“It’s perfect torture” – Restless legs syndrome, cannabis and sleep

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 Gould has lived with restless legs syndrome for almost three decades

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. 

More than half of Project Twenty21 patients experience poor sleep

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.

Read more: Can CBD help me sleep?

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.”

Read more: How medical cannabis can relieve symptoms of migraine