The Troubling News With Restless Legs Syndrome
New guidelines warn that medications used to treat RLS are harmful
I've had a problem with my legs that's difficult to describe. Even though my body and mind are exhausted, I have this unrelenting urge to move around in the evenings. My legs twitch, shake, jerk, shimmy. It evolved from annoying to life-altering as the sensations limited my ability to fall and stay asleep.
Over the years, the frequency of symptoms increased from once or twice a month to once or twice a week, and eventually, nearly every night. Anyone who shares a bed with me jokes it's like sleeping with earthquake aftershocks. The movement in my body is completely out of my control, and the only thing that helps is to get up and walk around, though as soon as I lie back down the symptoms kick up again.
There are serious problems for patients, like me, experiencing symptoms of a confusing condition, Restless Legs Syndrome (RLS). The first is that many people, including some doctors, don't take it seriously because it's not considered life-threatening. Another issue is that, because of the lack of awareness and treatment protocol, even in the medical community, many patients suffer needlessly for months, years, or even a lifetime.
The RLS community is now digesting forthcoming guidelines from the American Academy of Sleep Medicine (AASM), which shed light on a class of drugs that actually makes symptoms worse. For this elusive condition, navigating the latest information can make all the difference in improving quality of life.
Because of the lack of awareness and treatment protocol, even in the medical community, many patients suffer needlessly for months, years, or even a lifetime.
If you are enduring nebulous twitching, aching, or otherwise "restless" sensations in your legs that are worse in the evening and interrupt your sleep, you may be part of the 7-8% of the adult population who lives with RLS. Andrew R. Spector, M.D., associate professor of neurology at Duke University School of Medicine, authored a new book on the topic, "Navigating Life with Restless Legs Syndrome." He reports that patients use different descriptors for their symptoms, but that ultimately the syndrome was named "restless" because many use that word. The impact on sleep and overall mental health can be terrible.
I've often wondered why it took me decades to find effective relief for my RLS symptoms. I spoke with a fellow sufferer, Rebecca Morrison, 53, who explained that she only knew what to call her symptoms because her mom and aunts also had it. "I don't remember the medical community thinking RLS was a real thing," she added.
Reasoning that there was no cure for a condition doctors weren't taking seriously, Morrison did online research then verified with her primary care physician that magnesium and B6 supplements may help. Indeed her symptoms were then minimized, though during perimenopause her RLS flared up again. She added, "Only in the past few years have I heard more people talking about this, so I've started asking questions."
New Guidelines
If there has ever been a time to pay attention to RLS, it is now, as the American Academy of Sleep Medicine (AASM) guidelines are about to be released offering new information for the first time in over 12 years. In the draft guidelines, three front-line drugs commonly prescribed to treat RLS are no longer indicated as they have proven to make symptoms worse. The problematic class of drugs are called dopamine agonists — pramipexole, ropinirole and rotigotine (brand names like Mirapex, Requip and Neupro).
For some patients taking dopamine agonist drugs over long periods of time, symptoms spread to the arms, torso and other parts of the body.
Dr. John Winkelman, M.D., who is Massachusetts General Hospital's chief of the Sleep Disorders Clinical Research Program, explains that many patients taking this class of drugs for RLS experienced immediate relief of symptoms in a "honeymoon period" followed by steady rates of augmentation in the brain. As a result, for some patients taking dopamine agonist drugs over long periods of time, symptoms spread to the arms, torso and other parts of the body.
I also spoke with Mollie Price, 69, who has had a challenging journey. She said that 25 years ago when her symptoms became severe, she made an appointment with a neurologist who prescribed what was then called "a new miracle drug" for RLS — pramipexole. She reported that over more than two decades taking this dopamine agonist, her symptoms got worse, even spreading to her hands and arms, so her doctor continuously increased her dose.
She then was prescribed other medications, including sleep aids, which exacerbated both the intensity and frequency of her RLS. She described RLS as a lonely condition, explaining, "people can't really appreciate what it feels like, so it tends to be brushed aside." She has clocked over 20,000 steps some days without leaving her house because she can't settle her body.
More than a year ago, she decided to take control of her health, attending a virtual seminar hosted by the Restless Legs Syndrome Foundation. There she learned that dopamine agonists were harmful. Her journey to wean from the medication has been arduous, but she has managed with the help of a low-level dose of an opioid. While controversial, low-dose opioids are now in the recommended protocol according to the new guidelines for patients with severe RLS who are trying to wean off dopamine agonists. Price hopes to be fully off the dopamine agonist by the end of this year.
Take Care Quitting Medications
For patients who have been taking dopamine agonists, there could be a drawn-out process to break chemical dependency while managing withdrawal symptoms. Spector said, "no one has an easy time coming off these drugs." He pointed to DAWS, dopamine agonist withdrawal symptoms, which can include anxiety, depression, insomnia, exacerbation of RLS symptoms and even suicidal thoughts.
Careful supervision from a doctor is critical when halting these drugs. Andy Berkowski, M.D., founder of ReLACS Health, acts as vice chair of the AASM Guidelines Task Force. He recommended that patients who want to stop "should find a clinician knowledgeable enough to devise a long-term strategy for tapering off dopamine agonists … generally using replacement treatments from the list of recommended options." He suggested finding a neurologist or other specialist who is trained in sleep medicine.
Doctors who are presented with a laundry list of issues will (justly) start with the most life-threatening before addressing RLS.
Berkowski expects the new AASM guidelines to have a big impact on the medical community because of the rigor of the testing, but the new guidelines also create no room for interpretation on whether dopamine agonists should be used at all — they are no longer recommended at any level of treatment for RLS due to the problematic issues discovered.
For those who feel they have not been taken seriously enough by a primary care physician, Berkowski recommended making the purpose of your visit about RLS exclusively. He reasoned that doctors who are presented with a laundry list of issues will (justly) start with the most life-threatening before addressing RLS.
Berkowski recommended assessing iron levels, noting that iron supplements or, in some cases, iron infusions, are more effective than other supplements like B6 and magnesium, which have not been proven effective (and thus not mentioned in the new guidelines). He also recommended patients bring a copy of the draft AASM guidelines to their doctor's appointment for a fact-based discussion.
For those in the RLS community, living with symptoms is a significant burden to carry. Learning more about the syndrome, including the emerging guidelines, has created a renewed sense of empowerment for me. If nothing else, it helps to know I'm not alone and this isn't all just in my head as I try to improve my quality of life.
