The Vicious Cycle of Fibromyalgia and Emotional Impact: What to Do
By Rosalie Devonshire MSW, LCSW •
November 7, 2005
This article is reproduced with kind permission of FM survivor Rosalie Devonshire, a noted fibromyalgia patient educator, therapist, and co-author with Julie Kelly of the highly recommended self-help book, Taking Charge of Fibromyalgia.*
If you had been a healthy, active person and develop fibromyalgia, the symptoms can create havoc in your life. Your inability to engage in activities you once enjoyed can cause you to become frustrated, angry, worried, or depressed.
• Your inability to meet the needs of your children, spouse, job, or community may contribute to a sense of inadequacy and worthlessness.
• Your friends may start to distance themselves.
• You may lose your job or marriage, causing serious financial distress and emotional pain.
These are all normal reactions to the losses you suffer when fibromyalgia strikes. You are not alone, however. Many people with other illnesses such as rheumatoid arthritis, heart disease, cancer, diabetes or other chronic illnesses have the same reactions.
Unfortunately, because fibro patients have no obvious physical or lab abnormalities, many have been told by their friends, family, or even their doctors that there is nothing wrong with them and their symptoms are all in their heads.
“Just get the stress out of your life,” they say, “and you will be fine.” These people are wrong. Fibromyalgia is a real illness and its psychological impact should not be dismissed.
Fibromyalgia Can Directly Affect Your Emotions
Research has shown that up to 30% of fibromyalgia patients can experience psychological distress, including anxiety and/or depression. Researchers believe that some of the emotional reactions could be due to the way fibromyalgia affects neurotransmitters and other regulatory systems in our bodies.
• Disturbances in hormones can lead to low blood sugar or thyroid hormone, which can also produce depressive symptoms.
• Adrenal disturbances can lead to feelings of panic and anxiety.
• Immune system problems can cause people to feel fatigued or depressed.
• Just the fact that you cannot get a good night’s sleep is enough to make anyone irritable, anxious or depressed. Studies have shown that when people were deprived of just a few nights’ sleep, they developed many of the same symptoms fibromyalgia patients have, including emotional distress and problems with thinking, memory, and judgment. As any mother knows, children who are tired become irritable and tearful – why would adults be any different?
• Researchers have found a problem in the stress response system in fibromyalgia patients. This system is composed of the adrenals, hypothalamus, pituitary and thyroid glands. Due to a breakdown in regulation in this system, people with fibromyalgia have trouble processing and handling stress - the stress response system may be unable to respond appropriately to even minor stressors. Not only is the disease causing enormous stress in your life, but it’s keeping you from handling it properly. The stress response system is in overload!
It has been clearly shown that stress aggravates fibromyalgia.
Reducing stress and its impact may be easier said than done, however. All people (but especially fibromyalgia patients) have stress in their lives which may be unavoidable. Counseling and/or stress management can help you cope with fibromyalgia symptoms and improve your overall stress reactions.
But while counselors trained in treating fibromyalgia patients can be very helpful, it requires work on your part as well. Making changes in yourself may not be easy, and it is natural to resist it. Some people are looking for a magic pill to take their problems away.
It is very important to understand that there is no magic pill in fibromyalgia. Research shows that a combined multidisciplinary treatment approach is the most effective way to achieve symptom relief.
Although it may not be a cure, many patients find that making appropriate changes in their lives can reduce their symptoms, in some cases by as much as 90%!
Fibromyalgia Not Only Affects You; It Affects Those Around You
How are your family members handling your illness? They may have numerous feelings regarding the changes they see in you and may not be expressing their feelings for fear of causing you more worry, or they may not know what to say to you or how to express their thoughts.
• It is very difficult for others to understand how much pain you are in because fibromyalgia is an invisible illness. You look great, right? This can set up a vicious cycle in which you and your family members can become distrustful, disconnected, or estranged from each other.
• You may find yourself leaning on your family members or friends for emotional support. If you are asking too much of them, they could become resentful or they might feel inadequate to provide you with the aid that you need. Ask yourself if you are requiring too much of your spouse or your friends. If you are, then it would be helpful to contact a professional you could speak to instead.
• If you have a spouse or significant other, they may be worried about numerous things, such as: how long will the illness last, will your symptoms become worse over time, will your social life suffer, or how will they manage to take up the slack for household chores due to your disability?
• If you cannot work due to your disability, they may be worried about financial responsibilities. They may become frustrated if you do not improve, or they could be angry. Many spouses or significant others keep their feelings inside for fear of causing you more worry; some resort to anger and refuse to believe that you are really sick, still expecting you to handle all the household tasks you used to be able to accomplish prior to developing fibromyalgia.
• Intimate relations may become a thing of the past. Many fibromyalgia patients are too tired or in too much pain to enjoy sexual relations. Side effects of the medications may also lead to a reduced sexual desire or problems with achieving orgasm. Partners may be afraid to initiate intimate relations for fear of causing you more pain. This can lead to frustration, anger or a feeling of loneliness within relationships. Talking about this problem can be very helpful; it can alleviate fears, worries or frustration.
You may have to make more of an effort to include physical intimacy in your lives; making those times special by planning an evening out together at a romantic restaurant, lighting candles in your bedroom, or simply by setting aside time to be together can improve your intimate life considerably. If your partner is willing, they might perform a massage with some fragrant oils to help set the mood. Be creative. Just because you have fibromyalgia does not mean that you can not have a satisfying sexual life with someone you love.
Couples counseling can be helpful if you are having difficulties addressing these issues by yourselves.
Some fibromyalgia patients have reported that they have lost not only their health, but their partners or spouses due to the illness. This does not have to happen if steps are taken to communicate feelings to each other. If you find you have a difficult time talking about issues, a trained counselor can aid you in sorting out any communication problems you have.
You may find that due to the limitations caused by fatigue or pain you have stopped socializing with friends. Maybe you can not walk with the group that you used to walk with, or go meet your friends at the local exercise gym. You may be too tired to attend church on Sunday mornings and too tired in the evening to socialize in groups that you once enjoyed such as community action groups.
Maybe your friends do not call you anymore because you are unable to keep up with the activities you enjoyed with them in the past, before you developed fibromyalgia. For people who have had symptoms for many years, they may have already learned how to pace themselves.
• Many people find support groups valuable not only for information, but for finding others who you can share and exchange feelings and problems with. You may make a friend at your local support group who you can commiserate with or a new group of friends who you can exercise with.
• Reaching out to make new friends who understand your limitations can reduce feelings of isolation and loneliness. Having a phone buddy may help. Someone who you can call on the phone to share feelings with or just to chat about life could provide some support and connection.
Illness Affects Children, Too...
Often, people believe children do not need to know about problems in families. They think children are too young to understand or do not want to tell them for fear of causing them unnecessary worry.
My counseling experience with many children and adolescents has shown that children do need to be educated about your fibromyalgia. If they are not told, they may worry more.
Sometimes children believe they have caused the illness by some act they did that we may not even be aware of. Their imaginations are very active. If we do not ask them how they are feeling or thinking they may not tell us.
• Children are often concerned that an illness may cause death to a parent. Letting them know how fibromyalgia affects you at a level they can understand can alleviate many of their fears and concerns.
• It is also important to find special time to spend with your children. Your fatigue and pain may keep you from being able to enjoy physical activities together, but there are many other fun things to do with children that do not require much exertion on your part.
- Most young children and even adolescents love to play games, such as checkers, monopoly or chutes and ladders. This is also an activity the whole family can enjoy.
- Reading a book to children before bedtime does not require a lot of exertion on your part and goes a long way to improving your relationship.
- Watching a movie together may be nice to do, but I have found that activities in which you interact with your children on a more personal level will bring you closer together.
• It is extremely important that you do not lean on your children as emotional crutches. This can lead to problems for them in the future. Although it is appropriate to ask them to help you with physical activities you cannot perform, please do not overdo it or ask for more than they can handle. Be mindful of their age and capabilities.
A five-year-old can perform tasks such as emptying the dishwasher, setting the table, or emptying small trash cans. Older children can handle more. Younger ones can pick up their own toys.
Once again, if you are having difficulties with your children, counseling can help.
Don’t Be Afraid to Seek Help
Fibromyalgia patients are often reluctant to seek counseling to help them deal with the emotional impact of their illness. Many are sick and tired of being told that it’s all in their head, and agreeing to see a counselor feels like an admission that this is true. On the other hand, they may have some fear that their symptoms are really psychological. Or they may be afraid that the counselor will blame them for their symptoms – and, unfortunately, this does occasionally happen.
There are some counselors out there who persist in the mistaken belief that fibromyalgia is a purely emotional illness. That is why it is important to seek help from a knowledgeable therapist who has experience dealing with the problems of fibromyalgia sufferers.
Counseling / Psychological / Taming the Brain
20% to 50% of patients will develop depression or anxiety - usually due to living with a chronic illness and losses associated with the illness disability.
• Cognitive behavioral therapy (time limited, not in depth) 70% improvement when used in conjunction with other treatments and better than just medication alone.
• Changes negative thought patterns and behaviors to positive ones.
• Stress management - meditation, relaxation techniques, appropriate breathing.
• Balance, pace activities.
• Avoid “toxic” relationships and activities.
• Don’t overdo.
• Positive attitude / accept your limitations / be joyful for what you have.
• Getting support from knowledgeable healthcare professionals.
• Repeat the serenity prayer often.
• Journal thoughts, feelings.
• Become aware of what your body is saying to you.
• Do at least one thing daily you enjoy
• Learn to say no.
• Take care of flares when they start - have a plan in place.
• Avoid isolationism - join a support group.
• Change perfectionism - you can’t do everything.
• Get help - it is not a sign of weakness.
Walking the road to wellness is better when you don’t walk alone.
- Rosalie Devonshire, MSW, LCSW, fibromyalgia survivor
* Note: Taking Charge of Fibromyalgia: Everything You Need to Know to Manage Fibromyalgia(Fifth Edition), by Julie W. Kelly, MS, RN, and Rosalie Devonshire, MSW, is a great and highly useful guide to self-managing your FM treatment program, and is an excellent resource for patients, their families, and health care professionals.
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