Aggressive Rest Therapy: My Experience

[Mij]

@Cheesus it is, especially for beginners. To be honest I'm no longer bored from doing ART, even when I have many things to do and feel frustrated. I reached a point many years ago that I was tired of feeling distressed/awful from pushing myself, I feel a sense of empowerment over this illness now. Perhaps a strange thing to say but it works for me

 

[Cheesus]

@Cheesus it is, especially for beginners. To be honest I'm no longer bored from doing ART, even when I have many things to do and feel frustrated. I reached a point many years ago that I was tired of feeling distressed/awful from pushing myself, I feel a sense of empowerment over this illness now. Perhaps a strange thing to say but it works for me

I'm so pleased to hear that!

I think the beginner thing is paradoxical. On one hand I spent a lot of time pushing myself in the beginning year or two, on the other I had a lot more motivation to try treatments. Now whenever I'm getting fed up I tend to think "Oh what's the point?" then overdo knowing that I am sabotaging myself.

Perhaps this is individual to me. I find I can get quite grumpy and fatalistic these days (just ask my family )

 

[Mij]

@Cheesus the big motivator for pacing and doing ART was I felt PEM was worsening from years of pushing myself., it wasn't only feeling terrible from over doing, but long term the PEM symptoms become more intense. That's a wake up call.

 

[Sasha]

Based on my own personal experience during the first 10 years I was forced to do ART because I was very ill,

I wonder if we're still at cross-purposes, Mij. Being very ill would force you to rest a lot, but it wouldn't force you to rest more than you feel you need - which is ART.

 

[Strawberry]

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?

Hi @TrishaMafia I know you asked Tania, but I will add my two cents. Reading and listening to podcasts while sitting in a chair is light activity. I think that is why I have been so much worse for the last year and a half, as I forgot to lay down in bed to rest. My "resting" for the last 17 months consisted of laying reclined on the couch with Pandora or tv on, or facebook. It wasn't restful and I have been in almost unending crash, yet I must go to work. Here it is now Tuesday, and I still have not had PEM from overdoing it on Saturday. ART MUST be in bed, with the drapes pulled and silence. When you start getting fidgety or bored, you may be rested enough to move to your chair and read, and call that being active. But sitting on the couch listening to a podcast will have to be broken up with bedrest full of silence or you are no longer following ART.

And remember, I am considered "mild" still because I work full time. It took me 5 hours of bed rest (and forced short breaks to do much needed laundry) before I felt I could sit in front of the tv with my feet up on the couch. You will need much more bed rest than I as you are more severe than I.

 

[Mel9]

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.

This is the best account I have ever read of how ME CFS started for so many. I have often wondered why the 'bed rest' after illness idea disappeared inthe 20th century.

 

[taniaaust1]

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.

By improvement I mean actual improvement where a person has better energy production and less symptoms.. its in the having more energy which you can spend that you know you are actually improving rather then just avoiding symptoms.

The whole idea of ART is so that over time one improves (unliking pacing, it isnt just about managing). That's the thing ART can make one actually better. It is due to ART I had a few year full remission in which I was able to go completely back to leading a normal life, run marathons etc.

(I got ME back cause I got an ordinary virus going around that everyone was getting after that few years remission and at that point due to that virus crashed back into ME. Getting well again doesnt remove ME risk factors whether it is via catching something again or a vaccination possibly triggering ME off).

I cant now days practice ART as Im often forced to have to do too much as Im living alone and Im severe, so currently cant do anything more then just pacing to try to avoid getting worst. I need more help then I have now to do ART again.

 

[taniaaust1]

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?

With ART esp if ME isnt minor, it is important to incorporate complete rest periods into your day where you lay and do nothing, resting brain and body, no podcasts during those times.

A person though cant tell another person just how much rest they will need for this and hence Im suggesting to treat every day for a few week trial as if it was one of your bad days and dont do more then you would on your bad ME days. I cant tell you whether you should be not listening to podcasts at all or cut back things to a degree to do nothing at all but if you dont do these on your bad days, they "may" be too much to be doing if you are going to try to recover with ART.

for me when I was doing ART when I was at my worst, it left me simply with only being able to lay in bed and watch outside or listening to rain falling or listen to the birds outside.

As far as reading and books go - reading and following conversation of any kind is quite engaging on the brain to a severe ME sufferer and in my own case I couldnt do any of that during the period I was doing ART when I had very severe ME. Listening to music had been even too much for me.. so my initial ART period was spent in silence. (I didnt play music for over a year! I was so severe I was using basic sign language).

I didnt have visitors for 9 mths, restricted conversation (my friend who used to shop for me, we didnt even say hi, he used to leave it outside and not come in and then my children would put it away. I couldnt have visitors when doing ART till I'd improved quite a bit). What a person needs to do with ART, how many rests, how long the rests, how much to cut back on to be resting enough etc.. all depends on how severe a person is.

I guess things like listening to nature sounds though wouldnt cause brain strain (unless one was noise intollerant). Its very hard doing ART for someone who is severe due to just how how they need to cut back on and rest but many of us do do this as we know its the only thing which gives some hope of actual improvement to us and we've seen that it helps.

sorry I cant tell you exactly how you you should cut back to try this as we are all different. (some may find they dont tire with reading or talking or listening to things etc).

 

[TrixieStix]

With ART esp if ME isnt minor, it is important to incorporate complete rest periods into your day where you lay and do nothing, resting brain and body, no podcasts during those times.

A person though cant tell another person just how much rest they will need for this and hence Im suggesting to treat every day for a few week trial as if it was one of your bad days and dont do more then you would on your bad ME days. I cant tell you whether you should be not listening to podcasts at all or cut back things to a degree to do nothing at all but if you dont do these on your bad days, they "may" be too much to be doing if you are going to try to recover with ART.

for me when I was doing ART when I was at my worst, it left me simply with only being able to lay in bed and watch outside or listening to rain falling or listen to the birds outside.

As far as reading and books go - reading and following conversation of any kind is quite engaging on the brain to a severe ME sufferer and in my own case I couldnt do any of that during the period I was doing ART when I had very severe ME. Listening to music had been even too much for me.. so my initial ART period was spent in silence. (I didnt play music for over a year! I was so severe I was using basic sign language).

I didnt have visitors for 9 mths, restricted conversation (my friend who used to shop for me, we didnt even say hi, he used to leave it outside and not come in and then my children would put it away. I couldnt have visitors when doing ART till I'd improved quite a bit). What a person needs to do with ART, how many rests, how long the rests, how much to cut back on to be resting enough etc.. all depends on how severe a person is.

I guess things like listening to nature sounds though wouldnt cause brain strain (unless one was noise intollerant). Its very hard doing ART for someone who is severe due to just how how they need to cut back on and rest but many of us do do this as we know its the only thing which gives some hope of actual improvement to us and we've seen that it helps.

sorry I cant tell you exactly how you you should cut back to try this as we are all different. (some may find they dont tire with reading or talking or listening to things etc).

No thankyou again, this helps me to understand more. it's good to hear about your experience and to admit the hard truth that my current system of spending all my waking hours watching tv, reading, and listening to podcasts isn't helping me and is not giving my body total rest. These things are good at distracting me from my pain. It would be really hard to go without them for days let alone weeks straight but I'm willing to try. I think I will start by first just cutting back on how many hours a day I am engaged in those activities. Not be involved in cooking will be a test too...I'm a bit of a control freak when it comes to food. lol I've always been the one who does the cooking and of course "my way is the right way"

As for nature sounds luckily I live on 5 acres in the forest...plenty of bird and rain to listen to I have a tiny little cabin on my property where I have nothing but a bed, chair, and a dresser. This is where I sleep all day so my husband's coming and goings do not disturb me. I feel lucky to have such a space.

Thanks again.

 

[Paintmyturquoise]

Just generally... I've been pacing with a polar H7 heart monitor and the sweetbeat app which (as well as heart rate variability) shows low frequency (sympathetic/stress) and high frequency (parasympathetic/relaxation) activity.

I have severe ME. just to stay below my AT I need to stay in bed, not sit up, not type, pee crouched, not move too much, Etc etc. I have OI as well. Anyway what I have noticed is that when I am reading, writing, listening, watching, even thinking, my HR drops a bit but not fully, and my stress levels stay dominant/hardly changes. Only when I successfully meditate, sit and pay full attention to my monitor, or receive a gentle but deep massage on painful spots (hips, arm pits, calves) does the parasympathetic activity come up. I think this explains what people are talking about here

On a more personal note, yes, this is driving me absolute bonkers. I know I need to lay still and think calm and safe thoughts but honestly I feel like I am on an enforced and seemingly permanent vipassna (Buddhist retreat). Like a freaking monk. I get so frustrated, my body hurts, I am bored and have lots of sad and frustrated thoughts to try and avoid.

When I do successfully get my body to stop and relax, I often fall asleep. (Is it the chicken before the egg, though?)

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).

Just wondering who your specialist was? I was taking adrenal herbs right before I standard crashing caput, I stopped them for cortisol testing and also because I was worried they were masking an underlying serious condition- which they were. I want to start them again but am a lot worse and more complicated now...

 

[Mij]

@taniaaust1 thank you for your explanation.

I'm thinking . . . for me anyways . . . having a major relapse from immune modulators and then developing OI changed the overall resting rewards of ART that may have helped with improvement at the early stage of illness, but after the years the dynamic has changed.. Something switched off. That energy production "envelop" remains the same no matter how much ART I do, and I've done ART for more than a few weeks at time.

I continue to do it because I've conditioned myself to take time out to do nothing and enjoy it.

 

[Cheesus]

The whole idea of ART is so that over time one improves (unliking pacing, it isnt just about managing). That's the thing ART can make one actually better. It is due to ART I had a few year full remission in which I was able to go completely back to leading a normal life, run marathons etc.

Wow that's amazing! I always think of marathon running as being the holy grail of recovery (I have no intention of running a marathon, but I like the option to be there nonetheless )

 

[taniaaust1]

Just wondering who your specialist was? I was taking adrenal herbs right before I standard crashing caput, I stopped them for cortisol testing and also because I was worried they were masking an underlying serious condition- which they were. I want to start them again but am a lot worse and more complicated now...

If you are in Adelaide, I was seeing (when I could still get there) Dr David Mitchell at Waterful Gully. I never got to go back to him to get my supplements and meds at the doses he probably would of wanted so I dont really know how the adrenal support supplement he put me onto (Ashwagandha which is an indian herb) would of helped (but it didnt seem to help me at the initial dose). I was though starting to improve with some of the things he was trialing with me.

 

[taniaaust1]

@taniaaust1 thank you for your explanation.

Im still trying to figure out how much having the severe OI changes things for us. Maybe those of us who have severe OI are quite different to those who dont (I do not know if I had severe OI or not when I started using ART and ended up having the recovery as I was so weak with the ME I had trouble standing and my legs didnt support me.. OI or the ME without OI, Ive not a clue).

Does it mean we have less change of recovering no matter what methods we do be it various Pacing techniques such as this thread topic or otherwise once we do have severe OI issues? Even if I could rest and do things now to a better timing, I wonder if could nowdays improve still with the severe OI.

 

[Mij]

@taniaaust1 these autonomic issues are very disabling, I know I would be more functional if I didn't have this, when I feel that chest discomfort or pressure around my forehead I need to lie down immediately. I had to do this at the bank once when I was taking care of my father's estate, I was there for almost 2 hrs and told the guy I really needed to lay down because I felt so distressed from sitting upright for so long. It feels as though there is a lack of proper blood flow to my brain and lying down restores that. I can get relief just from lying down for 20 minutes.

I go through phases where OI isn't so bad and I feel more confident going out for short periods or if I have to communicate or process information. I don't know if it ever goes away. I feel OI makes PEM worse.

 

[Justin30]

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.



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.

Did ART help with neuro issues as well? Have you seen significant improvements from this to this day or are you still quite limited? Really curious as I have heard others benefiting from it.

 

[Sasha]

I've been blundering along with this for a couple of weeks and seem to be all over the shop.

At the mo I'm feeling tremendously wired, which doesn't normally happen to this degree. No idea what to make of that.

 

[ukxmrv]

I've been blundering along with this for a couple of weeks and seem to be all over the shop.

At the mo I'm feeling tremendously wired, which doesn't normally happen to this degree. No idea what to make of that.

I've been giving this some thought as it was not talked about (as I remember) from the early ART experiments

I was never "wired" during my first 10 years or so of ME and when I practiced ART when I could. Don't remember any patients at that time talking about being "wired". It's not something I get very much now.

Be interested to hear others experiences i.e. does the wired feeling calm down with ART or is ART unsuitable to times people are feeling wired.

 

[Cheesus]

Did ART help with neuro issues as well? Have you seen significant improvements from this to this day or are you still quite limited? Really curious as I have heard others benefiting from it.

Neuro issues got a lot worse then began to improve dramatically. Those improvements disappeared, however, as I began to chronically push myself and dived into the mother of all crashes that i never recovered from.

 

[Cheesus]

I've been blundering along with this for a couple of weeks and seem to be all over the shop.

I'm having that problem too. I get a run of good days then torpedo myself. It is by far the most difficult therapy i have tried.