The Invisible Weight: Decoding Lymphedema's Hidden Dangers

Betrayed by my body and dismissed by doctors — this is my story of facing an invisible epidemic affecting 250 million people worldwide. When I inexplicably gained 40 pounds despite maintaining my athlete's lifestyle, five different medical professionals told me to simply embrace the weight gain or suggested I had mental health issues. One even questioned my gender identity rather than investigating my physical symptoms.

The truth finally emerged when a small-town doctor took my concerns seriously and discovered dangerously high inflammation markers in my blood — a potential precursor to serious illness. My diagnosis? Lymphedema, a chronic condition affecting the lymphatic system that causes persistent swelling, fatigue, and potential complications when left untreated. Despite affecting more Americans than HIV, ALS, Parkinson's, and multiple sclerosis combined, lymphedema remains widely misunderstood and frequently misdiagnosed.

This episode takes you through my personal journey from sponsored adventure athlete to struggling with mobility, the frustrating experience of medical gaslighting, and the natural approaches that helped me regain control of my health. I share the diagnostic indicators of lymphedema, treatment options including pneumatic compression devices like the FlexiTouch system, and how targeted exercise, lymphatic massage, and specific nutritional strategies helped put parts of my condition into remission. For anyone facing unexplained weight gain, persistent swelling, or dismissive healthcare experiences, this convers

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Chapters

• 0:00 My Lymphedema Story Begins
• 8:47 Medical Gaslighting and Inflammation Markers
• 16:13 Understanding Lymphedema and Its Impact
• 21:47 Patient Advocacy and Self-Empowerment
• 24:20 Adventure Sports Lifestyle Micro Story

Transcript

Speaker 1: 0:01

New, normal big life.

Speaker 2: 0:05

Swollen, dismissed, your body's betraying you. Picture this 250 million people worldwide, 10 million in the US, more than HIV and ALS combined, trapped by lymphedema. A silent wrecker. Me I ate clean, hit the trails, lived big. Then, bam, 40 pounds piled on, no explanation. Dr Smirk cast, lit me, just embrace it, they said, or even asked if I'm in the wrong gender. It took a small town doctor to crack it. Sky high inflammation, a ticking bomb in my blood. Stick with me Today's about lymphedema, spotting it and fighting it. Naturally, you're not crazy and you're not alone. Hi friends, welcome to the new normal big life podcast. We bring you natural news and stories about nature that we hope will inspire you to get outside and adventure, along with a step-by-step plan to help you practice what you've learned and create your own new normal and live the biggest life you can dream. I'm your host, antoinette Lee, the Wellness Warrior. Let's start by understanding the connection between lymphedema and weight gain. Is lymphedema causing your weight gain? My legs, core, face, neck had swollen to three times their normal size, but I was gaslit by five doctors.

Speaker 2: 1:27

In 2020, I was at the peak of my physical health as a sponsored adventure sports athlete. Over four weeks, I challenged myself with intense activities, including whitewater kayaking on the Arkansas River and Caché-Laputa River in Colorado, followed by summiting Medicine, boat Peak and Baxter's Pinnacle in Wyoming. Mere days later, I pushed my limits even further by attempting to climb the Grand Teton. But by January 2024, my physical condition had deteriorated dramatically. I now required the support of a cane to walk. Dramatically, I now required the support of a cane to walk.

Speaker 2: 2:08

Despite following a strict whole food diet, maintaining regular exercise and continuing my adventures several times a week, I inexplicably gained 40 pounds. The swelling and weight gain were confusing, as they seemed to defy my otherwise healthy lifestyle and dedication to fitness. This unexpected decline in health left me searching for answers, trying to understand why my body had betrayed me in such a baffling way. Of course, two general practitioners and three specialists a nephrologist, rheumatologist and cardiologist didn't believe my story about unexplained waking. They gaslit me. They all said I'm just putting on a little weight and talked about body positivity. We'll talk about the body positivity movement and its negative consequences in a future podcast For this conversation. I know that one specialist asked me if I thought I might be living in the wrong gender. I don't know how the conversation with my cardiologist went from discussing concerns about unexplained weight gain, swelling, fatigue and worries for my heart as a result of these conditions, moved to his suggestion that I had gender dysphoria. But there we were, and in total five doctors tried to refer me to mental health rather than take my symptoms seriously. When I finally found a country doctor who did believe me and ran some tests, it turned out I had dangerously high inflammation markers.

Speaker 2: 3:36

Doctors often use blood tests to test for white blood inflammation in the body, and one standard marker is C-reactive protein, or CRP. Crp is produced by the liver and it rises when there's inflammation, making it a reliable indicator. Another key marker is the erythrocyte sedimentation rate, or ESR, which measures how quickly red blood cells settle in a test tube. Faster rate signal inflammation. Beyond CRP and ESR, doctors might also look at other markers, depending on the situation. For example, procalcitonin PCT is sometimes used to detect inflammation tied to bacterial infections or sepsis. Cytokines like interleukin-6, il-6 can also be measured, as they are a protein that ramp up during an inflammatory response. Tumor necrosis factor alpha, or TNF alpha, is also often linked to chronic inflammation or autoimmune conditions. In some cases, they might check white blood cell count, or WBC, since an elevated count can hint at an inflammatory process, though it's less specific. Each marker gives slightly different marker on inflammation, so doctors pick based on what they suspect is happening. Crp and ASR are the go-to starting points, but the others come into play for more specific diagnoses.

Speaker 2: 5:09

The dismissal of my symptoms by my medical professionals led to a sense of betrayal and mistrust in healthcare providers, mainly when dealing with complex or less understood conditions. This issue of medical gaslighting with sufferers like me is prolific. Medical gaslighting is when healthcare providers dismiss or downplay a patient's symptoms, contributing them to psychological issues or lifestyle choices, without adequate information or investigation. This can be particularly harmful when it comes to conditions that don't fit into common diagnostic patterns or when symptoms are unclear. Experiencing skepticism from multiple doctors, especially when they suggested my symptoms might be related to psychological or identity issues without basis, is a profound form of gaslighting. This not only delays proper diagnosis, but it can also exacerbate or make worse the health issue due to prolonged exposure to untreated symptoms.

Speaker 2: 6:17

So let's look at the role of inflammation with lymphedema, inflammation in the body and elevated levels, like what I experienced, can indicate a wide array of problems, like infectious diseases or autoimmune disorders, and even certain cancers. Higher levels can lead to swelling, weight gain and general fatigue, which explain my physical changes. According to the Lymphatic Education and Research Network, up to 250 million people worldwide have lymphedema, with an estimated 10 million in the United States. More than HIV, parkinson's, multiple sclerosis and multiple dystrophy and ALS combined, and I inexplicably gained 40 pounds and experienced severe swelling in my legs, core, face and neck. So, with my story in mind, your weight gain could be related to lymphedema, so consider talking to your naturopath or medical doctor if you have had unexplained, swelling World events are constantly teaching everyone some very painful lessons.

Speaker 1: 7:21

Swelling World events are constantly teaching everyone some very painful lessons. Without warning, everything we take for granted can suddenly fail, and if you're not prepared in advance, you really don't have a chance. The fact is, the modern world runs on a just-in-time supply schedule. Even the biggest grocery stores can carry only enough food for a few days worth of normal shopping. So when disaster strikes and chaos ensues at your local stores, the odds are simply against you. If you don't have emergency food and gear stockpiled in advance, you will probably suffer.

Speaker 1: 7:51

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Speaker 2: 8:44

My persistence in finding a doctor who would take me seriously and, at a minimum run, some tests might have saved my life. High C-reactive protein problems are linked to cancer, infection, cardiovascular disease, autoimmune disease like lupus, pericarditis and inflammation in the lining in the heart, type 2 diabetes and other potentially life-threatening diseases if not treated. That's why you have to be your own patient advocate and advocate for people you love. So let's talk about advocacy. My experience highlights the importance of patient advocacy. Sometimes you have to persist against medical skepticism to find a diagnosis. It's crucial to seek out different medical opinions, especially when initial interactions with your healthcare provider don't lead to satisfactory outcomes. Sometimes a doctor outside the mainstream urban or suburban medical center like my country doctor or a naturopath urban or suburban medical center, like my country doctor or a naturopath might have a different perspective or approach. Not all conditions fit neatly into well-known categories. Chronic inflammation conditions might not be immediately obvious or well understood by all practitioners. So, after this experience of gaslighting by my doctors, I have this advice for you it's important to find health care providers who will listen and validate your experience. Building a relationship with a doctor who considers your symptoms with seriousness can be vital for ongoing care and you can't afford to sit back and blindly follow your doctor's lead. Blindly follow your doctor's lead. Consider documenting your symptoms and preparing for appointments with notes or questions to ensure that your questions are addressed. My lymphedema diagnosis story underscores the need for empathy and investigation and a holistic approach to medicine, where each patient's story is taken seriously, regardless of how unusual their symptoms might be.

Speaker 2: 10:40

Before we cover the next topic in this episode, I want to introduce you to something that I call the adventure sports lifestyle, with what I like to call a micro story about adventure that I've had. The adventure sports lifestyle and my deep connection to nature is essential to my good health. So here's the story. After learning to whitewater kayak with a club for injured veterans, I went on more and more challenging whitewater kayaking adventures. Before that, in 2015, I was afraid to take even one step out of my front door. Then, on a rafting trip five years later, my worst paddle sports fear came true. Our raft flipped and I ended up underneath the raft. Using my swift water rescue training, I successfully got to safety and helped someone else get saved as well. We got help from a passing raft and we swam the Caché Laputa River just before it was declared at flood stage. Now I can discern the difference between real fear and imagined danger. I'm no longer paralyzed by fear. I did that. I hope this story inspires you to get outside and adventure alone with friends or other people that you love.

Speaker 2: 11:46

Now that you know, 10 million Americans have lymphedema, and you might be one of them. Let's understand how lymphedema happens and how it's different from other types of swelling. Lymphedema is is caused by abnormal fat cell distribution, while lymphedema is caused by a blockage in the lymphatic system. Lymphedema is when swelling sticks around for a long time and doesn't go away. It's like your body's plumbing system for cleaning up fluids isn't working right. This fluid called lymph is supposed to move around your body through special tubes and stops called nodes or lymph nodes, but if these tubes or lymph nodes or stops get blocked or damaged, the fluid can't move properly and pulls up, making your arms, legs, core or even your face and neck swell up. When this happens, your body might start making more of stuff called collagen, which is like a building material for your skin and fat, making the swollen parts of your body feel heavy and look bigger. You might also feel very tired. I suffered from chronic fatigue and had to stop driving for fear of falling asleep at the wheel. Also, when you have lymphedema, your skin might get dry, thick or cracked, which can make it easier for you to get skin infections. If the swelling continues for an extended period, lymph fluid can burst through the skin and ooze out, often causing infection at the site. Unlike regular swelling, lymphedema doesn't go down much, even if you elevate your leg or arm or take medicine like diuretics that makes you pee a lot. You might need special help from doctors and lymphedema therapists to manage your lymphedema symptoms. If you or someone you know loves swelling that disappear, it's good to check with the doctor.

Speaker 2: 13:43

Lymphedema is a condition characterized by the accumulation of lymphatic fluid, causes swelling in parts of the body, and it continues to be an unrecognized yet impactful issue. Here we delve into its commonness or prevalence and how you diagnose it and treat it, and how it affects even well-known personalities, and how it affects even well-known personalities Suffering from lymphedema are passing the commonness of multiple sclerosis, parkinson's, als and AIDS all combined. You might wonder who's at risk for having lymphedema Cancer survivors, particularly those who've undergone treatment involving lymph node removal or radiation, such as breast cancer survivors. The risk can be as high as 30%. Veterans, due to injuries, infections or exposure to environmental hazards like burn pits, are susceptible. But the Veterans Administration has a great lymphedema treatment option like lymphatic massage and a pneumatic compression device called a FlexiTouch. I have one, I use it at home and it's a game changer, and I'll tell you more about the FlexiTouch in a minute.

Speaker 3: 14:46

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Speaker 3: 16:00

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Speaker 2: 16:54

There have been some cases of lymphedema in newborns.

Speaker 2: 16:58

however, Now that you understand what lymphedema is and who's at higher risk for developing this condition. Let's talk about diagnosis and treatment. Lymphedema diagnosis involves a physical examination where signs like stimmers and inability to pinch a fold of skin at the base of the second toe indicates lymphedema, or sophisticated methods which include MRI or CT scans to identify obstructions or tissue changes. So how do you know if you have lymphedema? Here are the symptoms Swelling in your arms, legs, torso, face and neck or other parts of the body. Skin changes, including thickening hyperkeratosis or a sensation of heaviness, cramping and fatigue in your your limbs, for example, tightness, discomfort or pain in affected areas. And did I mention fatigue? Because it was incredible? Doctors say there's no cure for lymphedema but it can be managed to improve quality of life. In a follow-up podcast I'll tell you how I avoided taking prednisone, eliminated the swelling caused by lymphedema for long periods, lowered my inflammation markers by 20 points in less than 90 days, naturally, and lost 30 pounds in less than 90 days, all using natural methods. So let me explain what I mean about long-term elimination of lymphedema swelling. So there are some areas in my body, like my lower legs, where the lymphedema hasn't come back in six areas in my body, like my lower legs, where the lymphedema hasn't come back in six months, and that feels like remission to me.

Speaker 2: 18:31

Here are the standard of care practices for lymphedema. So when you go to your doctor, here's how they would traditionally treat you Complete decongestive therapy, or CDT, a combination of manual lymphatic drainage, compression therapy, exercise and skincare lymphatic drainage, compression therapy, exercise and skincare. Then there's compression therapy using garments or bandages to manage the swelling, so think compression stockings, for example. I tried those techniques with minimal results. Then I opted for the Tactile Medicals compression therapy solution. The second most important treatment I used in treating lymphedema was Tactile Medical's FlexiTouch system. The FlexiTouch system is an at-home pneumatic meaning operated by air under pressure compression device to help reduce swelling and improve lymphatic flow. It mimics the natural wave-like motion of the lymphatic system.

Speaker 2: 19:29

All of my treatments for lymphedema are natural remedies. They include exercise, which promotes lymphatic drainage and muscle pump action. I'll do some videos of the exercises that I've used, but walking is a great one. Jumping rope, riding a bicycle are all great exercises. Massage, using manual techniques, can help move lymphatic fluid from locations in your body where lymph nodes aren't functioning properly to areas where lymph nodes are working optimally. Your lymphedema specialist can give you a lymphatic massage and teach you to do it at home.

Speaker 2: 20:04

Pneumatic compression, like the Tactile Medical Flexi-Touch Plus system, and herbal remedies. Some advocate for plants like horse chestnut or butcher's root. However, in a future podcast related to this topic, I'll tell you which herbs work for me. So subscribe to our weekly newsletter and follow me on social media to be the first to know when this article and future podcast is published. But I'll share with you now that whole foods, herbal supplements and naturally boosting my glutathione levels reduced the swelling and got my lymphedema in check. These are my number one secrets to putting lymphedema into remission. I did a whole episode on glutathione, the master antioxidant, so be sure to catch that wherever you get your podcasts. No substantial evidence suggests that glutathione treats glufedema, but its role in detoxification could theoretically support overall health, but targeted studies for lymphedema are lacking. However, I leveled up my lymphedema treatment by adding glutathione therapy to my strategy. I'll tell you more in the future.

Speaker 2: 21:08

Know this lymphedema can affect anyone, regardless of age, lifestyle and socioeconomic access to treatment. There are some famous individuals with lymphedema. Catherine Houston, the actress known for Desperate Housewives, who passed away from cancer in 2012, god rest her soul suffered from lymphedema, which she discussed openly to raise awareness, and Diana Kroll, the jazz pianist. She's also noticed to suffer from lymphedema as a complication to breast cancer treatment. Lymphedema can cause ongoing inflammation due to an accumulation of proteins and other substances in the protein, which can trigger an immune response. The cycle can perpetuate chronic inflammation in affected areas. Lymphedema can also contribute to chronic fatigue in several ways. The persistent swelling and discomfort can lead to reduced activity, which can cause deconditioning and fatigue. Additionally, the inflammation associated with lymphedema might contribute to systemic effects like increased cytokine levels, which are small proteins important in cell signaling, which can lead to fatigue. Chronic conditions often overlap with fatigue syndromes, where the physical burden and psychological stress of managing a chronic illness like lymphedema can compound feelings of exhaustion.

Speaker 2: 22:29

In conclusion, my journey through the complexities of lymphedema and the subsequent experiences of medical gaslighting have been both challenging and enlightening. I've learned that resilience and self-advocacy are essential in navigating the healthcare system, or what I like to call. Actually, I got this from Mike Adams, the health ranger. He calls it the sick care system and I wholeheartedly believe that that is the case. But every individual story is unique and it's vital for medical professionals to listen with empathy and an open mind. While my body faced turmoil and transformation, I discovered the strength within myself to seek the truth and demand the care I deserve. This experience has ignited a passion in me to advocate for my own health and now to empower people just like you who are facing similar challenges to speak up and seek support. That's what makes me a wellness warrior.

Speaker 2: 23:25

Remember your voice matters. Each step, no matter how small, brings you closer to understanding ourselves and our bodies. If you find yourself in a position where your concerns are dismissed, don't lose hope. Seek out healthcare providers who will take your symptoms seriously and trust your instincts. Together, we can create a community of awareness and change, ensuring no one feels alone in their healthcare journey. Embrace your strength and continue to fight for your well-being. You deserve it.

Speaker 2: 23:55

Until next time, friends, I'm Antoinette Lee, your wellness warrior here at the New Normal Big Life podcast. I hope one day to see you on the river in the backcountry or in the horse barn living your best life. Tag new normal big life or nnblblog on social media so we can celebrate your good health and your big life. If you're a visual learner, you can watch our informative and entertaining version of this video on YouTube on the new normal big life channel, or listen wherever you get your podcasts. Share this episode with someone who needs it, comment on our posts and drop us a message or an email Nothing personal too specific. When you have a health or adventure sports topic, you want us to cover it and support others in this community.

Speaker 1: 24:38

World events are constantly teaching everyone some very painful lessons. Without warning, everything we take for granted can suddenly fail, and if you're not prepared in advance, you really don't have a chance. The fact is, the modern world runs on a just-in-time supply schedule. Even the biggest grocery stores can carry only enough food for a few days worth of normal shopping. So when disaster strikes and chaos ensues at your local stores, the odds are simply against you. If you don't have emergency food and gear stockpiled in advance, you will probably suffer.

Speaker 1: 25:13

My partner, ready Hour, is here to help you ahead of time. Ready Hour has a long history of providing calorie rich, reliable and delicious nourishment for life's unexpected situations and critical emergency gear too. They're part of a family of companies that have served millions of people like you for decades. My family and I use Ready Hour products for camping, mountaineering and disaster preparedness for five years now. They're not just reliable, they're also your affordable option too. Long-term survival food shouldn't break the bank. That's why they have great sales and payment options for you. It's your bridge to safety and survival when things just aren't normal anymore.

Speaker 1: 25:54

So make your next decision your smartest decision. Be ready for tomorrow. Today. Trust Ready Hour. Ready to shop. Use my affiliate link in the show description. Since 2012, the Health Ranger store has been answering your calls for a trustworthy, responsive and affordable source of health-focused products. Built from scratch with its own US-based fulfillment center and dedicated in-house customer support, they've got you covered, from nutritional supplements and superfoods to storable foods and preparedness gear. They offer competitive prices on top quality, lab tested items. I'm excited to partner with the Health Ranger store to bring you the purest, most reliable products out there. Ready to shop? Use my affiliate link to get started.