Thanks
@ahimsa and your experience seems to match what others have told me so far which is that they felt SOB from dysautonomia yet they could pass a spirometry test. Whereas I horrifically failed three spirometry tests since Sept and could only inhale/exhale at 69-70% of normal while at rest.
I was supposed to exhale 6 seconds minimum but ideally ten secs, but two days ago I did 1.2, 1.6, and finally 2.0 secs but with a level of effort that I thought I was going to die and was severely ill that night and had to call doctor who was ready to send me to the ER for oxygen (but I did not go.)
It is disheartening to me b/c I really believed that I could pass the test and do the lung diffusion test that my ME/CFS doc, my MCAS doc, and my mold doc all wanted me to do. I gave it everything in me but could not do the first parts of test so respiratory tech called off the diffusion test b/c she saw I was too impaired (even though she saw my persistence and determination.)
If I am 70% of normal breathing at rest, I do not know what I am with exertion but my printout from hospital in May (the second time I attempted test and failed) said I have a restrictive airway disease and I am pretty sure my MCAS doc is going to give me the same diagnosis.
The problem is that I do not know why I have it and if it is b/c my muscles are just so weakened from ME/CFS, or if it is from breathing in toxic mold for 2+ yrs or ten yrs of breathing in multiple toxins at work or really bad mast cell stuff in lungs or all of the above or none of the above.
I feel like an outlier on this board yet I have IgM viral reactivation of EBV, HSV 1&2, VZV, and two enteroviruses (echo and coxsackie) and first anti viral did nothing and second I could not tolerate even at micro dose.
I also get severe autonomic issues with tachy and low BP and OI and now the immune system chaos with severe MCAS that led to hospital and MCS where I cannot live in apt that most people could probably tolerate but my brain is so hypersensitive that I am limited by everything.
But the worst issue that has declined rapidly for two yrs is my breathing and it makes me wonder about my ME diagnosis if most PWC's can pass spirometry tests (although I match with ME in so many ways and my ME doc is convinced I have it.)
But why don't other PWC's fail spirometry tests? It seems like many can walk and get delayed PEM but I cannot walk at all. My legs can walk fine but my breathing cannot sustain more than a few footsteps.
I am starting to lose hope and I have a wonderful support system in person and a group of friends from PR and God who sustains me but the breathing limitations are becoming too much to cope with and I wanted to post about it on the public board in case anyone has any ideas that I have missed.
Thanks to anyone still reading!