Restless Legs Syndrome (RLS) Discussion Board

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...

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 ...

Thank you again. I could go back to Silber but that's a 4-5 hour drive to Rochester, MN. We ranch for a living and own land and my husbandf and son-in-law work together. This is all we have and just cannot, would not think of moving. I've sent the info about opiods/RLS on to my newest neurologist. W...

Thanks Ricky, I've found that MANY drugs make the RLS worse. Most anti-nausea. anti-dizziness drugs, lamisil, Jublia, many sleep aids, lots more I can't even remember. It makes treating other diseases/disorders really difficult. Lyrica made me sick and didn't help the RLS, carbemazepine made me wors...

I'm sure you all are right. Thank you so much for the information and advice. I have found though, if I'm even 1 hour late in changing the Neupro patch, I will go though hell for 2-4 more hours. I'd have to find a doctor who would increase the methadone dosage considerably to get me through coming o...

Thank you, I realize that it's probably augmentation. The Mayo neurologist who put me on the 4mg patch (started at 3 mg to get me off Mirapex along with methadone but it wasn't enough) told me that Neupro was a better alternative and would cause much less augmentation. Well that was 5 years ago. It ...

Hi, it's been a long while since I posted but I'm kind of getting to the end of my rope and need advice. First I'll start out with: I've had RLS for 26 years, I've been on 20 different meds for RLS (some conventional, some were pretty off the wall). I've seen 17 different doctors from PAs and family...

I agree! Most people don't realize how destructive it is! I wish I had the last 25 years of my life back as well as all the money spent on doctors, neurologists, spine doctors, MRIs, medications and emergency room visits (not RLS but caused by it). I even lost most of the vision in one eye (the resu...

I have no idea, mine was from Boston Scientific out of California (but the surgeon was SD). They just run the 'wiring' up your spine a short way.

Thank you for your reply. I can't say that SCS has made my RLS worse but it certainly hasn't helped. I still think it has the capacity to help but they just need to figure out the right program and I don't know if they're even trying. Most people don't think RLS is a big deal. If they've even heard ...

I know. I've read about Dr. Ekbom. He was a smart man to have figured it out back then. Guess I'm not fond of that name either! Just doesn't sound 'mean' enough... How come all these modern day Dr's are so far behind Dr Ekbom? ; ) Thanks for your post. PS: The last few days have been so much better,...

Wow, you have been on so many meds! Most of the ones that you're on now, I'd never get here. It's a rural, sparely populated part of the US and the doctors here are very conservative with the medications they use. Since the government crack down on opioid use, most are afraid to prescribe them. Cann...

Thank you Beth for the nice long reply. I know you're right. I've never been satisfied with the care I received at Mayo. I've been there twice in the past 23 years (which isn't a lot, I know). The Dr. there seems to understand RLS but he's not a good listener, has a rather arrogant attitude and disa...

I wish sometimes that moving was an option but it's not. My husband and I ranch for a living, therefore we own land, have a daughter and son-in-law who work with us and honestly, I love where I live. I to have to drive 200 miles to see any neurologist but even then, it's hard to find one that knows ...

It's pretty much neutral. It stops certain kinds of back pain, mostly nerve, such as sciatica or neuropathy, but most of mine is probably arthritis and worn out discs. You're so right, I KNOW this has the potential to help me but no one will/can try so I'm frustrated. It's so hard to find anyone who...