A mother who says her chronic illness leaves her ‘not wanting to exist anymore’ is raising awareness of her condition to give others a better understanding of what life is like.
Clair Jones has Fibromyalgia, an incurable condition which causes chronic pain and triggers fatigue, muscle stiffness and memory loss.
Its exact cause is unknown – Clair’s symptoms began as a teenager, but took decades to diagnose.
It’s like a burning pain. Like someone sticking hot pokers into you. The pain is to the point where… you don’t want to exist – you really don’t want to be here anymore.Clair Jones
Fibromyalgia is a pain crippling condition often misdiagnosed and widely misunderstood.
Around one in 20 people are thought to suffer from it.
It is commonly considered an “invisible” illness but has a devastating impact on people’s lives.
What is Fibromyalgia?
Fibromyalgia is a long-term condition that causes widespread pain. Other symptoms include fatigue; muscle stiffness; problems with mental processes (known as “fibro-fog”); irritable bowel and headaches.
Its causes are unknown but are believed to be linked to chemical changes in the brain and wider nervous system, sometimes triggered by a stressful event. Some sufferers complain of slow or skeptical reactions from health professionals, employers and benefits officials.
Fibromyalgia pain can be felt as aching or burning, often described as head to toe.
It can be worse at some times than others and can change location, usually felt more severely in parts of the body used most.
The fatigue ranges from feeling tired to the exhaustion of a flu-like illness and can come and go with people describing suddenly feeling drained of all energy.
People with a mild to moderate case can usually live a normal life, given the appropriate treatment
But if symptoms are severe people may not be able to hold down a paying job or enjoy much of a social life.
The condition typically develops between the ages of 30 and 50, but can occur in people of any age.
And it affects seven times as many women as men, but it is not known why.
Clair’s son Alfie has Downs Syndrome and requires constant attention . When the fibromyalgia is at its worst, her daughter CJ has to step in as a carer for both of them.
CJ says: “It sometimes gets to the point where she cant get off the sofa or there are certain times when she is putting out food and her hands stiffen up to the point when she can’t move them herself so she just sits there and waits for the pain to go.”
Des Quinn from Fibromyalgia Action UK says it can be a challenge to prove to others you are suffering from the condition.
It’s pain that’s with you every single day but it is more than that. This invisible condition takes away people’s choices, it takes away people’s liberty- they are stuck in the house. It is devastating but you also have to prove or validate it to others.
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