This page is an introduction to living with and supporting people with persistent physical symptoms. You will find videos, resources, websites, real life experiences, information, and a link to e-learning developed for staff (although, anyone may find this e-learning helpful).
What do we mean by ‘persistent physical symptoms’?
Persistent physical symptoms are symptoms that are there some or all of the time, and that can be difficult and challenging to live with. They are caused by changes in the way the body is functioning. Sometimes patients have an underlying health condition that triggers the symptoms, and some people just have the symptoms by themselves, in what are known as ‘functional disorders’. The symptoms are often not treated by a simple tablet or operation. If you have tonsillitis (the disease) you might then have a sore throat (the symptom) and antibiotics is the treatment. If you have chronic back pain, things become more complicated. In this situation there is often no underlying damage that is causing the pain, or the damage that triggered the pain is healed. Treatments such as back surgery or painkillers do not work well. So then you have a persistent symptom (in this example back pain) that needs a different approach to help that person reduce down and manage the pain, and most importantly, regain quality of life. Regaining quality of life with symptoms is the key goal, not necessarily getting rid of the symptoms.
Some examples of functional disorders covered by the persistent physical symptoms term include:
Functional neurological disorder
Functional neurological disorder is a term that covers many different symptoms. For more information on the symptoms that functional neurological disorder relates to, please visit the below website:Visit Functional Neurological Disorder (FND) a patient’s guide
Following a car accident, Scott’s mental and physical health suffered; two years later he was diagnosed with post traumatic stress disorder and functional neurological disorder, which limits the movements down his right-hand side, affecting his balance and speech. Scott then embarked on a mission to complete the Great North Run using a walking frame. You can watch Scott’s story here:Watch Scott’s Story
Why do I need to know about this?
Functional disorders are really, really common. On average about a third of outpatient consultations consist of patients with all, or mostly, functional symptoms.
But aren’t these symptoms all in the mind?
These symptoms are real, not imagined. Many people with persistent physical symptoms are told that the symptoms are ‘all in their mind’, or there is nothing wrong as tests are normal, or that they must be making it up. All these ideas are both wrong and damaging for patients.
A good way to explain what is going on is to understand that tests are designed to look for damage in the body. But in these disorders there isn’t a damage issue, the issue is how the body is functioning and communicating within itself. It’s like when a mobile phone has too many apps open. It may not work properly, or crash. The phone itself (the hardware) is fine, but there is a problem with the apps (the software) that needs sorted out.
OK, so what causes these symptoms?
There are lots of things that can change in the body when you have persistent symptoms. There can be changes with how the brain communicates within itself and with the body, there can be changes with the communication systems themselves – the nervous system, endocrine system, musculo-skeletal system and immune system. A simple example might be a headache; the cause might be muscle tension secondary to poor posture in front of a computer for hours. This wouldn’t be seen on a head scan, or any other test, but the muscles are tense, the headache is real (not imagined) and a good stretch and a walk to loosen off muscles often really helps. This is an area of medicine that is rapidly expanding and mechanisms for symptom development and maintenance are growing all the time. As we understand more about the specific ways that symptoms occur, we can then tailor treatments to help.
What is it like to live with these symptoms?
What about treatment?
The most important thing is to work out with someone how to regain quality of life with symptoms. Using key techniques such as pacing and grading activity, exercise, behavioural activation, supporting routine, psychological therapy and learning what individual triggers are for symptoms are all key components of treatment.
What happens if someone also has depression or anxiety, what needs to be treated first?
For people who also have depression or anxiety, the best thing is to combine approaches. For example, if someone has depression, but also back pain, working with the pain and depression together is far more helpful than separating the conditions. Separation can lead to ‘I can’t treat the pain because of the depression’ from one team and ‘I can’t treat the depression because of the pain’ from another team. Both depression and pain benefit from paced and graded activity, structure and routine, and identification of triggers around what makes things better and worse. Putting the approaches together is far more helpful for patients.
Managing Persistent Physical Symptoms
In the following videos patients tell us their top tips for managing persistent physical symptoms.Watch videos
Where can I find out more?
Scott and Laura are both living with persistent physical symptoms. They have provided their own reviews and opinions of a number of apps and websites, which provide information and resources for those living with persistent physical symptoms. From here you can also access the websites they are reviewing.
Click the button below to read their website and app reviews.
Recovery Strategies Pain Guidebook:
The below leaflet is designed for professionals to use with service users:
The below video has been developed for staff:
For some people, worry and concerns about symptoms can be disabling and this can develop into health anxiety. Here is a helpful patient video about what this condition is, and how to manage it (once on the website, scroll down for the video):Visit Aarhus University website
Finding out more for professionals
New e-learning with virtual patient experience
To learn more about how to diagnose, understand and treat persistent physical symptoms, ‘E-learning for Health’ along with ‘Health Education England’ developed interactive e-learning to help professionals improve how they support patients day to day. At the end of the e-learning you get to practice your new skills on a virtual patient, who will talk to you about their condition and you will provide them with a consultation. You will get feedback at the end to see how well you did.
To access this e-learning click the button below, or go through ESR, where it will count towards your training record and CPD points.Visit e-learning
Real Life Experience
If you would to share your real life experience of living with persistent physical symptoms, please contact [email protected]