Treatment - Complex regional pain syndrome

There's no known cure for complex regional pain syndrome (CRPS), but a combination of physical treatments, medicine and psychological support can help manage the symptoms.

It's estimated around 85% of people with CRPS slowly experience a reduction in their pain and some of their symptoms in the first 2 years.

But some people experience continuous pain despite treatment.

In rare cases, further problems may develop, such as muscle wastage in the affected limb.

There's currently no way to predict who will improve and when this may happen.

Your treatment plan

Treatment for CRPS involves 4 main areas:

• education and self-management – advice about any steps you can take to help manage the condition
• physical rehabilitation – to help improve your function and reduce the risk of long-term physical problems
• pain relief – treatments to help reduce your pain
• psychological support – interventions to help you cope with the emotional impact of living with CRPS

Some of the main treatments used for CRPS are described here.

Self-management

As part of your treatment, you'll be advised about things you can do yourself to help control your condition.

This may include:

• education to help you understand your condition
• support to stay active and use the affected body part
• learning techniques to help you manage increases in pain
• learning relaxation methods to help improve your quality of life
• advice on activity management to help avoid dips in activity despite pain
• continuing rehabilitation treatments at home, such as desensitisation techniques
• accessing any support groups in your local area

Get more advice about ways to manage chronic pain

Physical rehabilitation

Physical rehabilitation involves a number of different treatments.

The aim is to gradually allow you to increase your activities and function without making the pain worse. 

This can be difficult as any movements or stimulation of the limb will increase pain or the other symptoms of CRPS, such as swelling, colour changes and sweating.

Too much or too vigorous exercise can aggravate the condition, so it's important for your therapy to be supported by a therapist with experience of CRPS.

Here are some techniques that may be used as part of your physical rehabilitation programme.

Exercises

Your exercise plan may include a range of gentle exercises, from simple stretches to exercises in water (hydrotherapy) or weight-bearing exercises.

Desensitisation

Desensitisation is a technique used to reduce the sensitivity of body parts affected by CRPS.

It usually involves touching an unaffected body part close to the affected body part with materials of different textures, such as wool and silk, and concentrating on how this feels.

The same materials are then gradually applied to the painful affected body part while you try to recall what it felt like when they were touching the unaffected body part.

This process is likely to be uncomfortable or painful at first, but it may eventually reduce the sensitivity in the affected body part so it's more similar to unaffected areas.

Mirror visual feedback and graded motor imagery

If you have CRPS, movement can often be difficult, as information the brain needs to perform movements is often missing or confused.

Techniques like mirror visual feedback and graded motor imagery aim to improve movements by retraining the brain for these missing or confused bits of information.

Pain relief

There are several medicines that may help treat CRPS. Your pain specialist will be able to discuss them with you.

Your treatment team will try lower-strength painkillers first and will only use stronger painkillers if necessary.

None of the medicines used to treat people with CRPS are licensed for this use in the UK.

This means these medicines may not have undergone clinical trials to see if they're effective and safe in treating CRPS specifically.

But these medicines will be licensed to treat another condition and will have undergone clinical trials for this.

Doctors may choose to use an unlicensed medicine if it's thought to be effective and the benefits of treatment outweigh any risks.

Here are some of the main pain relief treatments.

Non-steroidal anti-inflammatory drugs (NSAIDs)

The first painkillers often used to treat CRPS are over-the-counter painkillers called non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen.

NSAIDs can help reduce the pain caused by the injury that triggered CRPS.

They can also treat CRPS-associated pains, such as muscle pain in the shoulder when the CRPS is in the hand.

But NSAIDs are unlikely to directly reduce CRPS pain. 

Anticonvulsants

Anticonvulsants are usually used to treat epilepsy, but have also been found to be useful for treating nerve pain.

Gabapentin and pregabalin are the most widely used anticonvulsants for treating CRPS.

Common side effects of anticonvulsants include drowsiness, dizziness and weight gain.

There's also a small increased risk of suicidal thoughts, which may occur as early as a week after starting treatment.

Do not suddenly stop treatment with anticonvulsants as you may experience withdrawal symptoms.

If you feel you no longer need to take it, your GP will arrange for your dose to be slowly reduced over a period of at least a week.

Tricyclic antidepressants

Tricyclic antidepressants (TCAs) were originally designed to treat depression, but like anticonvulsants were found to be effective in treating nerve pain.

Amitriptyline and nortriptyline are the most widely used TCAs for treating CRPS, although nortriptyline generally has fewer side effects.

These medicines can often improve sleep and are usually taken in the early evening to reduce the risk of "hangover" effects the next morning.

Possible side effects include:

• a dry mouth
• blurred vision
• constipation
• heart palpitations
• difficulty urinating

You may experience withdrawal effects if you suddenly stop taking TCAs.

If you feel you no longer need to take them, your GP will arrange for your dose to be slowly reduced over a period of at least 4 weeks.

Opioids

If you're experiencing severe pain, opioids such as codeine and morphine can sometimes provide pain relief.

Common side effects of opiate painkillers include:

• nausea and vomiting
• constipation
• dry mouth
• tiredness
• thinking processes can be slower (cognitive problems)

Long-term use of high doses of opioids has been linked to more serious health problems, such as depression, absent periods in women, and erectile dysfunction (impotence) in men.

The benefits of using opioids may sometimes outweigh the risks, but unfortunately these medicines are often not very effective in treating CRPS.

Long-term use of high doses is generally not recommended, although exceptions may be made in a small number of cases under the care of a pain specialist.

Addiction to opioids is rare, but there's a risk you may become dependent on them.

This means your body and mind do not want to stop taking them, even if they're not very effective.

You may feel worse for a short period of time when you do reduce or stop taking them.

Spinal cord stimulation

A treatment called spinal cord stimulation may be recommended if medicine does not reduce your pain.

It involves having a device placed under the skin of your tummy or buttocks, attached to a lead placed close to your nerves in the spine. 

The device produces mild electrical pulses that are sent to your spinal cord.

These pulses change how you feel pain. You may feel a tingling sensation in the part of your body that usually hurts, which masks the pain.

The level of stimulation can be adjusted as your pain improves or gets worse, and the device can be removed if necessary.

The National Institute for Health and Care Excellence (NICE) states that spinal cord stimulation should only be considered if:

• you're still experiencing pain after 6 months of trying other treatments
• you have had a successful trial of the stimulation – the trial only involves placing the leads, not implanting them

Your care team will discuss spinal cord stimulation with you if they think it could help.

Psychological support

Living with a long-term painful condition can be distressing and people with CRPS may experience psychological problems, such as anxiety and depression.

It's important to look after your psychological wellbeing, as depression and anxiety can interfere with your rehabilitation.

Psychological therapies can also be useful in helping you cope better with the symptoms of pain.

For example, some studies have shown that cognitive behavioural therapy (CBT) can help in the management of long-term pain.

These therapies are often taught to small groups of people with severe pain, together with rehabilitation techniques, in pain management programmes.

The aim of CBT is to help you understand how your problems, thoughts, feelings and behaviour can affect each other.

By discussing and altering how you feel about your condition, CBT can help you cope with your symptoms and make it easier for you to continue with your rehabilitation programme.

Your care team

Because of the complex nature of CRPS, a number of different healthcare professionals will usually be involved in your care.

These include:

• a physiotherapist, who can help you improve movement and co-ordination
• an occupational therapist, who can help you improve the skills needed for daily activities
• a pain relief specialist, a doctor or another healthcare professional trained in pain relief
• a psychologist, a specially trained mental health professional who can help manage and understand some of the emotional impact associated with long-term pain
• a social worker, who can provide information and advice about extra help and services
• an employment adviser, who can offer support and advice to you and your employer to help you stay in, or return to, work
• a GP, who can co-ordinate your care

These healthcare professionals may work with you either individually or jointly in pain management programmes.

The aim is to support you so you can manage the impact of pain on your life, even if the intensity of your pain cannot be reduced.