What’s going on ?!!!!!!!!: I’ve just... - Restless Legs Syn...

Restless Legs Syndrome

14,794 members9,410 posts

What’s going on ?!!!!!!!!

Esme2007
Esme2007

I’ve just been reading the posts about someone being a ‘know it all’ oh my goodness............. I came on this forum a few months ago and it has helped me so so much . Much more than my GP ever has . I am so grateful for any information that I can digest and see if it applies to myself as an individual. Not all the information and advice given will apply to all . Manerva - and some others have really helped me over the last few months . I value their opinion and information so much . I have had some excellent advise and know that they are really trying to help others with this awful condition.

It made me really upset this morning to read these comments . Why take the time to write them ? If something doesn’t apply to yourself then skip through it and move on . Comments like this could cause real upset and prevent further posts which could help other people . I’m sure the individuals they are aimed at are strong enough to ignore what’s been said . I just want to say thank you to Manerva and others who have taken their own time to research and try and help others . Yes - we can all google - but it’s just not the same as reading a person’s opinion on things are experiencing RLS themselves . I’m sure google hasn’t got RLS !!!!!

If you don’t like what you are reading then just ignore or leave the forum . I know that anyone on here experiencing RLS - this cruel , awful syndrome are here to gain information and help . Please don’t stop posting your help , information, and general comments. I value you so much and I’m sure many many others do .

Thank you to you all xx

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49 Replies
oldestnewest

👏👏

Doh! I missed it too, sounds fascinating!!

Esme 2007 How beautifully written and expressed. Thank you. Totally agree. Xxx

Kaarina
KaarinaAdministrator

Thank you, Esme. It is good to hear that as a newcomer here, you have been helped greatly by others giving their time to offer help and advice It is postings like yours that remind us what a great community we have here. :)

I would be in a far worse place than I am now, without the pertinent advice and support from the knowledble researchers on this forum. An absolutely huge thank you and a virtuall bouquet of flowers to all that have answered my queries and helped me in my understanding of RL.

Thank you 😊😊😊😘😘😊

Kaarina
KaarinaAdministrator in reply to smilingjane

Thank you smilingjane. Those that give good advice and support to others, are very much appreciated by most in our community.

smilingjane
smilingjane in reply to Kaarina

I would be all the more ignorant and lost without.. .

😊

Well said, and I wholeheartedly agree with all the above while adding my own huge gratitude to all the wonderful contributors on this site. Great respect.

Kaarina
KaarinaAdministrator in reply to oldfidgetlegs

Thank you. :)

This site has been a life saver for me. Well said Esme2007. I’m so grateful that someone takes the time and trouble to offer help & support to me.

Kaarina
KaarinaAdministrator in reply to Noddedoffagain

Thank you. :)

Spot on Esme2007 !

I have received so much advice for which I am so grateful.

Kaarina
KaarinaAdministrator in reply to 21years

Thank you. :)

I have had so much help from this forum, long may it continue. Thank you to those who took the time to reply to my questions, you are appreciated. It is such a shame when someone makes negative comments when it is obvious they know nothing about RLS.

Kaarina
KaarinaAdministrator in reply to H12X

Thank you. :)

Myself included,I turn to this forum on a daily basis for comfort and solace and excellent advice and I no I'm not alone with this dreaded affliction. I champion all of you. Have the best day you can🙏❤

Kaarina
KaarinaAdministrator in reply to Inallfairness

Thank you. :)

I totally agree with you. We are all sufferers of this awful disease. Its probably lack of sleep that makes these people grumpy. No excuse, we are all on this forum to help each other, offer tips on how to get relief, if any. What helps one sufferer dosent always necessarily help another but its good to try and know that there is possibly something out there that could help. This is a great forum. Let's don't spoil it.

Kaarina
KaarinaAdministrator in reply to SMPR

Thank you. :)

If I hadn’t had Shumbah giving me so much of her time helping me out after 40 years of RLS I don’t know what I would have done. I am now free of RLS for the past 6 months on Norspan Patch. This forum has been for me a life saver. Thank you

Kaarina
KaarinaAdministrator in reply to Shir_11

Thank you for sharing. :)

Hear hear without these individuals knowledge and generosity with their time in posting replies where would we be. Always found help and support on this forum

Thank you

Kaarina
KaarinaAdministrator in reply to Operabab

Thank you for sharing. All these kind words are a boost to those that continue daily to help and support others in our community. :)

I honestly believe this site has saved lives. Suicide comes to the mind of many of us who suffer from this awful affliction, and knowing there are others here who are willing to spend so much time writing to help others is heart warming. There are people on here who are the first to jump in to help anyone asking, drafting carefully thought out detailed responses which takes time and thought. I thank them all, they have brought people back from the brink. Where would I be without them.......

Elisse2
Elisse2 in reply to Gmc54

You are right.! We had a member a while back , he was in a real mess, augmenting, he was on the brink, he had enough, some of us managed to get him to go to his doctors, it was his turning point, Look up Nick the Turk for his journey i am sure he wont mind me mentioning his screen name for you to look. He does appear on here sometimes to help other members who are going through augmentation.

Kaarina
KaarinaAdministrator in reply to Elisse2

Yes, Nick does pop in every now and again. He is forever grateful to those that helped, sympathised and really looked after him on his journey back to normality.

Kaarina
KaarinaAdministrator in reply to Gmc54

Thank you. What you say is true.

Micafe
Micafe in reply to Gmc54

<<Suicide comes to the mind of many of us who suffer from this awful affliction>> You're sooo right. :-(

Well said. I am glad you are getting what you need there.

Extremely well said Esme. We are all suffering with this hideous disease that most doctors know very little about. The so called "Know It Alls" on this forum have provided me with so much valuable information that I have been able to communicate to my doctor which has helped him to help me.

There always seems to be someone in every group who just wants to find something negative to say. These people will never learn anything because they are not willing to admit that someone else knows more than they do.

To all of you "Know It Alls", please don't let this negative person dissuade from continuing to perform such a valuable public service of providing others with such valuable information. It give us hope.

Thank you all very much.

This RLS journey brought me here. I, too, have been helped. Maybe this person was on the edge due to their own symptoms and it came out in this way. Wish him/her well, hope they find the support they need and hope will find helpful information and medication. As for me, I'll stay here because I've found help here. Appreciate you all.

No one has mentioned "Manerva" (the elephant in the room) who had -- before the stupid post about know-it-alls -- taken considerable time to share extensive knowledge on this subject. I have more than once looked for what "Manerva" had to say to get a complete and sensible summary (sometimes lengthy) on the question raised. Yes, I wondered about the time these took, but they were a wonderful resource for everyone. We all benefited so much from those posts. What is the problem of someone who knows a whole lot generously sharing that information!?!?!? Thank you sooo much Manerva. Come back.

Kaarina
KaarinaAdministrator in reply to wantokporo

Manerva has not gone anywhere. Manerva is replying to threads, wantokporo. :) I read some replies, an hour or so ago. :)

Esme 2007 You expressed exactly how I feel. Thank you. Totally agree. Xxx

Hear, hear well said, I couldn’t agree with you more. When we ask for advice we are reaching out to people to help us. How awful if those people who so generously give their time and go out of their way to help now feel they can’t do that!

We are all suffering so much in our own way and any support from fellow sufferers means so much.

Thank you Esme for expressing it so eloquently.

Kaarina
KaarinaAdministrator in reply to Scattypatty

Well said. I am sure that those who generously give their time to help and support others in our community will continue to do so. They are very caring which has been proved time and time again.

What happened? I haven't seen anything criticizing Manerva or any of the other people here that have helped so much. I am extremely grateful for the help he has given me.

Kaarina
KaarinaAdministrator in reply to Micafe

Thank you, Micafe. Manerva is very caring, as are many others in our community who willingly give their time to help and support others. :)

Micafe
Micafe in reply to Kaarina

I just read the post. What a rude and ungrateful person. Nobody is going to miss her.

Kaarina
KaarinaAdministrator in reply to Micafe

Bellamaid went of her own accord.

Hidden
Hidden

Hello. Since I have been given the privilege to again respond, I am going to ATTEMPT to explain what has been going on as it relates to “ Know it all”. Let me say at the outset, I am not here to cause trouble for myself or anyone else. Secondly, I would like to identify myself as an RLS sufferer as well as a Registered Nurse with 45 years experience in all areas of nursing.

I have been a member of this group for some time but have not participated for awhile. When I did, two days ago I noticed a comment from someone ( the name I do not recall ) who was very upset and made the choice to leave the group. The reason given was that no one person has all the answers re RLS but there seemed to be a

“ Know it all” in the group. By the time I responded to their statement, it was no longer visible leaving only MY response. THAT response apparently started this

“ firestorm” of controversy and in many cases were directed at me!

My response agreed in part to the one who had left the group as I too had noticed the very same thing. Since there was nothing for the group to refer back to, my comments were both challenged and taken out of context. Apparently, my comments were reported since I was advised by email that I could no longer comment as I had been block by automation. However, I continued getting emails showing many more responses to my comments. I was not able to respond to any of these! I felt that was extremely unfair and very frustrating.

Therefore, I contacted the administrator of this group in an effort to explain this unfortunate situation. Today I received a response from Kaarina. I am now allowed to be able to speak again and I appreciate that. I hope this clears up the confusion and controversy which came out of this.

I will now weigh my own options re staying in this group. I am dealing with these physical issues and many other difficulties in my life. If I cannot make a statement, give an opposing opinion, offer personal experiences and give educated medical responses without what I have experienced these last two days, my staying may not be in my best interest.

My apologies to any and all if I have offended or contributed adversely to your physical or emotional well being.

Elisse2
Elisse2 in reply to Hidden

If ONE person was answering all the posts did it matter.? It didnt make them a "know it all" as the person has been corrected several times on things not quiet right, and has been gracious enough to accept they were wrong. It made them someone who cared enough to answer the post and has helped many people on the forum, as has many other members . I dont know why it seemed to be a problem for the member who has now left or you. None of the other members on here seem to be bothered, just happy to get a reply to their suffering from their RLS. from some one who has enough knowledge to advise them on what to do. I think we need to move on from this now, and do what we all do on here, give our advice and support to those who need it.

Hidden
Hidden in reply to Elisse2

“ Know it all” is in quotes because that is the phrase that was used by the person who left. They were not my words; just used them in the title. Obviously something bothered the one who has left. I agreed with that person in part but apparently I should not have done that because you are now accusing ME of being “ troubled” by it!

I just offered an explanation and an apology. That’s all I can do.

Elisse2
Elisse2 in reply to Hidden

Because you agreed with them in part. that to me pointed to it bothered you too, as it seems to other members aswell. Maybe you could have explained it better on what you meant as .. agreed in part. I dont have any more to say on this, its done its over.

Kaarina
KaarinaAdministrator in reply to Hidden

Hi RN4ever,

It is all a mystery to me because I never restricted you (or blocked you, as you call it). You have always be able to respond and post since you became a member two or so years ago.

No one reported you to me.

After some time passed, (a day I believe) I decided it was best to draw a line under the thread you mention and get the forum back to helping and supporting each other.

At no time were you restricted by me.

Hidden
Hidden in reply to Kaarina

As I explained in my messages to you, the automated system blocked me, kept me from replying or whatever word / phrase you choose to use. How can that happen unless a report is sent? I never said YOU blocked me.

I have re explained to you, responded to Elisse to re explain, offered my apologies to all and I am still being challenged!

I am going to make this very easy for you and your group. I wish you well, but this is mind blowing to me! I don’t need this in MY life! It is time for me to leave as well.

kleelibby
kleelibby in reply to Hidden

Sorry to see you leave (:

Thank you so much for your post. I feel exactly the same way. I hope everything sees your post ❤️

Kaarina
KaarinaAdministrator

Thankyou, Esme for starting this thread.

It is now time to move on, welcome new members and give out advice, help and support to those requesting it.

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

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