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.
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.
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.
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 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 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.
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.
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.
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.