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Living with Lupus

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Updated April 09, 2014

Living with Lupus:

Those who have been newly diagnosed with lupus may find themselves shocked at first, relieved, then, knowing what they have, and finally confused as to what their next steps will be. Find out here.

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Newly diagnosed:

“I have what?” can be the intial reaction of most people when they hear a diagnosis of lupus. And because the general population knows little of the disease, this is no surprise. Most patients only know they’ve been suffering with vague, painful symptoms that come and go, with no set pattern of predictability. Strangely enough, most lupus flares are triggered by something (causes vary) and sometimes follow a pattern. Understanding what triggers flares and how to tell when one is coming on (and possibly lessening or preventing it) is a major key to living with this illness and maintaining a high quality of life.

Regular care:

One of the most important things patients can do to help themselves is seek regular medical attention once lupus has been diagnosed, not just when symptoms worsen. Most people see a specialist, usually a rheumatologist, rather than a general practice physician.

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In either case, your doctor can help you find a treatment plan that works for you and may also help you recognize your particular warning signs of a flare. These may be different for everyone, however, many lupus sufferers can experience increased fatigue, dizziness, headaches, pain, rashes, stiffness, abdominal pain, or fever just before a flare. Your doctor may also be able to help you predict flares based on regular blood work and examinations.

Preventative medicine:

Because lupus is a disease that impacts your immune system, it is important to see your doctor for regular preventive care, such as gynecological exams and vaccinations to prevent infections that could turn into serious problems for those with lupus. Taking an active role in your care with your doctor has been proven to help lupus patients lessen pain, make fewer sick visits to the doctor, and remain more active.

Initial strategies:

It may be difficult at first to realize you’re dealing with a chronic illness with no absolute causes or cures. As with other chronic diseases, though, just being diagnosed can be a great relief. After that, lupus patients should try to develop strategies for wellness. These can include stress management through meditation, relaxation therapy, mild to moderate exercise, and continuing with activities you enjoy as much as you’re able, and developing a support network. This network can consist of friends, family, online networks, community groups, or organized support groups for lupus.

Source:
Living with Lupus, Lupus Foundation of America. June 2007.
Health Topics, "The Many Shades of Lupus: Information for Multicultural Communities." National Institute of Arthritis and Musculoskeletal and Skin Diseases, Aug. 2001.

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