Im a new user, just want to say hi to everyone

kaz60969 · Post by **kaz60969** » Sun Nov 27, 2005 1:52 pm

Hi everyone

I am a new user and just getting the feel off the site at the minute.
I suffer from RSL and i also have back problems, i was taking co-proxamol but i am trying to come off them as they dont seem to help with my RSL. This condition is very frustrating and i dont know much about it, my doctor told me i had it but that was about it, i feel i am left to basically get on with it. during the night i find myself having to get up and rub lotion into my legs to try to get them to relax so i can get some sleep, its a horrible feeling, im at my wits end with it. My partner is now being disturbed during the night with my legs jumping around which sometimes i am unaware off, anyone got any suggestions?

Penguinrocks · Post by **Penguinrocks** » Sun Nov 27, 2005 2:30 pm

Hi Kaz and welcome, welcome!

I'm so sorry that you have to suffer with us. Lately, I've been in a major flare up and I do believe after some major research that my Rhuemy doesn't know ca ca.

Anyhoo, I'm on Neurontin 900 mgs now for sleep. I take muscle relaxers as well as pain medicine to get thru the nights. Last night was not good with all three of these...sleep didn't come til about 1 a.m. and took all my meds at 10 p.m.

One thing is good, your doc told you that you have it. Now talk to your doc and work out what is best for you. Doctors work for us. So, be honest and share everything and hopefully your doc is one of the good ones.

Penguin

kaz60969 · Post by **kaz60969** » Sun Nov 27, 2005 2:46 pm

Hi Penquinrocks Thank you for your welcome. I didnt realise there was such a condition as RSL until i got it. I have had back problems for over 3yrs now and all this time i have been unable to work because of this, i now have the additional problem of RSL. With my back problem i am going round in circles with all the docs want to do is put me an medication, i have been for over 3yrs now and they dont do a thing to help me. I have just recently had my 2nd MRI scan to which the consultant says he is going to give me yet another injection this time into my spinal canal, the last one i had into my joint only lasted 9weeks so im not hopefully about this one. With RSL i was given co-proxamol to which i was told was a relaxant after reading the leaflet i found it was a pain killer, why was i told it was a relaxant, i feel i am getting nowhere with either my doc or my consultant. An op is possibily on the agenda for my back but i have to wait on the surgeons decision which wont be until the new year, all this depresses me so much, i hate feeling like this, my anti-depressants dont even seem to work anymore now.

Penguinrocks · Post by **Penguinrocks** » Sun Nov 27, 2005 4:37 pm

Which anti depressant are you on? Some make RLS worse.

kaz60969 · Post by **kaz60969** » Sun Nov 27, 2005 6:43 pm

Hi again Penguin, sorry ive taken a while to get back to you but my youngest wanted a shot of ma pooter. The anti-depressantd i am on are sSERTRALINE.

Penguinrocks · Post by **Penguinrocks** » Sun Nov 27, 2005 10:54 pm

look up where this anti depressant falls as in what catagory.
I was on Effexor XR and it was SO BAD for my RLS....

Not on it anylonger and am now on Wellbutrin.....doesn't "hurt" RLS ...

Penguin

Post by **ViewsAskew** » Mon Nov 28, 2005 3:41 am

Setraline is Zoloft. This is not an AD that is RLS-friendly and could be making your RLS worse. Check out this site for specifics: www.rlshelp.org. Go to the treatment page (link is on the left side of site), and then look for the Antidepressant information. This may give some more insight about what you might be able to take.

Hope this helps some. Hey Penguin, hope you are doing better.

Ann

kaz60969 · Post by **kaz60969** » Mon Nov 28, 2005 11:46 am

Hi there viewaaskew, thank you so much for your information i will check out the website you have suggested, thanks once again. Kaz xx

kaz60969 · Post by **kaz60969** » Mon Nov 28, 2005 11:48 am

Hi Penguin

Thank you for that info i will look up what u suggested then maybe mention it to my doctor. Do you find if you drink alot of coffee tht it makes ur RLS worse? I am really bad for drinking alot of coffee. Kaz xx

Penguinrocks · Post by **Penguinrocks** » Mon Nov 28, 2005 12:40 pm

Kaz, I have heard that caffiene (sp) isn't good at all for it.

I have one cup of coffee per day and drink things with no caffiene.

So, I'm not a good one to ask about this one...sorry.

Ann, thank you for your wishes....I wish I could post good news....but, alas.

Love
Penguin

Post by **ViewsAskew** » Mon Nov 28, 2005 3:48 pm

Kaz, since your new, you might also want to read the 'sticky' posts in the New to RLS section of the board. The Welcome Newcomers post has some great info about managing RLS, links to some of the most informative posts, etc. It's a personal mission I have - to make sure all of us get well-educated about RLS so we don't have to suffer any more than we already have. Since doctors aren't always all that informed about it, knowing all this can help ensure we get the best treatment we can.

Ann

kaz60969 · Post by **kaz60969** » Mon Nov 28, 2005 3:56 pm

Thank you so much for your advise Viewsaskew i will go there now and take a look.

Beckonwood · Post by **Beckonwood** » Tue Nov 29, 2005 1:44 am

Hi, this is my first posting therefore I am new to this site. I have had rls for about 10 years and it has progressively gotten worse. I used neurton which caused imflamation in my knees over a period of months. Used klonopin which helped for awhile then was on Sinemet which helped for about two years then I had lots of augmentation. The more I took the worse the re-occurance of symptoms got. Then I finally was put on mirapex and that has helped so much. I find that if I take it exactly at certain times of the day and night the symptoms rarely occur. When they do I take the smallest dose of percocet. I also have the symptoms in my arms at times. Now that is awful to say the least, because when you have them in your legs, you can at least get up and walk.

I have just recently seen commercials about RLS offering Requip as the medication to take. I wonder if anyone has used it yet.

Penguinrocks · Post by **Penguinrocks** » Tue Nov 29, 2005 4:52 pm

Hi Beckonwood,

Welcome to you as well!

I have tried Requip and the dosage that I needed to take to work on my RLS gave me week long migraines...so not on that anylonger.

Penguin

trevb · Post by **trevb** » Tue Nov 29, 2005 4:58 pm

hi beckonwood,
lots of people have used requip and found it really works, others dont find it helps. its a matter of chatting wth your dr and finding the best for you, i think that sometimes means giving things a go and seeing if it helps!

if you do try requip i think people have said its important to start on a low dose and gradually up it by small amounts! thats what other users here have found (i havent used it but others will comment on their experience im sure)