Thread by @SarahSchaferMD

"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/

https://twitter.com/DrChadJohr/status/1542546664732467200

Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
2/

My 2021 informal survey of 100 patients asked their biggest challenge living w #Sjogren's. The top answer was not symptoms, but the failure of doctors to treat it as a serious systemic disease. Patients often had to seek specialty referrals on their own. 3/

Patients said things like "I don't want to be my own doctor, but I know more than my rheumatologist about Sjogren's", "no one is in charge", or "my rheumatologist tells me Sjogren's is just a sicca disease". 4/

Patients who did mention symptoms:
#1 Fatigue and brain fog (often together)
#2 Sensory and autonomic neuropathy
#3 GI (various)
#4 Eye or Oral sicca
#5 Joint pain/ swelling

Fatigue is the most disabling part for most. 5/

#sjogrens #RheumTwitter
Neuro-Sjogren's is common but frequently overlooked. Many patients are not monitored for systemic features. Almost every Sjogren's patient has systemic involvement- if you look for it.
Sjogren's is a serious systemic disease, never just sicca. 6/

Only a few medical schools offer a Sjogren's lecture even though it impacts ~1%. Most PCPs I have taught were told it is an unimportant dryness disease. Widespread education w 21st-century info is imperative.
Change needs to start with rheumatologists. #RheumTwitter #Sjogrens 7/

I want to thank @ChadJohr for shining a spotlight on Sjogren's. Many of us are deeply grateful. 8/8