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it's not just joint pain let's talk about fatigue, cognitive dysfunction and mental health with rheumatic disease
General Education, Podcast

It’s Not Just Joint Pain: Let’s Talk about Sleep, Fatigue, Cognitive Dysfunction, and Mental Health with Rheumatic Disease

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Summary:

On episode 148 of The Arthritis Life Podcast, Cheryl and Eileen dive into their “It’s Not Just Pain” presentation from the American College of Rheumatology’s annual Convergence Conference. They share practical tips for improving fatigue, sleep, cognitive dysfunction (“brain fog”) and mental health challenges that often accompany diseases like rheumatoid arthritis. 

Nutrition is explored as a supportive tool, with insights into how certain eating patterns can impact fatigue and overall health without falling into food shaming or misinformation. Cheryl and Eileen stress the value of self-advocacy, working with a multidisciplinary team, and accessing reliable resources to navigate life with confidence and care.

Episode at a glance:

  •  Mental Health and Support Groups: Cheryl and Eileen explore the transformative power of support groups, not only for attendees but also for those facilitating them. They discuss how mental health practices, like therapy and mindfulness, can supplement traditional care and provide emotional resilience.
  • The Overlooked Impact of Sleep: Sleep disturbances, often dismissed as a symptom of rheumatic diseases, are addressed with actionable advice, including the need for sleep assessments to diagnose conditions like sleep apnea.
  •  Nutrition’s Role in Managing Symptoms: Nutrition is examined as a key player in managing fatigue and overall well-being. Cheryl and Eileen discuss the benefits of a Mediterranean-style diet, the pitfalls of food shaming and misinformation, and how a positive, individualized approach to diet can support health without fostering food fear.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Eileen Davidson “Chronic Eileen”

Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research – Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints,  Healthline, Chronic Eileen or can be found being a mom to her son, Jacob.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Cheryl:  00:05

Hi everyone. I’m so excited today to have Eileen Davidson, Chronic Eileen, not for the first time, on The Arthritis Life podcast! Welcome.

Eileen:  00:15

Hi! Thank you for having me again. It’s always a pleasure to be here. And yeah, we have a lot to say, so I think it’s appropriate that we keep these conversations going. 

Cheryl:  00:25

Yes, yes. And today, it’s going to be a little different than my typical episodes on The Arthritis Life podcast, because we are we have a very specific goal today, which is to review a talk that we gave with a multidisciplinary panel last November 2024, at the American College of Rheumatology’s annual Convergence Conference. And the talk was called ‘It’s not just joint pain’. Can you tell me a little bit, Eileen, what inspired you to create this session?

Eileen:  01:00

Well, it is a little bit of a story, because it goes back a few years. I have been participating in research since 2018 particularly with the Arthritis Research Canada Patient Advisory Board, and so I’ve had the opportunity to attend a number of the rheumatology conferences, not just the American College of Rheumatology, but also through another organization and through Arthritis Research Canada, I have attended the Canadian and the European one, either online and in-person. So, I felt like I have started to sort of see trends over the years, where research is focused and where it isn’t focused. And as a patient living with a rheumatic disease, where I personally would like to see some more research on. 

And then, not just that, as a patient advocate, and like you, somebody who runs a support group and who does, you know, lots of content creation, we see trends in what other patients are saying, because they’re very similar to what we’re saying. And, you know, when I write an article on fatigue, it’s always the top one. When I write or talk about brain fog, people are just like, I didn’t realize this is even part of the condition. And you start to realize you’re hearing these things more and more. So, then, you realize there is a huge gap in not just the research, but the knowledge, understanding, and resources for certain areas of living with a rheumatic disease. 

And also, living with a rheumatic disease, we’re all going to say it’s a lot more than just joint pain, so highlighting those symptoms that are extremely debilitating or hard to deal with every day, and then what might help them. So, I had been invited to speak at ACR before on multiple different things with researchers, and I like to set little goals for myself and just try and do things, because that was something that I actually used to really struggle with, living with mental health throughout, like, my teens and my 20s. I didn’t really set goals or do things, you know, to, I guess, better myself or learn more. So, I was like, I’m going to learn to submit a session. And I’m going to submit a session on what I think is missing. And I’m going to invite some really cool people that I know to be on the session, because they have a lot to say about the topics that I want to talk about. And so, I created ‘It’s not just joint pain’, demystifying difficult symptoms of rheumatic diseases often neglected for myself and also for my community.

Cheryl:  03:47

That’s yeah. And one was so funny, because I’m so passionate about these things as well, and I’d used that phrase before, ‘It’s not just joint pain’, and I found the same thing you did that on social media. People are like, “I didn’t realize that, like, I thought my fatigue was unrelated,” or, “Maybe I’m just doing too much,” you know. So, I think you’re, I mean, I obviously preach, you’re preaching to the choir, recruiting me to be part of this. And I’m just, before we go into today, today we’re going to be covering, like, the five — our biggest takeaways from the five areas that we discussed, which were, you know, sleep with rheumatic disease, fatigue and rheumatic disease, cognitive dysfunction, mental health, and then the role of nutrition. And we kind of interwove comorbidities throughout that as well, like coping with multiple comorbidities. 

And before, before we do that, I’m just going to give credit to this, the other speakers. And it was just, I didn’t even try to get all of us together, honestly, for a podcast, because I just know our schedules are too variable, so that maybe Eileen and I will debrief. But we had Dr. Ayman Askari, who’s a rheumatologist in England, and Dr. Susan Bartlett, a clinical psychologist and professor of medicine at McGill University and adjunct at Johns Hopkins; she’s a psychologist. And then me, and then Christina Montoya, who is a registered dietitian in Columbia and Canada. And then, Dr. Daniel Whibley, who is an assistant professor in the Department of Physical Medicine and Rehab at University of Michigan, and he has a, his background is in being a physical therapist as well, and he’s really a sleep specialist. 

So, we brought, you brought together, you assembled like a superhero team of experts to really delve into these, what’s called in the OT world, occupational therapy world, call them extra-articular symptoms or things that don’t relate to the joints but are related to the disease. So, let’s start with the one that people would mention is difficult for them most often is fatigue. So, what, you know, we delved into the science of what is the relationship between rheumatic disease and fatigue. Unfortunately, even today, in the year 2024, there are still rheumatologists who will say, “Oh, your fatigue isn’t related to your RA or your AS,” even though there’s this wealth of evidence that it can be. So, you know, we outlined a bunch of research and also talked about the impact of fatigue on quality of life, and also, what were the effective treatments from our different perspectives. So, what were some of your takeaways from the fatigue section of this talk?

Eileen:  06:32

To be honest, my main takeaway with fatigue and also cognitive dysfunction was mostly that it really highlighted a lack of research and treatments and understanding and knowledge and resources when it comes to these, just from going through making the resource guide and then also pulling the information that people do know, because there’s still so much that needs to be known, and the treatments are difficult because of the condition or the symptoms themselves. It’s no surprise to me that exercise was talked about first and foremost when it comes to alleviating or helping these symptoms. But then, it also reminds me how hard exercise is to conduct in the first place when you have fatigue or cognitive dysfunction. 

So, my take, my biggest takeaway was, wow, we need to keep pushing for more resources, more information, more support on especially fatigue and cognitive dysfunction. But then, it also reminded me how powerful exercise is. And not just for just fatigue, but it was the one thing that we could do that would help all of the symptoms we were talking about, and just how important it was. And then, also listening to, like, your testimonial about how much strength training helped you, previously how much exercise really helped me. But it’s so hard to find the consistency, so especially when dealing with, you know, new diagnosis of comorbidities and how that affects my fatigue. So, how my sleep has been affected and everything, too. 

But, yeah, I think my biggest takeaway was definitely exercise is always the number one recommended treatment other than our actual medications. And the huge lack in or gaps in around fatigue and cognitive dysfunction. And, you know, just hoping that the session that we held there, you know, flagged that to some researchers or clinicians. And then, one thing that I thought was really important to bring up was that one of the researchers had told me that fatigue had been mentioned at OMERACT around 20 or so years ago, but it wasn’t until 2023 that the first guidelines anywhere came out on rheumatic diseases. So, it took, like a good 20 years for —

Cheryl:  09:38

Can you tell them what OMERACT is?

Eileen:  09:41

Oh, gosh, it’s Outcome Measurements — and what was it again? Arthritis, Rheumatic Diseases. I can’t remember the exact name.

Cheryl:  09:51

Yes.

Eileen:  09:52

In Arthritis Trials. 

Cheryl:  09:54

Yes. There we go. I know, I’m bad at remembering these as well. Okay. Their outcome measures refer to the standardized set of metrics used to assess the effectiveness of treatments and arthritis developed by the outcomes measures and rheumatology initiative. Say that five times fast. Oh, OMERACT is actually a full non-profit organization as well. I actually didn’t realize that. I thought it was part of a different organization. Okay. Anyway, point being, it is about figuring out ways to measure outcomes, aka, and outcomes is just a fancy word of saying, you know, like, are you feeling better? How bad are you feeling in? Which ways are you feeling bad or good?

Eileen:  10:36

Right. So, they have been doing lots of stuff in patient identified issues for a while. And Susan Bartlett, who was on our panel, she is an arthritis researcher from Arthritis Research Canada, that I have actually worked with a couple times on studies involving mental health and arthritis, and she has also spoken a lot about fatigue, how much that is a call for anything for patients, really. And she was the one who told me about how OMERACT identified that 20-so years ago, but it has taken this long, and that I have heard before research can take up to 17 years before it actually makes clinical practice. Yeah, so in a sense, also like going back to your first question, why did I do this? To speed things up a little bit, maybe. Flag how important this is to, you know, patients. Feel like I want to make a difference somehow.

Cheryl:  11:48

Yeah, and you are definitely making a difference. And, you know, just a couple of things I would add from my takeaways, definitely that it’s, you know, kind of incredible that it didn’t, it took until 2023 for any rheumatology association to come out with an evidence-based guideline for fatigue in rheumatic and musculoskeletal diseases. But it does exist. And I’m going to link it in the show notes. It’s also linked in your resource guide. When we say resource guide, that’s like a master list of all the resources relevant to this presentation that Eileen put together that’s super, super helpful. And I just wanted to share a couple, you know, I think when we hear, you hear all the time, “If you have rheumatoid arthritis, you should exercise. Exercise is good,” and it’s hard to — or it’s hard to actually get yourself to put it into practice, because a) you just get an irritated hearing all the time; and also, you’re like, how helpful could it really be? 

But I think when you drill down into the specifics of some of these studies, it helps you — for me, at least — it helps me feel more like, okay, wow. This is a this is a big deal. One is ‘A randomized control study on the effect of exercise on sleep and fatigue in rheumatoid arthritis’, and they had one group of people with RA randomly assigned to not exercise, and the other group assigned to exercise. And they not only saw significant improvements in pain and fatigue, but it also improves sleep quality and stiffness and health HAQ scores, which is like a general like quality of life, like, health-related quality of life, which is amazing. 

And then, another one did a randomized control trial of a patient specific exercise program. It’s important to note, this was people who were given the guidance by like a trained physical therapist. They the people assigned to the exercise intervention, not only had better fatigue scores, they had significant improvements in C-reactive protein levels, so it’s actually affecting the inflammation itself. So, yeah, and I think so that’s the why — it’s the how that’s hard. As a patient, how I personally have found that the two things that really move the needle for me in terms of actually implementing exercise and being consistent with it are having some sort of external accountability, whether that’s a group or a someone I’ve signed up for personal training sessions for. 

Eileen:  14:23

Yeah, I realized that’s what I’m missing, and I need to find. Yes, there’s actually one thing I’m going to quickly say about, the CRP thing before you —

Cheryl:  14:33

Oh, yeah. Go ahead, yeah. 

Eileen:  14:33

Is that research has actually proven that exercise helps our medications work better. So, it’s no wonder our CRP would go down when we start exercising, because it’s actually helping our medications work better.

Cheryl:  14:53

That’s amazing. Yeah, and, and, I think the biggest thing is just figuring out what’s going to work for you. I mean, the only other thing that works for me is doing it first thing in the morning, or not, like, first first. If I have to, I’m one of those people that has to eat first thing and but doing it in the morning before I can get distracted by the rest of the day, that really, really helps me. So, you know, we you asked the question to the panel, how does your profession, you know, research, address fatigue. And fatigue, managing fatigue, along with managing pain, is part of what is called self-management, which is definitely recommended for all chronic illnesses. 

It’s self-management is simply learning the tools to manage your symptoms and your condition on a daily basis. So, you know, OTs, occupational therapists, can also teach you, not only these things like exercise, which can improve your fatigue levels, but also what we call compensatory tools or workarounds, like learning energy conservation strategies, ways to save energy throughout the day so that you can accommodate for maybe any lingering fatigue. So, it’s not necessarily that you’re gonna get your fatigue down to zero, right? You can move it down by exercise from its high point, but then the remainder of it, you might have to accommodate for it. So, yeah, anything else about fatigue before we move on to brain fog/cognitive dysfunction?

Eileen:  16:29

Just the highlighting, like, how important that exercise was, and also how we pick these symptoms, also, because they all kind of tie into each other. So, when you have bad sleep, more fatigue; when you have more fatigue, you have more cognitive dysfunction. And then, when you have more cognitive dysfunction and fatigue, you have worse mental health. And it all just kind of goes around and how the, I think, like what you just spoke about how occupational therapists can help you with fatigue and energy conservation, but OT can help you with everything that is talked about on through this panel discussion, and that is why I definitely wanted an occupational therapist to be on the panel, because I do a hundred percent consider them the unsung hero of any rheumatic condition. 

And yeah, I would say I’ve kind of already talked a little bit about my takeaway with cognitive dysfunction and tied in with fatigue, but I guess as we move into cognitive dysfunction, my biggest takeaway was when Daniel Whibley told me that cognitive dysfunction is actually separate from fatigue. They’re not the same thing. So, I’m like, but I have cognitive dysfunction when I’m most fatigued, like, you know, so I would associate them being connected. I would have think that my brain is fatigued, so I’m having cognitive dysfunction. But he would be the better person to explain, you know, what exactly is cognitive dysfunction. It’s not really that well-known. 

And like when we talk about this resource guide, which is, we’ll dial back a tiny little bit, I’ll explain what the resource guide is, is we went on the internet and found as many of the resources we could on fatigue, cognitive dysfunction, sleep, exercise, whatnot. And if it was either involving, like, a clinician of some kind or an organization, we put them down on this my website. And so, it’s a ton of information for patients and clinicians to be able to go to when they’re feeling stumped on these particular symptoms. However, when we were searching the internet for cognitive dysfunction resources and references and everything, there’s such a tiny, tiny amount, which is a huge gap.

Cheryl:  18:56

Yeah, yeah. Yeah, they’re actually one of the few articles I did find is called ‘Cognitive implications of rheumatoid arthritis, a call for comprehensive care and research focus’. That’s from 2023, so one year ago. So, they’re saying a call to action, like on the provider side, to figure out, like, hey, we need to address this in our patients. And that is step one, right, identifying the problem and clarifying that it’s related to the condition. This is, this was in the Journal of Immunity, Inflammation and Disease. Interestingly, so it’s not a rheumatology-specific journal. But obviously, it overlaps with rheumatology. And sorry, I didn’t mean to steal your train of thought. I just thought that was you were kind of present — you were presenting with the call to action as well. And it’s definitely —

Eileen:  19:47

No, I think, yeah, bringing up that study, because that is literally the only study that we could find on cognitive dysfunction and rheumatoid arthritis at the time. Mind you, we didn’t do that as an extensive deep dive as like a researcher could do, because they can go through a whole different kind of data bank. But there, that was the only resource or reference that we could find on it. And there was only one resource, other than my brain fog essays that I’ve written, right?

Cheryl:  20:17

Oh, and then I found one, and I was like, oh, there’s another one. And then, I realized it was actually an abstract being presented at the conference, like the day after our presentation. So, it was like, there’s was neuropsychological evaluation of cognitive impairment in patients with rheumatic diseases in general. So, again, it’s like, this is, like, almost like the final frontier, right? Of addressing these extra articular symptoms is understanding — yeah.

Eileen:  20:46

Sorry. I just blurted it out. I was like, I hope they were at our session.

Cheryl:  20:49

I don’t know, yeah, good question. We should follow up with them. And, you know, I think, again, I didn’t know for so many years that any sort of brain fog that I was having was related to my rheumatoid arthritis. And I think you’re right, like Daniel said, it’s not that it tracks perfectly with fatigue or overall disease activity. It’s still unclear the mechanism of how this is happening. I think one of the most important takeaways for me was remembering when it comes to any of these, this, especially cognition, is that the SPACE acronyms, SPACE symptoms like sleep, S is sleep, P is pain, A is affect or emotions, C is cognition, and E is energy or fatigue. They all — this was, you know, Dr. Afton Hassett and the other researchers at Michigan, University of Michigan, proposed this acronym to say, based on research that all of these five variables are very interrelated. So, if you get poor sleep, you’re going to have worse pain, worse mental health, worse cognitive abilities, worse energy. But the good news is, if you’re going to have if you have better sleep, it bleeds over into improvements in the other areas. 

So, I always say that when I’m doing my Rheum to THRIVE groups or just doing any presentations, I always say that that’s a good news/bad news situation, right? Because the good news is that they’re interrelated, and that if you can improve — if one of them is poor, you can try to improve it by improving a different one. But the bad news is that something bad in one area, like, let’s say your fatigue is really bad that day, can lead to dysfunction, or, you know, bad stuff in all the other areas. So, I think just remembering that as a construct has been so helpful for me. And what Dr. Afton Hassett says is, if you’re having a hard time, let’s say with your pain, think about whether or, let’s say, affect or emotions, think about whether you can come at it sideways. That’s what she called it, like, where you, instead of just thinking, “What are my mental health tools?” or, “What are my pain tools?” can you turn up the dial or improve one of the other symptoms, like, can you improve your fatigue by exercising? Or can you improve your sleep that night? Maybe that will help address whatever is going on with you. 

So, I think that’s a huge just overall takeaway for me is the interconnectedness of everything. These are somewhat different, Whack-a-Moles, if you’re playing the game Whack-a-Mole. But they’re also overlapping quite a bit. They’re kind of tangentially related. I will say that in that 2024 abstract from the conference, some level of cognitive dysfunction was found in 86% of patients with rheumatoid arthritis. This is the study with by Dr. Gabriela Anais Madrid-Lopez, and Maria Corral-Trujillo. So, this is really — this is from the University of —

Eileen:  23:58

It’s in Mexico. And there is something that I’ve noticed because I went through so many of the abstracts, and I mean many, literally all of them, all 181 pages, like —

Cheryl:  24:09

You get a badge for that.

Eileen:  24:11

I know. My back really hurts. I can’t wait for my RMT. But anyways, one thing I noticed when I was pulling all my favorites, or the ones that I would actually read, because I didn’t read the ones that were way too scientific. I noticed how often Mexico kept popping up for really interesting studies, like, they had one about premenstrual dysphoric disorder. They also had, I think, a perimenopause one, and then they had the cognitive dysfunction one. There were some others. They’re all just really good, interesting studies that were really interesting to me as a patient living with it. And I found like, wow, this needs to be talked about more. So, University of Mexico, I believe it is.

Cheryl:  24:54

Yes, I think so. Yeah, yeah. Nuevo León Monterrey. Nuevo León Mexico. Yeah, we’ll put links to all these in the show notes as well, or on the Resource Guide.

Eileen:  25:12

I noticed they had a lot of really cool studies this year. So, I think Mexico is a place to look out for. And I wonder how they identified these studies, like, do they involve patients? Is it like a patient advisory board that they have? Or it could also be that there’s researchers living with the condition? So many questions. Unfortunately, I didn’t have time to find them in the poster hall and talk to any of them. 

Cheryl:  25:40

Yeah, I only, I only found, I found one very patient-centered research poster from Columbia, which was about shared decision making. Yeah. But, you know, I there was a study in 2020, that showed the benefits of exercise in patients with rheumatoid arthritis, a randomized control trial, again, a different controlled trial, this one also showed a positive impact of exercise on cognitive function in rheumatoid arthritis. So, again, just under scoring, you might get annoyed at hearing people say exercise all the time for rheumatoid arthritis, but it really is. It’s not just about developing muscles to support your joints. It can be to improve your cognition and your fatigue levels, and these things are what get me out of bed, sometimes to get me onto the exercise bike or into the strength training. But it’s amazing how much you can know this is important when still not do it sometimes, just because humans are complicated, right?

Eileen:  26:40

Absolutely. And it goes back to talking about SPACE acronym again, like an area that I want to fix or work on is my sleep, because in the winter, I go to bed too early, so my sleep has been good, but the problem is, I’m waking up at one or two o’clock in the morning because I’m going to bed too early. So, that’s creating more fatigue throughout the day for me. And then, when I think about exercise, it’s also because this is just being a, you know, somebody who lives with a condition, knowing that when you start something, or you do something, you’re going to get benefits in one area and then pay for it in the other. So, one thing I’ve noticed when I start to exercise, my cognitive dysfunction can actually get worse because of post-exertional malaise. 

Cheryl:  27:24

Interesting.

Eileen:  27:26

And that is common with fibromyalgia.

Cheryl:  27:29

Well, I do sometimes, and I always thought was maybe that I’m overdoing it. I don’t have fibro, but I do get, my fatigue can get worse sometimes, if I’ve overdone — 

Eileen:  27:39

Yeah, it does. It gets worse before it gets better. So, it’s not like we can just okay, we’re going to start exercising. Because if you’re like me, busy single mom trying to work, and then you’re really okay, I’m going to exercise every day, but then I’m going to miss a million meetings. So, it’s like, you actually have to plan to do these things. And that’s where you’re going back to the energy conservation and OT and all that, which can really help. And then, just like watching them, going through resources and learning those little steps that you can take so that you can improve fatigue or cognitive dysfunction, can get moving easier, switch diet to restrictions or things that you need to go through.

Cheryl:  28:22

Yeah. And just like with fatigue, we have compensatory measures that are not about improving the underlying variable, but about accommodating for it or working around it. We have those for cognition too, right? So, if your working memory is the issue, you’re forgetting things, external reminders, just the same things we would do with somebody with a brain injury, to be honest, you know, having external supports and task simplification or delegating things, chunking tasks out so that you’re not getting too overwhelmed. Those are all things that can be worked on. 

And I know they’re actually being done often now in post COVID recovery, or people who have long COVID. Because brain fog, for better, for worse, there is more research out there on cognitive dysfunction and brain fog because of long COVID, because that’s a pretty big symptom. Fatigue and brain fog are big symptoms of that. So, the last three, I’m trying to be mindful of times, we’ve got about 20 minutes, are mental health, sleep, and nutrition. So, now this, we don’t have enough time to cover all these in the biggest and the most depth, but I know you and I are both really passionate about discussing, you know, the role of mental health in rheumatic disease. What were some of your takeaways from that section?

Eileen:  29:38

I think one of the biggest takeaways from the Mental Health section was how necessary it is in the beginning of a diagnosis, not just if the patient has a diagnosis of anxiety or depression, but because of the grief process when being diagnosed with a rheumatic disease, all the changes whatnot. And shockingly to me, I find it quite interesting how there are people with rheumatoid arthritis who do not have depression. That shocks me more than the fact that a lot do. I want to know what’s going on with those people that don’t have it, but. 

Cheryl:  30:23

They might be the ones that are going into remission right away. I mean, there are so many that do, you know? 

Eileen:  30:27

Yeah, and it’s really important that people understand that not everybody’s rheumatoid arthritis is the same. There’s different, whole bunch of different variations; mild, moderate, severe when you’re diagnosed. Also socioeconomics, I can go on. But the thing is that even if they don’t have a diagnosis of anxiety or depression, just a grief counseling or something can be so beneficial to somebody, because a rheumatic disease is such a life changing experience. And it’s not even just like going to a psychiatrist or a therapist. It could be a social worker, because social workers cannot just help them with the mental health side but, you know, resources and supports that they might need to help them live a healthier, better life with a rheumatic disease, like if they need disability parking pass. They know how to help get the help them get that. Or if they need to go on to disability, they can help them with the paperwork and things like that. And just how even that, having that kind of support is really important for our mental health. But I think, yeah, that would be my biggest takeaway, is that it should, mental health support should be offered to everybody who’s diagnosed with a rheumatic disease. And not just at the beginning, but throughout, because it might at first be too overwhelming. 

Cheryl:  31:58

Yeah, I think that’s a really good point. I only have two other things to add. One is I have this little soapbox about anxiety as well as depression, because I don’t, I don’t tend to get depression, but I definitely have clinical anxiety, right? So, a lot of times there’s awareness. There’s been a lot better awareness of depression in the role of people with chronic illnesses. But I think anxiety can kind of hide in plain sight for lack of a better word, because anxiety can make someone almost, like, hyper-functional, like, kind of a perfectionist, like, “Oh, I’m just gonna, like, I’m gonna, you know, check my symptoms. I’m gonna do all this stuff.” And, yeah, yeah. So, we, and you can have both. We can have anxiety and depression, for sure. But 20% of people with rheumatoid arthritis have a diagnosed, doctor diagnosed anxiety disorder. 33% of people with psoriatic arthritis report at least mild anxiety. 

And the Arthritis Foundation did just a survey a couple years ago, and it said 66% of people with any form of arthritis reported anxiety or fear in the last 77 days, which, again, yeah, you’re like, who wasn’t anxious or fearful? And people with ankylosing spondylitis are also more likely to have anxiety. So, just know you’re not alone if you’re feeling anxious. And I wish that’s one thing — I mean, there’s very, I’m trying to live my life with, like, no regrets, but that’s one thing I absolutely would have done earlier if I could do it again, is go to therapy earlier, get mental health support, whether that’s a social worker, whether that’s a counselor, whatever. 

You know, I joke sometimes I’m like, you know, the best I had done when I was pregnant was not take a birthing class which ended up being totally useless, because I had to have a C-section, which I was breached. I should have gone to, like, to therapy during that time, because it was much harder on my mind than my body, transitioning to be a mom. But yeah.

Eileen:  33:46

Back to also the therapy and how to access it, and my key takeaway, because this has to do with yours before you jump onto your next one, is how they highlighted that occupational therapy is also a great way to get cognitive behavioral therapy, which is always brought up all the time for people when they’re struggling with their mental health, being what I’ve seen the most beneficial treatment, other than, you know, medications. So, highlighting the importance of the multiple disciplinary team and the importance of occupational therapists and how they help not just with the physical side of living with a rheumatic disease, but also the mental health side.

Cheryl:  34:27

Yes, yes. And the third wave. There’s a therapy that I talk about a lot on this podcast called Acceptance and Commitment Therapy, ACT. And acceptance is not a bad word in the in the case of ACT, and that’s very evidence based for chronic pain as well, and it’s considered a third wave of cognitive behavior therapy. But it feels to me very different than traditional CBT. And that was the only other thing I would add to the mental health section, is just that they — I don’t think I had time to say this in the, I can’t remember if I did. 

But I gotten some resources on the importance of or the benefits of support groups and support programs, as I know both you and I are very passionate about that. And you know, there are many different, that is actually something that’s very well studied, is the benefits of support programs, particularly ones facilitated by somebody with some degree of training in facilitating support groups. And they’re again, things like kind of these open Facebook groups can be great, but a support program where you’re actually in real time, whether it’s in real life or online, interacting with other people with the same condition are super, super beneficial to people’s mental health, as well as an adjunct to, you know, additional therapies and such, so.

Eileen:  35:46

And you know, what they don’t talk about is, they say support groups are beneficial for the person going to them, but as a person who runs them, they’re also very beneficial, me, as a person who runs them. So, that’s because you’re saying, you know, there’s things like that you can do for your mental health that you can’t get that from a dog. 

Cheryl:  36:06

A hundred percent. Well, in sleep, this was definitely Daniel’s area to shine in terms of he provided a lot of resources on the prevalence of sleep disruption in rheumatic diseases across the board. What were some of your takeaways from this section?

Eileen:  36:25

So, Daniel provided so much information, it’s hard to narrow down what the main takeaway was because he, on the resource guide, you can find articles. I made each researcher kind of type out what they wanted to say. And Daniel just went to town, and he basically wrote us a book on how to, you know, understand sleep issues. But he just, he described it so perfectly, and talked about, like, the different issues. And I think the biggest takeaway that I’ve had — and this isn’t my first time working with Daniel, too. I partnered with him in 2019 when I first, my first ACR, so I brought him back so that we could do another session. 

But the biggest takeaway is that sleep is not brought up enough, and it’s often just brushed off as part of our disease when there are things that we can do or have done to us to help us with our sleep. Like, what if we have sleep apnea and need a CPAP machine? So, it’s really important for rheumatologists to recommend their patients who are struggling with sleep to maybe go get a sleep assessment of some kind to diagnose any underlying sleep issues, because that is actually quite prevalent in people with rheumatic diseases. And even from my own experience, when I talked about sleep, I was kind of just told it was part of this, you know, the disease. And probably is, but there is a definite need to not just brushing off these symptoms and saying it’s just part of the disease, learn to live with it. 

It’s like, well, how do we learn to live with it? You have to help us with that. And like, do I need others to help me with that? So, I think just my biggest takeaway was that even though we spoke six years ago at ACR about it, it’s still not, you know, being addressed enough and then, like, when he also — some estimates of the sleep disturbances or problems in people with rheumatic diseases was intense. Rheumatoid arthritis is up to 70%, osteoarthritis is 80%, fibromyalgia 90%. I have all three of those. No wonder I suck at sleeping, which is weird because I try and practice it every day, multiple times. Sometimes you think I’d be good at it.

Cheryl:  39:07

Yeah, yeah, no, but it’s not that — part of it’s out of your control, right? And that’s one of the biggest things I tell the people in the support, my, you know, support program, and I teach in the self-paced course of Rheum to THRIVE is if you are feeling the inadequate that you’re having inadequate sleep, or you’re feeling extremely fatigued. It’s very, very important to rule out a sleep disorder, because people with rheumatoid arthritis specifically are much higher risk of a sleep disorder, even if they have no other risk factors. So, even if you’re not overweight, you don’t smoke, you don’t snore, all those other things that can make you more likely to have apnea, just having rheumatoid arthritis makes you much more likely to have a sleep disorder. So, if you can, if you have something like sleep apnea, that can actually be partially fixed with like a CPAP, that would be, you know, you want to do that, right? You want to fix anything that could be fixed.

Eileen:  40:01

Yeah, but you can’t get a CPAP machine unless you are being tested for the need of it. Like, obviously, like, if somebody complains about sleep, well, send them in for what they need to rule it out.

Cheryl:  40:16

Exactly. And unfortunately, we have to, as you’ve heard, probably those listening have heard a million times, you do have to be your own best advocate often and kind of push for those things and push for those referrals, because your doctor won’t always give them. And the last thing, which is, again, a huge, huge, huge topic, is diet and nutrition. I know often, sometimes people say the SPACED symptoms with the D at the end would be like diet, but the ones, the information on diet people can find and the resources in the resource guides. But did you want to share any quick takeaway before we wrap it up?

Eileen:  40:57

Yeah, I really, you know, the reason why I added diet or nutrition to this session is because it has so much to do with those extra-articular symptoms. Fatigue is greatly impacted by what we eat. When I eat, you know, more of a Mediterranean style diet, which you can refer to the resource, there’s tons of information on what that is, I feel better. I have less fatigue. I feel sharper. It helps with my cognitive function. It helps, you know, fuel me for exercise, helps with my mental health. And then, also how our mental health can interfere with our diet. When we’re depressed, we often have lots of habits that we need to break, which can include overeating or sometimes even under eating for some. And then, I also wanted to talk about how nutrition can affect sleep, because it can. I know like Christina, I’ve known for a long time. She’s a rheumatic disease patient and registered dietitian, and I’ve asked her like things. After my diagnosis, I’ve noticed how much more sensitive I am to food and how maybe different medications might interfere with things. So, I’ve noticed things like, if I eat pizza, I have a really bad sleep. Why is that? And, you know, she was able to explain that, you know. And then, it kind of makes me realize that what I put into my body, when I eat, what I eat really does affect how I sleep, and it’s really important for other patients and care providers to tell us that, know that. Because all of these different therapies or multiple disciplinary team members can help us, guide us through these symptoms, because they all connect.

Cheryl:  42:48

Yeah, yeah. And Christina is an amazing resource. We’ll definitely put her links in the show notes. And the one big, huge takeaway from me from the section is Christina made a really, really beautiful point about the importance of discussing nutrition in a way that is very nurturing, talking about food and like potentially the positive benefits of food choices, versus this shaming and scare tactic method, which unfortunately, is a very prominent in social media circles where they’re like, “Did you cut out sugar? Did you do this? Did you do that? You got you can’t eat that. That’s inflammatory. You can’t eat that. That’s inflammatory.” Well, technically, what’s inflammatory is going to be completely different for each person. Dairy is inflammatory for some people who are sensitive to dairy, it’s completely not to others, and it’s a great source of calcium to them. 

So, she just, I’m not going to say it as beautifully as she did, but she just made the case for encouraging your patients to see nutrition as a, you know, the positive benefits of nutritional choices, rather than food phobia. Because food phobias can turn into an eating disorder called orthorexia, which, unfortunately, I’ve seen many people have fallen into this, whether it’s full eating disorder territory or just food fear territory, where they get so obsessive about eating clean and eating healthy that it actually becomes a disorder. 

So, you know, and that’s a huge passion of mine is helping people see, you know, this is a, it’s not a one size fits all for some people. Like, for me, particularly that I have definitely certain food triggers that are more for like stomach pain and stomach bloating than necessarily directly joint pain and joint inflammation. But things like exercise make a big difference for me. Now, I have other friends with arthritis who they’re the opposite. Exercise doesn’t really have a huge noticeable effect for them, but nutrition does so. Seeing your body as kind of like an experiment, and being curious and open about it, versus like dogmatic, like, I must follow this one path is going to be hugely in your benefit.

Eileen:  45:03

I think it’s really important. That’s also another reason why I brought nutrition in the panel, because I remember when I was, you know, first diagnosed, trying to find out how to eat healthy was so overwhelming. I didn’t know where to go to, all the misinformation online, all the shame that we experience. I remember, like standing there in my kitchen shortly after diagnosed, crying because I didn’t know how to make a healthy meal that wasn’t full of stuff that was going to make, you know, I was so fearful of cancers and everything else. I was like, am I going to pass this on to my kid now? Like, just being so afraid because of like the information and the shame that I felt being diagnosed with an autoimmune condition, and how I’m not using diet to cure it, from some people, and the misinformation, especially online. I wanted to bring up, you know that the misinformation is there, and how diet isn’t going to cure us, but it will help us.

Cheryl:  46:03

Yes, yes, yes. That’s always an important caveat. That it can support, but it’s definitely not going to there’s, there’s no evidence that diet alone can cure rheumatoid arthritis, if it’s actually rheumatoid arthritis that’s the problem. So. 

Eileen:  46:20

It could have been something else, like reactive arthritis, or, yeah.

Cheryl:  46:25

Exactly, yeah. And so, you have a ton of helpful resources. You know, Arthritis Society has a ‘Role of Nutrition in Arthritis’ webinar on anti-inflammatory arthritis friendly eating. So many, so many. So, please go to chroniceileen.com/itsnotjustjointpain, but it’s also going to be linked in the show notes. And I’m just so grateful that you, you know, involved me as a panelist in this discussion, because it was so gratifying. I will say for the record, the room was pretty packed. There were a lot of rheumatologists there, too, and there were rheumatology health professionals like occupational therapists and non-doctor people, and there were also patient advocates there. And, yeah, people were very engaged. And hopefully there’ll be lots and lots more sessions on this in the future.

Eileen:  47:14

I hope so, too.

Cheryl:  47:16

Yeah, make sure to follow Chronic Eileen, and we’ll catch up with you more later. Bye-bye for now.

Eileen:  47:22

Thank you. Bye-bye.

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