Nervous System Regulation and Hope

Welcome to Everyday Wellness podcast. I'm your host, nurse practitioner, Cynthia Thurlow. This podcast is designed to educate, empower and inspire you to achieve your health and wellness goals. My goal and intent is to provide you with the best content and conversations from leaders in the health and wellness industry each week and impact over a million lives Today I have the honor of connecting with Dr. Linda Blustein, who is a board certified anesthesiologist and integrative pain medicine physician who specializes in airls downlad syndromes hypermobility spectrum disorders and related conditions such as pOTs, mast cell activation and chronic pain. I will preemptively apologize to all of my community that for some reason my notifications kept going off during this recording. I always have them shut off. I don't know why that didn't happen. So Don't leave me a bad podcast, review. Just understand that I'm human Today, we spoke about the invisible illness problem as well as complex medical illnesses How her own diagnosis of EDS in her forties allowed her to pivot her career to really focus deeply on what is missing in medicine with regard to these complex medical illnesses D differenterent types of hypermobility conditions. why women are disproportionately affected by these conditions versus men, what hypermobility means The cluster of EDS Pots and MCAS. What to do when you have unexplained multi system symptoms and how AI can be beneficial pain science and hypermobility What is sympathetic overdrive? Cisopphobia How anesthesia may not work the same in patients with connective tissue disorders The impact of midlife transitions, HRT Medical gas lightighting nervous system regulation as well as movement and nutrition. And last but not least Validation and hope for patients with complex medical illnesses I've been asked to record with doctor Blustein multiple times. I'm so glad to have been able to bring this conversation to the everyday wellness community, and I hope to bring her back to further the conversation in the future I'm Dctor Blustin. welcome to the podcast. I've really been looking forward to recording with you and to let you know transparently, my community has asked me to interview you about twenty times. Oh my gosh. Wellow, you made my day, That's so sweet Yeah. no, I'm so glad that we were able to connect. So let's talk about these this invisible inness problem because As I was sharing with you transparently, I trained at a medical institution where we saw a lot of the extremes and I felt very confident. I knew what Airlo' Danlos was, I knew what that represented. And yet I now humbly sit back and realize there's a whole lot more to this conversation. but I think so many patients are doing the right things and they're not getting the answers that they need. And I know your own journey contributes to your area of focus now Yes, it does. and it's so frustrating for people because they feel like they have all these symptoms and nobody's connecting the dots. They go from specialist to specialist and each one looks at things through their own lens. Nobody looks at the whole person, and yet they continue to suffer. and it's really, really frustrating. They often get blamed when treatments don't work and And they feel terrible because they just want to feel better. And you know we often doubt ourselves when other people doubt us. So if somebody says, oh, well, you just didn't do that right, you know it's very easy to think, well, maybe I didn't do that right Absolutely interesting to me because I think the one thing that I have learned, especially working with an integrative practitioner is that there are these spectrums that we go through. And I think depending on where people are in their journey, are they at the beginning of their journey, the middle of their journey, late into their journey where they've seen many, many specialists. They've traveled all over the country and haven't gotten answers. And I know that you were initially board certified in anesthesia and it was your own diagnoses of heads in your forties that actually you know brought you to the forefront of really being able to look transparently at unique complex medical problems from a very different lens And I would imagine as an aesthesiologist probably didn't learn any of the things that you're focusing in on today. And I say that with like great respect and reverence, I just think that I learned little to nothing other than the extremes that I saw in my medical training myself. Yeah, it is very interesting because I never planned on being an EDS specialist, POT specialist, MCAS specialist. I did not think this was going to happen. But even while I was still practicing in the operating room justust becoming more aware of these conditions, I started to see things in a different light. So I had a very close family member that was diagnosed with the POTs And I remember being at work one day and seeing this young man who was using a lot of cannabis for severe anxiety And I don't know exactly when the bells went off, but I did start to think, I wonder if he could have pots. hisis heart rate was very fast even before he came into the operating room. And after he went to sleep, his blood pressure went down not a terrible amount because you when you're young, you can still adit. But his entidal CO two, his carbon dioxide that he was putting out was very, very low. able It was like it was so volume depleted. Now of course, part of that could be the cannabis, but we were literally like pouring in liters of fluid. And this was a very healthy young man otherwise. But I ended up after the surgery and it was like a herni repair, laparoscopic herni repair or something like that, a pretty straightward forward surgery. And I went up to the mom and I said, you know, I think your son could have I think that might explain his severe anxiety. he was having gastrointestinal problems, didn't feel well most of the time, terrible fatigue. And I said, I think he might have a medical problem. L everyone was blaming this kid for not feeling well. And I said, I think there could be something else going on here because that was really unusual. Usually you give a bllus of fluid and the blood pressure comes up and the CO two comes up and they're okay, But this kid required a ton of fluid. It was shocking I bet. I bet, well probably also reassuring maybe for his mom to understand that there might be something more at play here. And for benefits of listeners that are not familiarized with dysautomia or POT, can we at least speak from the perspective of what is it? What does it represent? Because I saw a lot of severe pOTs in cardiology, you they'd positive tilt table tests and they would end up on powerful drugs like mididrine, and then we would politely scoot them over to dysautonomia focused providers because we felt like we had kind of extinguished our options in being able to manage and mitigate their symptoms, know, feeling they're going to pass out, you, really low blood pressure, hypotension Yes. So PotTs, postural orthostatic tachycardia syndrome is one of the forms of dysautonomia or dysfunction of the autonomic nervous system. and the autonomic nervous system controls all the things we don't think about. So our blood pressure, our heart rate, our breathing, our temperature regulation, the size of our pupils, our digestion, like all these things are controlled by the autonomic nervous system And so when it's dysfunctional we could have crazy changes in our heart rate, we can have difficulty regulating our blood pressure. We can have difficulty in so many different systems of the body because literally the autonomic nervous system controls all these different things that happen in the body. And so if somebody has that kind of condition, it means that their heart rate goes up when they stand up and they don't tolerate upright posture very well So the heart rate goes up to compensate for the fact that there's been blood pooling in their legs or their blood vessels are very compliant, they're more stretchy. And so they're not getting enough blood flow. so the heart rate increases Unfortunately, that leads a lot of people to think that it's a heart rate problem and it's really not a heart rate problem It's just the heart rate that defines how we diagnose the condition, at least in part, because we are looking for a heart rate increase of more than thirty beats per minute in an adult and more than forty beats per minute in a child or teenager So It's really frustrating because these are really neurologic conditions, but a lot of people think that they're cardiac conditions D. Hence why the cardiology team never ever wanted to do more than just you know, stabilize someone and then scoot them off to someone that's specialized in that area. Now maybe we should both stabilizing quotes though, because right Stably li is and good. Healthy enough to leave the office or at the hospital. Certainly not. The quality of life metrics had not been met for that patient for sure And what's interesting is and again, things I did not know is that In this constellation of complex medical problems, we also have this hypermobility piece. And I think that those of us that understand what EDS is, airlos downlads, I saw like the super severe manifestations. I used to affectionately refer to them as the gumbie patients. I mean, they were extremely hypermobile, but it's absolutely a spectrum because sometimes that hypermobility is not as pronounced and can be much more subtle. And so when you're approaching conversations with patients or your community How do you help them understand that there are signs that they can be hypermobile that aren't just joint flexibility related? And even the joint flexibility piece is complicated because there are multiple different types of hypermobility, and one of those is historical joint hypermobility. So as you pointed out, I have a diagnosis of hypermobile EDS I'm really not hyper moobile anymore, though I'm sixty one years old. I was extremely hyper moobile when I was a ballet dancer Now at sixty one, I've had a lot of surgeries, I've had a lot of injuries, so I don't have anywhere near the hypermobility that I had before. In fact, I'm probably more stiff then a lot of people my age. So we need to take that into consideration when we are evaluating people. So there's a tool called the five point questestionnaire that assesses joint hypermobility from a historical lens So we ask, can you now or could you ever touch your thumb to your forearm? Can you now or could you ever put your palms flat on the floor without bending your knees? When you were a child or teenager, did you dislocate your shoulder or kneecap on more than one occasion When you're a childhood teenager, could you do the splits or party tricks? And then the last question, do you consider yourself double jointed And if you answer yes to two or more of those questions, it's very, very likely that you have generalized joint hypermobility So that means that you have a number of joints that have greater than expected range of motion or you had So that's just one component though of a hypermobile EDS diagnosis And it's also important to note that there can be people who can be super, super flexible. they could be super gumby But they might not even have EDS at all because they're super hyper flexible for some other reason. and they don't have an actual connective tissue disorder. So for the Aillers Danlos syndromes, which are one of the most common causes of joint hy probability and one of the most common types of connective tissue disorder, hereditary connective tissue disorder There are actually fourteen different subtypes And the tricky part is that all of the subtypes except for, of course, as it would be. the most common type, the hyper moobile type, all the rest have genes associated with them. So we can refer to those as the genetically identified types or the monogenic types, but those we know this gene or these couple of genes cause that clinical picture But for the hypermobile type, which accounts for eighty to ninety percent of cases or maybe even more, we don't know the gene or genees responsible Something I hear constantly from women in our community and something I understand personally is this Nothing about your effort has changed and yet our bodies are responding differently Your midsection feels different. Y blood sugar is much less stable and your cravings may have shifted And let's be honest, your energy probably isn't what it used to be As a nurse practitioner with over twenty five years of experience, I want to be completely transparent with you about why Estrogen is one of the body's master regulators of metabolic health The influences how we store fat, how our tissues respond to blood sugar changes, and how efficiently our metabolism functions at the cellular level As estrogen shifts during perimenopause and menopause, the same lifestyle choices, diet, exercise, sleep genuinely do not produce the same results. This isn't a failure of effort. It's a precise biological transition, and most solutions don't address the root causes That's why I want to tell you about mit acute hormonal metabolic control It's formulated with S equL, which is a highly bioavailable phytoestrogen that supports healthy estrogen signaling We know that eighty percent of women cannot produce S equal naturally because it requires specific gut bacteria most of us just do not have. This formula bypasses this entirely. It also includes a particular bacterial strain B breve, which works via the gut hormone access to support estrogen pathways and help ease occasional bloating and chromium to support healthy blood sugar balance. This is a targeted cellular support for the transition we are all in and's designed specifically for women in perimenopausea menopause and built around what actually is effective Go to wWW dot mitoQ dot com slash Cynthia and get ten percent off your first order Again, that's mIT oQ dot com slash Cynthia to get ten percent off your first order It's absolutely fascinating. becausecause I'm thinking, as I'm talking to you, I have a family member who danced her entire life. She's had multiple joints replaced was always incredibly mobile. But I would imagine that a lot of these hyper mobile sp attract people who are particularly adept at that. And I think that in a lot of different levels I was watching, there's someone on I wish I could remember his name. He's on Instagram, but he's a pineologist and he talks about the spectrum of activity and how certain sports, you know, just the mechanics. he's very mechanically oriented, but he talks about the mechan Be a ballet dancer or a water polo, being able to jut up out of the water, But he talks a lot about that flexibility piece and how some of it is probably genetically mediated, some of it's probably someone who hass just been conscientious and trained their bodies to be able to move in time and space Do you feel like women are disproportionately affected by some of these connective tissue disorders or even hypermobility more so than men? Oh mostost definitely. So in most studies, you'll see you know ninety percent of the patients that are included are usually female, it's much more you know female represented. however We know that males are affected also. and we think that the reason why it looks like that because these are probably genetically passed down conditions and they probably are equal in males and females, but the hormone piece is dramatically different. So males have testosterone, which helps them build muscle mass And so they're going to have great benefit from that. So until puberty, we see about the same rates in males and females, but then once they hit puberty, females tend to get more lax because of the hormones, the cycling hormones and things like that. and males tend to get tighter. They tend to get more muscle mass and their joints tend to get Lesson flexible and females tend to get more flexible. So we think that there's a variety of reasons that being one of them. Also, of course, our bodies are built differently so we can have pregnancy and things like that, we know that autoimmune conditions are much more common in females than in males So that probably also makes a difference because we have other contributors to pain and you fatigue and other problems in our bodies. And also mass cell activation syndrome also appears to occur much more in females than in males. So it's probably all of those factors plus the fact that females tend to seek care, more frequently than males. so it's probably a whole host of reasons why we see this so much more commonly in females No, it makes a great deal of Spence. And even bringing up the MCAS and the histamine piece for a lot of women that are navigating this decline in hormones where in perimenopause, women's estrogen levels can be twenty percent to thirty percent higher. and all of a sudden they're getting this constellation of symptoms. I would imagine and certainly based on my own clinical experience, it seems like if someone wasn't diagnosed and te twenties or thirties, their forties ish is where a lot of women are starting to announce themselves, prevail upon the fact that there's something unique going on with their physiology as they're trying to traverse this decline in hormones, especially in perimenopause So for the benefit of listeners, Especially because I think the term double jointed or flexible, I think a lot of people just think that's what hypermobility actually represents. so what is actually happening at a tissue level. And this is what I think is really interesting And it can help explain why know some people, I always say the unexplainable. They'll say I've always had a propensity to be able to do X, Y or Z without fully understanding. So when we're talking about hypermobility, what is happening at that tissue level specifically So we know that the Aylers Danlow syndromes are conditions where we have genetic alterations in things that code for the extracellular matrix and connective tissue, collagen and other components that are basically like the glue that's holding our body together know with hypermobile EDS because we don't know the gene or genes, but we know the phenotype. So when we see this clinical picture, we know it when we see it We see people that have joint hypermobility, they have changes in their skin. so they have stretchy skin, they get abnormal scarring in their skin. their skin is more fragile. and their tissues are also more fragile. So they might have pelvic organ prolapse, they have recurrent ventral hernias. they might have malrravalve prolapse. So those are the three like core features of the hypermobile type of EDS in particular But we don't know at a like cellular level what's happening because we're too many people being lumped together right now. so until we really are able to I think teese that apart We won't really know, but it's basically problems in your connective tissue or the tissues that hold everything together. So that's why you end up with gastrointestinal problems because things are very stretchy. So you can end up with you delayed gastric transit You can get overgrowth of fungus in the intestines. You can get constipation because the bowels are getting distended and they have difficulty evacuating their bowels. The pelvic floor might be dysfunctional. so they have problems with intercourse and with evacuating their bowels related to that or with their bladder. The bladder is lined with masked cells and is also made up of connective tissues. so you have bladder problems And we see a lot of fatigue. That's very, very common. We see problems in every single part of the body. We see a lot of nervous system problems whether they meet the criteria for POT or not. and we see a lot of nerve problems. So we can see like compression of nerves withreats like outlet syndrome. We can see venous compression syndromes like MLs or median arquate ligament syndrome SMAS, which is suuperior mesenteric artery syndrome, Nck crracker syndrome, which involves the renal veins. Also, we can see Mtherner syndrome, which is compression of the left iliac vein It's fascinating. And so I think for a lot of people, understanding that there are There's a lot of overlap, but it doesn't mean that if if you've been told that you have pOs, that it means you're going to necessarily be hypermobile. I think for many people, they're kind of assuming that everything comes together, but I think it really takes an astute clinician like yourself to help tease out exactly what is driving a lot of the symptoms. clust this is what I find really interesting. So as I'm saying, like things can occur by themselves, they can also occur together. But when we're looking at EDS pots and MCAs How often or how frequently are you seeing this constellation of this trio together when you're working directly with patients or even interviewing people on your own podcast? Yeah, they do occur very, very commonly together, especially when you consider the whole spectrum. because you some people, if they go to a cardiologist and they get evaluated for POT, But the heart rate goes up by twenty six beats per minute thirty They might not get a diagnosis of POT, but clearly they're on the spectrum of dysautonomia. So when we consider the full spectrum of mass cell activation syndrome and connective tissue disorders and dysautonomia, it's really, really common. although like you said, not everybody has all of those things. There was a study that came out fairly recently that looked at people with POTS and hypermobile EDS, and that population of people had a thirty five Fold higher rate of having mass cell activation syndrome than people who did not have those conditions. So you know when we're looking at studies, we'll see like, this is increased by ten percent. That's increased by twenty five percent. We're talking thirty five fold. So it's huge Yeah. And I think, know for a lot of people, it takes such a long time to get that diagnosis. And I even reflect back, there was a lovely woman when I was in graduate school years ago, and she knew she had pots and she knew what she had to do to manage her symptoms. She was liberal with her salt int takeake. And I think she was a dancer. She was absolutely lovely. But I think back to what little we knew twenty plus years ago, I feel like things have really, I think there's greater awareness. I think social media certainly helps I don't know if that's been your you know, your clinical experience that you feel like social media is both a blessing and a curse. It allows us get information out there. hopefully good information. but I think for a lot of people it allows them to find the words to articulate what they're experiencing Now when you're working with patients that have multi system symptoms. So we're talking about unexplained symptoms that seem like they're a grab bag of, you know, fatigue, brain fog, gut issues, pain What is your process for thinking about whether hypermobility might be contributing to the root cause And what are some of the things that you think are important? If there are listeners who are experiencing these kinds of symptoms without a full explanation What's the best way for them to find a provider or a prescriber, and I always say medically licensed individual that's gonna to be able to help them navigate. I have to be very clear about that, helpp them navigate next steps. So a couple things that I always recommend people do You know, now we have so many great AI tools and those tools can be used to help you organize your information So I strongly encourage people to do that because you can then have like, a short list of symptoms, a medium list of symptoms and a long list of symptoms or you can you know, take your list of symptoms and put it into an AI platform and you can say organize this by system So like you said, brain fog and fatigue would likely go together, you know, if you have problems with you know old intolerance, heat intolerance. thoseose might go in that same like constitutional type category. If you have heartburn, constipation, diarrhea, food intolerances, like those will go in a GI category. Likewise, if you have flushing, hives, eczema, other skin problems, those would go in a skin category. So I recommend that people use those tools to organize all of their information. so like a timeline is really helpful and keep it succinct have it like, you know, by early childhood, childhood, middle school, you know elementary comes before middle school, but you know what I'm saying? Like H it organized and have bullet points. I like bullet points because then I can like glance at it really quickly And you can prepare a few of these documents that will make life so much easier for the clinician And they will thank you for it. I love it when people do this and if they have their list of like things that they've tried in the past and either what percent success they had or if they failed. But that kind of information is really, really valuable for somebody like me who's really trying to solve a mystery and sometimes it's not that mysterious, but a lot of times it is and really trying to figure out like what are the most levers that we can pull to get the most bang for the buck because there's usually a lot of things that we could do, but I always want to do the least intervention for the most impact. So I'm looking for the smallest things, the lowest hanging fruit. Yeah I used to always say I always loved my engineers because they would come in with graphs. graphs and very organized. And they would say, well, how do you know I'm an engineer? And I'm like, Well, I'm mared to one, but you're very organized and orderly. But yes, we love organization that allows us to kind of determine what exactly it is that we're dealing with. How does pain intersect with hypermobility? I think this is a common kind of misconception or Again, I go back to, I'm going to humbly say this over and over again. I think we were never trained about some of these hyper moobile pieces, and so it might not occur to us as clinicians that pain may be a component of that. M Yeah. anyybody presenting with a persistent pain concern should be evaluated for possible joint hyper moobility. And know if it's a shoulder problem and they have hyper moobility in their shoulder, it doesn't mean that they have to have generalized joint hyper moobility in order for the hyper moobility to be impacting their condition. So it's very important to assess for these things You know, when it comes to pain, it's such it's an experience, right? It's what you say it is. Oly the person who has the pain knowns what it's like And when I was having terrible, terrible pain back in two thousand nine, twenty ten all the way through a Oh let' see I had surgery. I had major bone grafting surgery on my wrist in January of twenty sixteen. I got CRPS after that So probably through about twenty seventeen when I opened my clinic and even later, like I had daily pain. I had daily pain. And when you're in pain for so long All of those signals coming into your nervous system sensitizes your nervous system And we know now too that mas cells are very involved in that. So unfortunately, people have Reasons to be in pain because they have joint instability, they have joint subluxations, dislocations, they're getting micro trarauma all the time. So they have tendonopathies, bursitis, like you all these different joint problems that are just part of the picture. And then if they have mask cells that are also contributing, that makes their nervous system more sensitized to pain So it's the pain processing part of the nervous system that also becomes dysfunctional. So you can end up with pain for a whole lot of different reasons. We know that there's different pain types and a person with EDS can have all of those pain types and they can have pain in multiple different parts of the body. But the good news is there are things that we can do about that, even if you've been in pain for a long time Yeah, I think that's really important. And I think that speaks to that sympathetic overdrive in the context of. hypermobility because I think I know. If you perceive that you are going to have pain, it creates anxiety, it keeps hypervigilance, it creates more sensitivities that are all real. It's whatever the patient is experiencing. But I would imagine that kind of sympathetic overdrive leads to more pain response, in and of itself Most definitely. and I did something weird to my foot a couple of days ago. I have no idea what I did, but And I was just telling you, I'm having a problem with my eyes. I feel like this is what happens. You get one problem and it exacerbates another problem, but then everything will kind of smooth out for a while and things will be better, but When you have one pain problem, it really causes the other things to be more painful. We often say pain begets pain And so if we can do anything, to alleviate pain in one part of the body, we can often make progress in other parts of the body, even though we didn't actually touch those parts of the body Yeah, I think that's certainly significant. There's something called kenusophobia, the fear of moveving find it or A lot of your patients, this becomes a concern. And I would imagine if someone easily dislocates a joint, or you know, I had a high school boyfriend who probably had EDS, but dislocated his shoulders so frequently that he ended up having to have surgery, which I'm sure I'm not sure how that worked long term, but in the context of hypermobility Yes, so kinesophobia means fear of movement. And I remember when I was writing my first article about EDS late twenty sixteen, early twenty seventeen, and I came across that word and I hadn't thought about the word before, and I was like, oh my gosh, that's what's happened to me. I was so afraid to move because I would. I would get subluxations and dislocations of my fingers and other parts of my body doing simple things, you know getting up off the sofa or just walking around. And so you do, you get fearful of moving. But what happens then is if you move less then your tissues start to weaken. and so then your joint hypermobility becomes more of a problem and you are putting more load on tissues that are not really ready for it. So we need to move. We need to strengthen our tissues. We need to gradually increase the load on our body because even if you have a connective tissue disorder Y tissues should at least to some extent pond to that increased load. I interviewed someone in my podcasts recently who has classical EDS and she is now bodybuilder and she coaches people in bodybuilding and she used to be very, very sick And she's doing incredibly well. And , it just goes to show that even if you have a genetically identified type of EDS You know not everybody can achieve that kind of success, of course. She's also young, which is helpful att least for some people, they can really develop that strength, which will protect your joints. that will help Your ligaments and your tendons, you know, not have to carry as much of the load because your muscles will help out Yeah, it makes so much sense Now I would imagine as an anesthesiologist, that peopleople that have EDS probably don't respond the same way to anesthesia. And I'm sure that was probably your experience. I know that you've also written about this publicly Do this also apply to like broad based connective tissue disorders overall So we know that people with hypermobile EDS do have more local anesthetic resistance. So this is, you know, you go to the dentist and they're injecting the local anesthetic into your gums or you're going to the dermatologist and they're going to remove a mole or something like that they're injecting anesthetic that's going to work locally. And so it could be Lyidocaine, buuivocanaine, whether it's being injected for a local procedure or like a spinal or an epidural Regardless of where you put it, local anesthetics, those kinds of medications are less effective in people with EDS. And we don't know fully the mechanism why, but there's lots of different theories and they all completely make sense but we know that they often need a larger dose of medication. they might need a longer onset time, they might need more frequent dosing. Often they get gaslit. they get told that they're crazy. Oh, you couldn't possibly feel that. Dru seeking. Drug seeking. ye. So MipPivocaine, which MEP IVI, CAIN E, is one of the more effective local anesthetics in this population of people And so it's important for people to be aware that there are differences in how people react to local anesthetics When I was working in the operating room, I had a patient once who was coming for a C section And I was reviewing her notes from her previous C sections, and she had had spinals because we always like to do a spinal rather than putting someone to sleep because it's risky, doing a general anesthetic. So you try to avoid that if you can and H spinals didn't work And I remember thinking, well, that's so weird because usually when you do a spinal, you get the fluid back. And spinals work ninety nine point nine, nine nine percent of the time, But she had had several spinals that didn't work Now, I don't know now looking back, did they not wait long enough or I don't know what the situation was, but at the time, I remember thinking that's so unusual because prior to that, I always thought, well local anesthetics always work You know, because that's what you're taught that they always work and Of course, they work most all of the time and eventually most people do get numb We just need to keep an open mind to the fact that these people are going to respond differently to local anesthetics Well, it almost it also makes me kind of sad. I had an epidural and a spinal with my second I can't fathom trying to contemplate a surgical procedure and having your anesthesia be ineffective or not work at all. How frightening that would just add another layer of complexity to an otherwise stressful situation Now I'm curious. I would imagine that, you know, peri menopause, menopause connective tissue disorders How does estrogen impact connective tissue? I know the answer to that. And what happens to the tissue in estrogen declines in that perimenopause to menopause transition? How does that magnify the effects in patients Right. so what I see in my patients and clients is perimenopause tends to be really rough. That tends to be a lot worse than once you've actually gone through menopause and you're back to kind of a more steady state whether you're taking he. Yes. When you're back to stable hormones, whether you're on hormone replacement or not So yes, estrogen, although it can make the connective tissue know also more stretchy, it helps make it more organized. and it is our friend. And when we don't have it anymore, we have it in much, much less amounts, can be really problematic. We can get injured even more easily and we can have more pain and you know, a lot of problems. So yes, estrogen can be The loss of estrogen can be really tricky Yeah, and it's interesting. I was talking to a young woman the other day who when I say young, she was in her late thirties and I said, Pimenopause is the storm before the calm. So I think for many, many women, they'll be the first person to say that perimenopause, the hormonal fluctuations just magnify symptomatology. And then as they make that transition into menopause, they feel a whole lot better Have you found any improvement or stabilization? in your patients utilizing HRT as a mechanism for supporting connective tissue overall? I definitely see people improve with HRT. I mean, we have to be careful, of course, and prescribe it very appropriately and make sure that we're really evaluating a person's complete risk profile, but I definitely find a lot of people really benefiting from HRT Yeah, it's interesting because I feel like, u The one thing I notice on intake forms overall, it's usually the sleep is the number one thing, that the sleep quality has improved substantially. And I mean, you and I were certainly in the medical community at the time when the womomen's Health Initiative came out and kind of things changed rapidly and now the pendulum is swinging back the other way In terms of looking at pererry menopause as an inflection point This is when I myself started having symptoms of like hives and flushing and a lot of not necessarily vasomotor symptoms, but I'd never had hives before. and I was getting hives You know, depending on where I was in my cycle, what cycle I was in, how does MCAS and perimenopause almost look identical in terms of symptoms And how do you help distinguish them Right. it is definitely a condition where you have a lot of overlap there because mask cells which are part of the immune system. they have receptors on their surface for hormones So they respond in particular to fluctuating levels of hormones. So while hormones can activate masked cells, they do better with a more steady state. So that's where having something like HRT can be beneficial because they tend to be just a more consistent level of hormones. Whereas in paramenopause where things are all over the place, people can really experience a lot of problems with their mass cells and like what you're describing, even if they've never had those kind of problems before Yeah, it's interesting. I always feel like in many ways, perimenopause is this great litmus test. It's like, are you taking care of yourself? Are you aware of the symptoms you're experiencing? Because if you're not, your body's going to remind you that things are kind of going haywire Now I think it goes without saying that medical gaslighting is part of I don't want to say it's unique to patients with complex medical problems, but I would imagine it gets magnified. You've talked publicly about the cultural and clinical gaslighting faced by women with complex health conditions Can you help listeners understand when you're talking about this medical gaslighting What does that mean from your perspective as a physician? So I experienence this myself. You know, you go into the doctor and you are miserable with whatever symptoms that you're dealing with and you're hoping to get help and they look at you and they say, there's nothing wrong with you. And I had this happen to me multiple times. I had doctors Female doctors included, put their hand on my knee and say, Well, if the imaging comes back the same, we're going to have to accept the fact that this is psychological Oh wow. And this is when I even had the Tarlov cyst on my imaging, which turned out to be causing a lot of the problems that I was having So, you know, there's in this particular case There was this you know misconception that Tarlov cysts are always incident incidental findings. And my doctor was just convinced that it was not a part of the problem. And finally I went to a doctor who said, you know, maybe that marble thing that we're seeing on your MRI, maybe that is the problem. And it turned out it was. I had surgery and I got world's better after that So the gaslighting is very real. The medical trauma is very real. And it's like what we talk about with you teachers and ministers and things like that. You know, we're in a position of power and authority. And so if we don't listen to somebody and if we don't say, I believe you either with our words or with our body language They are going to feel like, you know, they're not believed and they might start to gaslight themselves and It's really devastating for people. I mean, this happened to me where I thought Well, my doctor said there's nothing wrong with me. I must be weak, you know, I must be imagining it and you know, it was very hard. I went through a period that was very difficult psychologically because I kept telling my doctors something is wrong. And they kept saying No, you're fine, you're fine. you know, you just need to eat more because I pretty underweight for a while when I was you so depressed and anxious and really struggling with all of this. And of course, everyone else is looking at Everyone else is looking at me and saying Wow, you must be you know, running a lot or doing something because you look so great and it was Ironic because I was super underweight because I was so miserable in not eating. So it's funny how we often judge people on their appearance and we could be completely wrong Absolutely. And how do we differentiate and I'm saying this as consumers, how do we differentiate between A medical professional who is dismissive versus someone who just generally hasn't been trained to recognize these particular conditions or symptoms Yeah, I love that question because I do also see sometimes on social media, I'll see people say My doctor didn't even know how to pronounce Eler Dano' syndres. And I'm like, whoa, wait a second You want people to be humble and you want people to say that they don't know, but then you're also judging them when they said that they didn't know. So I think the big question is, is the person empathetic Do they express that they believe you or in some way Are they showing that they either want to learn and or want to help you. Are they trying to connect you with resources, Are they trying to do with other referrals. or are they just dismissing you? Because if you feel dismissed, you probably are. I do have to say that I've had some people tell me about their PCP experience and they'll say, well, they didn't do this and they didn't do this. And I'm like, I don't know. from what I'm hearing and from what I've seen in the notes, like this person actually might be okay. like give them a chance. like Sometimes you have to kind of lower your expectations and realize that especially if you're using your insurance. Not everything can be accomplished in one visit. So make sure that you say, I still had some questions. There were still some things I was hoping to cover I'm going to plan another appointment in the next couple of weeks if that's okay. and hopefully you can get back in because I know that's another thing that people really struggle with. So it's hard because you might encounter Really excellent clinician, they might be really empathetic, they might be really curious. they might really want to help But then you might have difficulty getting back in because they're so busy So it is a very challenging time that we're living in No, it absolutely is. I think medicine has changed a lot. and I would say in the last ten years, I feel like things have really accelerated because I was part of that, you know, traditional medical model for sixteen years or twenty years, if you count when I was a trauma nurse, but I didn't have to deal with billing or how many patients I saw per hour But I remember trying to explain to patients You know, there's nothing worse. I think everyone that goes into medicine or most of us that go into medicine, we really want to help people. We care about our patients. We don't want to be rushed. We don't want to feel like someone's banging on the door as soon as we sit down and really connect with someone. But unfortunately, the traditional medical model is so broken at this point that a lot of people are moving away from dealing with insurance. and that can be a source of frustration and the people that are left that are you know, frontlining it in many ways. they're seeing, you know, forty, fifty patients a day. and you know, they have used called the handle on the door question because you would be right literally walking out and then they would ask you the question that you literally could not stop you had to stop, turn around and have the conversation. And I think the way that the medical model is set up right now Everyone is displeased. probably everyone but the insurers. R compleompletely pleased because they like having a sick care model 's pivot and talk about how nervous system regulation actually intersects with treatment. I think this is so important. and I've had two or three podcast guests over the past couple weeks that have really emphasized autonomic work, vagal tone, vagal training. How does this work in the context of hypermobility with your patients I'm a huge fan of vagal training, nervous system retraining, brain retraining, you know We have to address these things in a multidimensional way. So I have an acronym that I use men's PMMS. I don't know if you've heard me talk about it, but it sounds for movement, education, nutrition, sleep, psychosocial modalities, medications and supplements And so while we are working on medications and nutrition and educating the person about these conditions and maybe compression, and like you said, hydration and sodium and all these other things if we can work on some of these Vegas stimulators. So there's devices that you can buy that you can wear on your wrist. There's tenens units that you can use that you can actually put like on your ear. There's things that are free that you can do humming, singing gargling, you know, there's water exposure, there's all these things that we can do that can be helpful, Things like meditation, mindfulness practices, all of those things come at a very high benefit to risk ratio. So any of those things that a person can do are really, really beneficial, they can be very hard to do. I remember when I was a patient at the Mayo Clinic and I went to a meditation session and I was like, Every else is like falling asleep and I couldn't even like, I couldn't even like stop my monkey mind a second And what I didn't realize at that time was that meant I really, really needed to do it. I was like, I can't meditate. I'm terrible at this, but I really, really needed to calm my brain down and calm my nervous system down. And a lot of us do just live on sympathetic overdrive and we don't realize how extreme it is. And you know it's just it's important to check all the boxes and to try as many of these things as possible because everyone's going to respond a little bit differently, and we don't want to leave stones unturned that might actually be beneficial Yeah. And I think for so many people, it's reassuring to know that Vagal training can be part of that, whether it's humming, singing, gargling so, so important. You know, you mentioned movement And you know, we've already talked about how there's this fear of movement. How do you approach hypermobility and movement? Our group fitness classes, is one of the questions I got. Our group fitness class is totally out for these patients. Is it safe? Well, again, we're not giving medical advice, but So I can answer the first part very easily. Our group fitness class is safe. So I would say yes But Yes, but you have to pay attention to how your body feels in the moment and knowing that you might not feel as much as you're going to feel later So modify, modify, modify, do not be afraid to do things differently if it feels better for your body to do it in a different way. So I do group fitness classes myself and I've been going lately to group personal training. I modify a lot of things. They're doing a lot of things on their wrists. I can't do that because of' my bografting. my wrist doesn't go that way anymore. So I am constantly modifying things. So if you are interested in taking a group class, and if you don't feel like you can modify or you don't feel like you know how to, then maybe work with somebody one on one first, like my physical therapist will often you know give me exercises to do and different things to be working on. so I know I know how to modify. I know it's a good exercise to substitute for something else, but a lot of people might not know that. So I think that finding somebody who you can work with one on one might be a good either compliment to group fitness or you can do that in parallel and you can tell that person, okay, they were doing this exercise and that doesn't feel good on my body. What can I do instead And that could be really helpful Yes, movement is so, so essential because otherwise our bodies are going to get weaker and weaker. So sarcopenia is loss of muscle mass and that happens with age anyway. So especially when we hit, you know pimenopause, menopause, and older, We are going to lose muscle if we don't actively work to keep it. And that means actually really working quite hard at it. And that includes nutrition, of course, as well So finding those sweet spots of activity can be really difficult. So In my opinion, if we stay always in like our green safe zone That's fine, but for me personally, I have to go a little bit into my yellow zone in order to get my muscles stronger. So about a year ago I started going to this group personal training class And at first, I was just using arm weight. I wasn't using any weights at all. But over the course of the year I am now using actual weight, like decent amount of weight actually. And I look around the room and I think, okay, when I started like They were using this much weight and I was using just my arms. and now I'm using weights And they're using weights and a lot of people are using heavier weights than me, but nobody cares. Everyone is focusing on their own So yeah, it's really, really essential to try to strengthen our muscles, do some kind of cardio, even if that means You know, literally one minute or two minutes on a treadmill at one mile an hour or laying in bed and you know moving our legs to just very slowly start to increase what we're doing. So start low, go slow, but you really want to be trying to increase that amount of movement that you're doing Absolutely. And how does nutrition play a role? I think everyone's gotten the memo on protein. Like we know we need more protein. No fiber' important but are there specific foods they think are beneficial for collagen, for mass cell stabilization or even regulating the nervous system because I think nutrition is important. I think it is this fundamental element to care and certainly for women in midlife, we have to eat differently than we did when we were eighteen. Yes, yes, we definitely do. And the protein thing is so funny because it's gone so it's gone so overboard. It's insane. So I have a family member who works for a very large company that makes nutritional products and unfortunately, they're being They're being really pressured to change some of their formulations when they really People believe that it's in people's best interest, but they're doing it because otherwise they're losing market share. So the whole protein conversation is really complicated and tricky and it's important to pay attention to the quality of your protein, the source of your protein, and the source of all of your macronutrients, right? I mean, we need fat. Our nervous system is made up of fat. so we need healthy fats as well And we do need carbohydrates. I know some people do better on like a keto diet. I have patients that are doing carnivore diets. I actually had a patient the other day who was She was diagnosed with scurvy This year, twenty twenty six She's on a carnivore diet. ive tissue dying for vitamin C Her connective tissue is suffering because of a lack of vitamin C. So the challenge is a lot of people with EDS and mass cell problems, they start to eliminate foods from their diet because they're like, oh, this causes me this problem, this causes me this other problem. But then what happens is as we eliminate those foods, we can get deficient in certain macro and micronutrients and that can make problems worse. Things like zinc and copper are extremely important for our connective tissue. You know Vitamin C that I already mentioned, B vitamins are extremely important. So when people go gluten free, they often might not have enough B vitamins which are important for energy and for you know head pain and a whole bunch of other things. So nerve function And there's a lot of people that are like B twelve deficient that are experiencing neurologic problems from B twelve deficiency, and that gets missed quite often. So food is very important. And in general, if we can keep our foods as diverse as possible, we try to not be over really restrictive because that can cause a lot of problems Try to engage in some like relaxation exercise before you eat because I think the other thing that happens when you've had Bad experiences with food. then you tend to get more nervous and of course, that shuts down your gut. So you're more likely to have problems. So I think if possible, some of those vgas exercises that we talked about. do those before you eat. you know, sit down and just, you know try to relax, take some deep breaths and really try to, if you can, do a nice presentation and really enjoy your food as much as you can to make it a positive experience becausecause I think it ends up being a negative experience for a lot of people Yeah, I think you bring up so many good points. And what you're really speaking to is nutrient diversity, being conscientious. You know, it's interesting. I just did some microbiome testing with Tiny Health. I don't have any affiliation with them. I'm just saying the company because inevitably, I'll be asked And when they were reviewing my results of me, they said, do you eat a lot of protein? And they can actually tell from the microbiome results that and I said, it's not that it's excessive. I eat one hundred grams a day. That's like my threshold for me. That's what works well for me. And they were laughing They're like, well, sometimes we get people that eat one hundred fifty, two hundred grams, two hundred fifty grams. And so I said, no, no, I'm very much into, you know brightly pigmented fruits and vegetables. I tolerate a good amount of plant based fats. And so it was interesting to have this conversation with the reality of Ustanding that at a microbiome level, you can actually see that. What I think is interesting when we talk about carnivore diets. So carnivore diet really is an elimination diet. I think they're designed to be therapeutic in the short term. I think long term, you're starving off beneficial bacteria. And it was interesting. I interviewed a microbiome expert and she was saying, in the absence of fiber, Y body will to fer will try to ferment protein, which as you can imagine would be disastrous because it putrefies. It's not designed to be fermented. And so I think that irrespective of whatever your nutritional paradigm that you embrace, We're not designed to cut out entire food groups. I think that that becomes problematic. And I'm chuckling to myself as you're mentioning some of these nutrient deficiencies that people can develop. And I've been gluten free for a long time. the irony is that I always have to supplement with B vitamins. And you know it's something that my integrative doc and I talk about now I'm on liposomal vitamin C so absorb it better. and And he's like, you eat plenty of vitamin C rich foods. He's like rightight now your microbiome is just it's just not absorbing or the small intestines is not absorbing enough of these nutrients. So thank you for bringing that up. It's to kind of round out the conversation today. I would love to have you talk about Validation and hope. if there's someone that's listening that is, you know, feeling like a medical mystery, I mean sometimes that's the terminology that patients will use you know, they have not yet gotten a big diagnosis or maybe they've been told they have pOTs. or dysautomia, or they've got a little bit of EDS or whatever it is that's going on for them. in terms of validation and hope do you wish every primary care provider, internist, OBGYN actually knew about hypermobility? and for the listener that's maybe not yet diagnosed How can they find a practitioner or a provider that's going to be able to help them get answers? Are there coated resources for providers in the United States? Obviously, you're an excellent resource for this. Is there any one particular location where people can look for trained providers that are more familiarized with these diagnoses So the Eylerss Danlist Society does have a directory, but they don't vet that list. So all somebody has to do is submit their name and their name's going to show up on the list. So it's really important for people to know Dysautonomia supportupport Network keeps a list as well, but their list is developed by patients submitting names, not clinicians submitting their own name And I don't know the ins and outs of how it works because I'm not involved in that organization. but it's my understanding that your name can get added and your name can get taken off if somebody you know, says, I don't think that person should be on this list. So their list is definitely something that I recommend quite frequently. I also offer coaching sessions, one on one coaching sessions for people who can't become a patient and I have a very long waiting list to become a patient, know unfortunately because it's They're adding faster than I can get them in at this point, but I do a lot of coaching and I love that because they can do it from anywhere in the world. and that's a place where I very frequently will share names with people. I don't publish my a secret list anywhere because I have a lot of information on there that I don't want publicized, but I have lots of names of specialists of various different sorts in different parts of the country or different parts of the world actually. So it can be very tricky to find somebody, but I try to keep that list very to date based on feedback that I'm getting from people. So it's a dynamic document for sure. that is in terms of like where we can find people What do I want clinicians to know? I want them to know that it is not hopeless and that actually, if you learn about these conditions you can actually be more effective in your practice. These are the patients that you feel like are not making progress So if you learn even just a little bit about EDS Pots and mas cell activation syndrome you will be able to help more people. And as you said, Cynthia, that is exactly why we all went into this in the first place was to help people So if you spend even just a little bit of time, learearning some of the basics you will be able to have better outcomes. you will be able to have some people who can really make significant improvements. And to me, that's the most exciting thing about this space and it's why I'm so passionate about my podcast Bendy Bodies becausecause there are so many things that people can do So this narrative of, you know,, well, why bother with the diagnosis becausecause there's no cure Well, what do we have a cure for? We have cures for so few things in medicine, but we diagnose them anyway. You know, if you think about it diabetes, hypertension, like these are conditions that you just manage and usually lifelong. So why would we treat this any differently? It's something that needs to be managed. And in many cases, people have gotten out of wheelchairs. They've resumed eating tons of foods, They've gone back to dance, they've gotten off of medical leaves. I've just seen incredible stories over the past almost decade of people who have made incredible progress I wish I could say everybody was like that. Unfortunately, I'd be lying if I said that, but There are many, many cases of people who have really just improved dramatically. Well, thank you so much for the work that you do. I really enjoyed preparing for this podcast. and obviously, I could continue talking to you for hours. So we'll have to bring you back for part two Again, such a requested guest. I'm so glad we were able to bring this to Frion. I think there's a lot of women in my community that are not getting the answers that they feel like they do need and deserve. And so hopefully this is a step in the right direction. lotots of great resources that you provide, you know, within your practice, on your podcast and in your coaching community. So thank you again Thank you so much for having me. You're absolutely right. There's so many women out there who are suffering and they don't need to be suffering. They don't need to be suffering to the degree that they're suffering. They could at least be having a somewhat improved quality of life. So I really appreciate you helping to spread the word Absolutely. If you love this podcast episode, please leave a rating in review, subscribe and tell a friend