Good thread, thanks.
Hi all,
1) When did your PEM started. At the same time of illness or later?
As far as I remember it *was* pretty much the start of the illness, but that is with hindsight, I think it took me a while to realise the pattern, as it was so alien to have viral type symptoms (or mental symptoms) in response to over-exertion and particularly to get it a day or more later.
2) What does your PEM feels like.
My "typical" (in so far as anything with this condition is ever predictable) profile after a period of significant exertion is:
Day zero (day of exertion): to feel "normally" tired straight afterwards (I believe this is getting a little worse over time but that part only may actually be deconditioning). Note that if I totally overdo it I do get extreme symptoms at the time, but I am talking about exertion beyond my "long-term envelope" but stopping before reaching "short-term envelope".
Day one (day after exertion): to feel more physically exhausted with some flu-like symptoms and some neurological symptoms
Day two: to feel worst physically, muscle pains, flu-like symptoms, also neuro symptoms will be kicking in severely now
Day three: the physical side is fading but neurological side is severe
Gradual fade from that over anything from 1 to 3 further days
I have probably made it sound more exact than it really is, but I am quite concious of the neurological aspects as I work from home as a programmer and I know from quantifiable changes in output how well my brain is working (or not).
Neuro symptoms include intense pressure on my skull and back of neck/top of spine, heavy head, inability to focus on mental tasks, poor choice selection, inability to make choices at all, clumsiness (frequently break crockery), irritability and "thinking through treacle".
3) Is it constant or Comes and Goes, does it get better and worse.
Varies by amount I have done on preceding days. If I maintain very low activity for several days it will fade, but only until I next exert myself.
4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
Fairly direct relationship: high level of activity leads to bad PEM over several days (as above). Sustained low activity will allow it to gradually fade. I think it is probably worse when relapsing but more in the sense that you start from lower level so dip further, not like it has ever been less than pronounced, with possible exception of a month or two remission last year.
5) Do you get any sign that PEM is coming and are you able to avoid?
I get "wired" and wobbly if I do too much but by the time I get those symptoms I am doomed to days of payback. I generally try to stop before I reach that point (what I call my short term envelope), but that means basing it on gut feeling as there is no clear sign I have reached my "long term envelope" i.e. the level that will cause me payback over following days. I think some people refer to 80% rule, so I don't get signs to warn me when I hit 80% and should stop, only when I hit 100% and it is too late
6) Is there a particular time of the day where you are more likely to experience PEM.
I generally feel worst in the morning and mid-afternoon. I can get brief spells of ok in morning and afternoon depending on severity. I generally have a very bad patch around 5-7pm. I almost always feel considerably better in the evening/night (after about 8pm) and I am often tempted to switch my work day to then, but while my symptoms fade I am still "normally" tired by that time. All the above can change if I get up early and have to do something physical first thing, that can shift my whole day around in unpredictable ways.
I am not sure I am describing the same PEM as you btw, I am generally referring to "delayed" PEM, where I suffer over 2-4 days for high activity level on one day. The more immediate reaction to excess activity I try to avoid and besides find less of an issue (purely because of the relative duration). When I do push myself right out of my envelope the immediate symptoms will generally be those a "normal" person would get after exercise but grossly out of proportion - 10 minutes playing cricket with my son in the garden being approx equal to a marathon carrying a rhinosaurus (sp?)
Additional symptoms (not consistent) - facial flushing (this is ironically the only thing my wife can usually spot), bowel issues (every which kind), occasional sharp headaches, muscle aches not in muscles I have used, cranial pressure (back of neck is consistent but other parts of head from front to back are variable).