Restless Leg Syndrome

**Minneapolismark** · 12-22-2010, 06:07 PM

One of the most aggravating things about being a Weggie seems to be RLS (Restless Leg Syndrome), or in my case it seems to be Restless Right Side of My Body Syndrome!

Before I knew my collection of bizarre symptoms actually fit a coherent disease, I used to refer to this as feeling "jangly."

Anybody else suffer with this? It seems to be the number one reason I can't sleep well at night. I've read that it is a fairly common symptom with Wegener's but don't know.

Few things feel more horrible than RLS. There is simply no vocabulary to describe the feeling.

Also I have a very bizarre way of getting it under control and wanted to see if anyone else has had a similar experience. A big thick peanut butter and jelly sandwich with a glass of milk for some reason puts the whole thing right. Thing is I don't always or often feel like eating one any more. Weird I know, but there it is.

**Sangye** · 12-23-2010, 11:31 AM

In the year prior to be diagnosed, I developed a body-wide "writhing" and need for constant movement all night. It's hard to describe. My arms and legs weren't jittery like restless legs, but they needed to keep writhing. And if I laid on one side, I had to flip to the other side every 5 secs. It was crazy-making. Once I started treatment it went away. Before last year's flare it started kicking in again, very mildly. It stopped as soon as we treated the flare.

**dunkie2202** · 12-23-2010, 04:48 PM

I get like that from time to time...It normally happens when I'm overly tired.... A few minutes after I close my eyes it goes away, I'm out for the count ZZZZZZZZZZZZZ

**Minneapolismark** · 12-23-2010, 05:10 PM

I wish it worked like that for me. I was up til 4am, then up again at 8am and have had that horrible feeling all day. Shoulders, between the shoulder blades, lower back, arms and legs. It is awful.

**jola57** · 12-23-2010, 06:08 PM

Yep, the flinging onto back, right side, left side, face down, then back to front, left side, right side, leg out , leg in, arm out leg in, arm in leg in...... you get the picture. How well i know the feeling Sangye.

**elephant** · 12-24-2010, 12:18 AM

Mark, I am really looking forward to you getting in to see your WG specialist, your symptoms are exactly what I went through when my WG was very active.

**Psyborg** · 12-24-2010, 01:12 AM

Originally Posted by Sangye

In the year prior to be diagnosed, I developed a body-wide "writhing" and need for constant movement all night. It's hard to describe. My arms and legs weren't jittery like restless legs, but they needed to keep writhing. And if I laid on one side, I had to flip to the other side every 5 secs. It was crazy-making. Once I started treatment it went away. Before last year's flare it started kicking in again, very mildly. It stopped as soon as we treated the flare.

I had something similar last year before diagnosis. I'd feel, for lack of a better term, like I was getting a weird tingling up my spine and through my left shoulder. Almost like goosebumps in feeling, a tingling followed by a cold feeling. Not sure if that is similar to what you are discribing, but it definitely would wake me up at night on occasion. Likewise with treatment it seems to have gone away, but if this is a symptom I never realized it, it was probably the first one I could identify if so.