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Do you get PEM from exertion while laying down? (POLL)

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Valentijn, May 16, 2013.

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Do you still experience PEM as a result of activity done while laying down?

  1. Yes - Just the same as if I were standing.

    5 vote(s)
    27.8%
  2. Yes - But the PEM isn't as bad as it would be if I'd been standing during the exertion.

    5 vote(s)
    27.8%
  3. Yes - But I can do more activity laying down before PEM hits, compared to standing.

    5 vote(s)
    27.8%
  4. No - Activity while laying down doesn't trigger any PEM symptoms for me.

    4 vote(s)
    22.2%
  5. I don't know - and I'm not going to risk a crash to find out!

    1 vote(s)
    5.6%
Multiple votes are allowed.
  1. Valentijn

    Valentijn Activity Level: 3

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    Hopefully the title is pretty self-explanatory :p I do get PEM from exertion while laying down, but some people don't ... so I'm curious to see what the general experience is.

    Also, links to any research in this area would be great, if anyone knows of any.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I like the last option!

    I get PEM from mental exertion while lying down just as much as if I were sitting, but can do more physical exercise lying down than standing up (pilates with machines).

    We are weird!

    Sushi
     
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  3. Allyson

    Allyson *****

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    if you are referring to my post about PEM bing caused by being upright - i do not mean just lying down and doing the exercise will not cause any PEM

    what i mean is that many of the symptoms of PEM may be due to being upright rather that just the exertion

    i notice if i stay in bed for a few weeks my symptoms dissipate

    but if i am up - even with NO exertion I will crash

    so this poll is not going to address the point i am makinng - you woud need to rest the peole horizontal for a few weeks THEN do the exercise lyig down

    as it is you cnanot compare - eg i go to a yoga class and do it all lyig down - BUT i drive to the claass, queue at the desk, wait standing for the class and drive home - so even if i do the whole class recumbant i am still spending an hour that day upright - so that does not address the point i am trying to raise and this poll will not answer it..

    also you need to control for factors like heat, compression clothing, fluid intake, electroytes etc so they are the same for each group if you want to compare results.

    Otherwise the question has no scientific validiety - though it is a good question.


    A
     
  4. Valentijn

    Valentijn Activity Level: 3

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    In my case I notice a distinct difference between PEM and OI symptoms - namely, the OI hits immediately, whereas the PEM is a delayed effect. OI symptoms go away after an hour or so of laying down, whereas PEM sticks with me for days.

    In very extreme causes (completely bedbound) it might be possible that being upright is itself capable of triggering a full-on crash - being upright is exertion, after all. Muscles are used to maintain posture, the heart works harder to pump blood, etc. But a crash triggered from being upright would still be quite different from standard OI symptoms.

    Another thing to consider with staying in bed - you aren't using your muscles. They have time to recover a bit and build up energy stores. My experience has been that after extensive bed or couch rest my threshold for triggering PEM is temporarily raised - but then the energy stores (or whatever) are depleted and things go back to normal.

    In any case, I would think that the ability to engage in activity while laying down, without repercussions, would distinguish ME from some other diseases which also feature OI.
     
    ahimsa likes this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    It depends. A combination of all the options, but I picked the best one.
     
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  6. Sparrow

    Sparrow Senior Member

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    I do tend to be able to do more lying down than I could standing before PEM is triggered, but that's only because since my heart rate is so high standing up, there's a pile of extra exertion involved. If I got my heart rate that high lying down, the amount of PEM would be the same.

    It's not the lying or standing that makes a difference for me. Just the amount of exertion.
     
    Valentijn likes this.
  7. L'engle

    L'engle moderate ME

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    I think there is less danger of overdoing when lying down. Since you aren't putting the energy into staying up right, there is less to distract you from realizing it is time to stop, and also then all you have to do is stop the activity and lie there rather than expending the energy deciding where to go to rest and getting there. So it seems lower risk. I can still make my self sick and have a headache from studying in bed but I think the effect is less severe than when in an upright posture.
     
    Valentijn likes this.
  8. Valentijn

    Valentijn Activity Level: 3

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    Good point ... I can get pretty stupid when the OI has kicked in :p Usually other people then have to tell me stop what I'm doing and go rest.
     
    L'engle likes this.
  9. taniaaust1

    taniaaust1

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    Allyson. Ive spent months being able to do nothing but be laying down unable to be on feet at all, 9mths bedbound at one point, couldnt even walk to the loo. I can say that I still got PEM while laying down.. just trying to feed myself would pem me (note my daughter was bringing me food as i couldnt get out of bed so i wasnt getting up to get it). Yes laying does help when Im less sick and not permanently stuck there but it certainly doesnt stop my bodies issues even with long term laying, I will still PEM with activities even with long term laying.

    ME has affected my mitochondria eg with laying in bed trying to draw too long or do anything with my hands for long..they can still completely burn out in a way in which has nothing to do with being upright as I can say from my past experience of peming still while completely bedbound.

    Yes orthostatic issues featture strongly for me too but mito issues seem to be there too, unrelated to the orthostatic ones. I know Im certainly not the only person who has been long term bedbound who has found that PEM even then still occurs. Many bedbound ME patients cant even brush their hair in bed while laying down as it causes severe PEM.
     
    Valentijn likes this.
  10. taniaaust1

    taniaaust1

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    Same here Valentijn.. Ive come to know how to tell the difference between what Ive caused throu OI and what Ive caused throu PEM. Even the symptom complex comes in a little differently eg different sort of headache etc.

    I have noticed that even if not doing something OI can also cause a delayed PEM next day reaction if Im upright too long even without activity (that's something which took me over 10 years to realise). I only thou get the PEM from the OI if I ignore the OI too long when I have it. Ive learnt to well manage my OI and know when I need to lay to avoid PEM (issue is I dont always get to do that thou).

    Its all more complex then the above thou.
    Another thing Ive found is the OI can also help stop PEM (so not just can cause it, it can work the other way and help prevent). When my POTS is severe and almost immediate on standing, say leaving me unable to stand for more then 40 seconds or so.. it makes it harder for me to get PEM as then my activities are severely restricted, by lack of being able to stand in which case I'd have to over do them in bed to get PEM but IF my ME generally is doing better while my POTS has gone more severe.. I dont then get PEM in bed. There was a time in which PEM was nearly impossible for me to get due to severe POTS.

    So i think the whole thing depends on the balance of the persons severity of their general ME symptoms at the time compared with their OI degree at the time.
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I find a big difference in OI symptoms and PEM symptoms. For me PEM is always delayed and takes much longer to resolve while OI symptoms resolve by getting horizontal for an hour or so. OI symptoms are much less "whole-body" for me than PEM.

    Sushi
     
  12. Allyson

    Allyson *****

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    for me i find the worse thikg to do is something like satic standing poses in yoga - throw in a hot room and will be very ll afterwards
    the best thing is something recumbent like, as Sushi says, pilates lyig down, or aqua aerobics - that always makes me sleep well too if i do it in the evenings.
    Dr Don LEwis - one of the authore sof the 2011 international consensus critereia explains in his book that part of the reaon for that is that it forces fluid form you lymphatc system into your bloodstream , thus boosting venous blood volume. I also think the cool water helps keep you cool when you might otherwise heat up during exercise.

    I now take a chillow - and iced watr to the gym in case the fan or aricon is not enough. I think this helps; i would like to see some studeis done inot it though.


    A
     
  13. Allyson

    Allyson *****

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    Oh forgot to add yes i think there is a dieffernce between PEM and OI symptoms - so OI sympotms would be helped by this; not sure about PEM and have not been well enought o test it lately; i will keep an eye out in future. I thinnk that is something that is not differntiated enough - ie how much Oi nad how much PEM contributes to our symptoms

    For example if i go for a longish slow walk - half to one hour - i will certainnly crash next day but will NOt have PEM form that usually.



    A
     
  14. ukxmrv

    ukxmrv Senior Member

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    My Post exertional symptoms always include a sore throat and glands so I am assuming that I am seeing either the immune activation that the Light's and others talk about.

    I don't get this with my POTs. The POTs for me is immediate and is also resolved by lying down.

    Dr Ramsay spoke about the post exertional feature of his original ME patients and this was through what he described as a trivial amount of exercise.

    For me, lying down exercise is just as bad. I've tried the plates and the "passive" exercise machine. Exercise in water and had a tutor at home for lying down yoga. I do agree that I can do a little bit more at the time because the added burden of fighting to stand up isn't there. So for example doing a yoga pose in a prone position to a standing one. However, the PEM malaise still kicks in afterwards and for days or weeks in bad cases.

    Have any of you connected this to the "exercise within your heart rate" regime that Dr Klimas was on about?
     
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  15. Allyson

    Allyson *****

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    interestiing thanks X

    seems we are all a litte different.


    I am not aware of DR Klimas' heart rate regime - but that sounds sensible as i know 10 mins of cardio will put me on the floor every time.

    Are you able to post more details of it please?/

    Thanks if so

    Ally
     
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Isn't crashing the next day, by definition, post-exertional malaise?

    I get PEM from reading while lying down. I do not exert myself physically while lying down, so cannot answer to that.

    I do not have IO, but I still get PEM from standing too long. I have a stool to sit on while doing things in my kitchen.
     
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  17. Allyson

    Allyson *****

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    Hi Little Bluestme - good point.

    But not for me

    for me PEM is muscle aches and pains and other symptoms and often does not start till 24 hours after the exercise; i is quite distincitv eand lasts a few day s usually - 3- 4

    for me this differs fform a crash which can come on at any time it seems - brain fog , feel unweel ..
    nnot sure it the two have been separated or stidied separately but i ge a differetn reaction and kind of malaes after exercise thatn i do inn a "normal crash" which has degrees of seveity

    if they are the same thin g why od we have the two didfferetn terms?

    Symptom flare is another term i have seen used.

    maybe PEM is seer crash ;us muscle pains

    coconnut water will help me out of normal crash quicly but not out of PEM - and it never respoves the muscle pain.

    cheers

    Ally
     
  18. Valentijn

    Valentijn Activity Level: 3

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    What you refer to as a "crash" is OI. I think most ME patients use "crash" to refer to the onset of PEM.
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    It's something I want to try sometime. But I have trouble with standard heart rate monitors, because the contact has to stay wet (usually from sweat) to keep getting readings. And if I'm working hard enough to sweat, I'm way past my limit of triggering PEM already :p

    There are wrist units available now which measure heart rate based on "visually" detecting changes in heart rate via the wrist veins/arteries(?). They have a general fault in that arm movements will disrupt readings, but that might not be a problem for non-vigorous use. There's also new ones which add in motion sensors to help ignore input generated from movement, so that only the heart rate is left, but those are hella expensive thus far.
     
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  20. Allyson

    Allyson *****

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    also sorry i f i have said this before - foggy today

    but how you kow any post effects are from the exertion or from other upright time ... eg walking round the house, getting your pill s out ( 30 mins) sitting up reading etc.... unless you monitor it or stay ndown all the time you cannot really tell what causes what IMO


    just being upright doing mundane things will make me ill

    the more I stay lying down the better

    but to compare the two you would eed to hav ethe much desired servant for a week or two

    would be agood research experiment - also to help differentiate PEM from crashes..


    A
     

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