So glad for our advocates

For everything and anything else not covered in the other WED/RLS sections.
ViewsAskew
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So glad for our advocates

Postby ViewsAskew » Fri Apr 05, 2019 6:36 am

Articles about opioids that target physicians and teach about RLS and opioids. First one is about Winkleman and his advocacy of opioids! http://www.sleepreviewmag.com/2019/03/o ... f=cl-title Second one is about using opioids for refractory RLS (Silber). http://www.sleepreviewmag.com/2019/02/o ... f=cl-title
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Re: So glad for our advocates

Postby Polar Bear » Fri Apr 05, 2019 4:45 pm

It is heartening to know that research into the use of opioids continues. Thank you John Winkleman.
Betty
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badnights
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Re: So glad for our advocates

Postby badnights » Mon Apr 08, 2019 6:26 am

I thought I had a good grip on myself but clearly I still indulge in self-pity. I cried out loud twice as I was reading Winkleman's interview, both places where he refers to damage from augmentation:
Physicians who don’t recognize the phenomenon of augmentation continue to increase the dopamine agonist doses for patients whose symptoms worsen, unknowingly causing potentially permanent damage. “My experience is that some degree of augmentation is reversible, but for many people it is not,”

and
“I’ve been through this once with the dopamine agonists, doing what I thought was best for my patients, and what was expert standard of care. But it turned out not to have been a good thing,” he says. “A lot of people did get tremendous relief from the dopamine agonists, but we did not anticipate that in the longer term it would make their RLS worse.


I try to avoid thinking "what if" but this caught me with my pants down.
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: So glad for our advocates

Postby ViewsAskew » Mon Apr 08, 2019 9:33 pm

badnights wrote:I thought I had a good grip on myself but clearly I still indulge in self-pity. I cried out loud twice as I was reading Winkleman's interview, both places where he refers to damage from augmentation:
Physicians who don’t recognize the phenomenon of augmentation continue to increase the dopamine agonist doses for patients whose symptoms worsen, unknowingly causing potentially permanent damage. “My experience is that some degree of augmentation is reversible, but for many people it is not,”

and
“I’ve been through this once with the dopamine agonists, doing what I thought was best for my patients, and what was expert standard of care. But it turned out not to have been a good thing,” he says. “A lot of people did get tremendous relief from the dopamine agonists, but we did not anticipate that in the longer term it would make their RLS worse.


I try to avoid thinking "what if" but this caught me with my pants down.


Virtual hugs to you. But, wasn't it nice to have him say that????? For years, almost no one has said that what happened to us can happen. That it CAN be permanently worse. That it is progression. Him saying that it wasn't? That was huge to me.

And, as usual, I can almost always count on seeing things similarly to you. I had a similar reaction.

I was out hiking this weekend with a long-time friend. We used to work together in the 90s, then we both moved and lost regular touch. We now, happily for me, live about 40 miles away, so we can get together more often. We were hiking around Diamond Valley Lake in Hemet, CA on a tour of the spring wildflower phenomenon that happens after a rainy winter (truly remarkable, I must say) and then we took the tram a Palm Springs - you start just above the desert at about 2000 ft above sea level and end, 10 min later, at 8500 ft. OK, too much of a lead in off topic, lol.

At any rate, we were talking about yoga and meditating and I mentioned that recently in yoga, the same topic keeps coming up.That I haven't forgiven my body for doing this to me and derailing SO many things I want/like to do as well as preventing me from contributing to the world the way I want to; that no matter HOW many times I think I have a grip on this, something arises that shows me I still have work to do; that I rarely do it, but sometimes STILL go back to wondering what if I had NOT gone to that damn doctor in 2003; that I still dream of something that brings such a fundamental change that I CAN do some of those things I want; and both how damn lucky I am to have my husband, as well as how much angst I have that I cannot support myself and that he is trapped (yes, I realize it is his choice - this isn't logical) in our relationship having to support me financially.

As I talked about it, I realized it isn't the same anymore. I have grown, processed, and look at it differently. Yes, it comes back up, but maybe it is like meditation - you always have to remind yourself to bring your focus back - and maybe regret and loss and all the things we feel are similar. We work on them and as long as we are in a part of our life where it impacts us, we are bound to come back to it.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: So glad for our advocates

Postby badnights » Tue Apr 09, 2019 4:46 am

I loved the lead-in :)

I think you're right - it's like meditation, we have to remind ourselves to re-focus. And just like in meditation, we mustn't get upset with ourselves for having to. I like that way of looking at it. It doesn't mean I've failed because I still bemoan my fate - I am succeeding because I do it less often.

Thanks for that thought :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: So glad for our advocates

Postby ViewsAskew » Tue Apr 09, 2019 8:55 pm

badnights wrote:I loved the lead-in :)

I think you're right - it's like meditation, we have to remind ourselves to re-focus. And just like in meditation, we mustn't get upset with ourselves for having to. I like that way of looking at it. It doesn't mean I've failed because I still bemoan my fate - I am succeeding because I do it less often.

Thanks for that thought :)


Nice summary :-).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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