Patients with fibromyalgia left in agony due to ‘cruel’ ban on drugs by NHS chiefs to treat the chronic pain condition whose sufferers include Lady Gaga

Sufferers of a chronic pain condition are being left in agony over a ‘cruel’ drug ban by NHS chiefs, campaigners claim.

Fibromyalgia patients – who tolerate pain, muscle stiffness and headaches all over the body – had been given powerful painkillers including pregabalin and tramadol. But recent guidance on the management of chronic pain from the NHS spending watchdog, the National Institute for Health and Care Excellence (NICE), has banned its use.

Patients are also being denied NHS-approved non-drug therapies that are proven to work, including a water-based treatment called hydrotherapy, because local health chiefs do not want to fund it, claims Des Quinn, chairman of Fibromyalgia Action UK.

He claims a change in NHS rules regarding painkillers is a ‘major step backwards in the treatment of fibromyalgia’.

Mr Quinn adds: This reduces the quality of life of ‘patients’. Medicines like tramadol are supported by good scientific evidence, which NICE has not taken into account.’

It is not known what causes fibromyalgia, which affects more than two million people in Britain. The condition usually develops between the ages of 25 and 55 and patients report problems with concentration and digestion in addition to pain.

Some research suggests that it is caused by an infection, an injury, or a period of emotional stress, and there is currently no cure.

Famous patients, including pop star Lady Gaga and Oscar-winning actor Morgan Freeman.

Before 2021, NICE had no specific guidance for fibromyalgia, but told doctors to follow the rules for nerve pain. These recommended that patients should be given painkillers, including those that are now banned.

A report from the European Alliance of Associations for Rheumatology concluded that the evidence was in favor of using medications such as pregabalin and tramadol.

However, the increasing number of Britons becoming addicted to these painkillers – as well as concerns that they were not effective in all patients – led to health chiefs cracking down on prescriptions.

One of Britain’s top fibromyalgia specialists, Dr Deepak Ravindran of the Royal Berkshire Hospital, says banned painkillers are being held at too high a level.

He also adds that there should be a wider range of treatments available because the causes of fibromyalgia are so diverse. Other permitted treatments include exercise plans and cognitive behavioral therapy. Hydrotherapy should also be offered to help improve musculoskeletal symptoms, but patients are finding it increasingly difficult to access a swimming pool due to closures during the Covid-19 pandemic.

Patients also report being unable to receive cognitive behavioral therapy due to long waiting lists, says Prof Gary Macfarlane, clinical chair of epidemiology at the University of Aberdeen. ‘Once patients have had the long road to diagnosis, they can often only continue to manage their symptoms without support from the NHS,’ he adds.

Even if they receive the recommended treatment, Dr Ravindran is critical of the way health bosses are restricting them. He adds: ‘The NHS has always paid for a set of six sessions, but for long-term conditions you need ongoing support. The NHS hasn’t yet discovered how to maintain that.’

Instead of tramadol, pregabalin and sedatives, the NICE guidelines suggest that fibromyalgia patients are routinely offered antidepressants, which research suggests have an additional effect in reducing pain.

Dr. Ravindran explains: ‘These drugs are worth a try, but patients can also have a hard time coming off them – 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 work.

Mel Wright, 41-year-old fibromyalgia sufferer from Penrith, Cumbria, has seen her quality of life collapse since the new guidelines came into effect. Previously, a combination of tramadol and pregabalin allowed her to ‘live a reasonably normal life’.

It is not known what causes fibromyalgia, which affects more than two million people in Britain. The condition usually develops between the ages of 25 and 55 and patients report problems with concentration and digestion in addition to pain. Some research suggests that it is caused by an infection, an injury, or a period of emotional stress, and there is currently no cure

But now she is in such excruciating pain every day that she has had to give up her job as a receptionist. The pain has also forced her to install a stair lift at home and be confined to a mobility scooter outside the home. She was bedridden for months.

Mel was subsequently prescribed the antidepressant fluoxetine, but says that although it helped her depression, it did not relieve her pain.

“I understand that painkillers don’t work for everyone and that they don’t want people to take them long-term if they are addictive,” she says, “but they shouldn’t withhold them from people they’re helping. It makes our lives a misery.”

A spokesperson for NICE said: ‘Fibromyalgia guidelines emphasize the importance of shared decision-making and promoting a collaborative, supportive relationship between patients and healthcare professionals.

‘NICE takes into account the best available evidence and we are committed to making changes where this suggests it is appropriate.’