Bendy, Dizzy & Exhausted: Connecting the Dots - Hypermobility Part 2 with Sharon Hennessey

In Part 2 of our conversation with Sharon Hennessey—award-winning physiotherapist, founder of The Hypermobility Project, and principal of Not Just Bendy Hypermobility Services—we explore how hypermobility can impact women across different life stages, from pregnancy through to perimenopause and menopause.

We discuss the influence of hormonal changes on connective tissue, joint stability, pain, fatigue, pelvic health, and physical function, as well as the important links between hypermobility, Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS).

Drawing on nearly 30 years of clinical experience and her own lived experience, Sharon shares practical insights to help women better understand their bodies and navigate these transitions with confidence.

In this episode, we cover:
• Hypermobility and pregnancy
• Perimenopause and menopause
• Pelvic health, pain, and fatigue
• POTS and MCAS
• Practical management strategies for women across the lifespan

Whether you're living with hypermobility or supporting someone who is, this episode offers valuable insights into the unique challenges and opportunities that can arise during a woman's life journey.

Looking for hypermobility friendly clinicians? Check out the below directories:

https://www.ehlers-danlos.com/healthcare-professionals-directory/ https://potsfoundation.org.au/clinician-directory/

For amazing hypermobility resources, courses and tools please check out the below websites:
https://www.notjustbendy.com/blog/
https://hypermobilityproject.com/clinician-tools

Looking for more Healthy Banter? Check out our website at https://www.healthybanter.com.au/ or follow us https://www.instagram.com/healthybanter.podcast/

Transcript

SPEAKER_06 0:07

Welcome to Healthy Banta, the podcast where women's health gets real relatable and just a little bit cheeky. We'd like to begin this podcast by acknowledging the traditional owners on the land on which we meet today. We would also like to pay respects for elders past and present.

SPEAKER_05 0:24

Hey Jules, part two today. I'm so excited. That discussion we ha are having with Sharon is just so informative. And um it's today we go a little bit further into the latter part of a woman's life and that influence again on estrogen and hormones. Yeah, really, really important. It's really important, I think, to get that right management of it. Yeah. Um you've yeah, exercise will definitely help, and Sharon covers that and how how that helps. Yeah. But I think a message that we probably want to keep reinforcing, and it's we've sort of done this the whole way through, is we really want to make sure that you're talking to practitioners who are understanding of both the influence of estrogen on your body, but also understanding hypermobility.

SPEAKER_06 1:15

Totally. And we talked about just um practitioners that are patient with it with today, um, which was a really lovely way to to think about it. You'll hear that in the chat though.

SPEAKER_05 1:24

Yeah.

SPEAKER_06 1:24

Um we also touch on MCAS and POTS, which is part of this hypermobility family. Uh, and we delve into that a little bit more so we do explain those abbreviations in this in this chat. Uh, and Sharon so wonderfully talks about those as well.

SPEAKER_05 1:40

Yeah. And I think the more information you have on board, the better you can help navigate and find those practitioners for yourself that are both patient but also really supportive. And if you understand what's going on with your body a little bit better, you'll help them help you better as well. Totally. Yeah, be your own advocate for this. Yeah, be honest and open and absolutely advocate for yourself. Yeah. Let's get into it.

SPEAKER_06 2:02

Sounds great. So, for example, I think pots, is that the one? Yes.

SPEAKER_01 2:08

So, does anyone know what that stands for?

SPEAKER_02 2:10

Um I've got hostural, all of them, still tachycardic syndrome. Yes. Yay!

SPEAKER_01 2:18

Hi fire. So if we just break down, and this is this has got a lot more, a lot more um people know about this since since COVID. Yes.

SPEAKER_05 2:28

Okay. Why since COVID? What happened?

SPEAKER_01 2:31

Long COVID, a lot of the symptoms of long COVID are associated with POTS.

SPEAKER_05 2:35

Okay.

SPEAKER_01 2:36

Okay.

SPEAKER_05 2:37

It's not that more hypermobile people were doing less, so therefore POTS has become more relevant.

SPEAKER_01 2:43

I think that POTS has become mainstream because of the research that's gone into things like COVID. Okay. And so that has been a bit of a boom for the symptomatic hypermobile community because they'd been struggling with these symptoms for a long time and all of a sudden, yeah, you know, there's a lot more research into it. Okay. So so basically it means postural orthostatic, so it means when you're upright, orthostatics, your heart beats fast. Okay. Syndrome meaning it gives you a a variety of symptoms. Okay. So remember when I said earlier that when you stand, if you've got stretchy um veins, then when you stand, the more blood pools down in your legs. Yeah. Okay. This is the first step of POTS. Okay. So if more fluid goes down to your legs and the brain's main job is to maintain homeostasis, which essentially means keep your blood pressure around the same amount. So if all the blood's in your legs, how are we going to maintain our blood pressure? If we don't keep our blood pressure up, we're going to faint. Okay. So it decides to make the heartbeat faster. And so and this is all happening automatically. Subconsciously. This is all automatic processes. So what it does as there's a bit less fluid getting back up to the heart to maintain the blood pressure, it makes the heart beat faster as a compensation. Okay. Now that tachycardia in itself might make you feel some cardiac symptoms. It might be a feeling of racing heart, palpitations, uh, it could be some shortness of breath. Okay. But it's the system that makes that tachycardia happen that gives us lots of other stuff. So to make your heart beat fast, you have to reach into the sympathetic nervous system, which is your fight or flight response. So that's the old, oh, there's a line over there. I better run away. So you get a surge of adrenaline. Yeah. You also get a surge of cortisol. Okay. Cortisol tends to make the messages from your joints and muscles more. So it tends to, you know, increase the feelings of pain. Okay. The adrenaline, okay, that and that sympathetic nervous system excitation comes along with all those things that come with that. Okay, so you get anxiety. Okay. You get a dry mouth. Hypermobiles usually carry around a very large water bottle, and there's a very large one sitting on the desk here with me. Um, so you get a dry mouth, it turns your gut off, or it turns your gut on really fast, and you get diarrhea, right? And so all those things happen. So that's the syndrome. So often symptomatic hypermobiles may have anxiety or have been diagnosed with anxiety. And yes, they there are definitely people with anxiety over the situation and everything that's going on in their lives and their thoughts. But I used to find that sometimes with my anxiety, yes, there were those times. And then there were other times when I was just really quite chill and suddenly feeling extremely anxious, and I had no idea why. Right. And that's when I go, ah, maybe that's when I was getting dehydrated. It might have been the night before I'd had a few wines and that was affecting either fluid in my body, or maybe I'd been rage clean and suddenly got overwhelmed. And after Michael Jackson, and maybe getting a little bit overwhelmed. Yeah. So, or um, the old have a spa bath. Uh, did this with my friends one time, went to a um a beauty place and went in the big spa pools and then had to lie on the floor of the change room for an hour because I couldn't stand up afterwards. Really? Because hot water makes your vessels dilate more. Yeah, right. The other thing that offended. And if you've been a bit dehydrated going in as well. I was because we'd been drinking the night before. And you know what else I'd done? I thought as a good um hangover remedy.

SPEAKER_05 6:42

Here we go. Sharon 101.

SPEAKER_01 6:44

And I how I like a chai tea. He's at a sh at one of those juice bars and they had a turmeric chai latte. And so I drank this drink that was hot and full of turmeric. And so then my gut was like, oh, I'm really hot. I need all the I so when you have a big meal as well, all the blood goes to your gut. So that takes it away. And so it was perfect storm for me. All the little massage jets in the pool took away all my tension, all the heat, relaxed. I had a massage, they gave me a champagne, and then I was almost passed out. And they're like, my friends are like, can someone run up to the to the restaurant and get her a thing of salt? And they're like, Why? Why does she need salt? That's weird. Let's explain that here with a good segue to the side. What a segue. What a segue.

SPEAKER_06 7:33

I didn't even think I was gonna get that. Why do we need salt?

unknown 7:37

Okay.

SPEAKER_01 7:38

All right. So for people who have high blood pressure or have a family history of such or have kidney problems, salt's not a great idea without checking with your medical team. But for people with low blood pressure, which most hypermobiles have, dizziness or pots, adding salt to your diet actually increases the amount of blood circulating in the body. The way it does that is salt stays in your system and sucks onto the water through an osmolarity process so that the salt's less likely for you to peel the water away.

SPEAKER_04 8:13

Yeah.

SPEAKER_01 8:13

So then you can have more, more blood, more fluid in your body. Yep. Okay. Um, so yeah, so salt, salt can be really useful in that in that case.

SPEAKER_05 8:22

Sharon, how much salt? Like, what are we talking about here? Are we talking like just sprinkle a little bit extra on your meal, or are we talking about actually take everything salt supplement?

SPEAKER_01 8:32

Yeah. So I think if we're getting the the the journals would suggest four to six grams of salt. That's like that's a lot. That's a lot. That's a lot. Yeah. When we're thinking that our salt sort of that would be a little um six teaspoons. Okay. Wow. Yeah. Okay, it's a lot. So I'm not advocating for your listeners to go do that. But a lot of people who are fatigued and hypermobile crave salt.

SPEAKER_00 8:57

Okay.

SPEAKER_01 8:58

A lot of kids crave salt, and parents say, no, you can't have any salt on your egg.

SPEAKER_00 9:02

Yeah.

SPEAKER_01 9:03

But um, when I first worked this out and I started letting my kids salt their food and me salt my food, my fatigue dropped by 50%. Wow. Like it was it was really significant. Okay. So I personally use electrolytes. Yeah. And again, this was something I did for years when we used to work together was drink electrolytes. I never knew why. I just knew if I had one in the morning, I felt I felt better. Yeah. But see, electrolytes, the same as when you've got a stomach flu, the electrolyte drinks like hydrolyte and gastrolyte help replace your food, your fluids by giving you a bit of salt and a little bit of sugar. Okay. So I actually use a brand called Sodi at the moment.

SPEAKER_03 9:41

They're very good. Yeah.

SPEAKER_01 9:42

So it's about a gram, like 100 milligrams of salt that you mix into your big water bottle. So I have a couple of them a day.

SPEAKER_00 9:49

Yeah.

SPEAKER_01 9:49

And um, you know, uh other recommendations, salt your food. Some doctors suggest you make your own electrolytes by mixing, you know, your salt and some some nice lime cordial or something into it. Um, and yeah, it can make it can be helpful. Um, I think the if you think about it this way, there's a lot of people with these big water bottles who are like, I'm thirsty all the time, and they're drinking two to three liters of water a day and saying it doesn't matter how much I drink, I just pee it out, and I'm peeing and peeing and peeing. And so that's because they don't have the salt to hang on to it. Yeah, like salt's like a retainer. It's a retainer. Yeah. So I often, you know, say that to people and they're like, oh, okay. And then that can change. Because if you're drinking, if you're really drinking a lot and peeing a lot, you're probably not helping your electrolyte balance either. You're flushing it out. You're flushing it out. Yeah, yeah. So or diluting it. Diluting it, yeah. Yeah. So the the other thing that can be helpful, so it's salt, uh, fluid, okay, avoiding diuretics, cutting down on your coffees and your cokes and things that are gonna make you pee.

SPEAKER_00 10:57

Yeah.

SPEAKER_01 10:57

I also can't drink caffeine because I get little palpitations and go a little bit crazy. I'm already up enough without coffee, as Julie discovered, trying to find my drink water this morning. It's quite complicated. And um, I mean, I can't even have a decaf coffee at one o'clock in the afternoon. I'll be up all night. Yeah, wow. It's crazy. And um, compression. Okay, so compression's the other thing that can be helpful. So they're talking about compression stockings or compression tights. Yeah. Okay. So like from the foot right up. The research suggests the NASA style foot to um under your bra. Okay, but this is Brisbane. Yeah, it's not gonna happen. So whatever you can tolerate. Yeah, yeah. So, for example, I find when I travel wearing compression socks to the knee very helpful. Yeah. Okay. Because travel throws pots off as well, hydrostatic pressure changes. Of course, yeah. Okay. Um, some people find um they the ones that are getting a lot of um positives at the moment, the supercore.

SPEAKER_05 12:03

Is that a brand? It's a brand, yeah. A brand skins or because that's that's my I was going to ask that question. Yes. Because you know I work with like um cancer patients, so I use compression a bit, but with that compression, we have to have quite a therapeutic grade of compression, which is up to 35 milligrams. But I would imagine for someone with hot, even the skins or what was the brand you just said?

SPEAKER_01 12:25

Um skins 2XU and the new ones that are more recent at the Supercore. Supercore, okay. Yeah, so supercore are branding themselves for four pots compression. So I think they're looking, I haven't got a pair yet, but I've had a lot of people say they're very they're good at being firm without affecting your gut. I can't really tolerate anything around my tummy. Yeah, I just get bloated and sore and it turns off my digestion. And so um, you know, I've got some lululemon ones that go up to here when I exercise that I find really helpful. Some of my patients can tolerate this the um the supercores for two days a week, but not every day. You know, it's it's really an individual thing. But yes, they there are some people who go get second skins made that are higher grade compression, but I've generally found the ability to get them on with hypermobile fingers is near to impossible.

SPEAKER_05 13:18

It's it's near to impossible, or sometimes with normal fingers.

SPEAKER_01 13:22

Yes, you know, and the heat that it generates is um intolerable when you've also got thermoregulation problems that come along with pots. So, yeah, so compression can be good, um, exercise and and sort of not standing on the spot. Even just um if you're someone who can't seem to stand in a line without wiggling the whole time, yeah, then that that could be a sign that you're using your muscles to pump the blood back up, back up to your body. So smaller meals more often, a light less on the carbs, um, and before you get out of out of a chair, wriggle your feet up and down 10 times, just the way we would in hospital when you first get out of bed and you're a bit dizzy. We're always like wriggle, wriggle, wriggle, take some deep breaths. Yeah. So sort of sort of wake that circulation up before you get up.

SPEAKER_06 14:10

And what about other like I know you just mentioned carbs and the salt, but what about other diet recommendations, like good or bad?

SPEAKER_01 14:19

Yeah, there's definitely there's definitely um dietary recommendations. Uh, you know, that's not my my specialty area. I think I think what we have to talk about management, and we're talking about these things like pots, yeah, there's another big one we probably have to talk about that comes along with EDS, and we've never even mentioned the words Ellers Dowless syndrome, no, which is EDS, which is EDS, and in and in this case, there's lots of types of EDS, but hypermobile Ellis Downless syndrome is the one that that is the most common. And essentially there's a spectrum, okay? And um, although hypermobility spectrum disorder and EDS, hypermobile EDS are two distinct things, they're essentially a spectrum. Um, and one isn't worse than the other, it's just different criteria. It's a bit complicated to get into here, but so we know that with with EDS or HSD, we have the POTS overlapping and at about 80%. Okay, and then we have this other thing, Mars cell activation syndrome or MCAS. Now MCAS is a little less um a little bit more controversial than POTS because POTS has gotten some good um research behind it after long COVID. MCAS is basically um Mars cell activation syndrome. So I think of it this way: imagine um your mast cells. So they're they're an important part of your body. They hold thousands of chemical mediators. Think of them like a fire engine. Okay, so your house is on fire, you call the fire engine, it it leaks out all its chemical mediators, all it's all its um foam and froth and everything, and it puts out your fire and your house is saved. Yay! They're they're they're celebrating how great these these little cells are. What if then after that you're having a candle at dinner with your partner? Kids are out, it's just you two, and that fire trap comes back and throws the high pressure hose on you and your husband. Same system, a fire and a response, but uh exaggerated. Okay. Okay. So what we're looking at is we're sort of saying that the mast cells tend to be reacting strongly to more minor issues.

SPEAKER_07 16:33

Yeah.

SPEAKER_01 16:33

Okay, than we would think would be normal.

SPEAKER_05 16:36

Sharon, can I ask, what does a mast cell reaction, how does it physically present? Like what would you what would you be feeling when that happens?

SPEAKER_01 16:44

Yeah, so the the the questions that I ask about it, um, for a start, all the things that POTS can present with can can be symptoms of mast cell. But the other things we're we're often asking about is things like sinusitis and hay fever. Okay. Um do you have, you know, recurrent infections or illness? We're also looking at rashes. So hives, skin sensitivity, um, sensitivity to tape, you know, when physios tape people, a lot of people come up with a rash. Yeah, that's usually a sign of mast cell activation, particularly in the hypermobile population. So it might be people start going, Well, yeah, I've always had a reaction to sunscreen. Or if a for me, it was when I started being a gardener when we bought our first home and a gravelia touched me. And I had a gravelia-shaped rash on my arm in the shape of a gravelia leaf. And I'm like, Oh my god, what happened? Okay. It can also present as things like um a lot of the other things that we're seeing in hypermobility, like frequent bruising. Okay. So we're thinking that's about this before. Yeah, so so the thinking behind this is yes, running into the walls more, but also how did I get that bruise? Maybe you only touched it not too, not really strongly, but you got a extra histamine release from the I'm sorry, extra heparin released from the mast cell.

SPEAKER_00 18:09

Yeah.

SPEAKER_01 18:09

For um pelvic pain, we think that there's a very high incidence of mast cell-related problems with interstitial cystitis with recurrent UTI that don't pass the infection line. Okay. All right. And so, and also with heavy periods, so again, we've got more heparin for more bleeding. You might just, you know, uh sprain your ankle a little bit and puff up with more arm histamines. Okay. So it's sort of like that high histamine are some of the common responses, but there's lots of other pathways there as well. Yeah. And so management for that, often it's first of all, working out if there's something in the environment that you might be reacting to. And people have often done these tests and have worked things out. So, oh yes, I know I can't have soy or dairy, I've got a dust allergy, those sorts of things. Oh, yes, I know as a kid I was allergic to grass on a test. So the first thing is to remove the irritant. Okay. So, so clean your house up, get rid of any mold. I mean, that's a major problem. Um, and you know, if you know you're you should have soy milk and you haven't been doing it, maybe going back to it.

SPEAKER_07 19:17

Okay.

SPEAKER_01 19:18

Um, so it's it's cleaning up the environment. The other way you can do that is looking at your diet. So you might be able to uh approach a dietitian or a naturopath who understands that. It might be looking at a low FODMAT diet, although sometimes it can also be like low histamine diets. So looking at what foods you're most likely reacting to and having less of them. Let's not just like um I I really worry when we when we victimize food in any way or take out major groups. I think we we have to be gentle in how we make these changes. Um, and then often people are antihistamines. Okay. So often I'll say to people, look, you know, you've got the sinusitis, what did the GP? And they'll often say, Oh no, the GP said it's happy for me to have uh Telfast every day. Or sometimes they even say, Yeah, the GP said I could have two Telfast or two claritine every day, but I've never done it because I thought it might give me dementia, or people were very worried about taking medications. So I'm often saying, Well, if the GP said you could do that, why don't you just try it and see if that helps the pain or or the dizziness or any of those sinusitis? And often as we're helping the sinusitis, we're settling down that inflammation in the body, and then we're starting to digest better, and then the POTS symptoms start to come down as well. Okay, so it's like chicken and egg.

SPEAKER_00 20:35

Yeah.

SPEAKER_01 20:35

Are we hypermobile and that gives us POTS, or were we sensitive with mast cell um reactions? And and what started it? Could it have been, you know, I had glandular fever when I was a kid, and after that I had a postviral syndrome, and you start to see these common patterns the same way we did with long COVID. Yeah, okay. Yes, yeah. So um it would definitely, you know, it's something that these are available over-the-counter. I always say have a talk to the pharmacist about it, and then once we get past those over-the-counter um antihistamines, there's a whole host of other H1 and H2 blockers that you can add um to your regime. And personally, for me, this has been one of my biggest struggles, has been the mast cell. Because for me, it it it it presented as hives all over my body. Chronic eutaria. Yeah. Okay, so it was a dermatologist who helped me get on top of it. Um, but yes, I needed a lot of medication and injections and all sorts of stuff, but it's under control now. But it's very interesting. We don't know which is first, which is second, what causes what. We're still sort of pulling that apart. But it gives us a positive way that in the future, if they can work out these pathways, then there could be a way that they could make medications to help treat them. Yeah.

SPEAKER_06 21:49

Um, EDS and HSD. How do you get diagnosed for LSD and loss? Like what's that what's that look like? So is is HSD just purely based on HD?

SPEAKER_01 22:00

HSD is basically that that the biton and then the musculoskeletal factors in the absence of all other problems. So as a physio, we can give a provisional or a clinical diagnosis. But as we can't, you know, get people to do bloods and check for other issues, the doctors have to confirm it. Okay. HEDS, hypermobile L as Dan loss, when we originally, and I was at the meeting in New York in 2015, 16 when we were trying to, you know, work out what to do, they decided to pull a group of people separate out of the criteria. Before then, it was all the same.

SPEAKER_00 22:37

Right.

SPEAKER_01 22:37

They're trying to pull pull this out and they for research purposes. So they wanted to get the, they wanted to find the gene. So they get it got another set of criteria that you can find on the Ellis Dallas Society. And some of the things on there include the Biton, but also do you have a first degree relative with this? So a, you know, a mother, a sister, or a child. Okay. And then there's also, as well as the pain questions, there's also a series of um, you know, connective tissue signs. So um hernia, some some mild cardiac issues, um, and you know, stretch marks and a few other things like that. So you have to sort of get A, B, and C dealt with, and then there's uh exclusion of all other um things. So it usually takes a rheumatologist or a geneticist to do the diagnosis, but unfortunately, because this is such a common problem, finding those people who are anyone who starts to know about these things becomes um very overwhelmed with people wanting help. Yeah. Yeah. So, you know, I've done a lot of teaching. I I've currently started the hypermobility project to teach clinicians um how to deal with this in clinical practice. So rather than just looking at the research, trying to translate to how you treat that day-to-day in your practice.

SPEAKER_00 23:58

Yeah.

SPEAKER_01 23:58

And part of my first module, as well as diagnosis, is about ethics and around, you know, should we be diagnosing people with this and and and what does that mean to people? And um, how do we uh give people this diagnosis but give them enough education that is actually helpful? Um, because um diagnosis without education can be problematic. Okay, but that doesn't mean we should ignore it either. So, yeah, so that's really part of what the hypermobility project's about, trying to get people diagnosed earlier and also not just diagnosed, but managed. Yes. Okay. And educated. And educated. So I don't usually recommend my clients get that HEDS diagnosis unless they're quite um affected or really need it from their own point of view for their own um, you know, uh, what do they call it? So because they've been gaslit their whole life, yes, and they just want that real, you know, proof that there was something going on. Or if they need, say, um, they're having surgery or have multiple specialists, so everyone can sort of understand, oh, hypermobile is down loss, there tends to be this understanding that it's more of a thing than hate when than just hypermobility. So people are less likely to discount you. Right. Yes.

SPEAKER_05 25:15

Earlier, I interrupted. Yes. We were going to talk about the effect of then, particularly for women, because we've got now over the age of 18, we've got six more, or six women as to one men getting diagnosed or having the symptoms of hypermobility. Drove pregnancy into the picture. We were going to go down that road. What does that mean and what does that look like for women?

SPEAKER_01 25:38

Oh, it's so exciting, isn't it? Pregnancy. We love this one. So it can be good or it can be not so good. So I always say to people, we don't really know how the hypermobile person's going to react to pregnancy. If m if your pain is more the the joint stiffness and gripping from um those muscles that are overactive, often those pains feel a lot better.

SPEAKER_05 26:02

Is that because of relaxing?

SPEAKER_01 26:04

Because of the relaxing, yeah, it helps let some tension go.

SPEAKER_06 26:07

It's mine. Similar to back pain in pregnancy. I think it's more of the stiffness that they've had pre-relatency. Yes.

SPEAKER_01 26:15

So I was writing about my neck when I was pregnant. My neck was fine. I started to get some pelvic instability, like through my SIJs and my pubic symphysis. But I also found between my first pregnancy and my second pregnancy, when I was getting appropriate management for my pelvis when I was working somewhere that knew a lot more about hips and pelvis, the problems that I encountered when I had my second pregnancy were heaps less because I knew what to do.

SPEAKER_05 26:41

And because you'd been working on it and I've been working on it.

SPEAKER_01 26:44

And I built up my muscles. And that's the biggest problem I have in this group is that mums do not rehab themselves after they give birth when you would re- you would rehab yourself after a sprained ankle, but they don't have time to care themselves and they don't come in because they're looking after their loved ones. Okay, and that's the biggest problem we have is lack of rehab post post-birth. And so then I don't usually see them until you know a few years later, or I see them when the kids start presenting and I start talking them through what's happening with their six-year-old, and then they're there going, Oh my god. I've had I've had mums and daughters in the room, and the daughters said, Yeah, I have to pee every 20 minutes. And the mum's saying, Don't tell her that. That's completely normal.

SPEAKER_03 27:32

Because mum's been doing it her whole life, right?

SPEAKER_01 27:35

Yeah, and grandma. And I'm like, actually, it's not. And they're like, What? What do you mean? Is there is a genetic link with this? Yes, yes, definitely. Um, so we know that there seems to be some sort of hereditary, you know, uh autosomal dominant, you know, um thing going on, although they have spent a lot of money with the hedge study trying to find the gene and they can't find a primary gene. So we're thinking at this stage it's a combination of genes that are coming together, and that could be perhaps explaining some people's severity versus others. So it's gonna be a polygenetic syndrome, not a monogenetic.

unknown 28:13

Yeah, wow.

SPEAKER_06 28:14

It's too complicated a little bit.

SPEAKER_01 28:16

That just got a bit complicated, isn't it? So if we just go back to the pregnancy, so I think hypermobility is more likely to present at times when you're having a change in load, whether that's a change in physical load or hormonal load. Okay. So pregnancy, we've got the hormone changes, and we've also got those physical changes of having to carry your baby. Okay. Um, so we talked about the teenage girls.

SPEAKER_04 28:40

Yeah.

SPEAKER_01 28:41

We talked about around the pregnancy time.

SPEAKER_04 28:43

Yeah.

SPEAKER_01 28:43

And then we have that time around perimenopause and then people. Yeah. So so we we we often see problems, often in people who've had no symptomaticness with their hypermobility, or if they did, they had enough coping strategies to keep going, hit the wall at that time. And also had enough estrogen to keep going. Yeah. And had enough estrogen. Yeah, absolutely. Yeah. And I see a a certain small population of women who deny having any symptoms at all, and then have hit the wall really hard.

SPEAKER_00 29:21

Yeah.

SPEAKER_01 29:22

But I often also see a personality type coming through of that type A push-through, look after everyone else, and never stop. And so then when the music stops, the body just it keeps the score, right? So, yeah. So I've been preparing myself for menopause for years. Okay. It's been a big fear of mine because I've seen it repeatedly. So I've been trying to get my bloods in order and my thyroid under control and my sugar under control, and I consistently exercise and and you know, do my pots and have my meds. And I actually I actually cope really quite well in my little bubble with all my coping strategies. Yeah. Yeah. But take me out of my bubble, things can go go haywire fairly quickly.

SPEAKER_05 30:07

Yeah, for women listening today, this must be really quite powerful for them. Because I in practi in my practice, I've come across a number of women who, exactly like you just described, Sharon, they've been coping fine, and then all of a sudden, estrogen drops and they're in all sorts of trouble. And you you know about this. This is your jam, and yet you're still worried about it. So it's a it is a real thing, and and real symptoms present. So what can what can people do to help? Like what what are the best strategies?

SPEAKER_01 30:37

Well, I suppose a lot of the problems we find with estrogen dropping is is tendinopathy. I think I think that's the big problem. That's what we're doing. Yeah, right. So tendinopathy is that that pain in the in the tendon. Um, and the common places would be the side of your hip. So pain when you're lying on your side, uh shoulder, it's often called shoulder bersitis. Okay, um, and then um planifascia, so the foot. So they'd probably be the big three.

SPEAKER_00 31:03

Yeah.

SPEAKER_01 31:03

Um, and then because of those pains, people start moving differently, they deload areas or start limping, and then if you're hypermobile, once you start to get asymmetrical, all sorts of things start to happen. And on top of that, because of all that pain, you stop exercising, which is the worst thing, right? Yes. But you've got to do the right sort of exercise. So often it's the old I'm hitting perimenopause, I'm putting on some weight, I'm gonna start power walking up a hill that sometimes starts this off for everyone. So I think it's about trying to, you can't not have been exercising for a long time and then suddenly decide to start. It's about building things up gradually. And and I think that that's the hard part because we've been, especially now with socials and everything, we've sort of been told that there's quick fixes. And there really isn't. Like if you've taken 10 years to get down that hole, it might take you a couple of years to crawl out. Yeah. And so for me, that's not necessarily like great. If people can come see us every fortnight and we can speed that up, great. But if they can't, I have patients who who may come in every three months, get their home program, and then they consistently go do it. Okay. Yeah. And then come back to sort out any issues and then continue. But it has to be without the whole push-through pain, you have to listen to your body and you have to be very careful on who you listen to. Yeah. Okay.

SPEAKER_05 32:28

I love that quote, and I know you two girls know it because we used it at the practice, but that our bodies are able to adapt to whatever load we apply to it as long as that load is not too much that our body can adapt to in any one given amount of time. So it's that whole concept of that slow, incremental, and progressive change and increase, and not over days, but as in over weeks, over months, is take it slowly.

SPEAKER_06 32:55

And tune into your body. Yeah, listen, listen to it.

SPEAKER_01 32:58

It's gonna tell you, it's gonna tell me something. And just you could you can do it once doesn't mean you can do it 20 times. Exactly. So so I often see when I was talking about this this DOMS and this this things adding up.

SPEAKER_05 33:10

Yeah.

SPEAKER_01 33:10

So it might be, okay, yes, I did the Rage Clean and Michael Jackson, but I might have done that maybe three days after getting back from a trip from America, and then and then maybe spent um 14 hours at a computer the next day trying to get my clawed to work. And then maybe went for a walk in the dark on uneven ground. Yeah, you know, like it's it's it's the it's the cumulative load, right? And so it might not be I lifted a heavy thing and that did it. Oh, you know, it might it's that grumble that you go, oh, I did it slow. I did 10 minutes. Oh, I'm gonna do 14 kilometers, yeah, which seems to be the next decision. Yeah, and then that maybe works. So then I'm gonna do a half marathon and all of a sudden you're in trouble. So I think it's just oh, pointing at me. I think it's just what what level can you start at? And I think that's where your health professional, you know, someone who's working in in women's health, yeah, you know, an exercise physiologist or a physiotherapist. I always say to people, like, sure, you can come to not just Benny, but we do have a significant wait list.

SPEAKER_00 34:18

Yeah.

SPEAKER_01 34:19

So I always say to people, okay, so you can look on that Alice Downless um thing, but I always say, look at your local physios and see who has a who has a Pilates rehab gym at their practice. Yeah. Ask the receptionists, is there someone there who's used to working with the elderly or people post-surgical who who's going to be patient with me and won't mind if it takes a bit more time. They you can ask if they have anyone aware of hypermobility. Just because they say yes, that doesn't necessarily mean they do. But you just need someone patient who's willing to deal with your silliness of your body. You know, the number of things over the years that have happened to me that if I wasn't a physio, I would just go, that's impossible. That doing that would make that hurt there. Yeah, there's no real reason from a biomechanical point of view, and yet it still happens.

SPEAKER_00 35:08

Yeah.

SPEAKER_01 35:08

So there's so many things we don't we don't understand. Yeah.

SPEAKER_06 35:12

It's just being patient. That's such a great advice, like just having someone that's patient because that's like it as a clinician, it's an easy thing to do. Um, sometimes easily forgotten for some, but it's just like really lovely advice, I think. So but also the resources on the not just spendy and the hypermobility project page for both so the clinicians on the hypermobility page um project page, and then more for general public on not just spendy pages are incredible. So I think if anyone is suspicious of hypermobility in yourself or loved ones, please check those sites out. We'll link to them.

SPEAKER_01 35:48

Yeah, and we have links on both sites, just to other sites that have interesting information. Our blogs cover a lot of these topics, and um hypermobility project. Um, if you sign up there, you can get a free resource, which is a collaboration with Dr. Alan Harkin from the Ellis Downland Society Medical Board. Um, and it's a red flag checklist. So people are often worried that it's something other than hypermobility, spectrum disorder, or some other condition that could be more severe in the connective tissue family. And this is uh just a resource that you could share with your doctor just to go through are there are there any risk factors here that would indicate we need to do further testing? Okay, and then um we were talking earlier about um perioperative management and and how even something simple as having a colonoscopy or even a my um tooth getting your wisdom teeth out and things like that, um, how hypermobile people often react funny to surgery, okay, and how a few simple changes um can make a big difference. I remember when I had my second cesarean, I told the doctor last time what happened, and I was hypermobile, and he said, Oh, okay, we'll just load you up with an extra liter of saline before your surgery, and it made the world of difference. We know that hypermobiles don't take local anaesthetic as well. So sometimes they need more with dental procedures because it seems to just um diffuse out in the tissues and things like that. So that so I've put together with Dr. Jason Lamb, who's the dance doctor down in Melbourne, and um Bianca Comfort, who's a psychologist interested in this area, we've put together a little um best practice paper on perioperative management.

SPEAKER_07 37:32

So good.

SPEAKER_01 37:33

And that's something that you can print off of the Not Just Bendy blog or the um or off the resource list on um hypermeability project and you can you can give it to your doctor. What's the worst thing they can do? Say no.

SPEAKER_05 37:45

Exactly. I mean, even I think the thing that fascinated me was even just looking at the position of your head on the table or the on the on an operating table if you were going in for surgery about how to best position your head if you have Yeah.

SPEAKER_01 37:58

Yeah, if you've got if you've got hypermobility and you've got neck issues, you know, having your head bent back into extension for prolonged periods of time, it won't affect the surgery, but it might affect how you feel after. And even things like just asking if you could position yourself on the bed yourself rather than being dragged across when you were still conscious, yeah, could help support your joints. Just things like that can make can make a big difference to your outcome. And I think we're just trying to prevent as many problems as we can. We're not trying to scare everyone, but just deal with it. Let's not let's not hide behind the idea that we don't want to talk about it or don't want to diagnose it because that will make people scared. Yeah, we need to talk about it just the way diabetes is really common, but we still educate and diagnose it and treat it. Yeah, just because hypermobility is very common doesn't mean we should just completely ignore it. No people deserve management, best practice.

SPEAKER_05 38:57

Yeah, absolutely. Because it's all at the end of the day, it's all about quality of life. This is a great life to live. We want to live it well. Yeah, and and with minimal pain, minimal hives, minimal, minimal whatever else. Being able to eat. Can I ask a question on that quickly? I know that was a good wrap-up, but I just want to go back for one second and ask a question. If you exercise more, so if you're in general doing better with your muscles and and your hypermobility in general, does that have a flow-on effect? I know it will with the pots, but what about the MCAS? Does it affect the bigger? Yeah, we don't know.

SPEAKER_01 39:29

Yeah, we don't know, but it could. Yeah. So certainly, certainly there's there's there's bridges between the circulatory system and the musculoskeletal system. Okay, and things are a lot more complex than we know. So, you know, there's a myodural bridge where the brain joins on to the neck, okay, where the juror from the brain joins on. We've got um the lymphatic system, okay. So I generally find if we can get the lymphatic system working well, that can everything helps. So I always say to people, it's 5% of this and 5% of that and 5% of that, and we put it together and then we're 40% better.

SPEAKER_00 40:02

Yeah.

SPEAKER_01 40:03

So there's no one thing that's going to be the cure all for everyone. It's about getting your bloods done and getting a doctor to have a look at it and not just go, they're all in the reference range. But why is this one point off being out of the reference range? Like trying to try to think of it in a little bit more of an integrative way. So if you go to the musculoskeletal GPs or the integrative GPs or naturopaths that that look at these things, you might get a bit of a different picture of what's coming rather than, oh, you've already got this. Yeah. Okay. Does that make sense? Oh, totally. Yeah. Yeah. And so then, and like I was saying before, find that physio or EP or personal trainer, whoever who listens to you.

SPEAKER_00 40:46

Yeah.

SPEAKER_01 40:46

And then it's often good to have another person or the same person if they have the skills, who knows how to undo your injuries when they happen. Yeah. Who knows how to help you undo the tension. And that could be a Cairo or an osteo or or you know, your beauty therapist. I don't really care as long as what they're doing is is helpful at settling things down so that you can get back to exercising again. Yeah. Does that make sense?

SPEAKER_05 41:09

Because that seems to be the end game, doesn't it? Yes, the more we can get you to exercise, the better life will be.

SPEAKER_01 41:14

Absolutely. And and and finding a way to move that you love. Yes. Yes, I've got one person who can't won't do an exercise I tell them to do, but they love ice skating. So that so I'm like, ice skate, and here's the exercise I'm gonna make all the home program about how to make ice skating happen. Yeah. Or better. Yeah. I I constantly say that to patients.

SPEAKER_06 41:35

I'm like, just if you're not, you have to love it. Yeah. Otherwise you won't stick with it.

SPEAKER_01 41:39

Yeah. The best exercise you can do is the one you love. Yeah, absolutely. And the one that doesn't hurt.

SPEAKER_05 41:45

And that you haven't loaded up too much and overdoing it.

SPEAKER_03 41:48

And yeah, and all the other caveats, but oh Sharon, that was amazing. Great. I could sit and talk to you all day. This is famous.

SPEAKER_01 42:00

I really enjoyed it just just having the the healthy banter.

SPEAKER_06 42:05

Well, you're welcome back anytime to have a healthy banter.

SPEAKER_04 42:08

You know, we're gonna you I did put that in the text the other day. Yes. And Sharon, it sounds like you want to be a friend of the show.

SPEAKER_01 42:14

Yeah, it's okay. I'm all than happy. I could talk underwater with a mouthful of marbles about hypermobility, and I have been for about 17 years, and I'm gonna keep going. Good. We need you to. It's really important. Yeah, for sure. Thanks so much for joining us. It's a pleasure. Thank you so much.

SPEAKER_06 42:34

And that finishes our discussion with Sharon Hennessy, the queen of hypermobility.

SPEAKER_04 42:40

Ugh.

SPEAKER_06 42:40

I have learnt so much today. It was such a glorious discussion. Sharon's taught me so much over the years about this area. Um, but today I just uh it was like learning a thousand new things.

SPEAKER_05 42:52

We're so lucky to have somebody who's not just passionate about it, but just she's the best advocate for people with hypermobility. She's a great educator and she knows her stuff. She literally knows her. And she knows it.

SPEAKER_06 43:06

Yes. So for anyone out there that is thinking that they might have a bit of hypermobility or thinking one of their loved ones might, please check out the websites that we will link to. And if you're in Brisbane and you can somehow manage to get an appointment, please go and see NotJust Bendy.

SPEAKER_05 43:22

Yeah, they offer both in-clinic and telehealth appointments. So there's there's a bit of amen in there, even if you're not quite within Brisbane, you can still access their services. Totally.

SPEAKER_06 43:31

Yeah.

SPEAKER_05 43:32

And totally worth it. Absolutely.

SPEAKER_06 43:34

See you next one. See you for the next one.

SPEAKER_03 43:37

And that's a wrap for today's episode of Healthy Banter. We hope you're leaving with something useful and maybe something worth sharing with a friend, because that's what we're all about. Women supporting women, one honest chat at a time. If you loved hanging out with us, make sure to share, follow, or subscribe on Instagram, YouTube, Spotify, or just head to healthybanner.com.au so you never miss an episode.

SPEAKER_05 44:01

Take the advice that helps, teach the guilt, and keep cheering for yourself. We'll see you next week for more stories, more science, and even more banter. Healthy Bander is hosted, produced, and edited by Megan Jules. Our main music theme is composed by Ada Akkabal. Healthy Bander is not a licensed health service. It is not a substitute for professional health advice, treatment, or assessment. The advice given in this episode is general in nature, but if you are in need of individual advice or consultation, please see a healthcare professional. If you are struggling, call Lifeline on 133114.