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Sjogrens...is it the beginning?


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#1 Amanda Thorpe

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Posted 12 November 2008 - 02:22 PM

Hello All

I am sure I read on a site I can't now find that detailed loads of personal sjogren's stories that in the beginning things can swell up and be painful.

My question is this, my eyes have been painful for weeks, feels like it behind the eye, and tonight they are swolled, particularly the left which is of course more painful. They are not dry the left is almost filmy, the vision won't clear. Reading close up is weird as it looks like the print is shuddering. According to a recent eye test my vision is perfect as is the health, no glaucoma.

Any guesses?

Thanks. :)
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#2 nan

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Posted 12 November 2008 - 03:26 PM

I have Sjogren's. My eyes have never become swollen. They are just super dry and so is my mouth. But, it affects different people differently. I would have your eyes checked by an opthamologist.
Take care,
Nan

#3 Shelley Ensz

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Posted 12 November 2008 - 03:46 PM

Dear Ohboy,

I don't know what it would be, and please keep in mind I have no medical training at all; but I presume it would likely not be Sjogren's if you've had a recent eye test that is good, with no tear film problems. Also, Sjogren's involves a lot more than just dry eyes. I've had Sjogren's for a very long time and I have never had swollen eyes or shaky vision caused by it. If you hold things too close to your eyes, they may shake due to the eyes trying, unsuccessfully, to readjust to the improper distance. If they don't shudder at a reasonable or normal distance, then, my guess is, that the shakiness would be caused by the distance (and not by a medical concern.)

Swollen eyes (as opposed to swollen eyeballs, which I wouldn't know about) can be caused by things as simple as crying or allergies, and a passing disturbance is likely to clear up quickly. A temporarily filmy eye can be caused by something as simple as rubbing our eye, with the natural oils from our face or finger getting into the eye. Eye infections can also cause a discharge which makes for blurry vision. Since your eye tests were fine recently, if this doesn't clear up, perhaps you should see your primary doctor about these new issues, and let us know what you find out.
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#4 Wohali

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Posted 12 November 2008 - 04:11 PM

If your eye gets to hurting bad you should have a doctor have a look at it. Have you been out in the wind and possibly gotten some grit blown in your eye? That sort of thing is common happening where I live... got caught out in a dust storm and a cinder scratched my cornea. Also my cat scratched my cornea about 2 years ago and after the infection cleared I had keratitis for many months. The keratitis made it feel like something was in my eye, in my line of vision and seemed like I couldn't quite get things in focus. Sometimes I also got dry eye from it. There are several things that can cause keratitis. A good dr can look in the eye and tell. They view the eyeball by putting this orange oily goop in the ol eyeball then viewing it through a special scope so they can see if there is a small irritation.

Just a thought.

#5 canon

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Posted 12 November 2008 - 04:14 PM

Hi ohboy,

Sorry your eyes hurt and are swollen. Swollen eyelids or around the eyes can be from non sclero things too like liver problems and some heart problems. I think there are probably many things like foreign objects too. I am not a doctor and can only guess to help you brain storm. Can you call your Rheumatologist especially if you think it is a concern? The inside of my eyes (corneas) are swollen not the outside however, my lids are tight and fibrosing according to the opthamologist and the eyes hurt inside. They are quite dry and have areas of dead cells on the cornea too. He took alot of pictures and used alot of litmus strips??! They have me using artificial tears and plan on putting plugs in my eyes to hopefully correct the dryness if everything looks better next week.

Medications can affect the eyes also, like plaquenil. They have some good articles here on their medical pages too that might help you. Did you have the problem when you saw the eye doctor with the last visit? If not, give him/her a call too. I'd be interested to know how things turn out for you.

With gentle thoughts.

Judy
A happy heart is good medicine.

#6 debz

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Posted 12 November 2008 - 04:28 PM

Hi Ohboy,

I have sjogren's and ? about scleroderma, or other connective tissue disease. Please keep in mind I am not a medical professional and as others have pointed out everyone is different with how these things affect them.

I began my sjogren's journey with pain behind one eye. No one thought it was sjogren's as I presented in an atypical fashion. A very astute general practitioner thought I may have a corneal ulcer and put dye in my painful eye. It all clumped and it was then that the dry eyes were discovered. I had been seeing a rheumatologist who took me off plaquenil in the December (it was April when the eye pain started) and I had thought everything was good.

The sjogren's was later confirmed by an opthalmologist and then my current specialist (he has now retired) and no other explanation could be given for the pain behind my eye. Once I received correct treatment the pain went (I was on steroid drops for 2 weeks, then replacement tears during the day and gel at night). I do get swollen eyelids from time to time, especially the skin under my eye...feels like someone has punched me!! My eyes blurr constantly, and again there is no rhyme or reason for it!

I do think you should go and see a doctor about the pain behind your eye and get it properly checked, as it could be a number of things. I just thought I would share what happened to me with my presentation of sjogren's as we are all very different. Surprisingly, my dry eyes and dry mouth now are the less severe of my symptoms....Oh how things change!!

Hugs Deb

#7 Amanda Thorpe

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Posted 12 November 2008 - 06:06 PM

Hello All

Thank's for the replies! I love that people take the time to get interested and reply. Did you like the dramatic my eyes!...my eyes!...I'm a drama queen...drama queen!

Probably being one here except that having had an atypical presentation of sclero I suspect the same for anything else that may come along.

Thank you Debz, I knew people's eyes could be painful, swell and vision blur. My vision blurs for no reason and under my eyes is also swollen right now. I will make an appointment to see an opthamologist. Can I ask when the dry mouth started in relation to the dry eyes? Last year dry mouth started and I bought artificial saliva but it improved once I started other meds. Having said that over the last few days I have been unusually thirsty and dry.

I don't want to have sjogren neither do I want this eye pain to continue undiagnosed which therefore means untreated and so then it continues.

Thanks again and I'll keep you informed, possible diagnosis sjogrens wanna be! :lol:

Amanda
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#8 Guest_Soaring Eagle_*

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Posted 12 November 2008 - 07:43 PM

HI, Ohboyoklahoma!

I just had my diagnosis of Sjogren's secondary to systemic sclerosis confirmed/finalized this week. My eyes aren't swelling, but they do feel very gritty, and I get filmy vision when trying to read that you also have described.

I think the thread you are looking for is PSS and Sjogren's. I started it on October 9 when my GI doctor said he thought I might have Sjogren's. There are 2 pages of responses. I just wrote a response to the posting by Mando. I've been working long hours and feeling so sick by the time I get home that I haven't visited this website in a couple of weeks.

Anyway, I saw your posting saying you were looking for the discussions on this, and I just thought I would let you know that the PSS and Sjogren's thread may be the one.

I hope your eyes get to feeling better.


Soaring Eagle

#9 jefa

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Posted 12 November 2008 - 10:10 PM

Thanks, Soaring Eagle. Here is the thread you referred to:

http://www.sclero.or...?showtopic=6501
Warm wishes,
Jefa

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#10 debonair susie

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Posted 13 November 2008 - 06:13 AM

Hi!

Of course, ultimately...your best course of action is to see an eye dr, as has been suggested.

As has already been mentioned, it could be anything.

It could be conjunctivitis...or you could have a stye, or something may be IN your eye.

Let us know what you find out?

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Susie
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#11 CraigR

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Posted 13 November 2008 - 09:05 AM

No swelling or pain here - just dry, dry, dry!

Dry mouth was far more obvious at the beginning than dry eye, especially when taking a walk outside, when humidity was low.

My optometrist told me that I had a severe lack of tear fluid long before my eyes truly felt dry.

Sjogren's usually makes it very difficult to eat dry food. You never knew how important saliva was! My favorite "test" food is Chinese fortune cookies. Couldn't possibly get one of those down without a glass of water!

Craig

#12 Amanda Thorpe

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Posted 13 November 2008 - 12:44 PM

Thanks for all the replies.

Soaring eagle I remember this thread as it had so much information. I did find the website I was referring to which is a collection of people's experiences of sjogrens, there is a link to it in the personal stories for sjogrens.
In the stories people mention swollen eyes and pain as being early symptoms.

Of course I need to see what my rheumatologist says in 2 weeks time. I just never want to be blindsided again by an unexpected diagnosis, I would rather go in thinking the worse and being told the best.

I will advise further...to be continued.

Amanda
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#13 debz

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Posted 13 November 2008 - 01:34 PM

Hi Ohboy,

In answer to your question with the dry mouth and when it started in relation to the eyes.....around the same time. I say that it was around, because it sort of crept up on me! I found myself drinking alot of water and especially when I ate and also found that my diet changed somewhat. I tended to eat foods that were easier to go down....really without realising all of this. I was very unaware of the connection with my 'inflammatory poly arthritis' as diagnosed by the first rheumatologist and the dry eyes/mouth connection - a little dumb I know, but I never thought they were connected until the general practitioner I saw while on holiday (the one that discovered the dry eyes) explained it all to me. It was then that I realised just how dry my mouth was and of course when I saw my dentist not too long after that, he confirmed the dry mouth....also the amount of cavities and crumbling teeth! I am terrified of dentists too!!

I hope I have helped in some little way! Let me know what the doctor has to say about your new symptoms. Take care,

Hugs Deb