I have suffered with Raynaud's and Scleroderma for nearly thirty years. I am now wondering if I also have Sjogren's Syndrome. At the moment my eyes are very painful and as much as I hate to moan about the sunshine I am finding that my level of tolerance to light is not very good. I do wear glasses and they are tinted to go darker in the sun. My eyes are not watery, they are far too dry for that. I work part-time but my job is computer based and I'm finding it very difficult to look at my screen and keep my eye lids open.
I also get a very dry mouth and find I'm having to take a bottle of water with me everywhere. I wake up several times during the night and my mouth is so dry that the inside of my cheeks are sticking to my gums and teeth, but fortunately I do keep a bottle of water by the bed to sip.
I have my symptoms written down for when I go to see my Rheumatologist but my appointment isn't until November but I wondered if anyone has any suggestions that might help the pain in my eyes.
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JaneP
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It definately sounds like you have Sjogrens Syndrome.. secondary to Scleroderma, I think you need to go to your GP or see if you can bring your Rheumatology appt forward.. if necessary try and speak to one of the specialist nurses at your hosp. There are plenty of saliva stimulants that you can use during the day and night and you can get them on prescription. I go to Moorfields eye hospital and the Eastman Dental hosp who actually diagnosed the Syndrome..
Hello, I also have Raynauds, Scleroderma and Sjogrens. I attend Leeds Dental Hospital where they are very helpful with the Sjogrens. I take Pilocarpine Tabs 3 times a day and they really do help with the eyes and especially the dry mouth, I know exactly what you mean about the cheeks sticking to you gums and teeth, this no longer happens since taking the Pilocarpine. The tabs do make one sweat at first, especailly around the hairline, but most of this disappears after a couple of weeks. I use eyedrops during the day and eye oint at night, they both help. I aslo use bioextra gel last thing at night for the mouth
I'm a newbie to this site, and amazed that so many people have Sjogren's too. I've been diagnsoed with Sjogren's for 4 years and Raynauds for two. I suspect I now have scleroderma.
Anyway, back to your symptoms: I use single dose preservative eye drops, and Biotene Saliva replacement gel. In addtion, I take hydroxycholoroquine, which is meant to be a systematic treatment for Sjogren's.
I'm another West Yorkshire person. I see a dentist once or twice a year, and have been to a local dental hospital once, but don't have routine appointments there.
When my eyes were at their worst, they used to close, which I found very scary. With regular use of drops, they don't do that so often.
In relation to Sjogrens I should also have added that I have had plugs put into the bottom drainage holes in the eyes and the top hole of the right eye cauterised. For the mouth, I had a test for thrush which was positive, my mouth was always very sore. I now have a monthly bottle of Nystatin Oral Susp. which keeps the thrush at bay, and makes a gin and tonic much more enjoyable.
Many, many thanks for your comments and support. I have taken notes of all your suggestions and will endeavour to get my appointment at the hospital brought forward. It is uplifting to know I can discuss my symptoms on this site as I have been feeling so down lately that it's really been impacting on my life. I have been using Optrex eye drops for dry eyes, but unfortunately that didn't make any difference whatsoever so I had last week off work as annual leave to see if a week away from computers would make a difference, but again it didn't. I was so desperate yesterday as the pain was so bad, hence my blog.
I just had to respond because I've spent the last year wondering if I had Sjogren's, too. I couldn't stand the eye pain and redness anymore so I went to a local opthamologist. Much to my chagrin & surprise it turned out be glaucoma! I was shocked. I knew nothing about it, knew a tad about cataracts but thought old people were the only ones who got glaucoma. I sit in a darkened room most of the day, do my computer stuff w/sunglasses on, etc. The light is a real killer. I've had one eye lasered to relieve the pressure, the pain in that eye is almost completely gone but my left eye (undone) is still bothering me a lot. I get that one done on the 3rd of December.
Of course, I could be totally wrong and you might be 100% right, but I had to let you know this just in case.
I'm so sorry to hear of the experience you have been through and thank you for getting in touch. I've always been over cautious when it comes to my eyes and make sure I have them tested annually as my Nan had glaucoma and I think once you have seen someone suffer with the condiiton it certainly makes you aware.
I saw my optician three months ago and was told my dry eyes was because make-up had got into my tear ducts! As I hadn't worn make-up for about a year I think it's possibly time I change my optician.
However, I have seen my rheumatologist who is sending me for further tests - the same week you have your other eye done.
I am trying to be very positive at the moment even though I am losing so much weight as I can't eat properly as my food gets stuck because I get so dry, but I've been prescribed an artificial saliva to spray which helps a little before meals, but I think the worst of it for me at the moment is the pain in my mouth as my teeth are becoming lose and crumbling so I have quite a few months of dental work ahead of me. Fortunately I do like soup!
I hope all goes well for you on 3rd December, you will be in my thoughts.
Oh dear, teeth are almost as bad eyes! Both are quite necessary. I guess you're a step ahead of me in the eyeball dept, glad to hear you saw someone even if he/she didn't know what they were talking about. Yes, it's time to change...I'm changing my GP, changed my neurologist, need to change my gastroenterologist, too. I hate change, the only thing I change comfortably is my unders-so this will be a big deal to me.
I have trouble swallowing, too, I use artificial saliva when needed so I know what you mean about food getting stuck. My cousin has Sjogren's, she's pretty ill, as well.
I hope all goes well with your testing & that you get a clear diagnosis instead of the muddled messages I get. Usually it's just, "I don't know" - that's frustrating.
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