My legs felt like they had soda bubbles fizzing inside them

RLS Diagnosis

Dr. Claudia TrenkwalderCommented by Prof. Claudia Trenkwalder,
University of Göttingen, Kassel, Germany

Despite being so common and causing such distress to those people affected by the condition, Restless Legs Syndrome (RLS) often remains undiagnosed in primary care and, when diagnosed, is often not treated appropriately.1 It has been shown that only approximately 13% of patients with RLS symptoms consulting a primary care physician are accurately diagnosed.1 RLS patients are commonly misdiagnosed with sleep disorders, poor circulation, depression, arthritis and back or spinal injuries.1


RLS is often undiagnosed

RLS is often undiagnosed - diagram
The following data are taken from the REST Study's cohort of patients with RLS symptoms considered likely to warrant treatment, on the grounds of symptoms occurring at least twice weekly with at least a moderate negative impact on quality of life.

  • Among 551 such RLS sufferers, roughly two-thirds (357, or 64.8%) reported that within the preceding year, they had consulted a physician about their symptoms
  • Yet only a small proportion (46 of the 551, or 12.9%) had received a diagnosis of RLS
  • In conclusion: although a large number of persons are affected by RLS symptoms, only a far smaller number receive appropriate treatment.

Adapted from Hening W et al. Impact, diagnosis and treatment of Restless Legs Syndrome in a primary care population: REST (RLS epidemiology, symptoms and treatment) primary care study. Sleep Med 2004; 5(3): 237-246.

 

An expert on RLS diagnosis

Dr. Garcia–BorregueroCommented by Prof. Jacques Montplaisir
Sleep Disorders Centre, Université de Montreal School of Medicine, Canada

 

Restless Legs Syndrome (RLS) Diagnostic Criteria2

Four essential criteria have been widely accepted for RLS diagnosis and may help overcome misdiagnosis:

  1. An urge to move the legs, usually accompanied or caused by uncomfortable and unpleasant sensations in the legs
  2. Symptoms begin to worsen during periods of rest or inactivity such as lying or sitting
  3. Symptoms are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues
  4. Symptoms are worse in the evening or night

If a patient's symptoms match all of these four criteria, there is strong suspicion of RLS warranting further investigation.

 
 

“One of the main challenges that face primary care physicians is achieving correct diagnosis in a very busy environment where symptoms such as limb pain, tiredness or low mood could be attributed to a number of conditions. Unfortunately, patients with RLS symptoms often find it very difficult to express the weird sensations in their legs or do not mention them at all when they visit their family doctor. This can lead to inaccurate diagnosis, ineffective treatment and therefore symptoms persisting or even worsening. With an increasing understanding of RLS and awareness of the four diagnostic criteria, it may be possible to overcome such misdiagnosis.”

Dr. Julian SpinksCommented by Dr. Julian Spinks
General Practitioner, United Kingdom

 

Dialogue for diagnosis

Please view this animation of a patient-doctor dialogue to better understand the challenges RLS patients and their doctors face when diagnosing the condition.

References

  1. Hening W et al. Impact, diagnosis and treatment of Restless Legs Syndrome in a primary care population: REST (RLS epidemiology, symptoms and treatment) primary care study. Sleep Med 2004; 5(3): 237–246.
  2. Allen RP et al. Restless Legs Syndrome: diagnostic criteria, special considerations, and epidemiology – A report from the Restless Legs Syndrome diagnosis and epidemiology workshop at the National Institutes of Health. Sleep Med 2003; 4(2): 101–119.