Search for a cause and diagnosis
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.
- Age at interview:
- Pensions administrator; married; 2 children.
I had x-rays done and I had a CAT scan and an MRI done. This showed that I had problems with 3 discs in my lower back but nothing that would warrant being operated on to sort of relieve the pain, it wasn't that severe, it was just continuous, and I think also if they had operated on one disc it would have put pressure on others. And it wasn't that I was sitting there particularly wanting to be operated on, I just wanted something done, I didn't care what it was, I just wanted something done.
How did it feel to be given the diagnosis but not a solution?
Well to get a diagnosis and no real solution at the end of it is really very disheartening, because you're looking to the professionals to come up with a solution, to come up with something that will make this better, something that will make this go away. You know, the advances in medicine now are fantastic, but why have I still got my pain? You now, why couldn't they do something?
Back pain, it doesn't seem like a terribly complicated thing to be able to treat. But it obviously is more complex than maybe many people realise and although advances have been made in certain areas of medicine, perhaps not the same, I don't know, research and sort of development of medicine in those areas have been made.
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.
- Age at interview:
- Age at diagnosis:
- Press officer; single.
With the diagnosis for the ME, it's always a difficult issue and so, what happened is, I went through a series of tests and basically they looked at issues such as anaemia, thyroid, that kind of thing because, according to the GP that I was seeing at that particular time, fatigue was the primary symptom of ME, whereas I was feeding back the information that fatigue wasn't my primary symptom, pain was my primary symptom, that was what they were looking for to identify a diagnosis.
And, when all my tests came back as borderline, but okay, ME was the solution that they came up with and that was now seven years ago and it's been a difficult issue because I've been living with a label of an illness which is very much misunderstood and, whilst I perhaps am going towards describing my disability as chronic pain, to others if you have a medical diagnosis which says you have ME, people assume that it is fatigue that you have and that.
I'm in a wheelchair on a regular basis, and using crutches on a regular basis, they can't understand that that's actually in relation to the disability that I have. So it's probably not a diagnosis that I'm that satisfied with, even seven years on.
You mentioned that it was kind of irrelevant now to have a diagnosis?
It might seem defeatist to say that I don't need a diagnosis. I guess if I'm honest, it would be nice if I did have an explanation for the pain. I think I feel it's irrelevant in terms of I have the symptoms that I have and I don't think having the diagnosis is going to magically make the symptoms go away.
That's why the diagnosis is not so relevant. Although it's always nice to have an explanation. I think the problem with the diagnosis I currently have is it's an actual form of avoidance of explanation. It's saying, we don't know how to explain this therefore we will call it that. I think that's the thing that's frustrating with my current diagnosis.
My point about relevance is I guess even if somebody was now to point out to me that I have a different diagnosis, I'm still disabled by the pain that I'm in and I don't think that anything is going to magically make that pain go away.
There's going to be no miracle cure and I think I would be naive to expect one. I think the main thing is to be able to accept that pain is part of my life and to carry on with it and to build strategies around it rather than saying well, when it goes away I will do this and I will progress my career and I will live my life to the full because I think you do have to live your life to the full around any illness or problems that you have in your life regardless of what they are.
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.
- Age at interview:
- Retired health visitor; divorced; 3 children.
Before I had the x-rays, I hoped that there could be some, something which could be done to relieve whatever was the problem. That showed that my spine was a mess, but it didn't show it in the same detail obviously as the MRI scan. I don't really think that I expected much to be able to be done because what can you do for a spine? Not a lot.
You know, if it's a hip or a knee okay, go through a nasty operation, but there is an expected recovery. Having a spinal problem there's less hope really of relief and less hope of a recovery. You just have to hope for relief rather than cure. I think one of the things that it made me do was realise that they're not going to cure me, it's not going to get better, it could get worse, so I've got to prepare for that.
- Age at interview:
- Studying art/ incapacitated nursery nurse; married; 2 children.
I wasn't surprised at all that my discs were damaged and I know that you get better from that. You know, people, there are hundreds of people, thousands of people with the same problem as me, who don't have the pain. I don't know why.
Some, you know most people, it's, you know, you get better. I'm better but the pain just hasn't stopped.
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').
- Age at interview:
- Senior trainer NHS Expert Patient Programme; single, living with long-term partner; 3 children.
Anyway, I went back to see the GP and he said 'Okay we'll send you to an orthopaedic consultant. Again that took time. That took another three, I think about three months actually to see him and it was in the days really when they were GP fund holders so they, they tended to move you around where all the money was.
So, where I went to see one consultant at one trust, my GP found he could get a better deal from another trust. So then I went from there to another hospital. Again I had to wait another two or three months to see him and, when I did actually see him, he advised, well he said well we'll send you for an MRI scan and my paperwork got lost and so I never had invit', well they said they sent me an invitation to have an MRI, but I never received it.
So, the best part of seven months later I did actually get to have an MRI scan and it showed up that I'd degeneration of the discs in my lower back, it's the two lower vertebrae and one in the centre. And what they'd shown it was more or less like bone was sort of rubbing on bone really. So, okay, but the words they used, okay I guess at the time frightened me.
They used this word 'Degeneration'. I was thinking 'God, well I've got something degenerative I'll just be really careful what I do'. So again I had this thinking 'Well, if I've got something degenerative I'd better not be too active in case I wear things out even more'. And they also told me that, when they showed me this, they said 'Oh your spine's like a digestive biscuit'. Again you know I, well I thought if I move at all I may make things worse. But, by not moving, as I found out later on, I was actually, was making things a little bit worse because I was becoming more and more de-conditioned.
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
Last reviewed May 2015.
Last updated May 2015.