For the first time my Wife and I sobbed in despair this morning after one of my worst nights yet since withdrawing from Ropinirole. RLS improved remarkably after my final dose and that was October 2023, nearly 7 months ago but my symptoms have got progressively worse and I can only put that down to the fact that Ropinirole has a long lasting grip on you and as time passes the tags the drug has left behind become ever more demanding. That’s like being hooked on class A drugs or alcohol, once you stop being reliant on the substances they leave a tag behind so even though you no longer use them they leave that memory chip in your brain.
You who kindly follow me and my wandering posts and reply with care and support are the life blood of Health Unlocked. You know the battles I’ve been fighting against the establishment who don’t or won’t listen. either from ignorance of RLS or concerns about the cost of the treatments affecting their practice budgets.
I wrote to my GPs over a week ago asking for a referral to Dr Robin Fracknell in Bath a long way from where I live in Cheshire, that was over a week ago now and I’ve not received an acknowledgment from the surgery that, they’ve received my letter and that they will refer me. I later find from a post from a very kind member of this Forum that there is in fact a Neurologist working out of a private hospital within easy reach of where I live who has an expertise in RLS and treated them very satisfactorily. Tomorrow morning I will be phoning the secretary of Doctor Christopher Murphy to see if I can get a private appointment without referrals from my GP, don’t want to confuse matters any more. I do already have a referral to a City Hospital but the waiting time is long but strangely Doctor Christopher Murphy also is a Consultant Neurologist there as well. Yes I am confused turning ever which way but wrote this free verse poem written through the tears of my frustration.
I’m like a pebble on a beach, pushed and pulled each and every way by the restless waves. Never still never finding a resting place until one day a storm may come and my pebble will either be thrown far above high tide to rest there until the next storm or be dragged back into the ocean depths deep deep deep beyond sight where it’ll sit amongst all the other pebbles that have sunk into the depths, no longer seen, picked up and sent skipping over the waves of life creating sparkling droplets of spray in their wake caught in the sunlight of our hope
HipHop1972
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HipHop1972
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hi there. You have my deepest sympathy. I’m trying to taper off pramipexole and really struggling. The augmentation was terrible after a year of taking it. It extended the symptoms to tea time and lasting until middle of the night
I reduced by half a tablet last night from two to 1 1/2 and my symptoms are horrendous. Arms are still playing up as I type at 8:00 this morning
I’m desperate but I’m determined not to take a tablet to ease.
Which hospital does professor walker work from? I’d be very keen to try to speak to someone. My go is well meaning but he just doesn’t understand rls. All he says is that it’s the worst case he’s ever seen. I’m on gabapemtin 300mg now but gaining weight rapidly and shattered
Hi Emmys_Mum. You are going through it aren’t you, so sorry. Professor Mathew Walker is in London and is the Professor of Neurology at the Institute of Neurology located at National Hospital for Neurology and Neurosurgery in London. Telephone 020 3448 8623.
I know he is extremely busy and I never actually managed to get an appointment but you have my best wishes and luck to get a result
You are reducing too quickly. 25 days ago you were on 3 tablets, so reducing by 1/2 a tablet every 2 weeks you should be on 2 and 1/2 tablets and in 3 days should be reducing to 2 tablets. You are suffering more than you need to by reducing sooner.
Everyone is different, after 10 years of augmentation and being syptomatic 24/7 pramipexole was doing sweetfa and I went off it far quicker than recommended, yes it wasn't pleasant but was far less drawn out.
I went through withdrawal of Ropinerol (on it for 15 years) after severe augmentation. I was offered a neuro patch as an alternative, which still contained the same DA. I'd already reduced from my Ropinerol and had got through the worse Due to a catologue of errors my neuropatch took a week or so to arrive. So I decided after advice from this amazing forum, I was not going to get hooked on another DA. I've been drug free for 6-7 months with only the odd night of mild restlessness. Granted I take x1 tramadol if I get a little rare flare up, which definitely helps. I see a private neurologist and his last phonecall was last week. He did say the RLS may come back, however keep doing what I'm doing, which is knowing my trigger! Write a diary if possible, it helps so much. Food, drink. I've had RLS since I was 18, now 52 and its finally over. I take Magnesium (which has been my best decision) ferrous sulphate, red clover, sage. Exercise (walking). Changed my diet (triggers). Sleep hypnosis and relaxing music on Alexa at night. Warm shower before bed. I too have walked the floor and cried so much, I understand your pain so much. Maybe try a more organic approach. It's changed my life. These drugs we rely on to survive a night are destroying us. I wish you luck, its definitely worth the effort to look for alternatives and know your triggers, we all have them (cheese, chocolate, wine, junk food, everything we enjoy it seems!). Its worth it. I sleep so well. These drug companies make a fortune on our reliance and suffering. Break free!! There is a better way. Its changed my life. I pray it changes yours. 🥰🥰
Good luck! Your pebble analogy is most apt for our interaction with modern medicine and pharmacology options. We put our trust in doctors and they in turn trust the pharmacy solutions. While I cannot connect my RLS with something directly - I'm very suspicious of a course of antibiotics (Ciprofloxicin) taken for a prostate condition causing SIBO that eventually derailed my mineral absorption including iron.
Hello DicCarlson, appreciate your post, sometimes the words as with Pebbles just come into my head and I have to write them down and impose them on other people 🤣🤣. Best wishes HipHop1972
Hi HipHop1972 - I did not take a letter with me when I first went to see Dr Murphy and he did not ask to see one - he has since transferred me back into his NHS clinics at Salford Royal by the way.
Hello Ced60. Thanks for your reply and I’m actually seeing Doctor Murphy at the Alex on Wed 22 at 19.30 hrs for a private consultation so we will see how it goes, strangely enough I’ve an NHS referral pending at Neurology in the City Hospital and have been waiting some time for an appointment so your initial post and my follow up on it may well have moved things on for transferring me to his NHS Clinic.
I'm your age, gender, and ethnicity, but live in the US. My life turned completely around once my doctor wrote me a prescription for low-dose (10mg/day) methadone. I see you have been turned down for getting buprenorphine - what about other opioids? If there was ever a candidate for opiate relief, it would seem like you are one. It's just cruel what you are going through. I would keep pressing for a pain-killer of some kind.
Hi DoDaMan, thanks for support but my medical practice have refused to prescribe any and all Opioids even when supported by letter from a Specialist Consultant. It’s not easy to change your Doctor either to one who may support you. Anyway we live in hope.
Instead of treating te symptoms i.e. blocking the spurios nerve signals why don't you try to tackle why the nerves are sending out these signals? The reason why they are sending out the signals is often because they are inflamed and that inflammation is caused by the food that you're eating. Look far a list of foods that cause inflammation on the internet and avoid those to start.
Thanks Eryl. I take it from your reply that you managed to cure your RLS by eating as best you can non inflammatory foods. How did you discover that this worked for you and scale 1 - 10 being most of the time when not moving were you at. Supprised that it’s not widely written about.
It’s very interesting and I will google and see how it compares with my current diet
I first noticed that sweet chilli sauce triggered my RLS then I searched why that may be and found that sugar was inflammatory, then it was a matter of cutting out sources of sugar. As I cut down on sugar my RLS reduced but it did not go away completely so I searched for other causes of inflammation and foods and vitamins that fight inflammation.
By now I very rarely get RLS and when I do it has always been because of things I've eaten at social events. One thing I noticed fairly recently is that quite small amounts of sulphites cause PLMD for me.
Hi Eryl, we actually exchanged posts quite a while ago as I recognised the lighthouse on Anglesey in your picture. I didn’t realise there were so many inflammatory foods. I don’t take sugar, cakes and biscuits. I don’t drink alcohol or smoke but what I did notice. As a boy I used to live sliced and tinned peaches, not had since childhood so bought a tin, ate thee quarters of the tin and legs went off the scale for nearly 15 hours. Lesson learned so will not buy again and will definitely look more carefully at other foods and withdraw from diet one at a time.
I so feel your pain , I came off D'as last yr and it was the worst year of my life . On April 20th this yr I saw a neurologist in Gloucestershire and asked him for Buprenorphine , wow from night 2 I became totally free of Rls . Then the fun began, my Gp flatly refuses to prescribe as on their red list . I contacted another surgery who said " generally we will prescribe with consultants letter "so I moved Gp"s and 5 days later they are doing abs nothing about my prescrip request so I just know its not going to happen . I am so stressed its making me ill. Good luck with your appt , keep us posted
Hi Huntingleroy, yup, both in same position and it stinks, you can get medication but can’t find GP who will process it, I’m hoping to get medication that I know my GP definitely won’t prescribe and still no luck on alternative surgery. It’s that bloody pebble again. Take care and good luck 🤞
Hello Huntingleroy. Well that’s interesting on cost but I’m so very very sorry that you find yourself in my position. It’s infuriating but I send you my best wishes and hope you find a way around it.
Was it your appointment this week , if so how did it go? Ive just contacted a few drs but Im wasting my time . My neurologist can prescribe it altho communication with him is dire and oh so slow
Hello Huntingleroy. Thanks for asking, I really can’t believe it as I feel I’ve been on a bullet train this week. Rang the Alexander Private Hospital on Monday, was giver an appointment with Dr Murphy for this evening, went to see him taking all my previous paperwork and letters from Doctor Thomas to my GP. I collected a referral letter from my surgery yesterday which covered my whole medical history going back to the 60s and letter explaining why they couldn’t prescribe either Methadone or Buprenorphine. He was astounded with the reasons my surgery would not prescribe buprenorphine as Progabalin is a controlled drug in UK, I got the feeling he thought they were playing games and certainly didn’t know what they were talking about. Anyway I go to see Dr Murphy at his surgery in Salford General Hospital on Friday to pick up a NHS prescription for Buprenorphine.YES that’s it, Buprenorphine. So in 7 days I’ve got what I’ve been fighting for over the last 7 months. We went through all the possible side effects, but what a result. To say I’m ecstatic is an understatement.
I’m so very sorry for you, having to wait such slow correspondence, can’t you speed him by stating your desperate mental health and depression that accompanies it. I thought I was up a blind alley that miraculously opened up and I pray that yours will.
I appreciate everyone is different, however, still on Sertraline 100mg x1, never stopped it. Ferrous Sulphate 200mg x1. Magnesium Citrate 100mg x1. Red Clover Complex x1. Evening Primrose Oil 1000mg x1. Code Liver Oil 1000mg x 1. Sage leaf 500mg x1 (menapause, it stopped my hot flushes). All taken daily at about 7pm plus Tramadol x1 50mg as and when for a rare mild restlessness. Hope this helps 💕💕
Code liver oil.... not code. There is noone more shocked and stunned after 34 years of severe rls, in my arms and legs, and the hell on earth suffering through augmentation, that its finally over. Even my compulsive disorder (all in my previous posts). If it works for me to be drug free, surely it must help more of you guys who are needlessly suffering. Go through the withdrawal, take the tips that are given to help, and get off this poison! We dont need it. Its lifestyle (triggers, find out what they are, its worth the hassle), extra iron and the will to fight it in the initial stages. Its changed my life. It has to be worth a shot guys, however, maybe let your GP/doctor know (not that they give a toot, they get money for each poisonous prescription too). I apologise, but this condition and medication has destroyed the best part of my adult life, and I'm angry. There is a better way for most of you, I'm sure!! 💕💕💕
Dear HipHop, your poem and update made me weep. Knowing as I do now how life-changing Buprenorphine is, I feel doubly furious at the ignorance and intransigence of most GPs. I’m so so sorry you are having to endure this. It’s inhumane to deny people an inexpensive drug in amounts that can only be described as microdoses.
I now understand Jools when she expresses utter exasperation at the lack of up-to-date training for doctors and the uphill battle to even get the UK to conduct trials. She’s even found funding for god’s sake, and still no hospital is able to take it on.
We are going to approach Dr Fackrell in the hope that he may have the interest and capacity. Jools has had amazing success getting the subject covered in the media over the years, but we realise that it’s only when the UK has conducted its own clinical trials that doctors will ever sit up and take notice.
In the meantime I really hope Dr Murphy can swing things with your GP. 🤞🤞🤞
My very dearClair_lc My apologies for messing up your mascara 🤣 that wasn’t my intention. I really appreciate your support. I am swing Dr Murphy at 7.30 pm tomorrow and am well armed with info to take and my wife is coming with me as an additional memory. I received 2 Tens machines today, one for each leg and will give them a test flight tonight 🤞
My dear Claire_lc. You are very kind and I appreciate your support.
I’ve had a real rollercoaster week can’t believe it really. On Monday I contacted Doctor Christopher Murphy via the Alexander Hospital and received a private consultation 7.30pm Wednesday evening. It was a positive consultation and he was appalled at my surgeries reaction in refusing to treat me with Opioids even though they prescribed Pregabalin. Anyway he said if I could get to Salford Hospital by 9.30 this morning he would provide a prescription for Buprenorphine. This he did transferring me to NHS, he could have kept me on his private list, I didn’t ask to be transferred and he met me even though he didn’t have a surgery and walked with me to the hospital pharmacy, made sure I received the medication. This I would say was going the extra mile.
A strange thing, he got me up on the computer and found a letter to me with an appointment to se a Professor?? Of neurology at my local hospital first week in June, I’ve not received that letter but Doctor Murphy shares an office with him at Salford and was talking to him this morning. He said not to cancel until I found out how Buprenorphine was tolerated, if ok then cancel and he would advise Prof that he was retaining me as a patient on his NHS list. Nearly finished ha ha. Doctor Murphy is writing a polite but critical letter concerning refusal to prescribe Buprenorphine. What happens if they still refuse will have to be seen. I’m falling asleep now, in fact I have been nodding on and off all day so going to climb the wooden hill to the land of nod. 💤🛌.
Dear HipHop, This sounds incredibly positive and I’m so happy for you.
Dr Murphy is clearly one to go on Joolsg list! What’s interesting from your reply is that private doctors often also work for the NHS, and as a result Dr Murphy was able to provide you with the all-important NHS script. I wonder if other private doctors could do the same. I’m thinking in particular of Huntingleroy , who has been having the same issues as you. You might just have cracked the problem we’ve all been grappling with!
Did you try the Buprenophine? What dose have you started on, and are you getting any relief? Hopefully you’re dealing with the nausea ok?
Hi , yes I saw my neurologist privately initially then he put me on his. Nhs list . The first appt was cancelled to the next month , thats when I asked Buprenorphine and got it . Im still in shock how amazing it is . Still battling to find a Gp to prescribe. The next county to me (15 miles) its not red listed so have asked if they will take me on . Tried another Gp near me , they will discuss my case at next meeting and I also contacted Dr Murphy who will prescribe on the Nhs but not sure if that is a one off or every month .Also contacted my neurologist secretary a week ago re another prescrip but waiting for a reply !!!!!! So watch this space guys . I managed to get written proof that the next county isnt red listed as my niece is a practice nurse there
Thanks Joolsg I really couldn’t fault him and so good to know you’ve got someone listening and fighting your corner. There won’t be an issue changing to tablets if patches don’t sort it, but we’ll see.
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