I just wanted to convey what I think this forum should be about, if you all don’t mind please?
I feel this forum is to provide support, companionship, appropriate advice and direction to those struggling with this awful condition RLS.
I have noticed that at times there have been rather critical comments made, not necessarily meant to hurt, but nonetheless tactless in their replies to others posts.
I think we should all be respectful of each other’s feelings when we post. If a post expresses sadness, pain, desperation, humour and satire, so what! That’s upto the individual and they are entitled to their “take on things” as RLS is personal to each one of us.
Let us all please support each other not be a critic. I always say “we can’t walk in another man or woman’s shoes” so please, live and let live. My mother would’ve said “if you can’t say something nice then say nothing at all”. Good advice I reckon.
If you feel something is not correct and really needs to be discussed, then private message the individual rather than getting into an argumentative thread on the forum, which encourages no-one.
I enjoy very much reading others post when I am roaming the house in the dead of night struggling with RLS, if I see something I don’t like or agree with I simply don’t continue reading it, it’s really not difficult to be a nice person, if we just consider others feelings before our own.
I hope no one minds my little post, but if you do, then send me a private message!
20 Replies
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"If you feel something is not correct and really needs to be discussed, then private message the individual rather than getting into an argumentative thread on the forum, which encourages no-one."
IF we were to follow that route we would be having a forum with erroneous, possibly dangerous information on it and no rebuttal! I don't think that is either useful as a means of learning OR of support.
Certainly there is no need for arguments and certainly no need for abuse - none at all, but it is not only important, but vital that incorrect information is corrected on the open forum.
That is what forum are - open spaces where information and views are shared and where the the best logic and knowledge of the day is shared and challenged.
I just wanted to convey what I think this forum should be about, if you all don’t mind please?
I believe this forum should be a place where all info pertaining to RLS is discussed and disseminated. I think that where there are treatments being suggested with no known efficacy for RLS outside maybe placebo that they should be very quickly labelled as wrong and potentially damaging, either to the person or the important cause of increasing awareness, understanding and acceptance of our condition.
I think we should use humour and that humour and right to humour should be protected from those who need to be offended - a joke, is a joke, is a joke (that's a meta joke for you right there folks!!!). We have so much suffering that a smile can be a God send (many on here experienced that) and should any of us not like the joke, we are all adults and should ignore it!
I don't think this should be a place where limitation is put on us OTHER than not to deliberately harm others - as we see in today's toxic atmosphere that PC can be used to oppress the views of others.
NOW! That all said I bet there will be a heck of a lot more on here with their own view of how the forum should be.
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Well you can’t please all the people all the time!
Just thought I was helping, obviously not 😢.
Guess it’s a steep learning curve understanding “forum etiquette” for all of us.
I ain’t perfect, so sorry 🥴 but I will keep trying unless I get a “red card”.
That’s life 😬
• in reply to
Actually you were helping as you have encouraged talk about how to do things - sometimes we miss something important looking at things one way, another set of eyes can help see what you miss.
No need to apologise, you done nothing wrong...but I'll accept it anyway
Some people will agree with you, some people won’t, but what is crystal clear to me is that you have a kind and generous heart, and you’re observations and suggestions were made with the best of intentions.
Bless you.
Thanks for posting that CrazyLadyLegs.
I completely agree with your sentiment.
I do however also agree with raffs and sometimes feel compelled to point out where I think posts are misinformative, dangerous or are promoting what appear to be scams.
Not that I claim to be perfect either.
I totally agree, well said. I would however like to know how to private message, I didn't realise there was that option.
• in reply to
Just tap the picture on the post you like and the private message option comes up.
Or tap the icon with the two "speech bubbles" (next to the bell 🔔 icon) at top of screen. 👍
I am not 100% clear about what your post meant but I feel the need to clarify my original post.
All I meant was that in my humble opinion we should not be overly critical of others posts with the style and words they use to express themselves.
If a person posts a message about how they feel due to how RLS personally affects them, whether their post is sad, angry or full of humour, that is their right. I just meant we should not be dissecting every phrase they write.
Of course if someone posts advice, medical or otherwise that is incorrect, then of yes of course it should be corrected openly, but in a dignified, respectful way. Why would we want to belittle a fellow sufferer, surely we want to encourage and support each other? This is not what I would class as “sugarcoating” something.
I am simply saying that if a person wants to express how they FEEL about THEIR situation, we should dignify them with the opportunity to do so without feeling they have had their post “scrutinised “ like an exam paper.
After all if we don’t like their post, as long as it does not contradict the forums rules, then just let them have their say. We are all entitled to an opinion on OUR OWN circumstances without the fear of being judged by our fellow forum members.
• in reply to
Again, I quite agree.
There are shades of ---
well any colour really, grey has changed its meaning
I agree that people should feel free to express their feelings, have a bit of a rant, etc without being criticised.
I don't think bodziu was being critical.
I did make a comment recently about language, (NOT bodziu's), which wasn't intended to be in any way critical, but might have been interpreted that way and overall didn't go down too well.
Various members told me they disagreed with both what I wrote and the way I wrote.. That's fair enough really. Nobody was abusive and they made their point.
Tongue in cheek, I am unrepentent. I stand by what I was trying to say. My intentions were good.
If someone's abusive you can report them, click on "more", then "report".
Sometimes there are grey areas, two members have recently made sarcastic remarks to me, which I find offensive, but I didn't report that and a third said there's always one of "those guys" on these sites and I was the"one" for this site. I didn't report that either.
These remarks were personally offensive, reflecting not just on what I wrote, but on ME.
That, I think is unacceptable.
But then, I may just be rambling. It's allowed.
I think that by insinuating that CrazyLadyLegs has something wrong with her just because you happen to disagree with her perfectly reasonable and well presented opinion , rather proves her point.
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Thank you Bear, I appreciate your positive and kind comments. It’s nice to know some people understand what I am trying to say and do, without feeling the need to belittle me. 🤗
I totally agree, I’m very new to this forum & so far have received nothing other than complete support. But I have seen posts from others who say they have received criticism for some of their posts. I am not here to judge anyone, I’m here to support, be supported & learn as much as I can about this horrific condition in the hope that the medical profession will catch up & take us seriously.
I am the husband of an RLS sufferer and have been reading this forum for a couple of years. In that time we have learned much from the postings which is greatly appreciated. I too have noticed over the time there are posts which I frankly gloss over as they have no value in understanding the disease or the suffering it causes.
Thank you Bobee. People who live with RLS sufferers often are overlooked but you all suffer with us, so I say a huge thank you to all partners of RLS people, you support us and often keep us sane!
I have started a new med today and hope, given a couple of weeks I will see some improvement. I hope you find some respite too.
I totally agree with you. We who suffer from this horrible and at times debilitating Syndrome don!t need anything else to knock us down!
I know all the years I have spent the entire night walking my thoughts are not always clear and I hope all of you would understand if I posted something that may be inappropriate with all of us being RLS sufferers!!!
When I first started having symptoms of RLS
no one had ever heard of it. I had to educate my Doctor and my Chiropractor. Everyone in those days blamed everything on menopause!
It felt as if we were living in the Dark Ages!
Because we didn’t have a name to call this horrible thing that ruled my life and it certainly took its’ toll on my Husband and our four Children, we all called it Crazylegs. We still call if that!! I hope we all find more sleepful nights this year and do any of you think they might come up with a cure or at least a drug that actually works?
I have been meaning to post what I take now after trying everything that supposedly helps the last 40 years. You wouldn’t believe all the crazy things I have done and all the drugs and spices I have tried. I am now on a drug that finally helps me get a pretty good sleep on most nights. Unfortunately, I have insomnia also and nothing works fix that for me. My amazing doctor has me on a slow release drug called. Hydramorph. I have been on it for two years without having to increase the dose after going through years of Mirapex, an absolutely horrible drug with the worst side effects.
Of course when I was finally told about
Mirapex I didn’t even ask about side effects and i didn’t even care. I finally had something that got rid of my Crazylegs! We all know how this story ends. I had terrible augmentation!
None of the drugs that we have all tried
worked for me, even Tramadol!
I talked to mv Doctor about going on Methadone
because I am worried that one day I may need to increase my dose of Hydramorph. I have an appointment in February to go to a Clinic where
I will be evaluated. I am so blessed to have a Doctor who reads all the information about RLS that I bring to her. She admits that I am the “expert” on this and I am teaching her.
I can’t believe how I have rambled on but it is so refreshing to share stories with all of you.
You have obviously had it tough for many years whilst bringing up your family, well done you! It can’t have been easy for any of you.
I have not heard of hydramorph, I guess it’s a morphine based med? Is that available in the U.K.? I would love to sleep at night so I am always considering what meds are available to help me sleep.
It’s great you have found something that works for you and if it avoids augmentation, well that’s awesome.
I too, feel I am educating my doctor as she admits she knows little of RLS. I guess in time, I hope like you, that the medics will finally understand and properly recognise RLS and the suffering it causes.
We definitely need encouragement, support and help from each other.
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