Have you ever felt a strange, cool, or tingly sensation in your arms or legs and wondered, “Could this be related to lupus?” When most people think of lupus, they picture common symptoms like joint pain, hair loss, or the well-known butterfly rash across the face. However, these are just the most common symptoms of lupus and especially of the most common form of lupus, systemic lupus erythematosus (SLE). Not every symptom of lupus is easy to spot or make sense of. Some signs are strange or rare or may even seem unrelated to lupus at first.

In this article, we’ll explore some of the more unusual and uncommon lupus symptoms. These are the symptoms that don’t get talked about as much. Some of these may be caused by lupus itself, while others may be side effects of treatment or due to related medical conditions.

Unusual Lupus Symptoms That May Surprise You

Lupus is a chronic (long-term) autoimmune condition. This means that the immune system — which normally protects the body against viruses and bacteria — starts attacking healthy tissues. This can cause swelling, pain, and damage in many parts of the body, including the joints, skin, organs, and nervous system.

While it’s common for people with lupus to have fatigue (extreme tiredness), joint pain, mouth sores, and skin rashes, others may notice strange lupus symptoms that come and go or show up during a lupus flare. Some less common lupus symptoms include:

• Chest pain, especially when breathing deeply
• Problems with the heart, kidneys, or lungs
• Increased sun sensitivity
• Blood clotting problems
• Eye damage
• Raynaud’s phenomenon (fingers or toes turning blue or white or feeling numb)

These symptoms can be related to lupus, but they can also be caused by medications or other health problems.

Fainting and Seizures

Some people with lupus experience fainting and dizziness, and at times they may feel like they might pass out. These events can be scary and confusing. In some cases, lupus and fainting may be linked, but not always.

Fainting can be caused by problems with blood pressure, anemia (low red blood cells), or changes in the nervous system. In rare cases, fainting might happen as part of a seizure. This can happen in people with neuropsychiatric lupus (NPSLE) — a type of lupus that affects the brain and nerves. NPSLE affects about two-thirds of people with SLE.

Seizures are among the more serious symptoms of neuropsychiatric lupus, affecting about 2 percent to 8 percent of people with SLE. They may cause a person to lose awareness, shake, or collapse. Some seizures are harder to notice and may look like staring spells or brief confusion. Seizures from lupus may be more likely to happen during a flare-up. Scientists think they may be linked to inflammation in the brain or autoantibodies — immune system proteins that attack the body’s own cells by mistake — that affect nerve cells.

If you faint or have symptoms that seem like they may indicate a seizure, tell your doctor right away. These issues can be treated, but it’s important to find the cause as soon as possible.

Tremors and Shakiness

Some people with lupus notice uncontrollable shaking or tremors, often in the hands, arms, or legs. These movements happen without your control and can feel like light vibrations, muscle twitching, or more noticeable shaking.

Tremors may occur during a lupus flare-up or in people with neuropsychiatric lupus. Scientists think they happen when autoantibodies attack the nerve cells in the brain that control movement. Lupus can also cause other movement problems, such as chorea, which involves unpredictable, jerky movements.

Sometimes, medications used to treat lupus can cause tremors as a side effect. Fatigue, stress, or too much caffeine can make the shaking worse.

Difficulty Swallowing or Chewing

Some people with lupus experience difficulty swallowing or chewing. These issues might seem small at first, but they can lead to pain, weight loss, or even choking.

Jaw pain can make chewing feel tiring or even painful. This is because lupus can affect the joints and muscles in your jaw, just like it does in your hands or knees. As a result, this can lead to stiffness, popping sounds, or soreness while eating. This condition is often linked to temporomandibular disorders (TMDs) — conditions that affect the joints and muscles connecting your jaw to your skull.

People with SLE can also experience dysphagia (swallowing problems). As many as 13 percent of people with SLE experience this symptom. It can feel like food is stuck in your throat or chest, or cause coughing while eating. Swallowing can become difficult if lupus affects the muscles of the esophagus (the tube that connects your mouth to your stomach). This can also happen as a result of inflammation in the nerves or blood vessels in your digestive system.

If you notice pain, trouble swallowing, or tiredness while eating, talk to your healthcare team. They can make changes to your lupus treatment plan, recommend special exercises, or refer you to a speech therapist to improve how your muscles move.

Digestive System Symptoms

When you think of the classic lupus symptoms, digestive system symptoms may not be the first to come to mind. However, as many as 40 percent to 60 percent of people with SLE will have some type of gastrointestinal (digestive) issue at some point.

Lupus can affect any part of the digestive system, from the mouth to the stomach, intestines, or anus. Mouth ulcerations (sores) are common, and symptoms like nausea, abdominal (belly) pain, and heartburn are typical. These may come from lupus itself, or they may be side effects of medication, like nonsteroidal anti-inflammatory drugs (NSAIDs) or steroids. Other digestive symptoms that are less common may include:

• Inflammation in the intestines
• Pancreatitis (inflammation in the pancreas)
• Unexplained weight loss
• Liver inflammation or abnormal liver tests

What Are the Subtler Symptoms of Lupus?

Some lupus symptoms are hard to describe or easy to mistake for something else. They can come and go or change over time. They may also be caused by stress, other health problems, or even side effects from medications. Examples of subtler symptoms include:

• Ongoing aches and pains with no clear cause
• Trouble sleeping
• Fevers
• Sensitivity to cold or light
• Weakness, shakiness, or feeling “off”
• Brain fog (difficulty focusing, remembering, or thinking)

Brain fog can be especially frustrating for people with lupus. It can affect your daily life and make work, school, or simple tasks harder. One MyLupusTeam member recalled, “My brain fog comes and goes, especially when I don’t get enough sleep.”

Unfortunately, unlike other symptoms, brain fog doesn’t always improve with treatment. Managing it often takes time, patience, and extra support from your healthcare team.

Always let your doctor know about all of your symptoms, even if they seem small. They may be able to help uncover how lupus is affecting your body and offer adjustments to your treatment plan to help.

What Are the Hidden Symptoms of Lupus?

Sometimes, lupus affects people in ways that aren’t visible or easy to talk about. Living with a chronic illness, dealing with daily pain, and facing uncertainty can take a toll on your overall well-being. As a result, emotional and mental health issues are common in people with lupus. Studies show that up to 25 percent of people with lupus have major depression and 37 percent have major anxiety. Depression may also be a side effect of corticosteroid treatment. People with lupus are frequently given long-term treatment with corticosteroids, and it can be difficult to determine if the depression is due to the illness or to the treatment.

Lupus can also cause physical problems that are hard to detect on the surface, such as:

• Kidney disease or kidney problems, such as lupus nephritis
• Hypertension (high blood pressure) due to the involvement of the cardiovascular system, lupus nephritis, NSAIDs, or corticosteroid treatment
• Chronic inflammation in the heart, lungs, or brain
• Other cognitive (brain) changes, like memory loss or confusion

It’s easy to miss these symptoms or blame them on other causes. That’s why it’s important to report all changes — even mental and emotional ones — to your healthcare team. Whole-body healing requires tending to your physical, psychological, and cognitive needs.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

What unusual or uncommon lupus symptoms have you experienced? Were any of your symptoms attributed to another health condition? Share your experience in the comments below, or start a conversation by posting to your Activities page.