I’ve always sensed that something wasn't quite right with my legs. As a teenager sharing a bed with my best friend, I remember her waking me up with laughter, exclaiming, “Lying next to you is like trying to sleep through an earthquake!” Fast forward to today, I’m 45, and my boyfriend echoes that same sentiment.

I suffer from Restless Legs Syndrome (RLS), a neurological disorder that affects approximately 14% of people across the globe, according to the Restless Legs Syndrome Foundation. Every single night, I experience an involuntary and intense urge to move my legs. The only thing that offers me temporary relief is getting up and walking – a quick fix that never lasts. I try lying down again, only for the symptom to return with a vengeance, keeping me awake for hours on end. By the time night falls, I’m left feeling frazzled and in tears, longing for the bliss of restful sleep.

Despite RLS being a recognized condition known to severely impact quality of life, my journey seeking help has been riddled with frustration. From my doctors, I encountered more skepticism than solutions. One dismissed it as a mental health issue, suggesting I seek therapy, while another obstinately declared that there was no remedy and prescribed sleeping pills that raise serious concerns over dependency.

This is not merely a personal struggle; it’s a family affliction. My mother and grandmother experienced similar symptoms, colloquially calling it "twitchy legs" and resignedly accepting it as an unavoidable misfortune. But for me, suffering this nearly every night felt unbearable. Was I destined to live with this for the rest of my life?

In my mid-20s, I desperately turned to online forums, connecting with fellow sufferers desperate for relief. Some suggested placing a bar of soap beneath the fitted sheet for its magnesium content, while others believed that lying with legs elevated against a wall for 15 minutes might help. My cousin found temporary relief from a vibrating device designed to soothe restless legs. Unfortunately, none of these remedies worked for me.

Then came a turning point: I switched to a new primary care doctor who genuinely listened. As I described my symptoms, the nightly leg tremors that robbed me of sleep, the empathy I felt from her was a refreshing change. She confirmed it was likely RLS, but alongside this revelation came the shocking diagnosis of type 1 diabetes, a condition that struck me at 27, later than most. The focus shifted to managing diabetes, leaving my RLS seemingly unaddressed.

Years rolled by with my primary care physician overlooking the RLS. Whenever I broached the topic, she quickly redirected our conversations back to my diabetes. My pleas for help were met with indifference, leading me to appeal to my endocrinologist. She advised cutting out caffeine from my routine, which did alleviate some of the RLS severity, but the frequency of episodes continued unabated.

In 2022, an ad caught my attention, promoting intravenous laser ablation – a procedure to improve blood flow in the legs. I underwent six months of treatments, during which I felt hope blossom as my legs seemed lighter. However, just within a year, my symptoms resurfaced relentlessly.

Stuck in a cycle of sleeplessness, I tracked my nighttime activities with my Apple Watch, logging between 5,000 to a staggering 20,000 steps pacing the hallway outside my bedroom. Though I eventually exhausted myself enough to fall asleep, frustration would often accompany me back to my bed, eyes brimming with tears.

During a tumultuous divorce, I began taking Zoloft to manage my anxiety. Unfortunately, my RLS escalated during this period, leading me to discover that the medication could heighten RLS symptoms due to increased serotonin levels. It took over six months for me to wean off Zoloft safely.

Determined to decode the mystery of my affliction, I began documenting my experience and consulting sleep medicine experts. Dr. Andrew R. Spector from Duke University School of Medicine, an authority on RLS, revealed that many continue to misinterpret the condition, often branding it as psychological. The root cause remains elusive, but genetic factors, iron deficiency, and lifestyle choices are among the suspects. The RLS Foundation posits that low dopamine levels may also be a contributing factor.

Dr. Spector walked me through a sensible treatment plan – something I yearned to hear. Among the first steps is eliminating substances like alcohol and caffeine that could exacerbate symptoms. Next, checking iron levels becomes vital, and medications like gabapentin or pregabalin may be prescribed to alleviate muscle discomfort.

However, it was the shocking revelation regarding dopamine agonists that left me stunned. For years, these drugs had been prescribed to RLS patients, but they could actually worsen symptoms long-term, spreading discomfort from legs to arms and torso. Thankfully, the American Academy of Sleep Medicine recently revised guidelines, advising against their use except in terminally ill patients.

While opioids are usually the last resort for those unresponsive to other treatments, Dr. John Winkelman has initiated a national registry to track their long-term efficacy at low doses. He has found that while some patients manage to lower their dosages over time, others require progressively higher doses for relief.

What ultimately brought me relief was a thorough evaluation of my iron levels by a sleep medicine specialist last year. This crucial step, overlooked for nearly two decades, revealed that RLS is tied intricately to brain iron levels rather than solely being a leg issue. The results indicated that iron supplements could help, and within weeks of starting them, I noticed a remarkable decrease in both severity and frequency of my symptoms – by nearly half!

Although there's still much to be done, I'm grateful for this newfound relief. I can't help but reflect on the countless hours lost to this condition – the missed opportunities for enjoyment, productivity, and quality family time.

Meeting fellow RLS sufferers has forged a remarkable connection; we share an understanding that transcends words. To some, RLS might sound frivolous, but for us, it's a very real struggle.

Despite the challenges of RLS, I still find a silver lining. I live with a relentless drive and ambition that some might call “restless.” I aim to transform my physical restlessness into a metaphor for resilience. To think beyond the twitching legs to a life navigated through dynamic energy and tenacity—that outlook gives me hope and comfort as I lie down each night, daring to dream of the tranquility of sleep.