Endurance Exercise and ME/CFS -- Individual Experiences

[Mij]

Was there a period, say, for a month or two , when you didn't do this power walk, and you noticed that you felt a tad bit better?

Good question. No. This is why I continue to power walk. I don't get worse from it. I don't feel it's causing any type of mito damage but you never know for sure. I've been doing this for a few years now but feel this is definitely my limit. I can no longer increase it.

 

[Mij]

I second what @Mij says and like to add that an old friend of mine, who is into scientific research @ a very prestigious institute and used to run marathons for fundraising, says that running is not a healthy sport, on the contrary.

Even healthy people get hit by a storm of pro-inflammatory cytokines post marathons.

I bet that when PWME are in a viral/immunological flare up, will forcibly and naturally, be unable to sustain any physical effort, of any kind.

I've observed (for me anyways) or perhaps for other PWME that it depends on which invader is bringing on the flare up.

 

[Dr.Patient]

Was there a period, say, for a month or two , when you didn't do this power walk, and you noticed that you felt a tad bit better?

If you have physical or cognitive things to do the next day, why do you not power walk that day?

 

[Mij]

@Dr.Patient I don't want to push myself. I like to leave some extra energy in the tank. I have a system and my energy is tightly managed. It seems to work for me.

 

[Dr.Patient]

@Dr.Patient I don't want to push myself. I like to leave some extra energy in the tank. I have a system and my energy is tightly managed. It seems to work for me.

What happens say, if you stopped doing this power walk for a week or two? Would you feel worse?

 

[Mij]

What happens say, if you stopped doing this power walk for a week or two? Would you feel worse?

No I would not feel worse if I did not power walk. I'm not sure why you are asking this. Could you explain?

Power walking helps my circulation and mood like it would with the healthy population. I stay within my limits, get adequate rest and pace myself. I don't drain my reserves or push myself to do more.

 

[Dr.Patient]

No I would not feel worse if I did not power walk. I'm not sure why you are asking this. Could you explain?

Power walking helps my circulation and mood like it would with the healthy population. I stay within my limits, get adequate rest and pace myself. I don't drain my reserves or push myself to do more.

You know more about your body than anybody. Forgive my idea, but perhaps you could take a break from power walking for say, 3 months, and do something less exerting? My thought is that the damage will go on with any aerobic activity. May be you'll feel a little bit better with this...?

 

[Gingergrrl]

No I would not feel worse if I did not power walk. I'm not sure why you are asking this. Could you explain?

Power walking helps my circulation and mood like it would with the healthy population. I stay within my limits, get adequate rest and pace myself. I don't drain my reserves or push myself to do more.

@Mij, that makes sense and it sounds like you have found a way to do a power walk within the energy envelope for you and still use pacing, rest, etc. This sounds very different than trying to run a half marathon!

When I was less ill, I used to walk all the time (I would never call it a power walk LOL) and it was at a slow pace and I could stop whenever needed. Now that I have worse cardiac/autonomic symptoms, this is no longer possible but it is a dream for me that I will be able to go on a walk again in the future.

 

[Mij]

You know more about your body than anybody. Forgive my idea, but perhaps you could take a break from power walking for say, 3 months, and do something less exerting? My thought is that the damage will go on with any aerobic activity. May be you'll feel a little bit better with this...?

I don't power walk in warm/hot temperatures, so basically most of June, July and into mid August. When I start up again in the fall I'm still at the same baseline. I've considered doing something less exerting or power walking for only 30 minutes 2-3x week because I don't know if I'm causing further damage. I'm basing my activities on whether I get PEM. I'm not feeling worse but maybe that's not a good way of knowing.

Thank you for your thoughts on this.

 

[Dr.Patient]

I don't power walk in warm/hot temperatures, so basically most of June, July and into mid August. When I start up again in the fall I'm still at the same baseline. I've considered doing something less exerting or power walking for only 30 minutes 2-3x week because I don't know if I'm causing further damage. I'm basing my activities on whether I get PEM. I'm not feeling worse but maybe that's not a good way of knowing.

Thank you for your thoughts on this.

I see...so taking a break for 2 and half months does not make a difference...I still have a feeling that less exerting is better long term...but if it helps with your mood...if it is making you feel better and no PEM, and you've been doing this for years, it's probably not causing damage to your body...

 

[Mij]

@Dr.Patient That's right, no difference at all. I used to try to do a little more after the 2+ months rest but I can't. So. resting more doesn't improve my baseline where I've been at for the last few years. I get disabiling viral episodes that can last from 2 days to 2 weeks to 5 months. but I always return to baseline when it goes away. I don't get worse.

 

[SDSue]

Interesting thread. I was (was) an avid (avid!!) runner for nearly 40 years!

I learned thru brutal experience how destructive running is with my illness, and now have a healthy respect for ME/CFS. My goals no longer include marathons or even a 5K. My goals are stability and steady improvement. Anything that threatens those goals is now counted as loss in order that I may regain a life.

The walking you've described, @Mij , sounds reasonable, well-planned, and emotionally fulfilling. I hope that I, too, can someday achieve that (and remain content).

Haven't had a fever or "gotten sick" in years - since very early in this disease.

 

[MeSci]

You cannot quit when it seems too much.

I know there is dispute about an 'ME personality' but I do think there is something in it. ME seems to develop - at least sometimes - from prolonged overexertion. This would make it more likely for people who are very determined and persistent to get it that way. I certainly fit that picture and definition, as I have seen do many people here.

We know how hard it is for us to give up, precisely because we are so persistent and determined. That's why it is particularly hard for us to resist overdoing things, making ME a very cruel illness for us. We have to develop almost superhuman self-discipline to avoid making ourselves worse, especially when we are feeling relatively well.

So in the case of something we have been planning and looking forward to for a long time, it may be extremely difficult to stop once we have started.

 

[MeSci]

I don't power walk in warm/hot temperatures, so basically most of June, July and into mid August. When I start up again in the fall I'm still at the same baseline. I've considered doing something less exerting or power walking for only 30 minutes 2-3x week because I don't know if I'm causing further damage. I'm basing my activities on whether I get PEM. I'm not feeling worse but maybe that's not a good way of knowing.

Thank you for your thoughts on this.

In the current hot UK weather my energy is seriously drained just by essential activities, e.g. opening and closing curtains and blinds, standing up, etc. I haven't tried measuring my heart rate at such times, but I get very out of breath and can't sustain any activity for more than a few minutes. In cooler weather I can generally do much more. Bring it on!

 

[Dr.Patient]

I know there is dispute about an 'ME personality' but I do think there is something in it. ME seems to develop - at least sometimes - from prolonged overexertion. This would make it more likely for people who are very determined and persistent to get it that way. I certainly fit that picture and definition, as I have seen do many people here.

We know how hard it is for us to give up, precisely because we are so persistent and determined. That's why it is particularly hard for us to resist overdoing things, making ME a very cruel illness for us. We have to develop almost superhuman self-discipline to avoid making ourselves worse., especially when we are feeling relatively well.

So in the case of something we have been planning and looking forward to for a long time, it may be extremely difficult to stop once we have started.

This is one other thing that makes this illness very, very TRICKY!!!