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How to Prevent and Cope with Rheumatic Disease Flare Ups (Re-Release)

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Summary:

Confused about how to manage a rheumatoid arthritis flare up? This can be one of the most overwhelming parts of living with a rheumatic disease. On this episode, occupational therapist and rheumatoid arthritis (RA) patient Cheryl Crow shares evidence-based tools for preventing and coping flare-ups of pain, fatigue and stress.

This is a re-release of Arthritis Life Podcast Episode 38, which pulled from a live webinar Cheryl presented in June 2021. To view the recording of the presentation which includes the slides, please go to bit.ly/flaretools (case sensitive). 

Episode at a glance:

  • Updated intro from 2024: Cheryl introduces some additional resources for managing and preventing flare ups! 
  • Definition of a Flare-Up of a rheumatic disease (which includes ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis) 
  • What causes Flare-Ups, and why is it so important to discover our own unique flare triggers? 
  • Focus on Pain: tools to prevent pain and reduce existing pain
  • Focus on Fatigue: tools to prevent and reduce fatigue 
  • Focus on Stress: ways to decrease stress levels & cope with existing stress 
  • Focus on symptom tracking & Concluding Thoughts: how symptom tracking helps you discover your triggers 

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:

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:

[Introduction and Agenda Review (1:00)]

Hi, everyone! I’m so excited to bring you this recording of a live webinar I gave back in June 2021. Just a quick warning that I wasn’t using my regular microphone setup because I wasn’t planning on turning this into a podcast episode, and if you want to see a video of this training you can also go to my YouTube channel. There’s a link to it in the show notes. I hope you enjoy! 

So, you are in the right place if you have rheumatic disease. A rheumatic disease is not just rheumatoid arthritis. It’s anything in that similar umbrella, like psoriatic arthritis and rheumatoid arthritis, of course, ankylosing spondylitis or axial spondylitis, and even lupus is kind of considered in that same overall category. And some of these tips will also work for things like fibromyalgia, which I know some people have both. 

You’re also a great place if you are confused or overwhelmed about what even is a flare up, what can I do, and did I cause it, how to prevent it. Now I wish — I will tell you in advance, like I wish that this was like, I’m giving you all the secrets to never have a flare up again! But unfortunately, autoimmune diseases are notoriously very complicated and tricky, and so I don’t have all the answers but I could at least help you understand kind of the difference between things you can control and things you can’t control, so we don’t stress out too much over things we can’t control, because that’s not helpful for us. And then it’s also for you if you’re just feeling a little bit alone. Like, I got this diagnosis, now what? What am I supposed to do, I need more information. 

That’s one of my soap boxes, if you’ve heard me before. I have a lot of soap boxes. One of them is that patients with these rheumatic diseases need a lot more volume, quality and quantity, quantity and quality of patient education. It is not enough to do one 20-minute doctor’s appointment every three months to understand how to cope with these diseases, so that’s why I do what I do. The little agenda for today, we’re going to define our terms, we’re going to talk about preventing and coping with fatigue, pain, stress, and the overall process of discovering your triggers. These are all really long, complex topics. Each one of these could be like a three-hour webinar, so it’s going to be fast.

 I’m gonna talk fast, and just know that I will send out a recording of this so that you can kind of kind of like pause it and let things percolate. I mean, it’s pretty self evident like why should we learn this stuff, but just in case, the overall goal is to improve your quality of life, and well-being, and overall happiness and satisfaction, and being able to love your life even despite rheumatic disease. Because again, unfortunately, no matter how perfect you are, sometimes flare ups just come out of nowhere, so we want to live the best life we can despite them. 

So, a little quick introduction to me. Some of you know me from social media or other presentations I’ve given, but I’ve had rheumatoid arthritis for 18 years, almost 19. I’m turning 40 this year. I got diagnosed on my 21st birthday, and I’ve been an occupational therapist for eight years and little disclaimer, so even though I’m an occupational therapist and I love answering people’s questions, I have to be really careful because I can’t give any of you medical advice. This talk itself is considered like general education, it’s not considered like — you’re not receiving occupational therapy right now. I don’t think anyone’s super confused about that, but if you ask a question, I answer it, but your own occupational therapist says something different, always go with the person who’s actually treating you. If I give you an answer, it’s not meant to be interpreted as medical advice, just general education. I’m also a mom, a dog mom and a human one. 

I founded Arthritis Life, it’s like a little educational company. It’s officially a business, but it’s like — I kinda joke, it’s kind of like a non-profit because I’m not really making a profit but it’s not structured as a non-profit.  Well, that’s a whole other thing, but non-profits, I think it makes sense that people really want to donate for like a cure, they want to donate for research and a cure. Patient education and support groups tend to kind of be the first things that are cut with non-profits. To make it sustainable, this was the most straightforward and clear structure.

 Also, I like control, and that if you do have a non-profit, you don’t, as the founder, get all the control over the decisions that the Board of Directors does. So, I was like, I want to be able to do exactly what I want, say what I want, and give people the best education that I think exists. And I created Rheumatoid Arthritis Roadmap, an online course, and the Rheum to THRIVE support group, and I’ll tell you a little bit more about it later. 

But this topic of, you know, managing and preventing flare ups falls under the category of my ‘T’ in the THRIVE. I’m really obsessed with acronyms. So, ‘T’ stands for tools for pain and fatigue, but also we’re going to talk about actually a lot of these, you know, healthy habits as well which includes nutrition, sleep, exercise, and inner world which includes stress management. And then executive functions falls under the umbrella of tracking your flare up triggers. It all interrelates but let’s start off. So, I have 64 slides, I’m sorry. I’m gonna just go really fast, but I just have so much I want to say. So, okay, what is a flare up? If you’re confused, you’re not alone because there’s actually no one specific definition of an autoimmune disease flare up. 

[Definition of a Flare Up for rheumatic disease (which includes ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis) (6:30)]

Most agree that it’s a period of exacerbation of symptoms, but that could be pain and/or stiffness and/or fatigue. So, you can have a flare up of fatigue, for example, but not pain; or pain and not fatigue; or all of the above. No one has like — it’s not like if you have had a exacerbation of symptoms that last more than 10 days, it’s officially a flare up. There isn’t, like, again, one universal definition. 

So, if your doctors asked me — my doctors asked me like, “Are you flaring right now?” and I’ll be like, “Well, what’s your definition of a flare?” or I’ll say, “I’ve been having worsening pain or symptoms over the last X amount of weeks or days.” Some people will say, “I’m really flaring today,” meaning like just for one day I’ve had worse symptoms versus a prolonged period. So, just know that like when you’re out and about in the community of autoimmune warriors, people are going to use the same word and mean different things. 

[What causes flare-ups, and why is it so important to discover our own unique flare triggers? (7:40)]

So, what causes them? In general, because diseases like rheumatoid arthritis, ankylosing spondylitis, these rheumatic diseases, they are from your immune system attacking cells and tissues in the case of RA and your joints. And so, it can be caused by anything that is causing inflammation. And inflammation is your immune systems response to what it perceives as a threat. You might have inflammation from a virus, like an outside virus, you might have just natural inflammation from your body starting the autoimmune process for whatever reason it decides in rheumatoid arthritis, for example, to attack the synovial lining of your joints. It says, “Okay, the synovial lining of your joints, that’s the same thing as a virus,” and it starts driving inflammation to that area of your joints.

 It can also even be caused by anything else that your body is perceiving as an outside threat. It could be things like allergies or sometimes — this is where the nutrition part comes in — sometimes food sensitivities can trigger it. So, other things can include like your activities, so overexertion like, or stress is a huge trigger for flares with people, smoking, or weather changes would be another external thing. There’s kind of like, again, the things that are caused by your activity, things you can control, versus the external factors you can’t. To some degree, of course, you can control the exposure to an infection, but you can’t always control it perfectly, right. 

So again, I really like on the Arthritis Foundation website where they have some great patient education, blogs, and materials, and the Arthritis Foundation is the non-profit in the United States that’s devoted to helping finding a cure and supporting people with arthritis. They divided it into two categories. You have your predictable flares; again, where you know the trigger, and sometimes you might have some control over it. My example I always use is I went on a hike with my husband and my son for two-and-a-half hours and normally, my activity level is about 20 to 25 minutes of consecutive exercise. I’ll do like the exercise bike for 20 to 25 minutes. So, if you go from 20 to 25 minutes to two-and-a-half hours, just logically, that’s more than you can probably handle for a lot of people, but especially if you have a rheumatic disease. So, overexertion, again, other known known triggers can be stress, infection, not taking your medication. Another thing that could cause a flare up is your medication wearing off or not working as well over time.

Those of you who’ve had rheumatoid arthritis for example for a long time might have experienced this. If you’ve been on biologic medications like I have, I just started my fourth biologic in 18 years because in the last three they all worked really well for a while, but then my body, my immune system, created antibodies to the medicine. So, the medicine like quote-unquote ‘wasn’t working as well’, and it’s because of your own immune system. I like to say like your immune system is stupid enough to attack your healthy joints and healthy cells but smart enough to outsmart the medication, unfortunately. Sometimes, not always. Some people’s bodies don’t do that. So, again, not a lot of black and whites, a lot of gray areas. So, there’s the predictable ones you can control of something about it. In the case of the medication, you can take a different medication. 

But there’s also a whole category of unpredictable flares; flare ups with no known trigger. In general, the flare ups that have a known of trigger or it’s something that you did and like, again, the food sensitivities or things like that, they tend to be the short-term flare ups. Again, when I did that hike for about 48 hours, I was really fatigued. But it resolved because it was a short-term thing, versus an unpredictable flare where, hmm, I haven’t really changed any of my activity, my medications, and all. I’m just experiencing — I call it like a simmer first. You get like a small amount of increased pain, stiffness, fatigue, and then it slowly gets worse over time. And then sometimes I’ve had it where it just reaches a breaking point, and that’s like my most recent medication change, it was like okay, we’ve crossed the line. Now we got to do something different. 

So, the ones where we don’t have a known trigger tend to be the ones that are less likely to resolve over time. I mean, there is no average — there’s no average that I know of in the sense that the average wouldn’t really tell the story, because there’s a lot of people where it works for like three to six months. And there’s people like me where it’s typically for me about four to six years. And then there’s people I know, like my friend Christy, she’s been on Remicade for 12 years, and I know people who’ve been Enbrel for 15 years. So, if you take the average like 15 years, 6 years, and, you know, 6 months, it would be like the average would be like five to six years, but that doesn’t mean that you are going to experience that, unfortunately. 

So, again, this is really where the stress management comes in as well. I think it’s important to know early on in your journey that you sometimes have control over the flare up, but other times you might do everything right and still have a flare up. I think it helps to know that because then, I’ve seen a lot of people get stuck where they’re operating under the assumption that they can always prevent a flare up and that’s unfortunately not the case for everyone. I mean, some people find really, really strong triggers and they have success avoiding those but the majority are at some point are going to experience a flare up kind of out of, quote-unquote, ‘out of nowhere’. 

And so, just know you know that that might happen, and hopefully it won’t, but it just might. It’s not your fault. You know, we have to have some self-compassion. Another frequently asked question, “Will your bloodwork always show a flare up?” sometimes, but not always, and so that’s why it’s really important to communicate what’s called like your subjective report to your doctors, which simply is, what are you feeling physically, and fatigue wise, how much pain are you feeling? My doctor goes way more off — in my particular case, I’m just speaking as a patient — she goes off of my subjective report a lot more than my bloodwork. My blood work doesn’t tell the full story.

So, okay, we’re going to focus again in order, we’re going to do pain, then fatigue, then stress, and then how to track your symptoms to figure out your flare triggers. In general, you might have heard this before, it’s cliche, but an ounce of prevention is worth a pound of cure. I really like to focus on prevention, so things that are shown through lots of scientific research to help prevent pain in autoimmune disease and rheumatic disease, specifically, are things like — again, I know we’re all bored of hearing it after a while, but exercise, and nutrition, particularly discovering dietary triggers. Some foods really cause inflammation in some people. As one of the doctors I learned from said, “Inflammation doesn’t like to stay in one place.” What that means is inflammation that might have started in your joint can travel all over your body, and travel to your brain, which is what causes brain fog. I didn’t know that for the longest time. 

So, a couple other things we’re going to talk about like joint protection, sleep. So, in general, with exercise is confusing for many people to hear that exercise is really good for your joints because you’re like, “They hurt, so why would I want to move them?” but there’s like study after study after study that shows — and one of the reasons, it’s not just about like, quote-unquote, ‘having a healthy body weight’, although that can be helpful from a mechanical standpoint to not have as much stress on your joints. But one of the things that hardly anyone talks about, and I’m jumping forward to the third bullet here, is that your lymphatic system is like a circulation system similar to your circulatory system with your blood but it circulates some of your immune stuff, and extracellular fluid. And that circulating with movement is good for any sort of autoimmune disease. It gets things moving and in your joints in particular, when you’re at rest, things stiffen up. 

That’s why rheumatoid arthritis is characterized by morning stiffness. It really should be called like inactivity stiffness because when you’re sleeping you’re not very active. It can be very confusing to figure out what’s the best routine for you, and I think that it’s really beneficial to think about just movement. Not necessarily exercise. It doesn’t have to look like going to an exercise class. It could be dancing, it could be walking the dog, just getting any sort of movement that your body can tolerate. A lot of my Rheum to THRIVE members really like doing yoga videos, like Yoga with Adrianne on YouTube has a lot of free, gentle videos. And so, exercise is really good for prevention. But when you’re in an acute flare, sometimes it’s not. It’s better to rest a little bit or do something a little easier in your joints like aqua exercise, because that supports your joints more.

Some simple things about diet and nutrition. Again, you can do, you know, years long programs on diet and nutrition, but know that there is not at this point in the scientific community one diet that’s universally recommended. You will hear anecdotes from many many people, and they have amazing experiences with totally different diets. There’s the autoimmune protocol, there’s the vegan, there’s the carnivore one, keto, there’s so many different ones. In general, and there’s a lot of evidences starting to come out, like literally in the last few years, on some sort of connection between the microbiome in your digestive tract and your immune system, but no one knows for sure what’s the best way to go about calming whatever inflammation is going on in that area. 

So, in general, what doctors, and nutritionists, and registered dietitians in general have been supporting is an overall anti-inflammatory eating pattern. Because, again, sometimes what you eat can cause further inflammation, and again because inflammation travels, a lot of people find that tracking their food and their joint pain or fatigue is helpful. 

Some of the most common food triggers are sugar, gluten, red meat, processed food. I’ll tell you, I’ve been gluten-free and nightshade-free for 12 years now, 10 years, and it hasn’t had any impact on my rheumatoid arthritis, but I have stomach issues as well. I have something called gastroparesis and small intestinal bacterial overgrowth, and it’s really helped me. It makes me — overall, my sense of wellness and well-being feels better because I’m not as bloated anymore. I used to be really bloated all the time, I didn’t realize that was not normal. 

And so, I went gluten-free initially for rheumatoid arthritis, and then it didn’t help that but it helped my bloating a lot. So, I feel just good about that but, you know, there are people who say, “Oh, my gosh, I went gluten-free and then like, 12 days later, I had like no RA symptoms,” and, you know, it’s very confusing and overwhelming. I’d say — for myself personally as a patient, and for many people I talked to and support — I would say in general, because it’s such a complex area, I really recommend if you really want to pursue it, going through a registered dietician. There are people who have a master’s degree, they’ve extensively studied it, and they can help you parse through all the different complex variables with diet. So, I’m happy to give some recommendations. 

A couple other things you can do to prevent pain are thinking about protecting your joints. Now, this is for when you have rheumatoid arthritis if your little joints like your fingers and wrists are hurting, you want to use your big joints during your activities to protect your little ones. Now, if you’re having something like ankylosing spondylitis, or something that may be affecting the larger joints more, it might be the opposite, right, but in general you want to think about spreading the force of your daily activities across multiple areas and using bigger joints to support smaller ones. 

You also want to, with rheumatoid arthritis, think about avoiding what’s called ulnar drift. That’s the quote-unquote ‘deformity’ that naturally occurs with uncontrolled rheumatoid arthritis. If you look at the pictures online, you’ll see people’s fingers are kind of curled and they’re all adrift. Your knuckles drift towards your pinky. It’s more efficient ergonomically. A couple other life hacks would be things like pacing yourself. We’re going to talk about that a little more in the fatigue section. Using gadgets, like you guys who follow me on TikTok know, jar opening is key twist and grips; for writing, I love pencil grips; and then using alternative grasps like stabilizing the pen between your pointer and your middle finger rather than holding it with like a tripod grasp. I can send some videos to you on someone who asked in the comments, and then yeah, holding your purse on your elbow instead of with your fingers. 

[Intermission begins]

This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes or by going to www.myarthritislife.net.

[Intermission ends]

Interestingly — okay, sleep is an interesting one because I think most of us have heard of like painsomnia, right. It’s when you’re in pain and you’re having a hard time sleeping, and a lot of times we tend to think — and I’ll tell you, I used to think this, and it can be true for you — but when you’re in pain, that pain makes you not be able to sleep, and that’s why you can’t sleep well. But weirdly enough there’s evidence — and it’s actually really like disturbing how they did this evidence. They took people with rheumatoid arthritis, and they had them become sleep-deprived. They only made them sleep three to four hours a night, and they found that lack of sleep itself causes pain, as well as pain can cause lack of sleep. In general, if we get into all the statistics and research, it’s actually a stronger effect. Lack of sleep has a stronger effect on pain than pain has on lack of sleep. 

So, in other words, prioritizing your sleep is something that can help prevent pain and address existing pain. Again, I don’t want to like put these thoughts in your head, but like I think sometimes the sleep stuff gets a little bit boring because it’s like, “Oh, my gosh, really? It’s like I have to go to bed at the same time every night, and like make it comfortable,” it sounds like it’s always the same advice, right, but sometimes the simplest advice is the best. Thank you, Joanne, I think it’s interesting too. 

Yeah, when I went to the American College of Rheumatology conference in 2019, the last conference I went to in person, and the presentation on sleep was packed. Like, everyone was really fascinated by it. And so, a couple of things again, keeping your room cool has some evidence for helping with sleep, and keeping your bedroom only for sleep or rest. I’ll be honest, I have to take this little thing, my phone, and just put it away. Otherwise, I do not have the self-control to stop looking at my phone when I’m trying to fall asleep so, you know, it’s called sleep hygiene. Kind of the idea that, you know, just like we have hygiene for other things, we should have hygiene for sleep. Yeah, and I — oh, gosh. Sleep is so huge for me too, for my mood, right?

And everything’s interrelated; mood and stress, sleep, you know, pain, fatigue, it’s all interrelated. Another thing I want to make sure to mention is that a lot of individuals have other triggers for pain. Things like stress is a common one, weather changes, you know, too hot, too cold, too much sunlight. Does anyone else have a different pain trigger that I haven’t mentioned already? I guess that sometimes, for me it would be like not just over exertion physically, but like overexertion mentally. Sometimes if I’m just really mentally having to focus on something a long time, I get kind of like a mental fatigue or brain fog, but not necessarily pain. Anyway, let me know in the comments if you have other ones. 

And so, also, I don’t want to forget to mention that like in general medical management can help prevent pain because the medications that really address the underlying disease and help stop that inflammatory process can prevent pain by putting your disease into remission. So, don’t want to overlook that. That’s something that’s really important to get on top of. And of course, there’s things like if you have existing pain there’s medication and medical management things you could do, like pain relief medicines, not just opioids. There’s other kinds and, you know, there’s over-the-counter, there’s CBD, cannabis can be really helpful for some people. It is an analgesic. And also topical creams, like a lot of people like the Voltaren gels. I like Biofreeze, it’s just kind of like an icy hot type one.

 Yeah, it sounds like mental exhaustion is another — no, and that’s not, yeah, using your hands and doing housework can be a huge trigger because it is exertion. You burn calories and you’re moving your body a lot. Yeah, and hot weather. Yeah, I cannot tolerate the heat very well. So, yeah.  And then, okay, so what do we do? Again, we focus on prevention, and then what do we do when pain exists? 

[Focus on Pain: tools to prevent pain and reduce existing pain (25:00)]

I want to briefly, briefly — oh, my gosh, I’m gonna have so much to say — talk about gate control theory, or just put the bug in your ear to look up gate control theory. It is this idea that pain is a process. It starts in your peripheral nervous system, which is like in the nerves that are in your hands, for example, and it travels up to your central nervous system, which is your brain and spinal cord. It has to go from your peripheral to your central nervous system in your spinal cord. That’s why, for example, if you get a spinal cord injury, if it’s a complete spinal cord injury, you don’t feel anything underneath the level of your spine and spinal cord. Anyway, point being, when it travels up your spinal cord to your brain, before it gets up there, the theory is that it encounters these little gates that can essentially change the magnitude of how strong that signal is going to get into your brain. 

All pain is processed in your brain. That doesn’t mean that your pain is in your head. It just means that, again, if that signal can’t get to your brain, you’re not going to feel pain. Again, that’s why a spinal cord injury, your brain is okay but because it’s like a highway, a freeway, and if you block the freeway at one point, none of the cars can get through. That’s what happens in a spinal cord injury and people get paralyzed, they can’t move or sense pain. 

Point being that what you can do is your actions and the things that you do, and your ability to actually even do things like controlling your stress and managing your stress, can actually influence whether those gates are going to be super open and allow a lot of pain signals to go up, or whether those gates are going to close or leave a smaller amount open. So, again, this is a whole giant long theory, there’s tons of articles about it, but point being that a lot of times people just say, “Oh, use a hot pack or use a cold bath,” I do these things but they don’t explain why. The reason things like heat and cold can work — I mean, there’s multiple reasons. For example, if your joints are hot and inflamed and you have a lot of swelling, cold, physically, it decreases circulation so a cold pack can work for that reason. But also, heat and cold are extra sensory signals, and the same with pressure. 

The way I like to put it is it’s kind of like, instead of, let’s say, one straightforward signal to my brain that’s saying, “I feel pain in this joint,” if you have pressure too, it’s like two different things are shouting to your brain at the same time. One’s like, “I feel pressure!” and one’s like, “I feel pain!” and it can’t simultaneously process both of those very well. The way I put it in layman’s terms is it just kind of dulls the sensation of pain because it’s simultaneously trying to process both of those. So, that’s why, again, because all these sensations — pain, temperature, pressure — they’re traveling in similar roads, for lack of better word. Like, highways from your body parts up to your brain. 

Again, hot packs and cold packs can be good when you have an inflammatory condition. In general, it’s not recommended to apply heat onto joints that are already hot and inflamed. Heat is really good for cold, stiff joints. And I just want to mention a lot of people love like hot wax paraffin baths. You can get them — like the ones that you can get in the nail salon — you can buy those off Amazon. Some people are just like, “Oh, this is a lifesaver.” Again, compression can be helpful, pressure; and then exercise again. Exercise and movement can be helpful in reducing pain as well. There’s things like a TENS unit, trans-electrical something. It’s something that you can have at home. 

Again, the theories for how these work is the same with vibration, it dulls the sense of pain by creating competing sensory input. Ultrasound, and also there’s some evidence ultrasound actually can help with tissue healing as well. And then of course there’s all sorts of alternative therapies and I’m not endorsing these specifically, but just so you know about them. There’s some evidence with acupuncture, mixed evidence for massage, Epsom salts, teas, supplements, all sorts of things. 

And then mental tools. So, that’s why everyone keeps talking about mindfulness now. Mindfulness, mindfulness, should I be sick of hearing about it? Or mindfulness-based stress reduction, because stress is inflammatory as well. There’s all this evidence that shows when people are stressed their pain appears to be processed as more and more intensely, so we’re going to talk a lot more about some of the tools people use to cope with pain or reduce existing pain, you know, mindfulness and gratitude. 

A lot of people find comfort in religious connections or mantras, and/or mantras and inspirational quotes. I say a lot, “This too shall pass,” or, “We can do hard things.” I just want to show a quick example of my pain toolbox. I think it’s great to like literally make a box, like a bin or a basket, something cute that’s you know that you can go to. And so, things like, again, my hot and cold packs, my compression gloves, topical pain relief — for me it’s Biofreeze, I’m not saying it’s right for everyone. Some people are like, I don’t like Biofreeze. Things that help me feel more calm like camomile tea, and lavender scents, and like fidget tools like my little sequined pillow. This is me, I used to be a pediatric occupational therapist, these are common things used in that. 

Mental tools, music has a strong association with emotions, can help you feel more calm. And then, cognitive and mental tools which are gonna talk a little bit more later. And then, social. So, everything’s again all interrelated. For me, I’m very social. Sometimes connecting to a friend or having a social gathering can help me feel more at ease and maybe provide a little bit of a distraction. Okay, so again, pain, it’s hard to separate all these things because they’re a lot of times co-occurring, but you can have fatigue without pain, or pain without fatigue. So, I’m gonna talk about fatigue separately. 

[Focus on Fatigue: tools to prevent and reduce fatigue (31:00)]

Again, similar to a flare, fatigue doesn’t have like one perfectly universal definition, but it’s usually defined as like a debilitating period of exhaustion; interferes with daily activities — a lot of us are like, yes, I’ve experienced that — also can include decreased ability to think, which sometimes we call mental fatigue or brain fog; decreased ability to move your body; and then full body tiredness that is present, even if you sleep enough. That’s one of the differentiating factors of fatigue versus sleepiness. 

Now, fatigue is multifactorial, meaning it can come from multiple sources and it interlapses with other things like overall pain, psychological — now, this chart from this research article says psychological disturbance, kind of like a negative word — but, you know, things like depression or anxiety which are very common, and I almost think, you know, like normal when you have an autoimmune disease. What’s nice about things being interrelated is that an improvement in one area can have improvements in other areas. The bad thing about it is that something bad happening in one area can affect the other areas as well. So — I need to close this, what is going on — sorry, I’m having like a window that’s I’ve never seen before. Okay, there we go. 

So, fatigue can come from many, many different things. Now, in general, fatigue is correlated with inflammation; however, a lot of the most recent research has shown that people can have persistent fatigue even when the inflammation is well-controlled as shown by their inflammatory markers in their bloodwork. Inflammation also, like I mentioned earlier, it doesn’t like to stay in one place. It can travel to your brain, which is what causes brain fog, and it actually can directly cause metabolic disruption, which is like the energy that you get from your cells, essentially, in layman’s terms, and that can cause this fatigue. It can also be caused by pain. So, pain is correlated with fatigue. Again, not always though. I like to joke, they’re like different Whack-A-Mole’s, like in the old game Whack-A-Mole, you have to like whack this one, and whack that one. Sometimes, they’re at the same time, sometimes they’re different.

And then stress. Stress is pro-inflammatory and can exacerbate fatigue as well. It is correlated to exercise, meaning there’s an interesting relationship between fatigue, sleep, and exercise. And basically, when they had an exercise intervention, sleep got better, and fatigue got better. Again, it’s unintuitive, right, because you’re like, “When I’m exercising, I’m expending energy, and fatigue feels like I don’t have enough energy, so why would I waste some of my energy?” 

That’s why things like the Spoon Theory, they’re really helpful in some ways, but they’re not really complete because there are actually things you can do during the day that costs you spoons like exercise, but they actually give you more spoon back too. So, it’s not quite so simple as like a finite number of spoons. If you haven’t heard the Spoon Theory, it’s like this metaphor developed by a wonderful woman with lupus, who talks about like having — it’s a way to explain fatigue to friends and family. But, another thing, other things you should really think about if you’re having really severe fatigue with your rheumatic disease is getting assessed for other underlying factors. Things like anemia, thyroid problems, infections, medication side effects, sleep problems. Sleep apnea is much more prevalent in people with rheumatoid arthritis than the general population, even if they have no other risk factors. And then low levels of vitamin D can also be associated with fatigue. 

So, how can you reduce fatigue? We’re going to talk about these factors. Energy conservation is a way where you change how you approach your daily tasks to save energy. Things like, you know, chunking your task into smaller parts. An example might be chopping up some of your food for meal prep on the night before so that in the morning you don’t have to do as much prep for breakfast, and taking rest breaks. So, that comes help you replenish spoons, sometimes rest does. It’s just also that sometimes exertion also helps, which is so weird. 

And in this research study that was talking about — that showed that exercise improved sleep and fatigue, it wasn’t like they were doing rigorous exercise. It was a mixture of walking, resistance training — meaning just lifting small amounts of weights — and stretching for 30 to 60 minutes a day. Now, that is a lot if you do it every single day, but it’s not like they were running the marathon, right. So, it’s accessible to a lot of people. 

Again, you also want to look at other fatigue triggers. Stress or mental health, you know. Mental stress can definitely cause a sense of physical fatigue. I’m curious if all of you, anyone has ever had the experience before of like really having only mental fatigue and not physical fatigue; or only physical fatigue and not mental. Like, I think that the example for myself of like laying in bed, when you’re like your body’s really tired but your mind is just going like a mile a minute. You have no brain fatigue but only body fatigue, versus having mental fatigue but your body’s like, “I could go run around right now,” but your brain is just like, ugh. So, that’s that’s how for me it can be one but not the other. Yeah, or you can have it at the same time. And so, you know, sunlight is a huge trigger for many people, especially with lupus. But for me with rheumatoid arthritis, it’s also a big trigger, and heat as well. 

A couple other triggers could be, again, heat as well as sunlight. It could be separate. You can be out in the sunlight with no heat like, you know, on a mountain skiing or something. And then of course, overexertion. Again, another few other ways to prevent and treat fatigue would be like with dietary changes. Some people find the anti-inflammatory eating pattern, avoiding pro-inflammatory foods and food triggers, some people find more energy with intermittent fasting. It’s not recommended by some of my favorite registered dietitians, but I just want to mention it because some people do have success for it. And then talking to your doctor because I didn’t know this till I was in some patient groups but, you know, some doctors will prescribe stimulant medications like ADHD medication to give you more energy because they are stimulants, or supplements, or other medical interventions.

[Focus on Stress: ways to decrease stress levels & cope with existing stress (37:00)]

Okay. So, stress is my favorite thing to talk about, but I think I’ll go fast through this because I already have some other trainings I can send you on this. I just did one a few months ago. But, again, when we think back to about like the known triggers versus unknown, it’s really really helpful mentally to separate solvable versus persistent problems with your autoimmune disease. So, solvable problems might be like, “My joints are a little stiff in the morning, the solution is a warm shower or hot pack,” and it helps you feel better, but there are these like perpetual or persistent problems. 

Things for me like those flare ups that come out of nowhere, or other unknowns, like uncertainty, what’s going to happen in the future, will I find the medicine that works, how can I cope with this. So, again, like I mentioned earlier, I think if you approach things — or a lot of people try to say like, “I have the answer. All you have to do is do my diet or do my supplement and you’re never gonna have a flare ever again,” there are some people who have that experience, but most people don’t, at least the ones that I’ve talked to and from the research is that there’s going to be flare ups. 

And so, acknowledging and accepting ahead of time that there’s some parts of this disease that are not immediately solvable or don’t have like a clear path for prevention actually, weirdly enough — it sounds like it might be depressing, I’m sorry if it is — but for me it’s actually been really freeing and helpful, because I do have a limited amount of energy. Like, mental and physical energy each day, right. If I operate under this assumption that ‘if I just did everything perfectly, I’ll never have a flare again’, then when I’m not feeling well, I’m gonna be using a lot of energy trying to maximize everything in my life. “Oh, I have to do the perfect diet, the perfect sleep, I have to blah, blah, blah,” all that is like controlling everything. And I’ve seen a lot of people with rheumatic diseases, they get really caught up in that perfection mentality, particularly when it comes to diet. There’s actually a mental condition called orthorexia that a few of my friends have had where it’s like you become obsessed — not like anorexia — but you’ll become obsessed with healthy eating. You have to do everything perfectly healthy, and that’s not helpful for your stress levels either. 

But my argument for this is, it’s about how much energy you’re going to spend in your life. Do you want to spend it on things that ultimately might not actually help you because this disease is kind of unpredictable, or do you want to spend some of that energy saying, “Okay, this is what is available to me in this present moment, right now. Even though I have some pain even though I have some fatigue, if I accept that that’s just how it is, then what’s available to me?” it kind of frees up this mental energy from like this myopic idea of like, “I have to be the perfect patient and perfectly control everything.”

Yeah, what is perfect anyway, as Lindsey’s saying in the comments. But again, I’m like the last person that would say like, don’t try to manage your disease well. Of course, there’s a lot of benefits in knowing all the tools in your toolbox, and I spend a lot of time educating people on that, but I also think that acceptance can be so helpful. And I’ll say, this is one of my little graphics I made, but you know, “Will this flare get better?” That’s a question that has an uncertain answer, right?  

When you’re in the moment, the present moment, in a flare up, you don’t know for sure whether it will get better. So, it’s an uncertain situation. There’s kind of like three ways that people’s brains tend to look at these. You can either have the door number three which is like ‘doom and gloom’, like it’s never gonna get better. There’s no hope. I might as well not try. That’s kind of like the depressive explanatory style. And again, that’s totally valid if that’s where your brain goes, that’s totally valid. It’s just, it’s not the most helpful mindset for you to engage in your life. Then there’s door number one which is the ‘positive thinking’ or this kind of like seeking control. Like, it will get better. 

The question is, will my flare get better? Door number one is, it definitely will get better. All I have to do is just control it or do this perfect thing, and, you know, if I just figure it out, it’ll get better. And I just need to try harder, and think positive, and do everything perfect. And that’s comforting short-term. That’s totally where my brain wants to go. This is why this acceptance thing has like rocked my world in a positive way, because I know what it’s like to want to go to door number one. I don’t tend to go to door number three as often, but definitely I’ve had phases where I have. 

Yeah, forgiving yourself, having self-compassion is very freeing. And that’s why door number two is ‘accepting uncertainty’. Accepting doesn’t have to mean you like it, it just means that you’ve accepted that is what is happening. So, it might get better, it might get worse. That’s the difference between two and three. Three is like it definitely will get worse, it’s definitely horrible, and nothing’s ever gonna get better. And door number one is it’s definitely going to get better, so there’s certainty. Your brain wants certainty and black and white answers because it’s simple, but door number two is having to accept uncertainty. 

My poor therapist has had to work with me on this, and but I’m like, I finally get it. That it might get better. It might. It might get worse. Like, we literally don’t know in the present moment. What I can do is try to still have a meaningful and enjoyable life despite this uncertainty. That’s the way of ACT, which is Acceptance and Commitment Therapy. That’s like my favorite thing actually to talk about with all this stuff. So, again, talking about the limited energy you have, it definitely is beneficial to think about ways to make the problem go away, reduce pain and fatigue, like I already mentioned all these different things. Prioritizing sleep, using your hot packs, and your tools, attempting to cure or heal your condition — I don’t spend a lot of time on that anymore. But again, if that’s where you want to go, totally work on it, you know. It can work for you, potentially. 

Then there’s the what we call in OT, in occupational therapy, compensatory strategies. Working around it and functioning despite, you know, adaptations. So, can you do some life hacks given my existing pain or fatigue, can we pace ourselves, what can I still do now. And so, yeah, if you’re still working on door number two, you’re not alone. I’m still working on door number two, and it’s very, very common to vacillate quickly between like all three, right. Like, “Oh, it’s never gonna get better. Oh, yes it is. I’m gonna be happy again. Oh, maybe it’s just uncertain,” you know, it’s totally a work in progress, that’s why. 

So, a lot of times people think mindfulness just means like sitting on a placid, you know, plane and calming your mind and feeling at peace, but actually, mindfulness is, as far as I understand from some of my research, it’s keeping your attention in the present moment without judging it as happy or sad, or good or bad. So, it’s whatever is happening in the present moment. Learning how to observe your thoughts without judgment or trying to change. And that means if you’re in pain, being able to observe yourself in pain. And it is hard, right, because when you’re in pain, that’s usually the last thing you want to do, is think about your pain. 

I remember when my therapist first taught me this I was like, uh, I literally said like, “You’re a sadist. Why would I want to do this?” but the idea is when we try to distract ourselves and focus only on eliminating the pain, the pain has the power over you. It’s communicating to yourself subtly that I can’t handle this pain, like, I have to do something about it. Whereas, taking a moment — this is not like your whole life being like, “Oh, well, I’m just gonna like feel my pain,” but taking a moment to allow yourself to just connect to the present moment, it actually teaches your brain that you can handle it. It’s really weird but it’s worked for me at least. 

And so, ACT is Acceptance and Commitment Therapy, it’s a long whole thing but, you know, it stands for Accepting our thoughts and feelings — that includes physical sensations — Connecting to your values, and then Taking action. It’s not just about thinking about what’s going on and having a little moment, it’s actually about changing your behavior based on what you value. So, you make room for your feelings and sensations, allowing them to be exactly as they are, then you ask, “What can I do right now that’s truly meaningful or important in my life?” and that is different from asking, “How can I feel better?” 

That’s what’s really freed me. And that’s from Russ Harris, he’s an amazing psychologist, he wrote ‘The Happiness Trap’ which is all about this approach. Because when you are engaged in this focus on ‘I have to feel better, I have to feel better, I have to feel better’ all the time, it ends up controlling your life for many people versus saying, “Okay, this is what it is like, and I still have options,” right. I kind of say sometimes, it’s a little bit tough love, but unless you’re in a coma, you still have a lot that you can do. It doesn’t mean that you have to like it, right, like I would prefer not to have rheumatoid arthritis, or prefer not to have pain and fatigue, but this is what I have. There’s still possibilities for me to have a wonderful life.

 So, again, what they call it is ‘turning off the struggle switch’. Instead of seeing these emotions as problems to be solved like anxiety, anxiety about anxiety, sadness, frustration, guilt, you’re like, “I just need to feel better all the time,” you say, “Hmm, I have anxiety. I have stress, you know, understandably, because I had this stressful autoimmune disease. I don’t want it or like it, but I’m not going to struggle with it. I’m just going to allow it.” It’s really weird but it works, okay. 

Another thing, so that’s acceptance-based therapy and mindfulness-based approach, there’s also more traditional cognitive behavior therapy. I just want to give you a quick exercise called catching ANTs. And this is where you think about like, there are benefits to changing negative thoughts that are not helpful for you, right, like sometimes they’re distortions. So, I call them ANTs, Automatic Negative Thoughts. A common one would be filtering, like having a distorted filter, so you only pay attention to what’s bad. 

Again, paying attention only to the pain and not what else is available in your life, or in this case, surprisingly for somebody who’s kind of like a happy personality, I have a lot of negative thoughts all the time. I think, “Oh, I’m stupid. I’m not good enough,” you know, but what I do is I just examine that thought for a moment, and I know that there’s a repercussion of that. If you forget to take your meds, then your brain is like, “I’m stupid,” you’re gonna end up feeling frustrated and angry, and you’re gonna have behaviors from that feeling; irritability, and that has a cascading effect, versus having self-compassion and saying, “I forgot to take my meds. Oh, I’m human, it happens,” I can have self-compassion and feel fine about this because I’m just, again, I make mistakes. Everyone makes mistakes, right? And then I’m not going to have that cascade of negativity. So, that’s just one other mental exercise.

Again, recapping what’s in my stress toolbox. Talking about this was all supposed to be about flare ups, right, well, how does this all relate? Well, again, when you get caught in this struggle with your emotions, it’s very stressful because you’re trying to control your mind and your mind does not want to be controlled very easily, right. It puts you at a less inflammatory state to be able to accept the present moment. 

I also want to mention a couple other tools I use like gratitude, and journaling, like I mentioned earlier, music, and socializing, and then distraction can be good for short-term. Distraction’s just not a really sustainable long-term strategy because at some point you have to like be in your life. And then quickly, I mentioned symptom tracking because a lot of this is about finding your unique flair triggers, okay. So, when you track your symptoms — people have different preferences, first of all. I’m in this weird sandwich generation where I do actually prefer to do a lot on pencil and paper but a lot of younger people like to do computer trackers or apps. 

I can give you lots of recommendations. I don’t have one app that I love the most, but there are a lot of great free ones out there, and a few paid ones too. You can track pain, stiffness, fatigue, and stress. Those are kind of the four for rheumatoid arthritis that I track the most. And then you can correlate them to nutrition, exercise, your stress management choices like meditation or mindfulness, and then the other external factors, and that can give you a great sense of self-efficacy or the knowledge that there are ways that you can prevent pain and fatigue from happening and cope with them. 

Phew, gonna take a deep breath for a second. Okay, so, I’m gonna so as a recap, we focus on prevention, discovering your triggers, and remembering that some things are out of your control, and accepting that can go a long way to helping you remember that you still have other things you can do in your life and you can still have a good quality of life, and then manage stress. So, I am going to talk quickly about a bonus tool that is my THRIVE toolbox. I mentioned Rheum to THRIVE earlier, that’s my online support and education group. 

Every six months we focus on a different one of these. So, we have a full month on tools for pain and fatigue, a whole month on healthy habits, a whole month on relationships and social life, friendships, and connections, and then a whole month on inner world, and then valued activities and hobbies, and then the CEO skills; executive functions like symptom tracking. I want you to know that, you know, you don’t have to cope with all this on your own, and I do a lot of free trainings like this webinar, but I also do have this more intensive support group called Rheum to THRIVE, and it includes these three live video calls every month, and then an ongoing online support group. It really has been incredible the last few months to run this group. I used to do it as part of the Roadmap Course and now I’m doing it as an ongoing group. I’ve had some great testimonials from the Rheumatoid Arthritis Roadmap, that’s a self-paced online course that goes into a lot of we’ve talked about today in more details. 

But I did want to leave some time for questions. Having a support system, I should have put that under stress, but having a support system and understanding in your friends and family members can go such a long way. I’ll put in the in the comments on my podcast episode, one of my favorite ones that I’ve done — I have a podcast if you didn’t know that — it was about ‘Eight things everyone who loves someone with arthritis should know’. Oh, no, sorry, it’s even longer than that. It’s called ‘It’s not just joint pain and eight other things everyone who loves someone with arthritis should know’. 

Yeah, and Joanne, if you have multiple illnesses like Sjögren’s as well, they say you know autoimmune diseases don’t like to travel alone, meaning if you have one, you’re more like to have another. It’s really frustrating. I’m so sorry you have Sjögren’s too, and it can be really hard. Is it my Sjögren’s, is it this, is it that. I joke sometimes, is it like that thing where if a butterfly flaps its wings in Africa, the weather changes where you are? Like, it could literally — that’s why I sometimes find it more useful, depending on the time, to say, “This is just random, and I don’t want to just engage in this,” like, sometimes I feel like it can be a fool’s errand to try to figure out exactly what caused it and I can just say, “Okay, it’s here. What can I do?” 

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