Sufferers of a chronic pain condition are being left in agony because of a ‘cruel’ prohibition on drugs by NHS chiefs, campaigners have claimed.
Fibromyalgia patients – who endure body-wide pain, muscle stiffness and headaches – had been offered strong painkillers, including pregabalin and tramadol. But recent guidance on the management of chronic pain by the NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), has banned their use.
Patients are also being denied NHS-approved non-drug therapies that are proven to work, including a water-based treatment called hydrotherapy, as local health chiefs won’t fund it, claims Des Quinn, chair of Fibromyalgia Action UK.
He claims that a change in NHS rules regarding painkillers is a ‘major step backwards in the treatment of fibromyalgia’.
Mr Quinn adds: ‘Patients’ quality of life is being reduced as a result. Drugs such as tramadol are backed by good scientific evidence, which NICE failed to consider.’
It is not known what causes fibromyalgia, which affects more than two million people in the UK. The condition tends to develop between the ages of 25 and 55 and, alongside pain, patients report difficulty concentrating and digestive problems.
There is presently no treatment, and some research indicates that it may be brought on by an illness, an accident, or a time of mental stress.
Pop sensation Lady Gaga and Oscar-winning actor Morgan Freeman are two well-known victims.
Before 2021, NICE had no clear guidelines for fibromyalgia, but told doctors to follow the rules for nerve pain. These recommended that patients were offered painkillers, including the now-barred drugs.
A report by the European Alliance of Associations for Rheumatology concluded that the balance of evidence was in favour of the use of medications such as pregabalin and tramadol.
However, increasing numbers of Britons becoming addicted to these painkillers – as well as a concern that they were not effective in all patients – forced health chiefs to crack down on prescriptions.
One of Britain’s top fibromyalgia specialists, Dr Deepak Ravindran of the Royal Berkshire Hospital, says the banned painkillers are being held to too high a standard.
He also adds that a wider range of treatments should be available because the causes of fibromyalgia are so diverse. Other permitted treatments include exercise plans and cognitive behavioural therapy. Hydrotherapy should also be offered to help improve musculoskeletal symptoms, but patients are finding it increasingly difficult to gain access to a pool due to closures during the COVID-19 pandemic.
However, the NHS is failing those who suffer from fibromyalgia, a chronic pain illness. According to a recent study, individuals were administered dangerous medications, underwent needless testing, and waited years for a diagnosis.
Researchers at Aberdeen University said some doctors were even refusing to refer patients and dismissing them as “lazy”.
The senior consultant who conducted the UK-wide research is now calling on the NHS to overhaul its care of fibromyalgia patients.
The Scottish government said it would continue to work closely with the NHS to improve how services are accessed and delivered.
Fibromyalgia causes pain all over the body and can bring on extreme exhaustion, and some estimates suggest one in 20 people may have the illness.
By sharing their own stories, celebrities like singer Lady Gaga and journalist Kirsty Young have brought attention to the problem. There isn’t a treatment.
For those who have it, fibromyalgia is a daily battle.
For most, they start with a daily cocktail of painkillers for chronic full-body pain, fatigue and brain fog, and it’s truly hard to put in a box because it’s different every day. It’s muscular pain that can be dull or throbbing, and it can be really intense as well, like somebody jabbing you with a screwdriver, and it’s burning.
Most people stress about what the remainder of their lives is going to be like.
For most, the mornings are slow because they’re trying to realise how they are feeling at that point – what they’ve got to do in that day, and what they can call off if it is extremely bad.
Some people claim that having fibromyalgia hurts worse than giving birth.
There are days when these people are in so much pain, they don’t move off the sofa, apart from going to the bathroom.
Many are on extremely strong painkillers and medications, including Tramadol, but even that doesn’t stop all the pain – next stop, Morphine.
However, there are many people, including doctors, who doubt Fibromyalgia. All I can say about this is if you don’t believe these people are extremely sick, then I seriously hope you don’t ever have to walk a step in their shoes, because quite frankly, it really is no fun at all.
There is no miracle cure for Fibromyalgia; it’s just all a guessing game, and sometimes it’s easier to vilify an illness that you know nothing about than to agree it actually exists, because then the experts would have to do something about it.
People suffer because of this debilitating illness – there is no cure, they know that, but sometimes it’s just nice to know that somebody is listening instead of dismissing.
THE MONTHLY MOSQUITO 