Opioid Survey - Please participate

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
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Opioid Survey - Please participate

Postby Rustsmith » Sat Apr 01, 2017 7:43 pm

The latest issue of Nightwalkers is in the mail and available online for Foundation members. This issue is primarily devoted to the issue of maintaining access to opioids and trying to counter regulations that limit that access.

One of the steps that the Foundation is taking in this area is the collection of stories from RLS patients who depend upon opioid medications. To do this, they have created an online link at https://www.surveymonkey.com/r/OpioidAdvocacy.

The web page has boxes to enter your name and contact information as well as a box to write your story. The story that I submitted ran to 1.5 pages, so if there is a size limit, it is large. The only guidance provided about what to include was:

Send us your RLS story. If you use opioid therapy to manage your RLS, send us your story about living with RLS and how the use of opioids has impacted your life. Please include permission to share your story on behalf of the RLS Foundation’s advocacy efforts.


So, if you are using any form of opioid medication to manage your RLS, please participate. As a different article in this issue pointed out, numbers count when it comes to influencing government regulators, so please "Vote".
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Opioid Survey - Please participate

Postby leggo_my_legs » Sun Apr 02, 2017 7:21 am

Done! Thank you for the info.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Opioid Survey - Please participate

Postby Yankiwi » Mon Apr 03, 2017 5:23 am

I'm not in the US or I'd have done the survey.

badnights
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Location: Northwest Territories, Canada

Re: Opioid Survey - Please participate

Postby badnights » Thu Apr 06, 2017 8:58 am

Do it anyway. There's nothing that says you have to be in the US. Why shouldn't the experiences of people in other countries affect US policy?

I haven't filled it out, but not because I'm not in the US. Only because I am generally either at work or useless. Often, both. (Thank you WED.) But I've had it open on another tab for a few days now...

How can I even begin to tell that story?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Alan
Posts: 23
Joined: Thu Nov 15, 2007 1:29 pm

Re: Opioid Survey - Please participate

Postby Alan » Sun Apr 09, 2017 12:32 am

hi--Tried to go to survey monkey but link in Night Walker did not work. So I went on the gen info email address to tell "my opioid story", asking them to refer it to Ms. Dzienkoowski. Didnt know if there were any other options. Has the survey been taken down? I got message that no such survey existed using the link in Night Walkers (date April 7).

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Opioid Survey - Please participate

Postby Rustsmith » Sun Apr 09, 2017 2:36 am

hi--Tried to go to survey monkey but link in Night Walker did not work. So I went on the gen info email address to tell "my opioid story", asking them to refer it to Ms. Dzienkoowski. Didnt know if there were any other options. Has the survey been taken down? I got message that no such survey existed using the link in Night Walkers (date April 7).


Alan, try the link in the first message of this page. I just tried it and it worked.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
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Location: N. Ireland

Re: Opioid Survey - Please participate

Postby Polar Bear » Mon Apr 10, 2017 9:29 am

Done - although I'm not in the US.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
Posts: 255
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Opioid Survey - Please participate

Postby Yankiwi » Tue Apr 11, 2017 3:44 am

I did it too although it isn't really a survey, just one question where the answer can be as long as necessary .

charles
Posts: 11
Joined: Wed May 09, 2012 2:58 pm

Re: Opioid Survey - Please participate

Postby charles » Sat Apr 15, 2017 3:44 pm

I posted my story last week on surveymonkey, however, I did not feel quite sure it went through. Can you verify if it was received ? Also, I registered for the 4-19 webinar. I want to be part of the effort directed at the NIH. It's evident that whoever made the decision to exclude RLS from opioid therapy does not have RLS, or is not close to someone who has RLS. RLS is an easy target for Gov't folks who know little, but can show false results by not giving RLS the respect it deserves.
Thanks
Charles

charles
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Joined: Wed May 09, 2012 2:58 pm

Re: Opioid Survey - Please participate

Postby charles » Sat Apr 15, 2017 3:51 pm

PS........I will also make a $$$$$$ donation to assist in the foundations effort directed at the NIH. I'm not wealthy, however, I will give within my means.
Charles

Rustsmith
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Re: Opioid Survey - Please participate

Postby Rustsmith » Sat Apr 15, 2017 4:54 pm

Charles, with this being a holiday weekend, we won't have any way to check until the Foundation staff return to the office next week. I will try to remember to follow up with them then.

As for NIH, they have been rather supportive of research into issues with RLS in the past. The problem with opiates is within both DEA and CDC. Both of those agencies are fixated on reducing deaths due to opioid and illegal drug overdoses. In my opinion, they are no different from many other government regulatory bodies who have taken the easy route toward their goal rather than really working to address the issues. In their minds, if opioids were not "readily" available then the number of deaths due to abuse would go down. In doing this, the either fail to, or don't care about, those of us who have chronic issues and depend upon these medications in order to lead a semblance of a normal life. It is for this reason that the Foundation needs our stories so that the can "educate" these short sighted regulators.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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Location: Northwest Territories, Canada

Re: Opioid Survey - Please participate

Postby badnights » Sat Apr 15, 2017 10:59 pm

Charles, as Steve alluded to, we Board moderators aren't Foundation staff, we're just volunteer members. The Foundation has a general email address, info@rls.org, and the few people who work there are super-nice.

Thanks for doing the survey. I wish I would get over my anxiety about accurately portraying things and just write something.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Posts: 14645
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Location: Chicago

Re: Opioid Survey - Please participate

Postby ViewsAskew » Sun Apr 16, 2017 5:17 am

I just did stream of consciousness, Beth, and hit submit.
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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Posts: 4370
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Opioid Survey - Please participate

Postby badnights » Tue Apr 18, 2017 6:38 am

I did it. It was hard to stay on topic. My mental faculties are sub-par these days....
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
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Posts: 14645
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Opioid Survey - Please participate

Postby ViewsAskew » Fri Apr 21, 2017 2:47 am

badnights wrote:I did it. It was hard to stay on topic. My mental faculties are sub-par these days....


I wish I had no idea of what you speak...
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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