How long does your PEM last?

[SOC]

It has recently come to my attention that some patients report PEM lasting less than 24 hrs. This surprised me, perhaps because my experience with people with ME/CFS/SEID has shown much longer recovery periods. However, all the people I know personally have moderate/severe ME/CFS/SEID, so my perception may be skewed. I think of PEM as extremely debilitating. A day or two of PEM, while abnormal, doesn't seem as life-destroying as the condition is, in general.

It seems to me if I had PEM that lasted only one day, I'd be able to do much, much more than I do now. Yeah, I'd have to take a day of rest, even in bed, but it would be worth it to be able to go for a walk in the woods once in a while, for example. I wouldn't think twice about doing a 2-day CPET if the resulting PEM only lasted a day or two. I know many patients are very concerned about PEM from a 2-day CPET crashing them for long periods, or even permanently, so surely I'm not alone in having a long recovery period from PEM.

So now I'm curious -- how long does your PEM last typically?

I'll go first. My PEM takes 4-5 days to hit, but it hits like a truck. I feel fine, and then a few hours later I'm like death warmed over. I get extreme exhaustion (not a little fatigue), muscle pain and stiffness, muscle weakness, significant increase in cognitive dysfunction, sore throat, swollen glands. Often I have other symptoms as well, but that varies. Previously, these symptoms would continue for 3-6 weeks, often for months, even with bedrest.

Now that I'm as functional as I've ever been with this illness (thanks to many symptomatic treatments), my PEM threshold is higher. My most recent PEM episode was the mildest I've ever had, lasting only 10 days. I was able to work about half my normal work schedule, but spent all my remaining time in bed recovering. I thought that was pretty good for PEM.

 

[TigerLilea]

My PEM lasts anywhere from a day to a week depending on how much I pushed myself. I've never been bed bound while going through PEM.

 

[halcyon]

For me, PEM hits immediately once I cross that invisible threshold. Before treatment, it would last weeks. With treatment, the threshold seems higher and it lasts days.

 

[L'engle]

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.

 

[alex3619]

For me PEM can be before I even finish doing stuff, delayed by a few hours or days, and can last from hours to weeks. Many weeks. I was in continuous PEM in the late 90s due to doing just the things necessary to survive. My once per two weeks grocery trip crashed me and I never recovered before the next trip. So it was more an up and down rollercoaster, never quite going away.

The more I pushed the longer it takes to recover. In the case of post exertional pain, try 15 years before I started to see real improvement. Not days, weeks, or months, years. Mind you this happened as I started to pace myself more rigorously, so I might have improved much sooner had I been pacing all along. I was more in a push-crash cycle, and those are not good.

 

[rosie26]

I am the same as @alex3619, it can start for me while I am still doing something, my first symptoms are a very sore head with heat, sinuses get achy, can't think properly or speak coherently (struggle to find the right words) and POTS increases, unsteadiness, weakness, exhaustion and more (there is always more). It can last days to a month or longer.

It's all unpredictable for me, there are some things that cause worse PEM than others. I learnt that I couldn't get away with just a few digs in the garden, carrying something very heavy home would give me very serious, hit by a truck PEM - lasting a month to six weeks.

 

[daisybell]

I find this a hard question to answer! I am not sure that I am not in some sort of PEM state most if not all of the time. A small amount of exertion worsens that, for anywhere from a few hours to a few days, but I feel unwell all the time. It's rare that I don't feel exhausted....

 

[Hanna]

It depends : at the beginning of the illness, it was a big-looooong PEM of one year. Now (16 years later), most of them are between 2 days to one week, but my latest one was far longer about 6 weeks.

 

[taniaaust1]

Hard for me to answer too currently as the POTS caused by the ME overrides everything else in my case and the severe POTS and other ME dysautonomias (I have all 5 Dr David Bell mentions in us), will have me having to be ambulanced to hospital before I can cause ME PEM much of the time.

It's hard to cause bad PEM when you are in a wheelchair any time you go out and aren't able to do things like do dishes, cook meals or hardly anything else standing or on my feet due to POTS. I'm so limited over how much I can do due to the POTS.

If I do manage to ME PEM.. it means I crash twice.. once immediately with the POTS and then crash a bit the 24-36hrs later with the ME (not in my case usually much fatigue but rather like a viral flare up.. sore throat, headache, earache, nausea, feeling weak and pale, my hands start turning in and can get a spastic look to them etc

Last week my feet were doing it when I was in a wheelchair out shopping, a stranger came up and commented on my twisting feet asking me what was wrong with my feet which made them twist up. I was shocked as I didn't realise feet were going that bad. Unfortunately I'm getting worst. (it makes me think of how a spider goes when you spray it with fly spray. It like I get a neurological attack happening if I start to over do it).

My symptoms become very noticeable very quickly (sometimes if I'm with one of my support workers they may notice it before I do eg my eyes will start rapidly blinking (my GP pointed that one out to me one time I started crashing when seeing her. another time someone said my eyes started shaking) or they will observe I'm shaking in other body areas but I'm yet to notice that I'm doing it etc

If I notice I'm over doing it via my symptoms or another points it out to me, It will cause me to stop right away whatever I'm doing and head straight to bed and that seems to be able to ward off a ME crash (if I cant go straight to bed I usually end up in hospital within the next few days). My ME crashes currently look like an immune issue viral thing/neurological flare.

Also a severe POTS crash with a hospital trip.. can produce PEM for me the next day (hospitals are bad for ME patients cause you cant get the sleep you need etc etc so the whole thing knocks my ME around thou I feel very great with the POTS after the drips.. so I go from feeling great due to fixing POTS crash to next day ME issues from it all).

Those ME crashes from a POTS crash are usually for 24 hrs though occasionally longer eg a few days. (that may not sound bad but keep in mind that my activity levels to cause that are extremely low, not doing much more then a bedbound person).

I guess if I allowed myself to crash more with the POTS so ending up in hospital more (no thank you!!) it would be a case that my ME would get worst if it was taking that hit with having to deal with hospital stays and being stuck in emergency all the time. (The POTS puts me into hospital as often at times as once a fortnight as I try to be soo very careful with it so avoiding ending up in hospital all the time. The saline drips wear off in the second day after).

Anyway, I crash very hard and fast but its rather from the dysautonomia of the ME and the dysautonomia is fixable with a drip for a day or near two (thou I use my normal ME pacing on those days.. its just gives me a day or so where I feel far better then I normally do as long as I'm pacing right).

Before bad POTS messing up my whole ME picture, my ME was fairly typical with delayed crashes which could last put me in bed for a very long time to recover from exertion (up to months or if crashed very bad.. years to recover from - my worst crash took 5 years).

The worst I'd exerted or rather the longer length of time I pushed through exertion (each day getting harder), usually the worst the crash would end up .. often causing a whole baseline decline if I really really over did stuff on subsessive occasions (sorry got word loss so guessing words I hope that "s" word is kind of right).

I currently function on a 2 days doing things (not much) and then a full rest day kind of schedule to not start ME declining from activity build up day by day (my ME with my current pacing will start to kick my butt if I don't do fairly complete resting on the third day). I wash once a week and do my hair about once a month and get dressed only on the days I have helpers here (my activity level is very low even thou I don't have many ME crashes and mainly severe POTS crashes)

 

[taniaaust1]

A day or two of PEM, while abnormal, doesn't seem as life-destroying as the condition is, in general.

It seems to me if I had PEM that lasted only one day, I'd be able to do much, much more than I do now.

It all depends.. maybe the person who got the one day PEM only made a bed to get that and didn't do anything else.

When consider a persons severity.. better to go by how much they are able to do before they get that PEM. They may be cutting down their activities to a point in which the PEM last only a day or two but doing near nothing in their lives at all to be at that level of PEM. Anyway.. wanted to point out that maybe doing something like just making a bed then have put them into bed for 24hrs!! even if they recovered back to their baseline after that. (they could be in that situation all the time.. only able to make one bed per day before another 24hr crash).

One thing I've learnt is my ME flares can hit me very hand and very fast but for short periods as its shifted from what it used to be. For many of us (I know its not just me), the more we do, the longer the PEM can last... a small activity may send a person to bed only for 24hrs. The person may in fact not be capable of going for walks in the woods.

I could use my case for an example.. there is no way I can go for a walk in the woods. Australia day last year, I couldn't even walk to the 50-100m sea when my family took me once to the beach for Australia day. (my ME crashes are short when they manage to happen but I need to use a wheelchair).

The only bonus of having short crashes would be the 2 day testing thing but I'd be worried my POTS could cause me to have tostop the test before my ME has a chance to get the exercise to flare it. (I'm sure thou my ME would show up quite well on a third day as I cant do low amount of activities for 3 days straight without flaring ME some hence why I completely rest from any on feet activities and avoid that every third day otherwise I will get ME ill on that third day.. the slightest tiniest thing can cause it that day).

.......

If you saw how much in a day I do, to keep the level I'm at to stop getting worst, I doubt you'd want to trade shoes so you can have my shorter crashes. If you asked me what I've done today on my feet, I'd say nothing at all except go to loo and get myself drinks (I'm in my clothes I slept last night in, haven't cooked, brushed teeth, done hair or done anything except sat today and its night now).

I cant do anything on Sundays as otherwise I will not get through Monday and Tuesday safely when people come to help (and then wouldn't be able to be taken out in the wheelchair to go shopping on Tuesday).

I cant do anything on Wednesdays, Saturdays or Sundays as I cant do more then 2 days of very low physical on feet activities in a row which is basically get dressed, do my hair, do a shopping list and do a couple of very minor things while a support worker is here.

 

[cigana]

Like every other question on a MECFS diagnosis sheet the answer is always "it depends"....

I really wish researchers would let us patients design the diagnosis questions, I find faults in every one, usually because the questions are asked from the perspective of someone who is healthy.

 

[Mij]

Definitely depends on the amount of activity for me too. Minimally though, it stays for at least 16-24hrs minimum. It's never been less than that amount of time even with the minimal.
.

I have not experienced PEM for over 7 months now because I stay within my limits. I have gone over several times but no PEM. First time in years. I attribute it to COQ10.

 

[eafw]

Nowadays its more a case of (quite severe) Permanently Existing Malaise so very hard to judge the daily ups and downs.

Previously, when slightly more functional, a mild level of exertion would give me an obvious flare of symptoms the next day and day after that, which would then settle by couple days later. Overdoing it a bit more would last a week or so, infections or bigger stresses several weeks, major relapse could be months, and further relapses on top of that is what can end up pushing it into years.

ETA 1: recovery time probably correlates quite well with severity, one of the things that a good way to subgroup would help with in terms of treatment and management too.

ETA 2: during the milder phases my PEM was always worse 2nd day after, and the key was to be very careful 1st day after (before it had hit fully) to avoid prolonging things.

 

[Mij]

It seems to me if I had PEM that lasted only one day, I'd be able to do much, much more than I do now. Yeah, I'd have to take a day of rest, even in bed, but it would be worth it to be able to go for a walk in the woods once in a while, for example. I wouldn't think twice about doing a 2-day CPET if the resulting PEM only lasted a day or two. I know many patients are very concerned about PEM from a 2-day CPET crashing them for long periods, or even permanently, so surely I'm not alone in having a long recovery period from PEM.

I would be able to do a 2 day CPET test with no worsening of my condition. I would not be worried about it. Well rested before the test I'm pretty certain I would recover in 24hrs or maybe even not hit PEM with that amount, but I'd have to look up exactly how much I would be doing.

But, I could not continue to hit PEM , recover after 24hrs, hit PEM again, recover and do this on a continues or repetitive basis. This is where my immune system would kick in and I'm pretty sure this is the point where I would start to decline again. This was my experience many yrs ago. I'm not willing to try to find out either.

 

[SDSue]

Tough question.

The early years: I was in a state of continual PEM, just didn't know it. PEM'd myself to bed bound which took almost a year to overcome and make it to house bound status.

Now: I manage it better. When my brain begins buzzing and cognition worsens, I know it's time to stop what I'm doing. If I stop immediately, the PEM lasts about 24 - 48 hours. On those occasions where I can't stop the activity, The PEM starts immediately and progresses to it's worst in 3-4 days. The climb back to baseline depends on how long I continued activity beyond my threshold.

This describes it well:

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.

My PEM includes "coat hanger" pain of my neck and base of skull, severe brain fog, headaches, feverish feeling, worsening of insomnia, and emotional lability.

 

[Mij]

Being in a continuous state of PEM from what I'm reading from others has never been my experience.

When I was very disabled (even on the days when I felt better) yrs ago, the symptoms that I had were not what I would describe today as PEM when I overdid it.

The PEM I experience now is distinctively different.. Maybe it evolved over time. dunno.

 

[Butydoc]

Hi Soc,

When my disease started 11 years ago, my PEM would start about 24 hours after exercise and last anywhere from a few days to weeks. As my condition improved with treatment, my PEM threshold raised and the duration was lessened. My impression is that my level of health linearly correlates with my PEM and Its duration. It is rare for me now to have PEM that last more than 24 hours. I also think that I'm better at not pushing myself when I develop PEM and generally shut it down until I get to baseline.

Best,
Gary

 

[PNR2008]

I get it the next day, then the second day is worse. I become bedbound and am usually in great pain. My legs and back are the worst and I can do little except rest.

Things have gotten worse with age and disease progression, doing very little physical or mental can cause PEM. This is a horrible disease and I am so tired of the rollercoaster ride.

 

[melamine]

This largely represents me:

Now: I manage it better. When my brain begins buzzing and cognition worsens, I know it's time to stop what I'm doing. If I stop immediately, the PEM lasts about 24 - 48 hours. On those occasions where I can't stop the activity, The PEM starts immediately and progresses to it's worst in 3-4 days. The climb back to baseline depends on how long I continued activity beyond my threshold.

Symptoms that predictably worsen with effort, stress, and activity levels for me are cognitive and those of muscular/mitochondrial exhaustion.

 

[Sidereal]

Tough question, SOC.

These days PEM starts 24 hours (almost like clockwork) after exertion and continues for 3-4 days after that. I'm currently mostly housebound.

A year or two ago when I was bedridden I was in permanent severe PEM. Just going to the bathroom, eating meals etc. was too much exertion.

In the past when I was still working and trying to ignore false illness beliefs and placebo my way to health I was in continuous but mild PEM because I didn't understand what the illness was or what I was doing to myself by continuing to exert.