I'm thinking that resting more is changing your metabolism a bit. If you were up to working, are you up to a bit of exercise? I know the E word is evil to many of us, but like you I felt better for years when I was doing a little something every day. Keeps your mind busy, and your blood moving. I'm not saying overdo, just a little walk around the house once an hour or some gentle yoga? I'm thinking your adrenals are just kind of asleep.
Also, are you keeping your mind active? like, reading or puzzles? Even if you can't finish them we need to do something to challenge our brains a bit each day.
Are you eating well? Meaning every few hours and good protein in the mix?
Also, I've noted in the past when I've been done a job and am making a transition that my body kind of goes "oh, I can rest now?" and just crashes for a long time. Could be that. Sorry to say it may take some experimentation.... hope you feel better soon!

Mm. I'm not sure what's going on. I mean, the idea is to rest enough to build up your energy so that you can have a higher function overall. I'm wondering if working was keeping some adrenaline in your system which is now gone. Maybe you are feeling worse because you don't have that adrenaline jolt. I'm not totally sure what's going on, but I am so sorry for the symptoms. I get all of that as well and I know how disruptive and upsetting it can be. My heart and prayers are with you. Many blessings.

Sometimes when we stop things get worse for a while but it's actually the body trying to heal. Maybe give yourself a gentle structure, whilst not pushing yourself and try to pace things so that you don't relapse. Don't stop completely but don't push things if you know what I mean. I got much worse before I started to pick up but that's cos I had been trying to keep going at a level that was way above where my body really was for a few years so I had to go right down first. It can be very scarey though. It might take a while to feel better...

I don't understand why, but I've experienced the same thing when I stopped working. Seems like I'm better off to keep going all the time and rest when I feel I need it.

Taking time off and doing nothing makes all my symptoms worse, and I get really depressed too.

We try to make sense out of this illness, but that doesn't work. I thought my muscle pain would ease up if I didn't exercise, but the pain stayed about the same.

I tried graded exercise for a long time...adding a bit more walking, etc. But that clearly made things worse. The limits on how much I can do in a day hasn't really changed much in the past 18 years.

The only things that help me are improved diet, adequate rest, reduced stress, and strength training. But they only help to a limited extent.