I'd rather not shine a spotlight on anyone unasked, but as I have a family member with #SjogrensDisease I was heartened when I saw that it was a tag here. I will pass that news on to my family member, who is not on Mastodon. Sometimes one doesn't need to talk about it; sometimes one just needs a reminder than one is #notalone . #Sjogrens

@AncTreat5358 saying hello from Ireland and following - first other #SjD I've met here yet. Can we find others amd form a #Sjogrens gang?

@AncTreat5358 Trying very hard not to be the annoying reply gal here since #Sjogrens is what I have too. I tried eliminating caffeine entirely for a while, but then determined I can have a little. Two a day tops. Black tea is the easiest on my stomach, although I also have one cup of coffee (dark roast - less acidic than lighter ones) if I'm feeling ok. Citrus herbal teas are pretty much out due to the acid, as are sodas. Some Sjogies determine they have better energy levels if they avoid all caffeine, but everyone's different.
If you've having reflux issues and are also taking ibuprofen for joint pain, try replacing the ibuprofen with something else. I took it for decades without any problems, but since developing SjD I can't tolerate it anymore. Ibuprofen is well-known for causing stomach problems in some people, but my doctors missed it.

@AncTreat5358 I'm glad you got diagnosed - #Sjogrens is usually tricky, to say the least, and not because it's rare (it isn't). I recommend you join the Sjogrens forum on SmartPatients.com and check out SjogrensAdvocate.com, if you haven't already. Unfortunately, it's very common for even rheumatologists not to know much about it, so you'll have to look out for yourself. There's just... a _lot_ to know, and they're behind after decades of not taking it seriously. I hope things turn around for you and you can get some more helpful treatment now that you know what you have 🤗

Yesterday was my first World Sjogren's Day since getting diagnosed. It has been over 8 years since I went to my doctor about postpartum symptoms that wouldn't go away and they asked "Have you tried looking it up online?" I was very much on my own until my doctor left the practice and I got assigned a nurse practitioner who took me seriously. Most of my symptoms were related to histamine responses to scented products. To get into see an environmental allergy specialist, I had to be screened for autoimmune diseases. It took about two years from the blood tests to the biopsy that confirmed Sjogren's. Now I am being monitored for systemic involvement and other autoimmune diseases. I eventually got into the environmental allergies clinic and got diagnosed with Multiple Chemical Sensitivity. More diagnostic adventures await as we figure out what's going on with my mast cells. The good thing is that while there's no cure for Sjogren's or MCS, I am doing all of the things I can (My doctor says I am the perfect patient who goes above and beyond!). The main guidance - "Don't get sick!" so I mask up around others. Ironically, Sjogren's prescribes low impact exercise and MCS high impact so training 80-20 for ultra marathons is a perfect fit. Running is my medicine!


#Sjogrens #SjogrensDisease #Running #AutoimmuneDiseases #MultipleChemicalSensitivity #UltraTrail #GetOutside #Zone2Running #MaskUp #CovidIsNotOver #ScentFree

Rheumatologist says "Don't get sick!"

I'm trying Doc! Would love a little help from my friends!

Where's your mask at?

#MaskUp #AutoimmuneDiseases #Sjogrens #SaltingTheVibes #WheresYourMaskAt #FuckMaskBans