M.E./POTS - Treatments, medications, protocols to increase fluid retention, hydration and blood volume

[Replenished]

Not another thread from me complaining about my ongoing thirst, frequent urination and dehydration....but at this point I am certain my general symptoms are caused by low blood volume or some for of autonomic dysfunction that causes fluid loss and low blood volume. Call my condition M.E./CFS or POTS I don't know, I have the symptoms of both but they are all underpinned by this hypovolemia issue it seems. What came first the chicken or the egg; the low blood volume causing the M.E./POTS or M.E./POTS causing low blood volume and dehydration. Either way, if I ever have a brief period where I retain fluids a bit better and feel my blood volume is greater, my symptoms are massively reduced. Hence making this thread a place to list ideas on this subject and more specifically treatments, be that drugs, supplements or whatever else to increase fluid retention and blood volume.

I will list the things I am trying and experimenting with over the coming months until I find a viable solution/healing.

Currently I am experimenting with fludrocortisone. To me it feels as though it gives me around a 10 - 15% improvement in retaining fluids and urinating a bit less. I feel a little better but given the long term effects of this drug i'm unsure if such a small improvement is worth it and i'm searching for a better solution.

I am hoping to try Saline IV soon. I am seeing Dr Weir in December who I hope also might have some options/ideas around this as i've heard of him recommending saline IV and talking about the issues of frequent urination/thirst in M.E./CFS.

I have desmopression but for me it does very little. It may reduce the urination a tiny bit for an hour or so then everything it dumped out. Even when I take massive doses of desmopressin and retain fluid for a time. It doesn't feel like I'm hydrated.

NSAIDS in highish doses do seem to help me concentrate urine and retain fluids a little better temporarily for the few hours or so after taking the medication but again this is only a very mild improvement.

Electrolytes do almost nothing for me it seems. Obviously we all need them and they can he helpful for some of us who are permanently dehydrated but they don't really make me feel any better, any more hydrated or retain fluids any better.

I'm sure there are many other things to try and I'll put them here as I try them and happy for others to do the same in regards to things that have helped them retain fluids better, concentrate urine better, feel more hydrated and increase blood volume.

 

[Replenished]

https://www.healthrising.org/treati...onic-fatigue-syndrome-mecfs-and-fibromyalgia/

 

[Booble]

I am the same with low blood volume, thirst and POTS.

Highly salty pretzels in the morning and/or any time of day seem to be the best remedy for me.
Snyder's brand of pretzels is like medicine for me.

Back in the day I used to take a lot of Advil (female reasons) and that had a way of making me feel better overall too.

 

[Replenished]

I am the same with low blood volume, thirst and POTS.

Highly salty pretzels in the morning and/or any time of day seem to be the best remedy for me.
Snyder's brand of pretzels is like medicine for me.

Back in the day I used to take a lot of Advil (female reasons) and that had a way of making me feel better overall too.

Thanks, yes Advil is an NSAID, the same as Ibuprofen and they do seem to help retain / concentrate urine to a degree.

I try and avoid gluten due to sensetivities so the pretzels might be out of the question but I can try and find something similarly salty.

 

[Booble]

It's definitely a weird phenom to drink 3 glasses of water and then lay down to go to bed and feel thirsty. I was thinking about it last night that maybe my body isn't really thirsty but it's just a "feeling" of thirst.

I'm going to work on it from that angle.

 

[Rufous McKinney]

I have experienced episodes of dumping urine intensely over several hours. Then it sort of stops.

I don't know what causes it. Not much lately (nice).

I'd recommend chinese herbalist...

 

[gregh286]

I get urine/bladder dumping and thirst.
I had blood spots in urine last year and had to get the bladder camera...its very sore after.
Said bladder was inflamed...low grade. Likely chronic.

It's like an autoimmune bladder issue. And fluids just dump and pots get worse. Totally agree. My body doesn't seem to like anything that's doesn't look like water or fresh fruit juice.
But the blood spots in urology work up proves its actually physically damaging.
Tea and coffee and almost anything now makes it worse. Fizzy drinks.... caffeine etc.

Only way to stop it is drinking Sparkling water ONLY. And sip it during day. No massive volumes.
It's like the bladder can't handle any sort of acidity.
Black coffee totally makes it brutal.

 

[Booble]

I have experienced episodes of dumping urine intensely over several hours. Then it sort of stops.

I don't know what causes it. Not much lately (nice).

I'd recommend chinese herbalist...

I'm like a camel. I don't pee very often.

 

[Rufous McKinney]

I don't pee very often.

that is my normal state. I have interstitial cystitis and plenty of bladder drama.

When I got an ultrasound once after drinking a liter of water and being unable to even keep it in (I was doubled over, ready to spew it in the doctors waiting room)......they said "your bladder isn't full"

so: my bladder is a mess, and the technician told me nothing and I still know nothing.

And actually, when I go out, it is the most debilitating symptom.

 

[Gingergrrl]

I have experienced episodes of dumping urine intensely over several hours. Then it sort of stops.

This thread is super interesting b/c the last few months I'm having an issue where I literally have to pee all night long. It wakes me up all throughout the night and is affecting my sleep and I feel more tired during the day. Sometimes I have to pee 2-3x per hour vs. other times I can go 1-2 hours in between having to pee.

I have no idea why this started and assumed it was some kind of adrenal or endocrine issue (and never connected it to POTS prior to reading this thread).

The weird thing is that I don't have much thirst and I am not drinking extra fluids. I drink one cup of coffee in the morning and sometimes a second cup of decaf in the afternoon. I drink water during the day (both regular & sparkling water) and sometimes I'll add electrolytes to my water (Nuun).

My doctor had wanted me to significantly increase my fluid, but I've never been able to do it, and cannot even imagine how frequently I would be peeing if I did!

@Rufous McKinney When you used the phrase "episodes of dumping urine" - what does this mean? Is it a certain amount of urine within a specific time window? I was just curious if it is similar to me?

I don't have diabetes (mellitus) b/c my Endo runs diabetes blood tests on me regularly, both common & obscure ones, b/c I am positive for the Anti GAD65 autoantibody (so he is very cautious). I asked him re: diabetes insipidus but he thought it was unlikely b/c I don't have excessive thirst. He said there is a test for it where you withhold fluids for 72 hrs but he said it would not be safe for me b/c of my POTS & Dysautonomia and did not recommend it.

Last night I had very strong salt cravings and had to add excessive salt to my food (in case this is relevant)? I am really hoping this is another random thing that is going to stop on it's own (like the inflammation & pain in my finger)!

 

[Rufous McKinney]

"episodes of dumping urine" - what does this mean?

Just abruptly having frequent urinatoin and clearly unrelated to the small amount of water I would normally maybe have drank. Its possible maybe this is during some version of PEM, however its been a while since its happened (I now realize, nice, OK). Lasts about three hours.

Its quite obvious when its happening. I think I don' t know whats controlling it.

I am pre type 2, have to watch it, I think I am ok still. I am "fairly careful" yet there is a bit of sugar here and there.

My swollen ring finger improved, using Copaiba Oil on it (with a bit of DMSO). Calmed it all down. CBD would likely also work (as I used that before I go copaiba/ with b-caryophyllene)

I had this shocking experience yesterday in a hot bath: big patches of WHITE on my feet- OMGosh

 

[Rufous McKinney]

My doctor had wanted me to significantly increase my fluid,

I literally sort of have to force myself to drink much water. I just sip a tiny bit.

Distracted with my daughter here, I realized I/m not sitting in my chair as much, (moving to other locations) and I am not sipping water enough.

Going to drink some now. (so I"d drink four sips, thats chugging water in my book)

 

[Gingergrrl]

Just abruptly having frequent urinatoin and clearly unrelated to the small amount of water I would normally maybe have drank.

Thanks for clarifying and this is the exact same for me. For you does it happen during the night so it wakes you up while you are sleeping (or any time of day)?

My swollen ring finger improved

That is good news. Mine is still the same and I am still debating if I want to make an appt w/my new PCP.

I literally sort of have to force myself to drink much water. I just sip a tiny bit.

I used to be this way, and had to literally force myself to drink water, but luckily this has improved for me.

 

[Rufous McKinney]

does it happen during the night so it wakes you up

I seem to recall it mostly occur in daytime but its happened at night too.

 

[Judee]

This seems to be a very good list of things to avoid with POTS: https://www.dinet.org/info/pots/pots-what-to-avoid-r101/

 

[Rufous McKinney]

Reading in the link you posted....

I take hot baths to attempt to do some detox and to move some lymph. Altho in hot weather, I'm not doing that as often as in cold weather.

at least I am lying down during the baths and often have to lie down after....

 

[Judee]

Can you do artichoke for detox? I've even had it get rid of a migraine for me.

 

[Rufous McKinney]

Can you do artichoke for detox?

in what form? Never tried it.

At this moment, I can't DO anything to get to the other side until the move is completed. Then I'll be in massive rest from the trip. My plan is to immobilize upon arrival. Literally GO to bed for DAYS.

then I can resume trying things. It just isn't working, since January with all this going on here, for me to attempt to do the experiments in trying things.

 

[Judee]

Yeah, please don't worry about it for now. You definitely have too much going on right now. Just for later info:

in what form? Never tried it.

https://www.amazon.com/Oregons-Wild...-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

There are less expensive versions with milk thistle in them like Nature's Way but I found out milk thistle is a sulfur/thiol. https://www.amazon.com/Natures-Way-...099538&sprefix=natures+way+art,aps,132&sr=8-4

Or a gentler way could be just to eat them. This kind: https://www.amazon.com/produce-aisl...d=1691099418&sprefix=artichoke,aps,228&sr=8-6 ...not the Jerusalem artichoke version.