Question

[Meg123abc]

I a m.j confused about people asking for opiods for RLS. I AM CONFUSED. I have read several First time posts to see a doctor,and , hopefully you will GET opioids. ??? Sounds more like an addiction problem . RLS sucks. But, seriously, opioids?

[Madlegs1]

Opioids have offered the most efficacious treatment for RLS for about 300 years.

Please don't buy into the current scaremongering over the opioid misuse panic.

That is mainly due to doctors misprescribing opioids quite unessesarily and inappropriately.

Opioids at a very low dose, given to individuals who are not of addictive personality, is entirely appropriate, and of absolutely no danger to anyone.

The benefits to the patient and wider society are inestimable.

I hope you will take some time to research this topic in greater depth ,and may wisdom guide you.

Cheers.

[LotteM]

Thank you Madlegs. You said it well and eloquently. Although the value of reason and wisdom to guide us seems heavily inflated in these days of alternative facts.

[TheDoDahMan]

Dear Meg123abc,

My life was misery. I had tried dozens of creams, sprays, devices, prescription drugs, crazy remedies, on, and on, and on. I, who had never known depression, began thinking of ways to end my life. All because of the psychic, emotional, and physical destruction of not being able to get more than 2 or 3 hours of fitful sleep per day.

Then I finally found a doctor with the knowledge, courage, and wisdom to prescribe LOW-DOSE opioids (methadone in my case). All of a sudden I got my life back. My black mood changed to sunny days. Thank goodness that such a medicine exists!

Am I supposed to have so deeply bought into this moral panic that has attached itself to the prescribing of opioids, that I would disdain their use and continue on with a life not worth living? I just dare not let YOUR fears overrule MY wellbeing.

[elsie1920 in reply to TheDoDahMan]

Bravo Sir.

[BeachGolfer]

Meg, taking the same low dose Oxycodone at bedtime on and off for 7 years is called treatment not addiction. I’ve had to go off of other RLS treatments due to severe side effects thus returned to Oxycodone which is mostly effective. Sadly the hysteria about opioid use has kept too many people from getting the treatment for RLS that may be best for them.

[Hidden]

Opioids can be very effective for RLS so shouldn't be dismissed as a valid option for treating RLS especially when other medications have failed. Licensing authorities do recognise this.

As with all other medicines you have to weigh up the benefits and costs and in this opioids compare relatively well as compared to the other potent drugs used fior RLS.

Once you have this information you can choose your preferred option.

[Joolsg]

Seriously? Opioids were the first med prescribed for RLS in 1600s by Dr Willis.

Here’s the link to the opioids study. They’re safe at low dose as long as the patient has no history of abuse.

Addiction is not the same as dependence.

I’d rather be on opioids than dopamine agonists which are very dangerous drugs ( read all the latest posts to see the suffering they cause).

mcusercontent.com/068feaf31...

[DicCarlson]

"The aim of this article is to summarize the basic science and clinical evidence supporting the use of opioids for the treatment of refractory RLS and to outline a responsible approach to their use." mayoclinicproceedings.org/a...

[Hidden]

Please check out the RLS.ORG website on the increasing practice of opiate use for restless legs syndrome. For many of us it has made the difference between life and death, I was with an RLS support group and know of two individuals that took their own lives rather than put up with 24/7 RLS. I had been through every medication which failed to control my RLS and was actually looking at this as an alternative. I would like at my husband sleeping soundly every night and just wanted to rage at his even though it was not his fault.

Being on opiate have saved my life. Oxycodone control them to some extent and it was wonderful. I got them from a sleep medicine doctor. I would occasionally have days with no RLS and I did not take them. Does that sound like the actions of someone that is addicted to them?

But, as the disease is wont to do, it began to increase ss I have aged. My sleep medicine doctor who I had at the time (i left his practice due to other issues such as waiting to be seen at 4:00 PM for an 8:00 AM appointment every time or the office staff who brings in their kids to the office and they run everywhere out of control while the office staff is yelling at them) started me on methadone. My neurologist continued it, Methadone is a medication that one becomes physically dependent on but not addicted to as an addict would be who it taking them for psychological need. It is like many of the RLS drugs like gabapentin or miripex (I apologize - I live in the USA and and used to trade names rather than generic names); you can not just stop it without tapering off it or there are bad side effects from them because you become physically dependent on them.

If you do not want to use opiates, I understand. If you are so dead-set against them then you should not do it, but to criticize those of us who are lucky enough to have physicians who are using the latest information to treat this horrid disease by calling them addicts is insulting to fellow RLS members and their physicians. I breaks my heart that so many of our members, through government regulations or physicians who are afraid or ignorant of the latest treatments or the government, are suffering needlessly.

There is a lot of evidence out there that people with RLS benefit from these drugs and do not have nearly the rate of addictive issues. I cannot quote exact figures, but I have read the rate of addiction to opiates in normal people on long-term opiate use is something like 1 in 4 people. In RLS sufferers, the rate is considerably lower, something like 1 in 20 or less.

[wildlegs]

I’ve been taking Tramadol for 15 years and five years ago it wasn’t an opiate now it is. I find it 90% effective and recommend it. The hardest part is finding a doctor who will prescribe it to you. I started with 100mg but find 300mg works the best.

[slim1953]

Yes opoids. I have had this over 40 years. Without meds 1 spasm per minute lasting 8 hours. Every night. That was in 1996 when it was finally diagnosed periodic limb movement with restless legs. Very painfull and exhausting. God knows what it would be like now without meds. I am terrified to even try. The last time was 10 years ago in hospital. They had to give me morphine to stop the spasms. Took 3 to hold me down for the injection. Both arms and legs going.

[elsie1920]

Opiates when used appropriately are a godsend, whether for serious pain or moderated to severe RLS. Please don't perpetuate the myth that everyone who takes opiates gets addicted. As others have said, only very small doses are needed to quell RLS and for some it's the only medication they can tolerate.

[Wigglelegs]

After trying all the usual meds since the 90s I accidentally found that opioids worked after getting some dental work done. They prescribed me a pain killer that actually killed the jerking in my legs. I slept through the night for the first time in years. Now I have to go to a special pain management clinic because my neurologist is afraid to prescribe Tramadol.

[58anniem]

Having suffered from severe RLS & PLM since childhood along with other auto-immune problems and nothing ever helping, i suffered and suffered. Then after 2 big gynaecological ops quite close together and waking up in hospital straight after, the first thing I noticed was my QUIET legs! oh bliss! - it was something I hadn't experienced for years and the lack of pain and tenseness was as noticeable as when the pain is severe! - it turned out to be due to the dyhydrocodine they had given me for the op pain. - That was 6 years ago and I have been on it ever since to treat the RLS & PLM and it is the only thing that also helps me sleep well. (I have sleep apnea and am like a washing machine in bed without it. I only have one 30mg at night (mid eve) and it caaaaalms me down. I get such fizziness all over my body (feels like inside veins) and it all calms.

It has totally saved me. I have tried so many other treatments and keep coming back to the same. I do however ensure that I have at least 2 nights a week when I dont take it and I suffer - but at least that way I know for my self that I am not addicted. (I also use rotigotine patches).

I can only praise it as a treatment for me.