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Patient Stories, Podcast, Provider Interviews

How Can Exercise Reduce Pain and Fatigue in RA? Episode 117, Arthritis Life Podcast

2 months ago
70 min read
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Video of Conversation:

Summary:

Occupational Therapist Cheryl Crow and physical therapist Dr. Kimberly delve into the complexities of managing chronic pain from rheumatoid arthritis, and explore benefits of exercise for rheumatoid arthritis pain and fatigue. They are both RA patients as well, and pull from their patient experiences as well as the scientific research.

Cheryl and Kimberly discuss the research behind lifestyle interventions such as physical activity, nutrition, sleep, and stress management for managing pain and fatigue. They also discuss the 2022 ACR Integrative Guidelines for Rheumatoid Arthritis, which include evidence based recommendations for physical activity, nutrition, and mind-body practices.

Cheryl and Dr. Kimberly discuss the importance of pain science education to help patients better understand and manage their pain perception. The also explore the importance of building a network of health professionals and support groups to empower patients to advocate for themselves and navigate their treatment journey effectively. They conclude by discussing how to accept limitations while finding joy and adapting to new activities.

Episode at a glance:

  • Building Support Networks: Cheryl and Dr. Kimberly discuss the significance of building support networks, including health professionals, support groups, and reliable online resources to empower patients to advocate for themselves and navigate their treatment journey effectively.
  • Pain Perception: They explore the complexities of interpreting pain signals, and discuss strategies for managing pain perception through education and awareness.
  • Practical tips for Exercise for rheumatic disease: They share exercise tips,  including to start slow, give yourself time to adjust, consider the pillars of physical activity, and try to be consistent. Some types of exercise to consider are aquatic exercise, hand exercise, or individually prescribed exercise from a physical therapist who understands your specific needs.
  • Which lifestyle interventions have the most scientific evidence: They discuss the 2022 ACR Integrative Guidelines for RA and how lifestyle interventions such as physical activity, nutrition, sleep, and stress management can help reduce arthritis pain and fatigue. Kimberly delves into more specifics about benefits of exercise for rheumatoid arthritis pain and fatigue.
  • Acceptance and Adaptation: They address the importance of accepting limitations while finding joy and fulfillment in adapting to new activities and experiences, encouraging patients to focus on what is still possible despite challenges.
  • Individual needs: They highlight the need for patients to understand their own bodies’ rhythms and balancing interventions based on their unique needs.

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:

Kimberly Steinbarger is a Physical Therapist and Assistant Professor at Husson University in Bangor, ME, with a 32 year history of RA.  She runs a pro bono clinic through Husson, and specializes in rheumatic disease in both my research and practice. She was also one of the contributing authors of the 2022 ACR Integrative Guidelines for Rheumatoid Arthritis.

Cheryl Crow 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.

Full Episode Transcript:

Cheryl:  00:00

I am so excited today to have a physical therapist who also has rheumatoid arthritis. This is a double whammy. And we have Dr. Kimberly Steinberger, and she is a physical therapist and assistant professor at Husson University in Bangor, Maine. So, we’re basically, I’m talking to her from Washington State, on a totally opposite side of the country. So, she’s had rheumatoid arthritis for 32 years. And she also runs a pro bono clinic specializing in rheumatic disease in her research and practice. So, welcome. Thanks so much for being here.

Dr. Kimberly:  00:33

Thank you for having me. 

Cheryl:  00:35

So, I just gave away my first question. But so, you know, why did you, I’ll just say, why did you become a physical therapist? And how did you end up specializing in helping people with inflammatory arthritis?

Dr. Kimberly:  00:50

Well, I, when I became a physical therapist, I did not have RA. So, I went through college. I decided to become a PT, because I wanted to be in the healthcare field. And I didn’t want to go to school forever. Back then, it was a four-year degree. And I really, I really enjoyed the topic. And after I graduated in ’89, I was diagnosed two years later with RA in ’91.

And I kind of knew what it was because of my schooling before I was diagnosed. But, you know, back then, the diagnosis was kind of a long process, it was all a very new process. And so, that kind of started my interest, but I really didn’t kind of, I didn’t really, really pick it up until I was in my 40s. And I started doing more research and getting more involved in the community, the arthritis community, as I aged. 

Cheryl:  01:52

Well, and to rewind a second to your diagnosis time, were you concerned that you about how having RA would affect your career as a PT?

Dr. Kimberly:  02:04

Oh, I didn’t tell anybody. 

Cheryl:  02:06

Oh. But I mean, just symptom wires. Were you concerned that you wouldn’t be able to do the job?

Dr. Kimberly:  02:12

Yeah. Or that there would be a bias. You know, physical therapists, we’re, you know, we’re the healthy, we’re the, you know, we’re the, we’re in good shape, we move people around. And there was the dichotomy there with my diagnosis. And so, I didn’t tell anybody.

Cheryl:  02:30

Oh, my gosh. And was it hard to do your job? Like, where were you, what kind of setting were you working in?

Dr. Kimberly:  02:35

I was working in a hospital. So, luckily, we rotated through the different levels. It was, I was actually in Honolulu, Hawaii at the time when I was diagnosed. 

Cheryl:  02:44

Oh, my gosh. 

Dr. Kimberly:  02:46

I didn’t have anything better to do after school, right. So, I moved to Hawaii. So, I, luckily, I could I rotated through. So, some of the floors were more physically demanding than others. And I always had very good rehab aides, physical therapy assistants, to help me if I needed some help. 

Cheryl:  03:07

Yeah, yeah. And that, I mean, that’s a huge concern for so many people who are recently diagnosed. Can I still, you know, do my career. And so, to me, it’s like heartening to hear that you were able to kind of compensate for the pain. 

Dr. Kimberly:  03:25

Yeah. Yes. So, you know, I was so young, I was 24 when I was diagnosed. So, it took me quite a few years to be able to kind of advocate for myself and say, okay, you know what, I’m really good at this job. And here’s what I need in order to do it well.

Cheryl:  03:40

Well, and so, just to deviate a little bit. So, we have a little plan here of I’m already deviating from our plan of questions. But just out of curiosity, I know you were diagnosed right before like the biologics were coming out, right. So, medication wise, how was your — if you don’t mind sharing, like —

Dr. Kimberly:  03:59

I don’t mind. I took gold. 

Cheryl:  04:01

Wow, okay. 

Dr. Kimberly:  04:02

Yeah, that’s how old, that’s how old I am. Yeah, I took gold for several years. I took, you know, some of the NSAIDs, salsalate, all the older ones. I took those for a lot of years until I finally started methotrexate maybe 10 years in. And yeah, so I took — I was lucky, because back then I had doctors that treated it aggressively right away. They didn’t start me with the aspirin and the, you know, and the kind of really, you know, over the counter type treatments. They were very aggressive right away, and I was really, you know, very much for that. At the time, and at the time, you know, being as young as I was, I didn’t realize what a wonderful thing that was just to go that way.

Cheryl:  04:51

Yeah. Yeah. Well, and that’s, and I’m just curious if 10 years in, had you started having any, like, deformities or anything like that or were you more well-managed when you started the biologic? 

Dr. Kimberly:  05:02

No, I would every day when I get in the shower, I would stretch my hands out, because that’s where it started for me, it was my hands. And trying to wear good shoes for my feet. Luckily, for me, my big joints weren’t affected unless the inflammation got really out of control. I have like a sequence throughout, you know. And so, it was mostly my hands. And, you know, I think my education really helped me because I was able, I knew how to keep my fingers, you know, from deforming, and how to keep track of what was getting tight and how to stretch it out. And so, I knew that, and I was very aggressive with that at the beginning. 

Cheryl:  05:43

Well, and that’s so, I know both of us are so motivated to help other patients, you know, living with inflammatory arthritis. And it’s just it’s such a shame that all newly diagnosed patients aren’t given, you know, access to physical therapists or therapists to help them. There are so many things you can do, like you mentioned, that they’re very specific that the, the kinematics, kinesiology of the human hand is so incredibly complex, you can’t just intuitively figure it — I mean, it’s better than nothing, you just kind of intuitively, like, I’m gonna move my fingers the way that they move, and just do something. But still, sorry, I’m getting off on my soapbox already.

But yeah, speaking of, you know, being a physical therapist, and I think a lot of people would be curious, like, what is your — we always talk in occupational therapy about our elevator speeches — for you, like, do you have an elevator speech if people say, what, what does a physiotherapist do to help someone with rheumatoid arthritis?

Dr. Kimberly:  06:39

I do actually. I can walk through your life with you, find out what are the things you’ve given up, and can we get those back? What goals do you have for movement, for life, for your roles that you play every day? Whether it’s work, school, home, you know, mom, dad, you know, whatever your life role is, what are some of the paths you need to be able to do to fill that out? I can help you with that. And it’s not just about going to the gym and exercising, and it’s about how to manage your life.

Cheryl:  07:12

Wow, that’s so congruent with occupational therapy, too. This is like why we’re like the dream team. Yes, so true. It’s about using the modality of physical activity to get at whatever the underlying ‘deficits’, quote unquote, or challenges are that are preventing you from performing your daily activities. I don’t know if that’s, if I’m putting words in your mouth. But that’s another way of putting it. 

Dr. Kimberly:  07:37

Yeah, that’s fine. It’s, you know, it’s, well, we give up a lot of things when we are in pain, and you know, what’s the first thing to go? It’s usually the fun stuff, the leisure activity, the things we like to do, right? Or, you know, those roles that maybe, maybe we don’t go to church, and that’s important to us, because of mobility issues, or access issues. You know, those are things that a PT can help you with, those are important. And, you know, trying to get some of that back. And, you know, one of the first things I ask my patients is, what do you enjoy that you’re not doing? And let’s see if we can figure out a way to bring it back into your life. It’s not always about walking, running, lifting weights. Yeah, it’s about, it’s about everything else, the other 99% of your life. 

Cheryl:  08:24

Mm-hmm. I mean, I so resonate with that. And it’s about doing a — doing what you love. I mean, that’s like such a, I mean, who does, who wouldn’t want to see somebody who can help them, but you know, I’m feel I’m like on an advertisement right now, like, you should do PT! That is, we’re trying through this podcast episode, you know, spoiler alert, going to try to help people bust some of the myths they might have about physical therapy, like I was telling you before we started recording, it’s like, I kind of had this impression, too, that physical therapists were kind of, quote unquote, ‘gym bros’, like people who just care about pumping that iron and like, you know, getting huge muscles.

And, you know, and unfortunately, I have had, you know, seen patients who’ve told me, you know, “Oh, my gosh, I had, you know, I had a bad experience with a physical therapist,” and that’s just about, unfortunately, with whether it’s counselling, whether it’s rheumatology, whether it’s your pediatrician, there are some good providers, and not so great providers out there. So, one thing I would say is, if you had a one bad experience, you know, try to seek out somebody in the physical therapy world who really has experience with an autoimmune inflammatory type of arthritis, as distinct from osteoarthritis. What would be something else you would want patients to, you know, or what is something else you wish patients would know about physical therapy or like any myths that you might want to bust?

Dr. Kimberly:  09:51

Well, we, you know, we, again, exercise is kind of our big thing. We’re movement specialists. But there’s a lot of things that that relate to move but that aren’t exercise, you know. We can talk in general terms about things like diet. I can talk to you about your fatigue and how to manage your fatigue. We can talk about how to modify activities, if they’re not seeing an OT for that. I can talk about, you know, how to modify some activities to make their workflow better. How, you know, how can we set up your workstation, how can we schedule your day to kind of balance activity with rest. So, it’s not just about exercise, it’s about all of the other things that you need for good movement. You know, you need nutrition, you need energy, you need, you know, there’s a lot of other things there.

Cheryl:  10:41

I think that’s really good. I’m working on, like, pausing and digesting the things people are saying, because my brain works that like, you know, there’s a saying about people with ADHD that they have like a Ferrari mind with bicycle brakes. I don’t know if you’ve ever heard that, but I’m working on developing some Ferrari brakes, because that’s a really beautiful, important statement that is about analyzing your movement, the way that you move through this earth and through your physical environment and your energetic environment, not in like a woowoo sense, but like in a fatigue sense. Yeah, like, what it is that’s important to you, yes, let’s go to the woowoo, you know?

And saying like, you know, if I can pick up my water bottle with two hands, that disperses the weight of this water bottle across two hands, and if I put my fingers in a certain way, it’s going to put less stress on them than if I pick it up like this, you know? Sorry, this is this, I should know after a hundred episodes, this is an auditory medium. If you’re watching it on YouTube, you can see the video.

But if you pick it up with one hand, it’s going to be, you know, all those little micro interactions that you have throughout your day. You can have a physical therapist or occupational therapist, that is one area where we definitely overlap, that we can analyze and kind of use our detective brains to figure out how could you be more efficient, or how could you move through the world with more ease and joy, you know. And you mentioned —

Dr. Kimberly:  12:10

We can talk about sleep.

Cheryl:  12:11

Sleep, yes. Sleep. The forgotten lifestyle factor.

Dr. Kimberly:  12:15

Yeah, yeah. How do you sleep? Is there a position? You know, for me, I had a hard time sleeping. I would wake up all the time, until I found the right bag. When I found the right bed, I slept through the night for the first time in probably 30 years. And I was like, wow, that’s what that’s like?

Cheryl:  12:32

Was it — now everyone’s gonna want to know, was it like a more firm mattress? Or was it a less firm? Like, what was it for you. I know, we’re all different. But just —

Dr. Kimberly:  12:40

Yeah, no, it was something that I could adjust. I could adjust. So, which was nice. And I can also adjust the head and the foot, which which was nice. And I could change it because, you know, our disease is very cyclic. Like, it comes and goes and ebbs and flows. And so, what one position might not work one night, works great the next day. And with a more adjustable sleeping surface, I found that that worked very well for me to get a better night’s sleep. 

Cheryl:  13:09

That’s so crucial. It’s so funny that you said that. Because in one of the Rheum to THRIVE support groups that I facilitated, there was a physical therapist who also has RA. And I asked her in all your experiences with RA in your own life experience, like I said, I’m on this ever long quest to find like the perfect set of pillows. And because I hurt my neck and a car accident in 2016. And so, there’s like, you know, there’s acute illness, acute injury, turning into chronic pain from that injury, layered on the inflammatory arthritis.

And so, she was like, honestly, this is gonna sound so, so simple. She’s like, but after so many years and trying things herself, she’s like, my best set of tools is like a set of whatever pillows that you have come up with, a set of pillows that’s like a variety that works for you. But also a set of small to medium hand towels that you can roll up exactly into the spaces. And I was like, it’s so simple. It just might work. 

Dr. Kimberly:  14:09

You can stuff it in the pillowcase along the long edge of the pillow. 

Cheryl:  14:14

Oh, that’s next level. 

Dr. Kimberly:  14:16

Yeah, it’s very simple. There are some pillows in my house my kids would laugh about it because I would try them and discard them. And so, they go on another bed in the house. I have more pillows and a woman needs

Cheryl:  14:29

We need like a pillow collect or support group. But, you know, so you’ve mentioned so far, just in our brief conversation, you’ve mentioned your physical activity, sleep, diet and nutrition. Coincidentally or not so coincidentally, these are the three main things, well, that were looked at at the 2022 American College of Rheumatology guidelines for exercise, rehabilitation, diet and additional integrative interventions for rheumatoid arthritis. I just tried to say in one breath, but I couldn’t. And which is, this has become like, for me, it’s like — I don’t want to say Bible, because that’s a totally different thing — but it’s a really important synthesisation document that kind of, that I would love to hear from your standpoint as somebody who helped create these guidelines.

Well, okay, just skipping to the end really quick, there is a chart that is the results of this many years long research-based process that has things in colour codes that are to do with exercise, rehabilitation, diet, and additional things. And we’ll talk about those. And so, it’s a starting point, because lifestyle is so overwhelming for RA. That this is saying, look, not just cherry-picking certain articles that go with what I already want to do, but what is the breadth of the research saying is going to give you the most bang for your buck as a starting point.

And so, I’m sorry, I just like rambled about it. But, you know, tell me, I would love to hear a little bit more about, you know, how do documents like this from the American College of Rheumatology, how did they come about? What was involved in creating this?

Dr. Kimberly:  16:15

So, this was my first time working on a guideline. So, it was my first one. And I was naive as to how much work, you know, it’s a good two-year process. And it takes an entire team with people to take thousands, literally, of articles, and condense them down into the ones that make it at the end, you know. So, you end up condensing them down to 100 or so or less. And it is such a huge long process to condense them. You first, you read the abstracts, then you read the articles of the promising ones. And each time you’re knocking articles out that don’t make the cut.

And so, they are left with a pool of articles a year later, that you can now try to synthesise into recommendations. What recommendations from what we read can we make with either a strong recommendation, a conditional recommendation, or a weak recommendation, or no recommendation. And that’s what the guideline does. And that chart is really a great place because a guideline is pretty long. But the chart, the summary chart is nice because it colour codes it, like you said. The only, the only strong recommendation was exercise. That was the only strong recommendation out of that whole two-year process.

Cheryl:  17:40

And by the way, that included looking at — so you have 19 people all of whom have professional degrees and are experts in their fields, you know, PhD — I’m looking at the people’s names, you know — DPT, doctor of physical therapy, doctors, regular medical doctors, occupational therapists, social worker, master of public health, PhD. And they, they’re looking objectively at all this data. And so, consistent engagement in exercise was more strongly recommended than comprehensive physical therapy or comprehensive occupational therapy.

So, it’s like, oh, wow, we went through our degrees and actually, if we just got people to exercise… No, it doesn’t mean that it’s not effective, right. So, it’s just, it was, I think, it’s important to look at the this objectively and say, like, wow, that if you’re a patient, you’re like, “Why does my doctor keep harping on exercise,” like, or that seems so unrealistic, or it just seems like they’re not listening to me because I’m in pain, and you can’t exercise if you’re in pain, you know? It’s like, it’s because the wealth of the evidence is stronger for exercise or engagement in consistent engagement in physical activity than it is for diet. It’s just objectively true.

Dr. Kimberly:  18:51

Exercise is the best medicine that nobody uses. It’s hard, you know, but it’s hard, right? Asking people, you know, if I’m asking somebody to exercise and eat right, those are two things we don’t want to do. Yeah, it’s hard. And I understand it is hard. So, that’s why it’s really important to start with baby steps so that it’s not overwhelming and it’s not as, it doesn’t have to be as hard as it sounds.

Cheryl:  19:20

Yeah, you totally have anticipated my next question. And it is, how do you — so if someone knows this, and they’re like, I’m just going to look at this chart, which is on page two of the guidelines summary. I’m gonna link it. There is three separate documents that I think are really important.

One is like the peer reviewed, the 13-page peer reviewed journal article that like summarizes all this for like professionals. And then, there’s the 2-page summary.

And then, there’s the 564-page Appendix 3, supplemental appendix evidence report. And I know that a lot of people in the healthcare field knock social media or think patients are just getting misinformed on there. I’ve had a lot, since I’ve been talking about these guidelines, a lot of people have asked me, where do I learn more? Where can I see the original articles, summaries of these articles that were the base that formed the basis of this report? And I’m like, look, you can go look to the section on diet or on supplements. Why are supplements not recommended? You can look on this document on page whatever, one of the pages between 1 and 564. You can look at and see which where it’s going to be. A

nd that these are listed as — okay, we’re gonna get to how people can get started. But I wanted to say, on this Appendix 3, because I’m getting real nerdy here, but it’s really, it’s really interesting, because it says, so the way that things are framed in these guidelines is, for example, on dietary interventions. Question one, “Should patients with RA use a formally defined diet?” Question two, “Should patients with our I use a commercially available dietary supplement?” So, number three, “Should patients with RA who are overweight or obese receive a weight loss intervention?” Like, you’re going through each of these questions. And then, you’re saying — is it right to say that you’d be synthesizing the research within each of those?

Dr. Kimberly:  21:09

Yeah, the questions is where we start. They’re called the PICO question. And that’s where we start the whole process, is coming up with the questions. Here are the questions we want to answer with the research, and then we can target our search.

Cheryl:  21:22

Yeah, and it’s just, it’s I love this because it’s so practically relatable to what patients, like, these are literally the things people ask me. And the support groups, where I created my own self-management program, which coincidentally standardized self-management programs are conditionally recommended. So, that’s good.

Again, strong recommendation, there’s only one, and that’s consistent engagement exercise. There’s a lot of ones that are conditionally recommended. Which can you remind us what’s the difference between a strong recommendation and a conditional recommendation?

Dr. Kimberly:  21:52

So, strong is that the evidence, the evidence is strong to support the use of this for most people with the diagnosis. Conditional is that the evidence isn’t as strong. It’s moderate. But so, for certain conditions or certain people, it works really, really well.

Like, say, take physical therapy, for example. Not everyone benefits from physical therapy. It’s conditional. You know, if you see the right physical therapists at the right time with the right treatment, you get a really good benefit. But they can’t say, is it always gonna help? No, we couldn’t find the evidence to say, yes, it always does. But exercise was pretty strong across the board. 

Cheryl:  22:42

And then, so in a way, it would almost be conditional recommendations are almost, in my head, like, there’s some caveats. Like, you know, it’ll probably help you, but it might not help you as much if X-Y-Z maybe you have a bunch of comorbidities or you have, you know, so a lot of stuff is in there, like, specifically aquatic exercise, you know, hand therapy exercises, splinting, orthosis, compression, bracing, and/or taping.

Which is, again, it’s kind of interesting as an occupational therapist and nerding out about this, because you’re like, or like joint protection, like how on earth is joint protection – what could it not be helpful with? Potentially, maybe just if you protect your joints too much, and you have immobility, right?

Dr. Kimberly:  23:22

A lot of the problem was not so much that joint protection was bad in an instance, but just that the studies weren’t strong enough. Maybe they had some bias in them. Maybe they didn’t have a large population. Maybe they weren’t well controlled. So, it’s not necessarily if it’s conditional it was bad for people. But it’s, there’s not enough evidence, strong, good non-biased evidence to say ‘Yes’.

Cheryl:  23:51

I remember seeing that for compression gloves. I really, I really dug into the research for that. And I was surprised, given the amount of kind of positive feedback I’ve seen. I know this is not a randomized control trial, right. But just in my own personal experience, I’m like, this really seemed to help people. But yeah, the evidence is just not objectively as strong. It’s not, there’s nothing wrong with it. There’s no evidence that it’s ineffective. But they’re not — evidence for it isn’t as strong.

So, actually, I will stay on this train of thought before we go into getting started with movement and exercise, because I think this is important to understand the difference, if we’re looking at this chart, again, Page 2 of the integrative RA treatment guideline summary, which is just a two-page summary. This is the chart that has different greens and reds. None of the things were strongly recommended against, but four of the things were conditionally recommended against.

So, what makes something — I’m interested in these four, I’m going to say about that because I think these are interesting, because these are some of the things people ask me the most about and that I see the most misinformation online about, especially diet. So, eating any formally defined diet other than Mediterranean style is conditionally recommended against. Any dietary supplements are conditionally recommended against.

That does not mean for you as an individual, that the keto diet or the Paleo diet or vegan or specific other, you know, autoimmune protocol, there’s evidence that that’s going to be harmful to you specifically, but at the population level, looking at large numbers of people, right? That these, there’s something about these, it’s not just not that helpful. It’s what makes it conditionally recommended against?

Dr. Kimberly:  25:33

I think a lot of the problem with, say, for example, diet, when you take a group of people and you try to do a study on how they eat, trying to get everybody to eat the same way for a certain number of weeks is impossible. Unless you have them in a very, a very artificial type of an environment or where you’re actually providing the food for them. Which again, it makes it very well controlled. But is it realistic? And we look at both of those things.

And so, you know, we can’t, it was really, it can be really hard to recommend something when the studies are kind of all over the place. If you, well, if you control it really, really well, it’s not practical, and it’s not realistic. So, you have to — finding that balance is really hard.

So, there is a, you know, the Mediterranean diet was one of the ones that it had more, it just had more evidence, more studies were done on the Mediterranean diet than anything else. So, that’s the one that got the conditional recommendation. And then, you couldn’t make any recommendations about anything else. 

Cheryl:  26:44

Yeah, I think it’s worded so — you just summarized it really well. And I also, I think that the wording is really powerful or really helpful in the 13-page journal article itself. I’m sitting here looking at Page 8 here. And it says, “We conditionally recommend against adherence to the formally defined diet other than Mediterranean based on very low to moderate certainty of evidence demonstrating no consistent clinically meaningful benefit from following other formally designed diet strategies on physical function, pain, or disease activity specific to RA. In addition to the level of certainty of evidence, this recommendation is conditional because of the burden and costs that accompany adhering to a formally defined diet and patient preferences are expected to differ.” 

I think, taking into account that’s what’s so crucial. What I often tell people is look, if, if there’s someone out there trying to peddle you, a way to manage your arthritis fatigue, that is really low cost and low time consuming, that’s like, you need to turn around and bounce on one foot for three seconds every day, once a day. You’re like, sure, like, what do I have to lose by doing that? Not a lot. But for some of the really strict diets that you are losing potentially your cost benefit analysis is, I’m spending these precious hours of my only life here on Earth obsessing over food, spending considerable money on something that may not actually end up working. I’m not saying against it, if that’s what you value in life.

And this is why context is so important. If you’re super rich, and you want to throw every single possible tool in your toolbox, that totally makes sense in your life. But if you’re like, look, I only have so many hours in the day, so much money, where do I want to put my energy? That’s where the guidelines can be helpful. Or would you agree with that? Sorry. 

Dr. Kimberly:  28:33

Oh, absolutely. Especially when you think about someone with RA or any rheumatic disease, your energy is limited. So, you need to be very selective about where you’re putting that energy. I tell my students here, I say, if you’re going to, you know, prescribe an exercise, for example, it better be a damn good exercise. Because if they’re going to expend the energy to do it, it’s got to be worth doing it.

Cheryl:  28:57

Yeah, yeah. And I think the supplement part is important to dig into the details, for people who are interested in reading more, because it talks about the idea of having not — it’s not to say that the vitamin contained in the supplement is necessarily bad or ineffective, but their voting panel supported a food first approach, but recognize that the dietary supplements may serve a role for bone, like vitamin D, and cardiovascular health, like fish oil.

But then the recommendations refer to those produced by the US Department of Agriculture and Health and Human Services and the Heart Association. So, it was just interesting that they kind of, had those caveats in there for the supplements. Because that’s something a lot of people ask what ‘natural’, quote unquote, supplements can I take?

Dr. Kimberly:  29:43

And I think I think part of the conclusion there was that the supplement recommendations aren’t, right now, we don’t have any evidence to do anything different for someone with rheumatic disease versus somebody without. I mean, the USDA and their recommendations are fine for most people, and including people with rheumatic disease. There wasn’t a differentiation that could be found.

And there’s so much conflicting research out there, as you know, on supplements, and what to take, and what not to take, and does this work, and does that work? And so, it, it really there really wasn’t a clear conclusion other than what the guidelines already are established for the adult population.

Cheryl:  30:28

Yeah. Yeah. That’s really important to know that they’re talking about supplements specific for RA, yeah. And I think the last one, before we go on to diving deeper into exercise would just be I think it’s actually probably the best place I should have started with, with looking at the recommended against, conditionally recommended against, is chiropractic.

Because to me, as a patient looking at cost benefit. The most important thing to me to start with is: could this harm me? Could this harm me in a way that would last a long time? And it’s very possible that, you know, this, I’ll just say from the guidelines themselves, you know: “In the absence of evidence we conditionally recommend against chiropractic therapy vs. chiropractic spinal adjustment directly for the management of RA because of the potential cervical spine complications that can occur.”

So, that’s, to me, that was pretty important to take into account that you could actually get hurt doing this. I mean, supplements, there’s certainly supplements people have been hospitalized for. Dr. Kara Wada, if you remember that episode, she’s an allergist immunologist who has Sjogren’s and was hospitalized due to a liver side effect of a supplement she had been taking to try to naturally manage her Sjogren’s. And so, there are harms that can come from supplements, or for any activity or exercise if you do overdo it and hurt yourself. But chiropractic is like directly, potentially, can be harmful. Is that how —?

Dr. Kimberly:  31:57

Yeah, and a lot of that is, you know, even for PT, you know, we do do some manipulations if you’re properly trained. And that’s like the number one contraindication is somebody that has RA, particularly if it affects their neck, then you don’t touch it. You know, so that, that is actually a really big caveat. 

Cheryl:  32:19

Yeah, that, and so if you don’t know, having rheumatoid arthritis can lead to — I don’t know how to pronounce it — cervical instability of the atlas and the axis, like C1 and C2, which are like the vertebrae right below your skull, where your brain stem is. It’s kind of important for like breathing and life.

And unfortunately, you might have heard of people — I’m not saying all chiropractors are going to harm someone, but it’s a, by any means, majority of chiropractors obviously are doing, you know, something that people perceive is helpful, otherwise, it wouldn’t continue to exist as a field.

But, you know, if something someone’s about to do, there’s a risk benefit analysis has to occur. If the potential risk is very, very high, the potential benefit needs to be very high. And the potential benefit is very, very inconclusive of chiropractic. Lack of, you know, there’s a lack of benefit from chiropractic therapy for RA. And indicated that this approach carries a perceived burden and cost.

And it’s important to mention that because this part of the guideline actually talks about the voting panel and the patient panel. So, I mentioned earlier because I was being kind of an academic snob saying that, you know, I am a little bit of a snob — not snob, but to me, that means something – I’m not going to be, you know, it means something that people have devoted their life to these things.

But also, it means something that patients have, patients are the experts in their own care, and patients are have lived experience that contributes to these guidelines, too. So, the voting, there was the voting panel of the experts. And then, there’s the patient panel. And they were able to vote on these as well. Is that right?

Dr. Kimberly:  34:00

Yeah.

Cheryl:  34:01

Yeah. It’s really, it’s really, I mean, yeah, I think, this is, again, I’ve been like proselytizing, if that’s the right word for this, telling people to check out this guideline, because you can, it’s like doing a lot of — a lot of people want to do their own research. And it’s important to do your own research on different interventions. But it’s amazing that someone’s already kind of, like, amalgamated the important, like many of the important research papers.

Dr. Kimberly:  34:24

It’s really the number of man hours of hundreds of people who’ve put this together.

Cheryl:  34:29

Yeah, it’s more efficient to start there, then just try to do it all on your own in other words. But okay, so, earlier 10 minutes ago or whenever, we’re talking about not knowing. A lot of people tell me, “Where do I start? I’m overwhelmed,” or, “I tried one form of exercise, and I felt worse and now I’m scared to try something else.” 

What do you recommend as a starting place. And I know I use the word ‘exercise’, but maybe for increasing activity. 

Dr. Kimberly:  34:56

But so, so yeah, I try to rephrase it this physical activity because, you know, exercise, what do you think of? We think, oh, my gosh, I’ve got to get changed. I’ve got to go to the gym. I’ve got to work out. And then, I’ve got to take a shower. And then, I’ve got to get changed again and then go.

But, you know, it’s a long process. And for someone with limited energy, that is exhausting. It’s exhausting just to think about it, right? But if you try to frame it more in terms of physical activity, you know, do you like to garden? That’s physical activity. Are you doing housework? That’s physical activity, though. WHO actually, the World Health Organization, has a statistic that I love. And it’s, if you can do five more minutes of physical activity than what you did yesterday, it improves your health.

Cheryl:  35:44

I love that. Yeah.

Dr. Kimberly:  35:45

I love that stat. And I tell patients that, too. You don’t have to start with, you know, an hour Zumba class three times a week. Maybe you start, you tend to only walk around your house, maybe you walk to the mailbox. If you only think you can walk to the mailbox, you walk a little ways down the street, you know, try to go a little bit further. You don’t have to, you know, travel the world right out of the gate. It’s baby steps, it’s just a little bit more walking.

Do something you enjoy. I really am a proponent of doing something you enjoy. What’s something that you dropped out of your life that because of the pain and because of the fatigue that maybe you want to try to do? And, you know, we can look at that I had a woman that she quilted. And I didn’t realize her quilting machine took up her whole garage. I don’t know how many times we put a pedometer on her and she was getting all kinds of physical activity. Never realized. I said, well, there’s your start right there, and you’re doing something you enjoy. So, it doesn’t seem like exercise, but it is.

Cheryl:  36:57

Yeah, I once heard someone use the phrase ‘incidental exercise’, which I really like.
Dr. Kimberly:  37:02

I like that. 

Cheryl:  37:03

Yeah. When I used to go swing dancing, I’d be like, well, yeah, I there is a, I understand there’s a benefit for me of physical activity. But the reason I went dancing was to see my friends and have fun, and listen to the music, and just the joy of the activity. And incidentally, it was also checking off for my daily physical activity. So, can you find things that you enjoy that can also give you that, that boost?

And I think one of the biggest barriers is this perception, which totally make sense if you don’t know the research, that if I’m fatigued, I feel tired and lack of energy, why are you telling me to expend more energy? And I think if you think about like the people’s perception of like the Spoon Theory, which is that you only have a certain number of spoons you get started with the at the beginning of the day, and every activity you do uses a spoon, you’re like, well, why am I going to use some of my spoons on exercise?

Now, I know you — I know you know I know, we both know that the evidence is actually opposite, that exercise or physical activity leads to improved fatigue. How do you get people to understand this until they try it? Because I did not, I was like, I was just mind blown when I learned that. I was like, why does this make sense? It does not make sense. 

Dr. Kimberly:  38:26

Yeah, it’s counterintuitive, right? It’s like I’m tired and I exercise, then I’m going to be more tired. And, you know, what I tell patients usually is, the answer is, yes, at first. Give me 2 weeks is what I tell them. Give me 2 weeks to let your body adjust. Because there are a lot of things physiological that happen with pain when you start to move, that happen with depression when you start to move. Pain and depression are also affected very positively by movement and by physical activity.

And I think, this is my own theory, I think that all feeds into the fatigue. And that’s where a lot of my research is right now is on fatigue. And I think once you start moving, I think some of these other things come into effect. You start to feel less pain after about 2 weeks. Like I said it you know, like all of us, we start a new activity, it makes you sore, right? But you have to keep going and let your body adjust.

And so, your pain goes down, your mood improves, your fatigue improves, your sleep improves. And then, eventually your strength, your range of motion, your all of those other things that we think of as the traditional benefits of exercise kick in. But you got to give it that 2 weeks and you’ll feel better eventually. Like I said, at first, no. You’re gonna feel tired because you’re not used to it. Your body has not made those proper adjustments.

Cheryl:  39:56

Yeah, it reminds me a little bit of like, and I know that this is not like to go into massage as a modality for RA specifically, but when I had gotten a couple of massages in my life, prior to my car accident in 2016. My joints definitely hurt more after a massage. I was like, this is weird, like, this is not helpful for me.

So, then when I started getting them consistently for my neck after my car accident, I realized that it was — this is my Layman’s theory, only slightly informed being an OT — that I think what happened is that initially, yeah, the first couple massages, I almost felt because, like, well, a lot of your immune system is in your lymph, right, or circulating through your lymph. So, you’re loosening up all this lymph that’s all been like kind of congealed together around and in your whole body. And so, it’s kind of, initially my joints, all of them hurt worse after a couple of massages. But then when I started getting them more regularly, that effect went away, where it was no longer kind of inflaming my joints.

And so, I think exercise, potentially exercise is moving your lymph, too, right? It’s moving, it’s all your circulation, everything’s pumping. And I just think it’s, yeah, it’s like, if you want to exercise, the benefits of physical activity for rheumatoid arthritis are so far beyond the actual joints, you know.

It’s almost ironic, because you’re like, what other intervention, do we have a natural intervention other than sleep that can help fatigue? Movement. Yeah. And they actually, you know, I can give you all some of the, in the show notes, some of these citations, but for my self-management program, I put together this list of like, here’s what exercise — and I just used the word exercise — is associated with for rheumatoid arthritis: less pain, stiffness, less fatigue, better sleep, improved strength, not surprisingly, but improved mood, improved cognition, which what other tools do we have for brain fog that actually work? Again, well, everything’s interrelated. So, you’ve got to sleep, too.

And but that’s just, you know, movement helps your sleep, decreases risk of cardiovascular complications. Extremely important for us, because of the comorbidities. And then, decreased risk of osteoporosis because you’re load bearing on your bones. So, you’re like, oh, my gosh, this is not just about building muscle to support my joints mechanically, although that’s helpful. It’s about these systemic symptom improvements. 

Dr. Kimberly:  42:20

Oh, yes. I had got my first DEXA scan of my life. At 56-years-old, I got my first DEXA scan ever, and I’m proud to say, it was fine. 

Cheryl:  42:30

Mine was — I got mine, like, five years ago or something. And I was like, oh, my God, thank God. I was a runner for so many years, too. I was wondering if that was why.

Dr. Kimberly:  42:37

I’m a black belt. And that’s where my, yeah. 

Cheryl:  42:40

Wow. Well, and okay, so, that’s amazing. Yeah. And I’m glad that we talked about fatigue and exercise, because again, I think that would be logically, like it logically would make sense for you to be like, I’m tired. Why are you telling me to move?

But hopefully, this little conversation has helped you understand that the evidence — and they’ll take randomized controlled trial evidence.  Half the people are not moving, the other half are in exercise intervention, and they consistently through multiple studies are showing improved fatigue levels. Which is really exciting because your medications don’t always work as strongly for fatigue as they do for pain, right? They’re like different animals, which is so fascinating how sometimes they’re on the, I joke that they’re on the same Whack-A-Mole, like the old, you know, arcade game, versus they’re on different Whack-A-Mole’s sometimes

. But one of the things that I found helpful, tell me what you think about this, but when we talk about getting started for exercise, also thinking about — or movement, physical activity — thinking about three main types has helped me, like, the pillars being cardiovascular, getting my blood pumping to a moderate level, and weight or resistance training or getting my muscles challenged, and then stretching. Like, just three kind of separate buckets. Do you also — and I know that that seems overwhelming to some people probably because it’s like, oh, that’s three things. I just want to do one thing. 

Dr. Kimberly:  44:08

It’s fine to start with one.

Cheryl:  44:10

Yeah, yeah.

Dr. Kimberly:  44:11

You know, it’s fine to start with one. But those three things are important because they’re important depending on what stage of your disease you’re in, whether you’re in an active flare-up, versus inactive disease, or coming out of a flare. Those three things, you’re going to use those in different ways, which again, PT, OT can show you how to do this.

You know, during a flare, resistive exercise isn’t appropriate. It’s too painful. It’s too damaging to the joint. Range of motion, light stretches, perfect. You know, coming out of a flare. Now you can add that cardiovascular stuff that’s not real heavy into a joint strength, but it gets the heart pumping. You know, you’re swimming, you’re biking, you’re walking, things like that. And then, once you’re in your disease is inactive, that list of exercise is a great thing to add at that time because now your joints can handle it better. And so, the type of exercise is really important, as well as the amount.

Cheryl:  45:11

Yeah, and this is I’m going to draw from my own completely anecdotal evidence, because I haven’t seen any studies on people with RA that specifically, that isolate resistance training and muscle, you know, muscle building from the cardio and stretching. But I have, in my own — they call it self-evidence, right. You develop your own — symptom tracking is developing self-evidence, evidence in your life.

And so, last September 2023, I started doing two personal training sessions a week. I told myself, I’m gonna start with personal training at my husband’s job because it’s a spouse benefit. But I was like, if these people don’t know what they’re doing, I’m going to PT, because I didn’t — I was kind of skeptical because, again, quality control can vary, but I was very fortunate to — one of them is a pre-PT student, she got into PT, getting her doctorate in PT, but she’s taken a year off to earn some money before. So, anyway, she’s incredible.

And I have been blown away. So, I have gained, definitely my goal was to gain weight, gain muscle, you know, as I was starting to feel weaker, or I could just feel it, just, you know, being in my 40s now, and not — I was always, I’ve always been into cardio, I’ve always liked that kind of endorphin high, the runner’s high all that stuff. I haven’t done running the last like 10 years or so. I’ve been like doing the exercise bike, but I hadn’t been doing — I’ll say, oh, my upper body just feels so weak, like my arms and my back, and my posture is getting bad. So, I’m like, okay, I’m gonna do weight training.

The benefits, I was hoping that I would get better posture and, you know, feel in my body more strong. Those were my main, I knew all these other benefits are probably potentially going to happen. The two huge things that surprised me that have been so noticeable have been improved energy, decreased fatigue, and mood. Like, I think sleep has to do with it all, too. But I was — I don’t know if, I’m just sharing this for anyone listening in case you’re like, because sometimes people are like, I don’t like the cardio because I don’t like getting sweaty as much, although you do sweat when you weight train.

But I was really blown, I’ve been really blown away by how much, you know, better I feel now that I’ve been in this muscle training and, you know, life now. And I wasn’t, I’m not aware of, again, any research that totally isolates the resistance training. But it’s been a really positive thing for me if you have access to like personal training or PT to help you build muscle. That’s my little words of encouragement, I guess. 

Dr. Kimberly:  47:41

Yeah. And you know, for adults, you know, the American College of Sports Medicine recommendations for physical activity are the 30-minutes a day, five days a week of cardio, but also two days a week of resistance training. And that’s for all adults. And there isn’t any reason why somebody with RA can’t do that in a modified way. 

Cheryl:  48:04

Exactly, every day of the week. I got it. Yes. 

Dr. Kimberly:  48:06

Yeah. You got it. You’re there. And so, the, you know, those general guidelines for adults, they count for people with rheumatic disease as well, it’s just you probably have to start much smaller and maybe work your way up.

But anything, if it’s not 30 minutes, and that 30 minutes can be broken up into 5-minute intervals. It doesn’t have to be 30 minutes all at once. If you’re doing 3 10-minute sessions of whatever, walking, swimming, biking, whatever exercise you like, gardening, you know, something that makes you a little bit breathless, you’re doing something for your heart.

And if you’re lifting something that makes your muscles tired, you’re doing resistance activity. Even if it’s not a formal thing. You know, you’re taking the trash out. Yeah, that’s resistance exercise, you’re working in the yard, that can be both cardiac and resistance. And again, a PT, OT can help you figure that out and help you break it down and see what you’re already doing that you don’t realize.

Cheryl:  49:13

A hundred percent. Yeah, and when we say PT or OT, we’re saying like physical therapist or occupational therapists, just I always try to listen for, like, what might someone people listening will say like, “What are they —? What did they mean?” Yeah, the lingo and I think, I think for me, it’s helpful to separate the three, the cardio from the muscle from the resistance training to the stretching. Not that certain activities can’t hit all three, like, yoga is a good example when that definitely hits the stretching and resistance training sometimes depending on what the positions are, or a lot of cardiovascular stuff is also helping build muscle.

But, you know, a lot of times people don’t understand, going back to something we talked about the very beginning, the minutia or the amount of little tiny tendons and muscles in the human hand and how helpful it can be to do like a stretching routine and that a physical therapist or occupational therapist can give you a set of, your home program or recommendations. so you don’t have to be looking at this, figuring it all out on your own, you know.

Dr. Kimberly:  50:22

Right, and they can break it down. And they can say here, this is what you can do. If you’re having a flare. Here’s what you can do if you’re coming out of a flare. Here’s what you can do with your disease is pretty stable. You know, there should be, it should be three parts.

Cheryl:  50:35

Yeah, yeah, that’s so key. I think that’s, yeah, it’s not a static set of recommendations that you’re like manically doing every single day, like, “Okay, well, this is my plan, I have to, I have to do 30-minutes of moderate intensity cardio today. So, I’m just going to do it. Even though I’m in a horrible flare,” no, you need, we have to build in that flexibility. So, I think that’s so helpful that you do that with your patients.

I just want to make sure — I keep going on my own tangents — but what are some of the things that in the clinic that you run up there in Maine — you’re still okay to go a little over? Is that okay? Sorry, I didn’t mean to be, it was a leading question. But, you know, what have been some of the things that people have, like, you know, I gave my little anecdote of my experience, my positive experience with increasing my, specifically, my resistance training, muscle building. What are some, do you have any other like, kind of success stories or any — I’m sure you can probably pull out of anecdotes — like what are some of the things that people tend to say that surprised them about improving their physical activity or things that they’ve enjoyed?

Dr. Kimberly:  51:48

Oh, my favorite one was a woman, I was doing a patient education summit that was part of my research, I was doing some patient education groups. And one woman we were talking about fatigue, and we were talking about brain fog. And she’s like, “I thought I was getting dementia.”

Cheryl:  52:04

 Oh, I’ve heard that in my groups too.

Dr. Kimberly:  52:06

Yeah. And I said, no, brain fog is a thing. That is a thing. You know, I mean, if you could see my office, I have like Post-Its everywhere, you know, just to help me remember, yeah, I’ve got them all over the place. And she was just amazed that that was real. And it wasn’t her losing her mind. It was a result of her arthritis and, you know, her pain. And you know, we do a lot of pain science education about when people start to kind of fall into that chronic pain behavior, and that chronic pain, you know, it’s like a sinkhole. Once you get in there, it’s hard to get out. A

nd talking about chronic pain is real pain. But your body is reacting to it in a way that is not productive for you. And once you can recognize that, and we do a lot of education about the pain science that’s kind of coming out. It’s a it’s kind of a hot topic in PT right now, in neuroscience. And, you know, it’s like anything, some people respond really, really well as soon as they realize what’s happening in their brain in response to this pain, which, again, is real. And perception is individual, but pain is real. And knowing how to manage those, that pain in their head before they manage it outside their body.

Cheryl:  53:32

Yes, I think one of the — I don’t know if I’m reading between the lines correctly — but one of the things when you said, you know, chronic pain behaviors, or a common one is guarding or resisting movement, not wanting to move. And it’s again, it’s intuitive, it’s logical to say in the same way that with fatigue, I’m tired, it does not make sense to spend more energy. We’re told listen to your body. Well, my body, pain is the body’s saying don’t do anything, like, ‘Don’t move this thing’ it hurts, I’m telling you to stop.

But with chronic pain, you have to learn that that body, that signal, is actually giving you information that’s not a hundred, it’s a too big response to a small stimulus. It’s like you have a pot of water that’s getting a tiny bit warmer. And for some reason, the thermometer is like oh, my god, it’s boiling. Wait, wait, stop! You’re like, yeah, so I don’t know, this is probably not the best analogy but, yeah, that we have to learn everything is so much more complicated than it seems at first, right?

It’s you have to listen to your body to understand your own body’s rhythms and if you’re in like a massive flare, but if you’re not in an overall systemic flare, and your body’s, you’re having some stiffness in a certain joint, movement is actually going to relieve that stiffness more so than resting, right.

Dr. Kimberly:  54:54

Yeah, yeah. It’s called centralization of pain is the technical term for it and, you know, when the pain centralizes, it does, your body reacts like it’s a four-alarm fire when there isn’t actually damage being done because pain means damage, right. And so, usually that’s the cycle. But what happens with chronic pain is the pain now is reacting so high that it’s like there is damage but there really isn’t.

And so, recognizing when there’s damage and when there’s not is a really big milestone with chronic pain, being able to make that, to distinguish between the two, it’s amazing the difference once you, you know, and a PT can help you through that process, that cognitive process, help figure that out. 

Cheryl:  55:46

And especially if their PT is more trained, if they’re up to date with current science, pain neurosciences. Like you said, it’s really changed a lot. They used to send me, they used to put, you know, I’ve interviewed people for this podcast who were in serial casts as JIA patients. I mean, like, which is the absolute worst thing we know now to do would be to immobilize the joints of people in this situation.

And so, I’m going to refer you guys listening back to Episode 93 also with pain research, Dr. Afton Hassett, you probably know her. I don’t know if you know her from University of Michigan. But she’s done a lot of great education as well on pain science. And she has a great book that’s kind of disentangling understanding chronic pain. So, ‘The Chronic Pain Reset’, which I think is great.

So, and going back to the kind of the concept in general of like, understanding that there are these, we have these pillars of physical activity — the cardio, and muscle resistance training, stretching — and then we also have overall lifestyle pillars or lifestyle interventions, integrative treatments for RA. Like we talked about, exercise is one and then diet, nutrition, sleep and rest, mind — and another one that we haven’t talked too much about is mind body, or mental health, you know, managing our stress, managing your mental health.

And I’m gonna refer people listening also to one other thing that I created with a couple other, you know, of my rheumatoid arthritis friends, which is called like, I have made these charts and it’s called ‘Lifestyle pillars for rheumatoid arthritis: Each person’s balance is different’, and the charts are the four things: sleep and rest, exercise, nutrition, and stress management, which is kind of a catch-all for mental health. And how, if you’re putting out in a pie chart, how much of the pie is taken up by each one of those. For some people like Dr. Singla, half of it is sleep and rest. And then, nutrition is the second biggest one. For Renee, nutrition is half of it. And then, the other three are equally divided.

For me, it used to be, actually, it wasn’t as big because I wasn’t utilizing it as much. Now, I’m realizing what the bang for the buck I’m getting. So, I’m doing a lot of exercise, physical activity, and then sleep and rest. And nutrition is a small part. I’ve never had a nutrition intervention make a noticeable difference on my arthritis, rheumatoid arthritis. But because of this, because of understanding overall the benefits of like an anti-inflammatory, you know, Mediterranean style diet, I do still follow (it). That’s good for your health overall, you know? But other, yeah, so understanding, I think that it’s important for each person to get to the understanding that, okay, it’s not a one size fit all. Would you agree with that? 

Dr. Kimberly:  58:33

Yeah. And, you know, I actually think of it as a circle. And all these things, sleep, you know, exercise, fatigue, you know, pharmaceutical, because there is a pharmaceutical component, you know, all of those things, then lifestyle, things that we do, as well as our medications are in a circle. And anything in that circle that you can tackle helps everything else in the circle.

So, it helps it to be less overwhelming, because if I decide, okay, I’m going to work on say, exercise. Exercise is going to help my sleep, it’s going to help my fatigue, it’s going to help all the other things, and it’s going to help my medications work better, it’s gonna help me feel better. My depression is better; it helps everything else. Or let’s say I’d want to work on my depression. And I got to go see somebody and talk to somebody, a therapist, a counsellor. And then, that improves my mood improves, that helps me better able to exercise, and, you know, you can pick one thing to start. And it’s going to improve everything else. And then, you can try, you can add as you feel ready. 

Cheryl:  59:39

A hundred, yeah, a hundred percent. And I’m really glad you mentioned medication because I do talk a lot on the podcast about the importance of understanding that the evidence for arthritis, rheumatoid arthritis medications, is if you compare that to lifestyle interventions, you know, I think the latest research I saw was like around 95%, or, you know, maybe give or take, what, 10%, let’s say. And, you know, at the very least amount would be maybe 85% of people with rheumatoid arthritis are going to need to take medication to control the disease.

And my attitude about that has been to consciously choose to feel really grateful about that. And to kind of see that as a positive thing. I’m so grateful, there’s a lot of people friends I have with rare conditions that don’t have any medications, or any evidence-based thing to do. They’re just flying blind, you know?

So, it’s not an either/or. Most people who are doing lifestyle interventions are doing them in conjunction, it’s not like I have to choose one or the other. But we’re not, I don’t want to create like a false equivalency or whatever to say like these are just as strong as medicine. For a lot of patients, medicine is going to be, the pharmaceuticals will probably be the foundation of your intervention pyramid. These are things that at least you can control in your daily life a lot more than your medication.

Dr. Kimberly:  1:01:03

Right. And all those little things that you implement as you implement them over the life, over the course of my lifetime, I’ve implemented a lot of little things. I mean, you look at my kitchen, and it’s set up. I like to cook and it’s set up for someone with arthritis. I have, you know, the rocker knives, and I have all of those things, and I have it set up efficiently. Because that’s what I love to do.

And, you know, over the years, you implement all these small changes, and it really helps your longevity of your joints, and your mobility, and your movement. It’s not like a one-shot thing. It’s over the course of a lifetime. You can manage it, and you can be successful, and you can do the things that you want to do. You just have to modify it, and you just have to kind of work up to it. You know, don’t say, “I’m not going to be able to do this, this and this,” you know, again, find the right professional to maybe help you figure out, is there a way I can do it or do a part of this thing, whatever this thing is that I love to do? Because that’s part of the joy in life. And there isn’t any reason why you shouldn’t have joy, right, just because you have RA, right?

Cheryl:  1:02:16

Well, I think, yeah, for me, part of, you know, the overall, my overall endeavor here is trying to figure out, you know, how do we thrive with these conditions. And for me, along those same lines, I would just add that part of it, part of thriving for me has become an understanding and accepting that there may be things that I can’t do the way I used to do. I’m probably not going to be a soccer player, you know?

I still played, I was soccer player through college, you know, and I played with my husband when we first met. And that since particularly because of a car accident, and I don’t want to risk my neck through any headers or, you know, collisions. It’s not, you know, I think it’s important to give yourself space to grieve the loss of something that might be important to you, or for someone else that might be you get to a point where, you know, you use all the tools in your toolbox, you know, you’re going to physical therapy, I’m going to personal training, I’m exercising, I’m sleeping, I’m talking to my doctors about my meds and there’s going to be a point where you might reach a ceiling when you’re like, wow, this is as good as we can manage this and I still have X-Y-Z lingering symptom.

That’s when for me the therapy and having coping tools to say, okay, I can make space for this grief and this sadness about not be able to do certain things, but also make space for embracing all the things that can still do. And like you said, looking at what’s still possible and like with a joyful gratitude, you know?

I don’t know if that resonates to you at all. Do you have anything that you can’t do, because you seem like so functional. Like, what are you not doing?

Dr. Kimberly:  1:03:49

You know, I don’t know, maybe I’m just really stubborn. And I just, I play softball. I’m a second-degree black belt. I work full time. I raised my children. And, you know, I’ve had to modify things along the way. And, you know, I know how to do that. You know, as a physical therapist, it kind of comes naturally to me. And so, you know, I find that I live from my best days and not my worst. And so, I very rarely say ‘I can’t’. And, you know, if I can’t, I tried it. It didn’t work. It’s okay. I’ll find something else that I like to do. 

Cheryl:  1:04:32

Yeah, and I that’s a, that is a like compensatory approach sometimes is super helpful. Like, I ended up, for example, I coached my son’s soccer team when he was eight years old, you know? And it was a way for me to, you know, channel my love of soccer in a way that wasn’t gonna hurt — again, I would be playing soccer still on like a, you know, adult co-ed. If it wasn’t for my neck, I would. It’s just, it’s two concussions, just I had met multiple concussions as a kid, and then the car accident kind of put the nail on the coffin. And now I am how I am today (laughs). No, no, I’m not saying the saying the nail, I’m saying that my executive functions are very precious to me. So, I’m not going to put my head or my neck in any activity that I might get —

Dr. Kimberly:  1:05:19

It’s a choice that you made. It’s not life carrying you all along. And you’re just saying that you’re like, “Oh, I can’t do that,” no, this is the choice that I am making. And that’s important, to make that choice and not just say, “I can’t do that, because I have RA, I can’t do that because I have this. I can’t do that, because I’m in pain.” You’re not really making a choice there.

Yeah, to be able to make that conscious choice saying, “I want to coach soccer because I love soccer, and I’m gonna coach my son’s team.” That’s fun. And I did the same thing with softball. I coached my kid’s softball team, and it was fun. And, you know, a way to, again, find that joy in life and make a choice not let the disease carry you wherever it may land you, you know, if that makes sense. 

Cheryl:  1:06:10

That’s beautiful. I was just going to ask one of my last questions is I was like, what advice do you have for newly diagnosed patients, but I feel like everything you said has been so I think helpful to a newly diagnosed patient! But just because I gave you these questions ahead of time, is there anything else you would want to say to like a newly diagnosed patient?

Dr. Kimberly:  1:06:26

Build your network. Yeah, build your network of health professionals and support groups. You know, find your good resources online, your good reliable resources online, and, you know, become informed, become informed about your diagnosis, because then you can be an advocate for yourself. And I think that’s really important to understand what your needs are, and by having a support group and by having a group of professionals, PT’s, OT’s, counsellors, dieticians, you know, whoever you can afford and whoever you want to have in your life, that helps you become more informed, and I helped you advocate for yourself.

Cheryl:  1:07:06

I mean, you’re a hundred percent speaking my language in terms of having a support group. Yeah. And I think I’ve talked about this with some rheumatologists. I’m like, you know, the fact that you’re not proactively referring people to OT, PT, social works like it’s a tacit communication to these patients that they should be able to just figure out on your own. Otherwise, why wouldn’t they have told me to go to these places, you know what I’m saying? 

Dr. Kimberly:  1:07:31

Yeah, I asked my own rheumatologist. I said, do you refer people to PT? He said, “No.” I said, well, why not? As soon as they’re diagnosed, why don’t you refer them to PT? And he’s, well, it’s usually not covered. I said, that’s not gonna get covered unless the referrals are made when you keep referring, and then maybe the reimbursement will come.

But, you know, I said at the conference, we use that as an excuse. And I think there’s isn’t a reason why you can’t make a PT referral. And if the referral doesn’t happen, at least, it’s important. And you’ve signaled that it’s important by making that referral to the patient and to the insurance company. 

Cheryl:  1:08:09

And I’ve had this conversation, like, I’ve gone to Washington DC and I know you have done advocacy too. You know, all the major nonprofits do a lot of advocacy at the state and national level as well as, you know, American College of Rheumatology, Arthritis Foundation, all these places.

And I remember as asking in DC with the American College of Rheumatology in 2019, like, I don’t get, lie, I don’t get why don’t the insurance companies want to save money. A $150 or $200 one-hour physical therapy appointment is a lot cheaper than one month of my medication, which costs, you know, $5,000 or whatever.

And they’re like, the lobbyist was saying that basically, they don’t care about — and this is just, sorry, just a side note, but potentially helping people understand sometimes the preventative care is not covered, like preventative care with a PT or OT to teach you about how to protect your joints, even if you’re not in a horrible state yet, you know, if you’ve just got diagnosed. It’s not covered because they — this is what the lobbyist said — all they care about is their quarterly bottom line, making money that quarter, not saving money for their insurance business long-term, because people’s insurance is tied to employment. And so, they might change jobs.

Just like, oh, my gosh, that is just so short sighted. They’re figuring out about diabetes, because diabetes is so expensive and potentially deadly if not managed correctly, that they’re giving people access to certified diabetes educators. Well, what about certified arthritis educators? That’s what we’re trying to do.

Dr. Kimberly:  1:09:36

Yeah, arthritis, one in four people in the US, right? I mean, that’s — that’s another whole podcast.

Cheryl:  1:09:46

That is a whole podcast. Thank you so much. I asked you before and we can go over, and maybe I should have said, how much over can we go? 

Dr. Kimberly:  1:09:52

Like I said, I have no constraints. I’m good. 

Cheryl:  1:09:54

Oh, good. I really want to come visit you in Maine. I have this idea of doing an “Arthritis World Tour” where it just is, we’re on the road talking to interesting people who have arthritis and help people with arthritis.

So, sometimes I can see on the podcast like where people are listening from, actually I can get to my little calendar thing here — audience. Yeah, I can see that there’s people in this little map, you know, in Melbourne, Australia, in Perth, in Auckland, in Quezon City. Is that in Indonesia? Singapore, Frankfurt, you know, two downloads in Honolulu in the last month. So, I’m like, oh, I gotta go, you know. I can’t even pronounce some of these names of the cities. Copenhagen. Yeah. Oh, my gosh, sorry I’m getting distracted by this. Oh, Russia, Ulaanbaatar. Hello to whoever then Ulaanbaatar

Dr. Kimberly:  1:10:49

Oh, well if you ever need a valet, I’ll be, I think I’ll come with you. 

Cheryl:  1:10:53

Oh, that’ll be so fun. Well, thank you. This was super, super helpful. I really hope that people — I know that people listening will feel like they have a better handle on what the physical activity can do for them and, and how these integrative health guidelines can help them get like a good starting point. And hopefully they’ll choose PT, I know that was one of the campaigns. 

Dr. Kimberly:  1:11:13

Yes, choose PT. Choose PT first. And that’s the APTA slogan right now.

Cheryl:  1:11:18

Yeah, there’s a lot of other conditions that, you know, we don’t even talk about back pain or like ankylosing spondylitis and stuff. But there’s so much great evidence about you know, physical therapy as an intervention for back pain that can be potentially spare people having to get surgery and stuff like that.

So, if people are interested in following up with you, where can they find you online?

Dr. Kimberly:  1:11:40

They can find me on LinkedIn, Kimberly Steinberg, just under my name. @KSteinberger is my Twitter. Or look up Husson University, and just put my name in, and you could find me there.

Cheryl:  1:11:53

I love it. Well, that’s so, again, thank you for your service of running your clinic, I meant to say because I’ve never heard of any other clinic was specifically a pro-bono clinic for people with inflammatory arthritis. So, that’s pretty amazing. 

Dr. Kimberly:  1:12:05

Yes, yes, we see all kinds of patients but my specialty is —

Cheryl:  1:12:10

Oh, I see. Okay, sorry.

Dr. Kimberly:  1:12:11

I get referrals particularly for that because they know that I’m there.

Cheryl:  1:12:15

Yeah. Well, and unfortunately, there isn’t like a great directory that I’m aware of, of like physical therapists or occupational therapists that can help you that or that are like, particularly created for arthritis, but —

Dr. Kimberly:  1:12:29

The directory, the ACR directory.

Cheryl:  1:12:32

Oh, do they have —? Okay.

Dr. Kimberly:  1:12:33

Someone had asked me about it at the conference. And they — I wasn’t there for some reason, but now I am. 

Cheryl:  1:12:40

Oh, good. Okay. Well, maybe —

Dr. Kimberly:  1:12:42

Some professionals can go into that ACR directory for —

Cheryl:  1:12:46

So, they can help tell people — that’s actually good to know. Because I think a lot of people ask me, “How do I find, you know, I’m in Wichita, Kansas. How do I find a good —?” And I’m like, ask a rheumatologist who they hear good things about from their patients, like, there’s no great placement.

Dr. Kimberly:  1:13:02

What do they call it? Find a practitioner. It’s on the ACR website. There’s a, yeah, you can find — I know I’m on there. 

Cheryl:  1:13:11

Okay, I will put that on as well then. I will put that on the show notes. The show notes are always found on like the Arthritis Life website, which the longer URL is, arthritis.the enthusiasticlife.com. But I usually just say if you put in myarthritislife.net it’ll redirect you to the website, so. Yeah, I have paid, for people listening who maybe you’re newer, for every episode, there’s like a show notes page that has the full transcript of the episode, the video, and the audio, and like links to things that we’ve talked about today. It links to the 2022 ACR guidelines which are also on rheumatology.org. But thank you so much again.

Dr. Kimberly:  1:13:53

Thank you for having me. It was fun. 

Cheryl:  1:13:55

It was so fun. Okay, we’ll talk to you more later. Bye-bye for now.

Dr. Kimberly:  1:13:58

All right. You take care. Happy New Year.

Cheryl:  1:14:00

You, too. Bye.

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