Physical Therapy for EDS: Why It Fails and How to Make It Work

[01:06] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained physician dedicated to helping you navigate Ehlers-Danlos syndromes, joint hypermobility, and complex chronic illness. Today I'm joined by Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorder Center, which is proudly partnering with Bendy Bodies. Our guest today is Dr. Morgan Groover. Dr. Groover is a physical therapist who is specialized in EDS. This is such an important conversation because although we have had physical therapy conversations on numerous occasions, today we're going to be talking specifically about how to find the right load that will help strengthen your body and how to individualize your physical therapy care.
[01:51] As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:03] Well, I'm so excited to be back with Dr. Dacre Knight, and today we're going to be talking with Dr. Morgan Groover. So great to see you today.

[02:13] Dr. Morgan Groover: It's nice to see you, and it's nice to be here. I'm really appreciative of Dr. Knight for inviting me here.

[02:19] Dr. Linda Bluestein: Super excited. And Dr. Knight, of course, great to see you today as well.

[02:24] Dacre Knight: Yes, my pleasure.

[02:25] Dr. Linda Bluestein: Thank you. I want to start out by talking about some of the messages that we sometimes send to our patients inadvertently. For example, sometimes people with hypermobility or connective tissue disorders are told what not to do. What do you think is the problem with that approach?

[02:41] Dr. Morgan Groover: Well, it's hard because you're giving them a list of things that they can't do or shouldn't do without necessarily giving them the things that they can. So it's like, okay, I'm hearing all these things that I can't do and I'm trying to make sense of it, but then it almost feels like, okay, I'm not really sure where to go from there. So it can leave people feeling more confused than when they walked into that encounter. It can also leave them feeling more fragile too, which in this patient population, we don't really need to be adding any more of that. To add that fragile mindset on top of tissue that is inherently fragile can just leave people feeling really scared to move. And it feels like sometimes they can't trust their own body. So I feel like it's really important to be very intentional about the language that we use when we're talking to patients.

[03:30] Dr. Linda Bluestein: Yeah, that fragility narrative can be really tricky. One of my patients who I've seen for many, many years and know very well has said one of the best things I ever did for her — not all the prescriptions, but that I told her, "You're stronger than you think you are." And she then started to try to do more, which of course our tissues respond to load, right? Which we're going to talk about in a few minutes. So treating our bodies as more fragile than we need to sounds like something we should try to avoid.

[04:00] Dr. Morgan Groover: Absolutely. Because that patient then just further exacerbates that cycle of fear of movement, tissues being deconditioned, and then trying to load from there just becomes harder and harder. And trying to figure out where that starting point is is really important.

[04:17] Dr. Linda Bluestein: I know you mentioned — we had a little bit of communication via email before this meeting — you mentioned a gap between not overdoing it, but also the risk of underloading or mismatching load. Can you explain more what you mean by that and also what you see clinically?

[04:34] Dr. Morgan Groover: Yeah. So typically with my practice the way that it is now, I've switched more into mobile physical therapy. So I tend to see patients at their houses or at the gyms. It's a little bit different than in a traditional clinic setting. I'm now getting patients coming to me in two different camps: either the more athletic type, where traditional physical therapy may not be challenging them enough to meet the tissue demand of the activities they want to be doing — if they want to be running, if they want to be lifting, and they go to a clinic and the heaviest dumbbell is 10 pounds, then that's not ever going to meet the proper dosage for them — and then on the flip side, the patients that I tend to see in their homes who are a little bit more homebound, lower activity, and just getting to a clinic is a struggle for them.
[05:25] So the physical therapist really has to work with them to figure out that appropriate starting point. But we really want to be able to challenge them, because the tissues aren't going to change if we never figure out how to challenge them just enough to make that appropriate change. If they're consistently doing 3 sets of 10 generic exercise prescription — a bridge, for example — how are they ever going to be able to lift their kid up off the floor and put them in a car seat? Something more functional. So we have to make sure it's really about individualization. You can talk about two sides of the coin, but it's really a spectrum. You have to figure out where that patient is who's sitting in front of you. And that changes day to day. It changes minute to minute sometimes. So it's really ongoing.

[06:08] Dr. Linda Bluestein: And I think so many people have tried physical therapy and they think, oh, I was injured doing physical therapy, or it doesn't work for me. I know Dr. Knight and I have talked about this — we've both had people say this. And it's hard because there's the fear, there's the question of how careful do I need to be? But then if they go to a physical therapist who doesn't understand these things, sometimes they can be given prescriptions that are too difficult for them, or home exercise programs that are too difficult for them. So what do you say to those patients?

[06:44] Dr. Morgan Groover: Yeah. And I feel like we talk about this part a lot. This is kind of the messaging that we see online most of the time. I get a lot of patients with this. I even got a call from a new patient yesterday who was saying this. He said, "Yeah, I've tried physical therapy before and it didn't work." And every time I hear that sentence, it breaks my heart a little bit, because I really enjoy what I do and I feel like there are really positive changes that can be made. So when I hear that someone had a bad experience, I'm automatically asking more questions about what that experience looked like — both how the patient perceived that interpersonal interaction between them and the physical therapist. Was it a true partnership? Did you feel comfortable telling them, "Hey, this exercise is too challenging," or "I feel pinching in my hip when I do this exercise"? Was it an open communication situation? Did you try to voice those things and they weren't received well, or were no adaptations made?
[07:42] What were the exercises that you did? How did those make your body feel? Did you feel like you had any carryover to functional things throughout your life? It's fine if you're progressing on a certain exercise and feeling like you're making gains, but if you can't get any functional carryover into your daily life, then are they even worth it? So it's having that conversation really early on, and then being able to have that conversation with every single patient encounter after that.
[08:15] That's why I think physical therapy is such a cool field. Of course I'm a little bit biased, but that's why I went into it — we have more time per session and over the length of the plan of care to actually get to know these patients and figure out what they're actually trying to get back to. And it's easier for me to pick up on those day-to-day changes of, okay, where can I step in and help this patient get to what they want to do?

[08:38] Dr. Linda Bluestein: And I love the emphasis on function, because at the end of the day you could lift all the weight you want, but if you can't carry a bag of groceries — or like you said, if you're a mom with a young child and you need to be doing things with them. So I really appreciate that. And some people are dealing with dizziness, they have difficulty getting out of bed or those kind of things. So people who are already feeling really unpredictable in their bodies — how do you approach that?

[09:09] Dr. Morgan Groover: I feel like that's where that patient interview comes in. It's so important for so many reasons. You need to know the contextual factors of what's going on in that patient's environment, in their system. MCAS and POTS are typically the two things I see most commonly with patients with EDS or even just undiagnosed hypermobility. And so these are things that we have to think about at every patient session — within a session, it might change too.
[09:39] But there are things that we can do in physical therapy. If someone's having a higher systemic symptom day, I always tell patients, don't cancel your appointment just because you're having a POTS flare-up. That's actually a really good time for me to come in and try to help you mitigate those symptoms so you can feel better. My goal is always for you to end the session feeling better than when you started. A lot of times I'm spending more time doing manual therapy, some soft tissue work, some easy joint mobilizations. Thoracic spine and rib cage mobilizations are one of my favorite things to do for POTS treatment anyway. So maybe that's where we spend a little bit of extra time on those higher-symptom days. Overall, just bring that nervous system down and be like, okay, we can still get some work done. I know you didn't think we could when we started the session, but we've brought it down from a high level to something more manageable. We can try to get some loading in and still feel really productive and feel better than when you started.

[10:42] Dacre Knight: Let's say it's a patient's first visit and it's hard to get an assessment at the beginning. As a starting point as a physical therapist, how do you know where to start with a patient or how do you understand what their baseline might be to work from?

[10:59] Dr. Morgan Groover: Yeah, so I ask a ton of questions on the first day and I always give that caveat at the beginning of the session: this is going to be a lot of talking. If I'm ever talking too much, please tell me and we can move on. That's typical for me, but a lot of my patients enjoy that because that's a whole hour of them getting to tell their story. It might be the first time someone has had that time — someone sitting down with them and saying, "No, I actually want to hear every single thing that you're struggling with. What does it look like day to day? I want to know what a bad day looks like. I want to know what a really good day looks like, and what's your average."
[11:35] And also, what are we dealing with today? Because today is the only data point that I'm getting from that person in front of me. So I need that extra information. I have to rely on them to tell me that. And a lot of times they feel really validated in that encounter, just knowing that they are able to express all of that and have someone sit there and try to piece together the puzzle.
[11:58] So back to your question of how do you even know where to start — usually the patient tells me. They might not know that they're telling me, but I'm taking everything they're saying and filing it as data points. Their symptoms tend to get flared up doing X, Y, and Z. Okay, maybe we don't start there. Maybe we modify. If they get really dizzy going from sit to stand, we might do mostly lying down or sitting work today. We might do most of the assessments trying to figure out what might be causing that. Is it POTS? Is it some sort of vertigo?
[12:34] And then my favorite question to ask is: what are your goals? Because that automatically tells me what I need to be looking at. If they're having trouble getting up and down the stairs, I'm certainly going to want to watch them go up and down the stairs. Because the world's greatest exercises for anterior knee pain on stairs mean nothing if I don't see how you're actually doing that motion — how you have knee pain going up and down the stairs might be completely different from someone else having knee pain going up and down the stairs.
[13:06] That's one of the other benefits of the mobile model: I get to see patients in their home environment where they're actually having the symptoms and watch that motion break down. I can identify where, okay, this sort of motion might be where you're having a little bit of instability, or I see that the motor control is not quite there for the full range of motion, and that's where you're getting the knee pain. So let's take this motion that you're having trouble with, break it down into smaller components, decrease the depth, practice that little motion in a smaller range that you do have control over, and gradually build it up from there.

[13:44] Dacre Knight: Yeah, that's great. And that's actually what I've told some of my patients who I've referred to you. So beware — you might have another spike of referrals after this episode.
[13:54] That being said, you get all this information, you understand kind of the baseline capacity, and I'm sure there's a little bit of wiggle room in where you start and you tailor that over ongoing visits. What are, in your experience, some of the risks of doing too much — but also doing not enough? What you might call underloading, for patients over follow-up visits and things like that.

[14:26] Dr. Morgan Groover: Yeah. So especially with the hypermobile population, we know that those ligaments are going to be a little bit more lax. You're going to have a little bit less of that passive stability and support at the joints. And so what helps with active stability is the muscles. So if we're chronically underloading these patients, those muscles never have that stimulus — that signal to say, okay, we need to get a little bit more robust so that we can handle this load.
[14:54] I tend to refer to bodies separately from the people that are inside of them. One of my patients calls the body the "meat suit," and I can't get it out of my head now. So if you hear me talk about the body versus the person, that's what's going through my mind. It's all about that connection between you and your body.
[15:15] So we're trying to figure out, can we get this muscle, this whole group — this team, this group project — to all work effectively? And by loading that muscle tissue and the tendons, we need the tendons to be stiff. We talk about stiffness in a bad way sometimes, but tendons actually respond really well to the load you give them. You need a little bit of that stiffness in order to handle the things you're asking the body to do. And so if we're not meeting the demand that this patient goes through throughout their daily life, or if they have certain activities they like to do, those tendons have no reason to adapt. The muscles have no reason to adapt. And so they're just being overwhelmed by the tasks they're trying to do, which can lead to pain and fatigue. It can lead to a lot of things.

[16:03] Dacre Knight: And I can imagine that could be certainly very detrimental. So when you're working with them and trying to circumvent those bad outcomes, what do you do as far as your assessment of capacity and underloading? Are you measuring their intensity of the exercise, or giving them more exercises to raise it up? How do you approach that titration?

[16:06] Dr. Morgan Groover: Yeah, there are a bunch of different factors that you can manipulate when you're trying to make something harder or easier. A typical thing people would think of is the number of repetitions, the amount of weight you're moving, or the strength of the band you're using for an exercise. But there are a lot of other variables you can change.
So if someone says, "I feel like this weight is actually enough to challenge me. I don't think I could handle heavier," something I can change is the tempo of the exercise or the range of motion that you go through. We need to be able to strengthen through a full range of motion. This is a little bit controversial for hypermobile patients — you get the advice to stay out of the end range, that the end range is where bad things happen, we can dislocate. And we have to really work on how we talk about this. Because we need to get strong in those end ranges. End ranges happen. We live life mostly in the mid ranges, but a lot of activities and daily demands involve going into end range motion.
[17:42] So we have to figure out, what is this patient's safe end range that they can handle? And "safe" really just means what the tissues are able to control. How do we gradually build that up? We can slowly increase the range of motion through which they're taking this exercise. We might stay at the same weight or the same rep count for a while, but we're changing all these other variables in the background to just challenge the system a little bit more.
You don't want to change all the variables at once because typically the system gets overwhelmed and you might not know which variable caused it. So it's like an experiment almost. You have to figure out, okay, which independent variable can we manipulate today, and then see how the patient responds both in the session and in the days after. So if I see someone once a week or twice a week, their job is to give me that data of what happened in between the last time I saw them and now, so that we can figure out what to do for this session.

[18:38] Dacre Knight: Got it. It must be satisfying to see that progress over time.

[18:42] Dr. Morgan Groover: It's so cool. Even just earlier this week, I had a patient who actually is someone who introduced me to this podcast. She's the one who called you out for saying there's no joy in physical therapy, Dr. Knight, which is how I ended up here because I then called you out.
She's a 15-year-old girl. She had injured her ankle and then injured her back because of how she was walking on her ankle, and it ended up with her in a wheelchair because she was so afraid to walk on it that she thought she was going to injure it more. I've been seeing her for a couple of months now — I think we started back in December — and just on Monday I was able to get her to do a squat with a 25-pound plate held in front of her chest. I had her doing heel raises with a 25-pound plate overhead, and I'm telling you, I thought she was going to cry. I thought I was going to cry. She was so happy to be doing that level of exercise. She said, "I never thought I was going to get back to doing these things." And these are things that make me so happy.
Of course, I'll be curious to see her next Monday and see how things are going, because it's typical to have flare-ups after we increase the dosage of exercises. But even just that moment of joy can be worth it — she might've been a little sore, might've overdone it a bit, but we adjust. How cool is it that she did it?

[20:14] Dacre Knight: You mentioned that you obviously find your work very enjoyable, and that's great. What I'm curious about — and you touched on it a little bit with that encounter — is setting expectations for patients. We've had previous episodes where we talk about what is the magic pill for problems with EDS and HSD. There is not a magic pill. But there may be some magic in the process of going through these treatments and therapies, and bit by bit we might find some progress that is bringing us joy and satisfaction, both as providers and as patients.
[21:01] Thinking through that — and my clumsy way of getting some guidance in place — if we can find ways to reach some joy in the process of physical therapy rather than just fixating on the end result, that's, I think, the real key. So if you can talk about what you might work toward in order to bring joy to physical therapy for someone where it's not just a rigorous, go-to-the-gym-and-exercise experience that patients are reluctant to do — how can they find joy in that method of treatment?

[21:56] Dr. Morgan Groover: I think you just have to make it meaningful. I think a lot of patients and myself as a provider can find a lot of joy in making it meaningful. If I go to physical therapy or any encounter and I'm just told what to do and I don't really care about those things, I'm certainly not going to go do a home exercise program if I don't understand how it's contributing to my overall wellbeing. And if I don't like it.
[22:25] I think your home exercise program is a way to figure out what movement feels good to you, what you enjoy, because the best home exercise is the one that you're going to do. A lot of people ask me, what are the best exercises for someone who's hypermobile? Or what should I be doing? And it's like, well, what do you like to do? That's always my first question. What do you like to do? What do you want to be doing? If I could snap my fingers — that magic pill you're talking about — if I could just snap my fingers and fix everything, what would you be doing?
[22:53] And a lot of these patients have a hard time answering that question, especially in the chronic illness community. It's hard to have those big dreams when what you thought your life was going to look like is now different. We have to take that reality into account. But a lot of my job is just helping patients figure out, okay, what could this look like? What could my goals be? Because sometimes that is a hard question. Some of my sessions are just sitting there and saying, okay, what did you used to like to do? What short-term goal can we set and then reevaluate? Because long-term goals are scary for people sometimes. It's hard to think big. So helping them have that conversation of what do we want to be working on — and that's how I set my plan. Because it has to be meaningful or else you're not going to do it. And consistency is the only way that we can make change.

[23:52] Dacre Knight: So let it be known for all of our listeners — we've got it on record now. Morgan Groover has said you can find joy in physical therapy. Absolutely something for everyone to look forward to.

[24:04] Dr. Linda Bluestein: As somebody who has been in and out of physical therapy, mostly in, since I was a teenager — and I'm obviously not a teenager or even close to it anymore — I do agree, and I find joy in physical therapy also. But I definitely have gone through periods of my life where movement and exercise were things I didn't look forward to and didn't enjoy as much. And then other times where I did.
[24:29] So what you're saying about meaning makes a lot of sense. If we want to be able to move, then we have to move. We can't kind of pick and choose and suddenly think that we're going to be able to do these incredible things if we're not moving on a regular basis. I've seen studies about how people view exercise and movement being very impactful for how much they actually do it. If you think of it as a negative thing — "ugh, I have to go exercise" — versus a lot of people who say, "I get to exercise." I think that makes a big difference.

[25:09] Dr. Morgan Groover: It's a little bit of that self-fulfilling prophecy. If I think negatively about this, my motivation is out the window. I'm not going to go do it. And so you have to find those little moments of, okay, I actually really like doing this. It might not be the most research-evidence-based movement prescription, but I enjoy doing it. So I'm going to go do it, and that's better than doing nothing.

[25:32] Dr. Linda Bluestein: And I wanted to point out, following up on — first of all, I love the "meat suit." That's hilarious. And I think sometimes we do get too overly attached to our bodies. So being able to view that separately and try to see it objectively — oh, what do I need to work on — I think that's really good.
[25:56] But I also wanted to circle back to when you were talking about sore muscles. I see often with my colleagues — and I don't know with Dr. Knight how often he does or doesn't do this, but a lot of them will prescribe muscle relaxants, and they'll be very heavy on muscle relaxants for muscle pain. It's my understanding that a sore muscle is very likely a weak muscle, and that the underlying problem might actually be a different muscle or a different neuromuscular pattern. Can you comment on that in terms of painful muscles and what the significance of that is, and the approach that we should be taking?

[26:35] Dr. Morgan Groover: Yeah. So typically I see soreness — or really any type of pain — as a signal. The body's just saying, hey, something's going on. It doesn't necessarily mean something's broken or wrong. It just means something's happening. It's your body's way of alerting you: I think something is not quite right. I'm not happy with how things are. And it's trying to get you to change something.
[27:00] Trying to figure out how to interpret that signal is really important. And it's very individualized. If you're a really heavy powerlifter, you're going to expect a certain level of soreness every time you go up in weight, and they almost feed on that — oh yeah, I had such a tough workout yesterday, I got the burn, I'm sore. But then someone who's not used to lifting that load suddenly starts to move and they feel that muscle soreness, maybe for the first time, and they think, oh my gosh, that exercise hurt me. And that's where I'm asking way more questions. I'll give them some pain descriptors or sensory descriptors and have them tell me what fits best. If they can't come up with it on their own, I'll make it multiple choice: is it burning? Is it sore? Is it sharp and shooting? Is it dull and achy? Most people will connect onto one and say, yeah, that's the closest to what I can describe.
[28:05] Based on that information is how we can change the exercise or modify certain factors to make it easier, more challenging, or just different altogether.
[28:16] So back to the muscle relaxers — the muscle being tight or in that hypertonic state is not always a bad thing. Being able to take that as data and saying, okay, maybe the interventions that we're doing right now are not quite right. Maybe they're not at the right dose, or maybe we need to do some manual therapy techniques to get this tissue moving more appropriately so that when we load it, it can actually have the chance to adapt.
[28:43] When you have something like muscle relaxers, it just makes the data a little bit more confusing to interpret. It's not necessarily a bad thing; it's just something to keep in mind. If this patient's on muscle relaxers, they might not have that feedback as readily available because they're not getting that input from the muscles.

[29:07] Dr. Linda Bluestein: And sometimes I think people feel like the pain is better because of the sedating effect, but it's not because of a direct effect on the muscle itself or a necessarily beneficial effect. It's more of a bandaid than actually getting to the root cause. And I really think this part is so important — going back to the physical therapist and talking to them. Because a lot of people who have said physical therapy doesn't work also didn't go back to the physical therapist and explain their experience. You might say, "Well, that's what you're supposed to feel," or you might say, "Okay, now that you've told me that, I'm going to modify this exercise." But if you don't go back, then the physical therapist doesn't have the opportunity to do any of that.

[29:58] Dr. Morgan Groover: Right. And that's why I said it's so important to treat it like a partnership. If you don't feel like you have that sort of relationship with your physical therapist, it's really important to evaluate that, because for hypermobile patients, physical therapy is almost a lifetime thing.
[30:16] I tend to tell people it's episodic — you're not going to be seeing me every week for the rest of your life. We have ways that we can get through and manage certain things, and then take a little bit of a break. You do the work on your own, and if something flares up or you get a new injury, that's when we start coming back and seeing each other more regularly until we fine-tune it and get you back on your own.
[30:40] As much as I love my patients, I don't want to see them every week. I want them to go out and do the things that they like to do. And so having that conversation — this has to be an ongoing partnership. If you're just not getting the right vibe, if your physical therapist doesn't really listen when you tell them you're feeling certain things, they're not able to adapt on the fly, it feels like they have a structured list of exercises they have to get through today, or you're in a clinic where you're not even working with the physical therapist for your exercises but with a tech who has been given a list of exercises and is just running right through it without even looking at what the patient's doing — that's not very good skilled one-on-one care. For some patients, that works just fine and that's what they need. But if you're feeling like you're not getting enough out of that interaction, it might be time to find another physical therapist and find the right fit.

[31:37] Dr. Linda Bluestein: Yeah, that's fantastic. That's great information.
[32:24] We are going to take a quick break, and when we come back, I want to ask you a question that's not even related to anything that I shared with you ahead of time, but I think it's a really important point. You just said something about skilled care, and I think a lot of people nowadays don't understand the difference in skill sets of different clinicians — a physical therapist versus an occupational therapist versus a Gyrotonics instructor, a Pilates instructor, or an athletic trainer. I have so many patients who go to one of those people, and those people are great — I'm not trying to disparage any of them. But at the same time, I think it's important to understand what you're going to get from working with different people. So we're going to take a quick break, and when we come back, we are going to talk about that. We'll be right back.
[32:30] Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe, and comment on YouTube and follow, rate, and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much, and enjoy the rest of the episode.
[34:03] Okay. Very excited to be back with Dr. Dacre Knight and Morgan Groover. So I mentioned before the break — I feel like this is such an important conversation to have about skill sets and where people can add value. A lot of people do find benefit from working with a Pilates instructor, a Gyrotonics instructor, an athletic trainer — all of these people have their own set of training and they can offer different things to people who are hypermobile or have connective tissue disorders. But I want people to understand that physical therapist training is going to be different, and it's so much more medically focused. So can you explain where you think there might be some confusion and what do you think people should know about those differences?

[34:50] Dr. Morgan Groover: I think it's important to state that there is someone out there for everyone. You can't be everything for everyone, but there is always someone for someone. Finding the right fit for what you need at that moment in time is really important.
[35:10] Maybe you've done really well with physical therapy and you've gone through that more medical route and now you're more independent, but you're not quite ready to go back into independent exercise. You say, oh, I really like going to Pilates, I like doing reformer work, maybe I'll go find a Pilates instructor who has a lot of experience working with hypermobile people. Great. Have fun. Let me know how it goes — maybe I'll go to a class with you. Or Gyrotonics — people are really getting into that now, and if it's working for you and your body is enjoying that movement and you're able to handle it and feel really good doing it, by all means, please go.
[35:52] But I think where people get tripped up is on the injury and pain side of things. If you're going to an athletic trainer, if you're going to a chiropractor — you can name any profession here, just fill in the blank — and they say, "Based on what I've seen in other people, I think this is going on, so this is what we're going to do," without any sort of assessment or evaluation, then you have to ask: did that work for you? If it did, great — that person might know more than their baseline training would suggest. But if not, come see a physical therapist, where we can actually diagnose what's going on musculoskeletally.
[36:58] And then if I find that I'm at the limit of my scope of practice, I always have a very thorough list of referring providers. I'll say, "I don't know what's going on. Go see this person because I know they're going to do a really good job assessing you." I've fallen into that quarterback role a little bit with my patients. They'll say, "I'm having this GI thing going on," and first through my pelvic floor lens I'm asking pelvic health questions to see if it falls within the scope of pelvic floor physical therapy. And if not, I'm thinking, hmm, these bowel complaints along with your history of really bad periods and maybe some infertility point more towards something like endometriosis. I can't diagnose that, but I have a list of three people in the area you can go see.
[37:59] Directing care that way — whether that's more on the medical side or more on the recreational side — it's good to know where to send your patients so that they don't just get lost out there trying to figure it out on their own.

[38:17] Dr. Linda Bluestein: Yeah. And it can be really tricky if they've had a negative experience with a physical therapist or some other type of provider or clinician. A person can end up, like we talked about at the very beginning, really turned off and throw out the baby with the bathwater. And that's what we're really trying to tell people today — number one, you can absolutely have joy in physical therapy. I know for sure that for me it has been tremendously beneficial.
[38:47] It's kind of like dating where you might have to try more than one person before you find the right fit. And I also know that there are a number of clinicians who will unintentionally reinforce fear avoidance cycles. What would you like to say to the clinicians who are listening right now regarding that?

[39:02] Dr. Morgan Groover: That is so important, because I feel like I even have to catch myself sometimes. I can usually control my words pretty well, but my face is another story. And so I feel like that's going to resonate with a lot of clinicians too.
[39:23] When you're going through medical education, EDS in the textbook was that picture of that guy pulling his neck skin all the way out. That has perpetuated throughout the years. So when a patient comes in to physical therapy and you see, "Oh, you have EDS — can you do the party tricks?" Whoa. Maybe we don't do that. Maybe we don't start there as our evaluation, because then it almost turns into a sideshow. Don't make it weird. Just assess the patient in front of you and what they're actually having trouble with.
[40:03] So A, don't make it weird. B, figure out what your face is doing. If a patient is doing something and they have excessive knee valgus and you know that's contributing to their knee pain because of the instability, just try to rein in your face a little bit. And don't say, "Oh my gosh, your patella is so unstable."
[40:24] Words like unstable, dislocation, weak, instability — we have to be very careful and intentional about how we use them. Yes, we should be educating on instability, on dislocations, subluxations, what to look for, but using those words very intentionally — not just, "Oh, your hip's out of place." That patient's now thinking, oh my gosh, my hip is not in the socket. I'm going to get hurt. It just raises that threat level up to here. And in someone whose nervous system is already up to here, adding more fuel to the fire — what is that going to do?
[41:05] We need to educate more appropriately. For example: "You have a little bit more joint play in this hip right here. I'm taking you through this range of motion and I'm just feeling that joint move a little bit more than I would want it to. And that's probably contributing to some of the knee symptoms that you get, because if the muscles are having a little bit of a hard time supporting that joint" — and I love using the word "supported" — "we need to get those muscles working so that it can help support the group project of the leg moving when you're walking and going up and down stairs."
[41:46] Using analogies, using words like "support," talking about what you can do to build it up versus going through a list of what's "wrong" with the patient — that's a really weird place to start an encounter, and I don't feel good leaving that encounter if I'm the patient. So I try really hard to focus on, here's what we can do and here's what you can do. Because yes, your words do matter. There have been studies done on that. So be more intentional.

[42:24] Dacre Knight: Morgan, I want to pick up on that too. That's such a strong point. I know there's a counterargument to what we do in advocating for EDS and HSD and bringing awareness to it — the concern that we're overmedicalizing patients by throwing these diagnoses out there. There was a Wall Street Journal article not long ago by Dr. O'Sullivan who made these points, touching on what you're describing too: if we're giving these diagnostic labels haphazardly without giving patients instruction, then maybe it just develops more fear in them. They get fear of movement. They think they're going to be unstable, they can't participate in their activities, and it's like the self-fulfilling prophecy we talked about — the fear builds on more fear, then deconditioning sets in and it does make things worse.
[43:18] My counterargument to that counterargument is that the concern is only valid if we're not educating patients and giving them the right avenue for treatment. Everything we're discussing today is viable, it's effective, it's tried and true. This method of treatment is how we get patients better, and that's what we're ultimately here for — to get them back to living and functioning and enjoying their life.
[43:43] I think there is this holdback in some patients where they think, as Dr. Bluestein mentioned, there's this stigma with exercise and they're concerned, oh no, I have to go exercise. But if we do it with guidance, like you've illustrated, it is possible and it is very rewarding.
So — I know this is a roundabout way of getting to my question — what if a patient comes to you and they have joy in a certain type of exercise or a sport? I have patients ask me about this. They're doing dance or cheerleading, or they ask: do I have to stop now that I've got this diagnosis? What's the process you go through with them on that?

[44:30] Dr. Morgan Groover: Oh, it hurts me so much when I hear that, because I get this all the time. "Oh, I read in this book that I should never run if I have EDS." Okay, well, the author of that book has never met you. So maybe don't take very generic advice from a book you picked up. Talk to your healthcare professional directly about what you should and shouldn't be doing.
[44:55] But that's the thing — this messaging gets put online and a patient might get a diagnosis of EDS, or they even just think they have EDS, and they start researching. This is the most well-researched group of patients I've ever met in my life. They're on the keyboard going, what is this? I have to be knowledgeable about it. And they've kind of had to be, because for a long time the medical system just wasn't meeting them where they were. So they have to find that information for themselves. But the problem is when the available information says, "Don't run if you have EDS. Don't lift weights. Your knees will explode." I don't know exactly what it says, but this is the information these patients are getting. And of course they're going to be afraid to move.
[45:38] If I read, "Oh, never run if you have EDS," or "Don't let your knees go over your toes" — I could talk about that last one for an hour. You can put your knees over your toes safely, by the way.

[45:49] Dacre Knight: So you can also still do yoga if you have EDS or HSD, is that right?

[45:55] Dr. Morgan Groover: Yes. You can do yoga. There are ways to do yoga. There are ways to do dance. You typically find hypermobile patients gravitating toward these things because that's what they're good at — their joints can move for days. So finding where we can enter that activity at a better entry point: if you want to do yoga or Pilates, whatever involves more range of motion, we have to make sure you have the stability to handle those ranges. As long as we work up to that, by all means, if you go to a yoga class for an hour and you feel really good afterwards and you don't have a flare-up, please go do your yoga. That has so many benefits.
[46:34] Same with running. I've had a patient who runs marathons and she came to me saying, "My last PT told me I had to stop running because of my knee pain with EDS." And I thought, but that's your whole thing — that's what you love to do. Of course we can find a way to get you to run. It might not look like someone else running. Your programming might be completely different. The strength training program on top of it, to make sure you're ready for that impact, is going to look different than someone without hypermobility. But you're already doing the thing just fine — don't take that away. That stimulus is what your body needs.
[47:13] So the whole shift of finding what patients can do, and giving them safe movement that they can gradually build up over time to build their capacity, is a way healthier mindset than, "Don't do X, Y, and Z" — because then the patient tends to take that and run with it.

[47:33] Dr. Linda Bluestein: Literally.

[47:35] Dr. Morgan Groover: They'll be like, okay, it's not safe to move, so I'm just not going to move. And then things get worse. So yes, it's definitely better to find the right entry point and say, look, these absolutes are all over the internet and all over these books, but life doesn't happen in absolutes. Everything is gray. So we have to figure out what shade of gray we're starting in.

[47:56] Dr. Linda Bluestein: And everyone's so different, right? There are people who want to dance but are getting all kinds of injuries, having all kinds of problems. And it's like, maybe you can keep dancing, but you're going to have to really change what this looks like. You're likely going to keep getting what you've been getting if you keep doing what you've been doing, unless you can really strengthen and make those changes. And then there are other people who are, like you said, managing quite well.
[48:16] And I think one of the challenges on social media is it's very easy for people to think, "Oh, they're just like me." And it's like, there are so many other differences and nuances that a lot of people are just not aware of. I see so many people online giving each other advice — medical people know not to give straight-out advice online because they know things are way too nuanced. But that is something I see a lot and I think it's a huge part of the problem.
[48:49] So I really appreciate that framing of looking at how someone is managing at that point in time. It's kind of like with pregnancy too. I see all the time people asking, "Should I get pregnant? Should I not?" and they'll list the conditions they have. But really, more importantly: how are you doing right now? How are you managing and what have you been doing? Are there other things you could do? And how important is this to you? It's very similar — like with dance or running, how important is that to you? These are all informed consent kinds of things where you really just have to give the person the information and let them decide.
[49:24] Which, speaking of giving them the information and letting them decide — for patients listening right now who are thinking, this all sounds great, but I can't afford to see Morgan, or I'm not in her area, or I'm limited to who I can see through my insurance, or I'm even just lucky to have insurance — how do I get more individualized care within the insurance system? We all know there's a huge problem — insurance will look at your ankle if it's an ankle problem, but they won't look at anything else. What advice do you have for those patients?

[49:59] Dr. Morgan Groover: Yeah, so there is some good free content out there, and I'm trying to put out as much free content as I physically can through blog articles. I think I've written two specifically about EDS now, one about POTS, and one about endometriosis, but I'm always writing down ideas and they'll eventually all turn into blogs.

[50:22] Dacre Knight: They're great, by the way.

[50:23] Dr. Morgan Groover: Thank you. I have a lot of things to say, and I understand that not everyone is fortunate enough to be able to afford individualized care like this. So I want to be able to give that information out — and that's part of why we do this podcast, right? Giving that free information to people who can access it.
[50:47] The EDS Society website has a provider directory where you can sort by your location and find a physical therapist near you who has self-identified as someone who likes treating hypermobility and wants those patients on their caseload. Then you can check if they take your insurance.
Another good resource I've found is local EDS Facebook groups. People will post, "Hey, I had a really good experience at this PT clinic in Falls Church, Virginia — go see so-and-so." And a bunch of people will comment, "Do they take UnitedHealthcare?" Nobody always knows the answer, so you have to do a little bit of digging — go to the clinic's website, go to the health system's website. Most hospital-based clinics take more insurances, so that would be a good place to start.
And just tap into your networks — the Facebook groups, the provider registry. Go to your local physicians like a rheumatologist or cardiologist and see if they have recommendations, because they usually have patients coming back saying, "I went to this PT" or "I went to this doctor." That's how referral lists grow. It's just patients talking about what works for them.

[52:11] Dacre Knight: What do you look at as far as safety goes and safety concerns? You said, yeah, keep running if you're running, or keep dancing if you're dancing, but what are things you might hear from a patient that say, okay, we need to rein it in a little bit and level it off somewhat?

[52:31] Dr. Morgan Groover: Yeah. So Dr. Bluestein actually touched on this a little bit earlier — specifically with dancers who are always getting injured. That's usually my big red flag. If you're doing a physical therapy program, a strengthening program, and you're making some progress, but you're still getting injured doing whatever you love, something about that program needs to change. Some variable needs to change in order to make sure it's actually preparing your body for the task that you're asking it to perform.
[53:01] For dancing, if you're getting a lot of ankle sprains, for example, I like to look at what we're doing in terms of strength and what positions we're strengthening in. Some of these people may be going up on pointe — do any of the exercises challenge the ankle in that range of motion? No? Okay, well, there's somewhere we can start. How do we load that position gradually without you flaring up?
[53:32] If we keep getting injured, we have to change something. We can't just keep doing the same thing. What is it they say — the definition of insanity is doing the same thing over and over again expecting a different result? And another phrase I like to use is: nothing changes if nothing changes. We have to adapt that stimulus over time so that your tissue capacity can actually grow with you and support the higher demand.

[53:54] Dacre Knight: And so when you're seeing that progress and those capacities being met — it may be, and certainly this is another saying I'm sure you and your colleagues encounter — the idea of "no pain, no gain." Is there a problem with pain? Tell me about that a little bit.

[54:23] Dr. Linda Bluestein: Oh yeah.

[54:23] Dr. Morgan Groover: That's another one that hurts me a lot. There is pain when I hear "no pain, no gain."
But seriously — pain is just a signal. Pain is your body telling you that something's going on, saying, "Hey, I'm over here, pay attention." It's not saying "stop" or "you need to feel pain in order to make progress." We typically hear that at the extremes — the bodybuilders who say, "I've got to get the gains. If I don't feel sore afterwards, I didn't work hard enough." And we hear that a lot especially with college athletes who leave college and start trying to figure out how to work out after that. All they've been taught since age 4 when they started their sport is: you have to constantly work harder. Your worth is measured by how much productivity you have. That's another topic for work too, but you have to get out of that mindset.
[55:35] Some muscle soreness is good. Some muscle soreness signals that we gave that tissue enough stimulus to start mechanotransduction — if we want to get super technical, that's the process where cells start to build that scaffolding to increase how much load they can handle. We have to have a little bit of that in order to make progress.
But if you're groaning as you're going up and down the stairs, that is a sign you've overdone it. That's not what we're looking for. If it's more like, "I can feel that we did a little bit of work in my quads with that exercise yesterday. I feel like my tissues are responding to the load. It feels like a good muscle burn. I feel like I worked out, but I can still get through my daily tasks without pain" — that's usually the sweet spot. If you can feel like you did work but it's not impacting you for the next two days and you can still do all your activities, then we've found the right dose.
[56:37] But "no pain, no gain" — I wish we could just scrub that from the internet, or those big posters we used to see in the gyms. That's gotta go.

[56:48] Dacre Knight: And one group of patients I see this conflict in a lot are ballet dancers. I know Dr. Bluestein has experience with this, and my wife did ballet as well — but you're kind of taught to just push through, keep pushing. And it can be to the detriment. So what I'm taking from this is that some stress is good, and there's an expectation that you'll want to have a recovery period, but if you're noticing the recovery period is prolonged or longer than what you might expect, then that's where, okay, there may be some damage being done.
[57:32] And maybe this is what Dr. Bluestein referred to earlier — some patients only do one visit with physical therapy. Do you think it might be because they pushed it, were tired and sore the next day, and then said, "I never want to do that again"?

[57:46] Dr. Morgan Groover: That has to be part of what's going on. Because if I go to a doctor and that encounter didn't go well, I'm certainly not going back to that doctor. And that doctor never gets the feedback of, "Oh, this patient didn't get what they needed out of this encounter. Maybe I need to reflect on what I could do better." It's the same thing with physical therapy.
[58:11] If you have your first encounter with a physical therapist — or even if you go three or four times — and you decide, this is not for me, but you never say anything to the physical therapist, even if you mention it to the receptionist or whoever's taking your call when you cancel your appointment, they might not relay that to the physical therapist either.
So I usually tell patients, this is an ongoing discussion. If at any point you feel like this is not working for you, A, let's try to fix it — let's pivot and figure out a better way to work together. But if we're just not for each other — and again, you're not for everyone — then I will help you find someone else. And I'll take that feedback: okay, we just weren't a good fit. I need to maybe work on X, Y, and Z going forward so that I can have maybe less friction in another encounter. But that conversation is really important for both parties to figure out how to progress from here.

[59:15] Dr. Linda Bluestein: And that reminds me of something you had commented on before we even had this conversation — about shifting the clinician's role from gatekeeper to guide. And I think that's a good way to think about it.

[59:25] Dr. Morgan Groover: It really is. And as Dr. Knight was saying just before this, you have to find the right amount of stress and the right type of stress too. Structured stress is kind of how I describe this. As the guide versus the gatekeeper, I'm trying to put the puzzle together — like that guy in It's Always Sunny in Philadelphia with the red strings everywhere. I'm like, okay, these are where your symptoms are happening, let's change this variable.
[1:00:00] But you have to have that structured stress in the most controlled experiment possible, while also understanding that there are outside contextual factors I don't have control over. Maybe the patient has a really busy work week coming up — I can't do anything about that. But I can try to give that patient some diaphragmatic breathing, some stress reduction tips, some sleep hygiene guidance. All these things I can try to influence on the outside, but that's still part of your body's inputs. That is part of the stress your body has to figure out what to do with.
[1:00:39] So that's another important part of rehab, and that's how it's really important to be a guide. If I know your work week is about to be really stressful and you haven't been sleeping well — how's your nutrition, what other things can we control — maybe we don't progress your exercises as much as I had originally planned this week because we know you're going to have a more stressful week. So that structured stress we're adding on top of the other stress going on — we can figure out how to play with those variables. And it's a lot easier to do that as a guide versus a gatekeeper who just hands you a strict list of things you need to be doing because you have EDS. No — this is a real person in front of you with real life things going on. You have to be able to fluctuate with that, with them.

[1:01:33] Dacre Knight: And it's a real partnership, like you said. At first, very chaotic. And yeah — it's like A Beautiful Mind, right? That movie, with all the equations in the background.

[1:01:36] Dr. Morgan Groover: Mm-hmm. That is how it feels sometimes. And I get a little bit of joy out of that too, where it's like, I can help put this puzzle together alongside this patient instead of just saying, here I am as the clinician, telling you what to do. I really actually flip that and say, you are going to tell me all the information I need. I'm just going to help you figure it out.

[1:02:16] Dr. Linda Bluestein: Yeah. And like you said at the very beginning, that's how you have a real partnership. And I sometimes feel guilty when I'm going to see my physical therapist again and I've been traveling or something and haven't been keeping up on my exercises. But like you said, they're a guide, not a gatekeeper. And she never makes me feel bad. She just says, okay, well, and sometimes she'll even flip it and say, "Actually, it's great — you're still doing well, even though you weren't able to fit in your exercises." And sometimes I don't necessarily have that mindset shift until she reminds me about it.
[1:02:50] I think you know that we end every episode with a hypermobility hack. Do you have a hack for us?

[1:02:56] Dr. Morgan Groover: I think the hack has just got to be: find the joy of movement. You have to find something that you enjoy doing. The example I give all my patients is that every morning when I'm making my coffee, I will be dancing around my kitchen with my dog. I'm playing Mariah Carey or Celine Dion, '90s mom rock or whatever you want to call it, or a boy band. I just put on something that allows me to dance around and move throughout the kitchen and start my day with a little bit of movement. I always feel better after I do that.
[1:03:28] And anytime I'm having a stressful day with work or patient care, I will take a little movement break. That might look different depending on the context — sometimes in my car I think, okay, I really need to re-regulate my nervous system after that. That was a really heightened, emotion-heavy patient encounter, or I just had a difficult phone call. I'll find a way to shake it out or go for a walk. But my favorite one is just a dance break.
[1:04:00] People don't think of that as exercise, and I'm like, no, that's getting your body moving. If I can give you just a little bit of movement throughout the day that you're going to enjoy, then you're way more likely to do it. So that's my hack — just find some movement that you enjoy.

[1:04:17] Dr. Linda Bluestein: I love that. For a while I was really super into Zumba. In fact, I got certified as an instructor, but I had a lot of difficulty teaching the classes because of course you have to memorize all the routines, and I would do a lot of it mentally, but you still have to do it a little bit physically and it was really challenging. So I had to stop teaching. But it was funny — I remember being in Zumba one day and the instructor in the middle of class saying, "Well, you know, it doesn't matter, it's your workout." And I literally went, this is a workout? Like, I had never thought of it as a workout before. I knew that it was exercise, but it was just so much fun that I hadn't framed it that way.
So I love it — doing what you enjoy is going to be so much more likely to be successful, and you're going to find time for it in your schedule, as compared to forcing yourself into something that you hate.
[1:05:14] So, this has been a great conversation, and before you go, can you let us know where we can find you, what projects you're working on, or anything special you want to share with the audience?

[1:05:22] Dr. Morgan Groover: Special projects — always look out for blogs because I write a lot and I have a lot of things to say, and I put them out there. I know I'm working on a little bit of research with Dr. Knight right now and the team there, so that'll be cool, coming out soon.
[1:05:47] Where do you find me? I can link the blogs in the show notes so that you can find my provider profile there as well.

[1:05:57] Dacre Knight: And you're on the EDS Society provider directory. You're listed there.

Dr. Morgan Groover: Yes.

Dr. Linda Bluestein: Yes.

[1:05:58] Dr. Morgan Groover: The EDS Society provider directory — if you search by Northern Virginia, you can find me there. Technically I'm on Instagram, but it's just a little fun project. I'm not putting out a ton of educational content because I am a full-time clinician. It's really just for fun and for connecting with my patients and getting research out in a more digestible way.

[1:06:26] Dr. Linda Bluestein: Okay, fantastic. And we will make sure that we have those links in the show notes. It has been so great to chat with you, Morgan, and of course a pleasure to have you here again, Dr. Knight, as well. I know that we're going to get some really great feedback on this conversation, and I really appreciate you sharing your knowledge with us.
[1:07:19] Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, The Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood.
[1:07:47] And don't forget — full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com.
[1:07:59] You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at hypermobilitymd. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahealth.org. You can find answers to common questions at uvahealth.com/support/eds/FAQ.
[1:08:40] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care.
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