Neuromyelitis Optica and the Neuropathic Itch

One of the most troublesome symptoms of my NMOSD is neuropathic pruritis or neuropathic itch. It occurs due to damage to neurons of the peripheral or central nervous system.

I have many lesions throughout my spine and one of my brain. The first symptom I dealt with during my attack was a rash on the side of my neck and severe pain in my brain. The pain spread throughout my body, but as it spread, there was no rash present like there was on my neck.

What was this mysterious itch?

It was incredibly confusing as I constantly suffered from burning sensations and itchiness. It got to the point I would keep scratching until I bled. The cuts from all the itching resulted in extreme agony that left me paralyzed until the pain subsided.

I was given a 5-day drip of IV steroids during my first attack, and the itch went away. I was so relieved that I wouldn’t have to deal with the itch ever again.

A week later, it slowly crawled back into my life, starting with burning sensations.

The pain is complex and confusing

It’s difficult to explain how it truly feels, but I want to give it an attempt. Imagine you have a rash, but it's invisible. You feel swollen and inflamed (from your nerves), and you can’t resist itching, no matter how painful it is. You keep itching and itching, and the pain spreads throughout your whole body.

Unless you are suffering from the itch sensations and pain firsthand, it is very hard to comprehend how it feels - even when someone tries to explain it to you. I always find myself unable to explain to people when I'm in discomfort because of the itch. I usually end up saying that I'm ‘flaring.’

There's no relief because the "rash" is not on your skin. It’s a sensation coming from the nerves inside your body! With a physical rash, you can easily get creams that would provide some relief to help the pain and itching. But with the neuropathic itch, there is no known cure, and you are stuck with it!

What triggers neuropathic itch?

I’ve noticed that certain things trigger the itch for me. Drinking full-sugar drinks will cause a flare, along with eating sugary foods. In extremely hot weather and if I'm active, for example, walking with just a t-shirt on, it’s inevitable that my nerves will trigger itching and burning sensations.

Tips and tricks to prevent the pain

Even though there is no known cure, there are some things I can do to prevent the pain. Once I feel the itch, I try to leave the body part that is flaring up alone. As hard as it seems, it is better to leave it alone since itching can cause the body part to become stiff and swollen. Running the affected body part under cold water for a few minutes or even icing it can help too.

Since the sensations worsen in hot temperatures, I tend to wear light clothes if I know I will be pretty active.

The neuropathic itch makes the healing process a hundred times harder when I've injured myself with a burn or a cut. I have tried to be as careful as I can since NMOSD came around because even the smallest cuts can cause extreme discomfort.