Know it all's !!!

[Alyson66]

Rls is a very personalized condition,no two people suffer in the same way and what works for one might not work for another, nobody truly understands the cause of the condition but unfortunately several people seem to believe they are the world's authority on it, people come on here for support and advice not to castigated about there own personal experience or treatment because someone thinks they know better,we are all just trying to find a way through....good luck and keep on keeping on. X

[Hidden]

Couldnt agree with you more.

[nathanwilde]

Absolutely, well said!

We need to be able to share our experiences as we have experienced them. It's the best way for us to find a cure, if we got what each individual sufferer has learned about RLS for themselves and put it into one place, connected the dots, the triggers, the remedies I am sure we could find a solution for all!

Unfortunately I am quickly beginning to worry that many here may has a bias towards their particular treatment, and a fear of someone taking it away, but I hope I am wrong.

Wish you all the best with your battle!

[Hidden in reply to nathanwilde]

Yes you are wrong.!!

[nathanwilde in reply to Hidden]

I really do hope so, it's only going to hold us back otherwise

[Hidden in reply to nathanwilde]

Food for thought for me. I believe I tout info about good results I've had (maybe too much) but I want to be clear that I know my specific good results are not for all. One thing I try not to do is moan about less that good outcomes, Just because something didn't go well for me doesn'tmean it's not the answer for someone. Sometimes I get carried away by medical care that has worked for me; don't mean to. I do learn from others' experiences-good and bad- I hope at times people learn from me too. Thanks everyone for your info. irina1975

[Alyson66]

People have to be comfortable to speak for themselves, it's really not a good idea to speak for everyone else in an individual post as many on here seem to do...good luck Nathan on your own personal journey x

[nathanwilde in reply to Alyson66]

Thank you. We could all use a little luck

[jan_ET in reply to nathanwilde]

hi nathan i for one have been struck by the similarities not the differences and your selfless informative posts have given me hope for first time in many years i believe the answer to rls is by connecting the similarities dots and coming from a medical background am quickly putting together a clear picture please keep sharing as you are and thank you 😋 jan

[nathanwilde in reply to jan_ET]

Thanks Jan I hope you're dealing well with the RLS. It's a real struggle and one where you're unlikely to get much sympathy from those who haven't experienced it themselves. It feels like a lonely journey, but it's not. We're all fighting together

[jan_ET in reply to nathanwilde]

yes this forum has saved me and it makes me so angry and sad that so many of us are going through the same hell - my doc is really onboard with all this and is making me a case study with respect to the feritin iron so its going to be interesting to see the results in couple of weeks x thanks for all your help and information sharing- i so hope i can get my support group started here on Gold Coast - cant wait - take care - Jan

[Hidden in reply to jan_ET]

Hi Jan-me again. Magical thinking time. I wish there was a list of rls-interested docs who "get it" and also had rls . That way we could cut to the chase and skip the ones who are clueless about how rls affects quality of life. OK-just venting. It's almost 7 AM I'm tired . But I will go back to the real world now. Maybe a good idea is to have questionnaire for new docs to see where they stand regarding treatment pertaining to us and stop wasting out time and money re people who are not likely to help us. Maybe I just need some sleep. Take care irina1975

[involuntarydancer]

Now I’m really worried. I think that’s exactly what I do ...

The way I have seen it til now is that when I found this and another forum, I was totally ignorant and SO very grateful for the information and feedback I got, that I wanted to pass on what I saw as the good deed and inform others based on my hard won experiences.

I was also conscious that many, many of us have suffered unduly as a result of the ignorance of those who treated us and my thinking was that it was in everyone’s interest to get as much info out there as possible. In the process, it has I suppose led one somewhat to tow the Earley, Buchfuhrer, Allen etc party line.

I would say in my defense - and that of many others - that I see the words ‘we are all different’ typed so often (and type them myself) that I sometimes think we should shorten it to ‘waad’. So it is regularly mentioned and when not specifically stated, I think it is often inferred.

Insofar as this post is aimed at me I apologize if I have caused upset or seemed like I was trying to shut down debate. If I have done so, it was entirely inadvertent but I do acknowledge that it is easy to develop a herd mentality and make it difficult for individuals to flourish.

[Alyson66 in reply to involuntarydancer]

Hi, it's not aimed at any one perticular person or post,I just see all to often people posting a bit of hope they may have stumbled upon a possible solution or even just a slight improvement of their rls only to be shot down immediately by other members..we all are on a journey, some further on than others of exploring and researching our conditions and I think we all need to keep trying and ruling out different approaches,there is no right or wrong way.That being said I have learnt a great deal on this site and the insight and commitment that members like yourself bring is invaluable and helps a lot of people who without the information would still be stumbling around in the dark (lol,done that a few times). X

[Joolsg in reply to involuntarydancer]

I really do not think this post is aimed at you ID.

I have always found your posts extremely helpful and you go out of your way to help others on here with very detailed information.

I have to confess, I also thought the post was aimed at me, but I think we're being paranoid!

Like you, I always try to point out that we are all different and respond to different drugs and different treatments ( like iron/magnesium/diet).

[awwestwood in reply to Joolsg]

Joolsg - I totally agree with your comments about IV - I too have found her comments to be very helpful - she should not feel guilty!

[Hidden in reply to involuntarydancer]

Good idea. I like abbreviations and short cuts. Let's adopt 'waad' the less typing I have to do the better I like it. I think you all know by now typing is not one ofmy strong points!!! irina1975 (Burma)

[Graham3196 in reply to involuntarydancer]

I think you are a great one for trying to help everyone who comes into the forum

[nathanwilde in reply to involuntarydancer]

I can't speak for all, but as far as I am concerned I appreciate any information you're able to share and if I can learn form it I will!

I don't think you need to apologise for it!

Thank you and I wish you the very best with your battle.

[Hidden in reply to involuntarydancer]

Hi involuntarydancer. Personally I would rather have the information than not, however it's presented. The more info I get the better decisions I can make and the better I can talk (or argue as the case may be) with recalcitrant docs/healthcare givers. Then I have a chance of getting better care, Just my opinion but I think more doctors than not are not up to date on rls.Probably because it's not a hot financial topic so info isn't available. Pardon my cynicism but (at least in the US) if one or two expensive tests about diagnosing/treating rls were made available tomorrow everyone's learning curve would shoot right up!. I'm on a roll today. irina1975

[jan_ET in reply to involuntarydancer]

please dont stop sharing you may be saving someones life and sanity

[jan_ET in reply to involuntarydancer]

oh please dont think it was aimed at you - you helped me so much and please dont stop sharing - I dont believe in criticising anyone on this forum as we are all able to choose what we believe or not - the more information we can get the better to get to recovery - i personally am looking at the similarities not the differences so that i can join the dots and find a solution and I have loved your open minded sharing you have brought me out of a lonely darkness into hope God bless you 😍🙏

[martino]

Thanks! This is food for careful thought. If any person is getting particular help from their own treatment it is helpful if they share this. How it is expressed needs careful thought but it is better that they do share rather than being afraid of being a know-all. I guess we can all potentially gain that way.

[Hidden in reply to martino]

Ht Martino. We can all learn from everyone and for me I never know from where or who help will arrive. I remember once being in the hospital and was upset about something(Can't remember what now). And all the professional 'talking heads' were weighing in on what I should do. Then they left my room. After a while a tiny lady who barely spoke english came in to mop the floor, saw that I was upset and said just what I needed to hear. I don't think she even knew she was being helpful-just a few minutes of casual conversation while she cleaned my room. Out of the mouths of the 'unexpected...'. irina1975

[Hidden in reply to Hidden]

Well, its 7:30 AM and I'm readyto try and go back to sleep. Goodnight all! irina1975

[Alyson66 in reply to martino]

I think you've got mixed up a bit,that is what I'm trying to say, people should be allowed or at least given the opportunity to express new approaches or even old one's that may work for them without being told that they are wrong or don't know what they are talking about by other members,I will reiterated the information on here is invaluable but on occasion people are being suppressed by those who think they know better.waad.... lol x

[2everett in reply to Alyson66]

Hi Alyson66

Thanks for writing this. I stopped posting a while back for the same reasons you mentioned. It’s been playing my mind that I wanted to share my experiences and method of dealing with this but didn’t do it because very quickly a stream of posts would drown out my comments. It felt deliberate. Our ideas should be heard so that people can pick and choose from the wide variety of approaches of trying to live with this condition.

My approach for now, is dietary changes and supplements (I learnt about on this site) but who knows I may end up on some very unpleasant drugs in the future.The longer delay that the better.

When I read through some of the posts the other day I had noticed a change in the tone of the responses. I think that’s what gave me the courage to post.

Best wishes and thanks.

Everett2

[Hidden]

Thank you for mentioning this. One day surely if we all make observations and suggestions and folk listen there will surely be an answer.

I've seen in other medical conditions, the main one which stands out is stomach/duodenal ulcers, that it was someone who thought out of the box who solved it. The establishment thought he was crazy but he stood his ground and proved it by causing an ulcer in himself with his theory. He was/? still is an amazing Australian Dr called Barry Marshall.

Folk who truly care will hopefully get there with help. I believe the folk at the research places eg John Hopkins are trying their best - in fact I wonder if one of them or someone close to them has the condition!

I feel particularly keen too to alert folk to potential problems eg augmentation due to some treatments. `it feels like being a kill joy but the problems are so awful and were unexpected that it felt morally wrong not to warn others.

I hope that if we all keep explaining and observing and medical/research folk out there truly listen we'll get there ..... surely.

So please all keep posting. I suppose once someone finds a solution even to a minor degree you feel so passionate about it and relieved you can't resist shouting it from the rooftops.

But yes we must not rubbish what others come up with. Thats what was done to Barry Marshal and all ulcer sufferers should be eternally grateful to him. Most nowadays have no idea but the idea was completely preposterous at the time. I remember it all evolving during my medical career. It makes interesting reading

[Hidden in reply to Hidden]

I think more info is better than less. We can just leave what isn't helpful to us at the door.When I first started dealing with rls-2017- I didn't know very much about the disease or the meds-esp augmentation. My PCP gave me pramipexole. She said it might not continue to work but didn't mention anything about augmentation. Fate granted me a reprieve from having to possibly go through it. After a week I had a reaction to it,went to the ER and stopped taking it. Soon after I read about augmentation and crossed that med off my list. Maybe she didn't know about it. But she is sharp and well-read so I hope she wasn't just 'not bothering because she was busy that day'. And now I know a lot about this subject and I got all my info from this site. irina1975

[Bajatom]

We grow up and develop biases about our particular culture, the foods we eat, values we learn from parents and society, the way we dress, etc., etc. Not all of these benefit us or society so sometimes we overcome these childhood biases and move on to new ways of looking at things. As a young adult I had to examine all of these and change the foods I consumed for better health, the faith I had been taught, the "proper" way to communicate with my deaf daughter (sign language was forbidden by the educational establishment at the time), and my understanding of how life originated. All of this taught me I would develop other biases and needed to be aware of them so they did not prevent me from seeing the truth from another person's perspective. I appreciate the knowledge and sometimes enthusiasm contributors have on this forum for things they have learned work or don't work for themselves and most often for most people with RLS. I like it even when it might appear they have a bias about one treatment or another. I would hope so. Life should be exciting. But I find most if not all contributors are aware of their biases and often change their minds over time. I have my biases about what works for me but at age 81, turned it today in fact, I am open to being wrong and learning something new and useful from other people. Long live biases. May we all be aware of our own and drop them if they hurt ourselves or others.

[nathanwilde in reply to Bajatom]

Happy birthday!!!

Agree with everything you've said too - I'll do my best

Nathan.

[Hidden in reply to Bajatom]

This is my philosophy. As long as we are still here we are meant to continue to grow and change.At 73 I don'talways like change but after I grumble and b---h I eventually see things were supposed to turn out the way they did. I stilldon't always like it but I read somewhere "Everything is subject to change and everything is on schedule." I was on my way back to bed but saw more posts and wanted to read. irina1975

[Alyson66]

All I am saying is everyone should be allowed a voice and the respect of being heard.good luck all x

[Wilwell]

Thank you Alyson

Your summary is brief but addresses the basic concept of supportive websites

Such as this one!