Esophogeal Dryness

[sugarbugar]

Hi everyone! I have a question for you, do any of you experience dryness in your esophagus?
In the morning when I first drink water it feels like My esophagus is on fire. It reminds me of putting chapstick on wind burned lips. It stays for a few minutes and then goes away.
Just curious if anyone else experiences this. Thanks!!

[Joe S.]

I sleep with a scarf tied over my head (like I have mumps). This seems to help keep moisture in. I would also talk to my doctor about this development.

[Sandisue]

Hi Sugarbugar,

I used to call my kids that....they would just laugh...  I have terrible problems with my mouth and throat. My throat gets so dry that I sometimes loose my voice and I have a dry cough. It also burns when I drink liquids too, but feels better once I moisten it. I find myself with my mouth tightly closed, like my lips are pursed just to keep air out and moisture in.. It sounds crazy, but I've been catching myself doing this... Weird. This whole thing is weird to me...Best Wishes.

Sandisue

[navydad]

I cant keep anything moist,, my lips are always dry,, mouth is dry,, even the act of drinking water seems to make my mouth feel dryer for some reason,, todays a bad one,, my hands have gone completely numb, no feeling whatsoever,, NONE,, just numb,, my legs are in bad shape,, trouble going to the bathroom,, in fact cant go at all,, just shooting pain down both legs,, and of course the burning feet,,
  I am supposed to see my therapist today,, and my GP tomorrow,, Wednesday I see the Neuro,, the Urologist because of a raised PSA,, I left a message for the new neuro I am seeing,, maybe she will give me a call,, truthfully I think I need to be in a hospital and get all this sorted out before my spine jsut collaspes on me,,
  Iknow for a fact my stomach is giving up on me,, same old story,, nothing moving,, eating fiber,, drink more water, its all crazy,, I wish they could fix just one thing,, I cant lift my arms above my shoulders,, they start to shake violently,, this does not sound like a neuropathy,, I;m getting scared,, really scared,, so if something happens to me,, let it be a lesson to you all,, push your doctors for answers, I am trying, but now that the label of long history of depression and anxiety is attached to any doctor memo,, your screwed

[Scottietottie]

Hi Sugarbugar 

Could be dryness - could also be reflux - could be a mix of both so it would be worth mentioning to your doctor to check it out.

Take care - Scottie 

[navydad]

If you have copies of your bloodwork,, look for esonophils,, a allergen marker in the blood,, it should be below 5%, if its higher it might be causing a problem with swallowing, what may seem like dryness might be exactly the opposite,, esonophils get in teh esophogus, causing inflammation, we have to be our own advocate,,

[LizPetillo]

I sleep with a scarf tied over my head (like I have mumps).

I kinda do the same thing.  I don't tie a scarf around my head/chin, but I shove pillows up under my chin and I have them on both sides of my head so I can just shove them under when I roll over.  I've been doing this for years - way before I knew I had sjogrens - so I'm used to it now.

[navydad]

I used to sleep on my stomach,, I havent done that for a couple of years now,,

[sugarbugar]

Thanks everyone for responding.
@ Joe and Liz~ I'll have to try the scarf and see if it works.
@ Navydad~ I am so sorry for all you're going through, you sound like you have autonomic failure.  I'm no Dr. but I have autonomic issues and you sound a lot like me. I do have something caused Esophogeal Dysmotility and I am being tested for Gastroparesis in February so that might be the problem.  I just think it's the dryness because it's mainly in the morning when I first wake up. 

I really pray you find a Dr. that helps you Navydad, something is seriously wrong.  I am tagged with the depression and anxiety on my chart too.  In fact, the Neuro I saw at our University before she did my Heart Rate Variable Test for Dysautonomia told me that she didn't feel I had dysautonomia at all but was subconsciously anxious all the time!!  Really!?!?!  Where do you people get your degrees from?  She felt a little dumb when my test came back for autonomic neuropathy!!

What is PSA by the way?  I am sorry you're in such bad shape, and I hope you never give up, keep trying until you get it figured out!  Oh, have you tried Aloe Vera Juice for your stomach issues?  It really helps get things moving and helps with inflammation.  I live on it!

[Patze]

Hi Sugarbugar,

Mine is a bit different than yours.  If I don't drink enough fluids, it's as though I hadn't had anything to drink in a few days and it can get a bit awful. 

Now I have eosinophilic esophagitis (I think thats what Navydad is talking about), and my eosinophilic blood count is usually within normal limits (mine was diagnosed by a biopsy).  Thankfully the gastro also has me on Flovent twice a day to help with it as some doctors don't think that it's separate from acid reflex (also use Aciphex two times a day as well).

I might be wrong, but I think the PSA that Navydad is talking about is Prostate Specific Antigen, specifically looking to see if a man might be developing cancer.

Take care of yourself -

Patze

[sugarbugar]

Now I have eosinophilic esophagitis (I think thats what Navydad is talking about), and my eosinophilic blood count is usually within normal limits (mine was diagnosed by a biopsy).  Thankfully the gastro also has me on Flovent twice a day to help with it as some doctors don't think that it's separate from acid reflex (also use Aciphex two times a day as well).

Patze~ Is this something they would test for when I go to the Mayo?  I have problems with all inhalers.  I have dysautonomia and for whatever reason, since I am on Midodrine it really effects my heart and blood pressure when I take them.  My HR goes really high, then a minute later really low and back and forth like a pendulum.  My BP does the same too.  I actually should be on an inhaler but we can't find one that works for me without my system spazzing out!

Thanks for letting me know what PSA meant! 

[Patze]

Hi Sugarbugar,

I'm sorry to hear that you're having problems with inhalers, and what do your doctors say about that reaction?

I imagine Mayo can test for it, but that would mean doing an endoscopy (thank goodness they put me to sleep for it).  It's not painful, and I did have some discomfort at the biopsy site (some stinging and that went away a couple of days later (I know, not supposed to feel it, seems that certain areas on my body are hypersensitive while others have pretty much lost feeling)).  I'm supposed to have another endoscopy done as the gastro is trying to reconfirm EoE (a bit unusual, and it seems to be more of a kids kind of thing (the current thought is that it's related to a food allergy of some kind).  Guess acting like I'm twelve doesn't count?).

Talk to your gastro and see if he thinks it might be a factor for you.  I know that the first gastro just thought that it was nothing but reflux (even though the report from the pathologist said it was EoE as I had met the criteria), and the current gastro says that I'm going much better on the combination therapy verses just a PPI only.  I just know that it doesn't burn nearly as much and I don't sound like I'm a smoker (even when I smoked, I never sounded like I get when this mess flairs).

Take care Sugar, and I hope that the folks at the Mayo can sort it out for you.

Patze

[irish]

navydad, You shaky arms when raising them could be related to the Chiara and other problems that go along with it. Irish

[sugarbugar]

Patze~ Thanks for the info, I do have an Endoscopy already scheduled in February with a Colonoscopy as well but they're not sure I'll be able to do that one because I have water imbalance problems.  I would like to get them both done and over with though.  I have gone Gluten Free and it helped with the aches and pains etc. but not everything else.  In January I have to put it all back in so they can do a biopsy for Celiac Disease.  The other thing I noticed I can't eat without feeling absolutely miserable is dairy.  I get stuffy headed right away and feel like a semi truck had just hit me.  It's like I have the worse case of flu ever, so I stay away from dairy like the plague!  I hope they get something figured out.  Thanks for everything Patze