PEM discussion thread

posted this in the wrong thread:
I 'discovered' (took many years of trial and error) that for me the best way is 'following' what I since found out is called the 'energy envelope theory'.
"
The key is to avoid overexpending energy supplies
or consistently going outside the “envelope” of available
energy."

http://emerge.org.au/wp-content/upl...alomyelitis-Chronic-Fatigue-Syndrome-2008.pdf

I would like to see this research done again but this time with objective and possibly biomedical outcomes.

 

Does anyone who gets brainfog experience it as a delayed exacerbation with PEM?

With me it worsens more immediately, just wondered if that's always the case.

 

I've found that there are two supplements that help when I've overdone it: add more CoQ10 and use pH basic to combat lactic acid buildup. It seems to make me feel better.

What I probably should try is just pushing both of those for the next few days after overactivity, where I've gone over out of necessity or by accident. Usually I've been doing it the day after, and it just seems to prolong the period to crash.

 

1) I get 'warning' neurocog symptoms first -- telling me to lie down and do nothing. I used to 'read' this as procrastination and it drove me nuts.
2) Then the rest of the crash symptoms set in -- achiness, pain, that dragging-down feeling, and the autonomic stuff: dizziness, weakness, OI.
3) Brain fog seems to come on its heels, while the more overt symptoms are still present. It may, in fact, be a downstream consequence of worsened autonomic function.

I wonder if anyone else is aware of a distinct progression like this?

(I'm finding everyone's input really fascinating in this thread!)

 

i don't refer to it as brain fog but the cognitive impairment is more immediate and I can recover from it quickly if I lie down with ear plugs and eye mask, unlike physical PEM which is delayed and takes 2 days to recover..

 

In the earlier days of my illness, I followed the energy envelope theory with some success. I even went to the gym and, if I had enough energy, would do a very little exercise. If not, I had coffee and went home. I never pushed myself to do any gym work. After a while I even improved. Don't tell the BPSers. Importantly I followed no schedule and did what my body felt comfortable with. Some weeks I did nothing.
I now do not know the constraints of my envelope. I wonder if everyday life is harder to assess than the gym because it's so variable, or out of order experiences are harder to assess than what we do every day.
I have been flattened by my last few days, despite following every boundary I knew. Am just about to take extra ubiquinol @JaimeS

 

Good point; cognitive stuff seems easier to resolve, whereas the physical function takes days or weeks.

 

I get it immediately too. In my severe years I got a headache immediately along with the difficulty to think. Couldn't bear anyone to talk to me, not able to answer questions in any detail except for yes, no.

I would also get the delayed PEM after this.

 

I find that helps usually too.

I use the terms cognitive dysfunction/impairment or brain fog depending on the situation. Brain fog is easy to type, but doesn't fully describe imo.

My progression is a little different, but yes I have one. It didn't seem to fit Leonard Jason's PEM questionnaire in a straightforward way. Interesting.

 

I feel I have two (or three) different things.

First it's a reaction after one activity that was really too much. A few hours after I get some sort of "fever" reaction, where I get extremely cold with burning pain in muscles, I can only lie down under three blankets and wait it out. That takes 2-3 hours and it's pretty exact after 4-5 hours after stopping the activity. With the medication I have now (scIg), this reaction is almost gone

Then there is the reaction 24-48 hours later, where I'm just very hang over and sore and don't have any energy to do anything or think. This reaction is less clear in time and it's more cumulative, so if I make myself do something anyway on the day after (which is possible, because the biggest effect doesn't set in until after 48 hours), I can postpone this reaction for a few days, until it hits me and I really can't go on anymore.

When it hits me after a few days accumulating activities, it's usually during some activity and then I have the sudden "can't walk the stairs, lift an arm and/or feel extremely ill" days.

I do one activity a day and rest the day after, even though I feel sort of "ok" the day after, just to feel if I have a reaction. I try to avoid the third reaction and the accumulation, because that makes it worse in the long term.

I have the feeling it takes longer to get a reaction now (48h), when I compare it with a few years ago. On the other hand I pace very well now, so I don't accumulate activities and totally "crash" anymore. I think in the beginning (when I was mild) I was constantly in PEM, but I just didn't know that it was a reaction on activity. So I would just go on and be "ill" very often.

 

It's interesting you and others find cognitive symptoms resolve easier/quicker.
That is definitely NOT the case in our household where it can take as long or longer to return to cognitive baseline than a return to physical baseline.

 

Without external reference points, i.e. people, non normal tasks/problems, how would i tell how long it takes to get back to baseline?

 

When I first developed ME (and had no idea what the problem was), I would get almost immediate PEM. I would get back from doing something that had made me much more tired than it should have and flop down on the sofa. As I laid there I could feel the energy continue to drain from my body. I took me 2 nights sleep to feel better.

I now have more typical PEM. It took me a while to catch on that what I was doing was making me feel worse when the reaction was more delayed. I still often know by the end of the day if I have overdone and am in for a bad day the next day. The worst of it just comes later.

 

In ME, it was always known that it was exertion and fatigability that were the cardinal symptoms. When the CDC went to Incline Village to investigate the epidemic there, they somehow manage to describe the illness as fatigue lasting 6 months which is a very strange way to describe an outbreak of cases which came on suddenly.

Overnight, ME became CFS and the main symptom became fatigue which was not universal in ME. The US doctors forgot about PEM.

I had never mentioned fatigue but I can see how I might have thought my symptoms were fatigue if I had been told I had Chronic Fatigue Syndrome.

Recent research showing that we have a broken aerobic respiration system has given us a scientific way to look at PEM and crashes. If we stay within our energy envelope, within our available ATP we will feel fine, as we go over it and start running on anaerobic energy production we will feel bad.

The thing about the anaerobic system is that it is for emergencies, a "dirty" system if you like. It takes ATP to clean up the mess it leaves. Healthy people can easily use their aerobic system to clean up, but ours is broken! means that we not only have to try to get on with life but we are mopping up as well all on a broken system so ATP is used for that and we have less for everything else.

It is no wonder we crash. So I think it is all biochemical balance of what we do, what energy we can produce and what else is going on in our bodies at any given time such as fighting off bugs and environmental insults.

That is why pacing only works up to a point. Our energy needs are not just what we do but what our bodies have to cope with so a cold day uses energy to keep warm, or we have to digest something heavy.

I really hope it all gets work out soon and we will have a proper language to describe what is going on.

 

I used to be delayed a few days, once i made it a whole week. These days its same day or next day, sometimes two days but very rarely.

 

From observing my wife, it is not that you wouldn't feel fatigued/tired, but that you would feel as least fatigued/tired as you are likely to be able to. But it's still not good at best.

 

Posts moved from the WHO news thread

"If you don’t experience PEM, you can gradually increase your level of activity or exercise to improve your fitness levels"

Well, I didn't experience PEM for 10 years until I started exercising . . . so wrong again.

 

How are they "wrong again". If someone was to follow the advice given here, upon experiencing PEM they would reduce their activity levels to a point where they no longer experience it. How is that any different to the sort of advice that most, if not all, forum members would give?

 

@Andy

"If you don’t experience PEM, you can gradually increase your level of activity or exercise to improve your fitness levels"

We don't understand the pathophysiological of PEM, and yet they're using it as a general 'scientific term' to advise patients on exercise.

If a patient is in the early stages of developing ME, wouldn't you agree that it would be in their best interest not to exercise to 'improve fitness levels' with or without PEM? It can takes years to develop worsening and deeper levels of disability that affect other systems without even realizing until it's too late.