julieph85 Posted February 2, 2012 Report Share Posted February 2, 2012 I've had this strange thing happen twice. It's been going on for a week and I also had it for a week in November. I'm generally always thirsty since having pots and I pee frequently. However, twice now I've had these weeks where the thirst is extreme, but I'm also extremely dry. I'm so dry all over, my skin is rough and dry, my eyes are dry, bloodshot, and burning, and my mouth and lips are dry. Basically every mucus membrane is dried out and I'm more thirsty then ever in my life yet no amount of fluids will satiate it. Also, I'm peeing every thing I drink out and my pee is clear. I have tried increasing salt and it doesn't help. I've been tested for DI so I know it's not that. I'm also negative for Sjogrens. What could possibly be drying me out so bad. It is awful. When this happened in November it just suddenly stopped after about 4 days. I'm going to the doc this afternoon what should they test for? Quote Link to comment Share on other sites More sharing options...
issie Posted February 2, 2012 Report Share Posted February 2, 2012 I wish I knew the answer to this . . . .have the same thing. It's like the water doesn't go into the cells and we are chronically dehydrated - despite drinking plenty. Quote Link to comment Share on other sites More sharing options...
Elfie Posted February 2, 2012 Report Share Posted February 2, 2012 The weather? I don't know where you are located, but where I live almost EVERYONE is currently parched. The cold dry air with no snow or rain for weeks on end plus being indoors with dry heat going will literally desicate you. For me, it is just worse than for normal people because of POTS-related urination/dehydration. I can have 8 ounces of water and won't hold onto any of it-- or so it feels.But yeah, could just be normal. My perfectly healthy parents have been having the extreme dry skin, dry eyes, dry nasal passages (with frequent blood noses from dry air) issues too. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 2, 2012 Report Share Posted February 2, 2012 ME too!!! I agree with Issie I dont think the fluids we drink get to really where they need to go.....I think thats why IV hydration works so well it actually gets to the cells and tissue...why dont they study this anomoly more?Bren Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted February 2, 2012 Report Share Posted February 2, 2012 The weather? I don't know where you are located, but where I live almost EVERYONE is currently parched. The cold dry air with no snow or rain for weeks on end plus being indoors with dry heat going will literally desicate you. For me, it is just worse than for normal people because of POTS-related urination/dehydration. I can have 8 ounces of water and won't hold onto any of it-- or so it feels.But yeah, could just be normal. My perfectly healthy parents have been having the extreme dry skin, dry eyes, dry nasal passages (with frequent blood noses from dry air) issues too.The winter weather definitely worsens this in my case. I always have dry eyes and mouth, but everything (skin, nose, etc) is worse in the winter. Have you tried using a humidifier? That's helpful to me, especially at night so that I don't wake up feeling like spent the night in the Sahara. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 2, 2012 Report Share Posted February 2, 2012 Julie, are you taking any antihistamines or new immunosupressants? When i take claritin, i am dry as a bone. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 2, 2012 Author Report Share Posted February 2, 2012 Lemons, I've been taking plaquenil but that's it. It's a drug for my RA. It usually doesn't cause this though cause I've been taking it on and off for years and never had that symptom. Also, it happened in november and I wasn't on the plaquenil yet. Who knows Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted February 2, 2012 Report Share Posted February 2, 2012 I've actually been experiencing this for the last five days. It came out of nowhere, and my mouth gets so dry!! Please let us know if you come up with anything! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 2, 2012 Report Share Posted February 2, 2012 I'm always dry, too, and no amount of water satisfies it. One thing I do notice in me is when I take my prescription Vitamin D, I get an extra dry, cotton mouth for a few days afterwards. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 2, 2012 Report Share Posted February 2, 2012 I have this so bad, I was convinced I had Sjogrens... until the dreaded negative lip biopsy. I just think it's a dysautonomia symptom. When I was initially evaluated for an autonomic condition, the Dr. asked specific questions about dryness - he asked about my mouth, my skin, my eyes... and other places. He also looked for signs of dryness and noted something about my legs being dry. It can also be part of peripheral neuropathy. I guess this doesn't the answer the WHY, but it is somehow part of this whole thing. A little quote from Mayo:The autonomic nervous system is important for controlling automatic functions of the body including regulation of sweating, blood pressure, heart rate, digestion and sexual function. Patients with autonomic problems can present with many disabling symptoms including lightheadedness or fainting, vomiting or constipation, heat intolerance and dryness of the mouth and eyes. The Mayo Autonomic Disorders group offers comprehensive evaluation and treatment of autonomic disorders including detailed laboratory testing of autonomic function. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 2, 2012 Author Report Share Posted February 2, 2012 Sue, that's really interesting. I just started taking extra vitamin D. Maybe that's drying me out extra. Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 3, 2012 Report Share Posted February 3, 2012 This is how I always am since POTS. Its a little better with the florinef and there are days when it is particularly bad (as are all my other symptoms) but its always there. I think it is the great mystery of dystautonomia. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 why dont they study this anomoly more?BrenIm the same a lot and if its any help to know, most of the research going on at Vanderbilt is looking at the renin/ald paradox, blood volume and two on kidney dopamine and salt handling in POTS. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 3, 2012 Report Share Posted February 3, 2012 I've had this strange thing happen twice. It's been going on for a week and I also had it for a week in November. I'm generally always thirsty since having pots and I pee frequently. However, twice now I've had these weeks where the thirst is extreme, but I'm also extremely dry. I'm so dry all over, my skin is rough and dry, my eyes are dry, bloodshot, and burning, and my mouth and lips are dry. Basically every mucus membrane is dried out and I'm more thirsty then ever in my life yet no amount of fluids will satiate it. Also, I'm peeing every thing I drink out and my pee is clear. I have tried increasing salt and it doesn't help. I've been tested for DI so I know it's not that. I'm also negative for Sjogrens. What could possibly be drying me out so bad. It is awful. When this happened in November it just suddenly stopped after about 4 days. I'm going to the doc this afternoon what should they test for?Oh.. I just read this. It's exactly how I feel tonight to the extreme. I can just lay here barely able to type. ...dying of thirst which I can't quench. One of the worst days I've had when I am lying down. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted February 3, 2012 Report Share Posted February 3, 2012 why dont they study this anomoly more?BrenIm the same a lot and if its any help to know, most of the research going on at Vanderbilt is looking at the renin/ald paradox, blood volume and two on kidney dopamine and salt handling in POTS.Would that fit my low renin/low aldosterone results? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 3, 2012 Report Share Posted February 3, 2012 I know in the patienst with high angiotensin II there was low renin and ald. Quote Link to comment Share on other sites More sharing options...
issie Posted February 3, 2012 Report Share Posted February 3, 2012 why dont they study this anomoly more?BrenIm the same a lot and if its any help to know, most of the research going on at Vanderbilt is looking at the renin/ald paradox, blood volume and two on kidney dopamine and salt handling in POTS.Hoping for some answers soon for all of us. Rama, You've been real optimisstic lately about the research - sure hope you're right - that the answers are not far off. (Some of us are really getting tired of dealing.)Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 3, 2012 Author Report Share Posted February 3, 2012 Issie, include me in that group! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 3, 2012 Author Report Share Posted February 3, 2012 Rama, thank you, that is comforting! Gosh I hope they get an answer for us soon. I can't imagine spending the rest of my life feeling like i'm having a horiffic hangover day in and day out. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 5, 2012 Report Share Posted February 5, 2012 Julie! A hangover is the perfect word to describe so many of my symptoms (especially my less "serious" ones but just as uncomfortable and annoying!!!) I have never thought of it in that way before. I also get the awful dryness... ALL over my body. Eyes, nose, skin everywhere, and my mouth the WORST of all. I do use humidifiers in the house and "helps" some but not enough to stop it totally... but I will say that whenever I leave the house (which is almost always to go to a doctor's appt or hospital) it seems as if it gets a lot worse. That leads me to believe it is our dry and cold weather here in Wisconsin and the typical dry atmosphere you will find in most hospitals in my case. I just had an appt. on Thurs. and my mouth was so dry I had to send hubby downstairs to get me a Gatorade because I couldn't take it anymore... but when I got home it wasn't nearly as bad. So I guess, I just gave you a completely contradicting non-answer Yes, I experience all of those symptoms daily, even at home but it is much worse when I am outside of the home or in a medical center. But the Neuro I saw did say that the dryness was completely normal and expected with many dysautomia patients.Wish I could have given you a more useful answer. I make sure I always have my Burts Bees lip balm, water, and hard candy with me at all times...Jen Quote Link to comment Share on other sites More sharing options...
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