Launched on 1 March 2022 during the Covid lock-down, the Swansea Bay Fibromyalgia Support Group is an Association that covers Swansea, Gower, Neath, Port Talbot and the surrounding areas.

History of the Group

When the Group was launched after a period of about ten years with no Group in the area, about 50 enquiries were expected. Over 200 people contacted our founder in the first few days. We now have over 450 members and the numbers increase by about ten each month. Our founder quickly realised he needed help, and a management committee was created from volunteers. Since then, the Group has gone from strength to strength.

We really understand fibromyalgia (fibro) and how it affects lives because we all have fibro or know someone living with fibro. The Group offers mutual support and information to people living with fibromyalgia and their families by:

Enabling contact between those affected by fibromyalgia through our meetings and our Facebook Group

www.facebook.com/groups/swanseabayfibro

Providing information through our English and Welsh websites

www.swanseabayfibro.wordpress.com  

www.ffibrobaeabertawe.wordpress.com

Promoting greater understanding and awareness of fibromyalgia and its effects by educating both patients and the public.

Promoting greater knowledge among healthcare professionals across Swansea Bay University Health Board about the problems faced by those affected by fibromyalgia. Gradually, we are being invited to participate in more areas where we can influence the provision of treatment options for fibromyalgia patients.

The Group is affiliated to the national charity Fibromyalgia Action UK (FMA UK), who provide us with insurance cover for our activities.

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What is Fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue, recognised by the NHS and Department for Work and Pensions (DWP). The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”. Fibromyalgia is a common illness. In fact, it is more common than rheumatoid arthritis and can even be more painful. Prevalence of Fibromyalgia: A Survey in Five European Countries (see www.fmauk.org/prevalence for details) put the prevalence of Fibromyalgia at between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold down a job or enjoy much of a social life. Few are able to work full-time and many have to stop work in their 40s or 50s.

The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. There are few treatments available and those drugs that do relieve symptoms often come with unpleasant side effects. People living with Fibromyalgia vary in age from 15 to 95. About 90% are female and 10% male.

Symptoms

Besides pain and fatigue fibromyalgia symptoms often include:-

• Unrefreshing sleep – waking up tired and stiff
• Headaches – ranging from ordinary to migraine
• Irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
• Cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
• Clumsiness and dizziness
• Sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
• Allergies

Diagnosis of fibromyalgia is time consuming. Part of the problem has been that the condition cannot be identified in standard laboratory tests, x-rays or scans. Moreover, many of its signs and symptoms are found in other conditions as well. It is not unusual for people living with fibromyalgia to spend 5 years seeking a diagnosis, and in some cases, it can be far longer.

What causes Fibromyalgia?

Fibromyalgia often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation or an emotional event. Sometimes the condition begins without any obvious trigger. The actual cause of fibromyalgia has not yet been discovered. Research has produced some insights into this puzzling condition. For instance, it is known that most people with fibromyalgia are deprived of deep restorative sleep, and a deficiency in Serotonin in the central nervous system has been identified. The brain registers pain when others might experience a slight ache or stiffness. During severe flare-ups people living with fibromyalgia can feel overwhelmed by pain, as their brain processes the pain signals from around their body, to the exclusion of everything else. It is hoped that more research will discover the cause and result in more effective treatment.

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What area does the Group cover?

We cover Swansea Bay, including of course Swansea, Neath, Port Talbot, Gower and the surrounding areas and Valleys. We have a few members from the Bridgend area and from as far away as Tenby and St David’s where there are no groups. People living with Fibromyalgia vary in age from 15 to 95. Nationally, 90% are women, and this is also true for Swansea Bay. Many have difficulty with mobility and this can lead to isolation and inactivity due to the pain.

What does the Support Group Do?

Support groups bring together people living with fibromyalgia and their families who share a common need for information, support, and reassurance and to meet others. Some of the benefits of attending a support group can be:

• Feeling less isolated, better mood, lower anxiety
• Finding reassurance and support from others with similar experiences in the local area
• Learning new information about fibromyalgia, its treatment and complication/side-effects
• Feeling empowered and more self-confident to cope with issues relating to living well with fibromyalgia
• Having the opportunity to find out more when newly diagnosed
• Having the opportunity to help and give support to others

We provide the following services to newly diagnosed patients or those living with the condition:

• Website and Facebook Group
• Access to information about relaxation and self-help techniques
• Information about benefits and discounts for disabled people
• Information sheets and newsletters
• Face-to-face meetings with social activities

The group stimulates members to make new friends, socialize and take part in a range of activities to help cope with the condition. We also publish a quarterly newsletter that helps our more isolated members to stay close to the Group.

How can I get Involved?

We all have fibromyalgia so there is a limit as to how much work the management committee can take on. We have recognised that fundraising is beyond our limited energy levels, so we are relying on grants and donations to keep the Group running.

We aim to hold an evening meeting at Llangyfelach Church Hall every month and another meeting in the daytime at different venues. Full details of dates, times and venues are published on our website. We use Llangyfelach Church Hall near Junction 46 of the M4 (accessible for Neath and Port Talbot) and our other venues are likely to be in Sketty and Baglan.

We welcome new members. You can sign-up online via our website. There is no charge to join the Group. We also need people to join our management committee to share the work, while ensuring it does not exacerbate anyone’s fibro.