Hello,
I am curious, what were your first symptoms? My first symptom that I was aware of was red eyes, then they became dry.
However, I have that other AI disease, so I always blamed everything on it. I have had a lot of dental problems the last few years too.
Thanks.
hmmm,my first symptoms were I was nauseus all the time,and extremely fatigued. Of course I blamed it on arthritis and all the pain. I was like this for 2 years before I went to the Dr.
This is a hard one to answer for me, but it would be the fact that I had burning eyes two summers ago. Then in May of this year severe joint pain sent me to the doctor for relief. It was there that I was told I might have RA according to my blood tests. I was referred to my Rheumy and he said SJS. After educating my self about SJS, I realize that I have been suffering from fatigue for some time and those muscles I thought I pulled might have been part of SJS. I didn't even know I didn't produce saliva until I was given Evoxac to try. ??? I was just thinking about all this the other day, so I am glad you asked the question.
Sue Ann
Hi :)
I think my very first AI symptoms was a severe headache, burning scalp and then a swelling that moved slowly down my face leaving me with low level fever for about 3 months and a lot of fatigue.
When the fever went the next symptoms were repeat episodes of 'tennis elbow'
Dryness crept up slowly many years later.
Take care - Scottie :)
No tears, dry eyes and red, painful skin around them.
A bitter, salty, and metallic taste in my mouth. Lost all taste of food, and loss of smell. Also joint pain and fevers. Thats when I decided to go to my Rheum doctor.
Designer
This is all very interesting.
Hi Clementine,
The first symptoms? The exhaustion was unremitting, brain fog, the eyes where so dry that I could barely see with my prescription glasses on, and the muscle pain. But remember that my thyroid was slowing down at that time too (I also had a goiter that was pressing on my throat), so I can't say which symptom goes with what ever is running around the body these days.
Take care -
Patze
Hi Clementine
The first symptom that started me on this current journey was a numb toe. Just that! Next to tiniest toe on my right foot. I mentioned it to my GP 3 years ago and he replied 'when did that tremor start in your hand?'. I didn't know I had a tremor! Two months later I was at the neurologist and he diagnosed MS - Primary Progressive - within minutes, he told my GP, of seeing me.
My symptoms were all neurological and my walking, use of my arms and speech gradually declined. It was only when tests didn't confirm PPMS that the rheumy was brought in. He diagnosed SjS with the Schirmer's test and then blood tests.
Looking back I've had years of SjS symptoms but always ascribed them to the exhaustion of having three children/endometriosis/heart problems/trying to fit too much into a day.
This is a really interesting thread. Thanks for starting it.
Chana x
My first symptom that got me in to a doctor was my eyes would start hurting at the most random times. It took me a while to realize that I was photophobic. My eyes hurt the worst at work (in a room full of the brightest florescent lights ever), but it was mainly my right eye. I went to an optho, and after about the third visit, he asked me if I had any joint pain. Sure enough, not two days earlier I started having joint pains, so off I went to a rheumy.
Clementine,
Guess I'll always think of my first Sjogrens symptoms as my burning mouth and sores, as these became the diagnostic ones. This was a huge insight, my whole life of other rather odd but serious complaints came together and the fit was like a glove.
Now sifting through the ages to try to figure when it all began. Arthritis in my 30's? Over drinking water constantly as early as 10?
Chico
Looking back, I know my first symptoms were carrying around a bottle of water or always having to have something to drink for the past 5 years. In February, I noticed my eyes were dry in the morning when I would wake up. I also noticed that spicy foods and regular toothpaste bothered my taste buds. On March 2nd, I woke up with blood shot eyes. On March 28, I saw the eye doc and kept complaining that my eyes hurt and were dry after many rounds of antibioitics. It was on that same day, my mouth went dry.He asked my if my mouth was dry and did the eyes tests. He said you probably have Sjogren's. He was correct!
My first symptom was dry/burning eyes as a teenager. i never gave it a second thought, never worried of it, just thought it was norma. My second major symptoms happened 7 years ago with incredible itching and lots of recurrent mouth ulcers and some joint pain. a few years later, after a blood clot and thyroid tumor, i pressed further with my doc and after looking at my issues, over time, and lol....he asked about my eyes and if my mouth was dry.... ding, the bell went off. off i went to the rhemotologist. life isn't simpler, but I know what's going on.
Dave
I guess, waaaaayyyy back it was dry eye and light sensitivity.
I was in my early teens.
Two years ago, I literally woke one day with severe dry eyes and mouth. Looking and back and trying not to think too much about it, I wonder if it began earlier. My whole adulthood life, I always had a glass of tea in my hand. I think my eyes became dry sooner than I realized. I didn't know that tearing was a sign of dry eye and would have that periodically.
Anna
Hi Clementine,
Good thread.
My first symptom was a marked decrease in my sense of smell and taste. Next came fatigue and enlarged parotids. Everything seemed to happen relatively quickly - I don't remember having any symptoms when I was in my 20's or 30's.
My first symptom was a very dry itchy right eye, I had to go to a 24 hour pharmacy at 3am to get drops, which didn't help. Within a week of that, the a horrendous nauseating fatigue set in ...
Sore and stiff joints, it took at least 45 minutes to get out of bed and get dressed, then when the bones in my foot were popping in and out of place I went to my Podiatrist, who sent me to a Rheumatologist thinking that I RA.
Fall of 2002, my contact lenses started bugging me a bit -- felt gritty if I didn't use a lot of rewetting drops -- and I developed tendinitis in first the right shoulder, then the left -- quickly followed by tendinitis in both knees. In early spring 2003, I woke up one day with wretched tendinitis in my feet & ankles, and by summer my hands & wrists joined in. I had to stop wearing the contacts by very early 2003 because my eyes had gotten too dry.
I had plenty of fatigue, too, but aside from noticing that it was getting worse -- and that my headaches had become almost daily -- it seemed like the chronic fatigue syndrome I had been diagnosed with in late 1991 was worsening again. Of course, now I wonder if it wasn't SjS all along. My eyes & mouth are dry, but not to the point of many of the folks here -- even though I'm sure it's been SjS since 2002 and until this past May I was only taking NSAIDs, I've got no corneal damage (despite failing the Schirmer test with flying, arid colors) and so far I've only got erosions, but no (new) cavities in my teeth. Of course, the mouth dryness really only kicked in maybe in the past couple of years... it was gradual, anyway.
Seabreeze,
Thanks for reminding me to take my second dose of vitamin D.
Nine years ago next month, I had Lasik surgery. (eye surgery) It was supposed to be easy, painless (almost), and 99.9% successful. About a month after, my eyes started to burn and my vision never healed. My eyes would not heal, period. I went across the country for the next 7 years looking for help. There was none. Not one of these very highly regarded ophthalmologists ever suggested Sjogrens as a possibility. It was in the back of my mind after awhile. About four years after the eye surgery, I began to have numb lips! and numbness around my knees. I had a partial knee replacement and was having all over joint problems.
I was having carpal tunnel surgery on one hand and just before this, I was reading about carpal tunnel surgery. Along the side of the article was a list of 10 signs of Sjogrens. BINGO. I had 9 of the 10 and was sure right then that I had Sjogrens. Within a year, I'd finally got to the right doctors and tested positive and have Primary Sjogrens. Looking back, I can think of things back in my 30's and 40's and even younger that could have been "this." Lucy
It is hard to say because i continued to be ill after having mono and the human parvol virus. My skin was dry that the nurse bent the needle when she tried to give me a shot in the arm. and my white count has been low for over ten years. recently I started with the dry eyes and dry mouth.
Collie
Not officially diagnosed yet.. but my first symptom was swollen salivary glands (doctors diagnosed mumps).... it literally all started overnight for me.
The symptom that drove me to find out what was wrong was eyes that were really dry, gritty and bloodshot to the point that my children in class thought my eyes were bleeding, but with hindsight I now realize I had had sjs long before that as my mouth would shred inside at night and I have always had mild fatigue and thought I was lazy. Also had a bout of swollen knees which I put down to riding and karate at the time but now realize was probably related to arthritis.
Beverley
This is a hard one as I've had autoimmune stuff going on for 25+ years (I'm 52 now) and have had so many different symptoms ::) which were diagnosed as CFS (Chronic Fatigue Syndrome). My bloodwork is negative and always has been, but I may have had Sjogrens all along :-\
My eyes started to get drier about 5 years ago...so I guess that may be the first dryness symptom.
Lesley (New Zealand)