ehlers-danlos Archives

Major Pain Podcast Episodes

Christine’s Mysterious Chronic Pain: Searching for the Underlying Cause

Christine has been experiencing mysterious chronic pain since she was a teenager. It feels like her joints are grinding across each other, occasionally locking up so she cannot move. A few years ago her hip locked up in the middle of the night so she went to the emergency room. Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 9 monthsAugust 2, 2023 ago

Major Pain Podcast Episodes

The Infuriating Contradictions of Undiagnosed Illness

Courtney refers to herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis to her mystery illness, but none of these providers have been willing to keep digging until an answer is found. She used to be an avid globe trotter while working Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 1 yearApril 19, 2023 ago

Major Pain Podcast Episodes

Bekah’s Chronic Illness Was Misdiagnosed As Anxiety for Years

Bekah’s mysterious illness kicked into full gear when they were 14 years old. While cooking food one day they suddenly became extremely hot, fell to the floor and realized they were too weak to get back up. They were overcome by strange neurological sensations, feeling like their arm didn’t belong Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 1 yearJanuary 4, 2023 ago

Major Pain Podcast Episodes

Living with Multi-Generational Ehlers-Danlos Syndrome

Kenneth’s family has a multi-generational history with Ehlers-Danlos syndrome (EDS). Family members with the disease include his mother, uncle, grandmother and great grandmother. Kenneth was diagnosed at just 2 years old while being examined for a knee injury. A trauma caused massive swelling in his knee, producing a hematoma the Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 1 yearNovember 2, 2022 ago

Major Pain Podcast Episodes

Living with POTS, HEDS, Rapid Gastric Emptying and More

Katherine has been chronically ill her whole life, but didn’t realize it until the situation became debilitating in college. She was always a flexible kid, able to twist, contort and bend in all sorts of unusual ways. In high school she started experiencing chest pain and heart palpitations, but was Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsJune 22, 2022 ago

Major Pain Podcast Episodes

Finally Diagnosed: Her Genetic Condition Hid in Plain Sight for Decades

When Ashley scheduled an interview for the Major Pain podcast to discuss her chronic illness, she was prepared to talk about living with an undiagnosed disease. But to her shock, just weeks before recording her interview, a rheumatologist officially confirmed a diagnosis. Ashley found herself looking back on her life Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsMay 25, 2022 ago

Major Pain Podcast Episodes

Living with Two Invisible Conditions: Hypermobile Ehlers-Danlos (HEDS) and Autism

Brandy grew up knowing she was different. She struggled both socially and physically, having problems picking up social cues while constantly experiencing injuries and joint dislocations. When seeking help she was disbelieved, shrugged off, or accused of drug seeking behavior. Brandy tried to push through and be strong, but her Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsApril 27, 2022 ago

Major Pain Podcast Episodes

Caitlin’s Chronic Illness Puzzle: POTS, Spondylolisthesis, Hypermobility, FND and More

Many children beg their parents for a pony, but Caitlin actually made that dream a reality. She wasn’t allowed to have a pony until proving she could afford one and look after it by herself, so as a teenager she bought one in secret, finally informing her parents 10 months Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsApril 20, 2022 ago

Major Pain Podcast Episodes

Living with POTS and EDS

Zoe’s life changed dramatically at the beginning of 2021. In rapid succession she contracted Covid-19, suffered a concussion, and came down with mono. These three major stressors on her body caused a massive flare of chronic pain, functional difficulty and POTS symptoms (postural orthostatic tachycardia syndrome). At first her doctors Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsJanuary 26, 2022 ago

Major Pain Podcast Episodes

Living with Chronic Migraines, Ehlers-Danlos Syndrome and More

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 Read more…

Podcast: Play in new window | Download

By Major Pain Podcast, 2 yearsDecember 8, 2021 ago