How many people in this forum suffer from Restless Legs Syndrome?

I saw a few posts about RLS, and Parkinsons's meds, so I know some of you do. Just wodering how prevalent it is with Raynaud's. I manage several online support groups for RLS, and thought maybe I could be of some help if anyone needs information. Support is so important as well as reputable information to help us through. I have severe RLS, but not Raynaud's. RLS is neurolgical, so there is no known connection now, but I did see quite a few posts with RLS in them. :)

9 Replies

  • I don't suffer it myself buy my dad has suffered it for years. I have told me few times now to ask for test for raynauds as he never had warm feet and he said his knees R constantly cold. And he as so bad pains in legs he goes bed with elec blanket on every day especially if hes been out any where and gets cold. But he stubburn and hates hospitals so he wont go. Said he takes enough tablets already and can't swollow them. Again why i say he needs to go get tests done.

  • Don't know if this will help, but I have severe cramping in my feet and lower legs from the Raynaunds. I have had RLS off and on in the past. I use 15 mg of Baclofen for the cramps and they have completely stopped. They may help with the RLS. The nice thing about it is I don't feel any negative side effects from it. They sometimes give it to people with MS. Hope it helps. Faith

  • Yes, I have both restless leg and raynauds. (And scleroderma) I wasn't aware there was a connection.

  • I have Scleroderma and when I have my monthly Iloprost infusion I always get RLS, just thought It was the increased blood flow in my legs, it disappears when the infusion stops.

  • I too have Raynauds and Scleroderma and I find that when I have the Iloprost infusions if I try to get to a higher level then I get restless legs - as soon as the level is turned back down then the restlessness stops - so I too think it is the increased blood flow. I'm glad that I don't suffer from it normally as it is really unsettling and you don't know where to put yourself to get comfortable

  • I also have severe restless legs, along with severe Raynauds and relatively mild scleroderma. I've been convinced for a while that there's a connection but my doctors have always disagreed... It's really interesting to hear that other people with Raynauds and scleroderma have the same problem.

    I didn't know that RLS is neurological, or that there was any treatment for it.

    My RLS started when I was about 12, and my Raynauds started when I was 40ish. The rheumatologist diagnosed scleroderma when I was 48 - I've had a slow build in symptoms but I wonder now whether the early onset of restless legs was an indication...

    I don't find my restless legs change with the iloporost infusions (I have them twice a year) but it can strike at pretty much any time, especially at night, when it prevents me going to sleep. It can be difficult to go to the cinema, too, as once it starts, it will continue until I can get up and walk around.

  • I have sufferedfrom restless legs since a teenager and was diagnosed in 2012 with diffuse scleroderma but suffered reynauds a few years prior to diagnosis

  • I've got RLS but have had a bad reaction to all the medications I have tried, at the last count about 20!, any suggestions please?

  • I do. I'm pretty sure that my Raynauds triggered a Bad bout of Rsl last night too. I went training (bare foot on mats- bad mistake!). This was like walking on upturned plugs, then later that night the RlS was really in my feet and lower legs. I've had both for about 20-25 years and I'm 39.

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