Major Pain

Jesse Mercury

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at [email protected].

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Top 10 Major Pain Episodes

Goodpods has curated a list of the 10 best Major Pain episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to Major Pain for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite Major Pain episode by adding your comments to the episode page.

Living with POTS and EDS

Major Pain

01/26/22 • 71 min

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 thought Zoe was experiencing long covid, but upon digging deeper they realized she had experienced some of these symptoms before the covid pandemic began. She went through dysautonomia testing which revealed an official POTS diagnosis, and was then diagnosed with EDS (Ehlers-Danlos Syndrome) by a rheumatologist. In episode 43 of the Major Pain podcast, Zoe discusses her difficult health journey so far. She has been working towards a music education degree but her health has made that path more and more difficult. Now that she has a diagnosis, she is looking to integrate her life goals with her health realities, potentially changing course towards social work. She discusses the importance of learning patience during her diagnostic journey, since doctors visits tend to be excruciatingly far apart. She also shares how creating TikToks has provided her a platform for chronic illness advocacy and a vital creative outlet that has brought her a valuable sense of community.

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LoveWarriorHugs on Living With Five Chronic Illnesses

Major Pain

05/01/24 • 58 min

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 her own experience living with five chronic illnesses, asthma, epilepsy, multiple sclerosis, trigeminal neuralgia and IBS. On this episode of the Major Pain podcast, Jamie discusses her chronic illness journey. The illness that currently affects her the most is trigeminal neuralgia (TN), which causes daily facial pain. Jamie walks us through how this disease works, the many treatments she has attempted and the link between TN and MS. She discusses how her diagnoses have interwoven with her life, including the difficulty of balancing chronic illness with motherhood and how her passion for advocacy was sparked.

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Kristin Shares Her History with Acromegaly, A Growth Hormone Disorder

Major Pain

11/22/23 • 72 min

In her early 20s, Kristin's body started exhibiting changes that she could not explain. She started gaining weight mysteriously, noticing that her hands and face were growing larger. Over the years this mystery intensified, even her tongue and internal organs were growing. Kristin sought help from many doctors, but was repeatedly accused of being an obese hypochondriac. Doctors were quick to lay blame at Kristin's feet, while none recognized the rare disorder that was hiding in plain sight. Kristin has acromegaly, a disease caused by a tumor on the pituitary gland that produces growth hormone. When this disease develops in childhood it leads to extreme height, and is called gigantism. But when an adult develops this tumor they do not gain height, instead the bones of their hands, face and feet expand, causing significant changes to their appearance. Since these changes happen slowly it usually takes many years to get a diagnosis, and unfortunately it took Kristin over 20 years to get diagnosed. In this episode of the Major Pain podcast, Kristin discusses her decades long journey with acromegaly. After years of searching for an explanation for why her body was changing so dramatically, she met a neurologist who took one look at her face and immediately knew what was happening. Kristin soon learned that her pituitary tumor had been growing for so long that it was wrapped around her carotid artery and wouldn't be operable if it grew any larger, which could be fatal. She rushed to emergency surgery, and the tumor was removed successfully. Suddenly relieved from an excess of growth hormone, it took years for Kristin's body to adjust. Although this process has been extremely difficult and painful, Kristin is grateful to have survived. It's been over a decade since her surgery, and she has spent that time cultivating a new relationship with her body, focusing on self-love. Kristin mentions an acromegaly support group on facebook, which can be found here: https://www.facebook.com/acromegaly During the introduction of this podcast Jesse discusses his disability attorney, who you can find at https://wadisability.com/

Transposition of the Great Arteries: My Blood Flows Backwards

Major Pain

03/13/24 • 52 min

Like many babies born with transposition of the great arteries, Amelia was born blue. Her blood was not circulating to her entire body because the two main arteries leading blood away from her heart were switched, sending blood in the wrong direction. She was immediately helicoptered to a larger hospital to undergo surgery to restore blood flow. Over 30 years later, Amelia is still managing the side effects of her congenital birth defect. On this episode of the Major Pain podcast, Amelia discusses living with transposition of the great arteries. In 1988 the prevailing corrective surgery was called a Mustard procedure, which restores oxygenated blood to the whole body. Babies born today will have a different procedure that switches the great arteries to flow normally. That makes Amelia's heart exceptionally rare, since there aren't many patients her age who underwent a Mustard procedure. In high school her doctors wanted to perform the switch surgery, and put a band on Amelia's heart to strengthen it in preparation. Unfortunately, this band caused more harm than good, eventually calcifying and limiting her blood flow before it was removed 15 years later without having the switch surgery done. During the years when Amelia's blood flow was limited she was constantly exhausted and her hands were often blue, but her doctors brushed off her complaints as normal for someone with a congenital heart defect. This added to the compounding medical trauma of her many surgeries (including three open heart procedures), eventually leading to a diagnosis of complex post-traumatic stress disorder (CPTSD). As an adult, Amelia was also diagnosed with autism, endometriosis and obsessive-compulsive disorder (OCD). Finally receiving these diagnoses has been deeply affirming, opening the door to better Amelia's understanding of self. Listen to Amelia's amazing story on this podcast episode! You can connect with her online at https://lnk.bio/Ameliablackwater Our host Jesse and his longtime partner Andi just got engaged! They tell the story on this month's bonus episode over on Patreon. Head to https://www.patreon.com/majorpainpodcast to gain access to the bonus podcast when you subscribe to support the creation of Major Pain.

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

Major Pain

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.

Before Helping Others With CFS Recovery, Miguel Battled For His Health

Major Pain

01/01/25 • 70 min

After recovering from CFS (chronic fatigue syndrome aka myalgic encephalomyelitis) Miguel Bautista felt like he had a new lease on life. At the height of his illness he was unable to walk or sit up in bed and needed meals blended so he could drink them. Now he is running marathons, traveling, spending quality time with loved ones and running a successful CFS recovery program. His journey through chronic illness was extremely tumultuous, but led to several profound realizations about how he was living his life. It also re-defined his life’s purpose moving forward.

In this episode of the Major Pain podcast, Miguel walks us through his incredible journey through the depths of chronic illness and back. Realizing his immune system was overactive was a turning point in his journey. He elected admittance into in-patient psychiatric care to work on calming his hypersensitive nervous system. Through the use of medication and therapy, he was back on his feet within a month, experiencing long-lasting recovery.

After getting out of the hospital, Miguel began sharing his experience online. He quickly discovered the methods he had used to recover and the lessons he learned about neuroplasticity could be applied to other people. He now operates CFS Recovery, offering both free and paid coaching to individuals living through similar circumstances. He tells us about the three fundamental principals of his recovery program: determining your individual stress threshold, understanding the base problem of a hyperactive nervous system, and recognizing that your success will be dictated by how you respond to flaring symptoms.

Check out Miguel’s program at https://youtube.com/@cfsrecovery, and hear his full story on this week’s podcast!

PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Major Pain has been selected by FeedSpot as one of the 100 best chronic illness podcasts, making the list at #6! Check out the full list here: https://podcast.feedspot.com/chronic_illness_podcasts/?feedid=7317394&_src=f1_featured_email

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast

AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain

Living with Visual Snow Syndrome

Major Pain

04/23/25 • 47 min

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life.

Willemijn’s journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto’s disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging.

In this episode of the Major Pain podcast, Willemijn tells us what it’s like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she’s in some kind of glitch where she doesn’t feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research.

Learn more about VSS at the Visual Snow Initiative’s website: https://www.visualsnowinitiative.org/

PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain

Every Time This Baker Eats, She Risks Intense Abdominal Pain

Major Pain

01/29/25 • 68 min

Danni Hertel (aka foodie_with_da_booty) has turned her passion for baking into a full time career. She is known for putting a fresh spin on classic treats. Her recipes have been featured in the Houston Chronicle, she has worked with dozens of celebrities and she has even won Best Holiday Cookie for the Houston area in 2021. While she enjoys bringing tasty treats to the masses, behind the scenes not everything is so sweet. For almost 5 years she has been dealing with intense abdominal pain, which is set off almost every time she eats.

Danni has been through every test her doctors can think of, but her pain remains a mystery. She experiences early satiety (getting full quickly when eating), bloating, nausea and sharp shooting pains that often leave her curled up in agony. This condition seems to be flared not only by eating, but by external stress and anxiety. Doctors often don’t take her complaints seriously, blame it on anxiety, or even on the fact that she is a woman. She says, “A young woman walking into a hospital or ER complaining of stomach pains, the first thing they always think of, oh, it’s your cycle, you’re pregnant ... and so I’ve been tested for pregnancy a million times because that’s what they think it is.”

In this episode of the Major Pain podcast, Danni describes her quest to diagnose her medical mystery. She shares the mental toll her journey has taken, including the development of an avoidant eating disorder. Since she experiences pain so often after eating, she struggles to eat at all. She tells us about the tests she has undergone, the potential diagnoses her doctors have discussed and the immense impact her symptoms have had on her life. Even though this situation has been extremely difficult, it has also prompted intense personal growth. She shares the things she’s learned, the ways she’s changed and how this challenge has helped her become a better person.

After hearing Danni’s story, please reach out to [email protected] if you have any ideas of what might be causing her symptoms.

Connect with Danni on her website: https://www.foodiewithdabooty.com/

PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain

From Rebellious to Transformative: Alex’s Journey with Type 1 Diabetes

Major Pain

03/12/25 • 46 min

Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to the discovery of his type 1 diabetes. Although meningitis resolved in about a month, diabetes would become a constant companion. 17 years later, Alex has learned a tremendous amount about living with this disease, in a journey that has gone from rebellious to transformative.

Alex is the host of the Rise to the Challenge podcast, where he speaks with athletes, CEOs, entrepreneurs, recovering addicts and more, sharing stories of overcoming obstacles. Facing challenges is Alex’s passion, he enjoys pushing himself out of his comfort zone to see what he can achieve. Doing so while balancing type 1 diabetes requires a level of discipline that Alex worked hard to cultivate.

In this episode of the Major Pain podcast, Alex discusses his history with type 1 diabetes. We discuss what it was like to be diagnosed at such a young age, including the feeling of isolation this brought about. He talks us through his rebellious phase, where he pushed his body to the limit and fought against his diagnosis. He also discusses his transformation in the last 6 or 7 years, where a renewed focus on nutrition and fitness changed his body and mind for the better, developing the discipline to live harmoniously with his disease.

Connect with Alex online: https://linktr.ee/alexburket

PlayWatch on YouTube, or listen on your favorite podcast platform.

AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain

Premature Birth at 24 Weeks: Preeti Discusses The Lifelong Impact

Major Pain

02/12/25 • 55 min

The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth. Preeti experienced a premature birth at 24 weeks in 1989, weighing only 2 pounds, an astonishingly early birth that she feels incredibly lucky to have survived. Premature birth can impact health in a variety of ways over the course of someone’s life, including neurodevelopmental challenges, cardiovascular disease, congestive heart failure, high blood pressure, chronic kidney disease and more. These impacts can present throughout the course of someone’s lifespan, often unpredictably.

In this episode of the Major Pain podcast, Preeti discusses not only her personal history with preterm birth, but also the wide-ranging spectrum of how premature birth can impact someone’s life. She also shares the incredible steps that were taken to keep her alive at birth in 1989. So far, the majority of Preeti’s challenges have been neurodevelopmental. She lives with ADHD and anxiety, as well as mild issues with executive functioning, visual-spatial learning and focusing. Luckily she has not experienced any issues with her organs so far, but remains constantly aware that there is potential for these issues to develop at any point in her life. As an adult she has made it her mission to educate other people about premature birth, to help both patients and their parents learn about how their lives may be impacted.

Preeti has assembled a collection of research papers for anyone interested in learning more about premature birth. You can find them here: https://drive.google.com/drive/folders/1HfLIOUepjME6GX7UJHlH3PxUt_9gHux_?usp=sharing

She also recommends the following resources:

https://www.frontiersin.org/articles/10.3389/fped.2023.1213243/full#B16

https://adultpreemies.com/resources/

PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain

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FAQ

How many episodes does Major Pain have?

Major Pain currently has 189 episodes available.

What topics does Major Pain cover?

The podcast is about Health & Fitness and Podcasts.

What is the most popular episode on Major Pain?

The episode title 'Living with POTS and EDS' is the most popular.

What is the average episode length on Major Pain?

The average episode length on Major Pain is 77 minutes.

How often are episodes of Major Pain released?

Episodes of Major Pain are typically released every 7 days.

When was the first episode of Major Pain?

The first episode of Major Pain was released on Apr 14, 2021.

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Major Pain

Jesse Mercury

Top 10 Major Pain Episodes

FAQ

How many episodes does Major Pain have?

What topics does Major Pain cover?

What is the most popular episode on Major Pain?

What is the average episode length on Major Pain?

How often are episodes of Major Pain released?

When was the first episode of Major Pain?

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