I work with someone who has this. Yes, she was tested, after passing out and falling down the stairs. She went numb before passing out. I believe it can be somewhat hard to diagnose. Am I remembering correctly that it is related to Lupus (or similar)? She has her regular doctor and sees a rhumatologist (apparently they deal with lupus and other similar diseases) and also because of the salt issue, a kidney specialist. She was in her 30's when diagnosed. She seems to manage well, the only thing I notice is she seems to get colds easily. She's proactive in seeing her specialists and has lost a good deal of weight - don't know if that helps in any way other than it is healthier.

tina

My spinning instructor has Sjogren's Syndrome.

Looks like there is a correlation between fibromyalgia & SS:
comprehensive article here That article is good, but the citations are a little old. Here's something more up to date: abstract

Last year in mid-winter, I had terribly dry eyes and could not salivate for about 6 weeks. Gritty burning eyes, burning throat. No amount of water seemed to hydrate me, despite drinking constantly, even throughout the night. I thought it was Sjogren's. My doctor wanted to wait for humid spring weather before making a diagnosis. My optometrist wanted me to try fish oil capsules, keeping in mind they might take a month or two to be effective. I did use the fish oil capsules, and the dryness eventually went away. Now, the dry winter weather also went away, and some other factors that may have been involved too (I had started a diet & increased my work outs -- profuse sweating). So I can't say for sure the fish oil capsules worked. The dryness may have just resolved itself. I had a little trouble this winter with dryness too, but nothing like last year. I just wanted to mention all this just so you might want to take a wait & see attitude and maybe try fish oil too.

Finally, my son is treated by a great outfit, the Boston Foundation for Sight. I think they have a branch office on the west coast? They're expanding quickly, so maybe there's an office closer to you. Their scleral lenses alleviate eye dryness from Sjogren's . My spin instructor is looking into getting some.

Here is a link that might be useful: Boston Foundation for Sight

I was digging through the BFS site and found this link. Thought you might find it useful.

Here is a link that might be useful: dry eye forum

Fly -

"He didn't do any tests, but just said I've probably got it and there's nothing to do about it except artificial tears and keep a beverage around all the time now. Great." Sojerns is so much more than dry eyes. Perhaps you need to find a doctor who has more experience with Sojerns?

tina

Look at this website:

http://www.sjogrens.org/home/about-sjogrens-syndrome/diagnosis

tina

Good morning, tina & awm--thank you so much for your replies. Tina, I had the same feeling when I heard my doc say that. If he's *not* sure that that's what explains the dry eyes and mouth (and other symptoms I haven't mentioned...), wouldn't he want to get a diagnosis as close to sure as possible?

Interesting about the overlap with fibro--I really appreciate the link, awm. The eyes bug me, but honestly it's the mouth that really is the problem. I teach and it's embarrassing to suddenly not be able to make words. Horrible. I'm embarrassed just typing it. So I keep water around, but it doesn't help for too long.

Wow, now that I'm typing this, I'm taken right back to when I first told a doctor about my suspicion that I might have endometriosis: she said "Oh NO, don't say thaaaat--that means we have to do all these tests and it's such a pain". Seriously. I told her supervising doctor (who was a friend of mine) what she said and she was read the riot act. Nevertheless, it *still* took me 7 years and finally one doctor getting into a screaming match with her supervisor (teaching hospital faculty at an Ivy League school) before anyone would agree to do a laser laparoscopy. THEN, they were amazed at what they found and couldn't get it all. Gosh, if anyone had paid attention before, maybe my situation wouldn't have been so dire and we could have had more children.

Sometimes I hate doctors.

I'm going to ask for a referral to a rheumatologist who knows Sjogrens. I've also just taken twice my normal dose of fish oil, awm -- thank you for sharing that. awm, I have to wake up to drink water too. At least I found a nice tumbler with a glass that fits over the top so my cats can't get at it while I sleep : ). Maybe if I'm lucky it will go away like yours did; although it's been a year already with worsening symptoms.

I'm calling for a referral today. You all are wonderful. WHY do doctors think that anything they don't know about is not worth knowing?

Flyleft

Now that you've increased your fish oil supplements be aware they can falsely increase your cholesterol numbers.

"One widely cited study did find that fish oil tends to raise ("bad") LDL cholesterol by five to 10 percent while raising ("good") HDL by one to three percent. "

I'm glad to hear you're going to see a specialist. What a bozo the other Dr is for not referring you to one!

Jennifer

Flyleft, I'm so sorry you have to deal with all these %$#! health issues. You need a break! (Ooops, careful what you wish for -- given your history, that sentiment could bring on fracture!)

In defense of your doctor, my GP said he couldn't make an accurate diagnosis, that a rheumatologist was needed for that.

Your doctor may have this in mind, as mentioned in the Fox, et al. article:
"Of particular importance, some patients have a poorly understood group of symptoms called fibrositis or fibromyalgia.... They very frequently have dryness of the eyes and mouth. Since minor salivary gland biopsies of these patients have the glands with an intact appearance, we deduce that the cause of dryness must involve the generation of signals for the gland at the level of the central nervous system (brain) or in the peripheral nerves that carry these signals to the glands. These symptoms may be very disabling, but it is important to distinguish them from Sjogren's syndrome (an autoimmune process that destroys the gland) since the therapeutic approach is different."

We are blessed with a wonderful internist. If he doesn't know something, he is not afraid to say so and send us to someone who will, or try in another way to find out. Good doctors are hard to find. I wish you the best of luck in finding someone who is knowledgeable in Sjogrens. Please keep us posted!

jennifer, that's really important information. Wow. Never knew that before. I wonder if other people who take fish oil are getting higher cholesterol #s and are puzzled as to why.

awm, yes, definitely -- that's why I would like some tests, which it appears there are, to rule out Sjogrens or not rule it out, or whatever is possible. But not doing anything is what got me in trouble with the last doctor, who didn't care too much about my high blood pressure, and I remember how that went. : ( I am thinking it might be time to find another doc.

tina, the supervisor of the endometriosis person was the best internist I've ever had. He just by himself was a serious factor weighing in our decision whether or not to move to Philly and later to NC. He's almost worth staying put for! Odd thing, though: I can't find him online, now -- I am hoping nothing unfortunate has happened to him.

I've got a call in to my internist to get a referral. I'll let you know how it all turns out. I'm going to keep researching the fibro connection as well. Some of those other symptoms I'm having are not ones I feel comfortable telling an older male doctor, especially after he did a pap smear yesterday that kept me bleeding until this morning. Never had that happen before. I think it's related.

Good doctors *are* difficult to find. This forum is such a blessing.

My sister has Sjogrens and the dry eyes were her signal. She uses drops four times a day, there are times when the eyes get very sore and she's been instructed to clean over them with baby shampoo diluted and wipe with cotton balls. Those two things have made a huge change in her life. She does it automatically now. Last year she had to have a cataract removed. Unlike most people it didn't heal in two weeks but three months due to the Sjogrens. But she was happy with the result. She went on to get lupus which is a mild form which only acts up about twice a year so all in all she's doing well. It doesn't hamper her life style at all. Good luck to you.

Flyleft - I am so sorry that this is happening! I had never heard of this syndrome until now. It sounds complicated and very unpleasant. I will be sending my good thoughts for you to find the right doctor, diagnosis and treatment.

Meanwhile, I can make suggestions for how to live with dry mouth. It's not fun. The main thing to be concerned about is your teeth. Lack of saliva allows the proliferation of the bacteria that rot tooth enamel. This is not something that "might" happen, it almost inevitably will happen. Talk to your dentist about this. I have had dry mouth for years and years, triggered by the meds I take; it's a common side effect of many meds. I had virtually perfect teeth until my late forties and then the boom was lowered. I have had so many cavities, crowns, and "procedures" that I'm sure my doc has vacationed very nicely courtesy of my dry-mouth wrecked teeth.

This is probably going to sound awful, but the best solution for dry mouth is to chew sugarless gum. Just about all the time. I know, I know. In public? Yes, if necessary. Dentists are late to the party in accepting chewing gum, but now they are all for it. Some will even say that after a meal it's almost as good as flossing. And chewing gum companies have discovered the large community of us "dry-mouthers" and are producing some good flavors, not just the usual mint and cinnamon. I even sleep with a small piece of gum tucked against my lower jaw. between my cheek and lower gumline. I also have a drink with me all the time. Bottled water is the best. My dentist says no sodas, no fruit drinks, not much coffee. This I ignore - will not give up Diet Pepsi and coffee.

I also use Biotene Oral Balance Liquid. You spritz a bit into your mouth and it immediately takes away the dry. But it doesn't last very long.

I know that you are a teacher. So was I. It's tricky. Send me an E if you like. We have a new computer and I lost my address book and all my emails before mid-March are inaccessible!

I looked into Sjorens when I started getting sores in my mouth last year. I also have dry eyes, skin, and was (still am) concerned that I may have Sjorens or another auto immune disease. Have been to several types of doctors and did have blood work that came back negative for Sjorens but have been told that it may take years for it to actually come back positive.

Anyway, please email me (go through my page) as I would like to chat with you. Like Sable said, Biotene is a big help and I was also told to take a good Vitamin with all the vitamin B complex. Also avoid all toothpastes except the basic Crest or Colgate. The ones with the whitening stuff are not good for those with dry mouth.

I gave up on soft drinks and really noticed that it helped plus I lost 8 lbs doing so!(I drank diet drinks, too!)

Mary (retired Kindergarten teacher!)

There is a toothpaste specifically for dry mouth, I saw the ad on t.v but I didn't get the name of it.

The toothpaste is Biotene Dry Mouth Toothpaste. My dentist gave me a sample on my last visit. It's pretty good.

I used the Biotene toothpaste but it never made my teeth feel clean. Also used Senseodyn but it was the same way.

Sable - I am also having lots of tooth decay- probably related to dry mouth. The last time I had my teeth cleaned, which I do faithfully every 6 months - the hygenist told me to use a prescription toothpaste called Clinpro. It has a higher % of fluoride and you use it once a day and leave it on the teeth for an hour then rinse. It was $24 a tube but I have barely made a dent in it and have used it since Jan.

One thing about the Biotene - it does have artifical sweetners in it and I noticed that I was getting alot of plaque behind my front teeth, more than normal. I wondered if by using the Biotene just before bedtime that maybe it was promoting more plaque buildup. So I have stopped using it at night before bed and if I need to use it, do so earlier before I brush. Seems to have helped me.

This is so helpful!! I'm going to get the toothpaste, the liquid, and call a female rheumatologist whom my internist recommended, today.

sable, you're so kind to write out those suggestions. I'm sorry you have so much knowledge on this topic to share...I'm going to make a cleaning appt. with the dentist as well and see what he has to say. LOL about the coffee :) The sodas I drink are sweetened with truvia (stevia) - I wonder if those are o.k.? I'll e-mail you--sorry about the computer problems!

yayagal, it's inspiring to hear how your sister is navigating through the multiple bothers that face her. It still strikes me that *90%* of the folks who get this are postmenopausal women, which would make sense to me, but then other people, including 20-something men, can get it too. Such a strange syndrome.

Mary/mboston, I really appreciate your sharing your experience as well. I will e-mail you too -- I'm so unbelievably grateful for all the marshaling and offering of resources here. Group hug :)

Some of those other symptoms I'm having are not ones I feel comfortable telling an older male doctor, especially after he did a pap smear yesterday that kept me bleeding until this morning. Never had that happen before. I think it's related.

I was thinking that perhaps this isn't Sjogren's, but maybe a menopause thing? I understand that overall dryness can be a problem in menopause. And my grandmother had Sjogren's. I remember that she had to do the baby shampoo wash, and tried many different artificial tears and other medications.

Yeah, like TerriK, I wondered if there were other sort of "dry" symptoms. I don't have Sjogren's, but do have, er, some of the other peri/post menopausal dryness. No use fretting over a Sjogren's "sign" that isn't really Sjogren's. The long bleeding might be related to the thinning and increasing fragility of vag. tissue that comes (naturally) with decreased estrogen levels?

L

Fly - I don't know about truvia. The problems caused by dry-mouth are not because of sugar or a sugar replacement. They are caused by the acid in these drinks, which is the problem with fruit; it's very acidic.

Mboston - Thanks for the suggestion of the prescription toothpaste. Will ask my dentist about it.

Flyleft.....there is a woman "tricae/" who posts ont he cooking forum. She has been struggling with sjogren's for a while. It's another of the auto immune diseases like lupus, arthritis etc.
She lives in Mystic Ct....if that's anywhere near you

Hey y'all -- I wrote Wednesday evening but it must not have posted -- I'm sorry! I was saying YES, terri & L, I want Sjogren's to get ruled out more than I want it confirmed, and there seem to be many overlapping symptoms of general menopause and this more specific syndrome. I have been reading, though, and saw that GERD is a symptom too -- in the last few months I've suddenly developed it after never having it my whole life, and I've been wondering *why*. And these mouth sores--what the *heck* -- I've never had these before. They're so *strange*. Maybe it's all coincidence and not this. I'd really prefer it that way. I have to wait until at least 5/23 to start finding out. I understand that there are some blood tests that will really help narrow things down.

sable, right re the sugar/acids. I was just saying that in addition to the problems with mouth-dryness issue, I didn't want to add more potential momentum to the weight gain I'm battling. I'm sitting here drinking my coffee with a little sugar, too, so we're renegades together : )

Thanks for the lead on the person on the cooking forum, linda. Mystic *used* to be near me, before we moved to Oregon : )

Off to have a afternoon-to-evening date with my husband! -- DD is off at the U of O at her first Model UN conference until late Saturday!! : )

From your original post it sounds like you might also be suffering from dry eyes.

I'd recommend seeing your eye doctor and asking about punctual plugs. For years my optometrist told me eye drops and Restasis were my only options for relief. Neither worked for me so I went to an ophthalmologist. They tested me for dry eye and, with my history of trying everything else, suggested punctual plugs in my 2 lower lid tear ducts (we have 2 more on upper lids). Really quick and painless. Now I only need eye drops in the winter when I'm working long hours at my computer.

Oh, and if you do choose to get them I would insist on SmartPlugs.

Well, I have to go to the eyeglasses place today anyway (my glasses broke) and I'll ask about that testing--whether they do it or where I should go to have it done. I just now learned what tear ducts are...DUH...they *drain* the tears, not produce them. I've had that wrong all these years. Thank you so much for the posting that prodded me to look it up, finally, jennifer.

Sjogren's Syndrome has been in the news due to Venus Williams. If anyone's interested in more info, you might find this link useful:
NYTimes Interactive__The Voice of Sjogren's Syndrome

Hang in there, flyleft. Autoimmune stuff is a drag--but there's lots that can be done these days. Key thing is to find a rheumatologist who LISTENS to you. It may take awhile to find the right doctor for you, but it's worth the search.

I'm on my third (and final!) endocrinologist. She's wonderful at managing my thyroid issues.

melanie