Lupus Facts

02/13/02

Preventing Fatigue Due to Lupus

Fatigue is a very common complaint of all people with systemic lupus erythematosus (SLE), even when no other symptoms of active disease are present. The fatigue of lupus isn’t just being tired. You may feel an extreme fatigue that interferes with many aspects of your daily life. You may find that you are unable to participate in your normal pattern of daily activities, such as working, caring for your family and home, or participating in social activities. The exact cause of this fatigue is not known.

Your doctor and nurse will probably ask you about your lifestyle and patterns of daily living and activity. They will also evaluate your overall fitness, health, nutrition, and ability to handle stress. Your doctor or nurse will then be able to advise you about how your fatigue can be reduced. It is important to remember that getting enough rest, maintaining physical fitness, and keeping stress under control are absolutely necessary for anyone with lupus.

Changes in your lifestyle and patterns of daily living and activity may not be easy to accept. In addition, the changes necessary for you to cope with your disease today may be different from the changes you may have to make later as your disease changes. A positive attitude and a well-thought-out, but flexible, plan of action will increase the chances that you can make these changes successfully.

Caring For Yourself

	Get enough sleep. You may be able to get by on 8 hours a night, or you may need more.
	Plan for additional rest periods throughout the day, as needed. Do not exhaust yourself.
	Getting enough rest does not mean no activity at all. A well-designed exercise program is important to maintaining strength, endurance, and overall fitness.
	Every week, make a simple plan of your work and activities. The plan can help you organize the events of your life and ensure that you have a good balance of rest and activity.
	Each day, review your plan and decide if you are physically up to the activities for that day. Be flexible; if you don’t have the strength to do an activity today, do it another time.
	Don’t try to complete a large task or project all at one time; divide it into several steps.
	Eat a well-balanced diet.
	Dealing with stressful issues and problems takes a lot of energy. If you feel stressed out, talk with your doctor or nurse. They may be able to provide you with help for your problem or direct you to someone else who can.

(NIAMS, 1999, http://www.niams.nih.gov/hi/topics/lupus/lupusguide/chppis2.htm)

Exercise and Lupus

Because lupus causes joint pain and inflammation, muscle pain, and fatigue, the very thought of exercising can be a challenge. In addition, because lupus is a disease that requires a large amount of rest, you might wonder why exercise is so important. Although rest is important in managing fatigue, too much rest can be harmful to muscles, bones, joints, and overall fitness. Keeping fit through an exercise program planned just for you can help you feel better, both mentally and physically. There are many types of exercises that are appropriate for lupus patients, such as swimming and walking. Regular exercise will

	increase your muscle strength,
	help prevent your joints from getting stiff,
	help prevent osteoporosis,
	help keep your weight under control,
	improve your cardiovascular health, and
	help reduce stress.

Getting Started Can Be the Hardest Part

	Check with your doctor before you start any type of exercise program. He or she can evaluate your overall condition and fitness and recommend a type and level of activity that are right for you.
	Try to find someone to exercise with; it can be a lot more fun.
	Start slowly. Chart your progress so you can see and take pride in your accomplishment.
	Change your exercise activities depending on how you feel. If you’re not up to it on one day, that’s okay. Try to go back to your program the next day.

For a healthy person, achieving physical fitness can be a lot of hard work. For a person with lupus, such an achievement is really something to be proud of!

(NIAMS, 1999, http://www.niams.nih.gov/hi/topics/lupus/lupusguide/chppis3.htm)

Joint Function and Lupus

Joint pain or arthritis is experienced by 95% of people with lupus at some time during the course of their disease. In fact, joint pain is usually the first symptom of lupus. Unlike rheumatoid arthritis, the arthritis of lupus tends to be temporary. It is also less damaging to the joints. The joints most commonly involved are those of the fingers, wrists, and knees. Elbows, ankles, and shoulders are not affected as often. When a particular joint is affected on one side of the body, the same joint on the other side of the body is usually affected as well.

Arthralgia: Arthralgia means “joint pain.” Morning stiffness, swelling, or heat in the joints can also occur.

Myalgia or myositis: Myalgia means “pain in the muscles”; myositis means “inflammation of the muscle.” These may include overall muscle pain and tenderness, especially in the upper arms and upper legs. They are common in 40–80% of people with lupus, especially during a flare.

Other joint complications: Several types of joint complications occur rarely in lupus. They include osteonecrosis (damage to the hip joint that leads to severe arthritis), development of nodules in the small joints of the hands, tendinitis, tendon rupture, and carpal tunnel syndrome. Your doctor or nurse can give you more information about these problems.

Taking Care of Your Joints

If you have joint or muscle problems, the first goal is to keep pain at a tolerable level. You can do this in several ways:

	Apply heat or cold to the affected joints.
	Support the affected joints with pillows, blankets, or splints (if ordered by your doctor).
	Rest the affected joints as much as possible and keep them elevated to help reduce swelling.
	Follow your doctor’s plan for managing pain and using anti-inflammation medication.

Your second goal is to maintain joint function and increase muscle strength. You can do this by using the following techniques:

	Take warm showers or baths to lessen stiffness.
	Don’t put any weight on an acutely inflamed joint. Sit or lie down. Avoid strenuous activity and avoid any activity that causes increased pain, swelling, tenderness, or heat to the affected joint.
	Ask a physical therapist or trained family member or friend to gently move the inflamed joint in all the directions it can be moved (this is called passive range of motion [ROM]).This will help prevent stiffness. Your doctor can let you know when and how often this should be done.
	Gently move the affected joint yourself when the acute inflammation is over.
	Talk with your doctor or nurse about physical or occupational therapy if you are having trouble regaining joint strength and motion or if activities of daily living (cooking, cleaning, bathing, etc.) are still difficult.
	Hire a housekeeper or someone to help care for yourself or your children until you feel better.

When you are feeling better and your physical condition has improved, your doctor will probably recommend an exercise program tailored to your needs. Although rest and protecting joint function are extremely important, exercise is also necessary to keep muscles, bones, joints, and tendons strong and healthy. A well-planned exercise program combined with other aspects of your care will help you maintain joint function and improve your overall fitness.

(NIAMS, 1999, http://www.niams.nih.gov/hi/topics/lupus/lupusguide/chppis6.htm)

Skin Care and Lupus

Skin problems are very common in people with lupus. Some skin rashes and sores (also called lesions or ulcers) are very specific to lupus, while others can occur in other diseases as well. A sensitivity to and too much exposure to the ultraviolet (UV) rays of sun and some types of artificial light are responsible for aggravating some rashes and lesions. Many types of skin conditions are common in lupus.

Butterfly rash: This rash over the nose and cheeks can range from a faint blush to a rash that is very severe, with scaling. It is very sensitive to light and appears to gets worse when skin is exposed to sun or certain types of artificial light. The rash may be permanent or may come and go.

Discoid lesions: These scarring, coin-shaped lesions are seen on areas of the skin that have been exposed to UV light. They may also occur on the scalp and produce a scarring, localized baldness that is permanent.

Subacute cutaneous lesions: These nonscarring, red, coin-shaped lesions are very sensitive to UV light. They can appear scaly and can mimic the lesions seen in psoriasis. They may occur only on the face or cover large areas of the body.

Mucous membrane lesions: Mouth ulcers are sometimes seen in lupus patients. Nose and vaginal ulcers may also occur. These lesions are usually painless.

Hair loss: In addition to losing hair because of discoid lesions, some lupus patients may develop a temporary, generalized hair loss followed by the growth of new hair. Hair loss may also be caused by infection or by use of corticosteroids or other lupus medications. A severe lupus flare could result in defective hair growth, causing the hair to be fragile and break easily.

Vasculitis: This is a condition in which the blood vessels become inflamed. Very small blood vessels can break and cause bleeding into the tissues, resulting in tiny, reddish-purple spots on the skin known as petechiae (pe-teke-ee-ah). Larger spots are called purpura and may look like a bruise. Vasculitis can also cause blood clots to form, skinulcers to develop, and small black areas to appear around fingers and toenails. These black areas are a sign of serious tissue damage. If they begin to develop, see your doctor immediately.

Raynaud’s phenomenon: This is a condition in which the blood vessels of the fingers and toes react in an extreme way to cold or stress. They suddenly get very narrow (vasoconstrict). This decreases the blood supply going through the vessel. As a result, the fingers and toes become cold and can become pale or bluish. Pain or tingling can occur when the hands and feet warm up and circulation returns to normal.

Drug-induced skin changes: Some drugs used to treat lupus, such as corticosteroids, immunosuppressives, and antineoplastics, can affect the skin. Your doctor or nurse will review these side effects with you if one of these drugs has been prescribed.

Caring For Yourself

	Reduce your exposure to the sun and to some sources of artificial light (especially fluorescent and halogen bulbs). The skin of people with lupus is very sensitive to the UV light that comes from these sources.
	Limit outdoor activity between the hours of 10 a.m. and 4 p.m. This may mean a big change in your lifestyle if you work or play outdoors a lot.
	Wear a sunscreen on exposed areas of skin. It should have a sun protection factor (SPF) of 15 or higher. Be sure that the sunscreen protects against both UVB and UVA rays.
	Wear sunscreen all year round and on cloudy days as well as on sunny days. Also wear it indoors if you spend a lot of time in a room with many windows (glass does not filter out UV rays).
	Wear protective clothing, such as hats with wide brims and clothing made of tightly woven material. Thin, loosely woven material allows UV light to penetrate to the skin.
	Be aware of fluorescent light and halogen lamps. They can be found in many places and include floor lamps, overhead lights, photo-copiers, and slide projectors. Sunscreen and protective clothing can help.
	Tell your doctor immediately if any rash or sore appears or gets worse.
	If your doctor prescribes a medication for your skin condition, be sure to take it as directed.
	Try rinsing your mouth with salt water and eating soft foods if you have mouth ulcers. A number of other treatments and preparations are available to treat mouth ulcers as well as those in the nose and vagina.
	Avoid preparations or medications you know will make your skin condition worse. These might include hair dyes, skin creams, certain drugs that can make you more sensitive to the sun (for example, tetracyclines or diuretics), and things you are allergic to.
	It’s okay to wear makeup, but try hypoallergenic brands. A brand that also includes UV protection would be good to use.
	If you have Raynaud’s phenomenon, dress warmly in cold weather. Pay particular attention to keeping your hands and feet warm. Keeping your home warm will also help prevent an attack. Avoid smoking, caffeine, and stress — all of these can contribute to Raynaud’s phenomenon.
	If you have trouble maintaining a positive attitude about your appearance or your lupus, call your doctor or nurse to discuss your feelings and concerns.

(NIAMS, 1999, http://www.niams.nih.gov/hi/topics/lupus/lupusguide/chppis7.htm)

This site was last updated 02/13/02

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