Restless legs .. anyone else have it?

[Emmamumto2]

Had restless legs for years. Weirdly better when im pregnant!
Has gotten so bad i want to stab myselt to create pain to distract.
I am on ropinerole 2mg. Is anyone else on this and found it helpful?

Have you tried magnesium ? Really helps me

Magnesium is great and I spray my legs with magnesium spray.

Another vote here for magnesium. I use the 3 in 1 version from nutrition geeks

Magnesium (tablet, not topical) and keeping well hydrated are my key tactics.

I take magnesium glycinate - good quality one, an hour before bed. It really helps after a few weeks of taking it. Slept better after a few days.

Yes to magnesium again. Also for some reason I find standing on cold floor tiles make mine go away 🤷🏻‍♀️

I used to get it really bad when I was on a very restricted diet to control another condition. My doctor told me to add a little bit of salt to every meal and it would go away. I tried it and it worked.

If you eat a normal diet it probably won't do anything but if you think you may not have enough salt in your diet it might be worth trying.

Yes, I've had this off and on since my teens and it was unbearable during pregnancy. Magnesium and iron supplements help a lot. I always know when my iron is getting low because my legs start up again.

A weighted gravity blanket really helps me

Wheras anything pressing on or restricting my legs makes it far worse.

It's so unpredictable from person to person. My DM's stops as soon as she lies down, but I have to wait for mine to completely go before I think of going to bed.

Magnesium works for me but if I’ve run out or it’s really bad a couple of paracetamol usually works!

Yes I was going to say magnesium spray but given you’re on medicine for the restless legs I’ll assume you’ve already tried it and it didn’t work!

I was recommended tonic water from a pharmacist and it really did help!

You have my sympathies!

I used to find walking around helped mine, but this doesn’t always work now, sadly.

I find that exposing the leg to the cold helps to ease RLS, and also some ankle/leg stretches.

Hi OP,

I imagine if you're on ropinerole you've probably tried all the standard approaches but worth asking, have you had your bloodwork done for iron/ferritin levels? RLS is linked to low brain iron and many specialists treat low ferritin much more aggressively than a GP would.

A lab may flag ferritin of 75 µg/L as “normal” but in RLS care that level is often treated as functionally low. Many clinicians aim for >100 µg/L (and some patients report benefit at 100–200+ µg/L). If you haven't already done so I would consider asking your doctor for ferritin and TSAT (transferritin saturation) tests. The Mayo Clinic and the RLS Foundation both recommend that if ferritin ≤75 µg/L and transferrin saturation (TSAT) <45% you should start iron therapy.

Has your doctor warned you about the possibility of augmentation if you stay on ropinerole too long?

(I'm not a doctor but I cared for my dad for many years, whose RLS was so bad it made him suicidal. I get it myself sometimes and it's torture.) Anyone who has to deal with this on a daily basis has all my sympathy - I really hope you find something that works for you. If you don't know it already, the Health Unlocked RLS forum has a shedload of tips and advice: healthunlocked.com/rlsuk

Thank you everyone, ive had this for years. Ive tried:
Magnesium tablets, magnesium topical creams, weighted blankets, walking, running, stretches, massages, distraction, opiates(which stop ot dead, but cant maintain that), tens machine, iorn tablets, iorn infusion but nothing so far has helped. The ripinerole helps but sometimes it still breaks through.
I am worried about augmentaion. My doctor hasnt spoken about it but through my research on rls and treatments i found it.
Ive had my bloodwork dond and im slightly low on iorn but nothing that would cause the severity. Im back and forth to the doctors but hoping now there is the 3 appointment rule i get refered on to somewhere. Thank yiu for all your sudgestions and comments

So sorry to hear this OP.

I have it, much more mildly than you by the sounds of things, and have no long term solutions. Mine is nighttime only.

But a couple of things which help me in the short term are (i) orgasm, which stops it straight away and allows me to sleep easily immediately after; (ii) a completely cold bed - sometimes I switch in the middle of the night; and (iii) an early night, going to sleep before it starts.

Thank you! I will try these and see how it goes as i havent explored those options.
In the winter i use heated wheat bags on my feet - they have to be burning hot - but that helps to distract my brain enough for me to fall asleep sometimes.
My legs start at around 3pm. No idea why. I do know caffine after 2pm makes it worse. So i try not to drink caffine past midday (which sometimes is hard with a 4 month old and a 2.5 year old! )
I am kind of masochistic and use pain as a distraction which isnt healthy but how ive always done it.

Came here to say exactly this!

@EricTheGardener that's really interesting about ferritin. Mine is currently 14 and my gastroenterologist seemed to think that was fine and I could take iron supplements if I wanted to but I probably didn't need to bother 😕 I have started them, for the umpteenth time, but it takes ages for my levels to improve (I have IBD).