Newbie

[Anonymous]

Hi all- I'm new here but I've suffered from RLS for over 10 years. Mine always seems to come in "clumps" like a period of days in a row and then it stops for a while- sometimes a couple of months at a time, and then it comes back like this week. Last night I was up until well after 3:00 (I ended up rearranging furniture- that was a first) and never really slept solidly because the RLS was still there but I was able to sleep through it. You always wonder how you're able to do that. Earilier this year I discovered that caffienated diet sodas in the afternoon were affecting me and after I cut that out, my RLS improved dramatically. When it came back I was left perplexed. Now I try not to even eat chocolate too late in the day (now that's a real sacrifice). I get it in my legs and my arms but not usually at the same time, but oh how lovely it is when it does happen at the same time. I have also noticed that if I take a few weeks off from regular exercise and then start up again, the RLS will be activated again for a few days. The RLS started in my legs following a very serious operation on my spine in 1992. I always believed that it was related to the cutting on the nerves. Then, my theory seemed to be confirmed when it started in my arms and shoulder-blade following neck surgery. Has anyone else noticed this connection? This syndrome really is a mystery.

[jan3213]

Hi, it's Jan

I don't know if anyone has welcomed you yet, but you'll get a welcome from me anyway! I'm really glad you found us, but am so sorry you have RLS. You've come to the right place, if you haven't already discovered that.

I've had RLS for 20 years, and I would suffer just like you do (and have, night after night) if I wasn't on medication. However, some people find help in the non-pharmaceutical section of this site.

Let me get to the point. Caffein is BAD for RLS, as you have alredy discovered. I found that if I exercised right before bed, it really made my RLS worse. Some people do develop RLS after surgery or a traumatic injury. I'm not sure what the percentage is, but I believe the majority of sufferers inherit the syndrome. I did. I believe my father had it; however, he has been deceased since 1979 so I'm not sure. I just remember that he complained about his legs a lot.

Sounds like you've really been trying to learn more about this darn syndrome! One of the things we suggest (and maybe you've already been doing it) is to read as much as you can about RLS. There is a lot of good info in the posts on this board. Have you found a doctor yet? It is so important that you find one who cares and who LISTENS to you. There are some doctors, unfortunately, who really don't seem to know much about RLS. Rememer, you HIRE your doctor.

You'll also find information on the drop-down menus at the top of this page. If you look under support groups, click on group links and go to the So. Ca. RLS Support Group Site, there is a Medical Alert Card. Just scroll down on that So. Ca. site until you see where it is, then print it out. This card lists medication, OTC and prescribed, which exacerbates RLS. There is also a place where you can put personal information. Having had a bad experience at a hospital, I think it would be a good idea to carry this card with you.

Once again, I'm glad you found us. We have a lot of wonderful members who will help you in any way they can. And, if you just want to vent, this is the place to do it! We all understand what you are going through and we will listen. Many people who are "normal" can't possibly understand how awful RLS is. So feel free to just "let loose" anytime you want to. We are a "family" here and you've found a home!

Good luck and let us know how you are getting along.

Jan

[Anonymous]

Thanks for the warm welcome, Jan! I'll print out that medical info card. I'm going to do a little sleuthing to see who else in my family may have RLS, too.