More people in Notts are living with painful ‘invisible’ condition fibromyalgia | 07 January 2020

January 7, 2020

NottinghamshireLive, 7th January 2020, Debora Aru and Phoebe Ram

Its exact cause is unknown and there is no cure

The number of people in Nottinghamshire suffering from fibromyalgia – a condition causing unexplained pain – has soared in recent years, according to new NHS figures.

Fibromyalgia sometimes called fibromyalgia syndrome (FMS) is a long-term condition characterised by widespread muscle aches and pains.

Other symptoms often include fatigue, headaches, extreme sensitivity, cognitive problems known as ‘fibro-fog' and depression.

According to the NHS, the exact cause of fibromyalgia is unknown, but it's thought to be related to changes in the way the brain processes pain messages.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event.

Currently, there’s no cure for the condition and there aren’t any UK national guidelines.

Treatment may include prescriptions of antidepressants and painkillers, as well as talking therapies such as cognitive behavioural therapy (CBT).

Kristina Adams, a 29-year-old author from Hucknall was diagnosed with fibromyalgia in March 2018 and also has chronic fatigue syndrome (CFS).

Kristina is prescribed painkillers and epileptic medication to ease symptoms but finds she can also escape pain through writing.

Dr Charles Shepherd explains the symptoms, diagnosis and potential treatments in this MEA leaflet.

“I think the best painkiller is concentration,” she said.

“Your brain can only process so many signals at a time, and if you're fully in the zone, your brain doesn't have the space to concentrate on pain.

“I still have days where I can't do anything and just have to sleep, but it's about knowing your limits and taking time to do what you love.

“Because the illness is invisible, people can be more dismissive but with quicker and better diagnosis and more research, we can hopefully get closer to changing how the general public feel about it.”

Agata Slaby, 28 of Wollaton, has found changing her mindset and improving her overall wellbeing has helped her tackle the condition.

The Nottingham Trent University worker was diagnosed in February last year with lupus as well as fibromyalgia but has used fitness training as a way to push past it.

She said: “When it's severe you feel like you don't want to do anything but it's just a barrier, making it worse.

“You can either give up and accept it or find the motivation to try.”

Responding to the increase in diagnoses she said: “GPs have more knowledge now and there is more awareness.

“Years ago, kids didn't have ADHD, people thought they were just acting up, but now we know more. It's the same with fibromyalgia.

“It can be put down to stress, being overworked but now there is more information about chronic illness.”

Significant increase in diagnosed cases

In 2018/19 there were more than 5,000 cases where patients in Nottinghamshire were admitted with either a primary or secondary diagnosis of fibromyalgia.

That is compared to just over 2,200 cases from 2014/15.

A ‘primary' diagnosis means fibromyalgia was the main reason the patient had to be admitted for care. 

A ‘secondary' diagnosis means while it wasn’t the cause of the admission, it was noted as a condition which also required treatment. 

Diagnosis for fibromyalgia is difficult as there is no way to test for it.

But the increase in the number of cases being seen could be linked to advances in the understanding of the condition.

Paula Banbury is the clinical lead for Pain Pathway, a specialist service at Primary Integrated Community Services (PICS).

PICS covers CCGs in Nottinghamshire excluding Nottingham city and Bassetlaw.

Ms Banbury said the service currently has 7,500 patients with at least 15% diagnosed with fibromyalgia or widespread pain.

She added: “Pain is very difficult to diagnose as there is no test. Fibromyalgia is a syndrome, so it is really a collection of symptoms.

“10 years ago, people were made told it was psychological, but diagnosis has now been legitimised which means acceptance has grown.

“At PICS we don't just treat pain, we treat the patient which means using more holistic methods.

“Fibromyalgia can often lead to low mood, depression and anxiety because of being in pain all the time, so we work to try and get people back to what they enjoy and give them some quality of life.

“We have wellbeing practitioners who focus on support and activities. Hobbies and distractions are very important.

“Working through the pathway is proven to be successful with reduced GP visits and people returning to meaningful function – they start to do more in their daily lives.”

NHS figures show all finished admission episodes (FAE) for fibromyalgia covering patients from across Nottinghamshire’s NHS Clinical Commissioning Groups (CCG). 

An FAE is a spell of care under a specific consultant. One patient can be responsible for more than one FAE during a year.

NHS Bassetlaw CCG has had the biggest increase of cases in Nottinghamshire from just 70 in 2014/15 to 415 in 2018/19.

FAEs in NHS Newark and Sherwood CCG rose from 235 to 785 while NHS Mansfield and Ashfield CCG went up from 405 to 1,135.

Nationally, the number of diagnoses has more than doubled from just 54,081 to 136,949.

Number of FAEs for fibromyalgia in Nottinghamshire by CCG

CCG 2014-15 2015-16 2016-17 2017-18 2018-19
NHS Bassetlaw CCG 70 165 230 300 415
NHS Newark and Sherwood CCG 235 390 535 635 735
NHS Mansfield and Ashfield CCG 405 545 845 1,080 1,135
NHS Nottingham North and East CCG 370 470 555 805 785
NHS Nottingham West CCG 205 235 270 305 395
NHS Nottingham City CCG 800 930 1,125 1,285 1,460
NHS Rushcliffe CCG 160 185 275 260 285

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!

ME Association Registered Charity Number 801279

Shopping Basket