Any females in their 20's that have been diagnosed?

[tmarie0183]

I was just wondering if there are any females in their 20's that have been newly diagnosed.  I just turned 26 and I was diagnosed a couple of months ago.  I know that the norm is to get sjogrens in your 40's/50's, but looking back I can remember symptoms for quite a few years now.  I have always been tired for as long as I can remember, but after the birth of my first son at the age of 18 I remember being tired at a whole new level. (I thought it was due to the new baby or baby blues)  I remember having the doctor check me to see if I was anemic because I just felt so fatigued on a completely different level.  I also remember my feet always hurting after that pregnancy.  I am also RH-negative and I wonder if that correlates at all with sjogrens?  My eyes are always red and dry, but I just attributed that to wearing contacts for so many years.  Since high school I remember always carrying a water bottle around with me because my mouth was always so dry.  Last year my tooth broke while I was eating a carrot and I thought that was completely random because I take good care of my teeth.  Now I know that it was due to my sjogrens.  I always thought it was normal to wake up in the morning with my tongue stuck to my mouth! Ha now I know.  Anyways sorry for rambling, but I just wanted to know if any other young people like me are going through this?

[jonnell]

Hi and welcome to the forum.  I am 38 years old and I have a 4 year old little girl with sjogrens.  The only reason she has a diagnoses is because I demanded she have a ana test because I thought she had Lupus.  I truely believe that young women have sjs they just arent diagnosed till they are older.         Jonnell and Jenna

[Chickpea]

Hi tmarie

Welcome to SjS World!  There definitely are other women in their 20s with SjS so you're not alone.  I'm sure some of them will be along shortly to say welcome and share their stories with you.  

Like many other women in their 40s (there ARE lots of us here!) I've had symptoms for years.  I would have been here in my 20s if I'd been diagnosed and if SjS World had existed way back then.  Some people would have been here even earlier as, like you say, symptoms can develop really young.  Jonnell's said 'hello' so you can see we're even 'home' to a 4 year old and her mum.

I hope you've found a good rheumy and you're getting started with treatment.  Let us know how things go.

Take care - Chickpea

[dbab]

Hi tmarie,

I'm 33 but have lived with this since I was 28.  I actually didn't know what was wrong with me until 3 years ago and I still don't have a firm diagnosis but my doc believes I have Lupus/Sjogren's.  Dryness was not my first symptom so I never noticed it was a problem.  That is actually milder than a lot of my other symptoms.  And even with that sometimes you don't realize that what you are going through is actually not normal.  You just figure that everyone feels the way you do.  I actually never went to see a doc until 3 years ago when I started realizing everyone my age had more energy than me.  My husband started thinking that something was really wrong with me and finally saying something.  And me finally realizing that dragging yourself around everyday is just not normal.

[ErinG]

Hi tmarie,

I'm 28 and I was just diagnosed with primary Sjogren's.  I have had dry eye symptoms since I was 20, and the dry mouth developed in the last 5-6 years.  I also have kidney involvement (interstitial nephritis, renal tubular acidosis, bilateral nephrocalcinosis, and stage 3 chronic kidney disease).  It's really frustrating that all this is happening, especially since I'm young.  I'm not married yet and I would like to have kids someday, but now I don't know if I'll be healthy enough when I'm ready.  Most of the time I don't feel all that bad, or maybe it only seems that way because I've gotten so used to feeling like crap. 

I hope it gets better for all of us!

[kcoffiner]

Hi

I am 27 diagnosed when I was 25 but had minor symptoms for yrs. There is a bunch of us young woman and men on the board that are more than willing to chat.

Hope you get settled in.

Best wishes,
K

[tmarie0183]

Thanks for responding; now I don't feel so alone  .  I am sorry to hear that a 4 year old little girl has to suffer with this disease.  I work as a pediatric nurse in an urgent care and it just breaks my heart to see the little ones with chronic illnesses.  She's lucky to have a persistent mother:)  I too have always felt like I never had enough energy.  I always felt so guilty because I have two sons (7 & 2), and I always felt like I was a lazy mom who never wanted to do anything.  I am finally starting to get back to my old self and I am trying to make up for all the lost time with them.  I'm taking it slow for fear that I will push myself too far.  My whole life my friends and family always made fun of me because I was always going to bed early or never wanted to stay out too late and have therefore been dubbed the "old lady".  I'm just glad that I finally have answers and know what's wrong with me.  Has anyone on here had Sjogrens for a long time and not have their symptoms worsen??  I still am able to wear contacts and am hoping I can continue this ( I hate glasses).  Thansk for listening guys:)

[babycakes]

hi there

i am a 37 year old mum of one (19 months old and adorable) diagnosed with primary sjogrens last year although i know for a fact i have had symptoms since my early 20's.  Like you i just thought i was lazy because i always felt tired and used to sleep excessively. I also had a constant dry mouth and thrush persistantly.  My joints ached and i would sweat profusely at the slightest exersion.  After the birth of my son i had an infection following a c section and became ill.  the dr ordered an ana test and found i was postivie for ssa antibodies and the rest is history.  since being on plaquinil i can look after my little boy now as i feel much better.  It is a struggle and i have my bad days but i do learn to listen to my body and try and get rest when i can.  From what i have heard i think lots of women can recall having symptoms in their twenties but arent diagnosed until much later.  I have joined a uk support group and have found this through talking to other women.  Are you on plaquinil or any other drugs.  What are your main symptoms??

take care annie

[Wynter]

I am 39 and know I have had since probably 33, maybe earlier. Since I was 35, I have complained I feel more tired than normal and seem to poop out easy. Last year, after a lot of stress, the symptoms became much more noticeable. I have primary sjogren's with most of the classic symptoms and no organ involvement. What's usual about me is that I have nerve involvement in mouth and can't figure it  out.

[pghgirl]

i'm 24 and was diagnosed  about 18 months ago.  you are definitely not alone.

[lkw_dvm2010]

I was diagnosed at 29 though had been having significant symptoms for the past at least 10 years.  It has been a difficult road.  The plaquinil helps though since I am under a lot of stress it doesn't make as big of a difference as I would like.  I am a third year veterinary student so my life is crazy to say the least.  I believe I am through the most difficult/stressing portion of my education so hopefully when I get back to the US my symptoms will be at least some better.  Anyway, what I have found helps me is counseling, friends, my dog and not stressing about the small stuff.  Lord knows that is easier said than done.  I used to worry about other people in my life more than myself.  Well no more I have to be my first priority.  In the past few years I have learned that you have to do the best u can with what u got.  Hope things go well for u

[ia]

I was 17 when I started having symptoms, was diagnosed at 23. So, no you're not alone How was your pregnancies, did your having Sjogrens affect them at all?

[tmarie0183]

HEy
I have been on plaquenil since I was diagnosed; about 3 months now.  I am also on effexor now for about a month (one neuro thought everything was due to anxiety) I have been doing pretty good lately so don't know if it's due to the effexor or if the plaquenil finally kicked in.  Regardless I'm going to stay on both because I'm scared to go back to feeling like I did before.  My first symptoms that prompted me to go to the doctor were numbness in my left leg that spread to my stomach and face.  I was very dizzy and fatigued and had 'brain fog".  That's when I started freaking out thinking that I had MS (I work on a neuro unit and urgent care so I have dealt with MS for years.  That's when I had a bunch of tests and my SSA came back positive.  I never really paid attention to the dry eye/mouth.  Always thought it was due to contacts/allergies/and my love for bottled water:)  Now I;m doing pretty good, just the tolerable dryness and my left leg still goes numb/weak.  Now that we're getting out of the cold weather my hands/feet are better.  My first pregnancy was good (minus horrific nausea and heartburn)  I did notice after my older son was born I started having problems with my feet, and I was insanely exhausted after having him, but always attributed that to having a newborn/baby blues.  When I was pregnant with my second one (2 years ago) I was so tired I made them continually check my blood to see if I was anemic.  I believe my sjogrens was there but very minimal.  I know that recent stress is what caused it to come out full blown, so now I am nervous to ever get pregnant again d/t the risk of heart block in the babies.  Plus I don't think I could emotionally or physically handle another child anyways.  I will continue to keep my faith in God and let him lead my life.  Hopefully it just doesn't get worse:)

[olivia15]

Hi Marie,

I'm 23 and was just diagnosed with primary Sjogren's a few months ago, although I've had symptoms since I was about 16 yrs old..

~Olivia

[tmarie0183]

What were your symptoms?