Dangers of no exercise?

[Centime Tara]

I’ve been having a significant crash, lasting about 8 days now (in bed). I can feel myself getting weaker by the day. I’ve been very careful about pacing, and have not exercised at all. Shouldn’t I at least try to walk a little to avoid de conditioning?

 

[zzz]

I’ve been having a significant crash, lasting about 8 days now (in bed). I can feel myself getting weaker by the day. I’ve been very careful about pacing, and have not exercised at all. Shouldn’t I at least try to walk a little to avoid de conditioning?

No. Deconditioning happens rather slowly; it generally takes about six weeks of no activity for it to be noticeable. You're getting weaker by the day due to your crash, and this is the time when you need the most possible rest. Trying to walk a little or do any form of exercise at this point will only make your crash worse.

It's good that you have been careful about pacing. The thing about pacing is that it has no absolute requirements, and what it means changes over time with the state of your health. Sometimes pacing means doing no activity at all, or at least the bare minimum that you absolutely have to, and this applies in the middle of a bad crash.

Deconditioning is something you should not worry about. So many people with ME/CFS have made themselves permanently worse by trying to avoid deconditioning. If you can get better enough that you can do some activities without repercussions, then that's excellent. But if you start to feel additional symptoms from extra activity, either immediately or some time later, that's a clear sign you've gone too far. A good rule of thumb is to do no more than 50% of what you think you can do without aggravating your symptoms.

 

[Centime Tara]

Thank you very much!

 

[Judee]

I believe this disease causes a form of myocarditis in us though most of our doctors don't test for that. However, the doctors in UK who have post-covid said 60% of those they tested "had some organ involvement" and they did MRIs of the heart so I am guessing that is what they mean. Actually doctors caution against exercise when someone has myocarditis as it can be dangerous and cause death.

So for now, I would stick to just doing some very gentle in the bed exercises.

I did see a case study of a woman who went to Workwell Foundation to have the 2 day C-Pet testing and then very carefully started exercising using her test results and a heart monitor to make sure she did not overdo it.

I can't find the original article but I think this one talks about the patient as well: https://www.healthrising.org/blog/2...unctioning-in-chronic-fatigue-syndrome-mecfs/

 

[Wolfcub]

I continued to struggle to live as close as I could to my normal life, for too long when I first came down with this.
I could not compute the seriousness of "rest". For me "rest" was like ...."okay I'll do that......how long do I need to do it for? Half a day? An hour lying on the floor on cushions? A good lie in every morning?...."

I lifted weights (okay just a couple of river rocks) because I didn't want my arms to get weak. I even did push-ups in the morning....until I felt that horrible early morning shakiness ....and a few times my legs refused to literally work! ,,,,,which put a stop to it.

Because of that, I can see by looking in my journal, that I haven't actually got much better in two and a half years, even though I had a number of remissions in 2018 and 2019, and new symptoms arrived this year.

I'm not even severe or moderate/severe. I always think I'm "mild/moderate". But I haven't had many good days this year, except just after Covid, and when running a vitamin B2 experiment this Autumn (both petered out) because I simply don't rest enough!! I have -too many times -tried to soldier on through crashes.

 

[Centime Tara]

Thank you all!