Aggressive Rest Therapy: My Experience

[Cheesus]

Thanks, @justy - I do think that people are getting confused between ART and pacing, and I'm trying to determine what ART actually is in practice. I was assuming (perhaps wrongly) that the amount/timing is different according to what level of function you've already got. I'd been hoping that three hours a day of bedrest (plus extra rest scattered throughout the day) might do it for me, but maybe not.

I'll read that Sarah Myhill thing - thanks!

I still think it is an individual thing. The amount of energy each of us has varies wildly, so it would stand to reason that the amount of rest needed for each of us to have excess energy left would differ. As I said earlier, I think the aim is to rest more than you need to. Take what you would usually need to do in order to avoid a dip then add a lot of rest on top of that. I think some complete downtime without any stimulation is worthwhile.

 

[Mel9]

Sorry I don't understand what you mean by this. I have severe ME. I didn't mean I felt OK overall, just that if all I am doing is resting, dressing, making myself a small meal (literally nothing else) then I can feel tolerable - that doesn't mean I have improved functioning.

What an amazingly tough battle to look after four children when you were so sick
How did you do it? Hats off to you Justy.

 

[CFS_for_19_years]

I found this recently (not sure where) when I was trying to educate the DWP on the 'joys' of living with ME.

Energy Management
Living with ME (cfs) involves learning how to manage limited energy resources so that correct balance between physical activity, mental activity, and rest, can be maintained each day. How much energy you will have each day will fluctuate and vary during the day, as well as from day to day.

That was originally posted at http://www.mecfshints.com/energy-management

Bruce Campbell has written extensively on pacing and rest:
http://www.cfidsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest

Scheduled rests are a useful part of pacing, a strategy of gaining control over chronic illness by living according to a plan rather than in response to symptoms.

 

[Little Bluestem]

In terms of Fitbits, I think that's more cardio/peak zones which I'm never in, but it works out zones by age so aren't always accurate

Those standard zones by age usually do not apply to people with ME. When I got a pulse oximeter, I was surprised at how high my heart rate was after walking two blocks at a moderate pace.

If you can get your anaerobic threshold tested, it helps a lot. I live in such a rural area I was not able to do so.

 

[Strawberry]

Glad you had such good results last time, and I'm sorry you had such tough circumstances, @Strawberry.

Do you mind me asking how long you'd been ill when you started ART and what you were able to do in an average day before you started (e.g. bedbound, housebound, able to self-care, cook, etc.)?

@Sasha I am mild, leaning towards moderate. I have worked full time through this entire illness, although its an easy desk job. I've had unusual muscle stamina issues for 30 years, and been chronically ill for 20 years. So its been a long slow downward spiral. It finally got to the point that I was getting bad neuropathy when I would be active, vertigo, and I felt as if I weight 350 lbs (although I am normal weight) while walking very short distances. Now I am trying to maintain mild, and get away from the moderate. All I do is work, I am no longer able to clean or cook without bad consequences.

And in relation to your next post, I didn't find that taking short rests was doing anything, and Saturday I had completely overdone it. I washed dishes (sitting on a bar stool) and put a grocery delivery away. Thats it. Oops, I also cooked a simple dinner. I didn't sleep hardly at all that night as my legs were aching and my whole body buzzing. So Sunday I decided to lay down before I started any chores. I was so exhausted I laid there for over two hours, before my brain screamed at me that I HAD to start laundry. So I started laundry, and immediately went back to bed (heart pounding and breathing hard like I had just ran a marathon), thinking I would get up in 20 minutes. It was an hour later when I finally forced myself to get up to put the first load in the dryer, and 2nd load in the wash. Then laid down again, once again heart pounding and breathing hard, although less than before. This time it was easier to get up after 40 minutes to take clothes out of the dryer so I folded them then. After folding, I laid down again until the 2nd load was done in the dryer (about 30 minutes) and retrieved that load and folded. I laid down one more time, but felt halfway decent so was up in 20 minutes. But I stayed sitting on the couch the rest of the day. Didn't prepare food or anything.

Even though I overdid it badly on Saturday, I am not coming down with strep/flu today. Normally I am quite ill and fatigued Monday at work (its 48 hours normally until I crash with PEM). I'm still fatigued though, I feel as if I ran a marathon this morning. But not sick.

I think the point with ART is not pacing, but laying down in a quiet room until rested. No computers or reading or phones. And then very light pacing with emphasis on laying down, not in the recliner, relaxing in between light activity. I didn't even turn on music until I moved to the couch mid afternoon. With ART, reading, coloring, and texting while laying down is still considered light activity, not resting. It is NOT easy to do! 20 minutes rest after 10 minutes of light activity is definitely mild to moderate level CFS, I don't think it would work for severe bedbound. It might still work for house bound CFSers, as I basically am house bound on the weekend.

I will update in a month, and two months. And cross my fingers I can keep this up, I have to plant my garlic and onions somewhere real soon. I am going to hire a house cleaner so all I have to do is dishes, litter box, and wash clothes weekly. And put grocery deliveries away... And cook a week's worth of meat and freeze it... And get the cat toys off the floor so the vacuum robot can run... And take the garbage and recycle out... Pathetic to not be able to do that much! *sigh*

 

[Strawberry]

Wow, I didn't mean to write a novel! Sorry!

 

[Jennifer J]

Wow, I didn't mean to write a novel! Sorry!

Oh no sorry, this is good and very helpful. Thank you for writing all that you wrote. I want to say this better but I'm struggling with words. Thank you, @Strawberry, it's a really good description of what it's like to live with this illness.

 

[taniaaust1]

I developed ME/CFS at some point in the past 3 and a half years (unsure of exact onset). I was already diagnosed with Fibromyalgia so I chalked the increase in symptoms to that until I took a sudden turn for the worse and developed symptoms and a severity not explained by Fibro.

The statistics are that 25% of those who have FM go onto develop ME/CFS. So FM is a risk factor for getting this illness. Its a pity that most drs are not aware of this .

I am now not quite 6 months out from my severe flare and my disease is now at the point where the smallest amounts of physical and cognitive exertion trigger PEM. I have a primary care doctor who is supportive and is in process of diagnosing me officially and documenting it properly, but he admits he doesn't really know what to do for me and I don't know what to do either.

you should find yourself a dr at this point who specialises in ME/CFS (not one who is into GET and CBT). Having such a dr may help you to avoid more issues and may have ideas of other things to help.

So am I by default in a way doing ART?

no as it sounds like the rest you do you are doing cause you really have no choice but to be doing it for your symptom management. ART is when someone is purposely resting more then they think they need to not just manage the symptoms but to hopefully lead to a better baseline with this illness eg actually start to improve.

On a "bad day" or during PEM I sleep the same schedule and then move to my recliner chair. Only getting up to make a snack or use the bathroom.

If you did want to try to do ART its hard to know what to suggest to you as you are so very limited now but that being said it is still possible to try ART eg You could try an experiment for 3 weeks in which you treat every day (no exceptions) like as if it was one of your bad days (no visiting, no shopping, no cooking) and also try to have a nap during the day too to see if it generally helps you to feel a wee bit better.

Before you start journal exactly how you are now and rate your ME/CFS issues out of 10, dont rely on your memory too much to compare.

Be aware that improvements with ART can be slow and can take time but its great to see progress even if its slow. I used art to get from bedbound state to a fully recovered state but it took over 3 years of doing art for me to get to that full remission (the sicker you are, the more rest you will need re ART and the more you will have to limit yourself).

I actually do suggest it to you at this point to trial it seeing you havent been sick for long, you may have a better chance of changing this illness around or at least at this point prevent it from getting worst, from your post it sounded like you are still being new to this, over doing things with the consequence of getting worst.

And a few nights ago we found a fawn in our driveway with a terrible broken leg which caused me to get upset and cry and I ended up with PEM as a result.

It sounds like your adrenals are in a bad way and you cant currently deal with stress responses. My ME/CFS specialist put me onto herbal adrenal adaptagens for adrenal support. Doing aggressive rest therapy will also aid your adrenals (during enforced rest period use it for complete rest, no tv or computer if you want it to be also resting adrenals).

For me PEM almost always hits me immediately after whatever caused it.

Two possible reasons for that, you may just be so severe that occurs immediately. Severe ME patients can get instantly ill when they do things. Secondly, it may actually be orthostatic intollerance causing it. You need to tested for this if you havent already been.

And I can do something one time and it not cause PEM and the next time it does cause it. ????

Its often about how well rested you are before hand eg if not as well rested, a person break into ME symptoms far quicker on doing something.

 

[Sasha]

I think the point with ART is not pacing, but laying down in a quiet room until rested.

Thanks for your detailed reply, strawberry! But I wanted to pull this out. Laying down until you're rested is pacing, not ART, as I understand it. ART is resting more than you feel you need to, to give your body surplus energy that it can use to heal.

 

[trishrhymes]

Thanks everyone, it's really useful hearing your stories and learning the difference between pacing and ART. I haven't yet worked out how to do it for myself, but I am at least trying to pace better. I guess that's a start.

 

[Mij]

this rest thing takes time to work, you could need to be doing it for a couple of weeks before really starting to notice some improvement.

Does this work for you? By improvement do you mean more energy production or just overall feeling better?

We need to be more clear as to what types of improvements we are talking about because it might give the impression that over time we can do more. This might work at the beginning of illness but you have to be careful not to believe this ART is making you "better" ie; can do more later.

 

[Sasha]

We need to be more clear as to what types of improvements we are talking about because it might give the impression that over time we can do more. This might work at the beginning of illness but you have to be careful not to believe this ART is making you "better" ie; can do more later.

That is the entire point of ART - it's supposed to be a therapy that can actually improve your underlying health (though whether it does is not established).

 

[Ysabelle-S]

I would like to try ART. I wouldn't be looking for any miracles, just an improvement at best.

 

[justy]

That is the entire point of ART - it's supposed to be a therapy that can actually improve your underlying health (though whether it does is not established).

Yes that's right! It did this for me for a long while, although eventually slid back again.

3 weeks for me was nowhere near enough time to feel any better - it took me months of complete rest to feel any better, and at first I felt a LOT worse. It improved my overall functioning in general - but this was some years ago now!

 

[TrixieStix]

The statistics are that 25% of those who have FM go onto develop ME/CFS. So FM is a risk factor for getting this illness. Its a pity that most drs are not aware of this .



you should find yourself a dr at this point who specialises in ME/CFS (not one who is into GET and CBT). Having such a dr may help you to avoid more issues and may have ideas of other things to help.



no as it sounds like the rest you do you are doing cause you really have no choice but to be doing it for your symptom management. ART is when someone is purposely resting more then they think they need to not just manage the symptoms but to hopefully lead to a better baseline with this illness eg actually start to improve.



If you did want to try to do ART its hard to know what to suggest to you as you are so very limited now but that being said it is still possible to try ART eg You could try an experiment for 3 weeks in which you treat every day (no exceptions) like as if it was one of your bad days (no visiting, no shopping, no cooking) and also try to have a nap during the day too to see if it generally helps you to feel a wee bit better.

Before you start journal exactly how you are now and rate your ME/CFS issues out of 10, dont rely on your memory too much to compare.

Be aware that improvements with ART can be slow and can take time but its great to see progress even if its slow. I used art to get from bedbound state to a fully recovered state but it took over 3 years of doing art for me to get to that full remission (the sicker you are, the more rest you will need re ART and the more you will have to limit yourself).

I actually do suggest it to you at this point to trial it seeing you havent been sick for long, you may have a better chance of changing this illness around or at least at this point prevent it from getting worst, from your post it sounded like you are still being new to this, over doing things with the consequence of getting worst.



It sounds like your adrenals are in a bad way and you cant currently deal with stress responses. My ME/CFS specialist put me onto herbal adrenal adaptagens for adrenal support. Doing aggressive rest therapy will also aid your adrenals (during enforced rest period use it for complete rest, no tv or computer if you want it to be also resting adrenals).

Two possible reasons for that, you may just be so severe that occurs immediately. Severe ME patients can get instantly ill when they do things. Secondly, it may actually be orthostatic intollerance causing it. You need to tested for this if you havent already been.


Its often about how well rested you are before hand eg if not as well rested, a person break into ME symptoms far quicker on doing something.

hi Tania.

Thank you so much for your lengthy reply. I really appreciate you taking the time to respond. If I was to do strict ART for 3 weeks as you talked about what would be ok to do other than sleeping or sitting in my chair. I get the no tv thing as it does elicit emotional responses and takes cognitive exertion, but would reading be ok or listening to podcasts for example...or would I need to just be doing absolutely nothing whatsoever?

 

[Mij]

That is the entire point of ART - it's supposed to be a therapy that can actually improve your underlying health (though whether it does is not established).

Based on my own personal experience during the first 10 years I was forced to do ART because I was very ill, I did improve over time but whether it was from ART or just the nature of the illness is hard to say- I would say the latter. Once I improved I was able to do more and rest less but over time I gradually got worse, I developed cognitive issues and PEM.

It's a fine line but ART is something we should continue even when feeling improved.

 

[ukxmrv]

It's an interesting discussion on ART. I was one of the patients in the late 80's and early 90's who used this. I still do.

I think ART needs to be framed into what was happening at the time. As an example, a patient would come down with an acute onset virus and not recover. The viral symptoms would continue and the patient too weak and sick to carry on with their life.

For a period of time their doctor would be sympathetic but after a couple of months it would change. The patient needed to get up, back to work and increase their exercise. It was felt by some doctors that patients needed to do this to recover.

Doctors were ill-equipped then to cope with a viral infection and symptoms that did not go away. They simply did not accept that there could be any long lasting medical reason for their patients symptoms. They did not accept that chronic illness could occur after an acute viral in a previously well adult. They did not accept that the activities of normal life would make that patient worse.

Patients were encouraged to join a gym, get back to work or increase activity regardless of how they felt. The ideas of deconditioning and rehabilitation were there before the concept of GET was developed as a regime and got a name. There must have been something in the training of doctors of that time that told them along the lines of "we have vaccines and antibiotics now for our major disease, no one will get sick and not recover (who doesn't die) unless they have x, y or z..."

There was no room for a new "w".

ART was developed by patients to counter this. Faced with worse symptoms after exercise we needed a name of what made us feel a little better or what gave us a more stable baseline. ART was the name given to as much rest as possible. Cutting back on normal life activities to stop the disease getting worse and to make the patient as comfortable as possible.

Dr Ramsay noticed that his patients who did better were the ones who rested from the start of the disease. This was only possible though if one had a supporting family, doctor or financial resources. He was one of a few. The era of a convalescence after an illness had died.

We used to talk back then about what was needed. Had in mind something like the old TB wards being set up again so patients could be looked after.

It was simply impossible for patients to receive the care they needed at home. Some PWME were carers and parents. Some did not have supportive families or their families could not afford their care.

What we didn't know back then was how few of us would recover or go back to anywhere near a normal life. There were all short term things until a cure was found.

Still waiting.

Where does that leave us now? I find ART the best treatment for me if I have viral symptoms still. Can have a flu for a season or a year. Moving home or an operation put me back a year. ART works well for me to get me back to my "best functioning state".

It's not pacing. It is bed rest with light activities that I can tolerate.

Once I get back to baseline I switch to more of a pacing model. ART when needed to recover from illness or exertion.

I didn't expect this to last a lifetime.

 

[Mij]

Doctors were ill-equipped then to cope with a viral infection and symptoms that did not go away. They simply did not accept that there could be any long lasting medical reason for their patients symptoms. They did not accept that chronic illness could occur after an acute viral in a previously well adult. They did not accept that the activities of normal life would make that patient worse.

Exactly what an Internist told me many years ago. He told me he studied CFS for 10 years but no longer believed the illness goes on for years. I agreed with him at the time

 

[Cheesus]

Yes that's right! It did this for me for a long while, although eventually slid back again.

3 weeks for me was nowhere near enough time to feel any better - it took me months of complete rest to feel any better, and at first I felt a LOT worse. It improved my overall functioning in general - but this was some years ago now!

It is strange how it can make you so much worse at first. It's like the body sees you have excess energy so takes its chance and robs you of everything you've got in order to make an effort at recovering rather than merely subsisting.

Obviously that is the scientific explanation

 

[Cheesus]

It's a fine line but ART is something we should continue even when feeling improved.

That is the challenge! And it is extremely difficult.