So I went to see my GP today, I armed myself with my RLS book and printouts and told him about my awful symptoms and that I wanted to come off ropinerole and the horrid withdrawal effects I was experiencing etc. He questioned why I was coming off ropinerole and I told him that it has stopped working and I was experiencing augmentation. He asked what was augmentation? I knew there and then that I was going to be beating my head against a brick wall. He wouldn't prescribe me anything at all. I suggested Tramadol as this was being used for DAWS and he point blank refused to prescribe it. I then went on to suggest that alternative drugs are being used ie. gabapentin and pregabalin. He wasn't receptive one bit. He then spouted on about the NICE guidelines and I told him that the guidelines did reference these drugs. He then said that I looked rather stressed and I responded that he would be if he suffered with sleep deprivation as a result of RLS. So the long and short of it was that he knew nothing about RLS but he did take my book and print out and said he would read them. He questioned the book I gave him and said that "anyone can write a book" and that I shouldn't rely on information on the internet! I'm now off to find that brick wall so I can bang my head against it!!
My GP said "What's Augmentation?" - Restless Legs Syn...
My GP said "What's Augmentation?"
Sorry to hear of this. It's really difficult to decide what to do in that situation. I don't think I'd be able deal with it myself.
You will find it difficult to get a prescription from a GP for an opiate for RLS, although it's easy enough for pain.
As regards augmentation, if he's not familiar with this then I can understand his reluctance to take you too seriously. I'm sure he's come across people who self diagnose themselves based on little information and/or misunderstanding.
NOT that I'm at all suggesting that applies to you.
At least he appears to know about the NICE guidelines.
However, I think if I'd been in your shoes I would have felt patronised humiliated.
If your printouts had included the NICE guidelines and some authoritative information on augmentation, e.g. a study about it published in a medical journal, it may possibly have been different.
As you know, and as you could have showed him, the NICE guidelines do identify Gabapentin or Pregabalin as first line treatments for RLS. They also mention a mild opioid.
They also mention augmentation.
It seems you are trying to reduce the Ropinirole without a proper plan. I do note that is often said that you can't start Gabapentin before stopping a dopamine agonist.
Various reasons are given for this, one if them being that it won't work until you have stopped the DA. That's not true according to advice I've received from Dr Buckfuhrer.
Another is that you won't know if the Gabapentin is working until all the DA has left your system. My thought us that if you stop the DA, wait two weeks, then wait another 3 - 4 weeks for the Gaba to kick in,, what will life be like for 6 weeks. THEN you discover if the gaba wirks. What if it doesn't.
I suggest you start gaba BEFORE stopping the DA. See the link below.
In the meantime I guess you're still suffering augmentation. You could at least try reducing it partly, and slowly. OTC paracetamol and codeine may help.
Luckily I WAS prescribed Gaba f o r something else before stopping my DA and I believe it did help with withdrawing.
I saw a GP early this year, asked for an opiate and was flatly refused. This GP also admitted to not hearing about augmentation.
However, she was not patronising, and said she would look it up. We also discussed ferritin levels and she asked me to send her information about it being helpful to get it to 100. She prescribed Zopiclone for insomnia and we agreed I should consult a neurologist privately. The neurologist could then advise her what to prescribe.
Although I really got no further than you at that stage, she was very pleasant, I felt her equal and that I had a way forward.
In the meantime, you can see a GP again, another one if possible. Take your printouts e.g. NICE guidelines and take someone with you for moral support. It's less easy to be patronising when there's a witness.
You may also find the information on the link below useful.
The unutterable cheek of the man.
I would email him the latest research about an increased risk of suicide in RLS sufferers. He needs to feel anxious about a potential inquiry into his care of you. That will jolt him out of his complacency.
Then also send the latest recommendation of the IRLSSG (International Restless Legs Syndrome Study Group). He would have to be brave indeed to ignore the fact that you have tracked down the recommendations from the most erudite practitioners in the area from both sides of the atlantic. Tell him that if he is dubious of their credentials he should do some research of his own. Put the onus on him. Given his negligent (from a legal point of view) treatment of you so far, you are actually in quite a strong position and he needs to know it.
Targinact has been recommended for RLS treatment for some time - you could also mention that. nice.org.uk/advice/esnm67/c....
My (ex ) Neurologist who is the "main man " in a Movement Disorder Clinic also asked me what augmentation was? Hence he is my ex x
Thank you all for your replies and they do make interesting reading for me. My legs have now been kicking off big time for a good while as I'm typing this, It would seem I'll have yet another horrible sleepless night! Oh such joy to look forward to! RLS is a very lonely existence, especially in the middle of the night when everyone is sound asleep, which is all an individual craves. Thank you for your words of support, it really does mean a lot. It's nigh on impossible to explain this feeling to anyone who doesn't suffer with RLS. My GP was asking me to describe my symptoms and I did my best to. My blood test results were in and everything is normal, other than my vitamin D is low. It is winter! He told me that depleted vitamin D levels also cause muscle spasms.... I let out a snigger at this! I told him vitamin D deficiency does not cause RLS. On a good note he told me my ferritin levels were 97!!! Very perplexing since I take no iron medication.
NICE guidelines recommend Targinact which is Oxycontin.
Write it on a baseball bat and introduce that info to your Dr.
More Ego's needing looked after, no wonder the whole thing is in the sh1tter 
If that quack had read the guidelines you'd have been treated properly - complain, seriously. Watch you get prompt and effective treatment then!
The ironic thing was that he' was looking up the NICE guidelines whilst I was sitting in the surgery with him even though I'd told him what they were! He still refused to give me anything. All he said was that he would contact me. I've now been awake for nearly 24 hours!!
Complain, complain and complain again. Not only do you get a better service but you prevent some one else, maybe someone who isn't able to stand up for themselves, from suffering this same 2nd class service.
Why is this deemed OK for RLS sufferers but not say cancer sufferers or COPD sufferers?
I think me being slightly assertive did help tbh. I seemed to know more about my condition than the GP did which I think gave me a slight advantage. Although I did feel a tad patronised but could still hold my own. When he rang me today (after looking into RLS himself and with the help of my book which I left with him), he could see for himself that I wasn't talking rubbish yesterday. His attitude towards me had changed and I had a more receptive conversation with him. Although he has only given me codeine, it's more than he was prepared to prescribe yesterday. He'd rather leave it to the sleep clinic where he will be referring me to deal with the medication side of things. So whilst my RLS will still be extremely bothersome, I'm hoping there might just begin to be a bit of light at the end of the tunnel. You are right though, I believe being meek and mild doesn't seem to get you anywhere nowadays when you are fighting for your cause. Especially in relation to RLS. We seem to be the forgotten ones!
God I despair at the ignorance and pig headedness of most GPs on the subject of RLS. I feel your rage. My GP said " You haven't been using Dr Google have you?". Yes darling, because you are bloody useless. She then said " Drink some milk as we all get aches & pains as we get older & the calcium will help".
Luckily, I also have MS ( which is a walk in the park compared to RLS), and I called my neurologist in tears, explained the problem, she wrote to my GP and told her to prescribe tramadol and gabapentin and zolpidem. She also wrote that I should be on Oxycontin if necessary. I then saw the neurology team at King's College Hospital London and they write to my GP every 6 months confirming that I am highly knowledgeable about RLS and that my GP should listen to me. Result!
If possible, you could try to see a neurologist who knows about RLS. GPs really are jacks of all trades but masters of none so they know nothing about RLS and are therefore reluctant/scared to prescribe what they perceive as dangerous meds. If only they realised how dangerous dopamine agonists are. A letter from a neurologist confirming meds means the GP is "covered" and more likely to prescribe the meds that will help.
If you can, film your legs and yourself pacing on your phone and send it to your GP so he can see how serious and horrendous augmentation and withdrawal from Ropinirole is.
I wish you strength.
Thank you for this. I did see neurologist about 3 years ago and has told me to just stop taking the ropinerole and that I probably would feel some discomfort and not sleep for about 2/3 weeks. He was then going to put me back on ropinerole at a much smaller dose. I was already starting to suffer witH augmentation. I was taking about 8/9mgs off the stuff. He gave absolutely nothing to help me cope with the withdrawal symptoms! He was supposed to be knowledgeable about RLS. Needless to say I didn't do it, but am doing it now and am now on 3mgs per day and it's taking it's toll on my body and my mind! I'm waiting to hear from my idiot GP to see where we go next. In the meantime I'm getting little or no sleep and my RLS is off the scale sometimes lasting all night and day! 😭
I’m so sorry that you’ve met with such ignorance and negligence.Prescribing 9mg of Ropinirole for RLS is medical negligence. The maximum dose on the leaflets is 4mg but that is out of date. Most RLS experts (the only ones worth listening to) will not consider prescribing more than 1 mg.
There is still a lot of disagreement about the maximum dose which is why the pharmaceutical companies still have 4mg on their leaflets. He should also have recommended very slow withdrawal and prescribed meds to help. The slower the withdrawal, the more likely you are to get through it without hellish symptoms.
I couldn’t have made it without opioids and illegal cannabis.
Where in the UK do you live? Maybe we can recommend a neurologist nearby who does know about RLS ( including augmentation and safe withdrawal).
King’s London are not brilliant, but do accept opioids and pregabalin are better once DA augmentation sets in.
I’ve just read your previous post and see you live in Hertfordshire. You can get to London easily so ask to see someone at Professor Choudhuri’s clinic at King’s College Hospital. If you can afford to pay for private consultation ( it’ll be about £500)- you can also jump the NHS waiting list and see Prof Choudhuri privately.
Dr Guy Leschziner at Guys Hospital is also good and he does private consultations.
Both would help you get through withdrawal safely and recommend safe alternative drugs like pregabalin, Gabapentin or possibly low dose opioids.
Thank you for this. You mention that Kings London are not brilliant so perhaps Dr Guy Leschziner might be the better option. I'll look into both though. Hopefully I'll be able to cope with the train and tube without my legs and arms kicking off!
Yes I understand completely. There are still many doctors who do not understand the complexities of RLS. Absolutely disgraceful in this day & age.
I've had my current Doctor for 12 months, and altho he, tries, I used to believe that he was not totally convinced of my disabilities.
eg: RLS, Chronic Insomnia, Major Depression and Bi-Polar. I'd notice a type of reservation on his face, each time I requested a repeat script for my restless legs/ Parkinson's medication. The fact that I have been diagnosed on multiple occasions by several different professionals, I am sure is the only reason he repeats my scripts without complaining.
The problem being is that all of my illnesses are completely sight-unseen. It wasn't until a while ago that I complained to him about an extremely sore arm. After two X-rays and 3 ultrasounds, I went into his office to get the results of the last ultrasound, and he goes, 'Why aren't you screaming'? Long story short, I need a complete shoulder reconstruction as I have bone on bone. NOW he seems to be much more aware and interested in what I have to say. He knows that when I complain about something it is not BS, and I am being completely fair dinkum. It's a real shame that he has to have physical proof, to give me 100% trust. I thank god that I have an extremely understanding and sympathetic shrink.
And yes I completely understand your concern about the doctors ill-informed knowledge of augmentation. Actually I had never heard of augmentation until I joined this wonderful site, (but then, I'm not a doctor). I have spoken to 4 doctors about what I will do when the dreaded augmentation arrives .... And not one of them knew what I was talking about. God help us, and thank God for this site.
Between you and me and your brick wall ... The doctor that I regularly see, is extremely cautious, (and rightly so), about prescribing heavy medication for me, especially opiates. He works out of a fairly large medical centre that has about seven or eight independent GPS. One of his colleagues, (that I occasionally see when he's unavailable), seems to take an entirely different route to prescribing medications. I ask .... I get. Not that I'm complaining.
I'm pleased for you that you managed to get some help but it's ridiculous that you had to go through all of this to get it. We are just not being taken seriously and that is what is so frustrating.
Regardless of how well informed a doctor may or may not be on a particular condition, I would never go into his/her surgery "armed" with printouts, book references, etc. As soon as you do, you are, in effect, confronting him/her with a form of pressure. I believe doctors want to be able to feel they are acting completely on their own assessments. I always remember that it's the law that will ultimately stop me getting a particular drug; the doc just has to use his or her experience to decide if s/he's comfortable with my taking it. If you start talking about a condition they don't understand, I would expect they would make sure you could see someone who does. Of course, if you have something like PTSD, it's going to be just about impossible to find anyone in full-time or even part-time employment who fully understands.
Regarding opiates, as has been posted on this site before, a number of health authorities are stating outright that they don't approve of opiates for RLS.
When having a review at the pharmacists, I found that he did not know what I meant by augmentation. He tended to think in terms of less effect as a result of something like addiction. I muttered something about it being the drug itself making the condition worse, but, of course, I don't understand exactly what I'm talking about with ropinirole and RLS – does anyone?
One keeps reading there's problems with benzodiazepine use, opiate use, sleeping pill use, but I still seem to be short of a full exposition of what those problems are.
That was the problem ironbrain, my GP practice knows little or nothing about RLS other than reading the NICE Guidelines, which anyone can look up for themselves. However these guidelines do not provide much information in relation to RLS. GP's are not the experts and if they are not experienced in dealing with a condition, they should refer the patient to someone who is. Unfortunately in my case my GP referred me to a neurologist who seemed to have little knowledge on how to treat RLS. That said my GP did take my book (written and researched by doctors with excellent credentials) as well as my printout by Dr Buchfuhrer (one of the leading experts in the US). So we'll see what happens. With regards opiates the NICE guidelines do reference them for treatment of RLS augmentation.
I think younger doctors are more open to being "pointed in the right direction". The reality is that many people on here are "experts" on RLS, having read all the research papers and the medical textbooks cover to cover many times. We have to educate ourselves because there is no teaching about RLS at English medical schools apart from a very brief mention. Neurologists will also know very little about RLS unless they studied under someone with an interest in the condition.
In conclusion, we have to gently show our GPs that we have thoroughly researched our disease, the drugs that help and the drugs that make it worse. If the GPs are upset/offended/annoyed they should not be doctors. Older doctors are more likely to be wary of patients taking control of their health, but things are changing.
"Oxycodone hydrochloride/naloxone hydrochloride prolonged release tablets are not recommended for use as symptomatic treatment of patients with restless legs syndrome. Efficacy and safety data in support of Targinact was not sufficient to allay concerns regarding: "
lancsmmg.nhs.uk/wp-content/...
Whether they've changed their mind since 2015, I don't know.
The pharmacy I go to is occasionally out of stock or (more often) nearly out of stock for low dose ropinirole (and others in central Manchester are the same). It seems extraordinary to me given the incidence of RLS in the population thought to exist. It might also explain, of course, why GPs often know little about it. Does it also mean that many, many people are suffering in silence?
I was referring to the NICE guidelines which is what my GP said he would be looking at.
cks.nice.org.uk/restless-le...
Yes a DA is initially used for the treatment of onset RLS but it would seem for many people that it stops working and symptoms are exacerbated causing augmentation which is what has happened to me. I'm trying to come off ropinerole as what is the point of taking it if it's just making things worse. Coupled with the horrid withdrawal symptoms, my RLS is now out of control and sleep appears to be a thing of the past at the moment as a result. I slept for about an hour last night having been awake since 3.00 am the night before. So as you can imagine, I'm desperately seeking a solution which sadly isn't helped by GP's with little or no knowledge on the subject matter. I guess it's not surprising. GP's are general not specialists. Some listen to their patient with sympathy and try and work with them, sadly it seems an awful lot of GP's just want to shove you out the door!
I think you are right, there are many people out there who suffer with RLS and are just putting up with it. I can't do that as my symptoms are so severe atm. I know of several people who appear to have symptoms of RLS, some very mild, others not so, and are just putting up with them. Mine was inherited as my mother suffered very badly with it, as does my sister.
I think the various NHS trusts issuing these statements against Targinact do so despite the NICE guidelines.
My RLS, and it's not just my legs, my shoulders and body shudder too, is quite possibly worse than yours. Sleeping with it between say 14:00 and 9:00 or 10::00 the next morning would be out of the question. I'd do better to go out rain, hail, snow, frost or blizzard and just walk around all night than try to sit or lie at home. Maybe I could nod off for a few minutes occasionally on a bench, who knows. Fortunately, ropinirole still works for me, and I could not go to my GP and state categorically that it's making anything worse. I think someone said on here that RLS starts to leave off a bit when we get over a certain age. Maybe I've reached that age – in a sense, I'm hoping so.
I can empathise as I also get it in my arms too at the same time as my legs. I pace around the house sometimes waving my arms around for hours at a time. A bit like (as someone recently posted) the M & S Christmas jumpers advert.
Like you I don't sleep during the day but just get on with my life. I'm pleased that the ropinerole is still working for you and long may it do so.
I just wonder why the RLS Society isn’t writing to the GMC, NMC and GPhC (and Heads of Medical Pharmacy and Nursing Schools) to ask them raise awareness amongst many doctors nurses and pharmacists, of these and other issues affecting the very large number of RLS patients and its impact on their lives.
Maybe they could recommend suitable teaching materials and offer patients willing to be involved in doctors nurses and pharmacists education.
They could also suggest research areas.
Very well said! I totally agree with you.
Update. Well you could knock me down with a feather! I've just got off the phone to my GP! He's told me not to taper down my ropinerole for the time being because of my rotten symptoms. However, he is urgently referring me to a hospital which does deal with RLS. He wasn't comfortable about prescribing gabapentin or pregabalin as he didn't know what dosage to give me. No Tramadol either but he has prescribed some codeine for a couple of months until I see a specialist. (I do hope that they have a good working knowledge of RLS). He did read sections of my book and printout and admitted it was most informative. Feeling very tentatively optimistic, even though it may be a while before things start to get better. So being slightly assertive and going armed with information seems to have had some modicum of success!
Thank you everyone for your input. It has really helped me as well providing me with some knowledge and information that I could spout at my GP!
Wow! Vindication - at least of sorts. Well done you. I have seen posts from others who have had moderate success with their GPs when going armed with information - at least more so than going with only a description of symptoms. It clearly pays to be selective about the information passed on - the higher the quality from a medical point of view the better.
Well done, hope you get sorted out quickly
Time for a new doc.
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