Today, Lets turn the focus on someone who comes to the site for the
very first time looking for help with RLS.. what would you want them to
know about RLS?
Can you think of something that we did not touch up on lately relating
to RLS , treatment for RLS that a newly diagnosed person would
want to know?
Yes ribs and cinnamon buns washed down with a galloon of beer happy birthday
When is your baby due Leonard20? I'm asking because that is a strange combo that you mentioned there...smartie pants! =D Thanks for my
happy b-day.
How about a RLS for beginers page - an RLS Primer. Just a page of facts about RLS and available treatments + maybe a page of useful and or interesting links. There's bound to be more, I'll come back later
That is a good idea. I am new but am very familiar over many years with the condition. My restless legs comes and goes depending on iron stores but I am plagued by PLMS, with daytime fatigue and sleepiness. I have found rlshelp.org especially helpful. Although US based their medical expert has responded to any queries I put to him and there is a wealth of useful RLS information on the well organised site. This site site looks very promising as it has the function of member responses instead.
Newbies also need to know about ferritin level and other underlying conditions which might be causing the RLS. Other conditions which get mixed up by doctors and neuro's as in PLMD rather than RLS.
Oh its your birthday Yikes, happy birthday to you.... x
Loving your idea and will give it some thought. I only found the site a short while ago and find it very helpful and informative. Thank you.
Thats it ive been forced to use the qwerty !! Hate typing cause it takes me so long an then me legs start screaming at me !!.Hi my names Rob & have been a member of this web site for severel months now albiet a silent one! Hi Yikes, Pete & Gypsy nice of u to think about newbies , im guessing there are loads more out there suffering from this dreadful condition an need help.As a quick overview the meds ive been using are tramadol , co-dihydrocodiene and pregabalin. I suffer with old injuries in the back an shoulder from years grafting(honest!) at my old employment as a furnaceman-17 yrs. I suffer rls not just in the legs but also arms and sometmes the back of the shoulder blades which can be particularly nasty if i dont have any meds esp tramadol !! Got to go now as this has just took almost an hr to type so thnx for being patient lol . Rgrds Rob "aka" choc chip- ( last name is cooke !)
If you come to this community via the Healthunlocked home page, as I think most newcomers would, you find yourself looking at what seem to be random posted comments, or the option to sign in/ sign up. Of course anyone can click on the posts tab and browse to their hearts content, but they may not realise this. I would suggest a clear welcome, an invitation to browse the posts and a prominent link to an overview of what RLS is.
Treat visitors as you would guests in your home. Welcome, come in, big hugs, then sign here please.
Oops, just read gypsy49s post, so ditto. I was seeing completely different replies, which were not relevant. Makes sense now.
Welcome to HealthUlocked RLS forum Sir Rod (chocchip- cookie made me chuckle)
We are very pleased to have your input since you are also fighting the battle
of rls.
It sounds like being a furnaceman took a steep toll on your body and now rls
came about.. Keep reading these posts and see if you find yourself relating
to anyone on here. If you can respond, great..if not, we love for people
to listen to what we have to say..we are raising awareness and trying to
help one another with the symptoms of rls.
Oooooh.. You were the person who brought warmth and comfort into our
homes.. I bet some areas where the furnaces were kept were creepy.
No doubt there were holidays and weird hours that you serviced peoples
noisy, non working furnaces. A furnaceman is so under-appreciated
until people lose use of the furnace. My brother in law does the same
thing as you did. =)
I need some time and I have to ask everyone on this forum for their input
so that we do have a good starting point for someone who is not sure
if they even have rls or maybe someone who never knew that their condition
had a name. The more people that we get on-board, the better chance that
we can push the drug companies, make demands to get better treatments.
My purpose for being here is just exactly like the rest. I am looking to fight
my own strong battle with rls. I am pretty new on this having stumbled
upon this website about a year ago or so.. The only benefit that I expect
is that I will find ways to cope until better treatments come out. I want
to gain an understanding of rls, what to do about the symptoms and how
to be the best own advocate to reach out to others who suffer as much
as I do. So here I am... keep shooting ideas as I begin to write that
valuable starting point for rls'ers. =)).
As a newbie myself I think all the above sound like brilliant ideas - it can be a bit intimidating to wade in sometimes, especially if you're not used to forums and such - you can feel like you're intruding on a conversation - although once I jumped in here everyone was so welcoming that I felt right at home!
Another site I belong to is totally different as it's all about scrapbooking, but there are similar issues with new members maybe not knowing where to turn first - we tackle this by sending new members a standard welcome email with some pointers and links to get them going and a personal invitation to ask questions etc - two of us from the design team are on the "welcome wagon" and check for new members every couple of days.
Might work here as well?
Annie :o)
That may work. I found this site when I was so worked up about my problem...I kept tossing and turning in my bed..I had covers all over the floor, my legs were searching for that perfect position and I
had to be up for work in less than 2 hours.. well anyway, I typed
"Legs that cannot get comfortable, awake all night" and this
site popped up.
For me, it wasn't cut and dry that I belonged on this site. I wasn't even sure if I had this new name syndrome. I was reading bits and pieces- I was very turned off by the words that I was reading because someone was talking about something that sure didn't sound like RLS. I went to another site (Web MD) and started reading that
these symptoms that I have never talked about with a doctor really
does have a name and there are others out there.. just like me.
By the time I reached the RLS Foundation, I was crying with relief
because I saw myself in the same place as them and not only that,
I saw that there was some help available..pills that could stop my
legs from those horrible sensations that I never could put into
words. I finally had words to describe to the doctor.. I knew what
I had in store for myself..
I came back to this site quite by accident. Elisse had posted
the definition of RLS very clearly.. I found some of the friendliest
people on earth to talk about my new obsession...finding out
about RLS. Having everyone else on here in my corner saved
my life. I met people who found good relief, I had others reach
out to suggest their own bag of tricks to "Make it though the
night." I started making my own treatment plan because I was
well equipped with the best information to ask my doctor for
those certain drugs that I was reading about. We didn't waste
a single moment at my appointment to diagnose my RLS..
The doctor did a short questionnaire with me and ended up
prescribing exactly what I asked for. I was given the pros and
cons of the drug right on this site so for me, the decision was
the right one, I knew from everyone on here exactly how long
it would take to start working and if it failed me, I had the name,
reviews and information about the side effects right here on
this site.
I had to look around a lot on here to get just the basics..
maybe it won't be so difficult for the next person who stumbles
upon this site to find that information.. so it's our site.. we all
can do a big part to help others learn about RLS.. It's not
a big changing of the website - it's just a little introduction to
welcome people and to show them around a little bit.
Blimey I fell asleep there ain't Sir Rod Only Sir Andre
Whoops
Take your clown shoes off Leonard. =p
yes it's long..
Well of course, I'd refer people to the RLS UK website as a good starting point!
yes some need more simplified information, not to be blinded by science RLS is hard enough to deal with, without needing a degree in medical terms and jargon
I also found the site completely by accident. Like everyone else on here I suppose, I was pacing the floor during the night (already knew it was RLS) and decided enough was enough and I didn't stop looking until I found you guys. I asked my doctor if there were any physical help groups but she looked at me as though I was little mad! She did say she would "keep and ear to the ground" though but nothing so far. I'm sad that so many people suffer this awful syndrome but am equally glad to know that I am not alone. One of the worst symptoms for me has been the loneliness during the night when you feel like you are the only person on the planet suffering this. All the information about the various treatments given on here are a big help and whilst my meds (Requip XL 4mg) are working at the moment I know there is other stuff to try should it fail. Again my thanks to you all for just being there.
It does get a little lonely in the wee hours of the night to morning.
Do you find that sleeping is easier in the early morning hours?
First post... Looking for advice on best working drug please Example of a new sub category for our rls site..It would clean up
our site a lot and will encourage others to stick around.. 30 years sufferer with RLS desperately looking for help please 
Taurine Supplement for RLS
New FDA approved therapy (fingers crossed!)
