Aggressive Rest Therapy: My Experience

Cheesus

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I made a post in another thread regarding my experiences with aggressive rest therapy (ART). The venerable @Sasha remarked that it was an interesting account and may deserve a place in another thread so people can find it more easily.

When I first tried ART is was at the behest of my NHS physiotherapist (believe it or not) in preparation to slowly increase my activities level (GET - I knew you thought it was too good to be true). I was much better then than I am now, and I was doing 45 minutes of absolute rest followed by 15 minutes of gentle activity. It was insanely boring but I kept at it. After about two weeks I started to feel really awful. I got all sorts of new symptoms and my ME worsened considerably. At this point the aggressive rest became involuntary, but during that time my health condition was constantly shifting and changing, and after a few months my ME started to improve rapidly. I knew this was about to happen because I was constantly hungry.

Around 5 months after starting I had improved remarkably and started thinking I was invincible. As a result, I ended up chronically overdoing and drove myself into a horrendous two year crash that I am only just coming out of with the help of LDN. I tried aggressive rest during that time, but I was so sick that I could not physically rest enough as I still had to do things like brush my teeth and answer the call of nature. Fortunately I am now well enough to 'get behind' the ME as it were.

It is going to take a lot of willpower to do it again. It is really difficult. I think I may try to give it a go though as it is the only thing that I have ever felt was really healing. I will keep this thread updated if I can muster the strength of will to give it another proper go.
 
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Mij

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@Cheesus how long have you been ill?

I have benefited from ART and only needed shorter periods of rest during the first years of illness (approx 6 years), but found later on it changed but it could be due to OI issues since that developed later on.
 

Cheesus

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@Cheesus how long have you been ill?

I have benefited from ART and only needed shorter periods of rest during the first years of illness (approx 6 years), but found later on it changed but it could be due to OI issues since that developed later on.
I have been ill for around 3 and a half years now. That initial period of ART was after I had been ill for around a year, hence my participation with my local ME service! I am in that golden period where a decent recovery/remission is more likely under my own steam, though I feel like that opportunity may have left when I had my terrible crash a few years back because that is when my ME appeared to stop changing by itself.

What is the definition of aggressive rest therapy (ART)? Pardon my ignorance.
Aggressive rest therapy, @Living Dead, is essentially forcing yourself to rest more than you feel you need to in order to help your body recover (or at least that is how I have interpreted it). When you're doing ART you really need to keep yourself on a strict leash and it is quite difficult.

Thanks for the post. Is this what you define as Aggressive Rest Therapy? 'Absolute Rest' meaning just lying there with your eyes closed?

I'm wondering if this is kind of a standard or if others do anything different for ART?
I think it is quite an individual thing and depends on how sick you are. The 45/15 regimen that I was doing at the time was really above and beyond the amount of rest I really needed and it was tough going, but once I had landed on this seemingly random schedule I decided I really wanted to stick to it. I could feel in my body that I had a lot more energy than I was using. Things began to change quickly once I had that excessive energy in me.

If you're in the mild category then it might be that you only need to rest for 15 minutes every hour, and even then you could listen to music or a podcast or something whilst you're resting. Alternatively, if you were in the severe camp, then you would need to rest much more and probably avoid any stimulation.
 

TiredSam

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About 2 years ago I noticed that my window of activity was 3 hours, ie 3 hours after getting up in the morning that heavy exhausted feeling would come upon me. So I started pre-emptive resting, ie sending myself for a lie down 2.5 hours after getting up, before I started to feel exhausted. So I've been lying down 3x a day every day for the last 2 years, apart from exceptions when circumstances don't permit, of course.

The period of rest for me is 25 minutes, again I worked that out by observation 2 years ago, I normally feel pretty ok again after a 25-minute lie-down.

So I'll normally have a lie-down mid-morning, another one just after lunch, and another one early evening. After my early evening lie-down I'll stay up until I go to bed even if it's longer than 3 hours, because I generally feel better later in the day, and I spend the evenings lying on my sofa anyway, so I might get up from my last lie-down at 19:00 and then sit on my sofa watching stuff or doing stuff on my laptop like ranting on this forum until 23:00, or even 02:00 - I know I shouldn't but you know how it is, and I suffer no ill effects from it as long as I can sleep until about 09:00 the next day.

When I lie down I get into bed, bedroom darkened and quiet, eyes shut. If I fall asleep, I see that as a sign that I've been overdoing things or that I should be getting more sleep at night. On a good day I just relax and let my thoughts wander in a dozy way but without falling asleep for 25 mins.

During my windows of activity I also restrict what I can do or for how long, many activities are banned (sport, playing music, socialising) and most are limited (housework, cooking, shopping all to 20 minutes max). I avoid all non-essential walking or use of stairs.

I also work 10-15 hours a week, if I can I still lie down in an office I can use or in my car, and if I can't, I lie down when I get home without setting the alarm clock and get up again 30-120 minutes later, whenever I come round, as I often fall asleep then.

This is very individual and I'm a mild case, but I'd recommend observing when you usually start going downhill and making your window of activity half an hour less than that to anyone, then observe how long you need to rest before you feel ok to get up again. It sounds like a lot of time gone but actually I end up with more time where I'm fairly symptom free, before I started doing this I would keep going after 3 hours and then soon be useless for the rest of the day anyway or out-of action with a 2-day headache. This way, although it's a pain to keep sending myself to bed every 2.5 hours, especially if I'm in the middle of something, it has become routine and I have ended up feeling better for longer than I did before.
 

Cheesus

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Re: getting really hungry -- I was improving a bit and felt ravenous about two weeks ago. Overdid it and crashed the very next week.

Man, this illness. @Cheesus this is sounding like a better and better idea.
I have noticed it a few times and I have seen others talking about it too. During periods of real improvement I just want to cram all sorts of different nutrients in my face.

I am sure it is a very common phenomenon to crash after a bit of improvement, as I did when I had my major improvement from aggressive rest. You improve a bit and suddenly you're crawling to the door with your mountain bike in one hand and your skis in the other. I was rocketing upwards at the time but started overdoing in equal measure. I am on my guard for the next time that happens.

When I lie down I get into bed, bedroom darkened and quiet, eyes shut. If I fall asleep, I see that as a sign that I've been overdoing things or that I should be getting more sleep at night. On a good day I just relax and let my thoughts wander in a dozy way but without falling asleep for 25 mins.
I find that the more I overdo the worse I sleep. I take a long time to fall asleep then get horrible, vivid, restless dreams then wake up feeling like I have been through 5 rounds with Tyson.
 
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The difficulty is that you can feel more tired by resting deeply, which in itself can make things difficult, as you could almost be persuaded that you're getting worse as a result. But in time you do better, even if it means waiting for the results.

I suspect many supplements that may make us feel less energetic may have a similar effect in the long run, by preventing us from overdoing it, even if the popular supplements (which we're all mostly aware) push us faster, but possibly crash us years later. Slow and steady may indeed win the race, and if true, it would explain why there aren't as many full remissions. People don't want to go down before they can get up. In my opinion, this applies both to ART and supplements that can prevent overstimulation, or rather the more unpopular supplements.
 

slysaint

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I find that the more I overdo the worse I sleep. I take a long time to fall asleep then get horrible, vivid, restless dreams then wake up feeling like I have been through 5 rounds with Tyson.
Exactly what happens to me; and I have used the exact same phrase in the past. And it's ironic because people always say beforehand when they see me doing stuff ' Never mind, you'll sleep well tonight'. How wrong can you be.:wide-eyed:
 

Cheesus

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Exactly what happens to me; and I have used the exact same phrase in the past. And it's ironic because people always say beforehand when they see me doing stuff ' Never mind, you'll sleep well tonight'. How wrong can you be.:wide-eyed:
I know. I was talking to my doctor about sleep and he recommended I do more during the day so I sleep better. That advice could not have been worse even if he suggested I drink a load of Red Bull before bed.
 

JaimeS

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I have to say I do sleep better with more activity -- provided I don't crash.

I was in Baltimore over the summer taking some epi courses and I was walking all the time -- very short, no-more-than-15-minutes-at-a-time walking, but admittedly LOTS of it. Slept like a baby.

I'm crashed now and can barely get 3.5 hours a night. Sucks.

-J
 

Snowdrop

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Thanks for this thread @Cheesus I'm finding it very useful info here.
I have pathetically dabbled in ART, I even use a timer because otherwise I'm down for 5 mins and think 30 have gone by.

I find the boredom factor a big hurdle. And the fact that from experience I know I'll need to rest a lot before I can get to the point where I can sleep through a session.

It does happen and I find I initially feel worse after waking then have a better day the next. Problem with that as always is not doing more--soooo easy to do.

We can start an ART support network here. :)
 

slysaint

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I sleep better when I have a good restorative nap during the day.
I'm the opposite; I feel worse if I sleep (if I can get to sleep) during the day, and then can't get to sleep at night. Knocked the afternoon napping on the head years ago. I would love to see a video of me sleeping as I think I must be running a marathon in bed given how awful I feel when I wake up.
 

taniaaust1

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Thanks for the post. Is this what you define as Aggressive Rest Therapy? 'Absolute Rest' meaning just lying there with your eyes closed?

I'm wondering if this is kind of a standard or if others do anything different for ART?
As Cheesus said aggressive rest therapy (ART) is "forcing yourself to rest more than you feel you need to in order to help your body recover " .

How its done very much depends on the severity of the person. In my case it used to mean I would have to force myself to take afternoon sleeps at a certain time among other things eg only being out of bed for a certain amount of time per day etc. I believe ART is what lead to a remission I had.

ART can feel quite boring but it allows one to try to get ahead of this illness instead of always be trying to catch up with the rest from what one has done
....

At one point I was doing 2 hours enforced rest for every 15mins of activity.

The more rest I have, the better I can sleep etc. So in my case an enforced sleep (if I can do it) doesnt usually make me sleep worst. The more I do, the worst I sleep cause of increased symptoms and over stimulation.
 

Mij

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I'm the opposite; I feel worse if I sleep (if I can get to sleep) during the day, and then can't get to sleep at night. Knocked the afternoon napping on the head years ago. I would love to see a video of me sleeping as I think I must be running a marathon in bed given how awful I feel when I wake up.
Well, you do travel the world on weekends ;)
 

Sasha

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I was much better then than I am now, and I was doing 45 minutes of absolute rest followed by 15 minutes of gentle activity.
Interesting thread!

@Cheesus, what state were you in when you did this? Housebound? If you hadn't been doing the ART, how often would you have had to lain down and rested?

Did you have OI?