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I had never heard about it 😳 I got progressively ill after a “upper respiratory infection” symptom like episode (i just felt I couldn’t breathe and tightness) in October 2021 and a lil bump on my tongue that popped but went away without ulcerations it was like a inflammation on a few papillae. The nose swab was negative (even on multiple ERs) but I keep getting worse with palpitations and GI issues. I couldn’t go back to work. I had been running like a chicken without a head cuz I’m thinking it’s cancer (history of neuroendocrine cancer 2019). I did mention this to all my doctors and nobody seems to understand or correlate it to. I got tired and got (bought myself) a blood test 3 month ago (I should have gotten it sooner considering my pattern but no doctor or hospital did it), I had high antibodies for SARS and my last vaccine was the 2 booster by the time of the second booster… so now I ask everyone and seems like nobody knows if it’s just remaining vaccine antibodies or that I was exposed that October 2021 and I got everything from it. As at right now I have been diagnosed with Hypermobility Spectrum Disorder HSD (relative to hEDS/EDS) and Postura Orthostatic Tachycardia Syndrome POTS (there’s evidence linking POTS to long Covid patients). For now I just wanted to know what CIRS looks like to real people, to see any similar patterns in my case. I had to take my journey of finding accurate diagnosis on my own hands unfortunately because I would be labeled mentally in a way that is wrong and with probably bad intentions or lack of knowledge (just to give the benefit of the doubt). If it’s not to much and you feel comfortable what where your experience before and after your CIRS diagnosis?

Thank you so much in advance for any feedback 🙏🏻

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Replies to "I had never heard about it 😳 I got progressively ill after a “upper respiratory infection”..."

Wow… my heart goes out to U!! Mine is a longggg story, and I’m still desperately trying to find help. Was just in the hospital and NOT ONE NURSE OR DR. Knew one thing about it!!!
Before being diagnosed I had 6 years of a myriad of odd infections, severe explosive diarrhea that didn’t respond to any of tge many drugs prescribed ( couldn’t leave the house)., much mucus and constantly blowing my nose. I’m now experiencing issues with pain/numbness of legs… While. I in the hospital I had numerous MRIs… showed inordinate amount of white lesions on my brain… they ruled out MS … many CIRS pts have been erroneously diagnosed with MS. I hope I’ve answered some of ur questions I’d b More than Happy to speak with you anytime if u felt it could be beneficial. I’m Doctored out!!! U REALLY DO ALMOST HAVE TO BE UR OWN DIAGNOSTITION!!!!! Sad