Graded Exercise and Pacing in POTS with Dr. Catherine Lewan

E175: Graded Exercise and Pacing for POTS with Dr. Catherine Lewan [00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and today we are speaking to Dr. Catherine Lewan, licensed physical therapist, doctor of physical therapy, certified yoga therapist and yoga teacher, and patient herself who has had quite a journey with exercise triumphs and setbacks. So she is professionally and personally familiar with the finer points of physical therapy and exercise in POTS and related disorders. Today, she is speaking with us about the benefits, risks, clinical pearls, tips, tricks, and more. Dr. Lewan, thank you so much for speaking with us today. [00:00:42] Dr. Catherine Lewan: Oh, you're welcome. Happy to be here. [00:00:45] Jill Brook: So can you start by telling us a little bit more about yourself and your work? [00:00:50] Dr. Catherine Lewan: Sure. I became a physical therapist because on some level I knew I needed PT and I knew I needed to figure out some of the things that were going on in my body. From a young age, I was rewarded for being hypermobile, I excelled at dance and gymnastics, had a short professional dance career, and I noticed I was getting injured more often than My peers. I noticed that I would get dizzy very easily upon rising At some point in my early 20s, I was losing vision 10 or more times a day and because I was high functioning and my medical team thought I looked healthy, they told me that I just had low blood pressure and I was very healthy and go about my business. So it took a while to wrap up the dance career, I went into some fitness for a while there, got my doctorate in PT before I started putting pieces together and it really wasn't until my POTS diagnosis in end of 2016, maybe beginning of 2017, That my physician who made the final diagnosis at the table test said, yeah, you know, we might as well call your hypermobility Hypermobile EDS while we're at it. And I was like, I don't think that's how you make that diagnosis. He was right. I met all the clinical criteria. So I came about the POTS diagnosis really on my own. At that point I had worked with a lot of hypermobile patients, I had seen patients who had POTS, and I'll never forget my first POTS patient, I was thinking the whole time, like, like, okay, we didn't learn about POTS in school, so I better look this up, and as soon as I looked it up, learned more about it, I was like, This is me. This totally explains all that stuff that they wrote off as low blood pressure, but yeah, so I really came to the diagnosis myself, I did my own orthostatic vitals, my own poor man's tilt table test. In that journey, the further I got along with my own personal struggles and challenges, the more I started seeing these patients. I decided to be transparent about what I was dealing with and I thought I would get like a handful of, you know, a few EDS patients here and there, a few POTS patients every now and then, and I was Wrong. The people who told me that these things were rare were wrong. I was practicing clinically in Chicago at the time, and Chicago is a pretty big city. You'd think there'd be other people who really, you know, were specializing in this, but they really aren't a lot, and so my whole caseload Almost overnight, looking back, it feels like it was overnight, became EDS, hypermobile POTS, dysautonomia patients. And then as time went on, it became long COVID POTS patients and it became just kind of a niche practice for me. So as I was figuring out how to manage this for myself, I was also working with patients and helping them figure out how to manage it in their lives and their their situations. [00:04:10] Jill Brook: Wow, that's interesting that it snowballed so fast for you. Can I just ask? What percentage of your patients with POTS, dysautonomia, EDS type stuff had solid diagnoses versus were like you? Because it sounds like you went through years and years of PT, never knowing what your root issues were. Of [00:04:32] Dr. Catherine Lewan: Yeah, absolutely. And I'm not sure. Honestly, I'm not sure if I would have gotten there if I I didn't have the education and resources that I had to help myself get there. So I can totally see where patients can go decades without getting answers. And it's really unacceptable and we need to do better for these folks. I would say I found myself more often than I ever would've expected providing that information for patients and saying, Hey, you know what, here's what I'm seeing. Here's the clinical criteria for eDS or POTS. Hypermobility was a diagnosis that I could make because that's a musculoskeletal diagnosis. I could say, yes, you're hypermobile. If you have symptoms, you're on the hypermobility spectrum. But EDS and POTS, I always try to make it very clear that that is a medical diagnosis. You do need a medical doctor to rule out any other reasons why your heart rate is doing what it's doing or your connective tissue is a little different, right? But I would walk people through the diagnostic criteria for POTS. It was the orthostatic vitals, 10 minute stand test. And I was very surprised at how often I was the first person suggesting that we even do that. And I led a lot of people in that direction and, and then helped them find the medical team that they needed. It almost became like I was functioning as like a primary care PT [00:06:05] Jill Brook: Mm hmm. [00:06:06] Dr. Catherine Lewan: right? Like I'm going to help you find the right kind of pathway and then the team members that you need in order to manage this. Right, but yeah, I would say, gosh, anywhere from maybe 25 50 percent of my patients didn't have an official diagnosis. They found out about me because somebody said they might have some hypermobility or they might have some dysautonomia or they just heard that I deal with these kind of complex multi system things going on in people's bodies and find me that way. [00:06:41] Jill Brook: So this whole thing about the hypermobility spectrum is a little bit interesting to me because back when I was getting my diagnoses, it was not a spectrum. Either you had enough points on the Beighton scale or you did not. And at the time I was one point short and even though I was in my 40s and I could do splits in every direction and you know, a few other interesting things that you know, people would, I guess, call party tricks. I didn't technically qualify, so that was it and we never thought about it again. But it sounds like nowadays things like that would be a little more in the maybe category. Can you talk about what's the spectrum thing that now has replaced the EDS specific label. [00:07:23] Dr. Catherine Lewan: Yes, that's another great question. And I think it's overall a good shift, right? Because it's not black or white. It's not a yes or no thing. It is based still on the, the Beighton score primarily, and the Beighton score is not perfect. Right? If you happen to be more hypermobile in your elbows and your knees and your fingers, you're going to test positive on Beighton if your hypermobility exists in your shoulders and your hips and they sublux and dislocate all throughout your lifetime, those other joints aren't all that mobile, you'll show up as... Negative on a Beighton, which is, I think anybody who knows hypermobility well enough knows that, and knows that the Beighton is a limited tool. It's the only real validated tool that we have. We don't have better options that are validated for this, but that doesn't mean that if somebody doesn't mean that five out of nine on the Beighton that they're not hypermobile. It just means it's a limited tool. Right? So there's the movement in the direction of spectrum is, I think, recognizing that. And really, even if somebody, you know, doesn't meet the criteria on Beighton that should be asked, and you should have been asked, the five point criteria, which looks at historical hypermobility as well. So could you ever do the splits, right? If you're any older than 30 you're already stiffening up, right? So if you could have ever done the splits in your lifetime, if you could ever bend your pinky back by 90 degrees, if you could ever make your thumb touch your forearm, these would be things that indicate that your tissue is different. It's more pliable when you're younger. But we all stiffen up with age, and so the hypermobility pathway, the lifetime of a hypermobile person looks like subluxations, dislocations when they're younger, and more issues with mechanical laxity when you're younger. And then it seems to turn into more chronic pain, which is one of the things that irritates the autonomic nervous system, right? Autonomic nervous system is sensing injury after injury after injury and pain and pain that's not resolving, then it's going to be sounding the alarm again and again and again, and any system that we start to overuse can become dysfunctional. Right, so I think that's one pathway by which the autonomic nervous system can try its best to keep up with what's happening, but, [00:10:07] Jill Brook: so [00:10:07] Dr. Catherine Lewan: out of whack. [00:10:09] Jill Brook: yeah, so, so that's interesting because I think we don't hear about that pathway very often, but if I'm hearing you correctly, you're saying that just the chronic pain of the hypermobility problems or a lifetime of those can then contribute maybe to that maybe hypervigilant state or sympathetic overdrive that then contributes to the dysautonomia. And I think that the mast cell people would say it contributes to mast cell activation syndrome and oh my goodness, now we're in another vicious cycle. [00:10:42] Dr. Catherine Lewan: Mm hmm. Yeah, a hundred percent. So we do know this about the chronic pain community. There's very good evidence to show that the autonomic nervous system becomes maybe not like POTS criteria dysfunctional, but the autonomic system becomes dysfunctional if you're dealing with pain long enough. The inflammatory system, the immune system becomes dysfunctional if you're in pain long enough, right? These things all tie in together. So absolutely one can trigger the other and then they all get involved and it's going to feed into one another over time. But then that last stage of hypermobility, it gets really confusing. I'd say I'm in that last stage. I'm in my forties. But you get to a point where you're no longer as bendy. You're actually feeling kind of stiff, right? And you may present as stiff. So you look like you're not all that mobile. But that doesn't mean the problem wasn't there all along. It means nobody caught it sooner. And so I affectionately call it the aging hypermobile [00:11:49] Jill Brook: Mm-hmm. [00:11:49] Dr. Catherine Lewan: stage, right? And I put myself right in there is such that you're stiffening up, but you still have now at this point, the inflammatory issues, you have the autonomic issues, you have the chronic pain issues. And with that comes central sensitization and dysregulation of the central nervous system. Right? And the pain system itself. And so at that point, you may be a zero on Beighton you might be a one on Beighton. You may not have joints that are dislocating anymore, but that doesn't mean that wasn't the underlying issue all along, or one of the pieces of the puzzle. [00:12:27] Jill Brook: Yeah. No, I think that's so important. 'cause I know what goes through my head sometimes is, all right, I got 10 things I should really be dealing with and the joint pain is just pain. I'm gonna leave that one be, but it's not harmless is what I'm hearing. That there's reasons, even if you kind of can gut it out you shouldn't. But I think this brings us to the next thing that we were really excited to hear about from you which is how to think about exercise and the pros and cons and especially for people who have pain or how do you get all the benefits without all the risks and downsides? Can you just maybe free associate like how you think about patients like us? [00:13:08] Dr. Catherine Lewan: Absolutely, it's a challenge that I actually really like. I enjoy it. I've always enjoyed a good challenge but for me, it, it becomes an exercise in creativity. Because here you have someone who has pain with X, Y, Z movements, and maybe they have dizziness and autonomic issues with X, Y, Z movements, and then, you know, if you dare to tape them, you're going to flare up the MCAS, so like some of our traditional tools in PT are not going to work. And so I think a lot of clinicians go, ah, and they freeze up and they don't know what to do with that, right? And so they either are horribly conservative and don't really do much of anything at all, or they do the, okay, just tough it out. Just deal with it. Push through it, which isn't feasible. There are a certain number of things you can push through in life. If you're dealing with a significant amount of dysautonomia and inflammatory hypersensitivity in your body, you can't just keep pushing through that. It doesn't work. I know, I tried. [00:14:18] Jill Brook: I know, we're excited to talk about that. You have quite the story, and maybe I'll put that out as a, tease for people to hang in and hear about that. But yeah, you've been through it all with yourself and with others. So when you say it's an exercise in creativity, can you give us examples of what you're talking about? [00:14:36] Dr. Catherine Lewan: Sure. I mean, the Levine protocol is a good example of, all right, well, we know that exercise helps to condition the cardioautonomic system. We also know it helps with chronic pain and has an anti inflammatory effect when it is done in appropriate doses. And in ways that don't flare up all the stuff for that person. So, the Levine Protocol is kind of like a start and Dr. Levine, of course, found that, all right, if somebody's autonomic system is really revved up and overworked and dysfunctional in standing, let's start exercise lying down. I've had people lie down flat on the ground and get just those bike peddlers where they're just moving their feet. Lying totally flat, or I've even had some folks lie down on their belly and pedal with their arms, you know, for short periods of time to gradually condition themselves to be able to tolerate a little bit more exercise. And with the chronic pain And the autonomic stuff, and the inflammatory stuff, the, the way that I've come to think about it is you have to kind of sneak it in just under the radar. If you do too much, you're going to flare those systems up. You'll have way more pain, you'll have way more dysautonomia, you'll have way more inflammatory stuff that is going to stop you in your tracks. It's self limiting. That's what I mean when I say you can't just push through it. I mean, I would have. I was a professional dancer. I was on pointe shoes with my toes bleeding through my pointe shoes, and I would just keep going. The show must go on, right? But you can't do that with POTS. You just can't. And the same for chronic pain. If you just keep flaring things up, it's a downward spiral. Right? So you find those ways, like if I have somebody who can't tolerate being on their back, they can't tolerate being on their stomach, they can't, for some reason, the bike peddlers aren't working. All right. What exercise can we do in sideline? If sideline hurts their neck, what kind of pillow do we need to get? Do we get them a partial sideline? There's so many different ways to do it. And that's where, with my dance background, I actually have come to think of it as choreography. [00:16:46] Jill Brook: I love that. [00:16:47] Dr. Catherine Lewan: There's, okay, what moving parts are there? What could I play with? What could I tweak? What kind of choreography could I come up with that this person could do, right? So that they get the benefits of exercise and then you have to fly under the radar. And what I mean by that is you do just enough to get the conditioning effects, the benefits or show effects, but not so much that you're setting things off. And that can be a really delicate balance. And that's where I do believe you need someone who knows, really knows this to help guide you through it. I wish I had had that person when I was going through it , because even as a PT it was really challenging to find that amount that would be enough to get me the, the, the benefits of exercise, but not so much that it set things off. And it really is trial and error. It's trial and error and learning. Sometimes you learn that you did too much because you do flare things up. And that's not easy. But you learn from it and you adjust. And you just keep adjusting and tweaking it. And it's not a linear process by any means. There's going to be ups and downs along the way. And, and... You learn to go with the flow. If you don't and you just insist, well, I'm just going to stay on this path because I believe I should be able to do this much more today. It doesn't work and people end up quitting because they flare things up too much. And you do that enough times over and over again, and it just becomes self defeating and so you have to learn how to adjust along the way and adapt and listen to your body and listen to your body's signals. So, I don't believe, and it would be interesting if we could get Dr. Levine on this call to see what his intentions were. When you do research, and right now I am focusing on research. We just moved to, to Charleston and at the, the Medical University of South Carolina, where we're doing some interesting research in this area, and when you do research, you do have to keep everything the same and have everyone do the same kind of a program in order to show The efficacy of that program. But in real life application, in clinical application, you don't make somebody do the Levine protocol exactly how it is. That's not appropriate for everyone. So I always would walk people through, here are the concepts that we're going to use. We're going to start you out with more recumbent. We're going to find positions your body can tolerate. We're going to find the amount your body can tolerate. And for some patients, I would start out with 20 seconds of exercise and then rest and do some deep breaths, regulate the autonomic system a bit, and then Go back for another 20 seconds and I would have people who would start there thinking, oh my gosh, this is going to be so slow and so tedious. And yeah, it's hard work and it's tedious, but after a number of months, they're doing 20 minutes. And a few more months and they're doing 40 minutes and my experience has been by the time you're starting to tolerate 30 to 60 minutes at a time in the Levine protocol, especially when you get to the more upright 30 to 60 minutes, then you really start to notice the real life benefit. Then you're noticing you're not winded walking to the grocery store anymore, right? And, and that's where it gets really fun [00:20:17] Jill Brook: Mm hmm. [00:20:18] Dr. Catherine Lewan: because you start to see and feel the reward of your efforts. But I always try to prepare people for it's not going to happen right away. It's almost like when you go on a diet and you're, you're trying to lose weight and you change your diet and you're working so hard and it's so painful and you're so hungry. But you don't start losing weight right away. It might be weeks, right? And you sort of have to go through that discomfort for a bit and I'm not advocating for anything extreme. Do these things in healthy, safe ways that are right for you, but there is going to be that period of, I'm uncomfortable, this doesn't feel great, I'm not sure if I'm on the right track because I'm not seeing results yet, and that's where having some guidance, having a trained professional who has experience with this can be so helpful because they can tell you, yep, it's okay, stick with it, you're on the right track. [00:21:11] Jill Brook: Well, that's all my question, because it does sound like there's so many different factors here, and there's a certain amount of discomfort that is expected, but then there's a certain different amount that's bad. And so I guess I have two questions. First is, what are you looking for in a patient who's going through this process, especially if they're at the very beginning and they have a lot of different issues to work around. And then my second question is, is this something that any physical therapist would be trained to do or do you really need somebody who knows POTS and EDS and MCAS and dysautonomia. [00:21:45] Dr. Catherine Lewan: I would not have known how to, how to do this out of PT school, even having a doctorate level entry level in our profession, we didn't cover POTS, maybe it's changing but I think even if I had known initially what the Levine protocol was as a new therapist, you tend to just follow the protocol because that's what it says. It's only a seasoned professional who's going to go, all right, I see the concepts here that I need to apply creatively to meet the needs of this individual in front of me, right? And then there's also structure, and our healthcare system often does not give us structure that it allows therapists to spend, say, an hour each session with their patients, listening to them and listening for those cues of, okay, their body is handling this okay, we can push a little bit more, or that's really not and we need to back off, we need to slow down, right? So the things that I would be looking for by way of practically speaking, when do we sit with that discomfort and hang with it and keep going and when do we back off. And I always walk my patients through this because I want them to understand it and I want them to start to assess for themselves so that they can be more independent and eventually not need me, but The system is giving you signals that this is very uncomfortable, painful increasing symptoms rapidly. Oh, of course, we've got to back off. And I use like a red light, yellow light, green light kind of scenario. That's a red light. Pretty obvious, but that's not something to push through. If you have symptoms that maybe aren't too bad, but after doing a new workout or pushing yourself a little bit they last a week or a month, it takes you that long to recover. That's also red light. Yeah. Yellow light, proceed with caution would be more like, all right, yeah, I felt uncomfortable during this exercise that I intended to push myself a bit with, Uncomfortable during, maybe a little sore afterwards, or a little bit of symptom increase afterwards, whether that's an increase in nausea or some other symptom. Little bit of increase in symptoms, but doesn't last more than a couple of days. Yellow light. Okay, we could, we can kind of work with that and just be cautious. And then green light would be what we would expect to see from exercise, which for somebody whose system isn't responding to exercise as appropriate, it's hard to know what that is. But, if you are appropriately uncomfortable during the exercise, right? So if you're running a marathon, it's gonna be painful, right? If you're appropriately uncomfortable during it's an expected amount of discomfort. It matches what you're doing, right? If you're just walking and you're in marathon level discomfort, that's not appropriate. That's not a match. I call that a mismatch. But if it's a match and the discomfort that you're dealing with is right on par with what it is that you're asking your body to do, that's green light. And then I would be looking for any increase in. Discomfort doesn't really last more than a day, two, three tops. Right? If you think of like sometime when you challenged your muscles and your muscles were sore afterwards, you'd expect a little bit of soreness, two, three days. Shouldn't be at the point where like you cannot get out of a chair where you can't function in your everyday life and that's the other thing that I look for is if what we're doing if the ways that we're challenging your body are Taking away from your ability to function in real life. That's also a yellow light red light [00:25:38] Jill Brook: Yeah, you know what's interesting? As you talk about all this stuff, I'm thinking about, I don't know if I'm unusual, but I have all of these different factors that can determine whether my exercise is good for me or bad for me, besides just the exercise, and so I'm talking like time of day, and I don't know if that's a mast cell thing or not, but I swear I could do the same exercise at 7 a. m. or 7 p. m. and at one time it'll feel good and the other one it'll cause inflammation. Another one is temperature. I'm weird because I have moved to Alaska to stay cold. I do not do well with heat but the exact same exercise can be great if I'm cool enough and it can be horrible if I'm too warm it'll just like turn into inflammation like nothing. Another weird one for me is that I cannot do anything that's too repetitive even like walking on pavement. I do well if I'm walking like on a very rocky trail, but something about the repetition. And so like, there's all these things that I would not have known about 20, 30 years ago when I was starting to deal with this. And now I figured out all these teensy tiny little nuances that let me do so much more than I used to be able to do. But you never hear anybody talk about them. And so you probably do, but I guess I would just put that out there for patients. Hey, if your workout's not working for you at, you know, one time a day, can you just try a different time of day and see if it changes things? [00:27:02] Dr. Catherine Lewan: Those nuances are gold. I think what we get into is a little bit of like a head game that we play with ourselves and we sort of shut down on it and we go, well, but that shouldn't be happening. The same workout at 7 a. m. versus 1 p. m. should feel the same, right? That's what our mind tells us. And then when our experience doesn't match that, We get frustrated and either force ourselves to do it anyway, you know, and deal with the consequences, or I'm just going to give up. And there is a middle ground. The middle ground is doing it, playing with it, getting creative, seeing what happens, getting curious. What is the pattern here? Is it the same? You found that the pattern was consistent for you. Certain times a day are better, other times a day aren't. All right. Certain temperatures are better, others aren't. Okay. And a little, little bit of acceptance thrown in there. Just sort of like, all right, this is what my body is. This is doing right now. This is what it's responding favorably to, and this is what it isn't. And working with that, like taking all of those messages from your body as little nuggets of gold, little bits of information that really are just your body trying its best in its primitive way of communicating with you, trying to get you on track, like here's what would work best right now, right? And it can be frustrating when it's a moving target and it's not always consistent, and it's really frustrating when it doesn't match up with what our rational brain is telling us it should be. [00:28:44] Jill Brook: Hmm. [00:28:45] Dr. Catherine Lewan: And there have been times with patients where I can say, Oh, well, actually those different times of day are different fluctuations in your inflammatory levels. And that's okay. And we can work with that. There are other times that even with everything that I know, and I've learned over the years, I can't figure it out. And I, I just have to go, look, I'm not sure why your body is doing this, but it's doing it and it's sending us a strong message. We've just got to listen and work with that. We might not ever know. And that's something I think we prioritize that in our culture is that we want to know. We want answers and we feel like we need to have answers in order to move forward. Nope. Sometimes we can just go, all right, I might not fully understand this. But I'm going to work with it in order to get the benefits of, in this case, it might be exercise and progressing an exercise program so that I can start to feel better. But if we hang ourselves up on, I don't understand this, so I don't like it, I don't want it, I'm going to resist it, then we don't ever get there. [00:29:53] Jill Brook: Mm hmm. Yeah. Can you talk about the extra challenges that you've had with people with long COVID? Because I know that you're always so positive and I know you've talked about how you don't like to Talk about failures. You have, you know, other words for that. And I guess they have so many completely novel challenges that you probably are on the very forefront of understanding what's going on with those POTS patients. [00:30:22] Dr. Catherine Lewan: So I think that's a great example of, we may not fully understand. It may not make sense yet, and I mean that in a broader sense of, we, scientists, don't understand it yet. Medical professionals might not fully understand it yet. It might be decades Before we get a little further in our understanding. But that doesn't mean that we have to just freeze up and go, Oh, well, nothing can be done. We understand enough of the concepts of how to pace, how to gradually progress exercise, In a way that is symptom-based to work with this person's system and what it's telling us. We know enough that we can move forward and not just freeze up and go, I'm gonna wait. I'm gonna wait the decades to see when they finally come up with a solution for this. I mean, we know we don't have that option because we have patients with ME myalgic encephalomyelitis, we've got patients with chronic fatigue syndrome. We've got patients with POTS who for decades haven't had answers. We don't have a cure for those things yet. It's been decades... [00:31:35] Jill Brook: seem like exercise is helping the long COVID patients. And I guess, what about the ones who also have ME? What are you finding? [00:31:41] Dr. Catherine Lewan: There's a huge amount of overlap, and ME is a little bit of tricky diagnosis, kind of like hypermobility, like you mentioned, like, do you meet the criteria? Do you not? Is the criteria going to change over time? Right? So there's tons of overlap. We know that There's a lot of features that are gonna carry over from one diagnosis to the next. We know the autonomic nerve system isn't happy, isn't functioning optimally. We know the immune system isn't functioning optimally. And so I think what we see with ME, with long COVID patients, is that sometimes that graded exercise is done on what's called a quota base, where you just, you did 20 minutes last week, you're going to do 30 minutes this week, and that's just what the protocol says. That does not work. May be once in a while, you might hit hit It gold with that with the right person, but overall, it does not work. And I think that's why we see studies where patients with ME, you know, believe that exercise is harmful for them. If someone didn't adjust it for them, if, if someone didn't help them listen to their body signals and make those adjustments along the way, it is harmful. It can be harmful. There have been studies where they looked at people who were successful, and I'm saying that with air quotes, at an exercise, graded exercise program with ME, and they found that the people who were successful, able to progress the exercise, really were just not doing as much in their everyday life, so they only had so much energy to give. If they were giving it to this graded exercise program, then they weren't cooking dinner, they weren't finishing the laundry. Right? So again, it's not, it's not success, but if you try that you fail, I use air quotes with that. I don't like to use the term fail because we don't have to let that be a failure. If that graded exercise program didn't work. Okay. How do we use this as useful information? So that we know we've got a better sense of what your body is and isn't tolerating and how we need to be creative to adapt it, to make it work for you. Right? So, again, if doing the exercise program is making it so that you can't cook dinner for your family and you can't finish the laundry and you can't even get yourself to take a shower because you're so exhausted, right, then that's useful information we need to adapt. We need to back off. We need to find a way to do it differently so that you can tolerate it. And sometimes with the ME folks, with the long COVID folks, that can be a very slow process and involve a lot of pacing. I mentioned before that I've had patients that I start with just 20 seconds of exercise at a time, and it might even be low level exercise. And we might need to split that up into an AM session, 20 seconds in the morning, and maybe an afternoon session. And if they're feeling up to it, maybe another 20 seconds in the evening before bed, if at that point they're feeling like, all right, I can handle another 20 seconds. If not, okay, then don't. Then do what I call active rest or active recovery exercise instead. Okay. That might be laying down to do some deep breathing. It might be, might even just be reading a good book that you enjoy because that's also regulating for the autonomic system and writing in a gratitude journal helps lower inflammation. So maybe it's that kind of exercise that needs to be done. We might have to get really creative and put that exercise I like to call it sandwiched in between some of these active rest or active recovery type exercises. So maybe, you know, start out with your deep breathing to calm and soothe the system. Do the little bit of exercise, whatever is appropriate, whatever you can tolerate, and then sandwich it with another active recovery exercise to again calm and soothe the system. Let your system know this is okay. Because if everything's kind of on high alert, if all the alarms are going off, if your body is trying to alert you, something's wrong, something's wrong, if you start doing exercise, it's going to tell you, oh, this is not good. Even if exercise is healthy for you long term And the other thing that tends to throw us off when our systems are on high alert is just change. Any change might be registered as, oh, let's sound the alarm even louder, right? So we have to, again, find ways to kind of fly under the radar. And signal to your system, yes, there's a change that's happening, yeah, there might be a little bit more activity, but it's okay, it's safe, and we don't have to sound all of those symptom alarms that are trying to get your attention and get you to take notes, and if you don't know how to listen to those alarms, you might just hear, alright, I've got to stop, right? Or, [00:36:50] Jill Brook: who is so debilitated that they can only do maybe 20 seconds. [00:36:55] Dr. Catherine Lewan: Yeah, [00:36:56] Jill Brook: What have you seen? I guess, do you have some hope to offer those people? How far have you seen those people get? Can they work up to five minutes? Can they work up to 30? what's in the range of possibilities when you're starting there? [00:37:11] Dr. Catherine Lewan: I did have a POTS patient who started with 20 seconds at a time and we did have to space it out throughout the day and she did get up to a point where she was doing 40 minutes of biking five days a week. Yeah, yeah. And so there's hope there. But, life is always going to throw some challenges your way. There will be ups and downs. And unfortunately, she did get COVID and that was a huge setback. And usually when you've conditioned the system to do more, and you have a setback, it doesn't take you back to zero. Right? But it really did set her back, and it was a big bummer to have to start back again with just these small, small amounts of exercise. But at that point, you have the experience, hopefully, of seeing, hey, this can work. I know if I put the work effort in, and I listen to my body along the way, that I can see progress. So it usually is... easier the second time around, the third time around. i shared with you that i recently had a csf week situation [00:38:25] Jill Brook: Can we talk [00:38:26] Dr. Catherine Lewan: yeah yeah yeah sure yeah [00:38:28] Jill Brook: have sort of seen the depths of despair and the peaks of glory. [00:38:34] Dr. Catherine Lewan: yeah [00:38:34] Jill Brook: Should we end with maybe your story and maybe what your strategies are, what it taught you and [00:38:41] Dr. Catherine Lewan: Yeah, that's, that was a cliffhanger, right? We're gonna end with that. Yeah, so at the time that I figured out I had POTS and found myself somebody to confirm the diagnosis, I was short of breath just being upright and walking slowly and that was alarming to me because I have been an exerciser my entire life made no sense. Right, so I knew something was really up and my system was trying to get my attention and that I needed to listen and that I needed to be humble and ask for help. So I did find a team that I could work with and I did go on a beta blocker for a bit there to dampen the heart rate. That did help me start exercising. I started at the beginning of the Levine protocol, and I did rowing or biking, I didn't have access to a pool at that time, but that, that can be really great too for folks. And it was humbling. For somebody who had a professional dance career, I ran a marathon in my 20s and like I've always been active, it was humbling and it was really uncomfortable. But like I said, I did get to the point, it took me about a year to get to the point where I was tolerating I did upright exercise for an hour at a time, and five days a week, and for me that was the point where I really noticed a difference in my everyday life. I wasn't short of breath, just walking anymore. Some of the symptoms were calming down, I really wanted to see how far I could take that. Where could I go with this? if I keep applying these principles of graded exercise and listening to my body along the way, how far could I go? And I also know that, that vigorous exercise does have significant physiological benefits. You know, you can rev up your own endogenous opioid pathways and get better at creating those endogenous endorphins, opioids, cannabinoids. These are all natural painkillers that your brain can create and it can get better at creating. Again, took years to get there now, but last year I ran a half marathon. And I was at a point where if I felt a migraine or pain episode coming on, I could go for a run and calm it down. [00:41:03] Jill Brook: Oh wow. [00:41:04] Dr. Catherine Lewan: Yeah, that was pretty amazing, right? And it actually worked better than some of the meds that I had been given. And in this process, I had gotten off of the beta blockers and I'd been able to wean off some of my meds, not nearly as fatigued as I used to be. Things were, I'm not going to say symptom free, but manageable. I got to a point where I was manageable and with training that much for the half marathon, I actually felt better. But by that point, I knew how to train skillfully. I knew how to train in a way where I was really doing a better job of listening to my body's signals. And adapting. So I didn't train on, you know, there are all sorts of running programs where you just, you do five miles this day and then you do seven miles on this day. I didn't do that. It was like a day by day. All right. Do I feel like I can do a long run today? And if not, okay, well, what can I handle? And do I need a break from running? Is my body giving me that signal? So I've gotten to a point where I could really sort of listen to those signals and adapt. And then I moved to Charleston and moving is stressful on one's body to begin with, but I had just finished unpacking my boxes and settling in and was looking forward to exploring this new city that I live in when I developed an acute CSF like cerebrospinal fluid, leak so the fluid around my brain and spinal cord was leaking out of my central nervous system, which is very irritating to one's nervous system. [00:42:31] Jill Brook: just to make sure people understand. So do you mean that you started to have CSF cerebrospinal fluid, like coming out your nose? Is that what happens? [00:42:41] Dr. Catherine Lewan: yeah. Yeah, great question. That's if you have a cranial leak. If a leak is coming from your brain, it can leak out through your nose or your ears. That was not the type that I had. Mine is a leak that's coming from my spine, and in that case, if you're upright, Gravity is not my friend. My body does not like upright in a number of ways, but with this particular presentation, when I'm upright, the CSF is draining from my brain down my spinal cord and out this leak through the spinal canal, right? And so the conservative management is lie down all the time. [00:43:22] Jill Brook: All [00:43:23] Dr. Catherine Lewan: down. Yep. Yep. I mean, I couldn't be up for more than a few minutes without severe headaches, severe nausea, arms and legs were going numb. And then a classic sign of a leak is that as soon as you lie down, all of those things start to get better within minutes. It's really a very orthostatic pattern. Whereas if you have a POTS headache, it's usually Maybe by the end of the day, after you've been up for many hours in the day, you have that sort of orthostatic headache. This was like immediate and I had just moved here, so I didn't have a medical team yet. And so it took a while to find healthcare providers who could even help me get through this. And they initially didn't know what to do with me. We're still kind of trying to figure it out. I still have a little bit of like a slow leak happening, but yeah, initially they just said, well, until we figure this out more, until we get some imaging, until we come up with a treatment plan, just lie down. That's going to be your symptom management strategy. And I was like, all right, well, I can do that for a week. I can do that for two weeks. When they started saying that at week three, four, five, six, [00:44:30] Jill Brook: Ooph. Oh, no. [00:44:31] Dr. Catherine Lewan: I was going, you don't understand, I also have POTS, and the more you have me lie down, the more deconditioned I get, and exercise has been my primary pain management strategy, it has been my primary dysautonomia management strategy. And I'm going, you are really setting me back here, people. And of course, you know, our healthcare system is so segmented that they're like, well, we're just in charge of your CSF leak so we just want you to lay down. And I'm going, no, my autonomic nervous system isn't going to like that. And my sensitized pain system is not going to like that. And so it was just really tough. And I did get to a point where I found the right team members and just recently in the last month and a half, like you said number of weeks found a neurosurgeon who confirmed for me that I didn't need to keep lying down. That was my hunch. That was my hunch. I was like, okay, I know that there is a benefit to lying down for a couple weeks initially to see if that helps the leak heal, but chronically, weeks and weeks on end? The benefit isn't there anymore. The harm of lying down that much is greater than the benefit of lying down, right, because you do feel better, much like POTS, you do feel better lying down, which is so deceiving, it's so natural and human to then go, all right, well, then I'm just going to lie down. And especially when your medical team is saying, just lie down, right? They're not giving you any other better options. So I knew it was going to be a setback, but when I got that clearance to, yeah, no, go ahead and move, you know, you're going to deal with symptoms along the way, but I know how to deal with symptoms. I know how to listen to my body because I have This great experience that I had with POTS and with chronic pain. And I've learned how to listen to my body better along the way. And so that was very useful for this because then when I started adding exercise back in, I could listen to what my body was telling me and I'm back to the point where I'm up to running five or six miles at a time. [00:46:39] Jill Brook: okay. [00:46:40] Dr. Catherine Lewan: And I think I'm going to sign up for another half marathon this winter. I don't know if I'll finish it, but I think it's helpful for me to have a goal and At least try, right? for me, it's in the journey. It's not about like beating my time from last year because after this major setback that I've had, I don't think that's realistic, but maybe I end up walking half of it and that's fine. that's just fine. At least I'm upright. [00:47:06] Jill Brook: Enjoying what you can do, changing your goals and [00:47:09] Dr. Catherine Lewan: Yeah. Adapting along the way. [00:47:11] Jill Brook: Yeah. Wow. Well, Dr. Lewan, thank you so much for sharing all of this information with us. And I know that everybody listening is wishing you personally all the best. And I think sometimes it is a little bit reassuring to us when even the absolute pros, you know, don't have some magic ticket out of this conundrum. [00:47:36] Dr. Catherine Lewan: Oh, I wish. I wish. If I had that, I would use it on myself and I would share it with everybody. But no, it is Like I said, trial and error and a lot of persistence and a lot of no I guess pun intended flexibility along the way if you're hypermobile, you know, that, that you have to learn how to be cognitively flexible and adjust the expectations and be creative and come up with a different way to get it done if one way isn't working. So, yeah, there's a lot of growth that can happen from it, but it's not an easy path, so I wish everybody who's going through that all the best on their journey, and I do hope that you can find some people on your team who can help you, because nobody should have to go through it alone, and nobody should have to go through it in the dark, or with team members who are in the dark. So part of my professional mission is to not just work with people one on one to help them with their exercise programming and strategizing, but also to train healthcare professionals and teach continuing education courses that catch them up to speed on what is POTS, And how to manage it, how to help people manage it, how to help people listen to their body's signals and make those adjustments so that they can get the benefits of exercise and not just be feeling the discomfort of it. [00:49:00] Jill Brook: Oh, that's fantastic. Thank you for helping to educate more people in your profession. Is there any place people can find you online if they want to follow your work or see the research that you're going to be doing here? Anything like that? [00:49:15] Dr. Catherine Lewan: Yeah. Yeah. I do have a website. It's just my name, catherinelewan com. And as our research evolves, I'll update what it is that we're doing right now. It's a little bit of a secret and I haven't been cleared to talk about it much, but yeah, I'll do some reveal as to what it is that we're working on. And I am really excited about it because we are targeting the autonomic nervous system and seeing what we can do with that strategy. [00:49:39] Jill Brook: Fantastic. Well, Dr. Lewan thank you so much for all this fabulous information. Thank you so much for all of your kindness, your wisdom, your experience, and showing us what a good attitude looks like going through all of this stuff. We have much gratitude for everything you've shared today. Thanks so much. [00:49:58] Dr. Catherine Lewan: Thanks so much for having me. [00:50:00] Jill Brook: Okay, listeners, that's all for now. We'll be back with more next week, but in the meantime, thank you for listening. Remember you're not alone and please join us again soon.