Restless Nights: Navigating RLS Amidst COVID Chaos

Marilyn Meier has had RLS for many years. She is a mother of two, a grandmother of four, a world traveler and a birder who loves hosting her friends and family. She recently shared her experience of having RLS and COVID-19 with RLS Foundation staff. Though there is little research studying this correlation, she is sharing her story with other members of the community who may have had a similar experience.

I had “jumpy legs” starting in my 30s, but I did not have an official diagnosis of restless legs syndrome (RLS) until I was in my 50s. I had great faith in my family doctor, but quite frankly, very little was known at that time about RLS – even for specialists like neurologists. I took no medications to manage my symptoms for years until things progressed to the need for pramipexole (Mirapex). Mirapex certainly helped … initially. However, as my symptoms grew worse, my doctor increased the dosage. Once again, it helped. The bad news, however, was that I developed a side effect known as augmentation.* Concurrently, studies were being published connecting augmentation to Mirapex and other medications known as dopamine agonists.

I began seeing a neurologist who trained at Mayo Clinic and was familiar with RLS and augmentation. She prescribed gabapentin and slowly reduced the amount of Mirapex. When the augmentation persisted, she started me on oxycodone in addition to the other medications. This was life-changing! My symptoms improved significantly. Although I still experience breakthrough symptoms, for the most part my RLS is under control.

I have been fortunate that my severe RLS symptoms do not usually occur during the night when I am asleep. More often, they intensify in the afternoon (if I try to rest and start to doze off) and after 9:00 pm before I go to bed. When I experience these episodes, often daily, I call it an “attack.” The symptoms usually subside after about one or two hours. I walk, march in place, or go to the kitchen to find something to nibble on like grapes, cereal or peanuts – anything that might distract me from the maddening sensations in my legs! There have been rare occasions over the years when the attack has lasted as long as 30-plus hours without a wink of sleep. Does this sound familiar to any of you?

I was scheduled to have my right hip replaced this January – my ninth joint surgery. I mention this so that you understand that, by now, I know the drill and did not have any overriding anxiety about the surgery. However, I was experiencing some congestion the day before the surgery and, after consulting with the pre-op nurses at the hospital, I was advised to get a COVID test at my clinic. The lab technician told me that my results would probably not be reported until later that night, but in time for my scheduled surgery. I went to bed at 11:30 pm, fully expecting to get a good night’s sleep. But within half an hour, I was driven out of bed with my jumpy legs – I could not understand! This was not the normal pattern of my RLS. I headed downstairs so as not to disturb my husband, and that was the beginning of my endless night.

I desperately tried my usual coping strategies to disrupt the attack. I walked around, turned on the TV for distraction, marched behind my desk chair, moaned and groaned, but nothing helped. At 6:00 am, I looked again at my online patient portal and there it was – a positive COVID result! My COVID test meant no surgery – I was completely bummed! Not only did I have COVID, but I had suffered a severe attack of RLS. My legs were still going crazy, and they did not let up until 2:00 pm that afternoon, 14 hours after they kicked in. As you can imagine, I was exhausted and beyond frustrated. I questioned: Did COVID play a role in my RLS attack? After all, I rarely have such a severe attack, so it was a departure from any former pattern. I have no idea if COVID triggered my restless legs attack, and I will never know for sure if the two were connected.

Because I had COVID, my surgical team followed its protocol to wait six weeks after the diagnosis to reschedule surgery. In a few days, I will finally be getting my hip replacement. And am I ever ready!

Before closing, I would like to thank the RLS Foundation for the incredible work that they do. I became familiar with them during COVID and attended some of the online support group sessions. I read the NightWalkersmagazine from cover to cover, learning more and more about this disease. I have attended their fabulous webinars, which have enabled me to have more informed conversations with my neurologist. The information that these specialists provide is excellent. Thanks to the RLS Foundation, I can live more successfully with this disease!

*Medical Editor’s Note: Augmentation is a worsening of RLS symptoms after getting initial relief (often months or even years) from medication that treats RLS. These are typically dopamine related drugs (carbidopa/levodopa, pramipexole, ropinirole or rotigotine) but the non-dopamine drug, tramadol may also cause augmentation. Increasing the dose of the drug will provide temporary relief but with time, will worsen the augmentation process. For further information, see the RLS Foundation’s handout on RLS Augmentation.