Have just discovered this site this m... - Restless Legs Syn...

Restless Legs Syndrome

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Have just discovered this site this morning. Would like to share me experiences and meds.

Alicia67 profile image
18 Replies

I have had rls for many many years, it has got steadily worse over the last 5 years. I suffer a lot during the day as well as at night. I take pramipexole and also Gabapentin three times a day. They take a while to kick in but when they do I can hardly keep my eyes open, which isn't ideal during the day, so I try not to sit down and keep busy. I have put a lot of weight on and constantly want to eat. Until I read your blogs I hadn't connected it to the meds, thought it was me comfort eating and being greedy. Anyway glad I joined and look forward to reading your blogs.

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Alicia67
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18 Replies

hi Alicia , wont say welcome, as its not nice to have to be here, but you will get lots of advice here, and the odd giggle

Im taking Mirapexin same thing as you, just a different name really, i have the slow release one, so just the one pill at bedtime.

Ive had rls since i was around 19 years old, 63 now, not nice is it, yes the meds, most of them have a problem with weight gain, but what can we do, untill they find out how to cure us we are stuck

Alicia67 profile image
Alicia67 in reply to

Hi Niah thanks for your comment, its great to be in contact with fellow sufferers. I am nearly 68 and have had it since I was young but now it is getting unbearable and very distressing as you will know. Anyway nice to chat, hope to be in touch again soon.

nightdancer profile image
nightdancer

Gabapentin made me blow up like a whale literally. That is when I did most of "comfort eating" Mirapexin can cause impulsive behavior like gambling, shopping , AND eating. Not for all people, but it does, and the US's FDA has put a special new warning on Mirapexin and ropinerole (Requip) for impulsive and compulsive behaviors. Plus, when we are sleep deprived, we naturally crave sugary foods and foods high carbohydrates. so, you ahve a 3 way thing that could be hapenin with your eating and weight gain. sorry you are here, but very gald to meet you!

Donna/USA

Alicia67 profile image
Alicia67 in reply tonightdancer

Hi Donna, glad to meet you, and thanks for your comments. I think you are absolutely right. Taking the meds knocks me out and I can't function, and I do crave food all the time, especially chocolate, cakes etc.and the weight is piling on. In view of all the comments I have read I will see my GP re to see what changes I can make to my meds. Will let you know how I get on.

cherrytree profile image
cherrytree

I tried gabapentin, I was so hungry all the time! Didn't notice any impulsive behaviour (doubt my bank balance could have coped with anymore spending than I already do, ha ha), but it made me so drowsy and my arms felt like lead weights I couldn't get through my day, so although it did stop the restlessness I had to change to ropinirole.

Alicia67 profile image
Alicia67 in reply tocherrytree

Hi thats exactly how I feel, maybe I will see if I can change to ropinirole, thanks

Sunshine458 profile image
Sunshine458 in reply toAlicia67

Exactly what I did and I have been on ropinirole for years...plus colonzapam (Klonopin) ... I would not want my "worst enemy" to have RLS!! I have had withdrawals and at one time I was completely off the colonzapam but I have been on ropinirole (Requip) for 15-20 years. I too just found this website last week and I was having a real bad time and went to my GP ... I have been "prescribed" 1mg ropinirole up to 3x a day as needed and 1mg colonzapam the same way 3x a day as needed...I got along for a long time with 1mg of ropinirole in the morning and 1mg at bedtime and I only took ONE 1mg of colonzapam at bedtime...long story short it just wasn't helping me no matter what I took...my GP raised the ropinirole from 1mg to 2mg 3x day and raised the colonzapam from 1mg 3x a day to 1mg 4x a day!! I have only been taking a 2mg of ropinirole 2x a day (morning and night) and I only take 1mg of colonzapam at night (not 4 pills a day)...BUT after reading posts on here I am thinking that I should try the magnesium etc (natural instead of prescription)???? This is such a horrible way to have to live in 2016!!! I guess RLS doesn't seem like a big deal unless you have it??? If anyone has any suggestions I am open to try anything...I definitely do not want to put myself in to AUGMENTATION!!!

Thank you all for everything!!!

in reply tocherrytree

gabapentin didnt do a thing for me as far as rls was concerned, just helped nerve pain from sciatica

Tiredparent profile image
TiredparentRestless Leg Syndrome

Have you tried patches? They worked for me when my body had got used to the medication (augmentation).

Alicia67 profile image
Alicia67 in reply toTiredparent

Hi No I haven't tried patches - I have never heard about them before, can you give me any more info about them. Thanks

neupro patch was the only thing that didnt make me want to eat all the time

Alicia67 profile image
Alicia67 in reply to

Thanks niah I will look into this.

it neupro 24 hour slow release patch, you just stick them on they come in 1 , 2 , 4 , mg doses, hope that helps, they may make you itch a little but not so bad

Alicia67 profile image
Alicia67 in reply to

Thanks for the infor niah will definitely see my doctor re getting the patches.

if you speak to your doctor and you get them, i used to change mine at night, after my bath, before bad, keep you hand on them to make them stick, just for a few secs, then they seem to stick better

magggzzz profile image
magggzzz

I want to eat all the time and I'm trying to diet but it's not easy. I'd never connected it with my meds. My hubby however takes the maximum dose of gabapentin allowed and he's lost 8 stone. It was meds that caused the massive weight gain in the first place and he has to actually starve for days at a time in order to lose it and keep it off.

I take clonazepam and gabapentin. This does seem unusual in view of what I've read. I did try Requip for a time but it didn't seem to have any effect. Do you think it's worth me asking for the patches?

Gabapentin made me way to sleepy during the day, and didnt help my RLS, AND i put weight on in the month i was taking them...I came off them as i couldnt stand being so sleepy in the daytime...

I gained weight.. taking pramipexole ! It's the medicine 100% since I've

changed nothing as far as eating goes, increased my walks by 1/2 mile

every day..

Now when I can't sleep at night, I won't turn on the tv or radio, computer. I

force myself to clean, including laundry when I can't sleep...sometimes I

end up cooking a bunch of food for the next day.

Most of the time I have to walk around on my toes to "Tire out" my legs

that can't even stand still. I keep thinking of that extra 15 lbs that

magically appeared in such a short time, then I think that Pramixpexole

isn't working so I am thinking of asking my doctor to change a med or

I will just give it up.

I did the Gabapentin thing..it lessened any pains that I had related to RA

but it also made me numb and I felt like I had a hangover going on for

several hours after waking up. I felt too lazy to live a healthy life on it.

Karen USA..

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