Major Pain

This week on the Major Pain podcast we have a special double episode with Dr. Chris Fowler, a research health scientist with his PHD in clinical psychology. In this wide-ranging discussion, he shares the current understanding of chronic pain as a biopsychosocial condition, affecting not just physical well-being but also social relationships and mental health. He describes pain as an alarm system for the body, categorized as either acute or chronic. For patients dealing with chronic pain, he discusses setting expectations in dealing with the limitations of the medical system.

Dr. Fowler's current research looks towards the future of pain management, specifically the application of virtual reality programs. This is a promising new form of distraction therapy, in which a patient's focus is moved away from their body to give temporary relief. He also discusses the shifting attitudes towards chronic pain in the medical field, with growing acceptance for the efficacy of alternative care and the importance of tending to emotional health.

Mak lived with health issues for years, but didn't realize she might have an underlying illness until Covid-19 shut down the world. A musical theater performer and dancer, Mak was accustomed to her body being in pain after strenuous use and assumed it was normal. But when the world went into lockdown and she was no longer using her body as a creative instrument, her health problems kicked into high gear. Her pain levels rose dramatically, and extreme fatigue made it difficult to get out of bed. Preliminary blood tests indicated thyroid issues and inflammatory markers, leading her doctors to suspect some type of autoimmune disease. She has started the process of meeting with specialists, but currently remains undiagnosed.

In episode 20 of the Major Pain podcast, Mak discusses starting her diagnostic journey and finally searching for answers to her mysterious symptoms. She shares how feelings of imposter syndrome complicated her ability to identify with being chronically ill, and how her relationship to her body has changed since doing so. She also discusses the difficult interconnection between chronic pain and mental health challenges, made worse by doctors blaming one upon the other.

Stacey experiences a wide variety of complex health issues that impact her daily life. Doctors have diagnosed and labeled her with many things, including autoimmune diabetes, fibromyalgia, severe anxiety with agoraphobia, bipolar disorder and schizophrenia. Living inside such a multifaceted symptom picture has been extremely challenging, especially since doctors can't explain all of her symptoms and often don't take her complaints seriously. This is particularly true of her mental health challenges, which are stigmatized to the point that finding professional help can be overwhelmingly difficult.

In episode 19 of the Major Pain podcast, Stacey bravely shares the evolution of her health journey. Around the time of her second pregnancy she was assailed by a massive shift in her mental health, saying "everything just went wrong mentally." She began hearing voices and seeing people that weren't there, and lost large chunks of time where she couldn't remember getting from one place to another. She struggled with deep depression and extreme anxiety, made worse by nonsupporting and disbelieving doctors. Stacey eventually began learning to pull herself into a better place and recover some functionality, finding adaptive tools and the strength of will to keep fighting for improvement.

This episode also features an update from Andi and Jesse about receiving Jesse's new wheelchair, a custom made chair designed for active use.

Six weeks before finishing her residency in internal medicine, Summer started experiencing bizarre neurological symptoms in her left leg. Instead of focusing on becoming a doctor she suddenly became the patient, searching for answers to her mysterious symptoms. Summer was initially misdiagnosed with multiple sclerosis, learning years later that she actually has a rare disease called neuromyelitis optica, or NMO. This is a central nervous system disorder primarily affecting the optic nerve and spinal cord.

In episode 18 of the Major Pain podcast, Summer shares what her life is like with NMO. From crowd surfing in a wheelchair to working as a primary care physician, she shares the ways in which her life has been fulfilling and joyful since adapting to her diagnosis. She also provides a uniquely valuable perspective as a doctor with a chronic illness, offering advice for how patients can effectively communicate complex information to their own physicians.

As a child, Morgan didn't realize it was unusual to be in constant pain. She thought it was normal for joints to constantly pop out of place, to be hyper sensitive to foods and environmental factors, and to experience constant dizzy spells with risk of fainting. As she got older and realized her body was different, doctors refused to take her seriously. They insisted her symptoms didn't exist, were just growing pains or were all in her head. It wasn't until she was diagnosed with Ehlers-Danlos syndrome at 18 years old that the pieces of her mysterious health issues began to fall into place. Soon she was also diagnosed with mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS). These three diseases are known as the EDS triad, and often present together for unknown reasons.

In episode 17 of the Major Pain podcast, Morgan shares what her life is like with the EDS triad. She is now 21 years old, double majoring in linguistics and comparative literature. Her trio of diseases came with many challenges, including occult tethered cord syndrome in which her spinal cord was tethered to her vertebrae, requiring surgery that resulted in cerebral spinal fluid leaks. She shares the supplements, medications and mobility aids that have helped manage her diseases, providing informative details on each syndrome. She also displays a remarkably joyful attitude towards life, refusing to let health challenges prevent her from working towards greater goals.

Imagine performing without being able to see the edges of the stage, or worrying that your eyes could rupture before the show's end. What sounds like a horrible nightmare was a reality for Sarah, a Seattle based actor living with keratoconus. This rare eye disease causes a bulging and thinning of the cornea, leading to progressively blurred vision and the danger of corneal rupture.

In this episode of the Major Pain podcast, Sarah shares her harrowing journey with keratoconus. This disease has several treatment options available, many of which Sarah explored, but the rapid deterioration of her corneas eventually required surgery in both eyes. She talks us through receiving dual cornea transplants, including the recovery and results of the surgery. She also demonstrates a lightness of spirit that guided her journey, allowing her to face these challenges with grace and acceptance, along with a bedazzled lightning bolt eye patch.

Shawna has been through more than most 29 year olds. She has diffuse scleroderma, also known as systemic sclerosis, a disease characterized by hardening of the skin and potentially life-threatening effects to internal organs. While this disease normally effects older individuals, Shawna started noticing symptoms at just 14 years old. The rapid progression of her disease was so concerning that doctors recommended she undergo a stem cell transplant (also known as a bone marrow transplant) to completely reset her immune system.

In episode 15 of the Major Pain podcast, Shawna takes us through her incredible journey with diffuse scleroderma. She discusses her initial diagnosis, trial and error with different medications, and the decline that prompted a stem cell transplant. She takes us through the entire transplant process, discussing the risks, preparation and recovery from this intense procedure. She also discusses being immunocompromised in a world stricken by Covid-19, most notably how her immunosuppressant drugs prevented the Covid vaccine from working in her body.

This week we have a community focused episode with Jesse and Andi. First they share an email from listener Morgan, and discuss the ramifications of multiple misdiagnoses when searching for answers to a mystery disease. Then they dive into Jesse's health update, including progress towards finding a diagnosis and the new challenges faced while tracking down definitive test results. They also share their fantastic experiences traveling to Tahoe, learning that traveling with a wheelchair can open up many new possibilities. They discuss visiting the Achieve Tahoe nonprofit to rent a Grit Freedom Wheelchair, an off-road chair that allowed Jesse to go for a ride in the woods, and the many other accessible sports they were introduced to on this trip. Jesse and Andi also open up about challenges they have faced in their relationship navigating the ups and downs of Jesse's health journey, and how the transition to using a wheelchair has positively changed the way they experience the present together.

Many people with chronic pain, undiagnosed disease or invisible illness run into constant barriers when seeking medical care. Doctors often don't take their symptoms seriously, or assume nothing is wrong when they can't immediately pinpoint a cause. For people dealing with dynamic illness, understanding the medical system well enough to advocate for themselves can take years of hard earned experience.

In this episode of the Major Pain podcast, registered nurse Mira gives us an insiders view of the American healthcare system, including the main problems she sees in the medical infrastructure. We discuss the many barriers people dealing with chronic illness can face including finding a helpful doctor, being denied care and the difficulty of pursuing pain relief in a system burdened by the opioid epidemic. Mira also shares her experiences working in hospice care and battling on the front lines of the Covid-19 pandemic, where witnessing death helped shape her attitude towards life.

15 years after her multiple sclerosis diagnosis, Lauren has learned to live comfortably and happily with her disease. She now conceives of MS as a friendly neighbor, something that pops by and says hello from time to time without weighing upon her daily life. Reflecting back on her diagnosis at 19 years old, it is clear that a major mental shift happened along the way that has redefined her relationship with MS.

In this episode of the Major Pain podcast, Lauren discusses her initial difficulties coming to terms with her MS diagnosis, and the healthy ways her attitude towards the disease has shifted over the years. She shares her history with ever improving MS medications, from doing shots at home that would knock her out for days, to taking pills with minimal side effects. She also shares the dynamic way in which MS has impacted her life and relationships including her recent marriage and first time pregnancy.