Hello, everyone. There seems to be a bit of a disagreement between my sleep health doctor and my neurologist. While my neurologist doesn't think I have RLS, my sleep health doctor does. Anyway, I've been really tired a lot during the day and was worried my sleep apnea had come back, so I did another sleep study. I got the results today and luckily I don't have apnea again. The doctor said my tiredness during the day was likely because I wasn't getting good sleep at night because my legs were moving all around all the time, most likely because I wasn't on any RLS medication. Long story short (too late), since we've tried everything else with no luck, he wants to try 2.5 mg of methadone twice a day. I haven't done any research yet, but that sounds extreme to me and I'm a bit reluctant to try it. In my mind, methadone is a serious drug with dangerous side effects and risks. But maybe this dose is small enough to be effective yet safe? I don't know. What are your thoughts/opinions? I'll hang up and listen.
Methadone... good idea or bad idea? - Restless Legs Syn...
Methadone... good idea or bad idea?
I saw that it's being used but didn't give the dosage.. some say that Methadone is
their favorite to treat RLS. Some like other ones. Did you start up on any RLS
medication as is dopamine? Let us know how things are going should you
choose to use methadone. That's a new on for me. =)
I've tried everything: requip, mirapex, nupro patch, horizant, tramadol, neurontin, klonapin, magnesium supplements, vitamin d, tomato juice, massage, physical therapy, etc. I'm reluctant to try the methadone because, for one, I've heard it rots your teeth. 
my GP suggested tonic water with or without the gin for my RLS.
I tried that (was recommended because of the quinine). It tasted absolutely disgusting and didn't work at all. Hope you get better results.
Did wonder if it was any good can we not get quinine from any other source? I agree about the taste.
I don't know where you are. I'm in the US and they stopped selling quinine pills here because they were causing heart attacks (or something like that). I don't think there's any other source.
Quinine doesnt help RLS, but cramps, this is the info i found on quinine and its harmful affects.
peoplespharmacy.com/2010/10...
Thanks for that will check it out. I just read ookla's reply and I think it sounds something to avoid. back to the drawing board.
Just in case someone looks at this for reference. Methadone DOES NOT rot your teeth out. You are thinking of like crystal meth something that you can buy on the street. Also at low doses methadone is not addictive or dangerous. I took 10 mg of methadone for 13 years with no need to escalate the dose. I'm disturbed by all the negativity about this drug and lack of knowledge in this thread. Their are a certain percentage of people who have RLS who have something that is called refractory RLS and are resistant to all the usual suspects for treating RLS but opioids at very low doses have proven to be the gold standard with methadone one of the best. I also had no withdrawal from the drug because I was on such a low dose but I'm sure if a person was concerned they could have their doctor wean them off of it. Methadone is certainly no more dangerous or addictive then morphine! I'm sorry if I seem snippy but I think you some of you on this thread are doing a terrible disservice to someone who may have been prescribed or are thinking about trying methadone and done very well on it but you scared them off with things that are not even true. We need to be careful on this forum and only speak to what we have experience with and not make guesses or say this is what I heard. Please. This medication saved my life and now that I once again found a doctor to prescribe it hopefully will do so again. The sleep clinic that I used to go to took my methadone away and because of that (and because the medication my PCP, Mirapex, gave me terrible stomach pain and diarrhea) I went for five nights/days of zero sleep and went to urgent care once and the ER twice because I wanted to kill myself. I could not lie down, sit down or even stand still and it was constant and unremitting. All because no one would prescribe an opioid with the crisis that is now going on. I'm currently being maintained on Requip until after I have a CPAP titration study (unfortunately I'm only mildly apneic but with the methadone my doctor doesn't want to take chances) and am settled. If it weren't for the Requip causing rapid weight gain because I became one of the unfortunate people who want to eat all the time. I fought the best I could but it is such an overwhelming compulsion. Anyway, I gained back 15 pounds I had lost and as such my neck became fatter again and encroached on my windpipe while I was sleeping. Now I have to lose all that weight all over again and more so I can get rid of the CPAP. Anyway, please just be careful what you say on these threads. They will be seen again by people looking for guidance in these areas. Thank you, Sus
Hello ookla, so you are still wondering if whether you do have RLS or not.
The sleep study should have shown if you have PLMD, as that will make you feel as if you havent slept at all, also if your legs are moving around at night then that is PLMD, happens while you are sleep.Glad the sleep apnea hasnt come back. I havent any experience with Methadone, but i do know some people have used it for RLS.
If no one can give you the answer you need, then go to rlshelp.org i know the doctor on that site has used methadone for some of his patients. You could email him and see what he says about your symptoms and the dose of methadone you have been given to take. ..
Thank you. I was just trying to remember that website. I'll send the dr an email.
Elisse, Rahim and I were discussing Methodone for treatment of another disease.. then I saw your post. It's a goodie.. do you mind if I copy it and send it to Rahim in a PM? I will give you the credit again for this post.. XX Karen
Just caught up with your comment. Yes go ahead and use it, if it helps some how. 
I tried Methadone for five months but I could not stand it, I got terrible side effects and went really sick from just 5 mg per day. Now a couple of months later I heard another pain doctor saying that RLS/WED patients does not react good to Methadon.
It is an old wellknown drug, but be careful! I think you shall try morphine before you try Methadone
Thanks for responding. I hope you don't mind me asking, but what were the terrible side effects? Did it rot your teeth?
No, it did not affect my teeth during that short time of five months. You have to take extra good care of your teeth while taking any drugs and specially opiods makes the mouth ( body) very dry. But it made me sweating incredible much and I had a bad nausea with daily vomiting, head ache and tremor and I was very dizzy. I took 5 mg.
Thanks for the reply. Hopefully starting at 2.5 mg will help me avoid the vomiting. Since other narcotics make me vomit, I won't be surprised if I can't handle it.
I guess it depends on the source..I was reading up at rlshelp.org and
saw on the question/ answer part that some are getting excellent
relief..one thing that I did notice is that if a doctor is willing to prescribe a pain pill, the dosages being prescribed are very light compared to if one of the staff doctors at the RLS clinic was treating me. Some of the patient letters state
that the doctor prescribed double the dosage that I ever was offered..
Morphine is incredibly powerful to knock out pain..doesn't it wear off more
quickly though meaning that you could wake up to pain in the night? For me,
I would want a patch or something to make it last longer...
I had good relief from my Fentanyl patch of 12 microgram even if I needed to take morphine in the evening to get me through the nights. My problem was that the 12 hours pill only took 7 hour to get through my intestinal due to my ileo ostomy.
ookla still isnt sure whether its RLS, as the neuro and the doctor are saying different things. Methadone might not be the answer for treatment if its not RLS. Thats why i suggested emailing Dr.B telling him the symptoms and that methadone has been prescribed.
Thanks. I emailed him this afternoon. Just waiting for a response. The neuro doesn't think it's RLS because my legs hurt sometimes when I wake up in the morning and none of the other RLS meds have worked (except for tramadol until it gave me sleep apnea).
I have RLS 24/7 no break from it have tried every meds going non works for still trying find the right combo of meds my legs hurts due to fact they're always on the move so yes it's possible you get pain with RLS can't remember last time i actually sat and watched a movie all way through lol , I'd give it serious thoughts before trying Meth it can be as bad as the stuff they orginally used meth for to get folk off drugs and the side effect just as bad coming off meth cold turkey..... but guess that depends on doseage good luck with everything
Let us know what answer you get. I know this has been going on a long time for you. Not knowing whether its RLS or not. If your legs hurt in the morning that could be from thrashing them about in your sleep, thats why i asked if PLMD was mentioned in your sleep study.
He didn't say PLMD, but he did say my legs were moving a lot during my sleep and he thinks that's why I've been feeling so tired during the day (i.e. the constant leg movements have been disrupting my sleep)
Then that sounds like PLMD to me, that happens while you are asleep, hence yes, you dont get proper sleep and feel so tired the next day. And so sounds as if you do not have RLS, that stops you sleeping. Have you looked for any info about PLMD to give you a better explaination...
Starting to look into it now, will look into it (and methadone side effects) a lot more tonight. It would be great to find a way to keep my legs from hurting all day long and not have to keep squirming all around and be able to just sit still and relax.... but, so far, it doesn't seem to matter too much between RLS and PLMD, both seem to have the same usual suspects for treatment (Parkinson's disease drugs, anticonvulsant medications, benzodiazepines, and narcotics). Since I've already tried all those, looks like methadone is up next either way.
Yes i agree Elisse PLMD is when your asleep, RLS would keep you from sleeping
I have read that PLMD is a more severe form of RLS. I have RLS that prevents me from sleeping most of the night, but when I finally fall asleep I also have very severe symptoms that I am aware of the whole time I am asleep, so surely PLMD is a more severe form of RLS. I also read that you only develop PLMD if your RLS goes on undiagnosed for a long period of time. I went undiagnosed for 10 years and over the years my legs went from being restless to very very painful while asleep. And because of this they still can't get the correct medication for me yet because my symptoms are so severe
RLS and PLMD are both different conditions. You can have PLMD and not have RLS, or you can have both, or you can just have RLS. If you have PLMD you are asleep and not aware that you are kicking or thrashing in your sleep, the PLMD while asleep arouses your brain hence you do not get the restful sleep and feel tired the next day. RLS, yes we know stops you from sleeping, and to get relief most have to get up and pace. Pain is related to RLS, for some, never heard of pain from PLMD unless its because of the thrashing your legs while asleep. I also have never heard or read that going undiagnosed for RLS that you develop PLMD. Not sure i understand how you are aware that while you are asleep you know you have severe symptoms.?? RLS is neurological, i dont think they understand why people have PLMD, i dont think that is neurological. I will see if i can find some good info to send in.
Yes you are right about the medications they are used for both conditions unfortunately...
I have only heard about methadone being used for this disease over the last couple of weeks. And was shocked when I heard this drug mentioned. As a fellow sufferer with VERY SEVERE symptoms, my doctors still haven't got my medication right after 3 years of experimenting with different drugs, I personally would be very scared and reluctant to take methodone as you are right that is a very heavy duty drug and it is my understanding that this drug is much more addictive than heroin when used by heroin users. Please make sure you thoroughly research this drug before going ahead with it, I would only take this as a very very last resort and believe me I have been suisidal because the doctors can't get my symptoms under control. I know that sounds like a contradiction in itself but I am trying every other drug that has been prescribed for me, and I was very much against taking medication unless absolutely necessary, but now I am doing what the doctors are telling me to try and one day get it right, but if don't think I could agree to taking methodone
I have tried Meth and it didn't help. Found that drugs such as mirapex or requip work much better. However I have met people who say it works very well for them. I think in small doses it probably would be ok for you. Depending how severe your situation is, my RLS is one of the worst cases my neurologist has witnessed and he put me on fentanyl which is a strong opiate. At 37.5 patch every three daysI became severely depressed and couldnt function but 25mg worked really good for quite awhile with no side affects. Still eventually you need to increase so I went back on mirapex and dor me it works best. Good luck in your search for the right drug. I know take 2-.25 mg of mirapex, one around five P.m. And one around 8 p.m. Add two tenasapam to add falling asleep and the combination works great. However mirapex can cause OCD mostly with gambling so beware of that side affect if you go that route. Again good luck!
Some people need very little drug to have a huge effect no matter how bad the symptoms are..and some are just the opposite. It's so hard to judge if it is one or the other going on with you BUT the good news is that both are treated very much the same..the legs are causing us exhaustion, preventing us
from getting the deep sleep that is required to refresh us..
I heard you say that Apnea is in the picture especially when you take something such as Tramadol...did you ever have a non drug induced apnea test?? Apnea in itself can drain the life right out of you...you could have it all the time and just not be aware of it...
We have at least one lady on our forum that gets incredibly sore muscles, has pulled a muscle actually with the force that she used while having an episode of PLMD...
Have you ever watched a dog running in their sleep? Some have their legs gong a million miles an hour and they might even bark in their sleep? A sleep specialist has said that people with PLMD do the same thing..usually dreaming isn't involved..though..but out legs do that sort of thing all night long..
Our bed partners are usually the complainers and the person with PLMD says that they slept just fine..Now after you two were discussing it openly,
I am beginning to wonder if the doctor is truly hearing what we are telling them happens to us.. I think that PLMD does wake us up..we kick around covers and have to chase them when we get cold...it's a struggle to keep
pillows on the bed and blankets over us while we sleep..xxD
Some years ago I suffered terribly from pain in my legs. I do have severe RLS, but the pain in my legs at that time, had a different cause. A friend told me about Mannatec ( not sure about the spelling anymore), which is a nutrasitical ( wrong spelling) networking company in the USA but I believe their products can be bought in other countries. Maybe someone on this forum will know. In spite of my spelling mistakes, I need to tell you, that after taking their products for just a few days the pain in my legs totally dissapeared. It felt like a miracle to me at the time. My body was lacking some kind of minerals and nutritions, so when I took the M. product for just a few days, it felt like I was lubricating an engine which had run dry of 'oil'! This was 12-15 years ago and the severe pains in my legs have not come back.---As mentioned, I do have severe RLS and take Ropinirole as well as tramadol etc., and I do get pain in my legs from that condition as well but it is not the same severe pain as the one I suffered from lack of nutritious elements. Perhaps eating a whole lot of greens or taking a supplement with similar ingredients will help with the leg pain, as it did for me those years ago. I would try it before anything else like methadone etc.
Bad idea !! I've been on it 12 years and it's a horrible addiction plus it's hard to come off the stuff even a low amount as it's stores in your body so it just builds up. Can you not try another way ?? I strongly recommend you don't do it. I'm clean from it 7 days and I was only on 7ml and I've had no sleep horrible withdrawals. So I would not recommend this drug to you but that's my opinion totally up to you hunni xx
Thanks for the response. I ended up giving it a try for a week and had horrible side effects, so I stopped taking it and moved on to other things. Still haven't found anything that works, though.
Try a tablet called quinine x
We don't have those here. I did try tonic water (which has quinine in it) and besides not working, it tasted gawd awful.
Don’t take methadone!! It works yes.. it’s a low dose yes... but it is EXTREMELY addictive!! More so than most drugs!! I was put on it and it has taken me 2 years to slowly come off of it!! Now my RLS is worse than ever!! Especially while coming down and off of methadone!! I would only turn to this drug if it was a last resort or I knew I would take it for the rest of my life and never ever miss a day! It also takes several days up to month to get past the withdrawl effects after taking this drug! It isn’t until around the end of day two or day three before the worst withdrawals start!
Have you tried other opioids? Is methadone the most difficult to discontinue?
I must say that even though the withdrawal process from OxyContin is a significant deterrent I would probably still be taking it if it hadn’t been for the nocturnal alerting problem. I suspect that most people who take methadone (or any opioid) for rls are truly at the end of their tether - and have run out of treatment options
This whole thread with what is said about methadone should be taken with a teeny grain of salt. I took it for 13 years at a dose of 10 mg and never had to increase it and when it was taken away I did not have to wean off as this is such a tiny dose when you compare it to what a drug addict on it would take. It isn’t incredibly addictive and definitely NOT more addictive then heroin (and whoever came up with that is absolutely ridiculous) so that you need to fear it in fact there is a recent study how it is LESS addictive than other opioids. It isn’t meth either. That is a very addictive drug you buy on the streets that will and does rot your teeth out. It is methadone and often used to break the addiction cycle. There is not a “high” to it. I wrote more above if you care. Research the drug on legitimate sites and not someone’s blog who knew a guy that knew another guy who used to take this. Read something like the Mayo Proceedings, something written by Dr. Buchfurher or Winkleman, etc. It is a gold standard treatment often preferred by RLS doctors with patients who have refractory RLS.
I am currently in my second year of low-dose methadone (2 x 5mg tablets per day) treatment for refractory RLS. It has saved my life. I am here to back up 100% the above statement by "Not -methadone-addict." I am having NO bad side effects, and am finally getting 8 hours of zzzz every night. What a relief! So what if I have to take this medicine for the rest of my life like an insulin user? It's WAY better than only sleeping for 2 hours like I used to before!
But from what I read, methadone is rarely prescribed for RLS here in the USA, and not at all in the UK. Until this changes, there will me much needless suffering for many RLS patients.
You and me both. Same thing. 5 and 5 and sleep 8+ naps in the afternoon!
Thank you! Agree 100%
I took methadone for a while, and the side affects were so bad that I had to wean myself off of it. I went to Johns Hopkins to see a doctor who is an authority on RLS and he wanted me to go back on the methadone. I said no and told him why. He said that if I wouldn't take it, he couldn't help me. Methadone made me feel so bad and so sick. Never again. Good Luck!
Now I definitely don’t agree with that! No one medication will work for everyone and no one should be “forced” ever to take something they reacted badly to. That just doesn’t make sense, especially for an expert on RLS because they know that and tell people that all the time. So confusing....
I’m sorry,
Sus
Did he offer you a different opioid? Opioids are supposed to be the one drug that works for everyone. So long as you don't have intolerable side effects. If you were offered an opioid, threats usually the end of the line. You must have tried everything else first?
Methadone has no side effects for most people other than slight insomnia which can be combated by taking it earlier in the day. For me it has been a miracle not only are there no side effects but there's no high it's a extremely low dose it's like a microdose and allegedly people are supposed to be able to take it long-term and not develop a tolerance because it works differently in the brain of someone that's using it for RLS. it was the only drug that works for me the rest of them either head intolerable side effects or didn't work at all.
Tina, I back up what you're saying 100%!
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