New Booklet: Pain Management in ME/CFS by Dr Charles Shepherd

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has written a new booklet on Pain Management in ME/CFS. It can be purchased for £1 from the website shop along with a full range of literature covering other important topics including more detailed information on prescription drugs for pain relief that Dr Shepherd also refers to in this new booklet.


Although a small but significant minority of people with ME/CFS experience little or no pain during the course of their illness, the majority – probably around 75% – do. When pain occurs, it can do so in several different forms and with varying degrees of severity.

Knowing what causes pain in any condition can obviously be very helpful in the way it is managed. However, in the case of ME/CFS, no significant research has been carried out into the cause. We therefore know very little about why some people with ME/CFS suffer severe and persistent pain and others have low levels of pain or no pain at all.

When it comes to pain management, the best we can do right now is to work on the basis that there may be faults in the way in which messages about pain from various parts of the body – muscle, joints, abdomen, etc – are transmitted up the spinal cord to centres in the brain that control how we respond to pain.

Equally, it’s also possible that the way in which these pain control centres in the brain dampen down pain is also at fault. And this is why, in addition to conventional pain-relieving drugs, doctors sometimes prescribe drugs that normally have other uses but affect chemical transmitter systems in the brain.

Despite pain being such an important part of ME/CFS, this is one symptom that tends to receive very little attention in medical descriptions of the illness. Consequently, pain is a key symptom that is often not managed very well by health professionals.

What sort of pain occurs in ME/CFS?

  1. Muscle pain (myalgia)
    Can be intermittent or continuous and/or be very similar to the sort of pain which occurs in fibromyalgia – an often-overlapping condition where there are localised tender points as well as more generalised muscle and joint pain. Muscle pain can also just occur, or be exacerbated, following exercise. It is sometimes accompanied by visible twitching of the muscles (fasciculations), cramps or involuntary jerking movements (myoclonic jerks) of the limbs.
  2. Joint pain (arthralgia)
    Is less common than muscle pain and should not be accompanied by any swelling, redness or deformity of the affected joints. If it is, investigations should be carried out to exclude the possibility of a rheumatological disorder such as rheumatoid arthritis or lupus/Systemic Lupus Erythematosus (SLE).
  3. Nerve pain (neuropathic pain)
    Is often described as a burning, searing, shooting, or stabbing sensation. Sometimes a painful response to a non-painful stimulus occurs – such as being unable to sleep because touching the bedclothes on the skin is unbearably painful. This type of neuropathic pain is known as allodynia. Nerve pain can be accompanied by other neurological symptoms such as pins and needles, sensations in the skin (known as paraesthesiae) or patches of numbness (hypoaesthesiae).
  4. Headaches
    Are a common symptom in ME/CFS and may have a migrainous character to them. However, headaches can have many other causes. So, if headaches occur as a new problem, or become more severe or persistent, you should have a check-up with your GP. This aspect of pain is covered in our information leaflet on headaches.
  5. Irritable bowel syndrome (IBS)
    Is fairly common in people who have ME/CFS and can cause cramp-like abdominal pain. This aspect of pain is covered in our information leaflet on IBS.

There is also a wide spectrum in the severity of pain reported in ME/CFS. At one end of the spectrum are people whose pain is only intermittent or mild. For others, pain is severe, constant and intrusive – as a result it forms the most disabling part of their illness.

Unrelieved pain is likely to impact on sleep and may lead to depression. Not surprisingly, this can then produce a vicious circle because disturbed sleep and/or depression will inevitably make the pain worse…

Topics covered in this booklet

  • What sort of pain occurs in ME/CFS?
  • Red Flags
  • General principles of pain management
  • Over-the-counter drug treatments
  • Prescription-only drug treatments
  • Alternative and complementary approaches
  • Non-drug methods
  • Hospital pain clinics
  • The NICE Guideline on ME/CFS and The NICE Guideline on Neuropathic Pain
  • Further information
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