Orthostatic symptoms and hydration

Started 16 March 2026 · 16 replies · 119 hearts · read 1.2k times

SaraOslo, NO · 16 March 2026

4 months ago

Orthostatic symptoms and hydration Writing it down partly to work out what I actually think.

Before anyone says it: yes, I have an appointment booked. I would still like to hear from people who have had this.

It is not severe. It is relentless, which turns out to be a different problem, and one I have found much harder to describe to anybody.

Nobody warned me about this specifically and I am starting to think that is because it is common enough that everybody assumed I knew.

Sorry to be graphic. If anybody has had this, I would rather hear it plainly than politely.

BronteHaworth, UK

The thing I underestimated was cognitive fatigue as distinct from physical. A demanding hour of thinking cost me the same as a walk.

PatrickLimerick, IE

I keep a very simple three-colour note of each day and the pattern across a month is visible in a way that no single day ever is.

KikiFacilitatorGlasgow, UK

A standing thank-you to anybody who returns to a thread with the outcome. Threads that simply stop are the ones that leave the next person stranded, and one sentence months later prevents it.

DillyNewport, UK

You have said something a lot of us have not managed to. Thank you.

6me too 9

NolCork, IE

Rest that is actually rest turned out to be a skill I did not have. Lying down with my phone was not rest and it took me a year to notice.

10me too 8

OllyReading, UK

Nol, thank you for that. It gives me somewhere to start from.

I had to renegotiate work, which was frightening and turned out to be the single most protective thing I did.

RillaAberdeen, UK

Olly has already said most of this and I want to add the one part that was different for me.

What I would say to somebody starting is that going slower than the schedule is not a compromise here. It is the sensible plan.

HalCambridge, UK

Mine improved to a genuinely better place over eighteen months and I would not have believed that in month two.

PrueChester, UK

Picking up Rilla’s point rather than starting a new one.

Temperature regulation was a thing for me that nobody had mentioned. Warmth helped considerably and it took me a year to work that out.

TobinCork, IE

#10

I found the guides here more realistic about energy than anything else I have read, because they do not assume a body with a reserve.

ClemmieNorwich, UK

#11

The overlap in symptoms means I check anything new with my clinic rather than assuming it belongs to one story or the other.

OllieCardiff, UK

#12

Nothing here is medical advice and with this combination I would say that more firmly than usual. The pacing has to be built with somebody who knows you.

BevanSwansea, UK

#13

Tobin has already said most of this and I want to add the one part that was different for me.

My clinic asked me to change one thing at a time with four weeks between changes, which felt glacial and was completely correct.

5me too 8

CloverTotnes, UK

#14

Somebody in this circle described a good day as a loan rather than a gift, and I have quoted that to about nine people since.

KikiFacilitatorGlasgow, UK

#15

Facilitator note: I am leaving this open rather than closing it, because the question has come round three times this year and this is the version I want people to find.

MorayElgin, UK

#16

Coming back at two years to say I am considerably better, that it was very slow, and that the slowness is the part I would keep.

6me too 3