Living with chronic pain

This guide is psychoeducational content. It does not replace a consultation. It complements medical care and does not take its place. See a doctor promptly if your pain is new, or if it clearly changes in nature, location or intensity for no apparent reason; if it comes with fever, weight loss you cannot explain or unusual tiredness that sets in; if weakness, numbness or pins and needles are spreading in an arm or a leg; if new bladder or bowel problems appear, such as difficulty passing urine or loss of control of your bladder or bowels, or if you have less feeling in the skin around your genitals or anus; if a headache of a new kind comes on suddenly and very severely; or if the pain appears after a fall or a blow. These signs do not mean that something serious is going on: they mean that a doctor needs to take a look, and quickly. If you are thinking about dying, if you feel you are a burden to others, talk about it the same day to your doctor or to someone close to you; in immediate danger, call the emergency services in your country. Never change a prescribed treatment on your own, especially a strong painkiller: any reduction or stopping is decided with the doctor. Allow fifty minutes to read.

1. Before you begin

In the morning, before you have even opened your eyes, you take stock: your neck, your lower back, your shoulders. Within a few seconds, you know what kind of day it will be. You have seen your doctor, a rheumatologist, a physiotherapist; the X-rays are "normal for your age", and so is the blood test. Someone told you, with the best intentions in the world, that it was probably stress. You came home with an odd kind of anger, because you know what you feel.

On good days, you catch up on everything: the shopping, the housework, the garden. The next day, you pay for it. On bad days, you stay lying down and wait for it to pass. You gave up hiking, then dancing, then the dinners where you sit for too long. You no longer really say how you are, because the answer has not changed in two years.

Three things, straight away.

Your pain is real. All pain is produced by the nervous system, whether or not any damage shows up on the tests. Normal results do not mean there is nothing wrong with you; they mean the cause is not damage that those tests are able to show. Nowhere does this guide claim that your pain is "all in your head".

When pain lasts, it no longer works like an ordinary alarm. Acute pain signals an injury and switches off once the injury heals. Pain that persists for months can come from a system that has become more sensitive, and it varies with sleep, fear, mood and what you do with your days. Several of these levers are within your reach.

You can live better even when the pain does not go away. This is one of the messages that the main British guideline asks healthcare professionals to pass on. The approaches described here reduce pain modestly, and act more on what it takes from you: your activities, your sleep, your mood, your relationships. We say this plainly, because you have probably heard too many promises.

Who this guide is for

For you if you have been in pain for more than three months, in your back, your joints, your head or more or less everywhere, and the pain has taken up a place you no longer want to give it.

For you if you have been told about fibromyalgia, chronic low back pain or "chronic primary pain", and you want to understand what these words cover.

For you if a known condition partly explains your pain (osteoarthritis, rheumatoid arthritis, endometriosis, the after-effects of an operation) and treating it is not enough to give you your life back.

For you if you live with someone who is in pain and no longer know whether to encourage them or protect them: section 16 is written for you.

2. What chronic pain is

A question of duration

The World Health Organization's International Classification of Diseases, in its eleventh revision, calls pain chronic when it persists or keeps coming back for more than three months. The threshold is a convention, but the question then changes: you no longer ask only what is causing the pain, but also what is keeping it going.

Two families, which often overlap

When an identified disease accounts for the pain (osteoarthritis, rheumatoid arthritis, nerve damage, the after-effects of an operation), it is called secondary chronic pain. When no disease is enough to explain it, or when the pain and the difficulties it causes are out of all proportion to what the tests show, it is called primary chronic pain: fibromyalgia belongs here, as do many cases of so-called non-specific low back pain and some pain in the neck, the abdomen or the head. The classification proposes regarding it as a condition in its own right, and not simply as a symptom of something else.

The two can coexist, and a diagnosis can change over time: that is why any change in your pain is worth reporting to your doctor.

"Primary" does not mean "imaginary"

This is the most hurtful misunderstanding: "we found nothing" is heard as "there is nothing wrong with you". Guidelines acknowledge that the mechanisms of chronic primary pain are only partly understood. That does not mean nothing is happening; it means that what is happening does not show up on an X-ray.

You are far from alone

A survey carried out in fifteen European countries and in Israel, among more than forty-six thousand people, found that about one adult in five had had pain of moderate to severe intensity for at least six months. A majority of them said they were less able to work outside the home, or no longer able to at all, and very few were being seen by a pain specialist.

Many people say that the hardest part is not the pain itself, but no longer recognising themselves. The British guideline asks healthcare professionals to acknowledge openly that living with pain is hard: that is the starting point for everything else.

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