Question

I have just been told that as part of ME I have a condition called allodynia which, as I understand it, affects the brain and nerves. As a result, my brain is detecting pain which is often caused by touch or sometimes movement. The painkillers that I’m currently taking – ibuprofen and paracetamol – don’t really help. Is allodynia more common in people with ME? And are there any other drug treatments that I could try? I should add that I also suffer from occasional migraine-type headaches.

Answer

Allodynia is an unusual form of pain that results from a stimulus that is not normally painful. Some people with ME/CFS report allodynia as part of their pain symptomatology, especially when they have other types of neuropathic/nerve pain. Allodynia is also more common in people who have migraine and being overweight seems to increase the risk.

This type of pain can be related to touch – such as just resting your head on a pillow – where it is known as static allodynia. Or it can be caused by movement – where it is called dynamic allodynia. Even small movements – such as brushing your hair, putting on clothes, or changing position to sit or lay down can trigger this type of pain. Thermal allodynia refers to pain that is triggered by either a warm or cold stimulus. Headache-related allodynia can occur as part of a migraine attack.

Research into allodynia indicates that it is caused by increased sensitisation in key parts of the nervous system, including the spinal cord, that recognize, transmit, interpret and then respond to information about touch, position and pain in the skin. As a result, even normal signals about touch or temperature that are being transmitted by peripheral nerves into the spinal cord and then to the brain are misinterpreted and converted into abnormally painful responses.

As you indicate, allodynia can be difficult to treat. However, there are some prescription only drugs such as amitriptyline and gabapentin that can be tried and would be worth discussing with your GP. If your GP feels unable to help, you could ask for a referral to a hospital-based pain clinic, or a neurologist.

We have an MEA information leaflet covering all aspects of pain management in ME/CFS, including neuropathic/nerve pain. We also have MEA information leaflets covering specific drugs – amitriptyline, gabapentin, pregabalin – that may be used to treat neuropathic pain.

Please let us know if you have allodynia and whether you have found any particular treatment – drug or non drug – to be helpful.

• More information on allodynia from the Cleveland Clinic

See Also: Neuropathic pain, CBD oil for pain relief, Symptom: Nerve Pain