Road to RLS Diagnosis: Overcoming Stigma

Having trouble sleeping? Tossing and turning all night searching for a comfortable position? Legs churning and yearning to move, only to never get quite comfortable?

When I was diagnosed with periodic limb movement disorder and restless legs syndrome (Willis-Ekbom disease), I knew the conditions ran in my family. My maternal grandmother dealt with RLS for years; even my mom had dealt with it for as long as I could remember. In college, I interned at an assisted living facility, and I still distinctly recall the RLS conversations while chatting with the senior ladies.

Men are impacted too

With all that exposure to the condition, I fell into the stereotype trap. My mind had created the assumption that only women deal with RLS. As a 25-year-old man, I assumed it couldn’t happen to me. Turns out that my thoughts were wrong about having the condition, but consistent with the statistics.

Women are more than twice as likely to have RLS than men, and the average onset is about age 45. What I failed to realize is that even young men are impacted, particularly those with a familial connection.¹

Periodic limb movement disorder and RLS

A sleep study showed that I indeed had periodic limb movement disorder. The movement throughout the night confirmed that. The self-reported sleep questionnaire and physician exam identified that I also had RLS. Turns out that some, not all, people with periodic limb movement disorder have RLS.

Always the overachiever with sleep disorders, it comes as no surprise that I have both periodic limb movement disorder and RLS. For those keeping track at home, that makes 4 disorders impacting sleep.

Importance of quality sleep specialist

My story also underscores the importance of finding a quality sleep specialist. What started off as reporting profound excessive daytime sleepiness turned into managing multiple lifelong sleep disorders. Like my narcolepsy nemesis, restless legs syndrome is a lifelong neurological condition with no known cure.

The relationship I have with my sleep specialist is one of the most important healthcare professional relationships I have. Openly discussing my concerns and symptoms paved the way for my diagnosis.

Prevalence of RLS and narcolepsy

Both RLS and narcolepsy are neurological in nature, yet the prevalence of RLS is higher, with 2 to 3 percent of adults having significant RLS symptoms.² Not by a little, but by a lot. Narcolepsy affects 3 million in a world population of 7.8 billion, so only .0003 percent.

RLS does not just impact adults, though. Research has shown that as much as 2 percent of children in the US also deal with RLS. That means that more children are affected by RLS than by diabetes and epilepsy.³

RLS causes and variations in severity

Low iron levels in the brain along with abnormal levels of dopamine have been suggested as keys to the disease process. Understanding the causes of RLS can serve as a roadmap to treatment strategies to discuss with your sleep specialist.

The condition may also go through periods of remission for days, weeks, months, and even years. Usually, the condition and symptom severity return after these remission periods. RLS symptoms may increase and worsen as people age.

Increasing awareness of sleep disorders

Ignorance of the prevalence of RLS delayed my appointment with the sleep doctor. The combined symptoms of my sleep disorder were impacting the quality of my sleep throughout young adulthood. I presented to the doctors with sleepiness, but effectively communicating my symptoms in language and terminology that could be understood took time.

There is a need for increased awareness about all sleep disorders, among the population as a whole and among the medical community. Don’t hesitate to speak out and share your journey: it could make a profound impact on someone else’s time to diagnosis. The World’s Strongest Person having N1, OSA, and RLS approved this message.