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Date Joined May 2005
Total Posts : 6937
   Posted 1/26/2009 12:05 PM (GMT -6)   
lisaann611 said...

Hello Everyone

I am new here I am 29, married and have a dear 7yo little boy, and also newly dx with SLE and also "had some positive antibodies to sjrogens" thats what the doc said... anyway I recently have been waking up with terrble eye pain and leads to a terrible headache in and around my eyes as well as my head. I take 2 alieve and it does not work... It is horrible I don't even want to open my eyes at all and it even makes my eyes feel funny almost like a dizzy feeling.. it's hard to explain.. I was also dx with epstein barr this summer I don't know if that has anything to do with the eye pain... and also I have been so fatigued almost like I have the flu.. but withno flu symptoms, so horrible to be feeling so weak...

Just wondering if any of you feel like this at all.. I'm scared..

meds: plaquinel 200mg coreg 20mg baby asprin 81mg

Hi Lisaann,

From my experiance with Sjogren's Syndrome, I would bet that is what is going on with you - one of the main symptoms in dry eyes, and at this time of year (at least in the northern hemisphere!) our heating systems contribute to the problem. One of the first defenses recommended by my rheumy was "eye lubricants" -- *not* products for red eye or contact users, but something that says "eye lubricant" on it.

What I use regularly are 2 over-the-counter meds - "Tears Naturale II" by Alcon for daily use, and "GenTeal Lubricant Eye Gel" for overnight use. The Gel is a bit messy to get in, but does much better for overnight use than the drops. A lot of us w/Sjogren's get by with the eye lubricants -- try it and if you still have problems talk more with your doctors.

There are other options to try later -- a prescription medication that increases eye lubrication, and also a surgical option that plugs the tear ducts. (The tear ducts don't produce the natural lubrication, they let it drain.)

Hope that helps soon!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982


Post Edited (Lynnwood) : 1/26/2009 11:08:43 AM (GMT-7)

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 330
   Posted 1/26/2009 12:26 PM (GMT -6)   
Hi Lisaann,

Welcome to the board! Lynnwood has given you great advice, she's a great source of knowledge and advice! I too have sjorgens syndrome, as she stated winter time can be the worst and forced heat does not help our condition any. As a recommendation from someone on this board I found great relief from washing my eyes with cool water when I first wake up, I had been using warm or hot water, which actually was making things worse. Also, mid-day if my eyes are bothering me I put a cool compress on them, it really soothes them.

I have used the over the counter drops Lynnwood suggested, they really are the best. Unfortunately, my sjorgens has progressed to the point were I have had to move to prescription meds as well. Try the other the counter drops and as she suggested if you get no relief talk to your doc, he/she will most likely refer you to an opthomologist.

Hope you find some relief soon!
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/26/2009 9:26 PM (GMT -6)   
Hi Lisaann, welcome! I also have sjogrens but suffer more with dry mouth than dry eyes. Lynn and Melissa have given you some great advise, I just wanted to welcome you to the board. Keep us posted on how you are doing! Take care
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/27/2009 10:10 AM (GMT -6)   
Hi and welcome. I'm sorry to hear about your diagnosis and the problems you are having. The only eye pain I have is when I get lupus headaches it sometimes feel like my eyes are going to explode. I can relate to the feelings of having a bad flu. That's exactly how I feel when I do too much and my body starts to crash. I'm a mom of a 7 year old and 11 year old, so I know how hard it is to be a mom and be sick.

I'm glad you found this forum and think you will find a lot of support here. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 1/31/2009 3:26 PM (GMT -6)   
If you are in pain I would call your doctor, he/she may want you to go see an ophthalmologist just to get it checked out. Did you have your eyes examined before starting plaquenil? If so, when was that? Lupus can make you feel very fatigued, fatigue like you've never experienced before. That is the one thing I think we all struggle with. You jave to learn to listen to your body and rest when you need to.

Feel free to ask us any other questions you may have, that is what we're here for. Take care :-)
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/1/2009 12:20 PM (GMT -6)   
HI there,
Stacie gave you some good advice. Seeing an ophthamologist would be a very good idea. They know all about Sjogrens and how to treat it, look for signs of damage, etc.
The fatigue and flu-like feelings are the classic Lupus symptoms. We have all felt that way.  How long have you been on the plaquenil?  It can take many months to "kick in" and help make you feel better. 
Take care,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

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