Woo Hoo! A diagnosis!

[jmkboyer]

It just occurred to me that it's kinda sad that I'm so excited to officially have Sjogren's.   

I saw a new rheumy after spending a year with a worthless one.  He immediately dx'd me with primary Sjogren's and fibromyalgia.  I start Plaquenil as soon as it arrives from my mail order pharmacy.  I've been using Restasis but it burns so badly that the cure seems worse that the problem at this point.

My main question is, how do you get your sinuses moisturized without a humidifier?  I use saline solution regularly.  My bedroom is too large for a portable humidifier to work properly.  Does steam work for anyone?  I've thought of buying one of those personal steam-machines that you can stick your face into.

My husband has been kicked out of bed twice this week because of my snoring (which I never did before this).  Would seeing an ENT help?

I'm glad to be back here with my friends.

MB

[Meld256]

Hi MB,

No, I know what you mean about relief to finally have an official diagnosis after searching for answers for a while.  It can be exciting to know that your concerns are being listened to and treated!

Might want to talk to that wonderful new rheumy about the Restasis and if there's other options. You can also use an OTC drop about 15 minutes after it and see if that helps the burning.

Well, sinus moisturizing...I don't have the problem with that some others here do, but you should get some answers. An ENT might be a good idea. 

Sjogren's and Fibro. can be a challenging combo, I know. Sometimes it's hard for me to know which thing hurts from which issue.    The weather change is playing it up this week.  Yuk...
I wish you good luck with the Plaquenil.  It has helped me quite a bit.

Good to see you back!

[Surroundedbylove]

Even with a large bedroom I've used a humidifier for years.  The good ones have a directional thing on top that can direct the humidity stream where you want it so that it can be sent in the optimum direction for you as you sleep.  In other words, you get the humidity even if the entire room doesn't get it.

[gold55]

I too sleep right next to the cabinet that my humidfier sits on.  I use that Walgreens saline in my nose when needed.....I used to use nasal spray not knowing I was already dry and that's what was causing my stuffiness..yikes!  My husband installed a humidifier in our heating and air conditioning system....it works when the air or heat click on blowing moisture with the air/heat.  Don't know how much it is adding to the dryness in AZ winters but it was worth it to try.  If the heat isn't on I can turn on the auto fan and it supposedly blows moisture but not like a humidifier where you see it coming out of the vents.  I've really noticed a big difference now that we've gone from 100 degree weather to 50's at night!

[Bucky]

It just occurred to me that it's kinda sad that I'm so excited to officially have Sjogren's.   

My main question is, how do you get your sinuses moisturized without a humidifier?  I use saline solution regularly.  My bedroom is too large for a portable humidifier to work properly.

Hi MB - welcome back!

It's kinda weird to tell someone congratulations on your Sjogren's dx - but, you know what I mean.   

Maybe putting a small humidifier on your nightstand next to you would help.  I have this adorable green frog, cool-mist humidifier by Crane that I use (they come in other animal shapes too - would work great in a child's room . . . hey, I'm just a kid at heart  .  Especially, with winter coming up and the heat comes on, it helps with moisture in the bedroom.  This humidifier has a dial that you can pick the amount of humidity you want.  It's very quiet too.  Some of them I've heard sound like a DC-10 landing in your bedroom!   

Bucky

[Skylar]

It is something to celebrate - having that label on your disease helps validate all that you have been suffering from and gives you some small sense of control and now you can find resources like Sjogrens World to support you. Congratulations - this is an important day.

[love2teach]

Hi MB,
Congratulations! It is definitely a relief to get a diagnosis and to be taken seriously.

I remember Restasis burning my eyes when I first started using it. I don't remember how long it took but it eventually stopped stinging and burning my eyes. I know they became more comfortable as my eyes became less dry. I realize Restasis does not work well for everyone, but I have had good success with it. I have also found that it helps to refrigerate all of my eye drops. They are much more soothing that way.
Best wishes

[jmkboyer]

Thanks, everyone!  I will look into getting a smaller desktop humidifier.  That's probably the best option.  I knew I was going to be in trouble when my sinuses were telling me it was December in the middle of a humid Nebraska summer!

I'll keep trying with the Restasis.  I use drops 15 minutes after but the burning is still awful.  My eyes are so sore at night that I can't force myself to use the drops.  I still do in the morning.

I'm so glad you all can understand the importance of a diagnosis.  Not even my husband gets the relief that comes with being "official."  He's been a lot more understanding, though!

MB

[Patze]

Congrats JMK on your diagnosis and I hope that the Plaquenil arrives soon!

Do you use a CPAP machine by chance?


Patze

[jasonsmith]

What Relative Humidity setting is recommended? I know too much humidity and you have problems with dust mites and mold.

[jmkboyer]

Do you use a CPAP machine by chance?

Hi Patze--

No, I've never had a snoring/apnea issue before.  It's always been my husband who has had to have his sinuses scraped out!

MB

[stephL]

What Relative Humidity setting is recommended? I know too much humidity and you have problems with dust mites and mold.

50% is the max humidity you should have indoors, Jason.

http://www.epa.gov/iaq/pubs/humidif.html

[Babs659]

Ayr Nasal Gel for dryness at night.  Put it on a q-tip and right up the nostrils about a third of the way up.  Don't know if it helps snoring.

[Cheryl]

JMK,
To prevent the burning from using Restasis, I use an otc drop first, wait a few minutes, and then use the Restasis.   It only burns my eyes if they are really dry, so moisturizing first helps.  I hope this suggestion works for you. 
Cheryl

[jasonsmith]

JMK,
To prevent the burning from using Restasis, I use an otc drop first, wait a few minutes, and then use the Restasis.   It only burns my eyes if they are really dry, so moisturizing first helps.  I hope this suggestion works for you. 
Cheryl

Thanks. I'll keep that in mind.