When POTS Isn’t the Whole Story: What Doctors Often Miss | Office Hours (Ep 185)

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Dr. Linda Bluestein: [00:00:00] So you just gave us a second awesome hack. I love that. That's really smart. Because you know, even if they're still alive, maybe they're in a situation where they no longer remember. So get that information while you can. That's a great idea.

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 Syndrome dedicated to helping you navigate joint hypermobility and live your best life. Today's episode was inspired by both a question from a listener, and also by one of my.

Fitness instructors who has pots, and I was sitting talking to her one night and she was telling me about her symptoms and I was like, huh, it sounds like maybe POTS isn't the whole story. So I would [00:01:00] really excited to have this episode today where we're gonna talk about pots imitators and some other things that people might wanna consider if they have pots and some other contributing factors that might be involved.

I'm also really excited to be joined today by one of the producers from Human Content Aron, who is even wearing his VIP Bendy Bodies merch. 

Aron Korney: There we go. Stein I I, I never take it off 

Dr. Linda Bluestein: you. You never take it off. I love it. I love it. What's up? 

Aron Korney: How's it going? Thanks for having me, accompany you today.

Dr. Linda Bluestein: Yeah, I'm super excited. This is gonna be fun. I want everyone to stick around until the very end so they don't miss any of our special hypermobility hacks. And as always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go.

Okay, we're back. And today we are going to be talking about pots, imitators pots, as you may or may not know, stands for postural [00:02:00] orthostatic Tachycardia syndrome. So that's when you go from sitting or laying down, and when you go upright, your heart races and you might have a number of other symptoms.

This is something that is super common in people who have joint hypermobility and related conditions, but there's other conditions that can mimic pots. So I thought it was really important to talk about this. I'm also gonna write a newsletter about this, so make sure that you're signed up at substack@hypermobilitymd.substack.com so you can also see the newsletter that corresponds to this episode.

Aron, you may know a lot of our listeners have brain fog or they might be multitasking, so I thought the newsletter might be helpful. Do you think that's a good idea? 

Aron Korney: Yeah, it's, it's cheesy, but the, the show doesn't just end when you turn off The episode keeps on going in your inbox. 

Dr. Linda Bluestein: We've gotten really great feedback on the newsletters and I'm so grateful to the human content team for, for helping with that, especially Ally.

She does such a terrific job in sprucing everything up. Ashanti knows, 'cause Shanti always sees like the raw, the raw [00:03:00] versions as they're, as they're evolving. So, okay, so we're gonna talk about POTS and how sometimes you might be undergoing treatment for pots, but it's not really helping as much as you would expect.

You might feel like you're doing everything right, but you're still struggling with POTS symptoms. And we know that POTS is definitely a real diagnosis, but it al is also a final common pathway for many different conditions. This episode is for you if your POTS treatment isn't working as well as it should, or if you feel like maybe POTS isn't.

The whole story today isn't about self diagnosing, it's about knowing when to ask better questions. So we're gonna talk about why pots can be mimicked or amplified by other conditions. We're gonna talk about the most common categories of imitators, red flags that suggest something else is contributing, how to advocate thoughtfully without overwhelming yourself or your clinician.

And I wanna tell you a little bit more about what inspired this episode. So I already mentioned about my fitness instructor who is telling me about her POS diagnosis, and I'm thinking, huh, sounds like there might be more to this story. [00:04:00] The other is a question from a listener that I think we're gonna have read by Aron.

So Aron, tell us what our listener asked. 

Aron Korney: Yeah, of course. And by the way, I, I like that we're gonna talk about imitators as well, because it just seems like there's, there's a lot of. Chance, obviously chance you could otherwise go to just like WebMD or like just go to Dr. Google and just not, not know if he just stood up too quickly versus like it being a serious thing.

So as a as as somebody who was learning a lot about it on episode today. 

Dr. Linda Bluestein: Yeah. 

Aron Korney: Alright. Here's the question. This is sent in by Rochelle. I was recently diagnosed with pernicious anemia and suspect I may have had it for years without knowing. I didn't realize how unreliable standard B12 blood tests can be, or how difficult B12 deficiency is to diagnose.

I also didn't know how pernicious anemia commonly co-occur with EDS and many of the symptoms overlap with me or cfs. I'm wondering about best practices for [00:05:00] diagnosis and treatment, how pernicious anemia interacts with EDS MCAS and pots, and whether there are things I should be monitoring regularly. 

Dr. Linda Bluestein: I love this question.

So Rochelle's question inspired me to do some research on pernicious anemia, and what happened was, as I was digging into it more and more, I realized that Rochelle's question was super important and that it could actually be almost an entire episode. We're gonna address a couple other questions at the end, but we're gonna spend most of the time talking about this particular topic today.

So I want to thank you all for sending in such fabulous questions because your feedback and your questions motivate me to dig deeper and create better content for you. So thank you, thank you, thank you to all the listeners for your incredible support and your incredible feedback and fabulous questions.

So let's first talk about what POTS actually is and what it isn't. So POTS describes a physiologic pattern where your heart rate goes. Excessively [00:06:00] fast, and has to be accompanied by some other symptoms. So it could be heat and cold intolerance, it could be, you know, digestive problems. There's a variety of things that can happen.

You can get dizzy when you stand up and things like that. And I love what you said at the beginning, Aron, because a super important point is that all of us can have this happen on occasion if we are dehydrated or if we've been sick recently, or if we've been, you know, maybe like on a really long flight.

So we've been just kind of sitting for a long time. So having this happen occasionally is not a problem. But for some people this happens all the time. They may faint or they may get near fainting, but fainting is not required. A lot of people have heard this myth that like, you have to faint in order to have pots.

No, you don't. So POTS is a problem with the autonomic nervous system or the automatic nervous system, and that's what controls all of the things that we don't think about. Our breathing, our digestion, our temperature regulation, the size of our pupils, our heart rate, blood [00:07:00] pressure, et cetera. So when someone does have pots, we know that they have a problem with their nervous system, but the diagnosis itself doesn't tell us why the nervous system is dysregulated, because there's multiple different conditions that can actually lead to the same autonomic output.

So POTS can be primary, secondary, or mixed. So it could, you could have POTS plus another driver. You could have just pots or you could have pots and other conditions. there's a saying, a person can have as many conditions as they damn well please. So unfortunately people can have multiple conditions.

So if we label the pattern, but we don't actually look for the driver, then we can. Really stall our progress. So we really wanna be looking for some other things. So number one, the first category that I want to think about because of Rochelle's question is nutrient deficiencies. And we know B12 is one of them because this was of course inspired by her question about B12 deficiency, but we're gonna talk about some others also.

But first, let's talk about B12 deficiency and [00:08:00] pernicious anemia. So this is a common reversible contributor to POTS like symptoms that is frequently missed because routine labs can actually be normal, especially early on in this condition. So there are several other nutrient deficiencies, as I mentioned, that can also impair autonomic and neurologic function and closely mimic pots.

But among those B12 deficiency, especially pernicious anemia, I feel like that deserves special attention because it is commonly under-recognized and frequently misinterpreted as quote just pots. Some of the other key deficiencies we wanna be thinking about include iron deficiency with or without anemia that can present as exercise intolerance, palpitations and dyspnea or shortness of breath.

Folate deficiency, which can present as fatigue and cognitive symptoms. And we know brain fog is super common in pots. Magnesium deficiency, which can present as palpitations, tremor, anxiety, also [00:09:00] things like portable sleeping, poor pain control, muscle cramps and things like that. Also, thiamine deficiency, which is vitamin B one.

And that can present with autonomic dysfunction, fatigue, and GI symptoms. And as I mentioned, B12 or pernicious anemia can present with fatigue, dizziness, neuropathy, brain fog, and tachycardia when we're deficient in that 

Aron Korney: is a fully deficiency, generally tied to pregnancy. I feel like I've, I've heard that, that the two go hand in hand, or maybe that's a folic acid deficit.

Dr. Linda Bluestein: So, women are told to take a folate supplement in pregnancy, and that is to prevent, spinal cord, problems in the baby, like, spina bifida. So. It's funny because that was something that was recommended quite a few years ago when there was not as much folate being supplemented in a lot of our foods and things like that.

But yes, you're right, there is a recommendation for that in pregnancy, and it's part of most multivitamins. 

Aron Korney: Okay, [00:10:00] so, so pos like symptoms could occur when you're pregnant then, and it could be due to that deficiency. 

Dr. Linda Bluestein: I would say that it's more that you wanna make sure that you, that you are at least sufficient in pregnancy and that's why they're recommended to take the folate more so that than that pregnant women are at higher risk of folate deficiency.

If some, if so, there's someone listening right now who disagrees with me, feel free to send me a message, but I don't think, I'm not an expert in pregnancy, but I don't think that women who are pregnant are at increased risk of folate deficiency. I think that the reason for a multivitamin, a prenatal multivitamin being recommended is to make sure that, you know, you're kind of covering your bases and you wanna make sure that you're, you know.

Have at least sufficient levels of a number of different nutrients, if that makes sense. 

Aron Korney: I would imagine there's a million comorbidities that come with different nutrient deficiencies during pregnancy anyway. 

Dr. Linda Bluestein: Right? Right. You're growing another human, so you wanna, you wanna make sure you're growing that human to the best of your abilities, [00:11:00] especially early on, because you know, little things early on can have a huge impact in that baby.

In the very beginning when it's developing all its organs and you know, things like that later on in the pregnancy, it's less critical. But in the early stages it's really important. So that's why they often say women who are even contemplating pregnancy should start taking a prenatal vitamin because you don't know.

You might get pregnant, you might not know for several weeks. Thank you for asking that question. That's a great point. Okay. So, so these deficiencies that I mentioned can directly affect autonomic and neurologic function and the symptom overlap with pots, as you heard me mention what a lot of the symptoms are.

They could be neurologic, they can involve brain fog, they can involve tachycardia. Like these are huge overlap in symptoms. And with a lot of these things, labs can appear normal or at least partly normal. so it's really, really important to be looking for these things because they're so often missed.

So now let's dig into pernicious anemia and why that is so often missed. So, pernicious anemia is [00:12:00] an autoimmune absorption disorder. It's not a dietary problem. The immune system attacks intrinsic factor and parietal cells in the GI tract, impairing B12 absorption, and the autoimmunity is present for years before classic lab abnormalities appear.

So some important factors about this are. The labs that we normally look for. And that's why I was blown away when I was looking this up. I was like, whoa, I didn't know a lot of this stuff. So we normally look at like the hemoglobin, 'cause if you hear anemia normally that means the hemoglobin is low, but the hemoglobin can be normal early on.

And something called the MCB, which gives you an idea about the size of the red blood cells. that can also be normal early on. Even the serum B12 and something called MNA or methylmalonic acid, that can also be normal. In fact, roughly 30 to 40% of B12 deficient patients never developed classic anemia.

And only about 60% of B12 deficient patients show an elevated MCB. So [00:13:00] I was not aware. I started doing all this research after Rochelle asked this question and, and I was blown away by all this information. That's why I was like, wow, we really have to talk about this. So why normal labs don't rule this out?

Number one, neurologic symptoms often come first. So things like the fatigue, brain fog, neuropathy, dizziness, and balance issues can proceed. The anemia and the changes in the labs can be late findings. Also, if we have large liver stores of B12, that can mask early disease, so the liver can actually store three to five years of vitamin B12, and during that time, absorption can be impaired, but serum or blood B12 and MMA or methylmalonic acid will actually remain normal.

The MMA actually reflects current deficiency, not future risk. So the MMA is only going to rise once intracellular B12 dependent reactions are impaired. So early disease or fluctuating absorption can leave MMA normal. also if you have normal renal function, a normal MMA [00:14:00] does not exclude early pernicious anemia.

So the MCV can also be easily masked. So B12. Deficiency causes the MCV to go up, but iron deficiency causes the MCV to go down, and this has to do with the size of your red blood cells. So the average can actually look normal because if you have two deficiencies, one that makes your red cells too big and one that makes your red cells too small, then on average they can actually look like they're normal.

So if you have coexisting iron deficiency inflammation or mixed deficiencies, that can actually normalize the MCV. But in that case, the red cell distribution width can actually be elevated, which tells you that you have a wide variety of red cell sizes. So early disease might not even reflect the red cell indices at all.

So when it comes to diagnosis, in addition to serum B12, some other tests that are useful can include, as I mentioned, the MMA homocysteine, intrinsic factor antibodies, which is highly [00:15:00] specific, and parietal cell antibodies, which is supportive but less specific. Remember, a normal B12 level does not exclude tissue level deficiency.

Aron Korney: You know, it, that, that makes me wonder, if that's fascinating. So if the liver is storing years of B12 and pernicious anemia results in a deficiency in B12, I would imagine, I don't know about other listeners. For me, I'm like, okay, well then that's, that's awful. Like I could, I could, I could be experiencing pernicious anemia for a long time and not even, not even have any tests showing it.

Plus what you're talking about with the blood cell sizing, which is, it's weird that, it's like, the law of averages gets you on that one. you know, I'd imagine just like an anxiety I have hearing that is like, okay, how would I, how would I, what should I be thinking about then or looking out for if, [00:16:00] the tests aren't even gonna show it?

I apologize if you've, if you've, you've covered that and it, it slipped, it flew over my head. But that's, that's kind of where my head goes is thinking about that. It's fascinating from a biology standpoint, but from a, you know, self-care standpoint, it's like, oh, that's, that's creepy. It can just sneak in there.

Dr. Linda Bluestein: Right? So I'm gonna tell you another caveat about this, and this is why Rochelle, thank you so much for your question. 'cause again, I was just blown away. The more I dug into this, the more I was like, this is important. So I have a family member, not gonna name them, but I have a family member who I've really helped a lot with their medical care, and they're not anemic.

Their MCV is normal, but their RDW has been crazy high for years and everyone ignores it because when most of us look at A CBC, which is a complete blood count, we look at the hemoglobin and the hematocrit, we look at the white cell count. Like there's certain things that we look at, but for the most part, we don't pay a whole lot of attention to the MCV if someone's not anemic.

And we often don't pay much attention to, [00:17:00] to the RDW. So when I learned this, I was like. Oh my gosh. So I sent a portal message to that person's doctor because I'm, like I said, very involved in their care. I sent a portal message and I said, would you please order these additional tests for my family member?

Because this RDW in this person has been high for years and they've checked this person's B12. And I think because of their age, like they're aware that they are at risk for B12 deficiency. But I think that, you know, this person being an internist might not be looking for the subtle signs like the elevated RDW and thinking about, you know, if you're.

Older and you're fatigued. It can be written off to a whole lot of things. So that's the other challenging thing is fatigue is a very non-specific symptom, but these tests are so easy to do. So if somebody is fatigued and they have, you know, maybe some of these other symptoms like brain fog, maybe they have some, you know, tingling in their extremities or something, which some people can really sense early on and other people don't.[00:18:00] 

doing the intrinsic factor antibody test and doing the parietal cell antibody test is something that is, you know, quite easy to do and probably covered by most insurance companies. So I think we should have a low threshold, 'cause those are just blood tests. It's, we're not talking about doing a, you know, a biopsy or some invasive procedure.

Aron Korney: It's fascinating how it's, it's fascinating how important this is for people to know about both, for self-advocacy then, and also as practitioners. It, it sounds like it's such a, a needle in a haystack thing to be looking for and thinking about. 

Dr. Linda Bluestein: And names can really throw us off. I, I feel like this is very much like vitamin D.

So vitamin D is not a vitamin, it's a hormone. Pernicious anemia doesn't always have anemia. 

Aron Korney: Yeah. I always knew of anemic. Right. You don't, I don't think of, B12 deficiencies or nerve nerve development and growth from that when I hear anemia. 

Dr. Linda Bluestein: Yeah. And, and I knew that the B12 levels that are optimal.

That's the other thing. When we look at lab values on a, [00:19:00] you know, a LabCorp or a Quest report. When they give us the normal range, that doesn't necessarily mean that it's the optimal range. So the optimal range for B12 is actually probably higher than what Quest and LabCorp and, you know, A URP and Mayo Clinic report.

So that's another important thing to consider. You know, your, your level might be in the low normal range, but that might not be in the optimal range. Okay? There are other causes of B12 deficiency besides pernicious anemia. So one of those is dietary insufficiency. And this is also super important because more and more people are vegan, vegetarian, et cetera.

So. People who are vegan and vegetarian are at increased risk of B12, deficiency. Also, malabsorption syndromes like celiac disease, inflammatory bowel disease, gastric or bariatric surgery, those will increase your risk. And there are also medication related causes. So I recommend H one and H two blockers all the time, but H two blockers can increase your risk [00:20:00] of B12 deficiency.

So can proton pump inhibitors, so drugs like omeprazole that are prescribed, sometimes almost like water people are prescribing these drugs, like here, just take this proton pump inhibitor indefinitely without really thinking about the point. those medications also can increase the risk of B12 deficiency, as can metformin, which is a diabetes drug that is also used for longevity and also chronic use of some antibiotics or anti-seizure medications.

Another thing that increased can increase the risk is chronic GI inflammation or dysbiosis. So, like I said, when I started digging into this, I was blown away and I was like, we definitely have to talk about this. 

Aron Korney: It's important. It's, it's feels like, it's like very good information to have. It's easy to start worrying, not like a hypochondriac edition, but more of just like a, it's, it feels like it's just so important to like, through you, I learned so much that I, it's like helpful to know about without worrying about it and, you know, being able to keep [00:21:00] attention on the right things.

I don't know if you have any advice on how, I'm trying to think about both how I'm feeling and I imagine a lot of the audience also who are advocates for themselves how to know which of these things to be nervous about paying attention to versus just being aware of, you know, like I hear you talking about, with like dietary insufficiencies with veganism and stuff.

I'm like, that's something I don't wanna bother all my friends who are aggressive vegans. But it's, you know, at, at what point are you being obnoxiously overcritical with it? 

Dr. Linda Bluestein: Exactly, and I often get my best ideas when I'm exercising. And I was at my exercise class this morning actually. It was the instructor who has pots.

I was in her class this morning and I was thinking, we need to do an entire episode. This is my plan for a soon to be coming solo episode on the most common mistakes that I see people make. And exactly what you just said is one of the things that so many of us end up doing. We end up chasing all these different threads and we don't know when to give up.

And I had a mom literally ask me yesterday for her [00:22:00] 15-year-old, she's like, how do I know like that? I should just try these things. And I said, well, we just met. We just had this coaching session. So I would recommend that you try the things that I am suggesting and don't go and have another appointment next week and start trying those things because you need to give these things time to.

Actually see if they work or not. So I guess one suggestion that I have for people is try not to ping pong from different things, but maybe as you learn about different things like pernicious anemia and B12 deficiency, maybe you put that on a list that like, if I'm not better in X, Y, Z number of months, I'm gonna revisit these things and maybe ask my doctor for some more testing if I think that I'm still having symptoms consistent with that diagnosis.

Because otherwise, yeah, you can drive yourself absolutely crazy. 

Aron Korney: Mm-hmm. I actually use, you know, all those like project management tools for tracking, like, oh, I have this task do and this task for like, work that people have. I actually have one that I [00:23:00] made a long time ago because I have, I have some chronic health issues and I actually do do that.

I actually have listed things that I learn about that I wanna look into, and I sort them, I'm like, okay, well these are the top three that I'll bring up in my next physical to like, deal with because I don't wanna drive my doctor crazy. And always constantly sorting those. So, especially if you're like really into heavy research on your own and you're becoming an armchair physician, I, I agree.

It's so easy to fall down that rabbit hole, suddenly diagnosing yourself with a million things and racking up healthcare costs that are needless 

Dr. Linda Bluestein: and causing yourself a lot of angst. You know, so many people, they, they feel so responsible because they know that their doctors are not. Able to take the time or invest the amount of energy like you are, you know, you care more, hopefully more about your health than anybody else.

So a lot of people, yes, they do deep, deep research and I do truly learn a ton from my patients and my clients because they'll bring things to me [00:24:00] and then I go and I research it independently. And I sometimes will message some of my patients or clients out of the blue and I'll be like, Hey, I just learned this particular thing, either from interviewing a guest on my podcast or something that someone else asked, and this other person will come to my mind.

And which is. One reason why I love the fact that my medical practice is small enough. I know everyone who's an active patient. And so I can be thinking, wait, is this something that I missed in this particular person? Maybe this is something that's going on with them. as I hear people talk about different things.

So I love that you have a way that you prioritize things like that because it does, it helps you and it helps your clinician and it helps ease your anxiety because the brain doesn't like unfinished projects, unfinished information. So if you take that and you put it on a spreadsheet somewhere, then that way you can put it out of your mind.

'cause now you know you have it written down and you know, you have your list of things to explore if you're kind of stalling out on your current treatment. 

Aron Korney: It's actually one of [00:25:00] the, the best things I feel about in healthcare. There's a lot of dangers with it, but I've noticed a lot of people I know use chat GPT actually to drop in their blood work or something and actually get comfort from just one other external processor to say, you know, like, you know, not for diagnosis.

And I'm sure you'd be the first to say it. I'll say it too, like I, like no one should ever rely on it for diagnosis. but I know a number of people, who as they're getting older and have so many things that you mean an eye on, use that as extra validation of like, okay, great, I'm not crazy. Like things are okay.

Dr. Linda Bluestein: Yeah. And, and it can be super helpful. I mean, I will have patients send me a message over the portal and they'll say, I looked this, I, I appreciate what it, when they're very, honest about this. I look this up on chat GPT, this is what chat GPT said, what do you think? You know? And and I often might put it in chat GPT myself, you know, to, 'cause it's a tool, it's a tool that all of us can use ai, right?

I mean, there's [00:26:00] obviously more other platforms besides chat, GBT, but you know, we can use these tools as a way of refining and, you know, really kind of distilling down and, you know, it's the whole junk in, junk out. The better information that you put in, in general, the better information that you get out and the more you learn to, to use these things and to take things with a grain of salt, but also, you know, kind of realize that, you know as much as you're giving that.

Tool information. They don't know the whole picture and they don't necessarily have like the clinical expertise. 'cause one of the things that we're gonna talk about, so I recently hired a PA to join me on the Bendy Bodies team and she is also, doing coaching and her name is Rebecca Gluck and I'm so excited to have her on the team.

And one of the things we're gonna do, we're gonna do a webinar and in particular we're gonna be talking about why coaching is still important to do even though we have things like chat DPT, because there's still things that we can add to your whole plan, even though you have access to [00:27:00] these great AI tools.

Aron Korney: Yeah. Yeah. I think it could be used as a tool for, for comfort of knowing you're being diligent rather than being reliant on it. 

Dr. Linda Bluestein: Mm-hmm. Yeah, exactly. Exactly. Cool. 

Aron Korney: Thanks for sharing your thoughts on that. 

Dr. Linda Bluestein: Yeah, of course, of course. I love that. So that's, that's a great tip. In fact, that's a great hypermobility hack right there that you just shared.

I think we probably have a hack for at the end of this episode, but you gave us a great hack and I love that. Okay. So I wanna mention something here about mast cell activation syndrome. So for people that have mast cell activation, they might have more inflammation in their GI tract and that can actually cause more absorption problems.

So that can increase your risk of B12 deficiency and or you might react poorly to supplements with B12. So if you have MCAS, you might wanna think about that too, and how that actually might also influence your levels of B12 in your body. Some people do better with injections or preservative-free formulations.

And if you have a symptom flare, that doesn't necessarily mean that you need more B12. I've had some people [00:28:00] take crazy amounts of B12. In fact, I had somebody the other day that I saw as a patient like, why are you taking so much B12? And she's like, I don't know. So always important to be thinking about the supplements that you're taking.

What dose are you taking? Why are you taking it? What are the possible negative effects of supplementation and what, what dose is appropriate for you? 'cause that's where it can be really tricky and where you might look things up, but maybe you're not giving it all the information. So you're trying to look this up like on chat GPT, but you're not getting the full picture.

So this matters a lot in POTS because again, B12 deficiency can worsen those symptoms. So you could have B12 deficiency and pots. So treating your B12 deficiency might not completely resolve all your symptoms, but if you miss it, that could significantly mi limit your improvement. If you do have pernicious anemia, that typically requires lifelong B12 replacement and periodic monitoring is extremely important, especially if your symptoms evolve or if you have other autoimmune conditions.

Okay, so a [00:29:00] takeaway for this is if you have persistent fatigue or neurologic symptoms, especially with EDS pots ECFS, autoimmune disease. GI disorders are older age normal routine labs do not rule out B12 deficiency. Ask about testing beyond a standard B12 level, including intrinsic factor and parietal cell antibodies.

Okay, so let's shift gears and talk a little bit about thiamine deficiency in pots and EDS. thiamine is of, as I mentioned, vitamin B one, and it is essential for cellular energy production, mitochondrial function, and autonomic nervous system regulation. Deficiency of thiamin or B one can impair energy metabolism and autonomic stability and produce symptoms that either closely mimic or worsen pots.

Some of those symptoms include fatigue and severe exercise intolerance, brain fog, and cognitive slowing, dizziness and orthostatic intolerance, tachycardia, which is fast heart rate and palpitations, GI dysmotility, and nausea and bloating or [00:30:00] neuropathic symptoms, weakness or heaviness in the lymphs.

People with EDS or pots might be at higher risk for thiamine deficiency because of a few things. Number one, restricted or limited diets. Two chronic GI symptoms and malabsorption. Also increased metabolic demand from chronic illness, also prolonged physiologic stress. And lastly, post-infectious or inflammatory states.

So somebody on Substack recently asked me this question about thiamine deficiency, and I told her, perfect. I'm gonna add this into my solo episode that I'm recording tomorrow. Some red flags we wanna think about that should raise suspicion for thiamine deficiency include disproportionate fatigue compared to orthostatic findings.

Rapid exhaustion or worsening symptoms with minimal exertion, prominent GI dys mortality with poor intake. Neurologic symptoms not explained by imaging or routine labs, autonomic symptoms that worsen during illness or stress. Minimal response to typical POTS therapies or partial or incomplete response to B12 or iron repletion like and pernicious [00:31:00] anemia.

And B12 deficiency. Thia deficiency can also exist when routine labs are normal. So this makes this really, really tricky. Earlier functional deficiency might not be captured by standard blood tests and symptoms can often proceed Laboratory abnormalities. Testing that you wanna consider includes whole blood thiamine levels, which is preferred over serum levels.

Erythrocyte trans keto activity, which is a functional assessment, not always available in every lab. And you also wanna consider testing in the context of symptoms, not just as a screening test alone. So normal levels do not fully exclude functional deficiency, especially if you have chronic illness. So both thiamine and B12 deficiency.

Both of these can cause fatigue, brain fog, neuropathy, and autonomic symptoms. B12 deficiency more often causes sensory neuropathy and anemia, but that's often late. Thiam deficiency more often causes problems with energy metabolism and autonomic stability, but both can coexist and compound symptoms. So thiamine [00:32:00] deficiency doesn't cause pods, but it's can significantly worsen it or mimic it by impairing cellular energy and autonomic regulation.

So do you have a question, Aron, or should we take a quick break? I 

Aron Korney: think, the, the only question I had, which I don't know if anyone's gonna wonder this, but you were talking about, one of the testings is for this is, one of the ways to test for thine deficiency is through, testing a certain kind of activity.

how did you say that? What was that? a SKO light. Something like that. 

Dr. Linda Bluestein: Trans keto. Trans keto, I think I'm saying that right. Erythrocyte trans keto activity. 

Aron Korney: Erythrocyte what? Do you know what that is? I'm curious what that is. 

Dr. Linda Bluestein: Yeah, so erythrocytes are red blood cells. but I honestly had never heard of this test before, so, 

Aron Korney: yeah, me neither.

I was just curious. It's interesting. 

Dr. Linda Bluestein: Yeah, yeah, yeah. Super interesting. Okay. How about we take a quick break and when we [00:33:00] come back, we're gonna talk about some other pots mimics. We'll be right back.

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Whether you're shopping for yourself or someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bebo boutique.com. Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again and enjoy the rest of the episode.[00:34:00] 

Okay, so we're back and we are joined today by Aron, who's one of the producers from Human Content, and I'm so happy to have you here. Aron. Thank you so much for joining me. 

Aron Korney: Glad to be here and thanks for, bearing with my questions. I'm, I'm definitely very curious about all this. 

Dr. Linda Bluestein: It's one of those things where the more you learn, the more you realize that you don't know.

In fact, one of our guests the other day, yeah, we, we interviewed Dr. Rachel Rubin last week and she literally said, the more I learn, the more I realize. I don't know. And I feel like that every day. And the funny thing was we interviewed the following day, Dr. Andrew Callen, who literally said the exact same thing.

And I was like, wow. It's, it's, it's definitely a thing. Okay, so let's talk 

Aron Korney: Older people know how dumb they're, right. 

Dr. Linda Bluestein: Yes. Like, I hope that that's the case. I, I hope that it's that and not just like, that's how little we actually know. Okay, so next let's talk about endocrine and hormonal mimics. So we know that, things like thyroid disease, so you can be [00:35:00] hypothyroid, you can be hyperthyroid.

So meaning that your thyroid is either underactive or overactive. And both of those can affect your heart rate, your blood pressure, your temperature tolerance, and things like that. So either one can make it more likely to think that you have pots, although being hyperthyroid is more likely to raise your heart rate and make you intolerant to heat.

And, you know, that's probably more consistent with like a POTS diagnosis or a pots mimicker rather than hypothyroidism. You asked earlier about pregnancy, and an interesting thing about pregnancy is that after pregnancy you can get, postpartum thyroiditis. And this happened to me. So I made antibodies to my own thyroid gland.

So after pregnancy, I was first hyperthyroid. Then I became hypothyroid, and my husband likes to tell the story that when I was hyperthyroid, I was like, not in a rush to see an endocrinologist, because I was like losing weight. And although I was more anxious than normal, I was like, you know, this is great.

I'm losing the pregnancy weight, et cetera. And then literally I woke up one morning and I could tell my thyroid had [00:36:00] shut off and I was suddenly hypothyroid. And I, I knew it. I knew for a fact that that's what had happened, even though I didn't understand, I didn't know what postpartum thyroiditis was, but I saw the endocrinologist at the hospital, he did the labs, and it turned out it was right.

I was hypothyroid. And now all of a sudden I'm like, this is a medical emergency. Because you know, you're lethargic, you're gaining weight and things like that. So anyway, so thyroid disease is definitely an important mimicker of pots, especially hyperthyroidism. And sometimes we need to do more than just check the TSH in order to determine if a person is hyperthyroid.

And we also need to check things like antibodies, to look for things like Hashimoto's. another thing is adrenal insufficiency. So our adrenal glands sit on top of our kidneys and they make all kinds of important hormones. And we can have relative adrenal insufficiency or we can have complete adrenal failure.

But either one of those can cause severe fatigue and, brain fog and all kinds of symptoms that can look like pots. [00:37:00] Also diabetes and prediabetes can cause autonomic neuropathy. We also wanna be thinking about perimenopause, menopause, and other hormone fluctuations. So these endocrine things are really, really important to be thinking about.

And there are things that a lot of doctors wouldn't necessarily be considering when they're evaluating you for possible pots, especially if you go to a cardiologist, because a lot of cardiologists, you know, they're gonna be so focused on the heart, understandably, that's their area of expertise, right? So they might not be the right person to ask, you know, could my hormones be involved?

But maybe you could ask them for a referral to an endocrinologist if they see you and they're like, no, I don't think it's pots, or, I don't think What we're finding here is explaining your symptoms. 

Aron Korney: I can imagine it could also be misconstrued as, potentially narcoleptic. 

Dr. Linda Bluestein: Interesting. Huh? Yeah, that's an interesting one that people with, with sleep problems can definitely have severe worsening of their pots and if you don't treat the underlying sleep problems, you're not gonna make improvements on the [00:38:00] on the pots.

And yeah, narcolepsy would definitely be another thing to consider in there. Yeah, that's really 

Aron Korney: just seems like it could really mask it. 

Dr. Linda Bluestein: Mm-hmm. Yeah. Yeah, yeah, definitely. if your symptoms are fluctuating a lot, you definitely wanna be considering hormones. The next thing we wanna talk about is mast cell activation and histamine disorders.

So we don't wanna turn everything into MCAS. I feel like sometimes, you know, it might sound like I'm doing that, but there are a lot of things that can involve mast cell activation and, or, you know, present like mast cell activation type problems. So some of the things that we might see here include flushing, tachycardia, pres, syncope.

We might see gastrointestinal symptoms that are triggered by food stress or other environmental factors. There's people who can't go down the. You know, detergent aisle at target because it literally makes them sick. So those kind of people definitely have mast cells that are more sensitive and or they have multiple chemical intolerance.

Other things that can come along with mast cell activation include temperature [00:39:00] sensitivity, itching and anxiety. So mast cells can drive POTS like symptoms or can coexist with pots. And we know that mast cell mediators, of which there are over a thousand, can actually destabilize heart rate and blood pressure.

Things like meals, heat stress, infections, and medications are common triggers. So treating mast cell activation can significantly reduce autonomic symptom burden. So if symptoms worsen after environmental exposures, meals, heat, or stress, mast cells should definitely be a part of the conversation. Okay, so the next section we wanna be thinking about is cardiopulmonary concerns and medication effects.

So there can be primary cardiac causes of tachycardia, things like inappropriate sinus tachycardia, supra ventricular arrhythmias, which are abnormal heart rhythms that start from the top part of the heart. So the heart has four chambers, two top chambers, two bottom chambers, spr, ventricular arrhythmias, start in the top chambers.

you can also have structural heart disease, which is very rare, but that's also an important [00:40:00] consideration. Also, pulmonary disease or deconditioning after an illness, which we already kinda mentioned earlier. So, if a person has sustained tachycardia at rest, it's important to get a cardiac evaluation.

We also wanna think about medication effects, but also medication withdrawal. So I think we really, really often think about what happens when we start a medication, but we often don't think about what happens when we are weaning off or stopping one. So I think most people know caffeine can raise the heart rate, but things like SSRIs or S NRIs can also affect the heart rate, when you're starting or stopping them.

Also, benzodiazepines things like alprazolam, or Xanax, can also influence this. drugs like Valium, also antihypertensives and diuretics. So you always wanna look at the timing of the symptom on onset because that can give you important clues. Also, while remembering that sometimes the thing that started the problem is not the thing that perpetuates the problem, we're almost done with these pots mimics.

But the next section is sleep, chronic infection and post-infectious syndromes. [00:41:00] Sleep apnea, insomnia and circadian rhythm disruption are important as is non-restorative sleep. Also postviral syndromes including long COVID and chronic or reactivated infections can also cause pots like symptoms. Poor sleep can destabilize autonomic regulation and post-infectious autonomic dysfunction is common and often underrecognized if you do have symptom onset after infection.

That is a very important clue as we talked about earlier. All other treatments will fail if poor sleep is not addressed. I wanna talk a little bit about neurologic and autoimmune conditions. These are also important to consider things like small fiber neuropathy, which we know is a lot more common in people with EDS and HSD.

Cervical spine instability or compression is very important also because the sympathetic chain runs down the front of the neck. So instability in the cervical spine can cause problems with that sympathetic chain. Also, chira malformation or chira deformity, which is where the brainstem isn't fully encased within the.

Skull, but it actually sags and can [00:42:00] actually, be coming a little bit through the frame. And magnum, which is the hole at the base of the skull. Also, things like neurodegenerative diseases and things like stiff man syndrome. Some of the autoimmune considerations include Sjogren's syndrome, lupus, celiac disease, and autoimmune autonomic ganglio neuropathy.

So if you have sensory symptoms plus autonomic symptoms, that might be pointing to a neurologic driver. Red flags would include progressive neurologic changes, new weakness, balance issues, or sensory loss. Things like dry eyes, dry mouth, or malabsorption can also suggest autoimmune disease. Red flags that should prompt a broader workup include symptom worsening despite appropriate POTS treatment, severe fatigue outta proportion to other findings, neurologic symptoms, signs of GI male absorption, weight loss or nutritional abnormalities, nighttime tachycardia symptoms at rest or without position changes, new onset later in life.

Strong personal or family autonomic history and lab patterns that don't quite fit. For example, the elevated RDW low ferritin or borderline B12. This doesn't [00:43:00] automatically mean that something is dangerous, and as we said, sometimes it's a good idea to park things, right, so you park them like Aron suggested.

I love that. That's, that's probably your best hack for the day. because we wanna make sure that we're not missing things, but at the same time, we don't wanna drive ourselves crazy with chasing down every little, you know, possibility. 

Aron Korney: Yeah. Also, I'd imagine one thing you've mentioned there is interesting to me, which is, just family history.

A lot of people seem to wait until things are bad before they look into a family history of any particular condition. and I, again, I am, I am not a healthcare provider. I'm a podcast producer, so take this all with a grain of salt, but I, I definitely have become a big advocate of, while family members and relatives are alive and functional, get the family histories is something I've been learning.

Just my understanding is that the more you know for that, the more you can tell your, your provider to help [00:44:00] figure out these genetic trends. I don't know if that's something you've dealt with with patients and everyone else, but, I, it, it took me a long time in life before I actually stopped and actually compiled all that information across all my relatives to figure out actually what trends existed that I didn't even know in my genetics.

Dr. Linda Bluestein: Okay, so you just gave us a second awesome hack. I love that. That's really smart. Because you know, even if they're still alive, maybe they're in a situation where they no longer remember. So get that information while you can. That's a great idea. 

Aron Korney: I'm lucky I have an anxious mother, so I had to do, say anyone's sick in our family and she gave me a whole essay on, on everyone back through Eastern Europe to now, so, 

Dr. Linda Bluestein: yep.

And then there's other people that you really have to pull it out of them, and so it's important to keep that in mind. Yeah. Speaking of anxiety, things like psychologic stress and trauma, they don't cause pods, but they can definitely amplify the symptoms. So it's important to also keep that in mind.

People who have chronic stress, some of us just stay [00:45:00] in a threatened state in our nervous system, like our nervous system does not feel safe. So if you can employ some tools, and there's lots of tools out there like vagus nerve stimulation and you know, breathing techniques, humming, singing, like some of these things that can activate the parasympathetic nervous system that can help our nervous system feel safe, and that can really help with our pots like symptoms.

Aron Korney: Yeah. Yeah. I would imagine just also these days, everyone's a little, a little on edge, a little stressed, with so much going on and so much more news than ever, that we're bombarded by and, how much extra stimulus there is from all of the electronics we're using and everything else. So I would imagine it, it's, it, it seems more and more that it's not even a.

Good piece of advice. It's almost like a mandatory, if you're gonna exist in this world and be functional and stable, you need to have those solutions in place. You need to have a breathing exercise. You need to have, self care routines. That's at least what I've been, I've been seeing and [00:46:00] I don't know, or, or, or my Instagram algorithm just knows I'm anxious and send me all those things.

But that's what it looks like is that it's, it's a, it's a non-optional thing at this point to, to exist in the modern world, comfortably. 

Dr. Linda Bluestein: And, and what I love about what you just said is that what we really wanna be doing is practicing these things when we're less stressed, so that when we're more stressed, we already have the tools in our toolbox and we can employ it more easily if we wait until we're at our worst.

Then we try to do breathing exercises or whatever, and we don't normally do those things. We're gonna have less success than if we've already practiced it when we're in a little better state. 

Aron Korney: Yeah, I actually, I I, I didn't put it on for this episode. I have this little necklace here. It looks like a little whistle, but it's just a, it's a, it's a metal tube and it's for cyclical breathing exercises.

And I wear it wear to remind myself to do breathing exercises if I'm not being mindful of it. So, you know, if I'm changing my shirt and I see my necklace, it reminds me to, oh, stop and do that. so sometimes it [00:47:00] helps to have external timers or, or little totems or things to help you remember to do it.

'cause once you're in the anxious, repetitive rinse and repeat state, you might forget to stop and do it. So it's good to have externalized tools, at least I've found for that. 

Dr. Linda Bluestein: I totally agree. And it, it, it's amazing to me how really small things like that can really make a significant difference. 

Aron Korney: It's, it's a good thing to do with your partner too, is, is, is become each other's, not just for exercise and diet, for accountability buddies, but whether it's a partner or a friend or a relative, have someone that you guys each remind each other.

Dr. Linda Bluestein: Mm-hmm. Mm-hmm. Love that. That's brilliant. 

Aron Korney: That's your, that's your, that's your healthcare advice from your, your friendly local podcast producer. Take it as you will. 

Dr. Linda Bluestein: Yeah. Love it. Love it. Okay, so next, Aron, will you read to us? Will you read to us? Sounds like I'm asking you to read a bedtime 

Aron Korney: story. We'll be glad to read you a story.

Yes. Get into bed. Pull up the sheets, get comfy. 

Dr. Linda Bluestein: Perfect. Okay, so I think we have a voicemail that you're gonna read to [00:48:00] us. 

Aron Korney: I am, I'm not gonna do an impression, but this is from Evelyn. I, we can pretend Evelyn sounds just like me. Okay. Alright. Hi, Dr. Bluestein. I recommend to a lot of people who I meet that they listen to this podcast because of how much great information is in it.

I agree. that was me. Unfortunately, some of these people are new to the world of hypermobility and EDS. The amount of information in just the number of episodes that you have is overwhelming. Would it be possible for you to identify maybe three or four episodes of quote, getting started and tag them somewhere on your website?

I think that would be a great help for people who are just getting started and learning about hypermobility. Thank you. Good question. It's, I wanna know your answer to that too. That's a, that's a fair point. 

Dr. Linda Bluestein: Yeah. So I have to confess when I read this question and then I went looking for episodes and I was like, oh, there's, there's a lot and.

The more recent episodes, I feel like are often the better episodes, but at the same time they're, they're deep dives and they're, [00:49:00] you know, at a level that for the average like person that's just starting out are, are not appropriate. So I love this question from Evelyn. Evelyn, thank you so much. I am going to plan future episodes.

In fact, I think we talked about that a little bit at the beginning. common mistakes, kind of some like one-on-one type information. So I'm definitely gonna plan that. Also go to my Substack newsletter 'cause I'm also, based on Evelyn's question, I'm also gonna be putting some things there. but I think the three episodes that I chose were kind of the closest that I could pick.

So, I'm probably not giving them the most craving review right now, but, but I, I think Dr. Matthew Wado, which was episode 1 33, he's an internist and I was on his podcast and I know. That, that podcast curbside that I was on to discuss, you know, EDS and HSD. When I last talked to them, like something like over 40,000 people had listened to that episode and then he came on.

That 

Aron Korney: conversation resonated with a lot of folks. Yeah. Yes. Yeah, [00:50:00] that's a good, that's a good one to recommend. I agree. 

Dr. Linda Bluestein: Yeah. Yeah. So both the curbside episode that I was on and when he came on my show, this show, and that was episode 1 33 when he came on this show. I would say the other two episodes that I would recommend are episode 1 29 with Dr.

Jill Carnahan, where we talked about mast cells and hidden triggers. And what I liked about this episode was the fact that she talked about addressing the nervous system first. Because one of the questions I wanted to ask her was, you know, what do you do when you have all these symptoms and all these problems?

And so I think that's a good episode for people to start with, even though it has some, you know, high level information. And also episode one 20 with Wendy Wagner, finding the right pt because so many people have tried pt, but they say, you know, it either didn't work well enough for me, or a lot of people will say it actually.

Me worse. But oftentimes it's a matter of finding the right physical therapist. I tell people it's like dating, don't just give up the first time that you, you know, go on a date with somebody. You might have to try out a few people before you find [00:51:00] the right one. So that episode with Wendy Wagner is episode one 20 and it's really important because physical therapy is a cornerstone of treatment for EDS and HSD, but it also is important to find the right physical therapist.

You might not find the right physical therapist on the first try. So definitely check out that episode as well. And thank you so much to Evelyn for this fantastic question. I will be creating more content to address your questions, so stay tuned for that. 

Aron Korney: Dr. Bluestein, I have a question for you. 

Dr. Linda Bluestein: Sure. 

Aron Korney: How are you with receiving compliments on the air?

Because I really wanna read you one more letter. but you know, we can do the best, we can have our editor do color correction for the blushing, but you might have to just sit there. Can you handle this? I really wanna read you this one. Okay. This is what happens when you invite me on. I'm, I'm gonna, I'm gonna read you some praise.

Alright, dear Dr. Bluestein, I heard about your podcast earlier this year in a local EDS Facebook group, and I've gone back and heard almost all of the episodes. I'm a family physician who moved to the US [00:52:00] from Canada, and a patient with a quote trifecta amongst other conditions. I just wanna say that not only are you a fantastic podcast host.

You know, just the right amount of questions and types of questions to ask, when to interject and when to allow the person to speak. You are also doing a fantastic service to all of us as both physicians caring for patients to learn from you and to EVs patients everywhere. I know a ton of work goes on in the background to make this happen, so I wanted to express my deep appreciation for you.

I've learned so much that I've gone on to research and all that zebra knowledge is inevitably making me a better doctor, but also helping my personal care. I was personally also touched by you sharing your story. It has been a difficult help journey for me as well, and it always helps for us to know that we're now alone in our experiences, even when we experience gaslighting, when we are positioned ourselves.

That type of validation and knowing that someone who is looked up to and amazing at what you do that you could also experience that too, really helped me. I'm truly sorry you experienced [00:53:00] everything you did. I hope that people like me who reach out to remind you to keep going and doing this work, I hope we get to meet in person someday.

This is from man pre and I couldn't agree more. 

Dr. Linda Bluestein: That is so sweet. And I've, I say this all the time when I get comments like that, it really, that really means the world to me, man. Pre thank you so much because, you know, it is a lot of work and of course, having people like Aron and Shanti and Rob makes it so much better, but at the same time, it's a lot of work.

So, so it's literally comments like that that keep me going, so thank you so very much. 

Aron Korney: You guys, we didn't discuss this in advance, so I'm just saying this, and Dr. Bluestein would probably have said, oh no, but it really is true. Everyone, Dr. Bluestein, she lives and brings, bringing you guys this show and doing it as best as possible and making sure this is a value to you all.

So, I'm sorry if I'm making you uncomfortable, Dr. B, but as, as one of your producers and as party routine, like we, [00:54:00] we we're led by you, like your passion. And when you get letters from people saying, I dunno where to begin because there's so many episodes, that's a great problem to have. Like you've really, you've really poured your heart and soul into this show and it shows, 

Dr. Linda Bluestein: oh, that's so sweet.

I'm gonna cry. That's really sweet. You won't, to hide the blushing, you'll have to hide the, the crying. That's really sweet. Thank you so much. And I, I couldn't do it without you guys, so I really appreciate all of you. It's a amazing to be able to think about creating the content, writing up questions, and you know, who do I wanna have on the show?

And then not having to worry about anything else is really, really huge. 

Aron Korney: Keep writing to our team, everyone listening, like we're all, you might not, you know, there's only so many hours in the day for us to get everything on air to Dr. V, but we're all, we're all saying like, it encourages all of us, everything you guys write and say, it's, it's a real community.

Dr. Linda Bluestein: Yeah, it is. It's huge. It's really, really helpful 'cause we will use that information to write newsletters. We use it to create social media posts and we do keep track of which questions we've answered on air, which ones we haven't. So if we [00:55:00] haven't answered your question yet on air, I guess I have a couple suggestions.

One, you can submit it again. two, you can be patient, but, but you know, feel free to submit it again if you want. So before we wrap up, I also wanted to share a small but meaningful example of representation that I think, you know, many people in the EDS community will recognize and they're gonna know what I'm talking about right away because this is something from a Netflix show that gets ambulatory wheelchair use, right?

without explanation, without judgment. it's a show called Runaway that was recently. Introduced on Netflix and they do something that's often misunderstood. There's a character named Anya in the show, and she's shown using a wheelchair in some scenes and standing or walking wi in other scenes, but there's no commentary about it.

Some viewers initially assumed that this was a mistake, but for people with EDS and other chronic conditions, they know that this is very real. They know that their mobility needs change from day to day, even hour to hour, depending on pain, fatigue, dizziness, and joint instability. What makes this especially meaningful is that the [00:56:00] actress who plays Anya, Ellie Henry, actually lives with EDS herself and uses a wheelchair in everyday real life.

So the show didn't turn her disability into a plot point or something that needed to be explained. It was simply a part of the character's life. This kind of representation really matters. Mobility aids aren't a sign of giving up, and they aren't only for people who can never walk. So I love this 'cause for many people, wheelchairs are a tool and they can use this tool for conserving energy, reducing pain, and staying engaged in daily life.

Seeing this portrayed accurately really helped normalize the reality that disability isn't binary. You can sometimes walk and still genuinely need a wheelchair, and that doesn't require justifications. So I wanna say thank you to the writers, producers, and everyone involved in Runaway for getting this right.

It might seem like a small detail, but for people in the Idiots community, this kind of quiet accuracy is really validating and really matters. 

Aron Korney: So if you know anyone who works on the show, tell them to come on air and talk about it with us. 

Dr. Linda Bluestein: Yeah, exactly. [00:57:00] It would be interesting to hear how they. You know how that all evolved, right?

Wouldn't that be interesting? 

Aron Korney: I got through the writer's room too because someone had to advocate that plot line. I'm sure it took someone advocating on breaking bad for Walt to, you know, cover the subject matter of having a, a, a son with various needs. But that he, that was almost never the main plot point of the character like this is the more, the more, representation in media, the, the better to normalize what constitutes disability and just differences, in lifestyle.

Dr. Linda Bluestein: For sure. And that leads me to the hypermobility hack, which is directly related to what I just was talking about in this Netflix show. You might have been told at some point to not use pain tools, things like braces, mobility aids, and other supports. I took a family member to one of these, you know, pain programs that was, I think it was three days long.

During that time we were, we kept getting sold to like trying to get sold for their three week program. But one of the things [00:58:00] that they taught us was, don't use these pain tools. Don't be signaling to everyone that you have a problem. And while I understand what the message was they were trying to share, and maybe this approach can be useful in some situations, it doesn't apply to everyone and it doesn't necessarily fit people with connective tissue disorders or structural instability.

'cause for many of us, with EDS and other fluctuating conditions, these mobility aids, we're not using them as a reminder of our pain. But they're tools to actually reduce mechanical stress, prevent flares, and allow our nervous system to stay calmer. Using a support when we need it can actually help decrease pain input and make it easier to stay active and engaged rather than pushing through and paying for it later.

So when I went to my exercise class this morning, I was. Kind of covered in braces. I had both of my knee braces on, which I pretty much always wear. but, but today I, my elbow was hurting, my wrist was hurting, so I had more braces on than usual. And some of these people would say, you shouldn't do that.

And I think that's wrong. And, [00:59:00] bad advice. The goal isn't necessarily to avoid these tools at all costs, but to use the right tools at the right time for the right reasons. If something helps you conserve care, move more safely or participate in your life, that's not reinforcing pain. That's smart.

Adaptive self-care. So that's your hack for the day. Aron, this was super fun. 

Aron Korney: Dr. Bluestein. Thank you for having me on. It was fun to do this with you. 

Dr. Linda Bluestein: So that's it for today's episode. Thank you so much for your fantastic questions. Please keep sending them into bendy bodies podcast.com for a chance to be featured in a future episode.

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@hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it.

These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget. [01:00:00] Full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them.

You can learn more about these options on the servicesPage@hypermobilitymd.com. You can find me Dera Linda Bluestein on Instagram, Facebook, TikTok. X and LinkedIn all at hypermobility md. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also wanna share some of their helpful resources for questions or appointment inquiries.

You can contact the UVA EDS Center at our UVA EDS center@uvahealth.org. Again, that's the letter R as in Robert uva, EDS center@uvahealth.org. You can find answers to common questions at uva health.com/support/ EDS slash faq. Our incredible production team is human content. You can find them on TikTok and Instagram at Human Content Pods.

As you know, we [01:01:00] love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy bodies team. Although we may share healthcare perspectives on the podcast, no statements made on bendy bodies should be considered medical advice.

Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies Program, disclaim and. Ethics policy, submission verification, licensing terms, HIPAA release terms, or to get in touch with us, please visit bendy bodies podcast.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.

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