Please help newbie

[happylife]

Hi,

Since 5 months i have dry eyes (schirmer 2 values - left eye : 6, right eye 6) severe dry eyes. Currently on restasis, eye drops (10 times a day) and eye gel (2 times a day).

Since 3 months i have dry mouth at night - lips stick to my teeth. tongue sticks to my roof. i use baking soda mouthwash and oral gel at night. During day time my dry mouth is mild. i am able to eat food without sipping water.

Insomnia since 3 months : Tried zolpidem 5mg, that only gave me 3 hours sleep and bad hangover. Now using melatonin 6 mg...it gives me 1 to 4 hours sleep....but no hangover.

ANA factor negative, RA factor negative (value = 11, where 15+ is considered positive), SS-A and SS-B negative.
CRP and ESR negative.


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But rhumy told that this is not sjogrens !! i cannot believe. i have such dry eyes and clear dry mouth at night.....i think this is a clear case of early sjogren (its been 5 months since my first symptom of dry eyes or mouth started).

Kindly advise, if your early days sounded like my experience above?

Also please advise how to solve the insomnia?

Thanks in advance.

[Joe S.]

A polar fleece Mumps scarf will help with moisture and reduce breathing issues while you sleep. I also practice sip, swish, swallow from my water bottle.

By the way, Welcome to the forum. 

[Kathy57]

HappyLife,

I have seronegative Sjogrens.  Not everyone has positive blood work.  Do you have any fatigue or pain of any kind?

I'm not diagnosing you because I'm certainly not a physician, but just because you are seronegative does not rule out Sjogrens, in my book.  Thank God, my Rheumatologist diagnosed and treated me. 

I hope you can get more informative answers and good  treatment.  There is a wealth of information here and you can look up previous posts on subjects. 

Welcome,

Kathy

[Carolina]

Dear Happylife,

fortunately there are LOTS of solutions to the problems we suffer.

I too have always been sero negative for Sjogren's BECAUSE the cause of my Sjogren's doesn't show up with an autoantibody test.  My defective Immune System had carried out many attacks on my organs/systems, and the first serious attack was on my moisture system.  As my Immunologist says:  "We use the tests we have, not the tests we need."

You should take one of the RX medications to increase your saliva if you can tolerate one.  I take pilocarpine (generic Salagen) and could not manage without it.

Yet every time I see a doctor who is looking at my mouth/throat (Otorlaryngologist, dentist) one of the first comments is "your mouth is VERY dry.

WELCOME, you ask your questions, express your concerns, change your doctor(s) if necessary/possible.
We have all been dealing with this for a very long time.

Remember "your mileage may vary" since we are all very different.

Regards, Elaine

[Dryguy]

Negative results from blood tests are not conclusive for Sjogren's. You need a lip biopsy as the final and conclusive test for Sjogren's.

I, too, had negative ANA, SS-A and SS-B test results. My primary care doctor told me I did not have Sjogren's. My neurologist decided I needed a lip biopsy and referred me to a specialist where the diagnosis of Sjogren's was made. It took TWO years from my blood test to the lip biopsy.

Take comfort in the fact that some doctors are not up to date on the latest medical info and can be wrong. Get a second opinion.

[araminta]

A lot of your symptoms sound very familiar to me.   Have you tried Xylimelts for your dry mouth at night?   Sugar free chewing gum is good during the day.   I use organic castor oil in my eyes at night and even sometimes use a little during the day, as well as Hyloforte eye drops.

You will find lots of posts here about insomnia, the best thing I have found is progressive muscle relaxation - you can google it, it's a routine of tensing and relaxing different muscles, focusing on how they feel when tense and how they feel when relaxed.   It doesn't work every time of course, but I would suggest you try it.   Mindfulness and meditation can also help you to feel more generally relaxed.