Restless legs syndrome
In the evening, once you finally sit down or lie down, something hard to describe starts up in the legs — not quite pain, more a heavy stirring deep inside…
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Medicines commonly prescribed for Restless legs syndrome
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: MODIFIED-RELEASE TABLET, 2 mgActive substance: ropiniroleManufacturer: Sandoz Farmaceutica S.A.Prescription requiredDosage form: TABLET, 0.18 mgActive substance: pramipexoleManufacturer: Krka D.D. Novo MestoPrescription requiredDosage form: MODIFIED-RELEASE TABLET, 2 mgActive substance: ropiniroleManufacturer: Krka D.D. Novo MestoPrescription required
In the evening, once you finally sit down or lie down, something hard to describe starts up in the legs — not quite pain, more a heavy stirring deep inside — and with it comes the need to get up and walk. You get up, take a turn round the room, and it eases. You sit down again and it starts over. That is restless legs syndrome. It is often put down to nerves, tiredness or insomnia, yet it is a neurological disorder in its own right and, most importantly, there is frequently a cause behind it that a blood test can find and that can be put right.
What it actually feels like
Everyone describes it differently: crawling, tingling, an itch far below the skin, a bursting pressure, fizzing in the bones, a dull dragging ache. The words are hard to find, and people worry they will not be understood. They will be: a doctor recognises the syndrome not from the description of the sensation but from four features, and those are the same in everyone.
- There is an overwhelming urge to move the legs. It is usually preceded or accompanied by an unpleasant sensation deep in the calves or thighs.
- It appears or worsens at rest, sitting or lying down.
- It eases at least partly with movement: walking, stretching or flexing the legs relieves it for as long as you keep moving.
- Evening and night are worse than daytime. Even in severe cases the morning is usually the calm part of the day.
The sensations are almost always in both legs, though not necessarily to the same degree. After many years they sometimes spread to the arms as well. Some people also have periodic jerking of the legs during sleep that they know nothing about — it is the bed partner who notices.
The main price paid is sleep. Falling asleep is hard, because sleep requires lying still and lying still is precisely what is unbearable. Hence the daytime sleepiness, the irritability, the trouble concentrating. That is what most people actually come to the doctor with, calling it insomnia.
What it gets confused with
Several conditions look similar, and they can be told apart fairly clearly.
Night cramps are a sudden painful spasm: the muscle goes hard, and you can see and feel it. In restless legs there is no spasm, only the urge to move.
Damage to the peripheral nerves from diabetes or vitamin deficiency causes burning, numbness and pins and needles, but these do not settle with walking and are not tied so tightly to the evening. That said, one does not exclude the other: neuropathy can itself set off restless legs.
Leg pain from poor circulation behaves the opposite way round: it comes on with walking and eases when you stop. That pattern needs assessing separately by a doctor.
Akathisia is also an inability to keep still, but it involves the whole body, is not tied to the evening, and is almost always linked to particular medicines.
A word about children: in them the syndrome is often mistaken for growing pains or fidgetiness. If a child cannot settle at bedtime night after night and rubs or works the legs constantly, it is worth raising with a doctor rather than waiting to be grown out of.
Iron: why ferritin is checked rather than haemoglobin
This is the most useful part of the page and the part most often missed.
The nerve cells that govern movement need iron to work with dopamine. And what counts is not so much the iron store in the blood as the store in the brain. That is why a shortage of iron can produce this syndrome long before true anaemia develops — and the ordinary haemoglobin test will come back normal.
The practical conclusion follows: in restless legs syndrome the test to ask for is ferritin, the protein that reflects iron stores, along with transferrin saturation — not simply a full blood count. And the level below which iron is worth giving in this syndrome is considerably higher than the level at which a doctor talks about anaemia: figures flagged as normal on the report may still be too low here. If your doctor stopped at haemoglobin and said all was fine, ask for ferritin to be added. That is a reasonable request, not nit-picking.
One important caveat: ferritin rises with any inflammation, so a sample taken during an infection or a flare of a long-term illness can mislead. And taking iron on your own initiative just in case is a bad idea: too much is harmful, and whether supplements are needed, in what form and for how long is a decision for the doctor with the numbers in front of them.
Medicines that trigger it or make it worse
Quite often restless legs do not turn up on their own but follow a new prescription. Going through the list of what you take is the second most important step after the iron test.
- Antidepressants. Most modern medicines that raise serotonin can provoke or aggravate the symptoms. That does not mean treatment should be abandoned: within the group individual drugs behave differently, and the doctor can switch.
- Antipsychotics and anti-sickness drugs that block dopamine. They interfere with exactly the mechanism that is already working badly in this condition.
- Older antihistamines — the first-generation allergy and travel-sickness remedies. Their catch is that they go into many over-the-counter sleep aids and combined cold sachets. Someone takes one in order to sleep and makes matters worse.
- Lithium and some blood pressure medicines occasionally join the list.
Never stop a prescribed medicine on your own, least of all an antidepressant or an antipsychotic: abrupt withdrawal is more dangerous than the syndrome itself. Bring the full list to the doctor, including vitamins, supplements and anything bought over the counter, and decide together.
Other causes, and when to see a doctor
In some people there is no clear cause: the syndrome starts young, runs for decades and turns up in blood relatives — the inherited form. In everyone else there is something specific behind it.
- Pregnancy, most often in the last months. It usually goes soon after the birth; checking iron matters especially here.
- Chronic kidney disease, particularly on dialysis — one of the commonest causes.
- Peripheral nerve damage, including from diabetes.
- Thyroid disorders and rheumatic diseases.
See a doctor if the symptoms stop you falling asleep or wake you at night, if the lost sleep is spoiling your days, or if what you have tried yourself has not worked — and without fail if the sensations are in one leg only, come with weakness, numbness or swelling, or are getting worse fast, over weeks. That last pattern is not this syndrome, and another diagnosis needs looking for.
What you can do yourself
Mild cases can often be held in check without medication.
- A steady sleep routine: bed and waking at roughly the same times, a dark and quiet room. Short sleep worsens the symptoms and the symptoms shorten sleep; the circle is broken from whichever side you can reach.
- Moderate activity during the day — walking, stretching, swimming. Moderate is the operative word: an exhausting workout late in the evening usually makes the night worse.
- When it hits, get up and walk, stretch the calves, rub the legs, apply warmth or, for some people, cold instead.
- Less caffeine, especially after midday; caffeine hides not only in coffee but in tea, cola, energy drinks and chocolate.
- Alcohol in the evening and smoking both worsen symptoms, though many people believe alcohol helps them drop off.
- Occupying the hands and the head during an episode — reading, talking, a puzzle — makes it noticeably easier to bear.
- On long journeys take an aisle seat and get up to stretch. The cinema, aeroplanes and long meetings are the hardest situations and are worth planning for.
When medication is needed, and what augmentation is
If a cause is found, that is what gets treated first: iron is replaced, kidney treatment adjusted, the drug that set it all off changed. Often that is enough.
When symptoms are severe and persistent, medication is prescribed. These days the first choice is usually a drug from the anti-epileptic group used for nerve pain — gabapentin or pregabalin. They reduce the unpleasant sensations and improve sleep along the way.
With dopamine-raising drugs — for decades the mainstay of treatment — the story has changed, and it is worth knowing in advance. On long-term use a substantial proportion of people develop augmentation: the symptoms do not simply return, they change for the worse. The signs are these:
- the sensations start earlier — no longer late in the evening but in the afternoon or even the morning;
- they are more intense than before treatment began;
- they spread to the arms, the back, the whole body;
- they come on faster, within minutes of sitting down.
The trap is that the natural response, raising the dose, makes it worse still. That is why these drugs are no longer regarded as first choice, and if they are prescribed it is at the lowest dose that works and with follow-up arranged. If you recognise the picture above, do not increase the dose and do not stop abruptly — see your doctor, because the regimen has to be changed gradually.
Opioid painkillers are kept for severe cases that respond to nothing else. And one more thing: living with this for years is wearing, and lost sleep takes a toll on mood. If low mood has set in, say so at the appointment — it is part of the illness, not a weakness.
Online consultation
Restless legs syndrome is diagnosed from what the patient describes rather than from a machine, so an appointment at a distance works here almost as well as one in person.
It suits working out whether this really is restless legs rather than cramps, neuropathy or circulation pain; drawing up the list of tests, ferritin included, and going through the results afterwards; reviewing your medicines to find the culprit among them; deciding what to do about symptoms in pregnancy; and judging whether augmentation has set in if you have been on a dopamine-raising drug for a long time.
Have ready: the full list of medicines and supplements with doses, any recent blood results, and brief notes from the past week — what time the sensations start, what relieves them, how many times a night you have had to get up. Think back to whether parents or siblings have anything similar: the family history helps a great deal.
This material is for information only and does not replace medical advice.
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