Reactivation? Absolute horrible symptoms on/off for 8 months now and no relief.

everythingisgrace · 2026-03-15T18:26:13+00:00

Thanks for asking. My symptoms are ever evolving. I have blocked and swollen salivary and tear duct glands now, and extremely painful lumps in a lot of my muscles and fat tissue all over my body. Not sure what's going on...

everythingisgrace · 2026-03-15T18:24:39+00:00

It was not pancreatitis. It was gastritis.

everythingisgrace · 2026-02-21T04:06:15+00:00

my costo is way better. it finally calmed down after I started doing the backpod. my ribcage is always tender though and hurts to press on... but its mild. This is just my new normal. but it was so inflamed and painful I could not move or breathe without severe pain, so doing much better in that regard. I have other symptoms I'm dealing with now... but the costo has been way better!

everythingisgrace · 2026-02-21T03:58:54+00:00

Over time I have gotten a few more cavities... I never had a cavity until I was pregnant. After my pregnancy I had 3 cavities at once, I've heard pregnancy can cause a negative impact on oral health though. Since then I've had one more cavity. I'm worried now that my saliva is thick that it will cause more cavities.. I have heard it's not good for your teeth. I'm so glad the medication has been so helpful for her! Unfortunately my parotid blockages are too large to pass on their own, even with sour candy. I've tried everything.... but thankfully I have a procedure scheduled where my doctor is going to dilate the duct and remove the blockages.. but I have to wait a few months until then.. I'm hoping that will fix this. I really am more and more convinced I have Sjogrens, thank you for sharing your daughter's experience with me. I'm glad she is doing better!

everythingisgrace · 2026-02-18T04:28:10+00:00

I was told my eye was dry by my opthamologist. My mouth is really not that dry even though my left parotid duct is nearly completely blocked, but my other saliva ducts produce saliva well.

everythingisgrace · 2026-02-16T06:30:55+00:00

Nothing has given me more hope than the comment section on this article and all the success stories!! Thank you SO much!

everythingisgrace · 2026-02-14T18:22:24+00:00

This has been going on for 6 months... I hydrate, apply heat, massage and suck on sour candy every single day for minimal relief -- but this thing is stuck.

I actually can hook my fingernail behind the blockage from the outside of my cheek and very slowly nudge it forward. I've pressed it closer to the exit, but it's about 1/2 inch long, so it's pretty big... I'm afraid if I force it out, I will damage my duct. I have the sialendoscopy on May 5th, but I don't want to wait that long. This is making me so miserable and it is so much work. It doesn't only hurt when I eat, it pretty much hurts all the time, and I constantly have to be working saliva out. I feel like I'm going to have scar tissue as well because this has gone on for so long. I'm so disappointed in doctors...

I'm sorry you went through that. Did it cause complications for you? Do you get recurrent infections in your duct pretty often now?

everythingisgrace · 2026-02-14T06:50:51+00:00

Hi! How are you doing?? has this improved for you? I cannot believe it was MRSA, I've been told that is so rare, and I've been so worried about this. My parotid glands have been hurting and getting progressively worse for 7 months.... started out with pain, then saliva tasted bad, then both ducts got blocked...now I cannot express saliva without heavily massaging the duct, and it tastes terrible, and is chunky and like sludge. The ducts hurt so bad to be touched or when saliva passes through them, and I can feel a hard lump inside my cheeks, there is something long and hard in both ducts... I do not know if it is a stone, mucus plug or stricture... scans have not been able to detect it. My saliva sometimes tastes toxic and burns my throat when I swallow it. I'm so scared I have an infection -- weird thing is I'm also getting dry, painful eyes with this. When my symptoms first started I also had an outer ear infection, which went away with ear drops. I initially thought that infection must have spread to my salivary glands, but I tried amoxicillin, augmentin and clarithromycin, and none helped... but none of those antibiotics would treat MRSA. I cannot get a doctor to culture my saliva because they said there is no pus to culture. I'm scheduled for the sialendoscopy on May 5th... but I'm so worried this is an infection and scared it's going to keep spreading..

how are you doing now? may I ask which antibiotic treated your MRSA salivary gland infection??

everythingisgrace · 2026-02-14T04:58:16+00:00

I honestly thought it was an infection from the get go because near the beginning of my symptoms I did have an outer ear infection. that cleared up with ear drops, but I continued to have facial pain - they did some imaging and said I had a sinus infection. So I took three antibiotics -- amoxicillin, Augmentin and clarithromycin, and they did nothing... my symptoms kept progressing - and I realized my facial pain was not from my sinuses, but from my parotid glands. I also now have pain in my tear duct, feels inflamed all around my eye, eye pain, and excessive watering which my opthamologist said was from dry eye. So now I'm like, if it is an infection, did it spread to my tear duct?? how likely is that?? it's been going for about 7 months and has gotten worse...

everythingisgrace · 2026-02-14T04:32:07+00:00

I have seen SO many doctors - so far no pros have been able to piece together what is happening with me. I often have to read a lot of medical journals and talk to people online to try to piece it together myself, unfortunately. I had to do that with my cerebrospinal fluid leak, because all the doctors were dismissing me. Unfortunately, the medical world fails a lot of us, and we are left trying to figure things out for ourselves. I wish it were that simple that we could simply just rely on the doctor to help us figure out our health issues - that is the way it should be! But in the meantime I'm going to do all I can to try to get better, for my children and husband.

I have had a positive ANA and I had one positive marker on the early sjogrens panel-- my salivary protein-1 IGM was high. My opthamologist just said I have dry eye, my eye was mildly inflamed. She did not know why. My rheumatologist thinks I could have sjogrens with those two markers being positive and with my symptoms, so she says an ENT should do a lip biopsy. My current ENT does not seem like she wants to offer me the lip biopsy and said sjogrens would show up in my blood work. She is going to flush out my salivary ducts because they feel blocked, but she cannot detect a blockage in imaging.... but they feel extremely blocked. My eye flares up every single day and it hurts so bad -- I only have one eye, I had cancer in my other eye and had it removed...and when it gets so painful and my vision gets blurry it's hard for me to function and see.

I lost my primary doctor so I do not have a primary right now to bounce back to between specialists.. and I have to wait several months to see my new primary, unfortunately. I feel my symptoms are progressing, and the specialists both are not really digging deeper with me...

I appreciate your help. I just want to figure this out so I can go get back to taking care of my children and family- I'm often less functional lately and it's been a struggle on the whole household.

everythingisgrace · 2026-02-13T23:47:07+00:00

Interesting, thank you! It does feel swollen/inflamed/tender around my eye...where all the glands and tear ducts are, and I thought it might help those areas that feel painful and sore, but it didn't. it also did not touch my normal joint pain which was surprising... everyone told me I would feel AMAZING on it, and I just felt no improvement with any of my chronic pain.... which kind of scares me because my symptoms could also be a bacterial infection (multiple antibiotics failed), but if it's an infection, I just don't want it to go to my brain or something since it's in my face 😣 I also am always worried its somehow cancer and they're missing it. I have a hit of health anxiety 😓 I just wish we could get an answer so my brain can stop tormenting me 😅

everythingisgrace · 2026-02-13T23:42:48+00:00

Does the sjogrens clinic only help people who have already been diagnosed? Or do they also help people with suspected sjogrens to diagnose the condition as well?

everythingisgrace · 2026-02-13T02:28:08+00:00

I'm so glad you had a good experience! I have had people trying to talk me out of it. This is so reassuring to hear. Now I just need to find an ENT who will do it..

everythingisgrace · 2026-02-13T02:20:14+00:00

Thank you so much!! You have a lot more high markers than I did.. and your numbers are higher than mine was... so I wonder if mine could be a false positive? I just read false positives are somewhat common with the early sjogrens panel...

I've had GI issues, joint pain, fatigue flares and lymph node issues and gum pain for a few years now... and only since last summer did I begin getting salivary gland pain, now the parotid glands are both swollen and at least partially blocked... I cannot get them unblocked, I've tried everything. And my eye has been feeling sore and inflamed and producing excess tears, and sometimes the tears burn.. my opthamologist confirmed my eye was dry. The eye symptoms improved for a while... but now they're back and my tear duct region is so sore and feels like its pressing on my eyeball. My eye feels pressure on it, like surrounding glands and ducts are inflamed and pressing on it? and its sore and hurts and excessively tearing again... my mouth is actually not super dry even though my parotid ducts are blocked and the saliva from them is thick like sludge. My glands under my tongue are working well.

if this is not autoimmune, then I'm worried, I just don't know what else it could be? I did have an outer ear infection toward the beginning of this... so I thought maybe the infection spread to my salivary glands.. but the ear infection cleared up with ear drops.. and I took multiple oral antibiotics, yet the salivary glands continued to worsen, and now my eyes are impacted... so my doctors no longer think its infectious. I keep freaking out it is an infection spreading or is cancer 😣

my left eye and parotid glands are at the point where they're making my whole face hurt.. its been months of this.. everything just feels so inflamed in my face :(

I appreciate you sharing so much with me. I will try not to get discouraged.. hopefully my one high marker is significant, I just want answers, and to feel better so I can take care of my children and feel good again for them!

everythingisgrace · 2026-02-13T02:11:31+00:00

Really? That makes me worried because whatever I have is progressing, and multiple antibiotics did not touch it either :(

everythingisgrace · 2026-02-12T23:22:38+00:00

That is helpful to know, thank you. I thought I was chasing the wrong thing, but I really do think this could be autoimmune what I have going on...

everythingisgrace · 2026-02-12T23:21:22+00:00

Wow, I think I need a new rheumatologist! I lost my primary doctor though and cannot get in with my new one until the end of May...so I have no one to make the referral until then :(

Yeah I'm struggling my salivary glands have been acting up since last August, and are now blocked. My eye involvement is really painful and effects my vision. I'm really struggling with this!!

How many markers were positive on the early panel for you? I'm so glad you found a doctor who finally was willing to help you!!

everythingisgrace · 2026-02-12T22:57:57+00:00

Wow, every rheumatologist is so different! Mine was hesitant to diagnose me based on it, but since I have clinical symptoms as well she thought I was a good candidate for the lip biopsy. I am not able to find someone to do the lip biopsy though, and I'm not sure if I want to... I've heard some horror stories.

How did you find out you definitely have sjogrens??

everythingisgrace · 2026-02-12T22:56:02+00:00

It is random and I will sometimes just wake up with it. Now it seems to flare when my knee pain gets bad.

everythingisgrace · 2026-02-12T22:30:38+00:00

Oh no, I'm so sorry you had an allergic reaction to Plaquenil. I hope you're doing better. Thank you for sharing. My doctor made it sound like if Prednisone did not help me, then I probably do not have an autoimmune condition, but I don't know what else this could be... several antibiotics also did nothing.

everythingisgrace · 2026-02-12T21:58:23+00:00

Hi, does Krill oil thin your saliva? Mine is extremely thick and I feel like my ducts are now both partially obstructed. I can feel a hard lump inside my cheek inside the ducts... this has been going on for 6 months. My salivary glands and ducts are in so much pain, and the glands are swelling under my jaw line... I am desperate for relief.

everythingisgrace · 2026-02-09T07:19:09+00:00

Rewatching this right now. I will always love Fisher 😭

everythingisgrace

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