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.