Major Pain

Aimee's first psoriasis breakout occurred when she was just 12 years old. She was at a sleepaway camp, where something about the change in environment triggered an outbreak of plaques and scales all across her scalp. Her symptoms would come and go for the next several years but remained manageable, until she was hit with a massive flare at 21 after a traumatic event. This seemed to open the floodgates for her psoriasis, causing an outbreak that covered most of her body. At first Aimee would rely on unhealthy coping mechanisms while trying to hide her psoriasis, but at 26 realized this was unsustainable. She started posting psoriasis selfies online and making shirts stating that psoriasis isn't contagious, finding the courage to conquer insecurity through budding advocacy. Now 34 years old, Aimee has made great strides in finding healthy and positive ways to live with her disease while becoming a psoriasis educator and advocate.

In this episode of the Major Pain podcast, Aimee discusses her complex relationship to psoriatic disease. She not only has psoriasis, but also psoriatic arthritis (PSA) which causes joint pain, stiffness and swelling. With a visible skin condition, she feels that every social interaction carries the risk of emotional setbacks, particularly with intimate relationships. She has faced horrible judgement and bullying over the years, being told by a former romantic partner that she would be perfect if it weren't for her disease. Aimee now feels that psoriasis is a "crappy person detector," helping to weed out people in her life who aren't worth investing in. Although psoriatic disease is already a challenge, Aimee also lives with mysterious stomach issues and premenstrual dysphoric disorder (PMDD). This causes intense monthly hormonal changes leading to severe depressive episodes. Aimee has learned that acceptance is key to meeting these health challenges. Instead of fighting against them she is learning to work within the parameters her body presents, finding community and support as she spreads her message of acceptance and empathy.

Danielle's harrowing chronic pain journey started with one bad olive. She broke a molar on an unexpected olive pit, requiring surgery to remove the remaining fragments of tooth. The dental surgery went very poorly, with the dentist removing significant amounts of bone and even breaking into the sinus cavity. Danielle had to go see a special dentist the next day to attempt and mitigate the damage done by the first surgery. Initially hoping to have an implant installed, Danielle was dissuaded from doing so because there was so little bone remaining that the surgery would have been extremely difficult. She didn't know that missing a tooth can cause jaw bone to degrade over time, eventually finding herself in excruciating facial pain that forced her to leave work. This was the start of a five-year long chronic pain nightmare.

In this episode of the Major Pain podcast, Danielle shares the story of how her chronic pain became so severe that she attempted to take her own life. For years she had been trying to get help for her dental pain, being juggled back and forth from doctors to dentists and back again. No one was willing to take her pain seriously or take any action, treating her like she was making everything up for attention. Danielle was so desperate to be out of pain that she attempted to overdose and drown herself, but to her shock woke up in a jail cell the next day. After enduring more pain than she ever thought possible, Danielle finally found a doctor who took one look at her and instantly validated the fact that her face was collapsing. He performed three surgeries to fortify the bone and install a dental implant, mercifully lowering Danielle's pain level. She was also diagnosed with erythromelalgia, a rare disorder that causes episodes of burning pain in the extremities and face, and given medication that has helped reduce symptoms. After years of unbearable pain, Danielle finally feels vindicated in her knowledge that something had been wrong all along and grateful to have survived. She still deals with manageable chronic pain, but her outlook on life has been completely altered, deepening her empathy for others in crisis.

This episode contains open discussion of attempted self-harm. If you are in crisis and need support, please call the national suicide prevention lifeline at 800-273-8255.

Our Patreon bonus episode for the month of June is now available. Click here to listen: https://www.patreon.com/posts/67031392

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 and seeing the disparate pieces of her journey link together. From being a child in the dentists office screaming that her local anesthetic wasn't working, to high school when her jaw constantly dislocated, to needing surgery at 20 to tighten the ligaments of her shoulder, her genetic condition had been making itself known her entire life. Doctors had constantly ignored or brushed off the signs, leaving Ashley to gaslight herself into thinking everything was fine. Once her condition progressed past the point of denial, she took it upon herself to uncover answers. She eventually ordered genetic testing from a company online that pinpointed a defect. She took these results to a rheumatologist that confirmed what Ashley had begun to suspect, and she was diagnosed with classic type 1 Ehlers-Danlos syndrome (cEDS).

In this episode of the Major Pain podcast, Ashley speaks her diagnosis out loud for the first time. She discusses the monumental re-contextualization of finally finding answers, having barely begun the process of integrating this information into her life. Her condition, cEDS, is a connective tissue disorder that affects her entire body. This genetic defect results in her body not coding for connective tissue properly, causing wide ranging symptoms including chronic pain, hypermobility and exhaustion. This also affects her vision, which is far from the normal 20/20 at 20/1200. She also lives with a rare form of adrenergic POTS (postural orthostatic tachycardia syndrome), meaning her heart jumps to extreme rates with minimal activity. Since cEDS is genetic there is currently no cure or treatment, but there are methods of management that can be beneficial. Ashley is now beginning the process of learning the best ways to live with her disease, including purchasing her first cane. Although the prospect of living with an incurable disease is daunting, the ability to finally identify her mysterious ailment is deeply comforting.

Kristin has lived with pain since she was 9 years old, a journey that has taken her through chronic migraines, celiac disease, covid complications and remaining medical mysteries. As a child she would experience tingling pain in her head, often accompanied by visual disturbances, nausea and vomiting. Shortly after these painful episodes were diagnosed as migraines, Kristin's mother received her own diagnosis of celiac disease. This is an autoimmune condition characterized by an immune reaction to gluten. Kristin underwent an endoscopy to learn if she shared her mother's diagnosis, and was told her test results showed no signs of celiac disease. However, in high school Kristin started experiencing intense stomach pain after eating, often falling to the floor in pain. She was re-evaluated for celiac disease and learned that she had been living with it all along, initially misdiagnosed due to changing standards in testing interpretation.

In this episode of the Major Pain podcast, Kristin talks us through her complicated health journey. After being diagnosed with celiac disease and eating gluten-free, she became concerned during her college years when widespread chronic pain and exhaustion became constant issues for her. Turning to doctors for help, she was told she likely had an additional autoimmune condition due to a positive ANA test. However, these doctors could not narrow down which disease they believed she had, so they diagnosed her with fibromyalgia. Kristin discusses the frustration of living with chronic pain while being unsure if her diagnosis represents the complete picture, or if additional diagnoses are yet to be uncovered. Matters were complicated by two bouts of covid that exacerbated pre-existing asthma symptoms. She shares her experience trying different medications, treatments and procedures to manage her many painful conditions, and anger over the constant medical gaslighting she has lived through. She also discusses the difficulty of having family and friends who don't understand what she's going through, and how finding community around chronic illness online has been deeply reassuring.

As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. But in reality, Ilana was born with primary immune deficiency disease (PIDD) meaning she was missing a piece of her immune system, making her abnormally susceptible to disease and poorly equipped to heal from infection. She was also experiencing symptoms of a mysterious adhesion disorder, causing painful and dangerous masses of scar tissue to grow inside her body. It wasn't until Ilana was 19 years old that these conditions were diagnosed, illuminating a mystery that had shrouded her childhood in constant medical trauma.

In this episode of the Major Pain podcast, Ilana talks us through her diagnostic journey and the subsequent time learning to manage her rare diseases, including how intravenous immunoglobulin (IVIG) infusions have improved her quality of life. We also discuss her impressive career as a patient advocate, speaker, influencer and author. In her 20s, Ilana started blogging about her life with chronic illness. This blog became so popular that Ilana was offered a book deal, and in 2018 she published her first self-help book, Surviving and Thriving with an Invisible Chronic Illness. Now working full-time to better the lives of chronic illness patients, Ilana has amassed a wealth of knowledge about navigating an infuriating healthcare system and seeking rare diagnoses. As an influencer and advocate she works to spread awareness and empathy, aiming at improving the outcomes for the next generation of chronic illness patients.

Visit Ilana online at https://ilanajacqueline.com/

Amanda grew up experiencing constant trauma. Her mother was deeply abusive, to the point that Amanda's father was given custody at 6 years old. He moved the family to California and joined a religious cult, where Amanda would continue to suffer abuse with nowhere to turn. Having lived through emotional, physical and sexual trauma throughout her young life, Amanda was desperate to escape a never-ending cycle of terror. She fell in love and got pregnant at 16, starting a new life with a supportive partner who remains at her side decades later. While working to ensure she would not pass on her trauma to her children, she also had to reckon with emerging chronic pain and other horrific symptoms that would eventually be diagnosed as endometriosis.

In this episode of the Major Pain podcast Amanda shares her story of surviving trauma, and the connection between childhood abuse and endometriosis. This is a disease of the reproductive organs, in which tissue that normally grows inside the uterus starts to grow outside, causing intense pelvic pain and a variety of other symptoms and potential damage. Amanda's first sign of endometriosis was a ruptured ovarian cyst at just 19 years old, but it took another 10 years of intense pain to actually get diagnosed. Many doctors brushed off her complaints as drug seeking behavior, or assumed she was experiencing normal menstrual pain. After finally being diagnosed with endometriosis she underwent a partial hysterectomy, being falsely told this procedure was a cure. When symptoms persisted it took another 10 years to find appropriate care. Now, after more than 20 years living with this disease, she has discovered mounting research that childhood trauma can trigger endometriosis symptoms. She is sharing her story in the hopes that others can break through cycles of abuse to find the care they deserve from doctors who are willing to listen.

This episode contains disturbing content and discussion of abuse that may be upsetting or triggering to some listeners.

Our bonus episode for the month of May is now available to all listeners supporting this podcast through Patreon! Click here to listen, or sign up to gain access.

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 body was infuriatingly unpredictable and constantly forced her to slow down. It wasn't until Brandy got mad and started fighting for answers in her 30s that doctors finally helped her uncover two invisible conditions that had been hiding her whole life.

In this episode of the Major Pain podcast, Brandy discusses being diagnosed back to back with hypermobile Ehlers-Danlos syndrome and autism in her mid 30s. She says, "In general, getting those diagnoses were the best things that have ever happened in my life, to let me move forward with being who I really am on the inside, being who I am in my mind and in my heart, other than just a bag of defective bones." After cycling through careless doctors and harmful misdiagnoses, finding answers has made her life significantly easier. She has learned the value of listening to her body, adjusting behavior day to day based on symptoms while letting go of impossible standards. Her diagnoses have provided a framework through which she can make sense of her journey thus far, and find positive, productive ways to look towards the future.

This week's episode is sponsored by HandiCup! Head to handicup.com and enter the code 'MAJORPAIN15' at checkout for 15% off accessible beverage holders.

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 later when the proof of her readiness was irrefutable. Now she is applying that same tenacity towards understanding her own mysterious chronic illness. Although a few pieces of her health puzzle have fallen into place, huge questions and frustrating obstacles remain.

In this episode of the Major Pain podcast, Caitlin talks us through her complex health situation. She is currently diagnosed with POTS (postural orthostatic tachycardia syndrome), gastroparesis, and is dealing with chronic pain from a spondylolisthesis. This is a condition in which a vertebrae in the low back slips out of place, which Caitlin discovered after falling off a horse in 2010. She has hypermobility, but isn't sure if it is caused by HEDS (hypermobile ehlers-danlos syndrome) or hypermobile spectrum disease. At one point she was diagnosed with ankylosing spondylitis, but remains unsure if this diagnosis is accurate. She also has mysterious neurological symptoms currently diagnosed as FND (functional neurological disorder) but members of her care team disagree on this diagnosis. To make matters worse Caitlin is experiencing horrific gaslighting from medical professionals, including being tricked into taking medication in an attempt to prove she was lying about symptoms. She shares the deep frustrations of being disrespected, devalued and disbelieved, while finding strength to continue advocating for care.

This week we are celebrating the one year anniversary of the Major Pain podcast, kicking off the second season of the show by catching up with previous guests! India and Brooke each have a new diagnosis that offers some clarity, while still leaving big picture questions unanswered. Cammie has found a new medication regimen that has transformed her energy levels, and Evan is racing to keep up. We celebrate the victories while recognizing difficult realities, learning that complex medical journeys are ever evolving.

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 requests for brain imaging were repeatedly denied. For years they have been advocating for help from the medical community, while also seeking relief through self care and experimentation. Finally, Misty was able to convince a doctor to order an MRI, and it was discovered that they have a pineal gland cyst in their mid brain.

In this episode of the Major Pain podcast, Misty talks us through their decision to undergo brain surgery in an attempt to drain their pineal gland cyst. These cysts are often asymptomatic, and it is extremely difficult to find a doctor willing to operate. However, it is well documented that these cysts can indeed cause headaches and other symptoms in some individuals. Given the mysterious nature of Misty's constant headaches, they were willing to try any avenue that might offer relief. Unfortunately their surgeon did a shockingly poor job, only removing approximately 35% of the cyst and failing to complete the biopsy he agreed to order. His technique was so sloppy that another surgery was required to fix the protruding surgical cement covering the hole drilled into Misty's skull. Now Misty is unsure where to turn next. They experienced a lessening in constant cranial pressure after the surgery, but their headaches are still present. They are unsure if further surgery would provide additional relief, and the medical professionals they've turned to for aid continue to be of little help. They discuss the importance of self advocacy, self care, and continuing to fight for doctors to take their situation seriously.

Our bonus episode for the month of April is now available on Patreon: https://www.patreon.com/posts/april-bonus-64726224