What Works for Managing CFIDS and Fibromyalgia

2: Conquering Helplessness

By Bruce Campbell

Chronic illness often produces a sense of helplessness. If you feel that you have lost control over your life, what can you do to regain control?

In our class, we suggest combining two approaches. The first focuses on identifying and reducing those things we do that make us feel worse. Using this approach, you ask: what can I avoid in order to suffer less? The second approach begins with the observation that some days are better than others and asks what can be done to make good days more frequent. Here’s what students in our groups say about each approach.

What Makes Symptoms Worse

Students mention a variety of factors that intensify their symptoms. These factors cluster in four areas.

1) Doing Too Much

The most commonly cited cause of strong symptoms is doing too much. Sometimes this is due to an uneven level of activity, being too active one day and experiencing high symptoms the next (dash and crash). Or intense symptoms may be caused by ignoring limits, pushing through to complete a job rather than listening to the body’s signals to stop.

Another commonly reported experience is engaging in an activity for too long. A person might be able to go shopping safely for half an hour, but experience strong symptoms if they stayed out longer. Also, patients often find that they have different limits for different activities. A person might be able to stand for half an hour without triggering an intensification of symptoms, but can spend only 15 minutes at a time on the computer, while being able to talk on the phone for an hour. The idea of limits applies to mental as well as physical activity. A positive response to doing too much is to live within energy envelope, which we also call pacing.

"Being too active (physically or mentally) exacerbates my condition, sometimes for days."

"I used to think I got tired because I had been too physically active, but I found that computer work, reading, watching TV, even listening to the radio can really wear me out, too."

2) Stress

The second most common reason for intensified symptoms is stress. Stress comes from many sources, including symptoms, uncertainty, financial pressures and strained relationships. And, making life more difficult, the way we respond may intensify stress; our emotions and thoughts can make our symptoms worse. Solutions include stress reduction practices like relaxation and avoidance of stressful situations and people.

"I experience stress from financial problems, stress from battling the insurance company, stress from friends and family who don’t understand my limitations or don’t see my illness as being real, stress from the roller coaster of chronic illness."

"I have many kinds of stress: financial problems, relationship problems, worries about the future, severe physical symptoms, and the normal speed bumps of life. All kinds of stress impacts me heavily. The unexpected crises especially have a huge impact."

"Higher emotions always increase my symptoms. I'm a high stress sort of person and the stronger my symptoms, the stronger my stress response. What a vicious cycle!"

3) Sensory Overload

Students also report that various forms of sensory overload make their symptoms worse. Overload can occur when sense information comes from more than one source at the same time. For example, it may be hard to listen to a conversation while music is playing. Or overload may be experienced in crowded noisy environments or places with confusing visual input, such as a busy store or an airport. Solutions include limiting sense input to one channel when possible, avoiding noisy environments and using of devices such as wheelchairs.

"Being with large groups of people is devastating physically for me, I think because it is just too much sensory input. For example, going to a movie on a crowded Friday night is much more difficult than going on weeknight when the theater is nearly empty."

4) Other Illnesses and Allergic Reactions

A cold, a flu or other illnesses may intensify symptoms. Also, patients often report having allergic reactions to food or chemicals. Solutions include allowing longer recuperation times when ill and avoiding substances that cause allergic responses.

"Secondary illnesses make my CFIDS symptoms significantly worse. I have found that I can avoid or at least minimize the flare-ups that follow secondary illness by giving myself extra rest for several days after a cold or flu appears to be over."

1) Pacing

The most common approach for gaining control is pacing, which means finding the appropriate activity level and the optimal amount of rest. Pacing techniques include being careful about overall activity level, living by a schedule of activity and rest, limiting the length of an activity, scheduling activities for "good" times of the day and avoiding "bad" times, saying "no" to some invitations, and limiting the length of time spent socializing.

Here are student descriptions of some of the most common pacing strategies.

Planned Rests

"Making sure I have a short break or two in the day where my body and mind are completely relaxed and at ease is really beneficial for increasing the amount of activity I can tolerate and how I feel."

"[Right after starting the class,] I decided to incorporate two scheduled rests into my day and the results have been incredible. My symptoms and pain have decreased and I feel more ‘in control’. My sleep has been more refreshing and I have had five ‘good days’ in a row. Prior to this course I had entered a frustrating cycle of good day followed by bad day without knowing why. The flow on effect of these scheduled rests has been to stop my downward spiral. Even my mood has improved."

Keeping Records

"When I took the class, I spent a lot of time analyzing my activities to help me define and refine my Energy Envelope. I determined the maximum amount of time I can spend in each type of activity I regularly do, without experiencing a significant increase in symptoms. Now it is easier to stay within those limits and keep my relapses to a minimum."

Routine

"Developing a routine and sticking to it have been helpful because the familiarity reduces the number of surprises and lowers the attention that I have to spend on unexpected happenings. If I always wash my face after brushing my teeth, then, when I'm done brushing my teeth, I don't have to think about what I'm going to do next."

Short Activity Periods

"Even on good days, I shouldn't expect to spend lengthy periods of time being active. Interspersing my activity with rests extends the total amount of time I have to be active, because I'm less likely to crash."

Listening to the Body

"On the occasions when I stop at the first warning sign of symptoms, I can head off a crash."

"If I try to do things in my own time, when I feel able and ready to do them, I find I can do more than I thought I could."

2) Managing Stress

Students report using a variety of techniques to control stress. These strategies fall into two broad categories: stress avoidance and stress reduction. The former means learning how stress affects you, then taking measures to avoid stressful circumstances where possible. Stress reduction includes different forms of relaxation, like meditation, listening to music, and taking hot baths. Students often employ several strategies. One, for example, said she uses a combination of massage, walking, playing the piano and dancing to help her reduce stress. Others report focusing on the positive in their life, such as by keeping a gratitude journal.

"I've tried to eliminate some of the obvious causes of stress in my life that I have the ability to eliminate: certain people, job pressure (through changing to a less stressful career), and extra responsibilities at home."

"I divide stressful situations into those I can anticipate and those I can’t. I’ve been able to modify some previously stressful situations so I do not feel so stressed. Also, I have eliminated some activities that caused stress, deciding that what I got out of it just wasn't enough to justify the increase in symptoms.

Sometimes, however, I find myself in a stressful situation I didn't anticipate, such as a conflict with a person, or staying at an event longer than I thought I would have to. When I realize I am in this type of predicament (and sometimes it takes a while to see it), I do what I can to get out of that situation as soon as possible. Most likely, I will feel symptoms brought on by the stress (body aches and fatigue) for the next day or two. So I adjust my schedule those days to accommodate my need for additional rest, rearranging appointments, rescheduling or canceling planned activities during this time. My relapses usually only last a day, two at the most."

3) Support

Support from others can be of two types: practical and emotional. Practical support means help with tasks such as housework or errands. Emotional support means feeling understood, accepted and connected to others. Support often comes from family, but it can also can be given by friends, fellow patients, therapists, and pets. Also, patients often report they find consolation in their faith.

"Feeling understood and cared for makes a huge difference in my state of mind, which therefore makes physical symptoms easier to bear."

"Emotional support is a wonderful tool. When someone takes the time to show they care and they understand what I have to go through, it just helps me so much."

"My being ill has created tensions in our family, because our finances are tighter and because others have to do more. I’ve made a conscious effort to repair the bonds with my husband and find that even holding hands while we watch television together gives us a sense of connection."

"Without my faith in God, a dear sister and another dear friend of the same faith, being sick would be a very lonely road."

Two approaches that may help when life feels out of control are to do less of what intensifies symptoms and to do more of what helps.

Coming next: What works for pacing.

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