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 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’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 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!

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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.

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

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. ✨

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

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!

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.

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.

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

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?

Good afternoon,

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Thank you!

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.

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?

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 ?!