Restless Legs Syndrome (RLS) Discussion Board

Hi All,

I have been missing for too long and hope to be back posting more often. I have missed you all so much but just felt like I didn't have much to say. Since my restless legs have stopped for over a year now, keeping my fingers crossed, I felt like I didn't have any thing to say.

Last year about this time I was having the biggest back surgery yet and I was worried my legs would be really bad, but so far since before then they have been fine. Since I went on Mirapex .5mg's three times a day and neurontin 600mg's three times a day everything has been good. I had to wear a body brace for six months right through the summer. I am good to go now and don't have to see the surgeon anymore. I hope I don't have to see him anymore even though he is really nice and the best surgeon ever.

I still have some pain in my back and have a rod from T10 down to L4 and I am fused from T10 to S1. I will always have some pain and will know when it's going to rain. But I am walking and now that we are on vacation I have been doing lots of walking and much more walking in the pool.

We are spending the month of May at The Villages outside of Lady Lake, Florida. I have a girl friend that lives here and I have known her since we were 13 and it has been so much fun spending time with her. We are even looking at places here to buy, it's a 55 and over city or I call it a city. Then I wouldn't have to be in the cold up in Maryland but I don't like the heat. But one can always stay out of the heat but the cold goes right through you especially when you have back problems. There is so much to do here and I know I would get out more and do things. Where we live now it just hasn't worked for me to get into different things. But here everyone is so nice and in the squares they play music every night. And so far I have done the electric slide twice.

The only thing about being down here we would be so far away from our families back in Virginia. And if we moved here we would have to down size and that would be good and we wouldn't have all the yard work etc. Wow I am talking myself right into moving.

But I did want to let everyone know that I am doing good and the RLS are at bay for now. What I am on is working but we all know that could change tomorrow. And as we say what works for one doesn't work for someone else. I have just been lucky to have found the right dose for me and it's still working.

I have tried to download the program for voice chat but it didn't work and I think it's because I have things set too high. Not going to worry about it until we get home from vacation. I have pretty much left my back chat room in yahoo because it just hasn't been a nice place to be lately.

I have missed all my friends and I hope to do more posting., Jeannie

Hi Jeanie - I thought I said hi this morning before I left for the day....but, guess must have dreamt it, lol. So, hellp! Glad to hear that you are enjoying your lovely vacation, that the RLS is still under great control, and that you've recovered excellently.

Yes you did Ann and then I posted in here so you are not forgetting anything. But I think I have been gone too long because it seems not too many people remember me. Oh well I guess I have to post more and start chatting again. Jeannie

Hi Jeanne

It's good to hear from you. I don't think you and I talked much before, but you might remember I was the one who has spinal fusion T6 through T12 and have rods and screws in my back, as well. I think we did talk about your back surgery some.

I just wanted you to know I am so pleased that you are doing so well!!! It is good to hear from you. You sound great! I am glad your back surgery is behind you and happy that you are enjoying life! I am also very glad that your RLS has not bothered you for some time.

Mine was "gone" for awhile after my back surgery, but it's back now--with a vengence. However, my medication usually helps me. That's a blessing to be sure.

I know many people will be glad to hear from you--they probably just haven't noticed. You know how busy people are and it is the weekend. I'm sure you'll have lots of replies.

In the meantime, thanks for filling us in. And, again, I am SO glad you are doing so good!

Jan

Jan, Thanks for the reply. Yes I do remember you and that you also had rods and screws in your back. I have a container at home with all the rods and screws they have taken out of me but what I have now will always be there. You know when they do the T area it's different. But yes I am getting around more but still have the pain and always will.

I am so sorry your RLS has come back. I don't know what has happened to me but I am leaving well enough alone. But then it can all come back tomorrow, but I sure hope not. The mirapex is working the best and I haven't changed the dose since I started last year around April.

Thanks again, Jeannie

Yes, I remember you posting some time ago, welcome back . I am glad things are good for regarding rls, and you will still have lots of advice and support to offer.

Hey stitch It is good to hear from you and so glad that your rls is doing great.

I know I have not been on the board lately as I was in Colorado last week visiting my sister and did not get back until late Monday and was too late to get on the chat line.

My rls is doing somewhat better. I do have some bouts know and then like last night it started up right after I took my meds but only lasted for about 3 hrs and then I was doing ok.

Take care of yourself and keep us posted how you are doing.

Hi Charlene,

So good to hear from you, and if you notice I have been posting all week. We are on vacation in Florida for the month of May and at night I just started to read the boards again.

When you said you had bout that lasted about 3 hrs, that is a long time. When I did have mine it would last that long and then sometimes way longer.

Since we have been in FL I have been on the go so much more. Go out everyday and when I go to the pool I do lots of walking. And now for some reason my back has started to hurt more but can't worry about it now. I have also notice my ring and little fingers on both hands are all tingling. I thought it might be because I am typing on a lap top at a table that is higher then I am use to using. It could also be my neck too and that is not good news for me at all.

While we are here on vacation in central Florida at a place called The Villages we have been visiting with my girl friend from 7th grade. What fun we have had picking up where we left off. Also, we have been looking at pre-owned and new houses with a realitor because we like it here and if things worked out we would like to move here. But so many things have to fall into the right places at the right time to be able to do this.

Yes, I know it gets HOT Hot hot here in the summer but it gets very hot in Maryland also. But it gets very cold there and that is just not good for the back. We can come up with so many reasons to move here but we would be much further away from family. Like I said things have to fall into the right places, like selling our house and not taking a lose etc.

Well just finished watching American Idol and my David didn't win but they were both good.

Charlene, I was in the chat room on Monday but I was either too late or no one showed up. I have the chat room down loaded so will try tomorrow to get into the chat room. I am using to chatting on line and love to talk. lol

Thank you for posting Charlene and take care, Jeannie

Hello Stitch...Glad to hear you are doing good. You will love Fl. and your relatives will be down to see you. My David did win. I picked him from the first. I may be old but I'm not dead yet. Lots of luck with the house..Pat

Hi Jeannie, it's good to see you back and great to hear that you're feeling well. I've meant to pop in and welcome you back for a while now, but I got a new computer about a week ago, and while trying to get it set up, our internet connection fried and we needed a new modem. (Ask me how I like Vista ). Anyway I'm back on line, and you're back "in town" here.

I know you do cross stitch, and now I have computer software that lets me scan in a picture and either print out a chart or sew it out directly on my embroidery machine. You can guess which one I do. I'm too old and too blind to do it by hand!

Hi Pat and Susan,

So glad to hear from both of you. Pat you are right we do love FL and have been working with a realitor. A lot of things have to happened before we get from point A to point B but we will see. I know the weather will be better for my back.

Susan so glad you are up and running again. I know what its like for the computer to be down.

We only have one more week on vacation and there is so much we haven't done. But there is so much too do that I guess we will just have to come back.lol Take care, Jeannie

Hello Stitch,

It’s so good to see your posting I can relate a lot to it! I think that its great things are going so well for you. My severe to moderate RLS has gone away thanks to mirapex and another medication. On the other hand I am keeping my fingers crossed as well and do not want augmentation on my meds. The program with my medication that works for my RLS I have only been on for about 3 months and I pray that it continues to work.

I have a big fear as what tomorrow could bring me with my RLS as well since it has been impossible to live with over the last few years. Anything is possible and I am aware of that. I have had weeks were it has gone away and been minor for some unknown reason then wham it’s there again and worse than ever! If the meds that I am on now continue to help my rls become more bearable I will still fight for a cure and awareness to this devastating disease until the day I day die no matter what because of what it almost did to my life. Many people on this board have helped me out during rough times and I am very grateful for them.

Cheers and best wishes
The fighter

Hi Jeannie I must apologize for not being in the chat room last Monday night. I had planned to be there; however I just came back from Colorado visiting my sister and got in late but will be there for sure this Monday night and hope to see you.

James333 I am so glad to see you posting and that your rls is doing so much better. I love to hear stories like yours as this is what makes this board so successful. I say prayers for my rls family and you, Jeannie and all of the rest are definitely included.

James333 we would love to see you in the chat room Monday night too.

Jeannie and James 333 please keep us posted on how both of you are doing. We really do care.

Hi James,

Thank you for that very nice post and I hope you continue to have luck with the new meds and rls. I am almost 72 yrs old so you know I went through many bad yrs w/o sleep. I have been on 3 different meds for rls and this has been the best and lasted the longest w/o any rls. I also take other meds, neurontin 600mg's 3 x,s aday and the mirapex .05mgs 3 x,s aday. Together both are working and that is even after more back surgery.

I have been through bad times also and this board took me in and helped me so much. Keep posting and don't stay away like I did. It's good to be back with my friends.

Good luck to you James and like I have said so many times what works for one doesn't mean it will work for everyone. I know it could all change tomorrow but I sure hope not because this is wonderful.

Take care James, Jeannie/stitch