PEM recovery tips



  • Hi @river. Not directly a PEM aid but I can relate to the hunger and thirst with PEM. Thirst is a big problem for me (on a good day I seem to need at least 4L and on a bad day it just goes up from there). But because of the need to drink so much water, one thing I found necessary was ensuring that I also had enough electrolytes and didn't, I guess, get too diluted (hmm not the most scientific explanation haha). I use both electrolyte tablets and sports drinks for this.

    When you mentioned appetite too I instantly thought of the nutritional supplement drinks that I also started recently and seem to be helping. I use Ensure (there are lots of others out there) and it's supposed to be a complete nutritional meal replacement (I just get it from Chemist Warehouse) and use it to help make sure I keep food intake balanced and stop any weight loss. It's also great for those really bad days when making/eating a meal becomes impossible and you need something easy.



  • @Katt yes nutritional supplements are great! I use Sustagen and it's very useful when I'm too nauseous to eat solid food or having bad gastric motility issues. But I want to try some other brands because I find it kinda gross. (Maybe they're all gross?!) Recently I found some lovely chocolate milks that come in small cartons with straws, which are tastier than Sustagen and I can drink them lying down. You can get juices in that format as well.

    I try to drink electrolytes as well, but I find that on bad days I seem incapable of retaining fluids, even with heaps of salt added. I just pee them out instantly. I'm hoping to discuss this with my cardiologist soon because there are some medications that can help with fluid retention.


  • Community Moderator

    Ah, the joy of PEM! Great thread 🙂 I'm afraid I don't have any great techniques - the things I do in terms of day-to-day maximising of capacity seem to be the things for PEM, but PEM needs a lot more rest. I take ubiquinol, and have found it useful for brain fog and somewhat for energy (I've come off it a couple of times to see if it was a noticeable drop in function and it was), but that's a day-to-day thing.

    I find PEM can increase pain levels, which can increase sleep disruption, so if it's feasible, I might take something for pain at night (usually mid-way through the night, to cover the second half) to improve the quality of sleep, which seems to have a mild impact on recovery.

    Beyond that, though, I just have to rely on resting hard, and waiting it out.

    @Katt I used to drink a lot of water (4-5L - down to about 2.8L now as doc wanted me to try stepping down, and it seems to be manageable at about this - much lower and I get worsened symptoms) - Doc's concern was about drinking too much, and in the reading I did (which was just "general Googling", so don't put too much weight on it, apparently our bodies can only clear about a litre an hour - 4L over a day is well below this of course, but just mentioning it in case it's useful info in terms of not drinking more than that in a short period of time.



  • @river Yeah I don't think any of the nutritional supplements are particularly nice. One of my recent purchases that I am loving though is a small easy to use (and clean) blender. A morning smoothies with vanilla supplement powder, banana, frozen raspberries+blueberries and D-Ribose is now my standard breakfast 🙂



  • @Daffy_Dave thanks for the info. I had been told the same thing by my doctor and though I've tried repeatedly to reduce fluid intake any less seems to just cause horrible sore throat and pounding headaches (basically symptoms of dehydration). I think I read on other forums that thirst can be a common symptom for many of us, though not sure I ever read any scientific explanation of why (but like with everything else I guess it's just another unknown). Glad you've managed to get yours down to 2.8L though!



  • I haven't found anything yet that speeds up the recovery from PEM. It seems that once my body goes into a crash it's on it's own time frame and nothing I do or don't do brings me out of the crash faster. I still haven't been able to work out why some crashes may only last a few days whilst another will have me bedridden for weeks.

    I've had no luck with ubiquinol or D-ribose in the past. Glad that it helps for some of you.



  • @Katt I got one of those blenders too! You've inspired me to use it this morning, I hadn't thought of putting my ribose in it



  • @river When your lying there like a fish out of water, it doesn't seem anything will alleviate the symptoms. The only thing I feel I have is my imagination. Although the good old jelly and ice-cream tradition is still a favourite of mine.🤓



  • I'm really interested in chatting about this.

    @river and I briefly noted PEM in a different thread, and I know @river you experience it as a central part of your ME/CFS.

    I'll count myself lucky - it has not been a part of my general situation for a long time. It was in the past. It is on generally rare occasions. But most of the time not, and I'll potentially explain that more at some point.

    I am keen to understand it in others more.
    I see myself as a thinker, and I like to solve puzzles ...

    Towards that, and as an entry reflection for myself, I'll note it interesting ...

    that this website: https://me-pedia.org/wiki/Post-exertional_malaise describes PEM as a "hallmark symptom" of ME/CFS,

    whilst this website https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
    says that "the main symptom of CFS/ME is feeling extremely tired and generally unwell" which to me is a similar but different thing - a more overarching thing.
    After listing 8 subset symptoms, it then says "Most people find overexercising makes their symptoms worse" - which I think is getting at the PEM.

    I mean no great statement from this. I'm just interested that, for some, it is central, and genuinely so.
    And in others it is not as central. It is a thing to be alert to, but it is a part of a broader landscape.
    Again, neither is right or wrong. But it is something I will try and think about ... see if I can get a better understanding of.

    That's probably enough bulk to this email.
    I will finish with a final couple of questions I'm considering ...

    • what is a more detailed description of the malaise?
    • is the malaise generally the same, or will different exertions give rise to different malaises?

    thanks for bearing with me folks,
    regards
    Paul.



  • @PaulB for me - different exertions definitely given rise to different malaises.

    Cognitive exertion = insta-PEM. It can be crushing, nauseating, syncope-inducing, especially if I try to push through the onset. If I've only overdone it a little bit cognitively, sometimes this can be temporarily reversed by immediately lying down with my legs elevated (to promote blood flow to the head) and hydrating well. But it'll catch up to me in the end and result in multi-week-long insomnia, headaches, brain fog and fatigue.

    Physical exertion = delayed PEM. The delay used to be about 24-48 hours but recently, I assume due to some new supplements, it's been more on the order of several weeks which gets very confusing. The last time I had an obvious episode of physically induced PEM was after showering. I felt fine, just a little hot and sweaty afterwards.. But woke up the next morning feeling like I'd been hit by a truck. I recovered in a few days with aggressive rest, thanks to new meds.

    I wonder if PEM plays less of a role in patients whose baseline severity is higher? If you're already at rock bottom, it's hard to get worse!



  • @river OK, the scientist in me has follow up questions 🙂

    I wonder if building capacity / tolerance is a thing PEM sufferers can explore. I suppose this is what the whole of pacing is getting at - but I was a little turned off that field of discussion given the controversies of the British origin story of it.
    So, I'm going to go with capacity.

    e.g. I wonder if a 10 second shower - not too hot - with no other major influences in the day (I know - how easy is that to manufacture) would lead to a crash?
    If it did - interesting. What is going on there - is it less the physical exertion and more the environment of the shower?

    If a 10 second shower doesn't lead to PEM, what about a 20 second shower next?

    On a similar but different topic, I've had great success in building my memory/concentration capacity. I was put onto an app by a cognitive specialist; it is fun, and free, and is called Lumosity. Games take around 2 minutes each - 3 come for free each day - and you can do them each as many or as few times as you want.
    I needed to manage addiction to it - but once through that, have benefitted from it I think demonstrably.
    For those for whom cognitive overload can lead to PEM, it may be too much I suppose. Certainly in severe cases. But for mild situations, it could work. More difficult / taxing games can be avoided. Games can be done just for a few seconds and then stopped.

    OK, off to bed for me ...



  • I suppose this is what the whole of pacing is getting at - but I was a little turned off that field of discussion given the controversies of the British origin story of it.

    Are you referring to graded exercise therapy? This is not what most people mean by pacing, I think. Pacing is about reducing activity to a manageable level (which sometimes means very drastic activity reduction).

    For me PEM is pretty directly tied to my heart rate. Like most people with CFS I have both an elevated resting heart rate (more so when in PEM) and abnormally high heart rate in response to mild exertion. This means I go over my "limits" very easily. My heart rate at maximal exertion is also quite a bit lower than the predicted max heart rate for someone my age. It plateaus at 150-160, but my predicted max is 196bpm! These abnormalities are consistent with the existing research into cardiovascular performance in CFS.

    I was on a drug to lower my heart rate for about 4 months and it made a huuuge difference to my exertion tolerance. I still got PEM occasionally but it was much less frequent because fewer activities took me over my limit. However it also made me really sick in a different way, and from this I've drawn the conclusion that my elevated heart rate is a compensatory mechanism for some kind of deficit (perhaps reduced cerebral blood flow - which has also been a common finding in CFS research, incidentally!) and just happens to cause severe fatigue as a side effect. I read that the heart uses the most energy of any organ in the body, besides the brain. So it's not surprising that a compensatory mechanism involving an abnormally high heart rate would also cause fatigue.

    [edited to remove personally identifiable specifics about heart rate, but @PaulB if you would like to know those feel free to send me a private message]



  • @river said in PEM recovery tips:

    I was on a drug to lower my heart rate for about 4 months and it made a huuuge difference to my exertion tolerance. I still got PEM occasionally but it was much less frequent because fewer activities took me over my limit. However it also made me really sick in a different way, and from this I've drawn the conclusion that my elevated heart rate is a compensatory mechanism for some kind of deficit (perhaps reduced cerebral blood flow - which has also been a common finding in CFS research, incidentally!) and just happens to cause severe fatigue as a side effect. I read that the heart uses the most energy of any organ in the body, besides the brain. So it's not surprising that a compensatory mechanism involving an abnormally high heart rate would also cause fatigue.

    [edited to remove personally identifiable specifics about heart rate, but @PaulB if you would like to know those feel free to send me a private message]

    @river I've said it before, I'll say it again, I like the way you get about this stuff. Really pursuing what's going on.

    cheers,
    Paul.


  • Community Moderator

    A very interesting discussion over the nature of PEM and it's place in terms of ME/CFS arose in this thread, and while very interesting, threatened to take us away from the topic at hand. While this isn't always a bad thing, in this case the topic is one that is of great interest in and of its own, so really deserves its own thread - and I'm sure there are more PEM tips to come as well - so if you want to continue the discussion of PEM and where it fits with ME/CFS, please head over to:

    https://community.emerge.org.au/topic/165/pem-post-exertional-malaise-what-it-is-and-where-it-fits-with-me-cfs

    Back on topic, one PEM recovery tip I strongly recommend is not to get into complex discussions when going through PEM, and I'm rocking a little (just a little - but enough to mean I should behave myself) this evening 🙂



  • Hi River,

    Try blackmores vitamin B complex supplements & "melrose MCT oil (coconut oil liquid) with tea or coffee or cacao in the morning ("Go for longer" brand) Chemist warehouse. for a mental & physical enery boost.

    Regards

    Vinney



  • @PaulB

    Hi Paul,

    I found your finds interesting as I have a mitral valve prolapse (along with other medical conditions) which may partly explain my chronic fatigue.

    Regards

    Vinney



  • @SandyAtHome

    Hi Sandyathome,

    What I have found to lessen the duration of "a crash" I have intermitten rest periods through the day by meditation when I can.

    I try not to overuse the energy parcels we have for the day as we end up crashing for longer. I've learnt to really listen to my brain & body & give it a rest for half an hour when its needs it.

    You might try blackmores vitamin B complex supplements for a physical boost or a coffee or tea or cacoa with MCT melrose (liquid coconut oil) (morning only as caffeine effects sleep) from chemist warehouse for a mental boost.

    Regards

    Vinney



  • I use meditation



  • So this morning I have what could be described as PEM.
    I'll try and describe the feeling: bodily energy-missing fatigue, definitely in my legs - they feel really heavy, but also in my arms.

    I could talk about what has led up to here, but I'll leave that unless any of you ask about that.

    I will talk through my plan to recover, though, and maybe give updates on how that goes.
    I am NOT saying this is a universal management strategy. I am saying this is what I have developed over 25+ years, and what works for me

    One important part of "recovery" is for me to really control what I eat. Both in amounts and frequency, but especially what I would eat. I want to eat less often for the next hours - hopefully until I would "recover" in the short to medium term. And I want to eat less in terms of amount.
    I will "listen" to my body though. If I get a feeling such as hypoglycemia, I would eat.

    Another important part of "recovery" is for me to drink a bit more water. All the good stuff from that. I won't over do it though. Again, listen to my body.

    I will also try and avoid bad environments. Typing here at the computer, I notice that my touch reactivity to dust is elevated. Typing here is normally fine. But this is a hyper reactive time for me - so I will try and do these ordinarily ok things less.

    Finally, I wil try and avoid bad uses of muscles in the current circumstances. For example, I will try and avoid reaching, crouching, etc. I have problems with sciatic nerve, I believe. It also is exacerbated at the moment. Because I am tired though I have in the past short cut movements with reaching and crouching. I need to override base thinking with executive thinking here.

    Sorry if some of that doesn't make sense. Trying my best through currently mild brain fog.

    I will finish with what to some will be challenging, even controversial. Again, I am ONLY saying this is important for me, that it has worked for me in the past. Each individual needs to think themselves and talk to health care professionals etc.
    It is very important that I not have a day rest. No day sleep. Not even a day lie down. Sitting is ok. But need to mix in some low level movement / activity in there.

    I will try and do some "endorphin-lifters" of a low-exercise type. Listen to a podcast. Look outside at the puddles in the rain. Think of nice memories.

    OK - time for me to get off the keyboard. I will try and get back on in a few hours with an update.



  • 3 hours later, and "recovery" has gone well so far.

    An hour in and my "energy-missing" fatigue feeling was less acute and seemed to be bit by bit subsiding.
    I reckon all of the abstentions I was doing helped that - so not making things worse, and the drinking definitely felt like it helped. With the fluids (actually had a lactose-free milky roibbos tea also), the energy was being found gradually.

    I really enjoyed controlled, endorphin-lifting activity. For example, gently and progressively tidying the house felt good. Made sure I avoided problematic movements or dust-touch things.

    Just now, as I was feeling relatively decent, I had a look in the fridge for some food and picked something really controlled in its additives. I went with reheating some rice, and just adding butter and some salt. Not a big portion either. A medium one.
    Really enjoyed that.

    Now the go is to keep being good, as per previous message. I am alert that for maybe even up to a day from now I am susceptible to reverting, so being extra good is important.

    Unless I do revert, I will leave my "live-posting". (The dust from keyboard typing is still currently problematic)


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