Restless arm syndrome

[Halfpint1234]

I have a uncontrollable urge to keep moving my shoulder the sensation is horrendous . Docs thought it was reastless arm syndrome but nothing they have tried is working .anyone else had this

[Joolsg]

I only had restless arms, hans, shoulder, back and face when I augmented on a dopamine agonist. Are you on any medications including OTC cough & cold meds?Have you had blood tests?

[Halfpint1234 in reply to Joolsg]

Ive had blood tests all ok had mri on spine all ok on clonazepan which reduces the sensation slightly , they have tried pregablin and quinine sulphate but neither have made any difference. I have today been referred to hospital so im desperate for an answer as my shoulder is constantly moving only time ok is at night when im asleep .

[Joolsg in reply to Halfpint1234]

Interesting. If you can sleep then it's not linked to RLS. RLS presents when at rest or trying to sleep.I would ask to see a neurologist as it sounds more like myoclonus dystonia.

The treatment for dystonia is clonazepam or anti eplileptics which also help those of us with RLS.

I hope you manage to get treatment which settles the tremors.

You might want to consider medical cannabis as well as it really helps neurological conditions.

Here's the link

drugscience.org.uk/project-...

[Hidden]

Hi, there is such a thing apparently as restless arm syndrome. but that doesn't mean you have that.

If it were then I guess the same medications that work for RLS should work.

Pregabalin, which is an anticonvulsant, doesn't necessarily work in all cases and even when it does you have to take it for at least 3 weeks to get full effect. Plus a sufficient dose.

Quinine sulphate, in my opinion is a joke! I wonder which dusty ancient tome your Dr got that one from?

In the days when the causes of RLS were a mystery, it used to get confused with night cramps and quinine was used for that.

There are a couple of tests that could be tried if your Dr is willing.

1) Take a dose of levodopa. This is known to be effective for RLS and can have effect within 15 minutes.,i.e. relieving the symptoms.

2) Take a dose of a sedating antihistamine. This makes RLS worse.

If these two have no effect then it's not RLS and presumably, not restless arm either.

Note that pregabalin can make myoclonus worse if it's that!

Another option depends on whether you're taking any other medications or not. And, in what they are. Some cause "akathisia" i.e. restlessness.

Overall. your best bet is to see a neurolgist

[ookla]

I have it. The only thing that makes it go away for me is opioids, either 5 mg oxycodone or 50 mg tramadol... 15 minutes, symptoms gone. The leg symptoms are bad, but you can rub them, walk around, roll around in bed, squeeze a pillow between your knees, etc. But the shoulder/arm symptoms, forget about it... there's nothing you can do to escape the suffering. I don't know what I'd do without my medication. I hope you find some relief - and if you do, please share it with the rest of us. Good luck.

[Goldy700]

I have had RLS for 50 years and developed restless back, shoulders in the past 2 years. I am so glad I discovered (medically prescribed ) vaping cannabis as I usually get the worse symptoms at 1 am in the morning. It is a blessing that I have something that takes away the symptoms, makes me sleepy and I get a decent night's sleep. I feel great the next day.

[Hidden]

I have restless arms and shoulders as well as legs and I’ve had it for months. The restless legs I’ve had for 32 years. I think it’s due to augmentation of ropinerole which I am trying to wean off. I just end up stretching my whole flipping body all night with it and it’s horrendous

[BBMBRB]

I get it in my arm but is exactly the same sensation as in my legs

[lanie136]

I have rls in both legs and arms. Arms just started about 10 years ago. Rls in legs started 70 years ago Been on 3 different meds but only got worse. Haven't been on meds for 15 years but think I need to now since I only sleep couple hours a night due to rls

[serengazer]

I have had almost full body RLS since childhood. It runs through my legs esp knees, abdomen, up my neck and down my shoulders and arms to fingers. It feels like worms or ants are squiggling all through my body. The neurologists have all said it is because the RLS presented when I was a toddler and has had time to progress through body while most develop RLS later in life so they are dead before it gets this encompassing! My symptoms were present before any medical treatment so not from drugs or augmentation. Anyone else with whole body RLS and how was it explained to you?