How long does your PEM last?

[Mij]

@melamine yes it has happened, but It does not happen every time. There were incidences when I was not expecting PEM because I had done less than what would normally bring PEM on, but within a few hours it would start. Caught me by surprise. Definitely the distinctive symptoms of PEM, so I knew I wasn't just feeling viral symptoms.

I also think it's a mito problem.

 

[SOC]

Did taking CoQ10 reduce the PEM once it started?

Since increasing my dose to 200mg/day I have not had PEM because I've been very careful not to go over. I'm curious to know if I took CoQ10 during a PEM episode whether it would reduce or shorten the length of time?? In the past, once PEM starts I couldn't do anything about it. Nothing helped or reduced it, not even a nice long restful sleep. I had to let it take it's course. Only time would relieve it.

I couldn't really say if the CoQ10 reduced the PEM. I was just speculating that the higher dose might help, so it was worth trying. My PEM was shorter than usual this time (only 10 days), but there could have been any number of reasons for that.

 

[SOC]

My own feeling is that PEM is primarily a mitochondrial problem with other effects downstream.

I'm coming to think the same thing myself. Hopefully we'll get some decent research on PEM and/or mitochondrial issues in ME/CFS/SEID before too many more years have passed.

 

[Mij]

I couldn't really say if the CoQ10 reduced the PEM. I was just speculating that the higher dose might help, so it was worth trying. My PEM was shorter than usual this time (only 10 days), but there could have been any number of reasons for that.

I'm pretty sure because my PEM pattern hadn't changed in 15yrs until I started 200mg/day of CoQ10. It was quite surprising, I had gone over my normal 1 hour power walk because my watch battery died and I ended up doing 1 hour and 20+ minutes. I was so upset at myself, but the next day-nothing- as a matter of fact i ddin't even feel as though I had exercised the day before.

It happened again last month, I went out walking and my watch battery froze/stopped working with the cold (-28 C). I was out for almost 2hrs!! Next day-no PEM- I only had fatigue in my muscles and had to take it easy for rest of the day.

I need to get a more reliable watch or I may never come back home lol

 

[SOC]

I'm pretty sure because my PEM pattern hadn't changed in 15yrs until I started 200mg/day of CoQ10. It was quite surprising, I had gone over my normal 1 hour power walk because my watch battery died and I ended up doing 1 hour and 20+ minutes. I was so upset at myself, but the next day-nothing- as a matter of fact i ddin't even feel as though I had exercised the day before.

It happened again last month, I went out walking and my watch battery froze/stopped working with the cold (-28 C). I was out for almost 2hrs!! Next day-no PEM- I only had fatigue in my muscles and had to take it easy for rest of the day.

I need to get a more reliable watch or I may never come back home lol

Holy cow, a 1 hour power walk? That's terrific! Then a 2-hr walk with no PEM! Congratulations on being able to do that! I'm still very far from doing much that needs aerobic capacity, although I can now grocery shop for a reasonable amount of time if I don't otherwise overdo before and after.

Please get yourself a new watch. We don't want to lose you!

 

[MeSci]

I took 200mg daily for a couple of years (on the recommendation of my specialist) to no clear effect. I decided that before I dropped it entirely, I'd try the high doses used for inherited mitochondrial disorders. That's when I noticed a big difference.

For us, 1200 mg daily has been most effective, although we haven't tried a higher dose. I drop down to 600 mg daily when I'm feeling my best just because the cost of 1200mg daily is so high it makes me cringe. I went back up to 1200 mg daily when I had my latest PEM episode in the hope that it would reduce the length and allow me to keep working at least a few hours that week. I'm not planning to drop back to 600 mg until am well past this latest PEM.

Just shows how different people are. I can't tolerate Co-Q10, at least at the dose I tried (100 mg/day). It gave me dizziness, hunger and near-faecal incontinence, among other things.

I am absolutely fine with about 8-10 g/day glutamine divided into 2 doses.

I am also fine with 100 mg/day 5-HTP, which helped to lift my persistent low mood after a sad event.

I understand that gut dysbiosis (and nutrient deficiency that may arise from this) can make it difficult or impossible to convert tryptophan correctly, so that it gets converted to kynurenine instead of 5-HTP. Taking 5-HTP directly can circumvent this problem.

But like others, I have had almost-zero luck in increasing energy levels.

 

[MeSci]

That's kind of working the theory backwards and sideways?...assuming your assessment of a compromised immune system is correct, and so expecting there would be elevated cytokines, it would seem to suggest an association between them and PEM.

My own feeling is that PEM is primarily a mitochondrial problem with other effects downstream.

Yes, that's my current theory (I've had a few!). I think it's due to the inability of mitochondria to perform oxidative phosphorylation for long, leading to lactate accumulation and the consequences of that. I have summarised it in my blogpost here.

 

[melamine]

I've actually thought mitochondrial failure to be a major issue since discovering it in the mid-2000s, but came to realize that researchers were only interested in the primary genetic disorders and not the later-onset kind at all. In 2009 CoQ10 and carnitine were recommended to me. I experimented with different kinds of CoQ10 off and on after that but never found it helped with PEM or anything else, so turned my sights back to mercury and other detox, diet, etc.

 

[Mij]

@melamine how much CoQ10 did you take? For how long? I'm not 100% certain it was CoQ10, it could be that I've improved and it's just a coincidence. That being said, if mitochondrial failure is an issue (which I also think it is), then wouldn't it be a good supplement to continue? Also as a preventive measure?

Just because you don't feel any different doesn't mean it's not of any benefit to you. I know it's an expense, but this is one supplement that has a lot of studies to back it up.

 

[melamine]

@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.

 

[SOC]

Just shows how different people are. I can't tolerate Co-Q10, at least at the dose I tried (100 mg/day).

Yes, it's very clear that what works for some of us doesn't work for others. Unfortunately, we don't have anywhere near enough research to even guess who is going to respond to what.

CoQ10 appears to be a supplement with a clear good/bad pattern. Some patients get a big benefit from it and others have a bad response to it. My best guess at this point is that it may be as simple as: if you need it, you respond well; if you don't need it, taking it creates a "too much" situation that your body objects to.

It will be interesting to see, once we've identified subsets (or indeed, entirely different illnesses) under the ME/CFS/SEID umbrella whether those subsets correspond to our responses to different meds and supplements.

 

[Sidereal]

I'm definitely in the "bad" camp with regard to CoQ10 supplementation but I do agree PEM is likely mediated by mitochondrial stress.

 

[taniaaust1]

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.

Same here Mij. I'd do a day of rest before it to make sure I was okay doing it and "possibly" get through a 2 day one OK as far as ME crash goes (though knows, maybe my result would be far worst then I think due to what they measure). I know I certainly wouldn't get through 3 days without paying the price. Have you worked out exactly how many days in a row you are okay with doing things before it hits? Do you do what I do and have set rest days in your weekly routine so you can go through the week okay ME/CFS was as long as you stick to daily limits and don't over do on a day.

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

same here.. and that in the past is what ended up making me bedbound for 9mths.. my crashes are like messing with Russian roulette. I did the PEM and recovery thing.. push and short crash thing too much (though some of those were 2 week crashs) and then suddenly big time crashed where I couldn't walk to a loo for a very long time (9 months bedridden and years of being mostly bedridden after it). I went from about 30-40% down to like 0 on the function scale.. couldn't even eat with a fork.

Though my ME crashes now days are very small.. I need to really make sure they don't happen often (any more then a very small crash once a fortnight puts me at risk).. regular crashes, they put me at huge risk of possibly ended up full time bedbound again for a very long time. And with each crash, its a risk I wont get my already very poor baseline back. I know I cant count that I will.

 

[taniaaust1]

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.

Here's a thought.

Maybe how bad people get their PEM as long as they are able to stop their activity, depends on how early they get their early warning signs. Seems like your warning sign isn't happening early enough. My body warns me and gets a sore throat as a very early warning sign of impending ME crash if I continue. If I stop my activity at that early warning sign... I can still avoid PEM "often" if I stop at the very slight scratchy sore throat. (it very very quickly though jumps if I continue on.. just continuing for 5 mins can end up having me get a lot sicker and could make the difference between me having to spend time in bed the next day or not).

Maybe it would be valuable for some if those with ME were able to learn to tell when they were reaching that limit sooner??
.........

I was with another who had ME/CFS one day, back when I still could leave my house visiting (though on very rare occasions)... she didn't understand at all when I got my early warning sign it meant I need to leave NOW.. so her talking to me for another minute, her trying to do the normal seeing someone out (usually people just dont go "I need to leave NOW and walk straight out) caused me to collapse even before getting outside and then to her shock caused me to have to crawl on the ground to get to my car (she tried to help me up but couldn't). I was weak and very visably shaking.

I think she thought she was far sicker then I as she used to spend most of her time in bed and I usually didn't at all (due to my pacing) so it was a shock for her to see just how fast I crash just from a very quick visit (30-45mins talking) which left her still feeling fine.. from my warning sign being gone over for that minute or two. (unfortunately it freaked her out so much she never invited me back). and I spent the next two days quite sick from it.

 

[Mij]

Same here Mij. I'd do a day of rest before it to make sure I was okay doing it and "possibly" get through a 2 day one OK as far as ME crash goes (though knows, maybe my result would be far worst then I think due to what they measure). I know I certainly wouldn't get through 3 days without paying the price. Have you worked out exactly how many days in a row you are okay with doing things before it hits? Do you do what I do and have set rest days in your weekly routine so you can go through the week okay ME/CFS was as long as you stick to daily limits and don't over do on a day.

Yes, I definitely have rest days. My week is planned in advance. My meals are prepared in advance if I have appointments, grocery shopping, power walking, socializing etc. so I don't have to cook meals. I also avoid talking on the phone too long etc I preserve my mental and physical energy to do other things.

In general I don't/can't do activities 2-3 days in a row, my stamina is just not there on the second day. But I have had times when I was able to do 2 days in a row and feel ok

Many times I will start to feel viral if I overdo and at first I thought it was a coincidence but it isn't . Doing activities 2-3 days revs up or affect my immune system..

 

[Mij]

Though my ME crashes now days are very small.. I need to really make sure they don't happen often (any more then a very small crash once a fortnight puts me at risk).. regular crashes, they put me at huge risk of possibly ended up full time bedbound again for a very long time. And with each crash, its a risk I wont get my already very poor baseline back. I know I cant count that I will.

I know from past experiences that we can't keep getting PEM over and over again. Even though my baseline has improved, I know now (finally got it through my head) that I can easily got back to bedbound or housebound again. Planning and pacing is the only way to stay stable.

 

[Mij]

I'm still trying to determine whether resting when I don't feel the need to is beneficial. What I mean, is to stop and rest(lie down) for half an hour throughout the day even when I don't feel the need. I think it was @Kimsie who proposed this.

 

[SDSue]

she didn't understand at all when I got my early warning sign it meant I need to leave NOW.. so her talking to me for another minute, her trying to do the normal seeing someone out (usually people just dont go "I need to leave NOW and walk straight out)

This! It seems so rude to those who don't know. But when it's time, it's time.

 

[taniaaust1]

This! It seems so rude to those who don't know. But when it's time, it's time.

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"

 

[Kati]

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.

Funny you ask... i am in the midst of a science experiment... I will let you know how long. For now it's not that much fun...