it’s only taken 3 weeks after half a lifetime of RLS for 2 amazing medical professionals to get me on the road to recovery. Having spent over £1k in going in the wrong direction with private medical care I found a Consultant Neurologist, I should say a member of this form found him and passed his name on to me. I had an initial private consultation 3 weeks ago, best £250 I’ve ever spent and I appreciate how very fortunate I am that I could afford it, I know not everyone can. Doctor Murphy then transferred me to his NHS clinic at Salford Royal Hospital where I met him to collect a prescription of 3 x 7 day Buprenorphine patches as a trial. I also met a colleague of his Professor Silverdale in his clinic at my local Hospital. He doesn’t treat RLS but specialises in Parkinson’s disease so they refer patients to each other in their specialties. As my surgery is still refusing to prescribe Buprenorphine patches having received letters from both Dr Murphy and Professor Silverdale they have agreed together that as long as I stay under the care of Dr Murphy that Professor Silverdale will arrange for me to collect prescriptions every 3 months for Buprenorphine 7 day patches. I feel extremely fortunate to be under the care of Dr Murphy and Professor Silverdale and although I have written to them both thanking them for their prompt treatment and sincere acknowledgment of what life with RLS does to families, thanks seems far to little for what’s truly in my heart. Dr Murphy is totally disgusted with my surgery and said in a letter to them that their refusal is beyond belief.
To all those out there who have been so supportive during my membership I thank you all from the bottom of my heart and I pray 🙏 that you will all see the sun shining as you step out of that dark tunnel.
God (whichever one you believe in or it none) be with you all and walk beside you each and every day and especially nighttime
HipHop1972 🤗
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HipHop1972
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Hi ChrisColumbus, love your reply and I agree but I believe it’s only the one, I found the others to be really nice but believe under the thumb of this particular GP Partner who won a prestigious award for innovation by introducing a Triage system into medical practices that means you can’t phone a surgery, you either have to book on line, about 10 days for any GP or if you call into the surgery they give you firms to fill in that will then be considered and triaged to a doctor but again about 10 days. I think they are worried that if they stand against him he may leave. It would be the best thing he could do, he never sits down is impatient doesn’t put patience at ease and I put in a complaint about his attitude to me many years ago before he became a partner and I’m not the first. The trouble with trying to move is that they buy in a lot of specialist care so you don’t have to travel to a hospital. But definitely the pox on that one.
Best news ever! I've been waiting to hear how you've been getting on with the patch, and it sounds as though things are finally moving in the right direction. There are good doctors out there. We need to keep adding to the list. I'm so glad Dr Murphy and Professor Silverdale went the extra mile to do what your surgery should have done. Shame on them and all the others that refuse to look at the ever increasing body of research in support of low dose opioids for severe RLS. You kept fighting and didn't give up. I couldn't be more happy for you.
My dear Claire_lc. Thank you so much for your very kind words they mean so much. I feel very blessed and we all should be granted that blessing 🙏
I am walking along a beach and there are two sets of foot prints but a little while later I look down and see only my own. I cry out and say Lord why have you deserted me. To which I heard when you saw two sets of foot prints I was walking beside you but when you saw only one it was because I carried you.
I am fortunate in my faith and that it allowed me to be carried during the dark days.
Dear LotteM, thank you. Each patch is 5 microgram/h and it works with varying degrees of success, I’ve asked for a stronger dose. You are in my thoughts and I hope you have some rest byte .
Hello Nikos64, it is vile, you are right and it is treatable if you find the right people. Even in my dark days I would remind myself of all those who had incurable diseases, and I’ve known some and still do, and told myself that I’m still alive so where there is life there is still hope.
Hi Marlayna67. Oh you are still a youngster 😄 but I know what you mean, it must be doubly difficult over there if people can’t afford health insurance. A fund sounds like a nice idea but I think it would probably end up being like medical insurance.
I’m right with you there Marlayna67 it’s not fair and a lovely thought. Sorry if my response sounded uncaring it wasn’t meant to but unfortunately life isn’t always fair no matter how we wish it to be otherwise. You keep on being the caring person you are and keep having caring thoughts and who knows.
Oh HipHop am so pleased to hear your news & delighted to hear your Specialists have written a letter to your surgery about their entrenched views. Hurrah!
Thanks Simkin, you’re very kind. It was an excellent letter and he has written again stating his disbelief concerning their attitude. He said that there is no medical reason why a surgery think that they aren’t qualified to prescribe Pregabalin when they are quite happy to prescribe medication which have much more serious side effects.
Well done Hiphop. And good work from the two specialists in acting beyond their immediate boundaries. Hopefully they will take this to heart and take it further, such as shaking up their peers by raising awareness for this issue.
Hi Simkin, what am I like 🫢 writing Pregabalin doo, should have read why a surgery think they are not qualified to prescribe Buprenorphine. Senior moment
This is great news. Having just been liberated from DA's by Buprenorphine myself, I understand exactly how you feel. Thirty years of RLS darkness lifted and suddenly light. It seems so simple but it took so long. One can hope other people will find the same relief! Very happy for you. A new life!
Hi susiehandley. I had to see a consultant privately who specialised in RLS. My GP wouldn’t have anything to do with Buprenorphine as he said it was unregulated and not approved for use in UK and no evidence that it worked. That’s the reaction of the majority of GPs in this country who are out of date and won’t look into the latest research, absolutely disgraceful. I’m sure if you post a general enquiry on this forum someone will have someone they can recommend. You don’t need to disclose your actual address but maybe a city or large town that is within easy reach of where you live.
Hi really pleased for you. Its crazy how we have to fight to get the help we need for this awful disease . I've justvstarted patches after using the pills I'm on 5mcg but still needing the pills so asked doctor if I can up it to 10mcg and sent them some photo shots of info from this group. They agreed.
When I read of your success this morning, tears came to my eyes. I don’t have RLS but I advocate for a friend that has RLS who experienced augmentation. He was prescribed 2 dopamine agonists concurrently. I’m a retired healthcare professional and realized what was happening then asked could I get involved. It would take a book to tell you all that he experienced. It was frightening and I feared that he might eventually take his life., but I’m glad to say that once we got his primary care provider to review the current guidelines for treatment of RLS, he is on the mend. He currently takes Gabapentin 600mg at 530pm, Gabapentin 600mg at 730pm, hydrocodone 10mg at 830pm with instructions to take an additional 10mg 4-6 hrs later if needed (symptom driven). The usefulness of using hydrocodone was discovered when he had a cold and was prescribed Hycodan for cough suppression. Extended release hydrocodone did not work. Hopefully this will continue to alleviate his symptoms until such time as the medical community has educated themselves regarding the devastating effects of RLS, PLMD…augmentation and learn to use opiates which are a Godsend. Hydrocodone has made a world of difference.
Ah bless your cotton socks Busunsc713. I’m so glad you don’t have RLS and that your friend has you fighting his corner, we all need a champion and you are his. May he continue to get relief with the Gabapentin, All we want from the medical fraternity is that they read the treatment updates and put their outdated views concerning Opioids where they belong in the land fill.
Wonderful news, thank you for brightening up my day. Well done for never giving up, I hope you enjoy your new lease of life. And well done to all this on the forum who listened, advised, supported and did what they could to help.
Hi Baldrick123, firstly are you a Black Adder fan, I am, a brilliant series.
Yes Doctor Christopher Murphy at the Alexandra Hospital Cheadle is the same one that I consulted. He transferred me onto his NHS list at Salford Infirmary.
He helped me greatly so have no reservations in recommending him
Hi HipHop1972. Yes, the Baldrick part of my profile name is from the Blackadder character. It was indeed a great series. I am looking forward to seeing Dr Murphy.
Hi Baldrick123. Ha ha. Hope your appointment goes well, he is very nice but he talks very quickly so listen hard or as in my case I took my wife to pick up what I missed.
I am back home now after my appointment with Dr. Chris Murphy of Alexandra Hospital, Cheadle, UK. He is every bit as good as everyone has said on this forum. He discussed lots and lots of options and I agreed to have him work with me for a while to try things and hopefully finally resolve my RLS, or at least make it something I am able to live with without it ruining my life. I have to say though, it was a daunting appointment, as I live an hour's drive away from Cheadle. I am sure I don't need to explain to fellow sufferers why that is a daunting prospect. I live alone so had to get there under my own steam in the evening after a grueling day at work but I am back home safe and sound and looking forward to what Dr. Murphy can do for me.
Hello again Baldrick, did you see Doctor Murphy on Wednesday evening the 10 July, and if you were sitting in the area near the coffee machine then I probably walked past you at about 4.40 ish as I was delivering a letter to Doctor Murphy, I use the nurses station at a post drop off and they add it to his patient records as I could never gat a reply from his secretary at Salford Royal, she didn’t reply to my emails and you couldn’t leave a message. Anyway she has now left and he has another secretary called Hayley who is very responsive. I have to collect my Buprenorphine patches up from the hospital, Doctor Murphy sends the prescription through to Loyds out patients pharmacy and I collect from there. A bit of a pain as it’s a three hour round trip but I’ve now been prescribed a 3 month supply which is very helpful. My GP refused to prescribe the medication as he said it was outside their domain, hey ho. Let us know how it goes with your treatment.
Hi HipHop1972. My appointment with Dr. Murphy was on Wednesday the 10th of July but at 7:30pm. The appointment has already had a positive impact as one of his many suggestions was to try Co-codamol 8mg/500mg tablets as an interim measure. Last night my girlfriend came round and I took two of these pills alongside my normal meds. I was able to sleep all night right through to the morning in the same bed as her, something I have never been able to do before. In fact I have never been able to sleep all night in the same bed as someone else in my entire life due to RLS. I am pretty sure this contributed to my marriage breaking down.
Hi Baldrick123. You would have been at the Alex much later than me then. So very pleased with your results and I have no doubt the stress of living with someone with RLS could well have contributed to the sad breakdown of your marriage. I had to move out of the marriage bed and into a spare room as my bouncing around kicking and not good language would have put real strain on our relationship. After I completed withdrawal from Ropinirole I was taking Solpadeine Extra owing to the codeine content. I didn’t get the same results from Cocodamol strangely enough. Anyway so pleased for you and your girlfriend, just bear in mind she may not want you to sleep all the time 🤣🤣
My first posting here. Just made appt. With Dr Murphy after reading your post as going through torment weaning of DA Pramipexole after augmentation. Doing it very slowly as advised, but augmentation symptoms were really bad anyway. Never informed that DA drugs for RLS do help at first but will eventually, for many people, make RLS symptoms worse……and that stopping the DA drug makes it much, much worse. Augmentation is noted on drug info sheets but not the chemical dependence that taking this kind of drug creates.
The story of RLS drug treatment with Dopamine Agonists could be written as a sinister, dark ‘fairy story’ where hero/heroine is cursed to walk the earth day and night, eat standing up, rarely sleep and any attempt to rest when exhausted increases the torture……and the twist of this tale is to reverse the curse, you will have to go into battle with the Dragons of misinformation, lack of current knowledge, ‘it can’t be that bad’ attitudes and ‘opioids are addictive’ mind sets.
I checked this site recently for information as nightmare symptoms of worsening RLS during weaning process, plus no sleep for weeks. UK based, on maximum dose of DA over twenty years. GP helpful but NHS neurology appointment a year away. As you say, not everyone can afford option to pay to see Consultant privately so grateful it is an option although it means travel plus accommodation in my case too. This kind of help should be available to everyone. Will report back to site after visit as info on site really helped me. Will also join RLS UK.
Thanks for your helpful info, HipHop 72 and to the other regular contributors on this site, it provides light at end of tunnel.
Hello Riversong, so pleased my post helped you but sorry you have to travel and find accommodation. Did you post a large town or city within easy reach to see if anyone would respond with the name of a helpful consultant nearer to where you live. Good luck anyway and let us all know how you get on.
Thanks for reply, travel is a couple of hours away as direct train route from my location and had NHS Neuro appt but for a year away. Had read a few positive reviews re Dr. Murphy so think the expertise and interest in RLS is key. Will keep the forum posted as it is such a good resource.
Good morning Riversong. I understand and thanks for reply. When you see Doctor Christopher Murphy and you discuss Buprenorphine May I suggest that you stick out for the medication in tablet form, he tends to favour Buprenorphine 7 day patches and I have been having a few issues with them over the past couple of weeks. I have found that after changing the patch after 7 days that the new patch doesn’t appear to work and I’m back to the bad old days and have to remove the new patch and replace it with another. This has happened 3 times now. I replaced my patch on Friday morning and all was well until I went to bed and RLS kicked in so after walking around the house and trying to sleep but legs jumping I got up and replaced the patch. It didn’t kick in so still no sleep. I will see what happens tonight and if necessary will again replace that patch. I don’t know if it’s a faulty pack as they worked wonders when I first started using them. I’m going to contact Doctor Murphy’s Secretary on Monday as I’ll be due a new prescription and request he transfers me onto Buprenorphine tablets. Julsg swears by them.
Thanks for that helpful advice. Was hoping to only need to use something like Buprenorphine while weaning off Pramipexole. From posts here, see it takes time but be good if GP’s could prescribe after initial consultation. Anxious about adding another potentially addictive drug to help me stop taking the DA, but withdrawal from DA after long term use is just awful. Shift in policy in UK primary care to reduce opiate and gabapentoids prescriptions may be why people with RLS can only be given these drugs under the supervision in secondary care of specialist. Just makes getting timely help that bit more difficult for us. Appt late Nov so will post back after that. Good luck getting your switch to pills.
Hello Riversong, please don’t worry about becoming addicted to Buprenorphine all the credible evidence shows that not to be the case. Read the Mayo Clinic paper on RLS and treatment. Once you have fully withdrawn from the DA you will need to continue taking Buprenorphine, not through addiction but because it will be needed to control your RLS. I have no medical training only suffering for 40+ years without a suitable medication.
My GP refused point blank to prescribe Buprenorphine so my medication is posted to me by Salford Royal Hospital on prescription supplied by Doctor Murphy on the NHS.. He speaks quite quickly, I took my wife with me so I didn’t miss anything he said.
The main thing is to come off the DAs and move onto a treatment that is proven to work.
Thanks hiphop, reassuring about Buprenorphine and have given Mayo paper to GP. They helpfully said they didn’t know much about RLS and if I found something helpful in literature to pass it on. Will let you know how it goes and aiming for early 25 to be off the DA’s.
Hello Riversong, thank you for reply glad to be of help. Keep going with DA withdrawal it’s slow but worth it. I was taking 6mg Ropinirole/ night and it took me 13 months to withdraw, but oh boy, was it worth it.
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2 questions- Does buprenorphine give you insomnia?! Also what’s the best type to ask for?
