Why Everything You've Been Told About EDS Lifestyle Is Wrong with Dr. Dacre Knight

[00:15] Dr. Linda Bluestein: Just because you didn't meet the exact criteria on that given day for a certain condition that this doctor was evaluating you for, clinician was evaluating you for, doesn't mean that you are not experiencing the things that you feel like you're experiencing.

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 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 Disorders Center, which is proudly partnering with Bendy Bodies.

In this episode, we will be talking about the first 4 letters of the MENS PMMS treatment algorithm for hypermobile EDS and HSD. So we will be talking about movement, education, nutrition, and sleep. As always, this podcast is for educational purposes only, and it's not a substitute for personalized medical advice. Be sure to stick around until the very end so you don't miss our special hypermobility hack. Let's get started.

I am so excited to be back with Dr. Knight, and today we're going to be talking about treatment for EDS, HSD, and comorbidities like POTS and MCAS, and questions that we frequently get asked from our listeners. How are you doing today?

[01:52] Dr. Dacre Knight: Doing great. And as always, very excited to be here to see what we've got in store.

[02:00] Dr. Linda Bluestein: Fantastic. And I think for the purposes of this conversation, because we could probably spend hours and hours discussing this, but we're just going to share some of our favorite tips or stories and things that we've found to really make a significant difference for people. I think we should use the MENS PMMS framework, which is just one possible way of approaching somebody with these conditions that allows us to be thinking about movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements. It helps me think of the different categories so I'm not just thinking about medications, for example, or just thinking about nutrition. So is it okay with you if we approach it in that fashion?

[02:50] Dr. Dacre Knight: I think that's an excellent approach.

[02:50] Dr. Linda Bluestein: Great. So first let's talk about movement. And I think this is so interesting because I actually just came back from a physical therapy conference. Most of the attendees were physical therapists, and so many of them understand joint hypermobility and connective tissue disorders quite well, but there are so many people who struggle to find a physical therapist that can work with them. And of course, when you are giving a talk on hypermobility, you usually have people in the audience who are attracted to that topic for a certain reason. So do you have tips that you share with patients for how they can find a physical therapist that might be a good fit, or somebody that would be more interested in working with them as someone with EDS or HSD?

[03:29] Dr. Dacre Knight: Yeah, this is a really good question because not only is it a question I get a lot, but it is so important to their care on an ongoing basis. We want to see that they do have access to a physical therapist closer to home, someone that they can relate to, that they feel comfortable working with, and to provide ongoing care. It's a little bit variable how much they need — a lot of patients gain the knowledge and they're able to do some of those things on their own at home, which is just fine, but sometimes it's unpredictable when they're going to need to recheck with that physical therapist.

As far as my advice on finding the right one, there are a couple of things. It really surprises me how many physical therapists are already pretty knowledgeable about these conditions. I would say of any specialty, they're probably more knowledgeable than others — versus primary care or family medicine or internal medicine or rheumatology and so forth. Because they're really at the front lines. They're the ones seeing the hypermobility and the distress it causes and the injuries that can happen from it.

So point number one is that it is among those probably one of the better specialties to look for someone who's got some knowledge. And then there are a lot of avenues. One, it is good if you can access someone who is fellowship trained in physical therapy. But as with any specialty, there are some who are very knowledgeable just by their own experience and by their own interest in self-educating. So it's not necessary that someone needs to be fellowship trained or have a doctorate, but that is a good delineation at a broader level.

Another is that there are various sites and resources with directories. The EDS Society has a provider directory where they can take listings from anyone who volunteers their information. So that's good — knowing that they've already availed themselves to this population. It's not like people are hunting them down; they've already listed themselves.

And then last resort, word of mouth. There are a lot of patients who get referred that way through connections with friends or family. And maybe if they don't know, maybe the physical therapists that they do know would know of another physical therapist. I've encountered that. I've had patients reach out to physical therapists, and I myself have reached out to a physical therapist who didn't feel comfortable treating EDS or hypermobility disorders, but they may know who does — because obviously they are closely working together.

[06:36] Dr. Linda Bluestein: And I appreciate what you said about somebody being local. For me, in my experience with physical therapy, if I can have somebody that actually can work with me one-on-one in person, I do prefer that over the virtual options, even though I know for some people that is the most practical option — either they live in a really rural area or they just don't have access to somebody with the right skillset. But for me, the hands-on is really helpful.

And I actually should share that it was my physical therapist who first suggested that I might have EDS. I had been to an orthopedic surgeon at Mayo. I was going to have a transposition surgery of my ulnar nerve, and he measured my elbow hyperextension in both arms. He said I had extreme — I think it was like 18 degrees or something like that. At that time I didn't know anything about EDS. This was when I was still working in the operating room, and he just commented on it. He said, oh, after the surgery, you're going to lose that hyperextension in your left elbow. But that's no big deal.

And then I had a PM&R doc who commented on my excessive range of motion in my cervical spine and my lumbar spine and a number of other places, but she also never said what that might mean. It was my physical therapist who, after a few sessions, said, you have hypermobility in a lot of your joints, and this could actually be an important factor that's influencing your health. And I had never thought about that before. So physical therapists can really play an important role when it comes to these conditions.

[08:15] Dr. Dacre Knight: Yeah, totally agree. And I think as a whole, they are really underutilized. The emphasis on what can be done short of surgery should really be upheld because surgery is always the last resort. I remember just a year or two ago talking to my sister about it — orthopedic issues. She doesn't have hypermobility, but she had knee or hip pain, and she was looking at surgery and no one had really brought up the topic of physical therapy for her at that point. I brought it up and lo and behold, she was able to work through those issues and didn't need surgery.

Sometimes surgery is necessary, but it goes back to your point that we really want to make an opportunity for care that can be delivered in the least invasive way and that is potentially sustainable over a longer period of time.

[09:16] Dr. Linda Bluestein: And we're talking about this because the first letter M stands for movement. There are, of course, Pilates instructors, Gyrotonics, personal trainers, and all kinds of other approaches besides physical therapy. But I think physical therapy is such an important place to start, and I would love to know how you answer this comment that at least I get a lot — so I figure you probably get it too — when people say physical therapy doesn't work for me. How do you handle that?

[09:53] Dr. Dacre Knight: Oh yes, that is a common description. And the first answer is that some physical therapy can truly be damaging if it's not done correctly. That really pertains to who's doing it and what is their level of knowledge and understanding. That makes a huge difference because, while I said that a lot more physical therapists than we may realize know about EDS and hypermobility disorders, there are some who still don't know and are not aware. We would hate to see patients be pushed into therapy that is really just counterproductive, and it happens unfortunately.

So the counseling provided then is that, yeah, it's very unfortunate when it does happen, but do know that there are still opportunities for improvement yet to be had. And that's what's crucial. In our center — I know other sites and other clinicians like yourself have connected with physical therapists — we are confident in the care that they can provide and we want to get patients to them as soon as possible.

[11:08] Dr. Linda Bluestein: Yeah, absolutely. I kind of forgot about one physical therapy session that I had where I really had a terrible flare afterwards. The person spent the whole time trying to increase the stretch in my hamstrings, and it was a while before I got back to my baseline. I think the slow and low approach is appreciated by a lot of physical therapists, but maybe not all of them. So even if you're young and you can walk into the physical therapy office and they might look at you and think, oh, you're 25 years old, of course you can do these exercises — maybe people can say to the physical therapist, I know it might look like I would be capable of doing a lot, but can we start a little lower than usual, if you feel like they aren't super knowledgeable about EDS and HSD.

[11:57] Dr. Dacre Knight: Yeah. And the concerning thing about that too is that if someone has had a bad experience, then they are less inclined to try it again. Rightly so. And I hate to see that because it's a failed opportunity for improvement — no fault of their own. It's understandable why they would be cautious about approaching further therapy.

[12:18] Dr. Linda Bluestein: Yeah, definitely. And that's why when people say that to me — it doesn't work for me — I say, let's think about this like dating, and you might have to date more than one person before you find the right one. Same thing with a mental health therapist. It might take you a few tries before you find the right one.

And I also wanted to comment about movement in general, because of course we're talking right now about movement guided by a professional, but we also should be thinking about movement that we're just doing on our own — whether it's walking around the house, walking around our neighborhood, taking the dog for a walk. I'm sure you've seen this where both over-resting and over-pushing can both cause problems. Do you have advice for people about that?

[13:01] Dr. Dacre Knight: Yeah, that couldn't be more true. And so that's why we say on an individual level, we really have to approach it to understand what's the capacity of someone, what are their goals, and what do we expect them to achieve. We do have to be mindful of it. Yes, we're talking about physical therapy and exercise and all of that — and we are avoiding the deconditioning, the too-much-rest part. But the physical therapy itself, we have to approach that in the lens of, as we would say from our Hippocratic oath, first do no harm. It's going to be totally useless if the only thing patients are getting from it is pain and suffering.

So we do have to approach it very slowly and carefully. Exercise itself has gotten a bad reputation in this field because we don't want to give patients the message that you just get out and start running and everything's all better — because it's not. And likely there has been enough injury and deconditioning that you can potentially reinjure yourself very easily if it's not done carefully.

So we talk about the joint protection program when we approach physical therapy and movement. That's simply just knowing what your joints can do and what they cannot do, and then knowing the things you should do to prevent further injury. That's the real basis of it. But it does have to be approached very carefully.

[14:48] Dr. Linda Bluestein: And I think it also helps knowing yourself — knowing if you're somebody who needs a little bit more encouragement and needs to be pushed a little bit, or are you somebody that needs to be held back? When I'm talking to a patient, that's one of the things that I'm really trying to figure out, where they are in that spectrum. Because there are people who are definitely doing too much and paying for it later on a really consistent basis, and other people who should be trying to push the envelope a little bit more.

[15:15] Dr. Dacre Knight: Yeah, that's exactly right. And I think back to a specific scenario. I had a 34-year-old patient, a very active, younger professional who had been high-achieving and very athletic through her life. Over a span of just 2 years prior to seeing me, she felt like her life had just completely unraveled because she was having the symptoms of what we now know to be hEDS. It started with brain fog and then more exercise intolerance. She was someone who liked to continue doing the exercise she had brought into her early adulthood from her adolescent years. And then she developed some of that autonomic dysfunction.

What was striking to me is that a lot of patients, understandably, may just kind of stop right there. And that's one pathway that's taken. This patient had done all the standard things, had gone and seen her primary care doctor, done the usual run-of-the-mill lab testing and exams, and was told that it's stress and burnout and other somatic-type symptoms. What she did — and I see this a lot, and I'm sure you do too — she ultimately internalized her symptoms and just kind of thought it was upon herself to push harder, to push against this force that was pushing against her.

She was telling me the details of how her workout plans — she didn't quite double them, but she tried to put in more time and sweat into her workouts and was ignoring her body. We always tell our patients to go with your gut and pay attention to what the symptoms are and how they're evolving. But unsurprisingly, she got worse. She just got to the point that she couldn't exercise anymore at all. And then that's where the symptoms pick up multiple folds, and at that point it's a lot more difficult than if we can catch it sooner.

By the time I saw her and did all of the evaluations that were needed — and were otherwise just not done, not in the care place that they could be done — once we got that redirected, with a little bit more understanding of autonomic dysfunction and how to balance that with hydration, pacing specifically, and other physical therapy skills she could bring into it, her function did improve. It first stabilized and then we did find some improvement after another year.

What I was hearing from her at some of those follow-up visits is that she wasn't getting sicker just because she was weak or not exercising enough. She was getting weaker and more symptomatic because she was following advice that she thought would be for the normal person — for the general population, where you have a rough couple of days, you rest up, and then you go at it even harder to try to rebuild your level of energy and function. And we know that patients with hEDS and HSD are a different category from the general population, which is why even physical therapy, in the wrong approach, can do harm.

[19:05] Dr. Linda Bluestein: Yeah, definitely. And what about POTS? Do you have different advice that you give people regarding exercise or movement with POTS?

[19:12] Dr. Dacre Knight: Yeah, that's a very good question because if we don't recognize it ourselves, the patients will recognize it very quickly that the standard exercises are not well-suited to them. These orthostatic symptoms — meaning symptoms when you're upright or standing for prolonged periods of time — make it all worse. So we have to think about things that we can do in a position that's not requiring them to stand up for so long, or doing the up-and-down repeated movements.

Take a recumbent bicycle as an example — that's talked about a lot. You're getting good lower extremity resistance exercise, but you're in a position that's seated or closer to lying down. So you have better distribution of your circulatory system, and that does help patients a lot.

[20:12] Dr. Linda Bluestein: I have a patient who has POTS who thought, well, I would never be able to do a rowing machine, even though rowing is also a seated exercise. But that person worked with a personal trainer a little bit, and the personal trainer taught them the proper form for using a rowing machine. And now they're able to do it quite regularly without flaring up back pain or anything. So that's good.

[20:38] Dr. Dacre Knight: Yeah. And it's all part of our job to reassure patients that there may be things that can still help. It's a tricky balance from what they've experienced to trying to encourage them, find the right path, and get them on it.

[20:53] Dr. Linda Bluestein: But we all need to move. That's why, out of the MENS framework, movement is the first letter. So we're going to move on to the next letter, E for education. I feel like this is something that maybe a lot of people don't really appreciate, because of course physical therapy is one of the first things that a lot of people are prescribed if they are suspected of having EDS. But I found that when I understood about central sensitization, for example, and catastrophization, and realized that I was doing that to myself and that it was making my pain worse — it really helped me a lot. I wasn't imagining things, I wasn't creating the pain in my head, but at the same time, that's where we feel everything, right? In our brain. So how do you educate people about things like central sensitization? These are really difficult topics to broach.

[21:50] Dr. Dacre Knight: Well, it is. And it's especially difficult in any medical topic when these may feel contrived, like the doctor just pulled this out of his hat and is just making something up just to try to make me feel better or convince me of one thing or another. I would say in the early years of understanding central sensitization, it was very much theoretical. But what we have to benefit us now is more evidence and data showing from laboratory studies that there are some objective measures of this type of pain and pain conditioning — what we relate to as nociplastic pain.

I know we've gone through that in a recent episode, but to go through it a little bit further when it comes to the patient: I think it's reassuring to them to know that it's not one specific injury that has caused this, because otherwise they would be told, well, what did you do? And the answer is, I didn't do anything, the pain is just there. And it's not just one specific imaging finding that's going to identify it either. Your MRI looked great, your X-rays are normal — and that's the message. Those are the situations where patients may have developed some doubt, because they've seen providers describing it as such. So we have to go through and explain the process and the mechanisms.

[23:43] Dr. Linda Bluestein: Yeah, definitely. And I should have probably defined central sensitization before using it in this context. But we know that pain is one thing and damage is another thing, and they don't always correlate. Sometimes the problem actually lies in the software of the body and how it processes pain signals. We can be having pain in parts of our body where there isn't necessarily damage, and we can have pain even though there's not damage in that part of the body.

I found it so helpful when I saw a YouTube video by Dr. Dan Clauw — that was truly the beginning of a complete 180 in terms of my health and my problems. It just made all the difference in the world to understand those concepts.

[24:36] Dr. Dacre Knight: Yeah. I learned a lot from so many others too. I had a pain psychologist illustrate it in a pretty good way for me to grasp it as well. And I think the more we have a better grasp of it, the more we can employ some tools to help control it.

The way she described it is that there is this central processing of pain that takes place, and it can be amplified or it can be diminished — there's a volume adjuster, if you will. The analogy she would use is someone in Vietnam or on a battlefield who got their leg shot out or stepped on an IED or a grenade. The first hour afterwards, they may not feel any pain. I saw this firsthand — I was working at a combat trauma hospital in Afghanistan. They just have no awareness really. We would look at them like, oh my gosh, how are you still alive? But they're just in this stupor, in shock. Pain is not the thing that's registering.

And then an hour after they've been sitting there, they kind of take in their surroundings, and it just really hits them all at once. It's just a flood — just life-ending pain, the worst thing imaginable. But there's that period where it hasn't even been processed. And alternatively, there are other situations where, as we said, there may not even be an injury. Someone is just carrying out their daily activities and yet the pain is there, and it has been amplified.

We're still learning a lot about it, but I'm glad to know that we do have some objective data to rest on. In the lab, we can compare patients who have these conditions, understand their response to pain — just like you mentioned, a stimulus that is not meant to cause pain in the normal person, when applied to someone who has central sensitization, they report pain. We can take those things in the lab and objectively measure them now. It is opening doors to a better understanding.

Whether it's mind-body therapy and other meditative-type practices — I know they do this in your field of anesthesiology, trying to control pain through meditation — some people are certainly better than others at it. But if someone is able to capture that and control it, that's huge, rather than having to rely on opioids and other things.

[27:23] Dr. Linda Bluestein: Well, I think that was also another pivotal point for me. I was at a wedding and I was sitting next to a pain psychologist, and he was talking to me about hypnosis. At that time I had a lot of pain in my back and a lot of sciatica-type pain — it turned out it was probably from the Tarlov cyst — and he suggested that I come see him formally in the office so that he could hypnotize me. When he hypnotized me, I felt no pain whatsoever. That really helped me to realize, wow, the mind is very powerful.

While we don't want to gaslight people and say, well, just think your way out of your pain, we also can make our pain worse or better by what we think and what we feel and how we feel in our nervous system. If our nervous system doesn't feel safe, that will also amplify our pain. So using those kinds of tools can be really helpful.

[28:18] Dr. Dacre Knight: Yeah. It really takes buy-in from the patient. They really have to believe that it is possible, or else it won't even be tried. And I think that's our role as providers — to counsel them carefully so we're not giving a message that it's in your head and just think your way through it. But there are resources yet to be explored that can certainly be beneficial, low cost, and very low side effects. We're talking about hypnosis or meditation — there are no side effects, only beneficial side effects. That's what it's all about.

[28:56] Dr. Linda Bluestein: And another component of education to me is helping people understand the importance of balancing the dose of information that you get. Nowadays, we really need to balance how much news we take in — because that, speaking of your nervous system being more activated, that'll do it. So do you give people advice about this? Because we can all fall into these rabbit holes where we're just reading more and more about things. I encourage people to really think about how much time they're spending doing those things and how much time they're spending doing things that they really enjoy and love, and trying to incorporate those things back in their lives. But are there any other tips when it comes to education like that, that you want people to know about?

[29:48] Dr. Dacre Knight: Well, it is important, and it's something that has to be done so carefully that it's often left in the hands of a pain psychologist. It takes time to understand the concept — it's not easily conveyed in a short visit just describing all the pain processing and the pain behaviors, because there is a lot going on.

You mentioned the news, but not only the news — social media and other avenues that can be stress-inducing and can lead someone into recapitulating pain behaviors that others are doing, or that they themselves might not even know they're doing. Pain behaviors in this sense are our activities and actions that remind someone of their condition and of the pain they've felt.

Let's use an example like ergonomics or bracing or certain things we do in our daily life to avoid pain. If they're helpful, that's fine — if you need a brace, that's fine. But as soon as you don't need those things, move them aside, because that's a reminder potentially of there being a pain limitation. Then it's almost like a self-fulfilling prophecy. The idea of having pain then begets pain. This is very tricky, and it's often better done with a pain psychologist because they can answer all the questions and go through everyone's specific situation, which is obviously unique.

But the key takeaway, to answer your question, is that there are external environmental influences on pain as well, not just things within us.

[32:03] Dr. Linda Bluestein: And I'm so glad that you mentioned about pain begets pain. Something happened with me recently — I was playing pickleball, which I never thought I could ever do, and I felt a sudden sharp pain in my quad. I probably had a small muscle tear or something like that. Fortunately it healed up pretty quickly within a few days. But the interesting thing was that everything else in my body started to hurt. All of the little lingering things — I have some things with my shoulders, my knees, my feet, all of which were managing very well — but when I got this injury to my quad, which wasn't that big of a deal, I suddenly started feeling all of these other pains in my body.

So I'm glad you said that about pain begets pain, because I think it's an important concept for people to understand. If we can affect one area of a person's pain, oftentimes that can influence how their whole body feels. So even though we might not have the ability to operate on your right knee, your left foot, your left elbow, if we don't have to — by fixing or improving the pain in one of those areas, we might actually improve the pain in the other areas.

[33:38] Dr. Dacre Knight: That's exactly right. And that's been my experience as well. I think the best approach here is having the patient direct their own adjustments to their pain behaviors and to their goals of pain relief. We can certainly provide education and support as clinicians, but the importance of that buy-in from the patient and letting them lead and direct their goals — and how to get there — I think is the most important part.

Because there certainly is a history of the paternalistic approach to medicine: well, you're having pain, so you stop doing this. But their lives and their conditions and their symptoms are so nuanced individually that we have to let them explore that themselves. We hear about coaching as part of counseling — health coaching, even career coaches do this. They let the individual identify what their own goals are and then help them shape their own direction to reach those goals. I think that's the best approach when we're talking about managing pain, because everyone's experience is so different.

[35:06] Dr. Linda Bluestein: That's a great point — letting the person guide it themselves. 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 again and enjoy the rest of the episode.

So we're back with Dr. Dacre Knight and talking about some of the elements of the MENS PMMS strategy for managing symptoms related to hypermobile EDS, HSD, and comorbidities. So next, let's talk about the letter N, which stands for nutrition. We know that nutrition is super important with these conditions, but the tricky thing is there's no one-size-fits-all approach. How do you navigate this topic?

[37:26] Dr. Dacre Knight: Well, it does come with a whole multitude of considerations based on, first, comorbidities — and certainly gastrointestinal comorbidities are high on the list as far as nutritional issues go. Malnutrition and nutrient absorption are the first place that we want to start. And then dependent on what other underlying medical issues may be present — not just comorbidities like POTS or dysautonomia or mast cell, but other things like anemia, iron deficiency. Mast cell activation would be close up there with general gastrointestinal concerns too, because those can be affected so much by the diet.

[38:20] Dr. Linda Bluestein: Yeah. And it's tricky because a lot of foods that are generally anti-inflammatory are not necessarily good for people with mast cell activation syndrome. So that can be really tricky. I do recommend when possible that people work with a dietitian. But not everyone can do that, of course.

Like you said, I'm glad you brought this up — some people are actually undernourished and underweight, and other people are really struggling with, well, I'm not actually eating that much, but I tend to retain water or feel like I'm gaining weight for no obvious reason. I've seen people write on social media that their doctor just told them they're in pain because they're fat — which is of course a terrible thing. Have you heard patients describe that when they've seen other clinicians?

Dr. Dacre Knight: Oh, of course. When we talk about pain and joint-related pain, historically some studies have shown that in things like osteoarthritis and generalized joint problems it can be influenced by weight. But the problem here, when we talk about nutrition and diet and weight, is that we have to get all of those things on the right playing field — what we do to avoid malnutrition, to avoid further joint injury and things like that.

I would also say that in my experience, the patients who really are in the worst condition and have the worst outcomes — and sometimes very tragic outcomes — are those who have severe nutritional dependency. Because once you start having worsening malnutrition, it's so hard to regain, because so many organ systems depend on all of the nutrients you can absorb from your gut. Patients can get to such a difficult state that they require feeding tubes or TPN, which is artificial nutrition through the venous system. We want to avoid that. We want to get them off that as soon as we can because it can progress quite quickly.

[40:51] Dr. Linda Bluestein: I've definitely seen that as well — fairly young patients who are on TPN, where all of their nutrition is coming in through their veins. And there's no perfect substitute for actual whole food. Then you're not using your gut, which also causes its own set of problems.

I think about food in terms of all of the wonderful things that we need to get from it — the macronutrients, the protein, carbs, and fat, but also all the micronutrients, all the different vitamins and minerals. Because what happens, at least in a lot of the patients that I see, is they feel like, okay, I think I reacted to this particular food, so I'm going to eliminate that. Then I think I reacted to a different food, I'm going to eliminate that. And next thing you know, a lot of foods have been eliminated, and potentially with that come a lot of different nutrients that are critical for maintaining the tissues in our body.

Our tissues are in a constant state of reformation, right? So we need all of those elements in order to build the best possible tissues. Even if our genetics are such that we're not building the most ideal connective tissue, we at least need to be supplying those nutrients so that we're doing the best possible job.

[42:17] Dr. Dacre Knight: That's exactly right. And I rely so heavily on my nutritionist colleagues and dietitians because of that, because that's exactly the scenario. If a stop isn't put to it, it does just progress to feeding tubes and TPN. So we need to get nutrition support involved early and quickly.

And going back to the question about weight — patients being told obesity is the cause — I would say weight and obesity is a non-issue for the vast majority of our patients with hEDS and HSD. That's to say a non-issue in the sense that it's not likely the primary contribution.

We just started a research study on BMI and hEDS and HSD and we're coming across some interesting findings, which will be published in the near future. This gets talked about a lot, and certainly now in the case where we have Ozempic and these other GLP-1 agonists that are out there and available — and may be beneficial too. So we want to be able to capitalize on those if there is some benefit for our patients, but we just want to learn more about the effect of BMI and cause and effect. It's hard to do these studies to really know the causal relationship.

For example, obesity has been attributed as the cause of joint pains. We don't think that's the case in these hypermobility disorders. We think the joint pains are influenced by so many other things related to joint instability and injuries, and all these other central sensitization effects that we're describing. But there may certainly be an effect of obesity where pain has caused deconditioning, caused less physical activity, and the GI issues have caused malnutrition — so patients are having to rely on simple carbohydrates and things that can add weight. What we're also seeing from our data is that there are subgroups of patients that fit into these areas more than others, and we're still learning more about that — patients who have pain with normal or low BMI compared to those with higher BMI, and the comparisons and differences between those groups.

[44:53] Dr. Linda Bluestein: I'm glad you brought up GLP-1 medications. There are different ones — Ozempic or semaglutide, tirzepatide, so many different ones. But these actually can be helpful for stabilizing mast cells. I never thought I would prescribe these medications, but I do prescribe them in very low dose, even for normal-weight patients, and a lot of patients have found them to be very beneficial.

I heard somebody the other day — or I saw in a group that you and I both belong to — where people were actually talking about these GLP-1 medications and saying that they were more like weight-normalizing drugs. Because in some people it actually helped them enough that they would be able to gain weight if they were underweight. Have you ever prescribed a GLP-1 to somebody who's underweight or normal weight? And if so, what was that like?

[45:46] Dr. Dacre Knight: Yeah, just very recently. And as you pointed out, these are all very new things and it is very exciting to see some of the first throughput of data on these cases. And what was it like? It's always very satisfying to see improvement, and any tool that we can find that will bring that to us, as long as it's safe. We do know there are potential side effects — GI disturbance and nausea and things like that can come with these GLP-1 agonists. But if tolerated — and it's pretty early on enough in the course that someone would know if they can tolerate it or not — and if it's providing relief to mast cell activation or cardiovascular or glucose control, then that's great.

The difference is that for normal-weight individuals, it is a small dose, or what may be called a microdose of these GLP-1 agonists. So some of the benefits can still be achieved, and the side effects may also be more easily tolerated.

[47:04] Dr. Linda Bluestein: And what about gastroparesis? Do you see that a lot in your patients? And if so, do you consider that an absolute contraindication to GLP-1, or do you just go even lower and even slower? Because, as you said, the patients who really struggle with nutrition can end up spiraling into a really bad situation quite quickly.

[47:27] Dr. Dacre Knight: Yeah. First off, I think we should say that GLP-1 agonists may certainly not be the first go-to. We may try lots of things first, and we should try other things before we do any pharmacologic intervention. We should do all that we can as far as diet and nutrition and all those standard courses. And probably in the case of most patients with hEDS and HSD, get them to a nutritionist before we consider these medications, because there are so many things that can affect the GI system and symptoms related to nutrition. A nutritionist may help. It's just like we're talking about physical therapy — maybe we can hope to avoid surgery. Same thing here: maybe a nutritionist can help us avoid medications.

So do I see a lot of gastroparesis? Yes, I see more gastroparesis in our population than I would otherwise in the general population. And I think that has been laid bare through the data and available literature. But what has also been laid bare in the literature is that gastroparesis may not be as common as we think initially. There can be symptoms of gastroparesis without meeting the clinical criteria — kind of like how we talk about POTS and dysautonomia. There are specific criteria for gastroparesis based on how long food is sitting in the stomach before it's passed on a gastric emptying study. But there can be symptoms of gastroparesis without meeting those criteria.

It's similar to how we have POTS and then we have autonomic dysfunction or orthostatic intolerance on a broader level, or we have hEDS specifically and then hypermobility spectrum disorders on a broader level. We have gastroparesis and then we have disorders of the gut-brain interaction on a broader level. Those disorders of the gut-brain interaction can include postprandial distress, which is a mimic of gastroparesis — the nausea, the bloating, the discomfort that comes with it. Functional dyspepsia. There's a very good write-up for any clinician out there in the New England Journal of Medicine just last month — a very good review by a colleague at Mayo Clinic in Arizona.

But going back to your question — yes, if those things are already present, we certainly have to be wary about GLP-1 agonists because the side effects of those are nausea primarily and gastrointestinal disturbance. That's especially the case with a full dose of Ozempic, for example, for weight loss. In cases of microdosing for mast cell activation and things like that, I think we do have a little bit more wiggle room because these are smaller doses. But yes, we are very correct to be thinking about those in anticipation of the issues a patient might have if we prescribe that.

[50:27] Dr. Linda Bluestein: I love what you said, and I want to just highlight this for a minute because I think it was really important. You pointed out that POTS has very specific criteria, which a person may or may not meet, but they are on the spectrum of dysautonomia or dysfunction of their autonomic nervous system. If they go to see a cardiologist or a neurologist and are told, well, you don't have POTS because your heart rate didn't go up by 30 beats per minute — or 40 beats per minute if you're a teenager or younger — that is such an important example.

And similarly, postprandial distress versus gastroparesis. So often people go to the doctor and are told, well, you don't have hypermobile EDS, or you don't have POTS. And the person is left thinking, oh, I'm just imagining things, or I'm just a wimp, or whatever it might be. But your point is we have very specific criteria for the diagnosis of gastroparesis or delayed gastric emptying. But on a bigger scale, we have postprandial distress, which is a very real thing. Dysautonomia is a very real thing. HSD, of course, is a very real thing.

So this is just an important concept for people to understand — just because you didn't meet the exact criteria on that given day for a certain condition that this doctor, this clinician, was evaluating you for, doesn't mean that you are not experiencing the things that you feel like you're experiencing.

I've been diagnosed with functional GI problems in the past. Fortunately, I don't have any of those problems now, but I remember when I was told — I don't think it was functional dyspepsia exactly, maybe something a little bit different, but I was having all kinds of problems with swallowing hot and cold liquids and other symptoms. And when they told me it was "functional," I thought, oh, you're saying it's in my head. I just think it's important for people to understand that we have to have very specific criteria for certain specific diagnoses, but you know your own body, you know what you're feeling, and that doesn't mean that you're not having a problem in that realm. It's just maybe you don't meet the exact criteria for something like POTS.

[52:34] Dr. Dacre Knight: It is 100%. And I would say that all of those criteria we just reviewed — none of those criteria are the symptoms of a condition that someone's feeling. If your symptoms are there, they're there, whether someone can say that or not. There's only one person who can say that. And so that's what we need to take in mind. We are here in the business of helping people. If they are telling us that they're having symptoms, then we need to help them. Whatever the criteria says.

[53:08] Dr. Linda Bluestein: Good way to put it. Okay. So we're going to talk about sleep as our last topic for today, and then we're going to come back on our next episode to discuss the last 4 letters of the MENS PMMS acronym.

Sleep is such a challenging thing when people are in pain. There's the term "painsomnia" that people use — you have pain, so it makes it hard to sleep, and then you don't sleep well, which makes your pain worse. You can end up in such a vicious cycle when it comes to sleep and sleep disorders. And it could be falling asleep, staying asleep, or waking up too early, or all three. We know that sleep apnea is more common in people with EDS and HSD. How do you approach sleep when it comes to working with your patients?

[53:54] Dr. Dacre Knight: Well, sleep is crucial and it cannot be emphasized enough. If patients are not getting restorative sleep — and I think you've described this very well in other episodes too — if we leave any one comorbidity or complication unaddressed, then we cannot expect to have full resolution of any other complication or comorbidity that may be present.

Sleep is so much complicated by the issues and symptoms of hEDS and HSD. You named some of them — sleep apnea. But just take pain as an example, which is a very obvious one. If someone is in pain and we've talked about autonomic dysfunction before — we've talked about the sympathetic and parasympathetic response and pain being a trigger for the sympathetic response, which is our fight-or-flight response — if someone is in pain and in a fight-or-flight response, by definition, you are not in a restful state. That pain can happen in the middle of the night, it can happen when you're trying to go to sleep.

We like to employ our occupational therapy colleagues in these cases where the patient is in a really bad state — anything that can help, whether it's mattresses and pillows and adjustment and sleep hygiene and so on. But it's a double-edged sword because we need to do those things to help sleep, and also in return, if sleep is not as good as it can be, those things will also be made worse — the pain, the stress response, and all of those things that we talked about. So it's crucial, is the short answer.

[55:42] Dr. Linda Bluestein: Yeah, it is crucial. So many important things happen in our brain and in our nervous system when we're sleeping. And it can be so challenging for people. Do you ever write prescriptions for some of the sleep medications? Because benzodiazepines, for example, can actually be helpful for people with mast cell activation disorder, but at the same time these are medications that can be highly addictive. Some people find them helpful for their sleep. I feel like this is a really tricky topic. Of course there are supplements — which we'll talk about next time — that can be used for helping sleep. But do you ever write for those kind of medications?

[56:23] Dr. Dacre Knight: That is interesting. And what's interesting about it is that I find most often patients are already on those medications by the time they come and see me. So usually the answer is no, I don't have to, because they're already on it. My role then is trying to get them off it if possible. It may not be possible, but if it's the first time they've seen someone knowledgeable about hEDS and HSD, then hopefully we can make progress on those sleep disruptors — whether it's pain or autonomic disturbance or this stress and sympathetic response. We have a lot of work to do usually when someone comes in, but likely they are already on those medications at that point.

[57:11] Dr. Linda Bluestein: Do you find beta blockers taken in the evening to be very helpful for people with POTS?

[57:17] Dr. Dacre Knight: Well, sure. And really anything that we can do to help POTS at all is helpful. That may be medications. It may be — we were talking about physical activity earlier — we know that physical activity from multiple studies improves sleep because it helps implement that circadian rhythm, this sleep-wake cycle that is so important for patients. And it's also important to recognize that with this physical activity, patients are active during the day.

Now, of course there may be limitations with fatigue and things like that, so we don't want to overdo it. We've got to strike a very careful balance here. But there is something called sleep inertia. This is what we develop over the day from the time we wake up until the time we go to sleep, and it's dependent on what activities we're doing during the day.

There have been discussions about napping or not napping. I would say that's still on an individual level for our population. For the general population, as a sleep doctor or sleep specialist might say, avoid naps to help improve your sleep inertia — to get to the point where you will feel more tired when the time comes to be tired. But we are complicated by lots of other things that can cause fatigue. So if napping is necessary, it's not the end of the world. We just have to go by it on an individual basis.

[59:02] Dr. Linda Bluestein: And I'm glad you brought up the circadian rhythm, because that is definitely something I see disturbed in a lot of people. They'll be going to bed at 4 in the morning or 5 in the morning and getting up in the afternoon. So instead of being asleep when it's dark out and awake when it's light out, they're almost doing the reverse. And of course there are shift workers that do that by necessity, but we know that's not good for our bodies — shift workers can have more inflammatory conditions like diabetes and obesity, heart disease, strokes, et cetera. So do you see this very often in your patients — people who have a flipped circadian cycle?

Dr. Dacre Knight: Yes, I do. I can recount a patient I saw very recently, just a couple of weeks ago, who said that she is awake all night and she sleeps during the day simply because when she's awake at night, there are fewer environmental things that she's sensitive to — whether it's sound, light, or whatever disturbances. Obviously not ideal, because yes, we have studied workers who are on the graveyard shift and we know that their long-term health issues are compromised because of that.

To answer your question, yes, I've seen it. This patient had actually just quit her job and moved back home with family because she couldn't keep up with it due to her medical issues. And then the family in the house was disruptive and bothersome, as some of our families can be. So she just decided she was better off staying awake at night. I don't recommend it, but I do understand and I can sympathize with those situations. And I outlined my goals for her — that we want to improve her medical condition so that not only can she one day get back to work, but at least get back to living on her own and living on a normal sleep-wake, day-night schedule.

[1:01:16] Dr. Linda Bluestein: Yeah. And I know there are some people who can function really well with a flipped cycle like that. And if somebody's doing great, I would probably personally just leave it alone. But of course, if they're coming to see me or coming to see you, they're probably coming because they're not doing well. If I happen to be talking to somebody socially and they're like, oh yeah, I sleep during the day and I'm awake at night — oh, okay, fine. But I think it's definitely something that can be impactful if we can make a difference with it. I had a patient once who was literally going to bed at 6:00 AM every day.

Dr. Dacre Knight: Yeah.

Dr. Linda Bluestein: So, yeah.

[1:01:55] Dr. Dacre Knight: Oh yeah, I see it. And at that point, we want to reemphasize all the good sleep hygiene principles — going to bed the same time every day, waking up the same time, getting some physical activity in, avoiding caffeinated drinks late in the day, avoiding alcoholic drinks. Don't go to bed too full or too thirsty, and avoid distractions in the bedroom. Don't use the bed for anything other than intimacy or sleep.

Our patients usually have done all of those things — just like when we encounter pain, they usually tried a lot of the run-of-the-mill things. So we have to think outside the box. But those are core principles always to keep in mind.

[1:02:39] Dr. Linda Bluestein: Definitely. I'm glad you pointed all of those out. I did an episode on sleep with Dr. Roger Schultz. He is quadruple board certified and sleep is one of his board specialties. We were talking about light and exposure to light — how you want to expose your eyes to light early in the day, as early as possible, so that you're telling your body that it's daytime. And then at night you want to avoid light. But it's like, okay, if you're avoiding screens and avoiding light, that means you're not even reading with a light on. You obviously have to have some light, so.

[1:03:12] Dr. Dacre Knight: Yeah, it's hard to take these broad rules into specific context. I have trouble with it myself.

[1:03:16] Dr. Linda Bluestein: Yep. Exactly. Okay. Well, thank you so much for this great conversation. We will cover the last 4 letters of the acronym when we talk next. And in the meantime, I want to remind everyone that they can visit bendybodiespodcast.com to submit their questions, because future conversations with Dr. Knight will be revolving around what you ask us about. So we will be covering some of your most frequently asked questions in some of the future episodes.

And in the meantime, we will share a hypermobility hack with you. Do you have one for us, Dr. Knight, or do you want me to share one?

[1:03:56] Dr. Dacre Knight: Well, we covered a lot of ground today, which is excellent. A lot to be pulled from it. I think it's come up in a couple of scenarios — we were just talking about sleep, for example, and physical activity, and we started the episode talking about physical therapy. A little bit is better than nothing. As you said, movement is good. And as I like to say — I've stolen this from my orthopedist — this is my hack: motion is lotion. So keep those joints moving as you can, if you can.

[1:04:27] Dr. Linda Bluestein: Yeah, definitely. Because we also need load on our tissues in order to get stronger. Yes, motion is lotion and we need to keep moving if we want to move. As my Mayo Clinic pain doctor said to me many years ago, if you want to move, you have to keep moving. And he was absolutely right about that.

Okay, great. So that is a wrap for this episode. Dr. Knight, thank you so much for chatting with me again today, coming from the UVA EDS and Hypermobility Disorders Center. Are things going well there so far?

[1:05:03] Dr. Dacre Knight: Oh, they're buzzing along, as active as ever. And it's great — that's what we're here for. We're here to help as many people as we can. We've just got our IRB protocol launched, and so there are a lot of exciting things to do. We've got our symposium coming up in April. We'll share more about the Bendy Bodies Podcast at that symposium. So yeah, a lot of activity here in Charlottesville, Virginia.

[1:05:31] Dr. Linda Bluestein: Fantastic. So we will have links to the symposium to get more information about that, and also the clinic, how you can sign up to be on the waitlist, et cetera, and more information about Dr. Knight. Well, thank you again for chatting with me today. I know that you're very, very busy and I always enjoy our conversations.

[1:05:55] Dr. Dacre Knight: My pleasure, Dr. Bluestein. I enjoyed it very much.

[1:06:27] Dr. Linda Bluestein: 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. 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. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, 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.

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