I've read posts where some of you have mentioned having symptoms in your arms. I've begun having problems in my upper back...feels like my skin is "crawling " and then the muscles tense up and begin to really hurt. Just wondering if anyone else has had this wonderful experience, or if I now have a new ailment!
Thanks for any input!
Patmac
Hi Patmac,
To answer your question: if there were, yours is definitely not one of them!
What you describe sounds awful. I can imagine it will easily lead to a stabbing headache.
And, no, fortunately I haven't had this experience. I do hope you will not get it gain!
Anything that may have been a trigger???
Thanks for answering, Lotte! Glad to hear you have not had this......the only thing I can think of that might have triggered this was a car ride that was about five hours round trip (but with stops along the way). It's probably just another part of getting old......which is not for sissies!
Take care,
Patmac
Touche'. Yes crawling along with pins and needles type. These were the symptoms of my RLS when it decided to move past my legs and drift into the rest of my body.
Totally different symptoms to the RLS I experience in my feet and legs. And no, there are no stupid questions, just this stupid disease.
A lot of people suffer all over body RLS.
Hi patmac,
I presume you are still on ropinirole? You were going to taper off?
When on ropinirole, I augmented and, as a result, RLS moved first to my arms, then my back and eventually my face. The feeling was exactly how you describe. In my face, it was like a constant tic.
All dis appeared after I got off ropinirole.
Seriously think you are augmenting on ropinirole. Look it up on here and you'll see what others experienced and how they got off ropinirole.
As Elisse says, you can get RLS in other parts of the body, even if you're not augmenting on ropinirole.
Take care
First of all there is actually a silly question - its when my wife asks me do I want to make love 
, mind you she rarely asks 
Yeah I get it all over. For most of my life it was just my legs however this past 5 years or so it is in my back and arms too and in fact a lot of time my back and arms are demented and my legs aren't so bad. Its terrible. I keep hoping against hope that it isn't RLS and is some other thing that can be treated.
Are you takng a Dopamine drug? You could be augmenting and need to come off it.
I do get arm and back symptoms sometimes so yes, I'm afraid it can happen. I don't find it painful, just very unpleasant in the same way as the legs part is impossible to describe but those who have the same find it simple to understand.
But there are of course lots of other reasons for pain as you describe and a long car journet could easily be one of them.
If you are taking Ropinorole or similar though i would also consider it could be an augmentation effect and if that seems possible then ask to speak to a dr who knows about this ( if in the UK that may be tricky! though someone told me about a dr in Newcastle who had a special interest. I couldn't see anything about seeing people outwith her geographical area though,
I get the symptoms in my hands and arms. Didn't start until about a year ago. Prior to that it was just in my legs which was bad enough. At least when the symptoms get really bad in my legs, standing relieves it. But there is absolutely nothing I can do to relieve the symptoms in my hands and arms except to flail and run them. Maybe if I stood on my head that would relieve the symptoms. But don't think so. Until the symptoms dissipate I have to put up with them. What a life we live when we have rls
Maybe it's fibromyalgia (FM). RLS is often comorbid with FM and various types of neuropathy, e.g. peripheral neuropathy, diabetic neuropathy.
I get it in my hands and shaking them doesn't help. Believe it or not, that's when I take 2 of the Hylands Restful Legs and it goes away and I fall asleep. I know it sounds crazy but it works for me.
Hello to all!
I don't know if this one reply will go to everyone, but hope so. Thanks so much for your advice and support! I am still on Ropinerol until I see Dr. Earley in September......I've only been taking it for a year; does augmentation start that soon?
To Grammie12......sometimes the Hylands helps me also......I've often wondered if taking Hylands every four hours or so routinely (whether the RLS is acting up or not) would be beneficial.....to nip it in the "butt" as a former coworker used to say!😜
I think the pain in my back was from the muscles.....they seemed to go into spasm and felt like a board on either side of my spine.
Annnnnyway.......thanks again!
Patmac
Augmentation can start at a few weeks or months from taking a dopamine med. Good luck with seeing Dr, Early.
Hi Patmac. I was on ropinirole. And in hindsight I think I augmented after 3-4 months. Didn't realise it until 4-5 months later, though. Fortunately for me the rls stayed in my legs. But I had it all day, except between about 9 and 12 AM.
I hope you'll find a good solution too soon and get rid of at least the upper back problems.
Keep us posted.
What did you take when you came off Ropinipole? I am at that stage now. I have been up all night and my legs are still going. I am taking 1mg which I have learnt from this amazing site, is the maximum I should ever take. It is just not working.
My doc gave me gabapentin; starting with 100mg and increasing to 200 mg after a week if 100mg wasn't enough.
Continued....it the send by accident.
When I reduced ropinirole from 0,75mg to 0,50 mg, rls already got quite a bit worse, which didn't subside after a week. Codeine 20mg plus 500-1000 mg paracetamol didn't do much if anything at all. Reading lots of posts on this site I decided to NOT slowly reduce further but stop at once, as I was pacing most of the night anyway and not able to rest/ sit quietly during the day. Went to my GP to ask for Tramadol for the withdrawal period.
In sum, I now take 200mg gabapentin (no idea what that contributes) and 50mg of Tramadol. Both in evening at about 8-9PM.
The result: no rls at night if I behave well. If I either do too much (>c. 2 hrs walking or cycling) or too little ( virtually no xycling, walking or other low-med intensity activity/sport) I have mild rls episodes at night that I can 'walk out' in 5-20min. Or overrule with intense brain activity.
Thought I'd give you a bit more background,as everyone if different.
Hope something like this works for you too
Thank you so much for all that extremely valuable information. I had taken Pramipexole for 12 years without any problems & then it stopped being effective so my Dr. doubled it to 4x0.88 mg & of course augmentation set in. At that time I had not discovered this site so both myself and my Dr. were not aware that this would happen. In July I reduced the pramipexole and introduced Ropinipole but now I knew all about augmentation. As I said the Ropinipole is useless and I need to get off. After the last time I think I will do the same as you and try to get off quicker rather than draw it out.
Isn't Tramadol addictive though? How are you finding the Gaberpentin? Again thank you for your support- I have had this curse all my life and thought I was alone.
I stopped ropinirole cold and stayed awake the entire night. Ropinirole caused me lower back pain, sometimes spasms, and some shooting pain in my feet on occasion, as well as some augmentation. I switched to the Neupro Patch, 2mg, 24hr. My sleep has improved, less muscle aches, still some sharp pain in feet as well as some neuropathy in feet. On ropinirole I could sleep only 4 to 6 hrs a night, I now sleep 8 hrs and can nap in the daytime, which was impossible on ropinirole. I have considered a visit to Dr Earley at John Hopkins to see if I could benefit from iron infusions because my doctor refuses to try this although I have taken 325 mg twice daily for 6 months. Certain foods seem to aggravate my RLS especially any that dilate the blood vessels like red wine, grapes, watermelon.
Hi Patmac,
My RLS actually began in my arms when I was about 18, mildly at first, gradually worsening over time and gradually including my legs. Full-blown, full body RLS came with pregnancy in my early 20s, and has never gone. Arms, hands, shoulders, elbows, knees, feet. Life has been a living hell. I didn't know what was wrong with me, I certainly had no idea that others had this awful disorder too, until about 23 years ago - my lightbulb moment - when i read my symptoms in a magazine. I'm 68 now and have just about had enough. I've been on a marvellous opioid for 15 years but I seem to be augmenting now.
RLS in the arms feels like the bones themselves are electrified. If I manage to smother it in one arm it immediately swaps over to the other, until eventually both together. With my legs too, I look like I'm doing some wild tribal dance. Without medication my mind is affected too.
I feel for you - and for so many others with similar stories of livelong rls-ordeals. You must have become a mentally very strong person. Awesome.... but I so wish life was and will be easier for you. Hope you'll find another efffective med soon. Did you try a DA? For many it works wonders for many years, just stay on a low dose and remain vigilant for signs of augmentation.
My GP gave me Ropinerol but I didn't use it (don't know if that's a DA). I'm scared to come off my opioid even though it's not working so well, and also I've read some awful things on this site about that drug, side effects, withdrawal etc.
Yes Ropinerole is a DA. the trick is these days to keep the dose low, that way you can hopefully avoid augmentation. Altho a low dose can still cause augmentation, but its easier to come off a low dose than those who have had their dose increased over time, to ridiculous doses. What opiate are you taking and the dosage. ? Also what dose of the Ropinerole have you been given..? No one these days now more is known about augmentation should take more than 1mgs and always start at the lowest dose.
What if the low dose doesn't work completely? If I am to rest I need the RLS to stop 100%, otherwise I'm left with slight pins and needles and a sort of low 'hum' throughout my body, and all my muscles taut - inability to relax - or sleep (I have insomnia anyway).
I've taken 60mg of Dihydrocodeine per dose (two tabs) for the last 15 years, three doses from around 7pm - 4am, but usually need to add another half tab now, apart from the final dose, which I try to keep to 45mg. Occasionally, if it's especially vicious, I need a whole extra tab. My GP says I must not take more than 8 tabs a day, and so far I've only needed 8 once. Sometimes, having taken the night dose at around midnight, RLS starts up again after two and a half hours, so I have to get up and do stuff, walk around etc., until 4am, take the next dose, walk around for 20 mins then go back to bed. I am ALWAYS tired. Taking three tabs (not often) results in a morning headache.
Luckily, I only need the medication during the day if I'm travelling, at the cinema, or otherwise having to sit still, so normally don't start it before 7pm.
Unfortunately I don't remember what the dosage was of the Ropinerole as, having decided not to take it, I returned it unopened to a pharmacy.
It sounds like you have come tolerant to taking the Dihydrocodeine . The Ropinerole if the lowest dose doesnt work, you have room to take up to 1mgs but no more. If the 1mgs is not working then you come off that med and try something else. No one gets 100% free of RLS, all the time. you only have to read the posts on here to know that.
I thought dr B did noyt recommend DA
Am I doing the right thing?
A question 
An Update and a Question 
Thanksgiving and a Question
Question about quitting Ropinirole
