hi peeps i too have just been diagnosed scleroderma plus sjogrens syndrome too . my question to you all at the moment does anyone else get terrible itching my head does not stop also becoming painful and some days my mouth so dry tongue sticks to roof of mouth the next thing to hapen its like a waterfall happening in my mouth having to swallow so hard . thankyou if anyone can help .

11 Replies

  • Hi Duppydoo

    Welcome to the forum. I haven't had the itchy head, but do get a very dry mouth especially at night and then sometimes find myself dribbling at meal times. I also have painful salivary glands if I eat something sharpe and assume they are blocked. There are little tablets, gels and sprays you can get to help with the dry mouth. Check with your pharmacist or GP but I find they only last a short while. I keep diet lemonade by my bed to freshen my mouth but I suppose water is healthier. I find the lemonade is better at stimulating saliva. Hope you find a solution.

  • Fresh lemon in a glass of water rather than the plain water might be better for you Duppydoo......just a thought pet. I love diet irn bru mesel' :)

  • thankyou marilyn i love lemon but also with honey dont like fizzy drinks .

  • hi lynda thankyou for your reply my rheaumy has made an appointment now to see another doctor at hospital now for clinical research dont know what its about but im hoping he will have the answers about this awful itching .i have been given eye drops also mouth gel but they only work for a short time dont they but the continnues dribbling in the mouth is awful do you find yourself continually swallowing and i cant drink fizzy never have never liked it so juice or water mainly so have to wait and see what happens next at this clinic i will update you as soon as ive been ok .

  • Hi, do you think you might be having an allergic reaction with the itch? Ask your doc or rheumatologist about that one! As to dry mouth one minute and too much saliva the next....yep! I get it running out the corners of my mouth regularly...even though I am not aware of this until I feel it dripping off my chin! Very annoying! Then, at times, I get the opposite with dry mouth as you describe....could be the Ssc..or the meds we have to take. Anyway, you are not alone with that one......but, having just thought on the itch....I did, for a short while, a few weeks I think, get an itch in my arms .....forgot about that! But, it did disappear eventually. Definitely ask about this itchiness though...and the dry and wet mouth to get proper answers. NOTHING WORSE THAN AN ITCHY HEAD! Most annoying for you! Good luck going forward...x

  • Could be because your scalp is dry I would get like that check with your chemist for a shampoo to help with the dryness

  • Hi Duppydoo

    I have scleroderma plus sjogrens syndrome. Like you I have itchy skin. I have itchy eyes and dry mouth too. I wake in the middle of the night and I always say I have to peel the inside of my face from my teeth and my tongue just doesn't belong to me. My consultant has just prescribed a mouth spray and eye drops but I don't yet have them as I'm awaiting prescription from GP. My eyes feel awful and I've had to give up on mascara. My most uncomfortable part of the scleroderma is my feet - the skin is getting so tight. Support knee high things help in the day but when I take them off at bedtime my feet start screaming - not painful but they feel so strange as if my skin isn't big enough. I thing everyone's systems are different with these strange disease. Hope your doctor manages to keep you comfortable - let's hope we can all stay cheerful despite these awful symptoms.

  • hi betsie thankyou for your reply . do your hands hurt too as mine seem to be swelling more now ive had to remove rings as they were getting really tight . and like you say eyes too they were running like i was crying .and cold feet gosh when our feet get cold it takes ages doesnt it to warm them up and i sit in a quilt every night to keep warm . and when the raynauds starts oh gosh i could cry when im out even though i have snow gloves on .like i said to lynda in another post im off to see a specialist in clinical medicine dont know what they do but i hope answers will be there about my itching of my head ive scratched so much now my head is sore and you cant help but itch can you .so i will keep you all updated about my appointment in march when i see them , oh and make up mee too ive given up with it spk soon ok .

  • duppydoo

    I haven't had my scalp itch bad but I do have sjogrens too. I use Biotene mouth wash and it helps. Also I eat a dill pickle spear and sometimes drink a little juice and that helps me too! I know it sounds crazy but it works!

  • Hello duppydoo. I only joined the forum a week ago as I am newly diagnosed with limited SS, fibromyalgia and today sjogrens as well. I to have awful dry mouth and eyes. I also have a lot of irritation particularly on my back. Might be the SS I suppose. I am awaiting to collect a prescription from my gp for gel for my mouth and drops for my eyes. Specialist also said to suck citrus fruit drops. I do always have at hand lemon and ginger in a glass of water. Ginger is a good anti- inflammatory. I only seem to dribble at night at the moment though. Best wishes for better health.

  • Hi duppydoco I have been diagnosed with Raynauds and Limited systemic sclerosis 7 years ago and had intermittent pain in my salivary glands many years before. I still get pain every now and again but have been having dreadful dry mouth especially at night for about 3 years.. My lips can stick together and tongue feels like a lump of leather. My Rheumy prescribed Glandosane mouth spray which I use at night and i have a water drink bottle by the side of the bed that I can sip at. I asked for Salivix pastilles which are convenient to use in the day to help stimulate saliva production. Sjogrens was mentioned as a possibility but no other diagnostic tests were carried out so i assume that was the problem. Eyes aren't too bad. I also have Osteoporosis, SVT and osteoarthritis in my hands and back. I don't get excessive saliva production itchy head isn't a problem. i always use a conditioner when I wash my hair. Sounds like you need some sort of emulsifying shampoo on prescription.

    Hope you get some help soon

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