Hi all,
There is a lot of discussion on PEM (PENE) lately, and I would like to see if there is a pattern and how different is from person to person.
great discussion
1) When did your PEM started. At the same time of illness or later?
PEM didnt happen for me until after the first 9mths-1 year of this illness. It started only AFTER the accute bad bouts of flu like ME I used to get .. I'd be in bed with what seemed to be a virus and with no after effects with each time it hit in that first year.
PEM only came in once my illness was in a permanent state and not an on and off illness no more.
2) What does your PEM feels like.
If this question is asking how we crash.... in my case that it is impossible to know every time I crash, what form the crash will take. Its different all the time and there has been many different like stages my illness has gone throu. Sometimes I crash like virally (sore throat and feeling feverish and sometimes do get an actual fever. ..this crash is like my immune system has been knocked down some (P.E.N.E)..
other times I crash more neurologically..eg shaking, twitches, unequal pupils, hyperreflexia etc
while other times I can crash in like exhaustion state but that is nowdays that is far less common to me.
I'll share my most recent but short crash (Ive just spent the past 36 hrs in bed, not sleeping but just resting.. feeling completely fine but knowing if I got up I'd probably crash in some way again.. so resting to get ahead of being hit with symptoms and stop symptom(s) of some sort or another from happening.
(right now Im feeling amazing after 36hrs spent in bed, its left me less vulerable to my ME symptoms).
I havent had a crash like this for a while but anyway here's the last one from 2 days ago. It was day (day 2) of doing more then I normally do (the day after being taken shopping). This crash manifested in a period in which I DIDNT feel physically unwell (so I wouldnt call it malaise), DIDNT feel muscle or body tired (so I wouldnt call it exhaustion) but rather just SUDDENLY started to feel EXTREMELY sleepy, to the point tears were running down my face, constant yawning and starting to fall asleep in a chair while being talked too.
I went from a non sleepy state to this state in probably less then one minute period, it was like an instant hit thing
Thou Id only been at their place for less then 2 hrs, I had no choice..but to ask if I could go to sleep somewhere (as I'd got a lift with someone who was going there.. I couldnt ask to be taken home).. I just couldnt stay awake.. I then slept for about an hour on their couch and woke up after quick nap, completely fine again...lasted out the next hour feeling great, till the others were ready to leave and take me home (still felt great then once home, no symptoms)
That may of been a crash from doing shopping day before.. hard to say ..or maybe just chatting for a couple of hours that day did that (I mostly was just listening) but my whole ability of my body be handle activities would of been lower then it normally is due to going shopping day before.. thou that "NEED to go to sleep" kicked in suddenly and went away suddenly (once I'd slept an hour, it may of been less).
I guess that is a kind of PEM..thou its hard for me to call it PEM as it is so unlike the PEM I used to get and with no malaise. If I called that PEM.. I dont know it seems wrong to do as it isnt quite right. Im wondering what others would call what I described above.. that crash was more like I have some kind of sleeping disorder forcing me to have to sleep kick in..
As it WASNT exhaustion or worn out tiredess, getting up and walking around was helpful a little for this individual crash symptom but a sleep is the quick cure for it...
this is a symptom which for me also would of probably went away in a couple of hours even if I hadnt sleep and had managed to push myself throu that 2 hr bad patch. I know that from the past when I have managed to push throu THAT symptom. (That is one of a few symptoms Im safe to push throu it IF I can manage it, its often so intense its easier just to go straight to bed).
3) Is it constant or Comes and Goes, does it get better and worse.
It all depends on the type of crash ive had at the time.
4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
ME symptoms certainly get worst when relapsing... but the amount Ive relapsed dont necessarily thou mean more PEM.. it could just mean more of other ME symptoms eg I can crash in a complete kind of neuro way rather then exhaustion way.. eg constant tremors and seizure like activity, unconscious bouts. Neuro crashes are bad as they take me longer to recover from (2 weeks for improvement at times).
A crash to me may mean that the amount of the types of symptoms I get may have just quadrupooled which may or may not come in with tiredness or feeling exhaustion.
5) Do you get any sign that PEM is coming and are you able to avoid?
Yes I can avoid much of time most ME crashing. For example I know I wouldnt have ended up having to sleep while trying to visit someone a couple of days ago.. if I hadnt been shopping the day before.. it happened just under 24hrs of when I'd been taken shopping..4pm). Thou I felt completely fine when I was taken to visit them.. symptom took 2 hours of sitting, mostly listening before it suddenly hit.
It was COMPLETELY AVOIDABLE if I hadnt done more then I usually do for 2 days straight.
Im actually thinking more about that sleep incident the other day.. there was a warning sign that I was overdoing it before that hit.
I felt very cold, more cold then I should of been. I asked for them to get me a jumper which they did and I was still very cold with the jumper, I was unable to warm up and they didnt offer to get me a coat, just turned to me and said thou I was shivering.. "you cant still be cold" one of them was wearing a t-shirt and the baby was running around with no leggings on.
My other warning signs that my condition is about to change is feeling feverish or a fever or getting a sore throat.
6) Is there a particular time of the day where you are more likely to experience PEM.
umm .. probably later in the day.. my ME weaker (time Im more vulerable.. I dont mean like muscle weak) is probably between 3-9pm. Im better when first waken up (that is only once when fully awake..its like my energy does build up while asleep) and I have like a better period between 9pm-1am.
I think its all related to my screwed up circardian rythm which makes it more of an effort to be doing things between 2pm-9pm so hence more likely to lead to PEM if I push myself between those times.
A crash thou could happen ANYTIME if it is a post exerctional one... these can kick in for me anywhere from 13hrs to about 28 hours or longer after Ive done more then usual. The post excertional crash time, all depends on when Ive done the activity and how much I was able to do at the time (so based on the degree of the crash).
I still dont know exactly when Im going to crash but know its usually next day if Im going to crash eg day after shopping i know Im vulerable to getting some symptom or symptoms come in if I dont rest up.
Id like to see ME defined as post excertional "symptoms", rather defining which of the individual ME symptoms we are supposed to have worsening. Post exerctional crashes manifest is so many different ways.