how do you actually feel?

[MEguy]

Right now I am feeling weird with tremor and as I try and sleep, I feel weirder. I feel a throbbing kind of feeling too. How do you feel?

[ButterflyPrincess1]

Personally, I feel permanently exhausted and generally unwell.

I tend to feel worse on waking (e.g first thing in the morning), which I'd say feels something like a hangover- not that I ever drank much alcohol.

I never feel refreshed after sleeping for any length of time.

Even trivial effort causes my symptoms to worsen.

Although I'm not bedbound (through sheer stubbornness) I rarely leave the house and need a lot of practical help.

I should note that I have other conditions alongside CFS/M.E, including autoimmune issues and an ongoing tremor.

[MEguy in reply to ButterflyPrincess1]

I understand. It's a difficult illness to live with. People just don't understand it let alone doctors. I don't sleep much at the moment because I can't but I used to sleep well when my ME went into remission. Maybe you could try Modafinil which is for daytime sleepiness.

[Patdoyle]

I’m feeling dreadful at the moment. Tremors and shaky and so fatigued. I’m having to force myself to get up. Sleep is disturbed too.

[peege]

Just feel wiped out all the time. Sometimes a bit depressed too because life has become so sh*te & little lonely. I force myself to do things for some normality but then have to batten down the hatches for a few days while I recover some energy. My poor dog. I dont quite know how I did it but clocked up 12,000 steps today.