Understanding and Living With Fibromyalgia
DO YOU hurt all over? Are you extremely fatigued? On awakening in the morning, are you stiff and exhausted? Is your memory impeded at times? These may be a few of the signs of fibromyalgia syndrome (FMS).
“I’ll always remember that morning in 1989 when I woke up paralyzed for 45 minutes,” says Ted.a Thus began Ted’s fight with fibromyalgia, which basically means “pain in the tendons, ligaments, and muscles.”
Perhaps a friend or a family member has FMS. How can you help? Or if you have it, what can be done? Being well-informed is a big step toward understanding and living with this problem. However, not everyone having the above symptoms necessarily has FMS.
According to the American College of Rheumatology, “the diagnosis of fibromyalgia is based on the person’s history of chronic widespread pain and the finding of tender points by the physician in specific locations.” There are also other symptoms, some similar to those of chronic fatigue syndrome (CFS).
Indeed, many people who have FMS also have CFS and other illnesses. Depression and abnormal anxiety are common among FMS sufferers, and it appears that FMS is generally the cause of these problems and not the result. FMS can be aggravated by such external conditions as too much or too little physical activity, a cold front moving in, a sleepless night, or extra stress.
Previously known by different names including fibrositis, FMS is not deforming or crippling, nor is it life threatening in itself. While it cannot be said with certainty that FMS is hereditary, it has been found in more than one member of some families. It affects millions of people and occurs in adults of all ages, with more women being affected than men.
The Cause of FMS
Various theories have been set forth as to the cause of FMS. It could be a virus or an imbalance of the neurotransmitter serotonin, which affects sleep, and an imbalance of such chemicals as endorphins, the body’s natural pain fighters. Research into these theories as well as others is ongoing.
Under a microscope the muscles of those with FMS appear healthy, but the energy-producing parts of the cells may not be functioning normally. Both the cause and the cure are unknown. In many cases the individual relates a particular physically or emotionally traumatic event to the onset of his or her symptoms, while for others the onset was more subtle.
Problems in Diagnosing FMS
Since most of its symptoms can be found in other conditions, Dr. Carla Ockley, from Canada, says: “FMS is not always the first thing looked for when a patient walks through the door with pain in his joints. If problems persist after several visits, then we probe deeper. When FMS is the diagnosis, I usually send the patient to a rheumatologist for confirmation.”
Until recently, however, there was no criterion for diagnosing FMS, so the problem was subjective—that is, perceptible only to the patient—and test results were normal. Thus, many doctors were unfamiliar with it. A woman named Rachel laments: “I went to different doctors for 25 years and spent thousands of dollars before my FMS was correctly diagnosed.”
Where, then, can help be found if you think you have fibromyalgia? In her book When Muscle Pain Won’t Go Away, Gayle Backstrom suggests contacting the local chapter of the Arthritis Foundation or a rheumatologist.
Thus far, no proven cure has been found for FMS, so treatment usually focuses on the symptoms. One of the main aspects is pain, which, like the other symptoms, differs from person to person and fluctuates from day to day even in the same person.
Adding to the problem, painkilling medication and some forms of treatment seem to lose their effectiveness over time. Gayle Backstrom suggests: “Often if you try them again later, you will once more experience a period of positive results.” Of course, your doctor should be consulted first. There is also the danger of side effects or addiction. Thus, “strong pain relievers should be avoided,” recommends the American College of Rheumatology.
A second major aspect is lack of vital sleep because of pain and other disturbances. Melanie uses a body pillow for the pain and the hum of a humidifier to offset outside noise. Other aids may include earplugs and a foam pad or a so-called eggcrate mattress topper.b Dr. Dwayne Ayers of North Carolina says: “Once I help improve their sleep, my patients respond better to the other treatments.”
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, “fibromyalgia patients may benefit from a combination of exercise, medication, physical therapy, and relaxation.” Other treatments could include massage therapy, stress management, and stretching exercises. Still, for someone experiencing constant pain or fatigue, exercising might seem impossible. So some recommend starting very slowly. And be sure to consult with your doctor before starting any exercise program.
In its issue of July 1997, the newsletter Fibromyalgia Network quotes Sharon Clark, an exercise physiologist and researcher in Portland, Oregon, as saying that if you cannot exercise for 20 or 30 minutes, “you can do six 5-minute walks per day and it will produce beneficial effects.” Moderate aerobic-type exercise increases the production of endorphins, improves sleep, and oxygenates the system and muscles.
Yet people differ, and they may be at various levels with their FMS. Elaine tells us: “A major accomplishment for me is to walk up and down my driveway once, while my good friend who also has FMS walks a mile.” This is not a case of “no pain, no gain,” but it clearly is a “do not give up” situation. Ted, who has CFS as well as FMS, says: “At first I could only use my exercise bike once a week for two or three minutes. Now I exercise for over 20 minutes three or four times a week. But it took me over four years to get there.”
The question of alternative approaches, such as acupuncture, chiropractic, and other kinds of treatment or the use of herbs or other diet supplements, has come up. While many assert that they have improved by using some of the above, others have not. Researchers are studying a number of these, but the results are still inconclusive.
Sometimes medications bring on hunger pains, or eating becomes a way of dealing with anxiety. However, more weight puts more stress on the muscles, which results in more pain. So in some cases, a doctor will recommend losing a few pounds.
A diagnosis of FMS may cause panic and anger. Yet, there are ways to deal with normal feelings like these so that no one is hurt. Grief is another common response. It is natural to grieve if we lose something as dear to us as our health.
When It Affects Your Work
Those with FMS may experience problems at work. Li had worked at her job for years, but doing so became more difficult because of her health. After talking with her employers, she was able to obtain a part-time job with the same company, and this lessened her stress. Also, to her surprise, she was given an hourly pay raise.
An occupational or physical therapist can help you look for ways to do your job with less stress on your body. Lisa found that using a desk chair with arms was helpful. It was recommended that Yvonne get not only a different chair but also another desk. But if a job change becomes necessary, there are agencies that can assist you.
How You Can Help
Each family member, even little ones, can learn about FMS and come to appreciate that even though the FMS sufferer looks healthy, he or she has a chronic illness that causes pain and fatigue. Good communication is also vital. Jennie states: “We have family discussions from time to time to see how each one can help.” A big part of successfully living with FMS is for the sufferer to learn to conserve energy while still getting things done. This might take some imagination, along with cooperation from others. Here again, an occupational therapist may prove helpful.
You can help a friend with FMS by being a nonjudgmental “hearing ear.” Try to keep discussions on a positive level, not letting fibromyalgia dominate the entire conversation. What should be said or not said? For suggestions, see the box on page 23. If you have FMS, try having more than one “hearing ear” so the same “ear” will not be worn out. And remember, not everyone will always want to hear about your FMS.
Adjusting to the Changes
In some cases we tend to chafe at changes, especially forced ones. But a physical therapist who has assisted about a hundred FMS sufferers tells us: “I try to get them to understand that they need to accept their situation. They also need to make some changes in their life and not let themselves get discouraged by temporary setbacks or flare-ups. Through self-management, knowledge, understanding, and exercise, they can control their FMS instead of letting it control them.”
Dave, who has FMS, says: “While the tendency is to do more on one of your better days, it might be wiser to bank your energy for the next day so that you do not end up spending the rest of the week in bed.” Still, at times you may feel that going to an event or a special affair is worth suffering for later. It is not always judicious to try to hide your FMS, especially from those who really care. And try to keep a sense of humor too. “I find that I usually sleep better after a good laugh or after watching a good comedy,” comments André.
Remember, too, that Jehovah does not compare your level of activity with that of others but appreciates the faith and deep love you demonstrate. (Mark 12:41-44) The important thing is to learn to live according to your limitations, being neither overprotective nor reckless. Count on Jehovah God to give you the wisdom and the strength to do the best you can. (2 Corinthians 4:16) And keep close to your heart the promise of a time soon to come when this earth will be a paradise where “no resident will say: ‘I am sick.’” (Isaiah 33:24) Yes, one day you will be healthy again!
a Some of the names have been changed.
b Awake! does not recommend any particular kind of sleeping aid, nor does it recommend any specific treatment for FMS.
[Box on page 22]
Comfort From the Bible
• Jehovah saves those crushed in spirit.—Psalm 34:18.
• Jehovah will sustain you.—Psalm 41:3.
• We do not give up.—2 Corinthians 4:16-18.
[Box on page 23]
What to Say
• It’s good to see you.
• It must have taken great effort for you to get here.
• I am here to help. I care about you.
• I appreciate what you are able to do.
What Not to Say
• I understand what you are going through.
• You look great. How can you be sick?
• Call me if you need anything.
[Diagram on page 21]
(For fully formatted text, see publication)
The black dots are some of the tender points looked for in diagnosing fibromyalgia
[Picture on page 24]
Good communication and family discussions are essential