Restless Legs Syndrome
10,504 members6,494 posts

Concerned

I came across this site and it caught my eye as I also have RLS. However, some of the rhetoric in these conversations appear to be rather volatile. I’m not sure I want to stay here, but perhaps I need to hang on a bit longer to reassess. How can we help each other under these conditions??

The ability to reply to this post has been turned off.
44 Replies
oldestnewest

I personally haven’t come across those on this community but did on the weight loss one. I think people are people and we will always come across those who think they know best

I have had rls for over 30 years and still have no idea of triggers or cures. I am awake tonight not so much with rls but even at two in the morning the heat is intense. Whoever says our houses cool down overnight needs to live in my house in south of England. Always have to take extra cocodamol for rls in the middle of night. Heat just an extra factor

Stick around. Enough understanding helpful people on here to make up for those who are less wise

8 likes

Sorry for your situation,Liz. Could you try wetting a sheet and lying under it? It might cool you down a bit.???🤗

Even having it beside you might act as a fridge effect.

Hope you get some relief.

RN4EVER- I'm not sure this particular site is "volatile" - we do have many differing opinions, and we often question people closely, to try and ascertain their particular situation, in order to help them.

Rls is such a wildly different experience for each individual-- it makes for a complex forum.

I certainly have come across some obnoxious conversations in other HU fora, and have promptly left them.

"Restless Legs" hasn't succeeded in ousting me yet!😁

6 likes

Hi Liz... Another thing in addition to what Madlegs told you that helps me is a cotton kitchen town lightly soaked and wrapped around the neck. I do this during the day as well to keep me cooler as much as possible... Of course, that is predicated on the sweating being from head and face like mine... so may not help after all... =)

2 likes

Good idea as I tend to sweat on face and neck

Embarrassing huh? AND frustrating.... I wouldn't wish it on anyone. Mine just started out of the clear blue about 9 months ago... No idea why

I’m in America but I’m sure these are most places. There are a couple of different styles/price points of machines that blow cool air under your sheets when you sleep.

Google “bed fan” or “bed air cooler” etc. I’ve seen them as low as $110 USD, but there are some for hundreds of dollars. Perhaps ones cheaper as well. Not sure.

I keep telling myself I’m going to get one cuz of my menopause night sweats! Lol

I am surprised at your comments. I agree that some views are strongly expressed but I haven’t had cause to think that they are particularly personal or pointed. I think the robustness of some of the comments and the strongly held views make for interesting reading

9 likes

I don't think of it as volatile either. I get a bit upset at the dr bashing comments as I was one myself and it is too easy to make them the fall guys, but all the comments are borne out of frustration and extreme exhaustion. i have had several other medical conditions but this RLS is by far the worst in its severe form as it ruins your life and ability to function and the level of empathy out in the world is nil. There are also some god awful bits of medical advice out there which have made things even worse for people.

There are mainly 'good guys' on this forum, desperately trying to help each other and help to find an answer and some very interested researchers.

On this forum we also try to think out of the box as our solutions haven't yet been found.

I have never been on a forum before but joined as I too am desperate. I don't regret it at all even though my answer hasn't been found.

i joined another related to another condition I have due to the benefit found on this one. It isn't a patch on this one especially as the treatment etc is mainly solved there and folk are just expressing their anxiety, often unfounded, so I'm going to resign from it.

But this dreadful RLS needs an answer. You might be able to help us solve it.

5 likes

The "doctor bashing" comes from frustration, and most of us know that not ALL people think that of doctors. Mine is an angel, but she takes the time to listen to me and actually look up information and use the Clinical Management book I gave to her. BUT, people do have to remember that doctors are very busy, and having worked in health care, I DO get frustrated when a doctor will not admit they are a little in over their head, and then referrals to specialists should be offered and ASKED for. We are our own best advocates in the end.

2 likes

I agree completely that Drs should refer if they don't know and read what info they are presented with. And there have to then be enough specialists to refer to without causing waiting lists of over a year - believe me our local neurology waiting list is a year!

And then even worse, in order to save money before I retired GP's referral rates were scrutinised and monitored & one had to justify then and explain yourself. Anything above average was deemed bad even though underreferring can have serious consequences and referring outwith your region to a superspecialist was well nigh impossible

well, even the "experts" do not have the definitive answer. A support group is what this is, and it is good to hear that we are not alone, etc, but one cannot be disappointed that we have not figured it out yet. There are MANY diseases that have no answer, and there are many places on the internet that will promise you the moon, and we know right now, there is no real answer yet, and there never has been. WE have the same conversations sometimes that we had in my first support group on yahoo in 1996, so THAT alone is frustrating. I like to deal with facts and science, but sometimes the science just is not there for certain things. :) You know that, being a retired doctor. I am sure you had to deal with unhappy and frustrated patients being a GP.

But we can contribute to the science as sometimes folk are looking in the wrong place & no one has thought to look in the right place yet.

1 like

I have only recently joined this site and found the level of advice exceptional and very kind.

8 likes

Can you maybe highlight some of this volatility you have found?

There are a number of RLS sites out there so might be worth checking them out to see if another might fit you better.

It is only normal that people with long term harmful conditions like ours bitch and moan, and as Alison7 says the Drs get a good oul bashing, (guilty of that myself). I assume that this is predominantly frequented by adults and as such we should be able to deal with a few words on a screen. I have had a number of people accuse me of being horrible and then go on to say nasty things about me only to fail to point out where I have been horrible or indeed ever post again!!!

My advice to any adult reading MY posts is to see the humour or frustration in them and understand or ignore. That works with a plethora of annoying issues :)

Madlegs1 - you challenging me? :) :p

9 likes

Ah Raffs! What's up with ya!! You're like an itch wanting a good scratch. Maybe the 12th has got ye down??

If RN4ever ( now there's a right Royal moniker designed to incite volatility in some quarters!🤣) thinks our little spats are offensive he needs to realize that the Irish fight like Kilkenny cats among themselves, but will band together like brothers against any outsiders.

How's the lettuce eating going? I'm assuming life is a lot better, cause we haven't heard as much as usual from you.

Cheers.🤗😊😁😎

8 likes

That reminds me of when I went into labour with my first child in the early morning of the 12th. My mammy said “Don’t you dare give birth today”.

I gave birth 30 hours later on the 13th. My daughter is of course now the favourite grandchild!

No one outside of Liverpool, Glasgow & Ireland knows what the heck we’re on about!

3 likes

The one day of the year the Irish pray for rain!!!!

2 likes

Not going so good at the mo with the ME leaving me as throughothersome as an Irish summer. I had a bad night with the legs last night - a Chinese treat that wasn't such a treat.

3 likes

That’ll be the MSG- guaranteed to get those legs marching.

Never even thought - the good lady wife was going out so thought it would make a nice change from the lettuce and bay leaves I've been existing on, I'll be on water and air before much longer.

1 like

As jools says- msg is a blx.

Mind yourself.👍

1 like

I don't think we need to highlight the "volatility" and rehash it. I see this post having hundreds of replies if we do that? How is the lettuce eating going? LOL

1 like

I had a great thing going - I would have a big plate of lettuce then smother it in steak, chicken and coleslaw. But according to my know it all wife that's not vegan. I'll remind her chocolate cake is not weight loss food the next time she diets.

2 likes

I’ve only been on here for a year but have found this site to be very helpful. I’ve had rls since my teens before there was a diagnosis, it got worse during pregnancies and horrible after menopause. I’m 65 now and this site has helped in several ways, including treatment options, getting me through augmentation and learning my triggers. I have had unsympathetic doctors in the past but not now, thank goodness. If you came here looking for help, I’d suggest reading the files and following posts. This has been the most helpful and comprehensive source I have found in my 50 year journey with RLS.

7 likes

Hi, I wouldn't describe this site as volatile. I haven;t been on it long so it may be because I haven't come across it yet.

The main thing I've got from this site so far is information that I hadn't known before. In my case I didn't know that some of the medication I'm taking for other condition is known to make RLS worse.

The second thing I've found is that it's good to hear other peoples' stories and to realise you're not on your own.

It's also good to hear how some people have dealt with particular issues which their RLS has raised for them, which aren't normally dealt with by medical practitioners.

On the negative side, although the motivation of some contributors is clear. They want to get or give information, to share experiences or support others by giving them the benefit of their experience or simply give good vibes, sympathy or empathy. The motivation of some is not so clear. Maybe it's just it's just a lack of communication skills and not realising how they might sound, but I find them sad, patronising and insulting. E'g' I recently had a reply which started FYI - for your information and gave a fairly lengthy paragraph which did actually give some information but, in TONE, I translated it as "didn't you know this - you're stupid, everybody knows it."

I do use other similar web sites and you get the same thing there. My theory is that they are trying to make themselves feel more important by demonstrating that they know better than other people. Or they have limited real communication with people outside the web site. You could extrapolate this to lack of self esteem and basically selfish motivation. My emotional reaction, (I am a bit volatile myself) is to think of them as D---heads. But I don't say that. I may also be very wrong perhaps they just don't have any self-awareness.

The other thing is that RLS does affect the quality of your life to varying degrees and it might be an emotive subject for some and they might, due to the emotions it provokes, overreact to some things.

Finally, some contributors tend to forget that contributors may be living ANYWHERE, we don't all live in amerika and what's appropriate in one country might not be a possibility in another.

It's your choice really, can you "dip" into it and concentrate on what's positive and ignore the negative or is it so negative that it's not for you.

I have recently used three other such sites. One I went into with a specific technical problem. People tried to offer a solution. None of them worked. I found the answer myself and no longer need that website so left it. Another is a cancer site, I have had cancer myself and also have a health professional background. I currently have a voluntary job in a cancer advice and support service. Most contributors are supportive on that site even if they can't offer information. I have been on it for year and have exchanged with people from USA, UK,Pakistan, Australia etc. I gert a buzz form it becasue people thank me or I just feel I have been supportive. Another one I've been on, contributors had labels or tags like "Regular Contributor" or "Distinguished sage" presumably because of the length of time they'd been there or how many comments they'd made. I quickly found that the higher up this hierarchy they were the more patronizing they were and in this case it was "Get a real life and goodbye".

I'd say give it a chance and if you find the D---heads outnumber the genuine response, leave.

3 likes

Tone is hard to read in the written word. Your first paragraph is right on the money, though. As I said in my comment, we are all sleep deprived and some are very frustrated. Besides RLS, I am a chronic pain patient, and those groups get very nasty some days. I am an activist with "war on drugs" in the US, which is spreading, and people cannot get the meds they need at times, and that is not good for morale and moods and attitudes. So, whether it is pain or RLS or many other chronic conditions/diseases, people do not feel well, and exhausted brains sometimes do not express things the way they should. And, we tend to get a little antsy when someone brings up something that has been talked to death, when you can search for similar posts in the search box, just another way to find an answer sometimes. I am a 2 time cancer survivor, I am a volunteer pain consultant for the Pain News Network, and have been managing groups for 28 yrs for RLS. So, things can get a lot worse than anything we see here. WE DO get upset when rules are broken, or someone is trying to profit off of our misery. THAT is never allowed.

4 likes

UGH, I hate those sites that use tags. But, it depends on the context of the "FYI" posts. One person's translation of that can be another person's sincere attempt to get some reliable information out. Sometimes, it can be over used. IT depends on the context and who you are answering, and what the subject is in my opinion. :)

1 like

If someone said FYI to my face I'd read their motivation from their tone of voice and body language. You know this. You also know that written words provide no such clues. Generally speaking, not many people say FYI to me. Those few that have were putting themselves above me. So, Yes a matter of interpretation, but based on my experience and lack of cues it doesn't go down too well. Especially when yo u know absolutely nothing about a person.

I have used FYI. I have never used it in order to be condescending. I had no idea it could be offensive! It just means " information for your consideration." For me it is shorthand for I heard/learned about this- give it a try, or thought it might help. So if anyone sees this in MY posts no harm intended! Just support. #kindnessmatters

2 likes

Hello 3labs, thanks for your insight. I originally replied to RN4ever's post about rhetoric and volatality. In explanation - I responded with my own opinion and my own experience. I believe that's OK and appears to be what other responders do. The consequent comments on me using FYI as an example of what I find offensive, in a particular context, have been attempts for me to alter my perception of this . That's OK, I accept that my perception is just that, MY exception and it's OK that others may have a different perception. To some extent, I enjoy such debate. Thank you for responding, it's good to know that someone thinks it's worthwhile responding to me.

However, whatever a person's perception is, then it is valid and should be respected.

This was brought home to me some years ago when I was discussing an incident in which I responded in what I thought was a reasonable manner and was told I was bullying. My defence was that I didn't intend to be bullying but was told, if the person felt I was bullying, then I was. I didn't readily accept that, but have come to see that there is some truth in it and have tried to act accordingly.

So basically, if I find using FYI (in a particular context) is offensive, then it is offensive, no matter your intention.

Additionally, comments have been focusing on the "FYI" out of context. It's what follows that also affects the perception and it's also the lack (in the absence of non-verbal cues), of any indication of the intent. It's also perhaps the position of the "FYI" in the text.

Compare -

"FYI, contrary to what you say this web site says this and lots of people agree with it."

To

"Hi Timzz, here's some information which I hope you find helpful, FYI - - - "

Actually, FYI isn't necessary.

I hope you noted that my response to RN4ever's concern about this web site was largely positive and also intended to allow him/her to make their own choice, and was intended to be respectful of their perceptions. I hope RN4ever felt that.

Finally, I do try to practice what I preach, but in moments of just being human, I lapse, being far from perfect. Alternatively, I used to think I was boastful, now I know I'm good at it.

Thanks Timzz! It's really important to me to understand how others think and perceive things. I appreciate your comments. I find that sometimes when I am utterly exhausted from continuous lack of sleep and the resulting brain fog I find it difficult to live outside of my own head. I am trying to do better at this. Maybe this will be my goal for the next few weeks- to force myself to look outside of my night time struggle! Wish me luck. I hate dreading bedtime! Wishing you peace!

Well, that is your "perception". No one here means it as anything else. It IS used a lot and not for nefarious purposes. i think this subject HAS been covered now, so let's move on to helping each other. This is not helping the original poster, and I think all that has needed to be said to explain how you feel about it, Timzz. :) OK? Let's move on, We get the idea. Glad I could help you on the other post about that medication and the "Drugs to Avoid" subject.

1 like

I hope you stick around. I have been a member here for quite some time, and have learned so much about this awful affliction from other members, and it is such a lonely condition. Most of us are knackered most of the time, and occasionally seem crabby, but I have never come across anything that was upsetting enough for me to leave. We need each other to bounce ideas around, as what works for one person doesn’t for another, there seems to be so many causes of rls.

4 likes

I'm assuming your "volatile" description was perhaps an autocorrect error, and you really meant "violent"-- and it certainly contains a lot of violence, referencing Alisons' comments.

Rls is a very violent syndrome and atouses extreme emotions in sufferers--- even to the point of suicide, especially where such medications as Amitriptyline, have been misprescribed.

Anyway, enough ould guff from me, I have to go deal with that ruffian Raffs.😅

4 likes

:) :) Oh that ruffian Raffs! LOLOL

1 like

Surely ‘Raffian’?

1 like

Ahem I am the Raffinator - I'm a friend of Sarah Connor. I was told she was here. Could I see her please?

2 likes

I have only ever found this site to be helpful and the people very positive despite living with such a foul disease.

I would not have survived Augmentation and withdrawal from Ropinirole without the help of the knowledgeable people on here.

I suggest you stay around and observe the more positive posts and simply ignore those you don’t like. You’ll grow to love it.

8 likes

that happens when you have over 10,000 sleep deprived people in one group. And, people are desperate for help, and no one thing works for everyone, treating RLS is all trial and error. ANY LARGE RLS group is going to have "rhetoric". That is one reason I have smaller groups and keep one under 500 members. RLS is frustrating, and when someone is sleep deprived, things will be said that can be taken the wrong way, or sometimes the person is sorry later, but at the moment they post they might have been up for a week. Sleep deprivation affects our thinking , our mood, our common sense sometimes, and so on. There are people from all over the world in most groups, too. Sometimes it is kind of a language barrier. etc etc etc. If you have RLS, I am sure you can understand that. This is the forum connected to the RLS-UK Foundation. Trust me, there are much worse places to be. :) Also, this forum uses screen names, so is kind of anonymous, and that can be an issue when people think we do not know who they are. it is the nature of the beast! :)

4 likes

Its a good job the yellow demons keep my paranoia in check or I'd think you lot were getting at me :)

2 likes

AND, people can say the right thing the wrong way sometimes. if we all keep in mind that we are all suffering here, it will make things whole lot easier for you. some of us have been here since the beginning, and sometimes the same person will ask the same thing over and over and over.........

5 likes

WHO THE F**K CALLED ME VOLATILE?

Sorry just had to do it. :) :D

3 likes

I do have a question for you, which I forgot to ask. have you ever belonged to a huge support group/forum? 9,803 members from all over the world ARE going to have "lively" discussions. People tend to get upset about little things sometimes, but it dies down. I only get "volatile" when someone tries to profit off of people in any group for any disease, never mind RLS. When someone says they have found the cure, I will admit we will get a little more "lively". This is the way it works in a big group, and it has been much better the last couple of years than it was 4 or 5 years ago. It was downright ugly for a while, but it got better, people learned more, got to know each other, and so on. I could show you some nightmare groups that I help with elsewhere. This is MILD. :)

2 likes

Let us move on now to helping each other.

Thank you.

2 likes
The ability to reply to this post has been turned off.

You may also like...