Restless legs syndrome

Restless legs syndrome (RLS) causes a strong urge to move your legs. The urge usually comes with odd, unpleasant feelings deep in the legs. It shows up when you sit or lie still, and it is often worst in the evening and at night.¹ Because of that timing, RLS can make it very hard to fall asleep and stay asleep.

RLS is common, and it gets more common with age.² The good news is that it can usually be eased. Treatment advice changed in 2024. Doctors now check iron first and are much more careful with the dopamine medicines that used to be the usual first choice.⁴

What RLS feels like

People describe the feelings in many ways: crawling, creeping, pulling, aching, throbbing, itching, tingling or burning.^1,10 Some people say it is hard to describe at all. It is not the same as a leg cramp, and the skin itself is not the problem.

Doctors look for four main features:¹

• An urge to move the legs, usually with uncomfortable feelings.
• It starts or gets worse when you are still, such as sitting in a car, at a movie, or lying in bed.
• Moving helps, at least while you keep moving. Walking or stretching brings relief, but the feelings often come back when you stop.
• It is worse in the late afternoon, evening or night.

Both legs are usually affected. The arms are sometimes involved. In severe cases, the feelings can spread to other parts of the body.^1,2

RLS ranges from mild to severe. Some people notice it a few times a month. Others have it every night.² Poor sleep from RLS can lead to daytime sleepiness, trouble focusing, low mood and anxiety.¹ See Sleep, mood and anxiety.

Leg jerks during sleep

Most people with RLS also have periodic limb movements of sleep. These are leg twitches or kicks that repeat about every 15 to 40 seconds while you sleep.¹ You may not know it happens. A bed partner often notices first.

Who gets RLS, and why

RLS can start at any age. It is more common in women, and the number of people with it rises with age.²

• Early-onset RLS starts before age 45. It often runs in families and tends to worsen slowly.²
• Late-onset RLS starts after 45. It tends to get worse more quickly.²

In many people, there is no single clear cause. Genes play a part. Between 40 and 90 out of 100 people with RLS have a parent, brother, sister or child with it.²

Low iron in the brain seems to be a key piece. Low brain iron may upset dopamine, a chemical messenger the brain uses to control movement.² A routine blood test does not show how much iron is in the brain, which is one reason doctors use special targets for RLS.^1,3

RLS is also more likely with:^1,2

• Iron deficiency or anemia (low red blood cells)
• Kidney failure, especially people on dialysis
• Pregnancy, mostly in the last three months. It usually goes away after the baby is born.
• Nerve damage in the legs (neuropathy), diabetes, multiple sclerosis, rheumatoid arthritis and Parkinson's disease
• Untreated sleep apnea and too little sleep. See Sleep apnea.

Things that can make RLS worse

Alcohol, nicotine and caffeine can all worsen symptoms.¹ Some medicines can too:^1,5

• Some anti-nausea medicines
• Antipsychotic medicines
• Antidepressants that raise serotonin, a brain chemical (such as many SSRIs). See Antidepressant medicines.
• Sedating antihistamines, such as diphenhydramine. This is found in many over-the-counter "PM" sleep and allergy products. See Sleep medicines.

Do not stop a prescribed medicine on your own. If you think a medicine is making your legs worse, talk with your doctor or pharmacist before changing anything. There may be a better option for you.

How RLS is diagnosed

There is no single test for RLS. The doctor listens to how you describe your symptoms and when they happen. They also ask about family history and your medicines, and do a physical exam.¹

Blood tests help find things that cause or worsen RLS, such as low iron or kidney problems.¹ A sleep study is not always needed. Your doctor may suggest one if sleep apnea is a concern.

Why iron comes first

The 2024 AASM guideline says doctors should check iron in everyone with RLS that bothers them.⁴ Two blood tests matter most:

• Ferritin, which shows how much iron your body has stored.
• Transferrin saturation, which shows how much iron is moving in your blood.

For the most accurate result, the test should be done in the morning. You should avoid iron pills and iron-rich foods for at least 24 hours before the blood draw.^4,5

For adults with RLS, the guideline suggests iron treatment if ferritin is 75 ng/mL or lower, or if transferrin saturation is below 20%. If ferritin is between 75 and 100, iron given by IV (through a vein) may still help.⁴ These targets are higher than many people expect. Ask your doctor for your actual numbers, not just whether your results were "normal."

Iron can be taken by mouth or given by IV. One IV form, ferric carboxymaltose, received the guideline's strongest support. Iron pills (ferrous sulfate) and some other IV forms received weaker support.⁴

The big change: dopamine drugs and augmentation

For many years, the first medicines for RLS were dopamine agonists. These drugs act like dopamine in the brain. They include pramipexole (Mirapex), ropinirole (Requip) and the rotigotine skin patch (Neupro).⁴ Levodopa, a Parkinson's medicine, was also used.

These drugs often work well at first. The problem is what can happen over months to years. This is called augmentation. RLS slowly gets worse because of the medicine itself.⁵ Signs of augmentation include:^5,7

• Symptoms start earlier in the day than before, for example in the afternoon instead of at night
• Symptoms start sooner after you sit down or lie down
• The feelings get stronger
• The feelings spread to the arms or other parts of the body

Augmentation was not seen in the short studies used to approve these drugs. It shows up with long-term use and is more common and more severe at higher doses.⁵ Once it happens, it is not clear that it can always be reversed. Coming off the drug can cause a strong rebound of symptoms for a while.⁵

Because of this, the 2024 AASM guideline changed its advice. It now suggests against standard use of pramipexole, ropinirole, rotigotine and levodopa for RLS. It strongly advises against cabergoline, another dopamine drug.⁴ The guideline still allows dopamine drugs for people who value short-term relief more than long-term risk, after talking it through with their doctor.^4,5

Dopamine agonists have other side effects to know about. Some people suddenly fall asleep during daily activities, even while driving. Some develop strong urges they cannot control, such as gambling, shopping, eating or sexual urges.⁷ Tell your doctor right away if you notice any of these. People do not always see these changes in themselves, so family members may notice first.⁷

Treatments that work

The guideline advises starting with things that make RLS worse: alcohol, caffeine, certain medicines and untreated sleep apnea.⁴ After that, here is how the main options compare.

The guideline also lists some treatments it suggests against for RLS. These include clonazepam, valerian, bupropion, carbamazepine and valproic acid.⁴

Side effects of gabapentin family medicines

In studies of Horizant for RLS, about 1 in 5 people (20%) felt sleepy, compared with 6% on a placebo (a look-alike pill with no medicine). About 1 in 8 (13%) felt dizzy, compared with 4% on placebo.⁶ These effects can make driving unsafe.⁶ Sleepiness and dizziness can also raise the chance of a fall.

In December 2019, the FDA warned that gabapentin and pregabalin can cause serious breathing problems. Risk is higher in older adults, in people with lung disease such as COPD, and in people who also take opioids or other sedating medicines.^8,5 Horizant also carries a warning about suicidal thoughts. It should not be stopped suddenly.⁶

Your doctor usually starts low and goes slow, and adjusts for kidney function.⁸

RLS in later life

RLS becomes more common as people age.² Older adults are also more likely to have conditions linked to RLS, such as kidney disease, neuropathy and Parkinson's disease.^1,2 They often take more medicines, and some of these can make RLS worse.

A few points matter more in later life:

• Ask for a medicine review. A pharmacist or doctor can check for medicines that worsen RLS. See Medicines that can affect mood and memory.
• Watch for sleepiness and dizziness. Both the gabapentin family and dopamine drugs can cause them, which raises fall risk.^6,7 See Preventing falls.
• Be careful with sedating combinations. Breathing risks from gabapentin family medicines rise with age and when mixed with opioids, sleeping pills or anxiety medicines.⁸
• Kidney disease changes the plan. For people on dialysis, the guideline suggests gabapentin, IV iron sucrose and vitamin C, and suggests against routine levodopa and rotigotine.⁴

Someone living with dementia may not be able to describe these feelings. If you care for someone who rubs their legs, kicks or gets up to walk most evenings, write down when it happens and share it with their doctor. See Sleep in later life.

When to get help

See your doctor if:

• Leg feelings keep you from sleeping or make you tired during the day.
• You are pregnant and have new RLS symptoms.
• You take a dopamine drug for RLS and your symptoms now start earlier, feel stronger or have spread to your arms. These can be signs of augmentation.^5,7
• You notice new urges to gamble, shop or eat that feel hard to control.⁷

Will RLS go away on its own?

Sometimes symptoms ease for weeks or months, mostly early on. But RLS often comes back and can get worse over time.¹ RLS during pregnancy usually goes away after delivery.¹

My blood iron was "normal." Could iron still help?

It might. A routine blood test does not show how much iron is in the brain, and the guideline uses its own iron targets for RLS.^3,4 Ask your doctor for your ferritin and transferrin saturation numbers and whether iron treatment fits you.

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.