The US RLS foundation have posted guidelines for the use of opioids in refractory RLS. If you’re having difficulty persuading your GP or neurologist to prescribe opioids, print off a copy and use it to help persuade them.
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Opioids for treatment of refractory RLS - Restless Legs Syn...
Opioids for treatment of refractory RLS
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Joolsg
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38 Replies
•
I have just read the paper on another group, written by some RLS doctors who know their stuff, a couple who some of us know from posting their website's on here. This paper has to do with whats going on with doctors not prescribing opiates for their patients in the USA , doctors that are under pressure to reduce prescribing them. That is why these doctors got together to do this paper.
Joolsg• in reply to
I'm very thankful that they did. Every bit of ammunition is needed to help those of us who have to rely on opioids as the only drugs left that will allow some respite from this ****y disease.
Happy New year Elisse, I hope you manage a little more sleep this year than last.
Docholiday1• in reply to
Do you really want to be addicted to drugs? Go down every road before the opietes.
I will try to be polite to you- clearly you do not have severe refractory RLS.
If you did, you would know that the only choice left to those of us with RLS this badly is to take opioids or commit suicide.
If you did your research and read the article, you wouldn’t make such an ignorant remark.
• in reply toJoolsg
My sentiments also but you said it better that I could. Also if docholiday has any info re effective rls pain relief info I would truly like to hear about them and would be happy to try them. I am open to any info that will lessen my rls pain. Respectfully, irina1975
Docholiday1• in reply to
Nicely put almost covered the sarcasm. I had varicose veins removed, used the 10mg ibprofen gel. Now moved to arms and hands. Sadly not sever enough for you martyrs on here.
Are you on requip or mirapex? Are you on any meds at all for your RLS? If it’s moved to your arms and hands and you haven’t slept hardly at all for months, you need to take something .
Docholiday1, There are many many sides to treating RLS. have you had a problem with addiction in the past, so we understand where you are coming from? Many people have NO choice , after trying everything else there is try, meds, home remedies, contraptions, massage, yoga, etc etc. After 40 years of RLS, and 27 of those spent managing RLS groups online, I can safely say that taking opiates are no more less safe than taking dopamine meds, et for RLS. Dopamine withdrawal is worse than opiate withdrawal. it is called DAWS, and that is why this paper have been written. I know more and more people who are able to have quality of life, can function, can GO TO WORK, because they are on the right combo of meds for THEM, and everyone has their own 'cocktail' that works for them. Treating RLS is all trial and error, Docholiday. This paper, if you READ it, will explain how and why this class of meds works better than other previously prescribed first line meds. Opiates are considered the main treatment now. So, I really suggest you do your homework on pain meds. I have been taking the same dose for the last 14 years, follow all the rules, have signed a narcotics contract with my doctor, only use ONE doctor, and ONE pharmacy. Everyone is happy, then. IF you live in the US this may affect you one day, and we have been waiting for this paper to come out for almost 2 years, so we are not going to dismiss it. This has been sent to every major medical journal, Mayo Clinic, Johns Hopkins, all written by doctors many of us know that have been around for a while. If you cannot take pain meds, then just tell us, but do not go right to the addiction route either. There is a happy medium.
Was addicted to lorazipam as a young man. Attempted suicide took my months supply after horrendous withdrawal. Only survived as had built up tolerance. I didn't see any video or know American government was trying to stop you accessing opioids
Nothing surprises me with Trump at the helm.
I am truly sorry that you had to go through that and it does explain your reaction to the post. I see now that you didn’t click on the link to read the article or listen to the video.
I do think however,that you should get more help from your GP. You may have low serum ferritin and benefit from taking ferrous Bisglycinate to get your levels above 100. You may have kidney damage from the overdose which could be causing the RLS.
Maybe you could take some meds for your RLS as it does sound bad.
As you have had addiction issues in the past, your GP could monitor you closely to make sure you take only the absolute minimum dose.
If they suggest dopamine agonists like Ropinirole, be wary as the withdrawal from that is apparently more difficult than withdrawal from heroin.
I do wish you all the best and really hope you can get some respite from your RLS.
People are not being snotty, they just feel strongly that opioids should be availablefor RLS.
I too developed a better understanding of docholiday’s position as I read more of his/her posts. He/she does say repeatedly that his/her objective is to deter those with less severe Rls from resorting to opioids which is a very fair aim.
Docholiday, I would agree with Jools that your symptoms sound really quite severe and must be causing you misery. I hope you manage to find relief from them. Joolsg is a very fair and measured poster and I think her suggestions bear consideration. One way or another I hope things pick up for you.
Has nothing to do with the President. There is a ridiculously awful opioid addiction problem in the US. The difference with taking it for RLS is that you can take low doses and may never have to go up in dosage. Let’s keep politics off this site. It should be a place we can all go to look for answers and support, not a place to bash politicians and or political ideologies
I was trying to warn people of the dangers of opioid. That a crime? Appears so on here.. Sorry I dont have it bad enough to make a comment.
It isn’t a crime. I was suggesting you read the report and watched the video. The title of my post referred to “refractory RLS “. That is RLS where all other options have failed.
In the USA, because of over prescription of opioids for pain and misuse of opioids by many people, doctors have stopped prescribing them.
This means that those people with severe, refractory RLS who have tried dopamine agonists, alpha 2 delta Ligands, benzodiazepines, diet, supplements, kratom, cannabis and every other available treatment are penalised because of this.
The article and the video makes it clear that opioids at low dose are very effective for severe, refractory RLS and do not lead to addiction unless there is a history of substance abuse.
Certainly people with mild RLS can make use of the other drugs I mention above ( but they also have side effects- particularly the dopamine agonists).
I simply asked you to read the article and watch the video before you made such a knee jerk comment.
Hope that helps.
How Sad that common sense advice is treated with abuse. I have tried most things FIRST and am now on Ropinirole and Clonazepam. If nessasary I will move on to opiates. That is what I was advocating for someone with early stage wrestless legs. Not advocating removing opioid as a treatment. If however you don't feel you can be polite. Bring it on.
Please point out where I have been impolite.
I was on Ropinirole for 16 years, suffered horrendous augmentation and traumatic withdrawal.
The horror stories on this website are all about Ropinirole and pramipexole.
I hope you don’t suffer either.
I recently posted the latest update on the Massachusetts Opioid study.
If the Ropinirole ever causes augmentation and you need alternative meds, keep a note of the study in case you have to ask for opioids.
I wish you a polite farewell, 3 years after my last reply.
No, we don’t. As we also don’t want to have this disease. And most of us who are on opiates HAVE travelled every other road. Which by the way involves equally heavy drugs.
And dependence on ‘drugs’ or meds is not the same as being addicted to them.
I was meaning people with mild cases. I dont need your snotty replies either. I have RLS myself.
I do find it hard to understand why you framed your post as you did. I doubt there is anyone posting on this forum who wants to be addicted to drugs. I doubt there is anyone who did not respond with despair and shock when they found that the only option remaining to them was opioids. The fact that so many take opioids nonetheless reflects how severe and miserable their symptoms are.
Moreover, it is not a case of addiction, rather of reliance/dependence. These descriptions apply in relation to all rls treatments. I took opioids to treat my rls and managed to discontinue them when they were no longer a viable option. Withdrawal from opioids is not something I would choose to do for fun but it was nothing like so difficult as coming off the dopamine agonist I was on prior to the opioids.
Could I suggest that if you wish to make a point, you choose your language carefully so as to avoid prejorative inferences.
Yes your obviously suffer enough to give me advice on trying to warn people. Unfortunatly I have not.
• in reply toDocholiday1
The replies seemed to me to be truly from the heart of patients who understand suffering and just want a way, if needed, to live with chronic pain.
Docholiday1• in reply to
I agree but I thought I might help someone new to the horrible condition.
• in reply toDocholiday1
Hi docholiday1. Just curious. Are you an MD? What do you take for rls pain relief. If you've found medicine that works I'd be happy to give it a try. Thanks, irina1975
Your post didn't say anything about 'mild cases'.
Oh sorry I will right a book on it. Then I might include every little detail.
• in reply toLotteM
Well said. Thank you, LotteM
Sadly I am not qualified to comment. I hardly slept for months Cleary not in your leagues.
• in reply toDocholiday1
Good point but sometimes too many other roads lead to a dead end. I try to take as few drugs as possible whatever my medical probs are. (I'm 73 ). And I am not ready to consider opiates for my ris yet. But there are nights when I am up more than not, crying and asking God to take the pain away. I'd like to know that should I ever need opioids'. help the government hasn't taken away my chances of an improved quality of life. irina1975 (US rls sufferer).
Docholiday1• in reply to
So sorry Irana I was meaning people who might thing the opioids will solve all there problems. They can cause as much trouble as they solve. They should always be available to people who have tried everything else. I hope you get some peace soon from this dam nightmare.
I almost killed myself while doctors were trying everthing else. I was prescribed to many drugs to count many with severe side effects and some were horribly addictive (I spent 2 weeks freezing to death while pooring sweat while being weened off klonapin) klonapin also caused me many neurological problems with memory and coordination (was very scary). For 9 months I never got more than an hour and a half of sleep while spending as much as 20hrs laying in bed trying to get to sleep felling like I needed to jump out of my own skin. I could have avoided over a year of hell and a scuicide attempt if opiates had been tried sooner. Its been known to be a highly effective treatment with as high as 85% of people finding it still worked after decades since 1685.
• in reply to
Thank God. Opiates have their place. Although abuse of these drugs in the US is at an all-time high, not everyone is an addict. And often they are the only tx that raises rls patient's quality of life. I would ask our government not to "throw the baby out with the bath water!" irina1975
Thanks for post , Jools.
Is this the definitive paper on longterm opioid use that was flagged for Feb / March publication?
This is very helpful. My consultant Neurologist wants me to stop taking Tramulief, a longer lasting Tramadol. I know that it helps me in that I once stopped taking it! I see her in April and I will be appropriately informed for the discussion. Thanks very much
Thank you so much for posting this Joolsg. I found this very informative and will pass this onto my doctor and ask her to watch the video too. Oxycodone certainly has given me my life back. x
I had my right knee replaced in August 2017, and was prescribed Oxycodone for the pain. Fortunately, I have a high tolerance for pain, and didn't have to take very many of them to keep myself pain free during rehab. My RLS disappeared while I took them, and came back when I stopped taking them. I didn't like the thought of taking them when I wasn't in pain, but found that if I took 1/4 of a tablet, that was enough to stop my RLS for the night. I told my nurse about it, who still thought I was taking them for pain. She said that 1/4 tablet wouldn't do as much as regular tylenol would. No new prescription for it, but when my pills ran out, I didn't have any sort of withdrawal. Now my regular doc has put me on iron tables and clonazepam, which works, but not always. I get desperate some nights and wish I had my Oxy back!
Hi gingerf21,
Did you watch the video on the link that jools posted? I always take any new info with me when I see my doctor and we discuss it. She always says that doctors can't be experts on everything and it's often through patients own research that they get to know the other ways to try and treat RLS. Worth a try! X
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