Can an ophthalmologist diagnose the possibility of Sjogren's?

I agree with you Lilly. My rheumatologist doesn't know about the CNS involvement in SS and wants to send me to a multidisciplinary team in London because she thinks I am too complicated! London is 90 miles away and whilst I will go of course it seems so silly when all the information is available on the BSSA website.

I cannot open my dry eyes in the morning because my eyeballs are stuck to the inside of my eyelids so I have to squeeze drops in first but there has been no mention of my seeing an ophthalmologist. I will have to push for that I think because my left eye feels as if it has lost some skin. I am weary of having to push for every little thing, it is exhausting and they should know what to do!!!! Sorry, rant over.

Hi Maggie,

I can really sympathise with that thing about waking up with your eyelids stuck to your eyeballs. It's horrible, isn't it? Especially if you're getting it in both eyes at the same time. I went through a phase of that, but fortunately only in my right eye. This was a year or two after I got my first SS symptoms (dry mouth and a first-tingling, then-numb big toe). The eye used to bleed at the outer corner sometimes too.

Strange as it sounds, I didn't even recognise it as being due to dryness at the time. This was still 3-4 years before I'd started to suspect I had SS and 6-7 years before I got diagnosed. It was my GP who explained it was down to dryness, and told me to use OTC eyedrops regularly. It clearly didn't occur to her to make the connection between this new symptom and the dry mouth and peripheral tingling sensations I'd reported several times in the previous year or so. She just said all three were down to old age, as I was in my early 50s. In all fairness, I still hadn't figured out it was SS at this point either - but then again, she was supposed to be the doctor!

Fortunately, the extreme dryness in my right eye cleared up after about six months - during which time I got two attacks of conjunctivitis - and has never returned at that level. These days, it's the other eye that's most affected. That's how SS goes with me - moves from one symptom to another and to alternating parts of my body. At the moment, I'm still able to manage it with OTC drops, but I'm now using a different, superior brand recommended by a UK optician. They're more expensive than the basic stuff, but I don't have to use them so often and they don't sting at all.

Another thing that an optician recommended when I was in the stuck-eyelid phase was to apply moderately hot compresses to my eyes every morning. They just made my eyes more sore, without relieving the dryness, but I've heard that they work very well for some people.

As you're in the UK, I'm wondering whether you've consulted an optician about this? They're very good, and don't just do sight tests. They can do the basic test for dryness and will write to your GP if they feel it's serious. This might just get things moving.

I hope you can start finding solutions soon, or alternatively, that your dry eyes will go into a long remission, as happened to me. Incidentally, that can be a problem too. In some people the physical signs of SS (as well as the symptoms) can temporarily disappear almost overnight, making you look a liar when you finally attend your hard-won consultation with a specialist. Only to return six months later when you've been "cleared", of course. I'm afraid the frustrations of being an SS sufferer can be endless.

Thank you Lilly. I have tried numerous eye drops over the past twenty years or so, even the ones made by Moorefields Eye Hospital for post op patients but they really made my eyes sting so I have settled on vscotears or blink plus both preservative free which makes them more expensive, boo boo! I am ok during the day as long as I keep applying them but the morning is the pits! I bought a mask with heat pads to wear at night but that didn't work sadly. One thing that helps is chamber glasses. They keep out the wind, dust and pollen and are a godsend as I am out a lot with my dog in all weathers.

When your eye bled it must have been very scary! What did the GP say about that?

I see an optician every six months as I am taking hydroxychloroquine and she hasn't said anything yet about any dryness damage but it just feels damaged. Probably my imagination.

All the best, Maggie

Hi Maggie,

I'm surprised your optician hasn't said anything about dryness. My UK optician always does the test for dryness on my yearly visits. Two years ago she asked me to come back after six months, as the dryness was making my vision very blurry in my left eye, and she said I was getting to the point where I could be at risk of abrasions. However, after six months of using the drops she recommended, the dryness was back to "normal" levels (for me, that is). Maybe you should ask about this.

What did my GP say about my super-dry right eye bleeding from the outer corner all those years ago? If there are other members of the regular SS crew reading this, I can just hear the answer coming from some of them in chorus. So... altogether please: "Old age"! These boards are littered with tales of people being told their SS symptoms were all down to old age, even when they were only in their 50s. There've even been reports of rheumatologists and ophthalmologists saying the same thing, not just GPs.

Just to clarify: my eyeball wasn't bleeding. The bleeding came from cracks in the skin at the outer edge of my eye. The hot compresses made them worse. I'd had the same painful cracks at both corners of my mouth a year or so earlier, when my mouth was very dry.

The eye cracks come back from time to time, always when my eyes are dry. I just ignore them, and put in my drops more frequently. I've had this on and off for the past 20 years now and I know they'll eventually heal. Fortunately I've never had a repeat of the cracks at the corners of my mouth. That was incredibly painful, as they'd open up and bleed every time I tried to open my mouth to eat. I saw my GP and two dentists during the 6-12 months this was going on, and none of them had the faintest idea what was going on.

I too wear industrial goggles when I go out in exceptionally cold, dry, windy weather. I got them from my UK optician, so they're optically correct. I agree, they're a godsend, even if I do get a few funny looks. (My compatriots are less polite than the Brits, and don't hesitate to stare!)

I dealt with my eye doctor for several years with him trying to treat my dry eye. And he really started making me angry and I finally just fired him and found a new eye doctor. And I also went to see an ophthalmologist on my own. I can do that because I live in the US and not even my insurance requires a referral. He put plugs in my tear ducts. That supposed to help my dry eye. Between that and the Restasis drops and just standard lubricating eye drops all day my eyes are doing okay now. My mouth is another story. My rheumatologist tried both of the drugs that can help with dry mouth and neither of them was going to work for me.

All that being said I do not have a positive test for a Sjogren's syndrome. But my blood test came back negative too. But in a couple of weeks I am scheduled to have my lip biopsied. And it's my understanding that that's a better test to determine SS.

Thank you both for your helpful replies. I too had cracks at the corners of my mouth due to oral thrush caused by mouth dryness I believe so I used canesten cream which worked a treat, not in my mouth but on the corners! I now take 4 coconut capsules daily and it has helped keep the oral thrush away as it is antifungal.

I will speak to the optician about the eye dryness and relate my fears because my left eye in particular really doesn't feel happy at all despite all the drops and gels and the vision is very blurred. I have cataracts getting worse very quickly which she said is due to systemic disease so she needs to be on the ball me thinks! Maybe it is time for eye plugs, I will discuss that too, thank you.