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Living with Lupus

LupusCorner Insights | Community Data and Survey Feedback

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The LupusCorner community provides great insight into the lupus journey. Find out what the latest data and feedback on physical inactivity, depression, and lupus headaches illustrates!

Depression and problems with keeping up physical activity are issues that many people with lupus face. Unfortunately, many lupus symptoms, such as lupus headaches, can make both depression and inactivity worse! We asked our LupusCorner community on their personal thoughts regarding the connection.

If you are interested in participating, you can find our surveys on our LupusCorner Insights platform, or directly on our social media pages.

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Lupus Headaches: Causes, Types, and Treatments

Headaches are a common symptom of systemic lupus erythematosus (SLE). Previous studies have varied on their expected prevalence, but up to 78% of people with lupus experience headaches. These headaches can come in many forms, can be very frequent, and can be very painful.

Unfortunately, much remains unknown. It is unclear if headaches in lupus are actually different from headaches in otherwise healthy people, if they actually occur at higher frequencies in people with lupus, or if they require special treatment. Here’s what the LupusCorner community had to say:

SLE causes or leads to many conditions that are known to contribute to headaches. Many of these symptoms are common for Lupus Warriors.

While there are many different types of headaches, they are typically classified into a few basic typesPrimary and Secondary.

Primary headaches are an overload or malfunction in the pain receptors in the head. Secondary headaches are similar, but the pain is a symptom of some other issue in the body. These two types can be further broken down into 4 main types.

Because they share similar causes, headaches, nausea, brain fog, and fatigue are often linked together, and people with lupus frequently have more than one ailment at a time. This also means that many headaches can be alleviated or prevented through proper hydration, a good night’s sleep, and stress-relief techniques. Headaches also generally go away with time, though pain-managing medications can help reduce the intensity of the pain enough to live with.

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Physical Inactivity and Depression

Depression and problems with keeping up physical activity are issues that many people with lupus face. Unfortunately, many lupus symptoms can make both depression and inactivity worse!

Lupus Warriors often have light sensitivities, fatigue, and pain, which prevent them from being active. Depression and inactivity (also known as a sedentary lifestyle) do not occur in a vacuum. In fact, depression is well-known to affect physical activity. On days where it’s hard to get out of bed, working out is can be a tall order. But, being physically active can help battle symptoms of depression.

Depression is very common for people with lupus. Depending on the study and how they define depression, the rates of depression can range from 50% to 93%. When people with lupus have a low level of physical activity, they are three times more likely to report that they have depression down the line – even years later.

According to several studies on people with SLE, a lack of physical activity is a big indicator that depression will develop down the line within two years. If someone no longer finds joy in an activity, it can be difficult to stay motivated. This leads to a frustrating feedback loop that can leave people with lupus stuck in a bad situation.

Other symptoms of lupus, of course, contribute to depression. In a study, 72 people with lupus were given tests for fatigue, depression, anxiety, and symptom intensity. The worse the physical symptoms were, the worse the depression was.

60% of people with lupus are not getting enough exercise, according to the standards of the WHO. Regular exercise is well-known to help alleviate symptoms of lupus and symptoms of depression.

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And you can see the current list of quizzes and polls on LupusCorner Insights

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