CFIDS/Fibromyalgia Toolkit

Chapter 1:  Understanding Your Situation

When you develop a chronic illness, you enter a confusing labyrinth in which all the rules of life seemed to have changed and there is no obvious way out.  If you are like many people with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) or fibromyalgia, most illnesses you had earlier in your life were temporary problems.  They presented you with brief interruptions of your life.  Though sometimes frightening or painful, they were usually conditions in which diagnosis and treatment were clear, and the outcome predictable.  After a few days or weeks of rest or treatment or both, your life resumed as it was before.  Called “acute,” short-term illnesses are temporary interruptions of our lives and usually resolve by medical treatment or by the passage of time.

Perhaps you thought of CFIDS or fibromyalgia in the same way when you first became ill, as a short-term illness that kept hanging on.  But at some point, you realized that you had entered a new realm: the world of chronic illness.  You were confronted by the fact that your illness was not a temporary interruption of your life, but a central fact around which your life revolved.  Instead of resuming your previous life after a brief interruption, you were faced with the prospect of adjusting to a different and much more limited life.  CFIDS and fibromyalgia touch every aspect of life: your ability to work, your relationships, your emotions, your dreams for the future, even our sense of who you are.

CFIDS and fibromyalgia, then, are long-term and comprehensive, affecting many aspects of our lives.  And the relation is two-way: our illnesses not only affect but also are affected by other parts of our lives.  (See “Chronic Illness” diagram.)  For example, there is an interaction between activity and illness.  Activity is limited by illness.  In fact, living with limits is a hallmark of chronic illness.  The limits, in turn, often lead to frustration, which may lead to doing too much.  The overactivity causes a higher level of symptoms and greater limits.  This cycle of “push and crash” and how to escape it will be discussed in Chapter 3, “The Energy Envelope,” and Chapter 5, “Pacing.”

The same pattern of interaction is true for other elements in the wheel shown in the diagram as well.  For example, illness is a source of stress, because being sick is tiring and worrisome.  Stress, in turn, can make symptoms worse.  Even moderate amounts of stress can greatly intensify symptoms, creating a feedback loop in which symptoms and our reaction to them intensify one another.  For a discussion of strategies for controlling stress, see Chapter 9, “Stress Management.”  Other interactions will be addressed as well.  For the relation of sleep, food and chronic illness, see Chapter 7, “Matching Strategy to Problem.”  Emotions are examined in Chapter 9, “Managing Emotions.”  Relationships are discussed in Chapter 10, “Improving Relationships.”  Self-esteem and thoughts are explored in Chapter 11, “Reducing Stress by Taming Thoughts.”

CFIDS and Fibromyalgia 

CFIDS and fibromyalgia are closely related medical conditions.  They are so similar in symptoms and in the effects they create that they are often thought to be different manifestations of the same condition.  Both are hidden illnesses, meaning both that patients often appear normal to others and that there is no physical marker for either illness.  Although both are now widely acknowledged to be real, physical illnesses, neither has a known cause or cure.  Given the absence of a cure, treatment for both focuses on controlling symptoms and improving quality of life.

CFIDS

CFIDS, also called CFS (Chronic Fatigue Syndrome), is a long-term disorder in which debilitating fatigue is usually the most prominent symptom.  Recent research suggests that there are probably 800,000 or more adults with CFIDS in the United States.¹ In addition, children also may suffer from CFIDS.  The illness affects all racial and economic groups, with probably about two-thirds of patients being women.

CFIDS is diagnosed in a two-step process.  First, various other illnesses that have similar symptoms are eliminated.  These may include thyroid problems, lupus, MS, and hepatitis.  Second, if other diseases have been excluded, an illness is considered to be CFIDS if two criteria are met: (a) the person has a debilitating fatigue that lasts at least several months and that forces a substantial reduction of activity and (b) she/he has four or more of the following eight other symptoms: impaired memory or concentration (mental confusion), sore throat, tender lymph nodes in the neck or armpit, muscle pain, joint pain, headaches of a new type, sleep that does not refresh and extreme fatigue following exertion. 

Fibromyalgia

Fibromyalgia (FM), also known as fibromyalgia syndrome (FMS), is a similar illness in which pain is usually the major symptom.  In fact, the word ‘fibromyalgia’ means pain in the soft (“fibrous”) tissues of the body: muscles, ligaments and tendons.  Fibromyalgia does not damage tissue and is not progressive.  There are probably close to four million people in the United States with fibromyalgia, about 90% of them women.²

Like CFIDS, fibromyalgia is diagnosed through identification of symptoms and exclusion of other possible causes.  There is no diagnostic marker for the illness in a patient’s blood or evidence of the illness that appears through X-rays or other testing.  The criteria for diagnosis include a history of at least several months of pain in many parts of the body (both left and right sides, above and below the waist) and pain in at least 11 of 18 “tender points” on the body.  Tender points are locations on the body that are painful when pressed.  Such points in fibromyalgia are found around the neck, shoulders, chest, elbows, lower back, hips and knees.

Other common symptoms include fatigue, sleeping problems, mental confusion, and strong emotions.  Studies suggest that it takes an average of five years after the first appearance of symptoms to get a diagnosis.

Understanding Your Unique Situation

In summary, CFIDS and fibromyalgia are serious, long-term illnesses that change every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are.  Just as they are comprehensive in their effects, so too are they tremendously varied.  Some people have relatively mild cases, while others may be bedridden.  Most people are in between.  Also, there are many different patterns of symptoms; each person's illness is different.  Adding to the complexity, each person’s illness may vary over time.  Some symptoms may disappear, only to be replaced by new ones.

People with our illnesses come from many different life situations as well.  Some have supportive relationships.  For others, relationships are a source of great stress.  People’s financial situations vary greatly, too.  Some patients continue to work or have family members who work, so their financial situations are largely unchanged.  For others, however, financial pressures can be overwhelming.

In the rest of this chapter, you’ll find a series of questions to help you understand some key aspects your unique situation: your illness and its severity, how you compare to others, your chances for improvement or recovery, the problems you have because of the illness, the things that make your situation worse and the things you already do to help yourself feel better.  By the end of the chapter, you should have a better understanding of how your illness affects your life and can set priorities for the problems you want to tackle first. 

How do I compare with other CFIDS and fibromyalgia patients? 

Even though the life circumstances of CFIDS and fibromyalgia patients may differ, patients share much in common.  When we ask people in our groups to describe the problems they face because of having the illness, there are usually many nods of recognition as people speak.  How many of the most common answers apply to you?

We also find, however, that there is a great variety of functional levels among CFIDS and fibromyalgia patients.  To get an idea of how your situation compares to others, place yourself on the CFIDS/Fibromyalgia rating scale.  Most students in our course have rated themselves between 20 and 45 at the start of the course, with the median being 30.  (Median means there are an equal number of people above and below.) 

Will I recover?  

There is so far no cure for CFIDS, but the outcome for many CFIDS patients is positive.  A quick summary would be: some recover, many improve.  It appears that some people with CFIDS make a complete or nearly complete recovery.  These people are able to resume their pre-illness lives with only a minor residue from the illness, such as vulnerability to high levels of stress or less physical stamina.  Another, larger group achieves notable improvement but less than full recovery.  Although there is a great deal of controversy on this issue, the total of these two groups might be something like half or perhaps somewhat more than half of all patients.  Unfortunately, others remain quite ill while a few worsen over time.  The course of CFIDS also varies.  Some PWCs (People with CFIDS) make relatively steady progress, some swing between periods of improvement and times of intense symptoms, while still others have a relatively stable level of symptoms, neither improving nor declining.

Fibromyalgia is usually viewed as a chronic illness with improvement possible but not recovery, at least at present.  Medications are usually suggested for the control of pain, though their effectiveness varies greatly from patient to patient.  Self-help strategies such as those we’ll explore can have a significant effect on quality of life.

In the CFIDS/Fibromyalgia Self-Help program, we try to distinguish between those things we have control over and those we don't.  In our view, whether we recover is out of our hands.  For now there is not thought to be a full recovery from fibromyalgia.  CFIDS patients can create conditions that make recovery possible but there is no assurance about outcome.  Usually, however, both fibromyalgia and CFIDS patients can affect symptom level and quality of life.  This effect is often dramatic, even if change is slow and setbacks are frequent.  Our program focuses not on final outcome but instead on what we can do to make our lives better.  For more on this topic, see the discussion of self-management in Chapter 2, “The Power of Self-Help” and the section on “What We Can Control and What We Can't” in Chapter 3, “The Energy Envelope.”

Why are some days worse than others? 

You start this book with a great deal of experience with your illness.  You have been living with it for some time, perhaps for years, so you have already learned a lot about how to manage it.  The book is intended to help you deepen your efforts at self-management.  Based on your knowledge of yourself as you begin the book, what are some of the things that you know make your symptoms worse? 

Are you worried, frustrated or depressed? 

Strong emotions like fear, anger, grief, and depression are normal reactions to having a chronic illness.  After all, serious illness brings great challenges.  It is isolating, creates tremendous uncertainty, brings loss and imposes limits.

Illness isolates people both physically, because we spend large amounts of time at home, often alone, and socially, because we feel different.  Because the prognosis for CFIDS and fibromyalgia is so varied, we face great uncertainty about the future.  We all ask: will I recover? if so, how much and when?  Lack of control often creates frustration and feeds a sense of helplessness.  CFIDS and fibromyalgia also mean loss: loss of the ability to work, of financial resources, of friends and of sometimes family.

Unfortunately, these emotional reactions to being seriously ill may be intensified by the particular illnesses we share, which seem to make our emotions stronger than before and harder to control.  This reaction seems to be part of the physical basis of the illnesses.  The effects may be especially strong in the early stages.  The strength of our emotions can create a vicious cycle.  Emotions can intensify our symptoms, which in turn may make us more worried and depressed, which further strengthens our symptoms.

If your emotions are particularly strong, it might be appropriate for you to seek treatment focused on your emotional reactions.  For further discussion, see Chapter 9, “Managing Emotions.”

What can I do to feel better?

Just as you already know a lot about what makes you feel worse, you probably also have ideas of what you can do to feel better and gain some control over your illness.  When we ask people at the beginning of class what they have found helpful, they often respond with answers like the following. How many apply to you?

In summary

CFIDS and fibromyalgia present great challenges.  Both illnesses affect every aspect of our lives, while medical help is usually quite limited.  Given these facts, a self-help approach may be useful.  (See detailed discussion in the next chapter.)  I hope this book can help you in your efforts to manage chronic illness.  It was written as a manual for personal change, intended to promote self-empowerment and to counteract a sense of victimhood.  You may want to read it through or look only at those parts that appeal to you.  In any case I encourage you to think about the practical applications of the ideas to your life.

Two Patients

To give you some idea of how our self-help course works and what can be achieved through self-management, we will follow two patients through this book.  One has fibromyalgia and the other has CFIDS.  Let me introduce them.

Mary's Experience of Fibromyalgia 

Mary was an administrative assistant at a high-tech firm before she became ill.  She learned of the self-help course through a friend who had taken it.  At that point Mary had been sick for over five years.  She was 43, had been married for 15 years, and had a 10-year-old daughter.  Even though she had continued to work for several years after becoming ill, she had finally quit a year before starting the self-help class.

She described her coming down with fibromyalgia as a slow descent.  It began with fatigue and body pain that gradually got stronger.  Also, she had difficulty concentrating.  At first, Mary just thought she was working too hard, that her 45-hour-a-week pace at work, in combination with being a wife and mother, was too much.  But even after taking a long-awaited vacation in Hawaii, she felt exhausted and in pain.  Mary was confused by her symptoms because she had always thought of herself as a healthy person.  She ate a balanced diet and exercised several times a week.  She had never been seriously ill.

Many times in the early years of the illness, she had to force herself out of the house in the morning because her body ached all over and she had great difficulty concentrating.  She found herself collapsing each day when she came home from work and over the weekend, so her life consisted of her job and rest.  Often, Mary worried that she would not recover enough over the weekend to return to work on Monday.

Mary felt guilty for not being able to do as much around the house as before and for not being able to help her daughter with homework.  In addition, Mary’s health created a lot of stress in her family.  Her husband resented the extra work he had to do at home, and her daughter was disappointed at not spending as much time with her mother as she was used to.

Mary saw a variety of doctors in the first few years she was sick, and finally got a diagnosis after three years.  Because of the illness, the quality of Mary’s work began to suffer and she decided after four years of being sick that she had to take some time off.  She took a leave of absence from work in the hope that time away from her job would allow her to get better.  Unfortunately staying at home did not help.  She rested a lot, but also out of guilt did more around the house than her body could tolerate.  In her first year off work, she did not improve.  She slept nine hours a night, and napped another six hours during the day.  Her body often ached terribly and she still had trouble concentrating for more than a few minutes at a time.

When she started the class, Mary was very worried.  She had been sick for five years and didn’t feel any better after taking a year off work than she had been before.  She wondered if she would ever recover.  Also, with the loss of her salary and the uncertainty about her recovery, Mary’s family was under a lot of pressure, both financial and psychological.  Mary was feeling increasingly isolated and discouraged.  In spite of giving up much that she valued, she was still very ill and worried that she would never get better.  She was uncertain about what she could do to gain some control over the illness and over her life.

Beth's Experience of CFIDS 

Beth is a 38-year-old accountant who has never been married.  About a year before entering the class, she came down with the flu.  She seemed to get better, but then her symptoms returned.  She had good days and bad, but most of the time she had a severe fatigue, a slight temperature, headaches, an aching body, and difficulty concentrating.

She continued to work for several months after becoming ill, but found herself less and less productive.  After five months, she asked for a leave of absence from her firm.  She thought that because she wasn’t improving even after cutting her time at work to 12 hours a week, she was likely to recover faster if she gave in to the disease and allowed her body a chance to rest.  She qualified for her company’s short-term disability insurance that would last two years.  But her decision to quit was still a difficult one.  She was single and had some savings, but was worried about her gamble to get better before her money ran out.

Beth had a sympathetic doctor, who had diagnosed her four months after she became sick.  Having a diagnosis relieved a great deal of anxiety and helped her come to her decision to quit working.  The doctor told her she had a good prognosis, since her symptoms were moderate, her onset sudden, and because she was planning a course of stress reduction and rest.

In the six months before she entered the class, Beth had improved slightly, even resuming exercise in a modest way.  But she was still symptomatic and very uncertain about what strategies could help speed up her improvement.  She was sleeping a lot more than before getting ill, and was resting each day.  She noticed she was much more emotional than before, which she found confusing.  She thought of herself as a logical person and was surprised at how upset she got at apparently small events.

Beth had always thought of herself as self-sufficient and independent, with a few close friends.  She had left her family in the Midwest when she moved to California, so had few family obligations or responsibilities.  She found it difficult to maintain friendships after becoming ill, and felt very isolated.  Her sense of independence was challenged by the illness.  There were some days she was confined to the house, unable to get to the grocery store.

Beth and Mary are representative of the people who have taken the CFIDS/Fibromyalgia Self-Help class.  We will follow them through them through the book.  To protect confidentiality, some identifying information has been changed and parts of the descriptions are composites of several students.  All information, however, is consistent with the experiences of people who have been in the program. 

Key Points