New to Forum

[cmnk12]

Hi
New to this forum and wanted to say hello. Have read many posts and feel better knowing that I am not alone in this disease. I was dx 2 years ago after they ruled out MS. It has been a journey that is still not over and I still feel so frustrated by my flares. I wonder some days if I ever will have my life back...you know ,the person I used to be. I am guessing,NO.
  I have so many questions for you veterans,can I ask them in a list ?Like does the heat make you weak and shakey? Do you get episodes of tingling and spasm randomly at night for days at a time? Fatigue like someone sucked the life out of you? Forgetting words midsentence/even whole events of my life...yikes. And the episodes of nausea.Anyone with shortness of breath lasting 2 weeks only(no resp infection with it).joint pain,dry eyes and mouth are the given.haha....but seriously...My legs and arms are weak right now mildly...do you guys get that too? I am just tired. I take prednisone and imuran...any advice is appreciated.
  Sorry for the rant.
  C

[Chickpea]

Hi C

Welcome to SjS World!  It's good to meet you and hear a little about your journey here.  I have to say that this is really not a rant at all!  It sounds as though you're going through a really rough time at the moment.  You'll see from the other posts here that we come and share both the good and the bad times, sometimes we're feeling really low and sometimes we're cross, we have joys and good news which we share with our new friends too.  So please don't apologise!

You're right to say that this is a journey that is still not over, and will probably be your life's journey now.  Like you I was initially diagnosed with MS but things didn't quite fit.  If you read the biogs on the staff page you'll see that's the situation for quite a few of us including the two wonderful women who started this site.

Your questions are generally covered by discussions on the Discussion Board.  Just put the topic in the search box.  Here are a few thoughts:

Heat - most Sjoggies find the heat hard to deal with, especially direct sunlight.  For many of us the meds we're on mean we need to be extra careful in the sun.

Tingling and spasms - yes, yes but at any time of day and night.  Lots of us get night cramps especially in legs.  Look up all discussions of cns (central nervous system) issues as well as cramps and spasms.

Fatigue - for many people this is the most debilitating part of SjS.  There is a discussion thread about how to describe 'our' sort of fatigue.  'Like walking through molasses' seemed to fit for most.

Memory issues/brain fog - probably next most common issue which can be really scary, and makes continuing with work really challenging.  Families can also find this a hard one to cope with.

Nausea - I've just had nearly 4 months of this combined with digestive issues but it's clearing a little now.  Seems to be cns related.  Some meds can make people more nauseous, especially Plaquenil in the first few weeks.

Shortness of breath - lots of people get this and worry about heart/lung issues but it seems to be a SjS 'gift'.

Yes, joint pain, dry eyes and dry mouth are a given as you say!

Weak arms and legs - common for those of us with cns issues, and also because of the SjS-type arthritis.  Do you get any physiotherapy for this?  Or do you use a stick, walker or wheelchair?  I find leg and wrist braces help a lot, partly because I get sensory feedback from them which prevents me falling.

How are you getting on with Prednisolone and Imuran?  Have you been offered Plaquenil?  It's a standard treatment for SjS and works wonders for many people, and keeps things steady for most.

Visit often and tell us how things are going.

Thinking of you - Chickpea

[lynnmarie219]

Hi C and welcome to Sjogrens World!


I don't see your post as a rant either.....and as we always say here anyway...if it makes you feel better...rant and vent away! That is part of the reason for this board.....to get information, support and friendship so you don't have to feel alone anymore. Its nice to know that there are others who completely understand and wont judge you! 

Chickpea has done a wonderful job directing you on to topics that will not only help to answer your questions, but will help you to feel like you are truly being validated with how you feel. I agree....fatigue and brain fog are two of the of the major complaints here and if you put those words in the search box up above...you will find many threads that relate to those concerns.   

Take your time reading the posts and jump on in whenever you feel comfortable doing so.....and welcome to the family!

[Pisces24]

Welcome to the Group!
I am a sorta newbie too having been diagnosed in March 2009. I think I've really had this much earlier, probably even earlier than 2002 when my gp started "the ball rolling" to find out why my bloodwork was so off. But I hear it is typical of SJS to take years to get a firm diagnosis.   Problem is with SJS, so many of the symptoms can be symptoms of other things too. The rheumy I have told me it is like having a bunch of puzzle pieces and you fit them together to get the right picture/diagnosis. I got tested for SJS from an immunologist who thought it was a good idea due to my teeth cavity issues and past swollen partroid gland. Evidentially my blood test can up very high for SJS.  2005 my diagnosis was indolent lymphoma which my immunologist thinks was a mis-diagnosis.

So far I am lucky as I don't have the "bad" symptoms that I hear so much about in this forum. BUT SJS is progressive so don't know what the future holds as do 99.999% of the folks here.  I've just had since at least 2002  1) odd blood work - white, lymphacides, sed and ?  2) big teeth cavity problem - up too 2002 had maybe 5 cavities my whole life - now I've lost count and honestly don't want to count them!   3) frequent easily gotten sinus/throat infections that require 2 rounds of the "good stuff". But sinus flushing has helped.  4) very dry lower lip 5) allergy feeling eyes which rheumy said was SJS flares not allergy.  6) the last maybe 4 months some mild faigue. I say mild as I get tired in the mornings at times at work and chew gum which helps. and some Sundays I find myself sleeping in until 10am - these are things I have never ever done before.

I am ok with the SJS diagnosis after going through 2 years of emotional H with drs and being initially diagnosed with lymphoma. I went through the "stages of grief" emotions you go through with this type of diagnosis looong ago. I did take a pre-emptive strike and saw an attorney to find out about what my "work rights"  are if I do get disabled by this. I am 52 and been in the work place way too long to now watch out for myself plus I was a caretaker to my folks prior to their passing.

This is a great forum and you'll like the folks here and in the chat.

[Patze]

Hi cmnk12,

Let me also welcome you to the SJS World!  It's a great place to be and I'm glad that you've found us!!!  Please look around the board as I'm sure that you'll find some really great information that can help you.

I see that you've been given some wonderful advice and there's not much that I can say.  But I do have a question, have you had your thyroid tested lately?  Problems with the thyroid can also cause some of the symptoms that you speak of.  Can you seen your primary soon?  Will he refer you to an endo maybe?

Again, welcome and I hope to chat with you soon.

Take care -

Patze

[Poochie]

Hello C,

Welcome to Sjogren's World.  Where you can rant, rage, cry, spit, c****e (curse) within reason with *****'s, , stamp your feet and scream all you want.

When you're here, you're never alone!

In answer to your questions, speaking from my own personal situation, YES TO ALL OF THE ABOVE.  After you have been here for a while, you will come to know who "Fred" is when I rant about him. (My neuropathy that makes me stagger, fall, dance left and right and just plain angry).  My hubby named it after I said bad words whenever I lost my balance.  He said to think of it as learning new dance steps and my teacher was Fred Astaire.  Ha! Ha!  I should be so lucky.  So now I just yell at "Fred!" when I lose my balance.  I reserve s**t for when I fall down.

Anyway, please know that you are not alone in any of your symptoms.  There are quite a few of us going through the same thing.  Some of us are the recipients of just about everything SJS can throw at us.  Others seem to know how to duck quicker.

In any situation, it just means we have to learn how to cope or figure a way around it.  With me, I try to use humor.  If I didn't joke about this disease, I'm afraid I would have been locked away in a padded room, long, long ago.  But I just refuse to let it win.  That doesn't mean I don't have my pity parties, or cry myself to sleep sometimes, but I absolutely REFUSE to let this beat me.  


I'm so glad you found us.  Come often and rant all you want.

Hugs, Pooh

[Bernice]

Hi CMNK12,

Welcome! Welcome! It's funny I sometimes feel like the doorman at a vampire's mansion welcoming soon to be victims that have lost their way and happened upon their soon to be nightmare! But at this point if you are here, I guess you've already been bit, huh? You've already encountered Master Vampire SJS

SO WELCOME TO THE PACK!

Yes! I have all that you listed and some!

I joke about the effect of SJS, but the truth is you will manage to live a productive life, though you may have at some point to manage your life around you body's need. The main thing is not to panic every time you feel pains or give up on living a productive life! Make sure you have GOOD doctors! And keep a sense of humor about life! Know that you may NOT get all the symptoms that others get, so don't freak out when you learn of other's symptoms that you have not developed, you may NEVER!

Blessings!
Bernice

[colleen]

Hi C,

Welcome I was diagnosed with Sjogrens in Oct, 2008.  I felt like I was all alone until I came accross this very informative site with such understanding friends.

Feel free to vent any time....

Hugs Colleen

[Patze]

Hey Colleen,

We are a bit of a pack, aren't we?  But we're one heck of a lot of fun!  

And as Bernice says, welcome to the pack!


Patze

[cmnk12]

Thanks to everyone for the responses. Some days I just feel so crazy. Anyway ,yes, my thyroid is well under control. It gets checked every 6 months.(for last 12 years!)I am off to work with my smile on pretending that all is well/hope you guys have a great day.
c

[Scottietottie]

Hi C 

I've been away but I'm back. Just wanted to add my welcome to the others!

Take care - Scottie 

[kimbo]

Hi C

Me too.....  Welcome and all I could possibly say has been said.

I am enjoy all the new ones who come and join in so comfortably. Many great contributions, and bringing great sense of humors our best combative medicine.

I hope you find many answers and enjoy all the compasionate encouragements from our wonderful group of sjoggies.

Blessings kimbo