Psoriatic Disease, Small Fiber Neuropathy and More: Angela’s Diagnostic Odyssey

09/04/24 • 97 min

When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a years-long diagnostic odyssey that would see Angela diagnosed with several chronic illness including psoriatic arthritis, psoriasis, small fiber neuropathy, hypermobility and more. That burning in her legs was nerve pain caused by small fiber neuropathy. Discussing this disease, Angela says she has a "special place in my heart for that little monster, it helped me get diagnosed with everything else." In this episode of the Major Pain podcast, Angela educates us on psoriatic disease (psoriasis and psoriatic arthritis) while also recounting her diagnostic journey. The quest to diagnose her multiple chronic symptoms involved horrific medical gaslighting, misdiagnoses and mistreatment. But it also highlights the wonder of finding the right doctor, when she found a neurologist willing to also order rheumatology labs when Angela's own rheumatologist refused to do so. Throughout this process Angela felt internal and external pressure to hide her pain and continue to push through. She discusses the importance of being kind to yourself, self-advocacy and seeking community around chronic illness. PlayWatch the episode on YouTube, or listen on all major podcasting platforms.

Previous Episode

Classical EDS, MCAS, POTS, Fibro and More: Maureen’s Complex Journey

Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges. Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndrome (POTS), fibromyalgia and more. She is currently being evaluated for Charcot-Marie-Tooth (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system. In this episode of the Major Pain podcast, Maureen talks us through her health journey so far. Her journey ranges from a spondylolisthesis (spinal vertebra slipping out of place) and a back brace throughout senior year of high school, to years long issues with upper respiratory problems, to a recent brain surgery for hydrocephalus (accumulation of fluid in the brain) and even endometriosis. Maureen now has a shunt surgically implanted in her brain that drains fluid to her stomach. She tells us about going to the Ehlers-Danlos Clinic at the Mayo Clinic, where she learned about the crossover between EDS and fibromyalgia. Through it all, Maureen has cultivated a wealth of knowledge about navigating the medical system, and an incredible attitude of acceptance and perseverance. PlayWatch the podcast on YouTube, or listen on all major podcasting platforms.

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Are Scoliosis, Kyphosis and EDS Connected? Billie’s Twisty Tale

In 5th grade Billie's classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person's spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was bent 53 degrees on top and 38 degrees on bottom and she also developed kyphosis, an excessive rounding of the upper back. These two conditions were so severe that Billie's internal organs were being crushed, forcing her diaphragm upwards into her rib cage and compressing her heart. She was in constant pain and began struggling to breathe. In this episode of the Major Pain podcast Billie (known online as BillieBillieB AKA 'The Pyrex Lady') talks us through her history with scoliosis and kyphosis, including a posterior spinal fusion at 17 years old. Two nine inch rods and 14 screws were surgically installed to straighten her spine, eliminating the kyphosis and improving her spinal curvature from 53 and 38 to 17 and 11. She went under anesthesia at the height of 4'10" and woke up 5'1". Standing up after surgery was the first time in her whole life that she stood eye to eye with her mother. Billie discusses the possibility that her scoliosis may be co-morbid with a connective tissue disease called Ehlers-Danlos syndrome. She has always been hypermobile and extremely flexible, and has begun to wonder if a connective tissue disease could explain why her spine developed with such extreme curves. Now that she has undergone spinal fusion, she remains extra flexible everywhere except her spine. Moving forward she will continue to pursue answers regarding EDS, hoping to piece together an inclusive picture of her health journey. Connect with Billie online: https://billiebillieb.carrd.co/ PlayWatch the episode on YouTube, or listen on all major podcasting platforms.