Pain

For those with neuromyelitis optica spectrum disorder (NMO), pain can be an unfortunate reality. It may never really go away. Chronic, long-term pain impacts between 72 and 86 percent of those with NMO. Like so many other aspects of NMO, the types of pain someone may experience vary widely from person to person.1

Neuropathic (nerve pain)

Nerve fibers in your brain, spinal cord, and eyes have a protective coating called myelin. Damage to this layer is called demyelination. Conditions like NMO are demyelinating because they damage this protective layer.2

When this layer is damaged, nerve signals can slow or stop. This leads to brain and nerve problems, including nerve pain.2

Nerve pain is often described as a burning, electrical, stinging, or shooting pain.1

How is nerve pain treated?

Nerve pain in NMO can be difficult to treat. Studies have shown that preventive drugs used to prevent attacks of NMO may be most effective. However, these preventive drugs are limited to those who have the antibody that targets a protein called aquaporin-4 (AQP4). One in 4 people with NMO do not.1,3

As of early 2021, another novel therapy for NMO is scrambler therapy. It showed positive outcomes for nerve pain in 1 study. Scrambler therapy uses electrical impulses to block pain signals. More studies are needed to show its effectiveness and long-term safety in treating nerve pain linked to NMO.1,4

Some doctors may prescribe drugs to help with the pain caused by NMO. These may include:5

  • Anti-seizure drugs
  • Muscle relaxers
  • Antidepressants
  • Painkillers

Everyone is different, and your response to pain is different. Talk to your doctor about your pain and the questions you have about your treatment choices. Your neurologist may refer you to a pain management specialist to help you better manage your pain.

Eye pain (optic neuritis)

The optic nerve is a bundle of nerve fibers. It is the communication cable between your eyes and your brain. Optic neuritis occurs when inflammation damages the optic nerve.

Optic neuritis can cause sudden eye pain or a severe headache in the eyes. Usually, this is made worse with eye movement. Optic neuritis can also cause problems with your vision or may cause complete blindness. This is usually in 1 eye, but it can affect both eyes. Symptoms may include:6,7

  • Partial or complete blindness
  • Problems seeing different colors
  • Blurred or tunnel vision
  • Depth perception problems

How is eye pain treated?

Treatment for optic neuritis involves decreasing the swelling in the optic nerve of the eye. This is important to preserve vision and decrease pain.7

Treatment usually consists of steroids, which are strong anti-inflammatory drugs. These drugs may be needed either through the vein (intravenous) or by mouth, depending on the severity of your symptoms.7

Spastic pain

Paroxysmal tonic spasms (PTS) are painful muscle spasms that happen as a result of the nerve damage caused by NMO. These intensely painful spasms can last seconds to minutes and can happen multiple times a day. PTS has been reported to impact up to 25 to 40 percent of those with NMO.1,8

How is spasticity in NMO treated?

Your doctor may prescribe muscle-relaxing drugs to help relieve painful muscle spasms related to NMO. These drugs are usually given in pill form. For very severe or difficult-to-treat pain, they may be given using an intrathecal pump, also called a pain pump.1,9

A pain pump is a way of giving medicine directly to your spine. The system uses a small pump that is surgically implanted under the skin of your belly. The pump delivers a small amount of drugs directly to your spine through a small catheter (flexible tube). Because the medicine is applied directly to the spine, it acts quickly. A pain pump also may decrease the side effects of some drugs because you do not have to digest a pill.9

Managing your NMO pain can be challenging. However, help from your doctors can set you up for better success in treating the pain and improving your quality of life.

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Written by: Katie Murphy │ Last reviewed: September 2021