Hi. I know this has probably been asked several times. but I could not find a post that answers this question, so sorry if you're sick of answering it. I do not have a diagnosis for this condition - yet.
I saw my optician today and I mentioned about having dry eyes. He checked to see how much tears I was producing, and the result was 10. No idea what that means exactly though he explained that he said they were not painfully dry. He is more than welcome to this problem if he can tolerate it at this level of dryness and think it isn't painful lol
I am due to see my dentist in a few weeks and will mention the dry mouth and see what his opinion is.
I know my dryness isn't severe as I have enough tears to cry and they water when it is windy and I am very tired. Though my mouth feels incredibly dry, I have a bit of saliva, just not enough to be comfortable. I never realise how uncomfortable I am until I use a lubricant (Same for eyes, vagina and skin). I drink a lot - bet your shocked lol. Though it helps for a few mins it doesn't last as well as a lubricant. Night times are a nightmare as I am always waking up for a drink and to use more mouth lubricant.
My question is how dry is dry to have Sjogren's? I have read a few stories in magazines where the person could not cry and one were the person cried blood as the eyes had become that dry. I'm sure this is a condition that varies from person to person, but is that more the norm? I have stopped all medication that causes dehydration and still have the problems.
Thank you in advance for any info
Pixi
Did you have the Schirmer test done? Where they put strips in your eyes and let you sit for awhile? Someone here can probably share the parameters of the test or do an internet search. I can't remember what the cut off is for dry. (Braing foggy!)
Thank you for your reply. Not sure what the test was called. The optician placed some drops (I think) in my eye using some kind of a strip. He then checked through a machine to see how long it takes to produce tears. The answer was 10, he said normal is 15.
I have just searched for more info and found this link Dry eye tests (http://www.agingeye.net/dryeyes/dryeeyeseyeexam.php)
It was the Tear break up time test I had. It seems I am on the lower end of normal. That seems to be my life story ::)
Pixi,
Welcome, and how dry is dry depends on the individual. We are all different in the degree this disease affects us. I was 0 in both my eyes, with cornea abrasions and so many dry spots my ophthalmologist said they looked like someone had walked across them with golf spikes. After almost 1 1/2 yrs. on Restasis and lower plugs I am finally comfortable with my eyes.
I hope you can find a ophthalmologist that will listen and treat you accordingly.
Pooh
Dry is painful. 10 isn't particularly low, but it you hurt, it's too dry. The schirmer's scores don't often mean too much, but it'a some measure of dryness. I've had dry eyes since lasik 8 years ago. My schirmers are normally 1 and 3. I've been to numerous doctors around the country for my eyes. Not one suggested I might have Sjogrens. It was my idea finally and asked to be sent to a rheumatologist. But, I've only been diagnosed for 1 1.2 years. I have positive bloodwork at that point. My many years of low schirmer's tests never "signalled" to ophthalmologists? I may not have had Sjogrens all that time. Some folks eyes feel dry and hurt with higher schirmer's scores than 10. They may or may not have Sjogrens.
Lucy
Hi Pixi :)
When I had the Schirmer's test here in the UK I was told that 10 and below was dry. One of my eyes was 10 and the other was 1. After 2 years on Plaquenuil one was 18 and one was 6. Even with the score of 18 I still can't cry anymore. It just doesn't happen.
My mouth is driest in the morning. Then my top teeth are stuck to my lip and some mornings i have to prise my tongue off the roof of my mouth with a finger. Once i'm up and about it's not so bad.
Some people have other symptoms before the dryness actually occurs.
Take care - Scottie :)
Hi guys thank you all for your replies, very helpful. I don't think the test I had yesterday was the Schirmer's test. After reading the info in the link I left it didn't sound like the test I had was schirmer's test. From what I understand it was just the tear break up time test I had which gave me a score of 10. Of course since I am a newbie to all this I could be mixing it all up.
Scottie, my teeth stick to my lip too,I used to think it was because my teeth needed brushing, but it happens when they are clean.
Hopefully my rheumatologist will be able to help me.
I saw my dentist today and asked about my mouth dryness. He didn't have a kit to do it properly, but said he would just look to see. His verdict is my mouth is fairly dry, but not bad enough for my gums, cheeks and lips to stick to my teeth. Because I had my mouth wide open I couldn't tell him they do that a lot, (Why do dentists insist on chatting when your mouth is wide open with their hands inside?)they weren't right then as they had just been brushed. Oh well that's two down and just the rheumatologist to go.
Hi Pixi...I have found that taking large doses of fish oil tablets has helped my dryness issues heaps!!! My eyes are alot better than they were(during the day) and even my mouth and skin. I began last July by taking 2000mgs 3 times a day (6000mgs) and now I've cut down to about 3000mgs. I still get some nasal stuffiness at night but it's probably allergy and dryness :-\
I know some people have stomach problems with these tablets but they are worth a try.
Take care,
Lesley xx
Hi Lesley
Thank you for your advice. The problem is I am one of those awkward sods who is veggie and that includes seafood. ;D
In the absence (or in this case abstinence ;) ) of fish oils; flax seed oil, borage and evening primrose oils also provide omega 3 and 6 acids, in slightly different combinations.
Thanks for that info Linda. I take evening primrose oil and have used flax seed before. I keep meaning to buy more flax seed, but forget. I now have another reason to buy some.
Gosh, I tried to take the flax seed oil and I took a capsule one day and was nauseated the rest of the day. I think it was too rich for my gallbladder. Irish ;D
It is now 7 months and I am still no further forward.
I saw my rheumatologist in June. I had the usual blood test, ANA ect. I have to wait until I see him again, (which could be a long time), before I discover the results - my GP reckons he cannot find out for me ::) The last blood tests I had for SJS - around 2 years ago were negative.
Yesterday I saw an ophthalmologist who checked my eyes with a slit lamp. He said I have a dry eye syndrome, but reckons it isn't Sjogrens syndrome as my eyes are not severely dry - I did mentioned that I am dry everywhere. He also said that my tears vanish quicker than normal, but it's nothing to worry about.
Conclusion; I have a dry eye syndrome, my dentist says my mouth is dry. I have to use a vaginal lubricant and my skin is dry, yet it isn't SJS. What the heck could it be? I have cut out any medication that causes dehydration, I do not have Air Con and my heating is off. I just cannot think what is causing all these symptoms. :'(
Pixi
I really feel for you. I also have everything dry, but thankful that the rheumatologist diagnosed me based on physical symptons. I'm not on Plaquenil, because he thought that was 'a bit further down the line', but seeing as I have a history of epilepsy (many years ago) and Plaquenil is cautioned in people with a history of epilepsy, then I'm fine about that.
For me, at the moment, the vag dryness is the worst - although tomorrow it will probably be something different :( I use Replens, vag oestrogen and E45 cream as a wash. Today I also bought some Lanacome, because the dryness is causing terrible itchiness - I've just finished treatment for thrush, so don't think it is that. It's awful when your 'nether regions' are so uncomfortable isn't it?
Hope you feel more comfortable soon.
Kathyx
You can still have sjogren's and have all negative tests. Being dry in multiple places would point to that. There really aren't many things that would cause systemic dryness as you describe. Odds are, you're in the boat with many of us, who have negative blood, but still are symptomatic. If your Rheumy is worth his salt, he should be able to help you.
Thank you for your replies guys.
Kathy, I know that uncomfy feeling all too well. I asked the practice nurse if there was something longer lasting than Replens. She said there is nothing prescribed that I can have, but gave me a website to see what I can find. Knowing my luck, whatever is available will cost a small fortune. I'm already paying enough for Biotene products, without having to find the money for other lubricants... I do get the mouth spray and gel prescribed, but they will only give me one of each for a month ::)
Nathan, My rheumatologist is very good, but I see him for my connective tissue disorder (Ehlers Danlos syndrome) He is one of the few experts in that condition. I hope he is as on the ball with SJS. The main problem I have with him, is he is too popular and my appointments get pushed back for months.
PIxi
First of all i love your nickname. i have the same nickname at my work. my collegues call me pixie. Of course im not quite as delicate as a pixie. More like an elephant.
Secondly Sjogren's is a connective tissue disease as well. Your rheumy if he is worth his salt will know and treat you on symptoms.
Goodluck
Pud
Hello everyone.
I have a question for you guys? I am so dry I don't even know my numbers from the test. But my eye sight is so bad. I take restasis it works sometimes but i can't stand not being able to see clearly. It drives me crazy. My family thinks I am crazy I have to pull the TV up close then they say are you blind!!!! I think they forget now hard it is for me to see. I have Been to alot of eye MD doctors some days i can see perfect others i don't want to get out of bed. It is even hard to do house work. oh well my big question is I already take fish oil. but i want to increase it. I see Lesleyjoy takes alot. Do i have to ask the Dr first or just take it. I don't see my rhummy again until Jan. and I have been bugging my reg Dr too much he put me on Lunesta for my sleep habits. and it works great but the ins. compnay gave us a hard time. I kept having to call and get more samples. Well my Best friend is moving to Austria for 3 years so it looks like you guys are my new best friends. I love this site I feel like I know you guys I read the site every day. to see whats new. I am new to the Sjogrens I find it sorta weird. but i am positive. I am waiting for my SS to get approved. I know it will happen just have to be positive it will.
See ya Theresa
Theresa how much fish oil are you taking? I take 3000mg a day and im sure lesley does the same as well as a few others here. 3000mg is ok to take and should help with your eyes. Anymore and i would check with your doc
Pud
Pud
I am only taking about 1000 a day and 1000 vitamin d thanks for your reply
Theresa
Hi - I take 3000mg fish oil a day and there is someone in here who takes 6000. 3000 does it for me!
Take care - Scottie :)