PEM, timing, symptoms and levels of disability

Posts on PEM moved from this thread as they had gone off topic.

 

@JaimeS , re: PEM-delay. Does the PEM-delay correlate inversely to how often you suffer it now? As part of pondering why the less educated opinion of ME is that it's all about fatigue, not PEM, I've begun speculating that the typical patient a GP sees is, in the grand ME scheme, actually only mildly affected/higher functioning. However, they are constantly going over their exertion limit, and they describe this as being constantly fatigued, not realising that they are actually in a rolling PEM state. So as people start to give up the effort to function at a normal healthy level and start to pace themselves, the number of times that they over-exert reduces and then the occurrences of PEM start to be broken up and gaps become noticeable. Does that makes sense? And does your PEM delay correlate to your growing efforts to pace yourself?

 

This is a valid hypothesis; I was definitely in 'rolling PEM' before I understood my disease.

I generally don't crash, now; but when I do, there seems to be a delay. I wonder if swifter PEM requires a secondary exacerbation?

Perhaps this thread should be split, though, as this isn't really about the ICC.

 

May I ask, since I already read this in another thread, is it really like that, that if you paced correctly you wouldn't feel fatigued/tired?

 

(Edited to be clearer -was trying to write as little as possible)
@Inara - I've achieved that at times (or it just happens). I can occasionally have brief spells on waking where I feel almost well. This might be anything from a few minutes to an hour or so. Then talking or getting up brings on brain fog, the first thing to come back. I start to notice fatigue/energy disappearing, other symptoms too. It goes. This sometimes happens after lots of bed rest.

This might make a good poll and discussion if you (or someone else) want to set one up.

 

No, I wouldn't personally describe it like that. To try to explain it, if I pace correctly, do I feel well? No, definitely not. But if I pace correctly then I feel dramatically better than if I'm in a PEM state caused by over-exertion - one of my personal indicators that I'm pacing well is if I feel that I have the potential energy to do more but bitter experience tells me to hold back.

But, in addition to what you describe, would you say that you can overexert and suffer PEM, where all of that is exacerbated? If yes, then you are pacing, but, as we know, pacing isn't a cure, just a way to try to avoid the worst of this illness.

 

Hmm - should have taken more care in what I wrote. Have edited.

 

I've been looking at all the various disability scales for ME/CFS and I don't think any of them are particularly satisfactory, need 'tweaking' to find a fit, and seem largely to concentrate on ability to work.
They all vary, and like the Chalder fatigue scale, do not seem to allow for fluctuation and lack a baseline.
As per my question on the poll thread; define 'usual'.

I think we need a new thread to try and thrash out the different ME scales that split people into mild, moderate and severe and maybe come up with something that works better.
(The NICE guidelines version will presumably be up for discussion(?)) I haven't noticed it being addressed in any of the Scope responses (nb I haven't read the final version of S4MEs yet).

The UK ICD codes for ME are split into these three categories and whatever treatment is ultimately deemed OK to include in the NICE guidelines will presumably (as now) use mild, moderate and severe diagnoses to decide what is appropriate. So IMO it is important to get this right.

 

I was just thinking about this a couple of days ago, wondering if PEM delay might be linked to the severity of other symptoms - like... is PEM delay shorter when symptoms are severe? The idea that repeatedly re-triggered PEM from constant exertion attempts could actually be a factor in the early severity of the disease is a very interesting idea.

I've said in the past that I didn't notice PEM until a couple of years into ME because the early severity of my other symptoms was probably making delayed PEM hard to recognize, but, as you suggest, constantly re-triggered, delayed PEM - coming at me in a sort of time-delayed conga line - could have been contributing to that severity.

I know that in the first few months of the disease, I was instructed to exercise my way out of my presumed "deconditioning," as if I'd managed to become terribly deconditioned in a just couple of weeks following the flu. If anything, I'd returned to normal activity too quickly following that "flu," and it was then that ME struck.

 

I think I'm about 50% disabled at present by the ME disability scale: http://www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/.

 

Does anybody know here "high phases" after having done too much (i.e. normally you crash but you don't, instead you feel over-active, "high"...this for several days until a crash follows)? What's this?

 

Yes i've experienced them. They are rare but do happen, the most noticeable one was when I moved in here, a little over 15 years ago, 2nd/3rd floor flat (depending on how you count 'em), no lift. I had a fair amount of help but I was still on the go, physical for several hours. I was expecting major payback but next day, nothing, I actually felt better than normal, next day similar, payback started the day after but was nowhere near as bad as expected, although it did drag on a bit.

At that time it was typical for there to be a 36 hour ish delay before PEM, but normally I got a fairly immediate response if I over did it by that much, just to keep me occupied until PEM arrived.

I have no idea what, if anything, this is called - I have always assumed it was a protective effect of adrenaline in certain situations.

 

Yes, I have them too. The HFME call them "adrenaline surges", and their description fits really well with my experience:
http://www.hfme.org/adrenalinesurgetips.htm

From a scientific perspective we don't know if it's actually adrenaline or something else, but I still find HFME's article very helpful.

A friend of mine asked prof Anthony Komaroff about adrenaline surges a while ago, and he replied:
"The question you ask has never been studied, to my knowledge. I think that surges of both adrenaline and cortisol are plausible.

 

For me, same day "PEM" starts when I have an immune activation of some kind (mostly viral), delayed PEM always begins when I've gone over my energy boundary.

 

There is so much good here that I feel like I'm going to have to break this up into a few replies! <3

Nah. Twice I've been asked recently 'how often' I have symptoms. The answer is 'always', though occasionally in blessed moments (that are mostly carb-free) the pain at the back of my neck disappears until I eat something again. Other symptoms are there, but still. Lovely.

I came to a really funny conclusion the other day, which is that I've been sick a lot longer than I thought. This comes from looking at my 2011 bloodwork with a more knowledgeable eye than previous, and beginning to think more clearly about that time. We all know how funny our time-sense can become when we have ME. But what I remember is another one of my first GP's hilariously awful lines. (He had a few doozies.)

I was tired all the time and beginning to have cognitive issues. I brought this up in the doctor's office and I think I described the fatigue as 'crushing'.

"Well," he said. "You know... as we age..."

I was 29.

The joke I made when I got home was that I knew things slowed down when you hit 30, but that I didn't know it was instantaneous, ha ha ha.

But when I was "turning 30"? That was 2011, not 2014, which I had -- up to now -- considered 'onset'.

Somehow I worked for three more years.

2014 was probably more accurately described as when I hit perpetual PEM.

 

I'm going to go for adrenaline -- or else some neurotransmitter surge. The reason I am is that I react to a surge of cortisol -- even my own -- with instant crashitude of the orthostatic type. The room spins, cognition falls into a hole. I would not feel bright and energized by that, and I do experience a sensation similar to what's described above.

I love that article you linked. The idea of 'pushing back a crash' by continuing to do small amounts of activity... absolutely, YES. This disease is so strange that I'm super-pleased when I see it described qualitatively in a way that makes sense, especially when it's not something I've seen put into words before.

BTW, I've found that if I've overdone it, it's better to scale back activity slowly into rest rather than to be running about one moment and flat on my back the next. It seems to both delay the crash and make it less severe. This is all VERY subjective so I'm wondering if anyone else has noticed this.

 

The more I delay it, the worse it gets and the longer it lasts. As much complete rest as soon as possible is what works best for me. But I really do have to force myself to rest, the "momentum" of the adrenaline surge is very difficult to break and it's super tempting to just keep going.

 

I have some data from my Fitbit hrm which describes my last week of trying to avoid pem as much as possible.

It's not been a usual week because I've come away on holiday. We arrived on Fri afternoon and I have just dressed for the first time ( Mon pm) which was not advisable since it's crashed me but wworkmen due to make repairs.

We travelled to Cornwall from London ( me as passenger) using my best crash avoidance techniques. I rested in bed on Mon, Tues, Wed and Thurs morning prior to leaving, got dressed and into the car at 1.15. We arrived at our stopping point halfway at 4.15 and it was bed immediately, food ordered in. So I was sitting upright for 3 hours that day. The next day we left before breakfast so as not to waste upright time eating, and drove stopping to pick up food which we quickly ate en route. Arrived at town closest to destination in 3 hours and spent half an hour being pushed in wheelchair to pick up odds and ends. Then stopped 20 minutes later for coffee and something to eat before straight to bed at our flat. Time upright almost all seated was 7 hours. I had done no packing, meal prep etc. so that energy could go into journey.
Utter total exhaustion on our arrival. Decision made not to do this again. It's been our holiday destination for ever. Our adult kids and grandkids are coming down at the end of week.

During this time hr lowered from 68 rhr on the Sunday before we travelled to its lowest point 63 resting heart rate on Thursday and Friday, the 2 days we travelled. On the following day Sat it was 68 and on Sun it was 71. Today after 3 days in bed, it has lowered to 68.( all resting hr) During the day today, my in the moment hr has often been about 59, a sign of a severe crash.

This seems to me that there was a 2 day delay in pem fully kicking in after an immediate severe fatigue, and longer than that in recovery, not yet achieved although starting to improve.

Have done this journey regularly for decades and never had this response. Can usually go straight to pub for a meal, say hi to a few people before starting to unpack etc. This time I could do nothing apart from own personal care, adapted for low functionality e.g. Toothcleaning in bed. Currently at 80-90% disabled.

Unsure if we can return here. Very sad.

ETA: if anyone has any suggestions on how to improve my crash avoidance technique, pleeese add.