I finally found a neurologist who also has RLS and has tried all the things I've tried. She totally "gets" me and that's been amazing!

As I discussed my symptoms with her and the things I tried, and she went through her list of things to try, I realized I had in fact tried every possible option - even oxycodone. Yes, I had a standing backup prescription of oxy for 6 years. I was very careful with it... until I wasn't, and then I found myself using it for headaches, and to get to sleep. That was when i knew I needed to try something else.

I was taking 1 MG extended release Ropinerole combined with 1MG Pramipexole (Mirapex) 3 times a day at 2pm, 6 pm, and 10pm. I was getting RLS in my shoulders and arms and even hands... hence the site name of restless LIMBS because all my limbs were affected!

So my neurologist put me on Lyrica and recommended I ween off of either Pram or Ropinerole, and start taking Lyrica to see if it was a viable substitute. I don't recall her giving me any guidance or guidance on HOW to wean off of either one, but I honestly can't remember. I would definitely recommend bringing someone close to you along with you when you meet with your neurologist, so they can help you piece the conversation together afterwards.

Lyrica has been quite effective, although it leaves me with a bit of a buzz (which I am totally fine with). I have weaned off the Ropinerole but apparently I did it the wrong way. I didn't go cold turkey but I extended the time between doses over the course of only a few days. I've since learned that should have happened over the course of several weeks, not days!

But it's this lack of specific guidance that I'm very concerned about.