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How long does your PEM last?

Mel9

Senior Member
Messages
995
Location
NSW Australia
Well, this has been very educational for me. :) I'd been assuming that more people have PEM like I do, which lasts a minimum of 10 days and that's with the best self-care I can manage -- basically staying in bed most of the time. But clearly my assumption was far off the mark. It makes me wonder if my daughter doesn't sometimes have PEM for 24hrs and we don't acknowledge it because we're used to thinking of PEM lasting days, weeks, or months, and feeling crappy once in a while is normal for ME.

Still, there must be more people who have long PEM recoveries because I hear a lot of fear about the CPET causing long-term PEM. I PEM pretty severely, it appears, and I've done the 1 day CPET twice without getting a months-long PEM. So where are my severe PEM cohorts? :)

Are a crash, a relapse, and PEM different? For me they seem to be the same thing, although I might use different words in different contexts or depending on the length of the episode.
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The other difference I'm noticing between myself and others is how long it takes the PEM to hit. Obviously, when I was in a continuous state of PEM I felt bad during and immediately after activity, but I felt awful all the time. However, even in the early days my PEM took 4 days (like clockwork) to hit. It took years to figure that out; in fact, other people figured it out before I did. But even though it takes days to hit, it is not subtle. It comes on very hard and very suddenly.

I wonder why I'm different from so many of you. Maybe the fact that my OI is not severe results in less immediate symptoms. Maybe it takes my body longer to rev up inflammation or cytokine reactions. I dunno. Another ME/CFS/SEID mystery. ;)


I agree that continuing activity while in PEM will just extend the PEM episode. If I don't go into major rest mode during PEM, I will stay in a constant state of PEM for months, or even years. That was what I was doing for the first 5-6 years I had the illness, before I understood about either pacing or PEM.

During my worst period, I could do practically nothing -- walk across the room, carry something heavy, fix the simplest meal, make a bed -- without causing PEM. So it was impossible not to be in a constant state of PEM.

That's how I felt all the time until I finally learned that I needed to be recliner- or bed-bound nearly continuously. I hated it, but it did help me minimize the constantly exhausted state -- that and some other symptomatic treatments. It sure sounds to me like you are in a constant state of PEM.

You're right. A very low PEM threshold is extremely debilitating even if the PEM only lasts 24 hours. In my experience, with a PEM threshold that low, it's nearly impossible to avoid being in a constant state of PEM.

My PEM threshold seems much higher, too, since I've been taking high-dose CoQ10. I can still PEM myself, but it takes a lot more. I think I went 8 months before I PEMed myself the latest time.

Interesting. That doesn't work for me at all. I feel fine during the activity, so I have no way of knowing at the time that it's too much. I only know how much I overdid by how bad the crash is afterwards. Wearing a HR monitor to avoid going over my AT helps me judge my appropriate level of activity. If I keep going until I feel symptoms, I'm way, way past my PEM threshold and I'll be bedbound for weeks or months.

The same is true for me. It seems that good treatment can increase PEM threshold and lessen the duration. Now that I'm as "healthy" as I've been in over 10 years, I'm largely asymptomatic, I can go for months without PEM if I pace properly, and my PEM episodes when they do happen are the shortest they've ever been. The problem for me is that when I do develop PEM, I have to go into major rest mode to keep the length of the PEM episode under 2 weeks. For me, that means severely limiting even self-care activities and spending every spare minute in bed. :(


I experience severe PEM 24 hours after mild physical exertion such as shopping for an hour or walking up a hill. 24 to 48 hours bed rest is needed before I recover. Symptoms for this low level PEM are low body temperature (35.4C), aching legs, extreme weakness when walking (looking drunk) headache, and a strange nerve tingling under my forehead, legs and odd places. I made the mistake of doing 40 min on a step machine last year and had much worse PEM - extreme pain in legs so needed hot packs. That PEM lasted around a week or more
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
This! It seems so rude to those who don't know. But when it's time, it's time.:oops:

People won't necessarily understand, even if you have prepared a leaflet explaining the situation and advising them what to do. This is mine:
Dear Guest,

I suffer from the neurological/endocrine/probably autoimmune illness Myalgic Encephalopathy (ME), sometimes known as Chronic Fatigue Syndrome.

During your visit this may manifest itself in two main ways, and it will help me a great deal if you can make allowances for these.

1.Cognitive fatigue ('brain fog'). This can develop very suddenly, and I will be unable to absorb anything other than very simple information, or to explain anything clearly, for a few minutes. It will reduce my discomfort if you can indicate that you understand. Feel free to walk around, read a book, etc., until I have recovered.

2.Physical fatigue. I may need to sit down suddenly, or become weak and unable to continue with an activity for a while. I need to minimise exertion in order to avoid such fatigue, for example by taking frequent rests (sitting down) and walking slowly. The duration of such fatigue varies from day to day and is generally unpredictable.

The illness is also the reason why my house and garden are not as clean or tidy as I would like.

Thank you for your understanding!

The first person I showed it to, both at the beginning of her visit and when brain fog came on, did not do as I asked, but finished her anecdote and then announced that it was time for her to go. So I not only had to try to understand what she was saying, but also try to perform the usual 'guest leaving' protocol, with brain fog.

:bang-head:

I think that ideally a person would just stop talking, put a hand briefly on my shoulder or hand to indicate that they have understood and it's OK, and sit and read or walk around until I can think again, when I will let them know.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
We must come across as very rude.. as there is also the interruption rudeness when you just have to interrupt someone as you know otherwise you are going to forget what you want to say and there is no way one can listen and concentrate on what the other is saying while trying to keep in memory what you want to say.

I used to have exceptional manners person to person but not anymore. (another thing I could add to a list of "things I hate about this illness"

I can relate to this so well!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I experience severe PEM 24 hours after mild physical exertion such as shopping for an hour or walking up a hill. 24 to 48 hours bed rest is needed before I recover. Symptoms for this low level PEM are low body temperature (35.4C), aching legs, extreme weakness when walking (looking drunk) headache, and a strange nerve tingling under my forehead, legs and odd places. I made the mistake of doing 40 min on a step machine last year and had much worse PEM - extreme pain in legs so needed hot packs. That PEM lasted around a week or more

Do you only have low body temperature during PEM? I think mine is almost always low.

Step machine? :eek:
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Do you only have low body temperature during PEM? I think mine is almost always low.

Step machine? :eek:


It is also caused a cross trainer I think
From my gym days
Always have a low temp maybe
I should check more often?
But when PEM arrives I feel 'freezing' even in summer
 

Mij

Messages
2,353
I experience severe PEM 24 hours after mild physical exertion such as shopping for an hour or walking up a hill. 24 to 48 hours bed rest is needed before I recover. Symptoms for this low level PEM are low body temperature (35.4C), aching legs, extreme weakness when walking (looking drunk) headache, and a strange nerve tingling under my forehead, legs and odd places. I made the mistake of doing 40 min on a step machine last year and had much worse PEM - extreme pain in legs so needed hot packs. That PEM lasted around a week or more

I did 40 minutes on a step machine 23yrs ago when I was 2yrs into my illness. I almost called an ambulance the next day. It was not the same PEM symptoms I experience today but I lost function in my legs, hot/aching/burning in my legs. It lasted for 6 months. I was walking like drunk too and this has stayed with me ever since.

MeSci, I hope you never do this again :( I've tested out different types of fitness/exercise and find walking and light weights (2xweek) safe for me. Even at my level now I find resistance type exercise (steps) will bring my baseline back.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I did 40 minutes on a step machine 23yrs ago when I was 2yrs into my illness. I almost called an ambulance the next day. It was not the same PEM symptoms I experience today but I lost function in my legs, hot/aching/burning in my legs. It lasted for 6 months. I was walking like drunk too and this has stayed with me ever since.

MeSci, I hope you never do this again :( I've tested out different types of fitness/exercise and find walking and light weights (2xweek) safe for me. Even at my level now I find resistance type exercise (steps) will bring my baseline back.

It wasn't me - it was @Mel9! The only time I have used a step machine was in 1995, before I knew I had ME. I have not used ANY type of gym equipment since then. I need all my energy for essential activities!
 

Mij

Messages
2,353
It wasn't me - it was. The only time I have used a step machine was in 1995, before I knew I had ME. I have not used ANY type of gym equipment since then. I need all my energy for essential activities!

Yes, those darn 90's and the step climber days. I didn't know better either!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Yes, those darn 90's and the step climber days. I didn't know better either!

To be fair, my context was an Open University summer school student self-experiment session, and I didn't know that anything was really wrong with me, although clearly it was. Doctors could never find anything, of course. I was super-keen to know about my own biochemistry and also act as a 'guinea pig' to support my anti-vivisection campaigning!

I reported my results in an attachment to this blogpost. I would love it if someone could interpret them, but at the time I was told they were really healthy. I can't remember if I had PEM afterwards - I didn't know it existed, and certainly wouldn't have connected any after-effects with the activity. It was many years before I realised that my recurrent 'viruses' etc were due to over-exertion, and I'm not sure whether I had PEM at all in the early years.
 

SOC

Senior Member
Messages
7,849
I experience severe PEM 24 hours after mild physical exertion such as shopping for an hour or walking up a hill.
...
I made the mistake of doing 40 min on a step machine last year and had much worse PEM - extreme pain in legs so needed hot packs. That PEM lasted around a week or more
LOL! Another example of how different we all are! :) I would never call shopping for an hour or walking up a hill mild physical exertion. For me, those things are huge. It's only been the last few months that I could shop not in a wheelchair/cart, and even now an hour would be pushing me. Mild physical exertion to me is walking across a room, taking a shower sitting down, making a simple meal. For years, all those things would give me PEM.

Walking up a hill? Yikes! Walking on a step machine any length of time is more like.... well, a dream. :D
 
Messages
1,082
Location
UK
I used to be in permanent PEM for years, it would take me hours just to wiggle a toe.

Nowadays with supplements and minimal activity i manage to avoid my old paralysis from the neck down type of PEM to a milder bed ridden but can still move my limbs PEM.

I live in solitary confinement apart from a few hours visit a week which is the only time i speak, havent chatted on the phone for 15 years, hardly ever watch tv, i use a wheelchair for rare appointments, never go shopping, i use an electric bed so i can sit up or down in bed at push of a button, i have a small bath lift and the bathroom is 1 meter away from my bed, i can control my lights and my front door with a button next to my bed, so all of this combined makes my PEM a lot milder these days and enables me to have enough energy to make a meal a day.

These days my PEM when i get it lasts only 24 to 48 hours, and takes between 1-2 days to kick in, its more cognitive than physical now.

If i do something major like a hospital appointment in a wheelchair then the PEM will last about a week.

I dont think my improved PEM is down to deliberate, sensible pacing; its more just like ive been beaten into submission over the years by an illness version of an S&M dominatrix :confused:

But its always been around the 2 day delay for me, even an ex who i was with for years never paid enough attention to notice this. He would be texting me either later the same day, or the following day after activity, saying 'i hope you're feeling a bit better now.' and the PEM truck hadn't even kicked in yet. He witnessed the delay hundreds of times but it just never sunk in :bang-head:
 

Mij

Messages
2,353
But its always been around the 2 day delay for me, even an ex who i was with for years never paid enough attention to notice this. He would be texting me either later the same day, or the following day after activity, saying 'i hope you're feeling a bit better now.' and the PEM truck hadn't even kicked in yet. He witnessed the delay hundreds of times but it just never sunk in :bang-head:

How we can continue to do activities and not feel any different until 24-48hrs later is just too bizarre to understand.

I've explained to people so many times and they would continue to say- just rest longer.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
LOL! Another example of how different we all are! :) I would never call shopping for an hour or walking up a hill mild physical exertion. For me, those things are huge. It's only been the last few months that I could shop not in a wheelchair/cart, and even now an hour would be pushing me. Mild physical exertion to me is walking across a room, taking a shower sitting down, making a simple meal. For years, all those things would give me PEM.

Walking up a hill? Yikes! Walking on a step machine any length of time is more like.... well, a dream. :D

We are indeed different. I'm not able to work full-time - unless it is extremely flexible - hence my need to set my own hours (self-employment) and work from home. Even the tiny amount of accounts I have to do takes weeks, as my brain keeps packing up.

But I can walk up a long, steep hill into town at least once a week (stopping several times on the way), and do gardening, including cutting down shrubs and even a small tree. I can do a bit of DIY. I can even walk up and down a long cliff path on a good day, although I am pretty wiped out afterwards. After walking up the hill I can go on a bus ride, then sometimes manage a 2-3-hour walk with a heavy tripod on my back before coming home.

On a bad day I can't walk much at all, but am very rarely bedbound.

I wouldn't want to dream about using a step machine. I would much rather dream about going for long walks or cycle rides in the countryside!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
How we can continue to do activities and not feel any different until 24-48hrs later is just too bizarre to understand.

I've explained to people so many times and they would continue to say- just rest longer.

I suspect that it may be the time taken by the liver to process the excess lactate, and then the time taken by the kidneys to excrete it along with minerals, and that it may be the mineral loss that is largely responsible for PEM - at least in my case. Lactate can be excreted along with H+ ions, ammonium ions, sodium ions or potassium ions, depending on various factors, as described in this paper on d-lactic acidosis.

The theory would be easy to test by measuring blood and urine mineral levels before and for a few days after activity. Has anyone done this?
 

GracieJ

Senior Member
Messages
772
Location
Utah
I have been following this thread, and I really do not know what to say.

PEM is still definitely a part of my life. There seems to be a paradox happening, where I go slow and easy to pace activity - in my case, working - get through a day or two, drag through the rest of the week, then sleep for two days. There is no way to separate the pieces right now. I gauge things by whether or not I am recovering enough in the evenings to do the next shift, and if I feel recovered enough to start another week.

A lot of the time, I do not feel caught up at all. It is a scary feeling. It also happens more if there are other things going on, like the allergies that keep coming up. Since I miss almost no work days, the deficit especially feels scary. When I do get a day, it is never enough to fill in the needed energy. I would need months now.

When I was not working and could just stay home and rest, I appeared pretty normal and healthy. It was doubly hard to explain to others that adding more was not a good idea. I was comfortably living within the envelope. My mistake was forgetting about that part, trying to add a new relationship or activity and then not keeping up.

Permanent Exertional Malaise - that fits.
 

GracieJ

Senior Member
Messages
772
Location
Utah
I explained on another thread my success at very, very slowly building up to a two-mile walk daily. When something interrupts, I take the time off, then when I feel better, I work into it again. I averaged a cycle like that about every six months to a year. It has now been two years since I walked my two miles. Just no gas in the tank to take it on.

With some significant changes last week improving my energy, coupled with beautiful spring weather, I went for a walk yesterday, probably a half mile very slowly. It felt so good, I wanted to keep right on going - but made myself stop. I will be very happy if I can work into my two miles a day again.

I also bought an elliptical about two years ago, and could not use it. Steady, slow walking is okay, but the up-and-down elliptical sent my heart rate up too far too fast.
 

Mij

Messages
2,353
I suspect that it may be the time taken by the liver to process the excess lactate, and then the time taken by the kidneys to excrete it along with minerals, and that it may be the mineral loss that is largely responsible for PEM - at least in my case. Lactate can be excreted along with H+ ions, ammonium ions, sodium ions or potassium ions, depending on various factors, as described in this paper on d-lactic acidosis.

The theory would be easy to test by measuring blood and urine mineral levels before and for a few days after activity. Has anyone done this?

Interesting theory. Do you experience any type of OI type symptoms with PEM? I feel that this may be my most distressing symptoms. In the past I had to do short errands with PEM and I would have to be careful not to run into people because I was so unstable with my balance.
 
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Mij

Messages
2,353
I explained on another thread my success at very, very slowly building up to a two-mile walk daily. When something interrupts, I take the time off, then when I feel better, I work into it again. I averaged a cycle like that about every six months to a year. It has now been two years since I walked my two miles. Just no gas in the tank to take it on.

With some significant changes last week improving my energy, coupled with beautiful spring weather, I went for a walk yesterday, probably a half mile very slowly. It felt so good, I wanted to keep right on going - but made myself stop. I will be very happy if I can work into my two miles a day again.

I also bought an elliptical about two years ago, and could not use it. Steady, slow walking is okay, but the up-and-down elliptical sent my heart rate up too far too fast.

Bravo! Very good discipline! :thumbsup: Intellectually we understand this, we just have to ignore that voice . . . you know that one that tells us we can keep going . . . :D