Alexandra – Fibromyalgia Podcast®

Episode 117: Is Fibromyalgia an Autoimmune Disorder? with Dr. Ginevra

September 26, 2023

“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 most common questions about fibromyalgia – whether it is an autoimmune condition. It’s a huge question and an important one for us to keep asking because, at the end of the day, we need more research.

For this episode, Tami interviews Dr. Ginevra Liptan, fibromyalgia specialist and author of The Fibro Manual and The Fibro Food Formula. Tami and Dr. Ginevra discuss the game-changing mouse antibody study that showed the involvement of the immune system in fibromyalgia pain and the potential autoimmune component, how the study could potentially change the treatment approach for fibromyalgia, why Dr. Ginevra is hopeful for significant progress within a decade, fibromyalgia as an orphan disease that no speciality wants to claim, the relationship between antibodies and fibromyalgia symptoms, Dr. Ginevra’s hypothesis on how and why central sensitization is triggered in fibromyalgia, the complexity of the immune system and the challenges in understanding it, the misconception that inflammation is not involved in fibromyalgia, potential benefits of hyperbaric oxygen therapy for fibromyalgia and other conditions, the upcoming Stanza app which uses behavioral therapy techniques to calm the fight or flight response, Tonix pharmaceuticals’ phase three trial for a new fibromyalgia medication, exploring the possibility of transmitting fibromyalgia symptoms through blood donation, the search for effective fibromyalgia treatments, how to navigate the overwhelming and confusing nature new fibromyalgia research, the role of intuition and personal research in choosing treatment, recognizing that there is no magic bullet solution, why we advocate for combining different approaches for better results, and more.

Episode 116: Do More Making & Crafting with Jenni Grover

September 12, 2023

When we have an interest or a passion, but we’re not pursuing it, we don’t feel good.

Creativity is a vital part of wellness; for many people, it helps them manage their illness and feel better. No matter how you’re feeling, it’s important to know that staying creative and vibrant is possible.

Today, Tami welcomes Wellness Coach Jenni Grover to talk about how you can do more crafting, making, and creating. Jenni has a passion for making sure that people get to keep being themselves and expressing themselves through their creativity while also taking good care of their bodies.

In this conversation, Tami and Jenni discuss why Jenni created her ChronicBabe project, her passion for helping people feel better despite chronic illness, why she made the shift to being a wellness coach, the connection between physical and mental health and creativity, what it has been like for Jenni to adapt her life to support her love for writing without sacrificing her health, why we need to let ourselves evolve to meet our current circumstances, embracing a growth mindset, the vast difference it makes when we surround ourselves with supportive individuals from friends and family to a coach, how to getting started with accessible crafts, getting out of the comparison trap, pacing strategies and making sure you’re honoring them, tips for staying creative on low-energy days, how timers help with preventing burnout and maintaining productivity, balancing urgency and context, being intentional about taking breaks and enlisting the help of others, the empowering feeling of making conscious choices, two pacing tools Jenni loves, practical ways to get back to making things again, taking care of your brain which is your most important tool, finding balance in self-care, finding beauty in everyday life and how it can inspire creativity, what it’s like to work with Jenni as a wellness coach, and more.

Even if you’re not a crafter or a maker, Tami and Jenni’s conversation can apply to any project and fibro life in general.

Episode 115: Fibromyalgia Stories of Hope & Healing #7 (Certified Coaches)

August 29, 2023

A certified Certified Fibromyalgia Coach® is not a doctor. We can’t prescribe or diagnose, but we can help fill the gap in fibro knowledge for you and your doctors. IFC graduates have received hundreds of hours of fibromyalgia-specific training. We can teach you and your providers more about fibromyalgia and help you advocate for yourself and get better results.

Today, as we continue the seventh installment of our Stories of Hope and Healing, Tami interviews two more graduates of our Certified Fibromyalgia Coach® training program. After going through both our Certified Fibromyalgia Advisor® and Certified Fibromyalgia Coach® training programs over the last two years, Penny and Ann are nearly symptom-free.

In this episode, you’ll hear about their journeys and how they got where they are today. They are sharing Penny’s two-year journey to becoming almost symptom-free, the huge difference it made to work with the right providers, her experience going through early menopause as a result of a hysterectomy, how she finally got to the root causes of her pain, recognizing that each person’s fibro treatment recipe is unique, why becoming a Certified Fibromyalgia Coach® has been so rewarding for Penny, the challenges of navigating medical systems, the positive ripples of working on our fibromyalgia, the massive changes in Ann’s personal life since starting the Certified Fibromyalgia Advisor® program, why she feels like she’s finally come full circle, the changes which have made the most significant positive impact on Ann’s fibromyalgia, how helping other people as a fibromyalgia coach has been helpful for Ann on her fibro journey, some of her favourite things to recommend to her clients, Ann’s message for anyone struggling with fibromyalgia, how a fibromyalgia coach can help you on your journey, what it looks like to work with a Certified Fibromyalgia Coach®, and more.

Episode 114: Fibromyalgia Stories of Hope & Healing #7 (Certified Advisors)

August 15, 2023

For many of us, the fibromyalgia diagnosis left us feeling like, “Who am I now?”

Fibromyalgia changes how we see ourselves, relate with others, and interact in our lives.

What if you could significantly improve your quality of life? Or have the energy to do the things you love? Or to travel and enjoy yourself?

Today is the seventh installment of our Stories of Hope and Healing. Tami interviews five recent graduates of the Certified Fibromyalgia Advisor® program, and they share their journeys from pre-diagnosis to where they are now after graduation. One graduate even improved by 87%, going from the most symptomatic student in class to being essentially symptom-free today.

In this episode, you’ll hear how Lisa’s fibromyalgia diagnosis led to an existential crisis and feelings of being spiritually unmoored, how her coach, Robin, helped to support her healing journey and build her healthcare team, celebrating the little wins with a “ta-da” list, the various approaches that contributed to Lisa’s 63% improvement in her fibromyalgia impact questionnaire score, the recognition that healing requires energy, resources to learn more about low-dose naltrexone, Lisa’s message for anyone dealing with a spiritual crisis, Kim’s post-diagnosis struggle with improving her symptoms after recognizing that the FDA-approved drugs were not a good fit for her, learning how to listen to what your body needs, how Kim’s coach, Robin, helped her to tune into your body’s voice, getting honest with yourself about the impact that fibromyalgia has on your life, how Kim used the tools she learned in class and her healthcare team to get through a recent significant fibro flare, the holistic changes that helped Kim improve her symptoms by 46%, recognizing the significance of an individual approach to symptom management, the far-reaching positive impact we can make by sharing what we know, the significant changes Connie has felt since going through the Certified Fibromyalgia Advisor® program and improving her symptoms by 87%, how Connie’s coach, Brenda, helped her in numerous ways throughout her healing journey, Connie’s thyroid health, the huge difference that finding the right diet has made for Connie, Susan’s experience of trying various integrative and regular doctors, diets, and treatments, the frustration of not finding a solution until discovering the Certified Fibromyalgia Advisor® program, how Susan’s symptoms impacted her career as a kindergarten teacher, techniques and strategies that helped to improve Susan’s quality of life, the ways that her coach helped with implementing the new strategies, giving yourself permission to take care of yourself without guilt, staying on top of your pain, Lauren’s deep dive into fibromyalgia resources right after her diagnosis, deciding to work with her coach, Julie, early in her journey and the impact she’s had on Lauren’s fibromyalgia journey, why coaching has been Tami’s secret weapon in managing her fibromyalgia, how you can join the next Certified Fibromyalgia Advisor® class, and more.

If you’ve been looking for new ideas on your fibromyalgia healing journey, you’ll definitely find some in today’s episode.

Episode 113: Help Your Doctor Help You with Dr. Ginevra Liptan

August 1, 2023

As patients, we must take control of some aspects of our health care to get what we need.

Many fibromyalgia patients are familiar with the feeling that we know more about fibromyalgia than our healthcare providers do. How can you get help from someone who knows less about your condition than you? When you combine that feeling with the broken healthcare system in the US and things like fibro fog, many of us leave our appointments feeling like we’re no better off than when we went in.

Today’s episode is a segment from our July Fibromyalgia Stories of Hope and Healing event featuring our special guest commencement speaker, Dr. Ginevra Liptan. In her speech, Dr. Ginevra breaks down the three main friction points and how you, as a patient, can help overcome them and help your doctor to help you.

Dr. Ginevra discusses the knowledge gap between healthcare providers and patients and how it impacts fibromyalgia treatment, challenges of the fragmented and struggling US healthcare system, how fibro fog and other fibro factors affect the patient-doctor interaction, how resources like The FibroManual can help you bring the correct information to your provider, taking a curious, collaborative approach to your relationship with your healthcare provider, Dr. Ginevra’s tips for getting around the fragmented and siloed healthcare system, why you might want to request an extended appointment, the benefits of telemedicine especially for fibromyalgia patients, how you can maximize your appointment time regardless of fibro fog, why you should consider tracking your symptoms, taking control of certain aspects of your healthcare to ensure you receive the necessary support and treatment, and more.

In addition to these tips, studies have shown that the more you work with a coach, the better your results will be. A Certified Fibromyalgia Coach® can help you prepare for your doctor visits and implement what your doctor has asked you to do. You don’t have to take this journey alone.

Episode 112: Becoming an Empowered Patient with Gisèle McDiarmid

July 18, 2023

Having been through the Western medical system for 20 years without meaningful change, Gisèle McDiarmid decided to take her health into her own hands. She felt the need to explore further and find specialists who knew about invisible illnesses, and she finally received a diagnosis and the help she needed to rebuild her health.

With that, she finally had enough energy to focus on empowering herself to maintain her health and well-being as much as possible without invasive interventions. That’s when she learned about the International Fibromyalgia Coaching Institute (IFC) and our Certified Fibromyalgia Advisor® program.

Today Tami welcomes Certified Fibromyalgia Coach® Gisèle McDiarmid to share her experience in our training programs. In this conversation, Gisèle and Tami discuss Gisèle’s journey with fibromyalgia, multiple chemical sensitivities, and chronic fatigue syndrome, the struggle to find the right treatments and support, the importance of self-care and learning to prioritize your own wellbeing, the benefits of working with a coach, how Gisèle discovered the IFC and her decision to become a Certified Fibromyalgia Coach®, empowering yourself with knowledge and communication tools for doctors, the ins and outs of fibromyalgia, its symptoms, and management strategies, how having a support group can make a huge difference in your quality of life, what made the program pandemic-proof, how self-care benefits us and those around us, benefits of becoming a Certified Fibromyalgia Coach®, two of Gisèle’s client success stories with breast implant illness and long COVID, the value of having a coach that truly understands the experiences and challenges faced by fibromyalgia patients, recognizing that it is possible to have a better quality of life if you’re committed to taking better care of yourself, and more.

For both Tami and Gisèle, being a coach has been their secret weapon in managing their fibromyalgia and helping others. No matter where you are now, don’t give up. You can find the right tools and support to manage your symptoms and improve your quality of life.

Episode 111: Understanding Insurance Coverage w/ Dr. Chelsea Liebowitz

July 4, 2023

As coaches, we get a lot of questions from people trying to understand their insurance coverage. From prior authorizations to deductibles, coinsurance, and patient assistance, many moving parts need to align to maximize our healthcare benefits.

To help gain some clarity around all things insurance, Tami is joined by Doctor of Pharmacy Dr. Chelsea Liebowitz. A pain patient herself, Dr. Chelsea also works for an insurance company making determinations on prior authorizations and helping with self-funded plans.

In this conversation, Dr. Chelsea and Tami discuss her pharmacy background, understanding the open enrollment period, defining common insurance terms such as deductible and copay, the relationship between your premium and your deductible, recognizing that the best plan really depends on how you utilize healthcare, differentiating between an HMO and a PPO and why a PPO is often better for someone with chronic illness, why insurance plans vary widely from one employer or individual to another, how to find out if your medications and treatments are covered when choosing your insurance, when a secondary insurance plan can be helpful, understanding drug tiers and how copay cards work, applying to a drug manufacturer for patient assistance, why you might need prior authorization for certain medications, getting insurance on the exchange, the benefits of working with an insurance broker, the prior authorization process, how you can increase your odds of having certain medications and procedures approved by your insurance company, Dr. Chelsea’s advice for reducing your headache woes, options to consider when insurance doesn’t cover your medication, and more.

While this discussion focuses on the US healthcare system, many of the ideas and concepts apply to other countries and healthcare options. If you’re confused and overwhelmed by all the insurance options, this episode is for you.

Episode 110: New Medications for Fibromyalgia w/ Dr. Seth Lederman: Ask the Coach

June 20, 2023

One of the questions Tami gets most often is, “When are we going to have new fibromyalgia treatment options?” With only three FDA-approved fibromyalgia medications, many of us are on the alert for new options to address our symptoms better.

To answer that question, Tami invited Dr. Seth Lederman, CEO and founder of Tonix, to talk about the fibromyalgia medication currently in phase three trials, TNX-102 SL. Dr. Lederman has dedicated his career to fibromyalgia research and has worked on this drug for almost 25 years. Today he’s sharing all the details about how TNX-102 SL could help fibromyalgia patients and walking us through the process of developing a new medication.

In this conversation, Tami and Dr. Lederman talk about the process of creating a new medication and the FDA approval process, the significant challenges in the medication creation process, TNX-102 SL – the new fibromyalgia medication Dr. Lederman has been working on for almost 25 years, how TNX-102 SL is different and improved over Flexeril, the importance of improving sleep quality for fibromyalgia patients, the benefits of improved sleep quality, unrefreshing sleep in fibromyalgia patients and how it relates to the pain perception system, the current phase three trial of TNX-102 SL and how you can find out more, next steps after the successful completion the current study, preliminary results showing the positive effects of TNX-102 SL on the quality of life of fibromyalgia patients, the overlap between long COVID and fibromyalgia, the varied factors that can lead to the development of fibromyalgia, a new drug under development for depression that could also have activity in fibromyalgia, positive progress in fibromyalgia research and treatment, Dr. Lederman’s message for you, and more.

Episode 109: Multiple Chemical Sensitivity: When Typical Treatments Fail with Gisèle McDiarmid

May 22, 2023

With the lack of awareness and education about fibromyalgia, many of us go through years of chronic health issues without finding answers. You might even find that the medications, supplements, and treatments that are supposed to help you to get better are making you worse.

Today’s guest, Gisèle McDiarmid, went through all of that, and today she’s sharing what she uncovered that made all the difference. While her health deteriorated over 20 years, Gisèle received multiple diagnoses and treatment options, but nothing worked. So what do you do when everything makes you feel worse?

In this conversation, Gisèle and Tami talk about Gisèle’s life as a nurse, mother, and caregiver, managing her Hashimoto’s diagnosis, her deteriorating health and experience with injuries, chronic infections and allergic reactions, severe reactions to flu shots and what she learned about her ability to tolerate vaccines, why fibromyalgia awareness and education are so important, Gisèle’s health crash which turned out to be a massive fibro flare, the long journey to receiving her fibromyalgia diagnosis, her struggles with conventional medications and natural treatments, unlearning her disconnected body mindset, the power of tuning in and recognizing that you and your body are on the same side, learning about multiple chemical and environmental sensitivity, common triggers of multiple chemical sensitivity (MCS), why we need to become aware of our individual body burdens and all the things we’re exposed to, the increase in MCS diagnosis worldwide, why green initiatives matter, resources you can use if you think you may have MCS, Gisèle’s message for you, and more.

If it feels like nothing is working for you, Gisèle and Tami hope that her story gives you some new ideas of things to try. Always remember that it doesn’t matter if other people don’t believe you as long as you know what you’re going through is real. Even when we have a chronic illness, our life isn’t over. Gisèle went from a crisis to living a full life again, and you can do it too.

Episode 108: Invisible: The Documentary That Makes Fibromyalgia Visible with Director Nick Demos

May 9, 2023

Everyone with fibromyalgia understands how challenging it can be to explain the invisible pain and fatigue that comes with it. Despite affecting millions of people, there’s still a lack of understanding and awareness about fibromyalgia. That’s where the documentary “Invisible” comes in.

Through personal stories and expert interviews, “Invisible” explores the impact of fibromyalgia on people’s lives and the challenges caused by the lack of understanding and research. For today’s episode, filmmaker Nick Demos joins Tami to discuss his feature documentary on fibromyalgia, Invisible. Nick and Tami have been waiting to do this interview ever since they began working on the film eight years ago. Not wanting to give away the ending before people could watch, a lot had to be kept secret during the production process. Now, they finally get to talk about it publicly.

In this conversation, Nick and Tami talk about how Nick became involved with the making of Invisible, its evolution into a documentary about the fibromyalgia community, challenges with finding men when casting the film, how the perception of fibro as a woman’s disease has contributed to the lack of research and understanding, the difficulty balancing creating a piece of art with making a film that would educate and inspire action, Nick’s on-camera life-changing diagnosis, the unfairness of being discriminated against for something outside your control, why this film is vital to the fibro community, Tami’s experience being a part of the film, why it was especially tricky to visually explore stories about an invisible illness, why community is essential, why Tami and Nick consider some aspects of fibromyalgia as a gift, what most surprised Nick while making the film, the truth behind the lack of research on fibromyalgia, upcoming premiere events, how Nick manages his fibromyalgia, Nick’s message for you, and more.

Invisible is the film that the fibro community has wanted and needed, and we know you’ll love it.