i got told i had sjogren.s last fri and feel a bit lost

[xangx]

i went to eye infirmry got gel 4 day and cream 4 nite and eyes are still so sore somebody tell me in gets easyier . does anyone feel very sniffly and full of flu when use gel . rhemy wanted 2 put me on steroids for 3 mths i havnt took them as know will gain weight .

[adleybra]

It is quite a lot to take in at first. So many questions to worry about. Everyone has such different outcomes. Take care.

[grahamb]

I was diagnosed about 5 years ago. I remember having those same thoughts, and being depressed for several months. I chose not to take any meds for it and never have. Last year I put together a wix website that covers some of my strategies - which you can find here: naturesquared.wix.com/sjogr....

It's a little out of date now, but I think you may find some helpful tips. Not everyone experiences the range of symptoms in the same way, so I recommend getting a kind of Sjogrens diary going in which you write down the weather, temperature, wind direction for each day, along with what you did, and how your body is behaving. This year I purchased a digital weather station which keeps track of temperature and humidity in my home and I've found that keeping the temperature at around twenty degrees celsius, and between 50-60% humidity keeps my symptoms well in check. Too much exposure of the eyes to bright light via sun or computer screen isn't good, cold wind is bad for everything, so keep an eye on weather forecasts. It seems like a lot at first, but if you just focus on one thing at a time, it just becomes part of your routine after a while. It's not a fun journey at times, but when you find a way that works for you, it's a very liberating feeling. And those who live with SS have a much deeper understanding of it than the medical professionals, so keep making good use of the web! Hang in there, and have the courage to try things

[xangx]

Thank you for your kind comments and your idea's .ur right about professionals my doc said what problems does it cause u look okay x

[arcdeciel]

I have found that my eye discomfort varies. If your eyes are bugging you now, it may ease off again.

[Okebro]

Like everyone said, it can be really overwhelming at first, more so as it is so different for everyone. So finding what works for you is trial and error. I found that everything I put in my eyes hurt, even the most recommends brands, at first. I found Bion Tears best for me. They feel like the real thing. I go through a lot because it is just drops not a gel, but I find gels and ointments really uncomfortable. In Australia Bion tears are on the PBS so if they work for you you can get a script and if you use a lot like me, tell your doctor how much your using and they should be able to get a months worth on each script.

If you don't want to take the meds read up on other options. Taking fish oils and olive leaf extract and other antioxidants seem to be a well received good place to start. I would also recommend a good multivitamin everyday as well. With the symptoms of Sjogren's you don't be be low on energy or natural defences that you can avoid.

Good Luck and welcome.

[willybilly]

It does not get any easier. My eyes and mouth are so unpredictable that I can never tell if anything I did really helped. Sounds silly but they vary in feeling all the time. sometimes drives me crazy. Aileen

[Spice]

Hi xangx You could try wrap around glasses that hug your face. Dont know if you wear glasses but even if you don't you could wear clear lense wrap arounds (safety glasses)as it creates a small microclimate so that your eyes aren' t dehydrating so quickly. Also for computor users. I was at an SS seminar in Auckland New Zealand and the Rheumy told us to lower the computor screen so that your eyes are looking down at it which means your lids are covering the eye more and also you can download an eye that blinks to remind you to blink as most people not just SS people don't blink as much when they work on a computor.

Good luck