How long does your PEM last?

[MeSci]

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

I know it's hard. We all do. I hate looking at dirty windows and floors, and I am itching to clean them - and I am by no means a seriously clean/tidy type! It's a constant internal battle. But it's better having a visible mess than a damaging one!

 

[Mij]

Just thinking . . .

when I became ill (first 6yrs) I felt like what some here are describing as, "in a constant state of PEM". There were days during those 6yrs when I felt pretty good(spontaneous) and went out a little more, cooked more, socialized etc but with no repercussions (no PEM). . Then(spontaneously) I went back to my very sick disabled state. I was always able to do complex calculations, talk non stop and never had cognitive issuees at all. How is that? Is it possible that what some here who are very ill, are very ill and disabled and not feeling PEM as we describe as distinctive PEM?


I've been in both situations and it's a very different set of symptoms and experience.

How is when I started feeling around 80% - 90% improvement that PEM started only after exercise, including mental exertion? Is PEM brought on by aerobic exercise and over doing A LOT and the development of OI or other autonomic disorders over the years? Do symptoms from PEM vary from person to person?

 

[melamine]

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

This very much describes mine, but I have also been dealing with a series of major, medical-related, unavoidable PEM-inducers, which have stretched it to many months.

An incident that happened yesterday, however, was near totally avoidable except that being in the middle of PEM, my exhausted and scrambled brain failed to appreciate what I needed to do, and because of that, I allowed myself to be sucked into a long, tiresome and exhausting conversation with an insurance case manager that was more stressful than (ostensibly) useful.

In a better and more rested frame of mind, it wouldn't have happened and her first impression of me would not have been that I'm a moron who needs some kind of psychiatric med. and doesn't deserve assistance with any referrals. She didn't need to say it directly.

This is an example of the many kinds of unintended consequences of PEM - In this case, she ended up being the recipient of some of my exhaustion (no one deserves that) by way of the mental effects of my sentence to sentence functional memory loss, inability to assess and organize information, inability to make hierarchical and other decisions, inability to express my needs in a reasonable manner, apparent unreasonableness, etc. On top of which I was at a loss for simple words throughout the conversation, words like "case manager."

 

[MeSci]

This very much describes mine, but I have also been dealing with a series of major, medical-related, unavoidable PEM-inducers, which have stretched it to many months.

An incident that happened yesterday, however, was near totally avoidable except that being in the middle of PEM, my exhausted and scrambled brain failed to appreciate what I needed to do, and because of that, I allowed myself to be sucked into a long, tiresome and exhausting conversation with an insurance case manager that was more stressful than (ostensibly) useful.

In a better and more rested frame of mind, it wouldn't have happened and her first impression of me would not have been that I'm a moron who needs some kind of psychiatric med. and doesn't deserve assistance with any referrals. She didn't need to say it directly.

This is an example of the many kinds of unintended consequences of PEM - In this case, she ended up being the recipient of some of my exhaustion (no one deserves that) by way of the mental effects of my sentence to sentence functional memory loss, inability to assess and organize information, inability to make hierarchical and other decisions, inability to express my needs in a reasonable manner, apparent unreasonableness, etc. On top of which I was at a loss for simple words throughout the conversation, thin like "case manager."

I sympathise. I find it so embarrassing and humiliating when I know I am coming across as stupid to someone I know is a lot less educated and intelligent than I am! I stress repeatedly to organisations that they should email me and not phone me, but I still get unwelcome calls. First it is jarring and exhausting to get to the phone, then I have to deal with the call, then I am often dazed afterwards and can't remember what I was doing before, and am distressed over my failure to be coherent and articulate, having forgotten to say what I needed to say, so often end up having to email them in a rush so make a hash of that too!

 

[Sidney]

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.

My experience is identical.
Do not go back as soon as it's bearable!! But in real life this is not always possible.
And doing something once is a guarantee that I cannot do it the next day, or next week, depending on what it was.
Yet I have only been with this condition since late 2014, although it crept up for a few months, during which I was recovering from Polymyalgia. (There must be a connection; though no doubt as obscure as everything about these diseases is.)

 

[MeSci]

My experience is identical.
Do not go back as soon as it's bearable!! But in real life this is not always possible.
And doing something once is a guarantee that I cannot do it the next day, or next week, depending on what it was.
Yet I have only been with this condition since late 2014, although it crept up for a few months, during which I was recovering from Polymyalgia. (There must be a connection; though no doubt as obscure as everything about these diseases is.)

If you've been ill for such a short time it is perhaps especially crucial that you rest as much as possible, as it is apparently in the first 3 years that recovery is most likely - but only if people do the right things, especially rest.

 

[Sidney]

If you've been ill for such a short time it is perhaps especially crucial that you rest as much as possible, as it is apparently in the first 3 years that recovery is most likely - but only if people do the right things, especially rest.

Thank you so much! I had not ever been told ...

 

[MeSci]

Thank you so much! I had not ever been told ...

You're very welcome! If I can stop just one other person from making the mistakes I made, as did many of us, my life will not have been in vain! So many of us have regretted those mistakes bitterly for a long time now, but of course the instinctive thing to do when you are feeling weak and lacking energy is to 'try to get fit'. I even wrote in my 1995 health diary that I was trying to do this, and I continued, bewildered when my legs gave way, and wondering what on earth was going on when I had to lie on the floor while cleaning out the fire grate.

When your family, friends, doctors, the government and the media are all encouraging you to exercise to 'get fit', any small voice coming from your body is drowned out. But that's the one you need to listen to.

The more you ignore your body's warnings, the worse you are likely to get, and the smaller your chances of recovery. You may even end up in hospital, as I did. I was not far from dying.

 

[DaiWelsh]

My 2p would start with supporting the view that it is hard to separate the different "reactons" I get.

If I push way past my limit (especially but not solely via physical activities) then I can get some immediate symptoms but I think of that as more "normal" (albeit more extreme than I ever experienced pre-illness) in that my body is responding to over-exertion in the short term..

However I very rarely do that as I know that there is an earlier "invisible" (insensible?) threshold which if I cross will give me what I think of more as PEM, which for me will start 1-2 days after and last perhaps 1-2 days (has been more in the past but I try to learn the threshold better as I go along). Learning where that threshold is has become an rart form, though I am no picasso.

What I find harder to predict/control is the longer term cycles of energy. I have not been able to reliably determine why these happen but I can have weeks or months when every day seems to be a struggle and I feel like I am getting slightly worse each week even though I am controlling my output the same as at other times. Oddly I seem to come out of these slumps with no apparent trigger as well and can then sometimes have a few months when I can manage comfortably (within the same self-imposed constraints that is) and feel like I could consider a slight increase in my daily activity.

For the record I would say I am a mild-moderate case, I manage to hold down a job working 3-4 hours a day, 5 days a week from home (computer work). There are days when I get pretty much nothing done, but I am fortunate that I can usually cover this with a decent day before or after (I choose when to deploy code changes and update tickets to tell the customer what I have done), I use modafinil at 9am every work day to aid concentration. I was able to work before starting it but have found it a massive boost to brainpower and particularly consistency of getting 3-4 hours most days.

Once I am done with my work day/morning I generally relax the rest of the day, usually with some undemanding game on my laptop. Interestingly one of the things that I feel I *have* linked to PEM/slumps is playing the wrong sort of games. I do not play any shooters or other high-adrenalin games anyway as a rule, but have found that a few games I like hat have just a little more time dependency/pressure can be enough to push me into PEM. I do not know if it is the adrenaline/stress or the physical muscle tension that some of them induce but I have learned to steer clear and stick to games where I can just relax and enjoy the ride.

 

[Blasted]

My PEM hits about 48-72 hours post-exertion and lasts from 2-7 days. The duration, degree of pain and sickness behavior I experience correlate with how active I was.

After an active day it's so hard to slow down the next day (in order to avoid the flare up or reduce its severity) since I still feel great. The delayed nature of the flare's onset makes it an invisible enemy. As a result I find I often fool myself into believing that the enemy isn't there this time, but it is there, it's just lurking in the shadows.

 

[Dr.Patient]

Looks like the closer the onset of PEM to the activity, the more severe the illness is.

 

[SOC]

Looks like the closer the onset of PEM to the activity, the more severe the illness is.

I wouldn't say so. My PEM always took several days to manifest, even when I was bedbound. I would have immediate exercise intolerance symptoms that could be relieved by rest, but actual PEM was delayed.

Since some (many, most?) PWME also have exercise intolerance and OI, it may be difficult for some of us to distinguish the exact onset of PEM. If I recover within one day, then by my assessment rest relieved the symptoms and they weren't PEM, they were exercise intolerance or OI-related. One day to recover is not "delayed recovery" in my opinion. If I don't have flu-like symptoms, then I don't consider it PEM. Exercise intolerance and OI can make me feel tired, achy, and foggy immediately afterwards. My PEM feels like being hit by a truck and having the worst-ever flu. It lasts for days or weeks and doesn't get better after a night's rest.

 

[MeSci]

Looks like the closer the onset of PEM to the activity, the more severe the illness is.

I think it varies between different people and also over time in the same people. For myself, the pattern is as you suggest - PEM comes sooner when I am generally worse, and the PEM is worse too. Then it may come in 24-36 hours. When my illness is very mild, ditto the PEM, the PEM can take possibly a week to kick in, and can be so mild that I'm not sure if I am getting it at all.

But I have read of other people having the opposite correlation between delay and severity of PEM.

 

[Aerose91]

I am different from anyone else here in that this disease is centered in my brain, but PEM hits 4-5 days after and now, 2 years later I haven't recovered at all.

I lose more sense of time, placement in the world and where I am. Psychosis, loss of ability to know who people are (forget who my parents and friends are) an unending feeling of nothingness in my brain and major dissociation. I also have lost my ability to connect with my life prior to this illness and that gets increasingly bad with my past overexertion episodes. I've also lost many long term memories.
I haven't over exerted in a long time because of the severity and (so far) permenant effects it has on my brain so I have to be really careful.