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Sjögren's syndrome flair

Feb 09, 2016 9:58 PM

I just recently got diagnosed but my nose is getting sores inside and around the outside. My right knee been swollen over a week. My tongue is burning like if I drink a glass of lemonade. My Rhuematologist is an 1 1/2hr drive away. So I don't know if I need to go to the hospital or not.

Feb 10, 2016 7:40 AM

Painedlady, I'm so sorry that you are dealing with Sjrogens and that you are in such a horrendous flare up. Doctors think that I have Sjrogens and I've not been diagnosed yet. I do have very dry eyes, nose and mouth, I get bad sores and also when I drink or eat my mouth burns. I have a HUGE laundry list of other syndromes and diseases (autoimmune) and have a pain level of around 8 every day on my medications. I would put a call in to the doctor and let him/her know what you're dealing with and what the recommendation would be. I hope that you find resolution quickly and that your sores begin to heal and you get to feeling better. I know there are others here that gave Sjrogens (such as my very dear friend, Flappsylady) and she takes Planequil. It's given her some significant pain relief of her fibro and other benefits but she can certainly explain her situation better than I can. Sending gentle {{{Hugs}}} and prayers that you get this all sorted out. 💕🙏🏻🌻

Feb 10, 2016 8:56 AM

Thank you so much I did notify my Rhuematologist just waiting for her to respond.

Feb 12, 2016 12:06 AM

Sjogrens sucks! My doctor tells me all the time you need to start taking your meds your eyes are very dry. And when they are dry its like I've been in a dust storm with my eyelids held open. I feel your pain literally. I have frequent nose bleeds and every time I blow my nose it bleeds. Andno matter what I drink nothing seems to quench my thirst. Ask your doctor about plaquenil I think that's how you spell it a lot of my other friends have sworn by it you just have to get over the hump of getting use to it.

Feb 12, 2016 5:49 AM

Stefane, I just started the plaquenil this week, and trying to get passed the side effects right now. But they say it takes 3 to 6 months to really feel the benefits from it. I just got diagnosed with Sjögren's syndrome in January and now stuff make since. So far I'm blessed with the eyes the only thing was I couldn't wear contacts without my eyes being so dry and the contact feeling like a piece of plastic. Now yes I feel you on nothing quenches my thirst. And waking up in the morning and my mouth so dry my tongue sticks to the back of my teeth. My sinuses stay dry all the time and congested. Going back to using the netti pot but instead of the pot I use the squeeze bottle. I'm researching everyday so if any other symptoms pop up, I will know what to do. Thanks for responding, I love that I can talk to other people about health stuff and I'm not alone.

Feb 15, 2016 2:32 PM

I'm just catching up on old posts today. I was dx with Sjogrens last year, following a horrible oral rash of white splotchy tissue inside my cheek. It wasn't thrush so they biopsied and it came back Sjogrens. Now instead of the white splotchy tissue I get teeny tiny pinprick fiery red blisters all in my mouth. It starts with one and within 3-5 hours they are all over my cheeks, tongue & lips, tingling/stinging, burning and painful beyond belief, like liquid fire. These occur 24-48 hours ahead of the actual flare increase of fatigue, pain, and tingling in my body. Since I started the Plaquenil last May I had noticed less where flares as well as less fibromyalgia muscle & tender point pain. My daily avg pain dropped from a 6-7 to a 3-4, and sometimes it's as low as a 2. Sadly I just had a flare about 4 weeks ago, and I've got the blisters in my mouth again. Thankfully I have some lidocaine viscous solution from way back over a year ago and it helps reduce the pain for an hour or so. I wish you both well. Sjogrens it's a pain in more ways than one. But so far I'm dealing with it ok. Hugs!! 🙂💕🙏🌼

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