This blog entry is aimed at exploring the definition of ‘Post-exertional malaise’ and determining if it’s an appropriate term to label what CFS patient’s experience. I will also outline some methods that have helped reduce the length and severity of my ‘post-exertional malaise.’
To understand the meaning of “post-exertional malaise” it is necessary to separate the expression into single words and then translate them. ‘Post’ in this context is defined as “After.” ‘Exertion’ in defined as “(The) use of physical or mental energy; hard work” (WordNet by Princeton University.) ‘Malaise’ is defined as “a feeling of general discomfort or uneasiness” (Encyclo, Online Encyclopedia.) Combining these meanings, ‘post-exertional malaise’ translates to “After the use of physical or mental energy (hard work), a resultant feeling of general discomfort or uneasiness.”
What is ‘Post-Exertional Malaise?’
I will now compare this definition of ‘post-exertional malaise’ to what I feel like after exertion. I wrote a blog entry discussing the serious nature of CFS and how severe CFS is for me, it can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/16/how-severe-cfs-is/
In this blog entry I described my limits as:
“
- Not being able to be out of my bed for more than an hour a day.
- Not being able to talk too much. It takes a lot of energy for me to talk and I can only say about 200 words in an entire day. This is equivalent to you reading about 2 paragraphs out loud and then not being able to speak for the rest of the day
- Not being able to walk very far. My limit is 100metres (or about 1 minute.) Some days my limit is less as I may go to my letterbox and back and then ‘crash.’
- I cannot tolerate much stimulus.
- My ability to cope with stress is impaired, so I purposely try as hard as possible to avoid conflict around the house.
- I am not able to think too much. For instance if I played a game of chess I would definitely ‘crash.’
- I’m unable to leave my house for long. If I have been driven away from my house and spend 30 minutes in the car before returning to my house, I will ‘crash.’”
I continued to state that if I extend myself beyond any of these limits, I will ‘crash.’
“This concept of crashing is difficult to convey to someone who hasn’t experienced it. As my CFS has progressed from mild to moderate to severe, the severity of my crashing has also increased proportionally. If I go outside just one of the limits mentioned above I will crash. For me at the moment crashing involves lying in bed for up to 2 weeks. I feel like I am a vegetable and am unable to role onto my back. I lie on my side and every few minutes spit mucus into a bin. I am unable to talk at all as my body has been draining of the little energy I had. The pain of crashing is like no pain I have ever experienced before. Prior to CFS I had only moaned in pain on 2 or 3 separate occasions when I was ill. When I crash I moan in pain for days on end and my body just feels like it’s begging for mercy. My cognitive abilities are also severely affected when I crash and if I was asked what 2+2 equals, I wouldn’t be able to tell you as my mind shuts down. This crashing lasts from several days to several weeks if I go outside just one of the limits mentioned above in the above ‘limits’ paragraph.”
Medically, the term “crashing” is a slang term and not a scientific or official term. What I describe as “crashing,” is medically described as “post-exertional malaise.” I will now compare what I experience in ‘crashing’ to what medical science refers to as ‘post-exertional malaise.’
As defined above, ‘post-exertional malaise’ is: “After the use of physical or mental energy (hard work), a resultant feeling of general discomfort or uneasiness.” Factors other than the use of (exertion) “physical or mental energy” lead to me experiencing post exertional discomfort. Therefore the definition of “post- exertional malaise” is too narrow. The definition should also include (at least); sitting up, talking, experiencing stimulation and experiencing stress. The definition of ‘exertional’ includes “hard work.” I suffer after easy work such as sitting up or walking less than 100 metres, therefore the term “exertional” is again inappropriate. The term “exertional” in the context of “post-exertional malaise” is therefore either an inappropriate term to use, a too narrow definition and/or not an appropriate part of an expression to label CFS patients with.
The term ‘malaise’ was defined earlier as “a feeling of general discomfort or uneasiness.” After any form of “exertion” or other factors, I will be moaning in pain for days on end. Moaning in pain is a consequence of severe pain not “general discomfort or uneasiness.” I also experience specific cognitively and muscular pain after exertion. This specific pain is different from “general discomfort.” I also experience “general discomfort” however this is a small fraction of the consequences of exertion. Based on these factors, the term “malaise” in the context “post-exertional malaise” is either an inappropriate term to use, a too narrow definition and/or not an appropriate part of an expression to label CFS patients with.
I have demonstrated that the terms “exertional” and “malaise” in the context of “post-exertional malaise” are not indicative of what CFS patients experience or what causes the experience. This argument is contingent on my CFS ‘crashing’ being typical of other CFS patient’s ‘crashing.’ If medical professional describes my symptoms as ‘post-exertional malaise’ (which they have) the argument is no longer contingent upon anything. My argument does prove that what medical science refers to as “post-exertional malaise” is different to what I experience. My argument also suggests that (based on one former contingency, which is no longer a contingency) although “post exertional malaise” is known as a hallmark symptom of CFS, it is an inappropriate term to use. I am not familiar with any terms that can succinctly describe this symptom such is the uniqueness of CFS patient’s response to exercise and the consequences of going beyond their limits.
The Canadian Consensus Criteria does refer to the colloquial term “crashing.” I find this a more appropriate term than “post-exertional malaise” and will use this term henceforth.
How to Gain Relief from “Crashing”
If I could eliminate one symptoms of my CFS it would be the crashing. I would love to abandon my limits and do what I pleased. I would also love not to experience the severe pain as a result of surpassing my limits. Extending one’s limits and avoiding crashing seem to be two facets of the same problem. They are inextricably linked in that the limits define the crashing.
There is little online regarding what helps improve a CFS patient’s symptoms when they are in a crashed state. Despite crashing being a necessary condition for a CFS diagnosis, there are no recognised or widely accepted treatments. I have experimented with methods to aid me when I am in a crashed state. I will examine what I have found effective to reduce the effects of crashing.
Pacing
This is an obvious factor that encompasses knowing your limits and staying within them. Although in the spur of the moment it is easy to surpass your limits, it is imperative to define your limits before you start a task. An example of this is: you know you are able to go shopping for precisely 10 minutes and return home without feeling any after effects. After shopping for 10 minutes you are feeling ok and have not crashed hence continue shopping for another 10 minutes. Despite feeling ok at the time you will pay for it sometime in the future. With CFS it is important to have well defined limits and to stay well within those limits. Before starting any activity it is essential to tell yourself what you are going to do and not get carried away and do more. It is important to tell yourself that you may still be feeling okay but you will not do anymore. Be strict with yourself and almost obsessive compulsive in watching your limits and working to stay within them.
Crashing is a unique experience. The best analogy I can think of involves a cliff. Imagine that you are walking towards the edge of the cliff but are not allowed to look down to determine where exactly the edge of the cliff is. You know that if you go too far you will plunge down and “crash.” You are feeling ok so you continue and the closer you get to the nebulous edge, the closer you come to crashing. You may take just one step too far and it’s too late, you have crashed. It is always safer to err on the side of caution than to take that extra step into the unknown. If you graph this hypothetical cliff scenario it would look like this: X-axis is distance and Y-axis is how you are feeling. The cliff is the graph itself and you are an object following the trajectory of the cliff. If you take one step too many on the distance axis, you will fall to zero on the ‘how you are feeling’ axis.
It is important to try and avoid crashing at all costs. If you are in a crashed state these are some ideas and treatment that have worked for me to improve the severity of my crash and the length of my crash. They have all worked for some period of time however some of them have worn off and stopped working.
Meditation
In the past when I crashed I would meditate for 15 minutes. After meditating, my crash would improve by 80% in severity and 80% in duration. The type of meditation I would use involved focusing on my breathing. I would breathe in and out and count “1” in my head. I would then breathe in and out and count “2” in my head. This would continue up until “10.” Upon reaching “10” I would start again at “1” again and continue this process for 15 minutes. I would meditate with my eyes closed and put all my attention towards focusing on the breath, not letting any outside thoughts disturb me from my focus on my breathe. Meditation worked almost like a miracle to help with my crashing for a long period of time. Unfortunately it has now stopped working for me when I crash. Meditation has many physiological effects on the body which may explain its mechanism for action in helping me with crashing.
Warm Baths
Having warm baths when in a crashed state helps me sometimes but not other times. Some CFS patient’s have adverse effects to warm baths so this is by no means a universal treatment for crashing. Warm baths may help as they relax the body into what is similar to a meditative state. Meditation has many physiological effects hence warm baths may be a method to aid with crashing.
Cold baths
Cold baths are less effective for me than warm baths when in a crashed state. They do however sometimes help me. The reason they help may be due to the adrenal glands being stimulated due to coldness.
Massages
Massages tend to help me with both the severity and duration of a crash. When I receive back massages from a family member for 15minutes I can feel an immediate reduction in the crashing severity.
Liquorice
I first came across using liquorice for crashing by accident. I started to eat some liquorice as I had heard it can help with adrenal fatigue. I was then in a situation in which I would always crash however I did not crash in this instance. Since this event I have used liquorice after I have crashed and it has aided me in recovering from a crash. I have not used it again in helping me avoid a crash as at the time I never anticipate that I will crash. It may however be useful for some people if they know they are going to crash. Some CFS patients may have a worsening of symptoms from trying liquorice. Liquorice should not be used by those with high blood pressure. An article about liquorice for treating CFS (this article is not about crashing) can be found here: http://www.jacemedical.com/store/licorice1.html
Liquorice may help me when I am in a crashed state due to its effect in helping the adrenal glands.
Other Supplements
I have never benefited from any other supplements when in a crashed state. There is anecdotal evidence online regarding some patients having crashing severity and length markedly reduced due to taking supplement such as D-Ribose.
Conclusion
The term “post-exertional malaise” is a misnomer. It does not accurately describe what I or many other CFS patients experience. A more accurate (albeit slang) term is ‘crashing.’ It is ideal to avoid crashing if possible by planning ahead and setting limits. When I crash, I have been aided by; meditation, warm baths, cold baths, massages and liquorice. There is no universally recognised treatment to aid when one is in a crashed state. These treatments have been effective for me at one time or another but have not alleviated the crashed state. As the mechanisms explaining why CFS patients crash aren’t understood, treatment hasn’t been forthcoming. Some recent research led by Dr Light may be starting to shed some ‘light’ on crashing in CFS patients. The abstract of this study can be found here: http://www.ncbi.nlm.nih.gov/pubmed/20230500 and a summary of this study can be found here: http://www.cfids.org/cfidslink/2009/080503.asp
UPDATE: November 2011
- Some patients report that taking an electrolyte solution such as Hydralyte or Aquaforce improves their crashed status.
- A few patients claim that elevating their legs/feet may help ward off an imminent crash. The theory behind this may involve an increased level of blood circulation to the brain. http://www.mecfsforums.com/index.php/topic,9321.0.html
- During mid-2011 a paper titled ‘Myalgic Encephalomyelitis: International Consensus Criteria’ was published in the Journal of Internal Medicine by Carruthers et al. Within this criteria, the authors use the term ‘post-exertional neuroimmune exhaustion’ as a synonym for what was previously known by patients as ‘crashing’ or ‘post-exertional malaise.
Update: January 2014
- I have found frozen Hydralyte iceblocks to be most effective for me when I crash
Update: January 2017
- I have recently found that sodium bicarbonate (aka baking soda) wards off my post-exertional malaise. I take ¼ to ½ a teaspoon just prior to doing an unavoidable activity that would normally induce a crash. I have so far taken sodium bicarbonate on 6 occasions just prior to tasks such as going to the doctors. In the past, a crash was inevitable however as a result of this treatment, I am yet to crash. The sodium bicarbonate’s mechanism of action may involve causing a reduction of the lactate in my body. Several other patients have noted a similar effect from this treatment.
- Hip on Health Rising has written about similar treatments that when taken before exertion may ward off post-exertional malaise. These include; branched-chain amino acids, catalase, citrulline, coq10, creatine hydrochloride, d-ribose and sodium bicarbonate. Hip’s article specifies the necessary doses of these treatments and the rationale behind each ‘crash buster.’ The article is worth reading and can be found here.
Living With Chronic Fatigue Syndrome 
Hi,
This is a very important article. It is very difficult to explain this phenomenon to others, to those of us who do not have ME/CFS. I have seen it up close with my daughter and I still have trouble trying to put it into words for others, or to even belief it myself. The core of the illness resists description or believability. What you have written it a very clear first hand account of this linchpin aspect of the illness. I admire and appreciate your writing this. It helps someone like me to get inside the world of my daughter and to try to feel what she feels. I do not want to presume, as I do not have the illness, but this article is helpful to me. Thank you very much.
Chris
It took me 19 years, my own research and my having to eliminate doctors, to find that this is what I have. Fortunate for me, I can do about an hour’s worth of physical activity or work before the lethargic and painful crash happens. It used to be 10 minutes like you but, I now take Low Dose Naltrexone 2.5 mg that has given some relief. This condition has robbed me of life and there’s been times when I felt I was just going to die soon then, I started reading articles like yours and I no longer feel alone. Been written off by doctors a hundred times with a hundred excuses. I’ve had no luck with D-Ribose but, will give it another look. Liquorice? I can do that. Feel better!
@Voltin B
Thanks for the comment! I am pleased to hear that LDN has provided you with at least some relief. I have taken it for about the last 6 years to help with sleep. The liquorice and hydralyte are things that I found helped me largely through trial and error. I strongly recommend trying the Hydralyte iceblocks or a similar product as I find it at least personally to be the most beneficial aid. I find it peculiar that more isn’t written about ‘post-exertional malaise’ as it is in my opinion the central symptom of this illness. Wishing you the best in health!
I thought this post was very good as well. I, too, have found meditation helpful in a crash (and out), but my biggest help is similar to taking liquorice, in that it supports the adrenals. I take a small amount of hydrocortisone daily, and when I’m in a crash, I add about 1/2 a cap to my daily dose. I find it helps pull me out of crashes, which is extremely helpful.
I thank you both for your comments, I am grateful for your kind words.
Thanks Alexis for sharing what you have found helpful when in a crashed state. I have searched extensively on the internet for any information regarding what has helped ME/CFS patients when in a crashed state. I found basically nothing other than the obvious information about pacing. Your words are very beneficial. I start Fludrocortisone tomorrow and if that has no effect on me I will look into Hydrocortisone and do some research on it. I am glad that you have also found meditation helpful when in a crashed state. Based on both of our experiences with meditation, this is something that should be studied more in depth in regards to crashing and also something that should be more widely broadcast to help ease other ME/CFS patient’s pain in crashing.
I was reading this and your other post about what it is like and couldn’t help but remember when I got West Nile Virus (really). The exhaustion was incredible at first. It steadily got better over the year but the first month I remember how I would lay on the floor to take a break on my way to the bathroom, and how stairs were insurmountable. It was this overwhelming drain of my mental and personal energy. Thanks, this was very educational.
Thank you 😀
Really excellent article. Fully agree with you about the idiocy of the word ‘malaise’. It has always angered me, and I’ve always wondered why so many patients use the term without comment. Perhaps they were insufficiently literary in their former lives and do not recognise a term that reeks of Victorian indolence when they hear it (like the picture of a lady swooning on a fainting couch that Straus used in his odious talks about CFS). I have named it ‘post-exertional collapse’ in my attempts to describe it to doctors and others. The ‘exertion’ part doesn’t bother me. Don’t agree that it automatically means ‘hard work’. It does not. Any exertion will do, as I will explain to others, including the exertion of brushing your teeth or writing a coherent paragraph on a blog (so must go and lie down now!).
Thank you for your excellent blog – and the beautiful stone bridge in a fog at the top of your page – it always makes me feel peaceful and soothed when I see it. I’m going to try some licorice too!
(who coined the term PEM, anyway? does anyone know?)
I’ve had CFS with comorbid fibromyalgia and Graves’ Disease for the past 8 years. Throughout these 8 years, I have had maybe a dozen crashes. The only way I can describe the experience is that it has felt like some kind of adrenal crisis, insufficiency, profound exhaustion & weakness where no stress whatsoever is tolerable. The last one I had lasted for weeks. I had to take short term disability from work. I realized at one point that it felt exactly the same as when I’d had a case of mono nearly 40 years ago. It’s like the cells just won’t hold a charge. Very outside the usual experience.
I think what you wrote described it so well. I have been trying to find something on here that would explain how my body can not handle any type of stress at all… mental excertion is the worst for me and then physical pain.
I hope we all keep finding more info. that explains what we have to deal with everyday.
Thank you
HI
I think I am experiencing these crashes about 24 hr after exercise. There seems to be an effect if I am dieting or if my exercise exceeds an hour. I have also crached after non-exercise activity like seeing a live show with a lot of visual and sound stimulation. I find that taking a nap or just lying down for a couple of hours helps. I was diagnosed with Graves Disease in 2005 but don’t have any other symptoms of CFS. My Dr tried me out on Pritique and I felt like I had more evergy overall but my blood pressure when up. I found your site very helpful.
I was diagnosed with CFS 20 yrs ago. Pacing of activities and sufficient rest seems to help the most. Life has been extremely difficult since my husband died 16 months ago, leaving me without his help plus a drastic income change. The social isolation is especially difficult. If we can’t keep up with the crowd, we get left behind, and that hurts. My laptop and TV keep me connected to the outside world. For the most part, antidepressants have made me worse. Pristiq seems to be OK, it helps with the blood pressure drop when standing too long.
Thank you for an extremely well written and thoughtful piece. I had company for three days and I know now that it will take at least two to three weeks of lying on the couch to recover. That is the only thing that I can do phsyically and that means that getting small things done like going to the market or the pharmacy will be next to imposstible for me to do. When I am like this I keep putting things off, not out of prograstination but because of the crash I am in. I wish that I had more helpful information. I do find that mediating in the morning helps me at least get my pets and myself fed and taken care of. Thanks again to all of the suggestions given by all of you who have shared.
Thanks for sharing the info. I too agree that “malaise” is a totally inapropriate word in the context. Only those with CFS who really crashed knows how inapropriate it is… From now on, i’ll take for me the “post exertional collapse” too. I imagine that creating this blog has made you crash too… But, that was for a good reason. Good luck with your sintoms… A better understanding of the illness always help each others… Hope medicine soon understand it better…
I once joked to a friend that ‘i am sick and tired of being sick and tired!”
Sense I now suffer from cronic fatigue syndrome, I no longer find that statement to be funny. .
My mother asked me the other day if she thought there might be a local group that I could join, for cronic fatigue sufferers. I replied, ” if there is, no one would go mom, they wouldnt have the energy” This breif conversation gives you an idea of how misunderstood CFS really is.. Unless you have suffered or are suffering from it, its hard to understand just how terrible it can make you feel and how very little ambition you have AND how important it is to conserve the energy you do have because you can expend it very quickly.I actually have an “energy budget” ~ i have to follow carefully in order to be able to get through an entire day. I also had to have several doctors appts and an actual hospital stay before getting diagnosed.
Thank you for this wonderful and informative article. I wish all of you the best of luck and a healthy recovery
Thank you so much for this article! There is so much I would love to say, but I need to conserve. What I need to say is I was pretty against trying cannabis, but gave it a shot. It helps SO much!! It doesn’t make it go away, but makes it not as bad. I go into what I call a zombie like state cause my brain shuts off or misfires…it seems like the cannabis helps keep me on this planet. It helps with pain, inflammation, sleep, the central nervous system etc etc.
Hi Lori, I am considering trying cannabis oil. I hear there are many different types though. Can you please share more about the type that is helping you? Also, does the cannabis enable you to exert yourself more without crashing, or does it just make the crash not as bad? Thank you.
Hi John, unfortunately I can’t advise you on oil since I didn’t really experiment with much, but there’s tons of info out there and I’m sure you’ll come across it. I would never recommend exerting yourself because there will always be a crash. I think it made the whole experience of post exertional malaise a bit more tolerable.
I understand precisely what you have described as crashing. For the last 12 years I have been on a bad bad flare up with no good days, hours, minutes. Talking is indeed exhausting. Sleep is impossible. However much like you I believe, I’ve responded to numerous ideas as to what might help at that moment: meditating, heating pad, gentle stretching, rubbing alcohol, vicks (lol), etc. Lately warm Epsom Salt baths…ahh! I started drinking more cold water. Im on lyrica 60mg twice a day (I am diligent in taking it) plus cymbalta. (Cymbalta helped with other FMS symptoms such as depression but very little help with the pain) Lyrica is amazing. But initially it takes me 2 days to adjust to the buzzed feeling you get. I’ve read others say “or I stopped taking Lyrica because of how it made me feel: dizzy, wobbly, etc. Too bad they didn’t continue taking Lyrica past the (initiation). No driving till that period ends)
As the other comment mentioned thank you for writing so that we can understand FMS. For me, you’ve informed me in understanding the whats-what and whats not. Although I’m unfortunately right on with describing your symptoms except for the mucous stuff. Hehe. Blessings
@Tricia
Thanks for the comment! I’m sorry to hear that you also suffer from the dreaded symptom of ‘crashing.’ It is difficult to articulate what it feels like to someone who hasn’t experienced it. I’m happy to hear that you have gained some FMS benefits from Lyrica. Wishing you the best in health!