Dr. Cheney has always said not to do aerobic exercise with CFS, but you have to do something so your muscles don't turn to jelly. I do stretches and resistance exercises and have been told that I "can't have CFS, because I have not lost muscle strength" (which is another of those misconceptions based on seeing only patients who truly are deconditioned because they define exercise only as aerobic, which causes problems, and therefore don't do anything). I can mosey, but I cannot walk far at a normal pace.
Here are three experts discussing the subject: (and, these three doctors confirm what was recently shown by researchers, that CFS patients were actually more active than average and therefore need "permission" to do less, rather than the prevailing non-specialist assumption that we're lazy and need to be forced to do more).
Doc to Doc:
The "Skinny"on Exercise and CFS
Exercise can be a tricky topic in the care of patients with CFS. On the one hand, exercise can lessen pain, improve sleep and increase energy levels. Deconditioning due to lack of activity only serves to undermine an already challenged body. On the other hand, one of the classifying symptoms of CFS is postexertional malaise, with significant exacerbation of symptoms following heightened activity. At times, these increased symptom levels can last for days following exertion. Not surprisingly, many people with CFS express extreme concern at the suggestion of exercise as a treatment for the illness, fearing their physician will simply push them to join a gym and "hit the treadmill." Unfortunately, some medical professionals-not fully understanding the complexities-take that misguided approach. With such concern and apparent misunderstanding on both sides of the examination table, three CFS-experienced clinicians share some practical advice on approaching exercise appropriately and effectively.
What role does exercise play in your treatment for CFS?
Lucinda Bateman, MD, Fatigue Consultation, Clinic, Salt Lake City, UT
Exercise plays a critical role in my practice because it is such a double-edged sword-beneficial but tricky-and must be constantly addressed. During almost every visit, I ask patients what they are doing to maintain their physical strength and conditioning. That gets us talking.
Nancy Klimas, MD, University of Miami, School of Medicine, Miami, FL
Exercise is important, both in the day-today management of symptoms and in the overall ability to improve over time.
Susan Levine, MD, Internist and, Immunologist, New York, NY
The role exercise plays in my treatment of CFS patients depends mainly on the following factors: (1) the severity of their fatigability based on a subjective assessment of how long they can function at a particular task, such as grocery shopping or walking, before pushing the limit of overexertion; (2) motivation and accessibility factors, such as availability of a gym, a pool, stationary equipment or even an exercise buddy; and (3) whether they have associated disorders that might mitigate the benefits of exercise (such as cardiac problems).
Do you define exercise differently when treating CFS and, if so, how?
Bateman: We often think of exercise only as aerobic activity (walking, running, swimming, hiking, etc). I try to redefine exercise into three components: stretching, strengthening and aerobic activity. That gives all CFS patients something they can work on.
Levine: Exercise is different for patients with CFS. I would rather even use the word "movement" or name the specific activity that I want them to perform (such as walking or swimming). Movement promotes endorphin release and blood circulation, improves balance and increases strength. But it should be done cautiously, and the duration of the activity should be kept at a minimum level, with only small increments of activity added every six to eight weeks.
What concern or resistance have you experienced from CFS patients when it comes to exercise? How do you address these concerns?
Bateman: Resistance comes from negative experiences with exercise itself and with physicians who don't seem to understand what the person is going through. My patients and I spend time every visit talking about their pain, fatigue, sleep, mood, function and payback symptoms-addressing exercise in the context of that communication. I think everyone understands that their bodies become weaker without exercise, so it's easy for them to imagine how that might compound their CFS. I encourage patients to "start low and go slow," reminding them that they have all the time in the world to become stronger but can "crash" very quickly. I counsel them to do the amount of stretching, strengthening and light activity that will not cause any rebound symptoms the following day. We also discuss ways to do exercise lying down, seated or in water to avoid orthostatic intolerance.
Klimas: Most CFS patients will have concerns, and some are quite fearful of an exercise program. This is because all CFS patients will relapse with overexertion, and most are in the habit of pushing themselves over that invisible line of "too much." But I believe patients who understand the reason they are so exercise intolerant are able to stick to a program that doesn't go over that invisible line.
Levine: Exercise is often a dirty word to the CFS patient. But if I phrase it in a way that sets limits on what I expect, they are usually comfortable. For instance, I define regular exercise for CFS patients, initially, as three to five minutes daily of mild aerobic activity, such as walking on a flat treadmill or walking around the block. There are also ways to make exercise less threatening for the patient. Taking a small pet on a walk or going out with a spouse for a short stroll can be beneficial and enjoyable. The key is a regular program, no matter how short a duration, at about the same time every day.
What do you see as the greatest exercise-related risk for people with CFS?
Bateman: The greatest risk is a patient getting discouraged and falling away from all forms of exercise. I also think some patients can develop more chronic pain or other symptoms from forcing exercise when they shouldn't. I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.
Klimas: I have come to recognize three basic risks. First, patients who push too hard every day never have a good day and are not able to improve because they constantly cross the line of overexertion. By backing off a bit and working up gradually, they will find that their overall exercise tolerance improves. Second, patients who have been burned by bad exercise experiences can become afraid to try and, therefore, never gain the benefit of an effective program. They don't even know where their line of tolerance might be. Third (and most common), patients who are clearly benefiting from a program, then relapse (no matter what the cause) are sometimes dramatically discouraged. When one of those fluke relapses hits them, they are emotionally crushed and struggle to find the motivation to start exercising again. The good news is that they don't lose all of the ground they so painstakingly won. But they are temporarily set back in their training program. Encouragement is key.
Levine: I think the greatest risk is a patient performing too much exercise on a day when he or she may feel better. Patients have to be told not to exceed their limits and to keep short diaries of their progress.
For more information on CFS symptoms, treatment and coping visit www.cfids.org
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