Restless Leg Syndrome

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.

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.

The dill Pickle swig is a new one. Thanks

@bill54321 Thanks but it has to be the dill not sweet . Another one is mustard . When out my friend would take the mustard packet and take it down to me that took courage

@lynnkay1956 and @suecreader LOVE to hear that someone else gets the opposite effect that Benedryl is supposed to impart! It "wires" me!!! Certainly cannot take it for "sleep"! I was taking Requip for the RLS, but as with you, had to start increasing the amount. So my dr switched me to Mirapex - which I thought would be the answer!!! For 10 days I had no leg movement! But then it began again, and am now increasing the Mirapex dosage! All the while I am taking gabapentin, and Tramadol, tho' only in the late afternoon and at bedtime. As with you, no alcohol or caffeine after 2 or 3 pm. Thinking of asking my dr about Neupro? Also thinking - what if ... one could alternate Requip and Mirapex? ...daily? weekly? monthly? Just a thought! I also have pain from spinal stenosis and/or neuropathy, so when you add the jumping around from RLS or PILM it becomes TERRIBLE!!! You dread evenings and night and would do almost anything (or take anything!) to get a decent few hours sleep! The Mirapex makes me sleepy, so it is wonderful to take at bedtime - however that effect lasts into the next day and I am afraid to drive or do anything that requires my full attention. What to do...

I tried alternating Mirapex and REquip when one augmented and that worked for a while but since they are both the same class of med that doesn't work for me anymore. MIrapex works great for me until it augments and then I have to take what my neuro doc called a "drug holiday" when I really don't sleep at all. I take this holiday for at least 3 weeks (by then I'm a total wreck) and then can go back on the Pramipexole for 2-3 months until it all starts again. Have tried Neupro patch, carbadopa/levidopa, Lyrica, gabapentin but nothing works. I get a little sleep with oxycodone but have trouble getting it prescribed. RLS is ruining my life as I have to plan these "holidays" when nothing else is going on in my life - can't read, can't concentrate on preparing lectures, can't knit or even spend time with friends. As other people have said, I dread going to bed and having my legs jump!

Hello @susanelaine and welcome to Mayo Clinic Connect. I am sorry to hear about the arduous process you are going through to get relief from your RLS symptoms.

I am wondering if you've had your blood iron levels tested to see if they are running low? If so, are you taking an iron supplement or have you altered your diet to better consume iron-rich foods?