r/Sjogrens

Hi everyone,

I’ve been dealing with persistent symptoms for over a year and still don’t have a clear diagnosis. I’d really appreciate any thoughts or similar experiences, I am done talking to doctors.

My main symptoms:

•	Severe fatigue (not recovering even after sleep, fluctuates, mostly worse after exertion, but didn’t found a REAL trigger)
•	Dry mouth and dry eyes (mouth not constantly severe, just after speaking and eating worse)
•	Cold hands and feet (even in warm environments)
•	Reduced pain sensitivity
•	General feeling of dysregulation, almost stopped sweating 

Findings so far:

•	Skin biopsy: borderline reduced intraepidermal nerve fiber density → clinically interpreted as possible small fiber neuropathy (SFN)
•	Lip biopsy: inconclusive, slightly under FS of 1 
•	Blood work: completely normal (including immunological panel), except slightly elevated IgG4
•	Early Sjögren’s panel: negative
•	No clear autoimmune markers

Doctors said also that my eyes don’t seem to be inflamed. OSS is without findings, Schirmer Test 0/5mm though.

Neurological findings:

•	Skin biopsy: confirmed small fiber neuropathy (borderline intraepidermal nerve fiber density)

•	Sensory testing: asymmetric sensory neuropathy affecting both small and large fibers

•	Sudomotor testing:
•	Regional autonomic dysfunction (not uniform)

•	Areas of reduced sweating + areas of compensatory overactivity

•	Pattern suggests neurogenic dysregulation, not simple gland failure

• Tilt table test:

No strong subjective symptoms, BUT objective findings: • Delayed orthostatic hypotension (significant BP drop) • Reduced heart rate variability • Impaired baroreflex sensitivity • Paradoxical norepinephrine response (higher lying than standing)

Overall consistent with sympathetic autonomic dysfunction

Rheumatology: • Multiple specialists consider a classical autoimmune disease (especially Sjögren’s) unlikely • They are also emphasized being very cautious with overinterpreting histological findings

Other observations: • I basically never get sick anymore (no colds, flu, sore throat for a long time) • Symptoms fluctuate but overall trend feels worse over the years • Dryness sometimes improves when eating/drinking/talking

My questions:

•	Has anyone had similar symptoms with normal labs but borderline SFN?
•	Can dysautonomia cause dry mouth/eyes and cold extremities like this?
•	Does this sound more like Long COVID / ME/CFS than autoimmune disease?
•	Any suggestions for further testing or treatment approaches?

Thanks a lot for any input 🙏

hey everyone, are there any non prescription methods that have worked for you, I have no access to xylimelts or similar ones, anything that has worked for you pls let me know.

in addition when your mouth goes dry, does everything become bitter?

whenever I get really discouraged I read about these women and I see how this disease affects us all differently- but there are people living life and doing well with Sjogrens…

Alexandra Vailas -social media influencer- head of a major business

Ellie Mecham - youtube Chanel mom blogger

Joyce the Dentist 🦷 - social media dentist with sjogrens

Alexis Christine- cute TikTok gal with Sjogrens -

I am sure there are many more - but these girls inspire me to keep pushing forward with this disease.

I'm nervous for results because I just want answers!

My ENT did it at a surgery center with anesthesia which I was super nervous for but I figured it would be a better sample.

I am pretty sure it will be sent to Quest Diagnostics.

😬😬 waiting game. He said 1 to 2 weeks but Quests FAQ says as early as 2 to 5 days but as long as 2 weeks.

I see neuro and sports medicine next week for neuropathy and joint pain and tendonitis.

Constant sinus infections, flu, jaw swelling, sore throat, fatigue. I do have dry eyes and mouth but nothing i would complain about it suppose. I do have thyroid eye disease and graves disease in remission.

Hello warriors,

I do not have an official diagnosis yet, but I am fairly certain it is Sjogren's. It came on lightly last year with dry eye. It settled down and came back hard! Dry mouth to the point of choking. Vision changes and dry eyes. My legs and hands have random jerking. Two weeks ago, sections of my feet were numb, burning, and sometimes extremely cold. Last night, I could barely walk. I have experienced major pain with my rheumatoid arthritis and other health fuckery. *Edit: fatigue and brain fog since last year.

The nerve pain is something else. It is so scary. I'm crying as I type this. The only relief is when I'm sleeping because I have sleep meds. My neurology appointment isn't until June. I'm working with my primary and useless rheumatologist.

At what point do I go to urgent care for this? Are there any tips or tricks to reduce the nerve pain?

Thank you.

Hey anyone.

I am dealing with condition called CIRS and mold toxicity. And Lyme on top of it.

I have so many symptoms from my toes to my hair. From libido to vision.

All started in the moldy apartment. I left and got initially better, but started developing dry eyes and mouth.

My ANA is 320 which mold can cause. Any other tests are perfectly normal.

My life is hell. I don’t know how it’s possible to ever recover from this.

I have a stuffy nose so I’m forced to mouth breathe and I’m pregnant i desperately need to sleep but I’m awake every single hour like my body physically can’t sleep through the mouth and throat dryness. I’ve been coating my mouth in biotene gel to no avail. Going on day two of this someone please help

I should probably have waited to see an actual rheumatologist. I was told the one specializing in Sjogren's is scheduling a year out, but I could see a PA (physician assistant) in a month. A month sounded better than a year, but there's no way a PA has equivalent education to a board certified rheumatologist.

So anyway her report (which I read in MyChart) contained some major omissions. I told her I had 2 teeth extracted in prior 3 years, this appeared in the report as 2 in 10 years. More important, she claimed she had done a comprehensive musculoskeletal exam of both upper and lower extremities, including reflexes and found no swelling, pain or limited range of motion in any joints. You'd have to be blind to not notice swelling and weakness in my right knee/leg; no reflexes were tested; and she did not examine my ankles/feet/toes - my boots never came off during the exam.

I also felt pressured to accept a lip biopsy. That might still be a good idea, but I don't want to do it. I'm referred for a chest CT scan but I might be better off seeing a pulmonologist for the asthma which has never been reviewed by a specialist in the 25 years (and multiple PCPs) I've had it.

Long story short, all my tests except SSA 60 were within normal limits so I have no diagnosis. I submitted my tale of woe to an AI program which said my exam was not wrong (I didn't mention the outright deception about musculoskeletal exam) but was inconclusive and I should see an actual board certified rheumatologist. Well Duh!

I wrote a message (which remains in my electronic chart) asking the PA to correct her report about these errors and omissions. I do that fearing some repercussions such as being labelled the "difficult" patient, but I don't want her misreporting to become a permanent part of my medical record. What would you do?

I posted a while ago about how I was being denied referrals to rheumotology even though I had a million symptoms and elevated test results. Thank you to everyone for the suggestions! I ended up seeing an ophthalmologist who confirmed spk and decreased tear production and I finally got approved for my appointment in a neighboring state (also another suggestion you all made). I appreciate all the help!

To begin while I do have SS, I also was told I have a muscle disorder called POLYMYOSITIS. I've gone 3 years without a diagnosis only the SS but none of the RHUMs thought my muscle weakness was from that I had a nurse let me try azathioprine 5mo And my weighted down arms felt perfectly normal while washing my hair 1 day the doctor took me off of the drug because she said it was messing with my liver fast forward to today nothing was helping my body my only symptom feels like head to toe even my tongue feels heavy filled with lead and weak. I've found myself at a any URO muscular doctor who gave me a thorough exam looked at all my antibodies and said he believes I have MYOSITIS he did AN EMG on my leg and confirmed it and said My only true weakness on my body, while it felt like the whole thing, were my legs only!! he insisted the rest of my body was fatigued even though I don't get tired it's just my body. Steroids high-dose helped my legs get the strength back which was a miracle but 41 year up till today nothing has fixed the muscle fatigue weakness I'm not functioning and I've been on 3 different immune suppressants in the last 15 months and 5IVIG sessions no change in my symptom I guess I'm posting here in case any of you have what I'm describing maybe this is part of the S.S. maybe one of you out of everybody has had the symptom and got fixed some other way please please please reply I really feel so lost and don't know what to do anymore! PS My positive antibodies include ss, ro60,ro52, jo1 ana 1.160 speckled. What's also weird is my CK and inflammatory markers are always very low almost normal which is why it took so long for help.

Every time I post something related to Sjogrens on Facebook (whether it be a repost of something or a post regarding chronic illness) she is there to comment that her Bravenly products will help. I’m ready to scream. I like her as a person but your drink powders aren’t going to do DIDDLY SQUAT for my symptoms. AHHHHHHH

Has anyone here had liver issues? The other day my daughter had tea colored urine. We thought it was a bladder infection, but there was no infection just a large amount of bilirubin in her urine. Now we are going down the rabbit hole of trying to find out what’s wrong. Again just wondering if anyone else has had this. She also has been having a lot of gagging, that sensation you get right before you throw up, but without throwing up.

I have several symptoms that could point towards autoimmune disease - trouble swallowing with proven oesophageal weakness, more generalised muscle weakness and pain, joint pain, joint rashes, mouth ulcers, migraines, sun sensitivity, possible gastroparesis, etc.

My Mum has Sjögren's and grandmother has autoimmune arthritis.

I think I have good reason to investigate with rheum but would like recommendations for PRIVATE rheumatologists in the UK who never suggested it could be health anxiety while you were trying to figure out what was wrong.

I would be so grateful, please and thank you.

I have a positive ANA of 1:160 Nuclear Fine Dense Speckled pattern which I understand usually does NOT indicate autoimmune issues? But prior to that I was 1:80 Nueclear Homogenous. Negative for all antibodies.

I have had issues with not being able to sweat a lot my whole life even when I worked out super hard. Then in my mid 20's (I'm 30 now) I started having dry mouth a lot but it would come and go. No big deal. Then last year my eyes suddenly got severely dry. I went to a dry eye specialist who did a tear production test on me and it indicated I was not creating enough tears in my eyes.

Then around that same time I went through my first super bad flare of dry mouth that was so intense and painful. Luckily it subsided and since then it comes and goes every few months with each flare lasting 2 or 3 weeks.

I saw that a new medication for Sjogrens is coming out this year and I'd assume for anyone to have it they'd need a definitive diagnosis of Sjogrens and I also want to try scleral lenses for my eyes which are not covered by insurance unless you have another condition like Sjogrens. So part of me wants to do the lip biopsy. I also just want to know WTF is wrong with me.

But I've seen some horror stories on here about people being in horrible pain, having speech issues after, a paralyzed lip, etc.

Just looking for some advice. I have it scheduled for this Thursday.

I was diagnosed in the summer of 2024 after a lip biopsy. It's been hit or miss on finding treatments that work. Pills, supplements, and infusions without getting any real results. I ended up going to Mayo in March 2026, but they didn't provide any additional information, it was a wasted 18 hour round trip drive. We were quite disappointed with them.

But anyways, from the middle of December to the middle of February, I was in a constant flare up. Then in February, I got Influenza B, after I got over that, I felt the best I've felt in a long time. Well now it's starting to come back into it. I started getting the fatigue and unable to concentrate the afternoon of 4/20. I took half a vacation day yesterday afternoon, but I still feel the same today, 4/22, and now I'm getting muscle and nerve pain.

What does everyone do about their job? I've asked doctor's about it, and I've asked our HR team about it, but I can't get any straight answers. HR wants me to fill out an FMLA form and use that, but it's unpaid, and I can't go without getting paid. As I'm typing this I see that it sounds like I want to get out of work, but that's not the case. As everyone knows there's good days and bad days, but I can't keep taking vacation time because I'm having a flare up. I'm currently trying to get through it, but I work in a fast paced, short staffed, office setting. So, me missing work or not being able to keep up is creating a snowball effect on my workload.

How does everyone else handle managing their symptoms and their job?

Thanks

I’ve been using Burt’s bees tinted lip balm when I go out but it never stays on and barely shows any color. I was wondering if anyone has a lip stain that stays on and doesn’t make your lips feel drier. In a perfect world I’d like one that I can keep applying Aquaphor or lip balm over to avoid them drying out. Please share what works for you!

It’s been extremely hard to get anyone to listen to me & not blame everything on my T1 diabetes. I had all of this going on b4 I was even diagnosed w/ diabetes. I’ve lost 2 pregnancies & I think it was due to something involving this. I’ve had multiple primary care doctors tell me they think it’s sjogren’s. Then they send me to a rheumatologist who runs 1 routine set of labs & denies it. I FINALLY found a rheumatologist who is taking me seriously & he put me on Hydroxychloroquine while he waits on further testing. This is a huge deal for me. Somebody finally believes me & sees how badly I’m suffering & they took action! I woke up today for the 1st time in years with saliva in my mouth & I cried! I’m only 34yo, but I have the body of an 80yo woman. Did anyone else become obese during their struggle to get help for this condition?? Because I’m retaining so much water & in so much pain that mobility is so hard for me. Doctors keep telling me to exercise more like I’m not in constant debilitating pain. It’s hard enough to do daily chores & take care of myself. Cannabis has helped some & I’m managing, but I’m in really bad shape. Did meds help u manage enough to lose weight? Honestly, I’m open to any tips or recommendations that will help. I just wanna be a normal 34yo. I have 1 miracle kiddo & I wanna be able to keep up w/ him.

https://people.com/carrie-ann-inaba-lives-with-constant-pain-exclusive-11954974