My PEM has changed

[Andrew]

My PEM has changed. For example, I took a trip tot he doctor. When I got home I was a wreck. All I could do is lie in bed and wait to see what happened next. The next morning I had 90% recovered from the trip. I was almost back to my baseline level of feeling horribly ill.

I have been noticing this again and again. In the evening I can feel like I'm getting a sore throat, or about to enter some other sort health decline and the next morning that extra layer of awful is gone. I think Dr. Bell pointed this same thing out. That over the years his patients were better able to manage their PEM even though they were still ill.

This brings up an interesting point for me. The whole idea of defining the illness according to post exertion symptom exacerbation. If that were the case, I'd be kicked out of the ME/CFS category. And I don't think I should be. Not only because of me, but because from the beginning I've had many ME/CFS symptoms that did not fluctuate this way. Some of which are insomnia, light sensitivity, chemical sensitivity and one of my worst symptoms, which is orthostatic intolerance.

 

[Wolfcub]

@Andrew I feel, from my own experience, that there is a lot more to ME/CFS than how PEM behaves from one week/month to the next.
PEM can be a very strange animal. I used to have a 48 hour delay. Now I still sometimes do, but sometimes get ill the NEXT day after too much exertion.
Sometimes I expect to get it, yet sleep (even if I don't sleep really well!) and there's no sign of it the next day.

In my own case, this can sometimes depend if I'm going through a basic relapse or remission. If I'm going through a remission time, I can do all sorts of things and not even get PEM!

 

[*GG*]

People would be amazed at what I can do, ill 17 years now, and still working to regain my health!

GG

 

[Wishful]

If that were the case, I'd be kicked out of the ME/CFS category.

Me too, by some limited definitions. I've managed to cure my physically-induced PEM, but I still get cerebrally-induced PEM. I'm still brainfogged, and have a number of secondary symptoms and sensitivities that I still assume are ME-related, so I still class myself as having ME.

Your description of 'a trip to the doctor' matched my cerebrally-induced PEM. I'd feel lousy after talking to someone (plus the driving), but would recover the next day. Could your earlier PEM experiences have been cerebrally and physically induced, and that you're now not triggering on the physical exertion of the trips (with its own delay and duration of symptoms)?

 

[Wolfcub]

I know there have to be some guidelines to define ME/CFS, but many people react differently to different stresses...or sometimes not just to one stress, but maybe one on top of another one, for just a few moments too long....then they will get PEM.

At first it was hard for me to understand PEM, because I was active most days, as has been my usual habit for many many years. And as much as I could I kept up with my normal routines.
I just couldn't understand why I felt whatever-it-was (symptoms and exhaustion) "coming back " to overwhelm me on some days and not on others.

It took a lot of weeding out that....yes....I had that unexpected long phone call on "x" evening as WELL as having to work on prepping firewood ....as WELL as having to walk 6 miles. (a horrible combination so I discovered. Mental plus physical demands.)

I figured out that just ONE of those things I could often get away with, but certainly not all three on the same day. Something completely tipped the balance of energy.

Now for some people that would be different; maybe for the more severe that would mean hearing noise from outside, plus getting 2 hours less sleep, plus having to cook their own dinner one evening. It's all relative to our individual situation.

But there are many things that go to make up ME/CFS and many variations of stress, or those "last straw" stresses that break the camel's back and cause PEM, and yes, it's possible that those thresholds alter either negatively or positively as time goes by. And sometimes with no obvious logical cause that can be traced. And yes....they can come back, then go away again, then come back. Mine do.

So don't worry too much about the ME/CFS diagnostic criteria pigeon-holes.

Of course, it would be wonderful if you were to make a marked change and improvement, and it lasted! I truly hope you do!

 

[Andrew]

I posted too soon about my trip to the doctor. The visit was on Wednesday, yesterday was okay, and some time during today (Friday) I crashed.

 

[Wolfcub]

48 hour PEM is quite common @Andrew So sorry about your crash, and hope it lifts soon. They really are horrible I know

 

[Wishful]

I've recently gone for my first reasonably long (17 km) bike ride of the season, and been moving lots of wheelbarrows of soil. Both activities left me with very sore muscles (and saddle chafe!), but no PEM. My last drive into town, which had little physical exertion, and only minor social exchange (a few words with store staff), gave me fairly awful PEM even before I got home again, but I was feeling better again before bedtime.

This gave me a hypothesis about PEM. Physical exertion damages muscle cells, which results in an abrupt rise in IFN-g ~24 hrs later. This stimulates various immune system activity in the brain, resulting in PEM. Cerebral exertion might be triggering those same immune functions directly, and with much less delay, and probably clears out faster (not waiting for a drop in IFN-g in the whole body). This does fit my observations of my PEM. I haven't come up with a way to test this hypothesis yet.

 

[lizorton]

@Andrew I feel, from my own experience, that there is a lot more to ME/CFS than how PEM behaves from one week/month to the next.
PEM can be a very strange animal. I used to have a 48 hour delay. Now I still sometimes do, but sometimes get ill the NEXT day after too much exertion.
Sometimes I expect to get it, yet sleep (even if I don't sleep really well!) and there's no sign of it the next day.

In my own case, this can sometimes depend if I'm going through a basic relapse or remission. If I'm going through a remission time, I can do all sorts of things and not even get PEM!

I am new to this forum and have spent much of the past 48 hours catching up with so many fascinating threads. I have had CFS for 20 years but Ive been able to live with it and havent ever connected with anyone else with CFS. In the past two years my symptoms have got worse and more frequent and I am struggling more and more. I think its a stress response to stuff at work, personal problems (my daughter was diagnosed with anorexia last year) and perimeopause. Wolfcub I have seen a few of your posts on different threads and identify with so much of what you say. I find it hard to make connections between activity and PEM, I experience frequent and intense feeings of coming down with flu and fuzzy brain/fog.

Now i am in a cycle of being well for about 3-4 days and ill the following 2-3 days. Been like that since February. I cant identify what if anything is the trigger for PEM. It seems to come whatever i do. the flu-feeling comes back. does anyone else have that?

I havent done a proper experiment to see if i reduce my activity when i feel well whether i can stave off the inevitable ill. Thats what i now need to do but its difficult with three kids and a job and a partner who works 24/7!. I think as well i need to pay more attention to emotional and mental as well as physical exertion.

previously acupuncture had been very useful to me and echinachea he prescribed but recently that seems to have completely stopped helping.

 

[Wishful]

I cant identify what if anything is the trigger for PEM.

Some triggers can be surprising. It's not just physical activities, but cerebral ones too. Driving, socializing, composing messages here: these all trigger PEM for me and/or ruin my ability to sleep properly. I think some people here trigger on sensory stimuli, such as smells, noises or bright lights. I expect that some people might feel better if they turned down their monitor brightness and dimmed the room and turned their music volume down.

For physical triggers, it's not just the energy output, it can be which muscles are used in which way. Maybe you don't have a problem from some strenuous activities, but reaching for just one item from a high shelf might trigger PEM, and yes, it's hard to notice that correlation. If you feel worse one day, how are you supposed to figure out that it's from lifting the cast iron pan from its hook on the wall, or from twisting the lid off a jar? There are probably techniques for noticing such things, but I'm not sure what they are.