end of my tether😩: hi team Is it... - Restless Legs Syn...

Restless Legs Syndrome

22,313 members•16,370 posts

end of my tether😩

Bluejan profile image
Bluejan
•5 Replies

hi team

Is it possible to wake up with augmentation symptoms and for them to last all day till my Ropinirole kicks in at night? I am utterly exhausted, can’t sit down for longer than a few minutes before I need to get up and move about. I had my 4th spinal fusion surgery in September and was convinced these nerve type pains were down to that but even tho surgery was successful they are still there driving me mad. I already take Pregabalin 150mg twice a day prescribed for nerve pain 12 months ago but am utterly confused as to which problems are due to my back and which are from the augmentation. I have an appointment with my GP on Wednesday and need some advice please , feel like I’m losing my mind! (Currently take 3mg Ropinirole at night)

Written by
Bluejan profile image
Bluejan
To view profiles and participate in discussions please or .
5 Replies
•
Joolsg profile image
Joolsg

Yes.It's why I joined this forum 8 years ago and was advised to get off Ropinirole. And the RLS moved to my hands, back and face.

Like you, I was on 4mg Ropinirole and augmentation was very severe.

I am now completely free of RLS. No symptoms night or day. I take 0.4mg Buprenorphine.

Here's the withdrawal schedule from RLS-UK website.

Show to your GP and ask for low dose opioids ( codeine, tramadol or oxycodone) to help get you through the brutal withdrawal.

And show your GP the iron therapy page as well.

rls-uk.org/useful-resources

Bluejan profile image
Bluejan• in reply toJoolsg

Thank you so much Jools, I already have a regular px for Co-Dydramol so maybe I’ll start taking the max daily dose and see if that helps

Joolsg profile image
Joolsg• in reply toBluejan

It won't help until you're off Ropinirole.Sadly, until you get off dopamine agonists, adding other meds simply masks the increased RLS for a short time. The D1 dopamine receptors are up regulated and become hyper excited. That's what causes the daytime symptoms and the increased severity.

I was in denial for about 4 years. I would sleep all night once I took my Ropinirole. But I couldn't sit in car or watch TV.

Getting off Ropinirole stopped all that.

The co dydramol will help as you reduce.

Get normal release Ropinirole in 2mg and 4x 0.25mg doses. Explain to pharmacy that you need the smaller dose pills to start reducing Ropinirole.

Drop 0.25mg every 2 weeks. Symptoms will flare up at each reduction so take the co dyramol.

And read all the posts from the last few days. You'll see it's very, very common.

Bluejan profile image
Bluejan• in reply toJoolsg

Great advice, can’t thank you enough. I’m due to start back at work next week and dreading trying to do the job with little sleep and achy sore jumpy legs all day.

Joolsg profile image
Joolsg

As you're in Merseyside, avoid the Walton Centre as they still prescribe dopamine agonists and will probably try to switch you from Ropinirole to another dopamine agonist. That will just prolong the agony.If you can see a specialist privately (as waiting lists are around a year) see Dr Chris Murphy at Salford hospital. He is familiar with augmentation and will prescribe iron infusions and low dose opioids if necessary.

Not what you're looking for?

You may also like...

New here—coming off ropinirole

Found this forum at 4am…you all know the drill! Diagnosed with RLS through a sleep study (performed...
Frustrated-RLS profile image
•

Life after Ropinirole.

Hello. I've had RLS my whole life. 30 years ago I was put on prozac for depression. My RLS got a...
Birdland profile image
•

From Ropinirole to Pramipexole

Hi I am new here. My Doctor is changing my meds from Ropinirole 2mg at night and 2 .25's during the...
debbierupp profile image
•

Made it through the "holiday" (many thanks for your support) - what now?

I am on day 40 of my rehab, first 15 days of a "holiday" from Pram (I hate the term because the...
dontsleepmuch profile image
•

Changing my Medication

Hello I would be grateful for advice. Have been on Ropinirole for 2years coming down from...
99Katzen profile image
•

Moderation team

Kaarina profile image
KaarinaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.