Central post-stroke pain: nerve pain after a stroke

A stroke happens when blood cannot reach part of the brain, either because a clot blocks a blood vessel or because a vessel bursts, as the Pain Relief Foundation explains. The NHS describes it as blood stopping flowing to a part of the brain, and says it can affect speech and movement and take a long time to recover from.

Pain after a stroke is common, and it has several forms. Chest Heart & Stroke Scotland lists shoulder pain, painful spasms or spasticity, headache and central post-stroke pain, and says some people have more than one type at once. It says pain after stroke is common, occurring in up to half of all people who have had a stroke.

Central post-stroke pain, or CPSP, is the nerve-pain form. The Pain Relief Foundation says it used to be called thalamic pain syndrome and that it is quite different from the muscular pain and stiffness that often affects the shoulder after a stroke, which is mainly due to reduced movement and can often be treated with physiotherapy.

Chest Heart & Stroke Scotland points out that CPSP does not arise from physical damage to the part of the body where the pain is felt, although it can feel very much like it does. The pain is generated by the way the damaged brain processes signals.

The pain is felt in the part of the body affected by the stroke. Chest Heart & Stroke Scotland says the area can vary in size, from a small part of the face or one hand to a whole side of the body, and that the pain may come on suddenly with no obvious reason or in response to stress, touch, movement or temperature.

The Pain Relief Foundation says people often describe the pain as burning, throbbing, shooting or stabbing. Chest Heart & Stroke Scotland adds that people describe pins and needles, squeezing, electric-shock-like pain, lacerating pain and numbness.

Changes in feeling are common. Both organisations say there may be a loss of feeling in the affected part, such as being unable to tell warm from cold in the bath, or to feel sharp objects or light touch. At the same time, in some people light touch such as clothing brushing the skin, or cold, can cause severe pain. The Pain Relief Foundation calls this hypersensitivity or allodynia and says that in some cases movement may cause severe pain.

• Burning, throbbing, shooting or stabbing pain in the area affected by the stroke.

• Pain triggered by light touch, clothing, cold or movement (allodynia).

• Reduced ability to feel temperature, sharp objects or light touch in the same area.

• Pain that can disturb sleep, cause tiredness, and affect mood; Chest Heart & Stroke Scotland says pain after stroke can lead to depression and anxiety.

There is no definite test. Chest Heart & Stroke Scotland says diagnosis is based on several factors: making sure there is no other likely cause for the pain, the pain starting at the same time as or after the stroke, its location matching the location of the stroke, and the type of pain being typical of CPSP.

Because it often comes on weeks or months afterwards, it is not always linked to the stroke by the person or by the clinicians seeing them. The Pain Relief Foundation says early diagnosis and treatment will help, and that a doctor may refer you to a specialist stroke unit if you develop nerve pain after a stroke. After other possible causes of pain have been treated, the stroke unit may refer you on to a specialist pain clinic.

It is therefore worth mentioning any new pain, burning or unusual sensations to your GP, stroke team or therapist, even if it seems unrelated or you think it is something you have to put up with.

Both sources say there is no cure but there are treatments that can help. The Pain Relief Foundation says they may partly reduce the pain but it will not completely disappear, and that it may be necessary to try different medicines to see if they help. Chest Heart & Stroke Scotland says the evidence that medicines work is not very strong, that it may take a few weeks to feel a benefit, and that medicines should be taken regularly rather than only when the pain is bad.

The NICE guideline on neuropathic pain in adults (CG173) is written for nerve pain in general, not specifically for CPSP. It recommends offering a choice of amitriptyline, duloxetine, gabapentin or pregabalin as initial treatment for neuropathic pain (except trigeminal neuralgia), and considering referral to a specialist pain service if pain is severe or significantly limits daily life.

Chest Heart & Stroke Scotland says stress and emotional upset can make CPSP worse, and suggests relaxation techniques, meditation, deep breathing, gentle yoga or tai chi. It says many people find the pain is less when they are moving, and that it can help to avoid things that provoke pain such as hot baths, tight or bunched clothing and pressure on the affected side.

Distraction, such as reading, television, a change of scenery or meeting a friend, can help for a while. Talking to carers and healthcare professionals about the pain matters, and the charity notes that depression is common with long-term pain, so low mood is worth raising too.

The Pain Relief Foundation says that in 20% of people with CPSP the pain gets better over a period of years, and a third of these improve in the first year. Chest Heart & Stroke Scotland says that in some people CPSP improves over time, while for others it is long-lasting but can be managed with the right treatment and coping strategies.

The NHS says stroke rehabilitation is planned by your healthcare team after discharge, and a review of progress should be offered after about 6 months. Pain is a legitimate item for that review.

Pain after stroke is normally raised with a GP or the stroke or rehabilitation team, who can arrange medicines and refer to an NHS pain clinic or pain management programme. Some people also pay to see a private pain specialist. Because several of the medicines used are also prescribed in other conditions and have side effects, it helps if one prescriber keeps an overview, and your GP should be told of anything started elsewhere.