Back again, again!

[Danni54]

Hi all. I really hope that you are all coping with this horrible ' Syndrome '! I was wondering whether anybody had found that the 100mg Slow Release Tapentadol had helped them? My Dr. put me on them twice a day but they didn't help me at all so I am now taking 50 mg Quick Release 4 times a day though sometimes I have to take 2 at a time. The Dr.s are pushing hard for me to take Ropinirole despite the information I have given them and I keep telling them that I am too scared! It has been hinted that they might refuse to treat me if I refuse to take them! I can't change Surgeries as the others are all full . The Tapentadol helps the RLS but not all the time and when it's bad , it's now happening to my arms and hands. I had to get up 4 times last night and I'm so tired. I , also, told the Dr. that Buprenorphine Sublingual worked better but that was ignored! I am so sick of fighting them! Sorry to moan again but I can't remember when I last had a goodish day! Thinking of you all. Please take care.

[SueJohnson]

That's horrible that they are hinting they won't treat you if you refuse ropinirole. Can they do that? (I'm in the US) And ignoring the fact you've told them the buprenorphine worked.

[Joolsg]

Danni,That is utterly terrifying.

RLS-UK, the charity that runs this website is currently trying to get dopamine agonists used in end of life/last resort scenarios.

Please ask your doctors to look at RLS-UK website.

It is also now essential that you see a neurologist who understands this disease.

There are very few here in the UK.

I also think you have to mention legal action to your doctors if they try to force you to try dopamine agonists.

There have now been hundreds of successful legal cases in the last few years against UK GPs and neurologists for failure to warn patients of the VERY HIGH rates of Impulse Control Disorder.

RLS-UK August 2024 survey of 3722 RLS patients showed 11% taking dopaminev were showing signs of ICD.

There are now talks of bringing a legal case against UK doctors for negligence/breach of duty for failure to warn of the very high rates of Augmentation. The NICE cks guidance DOES include the studies that show 7% per annum cumulatively suffer drug-induced worsening on Pramipexole. So after 10/11 years- nearly every person will be suffering!.

So write a detailed email to your GP asking him/her to read the RLS-UK website, the NICE cks guidance IN DETAIL and tell them about the increasing number of legal cases.

I will also send you a message about legal action!

If you live in Southern England- try to see Professor Guy Leschziner. If in Northern England- Dr Chris Murphy.

Both will listen to your concerns about dopamine agonists and that Buprenorphine actually worked!