UK RLS Patients Survey

[Joolsg]

RLS-UK is working with Joeli Brearley at Pregnant Then Screwed and have prepared a survey for completion.

Would all UK members please complete?

Many thanks.

Also , please share on any other UK groups you belong to.

The more, the merrier.

pregnantthenscrewed.typefor...

[Kaarina Administrator]

A good response already from our Restless Legs Syndrome: RLS UK FB page. 💪💛

[Joolsg in reply to Kaarina]

👍Brilliant.

[Kakally]

Done…

Thanks Joolsg

[HipHop1972]

Thanks Joolsg, great idea and I’ve completed and submitted it.

HipHop1972

[Joolsg in reply to HipHop1972]

Thanks 😊

[Huntingleroy]

All done Jules , thank you

[Joolsg in reply to Huntingleroy]

👍Ta

[Flora-Rose]

All done. A good survey. Easy to fill in.

[Joolsg in reply to Flora-Rose]

👍 Ta.

[Kaarina Administrator in reply to Flora-Rose]

Two people on the Restless Legs Syndrome: RLS UK FB page also mentioned that it was an excellent survey to complete, everything was relevant and easy to answer. 💪👍

[Bumble34]

All done.

[Joolsg in reply to Bumble34]

Many 😊

[Elisse3]

Done on the RLS-UK fb page.

[Joolsg in reply to Elisse3]

Ta Elisse

[Jelbea]

Delighted to complete this survey which I found very easy to do as the questions were so relevant. Thanks Joolsg

[Joolsg in reply to Jelbea]

Thanks Jelbea. 😊

[smilingjane]

Done Thank you Jules.I also ticked the box that I would be willing to speak to the media.

Jane 😊

[Joolsg in reply to smilingjane]

Many thanks 😊

[J_J_758]

Completed!

If there is ever anything else that comes up I’d really like to get involved 💛

[Joolsg in reply to J_J_758]

Many 😊

[Laineypl in reply to Joolsg]

I've just completed this. 🤞🤞it makes people sit up and listen to us all

[Joolsg in reply to Laineypl]

Thanks 😊

[Redders01]

I have just filled in your great survey and well happy to chat about it. With plmd included my consultant says it is the worst he has ever seen, I have tried everything but nothing helps and sometimes get to the stage where I would love to just chop my legs off, I go four nights without sleep. Sometimes it is that bad.

[Joolsg in reply to Redders01]

Every time we hear that a patient says their RLS/PLMD is the worst a consultant has ever seen, it is usually because the patient is on Ropinirole, Pramipexole or Neupro patch.What meds are you taking and what dose?

[Redders01 in reply to Joolsg]

I have tried and had bad reactions on everything they have tried, I have been on Pramipexole for 33 yrs now, 0.088mg, was on 6 p/n, now 3 with clonazepam, but only sleep about 3 nights p/w, I have tried everything they can think of but to no avail, I know I am augmenting but they don't know what to do, I am also on a lots other meds,,,

[Joolsg in reply to Redders01]

Please list all the other meds. Many could be making the RLS much worse.But Pramipexole is the worst possible med. It feeds the disease and makes it ultra severe.

As you've been on Pramipexole for 33 years, you need to get off it very, very slowly. Taking at least a year.

[Simkin in reply to Redders01]

I also got to the stage of wanting to remove my legs, until I was put on buprenorphine.

[Joolsg in reply to Simkin]

Absolutely. I had decided to logically book Dignitas. Buprenorphine literally saved my life.

[Simkin in reply to Joolsg]

And you were the one, Joolsg, who encouraged me to give buprenorphine a go, so thank you.

[Huntingleroy in reply to Simkin]

Jools and Sue also saved my life by getting me through hellish augmentation and suggesting Buprenorphine which literally saved my life . I didnt even bother to see my Gp through this time as clueless . This forum was always there for me day and night for which Im eternally grateful

[Simkin in reply to Huntingleroy]

My sentiments exactly.

[Joolsg in reply to Huntingleroy]

😊Aww thank you. I am paying forward the help I received from Pippins, Elisse & Madlegs when I first joined. Over 8 years ago. And shockingly, doctors are still dishing out dopamine agonists to thd next poor guinea pigs.

[Joolsg in reply to Simkin]

😊 We all help each other. And if our experience can persuade UK neurologists to prescribe Buprenorphine or methadone for refractory RLS, then brilliant.

[Simkin in reply to Joolsg]

Yes Joolsg. Quite agree. You may remember that some years ago the RLS Society invited all its members to go up to London for a "European Workshop" where we all pooled our experiences and I thought that was so incredibly useful for us all to share what we personally were going through & the different reactions from the medical profession to RLS. It was also useful to hear about research going on in Europe and how RLS was viewed in different countries.But those were the days when neurologists were prescribing pramipexole, neupro patches etc. It was in the days before opioids came into the equation so I wonder if opiods are recommended in European countries.

[Redders01 in reply to Joolsg]

My consultant was trying to get methadone prescribed for me but was denied by the people in charge

[Joolsg in reply to Redders01]

Can you appeal? Methadone and Buprenorphine are the only opioids that help refractory RLS when all other meds have failed.I know Bart's, London, prescribe methadone for their MS patients witj RLS.

Where are you?

[Redders01 in reply to Joolsg]

When you look at my other tablets are any of them working again my RLS, I live in Birmingham, and am going to call my consultant on Tuesday to tell him what you have said, as he called me his guinea pig, as we have tried all sorts to no avail, but I have to work on getting my iron levels up again, could you remind me as to what they should be please.

[Redders01 in reply to Simkin]

I am on a lot of other meds, but don't know if others are affecting it

[Joolsg in reply to Redders01]

Lots of meds trigger RLS. Dopamine agonists ( Pramipexole, Ropinirole and Neupro) work at first, but then ALL worsen RLS. Anti depressants, sedating anti histamines, statins, beta blockers, PPI meds are the main culprits.I suggest you complete your bio to say where you live, what meds you've tried and the meds you take now.

Start a new post and you'll get lots of helpful replies, including how to appeal for methadone using research papers as evidence.

[Redders01 in reply to Joolsg]

I have just updated my y profile symptoms etc

[Joolsg in reply to Redders01]

Redders,I suggest you put up a NEW Post, rather than asking questions in response to other posts. Only the original poster will see your questions.

You need a lot of detailed help.

I've looked at your profile and if you are on ALL those meds listed at the same time, over 15 medications, then you will need a lot of help and replies.

I will just look at RLS meds for now.

Are you taking Pramipexole, Rotigitone, gabapentin and pregabalin NOW? All at the same time?

Who is your consultant?

Has he told you that you need to get off all dopamine agonists? Has he told you how to do it?

We do have names of consultants who will prescribe methadone or Buprenorphine and you could see them. But you have to get off ALL dopamine agonists first for the other meds to be effective.

If you are currently taking the 15/16 meds listed, many of them DO worsen RLS, but you should concentrate on getting off the dopamine agonists first as your RLS will be VERY severe while you're on them.

Show your consultant the RLS-UK website and Useful Resources.

It has a withdrawal schedule for dopamine agonists.

But make a NEW Post now and set out your history in the story and the meds you CURRENTLY take and the doses.

At your stage, on all those meds, raising serum ferritin won't help much as you are on too many trigger meds.

That can wait a little. Until you've started withdrawal from dopamine agonists.

The statins and blood pressure meds all trigger RLS, but you should stay on them until you are off the dopamine agonists and have your RLS under control.

When you are sleeping properly, your cholesterol, blood pressure and health will start to improve. You can then discuss a safe switch to better meds with your GP or heart consultant.

Getting RLS treated properly by a doctor who can get you OFF dopamine agonists will improve your other health conditions.

[Myfurball]

Just done the survey 👍🏻

[Joolsg in reply to Myfurball]

Many 😊

[Kaarina Administrator]

629 responses have been received already which is better than expected. We need 1,000 minimum.

UK members, please complete this survey. It take 4 minutes of your time.

[Marymill]

Completed 😀

[Joolsg]

Thank you 😊

[davchar23]

Submitted already

Davchar23

[Joolsg in reply to davchar23]

Many 😊

[Islay9]

Done via their page yesterday. Excellent survey with relevant questions clearly understanding RLS suffering and it’s quick to do too. I really hope we can help make a difference.

[Joolsg in reply to Islay9]

Thank you x

[Kaarina Administrator]

So far we have had a good response from social media platforms where this survey was launched on Monday. Thank you.

We need more though!

UK members, please complete this survey. It take 4 minutes of your time.

[Joolsg]

Bump

[Rameau]

Very straightforward to complete. It only took about 5 minutes.

[Joolsg in reply to Rameau]

Excellent. Thanks.

[Embroiderer]

just completed

[Joolsg in reply to Embroiderer]

Thanks

[Kaarina Administrator]

Where are our UK members?

Please help RLS-UK and complete the survey. It will only take 4 minutes of your time.

[Simkin]

Joolsg, have completed the survey.

[Joolsg in reply to Simkin]

Thank you

[Joolsg]

Bump

[Joolsg]

Bump

[Kaarina Administrator]

UK members. Please help RLS-UK and complete the survey. It will only take 4 minutes of your time.