Lupus is a chronic condition that can cause inflammation and widespread pain. Over-the-counter (OTC) medications, physical therapy, and getting enough sleep may help people manage severe lupus pain.
Lupus can cause inflammation and pain in any part of the body, including the skin, joints, and internal organs.
Although lupus is a chronic condition, it can bring about periods of remission, during which a person does not experience any symptoms. At other times, the disease may flare up, causing severe pain.
This article gives an overview of lupus pain, including insights into what lupus flares feel like, why symptoms may worsen at night, and how to manage them. It also explains when to go to the hospital for lupus pain and how to get additional support.
According to the Lupus Foundation of America (LFA), 65% of people with lupus say that chronic pain is the most challenging aspect of living with the condition.
The LFA summarizes research that suggests lupus pain is complex and cyclical.
Lupus causes an overactivation of a type of white blood cell called B cells. Primary pain occurs when B cells produce antibodies that cause tissue damage in different parts of the body, resulting in chronic, widespread pain.
This persistent pain can lead to nervous system inflammation, known as neuroinflammation, which can cause changes to the brain, spinal cord, and nerves.
Neuroinflammation can cause localized inflammatory responses, resulting in increased pain sensitivity and symptoms such as:
A lupus flare is a measurable increase in disease activity that triggers new lupus symptoms or exacerbates existing ones. Certain triggers, such as overworking, sun exposure, and infections,
During an active lupus flare, many people experience joint pain, headaches, and chest pain when breathing deeply.
Other common symptoms of a lupus flare include:
- ongoing fever that is not due to an infection
- increased fatigue
- skin rashes, particularly on the nose and cheeks
- sores or ulcers in the mouth or nose
- swelling in the hands and feet
- sensitivity to sunlight
- hair loss
Why does lupus pain feel worse at night?
A 2017 article investigated sleep quality among individuals with systemic lupus erythematosus (SLE), the
The article’s authors collected data from 205 people with SLE in Japan and found that 62.9% experienced poor sleep quality. They suggested that pain is a significant contributor and managing SLE symptoms may help improve sleep quality.
Factors that may increase pain levels at night include:
- a natural drop in levels of the anti-inflammatory hormone cortisol
- a lower nighttime pain threshold due to the absence of daytime stimuli that can distract from pain
- joint stiffness due to lying still for long periods
Sleep issues can also cause daytime fatigue, which can exacerbate pain. A tired brain cannot dampen pain signals, resulting in the perception of worse pain.
Lupus pain is a symptom of inflammation in the body’s organs and tissues, so it will typically last as long as the lupus flare itself.
Lupus flares
Doctors can adjust a person’s treatment plan if they show early signs of a flare-up to try and prevent the flare or reduce its severity. Early signs of an oncoming flare-up may include:
- dizziness
- headaches
- increasing tiredness
- stomach aches
- rash
- fever
- pain
The LFA recommends the following strategies for managing lupus pain:
- taking prescription or OTC pain relief
- physical therapy
- applying heat to painful joints and muscles
- exercising daily under the guidance of a healthcare professional
- avoiding habits that may cause pain, such as sitting in one position for too long
- getting enough sleep
- treating mental health issues, such as stress, anxiety, and depression, as these can worsen pain
- trying alternative treatments, such as acupressure, acupuncture, or biofeedback
- trying relaxing activities, such as meditation, yoga, or tai chi, to distract from pain
Doctors may also prescribe treatments, such as immunosuppressants, to help a person control and treat a lupus flare.
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People with lupus need to seek urgent medical help if they experience the following symptoms:
- shortness of breath
- chest pain
- severe stomach pain
- seizures
- new onset of fever or a worsening fever
- confusion or mood changes
- excessive bruising or bleeding
- a combination of symptoms, such as a severe headache with a stiff neck and fever
The LFA offers a resource called LupusConnect. This online platform allows community members to share their experiences of living with lupus.
The platform provides emotional support for users while offering practical tips for living with and managing their condition.
The LFA website also offers a search function where individuals can find out about relevant services, programs, and events in their local area.
Here are some frequently asked questions about lupus.
How long do lupus flares last?
How long a lupus flare lasts can be different for each person. Symptoms may come and go
What does a lupus flare onsetting feel like?
Before a lupus flare, a person may experience symptoms such as pain, increased tiredness, severe headache, dizziness, and fever. They may also develop a rash, and any existing symptoms may worsen.
What does active lupus feel like?
Active lupus can cause symptoms such as headaches, chest pain when breathing, joint pain or swelling, light sensitivity, and fever. It can also cause skin symptoms, such as a butterfly-shaped rash on the nose and cheeks.
Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body. People with the condition may experience periods of remission in between active disease flares. During flares, lupus pain may be severe.
Treating symptoms may involve taking pain medications and immunosuppressant drugs. Other management options may include lifestyle changes, such as regular exercise, following a nutritious diet, and getting enough sleep.
A person needs to visit the hospital if they experience severe pain in their abdomen or chest or if their lupus pain accompanies other concerning symptoms.