new here, with question

were4jc · Post by **were4jc** » Wed Mar 02, 2011 7:17 pm

I'm new here and my Dr. can't answer this but has anyone heard of RLS extending into the arms. When my RLS is real bad I can feel it up into me left arm. I'm worried that if it can't then I have (possibly) a more serius problem. I don't have a bad heart history but I am 53 and things change fast.

Post by **Polar Bear** » Wed Mar 02, 2011 10:38 pm

Welcome to our site.

And yes, without a doubt rls can occur in your arms. I have it in both legs and both arms but mostly it is on the right side, sometimes in both arm and leg, and sometimes just the leg, or just the arm.

Sounds like your doctor needs a little rls education.

A wonderful book full of great advice and information is Coping with Restless Legs Syndrome by Dr Buchfuhrer (and others). It is available on Amazon and I have it and refer to it constantly. It is also great to take with you and show certain sections to your doctor, as necessary.

Please ask anything you like and we will try to help.
None of us are medical doctors but we do have a lot of experience of dealing with RLS and look forward to hearing how you deal

dogeyed · Post by **dogeyed** » Thu Mar 03, 2011 4:01 pm

I would like to respond also. I got RLS in my arms, as well. And I also got full-body jerks. My sleep was ruined and I was in a lot of pain. This all took place during my nontreatment period of about nine months.

On the arms, it ached just like my legs, it started moving into one arm and then got in the other one, exactly the way my legs did. I noticed it maybe six months into when RLS in my legs began. My arms were never as frequent as my legs, but they ached quite a bit when they did bother me.

Towards the end of my nontreatment period, my whole body would just jump one big time, which is a little different than RLS, in that it actually RELEASED the urge to move, but I knew it was part of RLS just the same. This happened maybe three times, almost came right out of my chair when this would happen.

Once I received treatment with opiate derivative drugs, codeine, all of it slowed down, arms and body jerks finally quit, altho my legs continue to bother me from time to time, especially when I am lots more active than usual, or when my drugs run out before refill time, or when I've been sitting in a chair too long.

Post by **ViewsAskew** » Thu Mar 03, 2011 8:08 pm

The RLS Foundation has agreed to review the name and see about changing it because, in part, it can happen in any body part. Any. It seems to almost always start in the legs, but moving to the arms can happen at any point - or never happen.

It took 30 years for mine to move to my arms. My mom, who's had it for 55 years has never had it in her arms. My brother, who's only 32, has had it in his arms more than his legs for most of the time he's had it (about 15 years).

It is an extremely odd feeling and I can see how you'd be concerned about having a heart attack or something similar. If the feeling is identical to your legs, happens when it's happening in your legs or at similar times, then it's probably RLS. It may be wise to check it out if you have any concerns that it's not RLS, though.

fraujoolie · Post by **fraujoolie** » Fri Mar 04, 2011 12:42 am

I'll chime in and also give the arms a vote. I started out with RLS only in my legs, and after experiencing augmentation on Mirapex, I started getting it in both of my arms. Even after I discontinued the Mirapex, the arm symptoms never went away.

sleepdancer · Post by **sleepdancer** » Fri Mar 04, 2011 1:12 am

Like Julie, I developed symptoms in my arms while on Mirapex, however, the arms issues went away when I weaned off the med. In my video about half way through my arms get involved, but that's the PLMD, not the RLS.

Betty/WV · Post by **Betty/WV** » Fri Mar 04, 2011 6:10 am

I have never had it in my arms, but have heard of many that have.

About the changing of the name from RLS, I just got my copy of NightWalkers (online) and the Board of Directors of the RLS Foundation has changed the name Restless Legs Syndrome to EKBON DISEASE. I guess they had a tremendous response to the poll for changing the name. As you have been discussing, it happens in the arms also. And the name RLS trivialized the condition.

BETTY/WV

Post by **ViewsAskew** » Fri Mar 04, 2011 10:45 am

Ah! They really changed it????? That is wonderful news. Did they say if they were changing the name of the Foundation, too?

Thanks for the news, Betty.

Betty/WV · Post by **Betty/WV** » Fri Mar 04, 2011 12:07 pm

CORRECTION; The name change of Restless Legs Syndrome to EKBOM DISEASE. On my previous post I typed EKBON instead of EKBOM (hit the n instead of the m) Sorry, don't want to pass on incorrect information.

BETTY/WV

Betty/WV · Post by **Betty/WV** » Fri Mar 04, 2011 12:13 pm

The article didn't say anything about the name change of the foundation (unless I missed it) but I think they would have to change it. It will be hard getting used to saying Ekbom disease instead of Restless Legs Syndrome. But I agree the name RLS trivializes the disease. Thats why people look at you strange when you say RLS, there eyes say "big deal, so you had a restless night" They can't comprehend what we go through with this monster of a disease. If they could just see the suffering it causes.

BETTY/WV

wigglypain · Post by **wigglypain** » Fri Mar 04, 2011 10:57 pm

Well I can vouch for the disease being in the arms as well as in my right chest/shoulder and of course the legs. My arms started being very painful when I was put on Requip(EVIL DRUG, for me) back in 2003. I can not recall the weird painful sensations before trying it. My arms and legs have never been the same only worse. Which now I take Methadone 120 mg a day.

Post by **badnights** » Sat Mar 05, 2011 4:59 am

Requip pretty much destroyed me too. Moved it into my arms where it has remained ever since.

Post by **ViewsAskew** » Sat Mar 05, 2011 5:43 am

For me, Mirapex caused it to move to the arms....any dopamine agonist taken to the point of significant augmentation (and it can happen fast) seems to cause this. For most of us, once it's progressed to new body parts, it stays there even if we stop the drugs.

Post by **Polar Bear** » Sat Mar 05, 2011 9:11 am

I had symptoms in arms and legs before I began any medications.

Post by **ViewsAskew** » Sat Mar 05, 2011 9:53 am

ViewsAskew wrote:For me, Mirapex caused it to move to the arms....any dopamine agonist taken to the point of significant augmentation (and it can happen fast) seems to cause this.

As PB pointed out, this doesn't mean it can't be in other body parts without taking these drugs! Many people have RLS in arms or other body parts prior to taking or never having taken a dopamine agonist.