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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Why??? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/7234-why.html)

Hi,
I will never understand for the life of me, why so many people are not into Research on this site. I realize their are just a few of us here.

So I have decided to delete alot of my posts. I personally have no problems with anyone here, but my heart is into learning about the walk I have been given. I realize RSD can just about do anything.

Maybe some of you could explain why research isn't important to you, to help me understand?

Sincerely Roz

hi roz

i am sorry you feel like you need to delete your posts.

no, not everyone is into research. some come here to find the answers. some don't know how to use computers or the internet as well as others to do the research. finding the answers on a site like neurotalk is invaluable to them.

everyone's education level is different too. we have educators and many professionals in the medical field here. people from all walks of life. you can learn something different from each.

research can also be looking for people or family members who have gone through or have the same illness. how they cope. what has worked for them. etc.

even finding a social outlet with people who understand.

i guess it depends on the type of research that you mean roz. hard medical data? imo many people have a hard time understanding it. it takes people who can do the research...find the answers and help explain them on sites like neurotalk.

Hi Roz,

OMG, don't delete, please! You and a few others are doing sterling work in retrieving lost info and posting brand-new stuff.

Right now, I'm quite unwell, but just wanted to add my voice of thanks.
For myself, time is the biggest issue, I work solidly (this isn't a choice) and have little time for researching. Also, unless a posted link explains to me what it is, I may not follow it - time constraints again, plus unless I know you (of course, I know YOU, so this doesn't apply to your posts) I won't click on just anything, could *be* anything!

Many of our members are in too much pain to stay long on the computer, sadly - important to remember that, and while we can mostly manage a quick few lines, it always takes time to find information. And, you know, some people like digging into things and are good at it, others are best at different ways of support...it takes all sorts, ya know....

Which is why you *are* appreciated. It's been quiet here last few days - Thanksgiving, busy weekend - but I know you are highly valued.

Ok, time for me to lie back down...return of vertigo, and I don't know whatall...
thanks again, Roz, just my $0.2 worth! ....xxx all the best.

Dear Roz,

I am sorry that you sound so frustrated. It seems that this is a topic that we revisit every so often....and that it never becomes resolved to everyone's liking. I don't think that it ever will, because there are so many different kinds of people that come here, looking for som many different kinds of things, and that use this site in so many different ways and for so many different kinds of things. If that made any sense at all to you.

I myself am glad that there are folks around here that do do the research. I do look at it, and read it...and take what I want or need, or can from it. I just usually don't comment. I am sure that I am not the only one that does that. Why don't I comment, might be your next question? There are lots of reasons for it: I might be processing the info that I have gleaned from the aritcles and websites posted; I might not agree with the topic or study; I might not like the source; I might like all of that, but need time to look up some of the more complicated medical jargon that I haven't heard before; or, honestly (? I am trying to be that here...please don't take any of this in any other way....Ok? I worry so much about folks reading things that I write in ways that they aren't intended) I just plain might not understand the thing at all. It might go zipping right off over the top of my head, parting my hair as it blows on past. Other times, someone might have said something that I myself felt or was going to say....thereby negating the need for any posting from me on the topic.

Those are my reasons for not posting on the research threads here.

But, like I said..you should never, ever assume that they aren't of interest to others here, that they aren't appreciated, and that they aren't read. Because they are...at least by me.

I find it very sad and upsetting that you have felt that it was a right and good thing for you to delete your a lot of your posts here. I see that the ones that you deleted were mainly the ones that had to do with research. That is very upsetting, because there are lurkers here that don't post at all for a number of reasons (such as the inability to type because of malfunctioning, clawed, painful, RSD hands) who might be visiting and lurking and reading this site JUST FOR those posts, those types of posts, that you deleted. How very sad....how very upsetting to them. To all of us...to have lost that information.

If you are asking "Why??" don't I (I can't speak for anyone else but myself in answering this...) do research myself...well....I did at one time. Before I came to OBT, and before I ever started posting, when I was a "True Lurker". I can get a little bit obsessed....and that is exactly what happened. The consequences of that, were that I spent HOURS and HOURS at the computer....suffered hugely from insomnia, yelled a lot at my kids (who were only little at the time, and were upset enough as it was) trying to keep them out of my hair, and fell into an awful, deep, long lasting, very scary and hard to get out of depression.

So, I started "Cheating", and letting other do research for me. Like I say, I read the research that is put up here, and always have. I have defended it's place here, just as I have defended the OT, and more light hearted, and other assorted Non-Research Threads too, because I believe that they ALL have their place. Everyone here has their own way to get by with this awful disease....and, as Curious said so well in her post, it all depends on what you want to call "research" because you can learn a lot just from reading the other posts, too.

But, like I had started saying, before I got off topic there a little...I started cheating, and letting others do the research for me. I read what is posted....and process that. I look up what I don't understand, and limit myself to that, for fear of becoming obsessed about it again. There have been a few times that I have "slipped" when a new treatment is posted, or a new idea...or whatever, that interests me. But..sure enough...I wind up falling into that same trap, and before I know it, I am up all night....going from site to site, comparing, and looking, searching..finding new and different theories, ideas, facts, treatments, etc. So...I stop. And, I read what is posted here. That is why I appreciate those threads so very much. And..I have said so in the past.

Anyway...I am really sorry that you are feeling frustrated. I know that this time of year is a hard time on all of us, what with the weather changing, the cold, and the stressors of the Holiday Season. And, the depression that can (and usually does...at least for me, if I am not very, very careful) walk hand and hand with it all. I hope that you don't choose to stay away...and that is not what you are meaning here in your post? I hope too, that you change you mind and put your posts back up, because that info there is very valuable to so many people. To valuable to be lost like that. That is such a loss.....it makes my heart hurt and break to think about it.

I really do appreciate you and everyone else that does the research and takes the time to share their findings. Just like I appreciate the folks that try to reach out helping hands to the people that are going through hard times and are at the end of their ropes and just need to talk. Talk about anything and everything. And, just like I appreciate the people that allow folks to blow off some steam, let their hair down, have a few laughs,,and try their best to have some fun during this hardest time of the year for so many of us to get through. We ALL have our place here....and any one of us, is missed when they aren't here, or when their words are missing. Just as you...and your words you just deleted...have their place and are already being missing by so many people. More than you probably know.

I really do hope that you reconsider. And, I hope that whatever it is that is making you feel badly and frustrating you eases up some. I care about you, and I want you to know that.

((hugs))
Jose

The last 3 that you deleated roz were right up my alley I just had not gotten to them yeat.. I am having cardiovascular issues so I am in the monitor past my shoulders tryin to get to research so fast.. and I am moving next week so I am juggling everything and just came back a few times this week.. I wish I coulda read those.. and somehow I think this is my fault, I had tonight pegged for catchup... my antid's must be mucked up cause I just wanna cry

I get alot out of your research!! This is what you bring to our table!! I am not a researcher! Sorry!! Not to say I don't use my computer for a tool, I do. But I just don't do it well. I am always getting off the beaten path onto something I don't need or what have you. Sheeesh. You are a very important balance to all of this. Than we have me - the moronic jokester, and and so forth. Each one brings to the "table" something unique. But I can absolutely guarantee speaking for at least two others besides myself that your hard work does not go unnoticed.

Unfortunately my huge cocktails of meds each day limit my abilities to focus strongly. Therefore I just exists now days. Who would ever believe I used to be the Director of a very large Human Resources Department for a very major airline with quite a few degrees under my belt including psycology (just a little). This RSD has reduced me to less than! :o And most days now I am lucky if I can even get out of bed. But for someone like you who can spend hours reading and researching I commend you!! :) I only wish I still had my thinking cap!

With that note I hope and wish you continue to do what you do!!! :)

Love Mark :)

I am definatley into research- I have written letters to Oprah, Dr Phil and Montel trying to get our disease known so we can raise money for research- I researched ketkamine for 2 years before I (unsuccessfully) tried. I went thru the HBO2 tx without success) I am constantly looking for stem cell information to no avail!
I considered joining the thelidimide study but decided against it as per my PMs advice. I am stuck and dont know what else I can do? Please let me know- I want out of this RSD as all of us do- just seems to be a dead end...Money for research should be a goal I think...Please dont stop giving us your information!

DebbieHub

Roz,
please don't delete your info and posts.

I think many are still hoping that BT data will be restored soon too.
So much info was searched for and posted there once- why should we have to do it all over again..unless really necessary.
But time will tell if it will ever be reposted.
But I think Mike Weins {zombieslayer} is trying to get it back.

Not to mention time constraints, discomfort/usage limits and plain old research burn out.

If you make some sort of a topic list for me to work from I can try and locate more info.

I'll make sure to add any RSD links to the stickys here too - from the list on the TOS forum.

Hi Roz

Thanks for doing the research - you are more organised than most of us... I try and read them - and when I have time I go through the archives and look for a specific paper I have seen reference too. It's just a question of time and or energy. Also... alot of the research is so dodgy it just confuses me. But please don't stop posting it!
Love
Rosie xxx

Dear Mark,
I am saying dear because you remind me of my oldest son. Who calls me several times a week. The both of you have a huge heart of gold.

I am 100% sure you are mentally gifted, like him. Like you, he is also one of the funniest bloats I have ever met. I had him when I was 19 so I somewhat grew up with him.

He would come home from school telling me he was suspended, and 5 min. later he would hand me an award of achievement he had recieved. You are as sharp as they come. Hugs, Roz