Article in todays Guardian

[Chocolate123Lab]

theguardian.com/wellness/20...

I so appreciated reading this. It’s great to have something to pass on to others so they can understand what we’re going through!

[SueJohnson]

Great article! But why didn't she try gabapentin or pregabalin since her RLS is still not completely under control.

[Chocolate123Lab in reply to SueJohnson]

I really don't know. But I'm going to write to her and invite her into our group....

[SueJohnson in reply to Chocolate123Lab]

Great idea!

[Joolsg]

It's a great article with up to date medical advice on treatment from the top US experts!Let's hope some ignorant UK doctors read it and update their knowledge.

[nick-the-turk in reply to Joolsg]

joolsg you are absolutely right about ignorant UK GPS HAVING to update there knowledge on RLS

[Frustrated-RLS in reply to Joolsg]

I think it is a real miss that there wasn’t some kind of editor’s note giving the context that DAs are still the first recommended medication treatments under NHS guidelines (as this was a first person piece written by an American, the author wouldn’t have included this). Every time I look at the relevant page on the NHS web site I want to tear my hair out.

[Chocolate123Lab in reply to Frustrated-RLS]

Yes, I agree. I wanted to post something in the comments section...but it seems there are no longer, or very few, comments sections in the Guardian these days?

[Joolsg in reply to Frustrated-RLS]

The main priority of RLS-UK is to get NEW official NICE guidelines (not the weaker guidance that is there now). NICE take around 4 years to research and produce 'guidelines.'

My main fear/concern is that the few neurologists in the UK who we have to rely on to get iron infusions/gabapentinoids/ opioids are still wedded to Rotigitone. Very few are anti DA.

Only Dr Jose Thomas refuses to prescribe DAs.

I keep hearing patients reporting that top neurologists suggest Rotigitone after augmentation on Ropinirole/Pramipexole.

And European neurologists are STILL pro dopamine agonists and are critical of the new AASM guidance saying it was rushed through without 'evidence'.

In my view, the best evidence comes from listening to the people who have RLS.

I don't know a single person who hasn't escaped augmentation. I sometimes use my daughter's facebook page to join private FB groups. So many people boast that they're doing brilliantly on Pramipexole. 'It works for me'.

If you then follow their posts- within weeks or months they are back to report the drugs are no longer working. They've had to increase the dose...

Or they are sleeping fine on Pramipexole but can't sit still through a cinema film or air flight.

We know what that means.

Complete nightmare.

If NICE approaches these 'experts' we're completely doomed to another generation having to fight for best treatment.

[Dotmowatee]

I have emailed her to share my positive experience with an opioid. I don't know why she didn't at least try them!

[Chocolate123Lab in reply to Dotmowatee]

Brilliant! That’s so good of you to do that. I also contacted her on instagram and invited her to this forum - she’ll find lots of support and help.

[Tildabri]

Thanks for posting: I was just about to do so. Excellent and comprehensive account of our troubles!

[Simkin]

Tha nks for sending article.

[DreamerTED]

Thank you for sharing this article. It pretty well covers everything, doesn't it? Great article to share with friends who wonder what this RLS stuff is all about.

[pianoplayerPLMD]

It was great to see this: especially as we read the Guardian but couldn't find this article in it. I personally connect with so much of your experiences. Thanks for posting it.

[violetta254]

Why would this person NOT pursue opioids when they are so effective?