Coping with Fibromyalgia and Chronic Fatigue
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The following excerpts are taken with the author's permission from Chapter Ten of Miryam Ehrlich Williamson's book Fibromyalgia: What you can do about Chronic Pain and Fatigue. This book, first published in the USA as Fibromyalgia: a comprehensive approach, won an award from the American Medical Writers Association for excellence in medical communication. It is available in an Australian edition.
Miryam's latest book, The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life, is now also available in Australia. Read an extract here on this website.
She has also published a book on Insulin Resistance, called Blood Sugar Blues, more information.
Maintaining Good Emotional Health
Listening to Your Body
Troubleshooting Fibromyalgia
Publication details
Your mental state has a profound effect on your fibromyalgia. Your physical pain is real enough, but what goes on in your head can make it more or less bearable.
Take anger, for example. When you are angry, your body reacts: Your adrenaline starts pumping, your heart races, you feel a surge of energy as your blood sugar level soars.
If you have FM, you will probably pay later for this adrenaline surge with overwhelming fatigue, or pain, or both, which is why I address anger first. If you fly off the handle frequently or if you are carrying around a load of anger over your situation or over something that happened at a previous time in your life, you need to work on taking control over your anger. Learn to save it for the few really appropriate times.
Much of this work involves thinking about what really requires an angry response. Faced with a potentially anger-producing stimulus, before you do or say anything take one or two really deep breaths. The trick to deep breathing is to try to draw breath into the space about an inch below your navel. If you're doing this right, one breath is enough. Two is for novices. Get good at this. It really helps dissipate anger. If you practice, you will soon learn to run the anger stimulus against your values and needs and you will eventually react appropriately to the situation automatically.
The long-term effect of stress is another example of the interaction of body and mind. The important lesson for people who have fibromyalgia is that stress causes pain and, of course, pain causes stress, so we have to find a way to break the cycle. Stress reduction is an important component of your overall fibromyalgia regimen. Attend a stress management course or workshop if you can. If your health care provider recommends that you learn stress-reduction techniques, don't take it as a suggestion that your pain is of psychological origin. The ability to manage stress will be one more tool in your arsenal to fight fibromyalgia.
Here are some other suggestions for finding your mental and spiritual balance:
Above all, learn to ask for what you need and to receive it gracefully. One of the great gifts fibromyalgia has given me is the lesson that it is often better to receive than to give. If you think about this stricture that our culture has put on us, that nobody should ever ask for help, you can see how ridiculous it really is. If nobody ever asked for help, then no one would ever have the opportunity to be helpful. I've learned to make my request and to say simply thank you when my request is fulfilled. I try to be helpful in ways that are possible for me, thereby returning my debt to those around me, but I have learned to swallow my pride and admit that I am nothing more than human. Sometimes I can give, sometimes I need to be given to. It's a warm feeling to be human. Let it come.
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You are the expert on your own body. Nobody knows it the way you do. But if you are like most people in our society, you have lost the intimate relationship with your body that you had when you were small. If you have had FM since childhood, you learned long ago that you had to ignore pain and fatigue if you were going to accomplish anything. Even if you grew up without fibromyalgia, you had to learn to ignore your own wish to be active, in order to sit in class all day. You may have learned to ignore feeling ill when it was inconvenient for you or those around you to have you sick. You learned to eat when it was time to eat, instead of when you were hungry, and perhaps you were taught to eat everything on your plate whether you liked it or not, whether you were hungry or not. In these and other subtle ways, most of us were taught to ignore our bodies instead of listen to them.
At one time in my life, I put so much energy into ignoring pain that I nearly died. At another time I ignored pain in my lower back until it turned into a full-blown case of sciatica and I could no longer walk. I didn't know any better, but now I know there are times when pain has an important message for us, and we must listen.
But there is another kind of listening to your body that is just as important. It involves paying attention to the effects on your body of everything that happens to it: what you eat, what you breathe in, how you move, how you feel, what you say and hear, what you do, and what is done to you.
If listening to your body becomes a habit, you will know almost immediately whether something is good or bad for you. If you listen to your body, you will take control over your body, and that control is the vital ingredient in living with fibromyalgia. In the next section I suggest some techniques for listening to your body when it tells you about its problems so that you can work on finding solutions.
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You have come to a place where you are ready to start troubleshooting your own version of fibromyalgia. When I started this process for my own case, my approach was much like that of a mechanic troubleshooting an automobile problem or a computer user trying to figure out how to make a particular piece of software work properly. Fortunately, you don't have to be an expert to improve your life with fibromyalgia. Troubleshooting is a step-by-step logical process that anyone can do. These are the steps to follow.
If you are oriented more toward pictures than words, you may prefer to make drawings or diagrams, rather than lists. If you learn better from what you hear than from what you read, you may prefer recording your findings on a tape recorder, rather than writing them down. Whatever method you use to figure out what you need to do to help yourself, the technique remains the same: set priorities, experiment with solutions, and record your results.
If you have a doctor who is well informed about fibromyalgia and willing to support you in your effort to improve your condition, involve your doctor in this troubleshooting approach. This kind of physician can be a valuable resource, a consultant who helps you to figure things out and provides information that you would be otherwise hard pressed to obtain. Some of the chemical approaches you want to try may require a doctor's prescription. Others, such as massage, physical therapy, or classes in stress reduction, may be affordable only if the doctor prescribes them and insurance pays for them. If you have the kind of doctor who will not support your efforts, you may want to make finding the right doctor your first priority. [See You and your Medical Team for advice on this point ...]
An important resource that you should not overlook is your pharmacist. Find one who has the patience and interest in you to help you investigate drug interactions, whether the drugs are prescribed by a doctor or purchased off the shelf. The more different substances you take, the greater are the chances for two or more of them to interact in undesirable ways. A good pharmacist is your best line of defense against untoward interactions, and since it's easier to change pharmacists than it is to change doctors - you just go to another drugstore - finding a pharmacist you like and trust is a relatively easy first step in your troubleshooting program.
List the problems to be solved. Here are some of the fibromyalgia-related problems that you may want to list: sleep, musculo-skeletal pain, visceral/organ pain, irritable bowel, urethral syndrome, headache/migraine, fatigue, menstrual problems, emotional problems, circulatory problems. List them in order of their importance to the quality of your life.
List the symptoms of each problem. Under sleep, for example, you might list that you have trouble falling asleep, that you have trouble staying asleep, that you wake up at 3:00 A.M. and cannot get back to sleep, a combination of these, or something different. Do this for each of the problems on your list, and arrange them according to their importance in the quality of your life.
List the possible causes for each symptom. To continue the sleep example, think about what keeps you from falling asleep: worries? street noise? pain? someone snoring? sleep apnea? Try to relax when you think about possible causes. Let your mind focus on thinking about what happens (or does not happen) before these symptoms appear. This may take some time, but don't give it more than forty-eight hours or you may never get back to this project. You can always add things later. In fact, as you continue this process, you may want to spend some time reading articles in magazines or medical journals about the symptoms you feel you know least about. When you feel you have enough to work with, or within two days at most, arrange these possibilities according to their importance in causing the symptom.
List the possible remedies for each symptom. Some symptoms will lead you back to another of the problems to be solved, which is why you may like the idea of drawing a diagram. Don't worry about this. You'll get to that problem before long, and you may want to change your priorities at that point. Others are simpler: Is somebody's snoring keeping you awake? Possible remedies include an antisnoring device for the snorer, earplugs for you, separate bedrooms, and whatever you can think of. Take another forty-eight hours if you need to, but don't let this step be your last in this project. Remember to consider all kinds of possibilities that make sense to you, some of which may be medicinal, nutritional, herbal, physical - massage, for example - and more. When you have enough possible remedies to get started, arrange them in order of your estimate of the likelihood that they may help and are feasible.
Try one thing at a time. Pick your number one problem, one or more of its symptoms, and, ordinarily, one of the possible remedies. Pick more than one symptom at a time to address, or more than one possible remedy, only if they are related and you can't see how to do one without the other. For example, you might choose to address street noise and snoring simultaneously, by using earplugs and getting your sleepmate to try an antisnore device. You should not, however, try to address sleep and pain at the same time. I had to make this choice. I gambled that my pain was not severe enough to keep me awake, if only I could get to real, restful sleep. As it turned out, once I solved my sleep problem my pain was almost gone. Your experience may be completely opposite, but you'll probably be more successful if you pick one to work on first.
Listen to your body. Keep careful notes. Describe the problem, what symptoms you are attacking and how you are attacking them, and record dates and dosages. Note your results in detail: how you felt before you tried it, what happened after you tried it. Do this day by day; most remedies do not work immediately but need time to be effective. Be patient. It may help to set a time limit in advance for each thing you try. For example, if you try earplugs and an antisnore device because you think your sleeping partner's snoring is the major cause of your insomnia, it could take two or three days to know whether you've found a solution. It may take that long to get used to the earplugs and to get your mind geared to anticipate sleep rather than wakefulness, but it shouldn't take more than a week. Medicines, nutritional supplements, or herbs might take days, weeks, or months to take effect. If you know enough to try a nonmedicinal remedy, or your doctor knows enough to prescribe a drug, then you should be able to estimate how much time you give the trial before moving on to something else. Of course, with few exceptions, if something you try soon makes you feel worse, you should probably stop it and reconsider.
It is impossible to overestimate the importance of keeping records. A week from now, maybe sooner, you will forget what you did and how you felt today. Decisions are much harder to make if you have incomplete information about what you have tried and what the results were. I suggest that you use left-hand pages in a notebook to record what you did, and right-hand pages to record the results.
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© Miryam Ehrlich Williamson 1996
reproduced by kind permission of the author
American and Canadian editions:
Fibromyalgia: a comprehensive approach; what you can do about chronic pain and
fatigue by Miryam Ehrlich Williamson, foreword by David A. Nye;
1996 Walker Publishing Company, Inc., (USA); Thomas Allen and Sons, Canada Ltd, Markham,
Ontario (Canada). ISBN 0-8027-7484-9 (paperback)
Australian edition:
Fibromyalgia:
What you can do about Chronic Pain and Fatigue
by Miryam Ehrlich Williamson, foreword by David A. Nye;
Allen & Unwin, 1998.
ISBN 1-86448-692-9 (paperback) $19.95
Publisher: Allen & Unwin phone
02 8425 0100; fax 02 9906 2218
email: frontdesk@allen-unwin.com.au
Miryam's book on insulin resistance:
Blood Sugar Blues, Walker & Co., October 2001.
ISBN 0-8027-7610-8 information and
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last revised 31 August, 2005