Dr. Campbell* directs the nonprofit CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org) and online self-help discussion group courses, offering an exchange of practical advice such as the following.
Pacing means keeping your expended energy within the limits or ‘envelope’ that will avoid post-exertion exhaustion and payback pain. It is widely acknowledged as an effective way to live with CFS and FM, but many people find it difficult to do, Dr. Campbell has found. So he offers a series of articles that can help. In Part 1 of his advice on Aids to Pacing, he explains how to set safe personal activity goals, and here he reviews some simple but oh-so-helpful devices anyone can use to meet them.
AIDS TO PACING, PART 2
In addition to having personal rules and guidelines, you can use timers, pedometers and other devices to improve your success in pacing.
Timers are often used to enforce activity limits. For example, a person may have found that to avoid intensifying pain they have to limit chopping vegetables to 10 minutes followed by a five minute rest. Or they know that 15 minutes is the longest they can be on the computer without getting fatigued or brain fogged.
Using a kitchen timer or the timing function on a watch or cell phone, a person then sets the timer to sound at the end of the “safe” period. You can use this technique wherever you have limits: kitchen work, time on the computer, housecleaning, folding laundry, standing, talking on the phone, etc. (For a product idea, see the CDN Extra Large Big Digit Timer.)
A second tool for staying within activity limits is the pedometer or step counter. Our friend Dr. Charles Lapp [Director of the Hunter-Hopkins Center] believes that between 1,000 and 5,000 steps a day is a good range for many people with CFS and FM.
If someone takes fewer than 500 steps a day, Dr. Lapp usually suggests they gradually increase their steps. If someone is over 5,000 steps a day, Dr. Lapp finds they are usually too active and he advises them to cut back.
His guidelines imply that 10,000 steps a day, an exercise target often suggested for healthy people, will be inappropriate for most people with CFS and FM.
The first goal with a pedometer is to use it to determine your current activity level and its effects on your symptoms.
If you wear a pedometer for several days, you should get a good idea of how many steps you are now taking per day and can correlate that with your symptom level and compare it to Dr. Lapp’s guidelines.
A number of people in our program have told us that their initial finding was that they were too active. Some people are surprised at how many steps they take, even without an exercise program. One wrote, “What astonished me was that even on days when I didn’t go out [of the house], I was still recording 1,500 to 2,000 steps.”
Once you have found your current limits (which may be fewer steps than you normally take), you can use the pedometer to help you stay within them and escape the cycle of push and crash. Over time, it may be possible to expand the number of steps without increasing your symptoms.
There are two keys to safely increasing steps per day:
• The first is to increase gradually, which might mean no more than 5% at a time. (For example, from 1,000 to 1,050 steps per day.)
• The second is to increase only as tolerated by the body. This means that you monitor the consequences of any increase and return to your previous level if symptoms are intensified.
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Heart Rate Monitors
Another device that can help you stay within your limits is a heart rate monitor. You can use this device to avoid post-exertional malaise – the intensification of symptoms that results from doing too much. A heart monitor warns when you are over the anaerobic threshold (AT) or the heart rate beyond which we attempt to draw on energy reserves we don’t have.
You can find your AT through experimentation or by going through a test. The AT is often around about 60% of a person’s maximum heart rate, which is 220 minus your age. So, for a person who is 50 years old, AT would be calculated as (220 – 50) x .6 = 102 beats per minute.
Once you know your threshold, you can monitor yourself to discover when you are beyond your AT. Some people measure their heart rate by counting the beats in their wrist or neck, but other people use a heart rate monitor, an inexpensive machine available for $30 and up.
The alarm feature of a heart rate monitor tells you when you’re about to go outside your limits and alerts you to the need to take a break. One person says, “We set my monitor to alarm when I reached a bit below my anaerobic threshold. That audible heart rate alarm was the best training tool I could have had.”
Awareness of hitherto unknown limits can suggest how to change. One person in our program reported using a monitor showed her that just going up a flight of stairs pushed her heart rate beyond her threshold. Her solution was to take a rest break at the halfway point. Another person says that lifting her daughter used to push her over the edge. Her solution was to sit down and have the child climb into her lap.
The monitor can also educate others about limits and elicit their help. As one person said, “Using the monitor helped my family to understand and they helped me to stop when it went off.”
In summarizing the benefits of heart rate awareness, here are the thoughts of one person who has used a heart rate monitor:
“I’ve made a lot of progress in the past year, mostly thanks to heart rate monitoring, which trained me to reduce my activity to a level my body can handle. By forcing myself to stay within my limits, I have slowly achieved an increase in what I am able to do without going anaerobic.”
For more see the article “Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope.” (For a product idea, see the Omron HR-100C Heart Rate Monitor.)
Other Gadgets & Aids: Chairs, Stools, Scooters, Etc.
You may be able to get more done, reduce symptoms, or both by using other helpful gadgets and aids. These may include:
• Kitchen stool on rollers
• Plastic chair or bench in the shower
• Grab bars in the bath or shower
• Grabbers (for reaching high and low)
• Handicap parking tag.
One person in our program reported dramatic results from using a motorized cart or scooter for grocery shopping. Her tolerance for standing is low and she is vulnerable to the sensory input of stores, particularly noise and fluorescent light. Before starting to use the cart, she would be so tired from her weekly grocery shopping that she would lie down for two hours as soon as she returned from the store. Using the cart, she doesn’t need any rest at all after grocery shopping, freeing two hours for other activity.
“Finding Your Energy Envelope Part 1” (an introduction)
“Finding Your Energy Envelope Part 2” (refining your limits)
* Dr. Bruce Campbell, PhD, is a leading ME/CFS & FM educator, and is himself an ME/CFS patient who slowly achieved improved health more than a decade ago by researching and practicing an ongoing regimen of significant lifestyle changes. This article is reproduced with kind permission from his website (www.cfidsselfhelp.org), which offers a searchable library with scores of free articles on coping with ME/CFS and fibromyalgia, as well as low-cost online self help courses in moderated discussion group format.
Note: This information has not been evaluated by the FDA. It is general and is not intended to substitute for medical or other professional advice. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.