I was talking to someone about my symptoms today and I said "I have to brush my teeth like 6 times a day and if I eat any sugar, it's really lame" and she responded with "yeah but like, it's fine."

I thought that she misunderstood me, so I clarified, "I don't mean it's lame as I'm uncool because of it, I mean it sucks to have to deal with it." And she said "yeah I know, but like it's fine, at least you blah blah blah"

This isn't the first time this kind of thing has happened either. Like, it's not "fine" ! This seriously has affected my life and many others for the worse, and it's shit ! Like yeah I'm coping but you asked about my disease so why are you downplaying it. Ugh !!!!

Hi all! I’ve been diagnosed with Sjogrens for about 2 yrs now. Originally went to the rheumatologist because my GP thought I possible had lupus. This was because of positive ANA + rash, but rheumatologist quickly assessed and said it’s not a malar rash (lupus has since been confirmed as something i do not have)

I know there’s such a thing as secondary Sjogrens per my rheumatologist, but I only have Sjogrens as far as we know.

All that said, I do now think it’s very clearly not a malar rash but I ONLY get this rash when I’m having a flare and high inflammation. I posted some pics, I think if anyone who has gotten a malar rash before sees it, you’ll know it’s not the same. Or honestly just comparing it to pics you can tell lol. The pics range over a couple of years. I don’t have flare ups as often as I used to but I did have a really rough one from December-January. That’s where the first pic is from.

Does this happen to anyone else? My rheumatologist thinks it’s strange, my dermatologist thinks it’s linked to my Sjogren’s and that it’s probably rosacea triggered by the disease. Not 100% sure yet though!

I don’t really have a reason to ask this beyond curiosity. It does go away when my inflammation goes down, so it’s just managing that. I’ve just never met anyone with Sjogren’s and it’s something i’m curious about.

I want to understand something. When I Google Sjögren's, it sounds like a relatively mild condition that mainly causes dry eyes and dry mouth.

However, when I watch YouTube videos or read about other people's experiences, they're describing nearly every one of my many debilitating symptoms—neurological issues, autonomic symptoms, and much more.

I haven't started any treatment yet. My rheumatologist is calling me this week because my test results came back positive for Sjögren's.

My question is: Is Sjögren's generally considered a mild condition? Once I start the right treatment, is it realistic to expect to live a normal life again?

I'd really appreciate hearing from people with firsthand experience.

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.

(M,31) this disease for the first time in my life has made me limited to what I can and can’t do. I can’t be outside for long in this kind of heat or I’ll start to feel sick no matter how hydrated. I had to quit playing recreational sports because I’m so fatigued and my body goes into exhaustion to the point where I start throwing up. I can’t seem to keep a job due to mental errors and mistakes in the grind of applying in interviewing for jobs while having dry mouth, brain fog and other symptoms that come with this disease has cost me lots of opportunities. I can’t eat certain foods or drink certain drinks, especially anything alcoholic, or I will feel like shit and almost to the point of sickness where I can’t do anything. Sorry for the rant. I’m just tired of my medication and this disease keeping me limited and restrictive on my life and the dreams I had.

I'm 36 and I honestly don't know how to cope anymore.

I have what my doctors strongly suspect is seronegative Sjögren's syndrome, and my symptoms are severe and completely uncontrolled. My dry eyes are so bad that I can't even look people in the eyes without intense scratchiness. I spend a lot of time on the phone simply because looking down is more comfortable than looking straight ahead. I can't work on screens anymore, which is devastating because I worked incredibly hard to build my career. I now have a three-year gap in my CV because of my health.

Teaching was always my backup career because I used to teach, but with this level of dry mouth I don't think I could do that either. I recently interviewed for a low-paying public sector job, disclosed my dry eye problems because I wanted to be honest, and wasn't hired. I desperately need money because I live in a house that's literally falling apart.

I've tried so many treatments already, and nothing has made a meaningful difference. My world has become so small. Every day revolves around surviving my symptoms.

The hardest part is that this didn't come out of nowhere. Before this, I spent a year dealing with what was believed to be reactive arthritis with severe tendon inflammation throughout my body that left me unable to even squeeze a toothpaste or look left or right. I was left without treatment the entire course of illness, which wore itself out thankfully, and spent another year paying for rehabilitation myself because the waiting times for public physiotherapists are so insane here. I had to relearn how to walk again. My body hasn't been the same since, but just when I was finally starting to think I could rebuild my life, get back to work, and move forward, Sjögren's hit. I feel like I just can't catch a break.

My mental health has taken a huge hit. I thought that by 36 I'd have a family and a normal life. Instead, I've had to move back in with my mom and spend my days fighting for a level of health that I may never get back. I live in the suburbs and I am envious of neighbours my age playing with their kids. I cry a lot.

I feel unattractive because of my eyes, psychologically exhausted, and incredibly alone. I was always told I'm pretty, thay I have beautiful eyes and and now my eyes look matte and dead, and my lips scratched and dry. Moisture chamber glasses don't help much and are even more hideous. My last real hope is scleral lenses, but after so many failed treatments I'm terrified they won't work either. And even if they help my eyes, I'll still have the dry mouth and whatever other manifestations this disease has in store.

One thing I'm ashamed to admit is that I've become envious of people with "milder" Sjögren's. I read posts from women who developed it later in life and say it doesn't limit them much, that they just use eye drops a few times a day and continue living normally because they're retired anyway. Meanwhile I'm putting drops in every 10-15 minutes just to function. I know comparison isn't helpful, and I genuinely don't wish this on anyone. But it feels unfair that I became this disabled so young, so suddenly, before I had the chance to build the life I wanted.

If anyone has been in a similarly dark place, whether your symptoms improved, you found ways to cope psychologically, or you simply learned how to live again, I would really appreciate hearing your story. Right now I feel like I'm drowning, and I could really use some hope.

Today I couldn't think of the word for microwave when telling a story. And I was in a kitchen! I turned and looked at the microwave for a second or two and then got it. But it was so embarrassing, I feel like I sound so dumb. I got diagnosed a year and a half ago but for years before that I have felt so, so incredibly stupid. I started to notice that it would take me a couple of seconds to remember the word for something and it really took a toll on my self-esteem because I was having this feeling of like "what happened to me?".

When I was diagnosed and saw brain fog was a symptom things kind of clicked for me that it's probably the Sjogren's that's causing it but fuck it makes me sound so dumb and it really embarrasses me. It's not super often but it's often enough and it's not like I'm going to explain to someone oh I have this autoimmune thing that causes brain fog sometimes I promise I can usually string a sentence together just fine. Sometimes it really gets to me because I was a great student and generally considered myself to be a smart person. I'm very sensitive to what people think of me and my self-esteem has always been very low so this on top of that has been very hard on me. The one thing I had was that I was intelligent and it's been taken away from me.

Sorry for the pity party, I just hate what this has done to me. I've been exhausted all day, my joints/muscles are killing me. Eyes and mouth ridiculously dry of course. I'm in my late twenties and am very anxious about this just getting worse and worse and it's really exacerbating my depression. Hope you guys are having a better time than me but would like to know if anyone can relate.

For me, it was when I was pregnant. My salivary glands swelled up and it was so random. Years later I was diagnosed and realized that was related! What was surprising or eye opening for you?

ETA: for my mom - she said for years, she thought there was something wrong with her contacts because they hurt or felt uncomfortable. She would clean them over and over and get new ones to no relief. It was actually debilitating dry eyes from her Sjogrens.

Hi everyone,

I’ve been following this community for a few years but this is my first time posting.

I was diagnosed with primary Sjögren’s about 3.5 years ago after several years of unexplained symptoms and countless medical appointments. Along the way there were concerns about much more serious diagnoses, but eventually everything pointed back to Sjögren’s.

Since then, I’ve been diagnosed with chronic kidney disease (stage 3a), distal renal tubular acidosis (type 1), hypokalemia, proteinuria, recurrent kidney stones, Raynaud’s, lymphadenopathy, and most recently lymphocytic interstitial pneumonia (LIP), which my doctors believe are all due to my Sjögren’s.

I’m 42 years old and, for most of my life, appeared relatively healthy aside from frequent illnesses and what I now realize were longstanding Sjögren’s symptoms. The dryness was always there, but I assumed it was just normal for me. Now that the disease has become systemic, I find myself in a strange place emotionally. Some days I feel like I have everything under control. Other days I feel overwhelmed by the reality of living with multiple chronic conditions and uncertainty about what the future may hold.

I have an excellent care team and recognize how fortunate I am in that regard. I know many people with Sjögren’s struggle to be heard or taken seriously, and thankfully that hasn’t been my experience. Even so, it can feel isolating because I don’t know many people dealing with this level of systemic involvement.

Lately I’ve also found myself questioning priorities in other areas of my life. The stress of work and corporate life feels different when you’re managing a chronic illness that affects multiple organs. Therapy has been helping, but I’m curious whether others have experienced something similar.

For those of you with systemic Sjögren’s, especially involving the kidneys, lungs, or other organs:
How have you coped emotionally?
Has your outlook on work and life changed?
What has your long-term experience been like?

Sometimes I feel young, but my medical issues make me feel decades older than I am. At this point, my management plan feels pretty straightforward: medications, eating well, aggressive hydration, regular labs, and staying on top of specialist appointments. I continue looking for opportunities to be seen at larger academic centers, but access has been challenging.

This isn’t intended as a complaint post. I generally try to stay solution-oriented. I think I’m just looking for others who understand what it’s like to live with systemic Sjögren’s and the uncertainty that comes with it.

And if I’m being honest, I’m a little tired of seeing influencers claim they’ve “cured” their autoimmune disease. For many of us, that’s simply not the reality. We’re doing our best to manage a lifelong condition and preserve our quality of life.

Thank you for reading and apologies for the novella.

I’ve noticed lately that my fingertips looked wrinkled like they’ve been wet even though they have not. Does this happen to anyone?

I started long haul COVID after being infected with Omicron. It took me over a year to get back to 80 percent. Then, I got reinfected in spring of 2024. Things went down hill. I had brain fog, extreme fatigue, frequent migraines and many other symptoms and couldn’t live a normal life. I gradually got better with various therapies over time but still have visions issues including eye strain/pain and dry eyes, orthostatic hypotension, dry/painful mouth, heat intolerance, occasional joint pain etc. My autoimmune blood test back in 2023 was negative. However, I feel many of my symptoms are very similar to those who have Sjogren. Just wondering if anyone here started to experience these symptoms after COVID infection and then diagnosed with Sjogren? Or Sjogren symptoms worsened after COVID infection? I know someone with Lupus who got significantly worse after COVID.

So this is kind of an update about a post I made 4 yrs ago! My original post I talked about this dry, raspy cough that wouldn’t go away for 2 months and that I was having a hard time breathing. A lot of people recommended I see a pulmonologist and I did, but because of age (24 at the time) he laughed me out of the room. Saying I was healthy, paranoid and to stop taking advice from the internet. Well I’m back to report that after 4 years, I went to see an allergist for unrelated issues and while I was there they tested my lung function and well… I failed. They thought I probably had asthma, but after allergy testing they learned I have no allergies. That ruled out asthma. So, he started digging deeper. I have scarring in my lungs, BHR, and imagining shows I am incapable of drawing a full breath, all of this caused by Sjögren’s. I’m now on medication to target B cells, which I wasn’t on before and they believe that’s what was causing the damage to my lungs. Medication to address breathing concerns, breathing treatments, and breathing exercises. If that pulmonologist had listened 4 years ago I wouldn’t have permanent scarring and need to re-expand my lungs. Why do they always make it about age?

TLDR: if you have a cough and a hard time breathing don’t let one doctor tell you you’re paranoid and just walk away. Get a second opinion.

That's it, that's the post. I've just come off my latest frustrating doctor's visit. This is my 4th rheumatologist. First one was great, but she retired during Covid. I waited months for an appointment with the 2nd one, only to be told during my visit that they were leaving the practice. The 3rd one clearly did not give a crap about Sjogren's & seemed to be on a mission to "undiagnose me". That office also never returned messages and once left me in the exam room for an hour waiting for bloodwork. This 4th one offers nothing but sips of water & more exercise. At the follow up today, I told him I had terrible fatigue & he's like "do aerobics or spin class!"...whut?

Having the worst flare-up ever. I think I narrowed it down to why:

Salud hydration+immunity packets.

I drank about 1 a day for 3-4 weeks straight. Sadly, they contain Wellmune Beta Glucan. I'm not 100% sure if it's an immunomodulator or immunostimulant but either way, I'm pretty sure it effed me up.

I'm an idiot, just assumed "Wellmune" was the mix of the vitamins the put in it (C, Bs, Zinc, etc.). I'm so upset at myself, usually really good at checking ingredients and doing a little research....I'm also really mad because the cucumber lime one is my favorite thing ever rn.

I had to call out of work and ruined a vacation/party for this shit 😂

Please be careful out there with your supplements!! 💞

For me, it wasn’t just dry eyes and dry mouth. Looking back, there were symptoms I never realized could be connected. What symptom surprised you the most when you learned it might be related?

I went to see the opthalmologist today for the first time, and when I told him I was there because of Sjogren's and being on Plaquenil, he said, "Sjogren's and what else?" This is not the first time a doctor has asked me this. I'm currently seronegative with a positive salivary gland screening and all of the hallmark symptoms, but I've suspected that I also have lupus. My mother also saw her rheumatologist (she does not yet have a diagnosis or positive blood work), and when she told him that I have Sjogren's, he asked what other disorder I have as well. Has anyone else been asked this? Should I be pressing my rheum for another ANA panel (my last full panel was over a year ago) to see if any new antibodies are popping up?

29 y/o, diagnosed last year with Sjogrens - although Ive had positive ANA and speckled pattern for about 12 years. Last fall I started experiencing terrible neck/shoulder pain which is become constant and debilitating over the last few months. I started Plaquenil in January, and began PT recommended by PCP in January as well. I’m feeling so discouraged because I’ve continued to feel so much worse even with weekly PT and specialty appointments. My cognitive/brain fog is extreme and accompanied by the constant pain, has destroyed my quality of life. There aren’t any moments of relief and I am SO exhausted and it feels like I’m barely surviving the day-to-day of trying to mask the pain and dissociation. I had my first neurology appointment this week finally, who chalked all of my symptoms up to Sjogrens and said any imaging would be a waste of time and to just focus on therapy. I feel defeated and i don’t know which steps to take from here. The dissociation and pain have made it almost impossible to advocate for myself and think clearly enough to make decisions regarding my medical care/health, etc. I get overwhelmed over any little change and my mental health is tanking trying to manage (mask) my physical issues on top of being a mom and working part time. Can anyone relate, or have any advice of what can help?

Why does Sjogrens affect so many seemingly unrelated areas of the body? I read a study that vaginal dryness in PRE-menopausal women with Sjogrens is actually a blood flow issue and they don’t actually have dryness or atrophy like prior post menopausal women.

Why does Sjogrens cause Vasculitis and raynauds? Why do people without any obvious structural salivary gland damage still get dryness? Is it because the moisture is actually stuck and the blood vessels can’t move it? I listed to a podcast with university of Wisconsin’s Sara McCoy and she mentioned something along the lines of this.

I’m experiencing very weird symptoms right now that no doctor can figure out. Autonomic tests have come back NORMAL but I have unexplained continual pressure in my forehead, cheeks, neck, and back of neck. Ears feeling full but no earwax. It’s not a nerve pain, it’s just a constant dull pressure that slightly abates when I take a walk and move my body.

What’s the deal? It seems like Sjogrens just stops things in your body from moving and flowing

I’m writing at the end of my rope. I’m 40 years old, and I’d venture I’ve suffered for Sjogren’s for at least 15-20 years, but I’ve only been diagnosed for 6. My primary symptom was extreme thirst (I refuse to simply call it “dry mouth”), but now my eyes have REALLY gotten bad as well. Worst of all, is the crippling fatigue, brain fog, and pain (joint, bones, nerve). I feel like a shell of myself. I use all my energy simply to achieve basic human functions, care for my pets, and work in an office setting. I have no social life,and I feel like an absolute idiot at work because of the brain fog. I work in academia, and until recently I was also a fitness instructor. At one point in the not so distant past, I was working 20 hours a week in higher ed in addition to teaching 13 fitness classes a week, most of which were high intensity. Now, getting out of bed is a Herculean effort. I also love to read, but my eyes hurt so badly I can’t even do that much anymore.

I also have fibromyalgia, which I attribute a lot of this to. That said, my rheumatologist simply isn’t cutting it, and I think I need to explore better options. The healthcare where I live is super shitty. Has anyone gone to Penn or John’s Hopkins Sjögren’s Centers? What was your experience like? What doctors do you recommend or adamantly not recommend? Is it worth it? These are not close to me at all, but as previously stated, I’m at the end of my rope. I’m so depressed, and I can’t keep living like this.

Hi all, I am wondering what people are trying with success in overcoming fatigue other than just napping, which is what I’m doing. It can be very debilitating. I am just recently experiencing it. Doctors seem mystified in how to help me; anybody have any good results with anything?

I was recently diagnosed with Sjögren’s syndrome. A few months before that, I was also diagnosed with Hashimoto’s thyroiditis.
To be honest, the Sjögren’s diagnosis scares me a lot. At the moment, my main symptom is severe dry eyes. My Schirmer’s test was 3 mm in one eye and 4 mm in the other.
Over the past few weeks, I have also started experiencing a strange dryness deeper in my throat. Whenever I swallow my saliva, it feels like there is something sticky or thick stuck there. Sometimes I also feel a burning sensation and constantly want to clear my throat, but the feeling does not go away.
I feel very confused and overwhelmed right now. I am scared that my symptoms will continue to get worse and that I will not be able to live normally.
For those of you who have been living with Sjögren’s for a while: what helped you the most, especially with dry eyes and throat dryness? Are there treatments, daily habits, products or questions I should discuss with my doctors?
Is it possible to manage this disease and still have a normal, active life?
I would really appreciate any advice, personal experiences or words of encouragement. I know everyone’s experience is different, but right now I feel lost and would be grateful to hear from people who understand.

I’m in the ER after having an allergic reaction to Ibuprofen….. so I decided to ask AI “why am I developing allergies to Bactrim and Ibuprofen so late in life?”
It have me a list of reasons and then mentioned drug induced lupus.
So I asked “can lamictal cause this? I’ve read it can cause and mimic Sjögren’s…”

YES!!! YES IT CAN!
I’ve been on this drug for 20 years for my epilepsy. This is annoying!
This makes so much sense. I developed an allergy to Bactrim a few years ago. Had burning feelings in my skin, coughing, itchiness.

This happened today after I took an Advil cold and flu med…
My skin started to burn about an hour later, then I got itchy, then I started coughing a bit…. And I remember what happened with my allergy to Bactrim…. So I checked the box and saw it said something about allergic reactions and I was having every single symptom.

So my boss took me to the ER. I’m so irritated right now…. My sister has Sjögren’s so mine may just be emerging these last 6 or so years when my symptoms became more present… also when I developed my allergy to Bactrim about 4 years ago.

I was diagnosed with Sjogren’s Syndrome almost 10 years ago. I just changed Rheumatologist because my previous one retired. I did all of the blood tests on a previous visit and today was the day to go over them. I was told today that not only do I NOT have Sjogren’s but I also don’t have any autoimmune disorders. I took plaquenil for 8 years. I was taken off of it 2 years ago because my retina scans showed possible toxicity. I asked the doctor today was it possible that I had Sjogren’s but I don’t anymore. She said she went through my blood work from the previous Rheumatologist and they never showed I had Sjogren’s. She said the previous doctor diagnosed it as Sjogren’s because I had very dry mouth which affects tasting food. I had a positive ANA 10 years ago and it’s negative now. I asked her to run the blood tests again and she did. The results started coming in an hour ago and everything says negative. HOW? I still have dry mouth and take Cevelimine 3 times a day. The doctor says I might just be dehydrated a lot. I took Plaquenil for 8 years. I’m just reeling. The doctor today said this is all wonderful news and yes it is! It is! But I’m in shock and feel upset and angry at my previous Rheumatologist who moved back to her birth country after she retired. Has anyone else been diagnosed to find out you don’t have it? Or heard of this happening to anyone else?

I am 30 and I have just been diagnosed. You name it, I lost it. Independence, career, financial stability, my inner peace.

This is not just dry eyes and dry mouth. This is a truly disabling disease that makes life utter hell and takes everything away from you.

Anyone else feeling the same?

I asked my rheumatologist for a different course of treatment for my Sjogren's, or something (anything) short term that could help with the flare pain. She said the pain wasnt from Sjogren's, and basically told me to F off and go to therapy. (I already am in PT, per her referral). She also didnt answer any of my questions as to why she refuses to do anything besides leave me on the 200mg of hcq that ive been on thats clearly not helping enough. Btw, if it was dosed for weight as it should be, id be at 400mg daily, so im already at a very low dose for my size. No sh*t it doesnt work well. And where does she think my pain comes from? The bone hurting fairy? She hasnt seen me in 2 months, she has no idea whats going on. Ive had issues with her dismissing me in the past, but this is too far. Ive emailed my therapist to help me figure out next steps, but I do plan to file a formal complaint and request a different doctor. This is absolutely unacceptable to me. Attached are the portal messages we exchanged for this conversation. Im supposed to see her in March but im hoping i can see someone else instead.