Major Pain

Aimée has been experiencing chronic pain and increasingly debilitating neurological symptoms throughout her life. She was first diagnosed with fibromyalgia at just 12 years old, at a time when that diagnosis carried little to no actionable recourse and significant stigma. Due to a lack of helpful doctors in the face of progressing symptoms, she took it upon herself to learn as much as she could about medicine and healthcare in the hopes of finding her own answers. She sought help from every source she could find, including a private doctor who's practice took no insurance and charged out of pocket for every test. That doctor diagnosed her with a laundry list of conditions, but admitted to Aimée that he was out of his area of expertise and had no idea what she should do next.

In episode 31 of the Major Pain podcast, Aimée shares her medical journey and some of the knowledge she has gleaned along the way about the American healthcare system. Over time she has been diagnosed with fibromyalgia, Lyme disease with associated co-infections, Epstein-Barr virus, chronic pneumonia, chronic strep, narcolepsy with cataplexy and Ehlers-Danlos Syndrome. However, her various doctors have disagreed over some of these diagnoses, and she is still fighting to be taken seriously and receive the care she deserves. Even with genetic testing that clearly indicates Ehlers-Danlos, finding a doctor willing to help manage her symptoms has proven elusive. She shares the deep frustration of experiencing medical gaslighting from a variety of sources, while also expressing empathy for doctors who's hands are tied by healthcare rationing. Through all the ups and downs she has experienced, Aimée's deep desire to find answers for herself and her children pushes her to keep fighting.

Our fist bonus episode of Major Pain featuring Jesse and Andi is now available to all listeners supporting the show on Patreon! Sign up at any support tier to gain instant access. Find the bonus episode at this link: https://www.patreon.com/posts/58226393

Chris Stigas is an entrepreneur and accessibility activist. His first accessibility product, the HandiCup, fills the need for a simple, effective solution for carrying a beverage on a wheelchair or walker. He is the recipient of the 2020 Patti Dawson Activist of the Year Award for his work with Spinal Cord Injury Ontario, advocating and educating on behalf of his community. Chris never set out to become an accessibility product designer and activist, but feels gratitude for the life he finds himself living after his own spinal cord injury.

In this episode of the Major Pain podcast, Chris shares the story of how one bad fall changed his entire life. His spinal cord was bruised after an accidental slip into the bathtub, where he would remain unable to move for 15 hours before being discovered and rushed to emergency surgery. He was told he'd never again speak, move his arms or eat solid foods, all things he has now retrained his body to do. He shares with us how keeping busy and learning to approach life with gratitude helped him find contentedness where he never thought possible, and discusses improving the world for the next generation of wheelchair users.

Chris has created a 15% off discount code for any podcast listeners who want to purchase a HandiCup. Head to https://handicup.com/ and use the code MAJORPAIN15 at checkout.

Jimmy and Charles met when they were 18 and 19 years old, just a few years after Charles had been diagnosed with idiopathic ventricular tachycardia (IVT). At 13 he underwent surgery to implant a pacemaker, which regulates his heart rate during IVT episodes when his heart beats chaotically. Charles was initially nervous to disclose this information to his new romantic partner, but Jimmy's effortless acceptance would become a hallmark of their eventual marriage.

In this episode of the Major Pain podcast, Jimmy and Charles discuss how IVT has interwoven with their lives and relationship. They are both Seattle based dancers and performing artists, and IVT presents unique challenges for a career based on physical movement. Charles discusses some of the limitations and considerations of walking though the world with a pacemaker, as well as sharing his love for swimming and how he would not let this diagnosis keep him out of the water. Jimmy and Charles also speak to the role of faith and spirituality in their lives, examining whether or not they were "meant to be here," and the purpose they have found in living with that question.

Brooke has been diagnosed with over a dozen health conditions. Her diagnostic journey began with relatively manageable diseases including asthma, type 1 diabetes, rheumatoid arthritis and Hashimoto's disease, but took an intense turn in her late 30s when she experienced heart failure, discovered an adrenal tumor, was diagnosed with diabetes insipidus, POTS, mast cell activation syndrome and gastroparesis, all before discovering her adrenal tumor was cancerous. After surgery to remove this tumor, she was also diagnosed with adrenal insufficiency and Graves' disease, and is now examining the possibility that she has kidney cancer.

In this episode of the Major Pain podcast, Brooke shares the incredible story of her many diagnoses and treatments, teaching us about multiple rare diseases in the process. She discusses the difficulty in communicating her many diagnoses to doctors and friends, since most people are unwilling to hear or believe her lived experience. She is passionate about making invisible illness visible, sharing what she has learned navigating not just the medical system but also the disability application process. Brooke also shares her coping mechanisms, and thoughts on living in the moment vs. thinking about the future.

Elias has a trio of chronic pain syndromes, ankylosing spondylitis, Crohn's disease and fibromyalgia. Ankylosing spondylitis is the least well-known of these conditions, and involves a cycle of inflammation, calcification, scarring and bone formation that can actually fuse vertebrae together over time. Crohn's disease is a form of inflammatory bowel syndrome, and of course fibromyalgia refers to widespread chronic pain, so Elias is in a very complex pain situation.

In this episode of the Major Pain podcast, Elias discusses living with their multiple health conditions. They rely on their service dog and family for emotional and physical support, as well as mobility aids such as forearm crutches and a wheelchair. Elias refers to themself as being 'professionally disabled,' but enjoys crafting and other forms of distraction therapy that provide comfort and meaning in their routine. They discuss having a largely invisible illness, and how difficult it can be to get care when doctors can't see the problem. They share information about each of their diseases, as well as tales of receiving their multiple diagnoses and how their life has been impacted.

Nolan had been living with unexplained exhaustion for years before their health flare-up kicked into high gear. Suddenly they were experiencing seizures, weakness, gait issues and vocal/motor ticks. When seeking answers from doctors they were often brushed off, having the reality of their symptoms denied when answers were not immediately apparent. It wasn't until they switched hospitals to seek care at the University of Washington Medical Center that they were finally taken seriously, eventually being diagnosed with functional neurological disorder (FND).

In this episode of the Major Pain podcast, Nolan shares their health journey with FND. This is a new diagnosis applied to patients who experience neurological symptoms when no structural issue can be found. Nolan likens it to a software problem, as opposed to a hardware issue like lesions or tumors that would be visible on an MRI. For Nolan, finding a diagnosis has been a life changing event. They finally have doctors that take them seriously, and several treatment options to pursue. They discuss their comorbidities of gastroparesis and urinary retention, as well as their history of physical, emotional and medical trauma that may contribute to the onset of FND. Nolan also discusses the changing understanding of FND, having once been referred to as conversion disorder before recent advances have progressed the understanding of this complicated disease.

Frankie's life has changed dramatically since developing nonspecific interstitial pneumonia (NSIP). She has the fibrotic form of the disease which causes permanent scarring of the lung tissue, making it harder to get oxygen into her lungs. Describing how it has changed her life she says, "I never sat still. And now...if you don't sit still, you can't breathe." Frankie also has mixed connective tissue disease, which often presents alongside nonspecific interstitial pneumonia. That means she is dealing with multiple autoimmune symptoms alongside her lung fibrosis.

In this episode of the Major Pain podcast, Frankie shares the story of her health journey. She discusses becoming medically disabled after a back injury, years before entering respiratory failure and discovering she has NSIP. As health challenges compounded upon themselves, she also faced constant pushback from doctors. Since her disease is rare, some doctors are unfamiliar with it and therefore unwilling to acknowledge or treat it. This made it needlessly difficult for her to get care, adding anxiety to an already stressful situation. Still, her fighting spirit and positive attitude shine through as she gives us a glimpse into life with her disease.

At 11 years old, it was common for Emily to play in the grassy field of the buffalo farm where she grew up. One day she was bitten by a tick, developing a bullseye rash around the bite. Within weeks she developed a severe fever and hallucinations, but unfortunately the connection between her mysterious symptoms and the tick bite was not made. Emily spent the next 20 years dealing with an increasingly debilitating illness. She suffered from short term memory loss, seizure-like episodes, an inability to control the muscles in her face, difficulty reading and writing, and eventually required a wheelchair. Lyme disease finally came onto her radar by chance, and it was a whirlwind of emotion to finally find and confirm a diagnosis. It took five years of rigorous treatment, but Emily is now in remission and experiencing life in a whole new way.

In this episode of the Major Pain podcast, Emily shares her harrowing journey through constant illness and the elation at finally finding answers. She recounts the many times she was doubted by doctors, misdiagnosed or denied proper care, compounding emotional trauma on top of the physical challenges of her disease. Her intense treatment included intravenous antibiotics and the use of a hyperbaric oxygen chamber, the latter of which still offers relief to this day. She also shares a message of hope to those still searching for answers to their own mystery illness, to keep fighting for a diagnosis in the face of an unyielding medical system.

Many people don't understand the severity of crippling social anxiety, and how it can prevent individuals from seeking experiences that might involve social interaction. People don't just experience anxiety in social settings, but before and after those interactions as well. This anxiety manifests as fear of being watched, judged and ostracized, and can exhaust emotional and mental bandwidth very quickly. Laura has lived with that fear her entire life, and felt the effects of how it limited her activities over and over again. In her 30s she decided to face that fear head on, learning invaluable tools that have helped to lessen her anxiety and increase her social bandwidth.

In episode 23 of the Major Pain podcast, Laura walks us through what she has learned about overcoming social anxiety. Through research and therapy she has collected a variety of helpful tools, including examining core beliefs, controlled exposure to triggering situations, and regulating the nervous system to lower stress levels. She walks us through her journey over the past several years applying these tools to her life, and shares the milestones of success achieved along the way.

Many people suffer from seasonal allergies, or have experienced some form of environmental sensitivity in their lives. But for Elizabeth, navigating the world with histamine intolerance means she must be constantly vigilant about the foods and environments she is exposed to. Histamine intolerance sounds like a sensitivity to histamine, but it actually refers to a buildup of histamine when the body is not able to process it correctly. This condition is very rare, affecting less than 3% of the population, and is often misdiagnosed as allergies or gastrointestinal disease.

In this episode of the Major Pain podcast, Elizabeth shares her medical journey from childhood as she sought to understand why she was constantly sick, to adulthood as she gained understanding of histamine intolerance and how it affects her body. She struggled to make sense of the changing parameters applied to her test results over the years, finding herself denied treatment for not fitting into medical models. Experiencing a lack of help from doctors, she applied the scientific method to her own body, discovering foods and environments to avoid through trial and error. Having learned many tips and tricks along the way, she shares ideas for anyone dealing with similar health concerns to consider. She also discusses the concept of disability, and how each person's journey to identifying with that term is unique.