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The Exercise Catch 22

Messages
13,774
I reckon everyone's likely to be different, and everyone should just play about and find what works best for them... although that is hard to do when so many false claims are made about the importance of de-conditioning and exercise leading to recovery from CFS. This makes it very difficult (socially and personally) for people to take the relaxed approach I think is probably best.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
My sleep is extremely disturbed as well. I know I am sleeping at night but I feel it isn't restful or refreshing. It always feels as though adrenaline or cortisol is surging through my body at night and actually feels like my body is actually swaying or moving from it. A very strange sensation but I have had it for years....Which is probably why I wake up totally tired.

I have a Fitbit as well and am able to regularly walk 10 to 12 thousand steps daily which averages out to about 5 miles daily with no consequences.

I would do almost anything to get my life back too....I would give anything to go back in time to Nov 27, 2004 which was the last day I felt "normal".
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
@soxfan I really envy you your step count. Currently I am limited to an average of 550 steps (about 220 metres) daily. If I go over one day I need to go low the next. Just a delivery man arriving at the door asking for a signature can mess things up for me. So frustrating to be so immobile. Yet I "look" normal when I walk.

Edit: Sorry - not intended to sound like I'm making light of the other symptoms and problems with sleep and so on. I generally get about 6 hours reasonably good sleep but always wake in a bit of a lather - hot and sticky and needing to spend a penny. Nothing is easy for us.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I do feel very fortunate to be able to do physical activities but on the other hand I am still extremely limited in everyday life since I still suffer from chronic fatigue and other minor symptoms. There are days when the fatigue is so bad I can't do much of anything even physically.

For instance today I woke up very tired and lethargic and still feel like that 7 hours later so am unable to get motivated to do much. I always feel like I am getting a reasonable amount of sleep but it just isn't a restful one...

I still count myself as one of the lucky ones since I am able to do many things that others can't.....
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
The experience of deconditioning is completely different. There is no PEM. It's fairly easy to get back in shape once you've already been there, even if you've been bedbound for weeks. What's hard is finally getting out of bed and finding you can barely hobble across the street!
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Sadly the restrictions of PEM mean I am rapidly deconditioning as well.

I'm trying to do a few low HR isometric exercises to try and minimise muscle loss, but all the same I've lost a huge amount of muscle strength.

I've no doubt I could pick back up if I were free of illness and able to exercise.... why then a Graded Exercise programme might even be useful. In the mean time I'm well aware it will only cause harm.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Interestingly for me the sensation of "fatigue" is rarely present. I am always having to stop myself from doing things. I start out, and would keep going doing them if it weren't for my gadgets telling me to stop before I do damage (I use a HR monitor and a Fitbit).

Every time I've ignored them and carried on regardless (cos I feel fine at the time), I have lost another bit of ability. This is what is so hard for me. The crash is almost never at the time for me, but 2 whole days afterwards. It took me a while to work this out.
 

jann1033

Senior Member
Messages
176
Yes, I don't think there's ever been any proof of deconditioning resulting from patients doing less than they safely can. If deconditioning does happen at all (likely but unproven), it's due to the limitations imposed purely by the disease itself.
I was just thinking of this. Long story but knee replacement led to 12 weeks of physical therapy. Even the therapists recognized the damage the extensive therapy had to my overall health. Neccessary to be able to have any range of motion in my leg but worsing my overall state. Interestinly even the quad muscles strengthening I did for both legs basically had no lasting affect on the always weaker non surgical leg. It still was completely weak in strenght tests they did after each session. Pre session it was moderately weak,no strenght at all after. Now you would think in 12 weeks of exercising you'd see some improvement but none, it actually took a shorter time for the non surgucal lag to reach total muscle fatigue by the end of the 12 weeks. Antedotal but IMO that showed there was something vastly different from deconditioning going on ,particularly since the last 4 weeks the therapist went with very passive exercise, due to trying to not kill me lol