Major Pain

By Jesse MercuryHealth & Fitness

Major Pain episodes

August 30, 2023 Jesse Has a Diagnosis!
Jesse finally has a name for his mystery illness, as he was recently diagnosed with mast cell activation syndrome (MCAS). Andi joins him for a discussion on how this diagnosis came to be. They also discuss the progress on Jesse's small fiber neuropathy examination, disability hearing and first experience having COVID.
1 hr 19 min
August 23, 2023 MS Advocate Sam Salvaggio Discusses Her Health Journey and Shifting Diagnosis
At 19 years old, Sam Salvaggio had a strange day where her body suddenly felt off. She was woozy, and everything slowed down as if she were moving through molasses. Even though it was a cold day she sweat through all her clothes, then went home and slept for 20 hours straight. She finally woke up with double vision, numbness in her face, issues walking and was unable to use her right hand. Rushing to the emergency room, she learned she had brain lesions characteristic of MS (multiple sclerosis). A trip to the neurologist would confirm this diagnosis.
17 years later, Sam has made great strides learning to live with MS. This disease is characterized by the immune system mistakenly attacks the central nervous system, causing damage to the brain, spinal cord and optic nerve. Sam was originally diagnosed with the most common form of MS, relapsing-remitting. During relapses Sam experiences a wide range of functional symptoms, but would return to baseline during remitting periods. For the past two years she has been noticing changes to her functionality, which led to the recent diagnostic shift into active secondary progressive MS. This means she is accruing damage during her relapses, resulting in weaker areas of her nervous system and a progressive symptom picture.
In this episode of the Major Pain podcast, Sam talks us through her journey so far with MS. Coping with the mental health toll of a degenerative disease is always challenging, and Sam has needed to grieve many times along her journey. She tells us about trying to keep up with her peers during her college years while privately struggling through feeling like a burden. It would take years to find acceptance, and begin the process of adjusting her lifestyle to incorporate healthy eating, good sleep habits and exercise. MS medications have improved since Sam was diagnosed, and she has cycled through 8 different medications over the years. Now Sam finds great joy working as an MS advocate, publicly sharing information about her disease as well as useful tips for others going through similar journeys.
Connect with Sam online at https://www.samanthasalvaggio.com/
1 hr 7 min
August 09, 2023 An Experimental Cocktail Helped Rohan Recover From Long COVID
Rohan contracted COVID-19 right at the beginning of the pandemic in March of 2020. A few weeks later he suffered a transient ischemic attack (TIA) also called a ministroke as a result of his infection. Although he recovered from the TIA, COVID was another story. His situation deteriorated into long COVID, experiencing a progressive period of mental and physical symptoms that became completely debilitating.
Eventually, Rohan decided to start applying skills he had acquired as a neuroscientist to search for treatment avenues to explore. His research repeatedly led him to the hypothesis that long COVID was caused by persistent virus lingering in the body. Inspired by HIV treatment using multiple medications at the same time to combat persistent disease, he wondered if a similar approach could be used to target COVID lingering in his body.
In early 2022 Paxlovid had been released. Although this drug is meant to slow replication of an active COVID infection, Rohan convinced his doctor to let him try it for long COVID. He felt some initial relief during his course of Paxlovid, but symptoms bounced back immediately after. This made him wonder about combining Paxlovid with some sort of targeted antiviral. His white blood cell count was low enough to qualify him to use Evusheld, an experimental COVID prophylactic medication made up of two different monoclonal antibodies. He experimented combining Evusheld and Paxlovid and felt amazing for about 10 days before symptoms slowly crept back. He tried two more treatments with this cocktail, and was amazed that his symptoms faded and never returned. It has been about a years since this cocktail brought him into remission.
In this episode of the Major Pain podcast, Rohan talks us through this experimental treatment and the results he experienced. He is currently working with a nonprofit to organize a clinical trial, to see if others with long COVID will experience similar results using this cocktail. While it is too soon to say if this treatment regiment will translate to other people, Rohan is passionate about continuing to study this potential avenue of treatment.
In this podcast Rohan also discusses an HRV biofeedback device he invented called the Lief. This device gives you a data driven approach to meditation, which he calls meditation with training wheels. Major Pain listeners interested in trying this device can get 15% off at https://getlief.com/ using the code 'MAJORPAIN.'
1 hr 15 min
August 02, 2023 Christine’s Mysterious Chronic Pain: Searching for the Underlying Cause
Christine has been experiencing mysterious chronic pain since she was a teenager. It feels like her joints are grinding across each other, occasionally locking up so she cannot move. A few years ago her hip locked up in the middle of the night so she went to the emergency room. Doctors brushed off her pain as sciatica, telling her to go home and ice her hip. When that didn't help she sought out a primary care provider to dig deeper. Although this may seem like a normal next step, for Christine it was a huge leap.
During her childhood, Christine's mother did not trust doctors and did not allow her daughter to seek medical care unless it was an extreme emergency. This meant that Christine did not have her own primary care provider until she was 24 years old. An added difficulty is that Christine no longer has any blood relatives she can ask about medical history. She has done her best to piece her history together, but there are huge gaps in her knowledge.
In this episode of the Major Pain podcast, Christine discusses her diagnostic journey so far. Her care team has discovered that she has unusually progressive osteoarthritis for her age, leading them to believe there may be an underlying condition affecting her body. She is now exploring the possibility that she may have Ehlers-Danlos syndrome (EDS), since she experiences hypermobility, translucent skin and heart-rate spikes after standing. Although there are days her health gets her down, she reminds herself that one bad day does not equal a bad life, and continues to advocate for answers.
Our previous guest Toya Jules has launched the Village Tree health support network! Learn more here: https://villagetreehealth.org/
54 min
July 26, 2023 Surviving Multiple Chronic Illnesses, Surgeries, a Coma and Being Pronounced Dead, Angela B. Brown Feels Blessed to Be Alive
Angela B. Brown has lived through a remarkable amount of health challenges. She says she has been a patient since day one, since she was born with three holes in her heart that have required multiple open-heart surgeries. Her chronic illnesses include a kidney disease called IGA nephropathy, a lung disease called tracheomalacia, diabetes and asthma. Her doctors warned her that catching COVID would be disastrous due to her many preexisting conditions. When Angela eventual contracted COVID she ended up on a ventilator, falling into a coma for 10 days. Her primary care doctor assumed there was no way Angela would survive, marking on her chart that this patient he'd been seeing for 30 years was deceased. When Angela awoke from her coma, she had to convince the front desk at her PCP's office that she was indeed alive.
In this episode of the Major Pain podcast, Angela recounts her incredible story of resilience and survival. At one point she was in a car accident that caused extreme neck pain. Her doctors brushed it off for months as whiplash, until it was eventually discovered she had been walking around for 6 months with a broken neck. She recounts the anger she felt that she had been ignored, one of many times throughout her journey that doctors refused to listen. It's logical to assume she might feel incredibly unlucky to have been dealt so many health challenges, but Angela feels blessed to still be alive and watch her daughter grow up.
Connect with Angela online at https://linktr.ee/dreamlifebyangela
The bonus episode for July is now available to our Patreon members! LISTEN HERE
1 hr 6 min
July 19, 2023 Living With Myasthenia Gravis and Endometriosis
Dana experienced medical gaslighting for the first time when they were just 10 years old. A doctor accused them of making up their symptoms for attention, telling Dana's mother they needed to be disciplined more. Dana promised themself they wouldn't go back to the doctor unless they absolutely had to, but progressing symptoms made that an inevitability. It has been an uphill fight for Dana to receive proper care, but at 30 years old they now have two diagnoses of endometriosis and myasthenia gravis (MG).
Myasthenia gravis is an autoimmune condition in which antibodies destroy the communication between nerves and muscle, resulting in weakness of voluntary muscles throughout the body. For about 8 years Dana had been experiencing frightening episodes of extreme weakness, feeling so heavy they would be trapped on the couch for hours or even days at a time. For years doctors completely ignored these symptoms and Dana didn't know where to turn for help. Finally, they saw a TikTok discussing myasthenia gravis that resonated with their experience, including the common occurrence of drooping eyelids (called ptosis). Dana had been experiencing ptosis, but thought it was just due to exhaustion. When they mentioned this symptom to a neurologist the connection was made to an eventual MG diagnosis.
In this episode of the Major Pain podcast, Dana shares their health journey with myasthenia gravis and endometriosis. They discuss having excision surgery at 26 years old, in which stage 2 and stage 3 endometriosis was discovered. Dana was only diagnosed with MG last year, but has found immediate relief from taking the medication pyridostigmine (mestinon). Unfortunately, muscle weakness has severely affected their work as a cinematographer, since holding heavy camera equipment is challenging. Being forced to spend so much time sitting still has led to new interests, including practicing drag makeup and the art of Tatreez, Palestinian cross stitching.
Find Dana's cinematography work online at https://www.danashihadah.com/
1 hr 25 min
July 12, 2023 Beth Ruffin on Balancing Work Life With Health Challenges
Beth Ruffin owns a consulting business that teaches diversity, equity and inclusion in professional spaces. She focuses on self-empowerment, helping people learn to include themselves. Although Beth is extremely passionate about her work, finding the right work-life balance has been challenging since she lives with three chronic health conditions: fibromyalgia, anxiety and depression.
Getting a fibromyalgia diagnosis was a frustrating journey for Beth. After three years of dealing with symptoms, she ended up traveling to the Mayo clinic where she was eventually diagnosed. Her doctors told her to lose weight and stop consuming alcohol and sugar, then sent her on her way. It wasn't until Beth joined support groups online and discovered a sympathetic local doctor that she finally started to make progress, learning to accept her disease and integrate it into her life.
In this episode of the Major Pain podcast, Beth discusses her chronic illness journey and balancing her professional life with her health challenges. She says the best thing she's learned to do is listen to her body, tracking how much work she can handle and enforcing limits on her work hours. She opens up about her challenges with anxiety and depression, including panic attacks that require medication. Beth also discusses the idea that rest is revolution, and the importance of focusing on impact versus productivity.
Discover Beth's diversity, equity and inclusion practice at https://bethruffin.com/
48 min
July 05, 2023 Karra Eloff on Maintaining Joyful Relationships in Spite of Chronic Illness or Chronic Pain
Karra Eloff wants to help individuals living with chronic pain or chronic illness maintain joyful relationships. She is the author of The Chronic Pain Couple: How To Be a Joyful Partner & Have a Remarkable Relationship in Spite of Chronic Pain. Her book is the result of years of research, inspired by her own health journey.
Karra was an avid jogging enthusiast that had been married for about a year when she collapsed one day while furniture shopping. She went to the doctor complaining of intense hip pain, which was brushed off as a running injury. It would take about 3 years of progressive symptoms to learn she actually has spondyloarthritis, an umbrella term for several diseases including ankylosing spondylitis and psoriatic arthritis. Her diagnostic journey was full of traumatic medical gaslighting and deep sadness, leaving her wondering how to find the energy to love and support her partner while in survival mode.
Karra began researching couples and chronic pain, hoping to find a blueprint of practical steps for couples to take. Her focus had been on reducing pain and managing symptoms, but she learned that tending to the mental health of both partners was a crucial tool she had been overlooking. Since no practical blueprint seemed to exist, she spent several years developing one and writing her book.
On this episode of the Major Pain podcast, Karra discusses her process of injecting joy into relationships touched by chronic illness or chronic pain. She discusses making space for joy within these relationships by addressing communication, intimacy and mental health, hoping her work will help others feel loved in spite of health challenges.
Find Karra's work online at https://www.chronicpaincouple.com
1 hr 8 min
June 28, 2023 Severe Diverticulitis Almost Claimed Erik’s Life
18 years ago Erik was told he had the beginnings of diverticulitis, a condition characterized by inflammation of small pouches in the digestive tract. From then on he avoided foods like popcorn or seeds that could get caught in these pouches and cause infection. Besides these dietary restrictions, diverticulitis didn't play much of a role in his life until it nearly killed him almost two decades later.
Recently, Erik started experiencing intense pain in his bladder that he thought was due to a particularly bad kidney stone. (Regular podcast listeners will remember Erik's first episode discussing his chronic kidney stones, having passed over 400 stones and counting.) This pain intensified until he collapsed at home. His wife offered him the choice to call an ambulance or drive to the ER. Since Erik couldn't stand back up, an ambulance was called and they rushed to the hospital.
Erik's diverticulitis had become so severe that his entire digestive tract was infected, his blood had gone septic, his organs were beginning to fail and he was minutes away from dying. His doctors said if he'd chosen to drive to the ER, he would have died in the waiting room. He was rushed into emergency surgery, waking up 8 hours later with a 10 inch incision in his stomach, a tube coming out of his right side with a negative volume ball attached, a catheter and a colostomy bag, thinking to himself, what happened?
In this episode of the Major Pain podcast, Erik returns to the show to tell us about the medical crisis that almost claimed his life. He is incredibly lucky not only to be alive, but to be eligible for robotic surgery to reconnect his digestive tract once his wound heals. He is currently hooked up to a wound vac to ensure his incision heals from the bottom out. He shares how using a colostomy bag has completely changed his opinion of them for the better, and reflects on how close he came to death.
1 hr
June 21, 2023 Living with Cyclic Vomiting Syndrome
Raven’s journey to be diagnosed with cyclic vomiting syndrome (CVS) was deeply traumatic, not only due to their debilitating disease but from the way doctors treated them along the way. CVS is characterized by episodes of intense vomiting that can be severe enough to warrant emergency care. Raven says it’s not just throwing up, it’s constant vomiting that you cannot stop, which becomes dry heaving when you are depleted of all food and fluids.
Raven first started experiencing episodes of cyclic vomiting when they were just 6 or 7 years old, but had no idea why it was happening. These episodes followed them into adulthood, where they discovered that medicinal cannabis provided relief for some symptoms. They disclosed this to a doctor, one of many who brushed off their symptoms as being anxiety related. In fact, this doctor listed on their chart that Raven was an illicit drug user with an eating disorder. Instead of providing any help for Raven’s then-mysterious ailment, this doctor doomed Raven to years of extreme prejudice and neglect from future healthcare providers.
Through researching symptoms Raven found cyclic vomiting syndrome as a potential diagnosis, but it would be years before any doctor would listen to this hypothesis. When they finally convinced a doctor to test this theory, CVS medication proved extremely effective. Their disease is now in remission and their diagnosis has been officially recorded. Although this moment was deeply validating, it also brought up deep anger that Raven wasn’t listened to sooner.
In this episode of the Major Pain podcast, Raven talks us through their torturous diagnostic process and teaches us about their rare disease. They tell us about the three types of CVS, the migraine variant, seizure variant and mitochondrial cell defect. Now that they can keep down food and water thanks to their CVS medication, they are trying to figure out how to deal with the emotional and physical trauma they have endured. Raven hopes that by sharing their story, others with CVS will be able to hear from at least one other person who has lived through something similar.
The June bonus episode for our Patreon community is now available, click to listen.
PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
PATREON: https://www.patreon.com/majorpainpodcast
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1
SOCIAL MEDIA
INSTAGRAM: https://www.instagram.com/majorpainpodcast
TIKTOK: https://www.tiktok.com/@majorpainpodcast
YOUTUBE: https://www.youtube.com/@MajorPainPodcast
FACEBOOK: https://www.facebook.com/majorpainpodcast
AFFILIATE LINKS
RARE PATIENT VOICE: https://rarepatientvoice.com/MajorPainPodcast
AMAZON SHOP: https://www.amazon.com/shop/majorpainpodcast
NEURAHEALTH: https://www.neurahealth.co/majorpain
1 hr 15 min

About Major Pain

From the publisher's feed

The Major Pain podcast is a collection of interviews from people living with chronic illness and disability. Our goal is to spread awareness, empathy and community around experiences often lived…