Chronic Illness Memes (Tell Me You’re Chronically Ill Without Telling Me You’re Chronically Ill)
"You need 5 minutes to mentally prepare yourself just to sit up, when you need to use the toilet at night." - Pesky #ChronicPain problems.... Can you relate to any of these #memes ?: buff.ly/2rh0x4p
#NEisVoid #spoonie #ChronicIllness #disability #awareness #ChronicLife #arthritis #Lupus #sjogrens
For those who didn't watch it, the gist was: Q. "If someone has an #MECFS diagnosis due to severe fatigue and turns out to get diagnosed with #Sjogrens, do they have both?" A. "No, if you have Sjogren's + severe fatigue from it, the fatigue is from Sjogren's and you don't have ME."
Most of the 6-mo. list I see at least twice a year.
Some I've seen significantly more often.
Those with a * are not doctors, but still are part of my health care team.
And I'm reasonably certain I'm overlooking two or three.
#Sjogrens #ChronicIllness #Spoonies #ChronicallyIll
An antifungal is recommended for symptomatic treatment of oral / systemic candidiasi in #Sjogrens.
Nystatin or Fluconazole 50gr every 3 or 4 months or when it flares is innocuous and v effective
See
sjogrensuk.org/wp-content/u...
www.medicines.org.uk/emc/files/pi...
bnf.nice.org.uk/drugs/nystat...
Well well... that must be for the astronauts.
Meanwhile for over 60 mortals on Earth with autoimmune diseases like #sjogrens or #lupus susceptible to yeasts infections on skin, nails, mucosa (blisters, abscesses, even sepsis) NHS GPs can now withdraw antifungals from their repeated prescriptions
My Recovery Time for Simultaneous Bilateral Patellar Tendon Rupture — What happens when you have Lupus, and are on long-term steroid therapy.
"To me, it was just part of a regular #Lupus or #Sjogrens #PainFlare. That is a huge problem with chronic, #autoimmune disorders..You often get so used to living with pain that you sometimes don’t notice when a pain is ‘not normal’ anymore.": buff.ly/Tpp5EEN
#ChronicPain #MondayBlogs #disability
I wonder if this might also work for #Sjogrens patients?
'The more useful question isn’t “why can’t I stick to a system?” It’s “why are the available systems so poorly suited to how I actually live?”'
Well worth reading for us #spoonies.
#ChronicIllness #autoimmune #Sjogrens
There is a strong link between poor sleep and lupus. If you have an autoimmune disease like #SLE, #lupus, or #Sjogrens, getting enough good-quality sleep is really important. Learn more here: www.youtube.com/watch?v=4uP0...
Thanks to KALEIDOSCOPE FIGHTING LUPUS
And here is the study quoted by the current UK clinical recommendations for the management of #sjogrens:
Chang C-C, Chang Y-S, Wang S-H et al. Primary Sjogren's syndrome and the risk of acute pancreatitis: a nationwide cohort study. BMJ Open 2017;7:e01480
bmjopen.bmj.com/content/7/8/...
😡 Almost all the labs we rely on to diagnose and follow disease activity in #SLE, #lupus, #Sjogrens are over 55 years old!
www.youtube.com/watch?v=JWit...
This leads to delayed diagnoses, mistakes in diagnosis, and mistakes in properly identifying disease activity and response to medications.
Finally, a page from StatPearls about autoimmune #pancreatitis and two more recent studies about #sjogrens and the gut microbiome
pubmed.ncbi.nlm.nih.gov/32809604/
I'm going to post here references to old studies about pancreatic exocrine insufficiency in #sjogrens
It seems in recent years doctors tend to dismiss the problem as generic irritable bowel syndrome?
Why? Shouldn't it require more prevention, monitoring, symptomatic treatment?
🧵
Living with #Sjogrens, I mourn having a reliable voice.
I used to sing constantly—weddings, choirs, musicals, around the house, in the car. Now it's pitchy and often physically painful.
My speaking voice used to boom and resonate whenever I wished. Now it mostly rasps and creaks.
#autoimmune
Most people know Sjögren's as the "dry mouth and dry eyes" disease. But for many patients, the story goes much deeper than that. This week's story in honor of #AutoimmuneAwarenessMonth explains: https://ow.ly/tviQ50YvXK2
#Sjogrens #SmartPatients
" #Sjogrens dried the elixir from her soul. #Fibromyalgia blunted colors, dimmed laughter..some days, the weight of being unwell so young pressed so cruelly that she..wondered if absence was easier than #endurance.": buff.ly/fmoXul5
via kevinmd
#ChronicIllness #ChronicPain #NEisVoid #disability
6) Gov could also do and publish consultation about welfare reform with civil servants who receive PIP because disabled or diagnosed with a long term conditions (celiac, #sjogrens, other #autoimmunedisease, etc) on top of their salaries.
Compare ideas of fairness and inequalities with real data!
Chart with the results of a clinical trial published in 2025 which shows an increased risk of new onset autoimmune diseases: 11 conditions compared to non-exposed group: Behçet's disease, spondyloarthritis, systemic sclerosis, systemic lupus erythematosus, polymyalgia rheumatica, psoriasis, rheumatoid arthritis, Sjögren's syndrome, type 1 diabetes (in adults), vasculitis, and inflammatory bowel disease following a Covid-19 infection. https://www.sciencedirect.com/science/article/pii/S0049017225001763
After a Long Covid diagnosis & 3 years of complaining about worsening fatigue, joint pain and itchy skin (& 2 rheumatologists who ignored my symptoms)...
The 3rd rheumatologist finally ran the right tests:
Anti-Fodrin Ab IgG, IgA
that were positive for Sjogren's Syndrome.
#LongCovid #Sjogrens
👇👇
I'm lucky enough to have pretty good doctors, but #Sjogrens affects so many systems it takes a fleet of specialists — and updating them all on what the others are doing can be exhausting.
As if the #autoimmune disorder itself weren't exhausting enough.
My wife battles Sjögren’s disease every day, and now she’s helping fight it by captaining a fundraising team. I’m supporting her and the Sjögren’s Foundation in raising awareness and funding research.
Donate here:
walkforsjogrens.org/participants...
#Sjogrens #AutoimmuneAwareness #SupportResearch
Y'day I met a Maltipoo! Perhaps I may have a dog again, who knows! The loss of my last one (that lived 15 years) in 2021 was so painful, coinciding thyroid eye disease onset on top of #sjogrens, that I couldn't think about it...
www.dogstrust.org.uk/dog-advice/g...
www.rspca.org.uk/findapet
Cover of The Sicca Messenger Teasers paperback edition https://www.amazon.co.uk/dp/1919405909/
A little book full of ideas and snapshots on my independent research project on #sjogrens and other #autoimmunedisease - and with plenty of space to make notes in the margins too.
#BookSky
www.amazon.co.uk/dp/1919405909/
Going to the doctor is a waste of money. I know my body better than any "professional" does and none of them give a shit if I feel better or not so long as they get paid.
I need to find a good TCM practitioner. To hell with western medicine. I'm cranky this morning and I feel yucky.
#sjogrens
Me:
I remember stretches of time as a kid when I'd only eat cornmeal mush or Cream of Wheat
Sister:
Hm. Food fixations. Autistic trait.
Me:
Very likely. Alternative explanation: I had sore throats all the time (early Sjogren's symptoms?) and I knew those would go down easy
#Sjogrens #Autism
The doctor told me three weeks ago that my recovery time should be about a week.
To be fair, she didn't specify which week.
#chronicillness #spoonies #Sjogrens
When Chronic Pain Isn't 'normal Anymore But You Don't Realise... a chronic voice .com
"I thought it was just my #Sjogrens acting up again, because my #knees hurt almost every day anyway, and paid not much mind to it. I went out with a friend in the evening & even went for a walk up & downhill despite the pains.": buff.ly/W5wuN76
#ChronicPain #MondayBlogs #disability #lupus
If you have #Sjogrens, come join us at the 2026 yearly Sjogrens Foundation National Patient Conference. Register at Sjogrens.org/get-involved/national-patient-conference
Do you have #Sjogrens? Come join us at our yearly virtual National Patient Conference, where you will learn a ton about Sjogren's, what it is, how it is treated, and go away with a ton of practical advice you can put to use immediately in your own life:
sjogrens.org/get-involved...
With all the warm weather and rain, the humidity in the house is ~50%, even without running any humidifiers, after months of 15-25%.
For the first time in ages, I'm feeling almost normal: eyes not burning, lips less chapped, clear sinuses, mouth not achingly dry.
#Sjogrens #autoimmune #spoonies
If would be a great idea to have a list with names of clinics / hospitals in any Region that offer integrated care for #sjogrens both NHS and private and let the patient choose
