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.
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 "!
(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.
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.
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.
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.
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.
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.
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
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
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.
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.
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.
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!
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.
Arthritis-like pain in my knees & fingers at age 23, saw a doctor who said, "You talk a good game, but this is not arthritis."
Ulcers in my mouth and the insides of my nose at age 28, my doctor said he wanted to do a "serum porcelain level" because I was a crock of sh**. He said if I would stop sticking my fingers in my nose, the sores would go away.
I went to three more GPs, a hand specialist, an allergist, an oral surgeon, an ophthalmologist, a chiropractor, two dentists, a surgeon, an OB/GYN, and an ear, nose and throat specialist. I was tested for allergies and gall bladder disease and stomach ulcers, had MRIs and nerve conduction studies, placed on a heart monitor, and thought to have everything from ADD to a brain tumor to an overactive imagination and a bad attitude.
But surprise! It's Sjogren's!
(Sero-negative)
Well lets see... hashimotos at 27. Before that pleurisy, anticardiolipin ab, miscarriage late trimester, ana positive. Then fastforward to thirties possible stroke...incident left a black hole on mri in my brain. left sided weakness at intervals with flares ,strange sensations in lower legs like a tight stocking on them ,dry eyes.
Now 40.... weakness, fatigue, the above, dry mouth too, and add some kind of lung inflammation that makes me cough and short of breath.and now joint pain. I think that is it :)
I think we are all so different in presentation and it is perplexing.
Sun sensitivity, fatigue, skin rashes, low grade fever, body aches on and off. Took about 5-6 yrs to get Diagnosis. Noticed the dry eyes and mouth for the last year or so and now
getting sores that don't heal in my nose. Don't feel so alone since I found this site though. :)
Dry mouth and throat and fatigue. My doctor thought I had allergies because my mucus lining in my throat was thick, but taking Claritin made no difference. It took me 5 more years to be diagnosed.
My first symptom was episodes of joint pain. I had weird sensation all over my body that I thought it was normal. It was this year after a big flare that everything else arrived. The joint pain started 6 years ago and everything else this year although I had mild dry eyes since 2010.
I am not sure of my first symptom, but I have had off and on swollen glands since childhood. I began to realize something was going on was when I was 37. I was diagnosed with hypothyriod and after that it all came at me.
I went to the eye doc for a bump on my eyeball. Turned out it was my conjuctiva separating from my eyeball due to dryness. I also began having trouble swallowing due to lack of saliva. My skin is really dry as well and I began to break out if I got in the sun. fatigue and brain fog. Then the scarier stuff began to happen.
right side bell's palsy.
paralysis/ severe weakness of my legs, tremors and other bouts of weakness in my arms and legs, and muscle spasms or twitching
Aphasia
joint pain in my feet and one finger (but it really hurt)
and most recently hypoglossal nerve palsy (tongue palsy) and atrophy
I have been on Plaquanil for a while now and I don't have the joint pain much anymore and it seems to be helping with the dryness a little bit. Hopefully I won't have anymore big stuff either.
I am ANA positive, speckled I believe, SS-a positive, thyroid peroxidase was 32 times normal when I was diagnosed, I am anemic and B12 deficient, also was positive for o-bands on spinal tap.
I was just diagnosed in the past year. Age 47. However, looking back, I think I've had symptoms all of my life. Just never really put it all together until I thought that my extreme dry eyes were causing me to have heart palpitations and making me fall asleep at my desk at 8:30 in the morning. Zero energy and I was blaming my eyes because I couldn't keep them awake.
Optometrist scored me a zero on the test. Said he's never seen such dry eyes. Started treating the first symptom and recommended I see an Rheumy that knew about Sjogren's (My response, "Oh, that's what Venus Williams has?" because it had just been in the news.) With that knowledge I started researching and scheduled an appt with the rheumy (Dr. Wonderful).
Things with my past started coming together. As a teen, I always complained about dry eyes. I have brittle nails and hair. My skin was always dry and pale because I couldn't handle being in the sun like others. Sleep! I was one of those odd teens that would go to bed early all of the time. My parents never had to set a bedtime for me. And I would sleep all night and a lot during the days if I could. But I still would have nights where I couldn't sleep at all.
At the age of 22, I had my twins. Very good babies. I could get somewhat of a normal sleep in but I thought I was allergic to fabric softener because when I would sit down to fold laundry I would fall asleep on the pile of clothing. I couldn't help it.
Driving. I have a hard time driving with my hands. Yup. I'm one of those that uses my legs to steer the vehicle a lot. Drives my husband crazy but my arms/wrists get extremely tired and week. I'm really good at making turns though. And since my arms/wrists are resting, if I need them, I can use them. It has been that way since my early 20's. Treated for tennis elbow once because I complained but it never really went away.
Those nasty women issues. I thought it was normal. itching. I remember as a teen getting busted and teased by a boy at school. He noticed me scratching with a corner of a teacher's desk. I didn't mean to do it. But I was itchy and just had to do it. Talk about embarrassing. I love making love to my husband (did my first husband too) but the pain scares me. Sometimes it wouldn't be bad and other times it would. There again, I thought it was normal until I came here. I've tried yeast infection treatments but it never really goes away.
Pain here and there. Normal right? When I started running 3 years ago, off and on I would get what I thought was shin splints. But it wasn't. I wouldn't run for awhile to see if it went away. Never really did. Until Plaquenil. Was told about 7 years ago that I have a slight curvature of the back and arthritis. Exercise/stretching and advil to help that. I tend not to complain about my pain too much but it is there.
The other symptoms that I've noticed that I just brushed off...during that period where I was falling asleep at work, came along the facial numbness, the numb and tingling wrists, my scalp tingles a lot and breaks out and palpitations.
I've also have pleurisy diagnosed several times in the past 10 years. Still get a sharp pain when breathing. Comes and goes pretty fast.
Pretty much sums things up for me. Blood work is negative.
It's probably too late to ask for people to do this but.......it would be really interesting to read the symptoms along with seeing the Sjogren's (/autoimmune) antibody results. With such a wide range of symptom progression leading us to where we are today, is there any correlation with the antibody results?
If people could go back and edit their posts in this thread with their autoantibody results, I think it would be really interesting! I will go back and edit my post, which is early in this thread but, for example, I'm SSb positive (SSa? negative), positive for TPO (and on/off positive for ANA speckled and anticardiolipin)
First symptom occurred around age 25 - my opthamologist told me I had dry eyes. I was young and totally unaware of autoimmune diseases, so I thought nothing of it and did nothing to treat it. My eyes were not bothering me, so I assumed dry eye was a problem that could come and go.
Around that same age, I began experiencing shortness of breath. Went to a pulmonologist, and all tests were "normal". You know the drill.
Fast forward to age 31, I was trying to get pregnant with my second child. Got pregnant but then had an early miscarriage at 6 weeks. My OB-GYN was nice enough to run bloodwork to check for anomolies, even though it was "only" my first miscarriage. That's when I discovered I had a positive ANA of 1:160 homogenous pattern. At the time, I was not having too many obvious symptoms.
Fast forward another month, I got pregnant again. Literally overnight, my eyes and mouth became super dry. I was running a low grade fever. My body was freaking out from being pregnant, and my immune problems kicked into high gear. I developed a subchorionic hematoma around the placenta, and was at risk of another miscarriage. But luckily I made it through the first trimester, and the hematoma resolved. My immune system also seemed to have calmed down for the rest of my pregnancy. I had my second child successfully.
6 weeks postpartum, I had another nasty flare. This one brought joint problems and tingling legs and feet. Major fatigue. The dryness was still there and had been since I got pregant. I went to the rheumy and got diagnosed.
The only thing that has ever showed positive in my bloodwork is my ANA, which tends to hover between 1:80 and 1:160. My RF does show a factor of 6, but that is considered "normal". I often think that number will probably end up creeping up as the years go by. All else is normal though - CRP, ESR, SSA, SSB...all normal.
I am still diagnosed sjogrens and on plaquenil and evoxac.