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Eyes, sinus, mouth, lips dry suddenly

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  • Eyes, sinus, mouth, lips dry suddenly

    Does anyone have any idea what could cause widespread dryness? I've tested negative for autoimmune several times.

    But did notice a few years ago when I would lay down to sleep, that I could notice my eyes, sinus, mouth, and lips feel kinda dry. It didn't bother me, but just noticable within 5 minutes of laying down. Then when I would wake up, my eyes were kind of dry, but was gone right after I got up. Also noticed for a year or so before the dryness started, that my sinus mucus production went away. i.e. I used to blow my nose all day long, but then the mucus went away to where I didn't have to blow my nose anymore, and no more mucus build up when sleeping.

    One day I woke up with eyes on fire. Shirmers tests was 0. And ever since had problems with dry eyes bothering me. A couple of months later on the same day, my siuses and mouth dryed up and started bothering me. That was rough for a couple of months, then my sinus was better here and there, and my saliva came back, but it would get dry here and there. Then later also noticed my lips feeling dry alot.

    The Doctors won't do anything. But was wondering if anyone had any ideas what could be causing all the dryness? Especially the dryness that started bothering me started suddenly. Makes me think neurological.

  • #2
    I test negative for Sjogren's (many do) but had a positive lip biopsy. If your problems continue undiagnosed I would insist on the biopsy. It left me with a permanently numb spot on my lip but was worth it to get the diagnosis. The spot doesn't bother me I only notice it if I touch my lip....F/G

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    • #3
      Originally posted by farmgirl View Post
      I test negative for Sjogren's (many do) but had a positive lip biopsy. If your problems continue undiagnosed I would insist on the biopsy. It left me with a permanently numb spot on my lip but was worth it to get the diagnosis. The spot doesn't bother me I only notice it if I touch my lip....F/G
      Nah, that's too invasive. Plus if they don't find anything, it doesn't mean anything as you can still have it. If it did show something, it wouldn't change anything treatment wise as they'd just treat symptoms.

      I've had a bunch of other health problems for over a decade like progressive weakness. So probably something with the nerves. Did have an H1N1 vaccine a few years ago, so not sure if that could have triggered something.

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      • #4
        I agree, it was invasive but to me it was worth it. Although not 100% accurate it is much more conclusive than the blood tests which are something like 40% false negatives. That is huge.

        The big reason I wanted a yeah or nay is that there is more to Sjogren's than dry eye and mouth and it can explain other symptoms that I may develop in the future. Just one example that I can think of is that I woke up from an IV sedation procedure and was in an absolute panic state as I felt like I couldn't fill my lungs, I felt like I was drowning even though my O2 saturation level was 100% at the time as I had O2 being administered. I know now that I need to have humidified air if I ever have anesthesia again as my lungs and throat had become dry from the O2 they were administering and I had trouble restarting them.

        Throat: A breathing tube between the vocal cords or breathing mask in the back of the throat will be used during general anesthesia in most cases. The lining of the throat is exceedingly sensitive and having a dry throat will make the usual sore throat after anesthesia even worse. In addition, the throat can swell a bit if it is very irritated which makes it harder to breathe after the tube is removed. You can ask the anesthesiologist to make sure the tube or mask is very well lubricated. Having the oxygen humidified in the recovery room will also help, so you may want to arrange for that ahead of time, as well.

        Here is just a quip that I found on the internet regarding anesthesia considerations and Sjogren's. The whole article can be found at http://tahoedoc.hubpages.com/hub/Sjo...and-Anesthesia

        This is only one small thing that affected me so my point is: There are many more considerations to be made if you suffer from this condition and if you suspect that you have Sjogren's it really is in your best interests to have a conclusive diagnosis...cheers...F/G

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        • #5
          It acts more like something with the nerves. As there have been times when multiple areas start bothering me at the same time. Like my mouth dry up and my sinuses burn when I breath. But the presentation is a lot more involved than typically is with Sjogrens as well.

          I'd much rather explore all other options than just rely only on Sjogrens.

          I guess no one has any other possible causes for the multy system dryness other than Sjogrens? i.e. nerve problems, vascular problems, hormones?

          When the dry eyes first started, I developed a strange floater in one of my eyes. Never had one of those before and it's still there. I think the odds are more than a coincidence that the two happened at the same time.

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          • #6
            Unfortunately we are very complex critters and it is can definitely be a challenge to connect the dots. I wish you luck...F/G

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            • #7
              Originally posted by farmgirl View Post
              Unfortunately we are very complex critters and it is can definitely be a challenge to connect the dots. I wish you luck...F/G
              Yeah, problem is doctors act more like roadblocks instead of guides to solving the problem.

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              • #8
                Yeah, roadblocks in tiny self-proclaimed territories with separate languages and incompatible IT systems. Learning diplomatic skills ~ has anyone managed to get these people to talk to each other?

                Jason ~ you're with a teaching hospital aren't you? are the endos talking to the ophth? Are your eyes comfortable, or are you still in pain?
                Last edited by littlemermaid; 04-Apr-2013, 03:15.
                Paediatric ocular rosacea ~ primum non nocere

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                • #9
                  I could be wrong but im pretty sure you can get a ultrasound of your salivary glands instead of a lip biopsy to check for abnormalities relating to sjogrens/sicca syndrome.

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                  • #10
                    Originally posted by gormz View Post
                    I could be wrong but im pretty sure you can get a ultrasound of your salivary glands instead of a lip biopsy to check for abnormalities relating to sjogrens/sicca syndrome.
                    I'll have to check into that, but I doubt my latest rheumy would order the test as I don't think he even mentioned a lip biopsy.

                    Just getting the dry eyes looked at is hard beause I'd like to have a full dry-eye eye exam. But instead the eye doctors just want to do a run of the mill eye checkup. I know for example they can use these lights to see if your oil glands are clogged or atrophied.

                    The thing too about the lip biopsy is the guy doing it could end up biopsying the wrong thing. I've heard of people having to go have it done for a 2nd time because the person must not have known what they were doing and didn't biopsy the gland. Other thing is the guy who reads it might read it wrong and say there is no inflammation when there really is. So always a good idea to have it read by a 2nd person.

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                    • #11
                      It's not that they biopsy the wrong thing, it's just that sometimes the sample doesn't contain a salivary gland. That happened to me since I didn't want a lip biopsy they took a cheek biopsy but didn't get a gland so I had to have a second, this time in the lip where I think there are more glands. Anyhow they found one and it came back positive. Interesting gormz I never heard of an ultrasound, I'm going to have to google that..F/G

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                      • #12
                        So, nobody knows of any causes of widespread dryness other than Sjogrens? i.e. nerves, vascular, chronic infection, hormones, etc.?

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                        • #13
                          Originally posted by jasonsmith View Post
                          So, nobody knows of any causes of widespread dryness other than Sjogrens? i.e. nerves, vascular, chronic infection, hormones, etc.?
                          I have Sjogrens. The blood work came back positive so my rheumatologist said I do not have to do lip biopsy. I have the same problems as you. My ear canal used to be a little damp. Now it is all dry up

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                          • #14
                            Originally posted by mani2 View Post
                            I have Sjogrens. The blood work came back positive so my rheumatologist said I do not have to do lip biopsy. I have the same problems as you. My ear canal used to be a little damp. Now it is all dry up
                            My bloodwork has been negative. I have been chronically ill for over a decade. So have had autoimmune bloodwork done years ago before the dryness started, and that was negative too.

                            I do have neurological problems. But one thing that makes me think it could be a nerve problem is that there have been several times when the dryness really bothering me after lying down. Other thing is there are times when my sinuses start burning and my mouth dry up at the same time for example. Which makes me think there is a common cause of the dryness. Especially since my sinus dryness and mouth dryness started bothering me on the same day.

                            I do have alot of what feels like head pressure and sometimes feel a stabbing pain in my brain and also pain on the back of my eyes. So could be vascular. I did have a test done years ago that showed reduced bloodflow at my temple.

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                            • #15
                              Originally posted by jasonsmith View Post
                              Just getting the dry eyes looked at is hard beause I'd like to have a full dry-eye eye exam. But instead the eye doctors just want to do a run of the mill eye checkup. I know for example they can use these lights to see if your oil glands are clogged or atrophied.
                              There are a few people who luck out with an outstanding dry eye doctor from the get-go. For the rest of us, if we want any kind of methodical, thorough diagnosis, there are no shortcuts... We have to educate themselves and take charge of our care ourselves. This includes learning what some of the most common basic dry eye tests are (for tear volume, for oil content in the tears, for osmolarity etc) and asking for them specifically. (And, incidentally, selecting the right type of specialist.) If the dr. does not agree to do what you ask, that's fine but they need to have an alternative test that they prefer which will provide the same kind of information or a really good explanation of why you don't need to be tested.

                              Sometimes you can bypass the education process by going straight to one of the highly specialized dry eye specialists, but that can get very expensive very fast.
                              Rebecca Petris
                              The Dry Eye Zone

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