The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

PEM and pacing

Discussion in 'General ME/CFS Discussion' started by jleblanc3, Sep 27, 2017.

  1. jleblanc3

    jleblanc3

    Messages:
    4
    Likes:
    6
    I have been trying to pacey day a bit better after new ME diagnosis but I just can't seem to wrap my head around what is harmful and a setback and what I should push through. At the moment I am having slight PEM after getting up to do slight activity preceded by myalgias in my arms and legs. The PEM doesn't seem to last long but I still feel like it's a setback. Should I be resting more so that I don't have PEMS after simple activities....I have been a bit better than I am now but felt like I have been over exerting myself with too long of social visits and emotional challenges. Any advice would be well received from your experiences. I am just a little worried. Thank you.
     
  2. MastBCrazy

    MastBCrazy

    Messages:
    63
    Likes:
    158
    Toronto, ON
    If you don't want PEM, don't push through. Don't worry, there will be many occasions when you will decide to push through, fully acknowledging the perceived price.

    IMHO, (and personal, objective, documented daily experience), pushing through has only made things worse - banked stamina spent and PEM, and sometimes increased symptoms too. And moreover, the actual price of the over exertion can far exceed what I predicted. It has occasionally welcomed me to a crash and extended decrease in function.

    Learn to listen to your body (mental/muscle fatigue, weakness, slowed responsiveness, tremors, twitches, spasms) and honor what it tells you, think about the information it tells you, act with intention. Acts might include: stop, get help, lie down, rest, remove stimulii, add nourishment/medication, document symptom, etc. At that point only, do I 'dismiss' the signal.

    As for pacing, the hard aspect is the 'unexpected'. A conversation is longer, or more emotionally charged than you had energy available... And that is why it is important to stop short and bank the rest (otherwise there's never anything in the bank).
     
    ahmo, ladycatlover, Mary and 9 others like this.
  3. lafarfelue

    lafarfelue Senior Member

    Messages:
    132
    Likes:
    469
    Australia
    MastBCrazy, ladycatlover and ghosalb like this.
  4. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,528
    Germany
  5. tudiemoore

    tudiemoore Senior Member

    Messages:
    133
    Likes:
    315
    Southeast U.S.
    Pushing through--the trite saying--"Have to learn the hard way" led to such physical, as well heightened mental and emotional exhaustion, that I lost inhibitions about giving in and giving up.
    Especially a few experiences were vivid in my mind.

    I still don't pace well but am learning after so many years.

    Telling myself, or any people I am with, that I have to sit down, lay down, or leave is yet another of the
    gifts of ME/CFS, sadly.
    Or least to me--
    tm
     
  6. Wonko

    Wonko Senior Member

    Messages:
    1,425
    Likes:
    4,646
    The other side.
    Pacing...tricky one.

    Things I've learnt, that I can remember right now (not the same thing at all)

    You cannot "bank" energy, it may feel like this is what you're doing (it did to me for years) but my experience suggests that all that's happening is a restoration to baseline, once you reach baseline then all the rest in the world won't affect/increase what you can do the next day without PEM being triggered. As severity increases and baseline drops it becomes more obvious that this is what is happening.

    You will need to do things that trigger PEM (depending upon your severity), it's unavoidable, the trick is to do it as little as possible and try and avoid anything that would trigger PEM if already PEM'd, as this can lead to a downward spiral, where resources drop so low everything triggers PEM, recovery from this situation is difficult once it has progressed, so best to avoid, you're not going to be any use to yourself, or others, if this happens, so literally everything should be dropped to avoid it.

    I rapidly reach a point where I become physically and mentally incompetent if I try and operate beyond my current capabilities. This is often not at all obvious to me in real time. I can spend spoons like mad and actually make the situation worse, not achieving what I wanted to in any way, taking valuable resources up for no, even negative, gain.There are times, a lot of times, where it is completely pointless to persist, take the hint a screw up is giving you about your current abilities and stop, before things get worse and you both spend the energy you need to make that bowl of cereal and get hammered the next day, or the next. Pushing through is mainly unproductive, it doesn't even achieve the aim at the time, it doesn't often work.

    Beyond that, if you want to do something, and you're prepared for the consequences, you know the penalty, go for it. It's your suffering, own it ;)
     
  7. Vonjones

    Vonjones

    Messages:
    25
    Likes:
    129
    Gloucestershire
    When first ill I found it hard to work out why sometimes I was ok and other times not as I could get out to shops for an hour then, but found the worst crashes corresponded with when I had remained standing still eg talking to friend. Crashed badly standing too long and been severe ever since.
     
  8. Keela Too

    Keela Too Sally Burch

    Messages:
    882
    Likes:
    3,928
    N.Ireland
    I don't write on my blog so often these days, but I have been told that posts I've written on pacing issues have been helpful. None are very long, as I find long posts difficult! :p The most popular ones are linked on my blog index here: http://sallyjustme.blogspot.co.uk/2014/08/index.html
     
  9. NelliePledge

    NelliePledge plodder

    Messages:
    698
    Likes:
    3,234
    yes the one about disposable energy is great and a good one to help try to get the message over to friends & family as well
     
    ladycatlover, Keela Too and Vonjones like this.
  10. NelliePledge

    NelliePledge plodder

    Messages:
    698
    Likes:
    3,234
    I try to only deliberately do things that I know will cause PEM that are top priority - either anything to do with health appointments or important family occasions, important occasions with friends
    anything else even important stuff such as my part time work, going to see my football team doesnt happen if Im not well enough and know if I do it it will set me back. Things that ive done in the last 12 month knowing it will have an impact are travelling to my sibling's birthday meal, travelling to visit relatives for an annual get together, minor surgery, dental treatment, meeting up for the day with friends one of whom has cancer, travelling for Christmas family get together, funeral of another friend

    I think there are different levels of pacing one is at the high level of over a week or a month how do you space out activities so you dont overcommit yourself. Another is during a day how do you manage activities, this is totally down to individual circumstances. If you live on your own like me and spend a lot of time indoors on your own you dont have to worry about getting your own space/being able to rest as it is not constrained. But your social interaction is limited so it is important to find ways of connecting with people regularly. Thats why PR is great - on the other hand it is quite easy to forget the energy that demands and running up a lot of time online. I find the pacing over a day a lot harder than the higher level diary management aspect. Im not good at sticking to a routine and it does seem to take away one of the positives about living alone which is being able to suit yourself.
     
    ladycatlover, Mary, Vonjones and 2 others like this.
  11. Vonjones

    Vonjones

    Messages:
    25
    Likes:
    129
    Gloucestershire
    So do I, but hard when I live 200 miles frm close family and old friends, so they need to plan travel in busy lives and stay overnight. Am housebound so choice between crash or never seeing them.
     
  12. NelliePledge

    NelliePledge plodder

    Messages:
    698
    Likes:
    3,234
    oh that must be tough I live 50 miles from one lot of family and friends and 120 miles from another relative
    a couple of local friends but they work so hard they might as well be 50 miles away for how easy it is to get to see them
     
    ladycatlover and Vonjones like this.
  13. jleblanc3

    jleblanc3

    Messages:
    4
    Likes:
    6
    With good pacing techniques is it possible to improve your baseline or is that out of reach? It's only been 6 months for me since onset of symptoms and before I realised what I had I already pushed myself to being housebound with minimal activity. Gah. I've been able to get out of one crash and returned to baseline but have again pushed it a little too much and trying to crawl to baseline again. I'm just hoping for someone to shed some optimism if possible.
     
    ladycatlover likes this.
  14. Wonko

    Wonko Senior Member

    Messages:
    1,425
    Likes:
    4,646
    The other side.
    People do improve, people go into remission, it happens. Common wisdom, and personal experience, suggest that a good way to stop it happening is too push too hard, but this doesn't mean that if you don't you will automatically go into remission, or improve beyond whatever your baseline is currently.

    I have no idea if it is possible, through pacing alone, to improve your baseline, I live on my own and have never had the luxury of being able to strictly pace as required, stuffs got to be done to meet my basic needs and I'm the only one available to do it. So, over the years my baseline has dropped, considerably.

    This puzzles me.
    M.E. PEM is normally delayed, by at least 24 hours, normally lasts longer than you're describing, and tends to involve more than muscle pain.

    But, you're only 6 months in, I really can't remember that far back.

    The internet would suggest your chances of recovery, provided you don't push it, are reasonable.
     
  15. jaybird1

    jaybird1

    Messages:
    35
    Likes:
    244
    Yes you can improve baseline; PEM is sadly a given but eventually your stamina improves and you can do a little more. I was in a fortunate position of not having to work so no pressure from that so could pace. Nearly four years from onset I walked 2.5 miles this week (didn’t plan too.....but what I thought was a short journey became much longer!) BUT I’ve paid for it since with muscle pain etc. So pleased to have done it but frustrated that success is tarnished by the payback.
     
  16. Keela Too

    Keela Too Sally Burch

    Messages:
    882
    Likes:
    3,928
    N.Ireland
    I think you need to be careful. Your baseline can change either up or down, so sometimes aiming to "get back to baseline" can, if your baseline has lowered, actually mean you exert yourself above what your body can cope with.

    I was never able to increase my overall abilities by my own efforts to pace - or whatever. As I see it pacing is an attempt to prevent further damage, and a means of giving the body the rest it needs to perhaps heal some. If you are fortunate you may find your baseline improves with good pacing, but it is not a given in my experience.

    I was fortunate however to have my abilities altered by taking an off-label anti-retroviral drug for a year. I'm not cured by any means, but certainly well improved from my lowest point in late 2015. I think "partial remission" is a good phrase to use here.

    I know you want optimism - but I have found that being too optimistic about ability means that there is a temptation to push on too much. I think realism is a better thing. xx
     
  17. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    Pacing has never increased my baseline energy envelope either. It does help me avoid crashing though, which is very important. But I can never do more no matter how much I pace myself.

    Would you mind sharing what off-label anti-retroviral drug you used?
     
  18. Keela Too

    Keela Too Sally Burch

    Messages:
    882
    Likes:
    3,928
    N.Ireland
    Okay this goes with a disclaimer:
    I am not medically qualified. Make of this what you will, but the following account is not medical advice.
    I am not recommending any form of treatment, only telling my story as it happened to me.
    I am just one person and, in terms of progressing knowledge, this story is only an anecdote.


    So, I was on Viread, also known as Tenofovir for a year starting in late 2015. (I think this is the first time I've actually said this out loud in a public space, although there are probably a good few folk who know this already.)

    Taking Viread requires regular kidney function tests, so needs to be medically supervised. I understand it has not yet undergone any formal trials in the context of ME, but that it has been approved for use in AIDS.

    I have now been off Viread for almost a year, and with a few ups and downs, I have pretty much held the gains I achieved during that treatment year.

    It took about 4 months on Viread for any changes to become apparent, but then I had a rapid increase in ability over a couple of weeks followed by much slower gains with some bumps along the way until the 10 month point. My physical ability peaked at about 10 months after which I had some decline. That decline appeared to be halted when I stopped the drug at 12 months.

    I know of some others that Viread has worked for, but also those for whom it has given no benefit whatsoever. I did not combine it with any other drug, although from about 6 months in I took sodium bicarbonate to counter acid accumulation in my muscles.

    Viread has not restored me to my previous level of health, but I now have much greater flexibility in what I can do, mostly due to a greatly reduced PEM response (although that has not gone entirely). Nor has my aerobic capacity returned to previous levels. I can now walk a reasonable amount, eg when shopping, but only by taking it slowly. No stomping along in a constant hurry as used to be my norm.

    I should say I was horizontal most of everyday prior to treatment, and was slowly declining year on year - despite my efforts to pace carefully. For the 3 years prior to treatment starting, I was only able to leave the house using a mobility scooter, or wheelchair. My illness onset was in early 2012.

    Why it helped me and not others is a mystery. I was one of the lucky ones it seems. I was also fortunate to have the means to pay for this treatment privately.

    I know folk might think I should be actively promoting Viread as a treatment, but it's not so simple: I had some reactions along the way - such as increased migraine episodes - and I know others who had bad responses too. Although it feels like a miracle to me, it is not a miracle cure for all with ME.

    Earlier this year I wrote a blogpost about my improvements - It was in the context of NOT needing any form of graded exercise therapy in order to take up my new found energy levels:

    http://sallyjustme.blogspot.co.uk/2017/02/get-out.html

    I hope that helps a bit.
     
  19. jleblanc3

    jleblanc3

    Messages:
    4
    Likes:
    6
    Thank you for sharing Keela Too.

    I want to describe a situation/feeling and was hoping that some of you might be able to interpret and help me troubleshoot what it may be.

    So this morning I got up (slept 5 hours with sleep meds) and had breakfast with my wife and daughter before school, got dressed and joined everyone for a drop off to school. I felt fine this morning except for some muscle soreness (different from the neuropathoc burning pain that I normally experience and would normally call myalgias) but in the vehicle at school I had a tingling sensation that started in my arms and seemed to go through my body in a wave. It left behind fatigue with no real worsening of symptoms because I am now at home and it has passed and I am abe to write this post, read and concentrate and don't feel the residual effects of the mornings fatigue.

    My first question is: Is what I am experiencing a PEM and can it onset that quickly and dissipate that quickly? I feel a little fatigued from it but not absolutely zapped. My understanding is that they are usually delayed but this seemed to be shortly after activity.

    My second question is: What should I do in regards to activity for the rest of the day? Not looking for specifics here but just looking for a "you need to rest" or "proceed with caution". I am really finding it hard to find my energy envelope, if you will, and I am not really good at interpreting my current symptoms/symptom flares very well.

    Yesterday, I also had a similar fatigue flare/PEM experience/whatever but after a phone call and some texting my neuro symptoms became more apparent (sensitivity to llight and sound and easly triggered brain fog). Once the neuro symptoms flare the pain and fatigue disappear. That is very bizarre to me. Does anyone else experience that sort of Symptom Switching? That seems to tell me that this is more of a central problem rather than systemic.....but I'm new at this so I have no idea.

    I am trying to find a balance between activity and making things worse. In people's experience what would be your recommendations? Thank you all so very much for taking the time to respond. I am certainly learning alot and it's very overwhelming and scary.

    Josh
     
    lafarfelue and Wonko like this.
  20. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    @Keela Too - thanks so much for your very detailed reply! I really appreciate it. :thumbsup: I'll take a look at your blogpost too. (And glad to hear you didn't need GET to use your newfound energy ;))

    eta: I just read your blog - really well done. As you say, the problem is not our failure to increase exertion but rather failure to limit what we do. None of us do too little!
     
    Last edited: Sep 29, 2017

See more popular forum discussions.

Share This Page