Is this how it is or is something else going on?

[annabelle]

I have not been officially diagnosed with Sjogren's, but think I am on the path to dx.  Does it feel like this to anyone else?
I wake up in the morning  very achy, eyes hard to open and painful, both wrists swollen, drag myself downstairs, 15 minutes later I have to go back to bed because of fatigue and pain, little short of breath (my lungs have been checked monthly and are fine).  I take a pain killer and then can begin to function.  I actually dread waking up in the morning because it takes so much to start my day.  Mornings are just the worst.  I do have difficulty getting to sleep at night,  because my mouth is parched.  My tongue feels rough like a cat's tongue.   I drink water, use biotene spray, then have to go to the bathroom several times because of all the water I have drank.  I usually end up taking a sleeping pill.  So my question actually is:  is this typical of Sjogren's, or Lupus, or is it all in my head (sometimes I just feel like a malingerer).

[A66eyroad]

Poor Annabelle! You're not a malingerer (Great word! Think I'll use it as my word of the day!) and it is NOT in your head, my friend! You're a Sjoggie!

I also dread waking up in the morning -- I always wake up feeling hung over. Bad hung over. Hit by a bus and left for dead hung over. Some days are worse than others, of course. Usually I'm much better after my shower.

I don't have all those other issues you're talking about -- only the dry mouth. Joe S. on this board has suggested that, instead of drinking a big gulp of water whenever we're dry, we should sip and swish before swallowing. That has helped my night-time travels a whole lot. I've also been known to use (Yikes! Brain fog! Can't remember the name of it! Somebody else please?) a lozenge-type thing that sticks to the roof of my mouth and tastes slightly lemony. It dissolves slowly during the night and leaves an icky glob in the morning (TMI) but it's worth it (sometimes).

I have Biotene spray, but yuck! And it doesn't really last any longer than the same amount of water swished around.

Hope this rambling answer helps.   

[Scottietottie]

Hi 

It is NOT all in your head. We can't diagnose in here because we are not doctors but your symptoms certainly sound familiar. Hopefully you've found a good medical team as you say you are on your way to a dx.

I always find mornings the worst too.

Take care - Scottie 

[KellyG999]

I don't know if this helps but I wake up EXACTLY as you described. ( most mornings, anyway)

I feel bad that I need pain medicine to get moving, but otherwise I don't think I could go to work or do anything but stay in bed.

I think it's the furnace causing the extra dryness, but I keep waking up so dry it feels like I can't breathe or swallow at all. Then anxiety!!!

Good luck, you aren't a hypochondriac. You are a person dealing with a very real disease. Let us know how we can help.

Hugs,
KellyG

[Madison Granny]

Most people with SJS have allot of trouble getting around in the morning.  I really don't function well until after 10:00 am.  I'm lucky in that I don't work so I can take all the time I need to get around.  I think allot of people think it's all in our heads even some doctors do.  I met my share of doctors who do.  It took me at least 9 years to get one to test my ANA.  All because of my knuckle swelling and gettins stiff and my casual mention of cavities.

[SjoDry]

Wow..there are actually other people that feel like I do every morning. It is so nice to have discovered this site & see that you all share many of the same symptoms. I mean nice from the validation perspective (as in No, I am not crazy...this is not in my head).  Someone else said it well..it is like a hangover EVERY day. I now have eye gel drops in my purse, at home & at work. I have Biotene everywhere; gum & never move without a drink in my hand or next to me. Now if I can just get a couch in my office for when my head is about to drop on my desk 

[KatieB]

  What I hate is being so uncomfortable all the time. My husband will say, "Oh, I hate to get up, I'm so comfortable" and I bite my tongue so as not to snarl at him. Must be nice buddy!   He's great, can't blame him, but I would so love to feel that way instead of "Oh I don't want to get up because I feel exhausted and ache so much."  Hungover and dehydrated is the perfect description!
  Actually, though, my rheumy prescribed mobic for me, in it's generic form, the first time I went in. He believes in actually treating the symptoms, thank goodness. It has helped a lot with the morning aches, and I'm sleeping better too. It's an NSAID, like ibuprofen, but it lasts 24 hours and is supposed to be easier on the stomach. Maybe your doctor would be willing to at least try something like that to give you a little relief. It's cheaper too, the generic, without insurance, was less then five dollars for a month's supply.
  Hang in there, this is a great group for support.

[Meld256]

Annabelle,

Your symptoms sound like a lot of us.  When I awake is the worst part of my day, between the aches and pains, the parched mouth and dry eyes and joints stiff and oh, so sore.
I move in slow motion for a couple of hours.

Some nights I actually don't go to bed when I should to get enough sleep because I hate the waking up part. Sad, huh?

It can get better with treatment, so I hope that you are on your way to getting help from docs. In the meantime, know that we all understand!

Take care,
Melinda

[annabelle]

Melinda, you are so right.  I sometimes find myself avoiding going to be just dreading the waking up part in the morning.  I am very fortunate to be retired so at least I don't have to go anywhere early.  I do not think I am a particularly old 66.  We were traveling a lot and enjoying retirement.  .Up until last year, I went to the gym and worked out 1-2 hours a day and walked my dog for 2 miles.  Still trying to get my dog out, but gym is impossible right now.  Even if it doesn't change anything, I would be happy just to have a dx.

[eyeamdry]

Oh, reading this is very telling.  I am your age Annabelle, and don't think I should be next to dead in the morning.  I go to bed late and then am up every hour to pee and not even a wink in-between trips to the bathroom.  Then I spray some Biotene or other stuff I use.  Usually I wake my husband up and then he gets up at 4 or 5 am and I haven't been to sleep yet.  He then sleeps (watching tv) in the recliner.  He goes to the gym about 7 am.

I often get up around 9 or 10 and just go potty, get a drink and maybe take a pain pill and lay on the couch for another couple of hours or more.  Then possibly I can get some "energy" to get up and Im showering and getting dresseed at 4 p.m.

I do not take sleeping pills, but do have pain meds I take a couple of times a day and also a muscle relaxer.  Nothing will get me to sleep.  You all have lots of company.  Lucy