I cannot deal with this anymore - Dry, depleted, dehydrated, weak, lifeless

Replenished

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I don't know what to do, I can't carry on living like this but nobody has any answers. Nobody has any ideas or tests that can be carried out to find a possible cause / solution.

The main issue I have is constant dry mouth and feeling completely depleted and dehydrated. That leads on to me feeling very weak and unwell.

My urine is nearly always clear even if I drink very little. I am unable to retain fluids adequately. I have been tested for diabetes insipidus and the results come back as borderline. As I do not concentrate urine as normal but it does not look like typical diabetes insipidus. I have tired desmopressin which was little to no help.

Symptoms are worse in the morning, when it is cold or when I have not eaten. Symptoms are marginally better if I have eaten a lot and in the evenings.

All standard blood tests come back as normal. Hormones normal. My endocrinologist and doctor have no idea and offer nothing.

I've looked at private blood tests and am waiting the result of some at the moment but again these appear to look at barely anything additional to the NHS bloods.

I feel as though my life is slipping away from me.

Does anyone have any ideas. What could be the cause? Could I be deficient in something? what can I try?

I have not been diagnosed with CFS / ME but my symptoms always seem to lead me back to this site. Any help would be greatly appreciated.
 

Wolfcub

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I am sorry that I don't have medical answers to help you @Replenished I hope people who comment may have some ideas.

But all I can do is send you my compassion, and a hug, because I feel for you. In many ways we are alone in spite of the NHS. Especially during the virus. I feel the same in that respect.
 

sunshine44

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I get this. Its been incredibly hard and persistent past 4 years. I am bedridden though but its worse in am's etc. I think its hormones etc they do not even know how to measure yet in my opinion, adrenals and hypothalamus being off...thats my guess for me after alot of research etc. I don't have alot of answers. i am still bedridden but how are your vitamin levels?
 

Replenished

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I am sorry that I don't have medical answers to help you @Replenished I hope people who comment may have some ideas.

But all I can do is send you my compassion, and a hug, because I feel for you. In many ways we are alone in spite of the NHS. Especially during the virus. I feel the same in that respect.
Thank you.

Here is a link for a PR forum thread which might be of interest to you.

https://forums.phoenixrising.me/thr...-deficiency-dehydration-too-much-peeing.7412/
Thanks, there is some very interesting information on that thread. I will investigate further.

I get this. Its been incredibly hard and persistent past 4 years. I am bedridden though but its worse in am's etc. I think its hormones etc they do not even know how to measure yet in my opinion, adrenals and hypothalamus being off...thats my guess for me after alot of research etc. I don't have alot of answers. i am still bedridden but how are your vitamin levels?
I think you could be right re the hypothalamus etc. What vitamin levels are you referring to? The stand NHS b12, vit D etc are all normal levels.

Have you explored Sjogren's syndrome? The dry mouth fits your description. Proteins considered as markers for Sjogrens can be identified in lab tests which could lead to a biopsy by a rheumatologist. Good luck. That sounds tough.
I did have a blood test for Sjogrens a few years ago, it came back as normal. Although I know some people have had negative blood tests and then positive on the biopsy. I don't have dry eyes or nose/mucus membranes though so I expect it's something other than Sjogrens. There's definitely an element of dehydration / an inability to retain fluids involved.
 
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The main issue I have is constant dry mouth and feeling completely depleted and dehydrated. That leads on to me feeling very weak and unwell.
I get custom mixed chinese traditional herbs for these symptoms and it helps me really alot. I go to a very excellent herbalist and mostly I did the raw herbs for many years. currently I take the granules- dehydrated tea basically.

Right now some herbs were added to my digestive formula (which itself is a near miracle)...to moisten the lungs...which help reduce the dryness in my throat.

So my Sahara desert I call it: its primarily: my throat and middle of my tongue, where a grand canyon crater can form. Its a bit less my mouth per se. Then my eyes are a mess and two eyedoctors offered me nothing. Zero zip.

This dryness they might describe as Yin deficiency. By building up the Yin some of these symptoms can lesson.

The other issue is- well I entirely avoid pharmceuticals with the side effect- dry mouth. The few times I"ve gotten near such things, my whole throat will just shut down. Like I can't swallow anything.

Meanwhile: lots of tissue swells up in my mouth daily- these are daily cycles...it comes on late afternoon. So I' m pretty sure thats mast cell stuff, the yin now missing en tirely.

I'm right now doing a Quercetin experiment. And it seems like my swellings are not as extreme, and my eyes aren't quite as bad, so I feel like thats maybe helping something...hang in there with this experiment, message to self.
 

Replenished

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It could be electrolyte problems, any magnesium supplementation?
My electrolytes always came back as normal when it comes to blood tests, although I know that doesn't necessarily mean there isn't something out of balance there.

I have taken magnesium in the past although never consistently. Any particular type or brand you'd recommend?
 
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Replenished

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Hi
What liquids do you drink from day to day.? Only water?
I've tried so many different drinks. Currently I usually drink fruit / vegetable juice during the day. I drink water at night.

Water to me does not feel hydrating AT ALL. If anything it feels dehydrating. Juice / smoothie - something with substance feels slightly more hydrating although still barely does anything.

I've tried electrolytes, lots of different milks, Kefir, kombucha, all sorts. To me fruit smoothie / juice is the most hydrating but I cant exactly drink that constantly due to it being so high in sugar.
 

dave11

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From a post by Murph, is some information on magnesium which may be of interest:

You sound a *lot* like me! I eat insane amounts of salt. I drink maybe 10L of water a day and pee about the same!If I don't drink I feel terrible. I assume blood volume gets too low.

One thing I've done recently that seemed effective was to shift brand of magnesium. I've taken magneiusm for ages, but when I shifted to the Blackmores MagMin brand I noticed somthing quite immediate. Less thirsty, less PEM.

Other things that are more like maintenance: I eat lots of bananas and I think the potassium helps. I put salt in my drinking water. I wear compression garments. I lie down as needed. I avoid the heat.

I personally find, and this would be a big change for you - that stuffing my body with carbs, fats and protein around any exertion also helps. If I eat lots of things I avoid weird low blood sugar feelings that sometimes come on after exercise and generally avoid pem.
 

LINE

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My electrolytes always came back as normal when it comes to blood tests, although I know that doesn't necessarily mean there isn't something out of balance there.

I have taken magnesium in the past although never consistently. Any particular type or brand you'd recommend?
Serum electrolytes (magnesium) can be normal while there could be a deficiency in the cell, I know this from a few hundred hours of mag research. I have 4 people on magnesium chloride which seems to be helping them. I have also used mag glycinate/lysinate from Doctor's Best and UltraMag from Source Naturals.

This is the mag chloride product which is powdered, I mix it in water and drink.
https://amzn.to/3pypgOk
 

Replenished

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Serum electrolytes (magnesium) can be normal while there could be a deficiency in the cell, I know this from a few hundred hours of mag research. I have 4 people on magnesium chloride which seems to be helping them. I have also used mag glycinate/lysinate from Doctor's Best and UltraMag from Source Naturals.

This is the mag chloride product which is powdered, I mix it in water and drink.
https://amzn.to/3pypgOk
Thanks. It has to be worth a try. Any particular dosage you would recommend?
 
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Replenished, I'm so sorry you are suffering through this. My wife is dealing from the same symptoms lately (extremely dry throat / nasal passage), and it is making her miserable. Here is some information we found. You may know this already, but perhaps something will be of use.

Do you have a lot of adrenaline surges (heart racing, etc.)? Adrenaline shuts down the salivary glands and lacrimal gland, leading to dry mouth and dry eyes. Additionally, the adrenaline forces us to breath more through our mouths which results in even more dryness.

Maybe you could try a moisturizing mouth spray, like Biotine? I don't know how effective it is, but perhaps it could provide some relief. And if you have the same issue in the nasal passage, you could try a nasal gel combined with a saline nasal spray. My wife found that if she just uses the nasal spray she feels like it dries out quickly. So she's going to try combining the spray (inside) with the gel (around the nostrils) to see if the combination helps.

We've also read that hormone changes (menopause, perimenopause, etc.) can cause dry mouth (xerostomia). I don't know if that's applicable, but something to think about.

My wife has also ordered electrolyte drops, just to make sure she has the proper electrolytes to maintain fluids.

We're going to try a few things, and if we find something that really helps, we'll share it here.
 

manasi12

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I don't know what to do, I can't carry on living like this but nobody has any answers. Nobody has any ideas or tests that can be carried out to find a possible cause / solution.

The main issue I have is constant dry mouth and feeling completely depleted and dehydrated. That leads on to me feeling very weak and unwell.

My urine is nearly always clear even if I drink very little. I am unable to retain fluids adequately. I have been tested for diabetes insipidus and the results come back as borderline. As I do not concentrate urine as normal but it does not look like typical diabetes insipidus. I have tired desmopressin which was little to no help.

Symptoms are worse in the morning, when it is cold or when I have not eaten. Symptoms are marginally better if I have eaten a lot and in the evenings.

All standard blood tests come back as normal. Hormones normal. My endocrinologist and doctor have no idea and offer nothing.

I've looked at private blood tests and am waiting the result of some at the moment but again these appear to look at barely anything additional to the NHS bloods.

I feel as though my life is slipping away from me.

Does anyone have any ideas. What could be the cause? Could I be deficient in something? what can I try?

I have not been diagnosed with CFS / ME but my symptoms always seem to lead me back to this site. Any help would be greatly appreciated.
@Replenished Did you try fludrocortisone? I have this similar problem, I can't retain water in body. This is due to hypovolemia. It is really worse in morning. If I eat something salty and take water along with it, I feel better. Otherwise I'm on the verge of collapse. Fludrocortisone has improved this symptom.

Do you get any dizziness or palpitations ? If yes, please check for POTS.

As someone has mentioned, Sjogrens may be possible issue .
 

Replenished

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@Replenished Did you try fludrocortisone? I have this similar problem, I can't retain water in body. This is due to hypovolemia. It is really worse in morning. If I eat something salty and take water along with it, I feel better. Otherwise I'm on the verge of collapse. Fludrocortisone has improved this symptom.

Do you get any dizziness or palpitations ? If yes, please check for POTS.

As someone has mentioned, Sjogrens may be possible issue .
Thanks. No I haven't tried Fludrocortisone but it has popped up in my search a couple of times. I know it is used to treat low aldosterone / adrenal insufficiency. Something out of balance with Aldosterone seems to be one of the things that can impact hydration levels so I am definitely looking to explore that. Is your Fludrocortisone prescribed by a doctor? If so, for what condition? Wondering what I need to ask my doctor for to get it prescribed.

Yes I do get dizziness etc when standing up. I've always had somewhat low blood pressure and definitely feel recently like my heart is playing catch up/palpitating when I stand up quickly. Although if I check my blood pressure from laying to standing, I don't match the numbers to be classed as having POTS.

Sjorgrens I was tested for which came back negative. Also I don't have dry eyes etc so I don't think its that.
 

LINE

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Orthostatic hypotension is another name for it. I think they do a simple test laying down w/ blood pressure check in both positions (laying down then standing up). It really means the adrenals are not working, hence the recommendation by manasi12.

Adrenals are overworked by immune activation and become tired. Also keep in mind the adrenals have a set of hormones called mineralcorticoids which control electrolytes. I used a set of supplements to restore adrenal health, let me know if you want the list.
 

Judee

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@Replenished are you able to tolerate fish oil supplements. They helped considerably with my dry eyes and dry skin when I was able to take them.

At some point I will try to add them back into my supplements because everything is drying out on me again.

I just wondered if your cells are not able to retain the electrolytes and hydration because of a lipid problem.

Dr Garth Nicolson thinks some of us have damage to our lipids although he recommends something called NT factor. However, that is too expensive for me plus has ingredients that I cannot have because of allergies.