How long does your PEM last?

[melamine]

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.

I call it low energy state (chronic, fluctuating), which I find hard to distinguish from PEM even now sometimes.

 

[Sidereal]

I call it low energy state (chronic, fluctuating), which I find hard to distinguish from PEM even now sometimes.

Fair enough. My low energy state is chronic and fluctuating but it differs a great deal from my PEM symptoms so I am pretty sure I used to be in mild PEM almost all the time when I was working full time. These days, being housebound and doing almost nothing, I infrequently get PEM (threshold for PEM increased significantly since I was bedridden + I avoid activities that would trigger PEM) but I am in a chronic low energy state.

 

[rosie26]

I was in constant PEM in my severe years. I feel like I am always suffering some level of PEM. It is very difficult to judge all the layers of this illness. There is layer upon layer and it is confusing.

 

[Apple]

It varies considerably.

Reading a magazine before bed will cause me to crash the entire day after.

A trip to the local shop (a grand total of 10 minutes outside of the house) will cause me to crash for 1-2 days

Handwriting a 1 day food diary made my right arm fatigued and borderline useless for 3 days.

If i'm really naughty (which I often am) I can push myself to spend 1-2 hours out of the house (mostly in a wheelchair). I can push through the symptoms for a certain length of time, but then completely and utterly crash as soon as i stop. I then spend 2-4 days (usually 3) feeling absolutely awful - drained, pale, sickeningly tired, fatigued, weak, in pain, achy lymph nodes, severe light and sound sensitivity etc etc You know the drill.

On day 4, i usually start to feel a little better. BUT if i do anything that requires energy (sitting or standing too long, reading, writing, watching a film, etc) i will crash quickly and the PEM will be worsened and prolonged. So i am forced to rest, rest, rest.

Day 6 or 7 is usually when I start to get little antsy and feel like i have the 'energy' to push through do something again.

But as others have said, I also feel like i'm in a continuous state of PEM. I'm never symptom free and basic day to day living is enough to cause multiple smaller crashes a day.

Deconditioning apparently(!)

 

[SOC]

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.

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.

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.

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....

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.

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).

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.

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.

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.

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.

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.

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.

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.

 

[L'engle]

@Mij @SOC CoQ10 is incredible stuff. I got insomnia the last time I took it but I have a different brand in my supplement drawer and plan to try it again once I'm out of this crash. It helped PEM for me when I was able to take it several years ago. One of my favourite supplements.

 

[SOC]

@Mij @SOC CoQ10 is incredible stuff. I got insomnia the last time I took it but I have a different brand in my supplement drawer and plan to try it again once I'm out of this crash. It helped PEM for me when I was able to take it several years ago. One of my favourite supplements.

Did you try taking it early in the day? My daughter only takes it at breakfast, and I take it a breakfast and lunch. If I forget at lunch, I don't (usually) take it later in the day because I don't want it to interfere with sleep.

My specialist did say that high-dose CoQ10 makes some (many?) people jittery, but that hasn't been a problem for us at all.

 

[MeSci]

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.

Hmmm - tricky question. Mine has varied from almost-imperceptible to having to go to bed for the best/worst part of a week at worst.

Typically, though, mine takes about 24-36 hours to start, and lasts about 2 days. I get weakness, especially legs, worsened sleep, mild nausea, poor appetite or excessive appetite, mild headache and neckache, mild transient abdominal pains, commonly URQ, loose bowels, mildish cramp, sometimes slightly low mood, maybe due to lack of sleep and/or general malaise, loss of balance, polyuria, swollen cervical lymph nodes and/or submandibular glands, intermittently-tender axillary lymph nodes, mild nasal congestion, sometimes blocked ear(s) and mild recurrence of dermatitis in palms, brain fog - that's all I can remember for now.

EDIT - and extreme hot flushes

 

[Mij]

I don't experience pain with PEM (or ever)

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.

Yes, I've tried to understand what people are describing too. I've had one relapse from taking immune modulators,- it's definitely not PEM for me.

1) I never went back to base after
2) It took 3 months to feel improved so that I could walk for some distance
3) I was worse off with new symptoms (OI and less overall stamina)

 

[Mary]

@SOC - Good thread! We're all so different and so similar too. It used to take me 3 to 4 days to recover from a crash and to recover I had to have complete bed rest. For many years my PEM threshold has been 3-1/2 hours of light activity - a little housework, a little cooking, resting in between, or running errands but no extended shopping, which always made me crash. And after my 3-1/2 hours, I could do nothing else the rest of the day. So I crashed a lot and also got sick every time I crashed. So at one point I had maybe 2 "good" days a month when I wasn't crashed or sick or detoxing and on the good days I enjoyed my 3-1/2 hours of light activity, which I know is more than many of you have.

I'm not sure exactly how it's happened but my recovery time has gradually lessened over the years. It's probably partly because I've learned so carefully what my limits are, so I don't over do it as much. I think it really became noticeable when I started methylfolate 5 years ago. But again, as someone else said, I was still limited to my 3-1/2 hours of light activity, so even though I recovered more quickly, I could not increase my activities.

I've done a lot of things since I first started crashing 17 years ago - worked on adrenals, thyroid, liver detox, mercury detox, started taking HCL, got my digestion sorted out, and found I needed a lot of potassium - this was huge in helping my energy. I think I was chronically low in potassium and never knew it and that causes fatigue. Also am taking a healthy dose of B6 in addition to everything else.

I've lost track of everything. But on top of all this, last November I started taking branched chain amino acids and glutamine and a couple of days later overdid it, crashed, and then amazingly recovered pretty much by late in the day - it was amazing. The glutamine did make me detox at first - it's used in phase II liver detoxification, but I'm now tolerating 2 grams a day with no problem, and I'm recovering even more quickly. The BCAAs and glutamine I think are making a huge difference. Unfortunately, I've been sick for over 3 weeks now so have not really been able to push myself - I want to find out what my limits are now, so it's been very frustrating but I'm working on a couple of different things for my immune system.

I don't know if the BCAAs and glutamine would have helped as much if I hadn't done everything else I mentioned above. Here are a couple of articles about BCAAs which got me started:

http://jn.nutrition.org/content/136/2/544S.full
http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=41341
http://www.ncbi.nlm.nih.gov/pubmed/11310928
http://www.ncf-net.org/forum/Fword.htm

 

[Mij]

Did you try taking it early in the day? My daughter only takes it at breakfast, and I take it a breakfast and lunch. If I forget at lunch, I don't (usually) take it later in the day because I don't want it to interfere with sleep.

My specialist did say that high-dose CoQ10 makes some (many?) people jittery, but that hasn't been a problem for us at all.

I take 200mg/day. 100mg in the morning and 100mg in the early afternoon. I had to stop because it did cause some wired feelings and affected my sleep. I'm going to restart as soon as I get my order, but I will take breaks in between this time around.

 

[Dreambirdie]

From here to eternity.

In other words it varies hugely.

 

[SOC]

I take 200mg/day. 100mg in the morning and 100mg in the early afternoon. I had to stop because it did cause some wired feelings and affected my sleep. I'm going to restart as soon as I get my order, but I will take breaks in between this time around.

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.

 

[Mij]

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.

 

[L'engle]

Did you try taking it early in the day? My daughter only takes it at breakfast, and I take it a breakfast and lunch. If I forget at lunch, I don't (usually) take it later in the day because I don't want it to interfere with sleep.

My specialist did say that high-dose CoQ10 makes some (many?) people jittery, but that hasn't been a problem for us at all.

Yup. I only take supplements in the morning. I'll have to try it again sometime in a very small amount.

 

[Sushi]

I have one thing in my pattern that I haven't seen in the previous posts. If I exercise too strenuously (I can now handle an hour's pilates class once a week, generally, without PEM), I will feel more energized and have fewer symptoms for the rest of the day. Like it will feel like a good idea to mop a floor at 9 p.m.!

When I do this, I know it at the time as I have not sufficiently respected my heart rate monitor--usually because the class is doing something unusually aerobic (and fun!) and I want to "keep up with them."

My pay-back is the next day. I wake up with a headache, rubber legs, and feel sort of "virusy." I don't have to stay in bed but I do have to mostly sit down and do quiet things for a day. If I do this, it is usually gone the next day. This is now...it represents an improvement. PEM used to last longer and come on at a lower level of exertion.

Sushi

 

[melamine]

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.

I have never had any effect from CoQ10 and gave up on it, but I may try again after reading of your experience - if I can afford to.

 

[melamine]

I have one thing in my pattern that I haven't seen in the previous posts. If I exercise too strenuously (I can now handle an hour's pilates class once a week, generally, without PEM), I will feel more energized and have fewer symptoms for the rest of the day.

@Sushi - I am not at your level of functioning but I'm familiar with what you're describing - where I'll feel more energized by the end of the day sometimes but then crash harder the next day.

I was reading about a cytokine study on PR today in which it was stated that they were found to be lower after exercise in PWCFS, not higher, and it was supposed to support the conclusion that PEM did not involve the immune system. But this scenario was the first thing I thought of - why we often feel initially better or no worse. I didn't read the actual study referred to but wondered if they had measured cytokine levels immediately after instead of 24-72 hours later.

 

[Mij]

@melamine hmm if I try to do my routine power walks and my immune system is compromised at that time, PEM can start within a few hours instead of 16-24 hrs later.

 

[melamine]

hmm if I try to do my routine power walks and my immune system is compromised at that time, PEM can start within a few hours instead of 16-24 hrs later.

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.