Docs And. Consultants say there is no cure, we just have to manage it. People W who don’t have it just don’t realise what it’s like.
I’m on ropinirole Gabapentin and the patch.ld like to get off one or more of them but but can’t face the thought of a worse night than I get now.i do have some better nights. If it starts having woken up I have a bath or shower even if it’s 2/3am and it does Stop so can go back to sleep
Sorry to hear that.
I presume you are covering all bases-- avoiding all triggers, ferritin tested ,food diary etc.
Good luck.
Hi Sweetdancer, I saw from a previous reply that you are on te Neupropatch (2mg?) and also 2mg ropinirole. I am happy for you that most of your nights are still covered. But - there's always a 'but'- do you realise that 1) you are taking a high dose of dopamine agonists (DA), as both Neupro and ropinirole are DAs, and 2) DA very often leads sooner or later to 'augmentation', that is a worsening of te symptoms. Please inform yourself about augmentation, e.g. start with the pinned post on top of the (web)page. Especially familiarise yourself with the telltale signs of augmentation (symptoms earlier in the day, in other body parts, worsening and returning sooner after you take your meds). If you suspect augmentation, don't increase your DAs any further, but decrease. Slowly.
Even if your current regime fits you sufficiently, you may want to try to reduce, e.g. by reducing the ropinirole. Ask for 0.25mg tablet, so you can try to reduce in small steps.
Thanks to LotteM who saved me asking what patch were you using. I'd look into that as you are on too much between the two dopamine agonists imho and they are likely causing things to be worse.
+1 with Madlegs1 too - make sure there are no other drugs complicating things - its all too easy to miss a glaring mistake!
I don't think docs say there's no cure because they don't care. It's because there is no cure and it must be very frustrating for them.
However, I do agree. It's the same for many conditions, the professionals helping us with them don't really appreciate what it's like unless they've had the condition themself.
hi ,
I was on gabapentin for a long while but the amount put me off it got to 6 x 600mg tablets per day it did help but I got myself off them but it came back.
just seen a pain consultant in Liverpool who is going to try me on pregabalin 77mg twice a day for a week then 150mg twice a day for a week then 75 mg over two weeks then to 225 and then300 twice a day if I can tolerate it,hope you find this helpful.
Hi - I have been tryng to manage the pain of rls for over 2 years now - I used to go to Pain management. I do remember that when I had an injection in my L4 nerve for a block it helped considerably. Atm I am trying to up my ferritin and reduce my dopamine. Yes, I have bad nights but some nights are much better. I take mainly ropinirole - 1 mg. is what I have got down to which is only effective if I take before my evening meal? The solpadol 30/500 is then my stand by in the night.
Sometimes, the pain is crushing ones spirit. Now, I am trying to get an appointment to get referred again to Pain Management team.
This forum definitely helpful for me. Keep positive.
Hi, Sweetdancer. I was on pramioexole for years (the equivalent to your ropinerole) and it helped for ages. Then my restless legs seemed to get worse, and I gradually increased the dose, which again seemed to help for a time, but when the symptoms broke through they were much more severe. My son was a professor of meteorology at Oxford, and I was ago, so I discussed it with him, and he suggested the gabapentin. It helped, but did not control things completely, and again I had to increase it gradually, until I was on 600mg the times daily. It then dawned on me, that the symptoms I was getting were because of the augmentation from the pramipexole, and I needed to get of it as soon as possible. Like you, I dreaded the worsening of symptoms, but I was determined to do it. I gradually reduced it , and had to put up with my whole body writhing throughout the evening and much of the night, but the lower the dose got, the better my symptoms were. In the end I took my last pill, and just stayed on the gabapentin. I then enjoyed the first time I was able to sit and relax for more than a minute in the daytime, and I no longer dreaded going to bed. I lie in bed amazed at how wonderful my legs feel! So, get off the ropinerole! Try to control your symptoms just with the gabapentin. 600mg twice a day is not dangerous, unless you get side effects from it, but the lowest dose you need to control your symptoms is the things to aim for.
Good luck, and do let me know how you get on!
Is it RLS? 
RLS
RLS
