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Chronic Fatigue Syndrome hands each sufferer a unique grab-bag of symptoms. But one thing we all share is post-exertional malaise. It's the phantom that we healthier ones glimpse over our shoulder, on days of good energy and clear heads. For those more grievously afflicted by CFS, it's the heavy arm that crushes them into their beds, denying them even the ability to struggle.
It's the CFS "crash" after the "push", when we've done too much. (Never entirely sure what that is until afterward). Later — tomorrow, or the next day, we'll have a crash. Homeostasis — our bodies' ability to stablilize — leaves us for a time. Maybe a long time. We'll find out how long, when ... or if .. this crash passes.
We only know It awaits us if we expend more energy than we can afford. And though we know It's lurking, we cannot know when It may strike.
A family visit may put us to bed for days. Gentle exercise can initiate muscle pain for months. We didn't lay down after dinner. We bought groceries instead of napping.
Some days we can get away with a little push. And some days we can't. Later ... we'll find out.
We'll celebrate a good day by picking up beloved hobbies abandoned long ago. Laughing with a friend. Enjoying a walk in the fresh air.
"Slow down," say our spouses, afraid of losing us again. "Take a break," say our friends, worried by our merry pace. "I'm okay," we say, and mean it. We feel invigorated.
We've been trapped in this CFS snare before, but it keeps reappearing in new guises. We can still be caught unaware. "How can this hurt me? I'm fine."
Later the sick sensations of CFS post-exertional malaise pour in like a heavy fog on the rolling deck of a storm-tossed ship. And we realize with a sinking feeling, It's here. And wonder how long the crash has moved in for THIS time.
Researchers have theories. Our mitochondria (the little batteries in our cells) are weak. We don't oxygenate properly. Our immune systems are over-active in some ways and under-active in others. Our blood volume shrinks for no known reason and affects everything. We're full of viruses.
Wait, there are more theories.
No, wait.
The theories do nothing for us. They haven't helped us determine what's wrong and how to fix it. And they haven't helped us overcome CFS post-exertional malaise.
Resources:
Phoenix Rising
https://phoenixrising.me/
M.E. / Chronic Fatigue Syndrome News Homepage
https://www.prohealth.com/me-cfs
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
http://www.patient.co.uk/health/Chronic-Fatigue-Syndrome-/-ME.htm
Postexertional Malaise Testing Can Help With Disability Claims
http://www.fightingfatigue.org/?p=1294
I spent 15 years losing the battle against CFS. Two years ago, I found treatment that worked for me, and now I am making a comeback.
Add a Comment2 Comments
I so understand what you are saying.
I also right now am in the middle of a crash, -- or do I have the flu? No matter, really, I treat it the same either way. The difference between us and the rest of the world is, we get this type of thing far more often than they get the flu. And instead of knowing that within a week or two we'll be over it, we don't know that at all. It can last for months, sometimes for years, for many of us.
I'm expecting to come out of this, or at least rise to a better state fairly soon because I have learned how to bend with this condition and not fight it so much as I used to. But ... we never know when it will end until it does, do we.
You're wise to spend as much time in bed as you can, and to treat this seriously. You have a better chance of coming out of it sooner by doing so.
I hope that you will feel better soon.
November 12, 2009 - 9:30pmThis Comment
Thanks for your great description of post-exertional malaise. You’re right that it’s the thing that haunts those of us with CFS/ME. I don’t know why the descriptions of CFS don’t emphasize it more, because it’s really the defining characteristic of CFS.
After several years of living with CFS/ME I have learned to be careful to pace myself on my good days so that I don’t overdo, to stay within my “energy envelope.” The problem is that it’s an ever moving target. Also, I can go from fine to over-tired in moments without warning, often at an inopportune moment, like when I’ve filled my grocery cart and still need to check out, or I’m in the middle of a haircut. Or sometimes there are situations when you just can’t stop and rest when you need to. For instance, a few weeks ago I had to take my husband to the emergency room, and we were there for several hours. I knew that I’d have to pay for that one, and I have. I’ve been housebound and mostly bed-bound since then.
For me, the “malaise” usually feels very much like having the flu: all-over aching, feverish feeling, chills and sweats, and exhaustion. I even wondered if I might have caught the flu in the ER, and then thought, how would I know the difference?
November 12, 2009 - 5:49pmThis Comment