What was your first symptom?

[Patze]

Let's see....  Hashimoto's struck about seven years ago as it took almost a year to be diagnosed (the usual symptoms, loosing hair left and right, unexplained weight gain, cholesterol that suddenly went through the roof, dry skin, etc).  I'm still sero negative for it, but it was confirmed by a biopsy on one of several nodules I had.

Then the eyes got so blurry to where I couldn't drive as I couldn't see worth a darn (while wearing my prescription glasses).  That and with the unexplained pain got me sent to a rheumy, and the rest is history.

Take care of yourself -

Patze

[Prairie Gal]

My first symptom:  dry eyes.  Opthalmologist said it was a common problem for "women your age."  I used OTC eye drops for 11 years before the SjS Dx.   

I started making doctor's appointments because of the second symptom: it felt like something was running up and down both legs, nipping as it went.  First appt. with my HMO was with a nurse practitioner.  She ordered various tests.  Results: normal.

I saw two other drs. after that, each about 10 days apart, and each one ordered different tests with results  'normal.'   I kept making appts. because I knew there was something wrong.  When I saw the fourth dr., I mentioned my younger brother had had an AI problem, never finally Dx'd.  But he was told he had vasculitis.

This fourth dr. listened to me, reviewed the results of the tests each of the others had ordered and said  I needed to see a rheumatologist.   By this point, I was waking up at night with my tongue stuck to the roof of my mouth.   Interestingly, though, the "nipping" up and down my legs had stopped. 

At my first appt. with the rheumy -- just 7 weeks after my first appt. -- he said he thought I had SjS and to come back in 3 months.  I read later that having a dry mouth for 3 months is a clue you have something like SjS.    At that second rheumy appt., he said he'd like to start me on Plaquenil because, based on my symptoms, I had SjS.  He also wanted to order a lip biopsy.  I said I'd rather wait for the results of the biopsy before starting Plaquenil.   The biopsy finalized the Dx and I started on Plaquenil.  After almost 5 months, I had a much improved saliva flow.

Aching muscles and joints popped up for a couple of years, but the Plaquenil must have helped those, because they disappeared.  Raynaud's appeared about 3 yrs. after the SjS Dx.

My biggest problems now:  brain fog and fatigue.  Of course, my age may have something to do with these problems! 

[eyeamdry]

My first symptom came on with Lasik surgery 11 years ago.  The surgery made myy eyes dry and my vision blurry, ghosted.  After 7 years of this, a couple of more things started up.  I had numbness around my knees and my lips became numb.  I know, I know how could Lasik have anything to do with that?

My dr believes I had Sjogrens around the time I had the Lasik.  The lasik butcher did not test me for dry eyes and I'm still paying the price.  If I had not had Lasik, my eyes would still be dry but nothing like Ive had, but my vision would not be all messed up.  I am within one letter on the eye chart of not being able to pass my state driver's license test.  Maybe the butcher doc can drive me around.  I haven't been able to drive at night since the surgery.

Anyone with autoimmune should stay away from any kind of eye refractive surgery.  Any medically necessary surgery is likely fine, but the other stuff, no.

Lucy

[Mudpup]

My first symptom was the glands in my neck were swelling up. I had so many different things going on with me prior to that though, that I was already off work, because I was in so much pain all day every day that it got to the point that I couldn't even stand up at work. I worked in a Jewelry store and due to the distracting pain, my sales were dropping and that got me depressed with everything. As I was always good at my job and was top diamond sales.  Although I wasn't diagnosed with Fibromyalgia until a year after the Sjogren's diagnosis.  I am pretty sure I had the Fibro before I had Sjogren's. but I had the Chronic Fatigue,depression and Osteoarthritis all rolled up in this lot. but yeah the swollen glands first.

[Meld256]

Thinking back, my glands in my jaw and at the collarbone have swollen on and off for 10 years.

The real problem started with a huge painful flare Feb. 2009 after a day-long mega shopping trip. Horrible muscle and joint pain. It calmed down with meds and lifestyle changes until Feb. 2010. (Feb. seems to be a bad month for me Began insomnia, anxiety and depression.

Then it was an awful eye infection and cornea problems, which led to a Chronic Dry Eye diagnosis. About the same time, my mouth became extremely dry and my teeth began crumbling at an alarming rate. Few months later, I began with more joint pain, especially knees and back, and fatigue. Also had infection in partoid glands in Sept. which led to Sjogren's diagnosis.

[charla]

Since I was about 15 years old, my teeth began crumbling. I had thousands of dollars in work to save them but to no avail...I lost them all by my late twenties. I brushed, flossed, gargled, changed my diet, you name it, and the dentists still told me that I was not brushing my teeth. I was obsessed about keeping my teeth clean because of the nagging from dentists. It felt like no matter what I did, nothing could stop them from disintegrating...It was traumatic as a teenager and young adult to have teeth that looked as bad as mine.
About five or six years ago, my gland under my tongue swelled up and I had pain in my neck and jaw. Ran, literally, to the doctor crying because I thought I was dying. I had been suffering from odd sensations like tender spots on brow, scalp sensations of my hair being pulled, feeling like a lump in my throat, losing my voice, one eye's vision feeling darker than the other, just weird stuff for a couple of years before the swollen gland. The gland sent me over the edge and I was sure that something serious was wrong. My doctor didn't act concerned, told me my salivary gland was infected, gave me antibiotics, and told me to eat sour things. Even after swelling went away, my sinus continued feeling stuffy and dry and my ear feels plugged all the time. I went to the same doctor for over two years and she just gave me antibiotics every time and told me to keep eating lemons. I figured I was still alive so it must not be anything serious.
I finally went to an ENT and he told me that my eyes, sinuses, and throat were overly dry and non-reactive to producing fluid. He then asked if the underside of my jaw hurt. By this time everything kind of hurt on that side of my face so it was hard to pinpoint exactly where I hurt in the exact areas. I told him that I didn't know if it did or not. He mentioned Sjogren's and ordered testing at a later date.

[Sandisue]

Hey,

Mine was mouth sores...They were horrible. The Dentist told me I had Shingles. My Primary Care Dr. thought it was Herpies, (tested neg.) Then my ANA was off so she sent me to a Rhemy. and he just said autoimmune disorder? Then I went on line looking up Lupus and found Sjogrens, and then diagnosed myself...Took the information back to the Rhemy. and he agreed, said he had it in the back of his mind. My mouth is much better after starting Prednisone and Plaquinel.

Sandisue

[tomsmom]

My first symptom, almost 2 years ago, was extreme fatigue and weakness.  Then the joint pain, hair loss,  and then costochondritis.  Most recently I've developed dry eyes and some mouth dryness.  I've always had mouth sores-- my whole life in fact.  I was diagnosed about 2 months after my first symptoms began via  bloodwork.

[Blue Kat]

My first symptom or symptoms was about 15 years ago starting with bouts of extreme fatigue that would last about a week.  My doctor at the time said it was "probably" Epstein-Barr and left it at that.  A couple of years later I started having bouts of my whole body feeling like one big exposed nerve, where anything touching my skin felt like sandpaper.  I just ignored that until the symptoms became more and more frequent and I went to my current doctor who ran tests and found that I had a positive ANA.  She then referred me to a rheumy who tested me further and found I had a positive SS-A and SS-B.  Oddly enough, I still thankfully don't have any dryness issues but I'm fully aware that could change at any time. 

[Cinnamon Girl]

For me it was extreme dry mouth ~ not caused by medications..
so dentist told me to go to ER and have a skull xray , an ultra sound and a CT scan with dye to look at the structure and see if there was a stone in my salivary gland or a blockage in one of the ducts.
When all they came back as clear the ER doc snottily said ~~ see there is nothing wrong with you ! Stop comin here....when my GP got back from holidays he basically said the same thing....I knew something was amiss and went online to find a saliva flow test .....and set up a neuclear scan with dye injected....a technetium pertchnitate (?) sorry spellin...
that neuclear scan proved my saliva gland was not functioning and now I am still ona list to see a rhuemmy , however been turned down by 2 already.
I started salagen -- 4 weeks ago...*I think it is starting to work* it can take upto 8 full weeks....

[flutterfly]

hmmm...well i dunno 'cause everythin' got blamed on the SHUGS!!! type 1 diabetic insulin dependant 1995 (20yrs old) 
b4 that @ 16 i started havin ovarian 'tumors & cysts!!! i had endometriosis also & not able ta conceive! & always had exema/scoriosis & allergies thats swelled eyes shut! lets not 4get the bronchitus everytime i got a cold! (the sick twin) is how 1 doc said it...now twin is joinin' the party!!! (sorry kid~o)   

doc always thought i i had 'nother auto immune thingy but negative bloodwork all except my wbc has been elevated for over 3 yrs!!! (the stress & swellin' 1)

but my journey has gone as follows:

1. 2000~ diabetic gastroperisis
2. 2002~ joints...bursitis & arthritis
3. 2002~ agoraphobia w/panic attacks/major depression
4. 2004~ eyes start goin' wooky blamed it on nystagmus & silent migrains w/high end pressure but no sign of diabetes stuff
5. 2005~ feet start goin' numb & get pinpoint red marks all over skin of lower legs
6. 2005~ electric zaps & random numb spots all over (cum & go)
7. 2006~ started gettin' black~lines in finner nails (actually if i 'member right that started in 2003)
8. 2006~ muskels feel like they are always dehydrated & weak...started gettin' flickers & spasms everywhere also
9. 2007~ started havin' balance issues...now i sumtimes lean hard ta the left so i won't fall ta right
10.2008~ bladder starts not wantin' ta go when I DO!!! (sit on potty just waitin) figures...followed suit w/my poo
11.2008~ feel like i'm gettin' sick all the time just not up ta par...so ta say! flu~ey (throat hurts loosin' voice)
12.2009~ then i just started loosin' me...word findin' 4 objects (discombobulated cold med. feelin')
13.2009~ stutterin' or not 'memberin' stuff
14.2009~ face & numb & tounge...got dx of trig. (2010)
15.2009~ snow day hands where i feel like i just cum in from throwin snow~balls & 4got ta put mittens on (droppsies)
16.2009~ weird skin sensations~h2o runnin down a vein or creepy bugs just doin' a lil' dance~a hair tickle but nothin there
17.2010~ UUGGHHH...WEIRD RASH...ta add ta my other skin problems...this time it's a swollen face rash that looks like sunburn w/heat bumps!!! ITCHES INTENSELY & then peels like a sunburn! weird!
18.2010~ UH~OH....here cums the RAGE!!!

yes doc...it BUGS me!!!      @ least i didn't get ta 20! (well i would but i combined a few) tehehe!!!

humor keep me upright...snicker snicker!!!

~*flutterfly...pushin' print 4 rheumy appt.*~ ah~ha!  

[Joe S.]

My oldest was born in '75 also. I am glad that you are printing this out. Please bring an advocate with you also.

[sewandsew]

My first symptom was these miserable dry eyes.  It went on for years and the GP said it was probably allergies.  The aches have been around for years too. The GP kept saying, "there's nothing wrong with you."   So like any curious person, I went to the world wide web and diagnosed myself.  (Someone else here mentioned this too.)  So I said to the doctor, "do I have Sjogrens?"  The answer was, "hmm, someone has been playing on the computer."

After a few blood tests she called and was referring me to a rheumy, a dermatologist and an eye specialist.  She said she had no record of the dry eyes or the aches or the dry mouth--all of which I had been complaining about for years.  Doctors sometimes don't listen well to old mature women.

[Patty]

Wow, there is quite a range in first symptoms. I see many of you also were ignored or told you were fine by your doctors. I went through a lot of doctors early on. I can remember sitting in a parking lot in my car crying because yet another doctor had rudely said there was nothing wrong with me. The rheum I have now has been good about listening and believing me and treating based on symptoms and response to meds, but there are times even she doesn't listen. My husband is going with me to my next appt as I have found doctors will take what I say more seriously when he is along. Also he asks difficult questions and is insistent that they do something. The tinnitus is making it almost impossible for me to sleep and even vicodin is not helping with the pain, not to  mention I can't see very well. I need some relief somehow and am worried about what else my immune system is damaging while it is still out of control.