I Have Sjogren's Syndrome

Personal Stories, Advice, and Support 149 People


    I have Sjogren's syndrome and am concerned about how it has progressed over the past 3 years. I was diagnosed with it after battling an infectionwhich was not properly diagnosed and treated for 8 months. The infection nearly killed me and sometimes I wish it had. The first...
    man7fred man7fred
    3 Responses Jul 31, 2010

    25 Years On...

    Hello. I was diagnosed 25 years ago. Ive found a number of coping mechanisms given I've experienced pretty much all of the symptoms at some point in time. Life is good and you can't let it get you down. Lowest point was spending literally 6 months in a dark room not being able...
    Junekent Junekent
    70+, F
    Aug 31, 2013


    I come from a family with multiple autoimmune diseases I was diagnosed with Hashimoto's, RA, and SJ about 30 years ago.  I am now 75, and feeling quite low. I was a successful professional photographer who travelled a lot, shooting landscapes in Europe, Mexico and USA.  Now I...
    mvsallyw mvsallyw
    2 Responses May 31, 2011

    Extreme Dry Eye

    I was diagnosed 11 years ago with sjogrens syndrome.  My diagnosis came from my dry eyes.  My eye doc. referred to my eyes as smouldering embers and if I keep the drops going in the embers will still be there but no fire.  Occasionally, an ember becomes a flame and I have to...
    Neldeway43 Neldeway43
    3 Responses Mar 30, 2011

    I Have Sjogrens, Lost All Hope

    I'm 17 and after 4 years of being ill I was finally diagnosed this year, certain medicines didn't work. I am just completely exhausted that it hurts to talk, and am in constant pain. I feel like i'm only living a half life, reading is my favourite thing but i'm to tired to even...
    Immievh Immievh
    4 Responses May 6, 2012

    Sjogren's And Acupuncture

    It took a year (end of May 2010) to finally get a diagnosis of Sjogren's Syndrome (my blood test showed no markers) based on the plethora of symptoms I presented; severe dry mouth, dry throat and cough, various forms of stomach problems (reflux, diarrhrea etc.). Since...
    vasquelx vasquelx
    6 Responses Jul 19, 2010

    My Friend Has Sjogren's And Is Suffering-is Quickly Losing The Will To Live.

    I am here due to the fact that my dear friend is suffering from SS. She is quickly losing the will to live. Dry eyes and dry mouth are the least of her problems. Her skin is like leather and suffers in pain everyday. My hope here is to find support for her and understanding of...
    mind2warp mind2warp
    9 Responses Jul 28, 2010

    Another Little Confirmation

    I'm Ava and 48. Had a lip biopsy two weeks ago and it showed sialadensis. Not sure of its spelling. I've had dry eyes and dry throat for years. Body pain, hair loss, chronic fatigue (Myositis), nausea, etc...I have had all these symptoms for 5 years. My first rheumy...
    Avaslittlesecret Avaslittlesecret
    46-50, F
    1 Response May 11, 2012

    The Invisible, Silent Disease

    I have an invisible, silent disease.  I never know what to expect from day to day.  I am learning to make the best of the good days and lay low on the bad ones.  My eyes are most worst enemy on bad days.  There are times I want to pluck them out or walk around with them...
    ronablair ronablair
    8 Responses May 17, 2012

    A Life With Sjogren's Is All I've Ever Known...

    I am a 24 year old with Sjogren's. You may think I am too young to already have Sjogren's and I agree; however, living with this disease is all I have ever known- I was diagnosed at the age of 2. Crazy right? As a baby, the glands in my neck and face, my periodic glands and...
    skeearns skeearns
    26-30, F
    3 Responses Sep 4, 2013

    Sjrogrens Is A Lonely Disease

    Hi Sjrogens is a lonely disease, most people can't relate to it.  I have had it most of my life but was just recently diagnosed when it got to the point I could not wear my contacts.  Mostly what bothers me is there is not people to hang out with. 
    jujufruit99 jujufruit99
    3 Responses Aug 28, 2010

    Sjogrens And Disability

    Hello, I am new to the site and somewhat new to the Sjogren's diagnosis, and just today I had my Social Security hearing for disability. I think it went well considering the Vocational expert said that I am unemployable, but did not get a decision right then and there. Does the...
    DawnV90 DawnV90
    46-50, F
    3 Responses Jun 24, 2013

    I actually don't know

    for sure if I have Sjogren's; my second appt with the rheumy isn't until the 19th. I've had horrible dry mouth, throat, eyes, etc., for a while now (3+yrs). I've had stones in one of my salivary glands twice, and good lord those HURT! My tongue looks like it's been cut all over...
    Notasouthernbelle Notasouthernbelle
    36-40, F
    3 Responses Aug 6, 2014

    My Life With SS

    I was diagnosed with Sjogren's Syndrome about 4 years ago at 28. I feel frustrated by the disease because I can't always do the things I want. It also takes a toll on my financial situation. It's been a struggle, but not as difficult as others. My mother passed away 3 weeks ago...
    Michee22 Michee22
    36-40, F
    2 Responses Sep 10, 2013

    My Issues

    I have shortness of breath heart palpitations and shaking on the inside joint pain muscle spasms headaches the work
    1234sl 1234sl
    41-45, F
    Jul 11, 2013

    Hi Fellow Sjoggies!

    I'm a fifty-something woman living in the Pacific Northwest. Seven years ago my life changed dramatically. I went from being an active, independent, working RN to someone who spends much of her time carefully measuring her energy levels and matching activities to those levels...
    JuliaSchulia JuliaSchulia
    51-55, T
    14 Responses Aug 19, 2010

    Hi i'm 49 and have sjorens ,

    got my diagnosis a few months ago.. I believe this has been going on for years. I'm very fatiqued and it takes over mentally and physically. I find myself on the defense most days. The people in my life don't support me because they don't understand this disease.. I'm constantly...
    lisadonn06 lisadonn06
    51-55, F
    Sep 4, 2015

    Male, 29. Newly Diagnosed With Sjogren's Syndrome

    Starting in mid July of 2012, my girlfriend finally convinced me to go to the doctor's because I was having severe fatigue and itchy eyes. I went to my PCP and they ran many blood tests. The test came back saying that my vitamin D level was extremely low (16, where it is...
    Lspeed1983 Lspeed1983
    26-30, M
    14 Responses Sep 29, 2012


    Hi. I am 36 year old male Dx with sjogrens 7 years ago but symptoms didn't start getting problematic until 2010. My main symptoms are generalized weakness and fatigue, difficulty sleeping, severe muscle aches, joint pain, sensitivity to heat and cold and uncontrolled sweating...
    Jro1414 Jro1414
    36-40, M
    2 Responses Jul 10, 2013

    10 Years With Sjogren's

    I never could wear contacts. I tried for a few years when I was 18 or so but couldn't stand them. Maybe this was the first sign, who knows.I also had these weird episodes in my late teens where I would wake up feeling ON FIRE! with a hot flash, try to walk to the kitchen for a...
    DryChick DryChick
    41-45, F
    1 Response Jun 30, 2012

    Newly Diagnosed

    Was just diagnosed with primary srogrens I am 38 years old with 4 kids scared to death was given prednisone and hydroxychlor I hope it works
    1234sl 1234sl
    41-45, F
    6 Responses Jul 8, 2013

    Hello all, I am 23 yrs old

    and have been diagnosed with Sjogrens Syndrome (SS) for about 6 mo. Ive been feeling the symptoms for about 2 years or so and they have progressively gotten worse over the past two years. I managed to complete college with a BS and am now working at a preschool. It has always...
    Zen130 Zen130
    26-30, F
    1 Response Feb 17, 2014

    Sometimes We Have To Diagnose Ourselves. by 12promises

    Yes, after a couple of years of going to my doc with one symptom after another which she would just throw a script at to treat that one symptom, I decided to do some extensive research both online and in books and I'm almost one hundred percent sure that I have Sjogren's. I...
    sarkev2M sarkev2M
    1 Response Jul 3, 2013

    Is My Diagnosis Correct?

    Hi. I am new to this forum and was wondering if anyone has had joint and back pain as the primary compaint vs. dry eye and dry mouth symptoms.....I saw my ortho for low back pain for years until all my joints started hurting and I developed tendonitis in my arms, knees and hips...
    paytonsmom paytonsmom
    41-45, F
    7 Responses Jan 10, 2013

    A Sjogren's Diagnosis Changes Everything...

    A year and a half ago...all I could think about was the initial fear that came along with my Sjogren's diagnosis. Although grateful to finally have a name for the troubling symptoms that were plaguing my body...I was constantly wondering what this meant for the rest of my life...
    Mode4vie86 Mode4vie86
    10 Responses Apr 8, 2011

    Sporting A Smile!

    On a cold morning while waiting at the school bus stop, I had trouble making fists. I told my Mom when I got home. Of course she thought it was rediculous. I was 14. At 19 years old, I saw a Doctor because I had a lot of random pain in my knees and hips. He said "you are...
    bluejeanjenn bluejeanjenn
    41-45, F
    Sep 11, 2012

    My name is Roe. I am 22

    and after almost 3 years of being sick and having crazy symptoms and a lot of dr apts. I finally was diagnosed with sjogrens. The lip biopsy confirmed it. So relieved to see I am not the only young person to have this.
    dpmalvasi dpmalvasi
    26-30, F
    2 Responses Jan 14, 2014

    I Just Give Up

    Wow I am very frustrated because it seems like the doctors just don't know what they are doing anymore. My old family doctor retired and this was good because although he was a very nice man he was the worst diagnostician ever. The new doctor would not take sick people as...
    krinda5 krinda5
    31-35, F
    7 Responses Jun 18, 2013


    I'v been going threw so much over the last few years. The neck pain, the headaches, the eye pain, dry dry mouth, every few weeks i get really sick throwing up and a sever headach, i would get a numb and tingling sensation on the left side of my body,I have a lump above my...
    pm2468 pm2468
    5 Responses Jun 6, 2010

    I was diagnosed at age 8 with Sjogren's (I am

    now 22 years old) I have never talked to another person with the disease but would love to. As you know if you have this as well, Sjogren's can attack major organs for some people. It went after my kidney's and was so bad I had to undergo chemotherapy and almost required a...
    hollyphoenix92 hollyphoenix92
    22-25, F
    2 Responses Sep 5, 2014

    A Sjoggy Tale

    Hi all, I'm new to this group but so keen to hear from other Sjogrens people. Right now I'm waiting to see a doctor later today - feeling very sorry for myself and a bit frustrated. As yet I haven't been formally diagnosed with Sjogrens, but it's looking more and more like it...
    sjoggy sjoggy
    51-55, F
    1 Response Aug 14, 2012

    Gotta Love Sjogs

    I am a 20 years old and its my third year in college. About 10 months ago at 19, I was diagnosed with Sjogrens. Along with Sjog's I was also diagnosed with Streptococcus of the blood, Pancreatic Enzyme Disorder, IGA disorder, Hypothyroidism, Acute Iron Deficient Anemia,  Rheumy...
    halsethl halsethl
    2 Responses Nov 9, 2011

    Living With Sjogrens

    When I was around 20 yres old I woke up one morning and had my legs covered from feet to the thigh with a purple large splothcy mess it looked like an attack of the measles.  I was diagnosed with Purpura first as the years went on Vasculitis then allergy to the sun...
    susz susz
    41-45, F
    5 Responses Nov 5, 2007

    Sjogren's Syndrome

    It took me a long time to get that diagnosis.  And while it's not the best diagnosis, at least now I know.  While I was dealing with all the joint pain, fatigue, "sandpaper" eyes in the beginning and I felt as horrible as I did; my husband and son thought I...
    dixiegirl38 dixiegirl38
    3 Responses Apr 17, 2009

    Possible Sjorgens Syndrome

    Hi I'm a 23yr old female... it all started 3 months ago I started losing my hair about two weeks later I was so dizzy and just couldn't focus my mouth was so dry I couldn't swallow without water then severe chest pain started ive been in and out the emergency room 7 times usually...
    whodat504 whodat504
    22-25, F
    3 Responses Oct 12, 2012

    I Told The Dr I Had Sjogren'S!

    I had been watching Mystery Diagnosis on TV and what the lady was describing was the exact symptoms I had growing up.I went to my Dr and said I think I have Sjogren's! - she sent me to a rheumatologist. He listen to my story and said you should have been diagnosed decades ago...
    azsbohtkm azsbohtkm
    66-70, F
    1 Response Apr 15, 2013

    Recently Diagnosed

    I am a 54 year old very active woman who began feeling very strange last September. It started with the extremely dry mouth. Started doctoring for it, but of course no one could figure it out, I was starting to feel like a pincushion from all the blood tests. Finally had an...
    hpycampr hpycampr
    1 Response Mar 29, 2013

    My Life

    I'm 14 and in 2007 I was told I had sjogrens syndrome these passed years I had to deal with a lot of stuff due to my disease . I was 2nd chair in band and I had to quit one I got to high school. My mom and dad divorced when I was in 5 th grade . I live with my dad during those...
    jjn131998 jjn131998
    1 Response Nov 4, 2012

    Newly Diagnosed With Ss

    Hi there! I was diagnosed with SS two weeks ago and need a lot of info on how to deal and cope with the situation..My eyes dry, my mouth..both fingers (left and right) plus my both legs swollen.. Now I lost my voice..hoarseness due to chronic coughing ..wake up few time at night...
    sue32618 sue32618
    41-45, F
    2 Responses Oct 17, 2012

    I was diagnosed from my kidney doc

    after a Biopsy that I had sjogrens, but my Rhuemetologist says no ( I don't like him and am changing to a new one) I already have kidney disease they are working at about 1/2. I'm on so many drugs it scares me. The problem is I only feel good on the prednisone and I know it's...
    katsass katsass
    51-55, F
    Jun 27, 2015

    Am I Alone?

    A few years back, I started getting dry mouth and dry eyes. Then I had reflux issues. I went to see a rheumatologist and a gastro specialist. The rheumatologist tested me for Sjogren's Syndrome and Thyroid but results were inconclusive. They showed that I was normal. My gastro...
    Sep 6, 2012

    Life With SS

    This is an autoimmune disease. It is misserable. No cure, really no relief nothing seems to help it. I read on the topic as much as I can. I must say we are a sad group of people. I have the dry eyes, mouth of course but also my lungs ache sometimes my hips. Tired all the time...
    rainbobrite rainbobrite
    41-45, F
    3 Responses Nov 28, 2013

    I Was Releived When I Was Told But What Happens Now?

    For years I had Neuropathy in my feet and one sinus infection after another. My mouth, eyes and skin always seemed very dry, I just excepted this as part of who I am. I recently went through a very bad knee replacement infection followed by an upper respiratory infection that...
    milkman59 milkman59
    56-60, M
    1 Response Apr 20, 2013

    You are miserable....

    ..THANKS. I wanted to share my experience today. Although I posted this under I have Sjogren's, I am not sure what I have. I have been living with an undiagnosed disease for about 5 years. I saw an ophthalmologist today. He tested my tear production and said it was 4 in one eye...
    StillStandingDad StillStandingDad
    36-40, M
    May 15, 2014

    I Have Sjorgrens Syndrome

    ive had SS for 2 years and until this year ive worked around the pain and dryness of the mouth and eyes, but this year ive had large bouts of pain tiredness,experiances of dry mouth which does sometimes effect my speech also bruising to the skin which sometimes look like ive been...
    spirit61 spirit61
    51-55, F
    1 Response Sep 16, 2012

    It Wasn't Just "All In My Head!"

    I was recently dagnosed with Sjogren's syndrome after about 10 years frustration and searching.  Now I finally have an answer.  I'm hoping that the Plaquenil works.
    cherrieannm cherrieannm
    26-30, F
    6 Responses Sep 7, 2009

    Shed No Tears For Me Because I Cant Either

    prior to my sjogrens diagnosis i was a trialthelete ,martial artist, and sought after personal trainer and mother of two married and with an overly active life . known as the energizer bunny among other nicknames and was even called superman once by a doctor conducting a physical...
    trailrunner11763 trailrunner11763
    3 Responses Nov 26, 2012
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