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Do I have Sjorgen's Sydrome? pain when speaking

Posted , 3 users are following.

derekhhh
derekhhh

Hey all,

I grew up in a dry state- Colorado.  I remember I had to use Dandriff shampoo... and I remember my skin getting really dry.  I also had dry eyes and couldn't walk through a shopping mall without giving my eyes a break from the air conditioning blowing on them.

Now I've had a bigger problem which started when I moved to Asia at the age of 24.  To sum in up, whenever I speak for a period of time (like 15 minutes), I get pain in the back of my nose (nasopharynx area), my throat feels swollen, my eyelids swell and I get fatigued.  If I overdo it with talking, I feel a headache, and fatigued and need to sleep.  Ive seen 15 doctors- no one has been able to diagnose me.  I went back to America but the problem continued.  Also, if I wear a surgical mask, I feel relief about 70%, so I think it has something to do with moisture.

I recently discovered this disease.  Does it sound right?  If so, what medication do you think I could use?

Thanks for the help!

 

2 likes, 10 replies

10 Replies

  • Tumtum1963
    Tumtum1963 derekhhh

    Posted

    Could be but so could lots of other diseases and conditions including allergies. You need to see a rheumatologist to be diagnosed with Sjogrens as it's a rheumatic disease. I live in Scotland so can't help with your location but you need bloods run for autoantibodies and inflammation then see what comes up. Also worth asking an ENT specialist because of your particular symptoms. Do you also have very dry eyes?

  • ihavenonickname
    ihavenonickname derekhhh

    Posted

    Yup, sounds like Sjogren's Syndrome

    chuckle chuckle I am in Colorado Springs....wee world.

    See a rheumatologist.

    For eyes, Restatis drops twice a day are great. Need prescription.

    Skin, Lubriderm super dry moisturizing lotion as per dermatologist.

    No soap, it dries. Use Dove or Bath and Body Works or Philosophy or It

    Nasal use Ayr Saline Ointment. Non-prescription.

    Mouth use something like Biotene

    All of this treats the symptoms...yes, I have Sjogren's secondary to JRA.

    Pikes's Peak is covered!

  • derekhhh
    derekhhh

    Posted

    Yes I do have dry eyes also, and recently used an eye-plug procedure and it gave a lot of relief, increasing my tears that can remain on my eyes (I highly recommend it).

    I want to conclude that I have this disease.. but what about the whole pain when talking part (my biggest trouble)?  Has anyone heard of this being associated with Sjorgen's?

    Thanks!

  • ihavenonickname
    ihavenonickname derekhhh

    Posted

    I had my lower tear ducts burned closed permanently years before you were born...chuckle chuckle

    ..but what about the whole pain when taking part....????

    I think spell check muffed this up

    • Tumtum1963
      Tumtum1963 ihavenonickname

      Posted

      Well there might be aspects of Sjogrens that can cause pain while talking to do with sinus issues or even types of vasculitis I believe.i must have had similar once or twice because it strikes a chord. I do have problems with swallowing where I get terrible pain in my oesophogus and feel that food is just sitting on my chest,or higher up the tract, undigested. This is definitely a Sjogrens thing but whether it is down to lack of saliva or down to my autonomic issues i.e. Gastroparesis, I don't know. I suspect the latter but drinking litres of water when it happens is the way I get by. Have you considered having a lip biopsy if your bloods are negative for Sjogrens perhaps? Not that there is any real treatment but if your immune system proves to very overactive (is high levels of inflammation showing in your blood) then immunesuppresants might be warranted and may help. I've just started one called Cellcept - which is sometimes used for vasculitis too. And you may want to look into various types of vasculitis with your problems - Wegeners Granulamatosis and Churg Strauss sprung to mind.

    • Tumtum1963
      Tumtum1963 ihavenonickname

      Posted

      Gosh that's a long time ihavenonickname. I was meant to be replying to Derekhhh about the pain when talking re Sjogrens. Not very good at using this forum because I am infrequent user and hate not being able to edit after sending!

      I was offered Rituximab but decided on Mycophenolate instead as seems a bit less of a scary big gun for a very drug allergic person such as me. I can always come off it whereas Rituximab is IV and I live too remotely to risk drug reactions to it.

    • ihavenonickname
      ihavenonickname Tumtum1963

      Posted

      I like that idea to modify after we send...chuckle chuckle

      Wise decision to hold off the Rituximab...I live big city and I have an immunologist watching my levels. Nowadays, they can boost your immunoglobulin levels.

      big hug

  • derekhhh
    derekhhh

    Posted

    Thanks again guys.  And good to know about seeing a rheumatologist as I've only been seeing ENT specialists who haven't been helpful!

    Still am dying to hear of someone, anyone, who has the same problem as me.  Can't find anything on the net either about pain in the back of the nose when you talk too much.  Crap...

    • ihavenonickname
      ihavenonickname derekhhh

      Posted

      it dries...speaking increases inspiration...inspiration dries the tissue...nose, mouth, throat all the same tube...
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