Post-Exertional Malaise: When The Other Shoe Drops

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by Jody Smith

Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so.

Many years later it rolls off the tongue, though not in a pleasant way. Each syllable brings home a sense of irony that a term that is too hard to remember and to say should be such a central facet of ME/CFS.

You might have symptoms I don't have. I may respond well to treatments that have no positive effect on you. But one thing we all have in common is post-exertional malaise.


Waiting for the other shoe to drop

Some of us are managing to keep it at bay by pacing ourselves and living in tiny doses. Others are still under its jackboot and focusing on managing to breathe.

None of us ever really know for sure whether it is waiting around the next corner, like a marauder ready to bring us to the ground. In some ways we are always waiting for the other shoe to drop. And when we do get hit with it, none of us ever know how long or how severe its repercussions will be this time.

Two days? Two weeks? Two months? Two years?

Always exciting to be living a life where the simple act of going to the store one time too many can trigger a relapse that lasts far longer than the ill-fated shopping trip. It can even be a risky business to stay up later or get up earlier than normal.

To spend time on the phone (I know, some of you are reading this and shaking your heads because you haven't been able to go near a phone for months or years) or to have someone drop in on you (my apologies to those who haven't had anyone drop by in months or years) can be the monkey wrench that gets things (not) moving once more.

Then it's back into bed for those who had been able to leave it. It's blinds lowered, music off, and doors closed to concerned family members as we ride through the waves of sickness, the sensations that are beyond description, that are simply not ever experienced by those that are well.


PEM'd

Post-exertional malaise. My ability to think a complete thought would disappear. My ears roared and my balance disappeared.

If I could have talked coherently, I'd have said I felt seasick, my sense of physical self undulating, in a room that seemed somehow to ... tip and change shape on me.

I felt as if every molecule in my body was oozing poison, as I was overtaken by the ebb and surge with a monotonous rhythm, for days or weeks or months or ... You know where that sentence ends, don't you?


What do we know about PEM?

Beyond our own personal horror stories, what do we know about post-exertional malaise?

Cognitive dysfunction, fatigue, pain, swollen lymph nodes and sore throat are common symptoms. They often don't show themselves till after we've been active. It is later that we get knocked over. It might be shortly after we've been active, or it might not hit until days or even weeks later.

We know that several body systems are affected by ME/CFS, such as the cardiovascular system, central nervous system, energy metabolism and immune system. ME/CFS can bring with it abnormalities that are cellular, genetic and systemic, and triggered by exercise. Some or all of these malfunctions may be linked with - and exacerbated by - post-exertional malaise.

People with ME/CFS experience a lowered pain threshold after exercise, unlike healthy people. We experience greater cognitive dysfunction after exercise. This differs from the experience of both those who are healthy and those who suffer from depression.

We recover from muscle exertion at a very different rate than other people. The progressive deterioration over a period of days, rather than immediately after exercise, is a hallmark of ME/CFS. And if exercise is continued daily for several weeks, things almost inevitably get worse.

Other chronic illnesses may include fatigue, but many of these types of conditions will improve in terms of aerobic capacity and exercise tolerance with regular exercise. This is not true of ME/CFS.

In testing done over a two day period, by the second day of testing those with ME/CFS will generally experience a decrease of 20 percent in cardiopulmonary function. By comparison, even people with pulmonary hypotension, cardiac issues, cystic fibrosis or end-stage renal disease, all of which encompass cardiopulmonary problems, don't decrease by more than 7 percent.


Does it help to know?

Does it help to know that your experience is backed up by these observations, that there is "proof" that what you live with is not imaginary? Maybe not yet. It doesn't make our days any easier, it doesn't give us any real tools to ease the burden.

But research for us is being done, and after we've being invisible for so long, knowing that this search is being carried out on our behalf by people who believe our suffering is real, makes a difference.


Further Reading

Post-Exertional Malaise
http://chronicfatigue.about.com/b/2...e-syndrome-basics-post-exertional-malaise.htm

Post-Exertional Malaise: Cause and Effect
http://www.cfids.org/cfidslink/2010/080403.asp

Post-Exertional Malaise: Perception and Reality
http://www.cfids.org/cfidslink/2010/080402.asp

Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
http://ptjournal.apta.org/content/90/4/602.full?sid=edf6f9b1-e89e-41ff-bf4d-bcb86f782f63

Unravelling the nature of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: The role of elastase, complement C4a and interleukin-1β
http://www.meresearch.org.uk/research/studies/2010/malaise.html




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Comments

I have learned that In my case, PEM is a manifestation of OI. The reason I am sure is because I had the most horrible PEM. I felt so miserable after any exercise or just daily live activity. And the first day I took midodrine ( a Vasocontrictor) the PEM went almost all away (I just cannot go running yet).
 
I love this article. I love real statistics and facts like the 20% drop in cardiopulmonary function while other illnesses have only a drop of 7%. Really helpful facts to help educated healthies with.
 
I have learned that In my case, PEM is a manifestation of OI. The reason I am sure is because I had the most horrible PEM. I felt so miserable after any exercise or just daily live activity. And the first day I took midodrine ( a Vasocontrictor) the PEM went almost all away (I just cannot go running yet).
I am thankful for your comment, Inester7. I have been looking at Midodrine to finally throw something at my O.I., and thanks to your post, I am encouraged to bring it up with my doctor at my next appt. I'm also considering Florinef, but that one gets a little more involved with the need to increase fluids, salt intake, and Potassium supplements. I wonder if both Midodrine and Florinef can work well together.
 
Thanks Jody. What frustrates me is that sometimes I can do an activity and don't crash and other times I do. Anyone else notice this?
I think sometimes we can build up a reserve if taking things very easy for a while. Or we can burn through any reserve by constantly pushing just a little bit but not enough to trigger an immediate crash. Then when we over-exert with a reserve still in place, we might get away with it a bit more.
 
I wonder if both Midodrine and Florinef can work well together.
Sorry forgot to mentioned, I did start florinef first and saw great improvements, went from bed to working in a few days. But the midodrine took me to a much better place. I do take both now.
 
Thanks Jody. What frustrates me is that sometimes I can do an activity and don't crash and other times I do. Anyone else notice this?
Barb
Thank you, Barb. That's one of the extra special beauties of PEM, I think. Sometimes we can tell what might be a factor, and yet so often, at least in my case, I can't. Could be a shift in the barometric pressure, or extra noise in the neighbourhood, extra car exhaust in the area ... Why this time and not that time? Sometime we know ... and sometimes we just don't.
 
Thanks Jody. What frustrates me is that sometimes I can do an activity and don't crash and other times I do. Anyone else notice this?
Barb

i notice this and it frustrates me the most - because there is nothing to go by

my throat flaring up is a good marker for me but it can be too late by then - sometimes its a precursor sometimes its with delayed fatigue.

no-one seems to understand this. its what makes 'pacing' pointless - although staying within that energy ceiling level which keeps on secretly moving is vital to preventing a major relapse.
 
Thanks Jode for yet another interesting article.
Regardig muscle recovery - the thought usd to be that muscle pain after exercise was due to "lactic acid build up"
Iread that this idea is now discounted and muscle pain - in well people - is due to tiny tears being made in the muscel during the exercise; this causes the pain and as the muscle repair themselves the re- build stronger.
So for PWME - re-building muscle requires extra energy/blood supply? And therefore akes longer?
I know someone at Victoria University here n Australa is inncluding PWME in his exercise physiology research around this topic. LEts hope something comes of it... soon!
 
Thanks Jode for yet another interesting article.
Regardig muscle recovery - the thought usd to be that muscle pain after exercise was due to "lactic acid build up"
Iread that this idea is now discounted and muscle pain - in well people - is due to tiny tears being made in the muscel during the exercise; this causes the pain and as the muscle repair themselves the re- build stronger.
So for PWME - re-building muscle requires extra energy/blood supply? And therefore akes longer?
I know someone at Victoria University here n Australa is inncluding PWME in his exercise physiology research around this topic. LEts hope something comes of it... soon!
Thanks Allyson

Let's hope some answers come from somewhere soon.:)
 
Very good article, thanks Jody. For me, it does help to know my experience of PEM is being backed up by observations during various testing. It's good to know it's finally being looked at as, as you said in the article, if they are finding what is happening, treatments may eventually be developed to at least mitigate PEM.

On another note you wrote: "ME/CFS can bring with it abnormalities that are cellular, genetic and systemic". Sorry not being a science person, would it be possible to explain what exactly these three areas of abnormalities are? eg, what would count as a cellular abnormality, a systemic abnormality and genetic abnormality. Many thanks
 
Very good article, thanks Jody. For me, it does help to know my experience of PEM is being backed up by observations during various testing. It's good to know it's finally being looked at as, as you said in the article, if they are finding what is happening, treatments may eventually be developed to at least mitigate PEM.

On another note you wrote: "ME/CFS can bring with it abnormalities that are cellular, genetic and systemic". Sorry not being a science person, would it be possible to explain what exactly these three areas of abnormalities are? eg, what would count as a cellular abnormality, a systemic abnormality and genetic abnormality. Many thanks
Good question, Anniekim :)

The research I used didn't specify about the types of abnormalities, and I am not actually a science person either, though I am slowly learning to be.:) Let me look into this, and I will come back to this thread with some kind of answer for you.
 
It's amazing to read about these experiences, as a non-ME/CFS person (although I'm only semi-functional and suspect that some of my symptoms have a similar basis). I'm also always comforted by the compassion people show on here for others, the awareness of others who are also living with these experiences. Nightmarish to think of going through these things but being "invisible", even as I also know that nightmare, to some extent.

Very nicely written. I look forward to reading these featured essays for their insight and prose and the incredible nature of what people have to live with, and yet do.
 
Thanks Jody. What frustrates me is that sometimes I can do an activity and don't crash and other times I do. Anyone else notice this?
Barb
I don't suffer from CFS, I know that I'm lucky. I do get wornout by easy daily chores. When I was younger, exercise like jumping on the trampoline made my hands swell. This article is very impressive, well writen, too.