Living with fibromyalgia and long covid – “My world has become so much smaller”

Estimated reading time: 7 minutes

The symptoms of long covid have been compared to those of chronic conditions such as fibromyalgia – but what’s it like to live with both?

Freya Papworth loves to sing.

Sometimes when she was experiencing a pain flare up or struggling with fatigue, instead of turning on the TV, she’d sit down at her piano or pick up her ukulele and strum a few chords. It was a form of self-care, which she had grown to rely on, after years of learning living with chronic illness.

Now when she tries to sing along to music, she quickly becomes breathless, gets heart palpitations and feels as though someone is pressing a brick onto her chest.

“I can’t sing because I have no puff in my lungs, that’s the only way I can describe it,” says the 37-year-old.

“I’ll be devastated if it doesn’t get better.”

Freya was diagnosed with fibromyalgia three years ago, but has lived with chronic pain since her teens.

After more than a decade of fighting to get a diagnosis, dozens of prescription drugs and tens of thousands of pounds on alternative therapies such as yoga classes and cannabis, she has learned to manage it, in a way that works for her. 

She has a good job as an IT consultant and even though she is only able to work part time outside of this she is an active women’s rights advocate in a number of voluntary roles. 

READ MORE: Why women in pain are turning to medical cannabis

But in November 2021, a covid test came back with the result she had spent the last two years desperately trying to avoid. 

“Having fibromyalgia and very, very mild asthma, I was worried. I’d seen people with chronic conditions like mine really struggle with long covid, so we’d been really cautious and managed to avoid getting it,” says Freya, who lives with her partner in London.

Freya Papworth was diagnosed with fibromyalgia three years ago.

“I know the exact place I got it, it was at my nan’s funeral because all four of us who shared a car came down with it.”

Freya didn’t realise it was covid at first, as her initial test came back negative.

“I had a horrendous pain flare up about 24 hours before the other symptoms started, so I just assumed it was because I’d overdone it,” she says.

“I had bad sinuses and a wet cough, but it just felt like a severe case of ‘fibro flu’.

“When my boyfriend came down much worse than me, we did another test and it was positive.”

After the initial symptoms cleared up, Freya noticed almost straight away that wearing a mask had become more difficult, and found herself needing to reach for her inhaler more often. 

When she returned to work in January, after the Christmas break, the brain fog hit.

“I basically stared at a wall for two weeks, I couldn’t focus, but again I wrote it off and just assumed I was having a bad week. That turned into two weeks,” she says.

“Then I went for a 20 minute walk up the road to the opticians, while I was on the phone to my sister, and by the time I got there I could barely breathe.

“I felt like that for three or four days and then I started to notice I was getting heart palpitations in the evening and my Apple Watch was telling me my heartbeat was 120 and 130 at rest.”

Freya made an appointment with her asthma nurse, and the doctor told her she had inflamed cartilage in my rib cage, which can happen after you have a virus.

It was a private specialist, who Freya was seeing for something unrelated – and who happened to also be running a long covid clinic – who told her she was displaying the classic symptoms of the condition. 

According to the Office for National Statistics (ONS), an estimated 1.3m people in the UK are currently living with long covid, which is classed as new or persistent symptoms that develop at least eight weeks following an initial Covid-19 infection. 

Common symptoms include shortness of breath, fatigue, worsening chest discomfort, loss of concentration, chronic pain, anxiety and insomnia. Many of which mimic those of long-term illnesses such as fibromyalgia and chronic fatigue syndrome CFS/ME.

But for Freya, there’s a distinct difference between the two.

“I understand that people are experiencing lots of different symptoms and this is only my experience, but for me the brain fog is so much worse,” she says.

“I’ll be chatting and will genuinely forget what I’m saying and what we’re even talking about. With fibromyalgia that only happens on a bad day, when I’m really tired or having a flare up, whereas this is now happening three or four times a day. 

“Fibromyalgia for me has never presented an issue with my breathing and the heart palpitations are definitely worse.”

Freya adds: “I’m having to cancel things again, I already worked part time, but I’ve started delegating an awful lot of my voluntary work and I’ve had to ask people to take meetings for me because I just can’t talk for that long without needing to go and lie down.”

As part of the chronic illness community, Freya campaigns on behalf of those with misdiagnosed and misunderstood conditions. 

She says it’s “bittersweet” that invisible illnesses such as hers are finally getting widespread recognition due to their similarities with long covid.

“I have massive empathy for people that are struggling with this, seeing them prescribed things like graded exercise therapy [which has now been removed from the guidance], but at the same time, seeing the outrage about it does make you think ‘hang on, the chronic illness community has been campaigning for this forever’.”

She’s also noticed a difference in how friends and colleagues respond when she needs to take time to rest.

“If you say I’m struggling with long covid everyone knows what you’re talking about and they believe you. There’s a much bigger understanding in society and that’s really positive, but I do wonder how long the goodwill will last. 

“At what point are people going to be told to just get on with it, when it’s no longer interesting?”

The UK charity Drug Science, has just received approval from the NHS Research Ethics Committee (NHS REC) and Medicines and Healthcare products Regulatory agency (MHRA), to study the effects of cannabis on long covid.

Medical cannabis is already being prescribed to patients living with fibromyalgia, who have failed to respond to conventional medicines, for symptoms such as chronic pain, muscle stiffness, fatigue and problems sleeping.

Freya has used cannabis to manage her fibromyalgia symptoms for years, but only now she’s more financially stable, is accessing a prescription an option for her. The breathing difficulties she’s experiencing have made her more determined to pursue this. 

“Cannabis helped me get off painkillers, it helped me to stabilise my body, so if taking it in an oil or tincture form helps to fix my brain I’m going to try it,” she says.

“It definitely helps me with the stress when I get worked up and frustrated about the brain fog.”

In the meantime she waits for her referral to come through from the covid clinic, and hopes these symptoms won’t stick around for too long.

“I am really worried,” she admits.

“With fibro, it’s my body that is affected more than my brain, so I can manage it by working from home, having a comfortable chair, making sure I do the exercise that I can do and not over doing it. It took me a decade to get to that point, but now even the things I could do, like yoga and singing are hard.”

Becoming short of breath on the other end of the call, Freya adds: “Your world becomes small when you have something like fibromyalgia and this has made it even smaller inside my own home.”

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