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If your body is super reactive… even the tiniest change can set off awful symptoms – then you should consider the spectrum of mast cell activation diseases.
What most people find enjoyable, like healthy foods, exercise, or even sunlight, can make some feel horrible. Often these symptoms are beyond just “histamine intolerance symptoms.”
And while others around you might think you’re just “being dramatic” or “making a mountain out of a molehill,” it’s clear to you that your body is extremely more reactive than others.
It can be hard to get a clear diagnosis and help if you are struggling with mast cell activation diseases – including those with hypermobility syndrome issues like Ehlers-Danlos.
If your life feels like you’re constantly navigating a minefield of unexpected symptoms to the smallest things, I’m joined by Michelle Shapiro, RD, to talk about what causes you to have a “highly sensitive body.”
Michelle Shapiro, RD is an Integrative/Functional Registered Dietitian in NYC who has helped over 1000+ clients reverse their anxiety, heal long-standing gut and immune issues, and approach their weight in a loving way. Michelle has a virtual private practice of 5 nutritionists where she and her team work one-on-one towards these goals. She is the host of the Quiet the Diet Podcast, where she helps listeners bridge the gap between body positivity and functional nutrition.
If you’ve been searching for answers about your own body’s unpredictable reactions or want to better understand these complex conditions, let’s dive in!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In This Episode:
- What does it mean to have a “highly sensitive body” problem?
- The role of mast cells as “guards” of your immune system
- Histamine intolerance symptoms (and why a histamine intolerance diet doesn’t help long-term)
- Histamine intolerance versus Mast Cell Activation Diseases
- The surprising link between MCAS, POTS, and hypermobility syndrome
- Why POTS isn’t a heart problem
- The long COVID–histamine intolerance connection
- Practical tips for managing severe histamine intolerance symptoms
Quotes
“If you are repeatedly feeling worse, you are literally getting worse. So if you have a histamine issue, it is not safe or healthy to go on these tremendous detoxes or protocols.”
“Mast cell activation syndrome is when your mast cells are constantly activating and releasing chemical messengers.”
Links
Find Michelle online | Instagram
Michelle’s podcast, Quiet the Diet
Michelle’s Highly Sensitive Body Hub Waitlist
Healthy Skin Show ep. 319: Mast Cell Activation Syndrome: What is MCAS + Why It's So Devastating
Healthy Skin Show ep. 166: Mold + Histamine Connection
379: If You’re Highly Sensitive (How Mast Cell Activation Diseases Make You Super Reactive) w/ Michelle Shapiro, RD {FULL TRANSCRIPT}
Jennifer Fugo, (00:15.836)
Michelle, I am so excited to have you here on the show. It's a long time planning, we've talked about this so many times, but I'm really glad that you're here.
Michelle Shapiro RD (00:23.662)
Two histamine queens coming to the table. I'm so excited to be here today. I'm so excited to sit down with you.
Jennifer Fugo, (00:29.882)
Awesome, well, I think the first thing we need to discuss, because you talk a lot about this group of people, kind of a phrase, I guess you coined, called highly sensitive bodies. And I think somebody on the other side of this might be like, I don't entirely know what that means. So what is a highly sensitive body, and what led you to be interested in working with these individuals?
Michelle Shapiro RD (00:57.644)
So I kind of define a person living in a highly sensitive body as a body that works in ways that we don't quite understand. And I almost think that a person living in a highly sensitive body would have an opposite reaction to something that someone else would have. So I'll give you an example. Someone could get an IV, let's call it, and then they would feel extremely sick after, when IVs are supposed to make you feel really, really good. Things that other people find really enjoyable, like going to the beach can create tremendous symptoms. Like laying out, exercise, something that's really healthy, even eating foods that are like tomatoes and citrus and vinegars, these healthy foods, bone broth, can make people in highly sensitive bodies feel quite sick. And so what I've kind of created is this cluster of symptoms or syndromes that kind of align together, and they all connect, and they create this kind of body that reacts to things in a predictable way. The reason I ever made this phrase in the first place, highly sensitive body, and I actually have to give credit to Olivia Amitrano, who's Organic Olivia, she's the one who said it during our podcast, and I was like, and that's now the name of my group program, thank you.
But really, I myself have lived in a highly sensitive body my whole life, I'm very prone to have strong reactions to supplements, weird reactions to things that I never quite understood. And I kind of started to, once I had COVID, which I believe that one of the kinds of syndromes that exists within this highly sensitive body is driven from COVID, and it's one of the cluster of symptoms and syndromes within the highly sensitive body group. My experience with long COVID was excruciating. I had COVID and then I had a mold exposure, and that turned into nightly insomnia, violent tremors, extreme digestive issues. I could not walk at some point, cause then I also am hypermobile, which we'll talk about, I'm sure, at some point in this interview as well, which is another feature of this highly sensitive body, and really was just living in a constant symptomatic state. And I could not find answers in my doctors’ offices. I went to the best naturopathic physicians in the world, the best functional medicine doctors, conventional doctors. And all of them would give me protocols, like a mold detox protocol, or a parasite protocol, or they would give me all of these protocols that really just made me worse and worse and worse until I started to understand and draw that picture together of what was really going on.
Jennifer Fugo, (03:32.241)
So let's talk a little bit about how to define some of these things. So for example, you mentioned long COVID. You had COVID, and then it can become what we might read in the newspaper or online as long COVID. How do you define long COVID? Because obviously, that's a part of this cluster of individuals.
Michelle Shapiro RD (03:52.94)
Yeah, so long COVID is generally defined as if you have symptoms longer than three months after COVID. And I saw this in a lot of my clients, they were coming into sessions, clients who had otherwise not had really strong symptoms, maybe were coming to me for weight loss or anxiety or gut issues, were coming to me with these extreme symptoms, extreme anxiety, extreme sleeplessness, digestive issues, fatigue. And fatigue is a huge feature of this.
So what's happening in long COVID, as we've come to understand, is that the virus happens, your body mounts an immune response from that. That's okay. There's maybe some damage from the virus, but the real issue with long COVID is that the body stays in that heightened immune state. The virus attaches very specifically to one type of receptor on our mast cells. And I'm sure we'll define mast cells. You do it every day, Jennifer, but we'll do it, and I'm sure you've done it a hundred times this podcast, but we can of course do it again. But that's what made COVID so spectacular, is that it attached to our mast cells directly. And our mast cells are really kind of like the guards on the watchtower of our bodies. So they're interpreting threat, they're preventing threat, and they are trying to proactively determine if a threat is coming. And what they do as a response is they, when something attaches to their outside, they release a bunch of chemical messengers from their inside and histamine is one of those messengers.
The problem with COVID is, because the virus itself attaches to the ACE2 receptor on mast cells, is that it left our mast cells so perpetually afraid of a threat that our immune system was turned on and repeatedly anticipating threats and staying in that activated state. And what the kind of deal with long COVID is, is that when your body is in that activated state for a really long time, it creates a lot of downstream effects because you don't really want those chemical messengers like histamine and other ones floating around in your bloodstream and demanding the body do different tasks. What the end result of that is, is really like what looks like those different syndromes, mast cell activation syndrome, POTS, and flares of hypermobility.
Jennifer Fugo, (06:04.21)
So if we go to one of the mast cell activation diseases, mast cell activation syndrome or MCAS, how would you define that?
Michelle Shapiro RD (06:11.884)
So if we think about those mast cells again, there's an outside perimeter, there's receptors on the outside. The nervous system can also trigger these mast cells as well, so they can receive messages from neurons. There are mast cells in basically every, the lining of our entire body, because they exist in connective tissue. And that word is going to come up again, I promise as well. But mast cells are in all of the hollow spaces in our body. And again, they are interpreting changes in our temperature, they're interpreting changes in our environment, changes from our food, and they are responding accordingly.
So mast cell activation syndrome is when your mast cells are constantly activating and releasing chemical messengers. It is defined as a syndrome because there's also MCAD, which is a disorder, disease, often from birth, and those mast cells are constantly over-activated. Mast cell activation syndrome can happen in response to different events, so it doesn't mean that it's necessarily lifelong, but it doesn't mean that it's not. And it's different for each and every person. And so those chemical messengers are constantly being released as mast cells are constantly being activated. And in a body that is not good at getting rid of those mediators or a body that's not good at detoxing, that again can cause a lot of problems. It's not only histamines, there's thousands of chemical messengers that can be released from those mast cells.
Jennifer Fugo, (07:39.112)
And in terms of POTS, because you mentioned that, and I don't know if listeners are gonna know what POTS specifically is, can you just quickly define that? So that way, moving forward, everybody's on the same page.
Michelle Shapiro RD (07:51.872)
Absolutely. POTS is postural orthostatic tachycardia syndrome, which literally means you change positions and your heart rate goes up. A fancy word for your heart rate goes up when you change positions. The reason that this happens is often because of some sort of nervous system dysfunction. So this is a really interesting thing. POTS, these heart rate changes, if someone had heart rate changes, Jennifer, they would go to a cardiologist, right? That's the first place you would think to go.
Jennifer Fugo, (08:17.638)
Yep.
Michelle Shapiro RD (08:19.426)
The issue with POTS is the reason that their heart’s pounding when they stand up is because of their nervous system. POTS is actually a form of dysautonomia. It is not a cardiac dysfunction. It is literally your brain telling your heart when to pump and how fast to pump. So the signal comes from the brain. So the treatment for POTS generally looks like, how do we get really good blood flow?
And I'll give you a kind of the feeling of what someone with POTS might experience. Let's say someone is showering, and they're in the shower and they feel like they get really dizzy and overheated in the shower, and they kind of, whoosh, it feels like their blood is kind of leaving their head. And then they look down and their legs are red. That's usually kind of like a POTS scenario that might happen. Basically blood is dropping to your feet, and because your nervous system isn't adequately telling your brain, send blood back up here, there's not enough blood for your heart. And then your heart freaks out and starts pumping to get the blood flow back up.
So what we often do in POTS is we give people salt so that we can get proper blood flow, it causes that vasoconstriction. And then we might give, I kind of say we wear compression socks to make our body like a Go-Gurt tube a little bit, like you squeeze it in the middle and it makes the blood go up.
Jennifer Fugo, (09:31.684)
Oh my gosh, that’s a really good analogy.
Michelle Shapiro RD (09:47.564)
So those are some treatments for it, but really ultimately you're going to have to work on the nervous system when it comes to POTS. And just one thing that I have to mention is this relationship between MCAS and POTS. One way we know that these two conditions or syndromes are connected is because, one, histamines, which I know you talk about often. You've been talking about histamines before anyone else is talking about histamines by the way, so I'm giving you OG histamine credit.
Jennifer Fugo, (09:59.053)
Maybe, maybe, but thank you. But I think we've all built the knowledge base together.
Michelle Shapiro RD (10:04.972)
Yeah, we have. So histamines, one of their features is they enhance something called vasodilation, and vasodilation is the widening of your blood vessels. All right, take us back to that scenario of someone standing in their shower. You're standing in the shower, your blood vessels open up, and then the blood drops down because there's nothing squeezing to get that blood back up. So constant histamine activation means constant vasodilation, which means you're not getting that blood flow back up. So it's really important again, if someone's having those POTS symptoms, to look into histamines as well. It's really, really important. And I've never, I've probably seen hundreds of POTS clients at this point, I've never seen a POTS client without MCAS. But if you go to doctors, they will treat the POTS by saying, let's eat more salt, let's get your blood pumping, but they don't address the root cause, which is often MCAS.
Jennifer Fugo, (10:51.44)
Interesting. Well, I think we should dive a little bit more into the MCAS piece (one of the mast cell activation diseases) because obviously I talk a lot about histamine, and we see online, histamine intolerance symptoms, everybody's like, I got histamine intolerance symptoms because I have this, that, and the other. Not everything is a histamine intolerance problem, but also everything that's histamine intolerance is not an MCAS problem. So what is the difference between the two?
Michelle Shapiro RD (11:21.197)
Yeah, one main difference is histamine intolerance, and by definition, also, histamine intolerance is it doesn't matter how much histamine you produce, it's that your body is not comfortable receiving the histamine that is there already. The main difference between MCAS and histamine intolerance is going to be the other chemical mediators, elastases, cytokines, tryptases. That's going to be a big differentiator. Is it that your mast cells are overacting, or is it that your body is just not tolerant to histamines being in the bloodstream? So someone who has MCAS is going to need a much more robust approach than just taking an antihistamine because you have to address the other thousand chemical mediators as well, even though antihistamines can be quite amazing and effective for symptom management, for sure.
Jennifer Fugo, (12:11.4)
Do you feel like somebody who has MCAS, mast cell activation diseases, like I kind of define it or differentiate it between, MCAS is sort of like where we start to enter or need the support at times of like a medical doctor. Because obviously there are medications that you need prescribed, it's not just over-the-counter antihistamines that may be helpful in certain cases. Whereas with histamine intolerance, yes, it can be severe, but I feel like there's this tipping point of where you then go, hey, I'm over here in this one bucket on the right-hand side of histamine intolerance symptoms, and then you can kind of tip over into MCAS, and then if it gets worse, it can tip over into where it becomes that disorder or disease portion.
Michelle Shapiro RD (12:59.138)
Great question. Yeah, I definitely think it's always really good to have a doctor onboard. How realistic that is varies a lot.
Jennifer Fugo, (13:05.778)
That's true.
Michelle Shapiro RD (13:27.402)
I don't think, okay, this is a very controversial statement, I don't think the doctor's office is the place where MCAS is treated mostly, because there's so many lifestyle factors that impact it. Like, if you have a stressful phone call, that can trigger a histamine reaction where you could be having temperature, you could be having a rash on your entire body. The thing about histamines in general that are so threatening is that they look like you need to go to the ER. They affect your vital signs. They affect your temperature. They affect your heart rate, your blood pressure. They affect things that would indicate an emergency situation. So in that situation, if you ever feel that way, you must go to a doctor. It's not even a question. However, I do believe that MCAS needs to be really aggressively looked at from a lifestyle perspective. So absolutely.
Here's the tricky and frustrating thing about histamines. The more histamines you have floating around in your blood, the more your body produces them. So the benefits of a temporary low-histamine diet (histamine intolerance diet) or something like that is that if you have less floating around, your body doesn't produce more. Which is a really frustrating thing that the body does that, by the way, and I wish I could change the design on that.
Jennifer Fugo, (14:12.072)
Yeah.
Michelle Shapiro RD (14:19.424)
So definitely if you have persistent and constant histamine issues, it can lead to triggering the mast cells to produce more, and then you can spill over from just having histamine intolerance into a larger issue. So absolutely I agree with you. And MCAS, in doctor's offices, they'll often treat with mast cell stabilizers, so it's not just antihistamines, it will stabilize the entire mast cell to try to slow down the pushing out of the chemicals. So yes, there are different medical approaches, but you have to treat it through the nervous system and lifestyle. It has to be.
Jennifer Fugo, (14:49.832)
I do have some questions on that, but I did want to ask you, do you think that there is something that, whether you're over on Instagram, posting, or you're probably not one of those people that gets up and starts scrolling. I tend to think most of us are sort of like, we check in and then we go out. We're not hanging out all day, right? I mean, it's just so stressful. But let's just pretend. You're over there and you see these posts. Do you feel like there are things that you're seeing consistently that people are posting about MCAS that, it's just wrong? It's bad information.
Michelle Shapiro RD (15:11.552)
Yeah. I really feel like a low-histamine diet does very little in the case of MCAS, even though I think short-term it's kind of necessary sometimes. I think thinking that you're working at the root cause or that you are getting anywhere with MCAS by only doing a low-histamine diet (histamine intolerance diet) is such a misconception. I also have to tell you, Jen, I see all the time online, people posting about the rash side of it, the allergy side of it, but I'm missing that experience of extreme panic and extreme insomnia. I've had a client who didn't sleep for 21 days straight because of histamine issues.
Jennifer Fugo, (16:40.795)
Oh my god, that’s awful.
Michelle Shapiro RD (16:46.766)
She was having psychosis as a result of it. I mean, it was extreme. And otherwise, she really had never had mental health issues before this. And that's something I really want to mention too, is that we're talking about the sensation of standing up and feeling so dizzy, and your heart pounding out of your chest, and you feeling so adrenaline-y, I guess I would say, that you're awake all night. I mean, these are extreme symptoms that people can be experiencing. So to chalk it up to like, do you have seasonal allergies and that's your MCAS thing? I'm like, I've never even met someone who that's one of their top five symptoms, you know, like that's just not the experience. Really because histamines are also very arousing because they want to keep you alert.
I just want to tell you this really quick story. I had this client, a different client who had severe insomnia that could not be treated through medications. She was on seven different psychiatric and sleep medications. She could not sleep and she would sleep one to two hours a night. By the time she came to me, I just downloaded with her and it really became obvious this was a histamine issue. I actually gave her Pepcid, which is an antihistamine by the way. Of course you know that, but for listeners, Pepcid, that acid-blocking drug is also an antihistamine because there are histamine receptors in your stomach. So the more stomach acid you have, the more histamine you produce. So this client, I said, just take a Pepcid before you go to sleep. I just want to see. She has not had a sleep issue in three years. She has slept perfectly for three years. Now I'm not saying by any means that medication is a cure-all.
Jennifer Fugo, (17:16.584)
Wow. Right, and there are side effects to taking Pepcid long-term. So we're not suggesting that's like your end-all-be-all. Even digestion, we need stomach acid, that is important.
Michelle Shapiro RD (17:44.534)
Of course, yeah, absolutely. Especially when it comes to skin, right? It's not even a question. Digestion, totally, we do, yes.
Jennifer Fugo, (17:54.994)
But that is huge, how interesting is that, that you were able to help her in such a simple way. I was just literally telling my, I have an Inner Circle group and I was, just today, I was like, you know, I know you guys don't like this, but if you are getting really itchy, sometimes you take a Zyrtec and just see, as a test, does it make things better?
Michelle Shapiro RD (18:15.49)
Exactly.
Jennifer Fugo, (18:24.156)
I know that it's a med and a lot of times we think they're really bad, but that can help you, that's information to know, did that help, did that not? I actually did an interview with a doctor, his name is Dr. Shawn Kwatra, so he was on the show. He's been on the show a number of times, but he ran an itch lab. And so he studied histamine and he presented papers on the work they've done that all itch is not histamine-driven, and in fact most itchy skin is not histamine-driven. And so I think that's a big eye opener here when you see like you're saying, oh, do you have a skin rash? Do you have eczema? Are you itchy? That does not necessarily mean that you have histamine intolerance or MCAS. And like you're saying, there is a difference between the two.
Michelle Shapiro RD (19:12.832)
It's so funny because I look at my clients. I don't know if it's just also the type of clients who would come to me versus who I sent to you, funny enough. But my clients are not, most of them don't have skin stuff. And they do have, all of them have histamine issues, at this point that's why people are really coming. But what I say about MCAS, it has a wisdom about it. It will show you your greatest vulnerability. So, for myself, like I never really had, call it acid reflux before, that wasn't a thing. But when I would have times of extreme stress, I would have acid reflux. Then the histamines hit. I was having really severe reflux. For me, because I'm a compulsive people-pleaser, overworker, working on it, always working on it, it's my nervous system that gets hit. So I'll get tremors immediately, I'll get panic. That's the way, it shows you what your thing is kind of, and it's a roadmap for that. But not everyone has MCAS by any means, not everyone has histamine intolerance.
But if you do, and then I will say this about medications, with most of my clients, we will have to use some sort of over-the-counter antihistamine at some point in time. And I'm a functional dietitian too, I don't want to use medications, like it's not fun for us, we want to use the magic stuff. But it's often needed to just stabilize. So when you release histamines, those histamines are floating in your bloodstream for three months. So oftentimes, again, and if we're talking about extreme panic and anxiety, these are symptoms that lower your quality of life so dramatically.
Jennifer Fugo, (20:39.656)
Wow. Exactly.
Michelle Shapiro RD (21:02.39)
And if you have a histamine issue that is driving mental health issues, other medications for anxiety do not address it. So you will have to address the histamine directly. If it is, this is not everyone, but if it is you, it might be you, right, that's the point. But I often do have to use, even in that window, just to block the symptoms, while we're doing the root cause work, edications are sometimes necessary, absolutely.
Jennifer Fugo, (21:12.85)
Yeah, and I love you sharing that because I find that there are some individuals who are like, okay, I get it. And then there's other people who've been kind of conditioned through following a lot of functional and integrative practitioners to believe that if they reach for medication, they have failed. They have failed. What's your thoughts on that? Because I don't believe that's true. I think that's a really bad mindset to go into this with. I would rather you find the way that works best for you, and if that includes a mix of both, that's okay. Whatever helps get you through the day. So what would you say to that?
Michelle Shapiro RD (21:50.526)
Oh my god, I agree completely. Functional medicine is not Ayurvedic medicine. Functional medicine is not Eastern TCM. Functional medicine is root cause medicine using every tool we possibly can get our hands on. That's really what functional medicine is. How do we affect the root cause while mitigating symptoms? Every tool is on the table for my clients. There's nothing off the table. If it's safe, we assess the risk-benefit ratio, but it's really about them, these are people's lives. There's no stigma, there's no morality about this. If it really makes a profound difference, and especially because we'd only be using interventions in the short-term, not for years and years and years, why would you take that opportunity away from yourself? Absolutely not.
Jennifer Fugo, (22:33.82)
Right. And you don't get the time back. That's the other thing. It's like, why are we saying I'm better or I'm doing the right thing because I didn't take the medication. yet you're suffering to the point where you can't go to work, you can't be a mom, you can't be a partner, you can't show up.
Michelle Shapiro RD (22:47.278)
There's no need to suffer. Yes, and I have to say this about histamine issues specifically, both histamine intolerance and MCAS. The more you suffer, the more you suffer. It's not like a Herx reaction, okay? So it's not like you get through it and then it's better. No, there's just more histamines floating around now. Now you just have, the problem compounds. So you really, and I don't want to scare people because I've seen people heal from histamine issues every single day in my practice. There's no fear around it.
Jennifer Fugo, (23:14.568)
Right, same.
Michelle Shapiro RD (23:22.862)
Exactly, you've been working, for years you've been working with these clients. But it's not like when you go to, you know when you go to a functional medicine doctor and they say, oh, you're detoxing, that's why you're sick. If you are repeatedly feeling worse, you are literally getting worse. So it is not safe or healthy, if you have a histamine issue, to go on these tremendous detoxes or protocols, because your body triggers a threat response. And if you can't detox those particles properly, where are they ending up? Recirculating and in your skin. So you have to make sure also, that, not only if you are beginning a detox or something like that, that your body can handle the detox, that your liver has the nutrients that it needs. I mean, again, this is like, I'm so in Jennifer Fugo-land, like I can't even look at you about the liver.
Jennifer Fugo, (24:00.936)
We're on the same page about many things.
Michelle Shapiro RD (24:20.47)
I'm like, this is the liver queen. I'm like, I can't even look at her about the liver and the gut. But honestly, if your body cannot detox properly and you have an overactive immune system that's constant, what is that? Let me mount a threat. What is that B vitamin? I don't want that B vitamin, I don't know what that is. You're not going to get the results from those protocols. So you really have to stabilize histamines first. You have to.
Jennifer Fugo, (24:31.4)
I also wanted to ask you really quickly, because we're talking about this, you mentioned connective tissue disorders, like Ehlers-Danlos syndrome and whatnot. You've talked about that. What is going on, like where's the connection there between mast cells? Because you said that happened to you.
Michelle Shapiro RD (24:50.348)
Yeah, I love it. So I cluster these conditions, MCAS, POTS, and hypermobility, all together in a bundle. And it's because one leads the other, leads the other. So in hypermobility, there's either the genetic side of hypermobility, and then some people have just generalized joint hypermobility, which I mean, literally your joints extend past the point that they're supposed to. So I'm a bendy knees kind of hypermobile, so my knees go backwards kind of when I'm standing, it looks like that, and my hands too, as you can see. Basically hypermobility on the genetic side, which would be, there's different types of Ehlers-Danlos syndrome, EDS, you might see it online, is a connective tissue disorder. Connective tissue lines our joints, our bones, and our blood vessels. I'm smiling. I'm like, ooh.
Jennifer Fugo, (25:37.212)
I see where this is going, because we keep talking about blood vessels here. So yes.
Michelle Shapiro RD (25:49.39)
Exactly. Ooh, here she goes with the vasodilation again. So first of all, having persistent and ill-timed vasodilation and vasoconstriction could potentially lead to leaky blood vessels. Which then is going, if you already have hypermobility, you already have the risk for leaky blood vessels. If you have leaky blood vessels and things are leaking out, your body is going to mount an immune response. Now also your mast cells, they're really immune cells, that's what they do. They live in your connective tissue. So if there is perceived leakiness, inflammation, as a result of it, you move your joint out in the wrong place, your mast cells are going to react and say, oh you shouldn't have done that, essentially.
Now POTS, again, is related to our nervous system function. There is dysautonomia features of hypermobility as well, as our brain doesn't have the connection because we can't build connective tissue properly to send blood flow to the right place, to hold us up properly, because our joints and our bones don't hold us up essentially. So the issue is, let's say there's someone with hypermobility, what's very common is, a subset of hypermobility or a location, is having something called upper cervical instability. So what happens in hypermobility is that, while your brain is supposed to send the signal to your stabilizer muscles to hold you up, and this is like the stabilizer muscle of this part of our body.
Jennifer Fugo, (27:05.544)
Yeah, the throat. The throat, cervical spine, that kind of, yeah.
Michelle Shapiro RD (27:10.722)
Yeah, exactly. This is supposed to hold us up. And people with hypermobility, we don't get that message. We get, this should hold you up. Not as stable. So what ends up happening is we don't have the structural integrity to hold us up. We're kind of like bobbleheads because our body doesn't have it. So what happens is we have impaired, there's your vagus nerves in your neck, right? So here's the issue with the POTS. Anything happens to your neck, you're also going to have a nervous system response, your brain is going to say, send the blood flow here, send the blood flow here, make your heart pump.
Jennifer Fugo, (27:17.511)
Wow.
Michelle Shapiro RD (27:39.734)
So anything that happens where there's looseness of those joints, there is also going to be an interface with your nervous system, which signals where does the blood go? So your blood kind of doesn't know where to go and you don't have the structural support to hold yourself up, essentially. So a lot of times people with POTS will get something called coat hanger syndrome, which is basically like if you picture a triangle in the back of your head, they get heat and a lot of pain in the back of their neck from their occipital lobe down through their shoulders. And that's because their muscles are trying to hold them up, because this is supposed to be holding them up and they don't have the structural support. So then they have all these other things tightening to hold them up. So we think of hypermobility as being flexibility, when in reality it's often just no structural integrity combined with muscles that are trying to hold you together, essentially.
Jennifer Fugo, (28:27.836)
Wow, that is so fascinating. I really wish I had one of those three-hour podcasts because I have so many questions and I love talking about this and you are just, I love the work that you do because I know how committed and passionate you are to helping people. And this is a really, like you shared in the beginning, this is tough. This is not like, oh, I'm a little itchy, I eat this food and I feel itchy. Like these are pretty, these are life, potentially, wrecking situations.
Michelle Shapiro RD (28:35.246)
Yeah, I wanna give you a statistic on that if you don't mind.
Jennifer Fugo, (28:57.618)
Please, go ahead.
Michelle Shapiro RD (29:00.322)
They were doing this state-by-state study and they found two things. One, they found that about 34% of the US population on average has long COVID, by the way. So the numbers of this are extreme, and I put MCAS and POTS under that long COVID umbrella. That's the first place I go when I hear someone has long COVID. And then there was another study that found that those with long COVID have lower quality of lives than those with stage four cancer because the fatigue is so extreme, and the symptoms are so unexplainable, and they don't have the support of practitioners or family members.
If you say to someone, I have stage four cancer, people are gonna really rally behind you and they absolutely should. But people who are experiencing long COVID, people are like, you're faking it, what's wrong with you? Get up, stop being so lazy. You know, why are you so anxious? Get over it. That's really the perception. And these are extreme, just extreme vital sign-driven conditions. It's scary. Can you imagine, you're living your normal life and it feels like everything's just turned upside down. So I have the most compassion for people struggling in this arena, not the most, I have equal compassion for people struggling in all areas.
Jennifer Fugo, (30:17.288)
100%. Yeah.
Michelle Shapiro RD (30:26.786)
But I so get it because it really is a condition, also, that there's this cycle where your nervous system gets so scared of these symptoms that the cycle kind of perpetuates, the threat continues, the limbic system gets involved. So you really have to be, honestly, Jennifer, so above and beyond optimistic when it comes to this set of conditions, you have to be like, I'm gonna heal no matter what, because your brain is listening to you so much. And it's so impossible for me to say that to someone because I'm like, I know you're suffering and you're like, get out of here, hippie-dippy crap, but it really is like that, it's just that kind of syndrome. You have to act like that.
Jennifer Fugo, (30:55.026)
You do, because how you think what the outcome will be, I forget who said that, wasn't it, whether you think you can or you think you can't, you're right?
Michelle Shapiro RD (31:04.056)
You're right. Exactly.
Jennifer Fugo, (31:08.762)
And so it's not that toxic positivity. I think there's that, oh, everything's fine, when it's not, that's toxic positivity.
Michelle Shapiro RD (31:16.674)
That's gaslighting yourself. Exactly.
Jennifer Fugo, (31:27.676)
Right. But to say, I believe that I can heal from this, I believe that I can get back the quality of life that I feel like I deserve. And it's not like you're asking for a 20-room mansion with super power luxury cars. I have clients, and I'm sure you have the same, who could not just go swimming, couldn't wear shorts, couldn't wear shoes because of how bad their skin was. And to be able to do that again, that simple thing. Or to be able to take a photo with their family because at this point in time, they're not like, I don't want to document how awful I looked and see myself 20 years from now, and everybody else looks happy and I look miserable. The fact that they can do these common, simple experiences of life that make our life so good and sweet.
Michelle Shapiro RD (31:42.86)
And regaining your identity too.
Jennifer Fugo, (32:09.808)
Exactly.
Michelle Shapiro RD (32:10.934)
The pain side of the skin conditions that you're talking about can be so extreme. And like you said, aesthetically, it can be so challenging that yeah, having a moment where you're not thinking about even fixing the problem, not even thinking about the pain of the problem, but thinking about fixing it, and regaining those moments. I mean, it's worth it. All of it's worth it. 100% agree with you. And to get your you back in all that.
Jennifer Fugo, (32:26.653)
Yeah. So I love the fact that you have a quiz. So for people who think that they might be in this category of the highly sensitive bodies, tell us a little bit about how they can kind of sort that out and what is that tool that you have for everyone, to share?
Michelle Shapiro RD (32:53.678)
Absolutely. So we have a program and we have a quiz. So I'll tell you, Jen, when I was in the worst throes of my MCAS, there was a point I couldn't walk. I'm looking at this computer chair in my office. I literally had to move from the bed into the bathroom, I had to lift myself onto the computer chair, because my heart rate would go up to 180, 160 to 180 every time I would stand up, I would wheel the computer chair. And literally at the time, I went to the best naturopaths and functional medicine doctors, I mean, the best in the world, unquestionable. No one wouldn’t think they're the best. And they had no answers for me. And I found myself on Reddit looking for answers. I didn't know where to go.
And so what I basically decided was, once I crack this code, I'm going to find a way to communicate this to other people. So I created a resource called the Highly Sensitive Body Hub. It's literally an information center, and you can search based on symptoms you have. So it can be like dizziness, fatigue. And you can also search based on, is it MCAS, POTS, long COVID, or hypermobility? And it's really just, if you don't understand why your body's doing these things, it's like a guide for that. So to even determine if the Highly Sensitive Body Hub is something that would be relevant to you, we created a quiz called Am I Living in a Highly Sensitive Body? And it's basically just a really simple free quiz to determine if you might be living in a highly sensitive body.
Jennifer Fugo, (34:15.132)
Awesome, we'll share that in the show notes for everybody so that way everyone can go and take this quiz. I think it's really helpful because we're living in a world where, like you, you go to the doctors, and sometimes you even go to natural medicine doctors, and no one has answers. And so I know the quality of what you share with people, especially because you've been through it.
And you have also been, I love the fact that you have really spoken against this idea, I mean, functional medicine has some really great things to it, and some of it has been turned into some things that we don't like so much. And I love the fact that we can have these honest conversations and help people find their way through what can be very complex and devastating situations in their life to regain that semblance of, like you said, being able to do the normal things without having to, I don't know. Just, having a good quality life is so important. We don't get that time back. And I'm just so reminded and so grateful of the work that you do because you're giving that to people, you're helping them to find it again, and that's so important. So you also have a podcast as well. What's the name of your podcast so that everybody can tune in?
Michelle Shapiro RD (35:34.638)
I have the Quiet the Diet podcast, woohoo. We're on a break right now, whenever we start recording again, Jen, you're the first person that's getting back in. It's a podcast where we explore functional medicine, functional nutrition, body positivity. And like you said, I'm willing to eviscerate anyone in our own community lovingly, never by name, but we all need to be held to higher standards and not prescribe supplements and not give any root cause support, and I hold us to very high standards, because I do believe that functional nutrition and functional medicine are so incredible. And the promise of what it was when it first started was so there, and we've kind of gotten away from that. So we explore that a lot on the podcast.
And I just have to say, I'm such a huge fan of your work for so many years, Jen, obviously, and you really have been tackling these issues before anyone else. I'm so grateful to be here. I'm so grateful to be friends. And I thank you for having me on so much, too.
Jennifer Fugo, (36:32.306)
Thank you. Well, thank you for being here. You'll have to come back. We have so much more to talk about.
