Major Pain

Podcast guest Elly Littlejohn (left) and her daughter Alysia (right) who was killed in a motor vehicle crash

Functional neurological disorder (FND) is usually diagnosed when an individual has neurological symptoms but no clinical evidence of disease, and a history of personal trauma. The theory is that the brain converts stress or trauma into physical symptoms, and the treatment involves cognitive behavioral therapy (CBT) aimed at rewiring the brain. Elly Littlejohn absolutely has a history of trauma. In 2018 she suffered every parent's worst nightmare, when her daughter Alysia was killed along with 3 others while riding in a car driven by a drunk driver. After losing her daughter, Elly began experiencing troubling physical symptoms. When she went to the doctor she was quickly diagnosed with FND. But there was a huge complicating factor, Elly's MRI showed two lesions in her brain. Elly's doctor couldn't explain these lesions, but stuck to the FND diagnosis.

On this episode of the Major Pain podcast, Elly shares her shocking story of medical gaslighting and negligence. This interview was recorded in September 2023, the same month that Elly was finally diagnosed with multiple sclerosis (MS) after years of bouncing from specialist to specialist as her symptoms worsened. Although MS was a potential diagnosis that was mentioned to her many times, no doctors were willing to override her initial FND diagnosis and begin MS treatment. By the time her diagnosis was confirmed, Elly had 15 lesions in her brain and a lesion in her spine. She is now starting DMT (disease-modifying therapy) in hopes of slowing the progression of her disease.

Elly is a passionate advocate for the chronically ill, and people who have suffered child loss. Doctors are often quick to brush off medical complaints from patients who have experienced extreme trauma, making it extremely difficult to be a trauma survivor who also has a chronic illness. Elly is raising awareness through her TikTok, her nonprofit organization and by sharing her story in this podcast episode.

Find the Alysia Littlejohn Foundation here: https://www.intheblinkofaneyeinc.org/

Judy Foreman is a lifelong journalist who spent most of her career at the Boston Globe as a science and medical writer. She had a medical column that was syndicated in national and international outlets including the Los Angeles Times, Dallas Morning News, Baltimore Sun and others. She is the author of “A Nation in Pain” (2014), “The Global Pain Crisis” (2017), and “Exercise is Medicine” (2020), as well as her first fiction novel “CRISPR’d,” (2022) and her recent memoir “Let the More Loving One be Me."

In this episode of the Major Pain podcast, Judy discusses how her journalism career intersected with her own chronic pain journey. As a medical writer at the Globe she felt powerful, people would take her calls and listen to her. But as a patient, she felt like all her power was stripped away. She had a hard time getting doctors to listen to her and take her pain seriously. Finally she found a doctor who believed her, who uncovered that she was suffering from spondylolisthesis. This means her vertebrae were sliding over each other and pressing a nerve. A proper diagnosis opened the path to helpful physical therapy, which has allowed her to live mostly pain free.

In this podcast Judy also discusses her research into the healthcare system, the opioid epidemic, gender disparities in medicine and how exercise affects the body. Learn more about Judy and find her work at https://judyforeman.com/

Jessy has been living with a disabling mystery illness that has turned his life upside down. He experiences extreme fatigue, brain fog, tremors and intense pain. His body has become so unreliable that he requires a wheelchair to navigate the world. And yet, his doctors have no idea what is wrong or how to help him.

In this episode of the Major Pain podcast, Jessy discusses his mystery illness and the profound impact it has had on his life. His experiences with the medical establishment have been almost as challenging as the illness itself, with many doctors brushing off his complaints or refusing to run tests. Jessy is currently being examined for young onset Parkinson's disease (YOPD) but has yet to make headway in confirming or disproving this diagnosis. His medical crisis has extended to all corners of his life, making it difficult to bring his full self to work or parenting. He is trying to harness the anger at how doctors have treated him as fuel to get him out of bed every day, and keep fighting until he finds answers.

We hope that the Major Pain audience may have some ideas for Jessy to explore in regards to his mystery illness. Please email us at [email protected] if you have anything to suggest.

A great resource for learning about mast cell activation syndrome (MCAS) was mentioned in the introduction to this episode, and can be found here: https://www.ifm.org/news-insights/root-causes-treatment-of-mast-cell-disease/

This week on the Major Pain podcast, Seattle based performer Rachel Guyer-Mafune discusses her history with mental health challenges, including anxiety, depression, ADHD and bipolar disorder. Although she was diagnosed with bipolar disorder in freshman year of college, she is only now beginning to open up about this diagnosis publicly. She describes the feeling of oscillating between depressive and hypomanic states, and how hypomania most affects her sleep, speech and spending. Rachel discusses how harmful stigma and stereotypes prevent people from being open about mental health, and provides invaluable insight into the reality of living with these challenges.

Hollie has been living with spinal adhesive arachnoiditis for about 16 years. Many people have never heard of this disease, including many of Hollie's doctors. The arachnoid is a membrane that surrounds and protects the nerves in the spinal cord. Arachnoiditis refers to inflammation of this membrane, which can progress to cause bunching of the nerves in the spinal cord (called adhesive arachnoiditis). Arachnoiditis is caused by trauma to the spinal cord, often due to common medical procedures like lumbar punctures, epidurals or spinal surgery.

In this episode of the Major Pain podcast, Hollie shares a first-hand perspective of living with adhesive arachnoiditis while teaching us about her rare disease. Her symptoms include severe neuropathy, burning sensations in her lower legs, tremors in her legs and functional challenges. She cannot walk or stand for long periods of time, often requiring a wheelchair. Even sitting or lying down in one position for too long can trigger a flare.

Hollie shares with us the protocol she uses to manage adhesive arachnoiditis, including medications and physical practices. She also discusses her love for the online arachnoiditis community, a group of people coming together to discuss their shared experiences while living with this painful condition.

The adhesive arachnoiditis resources Hollie shares during this episode include:Arachnoiditis & Chronic Meningitis Collaborative Research Network: https://www.acmcrn.org/The Tennant Foundation: https://arachnoiditishope.com/

Are you struggling to find your way through the American healthcare system? Managing a chronic illness or disability is hard enough, but convoluted healthcare plans, access issues and affordability can put brick walls in the way of necessary care. Many patients are unaware that organizations like Patients Rising exist with the sole purpose of helping patients who feel stuck or lost within the healthcare system.

This week on the Major Pain podcast we speak with Terry Wilcox, co-founder and CEO of Patients Rising. This organization focuses on access and affordability issues around healthcare. They run a free helpline where they help guide patients who don't know where to turn next. If you are struggling to afford a specific test, feel confused about insurance options, need help finding transportation to a far away doctor, or are facing any other access or affordability issue, the staff at Patients Rising are waiting to help. Give them a call at 800-685-2654 or email them at [email protected].

In this episode we also discuss what to look for when seeking new insurance, and how you can become a patient advocate.

Visit Patients Rising online at https://www.patientsrising.org to learn more about their organization, or make a donation to help support patients in need.

Elaine's odyssey to understand and treat restless leg syndrome (RLS) has spanned decades. Symptoms began in her 30s, pulling and jerking sensations mostly in her legs that made it difficult to relax. She had no idea how to describe what was happening, deciding it was impossible to tell a doctor when she couldn't explain it to herself. Over time these symptoms would increase in severity, turning into something that could not be ignored. Eventually she read an article about RLS in the paper and everything clicked into place. Now she had a name to put to the symptoms, but figuring out a treatment was a whole different journey.

In this episode of the Major Pain podcast, Elaine talks us through her 30+ year journey with RLS and the many medications she has tried to control her disease. The list includes a dopamine agonist, kratom (an herbal extract from Southeast Asia with potential health risks), tramadol (a synthetic opiate) and cannabis. Each medication or herbal remedy brought some relief, but with varying levels of side effects. Elaine consistently found herself moving on from each substance when the negative effects began to outweigh the relief from RLS, and her symptoms have continued to increase in severity over time.

Thankfully, Elaine recently discovered a new treatment that has not only been highly effective, but free from detrimental side effects so far. She traveled to California to see a RLS specialist who prescribed a micro-dose of an opiate called buprenorphine. The dosage is so low that Elaine does not feel the effect of the drug, other than the targeted alleviation of her RLS symptoms. She is finally able to sleep through the night, realizing how sleep deprived she has been for years. Her decades of experience and recommendations are distilled into this podcast episode, in the hopes of helping other RLS sufferers find relief.

When Daniel was 17 years old he began to believe that he was a potential vessel for the Antichrist. Believing he was one of millions of potential vessels, he thought it was his responsibility to chose whether or not he should accept this role and allow his body to be possessed to bring about Armageddon. For 10 years he wrestled with his fate, fighting against this role but worrying it was an inevitability. Then he started to develop concerning symptoms including hearing voices and a severe stutter, which he reported to his doctor.

Daniel's parents both died when he was young, so it took some digging to determine whether he had a history of mental illness in his family. After conferring with aunts and uncles he discovered his father did indeed have a history of mental illness. Daniel began researching what could cause him to hear voices and came across schizophrenia. His research revealed that a common delusion for people with schizophrenia was a belief that one was the Antichrist. He describes this discovery as a psychic shock, hearing and feeling something snapping in his head as his 10 year long delusion unraveled instantly. The checklist for schizophrenia matched exactly with his experiences, and he diagnosed himself before confirming this diagnosis with his doctors.

Getting diagnosed with schizophrenia was the first step in an entirely new journey, cycling through medications trying to control his disease. The first medication he tried made everything worse, triggering visual hallucinations and making the voices in his head louder and more incoherent. Luckily, he has since found better options, but is constantly having to cycle through medications when they eventually lose their effectiveness. He also has to contend with frustrating side effects since these medications are hard on the body, often feeling like he is protecting his mind to the detriment of his body.

In this episode of the Major Pain podcast, Daniel walks us through his history with schizophrenia so far. He teaches us about his disease including the 5 categories of symptoms: delusions, hallucinations, disorganized speech, disorganized behavior/thoughts and negative symptoms. His passion for teaching led him to become a schizophrenia advocate on TikTok, educating the public on the realities of his disease and how negative stereotypes in media have detrimentally impacted countless patients. He proves that people with schizophrenia can live active and full lives, demonstrating the importance of education, awareness and empathy. In just 4 years since his diagnosis he has made massive strides learning to live with his disease, and helped countless others to do so as well.

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The Major Pain podcast was just awarded a creator grant from the Stimpunks Foundation! This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/

The Village Tree Health Support Network (founded by previous podcast guest Toya Jules) is launching it's pilot program! They are looking for individuals diagnosed with hidradenitis suppurativa (HS) to participate in a focus group about this disease. If you live in the US, have HS and are 18 or older, click HERE to sign up.

In 2017 Brad started experiencing multiple falls that became concerning. He went to get checked out and discovered there was a baseball sized tumor growing on his brainstem. This tumor was a meningioma that had been growing for decades, possibly upwards of 30 years. As Brad was rushed to surgery, he was told his tumor would be inoperable if it were any larger. Surgery lasted for 22 hours, and recovery was a difficult process of relearning to walk, talk and think.

Brad made steady progress for about 9 months, but then started falling again alongside new and concerning symptoms. He developed ataxia, a loss of muscle coordination that greatly affected his balance, gait and speech. In a huge blow, Brad learned that he had developed a rare brain disease called hypertrophic olivary degeneration (HOD). When his brain tumor grew, it pressed on the olivary bodies (or olives) in his brainstem. When the tumor was removed these olives swelled, then began to degenerate. There is no cure for hypertrophic olivary degeneration, and Brad was forced once again to relearn to walk and talk, this time greatly impacted by ataxia caused by HOD.

In this episode of the Major Pain podcast, Brad discusses his incredible story of survival and acceptance. He has leaned heavily on the serenity prayer, God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Brad says, "I can't change the past. I can't change that I had a brain tumor. I can't change that I developed a brain disease that has no cure. So what can you do? Accept it. That's what a lot of people have a hard time with. You have to do what you can to make it better or change it." Aided by his wife of 41 years, Brad works very hard to improve himself through physical and speech therapy. He also speaks highly of neuroplasticity, which he uses to retrain his brain. Brad approaches his situation as a challenge to be met and conquered, fueled by his powerful acceptance.

During this podcast Brad shares these important resources for individuals living through brain tumors, ataxia or HOD. Hypertrophic Olivary Degeneration Association (HODA): https://hodassoc.org/National Ataxia Foundation (NAF): https://www.ataxia.org/Rhode Island Ataxia Support Group: https://www.facebook.com/groups/1593227784283343/The Caroline Caprio Scholorship & Giving Fund: https://ccsgf.org/

Kaitlyn is a 23 year old recent college graduate who has been diagnosed with a whopping 14 chronic illnesses. They include Crohn's disease, polycystic ovarian syndrome (PCOS), prediabetes, psoriasis, hidradenitis suppurativa (HS), dermatographism, chronic hives, dysautonomia, hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, cyclic vomiting syndrome (CVS), chronic Lyme disease and long COVID. As you can imagine, dealing with this many illnesses all at once is a remarkable challenge.

In this episode of the Major Pain podcast, Kaitlyn talks us through her many illnesses and how her life has changed since her health flared up. Keeping track of her symptoms and medications is extremely complicated, since it is unclear which illnesses are underlying conditions and which are comorbidities. At one point her disparate doctors mistakenly prescribed conflicting medications that stopped her heart. She has also been told to eat specialized diets for different diagnoses, some of which directly conflict with each other. Kaitlyn is forced to parse through all the information her doctors pass along and advocate for her own best path forward.

During these challenges Kaitlyn has discovered a deep passion for dog training. She tells us about training her own service dog, which she hopes to turn into a career someday. You can connect with Kaitlyn online at https://linktr.ee/Trustingmygut

Our new bonus episode for our Patreon community is now available! Jesse discusses his first COVID experience, and his excitement over Andi diving into his favorite fantasy series. Listen only on PATREON.