• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

The nurse today said:

- no AV after dinner
- phase out drinking as much water - half a cup less to start with - drinking too much water may be habitual.
- though my liver test result is out of the recommended limit, it's not that bad.
- my kidneys are very good
- vit D, vit B12, magnesium (been on those for a while anyway.)

Not sure how no AV after dinner is meant to help... I think she may have conflated chronic fatigue with chronic fatigue syndrome. I sleep alright apart from when I have a virus. I'm getting the right amount of sleep. It's movement, concentration, and memory that's hard.

Ughhh so sick of having to think hard to work out if a doctor or nurse's advice is going to be useful or if they don't know but believe they do.
I want a teacher type figure who can guide me through all this.
  • Like
Reactions: alkt


I've been doing meditation because I discovered that although it seems like my brain is going, "nobody is home" a lot of happening under the surface. The meditation calms down the nervous system enough I'm more functional. Using an app called Headspace, I use it three times per day, 15 morning, 5 at noon, 10 at night. I also deleted Facebook and social media, anything that distracts my poor tired brain. That and Yoga with Adriene on YouTube have been the two most useful things I've tried. Asking my brain to make decisions is just -- ooooh man -- that's a terrible ordeal that ends in me not functioning. I think maybe the Yoga and meditation works for me because someone is telling me what to do and I don't have to try to think. That's scary. I used to just be all about my intellectual ninjitsu and how smart I was - and now I feel like I barely hang on. I haven't found anyone in the medical field who 'gets' this.
That nurse advice could be dangerous. I drink a ton of water with ME but was told I needed even more cause my body was showing signs of dehydration and my kidney test came back bad, starting to show signs of kidney damage. I have sometimes have had to have 2 litres of saline by IV as no matter what I drink, I struggle to keep my blood volume up. Low blood volume is a common issue in ME and you can be peeing straight all your fluids as often our bodies do not hold onto them well with this condition
If those medical people who are giving you advice do not know much about ME, please take care as harmful advice is often given to those who have this. It can be handy to ask about things in the main forum where more will see your post. best luck
I hear you on not wanting to Google, but I second @taniaaust1 sentiments re advice from the unknowing who are absolutely certain they're right and are, like, really really ready to gamble your life on that dangerous assumption Chin up, your courage is inspiring.

Blog entry information

Read time
1 min read
Last update

More entries in User Blogs

More entries from PracticingAcceptance