Burning Mouth Syndrome: Root Causes, Hormones & Nervous System Healing

Introduction to Functional Edge and the Guest 0:00

turns out that using hormones plus a couple of other things gets about 65 to 75 percent of people their lives back because this is like any chronic pain condition you become isolated you don't make plans you stop socializing You can't pursue your interests because you're in pain. You don't sleep because your in in. And you gradually lose yourself, which is the most, you know, saddest thing about, any kind of chronic pain, yeah. Welcome to the functional edge. I'm Dr. Julia Ward, and this is where science meets real world strategies for living healthier, sharper and stronger.

From uncovering hidden environmental toxins to unlocking peak performance and mental clarity, we cover it all. Ready to take control of your health and thrive? Let's dive in! Hello and welcome to the Functional Edge podcast. I'm your host, Dr. Julia Ward, medical director and founder of Balanced Body Function Medicine. Today, we're honored to welcome Dr Susan Sklar to show. Dr Skler is a Harvard-trained OBGYN and functional medicine expert who specializes in helping patients age gracefully through hormone restoration, nutrition, lifestyle medicine, and personalized functional medical care.

In this episode, we'll be discussing Burning Mouth Syndrome and the broader connections between chronic pain, hormones, inflammation, nervous system health, and functional medicine. So stay tuned for an engaging conversation that promises to empower and inspire your path to wellness. Welcome. Thank you so much for having me. I really appreciate the opportunity to get the word out about this very puzzling condition. Yeah, yeah, great. Well, why don't you start by telling us like how you got into this?

Because your burning mouth is not something that we learn about in medical school. No, it's not, and most doctors are really puzzled when patients come to them and tell them they have oral burning and it kind of feels like you drank a really hot beverage. Only your mouth feels that all the time. And there are a few doctors that diagnose it and I'll have patients say things like, my doctor said I have, the good news is I know what's going on with you, you have burning mouth syndrome. The bad news, is that I've no idea what to do for it.

And the fact that 90% of the people that have this condition are perimenopausal and menopause women.

How Burning Mouth Syndrome Entered Clinical Practice 2:23

And we as a group, we get written off. We're not believed. You look in the mouth, there's nothing you can see. I have people tell me they referred me to a psychiatrist. They admitted me a psychiatric institution. Just not admitting that there was something possibly physical and blaming it on people's psyche. I mean, there's definitely a stress and psychological component to this as well as any chronic pain. We all know that. But it's not as if it is all in your head. So I kind of fell into it and I had after a 25-year career in OB and then GYN, I got into functional medicine.

And at that point in 2007, it was called like anti-aging medicine or longevity medicine, which is actually a more kind recent term. And I started working with hormones not just like the estrogen and progesterone I had worked with previously as an OBGYN, but a broader look at hormones, you know, looking at DHEA and pregneen alone, learning about underlying causes for things. But one of my very first anti-aging patients was a woman who was the physical trainer. And so she was aware of her body composition and her energy levels and that sort of thing.

She wrote a little testimonial and I had at that time was like a one page website because back in 2007, nobody had like multiple tabs on their website and stuff like that. It was, like, a single page that told about my practice. A little testimony and she wrote, after two months on my hormone program, my energy is better, and my burning mouth is not nearly as bad. And I posted it on the website and I didn't really think about it. Then people started getting in touch with me and said, you treat burning-mouth syndrome?

Well, I better find out what this is. And so I had never heard of it, in spite of 25 years in OBGYN. I never ran into it. Probably if I ran it into, it I have no idea what it was, so it just kind of went right out of my head. So I started doing a lot of reading in the neurological literature about, like, what do hormones have to do with pain? And nobody was talking about it back then, and I was reading things like brain research reviews, you know, this like highly technological literature, psycho-neuro-endo-immunology literature.

And it turned out, I thought, well this must be how they work, that things progesterone and DHEA and pregnenolone are anti-inflammatory for nerves, they improve nerve to nerve transmission, and they help in nerve regeneration. And I thought, well, that must be how what's happening. I mean, what else? How else can I explain it? And so it started with that. It turns out that using hormones plus a couple of other things gets about 65 to 75 percent of people their lives back because this is like any chronic pain condition.

You become isolated. You don't make plans, you stop socializing, You can't pursue your interests because you're in pain, because your in a pain and you gradually lose yourself, which is the most, saddest thing about any kind of chronic pain. And so about 65 to 75% of our patients on this program get their lives back. It's not that they never have pain again. People get flares, they get stressed, and they may get a flare. We have backup things for them to do if they're experiencing a flair, but they are able to get back to functioning, eating a wide variety of foods.

The other problem is their nutrition, because if your mouth hurts, you don't eat salad, carrots, or citrus. Anything acidic, you don't need tomatoes or tomato sauce. And you end up eating like rice and white bread and ice cream because cold makes it feel better. So the issue of nutrition ends up being part of the treatment that needs to be done. And so it started with this one woman and I gradually started treating more burning mouth patients and learning from patients, and also learning the doctors that treated them.

Detective Work: Stress, Mast Cells, and Viral Reactivation 6:54

So there was an incredible neurologist at Duke who we both co-managed a patient, and I learned about low-dose naltrexone from him for central pain. I already knew about it for autoimmunity, but I didn't know about for pain, so starting people on a hormone program will get a number of people feeling a lot better. Some of them respond even further to using low dose naltrexon. And so I have people on a regimen with estrogen, testosterone, progesterone, and DHEA and pregnenolone we all know are very anti-inflammatory and they're very important in nerve function.

And somewhere along the way, I saw the term after about five years, somebody used the word neurosteroid and I was like, oh my gosh. What is that? So these steroid hormones are actually made in nerves, not only in our adrenal glands and reproductive organs. So that was a whole other interesting thing. And I'm not sure when you give people hormones what exactly it does to their production of neuro steroids, but the fact that our nerves and our brains are making these steroids hormones really kind of pulled the whole thing together for me.

Yeah, yeah. Wow, that's amazing. So you often describe yourself as a health detective. When somebody presents with burning mouth syndrome, what are the clues that you're looking for beneath the surface that conventional medicine usually overlooks? Right. So, you know, the conventional medicine approach to neuropathic pain, and this most likely is a neuro-opathy, in some cases it may be a small fiber neu-ropathy is to give people one of the either antidepressants or anti-seizure medications, which work for some people and work probably better for other neurophathies like diabetic neuROpathy and some other types of neuRopathy.

They don't work that well for burning mouse syndrome. So the question was, okay, hormones play a role. We know that stress plays a roll because a lot of times the story I'll get was I had an extremely stressful time in my life and that's when the burning started or this like patient zero that I took care of. did really well for a while, and then she went through a divorce and her burning came back. So she used high-dose lipoic acid, which may work or may not work. It depends on, you know, whose study you read.

But that helped her, with her flair. We know that stress plays a role. The question is, I'm listening for, they fill out all these health forms and stuff, but I always say to them, ''I want you to tell me your story from the beginning.'' I want you to tell me everything that was going on when this started, how it started. Who was in your life? What was on in you life?" Looking for how much of a role stress is playing. And then I ended up kind of, in terms of the health detective, piecing things together here and there.

A very smart naturopathic doctor that worked in my practice said, I heard a talk by a guy named Lawrence Afrin. He's a really well-known hematologist, oncologist that's big in the math cell, you know, kind of functional medicine arena. And she said, he has this case series about burning mouth syndrome. two case series with a few people that he felt it was mast cell activation and he put them on antihistamines and their burning mouth got better. So my detective work is trying to figure out does somebody have kind of an overactive mast-cell system going on.

I interviewed a woman last week who was like very fair like you are But her cheeks were bright red, her forehead was red and her chin was read. And I said, oh, do you have a sunburn? Or she's like, no, I get like this in the afternoon. I say, that's mast cells in your skin. They're everywhere. Because I see people remotely, have them do a test called dermatographism. If you take your fingernail and you run it down the skin of your forearm and wait a few seconds, If your mast cells are overactive, you'll have a pink line or maybe a bright red line.

And she indeed did. So that was part of the detective work is, is mast cell activation playing a role in her burning mouth syndrome? And so I've kind of pieced things together. There's a doctor in Colorado who's an neurologist who published a couple of, and these people just publish, a couple of case studies in a paper about viral reactivations, either varicella, which is shingles, or herpes. And some of these people don't have, like, cold sores or ulcerations in their mouth. But these viruses live in nerves, a lot in the trigeminal nerve, that feeds your face and your mouth, and when the viruses reactvate, it can contribute to burning mouth pain.

So using high dose antiviral medicines, like Valtrex, which is a pretty potent pharmaceutical. I try to stay away somewhat from potent pharmaceuticals, but I want to do what works. And so some of more like herbal and natural things I haven't found to be as effective. Somebody published a paper using Valdrexx. So I always try and look for some scientific backup for what I'm doing. And so it's kind of accumulated over the last 15 to 18 years of reading papers. There's a paper about zinc and burning mouth syndrome, zinc deficiency.

There are papers about, I can't think of anything else off the top of my head, but a number of magnesium, magnesium deficiency.

Hormones, Neurosteroids, and Chronic Pain Relief 12:40

And so there are like scientific papers here and there. I keep like combing through the literature and applying functional medicine because if somebody's zinc levels are low, number one, we know it affects their immune abilities, right? But it effects nerve function. It affects neuropathic pain. And so I do like to find scientific papers that will show, you know, that it works. And I have, for most of the things that I implement, there was a paper on thyroid function in women with burning mouth syndrome.

They actually had a control group, which was group of menopausal women without burning-mouth syndrome, a group with menapausa women, with Burning Mouth Syndrome, and the women of Burning-Mouth syndrome had much higher rate of low thyroid functions. than the non-burning mouth patients. And when they treated their thyroid and gave them thyroid medication, their mouths felt better. So I've kind of like, over the years, like added these various kind pieces of the puzzle together, put together a regimen for somebody to try to solve their problem.

Well, many of our listeners are familiar with symptoms like brain fog, fatigue, anxiety, gut dysfunction, or hormonal changes. How often do you find burning mouth syndrome is connected to the broader systemic dysfunction rather than just being an isolated oral condition? a lot because it affects perimenopausal and menopause of women who have all those problems. And it's not as hard to sell these days to implement a hormone program, but 15 years ago, you know, the women's health initiative came out 25 years and the country was still reeling from the effects of that hormones are terrible and hormones, they're going to kill you.

Hormones are going cause strokes and Alzheimer's. So to try to convince people to be on hormones You know, I have a whole bunch of like handouts written up about, you know evidence and what the evidence shows. So it's not such a hard sell now, but the fact is that hormones mainly have side benefits, not side effects. And so what happens is people who are tired and can't sleep and their sex drive is low and they're energy is poor. If they are on testosterone, it helps their sexual drive and energy.

if they were on progesterone and it helped their sleep. If they're on estrogen and their hot flashes go away and they can sleep better also, they like feel better overall. So I run into that a lot. And like hormones, you know, for all of those symptoms, people feel in a whole variety of ways and in their mouths feel much better. Yeah, yeah. Why is it that you think that these changes in hormones can be such a tipping point for chronic inflammatory or painful conditions? I think it may have something to do with some of the underlying causes.

I know recently Dr. Jill Carnahan came out with a really nice article about menopause and mast cell activation. So I thing the decline in hormones makes your mast cells more active, and if that's a component of your burning mouth, it's going to flare at menopus. And I don't know hormones are involved in nerve function. The ones that are the most involved like DHEA and pregnenolone actually kind of gradually decline as we age. It's the estrogen and the progesterone that really like fall off a cliff at menopause.

But I think it may all be through nerve function, a lot of it through declining nerve functions. Yeah. And in functional medicine, we often talk about load or total body burden. What are some of the hidden drivers you commonly uncover in these patients, like nutritional deficiencies, nervous system dysregulation, toxins, infections, stress technology? Right. Yeah, well, I mentioned some them already. So certainly reactivated viral infections like aricella, which is shingles, and herpes. This group of people has the highest Epstein-Barr virus titers that we in my practice saw in any of our patients.

And it may be related to chronic pain. I have to say treating it like we usually treat Epsteen-Bar virus, which I use natural treatments like loracidin for people with chronic fatigue and it makes their fatigue better. doesn't seem to help burning mouth. So I think there's an Epstein-Barr virus connection. I'm not sure about the best way to treat it. Got it, yeah. And then the other thing that happens, and so like, yes, there are a lot of nutritional deficiencies. People are notoriously deficient in zinc.

Our diets are low in You know, we found that out during the pandemic when we started looking at zinc levels because we're worried about people's immunity. Yeah. Seeing low zinc, I see a lot of high copper. And one of the contributors to high coppers actually having been on birth control pills. So high copper drives zinc down. And so the two kind of act in a seesaw and high coppers not good for nerve function either. So we work on raising zinc and trying to get copper levels down so those nutrient imbalances more, I wouldn't say only deficiencies, but imbalanced.

Yeah, yeah. CoQ10 is important. A lot of people with burning mouth syndrome will have two other things going on besides the pain. One is dry mouth and the other is taste abnormalities where everything tastes metallic or everything taste salty. And what I found is as their pain improves, those things improve also. So I feel like it's part of the nerve malfunction. And the dry mouth isn't, if you measure somebody's saliva production, they generally have adequate saliva reduction.

Systemic Drivers: Nutrients, Thyroid, and Menopause 18:38

It's a feeling of their mouths being dry. Also a filling of, the inside of them mouths feeling rough when it is totally smooth, but it feels rough. And it's part of the, you know, the nerve dysfunction. And so those things all seem to improve as the pain improves. I gotcha. So, yeah, I feel like the biggest takeaway in terms of you know, the broader picture of how does this fit into menopause is really more how the medical establishment approaches perimenopausal and menopposal women. And I think that's probably the biggest hurdle in the whole thing.

Yeah. Have you noticed a connection with mold or mycotoxin illness? So I'm looking for that, you know, as an underlying source of inflammation. I have had some people who have, high mycotoxins. They've tested their houses. Their houses do not seem to be moldy. And so there does not really seem Okay, so chronic pain can profoundly affect identity, relationships, sleep, mental health. What have your patients taught you about the emotional and psychological impact of living with invisible pain? A lot, really a lot.

To have something where nobody believes you, where you look okay to your friends and family, Like, you look fine, what's the problem? Is really difficult. And I developed an online course for people with burning mouth syndrome. Oh, wonderful. To explain all of these like potentially underlying causes and for People to look into what else can it be. Could you have thrush, which is yeast in the mouth? Could You have various other oral conditions? One is called like inplenus that can give you burning.

But also in the course is how to speak to friends and family because you need support. They don't think anything is wrong with you. You look okay. Your doctor says everything looks okay, so like what's the problem? Yeah. And there's a whole biopsychosocial aspect to pain. You know, doing relaxation exercises, stimulating your vagus nerve so that you stimulate the parasympathetic nervous system, all helps with pain. And there are a number of practitioners that work with people. There's even an app for your phone called Purable Health, where you reframe your pain, so catastrophizing about pain which is a normal thing to do.

You know, feeling like this is never going to go away. I'm going be like, this the rest of my life. My life is gone for good. Whatever years I have left, they're shot. All of that worsens pain. And so doing things like learning to say, I am having a bad day, but I will have better days in the future. Because your pain pathways go all the way up into your brain, through the emotional center of your, brain and back down. And so if you are stimulating the, emotional Center, the fear center, of, your Brain, it amplifies the pain.

Right. Yeah. So doing things, you know, It's not like acting like la-di-da, everything is fine, but it's trying to calm your nervous system so that that pathway is not so activated. Yes. Helps with reducing pain, Yeah. Yeah, it's sort of interesting, you know, when people are on pain meds, like narcotic pain, med and they would often pair it with like Xanax, which is a benzodiazepine and it takes away anxiety. It doesn't do anything for pain. But it take away that, kind of fear component takes way that anxiety, not that I'm promoting the use of those, but I just think that that's, why people would use it so much is because it would take way, that Right, and there are ways to do it without being on a potentially difficult medication.

The ironic thing about burning mouth syndrome is that clonazepam, which is an anti-seizure medication that is actually in the benzodiazepam family, if you put it directly on your tongue and mucous membranes in your mouth, can relieve pain tremendously. So interesting. It's not the sedative or anti-anxiety effects. it has some direct nerve function. And so what I advise people is if you're going to use it, you melt it on your tongue for a few minutes and whatever is left you spit out. You don't swallow it.

Okay. And with doing that, it doesn't go through getting digested, going through the liver, which is how you induce tolerance when you're on, whether it's narcotics or benzodiazepines. So I found that that works well without people getting addicted or building tolerance. That's a great little tip. But in general, we try not to have people use those. Right, right. So there are other ways to calm your anxiety, you know, and there in the functional medicine arena, we're very aware of vagal activation and getting that

Invisible Pain, Emotional Impact, and Nervous System Regulation 23:58

part of our nervous system, the calming part, of your nervous to come into play. Yeah. One thing I find fascinating is the overlap between chronic pain, cognitive decline, and nervous system dysfunction. Have you observed connections between burning mouth syndrome and broader neurologic or neuroinflammatory patterns? You know, it's interesting because I had actually a patient who said because he not only had burning mouths, he has a neuropathy that affects his toes. And he said, how many of your patients have some other like neurological condition going on?

I was like, you know, Dawn, that's a really good question. I'm gonna look. And so I looked and about a third of burning mouth patients, have, some, other, burning or neuropathic pain condition. The original patient I told you about that got me into this whole thing, used to have burning on the skin of her back. That got better when her mouth got, better. Other people have burning hands and feet, part of, you know, a distal neuropathy, what we call disto-peripheral neuropathy. Chronic fatigue syndrome.

Restless leg syndrome, so one of the, y'know, parts of detective work is figuring out, could your dopamine levels be low? Because when dopamine level are low, You get restless legs, and dopamine is a pain dampening pathway in the spinal cord. So I find out if people have restless legs. If they do, there are medications, they're pretty potent, but there also are amino acids. We know that neurotransmitters are made from amino acid, and there amino-acids like tyrosine and phenylalanine that will turn into dopamine.

And that helps some people with burning mouth syndrome. So, you know, there are a lot of, like, neurological connections besides burning mouse syndrome that go on with these same patients. Yeah. Wow. So you're certified in the Bredesen Protocol for Cognitive Decline. Do you see parallels between the functional medicine approach to cognitive health and your approach chronic pain syndromes? I do. I mean, it's looking for underlying causes, right? Don't you look for viral causes of cognitive decline?

Do you not look at hormonal causes? A lot of what I've learned about replenishing nutrient deficiencies, I learned first in the Bredesen Protocol, but then I found it in The Burning Mouth literature. So, yes, lots of parallels for sure. You know, whether it is nerve function in your mouth or the nerve functions in you brain, those things are affected similarly by a number of different things. Yeah. And how important is nervous system regulation and limbic system retraining in recovery from chronic pain conditions like Burning Mouth Syndrome?

Yeah, so there are some, you know, notable names that do limbic recovery, and I haven't found them to be as helpful as some of the... There are a couple of people, they're psychologists. One is Rachel Zofniss, who wrote up the Pain Workbook, And she has exercises, like I mentioned, that you reframe your pain, You reframes how you're feeling. And the other one is Nicole Sachs, and she has videos on YouTube. And similar kind of thing is reframing. So not so much some of the protocols that are limbic specifically retraining, but these certainly do affect the limbics system because that's your pain center.

Like I said, when that gets activated, the fear center gets worse. We'll be sure to put those in the show notes for people so they can reference those because that would be really good. Conventional medicine often focuses on suppressing symptoms. Your work seems much more focused on restoring resilience and physiology. What does true healing look like for these patients? Right. So it's true about conventional medicine and conventional things like, honestly, narcotics don't really work for this. In one way, it has been easier for me than, you know, if you're dealing with people with narcotic, that's a whole other issue to deal with.

Narcotics do not really seem to do much. And like I said, antidepressants, things amitriptyline and nortriptaline, are supposed to work for neuropathic pain, but they cause dry mouth. So if your mouth is already dry and you're on a medication that makes your mouse even drier, then you can barely talk. You can't barely eat. Yeah. Those conventional things don't really work out. I can't say we don't cure anybody with Burning Mouth Syndrome. I cannot permanently regenerate those nerves so that you could go off all hormones and all, you know, nutritional supplements and be okay.

People end up, I tell them honestly when they start, we're managing this. We're not curing it. Yeah. But what it looks like is, I had Thanksgiving with my family for the first time in three years. I'm drinking coffee again, which I love and haven't been able to drink it. Okay. And back to eating salads, and I even have a vinaigrette dressing on it! I'm going out with friends and although there's some things I don't order, I can eat at a restaurant again. So I am getting back to socializing, being with my family, getting to do the things that I love to.

Yeah, that's great.

Neurologic Overlap and Functional Medicine Parallels 29:28

That's what it looks like when it's successful. Good. So for practitioners listening to this episode, what are some early warning signs or overlooked symptoms that should prompt them to think more broadly about chronic oral pain? Well, I think the most important thing is don't write people off when they say their mouth is burning and you don t see anything. Yeah. You know, if you even know that this exists, even if don' t know what to do about it, you know at least refer somebody. And these patients have seen dentist, oral surgeons, neurologist, allergist ENTs, psychologist, psychiatrist, you name it.

By the time they come to see me, they've seen five to seven different kinds of practitioners. And my practice is a virtual practice, but I really don't feel like I actually need to physically look in somebody's mouth. They've already had eight different people looking in their mouths. So I think the main thing is, you know, in functional medicine a lot, we recognize that there's so much we don't know. Yes. We're always reading and learning and looking, right? Right. I mean, conventional medicine, number one, doctors are incredibly overworked.

And it's really hard for them to carve out time to like learn something new. And so a lot, they may be stuck in kind of what they already know. Burning mouth is not something that much of anybody knows. So, you know, I'll have patients come to me from, from far and wide and say that, They're working with a local doctor who believes they have something wrong and, you know, eventually they got this diagnosis but doesn't know what to do, but is willing to take directions. So I will give people recommendations that they can take to their local practitioner.

Oh, that's nice. Yeah. Yeah. And our course does that too. It has a whole list of recommendations. Oh, that's awesome. I have a hormone sheet. it says what your level should be and how much you should beyond the range. So you can just take that to your local person. Great. That's great. We'll definitely put that in the show notes as well. Thanks. Yeah, I'll give you that. Have you found that oral health and the microbiome, whether gut or oral, play a role in these patients? And if so, how? Yeah, so I did for a while do testing.

There's oral microbiome testing that's very valuable because there are a lot of oral bacteria. We know that our risk factors for Alzheimer's and risk factor for cardiovascular inflammation. And I also used to do testing for sensitivity to dental chemical alloys and products. None of that seemed to lead anywhere. So I'm not saying the oral microbiome is not very important. It doesn't seem to provide a solution for burning mouth syndrome. The gut? Absolutely. I'll tell you how I figured that out. Somebody was on her hormone program and living in New York, she was doing really well.

She turned 50 and she got her, at that time, recommended 50-year-old colonoscopy. So she did her whole GI clean out with the stuff. and her burning mouth came roaring back. And I was like, okay, there's really a major gut nerve connection here. So when that happens, I've learned I put people on a high dose probiotic. The other thing is butyrate. is a very important, for a chain fatty acid that's made in the gut, it's important for neurological function. And so when you wipe out your gut microbiome getting ready for colonoscopy, and I'm not saying that people shouldn't have colonoscopies,

Treatment Strategies and What Healing Looks Like 33:08

they're really important. But you need to understand what happens when get a prep for it. is you wipe out your microbiome, and so that butyrate, which I think in burning mouth patients is really important, isn't made for a while. And so I put people on butyrite, visbiome which is a high dose probiotic, acacia fiber. Acacia is the fiber that nourishes your healthy bacteria in the gut. Okay. And so they're on a program like that for a month or so and then things get better. It may have been that eventually they would have gotten better just waiting for the microbiome to come back, but usually it's within a couple of weeks that goes back down.

I've had this happen in a number of patients. There's definitely a big gut-burning mouth connection. Yeah. And I think dysbiosis may play a role. I have somebody whose burning is a lot better, but her dry mouth and a coating in her mouth is really bad. Okay. And which is unusual because usually if the burning gets better the dryness gets. We're going to do a GI map test to see if she has dysbiosis because that may be causing the coating and our mouth. Yeah. Yeah, that connection. So I find that more doing full analysis in the gut and correcting that rather than doing oral microbiome testing is helpful for people with burning mouth syndrome.

But there, yes, there's definitely a connection between. Your oral biome is your gut biomes extended, you know, it's called one tube. It's just that in terms of treatment and relief, It seems like addressing what's found in the gut microbiome has been more effective than oral microbiomes. Okay. What are some of the biggest misconceptions patients are told before they finally find someone who understands this condition? Oh my God. Well, that there's nothing that can be done. And so I can't tell you how many people have told me, I went to the Mayo Clinic, went this major oral pathology, waited months for an appointment.

I got there and they said there was nothing I could do. So I was up crying all night looking on the computer for a solution and I found you. I hear this over and over again. So that the biggest problem is thinking that nothing can be done. Okay. I mean, that's why I want to get the word out. Yeah. These people with burning mouth syndrome are on the computer more than any other group of patients. I have ever encountered. Yeah. And we see people, you know, with all kinds of chronic problems that are on the computer trying to solve their chronic fatigue and stuff like that.

The burning malpatients, because there seem to be so few solutions for them, they are constantly looking on their own behalf and good for doesn't have much to offer. I don't know anybody else that's doing. And in the literature, I've looked at the literatures since 1980. So like, you know, 40 years worth of literature on burning mouth syndrome. There may be five papers about hormones and burning Mouth Syndrome. This is in a condition that 90% of the people that have it are perimenopausal and menopause of women.

Yeah, yeah. And those four or five papers, some of them use things that we don't have in this country. Like one is a paper from Europe, and they have a hormone product called Tibolone. I don' know if you've ever heard of it. It's like an estrogen-progesterone combo. it's not either of those hormones, but it has steroid hormone actions. That made Burning Mouth better. Premrin in one study made burning mouth better, But there's, like, out of thousands and thousands of papers four or five papers in a very small number of women, and they showed benefit.

And I'm like, why aren't these oral medicine departments thinking about hormones? They work. That's kind of my mission is to get the word out there. They may work for more than burning mouse syndrome. One of my associates, Dr. Forrest Tennant, treats a really difficult condition called adhesive arachnoiditis.

Gut Connections, Misconceptions, and Hope for Patients 37:28

That's a spinal cord condition. And he was the first place I read about using DHEA and pregnenolone. This was years ago, 10, 12 years, ago. He's just written a book, it's on Amazon, about hormones and chronic pain. He really thinks that that's going to be the way the future in treating neuropathic pain. Yeah, yeah, absolutely. Well, looking ahead, how do you hope functional medicine changes the feature conversation around chronic pain disorders that currently fall through the cracks of traditional care?

Absolutely. I think functional medicines is going be who gives us the answers. looking for root causes. And I can't say it's a root cause of burning mouth, which if you address it, it is going to disappear. But at least we find contributors that will relieve it. Yeah. Something to give people some relief. That's right. Start getting their lives back. Correct. So if somebody listening today feels dismissed, unheard, or hopeless because they've been told everything looks, quote, normal, what would you want them to know?

Keep advocating on your own behalf because nobody cares about your health as much as you do. And so you've got the internet. There's some like not such good information on the Internet, but there's a lot of good Information on The Internet and I think if you keep searching you'll start finding solutions and like you said functional medicine getting in those arenas really offers hope to a Lot of people who have not had solutions. Yeah, absolutely Well, how can people get in touch with you? What is your website?

Well I have a website. It's SusanSklarMD.com. Okay. So it's my name, MD.Com. And we have the course, which I can send you the link for. it is on my website I Have a Kindle book on Amazon about Burning Mouth Syndrome that kind of summarizes everything. Awesome. And we'll be starting health coaching also along with our course to help people learn how to interface with their practitioners. It's an overwhelming amount of information in the course because I kind of wanted to give people everything I knew so that they could get a solution.

But it's a lot of material, so we will have health coaches helping people. And then I see patients virtually. So I'm licensed in four different states, and if you're in a state where I am not licensed, I work with your local practitioner and make recommendations about labs to order and medications to prescribe. Awesome. Well, thank you so much for joining us. And thank everyone for me on the Functional Edge. I hope today's episode gave you fresh insights and practical tools to level up your life.

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