Having someone like @keithmuise.bsky.social advocating for us feels so damn special. Thank you so much, Keith.

#mecfswarrior #autonomicneuropathy #spoonie #LongCovid #Dysautonomia #mecfs #chronicillness #invisibledisability #invisibleillness #CovidIsReal

First dose is done! ✅

2nd dose Rituximab in two weeks & then I’m set for 6 months.

#mecfswarrior #interstitiallundisease #autonomicneuropathy #spoonie #youdontlooksick #myalgicencephalomyelitis #Dysautonomia #youareenough #mecfs #chronicillness #invisibledisability #invisibleillness #sjogrens

#mecfswarrior #interstitiallundisease #autonomicneuropathy #spoonie #youdontlooksick #myalgicencephalomyelitis #Dysautonomia #youareenough #mecfs #chronicillness #invisibledisability #invisibleillness #sjogrens

I’m having a rough day. #orthostaticintolerance #POTS #sjogrens #autonomicneuropathy

Wow, liquid Amitriptyline is weird - Feels like my tongue + back roof of my mouth have had a small local. 😂

(On the plus side: No more tablet getting stuck & burning my throat until I bleed - Up to 3 times a day.) #AutonomicNeuropathy #ItsTheLittleThingsThatStick

Just thought I’d put this out there
Does anyone know of treatments for POTS and Autonomic Neuropathy?

They’re making a mess of my ENS literally & figuratively

Compression, Corlanor & 25 assorted 💊 just aren’t cutting it and I have work to do

#AutonomicNeuropathy
#EntericNervousSystem
#POTS
#QSART

#mecfswarrior #interstitiallundisease #autonomicneuropathy #spoonie #youdontlooksick #myalgicencephalomyelitis #Dysautonomia #youareenough #mecfs #chronicillness #invisibledisability #invisibleillness #sjogrens

A protein that disrupts cells’ energy centers may be a culprit in chronic fatigue syndrome New study offers clues as to how exhaustion could arise in people with ME/CFS—and potentially related conditions such as Long Covid

Please let this be food progress towards treatments and/or cure. 🤞🤞🤞

#mecfswarrior #interstitiallundisease #autonomicneuropathy #spoonie #Dysautonomia #mecfs #chronicillness #invisibledisability #invisibleillness #sjogrens

www.science.org/content/arti...

#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. ....