations to what other people have found: that the majority of people with rheumatic diseases such as arthritis have poor sleep quality and have a lot of difficulty coping with it. So, this ended up being a project started with Alicia Hinze, who's now a faculty member at Mayo called SLEEPS: Systemic Lupus Erythematosus and the Evaluation of Poor Sleep.

 

We haven't published all the data yet from it, but we've done a lot of work with other groups to be able to investigate this. We came in from a research perspective, but the genesis of that research really came from just a simple observation that many of our patients were unfortunately sleeping in the office.

 

Trina Wilcox:

So, one of the first things to test is removing everything and making a very sterile, cold environment for us to get the sleep we need?

 

Alfred Kim, MD:

Maybe. (laughter) We'll talk about that.

 

Trina Wilcox:

All right.

 

Alfred Kim, MD:

It may be more complicated. (laughs)

 

Trina Wilcox:

Sleep is something a lot of people can relate to. And even people with arthritis, around 80% by some estimates, have trouble sleeping. So, whether it's trying to get to sleep, staying asleep, both of those things, research shows that most agree: They hurt more when they have a bad night, you know, and this creates just a vicious cycle. What have you found to be the greatest obstacles for people with chronic conditions like arthritis so we can get a good night's rest?

 

Alfred Kim, MD:

This is a really challenging question to answer since the root causes for poor sleep, they're very diverse. There are hundreds of sleep disorders that you can be diagnosed with. They're complex. Some of them require substantial non-pharmacologic interventions in order to get to a solution. And then they also can interact with each other, which is really problematic. As you mentioned, everything from pain and pain amplification, which worsens at nighttime, this definitely can prevent people from getting to sleep. But then there are issues in terms of interrupting sleep, whether it's parasomnias, like sleepwalking, or night terrors, or nightmares, to obstructive sleep apnea, which can be so persistent you can have 100 of apneic episodes a night. And this is going to prevent any functional sleep from occurring.

 

And then even things like chronic insomnia. This is where colloquially people forget how to sleep. Sometimes people's poor sleep is so entrenched that they replace the behavior of sleep. Sleep is actually a behavior, with another behavior. And especially people with bad pain at night, they actually have a negative association with the tiredness and fatigue at nighttime.

 

The biologic cues, like a melatonin surge. And instead of them going to sleep, they replace it with an activity to reduce that pain amplification. So, this is what we call chronic insomnia, and this is what we mean by people forgetting "how to sleep," because now they've replaced the behavior of sleep with something else. And now that's a really difficult situation to get through.

 

Trina Wilcox:

What are some of the most common types of sleep disorders, especially for people with arthritis?

 

Alfred Kim, MD:

I think regardless of what type of arthritis, whether it's the osteoarthritis or rheumatoid arthritis, psoriatic arthritis, gout, I think, generally speaking, the U.S. population experiences a lot of the same things, maybe at higher frequencies. Short sleep duration, you know, this is a big problem. We stay up too late at night. Humans are the only species on the planet that deliberately delay sleep. But we have to wake up in the morning for work or other obligations.

 

Obstructive sleep apnea that we had discussed before. Weight gain is a major risk factor for obstructive sleep apnea. It's also a risk factor for osteoarthritis and can make those symptoms worse. Medications such as steroids, treating psoriatic arthritis, rheumatoid arthritis, can cause weight gain and then subsequent obstructive sleep apnea.

 

There are also other conditions, such as these non-organic sleep disorders. These include restless leg syndrome, the sleep-wake schedule disorder, in terms of your sleep cycle and your social schedule don't match up. Maybe you are a night bird, but you have to be at work at 6:00 in the morning, right? That's going to be an issue. Parasomnias, such as night terrors and sleepwalking, these are the conditions that dominate what has been reported in research. And then I think one thing that has been under-recognized is this chronic insomnia bit also.

 

Trina Wilcox:

So, what is causing some of these things? Is it our medication? Is it the disease? Is it a combination? I've also learned of something called drug-induced hyperhidrosis, which can result in night sweats as a result of a lot of the medications that people with arthritis are taking.

 

Alfred Kim, MD:

That's such a good point. It's multifaceted. I think we do all agree that people with arthritis generally have higher rates of sleep disorders. You had mentioned 80%. We see the same number in our lupus clinic patients with poor sleep. This is compared to about one-third, or 33%, in the general U.S. population, so there is definitely an enrichment of poor sleep. Now, what is causing that? Is it the disease in and of itself? It certainly could be.

 

We do know, though, that people with chronic poor sleep issues generally are hyper inflamed. The best studies actually come from a mouse work, but there have been some work in humans, where they've starved people of sleep for 10 days, maybe 14 days. And you can see inflammatory protein levels, such as interleukin-VI, or IL-VI, starting to shoot up and stay up during the study period. And so that's only 10, 14 days.

 

You're going to have some listeners out there… They're like, "Gosh, I feel like I haven't slept well in years." And that could then drive increased disease activity, increased arthritic pain, increased need for other medications. So, that's one huge basket.

 

Trina, you mentioned medications, and certainly glucocorticoids, steroids… Prednisone really is a major threat potentially, depending on the dose. Anything above five milligrams a day could potentially interfere with your sleep. Just for the listeners as a reminder, physiology 101: One of the hormones that wakes us up in the morning is cortisol. Starts to surge around 4:00 a.m. and actually counteracts a hyperinflammatory environment at nighttime, which is normal for all humans, which is interesting.

 

Now, prednisone is a synthetic cortisol. And if we use doses that are higher than what we are physiologically used to, this can certainly interfere with sleep issues. So that's one thing. You can also have side effects from medications that interfere with sleep. You had mentioned the hyperhidrosis issue. These are going to be a little bit less common, but also very individual-specific. Not everyone is going to experience it.

 

And I think that is a major problem because I think both support systems for that patient, but also sometimes physicians, don't necessarily validate that experience. They kind of bury it to the side. And now you've lost an opportunity to improve quality of life and health. We could keep talking about this particular thread forever, right? But, you know, I think those are kind of like some of the major relationships that we are seeing broadly in people with arthritis.

 

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Trina Wilcox:

Can you kind of give a definition — because I feel like we use them interchangeably — but fatigue and sleep. So, people kind of understand, when they're trying to communicate to their doctor, that they're hitting it as close to home as possible.

 

Alfred Kim, MD:

Sleep is actually a biologic cycle, governed by what's called a circadian rhythm that is a behavior that is key for cognition, biologic and physiologic restoration, and then continued maintenance of that circadian rhythm. Now, if your sleep is insufficient, whether it's duration and/or quality, this results in fatigue, which is that biologic cue that you're not sleeping well enough. Fatigue ends up being the result typically of poor sleep and that it should trigger the body to want to get better quality sleep or longer sleep.

 

For people with chronic insomnia, that's almost impossible, because they can't sleep anymore, really. These people pass out for 12 hours. They're like, “Wow, you slept for 12 hours. That’s amazing,” but they wake up unrefreshed, which means their sleep quality wasn't good. And this tends to be a red flag for this chronic insomnia bit. That relationship is very entrenched with sleep kind of being that driver for whether someone experiences fatigue or not.

 

Trina Wilcox:

So, a lot of these issues can actually be kind of hard to recognize, to identify, “I’m having this sleep issue,” because you're just kind of cranky and tired. And all you want to do is get that quality sleep. What tips do you have to home in and recognize them?

 

Alfred Kim, MD:

Yeah, so I think this is… Probably the most important question to ask is: Do you wake up refreshed routinely? Not sleep duration, as we mentioned before, because sleep quality is a huge component of that. Once you recognize that you may be a poor sleeper, then the work with a sleep physician or a sleep specialist then can ensue to determine root cause or causes.

 

Now, I will say that most non-sleep physicians do not get this question right. They always ask about duration, but that again makes that assumption that sleep quality is sufficient, right? Asking yourself the question, “Do I wake up refreshed routinely?” ends up being a summation of both duration and also quality. Then let the experts, the sleep specialists, determine which one or the combination of which ends up being the issue and then working towards a solution.

 

Trina Wilcox:

OK, which brings me to how the sleep disorders are typically diagnosed.

 

Alfred Kim, MD:

I would say they're typically underdiagnosed. (laughs) I mean, again, most of us, I would… you know, it's interesting. Just in the general public, a third of patients have some sort of sleep disorder, but certainly not a third of patients see a sleep specialist, right? So, the diagnostic pathway really starts with that recognition: “Do I wake up refreshed?” And maybe a follow-up question about: “Do I feel like I have to take a nap in the afternoon, or I'm tempted to?” Sometimes, your schedule or work or social commitments cannot let you do that. But then, once you get referred to a sleep specialist, which tends to be either a neurologist or a pulmonologist, both of those specialties have sleep subspecialties, certifications.

 

I'll say most people do get a sleep study, whether this is going to be at a sleep center or… Insurance companies are starting to increase the usage of home sleep studies, largely because it is very uncomfortable to sleep in a new place. And you always get noisy data from those types of sleep studies.

 

So, home sleep studies are being covered by insurance companies now, but this can then drive a wide variety of things. I think the best sleep specialists I've worked with, they can determine a lot of which type of sleep disorders, generally speaking, a patient may have from a careful history. Asking those questions: “Do you wake up refreshed ever?” Right? If they don't, this really puts them at that chronic insomnia plus/minus some other things.

 

If they do say, “Well, on occasion I do wake up refreshed if I sleep long enough,” that tells them that they have nice intrinsic sleep quality, but it could be a duration issue. It could be a scheduling issue, right? That night bird, nighttime type person versus the early bird schedule. A lot of these factors kind of build into the kind of totality of potential diagnoses that need to be then addressed by the sleep specialist.

Trina Wilcox:

What are some of the treatments folks could expect to maybe have to deal with, with these sleep disorders?

 

Alfred Kim, MD:

Let's start off with the one that a lot of people understand or have heard of maybe: obstructive sleep apnea. This is a phenomenon where the airway actually closes tight at nighttime. The reason why this happens is actually very physics based. The muscle around our airway in our neck, the larynx, is made out of what we call skeletal muscle. This is the type of muscle that can relax when there's no nerve tone to it. And most of our muscles relax.

 

Skeletal muscles relax at nighttime. Well, if you have a lot of weight around the larynx or you just happen to have a tight airway, the passage of air through there is narrowed. Now, when you take a deep breath in, this actually causes a vacuum of pressure in that airway. So, if you already have a little extra weight on that airway, and the airway is already narrow, and you end up having all of a sudden a vacuum of pressure, that airway shuts tight.

 

That's the reason why machines like CPAP — Continuous Positive Airway Pressure — are used to make sure that there's always air pressure keeping that airway open, despite the fact that there's no muscle tone. Without CPAP, what ends up happening is that when your airway closes down and you become apneic, your brain actually wakes up. Not necessarily in terms of awareness, but in terms of motor tone, to restore muscle integrity in terms of their strength, and opens up the airway, but this interferes with the sleep cycle. So, again, you may not be aware of this because you're not conscious.

 

You're unconscious, and so I think this is a really good point for patients with arthritis to understand, is that being unconscious does not necessarily mean you're sleeping, right? We've talked about that chronic insomnia. Apnea can create this situation, too. That's going to be something that they and their sleep specialists can discuss.

 

Trina Wilcox:

I know a lot of people, when they hear CPAP, they think of these gigantic machines. And through some of my limited research, I know they've gotten smaller. But to me, that seems like that would be very uncomfortable for someone who's already in pain and can't get comfortable. Are there any other options?

 

Alfred Kim, MD:

Yeah. I imagine if I lived in a world where maybe I'll get obstructive sleep apnea, I may be one of the first people not to use it. (laughs) It just seems so invasive to have a mask, so there are ways to still use CPAP by using different types of masks. If you're a nose breather, primarily the mask can be much smaller and not cover the entire mouth and nose, but just the nose itself.

 

There are other oral appliances that can be used: mandibular advancement devices. That keeps the jaw thrusted forward. There are also retaining devices for the tongue that keep the tongue in place, so it doesn't slide back also. Now, there are more invasive types of approaches, such as surgical interventions. Probably the most interesting one that's popped up most recently is the Inspire implant, right?

 

Trina Wilcox:

Yes.

 

Alfred Kim:

This is actually a really fascinating device. There's a fraction of people with CPAP that qualify for it. You have to be relatively small and still have apnea in order to qualify for this. But basically, it's an implant that you turn on with a wand over a device that's in your chest, a very small device, that stimulates the hypoglossal nerve, or the tongue nerve, and keeps it forward. This can be super effective for those where the airway itself is open, but the tongue slides too far back. So having the tone in the tongue through this device seems to be very effective for those people that have this specific type of sleep apnea.

 

There's a lot of different tools and novel ways outside of just CPAP. They're always going to tell you about lifestyle modifications. Try to lose weight. Try to sleep in a certain position. I mean, if someone tried to tell me to sleep in a certain position at nighttime, but I'm unconscious, yeah, most likely I might not do that.

 

Trina Wilcox:

Yeah, good luck.

 

Alfred Kim, MD:

I get that can be challenging. But there are additional ways to be able to treat it without CPAP. Other conditions, like restless leg syndrome, really unusual condition to me. It's hard for me to actually physiologically understand this. It's definitely associated with iron deficiency and, some have argued, iron deficiency in the brain.

 

But what's weird is that we typically think of iron deficiency associated with low red blood cell counts: or anemia, iron deficiency. And so, you get some iron for that, but the majority of our patients with restless leg syndrome actually don't have an anemia, but they're still iron deficient.

 

There's a test called ferritin, which can be used to help diagnose this. And if it's low with the right symptoms, of kind of like restless limb movement at nighttime, that kind of clinches it. So, iron replacement can help some of these people. But there are actually other reasons for restless leg syndrome that a sleep specialist can pick up on.

 

One that is increasingly being diagnosed is narcolepsy. This is often associated colloquially with just falling asleep at any given time, no real trigger. This is actually an autoimmune condition. This was identified about 10 years ago and, unfortunately, especially for those people with rheumatoid arthritis or psoriatic arthritis, if you have one autoimmune disease, yeah, you're more likely to get another one. I hate to bring that up, but…

 

Trina Wilcox:

Jackpot. (laughs)

 

Alfred Kim, MD:

Yeah. (laughs) Jackpot, right? We are increasingly seeing a higher rate of people with rheumatoid arthritis, psoriatic arthritis, lupus and other related diseases also having narcolepsy. And this was underdiagnosed in the past, I think. And again, a sleep specialist can definitely help with that. Generally speaking, though, every sleep specialist is going to be talking about sleep hygiene.

 

Keeping a consistent schedule, which is really hard in our society. Reducing the number of distractions, which can then actually promote behavioral switch from sleep to something else, i.e., watching TV in bed or reading something in bed. For people that have trouble getting to sleep, if their pain isn't necessarily a main distractor, so sleep initiation issues: Relaxation techniques, such as meditation, actually are really effective.

 

Now, if you have a lot of amplified pain that gets worse as you try to fall asleep, very different situation. There, that nocturnal pain control is really critical. We typically start off with muscle relaxants, not only because the muscle pain can be reduced because of the muscle relaxing properties, but also these medications, like cyclobenzeprine, or Flexeril, also have as a side effect of drowsiness, which can help, and also blocks pain output from the brain, so you don't feel as much pain.

 

So, you know, even though it's an oldie and goodie, these drugs have been around for a while, we love using muscle relaxants. Key thing, though, is that… Make sure muscle relaxants are used in conjunction with your rheumatologist or sleep specialist because there's a significant minority, probably about 30%, maybe even 40%, that wake up too drowsy to function in the morning.

 

Trina Wilcox:

Yeah.

 

Alfred Kim, MD:

You know, right? So, we're still learning how to figure out and develop new medications that can help reduce pain perception at nighttime without having a carryover effect into the next day. In totality, you can hear all these widely varying solutions depending on this root cause or causes. And this is, I think, the reason why sleep specialists are just so critical in kind of getting to the core issues and then trying to address them in the most effective way possible.

 

PROMO:

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Trina Wilcox:

What kind of steps does someone need to start doing if they suspect that they have a sleep disorder? What kind of treatment should they be seeking?

 

Alfred Kim, MD:

Living with a chronic disease is so challenging because there's a lot of control that is lost during the process. So, one of the ways to be able to recapture a little sliver of that control is to be able to say, “OK, am I getting restorative sleep? Am I consistently waking up refreshed?” If the answer is no, which the majority of people are going to be answering no, have a discussion with your rheumatologist or your primary care doctor, whoever it ends up being — someone you have these type of discussions with, typically a rheumatologist — about whether or not there's some obvious things that could potentially be addressed.

 

But typically speaking, as soon as I start hearing that, I know I'm pretty much out of my league. (laughs) I immediately refer them to our sleep group in order to kind of get that process started. You can do some additional things at home on top of that. Sleep hygiene, you know, I think things like chamomile tea can be really relaxing for some. That's what I use in order to get myself to sleep. Melatonin is a very popular supplement. This is challenging, only because, true, everyone needs melatonin in order to kind of get their brain ready for sleep cycles. But more recently, we found out that each person each night has different melatonin requirements in terms of how much. And that means that the same dose every night doesn't always work.

 

Sometimes it's too much, sometimes it's too little, and we don't have a good way to assess that. This is where a sleep specialist is really critical. Another thing, this is probably underdiagnosed, this chronic insomnia bit. Medicines are not effective for this. It actually requires what's called CBTI, or cognitive behavioral therapy for insomnia. It's a very specific type of behavioral therapy approach in order to almost relearn how to sleep. Sleep psychologists or occupational therapists are trained in this.

 

A word of caution to patients with arthritis, though: Not all sleep centers will have either of them. So, if you end up moving to the path where chronic insomnia is being discussed — or if you feel like we've tried some solutions, and my CPAP looks good, the numbers look good, or I've taken my iron supplements because it's definitely iron deficiency, associated restless leg syndrome, but I'm not getting better — these sleep disorders sometimes interact, and you can have multiple, right?

 

And at least for our lupus patients, the average number of sleep disorders they have is 2.4 for any given patient. This means you have to address multiple things at the same time, with chronic insomnia being the most difficult to treat and probably the most underdiagnosed. A sleep center with a sleep psychologist or an occupational therapist is really that key. And if you can find one of these to start that journey of retraining how to behaviorally associate sleep with the darkness of the daytime — sun waning, the melatonin natural surge, and the fatigue that, you know, these patients have — that then starts to come together. And then patients end up having actually restorative sleep. And then things can dramatically improve at that stage.

 

Trina Wilcox:

Good. Is there anything else we haven't thought to talk about when it comes to sleep and arthritis and making the most of that valuable time?

 

Alfred Kim, MD:

The most important term is time here at the end, right? Like, I think the time is now for a lot of our patients to really have this discussion. I apologize on behalf of much of the health care community that we haven't really addressed this. It's almost like the western culture has kind of forgotten the importance of sleep. We almost reward ourselves sometimes. Like, “Oh, you know, I only got three hours of sleep last night!” That's not good.

 

Trina Wilcox:

No. It's not right about that.

 

Alfred Kim, MD:

If we could kind of have that honest conversation, pushing aside almost the social pressures of poor sleep and really think: “Wait a minute. You know what? The last week for me, I know I got to bed too late. It was, you know, a lot of reasons, but there's really no excuse. I really just need to reschedule things at nighttime in order for me to get ready to get to bed at the time I need to get to bed. So, I had to make the change over the weekend.” Sometimes it can be as self-directed as that. People with arthritis, we're seeing just more complicated scenarios coming about. That really does require that professional level input for help. I think that's going to be something that would be important.

 

Other things that can help, that patients can really start the journey to improve sleep, is really getting that sleep hygiene under control. Now, again, sleep specialists can help with that journey, because it's just like, oh, quitting smoking or losing weight. Yeah, easy to say, hard to execute.

 

Trina Wilcox:

Thank you for recognizing that and sharing that. Before each episode we post a question on social media. And this episode we asked: How have you managed to get your Zs? And some of the responses… Alison Barber said, "CPAP," like you had talked about. "One thing for sure, lack of sleep seems to make the pain worse. And I flare when I'm really tired, but then sleep doesn't always seem to sort that fatigue."

 

Alfred Kim, MD:

Yes, I hear that, and I hear a couple things. First of all, that relationship between poor sleep quality or insufficient sleep duration with pain. Everyone, regardless if they have arthritis or not, experiences this with prolonged… We’re talking several nights of poor sleep.

 

I actually, personally, think that whatever we want to call it — fibromyalgia, or chronic pain syndrome, or amplified pain syndrome — to me is a sleep disorder primarily and usually chronic insomnia, right? That's the root cause. We have definitely seen people with fibromyalgia get much better once they get good CBTI, the cognitive behavioral therapy for insomnia. That relationship, in my mind, seems so strong.  But then that last sentence, you know, the sleep doesn't always seem to sort to fatigue.

 

Oh, wait, we just talked about this: that a lot of patients have multiple sleep disorders going on at the same time. It's easy to say, "Oh, it's a CPAP fix." All right? It's like, "Oh, your vitamin D is low. Let's give you vitamin D supplementation." Patients with arthritis tend to have more nuanced sleep disorder issues, more sleep disorders. Each of them have to be addressed. So, it's not sufficient to address one of them, but you have to have all of them sufficiently addressed. And I'm wondering for Allison whether or not something else is brewing underneath there that's preventing her from having the energy levels that she's seeking during the daytime.

 

Trina Wilcox:

I don't know how much you can speak to this, but I feel like there's probably other patients out there that can relate. Elisa Bateman Komer said, "RA has now begun to live and take over my TMJ joints, causing significant pain and TMD that affects sleep, among other things. I found a neuromuscular dentist/surgeon who put me in a special orthotic that really helps for sleep apnea." Which she doesn't have, but it helps her TMD. It says, "Patients relax more and get a better night's sleep and it's really helped." She wants other patients to know about it and thinks it would help a lot of people.

 

Alfred Kim, MD:

Anyone who snores, even mild snoring at nighttime, which I am one of those people, are at risk of obstructive sleep apnea. Now, I don't know if Elisa has snoring at nighttime or has even some disrupted airflow, a potential risk factor for apnea, this type of apnea. I hear this and I wonder whether or not there was an underdiagnosis of obstructive sleep apnea in her.

 

In terms of the actual orthotic, I would have to talk to a neuromuscular specialist, or a maxillofacial surgeon, or a dentist to be able to figure out: What is that mechanism going on there? It kind of sounds like she may have had obstructive sleep apnea that was not diagnosed.

 

Trina Wilcox:

OK. James Korzympa says, I apologize if I said your name wrong, "Being on a sleep schedule helps. Fatigue is the worst symptom for me and can strike at any moment during the day." I think that's interesting, too. Kind of makes sense that it's not necessarily just going to hit you in the morning.

 

Alfred Kim, MD:

James, I 100% agree. Every one of us has interrupted sleep quality issues at some point in each week or month. I can tell you, like, yesterday afternoon, 3 p.m. hit. I had to go on some meetings, but I was really not in the mood because I was really fatigued. It is the worst symptom because it's kind of… It sneaks up on you. It's a little bit unpredictable. You feel energetic 15 minutes ago and now you feel like a jellyfish on the beach now. The sleep schedule is really that key. It's that behavioral entrenchment that counteracts the human behavior of deliberately delaying sleep.

 

Trina Wilcox:

Patrice Johnson says that she takes a sleeping aid every night, Tylenol PM. “It doesn’t knock me out completely,” she says, “but it at least controls my insomnia, which would normally have me waking up every hour. This helps me stay asleep. I also don’t have side effects in the morning. But word of caution,” even though it works for her, “it might not work for everyone else. Always check with your doctor.” Appreciate the little subtext there. (laughs)

 

Alfred Kim, MD:

Patrice is 100% correct. And that's really good insight, right? Like, everyone's going to find kind of their own solution. You don't want to have to be on a machine or go through a massive workup. People with arthritis have very high interaction with the health care system. Too high sometimes, right? You feel like, “Oh, I have to keep giving blood, I have to keep getting X-rays, I have to keep getting these tests.”

 

I get that. Fatigue, right? So again, part of that ownership and control of your health. Yeah, I get it. You know, we all do it. And so for her, you know, Patrice, Tylenol PM. You know what? Keep going. All right? As long as the dosing isn't very high, because Tylenol can affect the liver. If that's sufficient for you, Patrice, yes. Her solution is hers and maybe hers alone, right?

 

Trina Wilcox:

Yes.

 

Alfred Kim, MD:

It's just kind of people exploring. And again, for patients that feel like they've explored a lot of their own options and feel like they've only gotten partial improvement, make sure you take some notes, so the sleep physician knows what your journey has been. And it helps us narrow down, much like the journey for people with rheumatoid arthritis or osteoarthritis, etc., what the right next step is. And so, we don't make the same mistakes in the past.

 

Trina Wilcox:

I'm glad you said that, too. I know taking notes can seem cumbersome, but sometimes you'll jot down the littlest thing that can give so much insight to the specialist that you didn't realize, so...

 

Alfred Kim, MD:

Absolutely.

 

PROMO:

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Trina Wilcox:

So, give me your top three takeaways from this conversation.

 

Alfred Kim, MD:

Patients with arthritis, ask yourself: “Do I wake up refreshed normally?” Follow that up with: “Do I feel so fatigued that I have to, or I am tempted to, to take a nap during the daytime, right?” If the answer is yes, I think a discussion with your rheumatologist is really necessary to kind of start that journey. This impact in quality of life, whether it's professionally or socially, that's kind of a red flag to me.

 

Number two, try to keep a good sleep hygiene schedule. Hard to do, so hard to do. Maybe you need to go to tip three: Get a sleep specialist on board. 80% of patients with arthritis have a sleep disorder. Some of these can be self-managed or managed without a sleep specialist. I would argue that the majority do require a sleep specialist on board in order to optimize things. So, those would be my three top takeaways.

 

Trina Wilcox:

Those are very good. I think mine would be: Do what works for you. I'm kind of like Patrice here. Sometimes Tylenol PM works great for me. Melatonin doesn't seem to be effective. I'll go to sleep and wake back up, so that doesn't seem to help me. So, do what works for you. Also, keep the notes, even though it sometimes seems like a struggle. Keep the notes when you can: on your phone, paper, whatever works for you. And you said something earlier; you said, “Act now.” I like that because I know sometimes we're inclined to put things off or think it'll get better when it's just frustrating us more and more. And the sooner you can take some action, the better.

 

Alfred Kim, MD:

Absolutely.

 

Trina Wilcox:

Thank you so much, Dr. Kim, for your time today. It's been a good conversation. I hope everyone has taken away something they can use and to make their life better or someone they know with arthritis. Get more information anytime at arthritis.org. Thanks so much. See you next time.

 

PODCAST CLOSING:

The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. Gifts from people like you make our podcast and other life-changing resources possible. You can donate at arthritis.org/donate. This podcast aims to help people living with arthritis and chronic pain live their best life. For a transcript and show notes, go to arthritis.org/podcast. Subscribe, rate and review us wherever you get your podcasts. If you subscribe through Spotify, leave a comment on their platform, letting us know what you think about this episode. And stay in touch