r/sarcoidosis

Hi all! I’m a 27F and had just about given up on ever trying to identify what was wrong with me until my current flare started with some new symptoms and I started realizing maybe my random skin and eye issues weren’t just “weird allergies.”

I had no idea the constant eye flare-ups I was getting several times a year could be autoimmune, esp. sarcoidosis, related. One or both of my eyes will turn red and painful, and usually light-sensitive. I also thought I just had sensitive skin, and that’s why I got weird rashes that would take weeks to months to go away. I had extremely painful erythromelalgia that flared in the nerves of my hands in feet that I assumed was a reaction to medication or something.

I thought my autoimmune issues were limited to neuro and joints—Ive had flares of unexplained arthritis in my knee, both shoulders, and ankles since 2018, and then in the last couple years, had SSNHL, dysphagia, balance/vertigo issues, PVC’s, and a bunch of non-specific white matter lesions.

I was ANA/RF/HLA-B27 negative, and we chalked it up to undifferentiated connective tissue disease and started cimzia.

My latest flare started with air hunger, and I thought this was anxiety or exercise-induced asthma. But it kept getting worse, and then we found a lesion in my eye called PAMM. My calcitriol was also high, but I shrugged that off as that I must have been unknowingly taking something that supplemented my VitD. I now know that’s not true, bc the supplementation-supplied VitD2 level was near 0.

I went to make sure I didn’t have a blood clot or urgent heart issue, and my chest xray was clear. But here I am, still wondering if this is all in my head and I’m just reaching to make connections that aren’t there. Maybe the scar was just healing slowly, and maybe the rashes were just eczema, and maybe the lesions were just from migraines, ya know?