What was your first symptom?

[BonjourB]

Hi,

I am really curious about people's first symptoms. What was your first sign, and how did it progress?
Was it dry eyes for you? Dry mouth? Pain? Fatigue? Another AI disease?

There seems to be very little information in the research literature on onset. I searched research articles and came up with nothing.

Unfortunately, I suspect the doctors only diagnose/take all this seriously once things get much worse. So they don't really know about onset themselves. It would be so great if they did, though. Then maybe it would not take 6+ years to get the diagnosis!

I saw a post on this, but it was old, from 2008. I hope it's okay I am rehashing this topic.

[Iwantmylifeback]

Bonjour..I think that for many it may be hard to pinpoint how or when this started.  I was dxd at 20 but now looking back
I think I was born with it.  My mom said my skin was always so dry and my lips were also as a newborn. I did not cry tears. I had 22 fillings at my first dental visit at 5. I was one of 8 kids none of which had dental problems and alot of eye infections all nof the time, conjunctivitis, fevers often. Nosebleeds very frequently which were attributed to my excessive dryness. My normal kid viruses lasted far longer than my siblings. And on and on......

Mine was dxd after I donated blood and was rejected.  I have O - and it is always shortage.  I was sent to a heme and then rheum.  So actually an oddnway to get dxd.   Basically I just went onnlike before as I was told it was nothing to be worried about. My eyes and teeth were my biggest issues then.  Dentist was so over aggressive he ruined my teeth.  The surface of my eyes look like they were sandblasted.  That was in the.mid 70's. I was also dxd with scleroderma at the same time.  I remember the doctors saying it won't kill you but it will make you wish you were.

So fast foreward here I am still kicking it!

I do not think many "get it "!

[Friedbrain]

(edited to add my autoantibody profile, in brief:  I'm SSb positive (SSa? negative), positive for TPO (and on/off positive for ANA speckled and anticardiolipin))

Okay, I'll bite with a timeline because I don't know what I would call as my first symptom, since I have several things going on:

high school:  Hashimoto's (autoimmune, thyroid: extreme fatigue)
20s:  sporadic arm rashes, fevers and aches (NOT flu); positive for ANA speckled and and anticardiolipin Abs.
29yo: 1st trimester of pregnancy, EXTREME dry eyes even before I knew I was pregnant; fevers and achiness returned when nursing
early 30s: again dry eyes with second pregnancy.  Somewhere in there, tested positive for SSb but wasn't concerned about the dry eyes (as demonstrated with tissue in the eye test at the optometrist's)
mid 30s-after a bout of significant stress, experienced SEVERE and sudden onset (12 hrs) cranial nerve palsies and loss of balance.  More CNS and PNS symptoms over 2 wks (trouble swallowing, couldn't urinate etc).  Docs ruled out stroke and MS over weeks; solumedrol and prednisone taper helped resolve.  Two hospitalizations for ttl of ten days, including an ER run due to status epilepticus.  Docs didn't know what caused all the other stuff, but could treat seizures so I left second stay with AEDs.
6mo later: diagnosed with adrenal insufficiency, started cortef; whenever tried weaning, cranial nerve palsies would start to return.

Blahblahblah over the next 10 ys dysautonomia, waxing and waning of symptoms (like shakes!) but docs mostly left me alone with my meds while I tried to adjust to issues as they cropped up and cope. (Effects of dry mouth noted by dentist somewhere along the way)
Mid40s: new endo insists I try weaning off cortef.  I decrease by 30%, and PNS symptoms start up again.  Health deteriorates (return of mostly old symptoms like fever, achiness, fatigue; sporadic CNS stuff, and PNS stuff) and newer docs (not the booted endo) agree it sounds like autoimmune.  Positive still for SSb; low C3/C4, low RBC and WBC.  New rheum says Sjogren's could be causing all this, and try plaquenil.

[connie50]

Hi,

I first went to my GP with joint pain.  When shaking hands with an old man in church the ring finger on my right hand ached like it had been crushed in a vice.  I knew he could not have had that strong of a grip and that something was up... X-rays showed not joint inflammation or damage.

But actually my first symptom was fatigue.  My doctor thought it was depression and put me on antidepressants which did nothing.  I would sit in my studio like a zombie, all I wanted to do was sit ,standing took too much effort and I could not will myself to get to work.  Eventually it subsided and I have not (thankfully) had another episode that bad. 

When I went in for the joint pain is when the doctor put them together and ordered the ANA panel.
Still not diagnosed but working on it.

[Gayle]

Ok, I'll bite...

My first symptom was at 26, that was for sure this stupid mess, was multi organ failure. My Kidneys, (Glomerlonephritis) failed, my heart (CHF, Pericarditis, Myocarditis) and lungs, (Bilateral pneumonia). However, they thought I had Lupus and two years later said I didn't and they had no idea what happened.

But had pneumonia when I was 14, dry skin, terrible periods which caused me to have a hysterectomy at 21.

[P.Trish]

First: fatigue - I was a type 'A' theatre arts teacher, director, teacher-trainer & part time professional singer. My primary care dr told me that I just needed to accept that I was getting old. I had just turned 47, but aging wasn't the direct cause of my increasing fatigue. Like an idiot, I just kept 'pushing through' using caffeine pills and pure will power. 2 yrs later the infections (fevers of unknown origin) began every few months. I had every blood test known to man. ANA results not conclusive, but SED  rate & CRP high.
2nd: age 50 - dry mouth, kept being tested for diabetes
Had a stroke - cause could not be determined ( my rht side is somewhat numb, but I was very lucky).
3rd: Dry eyes  - age 51ish -  finally went to a Rheumotologist. Dx: differentiated  connective tissue disease, pointed toward sjogrens. ANA - 1:80
Plaquenil stopped the frequent infections, manage dryness with restasis & Evoxac. The fatigue remains.  Not sure if my response is what you are searching for. I hope you are having a good day. The people on this site are beacons of encouragement and helpful information.

[BonjourB]

Thanks for sharing your experiences. It means so much to me, as the standard websites and research articles can't answer this.

P.Trish- your response is helpful, as are all the others!

I am new to this world. I was previously really healthy, then 5 months ago I got dry mouth and salivary gland swelling/pain literally overnight. Then soon came a swinging thyroid and GI issues. Some fever, ridged nails (not a big deal, but weird), other dryness, and night sweats. Then some random symptoms that disappeared. And now dry eyes. I think a lot about what the future may hold.

I'm impressed with the people here, and I'm inspired by what people can still do with health issues. It seems to me like this may be more than one disease with common elements. Anyone doing a dissertation in AI disease should consider Sjs as a topic, there is much to learn! Symptom onset is really interesting, and it seems to start earlier than what is noted in the research. So many people with symptoms from childhood, teen years, 20s, and 30s.

[mshistory]

I'm not sure either. What finally brought me to the doctor was hair loss, but I had joint pain and swelling and fatigue for years before. I was 32 at age of dx.

[Styx]

I had profuse nasal drainage as my first symptom - like sleep is impossible nasal drainage.

Then, diagnosed with Crohn's.

Then severe SOB.

Then dry eyes.

Then dry almost everything else and finally...

dry mouth.

I'm not sure if I have "primary" Sjogren's, but I do have Sjogren's.

Styx

[SueAnn]

I went to the doctor for joint/all over pain and they did an ANA to find out if I might have RA.  The ANA was positive and I was sent to a Rheumy.  It was then that I realized I had dry eyes, mouth and other symptoms. 

Thinking back, I had dryness as far back as in my 20's. 

SueAnn

[matildamillicent]

Aged 6 my younger brother threw a fist full of sand in my face. Later that night my eyes were sore and a few days later, my mother took me to a doctor (we were far away from a doctor as we were on holiday at the time). It turns out the sand was stuck in my eye and had a 'ring' had formed around the outside. The reason the sand was there was because my eyes were dry.

The sore and swollen wrists at aged 8. Sore and swollen ankles at aged 11.

Fatigue aged 14.

Dry mouth aged 15.

I'm now 23. Diagnosed with UCTD or early Sjogren's last year. Plaquenil has helped a lot!
I also have Celiac Disease and have autoimmune liver disease, I'm in the process of being diagnosed with Grave's Disease and a pain management doctor recently diagnosed me with Ankylosing Spondylitis.

[Pisces24]

Well for me, I had "odd" blood number that were creeping up. Especially the white blood count. I also had numerous sinus and or throat infections. (5-7 a year which to me was normal.)

My gp was determined to find the cause and after 6 YEARS I finally got the diagnosis of Sjogrens. But I wonder If I had it since about 21 as my Hashimoto's was diagnosed then. Diagnosed by blood - SS-A, SS-B , Schirmers and ANA number were VERY high so it left no doubt.

[cactus]

I think I first noticed when my mum would say I was odd to be feeling hot in winter and cold in summer when I was about 8 yrs old. Clothes always felt itchy despite my poor mum trying her best. Same here about the dentist, 4 teeth out when I was young. Then in my teens I was feeling dreadful after P.E. lessons but just thought I must be unfit but I knew I really ached and wanted to just fall down.

There were episodes of swollen neck glands but was told it must be a virus. In my twenties it was digestion issues but nothing specific. When I was 35 and just had had my baby I was so ill, really flu like symptoms, but told it was post natal stuff, get over it! The dx came when a new G.P. took over from the retiring doctor. I came to see him about my dry gritty eyes and he ordered blood tests. Primary SS.
I guess it all makes sense now.

[cargillwitch]

I had a blood clot when I was 21- and very fit , a vegetarian non-smoker. the internist was baffled.

I developed Raynauds in my late teens and had frequent bladder infections all through my twenties and early thirties.

I swear the day I hit forty all heck broke loose! lol

I had severe GI upset, bloating, cramping, diarhea, and nausea for months.I cut our gluten and most grains and this helped immensely.I was diagnosed at this point with irritable bowel  and small intestine bacterial overgrowth.

My eyes began to give me problems shortly after, really irritated when I was biking or out in the wind but i really didn't give it a lot of thought.

What REALLY got my attention ( and got my butt to  my family doctor) was over the top, out of the blue anxiety attacks, as a nurse I knew these were physical in origin, not psychological. It felt like my adrenal glands were in hyper drive. I started to have muscle twitching, and extreme thirst. 
Sometimes I couldn't get words out right, I could see them in my head but they came out garbled. 
I was the one who brought up Sjogrens as a possible cause with my doctor ( my mom has it as well as  primary biliary cirrhosis and RA).
She thought it was just perimenopause and some mineral deficiencies but did the blood tests and there it was!

And that's me!

[Jellyb]

Hi everyone,
Reading all of your posts I feel like I  how strong all of us are, by enduring, and perservering and searching for answers, plowing through our days not feeling well and trying to keep up with everyone who doesn't have health issues like us.

I feel fortunate to have found this site, and know I am not the only one.