Living With Fibromyalgia

Living With Fibromyalgia

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    The goal of the National Fibromyalgia & Chronic Pain Association (NFMCPA) is to educate people affected by fibromyalgia and/or chronic pain illnesses and the medical community as well as the public, government agencies and scientists regarding the importance of timely diagnosis and appropriate treatment of fibromyalgia and overlapping conditions. This is done in order to gain the most positive outcome for people with fibromyalgia. In doing so, the organization unites people with fibromyalgia, policy makers and medical and scientific communities to transform lives through visionary support, advocacy, research and education to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.
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    The National Fibromyalgia & Chronic Pain Association (NFMCPA) is a 501(c)3 nonprofit organization. It works to support people who have chronic pain illnesses and their families and friends by contributing to caring, professional and community relationships. Through continuing education, networking with support groups and advocates, and affiliation with professional organizations, the members of the NFMCPA have a place to be informed, get involved and recognize achievements.

    The NFMCPA also addresses the controversies, prejudices and life-altering effect of fibromyalgia (FM) and overlapping conditions on millions of people. These issues, combined with the American College of Rheumatology’s FM diagnostic criteria that includes 42 symptoms in the patient medical assessment, which are all part of FM co-morbid conditions, are at the core of the formation of this association. The contributions of experienced leaders from other nonprofit FM organizations, including scientific research and doctor education, and patient outreach, including resources to live better with FM and raising awareness about the condition, are reflected in the organization.

    The organization brings together:
    • Science (research)
    • People with fibromyalgia
    • Healthcare providers
    • Thought leaders
    • Advocates
    • Complementary/alternative/integrative medicine (CAM/IM)
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    Most people with fibromyalgia (FM) quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a computer screen. Careful detective work is required by the person to note these associations and, where possible, to modify or eliminate them. Pacing of activities is important; doctors recommend that people use a stopwatch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else. For instance, if they are sitting down, they should get up and walk around -- or vice versa.
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    ARealAge answered

    Patients who bottle up their fibromyalgia pain and fatigue, along with the stress and emotions that can come with them, are only likely to make their fibro symptoms worse. Patients need to find people they can talk with about their condition. They should not rely solely on family and friends for support. They need to find a local or online fibromyalgia support group or schedule sessions with a behavioral therapist or counselor.

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    ADawn Marcus, Neurology, answered
    The most commonly used vitamins and minerals are vitamin C, vitamin E, and magnesium. While vitamin C and magnesium may have a helpful role for fibromyalgia, other nutritional products and supplements have been shown to be more likely to reduce fibromyalgia symptoms. It's important to know which nutritional products and supplements are most likely to help your fibromyalgia. While information on using these therapies is limited, you can use what is known to help identify those vitamins, minerals, and supplements that might be most worthwhile.
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    ADawn Marcus, Neurology, answered
    People with fibromyalgia are approximately twice as likely to report sexual difficulties as healthy adults. Among women with fibromyalgia, the most commonly reported sexual dysfunction complaints are decreased sexual desire, decreased sexual arousal, decreased orgasm, and pain with intercourse. Sexual dysfunction with fibromyalgia has also been linked to increased depression, so be sure to talk about any sexual and mood issues with your doctor.
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    ACeleste Cooper, Rheumatology, answered

    The primary problems or symptoms which can disrupt the life of the fibromyalgia patient are body-wide pain, sleep disturbance (fatigue, and disordered sleep), and cognitive deficit (problems with short term memory, word finding, and word and letter transposition).

    Other problems can be related to what most experts consider an upset in the brain and the way it talks to other important messengers in the body.  This disrupts the autonomic nervous system, the nervous system and the immune system.  This helps explain why certain disorders occur more frequently with fibromyalgia than in other painful conditions.

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    People with fibromyalgia who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare people with fibromyalgia disabled and most FM applicants are initially turned down by the Social Security Administration at the first review. However, each person needs to be evaluated on an individual basis before any recommendations for or against disability are made.
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    ADawn Marcus, Neurology, answered
    Women with fibromyalgia often worry that their symptoms will disrupt family life when they are unable to fulfill the physical, social, and emotional needs of others in the household. Missing important family events, such as a child's soccer game or a school play, can lead to frustration for both the person with fibromyalgia and other family members. However, having a family member with fibromyalgia doesn't result in a significant overall burden on others in the family. A small study published in the journal Rheumatology International compared people with fibromyalgia to healthy adults and found that problems with pain, fatigue, poor sleep, and loss of libido were not increased in relatives living with a family member who had fibromyalgia. The researchers concluded that living with someone with fibromyalgia does not cause significant health complaints, emotional distress, or reduced quality of life.

    One recent study from Indiana and Purdue Universities suggested that women with fibromyalgia do need to be aware that their symptoms may be affecting their marriage. The study compared marital satisfaction in husbands of women with fibromyalgia and a similar group of husbands of healthy women. Both groups had been married an average of 26 years. Although marital satisfaction was within the normal range for both groups, satisfaction was significantly lower among the spouses of women with fibromyalgia. Dissatisfaction was based on lack of social support and strain in domestic roles and sexual relationships, indicating that those with fibro must be sensitive to the burden the disease places on their spouses and make sure their needs are also being met.
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    ADawn Marcus, Neurology, answered
    Fibromyalgia can have a profound impact on everyday life. A national survey of women with fibromyalgia reported in the journal Women's Health Issues found that:
    • Two in five women with fibromyalgia had difficulty doing heavy household chores, such as cleaning floors, vacuuming, or raking leaves.
    • One in three had difficulty carrying a bag of groceries.
    • One in four had difficulty shopping.
    • Climbing stairs was a substantial problem for one in four women.
    • One in five had a significant problem walking one or two blocks.