Restless legs syndrome help

[Pitracer1979]

Hi there I ha e server restless arms and legs and it’s killing me, this most recent bout I haven’t slept for 4 days. Have anyone got any medication or cures

[Hidden]

Hi.

Presumably you’ve been to your doctor ?

[Madlegs1]

What medications and doses are you already on.

When did it get worse?

What do you think caused the change?

Get back to us, and we will have a better chance at helping out.

Cheers.

[Hidden]

Hi, there is no cure for RLS, but if you aren't already on medication it does exist.

Reply to Madlegs, we can help

[Eryl]

Some of us find sugar to be a trigger, so I avoid everything made with sugar, like chocolate, cakes, biscuits and deserts. I also avoid fruit juices.

[Pitracer1979]

Hi there,

I’m on riponirole. It got worse around a week ago when I stopped taking Codeine tablets.

I’ve been for 5 days without sleep.

I’ve had restless legs and arms for around 15 years

[Parminter in reply to Pitracer1979]

You are 'augmenting', Pitracer. The ropinirole is making the condition worse, it is common.

Click the link to augmentation on the top right of this page and learn about it.

There is no solution but to come off it slowly but surely, and switch to other medications.

The opioid was masking the augmentation.

If you can get an opioid it will help hugely with the tapering of the dopamine agonist.

Many of us here have been through this and come out the other side eventually. It is not easy but it can be done.

First, inform yourself in every way you can, then take the information to your doctor and ask for his help. It cannot be done alone, you need support.

[Pitracer1979]

Hi,

I’ve only just started on ropinirole, about 2 weeks now, yes the opioid was still masking any symptoms and now I’ve come off opioids all my severe symptoms have started again.

How long does ropinirole take to start being affective?

[Dogdoo]

Opiod withdrawal can cause an uptick in RLS symptoms.

[Pitracer1979 in reply to Dogdoo]

Only thing that takes RLS away is an opioid 😭

I’m stuffed really

[WideBody in reply to Pitracer1979]

So why stop if low dose opioids work?

[Pitracer1979]

I was addicted to opioids, I have been opioid free for 2 weeks

[involuntarydancer]

It's not entirely clear from your post whether you have always had rls or if it has come on only recently with the withdrawal from opioids.

Withdrawing from opioids frequently causes an onset/exacerbation in rls (whether or not the person withdrawing suffered from rls originally). In most cases it goes away when the withdrawal period is over - I'm not sure exactly how long this takes but I would expect a couple of weeks. In your case, if you already have rls, the exacerbation may be worse. However, it is possible that the ropinerole is also causing a worsening of your symptoms - this can happen even after only a short time on the drug although it is unusual.

Opioids are used in the treatment of rls for the very reason you record - they cause a cessation in symptoms. The other pharmaceutical treatments are: dopamine agonists such as ropinerole, pramipexole and rotigotine (a patch) - these are VERY risky medications and their negative effects are unfortunately not widely known or understood by most of the medical profession; alpha 2 delta ligands such as pregabalin and gabapentin (these work well for some but not all sufferers and have side effects which some find intolerable); opioids. Many rls sufferers are resigned to having to take a low dose opioid daily for their rls. As there is no cure, this is likely to be for a the lifetime of the sufferer.

There are a number of non-pharmaceutical treatments that work for at least some sufferers although typically they work less well when the rls is severe and widespread as yours is. A cup of coffee at the onset of symptoms can work through the adenosine receptors which are implicated in rls. A hot bath (ideally with epsom salts for the magnesium) followed by the application of very cold water to the affected areas can also be helpful. A series of gentle stretches can afford some relief at least for a while. Taking iron is helpful to at least 50% of sufferers. Magnesium supplements help many. Compression stockings work for quite a number of sufferers - up to a point. Increasing potassium rich foods helps some (potassium supplements can be dangerous). There are many who report that a clean diet (in various incarnations) is helpful. Reducing alcohol (red wine tends to be a trigger for me), sugar and nicotine can help (although there are some who find that chewing nicotine gum helps). There are lots of additional suggestions that crop up from time to time on this and other forums.