“Are tremors a part of lupus? I have tremors really badly, especially when waking up in bed and when I’m resting. It’s worse when I’m tired,” one MyLupusTeam member shared. Another replied, “I get it, too. I mostly feel it in my upper body when waking up or resting. It’s a vibration-type shaking, not like shaky hands that someone else could see.”

Whether you’re feeling nervous or you’ve just had your morning cup of coffee, it’s normal for your muscles to be a little shaky from time to time. But what does it mean when you’ve noticed tremors, shakes, or uncontrollable movements for an extended time? Some MyLupusTeam members have started to wonder: Does lupus cause tremors?

In this article, we’ll discuss what tremors are and why they might happen when living with lupus. We’ll also cover what to do if your tremors are interfering with your daily life and how you can manage them.

What Are Tremors?

Tremors are involuntary or uncontrollable muscle movements that cause parts of the body, such as your arms, hands, or legs, to shake. These movements are rhythmic, meaning they follow a pattern or rhythm.

Everyone has a little bit of a natural tremor, called a physiologic tremor. It’s a very slight shaking that usually isn’t noticeable. Tremors caused by health conditions are often more noticeable. They may be constant, or they can come and go throughout the day. Some people have severe tremors that make it hard to go about their daily lives.

Anyone can develop tremors at any age, but they’re more likely to affect older adults. People of all genders have the same risk of tremors. You may notice your hands or arms shaking only when you’re deliberately moving (action tremor) or while you’re relaxed (resting tremor). Tremors can be worse if you’re stressed or sleep-deprived.

Several conditions can cause these shaky, unintentional movements, like Parkinson’s disease, multiple sclerosis, or a stroke. You may also notice tremors if:

• You’re nervous, anxious, or feeling any strong emotion.
• You have low glucose (blood sugar) levels.
• You drink too much caffeine.
• Kidney or liver failure causes waste buildup that affects the nervous system.

Can Lupus Cause Tremors?

Lupus is an autoimmune disease that turns your immune system against your body’s own cells and tissues. The most common type of lupus is called systemic lupus erythematosus (SLE). It can cause your immune system to attack several parts of your body, including your skin, joints, blood vessels, and kidneys. Common symptoms of lupus include fever, joint pain and swelling, hair loss, and a butterfly rash across your cheeks and nose.

While tremors aren’t a common symptom of lupus itself, they can develop in some people with the condition. Sometimes, an overactive immune system can damage your nervous system, leading to tremors. Medications that target your immune system can cause involuntary muscle movements. Below are a few ways your tremors may be related to lupus.

Nervous System Damage

Neuropsychiatric SLE (NPSLE) affects the central nervous system. Research has found that NPSLE is common in some groups of people with lupus and less common in others. Estimates suggest that between 12 percent to 95 percent of people with lupus are affected. This broad range of NPSLE estimates is because of variations in study designs and definitions used. NPSLE may cause tremors, muscle weakness, brain fog, migraine attacks, and other neurological symptoms of lupus.

Autoimmune diseases like lupus can also cause a movement disorder known as chorea. This disorder is different from tremors because chorea isn’t rhythmic. Instead, your movements become unpredictable and don’t have a specific pattern. The word “chorea” comes from the Greek word for “dance,” since the movements can look like dancing.

Research shows that chorea is the most common movement disorder in lupus and can even be one of the first symptoms. It’s estimated that about 2 percent of individuals with lupus have chorea, making it more likely to be directly caused by lupus itself than tremors. Tremors with lupus are most likely due to medication side effects or other conditions.

Tremors as a Side Effect of Medications

For people living with lupus, one of the most likely culprits for tremors is medication. At some point in your lupus journey, you’ve probably been prescribed either a corticosteroid like prednisone, an immunosuppressant such as cyclosporine (Gengraf, Neoral) or cyclophosphamide (Frindovyx), or hydroxychloroquine (Plaquenil, Sovuna). These medications work by reducing immune system activity to help control inflammation.

Corticosteroids and immunosuppressants can both cause muscle twitching and uncontrollable shaking movements, especially in the hands. Hydroxychloroquine can also cause side effects like involuntary muscle movements, shaking, and dizziness. If you’ve recently started these medications and have noticed new tremors or shakiness, talk to your doctor or rheumatologist.

What Do Tremors Feel Like With Lupus?

MyLupusTeam members have turned to one another to ask about their experiences with tremors and shaky muscles. One asked, “I sometimes feel as if I’m shaking internally. Does anyone else experience this? What is it?”

Everyone’s experience with lupus is different, but there do seem to be common themes.

Some members have noticed their tremors get worse when they’re having a lupus flare or when their lupus symptoms are getting worse. “I get this with severe flares. It lasts for days, and it’s only when I move. This happened before I was diagnosed and on no medications and now (diagnosed and with medications),” said one member.

“I get them as well,” another member wrote. “They’re definitely worse when I’m in a flare. Mine are in both my arms and legs.”

Others note that these shakes appear when they’re especially fatigued, a common occurrence when living with lupus. A member shared, “I’ve had that symptom on and off for years before I was ever on medication. It usually happens when I’m very run-down. I’ve also been getting that vibration upon waking for a month or so now during a flare. I am super tired, and my muscles are weak.”

“My tremors are sporadic and small. But it makes it very difficult to sign my name or write,” explained a member. “I noticed that when I am stressed or fatigued, that is when it would show up. It is reassuring to know others have experienced the same.”

Lupus Hand Tremors

Some MyLupusTeam members have noticed their tremors affect just one part of their body, like their hands. A few have even wondered, does lupus cause shaking hands? One member wrote, “I’ve been having intermittent hand tremors. Can anyone relate to this?” Many others replied with similar experiences of lupus hand tremors:

• “My first symptom was a right-hand tremor, which eventually became a right- and left-hand tremor. I’ve learned that my tremors occur when I’m tired or when it’s getting hot out.”
• “Yes, I get them in my hands so bad it’s hard to even put mascara on. It’s not an everyday occurrence, but at least several times a week, all at different times during the day. Occasionally, I feel it in my chest and overall body when I’m exhausted.”
• “I have just started experiencing tremors in my left hand, which would happen when I settle down in my chair in the evenings. I have to hold my hand till the shaking stops.”
• “My hands shake so bad that I can’t write or drink from a cup. I’m not sure if it’s because of lupus, past injuries to my upper spine and shoulders, or a combination of them all.”
• “My hands especially shake when I am tired or I have exerted too much energy during the day. Otherwise, they remain mostly calm.”

How Are Lupus Tremors Treated?

If you’ve noticed new hand tremors or shaky, uncontrollable muscle movements, it’s time to talk to your healthcare provider. Your healthcare provider or rheumatologist can help adjust your medication dose or switch your treatment plan. They may also refer you to a neurologist (a brain and spinal cord specialist) to help get to the bottom of your symptoms.

Stick to Your Lupus Treatment Plan

The best way to control inflammation from lupus and prevent flares is to stick to your treatment plan. If your doctor thinks corticosteroids, immunosuppressants, or hydroxychloroquine medications are causing your tremors, they may switch you to a different medication.

If your tremors, shakes, or chorea symptoms don’t improve over time or after stopping certain medications, your doctor may prescribe other treatments to help. Working closely with your rheumatologist, neurologist, and other providers can help relieve uncomfortable symptoms and improve your overall quality of life.

Join the Conversation

On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.

What treatments have helped your tremor symptoms or made them worse? Let others know in the comments below.