hello Everyone I was just looking up something went to the and came across this article on this webstie i've not even read it but wanted to share it with you all,

A.S.A.P Maybe some of us could comment on it later once we've all read it!!!.

please see link below for the RLS Article.

30 Replies

  • Well, what can i say, another article that doesnt go half way to describing how much this illness impacts on our lives, my rls started when i was 17, so they are way of there, i know people how had this from 8 years old, and i think the poll they did on here shows different results then they state in the article, so all in all, i dont think its a good article in the least.

  • Do you know what Tallula I totally agree with you on this one, I posted it,

    Before I read it myself BUT as poor as it is at least it's hopefully going to,

    Reach out and make more people aware of RLS + at least it's got RLS,

    Some good Exposure on a major Health website which might reach out,

    To a wider audience + increase public awareness even more!!!!,

    Which at the end of the day is a good thing!!!.

  • More awareness is a good thing popmaster, but the people that write these articles, should be locked in a room for a few nights, with one of us, and made to do everything we do, pacing stretching, feeling the pain also, no sleep, then we may get a good article out of them !! :D

  • Once again Tallula I Totally agree with you it would make them thing twice before,

    commiting to writing an Article on RLS!!! for sure!!!!!!

  • I have to say, i love these articles, good or bad, they get you thinking dont they, makes me want to search for more, sometimes we find realy good ones, the research thats going on, or lack of it, im just praying for the day we get one posted, that says " we have found the cause and cure for RLS" ..... bit of wishfull thinking after a bad night

  • It doesnt go far enough as usual on the impact that RLS can have on people's lives. These articles never do unfortunately, not enough to make a reader sit up and take notice. It needs strong words which when someone reads it, they go....i never knew that Restless Legs Syndrome could have such a devastating effect on people. Wishy washy words, the reader just scims over the article and has forgotten it before they get to the end of the paper, or magazine or where ever they are reading it.

  • Yep your so right Elisse but i surpose it exposure for RLS it might reach more people + if only one reader get more info or goes to their GP + hopefully get some Meds + advice then at least the article no matter how bad it is (which it is bad) wil have done some good i hope this is the case.

  • Thats true popmaster, if someone reads it and realises they have got RLS, and sees they can be helped, then that is all good. :)

  • My thoughts after reading the article are the same as all the Members above but as we have all said many times 'Exposure of RLS information to just one more person is better than none'

  • I could agree more i just posted it without reading it because it still rare to,

    have RLS mentioned on such a high profile health website!!!

  • I totally agree with Tallula and Elisse and Barried: it's not a good article, but "exposure fo RLS information to just one more person is better than none". I myself for example have RLS since I was 9 and I'm now 65! How can you explain to another what it feels like? A couple of weeks ago a girlfriend slept in my house and saw me struggling during the night with my RLS and said afterwards: "I didn't know it was sooo bad". We know eachother for more then 25 years, that says enough I would say.

  • That's Excatly what i thought

  • I read that paper, it is not a scientific article with reliable references ( a general paper ), I did a quick search and I found this article going deeper into treatments and explains rls meds ( we all may know more than most of them ):

  • Thanks, Rahim50. That was an excellent article you found; hard facts, indeed. Quite the opposite to the mushy piece from I would suggest that anything that raises the profile of RLS is worthy, but Ms Howe, as an pharmacist/educator, has written an interesting paper here. I always hate having to read 'there is no cure' - how depressing is that? It should at least be tempered by 'however, significant trials are on-going'. :/

  • yes, but people have to know there is no cure right off the bat, so when they start looking for help, they will read the right things. I have found that out. Avoid anything that says "cure" because people need to know this. Yes, of course, there is research going on, but people write all over "How do I cure it?" It does no good to not tell the truth. Just my newbie's opinion. New to this group, not to RLS.

  • As everyone says, nothing new there. Publicity maybe - although inevitably people read/hear the words "restless legs" and dismiss it as trivial! The RLS Foundation in the US has recently changed its name to the Willis-Ekbom Disease Foundation. It's high time it became known everywhere by something which reflects the gravity of an incurable condition with such debilitating symptoms.

  • It's interesting to read everyone's comments as I'm one of the PUK team. I hope you don't mind me joining the thread but I just to clarify/inform a bit more about Dr Sarah Jarvis' post, I appreciate it's written in a 'lifestyle' tone of voice, which may not be everyone's preference, but I wanted to explain that the reason for this is because Dr Sarah originally wrote it for the health pages of the women's magazine My Weekly. That said, all Dr Sarah's articles are evidence-based and this article contains links to our patient information leaflet about this condition, which is clinically-authored and meets the Department of Health's health information quality mark, The Information Standard. This clinically-authored page can be found by clicking on the first orange link in the blog. To reassure you all about the high quality of our medical pages, our site is used and trusted by great numbers of medical staff in the UK and was recently recommended by The Times' Dr Mark Porter as 'the top health website you can't live without.' Would be more than happy to feedback any suggestions you might have about our relevant resources, to our clinical authoring team for their information - thanks for reading my comments, best wishes Stella

  • what is the PUK team please

  • well as for a "lifestyle" we dont really have one, we have to go with how bad we feel each day

  • I have looked at the patient information leaflet on RLS, nothing there that i and probably all of us do not know about already. As i have said on another of my comments, we usually have to inform our doctors ourselves as many do not even know how to treat RLS. This depends is seem on where you live in this country.

    Doctors have much to learn, and need to listen to us, something else that alot of people find when they see their doctors, they DONT listen.

  • well Stellapuk, i hope you dont take this the wrong way, but i stand by everything i said, the article does not go far enough, at all, i dont think doctors have enough training to deal with RLS, the majority of them dont know about the meds, i told my doctor what meds were used, and ive used requip, neupro patch, and mirapexin, that is not working for me now, my doctor is losing patiences with me, because the meds are not helping, and im made to feel its my fault !!, i have RLS every day, and for hours at a time, its awfull, i get lots of pain, and i have arthritis in my spine, so imagine how much it hurts, after 4 hours of pacing around, and being tortured with electric shock type feelings in my legs and lower back, i cant sit down as it gets worse if i do, plus the arthritic pain it sets of as well, and while everyones asleep im in and out of the bath, fall asleep in it many nights, as its the only place i can rest, then finnally fall asleep when its time to get up, for all of 3 to 4 hours. then im expected to function like everyone else, it cant be done, im exhausted and in to much pain, then my doctor tells me im depressed, yes im depressed, but its not the depression causing the rls, its the rls causing the depression, we need and deserve more help than we get, i see a neurologist every six months, i dont know why i go, every time i see him, he just writes to my doctor and gives me iron pills, ive taken more than i care to mention, and they dont help me,plus he tells my doctor "keep her on the same meds" why, its not helping me, all its does is make me gain weight now, ive told both doctors repeatebly that the pills (mirapexin) are not working for me know, but they dont listen, so how is that helping me, they say RLS is not life threatening, well sorry yes it is, people have killed themselves because of the strain this illness puts on them, ive been almost there a few times.

    So im sorry, no offence intend Stellapuk, but it really does not explain how we live, and how we suffer from this at all

  • Have you read any of the other posts on this forum...??? You cant come on here and tell us we are wrong. The article is NOT correct in many ways, RLS, doesnt start just in peoples 30's, 40's , many have had this condition since childhood. Taking iron pills very rarely work, Ferritin Levels are what we are talking about here, which is why iron is recommended to try. Exercise, can make RLS worse for some of us. Medications are limited, the dopamine agonists cause augmentation and not all find they work for them, the same as the other RLS meds that are available for us to try, many find they either dont work or make them ill.

    RLS is not black and white, otherwise we wouldnt all be on here using this forum, looking for advise, help and support.

    I think you and many doctors have much to learn about RLS, in fact doctors learn much from us as we seem to know more than they do.

  • This is for Stellapuk. for her to read...

  • thanks for the back up Elisse, yes i felt a bit patronised to say the least, they just dont listen to use, they ask how we feel then the ignore our answers, and tell us how we feel, ask us how we feel when we have not slept fot 3 or 4 days

  • typos, !! im cross

  • Stellapuk, cant come on to a RLS forum, with a statement like she has posted and not get some angry RLSers, respond back.

  • well if im honest i wasnt cross, i was insenced (sp), i felt like she was telling us of for not being gratefull for, an article that did not do us an good at all,

  • I sincerely apologise if I caused anyone on this forum any distress or upset as this was not my intention in the slightest. To answer your points, PUK stands for which is where the article you've been commenting on comes from. Elisse, just to point out I never stated anyone on this forum was 'wrong' and on the point about RLS and age the article actually says 'It tends to start in your 30s or 40s' rather than stating RLS only starts in this age bracket. The only reason I posted was to explain further about how the article was put together by Dr Sarah Jarvis, who is the author of the piece, and how the piece is based on clinical, evidence-based information. Of course I completely appreciate that members of this forum have a great deal of knowledge and personal experience about RLS - however the article which has been shared by popmaster was originally written for MyWeekly women's magazine (which I explained above) for their health pages, to raise awareness of this condition to the general population, many of which may not be aware of RLS at all.

  • If, anyone wants to write articles on RLS, it would be better if they contacted this forum's Chair on RLS-UK then maybe the fuller picture of RLS, could be written from a real RLS sufferer. That would be better than us seeing articles in magazines and newspapers, which doesnt reflect the true affect of this condition. Thats why we as RLSers get mad, as only we know how this impacts our lives.

    Saying it tends to start in your 30's or 40's is still misleading, if anyone who thinks they may have RLS, and reads the article, who is not in that age bracket, could then think, they are not old enough to have it. That alone could put them off seeing there doctor, thinking they will get dismissed as not old enough..

    I appreciate that RLS awareness was the intention, but maybe next time contact the Chair and use the story of one of us who post on here. That would definately raise awareness. :)

  • Just caught up with this article. Rather wishy-washy to say the least. But it may help one or two people to learn more and realise their awful symptoms and the vicious circle it leaves one in, actually has a name. Armed with this information they can find out more themselves or inform their GP. The information about when RLS usually starts grated terribly as this is clearly not correct information, as we sufferers know so well.

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