In response to concerns about using opioids to treat RLS after having stopped using pramipexole, I believe they are legitimate and I share them. Opioids are physically addictive. You don’t need to have an “ addictive personality “ to become addicted to them. You can’t control the physical addiction part of opioid use.
My neurologist stated that to get off Opioids will require a similar process to getting off of pramipexole . It may feel different than getting off of pramipexole has felt…. Maybe not as difficult. I actually don’t know but for ME at least I don’t want to trade one physical dependency for another. And trust me, getting off of pramipexole has been torturous. I’ve had to take a rest because of my RS symptoms have worsened. And some people may choose to stay on opioids for life. I can understand that choice. Right now for me I don’t want that. I may feel differently in 6 months. But to state that physical addiction to opioids isn’t a legitimate fear minimizes the reality of narcotics.
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Julesjewels
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I understand your concerns, but have you read the following?:
"Where first line treatments have failed due to adverse effects or augmentation, low dose opioids are highly effective and do not generally lead to addiction or tolerance if patients are adequately screened and monitored. The Massachusetts General Hospital Opioid Study shows that long term, low dose opioids used in RLS do not lead to an increase in dose over long periods of time. See National RLS Opioid Registry:
"Opioids are highly effective in the management of refractory RLS, reducing daytime tiredness and improving sleep and quality of life, and thus should not be withheld from appropriately screened patients because of a fear of potential development of tolerance or dependence.
When opioids are used appropriately for RLS, escalation of dose is uncommon, and misuse is infrequent in the absence of a history of substance abuse"
Dependency for sure. But addiction maybe not. While the two words can be used interchangeably to mean physically dependent, addiction is different. Addictive behaviors include taking more medicine than is precribed, needing rapidly escalating dosages to achieve the same result, asking for refills sooner than scheduled, seeking additional medication from other physicians or from illegal sources. And you are right there is a risk for this to happen to anyone.
I get your concern. I have been using opiods for RLS for at least twenty five years. The dependency is absolutely real. Fear of having it abruptly cut off for whatever reason is absolutely real. It has made it nearly impossible to experiment and try new or even old treatments that seem intriguing because of having to go through the hellish process of getting off the opiod first.
The opiod works for my RLS but the side effect of severe insomnia is often as disabling as the RLS itself. It's a trade off argument I have with myself on an occurring basis.
I suggest anyone try all options available before turning to opiods. Everyone has a different journey and respond to medications in a variety of ways.
Sadly, anyone with severe RLS will be 'dependent' on meds for life. In the same way that I am dependent on my MS meds.Withdrawal from opioids will be difficult for most people. But as opioids are usually last resort medications- we will probably not stop taking them. So we will not need to go through withdrawal.
Unlike dopamine agonists- opioids do not worsen the disease (augmentation) and therefore RLS patients tend to stay on them for decades with no increase in dose.
Opioids are last resort medications.
Dr Winkelman has set up an opioid study to show that addiction (as opposed to DEPENDENCE) tends not to happen and nor does tolerance (increase in dose to maintain previous cover).
I understand your concerns.
But those with severe. refractory, nightly RLS have no choice, at present, but to take opioids.
Hi - I have participated in the study since it began. I have taken the same dose of Oxycodone for the entire time and it is a low dose. One issue is the short life of oxy in that after 4 hours I almost always have to take the second half of my prescribed amount which is 5 - 10 mg daily. My RLS symptoms will wake me up. However, I have decided that for me at this time it is better to get up and take a second dose rather than taking something with a much longer half life. There is alerting caused by opioids for some people and that has happened to me and sleep is not great, but without it, I would not sleep at all. It took me 4 attempts to get off of mirapex and I barely survived. Worst time of my life as far as health. I have not had any of the same withdrawal symptoms for oxy and do not feel any desire to take more and believe if I ever had to stop taking it that the process would not be near as debilitating as getting off of the dopamine agonist which I do believe made my RLS even worse in the long run. I took mirapex for 10 years and my symptoms worsened as a result.
It is a very difficult decision deciding what to do and how to treat, but all physicians who are prescribing medications need to do their research before advising their patients about treatment. That has been an uphill battle for me. Having to teach my neurologist about RLS and what is recommended for treatment. I wish you the best as you find the best treatment for yourself. Please take good care.
I understand your concern. I think of the downside of being on methadone but after having no decent sleep for years, and over past 3 years only 2hrs max broken sleep, I felt there was no choice. Other meds did not work. I worry about increasing dose and try to stay on 7.5mg even though RL breaks through. What is somewhat concerning is that the long term opioid study does show a very small percentage augmenting on opioids (I'm pretty sure I read the latest report correctly, If anyone thinks Ive misread that statistic please let me know). Yikes, I think to myself, I hope that's not going to be me!!! So I'm not comfortable with taking this but otherwise lack of sleep will be the end of me. All the best in finding a solution to your RLlS, it's a seriously miserable syndrome.
Oh, thank you so much Sue, for pointing that out! I'd forgotten about tramadol being somewhat different to the others. If it's that then I'll be very, very relieved.
I saw that too. It didn't specify if the augmentation were all related to tramadol or not. I wouldn't be surprised in the least bit if we find out in the future other opiods can augment. Maybe not as quickly as tramadol though. I never took DAs for more than a week so I never experienced augmentation from them.
Yet, after year ten of being on oxycontin I started to develop symptoms in my arms and upper body and also symptoms during the day. I just chalked this up to the disease becoming worse on it's own with age. But, as I think back it sure mimicked what augmentation looks like in those who take DAs.
Everyone is different and it may just be a me thing. Be interesting to see if anyone else out there has experienced augmentation like symptoms on long term opiod use.
hi ziggypiggy, I appreciate your reply very much. Like you I never took and DAs. I feel we must stay open minded about opioids and what this means for us in long term use. Do you still on take opioids? Oxytocin? If not, what have you moved to? I'm considering spending a year on cannabis as a break from opioids (just in case) but am concerned about withdrawl from methadone. I took cannabis for a year before methadone and it was quite helpful until I developed tolerance. I thought I could try alternating, a couple of yes on one then back to the other. I don't know if that'd work at all. Thank you again.
Yes. After year ten I increased my dose to 15 mg of oxycontin from 10. Then I added a daytime dose about five years ago. I'm on year 25. Lots of factors come into play on whether to try something else. I've had the same doctor the whole time and he said their is no guarantee that when he retires, which is approaching, that the next doctor will continue prescribing the Oxycontin. Eek!
If your able to go off and on the methadone without too much trouble that's great. Everyone is different. Do what's best for your situation.
I should guess we should count ourselves lucky. There are lots of others suffering badly who don't have doctors that will even consider an opiod for relief. The patient should at least have a chance to see how they respond and decide along with their doctor on how to appropriately use the opiod if the benefit to quality of life is worth the potential risks.
well said in your last paragraph ziggypiggy! I so agree. You've had a very long (good) run on opioids and it gave you the relief that's so badly needed. Continuity without fear is very valuable. I hope all continues well for you! It's daunting to consider your Doctor retiring, mine is due to do the same. If I get really brave I'll try an alternating regime with cannabis...I only need to do a trial once, then I'd know if it's do-do-able or not.
As long as you know that your doctor will put you back on opiods again than I agree try cannabis. That's a chance I'm not sure I could take. May be unethical but I would probably try the cannabis on the side while still filling the methadone prescription to ensure it being there if cannabis doesn't work. Also, it never hurts to have an emergency stash of medicine for emergencies. Especially if you get cut off unexpectedly and need to taper yourself off of the med. Good luck. I hope cannabis works.
I’ve been taking Belbuca (buprenorphine) for a few years now, and no addiction and no increase in dosage. After augmenting on all the dopamine agonists I could handle, I am SO relieved to find something that works so I can get some sleep. Is my sleep perfect? No. Sometimes something will make my legs worse than usual (usually diet or too much walking), but I have found that the herb skullcap really helps calm the mind. I take a cup of skullcap tea right before bed, and have about half a cup on my nightstand to take if and when I wake during the night.
The only caution I have re taking opioids is that they tend to suppress breathing. I don’t know if my sleep apnea is due to the opioids or just my bad luck, but I am very careful to take the lowest effective dose of the opioid. If the apnea (central and obstructive) is not caused by the opioid, then the apnea is potentially made worse by the drug. Just a heads up for everyone.
I am one of those opting for Buprenorphine after 25 years on DA and a hellish period of augmentation and withdrawal. I thought long and hard about which options would be best after the DA and looked at the profile and side effects of the Gabapentanpids before coming to a decision. I took the advice of professionals at the forefront of this research and was reassured about the safe long term use of low dose opioids in these circumstances. Some of the terms and words used in the media are very alarming and can be emotive, addiction, dependency, suppression of respiration etc. all legitimate concerns but they do need to be considered in context. Every medication carries risk and it is a question of risk benefits ratios really and being able to make a fully informed choice. Those of us prescribed DA years ago never had an informed choice, the drugs worked, augmentation was not well documented at that time. We also have widespread use of many ‘everyday drugs’ sold over the counter in the UK that carry risk and alcohol is both a toxin and a potent respiratory depressant, but people choose to consume it for social reasons.
All we can do as people with a lifetime condition like RLS is gather and share as much evidence based information as we can, listen to wise council, follow ongoing research and make our choices with our prescribing physicians. My quality of life on years of two hours sleep with severe augmentation was poor, my immune system and cognitive functions were undoubtedly being impaired by this chronic lack of sleep. I was a health professional with a background in pain management and I had no hesitation taking Buprenorphine for my refractory RLS. It has changed my life and I accept the balanced risk that comes with all medication. I will likely take it for the rest of my life unless new research finds something better. When I consider the alternatives, I feel very fortunate to have found something that works so well. I do hope you find something that works for you too. Its great that we are questioning treatments, and making choices that are right for us as individuals.
Addiction and tolerance are two different things psychologically. It is normal to become more tolerant after only few weeks of opioids. That doesn't mean you are addicted like a drug addict. There are lots of medications that require tapers for various physiological reasons, steroids being one very common one. You aren't addicted to steroids, but you can't stop them suddenly either. The CDC recommends that anyone on opioids for more than two weeks consider the need to taper. That would include tons of people who have had major surgery of any type. Chances are RLS is lifelong. Sleep deprivation is one of the worst things for a body. So don't shy away from opioids because of some theoretical dependence possibility, especially if your sleep is compromised.
Thank you . I appreciate all these comments. I am not closing any doors; I am merely aware that this is a very big decision. Lots of these stories include unexpected challenges using opioids so it isn’t a foolproof solution. Sleep deprivation resulting from chronic RLS is life altering. However, many acknowledge a side effect of opioids has been insomnia.
Having titrated down from 3.5 mg mirapex to .5 + mg in a 16 month period has been worse than imagined. I suspect the decrease ahead will be as hideous. And it isn’t clear what my RLS symptoms will be when I eventually stop using DAs. I know the damage to my receptors could be irreversible given the length of my DA use.
Opioids may be my only option ultimately. I simply understand why fellow DA sufferers are wary. We all once thought DAs might solve our RLS troubles……
Sure, you're trading one drug for another. But it seems the smart thing to do if the one drug (DAs) loses its effectiveness and the other (low-dose opioids) allows you to have 8 hours of sleep for the rest of your life.
Except for an about two years taking Pramipexole I’ve been on Oxycodone for most of the last ten years. I have no intention of coming off of it as I see it as the same as someone needing insulin for diabetes. Studies show that people taking Oxy for RLS don’t crave higher and higher doses once they are on the correct dose to ease the restlessness. In fact, last May I decreased my dose on my own as I felt it wasn’t necessary. I wish you success in finding what’s the best treatment for you. 🙏🏽
Hi Jules. I take 30mg of codeine every alternate evening and they’re a game changer for me. I don’t crave them, or feel any addiction, nor have I developed any resistance or tolerance, so it must vary between people a lot. I’m really relieved to be able to lie still in bed and sleep soundly. The lack of restlessness and movement is a true blessing.
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Miserable on buprenorphine 
Opioids
pregabalin 
Rls
Have You Tried a Dopamine Agonist?
