Could i jave ss syndrome i too experisncing horrible tsste in my tongue plus my tongue hurts and tazte vile .its been on going since feb this year .i also very tired all the time all my joints hurt too plus 3 yesrs ago i had a frozen shoulder .am so sick of it
Could i have ss syndrome in feb this yesr i woke to a foul odour in my mouth ive had tonilitus and t
Hi Julie you would need to see your GP, rheumatologist etc to be diagnosed properly. Have you undergone any tests at all?
If not that neefs to be your 1st port of call x
There sending me to an ent specialist
It so hard and a very frustrating time.Nothing is cut and dried and that easy. I had loads of different tests with various consultants that came back normal... i was really tearing my hair out. I remember my GP stating all this could take between 2-3 years for firm diagnosis and she wasnt wrong. Hang on in there.. mither the life out of your GP as you want answers.. keep your chin up. Good Luck x
Hi Julie: I wake up to the same breath issues; it was one of the first signs that something was wrong (including frozen joints, swollen ankles, dry eyes and mouth) and feeling very tired. I have my own discussion here about it and I hate how it feels as well. I went to the dentist yesterday and he used water and a suction tube to take tonsil stones out.
I’ve tried everything to get rid of it (for the past two and some years) and nothing has worked. I’m getting my tonsils taken out, which is supposed to be very painful for adults.
It’s been embarrassing and I’ve left several jobs, because of it. But I e gained tough skin and realized that all I can do is keep fighting it. It’s depressing as well. I drink water and have it with me, tongue scraper, and now, cocunut oil to oil pull the bad bacteria.
That’s the short of it. My medicine cabinet is full and nothing seems to be completely working. If you find a remedy, please let me know.
When you get your teeth cleaned ask for a deep clean ..the dry mouth has probably given you bacteria under your gum line. I have this done every 4 months and its not uncomfortable . I also use a water pick for cleaning under the gum line. I had bad breath in spite of brushing teeth 3X daily, strong mouth fresheners etc etc but now it's much better...though sometimes I still feel I can smell it.
Hi Julie are you on ciclosporine meds?
Hiya did you say you was on ciclosporin?
No im on omeprozol
I was asking because apparently
You can have issues with your mouth/gums on cyclorspirin.
The first sign for me was my mouth i was eating some potatoe chips and they tasted like the most strongest vinegar. And they were not vinegar chips. Then i could hardly eat anything only vegetables and within a few days after that I had my glands come up on the sides of my neck they were the side of golf balls everyone thought I had the mumps .And following that within a week no siliva in my mouth and then another couple of weeks joint pain and the fatique set in. Go to the doctor I went to a specialist in the finish and had a lip biopsy
All my tests came back negative. Then, I had a lip biopsy done. That was when I was diagnosed with Sjogrens. I found it a good option, since I wasn’t getting answers. Good luck to you.
I agree.
That’s about how mine started as well. The lip biopsy confirmed it, in the end. I still have my battles, but am beginning to find more confidence and have gotten rid of a few stressors in my life recently.
Keep fighting.
We are all here to catch you, Julie.
Thankyou means alot.csn cope with most things but this is horrible.
Yes, it is.
Trust me.
I know.
Not to mention embarrassing at times.
I wake up every morning with it. It only strays occasionally when I eat down differently. I’m still working on it.
I’ll sebd you a personal message.
Thankyou
I was , at least 5 years ago .Now on a gel which is OTC . Only problem is that my lashes stick together and sometimes 1 falls out
How do you get on with these overnight gels, shaq?
I used carbomer gel for a year or two, originally on the advice of my UK optician, which was then confirmed by the first of the three ophthalmologists I saw this year. However, I never really got on with it, as it glued my eyes shut, and if I used it more than three nights in a row without breaking for a couple of days, it left me with very blurred vision all day.
This year's second ophtho told me to stop using it and switched me to a cream. Can't remember the trade name now, and it wouldn't be relevant as we're all in different countries anyway, but it contained lanolin and white paraffin. Like ophthalmic E45 (for UK readers only!) That lasted two days, by which time my eyes were so sore and bloodshot, I chucked it out.
The third ophtho was horrified that anyone would have suggested I use these products, as she said I'm not producing any oil at all in my left eye, and not enough in my right, and gels and ointments were just glueing up the oil glands even more. She's put me on one of those eye masks you heat in the microwave, to try and loosen up the oil glands. I'm hoping that might work.
As a former nurse, I do realise there's never any one way to approach a medical problem but I must say I'm a bit concerned by such widely divulging opinions.
Oops! Should be "diverging opinions" in last para. Senior moment - as I get older I find I muddle up my words a lot!
Some days I forget to use the gel and I don't notice the difference in my eyes... I see the optho every 6 months and she said my eyes were getting drier. I still get the feeling of a big stone in my eye ...(not really grit which causes burning or stinging,,,just something in my eye with rounded edges....I cant really explain apart from what I just said,,,,and if gently rub my eye in a circular motion it subsides. The pressure feeling I used to get has subsided. she also said I have huge floaters and is surprised I don't notice them My secondary cataract in my right eye has got worse but not enough to be lasered away.
I know exactly what you mean about Sen moments
sometimes I cant find the words I need. I was wondering if I was getting dementia.. but I suppose its all part of ageing :-
I doubt if I could do the jobs I did until my late 50s