Hope Foundation - Creating an awareness of Lupus, Sickle Cell and Arthritis

I was diagnosed with systemic lupus. Are there any do's or don'ts with regard to:

Diet - There is no such thing as a lupus diet. People with lupus should consider following a diet that is low in fat, low in sodium, high in fiber, low in refined sugars. That is also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your lupus symptoms, you should certainly avoid eating those foods.
Alfalfa sprouts are in the legume family and contain an amino acid, L-canavanine. It can stimulate the immune system in people with lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts. Check labels on health food packaging as alfalfa may also be found as an ingredient in food products.

Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided.

Exercise - Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being.

Fatigue - When your lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease. 

Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you do need to gradually resume your normal activities slowly over a period of time. This may require naps during the day-a brief cat nap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you don't exhaust yourself.

Medications - Be sure and take your medications as prescribed by your doctor. If you develop any side effects make sure you let your doctor know what they are. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. Also, ask how long before you should see the effects of the medication and if you find it's not working within the time frame, let your doctor know.

Work schedule -The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability.

Living with Lupus

  • I was diagnosed with systemic lupus. Are there any do's or don'ts with regard to: +

    Diet - There is no such thing as a lupus diet. People with lupus should consider following a diet that is Read More
  • Flares. How can I tell if my lupus is active? +

    When a lupus flare occurs, people will usually notice a return of the symptoms they experienced previously, but sometimes they Read More
  • When should I call the Doctor? +

    You should call the doctor about any change in symptoms or worsening of your lupus as soon as possible. You Read More
  • How long will a flare last? How long will a remission last? +

    There is no way of predicting how long a flare will last when it comes, nor is there any way Read More
  • I've had lupus for 2 years and haven't had a remission yet. Is this possible? +

    Yes. Lupus takes a highly variable course. Some people will have a course where their lupus flares-up and then simmers Read More
  • What can I expect in the future? Will I be able to have a family? +

    Unless there is moderate to severe organ involvement or if a person must take immunosuppressive/immunomodulating medications that would place the Read More
  • Will I be able to continue working full-time? +

    Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there Read More
  • Will I live long enough to see my children grow up? +

    The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal lifespan Read More
  • Will I become crippled and end up in a wheelchair? +

    People are frequently concerned that the arthritis associated with lupus will result in crippling deformities. Lupus arthritis generally does not Read More
  • Is there anything I can do to alleviate the pain when the pills don't seem to work and I can't get in to see the doctor for a few days? +

    Some people find relief from heat, some people find relief from cold. Others find that if they can find a Read More
  • I have heard that dental fillings may trigger lupus. Is there anything to this? +

    At the present time, we do not have any scientific data that indicates that dental fillings may act as a Read More
  • I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair? +

    One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association Read More
  • Can lupus cause memory problems? +

    At some point during the course of their lupus, up to 50% of lupus patients describe feelings of confusion, fatigue, Read More
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