Complex regional pain syndrome

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is an uncommon condition. It usually affects one limb, but can happen in other areas of the body.

Severe pain is the main symptom. Other sensory symptoms can include:

• swelling
• temperature
• colour changes

Motor dysfunction (difficulty moving) can also be a problem.

How does it happen?

CRPS is thought to be the result of pathways in the nervous system becoming over-sensitive to normal sensory information. This can happen after an injury or trauma, but this is not always the case.

A trigger may never be identified, and it is important to highlight that this would not influence or change treatment.

CRPS can affect people of any age, including children and young people. It can present very differently in children and young people. Research into CRPS is ongoing and evidence is limited in children and young people. This condition remains not yet fully understood. Because of this, we advise against looking into information online as it is mainly adult based.

Signs and symptoms

Pain

Pain is typically the main ongoing symptom of CRPS which can be described as burning, aching, or feeling like an ‘electric shock’.

Altered sensation

With altered sensation, skin can feel very sensitive or even painful to light touch. This is known as allodynia. The sensitivity can make it difficult to tolerate some types of clothing. It can also feel like of pins and needles, or numbness.

Colour and temperature changes

The affected areas may fluctuate in colour and temperature, feeling more hot or cold, with a mottled, discoloured appearance.

Sweating

You may notice an increased wet, clammy feeling from sweating more than usual.

Appearance

Skin can look shiny, thickened, with changes in hair or nail growth.

Function

You may have a decreased range of motion in the affected area, weakness, or abnormal movements in the affected limb. It can be hard to start movement. It may also feel as if your limb does not quite belong to you, feels bigger, or smaller than it actually is.

How long does it last?

It is very difficult to predict how long CRPS will last, but with early recognition, diagnosis and starting treatment, the better chance of recovery.

It is common for signs and symptoms to vary, resulting in good and bad days. Following the advice of the multi-disciplinary team and engaging in an individual treatment programme can be very beneficial.

What does treatment look like?

Pain management

CRPS usually requires specialist pain management service input, looking at all aspects of day-to-day life. Team members who may be involved include:

• pain management therapists (physiotherapists and occupational therapists)
• psychologists, cognitive behavioural therapists (CBT), family therapists or psychiatrists
• doctors specialising in pain medicine
• specialist pain nurses

Understanding what is going on in the body is an important first step, followed by an individualised treatment plan to gradually increase function, participation in daily activities, and re-establishing routines.

Helpful strategies can be explored to encourage patients to be proactive in their own recovery. It is really important to stay involved with activities which you value and enjoy, helping recovery.

Emotional wellbeing

Being unwell in any way is stressful, but some children and young people with CRPS and their families may experience low mood or anxiety. Support for this can be explored and may involve working with professionals who can help with strategies and coping skills specifically looking at thoughts and feelings.

Desensitisation for allodynia

When an area of the body is hypersensitive, desensitisation techniques can be used to gradually improve a sensitive area. Consistent touch, movement and weightbearing can decrease sensitivity. Pain management therapists can offer guidance on this.

Medication

Often people with CRPS report that over-the-counter pain relief does not help.

Alternative medications can be considered to aid the recovery process, however they are a small part of the bigger rehabilitation picture. These types of medication often need to be taken long-term and are never considered ‘a quick fix’.

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