1. < Autoimmune Diseases

Sjögren’s Syndrome: how do you manage the symptoms?

Posted by eileenb1022 @eileenb1022, Feb 23, 2023

Hi
I see a rheumatologist next week for sjorgens syndrome. Last summer a sinus doctor I saw mentioned it to me and recommended I see a rheumatologist. I never had heard of sjorgens and I have never been to a rheumatologist. At the time last summer. My only symptom was very dried out mouth. I developed dry eyes only a few months ago. The otc drops for dry eye stopped working unless my eyes were just getting worse so my eye Dr recommended something stronger otc. It's better. He did prescribe me restasis but unfortunately even with my insurance it was too expensive so I could not get it. But my other concern is the body/joint pain I ha e been having. It's gotten so bad tonight is the first time I have been up all night. I do have a unrelated degenerative changes near my lumberspine which is causing other embarrassing issues but my other pain started actually even way before the dry mouth. It started very soon after my gallbladder surgery last January. It started in my upper back spasms and just painful. Worse now then last 6 months went to my shoulders that's very tender, my neck. Arms. I read a article about sjorgens pain being similar to fibromyalga pain. I wondering if anyone thought it was sjorgens related being this painful or maybe something else? I have wanted imaging, preferably a mri bur been unable to get it. I'm hoping next week the rheumatologist will order something. Also last summer my sinus doctor did order bloodwork some sjorgens antibody bloodwork 5 of them and they were all normal. Although now with my symptoms progressing I wonder what bloodwork now would show. Any feedback would be greatly appreciated. Thank you.

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shiprock | @shiprock | Mar 10, 2023
In reply to @becsbuddy "@shiprock Your comments are so positive and helpful. They inspire me to get busy and not..." + (show)
@becsbuddy

@shiprock Your comments are so positive and helpful. They inspire me to get busy and not let my autoimmune disease get me down. Thank you!

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Thank you. Please don't let your autoimmune disease get you down. Find a way to live with this disease that allows you to find joy in your day.

REPLY
dancing1 | @dancing1 | Mar 11, 2023
In reply to @lilymol "Forgot to mention how I cope:) I exercise 5-7 times a week. Initially I had to..." + (show)
@lilymol

Forgot to mention how I cope:) I exercise 5-7 times a week. Initially I had to start very slow due to the POTS. Once I started on Plaquenil/exercise some of the joint pain subsided. I have resigned myself to living with some pain. I was using a humidifier until I saw a pulmonologist at National Jewish Health. Interstitial lung disease is a risk factor, so she said no humidifiers, hot tubs, birds, down clothing.....all that said you have to decide for yourself what you can live with and without. Sjogrens affects us all differently so partner with a knowledgeable doc and do the best you can:) My disease has progressed, and we are still trying to find a drug to slow it down. I had an infection in the fall of 2018 which started this autoimmune cascade (sjogrens plus other AA diseases). Before that time I did not have autoimmune disease or if I did it was subclinical and I was symptom free. For dry mouth I use products with xylitol in them and I have some for night and some for day. Dry lips I use products with lanolin. I use autologous eye drops and steroid drops in my eyes daily. I drink 2-3 liters of fluids daily. Take care with meds that make dryness worse, I stay away from fans, stay out of the heat, take meds daily, watch my diet, and exercise almost every day (gentle exercise).

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Can you please tell me what you use for your lips … nothing is working for me. Even ones suggested by mayo doctors. Thank you.

REPLY
lilymol | @lilymol | Mar 11, 2023

SuperLan for lips Amazon
Organic Lanolin Lip Balm For Dry, Cracked, Chapped Lips By Superlan- Natural Lip Moisturizer With Ultra-Pure Medical Grade Lanolin & Jojoba Oil- Kosher Chapstick for Men Women & Children, 0.35oz (10g)
Visit the superlan Store
4.3 out of 5 stars 135 ratings | 5 answered questions
Amazon's
Choice
for "superlan lips"
Price: $12.99 ($37.11 / Ounce)
FREE Returns

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1 reply
dancing1 | @dancing1 | Mar 12, 2023
In reply to @lilymol "SuperLan for lips Amazon Organic Lanolin Lip Balm For Dry, Cracked, Chapped Lips By Superlan- Natural..." + (show)
@lilymol

SuperLan for lips Amazon
Organic Lanolin Lip Balm For Dry, Cracked, Chapped Lips By Superlan- Natural Lip Moisturizer With Ultra-Pure Medical Grade Lanolin & Jojoba Oil- Kosher Chapstick for Men Women & Children, 0.35oz (10g)
Visit the superlan Store
4.3 out of 5 stars 135 ratings | 5 answered questions
Amazon's
Choice
for "superlan lips"
Price: $12.99 ($37.11 / Ounce)
FREE Returns

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Thanks!

REPLY
angellav | @angellav | Mar 14, 2023

I have mild RA after nearly a year on methotrexate I noticed a change in my eyes I developed sjorgens syndrome. For the past 3 weeks I have itching from my scalp, ears , neck breast and rash develops , I also have sweating . A doctor told me I might have Lupus and to have my rheumatologist have it tested. I am taking prednisone and plaquinil. I am very scared I don’t know how to cope or where to begin with 3 autoimmune disease. Can someone please share there story of hope and help me cope.

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lilymol | @lilymol | Mar 15, 2023

Good morning, when first ill I saw a grief counselor which I found very helpful. I use the Calm app every morning and do 3 short meditations daily, I also do the treadmill (very slow:) almost daily. I have good friends that I chat with daily too..... and I drink lots of fluids. Medicine has become one of my good friends. My life has changed so drastically but so have I. I am sorry you are a member of the multiple autoimmune club. Oh yes Sjogren's advocate is a great website and offers lots of education and support as well as the Sjogren's Foundation. In my opinion you have to be your own advocate with autoimmune diseases especially Sjogren's. Sending hugs.

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1 reply
basslakebabe19 | @basslakebabe19 | Mar 16, 2023

I had it one time one ago but overcame it!

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burlingtongirl | @burlingtongirl | Mar 17, 2023

Hoe did you overcome it

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angellav | @angellav | Mar 17, 2023
In reply to @lilymol "Good morning, when first ill I saw a grief counselor which I found very helpful. I..." + (show)
@lilymol

Good morning, when first ill I saw a grief counselor which I found very helpful. I use the Calm app every morning and do 3 short meditations daily, I also do the treadmill (very slow:) almost daily. I have good friends that I chat with daily too..... and I drink lots of fluids. Medicine has become one of my good friends. My life has changed so drastically but so have I. I am sorry you are a member of the multiple autoimmune club. Oh yes Sjogren's advocate is a great website and offers lots of education and support as well as the Sjogren's Foundation. In my opinion you have to be your own advocate with autoimmune diseases especially Sjogren's. Sending hugs.

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Thanks for hugs when I’m hurting. Great tips, I will start with the grief counselor. It’s hard to accept the downhill turn in my life. Thanks for sharing.

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sphillips1952 | @sphillips1952 | Mar 17, 2023

You Guys r great! Thanks for all the support 😉 it really helps. I have several autoimmune issues, one being Sjogrens. I use Restasis 2x a day, Sustain 3-4 x daily, Salagen for the dry month. Does anyone have hot flushings, Not flashes. Usually at night out of the blue🤔❤️.

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