Podcast: Sleeping Well With Arthritis

Full Transcript:
Released 3/12/2024

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

Jenn Ziegler:
Welcome to The Live Yes! With Arthritis podcast. I'm your guest host Jenn Ziegler. I'm an arthritis patient and a staff member at the Arthritis Foundation, overseeing all things volunteer engagement. My arthritis story began early in life when I was diagnosed with juvenile arthritis at only 9 months old. Luckily, my family found support and resources early on from the Arthritis Foundation, and I joined our local JA camp when I was 9 years old. This was life changing. I returned to JA camp while in college as a volunteer and joined as local Arthritis Foundation staff nearly 18 years ago.

My mission is to support others with similar experiences as my own, living and thriving with arthritis. This leads us to today's topic: Restful sleep is essential to functioning well, living fully and managing pain. That pain from arthritis can make it seem impossible, and it's a vicious cycle. The worse your quality of sleep, the worse your pain and ability to function gets.

In this episode, Dr. Yvonne Lee joins us to discuss how sleep, pain and arthritis are interconnected. Some of the reasons you might not be sleeping well, and possible solutions to help you sleep better. Dr. Lee is Helen Myers McLoraine Professor of Rheumatology at Northwestern Medicine, Feinberg School of Medicine.

She is an associate professor of medicine and rheumatology and preventive medicine in epidemiology. She's also a member of the Arthritis Foundation's rheumatoid arthritis working group, which focuses on RA research. Welcome, Dr. Lee.

Yvonne C Lee, MD, MMSc:
Thank you so much, Jenn. It's great to be here talking with you.

Jenn Ziegler:
Likewise. Can you please tell us a little about yourself and your research?

Yvonne C Lee, MD, MMSc:
I would love to. I'm a rheumatologist and clinical researcher here at Northwestern in Chicago. My research focus is on pain in patients with rheumatoid arthritis. My original plan, when I think back, when I was training to be a rheumatologist, didn't actually involve studying pain. However, every day, when I went to clinic and I saw my patients, it really seemed that pain was one of the most common symptoms that patients had and wanted to discuss and address.

However, I also felt that, as rheumatologists, we tend to be very focused on inflammation. And while rheumatologists and patients to some extent equate pain with inflammation, it's not always exactly appropriate or exactly right. And so, when we reduce the inflammation and the pain doesn't go away, we as rheumatologists are sometimes left feeling uncertain about where to go. Meanwhile, our patients are often feeling maybe unheard, or also without appropriate guidance on what to do. And so, that's ultimately what led me to research pain in rheumatoid arthritis.

Jenn Ziegler:
I actually want to take it back a little further, before even you researching pain. I would love to know: Why did you choose rheumatology as a specialty?

Yvonne C Lee, MD, MMSc:
I chose it for two main reasons. One: It's one of those specialties where you really get to develop meaningful, longitudinal relationships with your patients. I feel like we get to really know our patients well, because we are one of their physicians that they're seeing most frequently. And two: From the research perspective, I thought that there are just so many unanswered questions still left in the field of rheumatology.

I think some of the other fields, like cardiology or hematology, oncology — obviously lots of unanswered questions there as well. But they seem more established. Whereas rheumatology, it just seemed like this open world where like I was a kid in a candy shop, you know, choosing what I wanted to explore. And so, it was really exciting from that way.

Jenn Ziegler:
I love to hear why doctors go into rheumatology. I think it's so fascinating and, of course, as a patient, I'm so grateful for doctors choosing rheumatology. And I always try to sell it to doctors who are in residency. But back to your research, you've done some research on sleep. Can you talk about that?

Yvonne C Lee, MD, MMSc:
Yeah. I kind of went into pain research. And then I kind of fell into sleep research. In researching pain, we found out that pain and sleep are probably intuitively very, very intricately intertwined. And when we were looking at risk factors for what may increase someone's risk for developing pain, or chronic pain, we found that sleep disturbances came up in a lot of our analyses. It was probably one of the most consistent predictors of pain. For example, one of our early studies showed that patients with RA have abnormalities in the way the brain and spinal cord regulate pain.

And our data suggested that sleep problems might be playing a role in this. However, at the time, we only had data like one time point. Thus, we couldn't say much about relationships over time, you know? What's the chicken, what's the egg? But more recently, we were able to look at some longitudinal data where we showed that sleep disturbances could predict pain 12 weeks later. So, after starting a disease modifying anti-rheumatic drug for the rheumatoid arthritis, that sleep disturbance predicted pain 12 weeks after starting that. And that does seem to be associated with enhanced sensitivity to painful stimuli.

The data seemed to be consistent with sleep problems, leading potentially to changes in the way the brain and spinal cord regulate pain. Which may lead to enhanced pain sensitivity, and ultimately, more intense pain. So, now a lot more research needs to be done in this area to kind of fully investigate that and test that. But that's what our results seem to suggest.

Jenn Ziegler:
Wow. In your experience, how common are sleep problems among people with arthritis compared to the general population?

Yvonne C Lee, MD, MMSc:
I think, as a whole, sleep problems are more common among patients with arthritis compared to the general population. Patients with rheumatoid arthritis, as you may imagine, those with well controlled disease have better sleep than those with poorly controlled disease. So, I guess the short answer is, yes, they’re more common in arthritis. But it's very common overall and very nuanced.

Jenn Ziegler:
You already talked about some of the reasons arthritis patients give for poor sleep. Are there any other common reasons that arthritis is leading to poor sleep?

Yvonne C Lee, MD, MMSc:
Pain is a big one. Just from my experience seeing patients and talking to patients, I feel like a lot of people have said that they need to get up multiple times in the middle of the night to go to the bathroom. Others say they can't fall asleep at night, because they're too busy thinking about things, like they just can't shut their mind off.

Jenn Ziegler:
I actually am a pretty good sleeper, but I don't think my sleep is very restful. I think I do get poor sleep, even though I feel like I'm sleeping, and I do have chronic pain. But what are some of the options to ease pain at night?

Yvonne C Lee, MD, MMSc:
First off, within a patient with rheumatoid arthritis or any kind of inflammatory arthritis, making sure that their inflammatory disease is well controlled first and foremost. I think a lot of patients feel that their disease is controlled enough. A lot of people compare what they feel now when they're on whatever drug they're on for rheumatoid arthritis, compared to when they first got rheumatoid arthritis. And how terrible it was at that point without any treatment.

And now they're like, "I can tolerate this." But, you know, it may still not be under the amount of control it could be. Pain with arthritis tends to happen either late at night or in the early morning hours. And so, I would say for patients with inflammatory arthritis, that is key to make sure their inflammatory disease is well controlled.
And then I guess, if their inflammatory pain is well controlled, let's say, then I think it's important to really then think about other potential causes: like obstructive sleep apnea or restless leg or any of a number of kinds of other things.

PROMO:
If you have arthritis or are taking care of someone who does, we’ve got information you can trust. Get tips on healthy treatments, plus news and inspirational stories. Learn all about arthritis and the resources we offer. Go to arthritis.org.

Jenn Ziegler:
How common is apnea with arthritis?

Yvonne C Lee, MD, MMSc:
It very much varies, depending on: A) how you define sleep apnea; and B) the specific population of arthritis that you're looking at. So, big generalization overall, I would say about 30% of patients with rheumatoid arthritis. It also varies on age, because it's more common when you grow older, more common if you have a larger body mass index. If I had to choose a number: 30%.

Jenn Ziegler:
A little bit more about sleep apnea… I've actually had this experience where I felt like I was getting poor sleep. And I felt like maybe I have sleep apnea, due to structural things in my jaw. And I remember going to a sleep specialist, and they looked at me and basically wrote me off as maybe a hypochondriac. I'm not positive, but she was like, "You're young, you're not overweight."

What would you recommend for a patient who thinks they're having possible sleep apnea, and they want to get it treated, or at least want to be tested for it, and might be written off?

Yvonne C Lee, MD, MMSc:
That is a very good question. And it actually reminds me of my experience with my husband going to a sleep medicine clinic. He has a very different situation than you, right? He's a man, and he does not have rheumatoid arthritis. But there was a lot of skepticism there, partly because he was relatively young at the time, I think. And partly because he wasn't, you know, obese. I think you really have to be your own advocate. You are your own strongest advocate. And I know that is hard.

It is hard to be your own advocate when you're the patient. But, at the same time, I just want to encourage patients to do so. Don't be afraid to speak up, don't be afraid to clarify the situation. You know, “Maybe I don't look like who you on average see in this clinic. I just want to make sure, though, that you are aware that I've had arthritis since I was a child. Arthritis can affect the jaw and structures in the oral area that may affect how I breathe. And so, I just wanted to make sure that you were aware of these things. And it'd be great if we could talk more about this and what might be the next steps in evaluating this.”

Jenn Ziegler:
When should somebody consider seeing a sleep specialist?

Yvonne C Lee, MD, MMSc:
First, you probably want to start with your primary care physician and see what they say. And they can probably help guide you on this question for you specifically. But I think in general, it's probably appropriate to see a sleep specialist if there's something that is contributing to that problem that requires a specific expertise.

For example, if obstructive sleep apnea is a potential problem, and you think that that is an issue because, you know, you've been snoring or your partner tells you you're waking up in the middle of night, snoring or things like that. Maybe anxiety is a large contributor because you can't fall asleep at night, because you're too busy thinking about other things and worrying about other things.

Jenn Ziegler:
That's fair. I feel like your primary doctor is always a good first step, and one that sometimes I forget about. Because as a child, I never had a primary doctor, I literally only had a rheumatologist. But now, you know, as an adult… I've had some amazing care from primary doctors, and of course, from my rheumatologist.

You talked a little bit about different things that people could do in terms of primary care. But what can they do on their own to improve their sleep?

Yvonne C Lee, MD, MMSc:
I think there's a lot that people can try to do on their own. Setting a sleep schedule with a fixed wakeup time and a fixed bedtime. And doing that every single day, regardless of whether it's like a weekday or a weekend. I think a lot of us are like, "Oh, we're totally sleep-deprived during the week, and so we're going to catch up on the weekend." But it's important to have a set schedule that doesn't really vary over the weeks; I think that's one thing.

To be like, "OK, it's time to kind of start winding down and resting. So, maybe budget 30 to 60 minutes to wind down, where you kind of dim the lights, unplug any electronics. Think about mindfulness practices, if that's something that you're willing and able to do. Optimize your sleeping space: blackout shades, white noise machine, if you have other noises in the background that disturb you. Cooler temperatures, like people tend to sleep better like when it's cooler, so like 65-ish degrees.

I think those are all good sleep hygiene practices. And then just good daily habits that are probably good for a lot of health things. Staying physically active, don't smoke, make sure your alcohol consumption's moderate. These things also really do help with your sleep, as well as opposed to like your general health.

Jenn Ziegler:
Those are great suggestions and things that I feel like all people should do to get a good night’s sleep. But what about supplements like melatonin, valerian or magnesium?

Yvonne C Lee, MD, MMSc:
There just isn't a lot of good data on any of these supplements, really, in patients with RA. I think the most data exists for melatonin, but the data are somewhat contradictory. And so, some research has suggested that melatonin enhances the pro-inflammatory processes and may increase inflammation. Other studies suggest that it's actually anti-inflammatory. And so fundamentally, I think, more research needs to be done in this area on melatonin.

Valerian does seem to have anti-inflammatory properties, and I know it's touted as a sleep aid. But again, unfortunately, no good clinical trials establishing whether it really works for sleep in RA. And similar for magnesium. Some studies at one time point suggesting that women with high intake may be less likely to have RA. But again, hard to say here what's the chicken versus the egg. So, unfortunately, we need more data, I guess, is my answer.

Jenn Ziegler:
Is there any research happening right now with these supplements?

Yvonne C Lee, MD, MMSc:
I don't know for sure. I know there's a lot of interest in just diet and nutrition in general. And there's definitely research there. I don't know whether there's any specific trials ongoing about these supplements in RA.

Jenn Ziegler:
Do you know of any specific risk taking these supplements with arthritis medications?

Yvonne C Lee, MD, MMSc:
I don't know of specific drug interactions between these meds and RA medications per se. I think with melatonin, the long term in general, not talking specific to RA but like long-term safety, hasn't been well established. Because there haven't been a lot of studies that have kind of followed people out and looking at long-term use.

Side effects, more from the short term, seemed to be things like dizziness, daytime sleepiness, which maybe makes sense if you're using it for sleep. Some people have talked about maybe some short-term feelings of depression. But overall, it seems relatively safe.

Valerian: also generally regarded as safe. There have been a few rare cases of severe liver injury in response to Valerian, but those are rare. Magnesium: also generally is safe but, you know, I think in specific populations, you may want to be a little bit more vigilant. For example, if you have kidney disease, the kidney is usually pretty good at excreting excess magnesium. But if you have kidney disease, you may want to think about it a little bit more carefully, and in general, definitely don't exceed recommended doses.

Jenn Ziegler:
What about medications and prescription sleep aids?

Yvonne C Lee, MD, MMSc:
They're definitely something to think about potentially. I would normally start with non-pharmacologic stuff first. I would highly advocate for non-pharmacologic approaches first, particularly cognitive behavioral therapy for insomnia. But in terms of the medications and prescription drugs, I think it largely depends on: A) how long these sleep problems have lasted; and B) how distressing they are to you. If it's been relatively short term and they're not terribly distressing, I think people could generally start out with sleep hygiene. And a lot of the short-term changes kind of resolve on their own because they're situational and the situation resolves.

I don't think you necessarily need medications or pharmacologic sleep aids unless they're severely debilitating or distressing. In which case, I would definitely say, talk to your primary care about that.

PROMO:
Get tips to help you take control of arthritis and put your mind at ease with the Arthritis Foundation’s free e-books. They’re packed with trusted information from the experts on all kinds of topics. See the full menu at arthritis.org/ebooks.

Jenn Ziegler:
Can you explain the cognitive behavioral therapy and who should try it to help with sleep?

Yvonne C Lee, MD, MMSc:
It's the preferred treatment for chronic sleep problems in adults. And it's been endorsed as first-line therapy by multiple medical societies and guideline panels. And it also teaches kind of cognitive approaches to deal with, you know, the thoughts associated with not sleeping.

Maybe your expectations are a little too high for that. Maybe we should kind of start incrementally improving sleep as opposed to jumping, you know, let's say for four hours to eight hours. And so, it addresses kind of these thoughts and behaviors. And pretty much I would recommend it for anyone with sleep problems, because I feel like it's a good base.

Jenn Ziegler:
Where could someone go to get cognitive behavioral therapy?

Yvonne C Lee, MD, MMSc:
It very much varies depending on where you live and what the services are available to you in your location. I think this is again where you'd have to go to your PCP and/or your rheumatologist and ask them whether they have specific people that they know of to refer you to in order to do that. I would first start by asking your PCP or rheumatologist whether they have a known place to refer. And then, if not, sometimes you can find things online to do.

Jenn Ziegler:
Thanks, Dr. Lee I think that is a great recommendation. What other kind of treatments are there for insomnia or sleeplessness due to pain?

Yvonne C Lee, MD, MMSc:
I think then you're thinking about medications. I generally advise doing this in conjunction with cognitive behavioral therapy, not excluding it; it's not a substitute for that. Are you having problems falling asleep? Or are you having problems staying asleep once you fell asleep? Or are you having problems with both? Or do you have obstructive sleep apnea or restless leg? I think those all need to be taken into account, as well as your age, what other medical conditions you have and things like that.

Jenn Ziegler:
Thank you. I actually had a question earlier on that I skipped. But I think it's very interesting, and I would love to hear your answer. Why does pain seem to be worse at night?

Yvonne C Lee, MD, MMSc:
I think one reason: It could be that if you have inflammatory arthritis such as RA, that inflammation tends to peak during kind of the end of the night or early morning hours. So, if you're referring to that part of time in night, it could be due to just inflammation levels peaking in your body and that inflammatory pain kind of rubbing up.

And then, in addition to or aside from that, I think the other thing is: There tend to be less distractions at night. You know, during the day, you're at work, or you're dealing with your kids or whatever. But at night, it tends to be when people have a little bit more downtime, and they don't have these distractions. And that tends to also potentially be a factor for why pain is worse.

Jenn Ziegler:
So true. I know, for me at the end of the day, it's the rush, rush, rush, and the go, go, go. And then, by the end of the day, my ankles are like done, they're just done. They're like: What did you do to me today?

Yvonne C Lee, MD, MMSc:
Like, you have to, right?

Jenn Ziegler:
My whole family, we have a whole routine before going to bed. And my mother-in-law lives with us. She actually is the one that suffers from insomnia the most. We have a 5-year-old. So, since he was a baby, he has had a sleep schedule, and we all kind of follow the same thing of, you know: dinnertime, wash hands. And from there, it just kind of goes on: We might have an hour of reading or playing or watching TV; and then it's bath time; and then brush your teeth and say good night to everyone, including the three dogs.

It's like an hour-long schedule (laughs), but it helps. And by the time he's in bed first, you know, he's ready. I truly believe in having a routine, and it helps, and yeah, on the weekends, it's the same thing. We don't really even know the difference at night, whether it's Friday or Monday.

Yvonne C Lee, MD, MMSc:
Yeah. I can so relate to that because I have a 5-year-old as well. Although I would say probably our regimens are not as good.

PROMO:
This spring, Walk to Cure Arthritis — to help power the mission of the Arthritis Foundation, which empowers people to take on the daily challenges of living with arthritis. Let’s walk – and conquer – arthritis together! Find an event near you at walktocurearthritis.org. And register today!

Jenn Ziegler:
We do have one more part, a question from social media. What is your best trick for getting a good night's sleep?

Yvonne C Lee, MD, MMSc:
It's not a good trick, it's not something I recommend. (laughs) It's being incredibly sleep-deprived, so sleep-deprived that I fall asleep within five minutes of hitting the pillow.

Jenn Ziegler:
I love that! Like, just the specialist is honest in their own…

Yvonne C Lee, MD, MMSc:
Well, I guess it goes to one of the components of CBT. There's a sleep restriction part of it, where it talks about restricting your sleep to kind of get that sleep drive going. I'm not recommending that people deprive themselves of sleep without guidance from a professional. (laughs)

Jenn Ziegler:
Some of the responses from social media. Raven, she said to stretch, soak in a tub. We did mention bath time, that kind of counts. Drink water, that's another huge one in my household. If you're having trouble sleeping, you know, getting in that good routine of sleeping helps you in the future have better sleep.

And then we have another response from social media: Pilates. We do yoga, we do other things. Someone said magnesium. Cut down on caffeine. And warm shower. And exercise. And stop any electronics an hour before bedtime. I like that one. Someone said, “I sleep with a heating pad for my hips and shoulders.” And then also somebody said, “Six pillows strategically placed, and then not moving an inch once the right spot is found.” (laughs) I can relate to that one, too.

I had my hips replaced about 14 years ago. Before that, though, I literally had to have six pillows strategically placed, and did not move to be able to sleep without too much pain. So, I can totally relate to that one as well. And then, one more person said hot showers and relaxation. So, that goes to the cognitive behavioral therapy, that mindfulness before bed. And I think that is key, too.
I wanted to go over the top three takeaways from this discussion. What were your top three takeaways?

Yvonne C Lee, MD, MMSc:
I think my top three takeaways would be: First, that everyone is unique in terms of what type of sleep problems they have and the potential causes. And then how much it bothers them, too. And as such, I think there is no one-size-fits-all management plan.

That said, I think that goes into my second point, which would be: I do think cognitive behavioral therapy for insomnia is generally a good base for management. And I would suggest that people who have had sleep problems for some time, let's say greater than three months, do discuss this with their PCP or rheumatologist, and see about finding a way to get access to this.

And then I think lastly, I think it's about the relationship between pain and sleep. And alleviating pain can obviously improve sleep. I think those would be like three takeaways.

Jenn Ziegler:
Thank you. Those are great. And I completely agree with those.

Dr. Lee, thank you so much for joining us, for answering all these questions and just providing your expertise when it comes to sleep and arthritis. I just really appreciate the opportunity to connect with you.

Yvonne C Lee, MD, MMSc:
Thank you so much. Thank you and the Arthritis Foundation for sponsoring this. And it was really enjoyable talking to you. You made it a very enjoyable experience. So, thank you.

PODCAST CLOSE:
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. People like you. For a transcript and show notes, go to arthritis.org/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!