Restless Legs Syndrome (RLS) Discussion Board

Hello RLS people,
This is my first post, although I've had RLS all my life. It runs in my family and we called it "jumpy legs" before we heard there was a name for it. My life (like many of yours) has to accommodate the worst aspects of this horrid disease. I recently came down with Covid and took Paxlovid for 5 days. For RLS, I've been on Ropininrole since 2014, gradually increasing the dosage as it lost effectiveness. There had been some indications of augmentation for the past year (symptoms starting earlier in the day, not being able to sleep all night, having to get up and walk, "restless upper body syndrome" attacks), but this past week something drastic has happened. RLS is with me 24/7 and there is no relief - at best, I'm getting a couple of hours total sleep a night - RLS sensations all over my body, falling asleep standing up, but can't sit down for any length of time, can't see or think straight - basically, I'm a RLS wreck. It's like a switch has been turned on. I was wondering if anyone else has had any possible side effects from Paxlovid or Covid? Or has the augmentation just decided to attack full force? Thanks for any information you may have.

Welcome Moonstars. I haven't heard of Plaxovid affecting rls. Others may know different. The same for covid. However you will see as you read through posts that there are many triggers that affect us all differently and unexpectedly.

However, you have been on ropinerole a long time and at increasing doses. You don't say what your dosage is now but it should not be more than 1mg daily as per the rls experts. I'm with you on the falling asleep standing up. I've been there and once fell backwards hitting my head on the dishwasher. The dent is still there some years later. That was when I was taking ropinerole. At present I use cocodamol and Pregabalin (lyrica) with pretty good success.

Initially my ropinerole was prescribed up to 4mg daily and I ended up at 5mg daily and was augmented. I spent a long time weaning off it and it was the best things I've ever done.
Augmentation is a hellish nightmare. I'd suggest you need to consider coming off the ropinerole. Is your doctor rls educated. The link in my signature gives good rls information.

I had Covid and was given a series of three infusions of Remdesivir as opposed to the oral Plaxovid, I also have ashtma and my doctor wanted me to go the infusion route rather than the slower oral route. At the time, monoclonal antibodies were reserved for those at highest risk (diabetics, cancer patients, etc).

I don't believe that the treatment had any effect on my RLS.

To Moonstars,
Please see a neurologist asap if you have not already.