Can’t xope

[Lucyjane29]

Hey fellow suffers, not been on here for a while I’ve been so busy with work and life in general so thought I would update you all...

Gone from 6mg of ropinorole down to 1.5mg a day now. It’s been a very long and slow process and each move down is horrendous for a few weeks, it settles then I have to move down again. Right now I can’t ever seem imagine being free from this awful feeling.

I’ve been taking pragabalin for months 200mg a day.

I can’t sit and relax like normal people over Xmas with a nice film etc.

Hope you are all coping best you can. Happy new year xx

[Smiler53]

Hi Lucyjane,

You’ve done so well getting down to that level of Ropinarol. I hope it won’t be too long before you are off it all together and the Pregablin will kick in properly.

I know exactly how you feel not being able to sit and watch a film etc. I used to get myself in a right old two and eight at the thought of going to the cinema, theatre or out for dinner, knowing that I would be forever jiggling my legs or constantly getting up to walk around or making the excuse of going to the loo whether I wanted to go or not! I wouldn’t go to the theatre if I couldn’t book the back row aisle seat - nightmare!

Wishing you a Happy and better New Year. X

[Lucyjane29 in reply to Smiler53]

Hi smiler53

It’s so awful isn’t it, when your so tired and just want to relax but can’t because your legs won’t allow it 😩

I just replied to Pam that I’m just hoping and praying that the pregabalin will kick in after I’m off the ropinorole and that I will be able to cope in that time.

I also plan to see a acupuncture therapist and homeopath therapist.

You know as well as me we will do anything to be feee from this.

Here’s to a rls free 2019 x

[Smiler53 in reply to Lucyjane29]

I’m on OxyContin 5mg am and 10mg pm - which stopped my RLS in It’s tracks (would prefer 10mg x 2 but beggars can’t be choosers can they!) Then a sleep clinic Dr added in 75mg Pregabalin to help me sleep as I was so sleep deprived I was falling over, hallucinating and doing silly things in the night without knowing it - very scary for me and my husband! Wishing you all the best. X

[Pam34]

Hi Lucyjane

Nice to hear from you again and a big well done for getting so far. You were on a ridiculous amount and to get down to 1.5 is brilliant!

The Pregabalin won’t help at all while you are withdrawing from ropinirole, in fact it could be a few weeks after your last dose of ropinirole that you notice any effect. I know you have been taking codeine to help but it really isn’t strong enough. Is there any reason you can’t take Tramadol or something similar? Withdrawal feelings will still be intense but that will go some way to helping.

You will get there, it seems impossible at the moment but many of us have been there and believe me, there is life after ropinirole and it’s so much sweeter!

Keep in touch

Pam

[Lucyjane29 in reply to Pam34]

Ah Hi Pam, thank you responding!

I did try tramadol but it woke me up and I spent most of the night awake.

I have been struggling recently and just hope and pray that once I am off the ropinorole completely I will be able to cope without anything until the pragabalin kicks in? (If it does) how are you doing? X

[Pam34 in reply to Lucyjane29]

I’m good thanks. 4 mths on 150mg of Pregabalin and about 80% coverage I’d say, which I’m happy with. To strive for 100% is being overly optimistic I think!

Tramadol also kept me awake but it allowed me to lie in bed. I’d found I’d rather lie awake but calm than have to pace the floors day and night. In the last bit of withdrawal even to be able to lie down for an hour at night was a miracle! At the moment you are neither sleeping or resting, at least Tramadol would help towards one of those. It’s not perfect but it’s better than the alternative. Maybe worth another try?

But, seriously, well done and look forward to a new year of possibilities once off this nightmare drug.

Happy new year 🥳