This pain is unbareable

I'm 30 and have suffered with RLS since I was 10. I was only diagnosed 2 years ago after exhausting all other avenues of having epidurals etc as they thought it was sciatica. The pain at night is unbareable I saw a neurologist who upped my pregabalin however after the being up to the maximum dose it stopped working at all. I have been taking Ropinirole for a few months and am now up to the 2mg. It was beneficial at first even 0.25mg initially I'm off all pain killers and pregabalin however the pain is back. It's the unbareable twitching I spent all night walking around my flat last night then worked all day. I give myself cramp to try and stop the twitching and ease the pain which sometimes eventually works but then my legs ache all day.

Is there anything else after Ropinirole?? The neurologist only said pregabalin or Ropinirole. Also what's the best pain relief I didn't find codeine beneficial prior to the Ropinirole.

7 Replies

  • See my answer to previous post.

    Also search Tramadol and Oxycontin ( magnifying glass on top right)

    There are plenty of options ahead of you- don't despair. Educate your Dr or get anew one.

    Check out or rlsuk for good info to print and bring to the doctors.

    Good luck.

  • Hi madlegs1. Do they do oxucontin in the UK??

  • Heidi85 I am taking Targinact which is Oxycodone and Naloxone, (so if you crush it to inject it you wont get high otherwise the Naloxone does nothing), it is licensed in the UK and opioid use is part of the NICE guidelines:

    Hope you get help soon.

    And as madlegs1 said good info on:

  • Hi Heidi, sorry that you are having such a dreadful time just now. You mention pain and the twitching but do you have an urge to move your legs, an overwhelming urge to move sensations that cannot be ignored. Just curious as RLS and sciatica are so totally different symptoms I am a bit mystified lol . However the fact that you had a good response to the Ropinerole at the beginning does point to RLS. There's lots more treatments to try but whatever you do don't go increasing the Ropinerole as you are already on the maximum daily dose (it used to be 4mg but the experts now only recommend 2mg because of the increased risk of augmentation from the higher doses ).One painkiller many find helpful is Tramadol. Why have you stopped the Pregablin? Often a combination of meds works best for example Ropinerole, Pregablin and Tramadol. A better alternative to Ropinerole is the Neupro patch so ask your Neurologist about that. Come on here for support and let us know how you go on. .Pippins2 x

  • Hi Pippins2 the doctors thought it was sciatica because it only affected 1 leg, then they thought it was in my head. It wasn't until my GP retired that they questioned my diagnosis. Yes I kick out like I'm playing football my legs move on there own and the movement hurts. Stretching the legs help or walking around. The doctor took me off pregabalin as the Ropinirole was working and as it didn't work and I needed the Ropinirole they took me off the pregabalin.

    I'm going to ask to be referred back to the neurologist. My GP doesn't want to prescribe tramadol for me but I will ask again. I've had it for years and the Ropinirole worked so well but now it's come back it feels worse because I haven't had it for a couple of months

  • Thanks everyone I spoke to my GP today. He prescribed me metoclopramide as I was suffering with feeling sick apparently that counter acted the Ropinirole so I'm not taking metoclopramide ever again. You would have thought they would know that they can't be prescribed together, he my own GP so he prescribes the Ropinirole. Is there a website that has medication we should avoid taking as I'm going to need to take it with me every time I see my GP I haven't felt this much pain in months and it's made my mood so low as a result. Thank you so much everyone. Reading other people's posts early this morning made me not feel so alone it's a horrible thing to have

  • Heidi, look at the treatment page on this website it lists what meds to avoid which can make RLS worse.

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