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Could it be Sjorgen's?

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  • #1

    Could it be Sjorgen's?

    When I wake up in the morning my eyes are always dry, and they usually stay dry throughout the day, so much so that during an eye exam the doc commented on it.

    My mouth always feels like a ball of cotton, and there's a coat over it that just won't go away! I'm very mindful of my mouth, brushing, rinsing, flossing, but this just won't go away. Also, I am always thirsty.

    Are these some symptoms of Sjorgen's, or am I nuts?

    Thanks!

    Hugs,
    Jess grouphug
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!
    Tags: None
  • #2
    Are you on any meds that could be causing it?
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment

    • #3
      Hi, Jess, I don't know if it is or not - I know an opthamologist would be able to help - but I thought that's what I had too, but it turned out to be ocular rosacea with "posterior blepharitis" in other words the oil glands in my eyes weren't working right and I had to go on doxycycline antibiotics (for the rest of my life) for this chronic condition. I also have skin rosacea, on my face, and it all came up about the same time the IC stuff did and it made me wonder if I have rosacea of the bladder or something LOL.

      Sometimes if your eyes are really red when you wake up you might have blepharitis. It's really pretty common I guess and sometimes people are helped with lid scrubs, hot compresses, etc. on the eyes but in my case none of that worked well enough and I had to go on antibiotics to clear my eyes up.

      HTHS
      Love, ICY

      Comment

      • #4
        Hi Kim and ICY--

        I'm only on Flexeril for Fibro, and it doesn't say dry mouth or eyes. I'm also on the patch, Ortho Evra...Hmmm...I'm so sick of my mouth being like cotton and my dry eyes! I am contstantly walking around with burning dry eyes. Grrr.

        Thanks!
        Jess
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

        Comment

        • #5
          I bet that is really annoying. I hope you can get to the bottom of it and get some relief!!! kissing
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment

          • #6
            If this is something fairly new for you, it could be from medications. Have you discussed it with your doctor?

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.             [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment

            • #7
              Well this has been bothering me for a few years, but I never talked to the doctor about it, well once I did but she just dismissed me. Guess I'll bring it up to the new doc.

              Thanks!
              Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

              Comment

              • #8
                Hi Jessica, Whenever I take Flexeril I have a dry mouth. I have been getting really thirsty from (i think) the Ultracet. I don't take the Flexeril very often bc I also swell up the next day. (fingers) Do you ever notice that? I guess though, since it has been going on since before the new meds, it is something to get checked out. I hope you find out soon....
                DanaW

                "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."

                Comment

                • #9
                  Hi Jess,

                  I started with dry eyes about a year after my diagnosis and, like you, it was always worse in the morning (and/or when I was driving). After a visit to the eye doc, I learned that I had basically stopped producing the lubricating tears that we all need to get through the day. Yes, I could cry... but it was the little daily tears that keep everything moist that was reduced. What's worse, if it continued, I could have developed some corneal damage.

                  So, I have eye drops on my nightstand and use eyedrops 2 or three times a night. I actually wake up more for my eyes than for my bladder.

                  Just a quick note. Not every type of eyedrop works. The cheapo Hypotears and those types of red eye reducing drops are VERY IRRITATING. They have polyvinyl alcohol in them.. which aggravates my eyes. I use Tears Naturale II or Walgreens Generic or Bion Tears. They have an ingredient called hydroxymethylcellulose (or something similar).. which is very soothing.

                  So, when they hurt, use some natural tears and that should help greatly!!! Talk to your doc too!

                  Jill
                  Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

                  Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                  Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






                  Comment

                  • #10
                    Geez, I'm in the same boat but I thought I was just 'addicted' to eye drops!!!!!!!!!! The drops really mess up that makeup job that no one really notices anyways wink
                    teri
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

                    Comment

                    • #11
                      Jess,
                      Have you ever tried Biotene chewing gum for your dry mouth? I used to use it when I was on Elavil, and I just bought a pack today because I just restarted Detrol which makes me terribly dry. I'm chewing it right now, and it's pretty great. No bad taste or anything, and it really helps to keep your mouth clean. It's $1.77, and I get it at a natural kind of apothecary. Check it out--it's worth it. Good luck.
                      Jen

                      Comment

                      • #12
                        Jess,
                        I forgot to mention that Bioten is specifically formulated for people who suffer with chronic dry mouth. It's supposedly the #1 recommended solution for dry mouth by nurses and pharmacists.
                        Jen

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