what was your first symptoms of this syndrome?

Can anyone tell me what their first symptoms were? I am still trying to figure out what is wrong with me, and i have many of these symptoms. Although I know these symptoms can mimic others. I've had so much workup and tests done. We have figured out a few things, but I still have so many weird symptoms that I think my doctors are missing something. Hearing how people felt at first would be a great help. Thank you so much.

Welcome,

It looks like as of now at least 48 people have read your post. It is not at all old. But sometimes we are busy with jobs or managing disease and don't have a chance to comment right away.

Sjogren's Syndrome is often a secondary disease, so most of us might not even know what the first symptoms meant & what was associated with the main disease (mine is Lupus) and what is part of the secondary disease.

I think, but am not certain, that my first Sjogren's symptoms had to do with dry itchy ears. But not many people talk about their ears. Usually people's first concerns are about dry itchy eyes and dry mouth. Along with ears & eyes I also have a dry nose. Other people have dry membranes in their privates -- and some present with dry membranes inside the body - I'm not sure what the symptoms are that point the Drs in that direction.

Cheers -

There aren't alot of active forums on sjogren's syndrome online. This one is actually one of the better ones in terms of responsiveness.

To answer your question, my first symptom was chronic eye infections. My tear ducts would become infected. An eye doctor diagnosed my dry eyes and recommended tear ducts. It wasn't diagnosed with ss until 5 or 6 years later. I never did the tear ducts, but i discontinued wearing contact lenses because of it and used medicated fake tears. My eye infections havent been back, but I developed other symptoms.

Mine started out with a really bad eye (boil, had fever and everything) infection followed by 4 eye surgeries, then the dryness so bad that I have to have eye plugs either yearly or bi yearly...

I've been away for awhile and do not check this forum to often as I have so many autoimmunine diseases, once you get one your prone to getting others...my SS is secondary to other conditions...

How did your SS start?

If you think that's a probability then talk to it with a Rheumatoid Doctor as they are better at getting this a diagnosis...Dry eye, dry mouth, dry nose...might be worth getting the blood testing done first, before doing the lip biopsey...But talk to an RA Doctor, as SS is an autoimmune disease and RA doctors know about the autoimmune diseases...

Yep, it sounds like autoimmunity =)

My second diagnosis was chronic sinusitis. Right now I'm dealing with constant stomach problems, chronic sinusitis, neck pain, headaches, and inflamed lymph nodes. I have a Vitamin D deficiency and doctors have said i have anxiety.. but honestly who wouldnt with all this going on LOL. Been to a gastroentologist, ENT, neurologists, 6+ general docs, endocrinologist, ob/gyn and a rhematologist.. the rhematologist saying "you have lupus take prednisone" yet, I don't have the SLE antibodies or symptoms for lupus. I am so thoroughly fed up with going a round and around with it.. that I consider each day that I am not exhausted a personal victory.

Welcome to the nightmare called autoimmune disease.

Paddicake 77-sorry to hear you are not feeling well and having difficulty obtaining a diagnosis...for me personally, this was very frustrating and caused me to almost give up entirely.  I had to switch drs twice before finding the third GP that told me he would keep looking until he figured out what was wrong with me.  Many bloodtests later - low and behold sjogrens diagnosis.  I had been sick with sinus infections for 20 years and then 2 years ago I just became very ill during the summer.  So sinus issues were my first clue, but later came unexplained anemia, heart palpitations, aches and pains in my joints, salivary and parotid gland issues, teeth issues, extreme fatigue - crippling at times...pains in the lungs and chest that could not be explained by tests.

Did your dr run an autoimmune panel?  Any dr can order these tests -if they come back positive you will need to see a rheumatologist for treatment options.

I hope you find some answers soon - the waiting game is no fun and trying to live your life to your fullest when feeling lousy all the time is no way to live for sure.

Please keep us posted,

sending positive thoughts your way.

Your primary doctor or an RA doctor can do this bloodwork, an RA doctor would be the better doctor as then he'd be able to do a treatment plan for you.
Keep us posted as to how your doing.

Hi Everyone.

I'm sorry you have Sjogrens but glad that this forum is here. Thank you your posts and all of the information.

I was diagnosed w/Sjogrens a couple of months ago (age 54) but looking back I think I'd had it for 2+ years. My very first symptoms were pressure, pain, and swelling in my salivary gland. At first, I'd place a hot wet towel on the side of my face and it soothed the discomfort. Over time, it got worse, and my mouth gets extremely dry.

Mainly, I have been exhausted -- even after 11 hours of sleep. My esophagus(sp) feels inflamed and lately have been experiencing nausea and no appetite which is very rare for me. The worst part lately has been an extremely dry mouth. It's uncomfortable and need to drink water to swallow sometimes.

The symptoms ebb and flow. Sometimes I think I'm better but it comes back worse. What I find helpful is juicing to make sure my body gets proper nutrients which does help as it gives me more energy -- sometimes.

I also decided to try Hydroxychloroquine twice a day because the symptoms have been worse. I've heard more positive things about the medication and am hoping it will help.

It's hard for family members to understand Sjogrens -- how do you explain the utter fatigue that comes w/it? Most people think it's general tiredness but there are days when getting up for work seems like a monumental task.

Anyway, good luck everyone and thank you for sharing your experiences. I appreciate it.

Paddicake--Sjogren's syndrome has so many symptom similar to other illnesses and it can take YEARS to be diagnosed correctly.The surest way to be tested is to have an ETN doctor remove saliva glands from your mouth.I had 12 saliva glands removed and they were all dead!!!So that's me with sjogren's!! The removal took 5 minutes and I was numbed first--nothing to it!!Now I see a rheumatologist regularly. Good luck rtljil

So you are my first post. It's seems appropriate to write about my first symptoms. In 2011 my ANA Screen noted strongly positive. This is an autoimmune disease blood test. In 2012 I had a work up by a rheumatologist to screen for all autoimmune diseases (blood tests), where she found that I had a positive protein for SSA/Ro Ab. There are two proteins they look for and I was positive on one. During this time I was extremely exhausted. Fatigue is a symptom. I ached all over. I told my doctor that something was wrong because of these continuous symptoms. That's when I saw the rheumatologist.