How long does your PEM last?

[MeSci]

My PEM is always delayed - by 24-36 hours at the moment, but it has been longer. This is the case when I have over-exerted for 2-3 days in a row too. It has never come on during exertion or immediately afterwards as far as I can recall. When I have over-exerted 2-3 days in a row, the PEM can be severe and force me to go to bed, but now that I know the reason for such debility I am careful to avoid causing it. Going more slowly works really well, and using a heart-rate monitor probably helps, although I don't use it often. After using it a few times I started to get a feel for when I was reaching my limit, and I am more aware of needing to stop. It's a bit like having a benign 'Big Brother' that I know is waiting to be consulted if I want to, and I will feel like I have misbehaved if I check my heart rate and find that it's too high!

Interesting about the malaise coming on during exertion, and the other coincidence re the blue skin colour.

How about this possibility - those who get these symptoms are perhaps less able than most to keep enough blood circulating to maintain normal skin colour, which would also make it harder to get oxygen to the mitochondria and to clear the lactate that accumulates due to anaerobic energy production?

So maybe you have especially low blood volume, or low endothelial nitric oxide (so that blood vessels can't dilate enough - and I believe we tend to have this problem in peripheral blood vessels), or poor cardiac function?

Perhaps you have a particular need to boost your fluid levels before activity (not forgetting that fluid intake should include electrolytes)?

 

[taniaaust1]

@oceiv sighs Im NOT doing well replying to a long post today. I just saw I missed a question you asked me.
" Is your left-side also worse with other symptoms?"

Yes my left side was worst with other symptoms, that side has has always been more affected at times eg I had left leg drag for a while and left foot which like flopped when I walked (tripping me over). That went on in my left side.

Strangely though I had issues 3 different times during the ME with my right hand swelling (its my only right hand which has ever swelled). It swelled up for no reason at all (I are right handed).. but anyway, when I get one sided neurological stuff in my legs, it tends to be left side (though with some things, both legs get affected at same time..eg I have this thing where both legs can just give out on me at once sending me crashing to the ground I badly sprained my ankle due to that last year).

 

[taniaaust1]

Interesting about the malaise coming on during exertion, and the other coincidence re the blue skin colour.

How about this possibility - those who get these symptoms are perhaps less able than most to keep enough blood circulating to maintain normal skin colour, which would also make it harder to get oxygen to the mitochondria and to clear the lactate that accumulates due to anaerobic energy production?

So maybe you have especially low blood volume, or low endothelial nitric oxide (so that blood vessels can't dilate enough - and I believe we tend to have this problem in peripheral blood vessels), or poor cardiac function?

What's really interesting about it is, the other and I get it on the one side .Does heart find it easier to get blood down one side then the other? Its true in my case I do have severely low blood volume.

Perhaps you have a particular need to boost your fluid levels before activity (not forgetting that fluid intake should include electrolytes)?

I cant do hardly no physical activity except get my own drinks and go to the loo. A support worker today had to make my bed, hang my washing up, make me a pot of stew, clean my toilet, do my dishes (and then leave while my house is still trashed as we were out of time.. all I managed was to clear off the table where I was sorting out paperwork for court the other day).

My level of physical capability isn't much higher then a fully bedbound persons. It's shocking how little I can do before I start crashing with the dysautonomia (my worst current ME symptom). I now have to wait a whole week before things can be done in my house again when the support worker comes again (and watch mess build up here all over the week eg dishes etc). It's hellish, I may not be in bed but how little I can do to keep myself out of hospital is hellish. Im slammed so fast and hard if I try to do things.

Electolytes don't seem to help me as I just pee them right out. (hence why I always need not one but two bags of 1 Litre saline IV whenever I end up in hospital).

 

[Mij]

I wonder if the fact that severe patients aren't often studied contributes to the lack of knowledge of how severe patients experience PEM and that a severe patient's PEM might be different from a moderate patient's PEM. At least, this was the case with me

Here's another one I never experienced PEM for the first 8 yrs of my illness. It began when I was feeling 80% improved and started running again. The first PEM episodes were . . . wth is this??? The PEM back then was milder than what I experience now. It worsened over the yrs because I just kept going and thought I was recovering when in fact I was making my worse (probably permanently).

It's definitely a mito issue combined with other dysfunctions. It'll be very interesting when we figure this all out!

 

[oceiv]

(Ironically?) I had PEM set in yesterday due to an unexpected stressor. I began a reply yesterday...bam PEM (not from the reply obviously). Will respond again after it ceases. This conversation has been most helpful.

@taniaaust1 @MeSci

 

[MeSci]

I have been pondering over people's variability with regard to PEM, including over time, so have started a poll here. It doesn't look at duration, just general variability between people.

 

[Mij]

@Mij - It's been awhile and I don't recall if I took more than 400mg Q-nol or whatever the ones are called that are supposed to be more absorbable. I think I'll go back to trying the regular kind at higher dose after reading this thread, though. Worth trying.

http://www.lef.org/Magazine/2010/2/Reverse-Mitochondrial-Damage/Page-01

I was just reading this:

They discovered that potentially deadly defects in human mitochondria, including molecular decay and membrane injury, begin to appear and can be detected nearly a decade before the onset of permanent damage to the DNA.3

More importantly, their analysis revealed that in its initial stages, mitochondrial dysfunction is reversible,enabling the life and health of cells to be prolonged at the molecular level. The key lies in early interventions to ensure optimal mitochondrial function before irreversible DNA damage occurs

 

[lazzlazz]

It depends how much I overdo and whether I go back to continuing to overdo as soon as a I can. If I go back to exerting as soon as it is bearable, the next crash is longer, and so on. If I keep overdoing it can last weeks. Sometimes I might be able to do a bit a few days in a row before the cumulative effects take hold, other times one go is enough to make it impossible to do more for days. If I do something one day I rarely am able to duplicate that amount of activity the next day. If I try it just leads into less and less ability over subsequent days.

If I really overdo like i did five years ago, the crash can keep on being more and more cumulative even though I cut back on activity. I haven't recovered but I guess that was a relapse not just PEM.

This is very similar to me. More overdoing over days = more likelihood of a longer crash. I don't have CFS that is as debilitating as some.
If I just slightly over do things (and haven't been overdoing things in the days previously), the crash hits in 24-48 hours and lasts perhaps 24-48 hours, if I can cut back on activity. If I push myself too long for a period of several days to a week (and can't cut back on activity), the crash will last 7-10 days or more. I've learned not to push myself for so long - I've made that a priority.

 

[RUkiddingME]

That sounds exactly how I feel nowadays when I have what is for me a mild PEM episode. I can push through a couple of days, and drag through the rest of the week if I sleep all the rest of the time -- evenings, weekends. The problem is that if I keep doing that, I never recover from the PEM; I'm always dragging through the day not doing my job as well as I like, and sleeping the rest of my life away.

So now I take the week off, or maybe cut my hours in half if I'm not really bad, and mostly stay in bed. That way I get past the PEM in 10 days or so. I've found I do best if I try to sleep as much as I possibly can. Daughter and I wondered (half joking, half serious) whether the sleep was actually helping the PEM or whether it was just allowing me to fast-forward through the worst misery of the PEM episode.

Hi SOC I was actually going to contact you about this. Are you still getting these episodes of 10 days of recuperation on the second round of Valcyte and do you bounce back to pre-crash state after the long rest? As you know I have been following closely behind you in terms of progress and I just had the best four months since getting sick 5.5 years ago. I am also on my second round of Valcyte. Two weeks ago I started to decline on a daily basis and can barely walk again and back to being bed ridden. I am just looking for some hope that I will bounce back from this. I am due to come off the Valcyte in July. Thanks for any input you might have

 

[Strawberry]

I am curious exactly what it means in the title "How long does your PEM last?"

What exactly defines the end of a PEM crash for everyone?

I feel I am in a constant state of PEM, that varies up and down based on stress and activity. If I wake up feeling like my legs are full of lead, and I am all ready fatigued as if I had the flu or ran a marathon, but I don't start sucking air as if I were 300 pounds overweight from climbing 6 stairs, is that still PEM?

I usually say I am in a PEM crash when I am at my worst. But realistically, my best isn't much different than my worst, I just don't start sucking air with minimal effort. I just feel minimally better...

 

[Mel9]

I am curious exactly what it means in the title "How long does your PEM last?"

What exactly defines the end of a PEM crash for everyone?

I feel I am in a constant state of PEM, that varies up and down based on stress and activity. If I wake up feeling like my legs are full of lead, and I am all ready fatigued as if I had the flu or ran a marathon, but I don't start sucking air as if I were 300 pounds overweight from climbing 6 stairs, is that still PEM?

I usually say I am in a PEM crash when I am at my worst. But realistically, my best isn't much different than my worst, I just don't start sucking air with minimal effort. I just feel minimally better...

Hi Strawberry
I am a lot like you I think? Every normal morning legs like lead, brain struggling, wish I could stay in bed. Fatigued and flu like. A few years ago when I felt like that I would know I had caught a virus and would take a sick day off.

Now, that is the new normal so I go to work and try to keep my heart rate down by avoiding needless exercise. If I do too much I lie down on my office floor for 25 min to get my HR down. Essential for everyday survival is my CoQ10 (for mitochondria, as per Dr. myhill) 3 times a day and clarithromycin (for inflamation) twice a day. I have also just started taking vitamin B12 and that is also helping a lot. I have tested these medications at least three times individually and find that when I stop taking them I feel much worse. (My scientific training - I don't want to take anything for no scientific reason). I Then feel better when I recommence taking the ' medication'. So, with a bit of thought, I can still lead a happy life with meaningful work and loving family life (and husband who cooks our dinner!). I know that I am incredibly fortunate to be able to live a relatively normal life, albeit with no regular exercise.

I do not see the fatigue I feel normally as 'PEM' because it is so much better than what I do call PEM.

PEM: on rare days I feel heaps better for a very short time. Until recently feeling ok was my signal to exercise as I used to (like go for a jog). It took a long time before I connected this exercise with the overwhelming storm of PEM felt 24-36 hours later.

My PEM consists of enormous pain in my legs and head and total inability to get out of bed. Heart rate very high and low body temperature, chills even in hot weather. The worst illness I have ever felt. I dread getting it again.

I

 

[SOC]

I am curious exactly what it means in the title "How long does your PEM last?"

What exactly defines the end of a PEM crash for everyone?

I feel I am in a constant state of PEM, that varies up and down based on stress and activity. If I wake up feeling like my legs are full of lead, and I am all ready fatigued as if I had the flu or ran a marathon, but I don't start sucking air as if I were 300 pounds overweight from climbing 6 stairs, is that still PEM?

I usually say I am in a PEM crash when I am at my worst. But realistically, my best isn't much different than my worst, I just don't start sucking air with minimal effort. I just feel minimally better...

I believe some patients are in a constant state of PEM. I know I was until I reduced activity enough not to be constantly PEMing myself. For me that meant not going up and down stairs, walking no farther than 50 ft at a time and that at a step-pause pace, showering sitting and going to bed for the rest of the day after a shower, never sitting upright without my feet up, and more. I didn't start getting better until I stopped constantly PEMing myself.

Some of us choose not to pace sufficiently because the lifestyle limitations are more than we will accept. Others can't sit up in bed or walk to the bathroom without PEM, so just being alive PEMs them. For those patients, there probably is no end to PEM.

Now that I manage my activity better AND receive a lot of symptomatic treatment, I am largely (not entirely) asymptomatic as long as I stay within my energy envelope, and don't get infections. If I have to go outside my energy envelope (which is still very limited), then I have a clear increase in all symptoms -- pain, exhaustion, cognitive dysfunction, flu-like symptoms, swollen lymph nodes, and so on. It takes a minimum of 10 days of aggressive rest to get back to my mostly asymptomatic state. I usually count that as the end of that PEM episode, although minor symptoms linger for weeks.

 

[Strawberry]

Wow, thank you both Mel and SOC. That gave me some (bad) insight into myself. I probably AM in a constant state of PEM. And I can't even see how that could change? If I were to suddenly win the lottery and not have to work anymore, I would probably still be overdoing it gardening or something. I just can't stand the thought of not being able to be active anymore. I have had dishes sitting in the sink all week because I don't have enough energy to wash them because I work. And then the weekend when I should be resting up and healing, I am cleaning, working in the garden, forcing myself to do as much as I physically can. Which makes me crash hard, and I have to go to work Monday morning and start it all over.

I keep telling myself it is good for me to stay active (use it or lose it) but it probably isn't..... Maybe going to a CFS doctor will help me from destroying myself.

 

[SOC]

Wow, thank you both Mel and SOC. That gave me some (bad) insight into myself. I probably AM in a constant state of PEM. And I can't even see how that could change? If I were to suddenly win the lottery and not have to work anymore, I would probably still be overdoing it gardening or something. I just can't stand the thought of not being able to be active anymore. I have had dishes sitting in the sink all week because I don't have enough energy to wash them because I work. And then the weekend when I should be resting up and healing, I am cleaning, working in the garden, forcing myself to do as much as I physically can. Which makes me crash hard, and I have to go to work Monday morning and start it all over.

I keep telling myself it is good for me to stay active (use it or lose it) but it probably isn't..... Maybe going to a CFS doctor will help me from destroying myself.

We all have to make our own decisions about how we live our lives. Please understand that I'm not trying to tell you how to live your life here. I do want to warn you, though, that many of us who kept pushing when we were where you are got worse and worse until we had no choice but be bedbound or otherwise extremely limited. With this illness it's not "use it OR lose it", it's "use it AND lose it". If you are still able to work, you might want to consider not overdoing it evenings and weekends or you could find yourself, as many of us have, ultimately unable to work at all. We all WANT to do much more than our bodies allow. The question becomes how to balance today's desires against the long-term consequences. It's a very personal decision.

 

[Mel9]

We all have to make our own decisions about how we live our lives. Please understand that I'm not trying to tell you how to live you life here. I do want to warn you, though, that many of us who kept pushing when we were where you are got worse and worse until we had no choice but be bedbound or otherwise extremely limited. With this illness it's not "use it OR lose it", it's "use it AND lose it". If you are still able to work, you might want to consider not overdoing it evenings and weekends or you could find yourself, as many of us have, ultimately unable to work at all. We all WANT to do much more than our bodies allow. The question becomes how to balance today's desires against the long-term consequences. It's a very personal decision.

Thanks SOC
You have now convinced me that vacuming the floors today is not such a good idea after all
Will rest instead

 

[SOC]

Thanks SOC
You have now convinced me that vacuming the floors today is not such a good idea after all
Will rest instead

 

[MeSci]

I am curious exactly what it means in the title "How long does your PEM last?"

What exactly defines the end of a PEM crash for everyone?

I feel I am in a constant state of PEM, that varies up and down based on stress and activity. If I wake up feeling like my legs are full of lead, and I am all ready fatigued as if I had the flu or ran a marathon, but I don't start sucking air as if I were 300 pounds overweight from climbing 6 stairs, is that still PEM?

I usually say I am in a PEM crash when I am at my worst. But realistically, my best isn't much different than my worst, I just don't start sucking air with minimal effort. I just feel minimally better...

That sounds bad - maybe you are at a low activity level? (That doesn't mean you should increase activity - it means the level of severity of your illness).

I count the end of my PEM to be when I am feeling well again (almost symptom-free unless I try to exert), but I'm at quite a high activity level, thank goodness. I know that some sufferers never feel well.

 

[MeSci]

Some of us choose not to pace sufficiently because the lifestyle limitations are more than we will accept.

And some sadly can't afford to pace because they so desperately need income and can't get benefits, or they have to go out scavenging firewood during freezing weather because they can't afford to have the heating on. The latter is how I ended up with one of my worst crashes.

 

[MeSci]

We all have to make our own decisions about how we live our lives. Please understand that I'm not trying to tell you how to live your life here. I do want to warn you, though, that many of us who kept pushing when we were where you are got worse and worse until we had no choice but be bedbound or otherwise extremely limited. With this illness it's not "use it OR lose it", it's "use it AND lose it". If you are still able to work, you might want to consider not overdoing it evenings and weekends or you could find yourself, as many of us have, ultimately unable to work at all. We all WANT to do much more than our bodies allow. The question becomes how to balance today's desires against the long-term consequences. It's a very personal decision.

There are lots of little things that can add up to quite a lot, that we can change. For example, sitting down whenever our legs feel slightly tired, or whenever we can. Using labour-saving devices, such as dishwashers, walking sticks, shopping trolleys, long-handled 'grabbers', taking lifts/elevators instead of stairs, etc. I think there are threads on tips like these.

 

[MeSci]

We all have to make our own decisions about how we live our lives. Please understand that I'm not trying to tell you how to live your life here. I do want to warn you, though, that many of us who kept pushing when we were where you are got worse and worse until we had no choice but be bedbound or otherwise extremely limited. With this illness it's not "use it OR lose it", it's "use it AND lose it". If you are still able to work, you might want to consider not overdoing it evenings and weekends or you could find yourself, as many of us have, ultimately unable to work at all. We all WANT to do much more than our bodies allow. The question becomes how to balance today's desires against the long-term consequences. It's a very personal decision.

There are lots of little things that can add up to quite a lot, that we can change. For example, sitting down whenever our legs feel slightly tired, or whenever we can. Using labour-saving devices, such as dishwashers, walking sticks, shopping trolleys, long-handled 'grabbers', taking lifts/elevators instead of stairs, etc. I think there are threads on tips like these.