Some good reliable websites could be added to that list. Ones that actually tell you what RLS is. Some people are not sure that they even have RLS, or how it is diagnosed.
I only realised what it was because I took a mentally disabled lady to the doctors because she couldnt speak to the doctor on her own I tried to describe her symptoms for something else that wasnt rls. The doctor printed me off some sheets about different things that it could be and rls was one of them. Then I went to my own doctors with it and started pushing for a diagnosis. x
Looking good Yikes.
By "Bag of tricks to relieve rls" do you mean a "This works for me" category?
I like the idea of an off topic category. Computer forums I visit have them as it encourages people to post without worrying about being if it's something they should say or ask.
Perhaps a "Introduce yourself".
• in reply to
We are on here to be anonymous so I am not sure how
much info we can add there...hm will think on that. We have
a personal page that can introduce us.. as well. You'd be
surprised how many will not comment or say anything on
the forum but they learn from us -it's all good for finding
collective information from many sources on the internet.
Scratch bag of tricks to "Works for me" Thank you..
• in reply to
Sorry Yikes. Forgive me, it was nearly midnight.
By introduce yourself I meant a place where newcomers could say hi, but on second thoughts Off Topic would be fine for that purpose.
• in reply to
It is 3 am over here in Wisconsin.. My words are
getting me in trouble elsewhere.. I must have a chip
on my shoulder or be really crabby tonight ..I am the
one to say I am sorry.. Introductions might be good..
to give a little background on what conditions we have
and medicines that we are trying, have tried.. that's not
giving away any identity at all.. Please forgive me..
I am going to bed and I am staying put there...I tried
going to bed 2 or 3 times and my mind won't slow down.
Something is bugging me a lot tonight.. a real lot...so I
will talk to everyone tomorrow.. Please continue to
suggest Twitchy.. I very much enjoy you're joining
in on discussions.. I love your sense of humor and suggestions.
Look at the website "RLS.org". No need to recreate the wheel. They have categories laid out already and it might do us all a service to use the same categories as I'm sure many if us refer to that site also.
i just took a look at this site RLS247, and there is so much on there, its hard to find what your looking for, maybe Yikes is on to something here, if we have our own site, with easier access for us
yes thats what i mean, a place on here for us to look thinjgs up, i dont like when theres loads of stuff and your not sure what to put in the search, then when you do a search, it overwhelms you with so much stuff, you there ages before you find what you need, and ive read some comments on here about it not being very helpfull, and seen some responses that say its easy to find, sorry no i dont think it is, and if this site had it, it would be a big help, not so much on it to wade through though, as that put you of when your not feeling great
when researching online, outside of the forum, for anything on RLS, you have to be so careful on what you look at, there are lots of website's that will not only confuse you but they have people selling products that they swear will "cure" RLS. So, thats why it would be good to have in the categories, websites that are "safe" to look at. Including this forum's own website. Good website's will give good info on RLS.
thanks but i do know about those, especial a german guy and his book, and all the other so called cures, i just thought as this is a forum for RLS its a good idea to have the info here, instead of searching allover the web
nothing to be sorry about well thats two of us for the idea then, lets see how many more are. I do think if we had the info here it would save a lot of stress for us, as some of us must have other illness, like me, and not allways up to sitting at a PC or laptop for ages, i know i cant, ive been sat here for 1 hour, and im in pain now, i have osteoarthritis in most of my spine, my neck is classed as very severe, also the bottom of my spine, so the constant searching involves looking at the keyboard then lift my head to see the monitor, not easy at all, and very tiring, so come on Yikes get it sorted !!!
we probably can't have too many. That can be a pain to classify for example someone new finds this site and wants to find out if people taking dopamine agents have runny noses.. (probably not) AND they want to know if anyone tried standing on their head while drinking through a straw helps.. then there can be a little confusion or it will end up on the Misc.. which is probably where most conversations will fit.. but having those other categories will make the old timers of rls a lot happier for not having to repeat, repeat, repeat the basics.. I think that you understand that.. or maybe
I am pulling rabbits out of hats again.. ? =O) haha. It's been a long day for me already. I skipped out for lunch and came back to working with some problematic personalities in my daytime job.. Why do I attract the sticks in the mud? They find me in every meeting.. every event..
plus, if theres something we need an answer to, it would save the waiting for someone to come to the forum, and then we cant be sure we would get the answer we need, i waited around for ages the day i joined, then got sidetracked by yikes and piracy, i forgot what i wanted to ask after that !! , shes a lot to answer for that woman
Yes,..!!! Not everyone is available to answer someone when they post or they do not know the answer, and sometimes posts "sit" there. Of course we are all still here and would answer when we can. But having a list of good stuff would i am sure benefit many. LOL Yikes lead you down a different path thats for sure. Sorry for your pain, i have to say i am lucky, (depending how you look at it) i only suffer with RLS, for now anyway, altho i am in alot of pain today from the RLS. I cant sit for long, have to keep pacing to relief the pain.
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Elisse, you are speaking the truth. I am grateful for the bonding moment of everyone that joined in our conversation. It's important to do on a site where strong opinions can sometimes get out of hand and bad
feelings start popping up. Speaking of.. there are many different avenues that lead to the same road.. so what works for one will not work for another..suggestions are always welcome. =) Thanks for joining Spike.. don't ever be afraid to take the floor by starting a new question thread.. It's a pretty sure thing that someone will find your question and try to answer it.
Indeed, I do miss newcomers especially when they jump in on an conversation that is already existing. I am on here mostly for my own rls.. but I try to keep looking out for newbies. I do apologize for the silliness and all of it's fun for
anyone who was offended but I think that we can officially say that your welcome was the grandest welcome ever on this site. =)
ha ha glad to hear it, i do like to take folk by surprise, and i like to jump in also, so stop shilly shallying woman and get the info site sorted, or are we going for another boat ride ??
Ahhh.. I didn't look there for the categories.. Thanks rLS247!!
I always said from day one that I wasn't trying to recreate the wheel..
just trying to clean it up and be more user friendly.. =)
I was only looking at Health Unlocked since they already hold the templet
to recreate the same thing.. That's exactly why I asked you guys and
Sounds like a great idea to me to have categories to make it easier to know where to start looking when you first wade in! Can't think of anything else off the top of my head but more categories might come to mind once the ball starts rolling ... maybe they could be added as we go along? :o)
It's likely that more categories will be added...so the creator of the layout
of this site will need to have 2 or 3 blank categories until we see how this
plays out. I am not the genius who thought this up.. other sites do this
to be more user friendly. Thank you Ms. Annie for your suggestion. Welcome
to this forum.. =)
There is a pdf source( review article) titled on "100 questions and answers about restless legs syndrome" I am sure you may all know most of them( both Q.s and A.s) but there might be a few help some of us, here is the link
You just made yourself the high captain in our boat.. I have
been searching for this between working my day job and taking
breaks to walk around, interact with my family..
God bless you Rahim! =)
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Good find rahim..!! I have trawled through most of it, the only thing i found wrong, they have found three genes which relate to RLS, which isnt mentioned. I am not expert enough to know if it is ALL correct, but from what i read it seems to be. Needs someone who knows enough to give it the once over. BUT, having said that, it gives really good info on ALL aspects that relates to RLS. I am sure it will be very helpful to have this in the categories.
• in reply to
I agree with you Elisse, In fact most reviews are not so complete. I will be happy to help with all my skills, no pretension
Oh Elisse, does this make your day or what? It addresses every single
question that we must repeat over and over again.. to ourselves and to
others who are questioning if RLS is what they have... I am so pleased..
Rahim just turned my attitude to good after such a lousy night and day today..
I am looking for the good but it's hard to find when a trusted friend was deeply
hurt by something that I said.. She unplugged on me last night.. It was something
that came up that no one knows about but me on this forum.. we were discussing
things personally... something was read wrong or interpreted wrong.. by her, by
me.. and feelings got hurt.. that's the trouble with not talking face to face on
these kinds of sites.. there is too much room for interpretation..and usually
the intention gets blown far out of proportion or taken the wrong way.. I don't
have a mean or insulting bone in my body but last night my ugly side that I
try to keep hidden came out.. and we lost a good contributing member.. (female)
You can't even imagine how it feels to have someone walk out on you..
when you are trying to figure out what the heck you said in the first place
to set them off.. I lost a great friend on here.. and I am sorry that she left
because so many of you had great conversations with her.. she's always been
upbeat and fun to talk to.. Anyway.. It is my own fault.. and while she did leave
me a private e-mail address, I am not sure if it's appropriate to follow up there..
I do deeply apologize to everyone on this forum.. Perhaps she feels lied to or
used by me in some way.. I cannot say exactly why.. but I will tell you that even
though I am suggesting that I am looking to improve the site lay out, I am NOT
part of administration.. I do not possess the power to control who is part of the
decision making on this forum nor do I, or anyone else make money off of this
site.. If you go to the very first page of this Health Unlocked, you will see how it
was created by two men who's idea was to bring patients, doctors together through
talking to one another.. everyone here is a volunteer!
For every single opinion on this site, there is a flip side of the coin.. just like when
people talk about the gray areas of black and white.. It's hard to have self control
when you are feeling so passionately about the heads side of the coin to see
the other person's view without attacking them takes some skills.. some good
self control... When the army of Heads side coins comes at the tails side of
the coin... it gets a little personal..I don't want for anyone to feel like I do today
nor do I want for anyone to walk off of this forum, to shut down their account
because they feel so cornered.. I don't know if that was the case with T .. but
Here I am holding the bag.. and I feel just horrible.
• in reply to
Yikes, perhaps your friend will realize as you have that misunderstanding happen all too easily online and decide to come back. I have only been a member here for a short time and while I can see you may have a less tender side I can plainly see that you go to great pains to understand and help others. You played a big part in making me want to be a part of this community.
Sorry to hear about your misunderstanding with your friend. It's such a shame and like you say, things really are better said face to face. Unfortunately this is a forum and it can't be done. Don't beat yourself up too much. I am sorry for her too because she has lost the comfort that I think we RLS'ers get from this site. Keep up the good work as it is much appreciated and I don't know what we would do without the "core" few of you. I am fairly new and already know whose those people are. Well done and I hope we can all pull together in one way or another to continue onwards and upwards.
• in reply to
twitchy- thank you. you are a kind person to me. =) She won't be back..I wish
that I could explain it to everyone on this forum. I will take her secrets to the grave
with me if I live to be 100.. I respect everyone's privacy on this forum.. She
left for reasons that have nothing to do with me... that much I am sure of now.
I miss her tremendously already. I always feel rotten when someone drops out.
That is the way groups go sometimes, Yikes. It is like everything else. Can't keep 100% of everyone happy 100% of the time. Have learned my lesson after over a decade of groups. I used to take it really to heart, but I have a feeling you could not have done any better in that situation, so take heart. It happens in every group eventually. Or people get what info they want and leave. I am not well enough to do too much with your new idea, or your "category idea", but will try some. You will find trying divide things into categories will be difficult, but doable if you have cross references, too. Did you get the "bag of tricks" from Jill Gunzel's book or her web site , which I have to get back up on line? It will be nice to have the RLS Rebel web site back up (may she rest in peace). That has been a harder job than I thought. Keep up the good work! I have not been able to post for almost a month. But the glitches are gone!
im in another group besides this, and never do they have any nastyness, everyone is there for each other, allways and without fail, 100% happy and helpfull, so there i would have to disagree that not all groups are happy,
Maybe a category concerning how to explain RLS to family and friends? RLS is very difficult for anyone who doesn't suffer it to understand. For example, when I start pacing my son will say "mum's off with her mad woman disease again". Many things said in fun can be very hurtful when a person is at a low ebb. How best to deal with this sort of situation??
and under this category, things like "concerns about surgery with RLS", and that would have to include the anti-nausea meds that can send RLS into tailspin, which is not a good thing after surgery at all. Ask for Zofran, which was only used for chemo patients til a few years ago, and is the only one that is not known to make RLS worse. These are listed in their entirety on rlshelp.org on the treatment page. You can get ideas there, too, and give credit where credit is due. Also, just a list of the best RLS web sites is huge help, so that newcomers can sort the crap out from the good. ;)Because we all know there is a lot of "questionable" web sites out there.
What I did do wrong is open up a very old wound -not intentionally.. and she
did find me again to tell me that I didn't do anything wrong..some other
person or people ganged up against her and took her, someone else that
she cares about and hung them out to dry so to speak..She is a super
sensitive person.. she feels very deeply and this hurt her so much that
she can't forgive.. and forgive is what I was pushing for her to do..
That's what prompted my two sides of the coin talk and also to be more
tactful when you disagree or when you feel very passionate about an issue.
Our words will sound mean sometimes when really we intend to be helpful..
One of the worst things that happens in opinionated groups is when people
come marching at you with their army of people that agree with them and
they stomp the other person down. It's not the first time that it ever happened
on here. Someone has told someone else to get their head out of their rear
end because they had a bad idea or said something that wasn't correct..
It happens on many other forums and soon individuals leave, groups leave..
I don't want that to happen here...but it has been and she is not the first person
to bring this to my attention..
Sometimes this group is all that people have..people with rls are very misunderstood.
The ones that are on here all of the time are the ones that need support more
than some that pop in every so often..We are on a big ship together because
there is no cure, it seems hopeless sometimes and rls causes us to lose
important relationships, our jobs, our security, mostly our sleep.. we get pretty
crabby sometimes and difficult.. Come to this forum to learn from others and
to engage in question & answers, a good debate that is fair and respectful...
try hard not to insult anyone.. be part of the solution, not part of the problem..
If you don't like what you read, ask questions or state your own beliefs without
throwing big rocks, cannon balls, boogers or something distasteful.. try hard
not to gang up on anyone.
If I didn't say this to everyone, I would be lying to everyone.. because the real
problems are here and we are losing great people over this silliness and extreme
disagreement. It's okay to disagree.. Private messaging about someone else
does go around usually and then administration or others have to hear about it.
It hurts to be that person who gets talked about. No one on here needs one more
person to think that they are nuts or not believed.. If you think that I am making
a huge deal out of a couple spats.. you are wrong.
Now everyone forgive me if I have offended you.. this wasn't put out for just
one or two people.. we all are guilty sometimes. Try to remember that there
is a lot of room for misinterpreted messages. Someone might get a word
wrong, someone might have their brain going faster than they can type..
Take what you like and leave the rest here.. for others to form their own
opinions. We will run smoother, less people will be afraid to add their
thoughts and the questions will start being answered by everyone on here
without fear that they didn't get something right..
Thank you. This big long note was all necessary. Now get back to the
questions and usual business.please. <3 (means that it comes from the heart)
• in reply to
not been on since this, as im very upset about it, if someone writes something you dont like or believe, leave it dont attack, you dont know what else that person has going on in their life, i asked for help once what i was desparate for my niece, i didnt get it, i would not have stopped our loss of her when she died, but the response i got was just to have a few questions fired at me, and then no answer when i responded to then, im sad that we lot a lovely member, again! it stinks !!
• in reply to
So sorry. I do remember that night. My gosh.. For me,
I had no idea how to help. My knowledge on Diabetes is
slim to none. I think that we will be on the right path again.
I sure missed you Sister3.. =)
You are right about people having a crapton on their plates.
People usually do come on a forum as a last resort, at least
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
The most common failures in relation to the treatment of RLS, from my experience:
LDN (low dose naltrexone)
