Why Their is a Huge Problem
 

Hi Everyone,

Artist and some others as well do alot of research. Let me tell you don't just come across studing this stuff in 5 minutes. I for one have studied as well, with very little appreciation.

She is very knowledgeable in the medical field in general, with the common sense to go with it.

People have been in very rough shape here and she bent over backwards for them, which I have seened over and over again. She is a huge asset here.

One thing I really appreciate is when someone doesn't agree with me, then I can give it more thought and be very thankfull for their tips and suggestions.

Does it really help me if someone says they are sorry about my rough day?
Much Love, Roz

I know what you mean, Roz. Some of us here (me included) do a lot of reading and research and it definitely isn't learned in 5 minutes... it's hours upon hours!

I appreciate your reading and research as well... you have found so many great pieces that I hadn't found yet. Thanks! :hug:

Sending you pain free hugs! :hug:


P.S. and many thanks to my dear Artist!

we sure do appreciate artist, Roz and all of you here very very much!

The essence of this forum is always the deep and genuine support, as well as the wealth of info and knowledge and experience that so many of you have

I know many of you been together as a support group for a long time and you have sure built an amazing foundation for others to be able to also grow on

so

onward and forward eh!
Cheri :)

Hey Roz,

I always think and am thankful of the RSD reserach bunnies - Molly, you, Micheal, Artist, Vicc to name but a few of you! I know that everyone in this forum would bend backwards to help jump through the hoops to help people get a better quality of life.

However, some days I need a virtual hug, or the chance to just scream about this - I know it doesn't cure me, but it gives me the chance to vent, pull myself together again psychologically and keep plugging along with it. However, long term the research is so important, to suggest a new way of understanding RSD and hopefully of understanding and creating new treatments...

I know that the research bunnies do feel unloved sometimes - because I guess, we are so used to having awesome people who are motivated to understanding the nervous system, to understand blood flow, neurology, immunology and every other ...ology until an understanding of RSD arrives, that we get lazy and stop saying thankyou and take them for granted.

So.... to all the wonderful research bunnies

I Love you all so much and you are doing a brilliant thing - and every piece you find increases your, and our, understanding of RSD.

and... a vote of thanks to all of you bunnies!!

Love you tons

Frogga xxxxxxxxxxxxxx

PS - hope this makes sense!

I certainly appreciate your research
 

Just wanted Roz and Artist and others to know that I truly appreciate their research. I really look forward to that part of the forum as I want to learn as much as I can. Unfortunately, I am not very computer literate with research on the internet or have the knowledge to provide links, etc. I am clueless and really should learn as I know I am capable. It is just a matter of finding a friend or someone to instruct me.
Sorry I just ask questions or give support but I really would love to join in the research part as well. That was part of my previous job - before computers and the incredible capability of the internet.
On another support group site someone posted infor on the recent approval of lyrica. They detailed the study itself which was quite fascinating in the # of drop outs, and the # of peoople actually helped, etc. However, on that site you could not post links or do PM's. Thus I don't know how to get to the study. Someone tried to help out on the FM board but that was just basic info on the approval itself.
I am so happy for this forum and neurotalk where you can do links , PM and have the wonderful people such as yourselves to help us with the research. I do appreciate it.
Sydney

:hug: hugs for you roz

i am not a big one on using the thank you button. shame on me i guess. i try to make a little post to do the thanks. life has thrown me some curve balls lately and i haven't been able to do those posts.

but....try and look at the number of views your posts are getting. so many people who are not registered members are recieving valuable information all on one forum...because of all the research you and the other do here. same for the members here.

i LOVE to check out the links that are posted.

the support threads are just as valuable. it shows how compassionate the members are. it lets others know they are not alone.

i am so thankful that you and others can grasp the full scope of what rsd is. your explanations and the links have been so helpful to me. for those who are new to rsd..or don't have rsd....i';m not sure if even saying thank you is enough.

but thank you. :hug:

I also would like to thank you for all the research that you have done and posted for me. Until a few months ago, I didn't know much about RSD. When my 1st doc mentioned that he thought I had it, I thought he was implying that the pain was in my head and not real. after joining the board, I found out what he was saying and it made me feel better about myself. I just misunderstood what he was saying. Everyone here has helped me with the understanding of this problem, and allowed me to vent, worry, console, and talk to others.
Mary

Hey, thanks all of u :hug:

Thanx to *everyone* who contributes to the researching, and to *everybody*for making this a truly unique forum.

Can't use my hands much at the moment, jarring triggers the RA/Sjogren's thing which is in severe flare right now. Sorry all, and thanks mods.

Good to see some book/research posts back on,
:hug: :hug: (special big one for Roz..) xxx

Hello everyone. If I haven't said it before here is a big THANK - YOU to everyone here.... to those who spend hours sharing their reseach as well as those who offer emotional support there are no words to express my gratitude. My doctors have told me NOTHING about RSD. All they have told me is that I have it. Everything I have learned about this condition has come from the RSD sites and from talking to all you kind folks. This forum has been a godsend to me. There is not one person here that I don't value and appreciate.So, Please keep posting. I still have so much to learn. Jeannie

If it weren't for ALL (and I do mean ALL) of the research and articles that everyone has posted here.... I probably wouldn't be here... I would have given up a long time ago.


You see... I take every bit of research and every article posted to my doctor... he sorts it out as to my case and has been able to give me the best treatment that he can. Every medicine I am on has came from someone's posting.

:hug: to all!!!!
THANK YOU FOR ALL YOU DO and FOR ALL YOU'VE GIVEN ME!!!

:grouphug: :grouphug:
Abbie

Hi all,
 

I do appreciate the research and all that is done for me but I don't agree with limiting questions asked. I think what is being said here is just wrong.

We have newbies coming on here that are not able to sat and research things even in this forum.

I have never seen a thread like this before and it sickens me that people climb on board of an issue that was started on a thread that was closed instead of letting sleeping dogs lie.

There are a lot of people that have been on here forever and I can't name them all but they are always pulling up research for others such as Vicc, DiMarie and so many more and I have never seen them say that they didn't want to help someone new that needs help.

This forum to me has always been a great place for new people to come and learn and old ones to help them learn and also the older ones still need help themselves.

I have seen many of the older ones pop on here every once in awhile for in deperation of support and help even if it's a subject that has been on here 100 times before.

People shouldn't pick and choose who they want to help and who they don't want to help on here. As I said before the new ones need help when they come on here and it should be given. Until they get their diagnoses and the help they need from Drs. to get diagnoses and to get the help they need from Drs. to calm down the pain they are in then they need help here to get them through the roughest time.

I'm sure this will make many mad and that's ok. I feel this thread is just a runoff from the one started on Unrouley1 that was given a hard time because she needs answers and needs help.

If people don't want to do the research to help someone then don't do it but don't make rules for others to follow on here. The older ones that have been on here as I said a long time have went out of there way in all of these years I have been on here to jump on board and help everyone. Why should that change now?

Ada

boy oh boy! i had no idea what this thread was about when it first came out and i am still in the dark about it's origin and i am glad of it!
i do not think there is a problem here.
i love the 'informers', my first post here was on how i was thrilled with the knowledge that was shared here but i also do my own research for my own specific problems.
i love those new people who ask questions and are willing to come out and ask a question in the midst of their pain and sadness and if i have an answer, i share it and if i don't i go back and read how others answer.
i love those who vent and feel free to do so and i vent myself at times.
let's all just be thankful and blessed to have the opportunity to know others with rsd, and let's all have empathy, for where each of us are, in our rsd.
joan

I am hoping that all here can move forward now and continue on with doing just what this forum is so good at........sharing all that great research and experience and supporting ALL members

Perhaps this thread has run it's course now and we can let all this rest, acknowledging the incredibly valuable research posted here by so many, while also being so thankful for those that give to the group by offering such caring support for other members.

thanks
Cheri

hey Ada,

No one has ever been refused help on this forum, nor will they be.

I claim the right of redress on just one point, since you are referring to my post - a problem about the editing process is that it makes it easy to misinterpret what remains of the post and to misremember the original. What I said was "I don't want to encourage you further in a cycle or pattern that seems to me to be potentially harmful and getting you nowhere."

Rather a different thing.

IHH, your point about using the "search" button more is excellent advice.

Joan, I thoroughly agree with you; Chemar, yes let's get back to doing what we do best...helping people, with whatever tools we have at our disposal.

all the best :)

Livin in the fog
 

All the research here has helped me deal with this monster from the very first time I laid eyes on it. I didnt even realize there was sooo much information out there. It also peaked my interest and got me to researching on my own. So much so that nearly everyday my eyes are blurry, and it is like walking in the fog :D

I think what makes it so interesting is that there are so many different angles to this, and as many opinions, it just begs for indepth research. I would probably share more things that I find, but dont see myself as any kind of expert. Wouldnt want to confuse everyone when im also kinda fuzzy on the details sometimes. I have increased my vocabulary though :p

It seems to me there are some that just have a thirst for more understanding of what they personally are dealing with, and at the same time share what they find with all the others. I am very thankful I found everyone here, and consider some on here as my very best friends in the world. I would try to name them but I know that they know who im talking about :winky:

I have never received as much support, love, or caring anywhere, not even at home. :grouphug:

What a very encouraging post, Allen. Thank you.

I think perhaps this thread has run its course tho

Unfortunately, when new threads are started to continue on from where a thread was locked, we inevitably start moving into turbulent water again.

The written word can sometimes be so misunderstood and people's motives can therefore be wrongly attributed. I know that the members of this forum have shown over and over what a very caring group you are...ALL of you :)

unrouley, I do hope you will return to posting and that you will continue to receive all the support and shared experience and knowledge of this group....

and

to all of the rest of the members here, I want to personally thank you for what you do here.

to those who give so much of their time to do and post their research and experience for the benefit of others...thank you!
and
to those who focus their attention on welcoming new members and offering support to all here so kindly....thank you!

I hope all can move on from here and pull together for the benefit of all.
thanks
Cheri