Not all in your head: Attitudes to fibromyalgia may be changing – thanks to Long Covid

Since 2020, viral diseases and chronic disorders have been thrust under a fresh spotlight.

The onset of Long Covid has led to new attitudes and new approaches to healthcare, especially given it often arises in otherwise healthy young people, and can follow even a mild initial infection. At the root of Long Covid may be an overactive inflammatory response, researchers have recently found, while a team at QIMR Berghofer in Australia are reportedly developing a pill to treat symptoms of the disorder. Other scientists are convinced Metformin, a diabetes drug, can even prevent the illness.

Those of us suffering from disorders with similar symptoms to Long Covid, therefore, may have expected new ground to be broken when it came to our own struggle. There could be more than 170,000 people living with Long Covid in Ireland, while an estimated 90,000 to 180,000 people suffer from fibromyalgia. Despite this number, there are no concrete nationwide or specialist treatments available for fibromyalgia patients, who are often disbelieved.

Fibromyalgia is characterised as neurosensory disorder, though more up-to-date research stresses the autoimmune nature of the pain condition. Widespread musculoskeletal aching, fatigue, cognitive disturbance and psychiatric and somatic symptoms often accompany fibromyalgia, though acquiring a diagnosis when medical tests typically present clear results is incredibly tedious. While long Covid appears to be widely accepted, though similarly a diagnosis is based on health history and the ruling out of other diseases through extensive testing, the attitude towards fibromyalgia remains disheartening due to its invisible nature.

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Speaking to two women who were, like myself, diagnosed in their early 20s, they both suggested that the “seemingly random” nature of the symptoms, as well as their gender, made an impact on how they were treated in the Irish medical system.

Aislinn Kearns was diagnosed with fibromyalgia aged 21 in Dublin. “First, the pain was just in one of my legs, but then it spread. I went on a travelling show of doctors, starting with the GP, specialists, and eventually a top rheumatologist. I was admitted to hospital where the consultant did a process of elimination tests, but I later saw the rheumatologist as an outpatient. Most people at the time said it was all in my mind, one even told me that myself and my mother had mental issues, and I was being ‘enabled’. At one point, I was told I was doing it for attention.

“A GP who was aware of what was going on in other countries eventually clicked it,” she says. “The process of getting treatment took four years. It was totally disheartening. I had no support or help. You hit a dead-end and have to slowly figure out how to deal with it. I’ve definitely noticed a better attitude towards fibromyalgia since Long Covid developed.”

[ Fibromyalgia: Chronic pain syndrome remains a medical mystery ]

Twenty-eight-year-old archaeologist Amy O’Keeffe was diagnosed five years ago after extensive neurological testing. She saw a consultant rheumatologist, who referred her to the rehabilitation programme in Our Lady’s Hospice in Harold’s Cross. It took Lyrica (which is no longer recommended) and SSRI medication to offer relief, plus aqua therapy and physiotherapy.

“It had been a long road getting there,” Amy recalls. “I was suffering for a while. Being a young woman definitely negatively impacted my diagnosis journey. I don’t know how many times I was told to my face that I was ‘too young’ to be experiencing what I was experiencing. There was always that air of assumptions about me making a big deal out of nothing, blowing things out of proportion. Nothing was showing up on any tests, so they assumed I was fine.

“I had sunk so deep into that hole of exhaustion, pain and low mood. It felt like there was no way out with this condition. It was a physiotherapist who told me I wasn’t imagining this. There is a connection between the emotional and the physical state, especially with pain. A traumatic experience can trigger it, but it’s real. It’s not in your head.

“Nobody had validated my experiences in such a way before. I was in such a knot that I didn’t believe in the pain I was feeling. People don’t just pass out in the middle of the day, or have burning pain on their skin, or shooting pains for no reason.”

Patients often recall their doctors pointing towards mental health to deter from their physical pain.

Prof Geraldine McCarthy, consultant rheumatologist at the Mater hospital and clinical professor of medicine at University College Dublin, sheds some light. “The pandemic has negatively impacted all chronic musculoskeletal disorders, because most people were unable to access care services during the lockdowns. For a lot of diseases, including fibromyalgia, it was incredibly hard.

[ HSE to launch survey to measure prevalence of long Covid in community ]

“There’s also the aspect of whether Covid induced fibromyalgia in some cases. Post-Covid syndrome studies have shown a number of subclusters of post-acute symptoms, of which one is fibromyalgia-like. One of the problems is that the disorder is a symptom issue. If you have bad abdominal pain and you’re exhausted, you can still appear well to the naked eye. People don’t understand that.”

The pain regulation condition appears in women far more frequently, a group who experience higher levels of medical gaslighting in terms of chronic and acute pain (especially marginalised groups within that category). Pairing an SSRI with neuropathic pain medication, plus light exercise as often as possible and relaxation therapies such as swimming, acupuncture and massage, offer relief for some – though fibromyalgia has no cure.

“Chronic illness as a concept is very much something that’s swept under the carpet in the public consciousness,” says Amy. “It’s something that people don’t want to engage with, because it’s scary that you can be a healthy person and it’s essentially taken away from you.

“Unfortunately, if there has to be a silver lining, Long Covid will hopefully create a better culture of normalising young people having chronic illness, such as fibromyalgia. People of any age can have horrendous symptoms – there isn’t always an explanation as to why.”

Arthritis Ireland helpline for fibromyalgia patients: 0818 252 846