It usually starts in the evening. You sit down after the dinner things are cleared away and something in your legs begins to object. Not pain exactly, and not quite pins and needles. People reach for odd words: crawling, fizzing, restless, “like something is going on under the skin”. The only thing that settles it is getting up and walking about, which is fine at half eight and considerably less fine at half two in the morning.
That pattern has a name. Restless legs syndrome, also called Willis-Ekbom disease, is a genuine neurological condition, not a nervous habit or a sign that you are not tired enough. It is roughly twice as common in women and becomes more common with age. It is also one of the most commonly missed causes of poor sleep in people over 50, largely because so few of us think to mention it to a GP.
TL;DR
- Restless legs syndrome is a neurological condition: an urge to move the legs, worse at rest and in the evening, eased by movement.
- It becomes more common with age and is twice as common in women. Poor sleep, daytime fatigue and low mood are the real costs.
- Low iron stores are the most important treatable cause. Ask your GP for a serum ferritin test, not just a full blood count.
- Common medicines can trigger it, including sedating antihistamines, some antidepressants and anti-sickness tablets.
- Guidance has changed: the dopamine tablets once used first are now discouraged long term because of augmentation, where symptoms worsen over the years.
- Nocturnal leg cramps and the burning of peripheral neuropathy are different conditions, and the distinction changes the treatment.
How it is actually diagnosed
No blood test or scan confirms restless legs syndrome. It is diagnosed on the story you tell, and specialists look for five features together:
- An urge to move the legs, usually with an uncomfortable sensation that is hard to name.
- It begins or worsens during rest, such as sitting or lying down.
- It is relieved by movement, for as long as the movement continues.
- It is worse in the evening or at night than during the day.
- It is not better explained by cramp, arthritis, positional discomfort or swollen legs.
That fourth point is the one people overlook when describing it. Leg discomfort that is equally bad at eleven in the morning and eleven at night is probably not restless legs. The daily rhythm is the fingerprint.
Most people with the condition also have periodic limb movements during sleep, small repetitive jerks of the legs they never notice themselves. A partner usually does. If someone has moved to the spare room because of the kicking, that is clinical information worth bringing to the appointment.
The iron connection
The most useful thing to understand about restless legs is that it is closely tied to iron, specifically to how much iron is available in the brain rather than how anaemic you are. Someone can have a perfectly normal haemoglobin and still have iron stores too low for comfort, so a standard full blood count will not answer the question. Ask specifically about serum ferritin and transferrin saturation. Sleep specialists generally consider iron supplementation worthwhile when ferritin sits below about 75 micrograms per litre, which is a good deal higher than the threshold used to diagnose ordinary iron deficiency anaemia. In other words, results reported back to you as “normal” may still be low enough to be driving the symptoms.
Where oral iron is appropriate it is usually taken on an empty stomach with vitamin C, and every second day is often better absorbed than daily. Where absorption is poor, intravenous iron in a hospital day setting is worth discussing. Do not start iron on your own initiative: too much is harmful, and the point of the test is to find out whether you need it at all. Kidney disease is the other classic secondary cause, and symptoms appearing alongside numbness or weakness deserve a look at nerve health too.
Check the medicine cabinet first
A frustrating number of cases are made worse by something on the repeat prescription or bought over the counter: sedating antihistamines, particularly the older ones taken as sleep aids, anti-sickness medicines such as metoclopramide and prochlorperazine, many antidepressants including the SSRIs and mirtazapine, and some antipsychotics.
None of these should be stopped on your own. Some are doing important work and stopping abruptly can be dangerous. Bring the full list, including anything bought without a prescription, to your GP or community pharmacist and ask whether an alternative exists.
What has changed in treatment
This part is worth knowing even if you were diagnosed years ago. For a long time the first medicines offered were dopamine agonists such as pramipexole and ropinirole. They work impressively well at first. The difficulty is augmentation: after months or years, symptoms start earlier in the day, become more intense and spread to the arms and trunk. The tablet that was helping becomes part of the problem.
Current specialist guidance therefore advises against these medicines as long-term treatment, pointing instead towards correcting iron stores and, where a drug is needed, towards gabapentinoids such as gabapentin or pregabalin. Those carry their own considerations after 50, notably drowsiness, unsteadiness and a raised risk of falls, so doses are started low and reviewed. If you have taken a dopamine agonist for years and your symptoms have crept earlier into the day, that is not you imagining things and it is a good reason to ask for a review.
What helps without a prescription
Regular moderate exercise helps, though an intense session late in the evening can backfire. Consistent bed and rising times matter more than total hours. Caffeine, alcohol and nicotine reliably make symptoms worse in people who are susceptible, and dropping the afternoon coffee is a fair experiment to run for a fortnight. Stretching, a warm bath, massage, and getting up to walk rather than lying there fighting it are all reasonable. None of this replaces the ferritin test, but it is worth doing alongside.
Bringing it to your GP
Because this is a clinical diagnosis, the quality of your description does most of the work. Keep a two week diary before the appointment: when symptoms start, what you were doing, what relieved them, and how long it took to fall asleep. Bring your medicines list, ask directly for serum ferritin and transferrin saturation, and if a partner has noticed leg jerking at night, say so.
Most cases are managed entirely in general practice. Where symptoms are severe, where augmentation has set in, or where sleep apnoea is also suspected, referral to a sleep service or neurology is appropriate, and waiting times in Ireland vary considerably by region. Medical card and GP visit card holders have consultations covered, and for everyone else the Drug Payment Scheme caps household spending on prescribed medicines at €80 a month.
The reason to bother with any of this is not the legs. It is the year of shallow, broken sleep behind them, and the fatigue, low mood and lost concentration that follow. That is very treatable, and it is not something to be quietly endured because it sounds like a small complaint. At Críonna Health we keep coming back to the same point: the symptoms people apologise for mentioning are usually the ones most worth mentioning.
This article is for general information and is not a substitute for individual medical advice. Speak to your GP or pharmacist about your own circumstances.
📷 Photo by Polina Kuzovkova on Unsplash
