Restless Legs Syndrome

elnafinn
elnafinn Member Posts: 8,043
edited 19. Apr 2017, 13:18 in Living with Arthritis archive
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.
The happiest people don't have the best of everything. They just make the best of everything.

If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    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
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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.
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Thank you for letting us know about this! My partner has RLS, so we'll be sure to watch it.
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    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
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • barbara12
    barbara12 Member Posts: 21,128
    edited 30. Nov -1, 00:00
    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
    Love
    Barbara
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    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
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
    Thank you. I'll definitely be watching it.
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    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 :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    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 :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    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 :wink:

    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.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    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
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    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.
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.