Why do some people experience pain?

Lady in pain in the kitchen.

Professor Gary Macfarlane, Dean of Research and Knowledge Exchange at the University of Aberdeen tells us about his research, which is focused on developing better treatments for people living with pain.

“We’re approaching chronic pain from a variety of perspectives.”

The first thing we’re trying to understand is what causes pain. We want to try to understand why some people get chronic pain and fibromyalgia, and some people don’t.

The second thing we’re doing is looking at how to treat it, and we’re particularly looking at non-pharmacological therapies, which have shown some success in studies funded by Versus Arthritis. We’re now moving towards not just managing people and their pain but we’re also talking about preventing pain.

Importantly, we are also trying to transform services for patients with fibromyalgia because many patients tell us they wait a long time to be seen. They move around the healthcare system seeing lots of doctors, lots of specialties and it can be a long time for them to get a diagnosis. They then tell us that the support to move forward with their condition can be lacking.

“Versus Arthritis has just funded a five-year programme working with patients, researchers and clinicians”

The aim of the study is to do three things:

  1. Find out what is happening now. We’re going to map people’s journey through the healthcare system and look at how much that costs.
  2. Secondly, we’re going to sit down with clinicians and with patients and look at how we design services. What do patients want out of the service and what’s feasible? We are speaking to hospital managers and looking into what can we realistically put in place.
  3. Then, we hope to test it out in one or two NHS boards. We want to answer questions like - what happens if we have this new way of identifying a patient with fibromyalgia and we’re delivering preventative care? Do clinicians feel able to deliver the care they need to? What do patients think about it?

This project is being undertaken nationwide and involve all parts of the United Kingdom. There will be different parts of the research done in different areas.

Overall, around 1,000 patients will be involved, some will have fibromyalgia and will have received a diagnosis. Some will meet the criteria for fibromyalgia but will not have received a diagnosis. So, we’ll be looking at it from different perspectives.

“…we’re specifically trying to target not just the people that have had the condition for a while, but people that have perhaps been newly diagnosed.”

This could include people who are perhaps still in work, have young families and are trying to cope with all these demands. Different groups of patients may have different needs at different times – we need to understand this.

I hope at the end of the programme we’ll have a much better idea of the things that are critical to making the correct diagnosis and delivering good quality care for people.

Then, we will look at how it works in practice. Looking at – what works and what’s more problematic? What do we have to do? And, what’s been the effect? If we can show that patients have better outcomes with higher levels of satisfaction and that clinicians feel more confident in caring for patients with fibromyalgia , and I hope and believe that we can show it costs less money – then there is the possibility of promoting wider take-up.

“We know that making an early diagnosis is not as common as it should be”

Research has shown that patients can wait over 10 years to get a diagnosis of fibromyalgia. So, that’s 10 years where there’s been the opportunity to make an earlier diagnosis.

Individual patient’s journeys will be different, but one of the main things we know about pain is that you’re most likely to have a successful outcome if you intervene early. So, the longer people have had pain, the less you are likely to be able to promote a change.

What else is important?

In terms of effective care for people, I chair the EULAR European guidelines for fibromyalgia, and one of the things we recommend is that non-pharmacological therapies are very important.

People must understand what the condition is. For example:

  • The importance of exercise. What we mean by that is not saying to people ‘well, you need to exercise’ - but providing supported care so that people can, in a graded approach, undertake more physical activity.
  • Many patients with chronic pain are overweight and that’s because they have become more inactive because of their pain and they get into this vicious cycle of more pain and less physical activity.
  • Exercise therapy combined with behaviour therapy - the talking therapy, is about breaking out of that cycle. The results of using this approach has shown promising results.
  • We have to look at an individualised approach as sometimes with these therapies not everyone thinks a particular therapy is for them.

It is not a surprise that with non-pharmacological therapies, those which you have a preference for, believe will help you and therefore adhere to the therapy, are more like to be beneficial. I think that we’re going to start recognising people who, perhaps have fibromyalgia, but also people who have fibromyalgia-like symptoms. Research suggests that these symptoms (such as pain, fatigue, sleep disturbance, cognitive impairment) are part of a spectrum rather than there being a clear distinction between having them/not having them.

For the future, we can look to focus therapy even at these groups. Ultimately, it’s about prevention rather than waiting for the pain to become chronic and then treating it.

We’re here too

We’re here to help whenever you need us, and you can read more about Fibromyalgia.

Check out our free helpline and find out more about our services and support.