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…

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…

Chronic Headache and Pineal Gland Cyst, Weighing the Decision to Operate

Misty is a 43 year old massage therapist and artist with a complex medical history. Multiple motor vehicle accidents triggered a cycle of chronic pain, including a trauma induced lipoma in their low back that had to be surgically removed. Even with constant sharp pain in their right temple, their Read more…

Living with Refractory Epilepsy

Tiffany had her first seizure at 16 years old. She had gone to bed after studying for a history test, and woke up the next day on a gurney bound for the hospital. This first seizure caught her completely by surprise, and for years seemed to be some sort of Read more…

Living with a Mysterious Seizure Disorder

Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in Read more…

Living with Superior Mesenteric Artery Syndrome

A year ago, Chelyn suddenly lost the ability to keep food down. She was constantly throwing up, losing over 20 pounds in less than 5 months. Chelyn loves food, describing it as her love language, and was utterly confused by the sudden change in her body. Seeking help initially proved Read more…

Still Undiagnosed and More Confused than Ever

Jesse’s mystery illness continues to go undiagnosed, and recent liver biopsy results have plunged the situation into even murkier waters. In this episode of the Major Pain podcast he sits down with his partner Andi to discuss the evolving situation. They discuss the challenges of having an undiagnosed and elusive Read more…

Living with Friedreich’s Ataxia

When Sydni was 7 or 8 years old she started exhibiting symptoms of instability and difficulty walking. At 10 she was diagnosed with Friedreich’s ataxia (FA), a rare inherited neurodegenerative disease. Both of her parents were unknowing carriers of the disease, giving birth to two children with FA. Over time Read more…

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…

Living with Complex Regional Pain Syndrome (CRPS)

At just 16 years old, Jonelle was hit by a drunk driver and suffered a broken neck. The only reason she survived is that a friend was driving behind her and rushed to her aid, holding her head in proper alignment to open the airway that had been cut off. Read more…