Major Pain

Paco has been battling long COVID since the first wave of the pandemic

TheIncrediblePaco is a well-known content creator in the Mario Maker community, who was making his full-time living playing video games leading up to the start of the COVID-19 pandemic. Tens of thousands of fans subscribe to his Twitch channel for live streams, and YouTube for edited videos. He became ill with COVID during the very first wave of the pandemic in March of 2020, and has never fully recovered. Long COVID has deeply impacted his life, and his ability to pursue content creation.

In this episode of the Major Pain podcast, Paco shares his long COVID journey along with updates on how he's been doing since hitting pause on his gaming career. His initial COVID infection was fairly severe, but after a month he was able to return to streaming in a limited capacity. Although his fatigue was still concerning, he pushed himself to get back to regular streams and rebuild strength. Looking back, Paco wonders if this push may have contributed to the development of long COVID, as he soon hit a wall and fell into a frightening flare-up. He says, "My first year to year and a half of having long COVID was probably the scariest in the sense that my mind abandoned me....I felt like I had dementia. Word recall went out the window. Memories went out the window. People would talk to me, I would hear words but nothing was being processed."

After about a year of rest he improved enough to return to streaming, but a few months later his health crashed once again. Since then he has been focused on researching long COVID and trying different therapies in the hopes of regaining some resiliency with his health.

During this interview Paco describes what it's like to live with long COVID, including his frustration that the world has moved on from the pandemic while so many are still suffering. Over the past three years he has come to terms with his limitations, learning to follow the cues his body is giving him. Still, he has not given up hope that he might find treatment to improve his situation, and is experiencing slow progress that will hopefully allow his return to YouTube and Twitch.

Connect with Paco on Twitter @ThePacoShow, or YouTube and Twitch @TheIncrediblePaco. He also has a Twitter focused on his long COVID experience @PacoOnPause, and will soon be making TikTok content under that name as well.

Physical therapist/author Rick Olderman discusses his unique approach to chronic pain management

Rick Olderman is a sports and orthopedic physical therapist with over 25 years experience. He is the author of Solving the Pain Puzzle: Cases from 25 Years as a Physical Therapist as well as the Fixing You® series of books to help people with chronic pain or recurring injuries. He has also suffered through his own history of chronic pain, which greatly influenced his approach to physical therapy.

In this week's episode of the Major Pain podcast, we sit down with Rick to hear about his personal journey and professional insights. A series of sports injuries and occupational strain in his youth led to chronic pain in his neck and back. Instead of seeking professional help, Rick enrolled in physical therapy school with the ulterior motive of learning how to fix his own pain. After graduation he became frustrated that traditional PT methods were only effective for treating acute pain, not chronic pain.

During this interview Rick shares his opinions on why chronic pain patients often don't see results from traditional physical therapy, leading him to develop his own modalities. He feels that medical students are trained to break the body down into components, instead of treating the body as a system in which everything is connected. He also discusses how specialists and practitioners all approach patient care through their own belief systems, limiting the options that may be offered to patients. You can learn more about Rick and discover his published works at https://rickolderman.com/

A fecal microbiota transplant helped Kimberly recover after developing C. diff.

Kimberly's harrowing experiences with gastrointestinal issues go back about 10 years. At first she would have random bouts of diarrhea, but be fine for months in between. She didn't seek medical care until about 7 years later when these issues had become so severe they were interfering in daily life. Her doctor brushed her off due a previous anxiety disorder, insisting these symptoms were anxiety related and only showing interest in medicating Kimberly's mood.

Kimberly's situation continued to worsen, to the point she could barely eat anything at all. It became intensely difficult for Kimberly to function, experiencing extreme fatigue, weakness, and constant bathroom emergencies that made leaving the house almost impossible. In desperation she started trying naturopathic doctors, finding a practitioner who recommended a stool sample. This test revealed an infection with the parasite Dientamoeba fragilis, which had been stealing away Kimberly's nutrients and making her ill for years. She took a course of antibiotics and quickly felt better.

Unfortunately, Kimberly's symptoms returned worse than ever within a few weeks, this time accompanied by intense stomach pain. Further testing revealed Kimberly was now infected with the C. diff bacterium (Clostridioides difficile) which often grows out of control after taking antibiotics. This bacterium can be antibiotic resistant, and severe cases can cause fatal damage. Luckily, her naturopath recommended a fecal microbiota transplant (FMT), a procedure that brought Kimberly's C. diff infection under control.

In this episode of the Major Pain podcast, Kimberly discusses her health journey and the horrific medical gaslighting she experienced along the way. She talks us through the process of receiving a fecal microbiota transplant, a procedure that restores healthy gut bacteria by introducing a sample from a donor. Although her experiences living through this ordeal were intensely horrible, she has learned valuable lessons about listening to her body and accepting help from loved ones.

Jeff is a musical theater composer suffering from mysterious disabling episodes

Jeff lives with a medical mystery that has stumped doctors in multiple specialties. He experiences episodes that strike about once a week, and leave him almost catatonic. He will become hypersensitive to his environment, unable to communicate, and struggle to perform basic functions. Strangely, the only consistent way to end an episode is for Jeff to fall asleep, even for just a few minutes. It's as if falling asleep flips a switch that corrects this troubling dysfunction.

In this episode of the Major Pain podcast, Jeff shares his history with these strange episodes in hopes we might crowd-source some information he can take to his care team. Doctors have theorized these events may be due to migraine aura or some type of seizure, but no conclusive evidence has been found to support either theory. Doctors assuming these episodes are caused by anxiety has made it difficult for Jeff to push for further testing, even though the phenomenon happens when he is both anxious and relaxed.

Being at the mercy of these unpredictable episodes has completely upended Jeff's life. He lives in fear that one will strike while he engaged in a critical activity like driving. He has learned to preemptively discuss the affliction with coworkers, since he cannot communicate while it is happening. Jeff also lives with Tourette's syndrome, and wonders if there could be a connection between his two conditions. If you have any medical knowledge of this type of situation, please reach out to [email protected].

Jeff works as a musical theater composer, you can find his work at http://jeffthomsonmusic.com/

Karen discusses her diagnosis with Parkinson's disease on this week's podcast.

In 2015 Karen noticed that her right arm was not swinging as normal when she walked. She was sent to a neurologist who quickly diagnosed her with Parkinson's disease (PD), a neurodegenerative disorder that affects the body in a wide variety of ways. Symptoms can include tremors, slowed movement, muscle rigidity, speech changes, loss of smell and fatigue. Since her diagnosis, Karen has experienced a slow progression of her symptoms.

Doctors are still uncertain as to the cause of Parkinson's, but there are several factors believed to be involved. Some people appear to have a genetic disposition towards the disease, while environmental factors like long-term toxin exposure or repeated blows to the head appear to play a part. PD causes damage to certain nerve cells in the brain, leading to reduced levels of dopamine. Although dopamine is often thought of as the 'feel good' chemical, it also plays important roles in movement, memory, motivation and more. All of these bodily functions can be affected by the lowered dopamine levels caused by PD.

In this episode of the Major Pain podcast we speak with Karen about her Parkinson's diagnosis, learning about her history with the disease as well as general information about PD itself. She discusses her symptoms and their progression, the medication and lifestyle changes she uses for disease management, and learning to integrate this diagnosis into her daily life.

Tyler Roope is a viral TikTok creator living with spinal muscular atrophy type 2

Tyler Roope is a 25 year old TikTok star, who blends comedy and education while advocating on behalf of the disability community. He lives with spinal muscular atrophy (SMA) type 2, which severely limits his voluntary muscle movement. Tyler is considered a strong type 2 since he is able to move his arms and legs a small amount. In contrast, type 3 patients have more mobility and may be able to walk, while type 1 patients usually do not survive past their second birthday.

In this episode of the Major Pain podcast, Tyler discusses what it was like growing up with SMA. His best friends in elementary school (who remain friends to this day) were extremely supportive and inclusive, making special rules so Tyler could participate in sports. He would eventually go to UCLA where he double majored in political science and sociology, and is extremely grateful for the aides who helped him live on campus. He was never bullied for his disability or for using a wheelchair in school. In fact, his first bullying experiences happened through TikTok after his content went viral online.

Since SMA affects Tyler's entire body, he relies on assistive technology like a cough machine to keep him as healthy as possible. Without being able to use his muscles, they continue to atrophy over time. The scientific community has been developing medication for this disease, and Tyler is currently taking some that seems to be slowing muscle atrophy. Tyler is an avid gamer, telling us about the importance of accessibility features in video games, and the types of games that work best with his disability. He is deeply grateful for his incredible family and friends who support his needs, and for the community that supports his popular TikTok channel.

Tyler is currently raising funds for a new accessible van! Check out the GoFundMe here: https://www.gofundme.com/f/help-tyler-get-an-accessible-van

Troy discusses the unique medical needs of the LGBTQ community

Troy is a nurse practitioner at a LGBTQ healthcare clinic in Seattle, Washington. He refers to it as gay providers taking care of the gay community, allowing a rare opportunity for himself and his colleagues to make meaningful differences in the lives of their patients. Many individuals across the spectrum of gender and sexual identity face stigma, judgment or even discrimination from doctors in the traditional medical establishment. Troy's practice is working to change that, one patient at a time.

In this episode of the Major Pain podcast, Troy discusses his work and the unique medical needs of his community. Prior to working at this clinic he worked at a large hospital, becoming frustrated his patients were scheduled in 10 minute slots. He recognized he could not give adequate care in this amount of time, and jumped at the opportunity to move to his current clinic.

Troy and his colleagues specialize in medical treatment unique to LGBTQ healthcare. During this podcast we discuss HRT (hormone replacement therapy) for transgender patients, and PREP (preexposure prophylaxis) for HIV prevention. He shares information about the shifting demographics of HIV infections, and how the heterosexual community now makes up a large proportion of new infections since the gay community has rallied around preventative care.

Seeing a doctor that does not respect one's gender or sexual identity can be a traumatic and dangerous experience for patients. Through this podcast we hope to spread awareness that clinics specializing in LGBTQ care exist, and share information about the unique needs of this community. We recognize that not all neighborhoods have clinics like this, so Troy has collected some local and national resources for individuals in need:

Local Resources in Seattle

Seattle LGBTQ Center:  https://www.gaycity.org/resources/

Ingersoll Gender Center: https://ingersollgendercenter.org/

National Resources

National LGBTWIA+ Health Education Center: https://www.lgbtqiahealtheducation.org/

Fenway Health Institute: https://fenwayhealth.org/the-fenway-institute/education/the-national-lgbtia-health-education-center/

The Trevor Project: https://www.thetrevorproject.org/resources/

The Human Rights Campaign: https://www.thehrcfoundation.org/professional-resources/the-national-lgbt-health-education-center

Housing Assistance for LGBTQ+ Youth: https://www.architecturaldigest.com/reviews/moving/housing-assistance-for-lgbtq-youth

Amelia wasn't diagnosed with her genetic condition myotonia congenita until adulthood

Myotonia congenita is a genetic disorder that Amelia recently discovered she has been living with her whole life. The disease is characterized by an inability to quickly relax muscles after contraction, which can cause muscle imbalance, rapid fatigue, chronic pain, and difficulty with daily movement like climbing stairs or standing after sitting down.

For years Amelia knew something in her body was not functioning properly, but poor medical care prevented her from getting a diagnosis until adulthood. She experienced constant medical gaslighting, being told nothing was wrong or that she was too sensitive, and being misdiagnosed with fibromyalgia. It wasn't until she found a doctor willing to listen that genetic testing was finally recommended, which uncovered myotonia congenita.

In this episode of the Major Pain podcast, Amelia tells us what it's like to live with myotonia congenita. She also details her frustrating history searching for answers, and the feeling of finally uncovering the truth. Now that she finally understands what has been happening in her body all these years, she feels anger at her past treatment, disappointment that she wasn't believed and sadness for the lost time. She is eager to share her story in the hopes people going through something similar will feel less alone.

Connect with Amelia online: https://msha.ke/helloameliagreen/

Courtney's mysterious illness remains undiagnosed

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 as a pharmacist, but when her illness kicked into high gear she became unable to pursue travel or maintain employment. Since then she has put as much energy as possible into solving her diagnostic puzzle, but an answer has remained elusive.

Courtney's neurological symptoms started with facial spasms that eventually spread to her arm, shoulder and ribcage. These uncontrollable movements are accompanied by extreme fatigue, bouts of confusion and heart rate issues. Her doctors have found several troubling abnormalities in her testing including spinal lesions on her MRI, slightly elevated MS and lupus antibodies in her spinal fluid and elevated porphyrins in her urine. Frustratingly, none of these findings have clearly pointed to a diagnosis.

The deeper Courtney sojourns into this diagnostic morass, the more frustrated she becomes by infuriating contradictions. Her disability claim has been denied with the recommendation she return to work, but doctors agree she is not ready to be cleared for employment. She has tested with low copper and ceruloplasmin (a protein that binds to copper), and started supplementing copper to correct this. Then she learned these tests could be indicative of excess copper storing in her body (the main symptom of Wilson's disease), and cannot get a clear answer if her copper is low or high. She has tested as a genetic carrier for Wilson's disease and brittle cornea syndrome (a connective tissues disease related to EDS) but her doctors don't agree if being a carrier could be causing symptoms. She has notes from so many doctors on her chart that new providers will often assume she is a problematic patient and be reluctant to add anything new.

In this episode of the Major Pain podcast, Courtney discusses her difficult diagnostic journey so far. She is deeply grateful to the friends and family who have stepped up to care for her when caring for herself became difficult. Her sister owns a campground on the Mississippi river in Savanna, Illinois that has been an invaluable haven from her medical trauma (learn more here). She hopes that sharing her story on this platform might crowdsource new diagnostic ideas to pursue. If you have ideas to share after listening to her journey, email Jesse at [email protected].

In this episode we also check in with former guest Sydni Dupre to announce her new video podcast! Find her on YouTube at https://www.youtube.com/@SydniGDupre

Andrew, Aimee and Ilana return to update us on their health journeys.

This week we kick off the third season of Major Pain by catching up with previous guests!

First we'll check in with Andrew, who originally appeared in December 2021 to discuss mild traumatic brain injury (MTBI). He has been slowly improving since then, feeling as if a new self is emerging. He'll tell us about pushing himself socially and physically through tango dancing, feeling as though he is coming back alive. Find his original episode here: https://majorpainpodcast.com/living-with-mild-traumatic-brain-injury/

Next we'll talk to Aimee Stephanie Perez, who originally appeared in June 2022 to discuss psoriatic arthritis, psoriasis and PMDD. A few months back Aimee was diagnosed with colitis, having to now deal with an additional chronic illness. Although she was not surprised by this diagnosis, she is still struggling to integrate it into her life. The dietary restrictions have proved extremely challenging. Her late father lived with rheumatoid arthritis and colitis, so this new diagnosis has her reconsidering many memories of her father. Find her original episode here: https://majorpainpodcast.com/living-with-psoriatic-disease/

Lastly, we'll chat with Ilana Jacqueline, who originally appeared in May 2022 to discuss primary immune deficiency disease and her mysterious adhesion disorder. Ilana is also dealing with the emergence of another chronic illness, having recently been diagnosed with intracranial hypertension. Her condition had become so severe that her mother noticed her eye bulging along with abnormal speech. Ilana is now receiving regular spinal taps to relieve pressure on her brain, since pharmaceutical intervention was not well tolerated. Although her doctors have recommended brain surgery, Ilana is weighing her options while working on a new book about medical gaslighting. Find her original interview here: https://majorpainpodcast.com/chronic-illness-author-and-advocate-ilana-jacqueline-shares-her-rare-disease-journey/

Another bonus episode for our Patreon subscribers is now available! Take a listen (or sign up to gain access) HERE

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