Radio 2 Jeremy Vine show

[goldlay]

Thought people in the UK might be interested. My boss has just emailed to say there is a doctor going to talk about RLS on the Jeremy Vine show today, Radio 2 12-2pm

[Lapsedrunner]

Thanks goldlay, usually can’t stand the programme but will listen today!

[Hidden]

Any one who listens in can you let us know what this doctor has said on RLS. I have only just seen this post so i have missed the Radio programme. Thanks

[Lapsedrunner in reply to Hidden]

They described it well, and commented on the distress it causes .

Talked about iron, mentioned Gabapentin and DA’s (with a brief reference to augmentation) Discussed drugs that can worsen RLS and triggers.

Shame they didn’t give reference to rls.org website.

I wouldn’t expect anything “new” to be mentioned, but at least it gave people the idea that there is mileage in seeing your GP

[Hidden]

Oh flip, I just saw your post, wish I had known sooner as I would have listened to that. Did you catch it and were there any pertinent points we would all benefit from knowing about please?

[Kaarina Administrator in reply to Hidden]

You can listen to it on iplayer. I believe it starts at 1.08.29 and again at 1.18.0.

[goldlay]

Nothing new sadly.

[Hidden in reply to goldlay]

[rls-insomniac]

I agree, nothing new was said. A listener even mentioned a bar of soap as a way of dealing with it. Mmmm now that sounds familiar! Surprised the BBC even let that comment be broadcast! Usual stuff was said, avoiding caffiine, alcohol, sleep hygiene etc. Nothing that a lot of us don't know about already.

[Lapsedrunner in reply to rls-insomniac]

To be fair they rubbished the soap suggestion, and debunked tonic water!

[rls-insomniac in reply to Lapsedrunner]

They did indeed, but the soap suggestion did make me smile though.

[Hidden in reply to Lapsedrunner]

Well thank goodness for that.! I would have been shaking the radio if he actually agreed on trying those two things

[Jelbea]

Hi there. I heard the programme to-day and the only other point I would mention that while the doctor said she suffered from RLS she also implied that it was nothing much to worry about as "no-one dies from it".

I find this comment dreadful as on this site we all know how desperate people become and also I remember reading statistics of suicide rates from RLS. This kind of comment trivialises what people suffer. No wonder I never mention to anyone that I suffer restless legs because you mostly get comments like "Oh yes I get fidgety like that as well" or just blank looks. I wish that the doctor in question really knew what it is to suffer really severe RLS starting at 2.00 p.m. and not stopping until 3 or 4.00 a.m. and sleeping for only two hours night after night for weeks and still continue with their work duties. This is why I am now on oxycodone to try to keep sane by getting more rest.

I must say that the "no-one dies from it" comment actually enraged me on behalf of all the suffering I have heard about on this site.

Rant over, thankyou for reading

Have a peaceful night

[Hidden in reply to Jelbea]

Hmmmm me thinks said doctor doesnt have it severely. In one way she is right, no one dies from RLS itself, its the sleep deprivation, the depression that some suffer with, that sends people over the edge, that they cant cope with it any more. They would rather end it all , than suffer night after night, in agony of not even being able to lay still, having to pace the night away. Just when i thought this said doctor was giving a good interview , they spoilt any good with this stupid statement.

[IrisRN in reply to Hidden]

I believe that there are far more deaths from rls that are not reported as so. People that don’t get enough sleep are far more at risk for cardiovascular disease. People that are sleep deprived fall asleep behind the wheel or get in serious accidents. I’m sure there are alcoholics from trying to just lie down. The list goes on and on... and yet the doctors are still clueless. And we have doctors that describe rls as fidgety. After three hours of being just fidgety, I am usually pacing and when I stop, I’m banging my foot against the floor trying to make it stop. Just guessing this is more like what you all experience vs a little fidgety.

[Hidden in reply to IrisRN]

Hi Iris,

I maintain that the name “Restless Leg Syndrome” has played a large part in the illness not being taken as seriously as it should. Many sufferers have had to tolerate the “Oh I get that” response from people who clearly do not.

I believe that this label trivialises the illness, or worse still makes it sound comical.

Parkinson’s ; Huntington’s ; Alzheimer’s; Hodgkin’s; Crohn’s are all named after the people that presumably either discovered or carried out extensive research into these terrible diseases. They don’t not take their name from the symptoms. RLS on the other hand does.

Although I am aware that it’s not alone in this respect, I feel it to be counterproductive, detrimental, and unnecessary.

Not everyone agrees, I know, but this is my firmly held belief.

[Hidden in reply to Jelbea]

What a shame. Otherwise from what others have said it was at least informative.

That comment may come back to haunt that dr as my similar one many years ago does to me as an ex GP!

At that time I had it mildly, or maybe moderately. I also watched my Mum’s fidgety feet as she called it. I did explain to the patient what it was & that I had it too & at that time there genuinely was no treatment available.

I don’t know how bad hers was but I had absolutely no idea how truly dreadful & life affecting it could be.

[Jelbea in reply to Hidden]

Nice to hear from you Alison7. You obviously were sympathetic to your patients and did not just ignore their suffering. Years ago I was put on Mirapex and augmented very quickly on it (my tolerance to drugs is dreadful). The doctor told me to stop it and of course I then got severe withdrawal. In desperation I phoned for an urgent app to beg for help as I could not even sit down. Eventually the GP agreed to giving me 5 Valium 2 mg. tablets and as my husband and I left the room the GP said he did not know "if there is such a thing as restless legs". Years later when I reminded him of this statement he completely denied saying it but my husband was witness to it.

It is awful to think that this is still the case years later.

I hope you are OK at present.

[puzzler1 in reply to Jelbea]

Hi Jelbea, I agree with you. I have chronic RLS and rang the programme up and talked to a researcher for a long time about my history, meds etc. But they didn't use any of my information, preferring to talk about a lady who was cured by giving up caffeine and bars of soap. And frankly the doctor's input was nothing more than can be found on the NHS website. I thought it is was very disappointing and trivialised what for me is a torturous and life changing condition.

[Jelbea in reply to puzzler1]

Hi puzzler1. Your experience proves to me that they did not really want to know the true ins and outs of RLS, but were content to make little of it in their ignorance.

This is what is so frustrating for all of us here.

I laughed at the caffeine bit as caffeine actually helps me and if all else fails during the night I have ProPlus tablets (caffeine) of which I take one and get at least some relief.

I agree this is a life-changing condition which eats into many aspects of day-to-day living.

Nice to hear from you

[Hidden]

That is an awful way to be spoken to and yes I always tried to be sympathetic & I hope I always came over that way.

But honestly until relatively recently no one in the medical world talked about RLS & if I hadn’t had the family info I honestly would not have known about it.

At the time my patient spoke to me I was glad to be able to explain what it was but it haunts me that I think I just gave her the impression that we just had to put up with it as that’s what I had to do. I had no idea how awful it could become,

I remember the DA’s coming out about which I was very cynical & deciding that it was a money making venture for the Pharms ( which it may well have been ). I already knew their effect wore off & caused other problems for the poor folk with Parkinson’s ( though it buys them some time with better mobility ) & thought I wouldn’t dare to touch them for RLS - Gwen advertised for RLS there were no warnings.

What I am really trying to say, without giving anyone an excuse, is that without personal experience it is virtually impossible to understand. My sister has it too bit much more mildly & she too talks as if I am just making a fuss so I daren’t mention it!

[Marmaset]

Thank you for the information about today's talk on Radio 2. I will certainly be listening.

[DicCarlson]

Player here - start it at 1:08:53 bbc.co.uk/sounds/play/m000fnwf

[Sara_2611]

Oh god i missed it is there a repeat of it on the internet -I had no idea t was on