Fibromyalgia: the pain behind Lady Gaga’s poker face

Earlier this month, Lady Gaga announced the cancellation of the upcoming leg of her world tour due to her ongoing battle with fibromyalgia syndrome. Her behind-the-scenes Netflix documentary, Gaga: Five foot Two , charts her journey to Superbowl half-time show stardom, but also offers an intriguing glimpse into the challenges faced by someone living with chronic pain.

So, first to the question many of you may be asking yourselves: what on earth is fibromyalgia? In the simplest terms it is a chronic pain syndrome characterised by tenderness and pain in muscles and deep tissues. However there are many secondary symptoms that go along with this, and the biggest challenge for patients with the condition can be living with severe fatigue, broken sleep, psychological distress and mental lethargy known as ‘fibro-fog’ (although the list of potential symptoms goes on, meaning that each individual patient experience can be quite unique).

In her film, we see Gaga encounter all of these issues and more. She traces her fibromyalgia back to a painful triggering trauma – a broken hip sustained on tour three years earlier. This kind of trigger is a common experience for many patients. Even after seeming to make a good recovery from an initial injury, a fibromyalgia patient’s pain may then develop to affect the whole body, over a period of months or even years. The most popular theory as to why this might be proposes that it could be due to a sensitisation for pain processing in the brain, which may lie dormant or unnoticed until the triggering incident leads to the full-blown syndrome.

Understanding what might cause such sensitisation is the focus of current research, and work to date points to structural and functional brain alterations. There is some evidence for a genetic component as well as support for the influence of environmental factors, particularly psychological trauma during formative years. Lady Gaga, like many patients, has experienced past sexual abuse, and severe emotional trauma in adolescence or young adulthood could impact the development of brain mechanisms that might provide resilience and protect against the development of chronic pain.

Like most chronic pain syndromes, fibromyalgia predominantly affects women. Estimates vary, but usually suggest that at least 5% of women will be affected at some point in their lives. There are around one million sufferers in the U.K and up to 10 million in the U.S. This is roughly equivalent to the prevalence of dementia in the U.K., and its not just a first world problem – we see similar rates across the globe. Current treatments are diverse but outcomes are generally poor. In her documentary we see Gaga utilising a range of alternative therapies, painkilling injections, physiotherapy and a (long) list of medications to fight her pain but, as she herself questions, how do the millions of sufferers with more limited financial resources cope? Research suggests that a combination of medication with psychological approaches and exercise therapy gives the best results in terms of improved quality of life, but many patients never find a program that they are truly happy with. There is no cure, and although sometimes patients spontaneously recover, usually after a period of years, most sufferers will live with chronic pain for many years. For the millions of fibromyalgia patients out there this is a life-changing condition, which leads us back to my first point – why have so many people never even heard of fibromyalgia

Perhaps the answer lies in some uncomfortable details. Although men also suffer, fibromyalgia mainly affects women, whose gender-specific medical needs have typically been marginalised throughout history. It is an invisible illness, lacking a clear physical representation to ‘cue’ the pain to onlookers and elicit the normal empathy response. It is invisible in the doctor’s office too; there is no blood test or scan to quantify the condition in numbers, which can lead to suspicion and doubt. Instead of these physical traits, fibromyalgia is accompanied by a psychological burden for patients to endure. If we look to our shamefully recent past, a women presenting to her physician with no apparent injury, describing severe, ongoing pain and exhibiting psychological symptoms would quickly be diagnosed as hysterical or suffering from psychosomatic pain. It would be naïve to assume that this thinking has evaporated from our society with no residual prejudices remaining. Even today it can take many years of living with fibromyalgia, with multiple trips to the doctor and specialist visits before a diagnosis is given.

But it’s not all doom and gloom. For the first time, millions of fibromyalgia patients have in Gaga a truly global voice who actively wants to bring much needed attention to their plight. Her story will help to raise awareness and tackle ignorance for this invisible illness. Moreover, she provides a strong role model as someone who succeeds despite her suffering, like others before her who transformed their pain into art (Frieda Kahlo also likely suffered from fibromyalgia).

At the start of her film, we see Lady Gaga suffering from a painful episode; her physical agony is clear, and she tells the camera that changes in her psychological wellbeing can trigger these flares in her condition. I consider this to be something of a breakthrough point for discussions around fibromyalgia. The complex interaction between psychological and physical suffering deserves our attention, and we need to acknowledge this is not an admission of guilt or a sign of weakness or malingering. It doesn’t mean that the pain is ‘all in your head’, or any less real or debilitating. It simply means that, even when the pain affects the whole of Gaga’s five foot two frame, the mysterious mass occupying the uppermost 6 inches will always play a pivotal role.

For her fans, I hope she is back soon, but for the millions of patients around the world who now identify with her, I am simply grateful for her honesty. Lady Gaga’s announcement could represent the start of something big as we search for solutions for fibromyalgia, the most prevalent pain condition you’d probably never even heard of.

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