Sjogrens World Forums

I thought this should be a poll too since there was one of a diagnosis age. But we all know we have had it a long time before our diagnosis

I always had weird health issues growing up. Ear infections eye troubles, lots of cavities and super sensitive skin ect. But my symptoms really became difficult when I turned 30. It's like a switch got flipped and I knew something was really wrong with me. Diagnosed at age 48
:-(

Ditto!  I had issues as teenager.  My eyes did not tear.  I was in glasses at an early age (probably not connected).  I had knee issues and could not run.  I had strep throat often.  I constantly had pink eye (or they thought it was pink eye at the time).  Eyes were always red.  Constantly in eye doctor for meds because pink eye is contagious and they sent you home from school. 

I got frequent bladder/kidney infections as a teen.  At the age of 13, I started wearing contacts and no matter what type I tried, I had issues with the red tired dry eyes.  Was accused of being a drug user by my friends' parents and teachers.  Sad.  Could never do things like ice skate because I had "weak ankles" and they would hurt me all of the time when I attempted to do anything like that.  Had a terrible time with pains in my sides that went undiagnosed.  At the age of 32, had my appendix removed but I don't think it was the cause.  I still get the sharp pain when I breath in.  Was diagnosed a few years ago with pleurisy and suspect that I had it when I had such pains.  So many signs looking back.  After giving birth to my twins, I thought I had a reaction to fabric softener because I would literally fall asleep in a pile of laundry when I attempted to fold them.  The fatigue and insomnia always a part of my life.

so far, looks like alot of us started with this under age of 20. I remember starting with puberty, but when I talked with my mom, she said
I always slept as a baby..and then, remembering grade school, always had my head on my desk and was just super fatigued. I know when I was born, I had pneumonia, so maybe that infection set off my bad genes way back then....uhmmmmm

Gursie

I was sick a lot as a child so could have been SjS. Then took hormones which most docs think held symptoms at bay, that is until I hit menopause. Then I felt like a clock that exploded and sprayed broken parts everywhere as so many things fell apart at a blistering pace.

Wow. Were we all so ill in our youth?

I was also quite sickly growing up. I had sinus infections at least 6-8 times a year. Then my nose basically exploded into debilitating symptoms when I was 21.

It was all downhill from there!

Styx

Yes, I am sure I had it for decades before diagnoses. From my early childhood I had Chronic ear infections, throat infections, sinus infections, bronchitis, yeast infections, bladder and kidney infections, migraines, fatigue, low blood sugar, low blood pressure, tendonitis, undiagnosed joint pains, etc... I had times I could not take part in gym class due to severe pain and there were days I could not go to school because the pain was too bad to walk.

Doctors never found a reason for it. One told me to lose weight to reduce pain (not good to say to a 12 year old self-contious girl! I had hips and breasts early, but no extra fat). The start of dryness did not come until I was in my late 20's and then after pregnancy everything was bad and it took till my late 30's to get diagnosed after begging for years to see a specialist.

My daughter was "lucky" to be diagnosed by blood tests at 17 - at least she didn't have years of being told she's a hypochondriac.

She used to be the last of our kids to get any of the illnesses going around. I was once told her immune system was probably over active then, but hadn't started to attack her body yet, if you get what I mean.

Seems like the extreme hormone changes really activates this disease..Im with Sjogirl...after my hyster almost 7 years, my entire body just
flipped out and Ive been pretty much bedridden ever since.

Gursie

Tonsils out: age 5.  Mom used to say "you were always sick".  Began having serious dental issues in early 20's... cavity after cavity, abscesses, etc  -- but this was in the 70's and was told I just wasn't taking care of my teeth.  Age 28:  DeQuervain's wrist surgery on left .... age 29 same on right (RA predictor).  ITCHING fits/bouts that made me want to jump off a CLIFF .... body rashes.  Then a decent long period of time with...pretty fair health until 2006, at age 51.... then BOOM.

This is crazy, I am wondering if we are actually born with it. Or the gene for it and it lays dormant till triggered. These descriptions mirror my own childhood. Always twisting ankles just walking across the room as a kid, constant throat and ear infections, they said I needed glasses at 3. As I got older always sick, tired, started my periods just after 10, started using contacts at like 15 and they would irritate my eyes no matter what kind I used, often they dried on my eyes. Has serious GI disease since I was a kid.  Had about 10 cavities by the time I was 10 lol, went on after developed an acute thyroid disorder. Till this day they dont really know what my thyroid disease is. Just that I have antibodies for both hashis and graves, and I go up and down.  Just sickly as my family would say my whole life.

Someone said big hormone changes in life seem to trigger flares, I think I am seeing a pattern. 

Never had any sickness or problems until I was 24, constant sinus infections and strep throat, had purpura all over my legs and arms at 26.  Thirties started getting tired and sleeping all the time, never used to nap at all.  Had tonsils out at 40, NEVER DO THAT IT HURT, did not stop sickness, started falling asleep while driving, go through periods of no sleep for 3 days then sleep 3 days straight, sick sick sick, thought I was crazy.... Finally got to see Immuno Dr. and was diagnosed at 40.  Too long for someone to go through all of that.

Elementary school. Always sick. Multiple infections/pneumonia. Skin problems. Joint/muscle problems. Lung removed at 14..gastro issues...and on an on until present day.. way too many wrong diagnoses and treatments through the years that never discovered the real diagnosis..until age 53 :-\
SjoDry

I actually was a very healthy kid!

all my siblings lost their tonsils early- I held on to mine and missed less school than most children.I never had the ear infections and colds they had recurrently.

they only "odd" thing I had prior to 20 was hyperthermic uticaria( I once passed out due to exposure to cold and the resulting hives)

This progressed to Raynauds in my 20's.

I had four babies between 20-28 and things began during this time. Bladder and kidney infections,deep vein thrombosis( even as a young, non-smoking , running vegetarian at a low weight) and extreme cold intolerance.

around my mid thirties I had recurrent bladder infections for a full year!Insomnia plagued me,and I had a bartolin gland cyst( surprise an exocrine gland!) removed surgically.A few years later the GI issues hit full force, diarrhea first, horrific gas, bloating, nausea non-stop and then constipation. The mouth ulcers hit with thrush.I had 8 fillings in three years.I was thirsty constantly and as a nurse I frequently tested myself with glucometers worried I was developing type 2 diabetes.

It wasn't until my anxiety went through the roof that I really knew something major was up- this wasn't just" perimenopause " that all my care practitioners claimed it was.

I was at my 42 birthday.

One day I realized my eyes had been bloodshot for months and I felt that I was yet again getting pinkeye. It didn't hit me until that moment that it was sjogrens'- even as a nurse- EVEN though my mother has sjogrens'! I had also believed that sjogrens was just a minor "eye and mouth" inconvenience . My mother's  systemic issues I thought were due to her additional diagnosis of Primary Biliary cirrhosis.
I went to my own doctor and told her what I suspected- she agreed to test for it and set up an appointment with a rheumatologist. I think she really didn't think i had it but i didn't visit her often so she agreed.

Sure enough ,i was unfortunately, right

I was at least 40; I remember periods of a week or two when I was just plain faitgued with no temperature and a headache; it would go away and come back a few times a year; then in '08 and early '09 (when I was 53) a bout of fatigue, something I now call a flare, came and stayed for a while; only then did I get more sensitive bloodwork

I was constantly getting bronchitis and couldn't wear contacts because my eyes were too dry per eye doctors statement.   I remember once going to the dentist as a child and having 27 cavaties.

I don't really know. I've had the GI issues since 11 years old but I can remember being in school and having trouble with dry eyes/dry mouth, which I blamed on the antidepressants I was on for chronic pain at the time.

That would have been around 16/17. Around the same time I had about every tooth in my mouth filled.