Advocacy

For everything and anything else not covered in the other RLS/WED sections.
Rlstader
Posts: 10
Joined: Fri May 27, 2016 3:18 am

Advocacy

Postby Rlstader » Fri Apr 21, 2017 4:26 pm

I just left Congressman Pat Tiberi’s office. I went with a personal letter explaining my experience with Restless Leg Syndrome (RLS) and the RLS medical bulletin that I printed from the RLS.org website. I was able to speak with one of the Congressman’s representatives and explain my concerns about prohibiting physicians from prescribing opiates to those of us with severe RLS.

It was a very easy, pleasant visit. The Congressman’s representative said the Congressman is very busy but that he would arrange a meeting if I wanted. I felt like I was being heard, cared about and taken seriously. I will update this blog after the meeting takes place. Next week I will be going to my Governor’s office. For anyone in Ohio please help me because our legislators are trying to prohibit physicians from prescribing opiates except for a very limited group of diseases/conditions and RLS is NOT one of them.

I plead with everyone who reads this to contact their legislators to educate them about our disease. Everyone with RLS, regardless of whether or not you take opiates, needs to lobby our legislators.

Even though you do not take opiates now, you may need them someday. I was able to treat my RLS for over ten years before I exhausted all other options and was prescribed opiates – they work 90% of the time and I can live with that.

ViewsAskew
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Posts: 14857
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Advocacy

Postby ViewsAskew » Fri Apr 21, 2017 6:27 pm

Thank you!!!! You are so right - we all need to advocate as best we can.
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.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Advocacy

Postby Polar Bear » Sat Apr 22, 2017 6:19 pm

Well done :thumbup:
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

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Advocacy

Postby badnights » Tue Apr 25, 2017 7:02 am

Rlstader - thank you! I hope others have the bravery to take that step as well. It is merely ignorance that leaves WED/RLS off the list, and you're taking steps to remove that ignorance. Thank you!
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

leggo_my_legs
Posts: 257
Joined: Sun Oct 16, 2016 12:29 am

Re: Advocacy

Postby leggo_my_legs » Thu Apr 27, 2017 5:19 am

rlstader,

I'm so glad you did that! This is something that I feel strongly about as well. I suspect all states are in similar danger. I'm glad you met with your rep! Even better that you felt cared about.

Opioids are an important quality of life issue for people with disabilities and pain concerns. That's how I feel about my prescription, that it increases my quality of life. That's the difference between an addiction patient and a pain patient--the drugs make the addict's life worse, but the drugs make the pain patient's life better.

I filled out the rls survey regarding opioid users for the rls foundation.

I am increasingly more and more disturbed about the direction that medicine is going in the USA. I just bought a cpap machine for the insurance negotiated capped rate of $425 or so. The private pay price is $3,200. Something is very wrong with this. I get so livid about it.

The effective way to fight addiction is through education and strong communities for our children, not restricted access. What kind of country do we live in that adults can't be trusted by the govt to self-monitor and are infantilized instead?

Oooooo don't get me started! :roll: :oops:

Kudos to you. If they restrict use further, hopefully a group will bring suit under the ADA or some other law. But lawsuits take forever, so that doesn't really help, even if they did win.

Gaelyl
Posts: 7
Joined: Mon Apr 17, 2017 11:17 pm

Re: Advocacy

Postby Gaelyl » Fri Oct 13, 2017 3:17 am

Advocacy. I have just taken to it on the local area (Metro Detroit) because I have been stigmatized by doctors in ER's at times when I come in for an acute respiratory problem. The time before last that I had to go to the ER at local hospital for a respiratory issue, the doctor walked in and said "Hi. I am Dr. So-so and why are you on methadone?" I say "RLS" and he says he has to check his computer and then comes back and said "sorry, guess you were telling me the truth>" ARRRGGG! And then 2 weeks ago, again, into ER for breathing issues and the doctor who was a teaching doc, challenged me in front of 8 students, that methadone was not used with rls, so something else going on because there are other meds for rls like Requip. I agreed and started explaining on requip I suffered augmentation, making the rls much worse & finally what worked for me was a baby dose of methadone. His reply was to the students, was obviously, I was a patient who knew more than her doctor & time to leave my room. And he rescinded the methadone order for med and put me on requip. Sadly, among the medical profession I have found maybe 50% know methadone can be used w/rls. So I have started my own "try to educate " the doctors I meet who do not know methadone can be used with rlls. I keep xerox copies of the web page on the rls site that describes rls and the second page , the medications and treatments that are used. Not a huge dent in education of some docs but at least something I can hand them to read when the methadone/rls issue arises. And I will cast out the net farther and farther.

ViewsAskew
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Posts: 14857
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Advocacy

Postby ViewsAskew » Fri Oct 13, 2017 4:48 am

So sorry you had that happen. And, so glad you are up to the fight and thank you for advocating on behalf of all of us.
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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