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Woman describes condition as like 'having a headache all over your body'

Monday 24 February 2014

 

From UK newspaper the Littlehampton Gazette:

 

FMS-WAWS
 

Woman describes condition as like ‘having a headache all over your body’

23 February 2014 10:30

A WORTHING woman who suffers from a widespread musculoskeletal and fatigue disorder is appealing for volunteers for the support group she set up three years ago.

Nichola Bond, 49, of Roxburgh Close, was diagnosed with fibromyalgia around ten years ago, and also suffers from chronic fatigue syndrome ME.

She said: “I started the Worthing and West Sussex Fibromyalgia Support Group because I felt there was something missing in this area. People think that they will be able to cope with these conditions when they are first diagnosed but actually after a couple of years they begin to struggle.

“I knew that I needed support and wanted to help others in the same situation so I decided to set up my own.

“One of the hardest things for lots of conditions is that they are invisible so people do not necessarily realise you have them and cannot comprehend what we are going through.”

Mrs Bond’s conditions were triggered as a result of an operation she had on her spine at the age of 36.

She said: “Both of my daughters have it too which was heart-breaking, but it can be hereditary.

“The other things that can be a trigger are stressful situations and car accidents and I have also had both of these things unfortunately.

“The condition affects the whole body and also the brain.

“It is like having a headache but a hundred times worse and it is all over your body.

“We also get something called a fibro-fog where we suddenly cannot think clearly and sometimes cannot even talk.

“It is really unpleasant and it makes socialising very difficult.”

Mrs Bond says she relies ‘heavily’ on the interaction that she gets from other members of the group, which meets every month.

“Just listening and talking to other people and knowing that they really understand what you are going through makes a big difference,” she said.

“The group has 80 members and is so important because there are so many people out there who need such support.

“We cover a really big area because of a lack of other groups and I want to get the message out for those that do not know we exist.

“The most important thing is to give people hope and for them to come and share their own experiences with other people and find out the information that they need about living with and managing their symptoms.

“The group now offers one to ones and we are hoping to launch a daytime session because a lot of people cannot drive so meeting at night is difficult.

“There is no cure for fibromyalgia so it is about getting to a manageable stage.

“We are always looking for volunteers to come and get involved and it is very rewarding to help other people.”

For more information about the group go to www.fmswaws.org.

 

The above, with comments, originally appeared here.

 


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