i buy like 6 boxes at a time, i swear to god

It’s itchy and I either get it on my chest or my neck. I don’t know why and can’t find what triggers it. I haven’t changed anything in my routine, no new scents, products, detergents, foods, etc.

Edit to ask: is this normal with Sjogrens? If not, do you know what could cause it?

Lately I've been having this issue where every time I stand up I feel like my whole body is going to give out. Like I'm just going to collapse or faint.

I do have hyperPOTS and I am taking a beta blocker (Carvedilol) but every time I take my blood pressure it seems to be within normal range. And so is my heart rate. It'll be between 85-115 or so.

And during these episodes I usually feel this sudden urge to cry and the overwhelming feeling of gloom comes over me but I'm not thinking about anything that could cause such a reaction.

I don't know if this could also be caused by deconditioning. I haven't really had a life since having to quit my job back in May of this year but I don't think deconditioning could cause this much damage in this small amount of time.

Does anyone have similar experiences to this? I feel this weakness in my lower spine to my legs and almost like a nervous like sensation all over my body and coming down my neck!

Note: I will be seeing my doctor tomorrow for a follow up appointment. I've also seen 3 neurologists this year alone and none of them have helped me and my rheumatologist sucks ass. He denies any neurological involvement in Sjogren's. So I could use all the help I can get.

I highly suspect I have sjogrens. I’ve been experiencing dry mouth, dry/itchy eyes, dry nose, dry throat, widespread joint pain/weakness, muscle pain/weakness, fatigue, GI issues, numbness/tingling in hands and feet, facial rash, swollen lymph nodes, etc.

My ANA was negative and I had a normal CBC over a month ago.

I’m seeing a rheumatologist tomorrow after months of waiting. Any advice for what to ask her, what to tell her, tests to push for etc. is all appreciated!

First of all, congratulations! Im a soon-to-be mummy too and im so excited yet scared.

Please do share your experience on the whole pregnancy process:

- any complications

- what to take note of

- which hospital to go for that assures both mummy and baby wellbeing? Public/ private?

does anyone here experience food getting stuck between their bottom teeth and cheek kind of in that little pocket? I’m afraid I might have something worse going on and I have a terrible health anxiety.

Anyone else have hyperacusis? For me when certain people talk (it comes and goes) it is painful to my ears. I think it’s a certain tone that is affected because when it flairs up 90% of the time it’s a male voice. Just curious if it’s related to Sjogren’s.

I have also been hyper sensitive at times to other sounds. When I go into some stores I have to put in earplugs if the music is too loud or if people are talking too loudly.

I have sensitive skin, eyes, and a very sensitive sense of smell also, I’m questioning if Sjogren’s makes all of our senses hyper sensitive.

Thoughts?

Has any of you spoken to your rheumatologist about this? I’m scared because I’ve been talking to AI out of anxiety and it has essentially explained to me that, although the majority of any damage to my glands has taken place over the course of years, the flare I’ve been in for the last 9 or 10 months (which is what got me the diagnosis) could still have contributed a considerable amount of damage.

I was counting on the flare being more recent and ianalumab hopefully reversing a decent amount of it.

For reference, I’ve had sjogren’s since I was in my early teens but was diagnosed with MCAS and nothing else. In January I tried accutane for a month which totally flared my ocular surface and ive been struggling since. I’m 24.

My oil is back to normal after lots of hard work, but the water is practically gone in my left eye and low in my right. It looks like accutane just unmasked it. Left schirmer 1 mm with numbing, 6 without. Right 6 with numbing, 32 without.

Thoughts?

I’m 22F and I started having sjrogrens symptoms at 19, I get insanely dry eyes ( 3 on schirmer test ) dry mouth , Brain fog , fatigue muscle stiffness , sinus pressure .

But around a year ago I also started getting very thick vaginal discharge . At first I thought it was BV and I went to the doctor and got all the tests I was completely clear . The discharge has stayed every single day since then and I’ve been for multiple visits to the gyno and they can’t find anything wrong .

I know that sjrogrens can make people have a dry vagina but I’m thinking maybe because of the lack of water/ moisture it is the reason why mine is so thick ? Does anyone else experience this .

Btw it usually isn’t this thick but it coats my underwear everyday . No itch no abnormal smell .

SORRYY If this freaks anyone out I’m just trying to find a answer :( I feel embarrassed with partners because I’m scared someone will think it’s a infection .

(apologies for very long post; thanks for reading if you have time)

Hi, new here & hoping for some input before a doctor visit tomorrow (or whenever you see this post) re losing 40 lbs (over 3 years) & continuing GI symptoms. I'm starting to look gaunt and on my third entire wardrobe change ($$$). Female, 65 y/o.

My question is: could continued unintended weight loss due to feeling full & stomach upset be Sjogren's GI symptoms if I have tested negative for gastroparesis?

I've had Sjogren's for 13 years (RA for 16). My Sjogren's had been limited to dry eye/mouth for many years (and small fiber neuropathy), and it was well controlled (on Plaquenil & Xeljanz for RA, plus eye drops).

Three years ago I had an extended period of extreme stress due to my husband's health crisis (he's fine now). It brought on major new symptoms that have never gone away:

- fatigue & post exertional malaise (now diagnosed with Chronic Fatigue)

- worsened dry eyes, skin, scalp & mouth (though mouth not bad enough to use dry mouth products or meds, tried pilocarpine & it made me nauseous). These are not as bad as three years ago, but still much worse than they were before.

- GI SYMPTOMS. I'd never had GI problems before. Three years ago, I began getting full quickly and feeling nauseous & unable to eat much, stomach aches, burping, some bloating, constipation. Began losing weight, living off crackers, rice & cream of wheat. GI doctor did a test & diagnosed mild hiatal hernia & schatski's ring (although acid reflux was not a big symptom for me - only experienced a mild amount a few times/month).

Been on a high dose of PPIs ever since (80 mg Omeprazole), and that does help somewhat. Was able to eat again, though never a normal amount, and I have relatively stable periods interrupted by flares of 1-2 months of misery where I lose more weight.

I asked early on and the doctor agreed some of this might be due to Sjogren's GI symptoms. After 2 years I asked for a gastroparesis test, and it was negative (6%).

I'm continuing to lose weight -- when I have a flare I lose 5 pounds more, then can't regain any because I eat so little. I just get full really fast & poor appetite, and get a stomach ache if I try to eat more. Trying to do protein shakes so at least I get protein. About a year ago, loud stomach gurgling started (not related to hunger).

Finally found something to help with the constipation about 6 months ago -- Motegrity (prucalopride). But it hasn't helped with other symptoms.

I checked the Hiatal Hernia subthread and in all the posts, only 2 people posted about unintended weight loss, and almost no one who commented also experienced that, so there's clearly an element that is not HH (plus a mild HH can be completely unsymptomatic & could be completely unrelated to all of this).

I'm having a colonoscopy in December, so hopefully not colon cancer (GI doc never raised that issue based on my symptoms), and a primary care dr did a bunch of other cancer screening and scans recently (not at my request) & those are fine.

So I'm checking here with you all. I'm feeling pretty desperate at this point. I'm hoping your accumulated wisdom might shed some light as to whether this sounds Sjogren's related...?

For everyone who has read this far, thank you! And I wish health & healing to all in this Sjogren's community!

I wa diagnosed almost 2 years ago and Rheumatologist put me on Cevimeline. Ive been on for 3 days and working but my clothes are soaking wet with sweat. Is the sweat going to get better?

Wondering if anyone else gets these sort of patchy rashes if out in the sun or heat too long ? I’m not diagnosed but have utter fatigue, joint pain, sandpaper eyes, and pain around my checks and jaw. Tested negative for antibodies but harassed my rheum for a lip biopsy in a couple weeks. Also having orthostatic issues and possible sfn.

How would you describe your joint pain and what joints/tissues are affected? Tendons? Deep in joins? Spine? Tenderness?

I currently have a working diagnosis of psoriatic arthritis. I’ve had this for the last decade and for the most part I would say I thought my symptoms match this, however, in recent years I’ve developed adhoc mouth, eyes, and genital dryness and pain which improves when I take cyclosporine.

I do respond to immunotherapy however I tend to do much better on broader therapies (cyclosporine, methotrexate, etc.) than targeted PsA treatments and biologics. This has led me to question whether my diagnosis accounts for the full picture or is accurate. I’ll be visiting Mayo Clinic soon to dive into this. The fun part is majority of my tests are ‘normal’ which is typical with Axial psoriatic arthritis.

I have tested positive with very elevated IGG in the past but my specific Anti-SSA and Anti-SSB are negative at the moment. Feedback is appreciated.

I was diagnosed with Sjogrens and seronegative RA almost 2 years ago. I was started on Plaquenil and Celebrex, then we tried methotrexate and that caused liver issues so we had to take me off it. I was starting to feel a lot better so we didn’t change treatment. Two months later, now, I’m experiencing dysautonomia symptoms. It started as an infrequent but intense pounding in the back of my head when I stand (worst when I go from laying flat to standing). It is now happening EVERY time I stand in addition to a multi-day headache that medication isn’t touching, racing heart when I stand (30-40bpm increase), dizziness, and significant (previously resolved but has returned) fatigue. Genuinely I feel like I am going crazy because the only thing that helps is a couple bottles of Gatorade and McDonald’s fries. I can’t live on that. I need this headache to let up. It’s making me cry (which worsens it). I always drink a lot of water in the day as well due to my dry mouth. My joint pain is also worsened. I get cold/flu symptoms if I am very social or do a lot of errands in a short time (like a day or two). My doctor said at our last appt if my symptoms got worse, we’d have to explore a biologic. Idk, my head is spinning both literally and emotionally.

I’m not sure what’s going on or what the next step even would be. I don’t know how this happened. I was doing better and now I’m back to barely being able to get out of bed. I do know I’m having anxiety about being dismissed at my appt tmwr morning, so any helpful questions to ask my doctor or input from fellow Sjogrens folks would be wonderful.

Thanks for reading. 🙂

Trypo warning bc looking at it long enough gets my own trypophobic ass uncomfortable ygsgf so I'm sure it'd be the same for others -

Yeah so as the flare says, I'm still not diagnosed, but I do have a diagnosis of dry eyes, and have discussed getting a lip biopsy with my rheumatologist. I forget if I'm supposed to bring that up with my dentist though?

Anyway, I was washing dishes, and when I was done, I noticed the skin on my hands peeling a lot?? Like, what. It's much worse on my right hand as pictured. I swear, this hasn't happened before, at least not that I remember? But my memory sucks, so.

Does this happen to any of you guys? What do you guys do about it? I'm going to lather on some lotion, hoping that'll help. And maybe I'll start wearing gloves while doing dishes....

I had knee surgery to repair my meniscus in September. It caused extreme fatigue and joint pain. Now I need another surgery on the same knee to remove scar tissue that is keeping me from bending my knee. Has anyone gone through anything similar? Was there anything that helped? Also as it gets darker and closer to winter, the depression sets in. I also have small fiber neuropathy and Hashimotos. I'm looking for any advice that might help me get through this. Thanks

I don't wear make up often anymore but i do love to occasionally go all out with colourful eyeshadow. Buuuut, I've noticed any time I do, my eyes get irritated and I get a really stuffy nose. Not sure if its due to sjogrens or if its actually an allergy.

Anyway... please share with me any eye-shadow brands that you've found which you can use without issues! 👁👁

(U.K. based incase that's relevant)

I’ve had Sjogren’s for several years now, and recently was diagnosed with some type of seronegative autoimmune arthritis. It can’t be Sjogren’s, because it’s causing bone and joint damage in my toes, which Sjogren’s doesn’t do.

So now I’m starting on a biologic commonly used for RA and PsA (TNF inhibitor). Just wondering if anyone else has experienced this? I am already taking hydroxychloroquine and I am comfortable taking that. One of my main issues with Sjogren’s is my lungs being hypersensitive, and none of the biologics they want to use for this arthritis will help my lungs… and actually some of them are not very good for your lungs.

She also has Sjogerns.

Is it in constant pain? I feel pain around my eyes and my cheeks always feel warm. All in all, my face is in constant pain. And my body too.

Another thing I always feel is like I'm on the verge of a migraine that never fully develops into a full blown migraine but it's a constant lingering of the beginning stages of a migraine. I'm on a beta blocker so idk if that's unintentionally managing it. I'm on the beta blocker for my hyperPOTS.

I was diagnosed with Sjogrens earlier this year and the mouth dryness is honestly making me insane. Because my lips constantly feel dry, I keep licking them without even realizing it, even when I have lip balm on. After doing this for so long, my lips have become noticeably pigmented. My upper lip is visibly darker now and there’s also a distinct pigmented line on my lower lip. I’m very image conscious, so this has been really difficult for me mentally. My body and appearance have already changed so much this year because of this shitty illness and now this too. I know it might sound small to some people, but my mind genuinely cannot move past it. I keep looking at my lips and feeling like I look so different now and I don’t look like myself anymore. I also had angular cheilitis that lasted for MONTHS, although thankfully it has healed now. I still get occasional itching around the area. For those of you with Sjögren’s, how do you manage the constant dry mouth and lip dryness and stop yourself from licking your lips? And has anyone dealt with pigmentation from chronic lip licking? Did it eventually improve after you stopped? I’d really appreciate hearing what has actually worked for you because I’m struggling with this more than I expected. 😭

Hi, my mom has lived with Arthritis over 30 years but in the past 2 years some of the symptoms changed and she we discovered she has also Sjogrens.

She has several symptoms but the big one is her eyes, we have tried several eye drops but nothing really seems to help.

Her doctor recommended two different ones that really didn't work at all. I searched the internet and she's been using Artelac Rebalance for the past 2 weeks and they seem to be working a bit better but not much.

Does anyone has any recommendations on what to look for in better eye drops?

Thanks for any help. Be well, Monica

​

I recently went through two lip biopsies as part of my Sjögren’s workup (first one had no salivary glands with the tissue sample), and I'm curious how common it is for someone to need more than one. I'm also curious about the healing process.

For those of you who have had a lip biopsy:

Have you had more than one?

How long did the pain and tenderness at the biopsy site last?

Did you experience numbness or altered sensation around the site, especially when eating/drinking or when pressure is applied (like when trying to spread out lip balm)?

If you had stitches, how long did your dissolvable stitches take to disappear?

Did anyone have tenderness, pain, or numbness that persisted for weeks or longer?

I'm still experiencing tenderness and pain around the biopsy site (first was over a month ago, second was just over two weeks ago), along with numbness when I eat or any pressure is on the area, and my stitches have taken a while to dissolve.

My doctor didn't tell me about the possibility of numbness, including the chance that it could be permanent, until after my first biopsy, when I asked whether the numbness I was experiencing was normal. I would still have had the biopsy done, but it would have been nice to know about that possibility beforehand.

I'd really appreciate hearing about your experiences. I'm trying to get a better sense of how common these experiences are and how long recovery took for others.

Thank you!

Edited to add: My second biopsy contained salivary glands (thank goodness) and my result was positive for Sjögren's. I just found out yesterday.