New to this forum. I have Sjogren's

[momomom]

I was diagnosed this week. I have been sick for what seems my whole life. My symptoms became more obviously Sjogren's in the last 2 tears. i am 29 and a mom to 3 kids. I am now on Plaq. and pred. I have so many questions. All i can ever find is definitions. I want to know what others experiences with this are like. I feel like crap and i look like crap. Will this medicine really help? How soon? I really wish my hair would grow (It hasn't grown in 5 years and looks like it's burnt). I wish my skin didn't look so discolored. Will the medicine improve this at all? I looked young for my age 5 years ago and now I look 10 years older than my age. I have HORRIBLE short term memory loss (brain fog). I hurt all over. I am soooooooo tired but i can't sleep. My eyes drive me crazy. My lips are perma-chapped. I wish i knew what it was like to feel normal and to look normal. Anybody else have the probs with hair and the skin discoloration? Did the meds help? Share all you can please. this is all new to me. 

[Bucky]

Hi momomom - welcome to your new Sjogren's family.   

There is a ton of information here on the forum.  If there is a specific topic you are interested in, if you put it in the "Search" box to the top left of this page it will take you to previous posts on that subject.

It must be difficult dealing with all the "gifts" Sjogren's brings with it and raising three children. 

You will find little tricks of this journey that will help make life more bearable.  You will need to pamper yourself!  Lotions, potions, eye drops and medicines will be your companions.  Yes, medicine does help - however, some take six months or more before you feel their effect.  Of course, everyone is different - some get relief sooner, some don't notice any difference.  It's so individual.

If you haven't seen an Ophthalmologist, I would suggest you do.  Over the counter drops help the eyes, but some times you need plugs or prescription eyedrops.  Keep a close watch on your dental hygiene too - lack of saliva can do a number on your teeth.

I'm sure others will be along to offer their advice. 

There are books out there too that explain Sjogren's really well.  You can find some of them listed under the Books heading at the top of this page.

Take care.

Bucky

[Patze]

Hi momomom,

Let me also welcome you to the SJS World!  And like Bucky has mentioned, please do look around as there are tons of topics that you just might find interesting!  And let's not even mention the oodles of wonderful members here too!

Take care of your self -

Patze

[Scottietottie]

Hi Momomom 

Welcome to Sjogren's world. The diagnoses is always a shock to the system because we want to go to a doc and get told we;re going to be cured. Right? It takes a bit of time to get used to the dx.
It's NOT new to you though. You've been coping with it for a long time. Now you have a label - but nothing has actually changed except that you can tell people what's up - docs will take you more seriously and everything you have been feeling has been validated.

It will still take a while to come to terms with it but there is life after SjS!! Honest!

I hope you find the forum useful.

Take care - Scottie 

[meow]

Hi! I am new, too. After years of thyroid issues, and what they thought was Chronic Fatigue, they finally did  a dozen tests and I tested positive for one of the SS antibodies. I don't know which one. My appointment is next week and I will be getting a copy of all my labwork. The ANA antibodies were detected a year ago, and I tested positive for Hashimotos--officially, after 25 years of thyroid meds. But my symptoms would not go away, no matter what the lab work said--  fatigue, dry skin/hair/nails, mild aches--all thyroid stuff. I thought the dry eyes were because of the single-digit humidity I live in--go figure!

Anyway, I DO have something that helped my hair and nails. A lot. It's Biotin, 1000 mgs a day. My hair is much improved since I started taking it in September, after years of slow growth and skinny weak hairs. I know that we are cautious about recommending supplements, but this is a B vitamin, not some "miracle concoction."
I also use anti-breakage shampoo, and that helps.

[lynnmarie219]

Hi momomom and meow.....and Welcome to Sjogrens World to both of you!

Please take your time and read through the posts here that interest you...there is so much information here on so many topics and if you cant find what you need go ahead and ask questions and someone will always be around to try and help you. Take your time....you wont learn it all in one day...its a process and we continue to learn each and every day with all of the input from each and every member who comes here to post and chat!   

Welcome!

[saranski]

You found the right place!!! I was just diagnosed in very early January.  I thought it would be a relief to have a name to put to all my symptoms, but it really threw me for a loop.  I was down and out for about a month until my sisters kidnapped me for a weekend and showed me that I am still the same person!!!! Life goes on.  I still have my days that i struggle with knowing there is no cure, but i now know to take each day one at a time.  I have 4 kids, 5 including the hubby, and can empathize with you.  I hope you find this site useful, I can honestly say, I couldn't do without it.  It's a haven for me.  Please visit often, even if it is to just read the other posts, or complain and vent.

[queenoptimism]

Hello,

I am also new to this forum.  It was a highly recommended resource and I'm quickly finding out what a great place this is.  I've been largely undiagnosed for years and did have a mild SjS Dx until this week when a Neurologist specializing in Neuroimmunology made it clear that he considers me to have SjS with somewhat rare CNS components.  I have a Gallium Scan scheduled and got a ton of blood work and figure i will get a firm SjS dx soon (and possibly more).

Thank you all for sharing yourselves on this board.  It's quite helpful.  Even if I am a bit in denial of the impact SjS is having on me.  I work FT and it is becoming more and more challenging.  I want to pass off brain fog as something I can control...

Anyway, I hope you will accept me into your group and am appreicative for this terrific resource.

Best,
-Q

[lynnmarie219]

Hi Q,

Welcome to Sjogrens World! I'm glad to hear that you have already found this pace to be helpful and safe. It is somewhere to come to when you want information, to laugh, to cry or vent, and of course to make new friends who really do "get it".

Please take all the time you need to read through the posts and ask any questions you  need to...everyone is very friendly and willing to help out whenever they can so jump on in whenever and wherever you feel comfortable!

[Patze]

Hi Q,

Let me also welcome you to the SJS World and family!  I'm sorry to meet you this way, but I'm glad that you found us.  Please do look around as there are tons of topics that you just might find interesting, and as you already see, gaggles of really great members too!

Like Lynnmarie said, do take your time, and don't be shy about asking a question if you can't find what you're looking for.

Again, welcome, and I hope that I get to chat with you soon!

Take care of yourself -

Patze

[beautifulkrissy026]

Well I can't say much about hair and nails because I was on Prenatal vitamins for a long time and of course that helps. But I know what you mean about chapped lips, I have Carmex stashed in every nook and craney. I just joined today and have already found this helpful. It's nice to know your not alone. I just recently had plugs put in my eyes and started Restasis which seems to be helping. Can't say much about the Plaquenil I've only been on it 6 months. I to hurt all over and can't sleep. The last time I slept through the night was about 7 years ago. I remember it quite well because that had never happened before. I wish I could say I have answers for both of us maybe this website will help us with that.