Restless Legs Syndrome (RLS) Discussion Board

https://clinicaltrials.gov/ct2/show/NCT04698343

The study is in California (Dr. B is running it) and in Dublin, Ohio. It looks like it involves some kind of wrap on your leg below the knee that gives little shocks to your leg. If you live near one of the study places, it might be worth a look.

This study is being done in a large number of locations, not just California and Dublin, OH. I asked about it and they turned me down because they said that my RLS was too severe. But it only takes a short time to ask and they were very prompt with their reply.

Dr B suggested I try it at my last visit. I washed out, lol - too severe. But I really did feel that for someone with moderate to mild symptoms it would have helped. It even did help some (I was on a trip with I had it - trying to decrease meds while in strange places, flying on a plane), but I had to decrease much more slowly than I was supposed to - took me an extra week or two but I did decrease by about 30%, which is pretty awesome.

I have tried multiple devices now - from TENS to this unit. I honestly swear (I have female genitalia) that the thing that helps get me back to sleep with mild/mild-moderate symptoms is a vibrator nestled in between my legs against my vulva. Not a buzzy one, but a low, slow, rumbly one. My guess is that it increases blood flow. I can get back to sleep in about 5 minutes and usually get another whole sleep cycle in.

Do most RLS sufferers feel symptoms below the knee? My faulty brain signals all go into my thighs.

Mine are always below the knee but occasionally in my arms.

Stainless wrote: ↑

Tue Aug 23, 2022 3:25 pm

Do most RLS sufferers feel symptoms below the knee? My faulty brain signals all go into my thighs.

My understanding is that is the case. Mine used to be like that but now I'm more like you. It is in my buttocks and lower back now. Sometimes my mid back.

Do most RLS sufferers feel symptoms below the knee?

I've read that most WED/RLS people feel it below the knee, but it seems to me from people's descriptions I've read over the years that we feel it all over our legs and arms, and other places besides. I've also heard that the sensations don't appear to arise in joints, but mine are always worse around the joints, especially the knees - generally the top of the knee joint.

Not a buzzy one, but a low, slow, rumbly one. My guess is that it increases blood flow. I can get back to sleep in about 5 minutes and usually get another whole sleep cycle in.

I use a vibrating pillow crunched between my thighs. It's buzzy, not low rumbly, but I suspect low rumbly would be better. Nevertheless, it works as long as the symptoms are mild, and I've often used it instead of a pill.

Mine is in back of the knee, but I also have knee arthritis so I don't know if there is a correlation between arthritis and RLS at least for me. It does seem to be worse in the one knee with the arthritis that is considerably worse than the other knee.

My RLS symptoms were always in my hands. Except once when I put a TENS unit on my hands the symptoms disappeared in my hands and started up in my feet!