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Nancy Klimas video on a safe exercise program, how to do this when severe?

ixchelkali

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There are a number of things that will cause me to crash without any increase in HR (heart rate). Some are in my control, some not. Maybe this Klimas program will help a person maximize abilities within their individual confines of the disease, and that's great, but I just don't see it being a "recovery program". Can't heal this disease with conditioning any more than one could do that with Cancer. Might feel a bit better and be able to push the limits a bit more, but I just don't see it having any significant effect on the pathology.
I don't think Nancy Klimas is in any way touting this as a recovery program. I think she is suggesting it as a way to slowly, slowly increase our capacity for activity so that we can function better, have an improved quality of life, and perhaps avoid some of the problems that can come from prolonged bedrest and deconditioning. She isn't saying that we won't still have to live within the restrictions forced on us by ME/CFS, just that it may be possible to extend the boundries if we use a very controlled, slow, measured approach.

Even so, I think the baseline exercises suggested in the video for someone who is bedridden would certainly put me into a crash. Based on trial and error, I have to start lower and go slower than what's suggested here for severe ME, and I'm not that severe: I'm mostly, but not entirely, housebound, and I'm seldom really bedridden.

The videos never really addressed VO2 Max testing for bedridden and/or severe patients, either. I was hoping to see that in the third video.

Lacking that information (and without resources to get the testing, anyway), I'm left to rely on the feedback my body gives me. I may get one of those heartrate monitors as a tool to help me keep track of what's happening, though.
 

Tristen

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I don't think Nancy Klimas is in any way touting this as a recovery program. I think she is suggesting it as a way to slowly, slowly increase our capacity for activity so that we can function better, have an improved quality of life, and perhaps avoid some of the problems that can come from prolonged bedrest and deconditioning. She isn't saying that we won't still have to live within the restrictions forced on us by ME/CFS, just that it may be possible to extend the boundries if we use a very controlled, slow, measured approach.

Even so, I think the baseline exercises suggested in the video for someone who is bedridden would certainly put me into a crash. Based on trial and error, I have to start lower and go slower than what's suggested here for severe ME, and I'm not that severe: I'm mostly, but not entirely, housebound, and I'm seldom really bedridden.

The videos never really addressed VO2 Max testing for bedridden and/or severe patients, either. I was hoping to see that in the third video.

Lacking that information (and without resources to get the testing, anyway), I'm left to rely on the feedback my body gives me. I may get one of those heartrate monitors as a tool to help me keep track of what's happening, though.

I agree, the idea is to maximize what capacity each individual has, and obviously that has happened for some people. I also agree with you about listening to my body. My VO2 max AT is almost useless as an upper limit. Sure I'll crash if I go over that. But I can't get within 30 of that without crashing. There are many variables involved in this very complex situation of avoiding PEM/PENE, but it involves at least for me, much more than just the HR. I have more of a problem with accumulative (low HR) stressors adding to PEM than individual episodes of doing too much. I am considering getting a HR monitor, but honestly feel that it's only going to solve a fraction of what causes my crashes. But a fraction is good. I'll take what i can get. I feel the best tool of all is working diligently on developing better self aware awareness. And that will include monitoring HR too.
 

Tristen

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When I first got a HR monitor, I took a lot of data including heart rate for different activities and total daily kCal expended (according to the monitor). I had to cut my activities back HUGELY to stay under my AT (which was an eye-opener because I thought I was taking it easy already).

A big awareness thing for me was the total kCal per day data. I discovered that if I exceeded a certain total kCal per day, I still had PENE, even if I didn't exceed my AT. After that I watched my kCal consumption (by the monitor) and adjusted my daily activities to stay under my daily limit. It usually meant having to spend quite a few hours resting supine (often sleeping) every day. Once I got that routine worked out, I rarely had a crash and those I did have were almost always attributable to an infection.

On the down side: it's a pain to wear a continuous HR monitor religiously from the moment you get up to the moment you go to bed at night. And it goes through batteries at an incredible rate. Once I trained myself on how little I could do without crashing, I quit wearing the monitor because it was such a pain. :headache:
I'm sure your right about not being aware of some activities pushing us over the limit. There are things that cause my HR to be higher under the same amount of exertion than what it was under different circumstances. Heat is the first one that comes to mind. If it's a warm day, it takes much less to raise my HR. And once I get too warm, my HR just keeps climbing regardless of laying down. I have to get cooled down to get it to drop. Several variables. I do like the idea of having like a biofeedback effect with a monitor that will teach me to be more aware of how all of the variables, and not just the AT add to PEM. Great idea....got me going on this now sickofcfs.
 

Tristen

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Sounds like you might have a low blood volume problem. I think that increased HR with heat is common with that. My daughter had the same difficulties with HR and heat that you describe -- Florinef and support socks helped a lot. Might be worth checking with your doc.
I tried Florinef and Midodrine years ago when I had really bad OI, NMH, and POTS. The drugs worked great for a few days, but I couldn't take them long term. I came out of that bad OI period now, but your probably right about still having low blood volume. Thanks for the reminder. Something to look at.
 
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I dont know about what exercise she is teaching. But all I know that whatever exercise I try, I end up being so tired that my body s sore and like hell.