Fibromyalgia diagnosis almost 20 years ago. New symptom now - Dry mouth, low saliva.

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Hi all. Hope this finds you well. Up till now I have been doing some posting to the Sjögrens Syndrome community. However turns out I did not get that diagnosis. Very recently I had testing for that. Blood test and then the lip biopsy. Both turned out negative.

I am male, age 44. I was diagnosed with fibro about 20 years ago. I have however had many good years since then. 2 years ago i started crossfit even. Was in the best shape of my life.

Then this summer in July i began to get a dry sore tongue. Had never ever had anything like this. Mouth dryness became worse and worse. Now its to the point where I have got my first dose of Salagen to start creating saliva. Talking has been difficult unless I have gum or something to moisten my mouth. Saliva is clearly much much less. Has been extremely hard mentally and physically.

I would like to know how many of you may deal with something similar. What scares me is that this has just gotten worse and almost 4 months. Which makes me think this is no flare. Usually they come and go with any other symptom I have had. This is different. Never had a symptom like this before but reading on the net I see that there does seem to be people out there with fibro who suffer from dry mouth.

I guess I keep praying that this is only temporary but the fact that it has been going on for this amount of time really freaks me out. Originally i had thought maybe it was down to stress. Sore mouth, sore tongue, dry sore lips, dry throat at times and bit of burning in my nasal passages. Does this resonate with anyone on here. Have you been through something similar? Thank you very much for your any comments.

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  • Posted

    Hi Chris

    I to get dry mouth so bad it seems to stick my lips together, cannot go out without bottled water, have to chew gum when I get into bed, not nice but it helps moisten.

    Horrible thing to have isn't it. Had fibro for at least 10 years. Don't go out much as most days my legs feel like liquorice sticks, all wobbly.

    The dry mouth and utter utter tiredness was one of the first symptoms I got. you will know all the rest.

    Apart from the above I find nothing helps. seems like we have to grin and bear it but it is so very hard


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  • Posted

    Not wishing to alarm you but my father in law had a big problem with this and it turned out he had diabetes. He had no idea up til then so maybe get checked for this?

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    • Posted

      Thank you Miriam. Diabetes and Thyroid tests were the first ones taken for me when this issue began. Had read a lot that diabetes can bring this on. Sure would make sense too. But results were fine.

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  • Posted

    I've had this for years, its v embarrassing.

    I dont know if mine is medication related, due to Fibromyalgia, or menopause

    My doctor gave me pastilles & a mouth wash, but both are totally useless.

    I've started to mouth breathe all the time now for some reason..although my nose is v dry also.

    It's horrible.

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