Restless legs and Ropinirole/Dopamine Agonists

[humanbean]

Since restless legs are a common problem mentioned on the forum I thought this might be of interest :

Title : Doctors didn't warn women of 'risky sex' drug urges

Link : bbc.co.uk/news/articles/cgk...

Ropinorole is a dopamine agonist, which means that dopamine levels will rise.

I have never been prescribed a dopamine agonist, but I have been prescribed a dopamine antagonist for gut problems. An antagonist is the opposite of an agonist. The effect on me was catastrophic and I only took 5 tablets in 3 days, and I would never willingly take any drug which affected my dopamine levels ever again.

When I had restless legs and regular leg cramps I can't remember ever telling a doctor about them. I just lived with it for decades. I'm glad that was the case now because it appears that prescribing drugs for the condition often causes side effects.

My mother had restless legs too and was prescribed quinine in her old age. That isn't safe either, but perhaps because of her age the doctor decided that giving her a mild poison wouldn't be a problem. *rolls eyes*

See the interactions, side effects, and warnings here :

bnf.nice.org.uk/drugs/quinine/

I discovered my own cure for my restless legs, and I have written about it before but can't find what I wrote. My cure involves nutrient supplements, which at sensible doses make me feel better, they don't change my behaviour in any dramatic or dangerous way. But then I think the NHS has to give patients drugs rather than nutrients because they are taught they are the cure for everything.

What I needed to do/take to get rid of my restless legs...

1) Optimise iron and ferritin and keep them as close to optimal as I could. I keep a box of iron tablets at home that I know I tolerate, and if I get restless legs or cramp (a very rare event for me these days) I take one tablet. If that doesn't have a useful effect within 5 minutes...

2) I take a combo product of magnesium glycinate, malate, and citrate. I've started taking this recently, and I take it every night.

3) If I'm still struggling I take a vitamin D3 tablet.

4) If that doesn't help and I'm still struggling I take a quarter dose of a potassium supplement. Full dose is four tablets a day, I just take one.

5) And if that doesn't work I'll try taking water with a little salt in it.

I've rarely had to go through this whole process because one or other of my supplements does the trick and relieves restless legs and cramp. And these days it happens very rarely anyway, now that my iron and ferritin are good, and I take a full dose magnesium product every night too.

[Staffsgirl]

Thanks for this useful information humanbean. I was offered medication for restless legs/ cramps many years ago. Thankfully I declined…have learned to live with it, like you, with similar staregies. Could I ask which iron supplement you take? I haven’t yet found one I’m happy with.

[humanbean in reply to Staffsgirl]

I take ferrous fumarate 210mg. It can be bought from pharmacies in the UK without prescription with a pharmacist's permission. I have to take iron tablets with food, although it doesn't have to be a lot of food.

[Staffsgirl in reply to humanbean]

Many thanks…but sadly this one doesn’t seem to agree with me.

[humanbean in reply to Staffsgirl]

If I had my time over again I would start supplementing with Three Arrows. It isn't tolerated by everyone, but I think tolerance is higher than for the ferrous fumarate 210mg.

Have you tried the Three Arrows?

[HowNowWhatNow in reply to humanbean]

It’s amazing - and I’ve tried them all and found all others (including Iron infusion s) eventually didn’t agree with me. 3 Arrows, however…

[Staffsgirl in reply to humanbean]

Not yet but will do. Thanks.

[Buddy195 Administrator]

Huge thanks for sharing humanbean 👍

[stiltzski]

My husband has Parkinson’s (& Lewy Body Dementia). Dopamine agonists are sadly often prescribed to treat Parkinson’s & the effects can be catastrophic: gambling away all the family money, sex addiction & complusive behaviours of many sorts. The stories I’ve heard are heartbreaking. Little if any warning seems to be given to the patient or carer by their neurologist but you only get to see one once a year if you’re lucky, which doesn’t help.

[humanbean in reply to stiltzski]

Since nutrients did helpful things for me, and also helps other people with thyroid diseases generally, is it common practice for people to try and optimise nutrients with Parkinson's and/or dementia?

I've decided in recent years that optimising nutrients should be step one in treating all chronic conditions. It wouldn't do any harm and may do a lot of good.

I remember being absolutely amazed several years ago when I came across some info on nutrients in the treatment of schizophrenia. I don't know anyone with the disease but given that it is a very serious and life-destroying condition it seems amazing that it isn't better known. And the [standard NHS] treatments can often cause movement disorders which are really painful.

pmc.ncbi.nlm.nih.gov/articl...

Edit : The link above may be of interest to somebody, but the recommended doses in the nutrient list are incredibly low. I would do my own research if I wanted to investigate nutrients for chronic disease.

[stiltzski in reply to humanbean]

It is now believed that Parkinson’s -.akong with many chronic illnesses - begins in the gut, so yes, nutrients are very, very important.

[greygoose]

Good lord! Thank god I don't trust doctors anyway!

[Regenallotment Ambassador]

Heard this on the radio this morning, it’s horrendous. Can’t believe what they’ve uncovered. How many lives and families destroyed. Beggars belief. Thanks for sharing and the nutrient info. Interesting reading.

[Watamu in reply to Regenallotment]

Yes, I too was listening to this story on radio 4 this morning, horrific, that poor girl.

[wisewoman108 in reply to Regenallotment]

Could you please let me know what programme it was on 🙏

[helvella in reply to wisewoman108]

Probably this one:

Woman's Hour

Businesswoman Sara Davies, Holiday without kids, Restless Leg Syndrome

Released On: 11 Mar 2025

Available for over a year

Women prescribed drugs for movement disorders such as Restless Leg Syndrome are not being warned by doctors about serious side effects which have turned them into sex and gambling addicts – according to a BBC investigation. These women say these drugs were so powerful that they changed their behaviour entirely and ruined their lives. BBC News Investigations correspondent Noel Titheradge joins Nuala, along with a woman we are calling Lucy who developed three serious addictions while on the drugs, and professor of neuropsychiatry at Cambridge University, Valerie Voon.

Presenter: Nuala McGovern

bbc.co.uk/sounds/play/m0028sww

missrees

[wisewoman108 in reply to helvella]

Thank you so much @helvella

[radd]

hb,

I read about this today too.

I haven’t taken these meds but have suffered RLS for years and have recently found whilst sitting putting something heavy on them stops them moving about.

Alternatively tyeing a belt or scarf tightly around my feet seems to keep my legs in place ( much to my husbands amusement 🤭).

[humanbean in reply to radd]

That almost sounds like you are punishing yourself!

[Regenallotment Ambassador in reply to radd]

We do this in iyengar yoga too. It’s strangely comforting rather like swaddling I guess.

[TiggerMe Ambassador in reply to radd]

Cripes Radd I'm now picturing you in a mermaid tail 🤣

[radd in reply to TiggerMe]

😁 🧜‍♀️

[Hectorsmum2]

There is a very good forum for restless legs in Health unlocked. I think the person on the radio posted there this morning.

[missrees]

Hello! I was given Ropinrole a couple of years ago - it was the worst thing that i've ever taken and it was a horrible experience coming off them - after only 8 months. I didn't experience any of those terrifying side effects, but it was given to me without any info on side effects. I should have known to ask more questions.

What I do find that helps me is T3 - as well as all the things that  humanbean mentions - the iron, vit d3, magnesium. Alcohol brings it on. Placing hands, feet in cold water or walking on a cold floor - that may have something to do with Grounding - but i'm not sure - i just know that it helps me.

I've also seen recently about the restriction of the feet - so tying a sock around the foot across the widest part. It works for some.

Was it on the Today programme?

[MedalMaker]

Thank you for this information humanbeam, it is always useful to know other people's viewpoints on these things.

I live in France, and members may be interested to know that I was prescribed acetylleucine tablets for bouts of vertigo that didn't respond to Epley Maneuver etc. I find it works exceedingly well for the vertigo, and also in respect of RLS which I discovered by chance, and later had it confirmed by researching acetylleucine online.

I have had RLS for yonks (I'm 81) and the acetylleucine seems to relieve the sensation rapidly. I have often wondered (but I haven't proved this) if my RLS is triggered by the position of my spine, sitting down and laying in bed. I have a medical bed primarily to stop gastric reflux, and at times the RLS has started after I have adjusted the bed in order to read for example. It would be interesting to know if other people have found this happens?

Luckily I seem to have experienced no side effects to the acetylleucine whatsoever .

I wish you the very best of good fortune in finding your place of comfort.

[Enuffisenuf]

Pernicious anaemia & hypothroid often go hand in hand, so it's worth getting B12 levels checked just incase.

My restless legs were down to PA, and stopped once I started injecting.