Managing Pain

Everyone experiences pain at some point, and there are different types and causes. When you have spina bifida, you’re more likely to experience pain than the general population. The impact of pain on daily living can vary but for some people, it can have a major effect on quality of life.

It’s important to understand which type of pain is affecting you, as different types need different treatment. People with spina bifida and/or hydrocephalus often experience one or more of these three types of pain.

Nociceptive pain

What is it? A type of pain caused by damage to the body, or a warning of potential damage to the body. You experience this sort of pain when you stub your toe, put your hand in water that’s too hot, or have an injury, for example. Your body has specialised nerve cells called nociceptors, which detect things that could damage the body and pass warning signals rapidly to your brain, so that you take action – for example, sitting down if your ankle’s hurting or taking your hand out of hot water. There are also some nociceptors in your internal organs, but it isn’t always so easy to identify their alarm signals.

When you have spina bifida and/or hydrocephalus: You may get this type of pain in your back, joints and muscles, due to musculoskeletal conditions like arthritis, osteoporosis and tethered cord syndrome, along with degenerative changes in the spine.

Inflammation, reduced blood supply and any stretching (like bloating) in your internal organs can also cause nociceptive pain.

What can help? Painkillers like paracetamol and ibuprofen work by preventing the nerve endings detecting damage, so they don’t send pain signals to your brain. These are often effective for nociceptive pain. Your doctor may sometimes offer prescription painkillers such as morphine, tramadol and pethidine, which act on the brain. Other treatments, such as steroid creams and injections, may be helpful if long-term inflammation is causing pain.

If you have a shunt, headaches may be a warning sign that it isn’t working properly. A shunt blockage can be very serious. Acute blockages can be life threatening. NHS Inform has more information on shunt complications.

Neuropathic pain

What is it? Also known as nerve pain, this type is caused by problems with your nervous system (your brain, spinal cord and nerves). Unlike nociceptive pain, it doesn’t develop in response to something specific – it’s to do with the way you experience pain. Symptoms may include sharp or shooting pain, tingling and numbness and extreme sensitivity to touch.

When you have spina bifida and/or hydrocephalus: Changes to your nervous system can affect the way you experience pain, which may raise your risk of nerve pain. This type of pain includes migraine, pain caused by nerve damage, and problems with trapped nerves, like sciatica. Around 10% of people with hydrocephalus have severe headaches even when their shunt is working properly – this can also count as neuropathic pain. You’re more likely to experience this type of pain as you get older.

What can help? Standard painkillers may not be helpful for nerve pain. Instead, your doctor may prescribe other medications, such as amitriptyline, gabapentin and lamotrigine. These medicines are usually prescribed for depression or epilepsy, but they work in a different way to ease pain. 

Chronic pain

What is it? When you’ve been living with pain for a long time, your brain can permanently change in response. It can start telling you that you’re in pain, even when there’s no longer a clear cause. This doesn’t mean you’re imagining your pain – there are real changes in your brain that alter the way you experience pain. Your body may also make lower levels of natural pain-killing chemicals. Overuse of painkilling medication can contribute by changing the way your body deals with pain signals and may lead to rebound headaches.

When you have spina bifida and/or hydrocephalus: Researchers are still trying to understand more about chronic pain in adults with spina bifida. Depression, anxiety and sleep problems can be more common in people with spina bifida and/or hydrocephalus, and these can make pain feel worse – which can then affect sleep and your mood even more.

What can help? There’s no straightforward treatment for chronic pain and it may never go away completely, so it’s important to find pain management strategies that help you. This is likely to involve making changes in different areas of your life, such as learning techniques to pace yourself and improve your sleep.

Getting support for pain

See your doctor
It’s important to get medical help when you’re in pain. It can have a major impact on your quality of life, so don’t put off seeking help. Also, shorter term pain can become chronic if it’s not controlled and may become harder to treat. Your doctor can rule out serious causes, diagnose the cause of the pain and may be able to offer treatment that helps. This may include medication, if it’s suitable for you. Your GP may refer you for other support, such as:

• physiotherapy, if you have muscular pain or problems with your posture
• talking treatments, which can help you reframe pain and its effects on your life – psychological support helps you to manage pain and doesn’t mean it’s all in your head²

If you’re living with severe chronic pain, your GP or health professional can refer you to the Scottish National Pain Management Programme, a specialist programme to help you develop skills for managing your pain. You’ll be assessed and treated by a team of different specialists.

Try mindfulness
Mindfulness techniques can help you to focus on the present moment and relax, which can be helpful for easing pain. You can find simple mindfulness activities online or via apps such as Headspace.

Find support

You may find it helpful to connect with other people with spina bifida and/or hydrocephalus, who can share their experiences of managing pain.

Call the SBH Scotland Helpline on 03455 211 300 or you can fill in this form to get in touch with our support team

Pain Association Scotland also has lots of information and resources, along with support groups for people living with pain.