Every night for the past 15 years, Annette Ritchie has
struggled to fall asleep. She is kept awake by sensations pulsing through her
legs which give her a relentless urge to move them.
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When she lies down or sits still for long, niggling
sensations “like ants crawling in my blood” develop in both limbs.
“I have this irresistible urge to move my legs, as it’s the
only thing that relieves the feelings,” said Annette, 52, a former council
worker who lives in Inverness, the UK with husband Andrew, 57, a security
camera operator.
Because of her broken sleep, she is nearly always exhausted,
which in turn affects her concentration. “I’ve put pans on the stove and let
them boil dry,” she said.
Annette has restless legs syndrome (RLS), defined as an
irresistible, frequent urge to move your legs, usually at night. This is
accompanied by sensations such as tingling, itching, burning, and fizzing, or a
feeling that insects are crawling under the skin.
About 80 percent of those affected also suffer from periodic
limb movement disorder — an urge to repeatedly jerk the arms or legs, again
mainly at night.
The name “restless legs” makes the problem sound trivial
but, in fact, it can disrupt sleep so badly that it leads to chronic insomnia
and all its associated health and emotional problems, including depression, and
relationship breakdown, said Dr Julian Spinks, a general practitioner in Kent,
and chair of the charity Restless Legs Syndrome UK.
A US study published in the journal Neurology in 2019 found
that people with RLS were two to two-and-a-half times more likely to self-harm
or have suicidal thoughts than those without it.
Dr Spinks, who developed RLS himself as a junior doctor,
said: “Although it is estimated to affect more people than type 2 diabetes,
most people don’t know anything about it or think it’s not a serious
condition.”
There is also no definitive test for RLS, so many are
misdiagnosed and given treatments that do nothing to help or even make their
symptoms worse.
Dr Spinks said: “The symptoms can mimic those of other
conditions such as peripheral neuropathy (
nerve damage in the limbs), night
cramps, insomnia, and depression.
“Patients can sometimes be diagnosed with insomnia and
prescribed sleeping tablets. Others are told they have night cramps and
prescribed quinine — but quinine can make RLS worse, though it isn’t known why.
Others are treated for back problems, nerve
pain or nerve entrapment.”
Experts at Seoul National University Hospital in South Korea
earlier this year announced that they had identified biomarkers — unique
proteins in the blood — in RLS sufferers. However, the results, published in
the journal Sleep Medicine, were from only a small group, so any tests could be
some way away.
In the meantime, the condition continues to be underplayed,
even by doctors, says professor Guy Leschziner, a consultant neurologist and
clinical lead at Guy’s and St Thomas’ National Health Service Trust in London.
“The impact on people’s lives is very much underappreciated
— one commentator in a medical journal even called it a condition ‘made up’ by
drug companies to make money,” he said. “It is really under-researched.”
Even the cause is not fully understood. “In some individuals
it may be entirely genetic,” said professor Leschziner. “In others, it may be
largely as a result of medication or iron deficiency.”
Low iron stores cause changes in how a brain chemical,
dopamine, is regulated in the nervous system. One of dopamine’s functions is to
control impulses from the legs to the central nervous system — and levels of it
naturally fall later in the day, which may be why symptoms worsen at night.
Common drugs, including antihistamines and anti-nausea
drugs, that work by blocking dopamine receptors in the brain can cause or
exacerbate RLS.
RLS affects more women than men (hormones are believed to
play a role). It is common in pregnancy and occurs more with age; one theory is
that older people are more likely to be on medication that affects RLS.
“But children can be affected,” added professor Leschziner.
“t is sometimes mistaken for growing pains.”
And while for some people RLS is an intermittent problem, a
minority suffer from severe symptoms — as Annette does.
Moving helps calm the symptoms, said Dr Spinks. “We suspect
it’s like scratching an itch — the sensation provides sensory input and
distracts you from the pain.”
However, patients often feel the urge to move again once
they stop. About 15 percent of RLS sufferers have such severe symptoms they
need medication. Until recently, the gold-standard treatment was dopamine
agonist drugs that boost dopamine levels, such as pramipexole and ropinirole.
But side-effects, including compulsive behaviors and
augmentation — where drugs worsen symptoms — mean some doctors are reluctant to
prescribe them.
Augmentation is reported to affect up to 35 percent of RLS
sufferers taking dopamine agonist drugs. Studies found that this can result in
patients developing more intense and severe symptoms and the sensations can
begin to blight other parts of the body, including the arms, head, and torso.
“It is thought this is caused by dopamine affecting parts of
the brain that relate to other parts of the body,” said Dr Spinks.
Other drug treatments include opioids, such as codeine and
tramadol, for pain relief — but these, too, can cause side-effects.
“Five years ago, I might have started an RLS patient on
medication but now we know more about side-effects, I try lifestyle
interventions first,” said Dr Spinks. “I’ll start by concentrating on
identifying possible causes, such as medication side-effects, then suggest
measures such as avoiding caffeine. … which can make RLS worse, although we
don’t know why.
“Testing for iron deficiency is another, as for some people
iron supplements alone will be enough for their symptoms to go away.”
Annette went back to her general practitioner six years ago
and was prescribed painkillers and dopamine agonist drugs, but with limited
success.
“I’m still having to get up and pace the house every night,
trying not to wake my husband,” she said.
“I just wish RLS was taken seriously and more research was
done to find a cure. It’s a lot more than just having jiggly legs.”
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