Have any one of you folks been able to try Methadone as a treatment for your RLS? I am currently on morphine and requip with limited success. I see it is successful for some but my doctors won't prescribe it unless they decide I am a full blown addict which I am not. Sure would like to get a break from the Hell Sleep.
Methadone treatment?: Have any one of... - Restless Legs Syn...
Methadone treatment?
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Merster
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Hi ive just joined I don’t suffer at all if I use Dihydrocodine I take 2 tabs 3 times a day it stops it completely 2 before bed I can sleep all night! Better option to ask for maybe
I've been taking Dihydrocodeine for about 17 years. It has saved my life as I was ready to end it all. My sleep is still broken most nights for a 3rd dose as the 2nd dose wears off and RLS drags me from sleep, and usually have to get up and walk around for about 20 minutes as it kicks in). I easily live with this, it's routine now. If I stay with friends or family I just explain why I need to be up for a short while in the middle of the night.
In recent months I've actually managed to reduce the number of 30mg tablets from six to five and a quarter daily, by cutting the 4am-ish dose to one and a quarter, which I'm finding is enough most nights.
Inevitably, this drug bungs you up a bit, and to counter this I've eaten two bars of Panda liquorice daily for most of these years (luckily, I adore liquorice).
I hope Dihydrocodeine continues to work as well for you as it has for me. I would have left this life long ago without it. My life feels almost normal.
Hi Merster.I presume you are not here in the UK.
Out of interest why are you on Morphine? For pain or for your RLS? If for RLS is it because the Requip stopped working?
Hey Joolsg. I had been taking low dose ms contin for severe siatica years before I had open heart surgery 3 yrs ago with no problems with the dosage . The RLS started shortly after my bypass surgery and has been rampant ever since. The requip stops the leg movement but lasts only a short time. The combination of the two sometimes works well and other times is useless. That is the frustrating part.
Thanks for explaining. The ms contin should have helped the RLS on its own at low dose twice a day.
Do not increase the requip dose- if the requip and ms contin together are not helping your RLS you should see your GP and discuss an alternative medication that may give you some rest
Make sure you are not on any meds that worsen RLS like most anti depressants & anti histamines ( inc cough medication).
Also check your bloods- anaemia can also cause Rls to worsen.
I have been on methadone for 5 months now.
I augmented early and badly on pramipexole, and for a few months I used small doses of methadone during breakthroughs rather than increase the pramipexole dose.
Now I am on methadone alone, and I have titrated down from 15mg to 5mg.
Methadone and oxycodone are the two opioids that the top experts suggest most, they seldom suggest morphine.
At 5mg, why on earth not? It is a tiny dose - and it lasts a full 24 to 28 hours.
Thank you for this encouragement, I'm going to Mayo clinic RLS center in April to switch, I hope, from morphine to methadone.
Methadone has been a life-changer for me - or perhaps I should say life-giver, as I did not have a life when on pramipexole.
I wish you well.
Parminter, did you take 15 mg of methadone to get off of pramipexole, and then reduce to 5 mg? And when do you take the methadone now, in the evening? I suggested this to my Doctor, and she said she wouldn't give methadone to a patient due to the awful side effects/bad feelings it produces....(which also leads me to think she really doesn't understand RLS too well....and she's a neurologist) I see her again in April.....I've had RLS for years and have been on the gamut of meds and have augmentation.....thanks
Oleford,
I took 10mg at 3.00pm on the first day, not in order to come off pramipexole, but because I had an horrendous daytime RLS attack, at three in the afternoon of a busy day, while moving around. I took it to overcome the ghastly feelings and the horror and terror of an unlivable life.
I was afraid to go to bed, so I took another 5mg at about 7.00pm, and I stayed up until I fell over at two in the morning. I took no pramipexole and no benzodiazepines, as I was accustomed to.
I awoke eight hours later. This was the first time I had had a night's sleep in many years.
The following day, amazed at the unexpected results, I took 10mg methadone at about 6.00pm - same result, no prami, no benzos, no symptoms, good sleep.
And so it went.
(I had methadone available for night-time breakthroughs, which were more and more regular, but I had not thought of taking it prophylactically - I wish I had).
I was winging it, but in a pretty well-read way.
I saw my doctor two weeks later, when I was taking 8mg. I deliberately waited until I was sure, as it seemed just too good to be true.
Over the next four weeks I had a few odd uncomfortable symptoms, I imagine they were a combination of methadone side-effects and pramipexole withdrawal, but nothing to write home about.
The higher starter-dose is needed because, without knowing it, you are withdrawing from a very powerful drug - a drug which doctors pop out like candy or baby aspirin. I wish they would wake up, so many of us have been harmed.
I just titrated slowly down to see what-was-what, on my own, as I knew there was no-one this side of Stanford University who knew anything at all.
I got down to 2.5mg, but that lasted only one night. Now I am steady on 4 or 5mg.
I cannot imagine what your doctor means by 'awful side effects/bad feelings'. There weren't any.
I know, from all my readings, that I am a prime candidate for DAWS, and I had never thought that it could possibly be so easy to withdraw from DAs. (The times I had attempted to reduce my dose by 25% were catastrophically miserable).
But, (quite accidentally), it was easy, ridiculously easy. I wasn't even trying to do it!
I take methadone syrup, the sort that heroin addicts use, (2mg methadone per 1ml syrup), and I take it prophylactically at about 6.00pm. The syrup allows me to titrate down very slowly, and to dose very accurately, using a pipette. I invented this method for myself.
Titrating down was easy. There is absolutely no desire to increase the dose, because there is no euphoria. You don't get high, nothing, nada, zilch - just sweet peace and calm limbs for 24 hours.
In my opinion, an opinion which I have worked hard to deserve, dopamine agonists over a long period of time are much more dangerous than a very low dose of methadone in informed, adult hands.
I do not think methadone is harmless, no drugs are, but for those of us with severe RLS some sort of drug is essential, and the opioids have been the go-to drug for centuries.
But guess what! There is no money in methadone for the drug companies - does that not make you think?
Why not write to Doctor Buchfuhrer at rlshelp.org in advance of your neurologist appointment?
Thank you very much for your message. I was on 2 mg of pramipexole for at least 10 years. About 6 months ago I got myself down to 1 mg, supplemented with tramadol and gabapentin, and get an average of 2 - 5 hours of sleep per night. I will take your info with me and see what I can do.
Yes, it's amazing that some Doctors feel fine about giving out meds that don't work and Lord knows what they've done to our bodies....
Thank you again....There is light at the end of the tunnel.
I know how life is - or rather is not - on a few hours of broken sleep every night for decades. Living with despair everyday tears you apart, body and soul.
I have absolutely no doubt our brains are harmed.
Your dose was criminally high - the new max suggested by the best experts is 0.25mg.
Stay in touch.
I live in Ontario Canada and here the rules are you must be declared an addict before you are given the opportunity to have the methadone treatment. The docs don"t see meth as a treatment for something other than addiction. How do you get someone to prescribe the medication where you live? A daily trip to the meth adone clinic for 6 months to me is better than staring at the walls every night , all night thinking about how I am losing my business, my marriage and my sanity?
Oh Merster, I am so sorry, I see you are suffering in all sorts of ways. Unforgivable ways, it should not be allowed to happen, it is not necessary.
I empathize deeply.
I came across the idea of methadone in the RLS Foundation Chat Room where a man was relating his experience of walking across some great American city, alone in the middle of the night, trying to locate a clinic that would help him, to no avail. I was appalled by the obvious and hopeless misery, but I was still a few years away from my own nadir at the time. (I have since thought often of that man, and wondered if he is still alive - somehow I doubt it).
When the time came that I needed methadone, (or lose everything, like you), and asked my doctor, he was filled with consternation and resistance and he said, firmly, that it was not in the formulary for RLS. I insisted that it was, and I requested that he investigate the matter on his desk computer. He did, and he scrolled through the information insisting that it was not there. I insisted he keep going. He found it right at the end of a long, long list, and agreed to give me a little to try, still full of misgivings. I had only wanted it for breakthroughs, but it was to become my sole medication within a year, purely by accident.
It was not easy to obtain, but after many calls to various pharmacists I found one that would supply me - after they had done two hours of due diligence. I assume they phoned my GP, who is a well-respected man, to check on me. It was rather funny really, an ancient person under suspicion of illegal activity, I quite enjoyed it. I shall wear a black hat and shades.
When I switched from methadone as a backup in the increasing crises, and moved to using it prophylactically, my life changed overnight.
There is absolutely no temptation to increase the dose, and every possibility of reducing it as the dopamine agonists and too-many-benzodiazepines leave the body and as iron stores are repleted. (My GP also gave me IV iron infusions, in his rooms, no fuss or bother or expensive specialists). I keep a very close record of my consumption, less for myself than for my doctor and the pharmacist.
I furnished my doctor with all possible scientific information, and spent many of those sleepless nights trawling for evidence-based medicine, printing it out and filing it neatly in a ring-file.
I am thrilled, and my doctor is thrilled, and he gives me messages from other patients who have benefited from my cussedness and refusal to give up.
I assume you have the recent paper on low-dose opioids for RLS? You can print it out as a PDF -
mayoclinicproceedings.org/a...
No doctor can fault this, the authors are among the most highly respected in the world.
Also, if you google 'low-dose methadone for pain in older patients' you will find several recent papers that give the lie to your own doctor, who ought to read more.
Are you a member of the RLS Foundation? If not, do join, it is well worth it. Doctor John Winkelman of Massachusetts General (and Harvard) has just given a seminar on opioids which is available to members.
Take that distress and turn it into action. I did, and it worked.
Parminter, I so appreciate your ,concern and support. You seem like a very smart caring person, as do I think of myself. That is why I don't give in to this disease but like you I decided finding the answers I need will get me my life back. I have everything and you replying and giving me your story makes me fe I might only be a certain number of desparate nights rather than of lifetime of misery. I hope you don-t mind my doctor reading your story. I wish you all the best and will post my successes when they happen
Merster, PS, if you are on dopamine agonists, and they are no longer working, you ARE an addict.
psychcentral.com/news/2010/...
areterecovery.com/blog/ropi...
ncbi.nlm.nih.gov/pubmed/236...
The latter is by Doctor NIrenberg, who is the expert on this and who was the first to raise the red flag of warning - which no-one bothered to notice. That is criminal negligence.
I believe you are right about an addiction to ropinerole and that should be enough. Unfortunately the docs don't see it that way. It has to be classic addiction. Unfortunately that isn't my case. Trust me I am going to raise hell . Some times we a just called on to make stuff happen
Wish me luck
Hi Merster, I have suffered with RLS for 30 years. I take pramipexole and oxycodone and am now sleeping through the night without any disturbance. As is mentioned in another reply, you are far more likely to get this from your GP.
Wishing you well and let us know how you get on. 👱♀️😴
Hi, Merster, I agree with others here. Morphine is seldom prescribed for RLS. Methadone is the opioid favored by most RLS experts, for several reasons:
- lowest risk of addiction of all the opioids
- long lasting (about 24 hours)
- mildest side effects, including much less of a "high"
- it hits some nerve receptors in the spinal column that are implicated in RLS, but are not hit by other opioids
I take primarily methadone to treat my serious refractory case of RLS (along with gabapentin). I finally got blessedly free of all DAs (pramipexole, requip, Neupro patch) with the help of methadone. I am currently almost completely free of all RLS symptoms, and sleep 8 hours a night. I don't want to push methadone; only you and your doctor can know if it is appropriate for you. Here is a link to the current gold-standard journal article on "appropriate use of opioids for the treatment of Restless Legs Syndrome ". You may find it helpful, and if you do, you can print it out and bring it in to your doctor to help guide the discussion. Good luck!
I have been on Methadone 5 mg for a year now. No issues at all and nothing but great sleep. Look up standard dosing for other uses. 5mg of Methadone will cause 0 addiction issues.
Its a life-saver!
Yes I used methadone for 4 years and it worked great slept great never once had the jumpy legs
I'm really interested to read everyone's response regarding methadone. I've been a substance misuse worker for many many years, specialising in opiates and opioids. I agree 5mg methadone is a low dose, but daily use will cause addiction and consequent withdrawal if stopped. Because methadone stays in the body for a long time, even several months after finishing detoxing, withdrawal symptoms can sometimes re-emerge out of the blue months later.
My understanding from reading the postings here is that people that are prescribed it are finding it a life-saver because they are able to sleep and not be plagued with RLS symptoms during the day as well as at night. This is because methadone is a depressant, which means it slows down the central nervous system, including lowering the heart rate and relaxing muscles.
Personally I would be very wary before embarking on using it and would encourage anyone considering taking it to look into the potential side effects and possible adverse impact it might have for them in the long term.
Thank you very kindly for your concern and warning.
But - there is always a but - it is “a choice between two evils” as the saying goes in NL. Are you aware of the effects of untreated severe RLS? Of you do a bit more reading on this site you may glean some of them. They are horrendous, and not only ‘potential’ or ‘possible’ and ‘in the long term’ but immediate and in the short term. Apart from the high risk of very serious effects in the long term.
In addition, I suspect that many of us, people with RLS, take their medicines simply because they want to quell the torture of RLS symptoms and associated restlessness and sleeplessness, and not because they ‘crave’ the medicine. To illustrate, I sometimes forget to take my meds (ocycodon) and only fet reminded when the RLS starts. When I stopped the oxycodon for a month - to try to reset my sensitivity to it - I didn’t spend a minute thinking about the oxy, even though my temporary meds didn’t work as well.
So, again, thanks for the fair concern and the warning, really appreciated, but be aware that is represents a one-sided view, experience and opinion only. And RLS is a multifaceted monster.
painnewsnetwork.org/stories...
Hi Diane,
I read your post with interest and agree that opioids should be used with caution, particularly if there is a history of abuse.
However, they are last line essential treatment for severe RLS and are literally life saving for many RLS sufferers.
We will definitely be dependent on them ( but every RLS sufferer is dependant on their meds ( dopamine agonists/alpha2delta ligands/ benzodiazepines/ opioids) but we are not addicted to them, even after long term use. Yes, we will have withdrawal if we need to take a drug holiday or switch to different meds but, sadly, we will be on these meds for life.
The link I have posted above is the latest FDA statement distinguishing dependence and addiction.
These discussions are right on the money and every person who is unfamiliar with RLS needs to read those words you all have so accurately expounded...including my family doctor. I seriously believe I know more about Rls than he does and that is a sad statement. So who are the "speialists" and how do I access them in a situation where the room gets quiet when you mention RLS? I I had cancer or some disease that would insure my likely death I am sure doctors would be scattering to help me. How many Rls sufferers commit suicide And we don't hear about it? There is no immediacy in understanding and finding answers that would help untold numbers of folks quietly suffering After the rest of the world has gone to sleep. My rec room in front of the fire and the TV has become my nightly prison and the thoughts of all the things I have to do all take a back seat to my nightly hell. I had a brother who committed suicide after breaking his neck in a diving accident. All these years with no explanation leads me to believe he had RLs. After all my mother has it too. Maybe me getting it is part of my maybe understanding why he did what he did. Try dealing with Rls with a halo attached to your upper body and ask yourself how long you could deal with both those scenarios? I remain hopeful as always but Now I must phone my Doc on a Sunday morning and interrupt his day and insist he do the job I expect he should do. So here goes. Let you all know
I’m so sorry to hear about your brother.
I’m also sorry to hear you are suffering every night.
I suspect the requip is the reason.
Please read about Augmentation on this site and if it sounds familiar- consider getting off if slowly.
The morphine you are also taking should reduce withdrawal symptoms.
Once off requip, your RLS may settle with the help of the morphine.
Are you in the USA? Methadone is not available for RLS here in the UK.
I am in Canada where cannabis is leagal. Tried it and it helps a bit..gonna keep at it.
Hi again,
Thanks for both of your speedy replies.
Yes, I am horribly aware of the effects of untreated, or incorrectly treated, severe RLS, and the multi-facetted monster it is. After many years of not being able to sit still for longer than 10 minutes at a time due to uncontrollable leg and arm jerking, getting up for 30 to 40 minutes 5 or 6 times a night and being constantly exhausted as a result, I am extremely conscious of the immense relief the correct medication can bring, and the despair that can come without it. I agree many of us take our medication purely to quell the torture of RLS.
I certainly didn't mean to disrespect anyone or give the impression that I thought anybody was taking methadone lightly, because I know from my personal experience how RLS can dominate your life, and what a life-saver the correct medication is! Thank you for your link Joolsg.
I guess the bottom line for me is that this is a site for everyone to share their experience and support each other the best we can, as we're all battling RLS, and I'm so glad of this forum. I don't think I've ever posted anything before but thought it may be helpful to share my caution of commencing methadone, and the reasons for that caution since people's opinions were invited, but perhaps I was rather heavy handed! My apologies if I was. None of us choose to suffer RLS, and we need to go with whatever we feel provides the best option for us personally.
Hi Diana, thanks for elucidating us further, especially about your personal experience with RLS. Your earlier post seemed to come from an outsider. Sorry to have misjudged you that way.
I fully agree with you that the medicines can be as monstrous as the RLS itself, of which the DA’s are a first and foremost example. I get the impression that there is far more experience with and surely more ‘stage’ for the negative aspects of opioids, although from what I have learned on this forum and elsewhere is that similar warnings, precaution and ‘stageing’ should be given to DA’s and probably also alpha2delta ligands. Time will tell.
Hi Diane,
Thanks for the further info about your journey.
I think we are all aiming for the same result- relief from RLS.
I think opioids are regarded as the elephant in the room. We have all heard such scare stories about them and are terrified of using them. I know I was until I researched their use for RLS. Long term use at low doses has worked extremely well for many.
I agree with Lotte that dopamine agonists are the drugs we should be concerned about. Augmentation and withdrawal from Dopamine agonists are horrendous and have definitely caused suicides in Europe.
I just don’t want people to think opioids always lead to addiction.It might prevent people asking for them- and they are a very helpful and useful drug for RLS.
Good to hear back from you, and glad to feel we're on the same page after my bumpy start! x
Yes, time will tell...
Hi, not too long ago I posted my journey with RLS and what a lifesaver methadone was for me. I took it for 13 years with no need for increase and no side effects. I’ve since lost the doctor who was prescribing it and had to start at square one. Because of this I went five nights/days with no sleep whatsoever because I could not lie down, sit down or even stand still because my RLS is so bad. My primary care physician gave me Mirapex but for some reason it gave me really bad diarrhea and stomach pain. It was insinuated this was withdrawal from the methadone but it stopped once I stopped the Mirapex and then I tried it, the Mirapex again, same exact thing happened. Then I couldn’t get in to see my primary care physician for something else and no one else in the practice wanted to step on toes so they wouldn’t do anything. I ended up going to urgent care once and the emergency room twice because I couldn’t take anymore and I sincerely wanted to kill myself. I may have saved my time and money. Their conclusion was I was an addict and suicidal for some reason even though I told them several times about the severity of my restless legs. They were discharging me at urgent care with nothing but an extremely dangerous sleeping pill and I asked the nurse what I was supposed to do and I kid you not she said “go home and suffer”! Wow, so that’s how we treat people now. I’m an RN and I would never have told someone anything like that. Nurses are supposed to be the patient’s advocate. The ER was just as big a mistake. The care manager wanted me to commit myself to a psychiatric hospital and told my husband if I wouldn’t go he could involuntarily commit me! I understood they couldn’t prescribe me methadone but they could have given me something. By this time I was actually hallucinating because I hadn’t slept for five days, my blood pressure was sky high and once home my husband said I started talking nonsense. Awesome. They thought my blood pressure was high because of withdrawal from the methadone, which it was not because I never had withdrawal symptoms even at the beginning. My blood pressure was high because my body was trying to work to keep me going. Lack of sleep is going to play hell on your body. That night I couldn’t take it anymore and took the Mirapex again. It still gave me diarrhea bad and stomach pain but at least I finally slept and could sit. I was so close though to wanting it all to just stop and ending my life. Right now unfortunately I’m on Requip XL 4 mg (max dose) and regular Requip 3 mg (almost max dose) and just completed a sleep study showing mild sleep apnea but because my new neurologist/sleep specialist is not afraid to prescribe opioids and is going to put me back on methadone and because it’s a respiratory depressant she wants me to use the cpap. The unfortunate part is since being on the Requip I’ve gained back 15 of the over 30 pounds I’d lost. I probably wouldn’t have shown any sleep apnea before that happened. Now I’ve got to go next weekend and do a cpap titration study and will have to use it until I can lose the weight again. I hate the Requip and I’m already augmenting on it. I’m not looking forward to coming off but hopefully she knows what she’s doing and the methadone will help with coming off. My faith in the medical field here in Michigan anyway leaves me very disappointed and frustrated. First they hand out opioids like they are fricken candy and now they will not prescribe them and if you mention taking one they act like you are an addict. I’m no more addicted to methadone then I am to my blood pressure medication. I said this to my doctor and she had no answer. If you stop any medication that is treating a disease or disorder and stop it the symptoms will come back! Does that make us addicted to everything? I don’t think so but I do know how dangerous DAs are and doctors seem to think they are the holy grail of medications for RLS. I have refractory RLS and it’s been proven that opioids are the only thing that helps and methadone is so awesome because I take it about 6:00 and it lasts all night and until I take my next dose. I’m so looking forward to going back on it so I can get back to my life. Right now on the Requip I don’t dare drive because it can make you fall asleep suddenly even if you’re driving. Since this happened to me not once but twice the last time I’m terrified to drive because this stuff is extended release and in my blood 24 hours a day. My new doctor wants to wait until my appointment in June to start to taper off the Requip and start methadone. That is too far away!!!! I’m going to message her in the patient portal and see if once I’ve been on the cpap for a couple weeks we can do it then. I’m almost positive the Requip isn’t going to keep working that long. I’m already having breakthrough restless legs and sometimes they start way early in the day. Yike! Sorry for the long post but just wanted to chime in on the benefits of methadone and how even over 13 years I was on the same dose. I miss it terribly and almost lost my life because no one would prescribe it.
Sus
I'm quite addicted to breathing too and would suffer terrible withdrawals if my air supply was cut off! 
Yes! I hear ya! Wait until they make oxygen a danger to have and take it away (said tongue in cheek 😜) from us.
Sus
Wow- you have certainly been to hell and back. It is so infuriating that doctors still have no idea how to treat RLS.
If you read my reply to Diane above, you will see I have added the link about opiods at low dose and the difference between dependence/addiction issued by the FDA in the USA.
Your doctors have taken away a safe drug that was working for you and have now given you way over the maximum recommended dose of requip- and that is a horrible drug with far more side effects than opioids and a more difficult withdrawal.
Thanks for sharing your story- I hope you manage to lose the extra weight and get safely back on the drug that helped you so well.
Thank you. I’m a little bit scared about coming off both Requip XL and regular Requip to tell you the truth. I’m again hopeful she knows what she is doing and/or is open to feedback. I know she’s going to prescribe methadone but in her notes from our first meeting she talks about 5 mg and I know that will not be enough while I’m coming off the Requip.
I actually read that article that talks about the difference between addiction and dependence. I should provide a link to my primary care physician. After my last visit to the ER and telling them I wanted to take my life, I had to go see my primary care physician. One of the first things she said to me is that I was too focused on methadone. That’s when I asked her what would happen if I stopped taking my antidepressant or blood pressure medication. She said she had no answer for that. I did end up sending her the link to the Mayo proceedings. I also in a message told her how horrible it felt to be called an addict and be told I should be committed. I got no reply. I still would like an apology at least from her. I’m not holding my breath though. I told her I had refractory RLS so a little research would have told her why I was so focused on methadone not to mention being on it for 13 years with no doseage increase. She told me no one in the whole of the practice she belongs too, which encompasses many specialties, will prescribe narcotics and especially not methadone. The suicide rate of people with chronic pain and people like me with refractory RLS is on the increase but this is getting buried by what’s going on with the opioid crisis. You know what one of the treatments for pain is now? Distraction. You’re supposed to be able to distract yourself from the pain! Are you fricken kidding me!?!?! Bet that works real well for a broken leg or major surgery. Or for people like me who have severe refractory RLS. I can tell you right here and now it doesn’t. I wonder if I was supposed to distract myself from the hallucinations too?
I am so grateful to have found my new sleep specialist who didn’t even flinch at the use of methadone and I didn’t have to even ask. She even apologized that I had been treated so poorly! It’s a pain to have to travel two hours to see her and do the sleep studies but oh so worth it to not have to feel desperate for help. She gets it. Now I have to figure out how to get her to get me off the Requip asap after my cpap titration study and back to the safe dose of methadone.
You know what really frustrates and scares me is that doctors know that DAs like Mirapex and Requip can cause you to possibly fall asleep instantly without warning and possibly while you’re driving and think that is safer than a low dose opioid?! I had two accidents on these drugs with the last occurring less than a mile from our house. I was awake and alert and didn’t feel the slightest bit tired or groggy. The last thing I remember is leaving the stop sign at our corner and waking up with my airbag blown, glass all over and scared as hell. I completely totaled our Jeep. We went to where they hauled it to see if we could get some of our stuff out of it and the roof was smashed in and it was a miracle I wasn’t killed and I’m not being melodramatic. This accident and another before it that I could not figure out how it happened should never have happened. Neither my doctor nor the pharmacist told me the medication had a black box warning for the possibility it could cause you to suddenly fall asleep! Don’t you think that would be important to know if you have to drive? I could have killed someone or myself and they didn’t feel that was important?!? My god doctors can be such fools. So this is the safe go to first class of drugs to treat RLS? Not to mention the dangers of coming off of it. Do you know when my doctor took me off Requip he just did it cold turkey? Keep in mind this was 13 years ago and I’m not sure they knew about DAWS. I had two days of pure and complete hell before he started the methadone that saved my life. Literally. I had gone through every drug used for RLS and was so depressed and was giving up all hope that anything could be done. I don’t care what people say about the dangers of opioids, which is nonsense for the extremely low dose they use for RLS versus pain management, I’ll take it over the dangers of DAs any day. Methadone didn’t almost kill me but DAs did. So before chastising someone for taking opioids for RLS, first do some research, especially about refractory RLS, and then try putting yourself in their shoes. Don’t bury your head in the sand about how safe you think DAs are and other medications for RLS. All medications are dangerous in their own way but some are worse than others even if doctors want to fool themselves and you how safe they are. Sorry again for such a long post but this is an especially touchy and to me important subject and message to get across.
Sus
I hear you sister!!!
We have all been in that same dark place so totally understand why you have written about it.
It’s cathartic- no one without RLS understands how torturous it is. It’s not just the sleep torture but those horrible creepy crawlies that leave you feeling so tightly wound up.
Hope you’re on anti depressants that work well with RLS like Trazodone or Wellbutrin ( most others can worsen it).
Stay strong- with the help of your new doctor you should be able to get the right dose of meds to help you off the requip. Just go very, very slowly.
Let us know how it goes and hire a lawyer about the requip side effects- lots of legal action in the USA over impulse control issues and over prescription.
Inept and unsympathetic doctors are dangerous. For me RLS is a torture and I will do whatever it takes for some relief. I don't worry about addiction issues just as long as the RLS stops. That may seem a reckless attitude, but as long as the torture is kept at bay I am so relieved that I can't bring myself to worry. Hope things work out for you and you get your methadone sorted out because it works so well and so immediately as you know from long experience. Good luck!
DJTP1962,
RLS is very much a torture for me too. I’m definitely not worried about addiction on such a low dose for one thing but I don’t just want to be treated with methadone (or good substitute opioid) I NEED it. I’m barely managing right now on the Requip XL and regular Requip both at max doses almost from the start because the low doses didn’t even touch my restless legs. I’m unfortunately waiting to do a CPAP titration study next Friday night, which if I hadn’t been put on Requip and gained back about 15-20 pounds I wouldn’t need because even with the weight I only have mild sleep apnea, and then possibly waiting until May 23rd when my appointment is to get back on methadone. The one thing that troubles me (well not the only thing 🤪) is that in her notes from my first visit she talks about starting methadone at 5 mg and I had been maintained on 10 mg plus I’ll be coming off all that Requip you’d think I would need a higher dose and then taper down back to the 10 mg. I don’t know if she is assuming the CPAP will help correct my restless legs or what? I’m very angry actually to have to be treated for apnea in the first place! Never would have been here if allowed to stay on the methadone. I even had a one time consultation with the doctor who originally diagnosed me with RLS and he suggested to my primary care physician that methadone was a perfectly safe option but of course with the opioid crisis no one wants to touch any opioids with a ten foot pole and methadone is really bad to any doctor right now. All of this comes from national legislation and legislation for our state itself. I like how lawmakers get to decide what we can and can’t have and why the h*ll aren’t doctors in there pitching for us? Worse though is that all doctors are just blindly taking up the mantra that all opioids are bad for everyone and every condition. The suicide rate for people with chronic pain conditions is going up but let’s not worry about that. Same for us RLS sufferers. It’s awful enough suffering from this horrible disease but then to be treated like an addict and then told maybe I should voluntarily commit myself?!?! Being told this after 5 nights, and really days because I couldn’t sleep then either, and also hallucinating and having my blood pressure go from very well controlled to sky high was the worst medical experience I’ve ever had. My faith in the medical community will never be the same and it will take me a long time to forget how I was treated. I mean the first time I went to urgent care and they were discharging me with no real help I asked the nurse what I was supposed to do and she said “go home and suffer” I kid you not. Who doesn’t start to feel hopeless and suicidal after that. I’m not sure if I shared with everyone what happened with the clinic that used to treat my RLS but my doctor reached out to them for help and a doctor that has never even treated me there told my doctor that it has been talked about throughout my doctor’s notes that this might be a somatic disorder, as in all in my head!!!!! First I ever heard that. She out and out lied to my doctor. The first doctor I saw at that clinic was a very no nonsense, straight talking to the point of bluntness even if it might hurt your feelings, kind of guy and he NEVER once even hinted at something like that. Nor did anyone else I saw with the last person I saw there telling me that yes I did have refractory RLS. I’m still angry and flabbergasted that she would do that and why. I’ve had restless legs since I was a kid even though I never told anyone because restless legs wasn’t really out there and definitely not in kids. It took until 2005, I started having really bad problems about 1998, to get diagnosed and finally properly treatment for my legs. And if all that time it had been a somatic disorder no treatment, including the methadone, would have worked because that’s the nature of somatic disorders. I was misunderstood and mistreated for my restless legs up until 2005 and barely scraped by then and now I get to do it all over again. I do thankfully have a doctor who will prescribe methadone (thanks to a wonderful person on this forum who I shall be forever grateful to) as soon as I’m on CPAP. I hate the wait though and I’m already having breakthrough restless legs and it sometimes starts very early both clear signs of augmentation, which my doctor does realize and is trying to push things forward faster. Oops, sorry I got so long winded 😬. I just want to get off this Requip and back to what worked for over 13 years without dose adjustments or bad side effects. Then I’ll need to go back through all the hard work of losing 15-20 pounds again plus what I still need to lose to reach my goal. When I think back to when I first started having restless legs I’ve had this condition for 40 years and I’m 47.
Sus
I think my grandmother, who I shared a bed with as a small child, had firsthand experience of RLS of some sort. When I'd start wriggling and kicking, she'd get me to wriggle my toes and to keep going until they were really tired then slowly move my way up my body until I reached my fingertips. I guess it was a form of what is now called mindfulness and I still do it. Sometimes it even helps! I was late for school practically every day because I couldn't wake up. It would take me forever to fall asleep and I'd spend hours just staring out my bedroom window. I can't remember when I first heard the term restless legs, but I knew immediately that's what I had. I call it a bad energy. I might be getting myself in trouble, but after over 50 years of suffering in silence, I don't care, I buy my methadone on the black market. I've had so much experience of doctors just dismissing me that I've been forced to turn to dealing with the criminal fraternity in order to get the medication I need. The operative word there is NEED. I live in fear of the day my source dries up. I dread that day and it's attendant withdrawals. Some people would just dismiss me as an addict, but my quality of sleep is such that I can't care. It's not like I'm getting stoned on it, but I'm not judgemental about people who choose to be! Enjoyed your "long winded" post. It's so refreshing to just be able to be honest and to have people to communicate with who understand the debilitating nature of this curse. I couldn't believe it when I found this site! I try to love my RLS as a part of me, but to hell with that! I hate it! Peace out X
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