Information provided by the National Institute of Arthritis and Musculoskeletal and Skin Diseases
A diagnosis of lupus can have a significant impact on quality of life, including the ability to work. Research on work loss associated with lupus, funded in part by the NIAMS, estimated that almost three-quarters of the study’s 982 participants would stop working before the usual age of retirement, and that half of those who had jobs when they were diagnosed (during their mid-thirties, on average) would no longer be working by the age of 50. The researchers determined that demographics and work characteristics (the physical and psychological demands of jobs and the degree of control over assignments and work environment) had the most impact on work loss.
Despite the symptoms of lupus and the potential side effects of treatment, people with lupus can maintain a high quality of life overall. One key to managing lupus is to understand the disease and its impact. Learning to recognize the warning signs of a flare can help the patient take steps to ward it off or reduce its intensity. Many people with lupus experience increased fatigue, pain, a rash, fever, abdominal discomfort, headache, or dizziness just before a flare. Developing strategies to prevent flares can also be helpful, such as learning to recognize your warning signals and maintaining good communication with your doctor.
It is also important for people with lupus to receive regular health care, instead of seeking help only when symptoms worsen. Results from a medical exam and laboratory work on a regular basis allow the doctor to note any changes and to identify and treat flares early. The treatment plan, which is tailored to the individual’s specific needs and circumstances, can be adjusted accordingly. If new symptoms are identified early, treatments may be more effective. Other concerns also can be addressed at regular checkups. The doctor can provide guidance about such issues as the use of sunscreens, stress reduction, and the importance of structured exercise and rest, as well as birth control and family planning. Because people with lupus can be more susceptible to infections, the doctor may recommend yearly influenza vaccinations or pneumococcal vaccinations for some patients.
Women with lupus should receive regular preventive health care, such as gynecological and breast examinations. Both men and women need to have their blood pressure and cholesterol checked on a regular basis. It is recommended that people who take corticosteroids or antimalarias have regular eye exams to screen for and treat eye problems.
People with lupus should also be aware of their increased risk of premature cardiovascular disease. This makes healthy lifestyle choices such as eating well, exercising regularly, and not smoking particularly important for people with lupus.
Warning Signs of a Flare
- Increased fatigue
- Pain
- Rash
- Fever
- Abdominal discomfort
- Headache
- Dizziness.
Preventing a Flare
- Learn to recognize your warning signals.
- Maintain good communication with your doctor.
Staying healthy requires extra effort and care for people with lupus, so it becomes especially important to develop strategies for maintaining wellness. Wellness involves close attention to the body, mind, and spirit. One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic disorder. Effective stress management varies from person to person. Some approaches that may help include exercise, relaxation techniques such as meditation, and setting priorities for spending time and energy.
Developing and maintaining a good support system is also important. A support system may include family, friends, medical professionals, community organizations, and support groups. Participating in a support group can provide emotional help, boost self-esteem and morale, and help develop or improve coping skills.
Tips for Working With Your Doctor
- Seek a health care provider who is familiar with lupus and who will listen to and address your concerns.
- Provide complete, accurate medical information.
- Make a list of your questions and concerns in advance.
- Be honest and share your point of view with the health care provider.
- Ask for clarification or further explanation if you need it.
- Talk to other members of the health care team, such as nurses, therapists, or pharmacists.
- Do not hesitate to discuss sensitive subjects (for example, birth control, and intimacy) with your doctor.
- Discuss any treatment changes with your doctor before making them.
Learning more about lupus may also help. Studies have shown that patients who are well-informed and participate actively in their own care experience less pain, make fewer visits to the doctor, build self-confidence, and remain more active.
For more information on lupus and other musculoskeletal health issues, visit www.niams.nih.gov. Join us next month for part 6 of the series on lupus.
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