I was diagnosed with Sjögren's in Feb this year After my optometrist checked my eyes and referred me to my gp for blood tests.i am using Hylo fresh eye drops and biotene gel in my mouth to help sleeping,I found drinking water during the night makes the dryness worse I need to drink cordial or juice although I'm scared what that will do to my teeth . I also notice that my hands go numb during the night not sure if this has to do with Sjögren's , and the glands under my jaw are always swollen in the morning

And usually go down within a few hours has anyone else experienced this?

The dr says there is nothing that can be done but to try and manage my symptoms as best as I can so any advice is appreciated.


15 Replies

  • Hi. Also have had same symptoms plus bone and muscle pain but negative on bloods.. Find HiLo forte is better. Also tumeric capsules help with pain. Drs in Australia have no understanding of this syndrome. They are incapable of thinking outside the square! Try see an opthalmologist and ask about autologous serum tears. Even that is made so difficult by the blood bank I am seriously thinking of going to NZ for it!

  • I have hashimotos and sjogrens. I had various problems before each diagnosis. For sjogrens I take pilocarpine and also hydroxychloroquine used to be called Plaquenil. My major symptoms are no saliva, no tears and reflux oesophagitis, I take lansaprazole for the reflux. Also gel tears, celluvisc and I buy biotene spray from USA online.

    I find the best thing that helped my mouth which was very sore and tongue cracked was a 'Japanese Wellness Water filter. I buy it online and the only time I don't use it is when on a flight so I have to use bottled water which after an eight hour flight means my mouth is sore again for a few hours. It might not work for you but it does for me.

    Also I researched and asked the GP about pilocarpine and he hadn't heard of it so asked a colleague before giving me it.

    I later moved and changed GPs and my new GP sent me to a Rheumatologist who I now see annually after she got my medication right.

    Sjogrens sufferers see rheumatolists because there are two types of sjogrens one comes after Rheumatoid arthritis and is secondary but I just have primary sjogrens and also hashimotos. So rheumatologists treat all sjogrens

    Finally try salivix lozenges, they help with mouth dryness and I always carry a small bottle of water in my bag.

  • Hi Rosemary64 thanks for the info can you tell me where to get the lozenges? Thanks

  • I get them from GP but I can also buy them at chemist. Salivix made by Galen. Made in Sweden by Jemedic but distributed in UK.

  • hi, Rosemary, excuse me sidetracking, but your the only person I have ever come across that has Hashimotos! How did you end up with it? My mother had it, we had to wait 6 weeks while they decided if it was cancer or the hashimotos, she got it because she had a tumour removed from her thyroid but the doctor made a mistake and didnt put her on thyroxin, lo and behold, 10 years later, Hasimotos, thank god it wasnt Cancer. But as I said, your only the second person I have come across with it! Lyzzie x

  • Hi Lyzzie. My story is a bit like your mums. I started with symptoms of hypothyroid, weight gain, voice, changing, tiredness. I went to GP who said yes you're not making enough thyroxine but when blood test came back I wasn't outside the range they say is normal so I was sent away. This was repeated every year for five years every time with a different doctor always bloods say no.

    I went from 56 to 84 kg and lost my appetite. Finally a blood test came back that I was now officially hypo so they started a low dose of thyroxine in the meantime I had some swollen glands on my neck and when I saw surgeon he ignored the lack of thyroxine saying I had a goitre which could be cancerous.

    So I had a thyroidectomy but it was not cancer but Hashimoto's thyroiditis which if they had treated me earlier the swelling would have subsided on its on.

    For the last fifteen years I have been on thyroxine but at a dose which keeps me in 'the range' and I didn't feel any better. I tried all sorts of vitamins etc. There is a large community of thyroid patients in England who think they are being under medicated. Doctors seem to treat the blood test not the patient. Finally last year I found an endocrinologist who has treated me with liothyronine as well as thyroxine and allowed me find the dose that work for me.

    Sorry for rambling but sounds like your mum was like me and not in the range and they only tested me because I asked for it. Not all hashimotos patients have antibodies that are measurable

    It's common for people to have more than one autoimmune disease but the diseases are so slow moving doctors blame symptoms on aging.

    It took about five years of different problems before sjogrens was diagnosed too.

  • that interesting rosemary, I dont remember mum ever being tested for thyroid until she had all the changes you described, voice change etc., and she started getting wiskers bless her, her hair was falling out,...the tumour was found by accident, she was a nurse and one of the doctors there was training to be a GP and doing her stint with the 'old dears' mum nursed psycho geriatrics, and wanted to practice examining someone glands etc., mum just happened to be there, low and behold she had a lump in her throat, and it was beginning to encroach on her windpipe, I cant help blaming the lack of thyroxine and such afterwards for all the problems she had healthwise afterwards. It was a good ten years before she was put on thyroxine, but as I said, your only the second person Ive ever come across with it, you obviously went the route of is it or isnt it cancer, I know they have to be careful, but that waiting is terrible isnt it. Hope they have sorted you out now, please stay well. Lyzzie x

  • Rosemary I can get Biotene spray from Chemist Warehouse. Salivex Lozenges do you get them at the chemist here? Do they taste ok?

  • Hi sheha2

    I would advice you to see a rheumy , to get bloods checked and check the glands . It maybe your salivary glands are blocked, check sjogrens.org web site re how to massage to reduce swelling. The plaquenil did help me and i didnt have any side effects (as yet!) . It does appear that your gp as very little experience of sjogrens and the sooner you see a rheumy the better to keep symptoms under control as unfortunately it doesnt go away. Good luck😀

  • On the Internet you can order Xylimelts which are disc that stick to your gum and dissolve slowly and gives about 5 hours sleep xylimelts.com Numbness of the hands and feet is Sjogren's it effects your peripheral nervous system and your circulation. Your swollen glands you need a hand held face massager to massage the glands to prevent blockage and stones forming the Paroited Gland on the sides of your face needs massaging if it stops working it will shrink and disappear completely mine did.

  • I second the suggestion to see a rheumatolist. Best of luck. There has been some great sounding advice in this post. I hope you find a good solution.

  • I believe the Sjogrens is the most weird and wonderful illness you can get! I was diagnosed about 17 years ago, Im One of only two in my surgery with this problem, with me I was diagnosed because my doctor thought I had mumps, but it didnt go away, so they did blood tests, and there it was. I honestly think they dont know what to do with it, I have Salazopyrin (Spelling) which is an immuno suppressent, you probably know by know that you immune system over reacts any interference! MY eyes and mouth went through that dry stage but it went away eventually, do you think you've had the problem for sometime? Sjogrens I mean, it effects any glands it can find, hence the dryness as it goes for the tear ducts. It will calm down, personally I find I get flare ups, I also have a peculiar rash down the backs of my legs, thats the sjogrens too, muscle pain, alsorts, if you have got that Im sorry to say you probabley have others like the fibro, Arthritis, etc., they are all autoimmune problems, Colds are a nightmare as the sjogrens never knows when to stop fighting!! make sure you keep up with flu jabs, and the Phneumonia Jab, you didnt say how old you are, but the sjogrens will qualify you, it can get nasty, but as long as you take care of yourself, you'll do fine. Hope this has helped in someway, stay well, Lyzzie x

  • Thanks Lyzzie I am 48 I have always taken a drink to bed as long as I can remember as I got thirsty during the night not sure if it was a dry mouth though, now it's def a dry mouth and much worse but last year my eyes started to feel irritated, for a while I thought it was the makeup I was wearing to work everyday so changed brand 3 times and finally in late Jan I went to see the optometrist, who asked my gp to do the blood test . I am just starting to get the numbness in my hands and a slight pain in my fingers, wrists and elbow, it's scary my biggest challenge is my gp who says that it's only in extreme cases Sjögren's sufferers need to see a specialist and I only need to learn how to manage my symptoms but I'm struggling to do that at the moment.

  • hi sheha, what Im going to say isnt going to be very encouraging, but thats what you have to do, learn to live with it, You say you have pains in your elbows? is it in the muscles as well? have you talked to anyone about Fibro or do you know about that already, My eyes no longer get dry, but the are often blurry and sensitive to bright lights, I have a very good Optometrist, need encouraging, look at Serena Williams the tennis Ace, she has sjogrens, every one is different though, you do need to see a Rhuematologist and have a good chat, everyones right about that, you need information, Im sorry I cant be more help, but we are all here to listen and sympathise any time it gets too much, or you just have something daft to say, I have always found the guys on this site an excellent moral booster and they can be downright nutty at times, but it all helps. Are you working? hows that going for you? hobbies? distraction works too, its never going away though, but you can get around it if ou cant get over the wretched thing! Lyzzie x

  • From reading different posts it would seem that all sjogrens suffers start of with niggling probelms that just get worse! I do think you should push your gp for second opinion from rheumy so you are on the books as is a life long probelm and expert advice makes a difference😀

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