RLS OPIOID SURVEY USA : surveymonkey... - Restless Legs Syn...

Restless Legs Syndrome

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RLS OPIOID SURVEY USA

Joolsg profile image
28 Replies

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.

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Joolsg profile image
Joolsg
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28 Replies
Spurdog1 profile image
Spurdog1

happy to oblige

Nettles68 profile image
Nettles68

Done 😊

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

Thankyou Joolsg 😊

yorkie24 profile image
yorkie24

Done! Thank you for keeping us informed.

😊

LanaCSR profile image
LanaCSR

Awesome!! Hope this helps!

sean01244 profile image
sean01244

I would do survey

Arkangel profile image
Arkangel

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

Shumbah profile image
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 profile image
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 profile image
Newmomma567

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

Jumpey profile image
Jumpey

Done.x

Bumblebee88 profile image
Bumblebee88

Done

Shir_11 profile image
Shir_11

Done. Thanks Joolsg

Joolsg profile image
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 profile image
hausbauer

Thank you. I will do it.

RLSofManyYears profile image
RLSofManyYears

Done!

Toast5577 profile image
Toast5577

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

Joolsg profile image
Joolsg

Thanks everyone. X

martino profile image
martino

Done

Merny5 profile image
Merny5

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

Joolsg profile image
Joolsg in reply to Merny5

Thanks Merny. 😊

sudokufan profile image
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 profile image
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 profile image
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 profile image
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 profile image
Covenant1962

Completed and sent

I've done the short survey.

help3 profile image
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 profile image
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.

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