Improvement and the danger of overactivity during relapse

[FrankDI]

I have had ME for 20 years, with relapses and remissions. I have had good years when I have been able to work. I have also had very bad months when I have been housebound.

I had a very severe relapse in October last year (2014) and in the 4 months since I have had ups and downs, but had managed to increase from being bedbound to being housebound and being able to do basic essential living tasks.

Two weeks ago I thought I had improved to a level where I could leave my flat every day and do activity. I have to admit that in the previous weeks I had not gone out of the flat without help on any single day.
In the week that I felt good I started clearing my Mum’s house (a long story, but basically my sister and I have to sell it). On one day I was going up and down stairs and filling my car twice with junk to take to the waste tip.

Last week I suffered big payback, and have been feeling really ill for one and a half weeks now, stuck in the flat and suffering with massive symptom flare. I am trying to re-establish a baseline of washing, cooking and sleeping!


I feel a bit stupid after suffering from ME for 20 years and feel that I should know how to manage this illness better.

I struggle with reining in my activity when I start to feel a bit better. I go into overdrive. And then I suffer for it. I overestimate how well my body is, because I can actually do an activity without suffering payback straight away. For me the post-exertional malaise (PEM) is very delayed, perhaps by as much as 1 week.

I worry that I keep falling back down to the same level each time I try to do more activity. I also worry that I may cause more serious long-term, permanent damage.

I am hoping that other people who have had moderate/severe ME and have had relapses might be able to offer some advice on how to manage energy. Is delayed PEM of 1 week “normal”? How do you monitor what you can actually do if your body doesn’t give you the right warning signals when you are doing it?

In the past I have got over my relapses much quicker i.e. 6-9months. I suspect that I have to re-evaluate and assume that this is a much longer process of (hopefully) improvement compared to the past. Does anyone else have this experience of their ME/CFS?

 

[MeSci]

A week is an unusually long time before PEM, but I think I have found that the 'countdown' to PEM often doesn't seem to start until I have slowed down and started resting more, so if I am overactive a few days in a row the PEM won't kick in as long as I am active. My own delay tends to be about 2-3 days, whereas for some people it can be less than 24 hours.

So I suppose it is a good idea not to be active more than one day in a row, to see how bad PEM is when it kicks in. Or you could try to prevent it altogether by going slowly when you are active and keeping your heart rate below your anaerobic threshold, which you can estimate - there is some discussion here.

Don't feel stupid - I wonder if any of us ever truly masters the art of staying within our limits! I have been ill for 20 years and still make mistakes. As for how long relapses last, I also wonder if anyone knows. We don't really know what's going on at a physiological level so are forever fumbling in the dark, guessing, hoping...I've had short-term quite-severe ones, and longer-term less-severe ones, an apparent dramatic improvement and then inexplicable decline again, and am currently striving to work out how to get back to my best-with-ME again.

Some people seem to be sure of their answers, but maybe what works for them won't work for everyone.

Not much help, am I?

 

[SDSue]

@FrankDI If you are stupid, then so am I! Resting when I feel a bit better is against everything in my being and I fight it constantly.

The only thing that seems to help is effective use of a heart rate monitor. There are many good threads, including this one, that talk about proper use.

I've been without my monitor for several months now (long story) and I am not managing the boom-bust cycle nearly as well as I was. Purchasing another one is on my list!

 

[worldbackwards]

Is delayed PEM of 1 week “normal”? How do you monitor what you can actually do if your body doesn’t give you the right warning signals when you are doing it?

I've had something like that, in the sense that there was one thing I *had* to go out in the car for every week which always made me a bit ill for a day or two, but if, say, I'd overdone it doing something else in the week, I might not feel it for a few days, but the car journey would trigger off a bad couple of weeks.

Monitoring? Trial and error. It's easier when you're severely affected and not trying to build things up quickly - nothing really changes very fast in terms of activity or symptoms, so outliers stand out. If things are changing a lot (I've never had a remission/relapse cycle, so I don't know how these things move), it might be a good idea to keep a diary of changing activities and symptoms, so as to look for patterns and keep on top of problematic stuff.