‘My restless legs were like bees biting under my skin’
For years, Mary Rose struggled to get off to sleep or to stay asleep, because she felt like she was being attacked by insects.
"Imagine having a swarm of bees buzzing inside the skin of your legs, biting you," she says, describing the sensation that overwhelmed her.
"It's really very, very painful."
Now in her 80s, the art historian has a condition called restless legs syndrome (RLS), which tortures her at night.
"It makes you want to scratch your legs and get up and walk about – it was just impossible to lie down and sleep because one's legs were twitching in this uncontrollable way," she explained.
The symptoms were so severe, she didn't want to go to bed at night.
'No sleep at all'
Mary Rose can't remember when the problem began, but the condition went undiagnosed for years.
"People would say 'oh you've got cramp; you must take quinine or sleep with corks in your bed'. And I did all these things."
Of course, they had no effect. She also tried rubbing ointment into her legs to ease the stinging sensation, but that never lasted long enough to let her sleep through the night. Visits to her GP also failed to bring relief.
Eventually, she was referred to the sleep clinic at Guy's and St Thomas's hospitals in London, where she's now being treated by neurologist Dr Guy Leschziner.
"Restless legs syndrome is a common neurological disorder that causes an irresistible urge to move, particularly at night, and is often linked with unpleasant sensations in the legs," Dr Leschziner explains.
"It affects up to one in 20 adults," he continues, "and can cause severe sleep deprivation."
At its worst, Mary Rose was surviving on only a few hours' sleep at night, sometimes even less.
"I have had complete nights without any sleep at all," she says.
"If I was very tired, I'd sleep, then wake for an hour or two and sometimes get up."
RLS is often hereditary but can be caused by other conditions including iron deficiency and pregnancy – and it's usually easy to treat.
For most people, simply avoiding caffeine, alcohol and certain medications can be enough, and gentle exercise – stretching or leg massage can help – but for some, drugs are necessary.
Mary Rose's condition is so severe that medication is the only option, so Dr Leschziner has been using a combination of drugs to try to control the symptoms. And it seems to be working, provided she keeps up the dosage.
"I'm free of restless legs," she exclaims with delight. "And sometimes I get an attack which is just so awful that I find I'm walking about all night. But it's my fault because I've forgotten to take the pills".
Distraction strategies
Even though the treatment is working, Mary Rose is still unable to get a full night's sleep.
"I'm sorry to say, the fact that my legs are more under control has not actually affected my sleep patterns.
"Three o'clock in the morning seems to be a time when I wake anyway."
Dr Leschziner says that's not unusual.
"What you describe is actually very common in people who've had their sleep disrupted for many years, in that sleep is a learnt habit."
The dread of the night ahead and the constant disruption of sleep can persist for many years.
He said sometimes people needed sleep retraining – relearning that bed equals sleep rather than the torture of a difficult night ahead.
Armed with advice, Mary Rose has developed her own strategies to deal with the insomnia resulting from years of sleep disruption, caused by restless legs syndrome.
"By listening to my audio books or to music, my brain is beginning to stop running and so I do then feel ready for sleep.
"But that doesn't necessarily mean I sleep for more than a couple of hours," she said.
"What you're doing essentially is you're distracting yourself," explains Dr Leschziner.
"By thinking about the story or music you're listening to, you're no longer thinking about the process of going to sleep and therefore your brain switches into passive mode and then sleep happens upon you as if by accident."
Find out more
- Listen to the third episode of Mysteries of Sleep – on sleep deprivation – on BBC Radio 4 on Monday 25 December at 21:00
- Or catch up later on the BBC iPlayer
- Search for #mysteriesofsleep on social media
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