Help

There's no definitive test to diagnose the condition. An ophthalmologist can do a test where they put little absorbent pads under your eyelids for a few minutes, then measure the amount of fluid they've absorbed. A lip biopsy can give a diagnosis in some people too. My own condition was finally diagnosed when my GP ordered a blood test for anti-salivary-gland antibodies and it came back positive. However, the problem with all thz tests is precisely that the condition tends to come and go, so Murphy's Law inevitably comes into play. If the Sjogren's happens to be in mini-remission the day you have the test, the result will come back negative.

In general, doctors (at least the very few who've actually heard of Sjogren's!) tend to make the diagnosis on symptoms alone. This isn't as unsatisfactory as it sounds, as there's very little in the way of treatment for the condition anyway, and it certainly can't be cured. It's mainly a question of management. Looking after your teeth and gums is paramount. And try to avoid eating sweets or drinking sodas or smoothies. Drink small mouthfuls of water at regular intervals throughout the day, rather than swigging large quantities at a time. There are lots of useful chemicals in saliva, and drinking a lot of liquid at any one time will just wash away what little saliva you have. There are over-the-counter mouth gels and eyedrops that your doctor can recommend too.

In some cases, doctors will prescribe steroids for the condition, but I'd advise putting that off for as long as possible, as the side-effects can make you feel even worse. I never went on them. I don't think my symptoms were as bad as yours - my mouth used to bleed at the corners and my lips and cheeks were constantly sticking to my gums but I didn't have pain in my salivary glands. (Though I did get those annoyingly painful little blebs on the tip of my tongue, and still do.) It may well be that you'll need a bit of extra medical help. However, the best way of dealing with any auto-immune disease is first of all to accept it - hard as that may seem - treat the symptoms as far as possible, and learn to live with it. Unpleasant as it is, it's not a fatal disease and long-term, or even permanent, remissions are common.

I was diagnosed by a cornea specialist.  I had problems that continued for almost 2 years and when the regular eye doctor came to a loss of help, he sent me to the cornea specialist.  We have 3 Kellogg Eye Care Centers in the US and I know in Europe there's many, many more than 3.  

After being dx'd with sjogren's, I was sent to a specialist that helps with special lens'.  The len's are so huge (covering all the color of the eye and almost all the white part you can see of the eye).  The "prose" lens' help lubricate the entire eye for 8-10 hours then they  come out for a bit of a rest.  It took me almost 6 mths to learn how to put them in (it's totally different than regular contact lens'), plus along with learning how to put them in, the care of them as well.  This is not to say that it's a cure-all but it helps.  During nighttime, I put ointment in my eyes to help lubircate them, however, mine are so intensely dry, even the ointment is questionable.  I'm now suffering from both my corneas scratched from the dryness and the eyelids actually stuck to my eyeballs that scratched the corneas.  I'm on the mend!  

On a positive note, the prose lens' also give you 20/20 vision so when I wear them, it's like I'm young again  That's the bonus along with the eyes feel so much soothed with the lenses.  You may want to ask your doctor to refer you to a cornea specialist (anyone with severe dry eyes should ask for a referral and that doctor will dx you with this awful affliction).  The cornea specialist will know if you have the disease thus refer you to the prose lens specialist.  

I hope you're feeling well and that you find help to guide you with your dryness.

Warmly,

Frustrated

My diet is extremely boring as I can only swallow fluids - making soups, egg custard, scrambled eggs, some tinned fruit chopped up. I don't smoke or have any drinks with Caffeine as these are dehydrating, I don't drink alcohol so that's not a problem. I haven't been given any medication so far just the mouth gels, toothpaste, pastilles and mouth spray. I hope to get something to help manage the condition on February 4th. I haven't ready where anyone else has not been able to swallow - am I the only one out there? I read that Lily65668 had her problems come and go, mine are with me all the time and I find it difficult to speak for any length of time. I started taking Thyroxin last year which I believe is also needed for hypthyroidism - another autoimmune condition. It seems that Dr's cannot diagnose this problem easily and a Rheumatologist visit is required.

Reading the replies has been very helpful,  I was feeling very down and worried about managing this condition - also angry at getting it. Still I will try to be positive and adjust my life accordingly

It is my understanding that the Specific blood test for Sjogrens is SSA. Try researching that and see what you come up with. Also, I experienced the itching and feeling like I was getting pricked with needles burning on the bottom of my feet tingling sensations etc. My doctor explained it as Peripheral Neuropathy again research. I experienced my eyes feeling gritty, dry mouth, dry skin, changes in my hair, loss of smell, loss of taste, vaginal dryness,jaw pain, neck pain, severe joint pain,restless legs,stomach issues, constipation , headaches,pain between the shoulder blades and shins. Any of this sound familiar? Oh Yeah and crushing fatigue. Most helpful book has been "Coping with Lupus" by Robert H.Phillips. Specific info on Sjogrens and more.

Read this book the information is excellent  Because the symptoms come and go in what I now know are "Flares" . A person does start to wonder if it is a mental issue. I had to advocate for myself to get a proper diagnosis and in order to do that you have to use all the resources available to you to educate yourself. Currently on 400mgs a day of Plaquenil. First it makes you sick. But if you power thru that and can tolerate it you will start seeing the results it takes about 4 to 6 months to see results although it had positive effects on my nerve discomfort immediately. I notice improvement every month it may not work for everyone but it is working for me. I take Ibuprofen to manage the pain I have learned to manage it rather than react to it. I drink tons of water,and feel better when I am well hydrated. In the book you will find suggestions to improve your diet this has helped me. Biotene makes a spray you can use when you feel like your mouth is getting dry and you worry about bad breath. You can find it at Walmart in the toothpaste aisle. For vaginal dryness I found a natural waterbased personal lubricant at Whole Foods Stores and dab it on before I go out, helps with the irritation. My diagnosis is Sjogrens and a mild Lupus. Read read read and advocate for yourself. If I can do it so can you!