RLS OPIOID SURVEY USA

[Joolsg]

surveymonkey.com/r/RJBDLQ6

The US foundation is asking for RLSsufferers to complete a survey to show how opioids have helped your RLS. If you're on opioids & want to ensure access in the future, please complete, even though you're not a US resident. What happens there usually filters down to the rest of the world.

[Spurdog1]

happy to oblige

[Nettles68]

Done 😊

Hopefully this will help others suffering the horrors of augmentation, withdrawal and generally out of control RLS!

Thankyou Joolsg 😊

[yorkie24]

Done! Thank you for keeping us informed.

😊

[LanaCSR]

Awesome!! Hope this helps!

[sean01244]

I would do survey

[Arkangel]

I would be happy to do it, anything that might bring relief to sufferers.

[Shumbah]

I wonder if I could fill it in and put my doctors address in New york , Iam guessing otherwise I cannot.

Is the correct ?

[Joolsg in reply to Shumbah]

I'm in the UK and used my London address and put London as my US state. It worked.

[Newmomma567]

Yessss! I swear, opioids have saved my lifetime. Thank you so much for posting this.

[Jumpey]

Done.x

[Bumblebee88]

Done

[Shir_11]

Done. Thanks Joolsg

[Joolsg]

Thanks all for completing the survey. Even though most of us are not US citizens, our stories may help persuade US legislators that low dose opioids for RLS are life saving and don't lead to addiction. I dread to think what would happen if they started to ban opioids world wide for pain and RLS gets caught up in it.

[hausbauer]

Thank you. I will do it.

[RLSofManyYears]

Done!

[Toast5577]

Done! I do live in the US and I vote!

[Joolsg]

Thanks everyone. X

[martino]

Done

[Merny5]

I’m a US citizen taking opioids and have completed the survey. Thank you joolsg

[Joolsg in reply to Merny5]

Thanks Merny. 😊

[sudokufan]

I am prescribed codeine 2 x 15 mg at night when necessary but think this is more to do with back pain than my RLS, for which I take Pregabalin. I don't think the codeine has any affect whatever on RLS so think I'm maybe best not doing the survey?

[Joolsg in reply to sudokufan]

You're probably right. Codeine is the least effective opioid for RLS ,& at that dose I suspect it wouldn't have much effect on your RLS.

[sudokufan in reply to Joolsg]

Thanks for your confirmation of what I thought already - it's useful. During lockdown I tried repeatedly for a while to get help from my docs re RLS, was always told to fill in an eConsult, and was then prescribed so much codeine by various locums I think I could have poisoned the whole street! Apparently a "standard procedure" for some practices - codeine, DA's or nothing! Here endeth the rant! X

[Joolsg in reply to sudokufan]

So sorry to hear that. It's why educating doctors is vital. They don't know the basics, let alone best practice. Dopamine agonists are no longer first line treatment. Maybe send them all the latest research papers & the latest Mayo Clinic Algorithm?

[Covenant1962]

Completed and sent

[Hidden]

I've done the short survey.

[help3]

Opiodes helped my symptoms for years. Switched insurance. Which changed doctors which changed my meds been over 9 months and not been right since they changed my meds for my rls

[Joolsg]

You have to get off all dopamine agonists and find a doctor in the USA who is familiar with RLS. The US foundation has help groups so you could see if someone near you can recommend a specialist.Maybe your insurance would cover the new doctor. If you get effective treatment, the cost can actually reduce so your insurance company will be happier.