Question

Please could you explain what is meant by neuropathic pain? Is it different to ordinary pain? And is the treatment any different?

Answer

Most (but not all) people with ME/CFS will experience pain at some stage in their illness.

This can vary in both nature and intensity. So pain can occur in the muscles – where it is called myalgia; in the joints – where it is called arthralgia; and involving the nerves – where it is called neuropathic pain.

Neuropathic pain often has an intense shooting, burning or stabbing quality and may keep a person awake at night. Neuropathic pain can also be associated with unusual sensory disturbances – such as tingling or numbness, especially in the arms and/or legs.

Various explanations have been put forward as to what causes neuropathic pain, and in some cases it is triggered by some form of injury. It seems likely that ‘wiring’ faults then develop in the way that messages about the type and severity of pain are being transmitted and analysed in pain centres in the brain.

Nerve pain can be difficult to treat but there are a number of drug and non-drug options that can be discussed with your doctor.

Simple over-the-counter painkillers like aspirin, paracetamol and ibuprofen tend to be of limited value. But there are a number of prescription only drugs, including low-dose amitriptyline, duloxetine/Cymbalta, gabapentin/Neurontin, pregabalin/Lyrica and Tramadol, an opiate drug that can be helpful. Non-drug options include acupuncture, massage, TENS machines and relaxation therapy.

If neuropathic pain is more severe and not responding to treatment, you could ask your GP to be referred to a pain clinic at your local hospital – where they are used to dealing with neuropathic pain.

More Information:

• An MEA information leaflet covers all aspects of pain management – including non-drug approaches such as acupuncture and TENS machines. Similar information can be found in the Treatment section of the MEA Purple Book, which can be sent to your GP. https://meassociation.org.uk/je48
• MEA information leaflets cover the different prescription-only drugs that people with ME/ CFS and fibromyalgia may find helpful for neuropathic pain:
  • Amitriptyline
  • Duloxetine/Cymbalta
  • Gabapentin/Neurontin
  • Pregabalin/Lyrica
• The section on Pain Management in the MEA Management Report (pages 14 to 16) contains a great deal of useful patient evidence on what people with ME/CFS find helpful and not helpful when it comes to pain relief.
• How to obtain NHS help for pain
• NICE guideline on neuropathic pain