Fibromyalgia is a chronic illness characterised by a dominant feature of widespread pain that lasts for at least 3 months (Fayaz, 2016). Additional symptoms may vary, but typically include fatigue, non-refreshed sleep, disturbances in mood and cognitive impairments (Macfarlane et al, 2016). As this condition is complex to diagnose, the prevalence of fibromyalgia in the UK is unclear. However, estimates suggest that between 2% (Queiroz, 2013) and 5.4% of the population (Jones et al, 2015) is likely to have fibromyalgia. Diagnosis in the UK is more common among women than men, tends to peak in patients aged between 30 and 59 years and is found among those from the poorest social backgrounds (Collin, 2017). Thus far, the causes of fibromyalgia remain incompletely understood; nevertheless, the pain and suffering experienced by those diagnosed with this condition are very real and debilitating. Patients report that the condition impacts on all aspects of life, including work, social relationships, leisure and optimism about the future (Wuytack and Miller, 2011):
‘I attempted suicide … It's just going to get worse and worse and worse, and living with that feeling and the knowledge that there's nothing I can do that makes it better … the only way I can't be like this is to be dead.’
Since there is no known cure for fibromyalgia, symptoms must be carefully managed to enhance quality of life (Rahman et al, 2014). A variety of pharmacological agents have been recommended to manage the chronic pain symptoms, including but are not limited to anticonvulsants, antidepressants and weak opioids, such as tramadol (Franco et al, 2010). The treatment of fibromyalgia remains a challenging issue for both patients and practitioners, as opioids are frequently prescribed, despite a lack of evidence of their efficacy in this context (Davis et al, 2017). Evidence suggests that patients are likely to require combinations of pharmacotherapies to alleviate symptoms, and it is acknowledged that there is a need to develop new drug treatments for fibromyalgia (Northcott et al, 2017).
The lack of efficacy of pharmacological drugs has meant that discussions around alternative treatments, such as cannabis, have become increasingly relevant (Shah et al, 2017). In some states in the US where medical cannabis has become widely available, patients have turned to this means of managing their pain, reporting a reduction in symptoms, use of medication and side effects (Boehnke et al, 2016). In Britain where medical cannabis is not routinely offered, an estimated 1.4 million people-2.8% of the population-are using illicit cannabis for the symptomatic relief of a medically diagnosed condition (Couch, 2020). This clear potential for cannabis to address symptoms, such as chronic pain, poses challenges for frontline health professionals who are expected to respond to patient need, but are not provided with clear standards for helping their patients to use cannabis safely and effectively (Schlag et al, 2020).
In this uncertain landscape, significant practical challenges are faced by nurses who want to help patients with long-term conditions, but are anxious about ‘doing the wrong thing’. Thus, the Royal College of Nursing (RCN) is taking the lead in medical cannabis reform, supporting an approach that emphasises evidence-based education to facilitate confident conversations with patients (Stephenson, 2019). It has been found that educating community nurses about the lived experience of cannabis use in people living with multiple sclerosis (MS) can help to build trusting relationships with the patient that can eliminate stigma (Daly et al, 2019). Community nurses are required to diminish the suffering of their patients who experience chronic pain, and central to the success of this is an approach that proactively seeks to understand the subjective experience of the patient (Ongston-Tuck, 2012). Therefore, this article aims to inform the practice of community nurses by providing insight into the lived experience of cannabis use in those with chronic pain. From this, suggestions are made regarding how community nurses can best reduce harms and promote the health of patients with fibromyalgia in order to improve their quality of life.
Cannabis use and fibromyalgia pain management
Cannabis is a term that broadly describes products derived from the Cannabis sativa plant that may be used for medical, recreational and industrial purposes (National Academies of Sciences, Engineering and Medicine (NASEM), 2017). There are in excess of 500 components contained within cannabis, but two primary chemicals have been the subjects of scientific investigation because of their effects on the human body: tetrahydrocannabinol (Δ9-THC) and cannabidiol (CBD) (Lafaye, 2017). THC is the psychoactive component of cannabis that provides users with feelings of euphoria and pleasure, while CBD has demonstrated anti-epileptic, anti-inflammatory and pain-relieving properties. Furthermore, the different effects that cannabis has on the body when the THC to CBD composition ratios vary is a subject for further research. Cannabis takes several forms, such as herb, resin or oil, and can be consumed through smoking with tobacco, the use of bongs, edibles and vaping (National Centre for Smoking Cessation and Training (NCSCT), 2020). Table 1 summarises the most common types of cannabis in the UK and explains how they are used.
Table 1. A summary of the most common types of cannabis used in the UK
| Type of cannabis | In a nutshell | Combustible | Non-combustible |
|---|---|---|---|
| Seeded herbal cannabis (dry herb) | Commonly referred to as weed, grass or herb. The dried flower/leaf can be smoked (usually combined with tobacco) or vaporised in a small portable device similar to an e-cigarette, or in larger non-portable vaporisers | Yes | Yes |
| Seedless herbal cannabis (Sinsemilla) | Commonly called skunk. Has been grown in such a way as to increase the THC content. Commonly smoked with tobacco or vaporised | Yes | Yes |
| Resin, hash or solid | Cannabis compounds are extracted from the plant, and formed into a compressed block. Commonly smoked with tobacco | Yes | Yes |
| Concentrates (shatter, wax, butane hash oil) | THC is extracted from the plant using highly efficient processing methods (e.g. butane or carbon dioxide) to increase concentration. The concentrate may resemble wax, or even toffee brittle, and is consumed by heating to a high temperature on a nail or similar heated element and inhaling the vapour—a process known as dabbing. Concentrates are less common in the UK | Yes | Yes |
| Cannabis oil | By using solvents or gases to create a solution which is then heated, oil can be extracted from the cannabis plant. The oil may contain THC, CBD or both; it can be used in edibles or could be added to liquid and used in an e-cigarette | — | Yes |
| Edibles | Cannabis may be mixed in food, such as brownies, or even drink. This is usually resin, although other forms including tinctures may be found | — | Yes |
Synthetic cannabinoids
|
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Cannabis for non-therapeutic use is classified as a class B drug under the Misuse of Drugs Act (1971), whereby penalties for its possession are a maximum of 5 years in prison, a fine or both. Before November 2018, cannabis was classified as a Schedule 1 drug in the UK under the Misuse of Drugs Regulations (2001), which meant that its possession and supply were prohibited without Home Office approval, including for medical purposes. Further to highly publicised pressure from patient groups and lobbying in favour of decriminalising cannabis for medicinal use from the RCN Congress (RCN, 2018), cannabis-based products for medicinal use (CBPMs) were reclassified to Schedule 2, allowing them to be available for research and prescribing (House of Commons Health and Social Care Committee, 2019). CBPMs include any preparations or products intended for medicinal use in humans that contain cannabis, cannabis resin or a cannabinol derivative (Misuse of Drugs (Amendments) (Cannabis and Licence Fees) (England, Wales and Scotland) Regulations, 2018).
At present, there are two CBPMs available for prescription in the UK: Epidyolex-an orally administered CBD treatment for rare forms of epilepsy in children- and Sativex-an oral CBD/THC spray for the treatment of spasticity in MS (Freeman et al, 2019).
Although there is evidence for the effectiveness of cannabis in treating chronic pain and sleeping problems for people with fibromyalgia (NASEM, 2017), the overall evidence base lacks the robustness required for approving the prescribing of CBPM for patients with chronic pain conditions, including fibromyalgia (National Institute for Health and Care Excellence (NICE), 2019). Consequently, NICE has been unable to endorse the prescribing of CBPMs (including CBD) for fibromyalgia, but has recommended that, due to the significant population of chronic pain sufferers in the UK and the severity of symptoms, further research should explore the clinical and cost effectiveness of these treatments. The subsequent difficulties that chronic pain sufferers have experienced in trying to gain access to CBPMs has left many patients left feeling disappointed and let down:
‘We feel like we've been robbed. This is not the medical cannabis that we've been campaigning for. It's a sleight of hand.’
Unfortunately, there is a lack of studies that investigate the efficacy and safety of cannabis in patients with fibromyalgia, and those that do exist do not possess the methodological strengths required to generalise findings (Cameron and Hemmingway, 2020). Nevertheless, there are several smaller-scale, in-depth qualitative studies that explain the lived experience of cannabis use in fibromyalgia and chronic pain sufferers, and it is useful for health professionals to consider these perspectives while the evidence base is being developed further.
Patient perceptions of the benefits of cannabis for pain management
Reduced pain symptoms
While self-report studies are entirely subjective and may not accurately reflect public opinion or the wider evidence base, they can provide a nuanced understanding of the pain experience and insights into fibromyalgia patients' perceived costs and benefits of cannabis use (Piper et al, 2017). Some fibromyalgia patients have reported that their pain manifests in ‘flares’, an increased feeling of unbearable pain intensity that is accompanied by full-body aches and exhaustion (Vincent et al, 2014). One chronic pain sufferer in the US reported that the thing they most liked about medical cannabis was the relief of having a break from the pain:
‘I feel no pain … anyone who hasn't had chronic pain would not even understand how good it feels to even have it gone for a few hours.’
Similarly, an Israeli qualitative study conducted among chronic pain sufferers using medical cannabis found that participants placed a high value on the ‘sigh of relief’ created by the reduction in pain (Lavie-Ajayi and Shvartzman, 2019). Cooke et al (2019) found that, for chronic pain sufferers, pain management is central to daily life, and some patients report that cannabis is the only thing that has offered any kind of reprieve from constant preoccupation.
Increased control over daily functioning
It is important to note that the pain experience for those with fibromyalgia includes both physical and mental distress (Galvez-Sánchez et al, 2019). Furthermore, the sense of helplessness that this condition creates can reduce patients' ability to adapt to the disease. People living with fibromyalgia have described that their condition has left them with a sense of loss of activities, relationships and professional achievements accompanied by feelings of great sadness and disappointment:
‘To me, fibro robbed me of my dreams. Both my pain and my tiredness has an impact on me. It stops me being who I want to be.’
Lev and Goldner (2020) demonstrated that women with fibromyalgia were strongly motivated to exert control over symptoms and achieve personal career goals, particularly as they were often accused of laziness. However, they were often exhausted by the efforts to maintain normalcy, and it was recommended that people with fibromyalgia need support to maintain their careers. A qualitative study that investigated the impact of supervised medical cannabis use in Israel on the cognitive, social and psychological dimensions of chronic pain demonstrated that, despite side effects, cannabis enabled patients to gain a sense of ‘a restored self’, through the increased ability to perform normal daily functions, sleep and focus their mind (Lavie-Ajayi and Shvartzman, 2019).
Reduced use of opioids
Some evidence suggests that medical cannabis can help patients with chronic pain to reduce their use of opioid medication (Boehnke et al, 2016; Centre for Medical Cannabis, 2019). One possible explanation for this concerns the management of the availability of each drug. For example, a qualitative study in the US found that patients with chronic pain perceived that one benefit of using cannabis alongside opioids was that when an opioid prescription could not be obtained, cannabis could be used as a substitution to manage pain (Cooke et al, 2019). Another reason is that cannabis may enhance the ability of opioid drugs to relieve pain, so that a lower opioid dose is required for the same analgesic effect, a phenomenon termed the ‘opioid-sparing effect’ (Nielson et al, 2017). A potential advantage of substituting opioid drugs for cannabis when patients are using illicit drugs to manage pain is that the risk of overdose from cannabis is very small in comparison with the risk of opioid overdose (World Health Organization, 2016). Another reported benefit is that cannabis can help users to be more engaged with their children (Peters, 2013), and ease the unpleasant side effects of opioid medication, which include constipation, nausea and withdrawal (Reiman et al, 2017). Importantly, some patients in this latter study highlighted that pain symptoms varied on a day-to-day basis, so co-use of opioids and cannabis helped them to better manage days when the pain felt more intense.
Patients' concerns around gaining access to treatment
Due to the lack of legitimate access to CBPMs in the UK, people with fibromyalgia are gaining access to them from alternative sources to a medical professional (Stones and Quinn, 2019). There are subsequent concerns that people in pain will be diverted to sourcing illegal cannabis through the black market, be exposed to products that have not been tested and approved and be regarded as criminals for wanting to relieve their pain and suffering (Stevens, 2018). Indeed, several high-profile case studies relating to this have been hotly debated in the mainstream media in the UK. For example, medical cannabis law reform advocate Carly Barton, who suffered a stroke in her twenties that left her with fibromyalgia and constant pain, has publicly challenged the barriers to gaining an NHS prescription for a CBPM (Sky News, 2018; Mahase, 2019). Barton was initially gaining access to cannabis on the black market, but this left her feeling highly vulnerable to arrest or physical attack. Although she was legally prescribed cannabis by a private consultant in April 2019, the costs were high at £2500 for a 3 months' supply. Her substantial campaigning has led to the development of ‘Cancard’, a holographic ID card that will be available from 1 November 2020 for the estimated 1.1 million people who qualify for a private CBPM prescription, but are unable to afford the cost (Cancard, 2020). The card will not legally entitle patients to cannabis, but it provides evidence of a mitigating factor in the Crown Prosecution Service. Further information and application forms are available online at www.cancard.co.uk.
Implications for practice
The use of cannabis with other medication indicates that patients are using cannabis as a personal method of harm reduction (Vigil et al, 2017). A harm reduction approach is one that accepts drug use as an enduring feature of people's lives, prioritises goals based on individuals' needs, maintains dignity and respect for people who use drugs and focuses on reducing harms from drug use, rather than ceasing use (Lenton and Single, 1992). When working with patients with fibromyalgia who use cannabis, community nurses can adopt this approach by being non-judgemental about its use, discussing how its use can be embedded in patients' lives and considering how harms can be reduced. The Cannabis Patient Advocacy and Support Services (CPASS), founded and chaired by former community district nursing sister and Health Minister Ann Keen, is a collaborative organisation that seeks to provide support, advocacy and education to patients and health professionals (CPASS, 2019a). CPASS (2019b) has produced a medical cannabis guidebook for patients that provides practical guidance about how the risks to health can be reduced. These are summarised in Table 2 (with an acknowledgement that patients may be using illicit cannabis). Any regulated health professional who wishes to increase their knowledge and confidence when working with patients using medical cannabis can register with the Sapphire Institute for Medical Cannabis Education and gain access to free e-learning modules: www.sapphirefoundation.co.uk/.
Table 2. How to reduce the risks of cannabis-related harms to health (based on the recommendations in CPASS, 2019b)
| Source of harm | How to reduce the risks |
|---|---|
| Cannabis | If patients choose to use cannabis to manage their pain, they should be aware of the potential health risks:
|
| Route of administration (way into the body) | Inhaling cannabis using a vapouriser (heating it without burning) and ingestion (e.g. oils or baked into food) are less harmful than smoking cannabis with tobacco. The significant health harms from tobacco use can be avoided if the patient changes to another route of administration |
| Dose | ‘Start low, go slow’ – it is advised that patients start with one inhalation and wait 15 minutes before using more, observing how symptoms change throughout. This principle is even more important when cannabis is being ingested, as the effects of cannabis can take 1–3 hours to set in and can last longer than when inhaled |
| Interactions with other drugs | Cannabis can interact with other illicit drugs, alcohol and prescribed medication. Careful consideration should be given to other depressant drugs, such as alcohol and opioids, as when used together the central nervous system will be slowed down even more |
| Contaminated sources | Illicit cannabis is more likely to be contaminated with moulds, pesticides and other substances. This should therefore be gained from as trusted a source as possible |
| Increased risk of accidents |
|
| Legal issues |
|
Conclusion
This article provides insights into the lived experience of pain for people with fibromyalgia, and explains how cannabis use can help to alleviate symptoms and improve quality of life. As CBMPs are not readily available for people with fibromyalgia in the UK, patients are resorting to gaining access to these through alternative sources, including the black market. This complex situation leads to uncertainty for nurses who want to help their patients and reduce harms to health. Nevertheless, understanding patients' lived experiences and adopting a harm-reduction approach can help to reduce stigma and support people with fibromyalgia to establish control over their lives. Further education and training are available online for community nurses who wish to increase their knowledge and confidence when working with patients who use cannabis for the management of pain.
KEY POINTS
- Fibromyalgia is a long-term condition characterised by widespread pain that is complex to diagnose and difficult to treat and manage
- People with fibromyalgia have reported that cannabis and cannabis-based medical products (CBPMs) can be beneficial in managing their pain symptoms, but these are difficult to access
- Research studies that examine the subjective experiences of people with fibromyalgia who use cannabis for pain management can provide community nurses with insight into patients' lives and enhance person-centred working practices
- Through adopting a harm reduction approach that emphasises personal autonomy, community nurses can work with patients to identify practical solutions that reduce the potential harms associated with cannabis use
CPD REFLECTIVE QUESTIONS
- Has a patient with a chronic pain condition raised the issue of cannabis use with you? If so, how did you respond? If not, how would you be likely to respond in the future?
- Have you had any training in regards to the medical use of cannabis? If not, after reading about the issues raised in this article, what training would you consider undertaking?
- How can the information contained in Table 2 be used to inform your practice and reduce harms to the health of your patients?
- How is this article likely to impact your personal and professional values towards the use of medical cannabis for patients with fibromyalgia?