by hightechgrammy 28 Jan 2014

Sjorgren's Syndrome I'm wondering if any Cuties have this? I just received that diagnosis today.


It's an autoimmune disease where the body attacks its own moisture producing glands, put very simply.

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by shozo1271 30 Jan 2014

Stay Strong!... flowers to all.

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by drro 29 Jan 2014

Dear Jan, You are in my prayers dear friend!

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by babsie 29 Jan 2014

So sorry you are unwell and I will pray for your recovery, Take it one day at a time and do lie down if you are feeling tired. This is the first time I have heard of the disease. Hugs

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by noah 29 Jan 2014

never heard of it but my eyes are really dry and i am to use natural tear eye drops as often as i think of it .Getting old sucks:(:(

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by basketkase 29 Jan 2014

Oh, Jan, so sorry to hear of this disease you have.......I also have dry mouth and desert dry eyes but didn't know it could be from a syndrome.... I blame mine on aging and allergy meds.......hopefully you can get some relief quickly.....hugs to you.....

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by bevgrift 29 Jan 2014

Sorry that you have this desease.
About the dry mouth though Honey and Ginger Tea are good before bedtime. Both the ginger and honey have antiseptic and soothing properties.Thought it may be helpful.
Hugs and feel better soon.
Bev

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by lidiad 29 Jan 2014

Sorry to hear that you have this disease. I have dry eyes and dry mouth too, so I understand you. From the test done, the Sjogren's Syndrome has been excluded, still it's uncomfortable, especially when you wake up in the morning with your mouth dry. I keep a small bottle of water on the floor near my side of the bed and take a sip or two whenever I need it, and that helps until I get up from the bed. Also I use Biotene products like Biotene Dry Mouth Gum, and mouth wash.
Wish you all the best,
Hugs, Lidia

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by sewilso 29 Jan 2014

I'm sorry to hear that, I'm not familiar with it either, I imagine in the winter it's worse with low humidity? I hope and pray the solutions offered will keep symptoms as comfortable as possible. Sharon

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by pennifold 28 Jan 2014

Sorry Jan to read of this syndrome. I've just been reading all the information on the internet about it. Please take care and listen to your doctor's advice. Good luck with all of the medications available for you. Love Chris

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by hightechgrammy 28 Jan 2014

I went to the Ear Nose Throat doctor because i knew my sinuses were messed up. I choke on my own thick saliva, and I think there is drainage back there. He said I had a lot of malformations inside my nose. So, I had that surgery, and now it is cavernous in there - LOL. He also thought I might have this Sjorgren's so he also did a biopsy of the salivary glands in my lower lip to determine that. I wasn't really surprised, but kind of, when that came back positive. I have a lot to learn. All I do know, is I've had these symptoms for a long, long time. I'm hoping I'll learn how to manage all this dryness throughout my body. Thanks for all your concern and prayers.

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by katydid 28 Jan 2014

So sorry, I am not familiar at all. Please tell us symptoms and more. we are here for each other! Kay

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hightechgrammy by hightechgrammy 28 Jan 2014

Thanks, Kay Dry Eyes, dry mouth, swallowing problems, achy joints, fatigue are the main symptoms - I think = LOL

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by gerryb 28 Jan 2014

Jan, take care & follow your doctor's advise! From the posts below, looks like there's some good suggestions. Praying it goes into remission very quickly!

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hightechgrammy by hightechgrammy 28 Jan 2014

I don't even know If it is "active" or in remission now - LOL!
Thanks gerryb!

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by airyfairy 28 Jan 2014

Dear Jan - So terribly sorry to read your post. You already have so much on your plate. Please look after yourself and try and get plenty of rest. Love and hugs Sarah.

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hightechgrammy by hightechgrammy 28 Jan 2014

Thanks, Sarah, I don't even know if it is a big deal or not. I have had this going on for such a long time.....

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by dragonflyer 28 Jan 2014

So sorry to hear this...take care of yourself and get lots of rest...you are in my thoughts and prayers...

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hightechgrammy by hightechgrammy 28 Jan 2014

Now I have an excuse to go to bed!!

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by rescuer Moderator 28 Jan 2014

You are in my prayers.

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hightechgrammy by hightechgrammy 28 Jan 2014

I always need prayer, my dear friend!!

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by arlinda 28 Jan 2014

my daughter as it and Lupus and the past was in hospital in Cape Town and know is Neuro SLE (Lupus) believe me it is a battle every day of her life and she is only 30 came next month

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hightechgrammy by hightechgrammy 28 Jan 2014

Oh, I sure hope I don't have LUPUS also! God bless her!

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by sassylady 28 Jan 2014

Yes, I have it, as well as Lupus and Fibromyalgia. Liquid tears help the eyes and there is a mouthwash that helps with the mouth. If you have dentures you will have a lot of hot spots under your dentures. Anbasol helps. The nose, I have not found to much, I do use a lot of vicks in my nose, but Vaseline might work just as well. Make sure you get plenty of sleep, even if you have to take meds to do it. Your body can not heal without sleep. You only have one right now, take good care of yourself because you don't want anymore autoimmune responses.

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hightechgrammy by hightechgrammy 28 Jan 2014

I don't even know yet if I have just the Sjogrens only now. I do know I have had this for a long, long time - like maybe 10 years. My eyes are so dry, and so is my mouth. My body aches really badly a lot of the time, so maybe this is why. I don't know anything at all about it, so I have a lot to learn, don't I? Thanks for the advice.

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by cfidl 28 Jan 2014

Bummer! I am so sorry to hear this. I hope it is not painful. Call me if I can do anything. Hugs

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hightechgrammy by hightechgrammy 28 Jan 2014

thanks, Christine. We just need to chat sometime!

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by jrob Moderator 28 Jan 2014

Jan, I am praying for you. Please let us know how you do when your treatment starts. It's good to have a diagnosis at least you can prepare for battle. Hugs

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hightechgrammy by hightechgrammy 28 Jan 2014

I didn't know what I was dealing with before... at least now I know :-)

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by sandyqueen 28 Jan 2014

I have rheumatoid arthritis which is a cousin disease to yours. I was on Enbrel injections from 2004 until 2011. Now I am in remission. Be sure and read up as much as you can so you can make informed decisions about your care. Mine affects joints and internal organs so I carefully see my specialist every year. There are wonderful meds now for autoimmune diseases. My thoughts and prayers are with you.


SQ

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hightechgrammy by hightechgrammy 28 Jan 2014

Sandy, I don't even know if I am in an active phase, or what! I ache so bad I can't sleep lots of nights. My brother has rheumatoid arthritis and I wonder sometimes If I have that, but my joints are not hot. I have some days when it is very painful to move though. I just didn't know why. I'll be learning a lot about it now. Thanks for the help!

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