Scleroderma & Raynaud's UK (SRUK)
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Eye problem

I was diodnosed with Crest Syndrome about 2years ago . I'm a patient at Chapel Allerton Rheumatology department and not due to be seen again till July .

For the past few months my eyes have been stinging when I wake up on a morning and for the last 6 days I'm unable to open my left eyelid when I wake up however this only last about 5 minutes then opens naturally. My eyes do not feel dry does anyone else have these symptoms or know why this happens.


7 Replies

I haven't heard of this but you should go to the doctor. Or even the optician. They should be able to advise you.


Thank you Irene I have an appointment with my gp 26 th April is the earliest I can get in. Hope they can sort it out . I have not heard of this problem before, but hey oh just another one to add to my long list of symptoms just got to keep smiling 😊😊😊 . Hope you are doing ok .


Hello Banker 123

I'm at the same stage as you with this strange disease. I was diagnosed with Crest Syndrome in 2015. On my second visit to Rheumatology the consultant said my Crest Syndrome was overlaid with Sjogren's Syndrome - he said this showed up in blood tests and would cause dry eyes and/or dry mouth. I didn't have these symptoms at the time but weeks later my eyes started behaving just like yours. The symptoms come and go sometimes it's just one eye and now it happens to both. Also when my eyes are sore they look like I'm wearing brown eyeshadow, bit like having a black eye. Very occasionally I wake in the night to find my mouth and tongue really dry and all stuck together. Very odd. I've sort of got used to it now. Hope your symptoms are manageable - it seems to be an unpredictable illness that we're stuck with. Best wishes to yuou.


Thanks Betsie , I also suffer with dry mouth and find that I need to carry a bottle of water with me at all times 😒 This helps but is only a short fix I also have lots of problems with my teeth mainly fillings , my dentist has prescribed me toothpaste with extra fluoride.

Hope the gp I'm seeing on the 26th can give me something for my eye 😊.

Keep well x

1 like

Hi Banker 123

I have had mixed Connective Tissue Disease for many years and part of this is Sjogren's, I have extremely dry eyes and Blepharitis which causes the lids to be sore and red making me look like I have been crying. I read an article on line that Coconut Oil (Virgen Organic) is good so tried using this at night just a small amount massaged into the lids, I think there is some improvement so will keep going.

For my dry mouth I have been using Xylimelts that my dentist recommended, they are a tablet that you put on the upper gum and it adheres and stays in place all night and in the morning it has gone, my mouth feels so much better and fresher tasting. They come in mint or natural and can be purchased from they also stop plaque building.

I hope this info is helpful good luck.


Well, snap! I was at the same hospital last month, and some interest was shown in my dry mouth and eyes. I do have to sip water continuously, and recently realised my dried out mouth/ shrivelled tongue in the morning is not due to sleeping with my mouth open. It doesn't bother me as much as the secondary Raynauds, but getting to swallow properly in the morning takes some time, and it's a struggle to keep weight on.

I'm labelled as CTD plus raynauds but not too worried about what it's called as long as I have treatment and follow ups.

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Thank you everyone for your replys 😊 I went to the opticians yesterday he said my eyes are very dry and gave me Aqua Drop he recommended that I use it just before I go to sleep at night , he also said that it was probably caused by Crest Syndrome 😒.

I see my gp next week so I will ask for advice on dry eyes .

Stay safe and be strong everyone

x .


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