What is restless leg syndrome?
Restless legs syndrome (RLS) is a sensorimotor disorder characterized by a complaint of a strong, nearly irresistible urge to move the limbs. RLS is very common, with around one in six people reporting that they get restless legs symptoms on a reasonably regular basis and most pregnant ladies experiencing restless legs at some stage during the pregnancy, often in the second and third trimester. The diagnosis of restless legs syndrome is made on the basis of symptoms rather than blood tests or other investigations.
Diagnostic criteria for restless legs syndrome
There are 4 main diagnostic criteria for restless legs syndrome. If people have all 4 of these criteria they are felt to have a diagnosis of restless legs syndrome. The 4 criteria are:
- An irresistible feeling of needing to move the legs
- The feeling is worse in the evening or coming up to the time of getting into bed
- Symptoms are worse when sitting still
- Symptoms are made better by getting up and moving around
There are also associated criteria which support a diagnosis of RLS:
- A family history of RLS
- Response to dopaminergic therapy
- Presence of periodic limb movements
What are restless legs symptoms?
People describe these symptoms in different ways. Often they will use terms like “restless,” “uncomfortable,” “twitchy,” “need to stretch,” “urge to move,” and “legs want to move on their own.” About half express their RLS sensations as painful. Here are some examples of patients’ descriptions of their restless legs symptoms:
- “Like a toothache in my legs.”
- “……with Pepsi-cola in my veins.”
- “It felt like rats were crawling on my legs at night.”
- “I have jumpy legs….I rock and roll for hours sometimes.”
- “….tickling pain……difficult to explain….it is inside my bones and causes me to beat on my thighs.”
- “….as if the inside wants to get outside but there is no visible muscle twitching, cramping or movement apparent.”
Restless legs symptoms were initially described by Sir Thomas Willis in 1683, hence the condition is now sometimes called Willis-Ekbom disease. This is what Thomas Willis wrote to describe RLS:
“Wherefore to some, when being a-Bed they betake themselves to sleep, presently in the Arms and Legs, Leapings and Contractions of the Tendons, and so great a Restlessness and Tossings of other Members ensue, that the diseased are no more able to sleep, than if they were in a Place of the greatest Torture.”
What isn’t restless legs?
- Periodic limb movements
- Leg twitches every 20-40 seconds during sleep or resting in bed
- Movements noted by partner or on a sleep study but not causing symptoms
- Nocturnal cramps
- Fidgeting (whilst awake)
- Restlessness (during sleep)
‘Primary’ versus ‘secondary’ restless legs syndrome
Early-onset RLS (prior to age 45 years) is usually more familial and associated with slower progression than late-onset RLS. Some people call this ‘primary’ RLS. When RLS symptoms come on later in life or during pregnancy they most commonly are ‘secondary’ to another condition such as iron deficiency, chronic renal failure, medications, peripheral neuropathy or nerve compression.
What should I do if I have RLS?
Many people have RLS symptoms, but often it’s just something they notice occasionally and doesn’t cause them particular problems. In that case nothing needs to be done. However, if RLS are disturbing, occurring most days, or disrupting sleep, it’s worth discussing them with your doctor or health professional.
Your health professional, who knows your clinical history, will look at your overall health to see if there are factors that may be predisposing you to RLS and need to be addressed. It’s also important to conduct a neurological examination of the legs to check for neuropathy or nerve compression, and I would also usually check iron levels, as low iron stores (ferritin levels) are associated with RLS symptoms. That requires a blood test.
I also find completing a restless legs severity rating scale helpful as an initial measurement. It helps determine the severity of RLS symptoms and also gives a baseline that can be re-checked to see how people respond to treatment.
A range of treatments for RLS are available, both non-drug and drug-based strategies, that are discussed in this post.
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