Augmentation or ???

[Brenda B]

Hi, seems I only come here when I get to the end of my rope and don't know where else to turn... Someone here has always helped in the past.
I'm a 67 year old female, I've had RLS for 27 years after a back injury. I have been on every drug known to mankind for RLS and a few that aren't.
I have seen close to 20 doctors including 3 Mayo neurologists, and I'm 'seeing' one now, online. The reason I'm here is: a year ago in April I started a process of getting off the Neupro patch as it's making me worse. I'm also on methadone (20)mg. I started at 4mg of Neupro and have lowered it to 1/2mg and was doing pretty well. I've always had bad spells in between the good ones but they usually come every 4-5 weeks and last 3-5 days. The weekend of Easter I thought that was the problem. I wasn't having RLS in the daytime (like I had for years), but suddenly that weekend I started having RLS at night. It would hit me about every 1 to 1 1/2 hours, I'd lay on a heat pad and did a lot of squrming, rocking back and forth, mostly moving my spine and legs and could get it stopped but it would wake me again an hour later. Sometimes this would last until 3-5AM, sometimes even until 7AM. Since Easter, I've had only 5 decent nights of sleep (about 1 every week/week & 1/2). I've NEVER had this happen before! I tried (hesitantly) to go back up to 1mg of Neupro but it didn't touch it, even upped the methadone a litte (which I probably shouldn't) but that didn't help either. I experimented with the daytime schedule I was taking methadone to using it closer to bedtime. Nothing helps. I had not made any changes to my diet, medications, stress levels (except for the lack of sleep), daily routines.... nothing had changed. My Mayo doctor wants me to have an iron infusion but in all these years, low ferritin levels have never been the cause of my RLS. My primary is scheduling the infusion. It's been like someone just flipped on a switch and I don't know how to turn it off! I'm so sleep deprived, some days I can hardly function, I try to sleep in the daytime, but RLS will wake me every time. I'm running out of drugs to try and new doctors to see. Has anyone else had something like this?
Brenda

[Rustsmith]

I don't have any personal experience to share, but one of our members also had RLS that was associated with back problems. Her meds were not that much different than yours. Then she relocated to a different state where her doctors refused to prescribe methadone. She eventually ended up getting a spinal stimulator for her back problems. After many adjustments to the settings on the stimulator, her RLS got much better. Hopefully she will see this and respond with more details.

[Brenda B]

Thank you Steve, ironically, I have a spinal stimulator in my back, also. The Dr even mentioned that it might stop my RLS, sadly the technician who helps me regulate it will not work with me and RLS (because it's not been approved by the FDA for RLS and she's afraid she'll get in trouble). It really doesn't do much for my back, either.