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Chronic Fatigue Syndrome/ME
By Bruce Campbell, PhD* •
September 30, 2009
It’s not just physical activity that can drain energy needed to gain better control over symptoms, Dr. Campbell emphasizes, it’s also mental and social activity, and the drain of emotions and stress.
Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online self help courses in moderated discussion group format, and free follow-up programs & support.
Having a chronic illness can often feel like living on a roller coaster. You swing between intense symptoms and rest, in a frustrating cycle of push and crash.
When your symptoms are low, you push to get as much done as you can. But doing more than the body can tolerate, you intensify your symptoms and crash. You then rest to reduce symptoms, but then, if you feel frustrated and try to make up for lost time, you may plunge into another round of over-activity leading to another crash.
There is an alternative to this cycle of push and crash: living within limits. Your activity level and the way you live your life affect your symptoms. If you honor your limits, you can gain some control over your symptoms and bring predictability to your life. This article explains how to find your limits; the next article “Finding Your Energy Envelope” shows how to live within them.
The Energy Envelope
One way to explore the idea of limits is through the concept of the Energy Envelope. You can think of your situation in terms of three factors:
1. Available energy: The energy you have. It is limited, and is replenished by rest and food;
2. Expended energy: The energy you lose through physical, mental & emotional exertion; and
3. Symptoms: fatigue, brain fog, pain, and so on.
If you expend more energy than you have available, you will intensify your symptoms. This is called living outside the Energy Envelope. This approach commonly leads to the push and crash cycle described above.
An alternative is living inside the Energy Envelope.
• If you keep your expended energy within the limits of your available energy, you can gain some control over your symptoms.
• If you accept your limits (keeping your activity level within the limit of your available energy), you can reduce symptoms and the severity of relapses, and over time may be able to expand your limits.
This is an upward spiral.
The Fifty Percent Solution & the Bowl of Marbles
Let me suggest a couple of ideas you might use if you wanted to apply the concept of the Energy Envelope.
The first is called the fifty percent solution. Each day estimate how much you think you can accomplish. Then divide this in two and make it your goal to do this lesser amount. The unexpended energy is a gift of healing you are giving to your body.
The second idea is to imagine your available energy as a bowl of marbles. You have a limited number of marbles to use each day. The number may vary from day to day. Physical activity uses some, but mental and emotional activity do as well. With every activity, you take one or more marbles out of the bowl, remembering that stress is a big marble-user and so lessening stress will preserve your supply of marbles for other uses.
The overall idea in both the fifty percent solution and the bowl of marbles is that our limits force us to set priorities in order to control symptoms and bring stability to our lives. Both techniques are ways you can reframe your situation to give yourself permission to do less in order to improve quality of life.
Defining Your Limits
Another way to use the idea of the Energy Envelope is to develop a detailed description of your limits.
This can give you a thorough understanding of what you individually have to do to minimize symptoms and improve your quality of life. If you want to do this, I suggest you look at five different aspects of your life:
1. Your illness,
5. And stress.
(For more, see the discussion on how to complete the Energy Envelope Log in the "Energy Envelope" chapter of our course textbook. Scroll down)
Illness: The severity of your illness suggests your safe level of activity. To get an initial idea of a safe activity level, you can rate yourself in comparison to other patients on the CFS/Fibromyalgia Rating Scale .
Most of the students in our course have rated themselves between 25 and 45, but we have had people across almost the full range of the scale.
Activity: This factor refers to how much you can do without making yourself more symptomatic. You can divide this into three areas: physical, mental and social activity.
Physical activity means any activity involving physical exertion, including housework, shopping, standing, driving and exercise.
• To define your limits in this area, estimate how many hours a day in total you can spend in physical activity without intensifying your symptoms.
• Because the effects of exertion can be cumulative, you might ask yourself how many hours a day you could sustain over a week without worsening symptoms.
• Also, you can note whether some parts of the day are better than others.
• Finally, you can estimate how long you can do various specific activities, such as housework, shopping, driving, etc.
Mental activity means activities requiring concentration, like reading, working on the computer or balancing a checkbook. Three questions to ask in this area are:
• How many hours per day can I spend on mental activity?
• How long can I spend in a single session?
• What is my best time of day for mental work?
Some people, for example, find they can work at the computer for 15 minutes or half an hour without problem, but that they experience symptoms if they work longer. They may be more productive at some times of the day than at others. They may be able to avoid triggering brain fog or other symptoms if they have two or more brief sessions a day rather than one long one.
Social activity refers to the amount of time you spend interacting with other people. I suggest you think of social activity in two forms: in person and other (e.g., phone and email). Questions to ask yourself about each type include:
• How much time with people is safe for me in a day? In a week?
• Is the amount of time dependent on the specific people involved and the situation? (You may tolerate only a short time with some people, but feel relaxed around others.)
• For in-person meetings, you might also ask yourself whether the setting makes a difference. Meeting in a public place or with a large group may be stressful, but meeting privately or with a small group may be OK.
Rest: This factor refers to the quantity and quality of sleep at night and rest during the day. Questions you might ask about sleep include:
• How many hours of sleep do I need?
• What is the best time to go to bed and to get up?
• How refreshing is my sleep?
Daytime rest means lying down with eyes closed in a quiet environment. Questions here might include:
• How much total daytime rest do I need?
• How frequently should I rest?
Emotions: Strong emotions like fear, anger, grief and depression are normal reactions to having a chronic illness. This factor refers to the emotions we experience as part of being ill and also to the sensitivity we have to emotionally-charged events. Questions in this area include:
• What emotions are important in my life now and how intense are they?
• What is the effect of emotionally-charged events? (Events with strong emotion often trigger the release of adrenaline, which can be very taxing.)
Stress: This refers both to the sources of stress in our lives - and to our sensitivity to those stressors. In terms of sources, three are crucial: finances, relationships, and things.
• Finances can impose severe limits and be a major source of stress.
• Relationships can be sources of support and help, sources of strain or both.
Physical sensitivities refers to:
• Sense data (light and/or sound sensitivity, sensory overload),
• Seasons and the weather (intensification of symptoms at certain times of the year or with different weather conditions).
Your Energy Envelope is a list of your limits. Having an understanding of your envelope can help you to set priorities.
After completing the exercise of defining your envelope, you might decide that poor sleep was the crucial issue for you at this time. Or you might find that a stressful relationship needs attention. In any case, the idea is to understand your limits in detail, so you can control symptoms and decide where to focus your efforts for improvement.
“Living Within My Envelope: A How-To Story”
CFS patient JoWynn Johns describes how she reduced her symptoms and brought stability to her life by finding and honoring her body's limits.
“Finding Your Energy Envelope”
A two-part article on controlling symptoms by finding and honoring the body's limits.
* This article is reproduced here with the author’s kind permission from his CFIDS & Fibromyalgia Self-Help website (www.cfidsselfhelp.org). It is excerpted from Dr. Campbell’s publication, “Ten Keys to Successful Coping,” offered in the CFIDS & FM Self-Help library.
Note: This information is general, meant for support and educational purposes only, 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.
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| (1 existing comment)
Living Within One's Parameters
|Posted by: pearls
Oct 7, 2009
Was this review helpful?
This is a very helpful article to anyone with fibromyalgia or chronic fatigue syndrome. Another way of putting this is to learning to pace ourselves. I was a person who could push and push and push to get important things done. Fibromyalgia has changed all that for me, but I've learned to live with limits on my energy. I'll be the first to admit that retiring from my teaching job has been a major factor in my recovery. I'm at about a 45 on the scale at the end of the link in the article and while my fibromyalgia is a factor every day, all day long, I've learned to deal with it pretty effectively. Pacing has been a large part of it.
CFS/Fibromyalgia Rating Scale
|Posted by: harboreen
Dec 13, 2009
Very interesting and very helpful article! It has helped me to understand a few things I did not know about fibromyalgia. I research constantly yet never knew a couple things explained in this article. Thanks and keep the info updated!
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