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Fibromyalgia diaries: How my cannabis journey began

After decades relying on opioids, in her late 60s, Julia decided there must be a better way.

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Fibromyalgia diaries: How my cannabis journey began
Anti-inflammatory drugs and painkillers had been part of Julia's life since she was 19.

In the first instalment of a new series documenting her journey with medical cannabis, fibromyalgia patient Julia Davenport shares how she finally drew a line under decades of opioid use.  

After spending almost my entire adult life reliant on painkillers, I decided in my late 60s that there must be a better way. 

I’ve had osteoarthritis since being a teenager and suffer from joint problems, with several joints replaced as a consequence. I also live with the chronic pain condition fibromyalgia.

Anti-inflammatory drugs and painkillers have been part of my life since I was 19. Over the years, however, the prescriptions have got stronger to enable me to cope with the pain. 

Fibromyalgia: A banner advert for the medical cannabis clinic

For more than 20 years, I took a daily dose of cocodamol, a combination of codeine and paracetamol. But when a joint was on its way out and needed replacing, I would take tramadol, which is basically one notch down from morphine.

I’ve tried oral morphine too, when two slipped discs in my neck left me with excruciating pain. 

I eventually reached the point where I was having to take more and more painkillers to have the same effect.

I’d been taking these tablets since I was at school, which can’t be good for anyone, and I wanted to somehow stop. 

At the time, I’d heard a bit about medical cannabis on the news and my husband encouraged me to look into it, although I wasn’t at all keen on the idea at first. 

I may have grown up in the hippie era of the 1960s, but had never tried an illicit drug – which was how I viewed cannabis.

I thought about its bad reputation and its association with all manner of illegal things you can buy on the street.

I had real anxiety about swapping one thing – painkillers with all sorts of side effects – for another, a substance which had been illegal for decades. 

After some persuasion, and a lot of Googling, I was interested. But a new anxiety arose the more learned. It seemed there were genuine concerns about quality standards and labelling of products.  

As someone who is quite sensitive to new medications and their possible side-effects (despite being such an experienced recipient of painkillers) I really needed to know that anything I took would contain exactly what it was supposed to. 

I eventually decided to give it a go – with CBD oil capsules, rather than full strength medical cannabis at first. 

But I chose a product which is effectively pharmaceutical-grade in terms of quality standards, from a supplier in the Netherlands, a nation way ahead of the UK in this area.

I went cold turkey and stopped taking all the opiates I’d had in my routine for so long and switched to CBD. Within three months I was stable. 

I now take a daily dose of four 50mg tablets, which I believe is relatively large. My dosage can vary, however, partly because joint and muscle conditions are weather dependent, and the climate can screw with them dreadfully.

When its damp and cold you have to protect yourself as the inflammatory response kicks in and so I may increase my dose.

As well as the CBD, I also now have a medical cannabis prescription, having seen a private consultant who specialises in pain management. 

This may not be the conventional way to do it, but I tend to use this option when I have breakthroughs or flare-ups and the CBD oil isn’t coping. This tends to be at night. It’s almost like my reserve which I have at the ready when needed. 

I’m now four years into my cannabis journey and am very happy to not be taking opiates. 

I’ve not had co-codamol since I discovered cannabis as a treatment option, and have only taken opiates during and immediately after recent surgery on my shoulder.

Starting this journey was, of course, a leap of faith. But isn’t any new treatment or medicine, given their possible side effects? 

Next week’s fibromyalgia diaries story: To vape or not to vape? 

Julia is in her late 60s and formerly worked in the NHS. Her name has been changed to protect her anonymity.

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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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Fibromyalgia diaries: To vape or not to vape?

Medical cannabis oil has been life-changing for Julia, but she’s still struggling to come to terms with vaping.

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Fibromyalgia diaries: To vape or not to vape?

Fibromyalgia patient Julia Davenport says cannabis oil has been life-changing for her, but she’s still struggling to get on board with flower.

My perception of cannabis has changed dramatically in the few years since I started taking it as pain relief. 

As I mentioned in my last entry, I’m from a generation which, despite living through the enlightened age of the 1960s, grew up believing the plant to be bad. 

This created a strong resistance to even trying CBD or medical cannabis when they emerged as possible treatments for pain associated with my fibromyalgia and arthritis. 

I’m over that now, and take CBD daily, with a private medical cannabis prescription to use orally whenever I have a flare-up. 

Fibromyalgia: A banner advert for the medical cannabis clinic

Read more about how Julia discovered medical cannabis

One taboo I’m still struggling to get past, however, is the use of vape. 

Buried in my kitchen drawer is a dry herb vapouriser, alongside the medical cannabis flower prescribed to me by a pain consultant.

With this, I’m armed and ready with what I understand to be the fastest route for medical cannabis to get into the bloodstream.  

But, sadly, although it could have rescued me on several occasions in the year since I bought the device, its box remains sealed.

I’m sure many Cannabis Health readers will be shaking their heads right now. What a travesty that something millions of people with a range of conditions could potentially benefit from is going to waste. 

I do truly feel lucky to have a private prescription at a time when countless others are unable to access medical cannabis through cost, red tape or misinformation.

The problem I have is my huge aversion to smoking. Yes vaping isn’t smoking, but the action of ingesting something that looks like smoke into your lungs just doesn’t feel right. 

While I’ve never smoked in my life, my father was a heavy smoker who suffered from the lung disease, chronic emphysema. My mother also had coronary artery disease, possibly related to smoking. 

For these reasons, I just have a mental block about vaping, despite reading about how effective it can be as a breakthrough remedy.

No doubt many people my age, who grew up with parents who smoked, also feel the same; and perhaps there is some way to go before vape vendors can escape perceived links to smoking.  

Maybe more evidence on the impact of vaping on the lungs will help to change this over time – and I’ll eventually make use of my vapouriser. 

Meanwhile, in putting my fibromyalgia diary together, I began to think about all the ways cannabis has changed my life. I thought I’d share perhaps the most unusual one – going cold turkey on my teddy bear collection. 

With chronic pain conditions, including fibromyalgia, night time can be particularly difficult and insomnia is common. It is a horrible experience to feel utterly drained but be unable to fall asleep, sometimes for days. 

Before discovering CBD and medical cannabis I would often find myself wide awake in the middle of the night. It was at these times that my attention drifted on my iPad to eBay. 

For some reason, possibly nostalgia, my search for distraction amid the pain and boredom took me to the furry world of vintage teddy bears.

Many nights spent bidding for bears in the blue light led to a considerable collection building up. 

Now, my days as an arctophile (yes there is a word for someone who collects or is very fond of teddy bears) are over.

My CBD and medical cannabis regime has significantly cut the number of sleepless nights I experience and, in turn, the volume of new bears taking up space on my shelves.

Next time: Travelling as a medical cannabis patient.

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