Have you ever been knocked out of bed by uncontrollable body movements? It may not be a common symptom of systemic lupus erythematosus (SLE), but it’s happened to members of MyLupusTeam. They’ve reported muscle twitching they associate with medication side effects, nutritional deficiencies, and impending lupus flares.

“The twitches never go away completely, but they get more frequent and animated before and during most of my flares,” explained one member. “Sometimes, it’s just a little neck twitch. Other times, my whole body spasms and jerks around. … The movements often flare up during a stint of chronic headaches.”

Lupus and antiphospholipid syndrome, another autoimmune disease associated with lupus, are both connected with movement disorders. Fortunately, most people see improvements after receiving the proper treatment. Start by learning to identify and describe your symptoms so you can work on a solution with your health care provider.

How Muscle Twitching Feels

Muscle twitching can affect different parts of the body. For some MyLupusTeam members, it happens daily, and for others, it’s an occasional symptom that happens randomly or in response to certain triggers:

• “It’s like tiny one-time spasms over different parts of my calves, ankles, and thighs. It can be generalized occurring at random muscles, or it can be focal and persistent at the same location.”
• “One of my lupus symptoms has been uncontrollable muscle twitching in my legs, arms, and torso. They don’t hurt but are bothersome when you’re trying to rest or sleep.”
• “I get intercostal muscle spasms that hurt like nothing I’ve ever experienced. I can’t move and can only take small shallow breaths. They happen more when I’m stressed or going through a flare.”

Perhaps one of the more frustrating aspects of muscle twitching is that it prevents some MyLupusTeam members from getting a restful night’s sleep.

“My body starts jerking when relaxed or going to sleep, and it wakes me up,” said one member. “First, it was my stomach. … It was like being kicked by the baby when pregnant. Now, I have it in my legs, stomach, and arms. But I haven’t noticed it happening when I am busy or awake.”

Not all muscle twitching is the same. The general term for involuntary muscle spasms is myoclonus or myoclonic jerks. They may happen in a pattern with several movements in a row, or they can be isolated and infrequent. Spasms can range from a quick twitch followed by relaxation or persistent, shocking contractions that interfere with daily life. Keeping track of when and how you experience muscle twitching can help your health care provider pinpoint the cause.

Potential Causes of Muscle Twitching

Muscle twitches are more common in people with health conditions or injuries that affect the nervous system. For example, people with multiple sclerosis, epilepsy, Parkinson’s disease, or Alzheimer’s disease may experience muscle twitching. Head and spinal cord injuries, strokes, brain tumors, and oxygen deprivation can also lead to muscle spasms. Finally, kidney or liver failure, poisoning, and metabolic disorders are other possible underlying causes. But before jumping to conclusions, keep in mind that muscle twitching can also be a normal occurrence in healthy people, with no need for medical concern or treatment, especially after exertion. The only way to know if you should take further action is by collaborating with your health care team.

Do Lupus Meds Cause Muscle Twitching?

Most people require multiple medications to manage the autoimmune symptoms of lupus and slow down disease progression. Unfortunately, it’s not unusual to experience some unpleasant side effects.

Gabapentin

A couple of MyLupusTeam members have reported muscle twitching with gabapentin (Neurontin). Gabapentin is an anticonvulsant that affects how the body perceives pain. Normally, it reduces unwanted movements, like restless legs syndrome. However, you should talk to your doctor about muscle twitching while taking gabapentin because this medication affects nerve signals in the brain and should be having the opposite effect. It’s important not to stop taking gabapentin suddenly on your own because you can experience withdrawal. Your provider can help you switch to a different treatment or taper off safely.

Escitalopram

Escitalopram (Lexapro) is a type of antidepressant medication known as a selective serotonin reuptake inhibitor (SSRI). It works by affecting the way your brain handles the neurotransmitter serotonin. Shaking is listed as a potential side effect of escitalopram.

One MyLupusTeam member described how it affected them: “I have essential tremors. And I have been taking Lexapro for depression for years. Now, my sister thinks that I have twitches and jerks from the medication. The tremors are really out of control. I thought I had Parkinson’s disease.” Just as with gabapentin, stopping escitalopram suddenly can cause withdrawal symptoms. So be sure to consult your health care provider before changing your medication.

Prednisone

Another common medication for lupus that can cause muscle twitching is the corticosteroid (steroid) prednisone. “I get muscle twitches from the higher dose of prednisone — when I am not on it, it goes away,” said a MyLupusTeam member. Muscle twitching or tightening and “shaking of the hands that you can’t control” are both listed as potentially serious side effects of prednisone. Because you may only need a higher dose of prednisone temporarily to manage a flare, your doctor can help you weigh the risks and benefits of taking it.

If you suspect any other medications that you take for lupus or other health conditions may be causing muscle spasms, ask your health care professional or pharmacist for more information. Medications affect people differently, so it’s possible to experience a rare side effect that’s not always listed on the label. Always consult your doctor before stopping any medication or changing how you take it.

How To Manage Muscle Twitching

It’s important to talk to your doctor if you’re experiencing a new symptom like muscle twitching. They can help you identify a deficiency that needs treatment or provide guidance on reducing medications that may be contributing to the problem. For instance, some medications and impaired kidney function can affect your body’s magnesium levels. Signs of a magnesium deficiency include muscle contractions and cramps.

Members of MyLupusTeam reported that adequate hydration and magnesium have helped reduce muscle spasms. Some of their advice included:

• “I had terrible calf spasms, which were so painful. I noticed it was on days when I was dehydrated or drank fizzy drinks. Try to drink lots of water and add magnesium to your diet.”

• “I found if I pay close attention, I can usually feel the muscle start to twitch before a full-on painful spasm. If I catch it, I can get a washcloth soaked in warm water that has magnesium in it (like one-quarter cup) and put that washcloth over the spot. It usually stops the spasm. If my whole body is aching, soaking for an hour in a bathtub with 2 cups of magnesium calms my whole body down.”

• “Try the Epsom salts in a warm bath. You should probably ask your doctor how your magnesium levels are doing. Mine tend to be low, so magnesium supplements really do help tremendously.”

In addition, several medications, including antiplatelets, anticoagulants, and immunosuppressants, can help address movement disorders. Treatment options may also include botulinum toxin injections (Botox), hormone therapy, and certain tranquilizers or barbiturates. Your rheumatologist may refer you to a neurologist for blood tests or scans to screen for brain or nervous system problems before providing medical advice.

Although occasional muscle twitching seems fairly common among people with lupus, it’s not a symptom you should ignore. Following up on any changes can help you and your doctor figure out more about what works and doesn’t work for your body.

Talk With Others Who Understand

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

Do you experience muscle twitching, tremors, or cramping with lupus? Do you have any tips for managing these symptoms? Post your thoughts in the comments below, or start a conversation by posting on your Activities page.