I had a phone call from 1 Dr. who told me that Ropinirole would cure my RLS and was annoyed that I wouldn't take them. He decided to get the head of the Surgery to phone me to try to put pressure on me ! I did say that the 10 mcg had helped me a little bit but I would like a stronger patch . A few day's later the head of the Surgery rang me and when I explained that I had researched Ropinirole and Buprenorphine and joined the RLS Society, he agreed to let me try the 20 mcg patch and even agreed to put it on repeat prescription! He knows how stubborn I am but why do we have to fight for everything? I want to thank Joolsg and Sue and all of you who have supported me through this horrible time when I have been so desperate. So far , so good! My toes still feel strange but not as painful and I get the odd twitch but I am managing to sleep. I think my brain and body are trying to readjust because I do wake up at 4 a.m. but I manage to go back to sleep after a while.
If anybody here is suffering at all ( which I know you are !) then PLEASE, join the RLS Society because their information will help your Dr.s to make the right decision for you. Also, the support from this Forum is exceptional and I am , incredibly, grateful. I will come back and let you know how I get on with the higher dose Buprenorphine patch.
I am due to have phone calls from Specialist Nurses, 1 of them because I had a 6 year lung Xray last Friday and my health has been deteriorating...again, after my misdiagnosis for lung cancer and as our hospital has made multiple mistakes with me I am so relieved that I have managed to get help for RLS. Jools, you are my Guardian Angel ! Love to you all. Danni xx
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That's great that you were able to get the 20 mcg patch 👍but as you said "why do we have to fight for everything." And I hope you soon get help with your deteriorating health and that it is not anything serious. 🤞
Thank you Sue and thank you so much for your help and advice. Having gone through cancer once, I think there is , always, a niggle that it's come back. If it has then I will just get on and deal with whatever! However, RLS makes us feel so exhausted and ill doesn't it , so, it's difficult to know exactly what is going on. You have helped me so much Sue and I can't thank you enough. Your photo is interesting as my 1st Cousin in Canada played Ice Hockey and was very good...so he tells me ! Take care. Wishing you all the very best. Danni x
I am so pleased for you. I am becoming so enraged at doctors pushing Ropinirole and dopamine agonists. They ALL cause augmentation. To put a 70 year old on a dopamine agonist is criminal. Augmentation would hit in around 4 or 5 years tops and trying to walk off augmentation has caused the death of one of our members. No More!!!
Hi Jools. How are you? It's the pest again! I have yet another question that you may be able to help me with. I had to phone 1 of our Dr.s today and said that the Buprenorphine is helping my leg's but my vertebral fracture's have been so much more painful and now I'm getting periodic weird electrical tremors there and my right leg goes down....just for 2 or 3 seconds. She and the Physio say that splinters of bone are pressing into the nerves which means nerve damage. She has prescribed Nortryptiline (?) so will that interfere with the Buprenorphine? I am so scared of my restless leg's returning because I can feel the feeling lurking when I'm on the 6th day of the patch. Any advice or help would be much appreciated....again! The Dr. did say that it's a " cleaner " drug than Amytriptiline and I can take both but as we know, Dr.s don't know much about RLS so I just want to double check. Even 1 more night of RLS will have me going berserk! I hope that all is well with you Jools and I think about everybody on this Forum every day. Please take care. All the best, Danni
No. Nortryptiline is a tricyclical anti depressant used off licence for nerve pain BUT it WILL worsen RLS.All anti depressants worsen RLS.
Ask your doctor to read ANY RLS website or info from NHS and NICE.
They all expressly warn doctors that anti depressants cause/trigger/worsen RLS.
For the back nerve pain, pregabalin or gabapentin would be better OR medical cannabis.
I use medical cannabis. It takes about 4 to 6 weeks to go online, get the prescription and for the UK private pharmacy to send out. I use cannabis oil with 20% THC. Between 0.2 and 0.3ml at night helps me sleep and stops my MS nerve pain.
During the day, if you take 0.1ml every few hours, it will help the pain without making you high.
Thank you Jools...again . I did query this but the Dr. was adamant...again...that it wouldn't do anything to the RLS Syndrome. They really hate those of us who read up on our condition don't they?! I had a really strange letter today from the Chronic Pain Clinic to phone to make an appointment with them and yet they are the one's who diagnosed me with PTSD because of their mistake with my lung cancer. I had spoken to the Specialist Nurse a few week's ago about RLS and she was the one who contacted my Dr. supporting me in my request for Buprenorphine. She was really shocked at the error with the cancer and had said that I wouldn't have to go back to that building because that was where the error was made and it brings back bad memories for me but then I got this letter! They drive me crazy and I will not take any chances in case it makes the RLS worse because I've been through enough and the RLS almost made me give up. That's not me but it shows what a horrible condition this is. Thank you for the advice. The Specialist Nurse is going to phone me again on Friday next week but I will speak to the Dr. and politely, ask her to read up on RLS ! I did put the poster's and card's in though they , probably, ended up in the bin!I have a close friend with MS who is suffering badly so I will try to get her to join the Forum. Thank you again Jools. I would be in a much worse state without your help and advice. Please take care.
It is SO frustrating that some doctors refuse to read the scientific evidence.Dr Daniel Lee is a top RLS expert who has co written the great RLS textbook, 'The Clinical Management of RLS' second edition. Available second hand on Amazon. I used to take the book to the GP with me and show the relevant pages to my GP. Dr Lee has written this article in Sleep Review Magazine.
All we can do is keep showing them links to evidence. If they continue to ignore scientific papers, books and research, there is little hope of change.
Also, NICE AND NHS info on RLS expressly lists anti depressants as the cause of many cases of RLS. The link above takes you to the page. If he ignores us, fine, but will he ignore NICE & the NHS???
I agree. They do NOT understand what RLS is or how painful it is and how desperate we get and they seem to think that we are stupid and hate the fact that we find out everything that we can because we are so desperate to help ourselves and other's. I don't want anybody to go through what we go through and they are ' medical people ' who are supposed to be there to help us. Mind you , after everything they have put me through and are still putting me through, I don't trust them! Why do we have to fight and why has everything that has helped me been because I fought for the treatment or scan ? I'm getting too tired and feel too ill now to keep fighting...but I will for a bit longer because they get my hackles up ! I have put the RLS poster's into our Surgery and photocopied a few to post to other Surgeries. Whether Dr.s will take any notice....I'm sceptical! I do, now, have a Specialist Nurse who helped me to get the Buprenorphine so at least she is there for me. My cancer Nurse is going to phone me next week as I just had another annual, lung Xray, so I'm going to tell her what has been happening! She will not be pleased! Take care please Jools and I will be back to let you know what is happening. I can still feel it lurking but in the distance if you know what I mean! I am incredibly grateful for your help and advice and for Sue's and the support from everybody has been so touching.
Do not try Ropinirole! It will not cure RLS , You will become dependent on it and it will be very hard to come off it. You will have augmentation and it will be very unpleasant for you. Ropinirole makes one very sleepy. I did not do well on it. I hope you can convince your doctor to try another drug.If not, change doctors. Good luck.
I'm so sorry that you had to go through that. Another Dr. has prescribed 20 mcg Buprenorphine which seems to be helping the RLS but my spine and stomach pain is really bad so I have to phone the Surgery on Monday to speak to yet another Dr. ! The medical profession have driven me insane !Where we live, it's impossible to change Surgeries as so many people have moved here the Dr.s can't cope and neither can our hospital. Our situation is quite scary regarding health because it's difficult to actually see a Dr. and I don't understand how we can be assessed when we can't be seen. The NHS is on it's knee's and that is so sad.
Thank you for replying and I will be back to see how you all are and do a report back ! Take care. Best wishes, Danni
I am currently on 0.75mg of ropinirole a day and without it I am driven crazy. I have spoken to my doctor about Buprenorphine and explained about augmentation with ropinirole and he said that if i can find out how people in the UK have managed to get a prescription for it he would be willing to prescribe it but, as far as he is concerned at the moment he is unable to. Can you help me? How did you manage to get it prescribed for you? I am almost 72. Many thanks.
Hi Faith. I'm so sorry that I have taken so long to reply but I haven't been well and then a good friend came to help me. I'm, also, sorry that you are having problems getting Buprenorphine. I told my Dr. that I have joined the RLS Society and they and other sufferers advised me not to take Ropinirole because of augmentation and I asked them to look at the Mayo Clinic Algorithm which recommends Buprenorphine. I was in tears when I rang the Surgery and told the Dr. that I was desperate and hadn't slept for week's. I , absolutely, refused to take Ropinirole because of what I had read. I have been told that Dr.s in England and Scotland are being restricted when they want to prescribe Opioid medication to patient's which is incredibly cruel . I realise that they have to be careful but have you told your Dr. how desperate you are? Unfortunately we have to fight for help these day's. Please let your Dr. know about the RLS Society and let us know how you get on. The Buprenorphine 20 mcg is helping my leg's and feet but I have fractured vertebrae and multiple health problems thanks to our Pain Clinic and hospital and the nerve damage from the fracture's is getting worse so my Dr. today prescribed Nortryptiline which I can take even with the patch. Hopefully it will help the pain in my back which is excruciating. If you join the Society they will send you information, a couple of card's and poster's which you could give to the Surgery and your Dr. Take care and good luck. If you need to " speak " to someone again then message here again because this is a wonderful Forum and people here will help you because they helped me soooo much .
UK GPs can prescribe drugs 'off licence' for RLS, especially if there is evidence they can refer to.I spoke to the MS neurology team at St George's and Bart's in London and they all are aware of the dangers of Ropinirole and dopamine agonists and no longer prescribe them.
For RLS, they now prescribe iron infusions and then pregabalin . If the RLS doesn't respond to iron infusions or pregabalin, they prescribe methadone, another long half life opioid.
There have been trials of Buprenorphine for RLS in the USA, but not in the UK.
Some UK health authorities 'red list' Buprenorphine which means GPs are not allowed to prescribe. Only a specialist can do so.
So ask if Buprenorphine is red listed in your area. If not, show your GP this US trial.
However, as you're on Ropinirole, you should first get off it, raise serum ferritin above 200 via pills/iron infusions and try pregabalin.
If they don't help, then ask for a trial of 0.4mg Buprenorphine.
Sorry to hear that you are struggling with your health, Danni, and thank you so much for taking the time to respond to me. I will join the RLS society and keep my fingers crossed. Not holding out much hope but I'll let you know how I get on. Again many thanks 🙏, very much appreciated. Wishing you well with your health issues.
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