restless arms

[karel]

i heard that in some cases the rls symptons can move into ones arms is this true has any one besides myself felt these sensations?

[sthomp66]

Hi Karel -- I have restless arms too. When younger (I'm 39 now) I only had it in my legs. As I've gotton older, within the last 10 yrs, it's progressed into my arms. My dr. said RLS worsens with age. The arms can really drive you nuts sometimes. When my legs act up, I can just stand up and the crazy legs go away. With my arms however, it's not like I can stand on my arms, not that I haven't tried!! The first time my husband found me stand on my hands in the hall way, he thought I needed a straight jacket for sure. So....to answer your question, you are NOT the only person with "crazy arms". Hope this helps!

Shelley

[Neco]

Have had it in my arms almost from the start also, not uncommon at all I think

[jan3213]

Oh, the "crazy arms"! I've had them. Believe, me--it's no fun, as you know. One night, my husband came downstairs and found me punching into the air as hard as I could, as if I were pounding a punching bag. So, you're not alone. Like you said--you can get up and walk on your legs, but I'd like to see ME try to stand on my hands! What a joke that would be. I'd probably break both of my arms or something worse!

Good luck and I hope those "crazy arms" stay away!

Jan

[Kisster]

Whew! I'm not crazy.... it's just my arms that are "crazy"!!!

Actually, mine has been more recent and was starting to scare me a bit. I had a carpal tunnel release in the right wrist a few years ago and have had problems with that elbow for a couple years also. Lately both arms have been acting up on me and it seems almost impossible to make them stop.

I imagine I look like I'm swimming furiously while walking around... must look kind of silly to everyone else!

[Romulus]

Well, I first had the rls in the arm about 3-4 months ago. The one and only time! I thought for sure I was going to have this also, all my life. It lasted only as long as the leg rls and in sync! each movement in the leg was accompanied by a faint 'tic' or 'thump' on the inside lower right bicep, just at or above the elbow. Never have had it again, have been a vic on a reg basis for about 20 years, had it as long as 45 years, am 65 now. Mother had it, younger brother has it, theirs were/are painfull cramps mine, legs full of ants!
Romulus

[DRx]

I have also gotten restless arm as well as the restless leg....it hits in the elbow and sometimes wrist area. If you have experienced the "RAS" as well as the "RLS" ,then I bet you experienced your first RLS episode as a child. I was 5 or 6 years old when I had my first episode of RLS. Anyone else?

[Guest]

RLS usually affects my legs and arms. Taking meds from the do not take list I have had it affect my entire body. As a child I can remember trying to explain my sensations to my parents, when my sister who I shared a bed with would complain about my moving around and kicking. My grandmother would always rub my legs. Then it was classified as growing pains. I do know that I had trouble with day time drowsiness as a child. In kindergarten at nap time I would fall completely to sleep. I can remember my parents talking about my kindergarten teacher who was concerned I wasn't going to bed early enough! I started kindergarten when I was 4. Hazel

[Walking After Midnight]

I've been avoiding answering this one cause frankly, I don't have anything good to say. All I can do here is complain...more...about our least favorite topic.
I have in in the Bi-cep area of the arms.
You know, one thing I've noticed is that my RLS is worse on the right side of my body, sometimes only there. I guess I never noticed it before because when it's bad it seems to take over my entire body.
But anyway, I know about punching the air. Usually I'll end up moving like someone who's cold and just got a chill, trying to shake it, but sometimes I just have to flat out jerk my arm out and shake it around for awhile. Yippee.
My RAS (Restless Arm Syndrome?) is as bad as the legs at times and like every other bad thing...seems to be getting worse now that old age is setting in.

[ViewsAskew]

I can't tell you how much I wish they would change the name of this disorder. I've even written the RLSF about it. The problem, I guess, is that there are ALL these prior references to it and it would be difficult. But, haven't other disorders had their name changed???

Many people have already said it - the name doesn't engender any sympathy, rather strange looks. It certainly isn't accurate, since many of us have it in other body parts.

Maybe we could start a letter writing campaign . Or a petition! Yeah, an internet petition! . We can send it to doctors and societies in all countries.

First, let's start by determining the best name. Not sure what the criteria would be, but they have to include that is makes people take us seriously and it includes all body parts.

Any ideas???

Ann

[cornelia]

I have restless arms as well and did not have RLS as a child. When the RLS became severe my whole body was involved. Now, being on a lot of meds, the RLS is 80% in my arms, not the legs. Go figure. I think the disorder should be called Restless Body Syndrom or at least Restless Limbs Syndrom.

Corrie

[jan3213]

Ann and Corrie,

I think you have a good idea here. Corrie, I like either one of those--but, probably Restless Limbs Syndrome would make more sense to people, do you think?

We see how many people are confused because they don't think they can have RLS in their arms. I say go for it!

Jan

[cornelia]

I find it strange that in RLS the word 'Legs' is used and in PLMD/S/W the word 'Limbs'i s used. Maybe because dr Ekbom coined the term RLS and dr Lugaresi recorded PLMS, as I read in the Medical Bulletin 2005, that came by post yesterday?

Corrie

[ViewsAskew]

That sounds logical, Corrie. I suppose for PLMS, the word 'limbs' is appropriate. As many people have reported, though, RLS can even be in the neck, face, pelvis, back, or anywhere on the trunk of the body. So, it's even more than Restless Limb Syndrome.

Seems to me the the word syndrome is also part of the problem. Many people associate the word syndrome with something that isn't proven - a loosely assoiated group of symptoms, often without a known cause. So, people think, "Oh, it's all in their heads." I'd be very happy to get rid of the syndrome part along with the leg part.

Unfortunately, we don't know what causes it yet, so the name can't be taken from the cause. It seems simplest to just name it after Ekbom himself. Ekbom's Disease, Ekbom's Disorder, Ekbom's Syndrome? Of course, then NO ONE would know what we had, especially not the doctors that we have been educating!

Maybe that's the key - get everyone to know it through all this advertising, and THEN change the name. It would be highly visible then.

Anyway, most of this is probably a pipe-dream

Ann

[Walking After Midnight]

To tell you the truth, I don't like the name at all.
Restless Leg Syndrome. What? It's almost embarassing to say sometimes. For an affliction that causes this much pain and trouble and depression and disruption in one's life..."Restless Leg Syndrome" just doesn't cut it.

It's not a name that will make people take notice. It's not a name that will make Doctors and Scientists want to get on the ball and find cures and new ways to make our lives better. Restless Legs? Big deal. That title sounds like we are afflicted with nothing more than say...Tennis Elbow or Athlete's Foot. I missed work one day because I hadn't slept in five or six days, when I finally got in to see the Neuro, he wrote me an excuse..."In my care. Restless Leg Syndrome" and though the Boss didn't come out and say anything, the look when he read the excuse was enough.

I say take the "Restless" part, the "Legs" part and the "Syndrome" part out of it and start all over again.