Pain Chronicles: Two Generations of Fibromyalgia

Pain Chronicles is a monthly(-ish) column from Caroline McDonagh-Darwin about coming to terms with living with a chronic illness. It will include funny stories and brutal honesty, with some thrown-in chats with her mum Shaz, and other friends too, along the way.

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Not long after I graduated from university, I was at my GP looking for an answer for what was causing my pain. It had started five years or so earlier, just in my knees at the time, but it had become increasingly more widespread.

The young GP looked at my history, asked me some questions, and ordered some blood tests, just to be certain. Then he asked me a very simple question: “What do you know about fibromyalgia?”

I’d seen rheumatology in two different hospitals, GPs in two different surgeries, and had six different physiotherapists – every single one of them had listened as far as Diagnosis One in my family history (my mum, specifically): Juvenile Rheumatoid Arthritis (JRA). My blood tests for rheumatoid factor were negative at least three times. I don’t think even one of them listened as far as Diagnosis Two: fibromyalgia.

Thirty years ago, following investigations which had started while she was pregnant with me, my mum, Sharon McDonagh-Delves’s rheumatoid factor test came back elevated; JRA being the diagnosis to explain the pain she’d been experiencing since childhood. More than 10 years and another baby later, in the specialist musculoskeletal hospital that had been the cornerstone of her care – a hospital I will forever call ‘mummy’s hospital’ – another diagnosis was tacked onto her file: fibromyalgia. 

So, fibromyalgia was the second thing I always said in my medical history, but I could see that their interest finished after the one they could do a blood test for.

As I sat looking rather blank, my GP explained. In the simplest terms, it’s a nerve problem – you experience pain more, you also experience pain that isn’t there. Pain is exhausting in general, and also your brain gets too clogged up with all these extra pain signals and deals with everything even less well. Possibly seeing my face falling quite as much as it did, he offered me a drug I could try while I awaited my own appointment at ‘mummy’s hospital’.

Rather than scare myself on the internet, I went to my first port of call: my mum. The doctor had told me a little about fibromyalgia, what did she know? “They told me they’d tested for sensitive tender points and I ticked enough of the boxes,” she said.

Diagnostic criteria requires 11 out of 18 trigger points to be tender and produce pain if pressed, but this was never explained. “I knew arthritis was my joints and there was pain outside my joints as well. Nobody told me what it was or even invited me to ask. I didn’t know what was that and what was arthritis. I didn’t know if it explained anything, if it changed anything.”

One of the things I remember strongly from the time is my parents calling it ‘like arthritis, but in your muscles’ when my brother and I got inquisitive. When I asked, Mum said “I think I came up with that, I needed to try to simplify it.”

I ticked 12 boxes out of 18 on my trigger point check – something I discovered a few months after my appointment at ‘mummy’s hospital’ when reading a copy of the letter to my GP, sneaking my way into a diagnosis.

The vast majority of the knowledge we both have regarding fibromyalgia came from my physiotherapist. She describes it as like an oversensitive smoke alarm – something you do still need if there’s a fire, but not something that’s useful if it goes off every time there’s burnt toast. It’s also louder than it needs to be and goes on for longer than it needs to. 

Your brain receives too much electrical information and it is at a slightly reduced capacity to deal with it, so it sends back out “too much pain”.

That drug my GP had said I could try? Gabapentin (Neurotonin), which was swiftly changed to pregabalin (Lyrica) because of side effects. Usually used for epilepsy, these drugs have some effect on those electrical impulses, at a much deeper level than I could possibly understand. But it does help. Sharon, however, hasn’t been offered either. 

“I don’t know if they interact with other stuff that I’m taking, but nobody has had that conversation with me,” she said, around the time I switched from one to the other. She would later start to take amitriptyline (Elavil) to accompany her existing drug regimen, but not until a few years later. 

Pain is the thing most people associate with fibromyalgia, and I can’t deny it’s often the thing I’m most thinking about at any given time. But that’s not all folks. We have to deal with high levels of fatigue, an occasional (or more than occasional) dullness of mental faculties – known as ‘brain fog’ – and some extraneous sensations that aren’t pain, like random pins and needles.

It’s not uncommon to find me sitting staring into space because I can’t remember the word for something, or one of us will forget the name of someone we see every single day. 

It isn’t something people think of when you tell them you have fibromyalgia, and I often worry people think I’m taking the piss. Mum said: “I was worried I was developing dementia or something. I couldn’t organise my thoughts.”

Most people still don’t know all that much about fibromyalgia. I think the Netflix documentary Gaga: Five Foot Two about the singer’s struggle with the condition has helped, but generally it takes knowing someone with the condition (and listening when they talk about it) to gain a proper understanding. 

People with fibromyalgia can and do qualify for disability benefits, but it isn’t a slam dunk. It’s also one of those variable conditions that get people labelled ‘scroungers’ by people only focusing on good days.”I’ve felt like a fake, like I’m complaining about pain that isn’t there,” said Mum, summing up the mentality succinctly.

What do my mum and I want for the future? Well, she wants education: for the man in the street, for the people in medicine, and for those who are living with the condition who don’t know too much about it. 

And I want to know that someone diagnosed now, nearly a decade after me and nearly two decades after my mum, won’t be blank-faced and overwhelmed in their GPs office after more than five years of unexplained pain; because someone will have done something about it already.