Thread by @NeuroSjogrens

#Dysautonomia damages ur body's automatic pilot (AP) system that controls where blood goes, how food processes/moves, temperature & glucose regulation, BP, HR,sweating etc. W AP damage there is no homeostasis, no "static" issues. Problems shift & change & r unpredictable.

#Sjogrens commonly has #AutonomicNeuropathy. Most patients have lost the ability to predict how one feels day 2 day. Hr to hr. Even minute to minute sometimes. The days of predictable baseline function are gone for many #NeuroSjogrens patients.

Loss of this baseline functionality in #NeuroSjogrens #dysautonomia erodes ability to follow thru w plans. Steals ability to work full time or at all. Wears on friends/family. Eventually many are left disabled, unemployable, poor, alone & sadly unrecognized by MD's 4 many yrs.

@Dysautonomia
@dysclinic
@SarahSchaferMD are great sources of vetted information. Online resources include Dysautonomia International & Sjogrens Advocate. Smart Patients has great moderated online Sjogrens patient support group for support & crowd sourcing. Please share!

@D_Bone @loscharlos I tagged you since undoubtedly many #LongCovid folk will recognize this description (for NeuroSjogrens dysautonomia) & it may help people to describe/understand what they experience & why it's so difficult. Many people work better w framework & understanding.