What to Treat First When Everything Is Flaring with Dr. Dacre Knight

[01:07] 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, who is not only an expert in EDS, HSD, POTS, and mast cell disorders, but is also joining me as a recurring co-host. Dr. Knight recently transitioned from the Mayo Clinic and is now the founding medical director of the UVA Ehlers-Danlos Syndrome Center, which is officially partnering with Bendy Bodies. Today we will be talking about what thoughtful systems-based care actually looks like for EDS, HSD, POTS, and MCAS, including how to prioritize treatments, set realistic expectations, and avoid common pitfalls. As always, this podcast is for educational purposes only and it's not a substitute for personalized medical advice. Stick around until the very end for our special hypermobility hacks. Let's get started.
[02:40] Okay, well, I am so excited to be back with Dr. Knight for another great conversation, and this time we're going to be talking about how we treat these conditions: Ehlers-Danlos syndromes, hypermobility spectrum disorders, POTS, or postural orthostatic tachycardia syndrome, and mast cell activation disorders. It's great to see you again. How are you doing today?

[03:01] Dr. Dacre Knight: So glad to be here. Doing great. Excited for this episode.

[03:05] Dr. Linda Bluestein: Wonderful. I know that we both know that these conditions — there's no magic treatment. So trying to chase a magic treatment is not what we're trying to share with people. We're trying to share some ideas that they can try, things that are maybe beyond prescriptions, protocols, and quick fixes. Although in the next episode, we will be talking about our favorite medications to prescribe, our favorite treatments. This episode is going to be more about strategy and sequencing and coming up with a realistic plan, not as much chasing some kind of magic treatment. So that's what we're going to be discussing today. And I'm excited to have this conversation with you because I know we both have treated a lot of patients at this point. And of course, you learn a lot — I learned something really interesting from somebody just yesterday. Every day is different, right?

[03:59] Dr. Dacre Knight: Oh, totally. And I agree. It's hard to find the magic treatment. But I may add a soundbite here and say there is some magic in the process of it. I've seen some real turnarounds from patients, and I'm just amazed by it too. But at least just recognizing the diagnosis and then learning about it and learning how it affects them — the whole process really entails some magic to the process of uncovering things that can be treatments for the patients that really help them get back to living. And that's what we're all here for.

[04:36] Dr. Linda Bluestein: Right, absolutely. I want to cry whenever I hear people say, well, I was told that there was nothing that you could do. That just makes me so sad.

[04:49] Dr. Dacre Knight: Totally. And it may feel like magic to patients when they get somewhere, to be with someone who finally does listen and understand.

[04:57] Dr. Linda Bluestein: That's so true.

[04:59] Dr. Dacre Knight: Far between, but we're trying to limit those bridges and try to be more connected and more available to patients and other providers who want to learn.

[05:09] Dr. Linda Bluestein: Right, and get them connected to the resources that they need sooner, which is of course the point of the UVA EDS Center. So exciting about that.

[05:21] Dr. Dacre Knight: Exactly — early diagnosis and getting children involved and all the rest.

[05:25] Dr. Linda Bluestein: Yep, absolutely. Okay, so let's start with when you first meet a new patient with EDS or HSD. I guess that kind of assumes that they have a diagnosis. So let's say maybe they do, or you suspect — we'll make it more open than that. What are your first priorities? I'm thinking in terms of treatment, but you could feel free to add in about diagnosis as well if you want.

[05:51] Dr. Dacre Knight: Well, that's a great question because we find that one of the big difficulties with making these diagnoses to begin with is that they can come in all different shapes and sizes and varieties and levels of severity. So really the top priority, I'd say, is to get an understanding of where the patients are at that time, in that moment. What is a little bit about their medical history and background? What is more about their understanding of their condition, if they have some understanding? And I'd say likely they do if, like you mentioned, they already have the diagnosis — very likely that they've gone to Google and tried to do a little research on their own, which is totally fine. That's what we all do in any situation these days.
[06:39] But with those things, I want to get a good idea of what are the levels of severity of the condition? What are their major impediments? How functional are they in their daily activities? And so then that can inform us of what level we're starting at. We certainly don't want to jump the gun and prescribe too much too soon. As with any medication or treatment, we always say start low and go slow. So at what starting point is that? That's what we want to be informed about.

[07:11] Dr. Linda Bluestein: Yeah. And I agree. I had a patient just yesterday who, when I was reading through their paperwork and reading about one of the concerns that they had, it didn't feel to me like it was as big of a deal. But then as they were describing it and how it impacts their life, I realized it was a bigger deal. So I think that's an important thing for patients to realize — when you are talking about a particular symptom or a particular problem, it's really, really helpful to us when you can explain how it impacts your life.
[07:40] I was having a problem with my wrist and I had bone grafting surgery a number of years ago. At times I had no pain, but I had difficulty literally opening doors. I would literally wait for someone else to open a heavier door if it wasn't electric. So I think it's an important thing to meet people where they're at and for them to really let us know where they are.

[08:02] Dr. Dacre Knight: For sure. And to just get a whole better understanding of the whole picture. Like you mentioned with your wrist and the impediments it causes during the day — we may be able to understand better what the patient is inclined to do or what they had been doing prior to illness or prior to symptoms, so that we may incorporate other resources or treatments that may be beneficial to them. So not only the standard physical therapy and occupational therapy, but are there dietary issues where we need to involve nutritionists, or are there other health coaching things that we can do, or integrative medicine steps that we can take? We really do want to get that full picture for all of those reasons.

[08:51] Dr. Linda Bluestein: Yeah, definitely. What do you think when you think about symptom relief — you want to be thinking about how to address certain symptoms, but at the same time you want to be focusing on the long-term. How do you balance the short-term and the long-term when you're seeing a patient?

[09:10] Dr. Dacre Knight: Yeah, that's a really good question when it pertains to treatment, because we can bring out the strongest medications and wipe away pain instantaneously, really, if we want. But it's likely just not sustainable over the long term. So we do have to keep that in focus. What are the long-term expectations and what is the trajectory of treatment that we want to keep in the picture?
[09:35] Because we know that these conditions are likely lifelong — not that symptoms have to be, but the conditions that predispose to those symptoms can be. So we want to have treatment tailored to that. And again, getting back to what are their daily activities, what is their job, what are those things that they enjoy doing, hobbies and so forth. That's where we want to find, going back to that adage of starting low and going slow, those treatments that are least invasive and that are least disruptive and have the lowest burden to their daily life.
[10:13] If you have to come in for an injection every day, then what's the point of that? You're not going to be able to get back to work if you're spending all your time driving to and fro. So we have to keep those things in mind. Are these going to be oral medications or other treatments and therapies that they can do at home? So they don't have to come in and meet someone if it's therapy. That's what we want to keep in mind because ultimately, if it is medications, we want something with a good safety profile and low risk of side effects for long-term use. And if it's some type of therapy, we want some way of delivering that where patients can start learning those things on their own and build up their self-management skills. That way the burden of treatment is lessened.

[11:06] Dr. Linda Bluestein: Yes, so that over time they're less and less reliant on the healthcare system. I know when I was at my worst in 2009, 2010, 2011, my whole schedule was doctor's appointments and I felt like my illnesses were running my life. Thank goodness it's not like that anymore. But a lot of people really can end up with so many appointments and keeping track of all their medications. It can be a really huge burden. So oftentimes they'll get labeled as non-compliant, but really we're just asking them to do so much.
Keeping track of everything — if they have multiple different doctors, maybe they're responsible for getting that information from one office to another if they're not all part of the same system. Which, again with UVA, that should be a big advantage, that people will actually have people within the same network. That would be really huge.

[12:05] Dr. Dacre Knight: Yeah, and that's exactly part of delivering the care. There is a focus of medicine now that we call minimally disruptive medicine. That's what that focus is — to try to lead medications and treatments and therapies that are patient-focused, meaning focusing on what that care involves for what their life brings and what those targets may be. And in just overall reducing the treatment burden, if we can get adequate treatment with the lowest amount of burden possible, that's the best target.

[12:42] Dr. Linda Bluestein: Yeah, definitely. And I think another challenge that a lot of people with these conditions have is if they go to their regular doctor, their regular PCP, they're probably seeing a lot of patients every hour, so each appointment is fairly short. They're more used to thinking in terms of, if this, then that. They're not necessarily doing a one-size-fits-all treatment, but it's a little bit more that way. Whereas with these patients, like you already said, they're so heterogeneous, so diverse in their presentation, so diverse in how these conditions impact their quality of life.
[13:23] I think that's another really challenging aspect of treating these conditions. And a huge goal of this podcast has always been to get more and more clinicians interested in treating these conditions and helping them to realize that if you learn about these conditions, you will have additional tools in your toolbox and you can help more patients. Can you talk a little bit about your feelings on this — how we treat people in a more traditional setting and how what people with these conditions might need is different, and what do we do about that?

[13:59] Dr. Dacre Knight: Well, one of the clear differences is the complexity, like you just mentioned. It doesn't fit into that standard model where someone goes into a primary care doctor and they've got cold symptoms or high blood pressure, and you can get to a pretty quick algorithm fairly directly and move on to the next patient, churning through 15-minute visits all through the day. It really just doesn't work that well in these complex cases where so many systems can be involved and the symptoms can be ambiguous and mask other things. So it does take time and attention.
[14:36] And once we get there, we keep all of those things in mind that the symptoms may be drawing out, as far as treatment goes. For example, if we take the most common presenting symptoms — pain, and the fatigue that goes with that as a sequela of chronic pain — in the general population, someone who maybe had a knee surgery and has been debilitated by muscle weakness for a few weeks, we just get them back into physical therapy, start strengthening, and it's a pretty quick turnaround. The problem with complex chronic conditions is that it doesn't work like that as well as we want it to. It can work, no doubt. It just takes a little bit more patience, a little bit more gentle movement, and time.
[15:52] But when we're applying those things, we have to think about the burden to the patients — not only the time and travel we were talking about, but also costs. That includes not only medical care costs, but the cost of transportation, the cognitive load that it takes to go through these things. If someone is already burdened with chronic fatigue, how do you really expect them to just jump up and start going about an exercise routine? We have to keep all of those things in mind — financial, physical limitations, the cognitive load required from all of these treatments. So it's not usually the standard of just writing a prescription and saying, see you again in a few months. We do have to have a gentle ease of care and an appreciation of the widespread nature of the symptoms, how variable they can be, and how impacting they can be.

[16:57] Dr. Linda Bluestein: And as you pointed out last time, if people — which is the common scenario, right — don't get diagnosed for usually years, things continue to unfold and you get more sequelae. And it's even harder to untangle all of that when it's been going on for years, and in some cases decades.

[17:00] Dr. Dacre Knight: Right. And the ideal scenario — I mentioned the primary care model, 15-minute visits churning through the day. If that primary care doctor is well adept at recognizing connective tissue disorders and notices that there's maybe a history of joint instability and laxity and then chronic pain, that's not to say that visit can't be relatively short either, at least as an initial visit. But there has to be that basis of knowledge to work from and that anticipation of seeing these patients in clinic, because likely these patients are all throughout the primary care system, just unrecognized. And as you pointed out, that can lead to diagnostic delays.

[18:03] Dr. Linda Bluestein: Okay, so let's talk about sequencing and what to do. This is a common problem when patients are having so many different symptoms — everything's flaring all at once. How do you decide what to address first?

[18:18] Dr. Dacre Knight: Yeah, that is really tricky because sometimes you just want to start everywhere at once, and it would really be great if you can do that. But as we pointed out in previous episodes, there are likely some things that are tying together. If we can kill two birds with one stone as far as symptoms go and target a treatment that may have improvements in other areas, then awesome.
[18:46] So when we see patients come in with this wide array of symptoms and systems that are affected, I think about connective tissue disorders whereby there may be dysautonomic issues, and there may be connective tissue issues that relate to mast cell activation. So those would be at the forefront. Now, of course, we think about IBS and gastrointestinal problems and any neurologic or headache problems and things like that. But usually those are the ones where we may be lucky enough to see improvement if we get some of those first ones targeted up front. So that's where my decision-making would usually start — how can I understand what symptoms are present that may be a constellation of either a hypermobility disorder or an autonomic disorder? And then what are some suitable treatments? Again, going back to minimally disruptive — what are some treatments that they can afford, that are not going to have any major side effects, that may actually improve other areas and organ systems? That's generally how it would start.

[20:02] Dr. Linda Bluestein: Definitely. I've found — and I would imagine you found the same thing — that like you're saying, sometimes you treat the mast cell problems and then the autonomic dysfunction gets better. So if you can address whatever seems to be at the root of the problems, that's going to be oftentimes more helpful. But there are times where the medications that you might want to prescribe for autonomic dysfunction are going to be a little different than what you would prescribe for the mast cell problems, or a little bit different than what you would be prescribing for pain. So in terms of factors that would push you to focus on autonomic dysfunction first, are there certain things that would make you think about that being the highest priority?

[20:46] Dr. Dacre Knight: Yeah, there certainly would be. And that's again a good understanding of what we can elicit from the patient's description of their condition. If I get an understanding that they feel these cardiovascular and neurologic effects a lot throughout their day, throughout their week — severe lightheadedness that impedes them from being more physically active, or maybe they've even had some episodes of passing out or getting to the point where they almost feel like they're passing out, heart rate changes, palpitations — those are the standard ones.
[21:23] Some that are a little bit more tangential, but may actually still be related, are temperature issues and maybe even gastrointestinal issues that can be related to that. So it's really all mixed in, but I'd probably start with the standard ones for an autonomic disorder — that neurologic-cardiac connection between heart issues and dizziness and lightheadedness, particularly with position changes, upright or orthostatic. And if that is something that's high on the list, then certainly we would probably start with those treatments first.

[22:05] Dr. Linda Bluestein: Okay. Have you seen problems with clinicians treating the wrong issue first?

[22:12] Dr. Dacre Knight: Yes — yes is the short answer. The longer answer is that it probably ranges according to the background and knowledge of the clinician and what they have experience and training in treating. So whether it's rheumatology — sometimes I see patients being treated for what we would call seronegative rheumatoid arthritis, where their labs look normal but they keep coming to a rheumatologist. Maybe there's a little bit of some findings on X-rays that make the joints look a little fuzzier, some erosions and things like that. Sometimes it's really hard to tell on X-rays, particularly if they've got a lot of symptoms of joint issues and pain and swelling.
[22:58] So that may be just one example in rheumatology — or mixed connective tissue disease. Sometimes that is treated in place of an inherited connective tissue disorder or a hypermobility spectrum disorder. And that usually leads to patients doing a trial of medications like Plaquenil or hydroxychloroquine. Sometimes there's improvement. We don't really know the whole mechanism of that. We don't really understand the whole process of seronegative arthritis — and when I say that, it means the labs look normal but otherwise they're treating rheumatoid arthritis. If there's improvement, great. But we certainly don't want to miss opportunity for improvement of other areas that may be related to a hypermobility spectrum disorder.
[23:48] We can use that as an example for other areas too. Whether it's rheumatology or — sometimes patients end up in the pain medicine clinic and they start doing ablations and things like that, which I know you're familiar with. And again, those things may help temporarily, but what would we see long-term if you're just getting injections in place of addressing the underlying issue?

[24:15] Dr. Linda Bluestein: Yeah. And I'm so glad you brought those up — those are two great specific examples. Because number one, I hear from so many people that are so frustrated that their rheumatologist does not understand hereditary disorders of connective tissue. And they think that EDS or HSD, POTS, and MCAS should fall under the umbrella of a rheumatologist, but rheumatologists are trained in autoimmune conditions. And there is no one perfect house for EDS and related conditions. So the rheumatologist is going to look for the things that they know how to treat, and treat them in the way that they know how to treat them. The pain clinician — whether they're trained in anesthesiology or physical medicine and rehabilitation, I feel like those are the two primary specialties that do interventional pain medicine — also has their own treatments that they can offer. So they're not necessarily looking for these underlying problems.
The rheumatology mismatch is an important message for people to hear: "I'm having all these joint problems, so a rheumatologist should be able to help me." I think a lot of patients feel that way, and it's worth addressing.

[25:37] Dr. Dacre Knight: Yeah. To add to that, I think these conditions can almost present like a chameleon in the sense that if you're looking at it as a rheumatologist, you're going to see it as a potentially rheumatologic condition. If you're looking at it as a neurologist, you're going to maybe see it as a neurologic condition, and so on and so forth. And the joke is that if you have a hammer, everything looks like a nail.
[26:08] I'm hopeful that in the future we have a better, faster way of making more precise diagnoses — quicker test results, lab results that are high sensitivity and high specificity. So we can avoid the mismatch even between specialties. That would do service to a lot of patients, because if we find patients who are getting treatment for seronegative rheumatoid arthritis or mixed connective tissue disease and there is some improvement, it may not be full improvement. So we don't want to miss an opportunity for even more improvement, and to really complete the picture.
[26:55] And maybe we'll find that there are some aspects of rheumatologic treatments that do have a place in hereditary connective tissue disorders yet. But we just don't know. It goes back to the question of why do patients improve with Plaquenil if they're being treated for a condition that we don't really understand much about? So that's something to be determined. But we've just got to keep an open mind when we're seeing patients, as far as the possibilities of where we can move the needle forward.

[27:34] Dr. Linda Bluestein: And I do think it's really helpful for patients to see a rheumatologist, especially if they do have joint swelling, erythema, or redness around the joints — to get those things properly evaluated, either ruled in or ruled out. Because as you mentioned last time with Hickam's dictum, you can have more than one condition as well. So we want to make sure we are really assessing things properly. Do you find that those labs are often helpful? Do you order a rheumatologic panel, and when do you think that's valuable?

[28:12] Dr. Dacre Knight: That's a really good question. We can talk all day about how everyone is unique and there are so many differences between patients. But by and large, if we look at the most common conditions — again, being pain, muscle pain, joint pain — it's not too surprising to see where there is a lot of overlap and why rheumatologists may get involved. Even though they specialize in autoimmune disease where your body is attacking itself, they see patients with joint pain, and that's kind of their entrance into the rheumatologist's door, as well as some signs of an autoimmune condition being present. That's where labs and imaging can certainly have a role, along with X-rays and so forth.
[29:10] For me, in my practice, when deciding whether to draw labs — including autoimmune labs as a signal of rheumatologic disease — I cast a pretty wide net at first on the initial visit. It's better to not miss something the first go around than to have to draw back and repeat steps. Casting that wide net usually does include some rheumatologic workup and, at the very least, an understanding of the presentation of symptoms. We can ask questions that give us clues about a rheumatologic or autoimmune disease being present.
For example, we're taught in medical school that autoimmune arthritis usually presents with swelling earlier in the day that improves as the day goes on once we start moving joints around — the inflammation kind of dissipates and moves out of the joint space. And it's swelling in certain joints. We can get clues about which joints are affected that may be more likely autoimmune related — hands and feet and ankles and the torso. That would be the initial step, and that's even easier than ordering labs, of course.
[30:38] But the problem is it's hard to get a good understanding of those symptoms. Someone can certainly wake up with pain and have it get better through the day even without an autoimmune disease. That's also possible. So that's why I still do want to cast a wide net, as long as it's not too much of a burden to the patients — it's not going to set them back financially if I draw some extra labs that would screen for autoimmune disease.
[31:08] And in doing so, there's a sequence to the labs I would take as well. There would be initial labs that are better for screening — they have high sensitivity, so they're good at capturing anything that's present and not missing something, though they do have a higher rate of false positives. But it's better to catch it than not. Those include things like antinuclear antibodies, ANA, and maybe some of the rheumatoid arthritis labs that are pretty simple and easy to get, like rheumatoid factor. And then we can decide: are there other presentations of specific autoimmune diseases we're looking at — whether that's lupus or Sjögren's or mixed connective tissue disease and things like that — and based on their presentation and history, do we want to add those labs in as well?

[32:09] Dr. Linda Bluestein: Excellent. And I'm glad you brought up the false positives with ANA because that is so common. I have had a positive ANA intermittently, and I know so many of my patients have, and it can be confusing. So I'm glad you brought that up. With those labs, you're looking for high sensitivity because you don't want to miss something — you're casting the wider net. I think that's a great description.

[32:35] Dr. Dacre Knight: Yeah, exactly. And when it comes back positive, it's likely going to be positive again on future lab draws. So patients are aware — it wouldn't be too surprising to see that again. Why someone would repeat the test is a good question. I would say sometimes we do repeat it because we add other labs with it, like other inflammatory markers such as CRP, to get a better assessment. Even if it was positive but kind of ruled out in the past, maybe we didn't get a full picture. So we want to add some extra labs to it.
[33:10] And usually this is not something that needs to be repeated every year. If we can rule it out and then make a diagnosis of hypermobility spectrum disorder or something akin to that, then we can get on with treatment. Of course, that's not to say that someone can't develop rheumatoid arthritis a decade later. So we do just have to be mindful of patterns and pattern recognition of symptoms and presentations. But it's not likely that that would happen any more than what we would see at the frequency of the general population, just from having an inherited connective tissue disorder.

[33:49] Dr. Linda Bluestein: Okay, that's all great information. We are going to take a quick break, and when we come back, we are going to talk about some of the pitfalls that we see and some key questions for clinicians. We will be right back with Dr. Knight.
[35:56] Okay, we are back with Dr. Knight, medical director of the UVA EDS Center, and we are talking about the big picture when it comes to treatment — what are some of the things we want clinicians to be thinking about, and what are some of the ways that we approach these conditions that might be helpful for other clinicians.
[36:17] So in terms of physical therapy, I think it's no secret that physical therapy can be super helpful for hypermobile patients, but it can also be harmful if it's not approached correctly and if a therapist is not able to individualize their approach. Do you approach physical therapy differently for hypermobile patients, or do you have recommendations that are different?

[36:44] Dr. Dacre Knight: One hundred percent. And I can't tell you how many times I hear someone say, as soon as I mention physical therapy, "Oh, I've tried physical therapy — it was terrible." So we want to appreciate that, at least to start with: okay, we recognize there are limitations. We probably tried to do too much too soon in the past, or just really didn't understand that there was a diagnosis present that could be related to a connective tissue disorder.
[37:19] When it comes to the next steps, it takes a certain amount of counseling and reassurance. But I have not yet had any patients who have seen one of the physical therapists I work with — who are very knowledgeable about EDS and HSD — have that same response, that it was terrible and wiped them out and was so painful afterwards. I know these physical therapists and they are very mindful of where to start and where to meet patients as far as their abilities go. It's definitely better to do too little at first than to do too much. It's part of building the confidence and the trust of the patient. Because if what we have in mind is long-term improvement, it starts from the very beginning — we really want to gain that trust. It's so critical.

[38:17] Dr. Linda Bluestein: Yeah, trust is a really crucial piece. And sometimes these patients look quite healthy, so they will go in for an appointment and the therapist thinks, oh, well, they certainly will be able to handle this load. So, yes, absolutely — starting low, going slow, and really listening to the patient.
[38:39] I think another important part of that is for the patient to give feedback back to the physical therapist. Because a lot of times when I've had patients tell me, "Physical therapy doesn't work for me," and I've asked, "Well, did you go back and tell the therapist what happened? That it was way too much, that you ended up injuring yourself?" — understandably, a lot of the time, they didn't go back. So that therapist, number one, doesn't learn for their own career — they don't learn that they did too much with this one particular person and should be more cautious in the future. And two, they don't have the opportunity to improve the plan for that specific patient. So I do think when people are able to do that, it's very important that they do. But like you said, the trust piece is so important. So you also have to trust your gut: is this somebody who just prescribed a little bit too much but is going to modify their plans, or are they too rigid in their thinking and won't be a physical therapist you can work with long-term? Finding that fit can be hard.

[39:52] Dr. Dacre Knight: No, that's exactly right. It's got to mesh well — the therapist and the patient have to certainly be in sync. It's part of the whole treatment process. The best scenario, as you pointed out, is where the physical therapist is open to receiving feedback and the patient will give feedback. And then with time, that gets tailored to that individual patient. And the physical therapist is aware to look for improvements or lack of improvement and where to shift the direction of the therapy. That's really the most ideal course of physical therapy — where it is engaged in both directions and maintained to a point that the physical therapist can use their experience and skills to change or shift treatment based on how the progress is going.

[40:51] Dr. Linda Bluestein: I'm curious to get your thoughts on this too. In my experience, one of the most frustrating things about physical therapy for patients with EDS and HSD is the insurance model of — you have a problem with your ankle, so we're allowed to treat your ankle. We do scoring of how functional or dysfunctional this particular body part is, and then we assess that over time because the insurance company wants to have these metrics. And you need to be improving enough, but not too much, in order to get more sessions approved. And then people with EDS and HSD are going to have something different happen — maybe their ankle is doing better, but now that threw off their shoulder or their hip. So to me, that is a big part of the problem: the way insurance covers physical therapy.

[41:45] Dr. Dacre Knight: That's an excellent observation, and it couldn't be more true. It's just such a wacky world that we live in with medical health insurance and what we have to do to work around it or adapt to it. But yeah, I see these cases all the time. Patients say, well, the physical therapist told me we're only working on the ankle today — don't even try to mention your shoulder or your kneecap.
[42:11] But you're absolutely right that part of the therapy will certainly involve other joints and muscle groups. And there may be favoring one group or the other that leads to different effects. So it's accurate that you've got to keep all of those regions involved and in mind to treat. How we sneak around the insurance barriers — that comes with time and experience, and every insurance provider is different. But usually a good physical therapist is aware enough to say, okay, we're working on the ankle, but we know this muscle group could potentially be involved, so here are some things you can take with you to work on. And that's what we'd like to see a physical therapist deliver — resources that are ultimately just going to improve them overall.

[43:21] Dr. Linda Bluestein: And your point about change over time is also super important. I was in physical therapy for my shoulder and then I injured my foot, so they opened a second case. I would literally go in one day to have my shoulder treated and go in another day to have my foot treated — talk about extra transportation time. And then that clinic dropped my insurance because the insurance company dramatically dropped what they would reimburse the physical therapist for. I know the owner of the entire chain of clinics, and he said, "I could not keep my doors open if I accepted insurance payment from this particular carrier."
[44:07] So it can be really challenging from the standpoint of trying to run a physical therapy practice as well, because of the way things change over time. I've ended up going outside of my insurance so that someone can address whatever it is that's bothering me. But I recognize that I'm extremely fortunate to be able to do that, and most people do not have that ability.
[44:27] That also sometimes leads people to other options, which I think can be super beneficial — like Pilates, Gyrotonics, gyrokinesis, working with movement specialists who are maybe not physical therapists but who may be more affordable if your insurance doesn't cover a lot of physical therapy anyway. If you find someone with the right expertise, that can be a real option. Do you have certain other movement therapies that you find to be particularly helpful?

[44:57] Dr. Dacre Knight: Yeah, I think you just hit them. And I love it when I hear patients may already be engaged in them, sometimes just by chance. There is actually a physical therapist I work with who was trained in Pilates as her kind of method of delivering therapy, and that's great. Pilates is fantastic. I know a lot of former dancers like yourself may be into Pilates — I never really learned what the connection is. Is it just because it's similar types of movements?

[45:35] Dr. Linda Bluestein: So Joseph Pilates originally was connected to dance, and he originally developed Pilates for hospitalized patients using the hospital bed. And yeah, there's a huge connection there. I think a lot of dancers get introduced to Pilates and it appeals to them for a variety of reasons. And yes, I know a ton of dancers who later become Pilates instructors. It's a very common path, yeah.

[46:02] Dr. Dacre Knight: I knew there was some connection there. So yeah. And this can certainly be a resource among other types of movement therapies. Sometimes patients say, like you gave the example, the insurance runs out or won't cover it, and then they kind of reach this fright that they're not going to be able to receive any more treatment and they're at the end of the road. But if we can at least engage in some of these other movement therapies — with or without someone guiding them — obviously it's much better if there is a trainer to help guide and learn the specific movements and direction. But it's also not to say that patients can't learn those themselves once they've worked with someone, or find other ways to get educated on those.
[46:58] I know there are a lot of great movement therapists out there who are connected to the world of EDS and the EDS Society. They've written books, they've got webinars and things like that. Any number of ways to be engaged. And really, when it comes down to it, something is better than nothing. Getting the confidence of the patient that they can do these things usually starts with that consultant or physical therapist, at least to get them to a place where they feel comfortable and confident engaging in some of those movement therapies. But it's really important for them to be engaged because we definitely want to get them to a place where they're comfortable doing it and confident they can do it correctly.

[47:47] Dr. Linda Bluestein: Yeah. Kinesiophobia — fear of movement — is such a real thing. I remember when I was writing my first article about hypermobility, joint hypermobility, connective tissue disorders, and pain management, I hadn't really come across the word before, and I saw it and thought, oh my gosh, that's exactly what has happened to me that I'm trying to get over. Because it can be so challenging if you hurt yourself doing small things, and so many movements feel uncomfortable to you — it can be very frightening.
[48:16] So I think, like you said, working with a movement therapist of whatever type, if you have a good rapport and they are a good listener who really recognizes the person in front of them and customizes their treatment plan — is this somebody who needs to be encouraged to do a little bit more, or is this somebody who really needs to be held back and given permission because they tend to push themselves too hard? I think finding that fit is key.

[48:49] Dr. Dacre Knight: That's it. Because you really do want to start somewhere. And knowing where that patient is starting — if it is kinesiophobia, the fear of movement may be tied to one specific movement. But then the downstream effect is that you kind of stop global movement in other areas for fear of triggering the same thing, whereas you can actually potentially move other areas and that may even improve the area that is deconditioned or more painful. Building muscle — the whole biological process of building muscle or breaking down muscle and rebuilding it — there is a healing effect from that.

[49:35] Dr. Linda Bluestein: Definitely. And what do you think about — you already mentioned webinars and all kinds of virtual, remote, and video options. What do you think about the balance of that versus doing things in person? When do you think it's really essential for someone to be working with someone one-on-one in person? Are there times where that really is a necessity?

[50:00] Dr. Dacre Knight: There certainly are. And again, it's meeting the patients where they are. I have patients who are really debilitated — wheelchair-bound, bed-bound — and I actually came upon a service recently that I wasn't aware of. There are some physical therapy groups, at least in our region, that go to patients' homes and will provide treatment. I know they do it for geriatric care and patients who have had major surgeries and things like that. But for the EDS and hypermobility community, that can be a huge lifesaver because if they're in such a condition that they really can't get out to see someone, having someone come to them could be a really great option. Though I understand that is limited to only certain geographical areas.
[51:02] So back to your question of when you want to meet in person with someone — that's usually always the best place to start, one-on-one. That's why almost all of our visits are in person initially. We want to see how the patient looks, how their body moves, and we can get a close exam on it. So that's usually the ideal situation. But given the other limitations, whether it's insurance or whatever — if it's something that can be done by video or something they can do themselves online or through webinars, then again, something is better than nothing. So by all means, go for it.

[51:51] Dr. Linda Bluestein: Yeah. Some of the things for us, like looking for piezogenic papules or atrophic scarring, or soft velvety skin — you have to touch their skin in order to assess that, and it helps to have touched a lot of people's skin because that's obviously a very subjective finding. So when it comes to seeing a physician or somebody who might be making a diagnosis, I think that is an essential thing to do whenever possible. Okay, when it comes to hypermobile EDS in particular — because we know that's the much more common subtype — and HSD, POTS, mast cell activation disorders, et cetera, what does "getting better" actually mean?

[52:43] Dr. Dacre Knight: That's a great question, and I really like it because this is just a running theme that it may be different for everyone. The presentations and symptoms may be different, so what are our goals? And those may be different too. That's why we bring in what I've mentioned on another occasion — what we now call shared decision-making, where we have a goal that applies to the patient and is also the patient's goal, rather than us just saying, we're going to hit this metric and do whatever it takes to get there.
What amounts to it, if our mission is to deliver function and get the patient going and active and ultimately just having a higher quality of life, then we need to understand what brings them quality of life. What do they enjoy doing? Do they like working? Do they like ice skating? Do they like painting? How do we target that? I'd love it if everyone could go out and climb a mountain, but there are lots of people in very good health who won't go out mountain climbing. So why would we even bother shooting for that? Let's just go for something that fits them, that fits their wishes and desires and what's achievable.

[54:08] Dr. Linda Bluestein: Those are really great points. I was told, when I was in my worst situation and feeling really terrible, by a colleague who had a pain management practice — I was working as an anesthesiologist in the operating room at the time — and this colleague said to me, a lot of patients make the mistake of thinking that they need to get the pain to go away and then start doing what they love again. But really, if you can, you want to start doing what you love and reincorporating that, even if it looks different for a while. Starting to try to get more of a normal life back so that the pain doesn't take over your whole life. And for me, it really had taken over my whole life. I'm sure you've seen that a lot.

[54:54] Dr. Dacre Knight: I see it a lot and I hear about it a lot. And I'm just going to go way off on a tangent here and give a plug for Oprah's book club, because I'm listening to an audiobook right now that's fantastic — it's called The New Earth. And it's exactly to the point you just made, which is: what are we expecting to find joy from? Are we going to find joy from the things that we do, from having completed them? Or are we going to find joy from doing them? The idea is that if we focus on finding joy or improvement in doing the things rather than in having completed them, then I think we're going to be much better off. We're not going to have mismatched expectations — "I've done this now and I should feel better, and I don't. Why not?"
[55:40] I think that can go with treatment, it can go with physical therapy and exercise. Doing those things at a level that is comfortable — I don't know that physical therapy should really bring anyone joy, but at least doing it in a way that you're comfortable and satisfied with the process — I think that will produce a better response than just grinding through it and thinking, I did it. Now what? And it doesn't have to just be physical therapy. It can be mind-body therapy, or just anything that you find comfort in doing that is meant to improve your condition.

[56:29] Dr. Linda Bluestein: Yeah, I love that. And how do you set expectations with patients that are honest without taking away hope?

[56:36] Dr. Dacre Knight: I think that ties in exactly with what we were just talking about. The expectation we want to bring — and what we want to achieve — is ultimately improving quality of life. And there are so many different ways to approach that and to see what that exactly looks like. So as I get to know patients and understand what they enjoy doing — hobbies are usually one of the first things I ask, and they usually give me a funny look, like, why do you even bother asking me that? Or, maybe I did have hobbies one day, but they're far gone from where I am now.
[57:22] But not only hobbies — what is it that you like to do, what do you enjoy, and what is it that's causing you to be obstructed from doing that? The expectation then, accordingly, is that we want to get to a point where we can do those things that you enjoy doing. If there are still some subluxations that happen from time to time, that's okay. And if we're able to get to the place where we are making improvement, then what we generally see is that it cycles upon itself — more improvement begets more improvement. So just the act of doing it can help over the long run.
[58:16] That's the starting point: let's take small steps. We talked at the beginning of this episode about magic treatments, and we don't have those. We don't want to promise a magic treatment right from the beginning, because that's definitely going to be a sorely missed expectation. But maybe the patients will see some magic in the process as they're going about it, if we set those expectations accordingly. If we start low, go slow, and even with the goals of treatment, if we have a small goal we can work towards in the short-term period, we can usually achieve bigger goals over the long-term period.

[58:57] Dr. Linda Bluestein: Yeah. Those are all very consistent with what I've experienced both personally and professionally as well. You want to just start things going in the right direction, and that can — just like pain can beget pain, right? Once you start having something in pain, everything else starts to hurt. Okay. So for clinicians, how can they avoid overtreating symptoms while still providing adequate support?

[59:23] Dr. Dacre Knight: I think this is a common problem, and I would venture to say it's more common in practices where they have less time and less attention to what may be underlying issues. We see it far and wide in so many areas. I can use an example of when I used to work as a primary care provider straight out of residency. We talk about appropriate, guideline-based treatments. Someone's got a cold, and in a lazy response, you maybe just throw antibiotics at them — take your antibiotics, go away, move on to the next patient. And there are so many things that go wrong with that, not to mention big societal problems like antibiotic resistance.
[1:00:17] But it's the same thing, I would posit, with a patient with hypermobility spectrum disorder who comes in with back pain. We just give them some medication that's going to wipe away the pain there, but ultimately the back pain comes back two weeks later. And now it's associated with knee pain. And then we want to do stronger medication and keep running through that cycle. So we really have to do our due diligence at that first visit. It may take more time, but it's a better investment for ourselves as providers over the long run and for the patients themselves.
[1:00:57] So I think that's where we have to draw the line between just treating symptoms and understanding what may be the underlying causes and mechanisms involved. Even if we don't understand every exact mechanism of hypermobility disorders, mast cell activation, or POTS — because we don't, there's still a lot of mystery to it — if we can at least recognize that those may be present and tailor the treatment to target an underlying root cause rather than putting on a so-called band-aid, I think we'll find better overall outcomes.

[1:01:33] Dr. Linda Bluestein: And how can patients tell the difference between a thoughtful treatment plan and a reactionary one?

[1:01:38] Dr. Dacre Knight: I would like to think that in most cases, a provider would be describing the treatment process and the process they go through to arrive at that treatment, in terms that patients can understand too. Just throwing out a bunch of medical jargon and saying, here's your treatment — I wouldn't say that's acceptable.
[1:02:04] In the course of a good clinical visit, we invite feedback from the patient and check for understanding — that what we as providers tell them, they grasp. We can kind of have them summarize it for us to confirm they got it. So I think that's what patients would want to look for: a provider giving them the opportunity to summarize their treatment plan, why it's there, and what it's intending to target, and making sure that the patient's goal is in line with what we call the shared decision-making process — that the provider has kept their goals in mind as well.

[1:02:43] Dr. Linda Bluestein: That makes sense. And it just can be so challenging. So it's so great for people to have this information — for both patients and clinicians — to hopefully get improved care in the primary care setting, because these patients are in a lot of specialist offices. But primary care really should be the person who is able to recognize and at least provide some introductory tools so that patients can get care locally when possible. And then if they need to, they can move on to more complex things. But it's a shame that most people need to go someplace else even for some of the basic things, I guess is what I'm saying. Yeah.

[1:03:36] Dr. Dacre Knight: Yeah. And I would like to think that in due time, primary care doctors are going to become more knowledgeable about these conditions. We're not there quite yet, but awareness is growing, the science is growing, the educational resources are growing. I would like to think that with time, primary care doctors will be more knowledgeable and more open to considering some of the treatments themselves. It's not so far out of reach of a primary care doctor, really. It's just a matter of having some basic knowledge behind it.
[1:04:19] I can't say it's so easy because I've been doing this for years and haven't figured out everything. But as someone with a background in primary care, it wouldn't be so far-fetched to think that at least some of the common initial starting points of treatment could be available in a primary care setting.

[1:04:36] Dr. Linda Bluestein: Yeah, that really helps to have your perspective because I kind of function as a quarterback or primary care now for my patients — I might be treating more so their pain, but then they'll be asking me about other things, not treating their UTIs and things like that. But I think having your perspective on the realisticness — if that's even a word — of having primary care doctors starting to really recognize these conditions and be able to offer some type of treatment, I think is really helpful.

[1:05:12] Dr. Dacre Knight: Yeah, it's interesting to think about what medicine is going to look like in the future, and certainly we're here today talking about EDS and HSD. How is that going to be involved between specialists and primary care if we do get to a point where primary care doctors are more knowledgeable? And maybe this is a really good topic for a future episode too — there are primary care models out there that are so overburdened that they have incorporated AI into their practice as much as possible to help facilitate patient access where there are limitations on providers and primary care doctors. There are some AI tools that can be used to gather information from patients and their medical history and kind of synthesize that for primary care doctors so they can run through some of those things more efficiently.
[1:06:07] And what does that look like in EDS and HSD? I don't know. It's a good question, because these are very complex conditions. Is it too complex for AI? I don't know, because we haven't really tried yet. There are some tools we are looking at, at least in the research space first. But does that mean we'll be able to open those doors up to the clinical space too? Time will tell. And these technologies are evolving so rapidly. It may not be much time — it may just be a matter of months or years that we see things change quite rapidly.

[1:06:46] Dr. Linda Bluestein: And I feel your hack coming on here. I always end with a hypermobility hack. Are any of these tools that you're mentioning things that patients could access now themselves, or are they things that a clinic employs and then shares with the patient for them to fill out?

[1:07:04] Dr. Dacre Knight: Yeah, this could be a great hypermobility hack. Thank you, because I had not thought about this ahead of time. But yes — the short answer is that these are tools that can be available to patients here and now.
[1:07:19] Going back to some of our previous conversations about what a patient would want to do to prepare for a visit — I mentioned taking notes or jotting things down on your phone. I'm totally open to that. I love it when patients do that because I know I'm going to meet all of their marks that they had anticipated, and we'll have a chance to go through those. It's not something that comes up after the visit.
[1:07:40] But taking that a step further — and I've had patients do this already — you can take some of those notes, add a little bit of your history, and put those into one of these AI tools, whether it's ChatGPT or Gemini or pick your favorite large language model or chatbot, and run it through there and get a summary. See if that fits your description of your condition. Sometimes it puts things in an easy-to-read format with bulleting and bold lettering and things like that, that may be useful to the provider. No harm in doing that. And certainly, as long as you're going into the provider — because the downfall we see with AI tools, and really just anything you read online, is that patients take it upon themselves to jump to treatment that may be unsafe or incorrect. So as long as you're going into the provider, it's totally safe and fine to do that.

[1:08:41] Dr. Linda Bluestein: Yeah, I love that. I've had a lot of patients who did exactly what you said, and the AI tool helped them organize the information so they have their concerns and symptoms listed out by different system. That helps us to be able to see it. Actually, I'm seeing somebody later today who did exactly that — you can just tell it's AI-generated, but that's great. It helps you. So yeah, I love that hack.

[1:09:11] Dr. Dacre Knight: And it's funny, the patients are kind of sheepish when they do it, like, "I apologize, I'm sorry." And I'm like, oh, it's great — it's actually a very easy-to-read summary and I appreciate you taking the time. So yeah, it's just fine.

[1:09:20] Dr. Linda Bluestein: Yeah, that's a great hack. Okay, well, thank you so much. This has been a great conversation as always. Can you share with people just a little bit more about what you're doing at UVA and where they can learn more about you and about the clinic?

[1:09:36] Dr. Dacre Knight: Well, what we're hoping to do is get all of these things right that we just spent time talking about today — shared decision-making, targets of treatment, and all those things. There's a lot going on. But at least for the time being, we're building the team of providers and staff who are all on the same page with this message too. We meet regularly and discuss patient cases. And I think that's really what is ultimately in best service to patients, because we know that the best outcomes are delivered through multidisciplinary care. So we need to build those bridges. That's what we're doing at the University of Virginia EDS Center.
[1:10:16] Having said that, we want to not only deliver on patient care, but we want to advance the science and make groundbreaking discoveries as we can — all in service of delivering better treatments. And maybe we will get back to what we discussed at the beginning of this episode — a magic treatment one day. That's all to the purpose of working in that magic to find patients in a good place where they can all live a high quality of life.

[1:10:45] Dr. Linda Bluestein: I love that you have those multidisciplinary meetings because, as we all know, like in a cancer conference, you'll have the radiologist and the general surgeon and all the different oncology specialists all there to discuss one particular case or a few cases that week. So I love that you're doing a similar thing for EDS. That's fantastic.

[1:11:08] Dr. Dacre Knight: It really works. And we find joy in it, because otherwise we'd be scratching our heads alone and feeling a bit lost in it. Having that team model is so supportive.

[1:11:24] Dr. Linda Bluestein: Okay. And in terms of where people can find you — I know you're not super active on social media, but you are on X, right? Are you on any other platforms?

[1:11:36] Dr. Dacre Knight: Yeah, that's the main one, I'd say. I get so busy with emails day in and day out that I really have a hard time keeping up with it. But I'm glad that you've got this platform out there, so that takes away some of my efforts to get the message out to others, which I think is so critical. So yeah, I'm on X and LinkedIn — although I haven't been looking for a job and I won't be anytime soon. We are hiring, but I think we've found all the individuals we want to hire at this point. Maybe some more down the road, so keep an eye out on LinkedIn if other job opportunities come up, because we are growing very quickly.

[1:12:23] Dr. Linda Bluestein: Amazing. That's great news that you have people in the pipeline to fill some of those positions. Fantastic.

[1:12:28] Dr. Dacre Knight: That's exciting. We've got a lot of work to do, so we need them here yesterday.

[1:12:36] Dr. Linda Bluestein: Yeah, exactly. That's wonderful. All right. Well, thank you so much again for taking the time out of your busy schedule to chat with me. I really enjoyed our conversation.

[1:12:47] Dr. Dacre Knight: Yeah, it was great, Linda. I enjoyed it as well.

[1:13:45] Dr. Linda Bluestein: Well, I really enjoyed having another conversation with Dr. Dacre Knight, who is medical director of the EDS Center at UVA. And I want to 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.
[1:14:04] 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.
[1:14:21] 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.
[1:14:34] 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, [email protected]. You can find answers to common questions at uvahealth.com/support/eds/FAQ.
[1:15:14] 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 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. For more information about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.