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  • Hello, pleased to have found you all.

    Hi there,
    I'm Jaye and I'm pleased to have found you all.
    I have Sjogren's Syndrome (showed symptoms about 12 years ago, but diagnosed 7 years ago) so my eyes are very dry, and unfortunately my eyes produce no tears at all. I would cry about it if I could! I can even hear myself blink, anyway I'm now past feeling sorry for myself I'm here to find tips on management for my eyes and (hopefully) share tips that I have discovered along the way that helps me.
    I have been reading a lot of the posts already and found some very useful information, mascara for one...I've worn makeup since I was 14 (I'm 49 now) and have been so reluctant to give up mascara, but since reading the posts I'm trying without it...eeek!....as the penny has finally dropped that the bright bloodshot eyes covered with smudged mascara wasn't really the look I was going for anyway!
    A tip I do have (which I'm sure a lot of you do already) is using heated microwave rice bags on the eyes for a few minutes each day (morning and night if poss) and then I find gently massaging around the eyes afterwards helps me a lot and is lovely and soothing, and the great thing about these little rice bags is you can easily make them yourself, no sewing needed - just fill two new (or clean!) 100% cotton socks with dried rice (don't add too much so it stays flexible) then tie both the tops together with either a piece of cotton ribbon (or use some other natural fabric to tie - any excess sock can be cut off and discarded, don't make the bags too big or heavy as you don't want them pressing hard on the eyes and they won't balance if too big, think teeny weeny eye size small! - baby socks would be great, also very important, please check the fabric is 100% cotton or a natural fabric so they can be safely used in the microwave).
    To use: heat both bags together on full power (based on 900 watt) for a maximum time of one minute, you will need to play around with timing though as microwaves vary but I usually find 40 seconds is plenty warm enough, check not too hot (your aiming for warm, not hot) before placing on closed eyes, and relax for however long you've got, or until the bags cool, but if your rushed 5 minutes will help. If you don't have a microwave you could try placing them on a hot radiator for a while to gently heat.

    Hope this helps someone as it does me

    Right enough of me rambling on, I'm off now to read some more posts
    Best wishes,
    Jaye

  • #2
    Hi Jaye, Very nice to meet you and very welcome. Just wondering if you have a confirmed diagnosis and other symptoms of Sjogrens, and what other treatments you are using? Meibomian gland treatment is obviously helping you. We are particularly wondering what eyedrops the different hospitals are recommending these days - we are using Celluvisc and Hycosan through the day but looking for something like a gel for overnight.
    Paediatric ocular rosacea ~ primum non nocere

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    • #3
      Hi, yes had a firm diagnosis with lots of blood tests and it showed I have Sjogren's Syndrome secondary to Rhumatoid Athritis, which thankfully (fingers crossed) I don't have any physical symptoms of at present. Other symptoms I have is no moisture to my mouth and dry skin all over which i'm constantly moisturing, the dry mouth is an absolute nuisence as I cannot swallow any food without sipping water at the same time, I have also had to re-learn breathing through my nose again so I can keep my mouth shut to preserve any tiny bit of moisture left and of course I have to be extra careful with my teeth (which I'm quite fond of keeping !) as having no moisture in my mouth means my teeth could decay much more easily but I control that by brushing more often throughout the day and my dentist seems to be happy...well he would be wouldn't he thinking of all the future fillings etc he'll be doing only joking, no offence meant towards any dentists reading! The dry mouth and dry skin I can cope with (just!) but my eyes are a nightmare as so hard to deal with as they are constantly sore and irritated with a horrible gritty feeling, and suprise suprise they are incredibly sensistive to any changes in light and have a horrible menthol cooling feeling to them - I've not painted a pretty picture of myself at all have I, ha!. It also doesn't help that I work on a computer all day, no avoiding that i'm afraid but I have reduced my hours to working three days now which helps as my poor eyes couldn't cope with the five days as before but I make myself take lots of breaks.

      As for taking meds for my condition I only use eye drops and also Glandosane artificial salivia for my mouth (I know...yukk!) I don't take anything at all for the Sjogrens or R.A. and have never been offered any from my doctor or Rhumatologist so I rely on self help treatments. The only help I was given was to try lots of different eye drops until I found one that suited me, I have practically tried them all and I still haven't found one that doesn't irritate, or leave my eyes so blurred that I can't function, so at present I am back to using Hypromellose eye drops (which I add still irritate) and in between I use the Optrex Actimist Eyespray which you spray over closed eyes to make them feel refreshed - lasts for a few seconds anyway which helps when your desperate! My Doctor also said that some eye drops can change your white blood cells but the Hypromellose ones don't, so I have kind of stuck to them most of the time. I have no idea why this is though.

      Best wishes,
      Jaye

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      • #4
        Hi Jaye
        Intrigued about which eye drops change the white cells, yikes!
        Like you I have tried most of them and to be honest do not find any of them helpful, just irritating. I too have auto immune issues, supposedly sjorgrens diagnosed at lip biopsy and anti phospholipid lupus anti coagulant positive. I hate the gritty feeling, it drives me insane and I am just hoping that eventually I will "get used to it", having had problems on and off for some years now. Unfortunately I have now lost a lot of my teeth with very visable gaps and cannot wear dentures as my mouth is just too dry and ulcerates with the dentures in! I still look quite young for my age (47) with nice long hair and although my skin is super dry, it looks half decent. I can not wear any make up but luckily I am a bit of a natural bird, so not too downhearted. Do you find anything that particularly helps with the gritty feeling? Do you have periods when your symptoms are not too bad?
        Happy hunting
        Lulu

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