How to safely "recondition" from deconditioning when improving in recovery?

[wabi-sabi]

If you are walking it looks weird to sit on the sidewalk and a bench is unlikely to be there at the right moment.

In the moment this is exactly what you do, no matter how weird it looks. In the long term, you decide whether you are still able to walk without triggering PEM and use mobility aids if you are not. Perhaps a recumbent bike if not a walk? Many of us eventually need wheelchairs.

Remember, that in ME/CFS the high heartrate isn't due to being out of shape. It's a sign that the body isn't able to get enough oxygen to the tissues that need it, due to the illness. Think of the way a person with iron deficiency anemia gets breathless and tired. More running won't help, but iron replacement will. In ME/CFS the breathlessness is often due to orthostatic intolerance which can be helped with salt, fluid, and compression garments.

I wasn't worried about fatigue just the pain after walking.

This may be a sign of PEM for you. (I'm guessing you know what normal pain after a workout feels like and what you're describing is something different.) ME/CFS curtails our lives so much. At some point you may decide to give yourself PEM because there's something you really want or need to do. Yes, you are causing yourself an injury with every PEM, but sometimes in the moment it feels worth it.

 

[Judee]

Remember, that in ME/CFS the high heartrate isn't due to being out of shape. It's a sign that the body isn't able to get enough oxygen to the tissues that need it, due to the illness. Think of the way a person with iron deficiency anemia gets breathless and tired. More running won't help, but iron replacement will.

That is such a good explanation. I hope I can remember it when explaining to others.

 

[wabi-sabi]

That is such a good explanation.

Well, I have to keep myself entertained when lying around in bed.

 

[Florida Guy]

Remember, that in ME/CFS the high heartrate isn't due to being out of shape. It's a sign that the body isn't able to get enough oxygen to the tissues that need it, due to the illness.

Its a sign of something for sure. I sorta doubt its due to oxygen alone since I can have a low rate, get up and get something from the fridge and its up to 100 in like 5 seconds. Thats not enough time to be low on oxygen I wouldn't think. It may be related to going into anaerobic metabolism when we aren't supposed to. That could cause fatigue, pem, and low energy if we aren't using normal aerobic metabolism. Thats just something I saw in another post but it seems to make sense

 

[wabi-sabi]

get up and get something from the fridge and its up to 100 in like 5 seconds. Thats not enough time to be low on oxygen I wouldn't think.

This is orthostatic intolerance. Your heart is not able to pump blood up to your brain (which your brain notices right quick!). Your brain is the tissue that's low on oxygen. It's completely different from the low on oxygen muscle burn you get from running a marathon. That does take time.

Any rate, orthostatic intolerance isn't about being out of shape and cannot be fixed with cardio exercise. The blood that runs down to your feet when you stand up needs to be squeezed back up to your heart. That's what compression garments do. Happily, this is not a problem with the heart itself, but with the blood vessels and nervous system.

 

[Florida Guy]

wabi sabi that makes sense. But when I stand up I do not get light headed or dizzy. Even sitting I often see numbers like high 90s. I do feel a little better when lying down, it seems more restful. My body battery is down to 26 which doesn't sound too good

 

[wabi-sabi]

Even sitting I often see numbers like high 90s.

How does this compare to your numbers lying down flat? Lie down in a comfortable position long enough to really relax and then take your pulse. Keep in mind that if you are in PEM, your resting heartrate may be elevated too.
Sitting up with your feet on the floor (the way a normal person does) is only slightly easier on the body than standing up- as is reflected in a heartrate in the 90s compared to the 100s. You might compare your normally seated heartrate to seated in a cross-legged position or seated while hugging your knees to your chest.

But when I stand up I do not get light headed or dizzy.

Not everyone does.

 

[Florida Guy]

Sitting here this morning I'm seeing 77 on hr which is not bad. When I see a reading while in bed its usually around that though toward the end of the day it goes up. Last night the bb went down to 21 just before turning out the lights. Someone said if your bb gets below 30 you will have a crash the next day but I seem to have slept ok and got up to 77 on bb this morning though its dropped a bit to 75 already. So maybe you only get into trouble when you try to push and do something more when it drops that low?

Using oxygen correctly is probably part of the problem. It may be that the triggering event that gave people cfs caused us to go to anaerobic first instead of regular energy production as normal people do. If your body goes straight to anaerobic, it will have less energy available and like someone who ran a marathon you get muscle pain the next day even after a short exercise. That is what they seem to be saying about it, that is one theory and it makes sense

But the fact that your hr goes up fast with normal movement does not make sense. Brain fog and other symptoms don't make sense but apparently that is what happens when your body switches over to a diseased state. It seems like a whole bunch of things changed at once. The ans nervous system is clearly involved. Well, if the top scientists haven't solved it yet, then I can't be expected to do it either

I am recovering more and more from the bad crash I had about 3 weeks ago so I hope to be back to how I felt just before which was not too bad. Instead of going to the grocery store in the evening when fewer people are there, I should go in the morning when my strength and bb levels are high and see how that works

Good luck wabi sabi with your recovery and everyone else too