How long does PEM take to kick in?

[ahimsa]

I've noticed that my sleep quality, which is always poor, gets significantly worse after a day where I pushed the envelope either physically or mentally. Results in more difficulty falling asleep, frequently waking up, and completely waking up early.

This is true for me as well. Whenever my sleep starts to get really bad then I have to rest a lot more for about a week for it to get back to my "normal" sleep. Even my current level of "normal" sleep is not great (waking up 6-7 times a night, never getting more than 1.5 hours of sleep at a stretch). But when my sleep gets to "horrible" (waking up 12-14 times per night, trouble breathing, feeling overheated, and finally getting out of bed because my heart beats faster lying flat than it does while sitting in the recliner) then I know that means it is time to rest a lot more--which I hate, but I have not found another option. My sleep got bad last summer but I've been pretty careful since then to rest a lot and it's back to my normal level.

I'm lucky that I fall asleep very quickly. I actually don't take any sleep medications. And even after I wake up in the night I can even fall back asleep without any problem (fixed a major typo) (no worrying or anxiety, for example). It's just annoying that I can't sleep more hours in a row.

It's a paradox to most folks that resting during the day more makes my sleep better. My doctor explained that, in my case at least, it is autonomic problems that are causing a lot of my sleep problems. When I do things during the day that aggravate my NMH (Neurally Mediated Hypotension) then it messes up my sleep. And this can accumulate over time somehow (not sure how). The meds that I take for NMH are helpful but they are not a substitute for resting and avoiding NMH triggers.

Edited to add - I hope this was not too much of a tangent from the original question about post exertional exhaustion and how to predict it. I have never been able to calibrate it down to the level of "x minutes of activity is okay" or when the PEM kicks in. For me it is more about avoiding those things that cause problems (standing, heat) than it is about the number of minutes of activity per day. I just have to play it by ear and take it one day at a time.

 

[Graham]

Ahimsa, your cellular quote just made my day!

 

[mellster]

Though I really dislike exercising early and sometimes feel poorly in the morning, the earlier I exercise during the day, the less it messes with my sleep and the more I can avoid PEM. I am trying to be done with any strenuous aerobic exercise by noon now and that seems to work better. I noticed that when I didn't crash the next day after pushing hard (HR > 180 for a couple of minutes) during the 20 minute cardiac stress test abd then I remembered I never PEM'ed after morning classes, only after evening classes. Again, I loathe exercise in the morning but it seems to alleviate exercised induced sleep disorder since there is a lot of time between the exercise and going to bed.

 

[Mij]

Getting good sleep never prevents me from getting PEM. For me, if I go over my boundaries I get PEM- period. Thankfully I know my boundaires now so it makes it much easier to prevent. If I do go over my limit the PEM starts in less than 24 hrs although there were a few times it started over the 24hr mark and caught me by surprise. If I have a virus then I don't do too much because this is the time I'm not so sure what I can or can't do.

I can never explain this to normal people because they just don't get it.

 

[ixchelkali]

I often find it is a running total of what one has been doing for past few days.. the day before and the day before that is also playing a part too so when trying to work out how much to do, one also needs to take in account the previous days activities as well. If you dont keep in account of previous days too.. it is hard to pace right.

That's very true for me, too. If I'm going to do something that takes more energy, like go to the store, I need to rest up for a couple of days in advance. If I try to do two days in succession, PEM is almost a sure thing. Or if I do just slightly more than ususal for several days in a row, that will bring on a PEM "crash."

It's like trying to budget your money, planning ahead for upcoming expenses, except that you never know how much money is going to be in your account.

 

[taniaaust1]

It's a paradox to most folks that resting during the day more makes my sleep better.

Same here resting during day helps my sleep better at night. If I start getting worst by not resting, I get wired and so so tired and sleep far worst.

 

[taniaaust1]

It's like trying to budget your money, planning ahead for upcoming expenses, except that you never know how much money is going to be in your account.

great quote to explain it.

 

[*GG*]

I'm lucky that I fall asleep very quickly. I actually don't take any sleep medications. And even after I wake up in the night I can even fall back asleep with much problem (no worrying or anxiety, for example). It's just annoying that I can't sleep more hours in a row.

It's a paradox to most folks that resting during the day more makes my sleep better. My doctor explained that, in my case at least, it is autonomic problems that are causing a lot of my sleep problems. When I do things during the day that aggravate my NMH (Neurally Mediated Hypotension) then it messes up my sleep. And this can accumulate over time somehow (not sure how). The meds that I take for NMH are helpful but they are not a substitute for resting and avoiding NMH triggers.

It's good that you fall asleep quickly, but sounds really bad that you do not stay asleep. Have you ever had a sleep study done?

I had 1 done a couple of years into my illness with only little REM sleep being found. I had another sleep study done about 1.5 years ago. I was going through a major flare up and had insomnia. I was found to (OSA) obstructive sleep apnea. I also had my Dr prescribe oxygen for me based on the results from the sleep study.

I have trouble falling and staying asleep (I have taken a few meds over the years, but seem to have found 1 that really helps me get some good rest, not as bad in the morning as in the past). I am doing much better in the pain arena, been having trigger point injections done, PT and massage. Tired of all the pain in addition to all the other syptoms!

GG

 

[ahimsa]

It's good that you fall asleep quickly, but sounds really bad that you do not stay asleep. Have you ever had a sleep study done?

Almost, but not quite. Last summer, when my sleep started getting bad, I went to a sleep specialist. Before ordering a full sleep study the doctor suggested a home screening test which was free. I'm not sure what Medicare covers as far as sleep studies so I thought "free" was a good idea.

I took home a device that you wear overnight. It measures air flow with a cannula and oxygen saturation with a finger probe. My oxygen saturation level was great (98%, I think?) so it's unlikely that I have any obstructive sleep apnea.

I did have some other problematic readings. I don't remember what they were, something about not breathing often enough. I'd have to check the report. But since it was not something that was obvious (the doctor never called to say I needed a follow-up, for example) then I never bothered with a full sleep study. I did feel that the home screening tool was worth it, though, since I was able to rule out any problems with oxygen saturation.

Since I can improve my sleep by resting more (it's annoying to force myself to rest but it works), and my sleep problems are not recognized by the sleep specialist (she didn't even have any speculation on what could be wrong), I'm not very motivated to go back to that doctor. When a sleep specialist treats mostly (only?) sleep apnea patients then I'm not sure they can recognize any other type of sleep problem.

After 21 years of illness, I guess I'm not very hopeful that doctors can do very much for me. With the exception of an abnormal tilt table test in 1995, which led to my discovery of Neurally Mediated Hypotension (a form of Orthostatic Intolerance), I've had little luck in finding anything wrong that doctors know how to treat. So, unless it is something VERY obvious (e.g., my gall bladder problems in 2006, surgery completely fixed the problem) I have not been very motivated to go to doctors.

I think that if I were motivated to spend the time/energy on this problem I'd probably go to a doctor who specialized in autonomic dysfunction rather than a generic sleep specialist. The sleep specialist I saw was yet another doctor who said "What's that?" when I mentioned that I have chronic OI (Orthostatic Intolerance). Since that time I keep a copy of the Johns Hopkins handout to give to doctors who have never heard of OI.

Of course, you can lead a horse to water but you can't make it drink. So, giving the doctor a handout, even if it is from a prestigious medical institution like Johns Hopkins, doesn't mean that he/she will read it or take it seriously. See http://forums.phoenixrising.me/show...POTS-questions&p=175876&viewfull=1#post175876 ...

Edit - I should add that several descriptions of chronic OI include "sleep problems" on the list of common symptoms. See http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 (bottom of the page) for an example list of symptoms.

 

[ukme]

My daughter has just got this PEM bigtime, and really hasn't suffered with it much before, but she seriously overdid things and now things are pretty bad. Is there anything in particular you all do to try and recover from it?

I think it's the adrenals that are completely shot, as she is just so tired all the time.

 

[ixchelkali]

My daughter has just got this PEM bigtime, and really hasn't suffered with it much before, but she seriously overdid things and now things are pretty bad. Is there anything in particular you all do to try and recover from it?

I think it's the adrenals that are completely shot, as she is just so tired all the time.

Aggressive rest therapy. That is, as much rest as possible. That includes rest from brain work, too, so not spending time on the computer, no reading, limited noise and light, not doing anything stimulating like talking on the phone or watching exciting TV or playing games. Just rest, rest, rest. It seems like the better I can do that the sooner I recover.

 

[meadowlark]

I can walk a block and a half about once a week. Otherwise, just shuffling around in the morning in order to bathe and comb my hair is all the activity I manage. Then it's back to bed. So for me, PEM has a different meaning.

Last week I more than doubled my block and half and made it five blocks--sounds insane, but someone I love who has Alzheimers was in bad trouble. At any rate, by the time I got back, my feet were barely getting off the ground, I couldn't raise my arms and I felt like I was walking through an invisible force field. I lay down and what I would call PEM began immediately and is still going on. For the first 24 hours my body felt like it was on high alert--very excited somehow--but was completely exhausted at the same time. This feeling of energy disturbance lasted twelve hours. Since then I've been weak as a kitten, and can manage a walk of only twenty feet. (Luckily, my apartment is teeny tiny.) And of course, I have fever, throat, migraines, lymph nodes and sleep problems.

But even ten years ago, when I was much more active--able to go out into the world for several hours--my PEM was immediate, always starting after an unexpectedly strenuous event. For instance, I once took a cab to the doctor's and we were held up by a parade, The upshot is that I had I to walk eight blocks I hadn't planned on. The PEM started while seeing the doctor. I had to lie down for the appt., (couldn't even lift my head), and the fever and lymph nodes began right in front him. There were advantages to having this happen right in the doctor's office, of course, as he could witness the actual onset. (Sadly, this doctor no longer practices. He developed .... chronic fatigue syndrome.)

For a while I doubted if what I was experiencing was actually post-exertional malaise, as it kicked on so quickly there was almost nothing "post" about it. But now I just shrug. This illness is sometimes very eccentric.

 

[ukme]

Thanks for the reply ixchelkali. I am hoping that once PEM is over things go back to how they were before..

 

[taniaaust1]

I lay down and what I would call PEM began immediately and is still going on. For the first 24 hours my body felt like it was on high alert--very excited somehow--but was completely exhausted at the same time. This feeling of energy disturbance lasted twelve hours.

I so hate it when that happens as you cant properly then rest.. that's the tired and "wired" feel.. completely exhausted but ones nervous system is on over drive, over stimulated.

(It makes me think of how little children can get when they get overtired... they start getting all hyped up and ratty in their behaviour where they just dont know what to do with themselves)