54 yr sufferer here: SEVERE RLS in legs, hips and arms) with PLMD (I thrash 250 times/hr while asleep).
FINALLY, relief: low doses of Methadone and Morphine taken over 6 hrs (5-11pm) have changed my life. I have had to increase both slowly, but I’m 75 so who cares?! No addiction problems.
Also lots and lots of Colace to prevent constipation.
Also, for breakthrough symptoms, 100 mg Gabapentin works within 10-15 minutes.
Finally! Relief!
Always good to hear such success stories.
Wow!! Only 75 and on Morphine and Methadone?? Etc? Glad it helps but be careful. I worked at a Methadone clinic for years and if you are taking either one of these opiates then you are addicted. Try getting off them, nearly impossible. I have seen young and old people alike be destroyed through Opiates. Methadone and Heroin are basically the same which is why we have Methadone clinics to begin with. We started them to help Heroin addicts that were returning from the Army etc. and getting to lead a somewhat normal life with their addiction, etc. If you've never seen anyone coming off of Opiates,or yourself, then you would understand, it's a horrific experience. I was one of 8 counselors with over 50 patients each and the only one with a successful response to treatment (which means over a year period of time he was weaned off of the Methadone). Sadly that is way it is. Methadone side effects are life altering and basically killing you. Your Doctor should be ashamed. I say this because it appears you haven't researched much about Methadone and it's effects. I hope you do so. Take care
Hi Remeuno, I read your response and well don't get me wrong but I think doctors who are prescribing methadone for RLS are absolute experts. I acknowledge the threat of addiction with methadone or opioids but for RLS, we're talking about really low doses without the need to increase them. Tolerance happens and so does dependency but then again, RLS is life-long. It isn't going to go away no matter how hard we try.
If we're having to take DA and they're making our RLS worse, they are as dangerous as opioids. Getting off dopamine agonists is really tough as well. I know because I've tried thrice to get off them. Each time I couldn't get past a month without them. But I'm not addicted. It is something that I need to survive. We all want to be medication free but we can't live without them. We have people here on this forum who have been on methadone and their life has been changed for good and they've been on the same dosage for years. If something is allowing us to lead a normal life, I don't see the harm in it. If I could get any doc to prescribe methadone for RLS I would gladly agree to that.
The key difference here in a nutshell is the doses of opioids. For de-addiction I think some 60mgs for Methadone is prescribed. I'm not sure you must know that because you've worked in such centres. However for RLS, it is 5-20mg. Most people find relief b/w 5-10mg.
There are side effects...read them. Visit a Methadone clinic. Make it real, words are simply words. Be the change!!
To Heathers point, I’m not sure why being “addicted” to something matters if the plan is to take it for the rest of ones life. I understand where you are coming from seeing people struggle to come off of opioids. I’m sure that’s a horrible thing to have to watch. However, if someone is able to get relief through opioids and are able to take a low dosage for the rest of their lives, isn’t that better than suffering? There are a good number of people on this site that have found long term relief through opioids with minimal side effects.
I understand exactly. I have suffered so much as well from my RLS. Finding an answer is more important than anything because we are trying to be productive people and it's hard when we are mentally and physically exhausted. Methadone, over time, has devastating physical side effects. For myself, I would not choose a treatment that destroys my body, even at 59. If I can enlighten someone than that's all I hope for.
I agree with Heather.
Severe RLS is incurable and lifelong. Opioids are last line treatment and extremely effective at low dose.
We are not ‘addicted’ to our meds; we are dependent on them in the same way diabetics are dependent on insulin. Severe RLS has the highest suicide rate of all neurological diseases. Without medication, suicide is much more likely.
Dopamine agonists are far more dangerous than low dose opioids for those of us without history of abuse. Withdrawal from DAs is life threatening with a high risk of suicide.
Have a look at the latest study into long term, low dose opioid use. This is funded by rls.org and carried out by Dr Winkleman at Massachusetts General University Hospital in Boston.
I accept there is an opioid abuse problem BUT for RLS, the doses are far lower than for pain & prescribers have to ensure patients are suitable ( no history of drug, alcohol, or other abuse).
mcusercontent.com/068feaf31...
Opioids are life savers for many with severe RLS.
I guess I'm jaded! After having seen the side effects of Methadone every day for so long as a Counselor in a Methadone clinic. It ravages the body, young people grow old very quickly, their bodies deteriorate over long periods of time and their minds as well. There's more and I wish all could see first hand so that they can make their decision. Most patients never were addicts but became one because they become immune to the effectiveness over time and you have to increase time and time again. I've come home crying more times than I like to admit to. I augmented for 2 weeks after 5 years and ended up in a psych ward because I was suicidal. My Dr. there persuaded me to go back on. I finally did and it's been 6 years now. Not everyday is perfect, I have RLS in arms and legs. I deal with it all day and it's worse at night. Some nights I still have the RLS, about once a month maybe but I'm not pacing all night and can't sit or lay down as it is with no medication. I take 1.5 mgs. in morning and half at night. I just want to make others aware so that they make the best decision.
I really feel for you. I was on Ropinirole (Requip in USA) for 14 years and suffered severe augmentation. Like you, it moved to my arms and then my back and face. I couldn’t sit still in the day and became so wound up and irritable. Withdrawal was hell on earth. I’m not surprised you ended up on a pysch ward. I nearly didn’t make it through.
However, it seems your doctors didn’t know how to treat dopamine agonist augmentation and withdrawal as you should not have been advised to restart them.
The majority of doctors have no knowledge so it’s not surprising- that’s why we have to do our own extensive research on this disease.
You should have been advised to reduce very slowly- minimum 3 months. Getting off dopamine agonists is more difficult than getting off heroin for the majority.
Alpha2delta ligands like gabapentin, Gabapentin enacarbil ( only available in The USA) and pregabalin are now first line treatment for RLS and would have been the better decision for you.
If you’re back on DAs, you’re probably already back in augmentation.
If you decide to get off them, do it as slowly as possible and find a doctor who knows about RLS to help you through it.
Getting off Ropinirole changed my life. I can sit for long car and plane journeys, have no daytime RLS and when I get it at night, it is much milder and I can get back to sleep within 10minutes.
Opioids at very low dose have been a life changer.
Do please read all the posts on here and you’ll see that the majority of people suffering terribly are on dopamine agonists.
Also, I just posted a link to the rls.org site for reduced membership. The USA site has details of support groups and specialist RLS centres. I presume you’re in the USA?
A nicotine replacement tablet stops my RLS immediately. Check with doctor if you are thinking of trying this, although it is available in any chemist.
Nicotine has been reported to help some people’s RLS so you are not alone.
I have actually tried the nicotine patch ( and chewing gum) after reading that it helped someone on here. I will try anything!
Sadly, it did nothing for my RLS.
Thanks for posting though as it may help someone else.
Oh sorry to hear that. Maybe the concentrated dose in a tablet may help. Good luck x
I doubt it. My RLS is severe- probably caused by multiple scars in my spinal cord ( MS related). Sadly, we are all different when it comes to alternative remedies. Diet and supplements ( low FODMAPS, zero carbs, low sugar, low oxolate, paleo, magnesium) seem to help a minority of RLS sufferers but the vast majority will need medications to relieve the daily symptoms.
Glad you’ve found the simple, cheap solution that works for you.
I hope it will help someone else.
I feel really sad reading your post. Do you think people choose to have this disorder (which is actually in the process of being more formally changed to Willis-Ekbom disease. Which makes it a disease)? Would you say the same to someone who had to take insulin for diabetes? Every man and his dog knows about the addictive potential for opiods - but aren't all medications effectively addictive if u need to take them long term? This disease has no cure- it takes life long management to control and give you some quality of life. I have been to a place of wanting to take my own life from the extreme sleep deprivation of this disease - and after going through 10years of medication attempts and failures, opiods are the only thing that give me relief. I have the backing of clinical medical directors in the United States as well as professors who are trialling the use of opiods for this condition. I think it is hurtful to say this person had not done their research. I could get a degree in RLS with the research I have done and the specialist I have seen. I completely understand your point of view - but perhaps you could look at it from a different perspective?
Absolutely agree with you. Most of us have large files with RLS research papers and know far more than our GPs and neurologists on this subject. Many of us on this site are taking part in Dr Winkleman’s opioid study and know how life saving low dose opioids can be for this condition.
Do u know if Dr Winkleman is needing extra participants for the study?. I have spoken with a woman who has personally been to Dr Winklemans house and he said that funding is becoming a major problem. I wish I could win the lottery to contribute to more funding for research.
Methadone is not given in high doses for RLS. I dont know of anyone who is/has taken methadone for RLS has become addicted, dependent yes. like all meds anyone takes for any chronic illness that their isnt a cure for including RLS, we become dependent on our meds that is different to be addicted, Being addicted is craving for the med, you NEED to take it but not to take care of your condition but your body is craving more of it. As someone else has said, getting off a dopamine med can be horrendous coping with the withdrawals. And opiate and methadone is recommended by the RLS experts as better than a dopamine med. I wish here in the UK our doctors would prescribe methadone, but the UK doctors are not up with the latest use of certain meds which can help. The only reason no one should think about taking any opiates is if they have been a addict or they have a addictive personality. For me, i have a low tolerance to all the meds including opiates. So find any med including opiates a struggle to get my RLS under control. Those who can take them they are lucky to find they can take them long term and i wish them all well.
I was so sad to read your post, Ladylaughs. What I fear is that there will be some sufferers of this dread RLS who would have had their lives changed by this low-dose methadone therapy, but will not be willing to try it because your words have made them afraid. Just 10 mg per day, duly prescribed by an expert specialist, have given me my life back. In the blessed two years since I've been allowed this regimen, I have never needed to increase the dose, nor do I ever expect to, based on the experience of so many others lucky enough to have found a doctor experienced and courageous enough to offer it to their qualified patients.
I have been on low dose morphine for five years now after having tried everything else including methadone. The morphine works for me as long as I take it at 5:00 pm. If I forget (can't believe I still do) and restless leg starts then it takes forever to work to stop the RLS. I am on the same small dose that I started with. So thankful that this works for me. I am 65 and have had RLS since I was a child. So glad this works for you.
Venofer
Treatment at MS Therapy Centre
Nightwalkers Magazine from the RLS Foundation and opiates
what drugs are opiates
LDN treatment for RLS
