A fledgling support group for people with a condition that causes pain all over the body is attracting increasing numbers of people. The Boston Fibromyalgia Support and Social Group was formed by sufferer Siobhan Bernadin, 53, of Wrangle, who wanted to reach out to others in her situation.
When you are in so much pain and feel you can’t go on any more, it can help just to have other people say ‘I know how you feel.
Getting a fibromyalgia diagnosis can be very difficult and once you have it, it seems like you quickly get to the point where you go to the GP and they look at you as if to say ‘what else do you want me to do?
It’s a condition that is still little understood and to speak to someone else who knows what living with it is like and believes you when you describe how it feels, is just pure relief.
Mrs Bernadin launched the group informally in November by announcing a first meeting at a Boston hotel. She hoped to find one or two others to share her experiences with and was astounded when 18 people turned up.
Mrs Bernadin quickly realised she was going to need to establish a more formal meeting place and find a way to cover the cost of the meeting room. She turned to Lincolnshire Community and Voluntary Services (LCVS) for guidance on how to get the paperwork and governance of the group in order to avoid any financial or bureaucratic pitfalls and the group is now regularly attracting 20 plus people.
The exact cause of fibromyalgia is unknown, but in many cases it appears to be triggered by a physically or emotionally stressful event.
Mrs Bernadin suspects hers dates back to a serious fall from a horse almost 20 years ago, though she was only diagnosed with fibromyalgia around eight years ago.
She suffers many of the typical symptoms including extreme tiredness, difficulty sleeping and occasional problems with mental processes, which she and others describe as fibro-fog. It leaves sufferers scrambling for the correct words or unable to concentrate.
Many sufferers are unable to work at all or can only manage part-time hours. For Mrs Bernadin, working full time means accepting she cannot expect to do anything else during the week apart from rest. She relies on the support of her family to keep up with domestic tasks. If she wants to go out during the evening at the weekend, she knows she must rest all of the day before.
Traditionally, fibromyalgia has been linked to a map of tender points throughout the body where extreme pain is felt. They can vary from person to person, but often include points around the neck, collar bones, knees and elbows.
Mrs Bernadin said:
If someone presses on the tender points, it’s the worst pain. Some days I can’t even bear for my husband to give me a hug.
Sometimes I feel like I am being squashed with a vice and no amount of painkillers will take it away. We have to learn to live with it.
The Boston Fibromyalgia Support and Social Group meets the second Wednesday of every month, 7pm to 9pm at the Len Medlock Voluntary Centre, St Georges Road, Boston.
The next meeting is due to take place on Wednesday, March 11, when the guest speaker will be Lynne Patrick, LCVS health trainer, discussing healthy eating and exercise for fibromyalgia sufferers.
An attendance fee of £1 per month is charged, payable in advance from the first attendance for that month and the following months up to the end of the financial year. An additional charge of 50p is made for refreshments.
Find The Boston Fibromyalgia Support and Social Group on Facebook.