Restless legs syndrome is one of the least understood conditions among the medical profession, but cannabis may provide some much needed relief to patients who have suffered years of disrupted sleep and “perfect torture”.
Imagine lying in bed and every hour you are woken by an overwhelming sensation to move your legs. It’s a deeply unpleasant, crawling sensation seeping from your feet, to your calves and up into your thighs.
The only way to stop it is to get up and walk around until it eases. This could take 10 minutes, but it could take hours. It happens every night without fail. You can’t remember the last time you slept for more than two hours at a time.
“It’s perfect torture,” says 61-year-old Julie Gould whose life has been consumed with restless legs syndrome (RLS) for almost three decades.
“It’s like someone prodding you every hour while you try to sleep. But it’s not only that, it’s the feeling inside, it’s so horrible.”
Julie has refractory RLS, which doctors believe to be caused by scarring in her spinal cord as a result of multiple sclerosis (MS), which she was diagnosed with in 1994.
Despite being on strong medication such as oxycontin for five years, nothing has touched the condition which wakes her three to four times a night, leaving her sleep completely disrupted and as a result fuels her MS symptoms.
“It always hits you, the minute you lie or sit down and the only stop the sensation is to move around,” says Julie.
“It has a knock on effect on my MS, but MS is nothing compared to restless legs, it really is torturous.
“I wish doctors would understand how serious it is.”
It’s all in your head
Despite being among the most common neurological conditions in the world and affecting over one million people in the UK alone – at least 100,000 of whom will have it as severely as Julie – RLS is still not taught at medical school.
“Sadly not only do GPs not know about it and they actually mistreat it because they don’t know how to deal with the drugs that are available for it,” explains Julie, who has recently launched her own campaign to raise awareness of the condition among medical professionals.
“It’s been confirmed to me that it isn’t taught at medical school, it isn’t taught during GP training, and doctors really have no idea how to prescribe drugs properly for it.”
She continues: “People have lost their jobs because of it, they can’t travel by plane or car, their lives are severely disrupted, because doctors dismiss it as ‘oh it’s just fidgety legs’, you’re exaggerating. They say it’s all in your head, that it’s psychological.”
More than half of Project Twenty21 patients experience poor sleep
Until Julie joined Project Twenty21, the Drug Science initiative to improve access to medical cannabis for patients and build the UK’s largest body of evidence for its efficacy, the longest she had slept in 28 years undisturbed was around one hour.
Taking cannabis oil gave her three to four hours of deep sleep for the first time.
“I took it at night in the form of drops and it put me into a deep sleep so the RLS didn’t filter through until the effects of the cannabis wore off. It seemed to stay just below the surface so it didn’t wake me up,” she says.
“To get four hours of sleep in a block after 28 years of never getting more than one hour’s sleep has just been fantastic.
“That four hours makes all the difference. It’s transformed my life, just to get sleep is the most precious thing in the world.”
While sleep isn’t one of the primary qualifying conditions for Project Twenty21, data from the study shows poor sleep affects many of the patients enrolled for other conditions.
More than half (56.6 percent) said that their sleep patterns interfere with their daily activities, either quite a lot or significantly, with 31.5 percent reporting insomnia as a secondary condition.
Over a third (36.9 percent) experience severe or very severe problems falling asleep, 36 percent have problems staying asleep and 31.5 percent report difficulties with waking up too early.
Follow up analysis with these patients are expected to examine whether prescribed cannabis helps improve sleep and sleep quality.
The worst pain imaginable
As soon as Project Twenty21 launched last year Julie knew she wanted to be involved. She first tried cannabis to manage the symptoms of her MS 20 years ago, restoring to asking her adult children to access it for her when she had a severe attack.
“With MS you can experience excruciating nerve pain, which is supposed to be the worst pain imaginable,” she says.
“You literally cannot move with it, you have to just sit and go through it, nothing touches it.”
Julie, who was involved in the MS Society’s campaign for NHS access to cannabis-based drug Sativex, continues: “I’ve known cannabis can help MS for a long time.
“If I ever had an attack I would source illegal cannabis through my children, because it was the only thing that relieved that pain. The doctors weren’t giving me anything for it and I didn’t care if they arrested me.”
She adds: “The one thing I was worried about was the quality of the cannabis you get on the street, but at the time I would have taken anything to deal with the pain.”
Symptom-free for the first time in 10 years
While researching RLS Julie came across studies in the US which showed buprenorphine, a drug similar to methadone and commonly used in those struggling with heroin addiction, was having positive results at a low dose in patients with the condition.
While most doctors are reluctant to prescribe it, Julie’s GP was open to the idea.
She has now found a combination of buprenorphine and medical cannabis – which helps manage the common side effects such as nausea – has got her condition under control for the first time.
“For the first time in 10 years, I had no RLS symptoms day or night, but I was waking up with extreme nausea,” she says.
“Then I had a brainwave: people use cannabis for nausea. I can now take the drug that stops the RLS and the cannabis oil has so far completely stopped the extreme nausea. I’m ecstatic, I’m hoping that this will be miraculous for me.”
Following her success, Julie is now keen to raise awareness of Project Twenty21 among other RLS patients.
“I know the doctors at Project Twenty21 are now familiar with the fact that RLS is a neurological condition and cannabis can certainly help with sleep and for a lot of people it can actually reduce the sensations,” she says.
“Every time I go on my forum I say if you’re having problems with your RLS or with sleep, consider this.”
Julie adds: “I have no problem with the stigma attached to drugs. I literally don’t care if someone thinks I’m on opioids or cannabis, I’m just a believer in being open, if something helps then let’s talk about it.”
Medical cannabis may reduce pain levels in fibromyalgia patients – study
The study also showed potential positive results for patients with rheumatoid arthritis and diabetic neuropathy
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 revealed patients experienced reduced levels of pain and better sleep quality following their use of medical cannabis products.
The study surveyed 319 patients about their use of medical cannabis products. Those with fibromyalgia accounting for 82 percent of the group, reported a mean pain level reduction of 77 percent. They also reported sleep quality improvement of 78 percent.
The researchers noted the demographic and clinical parameters before documenting the type of cannabis consumed, the method of consumption and the amount.
Other pain conditions enrolled in the study included rheumatoid arthritis patients and those experiencing diabetic neuropathy. The group included 14 with mechanical back pain, eight with physical injuries, seven with rheumatoid arthritis, and seven with diabetic neuropathy. All groups recorded potentially significant levels of improvement in their symptoms.
Pain level reduction
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.
The data was published in the journal Pain Research and Management.
The authors wrote: “Medical cannabis (MC) has a favourable effect on pain level and sleep quality among nearly the entire spectrum of resistant ‘chronic pain syndromes’ seen or referred to rheumatology clinics, including inflammatory diseases resistant to biological treatment.”
“Cannabis should be seriously considered in every ‘chronic pain condition’ whenever the accepted modalities of treatment are insufficient for alleviating patient’s pain and sleep problems.”
CBD and sleep: could choosing different terpenes help with good night’s rest?
Terpenes such as linalool, pinene and myrcene are thought to help with sleep issues such as insomnia or poor quality sleep
The terpenes found in cannabis are thought to help with sleep issues such as insomnia. Did you know that terpenes can also be found in other plants?
Cannabis may help with lengthening sleep time, improving the quality and shortening the time it takes to fall asleep. Combining CBD with different terpenes could help to potentially strengthen its effectiveness such as lavender in the evening for relaxation.
What are terpenes?
Terpenes are the active aromatic molecules found in plants that cause smell and taste. Most people associate them with cannabis plants as they are high in concentration but there are other plants or fruits such as pine, lavender and lemon. In nature, these terpenes protect the plants from animal grazing or infectious germs. Some terpenes play a protective role in helping the plant to recover from damage. Others can act as an immune system to keep away infectious diseases.
There are thousands of different terpenes in existence with different potential benefits such as reducing inflammation, lowering anxiety, increasing feelings of calm or relaxation. One benefit is their ability to potentially improve our sleep patterns and make it easier to fall asleep. Individual terpenes have different effects such as sedation and stimulation.
Brands use isolated terpenes to create the flavours and scents of many everyday products, such as perfumes, body products, and even cleaning products.
Here are three different terpenes to try for sleep
Linalool is the naturally occurring terpene found in lavender. It may have the same benefits that CBD is associated with. It is thought to help with anxiety, depression and sleep issues. This is why lavender is often associated with sleep. Linalool can also be found in geraniums, roses, chamomile and cannabis. It may also increase adenosine which is a sedating hormone that can help us to fall asleep.
A Japanese study reported that linalool could potentially help to reduce sleep problems in dementia patients. During the study, 19 patients inhaled lavender before trying to fall asleep for 20 days. The patients reported better, longer sleep on the days where they inhaled the lavender than when they did not.
Another study published in Phytomedicine in 2002 examined the anti-inflammatory effect of linalool as well as linalyl acetate. It found that both linalool and linalyl may play a major role in anti-inflammation activity caused by essentials oils containing them.
Pinene is the terpene found in pine. Pinene provides the fresh scent of many different plants, including pine needles, rosemary, and basil. Pinene is also responsible for the ‘Christmas smell.’
A study from 2017 reveals that the amount of pinene in the air of a forest could be therapeutic. Pinene can be a bronchodilator that allows more air into the lungs. It is thought to have an anti-inflammatory effect and may act as an anti-bacterial protecting the body from germs.
When it comes to sleep, another animal study has shown potential for increasing non-REM sleep, reducing the time it takes to fall asleep and lowering anxiety.
The terpene myrcene can be found in hops, lemongrass and thyme. The flowers of the cannabis plant also contain myrcene. Hops and ylang-ylang also contain myrcene and have been associated with sleep.
One study on mice revealed that myrcene could be a powerful antioxidant protecting the brain against oxidative damage following a stroke. Although this study used very high concentrations of myrcene.
Anecdotal evidence suggests that eating a ripe mango before consuming cannabis can boost the psychoactive effects due to the myrcene content of the fruit. This is thought to be because it naturally synergises with THC allowing it to easily bridge the blood-brain barrier.
Can CBD help me sleep?
Could CBD help to improve your quality of sleep or help with conditions such as insomnia?
Getting a good night’s sleep can be really difficult for some especially those experiencing pain or anxiety. We examine if CBD could help you fall asleep faster and stay asleep longer
Poor sleep or insomnia can leave you feeling really ill. Some of the effects of poor sleep can include:
Lack of energy
Reduced attention span.
Increased stress and anxiety
How does CBD work for sleep?
Our endocannabinoid systems manage our body functions such as appetite, mood and sleep. It’s made up of cannabinoid receptors in the brain and central nervous system. The receptors are tiny proteins attached to the cells which receive signals from different stimuli and respond. It is thought that CBD interacts with these receptors in the brain and immune system.
A study from 2019 examined if CBD could improve sleep or reduce anxiety. It involved 72 patients with 47 experiencing anxiety and 25 experiencing poor sleep. The participants were given a capsule containing 25 milligrams of CBD daily. In the first month, 79.2 per cent reported lower anxiety levels and 66.7 per cent reported better sleep.
It is also thought that CBD may also help with chronic pain that can also keep people awake at night.
A review from 2018 studied how effective CBD could be for relief from fibromyalgia, cancer and neuropathic pain. It examined studies from between 1975 to 2018 before concluding that it may be effective without overwhelming side effects.
The best way to take CBD to improve sleep
There is no right or wrong way to take CBD for sleep. Some people may find oils work better than vaping for them but it comes down to the individual’s endocannabinoid system.
The best way to monitor the effect that CBD is having on your system is to keep a record of what, how much and when you take it. Over time, that should give you a clear insight into what works for you. It is also best to start with a lower dose and increase gradually.
Be patient as the study on sleep and CBD mentioned above took a month to show results in patients. CBD builds up over time in our systems meaning the longer you stay on it, the more chance it has of working.
Is medical cannabis better than CBD for sleep?
One of the differences between CBD and medical cannabis is the presence of tetrahydrocannabinol (THC).
CBD is not psychoactive meaning it won’t leave you with the feeling of being high the same way that THC might. It is thought that THC could help to potentially induce sleep by making a person feel drowsy. Some cannabis strains such as Indica may be more calming than others such as Sativa.
Will CBD make me sleepy throughout the day?
CBD may help you to feel better by easing anxiety or stress which may help you to feel more relaxed. Our bodies naturally produce anandamide, often referred to as a mood enhancer, which functions as a neurotransmitter and cannabinoid-receptor binding agent. Anandamide is a fragile molecule that can be broken down easily by the body. CBD is thought to potentially slow the breakdown of this leaving you feeling calmer.
This is not enough to make you feel tired.
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