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
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!
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.
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!
Quote from: jmkboyer on October 12, 2011, 06:18:42 AMIt 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! :o
Bucky
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.
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
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
Congrats JMK on your diagnosis and I hope that the Plaquenil arrives soon!
Do you use a CPAP machine by chance?
Patze
What Relative Humidity setting is recommended? I know too much humidity and you have problems with dust mites and mold.
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
Quote from: jasonsmith on October 12, 2011, 06:57:40 PM
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 (http://www.epa.gov/iaq/pubs/humidif.html)
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. :P
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
Quote from: Cheryl on October 13, 2011, 07:09:38 AM
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.
Quote from: jmkboyer on October 12, 2011, 06:18:42 AM
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
I forgot to answer the rest of your questions, I was so busy congratulating you on your Dx. LOL
I used to have sleep apnea and one of the things I truly miss was it was a personal humidifier too - in other words, while it blew air to keep my passage ways open, it also blew just the right amount of moisture (adjustable). I don't miss being tethered to that ugly machine at night nor do I miss lugging it along on trips filling half my suitcase - but I do miss the humidification directed to exactly where I needed it. If your snoring is so loud that your poor DH had to relocate to sleep, you should ask to have a sleep apnea test to see if you have it - it's a serious and even deadly problem that needs to be treated if you do suffer from sleep apnea. Your PCP or ENT can order one. I now use a Crane humidifier - it's a blue penguin LOL - it was on sale at Target. When I travel, please don't laugh, but I'll wet a wash clothe and wring it out so it's damp - and sleep with that on my face at night for the extra humidity it adds.
My Opthalomologist told me to keep my Restasis in the fridge and I find cold eye drops easier on the eyes - actually soothing. Like the others, if my eyes are toooooo dry, I use otc drops first - but I try to let a good 15 minutes or so go by because I don't want to dilute the Restasis.
Quote from: stephL on October 12, 2011, 07:49:02 PM
Quote from: jasonsmith on October 12, 2011, 06:57:40 PM
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 (http://www.epa.gov/iaq/pubs/humidif.html)
Well, I was planning on getting a full room humidifier for my bedroom as my room/house feels real dry. I got a Hygrometer and found the relative humidity hangs right around 55% in my bedroom.
So, I guess it would be better to get a small humidifier to blow at the head of my bed vs. a full room humidifier?
Quote from: jmkboyer on October 12, 2011, 07:16:03 PM
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
I do but I hate to say this, this past year I've been VERY inconsistent with it's use. I keep telling myself to get on the ball but I keep finding myself sleeping upstairs in my recliner more and more and it's downstairs.
Oh my Nara, you keep finding yourself sleeping more and more in your recliner upstairs and it's located downstairs? Okay, thought I was missing something there...well I am, but you didn't hear that from me!!!! ;) :D
Can you get a second machine? I have two just because I find myself sleeping in a couple of different spots at night and I'll never know until I lay down which one I'll use (it takes a toll on my supplies for them, but eh, it could be worse).
What kind of mask are you using? I like the smaller the better, less "blowout's"...I have enough trouble sleeping.
Patze
Quote from: Patze on October 15, 2011, 03:08:26 PM
Oh my Nara, you keep finding yourself sleeping more and more in your recliner upstairs and it's located downstairs? Okay, thought I was missing something there...well I am, but you didn't hear that from me!!!! ;) :D
Can you get a second machine? I have two just because I find myself sleeping in a couple of different spots at night and I'll never know until I lay down which one I'll use (it takes a toll on my supplies for them, but eh, it could be worse).
What kind of mask are you using? I like the smaller the better, less "blowout's"...I have enough trouble sleeping.
Patze
I could easily bring it upstairs but just never thought about it until I was way past gone. I use the blu-gel mask but wanting to try the nasal pads. If I tuck the tube under the covers with me and set it to 1 1/2 - 2, then I don't have any condensation issues.