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Sjögren's Syndrome Message Board
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Old 03-10-2013, 10:32 PM   #1
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Tested for Sjogrens...

I was recently tested for Sjogrens due to the fact that my mouth and eyes are constantly dry....I have blurry vision (in my left more than my right) which I newly have to wear glasses for...I also tend to get very light sensitive...I've been taking Systane Ultra fir the dryness of my eye and it has helped....sometimes I wake up in the morning with a mouth so dry i can barely swallow and feeling like I didn't sleep at all...and if I spend the day running errands etc, I get home and it's almost like a crushing fatigue...I can't help but fall asleep....I guess my question is if anyone can relate? Thanks

 
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Old 03-11-2013, 04:48 PM   #2
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Re: Tested for Sjogrens...

I'm not sure I can speak for anyone else, I'm new to this site....but boy, can I relate to these symptoms!! I was diagnosed with Sjogrens over a year ago although was symptomatic for about 15 years. I also have sleep disorders causing what little sleep I get to be unrestorative, making the exhaustion to be almost unbearable. The one thing I wished I knew before now is what it can do to your teeth and gums. I always had great teeth and strong bones, but now the calcium has been leaching from my teeth and bones and I have had to have all but a few teeth removed for dentures. My eyes are dry, but constant use of eyedrops and an eye ointment at bedtime has made me more comfortable. My vision changes all day long....sometimes I can see with my glasses, and other times the glasses don't help and I can't see well enough to read or go online. I am only able to use the computer for short periods of time before its all just a blur. Its so random, and of course when I went to the opthmologist the last time for my annual visit, the vision was pretty good. I've also been wondering if others with Sjogrens have random vision? Good luck in your journey and I hope you can find the rest you need. I'm also interested in the replies you get since it sounds a lot like me.

 
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Old 03-11-2013, 07:15 PM   #3
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Re: Tested for Sjogrens...

Do you notice anything different with your tongue? I have had a dry, sandpaper like tongue and the roof of my mouth has a weird film on it. My tongue is usually pale in color and today I noticed two dark red spots on it. I see my doc tomorrow for a follow up, as I was tested for Sjogrens too. But my eyes aren't dry anymore. I had a short period of dry eyes but was prescribed some drops that helped back then.

 
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Old 03-11-2013, 09:42 PM   #4
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Wink Re: Tested for Sjogrens...

My mouth has been so dry for so long I can't go anywhere without a beverage or water with me. I almost always have a drink in my hand. I have had sores in my mouth and on my tongue quite often. (Also in my nose) Years ago I used to enloy spicy foods and hot peppers and tolerated them very well. Today my mouth is so sensitive that foods only mildly spicy make my mouth burn and hurt. If. I try to drink a soda, the carbonation burns my tongue. I can't even tolerate regular toothpaste or mouthwash. I've been using Biotene sensitive toothpaste and mouthwash and it isn't as painful. I'm not sure if others have similar symptoms....I'd be interested to know if they do.

 
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Old 03-11-2013, 10:13 PM   #5
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Re: Tested for Sjogrens...

YES! I use biotene too- sometimes I do rinse with hydrogen peroxide mixed with equal amounts of water (1 tbs to 1 tbs) My tongue is driving me nuts though. It's always pale or has a coating on the back that is hard to brush off. I thought it was thrush in the beginning but doc said it wasn't. Now I have two red spots on it, one in the middle that stings/burns and one nearer the tip. Bright red. They aren't raised though. I am also having upper jaw pain/tightness and left ear pain/fullness which the ear fullness has gone on for a long time. So I thought TMJ. But nobody has really told me that is what I have either. Going to my doc tomorrow to find out results of blood work. I have a feeling it's not Sjogrens. My eyes aren't dry anymore, I did have a bout of dry eye back in Sept. I too am constantly drinking. I do drink a big diet pepsi every day though, but I drink lots of water. Soda does make my tongue worse. On the days it's got the burning/dry sensation I don't drink soda really. I also get leg cramps pretty bad at night...especially if I don't take calcet pills before bed. But even then I wake up with leg cramps some nights and they are horrible!! I am hoping doc can prescribe me some muscle relaxers or something for nights I know it's gonna be bad. And I clench my teeth at night - wear a night guard- but the clenching I can't control. So then I think.. I HAVE ANXIETY! But I dunno.. I mean the physical symptoms ARE THERE. A good dose of valium may cure me. LOL.

 
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Old 03-11-2013, 11:25 PM   #6
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Re: Tested for Sjogrens...

I will be anxious to see what the doctor says. There are so many reasons for dry mouth and eyes, getting a diagnosis is difficult. If your blood sugars are off or if you are diabetic, this can cause a person to be very thirsty.

I know I get leg cramps when my potassium is low. I have hypothyriod issues and wth Sjogrens, and fibromyalgia, my magnesim/potasium/calcium levels get out of whack and I need to add supplements when I start having leg cramps at night. I try to eat a banana every day to keep potassium levels up. The jaw issue I've never had, so can't help you there. Try not to stress out too much before you see the dr. Good luck tomorrow :-)

 
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Old 03-12-2013, 09:59 AM   #7
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Re: Tested for Sjogrens...

Withered- I take magnesium and calcium supplements every day and I take 2 calcet pills before bed. I also drink lots of water and I eat a banana almost every day or yogurt. Last night was so bad and I even took 10 mg of flexeril! I had twitches and spasms in my legs all night long and I got up twice to use the electric massager on them which I do every night before bed anyway. After I exercise I stretch them good. I also have a bad lower back (I slipped a disc in December working out) So then I aggravated THAT by jumping out of bed to relieve a cramp in my shin last night. I was up till 2 am dealing with those spasms/twitches. I really hope my doc can prescribe me a stronger muscle relaxer because I cannot go another night like that. I wish my doc had checked my thyroid. Hyopthyroidism runs in my family. I will let him know that today. The sad thing about all this is I pay 40% of everything with my insurance so I know the bills are going to be piling up and we are poor as it is. So I just need to be praying and relying on God through all this. On a sunny note, my jaw is not bad this morning! I think that is TMJ related though, and has nothing to do with my other symptoms. My dad is diabetic. Nobody thinks I am or tests me because I am in good shape and I workout. I think that is foolish. So I will ask my doc about that too. Thanks!!

 
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Old 03-12-2013, 10:23 AM   #8
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Re: Tested for Sjogrens...

Mandolyn,
Sounds like another rough night for you. I can relate, but fortunately things aren't as bad for me as they used to be. I'm not sure if I mentioned it but I have restless leg syndrome and periodic limb movement, and sometimes they ache so much, however they don't cause cramps as far as I know.

My mother also had hypothroid disease and it does run in families, so I'm glad you are getting that checked too. I know what a burden the financial side of these disorders are because I just got Medicare and I have been uninsured for almost 3 years. I had to quit an upper level management job due to my poor health and age. I was finally awarded disability which is a huge blessing, however, my bills continued and house payments and expenses arethe same as when I was working, now I have less than half of what I was earning. Its really bad when you have to go without needed tests that could possibly help diagnose and treat you. Let us know what the doctor says. Good luck.

 
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