RLS outside the legs?

rdb · Post by **rdb** » Mon Jan 08, 2007 3:47 pm

I am struggling with a horrible sensation, which the closest I've been able to describe is as a borderline electrical, gnawing or nibbling or crawling pseudo-itchy sensation. When it acts up, it can temporarily go away by touching the area against something, and maybe rubbing it slightly.

I've noticed that the way RLS is described is identical. Except it's not in my legs; it's in my back. It's at the edge of my left shoulder blade closest to the center of my back. It's most likely to act up when I'm sitting, and it used to seem limited to when I was sitting and concentrating (on studying or work). But now, it's been happening while standing on rare occasions, and I now see that I don't have to be concentrating on anything in order for it to happen. Like I said, rubbing it against the back rest helps temporarily, but it is an excruciating, highly aggravating feeling that I can't stand, especially these last few months, as it's become a lot more frequent.

Is RLS known to happen in places other than the legs? What else could this be? Any help would be appreciated. I'll have to go to the doctor, but I'd like to have info on a link between this and RLS before I talk to him. Thanks.

Neco · Post by **Neco** » Mon Jan 08, 2007 4:18 pm

It's not too uncommon for people to feel it in other places. At times I will feel it in the same place you are, in addition to one of or both my arms.

rdb · Post by **rdb** » Mon Jan 08, 2007 4:22 pm

Thanks. What I have seems different in a few ways (it doesn't get worse at night, and it doesn't happen while I'm in bed." But hopefully I have some kind of framework to proceed with.

Post by **ViewsAskew** » Mon Jan 08, 2007 5:32 pm

The criteria isn't restricted to bed - it's when at rest. Rest can be sitting watching TV, having dinner, at the movies, etc. It does tend to follow a circadian rhythm, but can worsen over time, so that it's eventually at all times. Was it initially worse in the evenings?

And, as Zach said, it's not restricted to one body part at all. While the majority of people have it start in their legs (and that varies - feet only, calves only, thighs only, all over), for some it starts elsewhere and for some of us it spreads from the legs to other parts.

As you said, now you have a starting point.

rdb · Post by **rdb** » Mon Jan 08, 2007 8:38 pm

I don't think it ever was worse in the evenings. My earliest memory was at work back in 1992. But based on what I'm hearing & reading, at this point, I figure it's either RLS or a close relative thereof. Thanks!

Anonymous · Post by **Anonymous** » Tue Jan 09, 2007 1:28 am

sugbrendas · Post by **sugbrendas** » Tue Jan 09, 2007 6:50 pm

I've had RLS just about everywhere and every way. My shoulder, legs, arms and butt. The butt was the most shockng.The 1st time I was lying on my rt side in bed and as soon as the movement began in my butt my leg went straight out into the air. Then i said woops! LOL
Yeah, i so agree its alot more than restless leg.

floquilter · Post by **floquilter** » Mon Jan 22, 2007 5:57 pm

I just found out I have RLS. I feel it as soon as I wake up. I had it in my legs to begin with but it has gone into other parts of my body. All my basic reading on RLS says nothing about feelings in other parts of your body. Until reading here I wondered if I was the only one.
I do have something that I've not heard anyone else mention. Late at night my left ear vibrates so much that I stick my finger in my ear and it stops. Sometimes massaging the muscles on the left side of my neck helps relieve some of the vibrating. Has anyone had this or heard of it before?

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Anonymous · Post by **Anonymous** » Mon Jan 22, 2007 7:02 pm

floquilter · Post by **floquilter** » Mon Jan 22, 2007 11:42 pm

The sensations I first noticed were mild tingle in my legs and feet. These tingles got stronger and stronger. Then I started felling like I had cool water sloshing though my legs. I'd feel like something was brushing agains my legs very lightly. Then came the feelings of walking through brambles. When this started I felt it all over - it would happen in different places not everywhere at the same time. I also started to feel muscles drawing from the top of my neck down through my shoulders then arms and chest.
I can hardly stand to ride in a car. If I sit long I'm miserable. I watch TV pacing the room.
The vibrations in my ear is inside. It feels like the eardrum is going crazy. The ear vibrations came at the same time I started to get the first tingles.
I hope that answers your questions MMC. Thanks for your interest.

ctravel12 · Post by **ctravel12** » Tue Jan 23, 2007 12:10 am

Hi Floquilter and welcome. So sorry you have rls, but you have found a wonderful caring and supportive group.

I am glad that you are reading alot of the old and new posts as there is so much info that will give you some insight of what is going on.

A good forum to read is New to RLS "Managing RLS" there is also an excellent article from the Mayo Clinic Algorithm and the rlshelp.org

Please keep us posted on how you are doing and again, welcome.

Anonymous · Post by **Anonymous** » Tue Jan 23, 2007 2:11 am

When did you first notice the sensations? Did they come on strong or have they built up in intensity over time?

Are you taking anything for your RLS? Seeing a doctor?

floquilter · Post by **floquilter** » Tue Jan 23, 2007 3:18 am

MMC. Thanks you so much for your answers and help.
Have you every heard of anyone that had trouble with their ear like I do?
I just found out that I have RLS this past week. The doctor put me on Klonepin twice a day. That gave me some improvement. Today I took a Ultram and a Klonepin and have felt better than I have for the last few months. I will be seeing a new doctor Feb. 14th that I was referred to.
It is good to be a part of this group.

Anonymous · Post by **Anonymous** » Tue Jan 23, 2007 3:44 am

amytazzi · Post by **amytazzi** » Tue Jan 23, 2007 4:46 am

Mine also started in my feet, Half of my stomache was affected as was one knee and my wrist and hand. It is such a strange disorder. I think most be people do not realize how terrible and life altering this disorder can be. I am feeling better although still have symptoms. If I had continued with the degree of sensation I had, I don't know what I would have done. Good luck to all out there.

Amy

Restless Legs Syndrome (RLS) Discussion Board

RLS outside the legs?

RLS outside the legs?

I Just Found Out I Have RLS.

rls outside the legs?