Calling All USA Suffers This is Your Chance to Help Us All!

[Not-methadone-addict]

Hi,

I know there are a number of people on here from the US and there is some very important legislation about to be made that could affect us all or at the very least those of us with Refractory RLS where nothing BUT opioids will help. Or even if this isn’t you and you know a fellow sufferer like this please help! I know those of you who are members of the Restless Legs Syndrome Foundation already know this and have gone to comment but there are always brand new diagnoses every day so just putting it out there for nonmembers or those newly diagnosed (who are probably already so overwhelmed 😞 sorry) or maybe members who haven’t seen it. I should have done this a long time ago or maybe somebody did and I missed it. Sorry about either. Anyway here is a link to the blog post from the Restless Legs Syndrome Foundation page with all the info on it rlsfoundation.blogspot.com/...

Thanks for listening,

Sus

[DicCarlson]

Well that wasn't easy! At the bottom of the introduction is a small link "Step #1..." You need to click on that to get started. Then you need to disable browser extensions like gramerly and adblocker to proceed.

[Not-methadone-addict in reply to DicCarlson]

Hi Dic!

Yike! I should be yelling at myself right now. I have the browser page open but still need to actually type up something. Thank you for stepping up. You’re awesome! I of course do feel very strongly about this because so far in my over 22 years (probably more because I suffered as a kid but didn’t know what it was) nothing has worked but opioids and with my new doctor I’m hoping soon to be back on methadone that I’ve had awesome affects from. Hope more see and take the trouble.

Sus

[Hoffie]

I filled out the online forms, I hope this helps all of us.

[Not-methadone-addict in reply to Hoffie]

Hi Hoffie!

Thank you for doing that. I think everyone knows we have to be our own advocates in this case especially since most people don’t even know about RLS much less that opioids in very low doses are our lifeline. I should have posted earlier. Shame on me and I’m sorry.

Sus

[rls_optimist]

Thanks for posting this - it is indeed very important for those of us in the USA to make our voices heard, so that we don't have our access to the very helpful opioid medications taken away from us.

I added my comments just yesterday. I didn't run into any problems, and didn't have to disable any extensions.

[Not-methadone-addict in reply to rls_optimist]

Thank you!

I know you did it for you but in helping ourselves we can hopefully help others at the same time. This become a VERY important issue for me because I have everything pinned on this. I did this 13 years ago and now again and same result. Nothing else works and for the people who want to shame us for taking these terrible drugs I say shame on them for not doing their homework and for being judgmental. This disease is a different road for everyone so I guess if you can’t be supportive of others just stay on your own road. Those of us who need these meds, let’s hope with all our might the legislature takes us in mind as well.

Sus

[Dougg]

I tried loading the first step, and my browser stuck in what appeared to be a never-ending loop on a page that said "Loading". I tried two different browsers, both with the same result. Did anyone else experience this?

My hope is that the problem is due to millions of people commenting and thus overloading the servers.

Thanks.

Doug

[Not-methadone-addict in reply to Dougg]

Hi Doug!

Wouldn’t that be awesome! Especially if it were all restless legs peeps. I have seen some that were right there on the first page. Hey Doug you may have already but try the link at the bottom of my message and then push the blue comment now button at the top of the column on the right side of the page. If that doesn’t help you may have to contact them. Here’s the number Help Desk at 1-877-378-5457.

regulations.gov/document?D=...

Let us know how it went!

Sus

[Dougg in reply to Not-methadone-addict]

Thanks! Now I seem to be able to get in without any delay. Must have been sunspots, electromagnetic asteroid activity, or too many people in my neck of the woods watching cable reruns of The Simpsons...

Good to go.

Doug

[Hidden]

Hi

I'm not from the US and I don't use opiates for my RLS, but I couldn't help getting interested in this.

Having followed the link I see that as yet, there seems to be no legislation planned to prevent RLS sufferers gaining access to opiates, it just seems to be under review.

In a positive light, it does seem as if you're being given the opportunity to offer your views on this and if I was in your shoes, I would do that.

There is believe a similar review of opiates for "non cancer conditions" taking place in the UK. It may be that I've missed it, but I'm not aware of any opportunity for UK sufferers to feedback their comments about using opiates for refractory RLS.

[Not-methadone-addict in reply to Hidden]

Amen sister! Things always go to crime or underground if prohibited so yeah you’d think they’d learn but so far that is NOT been my experience. You cannot get any doctor to prescribe pain medications. My doctor even went so far as to suggest marijuana instead but of course they themselves at least her practice group are forbidden, and I mean that, from filling out the physician part of the paperwork you need to fill out in our state, at least for medical marijuana because though all marijuana is now legal no one is set up to do this and they have no regulations in place even though they knew this was coming.

Sus

[Hidden in reply to Not-methadone-addict]

You read my post before I changed it, which was after I followed the link. For the benefit of others I referred to lessons from history and "prohibition".

I have no vested interest in opiates one way or the other. Currently I have no need. If I ever did then I hope they would be available.

It seems as if things bounce from one extreme to another, from over-prescription to over-restrictive prescription.

I hope a medium can be found.

I'm a brother!

[Not-methadone-addict in reply to Hidden]

OMG BROTHER!

I’m so sorry about that. That’s what ya get sometimes for making assumptions. Thank you for correcting me. I’m so embarrassed.

Anyway yeah it has gone from one extreme to another. At one time pain was considered the fifth vital sign and we HAD to make sure there wasn’t any pain. It was insane. Of course Pharma gets involved and makes all these promises and puts a little money in this pocket and that pocket and all is good. Then the opioid crisis hits and all hell breaks loose. Panic time. No opioids can be prescribed. People who were on them for chronic pain have them promptly taken away. Suicide rates are going up with them and RLS patients and more. Ugly thing.

Sorry again brother

Sus

[Hidden in reply to Not-methadone-addict]

No problem about the gender confusion. People are familiar with the name Minerva who was the Roman goddESS of wisdom. I have been actually addressed as that once or twice. (Minerva that is, not goddess!)

I'm not a min, I'm a man and I have bad nerves, hence man nerva.

[Not-methadone-addict in reply to Hidden]

Hi,

I neglected to tell you how much I like your chosen handle. Do they say that anymore? Back in the day there were CBs for the truckers, well here in the US anyway. Unfortunately I don’t know about the UK, which is kinda pathetic really. I’m trying to broaden my horizons, although my parents always encouraged this so I have but as to some of the nitty gritty details I’m pretty much useless 🤓. At least they are broader than our current resident in that White building with the horrible dye job. Does that avoid anything political 🥺? I hope everyone in other countries knows most of us do not in any way share any of his views.

Anyway, I totally agree with you that given the chance we (in the US) with RLS regardless to how bad it is or isn’t should voice support for opioids to continue to be used at low doses for those of us that need it. You never know when it might become something that affects you. RLS is known to increase in severity as you get older. Anyway time for me to go before I get in trouble 🙃.

[Hidden in reply to Not-methadone-addict]

I'm sort of embarassed you said you lkke my handle. Nobody's said that to me before

Yes it was "handle" in the UK too.

No comment on politics, I believe you can buy some very good wigs in the US