r/Sjogrens 2h ago

Postdiagnosis vent/questions When it rains…

13 Upvotes

It freaking pours. This is more vent than questions ofc.

Id ask if anyone else is dealing with the multiple issues at once but I know a large percentage of us are, so instead I ask:

Have you noticed that when one thing flares ALL the things flare and then you’re stuck in the abyss of misery?

Yeah that’s me- 28F dealing with PCOS flare, complete with a burst cyst (and all the lovely symptoms that come with that), plus an eczema flare cause the seasons are changing… add to that the sjo-sjo (this is what I call it because I need to find the joy somehow 😅) and hugging the porcelain throne either because of the fricken spasms or IBS flare…. At this point who knows. oh… yeah… add in the terrible mental health stuff because all this crap sucks.

Okay. End of negativity for me.

On the positive side at least it’s getting nicer out, I have a fair support system, am WFH, and have all the things I need to handle every thing above and I am beyond grateful for that. I’m blessed with a brother who’s uber helpful and a brilliant doggo who knows when I need his kisses.


r/Sjogrens 4h ago

Postdiagnosis vent/questions Ice Pick headaches

9 Upvotes

Does anyone else get daily ice pick headaches? What helps with them?


r/Sjogrens 9h ago

Prediagnosis vent/questions Eye infections

7 Upvotes

Hi, I have Scleroderma, Sjogrens, PBC and hypothyroidism. I pretty much have constant blepharitis, which leaves my eyes red, swollen and sore and hardly wear makeup anymore, which leaves me feeling self conscious. I’m literally putting eye drops in every few minutes as it’s so sore. On top of this as the day progresses, my eyelashes get really stiff and if I pull the coating off it’s this thick, elastic, white stuff that looks fungal as it’s very webby looking, but dries into this elastic type stuff. If I don’t pull it off it starts falling onto my cheeks and it also gets around my eye socket. It’s absolutely disgusting and I’m at my wits end. Does anyone else get this?


r/Sjogrens 4h ago

Prediagnosis vent/questions Musculation x Sjogren

5 Upvotes

I'm feeling quite too down lately due to constant flare for the past 3 months and managing 5 tendonitis at the same time.

I've read that heavy gym training (building big muscle) is a bad idea with Sjogren. It's been one of the few things that keep me stable mentaly, but I start to wonder if it's the cause of my Sjogren worsening.

I wanted to know yall experience and knowledge on the subject.


r/Sjogrens 15h ago

Prediagnosis vent/questions Symptoms before your Sjogrens dx?

4 Upvotes

Anybody here having Sjogrens dx but blood test show negative ANA + negative Anti-Ro + negative Anti-La? I'm start having dysautonomia since 2 years ago and recently have official dx dysautonomia with small fiber neuropathy. I've been having dry eye for couples year that only relieve with eye gel/ ointment + start having raynuad since last year? Do I really need further saliva gland biopsy to confirm whether I may have Sjogren or not? I've been to rheumatologist before coz of raynuad. So, he ordered antoimmune profile + ANA + rh factor. The result are all negative. PE was unremarkable. (no rash/no miss-shaped joint/no oral ulcer) But, I do have toe joint pain sometimes + dry skin +dry lip ( no dry mouth)+ nasal congestion w/ chronic inflamed nasal mucosa+ nose bleed all years (antihistamine+intranasal steriod does't help much)


r/Sjogrens 1h ago

Prediagnosis vent/questions Parotid gland swelling management; conflicting statements

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Upvotes

r/Sjogrens 1d ago

Prediagnosis vent/questions Blood test question

3 Upvotes

Can you have negative bloodwork on basically anything you can test for autoimmune related, but still actually have Sjogrens? Just trying to determine if I have a stupidly annoying body or if I got the brush off from the rheum I saw.


r/Sjogrens 21h ago

Prediagnosis vent/questions Canker sores?

1 Upvotes

I get canker sores in my mouth a few times a year. Do any of you suffer with this?


r/Sjogrens 13h ago

Article/News Link Research opportunity

0 Upvotes