Pain can be an invisible symptom. Unlike a broken arm in a cast or a cut on your finger, pain from neuromyelitis optica spectrum disorder (NMO) cannot be immediately seen. Because of this, it is possible for someone to live their life in severe pain without anyone else realizing it.
Pain is common in NMO and occurs in more than 80 percent of people with the condition. Pain in NMO can be intense, and treatment approaches for pain are often limited. This has a significant impact on quality of life for those living with pain from NMO.1
Despite your best efforts, living with chronic pain from NMO can be an uphill battle. Living with chronic pain means recognizing and confronting stigma, finding the best combination of medical and non-medical therapies, and building your support system.
Pain and stigma
Pain is a symptom that can carry a fair amount of stigma. This leads some people to not want to reveal that they are in pain at all. Since others cannot judge pain level just by looking at the person in pain, pain is often not well understood. These misunderstandings may lead to stereotypes or perceptions being cast onto someone who is battling chronic pain. Judgments can come from friends, family members, employers, or even doctors. It is hard enough to live with pain, but to also live with judgment from others about pain – it may seem unbearable at times.2
Are there medicines that can help?
Neuropathic pain, or nerve pain, is especially severe and often described as agonizing shooting or burning pain. This type of pain is common in an NMO attack. Unfortunately, drugs are not always good at controlling this type of pain. Your doctor may use a combination of drugs to help ease the pain from NMO. These include:1
Some drugs used to treat depression may be helpful for treating symptoms related to pain. There are many options available, and each has side effects and risks. Your doctor may be able to tell you if this is a good treatment choice for you.1
Drugs used to treat seizures may be helpful for treating some types of pain. These drugs work to decrease the excitability of nerve cells in the brain.1
Low-dose opioid drugs
Opioids are narcotic pain medicines. These decrease the excitability of nerve cells in the brain. However, these drugs do not work well to manage nerve pain. Also, concerns with their safety require close monitoring. If your pain is very severe, you may be referred to a pain medicine doctor or clinic.1
Spasticity, or painful muscle spasms, may also occur in NMO. Doctors may prescribe drugs to help relax the muscles for this type of pain.1
What additional therapy might help?
Pain is more than just physical discomfort. Pain can lead to emotional, social, and spiritual distress. Treatment strategies should focus on more than just physical pain relief. Additional non-medical therapies may include:1,3-5
- Biofeedback, which is a technique used to make subtle changes in your body. This can mean relaxing an area of your body to provide pain relief. Biofeedback can help to retrain your brain to react differently to pain.
- Behavioral therapy, which can help you think in a healthy way about coping with a health problem.
- Physical or occupational therapy, which may help you move your body and be more able to carry out your activities of daily living.
- Transcutaneous electrical nerve stimulation (TENS), which is a therapy that uses low electrical energy to relieve pain.
There may be other treatments that have not yet been approved by doctors. These may have been shown to be beneficial to some people with NMO, but they need more evidence to prove they are effective.6
Finding those who provide positive support
Building your emotional strength will help you live with NMO. While there are some people who judge others who are in pain, there are many others who do not. It may be a challenge to determine who the unconditional supporters in your life are, but they are out there.
If you find that no one in your immediate circle is giving you the support you need and deserve, consider finding a support group with others who are in a similar situation. This may be online or in person. Being surrounded by others who understand first-hand what you are going through can give you the emotional boost you need to keep moving forward.
Pain and NMO may go hand in hand. You may have good days and bad days. But, with planning and adjustments, you can live a life full of meaning and purpose. Successful pain management looks different for everyone but may be achieved with the right balance of medical and non-medical treatments. Partnering with your doctor and surrounding yourself with your support team will help you find your own balance.1
The pain you are feeling is valid. If your body and mind are telling you that something is wrong or that you are in pain, listen. Trust yourself and your personal experiences. You know your body best and what it is telling you.