Restless Legs Syndrome (RLS) Discussion Board

I’m on 1.00 of Ropinerol and 900 mg. Of Gabapentin and have augmented on both. I was on 1.25 of Ropinerol and 1200 of Gabapentin but cut out my 1 pm dose. My afternoons have been tough until I get to my 4 pm dose.

I’m experiencing crushing fatigue staring about 11 AM. Also feel kinda weak. I’m ok I’m the mornings but am wasted in the afternoon. Has anyone else experienced debilitating fatigue from taking Ropinerole?

Thanks,

Mac

I was on ropinerole for many years and was unaware of fatigue other than possibly from lack of sleep. I weaned off it two years ago. Bear in mind we all react differently to medications.
Your dosage is still high. 1mg is considered the max daily dose by respected RLS experts regardless of what the official guidelines may be. How long have you been taking ropinerole and did you start low and gradually increase.
Augmentation from gabapentin is unlikely. Also gabapentin is best taken twice daily to keep your level as equal as possible to avoid a withdrawal issue.

Thanks for the informative reply.
Did you go to methadone after weaning yourself off Ropinerole?

While taking ropinerole I was also taking Codeine.
As I reduced the ropinerole I was already taking pregabalin for another issue and as the ropinerole reduced the pregabalin was increased.
I apologise that I was not more informative in my previous post.

No, your previous post was very helpful. I think poor sleep may be the cause of the fatigue.

How much Ropinerol were you on? Has the pregabalin and codeine handled your RLS for the most part? If I battle of Ropinerol I’m looking for something other than opioids to use.

Thanks again for taking the time to reply. This forum is a lifesaver.

The Codeine and Pregabalin are very effective at handling my rl S very well. However I am at the daily max for both and am fortunate that my recently acquired Movement Disorder Consultant supports the use of opioids for treatment and has advised my GP of this.

At the peak and for a long time I was taking 5mg ropinerole daily. Way beyond what was sensible. When I first started around 2006 the max dose was determined by the manufacturer to be 4mg. . Somehow I ended up at 5mg. Over the years the RLS experts realised that this dose was leading to augmentation and that 1mg should be the daily max.
After several failed attempts at weaning off and with much encouragement and support from the members here I eventually began a very slow weaning process. They supported my regular posts and kept me uplifted. Much slower than is generally attempted but I knew this was what would suit me best. It took 10 months and was not very difficult because I had the Codeine and Pregabalin.
It was a wonderful day when I took my final ropinerole.
My GP hadn't a clue but supported my plan.
At a time I had been going to work not having slept at all, or having maybe only 3 hours. My sleep is now much better but not perfect. It happens in several shifts but being now retired I can use the morning to make up a few hours.
I'm sorry opioids are not an option for you as they really do work.

Thanks for the very helpful reply. I’ve been on Ropinerole and Gabapentin about five years and have augmented badly. I’m going to get off all DA’S so am trying to decide whether or not to go for an infusion [ my ferretin is 64, start methodone or bupenophine.

My GP doctor had a fit when I mentioned methadone. Like asking for gold leaf!!
To wean off a DA you need a plan. To come off over a few weeks or to wean more slowly. And you'll need to consider, discuss with your doctor, what other medication support will help you do this. Your gabapentin will be unlikely to be sufficient.

Thanks again for your excellent input.

My thought is to come off slowly and start on buprenorphine ramping that up. Do you think I’ll need something besides the opioid to come off the DA? Currently I take 1.25 of Ropinerole and 1200 of Gabapentin.

Where did you get your movement Disorder Consultant? Sounds like I need one in my corner. Thanks

I think that your gabapentin is 6 x equivalent of my pregab so 1200 gaba = 200 pregab. I take 600 pregab daily. I am actually prescribed it for diabetic sensory issues in my feet and legs in particular burning and extreme sensitivity. Socks can feel like sandpaper against my skin. It's a bonus that it also helps rls.
I also take approximately 15mg Codeine x 12 pills daily. 5 pills at 5pm, 6 at 10pm, and 2 pills to play with.

I would doubt that gaba would be enough to deal with your coming off ropinerole. I think you would benefit from the opioid. Please note I speak only from personal experience and do not speak on behalf of the RLS Foundation. I have no medical training.

Having suffered from rlS for approx 40 years it was only last year that my then new GP referred me to the Movement Disorder Clinic at the major hospital in Belfast. I had been unaware of its existence as clearly had been my previous doctors. Unless it was newly formed. For the first time I spoke with a medic who actually got it and said she'd have my back if my GP ever balked over appropriate meds. I actually have an follow up appointment in October.... At their instigation. How good is that. But I don't want to get smug.
So far, so good.

Thanks for your help. My neurologist has bailed on me after having led me down the road to augmentation. Consequently looking for a new neurologist who “gets it” and will prescribe opiods