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Restless Legs Syndrome

Condition: Restless Legs Syndrome (RLS)

Brief Overview: According to UpToDate, “Restless legs syndrome (RLS) is a common sleep-related movement disorder characterized by an often unpleasant or uncomfortable urge to move the legs that occurs during periods of inactivity, particularly in the evenings, and is transiently relieved by movement. During sleep, most patients with RLS have characteristic limb movements, called periodic limb movements of sleep (PLMS), which may or may not be associated with arousal from sleep.”

Prevalence: According to UpToDate, “Restless legs syndrome (RLS) of any severity occurs in 5 to 15 percent of adults in studies that include primarily European and North American populations [1,2]. Estimates of clinically significant RLS are lower (2 to 3 percent), and studies that rely exclusively on questionnaires may overestimate prevalence.”

Etiology: Per UpToDate, “The pathophysiologic basis of restless legs syndrome (RLS) remains incompletely understood, although studies have identified a variety of both central and peripheral nervous system abnormalities in patients with the disorder. There is no evidence that neurodegeneration plays a role.” Evidence suggests important roles for:

  • Brain iron deficiency or altered iron handling.
  • Dysfunction involving dopamine-related neurological pathways.
  • Genetic susceptibility.

RLS is strongly heritable; approximately half of patients with RLS have a first-degree relative with the disorder.

RLS may occur without an identifiable underlying condition or may occur in association with another medical condition.

Risk Factors:

  • Female
  • Pregnancy
  • Older age
  • Low iron stores
  • Family history
  • Medications – antihistamines, dopamine receptor blocking agents, certain antidepressants
  • Per UpToDate, “A variety of comorbid conditions are associated with an increased risk of RLS, including:
    • End-stage kidney disease
    • Diabetes
    • Multiple sclerosis
    • Peripheral neuropathy
    • Spinal cord disorders
    • Migraine
    • Parkinson disease
    • Essential tremor
    • Other movement disorders.”

Commonly Associated Conditions:

  • Iron deficiency.
  • Chronic kidney disease/end-stage renal disease.
  • Peripheral neuropathy.
  • Obstructive sleep apnea.
  • Insomnia.
  • Periodic limb movements of sleep.
  • Parkinson's disease.
  • Diabetes mellitus.
  • Depression and anxiety.
  • Chronic pain conditions.

Common Medications:

  • Iron replacement
  • Pregabalin, gabapentin, gabapentin enacarbil
  • Pramipexole, ropinirole, rotigotine
  • For intermittent symptoms: carbidopa-levodopa, benzodiazepines (clonazepam)

Common Labs, Imaging, and Tests:

  • Labs: iron studies, BUN, creatinine
  • Polysomnography (sleep study) – not required for diagnosis, but may be ordered
  • Nerve conduction velocities, electromyogram (EMG) may be ordered

Common Symptoms: The hallmark symptoms are:

  • Irresistible urge to move the legs.
  • Uncomfortable leg sensations.
  • Symptoms beginning or worsening while sitting or lying down.
  • Temporary improvement with walking, stretching, or moving the legs.
  • Symptoms primarily occurring or becoming worse in the evening or nighttime.

Patients may describe sensations as:

  • Crawling.
  • Creeping.
  • Pulling.
  • Tingling.
  • Aching.
  • Throbbing.
  • Itching.
  • Burning.
  • Electric sensations.
  • "Can't keep my legs still."
  • An internal feeling of restlessness.

Other effects may include:

  • Difficulty falling asleep.
  • Repeated nighttime awakenings.
  • Daytime fatigue.
  • Excessive sleepiness.
  • Irritability.
  • Difficulty concentrating.
  • Memory complaints.
  • Anxiety or depressed mood related to chronic sleep disruption.

Common Treatments:

  • Medication (see above)
  • According to UpToDate, behavioral strategies include:
    • Mental alerting activities, such as working on a computer or solving crossword puzzles, at times of rest or boredom
    • Avoidance of aggravating factors, including consideration of withdrawal of possibly predisposing medications
    • Moderate regular exercise
    • A trial of abstinence from alcohol
    • For symptomatic relief – walking, bicycling, soaking the affected limbs, and leg massage, including pneumatic compression
    • Short daily hemodialysis for patients with end-stage kidney disease
  • According to UpToDate, avoidance of aggravating factors, like:
    • Insufficient sleep
    • Medication side effects
  • Yoga, acupuncture
  • Bilateral peroneal nerve stimulation (TOMAC)

Physical Findings: Most patients with primary RLS have no specific abnormal neurological finding on examination.

Potential Complications and Contraindications: Potential consequences of inadequately controlled RLS include:

  • Chronic insomnia.
  • Sleep deprivation.
  • Daytime fatigue or sleepiness.
  • Impaired concentration.
  • Mood changes.
  • Reduced quality of life.
  • Reduced daytime functioning.

Common Medications That May Worsen RLS

Potential RLS-aggravating medications include certain:

  • Sedating antihistamines, including some OTC sleep and allergy products.
  • Serotonergic antidepressants.
  • Antipsychotic/antidopaminergic medications.
  • Anti-nausea medications that block dopamine.

The AASM recommends reviewing these medications as part of initial RLS management.

Important: These medications may be medically necessary. Do not tell a patient to stop a medication because it could worsen RLS. Document the medication and symptoms and advise the patient to discuss the concern with the prescribing provider/neurologist.

General Health and Lifestyle Guidance:

  • Maintain a regular sleep and wake schedule.
  • Aim for adequate sleep because sleep deprivation may worsen RLS.
  • Engage in regular, moderate physical activity as medically appropriate.
  • Avoid strenuous exercise immediately before bedtime if the patient notices it worsens symptoms.
  • Stretch or walk when symptoms occur.
  • Massage the legs if helpful.
  • A warm bath may provide temporary symptom relief.
  • Heat or cold may help some patients.
  • Consider reducing caffeine if it worsens symptoms.
  • Limit or avoid alcohol if it aggravates symptoms.
  • Avoid nicotine.
  • Review OTC sleep and allergy medications with the healthcare provider or pharmacist.
  • Maintain treatment for obstructive sleep apnea when applicable.
  • Keep neurology or sleep-medicine follow-up appointments.
  • Take prescribed medication exactly as directed.

Suggested Questions to Ask Patients:

RLS Symptoms

  • Have your restless-leg symptoms changed since our last call?
  • How often are you experiencing symptoms?
  • What time of day do your symptoms usually begin?
  • Are symptoms mostly occurring in the evening or at night?
  • Do symptoms begin while you are sitting or lying down?
  • Does walking, stretching, or moving your legs provide relief?
  • How would you describe the sensation in your legs?
  • Are both legs affected?
  • Have symptoms begun affecting your arms or another part of your body?

Sleep

  • Are your symptoms making it difficult to fall asleep?
  • Are you waking during the night because of your legs?
  • Approximately how many hours of sleep are you getting?
  • Do you feel excessively tired or sleepy during the daytime?
  • Has anyone told you that you kick or repeatedly move your legs while sleeping?
  • Do you snore loudly or have you been told you stop breathing during sleep?
  • Do you use CPAP or another treatment for sleep apnea?

Possible Augmentation

For patients taking pramipexole, ropinirole, rotigotine, levodopa, or another dopaminergic medication:

  • Are your symptoms starting earlier in the day than they used to?
  • Are your symptoms becoming more intense?
  • Do symptoms start more quickly when you sit or lie down?
  • Have symptoms spread from your legs into your arms or another body area?
  • Do you feel that you need your medication earlier or more frequently than you previously did?

If yes, advise the patient to report the change to the prescribing provider/neurologist.

Medication Assessment

  • What medication are you taking for RLS?
  • Are you taking it exactly as prescribed?
  • Is it helping?
  • Have you noticed dizziness, sleepiness, balance problems, swelling, confusion, or falls?
  • Have any medications recently been started or changed?
  • Are you taking any OTC sleep aids or allergy medications?
  • Have you recently started or changed an antidepressant, antipsychotic, or nausea medication?
  • Are you taking an opioid, benzodiazepine, or another medication that makes you sleepy?

Iron and Medical Conditions

  • Have you had iron studies checked recently?
  • Has your healthcare provider recommended iron supplementation?
  • Do you have chronic kidney disease or receive dialysis?
  • Have you been diagnosed with neuropathy?
  • Do you have sleep apnea?
  • Are you currently following with neurology or a sleep specialist?

Daily Impact

  • Are your symptoms affecting your mood or ability to concentrate?
  • Are you avoiding travel, movies, church, restaurants, or other activities because sitting worsens your symptoms?
  • Is daytime sleepiness affecting your daily activities?
  • Have you had any falls or near-falls?

⚠️ Standard Neurology Symptom-Change Guidance

For any new neurologic symptom or change/worsening of an existing neurologic symptom, advise the patient or caregiver to contact the patient's neurologist to report the change.

Examples include new or worsening:

  • Restless-leg symptoms.
  • Numbness or tingling.
  • Weakness.
  • Balance or walking problems.
  • Falls.
  • Tremor or other abnormal movements.
  • Pain with neurological features.
  • Symptoms spreading to a new body area.
  • Other neurological changes.

Care coordinators should not independently determine that a new or worsening neurological symptom is simply expected progression of RLS.

If symptoms meet criteria for urgent or emergency evaluation, do not delay appropriate care while waiting for the neurologist to respond. Follow organizational escalation policies and direct the patient to the appropriate level of urgent or emergency evaluation.

⚠️ Telephone Escalation Guidance

RLS itself does not typically cause acute neurological emergencies. A sudden or markedly different symptom pattern should raise concern for another condition.

Emergency — Follow Emergency/911 Protocol

Follow organizational emergency protocol for:

  • Sudden one-sided weakness or numbness.
  • Facial droop.
  • Sudden difficulty speaking.
  • Sudden severe difficulty walking or coordinating movements.
  • New loss of consciousness.
  • Seizure.
  • Severe breathing difficulty.
  • Inability to awaken normally or extreme sedation, particularly in a patient taking gabapentinoids, opioids, benzodiazepines, or other CNS depressants.
  • Serious fall with head injury, significant bleeding, loss of consciousness, or inability to stand afterward.

Do not attribute these symptoms to the patient's RLS.

Prompt Provider/Neurology Evaluation

Advise the patient to contact the neurologist or appropriate healthcare provider for:

  • New or significantly worsening RLS symptoms.
  • Symptoms beginning substantially earlier in the day.
  • Symptoms spreading to the arms or other body areas.
  • Suspected augmentation.
  • New numbness or weakness.
  • New balance or gait difficulty.
  • Recurrent falls or near-falls.
  • Significant medication side effects.
  • Excessive daytime sleepiness.
  • Symptoms significantly disrupting sleep despite treatment.
  • RLS treatment that is no longer providing adequate control.
  • New symptoms after a medication was started or changed.

If the symptom meets organizational criteria for more urgent evaluation, follow the escalation protocol rather than waiting for routine neurology follow-up.

Suggested Talking Points:

Explaining RLS

"Restless legs syndrome causes an urge to move your legs, often with uncomfortable sensations. It usually becomes worse when you're sitting or lying down and tends to improve temporarily when you get up and move."

Discussing sleep

"RLS can interfere quite a bit with sleep. We want your healthcare team to know if it's regularly keeping you from falling asleep or waking you during the night."

Discussing iron

"Iron levels can affect restless legs symptoms even when someone isn't severely anemic. Your healthcare provider may check specific iron studies to decide whether iron treatment would be appropriate."

Discussing medication triggers

"Some medications used for other conditions can make restless legs symptoms worse. Don't stop any medication on your own, but let your healthcare team know if your symptoms changed after a medication was started or adjusted."

Discussing augmentation

"If your symptoms used to begin at night but now start in the afternoon, become more severe, or spread into your arms, that can sometimes happen with certain RLS medications. Your neurologist should know about that change."

Discussing OTC products

"Some over-the-counter allergy and sleep medications can worsen restless legs symptoms, so it's a good idea to review those products with your healthcare provider or pharmacist."

Discussing symptom changes

"Any new or noticeably different neurological symptom should be reported to your neurologist. If something is sudden or severe, we'll follow the appropriate urgent or emergency-care recommendations instead."

Suggested SMART Goal Examples

1. Symptom Tracking
"I will record the time my restless-leg symptoms begin and how long they last at least 3 days per week for the next 4 weeks."

2. Sleep Schedule
"I will go to bed and wake up within the same 30-minute window at least 5 days per week for the next 4 weeks."

3. Caffeine Reduction
If the patient reports caffeine-related worsening:
"I will reduce my caffeinated beverages from ___ per day to ___ per day for the next 2 weeks and track whether my symptoms improve."

4. Medication Adherence
"I will take my RLS medication exactly as prescribed for the next 30 days and report any side effects or changes in symptoms to my healthcare provider."

5. Neurology Follow-Up
"I will schedule and attend my recommended neurology appointment within the next ___ days."

6. Iron Testing
When already ordered by the provider:
"I will complete my ordered iron blood work by ___ and follow up with my healthcare provider regarding the results."

7. Physical Activity
"Following my healthcare provider's recommendations, I will complete ___ minutes of moderate physical activity ___ days per week for the next 4 weeks."

8. Evening Stretching
"I will complete 5–10 minutes of gentle leg stretching before bedtime at least 5 nights per week for the next 2 weeks and track whether it helps my symptoms."

9. Medication Review
"I will bring or provide an updated list of all prescription medications, OTC medications, and supplements to my next healthcare appointment."

10. Sleep Apnea Treatment
For a patient already prescribed PAP therapy:
"I will use my prescribed PAP device every night for the next 30 days and report any barriers to use to my healthcare team."

11. Augmentation Monitoring
For a patient taking a dopamine agonist:
"I will record what time my RLS symptoms begin each day for the next 2 weeks and report earlier, more intense, or spreading symptoms to my neurologist."

Sources:

⚠️ Medical Disclaimer

This resource is provided for educational and informational purposes only and is not intended to replace professional medical advice, diagnosis, or treatment. The information presented is general in nature and may not apply to every individual or health situation.

Individuals should consult their physician or other qualified healthcare professional for personalized medical advice, diagnosis, or treatment recommendations related to their specific health conditions and should not begin any new exercise program or change their diet or medications without consulting their healthcare professional.

Call 911 if you are experiencing a medical emergency.