It took four years and countless visits to the doctors before Zoe Stanmore was diagnosed with fibromyalgia – a condition she has now lived with for 13 years.
The condition means Zoe, 42, from Southport, can experience bouts of “excruciating pain” in different areas of her body as well as overwhelming tiredness.
But because she suffers from an invisible illness, Zoe feels there are times when she has to justify herself otherwise people could label her has lazy.
Zoe said: “A lot of people will see me from the outside and think she’s outgoing and bubbly but they don’t know what’s going on inside, and that’s what it’s like with an invisible illness.
“There was one doctor who sticks in my head – it was right in the middle of me dealing with the condition.
"I went in one day when I was really struggling and asked for a pain medication review.
“She told me to go away as it was all in my head.
“Luckily I went back and saw another doctor and got referred to a pain clinic and they managed to help me to where I can live as I do now.
“If a doctor had said that to me at the beginning of my journey – that it was all in my head – that could have had terrible consequences.”
Fibromyalgia is a complex condition characterised by chronic widespread pain, tiredness, sleep problems and troubles with memory along with other symptoms.
Its exact cause is unknown, but according to the NHS, it's thought to be related to “abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body.”
Zoe said: “When I was diagnosed with fibromyalgia 13 years ago it wasn’t as well known as it is now.
“I first went to the doctor because of a pain in my pelvis and hip, uncontrollable tiredness and a lack of energy.
“It took about four years of going back and forth to the doctors. I had blood tests and x-rays and they couldn’t discover the source but the pain was unreal.
“There were days when even just sitting down resting would just be agony.
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“The pain is one thing and the tiredness is another, but then there’s the fibro fog when your brain doesn’t seem to work correctly.
“It can affect the muscles in your eyes – there are so many things that can come with it.”
It's thought that some people are more likely to develop fibromyalgia because of genes inherited from their parents but in many cases, the condition appears to be triggered by a physically or emotionally stressful event.
It affects around seven times as many women as men and the condition typically develops between the ages of 30 and 50 but can occur in people of any age.
There are some unusual triggers known to cause a flare-up in Zoe's symptoms such as the weather but more commonly it’s stress.
She said: “A lot of people when they get the diagnosis think ‘my life’s over, I can’t do anything’ but no two people have the same symptoms.
“I’m fortunate that I work with some awesome people who know when I’m not right and will help me out.
“I also get fantastic support from my partner, Wayne. He helps me get going when I’m having a bad morning.”
It's not known how many people are affected by fibromyalgia, although research has suggested it could be a relatively common condition.
Some estimates suggest nearly one in 20 people may be affected by fibromyalgia to some degree.
The effects of the condition have meant Zoe has had to reduce the number of hours she works and take anti-inflammatory and pain medication to help manage her symptoms.
She said: “You can get the odd ‘she’s just being lazy’ but anyone who knows me knows that I am anything but lazy so when I need to rest, I need to rest.
“They know I’m not just sitting on my bum in the office because I don’t want to be out there, it’s because I’m literally about to break.
“Depression comes with this condition because people mourn the life they used to have.
“If I had crutches or a leg missing then people would know but when they see a smile on my face they don’t know my pelvis is killing me or my muscles feel as if they’re on fire.
“I think it’s about compassion and understanding, that’s what helps the most.
“The best thing anybody can do for someone that’s been diagnosed with an invisible illness is just to listen to them.”
Fibromyalgia can be a difficult condition to diagnose as there's no specific test for the condition, and the symptoms can be similar to a number of other illnesses.
Support groups can provide an important network for people diagnosed with fibromyalgia where they can talk to others living with the condition.
Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia.
