1. < Autoimmune Diseases

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.

sueleerock | @sueleerock | Feb 24, 2019
In reply to @sueleerock "I am not sure who i'm replying too. But everyone is very kind on this site...." + (show)
@sueleerock

I am not sure who i'm replying too. But everyone is very kind on this site. Thank you. I'm half-blind and typing on a small phone. I have no car, no energy to do anything, two broken feet, herniated disc, last stage cirrhosis. Right now my energy is going toward 46 years of beautiful items I have collected to sell for money. My old dog betsy is sick can't take her to the vet, and for that matter, can't take myself to a doc, they know I'm a charity case. I worked for 30 yrs. I cant deal with being sick and broke at the same time. LOL. Thanks to everyone for all the kind words.

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I reread what I wrote. Did not list all medical complaints, because no one wants to hear it. But since getting sjorgens, I could probably add on another entire pg. Of complaints. Too numerous to mention. As I said previously, it really does feel like I am fighting every day just to stay alive. One thing I make sure I have money for is my fish oil and my antioxidants. My dad died at 51,'mom at 67, heart attack. I also went to 3 doctors just recently that I complained to about not being able to breathe. Not one of them referred me to a specialist. They told me I was fine. I referred myself to find out emphysema and copd. Too much on top of everything else. Did quit smoking, although after 47 yrs. (Gross) of smoking when I'm stressed like now that is a terrible struggle too.

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peach414144 | @peach414144 | Feb 24, 2019
In reply to @lioness "@peach414144 I'm so sorry for all you are going through . If you can find a..." + (show)
@lioness

@peach414144 I'm so sorry for all you are going through . If you can find a group therapy ,not medical, but those who all have same as you it is very helpful. When I was first diagnosed with fibromyalgia there was a group that met in the hospital ,not hospital personal so we talked about what we had extent to it and how some people used different things that helped them Just a suggestion but this did help me understand some things and some useful tools that I still use .

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Yes, you are wise. I did look for any group but it seems where I live they do not exist. Of course if you can pay a social worker that is about the only way where I live.

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geneseos | @geneseos | Mar 21, 2019
In reply to @colleenyoung "Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you..." + (show)
@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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hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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2 replies
dlm1215 | @dlm1215 | Mar 22, 2019
In reply to @peach414144 "@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc.,..." + (show)
@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

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Hi...I was reading your comment....I have RA,severe osteoporosis and sjogrens...my teeth are a problem....loosing one at a time...chewing miserable... going into Tufts Dept of Oral Medicine and hope I get some perspective on tooth loss... with bone loss I am nervous and recently cancelled appt for iv Treatment for osteoporosis that has jaw necrosis as side effect...I am having some teeth pulled....maybe later

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cinnamon215 | @cinnamon215 | Mar 22, 2019

Can anyone tell me where I can find medical research documents or medical text that connects autoimmune condition(s) to tooth loss and/or cracking? I understand there is a connection to dry mouth / Sjogrens and perhaps others.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 22, 2019
In reply to @cinnamon215 "Can anyone tell me where I can find medical research documents or medical text that connects..." + (show)
@cinnamon215

Can anyone tell me where I can find medical research documents or medical text that connects autoimmune condition(s) to tooth loss and/or cracking? I understand there is a connection to dry mouth / Sjogrens and perhaps others.

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@cinnamon215 here's a few that may help...

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
-- https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
-- https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
-- https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

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2 replies
cinnamon215 | @cinnamon215 | Mar 22, 2019
In reply to @johnbishop "@cinnamon215 here's a few that may help... Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a..." + (show)
@johnbishop

@cinnamon215 here's a few that may help...

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
-- https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
-- https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
-- https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

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Thank you, John!! YOU MADE MY DAY!

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zenk | @zenk | Mar 23, 2019
In reply to @geneseos "hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on..." + (show)
@geneseos

hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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Hi Geneseos

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zenk | @zenk | Mar 23, 2019
In reply to @geneseos "hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on..." + (show)
@geneseos

hi, all, I have sjogrens with small fiber neuropathy, no meds helps and I am on I v. I g , no changes yet, and it has been seven months, anyone else

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Hi Geneseos, I have Sjogrens too. I have neuropathy in my feet and lower leg. I am going to a Neurologist in April . How did you get your diagnosis of "Small Fiber Neuropathy" . What are your symptoms? Were there any conclusive test for the diagnosis.
I have been taking Gabapentin at night and pain killers in the day. Do you take anything other than IVIG ?
Wish the IG would help you. Have you looked at any of the CIDP literature? Thanks so much, Zenk

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1 reply
lioness | @lioness | Mar 23, 2019
In reply to @johnbishop "@cinnamon215 here's a few that may help... Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a..." + (show)
@johnbishop

@cinnamon215 here's a few that may help...

Autoimmune Diseases and Oral Health: 30-Year Follow-Up of a Swedish Cohort
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872203/

Autoimmune Conditions and Oral Health
-- https://www.hss.edu/conditions_autoimmune-conditions-and-oral-health.asp

Role of Autoimmune Responses in Periodontal Disease
-- https://www.hindawi.com/journals/ad/2014/596824/

ARE BLEEDING GUMS THE FIRST SIGN OF AUTO-IMMUNITY?
-- https://terrywahls.com/are-bleeding-gums-the-first-sign-of-auto-immunity/

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@johnbishop I like your new picture

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