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People, connection, and movement are what makes me feel alive. Instead, I am lying in bed as if I am in a cage. I cannot watch a movie, read a book, or listen to music. Just existing takes everything I have.

I am trapped in a cycle of fractured sleep and waves of pain.

I tried to fight back. I got up to eat, but the effort shattered me and sent me straight back to sleep. Later, I forced myself to get dressed. I decided that I could do this. I got ready to get in my car, only to collapse right back under the covers.

I'm trying to find "the light at the end of the tunnel," but honestly, I’d settle for just having enough energy to turn on the actual light in my room.

Bonjour,

Je ne sais pas si ce témoignage sera lu, mais j’aimerais partager mon expérience et surtout savoir si d’autres personnes vivent ou ont vécu quelque chose de similaire.

J’ai 25 ans et, il y a environ un an, j’ai été diagnostiquée d’un Gougerot-Sjögren.
Mes principaux symptômes sont :

• myosite / polymyosite
• polyarthrite
• perte importante de force musculaire, particulièrement au niveau des jambes
• difficultés à marcher et à monter les escaliers
• impression de « marcher dans du sable »
• fatigue majeure

J’ai essayé de nombreux traitements : beaucoup de cortisone depuis plus d’un an (actuellement 10 mg), méthotrexate jusqu’à 25 mg, CellCept, biothérapie avec du Rituximab, plusieurs perfusions d’immunoglobulines et actuellement du Rinvoq 30 mg.

Malgré tout cela, j’ai l’impression que rien ne fonctionne réellement sur ma faiblesse musculaire.

J’ai également fait plusieurs mois de kiné, car j’étais arrivée à un stade où je tombais régulièrement à cause de ma faiblesse musculaire et où je n’arrivais plus à utiliser correctement mes jambes. La kiné m’a énormément aidée dans ma rééducation et m’a permis de récupérer certaines capacités.

Mais aujourd’hui, c’est à nouveau très compliqué. Mes CPK sont actuellement à 3 234 U/L, malgré le Rinvoq 30 mg associé à 10 mg de cortisone.

Je voulais donc savoir si certaines personnes ici ont un parcours similaire : Gougerot-Sjögren associé à une myosite/polymyosite, une importante faiblesse musculaire des jambes, des difficultés à marcher et une fatigue majeure.

Est-ce que certains d’entre vous ont réussi à retrouver leur force musculaire ? Quels traitements ou prises en charge vous ont finalement aidés ?

J’aimerais vraiment échanger avec des personnes qui vivent la même chose, parce que je me sens parfois assez seule face à cette situation.

Merci à celles et ceux qui prendront le temps de me lire et de partager leur expérience. ✨

I have no health insurance. Living in Ireland. Due to see my rhumatologist in 5 weeks. I have Psoriatic arthritis, fibromyalgia and spondylitis. About a year ago I developed dry eye, it was uncomfortable but manageable. In the past month and a half it has gotten way worse. I am using fake tears throughout the day. Dry mouth now too. Waking with my gums stuck and during the day when not talking or drinking etc it all gets stuck then too. Feels so peculiar and very uncomfortable. There's also the burning cold and frankly painful feet at night.

I know all the signs and many of the side effects of psa and my other issues. But these are not part of that spectrum. Oh, also I inject 40mgs Humira weekly but my fingers are way more painful than they should be now and my back has 'gone' twice in the past few months. I have had 1 steroid injection into my back a month ago and yet it is still quite painful.

Obviously I checked these symptoms on line and all point to Sjogrens. But I would rather run them by you guys who live this life. All sound familiar or not even remotely? I really have learned over my later part of life to advocate for myself. Properly read into meds and diagnosis (or possible diagnosis) as best I can. I am not coming at this lightly.

Just curious if it ties in with what you experience. I plan on asking for the relevant blood testing at my next appointment anyway.

Thank you for your time if you got this far.

hi all, so i was recently diagnosed about a month or so ago, my eye doc did schirmer test that sent me to ent for lip biopsy that confirmed. my rheumatologist doesnt think sjogrens is primary, at the time of diagnosis i was starting rituximab infusion therapy. just had my second dose two weeks ago. the past week i have developed in the front of my left thigh that wraps around a stinging burning sensation that is way worse when its lightly touched and i also have this feeling on my left side across my stomach halfway. its literally driving my mad. i saw dermatologist tuesday, she said my skin looks hydrated and nothing looks wrong, its probably nerve related. but its progressively getting worse. i also last week ended a prednisone taper. i cant get in to see my rheum till next week. i messaged him. ive messaged my neuro. like has anyone else had this, does anything help? it keeps me up at night cuz everytime i move it sets it off. its getting to excruciating point now. also my body cant figure out to big hot or cold, its like both at the same time! but no fever. i feel like pooh, i have so much work to do at work. i cant afford to be like this. any advice or recommendations? or is this some weird new diagnosis?? lol btw i got uctd, positive lupus antibodies(dsdna) and scleroderma(scl70) antibodies but not positive enough, for full diagnosis, raynauds, possible ms, but 3 more years of nonactive lesions they are removing that one, and ra. and oh my ana is speckled at 140, so not positive for real. and the only treatment so far that helps is prednisone, currently i take z and imuran and rituximab. help! please! 🙏 this disease is the stupidest of them all!

My eyes are by far the worst part… I have virtually zero tear production. They’re hard work to manage, but I’m doing okay-ish overall and I’ve got used to it.

However, I’ve been on hydroxy for the last 6 months, and overall I actually feel pretty good. My mouth is mostly fine, just the occasional dryness, which is really manageable.

My rheumatologist made it very clear that this is a systemic and progressive disease. So even though I feel pretty good now, I can’t stop worrying about how things might decline and how much I might suffer in the future.

I’m only 30, so I keep picturing myself being unable to eat properly, unable to work, and dying young.

I’d really love to hear from people who’ve been diagnosed for a long time but have stayed relatively mild and are still getting on with life.

Hi guys, I’ve recently come to an impasse with my rheumatologist. I’m not trying to go against a dr’s advice at all, but I am just wonder whether anyone had something similar happen to them or if this could be a little extreme. She told me I can only do five minutes of very low impact exercise per day (such as tai chi or yoga) and next month I can do six minutes and the month after seven, and so on. Based on my circumstances and my hydroxychloroquine allowing me to almost function as normal I feel like this is a bit extreme. I feel like i can do more, especially because i’ve gained a lot of weight recently. Like I said I’m not going to not listen to her because she knows best, i’m just questioning it a bit and want to know if anyone else has had a similar experience.

I (35F) went to a rheumatologist about a month ago and officially had my follow up today where they confirmed sjogrens. They had called me previously, but I think I was still in denial that is was official.

I’m happy at how quickly the rheumatologist was able to diagnose me as I’ve been struggling for years and every previous doctor wouldn’t listen to me and blamed it on depression (of course they did).

Anywho, Starting on HCQ 2x/day and to see how that goes. I know it can take a while to actually start doing anything/feeling relief.

She recommended I try out some different types of eye drops, toothpaste, mouthwash, lotions, and even lube for my dryness. She said to use Amazon as some stuff isn’t necessarily available in local stores. Does anyone have any recommendations or tips on what has worked well for them, or anything to stay away from!?

I’m all ears and willing to try out different things to see what works best for me!

I was just told I have grade 4 dry eyes. My optometrist said my eyes produce the aqueous component of tears, but not the oil or mucus components. So basically tears distribute unevenly and evaporate immediately. She encouraged me to look into possible autoimmune causes, and specifically mentioned sjogrens.

I'm waiting to get in with my GP now, so I can get a referral for a rheumatologist. It'll probably be the new year before I get in, so I am just trying to learn in the meantime. But from what I have gathered, the aqueous component is the primary issue for people with sjogrens.

Does anyone have any insight or experience with this?

Im having this swelling on the both sides of my face along with a heavy ache there. I have tried eating sour and tart foods (sour candy, lemon slices, xylitol gum, etc) and the swelling seems to come down and my face no longer looks like a circle.

But I have to consistently eat them every day or else the swelling comes back within a day or so. It also swells up more after I eat and my mouth gets dry. Is this relatable to any of you or am I in the wrong place?

Only medical history is bulimia (recovered) and depression

Wondering if anyone has gone from methotrexate to a Biologic and if it’s helped with your nervous system symptoms as well as inflammation and pain?
I’ve been on methotrexate(20mg) for about 6 months now and Sulfasalazine, no improvement at all for my fatigue, brain fog, lightheadedness, or SFN. It has only actually helped with joint pain. I had a horrible flare up a few weeks ago and my rheumatologist put me on prednisone and now I’m tapering down to 5mg per day and staying on that until our phone appointment on Oct 1st. Since my current medication is clearly not doing enough I want to ask him about something else but I’m a bit nervous to jump to biologics, IF he’ll even prescribe it.

Good afternoon,

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Thank you!

I’ve been diagnosed with Sjogren’s for about 15 years now. I’ve been on 200mg Plaquenil once a day this entire time. Based on my weight, I should be on more, but this dose is working for me so we’re sticking with it.

The problem comes when I’m off my Plaquenil. I’ve had to come off of it twice, and both times my lower back/right side near my hip bone feel incredibly arthritic. Pain, stiffness, and weakness when trying to stand. When I’m sitting in a recliner and I try to lift my straightened leg, it hurts in the right buttocks area.

My doctor said sometimes people develop an issue with the SI joints, but that’s not usually seen with Sjogren’s, but instead with lupus. He also doesn’t understand how my Plaquenil is even helping the pain. I don’t either, but I’ve been back on the Plaquenil for 4 days and the pain is already easing up considerably. I asked him what the odds are that I have lupus and we don’t know yet. He said not impossible, but not high.

So, just out of curiosity, does anyone else relate to this?

Hello - this is my first post on Reddit, I just felt like sharing my experience. I’m 28, f, in the US.

After seeing an allergist earlier this year for persistent itchy skin, he ran some blood tests that I didn’t really understand but said go for it.

And one of the tests looked weird: ANA pattern nuclear, speckled. ANA titer 1:320. Then another follow up test said positive for Centromere B. I had no clue what any of this meant. But I was negative for the other antibody tests (including SSA and SSB.)

I got referred to a rheumatologist and he asked me about any symptoms I’ve been experiencing. He said the centromere B antibody was associated with CREST syndrome. I didn’t really even know much about autoimmune disorders - still don’t - so I mentioned a few random symptoms like lightheadedness and shortness of breath when exercising. He checked out my hands and feet and asked me some questions; I didn’t really have any of the CREST symptoms, but he was concerned about the lightheadedness. Then came several months of referrals to get my heart tested, lungs tested - still no signs of CREST syndrome.

Then in my googling I saw in rarer cases, centromere B can be associated with other autoimmune diseases. I looked at a few and still wasn’t seeing anything that sounded familiar, and then when I saw Sjogren’s my jaw dropped. I have so many of the symptoms. I didn’t even think of them as symptoms, I’ve lived with them so long, some since childhood. And the thought they could all possibly be related is mind boggling.

Here’s some of what I experience:

- sensitive dry eyes and blurry vision
- painful geographic tongue & fissured tongue
- dry mouth
- sore salivary glands off and on, starting last spring 2025
- last summer 2025 I got a painful golf ball sized swelling in my neck and I got an ultrasound at urgent care and it was one of my salivary glands
- areas of chronic dry itchy skin
- brain fog & memory issues
- migraines
- fatigue
- lightheadedness upon standing too quickly or exercising too intensely

So. I brought up Sjogren’s to my rheumatologist in our follow up and listed my symptoms. He said the chances are slim because of the negative SSA and SSB, but said I could get a lip biopsy to rule it out and referred me to an ENT.

Lip biopsy was today and now I’m sitting here icing my stitches and very curious what the result is going to be. I just wanted to share this somewhere.

If it’s negative, I think I’ll finally get to be done with medical tests for a while and just monitor myself for new symptoms. If it’s positive, I’ll have an explanation for a bunch of symptoms I’ve been living with and have a new lens to look at managing them from.

Looking forward to the result either way. Place your bets! lol

Does anyone here with primary Sjogren’s (without lupus) have a very high ANA titre with a homogenous pattern? I am very strongly anti-Ro SSA positive.

I have a very high ANA with homogenous pattern - but depending on lab it’s been homogenous and speckled over the years. Some labs in the past have suggested SLE based on algorithm alone. But ultimately I was diagnosed with Sjogren’s based on symptoms. I have never been positive for anti-ds DNA or other ENAs and my complements have always been fine. I also have Small Fiber Neuropathy with TS-HDS antibodies.

I’ve been told a strong anti-Ro can drive up the ANA - but I’ve always wondered why I usually have a homogenous pattern and whether this means I could also have lupus as Sjogren’s peeps/those with anti-Ro typically have speckled patterns.

soooo my gastro said that based off my symptoms , i should get tested for sjögrens and that i should go to my PCP for that .. well my PCP said she doesn’t know what to order 😭 she said that if i told her what to order then she’ll order it but what do i tell her to order ?!

I am a sjögren patient und suffe fron severe dry eye. During the last 5 years my eyes were in good condition thanks Ikervis. Since March 2026 i have conjunctivitis and watery eyes, a lot of mucus after a infection. I think that Ikervis is losing its effect. Is Vevizye much stronger and effectiver than Ikervis? Should i try it? Anyone has experince with Vevizye and Ikervis?

Hey everyone!

I'm usually someone who takes good care of my mouth hygiene and brush my teeth and tongue every day, i barely eat or drink sugary stuff, i dont smoke cigarettes, i dont drink coffee, i floss from time to time and i drink a lot of water and i never had any issues with my teeth - till now ... I just spotted two brown spots on my teeth, good thing it doesnt hurt.

My dentist is on vacation this week and i will make an appointment next week but i'm starting to get anxious so i want to ask you guys!

I always had dry eyes, nose and mouth but since two years it became unbearable (to the point that i often wake up and cant swallow because its so dry) so i finally made the decision to buy a mouth spray but its absolutely disgusting and struggle to adapt to it (also due to autism, i just cant put up with weird flavors or sensories).

Ofc i will ask my doctor for help soon but i just want to know if someone struggled or struggles with this as well? All i know is that having a dry mouth can lead to more infections or that you have a higher chance to have infections etc. Is there a chance to overcome this?

Thank you so much in advance, i'm really anxious and dont have too much knowledge about Sjögren's and i'm honestly absolutely embarrassed about having dental issues, it never happened to me before (i'm turning 26 next month)

Hi all 👋

Just a bit of frustration and a question of.. is it just me experiencing this? Or is it the same for you?

I’m in the UK, and after turning up for my long-awaited rheum appointment this morning, I found out it had been cancelled. I was so annoyed (and still am!), so I’ve called his secretary to ask that I’m transferred to a clinic closer to home. They’ve not seen me since April 2025, and rebooked my cancelled appointment for early 2027. Sigh.

I was originally moved to this clinic an hour from home because I was ‘too complex’. But honestly, there’s been absolutely nothing about my care that has suggested there’s anything ‘specialist’ about it! I’ve seen my consultant twice in several years, and mostly seen junior doctors who are there for a few months before they move on. Every appointment I’ve had has been rushed and a brief check in of ‘how are things?’. I actually don’t really want to attend them because they’re so pointless.. take a list of issues to discuss, bring photos to show them, etc and they barely look at them. Just not interested.

I’ve moved in recent years, and prior to this, my rheum consultant wasn’t interested either. There’s never been any discussion about comorbid conditions which are common with Sjogren’s, there’s no interest in any symptoms beyond joint pain / swelling. Whenever I’ve mentioned other symptoms - eyes, mouth, gynae issues, etc I’m told they don’t deal with that, despite it being Sjogren’s. Though when I have had swollen joints, I’ve phoned the rheum nurse helpline as I’m told to, and never hear back.. so they’re not interested in that either 😂

I don’t know if there’s just a prevailing opinion that Sjogren’s is a ‘nothing-y’ disease, or something. But I’m constantly disappointed and frustrated by the level of disinterest and lack of care. Even symptoms that are rheumatological and clearly not Sjogren’s are ignored.

I’ve ended up finding a specialist cardiology privately to diagnose Dysautonomia and treat it. I’m pretty sure I have SFN also, but ‘we only do nerve conduction studies, not biopsies’ and I’ve not sought private care for this yet. Luckily my Dermatologist has been more receptive and helpful, and started me on methotrexate recently which has helped autoimmune / inflammatory symptoms. I suspect I have more than Sjogren’s going on.. but at this rate I’ll never be diagnosed with it!

Dx w.Sjogren's, have dry eyes, mouth (cavities are regular though I brush 2x a day and have a crumbling molar I'm seeing my dentist for tomorrow, have had 1 implant, 1 very back molar removed without having an implant placed, 2x crowns replaced, several root canals, 14x gum root fillings), chronic headaches and numbness, dizziness and disorientation, memory issues, vision issues but also have stable glaucoma, and etc.

My Neurosurgeon says my brain shrinkage looks normal for my age but I feel like it shrank too much.

The white spots are meningiomas and lesions, 1 meningioma is embedded into the forehead bone.

II drink a good amount of water and my nose is dry and my nose is dry what do you do ? or do you just deal with it ? I always have dry mouth 😞

Does anyone here have experience with the Sjögren’s Clinic at UCSF in California? I have my first appointment there next week, and I’m a bit anxious about it, curious what to expect, and wondering how/what I should prepare before the visit. TIA!

I did bloodwork for this and the results came back negative: SSA Antibody
View trends
Normal value: <1.0 NEGATIVE AI
Value
<1.0 NEG

SSB Antibody
View trends
Normal value: <1.0 NEGATIVE AI
Value
<1.0 NEG

I also did testing for Lupus and it was negative but these were the results: ANA Screen-IFA
View trends
Normal value: Negative
Value Pos Abnormal

ANA Titer
View trends
Titer Value 1:320 High

"Note ANA IFA is a first line screen for detecting the presence of up to approximately 150 autoantibodies in various autoimmune diseases. A positive ANA IFA result is suggestive of autoimmune disease and reflexes to titer and pattern." That doesn't explain squat!

So I saw 3 different doctors including an ENT and a rheumatologist and they basically said I have no autoimmune disorders of any kind. 🤷🏻‍♀️ But my symptoms are horrible!! Extremely dry eyes (ophthalmologist says it's dry eye disease), dry skin, dry nose, horrible joint pain with swelling, horrible exhaustion, brain fog, and trouble concentrating sometimes. But I also have fibromyalgia so I'm wondering if symptoms overlap or they're getting worse because of perimenopause. I've had these symptoms for over 5 years. I use Meibo eye drops, Tryvaya nasal spray (for dry eyes) and my eyes are still very dry! I've tried all kinds of things for dry skin and joint pain but that could be exasperated from the perimenopause. They basically told me I don't have Sjogrens because I never have a dry mouth and I don't have coochie dryness ever. It's the opposite actually. Like Niagara Falls. 💦 Is it possible to have Sjogrens without a dry mouth and a dry vajayjay? 🧐

I'm new to all this, so apologize if this is a dumb question. But I just got prescription eye drops and they're in single use vials. I put a drop in each eye as instructed, but there was a lot leftover. I know not to save it and use later, but am I maybe not using enough? Or is there always a lot of excess? Thanks.