'I wanted to end it': Mayor of Northampton opens up about living with fibromyalgia and setting up support group

The Mayor of Northampton is setting up a fibromyalgia group to raise awareness of the condition and offer support to those burdened with it.

Fibromyalgia, also known as fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body. Those who suffer from the condition typically experience increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, headaches and irritable bowel syndrome (IBS) - a digestive condition that causes stomach pain and bloating.

Councillor Rufia Ashraf has suffered with fibromyalgia for almost 13 years since the 'traumatic' birth of her son and she wants to do more to help others in the same boat.

She said: "After the birth of my son, it was a traumatic birth, I wanted to end it. I could not see myself being disabled, I could not manage my medication while my son was needing care around the clock. I do it for him. That is the only reason I get up and it hurts me to say that because all the things I did do before my son was born I almost feel I can't remember any of it.

"It was heartbreaking seeing my husband wash me, feed me and carry me around and he had three children to look after. It is the most awful pain you can imagine. It is very similar to child birth but worse because it does not leave your body."

The exact cause of fibromyalgia is unknown but it is thought to be related to genes or it can be triggered by a physically or emotionally stressful event such as giving birth, the death of a loved one or having an operation.

There is currently no cure for fibromyalgia but it can be treated with anti-depressants and painkillers as well as talking therapies, exercise programmes and relaxation techniques.

Councillor Ashraf continued: "No two days are the same because my body just won't let me get out of bed. The only way I can manage is through medication that helps me to sleep. Since I have had it, I can honestly say I have not had a proper sleep because the pain can be at any angle of the body.

"Its frustrating when people judge you and that can put even more stress on someone, therefore, we need to talk about it and raise awareness."

Councillor Ashraf used to go to a fibromyalgia support group in Northampton but it was disbanded in 2020. She now wants to establish a new one so that people living in Northampton with the condition do not feel they have to suffer through it alone.

Councillor Ashraf said: "People who do not have it won't understand that it can cripple you. People judge us by looking at us and thinking you're okay but it is a hidden disability.

"I want people to engage and get talking about it. The worse thing is isolating yourself and dealing with it on your own. What I am hoping to do is get the experts to come in and give us guidance and advice."

The mayor aims to get as many people living with fibromyalgia to reach out to her as possible and then set up a group, tailoring it to their needs. She wants to listen to people's stories and then get an idea of how often they would like to meet, what kind of support they need and whether they would prefer to meet face-to-face or over Zoom.

Statistics provided by the NHS show that the condition affects around seven times as many women as men and it typically develops between the ages of 30 and 50 but can affect people of any age. Estimates suggest nearly one in 20 people in the UK may be affected by fibromyalgia to some degree.

Anyone affected by fibromyalgia who wants to know more about Councillor Ashraf's support group can contact her by calling 07772414316 or emailing [email protected]