I AM NEW HERE BUT OLD AND I HAVE HAD RLS FOREVER!!

[Sunshine458]

I am brand new here and I am so thankful that I found you all. I have had RLS for as long as I can remember and I have tried EVERYTHING ... I am a complete mess!! I went to my Doctor yesterday...I am currently taking 1mg. Requip up to 3x a day (if needed) and recently I seem to need it 3x a day and I am still fighting with my legs and it is pretty much my whole body when it hits me bad and lately it has been real bad. I also have prescription for 1mg. colonzapam up to 3x a day as needed. I mainly just take one 1mg. colonzapam at night but sometimes if I am doing bad I take one during the day or even in the middle of the night as a last resort.

I was all built up when I went to the Doctor yesterday because I had been reading a lot of your posts and I had a big list of questions and things I wanted to know if I could try different. I asked about Magnesium and the answer I got was "that will give you diarrhea and it isn't good for you to start mixing a bunch of things with your prescription drugs"!! I asked about the "Patch" and the Doctor said "not familiar with that and it would be best to stick to what I am used to taking".

Long story short ... I now am supposed to take 2mg of Requip 3x a day (instead of the 1mg) and 1mg colonzapam 4x a day (instead of the 1mg 3x a day) ... I have been taking Amitriptyline 10mg at bedtime for couple of years so I did say that "I want to get off of that pill" so I am supposed to cut it in half for one week and then quarter it for one week then quit taking it altogether.

Basically I am worried now after reading all your great information that I am going to have augmentation from too much Requip??? When I asked my Doctor said "no you will be fine you are just not getting enough of it in your system to help you like it should"????

Does ANYONE know if Magnesium would help to take it with the Requip?? If so ... What kind of Magnesium do I take and how much how often ... I do get diarrhea very easy!!

Thank you in advance for any input that anyone can give me. I am at my wits end.

Requip does help me when I take a pill it seems to help within about 30-40 minutes. I am just worried that it is going to work the opposite if I take higher mg.??

I will say one thing to anyone that is not familiar with Requip...the warning that "compulsive gambling or spending money is a side effect" is VERY TRUE!! I spend money then worry to death and stress over how I am going to pay for it and I feel so guilty for buying it I don't enjoy it!! CRAZY!!!

THANKS SO MUCH FOR HAVING THIS SITE...IT IS GREAT!!!

[Joolsg]

Hi Sunshine,

It's 5.44 am here in UK and I've been up since 2. I'm still going through Dopamine withdrawal. I'm not as knowledgeable as all the others on here but I do know that the amitriptyline will make your RLS 1000% worse so you're doing the right thing getting off it. Also, Requip will eventually give you augmentation but possibly if you get off amitriptyline first, the bad RLS may stop. I've been taking Magnesium threonate as all the other types gave me diarrhoea, but doesn't seem to help me anyway. If the RLS has moved to your whole body and during the daytime, sounds like you definitely have augmentation. That is exactly what happened to me. Now I am nearly through withdrawal from Ropinirole (UK name of Requip), I still get the jumpy legs and back but it has stopped affecting my face and arms and the jerks are nowhere near as violent, although still enough to wake me up. Maybe you should get a second opinion from another neurologist. I hope you find a doctor who can help, but in the meantime look up AUGMENTATION on this site.

Take Care,

Jools

[Hidden]

So sorry you are having such a difficult time. People who haven't had restless legs just don't understand how debilitating it is, including many doctors! Apparently magnesium oil is better than tablets. You just rub this into your skin and it absorbs into your body. An alternative is putting Epsom salts into your bath. Good luck.

[silleecharle]

Hi sunshine458

It sounds like ur experiencing augmentation, i wud advise you go back and try a different gp, tell them how it's affecting u mentally and ask for a review of ur meds, i was on so many(25 daily) that it was hard to determine which was aggravating my rls, i wud get it all over my body, like a current running thru my body, in the end i asked to b weaned off all of them which has eased the endless nites of pacing the floor but I find I still have this current running thru my whole body, the best way to describe mine is the feeling u get if u lean on something vibrating like the spin on the washing machine, atm I'm on rophinerole but like u it's not always working, iv tried magnesium spray but found it didn't work but try an epsom salt hot bath before bed, also if u r low on iron which I am can cause rls, hav u had ur levels tested, unfortunately it can also b hereditary, did it affect anyone else in ur family, sending hugs, it's a horrible disease x

[Hidden]

Actually, the chemist would be a great person to talk to re: meds. I find that they understand interactions and side effects much better than GPs do!! I hope you get the help you need!!!! ((hugs))

[beady3]

Sunshine so sorry you are in trouble with the dreaded rls,I can only tell you how I was when on Requip I started on 2mg and fineshed up on 8mg I was in such pain the worst ever why would a doctor give me such a high does because he doesn't know anything about it,yes the made me buy things and then I would think why the Requip I blame,I think you need to change you doc, I am on the patch and 2 Tramodol and I am doing fine 9 hrs sleep a night it hasn't always been like that though, read all you can then go back stick up for yourself,yes I have magnesium salts but I have to be careful the do give you the trots. Good luck x

[Madlegs1]

+all the above posts.

I'll be straight with you.

You have augmentation. Your doctor is ignorant about rls and its treatment.

Change doctor or educate him if you think he's capable of change.

Really sorry you find yourself in this situation. There is a solution but it is a hard road ahead of you. You can do it.

Cheers.

[Denisefs]

I was on Requip for a few years but then it stopped working. I went on Mirapex (which is similar) for another five years and now it's stopping working. My MD said there's one more med that we might try or go back to Requip again. It's starting to scare me, since my RLS is starting to act up earlier in the day, lately. I agree with your stated side effects.

[Sunshine458]

I want to thank each one of you for replying to my post. It blows my mind how many of us are fighting the same battle with RLS and all of our symptoms and stories are so familiar and in 2016 there is not SOMETHING that could FIX US!!!

We are not asking for "a trip to the moon"!!! We just want RELIEF FROM THIS HORRIBLE AFFLICTION.

I cannot begin to express how thankful I am that I have found this site!! After so many years of battling this mainly alone I feel that I have found that I am just one of many that feel the same as I do.

God Bless You All

[Vichic]

I can relate to a lot of what you're saying. I do take Magnesium as it's supposed to help but I don't know if it does much really, everyone is different though. It sounds to me that your Dr might not be very supportive of you , or very well informed on the condition. In saying that I think most GPs don't know a lot about it. I wish more research would be done into this horrid thing.

[Artsy]

Hi I took requip when I first started my medicine 15 years ago. I now take meripex extended release for my medicine. I have been trying to get off of all of the medicine it's very hard to do. I use to take 11/2 and a little more of meripex in the regular dose not the extended and didn't seem to help me and would make me feel bad. Now that I take the extended release.75 in meripex I feel so much better and I have RLS bad and started this when I was 8 years old. I feel for you I take a vitamin with this it has zinc magnesium and calcium in nature made I like those. I know what you mean about the spending money yes been there I try to notice when I feel like that and stop. One other thing is I feel like I'm so much better taking less medicine on the extended release that I feel free from the dependence of this medicine and hopefully I can stop it altogether it's hard but slowly working for that I'm calling my dr today to get .50 mg meripex extended release to see how I do on that I'm excited to see and I will let everyone know. The key to me is a great diet exercise and eat less for dinner no breads or heavy meals late and less medicine if you can I get so excited for the day I can say yes I can do this without medicine I love this group and I hope we can all help each other means so much because RLS is not easy to have. I love sharing how I feel about RLS.

[Sunshine458]

I agree with you that I wish I could quit depending on drugs to be able to function...it is such a helpless feeling!! I am supposed to go back to my doctor in a month (3 weeks now)...I would like to maybe try the Extended Release Miripex instead of staying on higher mg of Requip because I am scared that I am going to have augmentation after reading posts on here!!

Can someone tell me "do you take the magnesium and calcium etc while you are on the "prescription drugs"?? I don't know if I should start taking vitamin stuff etc while I am taking Requip and Klonopin because I am afraid that I will over do it or else I won't know what is helping me or makes me worse????

Oh my this is such a struggle!! It amazes me that there is not something that would work for all of us!! How can so many people suffer from the same symptoms and cannot come up with a solution in 2016???? PLUS so many of us on here have all been dealing with this for years and years???

I used to be very frugal with money and now I am horrible!!! I order things from QVC in the middle of the night!!LOL. I am ashamed to admit the money I have wasted and I am so impulsive that it just makes me sick to my stomach to think about it!! Boxes come in the mail and I have no idea what is even in them!! That is a SIN!!!! I am not stingy though...I buy for all my grandkids and kids even neighbors and the UPS man knows me well...I could end up in the POOR HOUSE if something doesn't kick in and get me off these drugs!! I buy stuff then I feel guilty and return it constantly...I am serious when I say that I am ashamed ... I am 66 years old ...

Sorry that I have rambled on so long...thank you all so much just for being here!!

[Artsy in reply to Sunshine458]

I understand don't feel bad or guilty because you just want to feel better. I'm going to the neurologist tomorrow and telling him about what I'm taking with this extended release Meripex and telling him how much better I feel. I will let everyone know tomorrow what he tells me. All I know it's doing great for me and I have tried everything and I have been able to go down in strength and I'm so proud of myself. I hope you feel better and don't feel bad about anything. 😊 I'm going to ask for a lower dose .50. Which I'm taking.75 right now. He can give me both so I can work it out myself because I know my body better than anyone.