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 think their lupus may be to blame.

“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 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.”

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, which is not really visible. 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 (known as an action tremor) or while you’re relaxed (known as a resting tremor). Tremors can be intensified 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 sort of strong emotion.
• You have low glucose (blood sugar) levels.
• You drank too much caffeine.
• You have kidney failure or liver failure, which causes waste buildup that affects your nervous system.

Causes of Tremors When Living With Lupus

Lupus is an autoimmune disease that turns your immune system against your body’s own cells and tissues. The most common type of lupus — systemic lupus erythematosus (SLE) — 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, and a butterfly rash across your cheeks and nose.

An overactive immune system can damage your nervous system, leading to tremors. Certain medications that target your immune system and treat inflammation may also be responsible for these involuntary muscle movements. Following are a few potential explanations of why your tremors may be related to lupus.

Nervous System Damage

Around 40 percent of people with lupus also have neuropsychiatric SLE (NPSLE) that affects their central nervous system. NPSLE is responsible for causing tremors, muscle weakness, brain fog, migraine attacks, and 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” because you may look like you’re dancing.

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 a corticosteroid like prednisone or an immunosuppressant like cyclosporine. 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. 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 some common themes.

Some members have noticed their tremors get worse when they’re experiencing a flare, or worsening of their lupus symptoms. “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.”

Hand Tremors

Some MyLupusTeam members have noticed their tremors affect just one part of their body, like their hands. One wrote, “I’ve been having intermittent hand tremors, can anyone relate to this?” Many others replied with similar experiences:

• “I’ve had tremors so bad that you’d think it was Parkinson’s disease. The only thing that has helped or stopped them completely was steroids or Xanax.”
• “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.”

How Are Lupus Tremors Treated?

If you’ve noticed new hand tremors or shaky, uncontrollable muscle movements, it’s time to talk to your health care provider. Your doctor 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. You might take nonsteroidal anti-inflammatory drugs (NSAIDs) to help treat NPSLE symptoms like headaches and joint pain and to reduce inflammation. Your doctor can tell you more about which dose is best for you.

If your doctor thinks corticosteroids or immunosuppressants 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 or neurologist may prescribe other treatments to help. Examples include blood pressure medications or anti-seizure medications. Working closely with your rheumatologist, neurologist, and other providers can help relieve uncomfortable symptoms and improve your overall quality of life.

Talk With Others Who Understand

On MyLupusTeam — the social network for people with lupus and their loved ones — more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you experienced tremors while living with lupus? What treatments have helped or made your symptoms worse? Share your experience in the comments below, or start a conversation by posting on your Activities page.