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The following chapter is taken with the author's permission from When the Pain is Real! Fibromyalgia: the Chronic Muscle Pain Syndrome by Teresa Kruckenberg.
The book contains an introduction and understanding of FMS, treatment options, living skills, medical research, related disorders, patient stories, cartoons, stretches, and appendices with resources.
This chapter deals with adjusting to life with chronic illness.
[Introduction] [Spirituality] [Willingness] [The Grieving Process] [Acceptance]
[Attitude Adjustment] [Balance] [Stress] [Dealing with Others] [Work]
[Support Groups]
[Publication details, and how to order]
Once the pain cycle has started, thoughts and feelings play a role in amplification of the pain. The pain cycle can not be broken by physical and medical treatment alone. A multi-system approach is essential for effective treatment of FMS, and this includes reducing stress and developing positive living skills. This chapter discusses various tools (such as: living spiritually, willingness to change, the grieving process, acceptance of FMS, achieving a positive attitude, balancing activities, reducing stress, dealing with others, dealing with work, and joining support groups) for achieving the mind/body balance.
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The preceding chapters describe the fibromyalgia syndrome and treatment for the syndrome. This chapter discusses the spirituality and the living skills required to complete a full treatment plan. Do not let the word spirituality scare you. Spirituality means that you place faith and dependence on a power greater than yourself. This power can be the source that controls the sun, moon, tides, or it could even be your support group. Therefore, when this chapter refers to God, it means your own concept of your Higher Power. When this chapter refers to praying, it means talking to your own Higher Power. If you are agnostic or atheist, do not let this deter you. Just be open to developing your own concept of a Higher Power. Developing your concept of a Higher Power may take time. Follow your conscience on what feels right for you. Do not pick one person to be your Higher power because that person may let you down. Your Higher Power will be there for you at all times.
Maintaining a spiritual way of life is not mandatory for FMS treatment, however the benefits can be substantial. Spirituality gives you a basis for coping and changing your outlook on life, and can give you support and comfort through the rough times. Spirituality keeps you optimistic, and able to make the best out of the worst situations. Spirituality brings unconditional love, joy, patience, kindness, goodness, faithfulness, self-control, and humility. A good prayer for accepting how we are feeling today is the serenity prayer:
GOD grant me the SERENITY
to accept the things I cannot change,
COURAGE to change the things I can,
WISDOM to know the difference.
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Since over 60% of FMS patients feel better from exercise, this is the most effective tool. Try to become willing to exercise on a regular basis. Attend support groups to learn how others deal with their FMS. Become aware of how you feel physically and emotionally. Most FMS sufferers have learned to ignore their symptoms and their feelings. This will require a change in thinking on a daily basis. Treat your physical symptoms and learn how to feel again. For most, this may require counseling to learn how to express your feelings in a healthy manner. This is especially important with anger, since most FMS sufferers have an abundance of anger. Try to become willing to do these recommended therapies. If you are not willing, then pray to obtain the willingness.
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Grief is a normal loss reaction, that can be caused by losing someone, ending of relationships, and in the case of FMS; losing your health. With FMS there may be additional losses such as the loss of the ability to support yourself and your family, the loss of the ability to do things, the loss of freedom, and even the loss of friends in some cases. Each person has to go through the grieving process to heal normally. You have to feel the pain and go through the experience, letting go afterwards. The grieving process can vary from six months to two years depending on how the loss affects you.
It is a different kind of loss when you are not grieving for the death of someone else, but grieving for yourself. Resolution with grieving would be easier if the cause of FMS was known. It is important to let go of the old life so that you do not get stuck in blaming, the what-ifs, anger, bargaining and depression. Your family will be grieving also, and at times you may get impatient with each other.
There are five stages to the grieving process. These include denial (shock), anger, bargaining, depression (sadness), and acceptance. It is common to go through the stages in different order, and cycle through several times. Anger towards God, the doctors, and towards others is usually the first stage to go though. "Why me?" You cannot recover from the grieving state until why me is abandoned and you start to look at what you can do. Anger can make you stubborn and self-centered; the external world controls you. Anger is triggered when expectations are not met. This is common when we think, "my husband knows I'm not feeling well today, he should cook dinner." How is he to know unless we specifically ask? That is why it is important to not set expectations on others and yourself. The inability of others to listen can also be upsetting. Especially when you are told, "But you look so good." The doctors do not have all the answers, and the fact that there is no known cure for FMS can be upsetting. All of these situations may trigger anger, that is a normal reaction. The key is to work through the anger without hurting others and when we do to make amends for what we say and do. Methods to work through the anger include writing angry letters then burning them, crying, exercise, and talking to others. What works for one person may not work for another. Sometimes when you are angry you might just have to say, "I am angry with you right now, but I want to discuss this further after I have calmed down." Then walk away until things calm down. Just acknowledging the anger helps. Try to look at the other person's feelings by putting yourself into their shoes.
Then we go through a denial stage and try to do everything the way we used to. This will lead to worse flare-ups. The minute you start scheduling commitments the way you did before you are in trouble. The sooner we accept the syndrome, the better we will be able to handle it. The bargaining with God begins. "I promise to be of service to others if only you make me well ..." You may feel guilty for having been so overactive that you caused the FMS. The guilt feelings accumulate, and then depression may set in. This is a dangerous stage since depression is redirected anger inwards that may cause increased muscle tension. Fatigue may increase and movement will decrease starting a vicious cycle of immobility and pain. Finally, the last stage of the grieving process is acceptance.
Constructive methods of dealing with grief include crying, laughing and exercise. Try to talk with significant others and friends who are sensitive and good listeners. Be active in your treatment, go to movies with friends, or just do what you can. Take each day, ONE DAY AT A TIME, and don't worry about the past or future. All that you can do is take an honest effort to do what you can today. Try to stay positive because negativism will make things worse. That does not mean you can not feel your feelings if you are depressed and it's okay to have these feelings, it means you should try to stay hopeful.
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Accept is defined as: to take, to receive willingly, to believe in, and to understand as having a certain meaning. Acceptance is the key to becoming stress free and to move forward out of the stuck state. Freedom from stress is very important in FMS to keep the body relaxed. A relaxed body means reduced muscle pain. aching and stiffness. To gain acceptance you must learn to accept all people, places, and things as they are. You can not change others; all that you can change is your attitude. Nothing happens in God's world by mistake, unless you accept life on life's terms you cannot be happy. You may wake up today and not be able to move, but it is easier to accept that if it is for one day. Tomorrow you may feel better. It's important to do what you can and give up that which you cannot do for that day. Everything will wait!!
The first step toward acceptance is accepting the fact that you have fibromyalgia and you are different than others. Learn what your limitations are and adjust your lifestyle accordingly. Others will not understand what you are going through; how can they, unless they have FMS. Education of loved ones about FMS will help, but they may never fully understand living with FMS and that is okay. Do not set expectations on yourself or others for they are bound to be broken and cause anger.
Acceptance comes from understanding FMS and adjusting your life style to live with it. If you have not accepted your FMS, then pray for the acceptance. You may even have to pray for the willingness to want to accept it.
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Attitude adjustment involves changing how you respond to people, places, and situations. Sometimes you may perceive the situation incorrectly. Examine the situation closely before you respond. Things are not always as they appear. For example, if you work in customer service and an angry customer may be unhappy with the company policies but directs his or her anger onto you. If you recognize this, then you can step back and not take it personally.
Winners look at set-backs as learning experiences rather than disappointments. Refuse to let things bother you. Replace the negative thoughts with positive thoughts. FMS sufferers can not afford resentments.
Why is letting go of resentment and worry so important for FMS sufferers? One study showed that 1/3 of FMS sufferers experience an increase in FMS symptoms the next day after worry and thinking about problems *. Thirty-three percent is too high to even begin to think you deserve to worry about things. How do you go about letting go of the worry and resentment?
In the beginning and during flares of your illness, you may fall into the self-pity trap. This is okay in the beginning and at times, but do not dwell in it. Self-pity is destructive, and the negativism makes you feel worse spiritually, emotionally, and physically. Others do not want to be around people who are self-absorbed in pity. You may constantly be living in fear when new symptoms occur or during a flare. Try not to focus on these things but trust in yourself and God to help you through the pain. Remember that FMS is not a degenerative disease, and the syndrome may fluctuate between good and bad times. When you feel self-pity, take the time to write a gratitude list. This can include things like your family and friends, the fact that you are not disfigured, the positive things you can do, the weather, your home, and everything you are grateful for having. This is a quick way to ward off self-pity.
* Richard Hazlett, and Stephen Haynes, "Fibromyalgia: A Time-Series Analysis of the Stressor-Physical Symptom Association," Journal of Behavioral Medicine, Vol. 15, No. 6, 1992, pp. 541-556
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Learn how to pace yourself. Most FMS sufferers are type A personalities, overachievers, and perfectionists. If this describes you, then balance may not be in your vocabulary. Try to slow down the amount of tasks that you do, and become efficient with what you need to do. It is okay to ask for help. Others will not know what you need unless you tell them.
Following are some tips on obtaining balance:
Learn these and other strategies of pain management and when your FMS is acute enlarge the strategies you have learned.
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One of the main causes of stress is change. For example, personal loss (death of a loved one, losing friends, divorce, etc.), illness or injury, change in lifestyle, job changes, money problems, family changes, and retirement can cause stress. When you respond to stress your body responds by an increasing pulse rate, muscles tense, breathing rate increases, digestion slows, perspiration begins, pupils dilate, and blood pressure increases. Stress is a normal part of life and if you do not deal with your body's reaction to stress appropriately then it will lead to tension, anxiety and depression. Stress involved with having FMS is huge! Some examples of this are following:
If you feel good about the way you handle stress then you may not need to change. Ask yourself: "Do I ignore the symptoms of stress or do I take action?" If you need to change, start by learning coping skills. Positive actions for dealing with stress include exercise, hobbies, laughing or talking with friends, meditation, yoga, relaxation, massage, and leaving the situation until you regain the feeling of being in command. There are four ways to deal with stress:
You will have to decide if you want to accept the situation, alter it, or avoid it. Assertiveness is important in reducing stress. Much of our problem with people is lack of communication. The example problem, where the coworker did not answer the phone, could have easily been resolved by talking to the coworker and explaining how it was unfair, and asking for her or him to share the responsibility. A God box is useful if you decide not to alter the situation but can not seem to let go of it. Write down your situation and then put it into the God box and let God answer it.
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Who do you tell that you have FMS? Close relatives and friends will want to know more about it and how they can help. It may consume more energy and time to explain it to everyone you know. Especially if you work, it may not be appropriate to tell coworkers. It really depends on how disabled you are and how comfortable you are in telling others.
What do you say when they ask, "How are you?" Most people say this to be cordial. If you are feeling bad, they probably do not want to know. If you tell them, they will probably say, "But you look so good." (FMS sufferers often look good on the outside but feel horrible!) So, in this case, "I am hanging in there" is sufficient. If it is a close friend or relative, the truth may be more suitable. Try to remember that most people (even relatives) do not want to be around someone who complains about their health all the time. Thus, it is important to use a diary or talk to other support group members in order to let go of your frustrations.
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If you have recently been diagnosed with FMS, then you have to make decisions about your job, or whether you should go back to work. First give yourself at least a month of treatment (See Chapter 2) before you make any decisions. By this time, the severity of your FMS should be leveling off, and you are now better prepared for what to expect. For some people, changing jobs may be necessary. For instance if you worked at a physical job, you may need to change to a job less physically demanding. A job, that requires a lot of standing, may also need to be changed or modified. An occupational therapist will be able to provide recommendations about changes in your work and home environment. Some FMS sufferers find working at home a good option since they can schedule their hours and days-off based on their FMS severity. Flexi-time and part-time jobs may also allow for scheduling hours and days-off based on flare activity. If you find your job challenging and rewarding, then certainly, do not change it. Jobs that you enjoy and you find interesting, keep your mind off the pain.
If you are working, it may be beneficial to educate your boss about FMS. Sometimes it can be very upsetting when you are feeling bad and do not know when to try to go in to work, and when to stay home and rest. This knowledge will come with time; in the meantime try praying to do the right thing. If you have been keeping a scale on how you are feeling, you might set a limit on when to stay home. For instance, if your scale is 0 - 10 and you are in a bad flare about 5 - 6, then that may be your limit for when to stay home. If you have something very important at work to attend, then you might go to work for that appointment, then come home to rest. This will depend on what is best for you, and you will know what that is intuitively in time. If you are in doubt on whether to go into work or not, try it and go home when the going gets too rough; it shows others that you are doing the best you can.
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Fibromyalgia support groups exist around the world. These group members usually all have FMS to various degrees. Why should you join a support group? A support group meeting is the one place where you can go to discuss your feelings and symptoms with people who understand. They can provide support and strength. They help celebrate your successes and pick you up when you are down. They help you laugh about the ridiculous side of FMS. A support group is a place to belong.
Literature, and treatments offered in the area can be obtained at FMS support group meetings. You should attend support group meetings to become more knowledgeable about the syndrome; and that enables you to take control of your life. A support group meeting is a place where you can talk about things confidentially. Most support groups hold an occasional lecture by specialists to help learn more about specific aspects and research on FMS.
The more people in attendance at these meetings, the more power is generated to increase research on FMS. Recently in America, support groups were sent political action packages by the Fibromyalgia Network urging them to write their various congressional representatives for research on FMS. These letters and lobbyist action raised the National Institute of Health research funding for FMS from $372,000 for 1992 to 1.4 million for 1993!
If a support group does not exist in your area or fails to meet your needs then start your own support group. The Arthritis Foundation can refer new members to your support group. FMS associations can help get you started by giving advice on how to start a support group.
There is an on-line news group at news:alt.med.fibromyalgia for FMS if this is more convenient for you. This is basically a support group where you can ask questions, gain information, and make new friends.
Copyright 1995 Teresa Kruckenberg. Reproduced with the permission of the author.
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When the Pain is Real!! Fibromyalgia: The Chronic Muscle Pain Syndrome by Teresa Kruckenberg: May Publishing, Melbourne Australia; 1996. ISBN: 0646267590
The book is available by mail order. Ordering details:
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