According to the National Library of Medicine, about 25 percent of patients with an autoimmune disease will develop additional autoimmune diseases. That is definitely true of this week’s podcast guest, Vicky. Her first diagnosis of autoimmune rheumatoid arthritis came during high school, and she was diagnosed with Sjogren’s syndrome a few years later. This condition causes the moisture-secreting glands and mucous membranes to be drier than normal, resulting in dry eyes and mouth.
Vicky has also been diagnosed with interstitial cystitis, Raynaud’s phenomenon and gastroparesis, all of which are suspected to be autoimmune related. Interstitial cystitis affects the bladder and can cause urinary retention or hyperactivity, pain or ulcers. Vicky says it feels like having a UTI all the time. Raynaud’s phenomenon causes fingers and toes to feel numb and change color. Gastroparesis is characterized by slowing or even halting of the muscles in your stomach. It can be a comorbidity in many conditions including diabetes, Parkinson’s, EDS and MS, occur idiopathically, or in Vicky’s case be autoimmune in nature.
Naturally, having this many conditions coexist in one person can feel extremely overwhelming. After her fourth diagnosis, Vicky didn’t want to deal with any of this anymore. She was sick of going to doctors, sick of getting bad news about her health, and aching to forget that these health challenges existed. But ignoring chronic illness never makes it go away, and over time Vicky made huge progress learning to manage these diseases. She is now in a relatively stable place thanks to her current treatment regiment.
In this episode of the Major Pain podcast, Vicky walks us through her many diagnoses and what she’s learned along the way. She shares firsthand experience of what these diseases feel like, as well as living through an unexpected bout of idiopathic intracranial hypertension. She also discusses what she’s learned about navigating the medical system and how to push through the many roadblocks chronic illness can present.
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast