Yes, Your Restless Legs Can Be Painful

It can be difficult to explain the sensations that occur when we have restless legs syndrome (RLS).

Sometimes RLS can overcome us with a kind of inexplicable urgency to move, or there’s a sensation that can best be described as pulling, drawing, or crawling. The feelings can intensify neurologically as itching, tingling, prickling, throbbing. Even so, these don’t necessarily translate into a painful condition.

Unless they do.

Is pain a symptom of RLS? For some, the answer is yes.

Pain and restless legs syndrome

Roughly 75 to 80 percent of people with RLS do not experience pain with their condition.¹ However, for the rest, the discomfort of RLS is more than just distracting and annoying.

While RLS doesn’t need to be painful for it to be completely disruptive of sleep, you can bet that people who experience a pain element to their condition are also losing sleep over it.

Could painful RLS be a separate condition?

Maybe. Research published in 2019 describes mounting evidence of “the severe and unbearable nature of the painful form of RLS.” Those scientists are developing an RLS pain scale to complement the international RLS severity scale to better identify those with RLS suffering from intractable pain.²

The timing of RLS onset may be a factor

It appears that the time you first experience RLS may affect the likelihood you’ll have pain symptoms.³

• People who experience RLS in childhood through adolescence usually have less pain (but not always; see below).
• People who experience RLS only as adults may experience more issues with pain related to neurological problems or medications.

Of course, exceptions exist in either case. What’s consistent is the ongoing link between RLS and pain.

Forms of relief for painful RLS

The most common go-to response to RLS is movement. Stretching, walking, shaking the legs out, or postural shifts are often the fastest way to deal with RLS during the day.

However, at night, we want the stillness of sleep. Movement isn’t a useful option. Adding pain to that experience only worsens matters. Pain notoriously leads to problems with both falling asleep and staying asleep.⁴ Poor sleep then leads to a lower pain threshold, which is linked to poor sleep. The pain-sleeplessness cycle then continues, miserably.⁵

Medications are one approach for treating the pain that RLS brings. While people without pain symptoms may be placed on dopamine agents to control their RLS, other classes of drugs may be called into play when RLS pain is a factor.^1,6,7

• Anti-seizure drugs (gabapentin, lamotrigine, pregabalin) ca both reduce pain and relieve unpleasant sensation.
• Sedatives may be indicated. It’s not that these provide pain relief as much as they help people sleep through the pain.
• Low doses of opioids might be used to treat RLS pain when first- and second-line treatments don’t work.

RLS mimics and other connections

Someone diagnosed with RLS who experiences pain may want to report their pain symptoms to their doctor to ensure they aren’t experiencing a different condition.

Top of mind today is a pain-related condition that doctors may likely investigate when patients complain about painful restless legs: akathisia (literally meaning “inability to sit still”).⁸

Akathisia occurs as the result of problems with the autonomic nervous system.^2,3 This RLS “mimic” disorder leaves people feeling agitated with quivering muscles and sensations—including pain— that only happen while sitting. Often, the feeling takes place throughout the body and is not reserved to just the limbs.⁹

The pain element in akathisia is often overlooked in healthcare settings, leading to mental health and other problems linked to untreated pain.¹⁰ It is a serious pain condition with some distinct links to suicidal ideation that should not be overlooked.⁸

Other painful sensations that may need to be ruled out when talking about RLS including:^3,11

• Peripheral neuropathies (pain in the nerves of the hands and feet)
• “Painful legs and moving toes syndrome” (a rare condition)
• Meralgia paresthetica (one-sided burning pain in the front and side of the thigh)
• Nocturnal leg cramps (“charleyhorses”)
• Pinched nerves in the back

The mistake of calling RLS 'growing pains'

It’s worth noting that children and teens with undiagnosed RLS may sometimes be told they’re experiencing “growing pains,” the term itself dismissing the problem as temporary and normal.

Not so fast. Some research points to links between musculoskeletal pain and RLS in young people. Dimensions of pain they experience have been associated with lifelong chronic pain conditions like fibromyalgia.⁵

Not only is it inaccurate to call these painful sensations “growing pains,” but when complaints of pain are dismissed by parents and doctors, these young people face barriers to medical care as well as pain relief so necessary for a good night’s sleep.