The CFIDS & Fibromyalgia Self-Help Book

Chapter 9: Stress Management

Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS or fibromyalgia. First, chronic illness adds new stressors to the common challenges of everyday life. The new stresses include the discomfort of symptoms, isolation, financial pressure, strained relationships and uncertainty about the future. Second, CFIDS and fibromyalgia are very stress-sensitive illnesses, which seem to reset our “stress thermostat” so that the effects of a given level of stress are greater than they would be for a healthy person. In summary, not only are your stresses multiplied because you are ill, you are more vulnerable to the effects of stress. All this makes stress management a central challenge to living successfully with chronic illness.

Like other aspects of our illnesses, stress is a part of the illness that can be managed. It is an area in which there can be a big payoff for your efforts, because the effect of stress on symptoms and on quality of life is so great. By using stress management techniques such as those described below, you can learn how to interrupt the cycle in which symptoms and stress reinforce one another.

In responding to stress, there are two major approaches that may be helpful: stress reduction and stress avoidance. The first involves retraining yourself, learning how to respond differently to stressors so that they do not have the same effect as in the past. The second approach is preventive, taking measures to avoid stressful circumstances.

Because stress is so pervasive in chronic illness, I recommend you consider using a variety of techniques to combat it. Here’s how three students in our program responded when asked how they control stress.

I do a variety of things to manage stress, such as deep breathing, listening to relaxation tapes, getting regular massages, walking with my dog, and writing in my journal.

The ways I try to handle stress are: meditating daily, scheduling a regular time in bed each night, keeping our home an emotionally welcoming place for my husband, engaging in pleasurable activities, and avoiding unwanted situations which will drain my energy.

For stress reduction I use stretching and yoga; relaxing activities like time in our hot-tub or in the swing in the back yard; spiritually enhancing activities such as prayer and Bible study; and fun activities both mental or physical, like reading, movies, playing with the grandchildren, playing with the dog, and spending quality time with my husband.

Often, how we view and react to a stressor determines how much stress we experience. For example, if you worry in response to an increase in symptoms, you may tense your muscles. Muscle tension can create pain, draining energy and causing fatigue. By learning to relax, you can lessen muscle tension and ease symptoms. This is one example of how to reduce the impact of stressors by changing your response. The discussion below describes seven different ways to reduce stress.

When we become stressed in the face of challenge, we often respond with a fight-or-flight reaction. Adrenaline flows and we feel charged up. If the challenge is short-lived, the initial reaction is followed by relaxation. If, however, you feel yourself to be under constant threat, as you may if you are always in pain, your body stays in a state of tension. Relaxation counteracts the effects of the fight-or-flight response.

Relaxation means letting go. Physically, it involves releasing muscle tension and breathing more slowly and regularly. Emotionally, it consists of nurturing a sense of equanimity. Mentally, it means observing and releasing worry-filled thoughts.

Physically relaxing activities counteract both the physical and the emotional aspects of stress. Through relaxation, you can reduce muscle tension and anxiety. Relaxation is also very helpful for pain control. Combining rest with a relaxation procedure or meditation can be an even more effective means of stress reduction.

Step-by-step instructions for several relaxation techniques are given at the end of the chapter. But other, less formal approaches can help, too. These include exercise, attentiveness to breathing, baths and hot tubs, massage and acupuncture, rest and listening to relaxation tapes.

For stress reduction I use deep relaxation through therapeutic massage and healing bodywork, long soaks in a hot tub or steam room, exercise/movement such as long, deep yoga stretches, and tai chi. Sometimes something more vigorous for a short period of time works best, like a brisk walk or jumping on my mini-trampoline.

I find that using slow-breathing techniques helps reduce my stress. If I find that I am running late for an appointment, I make myself slow down and take deep breaths to reduce stress that I am feeling. I tell myself it is o.k. if I am late, the doctor will still be there, and 9 times out of 10, he is running behind himself.

Taking practical steps to improve your situation can also help reduce anxiety and worry. A member of one of our Internet groups provided a good example. This person had gone to the emergency room because she had taken her medications three times in one day. When she got home, she was worried that brain fog might lead her to make the same mistake again. She asked her group for suggestions. The group responded with several ideas of systems for keeping track of her medications. She wrote the group a few days later to say that she had bought a pill box with compartments for each day of the week and that she was much less worried about repeating her mistake because she had a system she trusted. Here’s what some other students have said about problem solving.

I try to work out a practical plan for the things that are bugging me that I feel I can change. Sometimes the problems seem overwhelming, but the advice of tackling one thing at a time really works.

I have spent quite a bit of time analyzing my activities, everything from how long I stayed somewhere to ways to minimize pain in doing chores. From this analysis, I have tried many different props that have proved to be very helpful, such as a book holder for the newspaper.

Doing things that are enjoyable can be a stress reducer. Positive experiences counteract the thought that illness means only suffering. Also, pleasurable activities lower the frustration of being ill while distracting you from your symptoms. Here are some quotes that attest to the healing power of enjoyable activities.

When I was first sick, I had a lot of guilt about not being a productive individual and thought I did not deserve any fun. Later I thought that because my stress was big, the stress reliever had to be big too. What I finally learned was that fun was really key to helping me reduce my stress and that fun can come in many ways, big or small.

Planning positive experiences helps reduce my stress. Outings with my husband and children, watching a favorite TV show at night, and taking overnight trips to nearby towns or state parks [are] particularly stress relieving.

Enjoyable activities are so very important to me to show me that I can have a good life even though I have CFS, things like hobbies, outings with a friend, having a friend over or shopping.

Here are several types of positive experiences, all of which can help lower stress.

Journaling has been very helpful to me because by simply writing about what is bothering me I am usually able to let it go instead of worrying about it.

The thing that has worked best for me is to record the things that are stressing me in a stress journal. It seems that identifying them and putting them in writing, not only helps the stress level, but by identifying them I am able to pinpoint the problem. This keeps the churning worries in my mind to a minimum.

Another use of journaling is to help you change perspective on your life. Some students have said they found it very helpful to keep a journal in which they noted several positive events for each day. Over time, they found that their mental attitude toward their illness and their life changed in a positive direction. A model for the gratitude journal can be found in Sarah Ban Breathnach’s book Simple Abundance Journal of Gratitude.

I have re-awakened a life-long interest in artistic pursuits. Earlier in my life, I liked music, then needle crafts, now it is calligraphy and rubber stamping, in which I find a tremendous amount of pleasure and comfort.

I find that taking a walk helps if I can get outside and be alone to do it. If I can’t, lying down in my bedroom which is very soothing (sage green walls, wood floors, candles lit) can also be great. I am an avid reader, so reading some fiction for pleasure helps me relax.

I spend much of my time in quiet, relaxing activities such as TV, reading, needlework, etc. If I have a day that does not allow me to participate in these activities to some minimal extent, I find myself extremely tense, stressed out and emotional.

Our thoughts can be another source of stress. One such cause of stress is having unrealistic or inappropriate expectations. For example, we may hold ourselves to housecleaning standards that may no longer make sense. As one student said: “I am learning to recognize that in the long run it doesn’t really matter if my floors aren’t spotless or the laundry doesn’t get done on Saturday.” Becoming aware of the standards you have for yourself and for others can help you avoid overdoing, as suggested by another student, who said:

I’ve worked on reducing expectations of others and myself. I’m a ‘recovering perfectionist.’ I frequently battle with those tendencies. When they get the better of me I always overdo, even when I’m not feeling well to begin with.

It may also help to change your expectations about how others view you.

I let go expecting people to respond to me the way I think they ‘should’. For example, I let go of expecting that people will understand my disease. So with no expectations, I get less resentment, which leads to less stress in life.

Another area for mental adjustment concerns the thoughts we have when bad things occur. For example, an increase in symptoms may trigger thoughts like “I’m not getting anywhere,” “I’ll never get better” or “It’s hopeless.” Negative thoughts like these can then make you feel anxious, sad, angry and helpless. The thoughts and the stress they create may make your symptoms worse and trigger another round of negative thoughts. The cycle can be very demoralizing, leading you to an overly pessimistic view of your situation and making it difficult to motivate yourself to do things to feel better. But you can learn how to recognize and change habitual negative thoughts to be more realistic and more positive. Chapter 10 presents a system for recognizing and gradually changing habitual negative thoughts. This system can also be used to uncover and change unrealistic expectations.

Speaking up for yourself can be a stress reducer in a number of ways. Saying ‘no’ can help you avoid doing things that would intensify your symptoms. Also, presenting your position rather than suffering in silence can replace frustration with action.

I have stopped trying to be everyone’s friend and do whatever people need from me. I have now a few, close friends who I can count on and who count on me.

Being ill is both inherently stressful and isolating. Having people in your life who understand and respect you is a balm to the soul. Just being listened to and feeling connected to others is healing. Beyond that, talking may help you clarify your situation or their response may enable you to see your life in a different and more constructive way. Family members may provide such support and you may also find it through developing relationships with fellow patients. Support also means practical assistance, which might include such things as shopping, cooking, bill paying or housecleaning. See Chapter 12 for more ideas on creating a support structure.

Prescription medications can be helpful as part of a stress management program. Here’s what one student said:

I’ve been on Zoloft for over two years. I resisted the idea for a long time, and now kick myself for having done so. It has helped level off my reactions to everyday stress and evened out my mood. Medications are not for everyone, but I’ve learned to keep my mind open to treating all aspects of my life and not relying on solely one approach.

Stress avoidance is preventive, using self-observation to learn how stress affects you and then taking measures to avoid stressful circumstances. For example, you may notice that when you hit a limit, any further activity will intensify your symptoms. In such circumstances, rest can reduce the stress on your body. Planned rest can be an effective stress avoidance strategy. Having good relationships are a buffer against stress. People with supportive relationships have lower anxiety and depression.

The main ways that people in our groups prevent stress are by avoiding stress triggers and by using routine or scheduling.

We may have particular circumstances in our lives that “set us off.” If we can identify these stress triggers, we may be able to avoid them or reduce their impact. You might think of triggers in the categories of people, substances and situations.

Some patients find interactions with particular people are the cause of disabling stress. Responses they have made include talking with the person, limiting contact, getting professional help with the relationship, and ending the relation.

I gave up on several difficult relationships. I was amazed at how great I felt and also how those people never even tried to resurrect the relationship. Guess I wasn’t as indispensable as I thought!

I have cut people out of my life that only irritate or don’t support me. It was a hard thing to do but has made a big difference in how I feel, especially about myself.

I have managed to get rid of some toxic relationships, people who talked all the time, were very scattered and unfocused, and not on the path of self-discovery. It took me a while to recognize that these types of relationships were causing me so much stress.

Food, chemicals and other substances can trigger symptoms. By identifying and avoiding specific foods or other substances you may be able to avoid relapses.

I avoid eating foods that I am allergic or intolerant to and stay out of smoke-filled rooms.

Eliminating or at least restricting aspartame and other sweeteners, MSG, and caffeine has helped to keep me more even-keeled.

In terms of situations, if you are particularly sensitive to light or noise or crowds or experience sensory overload in other ways, avoiding those situations can help you control symptoms.

Awareness and acceptance of my limits has helped me to avoid certain situations that are stressful, such as being with large groups of people or spending too much time in a store with bright fluorescent lighting.

To avoid stress I try to avoid situations that cause me stress. I only drive when I have to. I avoid crowds. I try to avoid arguing with people to whom I am close.

Novelty is another source of stress. It takes more energy to respond to a new situation than it does to something familiar. Given our limited energy, saving it for healing is desirable. One way to do that is through making your life predictable. Some patients have done that through routine: living their lives according to a schedule. They have been able to reduce the surprises and emotional shocks in their lives, and thereby reduce their stress. By knowing what to expect, they have reduced pressures on themselves. Any steps that increase predictability are likely to lower stress.

Up until two years ago my life had little routine in it and the result was frequent, lengthy crashes. My life was one big roller coaster. Now that I have a regular schedule, I can plan much better. Routine may sound boring, but it’s a must for me.

Having a regular routine has been very useful, because having a predictable life has been the most effective way for me to reduce stress. A life with few surprises has reduced the pressure on me and given my body more time to heal.

Many of the pacing strategies described in Chapter 6 are also effective stress reducers. Scheduling activity based on priorities, timing activity for the best hours of the day, and staying within known limits all help control stress.

I have a fairly routine lifestyle, with specific activities sprinkled throughout the week, both health-related and fun, giving me plenty of time to rest and relax at home, but also leaving me time for socializing.

I plan activities that will take more energy (physical, emotional, or mental) during my good times of day.

I found that I could avoid much stress by knowing my limits. Planning too many activities in one day or scheduling them too close together are big stress triggers, so I try to prevent their activation by limiting the number of activities in a day and by giving myself plenty of time in between two activities.

The examples below illustrate several different approaches to relaxation. They are useful both for stress reduction and for managing pain. Because we are different, some techniques work well for one person and other techniques work better for another. In particular, techniques using imagery seem very helpful to some people, but not useful to others. You might try several techniques to see what works for you. Also, you may find that a particular technique works for a while, and then becomes ineffective. If that happens, try something else.

It usually takes several weeks of practice to develop skill in using a technique, so allow some time before expecting results. To be fair, you should practice four or five times a week, setting aside for each session ten to 20 minutes when you won’t be disturbed. Learning concentration is a common problem when doing a relaxation practice. The mind tends to wander, so having patience is necessary. Ironically, it takes work to learn how to relax.

There are many good relaxation and meditation tapes available today. Some have step-by-step instructions to lead you through a relaxation procedure, while others have music or relaxing sounds from nature. You may want to use such tapes or record your own from the examples you find below. If relaxation makes you anxious or seems unpleasant, try other stress reduction techniques.

When we are under tension and stressed out, our breathing can become shallow or we may hold our breath. Breathing in a deep, relaxed way can reduce your tension and help you relax. Here’s one way to do that, by focusing on your breath. You can use it alone as a stress reduction technique or in combination with other practices, such as those you will read about below.

Sit or lie down in a quiet place where you won’t be disturbed for a few minutes. Focus your attention on your breathing. Take in a long, slow breath through your nose, hold it one or two seconds, and then breathe out through your mouth. The key idea is to concentrate your attention on your breathing, keeping it slow and easy. If you discover that your mind has wandered and you are thinking about something else, just return your attention to your breath. As you breathe in a slow and easy way, you should feel your body relax and a sense of calmness replace anxiety. If you feel dizzy, stop the technique and breathe normally.

Once you feel confident about using this technique, you might try using it when you feel under tension or notice that your breathing has become shallow. For example, it might help you calm down when you are caught in traffic, stuck in line, or in a heated discussion. The basic principle is to focus on your breathing in order to slow down anxious or negative thoughts and to reduce the adrenaline flowing through your body. Simply noticing your breathing can often reduce anxiety. Sometimes taking even one deep breath and letting it out slowly can reduce anxiety. But do not use this technique if it distracts you from paying attention to the task at hand, such as driving.

The body scan is a technique that helps you relax your whole body. It is associated with Jon Kabat-Zinn, the director of the Stress Reduction Clinic at the University of Massachusetts Medical Center. He recommends that you do it lying down, but any comfortable position is OK. You begin by spending a few minutes focusing on your breath, visualizing it going deeply into your body and then out again.

After several minutes, direct your attention to the toes of one foot, becoming aware of any sensations you feel there. Don’t try to relax your toes, but rather just concentrate your attention on that part of your body. Paradoxically, that is often sufficient to bring about relaxation. If you find your mind has wandered, bring your attention back to your breathing and to your toes. After 20 seconds or so, move your attention to the bottom of the foot. Again, don’t try to relax it, just become aware of any sensations that are present. Then move on to the top of the foot, the ankle and the calf. When your mind wanders, bring it back to your breath and to the part of your body you are focusing on.

Gradually work through your whole body, moving up one leg to the hip, then doing the other leg starting with the toes. Then move on to the stomach, chest and back, followed by the hands, arms and shoulders. Lastly, focus on the neck, jaw, mouth, eyes, and scalp.

The body scan has two keys: 1) focusing attention on one part of the body at a time without consciously trying to relax it, and 2) returning your attention to the body when your mind wanders.

This technique can also be used for falling asleep, because it helps distract you from thoughts and worries by keeping your attention on your body.

Another way to relax the body, called progressive relaxation, is the mirror image of the body scan. In this procedure, you first tense and then relax all the major muscle groups in your body, from your feet and calves up to your face and head. Note: Do not use this technique if tensing your muscles will lead to a flare. Try another approach. Some patients are not able to relax their muscles after tensing them.

As in the body scan, you begin by lying down or getting in another comfortable position. Then spend some time doing focused breathing, drawing air in through your nose down into the abdomen and letting it out through the mouth. As you breathe out, imagine that your muscles are heavy and your body is sinking into the surface below you.

Next, become aware of your feet and calves. Pull your toes toward your face, then relax and release the tension. Do the same for the thighs and buttocks, abdomen and chest, hands and arms, and finally the muscles of the face and head. For each part of the body, first tighten the muscles and then relax them. Now take a deep breath and feel any remaining tension flow out as you breathe out.

A technique for creating a state of deep rest is the relaxation response, a tool developed by Dr. Herbert Benson of Harvard. The technique involves keeping your attention on a point of focus, usually a word that you repeat silently to yourself, something like “relax” or “peace.” Your mental device could also be a prayer, image or feeling.

The key to the technique is to adopt a passive attitude. As you focus on your mental device, you will experience distracting thoughts, images or feelings. But don’t worry; it happens to everyone. When you find that you have become distracted, simply return to your point of focus. Some people find it helpful to focus first on their breath and then on their mental device. Whatever strategy you adopt, use it whenever you discover that your attention has drifted away from your point of focus. You have successfully elicited the relaxation response if you find yourself in a pleasant state like the feeling you might have lying on the beach on a warm summer day or the sense of detached relaxation you feel just before falling asleep.

Follow these steps to elicit the relaxation response.

Imagery, too, can be used for relaxation. The technique below, which comes from Dr. David Spiegel of Stanford, illustrates the principle that it is very difficult to be anxious when physically relaxed. When you are worried about something, you can use this technique both to calm yourself and to work at solving the problem that is bothering you. The goal, as described by Spiegel, is to help you think about a problem constructively “in such a way that you leave your body out of it.” The steps are as follows:

A similar approach is called guided imagery. It uses our ability to create scenes in our mind as a way to distract us from worry and help us relax. This approach usually has three steps.

Benson, Herbert. The Relaxation Response. New York: Morrow, 1975.

Hallowell, Edward. Worry. New York: Ballantine Books, 1997.

Kabat-Zinn, Jon. Full Catastrophe Living. New York: Dell, 1990. (Meditation tapes available from www.mindfulnesstapes.com )