Restless Legs Syndrome
Imagine finally reaching the end of a long, exhausting day.
You've finished all your work, cared for your family, and now you can look forward to restful sleep—the one thing that truly rejuvenates you.
You begin to relax and drift toward sleep when an unbearable sensation starts in your legs, sometimes in your arms.
You have to move, get out of bed, walk, stretch, use heat or ice, and try again.
Then it starts over.
One hour becomes two, then four, six, or even eight. Eventually, morning arrives.
This is what severe Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease, can be like.
It is a neurological condition characterized by painful sensations and an intense, restless urge to move, which typically worsens during rest and at night. This has been my immutable reality for over twenty years.
Living with RLS
RLS has affected far more than my nights. Chronic sleep disruption has caused daytime sleepiness, mental exhaustion, weakness in my limbs, headaches, poor memory, and difficulty maintaining a regular schedule.
Eventually, it contributed to my decision to resign from my job.
I had been told by doctors that I had RLS and that certain medications, including antidepressants, can aggravate it.
What I did not understand was that RLS exists on a spectrum from mild to severe. However, my symptoms were often treated as relatively minor.
It was through my research and personal experience that I began to truly understand the severity of the condition.
I have tried many treatments, often with limited benefit or difficult side effects.
Most nights, I rely on every non-medical strategy I can think of: stretching, hot baths, ice packs, heating pads, red-light treatment, walking, movement, and even showering my legs and arms with freezing water until they are numb.
The symptoms can continue for hours and sometimes well into the morning. I have also tried current first-line treatments such as gabapentin and pregabalin.
Neither improved my RLS, and both caused additional problems for me, including lethargy, a flatter mood, and digestive difficulties.
I have also tried opioids and benzodiazepines, which created their own complications, particularly around my already chronic insomnia.
RLS and mental health
The combination of RLS and my mental health condition has made recovery particularly difficult.
Research now describes a bidirectional relationship between RLS and mental health conditions such as depression and anxiety. That reflects my experience closely.
My RLS symptoms can make it extremely difficult to determine what is happening to my mental health.
I experience recurring depressive collapses that can leave me bedridden with anxiety and unable to think or function normally.
They generally last one to two weeks and are often accompanied by hypersomnia.
After repeated nights of almost no sleep, however, I cannot always tell whether I am experiencing another depressive episode, the consequences of sleep deprivation, or both.
This creates a challenging treatment dilemma. The medications I take for my depression exacerbate my RLS, while the RLS itself disrupts my sleep and can worsen my mental state.
When sleep itself becomes a disorder.
RLS is classified as a sleep disorder, but the problem is not simply difficulty falling asleep.
I also experience Periodic Limb Movements (PLM)—involuntary movements that can repeatedly fragment sleep.
In 2023, while undergoing work rehabilitation after a serious mental health crisis and dealing with lingering burnout symptoms, I was referred to the sleep clinic at Karolinska for an overnight sleep study.
The results finally provided objective evidence of what I had been experiencing: although I did sleep for several hours, the quality of that sleep was poor, primarily because of PLM.
These repeated movements can occur every 20–40 seconds and reduce sleep efficiency.
The sleep study gave me an explanation, but unfortunately not a solution.
Another unexpected part of my experience has been sleep-related eating.
During some nights of desperate attempts to sleep, I began eating without remembering doing so. I would wake to discover that I had eaten, or sometimes only partially become aware that I was eating, while still caught somewhere between dreaming and waking.
I told my psychiatrist, who carefully documented it, but it was not understood at the time that nocturnal eating is associated with RLS.
In my search for relief, Oxascand sometimes provided temporary help with my RLS and insomnia.
It is also listed as an option in Swedish RLS guidance. Unfortunately, I found that it significantly increased my sleep-eating.
It took me more than a decade to understand this connection.
Until then, I felt embarrassed and ashamed of something I could not fully explain.
RLS, insomnia, depression, and anxiety: a vicious circle
Insomnia is perhaps the most difficult part to separate from my RLS. Sometimes I cannot sleep until three or four in the morning without obvious RLS symptoms.
At other times, just as I become sleepy, the RLS begins and keeps me awake. There are also nights when I remain awake for hours without experiencing RLS at all.
During a depressive episode, the opposite can happen: I may sleep for hours and still wake exhausted.
For me, this creates a frustrating cycle:
RLS disrupts sleep.
Poor sleep affects my mental health.
Depression and anxiety affect my sleep.
Many psychiatric medications worsen RLS.
And treating RLS does not necessarily resolve the insomnia.
That is the puzzle I have been trying to solve for years.
I am not suggesting that my experience is the same as every person's experience with RLS.
Nor am I suggesting that personal experience replaces medical expertise.
I am sharing it because these conditions can overlap in ways that are easy to miss.
A person presenting with depression, anxiety, fatigue, insomnia, or poor concentration may have several interacting conditions rather than one isolated problem. And treating one condition without considering the others can sometimes create an entirely new set of difficulties.
Understanding the relationship between RLS, sleep, medication, and mental health has taken me years.
My search for a treatment approach that allows me to manage all these aspects together continues. Acknowledging the interaction of these conditions has been a crucial step, enabling me to recognize that symptoms I previously felt ashamed of were not merely a failure of willpower or character.
They constitute a complex and intricate scenario.
