From the South Wales Argus, 25 June 2013.
BARELY a year ago, Natasha Trew-Burns was working full-time in a nursing home.
Now the 28-year-old, from Bassaleg, but living in Newport, is unable to work and relies on a raft of medication to help control often intolerable pain, and enable her to keep mobile.
She is diagnosed with fibromyalgia, described by the Fibromyalgia Association UK as “a chronic condition of widespread pain and profound fatigue”.
Estimates of incidence in England and Wales vary widely, between 273,000-1.7 million.
Mrs Trew-Burns’ condition is further complicated by ME (Myalgic Encephalomyelitis) or chronic fatigue syndrome, which can affect the immune and nervous systems and muscles, again causing, amongst other symptoms, extreme tiredness and pain. This is estimated to affect 12,000 people in Wales alone.
The double diagnosis came last December, four months after persistent pain and joint problems became intolerable.
She requires crutches to help her walk, and has had adaptations made to her home to help her cope.
“Last summer things got much worse. The pain was all over my body, particularly my arms and legs. I’d had so much time off work I had to stop,” she said.
Tinnitus, jaw problems, sensitivity to light and noise, and difficulties with short term memory are among other symptoms, but pain presents the biggest challenge.
“That got unbearable last August. I had blood and other tests, x-rays, and I was diagnosed in December,” said Mrs Trew-Burns.
“The pain is difficult to describe. It can be like a dull ache all over, or very intense, very sharp, or like crawling with very bad pins and needles.
“It’s completely debilitating.
“One day you can feel OK and the temptation is to do a lot, but that hits you hard afterwards”.
Morphine, anti-depressants and a drug usually prescribed to treat epilepsy are among Mrs Trew-Burns’ daily regimen of medication.
Meanwhile, her condition leaves her feeling increasingly isolated.
“I’ve pretty much given up planning ahead because I might not be well enough when the day comes,” she said.
“That happened the other day and it’s hard, you feel like you’re letting people down.
“Lots of people don’t understand, or don’t want to understand, and that includes some in the medical profession.
“I’ve certainly found out who my friends are, but I’ve also made new ones along the way”.
Raising awareness and funds
THE unpredictable nature of fibromyalgia and ME means Mrs Trew-Burns and many others do not know how long they will be incapacitated.
Much remains to be discovered about both, such as causes, triggers, and how best to treat them.
Scepticism among some in the medical profession and the wider world, has led to sufferers being called lazy or shirkers, but slowly, greater understanding is being reached about the debilitating effects.
“Trauma and stress are possible triggers. My dad died a couple of years ago and that hit me hard, but I can’t say for sure if it was that,” said Mrs Trew-Burns. “It could be two or three years before my symptoms settle down and can be controlled.
“That’s hard, very frustrating. I can’t work, and I’ve always been a bit of a party animal, but not anymore.
At 28, to be like this, it’s horrible.”
Despite her situation Mrs Trew- Burns is organising, with help from family and friends, a fundraising and awareness day, proceeds going to two charities, the Fibromyalgia Association UK and Working for ME in Wales (WAMES).
“I was given one leaflet about fibromyalgia and coping with pain. I got no information about ME.
Most of what I know I’ve found out myself,” she said. “I want to make people more aware of these conditions and the challenges for people who have them.
“It’s hard work in the state I’m in, but I’ve got to do something.”
The event, including stalls, a prize draw, and information, is on Sunday, July 7, from 2.30pm, at Graig Community Hall, Bassaleg.
Anyone who can help out may call Mrs Trew-Burns on 07969 994643 or Denise Burns on 01633 896424.