My perception of PEM - is this unusual?

[HipsHops]

My CFS started at age 30 with acute mononucleosis (showed up in bloodwork). I have a CFS diagnosis from several hospitals, according to the Canadian criteria, and some of the “typical” lab abnormalities (e.g. very low NK-cell number & function, low IgG subclasses,..). However, I’ve always been wondering whether my PEM is somewhat untypical for CFS, or whether I just find a different way to describe it.

Sometimes, when I read stories from other patients, I am under the impression that they (at least those who are moderately affected like me) can actually (in theory) do sports, but will crash the next day and lie in bed for the next month or so.

My perception of PEM is so different… Once my hr goes beyond a certain threshold (around my AT I suppose) for more than a couple of minutes, I feel horrible. No delayed response, the symptoms usually come within MINUTES (I envy those who can at least enjoy their activities although they have to pay later..). Horribly exhaustion - and apart from that, the term “flu-like symptoms” sums it up pretty well. Usually my lymph nodes get tender, but the worst thing is that I feel like a have a huge fever.

When I stop and allow my hr to go down, it takes everything between minutes and weeks to recover. If I’m lucky, I will sit down for the next three hours and still prepare dinner afterwards. Normally, I’d just lie on the couch the rest of the day, and feel pretty much “recovered” (at my “normal” symptom level) the next day, being able to repeat the whole story. Sometimes, and this happens with both physical and emotional exhaustion (e.g. a huge fight), it will take weeks though until I get back to where I was before the activity. Lately, I tried some winter sports (what was I thinking..?), crashed the same day (with the symptoms kicking in after a couple of minutes, as usual), and was able to do a lot less for the next 14 days, with higher temperature than usual (sub-febrile), more flu-like-symptoms (sore throat, feeling feverish, swollen lymph nodes etc.) more pain, and substantially more fatigue.

Is my PEM weird? Or pretty normal? Am I the only one who can link symptom increase to heart rate in such a direct way? Am I the only one who doesn't have a delayed response to activity?

"Exercise intolerance" is my biggest problem tbh, both because it restricts me in everything (can't work but a tiny little bit from home), and because of the emotional aspect.

 

[JaimeS]

Normal. Some of us have the delayed-type, some of us crash straightaway.

I'm like you. About fifteen minutes of sustained push, and that's that. I don't get 'flu' symptoms -- mine is more like going into shock. But the rest sounds about right.

-J

 

[*GG*]

My CFS started at age 30 with acute mononucleosis (showed up in bloodwork). I have a CFS diagnosis from several hospitals, according to the Canadian criteria, and some of the “typical” lab abnormalities (e.g. very low NK-cell number & function, low IgG subclasses,..). However, I’ve always been wondering whether my PEM is somewhat untypical for CFS, or whether I just find a different way to describe it.

Is my PEM weird? Or pretty normal? Am I the only one who can link symptom increase to heart rate in such a direct way? Am I the only one who doesn't have a delayed response to activity?

"Exercise intolerance" is my biggest problem tbh, both because it restricts me in everything (can't work but a tiny little bit from home), and because of the emotional aspect.

Your history is very much like mine, caught Mono at 33. My PEM i guess is more traditional, although I have pretty much always exercised. I don't "crash" right away, but I do not feel well. I used to get a runner's high from biking, but not anymore!

I had a major crash in 2009, and stopped exercising for about a year then, to help my body bounce back. I worked ill for 10 years. I've been ill for 13 years. FYI

Hang in there bud and take it as easy as you can! Do you have night sweats? I guess that goes away after about 7 years. That happened for me, actually maybe 6 years

GG

PS Are you familiiar with the 2 day in row exercise test? I had that done in 2009, and function at about 60% according to that test.

 

[Billt]

My son is very much the same. Has to really pace himself. 5-10 minutes of doing anything even walking and that's it. Has to rest up for the next one, This also causes more brain fog in his case as well ..
Weird stuff !!!

 

[Skippa]

I get both types.

If I'm already in a crash, or on my way there, then it's as you describe. But I still get a delayed magnification over a couple of days.

Otherwise, if I've managed to look after myself for a few days, then it's delayed.

I think of it as being in "acute phase" or "chronic phase".

 

[ScottTriGuy]

Once my hr goes beyond a certain threshold (around my AT I suppose) for more than a couple of minutes, I feel horrible. No delayed response,

What I call 'present exertional malaise'.

The sicker I got, the more constant the malaise became. Evidently living / breathing was too much exertion during that time.

 

[TiredSam]

Normal, which is why I have a list of activities and time limits next to them, which is the point where I start feeling crap immediately. Kitchen / housework, 20 minutes etc. Also get delayed PEM if I've just been generally overdoing it.

 

[PennyIA]

My perception of PEM is so different… Once my hr goes beyond a certain threshold (around my AT I suppose) for more than a couple of minutes, I feel horrible. No delayed response, the symptoms usually come within MINUTES (I envy those who can at least enjoy their activities although they have to pay later..). Horribly exhaustion - and apart from that, the term “flu-like symptoms” sums it up pretty well. Usually my lymph nodes get tender, but the worst thing is that I feel like a have a huge fever.

That matches my experience as well. I really REALLY have to moderate my activity. Sports is out of the question. Fast walking tends to be out of the question. Strenuous housework is out of the question.

I do get the delayed crash if I keep my HR down, but am still active for too long - so, a slow leisurely walk for 20 minutes is ok... but for an hour? that will trigger delayed PEM.

 

[CantThink]

I feel as if I get both types. I see the immediate type as more dysautonomic/POTS related, and the more delayed type as more traditional PEM.

For example, Wednesday afternoon I left the house, for first time in a while, to go to hospital for an appointment. Today I wake up and I'm bed bound. I feel so ill in a 'crashed' kind of way. This will likely continue now for a while without respite.

Yet day to day when I do essential activities like preparing food or taking my dog to the toilet or feeding my birds, I 'pay for it' and I worsen the longer I'm performing the activity or the more activities I do, and that's pretty immediate with functioning decreasing the more I'm doing... so basically as the day progresses, until I have to lie down.

This seems worse if I stand still or there is a lot of movement/exertion required - washing dishes, chopping veg etc. It usually eases up a bit each 24 hour cycle so after I sleep at night (if I can), then the next morning I usually have reached my baseline of functioning again. Thus the cycle continues and is only plunged into chaos if I (accidentally) induce the traditional delayed onset PEM.

 

[rosie26]

I have always experienced the immediate and the delayed PEM. The immediate was naturally at it's worst in my early severe years. I always felt it first in the head (could feel the headache coming on or if I already had one it would get worse) also brain refuses to think and express clearly and then the breathing along with heaviness in walking kicks in.

I would then develop nausea and weakness same day and an inner tremor and then I would get the further deterioration with the delay over the next few days which would be a profound weakness. There are more symptoms but I can't remember them all right now.

Over my moderate years I found that I could sometimes lessen a bad delay by resting up extremely. But in my severe years no amount of rest would help really. There's a lot of intense suffering in those years. I can do more these days before feeling the effects of the immediate PEM. But it's still there and lets me know when I have done too much.

 

[Forbin]

When I first became ill, all I noticed was an immediate reaction to exertion that made me feel "worse" over and above a general, constant, background sensation of the flu.

I felt that everyday, so there was no way to connect it to exertion on the previous day - which was an improbable connection to make anyway. Who would expect to feel amplified immune sensations 24 hours after some kind of exertion?

It was only after I had been ill for a few years, and perhaps I was either somewhat better or the daily feeling of ill health had become the "new normal," that I began to notice that 24 hours after some kind of exertion I had that weird "coming down with something" sensation which makes you feel "wiped out."

So, I guess I'm saying that it may be that when your "background level" of "malaise" is already high, it may be more difficult to detect the delayed sort of PEM ~ or maybe delayed PEM doesn't manifest right away for some people.

 

[rosie26]

Yes, I had the flu sensation ever present in the background too @Forbin the PEM's came on top of it and I couldn't distinguish the two different types of PEM in my severe years. It's only in later years that I recognize the two types.

Edit: I think there is a third type of PEM as well. I only noticed it in my moderate year 4 years ago and that is months and months on end of accumulation in overdoing which leads to a very serious relapse - I lost years of ground with that one and I still haven't made it up yet.

 

[TiredSam]

I think there is a third type of PEM as well. I only noticed it in my moderate year 4 years ago and that is months and months on end of accumulation in overdoing which leads to a very serious relapse - I lost years of ground with that one and I still haven't made it up yet.

I'm going to print that out and put it somewhere prominent.

 

[CantThink]

Edit: I think there is a third type of PEM as well. I only noticed it in my moderate year 4 years ago and that is months and months on end of accumulation in overdoing which leads to a very serious relapse - I lost years of ground with that one and I still haven't made it up yet.

Good point @rosie26. I have experienced that too, most recently being after surgery. Laid me extremely low for about 10 months. Used LDN to get me out of it back to my usual normal baseline. It's really tough keeping up with all these different issues!

 

[panckage]

@HipHops we have similiar experiences of PEM. From what I have read in this forum these experiences seem pretty common for those of us with mild cfs. Unfortunately there doesn't seem to that many threads relating our sub-group's experiences. I will link a thread I believe had a lot of experiences I could relate to even though working full time is probably impossible for me haha: http://forums.phoenixrising.me/inde...-or-close-to-what-is-life-like-for-you.37546/

 

[HipsHops]

Thanks so much for all your answers!

I guess you're right and there's (at least) two types of PEM, the immediate one ("malaise", haha) and the one that can last for days or weeks (and for some poor guys for months or years) and that can be delayed - or start within minutes? I've never really seen it like that. Does it make sense if I say that I always trigger type 1 PEM as soon as my hr goes up, and rarely trigger type 2 PEM? Maybe my threshold for type 2 PEM is quite high? I remember I crossed it twice last year, and it took me 8 weeks resp. 2 weeks to recover. This time it has been two weeks - so far.

PS Are you familiiar with the 2 day in row exercise test? I had that done in 2009, and function at about 60% according to that test.

I'm familiar with the test. I had the test done half a year before I got sick (coincidentally) and had a VO2 max of around 44. Five years later, with CFS, I had around 28. I don't know how I'd do the second day compared to the first day though. My best guess is that I'd do equally well, because the test wouldn't last long enough to trigger long-term ("type 2") PEM, and that really puzzles me. Isn't that weird? If they make that test a diagnostic test for CFS, would I get a CFS diagnosis at all? Btw I also know that my intracellular ATP is really, really low... :-(

That matches my experience as well. I really REALLY have to moderate my activity. Sports is out of the question. Fast walking tends to be out of the question. Strenuous housework is out of the question.

I do get the delayed crash if I keep my HR down, but am still active for too long - so, a slow leisurely walk for 20 minutes is ok... but for an hour? that will trigger delayed PEM.

Sport is out of question for me as well,... that's at least what my head says. I'm afraid I'm not always that sensible, and those few times a year that I try, I feel awful.

Yet day to day when I do essential activities like preparing food or taking my dog to the toilet or feeding my birds, I 'pay for it' and I worsen the longer I'm performing the activity or the more activities I do, and that's pretty immediate with functioning decreasing the more I'm doing... so basically as the day progresses, until I have to lie down.

This seems worse if I stand still or there is a lot of movement/exertion required - washing dishes, chopping veg etc. It usually eases up a bit each 24 hour cycle so after I sleep at night (if I can), then the next morning I usually have reached my baseline of functioning again. Thus the cycle continues and is only plunged into chaos if I (accidentally) induce the traditional delayed onset PEM.

This sounds very familiar to me. I also worsen the longer I'm performing an activity, and that's pretty immediate. If I manage to sleep, I will be okay-ish the next day. If it takes me two or more hours to fall asleep, that's the first sign that it will take me several days to recover. Does that sound CFS-typical?

Sorry if I sound stupid, I've been living with this dreadful disease for six years, and I've talked to many doctors and people with CFS, but I always felt like my PEM was very untypical (although some of my other symptoms and bloodwork are very typical. Apart from how I experience PEM, I suffer from little cognitive impairment. On bad days, my concentration is poor and I struggle to follow discussions, and I do know what sensual overload is, definitely. But I don't have brain fog as such. On the typical symptoms side, I have a lot of pain - headache and muscle pain in my neck/shoulders- , feel feverish after even five minutes of gentle yoga, and have all the immunological symptoms. And the beginning, mono, is a classic I guess.)

When I first became ill, all I noticed was an immediate reaction to exertion that made me feel "worse" over and above a general, constant, background sensation of the flu.

I felt that everyday, so there was no way to connect it to exertion on the previous day - which was an improbable connection to make anyway. Who would expect to feel amplified immune sensations 24 hours after some kind of exertion?

It was only after I had been ill for a few years, and perhaps I was either somewhat better or the daily feeling of ill health had become the "new normal," that I began to notice that 24 hours after some kind of exertion I had that weird "coming down with something" sensation which makes you feel "wiped out."

So, I guess I'm saying that it may be that when your "background level" of "malaise" is already high, it may be more difficult to detect the delayed sort of PEM ~ or maybe delayed PEM doesn't manifest right away for some people.

I've tried to make that connection many times, written a log etc., but I still don't seem to be able to make a connection. If I still feel "normal sick" the day after exertion, I don't expect to get worse.

Hang in there bud and take it as easy as you can! Do you have night sweats? I guess that goes away after about 7 years. That happened for me, actually maybe 6 years

Oh yes, I do have night sweats... even after 6 years :-/ So I'll wait until Christmas and see if they go away ;-)

You're all true heroes..

 

[HipsHops]

My functional level is around 20% (i.e. moderate CFS) - I work some few hours a week from home, but am never symptom-free. Every physical activity (food shopping) exacerbates symptoms, as does socializing and emotional stress, but physical activity is definitely worst. I guess my cognitive score would be above 50, while my physical score would be way below 20.

 

[HipsHops]

Normal, which is why I have a list of activities and time limits next to them, which is the point where I start feeling crap immediately. Kitchen / housework, 20 minutes etc. Also get delayed PEM if I've just been generally overdoing it.

It's a smart thing to have a list of activities and time limits. I never really got to that point where I could tell for how long I could do an activity. It varies too much. I've generally gotten a bit better, especially after year five, so that I can actually prepare a meal in one go. I guess I should really appreciate that and not take it as granted, it hasn't always been like this.
I'm not really good at pacing I have to say. At least it doesn't feel like I'm good at it. So I guess I don't really notice when I've gone into a period where I'm "generally overdoing it".

Over my moderate years I found that I could sometimes lessen a bad delay by resting up extremely.

What do you mean by "resting up extremely"? I'm trying the same, e.g. I do nothing but rest the two days before I'm going on holiday. What is your experience in terms of days/weeks?

@HipHops we have similiar experiences of PEM. From what I have read in this forum these experiences seem pretty common for those of us with mild cfs. Unfortunately there doesn't seem to that many threads relating our sub-group's experiences. I will link a thread I believe had a lot of experiences I could relate to even though working full time is probably impossible for me haha: http://forums.phoenixrising.me/inde...-or-close-to-what-is-life-like-for-you.37546/

Having read the first page of that thread (will read the rest later) that sounds a lot like how I was doing the first four years with CFS. It was hell. I went from work to bed, was on part-time sick leave most of the time, worked a lot from home etc. Eventually I gave up work, and didn't work for a year. The emotional part of that was easier than I thought. That year off work taught me that work doesn't define me as a person. I'm working a tiny little bit from home now, but I'm not sure yet whether that's a smart thing to do. So I guess my functional level is a lot lower than what people describe in that thread.

 

[CantThink]

My functional level is around 20% (i.e. moderate CFS) - I work some few hours a week from home, but am never symptom-free. Even physical activity (food shopping) exacerbates symptoms, as does socializing and emotional stress, but physical activity is definitely worst. I guess my cognitive score would be above 50, while my physical score would be way below 20.

I would say cognitively I have (nearly) always been better than I am physically.

I think sometimes it's also harder to quantify the cognitive impairments. For example, I have mentioned on here before how hard it is for me to do mental arithmetic due to inability to 'hold numbers' in my mind while calculating, but this took me a long time to even realise. Most of my conitive challenges are things that have taken me years to recognise. Another example, I have to learn by rote, endlessly drumming the same facts into my brain as my memory is poor. Yet my long term memory is over sharp - I can remember many events of years ago in clear detail (much to the bemusement of others!).

The other thing is, if I'm physically worse - as in experiencing some form of PEM - then cognitively I'm gonna be proportionately worse. Problem is, as I'm always feeling so intensely physically bad during those moments of course my focus is, and has been, on that.

I don't know about you, but generally I've coped cognitively better as I have been able to rely on the things I'm better at - writing, verbal expression, humanities and so on. If I try to read a scientific thread in here... I haven't an hope! I can't understand or follow a word of it!

With the physical impairment it is such that I can't play to my strengths so easily... There is no exchange for lack of energy (except perhaps occasionally dangerously running on adrenaline). I can't get rid of the pain. I can't exchange the insomnia for anything else or hide the impact it has on me. I can't make my GI tract or ANS function etc etc. It is far less easy to hide or to compensate for. So I think for me this is why I've tended to leave the cognitive aspects unacknowledged.

 

[Sea]

I don't know how I'd do the second day compared to the first day though. My best guess is that I'd do equally well, because the test wouldn't last long enough to trigger long-term ("type 2") PEM

I think you'd find the test is far more sensitive than our own recognition of PEM in our body. I've read several accounts where people felt they did as well on the second day test as the first and were shocked to see that the results had fallen so significantly. Taking you to VO2 Max is enough to trigger PEM even if the test is not long.