Dont give up !

[Huntingleroy]

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

[amrob123]

That's fantastic news. Hopefully the buprenorphine continues to work its magic for you 😊

[LotteM]

What a journey and what determination. Chapeau. No side effects on the buprenorphine?

[Huntingleroy in reply to LotteM]

Bit of nausea and constipation , but I can live with that

[Joolsg]

💕

[Kejimkujik]

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.

[Ticki]

save my life too💜

[Kakally]

🤗

[Marlayna67]

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.

[Huntingleroy in reply to Marlayna67]

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

[Shir_11]

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.

[Huntingleroy in reply to Shir_11]

Ah its so lovely to hear of people finally finding peace in their lives

[TheDoDahMan]

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!

[Huntingleroy in reply to TheDoDahMan]

Its amazing

[Claire_lc]

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. ✨