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.

(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!

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.

Hi everyone, just wanted to share my own experience here - hopefully able to provide some insights and also gain new ones.

Currently in my late 20sF (east asian/south east asian) and newly diagnosed, with strong positive SSA, positive SSB, positive ANA, 5mm Schimear's test and also slightly elevated globulin. My eyes and mouth also do feel a bit more dry lately in the past month or so, although I have no difficulties otherwise in terms of swallowing food, cavities, waking up with crusty eyes or using eye drops.

It first started out 3 years ago in my mid 20s with the dermatologist wanting to rule out any autoimmune issues due to my mild facial redness (rosacea) and some photosensitivity (forearm rashes under the sun without protection which was initially diagnosed as eczema).

From that initial testing, I had high ESR, positive ANA, followed by strong positive SSA but was negative for SSB, Schimear's test with no elevated globulins.

I also did not have any obvious symptoms - no dry eyes and eye drops needed although I did drink quite a bit of water (2-3L) if not I would get headaches but nothing out of the ordinary. Maybe some dry skin but nothing too extreme.

I was referred to the oral surgeon for a salivary biospy, but they deemed that I was in good condition with no dry mouth and cavities and thus did not recommend the procedure given that it was invasive.

I then decided to take a break for a year as it felt like I was going around in circles taking the same blood tests over and over again but with no clear answer. Recently I finally felt ready again and decided to redo the tests, and that's when I was diagnosed due to positive SSA, SSB and rising globulin levels. I was then referred to the ophthalmologist to check for my tear film which was mildly dry but not too abnormal, and also my ocular surface which I had mild Meibomian Gland Dysfunction and 5-6 seconds TBUT. I also did the Schimear test and had a result of 5mm and got prescribed eye drops and eye gels. Will be having a follow up with both the rheumatologist and ophthalmologist in another 6 month's time.

On a side note, not sure if this is related but I also recently became anemic and was told that I am iron deficient although my diet was not noticeably different, albeit my ferritin levels 3 years ago was on the lower end of the range but not abnormally low.

Wanted to also find out more from everyone here, especially those diagnosed young and with very mild symptoms how your experience is like, in terms of progression, or whether anything you did help, such as diet or lifestyle changes. I currently visit the dentist once every 6 months and will be starting on eye drops/gels. Will try to eat a more anti-inflammatory diet as well such as fish oil, berries, vegetables etc. although my diet has been mostly healthy so far as I do not smoke, drink alcohol, have sweetened beverages or am regularly have fried/processed food although I do consume some refined carbs and red meat.

Sorry for the lengthy post and thanks in advance!

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.

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.

Always used to bruising easily, so I never really thought much of it. About three and a half years ago, I started treatment for Sjögren's/MCTD with hydroxychloroquine and lately I've noticed the skin marks have gotten way worse. They're like bruises that just won't fade, my legs are totally covered in them, looking like I got into an accident or something.

I went to a dermatologist who mentioned the spots could be from the HCQ (my rheumatologist had already warned me this might happen). She also said that drug-induced pigmentation like this doesn't usually respond very well to skin lighteners/bleaching creams.

Has anyone else dealt with this?
Any success stories or positive experiences with these marks fading over time?

I went for a CT scan with contrast to check what was possibly a parathyroid nodule. It ends up that it is “most favored to be a thymic cyst” according to the ct results. Crazy because these types of things are usually only found by accident. My GP said these can be very hard to diagnose so I’m going to a head and neck surgeon on Tuesday to get a better idea of what’s going on. Sjogrens (I was diagnosed in 2018, along with Lupus) seems to come up quite a bit when I googled it so I’m just wondering if anyone has dealt with this before?

Located in the US and insurance wants to bill me out the ass for Miebo but it works soooo well.

Where are we ordering Miebo/EvoTears online to ship to the US? I’m coming up dead end after dead end 🥲

Has anyone experienced doing fine with pilocarpine (or having side effects that were tolerable), then suddenly not being able to tolerate it anymore?

I’ve been taking it for close to a year. I’ve had very minor, common side effects, like sweating. But otherwise it was very tolerable and seemed to be helping quite a bit.

This last month it’s like I’m taking a different medication. It’s giving me headaches, causing bad gi distress, and just making me feel like crap. I had some of my previous refill left over and took that and was fine. So theres definitely something going on.

I actually reached out to the manufacturer to see if anything had changed with excipient ingredients and they claim nothing is different.

Anyone else experienced something like this?

I've suffered with severe colon (nerve?) pain since my symptoms developed, right around the time I received my diagnosis in 2016. I'm fine, until food reaches my lower right abdomen (the cecum), and I can follow the pain throughout and to the lower left, to the bottom of the sigmoid.

I don't remember when I started plaquenil, but my rheumatologist took me off of it over a year ago, and everything seems to have gotten worse, especially the pain. I'm now on oxycodone a few times a day, bc I can't handle the pain level (8 or 9/10).

Not sure if it's related, but I now go 10-14 days, on average, until I "go". I also experience 'anismus', where I can't relax my sphincter muscles, to have a movement or even pass gas. When I do, it sounds like a high pitched squeak, like a trumpet.

My gp asked my rheumatologist to prescribe it again, but he refuses.

Has anyone had similar issues, and, if so, did plaquenil improve things?

Hello there,

For around 2 years since I got a really bad flu that took months to recover from, my nose and eyes stopped producing enough mucus. This has caused a lot of discomfort and even pain.

Anyway, I've noticed that I get olfactory hallucinations when my nose is not lubricated. It smells faintly like cigarettes when there is no logical explanation for the smell and no one else smells it.

This did rarely happen before the symptoms started, but now the smell always appears when my nose is bone dry without exception.

Does anyone else experience this?

Like two months ago my eye doctor sold me some eye drops that he recommended. They were like $20 so I didn't think much of it and since the doctor recommended it I also didn't think much of it.

I've started to notice that they make my eyes feel worse some days. I've tried other eye drops that I've used that another eye doctor in another city I lived in recommended and when I used those my eyes felt relief immediately.

So, is it possible that not all eye drops are created equally and could be making my eye dry worse?

Note: I don't know the brand of this specific eye drop my current eye doctor gave me. But the other ones I normally use are Refresh PF.

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!

Here’s something I’ve been curious about. Were you ever told you had the mumps as a child, and then years later received a Sjogren’s diagnosis?
Both mumps and Sjogren’s can cause swelling of the parotid glands, those salivary glands near your ears and jaw.
I’m wondering how many people have looked back after their Sjogren’s diagnosis and questioned whether what they experienced as a child was actually the mumps or possibly something else.
Of course, it very well could have been the mumps. I’m just curious whether anyone has ever questioned that childhood diagnosis.