In 2017, Jo began experiencing intense pain under her rib cage that traveled to her back, as if she was being impaled. She had complained of various pains throughout her life that doctors always brushed off, so at first she had no desire to seek professional help. But after two weeks of this stabbing pain, something had to be done. She was expecting doctors to run tests and once again tell her everything was normal, but was shocked when they discovered acute pancreatitis.
Pancreatitis refers to inflammation of the pancreas and can have many causes. For Jo, her pancreatic ducts had narrowed, backing up the normal flow of enzymes and causing intense pain. Jo says this was the tipping point that caused the rest of her body to go haywire. Since then her list of diagnoses has grown dramatically to include Sjogren’s syndrome, small fiber neuropathy (SFN), mast cell activation syndrome (MCAS), cervical cranial instability (CCI) and several other conditions. She has also found an explanation for her various pains throughout her earlier life, after being diagnosed with the genetic connective tissue disease Ehlers-Danlos Syndrome (EDS).
In this episode of the Major Pain podcast, Jo talks us through some of her intense medical journey so far. Her pancreatitis has transitioned from acute to chronic, and is being managed through injections to block the celiac plexus nerves in the abdomen. Although her pancreatitis is still causing intense pain, this celiac plexus block dulls the pain signals to a more manageable level.
During this interview we talk extensively about small fiber neuropathy, a condition that arises after continued damage to nerve endings. SFN can cause a wide variety of symptoms including extreme sensitivity to touch, burning sensations, temperature dysregulation, gastrointestinal issues and even paralysis. Jo talks us through her diagnostic process for SFN, a skin punch biopsy where doctors looked at her small nerve fibers under a microscope. Jo’s SFN is believed to be caused by her Sjogren’s syndrome, although she has a few diseases which may be causing this comorbidity.
Jo is the kind of person who likes to be in control of her life, and found it emotionally devastating when chronic illness took some of that away. Sometimes the way she was treated by medical professionals was even worse than her physical pain, adding another layer of challenge to an overwhelming situation. Still, Jo has learned invaluable lessons from her medical journey. She realized she needed to stop living in the past and worry less about the future, leaving her to find things to be grateful for in the present moment. In 2019 she was featured on ‘Chasing the Cure’ with Ann Curry, allowing her to educate a wide television audience on her unique story.
During this interview we discuss the low histamine diet. Find the histamine master list here: https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
We also discuss an article on small fiber neuropathy which can be found here: https://www.foundationforpn.org/small-fiber-neuropathy-causes-it-all/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/
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