Young Adults with Fibromyalgia/CFS – a Pilot Study in Berkshire West

Increasing resources and providing a support network for vulnerable adults with fibromyalgia/CFS

The number of young adults diagnosed with fibromyalgia (FM), a condition that causes widespread pain and fatigue and loss of productivity, is steadily rising. Due to a variety of reasons, young adults continue stay more dependent on their parents and carers and Fibromyalgia/CFS and ME can aggravate the economic circumstances.

Present studies suggest that FM could constitute as much as 5% of the UK population. There are some estimates that suggest juvenile-onset fibromyalgia affects 2-6% of school children, mostly adolescent girls. It is most commonly diagnosed between ages 13 and 15.

Since transition to adult services occur locally around the age of 17, it is unclear what support is provided, what general understanding exists of this condition and how the condition is often managed.

Little is known about the prevalence of this group and what resources and support is available to them and their carers/parents in our local area.

We wish to perform a pilot research survey amongst local practices and the West Berkshire area

1. to establish a baseline number suffering with this condition
2. what their awareness of this condition is
3. what resources can they access
4. what their mental health and well-being is
5. what support has been provided to them and their carers

Many patients (up to 75 percent) will have a family member with a diagnosis of fibromyalgia. If recognised and managed early, the symptoms can improve. It is important to note that some patients, evaluated several years later, no longer experience enough symptoms to meet the criteria for fibromyalgia. However, this is a condition which seems to come and go throughout life.

We feel that people with FM need to pay careful attention to sleep, exercise, and stress levels in order to decrease symptoms of fibromyalgia. With careful attention to a balanced lifestyle, people with FM can live very happy and healthy lives with good quality of life and successful personal and professional lives.

There are good resources and support for adult patients with FM in West Berkshire and we wish to raise awareness of these resources for young adults. We also would like to evaluate the present demand for pain service support and the outcome of this project can help in increasing our resources to this area for our patients.

By accurately assessing the prevalence of this problem, we can tailor and improve resources and increase awareness amongst healthcare professionals and patients and their carers about self-management strategies and what they can access from the NHS in West Berkshire. With the diversity that is present, we can also look to ensure the relevant resources are culturally sensitive.

We anticipate that with the deployment of the above options, better use of the expert patient support group will be possible and local community engagement can be strengthened.

We can also use a variety of methods to help these young adults occupationally and help them lead more productive and successful work lives.

Existing services both in primary care and secondary care can be improved and tailored to help this younger population both mentally and physically.

I am the lead for the department of Pain Medicine at the Royal Berkshire Hospital and I am also the main consultant working with our community Pain service (IPASS) which provides support for fibromyalgia patients. Both within IPASS and at the RBH, we provide specialist pain physiotherapy and psychology support on an individual basis and also we run group programmes. Based on the results of the project and the demand, we can request for more services to be commissioned locally to meet the demand and to provide high quality treatment to improve quality of life.

We are looking for volunteers to come forward and help with the project. We would value your contributions and comments in terms of how you have been managing to look after yourself if you have the diagnosis. If you have looked after someone, we would be interested to know what help you might need and when that is needed. We would also welcome expert patients who can help others like yourself with tips and advice that can be disseminated to others. We also welcome volunteers who can help create digital resources (online website/social media) etc to help spread the message. We have a very active Patient FM support group that you can be part of and they would be glad to have more younger people from the Newbury and West Berkshire area.

Deepak Ravindran

Fibromyalgia/CFS Questionnaire

Please download, print and complete our questionnaire and hand in to Reception.