Major Pain

When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a years-long diagnostic odyssey that would see Angela diagnosed with several chronic illness including psoriatic arthritis, psoriasis, small fiber neuropathy, hypermobility and more. That burning in her legs was nerve pain caused by small fiber neuropathy. Discussing this disease, Angela says she has a "special place in my heart for that little monster, it helped me get diagnosed with everything else."

In this episode of the Major Pain podcast, Angela educates us on psoriatic disease (psoriasis and psoriatic arthritis) while also recounting her diagnostic journey. The quest to diagnose her multiple chronic symptoms involved horrific medical gaslighting, misdiagnoses and mistreatment. But it also highlights the wonder of finding the right doctor, when she found a neurologist willing to also order rheumatology labs when Angela's own rheumatologist refused to do so. Throughout this process Angela felt internal and external pressure to hide her pain and continue to push through. She discusses the importance of being kind to yourself, self-advocacy and seeking community around chronic illness.

PlayWatch the episode on YouTube, or listen on all major podcasting platforms.

Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges.

Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndrome (POTS), fibromyalgia and more. She is currently being evaluated for Charcot-Marie-Tooth (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system.

In this episode of the Major Pain podcast, Maureen talks us through her health journey so far. Her journey ranges from a spondylolisthesis (spinal vertebra slipping out of place) and a back brace throughout senior year of high school, to years long issues with upper respiratory problems, to a recent brain surgery for hydrocephalus (accumulation of fluid in the brain) and even endometriosis. Maureen now has a shunt surgically implanted in her brain that drains fluid to her stomach. She tells us about going to the Ehlers-Danlos Clinic at the Mayo Clinic, where she learned about the crossover between EDS and fibromyalgia. Through it all, Maureen has cultivated a wealth of knowledge about navigating the medical system, and an incredible attitude of acceptance and perseverance.

PlayWatch the podcast on YouTube, or listen on all major podcasting platforms.

A photo of artist KYRIANNA with her self-portrait

KYRIANNA is a watercolor artist based in southern Oregon, who creates striking images that visualize chronic pain and illness. Since these conditions are often invisible, KYRIANNA provides a profound opportunity for her clients to see a representation of their conditions. Her process involves an in-depth interview that she calls a "therapeutic visualization process," in which she gets to know her clients history and experiences with their condition, while also asking more esoteric questions like, "What color is your pain?" She then translates these answers into realistic portraiture with surrealistic elements layered on top to represent the pain or illness. As you can see from the examples in this article (and on her website KYRIANNA.art) the results are strikingly beautiful and haunting.

Artwork by KYRIANNA

In this episode of the Major Pain podcast, KYRIANNA discusses her artistic process as well as her personal experiences with chronic pain. She lives with a base level of pain every second of every day, mostly in her back, that can flare dramatically and spread throughout her body. Frustratingly, doctors have never been able to pinpoint a cause for her pain. Spinal stenosis (a narrowing of the spinal cord) has been discovered on imaging, but doctors have no idea what might be causing this to occur. KYRIANNA is at a point in her journey where she needs to put down the search for a diagnosis and focus on living in the moment, expressing her journey through her art as a way to both process what she's experienced and detach from her constant pain.

Artwork by KYRIANNA

Hear her story in this week's podcast, and see more of KYRIANNA's work at KYRIANNA.art

Nancy Muir’s diagnosis journey has been more difficult than any marathon she has ever run. During her 24th marathon, Nancy began experiencing hip pain that concerned her enough to seek medical care. She was diagnosed with hip dysplasia, a condition where the hip socket doesn’t fully form or cover the head of the femur.  Nancy was shocked to receive this diagnosis in her 30s, especially since she works as a pediatric physical therapist and had only encountered hip dysplasia in children.

In this episode of the Major Pain podcast, Nancy shares her knowledge of hip dysplasia from a patient and physical therapist perspective. After her diagnosis, she quickly discovered that hip dysplasia intervention is much more challenging in adults than in children. She initially had a labral repair and periacetabular osteotomies (PAO), which involved making cuts in the pelvis. Although this surgery went well, it began a chain of events that required over a dozen surgeries and monopolized a decade of Nancy's life. She has had femoral osteotomies, reconstruction of her labrum using cadaver labrum, L5/S1 spinal fusion, and even circled back around to redoing her initial pelvic osteotomies.

Hip dysplasia challenged Nancy to grow and develop in ways that she never expected. While putting her passion for running on hold to recover from surgery after surgery, she felt like she lost a part of her identity. However, this led her to re-examine and redefine her sense of self, bringing new perspective to her work as a pediatric physical therapist. Nancy's experience with hip dysplasia inspired her to create a patient driven organization called Miles4Hips that educates patients and families about hip conditions and treatment options, and aims to bring the hip community together through meaningful movement. Nancy doesn’t allow hip dysplasia to be a sentence for a lack of movement. Rather, she continues to make strides to overcome in the face of adversity.

Check out Miles4Hips on their website: https://miles4hips.org/

Numbers never made sense to Michelle. She would struggle to follow the steps in a math problem, could not tell time from the face of a clock and could not memorize her multiplication tables. At an early age she was diagnosed as having a learning disability, eventually identified as dyscalculia. This is a condition in which the brain is not wired to process numbers, making it extremely difficult to learn math.

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In this clip, Michelle describes dyscalculia and how it affects her life.

In this episode of the Major Pain podcast, Michelle describes what living with dyscalculia is like while also recounting the challenges of growing up with a little known and poorly understood learning disability. Many aspects of adult life depend on numbers, such as grocery shopping, budgeting, driving and more. All of these activities present unique challenges for Michelle, but over the years she has developed coping mechanisms and adaptations to get by. She has also been diagnosed with visual perception issues and limited hand dexterity. As she puts it, "My brain is just wired differently. So there's just certain things that I can't do, or I need to find a different way to do them."

Growing up with dyscalculia was difficult in many ways. Michelle was bullied throughout school, mocked for her inability to learn math, told she wasn't smart and assured she would never graduate college. Although Michelle's intelligence manifested in many other ways (including her passion for writing), there were still times when the relentless bullying made her feel hopeless. However, Michelle eventually proved her detractors wrong by graduating college and becoming a published writer, as well as becoming a paraeducator to help the next generation of children with learning disabilities to flourish. In this podcast interview she shares tips for navigating the world with dyscalculia, discusses the importance of disability accommodations and helps spread awareness of her learning disability.

Check out Michelle's writing, photography and more on her website: https://www.mrsmichellesmission.com/

This week Kevin returns to the Major Pain podcast to catch us up on his health journey. The big news is that he was recently diagnosed with Ménière's disease, adding one more diagnosis to his already long list. He was also finally approved for disability, and he discusses this process with our host Jesse who also recently won his disability case. They share valuable insights for anyone applying for disability benefits. Kevin also shares how he almost lost an eye due to severe inflammation, and has made huge progress integrating his bipolar diagnosis into his life.

Check out Kevin's original episode here: https://majorpainpodcast.com/a-diagnosis-from-every-category-ankylosing-spondylitis-vestibular-migraines-bipolar-disorder-and-more/

While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how difficult it was for her to communicate to doctors what she was feeling at a young age. As she learned more about her condition, she eventually received the diagnosis of systemic juvenile idiopathic arthritis (SJA), also known as Still’s disease, which causes high spiking fevers, organ inflammation, joint pain, and rashes.

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In this clip, AK describes juvenile idiopathic arthritis, AKA Still's disease.

AK details her diagnosis journey and how her symptoms worsened during high school. She shares her experience with infusions, using a wheelchair due to joint contractures, and surgeries to remove bone fragments. Ultimately, her jaw pain became so severe that she couldn't open her mouth to eat, which led to malnutrition. Further, she was having daily fevers around the same time each day and could hardly get out of bed. As AK grew older, she realized that her doctors were looking at what was on the surface, rather than looking deeper into imaging and why she was experiencing painful symptoms. Through her persistence, she advocated for doctors to find the correct diagnosis and changes in her symptom management. 

In this episode of the Major Pain podcast, AK emphasizes the joy and appreciation she has found through her diagnosis. Just two years ago, AK was at her lowest point in life. However, after studying her condition and advocating for an accurate diagnosis and treatment avenues, she sees how fulfilling life can be. Now, she is living her dream by studying film production and pursuing adaptive skiing. Though there are moments she cannot relive and will undergo joint replacements in the future, AK continues to find beauty in the present.

Donate to AK's GoFundMe to help her purchase a sit-ski rig! https://www.gofundme.com/f/help-alexa-ski-again?member=32197051&sharetype=teams

Check out this interview with our host Jesse on the Grants for Creators Substack! https://www.grantsforcreators.com/p/jesse-mercury?publication_id=708860&post_id=146641097&isFreemail=false&r=1q16dp&triedRedirect=true

A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called 'Addicted to being sad: Teenage girls with invisible illnesses - known as 'Spoonies' - post TikToks of themselves crying or in hospital to generate thousands of likes - as experts raise concerns over internet-induced wave of mass anxiety.' Aside from the fact that Ali was not a teenager, they had used her post about self-injecting rheumatoid arthritis medication (which had amassed 15 million views) as proof that spoonies on TikTok were using their illnesses for likes, encouraging each other to lie to doctors to get the diagnoses they wanted and competing to see who was sickest. (We have not linked to the article to avoid driving traffic to this post.) At first, Ali thought the whole thing was a hilarious misappropriation of the truth. That changed when the negative comments started rolling in, disparaging herself and the other chronic illness warriors whose intentions were being defamed.

In this episode of the Major Pain podcast, Ali shares the ups and downs of her chronic illness journey while recounting her reaction to the Daily Mail ordeal. Ali lives with chronic pain from both rheumatoid arthritis and a mysterious nerve pain in her chest, which she describes as "drop to your knees pain" that "feels like a heart attack." At 31 years old, she has now been in chronic pain for about 10 years. Still, she has managed to travel the world and work as a personal trainer. She describes how chronic illness has shaped every aspect of her life, impacting her work, relationships and identity. Sharing her journey on social media was born from the need to connect with people her age going through something similar, and has resulted in a huge community of spoonies lifting each other up in spite of chronic pain.

Find Ali online at https://www.anotherdaywithra.com/

Sunny did not consider her diagnosis as a major pain, but rather a “major inconvenience,” until she realized how affected her daily life was. Since childhood, Sunny battled to stay awake during the day. She experienced sudden waves of drowsiness and her eyelids feeling heavy, which often would not resolve until she went to sleep. Sunny did her best to stay as busy as possible in order to keep alert. Further, other people normalized her symptoms, stating that teenagers are often tired, require extra sleep, and are “checked out.” At one time, Sunny even believed that this was a part of her personality rather than a symptom. However, this condition was affecting Sunny’s participation in social activities, daily life tasks, occasionally her ability to drive safely, and even job interviews. After years of drowsiness, Sunny was diagnosed with hypersomnia: a sleep disorder that causes excessive sleepiness during the day.

Sunny faced a long and cyclical diagnosis journey. As a child, she verbalized her sleepiness to others, but didn't feel believed. Then as a first-year student in college, people observed her excessive sleepiness, and Sunny felt validated. Sunny was growing increasingly frustrated with having tasks to do but needing to sleep more than others. Therefore, she decided to undergo multiple sleep studies, which came back with insignificant findings. When Sunny was 28 years old, she went to a doctor regarding digestive issues. This doctor not only diagnosed her with SIBO (small intestinal bacterial overgrowth), but sent her to a neurologist due to sleep concerns. She underwent another sleep study, and the doctor determined that she required more sleep than an average adult (hypersomnia). Now, Sunny’s symptoms have improved since her diagnosis and initiating a lifestyle plan that improves her quality and quantity of sleep.

In this episode of the Major Pain podcast, Sunny shares the struggle of living in a world where rest is met with resistance. Despite society’s perception of rest and through her personal healing, Sunny has learned the significance of balancing rest and keeping busy. She affirms how having a diagnosis has helped her and others make sense of what she is experiencing, as well as making lifestyle changes to manage her condition and improving sleep hygiene. Sunny shares insights of the importance of advocating for yourself, showing compassion towards yourself, and resting when you need it. Now, Sunny no longer views hypersomnia as a major disruption nor is she constantly fighting to keep her eyes open. Rather, she is succeeding in navigating her daily activities and making space for all life has to offer. 

Check out Sunny's new astrology Substack: https://sunnyroberts.substack.com/

Avery was gearing up for senior year of college when she began to notice painful changes in her body. Her initial symptoms included difficulty sleeping and intense jaw pain. Avery also began to notice growth in her facial features, hands and feet. She thought these changes could be from another growth spurt or from the stress of being a student athlete. Though these changes challenged her self-esteem, especially as a woman in her early 20s, Avery did not realize these symptoms were reasons to consult with a doctor. That is, until her symptoms intensified and the pain in her jaw became unbearable. After three years of symptoms, doctors diagnosed her with acromegaly: a rare disease caused by a tumor on the pituitary gland that pumps out growth hormone.

A self-portrait by podcast guest Avery Toomes

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In this clip, Avery describes acromegaly.

Avery’s health journey was full of misdiagnoses, costly interventions, unnecessary sinus surgeries, and painful splinting for her jaw alignment. Though a doctor ordered a head CT scan, the tumor on the pituitary gland was missed which led to jaw and sinus treatments. These surgeries did not resolve her symptoms, and Avery began to lose hope of ever finding answers.  Eventually, Avery found a cardiologist who listened to her and referred her to an endocrinologist. As a result, an MRI revealed a three-centimeter tumor on the pituitary gland and blood work revealed high hormone levels. The endocrinologist diagnosed her with acromegaly, and after years of constant pain, doctors performed surgery the following day. Now, just two months after surgery, Avery is almost entirely free from pain.

In this episode of the Major Pain podcast, Avery shares her encounters with doctors, family, and friends who believed her symptoms were “in her head” rather than actual physical symptoms. Being doubted led her to experience self-isolation and feeling as though she was alone in this journey. Avery reveals her struggle with depression and internal blame for her condition. She details her perspective shift from anger at her situation to feeling overwhelmed with support from her loved ones once her tumor was discovered. In her healing, Avery started to look inward to see her beauty and inner strength. Further, Avery shares the importance of advocating for yourself, trusting that your pain is real, and believing in yourself. Now that her acromegaly tumor is removed and is no longer causing bodily growth, Avery is recognizing how this journey has prompted emotional growth in its place.

Subscribe to Avery's Substack: https://substack.com/@averylaaa