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,

I was diagnosed with the dry eyes nearly a year ago, and it can go along with a

really dry mouth. I didn't connect the two symptoms for a few weeks until I

heard about Sjogren's (Marta, that's the antibody they are checkin on you :)) )

My symptom's became quite severe, and I was unable to even look at lights or the

pc. They did check my antibody levels, of course negative. This was all before I

found out what I had all along (12 years undiagnosed) was Lyme and Ehrlichiosis.

I am still awaiting the babiosis results. I have never had rocephin. Sjogren's

is one of those diseases in amongst the rheumatoid arthritis/autoimmune group.

So I am sure Lyme can cause these symptoms as well....

Donna

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Hi Ken,

Yes I have had dry eyes off and on for the entire five years I have had Lyme.

I too take anti inflammitory drops, etc, sometimes I just use over the counter

artificial tears and they work. I can't ever judge when it is going to bother

me or for how long. Good luck and God Bless

Connie

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  • 1 year later...
Guest guest

Hi Judy. When I was first diagnosed 3 and a half years ago one of my worst

symptoms was dry and sore eyes. It was quite bad for about a year. They

were so dry and sore I was scared i would go blind or that there would be

some damage. I'd wake up at night and literally could not open my eyes

because they were " stuck " from being so dry. It was very scary. The thing

which eliminated the symptom (well, about 90%) along with much of my body

pain was guaifensin. I had a huge calcium phosphate deposit around the base

of my skull/upper neck area which I could actually feel and once the guai got

rid of this in 3 months my eye problems got much better. Another thing I

would recomend but you have to give a couple months to see if it will work is

malic acid/magnesium malate. (gaui=600mg twice per day; malic/magnesium=

400mg/75mg 3 times per day).

As for treating the eye dryness while you have it; there were 2 things

which I did to maximize the liquidity of my eyes. First, I would soak a

clean rag with hot water and press it against my closed eyes for 10 mintutes;

twice a day. Second, I used the eye drops for extra moisture very often; I

would take it wherever I went and on dry days i would use it every 30 minutes

or so. it is important to find a good product; try different ones to see

which one works best; I felt there was a big difference between each product.

Best wishes. -

>>Message: 7

Date: Fri, 26 May 2000 15:03:25 +0200

From: " judy " <baumelj@...>

Subject: Re: question to all

>>>I have a question for everyone. Ever since my CFS has begun, about 9

months ago, I have suffered from very dry eyes and now also from a dry mouth.

My eye doctor tested me and told me that I do have extremely dry eyes, as for

the mouth, it was on and off and now, while I am taking medication to

dissolve gallstones, it has gotten much worse, my lips feel extremely dry

both inside and outside, sticking to my teeth, and the sides and tip of my

tongue feel irritated and uncomfortable, although my mouth is full of saliva,

a bit thicker than usual, but I had that problem when I was pregnant 16 and

14 years ago as well, profuse thick saliva, which was hormonal and went away

right after giving birth.

In any event my doctor mentioned something called sjogren's syndrome which I

gather is an autoimmune disease that can be progressive and gives you a

greater chance of lymphomas in many cases. I had the two blood tests for it

SSa and SSb and they both came back negative but as my doctor said that I do

have a slightly higher protein in my blood I should take another test as I

might still have it in some form.

Have any of you suffered with these symptoms? I mean really dry eyes needing

drops every half hour to an hour...feeling gritty when you get up in the

middle of the night to the bathroom, or the dry in and outside lips (vaseline

is helping). Do any of you have or know about sjogrens related or unrelated

to CFS? My doctor said that it would also explain the lowgrade fever,

occasional joint pains and extreme fatigue, although as we all know these are

also signs of CFS. In any event, any information, including remedies, natural

and other, would be welcome.

Thanks

Judy Baumel

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Guest guest

Dear ,

Thanks for the info. I will check it out. Did you also have dry mouth?

That's what I am suffering from.Did anyone suggest sjogrens with you?

Judy

Re: question to all

>

> >>>I have a question for everyone. Ever since my CFS has begun, about 9

> months ago, I have suffered from very dry eyes and now also from a dry

mouth.

> My eye doctor tested me and told me that I do have extremely dry eyes, as

for

> the mouth, it was on and off and now, while I am taking medication to

> dissolve gallstones, it has gotten much worse, my lips feel extremely dry

> both inside and outside, sticking to my teeth, and the sides and tip of my

> tongue feel irritated and uncomfortable, although my mouth is full of

saliva,

> a bit thicker than usual, but I had that problem when I was pregnant 16

and

> 14 years ago as well, profuse thick saliva, which was hormonal and went

away

> right after giving birth.

>

> In any event my doctor mentioned something called sjogren's syndrome which

I

> gather is an autoimmune disease that can be progressive and gives you a

> greater chance of lymphomas in many cases. I had the two blood tests for

it

> SSa and SSb and they both came back negative but as my doctor said that I

do

> have a slightly higher protein in my blood I should take another test as I

> might still have it in some form.

>

> Have any of you suffered with these symptoms? I mean really dry eyes

needing

> drops every half hour to an hour...feeling gritty when you get up in the

> middle of the night to the bathroom, or the dry in and outside lips

(vaseline

> is helping). Do any of you have or know about sjogrens related or

unrelated

> to CFS? My doctor said that it would also explain the lowgrade fever,

> occasional joint pains and extreme fatigue, although as we all know these

are

> also signs of CFS. In any event, any information, including remedies,

natural

> and other, would be welcome.

> Thanks

> Judy Baumel

>

>

> ------------------------------------------------------------------------

> Missing old school friends? Find them here:

> 1/4055/4/_/531724/_/959538504/

> ------------------------------------------------------------------------

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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Guest guest

I did not have dry mouth as best I can remember; and no one suggested

sjogrens syndrome.

>>>Dear ,

Thanks for the info. I will check it out. Did you also have dry mouth?

That's what I am suffering from.Did anyone suggest sjogrens with you?

Judy

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  • 2 months later...

Diane,

My specialist has tested me for Sjogren's, which I don't have, I just have

permanent dry eyes which is quite common, apparently in auto immune

illnesses.

I haven't been on the site for over a week because they were quite bad,

fortunately I have woken up this morning and they feel fine....I guess it is

just one more thiing to live with!!!

Apparently if I keep them moist day and night I won't have any long term

problems....I hope.

Kate

[ ] Dry Eyes

> Kate,

> Sounds like you might have Sjogren's Syndrome. Do you have any other

> symptons - like dry mouth, skin, etc.???

>

> Can someone else give a good description of this stuff?

>

> Diane

> Toasty in Texas

>

> Moderator note: Sure, here's some information from ArthritisInsight.com:

>

> " What is Sjpgren's Syndrome?

>

> Pronounced SHOW-gren, Sjogren's Syndrome was first described in the early

20th century by Swedish physician Henrik Sj? ögren. It is divided into two

classifications:

>

> Primary Sjogren's syndrome occurs without presence of other autoimmune or

connective tissue disease.

>

> Secondary Sjogren's syndrome occurs with rheumatic diseases such as

rheumatoid arthritis, systemic lupus erythematosus ( " lupus " ), polymyositis,

and some forms of scleroderma. Approximately 50% of people with Sjogren's

syndrome are described as having secondary Sjogren's syndrome.

>

> What causes it?

> Another immune system malfunction, Sjogren's is the attack on moisture

producing glands by the body's own immune system, eventually destroying

these glands. Sjogren's syndrome can also cause problems in other parts of

the body, including the joints, lungs, muscles, kidneys, nerves, thyroid

gland, liver, pancreas, stomach, and brain. What causes this malfunction is

not yet known, however genetic, immunologic, hormonal, infectious factors

are all suspected to be involved.

>

> What are the symptoms?

> The two most common symptoms are dry eyes and dry mouth. Dry nose, throat,

and lungs, vaginal dryness, swollen salivary glands, and fatigue are also

common. More severe cases can affect other parts of the body, such as blood

vessels, the nervous system, muscles, skin, and other organs. This can lead

to muscle weakness, confusion and memory problems, dry skin, and feelings of

numbness and tingling.

>

> How is it diagnosed?

>

> Sjogren's can be difficult to diagnose. Many of the symptoms are also

present in other, more common conditions. A doctor may rely on physical

exam, medical history, blood tests and other tests to determine the

diagnosis. A lip biopsy involves the removal of a few salivary glands from

inside lip. The tissue is examined under a microscope to look for specific

signs of sjogren's syndrome. Another test that may be done is called a

shrimer's test. It involves placing a small piece of filter paper under the

lower eyelid to measure the amount of tears produced.

>

> How is it treated?

>

> The main goal of treatment is to relieve discomfort and lessen the effects

of the dryness. Since Sjogren's syndrome affects everyone differently,

treatment plans will vary.

>

> Medications:

> NSAIDS (Nonsteroidal anti-inflammatory drugs) may be used to treat

Sjogren's syndrome. Available over the counter or by prescription, they

fight inflammation or swelling and relieve pain.

>

> DMARDS (disease modifying anti-rheumatic drugs) are also known as SAARDS

(slow acting anti rheumatic drugs. They may be used to treat severe cases of

Sjogren's syndrome. As their name might suggest these medications take some

time to be effective, up to several months.

>

> Salagen? ® is a prescription drug that can increase the flow of saliva.

>

> Personal Care:

> Mouth care is essential when dealing with the dry mouth symptoms of

Sjogren's syndrome. Sipping fluids throughout the day, using sugar-free gum

or candies to stimulate saliva production work well to ease dry mouth. There

are saliva substitutes or mouth coating products available without a

prescription. Cavities are common in those with Sjogren's syndrome. Regular

dental checkups and meticulous oral hygiene are extremely important.

>

> Eyes are another area requiring special attention. Artificial tears or eye

drops may help relieve the discomfort of dry eyes. Try lubricating ointments

or small, long-acting pellets for overnight or long-lasting relief. Surgical

insertion of silicon plugs into the tear ducts can help keep the eyes moist.

>

> Treatments for vaginal dryness, dry skin and other symptoms of Sjogren's

Syndrome may be used as needed. Many can be purchased over the counter. "

>

> Hope this helps. Patty PHDRWD@...

>

>

>

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> We are currently discussing new chat times. moderates a

chat on arthritis at

> www.about.com on Thursday evenings, so check that

> out in the meantime! E mail at RA@... for details.

>

>

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Kate, I recently went to see a GP regarding my dry itchy, painful eyes. He changed my allergy medication to Allegra-D and prescribed, an eye drop called Patanol. It's made a major difference in my life. I read up on it, the article I read said that it is so safe that when it goes off patent, it will be sold over the counter. It might be worth looking in to. Becky

Re: [ ] Dry Eyes

Diane,My specialist has tested me for Sjogren's, which I don't have, I just havepermanent dry eyes which is quite common, apparently in auto immuneillnesses.I haven't been on the site for over a week because they were quite bad,fortunately I have woken up this morning and they feel fine....I guess it isjust one more thiing to live with!!!Apparently if I keep them moist day and night I won't have any long termproblems....I hope.

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  • 2 months later...
  • 4 weeks later...

I guess so, if we are talking about Immunocal. Honestly, this is the

only thing that has stopped the terrible dryness in my eyes and mouth.

People are different, I guess.

-Greg

At 03:19 PM 11/20/2000 -0500, you wrote:

>OK, the one thing that really makes my mouth dry ( and eyes to a lesser

>extent) is the same...? whew.

> >

> > The one thing that helped me with dry eyes (and dry mouth) was Immunocal

> > whey protein.

> >

> > -Greg

>

>

>

>

>

>This list is intended for patients to share personal experiences with each

>other, not to give medical advice. If you are interested in any treatment

>discussed here, please consult your doctor.

Bravo

Harvard University

Biochemical Sciences Tutorial Office and Library

Fairchild 193

7 Divinity Avenue

Cambridge, MA 02138

gbravo@...

(617)496-5129, (617)495-4106

FAX: (617)496-6148

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OK, the one thing that really makes my mouth dry ( and eyes to a lesser

extent) is the same...? whew.

>

> The one thing that helped me with dry eyes (and dry mouth) was Immunocal

> whey protein.

>

> -Greg

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Greg, That's all I was pointing out - how we are all different. I continue

with ICal and IPro.

> I guess so, if we are talking about Immunocal. Honestly, this is the

> only thing that has stopped the terrible dryness in my eyes and mouth.

>

> People are different, I guess.> -Greg

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  • 3 weeks later...

In a message dated 12/11/00 5:54:48 AM Pacific Standard Time,

gehud119@... writes:

<< The eyes water because they need moisture. Mine water all day. Use

artificial

tears several times a day. It does help.

Ginger-gehud119@... >>

that makes sense, now that I think of it. I'd read that dry eyes were a

symptom, but it hadn't occurred to me that runny, matted eyes could be a

result of dry eyes. Thanks. I'll try it.

Harper

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  • 1 month later...

Hi Patty,

I've also had a horrid time with dry eyes over the last year. My specialist

recently put plugs in my lower tear ducks and my eyes have been so my better

since. I still need to lubricate them but not nearly as much....almost not

at all. It's fantastic.

Kate

[ ] Dry Eyes

> Thought I would share a post I made to one of the forums regarding Dry

> Eyes:

>

> I've had problems with dry eyes long before I knew anything about my

> arthritis (PA) and fibromyalgia. I had to stop wearing the hard

> contact lense many years ago because the dryness made my eyes so sore.

> The eye dr then told me that the lid was sticking to the eye and

> ripping the top layer off the cornea. Ouch!

>

> This past weekend, I had my eyes examined and this dr was able to

> explain several thing to me.

>

> For the dry eyes, he recommended Naphcon A or Vasocon A for daytime

> use and Refresh P.M. by Allergan at bedtime. I've tried the Refresh

> P.M. at night and am very pleased with it. It's a combination of white

> petrolatum, mineral oil, lanolin alcohols, purified water and sodium

> chloride. He advised me to stay away from any eye drops with

> preservatives in them.

>

> There was something else that I learned from this doctor: the muscle

> spasms with the fibro in my neck can and has changed the shape of my

> right eye. Makes sense, since it's all connective tissue, muscles,

> tendons, etc. that are effected and that's what moves the eye. I've

> been asking different doctors for years why my right eye was sore on

> the top of the eyeball -- now I know. Sure is nice to find someone who

> knows a thing or two.

>

> More info at:

> <http://www.allergan.com/consumer/index.htm>

> on Refresh, Solutions for Dry Eyes

>

> <http://onhealth.webmd.com/conditions/resource/pharmacy/multum/item%2C

> 72254.asp>

> OnHealth: Naphcon

>

>

> <http://onhealth.webmd.com/conditions/resource/pharmacy/multum/item%2C

> 75360.asp>

> OnHealth: Vasocon

>

> Hope this helps.

> Patty B in the Pineywoods of East Texas

>

>

>

>

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Hi, I also have dry eyes and I was wondering if you were ever able to go

back to wearing contacts. I have had iritis about 4 times a year for the

last 2 years.

Thankyou Tawna

Jamison

[ ] Dry Eyes

>

>

> > Thought I would share a post I made to one of the forums regarding Dry

> > Eyes:

> >

> > I've had problems with dry eyes long before I knew anything about my

> > arthritis (PA) and fibromyalgia. I had to stop wearing the hard

> > contact lense many years ago because the dryness made my eyes so sore.

> > The eye dr then told me that the lid was sticking to the eye and

> > ripping the top layer off the cornea. Ouch!

> >

> > This past weekend, I had my eyes examined and this dr was able to

> > explain several thing to me.

> >

> > For the dry eyes, he recommended Naphcon A or Vasocon A for daytime

> > use and Refresh P.M. by Allergan at bedtime. I've tried the Refresh

> > P.M. at night and am very pleased with it. It's a combination of white

> > petrolatum, mineral oil, lanolin alcohols, purified water and sodium

> > chloride. He advised me to stay away from any eye drops with

> > preservatives in them.

> >

> > There was something else that I learned from this doctor: the muscle

> > spasms with the fibro in my neck can and has changed the shape of my

> > right eye. Makes sense, since it's all connective tissue, muscles,

> > tendons, etc. that are effected and that's what moves the eye. I've

> > been asking different doctors for years why my right eye was sore on

> > the top of the eyeball -- now I know. Sure is nice to find someone who

> > knows a thing or two.

> >

> > More info at:

> > <http://www.allergan.com/consumer/index.htm>

> > on Refresh, Solutions for Dry Eyes

> >

> > <http://onhealth.webmd.com/conditions/resource/pharmacy/multum/item%2C

> > 72254.asp>

> > OnHealth: Naphcon

> >

> >

> > <http://onhealth.webmd.com/conditions/resource/pharmacy/multum/item%2C

> > 75360.asp>

> > OnHealth: Vasocon

> >

> > Hope this helps.

> > Patty B in the Pineywoods of East Texas

> >

> >

> >

> >

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Hi Kate,

Have you had someone on this list write to suggest that you go on

" raw diet " because it works for dog? Sounds interesting but not

something I'm ready nor able to do -- it's difficult enough to chew

the cooked foods.

> I've also had a horrid time with dry eyes over the last year. My

>specialist recently put plugs in my lower tear ducks and my eyes have

>been so my better since. I still need to lubricate them but not

>nearly as much....almost not at all. It's fantastic.

Glad you found a remedy for yours. Mine isn't quite that severe for

which I'm grateful.

Patty B in a windy but sunny Pineywoods of East Texas

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Hi Tawna, I've gradually had to wear my glasses more and more recently so

have never had to bother with contacts. Though to be honest with you I had

such problems with my eyes that I just wouldn't want to chance it.

Kate

Re: [ ] Dry Eyes

> Hi, I also have dry eyes and I was wondering if you were ever able to go

> back to wearing contacts. I have had iritis about 4 times a year for the

> last 2 years.

> Thankyou Tawna

> Jamison

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  • 4 months later...
Guest guest

>>What helps with dry eyes? I have this problem.

L>>

That is one scary symptom. I had really dry/sore eyes for close to a year.

For me guaifenesin made them much better. After I stopped that magnesium

malate/malic acid pills have kept them in good shape ever since.

Before the guai I used to use " refresh plus " drops a lot; and would soak a

clean rag in hot water and press it to my closed eyes for 10 minutes per day;

this opens up pores and should help a bit. Also before the guai I got slight

relief with trycyclic antidepressents; but these had side effects and after a

while they would stop helping.

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  • 5 months later...

Hi All -

someone wrote recently about dry eyes and having

trouble fixing them. Just wanted to point out that

this is a lupus symptom (Sjogren's syndrome) and you

should probably be tested to rule this out if you're

experiencing chronic dry eyes.

Good luck - Jennie F.

__________________________________________________

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  • 4 months later...
Guest guest

Sjogrens..never heard of this.

From: dbornscheu@...

Reply-

Subject: Re: dry eyes

Date: Fri, 29 Mar 2002 11:17:40 EST

Dry eyes are a symptom of Sjogrens, aren't they? Just a thought.

Diane (, 2, pauci)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

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  • 2 months later...
Guest guest

Gail...

I agree with you whole heartedly about the Celluvisc...it has helped me

enormously. Since you are finding flaxseed oil so unpalatable, I thought I would

offer a suggestion. This is a blend I got from Dr. Cabot's book, The

Liver Cleansing Diet. I use it on almost everything I eat (oatmeal, salads,

brown rice, etc.) which gives me a good supply of flaxseed oil without slurpping

the stuff. It has a slightly sweet and nutty taste. It's got portein, essential

fatty acids, minerals and fiber...and according to her book, is " definitely an

anti-aging mixture " (that's for your vision <g> but I haven't noticed my age

related vision problems improving).

LSA (Linseeds which are flaxseeds, sunflower seeds and almonds)

1-1/2 cups flaxseeds

1 cup sunflower seeds (raw and unsalted)

1 cup almonds

Mix and grind together until fine (I use a coffee grinder and it does a great

job). Store in dark glass jar in the fridge. It's important to keep it sealed

and chilled so you don't lose the oils.

Just thought I'd pass that along....

Tatezi

Dry eyes

Just a note that might help others with the same problem. I developed

severe dry eye problems when on my last go-round of rx. The problem did not

go away when I went off rx, although it did let up somewhat. I have had

several breakthroughs with dealing with this and figured I would share with

you guys. First was switching from the night use of ointment to Celluvisc.

Conversely, it has been found that continuous use of the ointment causes

irritation to the eyes! I guess it wasn't really formulated for those of us

who had real problems. Anyway, the Celluvisc was the first great

improvement. The second was the discovery that eating a couple of handfulls

of cashews each day helped too. Thirdly, I made a concerted effort to

drink two extra glasses of water each day (besides my usual daily

beverages.) Lastly, i have started taking (ugh!) flax seed oil-about 1/4tsp

twice daily. My eyes are pretty much OK now! I still use Celluvisc at

night, and regular drops immediately upon awakening, but I don't really need

the drops during the day like I used to. Now, if I could just get rid of

this presmyopia (age-related far-sightedness.)

gail

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Guest guest

Thanks Tatezi. I'll keep it in mind when I use up the oil.

gail

From: " Tatezi " <tatezi@...>

Reply-Hepatitis C

Date: Tue, 18 Jun 2002 21:18:50 -0500

<Hepatitis C >

Subject: Re: Dry eyes

Gail...

I agree with you whole heartedly about the Celluvisc...it has helped me

enormously. Since you are finding flaxseed oil so unpalatable, I thought I

would offer a suggestion. This is a blend I got from Dr. Cabot's

book, The Liver Cleansing Diet. I use it on almost everything I eat

(oatmeal, salads, brown rice, etc.) which gives me a good supply of flaxseed

oil without slurpping the stuff. It has a slightly sweet and nutty taste.

It's got portein, essential fatty acids, minerals and fiber...and according

to her book, is " definitely an anti-aging mixture " (that's for your vision

<g> but I haven't noticed my age related vision problems improving).

LSA (Linseeds which are flaxseeds, sunflower seeds and almonds)

1-1/2 cups flaxseeds

1 cup sunflower seeds (raw and unsalted)

1 cup almonds

Mix and grind together until fine (I use a coffee grinder and it does a

great job). Store in dark glass jar in the fridge. It's important to keep it

sealed and chilled so you don't lose the oils.

Just thought I'd pass that along....

Tatezi

Dry eyes

Just a note that might help others with the same problem. I developed

severe dry eye problems when on my last go-round of rx. The problem did

not

go away when I went off rx, although it did let up somewhat. I have had

several breakthroughs with dealing with this and figured I would share with

you guys. First was switching from the night use of ointment to Celluvisc.

Conversely, it has been found that continuous use of the ointment causes

irritation to the eyes! I guess it wasn't really formulated for those of

us

who had real problems. Anyway, the Celluvisc was the first great

improvement. The second was the discovery that eating a couple of

handfulls

of cashews each day helped too. Thirdly, I made a concerted effort to

drink two extra glasses of water each day (besides my usual daily

beverages.) Lastly, i have started taking (ugh!) flax seed oil-about

1/4tsp

twice daily. My eyes are pretty much OK now! I still use Celluvisc at

night, and regular drops immediately upon awakening, but I don't really

need

the drops during the day like I used to. Now, if I could just get rid of

this presmyopia (age-related far-sightedness.)

gail

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