Does anyone else experience restlessness in arms and whole body?

[NancyAshworth]

I started with just my legs being restless. Now I experience restlessness not just in my legs but in my upper body especially my arms. It starts about mid afternoon and the evenings are ruined because of this. I take Requip starting around 8pm with 2mg of Requip.

[Madlegs1]

Check out Augmentation.

See pinned post below.

[Elffindoe]

As Madlegs suggests, this is augmentation and it is caused by the ropinirole.

The best option for dealing with this is

1) slowly reduce and then stop taking the ropinirole.

2) read up about iron therapy for RLS.

3) identfy anything that may be making your RLS worse and if possible eliminate it. There are many medications that mnake RLS worse.

4) Consider replacing the ropinirole with an alpha 2 delta ligand, i.e. either gabapentin, pregabalin or gabapentin enacarbil.

If you read thge pinned posts on here and a few of the many posts that mention augmentation then you'll get a better idea how to deal with it.

[Catlady4921]

I am in exactly the same position, Ropinerole and Sinemet used to control the RLSbut thanks to the brilliant advice here I am in the process of weaning myself off first the Ropinerole and then the Sinemet . It is a very hard journey which for me does involve the whole body ( Augmentation) but having read all the superb advice here I am determined to succeed . Good luck

[Joolsg]

Yep. It's inevitable with requip. As others have advised, it's augmentation.Reduce by 0.25mg every 3 weeks and you may need an opioid to deal with the withdrawal symptoms.

[RLSucks]

Absolutely. It makes me so angry when I read the "qualifying list of symptoms of RLS" and it in doesn't include arms, diaphragm, chest, in addition to legs. My symptoms are always in my upper body.

[Elffindoe in reply to RLSucks]

For the sake of other readers.

The accepted validated diagnostic criteria for RLS devised by the IRLSSG only mention symptoms in the legs.

This is probably because everybody with RLS gets symptoms in the legs. Otherwise it's not restless legs.

Not everybody, in the normal course of events, gets any symptoms elsewhere.

There are also qualifiers to the criteria e.g. that although it may occur in other parts of the body, it will have first started in the legs.

What is very significant to note is whether symptoms other than just in the legs occurs before any treatment is taken or after treatment has been commenced.

Particularly, if symtoms are previously confined to the legs only and then after taking a medication they spread to other parts of the body, then this is augmentation.

This is very common when the medication is a dopaminergic agent, i.e. levodopa or a dopamine agonist.

Augmentation in this case is caused by the medication and it can be relieved by reducing or stopping the medication.

HENCE

If anybody says they have symptoms elswhere than the legs then it's important to know if they're taking medication or not.

I'm afraid that many doctors who have prescribed a dopamine agonist don't warn about augmentation and don't recognise it when it happens. Many people who experience it then think that augmentation is a "normal" progression of RLS. It isn't!

They can then end up for years suffering augmentation unnecessarily.

You say you always experience symptoms in your upper body.

Are you taking a dopamjne agonist?

[RLSucks in reply to Elffindoe]

No, I take 1 mg of suboxone daily. Works like a charm for me.

[Elffindoe in reply to RLSucks]

That's great.

However, for other readers, IF somebody is suffering symptoms in the upper body and they're taking a dopamine agopnist then they need to know about augmentation.

That's the point I'm making.

I'm glad it's not a problem for you.

[MumofSam]

I found this as I was slowly weaning off Tramadol, which I’d been taking for over 3 years, initially for sciatica. After a lifetime of RLS just in my legs, suddenly I had it in my left arm, base of my spine and neck. I thought it was just a reaction to withdrawal from Tramadol and would settle down eventually. After 9 months of sheer hell after finally being Tramadol free, including insomnia, and with no sign of any of these new symptoms abating, I went back to my GP and started taking Pregabalin. It works too a certain extent, but my RLS has still spread through my body thanks to Tramadol. There needs to be more awareness that it’s not just legs but anywhere in your body that can be affected, and also more awareness of the dangers of Tramadol.

[Zedz]

yes, and if it has progressed it is augmentation. got off those meds and don't have daytime rls anymore

[Insomniak]

Hi Nancy, I am a long term Requip user having increased to 4mg of Requip-Modutab Pro Rel daily which I take at 5:30pm (+/- 1 hour) - I find the timing very important. About 4-5 years ago I found that this dose was no longer preventing me having RLS symptoms in the evening. Like you I can get the crawling sensation in my upper body as well as my legs, although my personal favourite (Not!) is when I get it in just one leg but not the other - I hate that sensation. My neurologist recommended not increasing the Requip dose any further but rather adding Lyrica (pregablin) to the mix. Initially I took 50 mg of Lyrica per day which has increased to 150mg and stayed at that level for the last 2-3 years. I regard my RLS as manageable and if I take care of other factors like stress, alcohol, caffeine, phone screen time I can go without symptoms for weeks at a time. I wish you all the best in your personal pursuit of a workable solution.

[Woody4]

Yes Nancy I have ‘restlessness’ in my arms as much or more than my legs and both are equally irritating.

[alport45]

My situation does not fit with the augmentation scenario. The restlessness extended to my torso, arms and head just a couple of weeks into taking Requip.

[sleeplessinKY]

Nancy it sounds like argumentation to me. Happens with requip. I have been on it for at least 20 years but only increased my dose a few years ago from .25 to .5 mg. So much research has surfaced about long term side effects that I am currently switching to gabapentin and tapering off requip. It's VERY hard to stop taking it. Many sleepless nights through trial and error adding gabapentin is helping.