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

What’s it like to live with long covid on top of an existing condition such as fibromyalgia?

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Living with fibromyalgia and long covid

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.”

Fibromyalgia: A banner advert for the medical cannabis clinic

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.

Living with fibromyalgia and long covid

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.”

Living with fibromyalgia and long covid

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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Fibromyalgia

Cannabis “shows promise” as fibromyalgia treatment, study finds

Anecdotal evidence and a growing body of scientific research indicates that cannabis could be effective in treating fibromyalgia.

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Fibromyalgia cannabis

A literature review of fibromyalgia and cannabis research indicates that CBD and THC could be effective in managing the hard-to-treat condition, but more research is needed.

Fibromyalgia affects millions of people worldwide and increasing numbers of patients are turning to cannabis to manage the condition. People suffering from the condition usually experience a range of symptoms including widespread chronic pain, fatigue, stiffness, poor sleep and cognitive dysfunction, referred to as ‘fibro fog’.

Despite its prevalence, the condition is difficult to treat and often goes misdiagnosed or undiagnosed completely. For the average fibromyalgia patient, diagnosis takes around 2.3 years.

A review of preclinical and clinical research on the effect of cannabinoids on fibromyalgia has found that cannabis and cannabis-based medicines “show promise” therapeutically. This supports a growing amount of anecdotal evidence from fibromyalgia patients who have found respite from their condition thanks to cannabis-based medicines.

Gaps in the literature, however, remain a barrier to cannabis being used as a formal treatment, the study concluded. There is a particular need for further animal models, balanced studies to eliminate sex bias in preclinical research and “better translation” between preclinical and clinical studies.

“Limitations in methodology and lack of longitudinal studies to assess efficacy and tolerability preclude the current recommendation for their use in patients with FM.” the authors wrote in the paper, published in the journal Pharmacology & Therapeutics.

The study indicated that synthetic THC and CBD may have therapeutic benefits, but the authors stressed that oral administration of cannabinoids has its limitations, notably the low bioavailability of CBD and THC oils when ingested.

Based on the reviewed literature, the authors said inhaled cannabis is shown to be the most beneficial for pain, sleep and overall quality of life but a lack of scientific understanding of the long-term effects remains a limitation.

Other factors that prevent the recommendation of cannabis as a treatment include “significant variations in methodological approach, herbal cannabis preparations, treatment duration, small sample sizes and a narrow demographic of patients”.

The paper noted that synthetic cannabinoids may also lack the entourage effect, which suggests that the array of phytocannabinoids and terpenes in the cannabis plant work in conjunction to enhance the therapeutic benefits of CBD and THC.

Another route of administration that could be of benefit to fibromyalgia patients is transdermal skin patches for localised musculoskeletal pain, the authors said.

“This method could avoid first-pass metabolism and offer additional benefits such as reduced frequency of dosing, slow release over a prolonged period to minimise adverse effects, and less abuse potential,” the researchers wrote in the paper’s conclusion.

Based on the available research, the authors of the study stated that it is difficult to draw any “robust conclusions” regarding the use of cannabis in treating fibromyalgia, however promising patient outcomes suggest the potential is there.

“There is an overarching need to conduct more [randomised controlled trials] with increased sample sizes, rigorous dosing regimens and consistency with the inclusion/exclusion criteria, more extensive outcome measures and inclusion of longitudinal studies to assess efficacy and tolerability,” the authors concluded.

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Fibromyalgia diaries: Travelling as a medical cannabis patient

Medical cannabis patient, Julia Davenport, on the challenges of travelling with a prescription.

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South Africa remains one of fibromyalgia patient Julia Davenport's favourite places - but getting there isn't always easy.

While cannabis oil has dramatically improved fibromyalgia patient Julia Davenport’s quality of life, it has brought with it new challenges when it comes to travel, as she explains here.

Chronic pain has a nasty habit of getting in the way of doing the things you love.

My big passion which I share with my husband, and I guess our one extravagance, is jetting off to far flung places.

Over the years, however, fibromyalgia, arthritis and aching joints have conspired to make travelling evermore arduous.

Now in my 70s with various replacement parts, difficult terrain is one of the biggest barriers to exploring new places.

Certainly, my husband’s bucket list destination, the Galapagos Islands, is on my no-fly list. I would have adored to go there at some point, but navigating those volcanic rocks, even with my walking stick, would be a nightmare.

Fibromyalgia: A banner advert for the medical cannabis clinic

Familiar holiday spots closer to home are also becoming increasingly inaccessible. Every year our extended family visits the same Northumberland cottage, which is at the bottom of a steep bank.

In years gone by, I’d be fine to walk down to it through the working farm in which it stands. Now, because my back and shoulders have deteriorated, I have to drive right to the door.

Finding ways to compensate for the things you can no longer do is a constant theme with chronic pain conditions.

Aside from mobility challenges, another restriction on travel with rheumatological conditions can be the weather, and humidity can play havoc with chronic pain. I’d love to go to Central America, for example, but I just couldn’t tolerate the heat and humidity.

Having said that, although hot dry weather is far better than the cold British winter, the difference is not enough to drag me away from my family at Christmas time.

For all my gripes about life on the road, though, traveling remains my great joy, and discovering medical cannabis and CBD has definitely helped; although it’s not all plain sailing.

Travelling with medical cannabis

In November I’m returning to South Africa, a place I’ve visited a few times and which has a special place in my heart.

On previous visits, because we’ve flown via Dubai, I’ve not taken medical cannabis or CBD with me.

There is no way I’d risk taking cannabis with me to the UAE, where people have apparently been arrested and put in jail for having codeine, never mind anything else, despite having a prescription for it.

They have a ridiculously long list of substances that they deem addictive which you can’t have. There are things you can apply for permission to take, but I just wouldn’t trust that I wasn’t going to get arrested.

When we’ve flown long-haul through Dubai in the past, I would tend to take enough medication just for the journey. I have even flushed pain medication down the toilet on a connecting flight to Dubai just to make sure I’m not in possession on arrival.

I’ve then managed to pick up cannabis products quite easily in certain final destinations.

In South Africa there was a shop similar to a Holland and Barrett which sold CBD products legally. They were able to match the equivalent of what I was already taking to their products.

In Japan, it was also relatively easy to buy CBD over the counter, even with the language barrier.

In the past, the ease at which you can buy CBD has definitely influenced my travel choices. There are lots of countries that I’d give a wide berth to because of their approach to medication, which is often underpinned by false views on addiction.

At the same time, with so many countries opening up to CBD, travelling is getting easier and the main challenge is the routing of flights through the Gulf.

Thankfully on my next trip to South Africa we are travelling direct to Cape Town directly so I can rest easy that I won’t end up behind bars.

Guidance for travelling with medical cannabis

Some countries allow medicinal cannabis and some even recreational cannabis. Some allow CBD but others do not.

Guidance from the Medical Cannabis Clinicians Society recommends that patients always contact the embassy to check the legal situation in the country they are visiting before travelling with medical cannabis.

 Some countries require a letter of proof from a clinician, some require a request to be submitted to the embassy requesting to travel, some restrict the amount of medication you are able to travel with, i.e. up to 30 days supply. It is suggested that any guidance is sought and confirmed in writing.

It is advised that travellers keep medication on their person, stored in its original packaging along with a copy of their issued prescription and relevant corresponding paperwork. 

You can get an idea of the country’s stance on cannabis initially by searching for “legality of cannabis” on Wikipedia – but always check with the embassy as well.

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Medical cannabis linked to reduction in fibromyalgia symptoms in UK first

New data from the UK Medical Cannabis Registry has shown significant improvements in symptoms.

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Fibromyalgia
Fibromyalgia affects around three million people in the UK.

Medical cannabis is associated with an improvement in fibromyalgia symptoms and quality of life, according to new UK data. 

In what is thought to be a first for the UK, a new study has assessed the effects seen in fibromyalgia patients after being prescribed medical cannabis.

The study, which included patients being treated at Sapphire Medical Clinics, comprised of 306 patients enrolled in the UK Medical Cannabis Registry.

According to those behind the research, significant reductions in fibromyalgia specific symptoms were observed in patients as early as one month and continued to the end of the six month study period.

The patients also reported improvements in pain severity, anxiety symptoms, sleep quality and overall health-related quality of life.

In addition to showing a reduction in fibromyalgia symptom severity, the research found a 17 per cent reduction in overall opiate use by patients.

The full findings will be presented in full at the forthcoming International Cannabinoid Research Society (ICRS) Symposium, taking place from 25-30 June.

Delving deeper into fibromyalgia

Fibromyalgia affects around three million people in the UK and is often a cause of ‘invisible’ disability.

It affects women more often than men, with a typical onset between 35 and 50 years of age, however it can present earlier.

The chronic condition causes pain in the muscles and tissues such as the tendons and ligaments causing tenderness in the upper chest and back, as well as neck, arms, and legs.

Symptoms commonly experienced include anxiety, debilitating fatigue, chronic pain, sensitivity to light, sound, temperature and touch, as well as cognitive symptoms relating to short term memory or difficulty finding a word – often called ‘fibro fog’. These can be exacerbated by stress, cold weather and physical activity with patients reporting fatigue and extreme tiredness which is not relieved by rest.

Until now, there has been no recognised, formal diagnostic process for health care professionals. This may have caused fibromyalgia patients to become “stuck in the symptom” undergoing extensive medical investigations without an official label – navigating between pain management, rheumatology, and psychology experts.

As a result, many people receive an incorrect diagnosis and only receive the true diagnosis after years of searching for an answer. The Royal College of Physicians, however, has recently released new guidelines to support clinicians in the diagnosis of fibromyalgia syndrome.

Consultant rheumatologist at Sapphire Medical Clinics, Dr Wendy Holden, says: “Seeking an official diagnosis is important for patients and can be incredibly empowering by enabling them to validate their condition. An accurate and early diagnosis is vital to ensure symptoms such as anxiety, sleep, and cognitive function can be managed, mobility can be maintained – to avoid the risk of disability. Sadly though, many patients experience a late diagnosis after years of pain, finding themselves in devastating circumstances, unable to work and facing poverty.”

Patients often experience a long treatment “journey”, trying multiple medications to get on top of a set of complex symptoms. Fibromyalgia sufferers may undergo courses of analgesics, anti-depressants, complicated medical regimes and in some instances pain management programmes.

In addition to being a ‘treatment-resistant‘ condition, people with fibromyalgia often can’t tolerate certain medications as their bodies are more sensitive to their effects. When these first-line therapies fail to provide adequate symptom control, medical cannabis can be considered.

“Finding the right treatment regime for fibromyalgia is a huge problem – and 50 per cent of the patients I see at Sapphire Medical Clinics suffer from the condition,” Dr Holden adds.

“This study is the first of its kind into the outcomes of UK patients prescribed CBMPs for fibromyalgia – and results are very promising. One of the ways we can help patients in the future is to invest in this type of research to better understand the condition and the impact of emerging treatment options. From my experience, the results of the study mirror what I am seeing in patients sat in front of me during their follow up appointments.”

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