Step 2: Understand Your Unique Situation
By Bruce Campbell
Each person's experience with ME/CFS or fibromyalgia is different, both medically and in other ways. Addressing your condition effectively depends on knowing your unique circumstances, so the second step in your self-management plan is to understand your individual situation.
Medical Circumstances
The severity of ME/CFS and fibromyalgia symptoms ranges widely. Some patients have relatively mild symptoms, while others may be bedridden and most fall on various points in between. There are many different patterns of symptoms. 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.
Finally, ME/CFS and fibromyalgia may be complicated by the presence of one or more other chronic illnesses. About two thirds of people diagnosed with ME/CFS also have fibromyalgia. In addition, people with either ME/CFS, fibromyalgia or both often have one or more other medical issues.
Other illnesses often found in people with ME/CFS include: irritable bowel syndrome (IBS), candida (yeast infection), food and chemical allergies, depression, and sleep disorders such as apnea and restless legs syndrome.
Conditions frequently occurring along with fibromyalgia include arthritis, lupus, depression, (IBS), gastroesophageal reflux disease (GERD), irritable bladder syndrome (interstitial cystitis), myofascial pain, chemical sensitivity, Lyme disease, sleep disorders such as apnea and restless legs syndrome, and thyroid problems.
The bottom line: each person's illness is different. To treat your illness effectively, you need to understand your unique medical situation. A hopeful note: While having to deal with multiple medical problems complicates the challenges of living with ME/CFS or fibromyalgia, treating the other conditions can help reduce the symptoms of ME/CFS and fibromyalgia.
One way to begin to understand your individual situation is to define the severity of your illness or illnesses. With that knowledge, you can determine how much activity your body can tolerate at the present time. To get an idea your functional level, place yourself on the ME/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 students in our course have rated themselves between 25 and 45, but we have had people across almost the full range of the scale.
Other ways to understand your medical situation include filling out the energy envelope form and keeping records of your symptoms and activity levels.
Resources and Support
Just as people with ME/CFS and fibromyalgia differ in their symptoms, in the severity of their condition and in the number of illnesses they have, so do they come from many different life situations. A majority are married, but many are single.
They are of many different ages and life circumstances. 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 patients find their financial situations have changed little since they became ill. Perhaps they have a mild case of ME/CFS or fibromyalgia and can continue to work. Or, maybe they have family members who work or they receive disability payments that replace their former income.
For others, however, financial pressures can be great, even overwhelming. 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. The limits imposed by illness may force you to give up some relationships. You may be single and struggle alone with your illness.
Even if you live with a family, you may feel isolated and not understood. Family members are challenged to live differently; some may have to assume additional responsibilities.
Coping Skills
In addition to your illness and your life circumstances, your unique situation includes two other significant factors: your coping skills and your attitude. The hopeful thing about both is that, unlike some other elements, they are not fixed. You may not be able to change the fact that you have ME/CFS or fibromyalgia, but you can learn new and more effective ways to deal with your illness.
One way to improve your coping skills is through self-help classes, such as our Introductory Self-Help Course. Research has proven that people with long-term illnesses can learn effective coping skills through brief self-help classes.
One well-researched 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 300,000 people. Patients taking the class have significantly reduced their pain and depression, and increased their activity level.
Research has shown that the patients who improve the most through the class 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.
Similar programs at UCLA and Harvard for skin cancer and chronic pain have produced comparable results. Patients 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 patients who took a course on combating chronic pain reduced their visits to doctors, their levels of anxiety and depression, and their experience of pain.
All these programs are based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. They demonstrate that the use of good coping skills can make a significant difference to quality of life.
Attitude: Acceptance and Hope
Lastly, your ability to live well with long-term illness will depend on your attitude. The patients we have known who have done well have all had a realistic, yet positive attitude that combined two apparently contradictory ideas: acceptance and hope.
Acceptance means they acknowledged that they had a long-term condition that imposed limits and required that they adapt. They did not try to ignore their illness, nor did they expect it to disappear. They recognized that they had to adjust to ongoing symptoms and limitations, but their acceptance was not the same as resignation.
On the contrary, they had a determination to improve and a confidence that they could find ways to feel better, even if they were not able to restore their old life. (For some examples, see Dean Anderson's account of his experience with CFS and other articles in our Success Stories series.)
We share their view, believing that it is realistic to think that ME/CFS and fibromyalgia patients can find things to help them feel better. Medications and self-management strategies may not cure ME/CFS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering.
We call this approach realistic hope. Even if you aren't able to restore your old life or to live the life you had expected, you can adapt to the limits imposed by your illness and find meaning by living the best life possible under the circumstances.
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