Group Rehabilitation for POTS with Emily Rich, OT

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Dr. Linda Bluestein: [00:00:00] Welcome back, every Bendy Body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the hypermobility MD. My guest today is Emily Rich. Emily is an occupational therapist specializing in treating dysautonomia, Ehlers Danlos syndrome, hypermobility spectrum disorders, long COVID, and other chronic conditions.

Emily is a fellow patient with hypermobile EDS. POTS and Mast Cell Activation Syndrome. She just defended her PhD dissertation on POTS and rehabilitation. We know that these conditions cause a lot of challenges with completing everyday tasks and fulfilling work responsibilities, which is why this is such an important conversation.

Stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. So let's get into it. [00:01:00] Well, I'm so excited to be here today with Emily Rich, occupational therapist, because this is such an important topic for people with EDS, HSD, POTS, all of these conditions, right?

Yes. All of the alphabet soup, right? That's what we all see. All the alphabet letters. Yes. Yes, for sure. We love our acronyms, don't we? Yes.

Emily Rich: Yes.

Dr. Linda Bluestein: Yeah. All right. Um, let's start with a really Unusual topic, I think, in a way, because I don't think most people think of occupational therapy when they think of POTS, but I know this is your area of specialization, so I really want to talk about that.

So can you tell us what occupational therapy looks like for people with POTS, or postural orthostatic tachycardia syndrome, for those that are not familiar with that acronym?

Emily Rich: Absolutely. Yeah. My, my whole goal in life right now is to make occupational therapists think about POTS. And so those things do go together, but you're absolutely right.

That's not something that people think about when they think about POTS treatment. [00:02:00] Um, so occupational therapy is basically helping people get back to doing their life. So being able to do the things you need and want to do in daily life, like drive a car, Get good rest. You know, sleep is considered an occupation.

It's not just what we do at work. It's anything that occupies our time in day to day life. And so my whole goal for people with POTS is to find ways to get them back to doing the things that matter to them. And that might be through modifying and compensating, adapting daily life kinds of things. So maybe that's getting help when you need it, or using a tool or device or sitting down in the shower, Um, and it's also rehabilitation, which traditionally people might think of physical therapy for, but, um, getting back endurance, getting back strength, getting back skills that maybe we've lost since we've had POTS symptoms come on board.

Dr. Linda Bluestein: And, uh, just to elaborate on the POTS symptoms that people might be experiencing in case someone's listening to this. And so we're talking about [00:03:00] people like in the shower, they might be dizzy when they're standing up and they feel those palpitations, tachycardia, especially with upright posture. Um, I bet you see a lot of people who are complaining of brain fog.

Cause of course that's a really common symptom as well. Right.

Emily Rich: Yes. I tend to get all the things that people don't have any solution for yet. Right. These are the residual things and yeah, it's that lightheadedness. You know, our whole world is upright, right? That's where we do most of our things. And so POTS really affects almost everything you do in daily life from those symptoms of feeling faint or actually fainting.

So, yeah.

Dr. Linda Bluestein: And what do occupational therapists do for people that have hypermobility, whether it be hypermobility spectrum disorder or Ehlers Danlos syndromes?

Emily Rich: Yeah. So similar in terms of getting back to daily life function, but It looks a little different in terms of, um, you know, people with BDS or HSD might more have pain, significant pain.

Um, they might also have issues with [00:04:00] sleep, definitely the fatigue, the brain fog. And so we're doing things to help them be able to do the things they want to do with less pain, modifying tasks, you know, whether that is using your pencil differently, or, um, it's using a tool so that you don't have to. Um, use your shoulder as much or, you know, trying to help those joints to stay in place better, um, as well as things like managing fatigue, you know, pacing, energy conservation strategies.

Um, the whole gamut of, of all those kinds of symptoms and just really looking at how do we help people be able to do daily life.

Dr. Linda Bluestein: Yeah. And so many of those things are so challenging. I have a lot of, uh, patients who will, especially if they're still in school and they have to navigate, uh, backpacks and, you know, heavy bags and because they don't, some schools now either they don't have lockers or they're not allowed to go to their locker between class.

These are some of the things that I hear.

Emily Rich: Absolutely. It's, it's a big deal, right? And when we do those every single day, you know, students going to school, [00:05:00] that takes up a lot of time that it really takes a toll on the body. So I'm always, I'm always excited when someone finds something that they do repetitively, because it's like, Ooh, this is a big bang for our buck, you know, that we can adjust this.

It's going to make a big difference.

Dr. Linda Bluestein: And there's the practicalities of, you know, well, telling a 16 year old to carry around a wheeled backpack is not exactly something that they, yeah, not, not something they really want to do. So, so what kind of, um, tips do you have for that specifically, since we're, you know, do you have any thoughts about, uh, people who, you know, I see all the time people with a big heavy bag, like on one shoulder, for example, or, yeah, yes, yeah.

We don't

Emily Rich: want to do that. I love that. This is what we don't want to do. Um, no, definitely getting, um, you know, second versions of textbooks. I think that people don't use textbooks quite as much anymore. Now it's more computer based, but can we hold our computer in our hands? Um, can we distribute the weight so that [00:06:00] some of the weight is on my back and I'm also carrying some of that.

Um, everybody has big water bottles now, and I, I'm a fan of that, especially if we have pots. Um, But if you can, carry the water bottle or put it on a different strap, maybe even a crossbody strap or something. So that you are again, distributing that way that's not all pulling back on your shoulders, pulling on your back.

Um, and then of course, as you mentioned, if you can use wheeled kinds of things, or if you can have duplicates of things in multiple locations so that you're not carrying books and laptops back and forth from school to home, um, just minimizing that distance that they have to be carried.

Dr. Linda Bluestein: I like the idea of putting the water bottle on a cross body strap because also the closer things are to our core, right?

The easier it is as well.

Emily Rich: Yes, that's something that I teach patients every day, pretty much, you know, is keeping things close to your body, bringing your elbow in toward your side. You're going to have a lot more control and a lot more stability through your wrist and through your hands. Um, so that's true for all kinds of different things.

Yeah.

Dr. Linda Bluestein: I had, I had one patient who [00:07:00] was having a lot of neck pain and she was in physical therapy and still not doing great. And then I saw her come in for an appointment and she had this big heavy bag and you could see how it was like contorting her body and yeah, it's like, we need to work on that. So

Emily Rich: yes, we need mirrors everywhere we go to see the things that it's doing to our bodies.

Yeah.

Dr. Linda Bluestein: Right. Um, tell us a little bit about your research efforts into POTS. Thanks. Thanks.

Emily Rich: Yeah, so I'm wrapping up my dissertation and my PhD now. Um, I just defended and so I'm in the, we're just waiting phase for, uh, that to all get finalized. But my research recently has been in creating a group based program for POTS, basically for POTS self management.

So you think about arthritis, you think about diabetes, these other conditions have Kind of a program when you get diagnosed you go through this program or if you're having a flare You know, you can learn more about what to do, but that doesn't exist for POTS and it doesn't really exist for EDS either so, um, so I [00:08:00] went on this mission to create a curriculum and then we piloted it and we've now been doing it for uh, Three years.

So we run about 10, almost 11 groups. Um, and in my community, yeah. And we did some data collection on the first year. And then I revised that, um, program based on what we, we found. We did some, um, numbers or quantitative analysis, as well as some qualitative, some focus group, um, asking the participants, what was your experience?

What did you like? What did you not like? And we revised it. And so that's what my dissertation was. And so now we call it the multimodal group rehabilitation program, which uses occupational therapy and physical therapy across eight weeks to use three different things. One is education. So teaching people skills, teaching them about their autonomic nervous system and what they can do, um, sleep hygiene and fatigue management coupled with, uh, [00:09:00] Pilates, uh, movement exercise.

And then the third component is mindful self compassion. So it's sort of this three pronged approach to help people manage their symptoms.

Dr. Linda Bluestein: That's fantastic. So I'm sure people are going to hear this and think, where can I sign up? Is this something that's available yet or?

Emily Rich: Not yet. Yeah. So my plan is that I'm going to package the curriculum.

And my hope is that this could be available internationally. Um, a lot of times what I find is a, there's a lack of providers. We know that there's not enough people treating these conditions. Um, and that's definitely still true in allied health, not just doctors, but therapists, there's not enough therapists.

We also know there's a role for therapists. They can really help with improving function and these practical daily life things, um, especially when the wait lists are so long to get into positions. And so, um, the third piece is that groups help, they help each other, right? It's kind of amazing [00:10:00] how people can help each other.

And so through giving this curriculum to different sites, the hope would be that clinicians aren't intimidated by, I don't, I didn't learn about POTS in school, you know, we didn't, none of us learned about POTS in school. They have this curriculum, they know what to do, um, they can kind of see more patients at once.

You do a group based program, that's an efficient way to deliver care. And then the patients can help each other, they get to meet each other. Often it's the first time they've met someone else with POTS or with EDS, as you can imagine, there's a lot of people with EDS in the group. Yes. And so, so that's the goal.

Um, in the meantime, I'm, I'm hoping to create something online that will be similar that could be an offering for people. Uh, but yeah, that's our, our big picture group based program.

Dr. Linda Bluestein: Fabulous. And so, so this is something that is executed through the physician's office. I guess, I guess I'm maybe not totally understanding that part.

Emily Rich: Yeah. So hopefully it will happen in community centers, which could look different. Right. So absolutely in outpatient therapy [00:11:00] clinics where there's already OTs and PTs, um, it could happen in a physician's office if that's something the physician could bring in therapists or someone to implement. Um, but yeah, it can, hopefully it's in communities.

That's my goal is that it's not limited to these like centers of excellence, which barely exist, but that we're bringing this information to communities. I live in a community of a million people. It's not huge and, um, we've had a lot of demand and a lot of patients been able to go through the program.

So I think it's very realistic to, to take to lots of different size communities.

Dr. Linda Bluestein: I've thought about doing group visits for patients because I agree. I think that's something that they can learn from each other. And a lot of the things that we do don't need to be done in an individual setting. They can be done in a group setting.

So that's more cost effective. It's, it's so beneficial for, like you said, they learn from each other as well as learning from the clinicians. So I think that's really exciting that you have been working on this and they've been having that many groups go through already.

Emily Rich: Yeah, [00:12:00] it's been fantastic. The, I can't, um, I really can't even describe what happens in that environment because it really feels like magic that, you know, all these different pieces come together.

The learning, the exposure to safe movement, um, and the, the psychological piece that can be really hard and nuanced in terms of like, I don't want to go see a therapist. They're going to tell me this is in my head. And hopefully that's not true, but you know, with medical gaslighting and medical trauma, that's understandable.

So we're, we're bringing a lot of different things together. And, um, yeah, it's, it's really helping a lot of people. So it's very exciting.

Dr. Linda Bluestein: And if a clinician wants to utilize this program, say I wanted to start this in my community, what would I have to do in order to do that?

Emily Rich: Reach out to me and hopefully soon I will know.

Um, yeah, we're still, I'm still finalizing everything and, and working on kind of getting, like, Um, trademarks and those kinds of things figured out. But in the meantime, I do have a course online for [00:13:00] therapists that are just learning about, you know, what can I do for these patients? And so that's more of that one on one care.

Um, you can create your own group program, of course, but, um, but yeah, we, we are still in the process of finalizing all of that. But. Um, but yeah, I do have a program online for therapists because there's just so little out there in terms of continuing education on POTS for therapy. Um, it's, it's unfortunate and I think it's getting better, but, uh, there's, there's a lot of need and there's a lot of patients that really need providers to be more educated and to know specifics about treatment for POTS.

Dr. Linda Bluestein: Especially, uh, in these post COVID years, or I don't know, you know, obviously there's all different ways we can describe what's been happening since 2020. Um, but it's, of course, POTS is so much more common than it used to be. And so it's so important that we get people. able to function and do the things that they love to do, um, more efficiently.[00:14:00]

Emily Rich: Yeah. Yeah. The estimate is that the number of people with POTS in the United States, at least, has actually doubled. Um, we're looking at maybe 6 million Americans at this point and yeah, that whole post COVID, right. It's like the, since, since the pandemic hit, um, we're definitely seeing just more autonomic dysfunction, even if it's not POTS, just big picture dysfunction of the autonomic nervous system where people with fatigue and myalgic encephalomyelitis, myelitis, and all of these.

things that we see that are similar to POTS and often come with EDS as well.

Dr. Linda Bluestein: Sure. Sure. And when you were talking about the program and um, that you already have a course online for therapists, are you talking about occupational therapists then?

Emily Rich: So if the course is really intended to be for any kind of allied health professional, um, I have even had a few physicians, nurse practitioners, chiropractors take it as well, but it is, what do we do for lifestyle based approaches for POTS?

So it includes the sleep management, the fatigue management, the autonomic nervous system education. Like how do we teach [00:15:00] patients, um, what's going on in their body? How do you break it down for them? Um, movement and exercise pieces, um, the fluid, the salt, the compression, all of those lifestyle pieces that, um, Um, most physicians just do not have time to go into depth on with patients in terms of the implement implementation.

And so my, my thought is that's where allied health comes in, you know, to really be able to say, I can see you once a week for 45 minutes or whatever it is so that you are following through. You're able to ask questions. We're really implementing this, um, instead of, you know, here's your prescription for fluid, salt, compression exercise.

You know, I'll see you back in three months or whatever. Um, so that's kind of the idea.

Dr. Linda Bluestein: Yeah. Cause a lot of that is very nuanced, right? So you can, I, I put a lot in my initial note with people and it's probably, it's their real, the notes end up being really long and the instructions are really overwhelming.

Um, but yeah, it would be a lot to go into every one of those pieces of the [00:16:00] plan in, in that level of detail that you're able to do with a program like this. So that's, that's great.

Emily Rich: It's too much. It's too much for us to expect that medical providers are going to be able to do. So yeah, we, you know, especially like you have just so many of the co occurring conditions like ADHD or someone who's autistic and how do I implement getting water regularly?

That might be really challenging for different reasons. Um, and so we have to think creatively of how I can remember that, um, you know, just all of the, the nitty gritty and then, you know, you'd have someone with a disordered relationship with food because they've had gastrointestinal issues their whole life.

And now you're telling them to drink the sugary drink or to eat really salty foods, like, What does that look like? Um, it is, it's, it's nuanced. It's, it's not as black and white for, I would say at least half the population, um, because they are complex. They do need more support and more detailed intervention.

Um, even if a cardiologist, for example, has told someone to increase their salt, they come to me and, you know, maybe they're just [00:17:00] salting their foods a little bit more. They don't quite understand how to read labels and what, Sodium versus salt means in milligrams versus grams of salt. And, um, you know, I'm going to drink a Gatorade at once a day.

That's probably enough, right? Well, not exactly. That's only about 200 milligrams of sodium versus something like an element that's going to have a thousand milligrams of sodium. So really getting into this, the specifics and it's kind of amazing how well patients can do, a lot of patients can do with even just fine tuning those very basic strategies.

Um, so it's been really, really fun to, to get to be a part of that.

Dr. Linda Bluestein: And what are some other things that you want POTS patients to know that they, that a lot of them don't know?

Emily Rich: Yeah, I would say just so starting out with like, what does POTS, what do POTS patients know? I hope that they know what I call the big five of non pharmacologic interventions for POTS.

So that is fluid. Not everybody needs more fluid, but making sure that you're getting enough fluid. Um, as well as sodium, as if we are just drowning, um, out [00:18:00] the sodium with a lot of fluid, like, you know, more than a hundred ounces, maybe you're getting 200 ounces of fluid. That's a whole lot. You're going to need a lot of sodium too, so that you can increase your blood volume.

Compression is one that a lot of people have heard of. Um, but what I would say is a lot of POTS patients maybe don't know how effective abdominal binders can be and that they are often more effective than lower body compression compression. So our ideal situation is we have full lower body compression, you know, at least ankle up to waist as well as including the waist and abdominal binder around the waist.

Um, and so that could look like a corset that could be abdominal compression, abdominal binder. If you type in on Amazon, um, you know, those kinds of things. It doesn't really, really matter. It's what's comfortable for you. But knowing that even if you can't tolerate leggings, or you can't tolerate socks, or, you know, the abdominal binder alone is often more effective than wearing [00:19:00] socks, for example, or even wearing leggings.

So, um, Um, so that's the third is compression. The fourth one is exercise or movement. I think everyone's heard of it and everyone's frustrated by it. Um, so I won't go into a lot on that, but you know, we need to be moving our bodies in ways that help our symptoms long term and that don't exacerbate our symptoms short term so much that we're not able to function.

Um, and then the fifth one is elevating the head of your bed. And that is one that a lot of people don't know. Uh, but yeah, raising the head of the bed four to six inches off the ground with bed risers or cinder blocks, something like that. You could also use a full body wedge, but what a lot of people think is I just need to elevate my head or my upper body.

And in reality, you need to elevate, you need to have your whole body at an angle. Um, and so this is sort of tricking the kidneys. There's this strategy so that you lose less. blood volume overnight. So you [00:20:00] maintain more of that blood volume when you wake up in the morning and you're not quite as depleted.

You don't feel as crummy in the morning. So those are the big five. And so hopefully now everyone that's listening knows about those. Those are super important. Um, there's all kinds of other things, you know, that I like to teach people too, but those are really important fives.

Dr. Linda Bluestein: Do you also educate providers and clinicians as well about POTS?

Emily Rich: I do. Yeah, absolutely. So I have the. The providers course on my website, which has been really great. We've had like 150 different providers around the world who've enrolled and are learning and treating, which has just been fantastic. And then on top of that, I started this Instagram account several years ago, um, that has just sort of exploded.

And it was really intended for patients originally to be a place for me to sort of pilot strategies and ideas with patients and get their feedback and learn from them. Um, but also it's been a place for me to educate [00:21:00] providers. And my favorite thing that has happened is that physicians, especially as well as therapists around the world, send their patients to my Instagram.

So I get, I get people coming and commenting and saying, you know, my doctor in Florida sent me to your Instagram account for more information. Um, and I'm learning so much. It's been really helpful. It's great because I'm able to interact with providers, to teach providers, and then providers are also able to use it as a resource for their own patients, which has been really great.

Dr. Linda Bluestein: That is so great because we, so many of us know that, uh, so many clinicians need to know more about these conditions. So we're going to take a quick break and when we come back, I want to dive more into how How you educate providers, what you share with them, how you help them take better care of their patients.

So we'll be right back.

This episode of the Bendy Bodies podcast is brought to you by EDS Guardians, paying it forward in the Ehlers Danlos Syndrome community, patient to patient for the common [00:22:00] good. I am proud to serve on the inaugural board of directors for EDS Guardians, a small charity with a big mission and a big heart.

Now seeking donors, volunteers, and partners. Patient advocacy and support programs available now. Travel grants launching in 2025. Learn more, shop for a cause at their swag store, and join the revolution at edsguardians. org. Okay, Emily, so we're back. Can you share with us, um, how you educate providers, what you share with them?

Uh, we all know that clinicians are busy and it's really hard to learn about these conditions that are so complicated yet affect so many aspects of a person's quality of life.

Emily Rich: Absolutely. And you know, I think I, I understand what it's like to be a busy clinician and mo I pretty much only treat POTS and a DS and then a couple other, you know, complex kinds of patients.

And so it's like, when do I have time to learn this extra stuff? Um, in some ways I'm fortunate that I have these conditions because [00:23:00] it's a lot of, it's intuitive for me. Um, but I've had to do a lot of my own research as well. And so. Um, yeah. What does that look like? Well, first of all, the course that I made is asynchronous.

I presented it first live so that people could tune in during the pandemic and had a whole long, long day. But then after that, I rerecorded it in little snippets at a time. So that way my hope is clinicians can turn it on on their phone, on their drive to work or listen to it on their morning run or whatever it is that they're doing, um, so that it's in the background.

And then I, I provide the PowerPoint slides, I provide resources for, for providers to use. Um, and that way when they are done listening, they can go reference those, those sheets when they're at their computer or wherever they are. Um, so that is, that's one thing is that people can listen to it wherever they are in their day.

Um, the other thing is I include education handouts for providers as well as for patients. Um, and so providers, when they, they take this course, they [00:24:00] automatically have a packet of resources that they can give to their patients. So instead of reinventing the wheel, like this is how much salt you need.

This is how much compression level you need, you know, these things, the provider is able to just print out the sheet, put it in front of their patient and say, okay, now let's individualize this to you. But specifically, I would ideally have you wearing 20 to 30 millimeters of mercury of compression. What does that look like?

You know, what are the brands that might offer that? How do you go about that? Um, but then that provider, you know, they're seeing other complex patients. They don't have to remember a lot of these details. They don't have to create their own handout. Um, so those are some things I, yeah, I definitely teach providers the nitty gritty on like, what do we need to see in compression, you know, patients that have mast cell activation, they're not going to be able to wear just whatever compression necessarily, right?

If they're going to have a reaction to it, um, what are the alternatives for them? Similarly, people with sensory sensitivities, which is at least half of the patients that [00:25:00] I see. What if they don't tolerate really tight compression or what if a certain material doesn't breathe, you know, or they're a teenager in high school and they don't want to wear funny looking socks to school.

Like how do we help them to blend in? So it really get into specifics with that, um, a lot on the autonomic nervous system. You know, hopefully every medical or health care provider has been trained to some degree on autonomics, but honestly, it's, it's not as in depth as any of us would have liked, I think, in terms of treating this population.

So I go through both in depth what a healthcare provider needs to know and understand, and very importantly, how do we simplify this? How do you feel confident enough that you can break it down easily to a patient who doesn't have a degree in health care and they can understand for themselves, Oh, you know, when my hands turn cold or clammy, or when my vision is not able to focus up close, or, you know, um, I'm having trouble with dry eyes or whatever it is, dry mouth in my [00:26:00] digestion is not functioning properly, those are signs that maybe I'm in a more sympathetic or fight state.

Maybe now is a good time for me to use some of the tools to regulate my autonomic nervous system. And how do I take information about why that happened? Was I overstimulated in this environment? Was I exhausted? Was I standing for too long? Right? So it's both the in depth for the clinician and the, how do I now understand this well enough that I can explain it to a lay person so that they're able to use it for their own bodies?

Because Ultimately, self management is the goal. Self management meaning you are empowered, not alone, you're not left alone to do this, but you're empowered with the skills, the knowledge, the tools to know what to do when you have certain symptoms and manage those symptoms.

Dr. Linda Bluestein: Yeah, and so much what we learned in school is about, we did learn about the autonomic nervous system, right?

But at least I went to school, I'm sure a long time before you did, um, you know, but we, but we [00:27:00] also were taught that these things were so rare, right? So I obviously went to school long before COVID. So, um, you know, it's, it's something that's not on so many people's radar. I remember being in an elevator with a cardiologist not that long ago and I said something about parts and he was like, That's so rare.

And I'm like, this is pre COVID, but I was like, really? Because no, it's not, you know, even, even then it wasn't. So um, so that's, I think one of the big barriers right there is just getting, getting clinicians to understand that, um, you know, that these patients are coming in and if you, if you even have just some basic steps that you can start to give them, if you have some handouts and things like that, like you're, you're doing something significant that could really impact their quality of life.

And I wanted to ask in terms of, uh, you know, you mentioned about mast cell activation syndrome and definitely the sensory sensitivities, definitely I see that a lot in my practice. The other thing that I think is so challenging is heat, right? Because so many of us are heat sensitive so, uh, yeah, if we covered ourselves head to toe with [00:28:00] compression, of course there's so many benefits.

It basically It feels good. It helps with proprioception. It, you know, uh, helps with venous return. It helps with, you know, our, uh, joint pain, swelling, you know, maybe some joint stability, but we would be so hot and we might react to the fabric, et cetera. So do you have any tips for people who maybe are thinking, Well, that all sounds great, but

Emily Rich: sounds great in the lab.

Right. And you know, that's what, there was a great study done just a few years ago that showed, um, the level of compression and the degree that it affected the heart rate. So that's, I use that. It's great. We have that study to show people that, yeah, even if you don't have full lower body compression, the abdominal binder alone is the second best thing that you could do for yourself.

It's far better than wearing socks. And so recognizing that, like that's a huge surprise to a lot of people, myself included. I used to think, well, I wouldn't just put an abdominal binder. It's going to push some of the blood down. Um, but that's not what this research [00:29:00] showed. So. So yeah, but real life, like we're not going to cover ourselves head to toe in, in compression, especially if we're going outside.

I live in the literal desert. I live in Arizona, in Southern Arizona, like by the Mexico border. This is not a place that is easy to convince people to wear compression head to toe. So I deal with this all the time. And I think number one is Weighing the cost benefit ratio is the compression making me so hot that I actually feel worse than I do without it.

If so, that's not going to be the right route for you or we need to find different type of compression when that's more breathable. Um, you know, I am fortunate that I live in a place where a lot of providers now will write a script for patients to get compression through insurance and insurance will cover quite a bit, which is really nice.

Um, and the place that orders the compression tends to order very sheer leggings or kind of like stockings and they don't breathe, um, and they don't, are not toll less, [00:30:00] they, there's no way for airflow. So you know, I often tell patients like, get this because it's covered by insurance. Like of course, let's, let's have a pair of those.

But those are not going to be the ones you're going to wear when you're going running errands, when you're going outside, you're going to a doctor's appointment in the summertime. Maybe you just keep those for the rest of the year, that kind of thing, or other days. Um, and the other thing I, I like to point out is that you can still wear compression for part of the day.

So that's especially where something like an abdominal binder, it's a whole lot easier to put on and take off than something like those really tight leggings or even socks. Um, where you're subluxing your thumb, just trying to pull them on, right? So instead, when you're indoors, just wrap this abdominal binder around you or, you know, put on some Velcro, um, socks or leggings that you don't have to pull on and then just take them off when you're going to go outside.

Um, and so using, using compression strategically is another trick that I really like to teach people.

Dr. Linda Bluestein: Yeah, that makes a [00:31:00] lot of sense. I had actually was a family member and they were prescribed the 30 to 40 millimeters of mercury waist high stockings. And I was kind of giving them a hard time that they weren't putting them on.

And they're like, you try putting them on. And yeah, I thought I was going to dislocate every finger in my, in my hands. So I don't

Emily Rich: even, I don't even recommend the 30 to 40. I know that that is the like kind of gold standard. Like that's the best in terms of how tight they are, but the compliance or a patient's ability to put those on every day is so low.

That it's 20 to 30 is usually what I recommend. And then for those with sensory sensitivities, often we just do 15 to 20. And we, we say, you know, this is what it is, but it's something rather than nothing. It's meeting the patient where they are. Um, and, and, and just a tool that I would love, you know, for your, your listeners to have as a hack.

is called a compression donning device. And so there are many versions of this. Donning is just a fancy OT word for putting on and doffing means taking off. [00:32:00] Um, but yeah, it's just a tool there, you know, 15 to 30 and you can pull your sock or legging on it. Um, you pull it down, kind of turn it inside out and then you hold the handles and you pull the sock on and it, or the leggings, it is fantastic.

And you could even. Make larger handles so that your hands are not subluxing and definitely your thumbs aren't having to get into those socks and um, makes a huge difference. So that's something that you might want to play with if you're a person who's experiencing those challenges with your hands.

Dr. Linda Bluestein: And you know how much I love hacks, so I appreciate that.

Emily Rich: Yes, that's Ocean's favorite thing is those lifestyle hacks.

Dr. Linda Bluestein: Yeah. Yeah. Love that. Um, and we'll get to some more hacks or at least a hack at the end, of course, as we always do. Um, let's talk about fatigue because I know that this is such a huge problem. I, I was really shocked when I opened my practice because, you know, of course being, um, an anesthesiologist and my practice being devoted for pain medicine, I knew I would see people with pain, but I [00:33:00] didn't realize that the second biggest complaint would be fatigue.

fatigue. So what do you do? What kind of suggestions and hacks do you have for people that are experiencing fatigue?

Emily Rich: Yeah, that's such a good point. Um, I think fatigue is so under recognized in terms of how it impairs our daily life, you know, and the reasons why we have fatigue are so diverse. So first of all, I like to draw a picture and it's, you know, your energy in the middle.

And then I like to have arrows on the outside that are like, what affects your energy levels? First of all, we know it's not just physical exertion. Of course, that's a piece of it. If I run or do a lot in a day, I'm going to be tired. Um, but you know, what else affects fatigue? Well, cognitive energy is a piece of that too, that your overall energy.

So if I'm studying for an exam or I have a deadline at work, um, that's going to contribute. Additionally, we know that emotional energy, um, takes quite a bit, right? So, and that can be highs and lows. So it's not just, I had a hard [00:34:00] day. I got a bad, bad news, you know, about something. It's also, I'm really excited.

You know, I, like if there's a wedding or a graduation or a family member visiting or you're traveling, those are exhausting too. Um, and so taking those things into account as well as sensory fatigue, um, social fatigue, you know, all of the different ways that our energy manifests. Um, so those are all pieces.

Um, as well as you said, like pain, pain definitely contributes to our overall energy levels and tolerance. Um, and there's so many other things that we can go into, you know, mass cell symptoms are definitely going to contribute. POTS symptoms are going to contribute, you know, decreased circulation. So it's so multifaceted.

So starting with what are all my variables. And then once we lay that all out, we start to sort of tackle it, right? So what's, what are, what's going to get the biggest bang for our buck? Um, you know, maybe drinking more fluid and getting more sodium is [00:35:00] going to help circulation and it's going to give me more cognitive energy.

It's going to get more blood flow to my brain. Um, maybe reclining my body a little bit is going to help again with circulation, taking, um, you know, gravity out of the picture throughout the day for five minutes at a time, putting my legs up on the wall. That could get multiple things. It could also help with pain, um, taking breaks, you know, from your desk, for example, making sure that you're getting up at least once an hour, if not more, um, you know, even if it's for two minutes, changing positions.

So identifying those things that can help multiple variables. Of course, I'm also going to say, you know, pacing yourself. So trying to avoid booming and busting, meaning like, I feel great. I'm having a great day. I need to do all of the things that I haven't been able to do for the last week. I'm going to do them all today because I don't know how I'm going to wake up tomorrow.

But the thing is, I can assure you you're going to wake up tomorrow, not feeling good if you do all those things. And [00:36:00] so pacing yourself, pacing yourself across the week, pacing yourself across the day, taking breaks. I could go on and on about pacing. Um, those are just a few examples. Of course, pain management, like specific things, using tools, um, compensating, asking for help.

Like there's so many aspects of it, but it really is addressing the multiple components that are affecting you as a human and your specific fatigue.

Dr. Linda Bluestein: And sleep is such a big part of that too. So do you have any particular sleep hacks that you want to share?

Emily Rich: Oh, I'd love to. Um, yeah. So for EDS and hypermobility in general, um, you know, obviously pain is a huge factor in terms of sleep and that can be very challenging.

to manage. We know that positioning is not always the most helpful thing, um, as much as we would like for it to be, but things like a mattress and, you know, there's a lot of ideas there. Um, and then maybe even bracing, splinting at night to help maintain appropriate positions and [00:37:00] postures. I think the classic hypermobile posture for sleep is, you know, curled up in the fetal position, neck twisted, arms are collapsed, you know, kind of like hugging yourself, but we know that contributes to pain.

Um, And then from a POTS perspective, there are just so many ideas about what to do for sleep, um, starting with regulating the autonomic nervous system throughout the day, because it's not just I'm calm before I go to bed, but it's what has your nervous system been doing all day long? And so really reinforcing an evening routine at minimum.

Um, that we're really spending several hours in the evening, winding down, um, you know, uh, decreasing screen time, of course, that's what everyone's going to tell you to do, but also conversely, getting sunlight first thing in the morning, helping that circadian rhythm to know, okay, this is morning, and then it's dark at night, you know, lowering the lights in your house at night, trying to decrease that, um, stimulation in the evening.

Uh, also using [00:38:00] things like that are going to distract, um, from your sleep. So, um, helping with white noise or brown noise can be helpful. Um, putting music on in the background so that if you're sleeping at a more surface level, um, which we often see with POTS, if there's a dog next door that barks, or somebody opens a door in your house and it creaks, to go to the bathroom or whatever, that you're going to have some kind of a buffer to keep that from waking you up.

If you're a light sleeper or you wake up throughout the night, people sometimes say they crash at night, they fall asleep really easily. And that's the idea that like their body's been revved up all day, most likely. And then they go into that low hypo arousal. They're, they're just, their body crashes. And so the problem is Are they really in that rest and digest state or did their body just couldn't, couldn't hold on anymore in terms of staying at the level they were at?

And so what can we do to help get into that rest and digest state before sleep? Because otherwise [00:39:00] you might crash and fall asleep right away. But an hour, two hours later, you wake back up, you're, you know, you're having night sweats, you're super alert. Maybe you had a bad dream, you know, or you're not dreaming at all.

So, really getting that autonomic regulation is really important for people with POTS.

Dr. Linda Bluestein: Okay, and we've obviously talked about POTS specifically a lot, but I also want to talk about EDS and HSD, and are there certain types, um, certain assistive tech things that you recommend that people can try for, for those conditions?

Emily Rich: Oh my gosh, there's, there's so much, it's so hard to even know, uh, where to start. Um, but yeah, just in terms of modifying and adapting, you know, assistive tech can, can be as basic as like we consider eyeglasses, assistive tech, right? So if someone has difficulty seeing, we add glasses and now they can see better.

So one great example is building up the handle on something to make it larger. So especially if you're having issues with hand pain or [00:40:00] dislocation, subluxations like your thumb or your hands, fingers. Making something larger actually, A, makes it easier, less energy to hold onto it, um, and it also protects your joints so that they're in that more rounded position instead of hyperextended typically.

So if you try using a pen that's really skinny, one of those like in a doctor's office, for example, usually the cheap pen, um, because they get thrown away. are lost or stolen. Those are going to be a lot harder on your joints than if you use a larger pen. And the same thing holds for trying to screw your faucet on your sink or the shower, turning it on and off.

If you make it larger or if you add a lever to it, it's going to give you more power and make it easier to do than if you're trying to do it really small. Um, same example of like, you know, doing your, uh, laundry is difficult for a lot of people. Pouring the detergent or being able to pour a pitcher from, [00:41:00] you know, some sort of a drink into a glass or pour things out of a pot, right, that subluxes your wrist or your thumb.

So, um, lots of strategies that you can use there. One is definitely using a smaller container. Um, that's what I do for, for laundry, for example, using more concentrated detergent in a smaller container. Or pouring, having someone else pour the drinks into something smaller using a spout kind where you can push a button.

There's things you can put into drinks to do that. Pots and pans, you know, if you can use two hands, of course, and then trying to use potholders or something and hold the bottom of the pot instead of trying to rotate, you know, your wrist in that motion. Um, those are some ideas. And so those might be kind of like simple and are those really assistive tech, but we do consider those kinds of devices to be helpful.

Um, I mentioned the compression donning device for subluxing fingers. Um, and then also in the shower, for example, instead of having to bend down [00:42:00] or to lift your leg, you know, for, for shaving, for example, you can use a long handled razor. Um, so it's a longer handle on it. And there are ankle, uh, or foot rests that you can suction cup in your shower onto the wall.

You can prop your leg pretty low, um, instead of kicking it up and, you know, your, your hip going out, those kinds of things. Um, long handled scrub brushes, you can get your hair if you're having hand pain trying to scrub your hair, um, those kinds of tools and, and strategies and modifications. Of course, sitting down in the shower, anyone who knows or follows me knows that's one of my favorite hacks is to sit down, cutting, chopping things at the sink, you know, washing dishes, sitting at the stove.

Um, yeah, those are just a variety of, of things that I love to, to show, um, the hypermobile patients that I work with.

Dr. Linda Bluestein: Okay. Now I'm going to ask you a personal question, a selfish personal question. So, uh, I have arthritis in this and, uh, in my index finger and [00:43:00] it's, it's, it's one of my bigger problems that at times, um, and I had a ring splint, silver ring splint, and I just never wore it.

And now I'm like, Oh, I wish I had worn it to maybe try it. Anyway, of course, a lot of those things that you just mentioned will help with that. And I do already have a lot of the, you know, built up things. Is there anything else that you can do for, you know, a smaller finger joint like that?

Emily Rich: Yeah. Oh man.

Those, those finger joints can be so tricky. Um, I would say that So ring splints aren't out of the question now still, um, especially if you see any, um, subluxation, even like side to side, um, so that can happen too. Things can slip in different ways. So paying attention to that, making sure that it's not, you know, quote unquote, just arthritis, um, that it's not still contributing.

Um, wearing splints at night can especially be helpful. So there are splints that help to decrease your fingers from drifting. They're called Ulnar Drift Splints, um, drifting towards your fingers. Those can be important. Um, there are buddy splints where [00:44:00] there's like, um, you could connect one finger to another finger so that it kind of keeps it more in line.

Um, but honestly, I think pain management, you know, is just huge for when you're at that level, if it is arthritic. And so using things like, um, movement, you know, we say motion is lotion. So lubricating the joint, making it not get as stiff. Um, in the morning, you might try using a paraffin bath, which is like when you go get a manicure, you get the fancy upgrade of paraffin, but you can do it at home with a 30 device on Amazon and you buy bricks of paraffin wax, and that feels amazing, um, contrast baths are alternating cold and warm, so putting your hand in an ice cold bath and then putting it into warmth and then cold warmth.

It helps to get the blood pumping through that joint, and that can really help with pain management. So, so again, preventing any further, um, challenges or further issues with the joint if you feel like it's continuing to progress. If you feel like it's [00:45:00] progressed to where it's, it's just going to stay at this point, then we really look at pain

Dr. Linda Bluestein: management.

I appreciate that. It's definitely unstable still. So, uh, so thank you. And I know a lot of people deal with finger pain, so that's, so that's great. Last question before we jump into the hypermobility hack, um, do you have any favorite apps or devices for tracking symptoms?

Emily Rich: You know, um, there are so many new apps every day.

Um, and so I'm not always as up to date as I probably could be, but I would say the most recent one that I have been playing with, and I think is helpful, is the Visible app. Um, it's definitely all over social media. So a lot of folks have probably heard of it. Yep. I've seen it. Yeah. And they have a free version.

Um, and I think it's got some good things. You know, I, I like heart rate variability monitoring. I think it can be helpful information in terms of like physiologic changes in the body. And so I used to recommend Juva Health app, which is really good for migraines and it's free. Um, and the Welltory app, which is a paid subscription.[00:46:00]

Um, they both use the camera on your phone to measure heart rate variability through your finger. And, you know, the technology, of course it could be better, but I think it's decent considering everyone has a phone around and you can check your heart rate variability. So the Visible app actually has incorporated that feature into that app now, which is great to have sort of a one app that does lots of different things.

So I like that one. I also like Paceit. Um, which is good for pacing. Of course, it's created more for like ME CFS, um, but it can be helpful for pacing and recognizing energy exertion in all those different areas, not just physical exertion and you can color code and you can even do that without an app, but recognizing, you know, how do I spread out the types of energy that I'm using?

So I'm not just using all my physical energy one day, but I'm alternating with some cognitive and some, you know, sensory and doing different types of things. There's also, um, for, for kids, I know originally someone had asked about an app for teens and there is, um, [00:47:00] the web map that's from Seattle Children's and it's really intended for pain management, um, but it has a lot of different relaxation skills and ideas for pacing and energy and, um, emotion regulation and then some series of, um, pain neuroscience education.

So, those can be helpful, um, I think, you know, sometimes. Um, for teens, it can be really hard to reach that population with the right type of, of intervention. But, uh, that's one that I like, so, you

Dr. Linda Bluestein: know. Yeah. Awesome. That's one that I recommend as well. And I've seen the visible one on social media, but I, I hadn't really played around with it yet.

So. Okay. Very good. So, uh, we've gotten to the hypermobility hack portion of this episode. And so I would love to hear what your favorite or at least a favorite hypermobility hack is.

Emily Rich: Yeah, I, so my biggest, um, challenge I think that I see and I continue to experience myself is often proprioception. [00:48:00] Um, so proprioception is, where is my body in space?

If I close my eyes, I can touch my body. my nose, or like the fact that you can feed yourself without having to look where your mouth is. So that is often decreased in people who are hypermobile. And so what do we do about it? People ask me all the time. I run into things, I bruise easily, um, and it doesn't help that I am clumsy, you know, quote unquote clumsy.

Well, that has to do with proprioception. So in terms of a hack, my hack, my best hack is how to get proprioceptive input all throughout the day. So rather than it being another exercise, right? It's like, Oh, I already have so many exercises and I can't even do my daily life things. Uh, let alone these exercises.

How do I get proprioception in, in everyday activities? And so when we talk about proprioception, we talk about heavy work, about getting input into the joints. So lifting, pushing, pulling, those are ways to get input. And you want to do that [00:49:00] all day long, all throughout your body. So we need input into our feet, into our, that can go into our knees and into our hips, right?

When we're striking the ground, if we're walking, we're getting feedback into our lower body. Um, if we are sitting in our car, I, one of my favorites is to press on the steering wheel. And you're going to get proprioceptive input into your elbow, hand, wrist, shoulder, um, and sometimes in your trunk a little, and then you can pull on the steering wheel so the steering wheel stays still.

You're just doing isometric contractions against it. You can press into the sides. You can press with your hands in the middle and press out, um, up and down. So you get, I think there's about six different planes of motion that you can get in while you're driving. You have your stoplight or before you get out of the car when you get to your destination.

Um, I also like, you know, when you're brushing your teeth, if you stand on one leg, you're getting some more of that balance feedback, balance input, and so instead of leaning against a wall, um, which we all love to do, right, hanging on those joints. of trying to get more feedback. So [00:50:00] maybe it's walking, like you have bubble gum stuck to the bottom of your feet as you're, you're walking so that you're really getting feedback with a bare foot into the ground with each step.

Um, those are just some basic ways that I get proprioceptive input all throughout the day and it helps decrease injuries. helps increase my cognitive abilities, like decrease fatigue. There's so many ways that we think proprioception can help. And so those are some strategies there.

Dr. Linda Bluestein: Excellent. And I, and I love that because yeah, I feel like sometimes, sometimes when I go in for therapy, I'll be like, uh, tell me which of these exercises to prioritize because it's really hard to fit all of them in.

So yeah. So finding ways to do it throughout the day, I think is really smart.

Emily Rich: Yep. Just put it in your routine and you don't even have to think about it.

Dr. Linda Bluestein: Yep. Fabulous. Well, you have been listening to the Vendee Bodies with the Hypermobility MD podcast. Our guest today was Emily Rich, occupational therapist, and Emily, it has been so great chatting with you.

So before [00:51:00] we go, can you tell us what you're up to in terms of projects, research, anything like that? Absolutely.

Emily Rich: I'd love to. Yeah. So, um, this weekend I'm headed to, well, by the time this airs, it'll have passed, but the Dysautonomia International Conference. So I'm excited for that. Um, and the EDS conference is this summer as well.

Um, and so I am again, wrapping up my dissertation work and then my hope is to launch a patient program that will be online, um, similar to my POTS providers course, but a different format for patients. to be able to learn more about managing their symptoms and understanding their bodies better. Um, and so that is sort of the next big project on the radar.

You can sign up for my email list on my website, which is, um, otemily. com. And that's where you can also find the providers, um, providers course. And then anyone who's looking for a provider near them, because obviously there's [00:52:00] just nothing like having your own personal, um, you know, go to therapist. I have a list of my website.

under clinicians and providers list. And so there are allied health professionals all around the world, um, and definitely in the United States, but beyond that specialize in seeing people with POTS and also with EDS. And so that's a great resource for people to find someone near them. And then of course, follow me on Instagram, which is where I am more than anywhere else.

It's just the easiest to keep up with. Um, So that's Emily Rich O. T. Not Emily Richot. A lot of people think my name is, but it's just Emily Rich O. T. and I'll post updates and things there and have lots of free content and education. I

Dr. Linda Bluestein: have to confess, I thought that was your last name. So when I was looking at the notes for this episode, I was like, Oh, okay.

So you, you learn all kinds of interesting things. Yeah. It's You're in good

Emily Rich: company. Yeah. A lot of people.

Dr. Linda Bluestein: It's a great, it's a great handle though, you know, to, to help us remember what, you know, [00:53:00] obviously I use hypermobility MD as a way of, you know, designating what it is that we do. So I think that's really fabulous.

So thank you so much, Emily, for taking the time to chat with me today. This is such a, an informative episode and I know people are really going to enjoy learning from you. Thank you so much. It was so great to be here.

Thank you so much for listening to this week's episode of the Bendy Bodies with a Hypermobility MD podcast. You can really help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex conditions. You can find me, Dr.

Linda Bluestein, on Instagram, Facebook, X, and LinkedIn at hypermobilitymd. You can find human content, my producing team, at humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at bendybodiespodcast. To learn more about the Bendy Bodies Program Disclaimer and Ethics [00:54:00] Policy, Submission Verification and Licensing Terms, and HIPAA Release Terms, or to reach out with any questions, please visit bendybodiespodcast.

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