Sjogren's Syndrome Support Group

wow bad spelling--That second question should read "Could some of the little..."

There are some days when I barely have any symptoms and some days like today when I feel them all. But when I was first wondering what was going on it was like one day I would have one thing and then the next I would have something else and then the next something else and then I would wake up and feel fine. My symptoms though were never about my eyes or mouth being dry but it was fatigue and joint pain, stomach pain, burning and oh I could go on and on. But I also once I received a diagnosis began to look back at my life and wondered if it was all part of the disease. Good luck on seeing the doctor, it truly is a relief to get the diagnosis to let you know you aren't crazy.

My symptoms started out very mild and got progressively worse over the years. They are also pretty consistent from day to day. I think my first sign was when I was 16 years old and tried wearing contact lenses. My eyes would dry out after about 2 minutes of wearing them. The eye doctor was baffled by this. My eye dryness gradually worsened over the years. But I have a friend with Sjogren's that told me her symptoms came on all at once. I guess it just depends on the individual.

Gradual , people just miss them in the beginning at least that's my take for most of us. Mine started with a my eye's then my mouth and fatigue was shortly after.
A few years later my joints started flaring and fatigue got much worse. Then my ears and jaw started in. Teeth started falling apart after that.
Now all 7734 has broken loose differing symptoms daily , one day my eyes bug me the next my jaw , then my ears act up. Jolly good time....
I have good days as compared to awful days. My energy has risen through my routines and regimen of vitamins and exercise.
Depends mostly on whether you get secondary ...seems secondary syptoms come later , like rhuemy and TMJ. Or fibro and lupus.
Digestive issues.....

Fun .....but you learn to soldier on.

I've had lots of the typical symptoms for years, really since high school. They were all just things I learned to live with until a few years ago when I felt like I'd been hit by a truck.
Just this last spring I started to see a new doctor. She had so many pages of health history to fill out. Boy am I glad she requested all that. Just by taking the time to ask the follow up questions and really listening to me she knew where to start.
My brother died of Lupus so she was suspecting that at first.
I have a different symptom every day. I had a really bad "flare" in July that my Rhuemy suspected was from the sun but it could also have been from stress.
Actually, as I'm typing I have to keep blinking my eyes because they're so dry.
Time for drops.
Hope that you and your Dr. can come up with a good plan for you.

I am actually having a pretty good day. Anyday that my mouth is not painful is considered good, although the fatigue is pretty significant but I will take anything tha isn't a sore mouth.

Hey there....just wanted to input my 2 cents about SS....I had symptoms way back....like when I was a youngster but the docs said it was just allergies.....wasnt until 04/05 that my symptoms led them to DX me as having SLE....then they added Hypothyroid....then MCTD and most recently the SS....so in my case I had some autoimmune thing going on since I was a wee little thing but it took many years before a DX....the worst of my symptoms were the (worst to least) joint pain, swelling, fatigue, general aching all over, headaches, eye pain, eye pressure, TMJ, ringing in ears, nausea, IBS.....now since starting Plaquenil and taking the eye drops & moist spray for my mouth some of these symptoms have gradually become less bothersome but there are days when it still does affect me in an all over body way

I would like to find something that will take care of my sore tongue when it flares up. ANybody got any ideas or suggestions?

Do you know exactly what causes it? Have you asked your dentist. I use a rinse every so often when my gums get irritated. But you would certainly need to ask more about it , if it would even help with your situation.
chlorhexidine: it has side effects like tooth staining if you use it more than two weeks. I use it at most two days in a row and whatever was bothering me usually clears right up.

I also get some irritations on the inside of my cheeks and this also clears that up fast. Mine is a bacteria problem iirc....

Ask?

This is an article out of my Moisture Seekers magazine.


"Q I frequently experience an intensely painful
burning and pin-prick sensation on my tongue.
Is this related to Sjögren’s? Is there any treatment?
A A burning sensation is a common oral complication of Sjögren’s syndrome.
The cause of a burning sensation/pin-prick sensation is frequently
related to decreased salivary flow associated with Sjögren’s. Lower
salivary flow will lead to decreased lubrication and subsequently more mucosal
(i.e. tissues in mouth such as cheeks, gums and tongue) irritation and
burning – especially with the tongue. As saliva has natural properties to fight
fungal/yeast infections, a decrease in salivary flow can also lead to an increased
risk of oral fungal infections. An active oral fungal infection
can manifest as mucosal burning. Other causes of
oral burning may be related to vitamin deficiencies, oral
allergies or autoimmune related oral lesions.
Successful treatment of oral burning requires the correct
diagnosis of the underlying cause of the burning.
Increasing salivary flow will benefit burning from poor
lubrication, and appropriate antifungal therapy will provide
relief for an active fungal infection. Appropriate
management can also be provided to supplement vitamins,
eliminate allergens or treatment of autoimmune
oral lesions.
Michael Brennan DDS, MHS "