Validation and Empowerment: What EDS Patients Need to Know | Office Hours

[00:30] Dr. Linda Bluestein: Everything is connected to everything else, and if you're having poor sleep, that is going to impact everything. That's going to negatively impact how your immune system functions, how your connective tissue functions, your muscles, your gut's not going to work as well, your parasympathetic and sympathetic nervous system is not going to work as well. So really working on improving sleep is so important.
[01:05] Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes dedicated to helping you navigate hypermobility and live your best life. Today's episode was inspired by listeners' questions. One of the questions was about an introductory series, so I'm going to share some things today that I want all patients to know. Another listener asked for how to find a doctor for their teen that has possible hypermobile EDS or HSD, and a grandmother asked about addressing POTS that might be driven by mast cell activation syndrome.
[01:38] I am also excited to be joined today by one of the producers from Human Content, Aron, who is even wearing his VIP Bendy Bodies merch. Hello Aron, how are you?

[01:48] Aron: I'm doing great. How are you, Dr. Bluestein?

[01:51] Dr. Linda Bluestein: I am doing great as well. I have my shirt, but I'm holding it on my lap.

[01:56] Aron: It's okay.

[01:57] Dr. Linda Bluestein: I'm not wearing it at the moment, but that allows me actually to show people what a VIP shirt looks like for people watching on YouTube.

[02:06] Aron: By the way, can I just say my Bendy Bodies shirt is one of a kind today because mine is ice cold. I just took it out of the freezer.

[02:15] Dr. Linda Bluestein: What?

[02:17] Aron: Hear me out.

[02:18] Dr. Linda Bluestein: Yes.

[02:19] Aron: I know I sound crazy. And I'm still going to sound crazy when I explain why, but I'll sound less crazy. That's the goal. You can tell me. All right. So we're taping today and again, thrilled to be on with you again. Apparently people didn't hate me last time. That's great. Very affirming.

[02:36] Dr. Linda Bluestein: They loved you. Yes.

[02:36] Aron: Very affirming. Great. I can carry that with me. But I realized this morning that the load of laundry — I'm sure we've all been there — I did my laundry last night and I was like, okay, I'll put it in the dryer this morning. And I start working all day and then suddenly I'm like, oh wait, that load of laundry has this shirt in it. So I load up the laundry this morning and I run it, because I loaded it last night but not run it. Sorry, that's how it was. And so I pull out this soaking wet, cold, dripping wet Bendy Bodies shirt about 40 minutes ago. And I'm like, you know what? You're going in. I wring it out in the sink, throw it in the dryer, and 5 minutes before this, it's nice and dry, but it is so hot and we're in a heat wave right now in California. And so I threw it in the freezer and the moment it was time to record, I pulled it out of the freezer. So I have a nice icy shirt on and I feel crazy, but hopefully I sound less crazy.

[03:34] Dr. Linda Bluestein: That is hilarious. Well, you know what's funny about that? A lot of people who listen to this show have a lot of problems with temperature tolerance — they don't tolerate heat, they don't tolerate cold. So that's a new hack. If you take something out of the dryer and it's super toasty, sticking it in the freezer is a great idea.

[03:58] Aron: That sounds like something a non-neurodivergent person would have done. No, mine was—

[04:02] Dr. Linda Bluestein: Yeah, I love it. That's awesome. Okay. So excited to have this conversation with you today, and be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go.
Okay, Aron, I'm so excited to have this conversation with you. So today we are going to be talking about things that I wish every patient knew. The goals of this conversation are to empower people, to validate them, reduce overwhelm, and provide actionable starting points. So first, we're going to talk about the big thing that so many people experience. And I don't know if you've heard people say this from producing the show and/or seeing the comments, but people are constantly told that they're imagining things — or that they're making up their symptoms. Have you seen that?

[05:00] Aron: Yes.

[05:01] Dr. Linda Bluestein: And it's so, so frustrating for people. There are such common symptom patterns that we see that include pain, fatigue, brain fog, symptoms of dysautonomia like dizziness, temperature intolerance, like we just talked about, and mast cell activation syndrome. And symptoms can be just all over the place and people can be struggling with so many symptoms at so many different points in time. And people can start to feel like, maybe I am just crazy, because I go to the doctor and I go to this doctor and I go to that doctor and none of them know what's wrong with me. So maybe it's just me. Maybe I'm just crazy.

[05:30] Aron: It's interesting. We notice people that excel because of hypermobility — differentiators, I'll say. I'm no doctor, I'm a podcast producer, so I'm going to use my lingo. But like, you look at famous musicians — wasn't it Rachmaninoff or someone? There are famous musicians who have very wide hands for playing, and famous violin players and stuff. Sure, they have hypermobility in their joints so they can do exceptional things and everyone celebrates it and no one talks about it. So it's interesting that it's dismissed if there's something about you that's causing the problems. But for me it feels validating. It's like, okay, cool — why should I feel like I'm imagining it and I'm crazy? Because it's a bad thing for me when, if it's a good thing for people, they lean into it and celebrate it so easily. I think both sides of the coin should be equally valid.

[06:26] Dr. Linda Bluestein: Yeah, I think that's such a great point. And people speculate all the time about different people — Elvis Presley, did he have EDS? Michael Jackson? Michael Phelps? Because there are some signs that are really visible. So it's kind of ironic because at the same time that we say these are invisible illnesses, they're also highly visible, because you can see people's joint range of motion often when you're watching them on TV — if you're watching the Olympics or something. So it's really fascinating. Unless you actually take a goniometer, which is that device that kind of looks like a math tool that you can use to measure joint range of motion, it's hard to estimate exactly the degrees of hyperextension, for example, in someone's knees. But when it's extreme, you can really tell — oh, that person is really hypermobile.

[07:14] Aron: And everything's so interconnected, right? Like, isn't there the interstitium or whatever? Like our whole body has this network of membranes where everything inflames and relates to each other. It's all just this domino system where there's no benefit in wondering if you're crazy about it or imagining it. It's so valid that there's a million variables happening — if something's not working for you, there's probably a mystery to look into. You're not crazy. You're valid. Even if it feels like it's psychosomatic, it stems from somewhere, right? It's all comorbid. So I don't know why you would gaslight yourself.

[07:53] Dr. Linda Bluestein: Yeah. But a lot of us do, including myself. I did that for sure before I was diagnosed. I thought, oh, well, if the doctor tells me that there's nothing wrong with me, then they must be right and I must be wrong. So I definitely gaslit myself for sure.

[08:04] Aron: And I feel like — correct me if I'm wrong — but I feel like a lot of women also have complained about the fact that they feel like doctors are more predisposed to dismiss their physiological complaints.

[08:22] Dr. Linda Bluestein: I definitely think that's true. And there are certain other categories of people — like I think moms will get labeled as, you know, Munchausen by proxy, or like intentionally making their kids sick. They'll get labeled with that more easily than males do. So yeah, it's really tough. And only you know what your body feels like. Nobody else knows what you feel in your body.
[08:44] We're going to talk more later about how to think of the sensations that you have in your body and how to present them to your doctor in a way that you're more likely to get a diagnosis, and also not to get overly attached to labels, because sometimes that can lead to what's called a fixation error. So I like to say pain is the body's way of asking for change. It might be that you're doing some small thing in your everyday life that, the pain is telling you you need to do differently. Or maybe the pain is a sign of some big problem. And just because a person has EDS or HSD doesn't mean that they can't have other problems, right? You could have appendicitis or some other thing going on even though you have those conditions. Or maybe the pain is just telling you that your nervous system needs some adjustment because you have what's called central sensitization, and we'll talk more about that later. But figuring that out for myself — that that was going on in my own body — really helped me a lot.
[09:40] Okay, so I mentioned central sensitization and why focusing just on a diagnosis can be really challenging and can actually stall progress. Sometimes I have had patients where they're talking about their CSF leak headache or their migraine headache. And even if they've been diagnosed with migraine headache, they may or may not actually have migraine headache. And so if they're using that term over and over again, it is very possible that people won't look deeper and see — oh well, is their headache from temporomandibular dysfunction? Is it from craniocervical instability? Is it from a CSF leak? Is it from elevated intracranial pressure? There are all these other things in people with EDS and HSD that can cause headache.
[10:24] So we want to make sure that when we are talking to our doctors, we are explaining what our symptoms are, and ideally that we have a document that's organized. Now you have all these wonderful AI tools that you can use to help you organize the information. You could even have it organized in several different ways. So bringing your information to your doctor in several different formats can be really helpful. You can go to whatever your favorite AI platform is, put in the symptoms that you have, the information that you have, and ask it to organize it by chronology. You can have it organized by systems — so all the neurologic things are together, all of the gastrointestinal things are together, all of the pain problems. Having different documents like that can be really helpful. You can bring several different things to your appointment and say, I have several different documents, I'm not sure which ones you want to see. Having those prepared can be super helpful. I really like having those documents anyway.

[11:22] Aron: Yeah. When just doing a little bit of armchair research before this episode, I was looking into some of the unknown unknowns of what can cause problems for people who have EDS, especially someone who doesn't know much about it. I started learning about the glymphatic system — like how our brain does its own washing and cleans off the myelin sheaths on neurons, kind of like your brain's dishwasher while you're sleeping. I don't know if that's oversimplifying it, but it's just so interesting how pervasive EDS is on so many different levels. Again, this is me being outside of it and you're like, yeah, of course, Aron. But I didn't realize that it even extends to hypermobility and floppiness in the piping of that drainage system, and that's why you have fatigue and sleep issues and issues with how collagen and vitamin C are distributed from it all.
[12:34] I can see how it starts to become such an overwhelming system — you really do need to make sure you are communicating and being transparent and vulnerable with your practitioner, because it is so hard to keep track of all the different areas that could be playing into why you are feeling X, Y, and Z. As I've started learning about it more, I've been surprised and a little overwhelmed by how many things practitioners have to keep track of to sleuth it out.

[13:12] Dr. Linda Bluestein: Yeah, sleuth it out is exactly what it is. And the thing is, we're taught in medical school about so many different systems, but we're not taught about the interconnectedness of all of these systems. So many people think that if somebody has joint hypermobility or a connective tissue disorder, that's going to affect their joints — but they don't realize that it's going to affect so many other aspects of their body. Maybe they'll be aware that they could have stretchy skin or something like that, but they don't think about, like you're saying, how you can have fatigue from so many different causes. It impacts your sleep, impacts your ability to process food through your digestive tract. Your connective tissue is everywhere. Literally, connective tissue disorders like the Ehlers-Danlos syndromes can affect everything in your body.

[14:00] Aron: Yeah. It also — I guess I'm just thinking about it from an emotional standpoint again, because I don't experience it — I would imagine it's probably good to also be vulnerable with your loved ones and close ones with it. That you don't always know what is going on with you and you're figuring it out. And please be patient with me as I am trying to figure this out too, but I'm not always at 100%. Using that vulnerability probably helps you feel less self-conscious about it because you've gotten in front of it. I'm curious what you think about that, but I'd imagine that's a big aspect of working with patients too — that non-physiological side of it.

[14:41] Dr. Linda Bluestein: Yeah, definitely. And definitely that interaction with family members, because it's really, really hard — if you're in a couple relationship, or if you have parents or you're dealing with a child or whatever it might be. When there's other people involved, it can be very, very challenging to try to figure out, as the other person, how do I support them? And we're going to talk about that in a future episode. How do I support this person who's suffering from all these symptoms, but at the same time they have their own life, their own things that they're dealing with?
[15:09] So I think it is important to be vulnerable and honest and say, you know, I don't want to be a burden. I feel like I have all this stuff that I'm dealing with, and I'm trying my best to manage my symptoms, but it's overwhelming. Just sharing how you feel — I think that's a great idea. That's a great point.

[15:26] Aron: Dr. Bluestein, I know you have before, but I'd imagine the more we on this show talk about the family dynamics and interpersonal dynamics in a family unit — and I know you're not a marriage and family therapist — I'd imagine that's just such a massive world in the EDS community. Figuring out how to navigate that and make sure that you self-advocate while also recognizing it's hard for those around you, and that whole dynamic?

[15:53] Dr. Linda Bluestein: Yeah, it's really, really hard. And I see the full spectrum. I see couples and families that have great relationships and they're able to navigate these things pretty well. And I see other couples where it's really challenging. The patient might have a lot of needs and the spouse or partner will be really supportive for a number of years, but over time they start to get resentful and/or they start to feel more like a caregiver and less like a partner.

[16:25] Aron: Which is valid, right? You can't help it. It's valid.

[16:28] Dr. Linda Bluestein: Yeah, exactly. And I think for everyone, acknowledging what their needs are is really important. Vulnerability and communication is so important. And the same thing, you can apply that into the relationship with your doctor and your doctor's appointments. I tell people all the time: try to describe and feel what you're feeling in your body, but try to be more objective about it rather than anxious. I'm a very anxious person, so I have to really work on this — as I know that you know after working with me now for a couple of years. Once you start getting into that anxious mindset, it makes it harder to interpret your symptoms and it makes it harder to know what's connected to what. And the other thing is, if you're in a doctor's appointment and you're leaning more into the anxiety and less into that storytelling, reporter-type mindset, then what ends up happening is the other person is going to focus on your anxiety. They're going to feel your anxiety. Does that make sense?

[17:30] Aron: Yeah. And as a practitioner, I imagine you can't help it, but sometimes it makes you need to put up a bit more of an emotional wall because of all the people you work with. And it might actually work to your own detriment as the patient to get too anxious, because your practitioner then for their own self-care has to step back a little emotionally and not get pulled into that vibe — because if they spend 40 minutes with you on that, and then you're the next patient and they bring that energy, that doesn't help anyone.
[17:56] But at the same time, I would imagine it's so hard for anyone when they're already feeling — pardon me, but if you feel like crap, it's probably hard to also want to be emotionally vulnerable right now when you already feel guilty about the fact that you couldn't go run these errands today that you needed to do for your family. You're already needing an extra nap today. That's already enough emotional and physical baggage. It probably feels counterintuitive to somebody.

[18:40] Dr. Linda Bluestein: Yeah. And it's really, really hard because most people want to be doing a lot more than they can. They want to be more active. They want to be contributing more to their household. They don't want to be going to the doctor. They don't want to be sitting in the doctor's office. They don't want to be told, oh well, now I have to not only go to the doctor's appointment, but I have to do it in a certain way. And I'm not saying that's right or that's fair.
[19:03] But you're right — the doctor will be seeing sometimes 30 or 40 patients in a day. They're going to be going into room after room after room. And if when they walk in there what they're really feeling is this incredible amount of anxiety, it's going to be hard for them not to attribute most of the things to the anxiety, even though there are all these physical symptoms that are probably driving that anxiety.

[19:36] Aron: So correct me if I'm wrong, then the takeaway for the patient is — it's just like going to the gym or exercising or anything else you do — it's not about not bringing that to your practitioner, but it's about exercising that muscle. Being vulnerable with your family, being vulnerable with your practitioner and figuring out how to balance that so that you're being considerate and constructive for them and for yourself. It's just a journey, but not engaging in it sounds like the bigger danger. Because then you're not addressing half of the human experience — the emotional side of it. Is that fair to say as a podcast producer, not a doctor?

[20:26] Dr. Linda Bluestein: Yeah, no, I agree. It's just really hard because ideally, the doctor would say, okay, so you're telling me that you have these symptoms, and I'm also sensing that you have anxiety about it. And ideally, they would talk to you about your physical symptoms and then also talk to you about your anxiety. But in reality, they might have 7 minutes, they might have 10 minutes. So it's going to be easier for them to focus on what they feel like is important. So that's why I think your point is excellent about the practice. Plan ahead, really think about what you want to say, really think about what you want to focus on, so that you are most likely to get what it is that you want out of that appointment.

[21:05] Aron: Yeah. Well, beyond the aspects of what maybe needs to be another mental health focus, it sounds like based on where you and I were headed on this — do you have other patient tips to talk about beyond the emotional side of things?

[21:24] Dr. Linda Bluestein: Well, I think another important thing for people to realize is that sometimes what starts the problem is not the thing that perpetuates the problem. So for example, if we use head pain as an example — it could be that you start out having migraines or cluster headaches or sinus headaches or something like that, and over time something else develops. You still have head pain, and maybe you can't really distinguish one type of headache from the other, although sometimes people can. But sometimes a different type of head pain will take over, and maybe now the head pain is from cervical instability or a Chiari malformation or a CSF leak or something like that. So keep in mind that what starts the problem and what perpetuates the problem might be two different things.
[22:06] I've seen people before where they're on tons and tons of supplements — like 20, 30 supplements — and then I start looking up some of the supplements they're on, because some of them I'm not familiar with, and some of the symptoms that they're describing can be related to those supplements. It's like, well, maybe you're having a lot of tingling because you're taking so much B12, way too much B12. And maybe we need to back off, because a lot of times people like to prescribe, but they don't like to deprescribe, they don't like to stop things. So I have had lots of patients where I've said, let's stop a bunch of these supplements and let's see what's going on.
[22:41] And this is where this comes into what started the problem, because oftentimes they'll say, well, I had this problem before I started the supplement. Well, something else could have been going on at that time. It could have been related to a nerve that was more transiently pinched, and now you've started these supplements, and the supplements are making it seem like the symptom is continuing, but it's actually a different cause. So I think that sometimes pain problems are like peeling an onion. You kind of have to deal with it in layers. And once you deal with the first layer, now you can deal with the second layer. Especially people with EDS or Ehlers-Danlos syndromes and connective tissue disorders — we often have so many different symptoms, so many different problems going on, that we just have to address one layer at a time or else we get really overwhelmed.

[23:28] Aron: Yeah. And I remember that was originally the script for Shrek when he talked about ogres being like onions you peel. And I remember that didn't work with the audience in the test screenings and they went back to the ogre thing. But sorry, that's just a random trivia fact.

[23:41] Dr. Linda Bluestein: Oh, that's funny. Never would have guessed that.
[23:46] So I just realized that I've been using the terms EDS and HSD, and I haven't really defined those. Let's explain what those are before we take a break and address some listener questions. The Ehlers-Danlos syndromes are a group of connective tissue disorders, of which there are multiple subtypes that are rare or ultra-rare — like literally a handful of people in the entire world have some of those subtypes. But the hypermobile type is actually much, much more common than all the other subtypes combined. We think that probably out of all the people who have EDS, probably 80 to 90 or even more percent have hypermobile EDS. And hypermobile EDS, unfortunately, is the only type that does not have a known genetic marker. So we don't have a biomarker yet for hypermobile EDS. You can't just go to a lab, get a test, and say, oh, you have hypermobile EDS.
[24:40] So I get this question all the time about genetic testing. If I don't suspect a different type of EDS or another connective tissue disorder like Loeys-Dietz syndrome or Marfan syndrome or something like that, then genetic testing is not going to confirm hypermobile EDS. And oftentimes that information gets used almost against somebody, like, oh, see, your test was negative.
[24:57] And hypermobility spectrum disorders is kind of the catch-all term for: you have joint hypermobility, which means your joints have greater than expected range of motion, and you have symptoms related to joint hypermobility — which again could include pain, fatigue, GI symptoms, nausea, vomiting, gastric reflux, joint subluxations, dislocations, stretchy skin, all kinds of things — but you don't have enough things that meet the criteria for hypermobile EDS or another condition to explain your symptoms. So I just wanted to define HSD and hypermobile EDS and throw that in there.

[25:44] Aron: Yeah, I think that helps. And I like that you're holding our hands and introducing key terms, and hopefully you do it throughout the rest of the series so that we're getting core contained terms and also understanding that it is a broader abstract discussion. I can't speak for others listening, but I think that's very helpful. Thank you.

[26:13] Dr. Linda Bluestein: And it's hard because I feel like sometimes I'll run into people who really understand some of the nuanced, complex topics, but this core aspect of it sometimes gets lost in the shuffle. So okay, let's talk a little bit before we take the break about some of the most overlooked contributors to pain and other symptoms related to hypermobile EDS and HSD, because I feel like a lot of people don't realize this, and they think, oh, but I need to get to a doctor and I need to get a diagnosis.
[26:46] Yes, a diagnosis is super important, and whether you have a diagnosis of HSD or hypermobile EDS, we're going to treat those basically the same. The treatment plan is basically the same for both of those conditions. And things that we want to address include things like sleep disruption. It's interesting that you mentioned lymphatics, because you and I didn't plan this — I mean, we communicated a tiny little bit in the show notes.

[27:10] Aron: Oh, we vibed.

[27:10] Dr. Linda Bluestein: We vibed. Because it is — everything is connected to everything else. And if you're having poor sleep, that is going to impact everything. That's going to negatively impact how your immune system functions, how your connective tissue functions, your muscles. Your gut's not going to work as well. Your parasympathetic and sympathetic nervous system is not going to work as well. So really working on improving sleep is so important.
[27:43] Also, as I just mentioned, the parasympathetic and sympathetic nervous system. I think about our nervous system like a teeter-totter. A lot of people who have EDS are in sympathetic overdrive. So the sympathetic nervous system is the fight, flight, or freeze part of your nervous system — like when you almost get in a car accident and you feel your heart racing. That's your sympathetic nervous system. And the parasympathetic nervous system is what we call the rest, digest, and restore nervous system. So when people have EDS, oftentimes they may or may not have POTS, but they might have dysfunction of their autonomic nervous system, and their sympathetic nervous system is on overdrive — which of course is going to cause more anxiety, more problems with sleep, and all kinds of other issues.
[28:28] So definitely working on the vagus nerve, which is the biggest and most important nerve for the parasympathetic nervous system, and also super important for your gut — working on getting your parasympathetic nervous system more active can really make a difference. Does that make sense, Aron?

[28:48] Aron: Yeah, it does. It also — again, I go off of what's front of mind for me — both me and Rob, two of your producers, have sleep apnea and we talk about it a lot. It makes me wonder: is that common? Because you're talking about sleep issues and you're talking about joint and myofascial issues. And I know that it's tied to your jaw and your mouth muscles relaxing when you sleep and falling back to close your windpipe — I know very clinical terminology here. Do you see a correlation where, if you have EDS or anything like it, you might also want to get checked for that if you're having sleep issues?

[29:32] Dr. Linda Bluestein: Yes. You said you're not a doctor, but maybe medical school is in your future, because you're absolutely right. It's never too late.

[29:44] Aron: I'd be an old man when I finish.

[29:46] Dr. Linda Bluestein: Yeah. Because you're absolutely right. The tissues in your body are going to be more stretchy, more extensible. And so yes, we see young females who normally you would never even think could have sleep apnea, but they do. So we test a lot of people for sleep apnea because it is so much more common in people with EDS and HSD than it is in the general population. So yes, that's a super important thing to look for.
[30:15] And it's a little bit trickier to treat, because if somebody does come back with sleep apnea, just even wearing the CPAP mask can activate their mast cells. They can end up with a rash around the mask. There are all kinds of oral devices, but if you already have jaw problems, that can make your jaw pain worse. So it could be really tricky to treat sleep apnea — and if somebody's already normal weight or maybe even underweight, so they don't have weight to lose, it could be really tricky.

[30:44] Aron: Yeah. Well, ladies out there listening, I just went through it all and got diagnosed and got it all sorted. You can look chic and in vogue and wear all the appliances. They are minimalistic and a little alluring. So don't be afraid to get tested.

[31:00] Dr. Linda Bluestein: Yeah, absolutely. Don't be afraid to get tested, because even though I said it can be difficult to treat, it's super important information to have. And another thing I should point out is people who have Chiari malformation can also have central sleep apnea — sleep apnea that's driven by the central drive for breathing, in addition to obstructive sleep apnea, which is what you're talking about where you get obstruction. So you can actually have both. People can have both obstructive and central sleep apnea.

[31:30] Aron: Yeah. My understanding with central sleep apnea is it's also tied to how your body regulates CO2 and oxygen and everything. I just learned all about how your brain can just tell you to stop breathing even if there's nothing physiologically occurring. So again, it's all so complicated, which is why it's good we have doctors like you who know this, because it can feel overwhelming as the patient.

[31:52] Dr. Linda Bluestein: It can feel overwhelming, but this is also why so many of us are so reluctant to prescribe sedatives for sleep — because if you're taking away somebody's drive to breathe, when you have sleep apnea and you stop breathing, your oxygen saturation goes down. It's either your oxygen going down or your carbon dioxide going up that's going to cause you to start breathing again. And if you give someone with sleep apnea sedatives, then your oxygen is going to have to go even lower and/or your CO2 is going to have to go even higher before you start breathing again. So your oxygen saturation is going to go down even lower than if you didn't have those sedatives. Your brain is getting deprived of oxygen even more. So yeah, it's really important.
[32:37] And we know that people with EDS and HSD are more prone to neuroinflammation — inflammation in the nervous system — and they're also more prone to central sensitization, which is the processing of pain signals. When I realized that I had central sensitization, this was such a huge light bulb moment for me. You've probably heard me talk about this on other episodes of this show, but when I learned about central sensitization, I was already working as an anesthesiologist. I had already had my spine surgery and I was in so much pain. I had gone back to work but was really, really struggling — still having to wear lead sometimes, having a really tough time. And I came across this lecture by Dr. Dan Clauw, who's like the world's expert on central sensitization. And I was like, oh my gosh, that's what's happened to me. Because I knew I couldn't tolerate bright lights anymore, and I knew that my nervous system was so sensitive to everything — smells, lights, flashing lights. If I was driving, or if I would go to a show and there'd be flashing lights, I felt like I was going to have a seizure. I never did. But so, a lot of people experience this, and it's really important to know that it's very, very common with EDS and HSD.
[33:47] And if you think about it, it makes sense. If you have joints that are constantly not in quite the exact right position, or you're constantly tweaking your tendons and your ligaments a little bit, and you're having all of this input into your pain nociceptive system, it actually is going to get sensitized, because it's kind of a protective thing. If you have an injury, you don't want to get another injury. Back in the day, if you were already injured and you couldn't run away from the tiger, now you're really going to be in trouble. So it's probably somewhat of an evolutionary thing. Have you heard about that before?

[34:30] Aron: No, that's fascinating.

[34:33] Dr. Linda Bluestein: It's super interesting. And I emailed one of my colleagues when I was writing my very first paper — before I even had my clinic — and I emailed them and asked, what percentage of your patients do you think have central sensitization? It was part of a multi-paragraph email. And they wrote back and they literally just wrote 4 characters: 100%.

[34:57] Aron: Yeah.

[34:58] Dr. Linda Bluestein: That was the reply.

[35:00] Aron: Again, for me sitting here, it just makes me want to encourage everyone to remember: whoever your practitioner is, make sure you have someone like Dr. B here who is passionate about it. She didn't ask me to say this. But it's just — I'm fortunate for the practitioners I've had who do this too. You want someone who's passionate about this and thinks about it and is engaged with you on it.

[35:23] Dr. Linda Bluestein: You want someone who's curious. I've heard people say, well, I don't want to go back to that doctor because they didn't even know how to pronounce Ehlers-Danlos. Well, I can tell you there are people who can pronounce Ehlers-Danlos just fine, but they're jerks. And there are other people who can't pronounce it at all and they're super compassionate and they want to help you. And if you go to somebody and they're curious and they want to help, that's almost more important, because they're going to refer you to the right people, they're going to learn over time. And you're going to have to form a team, right? That's the other really important part of this — you're going to have to form a team in order to get the things that you need.

[36:06] Aron: I'm ready for you to rip the top of your shirt and be like, "And that's why this Saturday I'm going to face off with these folks at the arena" — the most dorky doctor throwdown?

[36:21] Dr. Linda Bluestein: Oh, that's hilarious. That would be fun. Well, it's just hard because I can't see everyone. And I love doing this podcast. I love educating people. I love educating the masses because it's so important for people to learn about these conditions and advocate for themselves and understand what's happening inside their own body so that they can really get their best care and feel their best.
[36:48] And I do love seeing patients and I love coaching clients as well. And at the end, we're going to talk about what the difference is. But at the end of the day, people are going to have to go to other people, right? So learning how to navigate those relationships is so important.
[37:02] And people tend to either boom-and-bust — they often get super deconditioned, or they might be overexerting themselves. So learning to pace is really important. Learning to use your nutrition to get these key ingredients to build your tissues in the proper way is so important, because everything that you eat changes the chemistry in your body. So in general, especially people with active mast cells — mast cells that degranulate really easily — we want to avoid things like dyes and processed and refined sugar. We want to do a lot of swaps, like Dr. Stevens discussed in episode 187 from the UVA EDS clinic.

[37:38] Aron: Well, in the spirit of being flexible in self-care and rest, should we take a break?

[37:45] Dr. Linda Bluestein: Yeah, we probably should. We'll take a break and we'll be right back.
[39:38] Okay, we are back with Aron. And Aron, I think you have a couple of listener questions you're going to read to us.

[39:45] Aron: All right. Our first question today is from Kimberly. And I know last time I tried to do voices, but I'm not going to do that today. All right. "Your podcast has been a lifesaver. I found it at just the right time to help my 15-year-old daughter. I believe, based on research I have done, that she may have EDS, probably hEDS. She's hypermobile, just not officially diagnosed. We live in Alaska and I'm struggling to find a doctor who will evaluate her for EDS. I feel like the diagnosis is important for our path forward and for setting up accommodations at school. Do you know of any providers I should contact, any resources to help us get her diagnosed?"

[40:23] Dr. Linda Bluestein: So I really love this question because it's such a common question. I don't know anyone in Alaska that I can recommend, unfortunately. However, I do have a couple of resources that I really want to share with people. One is from the Dysautonomia Support Network, and their website is dysautonomiasupport.org. They have a healthcare provider map — we will have the link in the show notes — and they compiled this from patient recommendations. I really love this because although they didn't vet the list — they're not going around and checking out all the doctors and nurse practitioners and PAs and physical therapists and occupational therapists and all the different kinds of healthcare providers that are on the map — they are compiling these from patient recommendations, so at least people had to be added in that way. I really love that resource. I think it's a really great resource.
The Ehlers-Danlos Society also has a healthcare professionals page, which we will also include in the show notes. They do theirs a little bit differently. The way theirs works is somebody has to submit their own name. So people are submitting their own name, as compared to the other one where patients are recommending them. That's an important distinction, because I've had a number of people say to me, oh, I went to somebody who was trained by the EDS Society — and it's like, well, if you saw their name on that Society professional page, that doesn't mean they were trained by the Society. The Society does offer something called the ECHO program, which is really fantastic and great education. Any healthcare professionals listening right now who are interested to learn more — I highly recommend that you sign up for the Ehlers-Danlos Society ECHO program. However, it's important for patients to know that a lot of the people on that Society professional page have done the ECHO program, but not everybody. So that's just another important thing.
[42:12] And also I would encourage people to do the coaching with Rebecca Gluck, who is the physician assistant I recently hired for Bendy Bodies. She's really doing a fantastic job. She has so much experience — she worked with Dr. Claire Francomano for a couple of years in her genetics clinic, and she's been working for the EDS Society for quite a few years on their helpline. So she has a lot of experience. She's talked to many, many people with EDS and HSD. And so that's a great resource as well.

[42:41] Aron: You know, it gets me thinking also about how her daughter — let me see — she says she's 15. Yeah. I dug into before we recorded this was the idea of growing pains, and how I didn't know this. Yeah — that term was coined in 1823.

[43:03] Dr. Linda Bluestein: Oh, wow.

[43:04] Aron: Yeah. So you take it as valid as you do back then with icepick lobotomies, right? And all the other crazy things they were doing. And there was that dismissal of — for women — hysteria, right? It just goes into the bucket with growing pains of, oh, we don't know what it is. Let's just call it this one blanket thing and just move on. It's interesting that there definitely seems to be this — we were talking earlier about how a lot of diagnoses seem to not be taken seriously for adult women. It sounds like this growing pains idea has drifted far enough out into children and teenagers too, that we're subconsciously wired to think that the complaints of teenagers for this stuff are not to be hyper-critically sussed out.

[43:04] Dr. Linda Bluestein: Yeah, no, that's a fair point. It's ironic because this question came from somebody different from this other person that I saw in coaching last week, but their stories are like identical. I know very little about this person who sent in the question; I know a lot about the person I saw in coaching last week, but they're both 15, they both are getting this neglect — "No, you're fine. There's nothing wrong with you" — which is a story that we hear over and over and over again. And I feel like most pediatricians or family doctors probably know how to do a few basic things, and if those things come back negative, they say, "You're fine," instead of saying, "Well, the tests that I've done so far haven't shown anything, so I don't have a good explanation of what's going on with you, but here are some other suggestions."
[44:53] It's unfortunate that the default is to be like, oh, so you must be crazy. And "unfortunate" is the understatement of the decade.

[45:02] Aron: Yeah. It feels like the dismissal of youthful issues — either being phases or just temporarily passing — is a recurring theme. And I think it ties us — here's your segue — I think it ties us actually into the next question too.

[45:03] Dr. Linda Bluestein: Yeah.

[45:19] Aron: You want me to read that?

[45:20] Dr. Linda Bluestein: Yes, please.

[45:21] Aron: All right. This one is from Margaret, who says: "Our teenage granddaughter, who I believe has MCAS as well as hypermobility, has just been told she may have teenage dysautonomia. The brochure from BC Children's Hospital reads exactly like the symptoms of MCAS. The brochure suggests things like exercise, nutrition — no addressing of food sensitivities — and other lifestyle changes. It suggests it should pass in 5 to 6 years. Could you please do a blog post on it? We are awaiting her genetic testing as I, as her grandmother, test to have two variants relating to classical EDS. Thank you for your wisdom." Five to 6 years — is that right?

[46:02] Dr. Linda Bluestein: Yeah. With three exclamation points at the end of that. And totally get this — it's ridiculous. Oh, so we should just wait 5 to 6 years? This is a critical time of this person's life. And that's why I love, love, love getting to see teenagers. I love it when parents bring in their teenage kids because they have an entire lifetime ahead of them. And if we can get them feeling better and more active and more engaged and back with their friends, it changes their entire trajectory. Instead of being disabled when they're 20, hopefully they're going to be in school or working or doing something that they enjoy. So I love getting to see kids at this stage of life and at this stage of their conditions because it can make all the difference in the world.
[46:47] So I know this person asked specifically about writing a blog post. I did want to share 3 blog posts with this person that I think they would be interested in, and we will link all of those in the show notes. MCAS or mast cell activation and dysautonomia are in the title of all 3. We're just going to put the links in the show notes so you can check those out. But I will also plan on another blog post because this is a very important question, and it leads perfectly into our hypermobility hack for the day.

[47:16] Aron: Right before we go into that, I just had a question for you. Correct me if I'm wrong, but if this was left for 5 to 6 years — since this is related to mast cells and brain inflammation — leaving it for 5 to 6 years is going to mean that this critical developmental period for a child, where their brain is growing and changing and so much is happening, is going to be occurring during severe years of inflammation. From a developmental standpoint, let alone physiological and mental health standpoints, that's going to impact development for a child, right? Like, you're making decisions to hold off as the practitioner that risk that.

[48:02] Dr. Linda Bluestein: Yeah, absolutely. It's just — I talked to Dr. Dacre Knight about this the other day on an episode of the podcast. If we don't identify things fairly early on, unfortunately they tend to just get worse and worse and worse. I mean, I guess there are some things maybe that get better, but if you think about EDS and HSD and the comorbidities like dysautonomia and mast cell activation syndrome — if people aren't supported in some way, if they're not able to start doing some of the movement that they need to do to start feeling better, working on their sleep, maybe taking some supplements or changing the foods that they're eating, and all of these things in the MENDS PMMS method that I really like to use — if they're not able to do those things, if they're not identifying what's wrong, and instead they're told, ah, just come back in 5 or 6 years, yeah, it's only going to get worse. And not only that, it's going to become this huge tangled mess that you're not going to be able to sort out — what's causing what. Kind of like what we started out talking about at the beginning: what starts the problem and what perpetuates the problem are two different things.
[49:07] I had a patient once that was told to just stay in bed all the time. She had actually hurt herself in a dance class where they were trying to work on the splits the whole time, hurt her hip, and she literally spent 18 months in bed. And within 30 days after I started working with her — and I wish I could tell you that all of my patients did this well, they don't — but she came back 30 days later and said she was 90% better. She had been told to stay in bed and their imaging was all normal, but she wasn't given anything to do. She wasn't given anything else. And she thought, okay, things hurt, therefore I shouldn't be active. And so she just got more and more deconditioned — and she had been a dancer. So that's an example of somebody where she was young, and just one visit, one conversation explaining how all of this is interconnected, explaining how pain processing works, made a huge difference for her. I wish everyone had a turnaround that quickly. I really wish that was the case. It's not, but at least sometimes it happens.

[50:07] Aron: It's a reason not to let it — we don't need to get into it, but for what I've been through and others I know, it's why not to give up. You can feel as bad as you want to feel and that's valid, but only you can be the proactive one to not give up on yourself. Because if it's not one thing and it's not the 100th thing, it might be the 101st thing. And it's great to hear that you had somebody who early on had it, but you and I both know people who gave up and stayed miserable to their dying day, and people who didn't give up and it took 10 years. You have to be your own best champion and then surround yourself with the best team you can.

[50:58] Dr. Linda Bluestein: And my favorite line is: never give up. And it's hard. Obviously people suffer with a lot of things, but yet — never give up. Should we move on to our hypermobility hack?

[51:15] Aron: Sounds great.

[51:16] Dr. Linda Bluestein: Okay. So the hack for today is going to be about treating the mast cell. When I first started my practice, I thought, okay, all these people have EDS and then there's this small subset of them that have mast cell activation syndrome, and those are the ones I'm going to treat with mast cell stabilizing drugs. No, that's not how it's worked out. I've really found that working on stabilizing mast cells in the much broader population of people that have EDS and HSD can be really, really beneficial, because mast cells are present in nearly every tissue. So when we stabilize them, we can have widespread effects across multiple organ systems.
[51:45] So if we can reduce mast cell mediator release — things like histamine, prostaglandins, and cytokines — we can reduce inflammation and we can improve symptoms that are present in the skin, the GI tract, the cardiovascular system, the nervous system, et cetera. And we talked earlier about neuroinflammation. Improved mast cell control can reduce neuroinflammation, and that can improve brain fog, pain, fatigue, pain sensitivity, mood, etc. So I really think that the most important thing for by far the majority of my patients is stabilizing mast cells — kind of like that grandmother was getting at — because stabilizing mast cells can also help with autonomic nervous system dysfunction and can improve the symptoms related to that, like heart racing and lightheadedness. So that's the hack for today. Not necessarily a unique hack, but it's a reminder to everyone that mast cells interact with nerves, blood vessels, our connective tissue — basically everything in our body. So treating the mast cells can lead to improvements that might be even greater than a lot of other single interventions.

[52:53] Aron: And if somebody's listening who is saying, you've given me a lot to think on today — sounds like there's a lot of dominoes that fall, and mast cells might be the first domino to be looking at — where do I start? What's my first step to focus on just that first core root?

[53:14] Dr. Linda Bluestein: Great question. Identifying triggers. It's really important to figure out what things seem to be causing problems for you. And it's really hard when you're polysymptomatic. Now that I'm not polysymptomatic, I can figure out, oh, I did this and then that happened. But when you have pain, headache, abdominal pain, nausea, fatigue, all these symptoms, it can be really hard to correlate.
Like, if you just went down the aisle in Target — not to single out Target, Walmart and all the other stores have this too — but if you go down the aisle that has all of the fragrances, like the laundry detergents and things like that, and you're like, I don't feel good — maybe you have multiple chemical sensitivity, maybe that's a trigger for you, maybe smells are a trigger for you. So if you can start to act like a detective, like we talked about at the very beginning, if you can put on your detective lens and say, one of my jobs is to figure out what things might be making my mast cells unhappy — and this is not to make you more anxious. Set your anxiety over here and put on your detective lens. Because for a period of time — not indefinitely, but for a period of time — you're probably going to have to modify some things in your environment. Whether it means getting an air purifier, a water purifier, changing up the fabrics, changing up the laundry detergent, changing up the things that you're breathing in the air — you get something new delivered, you let it sit outside for a while to air out before you bring it inside. Changing those kinds of things can make your mast cells happier.
[54:55] So that's kind of the first step: identifying those triggers. And what are triggers now are not going to be triggers forever. So just don't be anxious about it. If you're like, wow, I think everything's a trigger — just do what you can to try to address it. Whether it's mold in your environment or other fabrics or things that you're in contact with, start trying to pay attention to those things.

[55:18] Aron: And find the right practitioner to start investigating with you, right?

[55:21] Dr. Linda Bluestein: Yes, exactly.

[55:23] Aron: Yeah. I think that helps frame where to begin because it can feel so overwhelming. And I'm sure that's why so many people — loyal listeners and first-timers alike — appreciate what you're doing for us all, to just really frame it.

[55:35] Dr. Linda Bluestein: And yes, that's the first step: identifying the triggers. And then we've talked in a lot of the other episodes about some of the medications that can help, and supplements that can help. The whole entire reason for doing this show is because of people who are going around and saying there's nothing you can do for EDS. And that makes me seriously want to cry. It's so upsetting — because you have people like these 15-year-olds and these teenagers. If they hear that, and if their parents hear that and think, well, there's nothing I can do anyway — it's just tragic. It is absolutely tragic. That is the entire reason for doing this show.

[56:16] Aron: I think you're helping everyone understand how in their struggles and in their journey, it's a weird combination of very careful, deliberate thinking and also very efficient whack-a-mole, and playing the two together.

[56:36] Dr. Linda Bluestein: Beautifully stated. Beautifully stated, Aron. Well, thank you so much for chatting with me today. I really enjoyed this. It was really fun.

[56:46] Aron: Thank you for having me back on.

[56:46] 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.
[57:01] 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.
[57:24] 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.
[57:31] You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at hypermobilitymd.
[57:41] 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.
[58:12] 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.
[58:36] 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.