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Does PEM Severity Vary With Trigger Magnitude?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Wishful, Jun 15, 2018.

  1. Wishful

    Wishful Senior Member

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    In another thread I realized that I wasn't sure whether for most victims, PEM severity varied with with the trigger magnitude. I think mine is more or less the same whether I overdid physical exertion a little or a lot. Overdoing it by a lot might make the PEM take longer to fade, possibly because the triggering cytokines are produced for longer (the muscle damage takes longer for the immune system to clean up). I'm less sure of whether my mental-exertion triggered PEM (if it is actually PEM) varies with the trigger severity. Not enough data with varied levels of social activity, plus the difficulty of measuring PEM, especially when suffering from mental lethargy.

    So, what is the answer for the rest of you? Does it vary in severity, or duration, or symptom type (maybe strong triggers add headaches, or extreme flatulence or whatever) with the trigger magnitude? Feel free to include other interesting responses, such as varying with time of day, or phase of the moon, number of cell phone calls made, etc. Maybe something useful for researchers will turn up.
     
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  2. Runner5

    Runner5 Senior Member

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    PNW
    My son just graduated, had a birthday and a major college decision which went bust when I didn't have any money and his fin aid even with the scholarships wouldn't cover tuition. The resulting emotional stress since last Thursday was pretty hard on me.

    When I get under a lot of stress I don't sleep well, I eat at strange times and maybe not ideally. Instead of having time to make a salad, all the dishes are dirty so I eat toast or drink a Coke. When I'm stressed I am more likely to really crave chocolate - normally I would murder a pint of Haagan Daz ice cream to be honest, but I've held off on that self-destruction for now. So it throws off what good habits I've built up, the meditation, the yoga, the little works out and eating on the clock - that I've been valiantly protecting I guess. Because I'm so isolated it's hard to get the emotional support I need and also just friendly companionship. I live in a really remote area but have been thinking lately, a book club, a coffee shop meeting, a workout group -- you know anything to where I could be around other humans and just listen (don't really want to interact but would like to listen to their stories) I think that would do me good. I need an outlet besides watching YouTube videos, watching birds, and petting the cat.

    Prior to all the stress I had been handling cytokine issues by breaking up a workout during the day. I usually feel extra awful after I eat so I would go hop on my spin bike and put in about five minutes after I eat. It's a little like torture because you don't want to move, you really really don't want to spin bike -- that's the last thing on earth I want to attempt -- but do that 3 times per day and eat loads of fruit and veggies and I had a couple of good weeks and my ability to exercise and not crash. I was doing pretty well before the stress threw everything off, I guess because it takes so much concentration just to keep going and anything that throws it off and I'm back to square one - so I'm not really getting better with my CFS but sometimes achieved better days.

    In running there is a concept of a "recovery run" and "recovery work" where you exercise to release lactic acid build up from muscles and condition them a little bit but your are not taring down muscle or trying to build it, just get everything worked out so it can heal properly and respirate.

    You wouldn't go run 20 miles for instance and then sit on a couch for two days, I mean you could, but you're going to have wicked issues with your legs like that.

    So I figure with the cytokine thing, it's like my muscles have always gone for a long run, they're usually full of lactic acid, so I've been foam rolling, yoga, walks, the little workouts during the day and eating a good muscle recovery plan diet.

    Foam rolling in particular usually helps with pain.

    Working out I do have to have some sugar on hand, I usually put a teaspoon of coconut sugar in water while I "work out" (okay my workouts are really wimpy generally speaking) -- but if I don't I really will have terrible PEM and it's a day or two off if not more after that. I was using Vega and workout drinks but the coconut sugar is just dirt cheap and does the job without other additives.

    Haven't been sleeping lately, sorry if this is confusing and unhelpful reply ;-P
     
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  3. Stretched

    Stretched Senior Member

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    Good question. IMO, the PEM severity seems to correlate dierectly with the severity of the effort which causes it. However, that severity is hard to measure. For example, for me, 30 minutes of conversation is more severe than walking for half that time; or packing and moving boxes for 2 hours is less severe input than an hour of conversation.

    BTW. I’ve found that methylprednilonone completely eliminates PEM. It’s the same as Medrol (pack). Try it and test results; though this is not an endorsement due
    to the potential other side effects. It does work for me almost without reservation, to date.
     
    Last edited: Jun 15, 2018
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  4. Wolfcub

    Wolfcub Senior Member

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    I haven't pushed it hard enough in the last 12 weeks for a "severe trigger". But I can feel myself slipping down if I go over what I should do, and do a little extra. Like today I walked up the hill to collect some deadwood, and didn't feel bad for it, so silly me -went back for another one just because it looked like it might rain and I want to get dry firewood stashed.
    Then yes I got some PEM after that.
    Just a "down physically" sensation with some slight malaise, a trembly weakness deep inside my body and that sensation that nothing you do is going to make you feel better.
    It feels better after eating and resting for a few hours.
     
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  5. Mary

    Mary Moderator

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    @Wishful - my PEM definitely varies in severity and duration depending on how much I have overdone it. If I overdo it a lot, my crash will last 2 to 3 times longer, the aches and exhaustion that much worse.
     
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  6. hmnr asg

    hmnr asg Senior Member

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    My crash severity also depends on the magnitude of the trigger. However, what is an even bigger predictor of the severity of the crash is what i do after the crash. If I suspend all activity and rest until i am back to baseline, then it lasts much less. But if i even resume a tiny bit of activity the crash just gets prolonged.
    I am now in the middle of the worst crash of my life. In fact i think this is the crash that has made me go from a mild CFS case to a moderate CFS case. And this is all because i had been improving a lot and had committed myself to too many things. So when i started declining recently i knew i had to stop, but i thought: what the hek, i will just sleep it off on the weekend. But i didnt and kept going.
    Now i am so bad that im in the process of leaving my job. And just 4 months ago i was in japan for a month and traveling around and even doing some small hikes.
    If only i had listened to my body :(
     
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  7. Wishful

    Wishful Senior Member

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    @hmnr asg , the bit about post-crash activity is interesting. I hadn't even considered that. I haven't noticed any particular correlation myself, but I'm one of the subgroup with a 24-hr delay, which complicates things.
     
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  8. hmnr asg

    hmnr asg Senior Member

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    @Wishful So this delay, which can be very variable from person to person, can really confuse matters. Some people crash in 6 hours after a trigger and some might take a few days. This is why you need to write everything down and try to analyse the data.
    I am (or was) a computer scientist so i use these tools to find correlations that might otherwise be hard to just "sense" if you're relying solely on your own intuition and memory. The human mind is very ineffective in establishing causation between phenomenon if this time window is not sufficiently small.
    I use excel sheets (actually google forms) and everyday i record all types of data points: my energy level, activity levels etc. Another useful tool for this is to use a fitbit or another heart rate tracker and include this data as well.

    I think a lot of people miss this big piece of the puzzle because of the time delay.

    Here is a long story about how i missed PEM as a symptom: When my cfs started i was VERY active. After CFS i had a tiny window of energy but i refused to stop going to the gym. At this point i had no idea i had CFS and my doctor had simply told me that its all in my head, so i had no idea what is PEM. Anyways, i used the small energy budget i had to still go to the gym. I had no idea that "stopping" exercise might be helpful, because i never stopped going to the gym. There never seemed to be any correlation because i was in a constant crash state. Until one day when i broke my ankle while ice skating. I ended up being confined to my apartment in a big cast. After a few weeks i realized im a lot more clear headed! Then cause and effect was clear finally.
    My case is different from yours, yours is a case where cause and effect might be too far apart whereas in my case the "effect" part of the equation was ever present and overlapping so i never saw that immediate feedback.

    H
     
    Last edited: Jun 15, 2018
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  9. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    Definitely yes. But also duration of how long you hold over AT.
     
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  10. Wolfcub

    Wolfcub Senior Member

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    I'm sorry you fell down. It's a horrible live-and-learn process isn't it? And we are learning I suppose to listen to those bodies, not our desires and what's going on in the mind. But yes it's a drag sometimes.
    I do the same, I have to admit, but on a smaller scale. I can't manage to resist the will to go go go when I feel better :(

    I wish you the best and hope with another rest period you will regain some good ground.
     
  11. Mel9

    Mel9 Senior Member

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    This is true for me too
     
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  12. Mary

    Mary Moderator

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    I'm exactly the same way. I've learned the hard way that I have to do nothing until the crash is over; otherwise it's twice as bad.

    I hope with sufficient rest you'll be able to regain some of the ground you have lost. (Though I am so sick of resting, I know we all are! :aghhh:)
     
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  13. Mary

    Mary Moderator

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    I also have the 24-hour delay before the crash hits. I usually know when I've overdone it, and always hope I didn't (though part of me knows I did) but I have to wait until the next day to know for sure.
     
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  14. Mary

    Mary Moderator

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    @hmnr asg - have you seen this thread about PEM busters? It's definitely worth checking out. Since I've been taking branched chain amino acids for close to 3 years now (or 4? not sure) my crash recovery time has been cut in half. There are several other supplements which might help you too.
     
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  15. Shoshana

    Shoshana Northern USA

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    Interesting topic, @Wishful

    For myself, the severity does not vary AS much as the duration.
    A small trigger can bring on severe resulting symptoms.

    However, larger triggers, result in much lengthier PEM , symptoms, and difficulties, and even setbacks and relapses.
    I haven't yet, but I do look forward to reading the others' above replies in this thread!
     
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  16. hmnr asg

    hmnr asg Senior Member

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    Just went to whole foods and bought the jarrow formula BCAA . Going to start taking it regularly . I would give anything to undo this latest crash :s
    Thank you for the recommendation!
     
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  17. Wishful

    Wishful Senior Member

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    @hmnr asg , I too wanted to do computer correlation analysis on my data, but I've never come up with a way to put a consistent rating for my symptoms. Also, it seemed like a lot of work to maybe find a correlation. Maybe if I wasn't suffering from mental lethargy... :ill:

    I also suffered from PEM long before I knew what ME/CFS was. I just noticed that sometimes I'd feel a bit better, go for a long bike ride, and consistently would feel much worse later the next day (hey, it starts consistently 24 hrs after I started my ride!) I sometimes wonder if a computer analysis would reveal something I've missed. The written records are absolutely necessary, because I know that I misremember without them. With them, I could go back several months and verify that yes, whenever I wrote down that I felt suicidal, the day before I had a niacin tablet or food rich in niacin.

    It was pure luck to catch my type IV delayed food sensitivity. I wondered if I'd developed an allergy to orange juice, so I drank some, and felt fine the next day, so 'no allergy'. The next day, I felt flu-like symptoms suddenly surge up, and just happened to look at the clock, and remembered that was the same time I drank the OJ two mornings previous. It proved to be a precise and consistent 48-hr delay (typically +/- just a few minutes). I'm not sure how long it would have taken me to recognize a delayed reaction if it was 39 hrs, 13 minutes, or a variable delay.

    I strongly recommend ME/CFS victims keep accurate and detailed (as much has you have energy for) records of food, activities, and symptoms. I just kept paper records, but entering them on a computer in a format that allows easy analysis would be better.
     
  18. Wishful

    Wishful Senior Member

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    There was something else I meant to add to my previous post. hmnr's example of not noticing PEM because he kept exercising is a good example of why we should change our practices once in a while to test whether things are still working. ME/CFS is notorious for treatments that work well briefly, and then stop working ever after. When I see people post that they take a lot of supplements and drugs 'that work for them', I wonder whether they've tested recently to see if they still are actually having an effect. If you've taken supplement x every day for the last three years, how do you know it's still working? Try skipping it for a few days to see if you feel worse, and then better again if you take it again.

    I've encountered several treatments that simply stopped working over time, usually a gradual loss of effect, so it took a while to realize that it wasn't working any more.
     
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  19. hmnr asg

    hmnr asg Senior Member

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    @Wishful
    I wish i had some energy to build something to do this for people , like an app or a website. I explored a lot of solutions for this including every app in the app store and didnt find anything that I really felt was suitable for this.There are many apps in fact but none of them do quite what we need for CFS. Two of them are : Cara and mySymptoms. In the end my solution is google docs.

    Very well said and the quotations are very appropriate around "work for them".
    Every time i see a thread title that says "i cured myself with..." I click hoping to get the magic bullet only to be faced with the list of around 30 supplements.

    The problem with an illness that has no cure and waxes and wanes is that it starts to play tricks with your mind in terms of understanding what is working and what is not. You might think: "did I get better this month because I took CoQ10?" or "yesterday i talked to my sister and now i feel worse, maybe my sister caused my CFS " etc. I honestly feel that most of the people who got better end up attributing their improvement to whatever supplement they were taking. But they might have gotten better without said supplements (but unfortunately there is no way to repeat such an experiment). I think the only established variable that helps CFS is rest and inactivity.

    Its easy to see correlation and confuse it with causation. I honestly think 90% of all the supplements we take are not doing a thing, and the other 10% may do at some point and then stop working as you say. If we had saved our money and donated it to some CFS lab maybe there would be a cure now :S
    But i think it gives people a sense of control over an otherwise helpless situation, and that is helpful in itself.
     
    Last edited: Jun 16, 2018
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  20. Wishful

    Wishful Senior Member

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    The lack of a way to identify which factor altered symptoms on a given day is definitely an annoying problem. If I feel better today, is it because of something I ate, or something I did, or just a random fluctuation? My solution is repetition: if I suspect something works, I try it again, then wait a suitable period, and try it again, and repeat as many times as necessary to convince myself that it is a real effect. Then if I take it continually, I try skipping it occasionally to see if it's still working. Varying the dose occasionally is useful too, to make sure the optimum point hasn't changed.
     
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