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Fibromyalgia

10 tips for living with fibromyalgia

Gabby Robinson, a yoga and pilates instructor, shares her top tips for coping with the condition.

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10 tips for living with fibromyalgia
Gabby recommends yoga and deep breathing to help manage symptoms.

Gabby Robinson, a yoga and pilates instructor living with fibromyalgia, shares her top tips for coping with the condition.

As a mum of twins and with a busy online yoga and pilates business, Gabby Robinson was constantly exhausted. 

But it was more than that, she felt as though her body was giving up on her. 

Three years ago Gabby was diagnosed with the chronic condition, fibromyalgia. 

What is fibromyalgia?

According to the Mayo Clinic, fibromyalgia is a disorder characterised by widespread musculoskeletal pain, accompanied by fatigue, sleep, memory and mood issues. 

Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Fibromyalgia: A banner advert for the medical cannabis clinic

What causes fibromyalgia? 

According to the NHS, ‘the exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body.’

There are many reasons why someone might be diagnosed with fibromyalgia. It can arise after a viral infection, an injury, trauma, PTSD, toxic load, an accident or other high stress event.

Fibromyalgia can be painful, exhausting and terrifying at times. 

10 tips for living with fibromyalgia

Gabby Robinson is a yoga and pilates instructor

Three years on, Gabby still has flare ups but they don’t last as long and she knows it will pass. 

Along the way, she has learned how to monitor and modify her lifestyle, behaviour, workload, nutrition, rest, hydration, stress levels and exercise formats constantly to make sure her body is getting what it needs.

Rest is so important and so is stimulating the mitochondria, the power houses or batteries, of our cells. 

After Gabby was diagnosed, the consultant and doctor prescribed strong drugs such as Amitriptyline and Gabapentin, in order to help the chronic nerve pain, relax her body and reduce the anxiety surrounding how she felt.

But she decided not to take it, favouring a more natural approach.

“I didn’t like the idea of taking pharmaceuticals and relying on them going forwards if this was going to be a long term issue,” said Gabby.

“I found that good quality CBD oil has similar positive effects to the prescribed drugs, with none of the side effects or addictive qualities.  I use the higher strength orange flavour CBD oil from FourFiveCBD to help settle my pain and discomfort and help me sleep better too.”

CBD and fibromyalgia

Many fibromyalgia patients are finding that CBD helps ease some of their symptoms.

In November 2021, research showed women with fibromyalgia are using CBD to help with their symptoms, instead of pain medication.

Participants were given a survey distributed by the National Fibromyalgia Association in April and May 2020. The results revealed that more than a third of the women were current CBD users, 81 per cent of whom said the use had ‘improved their pain.’ A further 76 per cent of users said they were able to substitute CBD for other medications, including opioids, NSAIDS, gabapentin and benzodiazepines.

It is hoped more data will be available soon, with a UK trial exploring the role of cannabinoids in the treatment of fibromyalgia, expected to get underway later this year.

While CBD can help with fibromyalgia, there are also a number of changes to your lifestyle that can help produce positive outcomes and reduce the symptoms.

Gabby’s 10 tips for living with fibromyalgia: 

  • Rest – Getting regular and consistent sleep is important.
  • CBD oil – I use FourFiveCBD, it helps, tastes better than most and you can get a variety of strengths to suit your needs and budget.
  • Massage
  • Deep breathing and/or meditation 10 mins a day
  • Yoga
  • Try to have a positive mindset and think about the good stuff, gratitude and positivity are proven to have an accumulative and healing effect. I also try to use positive wording, I try not to complain or go on about the pain or fatigue.
  • Cognitive Behavioural Therapy – A few sessions of CBT helped me look at my lifestyle and modify my behaviour to a more sustainable model. I also did a course called The Lightening Process, that used a mixture of neuroplasticity and neurolinguistic programming, to get my mind and my brain on board with the healing process.
  • Heat – I use a sauna when possible as heat is good for detoxing the body and stimulating the mitochondria
  • A vibration plate –  I use a vibration plate to stimulate the lymphatic system
  • I use red light therapy to help with pain, inflammation and a multitude of other positive health benefits, including stimulating mitochondria and even collagen production.
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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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Fibromyalgia

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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