Hi Nanci: I've had RLS since 2010, but it was only diagnosed in 2020. My symptoms and the descriptions of RLS I read didn't match. My RLS presents as an unbearable achy pain. I used to not twitch at all--I do now, but not as a major feature. According to my sleep neurologist (an expert treating RLS) many medications do make RLS worse. (One reasons to seek treatment from an expert on RLS---this is not information our primary care doctors seem to have). RLS originates from something neurologically amiss in the brain. I like to think of it like having a seizure--nothing my behavior can control (entirely). I spent years trying to figure out "cause and effect" and then moved on and realized I'm blameless--and, unfortunately, also helpless (without my RLS expert doctor.) Currently, my symptoms are very well controlled. I even have many nights without any symptoms, at all. Previously, I had 1 to 4 episodes every night. Maybe I had a night without symptoms every 3-4 months as an oddity. I am now a long way from 2020, when I developed insomnia and cried for hours and realized death would be an improvement. #1 I take Rx buprenorphine every night. #2. I use a massager on my legs when symptoms start. Before the medication, the massager was a mainstay and helpful. I would wake, feel the RLS pain start, use the massager, which "confused" my nerves and turned off the pain (until 2020, when it stopped being effective). #3 I got an insurance (medicare) paid for Niadra--device for RLS made by the Noctrix Company. This is a relatively new option. It is a pair of bands, worn on both legs below the knee that works kind of like a TENS unit--you turn it on and it makes a brain distracting "buzzing" that turns off the RLS symptoms. Unlike the massager, which needs to be hand-held, the Niadra can be used as I fall back to sleep. And I do. Unfortunately, it is not yet available in all states. Also, it doesn't help when my symptoms are most horribly severe, but it is very helpful for mild to moderately severe. BTW, my RLS is mostly on the side and back of my left thigh and sometimes both thighs and up through my buttocks. I've grown to understand it can present any place, including arms. Like you, I have had late afternoon and early evening RLS (sitting in a chair or lying on the sofa, trying to watch TV). The Niadra has been really great, dissolving the pain during these times. Although it may not be an immediate option for you, it is something to know about and keep in mind. There is no cure for RLS. It's about lifetime management and we need all the tools available to manage it! Google the Noctrix company. My advice is to advocate for yourself by first of all finding and making an appointment with a RLS specialist. A real expert. There is a RLS Foundation, so you could ask for recommendations through them. Google their website. My doctor does telemedicine in Ohio, Florida and Michigan, if you live in any of those states. I don't, but I travel to Ohio to connect with him. I've read in this forum that there is wonderful an expert at Mayo who also prescribes buprenorphine. Stanford (in California) has experts. Mass General in Boston has a number. Dr Early in Baltimore at Johns Hopkins (but he will only see Maryland residents). It takes time to get any appointment with someone "good" but you don't want someone pushing Requip on you (because it leads to augmentation--a worsening of symptoms). I was in crisis when I was motivated to find a good doctor and it took 3 months for my first appointment. A miserable 3 months. Please keep us updated!
Thank you for these things to research and perhaps try out. The Niadra device sounds interesting. I know that on a bad night, I can put a compression sleeve on my leg and it often helps. Fortunately, replacing Losartan with Lisinopril has helped considerably in reducing my RLS.
I live in New Mexico, home to about 2M people total in the entire state. I live in Santa Fe, so one of the larger towns but there is a shortage of doctors period, and no specialists in restless legs syndrome. The closest that I know of is at the Barrows Institute in Phoenix, AZ. The doctor there will do telemedicine but only after seeing me in person. If I’m ever forced to have back surgery (my back is problematical), Barrows is where I plan to go and then I would also get a consultation with the RLS specialist.
I’m off to to fin out what I can about Niadra. Thank you again for your comment and suggestions!