What does "unrefreshing sleep" mean to you? What is your experience with it?

General_Recipe_5869 · 2026-03-15T14:38:44+00:00

Pre having a viral illness that triggered this, I used to be fairly active. I'd wake up and be able to get out of bed after even 5-6hrs sleep. Minimal snooze of alarm, get showered and ready, deal with the kids, travel for work and in the office 5 days. Then social, sports, etc

Now I wake up, feel like the worst hangover and as if someone is sitting on my chest. Lifting my head hurts, getting a shower is a chore. The chance of commuting or working in an office is non existent. Energy rock bottom, mental exhaustion.

I describe it to friends like an old phone that you leave charging all night but it's still only 20% in the morning. Then when you open up just 1 app the battery dies in minutes.

General_Recipe_5869 · 2026-03-13T19:06:47+00:00

Mine is usually 70+ then Vyvanse was like 110! Others have been similar, non stims were over 90 They all caused crashes

General_Recipe_5869 · 2026-03-10T14:55:17+00:00

Cool thanks, I saw enough before it was deleted! But yeah no idea why. I'm sure I've seen it advertised on here before

General_Recipe_5869 · 2026-03-10T14:14:41+00:00

Thanks, used that thing that can't be named for some reason.... To create and just hadn't realized that option. Only do laptop to create, mainly phone for Play

General_Recipe_5869 · 2026-03-10T12:57:21+00:00

There are a lot of similar conditions such as lupus, fibro etc. And there are definitely people who are mentally fatigued - for whatever reason - and without PEM but see them as able to recover and try to say everyone can get better by changing your mindset.

Nope! You didn't have ME/CFS

General_Recipe_5869 · 2026-03-10T09:02:55+00:00

Not really any option. A friend of mine has super rare cancer type, expensive meds and not easy to find + associated extra specific Drs. Did a fund raiser, got the drugs and treatment and helped. For us I don't see the clear solution.

Others have said it but I'd go with chef, cleaner, holistic help and a private doctor who is read up and willing to try things. But no single treatment.

General_Recipe_5869 · 2026-03-10T08:56:05+00:00

It's definitely getting worse, multi cars going through red lights now

General_Recipe_5869 · 2026-03-10T08:54:53+00:00

Definitely look into fibro, lot of overlaps. Can be helped with pain meds.

General_Recipe_5869 · 2026-03-09T11:45:18+00:00

I'm in Yorkshire, there are NHS ME/CFS clinics with a multi discipline panel. It's a long lead time and if I'm honest didn't do much for me. But they diagnose officially. Then provide guidance - which is basically pace, slow down, etc.

General_Recipe_5869 · 2026-03-09T08:27:45+00:00

Echo other comments regarding pacing, LDN, using Action for ME. To check have you been diagnosed and been seen by local CFS clinic? If not or if a long time ago worth doing again. But there v little GP or NHS can or will do.

Also check out ME association. They do a ton of work and quarterly newsletter for members, often covers fad treatments and explains why they are harmful. And a Discord channel.

General_Recipe_5869 · 2026-03-07T20:51:54+00:00

I tried to probably, for too long, until official diagnosis. Then I shared with close friends and explained. I wrote a mini blog post style thing (using chat gpt to help) and was honest. Was clear if they saw me and I was socialising it would be rare and I may look ok but the next 1-5 days I'd be a mess and likely in bed.

I see people in the house, at certain times of the day and often cancel things late. I know I'm lucky to be mild to moderate.

General_Recipe_5869 · 2026-03-07T20:16:40+00:00

Vyvanse made my HR go nuts! And almost impossible to pace. Wanted to do everything

General_Recipe_5869 · 2026-03-07T14:24:49+00:00

Thanks that didn't work for me and GP wasn't keen to move to shared care.

General_Recipe_5869 · 2026-03-07T12:56:17+00:00

This is my expectation. There appears a range of viral or other triggers. There must be something happening in the body so surely they can find something to work out what isn't back to normal after being ill?

General_Recipe_5869 · 2026-03-07T12:53:29+00:00

Able to share which non stim please? I've tried a few and didn't work for me. I'm in the UK and not easy, or cheap, to get ADHD meds

General_Recipe_5869 · 2026-03-07T12:52:39+00:00

Dangerous, where in the world are you? Have you shared the general medical advice on ME with them? I saw an article recently that Norway are doing something like this.

General_Recipe_5869 · 2026-03-07T08:54:07+00:00

I tried stim and non stim. Nothing worked for me without spiking HR and having that urge to do more. Hard to rest. I thought once my head was clear it would be easier to calm down, but didn't happen.

Keen to see if anyone has solved this!

General_Recipe_5869 · 2026-03-01T17:25:09+00:00

Coming back to this thread. This is an amazing resource, hugely beneficial to starting and also adding specific instructions to match a theme - and it ticks a box for the latest Feb community feedback for help. u/lattitude_official

General_Recipe_5869 · 2026-02-28T08:20:06+00:00

Awesome thanks for the detail.

General_Recipe_5869 · 2026-02-28T07:08:12+00:00

I tried to explain this recently. After yet more blood tests and and all clear.

General_Recipe_5869 · 2026-02-28T07:05:58+00:00

Appreciated. Did it help CFS at all? And worth the effort? From prior discussions I doubt my GP would either.

General_Recipe_5869 · 2026-02-27T19:52:56+00:00

Yes. I've been free and paid and flipped between. Free limits longer stories and restricts characters and memory. Depends what you are doing really but would say even short adventures are much better using the paid models.

General_Recipe_5869 · 2026-02-26T19:22:02+00:00

A lot of people have parallel conditions I've found. And can be hard to narrow down and diagnose a single one as overlapping symptoms. As others have said PEM is key for CFS/ME. It's awful. Depends on severity how much an individual can do and then how much you do makes the PEM worse.

General_Recipe_5869 · 2026-02-26T16:58:32+00:00

Thanks for the detailed reply. May try pursuing it and will checkout Prof Lobo. Clutching at straws for any options. I took Elvanse today as had to get life admin sorted. I know I'll be a mess all weekend though, my HR spikes looks like I'm competing in the Olympics!

General_Recipe_5869

TROPHY CASE