Delayed post exertional symptoms - Poll

[taniaaust1]

Many say that the delayed post exertional symptoms start anywhere from 24-48 hrs after exertion. I myself thou find that they often start 16-18 hrs after exertion from my base line state (that is if I get delayed symptoms). So thought a survey would be good.

Im also wondering if the worst the ME, if this symptom delayed response happens sooner?

Note.. I've made this poll a public one so your name will show where you voted.. ive done this in the hopes I can work out if the worst the ME, the sooner the delayed symptoms may come in... a myth or fact?

 

[alex3619]

I cannot answer this because the answer is all of the above. It depends on the trigger, the symptom and how well I was to start with. I pushed myself a bit earlier this week. The main response was a day and a half later (call it 36 hours). If I push myself long enough and I am exhausted to start with, then the response can be within an hour, or even suddenly. If the trigger is associated with dietary issues (food sensitivity) then it is modified again. Its hard to separate the different factors out. I think we are talking about something that is multifactorial, and so a range of answers is appropriate depending on exact circumstances.

So I think it can be almost immediate, or it can occur days later. I don't think its necessarily at one specific time.

Bye, Alex

 

[taniaaust1]

I cannot answer this because the answer is all of the above. It depends on the trigger, the symptom and how well I was to start with. I pushed myself a bit earlier this week. The main response was a day and a half later (call it 36 hours). If I push myself long enough and I am exhausted to start with, then the response can be within an hour, or even suddenly. If the trigger is associated with dietary issues (food sensitivity) then it is modified again. Its hard to separate the different factors out. I think we are talking about something that is multifactorial, and so a range of answers is appropriate depending on exact circumstances.

So I think it can be almost immediate, or it can occur days later. I don't think its necessarily at one specific time.

Bye, Alex

Sorry alex.. I should of made it more specific.. I was trying to find out from the time going from ones individual baseline state (whatever that is in a person) rather then in an already partly crashed state, where as its then post exertional symptoms will kick a person sooner.

Wasnt asking about symptoms which are triggered by eatting (or food intollerences).. but rather "post exertional" ones eg after physical or brain work.

Im hoping people will just put in their most common time for their delayed symptoms to come in as yeah I completely agree it can certainly vary even in one person. So do you think that the worst someones "baseline state" is, the faster the delayed post exertional reaction may occur? or do you think individuals base line states are unrelated to the speed of that occurance?

thanks

 

[alex3619]

Hi Tania, I do think that the baseline state modifies the speed of reaction, as does the intensity of the trigger. So do co-occuring factors including chemical intolerance. Its all together in my opinion, but I only have my own experience to go on, other's experience may be different. We tend to vary a lot in so many things.

If I push myself only moderately, and started out feeling OK, I tend to trigger about 24-36 hours after the event. If I keep pushing (as when I move house) then I can trigger within an hour, but I am already exhausted to start with.

Bye, Alex

 

[Mij]

Many say that the delayed post exertional symptoms start anywhere from 24-48 hrs after exertion. I myself thou find that they often start 16-18 hrs after exertion from my base line state (that is if I get delayed symptoms). So thought a survey would be good.

Im also wondering if the worst the ME, if this symptom delayed response happens sooner?

Note.. I've made this poll a public one so your name will show where you voted.. ive done this in the hopes I can work out if the worst the ME, the sooner the delayed symptoms may come in... a myth or fact?[/quote

Presently and for the last 6yrs my PENE also starts around 16 hours after. but 10yrs ago when I first started getting PENE it would take 24hrs so it changes over time.

 

[Mij]

I forgot to mention that if I'm feeling viral the PENE will come on a lot sooner even after very moderate exercise. Normally I can power walk 1 hour every 3 days and feel ok the next day, but if there is a viral thing starting up (sometimes I'm unaware of it starting) then PENE could start within the next 2-3 hours.
So it also depends on the particular virus or whatever it is that is triggering my immune system. I don't always experience PENE when I have viral symptoms though so who knows.

 

[taniaaust1]

Post 6, the last two lines of Mij's post was her reply.. the rest was my quote. (Mij if you see this and dont know why your post did that.. that's happened cause you missed the ] symptom where it says quote.. the ] should be right at end of the word quote].

Thanks Mij.. Id never thought much about that changing over time. I cant remember how mine was in the past, maybe cause I was just real sick all the time.l. so like a permanent crash state.

Interesting thing to think over.. Viral symptoms causing PENE to happen faster.

 

[Mij]

ok thanks, Taniaaust1.

I've always wondered why is it I can feel viral at times and not get PENE after moderate exercise and yet other times I do and very quickly and severe, I also get neurally mediated hypotension which is always virally induced. My simple thoughts on this is that my intial onset was a specific neurological virus and when that reactivates this is the one that causes PENE, yet other immunological triggers, whether it's flu season or whatever dont' affect me that much.

What was your intial onset? viral? was it sudden or gradual.

 

[Sparrow]

If I've badly overdone it, I'll get some really strong symptoms right away, or shortly thereafter (usually muscle weakness, particularly in my legs; the feeling that I'm 200 pounds heavier all of the sudden; having difficulty standing without help, etc.). But the major, hit-by-a-truck, flu-from-hell, can't-lift-my-head-up crash hits the next day every time. Around 24 hours is usual. It used to be closer to 18. Have never had it show up much later than that, and have never had the full crash hit the same day (although the immediate symptoms can be pretty severe too). I'm classified as "severe" (bed bound).

 

[Mark]

Great idea Tania.

 

[taniaaust1]

ok thanks, Taniaaust1.

I've always wondered why is it I can feel viral at times and not get PENE after moderate exercise and yet other times I do and very quickly and severe, I also get neurally mediated hypotension which is always virally induced. My simple thoughts on this is that my intial onset was a specific neurological virus and when that reactivates this is the one that causes PENE, yet other immunological triggers, whether it's flu season or whatever dont' affect me that much.

What was your intial onset? viral? was it sudden or gradual.

Yeah.. it can be confusing as I sometimes dont get the post exertional thing too even if I pushed myself hard.. in which case my illness may really kick in immediately with no delayed time for it to start. All I know is exertion is going to make me sick whether right away or later on.

My own onset I describe as both gradual and sudden onset. It was sudden as I suddenly got extremely sick (in bed with viral symptoms for almost a week) but I kept recovering from this.. it happened over and over more frequency.. like viral reactivation (with complete wellness between the bouts of it, no limitations between it) till it got to the point where I had this illness full time.

So where can a person who had an onset like this say the ME/CFS truely started.. at the first eposide of the "unknown viral illness" (high fevers, swollen glands, flu like aches, malaise etc)? when it only happened every 2-3 mths but I was left healthy the rest of the time... or is my starting point where the illness became full time (which happened after about a year) and in which was then triggered from physical exertion too (before that my illness was only triggered with severe stress and too many late night incidences ..where i must of run my body down and something dormant must of been flaring up.. and only lasted a week or less each time.. my body was able to keep fighting whatever this illness is.. off for the first year.)

* I had severe EBV and was bedridden for 10 weeks with that over 10 years before but recovered. I believe that ME/CFS is somehow related to EBV and whatever predisposed me to getting severe EBV also predisposed me to ME. Possibly a TH2 dominant immune system.

 

[Sushi]

I can't really answer cause it varies. I'd guess that mental efforts (studying for a course, working on a project that requires thinking) brings a faster reaction than overdoing physical activity.

For instance, if I study too long, I am--all of a sudden--wiped out for the rest of the day. But if I do a bunch of errands and am on my feet for too many hours, I won't feel it until the next day.

I can't correlate this with periods when I have been more or less sick.

Sushi

 

[Jarod]

I think agree with Sushi but can't remember.

I don't push it physically often because my mental constraints usually signal for me to stop before the physical stuff.

 

[Mij]

Yeah.. it can be confusing as I sometimes dont get the post exertional thing too even if I pushed myself hard.. in which case my illness may really kick in immediately with no delayed time for it to start. All I know is exertion is going to make me sick whether right away or later on.

My own onset I describe as both gradual and sudden onset. It was sudden as I suddenly got extremely sick (in bed with viral symptoms for almost a week) but I kept recovering from this.. it happened over and over more frequency.. like viral reactivation (with complete wellness between the bouts of it, no limitations between it) till it got to the point where I had this illness full time.

So where can a person who had an onset like this say the ME/CFS truely started.. at the first eposide of the "unknown viral illness" (high fevers, swollen glands, flu like aches, malaise etc)? when it only happened every 2-3 mths but I was left healthy the rest of the time... or is my starting point where the illness became full time (which happened after about a year) and in which was then triggered from physical exertion too (before that my illness was only triggered with severe stress and too many late night incidences ..where i must of run my body down and something dormant must of been flaring up.. and only lasted a week or less each time.. my body was able to keep fighting whatever this illness is.. off for the first year.)

* I had severe EBV and was bedridden for 10 weeks with that over 10 years before but recovered. I believe that ME/CFS is somehow related to EBV and whatever predisposed me to getting severe EBV also predisposed me to ME. Possibly a TH2 dominant immune system.

Yes your onset is difficult to pinpoint since you had recovery periods, but I think "recovery" is more of a remission in our case.
For me I had a sudden onset but knew something was different even though I was well enough to attend school etc. with minor symptoms, mild sore throat, ear and stomach grinding. Over 8 months I started to experience lack of stamina and not what I would describe as fatigue. I went downhill from there and could no longer walk or stand upright within a short time later. I did not experience any cognitive problems or PENE for 10yrs.
When I started improving health wise and getting involved with more activities the cognitive and physical PENE started.

 

[MeSci]

What a shame this poll has closed after so few responses. Is there any way to reopen polls? It's an important issue, I think.

The delay does seem to vary according to how well/ill (some of) us are, but if we voted according to how we are at the time, I still think it will be useful.

 

[Sherlock]

What a shame this poll has closed after so few responses. Is there any way to reopen polls? It's an important issue, I think.

The delay does seem to vary according to how well/ill (some of) us are, but if we voted according to how we are at the time, I still think it will be useful.

Since some people are saying that they cannot answer accurately because of the way the poll is framed, it might be better to rethink it and post a new reworded poll.

I fact, I'd been thinking that anyone who wants to post a poll should first post a Request For Comments about what the poll should exactly say. Poll replies are kind of a limited commodity, especially here - they shouldn't be used up in figuring out how the poll should be constructed, that should be done separately beforehand.

Also, it would seem to be a rare circumstance wherein a poll should be closed after a time limit. But btw, this one is not closed.

 

[MeSci]

Since some people are saying that they cannot answer accurately because of the way the poll is framed, it might be better to rethink it and post a new reworded poll.

I fact, I'd been thinking that anyone who wants to post a poll should first post a Request For Comments about what the poll should exactly say. Poll replies are kind of a limited commodity, especially here - they shouldn't be used up in figuring out how the poll should be constructed, that should be done separately beforehand.

Also, it would seem to be a rare circumstance wherein a poll should be closed after a time limit. But btw, this one is not closed.

Oh no - foggy overwhelmed brain - I already voted!

The idea of asking for comments first is good in principle, but you can end up with so many conflicting views that it gets very difficult - if not impossible - to figure out how to word it. I tried this once and it just got too complicated!

I thought this one was quite good actually.

Anyway - it's been bumped now so hopefully some more people will vote.

 

[Sparrow]

Just as a side note, the mack truck of symptoms always hit me pretty much exactly 24 hrs following overexertion, but since starting Valcyte, it is sometimes closer to 48 hrs now. Not sure if that's significant or common, but it seemed relevant to mention.