1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Extreme Pacing

Discussion in 'General Treatment' started by Sammy1, Aug 9, 2013.

  1. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Interesting discussion.
    Pacing really works for me. It's the only thing that's ever worked for me, although it's a very slow process to see the benefits.
    With pacing, first of all, it stops me from suffering from constant relapses, and then after a while it leads to my symptoms starting to stabilise, and then after I've experienced some stability, my symptoms start to improve very gradually, as long as I don't experience a bad set-back.

    It has made a major difference to my life, and it massively improves the quality of my life.

    Since I discovered pacing, I've adapted into a form of pacing that I like to call 'intensive resting'. (The name's a bit tongue-in-cheek. :))
    Perhaps it's the same as 'extreme pacing'.
    Basically, it's a very cautious form of pacing.

    I'd never heard of ART (aggressive rest therapy) before now.
    Unlike ART, my version of 'intensive resting' doesn't mean being stuck to a bed or sofa, but it means doing much less than I'd like to. It means that, as long as my symptoms are unstable or causing me trouble, I stay at home as much as possible. I allow myself to do normal low-energy home activities, as long as I feel well enough, including using a computer for long periods of time. But it's very flexible, adaptable and realistic. If I need to do a lot on one day, it's usually safe to do so, as long as it's just one occasion.

    Before I started to do this, my symptoms were wildly unstable, fluctuating severely, always sending me spiralling into long-lasting severe crashes.

    With my form of pacing, I try to get out once every day, as long as I feel well enough (as long it's fairly comfortable for me) for at least one short walk.
    I believe that one outing a day keeps me connected to the outside world, keeps me in the world of the living, gives me a daily aim, and stops my fitness deteriorating. Well, I just find it generally healthy to get out once a day, even if it's only to the local corner shop.

    When I start to improve, then I start to increase my ambitions.

    This approach to managing symptoms seems to work for me.


    I've never understood the percentage rules for pacing: I don't find them intuitive or helpful.

    Probably because I don't monitor my 'energy' levels. I monitor my levels of symptoms. So the percentage rules don't mean anything to me. When my body or brain starts feeling fatigued or painful, then I slow down, or stop.

    I think that many clinicians advocate a 50% rule, and say that 70% is too high.
    I'm more comfortable with a 50% rule than a 70% rule, because it just means do half as much as you think you can.
    And many say always do less than 50% - the more caution the better.
    But it's just a guide, and I think people must learn what works for them.


    That's how I play it... All activities have got to feel fairly comfortable... Once I start getting tired or experiencing pain, then I stop.

    I like to live my life with the most minimal symptoms because this massively improves my quality of life, but this means less activity. Whereas, it suits others to do more activity but with the unwelcome payback of increased symptoms.
    Sammy1 and peggy-sue like this.
  2. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I suppose you and I are operating on fairly similar principles, Bob.
    I don't get out every day, normally only 3-4 times a week, but if the weather is nice, I'll do a couple of laps of the back garden.

    I do feel it's important not to get into payback in the first place - otherwise you're just doing 2 steps forward for every 3 you go back, you can give up on any idea of overall improvement if you keep on doing the boom-bust cycle, but just sometimes, doing something really special is worth it. :p
    Bob likes this.
  3. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I've just done something really special - and it WAS worth it! :thumbsup:
    I had 4 days holiday with loads and loads of family and friends in Eire.:angel:
    But I'm back in that invisible lake of treacle right now. :cautious:
    Bob likes this.
  4. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    peggy sue and Bob: how long have you used your current pacing principals? Do you ever experience any major setbacks/PEM using your versions of pacing? Are you still making overall improvements?
  5. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    Using my version, no, I do not experience major setbacks, I don't get PEM when I'm using them, I do get slow and gradual improvements.

    However, life has it's own way of interfering, I have had very major setbacks when I have been pushed and had to do too much. I do get PEM when I overdo things.
  6. Bob

    Bob

    Messages:
    8,132
    Likes:
    10,481
    England, UK
    Hi Sammy, it seems that I have very similar experiences to Peggy-Sue.

    Before I practised pacing, my symptoms were extremely unstable, and I'd get severe flare-ups really easily.
    After I discovered pacing, I stopped experiencing major flare-ups, and this gradually led to my symptoms stabilising, but it took ages (a year or two) for my baseline symptoms to start improving very gradually.

    I've been ill for 9 years, and have been pacing for 6 or 7 years (I can't remember exactly how long it took me to discover pacing.) I learned to adapt it to my own version of pacing fairly quickly, because I quickly noticed that pacing was very helpful for me.

    I recently had a very good period of two or three years, during which time I continued to gradually improve, and I didn't experience any significant set-backs or relapses.
    I was beginning to stretch myself in terms of physical activity, and starting to engage in a few normal activities again.

    During this time, as long as I was pacing, I didn't experience any serious setbacks. But I easily became very fatigued during a day, especially if I stretched myself. But the symptoms quickly eased up after a night's rest, or sometimes a bit of a longer rest.


    But then, feeling relatively well, and in a very good mood about feeling well, and feeling far too optimistic, I massively overstretched myself and experienced a huge major massive relapse.
    But this was entirely because I had stupidly (metaphorically) thrown away the pacing booklet, and temporarily thought I was superman.
    That relapse was about 5 months ago, and the symptoms are only just starting to stabilise again for me.
  7. Sammy1

    Sammy1

    Messages:
    26
    Likes:
    12
    Norway
    My experiences of pacing are similar to both of yours. First my ME was stabilized then a slow process of improvement begun. I haven't had PEM for over a year and I enjoy living now. I don't know if I'll ever reach full remission with the current speed of improvement but there is no alternative at the moment.

    In addition I have to admit that exercising strict pacing hasn't been a "walk in the park" for me (maybe not the best metaphor to use in this forum). I lived a very isolated life style over a long time and that was extremely challenging psychologically. But it paid of well and now I feel it was worth every single lonely second.
    peggy-sue and Bob like this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,558
    Likes:
    1,902
    Midwest, USA
    I wonder if doing extreme pacing/Aggressive Rest Therapy along with any other treatment would make that treatment more successful?
  9. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    It should certainly be treated as a confounding variable if somebody was using this strategy.
  10. maryb

    maryb iherb code TAK122

    Messages:
    2,814
    Likes:
    1,921
    UK
    @Valentijn
    which pulse oximeter did you get, is it good? think I need one - my heart rate in the 100s since starting on thyrod meds.........
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,334
    Likes:
    9,094
    Amersfoort, Netherlands
    Mine is Contec brand.
  12. maryb

    maryb iherb code TAK122

    Messages:
    2,814
    Likes:
    1,921
    UK

See more popular forum discussions.

Share This Page