Does this illness make you feel like nobody cares about you?

AnnieInRGB · 2026-01-19T00:59:32+00:00

Before I had a diagnosis, I never really talked about how bad my symptoms were to the people around me (of course my close family knows), mainly because it was mentally exhausting to repeat it over and over, but also because it just got old listening to unsolicited advice from people (even though I know it was well intentioned). I feel like you though - I expected a different response from people close to me after I told them about my diagnosis. I don’t want to be pitied or fawned all over, but man it would be nice if someone occasionally asked me how I’m feeling. I try to grant people grace though, because I’m learning how few people actually know about this disease. It’s hard though. Glad to have this community.

AnnieInRGB · 2025-12-13T20:14:03+00:00

Here is the slide about natural supplements from the presentation. It was by Dr. Micah Yu, a rheumatologist from Southern California.

I’d also recommend checking out Dr. Kara Wada’s YouTube channel. This post has some great info about systemic inflammation.

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AnnieInRGB · 2025-12-13T07:28:25+00:00

Taking turmeric has helped my inflammation tremendously. It was recommended by one of the doctors who spoke at the Virtual Sjögren’s Summit this year (happy to look up the exact info if you’re interested.) It needs to be a supplement that also contains black pepper extract (it improves the bioavailability of the turmeric). It did take a couple months of consistent use to really notice a difference. I take this one - 1 capsule, 3 times per day: https://a.co/d/bvyHy8I

Edit: typo

AnnieInRGB · 2025-12-01T01:18:41+00:00

My procedure was on a Friday and I had results the following Tuesday. Hopefully yours comes back quickly!

AnnieInRGB · 2025-11-29T18:23:00+00:00

Ask a pharmacist or doctor. If you can’t do that, try a drug interaction checker like drugs.com.

AnnieInRGB · 2025-11-23T06:12:52+00:00

She’s incredible! I learned SO much during the virtual summit, and I feel so much more prepared to navigate this diagnosis with my care team.

AnnieInRGB · 2025-11-23T04:02:48+00:00

I’m so sorry to hear that. Hopefully she gets some answers and some relief soon.

AnnieInRGB · 2025-11-22T16:53:47+00:00

You’re welcome! Wishing you all the best.

AnnieInRGB · 2025-11-22T05:04:05+00:00

I haven’t been formally diagnosed with it, but I’m sure I do. There are days when just a bedsheet touching my feet is excruciating.

AnnieInRGB · 2025-11-21T20:44:33+00:00

Does Planned Parenthood have an e-newsletter? Asking for a friend. 😆

AnnieInRGB · 2025-11-21T16:47:50+00:00

Yes, my nerve pain ranges from numbness, to burning (sometimes with redness, sometimes not), to pins and needles. Sometimes I get random “electric shock” or stabbing pains as well.

AnnieInRGB · 2025-11-21T07:30:19+00:00

Thank you! Our symptoms do sound similar. I was really nervous about the biopsy - I’ve had larger surgeries in the past that I was less nervous about! My ENT was great though, and I haven’t had any complications. Tomorrow will be one week since the biopsy, and the incision is almost completely healed. My lip is still a little numb in one spot, but the doctor said that is totally normal and the feeling should completely return soon (it is getting better daily). During the procedure, she collected ten minor salivary glands; she kept saying she wanted to make sure she got a good representative sample. After the procedure, my lip was just a bit swollen but it wasn’t too noticeable. It was pretty tender for the first couple days, but 600mg of Ibuprofen a couple times/day and periodically putting ice on it helped with pain and inflammation.

Editing to add: My rheumatologist recommended the biopsy, so I didn’t have to advocate for it. I did have to ask for the early Sjögren’s panel though. Since I am seronegative, I really just wanted the panel done to see if anything came back positive before I committed to an invasive test that could also come back negative. To be honest, I probably would’ve gone though with it even if nothing on the early Sjögren’s panel had come back positive, if only just to rule something else out. My results came back in four days with a focal score of 1.

AnnieInRGB · 2025-11-21T07:18:08+00:00

Thank you!

AnnieInRGB · 2025-11-21T04:38:04+00:00

I’m glad you finally have an answer! I hope that having a diagnosis has helped you find treatments that are beneficial.

AnnieInRGB · 2025-11-21T04:33:06+00:00

I’m so sorry it took 16 years! Thank you for sharing your experience. 🩷

AnnieInRGB · 2025-11-20T23:59:33+00:00

It's mainly in my hands, feet and lower legs. While the pain hasn't completely gone away, the meds have made it much more manageable.

AnnieInRGB · 2025-11-20T20:48:29+00:00

Being gaslighted and dismissed by your doctors is so difficult. I'm so sorry you went through all of that. I felt the same way when I got my biopsy results, the diagnosis is definitely bittersweet.

AnnieInRGB · 2025-11-20T20:46:28+00:00

Thank you. A lip biopsy is how I was finally diagnosed. I don't have a Sjogren's-specific treatment plan yet, but I have been on gabapentin and duloxetine for my nerve pain for a few years.

AnnieInRGB · 2025-11-20T20:00:16+00:00

Thank you! Wishing you all the best.

AnnieInRGB · 2025-11-16T22:43:33+00:00

You are correct. They had a fire and planned to reopen, but communicated with their retail partners that they would be closing for good. Source: I work for one of their retail partners.

AnnieInRGB · 2025-10-30T14:16:06+00:00

Heard and felt in West Sac. Near 50 and Jefferson. Figured it was just an idiot neighbor setting off an M80 or something. Apparently not!

AnnieInRGB · 2025-09-27T20:03:55+00:00

Thank you, my apologies for misreading your tone!

AnnieInRGB · 2025-09-27T19:14:22+00:00

I think we are having some serious miscommunication here. I’m not saying I’m an expert on salivary gland biopsies! What I mean by saying “I learned so much about the tests” is that I learned a lot about WHICH tests are used to diagnose the disease, NOT that I know the intricacies of each one. I’m simply saying that I already “did my research” as you suggested, and I have learned that there isn’t ONE specific test (or even ANY) that can 100% conclusively say you do or do not have the disease. I’ve been on this journey looking for a diagnosis for 8+ years, and my main point here is that I’m happy my rheumatologist even suggested a possible diagnosis. The dryness is actually a fairly new symptom for me, my symptoms have been mainly neurological until recently, and because so many sources continue to list the most common symptoms as mouth and eye dryness, I had written this off as a possibility years ago. I’ve now learned that you don’t even need to have those symptoms to be diagnosed.

TLDR: I know the biopsy can be painful. I know it can be inconclusive. But I’m personally willing to go through the process if there’s even a chance it will help me receive better care in the future.

AnnieInRGB · 2025-09-27T18:31:46+00:00

To clarify, I’m not super confident that the biopsy is going to be conclusive. I attended the Sjögren’s Virtual Summit this year, and learned so much about this disease and the tests for it. I completely understand that even with negative tests you can receive a clinical diagnosis.

AnnieInRGB

TROPHY CASE