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.
Back again, again! : Hi all. I really... - Restless Legs Syn...
Back again, again!
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.
Hello Sue. Thank you for replying again so quickly. I live in Scotland and apparently, if I refuse their advice and treatment then they can cut me off. I have given them RLS Society information and posters to put up....they didn't. I have told them that I am scared to take Ropinirole and I don't want to but they are ignoring my fears. I have an appointment with my Dr. on Monday afternoon so , I will let you know what happens. I'm so tired of all of this.
You can always take and fill the prescription but not take it and tell them it didn't help.
That I will do ! Thank you Sue. I'm just not thinking straight 😕! xx
Brilliant 👏 love that Sue.
There is Dr Colin 0'Leary a neurologist in Glasgow that Scottie99 saw . I have no idea how satisfied he was with him but you could message him to find out. If you do let us know. You may have to see him privately to avoid the long waiting list. The usual cost is between £250 - £350.
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!
Hi, again, Jools. I have given my Dr.s information which I got from the RLS Society which I don't believe they read and I have told them time and again that I don't want to take Ropinirole. They just keep saying that they have other patients who are on it and they are finding that it helps their RLS. The Tapentadol helps some of the time but the Slow Release Tapentadol is useless and doesn't touch the fracture pain or the RLS so I am now just taking the Quick Release Tapentadol 50mg sometimes I have to take 100mg but sometimes through the day and night it comes to 250 mg. More than I took with the Buprenorphine. What more can I do than I have done in giving them written information. I never, EVER thought that I would end up being trapped at home, an invalid. I have fought pain and illness for most of my life with Endometriosis and lung cancer and other illnesses but this nerves trapped in the vertebral fracture and RLS has me floored and what with all of that and fighting the medic's I am becoming very depressed which is, also, not like me! I asked the last Dr. I spoke to to refer me to Neurology and she agreed and then told me that the waiting list is 2 years! The Neurologist that I want to see doesn't take Private patients! I spoke to his Secretary who was so kind and sympathetic so I think that I will speak to her again to see whether he would take a phone call from me . The RLS doesn't just happen at night. With the fracture pain I have to lie down in the afternoon and it can start up then. In fact, I'm in a lot of pain just now so I'm going to lie down for a while. I will let you know what happens on Monday when I speak to my usual Dr. I am so grateful to you , Sue and other's for all of your help, advice and support. I don't know how I would get through without you. Please take care. I promise that I will print out information AGAIN! Dr.s don't like us finding out information do they?! Take good care Jools and thank you for all the information that you are posting here.
All the very best xx
I am utterly disgusted at some doctors.If they read the research and information- they could easily teach themselves and soon be as knowledgeable as many of the people who post on here.
I will keep my fingers and toes crossed for you.
Has anyone had any experience with Tapentadol (Nucynta) or extended release tramadol?
Amitriptyline.. again!
Still having success (no RLS for almost a month now) with B1 supplement and celery juicing.
