Major Pain

Mark's disturbing health problems have been stumping doctors for years. He started having zappy pains in his hands, face and feet, temperature dysregulation, heart rate and dizziness issues. His PCP was quick to blame these symptoms on anxiety, but Mark knew there was something else at work. His gastroenterologist discovered he has enteric neuropathy, a condition in which the functionality of the gut degrades, as well as diminished swallowing capacity. Mark took a manometry test that measures the functioning of his esophagus, and over half of his swallowing attempts failed. Still, his doctors insisted anxiety was the cause.

Through his own research Mark discovered a condition called small fiber neuropathy (SFN). This occurs when the small nerve fibers throughout the body suffer damage, resulting in not only pain but dysfunction of the autonomic nervous system. The best way to test for SFN is to do a punch biopsy, taking a small section of skin to examine under a microscope. Mark insisted this test be done and the results showed severe damage to his small fiber nerves, up to 40% reduction in length. Although this test proved Mark's condition was serious, figuring out what to do next has been difficult.

In this episode of the Major Pain podcast Mark talks us through his frustrating experiences with small fiber neuropathy. SFN can be caused by a variety of conditions including diabetes and autoimmune disease. Finding the underlying cause is the best way to treat SFN, but in Mark's case no cause has been found. He says this makes battling his disease extremely complicated, because if you don't know what you're battling you can't fight the correct way. His research into SFN led him to a national expert, Dr. Anne Oaklander, with whom he is now trialing IVIG treatment to see if it helps. His story highlights the importance of self-advocacy, because the longer SFN goes untreated the more damage it can cause.

Mark mentions a helpful website for understanding SFN and other forms of neuropathy, which can be found at https://neuropathycommons.org/

This Saturday January 27th, Jesse will be participating in a rheumatoid arthritis online summit hosted by previous podcast guest Andrea Dunn. Jesse has pre-recorded a video interview that will play at 1:30PM EST. Click here to register for this free event: https://www.rawyldchyld.com/optin-page

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 ranged from confused to outright dismissive, but Cassie continues to fight for care.

Cassie's health problems started after getting COVID in December of 2021. Her infection was severe, taking 6 months to recover full lung capacity. She started experiencing strange GI symptoms and new food allergies, and almost exactly a year after her initial infection her hands started swelling. Cassie's chronic pain has been present ever since. The current theory is that she has rheumatoid arthritis, but she suspects there is more to the story.

In this episode of the Major Pain podcast, Cassie talks through her mysterious pain journey. Although most of her test results have been unclear, one test that came back with a definitive clear answer was a skin biopsy for small fiber neuropathy. Although Cassie felt validated by the positive SFN test, there are still questions as to what underlying condition is causing her nerve damage. Even though Cassie's life has been frustratingly altered by her chronic illness, there have been a few positive things to come out of it. It has brought her closer to her family, and proven her ability to advocate for herself.

Major Pain is now on Facebook! Follow our new page to share your thoughts on our latest episodes and stay up to date with our growing community. https://www.facebook.com/majorpainpodcast

The new bonus episode for our Patreon community is now available here!

'Maturin' - watercolor art by podcast guest C. Gryph Shepherd Daley

Gryph has been living with dissociative identity disorder (DID) since early childhood, having developed 15 distinct identities or 'alters'. He says, "Many of my alters have been around since the age of 2, so by the time I was diagnosed, they had 20 years of life experiences under their belts." Now 58 years old, he has come to see his interior mindscape as a chorus of voices capable of beautiful harmonies. Before being diagnosed he had been chronically disassociating for years, experiencing huge memory gaps and finding himself in situations he did not remember entering. Since then he has worked to break down the walls within himself to gain access to the memories, skills and experiences of his alters, often experiencing co-consciousness.

In this stunning episode of the Major Pain podcast, Gryph welcomes us into the world of someone living with dissociative identity disorder. He discusses the process of discovering the existence of his alters, and learning to cultivate harmony between them. He shares his opinions on representations of DID in popular media, including 'Moon Knight' and 'Split.' Gryph also lives with several chronic illnesses including fibromyalgia, migraines, anxiety and seizures, and shares how his alters have different experiences of these conditions.

Gryph is a watercolor artist, and you can find his world at https://gryphstuff.com/

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 for federal disability, even though their chronic pain is so severe they are not able to reliably work. In the past year Serena has finally received 2 diagnoses, trigeminal neuralgia (TN) and complex regional pain syndrome (CRPS).

Trigeminal neuralgia is caused by a pinching of the trigeminal nerve, which carries signals from the face to the brain. TN pain can affect any area fed by this nerve. Complex regional pain syndrome develops when the brain mistakenly sends disproportionate pain signals to the site of an injury, after that injury has healed.

In this episode of the Major Pain podcast, Serena discusses their two diagnoses and the struggle to find good care. Since Serena's pain level is always so high, they have focused on silencing their mind through meditation in order to get through the day. Their driving focus is to be there for friends and family, amplify awareness of their diagnoses, and help others to have their stories heard.

Juvenile rheumatoid arthritis refers to an onset of autoimmune arthritis at a young age, which happened to Andrea when she was just 10 years old. She had been experiencing severe TMJ, wrist and knee pain, but doctors did not realize she had juvenile RA throughout her childhood. She was finally diagnosed clinically with rheumatoid arthritis at 24 years old, even though her test results were all negative. Although she was relieved to finally have a diagnosis, there was a part of her that always doubted whether or not she actually had RA.

For years Andrea struggled with this doubt, until she realized that she didn't need external validation to live life to the fullest. Since then she has devoted herself to finding creative ways to tackle her RA pain, and helping others to do so. Over the decades since Andrea was diagnosed, huge advancements have been made in RA testing. Now in her mid 40s, Andrea recently received new testing in which her RA was definitively proven.

In this episode of the Major Pain podcast, Andrea talks us through her history with RA. She discusses some of the alternative forms of therapy that have transformed her life, including the use of essential oils and pulsed electromagnetic field therapy. Although her RA journey started with pain and confusion, it has become a source of self-realization, empowerment and advocacy.

Connect with Andrea online at https://www.rawyldchyld.com/

Check out an amazing resource mentioned in this episode, teaching readers how to get on disability services: https://howtogeton.wordpress.com/

Every time Isobel has a medical test done, she has her fingers crossed that something will come back abnormal. She has been living with flare-ups on and off throughout her life, starting after a severe viral infection when she was 9 years old. Her symptoms include extreme fatigue, dizziness, brain fog, joint pain, muscle cramps, patches of burning red skin and more. She has received several diagnoses including myalgic encephalomyelitis (chronic fatigue syndrome), postural orthostatic tachycardia syndrome (POTS), vestibular migraines and small fiber neuropathy, but none of these diagnoses have led to meaningful treatment.

In this episode of the Major Pain podcast, Isobel talks us through her health journey so far. Her illness flared-up significantly after contracting COVID-19 at the beginning of the pandemic, and she has required the use of a wheelchair since then. She discusses how grateful she is that the wheelchair is currently increasing her quality of life, in contrast with her first period using a wheelchair as a teenager when the emotional impact of needing a mobility aid was overwhelming. Her frustration with the lack of disability representation online led her to create a TikTok series called 'The Ramp of Approval,' where she rates the accessibility of venues throughout London. Although she is still hoping to uncover a driving force behind her chronic illness, she is currently directing her focus towards living the fullest life possible within her limitations, since she does not want to write off any future chapters of life.

When Chanda Hinton was 9 years old she suffered a spinal cord injury due to an accidental discharge of a firearm. This moment would forever alter the course of her life, but looking back, Chanda isn't sure she would change anything. Her work as a disability advocate has altered countless lives, not just by founding the Chanda Center for Health but by changing Colorado law.

Chanda was accidentally shot in the back of the neck between the C5 and C6 vertebrae as a child, when a young boy picked up a gun and it discharged. At 9 years old Chanda was thrust into the traditional medical model. She was told all of the secondary conditions she might experience as a spinal cord injury survivor, given medications, given a wheelchair, and ushered out the door. In her words, "The over-utilization of that very rigid, non-proactive, non-preventative model resulted in me getting very very sick when I was 21." She had been experiencing chronic pain in her chest, lower abdomen and lower back, and was given opioids without any effort to uncover the root of her pain. Her health deteriorated until she was bed-bound in constant agony, weighing only 59 pounds.

At that point she discovered integrative therapies like acupuncture, chiropractic care, massage and physical therapy, and her life completely turned around. No doctors had thought to integrate movement and body work into her care, which made all the difference in the world. Chanda then devoted herself to gaining access to these services for others. She went to the Colorado legislative body and convinced them that providing integrative therapies to medicaid patients would actually save state dollars, since individuals would be healthier overall and require fewer services. This legislation was passed in 2009, and expanded in 2021 due to it's success.

In this episode of the Major Pain podcast we sit down with Chanda to discuss her incredible journey and advocacy. She describes reaching out as an adult to the person who accidentally shot her, looking to find peace from the horrific accident that so deeply affected both their lives. She also tells us about the Chanda Center for Health, a 6000 square foot facility in Colorado where people with disabilities get disability competent healthcare.

Visit the Chanda Center online at https://chandacenter.org/

The new bonus episode for our Patreon subscribers is now available! Click this link to listen if you are subscribed, or sign up to gain access. https://www.patreon.com/posts/december-bonus-93867431

In 2005 Tracey was in a car crash that completely changed her life. She immediately developed slurred speech and an ice-pick headache right through the center of her brain. At the emergency room she was diagnosed with a concussion and sent home, but things only got worse from there. She developed aphasia and ataxia, falling constantly from balance issues and discovering that the words in her mind were not matching the words she would speak out loud. As if this weren't strange enough, she also started urinating constantly. It became impossible to stay hydrated, as Tracey was urinating upwards of 16 liters per day.

After years of suffering and being ignored by doctor after doctor, Tracey took it upon herself to research the cause of her disabling symptoms. Her research led her to central diabetes insipidus (CDI), a form of diabetes that affects water regulation rather than blood sugar. When the hypothalamus at the back of the pituitary gland is injured, it can disrupt the production of a vasopressin (also called antidiuretic hormone), which regulates water balance and blood pressure. Although this is a known risk factor for brain surgeries, new research is linking the condition to head trauma. There may be millions of people suffering from transient or permanent diabetes insipidus without their knowledge. Tracey was close to death by the time she finally convinced a doctor to administer a water deprivation test which proved her condition.

In this episode of the Major Pain podcast, Tracey talks us through her remarkable journey. Once she was finally diagnosed, a simple nasal spray treated her diabetes insipidus. The first time she tried the nasal spray, it felt like her brain was a dried up sea sponge finally exposed to water. Her ice-pick headache and slurred speech were gone within 20 seconds. Tracey is now applying her regained strength and energy to raising awareness of diabetes insipidus, so others won't have to suffer the medical negligence and ignorance she endured.

Read Tracey's story on the NORD website: https://rarediseases.org/rare-resilience-traceys-story-in-honor-of-rare-disease-day/

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/

The Stimpunks Foundation exists for the direct support and mutual aid of neurodivergent and disabled people. Oftentimes that can look as simple as just giving people cash, as studies have shown that no strings attached financial aid is one of the most effective ways to prop up individuals in need. But the Stimpunks are also building their website into an invaluable resource for their community, mining studies for relevant research and making that knowledge accessible for all, while also building a glossary of vocabulary that helps people engage with the latest research. Their organization is founded on four pillars: mutual aid including direct giving, creating a learning space for anti-ableist education, creator grants and supporting research efforts.

In this episode of the Major Pain podcast we sit down with Stimpunks co-founder and creative director Ryan Boren and executive director Chelsea Adams to learn about their mission and the history of their organization. They also share a bit about their own health journeys, as they both live with a constellation of health challenges. For Ryan this journey has involved benign fasciculation syndrome (which is horribly misnamed considering the non-benign nature of the symptoms), neuromyotonia and stiff person syndrome. For Chelsea, she struggles with the combination of a traumatic brain injury (TBI), migraines, mental health challenges and body pain issues, while learning about her own neurodivergence.

While this episode gives you a general overview of the Stimpunks organization, you can learn much more on their website at https://stimpunks.org. Major Pain is a proud recipient of a Stimpunks creator grant. You can request a grant to fund a disability/neurodivergence related creative project here: https://stimpunks.org/creators/