Hi all

[Glenr78]

Morning everyone well I finally got a doctor to actually listen to my symptoms and after a full examination off knees and elbows he said I've got restless leg syndrome only took 23 years not bad lol my doctor prescribed ropinirole i asked about any other medication he said thsts the best.

[Madlegs1]

He's still 23 years behind the curve.🥵

I'm sure you know not to touch Rop or any suchlike.

Did he offer iron blood panel, check triggering medication or even warn you about augmentation if taking the Rop?

Do read any of Sue Johnson's replies to many posts.

Good luck.

[Glenr78 in reply to Madlegs1]

Hi thanks for the reply yes sue has replied the other day regarding the tablets I asked my doctor he said that's best and that's all he can do but I've rang around all the chemist in my area and no one has any that's just my luck back to square one

[SueJohnson in reply to Glenr78]

Change doctors or ask for a referral to a neurologist. Above all DO NOT TAKE ROPINIROLE. Read up on this forum on the people who have said it destroyed their life.

[Glenr78 in reply to SueJohnson]

Hi Sue thanks for the replyI think that's all I've done since I found this forum I'll ask to see another doctor but I'm looking at a month for an appointment

[SueJohnson in reply to Glenr78]

Or in the meanwhile print out the portions of the Mayo Clinic Updated Algorithm on RLS that discusses ropinirole and gabapentin to show him in hopes of changing his mind while you go ahead with getting an appointment with another doctor.

Where do you live? Perhaps we can steer you to a doctor that knows more as opposed to you going to one that will just try to prescribe ropinirole or pramipexole.

[Glenr78 in reply to SueJohnson]

I did mention the mayo thing and he said he was thinking the same but still prescribe them anyway

[SueJohnson in reply to Glenr78]

And I don't suppose you could say you are not going to take ropinirole and insist on being prescribed gabapentin or pregabalin and he would listen..

[Glenr78 in reply to SueJohnson]

I'm already on gabapentin for my arthritis and co.dydramol for my back

[SueJohnson in reply to Glenr78]

That's right - I forgot. Did you try switching to 600 mg like I suggested?

[Glenr78 in reply to SueJohnson]

I did try but still the same problems

[SueJohnson in reply to Glenr78]

Darn! You definitely need a stronger opioid like buprenorphine. Hopefully when you find another doctor he will prescribe it.

[Glenr78 in reply to SueJohnson]

I'll keep this all in mind for when I see him thank you sue you've all been so much help

[SueJohnson in reply to Glenr78]

Who is your doctor so we can add him to our list of doctors to stear people away from?

[Glenr78 in reply to SueJohnson]

Dr Robert Bennett, he's the only one that listend in the surgery the other one said the pain I was suffering from was addiction to the painkillers

[SueJohnson in reply to Glenr78]

Where is he located - ie what city as in looking I have found several doctors of the same name?

[Glenr78 in reply to SueJohnson]

Blackpool Lancashire

[SueJohnson in reply to Glenr78]

I have two suggestions for doctors for you: Sheffield Adult Neurological Sleep Service located in Sheffield - specializes in RLS. It's an NHS hospital sth.nhs.uk/neurosciences/ne... there are two forum members associated with it. You can message them if you want Munroist and pennygates.

Salford Royal (near Manchester) - Ced60 paid privately and saw Dr Christopher Murphy - Consultant Neurologist circlehealthgroup.co.uk/con... It doesn't look like it is covered by the NHS .

[Glenr78 in reply to SueJohnson]

That's great Salford's not that far from me I'll look into that

[ChrisColumbus in reply to SueJohnson]

SueJohnson is there any point in taking it for 2-3 nights to try to confirm or deny a diagnosis of RLS? Or would you advise against this? I know that if it works the temptation is to keep taking it, but Glen has been warned...

[Madlegs1 in reply to ChrisColumbus]

Good point. If the local chemists don't have any Rop ,( I wonder why not?) Then Mirapex might be available.???

However-- we are not medically qualified to make such suggestions - even if we seem to know more than the so called medically qualified.

Makes one wonder!🤔

[ChrisColumbus in reply to Madlegs1]

Of course we're not 'medically qualified' to suggest *anything* either for or against 😕... we can only advise what our own experience, or other people's reported experience, or what expert testimony, tells us,

[Madlegs1 in reply to ChrisColumbus]

Oh dear! I certainly didn't mean to cast any nasturtiums upon you , Chris.

It was meant for me.

It was meant as a catchall defence for all of us on the site.

Sometimes we veer very close to deterministic opinions - especially myself 🫣

My eternal apologies.

[ChrisColumbus in reply to Madlegs1]

No, don't get me wrong - I wasn't in any way wading crossly through nasturtiums, just expanding on what you wrote. Absolutely no apologies, genuflections or prostration necessary! 🙃

[Madlegs1 in reply to ChrisColumbus]

🤠

[SueJohnson in reply to ChrisColumbus]

I would agree if there were any question but he said he met the 5 criteria so I don't think there is any point. If it takes a month to see a new doctor he would be very tempted to take it for that time. as anyone would, even I.

[ChrisColumbus in reply to SueJohnson]

Reminds me to check in on the person in Sweden who was going to try a short trial of prami/Sifrol.....

[Glenr78]

Hi thanks for all the input I've managed to get hold off sum well later on,I'm really struggling I've also got arthritis in most off my body so that doesn't help I really don't know what to do for the best🤔

[Nikos64]

please don’t go on ropinirole. It will worsen your rls. Plus when you eventually need to get off of it you will go thru hell ! I was on ropinirole then pramipexole for 2 years and I went thru hell with this class of drugs. Everyone reacts to drugs differently and you may have better luck than I but the odds I think are against it

It used to be front line treatment but now RLS experts like pulmonologists / sleep specialist start RLS sufferers with gabapentin.

My advice is to find a sleep specialist that is up to date with the latest treatment regimes

I also highly recommend Sue Johnson’s posts. She knows her stuff and has excellent advice !

I don’t want to repeat her advice .. just reinforce it as a lifelong RLS sufferer.

I really wish you find restful sleep !

[Glenr78 in reply to Nikos64]

Hi thanks for the input I'm taking all this on board I really am but I've been suffering since I was 17 I'm now nearly 46 and even tho I've been taking gabapentin and co.dydramol but even with that I'm still up every night in pain, I'm not going to lie but I did take my 1st tablet last night and I fell asleep no pain till half 3 this morning then my knees started it feels like I'm stuck behind a rock and a hard place

[Nikos64 in reply to Glenr78]

Co dydramol contains codeine which is a weak opioid and is not as effective as a stronger opioid for RLS. The other problem with this medication is that it has acetaminophen in it which does nothing for your condition and is probably not good for your liver long term. If I were in your predicament I too would take co dydramol but please see a specialist so you do not have to rely on this medication.

You’re fortunate you can get codeine over the counter in the UK and it’s great for the occasional backache or fever aches but for RLS it’s not an ideal medication

[Glenr78 in reply to Nikos64]

Thank you I am trying to come off them I'm on ropinirole now and it seems to be helping still wake up at 3am in pain then that's me till nighttime again but at least I'm sleeping a little bit

[Sleeplesniights]

do not take any of these drugs they are dangerous

I have restless leg syndrome and went through hell till I found CBD oil I take a few drops in a cup of tea before I go to bed and it works for me

It’s worth a try

[Glenr78 in reply to Sleeplesniights]

Thank you I'll definitely be trying that I'll shall let you know 🙏

[Sleeplesniights in reply to Glenr78]

Are you in the uk

[Glenr78 in reply to Sleeplesniights]

Yes sunny Blackpool

[VJ29 in reply to Sleeplesniights]

Could I ask which CBD oil you take please.

[Sleeplesniights in reply to VJ29]

I buy it online the company is called Honey Heaven it’s buy one get one half price I take the 10 per cent one

[Merny5]

Glenr, if you are not convinced yet that you should not start ropinirole, here is another member screaming” DON’T DO IT!”😬please