RLS I call restless body syndrome

[Mistyone13]

I have had RLS now for about seven or eight years. It started after I was diagnosed with COPD. It has gotten so bad I feel it in my arms legs, and generally everywhere. The only thing that has worked for me so far is Ropinirole but I am on 5mgs 3x a day. Its gotten to the point Ropinerol does not always work. I need some advice on other things to try. I have tried Gabapentin and Trazadone with no luck Any suggestions?

[Joolsg]

Oh Mistyone,

15mg of Ropinirole a day is why you have all over body RLS.

Every single day we get a visitor to this site looking for help for the same reason as you and the answer is the same every time.

Ropinirole has caused AUGMENTATION.

Look it up in the search box, top right and you will come across lots of people like you with exactly the same problem.

You have to get off the ropinirole slowly, over months, reducing by 1mg every few weeks. You will need a strong opioid painkiller like tramadol or oxycontin to help during this time.

When down to the last 2mg , start taking alternative meds for RLS like pregabalin or gabapentin.

Make sure you are not on other meds that make RLS worse, like most anti histamines & anti Depressants.

Bganim was on a dose of 12mg and she came off it last year and is now in a much better place. Look her upon here.

Read all the posts on Augmentation, look up Nick-the-Turk as well- he went through withdrawal last year.

Lots of us have been through withdrawal and survived. It's horrible, but once through it, your RLS will revert to what it was before you started the Ropinirole ( mainly at night and just in the legs).

[LotteM in reply to Joolsg]

Thank you Jools. I was hoping you would respond.

Misty, jools forgot to mention to have your blood tested for iron, and specifically for the ferritin levels. For people with rls they have to be at least above 75mg/l, but above 100mg/l is better or more on the safe side.

[Lash65]

The only drug that stops rls for me is Tramadol.

[Mistyone13 in reply to Lash65]

I have tried Tramadol for sleep and it has never helped sleep or RLS. Sometimes I just don't get why some meds work and some don't for different people. I am glad it helps you though.

[Lash65]

Ohh ok. Yeah that's true. It helps some, hurts others and has no effect on others. I hope you find something that helps you. Rls is downright maddening!

[Mistyone13]

Isn't that the truth. It can make or break your sleep and/or day.

[jan_ET]

ivr got COPD as well

[Mistyone13 in reply to jan_ET]

That is not fun