Living with lupus and persistent nerve pain means an ongoing search for relief. Some members of MyLupusTeam have tried gabapentin to relieve their pain. The most common type of lupus is called systemic lupus erythematosus (SLE), which affects many parts of the body. Gabapentin (Neurontin, Gralise, Horizant) is a medication used to treat nerve pain caused by lupus. However, gabapentin poses some risks that can be serious. If you’re thinking about taking gabapentin, it’s important to learn how it can control the pain and to understand the risks associated with it. Discuss these factors with your doctor to decide whether gabapentin is right for you.

Nervous System Complications of Lupus

One of the main complications of lupus is damage to the nervous system, called neuropsychiatric SLE (NPSLE) or central nervous system lupus (CNS lupus). About 21 percent of people with lupus develop complications of the nervous system within about the first seven years of having the disease. Nervous system complications of lupus can involve the three components of the nervous system:

• Central nervous system complications affect the brain and spinal cord and can lead to cognitive dysfunction, brain fog, depression, anxiety, headaches, seizures, and strokes.
• Peripheral nervous system complications affect the nerves throughout your body (excluding the brain and spinal cord) and can cause tingling, pain, or numbness in the hands or feet (peripheral neuropathy), fibromyalgia, vision problems, hearing problems, muscle weakness, and lack of coordination.
• Autonomic nervous system complications can lead to changes in heart rate or blood pressure, leading to dizziness, excessive sweating or inability to sweat, or digestive problems.

Nerve Pain Conditions in Lupus

Lupus can cause inflammation of the nerves and the tissues surrounding them, leading to nerve damage and pain. This condition can result in peripheral neuropathy, which happens when the nerves outside the brain and the spinal cord are damaged. This damage causes weakness, numbness, and pain, often in the hands and feet. The pain caused by peripheral neuropathy is often described as stabbing, burning, or tingling. Peripheral neuropathy is most commonly found in people with diabetes.

Another painful condition found in many people with lupus is fibromyalgia. Fibromyalgia is a long-term pain condition when a person feels constant and widespread pain in their muscles and bones. Approximately 25 percent of people with lupus also have fibromyalgia. Fibromyalgia can lead to fatigue, trouble sleeping, and cognitive problems. Its symptoms include:

• Tingling sensation
• Skin and soft tissue sensitivity or tenderness
• Stiffness
• Headaches
• Light-headedness

Persistent pain from peripheral neuropathy or fibromyalgia can lead to physical and mental stress and diminish quality of life significantly. This pain can be treated with:

• Pain relievers like nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen (Tylenol), and prescription opioids
• Anti-seizure medications like gabapentin and pregabalin (Lyrica)
• Antidepressants like amitriptyline (Elavil), doxepin (Silenor, Zonalon), nortriptyline (Pamelor), duloxetine (Cymbalta, Drizalma Sprinkle), venlafaxine (Effexor), and desvenlafaxine (Pristiq)
• Topical treatments like capsaicin cream and lidocaine patches

Gabapentin and Pregabalin

Gabapentin is an anticonvulsant (anti-seizure) medication used to treat certain types of seizures that occur with epilepsy. Gabapentin, along with pregabalin, belongs to a class of drugs called gabapentinoids. Pregabalin is another anticonvulsant that works similarly to gabapentin. It is stronger and faster acting, and it can be more expensive than other medications.

Gabapentinoids have an analgesic (pain-relieving) effect and are approved by the U.S. Food and Drug Administration (FDA) to treat painful disorders such as:

• Postherpetic neuralgia — Nerve pain from shingles
• Diabetic neuropathy — Tingling or numbness in the feet caused by nerve damage from diabetes
• Nerve pain from spinal cord injury
• Fibromyalgia
• Restless legs syndrome

Gabapentin for Lupus Nerve Pain Management

Gabapentin is considered to be a safer alternative to opioids and has been used increasingly to treat nerve pain in people living with lupus.

Members of MyLupusTeam shared their experience of pain relief with gabapentin:

• “I have been on gabapentin for many years. I never really noticed any side effects, and it definitely helps lessen my pain.”
• “I have taken gabapentin for years now. It definitely helps with my neurological problems — shooting pain in my temples. Also seems to help a bit with my spinal pain.”
• “I started a medication called gabapentin along with my other meds. I actually slept last night for the first time in months.”
• “I just started gabapentin last week. I take it at bedtime for neuropathy in my feet. It has helped so far and also helps me sleep!”

Risks of Using Gabapentin

Although it can be an effective option for managing nerve pain, gabapentin also has significant risks. Possible side effects of gabapentin include:

• Drowsiness
• Slowed breathing
• Dizziness
• Mood swings
• Suicidal thoughts
• Vision problems
• Weight gain
• Liver and kidney abnormalities

In addition, the FDA has issued a warning about serious breathing problems reported in people aged 65 or older and/or who have impaired lung function. Gabapentinoids, when taken together with other central nervous system depressants — including benzodiazepines, sedating antidepressants, opioids, sedating antipsychotics, and antihistamines — are reported to cause problems with breathing.

Members of MyLupusTeam shared their experiences with gabapentin side effects:

• “I have to take gabapentin before bed because I get really loopy with it. I also need to time when I take it because if I take it too late, I feel like I am hungover in the morning.”
• “Gabapentin causes me major mood swings, and that is why I only take it if I have to.”
• “I started gabapentin last Saturday. Has anyone else experienced mega mood swings? I feel very agitated. Things that would normally not make me nuts are frustrating me beyond all reason!”

Talk to Your Health Care Provider

For many people living with nerve pain caused by lupus, gabapentin can bring relief that can allow you to enjoy normal functions of life. However, gabapentin can cause serious side effects, some of which can be life-threatening.

As with beginning other medications, you should talk to your health care provider before starting gabapentin to learn about the benefits and risks. To avoid serious side effects, your doctor may start gabapentin at a low dose and gradually increase it if necessary. Always tell your doctor about other medications you are taking, including over-the-counter medications, as they can increase your risk of serious side effects.

Find Your Team

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

Are you taking gabapentin for nerve pain? Share your experience in the comments below, or start a conversation by posting on your Activities page.