I have overlapping connective tissue diseases my whole life (nothing too serious) but my Sjogrens seems to be there first one with a particular set of symptoms; too many to list but pretty much all of them. My question is about food. I stopped drinking wine about 6 months ago which is good anyway. I eat pretty clean mostly because I can't tolerate spicy food and dislike too much salt. But whats the deal with night shades? Do I cut them out and try reintroducing again one by one? Do I not bother? What about onions? Garlic? And my biggest question is do I really need to cut out my one morning cup of coffee? Also, do you exercise? I feel so weak and cannot stand for long. I hate walking (I suffer from POTS) I don't have time to play around with food. Sometimes I truly think you are what you eat but what can food do when you're already unwell? I'm most curious about garlic, onions, and my cup of coffee. Finally, is anyone here on AIP, paleo, vegan or anything else? How has it worked and how do you travel re food? Thanks for getting this far. Appreciate any feedback!!

I just got diagnosed. My main symptoms are very dry eyes, dry nose and dry, cracked and peeling cuticles.

The nose issue in particular makes me wake up every day already tired and feeling like I've got a cold. Makes it hard to get out of bed for work.

I use saline nasal sprays, and they work a bit, but I wondered if anyone had any other products they use? I'd been looking at steam inhalers, for example, but they're quite expensive. I can't use a humidifier because I rent my house and can't risk mould.

The other issue is that my cuticles crack and bleed a lot. I have various cuticle balms etc. but I'd have to apply them all day long to get any benefit, and I have to constantly wash my hands at work.

Fortunately, I've found a good eye ointment/drop regime. But has everyone else got dark purple shadows under their eyes? Does this go away with eye drop use? I look terrible.

Cross posted with r/askdocs.

40ish female.

I’ll wake up between 3-5 am vomiting and having diarrhea a few times a year. This has gone on for 5+ years and I live in fear.

When it happens it is violent and accompanied by the following symptoms: Chills without fever Delirious dreams Nausea Shakiness Pounding heart Sometimes my stomach muscles spasm Extreme lethargy

I generally have pain and tugging in my LLQ and a palpable bulge which could be unrelated.

Nothing come up on ultrasounds of my pelvis or abdomen.

I had a colonoscopy about 3 years ago that showed mild diverticulosis in the area.

I have a new small fibroid there and endometriosis resection and previous fibroid removal. I get ovarian cysts often.

I also have PBC and Sjogren’s and Hadhimoto's.

No allergies that came up on skin prick test.

There does not seem to be a pattern with what I ate the night before. Sometimes I had limited alcohol or a big meal. Not always.

Already gluten free and shellfish and raw meat free.

Despite all this I am generally healthy and active. These episodes put me out for days though.

Any ideas?

I’ve been undiagnosed for almost 5 years, and I’ve been miserable. So much pain. I barely leave my house. Does it get better when you have a diagnosis and get the right treatment?

I’m worried it wont get better. I’ve already had three wrong diagnoses (RA, PsA, Fibro) and was on a bunch of meds including Humira and Enbrel and nothing worked except steroids.

Hi everyone! I’m finally seeing a rheumatologist tomorrow for the first time after a long journey of multiple years being seen by multiple specialists and doctors. I was recently diagnosed as ANA positive and with Sjögren’s (confirmed via bloodwork and biopsy) and also deal with chronic pain, immune issues, anaphylaxis triggers, and a laundry list of other problems.

For those who’ve been through this: What do you wish you’d known before walking into your first appointment?

I’d love advice on:

• How to prioritize symptoms (there are so many).
• Questions that helped pinpoint a diagnosis or rule things out.
• How to handle it if the doctor downplays certain issues (like my chronic pain related to my lower back, joint pain, and fatigue).
• What tests or next steps I should mentally prepare for.

Here’s a brief summary of some of my health conditions and symptoms:

• ANA positive (speckled pattern).
• Immune-compromised (unknown cause).
• Chronic pain: Lower back, joints (knees, hips, hands).
• Chronic respiratory issues (frequent infections, bronchitis).
• Anaphylactic shock syndrome (multiple triggers, including meds and foods).

Feeling hopeful but anxious—thanks in advance for sharing your wisdom!

Hello all, I was just trying to see if I am alone in my symptoms or potentially should go to the doctor. For the last week or sore I have had sore throat that went away after a few hours in the morning. This is normal for me during the dry winter. However my sore throat has lasted all day today and throughout the weekend and I have started to hack up hard green phlegm. My snot is clear, and I do not cough or fever. Should I seek a doctors opinion or does anyone else have issues with dry respiratory during this time of year?

Hey everyone! So things are finally starting to add up for me

For the last 3 years I’ve been getting hit with what seem like flares of some sort. All at once I’ll get hit with fatigue (I can nap all day and still be tired), constant sticky eye discharge, and cloudy urine.

But even outside those flares I’ve been having problems with my salivary / submandibular glands under my chin swelling.

The only way they go down is through vigorous exercise or through Fasting.

For a long time I’ve thought it was MCAS due to all kind of weird food allergies / sensitivities after having Covid 3 times going back to 2020.

I’m on Levothyroxine for my hypothyroidism and my levels are normal but I’m seriously wondering if these could all be signs of Sjogren’s?

Anyone here with swollen tongue who has SFN?

I’m new to the eye drop game and searched through previous posts to see if anyone mentioned these but couldn’t find anything. My ophthalmologist has suggested that I use eye drops 3x per day and these seem like a pretty economical option. She also told me there has not been any evidence to suggest any one brand is better than the rest as long as they’re preservative free… thoughts??

Hi all, I've have numerous autoimmune conditions and awaiting a Rheumatologist appointment to figure out the bigger picture.

I noticed recently that I have one enlarged tonsil (no pain or anything) but I was wondering if this is common or what other autoimmune conditions could it be related to?

Hello all, I have an enlarged abnormal lymph node in my left armpit & the radiologist said it’s a high possibility of it being lymphoma. I’ve been trying my best to be as positive as a I can possibly be but I can’t help but to think oh no! What if I do have cancer? I have 3 sons & a husband who isn’t the most supportive. I’m also worried about the biopsy itself because I will be driving myself I can’t take anything for anxiety.

Has anyone else here had to go thru this?

So, my office is instituting their 100% in fhe office, no telework policy. While having telework days helped me schedule some doctor's appointments that I've now had to cancel, that's not even my biggest concern.

I have no immune system and I catch everything. For the past year I've been sick more days than I've been well (and yeah telework helped with that), but I'm going to be constatnly exposed now.

Our set up is this--my group has one office that was a single person office for our boss. We now have four desks shoved in there and we bump into each other and the furniture and the walls non-stop. We have six employees. So if you're counting--four desks, six employees. The boss is saying "I don't care, you'll have to share, figure it out." Last week one of our employees had flu, sneezing, coughing, everything. He wanted to have telework so not to expose others, but the boss said no, no telework for any reason ever. So he came in sick of course.

Yes, I am looking for another job, but it's really hard.

What are some suggestions for trying to stay well while stuffed in a sardine can with sick people?

I mean, part of me feels like they're trying to get rid me and my depression says I should save them the trouble and get rid of myself now. But you guys have a lot of resources and ideas. Is there anything that bolsters immunity.

I already quit taking my immune suppressant drugs to see if that helps. It's not a good solution long term, but I can't see any way around it for now.

hi everyone, I’ve posted before about puffy eyes and anything you can do to help them, but I didn’t really get much information on how to actually help yourself. Now I’m gonna ask the same question for puffy face. I feel like my face shape has completely changed in the last two years ever since my Sjogren’s was triggered. It’s really messing with self-esteem, along with the eyes inflammation, and along with my auto immune alopecia.

Please please please give me information on how you guys deal with the puffy face swollen glance, I need things that actually work, if nothing works well then I’m not sure what to do but I’m already on plaquenil for about 4 1/2 months. I also take enbrel for rheumatoid arthritis.

i look like a compeltley different person from 2 years ago. it’s really making me freak out and i’m really sad.

I have had Sjorgens for a couple years now. I do struggle with dry eyes, dry skin and can somewhat handle that.. but the physical pain is so unbearable to me. I have some arthritis in my spine as well and some bone spurs in my spine. I have scoliosis. I had x-rays last october, pushed for MRI but insurance denied it. For a bit of background I work in a warehouse, full time, 10 hour shifts, it can be very physically demanding but i cannot afford to leave since no one else pays as good right now. I take at least 6 ibuprofen a day and about 3 tylenols, hot showers everyday. I have seen rheumatologists and taken medication but stopped due to them not taking me seriously enough and telling me they were unsure what else they could do. The last one I went to kept me on Methocarbamol (for inflammation) which I have already been taking, and at first felt like it worked until I felt nothing. He refused a stronger muscle relaxer and downplayed me so much on my pain I actually never saw him again after. I was told it wasn’t that “bad” and it could be worse. I cry almost every other day from pain and leave early from work. I feel sharp pain in my shoulders and blades as well as shooting and burning pains, I feel it in my back and it used to hurt so bad in my legs. My hands will constantly get stiff and I crack them alot. I have also been to physical therapy, that was a joke. I had a doctor who was trying to help me, but she then retired. She always hoped it would work out for me. I just want to be on something for pain that can help me stop taking so much ibuprofen and tylenol everyday, and I feel like no one i’ve seen is taking me serious.

I’m asking if anyone has experienced anything similar and what steps they took, or any advice on steps I should take. I appreciate your time.

Highly recommend this book. Her and her 3 daughters have autoimmune diseases. It’s a good read. Got it on Amazon for under $7.

I feel so left alone cause no doc here in Germany even seems to know this disease. My gp thought it was barely an eye disease and when my ophthalmologist told them to get my anti-Ro and anti-La they didn’t even know how (if I was allowed to do sports before or eat, if they had to freeze it before getting it to the lab) and even the lab didn’t know bc they never checked for those antibodies.

My ophthalmologist thinks that now that the bloodwork is negative I cannot have Sjogren’s. They didn’t even check ANA, didn’t do the Schirmers test or the ocular staining test. For them it’s clear I don’t have it even though I tick a lot of the boxes. Even though I heard it isn’t uncommon for these labs to come back negative especially in young people (I’m 21).

I can’t go to a specialist as I’d need a referral for that here or I’d have to pay out of pocket which I can’t as a quite poor college student. And I wouldn’t even know if they’d knew Sjogren’s. I could schedule a sonogram with my ENT doc, but for the lip biopsy I’d again need a referral.

And is it even worth pursuing all of that if in the end it could turn out to be nothing or only my endometriosis + sicca? I feel so fatigued which could be endo ofc, but I’m on bc for that which actually made it a lot better. And the dryness could just be sicca. And the joint pain I have is really mild and occasional. Muscle soreness could maybe again come from endometriosis, idk. It’s just so frustrating…

I'm 22 and was just recently diagnosed, just waiting on my eye appointment to start hydroxychloroquine... I feel like my entire life has shifted. What are things I should look out for? Or expect from life with? Any lifestyle changes I can take? My rheumatologist is less than helpful and just wants me to start taking meds before we talk anything. I've already had a salivary gland removed and I'm having full body pain, so I don't even know what stage/phase/progression I'm in? Any experience would be helpful! ^-^

About me: I am prediagnosis, male, in UK. Got dry mouth, eyes, nose, urricaria and some joint pain.

Antibodies all negative (!). Started last winter. Cleared up. Now starting again this winter but more dryness.

I have raised bilirubin and low vitamin D. On supplements now. But doc doesn't think I need any imaging on liver as enzymes ok.

My questions: A few questions from a concerned newbie...

Does anyone get used to the dry mouth? Live normal and just manage it? Any success in preventing rampant tooth and gum decay over the long haul?

Should I start HCQ now even pre-diagnosis (private doc offered it)? To help slow the dryness?

How long does a typical flare last? Or is there no such thing?

What do you wish you knew at the start? And what are your biggest tips?

Sorry for the offload! Just an anxious guy!

Thanks.

Does anyone struggle with wound healing and skin infections? Small acne spots will crater into large open wounds that refuse to scab and heal properly.

Prediagnosis, investigating due to severe sicca sympotoms.

I have been diagnosed officially just 3 months ago, but i already feel that i have full body SFN. It progressed from one arm aching to kind of full body now in just 3 months.

I know SFN causes long term organ damage.

I am only 47. Previously active and healthy.

Can you please share POSITIVE stories in cases when your full body SFN didnt progress or caused other organ damage over long term!

I want to hear from someone who had this disease for a ling time and was actually to live active healthy life after Full body SFN symptoms.

I just got the call today to schedule my salivary gland biopsy and they are saying it will be general anesthesia and take 3-5 days for recovery. Has anyone else had to do general anesthesia for this procedure? I had thought it was just a local anesthetic in the lower lip.

Thanks in advance! Low key kind of freaking out because this seems excessive for a biopsy, but I do want answers so I’m inclined to go through with it.

Hello guys i dont think i have sjorgen but because of some damage in my past my larynx is often very dry and i cant speak loudly and clearly. I wonder if medications which people with sjorgen use would also work for my problem?

One of my annoying long term symptoms is weak nails. They bend and tear, and wearing nail polish makes them worse at this point. Does anyone have a nail strengthener that they like that will still let their nails breath?

I’m 49. Newly diagnosed. I don’t drink, don’t take many. Meds. Strict diet. I had a CT scan because of a bad fall and it showed Hepatic Steatosis. Spoke to my rheumy via portal and they said Sjogrens may be attacking the liver. Anyone going through this? Thanks!

Hi,

I'm a newbie & still trying to navigate the Sjogren's waters.

My dentist has said I need duraphat 500 & has emailed my GP to say this. GP has come back & said it's "not included in their prescribing formulary".

My dentist is private & it's £25 per prescription & then I need to buy the toothpaste - this is working out to be the most expensive tooth paste I've ever bought!

Is there something I'm missing or is it a "suck it up buttercup" situation & just be glad it's expensive tooth paste & not a filling!

Any ideas?

Located in the US.

Hi! My fiancée has sjogrens and she struggles to walk around and it has been getting worse. I know the one thing she would give anything to be able to do is go for a walk. There is an easy trail nearby that I’d love to take her to and surprise her with a walk this spring after the snow clears up and it’s still cool outside (she has pretty severe heat intolerance).

Do you guys recommend any good wheelchairs or walkers with seats that do okay on dirt paths?She knows she’s getting to the point that a wheelchair might be a good thing to have on hand, so I plan on getter in input one which one she likes the most and, if she is okay with it, I want to be able to save up and buy it for her so she doesn’t have to use a chunk of her HSA to pay for it since she uses it all up on prescriptions and such throughout the year anyway.

So yeah, do you guys have any recommendations on wheelchairs or walkers with seats? I think my max budget would be $500.

Any advice as to how to make the walk easier for her? I plan on packing a bag with extra waters and maybe some ice packs to help keep her cool as well as an umbrella if it’s sunny.

Thanks in advance.

I have been taking plaquenil for less than 3 weeks and have noticed week 3 i started having severe nausea to the point of vomiting and having to take anti-nausea medication to feel somewhat decent. I also have severe headaches.

Did anyone experience similar symptoms?

I feel awful most of the days now.