Sjogren's & dry eyes - Reply to Sharon

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Sharon:

Wow. Sorry to hear that you have gone through so much. Thought I elaborate a

little more. I use an eye mask at night because the air exhaust from my CPAP

sometimes blows in my eyes at night, making them even more dry. The mask helps

prevent this. Might want to go back to your pulmonologist, or whoever you saw

for the sleep apnea and try out some other masks. Find one that works better

for you so you'll use it all night. As far as the extreme thirst, my husband is

an insulin-dependent diabetic, so I can understand why dr. checked you for that

and glad to hear it was not diabetes. Thirst that extreme has a reason. Don't

give up on finding the cause and don't give up on trying to get some relief for

the symptoms.

The Schirmer test doesn't take 30 minutes. If you have dry eye, leaving paper

in it for 30 mins. is not a good thing. My doc stood there and waited. You

might want to find another doc because that was flat out careless of them.

I believe that severity of my dry mouth symptoms were caused by the sleep

apnea. While undiagnosed/untreated my mouth was open a lot at night (since my

brain was desperate for oxygen!) which exacerbated the dry mouth symptoms.

I don't know if thyroid could be a cause of dry eyes/mouth, but I'm sure you

already checked into that.

Anyway, I'm no dr., but I hope that sharing some of my journey has helped you.

The most important thing is not to give up on finding answers and solutions.

in Texas

sharon studley <seescallop@...> wrote:

- Thankyou for taking the time to detail this out for me, as

it may have answered my ? I too have sleep apnea, and don't wear my machine

faithfully! I know, but even after adjusting to different mask, machine with

water for moisture, I rip it off after a couple hours, either because my mouth,

and throat are chocking dry, or it ends up the seal around my mouth somehow

moves, and air leaks in waking me up from the noise, I have the thing so tight

on me at H.S as it is causes head pain I can't tighten it anymore. I to have

water 24/7 and I mean 24/7 can not go 10 mins without a drink, it is everywhere

I go, always in my car with me when I can get out, have been home so long now. I

had been tested over and over for diabetes as they thought sure symptoms were

this but Neg. The only other thing is my thyroid disease which when I had it

removed back in 77, I still woild have symptoms of Graves Disease I had, but

later after moving and new Dr. they claim, my

thyroid was removed which ended the Graves disease???? No wonder we get mixed up

with what is what. My eyes, I do keep up with, but back when the Dr. removed my

thyroid he said I needed to see a opthamologist every yr no less than 2, and did

when younger, but now can not get the referral from Dr. to see one, so insurance

will pay! I did last summer have the weirdest thing happen which I had never

heard of but since read about somewhere just recent. I had my white cells attack

my eye, it is also autoimmune thing, but it did this for no reason they

explained that the white cells raced to my lft eye, telling it there was

something wrong with it, which there wasn't, I just woke with pain in the eye

and the white all red blood vessels had covered it, it hurt so bad it was the

wkend of course, so had to go to ER, my things by the way always happen on wkend

costing more. But saw eye Dr. who diagnoised this and told me if I had let it go

I would of gone blind! He said it is

not common, which sound about right for me because all my life anything that has

happened to me has been a weird thing. I threw a PE and usually follows surgery,

but not me, just happened, my thyroid disease was not just a bad thyroid, had

what they call thyroid storm and by the time I got to a Dr. was admitted

instantly to Hosp. as another 20mins would of died. Anyway guess I really should

work on wearing my machine at night Huh? The mask I have I was told is the only

option for me. Thanks again for your help Sharon

Pou <jenncrew@...> wrote: Sharon:

It wasn't difficult for me to get diagnosed. Sometimes the dry eye, etc. can be

simply caused by the RA, sometimes docs diagnose as Sjogren's. I know that

primary Sjogren's (which is not what I have) has the symptoms without another

auto-immune disorder as a factor (in other words, the patient doesn't also have

RA, etc.) I had horrible dry mouth and would even wake up several times a night

to drink. I kept water on my bedside table at all times. Of course, after I was

diagnosed with sleep apnea, and was treated (I use my CPAP machine faithfully),

the dry mouth got better (but didn't completely go away). I see my dentist for

the dry mouth problems and my optometrist for the dry eye problems. If you have

Sjogren's (or RA that involves your mouth or eyes), you need to find that out

and keep it in check with the appropriate doctors. Even if the dry eye is caused

by something else, if you're putting drops in your eyes several times a day

because the dryness is so bad,

talk with your eye doctor.

Best advice I can give you is to educate yourself on this topic and talk with

your rheumy.

God bless you.

in Texas

sharon studley <seescallop@...> wrote:

This Sjogren's is this another hard to tell thing? I just wondered as I have the

dry mouth, thing can not go without water at all, never. I also was told by my

optometrist a couple yrs ago that I had dry eyes, I don't blink enough which

causes me to not make enough tears and use moist drops. ??? I always blamed

symptoms on my thyroid condition, or lack of having one. But this I keep seeing

and sounds like what I also have symptoms, though you know since I went through

so much get the right Dr. to help me and diagnois my Fibro, without making me

think it was all in my head, I have great ones now, but catch myself not daring

bring up another thing wrong to them because of it. Sharon

Pou <jenncrew@...> wrote: Sue:

When I complained of dry eyes and mouth, my rheumy said that I probably also had

Sjogren's and that I needed to follow up with my eye doctor (and dentist). My

optometrist did the Schirmer's test (the little paper in your eyes that measures

your tear production). He also could visibly see that my tear film was almost

completely gone and observed tear production while I blinked my eyes. I have

since had plugs installed in the punctums (the drain holes on the top and bottom

eyelids to keep more of my tears on my eyes longer and also use Restasis to help

increase my tear production. I also use Refresh Liquigel when necessary, also

per my optometrist.

in Texas

Sue <marysue@...> wrote:

Those of you who have Sjogren's, how were you diagnosed? Were you given

a specific test, or did the doctor just go by your symptoms?

I recently went to a cornea specialist to have my Fuchs' corneal

dystrophy and cataracts assessed. As a result, I will be having

cataract surgery soon.

They did all kinds of tests on my eyes. One of the technicians said

that she thought that I might have dry eye. So she stuck a little strip

of paper into each eye, said something about three minutes, and left

the room. She gave me no instructions. I thought that I was supposed to

keep my eyes closed, so I did. I waited and waited, and my eyes started

to be very irritated. I finally took the strips out, but my eyes were

still killing me. I got up and looked in the mirror and found that the

end of each strip was stuck firmly to my eyeball.

The tech did not come back in for 20-30 minutes. I told her what had

happened, and she proceeded to try to get the paper out with a q-tip,

which did not feel good at all. I said that those numbing drops were

not working anymore, so she put more in and finally got the paper out

of my eyes.

I have since learned that this dry eye test is called the Schirmer

test. I was supposed to keep my eyes open and blink normally. I would

have done this if I had been told to.

Sue