CDC reconsidering guidelines for opiate use. This affects RLS sufferers.

[WendyBea]

RLS.org is asking us to send comments to the Center for Disease Control about our use of opioids to treat our symptoms, as the CDC is reconsidering guidelines for their appropriate use and how they can be prescribed. Please don’t think this is only for Americans. ( See below.) My comment stated that, although I have tried many other medications, Pramipexole works best for me, but I do need to supplement with codeine daily. Without it, I don’t think I’m being overly dramatic in stating that I would not want to carry on. This syndrome has had a huge affect on my quality of life. While pramipexole did cause augmentation for me, it is still the best medication in my opinion for my particular case, and so I have been able to greatly reduce the dosage of it by adding regular codeine. My physician states that I can even afford to up my dose a bit, and she is a stickler for the wise use of any medication.

I’m not concerned about becoming addicted, but even if I did, at almost 80, and having suffered from RLS for forty years. I’m not too worried. Also, research shows RLS worsens with age, and I have found this to be true.Like many of you, I’m not an American citizen. However,I still feel we can add our comments and hope to influence their decision. You won’t be able to access their site by clicking on the photo below. Just Google RLS Foundation to proceed.

Thank you.

BTW, this organization offers a printable card to carry with you , which explains RLS in case you need to move in certain conditions, like on an airplane.

[TeddiJ]

Thank you, WendyBea! I added my comments about my journey just yesterday. I think there is a deadline, too. I thought it was March 31-hope I am wrong so many of you can add your 2 cents and ensure we never go through this lack of information and opioid hell again.We need all of the input, experiences, and RLS numbers we can get!

Thanks for including your info as it was also helpful for me to read, given all I have been dealing with lately. (Getting cut off from methadone by 2 docs, slogging through many doc appts and no help, resorting to Kratom, a day of vomiting 2 days ago after trying Buprenorphine in the middle of a desperate night, and now forced back to the DA's that I worked so hard to get off with the methadone.)

In my comments I wrote about the intense fear the doctors display due to the DEA (in the US) and the lack of recognition/physician education on the role opioids play for RLS sufferers (everywhere!).

I also wrote that it is usually lay people reviewing records for the DEA (one of my doctors told me this) and putting the fear of god into the doctors.

Most lay people have never even HEARD of RLS! So they put the kibosh on it and flag the doctors.

You would think medical professionals, if not actual doctors, would be doing the reviews. But no.

Thanks, again, WendyBea and All!

[WendyBea in reply to TeddiJ]

You're most welcome. I forgot about a deadline. Hope it wasn't yesterday! I only heard about it two days ago.

[Tanker1 in reply to TeddiJ]

Unless it changed the deadline was March 31. It can't hurt to try to supply comments anyway.

[WendyBea in reply to Tanker1]

That’s too bad, but thank you. As you say, it might not hurt to comment anyway.