Tons of questions

[Stillinlimbo]

Hi again,
I have a ton of questions. Dry mouth for one. I dont know if this is "dry mouth". My lips are very dry, the back of my throat feels very dry, but, i seem to have plenty of saliva in my mouth? Also, my skin is terribly dry, everywhere, and itchy.
Thoughts?
Thanks
Cathy

[Scottietottie]

Hi Cathy   

Welcome to Sjogren's world.    How is your mouth when you wake up in the morning? Mine is very dry then. That was when I first noticed it although back then I seemed to have saliva the rest of the day. I've always had dry lips though.

I see this is your second post so I won't bombard you with questions until I've read your first! 

I assume you're being tested for possible Sjogren's.

Take care - Scottie 

[beverley]

Cathy,

my dry mouth varies a great deal.  Sometimes the inside of my cheeks shreds and I get ulcers, particularly in the roof of the mouth.  Other times I barely notice it beyond dry lips.  Do you have other symptoms like dry eyes, aching joints or fatigue?

Beverley

[Stillinlimbo]

Hi
And thank you. Yes, bev,i have many symptoms, neurological ones mostly. Docs were thinking MS, but, cant really validate a MS diagnosis. I am just hoping that my visit to the eye dr has now shed some light on this. He also said, my eyes, and I guess he meant the dryness scale or whatever, were a 6. He said, "right eye 6, left eye just as bad as the right" I dont know what that means. All I know is, I have been housebound and somedays bedridden for the past 2 months, and I am sick of this. This happened in March 2008 and last until June 2008, now, here we go again!
Cathy

[lynnmarie219]

Hi Cathy,


I really didn't notice my dry mouth at first, but I did notice that I was having a hard time eating certain dry foods...things would stick in my mouth and I needed to drink something all of the time or I would even choke on the dry food.

When I tried prescription meds (Evoxac and salagen) to give me more saliva...I REALLY noticed a difference. I guess we just get used to how we are and accept it as normal if we don't know any different.....I thought  my dry mouth was normal until I found out what is was like to have "spit" again!     

Have you had any dental problems like cavities or mouth sores? Do you have any digestion problems? These can also be indications of a dry mouth.

[Patze]

Hi Cathy,

I also didn't notice my dry mouth nearly as much as my hair falling out, gaining weight, blah, blah, blah of a slowing thyroid.  After that had been "controlled", I was still having problems.  My eyes where so dry that I had to quit driving as I couldn't see worth a darn with my prescription glasses on.  But for me, like a few others here, my eye dryness is because the oil glands in my eye lash areas are all clogged up - so my tears just evaporate quickly, too quickly. 

My mouth gets dry if I don't drink a lot of fluids, and it can get dry fast.  I don't know about you, but I love bread products with a passion, but I have to limit how much I eat of it because it will get caught in my throat, and it can be a pain to try to "unclog".  My lips were almost as bad as the eyes, almost.   There were very painful, and dry - oh so dry.  You will never catch me without lip balm of some type on, as they go dry very fast.  I've been lucky as the rheumy has finally gotten the correct level of meds that my lips are no longer the painful, cracking/bleeding mess they once were.

You didn't mention if you've been tested for SJS?  If not, have you been referred to a rheumy?

Take care,

Patze

[Stillinlimbo]

Patze,
I have had alot of labs, ANA and those tests, all normal. I was sent to a rheumy last year, he said I have chronic fatigue syndrome....
I do also get mouth sores, on the inside of my cheeks, sore spots on the roof of my mouth, and yes, eating dry foods sometimes feels like there is a wad of cement in my mouth that needs to be watered down. I havent been tested for Sjogrens yet, but, after my eye doc visit, I am up bright and early this morning waiting for the sun to rise so I can call my GP asap and tell him of these findings.
I have been out of work due to this latest "flare"  for 2 months now. This also happened last year, I was out of work for 6 months! So, based on this, as well as my sx, they think MS, and this is another relapse. So, does Sjorgrens wax and wane? Is anyone so bad they have stopped working and are on SS?
Cathy

[auntbea]

Hi again,
I have a ton of questions. Dry mouth for one. I dont know if this is "dry mouth". My lips are very dry, the back of my throat feels very dry, but, i seem to have plenty of saliva in my mouth? Also, my skin is terribly dry, everywhere, and itchy.
Thoughts?
Thanks
Cathy

[lynnmarie219]

Hi Cathy,

In answer to a couple of your questions.....yes Sjogrens symptoms can wax and wane.....that's why it is so difficult to plan our days out ahead of time as we never know how we will feel from day to day...because our symptoms change faster that we can keep track of sometimes! 

There are both good days and not so good days...at times our bodies flare which means that all of our symptoms seem to come to a head...but they are temporary.

As far as working...that varies as well too. I still work full time as do many here...some can only work part time and others have had to quit their jobs due to sjogrens and other health issues that go hand in hand! This is also very individual and there is no way of knowing what will happen to any of us.

My best advice to you and to all of us is to live one day at a time and sometimes even one hour at a time (thats what I have to do at least...lol). We all learn what our bodies can handle with time and experience and what works best for each of us during the good times as well as the bad...its an ongoing learning experience...but life does goes on no matter what type of adjustments we MAY have to make!

If you have any other questions...please ask...its how we all learn from each other!