Do you get "used to" the dryness? Newbie.

[Dennis]

I am really struggling with dryness in my mouth, eyes, and nose.  My eyes are not so bad, but my mouth and nose are driving me to the point of insanity.  I am having a very hard time sleeping because of my nose.  While not formally diagnosed, my doctor did prescribe Evoxac, which helps to some extent with my mouth.  I have been living with these symptoms for only a few weeks, but I am having a hard time imagining getting used to this dryness.  Do you get used to the sensation, to some extent?  At least to the point where it isn't consuming my every thought?  Also, does the severity of the dryness wax and wane with flares, or is it fairly consistent?  Any advice you might give would be appreciated.  Thanks.

[JJ]

With all of us there is different severity in symptoms..and as for me i haven't gotten use to it

but have picked up a few tricks here and there that seem to take the edge off...sometimes

it is worse than other...but i couldn't say u ever get use to it...however it doesn't consume me

all the time. I guess you learn to roll with the flow. Welcome and also I think getting a humidifier

for your nose will help...but you may want to wait and see what some of the others have to say.

JJ

[lighthouse33]

Hi Dennis,

I find that I can do things to make it livable although during a flare all bets are off.  I think its always going to be there.  Here are some products that help me:

Nose:
Simply Saline Nasal Mist - my dad had a chronic sinus infection plus sinus surgery.  His ENT recommended it.  I got a can and have fallen  in love with it.

Mouth:
Biotene Dry Mouth Products along with brushing right after eating have helped with the throat and mouth.  I prefer their PBF Products (Plaque Dissolving Biofilm), toothpaste, mouthwash and gum.  Will be trying out their new mouth spray soon.

Eyes:
Still a work in progress.  I like the Theratears Preservative Free Drops and Liquid Gel.  Just started taking flaxseed oil and have been on fish oil going on my fourth month.

[ohiolady]

Dennis,

I had severe dryness of the eyes, nose and mouth.  And, it consumed my every thought and I was miserable.  I had sores in my mouth, my tongue burned and I could not swallow food until I started the Evoxac.  My eyes were just as bad.  The Evoxac helped and I have plugs and use Restasis along with Thera Tears, FreshKote and Genteal Gel.  Salt water is good for the nose. 

Now, the good news, about a year and a half after getting Sjogrens, I gradually started to improve.  My fatigue improved and my dryness began to improve.  Even the dentist and hygienist noticed a few weeks ago at my check up.  I have days that are drier than others but I do not focus constantly on the dryness.

There is hope that you can improve.  It may take awhile but don't give up hope that it can be better.

Anna

[gsmraxe]

Dennis,

You might want to pick up a humidifier to run at night while you sleep.  The Neti Pot or Neil Med bottle might help for daytimes sinus issues.
I've gotten used to the dry sinuses, mouth and skin (my eyes aren't that bad) over the years, but in the summer when it's dry, I struggle.

Hope you find some things that help you out.   

[Redetha1]

 For me the dryness has kind of become who I am, although I must drink and use all the products, I deal with it except when I am having a flare.  At that time, it is the "pits" and I just push forward as best I can.  I have had bronchitis twice recently--but not runny nose.  Maybe that can be considered a good thing with the dryness for me.  Having a cold seems out of the question.  It is kind of a funny situation.  Anyway, there is really no getting use to anything-- just learning how to deal with it.  Wish I could be more positive but getting a humidifier helps and using products helps.    Hang in there and come here often to check out ideas and find out about new products and research.  It is a great place to come.

[ohiolady]

Yes, having a cold is very odd.  My nose barely produces any mucous even though my throat is sore and I'm achey with all the cold symptoms.  That is a sooooooooooooooooo odd but I've noticed that I've adjusted to that, as well.

Anna

[heyamy]

Dennis,
You just have to try things and find what is best. Here's what I use:

sinuses: saline irrigation every evening pretty much solves everything although occasionally I will use Nasarel, which my doctor says is the least drying.

mouth: mine really improved after I stopped drinking wine. Recently, my mouth has constant ulcers which I think is from tea. I hope I don't need to stop drinking it too.
I like Oasis mouthwash, which I use each night and find it really, really helps. When I have the nighttime tickle, the Oasis mouth spray really helps. Sugarless gum and candy helps keep my mouth moist during the day, although some of the sour stuff hurts. I find that water is the absolute worst - it seems to rinse away anything holding the moisture in my mouth. (I use prescription toothpaste to prevent cavities - the dentist has been pleased at how it's helped.)

eyes: plugs help a lot, I stopped Restasis as it was no longer helping and the burning took forever to stop. I don't like any drops at all - they work immediately and then it seems my eyes get even more dry. Maybe the drops wash away any oils. I'm just mostly upset about my eyes and because of the dryness, I can't focus very well. It's extremely frustrating.

Good luck!
Amy

[Dennis]

Thanks for the advice.

[Patze]

Hi Dennis,

With me it's the dry nose and eyes, they can get so dry that I just want to cry.  When my sinuses flare (not a real cold, but they swell so bad that it's like I have a massive sinus infection), the mucus mostly goes down my throat, and it can get so thick that I've about chocked several times.  I'm on my third ENT and I hope that this one sticks, I'm getting tired of these doctors that don't want to scratch the surface to find out what is really wrong, not just the easiest diagnosis possible.

I see that you've gotten a lot of good advice and there's not much I can add.

Hang in there and I hope to chat with you soon.

Take care -

Patze

[Nancy5217]

I too have recently been diagnosed and I like all the suggestions. I am a bit overwhelmed at this point and afraid I will never get use to this. In the last 3 months I have lost 28 pounds cause I can't eat cause of the dry mouth. I carry water constantly and just got some meds. I look forward to all your advice and help.

[Katybarstool]

Hi Nancy

A big welcome from me. The dryness is horrible but, if my experience is anything to go by, it fluctuates. My eyes have been dry for years, my nose relatively recently and my mouth somewhere in between. However, some days they are really good, and I only use topical treatments. Don't give up hope that this is how you will always feel.

You will get lots of advice and empathy from our Sjoggie family, so keep in touch.

Hugs
Kathyx

[perry]

HI Dennis,
I've had the dry eyes and mouth for about 5 months. I've become a regular gum chewer! especially the spicy kind that really wakes up tha saliva. It really helps. I started fish oil and plan to add flax seed oil and help seed oil. They tell me that this takes time to work. I've also noticed that I want more "wet " foods: soups, fresh fruits and veges, juicy fish. I'm still learning, too. What a chore!

[Patze]

Hi Nancy,

Let me also welcome you to the SJS World!  Please do look around as there are a ton of topics and oodles of information that you might find interesting.

I know it can be daunting, but don't be shy if you have any questions as there's usually someone about.

Take care -

Patze

[KJ]

Hi,

I'm sorry to read of your discomfort (if there were an "empathy face" icon I would insert here), I hope you find some relief soon. 

My dentist warned me against anything with acid, even if sugar free, as it can cause severe decay.  I got a good scolding the other day for sipping on diet coke.  When he told me to stay away from fresh lemmons and limes even, I scolded him for raining on my parade!  I sure wish my md's were as friendly, and caring as my dentist.

The burning in my mouth is way down now that I have meds for thrush, but now I really notice the dryness.  Have you been swabbed for possible thrush?  I was told by many docs that I did not have it because my tongue looked normal.  Just a thought.

I started saligen a few days ago which has helped some, however, my saliva seems to be "watered down".

I am new to all of this as well, and I am glad you are here.

Kellie