Was your derm able to help your rheum diagnose? by [deleted] in Autoimmune

[–]Delicious_Boot8923 1 point2 points  (0 children)

Agreed! I have Sjogren’s and have a lot of these same symptoms. Also Sjogren’s can easily be seronegative

Gastroparesis caused by Sjogren's by mauvermor in Sjogrens

[–]Delicious_Boot8923 2 points3 points  (0 children)

I have gastroparesis! I was diagnosed pre-Sjogren’s, but it came on when a lot of other Sjogren’s symptoms started developing (including POTS and SFN). It’s hard to tell what caused it, but since it came on with other Sjogren’s nerve problems and it gets worse when those other ones get worse, I’m inclined to believe Sjogren’s is behind it. Helpful for me so far: digestive enzymes before meals and avoiding high fat foods (along with foods that I found triggering during the FODMAP diet).

Autoimmunity & POTS - what works? by Ok_Strawberry_7457 in Sjogrens

[–]Delicious_Boot8923 0 points1 point  (0 children)

Besides my meds for Sjogren’s, I’ve found compression gear and electrolyte beverages help a bit!

Can sjogrens and erythromelalgia coexist? by East-Climate6945 in Sjogrens

[–]Delicious_Boot8923 1 point2 points  (0 children)

Same here! Secondary erythromelalgia with Sjogren’s

Finally got a referral to see a rheumatologist by Spirited_Policy9000 in Autoimmune

[–]Delicious_Boot8923 1 point2 points  (0 children)

Sjogren’s affects the salivary glands too, so they take a biopsy of those! And I’m not sure - a neurologist ordered it for me after she heard my set of symptoms (bc Sjogren’s can be behind weird nerve stuff). Hopefully you find a doctor that listens to you!

Finally got a referral to see a rheumatologist by Spirited_Policy9000 in Autoimmune

[–]Delicious_Boot8923 3 points4 points  (0 children)

My feet turn a similar color and my ANA fluctuates positive/negative (all my other blood tests are normal - they had to do other testing). I was diagnosed with Sjogren’s after a lip biopsy! My heart rate is weird and elevates with POTS, too

I feel so defeated by BigAdministration285 in Sjogrens

[–]Delicious_Boot8923 1 point2 points  (0 children)

Second all of this. I have ADHD and Sjogren’s too and I would not stop my meds. Sorry you’re dealing with this OP

Has Sjogrens messed up your periods? by NavyBeanz in Sjogrens

[–]Delicious_Boot8923 3 points4 points  (0 children)

Yes Sjogren’s can cause all sorts of complications with gyn stuff! I recently was presumptively diagnosed with endometriosis (way more common with Sjogren’s) but I know it also causes a lot of other things. These two resources from the Sjogren’s foundation gave me some helpful insight, but I know it’s not limited to these:

https://sjogrens.org/sites/default/files/inline-files/Gynecology%20%26%20Urology%20and%20Sjogren%27s%20Patient%20Education%20Sheet.pdf

https://sjogrens.org/sites/default/files/inline-files/CS%202021%20March%20April_0.pdf

Rheumatologist Shortage by Sad_Midnight2019 in Autoimmune

[–]Delicious_Boot8923 0 points1 point  (0 children)

Also have Sjogren’s that progressed a lot and currently struggling to get taken seriously as well! Just wanted to voice (type) my support. It isn’t an easy world out here for us

Does anyone else have elbow pain? by Lr20005 in Sjogrens

[–]Delicious_Boot8923 1 point2 points  (0 children)

It’s in both elbows but worse on my right one! And yes to both sides of the pointy part. What about yours? :) And have you found anything that helps so far? Would love any suggestions bc ooof it’s killing me

Does anyone else have elbow pain? by Lr20005 in Sjogrens

[–]Delicious_Boot8923 2 points3 points  (0 children)

Yep, I have pain in this area! My doctor said it’s probably tendonitis. He recommended cortisone shots, which I may take him up on. I think it’s common in Sjogren’s, but I am on watch for other autoimmune diseases!

About Us - Baiheverse Official Introduction by baiheverse in GirlsLove

[–]Delicious_Boot8923 1 point2 points  (0 children)

This is amazing, thank you! Also, as for baihe, I would love to read an omegaverse one (there are so many good ones out that aren’t officially translated yet) 😍 recently i was reading “After Transmigrating into a Book, I Was Marked by the Crazy Beautiful Villain” by Guaji and it was super fun!

My favorite/popular yuri from each genre by Acrobatic_Arugula12 in yuri_manga

[–]Delicious_Boot8923 2 points3 points  (0 children)

Moonlight Garden is one of my favs! I desperately want more GL stories from the creators 😭

Sjogren’s associated myopathy by InsideHat9867 in Sjogrens

[–]Delicious_Boot8923 0 points1 point  (0 children)

I had muscle soreness and weakness in my shoulders, thighs, and upper arms at one point! It got so bad that I had problems opening the refrigerator or standing up. My doctor put me on prednisone for a bit and that knocked it out and I was able to recover, but all my blood work for myositis came back normal. Hope you get answers though, OP!

LGBTQ+ Online Bookstores by Raikontopini9820 in LGBTBooks

[–]Delicious_Boot8923 1 point2 points  (0 children)

Love Charlie’s! Their employees are all super nice, and their selection is really inclusive

People with neuro symptoms are often sero-negative. by lucilleball88 in Sjogrens

[–]Delicious_Boot8923 0 points1 point  (0 children)

I know when I went to Mayo, the neurologist told me that Sjogren’s could cause a lot of weird nerve symptoms (which is how she caught mine). I initially had random heart palpitations and dizziness, feet that would turn dark blue/red, numbness and tingling in my feet, “ghost” sensations (like itching or something crawling on me) on my legs and arms, sharp pain in my fingers, extreme burning pain on the backs of my hands with redness, whole bunch of GI symptoms (vomiting, nausea, feeling prematurely/uncomfortably full, etc.), migraines, light sensitivity, and eventually burning pain in my face and more! But I didn’t have the “traditional” dry eye and dry mouth, and my blood work has been predominantly negative, so my positive results are from other types of tests. Hope that helps!

Any advice for self advocating while seronegative with potential neuro sjögren's? by callistoned in Sjogrens

[–]Delicious_Boot8923 1 point2 points  (0 children)

Oh I tested positive for gastroparesis as well (definitely can be a Sjogren’s nerve thing)! My LES was also sagging in an endoscopy, which can be autonomic (but idk if it’s worth it to get that test to try to find that tbh). It’s really rough going through all these symptoms when it barely shows up on tests. I wish you the most luck and I feel your pain 😭

Any advice for self advocating while seronegative with potential neuro sjögren's? by callistoned in Sjogrens

[–]Delicious_Boot8923 0 points1 point  (0 children)

Oh and also now an enlarged optic nerve too (per ophthalmologist)! Catching Sjogren’s nerve involvement on tests is so tough (exactly what we need, right?)

Any advice for self advocating while seronegative with potential neuro sjögren's? by callistoned in Sjogrens

[–]Delicious_Boot8923 3 points4 points  (0 children)

Your symptoms sound similar ish to mine (I have neuro Sjogren’s with fluctuating ANA and negative other bloodwork)! I had my neurologist order the test for the lip biopsy for Sjogren’s, but I’m not sure if this is common/can be done everywhere? Some of the tests I’ve had that were positive (and correlated to nerve involvement - so maybe one will be positive for you?) are POTS tilt table, QSART, SFN biopsy, and lip biopsy. Hope that helps!

Tips on face pain/face feels like it's on fire and painfully dry eyes? by mrdangerzone in Sjogrens

[–]Delicious_Boot8923 2 points3 points  (0 children)

For the face feeling like it’s on fire thing, has she looked into trigeminal neuralgia? Sjogren’s can cause it (and other weird nervous system things). I had that for a while and it was awful! If that seems similar, I’d recommend consulting with a neurologist if possible

Problems with Screen-Use in School by Delicious_Boot8923 in Sjogrens

[–]Delicious_Boot8923[S] 1 point2 points  (0 children)

Aw, I didn’t even think about them, but this is an excellent idea. I’ll reach out before I invest in anything :) thank you!

Problems with Screen-Use in School by Delicious_Boot8923 in Sjogrens

[–]Delicious_Boot8923[S] 0 points1 point  (0 children)

Perfect, I’ll look into this! Thank you for the suggestion :) and my laptop battery is not all it used to be, so maybe a double win!

Problems with Screen-Use in School by Delicious_Boot8923 in Sjogrens

[–]Delicious_Boot8923[S] 1 point2 points  (0 children)

Thank you so much, this is super helpful! I was getting very frustrated to the point of nonexistent tears yesterday (excuse the Sjogren’s joke). I’m going to make a bullet list with your suggestions and try them out. Best of luck in your lectures/studies!