How does a flare-up present itself in Sjogren's syndrome?

Boy are we kindred spirits! I have identical symptoms and am home in bed with a flare up as I type this. I'm 52 and have had Sjogrens for over 20 years now. It's been a life changer for sure. Awaiting my rheumatology appointment so I can go back on Imuran. I won't take prednisone anymore. Nice to read about others like me, makes me feel less alone. Take care.

My flare up also starts quickly after a stressful moment or event. It seems sometimes that I can't be involved in any kind of emotionally charged situation or else I have a flare. The flare up usually starts in my mouth. My tongue becomes very sensitive and raw feeling. It's almost like I've burned it drinking a hot cup of coffee or something. If this last more than a couple of days, my entire mouth becomes inflamed with thrush ( yeast infection in the mouth). The extreme fatigue quickly sets in and my eyes swell. If it gets really bad, I will sleep the better part of two days straight. Luckily my husband is very understanding and helpful during these times, as I become very unavailable. This is a difficult syndrome to explain to others as it is always defined by, 'dry mouth - dry eyes. Unfortunately, there is so much more to it. I was first diagnosed while looking for and answer to my aching body, unrelenting fatigue and muscle weakness. This had gotten so bad that I lost my ability to walk without assistance for almost 2 years. I am back walking again and riding my bike but when I start going through the whole fatigue thing, I get wobbly in my walking. So that's my, 'flare up' with Sjogrens bio.

Going through similar flares that started 3 months ago. Encouraging to see you are able to walk freely at times and even ride your bike again. Thank you.

To me it sounds like you have a bacterial infection. Maybe caught at a hospital or who knows where. I would test with a simple urine test to see if,you have any hidden things going on. What you explain sounds sorta like myself last,year. I treated and now I'm recovered.  ***this post is edited by moderator *** *** web addresses not allowed*** Please read our Terms of Use

I have had Sjogren's since the age of 20 - I am now almost 50 In my 20's I was hospitalized 4 times with severe flareups - vomiting, migraine, nausea, strange feeling of a sore scalp - sore throat - - aching body - the first two times I had an enlarged - golf ball sized parotid gland - Every time it happened I was in a different city - doctors would never believe me that it was Sjogren's - I would be labelled a difficult patient - I knew what was wrong - that I needed prednisone rather than antibiotics but every time it was a big fight with doctors - they always thought it was an infection On one occasion the rheumatologist who diagnosed me and is a saint - (I now live in a different city so can't go to her anymore) came to the hospital I was at - not the one where she was working - and gave them orders - after they gave me prednisone it was like putting air into a blow up doll - I came back to life - Each time it happened I was actually not sure I would survive - and almost didn't care I felt so sick - Another time - a friend who was helping take care of me at the hospital somehow got the rheumatologist to call the hospital in London and explain to them over the phone what I needed - - Again, with prednisone I came back to life like a blow up doll - though the doctors were always unhappy at being told what to do I have often thought one severe flare up came after I had an abortion and another came after I was exposed to mold It has now been 20 years since I had that kind of severe attack Since I have been in my 40's I get mini flares that keep me in bed for 2 - 4 days - symptoms are the same - fever, headache, joint pain - but I seem to be able to control them with a high dose of coated aspirin An interesting side note is that I got a mini flareup after getting a deep tissue message, and also one after taking a Bar Method class - Bar is a type of fitness class where you isolate certain muscles and work them until the muscles begin to shake I am currently on a remote island off the coast of Eastern Canada I just got out of the hospital after another incident where the symptoms were exactly like a Sjogren's Flare - severe headache, nausea, vomiting, fever,.... I did have a UTI leading up to becoming sick - and apparently it spread into my kidneys - then out of the blue the doctor said I also had pneumonia - I was in the hospital for a week - I have now been out for two - but feeling terrible - crazy fatigue and a feeling of strain in my chest - I had a second X Ray and apparently everything is looking good - no trace of pneumonia and blood work looks good - though they are not testing for Sjogren's stuff - This time I think I really did have the two infections because the antibiotics cleared things up - but I just still feel that something is wrong - The doctor said I should be feeling fine now - his only advice was to eat more - which seems lame and patronizing - - but I do think I need to rest a lot Wondering if I should contact my rheumatologist in Vancouver to see if Plaquenil would help - There are only two doctors on this island and they have never heard of Sjogren's My new rheumatologist is trying to learn but has never witnessed a flare-up like the ones I get so I feel like there is no one who understands except a few friends who have witnessed it I am also going through menopause and wondering if that is making things worse - not sure how hormonal changes affect Sjogren's but would be interested to find out Anyway - just wanted to put my story out there. I feel I know my body - it's frustrating to have an experience with an authoritative doctor who does not know or want to listen - I have tried both Salagen and Plaquenil in the past year - but - Salagen did not help much though I am going to continue trying it - and Plaquenil I only tried for a couple of months and didn't experience a difference- but then encountered some severe stomach problems so went off - though maybe I should give it another try - stomach issues have cleared up - I would just prefer to do other things and save medications for when I am older and have no choice - I see a Naturopath who helps with diet, acupuncture and homeopathic medications But here on this island there are options for other people to see. One last note - I recently had to have my front tooth pulled out - something rare called resorption - my teeth are generally a mess after living with Sjogren's for almost 30 years - Resorption also sounds like an auto immune thing - your cells attack your gums - my doctor said its like your tooth eating itself - The process to prepare for an implant with the bone graft etc also has taken it's toll

I have SS. And it sucks. The fatigue and brain fog. Pain in legs and back feels like i have the flu. But jusr a flare up!!

I have had the same miserable symptoms. Tough road to hoe is right.

That parotid gland pain and swelling your neck like a bullfrog at first, then doctoring with bouts for 6 yrs, then incredible large joint pain and crippling fatigue was what got me an appt with the #1 rheumatologist in Philadelphia, who also was responsible for having Sjogrens entered into the SSDI list of disabling diseases.

Sulfa drugs can cause flares in lupus, so I would think that it can activate the immune system in the same way for sjogren's.

Cpetitte, you sound so much like what I am going through. You are on my mind since reading your posts. I will pray for you.