An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

[justy]

This quote from an article is more enlightening about who this kind of exercise programme is safe for:

Every physical activity counts as exercise.
Taking a shower, grocery shopping, putting your clothes on all requires physical exertion. If you are close to reaching your body’s exercise limit just by engaging in your daily activities, only exercise on the days when you feel you have some energy left for exercise

http://cfsrecoveryproject.com/how-t...you-have-chronic-fatigue-syndrome/#safe-limit

I so much want to be able to exercise and feel 'fitter' but unfortunately I am still at the level of crashing regularly from normal daily living activities. If I do have a day where I have extra energy then I will tend to do a bit of very light gardening or go for a slightly longer walk - say 5- 10 minutes, around the garden. However I also find that just this extra level of activity can put me back in bed for a few days. It's so fraustrating.

But having also lived with M.E for many years and being mildly affected (so that I could run a household and be a mum, but not able to work as well) I can attest to the fact that I could do some level of exercise at that time that did feel beneficial. I would love to get back to that level of ability.

For me right now, and for those of us with more moderate/severe M.E it may be very important to NOT imagine that exercise will help us - that has been a mind-set that has been damaging to me in the past - to imagine that more or different activity will help to make me feel better.

I am also aware, conversely that some 'activity' can be good for keeping lymph moving etc. which must have a knock on effect on the immune system. This is why I try and have a very short stroll around that garden most days if I can.

Interestingly de conditioning comes up a lot, even in these discussions about 'safe exercise'. I would say that on the rare occasion I have better days or even last summer a few good weeks, I didn't actually feel horribly deconditioned at all. I was able to go for longer walks, had a swim in the sea and pottered about feeling much more 'normal' I didn't feel horribly unfit.

Anyways good luck with the project - it looks very useful if you are well enough to do it, or if you have a very good and knowledgeable doctor to work with.

Justy x

 

[TigerLilea]

I can't do a lot of exercise, but I do know that on the days that I stay as active as possible within my energy envelope for the day, I sleep much better at night and my brain fog is not as severe. My doctor at one point had me on total rest with a 2 hour nap each afternoon and I went downhill really quickly after that. After four months she had me stop resting as she realized that it was a mistake. Had I continued down that road, I have no doubt that I would have ended up bedridden. I've heard it said several times now, and I think that Rich Van K was one of them, that those people with ME/CFS who didn't get any form of exercise were the least likely to get any improvement in the future.

 

[golden]

Can anyone please recommend the right heart rate monitor to buy (UK)?

I dont want smart technology though...

 

[SOC]

I've heard it said several times now, and I think that Rich Van K was one of them, that those people with ME/CFS who didn't get any form of exercise were the least likely to get any improvement in the future.

I think you're right there, the only catch is what is meant by "exercise". Being completely bedbound is almost certainly bad for anybody, although some people (not just people with severe ME/CFS, but other severe illnesses) don't have much choice in the matter.

I don't think any of our experts, doctors or physiologists, are recommending exercise in the traditional sense of the word for all ME/CFS patients. They DO consistently advise that we stay as active as possible without causing a relapse. For many PWME, especially those in the moderate/severe range, "exercise" means doing activities of daily living -- showering, dressing, housework, cooking, shopping, walking the dog, working at a paying job -- rather than sit-ups, leg-lifts, or a jog around the block.

Again, for those PWME who are already accomplishing normal activities of daily living, additional exercise within their limitations is probably a good idea.

The important point, when listening to our experts talk about "exercise" is to know what they mean by the word "exercise". They generally mean "physical activity" which can be anything from showering and dressing to light strength training or walking depending on the patient's condition. I have NEVER heard an ME/CFS expert physician or exercise physiologist recommend aerobic exercise.

 

[golden]

The scale 6 - sounds like most of the normal working population to me.

I completed the calculation figgures @SOC @valjentin talk about... I get 109.2

Can I ask then, is the idea, that I keep my heart rate roughly under this?

I dont think I can manage all the exercise research atm.

 

[SOC]

The scale 6 - sounds like most of the normal working population to me.

I completed the calculation figgures @SOC @valjentin talk about... I get 109.2

Can I ask then, is the idea, that I keep my heart rate roughly under this?

I dont think I can manage all the exercise research atm.

Yes, that's the general idea. Be cautious, though, since that's a rough estimate. If you stay near 109 all the time and find your symptoms increasing, then you should back down and only go up to 109 briefly and occasionally for whatever is hard work for you, such as stair-climbing or showering, or weight-lifting.

My measured AT is about 75% of (220-age.) Going above that at all crashes me. For me, about 65% works for everyday activity, so the 60% would be low, but safe. For people more impaired than I, it could be borderline. So use the rough calculated value as a guide, not a goal.

 

[TigerLilea]

I think you're right there, the only catch is what is meant by "exercise". Being completely bedbound is almost certainly bad for anybody, although some people (not just people with severe ME/CFS, but other severe illnesses) don't have much choice in the matter.

I consider exercise for someone with CFS/ME to be anything where you are up and moving. It doesn't matter what you are doing as long as you aren't sitting or lying around all day long. Some days I can do a short workout on my treadmill or I can do some gardening and yard work. Other days it is cooking meals and doing dishes. I personally think that the worst thing we can do to ourselves is sit around and do absolutely nothing. I don't care how bad I feel, I make myself get up and get moving every single day because I don't want to ever end up bed bound.

 

[lansbergen]

I consider exercise for someone with CFS/ME to be anything where you are up and moving. It doesn't matter what you are doing as long as you aren't sitting or lying around all day long.

When even turning over in bed is to much you have no choice.

 

[golden]

Yes, that's the general idea. Be cautious, though, since that's a rough estimate. If you stay near 109 all the time and find your symptoms increasing, then you should back down and only go up to 109 briefly and occasionally for whatever is hard work for you, such as stair-climbing or showering, or weight-lifting.

My measured AT is about 75% of (220-age.) Going above that at all crashes me. For me, about 65% works for everyday activity, so the 60% would be low, but safe. For people more impaired than I, it could be borderline. So use the rough calculated value as a guide, not a goal.

Thanks @SOC.

 

[golden]

The first 10yrs of this illness I was unable to walk 30 feet but I would force myself to put on layers of warm clothes during the winter months in hopes I could get outside just to breath some fresh air. I never made it out, I only had enough energy to remove all the clothing and lie back down. Psychologically it made me feel better that I made an attempt to get out and walk. If that's all you can do then bravo, you tried!

I would recommend dry body brushing to anyone who can't walk, don't underestimate the simplicity, it really helps keep the lymphatic system moving and increases circulation. Only 5 minutes every morning and you'll feel as though you went for a brisk 10 walk.

I was bedbound for a continual year during this illness and there really was no chance of doing anything. I think that was for the best too.

I second the lymph drainage but i would add to do it in one direction only - towards the heart. (as instructed in The. Perrin Technique) . If someone had of done this when i was bedbound - that may have been helpful.

 

[golden]

When even turning over in bed is to much you have no choice.

Yes . i agree with this.

 

[Valentijn]

Can anyone please recommend the right heart rate monitor to buy (UK)?

I think the first question is how active you are. If you can't get out of the house, and just need to check from time to time while pottering around, a pulse oximeter is very easy and convenient. If you're going to do actual "exercise", then a regular heart rate monitor on a chest strap and with a wrist readout might be necessary.

 

[golden]

Thanks @Valentijn

i can get out on an ad hoc basis. I think i will get one and try.

 

[Little Bluestem]

I don't have much faith in that formula to determine aerobic threshold. It includes age, so the older you are, the lower it will be. Older people are not necessarily sicker people.

A previous thread mentioned the Borg scale to measure an individual’s Rating of Perceived Exertion (RPE). I think that it gives a better estimate.

I am planning the get my AT measured. Meanwhile I have been using a pulse oximeter to keep tabs on my heart. I have found that by avoiding the things that really send my heart rate up, it does not go as high during some of my daily activities.

 

[Little Bluestem]

@golden, here are a couple of threads that discuss heart rate monitors and their use.

http://forums.phoenixrising.me/index.php?threads/heart-rate-monitor.25993/
http://forums.phoenixrising.me/index.php?threads/pacing-with-a-heart-rate-monitor.7426/

 

[golden]

@lartista

Members of PR have helped me.

It seems a basic courtesy to me that if you are plugging for your group on PR you would also share some knowledge and outline some basic information.here.

You are obviously well enough to run the group and plug for it. A copy paste isnt too much to ask.

 

[Little Bluestem]

I have no interest in doing it here at this website, I am sick and fully disabled. To ask me to do it here when you have been invited to where I am doing it is not thinking of me or my health.

To ask us to join yet another website is not thinking of us or our health. I doubt that I am the only who is barely able to keep with this site. If you are not interested in participating on this website, why did you join?

 

[justy]

I have joined the facebook group - swelling the numbers, but unfortunately it is not for me. I am too sick to take part in the programme.

Please understand @lartista that many on this forum are very severely disabled. I struggle at the moment with activities of daily living and a small amount of study. I have just got back from visiting my doctor in another country and will now be spending the next few days/weeks/months recovering in bed or on the sofa. Before I went I could cook a meal and felt not too bad but for now my husband has had to take over all that again - hopefully not for long though before I am back to my baseline - which was still too sick to work on exercise or increasing activity, as I am less than a 6 on Dr Learners scale.

I wish you and others on your facebook group who are able to take part in these programs all the very best for the future - I am happy to see such a positive, forward thinking project and group of people. Many of us on here are also happy and positive people, and certainly not lazy (i just undertook a gruelling road journey across Europe to see a top doctor who may be able to help me recover), we are just very very sick.

All the best
Justy.

 

[Undisclosed]

Please note, after receiving a few reports regarding this thread, I have gone back and deleted some negative/inflammatory comments. In doing this, some posts needed editing to remove references to material that had been deleted. If you see that one of your posts has been edited and want to discuss why, please contact me via Conversation.

Thank you.

Kina.