Fibromyalgia affects millions, but diagnosis is difficult and treatment even more complex. Here, NHS pain consultant Dr Deepak Ravindran reveals how finding the right self-care is key.
Almost 28 million people in the UK are thought to live with chronic pain, with fibromyalgia accounting for around 5% of these cases. That means almost three million patients struggle with the condition each day.
Fibromyalgia, which famously affected former Desert Island Discs presenter Kirsty Young for four years and forced her out of her job, causes pain and tenderness in many areas of the body. But unlike conditions such as arthritis, this isn’t because there is a problem with the joints, bones or muscles.
Instead, the syndrome is thought to be triggered by changes in brain chemicals, known as neurotransmitters, which affect the way pain messages are processed. This means the pain signals that would normally indicate an injury occur in the absence of any form of trauma.
Exactly why this happens is not known, however, in my experience, fibromyalgia usually occurs after a trauma like a road traffic accident, after major surgery or an ICU stay, after a difficult virus or illness, bereavement or divorce, or long-term traumatic stress such as being a carer or experiencing trauma in childhood.
Many of those living with fibromyalgia have other symptoms as well as pain, particularly tiredness, headaches or an irritable bladder or bowel.
Pain can occur anywhere in the body, but the neck and back are most commonly affected and it may be made worse by stress, feeling cold or after activity..
Diagnosis and treatment
There is no blood test or scan that can confirm the condition. Instead, diagnosis is usually made by excluding other causes such as an underactive thyroid or anaemia.
Traditionally, treatment is aimed at reducing pain, but ordinary painkillers such as paracetamol, codeine or ibuprofen are not advised as they do not help..
Drugs known as pain-modulating agents, such as amitriptyline or pregabalin, which work on the way the brain processes pain messages, can be useful. For some patients there may be a role for interventions such as injections or nerve blocks to deal with the pain.
However, it is important to remember that these medications and interventions are still a short-term strategy for breaking a pain flare-up, rather than a cure. Twenty years as a NHS pain consultant has taught me that doctors – and patients – need to take a more integrated approach to pain, empowering those living with fibromyalgia to do more to look after themselves through a toolkit of daily self-management strategies.
Current research indicates that fibromyalgia symptoms are due to nervous and immune system sensitisation, so those living with fibromyalgia should aim to reduce this in order to lower pain intensity. This, I believe, can be done through a variety of self-help techniques including optimising sleep, staying active, reducing stress and eating an anti-inflammatory diet..
Sleep easier: In fibromyalgia, often the phase of deep sleep is impacted but it is during this phase of sleep that our brain performs its housekeeping functions. If these are interfered with for prolonged periods, it can result in sensitisation and worsening of the pain.
Exposure to daylight for 20 minutes first thing in the morning, cutting out caffeine after 3pm, reducing alcohol intake late at night, and adopting a calming sleep routine are all sleep hygiene tips useful in improving sleep duration and quality. Apps such as Sleepio offer a cognitive behavioural therapy (CBT) approach to insomnia. There is also good evidence that CBT can help ease pain symptoms, so it can help more generally too. Your GP should be able to arrange these.
Get going: For a long time chronic pain patients were advised to rest to prevent flare-ups. Now guidelines promote exercise, as losing excess weight and keeping active can have huge benefits for the mind and body, thus helping pain control.
Start slowly, perhaps with just a short walk. Any movement-based activity that you have done in the past which you have found safe and easy to do makes a great starting point. Aim to very slowly increase, week on week, the amount that you do.
If you feel anxious about starting a new exercise programme, speak to your GP for advice on how to create a routine. A typical goal to aim for is to exercise four to five times a week, for at least 20 to 30 minutes each time, but it may take several months to get to this.
Breathe easy: Therapies of the mind and body are very commonly used by fibromyalgia patients and specialists like myself often recommend them. There is evidence that a number of therapies like Pilates and yoga can make a difference.
There are now good YouTube channels that offer access to these therapies and even physio-assisted advice free of cost.
We know that touch can be a powerful way to relax the nervous system and this is possibly one reason why massage can make a difference to this chronic condition.
When you are in pain, it’s easy to slip into shallow, fast breathing. Breathing exercises, meditation and mindfulness-based strategies are extremely popular relaxation techniques which help to calm the nervous system, support relaxation and manage pain.
Eat to beat pain: One powerful way of calming the immune system is by making some positive improvements to what you eat. In fact, research has found that an anti-inflammatory diet can be more effective than drugs at calming neuroinflammation – inflammation in the immune system of the brain and spinal cord.
Replacing white bread and pasta and ultra-processed meals with a wholefood, predominantly plant-based diet can reduce the sensitisation of the nervous system..