What was your first symptom?

[Patty]

Hi all,
Wondering what typically are the first symptoms of Sjogren's? I was diagnosed with Hashimoto's thyroid, then seronegative RA, then Raynauds,  vasculitis, now am told I am "very likely have Sjogren's". The hypothyroid happened 20 years ago. Five years ago I started having tingling and parathesia, then joint pain, rash,  Raynauds, cognitive problems, and most recently dry mouth and eyes. My Schirmer's test with numbing was 0 in both eyes. I have no auto-antibodies, but was on 3,000 mg Cellcept and 60 mg prednisone when tested. Haven't had the lip biopsy yet. The thinking is that vasculitis is my primary disease, but I am wondering .. Anyway, what were your first symptoms?
Patty

[ohiolady]

Patty,

My eyes and mouth went severely dry overnight, literally.  Followed by fatigue, neuropathy, autonomic dysfunction ect.  I now have gastroparesis added to the mix.  Also, have mild Raynauds and Hashimotos.

Anna

[navydad]

Patty,

My eyes and mouth went severely dry overnight, literally.  Followed by fatigue, neuropathy, autonomic dysfunction ect.  I now have gastroparesis added to the mix.  Also, have mild Raynauds and Hashimotos.

Anna

Same as me except for Hashimotos,, but who kows,, maybe now I do

[Daisy1234]

Hi Patty:

I have severe primary SJS.  My first symptom actually started about 15 years before I was diagnosed.  I had chronically swollen parotid glands.  Just a few years lately, I seemed to need alot of continuous dental work even though my dental hygiene was always really good.  Next I started getting esophageal spams that were confused with gallbladder attacks.  I had my gallbladder out but the attacks continued, finally saw a good Gastroenterologist who told me that I had both severe Gastroparesis and severe Esophageal Dysmotility and bad spasms in both of these organs.  That same year I was hospitalized with severely infected parotid glands. Salialigram indicated that salivary glands were no longer producing any saliva.  At this point I was still undiagnosed with Sjs.  A few years later my dentist told me that she thought I had Sjs and told me to get a referral to see a Rheumy.  I was then diagnosed right away but no one explained to me what Sjs was.  My GP at the time (I've since found a much better one) told me that it was just a little dry mouth and a bit of dry eyes and laughed it off.  Shortly thereafter I had my first of many many corneal ulceration. Because of its severity, I was sent to the hospital and saw an opthamologist there who told me that my eyes were both 0 on the schrimers.  I noticed the fatigue getting overwhelming at this point.

And the fun with SJS continues..... with more and more extraglandular involvement continuing, now peripheral neurophay, vasculits, Sjs spreading into my lungs and completely thru my digestive tract, IBS coupled with severe RA, arthralgia and a new one just this year Raynauds Syndrome.  Now I'm being checked for CREST.  I also have full scale lymphadenopathy throughout my entire lymph node system now as well.  This disease is like the best mystery book ever, you never see it coming!

Daisy

[DragonflyC]

That's sort of a tough question to answer.

As a kid, I had terribly crusty eyes every morning.  The doctors just told my mom to "wash them with baby shampoo."  

I had intense joint and muscle pain on occasion throughout elementary school, but everyone said, "Growing pains."  

I've had somewhat red eyes for as long as I can remember.

Senior year of high school, I kept fainting.  I was diagnosed with low blood pressure and told to take salt pills.  I developed Raynaud's and cold intolerance and was very tired.  I think it's pretty obvious that my autoimmune issues were starting up, but my doctor missed it entirely.  He didn't even order a single blood test.

During a period of intense stress in college, my eyes turned disturbingly red.  An ophthalmologist told me I was "allergic to [my] contacts," and gave me steroid drops and new lenses.

At twenty-eight,  I developed shortness of breath, especially upon exertion.  One doctor said "anxiety."  Another said, "Asthma," though there was no physical evidence.  When I developed pleurisy a few months later, no one ran an ANA test.  They gave me some pain meds and sent me home.

A few months later, I woke up to find that my whole body had gone arthritic.  I could barely move and everything hurt.  I was diagnosed with Hashimoto's (1:40 ANA) and tested positive for SS-A antibodies.  

A few months after that, I developed pleurisy again and walking pneumonia.  Once again, no one mentioned that it was strange for a young woman to have these problems (in June, no less).

By the age of thirty-two, my eyes were bad enough that I finally needed treatment for SJS.  My ANA was 1:640, my SS-A was elevated.  My dry mouth didn't become a problem for a few more years, but Evoxac controls it well at this point.  My eyes and arthritis are always my biggest problems.

I don't know if that was at all helpful, but it's my story.  

I hope that you get answers soon!  

[Nathan]

It sounds like I was pretty similar to Dragonfly.
My first major symptom, that lead me to seeing doctors, was intense eye pain. I went to doc after doc after doc before I ended up here (always one forwarding me down the line).
Major joint pains and so on came soon after.

[Lily]

Patty,

Hard to say because I must have been asleep at the switch for a long time without realizing something systemic was going on.  Had been finding it hard to wear eye makeup without feeling as if there was something in my eyes and waking up at night with a mouth that was dry as the Sahara.  

One day almost a year ago, it knew something was very wrong liteally overnight with what the neurologists said was polyneuroradiculopathy that I felt pretty much all over the place except for some here and there spots.  Within about a month was diagnosed with primary Sjogren's, Hashimoto's thyroid, a little CNS stuff.  

Have you read the articles that are here at the Home Page of this forum?

Take care,

Lily

[Joe S.]

My mouth had been dry for years. While still working my eyes went dry. When I was laid off, The stress put me into a flair. There were no jobs and the flair continued. Finally about 7 years later, I got a Doctor to check the symptoms and ignore the diabetes when he saw a butterfly on my face. Guess what? I had a new auto immune disease. Later I was told it was Sjogrens and not lupus by a neurologist. The Rheumy refused to tell me.

[Sha]

I agree with the others that it is a hard question to answer! I think it was hives/weird rashes, then dry mouth and eyes, fatigue and joint pains. I didn't look for a dx cuz the rest just came on all of a sudden and my doc ran the bloodwork which came back positive.

Sha

[williak]

I had a rash in several places on my face and mt hair was falling out.  After a couple of negative biopsy's, blood work showed up as positive.  He was a determined dermatologist.  I imagine I had various symptoms prior to diagnosis.  I have had "crusty" eyes as long as ican remember. 

Kim

[Maria3667]

For me it started with:

*severe change in mental well being: first time in my life anxiety attacks and bad depression
*the onset of (early) perimenopause when I was only 30, and didn't understand what was going on. My menses were diminished to only a few drops per month - and shorter cycles (21 days - 24 days)
*1 year later painful dry mouth
*eye infections - because I kept on wearing contact lenses - not understanding that my eyes were too dry
*painful joints, especially knees
*after 4 years a rheumy diagnosed me correctly with Sjogren's
*same year hypothyroidism
*now at 43 I'm going through real menopause.

Take care,
Maria

[Navigator]

For me it started with pain in the neck and shoulders that moved around. I had already had Hashimotos for about 30 years at that point.

I never had a lip biopsy.  The bloookd work and symptons were enough.

[Jen_in_GA]

Hmmm... I don't really remember the first symptoms, I feel like I have always had them. What made me finally go and get checked was the joint pain and always feeling like I had the flu. Body aches and low grade temps. I've always had gastro issues also. There are others, but those are the main reasons. I had the dry eyes and dry mouth but I didn't realize those were symptoms! I just thought I had dry eyes and a dry mouth. LOL!

[Scottietottie]

Hi

I alsways had bad teeth. Was that my first symptom? I knew my dental hygiene was as good, if not better than my siblings - but my teeth fell apart, despite regular dental checkups.

I was first investigated for MS - which I don't have - 25 years before I got a dx of Sjogrens. Was that the start? If it was - it was intermittent muscle weakness and 'gloved' sensations in both hands and feet and an inability to walk in a straight line.

I don't know when it started. I've had very few 'well' periods in my entire life so having SjS is probably not as bad for me as for someone who remembers feeling really healthy.

Take care - Scottie 

[Patty]

Very interesting - thank you! It sounds so familiar. I have had dental problems for years which accelerated in the last year in spite of my best efforts. I guess the question about my own case is a little like "what came first, the chicken or the egg?". It makes me feel a bit better to know lots of you have been down this circuitous path of evolving illness though I am very sorry you had to go through it. Some of the docs I saw early on thought I was a hypochondriac or a little crazy, making me wonder if perhaps I was. I have also always questioned all these Dx as all but SED and ANCA have always been inconclusive or negative. My dx have been based mainly on symptoms and the efficacy of various treatments.

I now have chill sensations which can be severe, causing me to literally shiver, even in a warm shower, very loud tinnitus and clicking in my ears, and damaged occipital nerves from inflammation. Every few months there is something new. Going to push my rheum to see if there is some more effective treatment than the Cellcept.

I haven't read the articles - hadn't noticed them - but I will - thank you.
Patty