Chronic Fatigue Syndrome / Myalgic Encephalopathy – General Treatment Guidelines

I suffer from CFS and about one year ago I started this program of doing things in intervals on my own initiative. I did small things that I didn’t like to do interspersed with things that I liked to do and would go back and forth between the two. I started very slowly at first where I could only do something for about 5 minutes, even less if I didn’t like it. I got sidetracked for quite awhile and it took awhile for me to set up the program again because I’d forgotten how I’d done it. I finally got it going again and I noticed I began to improve. This reminded me when I was young and training to be an athlete and once I plateaued that I needed to switch up the training routine so I added different things until I plateaued again. Well I am definitely getting better. Thankfully. I’m not where I used to be but I can finally see a light on the horizon to getting back to my old self or close to it. I probably have another year until I have my full confidence and abilities back. In the meantime I’m challenging myself to do things that bring me joy (despite what others may think about some of the activities I’m involved in). I recommend everyone incorporate exercise into your lives, even if it is just little bits of exercise. Do it enough and those little bits end up becoming bigger and bigger bits. Now I am doing low intensity, interval training with exercise and increasing things as I get stronger. Click here to learn more or read an excerpt below.

 

Physical Therapy and Exercise

Most CFS patients experience profound fatigue following even mild to modest exercise, and it is the primary factor in the low-activity levels in these patients. A recent study found, however, that 75% of patients who were able to engage in exercise, particularly aerobic exercise, reported improvement in fatigue, normal functioning, and fitness after a year. Another recent study demonstrated that light intensity interval training for CFS patients can be beneficial and slowly produced improvements in their exercise capacity and physical functioning without increased fatigue or other CFS symptoms (Gudrun, L., et al. Low intensity, interval training in women with chronic fatigue syndrome. Abstract, AACFS, 2003). Low intensity exercise was again found to increase physical capacity without worsening CFS/ME symptoms in a study of 14 women who completed a 10 week low intensive interval training program (Lennartsson C. IACFS 2007).

It is necessary to go slowly, however, to prevent relapse as some studies have shown too aggressive exercise to make some CFS patients worse (Whiteside, 2004; Paul, 1999; Blackwood, 1998). Patients should gradually increase activity level, keeping within limits and avoiding over-exertion. This is termed Activity Pacing. An incremental program of activity, beginning with as little as two minutes of moderate exercise a day, is suggested, although capacity varies greatly among CFS sufferers. The goal is to increase activity by about 20% every two to three weeks. Setbacks will occur, but patients should not become discouraged. Rather, they should experiment with various forms of physical activity that suit their available energy levels. Some patients report great benefits from Yoga or Tai chi, which combine exercise with meditation.

One of the best things you can do if you have fibromyalgia is exercise. Exercise relieves much of the pain fibromyalgia causes. Some people find that exercise makes all their pain go away. You will also feel better if you have some control over your own care and well-being. Physical activity prevents muscle atrophy, increases a sense of well-being, and, over time, reduces fatigue and pain itself. Many studies have indicated that exercise is the most effective component in managing fibromyalgia, and patients must expect to undergo a long-term exercise program. (“Effect of a Randomized, Controlled Trial of Exercise on Mood and Physical Function in Individuals With Fibromyalgia,” Gowans SE, et al, Arthritis Care Res, December 2001;45(6):519-529.)

  • Some patients with fibromyalgia avoid exercise for fear it will exacerbate their pain. However, according to studies, any pain caused by exercising subsides within 30 minutes. A very gradual incremental program of activity, beginning with mild exercise and building over time, is important to help patients comply with exercise.
  • Start your exercise program slowly, because at the beginning, exercise may make your pain worse. Begin with stretching exercises and gentle, low-impact activity, such as walking or bicycling. Some muscle soreness is normal when you’re starting to exercise, but sharp pain may be a sign that you have overworked your muscles. Patients who attempt strenuous exercise too early actually experience an increase in pain and are likely to become discouraged and quit. It should be noted that even walking two or three times a week is helpful. Some may need to start out with 5 minutes of exercise per week, and add 1 minute per week- in over half a year, you will be up to 30 minutes of exercise per day.
  • As you progress with exercise, it will become more comfortable for you. In order for exercise to help, you must do it regularly. The goal is to get started and keep going, to gain relief from pain and to improve sleep. Some tips may be helpful:
  • Walking: Start slowly by walking for 5 minutes the first day. The next day, add a minute to this total. Keep adding 1 or 2 minutes a day until you are walking for 60 minutes a day. When you reach this point, walk for at least 1 hour, 3 or 4 times a week. If you find yourself struggling as you’re working your way up to walking for 60 minutes, go back to a length of time that was comfortable for you and continue walking for this period of time for several days. Then continue to increase the minutes again until you reach the goal of 60 minutes. Try as many times as you need to reach the goal of walking for 60 minutes.
  • Walking/jogging: After you feel comfortable with walking 3 or 4 times a week, you can alternate walking with slow jogging. Walk for 2 blocks, then jog for 1 block, walk for 2 blocks, jog for 1 block, and so on. Do this as often as feels comfortable, and extend your exercise for longer periods if you feel comfortable.
  • Bicycling: Stationary bicycles (exercise bikes) offer the benefit of exercising indoors. Keep track of your mileage, or set a goal of exercising for 60 minutes.
  • Tai Chi and Yoga: Can be excellent choices for the FM patient as they are low impact and involve stretching and motion without excessive exhaustion.

The type of exercise you choose is up to you. The important thing is that you start exercising and keep doing it. Every patient must be prepared for relapse and setbacks, which are nearly universal, but this should not dissuade the patient from exercising. Patients should experiment with various forms of physical activity that can be tolerated using their available energy levels.

Aerobic and Strength Training Exercise. Strength training and regular low-impact aerobic exercise are very helpful for raising the pain threshold, although it may take months to perceive benefits. Desirable exercises are walking, swimming, and using stationary bikes. Swimming and water therapy, which eliminate weight-bearing, appear to be excellent choices for getting started.

Training Index. Some experts recommend the use of a training index for gauging progress and establishing a goal. This index is the product of three calculations:

  • The duration of exercise in minutes.
  • Number of days per week that the patient exercises.
  • The percentage of maximum heart rate. See Determining Percentage of Maximum Heart Rate below.

People just beginning an exercise program should start with an index of 10 to 25 and aim over time for at least 42. The following are some examples for determining these indexes using exercise goals.

  • To achieve an initial index of 15 the patient strives for the following exercise goals: A maximum heart rate percentage of 60% (.60) during exercise performed for 5 minutes 5 times a week. (the index is calculated in such a case by multiplying .60 x 5 x 5)
  • The later goal of an index of 42 could be achieved with the following a maximum heart rate percentage of 70% that occurs with 20-minute exercises three days a week (.70 x 20 x 3 = 42).

Stretching exercises should be performed for about 10 minutes before aerobic exercise, but they are not considered part of the total exercise time that the patient uses in calculating the index goal.

Determining Percentage of Maximum Heart Rate

  • Determine the maximum heart rate by subtracting one’s age from 220.
  • Determine the heart rate by measuring the pulse either at the carotid artery on the neck or on the inside of the wrist during a workout. It’s easiest to count pulse beats for 10 seconds, then multiply by six for the per-minute total.
  • Calculate the percentage of maximum heart rate, by dividing the exercise heart rate by the maximum heart rate and multiply by 100

Physical Therapy. The use of physical therapy may be very helpful. One study suggests that such therapy may reduce muscle overload, reduce fatigue from poor posture and positioning, and help condition weak muscles.

 

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