The nighttime battle with restless leg syndrome: ‘it almost takes my whole body’

There seems to be no discernable pattern as to why 47-year-old Christina Leon is kept awake until early hours with uncontrollable shock-like sensations “shooting up my legs” on some nights and not others.

Through late night Google sessions trying to find out what was happening, Leon believes she is suffering from restless leg syndrome (RLS)– which is defined as an uncontrollable urge to move the legs.

Leon first had symptoms about two months ago and describes the experience as “bizarre”. It started in both her legs but has recently been presenting in one leg at a time. Some nights there will be no symptoms, but on others she is kept awake until the early hours of the morning.

“The only way I could get relief was moving my legs. There would be night I’d be up until 1am,” she says.

“It seems to stop around that time, but I don’t know if it’s stopped or [I fall asleep] because I’m so exhausted.”

When she first felt the shock-like feeling, she thought it may be a result of the boots worn while working with horses, but quickly discovered the sensation would continue on days she avoided wearing them.

“It’s a sensation that comes up my shin and past my knee. My leg just shudders, but it almost takes my whole body. I don’t even know how to describe it. It’s almost like a shock.”

Dr Andrew Veale, Clinical Director and CEO of the NZ Respiratory and Sleep Institute, says those who live with RLS often find it hard to describe the pain of the condition.

“It’s a cruelly tingly, cramping feeling deep in the leg – it’s not a superficial thing,” Dr Veale says.

“It’s characteristic feature is that it is relieved by getting up and walking around, or jiggling or moving your legs.”

He says RLS often causes insomnia, difficulty sleeping and makes sitting for long periods of time uncomfortable, and is common in pregnancy, iron deficiency, and some diseases including multiple sclerosis.

5 to 15% of the population will have RLS at some point, Dr Veale says, however the condition is “only troublesome in 2 to 3% of people.”

Symptoms of the milder form of RSL can last for a few days to a few weeks and doesn’t require any treatment, but for that 2%, it’s “a very troublesome every day phenomenon”.

“Most people can be appropriately managed in primary care, but sometimes, when people don’t know what this is, they need reassurance,” Dr Veale says.

“Sometimes a GP will mistake this as nerve damage to the legs, but people can get good advice from a neurologist or sleep specialist.”

Dr Veale says there is also a range of pharmacuetical drugs that can be prescribed to those with RLS who are struggling with disturbed sleep and pains.

Leon is aware that medication can ease symptoms for some people, but is hoping to avoid that if possible.

“It’s bizarre and it is a very weird feeling. I’m hoping I can manage it … From what I’m seeing from people it’s almost trial and error to find something that relieves it.”

She has also found she’ll get no symptoms when lying in bed watching a film, “but when I close my eyes it happens”.

Desperate for relief, Leon took to social media for tips on curing the syndrome and says she was amazed at “how many people suffer” from the same thing.

She’s tried herbal teas and magnesium, but the onset of symptoms is random enough that she has not yet been able to figure out if anything is helping, or she’s just been lucky with a symptom-free night.

She’s spoken to her doctor briefly and is planning to have blood tests to check for any deficiencies. She also has a history of low iron levels and is at an age where pre-menopausal hormones could be coming into play. She also has a family history of RLS, with her mother having experienced it as well.

And that random nature of symptoms has resulted in Leon almost being fearful of going to sleep.

“It starts to become a mental thing when I hop into bed. Am I going to get it? am I going to get it?”

“If it was happening all the time, if I wasn’t sleeping til 1am every morning, that would be really horrible,” she says.

“I’m hoping I can find some solutions.”