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Drymouth / Drooling

Posted , 3 users are following.

jacqueline00180
jacqueline00180

Hi has anyone got a dry mouth but are drooling  as I can't get my head around this.

I have a dry mouth dry lips teeth are dry my tongue is dry the top of mouth sore  the sides of my tongue are rubbing on my teeth yet I feel like I am drooling out the side of my mouth.

I find it very frustrating I obviously  I have some saliva I thought if I got saliva back in my mouth I would not have a dry mouth anymore but this isn't the case everything is still dry the two feelings of wet are dry are very confusing to say the least .

Has anyone else has this I have along way to go to understand Sjögren's 

jakki x

 

0 likes, 7 replies

7 Replies

  • lily65668
    lily65668 jacqueline00180

    Posted

    Yes, Jakki. I have exactly the same thing and I'm just as frustrated as you! My mouth is much less dry than it was >20 years ago when I got my first SS symptoms. However, I'm currently going through another period of relatively mild dryness, where the insides of my lips keep sticking to my gums, and I've always had quite severe dryness problems in the night. I often wake completely unable to swallow and unable to work up any saliva at all in my mouth. And yet...

    ...I drool. And it's getting worse with age. (Either that or I've just noticed it!) I know I've always spat a lot when talking - I occasionally see people wiping their faces and I'm so embarrassed about it I often keep my hands in front of my mouth when talking to someone at close quarters. But now it's worse - I'm aware that I drool constantly out of the right-hand corner of my mouth. I don't have a facial weakness or any other neurological symptoms - except SS-related peripheral neuropathy that I've had for years - so I don't think this is the result of a minor stroke or anything like that. To make matters worse, I live in a culture where everyone kisses all the time so I have to be very careful to offer the briefest of air-kisses!

    Thank you for bringing this up. I can't help you at all, but knowing I'm not the only person in the world with this problem helps a little bit. If you ever find a solution, let me know!wink

    • jacqueline00180
      jacqueline00180 lily65668

      Posted

      Thank you Lilly for getting back to me I feel for you too, i really do it is so frustrating isn't it  I was hoping if I got saliva back they got is wrong and I don't have Sjögren's that is wishful thinking I guess .

      It just didn't make sense I normally have teeth full of lipstick where it sticks I have started to talk with my teeth together to stop me spitting and try to sleep with me mouth shut at night but somehow i end up drooling then to as I can't keep it shut ha if I find a solution with defiantly post at leat we are not alone all the best jakki x

    • jacqueline00180
      jacqueline00180

      Posted

      I did read somewhere that Sjögren's can change daily I also use Biotene  gell x

    • jacqueline00180
      jacqueline00180

      Posted

      Sorry Lilly it happens when I don't use the gel as well  i find the symptoms are never the same from one minute to the next if I am as positive as you are in 20 years time it will be fantastic x

  • Megheart
    Megheart jacqueline00180

    Posted

    It is paradoxical Jakki. I had a similar occurence but involving the eyes. When a doctor asked me whether I had dry eyes (a silly question in my opinion) I said "I don't think so" but I have streaming from the eyes when outside. To me streaming didn't mean dry eyes but rather very moist eyes. 

    I did have other eye symptoms such as pain deep in the eyeballs, cracking at the side of the eyes and heaviness of the eyelids. A better question for doctors to ask would be "do you have any eye symptoms" or "tell me about your eyes".

    Unfortunately there isn't enough explanation by doctors of these seemingly contradictory type of symptoms which can occur and why. Perhaps the 'why' hasn't been properly investigated with RCT's or phenomenological studies. However even a collection of anecdotal examples can be useful.

    Perhaps a pamphlet or brochure written up by one of the Sjögren's support groups outlining the range of things that can occur with Sjögren's would go a long way to educating and reassuring people.

    Recently during a hospital stay I had a number of doctors come to see me and truely the only thing they knew about Sjögrens was the dry eye and dry mouth. I told them although I had some mouth and eye symptoms at the outset of this in 2007 they were not and still are not the most significant symptoms I have rather I started with quite severe neurological symptoms.

     

    • jacqueline00180
      jacqueline00180 Megheart

      Posted

      Hi megheart

      I thought at first it must be my imagination but at night it's dry and and everything sticks to the roof of my mouth but then I have woke up drooling it's strange i use Biotene gell night and day. I do know what you mean though when you say it's dry and then Drs say its not I say to them now  if we are going to work together you need a to listen to me rather that what you see as you know with Sjögren's it's not always black n white.

      I am surprised how people have no idea about Sjögren's and its awful sypmtoms thank you for getting back to me 

      Jakki x

    • jacqueline00180
      jacqueline00180 Megheart

      Posted

      I agree when you say about Sjögren's and what Doctors say and how they do think it is dry eyes and mouth if only it was,  for some people they suffer the most awful symptoms and so little is known about this awful debilitating syndrome, for me it's only now  it's all coming together after years of suffering many different problems and at times felt like I was going mad I feel it's a huge relief I would cry if I could but I don't have any tears all the best jakki

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