2. Your Unique Circumstances

Print

Share

Each person with CFS or fibromyalgia is different, so a self-management plan for CFS or FM has to be individualized to fit each person. You can begin to understand your unique situation by answering the following questions.

How Severe is Your CFS or FM?

The severity of CFS and FM varies greatly. People's activity level is commonly reduced by 50% to 75%, but the range is wide. 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, while for others the main problem is fatigue, brain fog or poor sleep.

Adding to the complexity, each person's illness may vary over time. Some symptoms may disappear, only to be replaced by new ones. Some people may have a relatively stable course, while others may fluctuate between times of severe symptoms and times of remission.

To get an idea of your version of CFS or FM, place yourself on the CFS & Fibromyalgia Rating Scale. 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. Most people in our program rate themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.

Your rating gives you an idea of the severity of your illness and the activity level your body can tolerate at the present time. For example, if you rate yourself at 35 (average for people in our program), you can be active about three 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.

Do You Have Other Medical Problems?

Living with CFS or fibromyalgia is often complicated by the presence of one or more additional medical issues. Many people have both CFS and FM. Also, CFS and fibromyalgia are often accompanied by one or more related conditions. In addition, people with CFS and FM often experience conditions common to aging, such as arthritis, back and spinal problems, and high blood pressure.

Here are some of the more common conditions that often accompany CFS and fibromyalgia, listed alphabetically. Most of these conditions are treatable. If one or more applies to you, you can reduce your overall symptom level by addressing them.

• Chemical sensitivity
• Depression
• Food and digestive issues: Candida (yeast infection), Celiac disease, lactose intolerance
• Gastroesophageal reflux disease (GERD)
• Irritable bladder syndrome (interstitial cystitis)
• Irritable bowel syndrome (IBS)
• Lupus
• Lyme disease
• Migraine headaches
• Myofascial pain syndrome (MPS)
• Orthostatic problems such as neurally mediated hypotension (NMH) or postural orthostatic tachycardia syndrome (POTS)
• Restless legs syndrome (RLS)
• Sleep apnea
• Temporomandibular joint disorder (TMJ)
• Thyroid problems

What is Your Life Situation?

Just as people with CFS and fibromyalgia differ in the severity of their illness and their additional medical conditions, so do they come from many different life situations. Some are young; many are middle-aged; some are older. Some are married, while others are single. Some are raising children, while others are empty-nesters. Some are in supportive relationships; others in conflicted ones. Some are financially secure, while others are struggling.

To understand your situation requires that you assess how your unique life situation affects your illness, especially in the areas of resources and relationships.

Some people with CFS or fibromyalgia find their financial situations have changed little since they became ill. Perhaps they have a mild case of CFS or fibromyalgia and can continue to work. Or maybe they have family members who work or they receive disability payments that replace some of their former income.

For others, however, financial pressures can be great. Some people live alone with little or no income and no financial cushion. Many are somewhere in between, stressed to some degree, but able to maintain a lifestyle more or less similar to the one they had before becoming ill.

Chronic illness changes relationships, creating new obligations and also new strains and frustrations. You may be single and struggle alone with your illness. Even if you live with a family, you may feel isolated and not understood. All family members are challenged to live differently; some may have to assume additional responsibilities. Relationships can be great sources of support, sources of stress or both.

Your challenges and the resources you have to deal with them will vary depending on your situation. We suggest that to understand your life situation you focus on your family circumstances (single or married, stage in life), your responsibilities (who is dependent on you: often children, sometimes parents, spouse, grandchildren or others), your finances and your sources of support (family, friends, church or other religious group, etc.).

How About Your Coping Skills and Attitude?

Your situation includes two other significant factors: your coping skills and attitude, both of which can be changed. You may not be able to alter the fact that you have CFS or fibromyalgia, but you can learn new and more effective ways to deal with them.

Research has shown that people with chronic conditions can learn effective coping skills through brief self-help classes such as ours. One such program is the Arthritis Self-Help course, which was developed at Stanford University in the late 1970's and has now been taken by over 350,000 people. Participants in the class have significantly reduced their pain and depression, and increased their activity level.

Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced comparable results. People who took a six-session course on coping with skin cancer showed an increase in life expectancy in comparison to other skin cancer patients. And people who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain.

Using lifestyle changes such as a low-fat diet, exercise and group support, the patients in Dean Ornish's program reversed symptoms of heart disease. In other research, 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.

People who improve the most in this type of program are those who believe in their ability to exercise some control over their illness. These people do not deny they are sick or hold unrealistic hopes for recovery, but they have confidence that they can find things to make their lives better. These classes 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 illness is a long-term condition. They don't expect a miracle cure to restore them to health. Rather, they acknowledge that their lives have changed and that they have to live differently than before. And they have the conviction that they can find ways to get better through their own efforts. (For some examples, see the Success Stories section of the Library.)

As with other life problems, learning to manage chronic illness involves adapting to new circumstances by making adjustments to daily habits and routines. The upcoming chapters contain many ideas for things you can do to feel better. These strategies are not aimed at curing CFS or fibromyalgia, but they can help improve quality of life and may help you to increase your functional level.

Self-management of long-term illness requires hard work and patience. I hope you can join the many people in our program who have found that they can affect their symptom level and quality of life significantly by accepting responsibility for those things under their control.