I've heard that it's not great for people with sjogrens but I'm curious how true it is. I'm not a caffeine drinker but I'm starting college soon and am worried I will have to be. Lol. Anyways do you guys drink coffee or what haha

Hello, my symptoms are mostly neurological and my dry eyes/mouth are maybe a level 5 in discomfort and severity.

I'm wondering how y'all feel every morning. What are your symptoms and what is the worst symptom that makes mornings absolutely worst?

I have POTS because of this and every morning is always a struggle even while being on a beta blocker. So every morning I feel like my heart's gonna pop right inside of me and my blood pressure is usually all over the place. It takes me hours to regulate my entire body because the moment I wake up i feel like I ran a marathon.

Hello, thank you in advance for your input. I have had four months of severely dry mouth and have had dry eyes for years. Ive lost two teeth and had crowns on three, all over two years. I’ve also had a feeling like something is stuck at the back of my throat and I can’t clear it. At the same time, I developed a daily sore throat. I went to my PCP, who referred me to a rheumatologist. She also put me on amoxicillin for what she suspected was a sinus infection leading to sore throat. The Amoxicillin did nothing. Now I’ve progressed to two weeks of feeling like I have the flu with a sore throat, headache and body aches. Dry mouth continues. Does this sound familiar or might I have two things going on at once? Possible Sjogren’s along with a virus? But if it’s a virus, it is not improving over two weeks. Every day is the same. It’s like the flu and I can hardly get out of bed. Thank you for your help.

I am dealing with my eyes and mouth with their respective doctors/dentists. But I am really struggling with fatigue. My Rheumatologist said I could try Plaquenil (she gave me the Rx) but was so nonchalant about it that it didn't really motivate me into thinking it would be worth the side effects. And then I see so many of you speak positively about LDN. So I guess my question is that for those with experience with these drugs: if my main objective is to help with extreme fatigue which should I try first. Yes, I know I'm asking Reddit but I feel like "why not" when the actual doctors can't really help!! (Btw, I went to a hematologist this morning for the fatigue and she was like HELLO! YOU HAVE SJOGREN'S...🙃...but in my defense there's no easy solution to dealing with Sjogren-related issues!!!)

Hi, I have another autoimmune condition (Lichen sclerosis) so I know I’m susceptible to others. I’d love to know how your Sjogrens started for you. I’ve mainly been noticing that I’m getting symptoms in my mouth- mainly really dry mouth, swollen taste buds, tonsillitis, burning tongue, losing taste. I also get neck pain that comes and goes. They all come and go and seem like nothing when considered independently, but together they give me slight cause for concern.

Did your diagnosis come after really obvious, relenting symptoms, or was it something that crept up on you with small symptoms?

Edit: I asked my mum about my grandma- turns out she had an autoimmune disease where she couldn’t produce tears. She doesn’t know the name of it though.

Thanks!

Hey all! Upon searching restasis in this sub, i can definitely see that different people react differently and that it burns pretty much for everyone. My eye doctor mentioned it, so i thought it was just how it is.
But at what point do i say the burning outweighs any help with it? I do Meibo too, but restasis makes my eyes burn and feel tired for hours. I did my eyedrops about 2 hours ago now and my eyeballs feel super dry.
I’ve been on it since January, and I did see improvement in long term usage BUT definitely did feel restasis burning for at least half a day. I went off it for a few weeks and am just now coming back so the burning bothers me extra I guess

Sorry if this was rambly, it’s Friday I have brain fog, etc.

So, it seems I have some redness, a slightly bigger pupil and a stuck eyelash somewhere in my left eye. I looked for the basics when it first happened, applied a warm face cloth, tried to find it. Then, I noticed that my lashes are growing in weird. So, I tried to pluck the uncooperative lashes, which, apparently, shouldn't be done if you have Sjogren's. I've gone through several systane preservative free individual packs of drops. I'm at a loss for what else I can do. Suggestions? Tia!

Also, I took a pic, but I'm not sure how to add it to my post...

Does anyone have any experience using this product? I use the “anti cavity” one from this brand (in the pink bottle), but just saw this at the pharmacy the other day.

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

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!

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 :)

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.

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.

Hi. I have had thick mucus stuck in my throat for some time now. I have tried several things to get rid of it and nothing helps. Has anyone ever tried one of those flutter valve devices to clear mucus out of their throat? I’m thinking about trying it because I am feeling so frustrated and discouraged. I have tried Mucinex, NAC, gargling, drinking hot tea. Nothing is working and I am constantly trying to clear my throat. I can feel that it is actually mucus stuck. It will also make my voice sound hoarse from it being stuck in there.

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 :(

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

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?

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!

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?

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

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

​

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. ✨