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Do you struggle with post-exertional malaise?How do you deal wit it!

Discussion in 'General ME/CFS Discussion' started by Mollymolly, Oct 31, 2017.

  1. Mollymolly

    Mollymolly

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    i crash very often,physically and mentally,how do you cope, do you guys take any medication?
     
  2. jpcv

    jpcv Senior Member

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    first of all, try to find out what kind of exertion causes you PEM and try to avoid it as hard as you can.
    Once PEM sttles in, the only ting that has helped me is to rest and wait.
     
    Mary, HowToEscape?, ljimbo423 and 3 others like this.
  3. Alvin2

    Alvin2 If humans were rational...

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    D Ribose and creatine helps taken 5g once a day but is pricey. Up the D Ribose to 15g/day for even better effects, but much more pricey.
    Try to avoid PEM by not doing enough to invoke it, i suspect its repeated PEM ratcheting down our energy production that causes us to get worse. This is only a theory of course.
     
    echobravo likes this.
  4. Diwi9

    Diwi9 Senior Member

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    What @Alvin2 listed plus whey protein/amino acids and rest.
     
    ljimbo423 likes this.
  5. Alvin2

    Alvin2 If humans were rational...

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    Indeed, even trying your suggestion first which can be cheaper.
     
  6. ukxmrv

    ukxmrv Senior Member

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    Lying down or sitting with my legs raised is best for me
    Carntine/ALA supplements help me as well
     
    justy likes this.
  7. echobravo

    echobravo Keep searching, the answer is out there

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    Are there known ways that will help the liver to get rid of lactic acid faster?
     
  8. lnester7

    lnester7 Seven

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    Rest more. Add a nap at noon.
    Going to bed earlier. Even if I don’t sleep I rest completely, dark and not noise.
    Increase mito supplements: coq10, d-ribose, make sure to take ala+alc.
    Avoid noise and too much stimulus
     
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  9. PatJ

    PatJ far and free I gaze

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    The best approach is to avoid pushing outside your energy envelope and inducing PEM. Try to learn your limits and the warning signs that you've done too much and are risking PEM.

    Once you've got PEM then the methods in this PEM-reducing supplements thread may be useful.
     
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  10. Mithriel

    Mithriel Senior Member

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    Heart rate monitoring is recommended by Mark Van Ness and the CPET testing people. There is a lot of information out there. When they tested people using this they found that our aerobic system is broken (some more than others) so we go it anaerobic respiration for the activities of daily life. This is an emergency system which is inefficient and has toxic byproducts.

    My experience may not be applicable to everyone, but years ago I was given a vitamin supplement and I thought I was cured I felt so well. I had 3 days of normal life before I collapsed for a fortnight.

    The next time I felt better was not so good. I was forced to climb a hill to get my son to nursery. I became fitter and felt better, but unknown to me I was actually masking my symptoms and after a few months my legs stopped working and I have only been able to walk a few steps since. (This is also the reason I am wary about GET even if it seems to work for some people)

    If you do find something that works be careful and it may be a lasting improvement for you:)
     
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  11. lafarfelue

    lafarfelue Senior Member

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    I been finding that my POTS is quite tied to my ME/CFS symptoms, and that if I focus on treating/improving my POTS symptoms, then my PEM improves too. But both of them require simply a lot of rest and low stimulation environments. No supplements or meds work to improve/avoid PEM for me without it masking the symptoms and making me feel worse in the longer run.

    (Sorry to not make more sense, I'm at the tail end of a crash at the moment!)
     
    Mary likes this.
  12. Mel9

    Mel9 Senior Member

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    And I would add higher dose of CoQ10 plus some alkalising salts like Basica.
     
  13. Wishful

    Wishful Senior Member

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    My attitude is: 'I know it's going to happen. There's nothing I can do about it. Life sucks.'
     
  14. lior

    lior Senior Member

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    @Wishful I know how you feel. However there IS a certain amount you can affect. Sometimes life sucks but if you look at things from the right angle, you will find goodness too.
     
  15. Alvin2

    Alvin2 If humans were rational...

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    But there is, many things have been suggested
     
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  16. HowToEscape?

    HowToEscape? Senior Member

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    I tried D/ribose with high hopes. It seemed most logical. It did nothing.
    I found nothing that reliably prevents it except and staying home and not doing anything. If it gets bad enough even that doesn’t work.

    As far as recommendations, set an alarm to stop what you’re doing and lie down horizontally before you feel tired. That’s before, not when you are already feeling it. In practice this is hard to pull off. I often don’t follow my own advice because it’s usually not practical to lie down in a public place, and then crash Happens the next day.

    I do find that taking a supplement called MAF 878 which is available from Dr. Enlander increases my crash resistance, though it will not eliminate crashes. But you need to follow all the directions for making it (a pita) and for taking it. If you just have it by itself without the small salad and olive oil mentioned in the directions, it doesn’t work. It takes about a month for the stuff to start working, you won’t feel anything right away.
    I still wonder why D ribose didn’t work. It sounded promising.
     
  17. Wishful

    Wishful Senior Member

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    Alvin2, the problem with 'things that reduce PEM' is that they only seem to work for some people, some of the time, and usually only to some extent. Also, when I read about someone's drug and/or supplement cocktail that 'works for them', I can't help thinking about how similar it sounds to people claiming the same wonderful improvements from magic crystals, homeopathy, etc. Anecdotal claims aren't enough to make me make the effort to try the suggestions. If (whatever suggestion) actually worked somewhat reliably, I expect some researcher would have verified it by now, or at least there would be a lot of members on this forum agreeing that it works well. I don't recall coming across any PEM-reducing suggestion that a majority of people agree works (except for avoiding PEM triggering).

    When I want a PEM-free day, I make the effort to avoid known triggers if I can. Otherwise, I do known PEM-triggering activities fully aware of the consequences. Some activities, such as putting on snow tires, as I did yesterday, just have to be done, even if it makes me feel lousier today.
     
  18. Alvin2

    Alvin2 If humans were rational...

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    I agree but when you conclude nothing can be done and stop trying you won't discover anything. If i had stopped trying then i would not be taking what i am currently on and would not be able to comprehend this conversation at all (my mental function was very bad a while back, approaching vegetable level bad, i'm still ramping up doses and experiencing beneficial and side effects).
    In a bigger picture we have no disease mechanism, if we believe it can't be done then research will be abandoned and we will never have one.
    All that said success is never guaranteed but if you don't try then failure is virtually guaranteed.

    Last point, coincidence is a royal pita to deal with, homeopathy can't help anything except by coincidence or placebo effect.
     
    Mel9 likes this.
  19. Wishful

    Wishful Senior Member

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    I do try things. I've tried quite a lot of things. Some, such as LDN were supported by a significant number of people saying that it worked for them, plus actual research evidence (although not ME/CFS testing). Others things I tried were things that seemed logical to me: immunosuppressants and mitochondrial-influencing compounds. I've just given up on (well, never really got into it) trying things that lack what I consider significant supporting evidence. Yes, that means that I might miss out on something that works, but I'm not willing to spend the effort and money on trying every plant and fungus in the Brazilian Basin just because 'maybe something will help'.

    Of the many things I've tested for my symptoms, I've only found two things that still work reliably, two that I'm not sure still do anything significant, and two that only worked for the first couple of weeks. I'm open to trying things, but I'll wait for convincing evidence. Disappointments are unhealthy.
     
  20. Alvin2

    Alvin2 If humans were rational...

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    This is totally your decision to make and not at all unreasonable, what i am saying is telling others not to try is not a good idea because they may find things that had no effect on you helpful.

    I have also had many disappointments, so now i try strategically, but without the ones i am taking now i would not be typing this and completely unable to leave the house, not that i am great now, i can go out occasionally only and i burn out easily and my mental functioning is still less then a couple years ago.
     
    Mel9 likes this.

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