40 years a sufferer

[scamps]

Hi there all, I have lurked on this forum for ages but not posted much.

I am 67, live in the UK and suffered from RLS since I was in my 20s. For years I didn't know what it was but was able to sway it off with self-help procedures such as hot baths, massage and rocking. These methods were not enough after a while. Then I looked on the internet and discovered I had classic symptoms of RLS. At that time there was nothing licensed for it in the UK and the only thing that gave me any relief was codeine. I lived in Spain at this time and you could buy it over the counter, but I didn't like to take it too often for obvious reasons.

Roll forward to 2007, my symptoms were so bad I was getting no sleep for days at a time and my quality of life was suffering greatly. Then I discovered that ropinirole had been licensed. I saw my GP in England and he prescribed it.

The relief was indescribable and although I had to up the dose, I was on it for eight years before getting much in the way of augmentation,but then it became less effective and I was back to getting no sleep again.

I went to see a neurologist who prescribed gabapentin to take with the ropinirole (and gave me a formal diagnosis, the first time I had had one!) and I have now been able to cut back my ropinirole to 2mg from 3mg and also take 800mg gabapentin. I also take iron and vitamin D because a deficiency was found in these things and they can have an effect on RLS.

I am at the moment stable but the medication is still under review, with a view to coming off the ropinirole altogether and just having the gabapentin.

Hope this helps someone.

[involuntarydancer]

Thank you for posting. It sounds like you have been to hell and back with your RLS and I am glad that you have found something that is working for you. Sadly, as your experience shows, the treatment of the condition is tricky and involved. It may be that you would ultimately benefit from eliminating ropinerole. Given that codeine worked for you in the past, at least you know that, if it comes down to it, opiates are likely to help you also. As you will have seen from this forum, many, many people use tramadol as a treatment.

[beady3]

Nice to hear your story do you find the gabapentin help you ,I am not having much luck nowwith my med in fact I don’t know if it’s working at all , not much sleep and a lot of pain. I am on the patch 2mg 100 mg tramodol and 50mg gabapentin.

[marsha2306 in reply to beady3]

only 50 mg. gabapentin?

[Graham3196]

I will PM a list of things that have helped some people in this forum. You have probably tried most of them but something there might help.

[Twitcher]

Try a Magnesium supplement too taken with iron it is almost a miracle supp for several of us here! I've had it since childhood and once stood for the whole of a 13 hour flight. Avoided medication and like you tried every other kind of option I could find. Discovered this complex called Migraine Stop and started taking it in August not a single episode since!!!!!!

[Steve2777]

Please! get off the Roprinirole. It works well at first, then makes things Worse and has nasty side effects that I won't go into. Trazadone has helped me a lot. I take it before bed along with a hot shower and right now things are pretty manageable. I also take Wellbutrin in the morning along with a quality multi vitamin. Rigorous exercise and good hydration is also very important. Any alcohol before bed makes symptoms worse for me. Hoping to try cbd oil. Best. Good luck.

[connie50]

thanks scamp I have had RLS know it must be going on 10yrs & I still cant find the right combination. I have literary tried all the D/A MEDS infact everything that people put on this forum I've tried. there is no solution what's so ever for RLS.believe me I have tried everything going, everyone of us is different, I could open a chemist shop with the things I've bought. But up till know I cannot find the right combi.I have had augmentation twice I have weaned of D/A twice & know my GP says the tramadol isn't working for me anymore. Can anyone please tell me what I can take instead of tramadol? Another product to try.

[Nightingale-5]

I didn't find out about the dangers of Ropinerol until it was too late. Each time I saw the Neurologist and said I was no better the dose increased until I am now over the safe prescribed dose. I am very slowly reducing the dose and relying on my own Magnesium oil mix and Magnesium tablets. i had two ferritin infusions which helped but I had no follow up from that.

[Nannarls]

I had full blood work done and nothing wrong showed up. Drs here don't prescribe meds for rls and I've had to do my own research. Ive had rls since I was a child and Im 59 now. It certainly affects the quality of life and you have my sympathies.