EPISODE INTRO: Hey, beautiful soul, and welcome to Dear Body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, well, this podcast is for you because your body is not lying and neither are you.
Hi, I'm Donna Piper, Movement Therapist, Pilates Instructor and Chronic Illness Navigator. After years of being dismissed, misdiagnosed and doing everything, quote unquote right, but still getting sicker, I created this space to tell our truth. Here we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph, breath, movement, self trust, latest research books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Hey, beautiful soul, welcome to Dear body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness and that daily dance between hope and exhaustion. If you've ever been told it's all in your head, this podcast is for you, because your body is not lying, and neither are you. I'm Donna Piper. I'm a movement therapist, pilates instructor and a chronic illness navigator. So after years of being dismissed, misdiagnosed and doing everything right, quote unquote, but getting sicker, I created the space to tell the truth, our truth. Here we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We explore the lymph, breath, self, trust, latest research books, relationships, basically everything, because we are all living in this body and in the world, and all from a place of compassion and honesty. This isn't about fixing your body or you. It's about finally being heard and getting some answers. So let's dive in.
This is a real talk recap. When people hear the world is flexible, they often say that that must be great. You're such a good dancer, that must make it so much easier. Movement is so much easier. And yes, it was. And yes, it can be. But what they didn't see, and what I didn't realize was that flexibility comes with pain, fatigue. The way my body could overwork itself just to hold it together. Long car trips, any car trips, just sitting at my desk, all the substitution I did just to get my body alert to hear, to move. And it wasn't until much later that I learned that there's something called hypermobility spectrum disorder, and also Ehlers-Danlos Syndrome, EDS. And there's so many types of EDS, and there's so many types of hypermobility. I knew I was hyper mobile. I'd been told I was hyper mobile, but I was like, it's just my joints can go past that point. Oh, my fingers, when I write stuff, or I have to hold on really tight, there's always gripping. I didn't realize that gripping wasn't supposed to be there. I realized that it was creating a lot of symptomology, and I just didn't know how to take care of myself. I didn't really learn the effects of hypermobility on my body until I was diagnosed with lipedema, mast cell activation and chronic fatigue.
I knew I had hyper ability, but I didn't know it was a thing. And that you might have that as well. You may not even know that you're hyper mobile because your joints are only a little bit hyper mobile, so there's a spectrum. But those hypermobility if a connective tissue issues are playing a role in how you move, how you work out, and how you feel. So after doing a lot more research, I started to kind of think, oh, this all makes sense. My joints that I could crack, and the fatigue I felt after doing, sometimes I could go days with dancing, or I can run, go up a huge mountain, or I could do a lot of stuff. And the next day, I just had to crash. Or maybe just coming home when I wasn't around people, my body just needed to lay down, and I didn't understand why. So now I understand how much effort it takes to go on a car ride, or just hold myself up from the inside. And the wild part is EDS, HSD, lipedema, POTS, MCAS, they're all connected, and not everyone knows that. Now, more people are. But they're all seeing all these overlaps. And it was again that I didn't know, and no one told me, and maybe you're in the same boat. So now, it's time to let's get lymphatic and structural.
So what is EDS hypermobility? So there's something called Hypermobility Spectrum Disorder, HSD and Ehlers-Danlos Syndrome, EDS, and their connective tissue disorders. And what that means is that the glue that holds everything together in your body, the ligaments, the skin, the blood vessels, the organs is too stretchy, too loose, too unstable, and that is flexibility. Yes, it's great, but also comes at a cost. So your body has to work twice as hard just to move through daily life. Muscles are constantly overcompensating to keep joints from slipping out. Poor posture requires constant effort, and things like standing, walking or even sitting up can trigger fatigue faster than expected. Everyone has a range. Some people have really loose tunes, somehow just a little. But if you have a connective disorder like lipedema, which is a connective disorder, that's one of the tests. They do an ultrasound to look at your connective tissue, and that's part of the diagnosis. And once you have loose connective tissue, you have more mast cells trying to help out. So that creates histamine. There's also POTS, which we'll talk about later. But basically, it has to do with the pressure of your blood and getting light headed when having a higher blood heart rate when you're standing, and things like that.
So everyone, again, all these are not one size fits all. Some people can have a little bit to a degree, or maybe not show up as much. Maybe they have the underlying ingredients for the thing, but it actually hasn't come to manifest, and it could later. Again, everything is highly, highly, highly individualized. But just to give you some information about what it is so you could maybe look in different areas to see if, oh, I'm doing all the things over here with all of the illnesses that I know about. But what about this one? Do I have a little bit of it? Or can I benefit from treating that without actually having the official diagnosis? So if you've been diagnosed with one, chances are you are checking the box for others too, and what they often share is brain fog, crushing fatigue, dizziness, poor temperature regulation, GI issues, histamine intolerance, MCAS, anxiety or feeling wired. So all of this is because of how interconnective your connective tissue and your nervous system, and your lymphatic systems, truly are.
And if your joints are unstable, your nervous system is on high alert, that means there's more inflammation, more fatigue, more histamine responses, and your body ends up working overtime just to stay upright. So if you think you have any of these syndromes or on the spectrum, I highly encourage you to take some deep dives, and I'll have some resources linked in the show notes so you could start going down the rabbit hole, which we all do because we're our best advocate, we're the more we know about other things, and we kind of can piece our own healing together. So really, it's kind of like a quilt. It's all patchwork. We're taking a little bit from here and there. We're trying it on, trying it out to see if it works or it doesn't. So if you have a practitioner that you go to, that's great. If you don't, you have to probably do a lot of education with them, and that's also great. You want to make sure some of the stuff you do are also in the realm of the higher medical world, just to make sure you're not doing anything too much to your body. So everything, and I don't subscribe to that.
Some people think sodium is too much. Some people think it's not enough. I have to do experiments to figure out how much sodium I need. Just because it didn't work for someone doesn't mean that it's wrong. You really have to figure out your own stuff. I'm just here to give you some information to know what questions to ask, and who wants to try to experiment. So that leads me into one of my favorite segments, our (inaudible) segment. I get questions from friends, family members, things I've been asked over and over. And if you would like to submit a question, you can always put a question at [email protected].
The question is, how does hypermobility actually affect your energy? That's a great question, and I'm still trying to figure out the true answer. But here's the thing, every time I move, stand, bend, reach, my body has to do extra work to keep my joints from overextending. So if you want to imagine it like your skeleton doesn't quite snap together, firmly, and so your muscles have to hold the tension all the time to create that stability, and that's why I get fatigue faster. And it's not weakness, it's physics. So part of it too is I used to always drive, and my husband would make fun of me. Because how I would drive is I would push my hand down and hold my thing, and I kind of brace myself. It feels more comfortable to drive because I have to be more alert. So my body's already in that place other than being the passenger, which I'm always like, oh, gosh, sure. I'm always complaining, oh, you're going too fast. You're stopping too much. It's because I'm not anticipating what's going on. Because I don't know. My brain's not in that place to safety. My body has to catch up so it's harder on it. All of that extra work that I'm doing to substitute what my body needs for stability takes a lot of energy.
The other thing is, many of us have hypermobility, whether you're hyper mobile, or you have some portion or some variant of EDS. You have blood pooling dysautonomia, and that's like POTS, low grade inflammation all the time. That's also a drain of your energy, especially with lipedema. I'll go into it more and more. But basically, with the lipedema, that needs to be carried through your lymph? Is the lymph not working right? It can't pull those larger molecules through the lymph, so it's creating some pooling there. Your body's doing all these things to try to link, oh, my gosh. We need to get it out. So it's overdrive, which is creating that inflammation. Because inflammation is a healing response of your body. But when you're in our chronic condition, like most of us have, our body gets worn out because it becomes that chronic safe coming to the rescue of all of our body things that we don't see or know that's going on, that also creates a lot of fatigue.
You're trying to run a marathon while holding together a Jenga tower, right? Because all these parts are going and it's really loose, so it's harder to come together. And then if you haven't been told this, or you had no idea, you might end up blaming yourself for being lazy, or I don't know why I can't do it, I'm just out of shape, things like that. So if you call yourself lazy, some internal talk or out of shape, you really are not. You're really an Olympic level competitor, because your body is doing so much more than everyone else. And again, this is all unseen. Maybe it doesn't look different from what someone else is doing. But internally, you're doing a whole heck of a lot more.
So now, we're going to go on to feel good flow. So today, I want to talk about side lying breath reset. So this is great, especially if you have been out in the world doing things. You could just lie on your side. Or if that's more comfortable, you can always do this on your back. But if a side movement is supportive, think of putting some pillows or something underneath your rib cage, your head, your diaphragm and your nervous system. This is what is going to support it, and it's especially effective if you have hypermobility. Because sometimes, being on your back is not the best. So doing this breath work on the side is really great.
Let's begin. So let's get into how to do it. So line your side, bend your knees, support your head with a pillow. And like I said, if you feel like you have a lot of bending in your waist, you could put a little support under your waist just to give your ribs and your waist a little extra so your spine isn't too compressed. Then place your top hand on either the side of your rib cage or in front of you. I want you to inhale slowly through your nose and feel your ribs gently expand, either into your hand or just into the side of your arm. You want to feel that side expansion of your rib cage. And then as you exhale through your mouth, long and slow, feel the ribs go back down and do this for like two to five minutes. And then gently, you could go to the other side. And what happens when you do this? It just allows your body to feel supported by the earth underneath you, and in a way that you can just focus on your breath, your rib cage, all little muscles in your spine. They don't have to work, and you can really work on expanding the rib cage and getting the breath there deep diaphragmic Breathing is really great for your lymphatics, and it's really important when you have lipedema, or mast cell, or all of these things that you really get deep breaths to help pump all that fluid up and out. So not only does this reset your breath, it gives your spine a break, and it helps calm your nervous system without over stretching or over efforting. So the bonus tip here is you could do this anytime you feel like it, or try this before bed. If you feel like your joints are just talking too loud, if you feel really achy, and if you try it, let me know how it goes.
So if this episode made you feel even a little more seen, brought you clarity, or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can find more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. And if you have a question for me, every month, I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories or flare up confessions to [email protected], and you might hear your answer on this show. Until next time, Dear Body, I'm Listening. I am so glad you're here.
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EPISODE OUTRO: So if this episode made you feel even a little more seen, brought you clarity, or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can find more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. And if you have a question for me, every month, I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories or flare up confessions to [email protected], and you might hear your answer on this show. Until next time, Dear Body, I'm Listening. I am so glad you're here.
