There was a great article from the latest issue of Nightwalkers which is the quarterly journal from the Restless Legs Syndrome Foundation. They were describing some of the studies on opiates and RLS. There was lots of information on the ramifications of using opiates like oxycodone and methadone for RLS treatment. This would be great information to share with your physician if you are not being adequately treated with dopamine altering drugs. I read it then send it off to my physician to read.
I wish that the Foundation would publish a guideline paper for opiate use in RLS that we could give out to doctors. It would help so many doctors understand the overall risks and benefits of opiate use for severe or refractory RLS.
For those of you who are not aware, this magazine is published quarterly by the RLS Foundation. Their address is RLS Foundation, 3006 Bee Caves RD, Suite D206; Austin, TX USA 78746. Their phone is (512) 366-9109 and email is info@rls.org. Website is rls.org . Other information is RLSfoundation.blogspot.com and discussion board is bb.rls.org . Cost is $35.00 in USA & Canada and $45.00 for international. Funds are in US dollars or US Bank.
This is a great magazine. I discovered this article one night online when of course I couldn't sleep. I took it to my new neurologist here in Canada and he actually looked at it! Take care
So lucky!! Just yesterday I shared one of those with my doctor and well she just took it and glanced at it and kept it aside. Next thing she asked me to increase my dose of Pramipexole. No words!!
Haha! I have this same article printed out and ready for my first appointment with a neurologist in a couple of weeks. I truly hope it helps convince e them to give me some relief!
Use of opiates in moderate to severe or refractory RLS is a sea change for physicians and the government. I am lucky enough to have a physician who was willing to read and learn about the latest advances in RLS.
We have crafted out a treatment plan with methadone, oxycodone, Savella, and Lyrica that literally has saved my life. I have known 2 people that either committed suicide or attempted it because of their RLS. I was not far behind them with my 24/7/365 RLS that was refractory until I found a knowledgeable and understanding physician.
I am an addict with respect to recreational drugs (pot) who has been clean and sober for 37 years. I have never abused these opiate drugs (we did have to increase the methadone due the progression of the disease after several years on it) nor felt the slightest desire to do so. I am just grateful to have some relief (it is not always total) from my RLS.
I know this change in treatment is a huge issue with the government and physicians, but the best way is to bring it to their attention through education. You may have to do this over and over. Sometimes, just asking for a trial with these medications and reporting back with your physician as they want can work.
I have been on oxycodone for several months now, after augmenting out of all dopamine agonists and unable to tolerate alpha 2-delta drugs. It is the ONLY thing that enables me to sleep at night and function during the day, so I am MOST grateful for this class of drugs. However, "daytime somnolence," as it's called, is a problem for me. Unless I am physically active, I can't stay awake during the day. Reading or prolonged concentration on a research topic is out of the question. That is a serious loss to me, as I am a researcher/writer. In fact, even driving isn't enough activity to keep me awake. I wrecked my vehicle due to falling asleep at the wheel. The sleepiness came on so suddenly that I did not realize I was sleepy! Thank the Lord, my life was spared, but it was a close call.
I take the lowest possible effective dose, as I hate the daytime sleepiness, but still I have this problem. I take 10 mg around 8 pm, and when the legs wake me up around 1 am, I have to take another, smaller dose of 5 mg, if legs are very "insistent," or 2.5 mg, if less so. It seems to depend on how much walking I did the previous day, as much walking greatly increases RLS for me. And it also depends on whether I ate much fruit, as the fructose also causes an increase in RLS for me. (Berries are low glycemic; I can tolerate them, but not other fruit.) I avoid the other triggers such as caffeine and gluten (gliaden).
Bottom line: I need the oxycodone to survive, as I can live longer with the drug than without sleep. However, it is far from ideal. I am waiting to see if an iron infusion will be effective for me. Results take up to 3 months to manifest, and I am only 5 weeks into the waiting period. I'm also taking oral iron (ferrous bisglycinate every other day, around 56 mg with vitamin C), and very slowly my low ferritin level is coming up--23 points after 4 months of taking oral iron. I'm only at 64, when my level needs to be between 200 and 300. So it's a long journey, but at least I'm on the road....
Hopefully some of this narrative will help others.
Hi grand piano man. I augmented out of Pramipexole after about four years. Prior to that I was miserable for years.. I saw dr Buchfuhrer in January of this year and he took me off my pramipexole cold turkey and started me on Methadone 10 mg before bedtime. It took several months but I am able to sleep pretty well most nights. I also had iron infusions in June...and my Ferritin level is know over 800. I had hoped it would make a big difference in my RLS ( like go away) but haven’t really noticed any big improvements. I now try to stay up until I can hardly keep my eyes open and fall asleep quickly but still sometimes wake up 1–2 hours after bed with pain. I think my posture may have an effect... such as holding my phone and reading can aggravate it... so yes movement can help. And yes, Methadone has made me so sleepy during the day. I was never one to nap but now can hardly wait to lie down and sleep after lunch or before. Luckily I am now retired. Sometimes I try to decrease my dose to 7.5 mg but that doesn’t work more than a night. Maybe after that 3 month mark I will tell a difference with the iron infusion... coming up soon. Thank you for your words... Graham... are you out there? You had written me to let you know how I was doing if and after my iron infusion happened!
Dr. Michael Silber of Mayo Clinic - also on RLS Foundation Scientific and Medical Advisory Board - describes an article from Mayo Clinic Proceedings " Opioid Treatment for Refractory RLS" on YouTube:
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A really good (though technical) paper written by the Research doctors from American RLS group
Pet Peeves in Describing RLS, (and this is everywhere, on every site that has to do with RLS.)
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