Search for a cause and diagnosis for chronic pain

Pain is a personal experience and therefore it is hard to show exactly how much pain a person is in. It is also often difficult to tell what is causing chronic pain. Some people are more vulnerable to developing chronic pain due to their genetics*. Psychological distress can also increase the risk of developing chronic pain, as well as making it worse. When pain persists for a period of time, changes occur in the nervous system and body that alter how pain is perceived (see ‘What is chronic pain?‘).

If the pain starts after an accident, an injury, or after surgery, people tend to assume that is the cause, even if their doctors cannot find any association or explanation for the continued pain. For people whose pain develops gradually, or comes out of the blue, getting a diagnosis appears to be the first step towards finding a treatment.

The timing and type of tests used to try to help find a cause for pain varies depending on where in the body the pain is felt, how the pain started and which specialists are involved. People we talked to had been referred to numerous specialists including rheumatologists, orthopaedic surgeons, gynaecologists and gastroenterologists, all of whom had their own sets of tests.

People who received a diagnosis had mixed feelings. Some found it a huge relief to have a confirmed physical problem, even though this didn’t mean that there was a cure. Others were shocked to find that nothing could be done to cure the pain. A woman told us that she was initially disheartened at the lack of a cure for an apparently physical problem but now realises that the treatment of chronic pain is complex.

Tests revealed changes to the discs in her back but they did not warrant surgery and she…

Age at interview 42

Gender Female

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People sometimes received a diagnosis that helped to explain their pain (e.g. lupus, osteoarthritis, arachnoiditis) or to find support groups and information to help them understand their condition (e.g. fibromyalgia). Others were frustrated to be told that there was no real diagnosis for conditions such as ‘bilateral wrist pain’, ‘low back pain’ or ‘chronic pelvic pain’.

They sometimes found it difficult to comprehend that modern medicine could not diagnose and cure their condition.

Many decided that they were better to accept the pain and try to live a normal life (see also ‘Coming to terms with pain’).

One woman who had a diagnosis of ME found it easier to tell people that she had chronic pain and felt that the diagnosis was irrelevant because she still has to live with the pain. Others felt that having more unnecessary and possibly intrusive diagnostic tests were a waste of time and unlikely to reveal anything new.

Feels that a diagnosis is in some ways irrelevant because she still has to live with the pain.

Age at interview 24

Gender Male

Age at diagnosis 18

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In the struggle to find a cause for the pain people were sometimes given possible diagnoses for their pain which were later ruled out, often when a treatment had failed to stop the pain. One woman said that it was easy to put your hope in a diagnosis but felt that it was important not to place too much emphasis on it in case the treatment didn’t work.

When pain persisted and tests continued to come back negative, people sometimes felt that it would be better if a test showed something up because at least they would know that the pain wasn’t ‘in their head’.

A few people felt that their doctors began to doubt them or were worried that other people would think they were just seeking attention. Occasionally people had been referred for a psychological assessment, which some found upsetting as it made them feel that the problem was being ‘dismissed’ as psychological. However, this was often not the case and people later discovered that the psychologist could help them understand the links between the pain, what they were thinking, what they were doing, and their emotions and there is some evidence that psychological distress can lead to developing chronic pain as well as making it worse (see also ‘Coping with the emotional impact of pain‘ and ‘NHS pain management programmes‘).

In some chronic pain conditions, often those involving the musculoskeletal system (back, neck and limbs) tests were not started until the pain had been around for a while. A number of people had been for X-rays but commented that the results had often not shown much. Plain X-rays are now not recommended for most cases of back and neck pain, however doctors have criteria for referring people for X-rays and will refer if necessary.

Several people with pain from the spine had been referred for an MRI scan. MRI scans are usually used to determine whether nerves leaving the spinal cord are being compressed by part of the spine or by scar tissue. People who were sent for an MRI were referred to an orthopaedic surgeon or another specialist who assessed them to determine whether an MRI was suitable.

Occasionally an MRI indicates that surgery is needed – only 1% of people who have positive signs on an MRI go on to have surgery and surgery is not recommended for pain relief (see also ‘Decisions about surgery’).

In some cases people told us that the damage was inoperable. In others it was uncertain that the changes on the MRI were the cause of the pain. Studies have shown that even people with pain-free backs can have abnormalities on an MRI scan just as apparently normal backs can produce pain – one woman told us that she wasn’t surprised to hear this.

Hoped that tests would reveal something that could be operated on but wasn’t surprised that it…

Age at interview 73

Gender Female

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Knows that even people that have no pain can have damage discs in their backs.

Age at interview 54

Gender Female

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Being told that their spine was damaged, degenerating or even crumbling or that they had ‘wear and tear’ was worrying for many and made them frightened to move in case they did further damage. A man who had been told his spine was ‘like a digestive biscuit’ had initially worried but now knows that it was safe to exercise and that inactivity was making him worse (see also ‘Exercise and activity’).

Had an MRI and was told he had degeneration in his spine and became frightened of moving which he…

Age at interview 49

Gender Male

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A physiotherapist, chiropractor or osteopath sometimes gave people a diagnosis of damage in the musculoskeletal system, such as a slipped disk, just by looking at them or feeling their back. Some people couldn’t understand why other medical professionals had not been able to do this.

*Williams FMK, Scollen S, Cao D, Memari Y, Hyde CL, Zhang B, et al. (2012) Genes Contributing to Pain Sensitivity in the Normal Population: An Exome Sequencing Study. PLoS Genet 8(12): e1003095. doi:10.1371/journal.pgen.1003095

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