Hi Svet, ive been mulling over your post since yesterday and reading the replies. I have to agree with Heapsreal and others who talk about their illness changing over time. When i was first ill 17 years ago i couldnt exercise at all for a few months and was bedbound for a while -couldnt even walk, then my ability to exercise came back and i could swim long distances and do yoga classes etc without getting PEM -although i did notice that i was not like others at exercise classes as i would have to go home to bed for a few hours afterwards to recover! I actually was quite fit at this point but i also noticed that even though i enjoyed exercise i couldnt increase my stamina or fitness levels - i was trianing at a level that would have made other people very very fit but i still felt out of condition. I was then lucky to have a remission to about 80% for quite a few years befor my latest crash 3 years ago. I can no longer exercise at all or even garden lightly due to severe PEM and also feeling like im going to collapse and die whilst i am doing the activity.
Im beginning to think that a kind of pre M.E could exist where not all the conditions for a diagnosis are met but where it could develop in the future given another virus or other insult to the body. Dr Deckoff Jones discusses this idea in a blog post of hers (sorry cant find link)
Those who say that they dont get PEM but feel ill all the time may actually be experiencing continous PEM and not realising that is what it is. For a long time i thought my activity level was higher than it was as i COULD push myself, it wasnt until having mitochondrial function testing done that i saw that my actual level i should be at was much ,much lower. Have you considered this kind of testing through Dr Myhill (dont know if shes taking on international testing referals anmore tho) it would be a good test to see if you are having the same problems as PWME.
I guess one of the things i want to point out is that i worry for some people that they are in a kind of pre M.E state and that they will over do it and go full blown at a later stage.
Take care Svet and i hope you find a way through this terrible maze.
Justy.x
Im beginning to think that a kind of pre M.E could exist where not all the conditions for a diagnosis are met but where it could develop in the future given another virus or other insult to the body. Dr Deckoff Jones discusses this idea in a blog post of hers (sorry cant find link)
Those who say that they dont get PEM but feel ill all the time may actually be experiencing continous PEM and not realising that is what it is. For a long time i thought my activity level was higher than it was as i COULD push myself, it wasnt until having mitochondrial function testing done that i saw that my actual level i should be at was much ,much lower. Have you considered this kind of testing through Dr Myhill (dont know if shes taking on international testing referals anmore tho) it would be a good test to see if you are having the same problems as PWME.
I guess one of the things i want to point out is that i worry for some people that they are in a kind of pre M.E state and that they will over do it and go full blown at a later stage.
Take care Svet and i hope you find a way through this terrible maze.
Justy.x
