new member

[Barb G]

Hi everyone
I've been reading posts here and theres for the last few days and I decided it would be best if I just post my experiences.

I was diagnosed with RLS 2002 by process of ilimination. This was after my ignoring it for years because my family doctor dismissed my attemps at asking about it. I told him it was difficult to describe and he didn't listen after that.

It bothers me in the evening especially while watching tv. I've never thought of it as pain but rather a very uncomfortable sensation. I've pased my house an awful lot over the years. At first I thought laying on my stomach helped but it doesn't really. If they are bothering me when I go to bed I can usually just move my legs around for awhile and then fall asleep. If they are bad I have to pace for half an hour then go to sleep. It shows up in either leg, sometime both. I can't pinpoint an exact location on my legs. As of yet it doesn't actully wake me in the night. If I wake due to something else then I have difficulty getting back to sleep because they will bother me now that I'm awake.

I also experience numbness and tingling on the bottoms of my feet while the RL is occuring. I havn't seen that anywere in posts I've read. Does anyone else get this? Perhaps it is something else as my arms are very frequently numb. Another thing I can't seem to find out what it is or what causes it. I was tested and it's not carpal tunnel although it acts very similar

The doctor first gave me Quinine (use for malaria). Didn't work. Then he gave me Amitriptyline. Has made it better but has not taken it away. I take a little extra on nights it's bad. However I'm thinking it really doesn't work as well anymore. It just helps me get to sleep. I'm afraid to go off the meds though. As I let too much time lapse before renews the scrips back near the beginning of taking it and went severl days without and my symptoms became unbearalbe.

I don't believe I have PLM. My husband doens't complain of movment from me. Sometimes I jump as a muscle spasms just as I'm falling asleep. that's not the same, is it?

I think it's in my family as I remember my aunt always rubbing my uncles legs for him at bedtime. My daughter had growing pains as a child. She rarly has symptoms right now.

I also thinnk that when I drink alchole it worsens my RL. Excesive exercise definatly worsens it. I find it odd that a foot massage makes the feeling come on.

I think I covered everything. I look forard to hearing you're thoughts and experiences.

[ViewsAskew]

Hi everyone

I was diagnosed with RLS 2002 by process of ilimination. This was after my ignoring it for years because my family doctor dismissed my attemps at asking about it. I told him it was difficult to describe and he didn't listen after that.

I also experience numbness and tingling on the bottoms of my feet while the RL is occuring. I havn't seen that anywere in posts I've read. Does anyone else get this?

The doctor first gave me Quinine (use for malaria). Didn't work. Then he gave me Amitriptyline.

Sometimes I jump as a muscle spasms just as I'm falling asleep. that's not the same, is it?

I also thinnk that when I drink alchole it worsens my RL. Excesive exercise definatly worsens it.

Welcome Barb; sorry you had to find us . You mentioned that you were self-diagnosed - most of us here are, I think. Docs still don't quite get it. Glad to hear you are reading the posts; they contain great information. You mentioned two medicines that actually are not helpful for most RLSers. There are some links in two other threads that will lead you to the So Cal Support group. Try the General Topics section and the Starting Out: Links thread or the New To RLS section and the Websites thread. The So Cal Support group site lists meds that help. It's one of the best sites for helping figure out drugs.

Jerks when falling asleep are called hypnic jerks and are a type of myoclonus - many people have them and they are not a anything to worry about. They are not the same thing as PLMD either, which is also referred to as nocturnal myoclonus.

If you keep reading posts, you'll find that many people avoid alcohol, caffeine, new or hard exercise, tight clothing, etc. I also think some people have been taking about numbness just recently. RLS is very different than many other disorders, diseases, or syndromes. There are a myriad amount of ways to experience it and treat it! If you think of a small circle within a large circle, the small circle is what we have in common - an uncomfortable feeling in legs, arms, or torso that makes us move voluntarily or involuntarily, and that may or may not come with pain. The rest is all in the outer circle. With treatment, there is a huge spectrum, too.

I sometimes wonder if they will come up with subcategories of RLS - or maybe different genes that cause it.

Happy reading!
Ann

[Barb G]

Actually I was diagnosed by a doctor. However my family doctor has taken over the monitoring of me and my meds. I don't have much faith in his ability to help me with a new medication.

I know very litte about medications and such and was happy to get any relief with the amitriptlyn. I mentioned what I take to someone who also had RL and she said that it wasn't "real RL medication" it was just a sleeping pill. However the way she said it gave me the impression she though I didn't really have RLS.

Anyway, any advice on meds will be greatly appreciated. Thanks.

[ViewsAskew]

Please take a gander at the links I suggested. They will tell you more than we could write it hundreds of posts.

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=94

Ann

edited 2, Feb, 2005

[jrowley]

Barb,

I have the numbness and tingling all the time. I get it alot when I am working at my desk or sitting in the chair watching tv or riding in a car. If I sit to long then it begins turn to pain. I also get it in my arms too. But unlike you I do the leg jerking at night, therefore I wake in the morning and the backs of my calfs hurt.

[jrowley]

Barb,

I have the numbness and tingling all the time. I get it alot when I am working at my desk or sitting in the chair watching tv or riding in a car. If I sit to long then it begins turn to pain. I also get it in my arms too. But unlike you I do the leg jerking at night, therefore I wake in the morning and the backs of my calfs hurt.

These links send you to the post a reply page on this site. you might want to take another look at them

[jrowley]

opps i quoted the wrong one i was trying to quote the message before mine