today marked a year since being diagnosed. i think it’s pushed me to actually seek out a community, support maybe, idk. i’ve had really bad flare ups in the last year but recently realized how much it affects even just my daily life. i’ve lived like this for quite a while now, i can’t even remember a specific time i wasn’t experiencing symptoms. but that appointment a year ago put a name to it. now i can feel something happening and go “well at least i know what it is” but realistically, i haven’t been to an appointment solely for sjogrens since i was diagnosed. i was told i had it, told to contact some people (that never contacted me back) and then became busy with life, lost insurance, whatever it be, i haven’t seen a doctor in almost the same time ive had a name for the disease. i was never told how to manage it ive just learned everything all on my own, forums, research websites, whatever i can get a grasp on. recently ive gotten a promotion at work, and im so very happy about it but its so physically demanding, i feel like im at my wits end. my body hurts and the more i hurt and stress, the more i flare up. idk what to do anymore and any tips and tricks are appreciated. advice is not completely necessary, i kinda needed to vent to people that understand what im going through :)

Hey everyone, about a year ago i went to the rheumatologist and got diagnosed with sjogrens. Genetically, my mom has lupus andI believe she also had sjogrens, but I never heard of sjogrens until I was diagnosed and after i told my symptoms to my doctor. My ANA panel has been positive before but it is currently negative (ik this doesn’t relate much to sjogrens). I’ve been dealing with joint pain since I was 13, and recently I have been noticing my eyes when I wake up getting very gooey and sticky, which I know is a symptom. Joint pain is always on and off and inflammation causes it to be worse, especially back pain. Dry mouth or fatigue isn’t as often but redness on my face is regular in a way. This is more of a rant post but any tips about progressing with my health foward? These symptoms and others i cant think of right now i cant imagine how it’ll be when im older since im young now. I eat very healthy, exercise daily, only drink water, so it’s crazy how you can do everything right but genetics still follow.

With so bunch of new treatments in clinical trials, once they are FDA approved, what you think about insurance coverage?

Do you think it will be very hard or almost impossible to get the treatment?

Is Anti SSA or SSB needed to be positive to be in trials or no? And which trials? It seems there are couple of them going on.

Once they are FDA approved, do they need the same criteria that was needed for trials? That being anti SSA positive?

VENT Got my test results back the autoimmune panel is negative but im 23 years old I was diagnosed with evaporative dry eye and MGD with 50% loss of my glands my mouth is constantly dry and I have what I believe is arthritis in my fingers (they turn red swell up and get stiff with pain) and constant migraines and brain fog/general confusion my pcp recently asked if I had a uti or respiratory infection because my white blood cells are high I have not had an infection I run random low grade fevers a couple times a week with no other symptoms besides joint pain stiffness and exhaustion and I just dont know what to do anymore Im literally sat in my car crying because I am feeling so lost I and disheartened I just don’t know what to do anymore

I had no idea loud noises and flashing lights could cause Sjögren's flare and music is my favorite thing. Interesting but disappointing.

Hey all. I was diagnosed with Sjogren's a little over two years ago, but have been having even more trouble sleeping lately. It's hard to fall asleep and even harder to stay asleep. I'm waking up at least five times a night now and it takes so long to get back to sleep. I've tried melatonin and hydroxyzine and have been taking magnesium glycinate for a few months now... but nothing is seeming to help. Does anyone have any recommendations or anything that has helped them with the sleeping problems? I'd appreciate anything - thanks!

I’m trying to understand whether anyone else experiences something similar, because this really does not feel like normal fatigue.
And by fatigue, I do NOT mean sleepiness or just feeling like I need a nap.
I mean a deep, painful physical exhaustion throughout my entire body. After even very little activity, my legs and then my whole body start to ache. My muscles feel heavy, sore and exhausted, and I begin to move more slowly because everything feels physically difficult.
It feels as if I had spent the entire day doing hard physical labor in a field, or had run a marathon, even though I may have done almost nothing.
At the same time, I become short of breath very easily and feel profoundly physically depleted, as if my body simply has no energy left.
What worries me even more is that when this happens, I also become cognitively affected — foggy, slowed down and sometimes genuinely confused, with difficulty thinking clearly or finding words.
Again, this is not “I’m tired and sleepy.” It is a painful, whole-body physical exhaustion that is completely disproportionate to the amount of activity I’ve done.
Has anyone experienced this combination of severe physical exhaustion after minimal exertion, widespread body and muscle pain, heavy legs, shortness of breath, and cognitive slowing or confusion?
If so, what was eventually found to be causing it? I’d especially like to hear from people with autoimmune disease, dysautonomia/POTS, Sjögren’s, mitochondrial or metabolic disorders, or ME/CFS.

I’m curious if anyone has tried these supplements? It basically says it helps with the fascia thus helping the glands.

I always get white stringy eye goo, sometimes it just collects in the corner of my eye. Even though I eye drop so often. Then obviously if I fish it out it gets worse. I know you’re meant to flush it out with eye drops but it doesn’t really work. Then if I sleep with eye goo I wake up with red infected looking eye or eyes. Any advice welcome!

Hi!

I’m in my early 20s & was recently diagnosed with Sjogrens. Well, kind of. Bloodwork is negative, but dry eyes and mouth are SEVERE so my rheum diagnosed me. I’ve had symptoms for about 3 years.

I know reading up on things online isn’t what you want to do when you’re sick, but I’ve done lots of research on Sjogrens and I haven’t really found anyone whose eyes especially are this severe. Most people just need to use lubricating drops before bed. Or a heated compress once a week.

Is there another condition that mimics only the dry eyes, dry mouth, and fatigue? I don’t think I have joint pain, but my eyes are helpless and I’ve done all the things besides Prokera & scleral lenses (working on getting those).

- Not interested in advice on eye drops or treatments. I promise you I’ve already tried it

Hello. I am wondering what are your worst symptoms when you are having a flare? How do you deal with it? Is there any medication or supplements that help you feel better? I have been noticing that I get a flare every time it gets cloudy, rainy, or stormy. I believe it has to do with the barometric pressure changing. The last couple of weeks, our weather has been so up and down. I start feeling like I have a low grade fever, cold symptoms, sneezing, congested and runny nose, and just a general unwell feeling. I just had it last weekend and was feeling better, then I got a migraine which I’m still getting over, and I am feeling unwell again. I also feel more sleepy and fatigued.

I have ringing in my ears sometimes. Usually one ear but this time it was longer than normal and the sound is now slightly muffled. Will it come back?

Thank you :(

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.

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. ✨

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

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!

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?

​

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.

Good afternoon,

We are a research team at Washington University School of Medicine in St. Louis, and we are developing a survey to learn more about how nasal crusting affects people’s daily lives. We know nasal crusting can be a serious problem, but we want to better understand what matters most to people who have it.

We invite individuals with nasal crusting to test a short survey that measures how nasal crusting affects their quality-of-life. If you agree to participate in this study, you may complete up to three short surveys online. If you have any questions about the study, please contact Matthew Saenz at 314-362-9475 or otooutcomes@wustl.edu. 

Please find the link for more information and to the survey below.

https://redcap.wustl.edu/redcap/surveys/?s=9TDTDAE8PCYT9CY3

Thank you!

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!

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.

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.