Relief after nearly 30 years

Post by **Polar Bear** » Sat Dec 30, 2006 7:37 pm

Hi, I am a female aged 57 and for nearly 30 years suffered from rls, getting much worse over the last 10-15 years. Medical Consultant did circulatory tests in my legs but really I was told more or less I had to live with it. Working in an office I get to walk about as required, but theatre, cinema, watching a movie at home and trying sleep, all a nightmare. Twitching, creepy crawlies, often awake all night and feeling pretty sorry for myself. Then my doctor tried carbamazapine, to no effect. I found that lying on my stomach gave a little relief, but not always convenient!! Then I tried putting my feet into a bucket of really cold water, breath taking, but gave relief for a good hour, enough to get to sleep. Doctor would give me 2mg Diazapam (7 at a time) to let me get some sleep when I got desperate. THEN on the internet I read about ropinerole, started about 4 months ago at .5mg, no good, then up to 1mg, still not much good. My doctor agreed to up it to 2 mg and at last I appear - fingers crossed - to have found something that works, not 100% but pretty good. I get to sleep, and the occasional discomfort when watching a movie I can tolerate (or go get a bucket of cold water). Only thing is that I have a long haul flight in a few weeks, and wonder how I will deal with that. I had to keep pressing my doctor myself, and insisting on help, also I did a lot of research on the internet before going to the doctor. He was not unsympathetic, just didn't know what to do. I hope this info helps someone. Good Luck,

jumpy · Post by **jumpy** » Sat Dec 30, 2006 7:50 pm

Hi, Message body...Welcom... I have also had RLS since I was a child..I'm glad you found somthing that works..But as for the "long haul", I had a very long road trip this past summer. I almost went crazy and almost drove my husband crazy (making him stop so that I could walk arround)... I finally broke down, at his insistance, and took a Lortab. It hung in there for four or five hours.. Maybe your doctor would prescribe something that could relax you and be mild enough not to knock you out. Someone else out there may have a better answer...Keep checking...and good luck....Pat

jumpy · Post by **jumpy** » Sat Dec 30, 2006 8:01 pm

Hello again Betty...boy is my face red...I was typing away and instead of your name I typed message body..Really wasn't paying attention..Sorry...and again good luck....Pat

Post by **Polar Bear** » Sat Dec 30, 2006 10:26 pm

jumpy wrote:Hello again Betty...boy is my face red...I was typing away and instead of your name I typed message body..Really wasn't paying attention..Sorry...and again good luck....Pat

Thanks Pat, haven't heard of Lortab, maybe it has a different name in the UK. Will look it up on the internet. Ta again.. Betty

Post by **Polar Bear** » Sat Dec 30, 2006 10:34 pm

By the way folks, for those new to this, ropinerole is also known as Requip.

jan3213 · Post by **jan3213** » Sat Dec 30, 2006 11:25 pm

Hi betty

Thank you so much for posting about your successful (hopefully) treatment of RLS. I hope it continues to go well for you.

We're close to the same age and have had RLS about the same amount of time. I've been on Mirapex and Clonazepam for quite a long time and recently had quite a major back surgery. Thought my RLS was better after the surgery, but--I'm afraid it's coming back with a vengence.

I just wanted to welcome you to the forum. As you see, someone answered your post pretty quickly. That's the way it is around here. People are very generous and kind, so if you find yourself needing a place to vent, please do so. Believe me, I've done it plenty of times.

I hope you keep us posted on your treatment, betty. In the meantime, if you have time, you might want to read some posts--kind of get acquainted with the site and the people here. Some come and go, some stay for awhile, some stay for quite awhile---but, we're all family, nonetheless.

Happy New Year!

Jan

ctravel12 · Post by **ctravel12** » Sun Dec 31, 2006 2:05 am

Hi Betty and welcome. I am glad that you are finding relief for your rls. I can totally relate to you when you said about taking trips, sitting,sleeping etc. .

My dh and took a trip this past summer to Colorado and I about went bonkers. Had to cancel a trip in August due the rls.

I am on clonazapam and so far is working for me.

Please let us know how you do with your trip.

Like Jan said read some of the posts. A good one to read is the forum New to RLS "Managing RLS' has some good info to read.

Please keep posting and let us know how you are doing

Again, welcome you have found a wonderful supportive group.

Post by **ViewsAskew** » Sun Dec 31, 2006 8:35 am

Hi Betty,

Lortab is an opioid - in the US it goes under several names including Vicoden, Norco, the generic hydrocodone, among others.

Opioids are great for short term relief in a situation like this. They don't help everyone, but it would be worth checking out. Other options include sleeping through the flight on a benzo of some kind, Sinemet (which works really fast and is great for situations like this, but not for regular use. Taking a pillow - "cushpush" is one name I've seen -that you can put on the floor and alternately "knead" with your feet may help keep your feet busy so that they legs don't go nuts. Don't forget to get an aisle seat, and if possible, get an emergency row exit for a little more leg room.

There are some other posts about plane trips on here - might be able to find them by searching on "airplane" or "plane." I know there are additional ideas in them.

Sounds like for the most part all is under pretty good control. Can't ask for much more than that!

Post by **Polar Bear** » Sun Dec 31, 2006 9:50 am

Thanks to those who have replied already. I will look up the medications recommended and will keep note for the future. About an aisle seat for my long journey, which is N.Ireland to London Heathrow then direct to North Western Canada there are 6 of us travelling and we have managed to pre-book 2 rows x 3 seats, giving us 4 aisle seats, thus giving either leg a good option. Yes, I have heard of this 'cushion' for the floor to knead with the feet. I fully intend to work my way thru all the post-its, and hints and the 'Managing RLS'. tho my return to work on 2 Jan 07 will curtail my time and I find that my relief with requip which has enabled me to sleep at night for over a week now, means I don't have the same time to spend at the computer. I wonder is it a coincidence that I also havea back condition, which is arthritic changes in the lumbar area and a slight scoliosis in the same area (which I have only recently learned that I have). Tho this wouldn't explain the occasional creepy crawlies that also make it to my arms !!! Thanks again, Askew, Jan and Jumpy
Good luck everyone, and I will read everything that I can - as soon as I can, without being antisocial to my husband.

Post by **Polar Bear** » Sun Dec 31, 2006 9:54 am

Sorry, thanks also to Ann and Charlene for replying. Still new to this Forum !!! Betty

tazzer · Post by **tazzer** » Sun Dec 31, 2006 5:03 pm

welcome to the board betty! I am on sinemet instead of requip, requip made me very sick. the sinemet works great and fast but it has a very high rate of augmentation, so i only take it sporadically and when i take a very long drive or such. it still doesn't work unless i have taken my pain meds. again welcome to the board.

i work with someone from ireland, in fact he is there visiting his mom and grandma right now.

happy new year!

dee

Post by **Polar Bear** » Sun Dec 31, 2006 6:19 pm

Thanks Dee. I'll bear Sinemet in mind. Ireland is great, I hope your friend has a great time tho of course he will as it is his homeland!

Betty

Post by **Polar Bear** » Sun Dec 31, 2006 6:30 pm

Just realised that when listing symptoms, I didn't mention the burning feet. When reading other postings I read about magnesium and will certainly be trying this first trip I make to the stores. Hopefully it will save me filling a bucket with really cold water in the middle of the night!

I am finding this Forum so interesting.... and I've only just begun.

floquilter · Post by **floquilter** » Thu Jan 25, 2007 11:59 pm

I've asked a few questions on another board. But you were talking about a plane trip ahead. I'm to fly in the last half of Feb. I've only had one doctor listen to me and say that I had RSL. I got no where whith others. I think one reason I didn't get to the bottom of my problem was because I wasn't having sleep trouble. The reason being I'd had sleep trouble for years and was on something for it. My symptoms went from tingles in the legs and feet to many other sensations in the legs and feet including pain. Then I started with symptoms in my upper body. The symptoms would start as soon as I woke up. I only got relief from lots of walking or movement. I couldn't sit, cars we torture. I'm on Klonapin now and am improved. I'll ask my doctor about something to help during my plane flilght other wise I'll probably backout of it from too much anxiety. I really don't want to do that.

jumpy · Post by **jumpy** » Fri Jan 26, 2007 12:04 am

Flouqilter, try an opioid. Lortab worked for me on a long car trip...Pat

Restless Legs Syndrome (RLS) Discussion Board

Relief after nearly 30 years

Relief after nearly 30 years

relief after nearly 30 yrs

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I'm new to RLS