Major Pain

Between sophomore and junior year of college, Cheryl's world turned upside down as she began to feel mysteriously unwell. She started losing weight at a frightening rate, getting down to 105 pounds. Her doctors refused to believe that she was ill, going so far as to call Cheryl's parents and tell them their daughter had an eating disorder and was lying about it. However, she was actually experiencing rheumatoid cachexia, a complication of rheumatoid arthritis that causes severe muscle wasting. As Cheryl continued to lose weight, her parents hired a concierge doctor to dig deeper, but even this doctor was dubious that something was medically wrong. Her disease might have continued to go undiscovered had Cheryl not contracted food poisoning, which set off a massive flare of RA, causing joints all over her body to painfully lock up. This joint pain clued her doctor to run the appropriate tests, and Cheryl finally received her diagnosis and began treatment for rheumatoid arthritis.

In episode 41 of the Major Pain podcast, Cheryl discusses how initial relief at being diagnosed with RA would turn to resignation as she came to understand the seriousness of her disease. She explains that rheumatoid arthritis is the autoimmune form of arthritis in which the body attacks the joints, very different from the more common osteoarthritis caused by general wear and tear. Since receiving her diagnosis she has been taking immunosuppressive drugs and biologics, rotating through the latter as her body adapts and renders them ineffective. She discusses the importance of therapy for coping with chronic pain and exhaustion, sharing how ACT (acceptance and commitment therapy) helped her come to terms with living in uncertainty. Cheryl has channeled her own health journey into becoming an occupational therapist, as well as supporting her community with the Arthritis Life podcast, TikTok channel and workshops aimed at passing on tips and tricks for others living with arthritic conditions. She is a passionate, knowledgeable advocate with first hand experience managing a difficult disease, and a valuable resource with many important messages to share.

Towards the end of 2020 Nic's life took a bizarre turn. He had been a healthy father who enjoyed helping others as an EMT, but suddenly found himself in the midst of his own medical trauma. He started experiencing mysterious weakness and numbness in his legs, soon finding himself unable to walk. This was accompanied by chronic pain and fatigue, and doctors were initially stumped. As his medical workup continued it was discovered he had suffered a nontraumatic spinal cord injury, but the cause remains uncertain. That means his spinal cord was damaged without external trauma. Unexpectedly, his medical workup also revealed an autoimmune disease called Sjogren's syndrome, which is completely unrelated to his mobility issues.

In episode 40 of the Major Pain podcast, Nic discusses the intense uncertainty surrounding his health and the motivations that keep him pushing for answers. His wife and kids are a huge inspiration to him, never treating him differently or thinking less of him when he started needing a wheelchair to get around. This love and support helped Nick to work through his grieving process for the life left behind, and start working towards the life ahead. He tells us about Sjogren's syndrome, in which the body's immune system attacks the salivary and tear glands. He also discusses theories as to how his spinal cord injury happened, and shares in the frustration of not having clear answers for such a fundamental change to his body. Nic has channeled his experiences navigating the world in a wheelchair into creating Disability Fails, an organization designed to shed light on the ways society is failing the disabled community. You can find them on Facebook at https://www.facebook.com/groups/1004331733693446.

For our Patreon community, find the January bonus episode here: https://www.patreon.com/posts/60751231

On the day she was born, Favor suffered an injury that would have permanent repercussions on her life. Her brachial plexus was damaged during birth, causing a condition called Erb's palsy. The brachial plexus is a network of nerves in the shoulder that carries sensory information from the spinal cord to the arms and hands. Favor's injury would severely limit the functionality of her right arm, which was almost completely paralyzed. She started physiotherapy at just 2 weeks old, and grew up believing nothing could be done to improve her condition. All of that changed when she got older and learned of a surgery that could potentially give her back some movement in her right arm.

In episode 39 of the Major Pain podcast Favor tells us about growing up with Erb's palsy, including the difficult decision to undergo surgery at 11 years old. She flew from her home of Trinidad to Canada, since there were no local specialists who performed this procedure. Immediately after surgery, even with her arm in a cast, she realized her mobility had been significantly increased. But this gift would come at the cost of chronic pain that she still experiences to this day. Now 20 years old, Favor celebrates the limited movement her right arm can achieve, especially since it has allowed her to pursue her passion of studying music. She shares valuable insight about working within limitations instead of fighting against them, and pursuing your dreams even if that pursuit looks different than you had imagined.

Andrew has struggled his entire life to understand his own mind. He developed learning disabilities as a child, and as an adult was diagnosed with mental health conditions like ADD, anxiety and depression, but the treatments proved ineffective. Dissatisfied with these diagnoses and the direction of his care, Andrew began furiously researching any avenues that might yield improvements in his quality of life. He became interested in biohacking, the process of experimenting on oneself with supplements, diet and actions aimed at bettering ones health. He also sought the help of practitioners outside the traditional medical establishment, which led him to the Amen Clinic where he was diagnosed with MTBI (mild traumatic brain injury).

In episode 38 of the Major Pain podcast, Andrew discusses re-contextualizing his entire life after being diagnosed with MTBI. At the Amen Clinic he received a SPECT brain scan (images below) which can show areas of activity or inactivity of the brain. A handful of clinics are using this technique to diagnose psychiatric conditions such as anxiety and depression, although significant controversy over the efficacy of this technique exists in the medical field. Andrew describes the multiple whacks to the head he has experienced, and how brain science is evolving to understand the cumulative effects of repeated concussion. He also shares in some of his more maverick experiments in biohacking, and reflects on the emotional journey his health has yielded.

Kelcie's life has been frustratingly intertwined with her chronic pain journey. She was originally diagnosed with palindromic rheumatism in her late teens, which would eventually progress into rheumatoid arthritis. In her late 20s she slowly began to experience mysterious widespread pain, accompanied by exhaustion and brain fog. Being diagnosed with fibromyalgia was initially an exciting development, as she finally had a name to put to her mysterious symptoms. But over time this excitement would turn to resignation, as Kelcie came to terms with this diagnosis being lifelong and incurable.

In episode 37 of the Major Pain podcast, Kelcie shares her story living with chronic pain. Since she experiences multiple simultaneous chronic pain conditions, she discusses the differing sensations and how she tells them apart. Her life is a balancing act of managing limited energy while still striving for creative productivity, and attempting to find sources of physical activity that help rather than hurt. Like many chronic pain patients, she has had extreme difficulty getting adequate prescriptions for pain management and faced repeated medical gaslighting. She is also forced to manage the emotional health challenges that arise in such a complicated situation, striving to find the best way forward through extremely unfair circumstances. Although each pain journey is unique, Kelcie speaks astutely to the universal difficulty of managing chronic pain in our current medical system.

India is a retired nurse living with a complicated collection of health conditions. She was born with hypermobile Ehlers-Danlos syndrome that went undiagnosed most of her life, and has experienced several related comorbidities including bronchiectasis. Her pain situation reached a fever pitch due to a Chiari malformation, where part of her brain bulged through an opening in her skull. This condition became severe enough to require brain surgery, and India has been experiencing chronic migraines ever since.

In episode 36 of the Major Pain podcast, India shares insights and information about her health conditions, as well as valuable experience living with chronic pain. She discusses finally getting her Ehlers-Danlos diagnosis, a missing piece of information that reframed much of her life experience, and the complicated feeling of being a mother who unknowingly passed on a genetic disease. She teaches us how migraines are much more than simple headaches, potentially causing visual, sensory and emotional disturbances. She also speaks to the potential for chronic illness to steer life onto unexpected paths, and how important it can be to grieve when desired paths are closed.

Michelle has always known that something in her body wasn't functioning correctly. Throughout her childhood she sought help from her parents and doctors, but was told over and over that her symptoms weren't real or serious. It wasn't until her late 20s that Michelle was finally diagnosed with POTS, or postural orthostatic tachycardia syndrome. This condition affects blood flow, causing inadequate blood supply to the brain and a wide variety of disabling symptoms.

In episode 35 of the Major Pain podcast, Michelle shares what it was like to grow up without medical support, and the incredible feeling of finally getting a diagnosis. She underwent a tilt-table test to measure the difference in her heart rate from lying flat to upright, during which her heart rate doubled almost immediately to the surprise of her doctors. Since receiving her diagnosis she has discovered a variety of tools and techniques to help manage this incurable condition, including an accommodating job that lets her alternate days at work and days at rest. She also shares a message for parents, on how important it is to listen to your children when they are too young to advocate for their own health.

Our December bonus episode with Jesse and Andi is now available for all listeners supporting us on Patreon. Click here to listen, or sign up to support the show for instant access.

Last week's guest Christelle is running a GoFundMe for financial support after losing her disability benefits. Click here to donate.

Eight years ago Christelle was hit by a texting driver while riding her bicycle. Her head went through the driver's windshield, fracturing her skull and causing a traumatic brain injury. Three lobes of her brain were affected, resulting in a variety of symptoms including issues communicating, emotional dysregulation and difficulty sending signals from her brain to her body. Although life would never go back to how it was before the accident, her survival and subsequent recovery have been remarkable. She was able to finish school with a masters in clinical mental health counseling, and is now working through 3000 clinical hours to be licensed as a counselor.

In episode 34 of the Major Pain podcast, Christelle shares her story of retraining body and mind after her brain injury. She discusses the changes she experienced in her mobility and personality, and the difficulty this caused with her personal relationships. She has had many incredible successes with relearning various skills and functions, but continues to live with ongoing challenges and symptoms. Christelle speaks in depth about masking, (when people with chronic conditions learn to 'mask' around other people to appear normal) and the energetic toll it can take. She also discusses neuroplasticity, experiencing first hand how the adaptability of the brain has impacted her recovery.

Achieve Tahoe is a nonprofit organization offering year-round outdoor recreation activities for people with cognitive, sensory, and physical disabilities. They offer a wide variety of accessible activities including snowsports, water skiing, hiking, archery, climbing, equestrian skills, paddle sports and sailing. Their goal is to make these activities available to people with any level of disability. The only requirement is that participants be able to breath unassisted. The experienced team at Achieve Tahoe provide individualized experiences based on each participants level of ability.

In this special episode of the Major Pain podcast we are joined by Marina from Achieve Tahoe to learn about this organization, the type of sports available, and how people can find accessible sporting opportunities across the country. She shares her own experience re-learning to ski after a spinal cord injury, and how she has seen many people build confidence and independence through high challenge sports. We hope to spread awareness of the wide variety of accessible activities available, and inspire people to get outdoors and experience nature in an active way.

Find Achieve Tahoe on their website: https://www.achievetahoe.org/

Joseph Kibler is a 32 year old actor and writer who was born HIV positive. As a baby he wasn't expected to live past 4 years old, but an experimental drug trial run by Dr. Fauci in the 80s gave him the chance to thrive. The virus altered the gray matter in Joseph's brain, causing symptoms that are functionally akin to cerebral palsy. Joseph grew up disabled, but didn't become aware of his own HIV status until he was 11 years old. His mother initially requested that Joseph keep that status secret, but over time the weight of hiding this part of himself grew. In high school Joseph finally learned the power of opening up about his HIV status when he announced it during an exercise in drama class. Since then he has become an open book, learning that visibility is a powerful form of advocacy.

In episode 32 of the Major Pain podcast, Joseph gives us a glimpse into the life of someone born with HIV. Joseph was the recipient of a special day from the Make-A-Wish Foundation, as he was believed to be critically ill. He describes the dysphoria of living when he was expected to die young, realizing as an adult it was time to start planning for the future instead of living only for the present. He pursued his dreams of being involved in film and TV, and is now featured in several national commercials with more exciting projects on the horizon.