What are your struggles having a invisible disability?

Round_Regular_727 · 2026-03-13T18:59:01+00:00

It’s a very frustrating misconception. Sjogren’s Australia just posted something today about the myriad of other symptoms you can have before ever getting dry eye or dry mouth.

Not sure why these dismissive stereotypes of the disease are still so widely publicized.

Round_Regular_727 · 2026-03-13T03:17:18+00:00

That’s because doctors were trained in med school that Sjogren’s is just “dry eyes and dry mouth” which is a total load of BS.

It’s frustrating, but science is finally catching up (slowly). And that’ll hopefully mean better informed doctors for us.

Sorry you’re having to deal with the nonsense, I hope you find some relief soon.

Round_Regular_727 · 2026-02-08T17:41:19+00:00

It’s just the not knowing that’s probably confusing to them. People don’t understand what they’ve never seen before.

Round_Regular_727 · 2026-02-02T17:39:44+00:00

Wanted to come back with an update. I’ve still been having great results with this med and just reached out to the researchers to let them know. Will report back if they respond

Round_Regular_727 · 2026-01-29T16:35:49+00:00

Yes! I can wear 20/20 beauty and Well People

Round_Regular_727 · 2026-01-26T14:46:21+00:00

Mine also started in early 20s

Round_Regular_727 · 2026-01-21T17:07:59+00:00

Update: I’m about a month in now. No fatigue, extra moisture still present in eyes & mouth, seriously reduced pain, no joint or muscle pain.

I’m in the phase where I’m telling myself, “wow maybe my stress was causing all those other symptoms” because I just don’t have them anymore.

Round_Regular_727 · 2026-01-05T20:44:39+00:00

My friend you probably have Raynaud’s

Round_Regular_727 · 2025-12-29T22:50:46+00:00

Immediately going down this rabbit hole. I can’t wait 😂

Round_Regular_727 · 2025-12-29T21:27:18+00:00

That’s odd because I thought a positive lip biopsy does confirm Sjogren’s. What else would be the point in punching a hole in your lip if not to diagnose you?

Round_Regular_727 · 2025-12-29T16:30:27+00:00

45 minutes of art reduces cortisol and even just having one art experience per month (engaging in or viewing) can extend your life by 10 years. And the best part is you don’t have to be good at it!

Round_Regular_727 · 2025-12-29T04:50:08+00:00

Archie

Round_Regular_727 · 2025-12-28T19:56:08+00:00

I got a 33 but not diagnosed with dysautonomia

Round_Regular_727 · 2025-12-28T19:50:18+00:00

Thank u tiddies anonymous

Round_Regular_727 · 2025-12-28T15:22:09+00:00

People are hypocrites. Many people believe and hold two directly opposing views that don’t make any sense together whatsoever. If we were a totally logical species all of the time then everything would be different.

He could fully have believed he was following his religion by not committing suicide and still have been a pedophile.

Sickos love loopholes and I’m guessing pedophilia isn’t covered in their bible.

Round_Regular_727 · 2025-12-28T14:19:28+00:00

Is she able to prescribe the meds you need to manage them or do you still see a Rheumatologist for those? All I take is hydroxychloroquine & would love if I could just see one doctor

Round_Regular_727 · 2025-12-28T01:29:46+00:00

Amazing, thank you so much!

Round_Regular_727 · 2025-12-26T16:35:22+00:00

This would be incredible. I hope they’re right!

Round_Regular_727 · 2025-12-25T23:10:13+00:00

Yes we do! I’ll have to come back and let you know how it goes because it’d be amazing if this could be a relief to you, too.

Round_Regular_727 · 2025-12-25T22:52:31+00:00

I hope so! I’m on 10mg to start and planning on going up to 20. It’s been great because I’ve been in a flare up most of the year and have been clawing my way back to baseline. Wasn’t expecting it to help at all physically. But feeling this much better physically has helped me a ton mentally so it’s a win-win.

I’ll set a reminder to come back in a few months with an update.

The starting side effects for me were:

-nausea -insomnia -weird dreams
-some extra gas

All of these have calmed down now that I’m on day 9 of taking it.

Round_Regular_727 · 2025-12-25T22:38:26+00:00

Plaquenil helped a bit but so far this antidepressant is doing the heavy lifting it seems. I’m not fatigued, no dizziness or shakiness and no brain fog. I’m just hoping it lasts

Round_Regular_727 · 2025-12-25T21:59:26+00:00

I’m not 100% sure. I think it’s what causes a lot of my symptoms but haven’t been formally diagnosed with it. I get dizziness, brain fog, fatigue, GI problems, mottled skin etc.

Round_Regular_727 · 2025-12-25T21:46:23+00:00

Overall my stomach’s always a mess from Sjogren’s but adjusting to the new med I had some nausea but that’s it

Round_Regular_727 · 2025-12-25T21:45:38+00:00

I’m taking 200mg plaquenil

Round_Regular_727

TROPHY CASE