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[artsyamerican]

I am so glad I found this board! Reading everyone elses posts makes me understand this disease a little better. I recently went out on disability and am feeling a little depressed.  I miss being a teacher.  I miss being productive.  I am now lucky to go 3 hours without needing a nap!  The fatigue, the dry mouth, the joint pain, and headaches are making my life miserable....but alas...I know it could be worse!  Have any of you ever had your mouth so dry that you notice your tongue is stuck to the roof of your mouth? How about talking difficulties? My throat is always clogged!!! Yuk.  Anyway...I'll stop griping now.  Looking forward to any responses.

[Patze]

Hi Artsyamerican,

Let me welcome you to the SJS World and family!  Please do look around the board as you'll finds scads of topics and oodles of information by using the search engine located in the upper right hand side of this page.

I sure do understand waking up and peeling your tongue off of the roof of the mouth or my lips off of the teeth...boy, the first three or four times is scary but it gets easier the more it occurs (I also use a CPAP machine and it's not that unusual to have that kind of problem with that therapy), so its a double edge kind of problem.  Whew, there are some days that I wish I could soak my tongue at night so I don't have to worry about the sticking problem...ack!!!

Again, welcome and I hope to see you around the board.

Take care of yourself -

Patze

[Joe S.]

Welcome to the forum. We should try to keep score of professions. There is a lot of good information on this forum.

[anita]

Hi and welcome!!

For some the dry mouth is worse then others.  Have you considered asking your doctor about Evoxac?  Some here have had good results with that or Salagen.

[KellyG999]

Welcome!

Yes, I wake up at night Sooooo dry I can't swallow or hardly breathe. For a while my whole mouth and throat would dry out then swell up at work. Couldnt talk or swallow. PANIC!!

Recently I have done better and am back at work thatnks to my PCP and a whole regimine of meds plus supplements.

Fatigue is something I can't seem to beat, but I keep trying.

Take care and keep posting.

KellyG

[susanep]

Welcome to the board.  Many of us have experienced your symptoms. The fatigue is like no other isn't it?

I had to leave teaching in 2010.  I still have moments that will creep up on me, and feel a bit sad.

Mostly though,  I am  grateful to be home where I can rest as I need to. I am so thankful I do not have to put up with the stress any more.

susanep 

[mshistory]

Welcome to the forum!

The fatigue is my worst symptom right now - I teach part-time currently plus have two very young children, so it does make daily life difficult. The Plaquenil has helped with my joint pain, although it still flares up, and I'm Rx strength naproxen as well right now for pleurisy (which is helping, thankfully!) so SjS does seem to throw one thing after another at us.

[Pisces24]

I don't have the tongue sticking but i can't eat a sandwich without it sticking like paste all in my mouth.  I have to keep drinking to get it wet enough so I can chew it and get it down. Other regular foods are not so bad but they have more moisture in them I think.

Teachers are so active and "on the go", I can see where that is a big change for you.
Not sure if we still do but we used to have a "hotline" in town that was staffed by teachers for kids to call with homework questions. Not sure if I was paid or not. And of course we have the Sullivan's learning centers around here too. Not sure if you'd be interested in any of those.

Hopefully you can find something you enjoy that can be done in "short bursts". I am working on tracing my family tree and find that interesting. I can put as much or little time as I want.
Welcome to the Group!

[Cricket]

Welcome to our family!

Yes, I have that saliva problem, I take Evoxac and it is a life saver.  You should ask your Dr. For some and give it a try, no sense suffering more than we have to.

[Cheryl]

Artsy,
Welcome to our site!  You have already received some good advice, so I'll just say it's nice to meet you.
Cheryl

[quietdynamics]

Hello Artsy,
I worked with students too and I really miss them. I was approved for disability ( and I cried, because there was no hearing? and I wondered if/is my condition worse than I thought?)  I experienced a grieving time for the lose of that part of my life.

For dry mouth I put a crock pot near my bed. I wake up and it feels like lizard tongue...lol.  Maybe while sleeping we are breathing through our mouth?
I use sugar free Ricola like lozenges and 1/2 of a stick of sugar free gum to create saliva. Your doctor can prescribe a  med for dryness.
Dry skin I use regular olive oil as a moisturizer....absorbs right into the skin and has natural antioxidants.

I am having headaches now (today is day 13) 3 advils helped, to break the pain cycle, then down to two and drinking a lot of water and gatorade. The Neurologist I saw yesterday suggested extra strength Excedrin. 

Start keeping a diary of what you are feeling, doing, etc., to learn your triggers. Include foods and what makes you feel better. If you can do it on a laptop and then condense it for your Dr. it will help.

Try to stay on your old work schedule (if you need a nap take one...but be careful not to interrupt a normal sleep cycle...it is really hard to correct) Even though we are supposed to stay out of the sun. It is important to "shake your booty" and get some fresh air and exercise. A walk according to your ability is good.  Pick a day to go to the library and try to go the same day every week (some have yoga classes, knitting, reading groups). It is very easy and I think normal to isolate when  not feeling well, and that becomes a depressing rut.

[Meld256]

Hi Amy (artsyamerican),

That a good nickname! Let me welcome you to Sjogren's World!    We're glad you found us, and hope you'll find the site as supportive and helpful as I and many others do.

It sounds like you've already gotten good advice.  I think we all understand the feeling of loss with no longer working, and how to feel productive in our "new lives."  It can be a process and journey to find your way.

I can let you know there are many caring people here who understand and will encourage and support you. Please keep posting; we look forward to hearing more from you. 
Take care,
Melinda

[Duchess]

Hello and Welcome!!

Yes, I too have awakened to find that I have to "un-glue" my tongue from the roof of my mouth. My lips are stuck to my teeth etc. There are times when I feel the urge to swallow and there is nothing to swallow. Many times I have to be careful opening my eyes because they are "glued" together. I got an eye injury once for opening them too fast.

I, too, had to give up working. That was about a year ago. I am still grieving that. I have applied for disability.  How long did you have to wait to get yours?

I am glad you found us. You have a lot of good information to share. Your "teaching" comes through the words you have written. You are very comforting.  Thank-you


Duchess

[sissyjane]

Hello! Welcome! ...and Happy Thanksgiving! I have dryness, but the Plaquinel helped. My worse symtom right now is the joint pain especially in my hands. I have pain meds, but don't want to take them, and the Celebrex doesn't seem to do a thing.

Anyway--enough about me... You will find info. and people who understand here.

[gold55]

Hi sissyjane,
I have a friend who has terrible hand pain and I have hand issues too.........she tried everything out there and it seems that she and I find relief with over the counter ibuprofen.  Just 200 mgs begins to unstiffen my fingers and she tried Celebrex and other Rx's to find over the counter ibuprofen helped her hands!  Hope you find some relief.  I've got hand and foot pain which are the two parts of my body I use the most