Earlier this year I was contemplating suicide. I hadn’t planned anything, but I thought about it constantly. There didn’t seem to be any point going on without more than 2-3 hours of sleep, or even the ability to lie in bed and rest. After 11 years on Ropinirole, I’d successfully come off, but that still left me with unbearable RLS, which Pregabalin was unable to touch.
I thought I’d come to the end of the road, and no specialist I saw (and had paid hundreds of pounds for their expertise) had a solution. Some were clearly of the opinion that I needed therapy. One wrote that I might have Borderline Personality Disorder. The reality was that I was becoming increasingly depressed and hopeless due to sleep deprivation.
I’d convinced myself there was no magic bullet/pill/solution. In fact this is what most consultants told me.
Then, in the middle of a particularly terrible night back in January, I stumbled upon this forum, and everything started to change. First of all, here were people who understood what I was going through, and weren’t dismissing me as deluded or beyond help. But more than that, they knew about studies coming out of the US where, depressingly, RLS research is at least a decade ahead of ours in the UK. Studies that showed unequivocally that low-dose Buprenorphine and Methadone do not lead to addiction (any more than most pharmaceuticals can be said to lead to ‘dependence’), or even tolerance.
I spent the next few months trying to obtain a prescription for Buprenorphine. Many of you will have read my story on this forum, so I won’t repeat it here. Suffice to say that, in May, I took my first pill, and haven’t had more than a very occasional sign of RLS since. My life has done a 180 degree about turn, and I feel human again. I’m still struggling with insomnia, I think because my body has forgotten how to sleep in the decade I took Ropinirole. I didn’t realise I was augmenting from very early on, and just thought I’d developed insomnia because of the menopause. But at least now I can lie in bed all night and REST.
I will never cease to marvel at how wonderful it is to be RLS-free, and my heart goes out to everyone who is still battling with uneducated doctors and specialists who refuse to accept that patients might know more than they do on occasion. I will be thinking of you all this Christmas.
Next year I plan to continue writing letters to GPs and NHS neurologists. I’ve managed at least to generate some engagement from my local practice, even though I seem to be going round in circles between them, the NHS neurology team and the local formulary.
But really this post is to say thank you to Joolsg , without whose support and generosity I would still be in that hellish place. Jools and SueJohnson work tirelessly on this forum (along with several other wonderful people), and I’m sure I won’t be the only person wishing you both a peaceful Christmas. No one deserves it more.
Dipyridamole didn't work for me
Round 50?
Life after dopamine agonists
New here—coming off ropinirole 
Here's Dr Buchfuhrer's response to Temgesic use
