NMO Symptoms: Pain

Last updated: January 2023

Pain is an unfortunate part of living with neuromyelitis optica spectrum disorder (NMO). It can impact your quality of life, both physically and mentally. And discomfort may continue even after you take pain medicine.

A German study found that more than 8 out of 10 people who have NMO live with pain. While most, 84 percent, described it as mild, a significant percentage, 14 percent, ranked it as severe.1

How and where does NMO pain show up?

How you experience pain may depend on what type of NMO you have since different types can affect different parts of the body. Many with NMO describe it as1:

  • Throbbing
  • Flashing
  • Prickling
  • Tingling
  • Nerve (neuropathic) pain

    An insulating layer called myelin protects the nerve fibers in your:2

  • Brain
  • Spinal cord
  • Eyes
  • Damage to this insulating layer is known as demyelination. NMO is a demyelinating disease. Damage to the myelin can slow or even stop nerve signals, causing nerve pain and other brain and nerve issues.2

    Eye pain

    Pain behind the eyes is a symptom of optic neuritis. Optic neuritis is a condition that happens along with NMO.3

    A bundle of nerves inside your eye called the optic nerve connects the eyes to the brain and carries information between them. Swelling of the optic nerve damages it and causes optic neuritis. You may feel a dull ache at the back of your eyes, especially when you move them. Optic neuritis also causes short-term vision loss.3

    Muscle spasms

    When NMO damages nerves, it can cause paroxysmal tonic spasms (PTS). These muscle spasms can happen many times a day, lasting seconds or minutes. Between 25 and 40 percent of people living with NMO experience PTS.4,5

    Headache

    NMO can bring on headaches resulting from tension or nerve swelling in the eyes. A few people who took part in the German study also had migraine. Headache may be more common in people with MOG-IgG (myelin oligodendrocyte glycoprotein antibody) NMO.1

    Affect on day to day life

    Negative impacts to mental health

    The physical pain of NMO can take a toll on your mental health. People with the condition may have higher rates of depression compared to those without NMO.1

    The German study found that about 4 out of 10 people with NMO had mild to moderate depression. And the more intense your pain is, the more severe your depression is likely to be.1

    Fatigue

    If you feel tired all the time, it may be a side effect of pain from NMO. People with NMO-related pain have more trouble with fatigue than those without the illness, researchers say.1

    Fatigue with NMO could be:1

  • A side effect of medicines you take for NMO
  • Caused by a higher level of cytokines, proteins that help manage cell growth and activity
  • Part of your brain and nervous system’s reaction to living with chronic pain
  • When it goes untreated

    Research shows that people with this illness often do not get treatment for their NMO pain. Fewer than 4 out of 10 people in the German study received pain medicine. Those who took medicine experienced pain and, overall, a poorer quality of life. The authors of the study say that these results show the need to rethink effective pain management in people living with NMO.1

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