Major Pain

Kait lives with miserable malalignment syndrome, which means that the bones in her legs are rotated abnormally. Since childhood her femurs were pointed inwards while her tibias rotated outwards, causing her knees to face each other. Even though this rotation was plainly visible to the naked eye, it still took decades for Kait's condition to be diagnosed.

Not much is known about miserable malalignment syndrome. It's possible Kait's condition was caused by a birth defect or by a genetic predisposition. She first noticed her legs looked different than her classmates at 13 years old, which is around the time she started experiencing chronic pain in her hips, knees and ankles. Kait's passion for jogging led these pains to worsen over the years. In her early 20s she was in so much pain that she struggled to do basic tasks like getting in and out of the shower or putting on pants. That's when she finally began to seek help.

In this episode of the Major Pain podcast, Kait discusses her journey with miserable malalignment syndrome, including finally being diagnosed at 27 years old. After a lifetime of being told her issues were her own fault and that she just needed to strengthen her joints, she found a specialist who took one look at the way she was sitting and knew immediately she had malalignment. She chronicles the many surgeries she has undergone, first to correct repeated labral tears (the labrum is the cartilage that surrounds the joints) and eventually to correct the rotation of her femurs and tibias. These surgeries are called osteotomies, and involve breaking, rotating and resetting the major leg bones. The alignment of one leg has been completely corrected, and she will soon repeat the process for the other leg. Kait is already noticing a huge reduction in pain in the corrected leg, and is very optimistic she will be able to return to jogging once her second leg is corrected.

Connect with Kait on Instagram @alignedk8, or read an article about her story here: https://miles4hips.org/kaitlyns-story

Drawing by podcast guest Colby.

Colby has 11 chronic illness and mental health diagnoses. These include chronic pain (currently diagnosed as fibromyalgia), PCOS (polycystic ovarian syndrome), asthma, IBS, eczema, PTSD, depression, anxiety, bipolar, ADHD and somatic symptom disorder. That last diagnosis might be the least well-known of Colby's illnesses. According to psychiatry.org, "somatic symptom disorder is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning." For Colby, that means that thinking about their physical symptoms can make that symptom worse.

Colby has amassed a toolbox they use to manage somatic symptom disorder and their other diagnoses. They say, "It's very much...training your brain to think the way you want it to. It's still very overwhelming, just because I already have all these symptoms, I have all these disorders, I have all these medications to take care of, and then I have to make sure that doctors are talking to other doctors that are talking to my psychiatrist that are talking to my counselor." To keep up with this complicated situation, Colby keeps a chronic illness notebook. This helps not only to keep things straight in future doctors visits, but also to get the information out of their brain when it is put on paper to focus on other things.

In this episode of the Major Pain podcast, Colby discusses their multitude of chronic illnesses and how these diagnoses interact with somatic symptom disorder. They share the history of how this situation developed, including thinking it was normal to be in extreme pain every day throughout childhood. Colby feels there may be an underlying condition like a connective tissue disease that has yet to be discovered, but works hard to quell thoughts of health uncertainty. Colby also discusses the passions and past-times that help them power through, like writing fan fiction and playing video games.

Connect with Colby online at https://linktr.ee/mergoatink

DeAnna Pursai and her sister Angel describe themselves as a package deal. A foundational experience growing up in rural Indiana was when DeAnna went off to college, but Angel was left behind due to her disability. After age 22, adults with disabilities age out of national education programs in the US. This was devastating for Angel, who's only option was to attend a day program that was more like a nursing home than a college experience. The bullying Angel experienced at this day program caused trauma that still haunts her. DeAnna lived these experiences vicariously through her sister, and made it her mission to provide ongoing education to adults with disabilities.

DeAnna co-founded the College of Adaptive Arts with Dr. Pamela Lindsay, which is now in its 15th year of operation. This college provides an equitable, lifelong college experience to adults of all abilities who historically haven't had access to college education. CAA offers 1-hour classes in 10 schools of study including visual arts, business, communication, science, technology and more, both online and in-person at their campus in Saratoga, CA. Students need only a desire to learn to earn full credit. While they do graduate and receive a diploma, students are encouraged to re-enroll and keep learning as long as they have interest.

In this episode of the Major Pain podcast we sit down with DeAnna and Angel to learn about the College of Adaptive Arts. Angel shares what it felt like to be left behind when her sister went off to college, and her pride that she has helped create this path to continued education. Angel's favorite classes are adaptive guitar, computers and clay animation, and she even shares some freestyle rapping. DeAnna discusses the history of CAA, and how Angel has been her inspiration. Her vision for the future is to apply this teaching model as a layer of education at all college campuses, building a global infrastructure of lifelong learning for adults who traditionally haven't had access.

Learn more about the College of Adaptive Arts or donate to support this program at https://www.collegeofadaptivearts.org/

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.

MaKenzie has received a slew of chronic pain and chronic illness diagnoses over the years, including Chiari malformation, lupus, Sjogren's disease and Hashimoto's syndrome, but she isn't focused on her diagnoses. She's focused on managing the daily impact of her symptoms and the emotional toll this journey has taken. She says, "The damage of living a life like that for the better part of 15 years takes a toll on you mentally, emotionally, spiritually, physically, it's been a long, long road."

In this episode of the Major Pain podcast, MaKenzie walks us through her journey and the recent changes that have allowed her to begin healing. She tells us about receiving brain surgery at 21 years old for a severe Chiari malformation that was pushing her cerebellum down 32mm. She also discusses the rheumatologist who didn't read her chart to realize she'd tested positive for lupus, and how her faith and parenting has been tested by this journey. Thankfully, MaKenzie is now in the hands of a functional medicine team that is finally helping her to heal. Her experiences have pushed her to become a social media advocate for other chronic illness and chronic pain patients.

Connect with MaKenzie online here: https://stan.store/hopeforhealingwithmakenzie

For Meresa, one of the hardest parts of living with mast cell activation syndrome (MCAS) is the daily uncertainty. She says, "It's still such an everyday variable disease. It really sucks a lot of the time. It's really painful. People don't understand what it is, they don't always understand what you're dealing with. You could look totally normal and feel miserable."

Mast cells play a vital part in the immune system. They release chemical mediators into the blood stream when the body is exposed to allergens. In fact, there are over 1000 mediators that mast cells can produce, including histamine and tryptase. But in mast cell activation syndrome, these cells overreact to a wide variety of stressors and can cause severe and systemic health problems. It can be extremely difficult to diagnose and treat due to the diverse individuality of how it affects people.

Meresa was lucky to have an MCAS literate doctor who diagnosed her very quickly after her health issues began, but almost a decade later she is still struggling to manage her MCAS flares. She experiences joint and nerve pain on top of severe allergic symptoms, and has been to the ER several times for anaphylactic episodes.

In this episode of the Major Pain podcast, Meresa talks with podcast host Jesse Mercury who also has MCAS. They commiserate over their shared illness, comparing and contrasting not only their lived experiences but also their medication regiments, both prescription and naturopathic. Living with a disease like MCAS can be extremely isolating, but hopefully listening to this conversation can help others going through something similar to feel less alone.

This week on the Major Pain podcast, our host Jesse is interviewed for a change! This interview is taken from a recent rheumatoid arthritis summit hosted by Andrea Dunn. She asks Jesse what inspired him to create the Major Pain podcast, inquires about his health journey and recent diagnosis of mast cell activation syndrome (MCAS) and small fiber neuropathy (SFN), and asks what he would recommend for anyone searching to diagnose a mystery illness.

After fighting for a diagnosis for over a decade, Jesse has a lot of experience dealing with the medical system. He shares many tips for others seeking their own diagnosis, including applying for disability right away and seeking care at a teaching hospital to be closer to the latest medical research. He also discusses the importance of having mental health support throughout the diagnostic journey, and how his relationship with his partner Andi was challenged by his illness.

This interview was conducted by Andrea Dunn during her recent RA Summit. Find her online at https://www.rawyldchyld.com/

Ezra lives with collagenous gastritis (CG), one of the rarest conditions we've ever covered on the Major Pain podcast. Collagenous gastritis is characterized by a buildup of collagen in the digestive tract, which causes bumps or nodules to form. The most common symptoms are abdominal pain and anemia.

Ezra has been living with gastrointestinal issues since they were about 10 years old, when they were diagnosed with Crohn's disease. This is an autoimmune condition in which the body attacks the gastrointestinal tract. When Ezra first started experiencing symptoms of collagenous gastritis they assumed it was just their Crohn's disease acting up, but their doctor did a scope and discovered nodules. A biopsy revealed these nodules were not Crohn's related, but Ezra's doctor was completely stumped as to what they might be. Their doctor spent the next 5 years fighting to find an answer, even asking colleagues at conferences if they had heard of similar findings. Eventually this doctor discovered the little-known disease collagenous gastritis, and Ezra's test came back positive.

In this episode of the Major Pain podcast, Ezra tells us what it's like to live with this exceedingly rare disease. They have been told that only 200-1000 people have ever been diagnosed with collagenous gastritis. Ezra discusses the steps they have taken to treat CG including medication and diet, and how their two gastrointestinal diagnoses conflict with each other.

Marie's road to developing pudendal neuralgia is long and complicated. Pudendal neuralgia is a chronic pain condition involving damage to the pudendal nerve, which is the main nerve that branches to the genitals. Marie now lives with constant pain that is worsened by sitting, so she is forced to either lie down or stand to keep her pain at a minimum. This is just the latest in an aggravating history of problems, a perfect storm of rare issues that has culminated in Marie's current situation.

In this episode of the Major Pain podcast, Marie discusses the road that led to her pudendal neuralgia. She talks us through her rare reaction to the birth control pill that caused vulvodynia (pain of the vulva) and interstitial cystitis (inflamed or irritated bladder wall). Then she developed a severe UTI and rare fungal infection that was resistant to treatment, before learning she had clitoral adhesions and keratin pearls that required surgery. About a week after surgery she noticed a shooting pain radiating from her groin, and discovered a patch of painful, inflamed skin. This pain branched along the pudendal nerve, and marked the beginning of her constant pain with pudendal neuralgia.

These events drastically altered the course of Marie's life, made worse by the fact that the personal nature of her affliction is little studied and often hidden. She decided to start discussing her situation on social media under the handle MySecretLifeOfPain, building community and raising awareness around genital health issues. She is continuing to research and explore new avenues of treatment, hoping to find resolution or at least improvement in her constant pain.

A pituitary adenoma is a tumor on the pituitary gland that secretes prolactin (also called a prolactinoma). For some people these tumors can be harmless and go unnoticed, but for others it can cause severe symptoms. For Andi it caused extreme hormone dysregulation, exhaustion and mental health challenges, including depression, intrusive thoughts and a spike in her OCD.

Andi first discussed her pituitary adenoma on the Major Pain podcast two and a half years ago. Since then she has tried to control her prolactin level through medication (first cabergoline and then bromocriptine), but the dosage required caused side effects even worse than the symptoms of her adenoma. After reaching a breaking point with the medication, she decided to move forward with surgery.

On this episode of Major Pain, Andi returns to the podcast to discuss her pituitary adenoma surgery. Deciding that surgery was her best course of action was an extremely difficult decision, in fact she had not fully decided to go through with it when first scheduling the procedure. She shares her experience with the surgery itself, the recovery process, and how she is feeling post recovery. Hopefully her lived experience can help others make an informed choice if they are considering pituitary adenoma surgery.

Andi's original episode can be found here: https://majorpainpodcast.com/living-with-a-pituitary-adenoma/