Can a treatment plan revolve around opioids?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Phew.That took a boulder off of my shoulders .I know that sympathy doesn't mean much(to me at least but maybe I am just a selfish person) but I wish that you get the treatment you need for sleep apnea.I will get my ferritin checked out and maybe update you guys after.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

So....here is what I'd say after 15 years of trying things and being on this board.

First, get a serum ferritin test. Anemia can cause it, but many of us with primary RLS/WED are not anemic. My serum ferritin was 8 at one point, yet I met the criteria to give blood. An iron infusion helps a significant percentage of us. It reduces my needs for meds by about 45-55%. That is important as I use opioids.

Second, educate yourself - which you already are doing - yay you!. Here is the best place I know because we post research as soon as we find it and many of us see the research docs so get insights from them early. I didn't know enough when I started and made mistakes because of that. If you have the money, buy the best book out there on treatment - Clinical Management of Restless Legs Syndrome, 2nd edition, by Lee, Buchfuhrer, Allen, and Hening.

Third, see what may have triggered it. What happened when it went crazy on you a couple months ago? Accident? Stress? Diet change? Diet helps a significant number of us - not all by any means, but enough that it's worth looking at.

Fourth, if you decide to try medication, here is what I'd say. Start with the gabapentin family. There are 4 options, IIRC. And, with severe RLS/WED, consider stacking/combining to keep doses lower of any individual med. Consider adding herbal options - medical MJ helps some of us with insomnia and others with symptoms, kratom does the same.

Fifth, if you can at all afford it, go to one of the RLS Quality Care Centers. I saved my pennies during a time when I was unemployed and flew to California from the midwest US to see Dr. Buchfuhrer. Best decision I ever made. Nowadays, there are QCCs in California, Texas, Tennessee, Minnesota, Georgia, Maryland, Connecticut, Massachusetts, Austria, Switzerland - hope I didn't forget any.

Sixth, don't rule out that this might be RLS/WED plus something else, or something else alone. 24/7 RLS happens - but it is relatively rare. As Polar Bear noted, she'd had it that way a long time before she found this board. On the other hand, we've also had other people who were diagnosed by a doctor as having RLS/WED only to find out that they had small fiber neuropathy plus RLS/WED, or small fiber neuropathy alone. We have another member who had it 24/7 when he was caretaking his wife. When she died, his symptoms stopped. Completely - so don't rule out the impact of stress, either.

Seventh, keep doing what you're doing - asking questions, trying to find a good starting point. This board didn't exist when I first started and there were few resources. I would have made completely difference decisions if I'd had this resource.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

It got worse around the time when my brother was diagnosed with (I dont know how it is in enhlish but please bear with me) dog tapeworm???It has gotten better as he has been recovering quite well.As for the other ilnesses: I also suspected that it may be neuropathy but ruled it out as i dont have any pain or limb weakness which a neurologist told me are the essential symptoms. I don't think that i have any form of arthritis or any disease that could cause rls.Maybe ill look around some more.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

Sounds like English is not your first language - you are doing very well with your English!

I wonder if there is some gut thing going on that is inhibiting iron getting to your brain? One of the reasons some people may have luck by changing diet is that the gut can impact iron absorption as well as how well iron gets transferred to the brain. I am not sure what the disease is that your brother had - what is the name in your native language? Maybe that can help us find out something about it.

Are you in Europe? Most of our members who do not speak English are. Austria and Switzerland may not be close to you at all, depending. We do have a member here from Germany who participates regularly - and he may have ideas of where to go if you are in Germany.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

English is indeed not my first launge.I am from Latvia.As for the disease it was cause by some parasites that are transmitted from dog's feces on to humans.My brother loves dogs so thats not surprising.They cut out the cysts via operation and now he is recovering.One member said that i may have some other disease besides rls that explains why i have it through out the day so i got to thinking and came up with nothing.Should go to my doctor for re-evaluation?

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

Pancake_muncher wrote:
Sun Aug 09, 2020 8:09 am
English is indeed not my first launge.I am from Latvia.As for the disease it was cause by some parasites that are transmitted from dog's feces on to humans.My brother loves dogs so thats not surprising.They cut out the cysts via operation and now he is recovering.One member said that i may have some other disease besides rls that explains why i have it through out the day so i got to thinking and came up with nothing.Should go to my doctor for re-evaluation?
Wow. I have NO idea! Hopefully some others will respond, too.

So glad that your brother is recovering.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Yeah I am also glad that he is getting better.Could I ask what meds you take for rls and how well do they work?And also how one might go abut treating rls that is 24/7.

Rustsmith
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Location: Colorado Springs, Colorado

Re: Can a treatment plan revolve around opioids?

Post by Rustsmith »

A condition that is similar to RLS is "Akathisia". Akathisia can occur throughout the body whereas RLS tends to be limited to the limbs but RLS can also occur elsewhere. For example, I occasionally get it in my abdominal muscles. Akathisia can be worse at night, but tends to not be as circadian as RLS, so it is more 24/7. A condition that is related to RLS is Essential Tremor and often occurs in patients who also have RLS, but I don't think that this describes what you have said that you experience.

Another possibility is that you have RLS and something else. Neuropathy is something that can occur along with RLS. Neuropathy occurs 24/7, so the question would be whether your symptoms are the same at night and during the day.

As for treating RLS that is 24/7, the first step would be iron therapy to attempt to get rid of the RLS or at least to reduce the severity of the RLS. There are also a few medications that you only use once/day. These include the Neupro patch (rotigatine, a dopamine agonist) and two different opioids (methadone and tramadol ER).

As for my personal experience, I am in the small group that did benefit from iron treatment. I used the Neupro patch for 15 months, until I augmented on it. I now rely upon the lowest dose of methadone combined with a very small dose of pramipexole and gabapentin. I have to change the opioid (methadone) to another opioid occasionally due to side effects. The pramipexole allows me to keep my opioid dose low and the gabapentin helps me fall asleep. I also use an edible marijuana product that is high in THC to help me stay asleep.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16237
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

Pancake_muncher wrote:
Sun Aug 09, 2020 7:31 pm
Yeah I am also glad that he is getting better.Could I ask what meds you take for rls and how well do they work?And also how one might go abut treating rls that is 24/7.
I take both an opioid and a dopamine agonist. I use kratom and medical MJ as needed for insomnia. I start taking medication about 6 hours after I awaken and split it in two doses at this time. It works well, but it's taken me many years to get it right. Iron infusions have been very helpful for me.

Most people with 24/7 use a combination of things. You almost have to because otherwise there are issues with tolerance, augmentation, or side effects.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Can a treatment plan revolve around opioids?

Post by Polar Bear »

I have 14 tablets of 15mg Codeine Phosphate daily taken as follows:
9am x 1
1pm x 2
5pm x 4
9pm x 4
3am x 1
This is 12 tablets. The 2 extra cover if I have breakthrough, or if I was going to the movies, or a long car drive. If I don't need them they go to building up my stash. A stash is a safety net in case there is a delay with a prescription or indeed a particularly bad night.

I also take Pregabalin/Lyrica 200mg x twice daily.I
This helps with RLS and also neuropathy. In theory it should help with sleep but unfortunately my sleep issues do not respond.

I buy Kratom Red Bali and use this most nights. It is illegal where I live but such is this condition that 'needs must'. The Kratom will give an added boost to calm my legs but does not help my sleep.

My GP will not increase my Codeine as it is at the daily maximum and will not consider a stronger opiod. However should I get desperate in this regard I will attend privately with a Consultant Neurologist and hope for his (unlikely) support.

Best wishes to your brother.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Rustsmith wrote:
Sun Aug 09, 2020 8:24 pm
A condition that is similar to RLS is "Akathisia". Akathisia can occur throughout the body whereas RLS tends to be limited to the limbs but RLS can also occur elsewhere. For example, I occasionally get it in my abdominal muscles. Akathisia can be worse at night, but tends to not be as circadian as RLS, so it is more 24/7. A condition that is related to RLS is Essential Tremor and often occurs in patients who also have RLS, but I don't think that this describes what you have said that you experience.

Another possibility is that you have RLS and something else. Neuropathy is something that can occur along with RLS. Neuropathy occurs 24/7, so the question would be whether your symptoms are the same at night and during the day.

As for treating RLS that is 24/7, the first step would be iron therapy to attempt to get rid of the RLS or at least to reduce the severity of the RLS. There are also a few medications that you only use once/day. These include the Neupro patch (rotigatine, a dopamine agonist) and two different opioids (methadone and tramadol ER).

As for my personal experience, I am in the small group that did benefit from iron treatment. I used the Neupro patch for 15 months, until I augmented on it. I now rely upon the lowest dose of methadone combined with a very small dose of pramipexole and gabapentin. I have to change the opioid (methadone) to another opioid occasionally due to side effects. The pramipexole allows me to keep my opioid dose low and the gabapentin helps me fall asleep. I also use an edible marijuana product that is high in THC to help me stay asleep.
1.I have read aboit Akatisia and that it is a side effect of antypsychotics.I have never taken such medicines .
2.I will ask a neurologist if he can test me for anything else but I will need to do some research and give him a list of possibilities ,maybe do a verbal test and let him choose if i need to be tested further for something.Thsnks for the help .You guys are great. :mrgreen:

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Polar Bear wrote:
Sun Aug 09, 2020 8:47 pm
I have 14 tablets of 15mg Codeine Phosphate daily taken as follows:
9am x 1
1pm x 2
5pm x 4
9pm x 4
3am x 1
This is 12 tablets. The 2 extra cover if I have breakthrough, or if I was going to the movies, or a long car drive. If I don't need them they go to building up my stash. A stash is a safety net in case there is a delay with a prescription or indeed a particularly bad night.

I also take Pregabalin/Lyrica 200mg x twice daily.I
This helps with RLS and also neuropathy. In theory it should help with sleep but unfortunately my sleep issues do not respond.

I buy Kratom Red Bali and use this most nights. It is illegal where I live but such is this condition that 'needs must'. The Kratom will give an added boost to calm my legs but does not help my sleep.

My GP will not increase my Codeine as it is at the daily maximum and will not consider a stronger opiod. However should I get desperate in this regard I will attend privately with a Consultant Neurologist and hope for his (unlikely) support.

Best wishes to your brother.
That is some plan.Glad it works!Where do you live that Kratom isn't legal?Isn't it FDA approved?

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Can a treatment plan revolve around opioids?

Post by QyX »

The problem is: when your RLS is severe enough that doctors are willing to prescribe opioids, then it is already bad enough that in most cases opioids alone can't do the job.

Most doctors want to exhaust all other options before prescribing an opioid so while the answer to your question would be yes, it is rarely done it practice.

Also many RLS patients who eventually require opioids also often seem to require some antiepileptic. It seems to be a quite common thing and you can use iron tablets and iron i.V. infusions to keep the dose of conventional meds low.

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Hopefully I don't have to go there yet .I will go get a blood test in friday.Hopefully they find my iron and ferritim are low so that I can be prescribed iron tablets.I am hoping that it will help.

Pancake_muncher
Posts: 21
Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

Also the first time i read through the other replies I zoomed through because I was busy. But when re-reading someone said that certain triggers could make it worse and so I googled trigger and what do you know cigarretes,caffeine and refind sugar were there.I live off of those things so I will try to stop them and see what comes of it.

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