After misdiagnosis and relentless symptoms, I’ve felt the toll of RLS on my mental health. We need better care.

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After years of misdiagnosis and a series of tests that ruled out other possibilities, Nick C. was diagnosed with primary Restless Leg Syndrome. (Photo by Ryan Loew/PublicSource)

Compelling personal stories
told by the people living them.

Editor’s note, trigger warning: The essay discusses suicidal ideation. If you or someone you know are struggling with suicidal ideation, contact the National Suicide Prevention Lifeline at 800-273-TALK (8255), or message the Crisis Text Line at 741741. The programs provide free, confidential support 24/7. The author's full name is being withheld to protect his privacy.

“When I was younger, I was afraid to walk down the basement steps, for fear that I would fall between the empty spaces. And lately, I have been scared that there is nothing but empty space between where my life has been and where I want it to be.”

I first wrote those lyrics in the summer of 2017. My anxiety disorder was wreaking havoc on my life, and it was becoming increasingly difficult to maintain a life where my symptoms did not disrupt my existing relationships, work and education.

But I had no idea just how much those words would come to define virtually every aspect of my existence that following year, not by way of my anxiety disorder but through the onset of a functional neurological disorder.

In the fall of 2019, after years of misdiagnosis and a series of tests that ruled out other possibilities, my neurologist diagnosed me with primary Restless Leg Syndrome (RLS). RLS is a progressive sensory/motor neurological disorder characterized by incredibly uncomfortable/painful sensations and symptoms, which primarily occur in the legs and result in an urge to move those legs. Primary RLS is distinct from secondary RLS in that my RLS is chronic and not caused by other identifiable factors such as medication, low iron or kidney failure.

As of late, my neurologist thinks it is likely that I also have Fibromyalgia (FMS), a neurological disorder characterized by chronic pain and fatigue. Studies show that about a third of people with FMS also have RLS, but we are still exploring this possibility.

The exact root causes of RLS are unknown, but research suggests a link between factors like genetics and childhood abuse and the development of functional neurological disorders like RLS. I grew up in an emotionally and physically abusive home, where I was exposed to significant, frequent trauma. This fact is complex for me because I also have very fond memories from my childhood. My parents sacrificed a great many things for me to stay fed, clothed and educated, but I likely would not have to deal with RLS had I not been abused.

For those lucky enough to not have primary RLS, it is impossible for me to tell you how debilitating it can be or how awful it can feel. A common refrain I have heard from fellow people with moderate to severe primary RLS is, “I would cut off my own legs with a hacksaw if it would make this stop for good.” And if doing so really was a long-term solution, I would grab me a hacksaw and have at it. Because it really can be that bad.

Primary RLS tends to be worse in the later afternoon and evenings, but my RLS also tends to flare up earlier in the day. As such, my symptoms can be relentless. They are with me nearly every minute of every day, with fluctuations in intensity.  RLS is also designated as a sleep disorder, and symptoms often wake me up after I manage to fall asleep. Even sleep is not an escape.

I hope that in sharing my story, I can shine light on how very real symptoms are too often dismissed, even by medical and mental health professionals. It is crucial that patients like me are treated seriously and that doctors and mental health providers work together to give support that can improve and save lives.

The consequences of years of misdiagnosis

My diagnosis did not come easy.

For the first several years, I was typically told one of two things by psychiatrists, doctors, specialists and other medical practitioners: 1) it is “just anxiety” or 2) it is just “in your head.” But my symptoms were not “in my head.” They are the result of functional issues in my brain and are very real.

Sadly, this was far from the first time that medical professionals ignored my pain.

We straddled the poverty line growing up, and there were times when we used the emergency room like a doctor’s office when we did not have a copay for a doctor’s visit. The ER cannot turn you away. I remember that the doctors in the ER seemed to treat us differently, often annoyed that we were “back again.” They rarely listened to us, which was in and of itself emotionally destructive.

I had two particularly painful and life-threatening experiences at the ER. One happened when I was 12 and my appendix ruptured. The other was when I was 15 and needed serious surgery after I was screaming of pain but wasn’t believed. It’s important to state that these were the experiences of a white man, which is terrifying to consider given research showing that doctors tend to ignore the pain of women (especially women of color).

Likewise, the “it’s just anxiety” misdiagnosis was actively harmful because it led to a variety of treatments that made my RLS worse. While the exact root causes of primary RLS are unknown, low dopamine is a key factor. Medications that affect dopamine levels, including  antidepressants, antipsychotics and even common sedatives like Benadryl, make RLS worse, significantly so.

I was prescribed, or told to take, all the above medications for varying lengths of time. And as my symptoms got worse, I was again told one of two things by medical professionals: 1) the symptoms I was experiencing were just temporary side effects of the medication and/or 2) my feeling that my symptoms were worse was just “in my head.”

One psychiatrist told me that I needed to “man up” and stick with the antidepressants, only after he insulted my intelligence for most of our session. It was on my 29th birthday in early 2018, and it was not the last time I would be emotionally devastated after leaving a doctor’s appointment.

Taking antidepressants would make my legs convulse, and an injection of Benadryl at a hospital once made me check myself into a residential crisis facility. I literally could not stop walking for several hours because the injection caused an  irresistible urge to move my legs, and I was horrified that it would happen again. Because of the loss of autonomy that comes with RLS, I often feel swallowed up by a body that does not function like it used to. Each day is a reminder of that loss.

Worse still, I developed a physical dependency on Ativan because of a prescription from a former psychiatrist. As a muscle relaxer, Ativan worked to calm my muscles and nervous system, which eased RLS symptoms. But it’s just a temporary fix.

My former psychiatrist prescribed me a high dose of Ativan to be taken twice a day for nearly a year and a half. I had no idea that long-term Ativan use could result in unintentional dependency, but it did. And so, while simultaneously dealing with RLS,  and the anxiety and depression caused by dealing with it, I had to slowly taper off Ativan, all while working full time and financially supporting my family. The withdrawal from coming off long-term Benzodiazepine use is akin to coming off heroin, as I was told by a counselor at crisis RESOLVE who withdrew from both.

And so, for six unrelenting months, I felt like I was dying. I had never felt worse in my life, which was almost impressive given how bad I already felt from RLS. It felt as though my skin was on fire, all while having perpetual flu-like symptoms and extreme bouts of restlessness. The experience has given me even greater degrees of love and respect for anyone who deals with substance abuse, whether they are able to win that fight or not.

My negative experiences with medication over these past few years have led to a fear of medication, which makes seeking out prescription-based treatments difficult. This fear is further complicated by the fact that research suggests that traditional RLS medications like dopamine agonists tend to make RLS worse in the long-run. And sadly, I did not respond well to other drugs like the anticonvulsant Gabapentin.

My mental health has been profoundly impacted by dealing with RLS, an unintentional dependency and the trauma of most medical professionals ignoring me these past three years. There are periods when I think about suicide as often as I think about what I should make for lunch. And there have been six distinct times that suicide was an option that I strongly considered carrying out, times where I was more scared of my relentless symptoms than scared of being dead. But each time I was able to access professional and personal support that pulled me back from making such a final decision.

My fear extends beyond just the relentlessness of my symptoms. It is the fear of falling back into poverty after I have done everything in my power, through the immense support of others, to finally escape. Like other people who grew up in poverty, I am still in a position where my income does not just support me but struggling loved ones who need the help because of their own poverty and/or chronic health issues.

If RLS ever inhibits my ability to work in the long-term, I would no longer be able to support myself and my family. And that thought terrifies and demoralizes me.

Coping with RLS

My entire life has become a series of coping exercises, all to prevent myself from making a final decision that I cannot take back, and to lead a life that is as normal as it can be with my disorder.

While there are periods where I think about suicide often, I do everything I possibly can to not act on those thoughts, and I have become an expert in coping to stay alive. And I do everything I can to make sure my friends and loved ones do not feel overwhelmed by my struggles, something I was not good at doing when this first started in early 2018.

Over the past three years, in addition to ongoing therapy, I have completed two intensive outpatient programs at Western Psychiatric, checked myself into resolve CRISIS’s residential facility on four separate occasions, called resolve CRISIS’s 24/7 hotline countless times, took three months of  medical leave this summer and committed to virtually everything that my team of doctors and mental health professionals have recommended.

The Covid-19 pandemic took away Nick C.'s opportunity to swim, so he started going on several mile long walks each day. Low-impact, regular exercise is crucial for RLS symptom management, he writes, and also help manage anxiety and depression. (Photo by Ryan Loew/PublicSource)

There is no single answer on how to cope with a chronic disorder and the resulting suicidal ideation that can occur because of living with symptoms that can be truly relentless. Coping is sort of a division of labor.

Pre-pandemic, I would swim for about 30 minutes every day. Since the pandemic has taken away my opportunity to swim, I adapted and started going on several mile long walks each day. Low-impact, regular exercise is not just crucial for RLS symptom management but does wonders for anxiety and depression reduction. Likewise, my diet has radically changed to accommodate dietary restrictions resulting from my having RLS, with healthier eating also having a positive impact on my mood.

I also exercise what is called “opposite action” every single day, as I learned to do via my intensive outpatient programs.

Opposite action entails doing the things you normally enjoy doing when you do not want to do them, like getting out of bed, going out into the world, and spending time with friends (virtually these days). Opposite action is a learned skill and gets easier with practice.

Also important is my staying actively engaged with substantive distractions. Activities that require cognitive effort such as side projects outside of work, making and performing music and playing video games have been instrumental in keeping me distracted from my symptoms. Staying busy means staying alive.

More recently, I started doing regimens of deep breathing for 20 to 30 minutes each day, often accompanied by music. It took me a while to practice deep breathing because the last thing I want to do is sit with my body and my symptoms. But focusing on the music, not my body, helps. Deep breathing helps me manage my anxiety, an important tool given that stress and anxiety make RLS worse.

I manage the emotional toll of my condition and resulting suicidal thinking with my therapist. Being able to vent to a therapist who actually listens to me has been life saving. I put the heft of the emotional lifting on my therapist, not my loved ones. We need to surround ourselves with supportive friends to deal with chronic illness but also understand that we have a responsibility to not overwhelm them.

When my coping skills and therapy sessions are not enough, I call resolve Crisis Services. They have a hotline that is open 24/7. And when a phone call is not enough, I check myself into resolve’s residential program, for those times where I need significant support to help me not do anything final.

Moving forward

I am luckier than most in that I have an incredibly supportive boss, coworkers and employer and an even more supportive network of friends. And I have health insurance and good income. Without these supports, the reality that any final decision would destroy the lives of my loved ones and a desire to be, make better and live in this world, I would not be here. And I want to be here, in ways words cannot describe.

I am generally in a much better mental space than I was when this all started, but I hope that I find an effective treatment that brings significant relief. I am currently working with my neurologist to try low-dose opioids for long-term RLS management. The medication has been shown to be effective for RLS patients who do not respond well to traditional RLS medications. I was connected to my current neurologist via the Restless Leg Syndrome Foundation; their support has shown me that life can be better with RLS.

"No matter how relentless symptoms can feel, I must remain hopeful that my life will someday be closer to where I would like it to be," writes Nick C. on the impact of Restless Leg Syndrome. (Photo by Ryan Loew/PublicSource)

Tragically, I have found through an online support group that my journey with RLS is not unique. So many of us are misdiagnosed, mistreated and unheard. And given that those with RLS are three times more likely to self-harm or die by suicide as the result of dealing with this disorder, the current state of education around RLS is unacceptable.

Psychiatrists, doctors and even neurologists need to be better educated on RLS so that patients exhibiting the unique symptoms associated with a motor disorder like RLS can be referred to an expert in neurology. This bare minimum could save lives.

These disorders also need more research funding, so scientists can work towards a cure. And if we had a single payer healthcare system and universal basic income, I could take leave as needed without having to work full time while trying to treat a debilitating neurological disorder.

RLS patients not only struggle with relentless symptoms. We struggle with talking about our symptoms because doing so is triggering, as was writing this essay. We struggle with being validated in the most basic of senses. We struggle with whether we can work or not, the loss that comes from stepping away from a life you have built, and the loss of bodily autonomy. We struggle with watching the lives of others pass us by, and how our lives can seem to stay stuck in place.

But there are better days, and I live for those. I am so very lucky that I have received the support I have; otherwise I would not be here to write this essay. No matter how relentless symptoms can feel, I must remain hopeful that my life will someday be closer to where I would like it to be, and continued support, coping and new treatments will help me get it there.

Nick C. is a Pittsburgh native and local researcher. To support RLS research, please consider donating to the Restless Leg Syndrome Foundation. Nick can be reached at nickwithrls@gmail.com.

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