I’ve been looking through a lot of current and old posts about the sufferings caused by RLS so I can use examples to include in my evidence to send to my wife's doctor/consultant. I’ve already sent off a very long description of how she suffers and how managing RLS has completely changed our life for the worse. I typed about 2 pages of A4 and laid it on thick but didn’t exaggerate – I didn’t have to. When you list out all the different changes (no cinema, no evening dinners out, no grandchildren’s performances etc, and add it to no sleep, no rest etc etc it’s really really crap.
The main subjects on the forum are suffering, uninformed doctors, poor medicines and peoples different coping strategies/management of the symptoms.
At the moment we are asking our consultant for Temgesic 200mcg, hence all the evidence I’ve tried to build up. Our consultant (for ‘healthcare of older people’ in Devon) replied that the email was very helpful and she’d discuss the request with her colleagues.
I also think that RLS is a very bizarre disease in as much that sufferers take their own actions to lessen their symptoms and over a long period of time they accept the symptoms as being a normal part of their life. I’ve seen this in my wife. We now sleep in different rooms so she is free to get up turn the light on, pace about etc without being constrained by not wanting to disturb me. If I wake up in the night I usually go in and see how shes getting on. When she’s sitting up in bed with her head in hands, sobbing, I know it’s not good. When she manages to get up only a few times but managed to get back to sleep, then that’s a good night. And that’s how she’s become accepting of the disease. And she’s not alone, there’s numerous examples of people struggling on with RLS and they only become desperate when it flares up. This isn’t their/your fault, it’s because of poor doctoring and inadequate medicines. It’s a perverse disease that’s seems to trick you into accepting it because if you go against it, you’ll get a hellish backlash.
I could rant on and on but I want to get to my point.
We often bash up the doctors but on the other hand it’s not all their fault. I had to go to the doctor myself the other week. We started with a telephone appointment but he thought I should come in a see him. That same afternoon!! Usually the waiting room is packed with patients but with this Covid situation, it was empty. I saw him straight away, no waiting. He was relaxed and had time for me. He’s referred me to ENT. All in all, I wouldn’t have got better treatment if I’d gone private.
Last week, Bridget had a telephone appointment with her consultant at which she was sympathetic, arranged an iron transfusion etc. I asked about prescribing Temgesic. At first she said she couldn’t find it on screen for RLS. I said it widely available in UK but off label (she called it off licence). A pause and sharp intake of breath. I told her all the info I’d got off the forum and said I could send her evidence of its success around the world and she gave me her nhs email address and I sent it through. I’m hoping to reinforce with more from Shumbah who seems to be the worlds RLS expert in opiates.
I suppose it’s understandable that doctors get defensive when faced with something they know little about. If you go in armed with loads of information they might think they’re getting ambushed. Usually they’re harassed thinking about the next 20 appointments so no one gets the best response.
I think this covid situation has taken the pressure off GPs and Consultants and they are open to being contacted by email or letter. (email’s better because there’s trackability and records kept).
And so my Thought For The Day is to urge all current sufferers to ring their Practices and get their doctors email addresses. Then sit down (or stand!) and write a long letter detailing all your misery in detail and how the drugs don't work and finally ask to be prescribed Temsegic 200mcg and include evidence of it’s success.
The request for Temsegic is important.
It’s our strategy.
It will make them think, because they will be instinctively against it. Hopefully they’ll refer it (with the evidence) to their Neurologists and if enough RLS sufferers across the country request it, more top consultants will hear of it and if they are inundated with requests, there may be a sea change!!
Just add you've heard of a new drug and want to try it.
The point here is that you are asking for a controlled drug and that concentrates the mind. It doesn’t matter if you don’t want the Temgesic or are opposed to it personally. Ask for it anyway to raise the profile of this foul disease. It’s a cheap drug so you won’t be wasting NHS resources and there’s plenty of evidence to show it’s likely to replace a whole raft of other drugs you’re likely to be on.
Lets give it a try! Let’s take advantage of this downtime and bombard them with torturous examples of day to day suffering and evidence of better drugs.
Thank you for reading.
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puzzler1
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Hi I have just got Buprenorphine 200micro grams of my doctor only after hysterically crying that i cant cope any more . He s been through this with me for the last 10 yrs although I've had it for at least 40 but didnt know wot it was then . I've been on every other drug they give u plus pregablin and the patch which o was allergic to the glue but the patch worked but unless u want red itchy Mark's all over u it's not really viable which is a shame . So I started last nite I'm stil on pregablin and pramiprexole low dose . .took tablet at 11 legs were going mad til 3 am so I wasnt meant to but took another I finally fell asleep for 2 hrs and then had more sleep after . Will it take sometime to get used to these i have i high tolerance to pain killers . I'm on nights tonite at work so tryin to sleep now b4 starting at 2230 . Again legs goin mad so Ive just taken one . Does anyone else have experience of this drug . I have messaged shumbah but not heard back just yet
Glad to hear you've been prescribed the Temgesic because that's what I'm after in the UK but terribly sorry to hear it's not working as expected. There are better informed people on this forum that may be able to help, but I know Jules1953 in Australia and Hausbauer in Austria have it and of course Shumbah takes buprenorphine which I believe is in a bigger dose. The results seem s to be promising so perhaps it's a case of adjusting the dose and gradually reducing the other drugs. But I'm afraid I'm not experienced enough to advise you on that. I'm sorry you're having a bad time because I know and understand exactly what that's like. Could you please keep us updated on your progress with Temgesic.
Hi well indont knowing it was fluke or not but I took one at 8 and a few minutes later my leg stopped !!! I'm up ready for work now but will keep u all updated because if we finally have something that helps we all need it . It's also helping my stiff neck and arthritis in hand lol
Hello , I commenced Temgesic one month ago now. At the time I was suffering badly with augmentation from being on Pramipexole. I was slowly decreasing my Pramipexole intake and changing over to Gabapentin.
Over the last month I have been taking Tamgesic sublingual 200mcg dissolved under my tongue. It must be taken this way as apparently it does not work if just swallowed.
It is important to slowly reduce current RLS medications while introducing the Buprenorphine sublingual 200mcg tablets.
My prescription allows me to take up to 5 x 200mcg Temgesic tablets over the night but I have never had to take more than 3 to get to sleep.
It helps to keep a diary of what you are taking and when you take it.
Especially when you are reducing the input of a number of meds.
It is important to slowly wean off other RLS medications and monitor how much Temgesic is required to get to a calm state to be able to sleep.
Last night was the first night I only used my Temgesic medication and I took 2 x 200mcg sublingual.
I had a good sleep.
I hope this helps , kind regards Julie from Westeen Australia.
Hi thanks for your reply I've had a few nites sleep but legs stil playin up a bit . It's good to know u can take more to start with as your weaning off other drugs and then get it back to just 200 mcg of temegisic. My doctor had me on pregablin I've only been on it 3 weeks and am running out I just wonder how long it will take to wean off as they are capsules and it's nearly impossible to even get a phone call with a doctor at the moment it's ridiculous
I dont know how long it would take to wean off Pregabelin. I know the Pramipexole (sifrol) is difficult to wean off especially towards the end.
The Temgesic can have the side effects of feeling nauseous and constipation. I have started taking Sennalax for the constipation.
I am still having to take a very small amount of the Pramipexole with the Temgesic to be free of the slight restlessness in my legs.
One third of 0.125mg Pramipexole.
One and a half years ago I was taking 3.00mg of Pramipexole.
I have been slowly reducing down off the Pramipexole and have suffered terribly with augmentation. Endone (oxycodone) 5mg helped me in the last stages of weaning off Pramipexole.
I have been taking Temgesic for one month now. I have been sleeping through the night.
As Manerva points out, Temgesic stops the effects of RLS, but does not deal with the cause of the dreaded condition.
Hi thanks again for your reply it's all trial and error isn't it were all different and rls has a mind of it's own. I only have 3 pregablin left so need to try and get hold of my doctor although he really doesnt understand it's me telling him half the time . I ll let u know how I get on x
I am so encouraged by your post and a few others lately where people are taking such a stand. Thank you. I've struggled to get agreement for Tramadol, I can't imagine the response to asking for Temsegic!
I am interested in you gathering the evidence from people on this site. I have been thinking about a similar idea - getting together people's experiences. My motivation to do so was in part to have something easy to give to friends and family. Coming to terms with a chronic and progressive condition is a big deal and when it is such a 'hidden', oddly named and so mildly symptomed on the surface 'your legs twitch?', it can feel as though you make a fuss out of nothing.
I seem to remember coming across a post from years ago requesting feedback for a pamphlet or publication. I don't know if anything came of it. I was not on the site at the time. Maybe there is already something out there. Does anyone know if so?
Hi Sue, thanks for replying. My letter to the consultant was in two parts really. My wife’s personal story and then excerpts from the forum with the success stories of Temgesic. My wife is trying to come off Pramipexol after about 8 years of use and it’s a absolutely terrible. And it made me wonder what happens next when she finishes with it. She’ll still have RLS but the other drugs seem to be just as bad. Then I read Shumbah posts about buprenorphine (which I don’t think anyone has a cat in hells chance of getting) but the micro dose Temgesic seems much more possible.
Regarding a pamphlet, I think people’s individual stories are much more powerful and I don’t see how doctors can ignore them. When you sit in the doctors surgery they type a summary on the screen. When you email them it’s your words. And they can’t just dismiss them so easily. Especially when you build up a picture over a period of time. My wife’s consultant said she was ‘managing well’ in a letter to the GP. I’m not quite sure where she got that impression!
I’ll may post the letter we sent, on the forum. It’s rather personal though and might leave my wife feeling A bit exposed.
Sorry for prattling on but I’m so appalled but the way the nhs have such a closed mind. But it’s a very delicate problem to coax them into taking a risk.
Please don't do anything that feels too personal for your wife, but if she is happy to have her story told that it would be welcome.
I've been reading this post with some interest.
I can easily sympathise with a lot of what you say and think you have put it quite articulately.
I do think some people suffering from RLS get a raw deal, wonder why that is and wonder what to do about it.
One of the issues I believe is the "NHS". The UK NHS is rated by the WHO as one of the best health care systems in the world and there are good reasons for this.
BUT
Perhaps some things that aren't commonly recognised by people is that in some ways the "NHS" does not exist. You could say "NHS" is a logo or a franchise.
There are in fact many independent organisations in the country which provide health care. Most of them are "NHS" trusts, that is because most of their funding comes indirectly from the government. GP practices are also independent and get their funding through a different route.
You may also note that some "NHS" services are provided by private organisations.
Because of this, the size of the system and the number of trusts, although some things are centralised e.g. the purchase of equipment it is quite a fragmented system with little coordination between the different organisations.
They also do different things and in different ways.
From personal experience, some years ago my local hospital trust identified I needed surgery, but they don't do it here. I had to go to another trust 20miles away. Some tests were carried out on what was removed. I was followed up by my local trust who did not get the test results because the two trusts systems do not communkicate with each other.
A short time ago my local trust identifed I needed a specific test. I had to travel 40 miles to another trust to have it and again my local trust didn't automatically get the result.
Similarly, my local trust used to receive funding from two separate "Clinical Commissioning Groups" (CCGs) One of the CCGs purchases health care for people where I live, the other CCG purchases health care for people in a neighbouring county. The trust has several hospitals, two where I live and two in the other county. Some years ago I needed referring to a specific clinic, I was referred and I did receive an appointment. However, I did find out that my local CCG does not fund that clinic, whereas the other CCG does.
Just to reassure you, at this point, the only "real" national thing about the NHS is US, i.e. patients. We are the NHS! It doesn't matter where you go as a NHS patient, no matter which organisation trust or private or where that organisation get their funding from, as long as it's got the "NHS" logo on it we DO NOT PAY.
I hope you don'ty think I'm just trying to impress you with how much I know, there is a point to this.
That is, although individual people may benefit from impressing their concerns on individual health professionals or on individual health provider organisations it's not going to be particularly successful in getting the "NHS" to change.
I could say here more about the unique role of doctors in all this, but suffice it to say licensed doctors have the right to exercise their "clinical judgement". In which case it is often impossible to get two doctors to agree.
As some other members have suggested, to get more recognition for the problems faced by people suffering RLS may need some nationally coordinated and political lobbying.
In addition medicines and their accessibility for RLS sufferers is dire, but the currently available medicines including opiates only suppress symptoms. They do NOT treat RLS.
More research needs to be carried out in relation to "treatments" for RLS and current treatments known to work for RLS e.g, IV iron infusions need to be made more accessible.
Thanks for your comments. I take your point about the NHS being a fragmented organisation and it may be difficult to raise awareness across the whole organisation as individuals. I think the problem with lobbying etc is that the group is seen to be just another group lobbying for something, and has to compete with the rest, which may better resourced. Also RLS is very difficult to explain to people because it's so wide ranging. If you want to stop fox hunting, for example, it's relatively easy because everyone understands it and you can support it or oppose it. However, in the long term I think you're absolutely right, lobbying or representation is very important.
But I do believe that in the short term we can immediately badger our doctors, to raise the profile as I suggested and asking for Temgesic or buprenorphine gives everybody a new reason to contact their doctor. It's the 'new kid on the block', not the old tried and not very good dopermine agonists, gabapentine, tramodol, oxy this and oxy that. And writing down how each person suffers with this disease is very powerful. Here's a thought, if everyone wrote 1000 words about how RLS had ruined their life for years and years, maybe we could collect them together and have them published (cheaply) and distribute them to politicians, health officials, media etc.
I'll post the letter I sent to our consultant and you can see what I mean. I'll have to change a few details and names to protect the innocent!!
With regard to expecting a cure, I think that's a long way off. All I want, is for my 74 year old wife to get a good nights sleep and be able to put her feet up in afternoon. That's not too much to expect in the 21st century, is it? And without a load of side effects so she can feel human again.
I've never thought there will be a "cure", especially for idiopathic RLS, but I'd hope more "treatments" could be researched.
This depends on more fundamental causative factors being discovered.
Iron deficiency is one such factor and hence iron therapy is a treatment, not just a symptom suppressant.
Diet is also a factor in some cases.
Other lines of research are looking at the role of hypocretins and adenosine in RLS.
Even more symptom suppressants with less side effects and complications would be well received. E.g. repetitive Transcranial Magnetic Stimulation looks promising.
Good luck with your pursuit of temgesic, there appears to be some evidence of it being appropriate in some cases and hence should be included as an option. I would support you in this then.
It won't be appropriate in all cases as RLS is multifaceted and not everyone prefers opiates for RLS. People need choices.
Puzzler you are a star. Your wife is so lucky to have you campaigning on her behalf. Pramipexole and Ropinirole are the cause of so much suffering and GPs have no idea how badly augmentation and withdrawal affects us.
I can remember sobbing in my GP surgery, begging for tramadol to get me off Ropinirole. She refused until my MS consultant wrote and told her to prescribe OxyContin.
I managed to get off Ropinirole without committing suicide ( and believe me I seriously considered it) and am in a much better place. I still get RLS at least once a night but it’s not as intense and I manage to get back to sleep within 20-30 mins.
We definitely need more activism. The US RLS foundation regularly meets senators in Washington and funds essential research. They advocate for opioids and warn against dopamine agonists.
If we all join RLS UK maybe we can ask for a vote to campaign for Buprenorphine/Temgesic and iv iron infusions?
I am going to follow your example and write a detailed email to my specialist at King’s College London, Prof Chaudhuri. His team have refused to prescribe Methadone or Buprenorphine because there is no research! And no funds to carry out research.
Ah yes, I remember Prof Chaudhuri. We wrote to him about 5 years ago and never got a reply! A shame as he's purported to be one of the country's leading experts. Sorry if I sound a bit bitter.
Thanks for your encouragement and I'll let you know how thigs develop.
Yesterday I got a reply from Dr B and he says they expect to publish their latest findings in a few months time which shows buprenorphine in a very positive light. He also attached an older document about use of opioids but you've probably seen it. I'll try and post it if I can work out how to upload a pdf doc onto the forum.
That is very good news from dr B about the soon to be published paper on buprenorphine for RLS. I hope he soon updates his patients letters page to include this reply to you.
I agree about Prof C. After getting off Ropinirole with help of Elisse and Pippins on this site I saw his registrar after 9 month wait. Stupid woman suggested the Neupro patch when I had clearly told her about hellish augmentation and withdrawal. I insisted she was wrong to suggest it as I would quickly augment on the patch!
They seem to be decades behind the latest research and best practice for RLS. They don’t agree with iron infusions either.
The UK is appalling for RLS treatment. I too get very bitter and angry.
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