Group’s third year

MY name is Nichola Bond and I run a support group for fibromyalgia sufferers. My group has been going now for two years and on January 17 we will be celebrating the beginning of our third.

There will be some exciting changes coming up in 2012 to improve the group and create more support.

There are thousands of people being diagnosed with this very painful, complex and debilitating disease and I know there are still people unaware of the support that is out there.

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Unfortunately, when you are diagnosed the NHS does not have the resources to offer patients, so they are left in an emotional limbo, unaware of how to cope with the pain, discomfort, life-changing experiences and a lot of other health issues that are a part of fibromyalgia syndrome, resulting in many sufferers eventually being unable to work.

Depression is a part of this and it just gets worse. The only support that is out there on the NHS is a 10-week pain management programme and six weeks’ hydrotherapy. Many have not adjusted to this disease and find these programmes unhelpful, especially at the beginning of diagnosis.

Support is very important to help people and their family, friends and careers, so they can learn about the disease, learn about their body, medications and how it affects them. There are others to talk to, and feel they belong.

Since the group started, we have launched a fantastic website, which is updated regularly, a monthly newsletter, library with CDs and DVDs as well as books. There are also talks and demonstrations, a helpline, and laughter, which is important at any time of life. We also have our own holistic therapist at each meeting who offers mini-treatments.

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In 2012, I will be offering one-to-one advice, referrals, home visits and an up-to-date research paper throughout the year, as well as more demonstrations and talks all to help the individual to understand the disease and how they can get the best from their day.

I have some great volunteers who come every month to help with the running of the group and do a fantastic job – I would like to say a big thank-you to them.

I hope there are others who could give a small amount of time to help at the meetings. I would love to start some fund-raising events to build up and reach others who are in desperate need of ongoing support. The money is needed for venues, printing, bands and all that goes with an event.

I know there are people out there who have the knowledge and drive to help us give support not only to sufferers but their families and friends. So please get in touch.

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The first meeting of the year is on Tuesday at Ferring Baptist Church Hall, Greystoke Road, Ferring, doors open at 6.30pm and the talk starts at 7pm. We have a refreshment break during the evening and finish at 9pm.

Our helpline number is 08448 872394 and our website is at

Nichola Bond

Organiser and co-leader

West Sussex and Worthing Fibromyalgia Support Group

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