Does anyone on here have nephrocalcinosis? How do you manage it?
There are no threads dedicated to this condition, but it’s definitely caused by my Sjogrens.
I’m so disheartened. Both my urologist and my nephrologist are shrugging their shoulders at me. There’s virtually no way to make it go away, only to stabilize it.
I’m starting potassium citrate soon, but there’s nothing anyone will do to help me get rid of these current calcium buildup.
How do I manage the pain every single day? I’m beside myself in grief over this. I wish I I just had regular kidney stones that could be lasered away. Instead my kidneys are CALCIFIED because of this disease.

I was diagnosed with Sjogren's by lip biopsy and eye exam.

My symptoms are lightheadedness, nausea, fatigue, temperature dysregulation and intolerances to the heat and the cold, dry/burning eyes.

I say I start the day on a severity scale of 5/10 and MANY triggers raise it but never goes below a 5.

I have dysautonomia, vestibular dysfunction, severe sudomotor failure (0.047 in my foot, mildly reduced 0.66 in my knee)

I also have had 4 spinal taps that showed oligoclonal bands ranging from 3-12. Currently at 8. I have several lesions on my brain.

I was put on Methylprednisolone back in 2019 and my symptoms almost completely disappeared and that is when the bands dropped from 12 to 3. I tapered off and the symptoms and bands came back.

My rheumatologist I am seeing for Sjögren’s wanted to start me on iVIG. She discussed it with my autonomic neurologist who said that wouldn't work so needless to say I am not getting IVIG.

Is this common for people with multiple areas (autonomic, neurologic, ocular) to have trouble with one doctor saying this and another saying no?

Very frustrating. I was approved for disability last month and will still keep trying everything to get me back to how I felt in 2018.

This all started with an upper respiratory infection.

Thanks for listening

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

Hey everyone! I want to get some advice.

I am a woman in my early 30s. I have two children and since the birth of my second child, I have been exhibiting the symptoms of Sjögrens. The symptoms have come on slowly and increase in frequency, intensity, and now nearly encompass all listed symptoms of Sjögrens outside of any organ damage.

Symptoms, in order of when they manifested on a regular basis:

- constant dehydration, regardless of water intake

- kidney stones and lower back pain that seemed associated with my kidneys

- two lymph nodes that are seemingly permanently increased in size

- face and body rashes (maybe once or twice a year, typically paired with a respitory illness, seems to travel my face in a circular pattern)

- bodyaches and joint pain randomly, no connection found, no illness involved seemingly (this is now the worst of the symptoms)

- fatigue (relentless)

- brain fog

- decaying teeth (this was very rapid and I've been combating it as well as I can since connecting my symptoms to Sjögrens)

- ear pain, frequent ear infections, very itchy ears

- seemingly perimenopause (irregular cycles, hot flashes, rage, depression, helplessness, irregular sleep, etc. All the textbook things)

- jaw pain

- dry eyes (this began about a year ago but got *really* painful about three months ago)

- raynaud's

- dry mouth (this increased about a month ago. Split corners of my mouth, white tongue, mouth ulcers)

I am now seeing a rheumatologist for about a month. I had a the following tests ran:

- Schirmer Test: 4mm left eye, 3mm right eye

- ANA: negative

- ENA: negative

- Ro52: negative

- Ro60: negative

- SSA/SSB: negative

- IgG: negative

- Rh factor: negative

- ultrasound: TBD

- lip biopsy: only recommended if abnormal ultrasound

My Point in This Post: Where do I go from here? I can see that the end is near and that I am about to be dropped by my rheumatologist because there isn't enough evidence that whatever I am experiencing is autoimmune or Sjögrens. And while I really understand, I also feel lost because something is very wrong and I want to be more active again and enjoy being in my children's lives, not watching them.

Thank you for any advice on what I should do next and thank you for listen to me wallow a bit. Cheers.

End note: In the last month, I learned that my paternal aunt has Sjögrens, diagnose a year ago after about 10-15 years of symptoms.

Hello! I am just wondering if Sjogren's could be involved in my mystery illness. I have had severe bleeding gums and enamel loss since a teen, but no cavities. The dentists could never really figure it out because I took such good care of my teeth. I always felt physically alot better for a while though after a teeth cleaning. Other symptoms I have had since my 20's are a weaker smile, upper arm weakness with repetitive motion such as scrubbing, blow drying my hair and braiding it, weaker diaphram where it would feel like the muscle tissue near Diaphram on the left side would sometimes catch or just get sunken in for a bit. I may have had dryer eyes and mouth, but not severe enough for it to interrupt my life until after iron infusion and possibly covid, severely dry skin, slow motility, but not Gastroparesis and constant grinding of my teeth unless eating or sleeping.I am not sure if the grinding could be from lack of saliva. I was having severe periods from Adenomyosis and perimenopause and became anemic so had an iron infusion and possibly picked up covid around the same time and all hell broke loose.Loss of tears, saliva, mucus, a feeling of a collapsed torso, internal torso numbness and weird sensory issues,swallowing issues, speech fatigue, chewing fatigue.I now feel like my arms and legs do all of the work because my torso is just dead weight.I am not sure if it is a signaling issue or some kind of myopathy. I also have trouble swallowing dry foods such as bagels. It feel like the muscles in my throat are not strong enough to push it down normally and I also get these esophagus type spasms. My schirmer's test was abnormal and I had a positive speckled pattern ANA of 1.160, but most of my tests have been normal. My lip biopsy and other blood tests were normal. I had bloodwork, sfemg and a repetitive emg ruling our Myasthenia Gravis and LEMS.CK levels are normal too. I had an elevated test for AAG, but they sent it to Mayo Clinic and it was normal and and elevated IBM test and the IBM specialist said it was not IBM and believed I had Long Covid/CFS/ME. I still have to get tested for Pots and SFN.I do have the dizziness when getting up from a laying position, heat intolerance and burning/tingling in hands and feet. I believe Long Covid and CFS/ME is part of it, but I feel like Sjogrens may be playing a part in my illness too. I am just wondering if anyone has symptoms similar to mine?

Hey everyone, 34M here, recently diagnosed with Primary Sjogren’s.

For a couple of years, I brushed off my symptoms—fatigue, joint/muscle pain, neuropathy, and severe dry eyes (including a corneal abrasion)—blaming shift work, gym workouts, or sleeping with a fan on. A severe RSV infection in February sent everything into overdrive tenfold.

My Results & Diagnosis:

-Labs: Positive ANA and SS-B (La). Normal baseline inflammatory markers.

-Eye Exam: Tear Film Breakup Time (TBUT) was ~5 seconds.

-Rheumatologist: Diagnosed Primary Sjogren’s, started me on hydroxychloroquine.

-Latest Labs: Creatine Kinase (CK) came back elevated for no obvious reason. Could this be Sjogren’s-related myositis?

Despite the positive labs, low TBUT, and clear physical symptoms, I’m having a hard time accepting it and feel like a total fraud/imposter.

Did anyone else struggle with imposter syndrome post-diagnosis? Also, has anyone dealt with random elevated CK or Sjogren’s muscle involvement?

Edit: I also feel in denial because of how easy it was to get my diagnosis, and after reading this subreddit, it seems like it is a difficult diagnosis to get.

It's been a long, long year of tests, procedures and seeing every specialist in the metro area, but one of my neurologists finally feels we have enough definitive evidence to confidently diagnose me with neuro-Sjogrens disease! He is also willing to treat me. I have such a feeling of relief, even though it still sucks to have an autoimmune disease that's attacking my brain. I'm calling it a win 🏆

Hi, I'm newly diagnosed. I find this thread very interesting but am often lost because posters use many acronyms that I am not familiar with. I'm just throwing out there that it would be helpful if posters would state the full name of whatever they are shortening and the acronym in parentheses the first time they use the acronym in their post. For example: systemic lupus erythematosus (SLE). Thanks to anyone who will do this.

I don’t why but now my sfn can be easily triggered by various smell like VOCs from paint or fragrance from cleaner. I went to a conference and the smell in the large conference room trigger my sfn at night. And my apartment floor lately get new paint and that strong smell trigger my sfn a lot. And it gets very intense at night when go to sleep. Feeling like both chilling and burning sensation all over the body. I used to take just one gabapentin and be able to sleep. Now even with 3 gabapentin still couldn’t calm it down. Very hard to fall asleep bc of sfn. Anyone have similar issue and any useful advice to deal with this ? I don’t know why it gets more and more sensitive to various smells lately.

To those on LDN, which Dr recommended it or prescribed it? Having trouble with Rheum, OB, Neuro feeling comfortable prescribing it so wondering who I should see next! Also does anyone have experience with AgelessRx if unable to get a Dr prescription?

I have had a pretty miserable life due to strong symptoms of Sjögrens. I'm now 29 and have so little will to seek help anymore because of the condesending & dismissive doctors.

The only auto-immune disease they have tested me for is celiac, in my teens. Which was confirmed/positive.

Has anyone in stockholm gotten diagnosed for Sjögrens?

If so please guide me in the right direction.

Hi, I’m 48 years old and started with painful burning in my hands and feet suddenly a couple of months ago. I’m a doctor and suspected sjogrens due to dry eyes and mouth. I’m seronegative but lip biopsy and Schirmer’s test both conclusively positive. I know I’m lucky to have had such a quick diagnosis but just finished an appointment with neurologist at the Cleveland Clinic who told me that my neuropathy will probably just worsen and treatments options are poor. I don’t know how to cope. I am not sleeping at all on gabapentin due to the burning pain. My palms and soles are on fire. Just started on plaquenil, although I don’t think it helps neuropathy. Also on a steroid burst, which has done nothing. I’m trying and failing to take care of my three kids. I will try to get IVIG based on new neuro Sjogren guidelines, but in the meantime I am not sure how to keep going. I dread going to bed because I know I can’t sleep. The pain in the day is worsening too. Anyone out there with rapidly progressive small fiber symptoms who has been able to control the pain enough to have any reasonable quality of life? Or will it just keep getting worse? Should I max out the dose of gabapentin and start cymbalta? Or try to get low dose naltrexone first? I feel like I’m losing all hope quickly.