What constitutes dry mouth/eyes?

[TOB]

Hi all,

I am currently in the process of being diagnosed with syspeced Sjorgrens and or Lupus. I wouldn't consider myself has having a dry mouth or eyes but have noticed that I experience the following and wondered if  would put them down to dry/eyes mounth? I am going to see the rheumy on the 9th July and just want to know whether to mention these symptoms.

1. coughing fits - I suffer with bad acid reflux (on Nexium 4pmg 2 x day) which makes me cough. I know when it is acid causing the sudden coughing as I can feel the buring in my throat. However, I have noticed that I get coughing fits and it is almost like my throat is too dry to swallow and it feels like it gets stuck together. My mouth has saliva, it does get a little dry but I can produce some 'spit'

2. Constant thick clear 'phlegm' (or is it sticky saliva?) at the back of my throat but no chesty cough.

3.  Feeling of a lump or like something is stuck in my throat and having to swallow quite frequently. I have had an endoscopy and there is no lump, I think it is the thick saliva or maybe lack of.

2. Gritty eyes, very tired eyes which can be quite red, itchy eyes. However, I seem to have tears when I want to cry!

3. Eye sight changed over last 2 years. I have quite quickly become 'long sighted'. It seemed to almost happen overnight but I am not sure if that is becasue I use a PC during the day.

Anyone suffer similar symptoms?

thanks

[Linda196]

TOB, all of these can be caused by dryness. The insidious nature of slow onset SjS gives us time to adjust to the dryness, so that after a while, we think of what we feel as being normal, but when there are actual measurements of tears or saliva we fall short of normal.

I sometimes think that, given that normal saliva production is 1-3 ml/min, and it takes me about 5 minutes to produce 0.1 ml, I'd drown if my saliva was "normal".

Tears are the same, I think if I tested 10 (normal) on a Schirmer's, instead of zero, my face would constantly be soaked and tears would drip off the tips of my nose and chin!

Many people with SjS can still produce "emotional" tears (wish I could) but the constant flow of lubrication isn't there, and the watery tears evaporate quickly.

[Wynter]

TOB,

I have experienced many of the same dry mouth/eyes symptoms as you before my mouth went NOTICEABLEY dry. For several years, I didn't realize my mouth was dry because it didn't hurt and I didn't "feel" thirsty, even though I constantly was drinking something. I also didn't realize my eyes were dry because they didn't feel irritated, only towards the end of the day after working on a computer all day. My dryness developed slowly and crept up on me, which I think happens to alot of Sjogren's people. Are you having a problem with your teeth like the dentist telling you have tooth decay or having more than the normal amount of dental procedures done. A few years prior to my symptoms getting worse, I started having dental problems and I couldn't figure out why. Now I know.

[gsmraxe]

My eyes get gritty throughout the day, but they will water up on me and crying is no problem.  I don't have sores in my mouth, but I am thirsty 24/7.  I don't know if this would stick me in the SJS category, but I tested positive with a blood test (2 times in fact).  I am the only one I know that has to have something to drink all the time, so the problem is there, I just don't consider it that bad.

[Scottietottie]

Hello TOB 

Welcome to Sjogren's world.

Have they tested your thyroid? My thyroid went wrong and I felt like I had a bit of bread or something stuck in my throat. The feeling went away when I got on the right dosage of thyroid meds.

I have a dx of SjS and I can still make spit although I wake up with an incrediblt dry mouth in the morning. My eyes aren't very dry either. They used to feel gritty but it turned out I had blepharitis and a course of steroid drops and good eye cleansing routines helped tremendously. Taking fish oil seems to help too.

General pain and fatigue - not to mention brainfog is worse for me than my mouth or eyes.

Take care - Scottie   

[TOB]

Thanks to you all for your replies. It really does help when trying to understand this thing!

Scottietottie, thanks for your kinds words. My thyroid has been tested and appears to be normal so I am not sure what causes the throat sensation. All I know is that it is very annoying and this and the whole coughing thing really gets me down as I have had it for over 6 years now.

I have my second appointment with the rheumy at the begininning of July which I am dreading. The last one he really didn't seem to care much although I have had positive ANA, positive SSA (Ro60) and higher than normal RA and described my symptoms of being tired, stiff muscles, etc, etc. He baiscally told me that it was possible that I would go on to develop Sjogrens and or Lupus overlap (don't the tests results mean there is something going on?)  and to go away and "come back when it is cold so I can look at your Raynauds and see if you need treatment for that". That was basically it! No mention about how SJS can develop (or not in some cases) or what to expect in the future etc or explanation of what it is!

Sorry about my rant above but what I really wanted to ask is how often should I request blood tests to see if anything is changing? My ANA was 640 speckled and the SSA was positive along with two low positives for another test that I can't remember. Should I be asking to have the tests regularly? And should I ask for the schrimer test?

Talking of Raynauds, I am sitting at my desk and my desk thermometre reads '22 degrees celcius' which isn't particularly cold and my hands are turning white and are freezing! Does anyone else experience this and not so low temperatures?

thanks again to all.

[eyeamdry]

It's best to not be really "interested' in your Schirmer's testing and numbers.  Many times your feeling does not match the numbers.  You can have high numbers ie. 8-10 mm. and your eyes can feel dirt dry.  You can also have 0-2 mm. and your eyes may not hurt.

I've consistently had zero Schirmers in both eyes.  One burns like the fire of h-ll and the other doesn't hurt as long as I keep it watered.  Your test could be way off one day because of a cold (watery eyes), or allergies etc.  Treating the symptoms is the best thing, because of bunch of numbers (on tears anyhow) may not mean much.  Lucy

[missyb]

The Dr asked me if I had a dry mouth, and i said no, then he asked me to eat a saltine cracker with no water to drink, try it and see what happens  i was shocked I couldn't do it. Also, I thought I had the opposite of dry eye b/c I often have tears flooding and I look like i am crying for no reason (very embarrasing at times!people always asking if I am "ok" or if something very slightly upsetting happens and it looks like I am crying over it!  ) that one I hate the most!)The eye dr said I had auto immune related dry eye, I was like huh? She said there are two kinds of tears, moisture and crying, and if you have dry eye, you are out of moisture tears and the crying tears will flood the eye to moisten it. The eye dr told me that before I found outit was Sjogren's,but the rheum told me that was correct.
Missy

[dbab]

Similar story for me as well.

When I went to my opthalmologist for the first time, I was going in for my baseline exam because they were starting me on Plaquenil because of the pain and fatigue.  I just knew I didn't have dry eye.  Well my schirmer's test ended up being a 3 in one eye and 4 in the other.  Not drastic however it constitutes dry eye which I swore I didn't have.

About a year ago, went to my rheumatologist and at that time I had to switch to a new one because of my insurance so she did a complete workup on me.  She asked if I had dry mouth and I said "no way."  She took a tongue depressor and pulled my cheek open and said yep I have it.  She said the saliva is supposed to pool near the gum when she did that as a natural reaction and in fact I had very little saliva (no pooling).

Sometimes our bodies get so used to something that we consider it normal.  But what is normal for us may not be normal for the rest of society.  It's funny because that was the way with a lot of my symptoms.  Never knew they were symptoms before my doc pointed them out, just thought that was just the way I was LOL

[kathyl]

When I was being diagnosed I felt they did not ask the right questions.  I answered NO to dry eyes and dry mouth.  They should have asked:
What is your favorite food?  That would be soup.
Can you swallow a baked potato without water?  No way.
Do you ever feel like there is a piece of sand or an eyelash in your eye and you can't get rid of it?  Yes
How many bottles of eye drops do you have by your bed?  four or five

Everyone is right, I got used to the problem and no one described what it felt like.  So it really delayed the diagnosis.  I had to get worked up for MS and have a bunch of MRI's.  Even with positive blood work it took my developing pleuritic chest pain before there was a clear diagnosis.  Good luck.
KL

[laney]

hi,

just started myself, today, here.  interesting, tho, as I followed the link to the legislative action site. it turns out to be related to other autoimmune things.  I followed some information links and looked at symptoms for other autoimmune things.

some mention cold feelings in the hands, etc.

other having trouble swallowing.

lots of information there, if this helps.  even has some of the tests they use and why. I bookmarked it for myself fmi.

thanks for posting. makes me feel right at home.

laney