chronic pain

Living with Systemic Juvenile Idiopathic Arthritis, AKA Still’s Disease

While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Ali DiGiacomo On Spoonies Being Accused of Using Illness for Likes and Views

A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called ‘Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes – as experts raise concerns Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Demystifying Functional Neurological Disorder: Sydney’s Story

Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney’s symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Kyle Ayers on Turning His ‘Suicide Disease’ Into Stand-Up Comedy

Kyle Ayers is a well-known comedian, famous for his podcast ‘Never Seen It‘ in which comedians re-write a scene from a show or movie they’ve never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Rho’s Chronic Illness Journey: “It’s Been A Long Difficult Fight”

Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

LoveWarriorHugs on Living With Five Chronic Illnesses

Jamie is a social media chronic illness advocate under the handle @LoveWarriorHugs, but her advocacy extends beyond social media. She is an epilepsy ambassador with the National Epilepsy Foundation, and she’s also been involved in successfully lobbying to change pain management laws in Illinois. Her passion for advocacy stems from Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Kait’s Journey with Miserable Malalignment Syndrome

Kait lives with miserable malalignment syndrome, which means that the bones in her legs are rotated abnormally. Since childhood her femurs were pointed inwards while her tibias rotated outwards, causing her knees to face each other. Even though this rotation was plainly visible to the naked eye, it still took Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Managing Somatic Symptom Disorder Inside a Multitude of Chronic Illnesses

Colby has 11 chronic illness and mental health diagnoses. These include chronic pain (currently diagnosed as fibromyalgia), PCOS (polycystic ovarian syndrome), asthma, IBS, eczema, PTSD, depression, anxiety, bipolar, ADHD and somatic symptom disorder. That last diagnosis might be the least well-known of Colby’s illnesses. According to psychiatry.org, “somatic symptom disorder Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

The Testing Is Not Definitive – Cassie’s Pain Journey

Cassie sums up her chronic pain situation by saying, “we know there’s something wrong but we can’t put a name to it because the testing is not definitive.” She experiences chronic joint pain, chronic fatigue, brain fog and arthritic damage with no evidence of inflammation on her imaging. Doctors have Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago

Serena’s Duo of Severe Chronic Pain Conditions

Serena has gone to great lengths to uncover the cause of their severe chronic pain. Like many chronic illness patients, they have run into barrier after barrier when seeking care. Serena lives in Tennessee and has been denied for health insurance 5 times. They have also been denied 3 times Read more…

Podcast: Play in new window | Download

Subscribe: Apple Podcasts | Spotify | Amazon Music | Email | RSS | More

By Major Pain Podcast, ago