Like most people with ME/CFS, pain is a fairly constant and frustrating symptom. But this has become more persistent and severe over the past few months. My GP has prescribed various pain relieving drugs – including low doses of amitriptyline and gabapentin – none of which has had much effect. As well as the pain, which often has a burning quality to it, the areas around it sometimes feel numb and strange. I’m starting to feel quite depressed as a result – is there anything else that could be done to help?
From your description, it sounds as though you may be experiencing neuropathic or nerve pain which can also be a symptom of peripheral neuropathy. A useful way for doctors to confirm a diagnosis of nerve pain is by using a screening tool called the Leeds Assessment of Neuropathic Symptoms and Signs. Over-the-counter painkillers are seldom effective for this type of pain, but there are a number of prescription-only drugs that can be effective, often at low doses, that may be worth trying. These include amitriptyline, duloxetine/Cymbalta, gabapentin/ Neurontin and pregabalin/Lyrica. Tramadol, which is also sometimes prescribed for pain relief in ME/CFS, is more suitable for short-term acute rescue situations.
The NHS: Peripheral Neuropathy
Peripheral neuropathy develops when nerves in the body's extremities, such as the hands, feet and arms, are damaged. The symptoms depend on which nerves are affected. The peripheral nervous system is the network of nerves that lie outside the central nervous system (the brain and spinal cord). It includes different types of nerves with their own specific functions, including:
- sensory nerves – responsible for transmitting sensations, such as pain and touch
- motor nerves – responsible for controlling muscles
- autonomic nerves – responsible for regulating automatic functions of the body, such as blood pressure and bladder function
The main symptoms of peripheral neuropathy can include:
- numbness and tingling in the feet or hands
- burning, stabbing or shooting pain in affected areas
- loss of balance and co-ordination
- muscle weakness, especially in the feet
These symptoms are usually constant, but may come and go.
The main types of peripheral neuropathy include:
- sensory neuropathy – damage to the nerves that carry messages of touch, temperature, pain and other sensations to the brain
- motor neuropathy – damage to the nerves that control movement
- autonomic neuropathy – damage to the nerves that control involuntary bodily processes, such as digestion, bladder function and control of blood pressure
- mononeuropathy – damage to a single nerve outside of the central nervous system
In many cases, someone with peripheral neuropathy may have more than one of these types of peripheral neuropathy at the same time.
Relieving nerve pain
You may also require medicine to treat any nerve pain (neuropathic pain) you're experiencing. Unlike most other types of pain, neuropathic pain does not usually get better with common painkillers, such as paracetamol and ibuprofen, and other medicines are often used. These should usually be started at the minimum dose, with the dose gradually increased until you notice an effect. Higher doses may be better at managing the pain but are also more likely to cause side effects.
Many of these medicines may also be used for treating other health conditions, such as depression, epilepsy, anxiety, or headaches. If you're given an antidepressant, this may treat pain even if you're not depressed. This does not mean your doctor suspects you're depressed. The main medicines recommended for neuropathic pain include:
- amitriptyline – also used for treatment of headaches and depression,
- duloxetine – also used for treatment of bladder problems and depression,
- pregabalin and gabapentin – also used to treat epilepsy, headaches, or anxiety.
There are also some additional medicines that you can take to relieve pain in a specific area of your body or to relieve particularly severe pain for short periods.
If your pain is confined to a particular area of your body, you may benefit from using capsaicin cream. Capsaicin is the substance that makes chilli peppers hot and is thought to work in neuropathic pain by stopping the nerves sending pain messages to the brain. Rub a pea-sized amount of capsaicin cream on the painful area of skin 3 or 4 times a day. Side effects of capsaicin cream can include skin irritation and a burning sensation in the treated area at the start of treatment. Do not use capsaicin cream on broken or inflamed skin, and always wash your hands after applying it.
Tramadol is a powerful painkiller related to morphine that can be used to treat neuropathic pain that does not respond to other treatments your GP can prescribe. Like all opioids, tramadol can be addictive if it's taken for a long time. It'll usually only be prescribed for a short time. Tramadol can be useful to take at times when your pain is worse.
- The NICE Clincal Guideline: Neuropathic pain in adults: pharmacological management | November 2013 (updated September 2020).
- The ME Association has detailed information covering all aspects of pain management available to download from the website shop:
- The majority of people with ME/CFS will experience pain that will likely impact their functional ability and quality of life. In this leaflet, we discuss the various types of pain and how each can best be managed.
- We have specific leaflets on pain-relieving prescription-only medications:
- We provide information and practical self-help management tips on how to cope with most of the common sensitivities, intolerances, and hypersensitivities that can affect people with ME/CFS.
Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.