Author Topic: New to Sjogren's Syndrome  (Read 291 times)

Eoenawi

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New to Sjogren's Syndrome
« on: October 07, 2017, 04:51:39 AM »
Hi everyone, I'm recently diagnosed with Sjogren's. While I might have slightly dry eyes (I thought this was due to daily contact lense use) and thirst frequently, my major complaint is actually joint pain and extreme fatigue during flare ups. Even the slightest task I do will bring out big bullets of sweats from my forehead, dripping to my eyes and nose. I don't feel the dryness that bad (yet?). Would you please advise if at one point in life the dryness may progress? I have extremely low vitamin D, so mostly my complaints are related to joint pain, anxiety & sleep depravity. Thank you for taking the time to read my message. :)

dry2010

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Re: New to Sjogren's Syndrome
« Reply #1 on: October 09, 2017, 06:34:39 AM »
Sorry you got this diagnosis it?s the gift that keeps giving. I have been diagnosed since 2010 and have periods of calm and flares out of nowhere. I did find out I am hypothyroid so not sure sometimes which of these is driving my symptoms.
Right now I am having crazy joint pain not sure if I need thyroid med tweet. I have a Rheumatologist appt on 10/30 so I?m sure my labs will help figure it out.
Cutting gluten helps plus limit sugar take your meds and use Restasis for your eyes.
Do you take Plaquenil and Evoxac?
Dry2010
Diagnosed SJS March 2010, Gerd, Plaquenil & Generic Evoxac, Vit d, ACV for GERD, Welbutrin,Flonase and Lotemax.

bloodless

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Re: New to Sjogren's Syndrome
« Reply #2 on: October 10, 2017, 10:24:08 AM »
Welcome,
 I get those symptoms too. Frustrating, especially the pain. Listen to your body and give it break when it needs it. Inform your rhuemy of all your symptoms. He/She can give you pain medication if necessary. As far as disease progression, it's unique to each person. You may never have more dryness than you have now. Hope all goes well.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

Navigator

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Re: New to Sjogren's Syndrome
« Reply #3 on: October 11, 2017, 02:08:01 PM »
Hi

You may feel better once you get your Vitamin D levels up to a reasonable level.  Low levels of Vit D can result in joint pain etc.   Many of us have had to take prescription levels of Vit D over several months. ...Levels one can not buy over the counter.   I would ask your  doctor.

Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

angeldancer

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Re: New to Sjogren's Syndrome
« Reply #4 on: October 18, 2017, 02:29:45 PM »
I have to tell you that I have been trying to get my Vitamin D levels up for two years.  Yes two years and still not improved.  We need the vitamin D.  I know too much is not good for us but something tells me that our bodies do not want to process it for whatever reason.  I am going to look into someone that can possibly give me infusions of Vitamin D.  Let me try to look up the topic here and see if anyone has discussed.  If i find something I will let you know.  Vitamin D is important to us and mine are super low too long.
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,