Help needed with an RLS study in Newcastle Upon Tyne

[MStewart]

Hello,

I'm running a study in the Newcastle Centre for Sleep Research (in Northumbria University) designed to develop diagnostic tools to differentiate between RLS and chronic insomnia, and I am looking to find volunteers with RLS to participate in the study.

The study is simple and will take place in the NCSR, and should only take around 50 minutes, participants will be compensated £20 for their time upon completion of the study, and participants within the Newcastle area will be offered a taxi home paid for by the NCSR.

If anyone is interested in taking part or would simply like more information, please do not hesitate to PM me for more information.

Many thanks,

Matthew Stewart

research assistant at the Northumbria Centre for Sleep Research

[jumpylegs]

As a sufferer of RLS/WED for 30+ years and now with symptoms 24/7 I'd just love to take part in your study but it's not possible as I live near Belfast, N.Ireland. I wish you well in your study, as would all of us who are tortured with this devastating condition.

[cefndaniel]

Same as jumpylegs I live in South Wales but would love to participate. Thanks you so very much for doing this study, it is wonderful that someone takes this torture seriously.

[Hidden]

I would jump at the chance to help in any way when it comes to rls or insomnia. But i have the same problems i cant get to u i live in devon so its pretty impossiable for me. Sorry hope you find some more people closer to you

[Maru]

Good luck with your research. As with the others I live too far away to participate but await with interest your results. Something as apparently trivial as restless legs "so what your legs jump a bit" is very debilitating, it affects your physical, emotional and psychological well being, not to mention the effects on your loved ones.

[Hidden]

Have to ask, but why do you need diagnostic tools to differentiate between RLS and Chronic Insomnia....??

[MStewart in reply to Hidden]

It seems like it should be an obvious distinction, but apparently not. In a recent recruitment campaign for an insomnia study carried out by the NCSR (Northumbria Centre for Sleep Research) we found 3,498 potential insomnia participants. On screening it was found that although 472 (13.49%) had a principle complaint of insomnia they did not meet DSM-IV diagnostic criteria for chronic insomnia but had a clinically-relevant complaint of RLS instead.

It seems that lack of awareness for the condition is a real problem, and has resulted in people being misdiagnosed and given treatments that don't help at all, worryingly.

[Hidden in reply to MStewart]

I know that some people who have RLS also can suffer with insomnia, either some meds can cause it, or because people have spent so many years awake throught the night because of the RLS, their body clock can be all over the place, and of course the RLS itself will keep them awake.

I didnt know there was a criteria for insomnia, but i do know there is criteria for RLS, doctors should be asking the patient if they have the 4 criteria that will diagnose RLS. as there isnt a test of any kind for that.

I would have thought that it is the Doctors who should be educated in asking the right questions when a patient says they are not sleeping at night.

Can i ask what you are hoping to achive from the study...?

[Hidden in reply to Hidden]

Sorry for any typos, been awake most of the night...

[hazelrobson in reply to MStewart]

This answer resonates with me. I took years before I was diagnosed. A consultant referred me internally in the hospital as I wasn't getting anywhere with the GP. He saved my life.

[bvlgari]

I too would love to help but live in Swansea South Wales. Good luck I look forward to the results xx

[nannazee in reply to bvlgari]

Hi bvlgari same here only swap Swansea for Port Talbot, I have just completed day 1 of three of the worldwide sleep study, It's about time we got some answers from somewhere there are so many sufferers

[thedragon]

I,d love to do it too. But I'm too far away

[StevenSims]

HI, I think vitamin d3 needs to be researched as it works for me but it causes magnesium dificiency.

best wishes

Steve

[Mishmashed]

Yes, I'm pretty close to you, so I could participate. I have suffered with RLS for about 20 years, I have it from afternoon to dawn, pretty much, and have been medicated for about 18 months. I usually sleep from 5am onwards, depending on how much sleep I get. I'm on the max dose of Ropinerole, after trying Gabapentin, Pregabalin and Pramipexole.

Mishy

[hazelrobson]

I am interested in helping with your research. I live in Newcastle. I have RLS and PLMD,

[landdebbie]

Hi I'd be interested in taking part in your study.

[landdebbie]

I'd love to take part but I'm in Andover Hampshire so unfortunately to far away. Good luck with your study.

[Kaarina Administrator in reply to landdebbie]

Hi landdebbie,

This thread is 9 years old. We did not hear the outcome of this RLS study..

[landdebbie]

Oh ok thank you for that