PLMD

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
badnights
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Re: PLMD

Post by badnights »

Kimberley that's horrible, how have you managed to cope? God I wish I could take it all away. I am not surprised by your comment on quantity of life, unfortunately; I think it's clear that chronic sleep loss causes earlier death. When you posted before, you hadn't tried opiods yet, had you? Or have you, I forget. Which medication is making you foggy, are you taking a sleep med as well as RLS/WED meds?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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Kimberly
Posts: 79
Joined: Wed Jul 20, 2005 3:06 am
Location: Columbus, Ohio

Re: PLMD

Post by Kimberly »

badnights wrote:Kimberley that's horrible, how have you managed to cope? God I wish I could take it all away. I am not surprised by your comment on quantity of life, unfortunately; I think it's clear that chronic sleep loss causes earlier death. When you posted before, you hadn't tried opiods yet, had you? Or have you, I forget. Which medication is making you foggy, are you taking a sleep med as well as RLS/WED meds?


Thank for you kind thoughts. I don't really know how I'm managing to cope, except to say that I keep my 'world' very small (family only), my life very simple, no drama, as stress free as possible, and do only what I can when I can. As I am a type A personality, this is easier said than done. My brain and body refuse to be on the same page and in my mind I forget sometimes that I can no longer live as I use to. I would not be able to do this if I had to work, but I was awarded SSD in 2007. Having been divorced, worked full time and raised my sons alone for the past 25 years, I am accustomed to juggling many things at once, being totally organized and in control. I am still learning that kind of life is no longer possible. Most days just roll one into another and I truly understand what it means to not know if I'm 'coming or going'. Fortunately, I have 3 absolutely wonderful, now young-adult sons who would do absolutely anything to support me.

Over the years I've been to University Hospitals in Cleveland, Cleveland Clinic, Medical College of Ohio, Ohio State University and been a patient of a doctor who's on the Board of the National Sleep Foundation. It seems I have tried everything and combinations of everything, including opioids: percocet, vicodin, hydrocodone, and methadone. The later nearly sent me to the ER. All ease the pain of Fibromyalgia, but not much more so than a couple of advil and unlike advil, all of them make me feel drugged in addition to doing absolutely nothing to prevent/stop the PLMW tics. At this point, the most success I've had was a combo of mirapex and neurontin, but the improvement wasn't much and I developed most all the severe side affects associated with mirapex and had to quit. I also have the complications of needing anti-depression med, which exacerbates movement, so I use as little Wellbutrin as possible. I've been taking xanax just to keep me from going insane all night long, but today the doc decided he wants me to try Rozerem, which is like indicated for insomnia. I think he's out of options and just trying to appease me, bless his heart. I trust him, but I don't have insomnia. If someone would just discover something that would prevent/stop the movement, I'd sleep just fine! Brain surgery has occurred to me. Seriously. If they can use implants to stop Tourettes movement, who knows? I wonder if anyone's tried it?

cornelia

Re: PLMD

Post by cornelia »

Gosh Kimberley, I remember you well. Especially the bit about your sons being so loving to their mum. How this desease has progressed in just a couple of years!

About your medications: have you ever tried switching every other day an opiate with a DA? It works for some of. The idea behind it is to keep tolerance as far away as possible by taking mini drug holidays all the time.

Surgery for RLS will not happen in the near future the experts say. As soon as this treatment becomes available I certainly will try it too. It is such a shame that there is still no better life for the very severe patients.

Wish you all the best you can get
Corrie

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