Sleeping in, sleeping longer and going for shorter walks has improved my symptoms

[daveu]

Hi there,

My name is Dave, here I am introducing myself in the 'Introduce Yourself' section in 2017: http://forums.phoenixrising.me/inde...ring-if-i-should-take-up-running-again.50131/

I was diagnosed with ME in 2009 and had a relapse in 2016. Using this ME Disability Scale: https://www.mesupport.co.uk/index.php?page=m-e-disability-scale my symptoms currently present as "60% moderate symptoms at rest" occasionally improving to 50%.

Since my 2016 relapse my biggest improvements in symptoms have come from 1. starting Amitriptyline (which gives me more restful sleep) and 2. since March 2018 I have began sleeping in, sleeping longer and only walking for 20 minutes a day.

Prior to March 2018 I averaged 7.5 hours sleep a night and I was waking up at 8 AM to an alarm every morning. I was also trying to walk for one hour a day in 30 minute blocks. Since March 2018 I am averaging 8.5 hours sleep a night, sleeping in till I naturally wake up and only walking 20 minutes a day. I have found my symptoms present more mildly if I observe this approach. Now, I had been told years ago not to simply try to "sleep my fatigue away". But honestly I feel a lot better for this approach and I was just wondering if anyone on this forum has any advice about continuing/stopping this approach to sleep?

It is possible that because I changed my exercise routine at the same time the benefits I am seeing is simply a reduction of PEM. I haven't tried going back to 7.5 hours sleep a night/8 AM alarm wake up but keeping the walking reduction to 20 minutes a day, perhaps I should do that?

Thanks

 

[BadBadBear]

Hi Dave, I have found that reduced walking is important for me. The less I do, the better I feel. I range from 40-60% on that scale depending on how things are going.

I live on a farm so there's quite a bit of walking that must be done, but I try to cut out anything extra unless I feel GREAT at the end of the day and then I just take a small walk with the dogs and try to leave some 'gas' in my tank.

I really don't know why you'd cut your sleep back or add in more walking if you are doing better. @heapsreal told me about trying to 'outrest' flare ups, and that's how I've been trying to think of it since then. Every bit of rest is energy savings for immunity and other basic body functions that need done.

 

[Wishful]

I had been doing a daily 45 minute walk. A few weeks ago I doubled it to twice daily, with no worsening of ME symptoms. I did a three-walk day, and also a 3-hr snowshoeing trip through steep hills, also without worsening. I'd say that the 'limited energy' issue doesn't affect all ME victims. Some people will benefit from extra rest and energy management, and some won't. Some may benefit from extra exercise. It's one of those things that we each have to figure out for ourselves by experimenting, and maybe retest once in a while.

 

[Martial]

I had been doing a daily 45 minute walk. A few weeks ago I doubled it to twice daily, with no worsening of ME symptoms. I did a three-walk day, and also a 3-hr snowshoeing trip through steep hills, also without worsening. I'd say that the 'limited energy' issue doesn't affect all ME victims. Some people will benefit from extra rest and energy management, and some won't. Some may benefit from extra exercise. It's one of those things that we each have to figure out for ourselves by experimenting, and maybe retest once in a while.

Wishful I don't mean to take away from anything you said, but do you think its possible you might be dealing with something that might just have some similarities to M.E.? Usually from my understanding one of the biggest issues with M.E. specifically, compared to other illnesses is that physical or mental exertion causes a severe worsening of base line symptoms.

I have lyme disease for example and its different in the sense that my base line of symptoms doesn't seem dependent on energy expenditure, although having less sleep definitely effects me a lot and makes me much more tired by the end of the day. The up and down of my symptoms seem to happen randomly without me "overworking" myself per say. Its just kind of random.

Some Lyme disease patients I talk to get really exhausted and pay for doing too much, but then others are like me, or something else unique too. Not implying you have lyme disease per say. Its just interesting the overlap all these chronic illnesses do to the body, and the limitations they place. And how certain parallels are similar across a set of different illnesses.

 

[Wishful]

I've had plenty of tests for alternatives to ME. I think the part of 'physical or mental exertion causes a severe worsening of base line symptoms' is just a lack of understanding of the different sub-groups of ME/CFS. Mental exertion certainly worsens my baseline symptoms. I'm still suffering elevated symptoms from my trip to town two days ago, which involved dealing with people. Physical exertion triggers my PEM or not, depending on how the muscles are used. My guess is that some people trigger on the immune system activation, and some trigger on the depletion of ATP or whatever from exertion.

I think of ME/CFS as a positive feedback loop that is influenced by a wide range of factors. Some increase the input signals, some increase the gain of the loop, some decrease negative feedback factors. All those factors will give the same output (symptoms). One of these days the researchers are going to announce that they've found the specific chemical that we all have at an abnormal level.

 

[daveu]

@BadBadBear, yes that's what I think. My goal is to minimise the spikes that lead to flareups.