Bend, Don’t Break: The Ehler's - Danos Syndrome (EDS) Healing Episode

Your body is not broken, it’s brilliantly adaptive. We unpack Ehlers-Danlos syndrome through a whole-body lens, showing how connective tissue shapes every system and why symptoms that seem random are often smart compensations. By tracing the common triad of EDS, POTS, and MCAS, we reveal how unstable collagen stresses circulation and the autonomic nervous system, which then primes mast cells to overreact. Seen together, dizziness, gut issues, fatigue, skin sensitivity, and “anxiety” stop feeling like chaos and start to look like a pattern you can influence.

I share the turning point from hospital protocols and medical ping pong to a functional approach that connects dots and prioritizes safety. We talk about why the nervous system can feel stuck in survival mode and how small, strategic changes: sleep and mineral routines, breath and vagal practices, gentle strength, fascia support, gut repair, mast cell calming, and mitochondrial care can reduce reactivity and restore stability. You’ll hear a clear, three-phase roadmap: first create safety, then strengthen core systems, and finally build long-term resilience so your body can tolerate more life with fewer flares.

If you’ve carried a list of diagnoses without a unifying story, this conversation offers grounded language, physiology-backed hope, and practical tools. The goal isn’t perfection or erasing EDS; it’s steadier energy, calmer symptoms, reliable digestion, and confidence in your body. Ready to move beyond symptom chasing and build a plan that honors your pace? Subscribe, share this with someone who needs validation today, and leave a review to help others find their path to stability and ease.

Chapters

• 0:00 A New Lens On EDS
• 2:40 EDS Basics And Bodywide Impact
• 4:30 Symptoms That Finally Make Sense
• 8:15 Hospital Frustrations And The Shift To Functional Care
• 10:55 How Compensation Drives Fatigue And Pain
• 14:18 The EDS, POTS, MCAS Triad Explained
• 19:10 Why Traditional Care Misses The Full Picture
• 21:06 A Functional Plan For Stability And Energy
• 24:00 Three Phases Of Healing And Resilience
• 27:10 Gentle Reminders And Hope
• 29:00 Invitation To Work Together And Resources
• 30:25 Medical Disclaimer And Next Steps

Transcript

SPEAKER_00: 0:00

Welcome to Harmony Hub Health, where my mission is to provide comprehensive, affordable, integrative care that addresses the root cause of health issues. At the Hub, the focus is on individual patient journeys. I strive to optimize health, vitality, and longevity, fostering a community where each person can thrive in body, mind, and spirit. Maybe you've been told you're just anxious, too sensitive, or even dramatic, or that your symptoms are not even related. Maybe you've bounced between specialists, each one zooming in on one puzzle piece while no one stopped to look at the whole picture of you. So before we go any further, I need you to hear this. Your body is not broken. Your body is not failing you. Your body is brilliantly adaptive and has been protecting you in the only way it knows how. So Ellers Danlows syndrome, also known as EDS, is not all in your head. It's not a character flaw or a mental weakness or something that you caused. It is a connective tissue condition that affects the body from the ground up. Literally. Down to the collagen that holds everything together. And when the foundation of the body needs support, the rest of the systems have to work harder to compensate. That compensation is not failure. It is your body's intelligence in motion. I want to help you understand what's really happening in your body, to finally connect the dots and to introduce a more compassionate, whole person approach to EDS that includes not just the physical body, but also the nervous system, your emotions, your energy, and your lived experience. Healing with EDS is not about fixing you. It's about helping your body feel safe, supported, and stable so it no longer has to fight so hard. So my intention is to help you feel understood in a way you may not have before, to explain EDS in clear, grounded human language, because you rarely get that. To give you hope, real hope, rooted in physiology, not fluff, and to show you a path forward that feels empowering, not overwhelming. So take a breath. You've landed in a place where your experience is not dismissed, it's honored. Your symptoms do make sense. Your story makes sense, and your healing can begin from a place of understanding and not fear. At Harmony Hub Health, I like to gently walk through what EDS actually is and why your body feels the way that it does, and how a functional medicine approach can support you in creating a life with more stability, more energy, and ease. So EDS or Ellers Downlow Syndrome is a group of inherited conditions that affects your connective tissue. Your connective tissue is the glue that holds your body together. Think of connective tissue as the scaffolding, the wiring, the shock-absorbing system of your entire body. It supports your joints, your skin, your blood vessels, your gut, your organs, and even your nervous system. When connective tissue isn't as strong or stable as it should be, the body has to work overtime to keep everything functioning. This can create a ripple effect of symptoms that seem totally unrelated until you understand the root. There are several types of EDS, but the most common is the hypermobile EDS, also known as HEDS. It's the one that many people live with for years before anybody recognizes it. Others have a more rare form that involve more specific genetic markers, but the experience many patients share is all very similar. Your joints move more than they should, so you have that hypermobility. Your tissues don't hold tension or structure well, and your body struggles to maintain that stability. With EDS, it's more than flexible joints. Connective tissue is everywhere, which means sometimes it can show up everywhere. Here are a few examples that I'll explain as to why your body wishes someone would explain them. So your joints that slip, sprain, or ache is probably the number one symptom that brings people to me. Um, but it's because the ligaments that are meant to hold them in place are very stretchy or lax. I just had uh a patient come see me for the first time last week. She had the best analogy, and I'll tell you, she's in high school. Her analogy was hair scrunchie. And she said, think of a hair scrunchie that's all stretched out. That's how her body was. And she tried to explain this to her doctor, and her doctor told her she was wrong. How brilliant of her to be able to understand this. Okay. Then the muscle tension and spasms because your muscles are doing extra work to stabilize what connective tissue can't. Then there's the fatigue and exhaustion because your nervous system and body are constantly microcorrecting. This is just to stand or to walk or sit upright. Um, that is tiring. And then the digestive issues because connective tissue affects your gut lining, the motility, and how your digestive tract moves the food through. Um, sensitive skin, easy bruising, or slow wound healing, that's because a collagen that gives skin structure needs support. And then the anxiety or feeling on edge. This is not a personality trait, but because your body doesn't feel physically stable or safe, when the foundation of a house is not secure, the walls, the floors, the roof, they all show signs of stress. EDS is so similar, and I know I use the house analogy all the time, but when the body's foundational support is wobbly, everything else has to compensate. This is why people with EDS often feel like a medical mystery. You may have collected a list of diagnoses along the way: IBS, chronic fatigue, migraines, anxiety, joint pain, TMJ, I've heard it all, pelvic floor dysfunction, reflux, sensitivities, dizziness, without anyone realizing that they all stem from one connected root. You are not a mystery. Your body has been communicating in every way that it knows how. Before I stepped into functional medicine, I worked as a hospitalist. Okay, don't turn this off. Don't turn off the podcast. I know how we all feel about hospitalists. And if I'm being honest with you, that is where I first started seeing EDS walk through the doors, but I didn't have the language or the freedom to treat it the way the patients deserved. I saw people with EDS, with POTS, unexplained symptoms, um, mystery illnesses, chronic pain, dizziness, tachycardia, fatigue, bodies that were clearly overwhelmed, and the system had nothing meaningful to offer them. I remember the internal conflict so vividly. I can even tell you the room number of this young lady was that I had almost my whole entire week. Because as a hospitalist, I worked seven days on, had seven days off, and she was stuck on a telemetry unit, which means it's the little unit with the little heart monitors. I remember her so vividly because the hospital system teaches providers to treat the crisis, stabilize the labs, and then discharge. Not really to understand the why. So all the protocols were very similar. Um, flood them with IV fluids, give them some salt tablets. Remember, I'm sure you remember this if you've been through this. You know, give them some compression stockings or a girdle, maybe throw a beta blocker at them, hand them a referral to cardiology who always refused to see them, rheumatology, neurology, GI, and psychiatry. And you hope that one of those specialists figures it out, and then you can send them home. It felt like medical ping pong. And I'll be honest, it did not sit right with me. I was ridiculed by my coworkers because I was looking for other ways and doing treatments, and nobody wanted to go from seeing me to the next hospitalist because I took the time and I listened. Um, because, you know, even then standing at the bedside, I knew that those patients needed more than symptom suppression or a stack of referrals or good luck, follow-up as outpatient. I could see that they were scared, they were exhausted, they were so misunderstood, and they were carrying years of being dismissed. And all I was allowed to give them was a temporary patch and get them out the door. It felt like placing band-aids on a sinking ship. The worst part, when their symptoms didn't magically disappear after discharge, they were labeled as non-compliant, anxious, somatic. That used to get on my nerves so bad. No one was asking why their body was reacting that way. No one connected the dots. No one supported the nervous system, their immune system, gut, or connective tissue as a whole. That was the moment I realized I didn't want to be another stop in a patient's medical scavenger hunt. I wanted to be the place where everything finally made sense. Functional medicine gave me the tools, the freedom, the freedom, and the permission to treat humans as whole beings and not a protocol. Now instead of stabilize and discharge, I get to help patients. I get to help them understand their body. Um, I get to help them feel seen and safe. I help them rebuild trust with their system and actually heal layer by layer. So leaving the hospital wasn't walking away from medicine. It was walking toward the kind of medicine EDS patients have needed all along. So now that you know EDS affects the connective tissue and literally hold you together, let's talk about what that actually means for how your body functions day to day and why the symptoms you experience make so much sense when you view it through a whole body lens. Functional medicine looks at the body as an interconnected system, not isolated parts. With EDS, this approach is essential because connective tissue is not just one body system, it is the fabric that supports them all. When the body scaffolding is more flexible or unstable, other systems have to overcompensate to keep you upright, to keep you functioning, and to keep you safe. So I want to break down in a clear way that your body is working overtime and that is exhausting. Joints and tissues, they don't provide the usual stability. Um, your muscles, the fascia, and the nervous system step in to do that job. Think of your body like a team where one member, which is your connective tissue, is struggling. Everybody else has to pick up the slack. So this leads to muscle tension and chronic tightness. So your muscles are starting to act like human duct tape. Uh, fatigue because your body burns more energy just trying to exist upright. And overreactive nervous system because your body's constantly scanning for physical instability. So this is not weakness, it is compensation. And compensation is a sign of your body's intelligence, not failure. Your nervous system learns to be on alert. If your body doesn't feel physically supported or safe, your nervous system stays in a mild on guard mode. So, what does that look like? Um, you can feel jumpy or easily overwhelmed, you can have difficulty relaxing, um, you can have sensitivity to noise, to lights, to temperature, even touch. And a lot of people say, Why am I anxious for no reason? I don't have a reason to feel anxious. It's because they don't realize what their body is doing in the background. Many people with EDS, they don't have anxiety. They have a nervous system in survival mode due to physical instability. And there's a big difference. And I know this is a big statement, and there may be some people out there that think, no, you got it wrong. But think about it. You're not having anxiety, you're in survival mode, and your body is very unstable. Um, and this is why digestive issues make sense too. The gut relies on connective tissue and nerves and muscle tone, all which can be affected in EDS. And this is why most EDS come to me with bloating. Um, they either have constipation or slow motility, maybe they have reflux. Um, they might have food intolerances, and it's not the gut that's misbehaving, it's just that it's operating with different structural support and nervous system wiring. And your body is not falling apart, it's protecting you. I want to reframe what most EDS patients never ever hear. Um, your symptoms are not your body failing, they are your body adapting. The body tune is a beautiful thing. It is so amazing if you sit down and think about your body systems and what they're doing without any extra guidance or help. Okay. Every pain, every spasm, every sensitivity, um, the moment of fatigue, you know, it's all your body's way of holding you together and keeping you safe with the resources that it has. You've never been weak, okay? You have been stronger than most for longer than most because your body has been doing double the work without acknowledgement. The other thing that I can't not bring up is the EDS pots and MCAS connection. If you've ever wondered why EDS rarely travels alone, then this is gonna be your huge aha moment. I see it all the time when I talk to patients. Um, if you've ever felt like EDS came with a collection of bonus conditions that no one warned you about, you're not imagining it. Most people with EDS, they don't just have EDS, they have a cluster of conditions that show up together so often that they've earned a reputation as the triad. So the triad is EDS, it's POTS, and then it's MCAT. So I want to break these down so that you can finally see the bigger picture. So the first is the EDS, the Ellerge Downlow Syndrome. It's a connective tissue condition that affects collagen. That means the body's support structure is more flexible, more stretchy, or unstable. This affects your joints, your skin, your blood vessels, digestion, pelvic floor, all of the above. When connection tissue is loose, the body struggles to maintain stability. And that sets the stage for the next two conditions. Number two is POTS, it's postural orthostatic tachycardia syndrome. It's a form of dysautonomia, which means the autonomic nervous system, that's the part of your nervous system that controls your heart rate, your blood pressure, your digestion, your temperature, and more. Um, but it has trouble regulating itself. So why does that happen in EDS? It's because your blood vessels are also made of connective tissue. So the more flexible um they are and they don't tighten efficiently to push blood upward when you stand, this causes dizziness, high heart rate, fatigue, brain fog. You feel like you're gonna faint. Some people actually do, um, and you have intolerance to standing and heat and stress. It's not because your body is weak, it's struggling to maintain blood flow with these stretchy vessels. It works twice as hard to do what others can do effortlessly. Not really fair, right? The third part of the triad is the MCAS. This is mast cell activation syndrome. And mast cells are part of your immune system, they release chemicals like histamine to protect you. Um, with MCAS, they release too much, sometimes too often, or usually to the wrong triggers and they create inflammation, sensitivities, and unpredictable reactions. So, why does MCAS show up with EDS and POTS? Because when the nervous system is on high alert because of this physical instability and your circulation is dysregulated, the immune system becomes hypersensitive. Mast cells go into threat detection overdrive, and it leads to symptoms like itching, hives, flushing, multiple food or environmental sensitivities, GI issues that look like allergies, um, headaches or migraines, you get this unexplained inflammation, and then reactions to smells, heat, stress, and certain foods. Your immune system is not overreacting for no reason. It's trying to protect a body it perceives as vulnerable or unsafe. So to connect the cycle, EDS makes the body physically unstable, which stresses the autonomic nervous system, which leads to POTS and circulation challenges, which puts the immune system on high alert, triggering MCAS symptoms and sensitivities, which inflames tissues and worsens nervous system sensitivity, feeding back into more pots and EDS symptoms. It's a cycle and it's not in your head. It is a real physiological loop. And one of the things I like to let people know is you are not unlucky for having all three. They appear together because they share root causes, they share the same pathways, and they're all compensations. The beauty of functional medicine is that we address the body as a whole system. So when we support one of these, we often help the others improve too. You can see that EDS is not a single issue condition, it is a whole body experience, and that's exactly why so many people feel unheard in traditional healthcare. Conventional medicine tends to divide the body into separate departments. You have joint pain, go to ortho. Is your heart rate fast? Then go to cardio. Um, if you're having gut issues, go to GI. If you're having allergies and sensitivities, well, we're gonna send you to an allergy clinic or to immunology. But each specialist looks at one puzzle piece. EDS requires someone that looks at the entire picture because every system is connected. And this is where functional medicine changes the experience for EDS patients. Functional medicine doesn't ask, how do we suppress this symptom? It asks, why is the body responding this way and what support does it need to feel safe and stable again? So that's what makes this approach different and deeply hopeful. I see your body as intelligent and not broken. Instead of seeing your symptoms as malfunction, we view them as your body's best attempt to adapt, protect, and compensate. Our goal at Harmony Hub Health is to give your body the tools, the resources, and safety it needs so it no longer has to fight so hard. And a functional medicine plan for EDS doesn't try to fix the collagen. We focus on the areas that can be strengthened, stabilized, soothed, and regulated while we improve the collagen. So, so the areas at Harmony Hub Health that I focus on improving, number one is your nervous system regulation. So your body doesn't feel constantly unsafe. Then it's gut support because it affects immunity, your nutrients, inflammation, and your mood. Then your immune system balance and mast cell calming, then mitochondrial and energy support to reduce that fatigue and that overwhelm. Um, we definitely address minerals and nutrient optimization, um, lifestyle modifications that actually help and don't restrict, and trauma-informed body healing and fascia support. This isn't about fixing EDS, it's about creating stability. So you may not change your connective tissue blueprint, um, but you can change how your body functions within it. Many people with EDS experience less pain, better digestion, more energy, reduced sensitivities, fewer flares, and more stability and resilience. Not because we change their diagnosis, but because their environment, their nervous system, and internal resources have changed. This is healing versus curing, and this is a very important distinction. Curing means you're going to eliminate the condition. With EDS, that's not the goal. Healing means improving function, comfort, stability, energy, and quality of life. That is absolutely possible. We are not destined to struggle. Your body can feel better, it can feel safe, it can feel stronger and more supported than it does right now, one layer at a time. And you can see that EDS is not a single issue condition, it is a whole body experience, and that's exactly why so many people feel unheard in traditional healthcare. Conventional medicine tends to divide the body into those separate departments. And that's why one of the most empowering parts of functional medicine is that healing isn't expected all at once, especially with a functional approach to EDS. Your body didn't arrive in survival mode overnight, and it deserves a healing process that is gentle, that's layered and supportive, not rushed or overwhelming. Think of healing with EDS like strengthening a foundation of your house, right? You don't start with the roof, you start with the ground it stands on. And the same is true for your body. And Harmony Hub Health, I like to work in phases so that I don't overwhelm, especially since a lot of uh my patients are younger patients, which I don't know if that's why doctors aren't taking them very seriously. But the first phase is safety and stabilization. This is the most important step and the one most people skip. Your body has to feel safe to heal. So we focus on helping your nervous system shift out of constant on alert mode. Okay. We want to reduce overwhelm and reactivity in the body. I want to support those pillars of health, your sleep, your hydration, um, minerals, gentle movement, and routines that calm the system, and then introduce practices that help your body exhale for the first time in a long time. This is where patients often begin to tell me, my body finally feels like it's not fighting me 24-7. And the patient that I saw this past week, this is what brought me to say, have I not done this as a podcast before? One of the first things she said when she sat in my uh room was, Why does my body not like me? And I was like, She is so brilliant. Um, phase two is support and strengthen the coarse systems. So once the body starts to feel safe, then we begin to strengthen the systems that are most impacted by EDS. So your digestion health and nutrient absorption, your body needs fuel that it can use. Then we want to immune balance and mast cell calm. And we want mineral and mitochondrial support for energy, and then gentle strengthening for joint stability and fascia support. This is where small shifts start to add up. Your digestion eases, your energy improves, sensitivities reduce, and crashes become less frequent. Phase three is deep regulation and resilience. So with your foundation supported, we then work on creating long-term stability. So we want to improve the autonomic nervous system balance. This is what helps the pot symptoms. We want to enhance tolerance for movement, stress, food, and daily life. We want to expand what your body can handle without flaring. Um, and we want to build emotional, physical, and energetic resilience. This is where life starts to begin to feel bigger again. You have more capacity, you have more joy, you have more freedom. And just a side note, healing won't look like a straight line, it's more of a spiral. Or sometimes I say it looks like um, what is that? People invest in that little stock market line. Each cycle can bring you a stronger version of yourself. And my patients notice fewer and less intense flares, um, faster recovery when flares do happen, uh, more energy and mental clarity, and increased stability and confidence in their body. So the goal is not perfection, it's ease, it's capacity and a life that feels more like living than coping. You do not need to push through to heal. You do not need to earn rest or progress. Your body heals best when it feels safe, supported, and listened to, not forced. Those are things I really want to have anybody with EDS here, even if you're not a patient of Harmony Hub Health, because it's a kind truth and it's something you've probably never heard before. Healing with EDS is not about becoming a different person. It's about allowing your body to function with more grace, more stability, and peace. And that is absolutely within reach. Many people with EDS, they spend years searching for answers, validation, and someone who will finally look at the full picture. The fact that you're even listening to this means you're already stepping into a new chapter of understanding, of alignment, and support for your body. So I want to leave you with a few reminders as you move forward. The first one is you are not alone. What you're experiencing is real. And others are walking this journey too. So there is community, connection, and support out there. Um, your body is not working against you. That's what a lot of people think. It has been adapting, compensating, and protecting you in the only ways it knew how. Now, with the right support, it can learn new patterns that feel more safe and more sustainable. And know that healing is possible. I'm not saying curing, I'm saying healing. Um, I'm not saying you're gonna be perfect, but I'm saying there will be progress. And it's not gonna happen overnight, but over time with compassion and the right tools. Functional medicine does not offer magic fixes or the advice of just deal with it. It offers support, strategy, and partnership. So you don't have to figure this out all by yourself. If you do choose to explore this healing journey with Harmony Hub Health, here's what working together might include. So it starts with a full-body root-cause approach that considers your unique biology and lived experience. Then it looks at nervous system-informed care. Then I look at gut immune hormone and energy support, then personalized nutrition and supplement guidance, mineral balancing and advanced functional medicine testing, and a safe space to be heard, understood, and supported. There is no pressure, there's no urgency, and no expectation, only an invitation to partner with someone who understands the complexity of EDS and really honors your pace. You do deserve care that sees all of you, not just your symptoms. You deserve a plan that brings hope, not just overwhelm. And you deserve a body that feels safer to live in, not one you're constantly fighting. Healing is not about becoming less you, it's about letting your body feel supported enough that more of you can come forward. Whenever you're ready, I'm here to walk with you gently at your pace as you build a version of life that feels steadier, freer, and more like home in your body. If today's episode made you feel seen or validated, or maybe even a little emotional, because for the first time someone finally explained your body back to you. I would love to support you on this journey. If you're ready to move beyond symptom chasing and start truly understanding your body through a functional and whole person lens, you can book a functional medicine consultation with me at Harmony Hub Health. I'll take the time, connect the dots, and create a personalized plan that honors your pace and your nervous system. Or if you know someone who's struggling with EDS, POTS, MCAS, chronic fatigue, or mystery symptoms, please share this episode with them. You never know who might finally feel understood because of it. To book a functional medicine consultation, you can find me at www.harmonyhubhealth.com. You can even text me if you have a question at 410-575-4274. I do virtual and in-person consultations. You can also email me at Michelle, that's M-I-C-H-E-L-E at harmonyhubhealth.com. I look forward to being on this journey with you. This podcast is for educational and informational purposes only and is not intended to diagnose, treat, cure, or prevent any disease. The information shared in this episode reflects my clinical experience and research and functional and integrative medicine, but it is not a substitute for personal medical guidance or care. If you suspect you have Ellers Downlow syndrome, POTS, MCAS, or Any related condition, please consult with a qualified healthcare provider who can evaluate your specific needs and medical history. Do not make changes to your medications, treatment plan, or health routine without speaking to your medical team. Listening to this episode does not create a patient provider relationship. If you would like individualized support or wish to work with me directly, please refer to the links in the show notes to schedule a consultation.