Breaking Misconceptions of Hypermobility & EDS with Katie Goss

Andrea Moore [00:00:00]:

All right. Welcome, Katie. I am so excited to have you on this podcast.

Katie Goss [00:00:05]:

Thank you so much.

Andrea Moore [00:00:06]:

Yes. Why don't you start by telling people a little bit about yourself and how you got to where you are today?

Katie Goss [00:00:13]:

Yeah, sure. So my background is actually in critical care nursing, and I went to school for that because I have always been fascinated just with the human body and anatomy and physiology and pathophys and just really passionate about helping people. I come from a long line of medical professionals in my family, so I was kind of destined to do that, got into healthcare and pretty quickly got pretty frustrated with the system. As most people who have worked in healthcare for any amount of time know, it's really tough to actually help people, specifically with chronic conditions, like for acute care stuff. Awesome. And that part of it was very rewarding. But what was hard was seeing people who were chronically ill who just would keep coming back to the same unit with the same issues and the budget cuts and not being able to educate them. And it was hard to feel really good about the care that you were giving and at the same time, you didn't have the resources or the time to give the care that they deserve. So I ended up leaving nursing, stayed home with my kids when they were little so that I could nurse them, and then I had some very significant pelvic floor issues after giving birth. And that was ultimately what led me to being diagnosed with a connective tissue disorder called hypermobile Eller Stanley syndrome. And I went down a long rabbit hole of learning all kinds of different forms of movement and getting certified and became a Pilates instructor and got involved with my first online business. Kind of helping people with chronic pain and then ended up starting wealth and just helping people with chronic pain and hypermobility to get back to doing all the things that they love.

Andrea Moore [00:02:10]:

That's so amazing. What a journey.

Katie Goss [00:02:12]:

It was a very sure I'm sure.

Andrea Moore [00:02:14]:

There are so many more details and components to that, but yeah, and I'm so curious before because you obviously then had like, a pretty late diagnosis in terms of and I think this is so common that people do not get diagnosed until a lot later on. So I'm curious if you had signs before that or if it was a surprise to receive that.

Katie Goss [00:02:36]:

Yeah, I definitely did have signs before, and it was a surprise when I started learning about it. By the time I was diagnosed, I had done quite a bit of my own education on it. So I wasn't surprised when I actually got the diagnosis, but I was surprised there were definitely light bulb moments as I was reading about Eds and things were suddenly making sense from, I mean, childhood, even infancy. When I was born, they just called it like floppy baby. I couldn't hold my head up for a long time, wasn't meeting milestones. They took me to Neurologists and they did genetic testing for the things they knew how to test for at the time. I mean, this was nice. They didn't know what they know now about connected tissue disorders, which that is sort of a red flag now. So we are improving in terms of what we know and identifying hypermobility earlier. But there's a long way to go still with that, for sure. So, yeah, a lot of chronic pain even at a young age, like laying in bed and kind of getting brushed off as growing pains, but laying in bed and just not being able to sleep because just everything hurt. My legs would hurt, my back would hurt, and can remember that I felt different because my friends didn't have that. None of my friends had to lay on the floor and roll back and forth because their back was hurting. Or lots of random joint injuries that were imaging. Didn't show anything and couldn't really figure it out. Put me in a sling for a while, or a boot. Just a lot of unexplained injuries that took a long time to heal, like longer than you would expect. There were quite a few things. I've always had very low blood pressure, some kind of orthostatic intolerance. So standing up, getting dizzy and yeah, just a lot of stuff. A lot of the nervous system kind of overactive fight or flight disauthanomia a lot of the co occurring things that go with hypermobility. So, yeah, a lot of light bulb moments where things made sense over the years, for sure.

Andrea Moore [00:04:51]:

And then for listeners who might not know what Eds is and then also separating it out from like benign hypermobility because I think it makes sense, like hypermobility goes with Eds, but you can have benign hypermobility and not have Eds.

Katie Goss [00:05:08]:

Yeah, and it's confusing because they have changed the terminology every so many years, the terminology all gets changed, which makes it kind of confusing. So benign joint hypermobility is a term that isn't used as much anymore. But basically we think of hypermobility as a spectrum. And hypermobility for anyone who doesn't know is really just a larger range of motion in your joints than what we consider normal or what is average. Basically, for some people, that might mean all of their joints. For some people, that might mean just the peripheral, the little joints, fingers, toes, ankles, wrists. You can have it in just select joints. Sometimes it might be the result of injuries. Like if you're a soccer player, you've rolled the same ankle a bunch of times, maybe your ankle is hypermobile now because you have some laxity there, but the rest of your joints are okay. So there's generalized hypermobility is when you have a good amount of joints that are hypermobile. And then with that, there's a spectrum. And just generalized joint hypermobility might mean your joints are hypermobile. You're flexible, you can do like cool yoga poses and stuff without really having to practice, but you don't have any other issues from it. You're not having joint issues or pain or fatigue or anything else. And then there is hypermobility spectrum disorder, which means you're hypermobile, you have some pain, some other issues, but you do not meet the very specific diagnostic criteria for hypermobile or any form of Eds. And there's quite a bit of debate actually on this. But really the diagnostic criteria for hypermobile Eds was really just to try to narrow down the people that qualified so that they could do more genetic testing and do more research. But in terms of treatment, hypermobility spectrum disorders and HEDS should be treated the same. There's kind of this perception that if you have HDS, you're worse off than someone who just has HSD. And that's actually not true. People with HSD can have a lot of systemic issues and hypermobility is the result of some differences in the makeup of our connective tissues. And so we have connective tissues. We think about the joints a lot, but we actually have connective tissues in pretty much every system of our body. Our teeth, our blood plasma, bones, our cardiovascular system. So it really can have a much broader impact on someone than you'd realize. And that's something that can be hard for people because even a lot of doctors are like, oh, well, that just means your joints are bendy, it's fine.

Andrea Moore [00:08:11]:

Totally, yes. And sorry, and clarify, what does HSD stand for?

Katie Goss [00:08:16]:

That's hypermobility spectrum disorder.

Andrea Moore [00:08:21]:

Thank you for that. It's so funny because I'm like, oh, I feel like I just dated myself of I totally have used benign joint hypermobility. I didn't realize that was an old term because that's what I use. I am not in the clinic anymore and I learned that back when I started. And I'm like, I guess it's been like a decade and a lot of.

Katie Goss [00:08:41]:

People do like I've heard geneticists still use that term and stuff great, but I think some people feel like the benign part is sort of dismissing the issues. Yeah, I think it depends whether you have a medical background, you understand kind of the term benign versus if you don't, it can feel like it's dismissive of your other issue.

Andrea Moore [00:09:06]:

Oh, that's so true. No, that's so true. That makes so much sense. And I am glad to be updated on this because I worked with a lot of hypermobility early on in my career. But that was like, I mean, I graduated in 2011 and so for the first clinic I was at, for the first four years, I saw tons of hypermobility and Eds. And then since then I really haven't directly worked in the clinic with it. So I'm like I haven't updated myself. So this is great. Yeah, go ahead.

Katie Goss [00:09:34]:

It's interesting, we talk about the prevalence of it because the prevalence is usually referred to in terms of general population, but like you're saying, when it comes to physical therapists or physicians in the clinic, you're probably actually seeing a much higher prevalence because these people typically just have more issues, more pain, more complaints, more injuries. So that part gets a little confusing, too.

Andrea Moore [00:09:56]:

It does. And I worked at a clinic that was like it was where people went when they failed other physical therapy, right? It's like we were known for that. So it was like, what was so funny was that was my first clinic job, right? And we barely learned anything about hypermobility in school. So I was lucky enough to the knowledge that I got, was we worked with a ton of dancers, and so a lot of my experience was with people who were very strong and capable, but also got injured quite a bit or had pain. And so it wasn't until a little bit later on that I realized that there was then a lot of misconceptions, which we'll get into in a second. But then when I went into my next clinic, which was literally like a workers comp clinic that saw all, like, manual laborers, because before I was like, of course the sacrum moves. How can people say it doesn't move? Like, you can literally feel it. And then I was like, oh, this is why people say it doesn't move, because I haven't been touching the general population's body where it is so stiff. Okay, I see the debate now, everybody's. Right? It just depends on whose body you're touching.

Katie Goss [00:11:04]:

Yeah, exactly. And I think that's so tough. There's always so much nuance to any of those statements. I know exactly what you're talking about with that whole debate about yes, those.

Andrea Moore [00:11:18]:

Studies are all done on military dudes. Of course you're not feeling the sacrum moving. Go play with my ballet. Answer sacred. You'll have a very different opinion.

Katie Goss [00:11:27]:

Yeah, the hypermobile folks do tend to be drawn to yoga and dance gymnastics because that ability is very much rewarded in those places.

Andrea Moore [00:11:40]:

100%. Yeah. So let's talk about some misconceptions with it first. Like, what are the biggest misconceptions you come across?

Katie Goss [00:11:50]:

I mean, there are a few. One, that it gets worse with age. It can for some people, but that's not directly connected to aging. I think, in my opinion, most often, that's more coordinated with deconditioning. And then that brings me to the one that I really want to scream from the rooftops about is the messaging that we are broken, weak, fragile, that we shouldn't lift heavy weights, that we need to be super careful, or even being told, like, not to strength train. A lot of people are told that. I was told that after I was diagnosed. And I think all professions have their place and their thing that they're really good at. And geneticists are awesome at diagnosing. Probably not the best place to get prescription in terms of movement. Right, let's save that.

Andrea Moore [00:12:49]:

You can say it on here, we're good.

Katie Goss [00:12:51]:

Let's save that for the people that do that.

Andrea Moore [00:12:53]:

Exactly.

Katie Goss [00:12:54]:

To me when I was told that, because at the time I was into weightlifting, I have been into lifting weights since high school. And it was something that the first time I went in the weight room, I had no idea what I was doing. But I knew I felt better afterward. And so I was just drawn to lifting weights. Over the years, it's been the thing that I come back to and I know that if I go more than like three days without some type of strength or resistance training, I just start to hurt again. And so it's just been something that's been easy for me to stick to because intuitively I feel better when I do it. So being told that I shouldn't do that was like, that doesn't make any sense to me. And if your joints are more lax and loose because of your connective tissues, what else supports our joints and holds them together other than our connective tissues? It's like our muscles. So why would we not strengthen those? Like, it just made it made no sense to me. And unfortunately, it still is advice that is very rampantly given out and something that we really have to do a lot of educating on our hypermobile folks. Not to say that they should all go jump into group exercise or CrossFit because there's a lot more attention that needs to be given to form and technique and progressions and more gradual loading, a lot of times starting them at a much easier regression. But when done in a safe way from someone who understands hypermobility, it is, in my opinion, hands down the most profound thing that you can access to make yourself feel and function better. There's no cure for hypermobility. There's no cure for Eds, but you can impact the way that you feel and function. And not even just we think about it again in terms of supporting the joints, but even those co occurring conditions, the disautonomia, the pots that a lot of people have, exercise actually helps all of that fluid circulation is going to help with your other symptoms too.

Andrea Moore [00:15:05]:

Yes, all of that. And I want to highlight what you said about the joints too. I don't know what you think about this analogy, but this is the analogy that I always used and still remember is like if you attach a slinky in a bedspring have you heard this one?

Katie Goss [00:15:20]:

No.

Andrea Moore [00:15:20]:

Okay, so it's like if you attach a slinky in a bed spring and you stretch it out, what stretches first? The slinky.

Katie Goss [00:15:27]:

Right?

Andrea Moore [00:15:28]:

Because the bedspring is like really rigid. So like, in a person's joint who does not have hypermobility, it's like the muscle that's the slinky and then eventually you keep stretching. Then you'll get into the ligament or the connective tissue. But in hypermobility, that's flipped. So if you're stretching, it's like you're stretching through all the connective tissue before you're ever able to stretch the muscle. Which means, again, it's like so somebody who is stretching a lot, doing a ton of yoga and end range of motion things and dancing and able to have that is just making their connective tissue more lax or just feeding into the laxity. Right? And so we need the muscle to come in and be able to support that even more. And the muscle can kind of take the job of the connective tissue when it's strengthened totally.

Katie Goss [00:16:25]:

And we see that be such a vicious cycle. And one that I lived for a long time with my hamstrings. I used to say, my hamstrings are just so tight. And I truly had the sensation of tightness in my hamstrings. And I would stretch and I would feel some relief initially, and then it would come back just even more. I would feel tight. I would feel tight, stretch, feel tight, stretch, feel tight, and have pain, like, way up high at the hamstring connection. And it wasn't until I actually met he's my fiancee now, but I was working with him, and I said, I just cannot figure out this hamstring thing. They're so tight. And he put me through a couple of movements. He's like, your hamstrings are not like you have crazy range of motions. Stop stretching them. Let's strengthen. And that was such a game changer for me. I completely stopped stretching, didn't stretch them at all for like two months, and just got into strength work for the hamstring. And the pain completely went away. And from the stuff I've read, it's like people that are hypermobile also don't get the same proprioceptive feedback. So when we are stretching, just like you said, and it's the soft tissues that are providing that stretch, not the muscles, we don't feel it. Like, a normal person would feel that and be like, this doesn't feel right, or stop. And we don't feel that. But our nervous systems still detect that overstretching. And so then it goes into like a guarding mode and we're just, like, clueless about what's happening. We just feel like, oh my gosh, I just feel so tight around this joint. That's another thing that we do a lot of educating with people, is like, if there's a spot that has felt tight and you keep stretching it and it's not getting better, let's stop. Let's work on strengthening it and lay off the stretching for a while. And it usually is just super helpful for people.

Andrea Moore [00:18:11]:

Yeah, I used to have my dancers, I'm like, if it's because they'd be like, but I can oh, my gosh. They'd be like, so itchy to stretch. And so I'd be like, you can use a lacrosse ball on the muscle belly, and then you're actually targeting the muscle. Then you know you're getting the muscle because there can I mean, I definitely dry needles somebody with hypermobility who has tons of range of motion because they have a trigger point in their muscle belly, and they can feel that, and it's uncomfortable. But you got to target it directly because you just cannot get to it by stretching.

Katie Goss [00:18:42]:

Yeah, absolutely. The massage definitely is super helpful for that.

Andrea Moore [00:18:49]:

Yeah. And so I'm so curious too. I love I just want to again, highlight what you said about the strengthening of the hamstrings. That helps. And I think what is really common and I'm sure this is what you end up maybe end up I'm making an assumption of what you end up seeing is that when there's somebody who has been told, hey, don't strength train, you're fragile, you're weak. And now they've gone a decade or multiple decades. They are now at a place, like you said, where it's like, to get into strengthening is really challenging, and that needs to be really acknowledged because you set it up. Like, you don't just jump into a group program because the queuing that is needed, this type of strengthening, how you get there is going to look very different than your general population.

Katie Goss [00:19:39]:

Yeah, absolutely.

Andrea Moore [00:19:41]:

That is when go ahead.

Katie Goss [00:19:43]:

I was just going to say and the hypermobile folks are really good at achieving a position. You're in a group fitness class and you look around, you're like, oh, this is what we're doing. Okay. And you can achieve the position, but you're using totally different muscles than everyone else. Your ability to contort and look like other people is great, but you're feeling it and using totally different muscles and tissues in your body to achieve that.

Andrea Moore [00:20:08]:

Yes, that's where I'm like, was always it's like, what muscle are you feeling that in? What muscle are you feeling it? Oh, it's not supposed to be a mat muscle. I remember I had a guy who was hypermobile and he would strain his hamstring, like, legitimately it was a legitimate strain from doing pull ups. And I was like, that is one hell of a cup. But like, multiple times it would happen. And I'm like, because you're not using the right muscles. You are somehow managing to use your hamstring and a pull up, which I can't even wrap my head around, but it doesn't matter. Let's teach you what muscles you're supposed to use and where your lats actually are and how you feel them, because actually, I want to back up. You spoke to proprioception. Can you explain what Proprioception is?

Katie Goss [00:20:53]:

Yeah, it's just knowing where your body is in space, so understanding where your arm is, what it's doing, where your leg is, what it's doing. We actually did a reel on social media recently. The hypermobile girls walk like this, and it showed us, like, stubbing a toe rolling, an ankle, running into a door frame. There's a lot of that where you're just not really quite sure where you are. Like, you think you know where you are, but you're a little off. And so a lot of times, we encourage people to train, do a lot of training in front of a mirror, or if that's not an option, then record yourself and look. Because a lot of times, where you think you are or movement, you think that you're doing a really good job keeping your pelvis still. And then you look at yourself and you're like, it's just all over.

Andrea Moore [00:21:41]:

Yeah. Those with hypermobility are going to have a lot harder time with proprioception. The proprioception is literally less. And at the beginning, we're talking about how you strength train, and you notice if you miss just even a couple of days or if you go more than three days. And I'm curious, how much does it feel like any of that is just related to the proprioceptive input into your joints and that just feeding into that? Because I feel like that is another reason why strength training is so helpful. Is it helps with that proprioception?

Katie Goss [00:22:12]:

Yeah, I think it definitely does. I think I'm sure that that is definitely one factor. Yeah, for sure. I think it just helps with so many of the co occurring conditions and issues. GI issues are very prevalent, again, connected tissue in our GI tract. A lot of us have issues with GI motility, and movement is what helps get those parasals waves and get things moving through your GI tract. So just again, there's so many pieces to it. But movement helps all of them.

Andrea Moore [00:22:45]:

Yes. If somebody's listening and they're like, okay, I'm in this place where I've gone, yeah, 30 years without exercising. I'm in chronic pain, and anytime I try to do a movement, it feels like it flares me up. Is there hope for them? Absolutely.

Katie Goss [00:23:02]:

Yeah, there absolutely is. And a lot of times, I think a lot of times people think of strength training and you think of the CrossFit or the bodybuilding, and it might simply be isometric. I mean, a great example is the neck. So a lot of hypermobile folks have a lot of neck issues ranging. It can be all kinds of different reasons for it, instability or otherwise. But just starting them with just a neutral position and just providing their own resistance with a hand so they can go as gentle as they need to and just resisting the pressure that you're putting into your head from different sides is where we start people's neck. And just that in itself, a couple of weeks of doing that can be so profound for people. It can have such a massive impact on pain. And then people you think of strengthening the neck, and you think of, like, the iron neck contraption you don't need that super simple. And we really start in that way with the whole body, with simple but not easy. Like the basic stuff is not easy, especially for folks that are hypermobile when you're teaching them, which muscles to be using and really getting them cued into their posture and their alignment while they're doing these exercises. So yeah, I mean, nobody is too deconditioned to start working on this. There are progressions that anyone can do that can be graded to their level.

Andrea Moore [00:24:35]:

I love that. And I was telling Katie before we started that when I came across their account, I was at this place where I was like, oh my gosh, I feel like I need to start putting out more videos on exercise and how to queue properly because I just see it done wrongly all the time. Even when I was working in the clinic, like looking at Med Bridges exercise, which is like a home exercise program maker, and other ones, I'm like, why do they literally they have one job, which is to show people how to do exercise and they're doing it wrong. I would get so mad anyways. But then I came across Katie's account, wealth account, and I was like, oh my gosh, there are people in this world that queue and are showing it so beautifully. And I was like, okay, good. I don't want to do this, I don't have to do it and I don't want to do it, but they do it.

Katie Goss [00:25:28]:

Thank you for saying that. It is interesting, the number. I mean, we've both experienced this ourselves, going to PT and actually making you worse. And I think that's another piece to the puzzle for people who are hypermobile who are told to strengthen. A lot of times their physician may even send them to physical therapy. But if they end up working with a therapist who doesn't understand hypermobility I've had people do, like, joint distractions on me, which just that was before I didn't know that I was hypermobile at that point. And they didn't know, but they didn't know how to help me. And so it did make things worse. And I think so many of us that are hypermobile have had at least a handful of those experiences where you go and do the thing that you're supposed to do and then it makes you worse. And so understandably, people are scared and hesitant. That's like just another piece to the puzzle. And social media can be great for gathering information and there's also a lot of misinformation or information that isn't specific to the topic. So like, with that you're mentioning, some people will say people are over queuing exercises, it's making people scared to move. But that's not true when it comes to hypermobility where these people have so many more options of where to go with every joint.

Andrea Moore [00:26:53]:

Exactly.

Katie Goss [00:26:54]:

It's like you have to give that queuing because someone with normal connective tissue, any given joint, only has a few options of where to go. And when you throw hypermobility in the mix, your options just went exponential in terms of where that joint can move.

Andrea Moore [00:27:11]:

Totally. Yeah, that was something else I found when I switched clinics and all of a sudden I'm like with a quote unquote normal population. And I was like, oh my God, I talk so much. But I was like, oh, I don't need to be saying so much. But I was like I had to. And then every now and then get somebody who did have hypermobility. And I was like okay, I wasn't completely crazy for over queuing because they need it. And I want to speak to this because I think it's really important because I think in the chronic pain world there is so much emphasis which is where my emphasis is right on the mindset working with the nervous system and that is infinitely important. And if you're listening and you have hypermobility, chances are you also need specialized movement instruction. Not because you've done anything wrong or because you're broken or fragile. It's just because you need to learn how to feel your own body and where it is in space.

Katie Goss [00:28:10]:

Yes, absolutely. And the mindset work is also very needed. It's super impactful for everyone. But I think it is important for people who are hypermobile to also understand and recognize that some of our psychological symptoms often are misdiagnosed. So a lot of us have experienced anxiety feelings of panic attacks and have been diagnosed as such. And it can actually be disautonomia that's causing that. And that's another part where adequate hydration and the exercise can really help the disautonomia and can help those feelings of anxiety. So not only working on the nervous system through breath work and getting that parasympathetic nervous system more on board, but hypermobile folks just tend to reach that fight or flight point much easier and sometimes it has nothing to do with anything that we're thinking about. It can literally be our blood pressure went too low, our heart rate went too high, we stood up and our blood volume went to our lower extremities and isn't as fast at coming back up. So sometimes it gets a little tricky. And if you're doing the mindset work and you're still feeling like you're anxious or you're having these symptoms of anxiety, you're getting sweaty or shaky, then that's when really start to think about the movement and the strengthening part. Because that might be the missing piece that's going to push you over to get you where you want to be. Yeah.

Andrea Moore [00:29:48]:

And oh my gosh, this is so important. So important because that disautonomia. I'm wondering if you can help people even identify or give other I mean I think you kind of said it of like there's no thought, there's no trigger almost or maybe the trigger is a movement based one or you're getting up too quickly. Any other things that can help people maybe be like oh that's me, maybe it's not my thoughts.

Katie Goss [00:30:17]:

Yeah, I think the biggest thing is if you because the symptoms of anxiety are the same, whether it is because of a thought. Process or whether it's physiological or psychological meaning, whether it's coming from your body and your physiology or your mind and your thoughts, the way that it expresses itself is the same, which is what makes it hard. If you go to the doctor and you explain the symptoms, they're probably going to give you an SSRI medication or send you to a therapist. And that's for some people, that is accurate, and that's great. But if you've tried that and it's not helping you, and you've also tried a lot of the breath work and the things, and you're still having this kind of unexplained episodes of anxiety or even panic attacks, it may be disautonomia. And the way that I usually try to describe disautonomia in just, like, super simple terms is your nervous system is drunk. Basically, it's just not doing the job right. It's like your blood pressure goes low, so your nervous system will dump norepinephrine and things that will make your blood vessels constrict. Sorry, let me start that. Your blood pressure goes low. Your nervous system dumps some hormones, chemicals, and it overdoes it. It dumps way too much. And so now you're shaky, and your heart rate's way too high, and now your blood pressure is higher, and you feel crappy. And so then it's like, oh, we did too much. So then they dump something else, and then it goes way too low. And so it can be these swings of, like, you feel like you're having a panic attack, and then you're just exhausted, fatigued, feel like you can't keep your eyes open. Just these swings that some people even end up getting diagnosed as, like, bipolar or things like that. And it can actually just be this autonomy in your nervous system.

Andrea Moore [00:32:10]:

Yeah. Oh, this is huge. And so I'm curious, if somebody is listening, they're like, holy shit, this is me. What do they do next?

Katie Goss [00:32:19]:

Where do they go?

Andrea Moore [00:32:22]:

Primary care. Is this something that needs to be medicated? Is this something that can be managed through movement and exercise and hydration? Yeah.

Katie Goss [00:32:32]:

So you absolutely always bring it up with your physician. I will say that some physicians are not very knowledgeable about it or helpful. You can go through testing for disordermia tilt table testing that's usually performed by either a cardiologist who specializes in that or a neurologist who specializes in that. Some of the testing, though, you can really do yourself at home. Honestly, like, lay down. Like, you can Google this. You can lay down on the couch for it's, like, ten minutes. Don't move. You're not fidgeting. You're literally just laying there. You check your blood pressure, have someone help you. Then you're going to stand up. You're going to check it again. A lot of us have the wearable devices now that can help you watch that heart rate when you stand up, what does it do? How do you feel? And for most people, increasing hydration, but not just hydration. If you're drinking a lot more water, then you also need the salt with it, the sodium. So we use element packets. That's something that, for me, has been just so helpful. It's a brand that we like. I think they taste great. Dump them in your water. Drink it with your water. Drink more water than you used to. For some people, compression garments specifically for the lower extremities. So, like, compression stockings or hose or even, like, some of the tighter compressive yoga pants sometimes can be really good. And people also sometimes like the feedback in terms of proprioception from the compressive garments too, because it can kind of.

Andrea Moore [00:34:05]:

Help you feel where you're at.

Katie Goss [00:34:07]:

So, yeah, there's a lot that you can do on your own. And then the strength training and movement when the blood does pool in those lower extremities, if you think about your muscles, when they contract, they're literally squeezing the blood back up and getting it back up to your brain and heart where it needs to be to kind of calm things down.

Andrea Moore [00:34:27]:

Yes. Oh, my gosh. I'm like bringing back my physiology. If I remember correctly, right, the calf muscles do not have they are the pump. There's no pump in your lower body. It's literally the muscle contracting that pumps the blood back up, right? Is that right?

Katie Goss [00:34:43]:

You're testing me now. I know that it definitely helps.

Andrea Moore [00:34:47]:

We both pass that test at some point, right? What I want to bring here is just I think what's so common is that people get a diagnosis, right? Like, maybe so they go and get the tilt table test, or they're diagnosed with Pots, they're diagnosed with Eds, and then it's just like, well, that's just what I have. And it's like the bucket stops there, and it's like no, what you're saying is there's so much more that can be done and that you can get feeling so much better to manage it. Like you said, it's not curing it. It's managing it in a way that allows you to fully live your life and be strong and be functional and do the things you want to do.

Katie Goss [00:35:27]:

And it's really up to the individual, I guess, and what kind of life they want to live. There are medications that can increase your blood pressure and bring down your heart rate. And some people, if their Dysautonomia is very severe, they might need those medications. But I will say every medication comes with side effects. And one of the biggest problems I saw as a critical care nurse were patients that would come in with a grocery bag of medications, and it was like, oh, this one's from this specialist, and this one's from this one, and this one treats the side effects from this one. And it's like, when you're on ten different medications, how do you even know what's working and how you feel? And whether what you're feeling is just a side effect of a medication. I wish more people saw more of the value in the again, it's those simple things that are hard to get yourself to do, like the movement and the nutrition and the mindset work and the breath work. They're not pharmaceutical. They don't cost anything in a lot of cases, they're super accessible. And I think that they are highly underrated in how effective they can be for people.

Andrea Moore [00:36:45]:

Yeah. And not to mention they improve your quality of life so much more. Yes, absolutely. There are some people who need the medications or at least need it as a bridge or might need to be on them for life. I mean, it's everybody like you said, it's a spectrum. But you can still incorporate these things even if you're taking medication. And then you might need to make sure you're going back and getting them checked or dosages switched more often. But your overall quality of life goes up because being able to move your body through space is super important if you want to live a whole life.

Katie Goss [00:37:22]:

Yeah. Especially as you age. And it's like the older people who getting up out of a chair is tough. Or wiping themselves after they go to the bathroom. If you're losing the ability to do those things when you're in your third or fourth decade, what is that going to look like when you're 60 or 70?

Andrea Moore [00:37:42]:

Yeah.

Katie Goss [00:37:42]:

You got to think about your future, too. Even if how you feel in the present moment isn't enough to motivate you. You got to think about 20 years from now where you not prioritizing the strength training.

Andrea Moore [00:37:55]:

I think this is so important and it's like I don't want everyone to come across as like, fear mongering because that's not what I do. But it is. I think people don't realize the rate that muscle can atrophy when it's not used and it's just a physiological reality. And I mean, I'm grateful for being and I'm sure you have that exposure too, right, to people who it's like they can't shift themselves over in bed, they can't roll over, they can't get up from a chair because they are so weak. And it's never too late. I worked with all those people and you can get the strength back. It is much harder, though. It's much harder and it's much slower. It's never too late. And if just daily life activities are challenging for you now, the reality is it will only get harder. And it's a hard truth, I think, for some people to face. But the good news is that you can do something about it.

Katie Goss [00:38:54]:

Yes, absolutely.

Andrea Moore [00:38:55]:

And so why don't you share what people like, what you offer? Because, again, you have brilliant, amazing queuing and exercises and programs. I don't know all the details of them, but from what I see follow them on Instagram for sure.

Katie Goss [00:39:09]:

Yeah. So our page is wealth, and it's spelled W health. And that name came from the idea that your health truly is the most accurate measure of your wealth. Just your health is your wealth, essentially. So, yeah, we put out a lot of free content across all the social media platforms and then our programs. We do a lot of these body paintings where we have a medical illustrator that comes and she paints on our bodies and the muscles and the joints and the tissues and it really helps people visualize. Again, what we're talking about earlier, where here's where you should be feeling it. For a lot of people, they don't know the anatomy, so if they can see it in a video and you're like, this is where you should feel it, they're like, Got it. So we do that in our program videos, most of them anywhere where we could we did the body painting and then it's again, just a lot of the queuing and the emphasis on technique and there's a lot of different variations for every movement. So if you're like, that's not accessible for me or that doesn't feel good, there's an easier version for you to work up to the other version with. We take a very comprehensive and holistic approach. So there is a large emphasis on strengthening and movement, but we do also do a lot of breath work mindset. We look at your nutrition, we look at your sleep quality and what we can do to improve sleep hygiene. We look at how you're coping with stress and how well you're communicating with the people that are close to you. All of these things impact our pain and our stress and everything is intertwined and interconnected. And I really felt like when I was working in clinical work, that that was one of the biggest things, that the medical system just doesn't do that well. Everything's very siloed. If you have an issue with one thing, if your nutrition is an issue, you go to a dietitian. If you're stressed out, you're going to go see a psychiatrist or a psychologist. So everything's so separated and there's so much crossover that isn't appreciated when you're going to all these different disciplines. And so our programming just really taps into everything. We kind of are throwing everything in the kitchen sink at it. But the more that we learned about the biopsychosocial model of pain, we were like, oh, there's a name for this thing that we've been doing. We knew it worked, but we sort of just felt like, why not tackle all of the things that seem to make an impact for people? And then we learned more about it and we're like, oh, there's a name for it and this is why it works. So, yeah, everything's done online, which is great because some countries, they don't have accessibility to therapy or it can be really challenging, especially with hypermobility, for people to find therapists who understand it. So that's been one of the really great things with the hypermobility program is just that there are people from all over the world that enroll. We have a community. So just the conversations and the support and the stories in the community. Sometimes if you're in a really rough spot but you're able to observe someone else who was also in a really rough spot and you're able to see how far they've come, it can be really inspiring and it can really instill a lot of hope in people and they can start to picture what they could do. So that community is also something that's missing a lot of times with health care because of HIPAA. That's just kind of another added bonus, is people being able to get to know other people like them.

Andrea Moore [00:42:54]:

Oh, I think that's so huge. That's why I started a group program as well, because I think we could feel so alone on our journey, and then it makes you feel more if you're already feeling broken, right. It makes you feel even more broken of like, oh, my gosh, I'm the only one facing these challenges. I'm the only one. And it's like, no, you're not. That's super awesome. I feel like I was just going to ask another question. I totally just blanked on it. Oh, I know. Any, I guess, inspiring stories or things that you want to share or people that you think of who have done really well that can serve as an inspiration.

Katie Goss [00:43:36]:

Yeah, I mean, there are so many. Honestly, we've had people that have had a bunch of surgeries that have had failed surgeries, that have tried all kinds of different therapies and treatments. Most people, by the time they come to us, have done physical therapy. They've been to maybe chiropractor, acupuncturist, herbalists. They've usually tried a lot of things before they get to us. And people are understandably skeptical a lot of times. And so seeing that shift start to take place, and we see these updates in the community where people are like, oh, my gosh, I went for a walk with my kids, and I didn't have any pain. This is the first time that I've been able to do this. I wasn't crabby. It wasn't me that had to turn around and take us back home, or it's the mom that's like, I was finally able to throw my kid in the pool for the first time. He's been asking me to throw him in the pool, and I'm always like, no, your dad has to do it. Like, my neck. I can't lift you. I threw him in the pool, and I was okay. I was scared, and I was nervous, and I did it, and I was fine, and now I can throw him. And hearing that from people gets me. Like, I know when people are like, I can be a mom again to my kids. It's like, oh, it just never gets old.

Andrea Moore [00:44:51]:

Oh, my gosh, that's so good. That's so good. I'm thinking of this one woman too. That was one of my first she was literally my first evaluation that I had. I'm officially by myself as a physical therapist. And of course, it's like a 40 year history, and she has Eds and all these things. I was like, oh, my God. And when she came to me, it's like she, at the end of the day, could not walk up her stairs to go to bed. She would sleep on her couch because she couldn't make it upstairs, and she would fall. I think it was something like, at least every day, if not multiple times a day, because her joints, like, she would just roll her ankles and fall, and there was no strength. And I think by the time I left the clinic so I was working with her for four years, and at that point, we were actually just working solely as exercise based, and she hadn't had a fall in six months, and she was sleeping in her bed every night, and it was just, like, just so cool. Amazing.

Katie Goss [00:45:52]:

Yeah, it really is. Yeah, it's just awesome. And the education that goes along with it when people are understanding, because some people like that woman. A lot of times they end up in braces to help support the joints, which can be great if that helps you to be more mobile. But there should always be a goal of continuing to strengthen and get out of that brace. And I think that unfortunately, sometimes these people can be difficult and complex, and they're not receiving that education. And so it becomes sometimes this kind of downward. They rely on tools and other things which have their place and are awesome, but, like, there has to still be that strengthening component to it.

Andrea Moore [00:46:36]:

Yes. There's so much just short term in the medical field of, like, okay, brace this, which is, like you said, it has its place, but what's it going to mean in ten years if that doesn't shift or if you don't try to start strengthening to come out of it? Exactly. It's just so important, and I just respect what you guys do so much. I think it's amazing, and I feel like your reels are fantastic, and they're so educational. I think you guys are hilarious too, of, like, you just provide it in such a funny, entertaining way. I love it.

Katie Goss [00:47:09]:

We try to have fun with it.

Andrea Moore [00:47:10]:

Clearly, everyone, oh, I love it, I love it. I'm like, oh, that makes me want, like, a whole team around me to be fun with it's so cool. So, yes, everybody, I highly suggest you check out their account, check out their work, because you guys do an excellent job. And yeah, thank you so much for coming on and educating people. I think this is going to be such a helpful episode for so many out there who have just had unanswered questions.

Katie Goss [00:47:35]:

Thank you very much. Thank you for the opportunity there's one additional thing I'd like to add for anyone who is navigating this or think they're hypermobile, or you look it up and you're going to talk to your doctor about it, understanding and try to be patient with your medical providers. A lot of them literally got maybe one lecture on hypermobility or Eds. A lot of medical doctors, as a nurse, I don't remember learning anything about it. So sometimes it can be challenging to find help in the medical system with it. So just try to be patient, try to understand. It's likely that they want to help you. They just may not have the knowledge. So just be persistent.

Andrea Moore [00:48:20]:

Yes, okay. And thank you so much for bringing this up because you were obviously, as a critical care nurse, experience this all the time of, like, everybody I would say most doctors, most nurses, they have very good intentions. They want to help. But if you haven't received the education and if you have seven minutes with a patient, it's really challenging. And like I said, as a PT, I definitely never had it. If I was not fortunate enough to be at that clinic at first when I came across people with hypermobility, I would have been super confused as well. I just was lucky enough to have it basically ingrained in me from day one. It was like part of the curriculum of working in that clinic. We learned about it and we learned how to treat it, and it was just like, oh, okay, well, that was a total blind spot in school.

Katie Goss [00:49:07]:

What a great opportunity.

Andrea Moore [00:49:08]:

Yeah. And I think the big thing with talking to your providers, or if you're working with a physical therapist or some other practitioner, they may not have the capacity to learn about it, and that's okay. And some might actually be super willing to learn with you and to go out and do it. And not everyone's going to have the capacity to do it, and if not, that's okay, but look for somebody else, all right? It's just move on. Find the next person, call up clinics, ask, get clear on what I feel like a lot of clinics, I will say from having worked at clinics, I also feel like sometimes the front desk is trained to be like, oh, yeah, we're totally experts at that when they're not. So sorry for calling out clinics right now, but that kind of needs to stop. But it says, really talk to the PT of what have you seen? What is your approach? Because I do think there are and I would say also ask them what their philosophy is, because I do think there are people who work with hypermobility, but I still see that very fragile approach of, like, they work with it, but they work with it from this very fragile place.

Katie Goss [00:50:17]:

Yeah, I see it go like, yeah, I feel like it goes like this. Either they're super fragile to the point that you're not really accomplishing a lot, or they're just like, oh, they're just like everyone else. They have the same bodies everyone else does, and then people end up getting hurt and frustrated and just stopping.

Andrea Moore [00:50:35]:

Yeah.

Katie Goss [00:50:36]:

Find someone that's kind of in that middle ground of like, yes. You need approach, and you're super capable. Yeah.

Andrea Moore [00:50:43]:

Ask what the plan is. Ask like, hey, what's the outcome of this exercise? What should I expect? Just get curious. And be willing to learn for yourself too, because they might have some really good knowledge that they didn't share with you until you asked the question, and it's all of a sudden, oh, now I see where this fits into your big picture. Right. It's like, discuss the goals. Is this moving towards them? But there are I think, like you said, there's a lot more people that are becoming aware and slowly more skilled at working with this. So it's just about finding the team. Yes. Awesome. Thank you for so much for bringing that up. And thank you so much for being here. It was a pleasure talking to you. I feel like I could talk to you about a million more things, but.

Katie Goss [00:51:20]:

thank you for having me.

Andrea Moore [00:51:22]:

Yes, thank you. Bye.