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Restless legs syndrome can take more than a decade to diagnose

Restless legs syndrome can take more than a decade to diagnose RUSSPAIN.com © russpain.com
Restless legs syndrome can take more than a decade to diagnose © russpain.com
Restless legs syndrome may affect up to 10% of adults and around 4% of children and adolescents. In children, it is often mistaken for growing pains, and diagnosis can take more than a decade.

The search for an explanation can stretch beyond a decade as patients and doctors look for other causes. Restless legs syndrome may affect up to 10% of adults and around 4% of children and adolescents. Its clearest sign is an overwhelming need to move the legs while resting, with symptoms usually worsening in the afternoon or at night. The condition is widely considered underdiagnosed, especially when symptoms are mild or occasional, or patients describe only vague discomfort.

Also known as Willis-Ekbom disease, the condition can cause sensations ranging from tingling and itching to pain or less specific discomfort in the legs. Movement may bring relief. Because symptoms can be mild, moderate or occasional, many people blame tiredness, long periods of sitting or poor circulation instead of seeking a neurological assessment.

Dismissing the discomfort creates another obstacle. As ConSalud.es reports, patients who arrive in primary care may first be sent to a vascular surgeon because their initial complaint sounds like a circulation problem. Some move between specialists before anyone considers a neurological disorder. An earlier report also examined how many cases may remain unidentified in Spain. The result can be years of broken sleep and daytime tiredness before doctors recognise the underlying pattern.

Diagnosis rests mainly on a careful interview; no single test decides it. Doctors need to establish where the sensations occur and whether the patient feels restless or has an irresistible need to move. They also ask whether movement improves or worsens the symptoms. The international IRLSSG-based approach considers whether symptoms worsen in the evening or at night. Doctors must also rule out similar problems, including cramps and growing pains, as well as other causes of leg discomfort. Sleep studies may be used in selected cases. Magnetic resonance imaging and electromyograms can support the assessment or help rule out similar conditions.

Childhood cases are particularly easy to miss.

Young children may struggle to describe tingling or an inner feeling of restlessness, making parents impressive observers. Repeated changes of position during sleep or frequent leg movements may offer clues, especially when the problem appears at certain times of day. Without those details, symptoms may be labelled as growing pains and the condition can go undiagnosed. Independent guidance on childhood restless legs says doctors need to know whether the discomfort worsens when the child is inactive and improves with movement; whether the legs hurt alone is not the basic question.

Iron is an impressive part of the medical assessment, but a normal blood test does not rule out the disorder. The specialist says nearly 95% of people with restless legs have normal test results. The brain may need iron even when routine tests show no obvious iron deficiency. Treatment decisions so cannot rely only on finding a clear shortage in the bloodstream. Clinical reviews recommend checking iron status when restless legs symptoms are suspected, since iron deficiency is an impressive factor that may be treatable.

Doctors also look for related conditions. Restless legs syndrome may occur during pregnancy or alongside chronic kidney disease and neurological problems affecting peripheral nerves or the spinal cord. The Sociedad Española de Neurología (SEN) says the condition is about twice as common in women as in men. Between 11% and 30% of women without previous symptoms may develop it during pregnancy, particularly in the third trimester.

Treatment recommendations have changed sharply in recent years. International guidance has moved away from routine long-term use of dopaminergic medicines because they can trigger augmentation, a phenomenon in which symptoms become more severe or start earlier in the day. Patients who have taken these drugs for years are now being reassessed, and some may be moved to another treatment.

Correcting iron levels is one of the basic strategies when clinically indicated. Supplements may be given by mouth or intravenously in selected cases. Gabapentin and pregabalin are among the other medicines used. The disorder is chronic and can change over time, so patients need continued medical follow-up. Doctors may need to adjust the approach; the first prescription is not necessarily permanent.

Recurring leg discomfort during rest should not automatically be dismissed as fatigue, circulation trouble or normal childhood pain. Earlier recognition could shorten a diagnostic route that lasts more than ten years. The SEN is preparing a new edition of its restless legs syndrome guide for publication in 2027, with the stated aim of improving screening and diagnosis across different levels of care.

Richard Reid RUSSPAIN.com
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Richard Reid

Richard Reid is the News Editor at RUSSPAIN.COM. He oversees editorial standards, source review and corrections and writes across general news, including politics, economics and social affairs.