1. < Brain & Nervous System

Is anyone experiencing RLS?

Posted by tess21 @tess21, May 16 9:58pm

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?

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roslyn2314 | @roslyn2314 | Jul 10 5:13pm
In reply to @celia16 "I haven’t had it since childhood, but it seems like I've read there are meds that..." + (show)
@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.

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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

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1 reply
tess21 | @tess21 | Jul 10 5:23pm
In reply to @roslyn2314 "Sifrole is my magic drug for RSL 28 years on it and if I miss a..." + (show)
@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.

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margaret10 | @margaret10 | Jul 10 5:49pm

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.

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1 reply
tess21 | @tess21 | Jul 10 5:58pm
In reply to @margaret10 "I've had RLS for several years and it has disrupted my sleep so much that I..." + (show)
@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!

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1 reply
tess21 | @tess21 | Jul 10 6:01pm
In reply to @roslyn2314 "Sifrole is amazing for RSL." + (show)
@roslyn2314

Sifrole is amazing for RSL.

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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!

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margaret10 | @margaret10 | Jul 10 6:02pm
In reply to @tess21 "Hi Margaret! I had an iron infusion in Jun 2023 and I was good for a..." + (show)
@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!

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Thanks tess21!

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tess21 | @tess21 | Jul 11 11:20pm
In reply to @illinijohn54 "I have dealt with RLS for many years (almost 70). I seem to have found a..." + (show)
@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.

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

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