What's happened to this community? - Restless Legs Syn...

Restless Legs Syndrome

16,044 members10,153 posts

What's happened to this community?

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Has everyone gone? Someone said Talula's gone. Yikes has been silent for over a day. Hardly anyone is posting or replying.

It's like ghost town, except not haunted. That might be an improvement.

54 Replies

Every group has quiet times, and this one is no exception. People come and go all the time, and that is "normal", too. At least that is what I have learned from many years of moderating groups. This one, admittedly rarely goes quiet, so there has to be an "off" day once in a while. I was out all day for doctor's and pre-surgery appts, and I know I have been very quiet lately because of lots of other things as well. Lots of family crisis stuff. So, hi! ;)

what a shame, i was reading through the posts and questions when i joined, and Tallula put some good ones on, and yes, its unusual for Yikes to be so quiet, after all the sailing we did last week, it is quiet without her :(

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Hi nightdancer. Pleased to meet you, Yikes tells me you are a super hard worker and well informed on the subject of rls.

I'll try and input what I can too when my brain, hands and eyes start working better again. I'm having a bit of an annoying time with the rls. On 6th night with only 1 or 2 hours sleep and nothing works. In desperation I resorted to diazepam, zopliclone and dihydrocodeine, zero effect. Oh well, it won't go on forever.

Hi too spike28. I enjoy reading your input, it's nice to know there are some one can have a banter with.

I think I shall have to re-join with a better user name.

I'm going to lie on the bed and listen to Beethoven for a few hours. If I don't fall asleep it will then be Bach.

Night night folks.

spike28
spike28 in reply to Hidden

we can allways give you a nick name

I think most people pop in here just to see what's going on but without posting anything. I'm sure there are plenty of us looking in regularly jyst waiting for the right post to respond to.

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Yeah!!!!!!!!! Slept last night, perhaps the zopliclone had a 24 hour delay.

spike28, no. I do not want to think what sort of a nickname you would come up with considering your fascination with the nautical. Though I live beside the sea. Hmm, you've inspired me to change my profile picture.

Hi arjay. Quite so. That's one of the reasons I support Yikes' idea for a "Off topic" category where people can say good morning or put posts like this,

Well, must go. Have to take the wife to the dentist. Jolly day out.

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Morning everyone, i am flying in and out, as apposed to using the boat. Life takes over sometimes, and we have things to take care of at home. Catch you all when i can.

spike28
spike28 in reply to Hidden

flying boats come to mind :)

Hi I'm immisymz I read a lot of the posts but don't have anything to say so that's why I'm quiet but still here soz.

Carol456
Carol456 in reply to Missymaz

why apologise ?? your here getting the help you need your way, you dont have to comment or post, not obliged to at all, :)

Kaarina
KaarinaAdministrator

I look in every day but do not always have anything to add. This is a small forum compared to other forums that I am on for other ailments that have attached themselves to me over the years. Some have a huge following and then there is always something going on.

Perhaps is it a good sign if the site is not busy! I know I am pre-occupied with other things atm which is how I like it.

Hope your day is going okayish.

I shall look in tomorrow. ;)

Missymaz
Missymaz in reply to Kaarina

Hi karrina reading your post about other forums interested me greatly I've been looking for a forum for Depresion and fibromyalgia and would be very great full if you have any ideas or links for either of those ailments that are so misunderstood and rarely have medical answers. Thank you. Missymaz

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Hidden in reply to Missymaz

Hi, Missymaz, have you looked on the HealthUnlocked community list. There could be forum's for what you are asking for.

Kaarina
KaarinaAdministrator in reply to Missymaz

Hi Missymaz, as Elisse mentioned, looking at the HealthUnlocked Communities is a good start. If you go to "Communities" at the top of the screen you will be able to see all the other organisations on here. There is FibroAction (8127 members) which may be of help to you.

Arthritis Care has a forum. arthritiscare.org.uk/Home There are quite a few postings on there from people with Fibromyalgia. There is also a helpline. You can phone in, email or post a thread to them on the forum.

There is UK Fibromyalgia: ukfibromyalgia.com/forums/ .

Kaarina

Missymaz
Missymaz in reply to Kaarina

Hi Kaarina thanks for your help and information very much appreciated

Missymaz

Kaarina
KaarinaAdministrator in reply to Missymaz

Hi Missymaz, no probs, a pleasure, hope it may be of some help to you. :)

Kaarina
KaarinaAdministrator

I have just received my RLS-UK Newsletter. :-D I attended this years AGM but it is still great to receive a resume of the talks that afternoon. Also included is a chart listing some of the most popular RLS medications along with recommended starting and maximum doses and summarising side effects. A useful document to keep.

All paid up members receive 4 newsletters a year. Membership is £10.00 per year. :)

jubilee
jubilee in reply to Kaarina

Kaariina I would like to pay membership and receive Newsletters not sure how ?

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Hidden in reply to jubilee

Jubilee contact the Chair on here, he will tell you how to pay membership and then get the Newsletters. I also got mine this morning,. :) Or try this website rls-uk.org click at the top..Join Us. you will see where you can get the membership form...

jubilee
jubilee in reply to Hidden

Thank You for info Elisse, all done and will be in the post in the morning

Kaarina
KaarinaAdministrator in reply to jubilee

Hi Jublilee, that would be great! Thank you. :) We need as many paid up members as we can get! More the merrier! Elisse has come up trumps and given you the information. Thank you, Elisse.

Here is the "Join Us" link: rls-uk.org/#/join-us/456097...

Have a good weekend,

Kaarina :-D

jubilee
jubilee in reply to Kaarina

Thank You Kaarina. All done ready for posting in the morning, you have a "twitchy" free week end

Kaarina
KaarinaAdministrator in reply to jubilee

Kaarina likes this :-D Thank you, the same to you too, Jubilee. ;)

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I didn't mean to imply that members should feel compelled to post anything ever, but I'm glad I started this.

I think it's lovely that people just say hi, or anything. After all, I understand this is a Community not a forum.

I got to meet nightdancer, spike28, arjay, Elisse, Missymaz and Kaarina and that makes it a beautiful day.

Carol456
Carol456 in reply to Hidden

Hi Twitchy, so now you can add me to that list, and i dont think anyone would have taken it that way :)

Hidden
Hidden in reply to Carol456

opps, sorry antique77.

Kaarina
KaarinaAdministrator in reply to Hidden

Hi Sowilo and everyone on this thread. I just made 42 currant buns. I am sending a plate over to you all. Enjoy! ;)

Perhaps I will not bother with cooking an evening meal tonight!

Kaarina

Hidden
Hidden in reply to Kaarina

Snap..!! of sorts. I have made 18 spicy apple and pear muffins to day..!! The trouble is most of them my daughter took home for the grandchildren. I still have 6 left with me, if anyone wants one... :D

spike28
spike28 in reply to Hidden

i made quiche and apple turnovers, we having a tea party or what :p

spike28
spike28 in reply to Kaarina

never got a currant bun, Elisse hijacked them :(

Kaarina
KaarinaAdministrator in reply to spike28

Cheeky Elisse! She better send over those 6 spicy apple and pear muffins now toute suite. ;) Actually we could have a tea party. What a grand idea. Pass the teapot! ;) I will swop two currant buns for a slice of quiche please Spike ......

Carol456
Carol456 in reply to Kaarina

cheese and brocolli or egg and bacon ?? Elisse isnt allowed any, hijacker

Kaarina
KaarinaAdministrator in reply to Carol456

Ooooh, a choice even! Egg and bacon please! thank you. Aw, I am sure Elisse did not mean to take your currant bun!! I am sure you will be most welcome to have one of the spicy apple and pear muffins. Cup of tea, anyone?

spike28
spike28 in reply to Carol456

you made quiche?? or you spying in my kitchen Antique ?/

spike28
spike28 in reply to spike28

no sugar then thanks

Carol456
Carol456 in reply to spike28

ha ha wild guess Spike, there my favorites :P

Hidden
Hidden in reply to Carol456

Seems like a lot of cooking went on today in RLS world. I bet every thing is gone now, sounds as if everyone has had a bit of everything. I think i missed the boat, spike. lol.

spike28
spike28 in reply to Hidden

nah, you ran of with the currant bun's i bet

Hi everyone ! I look in every day and look forward to posts but not adding a lot at the moment

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Never got hungry reading posts before.

I see the administrators have very kindly changed my name, bless them. I do not know why I chose Twitchy-H, Sowilo is so much nicer. It is the Norse rune for Sun or the letter s, which is the first letter of my last name.

First name is Harry, the first letter would be Hagalaz (Hail). That might explain why I'm bi-polar (ish).

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Hidden in reply to Hidden

Nice name, :)

hi Yikes, we missed you xxxx

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Hidden in reply to spike28

I missed you girls and guys even more =)

I am spending some time with my sister..Gosh

when sisters get together, they just yak, yak, yak..

up a storm.. She's my oldest sister. I no longer wonder

why we used to get hollered at by my dad to "BE MORE

QUIET" at night as we grew up. When my RLS isn't

acting up, she starts talking to me and I am awake. =O

She is asking me a lot of questions these days about

RLS. Her daughter, my niece probably has it.. She's

28 and pregnant. I know very little about that..so I am

looking on here for information to tell my sister. =}

Kaarina
KaarinaAdministrator

See what you started Sowilo? Bet you did not think the thread would continue quite like this. All good aye?

We must all do this again, some time. ;) :)

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Reminds me of when this forum first started Kaarina. :)

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We need a pinned Chat Room. Yes?

There's plenty like a natter now and then. A defined place to do so would be good.

If you agree please say so and maybe the admin fairy will oblige.

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The Chat Room was asked about a long long time ago, and we got the answer that it couldnt be done. Even a dedicated page just for chat was suggested and that couldnt be done either. Dont forget anything that we might want to change on here is down to HealthUnlocked not the Admin. I think we will just have to start a chat thread when we want to just chat away, just like this thread, which went really well. People can join in or just read and it gives everyone some distraction from their woes. :)

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It seems odd to me that the page that opens by default is Latest activity rather than Posts where posts can be pinned. New visitors to any community are faced with a string of replies, which could be regarding just a few or even one post. That said, praise to the HealthUnlocked team for setting up and running this site.

Praise too to yourself Elisse and all who help make this community such valuable resource.

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Hidden in reply to Hidden

Thanks Ellise. =)

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A lot of us have been saying the same as you, but it seems to be out of our hands. It is confusing when newbies arrive on here for the first time. They see all the latest activity and wonder what they are all about. The only thing they can do is pick through and read them. For those of us who KNOW how the site works, its not such a problem. But yes we are lucky to have this community and learn from each other. :)

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Hi everyone I check in everyday and night! Helps so much to know we're not alone with this arful disease. I'm quiet so don't have much to say but enjoy reading all your posts. Xxx

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I do apologize for my part in all of this..

I am going to try harder to be very much more positive on here.

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No need to apologize, everyone needs time out at some time, re-group so to speak, take time with family or just be too busy with other stuff to be on here constantly.

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We are going to carry on for the group members that are

having a heck of a time with rls.. I am having a time. I left

my dopamine in the hotel room.. dang it. Now I am home-

going to leave again with the hubby - we get a date alone. I'm

not going to be back on until later tomorrow night. Tonight

just takes the cake.. I won't get my pills until tomorrow..

I cut down to about half or a little less of the dose that I was on

last week.. I am no where near ready to stop. My legs went crazy

very early this morning and part of last night while we watched

a show. I dread this hour long car ride with my hubby.. then a show..

or beer fest.. same building, same time. haha. Leonard20.. you

set a good example for all of us. =)

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