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Living with Pain and Chronic Fatigue Syndrome/ME Service

The Living with Pain and CFS/ME Service is a well-established service for people with long-standing (chronic) pain and/or Chronic Fatigue Syndrome/ME. We provide outpatient help to understand these difficult conditions, to minimise pain, fatigue and associated symptoms where possible, and maximise quality of life. We are a multi-disciplinary service made up of physiotherapists, occupational therapists and psychologists.

Chronic pain

Most pain is short term or ‘acute’ and is there to warn us of injury or illness. Once this has resolved, the pain usually goes too.

Pain which is more persistent is known as ‘chronic pain’ and lasts beyond normal healing. This is usually defined as pain that has lasted for more than three months. Chronic pain can be constant or can come and go. This is often despite medical and other treatments.

Although chronic pain is real, tests to identify damage can often come back negative or don’t give a clear explanation or diagnosis for the pain. This can be frustrating and people may feel that they are not being believed, that more tests and treatments should be carried out, or that their pain is not being taken seriously.

In fact chronic pain is a very common condition with a massive impact in the UK and worldwide. In recent years people have begun to treat pain as a diagnosis in its own right. Increasingly, neuroscience research can explain what has happened to the nervous system to cause chronic pain. Changes in the physical nervous system can mean it continues to behave as though there is ongoing disease or injury even when this is not the case, so the person still experiences pain.

There are a number of different types of chronic pain. Some of the most common types we see are:

  • Chronic widespread pain, including fibromyalgia;
  • Complex regional pain syndrome
  • Musculo-skeletal pain
  • Neck/back/spinal pain
  • Nerve (or neuropathic) pain
  • Abdominal or pelvic pain
  • Pain associated with gynaecological conditions
  • Facial pain
  • Headache
  • Chest pain
  • Pain associated with rheumotological or hypermobility conditions
  • Pain associated with neurological conditions such as multiple sclerosis or stroke
  • Post-cancer pain

Chronic Fatigue Syndrome/ME Service

Chronic Fatigue Syndrome/ME is a long term condition characterised primarily by severe fatigue which affects the ability to do everyday tasks. CFS/ME is usually diagnosed when fatigue is clinically unexplainable and cannot be attributed to another clinical condition, severe obesity, drug/alcohol dependence or a severe mental health condition. People with CFS/ME usually have a range of other symptoms associated with fatigue including problems with sleep, thinking or memory (sometimes called ‘brain fog’), pain throughout the body or in one specific area and flu-like symptoms.

Managing symptoms

People who have had pain and fatigue for a long time often find it affects their lives in many different ways. Some common difficulties are:

  • Not being able to continue with hobbies and sport
  • Feeling stiffer and weaker or generally out of condition
  • Finding it difficult to manage work
  • Not being able to make or keep plans at work or home
  • Not being able to take part in social activities
  • Finding it difficult to deal with increases in pain or fatigue and flare-ups
  • Finding it difficult to sleep or sleeping too much
  • Worrying about pain or fatigue and the future
  • Loss of self-confidence and feeling low
  • Not being able to explain pain or fatigue to others or feeling they don’t understand

In the past, health services were largely focused on the biological (the structure of the body and its systems) aspects of ill health. But over the years there has been an increasing understanding of the relationship with psychological and social factors like those above. In fact, all three areas are important in the overall experience of pain or fatigue, and this is referred to as the Biopsychosocial Model. Modern management of symptoms uses this model as its base.

This means that the Living with Pain and CFS/ME Service works to improve your quality of life by looking at all aspects of your pain or fatigue and how to manage it.

How the Team works

We are an outpatient service. Once a referral is accepted, we will send you some questionnaires to complete and return. This information helps us decide who you need to see in our team. We will then send you a first appointment. If you are seeing more than one member of the team this appointment may last two or three hours.

Please note that we have a waiting list for appointments. However, as a team we understand that it is distressing for people with pain or fatigue to wait for appointments and we do our best to keep our waiting lists as short as possible.

If you are unable to keep an appointment please give us at least 48 hours notice so that we can offer it to somebody else.

Patient experience

Recent feedback from a patient:

“Also, I would like to say a huge thank you for all your hard work. It has set me on a path of self care and self help and opened my eyes to a great many valuable coping strategies. It has also introduced me to a wonderful new friend, who I now meet up with regularly. We are currently taking a weekly Mindfulness yoga class near her and are also planning a weekly swim near me.”

Locations

We see patients by video-link and at Harrogate District Hospital, Mowbray Square Medical Centre, Skipton General Hospital and Ripon Community Hospital where this is most suitable for the patient.

If you have an appointment with us please check your letter carefully to ensure you have the correct location which may not always be Harrogate District Hospital.

Referral

We take referrals from GPs, hospital consultants and specialist musculoskeletal services. If you think we might be of help to you please discuss with your GP.

Referrals for CFS/ME must include the results of an up-to-date blood screen for CFS/ME as recommended by the National Institute for Health and Care Excellence (NICE). This is intended to screen out any underlying condition which may require separate medical treatment.

Key staff

Physiotherapists: Steve Bathe and Gill Fearnley

Occupational Therapists: Julie Robinson and Susan Rathmell

Clinical Psychologists: Dr Georgina Caton, Dr Zoe Tillotson and Dr Sharon McKenna

Administrators: Anita Curtis, Krystyna Wappett

Useful links

  • The British Pain Society – this is the national society for pain professionals and has a number of useful publications and resources for patients. Their booklet, ‘Understanding and Managing Pain’, can be downloaded free of charge (or telephone for a paper copy).
  • Pain Toolkit – contains practical and easy-to-follow advice written by Pete Moore who lives with chronic pain himself.
  • Arthritis Research UK – this charity offers  a large range of information and downloadable booklets about a variety of types of pain.
  • Pain Concern – a UK based charity for those living with Chronic Pain and those who care for and about them.
  • Tame the Beast – information and advice on understanding your pain.
  • NHS Overview of CFS/ME – a summary of the key approaches which can help with managing CFS/ME
  • The British Association for CFS/ME – a national organisation for information about healthcare for CFS/ME