Restless Legs Syndrome

elnafinn

For those that suffer with the above, there will be a much awaited Channel 5 programme on RLS, entitled Desperate for Help,
aired in the UK on Tuesday, 4th April at 10pm (it will also be available on catch-up if you miss it).


Moderators - I hope this posting is allowed.

dreamdaisy

Thank you, Elna, what a kind thought to post this. I have seen the trailer and intend to watch, I am lucky in that I don't have this problem but who knows what the future holds? DD

elnafinn

Hi DD

Thank you for your reply. It is much appreciated. I do suffer with RLS but only mildly and intermittently. Some people have an awful time with it. It is a condition that is not fully understood and many doctors are at a loss as to how to treat it. What can work for one patient does not help another at all.

It is also good to watch even if, as you say, you thankfully do not have this condition because you may well meet someone who does or even get it yourself. (I hope not )

Those with RLS often receive the same responses we can get if we mention our arthritis to those that are lucky enough not to have it.

littlemimmy

Thank you for letting us know about this! My partner has RLS, so we'll be sure to watch it.

elnafinn

Hi littlemimmy,

Thank you for replying.

I am sorry to hear that your partner suffers with this condition. It can really be very debilitating and difficult for partners, like you, to see how sleep deprivation and RLS can affect another person.

Please spread the word if you or your partner knows of anyone who may be interested to watch it.

Elna x

daffy2

My late father in law had this on top of other difficult health issues and it was the one he often found most difficult to deal with(as did MIL!)

elnafinn

Hi daffy

Thank you for replying.

I can well understand how your late father in law found the restless leg symptoms sometimes the most difficult to deal with over other health conditions. It is a difficult condition to comprehend, like arthritis, if you do not suffer with it yourself and many doctors do not know much about it either.

Elna x

barbara12

Thankyou Elna..
I remember my late dad suffering form this and being given quinine ..(I think )..it wasn't taken seriously then but I saw the trailer for the program.. those poor people..x

elnafinn

Hi Barbara,

I am sorry to hear your late dad suffered from RLS. The quinine probably did not help, it is usually given for cramps. I agree, RLS is not taken seriously and many doctors do not know much about it either unfortunately. Let's hope this programme changes the situation somewhat. This is the first ever televised programme on RLS. It has taken about a year in the making. The charity RLS-UK has been involved with this so I am sure it will be a success. Some newspapers have printed articles on RLS from time to time often giving out unhelpful and false information/advice. The charity was, unfortunately not involved before these articles went to press.

Nothing will keep me away from watching the programme on Tuesday!

Love
Elna x

bubbadog

Thank you for letting us know Elna, my OH suffers badly with it! That's one of the reasons I don't sleep in the same bed as him. I will watch it with him as I'm sure it will have some good advice.

lynnemarie1123

Thank you. I'll definitely be watching it.

elnafinn

Hi bubbadog,

I am sorry to hear that your OH suffers with RLS. It can be an awful syndrome. I hope there will be some good advice. Unfortunately many doctors know very little about RLS so I do hope some medics will be watching.

I expect you and your OH are aware of the RLS website: www.rls-uk.org

Elna x

elnafinn

Hi lynnemarie

I have a feeling that many will be watching this documentary. It has had good publicity with many sufferers sharing the details of when the documentary will be shown.

The word has been spread in the US, Australia, New Zealand, Peru India and more than likely other countries too and ways are being found for them to be able to view it.

Elna x

stickywicket

And the verdict is?

I didn't contribute to this thread partly because I was out of the UK and partly because we know the cause of Mr SW's RLS is his ectopic heartbeat which sounds scary but is perfectly harmless. He doesn't do anything about it other than sometimes kicking me in bed

elnafinn

Hi Sticky

There were mixed reviews . Those who are new to RLS and/or who wanted to show their friends and families what it's like to live with RLS generally found it very helpful. Many people found us through the programme, people who perhaps felt alone and didn't know where to turn to and it's good to know these people finally have found a community that understand their plight.

At the same time, many people felt the programme lacked insight into the condition and hoped it would have explained more about what RLS is, what causes it (including triggers), the fact that it can affect many body parts, and coping mechanisms such as tips and medications/treatments (the latter of these being a significant point). Many of these people were disappointed by the programme.

The programme told well over 750,000 people about RLS and there were over 10,000 visitors to the RLS-UK website and noticeably more people joined the discussion forum immediately after the programme, so thankfully it did help a huge number of people.

Further to Channel 5's programme about RLS, the charity has been contacted by ITV's 'This Morning', another sign that the Channel 5 programme was a success and is helping to raise awareness of RLS. This is with a view to Dr Chris (Steele), wishing to discuss RLS with someone who has found RLS difficult to live with, to discuss ​how it effects their life on a day to day basis.

So that the verdict.

Elna x

stickywicket

Thanks for the explanation, Elna. I had been wondering. Unfortunately these things often seem to promise more than they deliver.

It seems as if the value was in the raising awareness but, for actual info, people would have done better to visit NHS Choices. The latter do make some suggestions for relieving the problem.

Anyway, we've just had a month in our son's California King bed so I wasn't kicked once

elnafinn

Hi Sticky

Yes, it was great for raising awareness and the RLS website was mentioned at the end of the programme which was brilliant. There is lots of information on there and also a link to the very active RLS discussion forum.

I hope you have not got too used to the king size bed - you will be ordering one next! I hope you are not kicked too much - sounds like your hubby may have PLMD as well as RLS.

Elna x

stickywicket

PLMD? That's a new one on me but we have already decided we can't collect any more diseases or illnesses as the meds' bag is already too full when we go away

We already have a king size bed. A California king is both longer and wider - 72" x 84" as opposed to a UK king which is only 60" x 70". Room for an extra one which is useful in a morning when our grandson climbs in with us.

elnafinn

Hi Sticky,

As a result of the Channel 5 programme there was going to be a lady interviewed about her RLS on This Morning on Tuesday, but as Breaking News was announced, that interview, of course, went out of the window. ;)Perhaps on a future programme on This Morning?

Elna x

Starburst

I was disappointed with the programme and quite distressed by what I saw. Of course, it's always upsetting to see people suffering but I felt it was quite intrusive. Mine is very mild in comparison and probably just mild anyway. I was heartened to see the face of the neurologist who diagnosed me though. I wasn't convinced with his diagnosis at the time.

They didn't really talk about medications or treatments or really, anything much that helped. It was a shame.

elnafinn

Totally agree, Starburst re nothing mentioned on medications/treatments. The lovely Dr Spinks was interviewed for 2 hours but was only on for a few minutes. More than likely the same happened with the neurologist too. But it definitely promoted awareness of RLS which as I mentioned in a few posts above brought in many sufferers to the RLS FB page and the discussion forum after the programme. As a result of the Channel 5 programme a lady was to be interviewed on This morning on Tuesday but in the end it did not happen because of Breaking news.