Post-exertional malaise is definitely a symptom of ME/CFS that sets the illness apart from so many other fatigue-related disorders. I was reading an article by the CFIDS Association on post-exertional malaise that states that…
…studies by the Pacific Fatigue Laboratory at the University of the Pacific have shown that the exercise physiology of CFS patients is quite different from and, in many ways, worse than people with cardiovascular disease.
I know for a fact that this is true because my husband has cardiovascular disease. He has had several heart attacks, triple bypass surgery, and two stents and he can do more than what I can. He tires out easily but he also recovers easily. When we have been in situations where we are working together really hard – the same amount of work for the same amount of time – he recovers in a day and it can take me a week or longer to recover. He can go to bed, get a good nights sleep and be refreshed in the morning and start all over again. I can’t.
In the CFIDS Assoc. article, Dr. Suzanne Vernon talks about the different published versions of the ME/CFS criteria for diagnosis. The current “standard” criteria, Fukuda, doesn’t list post-exertional malaise as a required symptom where the Canadian criteria does.
Dr. Vernon states:
The authors of the Canadian clinical definition describe post-exertional malaise in detail, emphasizing the long recovery period ME/CFS patients require. They include a chart showing the response to exercise of healthy people compared to ME/CFS patients. Few diseases have the characteristic post-exertion “crash” that CFS does, making it a hallmark symptom.
Exercise is so hard on those of us with ME/CFS and it gets frustrating to hear all the time that we need to exercise to get better. It’s like a vicious circle – our bodies weaken and decondition even further because we can’t exercise. When we try to exercise, we get even sicker and can’t do anything else because we exercised. I have been trying to exercise on a regular basis and I feel like I don’t have energy to do anything else. It is so hard to know what is the right thing to do. We are told that we need to exercise and slowly build up. But this doesn’t stop the post-exertional malaise from setting in.
Here is some information Dr. Vernon wrote about a study that was done Dr. Mark VanNess and colleagues that was published in the Journal of Women’s Health. They determined that the post-exertional malaise was both real and incapacitating for the women with CFS whom they studied and that it was not attributed to fear of exercise or deconditioning:
This study included 25 women with CFS and 23 age-matched sedentary controls. There were no significant differences in the age, weight and height between CFS patients and controls. Each participated in an exercise test where they pedaled a bicycle ergometer until voluntary exhaustion and met criterion for maximal effort. For seven days following the exercise challenge, participants were asked to describe their symptoms in writing and to complete a survey called the Short Form-36 (SF-36) to measure self-perceived health status. Responses revealed that zero CFS patients recovered within 24 hours after the exercise challenge, compared to 85 percent of the sedentary controls. Forty-eight hours later, one CFS patient and the remaining controls reported complete recovery. Fifteen of the 25 CFS patients took more than five days to recover. The control subjects reported feeling energized and revitalized from the exercise. The CFS patients described extreme fatigue, pain, weakness and dizziness. The CFS patients reported lower SF-36 health status on physical and mental scales, but the mental assessments of emotion and mental health were not significantly different from controls. CFS subjects’ written descriptions indicated physiologic, rather than psychologic, effects of the exercise challenge. This post-exercise physiology is an indicator of the pathology of CFS and the authors suggest caution with exercise so that exercise benefits rather than harms.
Pay attention to that last sentence: “This post-exercise physiology is an indicator of the pathology of CFS and the authors suggest caution with exercise so that exercise benefits rather than harms.” I think this is where we as CFS patients struggle the most – we don’t know when enough is enough or when too much is too much. I think because so many of us with this disease are Type-A personalities it’s hard to do just a little and stop. We want to go full-force or nothing at all. Finding that balance with exercise is so hard, though. I have struggled with it for years and I am struggling with it right now.
If you are able to exercise with your ME/CFS, how long can you exercise without having a setback? How often do you try to exercise? Are you too afraid to try exercising? Post your thoughts in the comments.
Forgetful Girl says
I think that is one of the most frustrating things about CFS. I’ll have a good day and go out and do something and I will feel okay the next day and think ‘I’m getting better!’ and then BAM the next day I’ll be feeling like death! CFS really likes to joke around!
I have had CFS for approximately 20 years now. I remember that before I became sick with CFS I used to exercise 45 minutes to one hour a day and feel great. I kept at a size 4-6. I have been trying to walk on the tredmill, increasing the amount of time spent on it in very small increments for a few months now. I started out with only several minutes and worked up to 10 minutes, 4 days a week. Unfortunately, I keep having flare-ups and as a result I become afraid to exercise and will skip it for a week or so before trying again, only to have a flare-up again. Now at size 16, I really miss the real me at size 4-6 and often wonder if I will ever be able to lose the weight.
Nice of you to raise the issue of the difference between the two. I haven’t been diagnosed with CFS, only fibromyalgia, but I have to say that the fatigue is a lot more debilitating than any pain. I do HAVE to exercise every day or I’ll feel worse (stiff, crabby, muggy etc); of course most of the time I have to force myself to. I guess things could be worse for me. Nonetheless, life is a dance on a tightrope.
I am lying in bed, legs raised, in the middle of the day, no energy to do anything. Two days ago, the sun was shining, and I was out working in my beloved garden. Nothing much, just potting up a rosemary, potting on some geranium cuttings. Yesterday I felt a bit low on energy, light-headed. My husband asked me to stand and hold the wall of the garden shed he was putting up for me. Nothing else, just stand there. Today I cannot move. I am so frustrated, this has been going on for years. Two years ago I was on top of the world, taking a psychology course at university, singing with a choir. Then I caught a bad cold, and did not give in to it, just pushed on. My energy levels went down and down, and I had to withdraw from university. My energy levels have still not recovered. Can it really take 2 years to get over a cold?
I just read this article as I sit exhausted from a walk/run I took last night. I didn’t go a great distance – Only about a third of what I used to be able to easily do. And here I am soaked in brain fog in an achy body. I was a personal trainer and exercise was my life line. I totally agree that I am type-A and I have NO IDEA how much is too much with this condition. When I ran last night, it felt to amazing to actually be running I thought “Maybe I am done with this and it’s gone!” And then today I know that it isn’t true. What a catch twenty-two. I want to stay in shape and yet I cannot do it without paying a high price. Has anyone here been able to do yoga or pilates without experiencing this type of setback?
Good luck to us all. I believe we aren’t far from a remedy for this condidion!
My diagnosis is an immune dysfunction — IgG Subclass Deficiency. Seems very common in CFS/CFIDS. I get sick a lot.
I’m also medically disabled due to complicated eye issues that — in aggregate — cause pretty severe chronic pain.
I’m a former skier, cyclist, mountain biker, rollerblader, runner, and hiker.
Whatever this thing is … has hit me … very hard … over the last couple of years.
We moved into our dream house, not knowing that our bedroom was going to be IN our neighbors’ back yard, and that they had chronic barking dogs.
Nothing we could do convinced the neighbors to train their dogs. My sleep was disrupted for 2yrs, no matter where I slept, in our house. The pain went up, the pain MEDS went up, and a cycle of horrible health issues began — most of which I’m still battling.
I’m working with one of the top immunologic centers in the country, now — trying to figure out what happened, and what we can do about it.
My eye problems dictate that life indoors is very bad for me. My primary problem is near work, where my eyes have to focus on things that are close.
But this new problem is making it exceedingly difficult to get outside to exercise. Oh, I’m DOING it, but — as you all surely know — the price I pay, afterward, is huge.
So … shouldn’t be inside … having great difficulty being outside.
Good luck to you all ….. !
I’m new here-can someone shed some light on whether my symptoms are in fact CFS or something else?
A few years ago (maybe 2009) I noticed that just after exercise I would get really stiff muscles. Not the 24 hours thing-but a few minutes after. And I would be way more tired than was expected-given the amount of exercise I had done. And around that time I felt like I had been hit by a truck the morning after something strenous. I was stiff and really groggy when I woke up and it would take a few hours to feel mostly normal again.
Then about 2 years ago I would need to rest after walking about an hour in Mexico. This had never happened to me before and in fact the previous year I remember many days walking 6 or more hours in Mexico (same city so same elevation) without any issues.
Now for the past year all I want to do is to sleep. I sleep for 8-12 hours a night (I’m retired) and then as soon as I eat breakfast I want to sleep again. If I allow myself to sleep I still want to sleep the next day-it doesn’t help at all.
I was diagnosed a little over one year ago with low thyroid for which I”m taking med-but I still just want to sleep all the time. I have looked into depression as well-which is possible-but that does not explain the feelings I have after exercising. Sometimes after exercising I feel sleepy/groggy/uncoordinated and I am noticibly clumsy.
Does this sound like CFS to any of you?
Melanie Coffey says
I use to be in a water aerobic class untill 2012, I had did a hour class,i staeted noticing by the time i dressed and was leaving i was exshausted.Then i started having trouble with my siatica. i had to stop class. it took from nov. to march to get me ready to not go to class but walk in pool,45 min was what i did. still very tired. i would eat a good breakfast and eat yogutr or almonds before i would go in. then when i came out i would have some good snack. well same when i walked a lap at the park, Dr, response slow down cut time in half or less, I had to be out and only going 1 time a week. this week on mon, i did 10 min, i could not believe how tired. came home hit the couch. then while cooking i set on stool.I was suppose to go today Wed. but i had something i had to do on tue, so i walked through my errands and dinner with 2 friends like a turttle, so i got up and just could not go. The way you feel makes you not want to go. I dont know what to do anymore. All doctor will say is cut back. well not working. any suggestions? desperaate Oh and going everyday or 3 times a week regulary does not work. thanks
Someone with Asperger's and CFS/ME says
It should be hypothesized that CFS/ME is a systemic autoimmune disease, causing Chronic High-Level Endoplasmic Reticulum (ER) Stress on a cellular level, which means that ER stress is already abnormally high just like that, even without doing any form of exercises, but after slight exertion, ER stress may easily become that high that cells cannot survive anymore, and they will die, which may be experienced as post-exertional malaise. After massive cell death you may feel close to knocked-out, and you may need 24 hours or more in order to feel better again. But in case you are constantly ignoring the way your body works, you may soon come down with e.g. Post-Traumatic-Stress Disorder (PTSD), which is only one of the many comorbidities that CFS/ME has in store for you. When you have a systemic autoimmune disease, then you will have autoantibodies. And these autoantibodies have been found in CFS/ME!!! Lupus anticoagulant antibodies. Antibodies to β2GPI. Antibodies to cardiolipin. These are autoantibodies consistently found in APS, and more researchers should find out whether they can be found in CFS/ME too. At least one of these three have been found in CFS/ME, which is reason enough to hypothesize that APS can occur secondary to CFS/ME, in the same way as APS can occur secondary to SLE. Perhaps if all CFS/ME researchers in the world were to look harder for these autoantibodies in CFE/ME, then one day POST-EXERTIONAL MALAISE IN COMBINATION WITH ANTICARDIOLIPIN ANTIBODIES MAY BE REASON ENOUGH FOR A PHYSICIAN TO DIAGNOSE THE PATIENT WITH CFS/ME. Chances are that you will only find these autoantibodies, when the patient finds himself in a state of post-exertional malaise, and these autoantibodies may for the most part have disappeared after 24 hours, as soon as the patient feels somewhat better again. So researchers should catch the CFS/ME patient when these autoantibodies are expected to be at their highest level, and that may be during post-exertional malaise. And each and every one of these three autoantibodies should be tested regularly, at least three months apart.