Is thirst a thing for us?

[keepswimming]

Hi, @keepswimming

I have also been a patient at a urinary continence clinic, and I have also had to keep such a diary. When I showed the nurse my diary, she exclaimed: "You are drinking too much liquid, my dear!" LOL!

I'd be curious to hear what kind of feedback you get.

I will let you know!

If you don't mind me asking, was the incontinence CFS related? I believe mine is but I haven't found many with the same symptoms.

 

[Zebra]

If you don't mind me asking, was the incontinence CFS related? I believe mine is but I haven't found many with the same symptoms.

I don't mind you asking, but I'm afraid I don't have a clear-cut answer!

My ME/CFS began with an explosion of neurological symptoms, including total loss of bladder control (which was terrifying to me).

This slowly improved on its own and evolved into "urinary urge incontinence" (aka: sudden and severe urgency, with occasional leakage).

I did a solid year of "physical therapy" at a local continence clinic, which was hugely helpful.

The "urinary urge incontinence" still flares up from time to time, usually when my other symptoms are flaring, too.

The nurses at the continence clinic were convinced I had MS, but that had (sort-of) been ruled out, so my doctor attributed this symptom to Dysautonomia/Autonomic Dysfunction, which I had been diagnosed with by an Autonomic Specialist and testing.

Hope this response is at least somewhat helpful to you!

 

[keepswimming]

I don't mind you asking, but I'm afraid I don't have a clear-cut answer!

My ME/CFS began with an explosion of neurological symptoms, including total loss of bladder control (which was terrifying to me).

This slowly improved on its own and evolved into "urinary urge incontinence" (aka: sudden and severe urgency, with occasional leakage).

I did a solid year of "physical therapy" at a local continence clinic, which was hugely helpful.

The "urinary urge incontinence" still flares up from time to time, usually when my other symptoms are flaring, too.

The nurses at the continence clinic were convinced I had MS, but that had (sort-of) been ruled out, so my doctor attributed this symptom to Dysautonomia/Autonomic Dysfunction, which I had been diagnosed with by an Autonomic Specialist and testing.

Hope this response is at least somewhat helpful to you!

Thank you. It sounds like you had a horrible sudden onset of symptoms! I'm glad you found something that helped.

I spoke to the nurse on the phone, she says she thinks I have urinary urge incontinence, on the basis that it's not stress incontinence... However I don't get the urge symptom! Personally I think it's just part of the mystery that is ME/CFS...

 

[Rufous McKinney]

Thank you. It sounds like you had a horrible sudden onset of symptoms! I'm glad you found something that helped.

I spoke to the nurse on the phone, she says she thinks I have urinary urge incontinence, on the basis that it's not stress incontinence... However I don't get the urge symptom! Personally I think it's just part of the mystery that is ME/CFS...

I am resuming an herb which improves bladder (and prostate) function. Its Nordic.

I used it in the past, and felt it was helpful.

so I Ordered a fresh batch to see if it will help my bladder which seems to have lists of issues....

SAGA PRO

Angelica archangelica

leaf....

 

[keepswimming]

I am resuming an herb which improves bladder (and prostate) function. Its Nordic.

I used it in the past, and felt it was helpful.

so I Ordered a fresh batch to see if it will help my bladder which seems to have lists of issues....

SAGA PRO

Angelica archangelica

leaf....

Thank you @Rufous McKinney ! I will look into that.

 

[keepswimming]

Hi, @keepswimming

I have also been a patient at a urinary continence clinic, and I have also had to keep such a diary. When I showed the nurse my diary, she exclaimed: "You are drinking too much liquid, my dear!" LOL!

I'd be curious to hear what kind of feedback you get.

I went to the continence clinic yesterday. The nurse was very surprised at how much I was drinking and recommended I limit my fluid intake. I'm a little unsure about this, as if my body is asking for it, does that mean it needs it...?

She believes (as I do) that the incontinence is CFS related. I know it happens most when I am in fight or flight mode, often doing an activity which takes a lot of energy. She just said "fight or flight mode can make you wet yourself". Which makes sense to me and was the conclusion I had already come to. I think it's just a reaction to the stress my body is under.

 

[YippeeKi YOW !!]

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

Without reading thru the whole thread (not focusing as well as usual, and short of time), constant unquenchable thirst seems more like a symptom of diabetes 2, among others.

What other possibilities for this have you looked into?

 

[Rufous McKinney]

Without reading thru the whole thread (not focusing as well as usual, and short of time), constant unquenchable thirst seems more like a symptom of diabetes 2, among others.

thats true...and my blood sugar is a bit erratic at the moment....

But this thing comes with the Sahara Desert moves in. We are dry dry dry. And just drink more water doesn't exactly fix it, but still.

Assuming you know your blood sugar is OK...this I treat with the chinese herbs and get a bit of help.

 

[BrightCandle]

Everytime I get a new doctor they do diabetes tests then followup tests and eventually decide I don't have it. I did a variety of glucose response tests myself throughout and have continued to conclude I do not have diabetes but doctors always find things that indicate it. There is something wrong with glucose metabolism in my body but its not diabetes.

The thirst for me remains just electrolytes, I needed a lot of them to begin with to get rid of it, 3-5 tablets a day before I have finally calmed down to 1-2 a day now.

 

[Zebra]

Link to ADH/Vasopressin info for anyone interested:

https://www.testing.com/tests/antidiuretic-hormone-adh/#section-6f152607-4ec6-45d5-9299-06ba2b9651d1

I'm still thinking about excessive thirst, excessive urination, and the Anti-Diuretic Hormone, and I wanted to share information about the Syndrome of inappropriate secretion of ADH (SIADH).

I am interested in this: "Central nervous system disorders can be associated with SIADH, perhaps through loss of chronic inhibition of the brain on the hypothalamic neurons."

Here's a link to SIADH info on UCSF website:

https://ccpd.ucsf.edu/pituitary-dis...ns/syndrome-inappropriate-secretion-adh-siadh

 

[Luxintenebrislucet]

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

yes, we have problems with vasopresine , hypothalamus and aldosterone....i drink about 2-3 liters of water with elektrolytes daily.
Getting intravenous saline can help too.

 

[Replenished]

Excessive thirst may be caused by hyponatremia. A low salt level will make a person very thirsty.

Persons with adrenal fatigue (HPA axis dysfunction) sometimes consume extra salt to compensate.

https://forums.phoenixrising.me/thr...-deficiency-dehydration-too-much-peeing.7412/

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.

 

[Replenished]

For me it's my main symptom. Thirst and frequent urination was how it all started for me, to the point where I was tested for Diabetes Insipidus (lack of vasopressin/anti-diuretic hormone) and my results were borderline. I was trialed on desmopressin the replacement hormone, which reduced the urination a little but the reduction was only short lived before the hormone wore off after a couple of hours and then all the fluid dumped back out of me. Even while retaining the fluids a little better while on desmopressin, it never helped the thirst for some reason. Overall desmopressin didn't help.

To this day since this whole thing started I've not had a day where I've not felt utterly thirsty and dehydrated. No matter what concoction of electrolytes etc I drink. It's awful.

 

[GreenMachineX]

I'm going through this now, but it seems correlated to the amount of b12 and folate I'm using, or is just highly coincidental. I'm also craving super cold refreshing fruits or fruit drinks too. HbA1c and blood sugar are fine though.

 

[Replenished]

Yep absolutely. For me the solution was a electrolytes, I needed to take them in daily and I need a substantial amount of Magnesium a day, 1.5x the dose on the packet and that is alongside the electrolyte tablets I take with water and alongside a diet that includes a lot more natural magnesium. Doing this for a months the thirst problem gradually went away

Would you be able to advise of the electrolytes and magnesium you take and the dosage?

I've experimented with electrolytes before but never seem to find the right balance or anything that makes a difference. Perhaps I haven't persisted long enough.

 

[BrightCandle]

Would you be able to advise of the electrolytes and magnesium you take and the dosage?

I've experimented with electrolytes before but never seem to find the right balance or anything that makes a difference. Perhaps I haven't persisted long enough.

For me the electrolyte drink that works the best is that by SIS (The berry is better tasting) and I needed to take 3-4 of those in different water drinks a day. Nowadays I am down to 1-2 always before bed but occasionally mid afternoon. On top of that I need to take daily potassium (1x) and 3x magnesium citrate (~1500mg or 450 elemenatal magnesium) 2 of which are just before bed and the other at lunch, I need the magnesium to sleep or I get restless legs. I have also been adding salt lunch and dinner (I eat nothing processed so there is no added salt in my ingredients usually). I add a jellybaby or two to provide the sugar necessary to properly utilise these when I take them.

IIRC it took 3 months before I saw the thirst gradually start to dissipate, it wasn't a quick process. I am rid of the restless legs now and the thirst is thankfully a distant memory.

Edit; My experience generally is any drug/supplement you take likely wont show what it will do until you have taken it for a month. I expected in the beginning if something was going to work it would do so within a week whereas now whatever treatment you try if its not hurting you the minimum trial time should be a month, not least because our condition varies a lot day to day and week to week getting any clue of improvements is at least a month. Nothing that has helped me worked much faster than that.

 

[Pyrrhus]

Related discusion:

POTS Treatment / Salt Tabs & Electrolyte Powder
https://forums.phoenixrising.me/threads/pots-treatment-salt-tabs-electrolyte-powder.60303/

 

[Booble]

I have the odd condition of being ultra thirsty in the evening and not during the morning or day.
Which, now that I think of it, coincides when I feel better.
In the morning I feel heavy like gravity is twice as strong. I'm not that interested in drinking water.
In the evening I feel light like gravity was lifted. Then I am thirsty and enjoy several glasses of water.

 

[Rufous McKinney]

In the morning I feel heavy like gravity is twice as strong

feel that way too. much lighter at night.

 

[Booble]

feel that way too. much lighter at night.

My POTS is significantly less at night too.
During the morning when I stand up and my heart races it only goes down a little bit if I stand and try to bring it down calmly. In the evening (unless I'm stressing), when I stand up my heart races and if I try to bring it down calmly it goes to a much lower level.