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Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

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@gemmax True. I have always had the 'Village' mentality. We humans are by nature social beings, and are where we are today (not in caves) by standing by one another.

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Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2018
In reply to @gemmax "@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born..." + (show)
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@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born into it after her mother ws taken from Mopzambique. I sat down and cried for her and her mother and younger sisters and brothers. Her burial place remains unknown as does my 3xgrandfather, a european . I still cry for the atrocities of man. I take some solace from these words from Ecclesiastes 12:7 "Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.” It is my belief that God knows us all. Our legacies, our prayers are not lost. I can't know your pain, but I can care about all the lives that have been lost to evil. Be blessed.

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@gemmax Sounds like you have an interesting lineage. I have a photo of an oil painted portrait of one of my great greats going back to 1470. His face and hair look exactly like me. When I show it to friends, they think it is me and that I had it done at one those boardwalk shops. You know the ones that take sepia tone old-timey photos? It was bizaar to see such a strong resemblence after so many generations.

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Gem | @gemmax | May 14, 2018
In reply to @gemmax "@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born..." + (show)
Profile picture for Gem @gemmax

@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born into it after her mother ws taken from Mopzambique. I sat down and cried for her and her mother and younger sisters and brothers. Her burial place remains unknown as does my 3xgrandfather, a european . I still cry for the atrocities of man. I take some solace from these words from Ecclesiastes 12:7 "Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.” It is my belief that God knows us all. Our legacies, our prayers are not lost. I can't know your pain, but I can care about all the lives that have been lost to evil. Be blessed.

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@windwalker I have a large family, but I look different from most and had always wondered where my appearance came from. Then I came across a gggrandmother who is ¾ cherokee and although my skin is English like my mother, I looked so much like her that I couldn't believe it. I loaded the two pictures one of her and one of me on top of each other in a program that i have and changed the transparency and there we were a perfect match! I find genealogy very interesting. I started years ago and collected documents as i went along. I love to restore old photos too.

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Texas Freedom | @oregongirl | May 15, 2018

Gem...Where did you learn all these things like genealogy and restoring old photos. Did you take classes or teach yourself

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Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @gemmax "@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born..." + (show)
Profile picture for Gem @gemmax

@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born into it after her mother ws taken from Mopzambique. I sat down and cried for her and her mother and younger sisters and brothers. Her burial place remains unknown as does my 3xgrandfather, a european . I still cry for the atrocities of man. I take some solace from these words from Ecclesiastes 12:7 "Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.” It is my belief that God knows us all. Our legacies, our prayers are not lost. I can't know your pain, but I can care about all the lives that have been lost to evil. Be blessed.

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@gemmax I find genealogy very interesting as well. I think it would be great to also have health history in that data bank so that future generations can learn what to watch out for.

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jeanw28 | @jeanw28 | Jun 1, 2018
In reply to @johnwburns "Sorry to hear that. Sjogren's is a big topic. How were you diagnosed, as in what..." + (show)
Profile picture for JohnWBurns @johnwburns

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

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I have just been diagnosed with primary Sjogren's via a lip biopsy. I was Ro and La negative. I have very dry eyes which I am managing reasonably well with eyedrops and dryness down below which I am using topical oestrogen for, I have been started on Pilocarpine (Salagen) 2-3 times a day. I was led to believe that I would not get any systemic symptoms but I do have some symptoms of fatgiue - not crippling but enough to make my working life difficult, I am 53 years old and have been told the fatigue is just part of the menopause but I am not convinced. What are the best ways to help with the fatigue or is it just a case of accepting it and pacing yourself? Any advice would be very much appreciated.

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peach414144 | @peach414144 | Jul 13, 2018
In reply to @colleenyoung "Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you to a few other members who also have Sjogren's. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I'm confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG - why type of pain do you experience and what methods or treatment do you use to try to manage it?

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Dear

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Profile picture for jeanw28
jeanw28 | @jeanw28 | Jul 14, 2018
In reply to @johnwburns "Sorry to hear that. Sjogren's is a big topic. How were you diagnosed, as in what..." + (show)
Profile picture for JohnWBurns @johnwburns

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

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I was diagnosed by lip biopsy and I have a dry mouth and dry eyes. I use eyedrops regularly and also take Pilocarpine (Salagen) to help my salivary glands be more productive. I have no other auto immune diseases. I was diagnosed a year ago but have had dryness symptoms for many years. I was Ro and La negative on a blood test so my rheumatologist is hopeful that I will not develop the joint problems and tiredness.

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Profile picture for Texas Freedom
Texas Freedom | @oregongirl | Jul 14, 2018
In reply to @johnwburns "Sorry to hear that. Sjogren's is a big topic. How were you diagnosed, as in what..." + (show)
Profile picture for JohnWBurns @johnwburns

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

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Jean,. Good news for you. I have had RA for at least 10 yrs. The drugs are hard on me. I try to get thru the episodes with only Tramadol. Very very light drug. Recently my ocologist is finding something suspicious in my blood. He is not ruling out multiple Myeloma. I am doing one more blood test which somehow was damaged. I truthfully believe I do not have Myeloma. I suspect what you have. I fogot the name of disease. We can survive that. I am so sick of taking pills and being so tired and low energy. God Bless. Lee

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Profile picture for Texas Freedom
Texas Freedom | @oregongirl | Jul 14, 2018
In reply to @cmtg "I have all the symptoms above you described except never had a lip biopsy, Dr said..." + (show)
Profile picture for cmtg @cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did't make myself clear to you.

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I find it so hard to accept the time it takes doctors to determine disease. What are they teaching in dr school. I have had so many hard to stand tests with promise that after THIS test we will have a determination. They never do. I must have a new disease or need new doctors.

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