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Dry inside lips

Posted , 5 users are following.

amanda81171
amanda81171

Hi has anybody got a problem with inside of lips very dry. The rest of my mouth seems ok except getting a lot of mouth ulcers but inside of my lips are very dry and tingly and forever chewing gum and putting vaseline on my lips outside.  I also have really bad dry eyes and forever putting in drops and  at night v painful as eye lid still sticks to eyeball and during the day feels like I have a piece of grit in it.  Anybody have any ideas. Dr just gave me lozenges to suck but thats ok if whole mouth dry but doesnt really help my lips! Also like the lady before test didnt show up i have Sjorgrens for sure but Dr thinks I have. Should I have another test done or what especially as dryness getting worse. Oh one more thing which Drs dont seem to think much of but every time I have a blood test it comes up I am dehydrated but I do drink a lot, could this be another sign of  this disease?  Thanks  everybody much appreciate your help

0 likes, 5 replies

5 Replies

  • pam_87693
    pam_87693 amanda81171

    Posted

    Hi Amanda have you been diagnosed with Sjögren's Syndrome? If not then you need to try to ask if any family members have either RA or psoriasis with PsArthritis. The most simple way of getting help is to ask your GP about the mouth ulcers. If they are continuous then tell him. Do you have a dry vagina? If so the dry eyes, mouth and vagina are the Sicca symptoms of Sjögren's. Then think about your tummy. Do you get pain there. If so it could be IBS. The best way of checking is to ask your GP to do a Coeliac test, if that's negative he might wish to think of an alternative problems. Do any family members have Crohn's or colitis. The problem with the 3 connective tissue diseases is they can be very difficult for your GP to trace a cause. The dryness and tingling does sound like SS there is just one question are you by any chance hypermobile? If you notice your hands and feet change colour that is Raynaulds. Try not to chew gum if you have pain in your jaw. That's TMJ again common in SS. I hope that has helped and if you become positive then I suggest you join the BSSA. My Consultant is its President. The most important thing is to look after your teeth and mouth. You need regular dental checks, drops for your eyes and get something for those mouth ulcers too. See an optician and ask him to do a Schirmer Test as that will indicate how dry your eyes really are. If it's less than 5mm in 5 mins that does need attention. 
    • shaq26875
      shaq26875 pam_87693

      Posted

      Hi Pam, I was diagnosed with SS last sumer (saliva antibodies ) and then a few months later I stopped the plaquenil as my nose started to drip and saliva flowing again and joint pains stopped. However recently my knuckles and wrists are uncomfortable ..aware of stiffness and discomfort everyday (almost 24/7) but saliva is fine (never had dry eyes) but i need to drink water constantly even in middle of night if i wake up i need to drink water (I cant remember if that better when on plaq.)  I dont really want to restart plaquenil to see if it helps or visit rheum coz that will justify him to restart the plaq ( and he was unhappy when i stopped after a few months on it) My lips feel constantly dry (but not dry to touch) but mouth full of saliva,  and so i sip water the whole day through.

      Do you think this is still SS? Or just me being  dehydrated?

    • amanda81171
      amanda81171 pam_87693

      Posted

      Hi Pam  Thank you for replying. No I dont think I have family members with this though my granparents had arthritus.  Seen a consultant re this syndrome and lots of tests and he said thought i had it but blood test not conclusive but since then my inside mouth has come to the fore. Yes I have a dry vagina too. Eye specialist said have very dry eyes and corneal erosion. My son has crohns disease. Yes I have Raynauds. Also have bad cramps in legs is that a symptom at all? It all seems to point to it except for blood test. Should I have it again? Fed up with it all I have to say as been a few years now with eyes and vagina. Any other ideas now you know a little more perhaps. So grateful
  • Kablois
    Kablois amanda81171

    Posted

    Hi Amanda, I am new to SS and currently undergoing tests (Anti-nuclear blood tests negative so far but others being done). I too suffer badly inside my lips, the membrane feels rough and dry and raw, almost like I've burnt it with something too hot and I have huge problems with ulcers too. (If you have any remedies - I'm a taker as they make my life miserable and it's even difficult to talk sometimes). I was interested in your coment about cramps because I have never heard anyone mention them on the SS boards but I have suffered for years on and off with foot and leg cramps that wake me in the middle of the night. I have tried taking magnesium and potassium but don't know if they work. They are a lot less frequent at the moment - it's my mouth that is the most problematic.
  • suncat
    suncat amanda81171

    Posted

    DOES PLAQUENIL   MAKE YOU HAVE ANXIETY???i HAVE TO TAKE MEDS TO CALM ME.i K

    aRE YOU ON ANTI DEPRESSANTS????dO YOUHAVE gERD BECAUSE ITS CAUSING SWALLOWING PROBLEMS...so MANY sJROGENS CAN EAT tHEY ARE VERY LUCKY......tOLOOSE 20 LBS ITS NOTFUN YET I CAN LIVE WITH THIS IF I CAN EAT

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