Hi

[Pippins2]

Hi everyone just a reminder that it is RLS Awareness Day on 23rd of September.What are you going to do? I have a few more posters to put up.Have given them to doctors surgeries already so going to persuade a few shops to maybe put up a poster x

[Mopsy1950]

Hi Pippins 2 ,,is RLS day in every country ? as I've never heard of one here in New Zealand it would be good for more people here to know what RSL is about ,I think people think it's like scratching your leg or something ,no idea when you try to explain they just look and nod their head .is there anyway I could put some leaflets on notice boards in supermarkets or other places it's probably to late to get a copy of your leaflet

[Pippins2 in reply to Mopsy1950]

Hi Mopsy yes as far as I know it is international! Kaarina has come up with an idea that you could maybe do. X

[Kaarina Administrator]

Over the past year I have sent in so many #Under the Umbrella photos of me, family and friends and their friends to raise awareness of RLS. These will all be shown again on RLS Day.

undertheumbrella.eu/events/

If you would like to help raise awareness of RLS, wherever you are, send Under the Umbrella photos to the Chair, Daragh Bogan. Email: [e-mail] They will be used for sure to raise awareness of RLS on 23 September.

It is easy and fun, all you need is a camera, an umbrella and someone willing to be photographed.

[Pippins2 in reply to Kaarina]

Great project Kaarina! X

[Mopsy1950 in reply to Kaarina]

Will do that thank you ladies

[Joolsg]

Where can I get posters? Would love to put some up. People who don't have RLS have NO idea how life altering it is. When I say I have MS they all look horrified and exclaim how awful it must be for me. It is NOTHING compared to my RLS but people seem to think it's just a few odd twitches in your leg and shrug their shoulders. It is a serious, horrible disease.

[Pippins2 in reply to Joolsg]

Jools I got the posters from RLS -UK last year I distributed most of them at the time in doctors surgeries /hospitals etc but still have several left over so going to try local shops next. Kaarina are they still available?

How are you doing? Did you get your Oxy yet? x

[Joolsg in reply to Pippins2]

I got the oxy from my GP yesterday and she said I should only take one 5mg at night. The leaflet says you should take one every 12 hours. I'm actually now too scared to try them especially after reading all the side effects and having to sign a special form at the chemists as it's a controlled drug. I'm going to ask my friend who is a GP if it will work by just taking one at night. All the stuff I've read on Google seems to say you need to keep the dose steady over 24 hours ( so take it every 12 hours) for RLS.

Last night was so unbearably hot here in London but unbelieveably, I slept from 3 am - 9.30 ( with 2 loo breaks) after taking 3 Tramadol and 2 gabapentin. Now thinking I should stick to them until I get my appointment with Prof Chaudhuri at Kings in late October. It really is trial and error trying to find a solution isn't it?

I will find some relevant tweets on Twitter about RLS day and retweet.

Hope you are resting well,

Take care,

Jools

[Pippins2 in reply to Joolsg]

Jools the Tramadol was actually raised to controlled drug status around 18 months ago so is now in the same category as Oxy and Morphine /Fentanyl etc. Have you not been double signing for your Tramadol? You should have been yes you need to feel comfortable taking the Oxycodone. Is it slow or fast release? I know many who only take it at night (if it is fast release ).My GP prefers a steady flow of slow release over a 24 hour period so you don't get the peaks and troughs but I take it for spinal problems rather than for RLS. I am having some improvements thankyou and can sit for around an hour on my coccyx cushion now. Just starting building up without the cushion but only able to do a few minutes at a time but better than pre op. Take care message me anytime. .Pipps x

[Kaarina Administrator in reply to Pippins2]

Hi Pippins and anyone else interested in promoting awareness of RLS, A4 posters, A5 leaflets and trifold leaflets are all available from RLS-UK. Email: [e-mail] and state what you would like and how many, along with an address so they can be posted to you.

RLS-UK will be more than delighted to forward information to anyone willing to help promote awareness of RLS and what a great month to do this.

[Kaarina Administrator]

Thinking ahead, RLS-UK are now selling Christmas cards (£5.00 for a pack of 10 + postage) on the RLS-UK website should you wish to promote awareness this way during the festive season. If interested they can be found here. Link: rls-uk.org and click on Shop.

[Pippins2 in reply to Kaarina]

Great point Kaarina! I will be buying some x

[Kaarina Administrator]

If it is any help to those that may wish to distribute the RLS-UK poster it can be downloaded from the RLS-UK website. rls-uk.org/membership and scroll down. The poster is printed on both sides, so there are two pages to print. If it is for pinning on a noticeboard or sticking up in a window, the first page is probably enough to promote awareness in the first instance.

[Tease-ah in reply to Kaarina]

Found this image (ideal for post on FB, etc..)

tinypic.com/r/2v0ian9/9

[Kaarina Administrator in reply to Tease-ah]

Brilliant!

[Hidden]

Good one pip