Unless you know someone affected or are a doctor yourself, you’re probably unsure what fibromyalgia syndrome is. The silence around this chronic pain-related condition is deafening, even though it is thought to affect around one in 20 people in the UK. Vague symptoms and difficulty in diagnosing – or even believing in – fibromyalgia causes patients to go through life in constant states of pain or exhaustion, without nearly enough support.
The core issue preventing easy diagnosis of fibromyalgia is that symptoms vary and can be intermittent. There is no specific test for the syndrome as it does not show up in blood tests. Instead, sufferers are given a clinical diagnosis, often from a rheumatologist. The symptoms aren't easy to manage, either. Main symptoms include chronic fatigue, musculoskeletal pain and cognitive issues, known as ‘brain fog’. Sufferers can also face anxiety, headaches and gastrointestinal conditions such as irritable bowel syndrome. This wide variety of symptoms and the lack of awareness about fibromyalgia can mean that people experiencing these symptoms don’t consider they could be connected, preventing them from pushing for a diagnosis.
Dr Deborah Lee of Dr Fox Pharmacy, an online pharmacy managed by GPs working within the NHS, explains that the word ‘fibromyalgia’ refers to "pain in fibrous tissues such as muscles, ligaments, and joints". The syndrome itself is not limited to this pain, however, although it is a major factor. She adds that fibromyalgia sufferers also are likely to have a heightened sensitivity to pain, "meaning a small stimulus results in a relatively larger pain response". This can vary from slight aches to debilitating agony.
Fibromyalgia patient Sian, 22, tells R29 that she once had a flare-up in her wrists which was so intense that she "couldn’t even hold [her] toothbrush because it hurt so much and [her] hands were so weak".
Sian began exhibiting symptoms of fibromyalgia when she was 11 years old. She found that doctors repeatedly dismissed her struggles as 'growing pains' or hypermobility. One doctor even suggested that she needed to lose weight, despite the fact she was running six miles a day. Sian credits her mother for advocating for her, saying: "They refused to send me for an MRI or X-ray until my mom put her foot down and demanded it."
Struggling to get a diagnosis is common among sufferers of fibromyalgia. Linda, 54, had intense back pain and was recommended ibuprofen, which was not enough to manage her symptoms. She was later diagnosed with ulcerous colitis, an inflammatory bowel disease. In 2019, after two stays in hospital due to flare-ups, Linda's body pain increased and she was referred to a rheumatologist. However, it was her own suggestion that brought fibromyalgia into the conversation. "I asked if I could have fibromyalgia and he did some tests and suspected that this was the cause of my chronic pain, and diagnosed me with chronic fatigue," explains Linda.
Dr Lee confirms this fight for diagnosis. "Typically, fibromyalgia sufferers take at least one year to be diagnosed. This is because many of the symptoms are nonspecific. It takes time for the pattern of symptoms to emerge," she explains. Essentially, because there is no specific test, doctors have to rule out many other illnesses, such as lupus or arthritis, before offering a fibromyalgia diagnosis. She adds: "Many in the medical profession still believe [it] is not a real medical condition. They find the patients demanding and the uncertainty of the diagnosis hard."
Life after diagnosis is no easy feat either. On top of the pain management and brain fog, sufferers must still live their lives. Linda explains how she "can be limping with pain [some days] and others not. This pattern can be in one day, so it can be difficult for people to understand your condition."
Sian seconds this. She says she has to deal with multiple people thinking she is lazy or antisocial because some days she appears "fine" but the next day cannot follow through with plans. This is obviously a huge problem when it comes to work. Sian, who has now had to quit her retail job, tells R29 how she "was getting ready to go to work and felt fine until the chronic fatigue hit me like a ton of bricks and I collapsed". When she managed to get to her phone to call in sick, she was told: "We all have days like that, if you don’t come in we’ll review your employment." Sian went into work despite her condition as she feared losing her job. Linda, too, has had to leave work because she struggled to keep up. "I felt like it was only fair," she says sadly.
At 22, the future holds big decisions for Sian. "My partner and I want children one day but we’ve had to take into consideration whether I’ll be well enough." On top of this, she has to take into account the possibility of passing on fibromyalgia to her children. More research needs to be done but studies have shown that first-degree relatives of fibromyalgia sufferers appear more likely to develop symptoms too. "It can be very heavy on your mind thinking about things like this, especially when you’re young, but unfortunately in our case it has to be done," she adds.
As fibromyalgia appears to disproportionately affect women between the ages of 25 and 55, passing it on to children is likely to be a common worry among sufferers. However, even this statistic is hard to unpack. "Ninety percent of fibromyalgia sufferers are women, and it is most common during the reproductive years," says Dr Lee. She explains that this could suggest a hormonal link to the illness but could also show a deep-rooted gender bias within diagnosis of chronic pain conditions. On the other hand, fibromyalgia syndrome may be more common in men than we realise. "It may be that doctors associate [it] with women and don’t consider the diagnosis so often in their male patients," she says.
For those who have been diagnosed, life becomes a case of managing their symptoms. Dr Lee says that while there is no cure, there are many methods of coping including medication, cognitive behavioural therapy and gentle exercise. She suggests people look to Fibromyalgia Action UK for help.
For Sian and Linda, support and understanding from the medical community and beyond would go a long way to easing their struggles. As Sian says: "Chronic invisible illness shouldn’t be anything to be ashamed of. It doesn’t make you weak, it makes you a warrior."