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Please! I have questions about Sjogren's Syndrome! (Long, sorry)

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Posted 1/13/2009 10:40 AM (GMT 0)
I noticed that a lot of forum members have what they call "Sjogren's Syndrome"

I kind of always glanced at the word but didn't think really what it was... I got so curious tonight (have bad insomnia AGAIN from my mania so I'm wide awake to read!!!!!...) so I looked it up.

I'm not being a hypochondriac here, every single symptom I have read is something that has bothered me for a while now, please hear me out:

-Dry mouth, which can even make swallowing difficult at times (I've had swallowing problems for quite some time now) I ALSO tend to have an "itchy" feeling on my TONGUE! Would that have anything to do with this maybe?

 

-Dry eyes, I am always scratching at my eyes even though I put drops in them daily, no matter how much I wash them out (I've tried all temperatures of water!) it always feels like there is "grit" in them, which is the word they used on this one site.. "grit" or "sand", AND sometimes they even burn!!! (And I do not wear contacts)

 

-Mouth sores, I've posted another thread before about having mouth sores...

 

-Cavaties, I am one to always develop cavaties even though I take very good care of my teeth (brush after every meal, floss, use mouth wash daily, etc.)

 

-Dry nose and throat, at times I will have a cough or a "tickle" in my throat that will NOT go away.

 

-Eyes sensitive to the light, this could be from the Fibro itself, but my eyes are VERY sensitive to sunlight and even computer or TV light.

 

-(Not to be too personal but...) Dryness "down under", I have been to my doctor because of itchiness/dryness there, and he never found nothing going on, like a yeast infection, or anything like that; But it makes intercourse painful sometimes!!!

 

-Fatigue (Which might just be from my Fibromyalgia of course)

 

-Other problems, such as very dry skin and tingling/numbness, which are all things I am always experiencing. I was planning on discussing the tingling/numbness at my next appt.

Am I correct with all of these symptoms? Is there anything else I should know?????

confused  Other questions I have: confused

-Do I speak to my family doctor about this or bring it up when I go to my Rhuemy on the 22nd?

-Am I even in the proper age rage that is usually affected by this? (I'm very young!)

-What would they even do for it if they discovered I do have it?

-Is this something serious???? I read something about it affecting internal organs and everything!!!!!!!

-HOW DO YOU EVEN PRONOUNCE IT? LOL rolleyes

PLEASE! I'd appreciate anyone's input!!! BE HONEST WITH ME! Thank you soooo much!

-Jenna

____________________________________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

 

Posted 1/13/2009 1:31 PM (GMT 0)
hi jenna,

i am sorry i don't have any info on this for you, but i too am very curious what others have to say..i have all of those same symptoms, too!! i've always just chalked them up to fibro but now i wonder..
Posted 1/13/2009 2:33 PM (GMT 0)

Me too Jenna...I have ALL of those symptoms also...  Doc never mentioned Sjogrens to me.  I think the possibility of it is picked up in an ANA and if you have that test done and it was negative, my thought is that you probably just have fibro.  But better to be safe than sorry so mention it to doc and see what he thinks.  I have a friend that has had it since her mid twenties and she is now almost 60 so it must be treatable.  My skin is so dry and scaly that after I use a bar of soap, it feel like it has grit in it!

donna

Posted 1/13/2009 3:22 PM (GMT 0)
i just thought of another question re: sjogren's and dry eyes. sometimes when my eyes feel quite dry and itchy, i get this weird red rash all around my eyes (upper eyelids, right below lower lashes) and was just wondering if that happens with sjogren's and does anyone else have this at all?
Posted 1/13/2009 4:10 PM (GMT 0)
Hi Jenna,
Well, before I was diagnosed with Fibro, I went for testing for SS. Usually an ophthalmologist is the one that will verify with simple tests. I have suffered with all of those symptoms as well. Some cleared up, and others hang around like the dry eyes, dry mouth.
The dry eyes and mouth is fibro related. The sores in the nose and mouth is due to dry air and excema and can be related to a vitamin deficiency. If you read through the fibro 101 thread you will see a lot of the same symptoms common in fibromyalgia.

I am not sure what the treatment is for sjogrens, you could google it to find out. But, thought I would respond since I was tested for it. Hope you get a better answer for your questions.

Sincerely,
Kathy
Posted 1/13/2009 4:45 PM (GMT 0)

Sjogrens is an auto immune disorder of the mucus membranes. I was dxd while doing all the test to find out what was wrong with me. They thought that was what was causing all my problems for awhile. It not only affects your eyes, mouth, nose, throat, vagina but it can cause gastritis and other digestive disorders and cause the mucus in your lungs to be thick. I have a saliva gland under my tongue on right side that has been swollen for a long time from sjogrens.

It is easy for them to check your eyes with the tear test.

luv and hugs

Marlee

Posted 1/13/2009 4:52 PM (GMT 0)
marlee,

i have a question about the thick mucus in your lungs you talk about. please forgive me for it, though, because it's going to sound really gross. i just don't know how else to explain it. does this cause large clumps of mucus in the morning? i get this almost every day firs thing. sometimes it has color, but it's usually clear/whitish. during the rest of the day i can feel mucus in there, but don't cough as much up during the day as i do first thing in the morning. my dr. treated this as a sinus infection, but after several rounds of antibiotics gave up because it wasn't helping. also, every time i've been in to see her she says my lungs sound clear. they sure don't feel clear, though!

i'm so sorry to hijack your thread, jenna, but when i saw marlee say that, it made me wonder...

thank you so much!
Posted 1/13/2009 10:40 PM (GMT 0)
Danielle,

I actually asked people in a Sjogren's forum about it and explained to them my symptoms in detail and this is what the one lady had said, since you and I are so curious here:

Sjogrens(Show-grins)is the second most common autoimmune illness in the US today.In spite of this many people are not even aware of it or if they are understand how this illness works/or what it can cause.It is very similar to SLE and there are blood markers to test for it.Some drs will treat you for symptom manifestation even if you test neg.I would speak to the rheumy on your appt as they are the dr that deal w/treatment.There is no cure for it just meds to help manage the symptoms.

Once I talk to my doctor and find out more, I will definately let you know!!!!!

And thank you Marlee for your answers and everyone else for your replies!!!

I will keep you updated.

______________________________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Posted 1/13/2009 10:50 PM (GMT 0)
I was dxed by my Rheumy. Mostly my Sjogren's just affects my mouth and throat. I have constant dryness and drink ( water or diet pop) all the time. All that water makes me go to the bathroom all the time. I have tried the mouthwashes and gum for dry mouth--they help some. The biggest problem with my throat is constantly clearing it, sometime it gets so dry, I feel like I can't breath. I always carry altoids for this reason, they will make my mouth water right away. I also had trouble waking up with a dry mouth--as in totally dry and leathery. But now I have a CPAP for sleep apnea and it has a humidifier, plus I sleep with my mouth shut now. Hope you get some help. Diane
Posted 1/14/2009 1:12 AM (GMT 0)
Thats funny because I was asking about the cavities and dry mouth also and I am going to an internist on the 22nd, and I think I will ask to be tested for sjodrens syndrome. I have mainly the dry mouth, yeast on my tongue, also difficulty swallowing, it does feel like it is hard to breathe, last night I thought I was having some type of allergic reaction, because it was like a lump in my throat, also have dry cough, and also dry in the personal areas also. I dont have the dryness in my eyes. It is so bad in my mouth, it is like there is sand in it. The dentist said I must be chewing on candy or sugar because the cavities that have developed in my mouth grew so quickly everywhere. I had to tell him I am a health nut and I do not eat any sweets or junk food. I did also have many tests and every blood test that there is, so wouldnt that have shown up?

I will keep you posted, but I also see a lot of people in this forum with this so who knows.

Have a great night! 

Posted 1/14/2009 3:04 AM (GMT 0)
Momteach, your mouth is worse, really?

My eyes are my main problem... they itch soo bad ALL THE TIME, always extremely red and vainy from the irritation.. I use so many eyedrops and it just doesn't help...

But yes, I also have the dry cough.

Thanks for your reply

___________________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Posted 1/14/2009 7:03 PM (GMT 0)
This forum keeps me so busy I never go on the sjogrens forum but maybe I should to get some tips.

 

Danielle, yes I cough up clumps in the morning. When I cough it usually is a productive cough. I get yearly chest x-rays and just had another one when I went to ER for ribs and my lungs are clear. My doc always listens to them too when I go for check-up.

 

If I'm not constantly drinking something my throat gets so dry I get a sore throat and even worse I will gag. I never leave home without a bottle in my purse and extras if I'm going to be gone for a long time. I have even taken bottles of water to funerals so I don't start coughing. Like Diane said the over the counter stuff works for awhile but I haven't found anything that last for very long.

 

luv and hugs

Marlee

Posted 3/4/2009 5:26 AM (GMT 0)
see i started out with thrush quite often ih thought it was the toothpaste,then the excessive the irst and dry eyes, i tested positive for sjogrens but i have secondary hthats when another connective tissue disorder like lupus,arthritis ,scleraderma or like me i have crohns disease and thyroiditis that caused mine, my doctor said it is common in women of menopause due to hormonal fluctuation.it hOPE I Can be of some help god bless u all
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