Empowering Patients with POTS: Practical Advice from Emily Rich

[00:01:34] Mark Kargela: Hello friends. And welcome back to another episode of the modern pain podcast. This week, we had another clinician who brings a unique perspective. Emily Rich is someone who has dealt with pots and now is helping others live well with pots and related conditions. For those of you don't know, pot stands for postural orthostatic tachycardia syndrome. She recently finished her PhD and now is onto other projects. To help us all better understand and manage these conditions.

Emily spoke to her personal journey with pots and how her personal experience, led her to specializing in this population.

[00:02:02] Emily Rich: on my third day, I had, we had a POTS patient and it really just spiraled from there in terms of like, Oh, there's a lot we should and could be doing as. Um, rehab therapists that, um, I had never really put it together. I didn't learn about it in school, um, and I never had therapy myself and, uh, for these conditions.

[00:02:25] Mark Kargela: Too many people, especially women have their symptoms brushed off as anxiety, or that it's all in their head. I asked Emily if she had experienced any of that herself.

[00:02:33] Emily Rich: I wish I [00:02:34] could say no, but, um, the vast majority of people, especially women with POTS, um, have been told it's all in your head at some point in time. There was actually a study they did and the number is over 50%

[00:02:47] Mark Kargela: We spoke to the key characteristic of humility that is so important to have when working with people, dealing with these complex conditions.

[00:02:54] Emily Rich: I teach clinicians that all the time and students that like the best thing you can do is just to admit that you don't have all the answers. Even when you feel like you might oftentimes it helps to empower the patient and to say, like, I'm excited to learn from you too. Um, even someone who had a lived experience with this, when I first started seeing these patients, I felt a lot of that imposter syndrome.

[00:03:17] Mark Kargela: She shares some simple tips you can use in your clinic to help identify pots in your population.

[00:03:22] Emily Rich: physical therapists, especially, although any type of allied health professional is likely, um, someone who sees the patient before they've been diagnosed. That happens so often. And so we're in a prime [00:03:34] position as therapists to, um, identify those things and not to diagnose, but to send off and, um, help patients to find the right people.

[00:03:42] Mark Kargela: We discussed the interrelationship of pots with other conditions such as Ehlers Danlos syndrome and mast cell syndrome and how you can recognize this in your practice and help people get the resources they need.

[00:03:51] Emily Rich: This isn't something new that popped up and you're just going to be like waiting for the next shoe to drop. It's something that has always been going on with you. Um, or maybe you had some sort of illness like COVID or something that caused those symptoms to turn on. Um, but it's not like you're going to just be waiting to have another diagnosis every day for the rest of your life.

And so it can be so helpful for patients to connect to these things.

[00:04:15] Mark Kargela: Emily brought a wealth of knowledge. And this episode is packed with actionable tips. You can immediately start applying to your own practice. Make sure you check out the show notes for links to a ton of great resources.

If you could do me one favor today, please share this episode with anyone, you know, who may be working with people, dealing with these conditions, or maybe they're dealing with these conditions themselves.

Now onto the episode.

[00:04:33] Announcer: [00:04:34] This is the Modern Pain Podcast with Mark Kargela.

[00:04:39] Mark Kargela: Welcome to the podcast, Emily.

[00:04:41] Emily Rich: Thank you so much for having me.

[00:04:43] Mark Kargela: This is kind of coming full circle. We spoke to this before we just hit recording here. I remember I first met Emily when she was a student occupational therapist at the Mayo Clinic over in Phoenix. Uh, we, we calculated about seven years ago and she's done some amazing things in seven years.

Makes me feel like a complete slacker of a, of a clinician as far as when you hear some of the great things she's doing and we'll talk to it. So we're going to talk a little bit about that today, but for those of the audience who may not know about you, can you introduce yourself and kind of where you're at and what you're up to?

[00:05:10] Emily Rich: Absolutely. So I, Emily Rich, an occupational therapist. Um, I live in Tucson, Arizona, where I practice part time in the clinic, seeing patients with POTS and EDS and mass cell diseases, things that we'll talk about today. And I also just finished my PhD in occupational therapy, um, where I studied rehab in POTS, um, [00:05:34] specifically.

And yeah, I think that's, that's pretty much it. That's me. I have a one year old and between school and work and family life, that's pretty much all there is to me right now.

[00:05:45] Mark Kargela: I mean, to fit that in and of itself as a, as an amazing feat. So kudos to you for getting through it and coming out the other side with the one year old, again, it makes me feel like a complete lazy person, but.

With that said, you have a unique perspective with our topic. We're going to talk about POTS and postural orthostatic tachycardia syndrome. Um, that you've dealt with it. You've, you're a lived experience. And I think, again, we had, uh, Daria Oller recently with, um, long COVID and shared her unique perspective as being someone who's dealt with it and now being a clinician who's kind of helping other people and clinicians kind of navigate it themselves.

Can you speak to a little bit about your journey with POTS and kind of how it came to be? Cause I think probably when you were being diagnosed, I don't know how prevalent it was as far as being a more of a mainstream understood diagnosis, but I'm curious [00:06:34] if you could kind of share your background with it.

[00:06:36] Emily Rich: So I started having symptoms of POTS and EDS and other related conditions when I was 14, which is very common that women, um, of the, around the puberty age, um, start to have symptoms. And subsequently I had a concussion, which just further caused those symptoms to, to start to show up.

So it was really a perfect storm. Um, I wasn't diagnosed with anything for six years. So it was a long journey. Um, I eventually got to Mayo and actually was, you know, figured out a lot of things that were going on up there. And then, Went to occupational therapy school to become a pediatric OT, had no plans on seeing people with chronic illness or adults of any kind.

And, um, yeah, had one of my field work rotations at Mayo. And on my third day, I had, we had a POTS patient and it really just spiraled from there in terms of [00:07:34] like, Oh, there's a lot we should and could be doing as. Um, rehab therapists that, um, I had never really put it together. I didn't learn about it in school, um, and I never had therapy myself and, uh, for these conditions.

So, um, that's sort of what happened. I used my lived experience coupled with my training as an occupational therapist. And then just, I've learned so much from my patients as I think everyone listening, hopefully, we're all people who learn so much from our patients. And, um, Those together have just kind of been really a journey and decided I needed to do research and grow this even more.

And that's what spurred me to do the PhD. But, um, yeah, it's been a long journey since we met originally.

[00:08:19] Mark Kargela: An amazing journey. And I think you can obviously, you just hear the passion for the topic in your voice and how you speak to it. I'm wondering in your journey, because often with some of these conditions, especially when they're maybe not as mainstream, obviously Mayo's the place to go with some of these more or less recognized, I guess, at [00:08:34] the time diagnoses, uh, I'm wondering if you can share, cause the patient experience obviously being a huge part of what we speak on the podcast and often, sometimes not the best experience when you encounter healthcare and not, not well meaning people that we encounter on the way, but sometimes people that just don't have any.

maybe knowledge or understanding of POTS. And sometimes I know sometimes things get brushed off. I was, I've shared with my wife's challenges when she had some, you know, events health wise, where it just got pushed to anxiety and different things. Did you experience any of that challenging kind of interaction and maybe invalidation when you were dealing with some of your journey?

[00:09:08] Emily Rich: I wish I could say no, but, um, the vast majority of people, especially women with POTS, um, have been told it's all in your head at some point in time. There was actually a study they did and the number is over 50%. Um, and so, unfortunately, the symptoms, you know, look often like anxiety. And, um, It's not necessarily as objective on testing blood work isn't going to show [00:09:34] anything and echocardiograms not going to show anything positive for pots.

And so a lot of folks feel like, I don't know, it must just be mental health. You know, I don't have the answers for this. And one of my, um, actually my own personal physician, but also now a colleague, um, at Mayo or was at Mayo was a neurologist there. I love that he says we're just not smart enough yet to understand this.

And he says that about a lot of things, you know, just that humility is needed. I think to recognize that. It's not necessarily that it's all in your head. It's definitely not all in your head, but yeah, we might just not be smart enough to understand what exactly is going on.

[00:10:13] Mark Kargela: To me, that's a sign of a great clinician is that humility.

And we don't know, and we're not smart enough, I think is the humility. I think we should all carry it. And I don't think again, some of the responses and that lack of humility is out of, you know, bad intentions, but I think it's sometimes out of this, Fear of not knowing and not appearing to be the expert or the, the person that these people and you want to [00:10:34] help and then all of a sudden you're, you're feeling this imposter syndrome and you know, kind of self consciousness that, that arises when you're, don't really know.

I think one of my biggest step forward, especially working with a lot of people with complex pain situations is being able to have that honest conversation. And I haven't met anybody yet when I've said, you know, we don't know, and I'm not a hundred percent sure, but here's the things we do know and we have found.

through research and working with folks like yourself that we can help. What, has that been your experience too with, with kind of the whole pots and some of the things we still don't understand with some of this, as you mentioned, interrelationships with Ehlers Danlos, and we'll speak to mast cell syndrome and different things, but what's been your experience with that kind of attitude and humility from clinicians?

[00:11:16] Emily Rich: I think I teach clinicians that all the time and students that like the best thing you can do is just to admit that you don't have all the answers. Um, even when you feel like you might, um, oftentimes it helps to empower the patient and to say, like, I'm excited to learn from you too. Um, [00:11:34] even someone who had a lived experience with this, when I first started seeing these patients, I felt a lot of that imposter syndrome.

It felt like, am I just telling them things that I did for myself? Is that? Is that skilled practice? Like, I don't, I don't really know if this is, um, right. The reality is there's nobody else helping them. And so it felt like, well, at least I'm doing something, but I had a lot of moments. And this was as a brand new therapist where it's really hard, but I would just say like, I don't know, um, I'm going to get back to you, you know, and even still, I might still not know, but we're going to work on this together.

And patients, you know, Yes, they love to see an expert, they love, which I don't consider myself, but they love to see someone who's very knowledgeable. And even with that, recognizing that we don't have all the answers. And so it's okay to just be a presence for them to say, I'm here with you, we're going to figure this out together.

Um, and you're not alone in this anymore. [00:12:34] Um, whereas they usually have been alone for often years and years.

[00:12:38] Mark Kargela: I think you, you spoke to a little bit of your journey and, and definitely speaking to people with some of the lived experience thing, it is kind of a. isolating event, especially when it's one of these conditions, you know, complex pain, obviously not always well understood.

And as you know, students sometimes struggle and clinicians, even veteran clinicians struggle when it doesn't fit the nice, clear black and white definitions that we read in our textbooks and our, maybe our research studies. So yeah, you know, kudos to, to you for instilling that in your students. I'm wondering, we get a lot of clinicians who are, you know, watching and listening, uh, to the podcast, and some of them seeing patients on more of a direct access, right, where they might be the first contact for some people seeking care.

What are some things you would say, like, with POTS especially, that might be some clues that you might need to look into That diagnosis, like, what may clinicians see in clinic that should raise some suspicions that at minimum they should be thinking of this as a differential and then possible referral [00:13:34] for further diagnostics?

[00:13:36] Emily Rich: It's, um, physical therapists, especially, although any type of allied health professional is likely, um, someone who sees the patient before they've been diagnosed. That happens so often. And so we're in a prime position as therapists to, um, identify those things and not to diagnose, but to send off and, um, help patients to find the right people.

So, um, Yeah, absolutely. What are some things I'd be looking for? Well, first of all, I mentioned I had a concussion before getting this diagnosis. Concussion is. now being more recognized, but previously has been really under recognized as a antecedent, like, uh, an event that happens before someone, um, starts to have symptoms of POTS.

So if you are seeing, um, uh, someone post concussion, this should be on your radar. pretty much with every patient just to be screening for and listening for signs. Also, if someone has had a viral illness, some kind of infection, a [00:14:34] surgery, those are often events that precede the onset of symptoms. And then anyone that has signs of hypermobility, Ehlers Danlos Syndrome, which likely, you know, may not have been diagnosed, Um, signs of a lot of allergy like things they're flushing if their cheeks are turning red or their neck is turning red, um, itchy skin, a lot of gastrointestinal issues, um, And those are some of the more kind of strange things that make me think POTS.

Um, specifically though, if you are looking for those cardinal signs, of course, the condition, postural orthostatic tachycardia syndrome, tachycardia is the cardinal sign. That is what we're looking for is with positional changes that, um, For example, when someone goes from laying down to sitting up or standing up, they have a heart rate increase of 30 beats per minute or more.

And in children or teens, it should be [00:15:34] 40 beats, although that is arguable, whether that's what the diagnostic criteria will say. So just seeing if they have that pretty dramatic heart rate increase. Um, a misnomer sometimes is this concept of orthostatic. People think blood pressure. Blood pressure is.

It's kind of, it is relevant, but it's not the cardinal thing that we're looking at here. And so if you are measuring vitals, it's good to record everything, but blood pressure is not necessary. Um, those changes are not necessary. And specifically even a drop in blood pressure is very, very common. Um, and so that doesn't mean they automatically have orthostatic hypotension.

Um, a lot of times that drop is then followed by an increase in blood pressure and, um, You can leave that to the diagnosticians hopefully to, to look at that, but really that heart rate increase and then someone feeling faint, um, you know, seeing black, their vision changing, those visual disturbances, leg weakness, [00:16:34] palpitations, um, chest pain.

Um, as well as just overall like they might get nauseous, they might feel like they're going to paint faint. That's the most common presentation is this pre syncope or I feel like I'm about to pass out. Um, only about a third of patients actually do pass out. So if you're seeing any of those kinds of things, that should be a red flag.

And then also recognizing these other co occurring conditions can, um, can happen with it. And, you know, what's the role of those as well.

[00:17:05] Mark Kargela: I'd like to touch upon a little bit of those co occurring conditions. You already alluded to Ehlers Danlos, and I've, uh, spoke to you a little bit before this. Like, I've had a few patients where It was definitely apparent that hypermobility, bite and scale, all the things were lining up and then also having some of the, um, postural orthostatic tachycardia syndrome symptoms as well.

That was kind of the precursor to like, Hey, we need to get you to see somebody. Before we get in maybe to these other core existing, what, what would you recommend clinicians do who are starting to see this? You're, you're, you're [00:17:34] right. I mean, we're not diagnosticians. We're not there to like label folks with those things, but what, what would you recommend?

And then what would you expect? Like some testing that would be done for somebody, like if you were to. Try to prepare somebody who's going to get under, go testing for POTS and you wanted to kind of lay a little bit of groundwork of, hey, you can expect to see X, Y, and Z, and here's what likely they're going to do, and here's what you should expect, because I'm sure you're similar to myself, where we know sometimes when the medical machine gets running, people just get trucked through and there's not a lot of explanatory stuff, so I We try to prepare our patients so they don't feel like they're just getting scurried along without not knowing what the heck's going on.

But I'm wondering if you could kind of go over a little bit of that.

[00:18:09] Emily Rich: It reminds me of a patient I just had the other day who'd been seeing me, but then was going in to get a tilt test, which Tilt tests are found in many communities. It doesn't mean it's going to be full autonomic testing like they would do at somewhere specialized like Mayo or Vanderbilt, but, um, it's just basically someone gets strapped down to a table and they are incrementally put up into an upright position, um, and their blood [00:18:34] pressure, heart rate, vitals, those are all measured, um, at those different points in time.

And the hope is they can sustain 10 minutes where they're recording that information for 10 minutes. Um, I just had a patient who went and she was told, um, just do everything normal, drink as much fluid and electrolytes. I had been working with her on symptom management and wear your compression garments.

Nobody told her to take her compression off. So they did the test with her compression garments on and she had all the fluids and salt and everything. And so, oh, I so wish that I had gone through it better with her. I didn't realize they were going to. I think make that error, but, um, you know, don't use those those aids because we that's the point where they're trying to diagnose, but typically patients going to have some sort of a tilt test or more commonly than anything else would be just an active stand test.

And that's something that. You know, any clinician can do in the clinic, um, having a patient lay down for at least five minutes, maybe 10 in a quiet, non stimulating [00:19:34] environment where they're relaxed and checking their vitals at rest. And then what we do is just have them stand in that upright position and measure those vitals again, at least every two minutes for 10 minutes.

Um, 10 minutes is the ideal. Now if they feel like they're going to pass out and they need to sit down, that's a different story. But sometimes we don't capture this stuff within a minute or two, and it is important that we have, you know, that full 10 minutes. So, um, if they go to a specialty center, they might have more thorough autonomic testing, which could include like a QSAR test, like looking for their sweat reflexes, um, and full autonomic testing.

And so, um, there's other things that come with that, but. Um, hopefully at a specialty center, they're going to explain that a little bit better. Um, but I would say the vast majority of communities, people are going to have an active stand test or a tilt test that may or may not be done exceptionally well.

And so we might have to read between the lines in the clinic and just kind of help patients when they may be [00:20:34] frustrated if, you know, they don't get that diagnosis because that day they didn't have the heart rate increase. Um, Those kinds of things.

[00:20:41] Mark Kargela: Good points because I think, you know, sometimes if, if the diagnostician isn't very well versed with the nuance of how this testing needs to be and taking some of these assistive kind of modes of compression garments and electrolytes and all these things on board may not elicit the response through some of the things they're doing already proactively to prevent the response in general.

You, we've talked to the Ehlers Danlos and then also mass cell syndrome seems to be something that has been linked with these kind of like a triad, I guess, of coexisting conditions. Although you mentioned there's other systems involved, GI system and various other things. I'm wondering if you could speak to a little bit of that kind of interrelationship of those.

I know we're still figuring out how that all kind of perfectly fits together, but maybe your understanding of it and how you, um, Maybe explain that all to a patient too, because I think when they see I got [00:21:34] hypermobility and then my heart's doing this and I'm feeling visual and all these, you know, almost near fainting spells and sometimes fainting, like you said, and then hyper, you know, uh, sensitivity from almost like autoimmunity or, you know, really trying to think of the multi chemical sensitivities and different things like that.

I'm wondering if you can speak to that a little bit.

[00:21:52] Emily Rich: It's overwhelming and many times a patient comes to me with one of these diagnoses and fortunately or unfortunately, I'm often the person that says, ooh, I think there might be something else going on too. Um, and usually I would say that's met with, oh, okay, this is good information for me to have, thank you, but I also tell patients, This isn't something new.

This isn't something new that popped up and you're just going to be like waiting for the next shoe to drop. It's something that has always been going on with you. Um, or maybe you had some sort of illness like COVID or something that caused those symptoms to turn on. Um, but it's not like you're going to just be waiting to have another diagnosis every day for the rest of your life.

And so it [00:22:34] can be so helpful for patients to connect to these things. Okay, so what are these things? Um, I, I always talk about Ehlers Danlos syndrome, especially the hypermobile form of Ehlers Danlos syndrome, which is the only type we don't have the genetic test for, um, that that is the umbrella that causes the other things.

Now, other people have mast cell diseases and POTS without having EDS. So it's not that every patient has them all, but if they do have hypermobility going on, and even if it's, just kind of, um, systemic, like hypermobility spectrum disorder, they don't fit all the criteria for EDS. I still consider that to be kind of the over the umbrella that causes everything else.

And the mate, the way that I describe it to patients is very layman's terms because I think it's helpful. Um, and that's usually just to say, like, everything's made up of collagen and you're more stretchy. Um, your blood vessels are more stretchy. And so that's part of why you have POTS. [00:23:34] is that when you stand up, your blood vessels stretch and don't constrict or push the blood up as well to your heart.

And so your heart works really hard to try and make that blood flow throughout your body. Doesn't mean you have a heart condition. This is not a heart condition. That's important distinction. It's a neurological condition. Um, and then in terms of the mass cell stuff, which for anyone who doesn't know, I say, mass cell stuff, which sounds so silly, but, you know, now we call the muscle diseases muscle activation syndrome is one specific type.

There's massive cytosis. But the, the. The gist of all of these mast cell things, um, is a hypersensitivity of these allergy cells, mast cells being allergy cells. And so the body starts to react to things that it otherwise shouldn't. For example, the sun, um, heat, vibration, um, insect bites, you know, fragrances.

perfumes. These are the patients [00:24:34] who go into a lobby and if someone has strong perfumes, they do not do well. And they can look like very high maintenance patients, but we really just try and do our best to accommodate them because they really need support. And so how does that link to all the rest of this?

Oh man, I wish I knew. I think it's so under debate. Um, But the reality is that we have mast cells everywhere, including our gut. They just are filling, filled in our gut. And so the gastrointestinal symptoms are often significantly improved with treatment of MCAS or mast cell diseases. Um, amongst other things, and the interplay between mast cell and POTS especially is fascinating, um, because they just make each other worse all the time, you know, exercise and fatigue make mast cell symptoms worse.

People with POTS have exercise intolerance, um, and often get fatigued as well as those with Ehlers Danlos. So, it's hard to know exactly. I think more and more this stuff is looking [00:25:34] autoimmune and we're getting more answers that really pushes in the direction of something autoimmune. Um, I mentioned concussion and illness causing POTS, um, but really a large percentage of POTS is caused by some autoimmune condition as well, Sjogren's being the number one.

So it's, it's really uncertain, even if, um, hypermobile Ehlers Danlos is a type of Ehlers Danlos, or if it's going to be something different there. discussing that right now. So, so really I don't have concrete answers, but that's how I see them fitting together. They definitely go together in way too large of a percentage of patients for it to be dismissed.

Um, but we still have so much to learn in terms of understanding why.

[00:26:14] Mark Kargela: That was a great rundown. I really appreciate that. The, with the COVID of course, post viral issues have really taken a forefront. Although, you know, speaking to Derri Aller recently, she talked about now the people that were dealing with post viral things.

That weren't for pre COVID now feel a lot more vindication because now it's being much more recognize that, Hey, what we [00:26:34] deal with is real medicine. Hey, hello to us. But, um, with that said, how do you like, cause a lot of times this just is a massive one 80 in somebody's life. Like, especially if it's a post viral new thing, like not that it's ever not a big blow to somebody's life, of course, but how do you help somebody manage this?

I think OTs do a wonderful job and are like, if you have an OT in your practice, you need to make sure you lean on your OTs. Cause they're great at helping. Patients, because I think PTs have this, I need to fix it, right? I need to fix it. I need to go in there and find it and fix it. And it ain't happening with some of these chronic conditions.

OTs are amazing at helping people adapt and manage and successfully live well with these conditions. I'm wondering, like, for clinicians that are out there, like, maybe seeing some of these patients and like, Man, I don't even know where to start or what to do. What would you recommend as, like, maybe some ways to start helping these folks maybe navigate things a little bit more effectively?

[00:27:27] Emily Rich: Where to start is always such a hard question for clinicians who aren't, don't have experience with [00:27:34] this population, and it's so understandable. Um, patient comes in and it's like, you know, I get 90 minute evals, which is amazing, but it can be so hard to, um, to choose what's the most important. So, um, So how do you choose?

I think that no matter what, especially given that this talk is primarily about POTS, um, if we're looking at a patient with POTS, I always want to start with the basic lifestyle measures that we know will help your POTS symptoms. Is it going to be enough? I don't know, but many times it makes a huge difference.

And so those basic lifestyle measures are increasing fluid. If they're not already drinking a lot, which a lot of these patients are, but you know, making sure the fluid is At the right level, um, increasing sodium, most patients are not getting enough sodium, and that's a whole conversation, and really breaking that down for patients, and I suggest physical therapists do this too, you know, really like, whether you have a [00:28:34] handout, um, You know, or if you are able to just give them some generic guidelines about nutrition and reading labels to say, this is the amount of sodium you need in a day, and these are some foods that are high in it, or a Gatorade is not great.

What's something else that has a lot more sodium in it for you. So fluid, sodium, third would be compression, garments, and lower body compression specifically, as well as an abdominal binder. Um, and I have those in the clinic, so I have patients especially try an abdominal binder on, just see their response, but it's easy enough to buy a pair of compression leggings, or if nothing else, compression socks.

And then fourth is exercise, which is a whole can of worms, but, um, that is an important aspect to treatment. And then last is really kind of weird, but it's elevating the head of the bed four to six inches. And that's not just propping your head up four to six inches, but actually your entire bed needs to be at an angle.

So either a full body wedge or [00:29:34] using, which is easier to find, um, cinder blocks or bricks or bed risers and just elevating the frame of the bed or, or elevating the mattress at the head. And there's a lot of reasons why that's believed to help, but even just starting with a couple of those measures, patients often come back their second visit and they're like, I feel so much better already.

And then we get to say, okay, now what's left? There's definitely stuff left. That's not it. Um, but it, it helps a lot, I think, um, to start with those well researched, known to be effective in majority of patients that their doctor probably told them at least a couple of those, but their doctor had five minutes to tell them their diagnosis, their results, everything.

And then, um, It wasn't enough. They needed more information.

[00:30:19] Mark Kargela: That's great stuff. And um, exercise obviously becomes, you know, it's the PT, you know, Swiss Army knife of everything. Like, we want to throw exercise at everything. Yet, there's a very nuanced approach with exercise when it comes to this population.

I'm wondering if you can share, [00:30:34] and it could be from personal experience and obviously from your clinical practice as well as where you see exercise kind of being dialed into the unique person versus Maybe shoehorned somebody into maybe a intensity and volume or various, uh, you know, parameters of exercise that may not fit that person with these unique diagnoses.

[00:30:53] Emily Rich: Please never use a prescriptive, um, calendar that is given and give that to your patient and then they go off because you don't know what you're doing or you don't want to treat them. If you don't want to treat them, send someone else, but I've had too many patients that have been told, Here is what you need to do.

I don't need to see you again. You need to do this on your own. Like, yeah, right, um, is a really hard thing to do, and it would take, uh, man, such a personality to be able to pull that off by themselves. So, um, so what should you do? Um, yes, exercise is important, and it is terrifying and really hard for these patients.

And, um, I think [00:31:34] hopefully you can have empathy for that and to know that there's enough research to show us that although exercise can significantly help in many patients. It's not the, the fix for everyone. And it is still really hard in the people where it is really effective. And it's not for a lack of trying.

We now have enough research to show that there's so many other things going on. These patients are trying, but it's really challenging. So where do you start when you're, um, A physical therapist, especially, or exercise physiologist, or someone trying to, you know, really use exercise. I would start with what I just said, um, and actually, like, really take the intensity, the pressure off of them.

Um, because they've likely had a bad experience or have heard about how awful PT is for POTS. Um, the other thing is start incredibly slow. Um, If you don't have experience with this population yet, I would highly recommend you learn a little bit about chronic [00:32:34] fatigue syndrome, myalgic encephalomyelitis, um, long COVID, those kinds, there's so much more out there than there used to be, um, but it is really important that we don't push these patients too hard from the beginning and that we, you know, screen for post exertional malaise, post exertional symptom exacerbation, because we actually can do more harm if these patients are having post exertional malaise or PEM and we push them and they are not able to get out of bed the next day.

So hopefully you screen for that using something like the DePaul PEM screener or something that's free online. Like just please at least try that. Don't do the six minute walk test on your first day with the patient. Um, Then, if you're, if they're doing well, and it seems like, nope, that's not a part of their picture, um, there are resources for you.

I would say that, you know, there are two exceptional research, resources out there right now. One is from Utah, uh, ADAPT [00:33:34] program, and it's the Autonomic, uh, Disorders, Physical Therapy, something program. And that's free online. They have great resources for patients, handouts for patients, um, a whole, uh, protocol, basically, that is able to be customized for patients and therapists together.

And then the other option is the Children's Hospital of Philadelphia, CHOP, adapted a protocol many years ago, and that has since been revised. And so just this last year, um, in 2023 or 2024, they came out with a new version of that that's a little bit better. Um, but I think the key is making that individualized and, you know, Ultimately all of these protocols start recumbent in a reclined position.

Most patients are going to need to start laying down, completely laying down, um, and the ADAPT program has a measure, actually both programs I believe, have a way to determine where you should start a patient. If they should start in reclined, [00:34:34] supine, or seated, or standing, but I would always pretty much default to a supine position and see how they do.

And then eventually you can progress to operate using a combination of cardio and strength training.

[00:34:49] Mark Kargela: Huge pearls for all you listening. Um, hopefully you're taking notes and we'll link some of these resources in the show notes so y'all can check them out. I have actually used the. Children's Hospital of Philadelphia's protocol and it's very helpful, um, as far as really gives you some good ideas and like you said, to customize it to the unique person in front of you.

You rightly criticized this. Here's your schedule and calendar for the six months. Go ahead and rehab yourself. Which doesn't work well for a lot of patients. I'm wondering where you think virtual care might fit within this population, um, to maybe help guide them when, you know, some of the, you know, it can be hard work, especially when You're dealing with post exertional malaise and various challenges with some of the conditions that we're speaking of today.

Sometimes [00:35:34] travel is hard, especially if they're not, you know, right near a clinic where it's going to be a decent drive and things like that. Where have you found like virtual care kind of fitting into this picture?

[00:35:43] Emily Rich: It's huge. It's hugely beneficial for this population. And I, that was a piece of COVID that was so helpful.

Um, occupational therapists have always said, you know, and, and PTs too, that home health and being able to do virtual services allows you to see their home environment and understand. Like who this person really is and a very different appreciation. Um, and I think that COVID allowed us to see that as well as you are going to cancel your appointment because you didn't have transportation or you didn't have the spoons or the energy to get here today.

Um, well now we can just switch to virtual. And so that helped even, you know, years following COVID of, um, we can switch the appointment last minute to a virtual visit and that way I had my cancellation rate was much lower. Which was really great. So I know there are many [00:36:34] therapists that are doing virtual care exclusively with this patient population and finding it hugely beneficial.

There are definitely, um, limitations, you know, not having a recumbent bike or row machine or having, you know, the types of equipment and being able to do hands on care and really be, um, safety is safety conscious. But that being said, the follow through is so much better because it's like, well, what do you actually have at home?

Yeah. Um, you have a yoga block, you have a chair, you have a bed, you know, okay, how can we make do with what you have, some cans of soup, um, and really trying to make that accessible for patients at home, um, because I can't tell you how many times a patient has told me. Well, I get home and I just don't know how to do this, like I, I can't figure out the surface that's right.

I can't figure out where, and you add in many of these patients are neurodivergent, you know, have ADHD or autism or something like that. And it's a big hurdle to say, you know, to use the executive functioning skills to figure out the place in my house. [00:37:34] Um, where I'm going to do it, when I'm going to do it, you know, and so really breaking all those things down.

I think virtual care breaks down a lot of those barriers and helps patients to be more successful with follow through.

[00:37:45] Mark Kargela: I've had a few patients with, you know, some of these complex conditions and just the ability to meet them on a virtual medium. And it takes this kind of recognition as a, especially physical therapist, I think OTs, I think naturally just, this is a lot easier for them.

They really are naturally able to just adapt to the person's environment or PT is just like. If I can't put somebody on a mat or like, you know, do some hands on stuff, I sometimes feel, not all PTs, but I know for me, it was definitely the case. And I think this whole coaching and kind of guiding perspective versus this, like need to be this swooping in and fixing and saving the day type thing, especially when it's not probably going to happen for a lot of these complex conditions, it's putting the patient as the hero of the story.

And you're just the guide and helping them kind of conquer some of these challenges that let them live some more meaningful lives. Have you found that, [00:38:34] like, just in your OT training, that that just feels like a natural thing for you versus like your PT colleagues? And you can dog some PT colleagues. I, I know for me, I'm not, you would ever be mean, but I mean, I, I got to imagine you kind of look and see some PTs who might not, it takes them a little bit of adapting to that maybe approach of how they kind of work with patients.

[00:38:51] Emily Rich: 100%. Yeah, I think it is a strength of our occupational therapists to empower patients to do it on their own. Um, it's not about what I can do for you. It's how I can help you help yourself. And, um, I joke that OTs have to be humble because often, you know, patients will go back into their doctor and they'll say, Um, yeah, I'm doing really well, and they'll ask, you know, why, what happened, what changed?

Well, I do this, this, and this, and I just, I just figured it all out, you know, I figured these things out, and it's like, Would you have figured it out without OT? I don't know, but I'm so glad that you feel that way because what that means is you're going to be able to problem solve for yourself in the future.

And that's my whole [00:39:34] goal. Um, you know, you mentioned adaptation earlier. That's the, there's a theory called occupational adaptation that I used in my PhD research and created a model based off of that because my whole goal is that they, learn tools and learn concepts that then they translate into many other areas of life and they general, they generalize those so that in the future they're able to adapt and to kind of, um, make changes as needed because we all have to adapt every day of our lives.

That's just the nature of, you know, being human. And so, um, yeah, it's not about what I can do for them, it's about how I can help them help themselves.

[00:40:15] Mark Kargela: That is interesting, you know, and I can see how patients would go into when you've truly been the guide and they've seen, I figured all those things out and then they don't really credit it, but would they have done it without?

That guide by the side who kind of helped them kind of find their way Which I think in the end it's almost like humbling and it feels like man I did my job because that is they're seeing themselves as the hero of the [00:40:34] story Which in my earlier egotistical? Like very imposter and insecure parts of my career I would have been kind of maybe a little bit challenged with that But now I think that to me is like job well done on on our parts if that's where the patient kind of goes into the Physician reporting and all that success in their world.

So fear is part of this and you mentioned how some of this stuff is terrifying when when our patients are engaging in some of these things that are absolutely from what they've experienced and their story leading up to Us asking them to exercise or us asking them to do something in clinic How much do you consider like formal exposure based principles, like where you're understanding you guys, I know, and I know, I know where I think what the answer is going to be, but there's the photo and all these different tools of kind of measuring where people are on their fear hierarchies and really trying to structure.

how we're asking people to do things. Obviously, there's some concepts of positions and different things when we're working with POTS, but there's also that fear and exposure based load. I think sometimes, a lot of times I should say, clinicians don't [00:41:34] understand that there's a massive psychological load that they're putting upon a patient when they ask them to do something that is laced with a litany of horrible experiences in their background.

How often do you really are purposeful in your consideration of those things?

[00:41:47] Emily Rich: What a great question. Yeah, I, I think that my, so my gut reaction when you ask about fear and conditioning is there was this paper that came out two summers ago, I think it was, and they basically was out of, I think, NYU. And they basically said that people with POTS have a fear of standing up.

I mean, that was their conclusion was that it was anxiety driven. And so my gut is like, wait, no, no, no. Um, and that being said, Of course, there is a component, um, that is really important for us to take into consideration in our therapy. So I think, first and foremost, um, it is not anxiety that is causing the POTS symptoms.

It's a physiologic, you know, thing that is distinctly different from panic disorder, and that has been shown time and time again. Now, [00:42:34] does anxiety and fear play, you know, feed into exacerbation of symptoms? 100%. And the number of long COVID patients that I've had that have said, um, I've never had anxiety in my life and all of a sudden I'm anxious.

Um, I think that shows how feeling these symptoms of tachycardia palpitations, chest pain. I mean, that's terrifying, especially if it's a sudden onset. Many of these patients have had it for years, but that in itself is scary. And the bodies. response is to sit back down to lay back down. And many times that's when we see patients that get bedridden.

Um, and it just gets worse. They get more deconditioned and of course they get more symptoms. The deconditioning wasn't the cause, the anxiety wasn't the cause, but it gets further worsened through that. So, how do I do that in my practice? I think that, for one, I try to make things very purposeful and, um, not, not saying that I'm [00:43:34] distracting a patient from symptoms purely to distract them, but to recognize that what we pay attention to is going to be, you know, where, um, Where the power is and where our focus is.

And so if I'm able to say like, you need to be able to cook yourself a meal, the microwave, you know, whatever that looks like, we're going to have a chair close by and you are welcome to just go sit back down in that chair anytime. Like, I'm not going to keep you standing up here. Um, One thought is that thing I taught you of these counter pressure maneuvers where you go up on your heels and rock back, you know, and lift your toes.

Um, maybe that's something that we could consider when you're standing in the microwave and just see if you feel any better with those, you know, asking those kinds of questions. Um, but I would say that I try not to draw attention to the symptoms and Try to make the activity what we would say occupation based.

But I think PT would say like purposeful or intentional [00:44:34] activities. Um, and with that, like not just having people stand just to practice standing. I mean, getting up is one thing, but this isn't like maybe in an inpatient rehab setting where you're trying to increase endurance and you just have them standing at a table playing a card game.

That's not what's going to be helpful for POTS rehab. And so, um, yeah, just really looking at their normal day and where it is that the barriers are, and just offering a menu of options. Like you can sit down, you can do counter pressure maneuvers. You could try this from this position, um, and having them like have autonomy in that sense of choice, um, I think can be really empowering.

[00:45:13] Mark Kargela: . I second the kind of occupationally specific exercises versus Sometimes I think we have this tendency I know definitely from a physio standpoint of like we put the symptoms on spotlight where we're just like doing something on the lookout for our symptoms, which to me just makes it all that much more of an anxiety.

But when we can put it into a valued activity that gets what [00:45:34] we want and gets them maybe exposed to some of the things we're hoping to expose them to, but their symptoms aren't on spotlight like waiting to be found or looked at where we can kind of. You know, obviously give them, like you said, the autonomy to make decisions on whether they want to pull the plug on it and stop or continue on.

But yeah, I think that is, that is something I, innately I don't think we do well as, definitely physios, again, occupational therapists ahead of us a bit on that one. Um, we could talk about this. I know I could nerd out with you on this for, for even hours more, but I'd love to hear a little bit about the research you've been up to.

We spoke a little bit before we went on, um, and then maybe kind of also what you're up to. Cause I think you're a person who's leading the way helping educate some of our clinicians who are trying to figure out how do I manage this in the most efficient way that's, that, that kind of gets ideally the best outcomes possible for people.

[00:46:22] Emily Rich: Just one note to mark on that, um, paying attention to symptoms, I know that especially from a cardio pulmonary rehab standpoint, people really like to measure heart rate and look at those kind of [00:46:34] exertional components. And I just can't stress enough how much I appreciate using like rate of perceived exertion, um, like the Borg scale and not having heart rate monitoring, even though that may be what you're considering.

Gut says, and I need outcomes. I need objective outcomes. Really just trying to take the focus away from those symptoms and considering more of like, breathlessness and how my body feels overall, because we know the heart's gonna go up. We know there's tachycardia. It doesn't really change anything. Um, but yeah, I, I would love to, to share a little about my research.

So I, in my dissertation, worked for my PhD, I did a study. Looking at, um, we called it multimodal group rehabilitation. So it was myself and a physical therapist who's also a Pilates instructor, who I work closely with, and she sees a lot of, um, my patients. And Pilates works really naturally with POTS, because you can do a lot from a supine position, and then of course from a seated or reclined position as well.

So we use that [00:47:34] combined with, um, Nordic pole walking, which we ended up not continuing. We've continued this program, not in research setting, but we've ended up just switching to just Pilates. Um, so that has been more favorable amongst the patients. So it's movement with Pilates coupled with education.

And that can look like education on fluid, sodium, compression, those kinds of things, as well as sleep hygiene, energy conservation, fatigue management, pain management, cognitive pieces, um, condition management, autonomic nervous system, you know, helping to empower patients with, um, What is going on in their bodies?

Um, and then the third component is mindful self compassion. So you asked about, you know, sort of that mental health piece and it cannot be ignored. And so really leaning into it to say, I know this isn't in your head. Um, I recognize that it's hard to see a psychologist. Um, and it's hard to not know for sure if they're going to be safe in terms of not dismissing it as anxiety.[00:48:34]

But there's a real benefit to mindfulness. There's a real benefit to um, diaphragmatic breathing. And when we are more gentle with ourselves, the research is fascinating for mindful self compassion in terms of, um, the outcomes of, you know, being able to give more to others, being able to take care of ourselves better and take care of our health, rather than using shame and self criticism.

And so, yeah, it was hour long sessions over eight weeks, uh, once a week, and we had incredible outcomes, including improvement in function on the LEFS, and then even things like, um, grip speed and gait, uh, speed, grip strength and gait speed, I'm sorry, um, both improved significantly in the cohorts, um, As well as things like quality of life and, uh, cognitive measures.

So really just this idea of using multiple approaches and being creative with options for patients, um, in a group setting [00:49:34] where they had just this beautiful, like, peer interaction and support, and then, um, doing that with a occupational therapist and a physical therapist, which was really cool to get to collaborate in that way.

[00:49:45] Mark Kargela: Yeah, no, as you can hear, I mean, Emily knows her stuff around these topics. And I mean, kudos to you for that study. I think it's obviously going to add awesome to the body of knowledge that we have around this and you're, you're one of the people kind of helping lead the way to kind of help us better understand and manage it with that said, folks have the opportunity to kind of learn from you, which I think would be a huge thing.

And I'd highly recommend it as far as. If this podcast isn't evidence enough that you'd be worth time to hang out with and, um, or learn from the courses that you have. What is the course you have? And, and so I think it's, I'm not aware of another one that, that helps clinicians in this realm, but could you speak to it a little bit?

[00:50:23] Emily Rich: , I don't know of anything else that trains therapists on POTS, and so that's why I created it. I had so many therapists reaching out to me, wanting mentorship, and, you know, I'd have all these [00:50:34] calls, and then like, I don't have time to do this. How do I? reach more people in an effective, efficient way.

And so I created the course, um, and it's called the POTS Providers Course. You can find it on my website at otemily. com. And, um, yeah, it's just, it's got eight hours. content and you can, many people have submitted to their state or national organizations for CEU credits successfully. Um, and so it's open to any like physical therapists, physiotherapists, occupational therapists, as well as we've had like, Cairo's sign up and even, you know, P.

A. S. And N. P. S. And physicians, um, who just want to understand better what they can do for their patients from a non pharmacologic standpoint. And so the course includes, you know, everything from energy conservation, fatigue management, pain management, um, cognitive issues, exercise is a huge piece of it.

And, um, Geneva Kaplan Smith is the physical therapist who I work with, and she's [00:51:34] on there talking about that, as well as Dr. Brent Goodman, who's a neurologist and world renowned expert. He is on there talking about the medical side of things, and so it's a really great, um, I think, option for people to just view at their own pace, you know, listen to it or watch, um, on your way into work or between patients, and then, There are probably the most, the thing people love the most is just the handouts.

There's handouts for providers and handouts for patients. So when I talked about to teach them about salt, you know, it's like, I don't know how, I don't know about the electrolyte options. Um, you can just print that out and hand that to your patients. And I update that regularly and you just get it, you know, the, the most recent version.

So, um, so that's, that's what I offer. I also offer a lot of free education and, um, resources on my Instagram, which is at emilyrichot, and, um, that has a lot of patients, and it also has a lot of providers on it, and that thing is just, it's exploded, I met like 27, [00:52:34] 000 followers, which just blows my mind, um, because it was started as just a little passion project to, you know, interact with patients around the country, um, and so that's really fun, and then, um, Soon, I'm going to have a patient option being launched.

I don't have a date for that yet, but, um, more to come that hopefully will offer another resource for therapists to be able to connect their patients with to continue their care and to fill the gap maybe where they don't have a lifestyle person like an occupational therapist on their team.

[00:53:03] Mark Kargela: Awesome resources.

And I, we will link all of it in the show notes and, uh, thank you so much for your time today. And most, most importantly, thank you so much for the work you're doing. I think obviously you're making a massive impact in, in the world of pots. I know you're too humble to say it, but I'm going to say it for you.

Um, cause it's, you're doing great work and it's, it's been awesome to talk to you today. So thank you so much.

[00:53:25] Emily Rich: Thank you so much, Mark.

[00:53:27] Mark Kargela: All right. For those of you watching on YouTube, we'd love if you could subscribe or share this episode. Maybe, you know, somebody who's dealing with POTS, EDS, or mast [00:53:34] cell syndrome, and this could help them maybe navigate their situation a little bit better.

If you're listening to it, we'd love if you could subscribe wherever you're listening to the podcast, we're going to leave it there this week. You all have a great week and we'll talk to you all next week.

[00:53:46] Announcer: This has been another episode of the Modern Pain Podcast with Dr. Mark Kargela. Join us next time as we continue our journey to help change the story around pain. For more information on the show, visit modernpaincare. com. This podcast is for educational and informational purposes only. It is not a substitute for medical advice or treatment.

Please consult a licensed professional for your specific medical needs. Changing the story around pain. This is the Modern Pain Podcast.