Honestly, it's like we should wear sandwich boards of it or something; it's so impressive/conclusive.
PEM/delayed fatigue - cardinal symptom?
- Thread starter Sasha
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Honestly, it's like we should wear sandwich boards of it or something; it's so impressive/conclusive.
How about a T-shirt?
Well, that's a good note to go to sleep on! And look, your next post is your 100th!
I love silly. I need more silly in my life!! Keep up the good work, Justy!
lancelot
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I had a run-in with an NHS person a few weeks ago about CFS vs ME. I was trying to argue that it was no good her trying to get me to do GET because the evidence was based on people with an ill-defined fatigue syndrome (CFS, probably Oxford criteria) rather than what I'd got (the neuro-immune disease ME). I'm seeing this person again (last time, I hope) next week and would like to be better prepared.
My impression is that the 24-48 hour delay in profound fatigue following the activity that causes it is considered as a cardinal symptom (i.e. you have to have it or you don't get the diagnosis) of ME. My questions:
1. Is it delayed fatigue rather than PEM that's the cardinal symptom? Am I confusing two things? I'm assuming PEM = feeling not just tired but flu-ish after exertion, but not necessarily delayed.
2. Where have I got delayed fatigue as a cardinal symptom from? Is it the Canadian Criteria?
3. What's the history of delayed fatigue being adopted as a cardinal symptom? How does something get chosen by researchers to be a cardinal symptom and rejected by others - that is, what's my argument for saying that I have "proper ME" rather than just unexplained fatigue, because my fatigue is delayed?
4. Is there any evidence on what proportion of NHS-defined CFS patients have ME?
Embarrassed not to know this stuff already!Would be very grateful for references/links to any academic papers, including the latest systematic review the NHS is basing its training of personnel on.
PEM is a must sign for everyone with CFS/ME, but other disabling diseases can have PEM as well. think of someone with congestive heart failure or sickle cell anemia going for a short walk and crashing into bed for days. I believe Delayed Post Exertional Fatigue(DPEM) is the cardinal sign for CFS/ME. It is more disabling and so much harder to figure out what makes you DPEM in my opinion.
C
Cloud
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George: Thanks for the graph. I had it saved on my pc but it was lost during that last infection.
Justy: No doubt on the insanity thing!! I have done it 100's of times. Actually after 17 years, I'm sure it's in the thousands. Yep, I'm insane alright. The problem is that it really feels ok to go for it. It's a tough one to learn and for others to understand.
Justy: No doubt on the insanity thing!! I have done it 100's of times. Actually after 17 years, I'm sure it's in the thousands. Yep, I'm insane alright. The problem is that it really feels ok to go for it. It's a tough one to learn and for others to understand.
It really does make it hard to establish an activity baseline for yourself. I'm going to have another go at Bruce Campbell's energy envelope stuff but this time keeping proper records in the hope of seeing what causes me DPEM.
Does anyone else ever have the weird problem of not having DPEM on odd occassions? in other words you have it all the time but sometimes dont?
this has happened to me once or twice. One day last summer, i ws so pissed off with being ill that i decided i wasnt going to be anymore. I got really self destructive and did about 2 hours heavy gardening(i dont know how!) i was in such a rage at the time and it was almost as if i had discovered a unique form of self harm. Once i had calmed down i got really worried about how i was going to feel in a few days time, or even wether i may have done irreperable damage - but no crash came (although i was already not ok)
Strange.
Leela - i agree with the silly thing. i love having a good laugh, and it is often so lacking in my life right now. I hate everything being so serious all the time!
this has happened to me once or twice. One day last summer, i ws so pissed off with being ill that i decided i wasnt going to be anymore. I got really self destructive and did about 2 hours heavy gardening(i dont know how!) i was in such a rage at the time and it was almost as if i had discovered a unique form of self harm. Once i had calmed down i got really worried about how i was going to feel in a few days time, or even wether i may have done irreperable damage - but no crash came (although i was already not ok)
Strange.
Leela - i agree with the silly thing. i love having a good laugh, and it is often so lacking in my life right now. I hate everything being so serious all the time!
Wonko
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justy - yes I've experienced it - the should have got PEM'd but didnt syndrome - not often but it has happened - the only difference seems to have been intensity - last time was carrying heavy things upstairs - do it once and stop = PEM - do it for an hour = no PEM - near heart attack but no PEM - very odd
it should be noted, just in case anyones mad enough to try carrying grand pianos up and down stairs all day, that I was aware that a delivery was turning up and had both been extensively resting for days before hand and was irritated/angry/uncomfortable with having to be 'on' for hours because couriers turn up if, as and when they feel like it - and wont lift a damn thing themselves even when I pay extra for delivery to my door - so both anger and relief that it would soon be over were being experienced - so limited duration anger may have a protective effect in some cases ( an yes despite the rest I wasnt exactly on top form before and fully expected and had prepared for a significant crash - that never came)
it should be noted, just in case anyones mad enough to try carrying grand pianos up and down stairs all day, that I was aware that a delivery was turning up and had both been extensively resting for days before hand and was irritated/angry/uncomfortable with having to be 'on' for hours because couriers turn up if, as and when they feel like it - and wont lift a damn thing themselves even when I pay extra for delivery to my door - so both anger and relief that it would soon be over were being experienced - so limited duration anger may have a protective effect in some cases ( an yes despite the rest I wasnt exactly on top form before and fully expected and had prepared for a significant crash - that never came)
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Cloud
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The severity of my PEM is commensurate to the level of stress maybe 50% of the time. The other 50% is unpredictable; The stress tolerance boundaries fluctuate. That together with it being delayed makes it extremely difficult to develop any consistent boundaries for pacing. I too will get a free pass once in a while with no PEM following mega stress, but it's rare. I have also learned that my energy envelope will close in smaller if I don't do as much as I can; If I unnecessarily lay around for 2-3 days, I can get PEM from much less activity than I did before that. So it works both ways for me.
lancelot
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Now that you got a pedometer, it should be easier to figure out what causes your DPEM at least physically. Alcohol, some supplements, some meds, foods, stress, random unknowns, etc can all cause it. At least i can try to control my physical cause to DPEM. On a good day which is 1-2X/week, i can walk 2000 steps or 20minutes in a 24hour period w/o PEM or DPEM. But if i should extend that to 2500-3000steps or 25-30min, i will crash the next day i wake up or DPEM. I have very slowly improved from 1000 steps or 10mins 2 years ago.
lancelot
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yes, sometimes you just can't predict the DPEM. You can do everything right and DPEM or do everything wrong and not DPEM. It is this random or unpredictable DPEM's that is really really annoying!!!
SOC
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Nice looking graph from the Drs Light, but..... erm...... What's "mRNA (+SEM)" mean? And Sensory, Adrenergic, and Immune whats? Many of those names are familiar (IL6, TNFalpha, etc), but I must be completely brain-faded tonight because it's not making any sense to me.
Those adrenergic whatsese are through the roof. What does that mean?
Sickofcfs, who is just plain dumb tonight.
Those adrenergic whatsese are through the roof. What does that mean?
Sickofcfs, who is just plain dumb tonight.
I am very interested in PEM and DOMS (delayed onset muscle soreness). For the past few months, my fatigue diminished a lot, while muscle pain after excercise remained although with variable intensity - from 1.5 days as best to 5 days as worst, starting 24 hours almost sharp after the finished exertion previous day. I was 'researching' what exactly causes muscle pain and found some studies about the effect of bradykinin, which is released in excercised muscle. A bradykinin inhibitor injected into muscle 30 min prior to excercise inhibits pain. The interesting thing it is a vasodilator and one of the participants in NO cycle, helping in opening the blood-brain barrier. Open BB barrier seems to guarantee brainfog or simply brain poisoning. Still, I have no understanding if delayed fatigue and muscle pain is relevant to all people, because many people get symptoms immediately as you commented above.
Another substance which is released in the muscle is nerve growth factor. An injection into the muscle itself will soon cause muscle pain (without having had an excercise). As this 'thing' seems to be good, it protects the brain in ppl with alzheimers, the more interesting connection for me is kinins which participate in the kinin-kallikrein cycle.
I dunno if it is statistically significant (I had a couple spontaneous cases like that without treatment too), but after starting treatment with antibiotics for b.hominis infection, my last walk, which was the hardest thing I did this year, resulted in 0 pain, although I was tired a bit.
So I have no understanding if it is some usefull idea, among so many present allready, I have a feeling it is impossible to read everything about CFS, unless you read everyday. But I would be happy if you reflect if it makes any sense.
Another substance which is released in the muscle is nerve growth factor. An injection into the muscle itself will soon cause muscle pain (without having had an excercise). As this 'thing' seems to be good, it protects the brain in ppl with alzheimers, the more interesting connection for me is kinins which participate in the kinin-kallikrein cycle.
I dunno if it is statistically significant (I had a couple spontaneous cases like that without treatment too), but after starting treatment with antibiotics for b.hominis infection, my last walk, which was the hardest thing I did this year, resulted in 0 pain, although I was tired a bit.
So I have no understanding if it is some usefull idea, among so many present allready, I have a feeling it is impossible to read everything about CFS, unless you read everyday. But I would be happy if you reflect if it makes any sense.
HI Cloud, yes, i get this too. A few months ago i tried to get well by just resting, but this led to my PEM being much worse, also my immediate malaise increased. i have to find a good balance between too much and not enough.
SOC
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Isn't that symptomatic of post-viral dysautonomia? I'm not sure about that, but it might be worth checking out the Mayo Clinic info on dysautonomia.
I'm just the opposite. My PEM is much worse if I don't rest a lot. I have a persistent HHV-6 infection, though, so maybe that makes a difference.
Two weeks ago I came down with a bad acute viral infection (exhaustion, malaise, running nose, sore throat & ears) and had to go properly back to bed for about a week. It was ten days before I tried to sit normally in a chair again or leave the flat; previously I could sit for an hour a day and maybe walk ten minutes but now it's provoking PEM and I'm concerned that I've increased my level of dysautonomia by lying down so much (didn't have a choice, of course!). Or it may just be that the virus hasn't properly cleared my system (this is Day 12). I'm trying to increase my ability to sit from scratch by doing ten minutes several times a day (four yesterday) and building up gradually.
SickofCFS, I had a look at the Mayo Clinic site and couldn't find anything very specific (I just found this). I wondered if there was anything on post-viral dysautonia specifically.
Wonko
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at day 12 it's quite likely you have post viral fatigue - I dont get 'normal' virus's (viri?) very often but it's not unusual for me to be essentially non functional for a month or 2 after the not being able to move phase is over - potter, make tea, make sandwich etc is about the limit of my abilites during that period with the rest of the time being essentially bed or sofa bound - it can take time to recover especially with you werent 'healthy' before hand - sorry
give it a little longer - if you have to get PEM'd then at least get a meal out of it rather than just 10 minutes sitting up
give it a little longer - if you have to get PEM'd then at least get a meal out of it rather than just 10 minutes sitting up
at day 12 it's quite likely you have post viral fatigue - I dont get 'normal' virus's (viri?) very often but it's not unusual for me to be essentially non functional for a month or 2 after the not being able to move phase is over - potter, make tea, make sandwich etc is about the limit of my abilites during that period with the rest of the time being essentially bed or sofa bound - it can take time to recover especially with you werent 'healthy' before hand - sorry
give it a little longer - if you have to get PEM'd then at least get a meal out of it rather than just 10 minutes sitting up
Hi Wonko - luckily I usually find with acute infections that they last pretty much 10 days, during which I feel uniformly awful, and then they lift very rapidly in the course of a day or two. This one is really outstaying its welcome. I'm sorry that yours go on for so long.
Good idea about the meal, though!