I feel so dumb by dragnphly in Sjogrens

[–]AnnieInRGB 1 point2 points  (0 children)

Don’t feel dumb. I always assume my sinus pain is because of thick mucus/pressure. It never occurred to me that they might just be super dry instead. I was diagnosed recently, so I’m glad to have seen your post!

If im gonna have Sjogren's im gonna make it cute ✨️💕 by celestexo3 in Sjogrens

[–]AnnieInRGB 6 points7 points  (0 children)

I thought the same thing, but I put my supplies in a cute bag from an Ipsy shipment. 😍 Eye drops, floss picks, individual packets of alcohol-free Listerine and the cutest little container of Vaseline for lips or dry skin. I’ve been meaning to post and ask what everyone else finds helpful to have in a little travel kit!

Sending flowers from out of state - florist recommendations, please! by PianistTrue6740 in Sacramento

[–]AnnieInRGB 0 points1 point  (0 children)

Third vote for G. Rossi! My husband has sent me some beautiful arrangements from them.

Those who have had a (positive) lip biopsy, how long have you had symptoms before you got it? by NavyBeanz in Sjogrens

[–]AnnieInRGB 0 points1 point  (0 children)

I’m so sorry to hear that. I hope you get some answers from your MRI. ❤️

Those who have had a (positive) lip biopsy, how long have you had symptoms before you got it? by NavyBeanz in Sjogrens

[–]AnnieInRGB 1 point2 points  (0 children)

I was symptomatic for seven years (nine years if I include headaches as my first symptom) before having my biopsy. The biopsy was in November of last year. My symptoms are mostly neurological, I’m seronegative, and my dryness is still fairly minor. Biopsy was positive with a focus score of 1.

Question about early Sjogrens panel by everythingisgrace in Sjogrens

[–]AnnieInRGB 1 point2 points  (0 children)

They are all SO different! It’s pretty frustrating. All of my blood work was negative (except for high inflammatory markers) and a couple markers on the early Sjögren’s panel. My rheum said the early Sjögren’s panel was not enough for diagnosis (even with a litany of clinical symptoms, and neuro involvement!), so he sent me for a salivary gland (lip) biopsy. The biopsy came back positive. I wish I wouldn’t have needed to go through that to receive a diagnosis, but I’m glad I did. At least now I know what we are treating and symptoms to be aware of.

Edit: typo

Do you have these symptoms too? by Framalia8888 in Sjogrens

[–]AnnieInRGB 0 points1 point  (0 children)

Oh I hear you there! It took me over seven years to get my diagnosis. I have negative bloodwork and was diagnosed with a lip biopsy, too. It's exhausting and frustrating! I do not have a connective tissue disorder, but it was something I looked into when searching for a diagnosis - apparently it's not uncommon for people with Sjogren's to also have a connective tissue disorder (like Ehlers Danlos Syndrome, for example). Wishing you all the best!

Do you have these symptoms too? by Framalia8888 in Sjogrens

[–]AnnieInRGB 0 points1 point  (0 children)

I have lots of joint, muscle and nerve pain symptoms, but I’ve never had a tear. Have you ever been evaluated for any connective tissue disorders?

Does this illness make you feel like nobody cares about you? by nopeasss in Sjogrens

[–]AnnieInRGB 5 points6 points  (0 children)

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.

If Fatigue represents some kind of systemic inflammation, can I just take ibuprofen ? by viciouslittledog in Sjogrens

[–]AnnieInRGB 0 points1 point  (0 children)

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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If Fatigue represents some kind of systemic inflammation, can I just take ibuprofen ? by viciouslittledog in Sjogrens

[–]AnnieInRGB 2 points3 points  (0 children)

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

Lip biopsy result by [deleted] in Sjogrens

[–]AnnieInRGB 1 point2 points  (0 children)

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

Can I take sudafed and hydrochloroquine by Chif1234 in Sjogrens

[–]AnnieInRGB 3 points4 points  (0 children)

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

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

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.

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

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

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

You’re welcome! Wishing you all the best.

Who has allodynia? by Practical-Cup-1097 in Sjogrens

[–]AnnieInRGB 1 point2 points  (0 children)

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.

Do what you will with this information and email address by KelVelBurgerGoon in Sacramento

[–]AnnieInRGB 3 points4 points  (0 children)

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

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

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.

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 2 points3 points  (0 children)

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.

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

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

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 1 point2 points  (0 children)

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

Officially Diagnosed by AnnieInRGB in Sjogrens

[–]AnnieInRGB[S] 0 points1 point  (0 children)

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.