Unpredictability in EDS: Flares, Shame & What Actually Helps | Office Hours

[01:10] Aron: Welcome back to the Bendy Bodies Podcast. I'm Aron Korney, one of the executive producers of Bendy Bodies with Dr. Linda Bluestein. Hi, Dr. Bluestein.

[01:17] Dr. Linda Bluestein: Hi.

[01:19] Aron: We're excited. We're thrilled to be here to bend the ear of Dr. Bluestein and ask some fun questions that come from the community. And from our team, everyone here is so excited to hear, Dr. B, what you have to say for all these. So you're in the hot seat.

[01:32] Dr. Linda Bluestein: I love it. I like being in the hot seat. It's fun, especially with you.

[01:35] Aron: Yeah. Oh, thanks. Same. Well, you're in the hot seat. I like to ask the questions because I don't have to answer them. But no, today's going to be a fun episode. It's really exciting. We're doing some of the most significant positive life impact practices and takeaways that we have to share for people with EDS, hypermobility spectrum disorders, MCAS, POTS, and related conditions in the sphere. If you're a longtime listener or watcher — you can consume podcasts a lot of ways these days — you already know the plan today. We're here to help patients feel seen and heard, help clinicians stay curious, and just help everyone make better informed decisions. So whatever you're experiencing, I know all of us here on the team, Dr. Bluestein and I, everyone tuning in, we all grow together from these conversations. We get tips, tricks, and get to live our best lives from the tools we get from one another.
[02:23] Dr. Bluestein, I wanted to share — I don't have EDS, but I do have a chronic neck injury. I mentioned it on the last episode. I had a snowboarding accident in 2008. So I've had a lot of trouble finding the right kind of high-octane workouts that don't make the injury flare up. And I recently found kayaking just through online communities and forums and recommendations. And I just wanted to share that, like today's episode, while we were preparing for it, inspired me to share that for me, high impact sports hurt my injury and the water and the kayaking and doing the proper form — as long as you're not engaging your neck — through recommendations that helped me. And I just wanted to say, yeah, I'm excited for today's episode. Because for everyone, we all live our best lives through community and through the conversations and recommending to each other. So it just feels really nice to be helping the community in that way too.

[03:11] Dr. Linda Bluestein: Yeah, you can learn all kinds of cool things online, all kinds of tips and tricks. So I'm glad you found something that helps you. That's great.

[03:20] Aron: Yeah. Formal disclosure for everybody. As always, the information discussed today is for educational purposes only and is not a substitute for personalized medical advice. Anyway, stick around. We'll be right back with Dr. Linda Bluestein and today's hypermobility hacks.
[03:44] If you're just tuning in and for some reason missed the intro, this is, surprise surprise, Bendy Bodies Office Hours with Dr. Linda Bluestein. This is where I get to turn the tables and ask Dr. Bluestein the questions we've gathered from our audience, the hypermobility community, some of the team, and everyone out there in the ether who just loves what Dr. Bluestein is doing and all of us on the show. Just take the praise. Some of the things we're going to be going over today: family and friends — what do patients wish they understood; why symptoms can be so unpredictable; who belongs on your dream team, or more importantly, who's overlooked from your dream team; what to do when you feel stuck; and a good list of rapid-fire questions including favorite treatments, myths, and maybe a little surprise elevator story that I'm going to throw at you, Dr. B. And maybe Dr. Bluestein, you've got some hacks for us?

[04:31] Dr. Linda Bluestein: Yes. Super excited.

[04:33] Aron: Cool. Let's get to it. You ready for the first question?

[04:36] Dr. Linda Bluestein: Yes, I am.

[04:37] Aron: All right, here we go. A listener specifically asked for an episode for family and friends. What is the single most important thing you wish families understood?

[04:45] Dr. Linda Bluestein: Well, the first thing I wish I understood better when the person asked me to make an episode for family and friends — I wish I had thought to ask her exactly what she meant. So for anyone listening right now, if you're the one who asked me to do this, there was one person at the EDS Society conference who asked me to do this, and I could think of so many different directions that could go. And I think doing an entire episode geared towards family and friends to understand about connective tissue disorders like hypermobile EDS and HSD is a really good idea. So if you also like this idea, I'm going to give you a little bit of information now, but I also would suggest that you go to bendybodiespodcast.com and let me know what kind of information you want your family and friends to have so that we can then create that episode for you.
[05:27] So that's the first thing. The second thing that I think I want to just mention is that for family and friends, one of the things that they have the most difficulty understanding is the variability from day to day. So whether you have hypermobile EDS or HSD or MCAS or POTS, any of those conditions, it can be that you feel really great one day and then you are significantly impaired the next, or even just a few hours later you can be significantly different than you were just a few hours sooner. So a lot of family members can end up thinking that the person is exaggerating, or they're not being consistent, or they're not trying hard enough. They often will think the treatment isn't working. So I think one of the most important things for families to understand is that that variability from day to day is very real and has a lot of explanations. A really helpful thing for family members to say to the person is: I believe you — and what would help most today?
[06:28] There's also some really important questions that we as patients should be asking ourselves. And we are going to be discussing the four daily questions from this book with Brianna Greenspan and Dr. Gregory Stock. I'm going to show the book really quickly, and we're going to circle back to this later. She also has cards with the four daily questions. I think this is a really, really good tool. So we're going to come back to that in just a little bit.
[06:54] But to continue on with the variability right now — why is there so much variability from one day to the next? Well, there are a lot of different things that affect how the body functions for everybody, not just people who have hypermobile EDS or HSD, but in people who have these conditions, often those things are really magnified. So whether it's sleep — did they get good quality sleep, poor quality sleep, not enough duration? Did they sublux something in their sleep? Did they have some sympathetic surges in their sleep? That can greatly affect how a person functions from one day to the next. What's the temperature like? What's the weather like? Is it really hot outside? Is their air conditioning not able to keep up, or maybe they don't even have air conditioning? Heat is something that a lot of us are very sensitive to.
[07:40] There's also hormones. I've said it many times — mast cells have hormone receptors on their surface. So we know that hormones can greatly affect mast cell degranulation. Also things like hydration and blood volume. And you can think, oh, well, I just did exactly the same thing I did the day before, but things can affect you differently on different days. And again, these things can be additive. Maybe you're recovering from some physical activity you did the previous day, which is not automatically a bad thing. If you did physical activity and it takes you a little while to recover, but then you rebound back to where you were within a day or so, I think that's probably okay for most people. But if you are set back for months or weeks, obviously that was way too much.
[08:28] Another thing is prolonged standing — and we're going to talk more about prolonged standing in a little bit. Things like pain, illness, or immune activation. So people can be doing really, really well, and then they get a virus and their pain gets worse and they get sicker and they just don't feel well. And that immune activation can often exacerbate other symptoms. We know mast cells are very much related. Environmental factors — when you're exposed to different things in the air or in your water or in your food, that can make a difference with your symptoms.
[09:02] Also gastrointestinal issues. The gut isn't necessarily going to function the same exact way one day to the next, and your nutrition is not going to be exactly the same one day to the next. Also things like stress — physical stress or emotional stress, even positive stress. Something good like a wedding is still stressful, right? Or having a baby, as we know somebody recently did. Those kinds of things — they're good, but they're also stressful. Also medication changes. Travel. We already talked about weather and the environment. When we talked about hormones, also menstrual cycles. And as I mentioned earlier, just exceeding your physiologic capacity one day and then the next day taking longer to recover.
[09:45] So every day can be different. You can feel like you're doing really, really well, and then you have a little bit of a setback, and it can be really hard to feel that hope again. But if you try to observe it more from a reporter's mindset and think about, okay, what are some of the factors that could have been involved here? We're going to talk later about keeping track of your own personal tips and tricks, because it can be hard to remember those at the time that you need them.

[10:10] Aron: It definitely sounds like — and correct me if I'm wrong — that kind of in your own family too, there are so many unknown unknowns. And even for yourself, as you're finding them out, it almost seems like you might do yourself a better service telling friends and family, hey, there are unknown unknowns that I'm still figuring out. There are too many complications to fully explain to you also. Just trust that the experience I'm having is challenging and give me some grace, rather than trying to give them, like, the card with four daily questions. It's a lot to give somebody a list of which of the eight things you just listed apply to you, because there's so much in flux and so much that you're learning about yourself always. So the blanket understanding is probably going to serve you better than friends and family having to remember certain key things — and also asking you targeted questions about them could probably be very draining.

[11:10] Dr. Linda Bluestein: Yeah. A lot of people — and I do this exact same thing — if we're not doing as well as our baseline, or we're having a particularly difficult day and we can't figure out why, it's very, very frustrating. It's a lot more frustrating than if you are having more pain, having a high pain day, and you're like, oh, well, it's because I — for example, I'm having a lot of pain right now in my left hamstring, not at this very second, but I did yesterday and the day before because I've been doing a lot more walking uphill. So I have a good explanation. I know why that's the case. And I also then know what to do about it. But when you don't know why something has flared up, it is so much more frustrating. And sometimes there is no answer.
[11:49] So another thing that I definitely did not appreciate until I started treating more people with hypermobile EDS and HSD is how significant the fatigue can be for people, and how so often people feel like, I'm only in my 20s and I can't do the things that other 20-something-year-olds do. It's really, really frustrating. It's like you wake up in the morning and your cell phone battery is only charged to 40%, or 30%, or 20%. And so you're starting the day at such a lower level than most people who might wake up with a cell phone battery charged to 100%. I think that's a good analogy of people who have these conditions. We have a bunch of different theories as to why fatigue is such a common problem. Nobody knows absolutely for sure, but we know that it's extremely, extremely common. And it's not just a matter of pushing through. It's a matter of doing a whole bunch of different things, as we're going to talk about later. And often it's just deciding what's the one next thing that's best.
[12:57] There's somebody who came up with the spoon theory. I know that there are people on social media who refer to themselves as spoonies. I've actually thought about creating Bendy Bodies spoons — because Bendy Bodies can give you one more spoon, maybe, is the idea.

[13:12] Aron: And it's good, because if you ever change directions in your career to psychic skill show-offs, you also have the spoons ready.

[13:20] Dr. Linda Bluestein: Exactly. All of the spoons ready. So you start out your day with — pick a number — let's say your typical day you start out with 10 spoons, and you use a spoon to take a shower, and then you use another spoon to make your breakfast, and you use another spoon to eat your breakfast. Well, now you only have 7 spoons left for the whole rest of your day. It's just kind of a way of thinking about your energy that a lot of people, I think, find helpful in this community.

[13:49] Aron: Yeah. And I think it was Christine Miserandino who coined the spoon theory. But I've really liked it because it seems like it's also a very useful tool, not only for self-reflection on what capacity you have left, but also as a tool to educate friends and family — use it as shorthand with them. So you don't have to explain beyond, "Do you have spoons left? How many spoons do you have left?" That allows you the grace of being able to just move past that, and you don't have to get too into further detail. They just understand. Cool. That's how much — or in your case, Dr. B, how much battery you have left in your phone because you woke up with it not charged. These tools to be able to tell others outside of yourself where you're at seem so helpful.

[14:35] Dr. Linda Bluestein: Yeah. And at the same time that you're trying to figure out how to use your spoons efficiently or use your battery life efficiently, I also really try to work with people — and that's part of what we do on this podcast, of course — to help people to get more spoons and to help people to get more charge on their battery. Because it's one thing to adjust your lifestyle and your activities, but it's another to actually improve your quality of life so that you can do more things. And that's really the goal: to get people feeling better so that they can do a little bit more. I have so many examples — not every patient, I wish I could say that every single patient I've ever worked with has gotten significantly better, but a lot of them have. A lot of these things that I've talked about have really worked well for me, and a lot of them have worked well for my patients as well.

[15:24] Aron: And I've never taken you as the teaspoon type. You seem like a soup spoon person.

[15:32] Dr. Linda Bluestein: That's funny. So if we make Bendy Bodies spoons, they should be soup spoons.

[15:36] Aron: You know what? Let's go full throttle. Let's go ladles.

[15:39] Dr. Linda Bluestein: Yeah.

[15:39] Aron: Bendy Bodies ladles. Yeah. Let's really go for it. Live it up. All right, here we go. Next question. How should family members respond when someone cancels plans at the last minute?

[15:49] Dr. Linda Bluestein: So I would suggest, instead of saying things like, "Well, you were fine yesterday," "You always cancel," "Can't you just push through?" — some other things that are more helpful to say are things like, "I'm sorry today is a hard day. Is there a different way we can make this work?" Maybe dinner becomes takeout. Maybe the person comes for a 30-minute visit instead of for a couple of hours. Maybe they need a chair. Maybe they don't come at all. Accommodation is not failure. Accommodation may be what allows participation.
[16:19] I remember when I was in physical therapy and not doing well myself, and I was supposed to go to a party that night. I went to a physical therapy session and the physical therapist, for some strange reason — speaking of hamstrings — decided to really work on my hamstrings and was stretching me and doing all kinds of things. And I ended up in terrible, terrible pain. I was driving home and my legs just completely went into a spasm. I almost had to pull my car over. I almost didn't make it the rest of the way home, which wasn't that far, but I did make it home, and I was in so much pain that night. So I had to tell my husband I can't go. Fortunately, he was understanding. But I'd been doing fine the day before. So it's just amazing how quickly things can change and how we just have to try to roll with it.
[17:10] I don't know if you're religious at all, but the title of this book has the word God in it, so I hope it's okay to mention this. Have you heard of the book We Plan, God Laughs?

[17:21] Aron: No, I haven't. What's that about?

[17:26] Dr. Linda Bluestein: It was written by a rabbi and it's basically about how we have all these grand plans in life, but we're not in control of anywhere near as much as we think we are. I was thinking about this book as a reminder to everybody that everything's unpredictable in a way, or not totally predictable.

[17:46] Aron: I've spent my fair share of time around a lot of rabbis, and "we don't understand, but let's debate it extensively" is definitely the right philosophy. So that checks out. Okay. So then, as people come to understand what they're dealing with, how can families adapt and help that individual? Maybe what you've experienced seeing with your patients — and those listening and watching — help that person feel less helpless?

[18:10] Dr. Linda Bluestein: Yeah, it's really tricky. And of course, this is also very age dependent. In this conversation right now, I'm kind of assuming that we're talking more about adults with each other, not a parent and a child, just to clarify. And I think that the biggest principle is to ask rather than assume. Something that I often do is offer advice, even if the person just wants to vent. I'm so used to giving advice. So I think it could be helpful to ask the person, "Do you want help or my input, or do you just want me to listen?" I think that can really make a big difference. Because unsolicited advice — that was definitely something I dealt with a lot when I wasn't doing well. When I was in a lot of pain, I had a lot of people say, "You should try this, you should try that." And it's hard, because oftentimes that feels to the person with the problem like the other person thinks they're not trying hard enough — because certainly if they did this thing or that thing, they would be doing better than they are.

[19:11] Aron: And you feel shame and you feel embarrassed, and that becomes a spiral that, like a snake eating its own tail, just keeps going.

[19:19] Dr. Linda Bluestein: Yeah. The shame and guilt is a significant thing that we should talk about a little bit, because I definitely had a lot of that when I wasn't doing well. I felt guilty because I missed a lot of family trips. I felt shame because I was like, it shouldn't be like this. Why am I not able to do more? Why am I not doing better? And I think that both shame and guilt make things worse, because you're getting inside yourself and that negativity just exacerbates everything. We know the brain and the body are connected, and it's a connection that is physiologic, not psychiatric. So it's really important to think about how what we think affects how our body feels and vice versa. Avoiding blaming ourselves, I think, is really, really important.

[20:07] Aron: I would also imagine a lot of it is acceptance and learning how to not only not feel shame, but even give yourself understanding — to see yourself and accept yourself as the version of yourself you currently are. And treat yourself the same way you would treat a friend if they came to terms with something like this that's going on with them. What you're experiencing — treat yourself the same way and say, it's okay, that's where I'm at right now. There's nothing to be ashamed of, because I'm trying to take care of myself the same way I would tell somebody I love to do that for themselves.
[20:47] I say that as somebody who, when I had my neck injury, I missed one of my best friend's weddings because I couldn't travel at that time. And I was so hard on myself. And it took me a long time to learn — now, all these years later, it's fine. I had to learn a couple of big moments like that: okay, that's what I needed then. It doesn't mean I'm a bad person. It doesn't mean I don't care. It was what I needed — it was what my doctors needed me to do. And I would imagine that for everyone, that is such a tough journey to go through, of accepting. But that grace is so vital for you to move forward.

[21:24] Dr. Linda Bluestein: Yeah. For me, it was in October — I think it was October of 2009 — when I was getting out of a kayak and got hurt.

[21:32] Aron: And all sides of kayak life today, folks.

[21:35] Dr. Linda Bluestein: Exactly.

[21:39] Aron: What you tuned in for.

[21:41] Dr. Linda Bluestein: Yeah. And that was the beginning of a few bad years for me. Very, very bad. I did feel very guilty over missing those family trips and everything. And it took me a while to come to that acceptance of, oh my God, I can't believe I'm in pain every single day now. Because before that I wasn't. And now all of a sudden I'm in pain every single day. Thank God — knock on wood — I'm not in pain every day now, but I was for a period of years. So it can be hard to accept, oh my God, is this the new normal? And I've had patients ask me, should I be working on the situation or practicing acceptance? And I usually tell them both. You can accept what is. But you can also be working on trying to make it better.

[22:34] Aron: They're both hard. They're both Mount Everests in their own way. And some people take to one better than the other. It seems like at least one of the two is always an insane, difficult, almost unfathomable pill to swallow. And it's hard to predict which one. But you need both for sure.

[22:52] Dr. Linda Bluestein: Yeah. Yeah, you do.

[22:52] Aron: You can't just grind it out and do PT and treatment and all of the physiological focus on it without the psychological, or you'll drive yourself crazy whenever things don't move the way you want — because that's going to happen. There's always a step back. Even if there are 100 steps forward, there's going to be one step back somewhere, and you can't let those crush you.

[23:17] Dr. Linda Bluestein: Yeah. When my doctor first recommended that I see a pain psychologist, I remember her literally asking me, "Can you think of anything good that has come out of this?" And at that time, the answer was no. There is nothing good that has come out of this. But if I didn't have all of that happen, then I would not be sitting in this chair right now talking to you. So now I definitely recognize a lot of good that came out of that.
[23:41] I was doing the regular anesthesiologist job in the operating room, taking care of one person at a time. Or sometimes I was working with nurse anesthetists and so I had more people, but I always wanted to try to make a bigger difference. And I don't think I would be doing this if I didn't go through all the things that I went through. So I think there are also lots of people who try to take their life experience and turn it into something positive. And that really also helps because it gets the focus outside of yourself. And when I talk to patients and I see all the things that they're dealing with, I realize how fortunate I am too. It's a constant reminder.

[24:21] Aron: Yeah. No, that's a great framing.

[24:24] Dr. Linda Bluestein: Okay. So some other things that I think families could say in this asking-rather-than-assuming mode — you could also ask, "What would make this easier?" Something like, "Would sitting help? Do you need to leave early?" Sometimes it helps to plan ahead and think, okay, do we need to take separate cars in case one of us wants to leave early?
[24:45] This is an interesting one: "Would you like me to come to the appointment?" When I was really not doing well — I hope my husband is going to be okay with me sharing this — I never asked him to come with me to appointments. We were both working full-time. He was extremely busy, and I never really felt like I could ask for that, even though I did want it. I think I was afraid of the answer. I think I was afraid he would say no. But now he goes with me to appointments. Of course, thank God I don't really need appointments anymore. But asking if you can go with the person to their appointment can be really helpful, because having another person to take notes — and to give the clinician the bigger context that this person is part of a family unit or a friend group or whatever it might be — can be helpful for the clinician.

[25:34] Aron: I've also found it's nice to have somebody there to remind you to laugh sometimes. I know that sounds a little silly, but it makes all the difference.

[25:42] Dr. Linda Bluestein: You know what? I love that. I've been married for over 30 years — anyway, a long time. And that is one of the things I love most about my husband. He absolutely makes me laugh. You've met him a number of times.

[26:01] Aron: I know him quite well. He's a great guy.

[26:03] Dr. Linda Bluestein: Yeah. He's a great guy and he's really funny. The kids, when they were little, would be like, "Funny story, funny story" — they thought he could just turn it on like a switch. So yes, having somebody around that can help you change your mood or something can be really, really helpful.
[26:19] And then the last thing I would mention here is that the person can ask, "Is there something I can take off your plate today?" Because you don't want to take over. And you also don't want to make them prove that they're sick enough to deserve help. So you want to be supportive, but you also want them to feel empowered.

[26:35] Aron: Yeah, that makes sense. Is there something about the way families try to accommodate and help provide rest — or whatever it might be — that is often misunderstood? Any other guidance that can help those listening who are in a more supportive role just get ahead of the mistakes that might be made?

[26:58] Dr. Linda Bluestein: Yeah, it can be really challenging because a lot of us make accommodations that we don't even really think about. This happened to me just the other day — I was standing on a tile floor and I was dying to sit down. My husband asked me afterwards, "What was hurting?" And I said, I can't even tell you. I can't remember if it was my back or my legs or my feet, but I was really, really uncomfortable. I was standing with a group of people, so it was really awkward to go sit down. And I thought, I guess I make more accommodations in my day-to-day life than I realized.
[27:31] So I think the first thing is for families to realize that the person is probably already doing a lot of accommodating to try to keep going through life. And we want to try to support that in healthy ways. You know, there are those portable chairs — sometimes there's a cane that has a chair attached to it. Sometimes you need stuff like that. I often use cushions, although thank God I don't need them as much as I used to. I used to always, always have a cushion with me. Changing positions frequently can help a lot of people. Getting out of the heat, using cooling vests or whatever.
[28:09] Trying to stay in solution mode and out of fear mode, I think can be really helpful. So if family members can help the person think strategically — think ahead without getting too overly anxious, but thinking strategically about what possible things might come up and how they might be best prepared for those things. Is there a medication that I should have on hand? Should I have my electrolytes ready to go? What kind of things could I possibly carry with me, or have in my car, or have in my house so that I can continue to do as much as I can?
[28:47] Because when people start to get their worlds smaller and smaller, I think that really creates a big problem — then they start getting more internally focused and start focusing on every little sensation. And of course we all have random different sensations. So we want to maintain some of that outward focus to the extent that we're able to, because connection is so important. Connection with other people helps a lot.

[29:17] Aron: Yeah. You know, I was prepping last night for our conversation today and something I read — I was just looking into what are things that can happen to the body that I might not have been aware of — and it kind of just gave me a little moment of like, okay, you need to give yourself some grace for the breaks you need to take. Allow as a supporter and caretaker or friend, family member — going back to what I was saying before, to the spoons, let's go full circle here.

[29:56] Dr. Linda Bluestein: Yeah.

[29:57] Aron: Noticing the battery level, the spoons that they have — you might not understand the why. Just understand that it is. And this is a welcome reminder to me as a producer too, and also why it's so important to take breaks. Maybe we take one now.

[30:15] Dr. Linda Bluestein: Yeah, I think that's so important. And speaking of spoons, I want everyone to add a couple of spoons right now or recharge their battery a little bit. So let's take a quick break. And when we come back, we are going to continue this conversation and wrap up with our rapid-fire questions.

[31:08] Aron: Welcome back to Office Hours with Dr. Linda Bluestein and me, Aron, the mysterious questioner. Dr. Bluestein, just bear with me. We had a really interesting question, and I think you and I were talking during the break about reframing this. There was a question that came in about how to build the best care team — who's your dream team and how to build it? You and I were talking a lot during the break about reframing it a little bit, because there are millions of lists out there, including so many things you've talked about on your show about how to structure your support.
[31:48] What was really interesting in the conversation you and I had — that I'm going to tee you up for right now — is who are the people that are often overlooked? Who are the unsung heroes? Who are the people that are not always included in a core list of who should be on your dream team, that you really want to make sure you're advocating for people to consider?

[32:05] Dr. Linda Bluestein: So the number one that I would say is a pelvic health or pelvic floor specialist — usually a pelvic floor physical therapist. I think that oftentimes people don't think about this soon enough, or maybe they don't even know that it exists. I certainly didn't before I went to see one. And that can help with a lot of things, including for guys. A lot of times guys don't realize that they have a pelvic floor too. And seeing a pelvic floor physical therapist can help with low back pain, hip pain, incontinence, pelvic pain, all kinds of things. So that's the first one.
[32:42] Second, I think that probably anyone who is dealing with chronic pain, chronic symptoms, chronic illness — if they possibly can — seeing a mental health professional who understands those things can be really, really beneficial. It can be a great way for you to have an objective person to vent to, who can provide you with feedback and a safe space where you can share how you're feeling. So those are the two that I think are most often underappreciated.

[33:11] Aron: Yeah, I mean, obviously a recurring theme today is just self-advocacy, making sure you're getting what you need. And I think those are interesting. I want to keep us moving, in the spirit of self-advocacy. I know there's a question in that book you showed earlier — and I apologize, I haven't read it, but I'm looking forward to hearing what the question was that you wanted to read from it and talk about.

[33:35] Dr. Linda Bluestein: Yeah. It's called The Book of Questions: Living with Chronic Illness by my friend Brianna Greenspan and Dr. Gregory Stock. I'm holding it up — if you're watching on YouTube, you can see the book, but we will add a link in the show notes. And she also passed out these cards at the EDS Society conference with four questions. The first question is the one I'm going to read right now, and I really, really liked this question because it's something that as a patient you ask yourself.
[34:04] So the question is this: "Despite how I'm feeling in this exact moment, what can I do to best support myself starting now?" And Brianna describes this as a micro massive action question. I like that because it might be a very, very small action, but hopefully it has a more massive effect. It could also be a bigger action. And I think that as much as we were talking about families and how families can help, at the end of the day we're each responsible for our own health, responsible for our own actions. So asking yourself, "What can I do to best support myself starting now, despite how I'm feeling in this exact moment?" — for example, you're at the grocery store and you suddenly feel like you're going to faint. The goal should no longer be to finish grocery shopping. The goal should be to sit down so you don't faint. And that's a small action, but has potentially massive consequences.
[34:52] So the micro action could be drinking fluids, eating, taking a medication that you have for as-needed use, getting out of the heat, putting on compression, canceling something, changing positions, asking for help, stopping an exercise that's not going well, laying down for a few minutes, calling your clinician. It's a way of thinking about what can I do for myself — because we really want to empower people. As much as we want to educate families how to be helpful, we want to empower people to take ownership of their health.

[35:34] Aron: Seems like there's a recurring theme we keep hitting on here.

[35:36] Dr. Linda Bluestein: Yep. Exactly.

[35:39] Aron: You have to be part of your own care team. You cannot wait to find the right person and hope they're the only one who fixes everything.

[35:46] Dr. Linda Bluestein: Yeah, actually — when you said the most overlooked person on the care team — it's probably you. Yeah, it's probably yourself.

[35:50] Aron: Yeah. I don't know. That just came to mind when you were talking about how ultimately it comes to you. It really does. If you're not the project manager of your own team — unless you're exceedingly wealthy to a Hollywood A-lister level — you need to be managing it. Not just choose one doctor and hope they fix everything and take the lead.

[36:16] Dr. Linda Bluestein: Yeah. And something I want to point out — and I think I alluded to this a little bit earlier — is that when things are not going as well, we often don't remember the tools that we have. Thinking about, well, what does my body need from me right now? Not tomorrow, not six months from now, but right now — it can be really hard to remember, oh, I have this red light device, I have this topical medication, I have this as-needed medication that I can use, I have these other things that I can do, I can elevate the body part, I can change the clothes that I'm wearing or something. It's really easy for us to forget those things when we're not feeling great. This happens all the time — I'll be talking to a patient and I'll say, "Did you try that as-needed medication I prescribed for you?" And they'd be like, "I totally forgot about that."

[37:08] Aron: God, it's a whole other episode we would have to do on this one, but it seems like AI is increasingly helpful for that too, if people are using their AI agents to actually keep track of this stuff and help them remember these things.

[37:22] Dr. Linda Bluestein: Yeah. Well, we're recording an episode in a couple of days about using AI for your health and how to do that in the most productive way while being as safe as possible with privacy. And also what does privacy mean, because more and more we are using tools like AI and they can be really, really beneficial.

[37:42] Aron: I was hoping you just had one simple answer to all of AI right now. You know, the hot take on all of the future of AI in healthcare.

[37:53] Dr. Linda Bluestein: Yeah, it's complicated. It's a lot. A lot is happening lately and there's a lot of things that people are worried about, rightfully so. And there are a lot of things that I think we are kind of blissfully unaware of. But I'm really excited about this conversation we're going to have in a couple of days because Dr. Turkin is very knowledgeable in this space. And so I think it's going to be really valuable for a lot of people, whether they have hypermobile EDS or HSD or a related condition, or none of those things at all.

[38:26] Aron: Yeah. Looking forward to hearing that one. Along the lines of more questions that have come in, and I know we're almost done for today — we had a question that came in about pregnancy with hEDS and POTS and MCAS. I know we don't have a lot of time to get deeply into it, but correct me if I'm wrong — just like the AI thing, that's a whole world in and of itself that probably goes beyond the confines of what we're talking about here today, right?

[38:54] Dr. Linda Bluestein: Yeah, definitely. I think we need to do an entire pregnancy episode. I did one, but many, many moons ago. So we need to do another episode that is entirely about pregnancy. I would love for people to submit their questions specifically about pregnancy to bendybodiespodcast.com so we know how to shape that episode to make it maximally beneficial.

[39:18] Aron: Great. So we won't stay on it too long here, but yeah, everybody — bendybodiespodcast.com. Let's do it. Send all the questions. We're going to cover it. Before we wrap things up, Dr. Bluestein, you down for a little rapid fire?

[39:29] Dr. Linda Bluestein: Sure.

[39:31] Aron: All right, here we go. Favorite treatment?

[39:33] Dr. Linda Bluestein: Low-dose naltrexone.

[39:36] Aron: Most underrated treatment?

Dr. Linda Bluestein: Cromolyn.

[39:36] Aron: Most underrated intervention that isn't a medication?

[39:43] Dr. Linda Bluestein: Learning when to stop before your body forces you to stop.

[39:48] Aron: Most important accommodation?

[39:49] Dr. Linda Bluestein: Being able to change positions when needed — like that example I gave earlier when I was standing on a hard floor.

[39:56] Aron: Maybe it's tied in, but biggest recent surprise about your own hypermobility?

[40:00] Dr. Linda Bluestein: Realizing how many accommodations I make for myself without even recognizing them as accommodations.

[40:10] Aron: Most frustrating misconception?

[40:13] Dr. Linda Bluestein: That joint hypermobility doesn't cause pain. Not everybody with joint hypermobility has pain — there are people who have asymptomatic joint hypermobility. But I want to color this in a little bit more by saying that study after study shows that the vast majority of people who have symptomatic joint hypermobility — so any kind of symptoms related to having hypermobile joints — that 90-plus percent, and in some studies it's like 99 percent, have persistent pain and dysfunction. So pain is the most common presenting symptom for symptomatic joint hypermobility.

[40:46] Aron: Wow. Okay. Let's keep going with that then. Most outdated myth.

[40:51] Dr. Linda Bluestein: There's nothing you can do. This drives me nuts. This is the entire reason why we have this podcast — because there is so much that you can do. Yeah, that drives me nuts.

[41:03] Aron: Okay. So in that vein, most common misconception?

[41:03] Dr. Linda Bluestein: That there is one definitive test for hypermobile EDS. There isn't currently any biomarker, laboratory test, or genetic test that confirms hypermobile EDS. And normal imaging and normal lab testing also does not mean that a person does not have meaningful pathology.

[41:23] Aron: Okay. So that's the most common misconception. What's the most dangerous misconception?

[41:27] Dr. Linda Bluestein: That surgery is inevitably the answer to every unstable joint. Sometimes we can do rehabilitation. Movement strategies are very important — load management, et cetera, treating contributors to pain and inflammation. But also addressing mast cell activation is something I want every orthopedic surgeon to know about. I want every orthopedic surgeon to know that mast cell degranulation releases mediators that can loosen connective tissue and contribute to joint instability. They don't need to know how to solve this problem or what to do about it, but they just need to know that maybe there are some other solutions besides surgery for unstable joints, and they need to know where to point that person.

[42:12] Aron: Tell us what you really think.

[42:13] Dr. Linda Bluestein: Yeah. Well, it came up during a conversation with an orthopedic surgeon who is really, really excellent and renowned in their field. But I think so often we don't know what's happening in other fields. I don't know what's happening in oncology — thank God, that's not my field. So I think for orthopedic surgeons to just be aware that in the allergy immunology space, whether it's the mast cell, the complement system, or something else, there are immune-mediated factors that can affect how joints behave — which is not something that I think most orthopedic surgeons are taught. So I think for them to appreciate that there might be other avenues to improve joint stability — it depends on the person's situation, of course. There are going to be all kinds of individual variable factors. Was there some big traumatic event? Or is this something that's really recurrent? Is there a way that this person can have some medical management that can help reduce the chances of whack-a-mole? Because that's what we don't want: you fix this shoulder, now you fix that shoulder, now you fuse this joint and now you have to fuse that joint. You can end up in this difficult situation with one surgery leading to another surgery. Surgery is definitely sometimes necessary — don't get me wrong — but if we can improve things medically, oftentimes that's better.

[43:39] Aron: Yeah. If you were stuck in an elevator — maybe this happened to you — if you were stuck in an elevator at a conference with an orthopedic surgeon who was not as familiar with your world, what do you think they'd be most shocked to learn? If they were stuck in an elevator with you and you got to really give them a soapbox on something that was overlooked in their training?

[43:58] Dr. Linda Bluestein: I love the way you phrased this question, because I have gotten stuck in an elevator once. And I was by myself, but I was on call.

[44:03] Aron: I don't love it for you, but yeah.

[44:07] Dr. Linda Bluestein: And I was on call. So the elevator was between floors and I'm literally looking at my pager going, don't go off, don't go off, don't go off, please don't go off. Yeah, it was stressful. But anyway — stuck in an elevator with an orthopedic surgeon. I think I would say to them that it is possible, with some of your patients that you are seeing with unstable joints, that there might be some other contributing factors. So if you develop a set of screening questions — like, do you tend to get rashes and hives? Are you generally sensitive to environmental factors? Do you consider yourself to be hypermobile or double-jointed? Do you frequently get dizzy when you stand up? — you're kind of screening for dysautonomia or POTS. I think if you have a set of maybe five to ten quick questions that even your medical assistant can ask them, if they're coming in for shoulder instability or something like that — they can give them a sheet of paper ahead of time, or they can answer it on a portal, a series of about ten questions — you're screening basically for mast cell activation syndrome.
[45:17] And if they do sound like they have unstable mast cells, which is a part of the immune system, or if it sounds like their immune system is dysregulated, then maybe that's contributing to their unstable joint. Even though it's only one joint, maybe they are having this systemic problem. And maybe by addressing the systemic problem, you can improve that joint stability — because I've seen it happen time and time again. It does really happen. It could be that mold started the problem, maybe a tick-borne illness. It's a cumulative thing with lots of other environmental factors. And we know that there are other factors that can influence the immune system also, like trauma, concussions, infection, pregnancy. So there are a lot of different things that can influence how the immune system and the connective tissue behave. And I don't think that most orthopedic surgeons realize that connective tissue and the immune system are so closely linked.

[46:07] Aron: That drives to a really important question then. Before the elevator opens — what snack are you most likely to have on you for the two of you to eat?

[46:22] Dr. Linda Bluestein: Oh my gosh. Oh, that's a good one.

[46:24] Aron: Can we not laugh about this, please? This is a gravely serious question.

[46:25] Dr. Linda Bluestein: This is a very serious question.

[46:27] Aron: Yeah.

[46:29] Dr. Linda Bluestein: And I can show you because I have them here — this is pistachios, and yes, it is in a plastic container and I generally try to avoid plastic. But I have nuts on me almost at all times.

[46:43] Aron: Great. All right. Thanks for rolling with my insanity. No, I mean, thank you for answering the more intellectual part of it all. And you know, snacks. All right. Last question. Got a hopeful thought for us to end on?

[47:02] Dr. Linda Bluestein: Yes. I can tell from working on my own body and working with patients and clients that the next step that you do doesn't have to solve everything. It just needs to move you in the right direction. I think oftentimes we don't appreciate that this is a process and it takes time. And if things are going in the right direction, sometimes it's like baking a cake — you can't speed up how fast that cake bakes. I mean, you can turn the oven up a little bit, but it still needs a certain amount of time to rise and all that. It also takes time. So making some small changes, allowing for time, and asking yourself that question from the book — it really is empowering. And I think if people just try to focus on, "Am I moving in the right direction?" — because it's so easy to notice when things aren't going well, and it's really hard to be aware when things are getting better.

[48:03] Aron: Eloquently said. All right. So we covered a lot here, and I'm not a medical professional. I live in this world as much as I do working with you and so many other amazing voices in the healthcare space. And so if those listening or watching — or psychically connecting with the show, whatever way people connect with podcasts now — if someone like me hears all this information and they're maybe overwhelmed, or at least just feeling like there are a lot of pieces swimming around in their head, where do you think — just to help ground me, help ground everyone — where should people start in terms of the most salient takeaway here to start thinking about for self-advocacy or moving forward?

[48:56] Dr. Linda Bluestein: It can be really hard to figure out what's the next step. And I'm going to also turn this into our hack for the day. I think that — and I know a lot of times guests will say this: "Is this really a hack?" People can decide. But I think we can get so overwhelmed thinking of all the things that we have to do. I often do this — I give people so many things in an appointment. I prescribe this medication and I recommend that supplement and I suggest that they do this and I suggest they do that. And it can be so, so overwhelming. So I think just picking one of those things and knowing that there usually is not a perfect sequence — I think people often, like me, are perfectionists and they think, oh my God, I have to do this exactly right. And usually we don't know what the perfect sequence is. So pick one thing that you think is going to make the biggest difference right now, or is most feasible for you, and do that thing and try to give it time.
[49:57] Keep track of how you're doing, because like I said, you need to make sure you're trying to notice improvements — that can be harder to notice. We all notice when we feel worse, but we don't necessarily notice when we feel better. I think that's the biggest thing I want to say to that. And that's the hack for the day: pick one thing that you think is going to make the biggest difference right now, and do that.

[50:19] Aron: If someone's feeling a little overwhelmed and they're not feeling like they can even quite distill what that first one thing is for them — do you have a good, "can't promise it, but maybe this is a good starting place" suggestion?

[50:32] Dr. Linda Bluestein: Yeah. Something that somebody told me — actually, he's a Navy SEAL friend of mine from many, many years ago — and I was really struggling at that time medically. He made a suggestion to me and I'm going to repeat that suggestion. He suggested that I write down how much I moved on a given day, and the following day try to do just a little bit more.
[50:55] At that time I was spending all day, every day on the couch. I would get out of bed, go downstairs — I could go up and down the stairs, but only once per day. So I would come down the stairs and spend the whole day on the couch, and then at the end of the day I'd go back up the stairs and go to bed. That was my entire movement for the day. I didn't leave the house. I spent about a month that inactive. So he suggested that I write down what I did today so that the next day I could look back at it and go, okay, can I try to do just a little bit more?
[51:28] So if someone's listening and they're spending 23 hours in bed, if they even spend 22 hours and 55 minutes in bed, that's a little bit less than they did the previous day. We all start somewhere. We want to start with what we have right now. We always want to meet people where they're at. But in general, if we can start to just move a little bit more — movement truly is medicine. And if we want to be able to move, we have to move. And a lot of people say, well, I've tried physical therapy, it didn't work. But every single type of movement or activity that you do counts. And that also brings us right back to what you said at the beginning about the kayaking. Everyone finds something different. People learn from different places, online and in communities and things like that. So what works for one person is not going to be what works for another person, but just keep trying to learn and keep trying to improve your situation as best you can.

[52:36] Aron: Yeah. And it all goes back to the technology thing too, right? That you're going to talk about with AI. I have on my hand here — I'm not going to show you the finger because it's on my middle finger — but I have the Oura Ring here. People have Apple Watches and all the different devices. It's so useful to be able to measure it. If you feel overwhelmed, you can now look at these apps to help show you your progress so that you can strive for marginal increases and actually help yourself do that, rather than just trying to gut check it every day.

[53:05] Dr. Linda Bluestein: Yeah, definitely. Because it's easy for a lot of us who have anxiety to catastrophize — oh my God, this is going to go on forever. And it can be really, really hard. So just trying to focus on one thing. There's a "three feet" analogy — my husband likes to use this — if you're rock climbing, you shouldn't be looking way, way ahead. You should be looking within your three feet, like where's my next hold? Not that a rock climbing analogy is going to be very helpful for a lot of people — I don't know how many rock climbers listen to this episode, but I have a son who rock climbs. So I think in life, if we can try to remember that three feet, that can be helpful.

[53:48] Aron: I think that's great. I have a final question for you for today's episode. How do we say goodbye, Dr. Bluestein? How do we say goodbye to one another? What is the thing from Titanic? You gotta let me go. Yeah. Actually, that's pretty grim.

[54:05] Dr. Linda Bluestein: That's grim.

[54:08] Aron: No, it was really fun to be here with you today. Thanks for inviting me back.

[54:12] Dr. Linda Bluestein: Yeah. This was fun. Thank you so much. And we look forward to getting questions from people because it really does help us shape these episodes. So whether it's a question regarding pregnancy or something else, please submit your questions to bendybodiespodcast.com and your feedback, because we love hearing from you. We like hearing what you like, what you find helpful, what you want to see more of, if there's anything you want to see less of. So please send your feedback, and thank you so much, Aron, for joining me today.

[54:38] Aron: Thank you, Dr. Bluestein. It's always my pleasure.

[55:02] Dr. Linda Bluestein: Thank you 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 these conditions that are still widely misunderstood. And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast.
[55:40] As many of you know, my passion is helping people better understand and navigate symptomatic joint hypermobility. In addition to my clinical and educational work, I offer one-on-one coaching, professional mentorship for healthcare professionals, and expert witness services. If you'd like to learn more, please visit the services page at hypermobilitymd.com.
[55:59] You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at Hypermobility MD.
[56:06] As part of our collaboration with the UVA Health EDS and Hypermobility Disorders Center, we also want to share a few helpful resources. For questions or appointment inquiries, you can contact them at [email protected]. That's the letter R, [email protected], or call 434-243-8200.
[56:31] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. We love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect my views or opinions. Furthermore, perspectives expressed within Bendy Bodies media, including this podcast, do not reflect the views or opinions held by Human Content Inc.
[56:54] Although we may share healthcare perspectives on this podcast, no statements made on Bendy Bodies should be considered medical advice. Listening to or watching this podcast does not constitute a doctor-patient relationship. Please always consult a qualified healthcare provider regarding your own care.
[57:09] For 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.