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Help! Is this Sjorgrens?

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  • Help! Is this Sjorgrens?

    Hi all,
    I have suffered many years now with what I 100% believe to be IC which I will be seeing my doctor about now I know about the condition and have done research, However for years now I have always had problems with my eyes getting sore and very sensitive and I noticed I get eye infections frequently but the only thing is when I go outdoors my eyes do water a little at the outer corners so I'm not sure if I have Sjorgrens because of that factor, I do have hay fever as well though, But the worst symptom I have had for about 3 or 4 years now (perhaps longer) is really bad stinging pain in the left side of my neck under my jaw and chin and around my left ear, it is sited where my salivary glands are and it hurts just to brush my hand across the area and I do get a dry mouth a lot and I have noticed me talking a little funny because of the pain though nobody else notices this. I also suffer from a lot of coughing because of phlegm build-up in my throat as I have sinus problems and also shortness of breath sometimes but I'm not sure if this is due to me panicking myself as I have terrible anxiety. Because of my dry throat I have tooth decay and I get bleeding gums when I brush my teeth and when I wake up in the morning my mouth is dry so my gums have a bit of blood on them. My doctor has examined my throat where the pain is and he has booked me in for a scan at the hospital, he believes me to have a stone in my glands but after doing some research I found Sjorgrens and it fits all of my symptoms except for my eyes getting a little wet when going outdoors, tears don't stream down my face though and when I am indoors my eyes do feel very dry and I have to blink a lot as they feel fuzzy, I get very tired as well and sometimes I feel too tired to get out of bed or I go to bed early. Also about 6 months ago I had a small cyst under my tongue and it popped and it had foul liquid in it, I do suffer mouth sores and tingling gums often though. I can't understand as I look after my teeth and brush them often, I don't have a dentist and there is no chance of me getting one either. I think I've added all of my concerns and I would be really happy if some of you could shed a little light on my symptoms as I am terrified and extremely worried.
    Thank you :-)

  • #2
    Much as I'd like to offer a guess, you really need to see your doctor.

    Stay safe

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    • #3

      Sjogren's Syndrome is also an autoimmune disease. I personally have both IC and Sjogren's. I do know of others who have both. Unfortunately, is not at all uncommon for an individual to have more than one autoimmune difficulty.

      Of course, only your physician or specialists can diagnose your difficulties.

      You are at a good place here witht the IC forum. In addition, you might also wish to visit a forum of the same nature but with a primary focus on Sjogren's Syndrome. It's home page is here:
      Sjögren's Syndrome, SjSWorld is a place to learn about Sjogren's Syndrome, an autoimmune disease and symptoms, and more specifically Sjogren's with central nervous system effects including but not limited to neuropathies.

      Just a note on one thing that you mentioned: Please know that only the most severe cases of SJS show next to no tears. Usually we have diminishment in the quantity and quality of our tears. Sjogren's is a progressive disease, sometimes with complications...but there are disease modifing medications that can help preserve gland functions and work against the appearance of complications.

      Also, please be aware that SJS attacks all the the exocrine glands: sweat glands, lacrimal glands (producing tears) and salivary glands. I know that you realize that tears and saliva are affected in SJS. The exocrine sweat glands are those on our skin surfaces that are crucial in regulating our body temperature. I am personally am very prone to heat exhaustion (even heat stroke) if I am not extremely careful when the temperature and heat index rise even a little. I do take medication that permits me to sweat a bit and it has made a difference though I must remain vigilant. Until you receive a diagnosis of your difficulties, please consider protecting yourself from environmental heat. Your family and friends maybe enjoying warmer weather at a level that actually can be dangerous for you if you do have Sjogren's Syndrome!

      Best wishes on your journey to improved health, KellyMarie.
      Last edited by olmphoto2; 06-22-2011, 12:48 AM.


      • #4
        olmphoto2, Thank you very much for your advice, I do have problems with my sweat glands I don't seem to sweat a lot really and also and I have noticed pain under my right armpit area if this helps? I do suffer headaches and a feeling of sickness when being out in the sun for a bit when it is hot. I have also noticed when I get hot my hands and feet feel itchy and sore and I occasionally get red rashes on my hands and feet and also scabs on the top of my head, also my armpits and back itch when I get hot as well. I am going to make an appointment with the doctor next week and hopefully they will come up with some answers but all your advice is helping me cope until then. The thing with my doctors is they say that they will see you for one problem at a time but I have so many problems that seem linked that it is hard!


        • #5
          I have had a terrible time with dry mouth. I have been taking Elavil, for my IC, for 8 years about 9 months ago my doctor added Zoloft. That when this horrible dry mouth problem began. My nurse practioner was afraid to prescribe me something to help me produce saliva as she thought it might affect my IC. Any suggestions?


          • #6
            Venus Williams Withdraws from U.S. Open Due to Sjogren’s Syndrome

            Get breaking national and world news, broadcast video coverage, and exclusive interviews. Find the top news online at ABC news.


            • #7
              Yes, please see a doctor about your "sjogrens" symptoms if you haven't already. I also have sjogrens along with IC. I have read more and more about the link between the two.

              Very interesting about Venus - I wish her all the best, but hope she can bring more attention to sjogrens as well. I hope the meds help her as well!!!
              49 year old SAHM with 4 great girls and hubby.

              Symptoms started 1/09.
              Officially diagnosed 4/09.
              Symptoms are totally pain, very little frequency.
              Diagnosed with Sjogrens 9/09
              Diagnosed with mild gastritis, GERD. Chronic Heartburn

              Current Meds.
              Quit Elmiron after 4 yrs
              Previousy had instills 6/09-2/10 and a few after that
              Started PT 12/09 - a great help too!
              IC Diet - an unfortunate must!
              Plaquenil (for Sjogrens)
              Iron pills as tolerated due to iron deficiency

              Doing much better than my first year of diagnosis, but still have to carefully watch my diet if I want to stay out of pain.