For everyone that has followed me there seems to be a happy ending. Following 21 yrs of various dopamine agonists for chronic Rls I realised that augmentation was off the scale. Consultant poo pooed that theory and upped my dose again to 6mgs. Yes it helped albeit for a short time. I went on holiday and realised my legs were jiggling nearly 24 hrs a day and often my arms. I had very little sleep. I made the decision to start withdrawing with brilliant advise from Sue and Jules. It was a hellish , brutal long journey and yes I considered suicide many times. I fell asleep driving twice which terrified me. I would have 3 or 4 hot baths at night to try and settle my legs but nothing really helped. My husband was amazing but was also getting exhausted so for 8 months we had our own rooms, this way he got some sleep and it lifted some pressure off me. I tried Gabapentin , Dyperidamole, Codeine and Targinact at some point yet nothing seemed to help. Once off Ropin and still taking just Gabapentin ,B12 and iron I then went privately to see a neurologist in April and he agreed to prescribe Buprenorphine 0.4 mgs sl tablets. From night 2 my Rls has gone 100% , Im still in total shock ! I had to move Gp's , in fact it took me until this week to persuade my new Gp to prescribe it but he has and will review in a year. So to all you sufferers , dont give up , there is light at the end of the tunnel . One final word to Sue and Jules , thank you from the bottom of my heart ....you saved my life
Dont give up !: For everyone that has... - Restless Legs Syn...
Dont give up !
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That's fantastic news. Hopefully the buprenorphine continues to work its magic for you 😊
What a journey and what determination. Chapeau. No side effects on the buprenorphine?
wow what a journey, and congratulations you made it. Thank you for sharing as I know it helps those of us still going through it or struggling with trying to follow doctors orders and getting f@&$/! That it is possible and there is a better way to manage rls. Good to read the outcomes of those like you who have been in the trenches and are back out on top.
save my life too💜
oh geez this actually made me cry. I am so happy to read this and feel this every step of the way. Buprenorphine is a total game changer and Sue and Jools are indeed life savers.
I hope they were tears of joy ! I never , ever, thought I would find relief from Rls. It has changed my life so much . Just the simple pleasures like watching Tv or reading a book without constantly feeling the need to move walk. My very first Gp said " learn to live with it and gave me quinine ! " I hope his Dr skills improved !Take care
This site saved my life after 40 years of misery. Kester gave me so much support and helped me find the right doctor to speak to. I have been on Buprenophine for over 4 years now and like you say, the only disadvantage is the constipation which can be treated. All the best wishes to you.
Hopefully your sojourn will somehow convince more doctors to display the courage and knowledge to consider prescribing low-dose opioid therapy to those suffering from refractory RLS. Dr Buchfuhrer performed the same miracle for me, but with low-dose methadone. Ain't it great to finally find a willing prescriber!
Beautifully said. I'm so happy you've found the relief you deserve. It was worth the fight. And yes, Jools and Sue have given us our lives back. ✨