A proper night’s sleep is a distant dream for 60-year-old Leigh Humpage. The former social worker is one of an estimated two million people who suffer from restless legs syndrome (RLS), the irresistible desire to move your legs.
‘I have these odd, creepy-crawly sensations; it can feel like my legs are on fire – fizzing and buzzing all the time,’ says Leigh. ‘Sometimes I’ll lie in bed and my legs will jerk and twitch so much it will feel like I’ve had a cattle prod stuck in my spine. I’m lucky if I drop off by 4am, which leaves you feeling chronically fatigued every day.’
Leigh was diagnosed with RLS seven years ago. Symptoms include a frequent urge to move your legs, along with sensations including tingling, itching, burning, fizzing, plus pain and pins and needles or a feeling that insects are crawling under the skin.
It’s estimated that 2.2 million UK people suffer from RLS at some point in their lives. Moving the leg is the only thing that brings relief, albeit temporarily. You’re more likely to develop it in midlife, and symptoms may worsen with age, with around 10% of over-65s affected to some degree.
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GP Dr Julian Spinks, chairman of charity Restless Legs UK, who also suffers from the condition intermittently, says RLS may sound trivial but is much more than just ‘jiggly legs’.
‘You have to understand the impact these sensations have when they can be accompanied by pain, lead to long-term sleep disruption, fatigue and depression,’ he says. ‘It’s rare, but some people with RLS become suicidal.’
Around 80% of RLS sufferers also have periodic limb movement disorder (PLMD) – an uncontrollable urge to jerk limbs, usually the legs, repeatedly, mainly while asleep. PLMD can occur independently of RLS, particularly in older people.
RLS and PLMD are worse at night and affect more women than men. For some, the condition comes and goes, but significant numbers suffer from longer term, more severe symptoms that disrupt sleep and can also affect the arms, torso, and head.
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Little is understood about the causes of RLS. It’s likely there are multiple factors, including groups of genes (although no specific genes have yet been identified); low iron stores (which can affect how the brain chemical dopamine controls impulses from the legs to the central nervous system); stress; disrupted sleep and advanced chronic kidney disease.
It could also be a side effect of some drugs, including antidepressants, sedating antihistamines, anti-nausea and anti-psychotic drugs.
RLS is also associated with low levels of dopamine, which helps control muscle movements, in an area of the brain called the basal ganglia. Dopamine levels drop later in the day, which is believed to be why symptoms strike predominantly at night. RLS is thought to be more common in older adults because of lower levels of dopamine as we age; older people are also more likely to have conditions that are thought to cause or worsen RLS, like kidney disease, iron deficiency anaemia, Parkinson’s, underactive thyroid or fibromyalgia.
There’s no cure for RLS, but lifestyle changes, such as reducing caffeine and alcohol and stopping smoking, can help, as can some drugs.
‘Ten years ago, we thought drugs called dopamine agonists – including ropinirole and pramipexole originally developed to treat Parkinson’s disease – were the answer, but now we know they may lead to augmentation, where the drugs gradually worsen symptoms,’ says Dr Spinks.
Studies suggest around 35% are affected by augmentation, but the chances of developing augmentation increase by 7% for every year you take the drugs. For this reason, doctors prefer not to prescribe them as a first-line treatment.
‘Walking, stretching, massaging the leg, applying heat and cold, a hot bath and relaxation exercises and mindfulness can be beneficial,’ says Dr Spinks. ‘But drinking tonic water to help is a myth. In fact, quinine [the active ingredient] has been shown to make it worse.’
Other drugs prescribed for RLS include the epilepsy drugs pregabalin and gabapentin, which can be used to treat the pain associated with RLS. Some patients are given mild opioid painkillers, as well as short-term courses of sleeping pills.
Leigh was prescribed pramipexole and ropinirole, but she developed augmentation. She is currently on 24-hour skin patches of rotigotine, which relieve some of her symptoms and deliver a continuous dose, helping to reduce the risk of developing augmentation again. She has also been prescribed gabapentin for pain.
‘I’ve tried everything, including a TENS machine to block nerve signals to the brain, magnesium supplements to relax muscles, deep tissue massage and exercise, as well as CBD oil and weighted blankets, which all had limited effects,’ says Leigh. ‘However, the patches are working well for me. I don’t think there’s a one-size-fits-all cure for RLS as there seem to be many different causes, so it’s trial and error to try to find something that provides relief for you.’