Mary O Loughlin treats her arthritis, fibromyalgia and chronic pain with medical cannabis. She talks to Cannabis Health about living with these conditions, and the access issues facing her in Northern Ireland.
Mary O Loughlin has been diagnosed with many different conditions which contribute to her daily pain levels and ongoing fatigue such as fibromyalgia. Her first diagnosis with spina bifida occulta marked the start of her healthcare journey.
“I was born with a condition called spina bifida occulta which causes my spine to curve,” Mary said.
“Ever since I was a teenager I always remember having a sore back. I was then diagnosed with osteoarthritis.”
Spina bifida occulta happens when a person’s spine doesn’t form correctly in pregnancy. While it doesn’t usually cause any serious health issues, it can have side effects such as back pain, leg weakness and loss of sensation in both legs. It’s one of the more common forms of spinal bifida occurring in one in 10 people.
Mary was also diagnosed with arthritis prompting ongoing treatment which became part of her life. She was forced to find different solutions to avoid further complications or pain.
She explained: “It just became part of our lives and I lived with that for a very long time. I had three caesarian sections because they wouldn’t allow me to go into labour and give birth because of the pressure on my spine. It was just something we always dealt with.”
When Mary reached her 40s, she was diagnosed with fibromyalgia which left her exhausted. The combination of her spinal condition, fibromyalgia and arthritis was further complicated by surgery. She had two cysts removed from the left-hand side of her lower spine and collapsed discs repaired.
“Fibromyalgia causes muscle tiredness which leads to brain fog. If it gets to a certain time – maybe 6pm – then I can’t even speak because my body is so fatigued.”
She added: “Three years ago, I had two discs between my hip and my leg collapsed and I ended up in a wheelchair for a few months with a leg extension. I needed a spinal infusion. The two bones were fused together using metal rods and screws. It was completely successful.”
Fibromyalgia and spinal fusion
Spinal fusion is a surgery to permanently connect two or more vertebrae in your spine to eliminate motion between them. Initially, the operation appeared successful and Mary was able to celebrate being back on her feet. However, she began to lose a lot of weight prompting testing.
“Over the last two years, I started losing weight. They did brain scans, colonoscopies, endoscopies and they even checked my mental health,” she said.
“They sent me for cognitive behaviour therapy (CBT) which I gladly went to as I don’t care if it’s mental or physical health as long as I am alive. My counsellor said I didn’t need CBT, I needed pain relief and support instead.”
Mary began researching alternative therapies desperate to find something that could provide relief from her pain levels. In a Facebook group for fibromyalgia patients, she came across Alan Richardson from Northern Ireland Cannabis Compassion Club who provides medical cannabis oil for patients.
She started taking the CBD he provided for her and describes it as “life-changing”.
“I had been asking my GP for five years to refer me for a prescription. I knew I had no chance of getting an NHS prescription but I kept on saying it because I believed that the cannabis worked,” she said.
“I knew if I took the oil an hour before my grandchildren arrived then it gave me background pain relief, relaxation and a little bit of energy.”
Mary faced a lot of stigma when it came to her cannabis consumption. Her husband didn’t agree with it. Also, no one in her social circle used cannabis. It caused a lot of hurt and pain when her friends initially blamed her weight loss on cannabis addiction.
“I started to really question everything during the summer because I was eating healthily,” said Mary.
“I knew my best friends were looking at me and blaming cannabis. That made me so angry. They Googled it and saw that weight loss is a side effect so they decided I was addicted and cannabis was doing this to me. They walked away and left me.”
Fibromyalgia and weight loss
Although the cannabis appeared to be working, it was unable to stop the weight loss. Mary’s doctors, becoming alarmed, ramped up her testing to determine what was wrong. They began to test her stomach, blood and bowels looking for different forms of cancer.
Eventually, she was diagnosed with a metal allergy from her implant. But this was not news to Mary, as she had always been aware of her allergy to different metals, something that was already recorded on her medical notes.
“I have been careful all my life but there was no test at the time. I don’t even own a bottle of perfume or body lotion, yet I let them put a lump of metal into my body and didn’t think what it was made of.”
Mary is now facing further surgery in the next few weeks to replace the metal implant with a carbon one that she is not allergic to. There is no option to just remove the implant as the bones would be unable to support the weight.
Going without cannabis is not an option for Mary. Her pain is highly aggravated by everyday events such as taking a bath and her weight loss contributes to the nerve pain she feels.
“I’m only six stone so my nerves are now raw. My whole body is agitated, it feels like it is being slowly poisoned.”
Thanks to a legal prescription Mary has been able to come off her prescription painkillers, but she is still facing issues when it comes to accessing her medication.
Her prescription can get delayed reaching Northern Ireland and the product she has been using is often out of stock. This means that even when she finds something that works, she is often forced to try something new and it may not reach her in time, leaving her without medication.
“It’s a minefield. I don’t think I have had three months in a row where I have the same prescription without a stock issue,” she said.
“You may get a call three days after your consultant writes your prescription to say it’s booked but the product is out of stock or there might be a five to seven day lead time. You are left to go back to your consultant and get another prescription. The easiest thing to do is to pay another £45 to see them.”
Mary highlighted that this is a reason a lot of patients are leaving clinics, but she feels “trapped” as she does not have an alternative and does not want to return to the black market.
“Not having to use morphine is amazing. I’ve come off 50omg a day, along with 12 different medications over two and a half years. If I had to go back out to look for street cannabis again, I wouldn’t know where to go,” she said.
Despite feeling nervous about the upcoming surgery, Mary feels she finally has some clarity thanks to her medication being plant-based and not an opioid prescription.
“My anaesthetist who did the surgery inspired me to stop taking [prescription] tablets,” she said.
“Doctors can tend to disagree with cannabis medicines but he was very open-minded about it. When someone like that gives me good strength to start the journey then I just thought I’m going to keep going. My head is clear even though I’m really sick. My head is clearer now than it has been in 30 years.”
CBD for fibromyalgia pain – where to start?
Studies are indicating that CBD could be a helpful tool in managing symptoms of fibromyalgia.
Increasing numbers of studies indicate that CBD could be a helpful tool in managing some of the symptoms of fibromyalgia, but knowing where to start can be daunting.
Fibromyalgia, a condition characterised by widespread pain, brain fog and sleeping issues, is notoriously difficult to treat.
Over-the-counter and prescription medications are often the first port of call, but these can be accompanied by unwanted side effects that may leave sufferers feeling worse.
Evidence is growing that cannabidiol (CBD) could be the answer to fibromyalgia patients’ prayers, with a number of studies into the effects of CBD showing a clear correlation between its use and a reduction in pain, along with improved sleep.
One such study, published in the Journal of Cannabis Research, clearly pointed to a reduction in pain and other symptoms in patients with fibromyalgia.
An Italian researcher explored the long-term use of various types of cannabis in 38 patients with treatment-resistant fibromyalgia. Participants consumed CBD for up to 12 months, in conjunction with their prescribed medications.
The author reported that “significant improvements were observed” following the initiation of cannabis therapy in most of the patients.
Anecdotally, too, increasing numbers of people are turning to CBD to ease their fibromyalgia symptoms, especially those for whom traditional treatments have failed, or who are uncomfortable being reliant on prescription medication.
A 2020 survey by the National Fibromyalgia Association found that more than a third of women with CPP, the pelvic pain common in fibromyalgia patients, used CBD for pain relief, better sleep and to treat anxiety.
A US study, meanwhile, discovered that more than 70 per cent of fibromyalgia patients were using CBD as an alternative to opioid medications.
How to use CBD for fibromyalgia
Nowadays, there are a variety of different ways to use CBD, from food and drinks to topical remedies, and even pillows, candles and make-up.
However, the most common (and practical) ways to take it to ease fibromyalgia symptoms are through edibles and tinctures.
Edibles are when CBD oil has been used as an ingredient in baked goods, gummies, drinks or chocolates.
They may take longer to take effect, but when they do, the effects tend to last longer, which may make them a popular choice for those suffering chronic pain.
However, some experts urge caution when it comes to taking CBD edibles because dosing can be unreliable.
Tinctures, on the other hand, are made by soaking cannabis flowers in alcohol for an extended period of time. This process extracts the CBD into a more concentrated form than found in most CBD oil products. Tinctures are taken by the drop, and can be used on their own or mixed with food or a drink.
CBD is also available in topical treatments, such as balms or creams, which may be beneficial if the pain is concentrated in a particular location. It can also be found in bathing products, which have the added benefit of relaxing the body ahead of bedtime, hopefully increasing the chances of a good night’s sleep.
Before taking CBD in whatever form, there are some things to be aware of.
Firstly, the advice is always to start low and go slow. This means taking a very small amount infrequently, gradually increasing it until you find what gives you the result you’re hoping for.
Secondly, as with all other natural products, there is the potential for adverse reactions when taken with other medications, especially those that come with grapefruit warnings, such as certain blood thinners. These warnings indicate that certain medications should not be taken with products containing grapefruit.
However, as long as guidance is followed, CBD, with its well-documented anti-inflammatory and calming properties, could be well worth trying to ease a number of debilitating fibromyalgia symptoms in one product.
CBD guides: Could CBD help the symptoms of long covid and fibromyalgia?
A study reported that 30 per cent of patients with Long Covid met the diagnosis criteria for fibromyalgia
The Office for National Statistics reveals that 1.3 million people in the UK are estimated to have Long Covid. We ask if CBD could help the symptoms.
Long Covid is a series of symptoms that persist for weeks after the initial infection. As part of the survey, 325,000 people were asked to record their own symptoms. The results recorded shortness of breath, extreme tiredness and brain fog among others. Fatigue was the most common symptom with 51 per cent of participants stating they were struggling with extreme tiredness.
Similar symptoms have also been noted in patients diagnosed with fibromyalgia.
In a study from late 2021, it was reported that 30 per cent of patients with Long Covid met the diagnosis criteria for fibromyalgia. The survey included responses from 600 patients who had recovered from COVID infection but were now struggling with their symptoms post-infection.
The survey was based on the American College of Rheumatology’s Survey Criteria for Fibromyalgia, as well as its Fibromyalgia Impact Questionnaire. It suggested that inflammation to the lining of the blood vessels or immune system post-infection could be the cause. Interestingly, the survey results revealed that men were more likely than women to develop symptoms in line with fibromyalgia. Fibromyalgia is thought to affect more women than men.
As Long Covid is a relatively new condition, there are not as many studies as there are for fibromyalgia. We ask if CBD could help the overlapping symptoms of both.
Inflammation is a response from the body when it is under extreme stress. Patients with Long Covid experience a cytokine storm which is an extreme inflammatory response. If the body releases too many cytokines into the system, it can lead to acute respiratory distress syndrome (ARDS).
This inflammation can lead to severe pneumonia making breathing difficult. Research has shown that CBD may reduce a number of the inflammatory cytokines associated with Covid such as IL-6 or interleukin (IL)-2.
A pre-Covid study on animals with asthma also showed that CBD could potentially reduce cytokine production making it easier for them to breathe. The same study also revealed that it had an effect on pulmonary fibrosis which is a thickening of the blood vessels and scarring leading to long term breathing complications.
Patients with fibromyalgia may also experience inflammation. Studies show CBD may help to reduce the level of painful inflammation. One study found that CBD may prevent the hypersensitivity of cells in the surrounding nerves for people experiencing chronic pain.
With both conditions, fatigue is reported to be one of the most common symptoms. Fatigue is a response to the body attempting to fight a viral infection such as Covid. In Fibromyalgia, this can range from mild tiredness to severe exhaustion with flu-like symptoms.
CBD may help with sleepiness or reduce anxiety or stress which may interfere with sleep.
A study examined if CBD could help sleep or anxiety. Researchers took 72 participants with anxiety and poor sleep. They were given 25 mg of CBD in a capsule daily. Within the first month, 79.2 per cent reported lower anxiety levels while 66.7 per cent reported better sleep as a result.
A lack of sleep, pain and fatigue can combine to create intense headaches. Migraine headaches can cause sensitivity to light, an upset stomach, loss of appetite and you may even feel sick. Viral infections such as Covid can make existing migraine attacks worse and they may be more frequent or last longer than usual.
Fibromyalgia may cause stiffness in the neck or shoulders which leads to headaches or migraines.
A study from 2016 found that CBD may help with migraine pain relief. The study took place at two medical cannabis clinics in Colorado. The patients used medical cannabis that had a percentage of CBD but also contained THC. The results showed that 48 patients reported that it had helped to reduce the number of headaches they experienced and the frequency. A further 24 patients found that it stopped their headaches.
Depression and anxiety are common with both conditions.
Coping with the long-term effects of a new diagnosis or worrying about what life may be like in the future.
CBD may have a positive interaction with the hormone, serotonin in our brains. Serotonin is involved with a lot of different functions in our bodies but it impacts a person’s happiness and emotional well-being. Low serotonin levels are associated with depression. A review of existing studies showed that CBD may have anti-stress effects that could reduce depression.
Some terpenes are also thought to have potential benefits for patients with Long Covid. Terpenes give plants their smell and taste. Different terpenes can be found in CBD or cannabis strains and are thought to be associated with certain health benefits. Pine needles are a great example of a terpene.
Beta-caryophyllene which can be found in hops, cloves and rosemary also interacts with the CB2 receptors in the body. Due to its interaction with this receptor, it may have anti-inflammatory, antiviral, and immunomodulatory properties.
As a result, it may help with infection, immunity, and inflammation. All of which are experienced by those with Long Covid.
Myrcene is another terpene commonly found in thyme and lemongrass that may be helpful for fibromyalgia. It is a powerful anti-inflammatory and also, may help with sleep issues.
Could medical cannabis help fibromyalgia?
We examine the science surrounding medical cannabis for fibromyalgia
Fibromyalgia can be a debilitating and extremely painful condition. We examine if medical cannabis could offer some help with symptoms.
Fibromyalgia is a condition that causes pain, fatigue brain fog and causes difficulty sleeping. It also causes memory problems and headaches. It is estimated that may be around 1.5 to 2 million people in the UK with the condition. It is thought to affect more women than men.
There is currently no cure for fibromyalgia but some patients have turned to CBD and cannabis for relief from their symptoms.
One study that tested Bediol, which contains both THC and CBD on patients with fibromyalgia reported a 30 per cent decrease in pain in comparison to those who took a placebo. Bediol is a high-THC variety of cannabis.
Chronic pain studies
A review of studies on THC and CBD for pain found that in twenty-eight trials that were mostly linked to multiple sclerosis, revealed it may help chronic pain.
One study reported the effects of cannabis in 56 participants, predominately women, with fibromyalgia. The group were split between those who did and did not use cannabis. After two hours of using cannabis, they reported a decrease in pain or stiffness and felt sleepier. There was also an improvement in mental health scores.
Fibromyalgia and inflammation
A new study on patients diagnosed with fibromyalgia and other inflammatory rheumatic diseases, reports a reduction in pain levels following medical cannabis use. The study surveyed 319 patients about their use of medical cannabis products. Those with fibromyalgia accounting for 82 per cent of the group, reported a mean pain level reduction of 77 per cent. They also reported sleep quality improvement of 78 per cent. According to the results, the THC concentration, duration of consumption, and dose had potentially significant effects on pain reduction. Only the duration of consumption had an independent significant effect on sleep quality improvement.
Whole plant cannabis
A new review suggests that whole-plant cannabis may provide relief or improve different symptoms experienced by fibromyalgia patients. Researchers examined scientific papers specific to either the use of cannabis or synthetic cannabinoids in fibromyalgia patients. They reported that cannabis or cannabinoids may help with various symptoms and are safe for use in treatment.
The research focused on 313 studies that investigated Nabilone, Dronabinol, Bedrocan, Bediol and Bedrolite.
How do I get medical cannabis?
In the UK, medical cannabis must be prescribed by a doctor. There are a number of clinics around the country that offer medical cannabis for fibromyalgia patients.
A person can self-refer themselves for a consultation at a clinic through the websites. Prior to the consultation, a patient will be asked to gather their notes and information from their GP about their condition which outlines their treatment. Clinics can offer in-person appointments or over Zoom. It may depend on distance or COVID-19 restrictions.
Once a person has been assessed by a doctor, their case is usually examined by a multi-disciplinary team who decide if cannabis may be the right option. If it is, the clinic will speak to the patient about the different options available before sending their prescription to a pharmacy.
The pharmacy will then post the cannabis to the patient. Follow-up appointments will be made at different intervals to discuss the effects of cannabis.
How much does medical cannabis cost?
The cost for a prescription will vary on what type of prescription it is and how much is ordered.
Different clinics or pharmacies may have varying prices for oils or flower. There will also be different prices for initial consultations and follow-up appointments. It is worth checking with the clinic how much they charge for all of these before committing to a consultation. Also, some clinics may have access programs in place to help patients on lower incomes.
Medical cannabis is not widely available on the NHS yet.
What is the best way to take medical cannabis?
This varies from person to person depending on a number of factors. Medical cannabis is usually available in flowers that can be vaped, oil that can be taken orally or topicals that are applied to the skin.
Personal preference may mean that a person prefers vaping to oils because of the taste or topicals rather than flower. For some, taking oral oils may be a problem or they dislike the taste. In selecting a product, it is worth noting what you prefer or switching to another method if the original doesn’t suit you.
Your doctor may also be able to advise you on methods and also what strength of product is needed.
How do I know if medical cannabis works for my fibromyalgia?
Keeping a journal can help with making any notes about changes you experience. It is also helpful to keep a record so that you can let your doctor know at a follow-up appointment if you have experienced anything negative.
Your follow-up appointments will usually involve speaking to a doctor about your cannabis journey. It may also include filling in questionnaires about how you feel physically or mentally. These are designed to highlight any changes which may require your medication to be adapted.
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