Hi Jim,
Here's my experience, and please, professionals jump in. I was diagnosed with Severe RSL/PLMDS (which is now OLMDS). at the New Haven Sleep Center in Connecticut back in 1992. Over the years, we tried over 27 medications and supplements......many of which I've seen in this forum. Clonazepam worked well for 2 years (1994-1996), then abruptly stopped working. After running out of ideas, I made an appointment with the (then) Chairman of the RLS Foundation (Dr. Ehrinberg) at Tufts New England in Boston. He told me I'd tried everything, and he couldn't pull a rabbit out of his hat, but then he asked if I'd tried opioids. I said no, no one had ever suggested that. He said that in his practice it worked very well when nothing else would. I said I didn't want to be seen as a junkie, and have pharmacists give me THAT look, but he said, "if it is appropriate and works, then there is no reason not to use it."

I put that idea aside until I retired from the USAF, and in 2002 apparently kicked my wife in the side during sleep (the Organic Leg Movement During Sleep). She said that either I was going to try that medication or we were getting separate beds. My GP was not averse to the idea, the common dosage is between 5mg and 40mg. As we worked up, the RLS stopped at 20mg, and the OLMDS stopped at 30mg of hydrocodone. It worked perfectly for 18 years (the euphoria wore off after 5 years, and it just did what it was supposed to). Even when I moved to Iowa 12 years ago, the prominent sleep neurologist agreed that this was appropriate, and urged my GP to continue.

When opioids sudddenly became "bad," and the CMS started penalizing physicians and pharmacies that dispensed them. My GP tapered my off of them and now I have uncontrolled symptoms. We live in a "Culture of Pain" where even serious pain isn't treated with opioids, but :I noticed that Mayo still recommends opioids for RLS. I don't know how they distance themselves from the lunacy of letting people exist in pain and conditions that require them, but you might contact a sleep specialist at Mayo and discuss this. It was only last year that I read a paper from Mayo recommending this treatment.

Good luck.....I definitely feel your pain (actually, literally, I tore a rotator cuff and also ripped open a bicep, but can only down NSAIDS and hope I get surgery before the NSAIDS kill my kidneys and liver). Many have had great success with RSL and opioid treatment. Look up Dr. Ehrinberg relative to RLS and read some of his notes.
Cheers, Dave.

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