Lifestyle Factors That Truly Change EDS Outcomes with Dr. Ina Stephens (Ep 187)

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Ina Stephens, MD: [00:00:00] This is not a deprivation food guideline. We are not going on a diet, again, diet. When I hear diet, it's a four letter word and it that can mean all these things. Well, I can't eat that because you know, Dr. Stephens said it wasn't good for me, and that's not true.

Dr. Linda Bluestein: Welcome back. Every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility md. A Mayo Clinic trained expert inhalers Danlos syndromes dedicated to helping you navigate joint hypermobility, connective tissue disorders, and live your best life. I'm so excited today to be speaking with Dr.

Ina Stephens. Dr. Stephens is an integrative medicine specialist and has such a fantastic approach to treating people with EDS [00:01:00] and HSD. We're gonna learn so much from her about. All the different lifestyle type interventions that maybe you've heard about, but you don't realize how incredibly impactful they can be.

Dr. Ina Stephens is an integrative medicine expert and it is integrative medicine that helped me get my life back. It is the facets of my men's PMM method, which stands for movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements. That got my life back on track. We're gonna be talking about some of the facets with Dr.

Stephens today. Dr. Ina Stephens is a physician specializing in the care of patients with Alos Danlos Syndromes. She's the Associate Medical Director of the UVA Health EDS and Hypermobility Disorder Center, which she founded and led as interim director until the appointment of Dr. Daker Knight. At the University of Virginia, Dr.

Stephens advances multidisciplinary clinical care, education, and research for complex conditions, including connective tissue disorders, chronic pain, and autonomic dysfunction. She also plays [00:02:00] AKI role in the bendy bodies UVA collaboration, which brings academic expertise to a broader clinician and patient audience.

With Dr. Knight serving as a recurring co-host on Bendy Body's UVA educational programming. I'm so excited about this conversation because I know that improving sleep, improving movement, and these other lifestyle factors can make a huge difference in a person's life. These are not things that you usually can talk about in your regular doctor's appointments because there just simply isn't enough time.

As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.

I am so happy to be back with Dr. Stephens again, and it is such a pleasure to get to talk to you. Thank you so much for taking the time to speak with me today. 

Ina Stephens, MD: Oh, thank you for having me back, Linda. It's really a pleasure to be here. 

Dr. Linda Bluestein: of course. So, a lot of people might [00:03:00] wonder how you became an accidental EDS specialist.

Of course, for a lot of us, that is how we got into this, right? So can you describe your training and how you ended up caring for so many people with Ehlers Danlos syndromes? 

Ina Stephens, MD: Absolutely. and, I get this question a lot, how, why you as an infectious disease specialist kind of ended up seeing all this kind of complex care.

And I do wanna start out by saying, you know, infectious disease training and an infectious disease specialty is very. Complicated. It's complex care medicine, at least it always has been to me. And so, just a little bit from my background. I did get my subspecialty training in infectious disease and actually specialized in infectious disease and vaccinology.

I was a vaccinologist for, about 20 years, 18 years or so. And working on vaccine trials, you know, writing NIH trials, on all different [00:04:00] kinds of vaccines and basically doing phase one, two, and three vaccine trials on, both children, young and young adults and adults. all in different phases.

and I really enjoyed that and I loved doing infectious disease. and I was a program director. Also for both the Pediatric residency and for the pediatric Infectious Disease Fellowship for almost 15 years. And while I was doing that, I think that this was the first thing I wanna emphasize is that I really noticed that a lot of the residents and a lot of the medical students would come and present a patient to me with, you know, this is what's going on, and Dr.

Stephens, this is what's going on. And they would just be talking and talking. And I felt like half the time they really weren't paying attention to the issue. They were so in, I have to tell Dr. Stephens this, like, I gotta remember this. I, what's going on here? My pager's going off. And they really couldn't, to [00:05:00] me, I felt like they weren't.

Really listening and I ha I felt like sometimes I'd be like, all right, settle down, take a deep breath, focus and tell me what's going on. Because that is how I practice. I really, when I am looking and talking to a patient to really listen to a patient, whether you're doing an infectious disease history or a complex medical history, or an EDS history, if your mind is all over the place and you are just trying to get stuff done and getting to the next patient, you're not gonna hear what the patient has to say.

You, you just won't. So I have used a lot of my own integrative kind of, you know, practices, and I'm gonna call them mind body practices, yogic practices. We can talk about that of quieting myself down so I can pay attention to how I'm feeling to myself, and then I can tune in and pay attention to the patient.

And when you do that, you [00:06:00] hear the problem. And when you are doing that and the patient is talking, you are developing a huge differential diagnosis. And for people who don't know what a differential diagnosis is and talking to the audience, that is, you know, my mind kind of, I'm thinking what things could be causing these issues that the patient is telling me about.

And I, in infectious disease, you have to have a very broad diagnosis and thinking about it. Otherwise you may miss the actual problem. And I'll give you an example. So if a patient comes in with a cough in a fever, typical, you know, let's say complicated pneumonia, and I may get consulted and I have to be thinking of a very broad differential, and that may include some of the weird parasites and fungi and all that kind of thing.

If I'm not thinking about. Let's say Histoplasmosis one of these invasive mycosis or fungi, I'm not gonna [00:07:00] ask the specific question that would put them at risk for that. I'm not gonna say, oh, do you live in an old farmhouse where they're ripping down the walls maybe and you're inhaling some of these spores?

And half the time they may say, that's the answer, you know that. And so I can kind of work the patient up that way. Well, a patient with EDS is very similar. If I'm not thinking of this broader problem, and if I don't have this in my differential and maybe some of the comorbidities, I am not gonna ask the directed questions that need to be asked.

I won't say to the patient, so when you are getting dizzy, do you happen to maybe have a facial flush? Or you know, just kind of putting the question together so that I am able to get the answer. And that's how I practice medicine with complicated patients. And so. When I started seeing patients in a lot of my complex care practices and the clinics that I think I told [00:08:00] you about last time I ran, I run the Autonomic Dysfunction Clinic, the Long COVID Infectious Disease Clinic, that Diagnostic Dilemma clinic.

These patients would come in and I would be having that idea in my broad differential. So I would ask the question and it was like, ah, you do have hypermobility. This is actually your underlying problem here. And then once you begin to recognize it, you just recognize it in more and more patients and then the patients start coming to you.

So that's a really roundabout way of saying how I kind of fell into seeing these complicated patients. And it's been a long journey and I think, I, think that also, knowing a lot about EDS, as I've mentioned before, my family has it, I have EDS, I, I know a lot of the comorbidities, so it's in my differential in terms of some of these complicated patients.

So that kind of also, naturally [00:09:00] helped. 

Dr. Linda Bluestein: Right, right. So you were doing this reflective calming approach and you started picking up on these trends. You started noticing that more of these, I just wanna make sure I understand, because although I've worked with plenty of infectious disease doctors as an anesthesiologist, it's not like we crossed paths a lot of times.

So it's not like I'm super familiar with how they would approach, like you said, a differential diagnosis, which I love that you brought that up, because I do think that's an important thing for patients to understand. I often tell people that it is smart to describe your symptoms and not label them.

Because you want to keep the differential diagnosis more broad, and if you start labeling them too much, then everyone's gonna assume that's what that is and maybe they won't be thinking of other things. So I'm really glad you brought up about the differential diagnosis. So you started to see these patterns though in the patients that you were seeing with infectious disease, and then more and more of those patients started to come to [00:10:00] see you.

is that correct? 

Ina Stephens, MD: Yes. Yes. Very much so. and there are also infections that may actually set you that, that, predispose a pa person with hypermobility to actually, maybe they're at higher risk for example. I'll, take COVID. and obviously seeing patients with long COVID, symptoms, There are a lot of reasons for this, and I don't know if this is the time to really go into some of the pathophysiology, but patients, patients that are hypermobile are higher risk to developing long COVID potentially when they have a COVID infection. and in fact, anywhere there's a number of studies that have shown this, that anywhere between about 30 and 55% of patients, I think 55 may be a little bit overstating, but somewhere between maybe 30 and 40, [00:11:00] maybe up to 50% of patients with long COVID have some aspect of hypermobility.

and it may be because, you know, being hypermobile and having something abnormal with the connective tissue, we all know that the connective tissue is intimately involved with your immunologic system and. Inflammatory responses. So potentially there's been a higher inflammatory response. It's potentially your immune system in whatever way.

It has not been functioning absolutely appropriately. It put the patient at higher risk for developing long COVID. So a lot of the long COVID patients that I was seeing, happen to also be hypermobile and developing some of the comorbidities that we see, particularly mast cell and autonomic dysfunction.

Dr. Linda Bluestein: As we're talking, I'm realizing that we definitely need to do a follow-up conversation about infections in people with EDS and HSD. So I'm going to ask all [00:12:00] the listeners to please submit your questions. Go to bendy bodies podcast.com and please submit your questions for Dr. Stephens for a follow-up conversation.

That's going to go more in depth on COVID long COVID OVID. Things like, you know, Epstein-Barr virus, all these things that we know can influence our patients. There's a lot of interesting information out there and I think that's gonna be a great follow-up conversation. I'm glad you brought it up right away.

I'm eager to see people's questions 'cause I know that we're gonna get lots of great questions. And, right now let's go that now into the integrative medicine part of your approach and why that is such a good fit for people with hypermobile EDS and hypermobility spectrum disorders. 

Ina Stephens, MD: Okay, great. and I'm happy to answer those questions that in the next, the follow up podcast.

Absolutely. so when I talk about the integrative approach to medicine or integrative medicine, what that really means to me is that, and how I explain it to patients and medical students and residents, [00:13:00] is that I just have a larger toolbox. In terms of how I'm going to treat the patient, we've all been taught in western medicine, conventional medicine.

We know that box and we know it really well, and it works well. and it works well for symptoms and diseases and giving a treatment. Sometimes it's just giving the treatment but not really getting to the underlying problem. And why did the patient. Kind of have this problem to begin with, and is there any way to possibly kind of quiet that down and heal the underlying issue so that we don't have that problem again?

Sometimes conventional medicine really doesn't address that, whereas integrative medicine includes, I, don't really like the word lifestyle medicine, but it is lifestyle medicine and it includes so many aspects of how they're living their life that is working to heal the patient. I think that you have a beautiful little acronym that you use for this.

[00:14:00] Your, your pns, you know, 

Dr. Linda Bluestein: yep. 

Ina Stephens, MD: Mes pmm, sms. Your mems. PMS. Yes. The mems. PMS. It's, you know, the sleep, it's the nutrition, it's the supplements. it's all these different aspects to what is going on with the patient, but. and what's going on with their lives and using it to make the patient live their best life.

you want them to heal and feel good and quiet down some of their inflammation and inflammatory responses so that potentially they're maybe not having such a problem with a comorbidity, or they are able to handle the comorbidity better, or we can work to really healing some of the underlying issues.

So the, and the integrative, medicine toolbox can be as wide as you would want it to be, but I think all the, you know, the key points that you hit in your acronym are really important. Nutrition. I wish it, you know, [00:15:00] I used to say this to my kids, but you are what you eat. I'm sorry.

You're, so, if you're gonna eat, you know, Cheetos and Doritos, you're gonna feel like a Cheeto. In a Dorito, you're gonna feel pretty lousy, you know? But if we could put some really good Whole Foods, foods that, you know, work to kind of quieting down inflammation, and I am, you know, I, do wanna talk just for a moment about nutrition in terms of different types of diets are obviously important for different types of patients, and there's no one size fits all.

There's no that you should be on this diet or that diet. And I also do not like the word diet. I say diet is a four letter word. You know, it's you, if you go on a diet, you're gonna go off a diet. These are, food changes, they're food substitutions. It's a way of learning how to enjoy what you're eating and it's making you feel good.

So there's no perfect diet for anybody. some patients [00:16:00] need, you know, low histamine diet with, if that's working for them in terms of mast cell activation. Some piece that patients need for, especially with EDS, need more of a gastroparesis friendly diet. some piece patients have issues with food restriction and diet is not something you wanna talk about, particularly on the first, you know, couple of, you know, encounters wanna work with the patient.

But what I try to do is emphasize foods that are whole foods that are high in Omega-3 fatty acids, foods that are high, low in processed ultra processed foods. foods that are stripped of fiber. So low fiber diets are not as great for your microbiome as a high fiber diet. and foods that are probiotic enriched.

I'm a real believer that the microbiome, is AKI to, healing your body in [00:17:00] a lot of ways your microbiome produces, and most people know this, or if not, I hope we can emphasize this, that your microbiome's producing about 95% of your neurotransmitters, your serotonin, your gaba, your dopamine, your oxytocin melatonin.

It doesn't really come from your brain, it comes from your microbiome. And your microbiome is, you know, it's going to mandate how you are feeling and your stress responses. So I think, diet is, or dietary guidelines is, really important. the, and I could talk a lot more about that, about how the short chain fatty acids work and, you know, in terms of quieting down inflammation.

But the other thing that I really wanna emphasize in terms of, you know, the gut brain access and just your microbes, your microbiome is [00:18:00] also basically dictated by your parasympathetic nervous system. So in patients with EDS, in patients with long COVID, in, patients that have high stress levels have an imbalance of their autonomic system.

and for a lot of different reasons. But let's just take a typical person who just lives in this world and is on sympathetic overdrive, right? So they're living in a society where it's, you know, they're doing this, they're getting outta bed, they're moving, they're shaking, they're. They're on sympathetic overdrive and their parasympathetic tone is really, not doing what it can do.

And your vagus nerve, your vagal nerve tone mandates the movement of your GI tract. It is what is turning on your microbes to make the short chain fatty acids. It's the, you know, it's the impulse from the vagus nerve that's taking that [00:19:00] message from your microbiome back to your brain. Make those neurotransmitters get everything moving.

So improving your vagal nerve tone. and there's lots of ways to do this. we talk about this a lot in integrative medicine about vagal nerve stimulation, about deep diaphragmatic breathing. Different types of breathing techniques that enhance the vagus nerve can really start healing your body from the ground up.

So these are two things that I really emphasize when I first start seeing a patient. The, the additional, the supplements, the herbal medicine, sleep hygiene, all these other, modalities are really important. But I always start with this 

Dr. Linda Bluestein: and I love that you're bringing up right away diet and the sympathetic and parasympathetic nervous system.

And I made jotted down some notes. I have multiple follow-up questions related to that. So, so I agree [00:20:00] diet definitely can be a four letter word. I think of it in the context that you were using it also in that it's just the foods that you eat. Like you're not going on a diet per, per se, of like, I wanna be on a diet to lose weight.

'cause we know a lot of our patients with EDS are normal weight or underweight. And as Dr. Knight and I were discussing the other day. That's actually more problematic is the patients with EDS that we have that are underweight, they tend to really have a lot of problems and can get into trouble very quickly.

So, I tend to think of diet the same way of like, you know, we wanna be careful how we use that word because yes, a lot of people are at risk for eating disorders or disordered eating, but at the same time I think of diet as just like, oh, well what foods is the person eating? and I also wanna back up about the microbiome because, most people probably now have heard that word, but in case they haven't, that's basically the bacteria that are in our intestinal tract.

correct. And they're, we have like a reciprocal relationship with [00:21:00] them. You could probably describe the microbiome way better than me. So, can we just back up and define that and then also, yeah, no, let's back up and define that. 

Ina Stephens, MD: So, yeah, so your microbiome actually is the, the bacteria that make up the friendly bacteria, if you wanna put it that way, that make up, the, your entire lining of your GI tract.

In fact, you have a microbiome everywhere in your body. You have a gynecologic microbiome, you have an oral microbiome, there's a skin microbiome. We have more microbes, or good bacteria, I like to say good. We have more good bacteria in our body than we do cells, literally by probably, you know, trillions more.

and they, they really, and they, and we're learning so much more about the microbiome, about how important the microbiome is in terms of day-to-day functioning and healing of the body. [00:22:00] And, one huge aspect of this is that the microbiome does. Convert a lot of our amino acids, let's say tryptophan when you're eating trytophan.

Tryptophan comes from protein, meat, Turkey, heavy laden in tryptophan, you know. so it takes that amino acid and it converts it to. Serotonin, multiple different path. You know, it's not a one step deal, but it will eventually turn into serotonin. And so if you are, even if you're eating healthy foods, if your microbiome is maybe damaged and there's lots of weight can be damaged, even just this, a course of antibiotics can wreak havoc to the microbiome.

Usually just for a little while, and then it can kind of get back together if we can replenish it with some micro, you know, probiotic enriched foods and a lot of fiber microbio, the, the microbiome. These bacteria really use fiber to make the short trained [00:23:00] fatty acids, the butyrate, the, you know, acetate that is used in these conversion reactions from tryptophan to serotonin.

Again, I'm just using that one example, because there's tons of examples with the, for the neurotransmitter, but this is going on throughout your entire GI tract all the time. so a healthy microbiome is, is really essential, in terms of, really starting to heal the body. And again, the parasympathetic nervous system, particularly the vagus nerve, sends a signal to the microbiome to start this.

Production of the short chain fatty acids to getting it all to the brain. it leads it right up to the brain. I mean, there's lots of different pathways and we could talk about that. I have lots of diagrams to show you on that and the gut brain access. but it's really, very important. and, I definitely wanna emphasize again, the.

The point that you [00:24:00] brought up about this is not a diet. A patient really should never be on a diet unless this is like, you know, this ex, you know, extenuating circumstances, potentially some kind of diet. But these are food changes and just food substitutions. Like for example, what I say to a patient would be, well, if you're gonna have a piece of bread, maybe instead of a piece of white bread, which is all stripped of the fiber, maybe we can have a piece of, you know, whole grain, really nutty bread, the kind of get the seeds, get stuck in your teeth.

Almost like, I don't wanna talk brands, but Dave's killer bread, something like that. Just I love that bread. That's my 

Dr. Linda Bluestein: favorite. I 

Ina Stephens, MD: love that bread. Put whatever you want in the sandwich, but just that change from the white bread to the whole grain bread. Not necessarily the white wheat, you know, the colorized white wheat bread, but the real fibrous bread.

That can make a huge difference. I say to patients, you know, you like french fries, fine make half of them white potato, half of them sweet potato. [00:25:00] So we get more of a complex carb with more of the fiber in it. and it actually has more, probiotic and rich, features of sweet potato compared to a white potato.

Eat just as much, have maybe brown rice instead of white rice and trying to decrease the amount of processed foods. I think it's important to look at labels. if there's a lot of ingredients on the labels that you can't pronounce, that's a warning sign that there's a lot of chemicals in there.

There's probably a lot of added dyes just to get onto the added dyes. This is a huge problem with patients with mast cell activation. and they don't necessarily realize that until I say, well, let's talk about, you know, I had this one patient that came in, said she had her mast cells really well under control until she was eating Skittles.

You know, I said, oh, maybe, it was that the red dire, the [00:26:00] blue dye, because dyes can absolutely turn on a mast cell response. That, and dyes are in everything. So looking at that kind of, like what is maybe in the food and kind of decreasing it, I think is very important. the other thing that you just mentioned about diet and being underweight and a lot of our patients are underweight, we try to have them gain.

Not only weight, but good muscle weight and increase their muscle tone. a huge problem with patients that I've seen over the years, and I'm sure you see it, with EDS HSD, MAs, cell, autonomic dysfunction and pots and long COVID and reactivation of EBV and all this is chronic fatigue. Chronic fatigue is overwhelmingly a huge problem with patients in this category, as [00:27:00] we all know.

And. What is really important to understand is that the energy from your body comes from your muscles. Your muscles are your energy warehouse. They have the mitochondria that's going to start producing the A TP. A TP is the energy that is kind of produced when you eat anything, you know, when the food is broken down to glucose and we release a TP, the majority of that's made from your muscles.

So the more muscle we have, the more energy you're going to have. So getting over a little hump of building some muscle and having that muscle fatigue. But then once we get the muscles going and gaining a little weight, gaining a little bit of good muscle weight, we're gonna start feeling more energized.

So that's really important. It's something I emphasize in every patient. So, I wanna talk about [00:28:00] that aspect of integrative medicine, if you don't mind that. I think exercise, physical therapy, we could talk about all different types. particularly engaging your core muscles, which are the largest muscles in your body, are not only gonna help you produce energy, but there's one other thing that most people don't know that is exercise, particularly aerobic exercise in increasing the core musculature will increase the.

Bacteria in your microbiome to be more of the good friendly bacteria, particularly something called the firmicutes bacteria. and the actino bacillus, and in that category is lactobacillus bifidobacteria. those are probably the most prominent ones. but actually exercise has been shown to increase the production of those microbes in your.

GI tract and [00:29:00] those are the microbes that are more likely to start pumping out the good feeling neurotransmitter. So exercise is not just for your muscles, it actually is doing so much for your microbiome as well. 

Dr. Linda Bluestein: How does that work? I've never heard that before. How exercise? That's fascinating. That's so interesting.

Ina Stephens, MD: It is fascinating. it is absolutely fascinating. And there's some really, and I can actually get you these studies in the show notes if you would like. Yes, please. so exercise has been shown not only in humans but also in animal models. It was first shown in, mice. Mice models, and mice models that, had been just, you know, they're stripped of their microbiome and or they, then they replenish their microbiome.

It's, you know, they can do that with mice samples, mice populations, not the human population. The other, interesting part of the study is that you have to have your vagus nerve intact for this to [00:30:00] happen. So a lot of the studies in terms of engaging the microbiome when these mice were activated to, and, you know, to start exercising is that it turns on the vagus nerve.

So they did these studies in mice where they removed the vagus nerve and they showed that. Absolutely no difference. These mice had zero energy still chronically fatigued. Their microbiomes were not doing what they needed to. And then the mice who had the intact vagus nerve, they developed more lean muscle mass.

They had a, their, measurements of their, neurotransmitters were higher. and they were healthier mice. So I can get you those studies. I can get you those in the show notes. 

Dr. Linda Bluestein: Yeah. That's so interesting. And it's so interesting, the correlation with muscle mass and energy and fatigue, because I talk to people about fatigue all the time.

It's a very common symptom, as you said, but it's also very challenging for people, like you said, to get over that hump. [00:31:00] So focusing on, you know, little incremental increases in the amount of movement that they do. But also, I love this. I'm gonna, I'm gonna start telling people this right away, that if you increase your muscle mass, that will actually help you with having more energy.

I didn't actually realize that. That's very interesting. 

Ina Stephens, MD: Yeah, and it's not that much, you don't have to do that much. So when you know, and you can't tell a patient who has been, you know, sick with long COVID or with EDS who's been in a wheelchair perhaps, and not really been able to, you can't say, well, why don't you just get up and do an hour of Pilates?

Or, why don't you go run on the treadmill? That's inappropriate and that actually is gonna cause more problems. And we get a, can have a whole problem with post exertional malaise with that. So it's small little increments. I will often show in the clinic to a patient maybe one or two, sometimes three little core exercises like, you know, sitting against a wall and maybe doing a wall plank, [00:32:00] or a wall squat, or holding a plank pose.

And I would say hold it for 10 seconds. Then maybe you do three of them. So your exercise for the day is about a minute, maybe. And then we slowly increase. But just even starting to do that is going to make a very big difference. and, sometimes there are, this is a place where potentially supplements can help.

This is a place where making sure that their sleep is good quality sleep. A lot of patients have trouble not only with sleep initiation, but staying asleep. And they will say that they have been asleep for 15 hours. They're all, they, all they're doing is sleeping. But their quality of sleep is not really good.

They're not getting into deep sleep. They're rest restless. You know, they're restless throughout their, night. They're up and down in just little stages of wakefulness and they're not really getting good [00:33:00] restful sleep. So potentially some supplements or working on sleep hygiene is also exceedingly important in working with a patient with fatigue.

I can talk in about which supplements I think sometimes are more helpful or not. And then there are supplements that can be helpful with potentially giving a little bit of a muscle, I don't wanna use the word oomph, but a maybe a little bit of a little bit of a boost. maybe, you know, like that will enhance some of the, mitochondria.

and some supplements are better than others. And I do have a list if people would want that. 

Dr. Linda Bluestein: I think that's a perfect. A place for us to take a quick pause and when we come back, let's talk about some of these supplements. And I have so many follow up questions already from the first few things that you were saying.

So when we come back, we're going to talk about fatigue. Some of these supplements that can help with your sleep fatigue and muscle energy, and also some of the follow up that questions that I have [00:34:00] that probably a lot of other listeners have as well. We're gonna take a quick break and we'll be right back with Dr.

Stephens.

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It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the [00:35:00] episode.

We are back with Dr. Stephens and I just started to say to her that I'm so grateful that she made the comment about exercise and movement and how we have to do this in such a respectful and slow way because right, if somebody's been in bed all the time and then you tell them, you know, go do this class, or go do this series of exercises, or some, you know, bigger thing, they're gonna think that's impossible.

So they won't even probably try doing a little bit of it. So I love that you give them just, you know, doing a ten second. Plank or some, you know, very small thing. And sometimes people even can do exercises like still in bed. doing a plank in bed is kind of hard, but you know, if they're not even getting out of bed, which we know some people are not able to get out of bed, even just trying to move more while they're in bed can really be helpful because, I found that particularly fascinating what you were saying about the muscles, because so many people are so fatigued [00:36:00] and they have so much pain.

So when they have the pain, they don't know if it's causing harm or not. So then they might move less and less. I know when I found out about kinesia phobia, I realized, oh my gosh, I'm not moving because I have kinesia phobia and because so many things hurt. But then you get your, you know, sarcopenia, your muscles start to atrophy, right?

They get smaller and that's gonna contribute to the fatigue problem. So, I love that you have some other, tips and tricks for us with the whole fatigue and sleep problem. 

Ina Stephens, MD: And I'm really glad that you brought up the point about just even the little exercises that you can do in bed. I actually have a regimen for like, just to be done in bed, because some people cannot get out of bed.

And then there's the other point that I wanted to bring up is that you just mentioned the word sarcopenia. And sarcopenia is your muscle, basically atrophying and wasting. And it's your muscles that are holding the joints together. So particularly in a patient with [00:37:00] hypermobility and EDS, HS, D, a lot of the pain, not all the pain, but a lot of the pain is due to those joints just moving around and clanking and hurting and developing inflammation and early arthritis and you know, synovitis.

And so having your muscles work to hold onto the joint can actually decrease the pain. So. But it's really important to get the pain under somewhat of a control before you do this. So one thing I do wanna say before we move on to the supplements is that I never throw the whole, you know, basket of ideas out at once.

'cause you can't do that. you can't treat a patient like that. You have to meet the patient where they are. If their number one problem is pain, we address the pain, quiets down the pain, quiets down the inflammation. This is where maybe there's a combination of using some [00:38:00] conventional medication, low dose naltrexone, tramadol, maybe some, you know, besides the NSAIDs and you know, Tylenol.

But working with the physical therapy to help build the muscles very slowly, and then we start adding more of the exercise, then we start adding maybe some more of the supplements for the muscle building. So, really meeting where the patient, where they are and making sure that we have addressed all their issues, I think is really important, just like you said.

but I do want, I, there are a number of, supplements that I think that can be very helpful for pain, that can be helpful for sleep and relaxation, and that can be helpful for muscle building. So, I can start with, let's start with sleep. a lot of the patients that come to me have problems with sleep initiation and they're taking a lot of melatonin or they're taking medication.

some of the SSRIs, like Trazodone or something like that can help a patient fall asleep. But, and that's appropriate if you're [00:39:00] not sleeping. However, it would be really nice to get off of these medications at some point, so I never take a patient completely off a medication. If they're on that, obviously I will start a supplement with it and then we will kind of wean off of a medication if, if appropriate and when appropriate.

but some really good, first sleep initiation. me, supplements are formulations of magnesium. and this is a question that I get asked all the time. What type of magnesium, which magnesium, how much magnesium. Magnesium gives me, you know, diarrhea, blah, blah, blah. And all of that is true.

Magnesium is wonderful for constipation, if it's magnesium oxide or magnesium citrate. and that's appropriate. And sometimes we need that for a patient who is who with gastroparesis and is not moving, and we, which is also a lot of our patients, but. Magnesium, L three Innate [00:40:00] magnesium, you know, glycinate, BG glycinate, formulations that are like, those are two that just come right off the top.

Those actually go straight to the blood brain barrier. They're very good for quieting down the nervous system. They're good for muscle pain. They're good for just relaxing the muscle. They're good for sleep initiation, and they're good for sleep maintenance. So, and I use a, I tend to use a high dose with this because they don't develop diarrhea.

Sometimes I will put a patient on magnesium citrate or oxide, along with a magnesium glycinate. They sleep really well, and then they wake up and they have a normal bowel movement. And they haven't been having bowel movements for like weeks. So that's very helpful. So, and magnesium, it would be wonderful if we could get it from food.

but it is even on a really, terrific whole food diet, it's sometimes hard to get enough magnesium. Magnesium in rich foods tend to be, [00:41:00] oysters, pumpkin seeds, you know, a lot of green leafy vegetables. and so I say to the patient, well, we can eat a pound of oysters or we can take this, you know, magnesium supplements.

So, and sometimes it's a combination of both. but magnesium supplements can be very helpful and magnesium can also be absorbed through the skin in a small amount. So like an Epsom salt bath, the magnesium sulfate, and that's often in the creams and in the lotions. If you sit in a magnesium sulfate, Epsom salt bath for you put like maybe one or two cups in and you sit there for 10 or 20 minutes, maybe 20 minutes, you can get an extra 50 to 75 milligrams.

Magnesium. So that can be helpful before you go to sleep. So first thing is, let's get to sleep. Let's get some good rest. 

Dr. Linda Bluestein: Can I just quickly ask before we move on to the next supplement, I'm anticipating the emails and the voicemails, 'cause people are gonna say, oh, I heard her mention about that.

It can sometimes be a higher dose. [00:42:00] but what they would love to know if you wouldn't be willing to share, and again, this is not medical advice, this is information, please discuss with your own healthcare team, but if you would be willing to share doses when we're talking about some of these things, I think that would be very helpful for people.

Ina Stephens, MD: Oh, absolutely. Sure. So, over the age of, you know, puberty, so let's say a fully, almost fully grown adolescent, I'm okay to start with magnesium glycinate usually between 300 and 400 milligrams. and sometimes a patient will need 600. Sometimes 200 does it, but I usually start with about 400. I will tell most patients, especially if I'm using something like magnesium oxide and citrate along with it for maybe some GI motility issues and constipation, that the limiting factors diarrhea.

So if you start developing diarrhea, we need to cut that back. but I find that the dose of about [00:43:00] 400 per night tends to be very helpful for most adolescents and adults. for younger patients it is depending on how much they weigh per kilogram. So I can answer that specifically, but it's more in, and I use, some, there's some gummy formulations that are smaller doses and I will give them a certain number of gummies to take per kilogram.

Dr. Linda Bluestein: So. Even if they're pre pubertal, you know, of course there's a difference between a 12-year-old who hasn't hit puberty yet and like a 6-year-old. But we do see, at least I should say, I'm seeing younger and younger people asking for help with these things, and I feel like younger children having sleep problems.

Is there a lower age limit for which you would prescribe magnesium? And what is that per kilo, recommendation if you have that off the top of your head? 

Ina Stephens, MD: Yeah, I, think about this a lot. and I get this question a lot from parents. I will have, you know, a three-year-old coming in with temper tantrums and they're up all [00:44:00] night and mom is giving them.

A lot of melatonin. and saying that's the only thing that knocks them out. I would much rather use magnesium than melatonin. I want a child to start producing their own melatonin. So again, going back to the diet, putting these patients on, more of a diet that's gonna enrich their microbiome to develop their own melatonin.

And there are a couple of other tricks for melatonin production that I wanna mention, but I will start them on doses of magnesium. I've put children, toddlers, two and three years of age, starting at 50 milligrams. 

Dr. Linda Bluestein: Okay. 

Ina Stephens, MD: Yeah. And it's, very helpful 'cause again, melatonin does not help. Sleep maintenance, it helps with sleep initiation.

But then I get the complaint that they're waking up at, you know, two, three o'clock in the morning and they're up for a couple of hours. Magnesium can absolutely help with some of the sleep maintenance. so I think that's really important. there are a [00:45:00] couple of other things that I wanna mention about melatonin production, that people don't really realize how important this is, and it's our circadian rhythm.

We are anthropologically not meant to be hanging out with fluorescent lights at two o'clock in the morning. we're just not, our bodies are not supposed to be doing that, you know, as a species. And so we get a lot of clues from the daylight. So one thing that really turns on melatonin production.

That sounds really woo, but it's, the truth is getting about 10 minutes of direct sunlight first thing in the morning that will set your circadian clock to start producing melatonin about 12 hours later. So one thing that's, that I do, I make sure that I do, is within an hour of getting up, I, those lights are on bright [00:46:00] lights or I will walk outside if it's light outside.

you know, if you have a dog, go for a, you know, walk with the dog. Don't put your sunglasses on, you know, look at the light. it can be very helpful 12 hours later, and people don't think about that. and the same thing goes at night. If you are with the, you know, fluorescent overhead lights in your eyes, hitting the back of your retina at 10, 11 o'clock at night.

Your body is saying, well, don't produce melatonin. it's, getting some kind of abnormal signal. It's time to get up. So it's very hard. So one thing that they should do is turn off those lights at least an hour beforehand, put on a low light, have lights that are, you know, at the level of the, bed.

Not so that they're overhead, but a nightlight that's, you know, or, if you even wanna read just right by your bed, but not hitting the actual, the top part of your retina. and [00:47:00] that's really important. That actually signals the melatonin hours later. So, I want you to mention that 

Dr. Linda Bluestein: and I do have a follow-up question on that because, when I did an episode on sleep with Dr.

Roger Sult, he was talking about a lot of these similar things, which I really appreciate you bringing up. 'cause I do think these are so incredibly important and oftentimes. Like you said, people going to the doctor and it's quicker to write a prescription than to really think about some of these lifestyle things that can be hugely impactful and, have very few, if any, at all side effects.

So, one thing that I wondered when I was talking to him, and I'm thinking as, you're talking, what are the best things for us to do in that last hour or two before bed? If, 'cause we're not really supposed to be looking at screens and if we're not supposed to have light overhead, should we be, we're not supposed to be in bed really either.

I don't think so. She would be reading with a, low, a lamp that's either a yellow bulb or a red bulb or, you [00:48:00] know, kind of a lower lamp or what's the best thing to do before bed to really help us. Be prepared for sleep. 

Ina Stephens, MD: Yeah. And I've grappled this with myself. This is, this is, a really, this is a really important thing to think about.

but the, bottom line is, and you just mentioned this, we shouldn't be in our bed doing anything else except for sleep. And maybe, you know, some sexual activity. To put it bluntly, you know, your, it's very hard for the brain to know what you're doing. If you're lying in bed at seven o'clock at night watching tv, and then at 11 o'clock you're like, okay, I'm gonna turn it off and roll over and go to sleep.

Your brain's like, wait a minute. I've been here before. They don't, it doesn't know what to do. So, you know, usually I, I try not to have people linger in bed for more than an hour. If you were lying in bed for an hour before you go to sleep, maybe get up. Go and sit and read with like a [00:49:00] low light read at a comfortable chair.

Maybe read for 10 minutes and then get back into your bed if you do want to read in bed. Yes. I like little reading lights that are, I actually have a pair, and I can send you these in the show notes, but they're almost like headphones. They kind of wrap around me and they have these two lights.

And so the light is not coming directly to my eye. The light is going directly onto my page. So my husband and I both have these. We both have our own little, please do send that to me. Yes, the lights are off, but I'm able to read because the book is illuminated, but the light is not shining back directly into my eyes.

and then I just click and turn them off and I will lie down and go to bed if I wanna be in bed for that last hour. So, but that's, that, that is definitely, that's something people have problems with. These little sleep hygiene things make a big difference. The other thing that's really important [00:50:00] for sleep and and, and actually brain activity, there's a lot of studies, I'm not gonna get into this, that have shown how important this is for cognition, for dementia, and for Alzheimer's, particularly in our longevity, population and thinking about going old.

And this is aromatherapy. So our olfactory bulb is directly linked to our limbic system and it's directly linked to our hypothalamus, which is our memory system. So when older people start losing their sense of smell, that's actually a real concerning risk factor to developing dementia. there's a lot of literature on that, so keeping your olfactory sense intact.

Will help not only with sleep, but help with cognition later on. So I think aromatherapy is very important. and there's certain [00:51:00] scents that are more calming to the nervous system than others. So lavender, frankincense, bergamot, lemon, bal, sandalwood. Putting that in a diffuser maybe next to your bed or, you know, what I like and my husband likes is that we put a tiny little bit of an essential oil, usually lavender and maybe a little vanilla.

'cause that's what I like. and putting that into a spray bottle with a little bit of water and just spraying it on the sheets and pillows, maybe an hour before you go to bed. So it's not wet when you go to bed, but you smelling it on your pillow. and that can actually really in help initiate sleep.

so that's just another, you know, a plugin for that in terms of sleep hygiene. 

Dr. Linda Bluestein: I love that. That's positively brilliant. And I know, I mean, you, hear people talk about that, but having you say it and saying that it also is important for cognitive. Function, as well is not just, you know, kind of like a woo kinda thing, you know?

[00:52:00] so I, I love that. I think that's great. What do you find in your mast cell patients with essential oils and in this kind of aromatherapy recommendation, do they usually tolerate it? Does it depend on what particular might be brand they're using or are there any extra cautions for people with mast cell problems?

Ina Stephens, MD: I'm so glad you brought this up. Yes. And this is absolutely something I talk about before I recommend aromatherapy. so first of all, you just, because a lot of patients are, that's a turn on for their mast cells is perfumes. So if I mention it and we discuss it, I always have them try a pure essential oil with nothing in it.

And so there are certain brands that are all organic, all essential oil, and I will tell them to put it not on them. Don't put it on you because then you're stuck with it for the rest of the day. But to put it maybe. Put a drop on a piece of paper. so I'm gonna grab a little piece of paper. I have a piece of paper right here in front of me.

You just put it on there and just have them sniff it [00:53:00] and walk away. And, you know, unfortunately that's a test. So somebody who may have a response will have a mast cell response, but at least they know they can't have that scent. And if they can tolerate that, then the next step is to put a tiny bit on their, maybe some clothing.

Again, not on themselves 'cause they can always take off the clothing, but see if they can tolerate it. And then if they can tolerate that, then on their skin, then we can move on from there. But I do have them try that with every scent because mast cells are so, I hate to use the word, particular in what they decide to erupt again.

So one person may tolerate lavender very well, but they cannot tolerate frankincense. So it. If you're going to try a new type of aromatherapy, make sure that you test it out first, obviously. 

Dr. Linda Bluestein: Yeah, I love that. And then I think the other, thing that I was thinking of when you were saying that is that mast [00:54:00] cells also can be more and less sensitive at different periods of time.

Like I used to have horrific mast cell problems, but now I'm doing so well that I probably could tolerate any of those. So I think another point for people is, you know, just because you don't tolerate something like that now doesn't mean that you can't in the future. So it's worth reassessing if you do find yourself in a place where your mast cells are happier.

Ina Stephens, MD: Well, I think that's exactly the point that we just mentioned about pain and exercise. If you're in so much pain, you're not gonna be able to exercise, so you have to address all the underlying issues. I feel that's a very important thing. First and foremost, let's see if we can quiet down some of the, you know, patients coming in with horrible pain, horrible mast cell, horrible autonomic dysfunction.

I'm not gonna spend the visit talking about aromatherapy. 

Dr. Linda Bluestein: Right? Right. 

Ina Stephens, MD: That's not where we're going. And, but, so it's in the toolbox, but potentially later on at follow up visits. [00:55:00] so first it's addressing, as best we can to quieting down some of the inflammation, quieting down pain, improving their autonomic dysfunction, making sure that they're not having episodes of dizziness and syncope.

And obviously if the mast cells are not under control, you and I know this, nothing is under control. I think the mast cells play a huge part in pain. In autonomic dysfunction, in chronic fatigue, in gi, dysmotility and gi, all the, what we call dbs or disorders of the gut brain access, I think the mast cells are, can be incredibly, important players that need to be quieted down.

Migraine, I can go on and on. so these absolutely need to be addressed while we're introducing all these other aspects of integrative therapy and [00:56:00] supplements. 

Dr. Linda Bluestein: And that's what I love about this partnership between Bendy Bodies and UVA Health, the EDS and Hypermobility Disorder Center, because, you know, we're able to share this information with people for free.

They don't have to pay to listen to this, and they're not gonna probably address this, maybe in their first visit, say they're seeing you or Dr. Knight, like they might not discuss this in their first visit, but later on they're gonna listen to this podcast and go, oh, this is something I can try. But you didn't need to necessarily take the time in a one-on-one session to go over that with them.

So this is a great way for us to share tools and tricks and hacks with people. 

Ina Stephens, MD: Yeah. Thank you. And I think that also, that's what I'm so excited about our EDS center, is that we are going, as we mentioned in the last episode, really following these patients and. Giving them an EDS home. So it's something that they can think about and maybe discuss with their PCP.

But if they wanted to message me on my chart and ask me about [00:57:00] it and say, could we talk about this at our follow up in telemedicine in a couple of weeks, or when I see you in a couple of weeks, absolutely. It's on the table. it's what we can talk about and more. 

Dr. Linda Bluestein: I'm glad you brought that up about the EDS home because I think that so many people struggle with that.

They don't have an EDS home, they don't have somebody that they can turn to. maybe they might find somebody they can go to once, but they can't go to them on a regular basis. So having that EDS home is huge. So I'm glad you brought that up. 

Ina Stephens, MD: Thank you. And I know you provide that for your patients. I think that in an ideal, world, all complex care patients would have a home that they could, because everything as patients with EDS and hypermobility know everything is connected.

It all goes together and we really have to address all of it. 

Dr. Linda Bluestein: Okay, so I wanna ask you about something that happened to me at the gym yesterday, [00:58:00] because as you're talking, I'm thinking maybe she'll have the answer for this. My husband, who's also a physician, I know yours is too. My husband didn't have a clue.

So I have been doing more weightlifting than I have done in many years, and I'm super happy about it, but I haven't been doing much cardio. So yesterday I decided that I was gonna do the recumbent bike, and normally I can only do 10 or 20 minutes at the most, but yesterday I was feeling particularly good for whatever reason.

And at about 30 minutes in, I suddenly my heart rate went like from 110 to 140, and I suddenly started to perspire and I didn't perspire for the first 30 minutes. And I was like, I normally don't perspire at all, but my hands were like super shiny and I didn't feel bad or anything. It was good. I mean, I felt.

Good that I was like perspiring and stuff. But do you have any thoughts as to why that would happen? Like 30 minutes into what was my longest cardio workout in a long time. [00:59:00] 

Ina Stephens, MD: Wow. That's really interesting. that I think that absolutely can happen. I see that happening to patience. I see that happening to, I teach yoga also, so I'll have people in the middle of class who all of a sudden like start like, like sweating and breathing fast and turn bright red where they've been like, and it's not just because we had a slow startup.

I'm actually don't teach classes like that or with myself. I think that you just had a sudden burst of like release of a TP and energy. You're, and especially since you've been doing resistance training and we didn't really get into this with the whole supplements and muscle development and fast twitch fibers and things like that, but there's certain supplements, For example, that enhance the fast twitch fiber, like, and that can be also enhanced when you're doing resistance training. And that's like creatine. Creatine monohydrate can, we'll talk about that maybe next time can enhance the [01:00:00] fast twitch fiber. And when that happens, you can have this huge production of mitochondrial activity increase a TP and it's just been happening.

And then it just kind of explodes and your body gets that in a sense of rush. You know? So I don't think that's that abnormal. as long as you weren't lightheaded with it. No. You weren't lightheaded in any aspect. Nope. I don't think that's abnormal. I think that you actually, your muscles were working appropriately and did the job that they were supposed to.

You've been training them to do that. I think that's great. 

Dr. Linda Bluestein: Yeah, I was happy about it. And I've been taking creatine, actually I've been taking creatine monohydrate. I started taking it when I started lifting on a more regular basis. And so, you know, I love what you said about the small increment. I mean, I couldn't do a ten second plank.

Years ago, there's no way, you know, but just over time I've been able to do more and more. And now I go to these, weightlifting classes and I never thought I could do something like that. So then this thing yesterday that happened was so interesting and so I was like, wait, I wanna [01:01:00] ask her about it. So thank you.

Ina Stephens, MD: That's so that, that to me is fantastic. So it's been like, you've been working, you probably plateaued a little bit and you just like reached another level and you're going to, this is probably gonna happen again and you may plateau again, but this is, I think it's great. I'm, I think that's wonderful.

Fantastic. And we will can certainly talk about creatine monohydrate next time. I think there's some really interesting literature there, not only for your muscles, but also for, brain and your brain energy and cognition. So that will table that for next time. 

Dr. Linda Bluestein: Perfect. Perfect. Let's talk about that next time.

I wanna circle back to something that you mentioned at the, beginning, because believe it or not, we are coming up on an hour and so we're gonna, we're gonna need to wrap up before too long and we had so much more that we wanted to cover. So we are definitely gonna be doing at least one follow-up conversation, if not more, depending on how many you're willing to do.

when you were talking about the importance of the gut, I have a couple of questions to go back to what we were talking about [01:02:00] in the beginning about food and the importance of food and quality nutrition and how we need those nutrients, and you are what you eat and, you know, absorbing your food is so important.

What about testing, stool? Are any of these stool tests helpful, useful? I know there's so many different companies and I was just reading a post this morning about consumer health and nowadays there's companies that are just, you know, targeting, especially people with conditions like EDS, they're really getting, you know, hit with a lot of advertising and things like that.

So it can be hard to know what's actually helpful and what's not helpful. 

Ina Stephens, MD: So I, spend a lot of time thinking about this, and as an infectious disease specialist, I just have to put in a plug for my husband who happens to be, a specialist, a diarrhea specialist, and a microbiome specialist. So this sometimes is dinner conversation.

Dr. Linda Bluestein: That's great. I love it. 

Ina Stephens, MD: But I think what's really important to know is that [01:03:00] we actually don't know too much about exactly how many microbes of this certain class and how many microbes of that certain class is right, is the right formula. And we also don't know, is that the right formula for you, Linda Bluestein, or is it right for me, or is it right for my husband or my everybody is individual.

So, and there are a lot of studies that looking at the microbiome, samples of it and then they get an answer. And I think. That is helpful if we're looking for dysbiosis or if we're really looking for small bowel, you know, overgrowth, what we call sibo. if there's too much of an unfriendly bacteria that could be causing some harm.

I think those are important. Those tests are important. Making sure that we decrease the amount of maybe unhealthy microbes, but [01:04:00] we don't really know how much femicide do we really need? How much lactobacillus GG bifidobacteria do we need per billion specimen per stool sample? We don't know that. and this is one reason that I also, there's a lot of controversy in the infectious disease community and the gastrointestinal community about giving probiotics, from a jar.

And so I just wanna ask, because I get asked this all the time, should I be taking this supplement? Patients will come in with this supplement and I will say, well. I don't know. Is that supplement that's in that jar? Did we test your, did we take a biopsy of your duodenum or your jejunum? And do we know that one in there is what you need?

Maybe it's what I need. How about you give me the bottle? Like, we don't know. Right. And so, and we also don't know how much of those microbes are still alive, even if we keep them refrigerated. it's hard to know. So I [01:05:00] very, there's only a few studies that have been done really looking at giving probiotics and which ones really work.

The best studies out there really on lactobacillus gg. and there have been some good studies on that, especially if you have SIBO or dysbiosis, that, that may be helpful. and oftentimes patients will get into the trouble with dysbiosis or SIBO if they've been given a long course of antibiotics. if they've had disruption to their bowel.

So if they've had GI surgery, if they've had, you know, if they, their gut has been opened for whatever reason, surgery, they've had an appendicitis and then their surgery disruptions to the bowel and antibiotics, then that probably is a case for giving probiotics, like particularly lactobacillus Gigi, something in a, jar and just to kind of help replenish that.

But for the most part, I think it's really important that if you are, even if you do, let's say, have SIBO or something, part of the [01:06:00] regimen is. Eating probiotic, enrich foods. and I usually give patients a list of the probiotic enriched foods. For example, probably one of the best foods out there is keifer or ke, however you wanna pronounce it, which is basically liquid yogurt.

but, and you can get this in dairy or non-dairy, I have patients say they can't handle dairy. I say, you can, you could buy soy keefer or oat keefer, or cashew keefer I've seen on the counters, you know. but this actually has the most number of microbes per, you know, ounce than any other food out there.

Even more than Greek yogurt or kombucha or kimchi. but all of these are very good. So I will tell patients have some type of fermented probiotic enriched food. Per day. Small amount, maybe it's a little shot, four ounces of keefer, one little serving of [01:07:00] sauerkraut, a couple of real fresh pickles, not the ones that are on the jar that look like this yellow color.

I don't know what's in them, you know, but the real fresh pickles, because then your body is going to take what it needs, it's gonna take the microbes from there and it's gonna utilize them and replenish your gut appropriately. I hope that sort of answered the question 

Dr. Linda Bluestein: that does. That does. And I would love to share that list.

If that's a list that we can share also in the show notes, that would be great. and that's so interesting. So my last question on that before we go to our hyper is when people are in pain and they're so. Symptoms, whether it's fatigue and poor sleep. And we're gonna, in the next conversation, I would like to continue talking about sleep supplements because I know you mentioned that there were others besides magnesium.

And I definitely recommend others besides magnesium as well. But we're gonna, we're gonna follow that up next time for sure. 

Ina Stephens, MD: Do you wanna do the same with the muscle [01:08:00] supplements? Put that on the table for next time. 'cause we hadn't even gone into that too. 

Dr. Linda Bluestein: Yep. Next time we're gonna, so I think the third part of this conversation is gonna be the infections.

I think the second part is going to be supplements, especially in regards to fatigue, sleep and muscles. Yes. So that's gonna be the next conversation, but I did wanna follow up with something, what that I was thinking about when we were talking about the importance of the gut. And I'm just thinking about my patients and even myself some days, even though I'm doing really, well nowadays.

if you're in pain or you don't feel well, or you're fatigued or any of those things, oftentimes we want. Comfort foods or we want, we might be craving sweets or we want, you know, what do you tell people that, you know, are really struggling with that aspect of things? 

Ina Stephens, MD: Well, the first thing I say is that this is not a deprivation food guideline.

We are not going on a diet, again, diet. When they hear [01:09:00] diet, it's a four letter word and it, that can mean all these things. Well, I can't eat that because, you know, Dr. Stephens said it wasn't good for me, and that's not true. And so it's, I, you really have to work with the patient. And, you know, I have a patient who said to me, you know, they, they just really love having their bagel in the morning.

It's the one thing that they don't get nauseous. It really helps them. They love it. it's their food. I said, so go eat your bagel. So maybe you, instead of having white rice with your chicken for dinner, you'll have brown rice. So it's a compromise. I never wanna tell a patient, you can't have this because first of all, it's depriving you or that's what's making you feel good.

we need, again to address the underlying issues and then we work on healing as best we can. And sometimes we can do it together and sometimes we, we can't. Sometimes it's like we gotta quiet down this pain first, [01:10:00] and if part of quieting down the pain and gi pain and whatever is, well, I need to eat that food.

I need to have my bagel or mac and cheese or whatever, then do that first. Let's make you feel that you are in a place that you could even attempt to add in these guidelines. Otherwise, I think it's setting patients up, it's setting patients and everyone up for failure. This is a long road. I say to patients, having EDS, having HSD and all the comorbidities, this is a long haul and they call long and I could throw long COVID.

They call long COVID. The long hauler for a reason. it, there's no quick fix. There's no quick answer. And if we have to baby step, well, baby step. I also say life is not linear. You know, I have so many patients, even my kids, you know, they're just like, well, we [01:11:00] should be doing this and this. And no, life is not linear.

So you're taking a little detour. You're doing this, you're taking this to help yourself out. Okay. That's okay. And I think that is something to emphasize to the patient when you're seeing them. And so that's what I try to do. 

Dr. Linda Bluestein: I love that because so many of us are, we can get, we have. I'm gonna speak for myself.

You know, some, you can get obsessive and then you know, you, oh, I shouldn't be eating that. And generally speaking, you know, you can eat a combination of foods that maybe is really good for your gut microbiome and is super, you know, I hate to even use the word healthy because of course, like you said, there's no one diet that fits all so healthy for one person is not healthy for another person.

Right. But we're aiming for moderation. We're aiming for these swaps, like you said, and not perfection. And I think that's an important thing for people to understand because a lot of the patients that I see, and I imagine you see as well, [01:12:00] because you get so, fixated on how am I gonna fix this? how am I gonna make this better?

And then they feel this incredible weight of responsibility 'cause nobody's helping them. And so they feel like it's up to them, they're doing all this research and they're trying to, you know, do this and do that. And so I love that you're painting this broad picture of how to really be successful in this space.

And, you know. Taking it with more smaller steps and not thinking of just, you know, you have to make all these massive changes. 

Ina Stephens, MD: Right. Think I Thank you. I think that's so important. You have to honor where the patient's been, where the patient is going, and knowing that this is a journey. And, I wanna say one more thing about perfect.

we are all, so many of us want to achieve perfection. I don't even know what that means. is my idea of perfect the same as yours who told me that's a good thing to [01:13:00] be? I mean, why, where did I even come up with that idea? That's not perfect in another person's eyes. So Achi, we are all very imperfect.

and we just know that this is a journey and you are going to get there. And as I, think being able to say that out loud, we'll. it just helps it, it just helps it helps me. Again, I live with this, I live with this disease. I live with this syndrome my kids do. And some days, are not perfect and I, you know, and it, that's okay.

That's okay too. 

Dr. Linda Bluestein: Yeah, no, totally un understand. and I love all of this. So we, as you know, usually end every episode with a hypermobility hack. And of course you've already given us a bunch of hacks, but maybe if you wanna sneak in one of those supplement suggestions or something here, do you have a hack that you can share with us before we wrap?

Ina Stephens, MD: Oh my goodness. I [01:14:00] had so many hacks. Actually, the hack that I had for today, we probably gonna hack it, we should probably leave for next time because it was really the one talking about the MINDBODY practices. Yes. And we have 

Dr. Linda Bluestein: to talk about that 

Ina Stephens, MD: next 

Dr. Linda Bluestein: time. Yeah. 

Ina Stephens, MD: So I, because that's really important.

But I, it does get to the first point that I brought up, so I think I'm gonna bring it back. So this hack is for the providers out there, the, I know that we have a lot of providers listening, whether you are a physician or a nurse or a PT or OT or whatever, your, a healthcare provider in some way. These patients come in with a lot of problems, a lot of issues.

And, I, again, when I see. Providers just like they're just trying to take notes and multitasking and you're gonna miss what the patient is saying. If you really take the time to listen, you're gonna hear what the patient's problem is, you're gonna hear it. And the way to [01:15:00] do that, and I think I this is the heck, is to listen to yourself first.

So before every patient encounter, I, and I practice this, so it's probably easier for me to do, 'cause I've been practicing this for 35 years, is I do a deep diaphragmatic breath. I quiet down my sympathetic tone. I try, I'm using this. That means like I'm, that's an expression that I teach with. It's, I. I, I try to get in to listen to how I'm feeling and I quiet myself down, and then I will look patient directly in the eye.

And I know because I'm paying attention to myself, I'm paying attention to them and I can hear it. and I, the, one of the best part of this hacks is that there's a beautiful book out there for providers to read that really discusses this in the how to, practice this while you're practicing medicine.

And, it's a book by Dr. [01:16:00] Ronald Epstein. he is an internal medicine, integrative medicine physician at University of Rochester. he runs a mindfulness in medicine practice and a mindfulness in medicine, symposium that you can attend if you want to. I've worked with him. I have been to this symposium a number of times.

I've worked with him. I've learned from him. I've meditated with him. I've had him speak at u university of Virginia, but he wrote a book called The Attending and it describes just this and how you could really listen and hear all these problems and know where the patient is at. And so the issues about is this patient ready to hear about this supplement, or do we have to deal with their pain first in their sleep first?

You can hear that if you really pay attention. And I think the MINDBODY practices. For the physician themselves is, the biggest [01:17:00] hack that, that you can do. That's my hack. 

Dr. Linda Bluestein: I love that hack. I love that. that's a fantastic hack. Okay. And we'll link that in the show notes as well, and I'll 

Ina Stephens, MD: get to his name in the show notes.

Yeah. 

Dr. Linda Bluestein: Yep, We will link that in the show notes so people can find it easily. Well, this was such a fantastic conversation and I'm so grateful to you for taking the time to talk to me. before you go, can you share with us, first of all, where people can learn more about you and your amazing work, and also if you're up to any special projects other than of course, getting the UVA EDS Center off the ground, which is a massive project in and of itself, but anything else that you wanted to share?

Ina Stephens, MD: sure. So the, I'll start with the big lift at UVA center and making this a center. we are moving as fast as we can in terms of growing and building the infrastructure. So I know that we, patients have heard that we have a long wait list. we do. That's true. But we are [01:18:00] hiring, as fast as we can, and we've just hired new providers.

we're hiring even more providers. we are going to, and they're all, we're all learning from each other. So it's not like if you don't get to see me all, we're all working on this together with the same types of, you know, kind of approach to patients. so help is on its way. and other, you know, and, we're working to hopefully get, Licensed in other states. So we'll be able to do telemedicine follow up in other state. 'cause right now that's a limitation for Virginia. Even if a patient will come to Virginia, it would be hard to do the follow up unless they're back in Virginia. That's a state law. but we're working on getting licensed, throughout, multiple states.

So, I think that's gonna be very helpful. The other thing that patients should know is that we have a number of different, studies. We're about to start that are coming through our IRB. They're gonna be, everything from randomized [01:19:00] control trials to, you know, basically symptom surveys.

looking at certain aspects in different biomarkers in the blood. So any patient that comes to the center, if they would like to be consented and be in a study we're, we have a lot going on. and, and they can hear more about some of this. We have a, our first annual, research and clinical symposium coming up at UVA, on April 9th and 10th.

And we have a whole. we have a really wonderful agenda, people from up and down the East coast, experts from all over, literally, nationally and internationally coming. and it is not only gonna be in person, but it will be virtual. So we can make sure that you have the link and people can sign up so they can listen to whatever pieces of it that they would like to, or they can listen to the whole two day, event.[01:20:00] 

and in terms of where people can find me, I, we, I have my own page, pediatric Integrative Medicine, at UVA, obviously we have our UVA, EDS center and you can read about me there. And I have a couple of YouTube videos. I have one on just doing some chair yoga in terms of just quieting down and just some stress reduction techniques so I can get that to you that I did for physicians.

So, but anybody can use 'em. 

Dr. Linda Bluestein: Fantastic. Yes, if you can send me those links, I'll put all of them in the show notes. Wonderful. Well, I really look forward to our next conversation and this was so much fun. I love the work that you're doing at UVA. I think it's so valuable, and I love that you said help is on the way because I feel like the saddest thing is when people lose hope and they, feel like they should give up and it's like, don't give up there.

There are first of all things that can be done and there are people that want to [01:21:00] help. 

Ina Stephens, MD: There's always something that can be done to help. There's always something. Keep on keeping on. Don't take no for an answer. Thank you, Linda. Thank you so much. I had so much fun. Thank you.

Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on substack@hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it.

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

You can learn more about these options on the [01:22:00] servicesPage@hypermobilitymd.com. You can find me Dera Linda Bluestein on Instagram, Facebook, TikTok. X and LinkedIn all at hypermobility md. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also wanna share some of their helpful resources for questions or appointment inquiries.

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

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