Thanks Raglet, and yes, I do not want another syndrome, I have enough. However, I do want this dryness to stop.

The only med I am on is Wellbutrin, but the dryness was well underway before I took Wellbutrin. Some tell me it's the CPAP. My sleep doc had me set the humidity to high, which I did. That hasn't helped. My mask is not blowing in my eyes, that's another opinion. I use nasal pillows, I just can not tolerate the nasal mask and I know I could not handle a full face mask. Nasal pillows never cause air around my eyes. Some say I may be sleeping with my mouth open, so we ordered a chin strap...about drove me nuts, and it kept making my nasal pillows leak. The last few nights, I have noticed my mouth is even dryer, and I can't be sleeping with my mouth open, because even my lips are stuck together, no need for tape! Which by the way, my doctor is totally against, and I will not try because most tape peels my skin off.

I honestly feel the dryness is not caused by the CPAP, maybe aggravated, but not caused. I had the dryness long before I had the CPAP.

Always something, isn't it???

Just another update on this issue of sicca syndrome, and sero-negative Sjogrens. I had that elevated CD4/CD8 ratio, which ended me up in a hematologist office, which ended me up with a CT with contrast....and pulmonary fibrosis in my lungs. I am seeing a pulmonologist and rheum, PFTs are scheduled, and I assume more tests. There may be a bottom to this somewhere.

This is looking more like Sarcoidosis. I did a bit of research on this, and found initial info I saw was really cursory. The deeper you dig, the more you find. Sarcoidosis has a lot in common with Sjogren's except the positive blood work.

Well, I have learned to take things one day at a time, and not expect a lot from any given finding. Again it takes a good doc to put things all together.

I certainly hope you do get to the bottom of this. It's not fun not knowing what's going on, and even worse, having a doctor tell you there is nothing wrong, when you know there is.

Hi I can relate to this a lot. I am on my 9th eye specialist and am worse from dry eye and the pain it causes is unreal. This along with dermititits,constant infections,dry mouth though this is the least etc.I have been tested for sjogrens as well and don't have it. I too am getting horrible headaches and pressure. Anyhow like you have the humidifier and now am working on my omega cause I have been on many meds that either have done nothing or worsend. I think you also have rsd? I am going to another pain specialist but the last said that it may be related to this but who knows. I am looking to get another mri of my brain as well. Let me know if you find any help and I will too.

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Hello,

I am new and, frustrated but I can still smile. My opthamologist spoke more openly about sjogrens than my rheumatologist. It affects not only our eye, nose, ears, throat, teeth, also our lungs, and kidneys, and gives a lot of fatigue when highly symptomatic.

I will eat crackers multigrain and, make sure a glass of water is near me!
My teeth well need to see a Dentist soon...not to bad but, medication like prednisone is also bad for our teeth.

I know Sjogrens is in our Genes and, who will develope it...who knows? I have a family with Lupus, Juvenile RA, Vasculitis, Diabetes...So I think it all depends on just how strong our gene is; does this make sense?

I have been tested positive for Lupus, Sjogrens, Seizures, Depression (well I do not believe this anymore..meds are being decreased...I do what I need to do to feel better). Raynauds, carpal tunnel, Communicating Hydrocephalous Normal Pressure, fibromyalgia...but ya know looking at me you would think their is nothing wrong with me. A lot has to do with avoiding stress; well excess stress & negative people, educating yourself, and finding another Doctor if you are not happy with what he's telling you to do...especially when you have done your research.

Hope this helps & I hope to hear from someone!

What has me baffled is My neurologist just told me NOT to sleep as I do he wants me to sleep when I get sleepy and wake up at 6:00 a.m. everyday. I will try it...but I do not think this will work. I am also wearing a heart monitor and it wakes me up at night. You know Doctors should consider ALL WE ARE DIAGNOSED WITH, but a good Dr. these days is difficult to find.

Hope all have a nice day!

My sleep doctor told me we must sleep on a regular schedule, to bed the same time, and up at the same time daily. When you go to bed early one night, then you probably wake early the next morning, then your day is off to a yawning fest.

I force myself to stay awake until 11 pm every night, and generally wake around 6. It's getting better for me, I was waking around 4:30. Taking naps, and sleeping erratically will cause fatigue. Sometimes though, you can hardly drag yourself around. It's a difficult process to change. After 6 months on CPAP, I am still trying to get "average".

I find the dryness isn't as bad this time of year. Winter, with heater fans going is very difficult for me. At work, we have forced air heat, and I have more dryness there, at home, we have hot water heat, with baseboard heater, not so bad here. BUT, now that the dryness is getting a little better, the seasonal allergies are kicking in.

Hi Cyclops,

I stumble on this post while looking for information about Sjorgren's.

It interests me because of your pulmonary involvement. My CT scan showed fibronodules in my lungs. I will see my pulmo about the result next week. Initially, my major problem was the neurological pain. Then, my shortness of breath that led me to the pulmonologist. While waiting for all my next appointments with the doctors, my breathing is getting heavier. Its funny how a new illness can make the current problem seems bearable. I still have my PN pain and it still bothers me but with the new lung issue which makes me always breathless even doing simple chores, it seems the PN pain seems tolerable.

The rheumy does not want to categorize me as with Sjorgren's because my tests are all negative.

I will appreciate your update.

Cyclelops hasn't posted in months, so she may not reply. Just thought you might want to know.

Thank you en bloc for letting me know.

I am having serious SOB. My husband borrowed a nice movie from Redbox and I just watched it halfway...

The Symbicort not helping me.

Thanks again.

Sounds like you need to call the doctor. Maybe they need to move your appt up.