Restless Legs

[Anniethegrannie]

Hi. I have never written on any forum before but i am sooooo weary of this RLS. I have suffered from this condition for over 10 years now and have tried various medications. I am now taking ropinorole. It doesnt work. The side effects are odd, constant yawning for an hour or so. My sleep is interrupted. I feel Doctors couldn't care less. I walk up to four miles a day and try to keep active. When will there be solution? Sorry for this moaning but I know you will understand!

[Hidden]

I fully understand and so will all the others on this site. One day an answer will be found if we all keep plugging away and trying to raise our profile. My latest idea is to try to get a journalist from the Sunday Times ( UK ) to run a 'life in the day' for one of our sufferers - not me though, sorry! Wouldn't like to appear in print but someone might. The British medical Journal also used to run personal experiences of drs - that might get some sort of message through. I don't like publicity for myself though!

[Madlegs1]

RLS is such a complex subject, and so personal, that it might be best to spend a bit of time reading through the last few months posts here and on the QnA pages of

rlshelp.org

just the pages after about p 100.

That site is managed by Dr Buchfurer, a world authority on rls.

My predictive text tried to say"wonderful" instead of "world"

Unusually, I'm inclined to agree with my PT.

Cheers.

[Pippins2]

Hi what dose of Ropinerole are you taking? Have you had to keep increasing the dose? Did it work at first? X

[Anniethegrannie]

hi, I'm taking 2mg a day. I have to take 1mg at around 5pm and the other at around 9pm. I have to split the dosage as I have really annoying side effects and they are lessened if I split the dose. They don't work most of the time but the symptoms are lessened. I have tried gabapentin to no avail. I just feel Doctors treat RLS as a minor irritation for sufferers, although on the other hand there is no known cure. I don't know if I can increase dosage I will have to see my Doctor, however getting an appointment these days is an ordeal in itself! Thank you for your concern. xx

[Pippins2 in reply to Anniethegrannie]

Hi no definitely don't increase the Ropinerole. Put augmentation into search as there's a good chance this is the problem. See if your doctor will prescribe you some Codeine or Tramadol to help you wean down and try Pregablin too x

[Graham3196]

I have sent a list of things that might help in a private message

Cheers

Graham

[involuntarydancer]

You are absolutely correct: rls is a devastating condition that is treated as a minor irritant by the vast majority of doctors.

I am sorry to hear that the ropinerole is causing you problems. Having failed, for one reason or another, to respond positively to any of the usual prescription treatments, I have found that my rls responds well to me taking a number of drugs, each at a low dose.

I wonder would it be worth your while reducing your ropinerole somewhat and reintroducing a small dose of gabapentin or trying pregabalin which can be more effective for some people. You could possibly also get a prescription for tramadol to use for breakthrough symptoms and to tweak your system.

I would say that a lot of experimentation is required to find a system that works.

It is also most important to ensure that your iron levels are high so get a serum ferritin test if you haven’t already and make sure they give you the actual figure as ‘normal’ is different for rls sufferers than for the general public. We need our levels to be over 100 and ‘normal’ can be as low as 20.

Vigilance in diet can also be helpful. Many people find their rls responds to eliminating dairy, gluten and sugar. I find generally that the more simple and plant based my diet, the better my symptoms but it is hard to stick to. It is also helpful not to eat too much in the evenings.

[involuntarydancer]

I meant to say that in your shoes I would absolutely NOT increase the dose of ropinerole even if that is what your GP suggests.

Increasing from your current dose will lead to problems down the line with augmentation. Many (most) doctors are not aware of this and will happily prescribe an increased dose which inevitably causes awful suffering eventually.

[darena]

Your story is exactly like mine. One thing I discovered was that the more I walked the worse my symptoms were. When I cut it down it helped a lot. However I am now pain free for the first time in 9 years. The miracle for me was the Relaxis pad. Please give it a try. It is expensive but you can rent it . The folks at Relaxis are extremely helpful and will guide you for the first couple of weeks. I bought a pad in February. I used it exactly as they suggested and after the first two weeks my pain was gone completely. I only need to use the pad once every week or so and I have my life back. Good luck! Daren