According to the NHS, 1 in 20 people are affected by fibromyalgia, an illness causing chronic pain all over the body. Harriet Wallace speaks to a young student with the condition to see how it impacts on sufferers.
When Charlotte Wilton, a full-time music student from Bolton, was not keeping up with her fellow classmates at primary school, little did she know it would lead to being diagnosed with an incurable, lifelong and chronic illness.
“My Mum and Dad had always made jokes about me sleeping a lot when I was younger, I was pretty much getting home and sleeping straight away,” says Charlotte Wilton, 23, who has suffered from fibromyalgia since she can remember.
Do you know someone who isn't aware of Fibromyalgia? Make them aware with our Fibro quick facts! ⏰ pic.twitter.com/70AkL1ghKt
— Fibromyalgia Action UK (@fmauk) November 20, 2018
Fibromyalgia, also called Fibromyalgia Syndrome, causes pain all over the body, extreme tiredness and muscle stiffness. The disease is incurable, meaning most people will only get worse.
Charlotte adds, “When comparing me to my classmates, it was clear to see that I had nowhere near the energy they had and I would not play outside like they did just simply because I did not have the energy and I was always in so much pain, due to me having fibromyalgia.
“I spent my childhood doing more, less active, activities in the house than a normal child would do – I have read a ridiculous amount of books and even enjoyed doing my homework at times, as it meant I had something to do other than sitting inside on my own, whilst my friends were out playing.”
The condition is actually quite common, despite most people not knowing about it. Well known sufferers of fibromyalgia include, Lady Gaga, who was forced to postpone the last leg of her 2017 European tour because of her fibromyalgia.
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I have always been honest about my physical and mental health struggles. Searching for years to get to the bottom of them. It is complicated and difficult to explain, and we are trying to figure it out. As I get stronger and when I feel ready, I will tell my story in more depth, and plan to take this on strongly so I can not only raise awareness, but expand research for others who suffer as I do, so I can help make a difference. I use the word "suffer" not for pity, or attention, and have been disappointed to see people online suggest that I'm being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn't be further from the truth. I'm a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love the most in the world: performing for my fans. I am looking forward to touring again soon, but I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more. I love you so much.
Lady Gaga has spoken openly about her struggle with the condition in her documentary ‘Gaga: Five Foot Two’ which is available on Netflix. She also refers to her condition in her song ‘Til it happens to you’ which was released in 2015, by saying “Til it happens to you, you don’t know how it feels, how it feels.”
Fibromyalgia Action UK is a charity raising money to help sufferers by supporting them and their families and to also provide medical information to professionals. In addition, they are encouraging the NHS to research more into fibromyalgia, as there is very little research being carried out in the UK.
Raising awareness of fibromyalgia is an important issue for Charlotte, as she feels a lot of people are not aware of the disease. According to Charlotte, it took her nearly 5 years to get a diagnosis of Fibromyalgia as, in some cases, even health professionals were unaware of the disease.
Charlotte’s fibromyalgia is so severe that she cannot live on her own, has to rely on other people and sometimes has to use crutches to get around.
She says: “My little sister, who is 21, helps me to put my socks on sometimes in the mornings as I struggle to do this on my own. I can’t live on my own and I have to rely on my family for a lot of my basic needs like cooking and washing my clothes.”
She has recently moved back in with her parents, in her hometown of Bolton, after taking a year out from university. Charlotte’s fibromyalgia got so severe that she was struggling with the demands of student life at university, as a music student, as the stress of deadlines can make Charlotte’s fibromyalgia worse as stress is a major factor to it flaring up.
Although she does not play an instrument and prefers music writing, Charlotte still struggles with university life.
Charlotte says, “I had to arrange my timetable with staff at the university so I am not in for really long days, as I struggle with the pain and fatigue fibromyalgia causes, and that all my lecturers know about my condition so I have a support plan in place.”
She is trying to manage her fibromyalgia with pain medication from doctors and has to get up at 6am each day to take them.
“I have got used to having to make plans each day to suit my fibromyalgia and I am used to taking my medication four times a day, although I do still find it a hassle every day having to change my plans because of my condition.
“I have to plan each day to make sure that there are not going to be many stairs where I am going that day, or that if I am on my walking sticks or my crutches, then I will have to plan to not walk too far and that places are accessible for me. I have to even think about what I eat because of my stomach being unsettled sometimes due to my medication.”
Fibromyalgia has baffled doctors and health experts for decades, as the condition does not show up on blood tests or scans and symptoms are often similar to other conditions, such as arthritis.
According to the NHS, 400 million people worldwide are affected by fibromyalgia.
Most research into fibromyalgia has been done abroad, with Swedish researchers looking into a theory of that people with the condition has slightly swollen brains when compared to non-sufferers. This idea is still being researched properly in Sweden, but experts are using this concept to think of new ways to decrease the pain that fibromyalgia sufferers face each day.
It was not until September 2016, that fibromyalgia was acknowledged as a ‘long-term condition’ after the government and health professionals were encouraged to realise how serious fibromyalgia is for patients with the condition. This meant that there should be more services put in place for people with the condition to turn to for help, such as the Bury and Bolton ME/CFS Support Group, which Charlotte regularly attends.