Comments needed to Center for Disease Control

[Dougg]

Hi all.

I just received the following from RLS.ORG: "... a Call to Action that is due on Thursday, March 31. The Centers for Disease Control and Prevention (CDC) is revising its 2016 Opioid Prescribing Guidelines, and this is an opportunity for the RLS community to raise our voices about the appropriate use of opioids in the management of severe cases of RLS."

As I understand it, this is an opportunity to ask (beg?) the CDC to consider RLS in setting up its 2022 Opioid Prescribing Guidelines. Although the CDC is a US agency, it would not surprise me if other countries rely on these guidelines as well.

RLS.ORG has an easy-to-follow instruction page showing how to comment, and it also includes sample wording. That page is here: rlsfoundation.blogspot.com/...

Please take time to comment. In my experience, US federal agencies can be swayed by a preponderance of public comments.

Thanks.

[LotteM]

Good cause Dougg. Are 'we' from outside US allowed to react? Or will they dismiss our contributions?

Or should I ask Karla of rls.org. I am a member and shall certainly have a look and try to comment.

[Dougg in reply to LotteM]

Hi LotteM. It’s a great question, and I don’t know the answer. I’m guessing that Karla would know. I would like to think that a preponderance of responses based on facts would sway the CDC, regardless of the country of origin. Thanks for your help.

[Cocktails]

Have commented. My comment has been registered and we can track our comment via a tracking number. I guess that will tell us whether the comments from outside of the US are being dismissed. However, the form does allow to give name and country of origin, so it looks like all comments from everywhere can be submitted at least.

[Dougg in reply to Cocktails]

Thanks, Cocktails.

[SueJohnson]

Thank you. I submitted a comment. And I posted it to a US RLS forum I participate in.

[Dougg in reply to SueJohnson]

Thanks, Sue.

[Joolsg]

Happy to comment but they may ignore it as I'm here in the UK.Karla has sent an email to all rls.org members so that's great. We do have a lot of US people on this site as well so hopefully they'll write in.

[Joolsg]

I've just submitted comments and it allows comments from anyone, worldwide.

[Dougg in reply to Joolsg]

Thanks, Joolsg.

[Jerry57]

Submitted comment. Thanks for sharing this, Dougg.

[Dougg in reply to Jerry57]

Thanks!

[yorkie24]

Submitted a comment. I use codeine to control my RLS, successfully, so a cause close to my heart! Thank you for sharing.

[Slipslopslap in reply to yorkie24]

Could u please advise how much and how often r u taking codeine for your RLS symptoms.Do u take it at regular intervals OR only when your symptoms start?

I have been taking it for about 3 weeks for severe refractory RLS but find it doesn’t relieve symptoms for very long.

The chemist suggested I try taking paracetamol with it but I haven’t noticed any difference.

I am about to start very slowly weaning off my sifrol (.250mg) so I will need the codeine to help.

[yorkie24 in reply to Slipslopslap]

I take 30mg of Codeine at 1830 as this is the time of day when I am usually crafting or watching TV ie sitting still. I take another 60mg at bedtime. If I wake during the night I take another 30mg but often I will sleep through. If I am sitting on an afternoon and my RLS starts I take 30 mg but this does not happen very often. I also take Gabapentin, 300mg at 1930 and 300mg at 2130. Previous to taking Codeine I found that Gabapentin did not help my RLS at all but the two drugs do seem to work well together - for me, at least.

[Slipslopslap in reply to yorkie24]

Thanks so much Yorkie.

[Dougg in reply to Slipslopslap]

Hi Slipslopslap. To get more answers, you might want to post this as a separate thread question, since’s it’s showing up as a reply to a post about the CDC.

[Slipslopslap in reply to Dougg]

Thanks Doug, it will do a separate post.I find it hard to navigate through all the info here on this forum.

[AnnMB in reply to Slipslopslap]

My Dr had me on opioids for severe restless legs and they helped UNTIL she decided she didn’t want to give them anymore and I was left with an awful addiction with no help or support. I never did anything wrong in taking them, followed fully the Drs recommendations. So sorry but I don’t recommend the use of opioids.

[Dougg in reply to AnnMB]

I’m so sorry, AnnMB. That’s a horrible thing for a doctor to do.

[Dougg in reply to yorkie24]

Thanks, Yorkie24. Opioids are sure a life-saver for many of us with RLS.

[Merny5]

I have submitted my comment. Thank you Dougg for sharing this information with the group!

[Dougg in reply to Merny5]

Thanks, Merny5!

[antelope99]

I have made a comment, fingers crossed for their help.Thanks Dougg

[Dougg in reply to antelope99]

Thanks!

[RKM7]

I have submitted my comments too! Thanks Dougg for posting this!

[Dougg in reply to RKM7]

Thanks, RKM7!

[Annty]

Thanks for this.Have commented(I'm in U.K snd it went through OK) Fingers crossed.

[Dougg in reply to Annty]

Thanks, Annty.

[LotteM]

Done

[Dougg in reply to LotteM]

Thanks, LotteM!