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Sjögren's Syndrome Message Board
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Old 08-23-2010, 12:49 PM   #1
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Dry Eyes/Lips - Possible Sjogrens? looking for support

I recently posted a thread under the dry eye board and have researched Sjogrens and i think i might possibly have it. Im looking for others with dry eye/ redness irritation problems to talk with. Im so sick of trying to figure out whats causing my dry eyes. I saw an Opthamologist who saw me over the last 6 months who never even mentioned Sjogrens or cared to refer me to anyone else. Now im stuck with a $600 bill and the worst dry/red eyes ive ever had. I cried all morning long until i logged on to this board because i cant go on another day with eye pain. I got sick of applying eye drops and Im not even sure if they are helping or making my eyes worse. Im looking for others to chat with, P

MarisainCA

Last edited by moderator2; 08-25-2010 at 09:09 AM.

 
Old 08-28-2010, 06:47 PM   #2
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Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

HI, I have the same problem. Not only eyes and lips, but also arms, neck and under the knees sometimes.
Right now, my lips and skin around the lips + my eyes are dry and irritated for over 6 months. It's never been so constant, though I have had allergies for over 10 years. I hope there is help out there, because it is extremely painful and simply frustrating. I'm trying to hold on, but a thought that it's gonna be like this all my life sucks...
The only thing I can suggest is creme with high amount of cortizone. But at the same time, doctors say that you can't use it around the eye.
try figuring out what is the allergy for. since you have it around the mouth, I think it's something that you eat. You must eliminate things like citruses and see how you doing without them.
I was also thinking first that computer causes my eyes to be irritated. Now I'm thinking about the A/C. My A/C is really old and I'm sure it needs some cleaning....

Hope other people reply as well with help...

 
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Old 08-30-2010, 09:20 AM   #3
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Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

How frustrating! Did your Ophthalmologist give you a prescription for Restasis or even mention it? I was going to suggest getting a second opinion from another Ophthalmologist, but with all you're going through, I say go to a Rheumatologist. They can do blood work to diagnose you.

I've read it can take years to get diagnosed because a lot of people have dry eyes, etc., but don't necessarily have Sjogren's, and doctors seem to brush it off. I just got diagnosed this past April. I saw my eye doctor for a checkup and mentioned I'm being tested for Sjogren's. She didn't say anything. She knew my eyes had been dry and said lots of people have dry eyes. She gave me a different brand of contact lenses to try and mentioned some people just can't tolerate contacts, not even suggesting it might be Sjogren's! I went for a follow-up after being diagnosed, told her, and she just said my eyes must be really dry then. No kidding! I switched doctors.

I also have dry mouth, which not everyone with Sjogren's has, but it's common and you can still have it without dry mouth. I told my dentist I was being tested and he was surprised and said lots of people have dry mouth! He mentioned it could be from medications, brushing it off like it was weird I was being tested. My gynecologist was also surprised I was being tested and acted like it made no sense! So all these doctors acted surprised and I do in fact have it!

I started having symptoms about two years ago, so it took this long to get diagnosed. And of all doctors, my Neurologist is the one who recommended I see a Rheumatologist! I started seeing him because my migraines suddenly got very bad. When I filled out the new patient paperwork, dry eyes and dry mouth were on it and I checked both. Just seeing that alone, he asked me if I've heard of Sjogren's! He doesn't know much about it, but recommended I see a Rheumatologist to get tested. So I'd suggest going to one whether a doctor suggests it or not. You shouldn't have to suffer. And whether you have it or not, I suggest trying Restasis prescription eye drops. They help with inflammation and redness. I've had improvement with them, but not enough, so I recently got my lower tear ducts plugged. It's a weird thing, but I was desperate and they help a LOT!

As far as your Ophthalmologist bills, see if your medical insurance can cover them. Dry eyes are a medical issue. I've used medical insurance for my appointments. It wouldn't hurt to call and ask and have the bills submitted. Hang in there! Good luck!

 
Old 09-10-2010, 03:56 PM   #4
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Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

I was diagnosed with Sjrogren's around 9 months ago. I have had the symptoms on and off since my mid teens [over 20 years ago]. They are still mild, but slowly getting worse as I get older and life becomes more involved!

Being a man I am in a minority with regards to suffering from Sjrogren's. I find it hard to get reliable information about symptoms and avenues for some kind of relief from them.

I would recommend this book to anyone who has been diagnosed...

Sjogrens Syndrome Survival Guide
Teri P., Ph.D. Rumpf (Author), Katherine Morland Hammitt (Author)

here are some tips with regards to a dry mouth and eyes. For the mouth, make sure you stay hydrated by drinking lots of water. Try to give up caffeine if you are partial to a cup of tea or coffee more than once a day. I also stopped using mouthwash and now only use a natural herbal toothpaste. Since then my mouth is much better.

For the eyes, only use saline which is pure and for medical use. Don't buy the stuff with preservatives in it...its not good for prolonged use. I have been using medical saline for months on my eyes and it helps at the end of a long day and when I wake up in the mornings. And speaking of long days, make sure you get lots of rest.

As for physical exercise, well do what you can. I only have to run down the street for a few minutes and I will have joint pain for weeks after. So take it easy.

As for Doctors...don't take 'no' for an answer. I have seen countless doctors who have all laughed at me or given me eye drops and sent me packing. One doctor even laughed and told me to stop drinking orange juice as he suggested I may be allergic to it. Yes, orange juice and rhubarb do cause me joint pain if I eat regularly...but further investigation would have had me diagnosed years over 10 years ago. I have a transcript of all my appointments at the doctors, crazy how nobody picked up on the various symptoms cropping up over the years. I asked to see a specialist and had the blood work done and voila!


Hope that helps, good luck.

Last edited by AlienSpecies; 09-10-2010 at 04:06 PM. Reason: Update

 
Old 09-30-2010, 10:38 AM   #5
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Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

Hey-
I have recently been battling the same dry eye/dry mouth conditions along with a plethora of other symptoms. Recently, after being out of work for 2 months due to compromised vision due to dry eyes, a cornea specialist diagnosed me with Sjogrens Syndrome. Are you experiencing any other symptoms? Have you had a second opinion? It took months, and 2 internists, 1 diagnostician, and 4 eye doctors before the syndrom was mentioned to me. Now that it has been I fit the profile to a T. It is extremely frustrating I know. I am now in the process of validating the diagnosis via blood work, which seemingly can take years. I will still be out of work and on disability leave for a while longer. Hang it there, it can be tough and maybe you should get a second opinion. Let me know if you would like to chat further.
Regards

 
Old 09-30-2010, 06:40 PM   #6
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Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

Blood work should provide a good starting point for a proper diagnosis.

Last edited by AlienSpecies; 09-30-2010 at 06:42 PM.

 
Old 10-06-2010, 09:37 AM   #7
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MarisainCA HB User
Re: Dry Eyes/Lips - Possible Sjogrens? looking for support

Thank you all for your responses. I have tried Restasis in the past but my eyes were extremely irritated by them and couldnt bare the stinging sensation they caused. Ive had two pteryguim removals, one on each eye, over the last 5 years. Ive had dry eyes since the begining of my twenties. (Im turning 29 next week.) Ive tried everything, plugs- either fell out or were even more irritating, i drink 3 liters of water a day, exercise three times a week, ive also stopped taking birth control. Unfortunately im between jobs and unable to afford seeing a Rheumatologist even though i have medical insurance. other than normal saline, what preservative-free eye drops work for you? Im using Thera-tears. Thank you! I have hope!!!!

 
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