Sorry but I'm just going to have to say it, they're are some really pompous and over baring posts or replies to posts on here (RLS), most are genuinely helpful and informative,in fact even some of the pompous one's but sometimes just feels certain members are trying to outdo each other in the know it all department,there,got it off my chest 😁👍
Pompous: Sorry but I'm just going to... - Restless Legs Syn...
In the words of Manuel of Fawlty Towers fame “ I know nothing”. 🤭
Seriously though, I guess my take on things is that everyone (hopefully) is on here to help, or be helped. I try to pick out the positive things being said and let the rest flow over my head. I think perhaps it’s a personality or background thing, that affects people’s way of responding, so I suppose we have to “live and let live” . Hard I know!
I personally get a lot out of being on this forum but I know at times it can test our patience when things get a bit “awkward”, for want of an un-provocative word.
But well done for speaking out, it takes courage to do so when you know you may be criticised for it. Having RLS is a difficult illness to live with without having to deal with unnecessary unpleasantness.
Stick with it though, as there are some very kind, helpful, understanding people on the forum and that’s what we need.
Sorry to hear you have that perception.
I guess if some members spend a lot of their time trying to respond in a helpful way, sharing what knowledge they have and researching and finding out more to answer other members specific questions in detail then that might be seen as pompous.
Perhaps there are aspects of such members you aren't aware of. Perhaps their past careers have been a long history of helping people professionally and they have continued to do so in retirement, not just on this site, but on other sites, e.g. cancer sites and by undertaking voluntary work in the community, by acting as patient representatives in NHS engagement groups etc.
If you only see the tip of that iceberg and perhaps feel such members are fortunate enough and able enough to offer more than yourself you might understandably feel that they are therefore showing off or competing,
Perhaps, however, it's something that comes naturally to them.
There is no need to feel you are in any way a lesser person or that you are of any less value.
I believe anybody is entitled to share whatever their views are on this site are. That is unless that those views are personally abusive, offensive or simply sarcastic. It should also be accepted that maybe those views are inaccurate or that not everybody's going to agree.
I do come across posts on this site that give inaccurate information, or suggest apparently dangerous things or use sarcasm in an offensive way. My view this is far worse than appearing pompous. When this happens, not always, but sometimes I make my view known to the person posting the apparently offending material.
I accept I'm not always right.
Maybe I'm wrong or maybe the member didn't realise their misinformation, danger or think it's acceptable to be sarcastic towards other members. If it's never pointed out, then they'll never know.
Since most people on this site suffer RLS, I'd hope we'd also give each other a little leeway, we aren't all equally knowledgeable, or able, we can all make mistakes and many suffer the consequences of sleep deprivation
However, I think it helpful and more assertive, if you perceive anyone as being pompous then you point it out to that person directly. More importantly so if you think they're doing any harm.
Perhaps, taking a general sweeping statement without naming anybody isn't the best tactic.
It's OK to get things off your chest.
There, I just did it!
You it would be so easy to step off a site like this once you find something that helps you .and we are in the right track for us
But Manerva it is one sentence that you said that potential saved my life when I was desperately sick in hospital and even my daughter posted in this site out of sheer desperation.
Your sentence sat in head that was so full of drugs I could remember nothing but your words and I kept repeating them .
You said What has changed ? I though and thought and researched
And bingo I found it ,it was the metformin it I had a severe rare side effect , neuropathy and acidosis.
We never know what words from our experiences may help just one person or even save a life or save a person from suicide . RSL is horrendous in its self ,so many people on here have more than that going on we are all doing our best in our own way .
So thank you for always being her for everyone . There is only one thing we can really give to one and other and that is time . thank you from the bottom of my heart for your time 🌸
So if Alyson 66 is having a go at me I don’t care I’m glad to be alive due to the love support ,thought provoking comments informative stories I have been able to print off and show my doctors from this site .
Our journeys are certainly not all equal but Jove they are not easy .
Sorry not buying this!
I've been on this site for several years now and have spent a lot of my limited precious time trying to help others. I have yet to see any pompous posts from any of the long time posters who post valuable info, in fact I don't remember any pompous videos from anyone offering anything more helpful than soap!
I have been accused on at least 5+ occasions of being nasty, or of making hurtful statements but when I ask the person to point out the offending bit they normally disappear off the site never to respond to my question but happy to make false accusations - it is very frustrating when a coward makes a false claim against you only to skip town when challenged leaving the allegation hanging.
As with the real world - anyone feel free to comment - if you are going to make an accusation you need to stand over it and explain why someone is as you accuse.
As mad legs said - 'Please name names!'
I think all too often people, maybe sleep deprived and not thinking very cohesively, make complaints about people here with little or no evidence. It would be much more 'helpful
' from now on if people are making accusations - give the FULL details and allow the others here to see if someone is as 'pompous' or whatever as one believes AND wait and apologise if you are wrong before leaving the site in embarrassment or mock outrage.
IF you (you as any poster not necessarily the OP) cannot do that then it is better to keep comment to yourself until you have evidence or (most likely) realise you have taken something up wrong.
Sorry but I had to get that off my chest as this sort of nonsense pushes me away from this place and I find the help and the ability to help invaluable.
Right on Raffs , bad enough people can’t sleep from RSL , now I can’t sleep thinking about this 3 am 😐
This site correlates so much data that is invaluable and sometimes someone makes you smile with a poem or a joke which lightens the mood . I don’t think there would be a doctor in the world that has so many patients with all this information. Gosh we would be a good crowd for clinical studies .
I must admit I have never seen pompous on this site , but then I am not judgmental type .
Love thy neighbour!
You say false accusations,you say little or no evidence,how do you know?that is your own opinion just generated by your own perception with no input from anyone else.I applaud your confidence where you believe you are totally in the right and only your opinion matters,you also automatically seem to assume other people are in the wrong and would definitely have to apologize once shown the error if their mindset! Also why would I have to name name's at your insistence?my post wasn't designed to shame anybody,it was just a observation at most but it would seem I've inadvertently touched a nerve,a few people have taken it extremely personally,I wonder why? Peace out 👍
"You say false accusations,you say little or no evidence,how do you know?that is your own opinion just generated by your own perception with no input from anyone else.I applaud your confidence where you believe you are totally in the right and only your opinion matters,you also automatically seem to assume other people are in the wrong and would definitely have to apologize once shown the error if their mindset!"
No Alyson66. AGAIN as I said to so many others - please read my post correctly - that was referring to what I (me, myself and I - no one else did I speak for) experienced.
How do I know? Please read my posts they are the ones where I am accused of something and then they pop up hidden as they delete their account and move on when they are embarrassed about their mistake. I was always taught to admit, own and apologise for my mistakes, particularly if I have made a false accusation.
In UK and US law (and I am sure many others) there are provisions for defending yourself against those who make false accusations, are you saying I should allow people to accuse me of whatever is in their own heads and accept it? Funny I have to accept that, yet people who you state are pompous ("I applaud your confidence where you believe you are totally in the right and only your opinion matters")
"Also why would I have to name name's at your insistence?my post wasn't designed to shame anybody,it was just a observation at most but it would seem I've inadvertently touched a nerve,a few people have taken it extremely personally,I wonder why? Peace out 👍"
You need do nothing at my instance, if there were anything it would be to ignore me - please.
People have taken it personally because they care about this place and what goes on. They have much to owe this site, those who run it and those who contribute. They don't see these pompous posts (although the one I am replying to has to get my vote for most pompous vote) and would like to know which ones they are. People here like me, who spend lots of time giving advice, support and hopefully a laugh, want to make sure they aren't the ones annoying people - they care. If you read through the replies to you accusatory post you will see these people state so.
Your reply to me is full of barely veiled passive aggressive nonsense and accuse others of being excessively annoyed and present this as your evidence that you were right ("I applaud your confidence where you believe you are totally in the right and only your opinion matters")
With regards to your reply to me, I present that as evidence that you not only have no pompous posts to present as evidence of your mock outrage. You claim it was just an observation, if so why feel the need to share that observation? I don't notice you posting many observations.
I would also like to direct you to the replies - yours is the only one making this claim of pomposity and in fact many explicitly disagree with you (although you seem more fit to single me out). I think you could do well to look at what you are seeing in these posts and why. You seem to be seeing something no one else does.
Can I ask are you the retired GP? Its just that in all your replies here, your reply to me is the only passive aggressive one. I've had problems on here with a retired GP I have rubbed up the wrong way for some reason she wont tell me.
Its just I think she was calling herself Alison or some such like. I haven't the energy to check it out as the posts she made were difficult and indeed pompous (so there you are right that woman has made some pompous posts but best I can tell only to me). I am not accusing you of being her either, just double checking. I can tell you that on a couple of occasions in dealing with her I had almost convince myself to delete my account. It was only the love and support from the lunatic Madlegs1 and the ever ready and supporting Manerva and all the others on here who have helped me through some of the worst times of my life that stopped me from leaving (you all know who you are I can't name all Joolsg Elisse, Pippins2 and so many more). That is why I was quick to call no to your post. It is posts like that, more than any pomposity that cause people hurt and to leave (IMHO).
How can you be bothered to be so bothered?talk about making something out of nothing,I've said all I want to say and it's clear and direct, nothing passive aggressive about it,you sound incredibly paranoid and obsessive and yes, really really pompous,I'm not continuing with this narrative,it's a waste of my time.
I think its unfair for this type of post, names cannot be made as per rules. When people post and leave comments then thats the time for other members to give their opinions on agree or disagree with whats being said, if they have a problem with someone's comment then that is the time to say so. Posts like this just upsets members as they dont know who its pointed at and then get paranoid if its them its about. And i had to get that of MY chest.
Just seen this. Ouch.
I don’t care whether anyone is pompous- as long as they are offering advice I’ll take it.
This site was lifesaving for me during withdrawal and it’s clear most members are incredibly generous with their time & advice.
The only time I have a problem is when people believe only one route is the right route ( usually alternative meds/diets/etc).
I also get very angry at the ignorance of the medical profession who refuse to do their research and cause unnecessary suffering by failing to deal with dopamine agonist augmentation and safe withdrawal.
But.... a good rant is cathartic when tired & irritable although it may have been kinder to deal with it through the administrator.
My own anger and distress about the years of life lost to pramipexole came tumbling out last week when I saw my doctor. I could no longer prevaricate, and it was a very difficult consultation.
He really listened, and had the grace to be almost as upset as me.
Every doctor knows that pharmaceutical companies massage the results to suit their pockets, so why do they not do their homework in the way that doctors had to in the past? There is something so rotten about the system.
And do they ever, ever, report adverse effects? I doubt it.
She seems to think RLS is more of an inconvenience! I have very high blood pressure, which does concern her. I was trying to explain that it probably comes from never sleeping more than 3 hours a night. She just says that Pramipraxole is the best treatment for RLS and if I want to stop it - then go ahead. If it hadn't been for this forum, I would have stopped it immediately. Then what???
I also have high BP, which I believe developed from the relentless stress of insomnia.
Does your doc know about augmentation, and that it happens to up to 70% of us?
Or that the first-line treatment these days is gabapentin/pregabalin because of augmentation?
You should return to baseline after pramipexole, so they say, but it is very hard to do. Without methadone I could not possibly have done it. I tried twice - it was such an appalling experience that I gave up hope of managing without help.
As an RLS sufferer for decades, I've recently come to the conclusion, at least in my case, it's related to pain. Specifically lower back pain, but not exclusively back pain. It seems when I can get my pain under control, the legs shut up. Easier said than done I know - with the powers that be withholding pain treatment from everybody. I also wonder how many people are in constant pain w/o even realizing it. Like, a certain level of pain you've come to accept as normal. Anyway - just my thoughts at this time.
This site and this group of people have radically changed my life for the better. They have taught me, answered dumb questions I had and semi-smart questions, too. I have found no one pompous. And I have a nose for pomposity. I have found people who are detail oriented, people who have researched A LOT, and people who have shared what has worked for them or not worked for them. The thing about RLS is the maddening mystery of it. So we all grapple passionately with ideas, treatments, and share our small victories, and crushing defeats. Because some remedies work for some people and some things work for others. And tragically, some may never get relief. Again, this brings passion and emotion. All that being said, we welcome you Alyson:). Most sincerely.
This site has been a life saver for me. There are people on this site who have given a huge amount of time researching this evil syndrome and I thank God for their knowledge and their willingness to share it. I read the content rather than how it is written. Pompous or rough and ready - I couldn’t care less. Just thank you for the support
Very interesting the reason my recent messages have been honest and and long is because I get a lot of private messages asking me a lot of questions . And I spend a lot of time answering messages at night
As I was last night for instants I was still answering private messages at 4 am for people on different time zones who need help right there and then so I feel putting a good detailed message so people can and have been printing off to use for there doctors is to save me sometime .
I was nurse for 9 years UK in my early years , I have 5 family members with RSL people and don’t mind helping people however I also have a 40 year old handicapped daughter that takes my time .
I have no issue not helping people Ive got plenty to do .
But on a good note some of my private messages last night were from people who have finally getting good nights sleep and relief from RSL from seeing my posts and seeing Dr Brooks and changing meds.
Those people reading this know who they are , so to you people don’t be afraid to private message me as all your questions are valid and I am glad that I’ve been able to help you
I knew nothing about this medication until November , this was very difficult to find a hell of a lot of work has gone into this and it simply could not have done without jumping on a plane from hospital beds in Australia to hospital beds in the USA
From spending time in the john Hopkins institute etc , I ave certainly been through the ringer as we all do , and am so very gratefully to my husband and family who nursed me from February to November when I honestly thought I was dying I dropped 15 kilos with no change of diet I was in a very bad way .
Interesting enough I have been racking my brain on how to set something up amongst us so we could support each other In particular those who can not afford to get the right treatment . I had actually asked my husband to pay for someone on this site for a phone conference with Dr Glen Brooks because they had lost there job and had no insurance.
He said we could not help everyone fair enough .
The last person we helped now has 2 weeks to live he is from Scotland but lives in Australia and was devastated at not being able to go and say good by to his family in Scotland . Long story short we worked it out he had his wish , We also have brought his twin brother out to stay until he passes .
I have am a trouble shooter a thinker . I do not judge .
and if you think it’s about money , money it is for doing good with . And I am sad I had to sell up my companies because I could not continue due to health reasons . My business supported a lot of beautiful people and there families and has allowed me the finances to source this answer and others on this site have already benefited .
Also the reason I told my story was I found when dealing with the many doctors I have been treated so very badly to the point that I have had to put in official complaints because the thought of the next patient with RSL or perhaps and elderly person being treated the way I was treated made feel sick to my stomach and every time I read of a person on this site who does not have insurance a job or access to the right help for them my heart breaks for them .
When I have asked my husband to help some people on here I have cried when asking because I know how absolutely insidious this disease is and I feel there torment .
Money or no money our intentions to help other must be pure
Money is for doing good with !
I don’t have to out do anyone as I ONLY have experience in my own medical journey .
There are people on this site that have far more information to share than I will ever have and for that I am so very very grateful .
I don’t need to be here at all !
I now sleep like a baby and my hope that others who have exhausted all options now no there is yet another option that I had not heard of .
I could shut it down and walk away and hardly anyone would know about this one drug buprenorphine option it’s the only thing I know about , so I can’t out do anyone nor would I ever wish to its not my mentality .
In fact I am a soft gentle soft woman a mother of 5 cubs I raised alone but a tough business women I had no choice .when presented with the challenge of 2 sick children 3 others no husband no money . Perhaps judging is pompous
We are all equal we all have one thing in common RSL we are here to help each other .
Anyway I am off to help my lovely girl of 40 who was handicapped from the whooping cough vaccine at 3 months of age when I lived in the UK .
Call me pompous if you like please don’t title it with
sorry as that is not true !
All the best to you 🙂
I honestly don’t think the comment was aimed at you Shumbah. Any post like this causes people to think it was aimed at them personally but usually it’s just a complaint about posts in general.
Your comments never come across as pompous and it’s clear you are seeking to help others. It’s wonderful that you have been able to help people on this site. As my dad used to say ‘money is made round to go round’ and you clearly live by that.
Please keep posting and keep helping those struggling on here.
I feel your observation is unkind & unfair. everyone on here are suffering really badly of various sorts & their feelings about their rls are very raw & extremely upset
People reading your observation of everyone else may take offence at what youve put i feel & possibly feel you should be careful what you say
I feel that if you saw someone write that you were pompus you would be most offended- thats only my observation Obviously I.expect people to disagree with my comment but thats my humble point of view
Dear Alyson 66. I sincerely hope you are never in the position of extreme despair and hopelessness. You obviously have not been in this position or you would realise that this site is a wonderful, friendly and helpful place. So many of us have benefited from the advice of others. The advice is there. You do not need to follow it but if you are desperate you will be so glad to know you are not alone and many, many people share your distress and try to help, if only by supporting words.
Again I hope you never find yourself in this very black place with nowhere to turn. I wish you peace.
Alyson66, I’m sorry if you have felt some people have been rude or pompous, we’re all here with the same problem seeking some kind of advice or relief just hearing you’re not alone. I have been so grateful having found this site, I have gotten responses when I have asked for help, and I have used this site to instruct my wonderful doctor who took the time to instruct himself about RLS after I showed him how many people suffer from this horrible desease. Maybe there are times we might be more sensitive to advice and take it the wrong way, or maybe the person giving the advice was over excited giving advice and came out sounding pompous, but I am just grateful that all of you are here and never fail to offer a helping hand, even if it’s wrong. Let’s all be patient and grateful we can air out our thoughts, but I don’t think it’s necessary to mention names. If you feel a particular person wasn’t being nice or understanding, take it out privately with them, they might not even be aware of how they are sounding to others. I hope you find relief with this RLS, that’s what we’re all looking for. If I have been one of your pompous people, then let me offer an apology, it’s not my character but I might not have expressed myself correctly. Be well, I love this site and am grateful no one has ever been rude or pompous, just helpful.
Same here,I've learned so much from this site and to be honest have found it invaluable,it would seem a few people have taken my observation extremely personally, totally not my intention to upset anyone,it was purely an observation after reading a couple of post's...seems I've opened a can of worms....ooops x
I don’t think you opened a can of worms, more like some eyes. Sometimes people get over excited offering advice and may come out wrong the way they sound, lets not forget, we’re READING and not seeing expressions, and reading can be misinterpreted specially if punctuation is wrong. Poor Grammar is a great way to misinterpret what you read. Anyway, it’s all good here, I’ve had the fortune to interact with great people that have been more than willing to help, I read and then I decide what is best for me, like I always say, what’s good for the goose isn’t always good for the gander. For instance, many here swear by gabapentin, it didn’t work for me and made me gain an incredible amount of weight in one month, I wasn’t advised that Gabapentin makes you gain weight. This whole thing here is that we suffer from a desease that isn’t understood yet and we need to vent out. Keep venting, we’re all still here and will keep offering advice. 😆
Don’t get upset, not worth it. Be well, I’m the USA, woke up after four hours of sleep, luckily not from RLS. I just had foot surgery and I’m on opioids for the pain so I’ve been sleeping like crazy but I just woke up for no reason and now it seems I’m getting sleepy again. Going to give it a shot. Ive been lucky with my meds, been in the same dose for 9 years with no augmentation, but what I’m on doesn’t work for everyone, just a few here use the same. When someone asks for, help all I can do is tell them what I use and if that helps, it’s great that I could contribute. I use Tramadol, 50mg. tabs, one at 5:30pm ad another one at 11:00pm. The trick I found is that you have to medícate ahead of letting the RLS start, be ahead of the game, beat it. Once RLS starts it’s so hard to calm down even with the meds. I’ve found that you need to study yourself, be aware of your boddy needs as far as medication is concerned, and I’m glad I found how my system works. Good luck, I hope I can sleep again, luckily I’m bed ridden and can stay in bed all day, and I’m enjoying every minute. 😏 just call out when yuh feel you need help, I’m sure you will get many responses, if some don’t found nice, toss it out the window, enjoy the vibes that are helpful. Take care.
I have been on the site about 2 years. I have to say if an exchange of info is one-upping, I'm all for it. I learned so much on this site. I finally was able to stop Tramadol after about 8 years taking it (2 tablets a night)! All due to the wonderful know-it-alls on this site. Many thanks to you all!