just like to say that this forum the community for the subject that was intended for as forgot that this site is for the community to talk about their experiences with regards to there RLS & not about things that have happened in general.
RLS: just like to say that this forum... - Restless Legs Syn...
RLS
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connie50
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42 Replies
•
If you are talking about my post, i am sorry it offend you, i was just showing concern for my fellow RLS sufferers and hoping they were all ok, But i will remove my post....
spike28• in reply to
hi Elisse, well it is a site for RLS,but as with everything else, we do wander of into other topic's part of life really i guess, and lot's of us do have other medical problem's or some other worrie's, and to me, it all add's up to make your RLS worse, and how can we seperate life from our RLS
connie50• in reply to
sorry if I upset a few people but I didn't meant to, all that im saying is this is a forum for RLS & not other topics & yes the winds have caused havoc but not where I live, thanks for you concern
there's a 14 year old lost in the sea, so i think we would all be thinking of him and his family, how awfull for them, yes we do wander of topic, but not in a nasty way, sometimes some of us just want to know that we are there for them i think, i know i do, and not much wind here, but lots of rain, and i hope they find the young lad safe
• in reply to
Elisse, i did manage to see your comment, before you deleted it, and i can see nothin wrong with you being caring at all, and you didnt offend me in the least, sorry you deleted it. i also think everything in our day help's or hinder's how we feel with our illness's, this is our community, it's not wrong to ask how we are all coping with what
ever life throws at us, hope your having a good day
We have gone through the "of topic" thread lots of times, and its not happened, Healthunlocked surely have more important thing's to deal with, than giving us a "chat room" we all suffer from the same thing, so we should all get on with it, i also like to know how everyone's coping, not just their RLS, but their life in general, and some of us may be sat at home all day alone, so what's wrong with being friendly and asking how everyone is, it may be the only their only contact through the day, so maybe we should be more caring with each other.
cicek• in reply to
Well said. RLS affects all aspects of our lives and our families so it's nice to be caring in a general aspect.
Carol456• in reply to
totally agree with you, sister3, spike 28 and cicek 
TiredparentRestless Leg Syndrome
Agree with many of the comments. My view is that there has to be a balance between the chat and the RLS comments and information. At times, it swings too far towards the chat and for a short time, that is fine and much needed light relief! Personally I enjoyed the jokes but wouldn't want them all the time. Going back to what I said a few weeks ago, if someone new visited the forum and all they saw was chat unrelated to RLS, they may not want to hang around!
I get email alerts to my phone each time a new question or post is listed and I do find it a little frustrating when I go to check my messages and they are mainly chat which are not of interest to me. We have hundreds of active members, many of who are happy to read the messages on the forum but rarely or never post (which is absolutely fine) and that means that hundreds of people are reading things which are of little or no help to them and their RLS.
I'm more than happy to see one question about how people are following the storm in the UK yesterday but would not want to see lots of banter between a few individuals about a load of nothing!
thank you for that, this is what I mean everyone seems to go of the subject of RLS this is a forum for RLS & not a chat line but it seems I've caused to upset a lot of people out there & for that reason I will not be a member of this forum anymore thankyou
I will also say that i dont wish Connie to leave, that is not what any of us want, but a community is a community, some of us have more illness's than RLS, so if we are restricted to just talking about RLS, how then can we discuss our meds, some of them interact, so we do go of topic somtimes, and other thing's we chat about, just goes to show what a friendly and supportive forum we are, im in 3 RLS forum's and we all do the same, chat about other problems we have, i cannot see any harm in it
icu2, i wasnt refering to anyone specific in my comment, just saying my opinion, so no offence to you was intended, nor was any offence intiended to any other member, just saying my opinion that's all
TiredparentRestless Leg Syndrome
I'm very sorry to hear that. Obviously it is your choice whether to leave or not but please bear in mind that for all of those people who perhaps disagreed with you, there are probably a larger number who support and agree with what you said but didn't say anything. Maybe the Admin team should have said something sooner as I have certainly been concerned about how things have gone off course at times! You were brave enough to say something and I'm sorry that you have been left feeling the way you do. As I said before, it is about getting a balance between the RLS related conversations and general chat. The Admin team are planning to look into the options for a chat room section and other sections as previously mentioned and will post any updates about this on the forum.
• in reply toTiredparent
PLEASE EVERYONE STOP FOR JUST A SECOND..PLEASE!!!!
CONNIE IS HAVING A PARTICULARLY HARD TIME WITH RLS
SHE HASN'T SLEPT IN A VERY LONG TIME....SHE IS VERY SORRY
AND FEELS JUST HORRIBLE TO HAVE SAID THIS STUFF...
I looked in on her yesterday and today...we are figuring out stuff together
on the rlshelp.org website...Remember that feeling of not
knowing or understanding what's wrong with you?..so please lets
give her a little room to do some reading with me on wwwrlshelp.org.
She's working hard on getting some answers..and we will both be
back up and on here all rested and hopefully with new meds" I have
a little bit of problems with my own meds and I need to change up
something." To you Elisse, she's really feeling bad about it and asked
me to please let everyone know that." Okay? Can we even get this
post deleted? A fresh start would benefit Connie when she is ready;"
She is also looking on here to learn some more.. Thank you everyone
for your help and for seeing us through..xxxx Karen
spike28• in reply to
think we are all having a hard time, why else would we be here, why delete this ?? it show's all our thought's, and none of us are perfect are we
• in reply tospike28
Funny how I have been just spoon feeding myself
with whatever repels everyone else on here lately..
That's fine to keep it up...I don't mind at all..I just
have to take myself down a few pegs when it comes
to trying to clean up after a spill that made someone
feel bad...If you think it's serving and it was effective
in saying something that you wouldn't have otherwise
said,..or someone made a point that they wouldn't
have otherwise...I just had a vision of when a dog goes
poo on the floor and we keep rubbing their nose in
it...I guess I read this wrong..Yes, RLS..and kindness.
And of course everyone ought to say the same that
they are here for the same purpose...I will remove
that posting or better yet..leave it up so people can
see what a welcoming group we all are...Sorry for
my part in this...
Carol456• in reply to
Nobody want's Connie to leave, we all say thing's we regret afterward's, and we are all saying we dont want her to leave, so i cant see a problem with this thread, maybe it will teach people to have a care for other's feeling's afterall, who know's what people are having to deal with elsewhere, and what you can cause if you say something to upset anyone, we are all grown up's arent we ?
WOW, i seem to have caused my own "storm" on here unintentionally. I deleted my post and thought that would be the end of it. I didnt expect for all this to happen. Please dont leave Connie. I am sorry if my post has caused all this.
• in reply to
Special message up above for you Ellise <3
connie50• in reply to
hi elisse your post didn't offend me at all & I was feeling a bit down at the time, so please don't feel bad & no I haven't left the community just keeping a low profile for a while keeping in touch with yikes
• in reply toconnie50
I am fine Connie, we all have melt downs sometimes, i have had them my self when feeling low and sleep deprived. Glad you are still here.
• in reply toconnie50
glad to hear your still with us Connie 
we all have down times
connie50• in reply to
thanks for your support just weren't myself RLS getting on my nerves
• in reply toconnie50
I think we have all been where you are now Connie, some still are. Hope things improve for you soon. Hang in there.
• in reply toconnie50
When I get no sleep I go nuclear!! I'm awake at 715 pm and I am not going to make it another minute..Goodnight and Connie..you know I tried..just 1/3 of my dose and I am falling asleep as I write this.
Bet at 2am I will wake up again..then I will just munch on the rest of my dose..=))
I think it's lovely to read about different things on here - especially when I cant sleep - you are a lovely person Elisse and please don't change x
KaarinaAdministrator
Hi Elisse, I did not see your thread before you deleted it, but please continue to be caring. I agree with Connie too that sometimes there is lot of "chat". In my humble opinion, it is all good, but it would be better if the Chat on the forum could be "separate" so you could flit from the RLS chat postings to the RLS advice, help postings and vice versa or choose to stay on one or other.
Kaarina
Please don't leave the forum Connie. I know you have been struggling (as many of us have) but you will get more help on here than anywhere else! I do agree that there is a lot of "chat" sometimes but these people probably need light relief while struggling with their RLS. I know when I am awake during the night it would be nice to chat to anybody about anything.
I see no harm in asking how people are doing after or during a hurricane, or whatever weather disasters that happen. There is no reason why someone can not be caring. In my groups, we do get off topic sometimes, but even off topic, RLS is "running" in the background. For example, stress can make RLS worse, so checking on RLSer's in a stressful situation is a nice thing to do, and there should be no issues with it. I see many new questions, so there is plenty to do. And, if this is the kind of thing that would sadly make someone leave a group, I would think it would help to know that most people here care about everyone here, and asking about people's welfare is no where near close to breaking any rules. Like Rosie said, and I have done the same in my groups ( US based), RLS is top priority, do not really like too many jokes, if at all. But there are a lot of lonely people looking for help and yes, a friend, once in a while at 3 a.m. and we are all sleep deprived. So, in my groups, we will have a "poetry day" or a joke day ( it has to still be on topic for RLS or other sleep disorders) but it is ok to have a 'casual day' to lift up spirits once in a while, at least in my opinion. It definitely brings people closer, makes us FEEL like a community. This thread does not make it feel like a community, and there is no reason for all of this. RLS is serious and we all know that, but we need to remember we are dealing with real people here in real situations, and all kinds of emotions are flying around. It was nightmare for me having extreme RLS after our hurricane, and I wanted my RLS friends so badly for support and just for a "cyber hug". Yes, we are going to talk about things, illnesses other than RLS, because a lot of things are connected to each other. I think we do a really good job of staying on topic here, most of the time, and I say well done to the ADMINS, because this group has gotten so big. It is hard to "manage" large groups, so the larger the group, the longer the list of rules or "suggestions". That much I DO know. 
have a good day, and hope not too many of you are wearing yourselves out more by fixing up damage from the storm. Remember to pace yourselves.
Wow guys let's try and keep it together I have severe chronic RLS, pain, cancer related stomach problems on top of profound deep Depresion probably as a result. I don't normally have much to say on posts but read loads while I lay awake every night with normally less than an hours sleep. So please let's all be understanding about everything we need to share just to get through daily we are here for support so let's support each other. Missymaz. X
NHL missymaz. I have beejn suffering badly with my legs And more so recently but on Wednesday night I took 500 micrograms of CLONAZAPAM which my doctor said Bi could try.Folks I slept from12.15 am till 6am on Thursday morning.I couldn't believe it.This is in addition to the Pramipexole. Tried it last night and with the same success. It is worth a try (goodness knows anything is) hope you are feeling bait better now LOL Conchita.
I've been subscribed clonazepam be careful its very addictive also taking 3mg of repinarole I only take the clonazepam when I am struggling to get any sleep
• in reply toconnie50
Connie, how fast does the clonazepam work to help you sleep?
Does it do anything to help you with the rls and does it give you
a hung over feeling in the morning? Clonazepam is a muscle relaxer, sometimes used for anxiety..very different from a pain pill that works on all types of pain..knocks some people right out. =)
connie50• in reply to
hi the clonazepam works really quick but it makes you feel quite groggy the next day I only take it when I'm really really desperate for some sleep like last night I could have done with it but was away over night & only took enough repinarole to last me but it didn't work was up all night watching the clock going to get my head down this afternoon for a couple of hrs. If my legs will let me PS. my sister takes clonazepam for RLS but she will only take it when she is really desperate its very addictive so says her GP
• in reply toconnie50
It's addictive but usually doesn't become a problem if you are using it as prescribed, for the real need of getting the body to relax..
If it's used as a sleeping aid only, it can become a
problem fairly quickly ..if you used it 10 nights
in a row to sleep, you will be missing it for up to a
week after you try to sleep without the aid of the drug..
My neuro and rheumy told me that the powerful urge to move the legs is really pain that my brain processed differently..it's such a frequency of pain that my brain can't even register it -it doesn't know what to do with it so it tells my legs to move, to keep moving..but it does take another part of my brain to "make the legs move" so I have two parts of my brain..in different areas telling my legs to respond to the pain by moving the legs. It's as if that pain --that particular pain has a
pathway that medicine doesn't know about..it breaks through the usual medicines and anything that was ever made..
Seizures happen much the same way...the medicine that we do have can't go to the places that it needs to because they can't idenify quite yet where the pathways are and how to open the door to treat it.. The same happens with fibro..all of the doorways seem to be jammed shut so the medicine never makes it where it has to go to...
It's gotta be frustrating to try to make the nerves connect and reconnect and to find the way in...
What pain pills do is they go to the part of the brain,
to find the receptors of pain and they shut them down.. Pain doesn't reach the part of the brain that tells you "OUCH, or pull away, this hurts" but the pain force still rages in your body so hard, the pill is the stopper, the plug, if you will...When that signal is sent again and again and again the plug starts wearing down and eventually it's going to give -first a leak (pain breakthrough- then finally it will be completely broken..
so you add some more pain pills or pain medicine and the cycle keeps happening..that plug eventually breaks down until you reach the point that the dosage of medicine is maxed out- you will die if you take anymore.Michael Jackson reached that point..He was immune to pain pills so he turned to another method..
That same reason is why doctors hate to get you going on pain pills...some refuse..Once introduced, the body depends on them..there is little chance to lessen the dose if the body has tolerance..
As of now the best chance for relief is narcotic pain pills..what I told you up above is the only reason they are not looked at with favor..but they do take away the symptoms of RLS (or pain in that frequency) as my
neuro and rheumy both said...
You know me, I drill people for their stories and I ask them what makes them think this way or why they are doing something, what result they hope to get...all of those questions led me to get them to tell me their thoughts.. xxxxx Karen..ps, nope,I don't back down. =)))
Its sounds as if the ropinerole isnt working then, if you were awake all night. Maybe time to try a different RLS med.
I could never take clonazepam because of the long half life, i know i would be asleep ALL day....
• in reply to
I told her the same thing and I knew that the half life of clonazepam is long..it's actually going to work 12 hours or more even sometimes depending on how fast your body metabolizes it..If you don't know about half life, it's the length of time that the pill keeps boosting the desired effect.. Also she knows as we talked about he switching over to either an extended version of the current med (sorry connie, this probably won't be the answer because of that big dump of medicine at bedtime(immediate release)) and changing over to Mirplex (pramipexole) She may want to add a light narcotic to it so that her change over goes very smoothly... She can choose the regular or extended
version (slow release) of mirplex..The doctor may even choose to add a
gabapentin type of medicine to the pramipexole...Connie, you can choose what route you want to go but I am sure that nearly 100% of this forum would say to have a narcotic (like oxycodone or another like that) at least on call or
available in case your legs go nuts for that first month... I do hope that you go into the doctor armed and ready to find you some sleep...
We can try and try again when something fails us..almost all of us had to
play around with different types of medicine to get a grip on this RLS..
Good Luck and as always, I am here for you anytime.=))
You can change from Ropinerole to Mirapex (Pramipexole) without needing anything extra in the change over. as they are both dopamine agonists. Only when you come off the dopamine agonists that you need some support med while doing that. Adding Gabapentin to the Pramipexole could help just for the RLS, many take both of those, some just take one or the other, no knowing until its tried. Trial and error as always. Half life for Clonazepam i think is 40 hrs, that means half goes from your system after 20 hrs. Need to look that up on Dr.B website as i am not sure. If the Ropinerole is not working then its a waste of time taking it, things will not get better. Connie, you really need to change meds to get any sleep, and probably will not need to use the Clonazepam.
• in reply to
That's a long life for the "pam" drugs to last...I did not remember that..
I have never once switched over the dopamine drugs..
Ya sure do learn something new every day.. =) Thank you
Elisse..
• in reply to
I have switched from the neupro patch to pramipexole and back again a couple of times without any problem...
This is from Dr.B's website...
Klonopin/ Rivotril (Clonazepam)
Klonopin comes in 0.5 mg, 1 mg, and 2 mg tablets. The usual dose range is 0.5 to 2 mg. This was the first drug used for RLS and PLMD. This is due to its previous use in myoclonic seizures. PLMD used to be called nocturnal myoclonus and thus this drug was tried for RLS/PLMD with great success.
The drug has a rapid onset of action (less than 30 min) but it has a very long half-life (30-40 hours) causing a duration of action of 8-12 hours or longer. Daytime sleepiness can be a problem in a large percentage of patients on Klonopin. We therefore do not recommend this drug for most patients with RLS. It is, however, very commonly prescribed for RLS due to its early association with the treatment of RLS. It may work well in patients who do have morning RLS and do not get drowsy or sleepy due to the long lasting nature of this drug (which may persist at high levels in the morning causing daytime sleepiness).
Many physicians prescribe Klonopin, as this is the original drug used for RLS and is recommended by all the general medical textbooks that discuss RLS. Some sleep specialists (and patients) prefer to use this drug for RLS, but our experience has been that the shorter acting sedatives work better for most RLS sufferers
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