Is thirst a thing for us?

[Judee]

Don't you mean the opposite? Drinking lots of water actually causes hyponatremia (low sodium). A high sodium level / 'hypernatremia' would usually make someone thirsty.

Maybe this is another ME paradox for me because for some reason when I'm hyponatremic I crave water; not salt.

 

[Oliver3]

Aren't we all supposed to be dehydrated at the cellular level?

 

[vision blue]

I also confuse this dryness with thirst. My throat and tongue sometimes feel like sandpaper. It's associated with neuropathy as far as I know (AChR signaling in particular).

AchR =acetylcholine receptor? Ive been having new onset tongue problems ever since that fateful one drop of tropicamide 9 weeks ago. That a anti choleric drug

 

[jim777]

I don't know if this helps or not but I drank so much water when I did a 24 hour urine test that they could not measure it!

And yes since the onset of my problem over 25 years ago I drink a lot of water and I am more thirsty by a lot than I ever was before the onset of this illness.

Also I'm thin and my fasting blood sugar is in the 70's

 

[overtheedge]

I get excessively thirsty and experience frequent urination if i dont eat enough meat.

no matter how much other food i eat these symptoms wont stop unless sufficient quantities of meat are eaten.

back when my health was better than it is now it used to only happen when i would really overdo it. Now each day i have to eat a decent quantity of meat or the symptoms will show up

Frequent urination is listed as one of the comorbid conditions of CFS by the clinicians coalition so i think it's a common thing. From what ive heard glucose and fat arent well processed by PWME's but amino acids are and protein is the source of amino acids, tho why other sources of protein besides meat dont stop these symptoms in me I dont know but it's something to try if you dont routinely eat lots of meat

 

[Kevy B]

I'd say I have sometimes, my body has a pretty confused sense of hyrdration, especially if I've overdone it, physically. Sometimes I feel thirsty, drink and drink and drink through the day, my body telling me I'm dehydrated, then when I got to bed it suddenly all wants to come out again!

 

[Before_the_Dawm]

I tend to drink a decent amount of water, but it sometimes makes me feel really sick.

I also constantly have a thirst and I need more than water- other liquids to try and shift it.

 

[Before_the_Dawm]

I get excessively thirsty and experience frequent urination if i dont eat enough meat.

no matter how much other food i eat these symptoms wont stop unless sufficient quantities of meat are eaten.

back when my health was better than it is now it used to only happen when i would really overdo it. Now each day i have to eat a decent quantity of meat or the symptoms will show up

Frequent urination is listed as one of the comorbid conditions of CFS by the clinicians coalition so i think it's a common thing. From what ive heard glucose and fat arent well processed by PWME's but amino acids are and protein is the source of amino acids, tho why other sources of protein besides meat dont stop these symptoms in me I dont know but it's something to try if you dont routinely eat lots of meat

Yes, I constantly need to urinate- I've been tested for diabetes by the GP many times over the year due to this.

I wasn't aware it was connected, that's very interesting as I've only just been diagnosed but I'v with CFS

I tend to stop drinking liquids by 7pm but I'm up at least 3 times in the night needing to go, I've been like this for many years.

 

[Nord Wolf]

Yes @Emmarose47 I'm always thirsty and dehydrate quickly. I tend to drink room temp water with the slightest amount of salt in it to prevent overloading the kidneys and thyroid with too much water. The minute amount of salt in the water helps them to process it. My healthcare team told me the thirst symptom is common in people with ME/CFS and PoTS, of which I have both.

 

[Emmarose47]

Yes @Emmarose47 I'm always thirsty and dehydrate quickly. I tend to drink room temp water with the slightest amount of salt in it to prevent overloading the kidneys and thyroid with too much water. The minute amount of salt in the water helps them to process it. My healthcare team told me the thirst symptom is common in people with ME/CFS and PoTS, of which I have both.

Ah ok helpful to know ..
Cucumber water is good also for hydrating

 

[L'engle]

When you lie down your body tries to adjust it's fluid balance. Something to do with vasopressin but I can't remember the details. So the having to go before bed (several times!) can happen even if you haven't drunken a lot. It's probably worse for us than most healthy people though as our systems seem to be bad at this particular fluid balancing process.

Having something a bit salty, but not too much seems to help a bit for me but sometimes it's just like that. IT was terrible when I was younger and hadn't learned anything about hydration and just followed the 'drink as much liquid as possible' common sense.

 

[Mouse girl]

Yes, always thirsty, sometimes more than other times. I remember reading about the illness about 30 years ago when i was in my early years of being sick and someone said that they always knew the other cfs patients in a waiting room, because they always had huge water bottles they were drinking. lol

 

[Nord Wolf]

Has anyone tried this product for hydration?
https://www.aquas.us

Bit pricy...

 

[Nord Wolf]

Most of us here on PR know that dehydration and thirst go hand-in-hand with dysautonomia conditions. Many of us have spoken about here. My wife, who has Parkinson’s, found this short video today that is quite eye-opening, and makes complete sense!

We are lucky and live in the mountains far, far from any towns, and even further from any cities. So our water comes from a deep well, and therefore contains high amounts of natural minerals. Our water also has zero chlorine, fluoride, or other chemicals added to town and city water supplies. It is well known that fluoride and chlorine inhibit the cells of the body from absorbing the water people drink. It is also well known that people drinking city and town water full of added chemicals are cellularly dehydrated.

However, the video not only talks about how to remedy that for town folk, but also talks about another point concerning the amount we drink, what we can absorb, why, and how to increase the water absorption of our cells.

In my opinion, and only my opinion, those of us with various forms of dysautonomia or other nervous system conditions, have bodies that like to constrict. We lose energy fast and crash at the slightest stress or activity. Our autonomic nervous systems are malfunctioning, and so tend to overreact to normal stimulation. This forces us in the fight or flight mode. As a defense I think our bodies constrict at a cellular level to hold whatever energy we have. This prevents proper absorption of vitamins, minerals, and even water. Blood labs may show normal ranges of vitamins and minerals, for example, but that doesn’t mean our cells are absorbing them. Water is the same.

We can drink gallons, pee all day and night and still be dehydrated cellularly. My wife and I plan to get this product and give it a try, along with drinking the same amount of water every day, and then see if we notice any changes after 6 weeks.
Bioplasma

And for those with city water, or people who drink distilled water (empty water), here are the
Trace Minerals

 

[Rufous McKinney]

and still be dehydrated cellularly.

definitely agree....

Things I noticed recently:

adrenaline is VERY DRYING. (when I get nervous about going out to an appointment, I have to bring water and I will start choking, my throat/tongue are so dry)

Caffeine is very drying. I have one weak tiny cup most days, anyway.

The hydrating product sounds very interesting....

 

[Seadragon]

I remember reading about the illness about 30 years ago when i was in my early years of being sick and someone said that they always knew the other cfs patients in a waiting room, because they always had huge water bottles they were drinking. lol

I remember reading this also - I think an ME specialist in the US said this, can't remember which one. It was mentioned on the old Pro Health Immune Support forum many years ago.

Also always thirsty and dry mouth a lot, pee every half an hour often during the day, dehydrate quickly and easily.

Oddly, the thirst thing was worse when I was less ill than I am now...at one point around 10-12 years ago, I drank so much every day that I was concerned about overwhelming my kidneys. Tested negative for both types of Diabetes many times.

ETA, anyone experiencing this as a new symptom - it's worth getting tested for both types of Diabetes to rule these out as the cause.

 

[Emmarose47]

When i moved house and used more energy it was concerning how dehydrated I was..
I drink filtered water only and I chopped lots of cucumber so it was infused.... It did the job

 

[Nord Wolf]

When I had H1N1 influenza this past February and jus about kicked the bucket, my electrolytes were tanked. I had been severely sick for two weeks and drinking the entire time, but I still got so dehydrated the emergency room doctors said my organs would have started shutting down in about 6 hours due to the severity of dehydration.
After thinking about that, it made sense that with the level of ME/CFS I have, my cells just aren’t as open anymore, so I’m in a chronic state of mild dehydration. To me this would be the reason I almost dehydrated to death with influenza even while drinking.

I went back to look at my electrolytes from the ER lab results:

Sodium Value- 98 Ref Range - 136-145 mmol/L
Potassium Value-1.4 Ref Range - 3.5-5.1 mmol/L
Chloride Value- 74 Ref Range - 96-107 mmol/L
CO2 Total Value- 17 Ref Range - 21-32 mmol/L
BUN Value- 27 Ref Range - 7-25 mg/dL

So all the electrolytes were VERY low, and since the BUN was high it shows the kidneys were not functioning properly, mostly likely due to the severe dehydration.

I had my electrolytes retested last week since it had been 25 days since visiting the ER. You’ll see the results were better, but all the electrolytes are still on the low side of the scale.


Sodium Value- 134 Ref Range - 135-145 mmol/L
Potassium Value- 3.5 Ref Range - 3.5-5.1 mmol/L
Chloride Value- 97 Ref Range - 96-107 mmol/L
CO2 Total Value- 20 Ref Range - 21-32 mmol/L
BUN Value- 8 Ref Range - 7-25 mg/dL

The BUN returned to normal levels showing the kidneys are working fine again. But the electrolytes are all at the lowest “normal” range. My PCP said this is usually a sign of mild chronic dehydration.

I drink an average of 13 cups of water a day. Sometimes I only drink 12 and other times I drink up to 18 cups per day, and yet I am always thirsty, dry feeling, and wake up parched. To me all this shows my cells are just not absorbing the water properly, keeping me in chronic dehydration no matter how much I drink.

My wife and I ordered and started taking this product to see if it makes a difference.
Bioplasma

We started taking it two days ago. Supposedly, as claimed in the video I posted in an above comment, it takes about six weeks for the body to catch up on cellular water absorption. So maybe the second or third week of May I will have my electrolytes retested to see if they have improved. If so, I think that will be a good indication that the product works and the water issues is indeed in my cells.

 

[Nacht Segler]

Hi
I'm always thirsty ...
I can't seem to quench my thirst ..
Is this a thing with CFS ?

I recently experienced this...like today. I tried fizzy stuff like my kombucha. Nope. Tried heavier, more calorie leaden drinks like juice. Nope. I began to feel like nothing would help. But for me this is, or seems to be, accompanied by being "hot" in the area above my belly button. I get very warm there and want to drink something so intensely cold that I feel it go into my stomach area.

Back in the early 2000s, 03 I believe, I went out to eat alone and didn't feel good after a period of time. I left early taking my food with me and decided to drive (somehow managed) to the ER. Here, I was so dehydrated they put a bag and a half in me. I was bad enough that by the time they got to me, I knew I was in a hospital, but didn't know where or how I got there.

From that point on, I vowed to always keep fluids nearby and drink more.

Haven't had any incidents since that time.... thankfully.

 

[cheeseater]

Diabetes, alcoholism, kidney disease, Exocrine Pancreatic Insufficiency EPI) can all cause dehydration. For some reason dehydration and excessive thirst are never listed as the common symptoms of EPI, yet it is in fact a very common symptom. With causes and symptoms of CFS so widely varied and unknown among individuals, who knows?