r/Sjogrens

What are some triggers for your body aches and muscle fatigue, or joint pain from Sjogrens? Please don’t comment things like “just existing”, hoping to help find the cause of some of my flares!!

19M with Sjogren's symptoms currently going through the diagnosis process and I'm struggling to find any hope or reason to keep going on with any of this.

These past two and a bit months since my symptoms started have shattered me mentally to the point it's the only thing I can think about. I cannot go a minute without these symptoms looming over my head, I don't get a moment of true relaxation and joy without getting reminded that my body isn't working as it should for some reason.

Before this I was a completely healthy 19 year old, I was more active than most my age id say, I actively strength trained and did other activities like long distance hiking and rock climbing, while eating pretty well. I always assumed my body would cooperate and work, that even as I got older it could be managed with determination and healthy choices. When I tore my AC joint while benching I began to feel a bit depressed, since I was physically unable to do any upper body training for a while, but I knew that eventually it would get better, and I would be back to full strength even if it took a while. This feels different, however, its the first time in my life where I've faced something with so much uncertainty, I'm so used to pushing through challenges because I know they're temporary and that there's light at the end of the tunnel. Whether it was exams or breakups or anything else I'd done it before and knew I could do it again, and at 19, I have ages to build up the life I want and the only thing stopping that from happening was me.

These symptoms work against you every step of the way, just to make every aspect of every moment of your life hell it feels like a biblical punishment to be continuously dry in every part of the body worse still it's not given that much attention by the medical community. I feel like even one of the symptoms of Sjogren's like dry eye is enough to drastically reduce QoL, however when paired with everything else like joint pain fatigue and dry mouth it just becomes overwhelming.

It's something I also don't like to admit but it feels very emasculating to experience these symptoms. I enjoyed being able to push myself physically, and see results which was something so satisfying whether its a better physique or just beating a personal milestone. I know it seems weird but it was a part of my identity and how I viewed myself, now it feels like the person I was is dead.

The majority of people who get this disease, as well as on the support groups are ladies who are twice my age, and no offence to them but it makes me feel like this is a moral failure on my own behalf. I managed to end up with something that statistically just shouldn't happen in this demographic. Maybe if I slept more or didn't spike cortisol over university work and career building this would not have happened but now its too late.

I've met one other guy around my age with this disease on here and he also seems to be struggling with a lot of the same feelings so I know it's not only me and I'm really thankful we met each other but in real life nobody relates, life goes on regardless and doesn't stop for anything.

For me Sjogren's is an ugly aspect of the human experience, its something that had I seen before I'd honestly express sadness that people have to go through it and hope a cure was found, but ultimately assume it couldn't happen to me. I'm still in disbelief that I even have to contend with it, part of me doesn't believe it. I know life isn't fair but something like this was not on the radar at all for me since I've never struggled with anything health related at all bar a few injuries. I remember being so excited for this summer, I had planned to travel around in the sun and explore the countryside with my mates, on top of getting a place on a dream internship I thought I'd finally got a foot onto the career ladder and was so excited. Now I look back and it's been two months of torment both physical and mental.

I apologise if its just a vent post, it's just what I've been going through. I'd be happy to hear if anyone experienced similar, especially if you are young or dealt with this at an age similar. Please feel free to DM if you want to talk or ask anything.

Some days can be AWFUL for dry eyes and mouth, other days I barely think about it, why is this? Are there triggers?

Does anybody have gastritis with their sjogrens if so how do they treat it. I find if i dont take 30mg of PPI omaprazole, i get these awful hunger gnawing pains. Any help advice be apprecriated. My doctors are useless.

I'm suspecting SFN because the more I researched it the more everything makes sense. I know for a fact I have hyperPOTS but the cardiologist only diagnosed POTS.

I tested positive for SSA and I am still waiting on lip biopsy and the blood work that the rheumatologist did because my primary doctor did my first autoimmune panel. But I don't see the rheumatologist until October 12 🫠

I've gotten worse over the last few months and I can't tolerate anything anymore. Migraines back to back. Constant stabbing pain in my head and other neurological issues. My POTS has significantly gotten worse too.

I'm on Carvedilol per the cardiologists recommendation. But that's only touching the tip of the iceberg. I feel like I'm still in constant fight or flight mode and I am at my wits end. I don't know what to do anymore.

I'm hoping that someone here may have something similar to me symptom wise and tell me what I can do or suggest to my doctors. I'm set to see a THIRD neurologist this year because the last two have been absolute trash. Nobody has gotten to the root of the problem.

NO ONE! the rheumatologist is one of the only ones in my area and he flat out told me that Sjogren's doesn't affect the nervous system. Other folks on here told me to find another rheum but I'm south Texas and I can't travel from how sick I am. I also don't work currently so no money for travel either.

Hi Sjogren's people. I have a weird/complex history. Short version: I had rapid, severe onset of inflammatory joint disease in late 2023, affecting every joint except my jaw. I was seronegative for everything and got diagnosed with seronegative RA. Spent 2024 trialing and failing standard RA drugs until I got lung inflammation in late 2024 and got put on Rituximab. In late 2025, started developing skin involvement, mostly a malar rash and photosensitivity. Early this summer, photosensitivity and heat sensitivity became really extreme, malar rash became constant, my eyelids turned purple-y/grey, v sign rash on my chest, raynauds-y situation on my hands, weird capillaries in my nails, some vascular stuff. Saw an autoimmune dermatologist who said probably dermatomyositis or lupus, but I'm ANA negative; he ran a myosotis panel and the only thing that came up positive was Anti-SSA52 so now he says Sjogren's is the leading differential. I'm...perplexed? I don't have dry mouth, dry eyes, or dry anything. Nobody has ever mentioned Sjogren's to me. Does anyone have a similar history?

(I didn’t know what to flair this as.)

I need a toothpaste that has no xylitol or artificial colors or any mint flavor. I want to avoid artificial flavors also, but thats not as much of a requirement. I’m okay with fluoride. My dentist never has any specific recommendations. Any help would be appreciated. Ive been struggling with toothpaste for years because all of them make my dry mouth worse. (I avoid xylitol due to sensitivities to it.)

Thanks in advance.

Hi everyone,
I haven't seen a rheumatologist yet, but my functional doctor ran bloodwork for Sjögren’s and it came back positive. My symptoms (severe eye/nose/throat dryness and lack of sweat) a few years ago. After C o v i d I figured it was just a symptom from that.
I’m posting because I feel crazy trying to explain one specific symptom and hope someone recognizes it:

My throat and mouth are extremely dry, especially in the morning. Whenever I drink a glass of water or use a Neti pot in my nose it instantly triggers a thick, sticky, gooey saliva/phlegm film that comes up from my throat that I have to spit out when drinking or coming out of my nose when using a neti pot.

My theory is that my esophagus and throat are so dry that old, dehydrated saliva is stuck to the lining, and adding water "wakes it up" or rehydrates it into a gooey film that I have to spit out. Once I clear it, I'm fine, but it happens reliably every time I hydrate or rinse.

It’s almost as if my throat esophagus area and nasal cavity doesn’t get moisture until I put water is this sjorgen symptom?

Does anyone else experience this? Is this typical for Sjögren's?

Someone with negative antibodies but a positive biopsy and a very heavy burden of symptoms who is on treatment with IVIG or rituximab and is improving 🙏

I cant seem to find much about arava here for mctd/lupus. Switching from methotrexate after dealing with extreme itchiness from the shots. Any have any experience with this drug? Im definitely gonna do some googling for the side effects an what not but I feel like they don't anyways have the full picture or something close.

Good morning or aftwenoon well where do i start i been going to hell and back the past 7 months going on 8 trying to figuerw out whats wrong well all started with one day out of tge blue i had really bad dry throat in my right side that make difficulty swallowing evwn my saliva feel like it was so dry went to dr i had few test done swallowing, ct scan, ent did a nasal endoscopy, and eveeything cameback normal the only thing i found by a test i did my aelf i had hpylori wich i treated for 14 days, thank GOD thays gone but the gi dr put me on 40mg og esomeprazone i been on it for the past 30 days ifeel lil difference on my throat but not as much still feels dry and do to that i have difficulty swallowing solids or tgick stuff for the past 7 months did any one went to similiar symptoms or have any recomandations thank you

I hope someone can help me.. I have neurological symptoms such as SFN, POTS, Raynauds including almost no saliva. I have had multiple blood panels done and they’re all negative including SSA ANA SSB. My lip biopsy and ultra sound were both negative for sjogrens.

I have no inflammatory markers at all and the only abnormal finding I have found is low neutrophils and low wbc which is not common in seronegative sjogrens. I also took an early sjogrens panel with one positive marker and have had 3 rheums tell me that the test is not accurate. Where should I even go from here ? Is this even sjogrens at this point ?

I frequently get this odd feeling may be it's not a feeling maybe perception is a better word and i don't have the words to describe it to the doctor. It's not vertigo, the room doesn't spin. I am not off balance. Fuzzy is close but not close enough. The closest i can come to it is like looking underwater but that's not it either. It's not that "alice in wonderland" feeling either. But it is very disconcerting. Its mostly, but not always in the morning.

I’ve had progressive aqueous deficient dry eyes for around 8 months now since january.

Around July, i suddenly got new black floaters, and it has slowly increased. Right now in august they are still here. This isn’t a concern if Sjogrens causes this, but a quick google search shows that they aren’t linked.

I went to see an ophthalmologist yesterday and they performed slit lamp exam and also indirect ophthalmoscopy test (The doctor wears a headset with a bright light and holds a large, specialized lens close to your eye while asking me to look in multiple directions (up, down, left, right).

I think he was checking for retinal tears/detachments, but didn’t notify anything serious happening.

He told me floaters are caused by macular degeneration normally due to aging. But i’m 24…

Does Sjogrens cause sudden floaters? Any of you experienced similar when you first had symptoms?

I've had non-stop pain in the left side of my face. Rheum said it was probably from the swelling. But I also suffer from migraines and that has been absolute hell.

It's also gotten to the point where I lose vision. Not that my vision goes black but it's all so blurry.

I am on a beta blocker that was supposed to help with my POTS and also supposed to help with the migraines but idk it's doing anything for the migraines tbh. I had to go to the hospital the other day and they gave me a migraine cocktail and omg I had the best sleep ever and literally within the 24 hr mark it all came back swinging. And I've been in pain since. It gets worse when I'm stressed too. Numbing and tingling too.

I have Sjögren’s syndrome. I have had pain in my urethra every time I urinate for the past two years. About a year ago, I also started experiencing abdominal pain. I have pain in my lower back and gluteal region as well. On the front side of my forearms, a red rash occasionally appears and then disappears within a few minutes. My mouth is dry, and my nails grow slowly and tend to peel/split.

I've never had issues with my teeth but wake up with the most dry mouth every time I sleep now. No matter how much I drink in the night as well. It's bearable I just worry about my teeth health. Will they be okay? Thank you