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By Bruce Campbell

(From the series Treating ME/CFS and Fibromyalgia.)

 

Each person with Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia (FM) is different, so your self-management plan should fit your unique situation.

Here are some exercises to help you determine your individual circumstances.

 

The severity of two conditions varies greatly. Among people starting our program, activity level has commonly been reduced by 60% to 85%, so they are functioning at 15% to 40% of normal.

 

Some people are able to continue working, while others have their lives disrupted moderately and still others are housebound or even bedbound. Patterns of symptoms vary, too. Some people may have pain as their major complaint. For others the main problem is fatigue, brain fog or poor sleep.

 

You can get an overall idea of your ME/CFS or FM by placing yourself on the Rating Scale below, by answering the question “What is the highest level of functioning I can sustain without intensifying my symptoms?” If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms.

 

If you rate yourself at 30, you can be active about two hours a day without intensifying your symptoms. If your rating is lower, the activity level your body can tolerate currently is likely to be lower. If your rating is higher, you can be more active. In any case, your rating is just your starting point. This series and other resources on this site will describe many strategies for how to improve.

 

		ME/CFS & Fibromyalgia Rating Scale
100		Fully recovered.  Normal activity level with no symptoms.
90		Normal activity level with mild symptoms at times.
80		Near normal activity level with some symptoms.
70		Able to work full time but with difficulty.  Mostly mild symptoms.
60		Able to do about 6-7 hours of work a day.  Mostly mild to moderate symptoms.
50		Able to do about 4-5 hours a day of work or similar activity at home.  Daily rests required. Symptoms mostly moderate.
40		Able to leave house up to 5 days a week.  Moderate symptoms.  Physically active 3-4 hours a day.
30		Leave house several times a week.  Moderate to severe symptoms.  Active 2-3 hours a day.
20		Leave house once or twice a week.  Moderate to severe symptoms.
10		Leave house occasionally.  Severe symptoms.
0		Bedridden.  Unable to care for self.

 

 

Most people with ME/CFS or fibromyalgia struggle with one or more additional medical issues. Many have both conditions. Also, ME/CFS and fibromyalgia are often accompanied by one or more related conditions.

 

Some of the more common ones are listed alphabetically below. Most of these conditions are treatable. If one or more applies to you, you can reduce your overall symptom load by addressing them.

 

 

Both the severity of your ME/CFS and/or FM and the presence of additional medical conditions help shape your chances for improvement, as do several aspects of your overall life situation.

 

One is the amount of support you have in your life. Some people with ME/CFS and FM feel understood and supported by their family and/or other people in their lives, while others are challenged to have family understand them or may be alienated from their family.

Also, people with the two conditions are often forced to give up working and have trouble sustaining friendships, further reducing support.

 

A second important area is your finances. Some people with ME/CFS or fibromyalgia find their financial situations have changed little since they became ill. Perhaps they have a spouse’s income to fall back on, retire with a pension or have a mild case of ME/CFS or fibromyalgia and can continue to work.

Others, however, are less fortunate. They may live alone with little or no income and no financial cushion. Having adequate money reduces stress as well as providing access to medical help, medications, adequate food and housing.

 

A third aspect of life situation is stability. Some people with ME/CFS and FM are able to stay in the home they had when they got ill and their family situations are stable. Others have to deal with several to many changes: one or more moves and/or the loss of important people in their lives. Stability makes improvement easier.

 

 

Finally, your situation includes two other factors that affect your chances for improvement: your coping skills and your attitude. The key fact is that both of them can be changed. The articles on this site will show you how.

 

Research going back to the 1970’s has shown that people with chronic conditions can learn effective coping skills through brief self-management classes such as ours.

One such program is the Arthritis Self-Help course, which has been taken by hundreds of thousands of people. (I worked in the program at Stanford that developed this class.) Participants in the class have significantly reduced their pain and depression, and increased their activity level.

 

People in a program for heart disease reversed their symptoms using lifestyle changes such as a low-fat diet, exercise and group support. And people with diabetes have been able to reduce by half their risk of heart attacks and strokes by improving their regimen of blood testing and insulin injections.

 

Programs of this sort demonstrate that good coping skills can make a significant difference to quality of life and may even change the course of long-term conditions.

 

Attitude is also important to living well with long-term illness. The attitude that seems to help is one that is both realistic and hopeful. We call it acceptance with a fighting spirit. People with this attitude combine two seemingly contradictory ideas.

On the one hand, they accept that their lives have changed and that they have to live differently than before. At the same time, they have confidence that they can find things to make their lives better.

 

 

This site is based on a belief in the power of self-help, the conviction that people can change the effects and even the course of ME/CFS and fibromyalgia through their efforts. The articles in this series and elsewhere on the site contain many ideas for things you can do to feel better.

These strategies can help reduce pain and discomfort, bring greater stability, lessen suffering and may produce improvement, as we have seen many times among the thousands of people who have taken our classes.