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Fibromyalgia Podcast®

Tami Stackelhouse

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Tired of being held prisoner in your own body? Tami Stackelhouse is an author and Master Certified Fibromyalgia Coach® who has gone from disabled to thriving. In this podcast, Tami brings together top fibromyalgia experts and advocates, creating a virtual dream team to help you take back control of your life and health. From doctors and researchers in the traditional medical setting, to coaches and providers of alternative and natural treatment options, this podcast will empower you to feel ...
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Conteúdos sobre a fibrose cística criados pelo Unidos pela Vida - Instituto Brasileiro de Atenção à Fibrose Cística, uma das 10 melhores ONGs de pequeno porte do Brasil. Acesse www.unidospelavida.org.br e conheça mais sobre o nosso trabalho. As informações aqui contidas tem cunho estritamente educacional e não pretendem substituir a consulta médica, a realização de exames ou o tratamento médico. Em caso de dúvidas fale com seu médico.
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Fly Girl with Fibro

Fly Girl with Fibro

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Life from the point of view of someone living with some invisible illnesses. Nothing major, just breaking the stigma of what illness is “supposed to look like.” Real life, no filters. Support this podcast: https://podcasters.spotify.com/pod/show/flygirlwithfibro/support
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La fibrosis quística es una enfermedad crónica y progresiva, que aparece en las primeras etapas de la infancia y que afecta a múltiples órganos del cuerpo, (como son los pulmones, intestinos, páncreas, hígado...) Esta enfermedad la provoca la producción de secreciones espesas que dan lugar a obstrucciones e infecciones Autor: InstitutoBernabeu/
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Fibro com Fibra

Fibro com Fibra

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O relacionamento com a fibromialgia pode ser um fardo bem pesado quando o portador não tem informações suficientes sobre o que é e como agir para ter um pouco de qualidade de vida e diante das pessoas que desconhecem a doença. O nosso objetivo é levar um conteudo que te ajude a melhorar seu dia a dia e te traga conforto emocional. - Instagram/ Tio Tok: @fibrocomfibraoficial - Whatsapp: (11)99787-6698 - email: fibrocomfibraoficial@gmail.com
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Spotlight on Pulmonary Fibrosis

Boehringer Ingelheim

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In this podcast series, we bring together leading physicians, patients and patient advocates from Europe and Israel to discuss topics that are important for patients with pulmonary fibrosis. Each of the episodes will address a specific topic with the overarching objective to provide support to patients throughout the different stages of their journey.
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Mind Your Fibro podcast is dedicated to fibromyalgia.Dr. Olga Pinkston, the host and board-certified rheumatologist, discusses up-to-date information about fibro, its treatment, and the biology and psychology of this condition. It covers pain science education and the current complementary and alternative methods available to improve your symptoms. Many things influence the development of fibromyalgia, trigger fibro flares, and produce other symptoms like IBS/irritable bowel syndrome, depres ...
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Es cansado ser prisionero de tu propio dolor. Soy Gina Elvira: madre de 4, bailarina de flamenco, ama de casa y tu conductora. Te presento un podcast en español sobre el mundo de la fibromialgia. Un espacio donde encontrarás apoyo, comprensión e información única sobre este tema. Dirigido también a personas que quieren cambiar su percepción y brindar más entendimiento a sus seres queridos que la padecen. Sigue mi blog! https://metocovivirconfibromialgia.tumblr.com
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Breathe In: A Cystic Fibrosis Podcast

Gunnar Esiason and the Salty Cysters

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A dynamic podcast exploring the different experiences people with cystic fibrosis may face during their lives. Gunnar Esiason joins Tiffany Rich and Lea Faraone, otherwise known as the Salty Cysters, to talk about the in's and out's of cystic fibrosis from some of the anxieties and stresses that patients face to some of the lighter sides of the disease. Breathe In: A Cystic Fibrosis Podcast aims to characterize the disease in a positive way while showcasing the challenges that people with cy ...
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WTCF! A Cystic Fibrosis Podcast

What The CF! A Cystic Fibrosis Podcast

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When our son was diagnosed with Cystic Fibrosis at six months old we were shocked and devastated. From the first moment seeing his foggy little lungs, we knew this was gonna be a rollercoaster and we weren't wrong. What the CF! was born out of a curiosity to learn more, support others, and share experiences while we navigate our own CF journey. We want to tell the stories of others and answer the FAQ's that come along with a diagnosis. We'll seek the knowledge of experts and those living wit ...
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Cystic fibrosis (CF) is one of the most prevalent global congenital disorders, affecting some 70,000 individuals worldwide and 30,000 children and adults in the United States. While clinical efforts are expanding worldwide to improve diagnostic testing and treatment approaches for this progressive lung disease, targeted therapies for CF against any specific mutation remain elusive. The Cystic Fibrosis in Focus series gathers the latest information from leading medical experts devoted to adva ...
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Pain is a common complaint in the primary care setting, and the standard of practice is to assess for the cause of the pain. Patients often present with painful symptoms of unknown etiology that cannot be defined by the degree of inflammation or damage to muscle tissue. Fibromyalgia affects an estimated 10 million people in the United States and is especially common in women. Many patients have additional symptoms including fatigue, headaches, irritable bowel syndrome, cognitive problems/mem ...
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Have you ever wondered why some people have an easier time managing their fibromyalgia than others? We all have natural strengths and weaknesses and approach life in a unique way. Managing our fibromyalgia is no different. Our personalities play a central role in how we approach life and our fibromyalgia, and research has shown that our personality…
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Everyone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation. Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about! Please follow us on social media! Please cons…
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He’s been arrested. He’s CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew’is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world’s largest LGBT synagogue. He is a deeply traditional an…
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You're probably aware of the need for more research funding to help us develop new treatments for fibromyalgia. You’re probably also aware of the lack of training most doctors have when it comes to fibromyalgia. But did you realize that the two are connected? Research not only uncovers new potential treatments but also shapes how and what medical s…
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We’re going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It’s the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there. And the food looks amazing there. I have never been to Brazil…
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So many people with cystic fibrosis have gut pain. It is often times, debilitating. Dr. Matthew DiMagno and Dr. Jorge Machicado are working to find answers to the suffering of people with CF, and others without. Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology and Hepatology at the University of Michigan. Dr. Mach…
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GLP-1 medications like Wegovy, Ozempic, and Mounjaro are all the rage right now. Originally marketed as drugs to help diabetics with insulin resistance, they were later discovered to help people lose weight. With those possibilities, GLP-1 meds are positioned to revolutionize health in the US since about two-thirds of the population is either overw…
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Maureen Electa Monte and I go ... way back! When she was an engineer, and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our first celebrity softball game. They played against law enforcement at a ballpark in St…
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Aliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA. Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it started. Aliyah launched …
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“How do you propose we help low-income individuals with CFS and fibromyalgia? Self-care and wellness are rooted in privilege, choice, fellowship, support, time, and money to invest in themselves.” So many people living with chronic illnesses are forced to navigate the issue of how best to support themselves with limited resources. While you’ll ofte…
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Canadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told that Sebastian likely didn’t have CF because he’s “not…
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A better future for health for: All of Us! Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health. The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father! The goal of All of Us is to enroll 1 million people to build one of the most diverse health …
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Exercise is one of the foundational pillars of health, but with fibromyalgia, we have extra sensitive bodies and nervous systems, and we need to be gentle. That means finding the right exercise to meet our needs can be tricky. Today, Tami is excited to introduce you to a tool helping her feel even better and that she’s recently been obsessed with: …
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Você sabe o que é contaminação cruzada, como ela acontece na fibrose cística e os principais cuidados para evitá-la? As respostas para essas e outras perguntas relacionadas ao tema você confere neste novo episódio do Conversando sobre a Fibrose Cística. Para apoiar esse e outros projetos do Unidos pela Vida, basta acessar www.unidospelavida.org.br/…
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(Please follow us wherever you get your podcasts, rate us and/or comment. Thank you) Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things. Today we’re going to tell you about the CF Trust in the United Kingdom. Belinda Cupid is the Senior Impact Advis…
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A consulta pública nº 03 do Protocolo Clínico e Diretrizes Terapêuticas (PCDT) de fibrose cística já está aberta para receber a sua contribuição até o dia 28 de fevereiro de 2024.Neste novo episódio, a fundadora e diretora executiva do Unidos pela Vida, Verônica Stasiak, trouxe mais informações sobre como participar e valorizar a sua contribuição. …
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Welcome to the final episode of our special Be a Coach series. So far, I’ve answered questions about our Certified Fibromyalgia Advisor® class and what it takes to become a Certified Fibromyalgia Coach®. Some of the topics covered in the first three parts of this special series were what a Certified Fibromyalgia Advisor® and a Certified Fibromyalgi…
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This is our third podcast with Alan Klein, the Chief Development Officer Healthwell. As a reminder Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn’t help new applicatns with their CF bills. Healthwell …
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Rest is not a luxury. It’s required for healing your mind, body, and soul. A month and a half into the new year, everything around us is about making this your best year ever. From classes to articles, social media posts, and podcast episodes, there’s so much messaging about becoming a new and better version of yourself. While growth is a good thin…
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(Please consider subscribing to our podcast and rating it. It helps us with promotion. Thank you) What a treat for all of us today. Nicholas Kelly is in the house. I've wanted him on our podcast for a while. Nick was diagnosed with CF when he was 3 months old. Nick has so many accomplishments. He earned a bachelor’s and master’s degree from Bowling…
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Welcome to episode 03 of our special Be a Coach Series. In this series, I answer questions about our Certified Fibromyalgia Advisor® class and what it takes to be a Certified Fibromyalgia Coach®. In episode one of the series, I explained what a Certified Fibromyalgia Advisor® is and what a Certified Fibromyalgia Coach® is. Episode two of the series…
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Karen McEwan’s daughter, Elana, is 20 years old. It’s been a complex journey from birth to today. Elana suffers from a rare, incurable disease called Primary Ciliary Dyskinesia (PCD). This is the first podcast that is not about cystic fibrosis specifically, although you will see the connection. It’s about chronic illness and Mom’s connecting and pa…
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Most of us with fibromyalgia have to spend a lot of physical and emotional energy teaching the people in our lives about our condition. From friends and family to doctors and coaches, it can be draining. That’s just one of the ways working with a Certified Fibromyalgia Coach® transformational. It’s invaluable to have someone in your corner who know…
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Rena Barrow has two kids with CF, Jarrod is 22 and Jahsir is 3 years old. Over the years she’s witnessed a discrepancy in care for people of color. Even after her 22 year old son was diagnosed, doctors weren't sure her newborn baby had CF, They told her, "Maybe it was sickle cell." She fought until her son Jahsir was properly diagnosed. The delay i…
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Welcome to episode 02 of our special Be a Coach Series. In this series, I answer questions about our Certified Fibromyalgia Advisor® class and what it takes to be a Certified Fibromyalgia Coach®. I cover all the basics… the who, what, when, where, why, and even the how. Don’t understand what a Certified Fibromyalgia Coach® or Adviser is? No problem…
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I am excited that all of you will get to meet Dr. Susanna McColley!!!! I was so impressed with her commitment to CF and her incredible medical and life knowledge. Dr. McColley works to promote equitable diagnosis and treatment in cystic fibrosis. As a white person, Dr. McColley talks about all that white privilege brings, and what we must remember …
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As a master Certified Fibromyalgia Coach®, author, and fibro podcaster, the questions I’m asked more than any others are: How do I get better? How do I improve my Fibromyalgia so I can get back to living the life I want to live? While those sound like simple questions, they do not have simple answers. We all have similar symptoms, what helps you fe…
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Caroline Heffernan talks to CF families about all sorts of things, employment, family support, housing issues, cross infection, fertility…you name it. Caroline talks all things CF. As someone with CF she knows what she’s talking about. She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland. Caroline, is 53 years old, a…
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Carre Callaway (Queen Kwong) tours in the U.S., U.K. and wherever her music takes her. Carre ended her tour and was in Los Angeles when we talked with her on this podcast. She talks about how music was a coping mechanism for her chaotic life. When Carre was 17 years old, a chance meeting with Trent Reznor of Nine Inch Nails, turned her life around.…
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“Taking action and being clear about what we expect does not have to be disrespectful.” - Meredith Holley It’s very common for people with invisible disabilities like fibromyalgia to experience workplace conflict and discrimination because of it. From snide remarks to outright harassment, it can feel so isolating and even make your symptoms worse. …
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We often underestimate what we can accomplish in a year. The goal can seem so massive that we think we’ll never get there and don’t even bother to try. That’s why it’s so important to hear stories of hope from people who have been where you are. There is so much you can do in a year; whether or not you go for it, the year will go by. It’s up to you…
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Minuto Fibrose Cística é um programa produzido pelo Instituto Unidos pela Vida e tem como proposta trazer, em pílulas de áudio, perguntas e respostas sobre a fibrose cística. Neste episódio trazemos a resposta para a seguinte pergunta enviada pelo nosso público: “Por que o suor de quem tem fibrose cística é mais salgado que o normal?” Quem responde…
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“You can only truly heal once you’ve accepted what's going on.” - Dr. Isabelle Amigues When you’re able to reflect on your fibromyalgia as a teacher, you stop fighting your body and put yourself in the best position to heal. Tami often describes fibromyalgia as the biggest gift life has given her. It’s a sentiment that can be difficult to understan…
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Family stories play a crucial role in shaping our beliefs about health, work, and other aspects of life. In previous episodes, we’ve talked about the way traumatic experiences can impact your health and fibromyalgia. Today, we’re taking it a step further and exploring how the traumatic events that happened to your ancestors can affect your wellbein…
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Minuto Fibrose Cística é um programa produzido pelo Instituto Unidos pela Vida e tem como proposta trazer, em pílulas de áudio, perguntas e respostas sobre a fibrose cística. Neste episódio trazemos a resposta para a seguinte pergunta enviada por uma jovem com fibrose cística: “O que é a hiponatremia, quais seus principais sintomas e como evitá-la …
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Please consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere. Dr. John Schuen is the division Chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s hospital in Grand Rapids. He is also the director of the CF care center. We’re talking to Dr. Schuen to discuss all that they have…
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For a lot of us with fibromyalgia and other chronic illnesses, working on our fitness comes in bursts. We’re told exercise is good for us, but when we go out and do what ordinary people do, it’s too much, and we crash. Then, that cycle repeats itself over and over. Tami has found a tool that helped her and many of her students and coaches to shift …
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Bernie Martin is a Writer, Creative Consultant and, most importantly, Mother of a CF Fighter. After 15 years working as a Copywriter and Creative Director in some of Ireland’s top advertising agencies, she started her own consultancy called The Salty Pen in 2018. This move was born out of a desire to have more flexibility around caring for her litt…
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Newborn Screening, do you know what it is, do you everything about it? Did you know that people of color are less likely to be diagnosed by newborn screen because in most cases, states test for common mutations, or white mutations. Newborn Screening is a public health program. This is when a dried blood spot is taken from your babies’ heel. NBS is …
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“How do you do it all?” This question came up during one of Tami’s Ask Me Anything sessions during our annual alumni retreat, and it was so good that she decided to bring it to the podcast. Before we get into the details, the short answer is Tami doesn’t do it all! At first glance, it’s easy to compare your life to what you see others doing. The pr…
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Please consider subscribing and rating our podcast. It helps us to promote. Thank you. This is a follow-up podcast about the Healthwell Foundation. Thanks again to Alan Klein, the Chief Development Officer for answering all of our questions and being transparent. They help 90 different disease groups with funding (whatever is not covered by insuran…
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(Please consider subscribing and rating our podcast. It helps us to promote. Thank you.) Israel is at war. The emotional toll on families in Israel and Palestine is unimaginable. Israeli, 43 year old Nirit Maizel is trying to live her life as best she can while her country fights against Hamas. She has cystic fibrosis, it's harder now to get medica…
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“No woman is going to get to 90 years old without having gone through menopause.” - Jeanne Andrus As women, society has trained us to be afraid of menopause. To view it as yet another trial we have to suffer through. The truth is that if you learn to accept it, menopause is a gift. And to take advantage of it, you need to support yourself through i…
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Minuto Fibrose Cística é um programa produzido pelo Instituto Unidos pela Vida e tem como proposta trazer, em pílulas de áudio, perguntas e respostas sobre a fibrose cística. Neste episódio compartilhamos mais informações e as respostas para as principais dúvidas sobre o 2º Fórum Brasileiro de Avaliação de Tecnologias em Saúde para Doenças Raras, e…
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51 year old Rory Tallon works with Cystic Fibrosis Ireland as a CF Patient Advocate as part of CFI’s member service team. Rory has CF and was recently featured in our Living with cystic fibrosis podcast volunteering for CF Ireland. In this podcast he’s talking about dating someone with CF. It happens more than people may know and he tells us why as…
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Please subscribe, comment and rate our podcast on Spotify. (You can listen on any platform). Dr. Jennifer Taylor-Cousar is an amazing woman I can’t wait to meet in person one day. She is a Board Certified Pediatric and adult pulmonologist at National Jewish Health in Colorado. She’s a rock star in the world of CF, and she’s doing incredible work ra…
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“The big rule of thumb is to do things that make you feel better.” - Dr. Izabella Wentz Adrenal dysfunction is a significant contributing factor to fibromyalgia, and over the years, we’ve never met someone with fibromyalgia who didn’t also need to heal their adrenals. For Tami, supporting her adrenals and correcting her adrenal function resulted in…
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Emily Lyons is not yet 40 years old (she's 37 years old) and is a multimillionaire. But her life has not been easy. Her story is incredible, she's actually writing a book about it. She dropped out of high school at 16 years old, worked as a nanny for a bit in Australia, modeled and now, well, she’s a multimillionaire running four companies. She was…
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Please subscribe, rate our podcast and comment. thank you. Marten De Vlieger do you know what he did or who he is? I am excited to let you know. He is an adventure and sports athlete. He’s 41 years old with CF. Marin worked with HillRom, which is now Baxter, to make the Monarch Airway Clearance System. He worked on it for 10 years. He still works w…
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“Whenever there's a lot of interest and dollars put into fibromyalgia research, patients only stand to benefit.” - Dr. Ginevra Liptan During the pandemic, a potentially game-changing research article showed us that the immune system is involved in creating fibromyalgia pain. The results of this study were remarkable and began to address one of the …
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