Can an ME flare up last forever ?

[massiveMEflareup]

I’m struggling. I’m at the point where even a small amount of activity results in days up to a week of being unable to do anything.

Has anyone been through this and felt better after a prolonged flare up ? I’m at 2.5 years now.

I'm at 10.5 years. 4 years in it got so bad I was given ill health retirement aged 38. It's hard going isn't it?
I pace which helps stop me being totally bed bound but I'm very limited leaving the house more than once in a week is going to cause me major issues. When I say pace I mean I sit on the sofa for a few hours rather than lay in bed. I prepare the evening meal in bits. I'll do a small task like wipe ghe kitchen sides down but wouldn't clean the whole kitchen in one go. I think I've now got past the always hoping I'll get better and got to the point of acceptance (took a long time though).
I've lost most of my family/friends as I don't think they believe it's that debilitating. I do think if I'd had cancer/physical illness they could see they may have been more understanding. I might also have got/get better health care. I was discharged once I was diagnosed and everything is well that's to be expected you gave ME.
I'm very lucky my dc are helpful and so understanding (the young was 5 when I became ill).
I know the longer you have it the more likely it seems to be permanent. Younger people though tend to be more likely to get better.
Not much help but your not the only one if that helps.

Like the pp, I was diagnosed about 12 years ago and I have made a lot of progress but it’s never gone away.

I can now stack the dishwasher in one go and wipe the sides and then sit down. I can walk a mile on a good day and provided i do no exercise the next two days I am fine.

If I overdo it I don’t feel right, legs wobble and buckle, no strength in arms etc and it lasts a couple of days and then I’m fine.

I have had a lot of acupuncture over the years. Adjusted my diet considerable to not eat tv dinners or artificial sweeteners or other crap. I drink a lot of room temp water.

I too have lost people I loved along the way as they thought I was At It. It was like they didn’t know me at all! I asked myself questions and got upset: Why would I lie? Why do you think im making excuses up to not go to your party - I’ve been looking forward to for months. Why do you think im a liar. You know me. Im not.

People like that are better off away from me as I don’t need their bullcrap. If they didn’t dump me I dumped them.

It’s a hell of a thing. I’m sure it’s hormone related too as im better now im menopausal.

Thankyou . I’m sorry you are going through it too. It helps to know I’m not alone in this but also I feel bad for others in the same situation. I just can’t see how this will get better each time I hope that it will something happens and makes things worse (covid, a miscarriage that caused sepsis, flu) it’s like I’m more prone to illnesses and they make me feel worse.