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Symptoms | Systemic Lupus Erythematosus | SLE
What are the Signs and Symptoms of Lupus?
The first thing people with lupus usually notice is fatigue or extreme tiredness. Another very common symptom is pain. This can either affect the joints (with or without swelling), or it can affect the whole body.
No two people with lupus have exactly the same symptoms and most do not experience all of them. Some of the symptoms of lupus include:
- Fatigue (tiredness)
- Skin rashes – can be triggered by sunlight
- Joint aches – also known as arthralgia
- Joint swelling – also known as arthritis
- Hair loss
- Raynaud’s phenomenon – fingers and toes that turn white or blue in the cold
- Mouth ulcers or canker sores
- Swollen lymph nodes
- Pain in the chest when you take a deep breath in (pleurisy)
There is a huge spectrum in terms of the other symptoms a person with lupus can have. This depends on what tissues or organs their immune system decides to attack.
Even though there is a huge spectrum of symptoms of lupus, it usually shows a consistent pattern in a given person. When lupus flares it usually flares in predictable patterns. Think of it like this: imagine your lupus causes a rash, fatigue, sore joints and canker sores. When it flares, you’ll get tired, might get a rash, might get sore joints, and might get sores in the mouth. Once we get an understanding of your lupus it tends to keep doing the same thing. Your lupus is your lupus. So learn what your lupus looks like and what triggers your flares.
Lupus tends to be the worst in the first few years (2-5 years). It’s important to get through this time with as little damage to your body as possible.
In some people, the immune attack can target the organs. Examples are the kidneys, lungs, heart, or brain. At times, this can be very serious. In some people the immune system also attacks the blood cells.
One thing to remember about lupus is that chronic (long-term) inflammation is not good for the body. We now know that having lupus or other types of inflammatory arthritis is linked to heart disease. That means people with lupus have a higher chance of developing heart disease than people without lupus. So if you have lupus, make sure you do everything you can to reduce your risk of heart disease. The first thing you should do is to make sure your lupus is treated. Other things include keeping your blood pressure and cholesterol at healthy levels. If you have diabetes, keep your blood sugar under control. And if you are a smoker, quitting can be one of the best things you can do for your overall health.
Work and Lupus
The fatigue and pain caused by lupus can sometimes limit people’s normal activities, including work and family life. The fluctuating nature of the disease can also make your energy levels unpredictable. But there are things you can do to lessen the impact of lupus on your work and daily routine. People with lupus often have to learn to balance their activities with the need to rest and conserve energy. Try to keep your stress levels and daily activities balanced, and avoid too many “ups and downs.”
If you have a job where you sit for much of the day, adjusting features of your workplace can help make working with lupus more comfortable. For example, adjusting the position of chairs and desks for proper posture can help. You can also make adjustments to the seat of your vehicle to make driving more comfortable and reduce the stress on your joints.
Travel and Lupus
Traveling is still possible when you have lupus. It is best to be organized prior to your trip to ensure a smooth, comfortable, and enjoyable time. Be sure to take an extra supply of medication in case you have a flare while away from home. See our travel check list.
Sex and Lupus
The pain, fatigue, and emotional hardships of lupus can create barriers to sexual needs, ability and satisfaction. Take comfort knowing that sex and intimacy can be maintained in people with lupus … it can even draw partners closer together, especially through improved communication between mates.
For more information on intimacy and arthritis, a great book is Rheumatoid Arthritis: Plan to Win by Sheryl Koehn, Taysha Palmer and John Esdaile. Many of the tips can also be applied to people who have lupus, whether their joints are involved or not.
Pregnancy and Lupus
Pregnancy and lupus is a complicated topic. There are a few key points that you can think of:
- Pregnancy in women with lupus should be planned. It is best to make sure the disease is under good control for at least 6 months before getting pregnant.
- The best predictor on how someone will do in pregnancy is how they did with a previous pregnancy.
- There are certain medications that should be avoided in pregnancy. Discuss all medications with your doctor.
- Lupus can affect a pregnancy in many ways and you should always discuss family planning with your rheumatologist.
Read more – Treatment of Systemic Lupus Erythematosus