Pedometers: A Tool for Pacing
By Bruce Campbell
[Note: Last updated August 24, 2018]
The key to successful management of ME/CFS and fibromyalgia is pacing, which has three parts:
- Finding your limits or energy envelope
- Adjusting to your limits to minimize symptoms and increase control
- Expanding limits safely to do more without increasing symptoms
This article discusses how to use a pedometer to help you with all three parts of pacing as they apply to physical activity. Using this inexpensive device to count your steps gives you a way to:
- Define your current activity limit
- Help you stay within that limit
- Guide you in safely expanding your limit
Guidelines for Steps Per Day
To get an idea of safe limits on steps per day for people with ME/CFS and fibromyalgia, we discussed pedometers with Dr. Charles Lapp, director emeritus of the Hunter-Hopkins Center in Charlotte.
Dr. Lapp began treating ME/CFS and FM patients in 1985 and the clinic he founded is one of the few medical practices in the United States to specialize in ME/CFS and FM. The clinic recommends that its patients use pedometers.
Dr. Lapp believes that between 1,000 and 5,000 steps a day is a good range for many people with ME/CFS and fibromyalgia, although even less may be necessary for those with more severe forms. If one of his patients had fewer than 500 steps a day, Dr. Lapp usually suggested they gradually increase the number of steps they take.
If someone was over 5,000 steps a day, Dr. Lapp found they were usually too active and he advised them to cut back. Dr. Lapp's guidelines imply that 10,000 steps a day, an exercise target often suggested for healthy people, will be inappropriate for most people with ME/CFS and FM.
Finding Your Envelope
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.
It is quite common for people to find that they are too active. The number of steps they take per day puts them “outside the energy envelope.” One person in our program reported on her use of a pedometer to find her limits, "If I had a high number [of steps], it matched the overexertion levels and how awful I felt that night and the next few days."
She discovered that initially she could walk only a few hundred steps a day without intensifying her symptoms, though she was gradually able to expand that to about 2,000.
Another person wrote that her ME/CFS/FM doctor “recommended that I reduce my steps well below 5,000 per day - reducing them until I reached a relatively symptom-free stage. It had never before occurred to me to reduce my steps. I got to less than 2,000 per day before I began to improve.”
Wearing a pedometer helps some people realize that they are more active than they thought, 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. No wonder I get tired sometimes and don't think that I have done anything during the day to justify the fatigue! I had no idea how much walking I did"
Staying Inside Your Envelope
Once you have found your current limits, you can use the pedometer to help you stay within them, keeping a consistent level of activity day to day rather than cycling between push and crash (overdoing your activity, experiencing a spike in symptoms, forcing you to rest).
One person in our program says, "There are many days I feel I can do more, but if I do, I crash and burn. [My pedometer] is a wonderful device for reminding me how much I have done and how many steps I have left for that day."
And, as Dr. Lapp reminded me, you can also use your pedometer to help you set limits with others. For example, if you are shopping with a friend and notice that your pedometer shows you are close to your step limit, you can say something like “I’m almost at my step limit for today, so I need to sit down for a while and then head right home.”
Extending Your Limits
Over time, you may be able to proceed to the third part of pacing: expanding the envelope. In the area of physical activity, that means increasing the number of steps you can take without increasing your symptoms. There are two keys to safely increasing your steps per day.
The first is to increase gradually, which usually means no more than 5% at a time and often less than that. (For example, from 1,000 to at most 1,050 steps per day.)
You can read here about one person in our program who used that approach to extend her daily walking limit very gradually from about 100 yards to four miles. When experimenting with greater distances, she began by limiting her extensions to 10 or 20 feet.
The second key to safe expansion of activity 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.
People in our program have suggested two additional strategies that may be helpful if you want to increase the number of steps you do in a day. The first is to be attentive to the pace or intensity of their walking. One wrote that she had learned to "stroll" rather than "march."
One way to determine an appropriate intensity is by measuring your heart rate. See the article Pacing By Numbers: Using Your Heart Rate to Stay Within the Energy Envelope.
A second strategy is to combine walking and rest. One person says that "it took many, many months of walking very short distances before I could do a great deal. I used a folding stool and/or sat at intervals on benches. This care prevented me from becoming symptomatic."
Another, who had been advised to walk 30 minutes per day, broke up her walking into two or three periods of 10 to 15 minutes each.
There may be a limit on the number of steps you can take without increasing symptoms. One person who had gradually increased her steps per day from 500 to 2,000, says "I am working on increasing it, but I will be happy with [2,000] if that's not possible."
Cautions & Summary of Benefits
Although pedometers can be very useful, they cannot give you a complete picture of your limits. Activity includes mental work and socializing as well as physical activity. And we also have limits in other areas such as our ability to tolerate sensory input and stress, and how we handle emotions.
(For more on these other limits, see the article titled The Little Envelopes and the success story How I Manage My Many Energy Envelopes.)
It should also be said that symptoms are affected by other factors such as sleep, weather, food, and medical conditions you may have in addition to ME/CFS and FM.
That said, a pedometer can be a valuable tool. Summarizing the benefits, one person wrote:
"Using the pedometer really helps me stay within my [energy] envelope. The pedometer gives me a measurable way of checking my progress, increasing my activity level in a manageable way, and --most importantly-- avoiding doing too much."
(For an overview of pacing, see Pacing FAQ and the Pacing Tutorial.)
Note: Article reviewed by Dr. Lapp.