Poll: Do You Believe Prolonged Periods of Rest Can Lead to Remission?

[Jesse2233]

I'm specifically referring to a disiciplined, long term strategy involving resting beyond the point one feels energetic enough to do activities in order to slowly rebuild one's energy envelop to the point of remission.

I'm not talking about those who are unable to do anything but rest because of severely limited energy or POTS (completely bedridden).

I define rest as "total rest", meaning eyes closed, minimal noise, and minimal thought while lying flat.

This poll is inspired by Dr MyHill's pattern of recovery, @Kimsie 's theory of rest treatment, and general discussions of agrressive rest therapy

Edit: By remission I mean the absence of symptoms with additional treatment for a sustained period of time (6 months or more), not a cure for life

 

[Murph]

Depends. This is a disease with on/off switches nested inside on/off switches.

1. The most micro level is PEM/Not PEM. you can control that with rest, definitely.

2. The next level is the mild-moderate-severe spectrum. I believe that maybe with the right treatment combined with rest, some people may be able to have some control over where they sit on the spectrum. (nb some can't and resting makes no difference).

3. But then there's the top level on/off switch. Does this person have the susceptibility to this damn condition? I've seen enough stories of people coming in and out of the disease to feel like it's baked into us somewhere, somehow, and once you've got it, you can't shake it, and certainly not by rest.

 

[Jesse2233]

Depends. This is a disease with on/off switches nested inside on/off switches.

1. The most micro level is PEM/Not PEM. you can control that with rest, definitely.

2. The next level is the mild-moderate-severe spectrum. I believe that maybe with the right treatment combined with rest, some people may be able to have some control over where they sit on the spectrum. (nb some can't and resting makes no difference).

3. But then there's the top level on/off switch. Does this person have the susceptibility to this damn condition? I've seen enough stories of people coming in and out of the disease to feel like it's baked into us somewhere, somehow, and once you've got it, you can't shake it, and certainly not by rest.

I agree Murph. By remission I mean the absence of symptoms for a sustained period of time, not a cure for life

 

[Dechi]

I voted " No but perhaps improvement ". I have been resting aggressively for 21 months now and I am sad to say I am worse, not better. Maybe there are things I did wrong. I don't know. :-(

 

[Jesse2233]

I voted " No but perhaps improvement ". I have been resting aggressively for 21 months now and I am sad to say I am worse, not better. Maybe there are things I did wrong. I don't know. :-(

Doubt it's your fault, likely just a roll of the dice

 

[Dechi]

@Jesse2233 thank you.

 

[Sushi]

In my experience I can't "bank" energy--it is just not possible for me to build up any reserves.

 

[Lolo]

If I over rest I feel worse, zonked and a little crazy from the boredom of it all.

 

[Biarritz13]

I voted " No but perhaps improvement ". I have been resting aggressively for 21 months now and I am sad to say I am worse, not better. Maybe there are things I did wrong. I don't know. :-(

Dechi, during these last 21 months, you did some workout, right?

 

[Lissyleigh]

Obviously I don't know for sure and it probably depends on the individual, but my concern about prolonged rest would be that my muscles and heart might get used to not doing much and struggle even more when some activity is resumed. I have found that when my illness is particularly active (i.e I'm feeling really ill, muscles hurt, heart pounds, or any of those) I rest until I've stabilised a bit, then I resume my normal activities which these days consists of getting dressed, pottering around house, typing, reading etc and having the odd lunch out with friends, this seems to help more than prolonged rest.

 

[Tunguska]

I nearly lost everything left from "banking" on rest. It was the precipitating factor to why I resorted to steroid hormones and opioids - thank **** for those (wouldn't be here). I think chemical help is needed for rest to work right, more than anything - clearly applies to me. After that both rest and exercise are always inverse U curves (obviously-extreme cases aside). I actually have stayed more sedentary than I could probably take for awhile, for survival, but I can tell it's holding some forms of progress back a little. I don't know if you can call any of this remission from anything because I just don't test all the possible symptoms (some aren't the limiting factors for me and so I don't even care and I can pretend they don't exist, and it all works out!).

I think some of what kimsie wrote about ROS can be re-applied to rest itself, at least in some, in part because you can tell from forum posts that some people sleep better from stuff that works by lowering ROS. Sadly I'm not one of them, at least today, I'm just as likely to overdo antioxidants / ROS scavengers.

 

[lauluce]

after 4 years of not working and sleeping 16 hs per day (my CFS symptoms where actually "mild" then, and I was a late teenager so I could afford to not work), I started to work on an 8 our shift and over the period of 5 years my symptoms progressively worsened, and not only that, I started to have POTS (confirmed by tilt table) and a very obvious PEM (confirmed by 2 days exercise test). I believe my case hints to the fact that it's possible to have ME without PEM if it is mild enough, as I lived at least 8 years without it but with pathologically low energy, widespread pain in joints an muscles, cognition issues (specially memory), etc, but I only adquired PEM after 8 years of greatly increased mental and physical activity. I now work at home and my POTS has improved, but the other symptoms remain the same. The worsening I suffered while I excerted myself at that 5 year job, was PERMANENT

 

[Gingergrrl]

In my own case, rest makes no difference. What makes a difference is sitting vs. standing but I realize this probably only applies to me.

 

[Lolo]

Sometimes laying down and doing nothing before going out helps but there has been occasions where I fall asleep and then it's too late to go out or I've lost my motivation.