Sjogrens World Forums

Hi all,

Docs tell me that this is Sjogren's.

My eyes are so dry that I'm in pain every single day, terrible pain, and have been since early September. I'm using preservative-free eye drops, two drops per eyes, about 80+ times a day, and I stay in bed most of the day with my face 8 inches from the humidifier. I am completely disabled by this thing, and can rarely leave the house.

In addition, my mouth and throat also hurt everyday, and I have extremely dry skin.

My ENT sent me to a Rheumatologist who prescribed the saliva pills. I take them 3 times a day and they have helped, but now it's heater weather and my pain has gotten extremely bad in the last two weeks.

Only 4 or 5 months ago, I could go into any store I wanted to, could drive my car without care, could stay out of bed for long periods of time. I find that doctors aren't much help.

My opthamologist is a #$***rd and said we could think about the tear duct surgery in a few months. This was 2 months ago. My piece of paper in the eyes test was a 7 in one eye and a 3 in the other, and that's when the pain was twice as good as it is now. Plus, the numbing drops make my eyes really wet, so for a true reading, split those numbers in half, at least. I think that qualifies for the tear duct procedure.

Also, he prescribed me analgesic drops, two different ones, that have never once helped the pain. The 2nd set, actually felt like a chemical burn in my eyes.

I have learned that Advil, Tylenol, and definitely stronger pain pills dry me out so much that they cause more pain than they cure. Also, the extreme pain I'm in now began when I had to take antibiotics for a nose infection also caused by the dryness. I've been off the antibiotic for 3 weeks and the pain hasn't subsided.

Is anybody out there? Is anybody suffering like this too?

I had a hysterectomy this summer and think this is hormonal based. Has anybody else gotten Sjogren's after losing their ovaries??

Barbara

Your eye pain must be triggered by something else in addition to the dryness issue. I had the Schirmer's test and got a 0 and 1 and I have no eye pain - that is what is making me wonder about you.  Also most of us, unknowingly had Sjogrens for years but it just took awhile for it to get bad enough to either bother us or bother our dr.

How are your sinuses?  When my sinuses are more drier it bothers me more and of course the heat on in the house doesn't help.  I do sinus rinses with NettiPot (sea salt and distilled) water and it does help. I notice if I don't do that regularly I get sore throats and sooner or later a sinus infection.

I go to a teaching/research hospital here. I got the royal runaround for 6 yrs from other so called "specialists" before I was diagnosed with Sjogrens. I'd recommend one of those to get to the bottom of your problems as it sounds like you are getting "the brush off". We have to learn to be an advocate for ourselves and demand help from the drs or go to another one. Usually it is go to another one.  :(  You should not have to go so long in pain without a dr helping you. Good Luck finding a dr who will WORK to help you.

Welcome to the forum.

Have any of the docs you've seen suggested Restasis? I was in so much pain from the dry eyes that I couldn't sleep. That turned around completely with the Restasis.

Hope you can find good docs. I'm in a similar situation, trying to find a compassionate knowledgeable doc who'll take me seriously. Been having general symptoms for over 7 years myself, with definite Sjogrens developing over the past 3 years, so I've been fighting with doctors since I graduated from high school.

I know my symptoms will flare before my period and subside during it, so there could be a connection between your hysterectomy and Sjogrens. And I think Sjogrens is more common in older people. 


I've been searching doctors in my area on healthgrades.com, which has reviews on doctors. Might be a place to help to find good doctors.

Hi barwalzun  :)

Welcome to Sjogren's world. I also think you need to get the eye pain investigated further. The dryness tends to make eyes feel 'gritty' and stinging but not out and out pain. Do you have a corneal abrasion for instance? If you do Restasis could help - i believe it stings but works and it's meant to used along with artificial tears. It's not a substitute for artificial tears.

I hope you find the site useful. If your eyes are the worst problem you may also find advice at a site called dryeyezone.com

Take care - Scottie  :)

Welcome from me too. :)

I think SJS can be exacerbated by lack of oestrogen. Although I've had the symptoms of SJS for many years, my symptoms became intolerable after my total hysterectomy 6 years ago. I'm one of the lucky ones who can take hrt, and that definitely helps my joint pains.

Stick with this site and you will get lots of advice and support, and make new friends.

Kathyx

Welcome barwalzun.  I have found several helpful older threads while searching through here.  When and if you feel like it, do some word searches and see if something comes up that might help you.

Welcome Barwalzun!  I hate to have to meet you this way, but I'm sure glad that you've found us!

I'm with the others, your eyes are dry for sure, but not as bad as other members here so it makes me wonder if you could get a second opinion from another opthamologist maybe? 

You didn't mention, but are you on Restasis by chance?

Hang in there and take care of yourself -


Patze

Welcome to the forum, Barwalzun!  ;)

I'm glad you found us, too, and think you'll find lots of great info. and some friendly, helpful people here.  You've come to the right place!

I'm also wondering if an appt. with another opthamologist might be a good idea.  As Scottie says, dry eyes will feel gritty or scratchy, but outright pain might be something else needed to be investigated.

Take care and keep us posted, please.
Melinda

I had a complete hysterectomy years ago, then was diagnosed with Sjogren's Syndrome. I know men have it too but i wonder too that it ca be linked to hormones.

Derry, there is a link to low testosterone. There is also a difference in frequency between male and female testosterone of one cycle.When I play the tones for parotid infection (Mumps) I add the tone for testosterone and my saliva is increased for a short time.

Quote from: barwalzun on December 10, 2011, 06:22:39 PM
My eyes are so dry that I'm in pain every single day, terrible pain, and have been since early September. I'm using preservative-free eye drops, two drops per eyes, about 80+ times a day, and I stay in bed most of the day with my face 8 inches from the humidifier. I am completely disabled by this thing, and can rarely leave the house.

Barbara

I also have pain in my eyes, from dry eye and associated difficulties, that seems to come from deep in the eye ball -- what it feels like, not what it is.

Has your ophthalmologist mentioned blepharitis and meibomionitis or corneal opacity /corneal abrasions, either as diagnoses or as things s/he has ruled out?

Here is some information related to loss of estrogen, from the dryeyepain site:

Quote
Estrogen deficiency (usually due to menopause or hysterectomy) can cause dry eye or worsen existing dry eye. Taking a hormone replacement therapy (HRT) drug such as Prempro, can increase dry eye pain even more — the Journal of the American Medical Association (JAMA, 2001; 286:2114-2119) reports substantial worsening of dry eye symptoms in people using HRT. In addition, insufficient production of the "male" hormone androgen (which, like estrogen, occurs in both men and women) is reported to impair the function of both the lacrimal and meibomian glands (article by Dr. Stuart S. Kassan in Sjogren's Syndrome Foundation newsletter, February 2002).

To me this suggests getting a joint consult between ophthalmologist and gynecologist.

---
I know that there is eye pain from dry eye that is NOT grittiness, painful dryness,  but feels like it's deep in the eye ball. And you don't know how to make it stop.

What relieved the dry eye pain from corneal opacity the most for me was an eye patch over the affected eye with heavy-duty doctor-recommended eye ointment. Because you have both eyes affected, I will suggest patching eyes alternately. 

To test whether this method would relieve your pain, you would start small, with an off the shelf sterile eye pad with the pharmacy chain label on it. Then get GenTeal Night-Time Lubricant "Night time PM Dry Eye Relief." It is an 85% white petrolatum, 15% mineral oil, gooey, but it works. If it works, ask the pharmacist to order a box of 50 Kendall Curity Eye Pads, for around $11.00.

Now you are armed with a small tube of GenTeal PM ointment, and a sterile eyepad. You also need one of those round tin rolls of 1/2" FirstAid tape and a hand held mirror of high magnification.

INSTRUCTIONS
You will be working with one eye at a time. I'd suggest a 4 or 6 hour shift for alternating one eye with the other.

Set Things Up
Pick the eye that hurts more. Wash your hands. Open the tiny tube of ointment. Set it down on a dry counter. Take an eye pad envelope and find the pull spot; open it but keep your fingers on the outer wrapping, keeping the pad itself connected to the sterile wrap until you need it. Take the FirstAid tape donut, and measure a length of tape (to start with) that is the same length as the opened wrap for the eye pad (both halves).

Technique
Now, using the mirror, look at the eye you will be working with. You will be avoiding the cornea, which is the colored portion of the eye -- makes it easier. For the first day's applications, just apply the ointment to the outer white of the eye on which you are working. Look toward your nose, so that the colored part of the eye is away from the outer edge. Then pull down on that outer edge. Now you have a large area to work with. I usually start from inside that outer edge, and lay down about 1/2 inch from bottom to top upwards across the eyeball.

Close your eye and move the ointment around a little bit.

Then pick up the eye pad and carefully rest it on your eye, lightly. The eye ointment will hold it there -- sort of. Don't make any sudden movements with your head or you are likely to dislodge the eye pad. Now pick up that piece of tape that you cut off the roll. Bring it near your face. Turn your face up, so that the eye pad is in the eye socket, and put the tape diagonally across the eye pad from the outer edge to the inner edge of your eye brow (approximately). The tape should extend from near your earlobe on the outer edge of the eye, to the middle of your eyebrow or close to your hairline on the opposite side of your face.

This is not an instantaneous miracle of healing, but your eye will gradually feel soothed, more than with drops. After four or six hours, take this patch /pad combination off, and do it again with the other eye.

The eye pain for me did resolve, the worst of it, in about a week, gradually lessening.


The other thing you can do, even at the same time, is to use the eye ointment on both eyes at night.

Glad to have you on board, Barbara
Soycoffee

hello everyone,
im fairly new to chat rooms, so forgive me if i fumble!  i am 35 yr old mother of 4 children (16,7,4 & 3) i was diagnosed when i was expecting my 7 yr old.  swollen parotid glands was the 1st sign.  no dry eyes but periodic hoarseness, extremely dry skin though! OA now RA in right hand joints left hip, neck, lower back and knees. had frozen shoulder about a year ago but i think my new job worked out the stiffness. constant popping and cracking of bones and joints. hands ache and can crack my neck and hands every minute of the hour! first two toes on right foot are numb. daily migraines that subsided but have recently returned. was on plaquenil about a year ago but stopped because it seemed to make my joints weaker and sensitive to touch, i could barely lift the covers off without extreme fatigue and pain.  episode of fatigue throughout the day (8-9 hour very physical work day) neck bones sit on directly on top of each other instead of natural curve and tailbone sticks straight out like a L! never been in a car accident! prayer is what keeps me going! i always get "wow, but u dont look sick!" so tired of that comment! but i am sick and tired of being sick and tired!

thanks

whitwallsmith welcome to the forum. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf May be an interesting link for you. There are a number of alternative treatments that you can try. I use a few that work for me.

 joe s.
thanks alot...i now have a new tool to cope and to explain the way i feel everyday to everyday people! thank you!
i try not to look sick cause i secretly wish i wasnt...i know everything happens for a reason and never do want to question GOD, but sometimes it is hard...really hard!

I'm so sorry, everybody!
After I posted this, I waited and waited and I thought NOBODY replied. The only email I got was from a moderator telling me he/she had to edit my post because I used a cussword.
I could barely look at a computer screen at all, so I certainly didn't waste any pain looking at this site again, with nobody replying, until today when I got here by accident (searching on Neurontin and Sjogren's) and saw that I was still logged on!

And people did reply!!!
So sorry!
I think I changed my settings so that I will be notified now when I get replies.
Thanks to all who answered me.
Barbara

No worries at all Barbara!  We understand the "standing alone" feeling, and when I first joined there weren't that many people on the site.  I'm so happy to see that its expanded very nicely and there are now scads of members!

Look around and if you get the info that you're searching for, don't be shy and ask away as there is usually someone about that just might be able to point you in a direction or two.

And I'm glad that you decided to give us "another" lookie see!



Patze

Hi Barbara,

Nope...no problem at all.  I'm just sorry you were under the impression no one responded to you!

I'm also glad you came back to look again.  ;)  Please feel to post anything at all and we'll be here.
And now, maybe you'll be able to see that we are! 

Take care,
Melinda

I just bookmarked the "Show new replies to your posts" page and check when I feel like it.