Channel 5 Programme

[Joolsg]

I’m getting frustrated as they are refusing to tell us what meds these people are taking. I’ll bet Seema is on dopamine agonists and is suffering Augmentation.

I’ll wait till end and follow up!

[Hidden]

Only took a brief glance - it looks like a repeat of the last one or are they showing some old and some new stuff?

[Joolsg in reply to Hidden]

Mainly repeat but they’ve mentioned cannabis- and John finds it helps. Bet he’s on dopamine agonists as well.

[Hidden in reply to Joolsg]

Thanks, that will save me watching it and wasting my time...and rising my blood pressure.

[Pam34 in reply to Hidden]

Yep, mine is sky high and getting higher. Absolute garbage. Don’t waste your time

[Joolsg in reply to Hidden]

Don’t waste your time Raffs. The programme didn’t mention a single med.

[fssh in reply to Joolsg]

So where's this "new cure"? Talk about misleading

[Joolsg in reply to fssh]

Indeed

[Hidden in reply to Hidden]

I’m getting worked up reading the comments, and I couldn’t even watch the program! So yes, save your blood pressure!🙂

[nightdancer in reply to Joolsg]

Some of us know that John from a FB group. NOT impressed.

[Joolsg in reply to nightdancer]

Isn’t he on any meds? I can’t believe he’s in exactly the same condition as the last programme.

[Hidden in reply to Joolsg]

Jools he was on meds but i cant remember what he took. i DONT think it was any DA's' but i am brain dead lately. I could go and check but he has his own fb group now, (gawd knows why ) BUT as the big group all moaned like us, he might come on there to defend the programme like he did two years ago.

[Lapsedrunner]

Shockingly bad so far isn’t it? How many of us are shouting at the TV “what’s your ferritin “ “get up and move “ etc etc I’m gritting my teeth to watch the rest

[Joolsg in reply to Lapsedrunner]

I just want them to talk about the bloody meds that help and also about ferritin and avoiding anti depressants and anti histamines- so yes I’m getting annoyed again,

[Pam34 in reply to Joolsg]

Yes, it’s truly awful and mainly a repeat. I’m only half watching now, every bit as bad as I thought it would be.

[Joolsg in reply to Pam34]

I really, really hope a neurologist comes on and recommends appropriate meds.

[Pam34 in reply to Joolsg]

Well 20 mins to go and no cure yet!

[Pam34 in reply to Pam34]

Bloody hell, why doesn’t he just write a list! And we all forget birthdays

[Joolsg in reply to Pam34]

Haha- the post it notes that Raffs recommended a year ago have surfaced. This man should join our forum.

[Hidden in reply to Joolsg]

The show popped up as I set the reminder so I left it on in the background.

F&&K me but I forgot about the fools who couldn't work out how to leave a note.

The Dr was a poor choice. From his opening statement on severity from it 'annoys to you can feel depressed' - which didn't mention crushing pain only it that it is an annoyance - to his comments on "we don't know if cannabis works but people says it works by...." Really comes across as someone unsympathetic and only paying lip service.

[Joolsg in reply to Pam34]

And we all know there won’t be one!

[Joolsg in reply to Joolsg]

Terry is on Pregabalin and Trazodone and says he now gets 3 bad nights a month. So we’re getting somewhere at last.

[Pam34 in reply to Joolsg]

I’m not sure we are though. Nothing we didn’t know and we know much more than this.

I thought it very poor

[Joolsg in reply to Pam34]

The only positive is that it at least raises awareness on national TV.

[Lucyjane29]

This is so frustrating!!!! We as a group could help them more...

I have a feeling this is going to be a waste of time.

[Joolsg in reply to Lucyjane29]

I know. Well at least iron deficiency was mentioned in relation to the pregnant lifestyle blogger AND she’s got 1/4 million followers who will now know what RLS is and how bad it can be.

[Pam34 in reply to Joolsg]

Yeah - Pregabalin!

[davidofqwerty]

I was diagnosed with RLS when I was 20. And I've had the extreme version of it which was also in my arms and neck. I'm now 40 and do not suffer from it any more because of a tablet called subutex which is used for heroin withdrawal in addicts. I started taking them 3 years ago and am currently taking 16mg per day. Within 35 minutes of taking it for the first time the RLS completely disappeared. I stopped taking them after 18 months and within 48hrs of stopping them the RLS returned with vengence, so 2 days later i started taking them again and again within 35 mins it completely stopped again and I'm still taking them today. I honestly believe the subutex saved my life.

[Joolsg in reply to davidofqwerty]

Yes Buprenorphine and methadone work very well- no mention of any meds on this programme so incredibly disappointing.

Dr Spinks why didn’t you mention the bloody meds!!!!!?

[davidofqwerty in reply to Joolsg]

Yes restless leg syndrome and a new cure was a very misleading title lol

[keiralee in reply to Joolsg]

Dr Spinks has done a post on the Rls.org.uk site to say he was interviewd for over two hours but most of what he said ended on the cutting room floor. He speaks at the official Rls yearly AGM in London and is very knowledgeable and sympathetic, just a rubbish programme.

[Hidden in reply to keiralee]

Dr Spinks said the same about the one two years ago, when he took part, that most of his was edited down. I would have thought he would have learnt not to take part again .

[Hidden in reply to keiralee]

It doesn't hold that it was edited poorly - 1 as Elisse2 says you would have thought he would have learnt from the 1st time and 2 his opening remarks, (not edited as it was a sentence unless there was some remarkable editing done), did in no way highlight the destruction RLS wages on some of us.

He may know about RLS, he may be sympathetic even, but he is in no way a good advocate as he lacks passion and coherence. Poor choice, not only for the program but for us .

[Hidden]

As we all thought a load of rubbish, mostly repeat of two yrs ago. Like some else has said i bet we could treat them better than what they seem to be getting right now, and augmentation seems to be a BIG issue. So what was the New Cure, did they mean medical CBD ?

[nightdancer]

As some of my UK friends have informed me, the program was rubbish, as we KNEW it would be, It has been in the past and this was the worst one, so I hear,

[Hidden]

One of the BIG groups on FB has exploded with everyone moaning about the programme, all more or less saying the same as we are all saying on here, Some are actually going to complain to ofcom? and advertising standards agency for misleading information in that title and to channel 5. Those on FB can go to RLS-UK fb page and leave your thoughts on there, RLS-UK will be sending everyone's feed back to channel 5.

[Hidden in reply to Hidden]

What's FB?

[Kaarina Administrator in reply to Hidden]

FB = Facebook

[Hidden in reply to Kaarina]

Oh, sorry Kaarina! Just looked at the time stamps and didn’t realize you had already responded! For some reason your reply didn’t show up until now.

[Hidden in reply to Hidden]

Hey Manerva! FB is short for Facebook

[Hidden in reply to Hidden]

Thanks kindly.

[Hidden in reply to Hidden]

It used to mean Foreign Body

[Hidden]

I have recorded the programme but not watched it yet. I didn't expect anything from it other than what folks are writing here. Is it worth me watching?

I guess the only reason for watching it is so I can complain about it.

How's best to complain. Is there some sort of petition. How do I let RLS-UK add me to any list of complainants.

As an individual I feel powerless to make any difference, it requires joint mass action and if any's going, I'd like to join in.

[Smiler53]

I don't know about you, but I started to feel very comfortable watching it - As my rls has now been controlled by Oxy for the last 18 months, I found I was getting agitated watching Seema travelling in car. It brought it all back to me of my horrible car journeys. We were always having to stop to let me get out to walk and stretch, let alone all the other struggles of meals out, cinema, sitting watching tv etc, etc. I only saw the second half of the programe, but I don't think I will watch the rest on catch-up. So disappointing and another wasted opportunity. As for the title, well, enough said!!!

[Joolsg in reply to Smiler53]

I can’t believe poor Seema and John are in exactly the same dreadful condition they were in a year ago. They both are either in Severe Augmentation on DAs or have the worst case of 24/7 RLS ever.

I feel like writing to them via channel 5 to ask them to write to Dr Buchfuhrer and get detailed advice ( and ask what meds they’re on/ serum ferritin etc).

[Smiler53 in reply to Joolsg]

Absolutely, my thoughts exactly. That would be a good idea writing to her, maybe she's not heard of rls.org etc. You would just have to hope they'd pass it on to her.

[Hidden in reply to Smiler53]

John knows about RLS-UK he has posted on here before a while back, so he would be able to tell Seema .

[Hidden in reply to Joolsg]

Didnt Seema say she was taking Tramadol?

[Smiler53 in reply to Hidden]

Umm not sure, didn't see it all.

[Hidden in reply to Smiler53]

My thoughts on the car ride for 4hrs to see John, was they asked her to go by car to show the effects. I bet she could have gone by train, a much more comfortable ride, and she could pace if need be.

[Smiler53 in reply to Hidden]

Yes, she probably could have, but it did show how unbearable a car journey could be. It sure was for me, absolute torture. So thankful for Oxy.