Overview

Itching is a very common symptom for people with neurofibromatosis type 1 (NF1). This information explains how to manage itching and NF1. 

Itching and NF1

Itching is a feeling on the skin which makes you want to scratch. It is the body’s normal response that protects us from harmful things in the environment.

Here are some important things to know about NF1 and itching.

• Not everyone with NF1 has itchy skin.
• Itchy skin might not happen all the time.
• An itch can be in 1 area (localised), or all over the body (generalised).
• Lumps or bumps on the nerves (neurofibromas) can be itchy.
• An itch can affect your sleep.
• Heat and exercise might make the itch feel worse.
• Dry skin is common for people with NF1, and can make the itch feel worse.
• Scratching can lead to broken skin, which can become sore and risk getting infected.

Causes of itching in NF1

The exact cause of itching in NF1 is unclear. Some health professionals believe it is because of a cell in our body releasing a chemical called histamine. It might also be due to nerve endings feeling pain (pain receptors).

Tests to diagnose an itch

If you have NF1 and your itch is becoming a problem, you might need to see your GP.

Your doctor might do some tests to see what is causing your itch. These can include blood tests, looking at what medicines you are taking, or other tests. Your doctor will talk to you about any tests you need, and what they involve.

Treating an itch

An itch can be hard to treat, but there are ways to manage it.

Moisturisers

Moisturisers (emollients) can:

• soften cracked areas of skin
• stop the skin from becoming dry
• help other creams to be absorbed into your skin

You can get moisturisers from the pharmacy, supermarket or your GP. Try to use moisturiser 2 to 4 times a day, or more often if needed.

Apply moisturiser with downward strokes, as this can help reduce the build-up of dry skin.

Anti-itch creams

Your doctor can prescribe creams, such as Eurax, to soothe itchy skin. They can also be bought at the pharmacy.

Steroid creams

If your skin is sore, red or swollen (inflamed) your doctor might prescribe a steroid cream. The affected area of skin may be dark in colour on black or brown skin tones.

Antihistamines

These are medicines that help with symptoms like itching. They come as a tablet or liquid, and can be bought from the pharmacy or supermarket. Your GP can also prescribe them.

Some antihistamines can make you feel sleepy (drowsy), so read the instructions that come with the medicine carefully before taking them.

Other medicines

Itching in NF1 can sometimes be treated using the same medicines that treat nerve pain and epilepsy. Your doctor will discuss these treatment options if they’re right for you.

Things you can do to help ease an itch

Anything you can do to take your mind off the itching will help to reduce or stop the scratching.

• Focus on something else, such as reading, watching television or using a stress ball.
• Try meditation, such as relaxed breathing, or mindfulness.
• Keep your nails short to protect your skin if you scratch.
• Try to pat the skin, rather than scratching it.
• Try habit reversal, a type of behaviour therapy that changes how you respond when you feel the need to scratch. Your doctor or nurse can give you more information about how to practice habit reversal. 
• Avoid hot baths, or soaking for too long in the bath, as this will remove the natural oils from your skin.
• Keep your bedroom cool, as heat can make the itch worse.
• Use silk or cotton sheets, and wear cotton clothing which does not irritate the skin.
• Avoid soaps or foaming body washes, perfumed products, or biological washing powders which might irritate the skin.
• Put your moisturiser in the fridge before using it, as this can soothe the itch.