Restless Legs Syndrome (RLS) Discussion Board

I was wondering if a treatment plan for treating RLS where the main thing that alleviates the symptoms is an opioid?I have RLS 24/7,does that make opioids a bad option as a main ingredient?I was planning to pair them with a neupro patch and horizant but since the patches can cause augmentation I wanted to not rely on them as much.Can a good sense of relief be achieved?

An opioid was the very first medication used to treat RLS many, many years ago. It is now held as the final option after iron therapy, the anti-seizure meds (gabapentin, Horizant and Lyrica) and the dopamine agonists. It can either be used alone or in combination with the other meds.

As for using it by itself, there are a number of options. Some use one of the shorter acting meds and take them several times a day. Others use a longer acting med (eg. methadone, oxycontin or Tramadol ER) and only take one pill/day.

As for your 24/7 symptoms, that may well be a sign of augmentation because RLS should only cause symptoms at night unless you are augmented, in which case symptoms can occur all day long and will spread to other parts of the body. If you are augmented, then an opioid is almost always the preferred next level of treatment (assuming that your iron levels are not depressed).

So, to answer your main question, yes it is possible to treat RLS using just an opioid and many of us do just that.

What are you taking now, Pancake_muncher?

Rustsmith wrote: ↑

Fri Aug 07, 2020 1:44 am

As for your 24/7 symptoms, that may well be a sign of augmentation because RLS should only cause symptoms at night unless you are augmented.

The thing is that i have never been on a dopamine agonist.My rls is like that by itself and it hasn't been caused by augmentation.

ViewsAskew wrote: ↑

Fri Aug 07, 2020 4:42 am

What are you taking now, Pancake_muncher?

Nothing.It got severe 2 months ago and I am now looking for suitable treatment options.Could you guys tell me what % of people augment if you know by any chance.Everywhere I look its different.

One of the requirements for a diagnosis of RLS is that

the urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day

http://irlssg.org/diagnostic-criteria

As for the percentage who experience augmentation, the number that is usually used is that 8% per year. So, 8% augment in the first year that they use a DA then 8% if the remaining population augments in year 2, and so forth. But the exact number varies a little by the medication used. If I remember correctly, the value is higher for ropinerole than for pramipexole, And the value for carbidopa/levodopa is very high, almost to the point of guaranteeing augmentation in the first year of continuous use.

Since you have not started treatment, here is a publication that applies to you when it comes to deciding what form of treatment that you need. It also does a good job of discussing augmentation. https://www.sciencedirect.com/science/a ... 5716000563

Thank you friend.I am only 22 and i dont know how I am going to deal with this since DA dont work forever.I hope they think of something soon or I am screwed.As for the criteria it does get worse around 22:00.

Have you had your iron levels checked? Your doctor should do a complete iron panel PLUS your ferritin level. Your iron panel results should be in the normal range, but don't accept "normal" for your ferritin number. Find out the number! Normal for those without RLS runs from 20 to 300, but for those of us with RLS you need to have a ferritin number of at least 100. If you are anemic (your other iron numbers are low), then your doctor may be willing to do an iron IV treatment. That provides help to a lot of us. If you are not anemic, then it becomes a bit more challenging to get a doctor to do the IV treatment right now even though it might help. BUT, do not start taking iron supplements without your doctor's guidance since too much iron can cause organ damage.

The latest RLS treatment protocol recommended by the experts starts with iron therapy (IV or oral iron) followed by the use of an anti-seizure med (gabapentin, Horizant or Lyrica). These meds help many and do not cause augmentation. The dopamine agonists are the next step, but many doctors still think that this is where they should start because they are not familiar with augmentation. Opioids are the final step and are reserved for use when all the other meds have stopped working.

Finally, there is a great deal of research work currently being done that is looking at the basics of the mechanism of RLS. Work done at the NIH two years ago may have identified a new line of treatment that avoids many of the problems with the current medications. Another line of investigation is looking at the mechanism of augmentation with the potential of creating a sort of anti-augmentation modification to the use of the dopamine agonists. So, the future is not as gloomy as it might appear, especially when you consider that the research for the current RLS treatments were only started in the early 1990's.

I am not aenemic .My serum iron is 25mmol/l.I will have to check my ferritin.

Just to say that I also was was suffering from RLS 24/7 day and night before I started any medication.

Rustsmith wrote: ↑

Fri Aug 07, 2020 10:03 pm

So, the future is not as gloomy as it might appear, especially when you consider that the research for the current RLS treatments were only started in the early 1990's.

I dont know my friend. I hope that my ferritin is low and getting the amount up will help me enough to where I can go without meds for some time because I don't know how I am supposed to not augment for 40+ years if they dont find a way to fix it.The future is all doom and gloom for me right now.

Polar Bear wrote: ↑

Sat Aug 08, 2020 3:26 pm

Just to say that I also was was suffering from RLS 24/7 day and night before I started any medication.

And how is it now?Is it under control?

Pancake_muncher it would have been easily 25 years ago that I had RLS 24/7 prior to medication. And I suffered for many years until I was on holiday in the US and saw a tv advert for Requip/ropinerole. I started on that and was on it for many years with only partial success.

Then I found this discussion board and learned so much.

Eventually adding in Codeine and more recently adding Pregabalin while I very slowly microtapered off the ropinerole which was at much too high a dose. I had also augmented.

My symptoms are controlled the best they have ever been. Not perfect but manageable most of the time.
I am now using Codeine and Pregabalin together with Kratom.

This of course does not mean I am sleeping. I suffer greatly from insomnia / sleep apne a which is at present untreated because of overload in the UK NHS hospital system. I am on a (3year) waiting list for that.

Did it stop you from holding a job?Thats what I am most afraid of.

No it didn't. I was always in full time work employment up until I retired at 60.

Prior to reaching my current treatment........ A lot of the time I worked on only 3 or 4 hours sleep and occasionally without sleep.
There was a time when I put a coffee table on top of my desk so I could work while standing because of RLS symptoms.

How I wish back then that is found my current regime...which basically was getting off ropinerole.