Chronic pain sufferer plans to help others in Leeds

By Ria Taylor


Fibromyalgia sufferer Natalie-Asha Comrie discusses her big plans to help improve the lives of others.

It’s thought that around 43% of people in the UK suffer with chronic pain.

To put that into context – about 28 million adults in this country are living with constant pain, that has suffered for three months or longer.

Fibromyalgia, which is also known as fibromyalgia syndrome, is a long-term medical condition that causes severe widespread pain, fatigue and muscle stiffness. It can also cause other issues, such as: difficulty sleeping, headaches and problems with memory and concentration – known as ‘fibro-fog’.

What do you do when your illness is invisible to others, and people just don’t understand?

Natalie-Asha Comrie, age 35 from Leeds, suffers with fibromyalgia, as well as other chronic disorders which have a massive impact on her life.

“Although many people suffer and live with fibromyalgia in Leeds, there seems to be an absence of resources and information,” Natalie said. “This develops stigma and negative social attitudes, which makes those living with the illness become further isolated.”

Her mission? To help improve the lives of others suffering from fibromyalgia, by offering a support system where people can share their ideas and try to manage their conditions more effectively.

“My plan is to create a safe, open and honest place for those with chronic conditions to support each other, share ideas and try to promote awareness socially,” Natalie told Leeds Hacks. “I also want to bring together practical ways to manage the illness, and provide sufferers with access to services and activities that their illness might sometimes exclude them from.”

As far as we know, there is no cure for fibromyalgia.

The NHS website suggests that “nearly 1 in 20 people may be affected by fibromyalgia to some degree”. An estimate for an exact number remains unclear because it is an extremely difficult condition to diagnose, as the symptoms can be similar to many other conditions.

 

“I wouldn’t wish this on my worst enemy.”

Emily Thorpe first noticed symptoms of fibromyalgia around eight years ago – but was only diagnosed earlier this year.

But unlike Natalie, Emily doesn’t see the need for a support group, as she thinks fibromyalgia sufferers might struggle to actually attend them.

“It would be difficult for people to consistently go to them due to flare ups,” she said. “Sometimes I don’t get out of bed for a day.”

“But there does need to be more awareness,” Emily added. “So many people just think I’m lazy. Because it’s not obvious that I have an illness, most people just don’t believe me.”

The 25 year-old from South Leeds has to endure pains in her joints almost daily, and feels extreme exhaustion if she overworks herself.

“It took me eight years and a lot of foot stamping to get a diagnosis,” Emily told us. “The easiest way to describe it is to stay awake for five days and run into a wall a few times. That’s how I feel most days!”

Person holding a hot water bottle to stomach.

Fibromyalgia is a chronic pain condition, and affects around 7 times as many women as men, according to the NHS.

Fibromyalgia is about management rather than a cure

Tom Mattimoe, a Biomedical Sciences graduate from the University of Sheffield, acknowledges Natalie’s demands for more research and awareness.

“Support groups would likely benefit individuals suffering with fibromyalgia, especially as the condition is closely linked to stress and depression.”

“Further research into its genetic basis would greatly increase our understanding,” said Mr Mattimoe. “However, we must consider the complexity of the condition before we get excited about a new genetic therapy for fibromyalgia.”

Mr Mattimoe also said it’s important to “address lifestyle factors which may be worsening the individual’s condition”, such as lack of exercise or poor diet.

“We are currently focused on the management of fibromyalgia, rather than a cure.”

Advice to those suffering with chronic pain

“Educate yourself,” Natalie advised. “Seek out impartial, medically factually information.”

She noted that because each case is unique to the individual and symptoms can vary, it’s important to “listen to your body.”

“Keep it positive,” she said to finish. “Be your own fibromyalgia ambassador.”

About the Author

student
This article was produced by a student or students on the BA in Journalism at Leeds Beckett University.

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