- More than two million people in Britain suffer from fibromyalgia.
- There is currently no cure for this disease, and doctors do not know the cause.
Sufferers People with chronic pain are being left in agony due to a “cruel” drug ban imposed by NHS bosses, campaigners claim.
Powerful painkillers, including pregabalin and tramadol, have been offered to fibromyalgia patients suffering from full-body pain, muscle stiffness and headaches. But recent guidance from the National Institute for Health and Care Excellence (NICE) to control NHS spending has banned their use.
Patients are also being denied NHS-approved non-drug treatments that have proven effectiveness, including a water-based treatment called hydrotherapy, because local health chiefs do not fund it, claims Des Quinn, chairman of Fibromyalgia Action UK.
He claims the change to NHS rules on painkillers is a “big step backwards in the treatment of fibromyalgia”.
Mr Quinn adds: As a result, patients’ quality of life is reduced. Medicines such as tramadol are backed by strong scientific evidence, which NICE has not taken into account.”
It is unknown what causes fibromyalgia, which affects more than two million people in the UK. The disease tends to develop between the ages of 25 and 55, and in addition to pain, patients report difficulty concentrating and digestive problems.
Some research suggests that the disease is caused by infection, injury, or a period of emotional stress, and there is currently no cure.
Famous sufferers include pop star Lady Gaga and Oscar-winning actor Morgan Freeman.
Until 2021, NICE did not have specific guidelines for fibromyalgia, but recommended that doctors follow the guidelines for nerve pain. They recommended offering painkillers to patients, including drugs that are now banned.
A report from the European Alliance of Rheumatology Associations concluded that the balance of evidence favors the use of drugs such as pregabalin and tramadol.
But the growing number of Britons addicted to the painkillers, and fears they are not effective for all patients, has led health chiefs to tighten prescriptions.
One of Britain’s leading fibromyalgia experts, Dr Deepak Ravindran of the Royal Berkshire Hospital, says illicit painkillers are held to too high a standard.
He also adds that a wider range of treatments should be available because the causes of fibromyalgia vary widely. Other approved treatments include exercise plans and cognitive behavioral therapy. Hydrotherapy should also be offered to relieve musculoskeletal symptoms, but patients are finding it increasingly difficult to access a pool due to pool closures during the Covid-19 pandemic.
Patients also report being unable to access cognitive behavioral therapy due to long waiting lists, says Professor Gary McFarlane, head of epidemiology at the University of Aberdeen. “Once patients have gone a long way towards diagnosis, they are often left to manage their symptoms without NHS support,” he adds.
Even when they receive recommended treatment, Dr Ravindran is critical of the way health leaders limit them, adding: “The NHS has always paid for a set of six sessions, but with long-term conditions you need ongoing support.” The NHS hasn’t figured out how to support this.”
NICE guidelines suggest that instead of tramadol, pregabalin and sedatives, patients with fibromyalgia should be regularly offered antidepressants, which research shows have an additional effect in reducing pain.
Dr Ravindran explains: “These drugs are worth trying, but they are also difficult for patients to give up – they can cause withdrawal symptoms.”
Doctors in hospital pain clinics may still be willing to prescribe pregabalin and tramadol, he adds, so patients should seek a referral if antidepressants don’t help.
Fibromyalgia sufferer Mel Wright, 41, from Penrith in Cumbria, has seen her quality of life deteriorate since the new guidelines came into force. Previously, the combination of tramadol and pregabalin allowed her to “live a very normal life.”
But now she experiences such excruciating pain every day that she had to quit her job as a secretary. The agony also forced her to install a stair lift at home and use a scooter outside. She was bedridden for several months.
Mel was subsequently prescribed the antidepressant fluoxetine, but says that although it counteracted her depression, it did not relieve her pain.
“I understand that painkillers don’t help everyone, and they don’t want people to take them long term if they’re addictive,” she says, “but they shouldn’t take them away from the people they help.” It makes our life miserable.”
A NICE spokesperson said: “Fibromyalgia guidelines emphasize the importance of shared decision-making and developing collaborative and supportive relationships between patients and healthcare professionals.
“NICE takes into account the best available evidence and we are committed to making changes where appropriate.”