this is my personal experience.
i was aware of the effects, (but not the name), from about 14 or 15.
i was progressivelly getting more severe effects until i was diagnosed at 46.
when first diagnosed, i became slightly sicker, as i started new drugs, and the desease had not yet subsided.
some of the milder drugs had good effect on me for a few months, but my body adapted to them, and my desease returned.
eg. depression meds, lyrica, otc pain medications.
once i was stabalised with my meds, my blood counts returned to near normal.
and i had a little time of almost remmission.
this remission lasted about 2 years.
i now am watching a few changes starting to occur, time to speak to my doctor about adjusting my meds again.
when i was first diagnosed, i had damage to my liver, kidneys, lungs, bladder, heart.
today i still use blood thinning medication, but have no problems with my other organs.
so for me the pain is still there, i have no energy, and cannot physically do any strenuous work.
my overall health is better than when diagnosed, but my fatigue is worse.
i live a stress free lifestyle.
if i stress about even little things, my health deminishes very quickly.
i could not live your current lifestyle. the stress of your journey and struggles would be too much for me.
(i do read your blog, and your threads.)