My experience with RLS

Hi I am new to this community. I have suffered with RLS for many years. Not sleeping well because my legs feel squirmy and jumpy. Hot baths help sometimes. I am taking carbidopa levodopa two pills at night. It has been wonderful. But if I don't take them at 7:30 pm the legs start and takes longer for the medicine to work. No side affects to report so far. It's been two years. I still suffer during car or plane trips. To the point that I cry.

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  • Hello and welcome. You are in a great spot to learn about your condition and hopefully get some relief.

    Have you looked into Iron? Many of us here are getting good benefit from gentle iron taken on an empty stomach in the evening. Try searching for it in the search bar at the top right of the screen. Wise to take a search for augmentation too.

    Have you tried any other meds? There are many that can be used and if you have a sympathetic and understanding Dr at the least (s)he could sort you out drug wise for plane trips.

    If you are not adverse to breaking the law (no victim no crime!!!) or live in a more enlightened part of the world you could always try cannabis, although I think might not be wise to use it on a plane :) It can be quite strain specific but there is great relief to be had there too.

    Anyway you'll learn loads here and get great support too.

    Take care.

  • Thank you. I've tried cannabis. The thc is much higher now compared when I use to use. With that I have panic attacks. Sadly. So far the medicine I take helps at night. But sometimes it's during the day. I will definitely try iron supplement. Thank you

  • Hi and welcome.

    As Raffs suggests, look up Augmentation to check you're not suffering from that and follow up on the iron ( get your serum ferritin checked - it should be above 75, preferably above 100),

    I also tried cannabis while withdrawing from dopamine Agonists ( I was suffering Augmentation) and like you experienced horrible panic attacks (skunk is not the same mellow cannabis as in the 60's and 70's).

    Also try magnesium threonate with a vitamin B complex - it helps.

  • Thank you so much. I have a doctor's appointment soon and I will ask to get checked for iron. I'll look up the other. I'm starting to take magnesium. You are so right about the cannabis.

  • Hi, just a thought. Several people here have got relief on a journey by wearing compression stockings/socks. Hope that might help a little.

  • Oh that's a good idea. Thank you. Neil. I never thought of that

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