1. < Brain & Nervous System
Profile picture for tess21

Is anyone experiencing RLS?

Posted by tess21 @tess21, May 16, 2024

I used to have it as a child, whilst in the car usually. I’d say my legs are jumpy. It’s in my mums family. The last couple of years, I’m 71 now, I’ve had it most night. I might fall asleep then wake up with it. I have to get up and walk around. Having my legs on a level with my body is terrible! Anyone have any ideas how to help get rid of, or at least ease the problem?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for roslyn2314
roslyn2314 | @roslyn2314 | Jul 10, 2024
In reply to @celia16 "I haven’t had it since childhood, but it seems like I've read there are meds that..." + (show)
Profile picture for celia16 @celia16

I haven’t had it since childhood, but it seems like I've read there are meds that treat it, i hope someone who is familiar with them will chime in.

Jump to this post

Sifrole is my magic drug for RSL
28 years on it and if I miss a tablet mid afternoon there is no sleep to be had. Various strengths available and Some are ER which I think means they are absorbed over time.. Well worth a try

REPLY
1 reply
Profile picture for tess21
tess21 | @tess21 | Jul 10, 2024
In reply to @roslyn2314 "Sifrole is my magic drug for RSL 28 years on it and if I miss a..." + (show)
Profile picture for roslyn2314 @roslyn2314

Sifrole is my magic drug for RSL
28 years on it and if I miss a tablet mid afternoon there is no sleep to be had. Various strengths available and Some are ER which I think means they are absorbed over time.. Well worth a try

Jump to this post

Thank you! I’ll look into it! I found some meds for it I ropinerole upset my bowels and seem to effect the peristalsis.

REPLY
Profile picture for margaret10
margaret10 | @margaret10 | Jul 10, 2024

I've had RLS for several years and it has disrupted my sleep so much that I end up sleeping through the next morning. Sometimes I feel like I'm going to jump out of my skin. Walking helps RLS temporarily, but my neuropathy (burning feet) can't tolerate much walking. Recently had "iron studies" done, and it was found that my Iron % saturation and my ferritin are so low that iron infusions are recommended. Iron deficient anemia causes RLS. Will give the infusions a try, though I'm skittish about it, thanks to a bad experience with IvIg infusions.

REPLY
1 reply
Profile picture for tess21
tess21 | @tess21 | Jul 10, 2024
In reply to @margaret10 "I've had RLS for several years and it has disrupted my sleep so much that I..." + (show)
Profile picture for margaret10 @margaret10

I've had RLS for several years and it has disrupted my sleep so much that I end up sleeping through the next morning. Sometimes I feel like I'm going to jump out of my skin. Walking helps RLS temporarily, but my neuropathy (burning feet) can't tolerate much walking. Recently had "iron studies" done, and it was found that my Iron % saturation and my ferritin are so low that iron infusions are recommended. Iron deficient anemia causes RLS. Will give the infusions a try, though I'm skittish about it, thanks to a bad experience with IvIg infusions.

Jump to this post

Hi Margaret! I had an iron infusion in Jun 2023 and I was good for a couple of months. The only thing is I’ve read that although iron can be brought up higher by infusions the brain doesn’t always absorb the same. It’s worked for other people though so perhaps you could give it a go! You really should do something about the anaemia. That can cause other problems, and you must be feeling awful!

REPLY
1 reply
Profile picture for tess21
tess21 | @tess21 | Jul 10, 2024
In reply to @roslyn2314 "Sifrole is amazing for RSL." + (show)
Profile picture for roslyn2314 @roslyn2314

Sifrole is amazing for RSL.

Jump to this post

Hi Roslyn, I checked and you’re taking pramipexole which I have tried. It’s a Parkinsons drug, and it had a bad effect on my bowels. Thank you for the advice though!

REPLY
Profile picture for margaret10
margaret10 | @margaret10 | Jul 10, 2024
In reply to @tess21 "Hi Margaret! I had an iron infusion in Jun 2023 and I was good for a..." + (show)
Profile picture for tess21 @tess21

Hi Margaret! I had an iron infusion in Jun 2023 and I was good for a couple of months. The only thing is I’ve read that although iron can be brought up higher by infusions the brain doesn’t always absorb the same. It’s worked for other people though so perhaps you could give it a go! You really should do something about the anaemia. That can cause other problems, and you must be feeling awful!

Jump to this post

Thanks tess21!

REPLY
Profile picture for tess21
tess21 | @tess21 | Jul 11, 2024
In reply to @illinijohn54 "I have dealt with RLS for many years (almost 70). I seem to have found a..." + (show)
Profile picture for illinijohn54 @illinijohn54

I have dealt with RLS for many years (almost 70). I seem to have found a solution in taking two .125mg Pramipexole pills at 6:00 each night, as well as before boarding any flights (where I’ve also had RLS occur). I’ve tried creams and warm showers and other meds, but this works for me. Key is to take it early (I have my Apple Watch alarm set each night) and to keep a supply available. When I forget because we went out somewhere and I don’t have any pills, I can still get an RLS incident and then take a couple of pills, but they may not be effective for 1.5-3 hours.

Good luck! It has been a huge relief for me to find what for about 6 months now has been a largely reliable solution.

Jump to this post

Thank you for this! Interesting that you take the medication hours before you go to bed!

REPLY
Profile picture for freidbs
freidbs | @freidbs | Sep 21, 2025

Hello I've had rls for about 10 years, currently being treated with clonazepam 2x2mg per day. This is after all first line treatment failed. Does anyone else have this condition (not twitching legs more like I'm plugged into a wall socket) I would like to change to diazepam as I think the clonazapam is having side effects such as actual muscle stiffness and does not calm me down or relax muscles anymore. It does keep the distressing symptoms of rls at bay. Has anyone been diagnosed with this and have experience with changing from a very strong clonazepam to a weaker but I think more relaxing alternative benzo for this? Or absolutely cannot be any other family of medicine as the side effects are just awful (dopamine agonists were the worst) thanks in advance

REPLY
5 replies
Profile picture for dbamos1945
dbamos1945 | @dbamos1945 | Sep 21, 2025
In reply to @freidbs "Hello I've had rls for about 10 years, currently being treated with clonazepam 2x2mg per day...." + (show)
Profile picture for freidbs @freidbs

Hello I've had rls for about 10 years, currently being treated with clonazepam 2x2mg per day. This is after all first line treatment failed. Does anyone else have this condition (not twitching legs more like I'm plugged into a wall socket) I would like to change to diazepam as I think the clonazapam is having side effects such as actual muscle stiffness and does not calm me down or relax muscles anymore. It does keep the distressing symptoms of rls at bay. Has anyone been diagnosed with this and have experience with changing from a very strong clonazepam to a weaker but I think more relaxing alternative benzo for this? Or absolutely cannot be any other family of medicine as the side effects are just awful (dopamine agonists were the worst) thanks in advance

Jump to this post

@freidbs: yea, most of what you share is “me”! I am taking Lexapro 10mg for cancer side-effects, but also have had restless leg syndrome for most of my life (last bd “80”)! I have another strange side effect from Lexapro and never told anyone… I have hallucinations in the morning when I first awake. My eyes see what isn’t there. It alarmed me at first, but now I realize what is happening and just wait until it fades away! However, if you tell anyone I will deny everything!
… Anonymous

REPLY
Please sign in or register to post a reply.