Better Living Through Technology: Devices as Aids to Pacing
By Bruce Campbell
One of the biggest challenges in ME/CFS and fibro is learning to stay within the limits imposed by illness. Your effort to stay inside your Energy Envelope, which we call pacing, can be aided by the use of devices of various kinds, such as those described below.
1) Pedometers
A pedometer or step counter and a heart rate monitor (described in the next section) can be particularly helpful in the two crucial pacing tasks of finding and adapting to your limits.
First, you can use a pedometer or the step counting function on your Fitbit or other activity tracker to determine your current activity level, measured as the number of steps you take in a day.
If you record your steps 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. Many people find that their current activity level intensifies their symptoms and that they need to take fewer steps per day to control their symptoms.
Once you have found your current limits, you can use the pedometer to help you stay within them, limiting your steps per day to a safe number. Over time, it is often possible to expand the number of steps per day without increasing symptoms, if done gradually in small steps as described in this success story.
Summarizing the benefits of step tracking, 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 more on step counters, see the article Pedometers: A Tool for Pacing.
2) Heart Rate Monitors
For many people with ME/CFS or fibro, especially those with more severe forms, keeping their heart rate below a limit called the anaerobic threshold (AT) can be crucial.
When their heart rate gets above the threshold, their symptoms are intensified. But when they succeed in keeping their rate below the threshold, they gain control of their symptoms and can safely increase their activity level.
You can determine your AT using one of the approaches described in the article Pacing by Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope. Knowing your AT, you can stay within it by tracking your heart rate using a device called a heart rate monitor.
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. As 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."
Writing about the benefits of tracking heart rate, another person in our program wrote, "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 [safely]."
3) CPAP Machines
Sleep disorders are very common with ME/CFS and FM, affecting a majority of people with the two conditions, perhaps as many as 80%. Treating them can have a dramatic effect on symptoms.
Perhaps the most common sleep disorder is sleep apnea. The term means “absence of breathing” and occurs when a person's airway becomes blocked during sleep and he or she stops breathing. An episode can last from a few seconds to a few minutes. The person then awakens, gasps for air and falls asleep again, usually without being aware of the problem. The cycle can occur many times a night, leaving the person exhausted in the morning.
A common treatment for sleep apnea is the use of a CPAP (continuous positive airway pressure) machine. The patient wears a mask through which a compressor delivers a continuous stream of air, keeping the airway open and thus allowing uninterrupted sleep. Use of a CPAP machine can eliminate 90% to 100% of a person's sleep apnea.
4) Timers
Timers are great pacing tools. You can use them both to determine your envelope and to help you stay within it.
First, timers can help you find your limits: how long you can do various activities without increasing your symptoms. To do this, you can experiment with different lengths of activity, timing each. Your limit may be different from one activity to another. For example, you may be able to work in the kitchen for 15 minutes at a time, but that much time vacuuming might send you to the couch.
Timers are especially useful in the second step of pacing, helping you to enforce your limits. For example, if you’ve found that more than 20 minutes on the computer during one session makes your symptoms worse, you can set your timer for 17 or 18 minutes when you start a session. When the timer goes off, you still have a few minutes to finish up what you’re working on before taking a break.
Some people use timers to set limits on the length of visits with other people. One person in our program says, “I use the timer on my phone and some gentle words to end conversations. I tell people, ‘I can visit for 15 minutes’. When my timer goes off, I start to say my good byes. It’s my best pacing strategy.”
5) Reminders
Another tool for getting things done is to use reminders, which can take a variety of forms. Some people use lists posted with a magnet on the refrigerator or on the bathroom mirror. They give a schedule of tasks for the day, thus putting a limit on activity.
Reminders can also be used as part of learning assertiveness. One person, wanting to strengthen her resolve to set limits with others, posted notes all over her house saying, "I'd love to but I just can't." The notes reminded her what to say when people make requests. She says "seeing the notes so often ensures I remember to use this answer without feelings of guilt."
Others use smart phone reminder lists. One person says, “I set my phone to remind me of things I want to do at certain dates and times. I set items up while I’m thinking of them and then I don’t have to think about it again. My phone will remind me at the appropriate time.”
6) Mobility Aids: Scooters, Wheelchairs, Stools, Chairs, Etc.
If you have a moderate to severe case of CFS or FM, have limited tolerance for standing or are sensitive to sensory input may find shopping easier if you use a scooter or wheelchair. They can make it possible to do things you might otherwise not be able to do. As one person in our program said, “With my mobility scooter, I can now say ‘yes’ to outings.”
One use of scooters in everyday life is in shopping. Many large stores have such devices, which they make available for free. And they can make a big difference. One person said that prior to using a 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. With the cart, she didn't need any rest after grocery shopping.
Various mobility helpers can be used around the house. Some people with ME/CFS or fibro have trouble standing for extended lengths of time. This may be due to the severity of their condition or to their having orthostatic problems such as POTS (Postural Orthostatic Tachycardia Syndrome) or other health issue.
In any case, one solution if you can stand for only a short time might be to sit down on a plastic chair while showering. You can also use sitting down as a strategy in the kitchen, working while sitting on a stool with rollers and picking things up using a grabber.
Also, people with balance problems may be helped by using a cane or walker. Lastly, to reduce walking distance from parking lot to store, some people get a handicap placard. Other solutions include using a scooter, as mentioned earlier; finding places to sit down in stores; and, for multi-destination outings, lying down in the car between errands.
7) Heat, Cold, and Other Non-Drug Forms of Pain Relief
Heat, cold, massage, and electrotherapy can all be used for temporary relief of pain. Heat is best utilized for reducing pain that results from muscle tension and inactivity. The warmth increases blood flow and thereby produces some relaxation, reducing pain and stiffness. For localized pain, heating pads or hot packs are used frequently. For overall relief, people often use warm baths, soaks in a hot tub or lying on an electric mattress pad.
Cold treatments decrease inflammation by reducing blood flow to an area. They also may numb the areas that are sending pain signals. You might use gel packs, ice packs or bags of frozen vegetables. With both heat and cold, treatment usually last for no more than 15 or 20 minutes at a time.
Massage of painful areas can also provide temporary relief from pain. Like heat, massage increases blood flow and can also relieve spasms. Also, various devices use electric current to stimulate nerves.
For more, see the article Non-Drug Treatments for Pain: Nine Strategies.
8) Online Shopping, Bill Pay, Apps & Entertainment
Many people in our program report using a computer to do online shopping and for bill paying. One said, “I order groceries online and it’s a HUGE help. I just drive to the grocery store and someone loads up my car.” Another said, “I love having heavy items like pet food delivered to my door.”
Others report using their computer as an “at home entertainment center” for playing solitaire, reading, as well as connecting with others.
9) Headphones
The last item concerns a very common problem for people with CFS and fibro: sensory overload. This term refers to the worsening of symptoms that occurs when a person receives more sensory information than he or she can process.
We know it’s common because our article about it is one of the most popular out of several hundred articles on this website and people in our program usually rate sensory overload in the top four causes of increased symptoms, along with overdoing, poor sleep, and stress.
Noise that is too load or noise coming from multiple sources is one cause of sensory overload. Some people bothered by noise use noise-canceling headphones to protect themselves or, if they are bothered by sound coming from their spouse’s use of the radio or TV, get headphones the spouse can use. Either way, they protect themselves from noise.
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