Opioids Opioids for restless legs?

[opiatones]

Ok, so here is the scoop. My have had rls for years, I ended up getting hooked on opiates which killed my rls, completely. Then I decided to stop, and all hell broke loose. The rls was worse then ever imagined. Here is a list of all the meds I have used over the years for my rls.
Amitriptalyne - no relief.
Gabapentin (currently using) - some relief in doses of 1500mg+ more relief when used with Tylenol 1s with codeine.
Mirapex - temporary relief but after 1-2 weeks symptoms came back full force.
Clonidine - little to no relief.
Potassium - no noticeable relief.
Clonazepam/Xanax- no relief but knocked me out.
Hylands restless legs - minimal relief.

My question is... does anyone have any experience of doctors prescribing weak opiates such as codeine phosphate, hydro condone, dihydrocodone, tramadol etc. for rls. The Internet claims this is a last line of treatment but an occasionally used one but I have found no experiences.

P.s. --- not sure if I posted in right part of the forum.

 

[opiatones]

Any uncommon info on rls or opioids/opiates to treat rls would be great. Just wondering for my own sake. I take Tylenol 1s with gabapentin fairly regular without any repercussions on sobriety. Despite it being seen as a cheat. i used oxycodone 240mg+ a day and heroin in the past. But my rls was from before.

 

[bennyZA]

First, you DO NOT need to say things like "My spider..." or "SWIM has..." It makes things so difficult to follow and understand and there really is no point in doing it.

Anyways, I would be shocked to hear a doc prescribe a daily opiate regime for RLS. Also, RLS is one of the main symptoms of opiate withdrawal. In fact, it is usually the worst in many people's eyes. So anyone would have extreme RLS by stopping opiates. I think that fact alone would make using opiates to treat RLS counter-productive. I see you've tried a lot of medicine, but have you tried non-medical treatment, ie meditation, herbs, etc.

Also, have you seen a doctor specifically for RLS, or are those meds just ones of you've gotten your hands on. Remember, NO ONE HERE IS A DOCTOR. No one can give you medical advice.

Also, are you sure this is totally about RLS, or do you think you might be trying to find a constant source of opiates? It might even be subconscious. Considering how much oxy you use, I find it hard to believe that you have no intentions to use this as an opportunity to score opiates legally. I was (am) an opiate addict. I know how it works. We are not here to judge so you can be totally honest. I would say that you should work closely with a doctor on this. Also, be totally honest with him. Lying to try and get opiates will just make things worse.

 

[opiatones]

Although I do like the thought of constant opiate supply I have stopped and have had an opportunity when I had my head injury to receive them and did not take it for my sobriety. I was facing rls long before I began taking opiates, it all began after I was prescribed seroquel and it caused rls but the rls never went away log after I stopped taking the seroquel. I have been treated for rls for a long time. The only meds on the list not taken form bein prescribed was Xanax, potassium and hylands.
Sorry for the post issues.
I am only asking about people experiences, I never asked anyone to fix me. Just give me their experiences. You obviously only took some bits as pieces from my post.

 

[missmeyet?]

Welcome to BL. Just to let you know hon, it is against the rules here to use terms such as SWIM or referring to some other thing other than yourself. It makes posts difficult to read and understand and will not prevent you from incriminating yourself in any way. That being said, is your exact question "will a doc prescribe opiates for RLS?" I would say that would be difficult to predict. I doubt it. With all the new regulations and the even harder stance the DEA is taking regarding scheduled narcotics most docs are going to have to have a lot to back up why they are prescribibg it. If it is not a normal standard of practice they may be afraid to. You might get lucky and find one who would but probably not. I know that is not the answer you hoped to hear.

How long have you been off the opiates? I know it must be miserable because to me that is the worst symptom of WD. I do know that treatment of RLS can be with opiates/opioids according to the literature but in my 20 years of nursing I have never seen anyone actually prescribed them for RLS. I'm sure it does happen if you happen upon a liberal doc.

Good luck..I know it sucks..I couldn't imagine going through that for years. I went off opiates (chronic pain patient) with my pregnancy and I had RLS the entire time I was pregnant. Made my whole 9 months some of the most miserable in my life.

 

[opiatones]

I absolutely refuse to tell a doctor about my past addiction due to having lost 2 family doctors to honesty! Doctors these days are fearful of treating addicts. Especially opiate addicts, for obvious reasons. It hurt to have doctors refuse to treat me due to my honesty with them. The first one treated me for 3 years prior to me telling him.

 

[missmeyet?]

First, you DO NOT need to say things like "My spider..." or "SWIM has..." It makes things so difficult to follow and understand and there really is no point in doing it.

Anyways, I would be shocked to hear a doc prescribe a daily opiate regime for RLS. Also, RLS is one of the main symptoms of opiate withdrawal. In fact, it is usually the worst in many people's eyes. So anyone would have extreme RLS by stopping opiates. I think that fact alone would make using opiates to treat RLS counter-productive. I see you've tried a lot of medicine, but have you tried non-medical treatment, ie meditation, herbs, etc.

Also, have you seen a doctor specifically for RLS, or are those meds just ones of you've gotten your hands on. Remember, NO ONE HERE IS A DOCTOR. No one can give you medical advice.

Also, are you sure this is totally about RLS, or do you think you might be trying to find a constant source of opiates? It might even be subconscious. Considering how much oxy you use, I find it hard to believe that you have no intentions to use this as an opportunity to score opiates legally. I was (am) an opiate addict. I know how it works. We are not here to judge so you can be totally honest. I would say that you should work closely with a doctor on this. Also, be totally honest with him. Lying to try and get opiates will just make things worse.

That was a little bit of a harsh welcome for a newcomer to BL...

And though we should not substitute for medical advice from a doctor we are here to help by relating personal experience and knowledge.

And for the record, opiates ARE a legitimate treatment for RLS in medical literature.

 

[opiatones]

That was a little bit of a harsh welcome for a newcomer to BL...

And though we should not substitute for medical advice from a doctor we are here to help by relating personal experience and knowledge.

And for the record, opiates ARE a legitimate treatment for RLS in medical literature.

Thank you for saying that. So it is not just me that thought was spoken in an unnecessary tone. Anyways I apologize for my post. I just wanted some answers. Anyways, rls during pregnancy? Wow, not like you had enough going on eh?! Well, I for one have gotten to the point of suicide due to my rls, I just want to be able to sit back and relax after work like I was able to when I was using. I've been sober for about 2 years with a 3 month stint using closer to the beginning of my sobriety. I know it is deeper then my past addiction.

 

[Anon610]

Ambien helps me with RLS. Perfect sleep aid too.

 

[opiatones]

Is ambien like the zoplicone family drugs?

 

[Mr.Scagnattie]

I wouldn't think opiates for rls would be a good idea at all. So, great you don't have anymore RLS.. but now you're physically addicted to opiates and will get rls anyway when you inevitably face withdrawal.

 

[opiatones]

Well, opiates are a bad idea for treatment, subconsciously I knew this.
So now the new question is. Does anybody have non opiate related rls, and cured the symptoms, if so how? There are a few meds that can knock me out including benzos and z-drugs. But I don't want to be knocked out. I want to be able to sit on the couch, go for a log drive, sit on a plane, sit through a movie. You know? Do normal things.

 

[missmeyet?]

I wouldn't think opiates for rls would be a good idea at all. So, great you don't have anymore RLS.. but now you're physically addicted to opiates and will get rls anyway when you inevitably face withdrawal.

This is true Mr.Scagnattie and I agree...this is probably why they rarely use it and usually only in extreme cases when all other avenues have been exhausted.

But I could not imagine having RLS permanently on a daily basis. I can believe the suicide issue...when I was pregnant (the RLS started when I came off all opiates for pain mgmnt because of the pregnancy and then continued throughout. Pregnancy sometimes will cause some women to have RLS so I guess it was a combination of factors) it was sheer torture. I said 9 months but it was actually about 7 months. 7 months that I rarely slept for more than 30 or 45 mins at a time. Plus the normal discomforts of pregnancy, the untreated chronic pain and I was a little past average maternal age. Due to these things I became more depressed than I have ever been in my life and everyday was absolute misery.

Opiatones, I have no other suggestions for you as there was no approved treatment for me while pregnant. I rarely have the problem to that extent now unless I happen to be experiencing WDs. I do have a milder case of it every once in awhile if I am having a lot of pain in my legs and lower back.

I would definitely see a doc and tell them the severity of how it is affecting you and bring your records showing all the other treatments you have tried in the past.

Good luck.

 

[bennyZA]

My bad. I didn't mean to sound like an asshole. I was in a foul mood. Welcome to BL!

 

[tricomb]

Ambien helps me with RLS. Perfect sleep aid too.

I havent read any of the replies to this thread yet, but ONDANSETRON HCl*




(*I don't condone the uninformed abuse of any substances) so even though this medication works incredibly well off-label for RLS according to a bunch of literature I've read (sorry can't get links now, search for ondansetron + zofran + RLS in a trusty peer reviewed article database of your choice), I might add that it is (in my experience) very effective to help ease the commonly reported and experienced significant RLS that accompanies acute opioid withdrawal symptoms from heavy, and usually extended, serious opioid abuse.

I am not going to do all the research for you, because you can easily search for it's prescribing information or checkout it's pubmed pages.

However I will say this, there have been reports of it causing long-QT syndrome, a serious heart condition that can be fatal. Methadone for example, is another drug that causes long-QT, which probably why methadone is one of the most abused upon drugs / easiest to OD on. I've seen a girl drop dead off two ten tabs. So those of you with heart conditions, should be careful because although mostly opioids are very benign when it comes to damage to the body in comparison to other drugs such as the amphetamines, synthetic RCs, inhalants, tobacco, alcohol, benzodiazepines/barbiturates, street Cocaine & Heroin, PCP, etc.

The methadone-like fully synthetic opioids are the only commonly RX'd opioids when it comes to messing with the heart though compared to the *codones, *morphones, fentanyl & it's related compounds, codeine, morphine/heroin (same thing inevitably since heroin is inactive and is really a prodrug for morphine that crosses the BBB much faster due to thediacetylmorphine part of heroins real name).


There may be other side effects that could be problematic for some of you which is why you all should never take any compounds EVER without fully researching them until you feel completely confident that you (and those of us who know our shit around here who are always willing to help out people who act chill and patient, recognizing that this is an international forum and the most heavily trafficked one at that, so please just... be chill and patient, read and abide by the BLUA which you agreed to do and are bound by as stated upon creation of your account.

The links to the BLUA and the rules of this forum, the OD Guidelines can each be found in my signature in addition to numerous places all over the site, stickied to the top of the forum and easily found for those who truly want to stay a part of this community.

Oh, and yeah opioids for RLS is not a good idea, although I know that it is sometimes prescribed by doctors as a last line of treatment after all other RLS medications have failed, one of my old buds from here is on methadone for his severe debilitating Restless Leg Syndrome. I would severely warn you against taking any z-drug like ambien, since they are nothing but trouble in my pseudoprofessional opinion, especialy zolpidem. I wouldn't touch that (or methadone) with a ten foot pole. But please exhaust every other option, look into the Zofran/Ondansetron (the brand name Zofran shit is extremely expensive and the generics are just as good), its a selective serotonin HT-3 antagonist I believe.

What have you already tried for RLS? What else have you thought about besides opioids?

I wouldn't think opiates for rls would be a good idea at all. So, great you don't have anymore RLS.. but now you're physically addicted to opiates and will get rls anyway when you inevitably face withdrawal.

Amazing point, that's pretty much enough to make me /thread this, hahahaha. But it would be interesting to hear what people hear works well for RLS these days. However you should know that if you used the search engine you could have found this question asked and answered many times, in our database that spans almost 15 years of content. But medicine definitely changes a lot over the years, new drugs come out, drugs get reformulated, patents expire, generics become available, prices of course change but we don't discuss prices here on bluelight as clearly stated in the rules so I'll check back on this thread in a bit to see what people have found works for RLS besides opioids, which as Mr. S said perfectly, they essentially induce RLS anyways upon discontinuation so that would be idiotic as a first, second, third, or even fourth line of treatment. Exhaust all other options.

 

[crOOk]

Have you tried propanolol? I get horrible akathisia from my neuroleptics and small (!) amounts of pot also help to ease the discomfort quite a bit. Large amounts make it much worse though.

 

[opiatones]

I will check out ondanestron. My list of tried meds are at the top. I do not like z drugs despite the 5 hour solid sleep.

And I believe propanol is like mirapex if I am my mistaken.

 

[crOOk]

And I believe propanol is like mirapex if I am my mistaken.

No it's a beta blocker, a class which you haven't tried as of yet. Try speaking to your doctor about it. It's not a very conventional way to treat RLS, but there are cases where it helps. Since you've tried a lot of stuff, you and your doc might want to look into it before going for treatment with opioids.

That being said, I would not say opioids are THAT bad an idea once you've exhausted every other option. Just be aware that you might never get off them and that addiction might become an issue, depending on your susceptibility. There are many patients out there who have been on opioids for decades. Itching and gastrointestinal issues might become a major issue. If you are still in your twens I'd say it is a much less attractive option than if you are 60 or 70 years old. If you can find a substance that works at a certain dosage, can keep yourself from upping that dosage and can live with the side effects and the effects opioids have on your mind, it might be an option. Keep in mind that you need to find a doctor that won't try to kick you off them after a few months. Needless to say, opioids are relatively expensive and insurance will have to cover for it.

Best try ondansetron and a beta blocker first and check forums for rls patients for further treatment strategies.

I was facing rls long before I began taking opiates, it all began after I was prescribed seroquel and it caused rls but the rls never went away log after I stopped taking the seroquel. I have been treated for rls for a long time.

This IS RLS though and not akathisia, right? Both can be caused by quetiapine, though akathisia is much more common as far as I know. I'm on that stuff myself and the akathisia has actually been getting worse. Worst side effect I've ever experienced from any drug...

I have an article with 7 case reports of RLS being caused by quetiapine. Shoot me your eMail and I'll send it your way.



EDIT: I just read up on the current treatment standards and it seems a number of patients are actually receiving intrathecal opioids due to the better side effect profile of this ROA. Craziness... Good luck with whatever you try next, man!

 

[tricomb]

Clonidine's another frequently prescribed beta blocker that could work, look into it iono.

 

[rlsfmods]

Opioids absolutely can (are are) prescribed for RLS, newly renamed Willis;Ekbom Disease or WED. The WED Foundation has a lot of publications and one of them helps physicians figure out how to treat it. There aren't many physicians who are qualified to treat severe WED/RLS. As noted by another poster, it is also not easy to find a physician who is willing to prescribe opioids, sometimes because they are not familiar with the literature and sometimes because they just aren't comfortable with them.

I've used opioids alone and in combination for my very severe WED for over 6 years. Here's what I've learned - at least as applies to me.

1. Dependence occurs quite often. So does tolerance. I avoid both by taking a break with another drug.

2. Opioids work very well for many of us - definitely a route to use when nothing else works.

3. Other drugs work well, too, and should be tried first. As I've tried over 16 drugs alone of in combination, I'm comfortable using them. First drugs to try have been the dopamine agonists. This is starting to change. There are many issues with them. I suggest NO one use them regularly unless they get their serum ferritin tested and it's at least 100 (this is in keeping with the latest research). Otherwise, one should take a break from them frequently, too. Pramipexole and ropinerole have caused gambling, sex, and food addictions in Parkinson's and WED patients. People with known issues should not use these drugs. They also cause something called augmentation - where they symptoms worsen because of the drug. I had many issues with these drugs, but I can alternate these with opioids every other night and avoid all the issues with dependence, tolerance, rebound, and augmentation. More and more physicians are using Horizant, Lyrica, and gabapentin. Horizant seems to work better than gapapentin for many people - definitely worth a try. Benzos should be avoided. The Z drugs do not stop the sensations, but can keep you asleep if you have other sleep issues.

I learned all of this by necessity. There are some great books available. And some very good message boards devoted to it. If anyone needs to manage frequent WED that requires treatment, it's worth looking into both.