Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Ginny, What is wrong with your eyes? I'm like way behind in emails......haven't been online in like 2 weeks now, only been answering private emails when I have been near my computer..... I just went today and got my eyes checked. I DID have since I was 10 one eye near-sighted and one eye far-sighted.....but only bad enough that I only needed my glasses for reading and the like all of these years. I never had to wear them all the time. Well.....I found out that everything changed thanks to the Fibromyalgia. In 1 year, the Fibromyalgia has switched my eyesight from that to both eyes being really far-sighted. He told me that I would have to wear my new glasses all the time instead of only when I read......and, that he was going to "really push my eyes" and for the first 4-5 days, walking was going to be weird and different, because of the glasses would make everything closer. Gee.....I already have problems walking.....like I needed another excuse to fall down! But, I just was wondering if your Eye problems was caused by the Fibromyalgia or what exactly...... it really shocked me though when the Eye Doctor told me straight out that it was the Fibromyalgia that caused mine..... Tonia ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 TONIA- YOUR EYE STORY REMINDED ME OF WHEN I FIRST GOT GLASSES. I WAS IN THE FOURTH GRADE AND I HAD TO GO DOWNTOWN TO THE EYE DOC; HE GAVE E THESE CAT-EYE RIMS THAT WERE HIDEOUS!! ANYWAY, WHEN I LEAVE HIS SHOP AND GO TO THE CORNER TO CROSS THE STREET, I FALL STRAIGHT DOWN AND HIT THE PAVEMENT!! THERE I AM SPRAWLED OUT IN THE MIDDLE OF THE STREET IN THE MIDDLE OF DOWNTOWN. AND WITH IT BEING A SMALL TOWN YOU KNOW EVERYBODY IN TOWN FOUND OUT ABOUT IT!! I WAS SUCH A CLUTZ!!...TANYA...LOL Tonia wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 TONIA- YOUR EYE STORY REMINDED ME OF WHEN I FIRST GOT GLASSES. I WAS IN THE FOURTH GRADE AND I HAD TO GO DOWNTOWN TO THE EYE DOC; HE GAVE E THESE CAT-EYE RIMS THAT WERE HIDEOUS!! ANYWAY, WHEN I LEAVE HIS SHOP AND GO TO THE CORNER TO CROSS THE STREET, I FALL STRAIGHT DOWN AND HIT THE PAVEMENT!! THERE I AM SPRAWLED OUT IN THE MIDDLE OF THE STREET IN THE MIDDLE OF DOWNTOWN. AND WITH IT BEING A SMALL TOWN YOU KNOW EVERYBODY IN TOWN FOUND OUT ABOUT IT!! I WAS SUCH A CLUTZ!!...TANYA...LOL Tonia wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Yes, let's explore this. I'll be thinking of questions that have been floating around in my head. Hope your visit with everyone is wonderful. I think you are there right this minute! Lyn Ginny Barrientos <hisloss123@y...> wrote: > Lyn, > > I am ready to find out all the answers to these > questions..Maybe we should come up with a list of > questions for all to answer in the group and compile > the information we get and see how many people here > have the same disorders other then RSD and how long > they have been dx with everything including RSD and at > what age they were dx with what they have been dealing > with all of this. It will be interesting to see what > everyone answers...I don't know how we can do a study > annomously...so if people didn't want to participate > they wouldn't have to. Let me know what you think and > we can come up with a list of questions that we would > like answered. Hoping you a wonderful snowless > day...Hugs..Ginny > --- lynlorraine <lynlorraine@y...> wrote: > > > > > Ginny, > > > > I wonder about all this too. I think that I should > > be a doctor > > because I really want to figure this out. I have so > > many questions, > > so many observations that I feel like a detective. > > Why do we get it > > and others don't? What body makeup do we have that > > promotes this > > bizarre reaction to injury. What is the mechanism > > and how does it > > relate to other health issues and yes I want to do > > the study > > myself.........so I guess you've got a partner > > whenever you are > > ready to jump in! LOL Lyn > > > > Ginny Barrientos <hisloss123@y...> wrote: > > The more we all talk about other syndromes and > > diseases it seems > > the more we all have in common...wondering if there > > is a correlation > > to why we all got RSD. Wish a dr would study why > > some people get > > RSD and why others don't and if there is a > > predisposition and that's > > why. I guess I should have been a dr...Maybe then I > > coud do the > > study myself...lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Yes, let's explore this. I'll be thinking of questions that have been floating around in my head. Hope your visit with everyone is wonderful. I think you are there right this minute! Lyn Ginny Barrientos <hisloss123@y...> wrote: > Lyn, > > I am ready to find out all the answers to these > questions..Maybe we should come up with a list of > questions for all to answer in the group and compile > the information we get and see how many people here > have the same disorders other then RSD and how long > they have been dx with everything including RSD and at > what age they were dx with what they have been dealing > with all of this. It will be interesting to see what > everyone answers...I don't know how we can do a study > annomously...so if people didn't want to participate > they wouldn't have to. Let me know what you think and > we can come up with a list of questions that we would > like answered. Hoping you a wonderful snowless > day...Hugs..Ginny > --- lynlorraine <lynlorraine@y...> wrote: > > > > > Ginny, > > > > I wonder about all this too. I think that I should > > be a doctor > > because I really want to figure this out. I have so > > many questions, > > so many observations that I feel like a detective. > > Why do we get it > > and others don't? What body makeup do we have that > > promotes this > > bizarre reaction to injury. What is the mechanism > > and how does it > > relate to other health issues and yes I want to do > > the study > > myself.........so I guess you've got a partner > > whenever you are > > ready to jump in! LOL Lyn > > > > Ginny Barrientos <hisloss123@y...> wrote: > > The more we all talk about other syndromes and > > diseases it seems > > the more we all have in common...wondering if there > > is a correlation > > to why we all got RSD. Wish a dr would study why > > some people get > > RSD and why others don't and if there is a > > predisposition and that's > > why. I guess I should have been a dr...Maybe then I > > coud do the > > study myself...lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 HI LYN I HOPE THAT YOUR DOING GOOD I WOULD LOVE TO HELP WITH THIS THEN MAYBE I COULD FIND A DOCTOR.... WELL LET ME KNOW AND WE CAN START PUTTING A LIST TOGETHER..OK.....TODAY HAD BETTER BE A BETTER DAY YESTERDAY I HAD PAIN SOOOO BAD THAT I COULD HAVE SCREAMED..... MY LEGS WOULD NOT WORK THAT SCARD ME BUT THEY ARE DOING BETTER NOW ...HOPEFULLY I CAN GET TO MY COUNSELING APPOINTMENT AND TO THE STORE..... FROM ONE DAY TOO THE NEXT YOU DO NOT KNOW..... LET ME KNOW IF YOU FIND THE ARTICLE AND STUFF I WILL START SOME RESEARCH FROM MY END ALSO SOFT HUGS TO YOU PAMTricia Skiba wrote: Lyn and Pam - I believe I recall reading at one point that Dr. Schwartzman in Philadelphia who is an "RSD specialist" as has great word of mouth as to his bedside manner and treatment of his patients, was diagnosed with RSD himself at one point. Of course, I'm losing my mind or am perhaps retrieving faulty memories, so you may wanna check that out Tricialynlorraine wrote: Hi Pam, Maybe we can make a difference! Does anyone know of a Doctor who has RSD??? This has been on my mind for the last week. With the reality of the numbers of people who are now being diagnosed we've got to have doctors experiencing this with us. He/she would have the personal upfront knowledge of what is happening in the body together with the medical knowledge of the systems at work. Any suggestions???I have started a sheet of paper hanging my my computer to collect my questions as they float through my mind. I tried to sit down and write a list and my mind went blank so I am approaching it from a different angle. Seems I've thought about this so much that I've created a closed loop and know I must break it. If you have any questions shoot them this way on the board or personal mail. I'll start a collection that we can then refine. Remember no question is "dumb". We are going on a fishing expedition! Love to you and hope you are having one of the better pain days, LynPamela Fredette <patches13033@y...> wrote:> HI LYN COUNT ME IN TOO I HAVE ALL THESE QUESTIONS ALSO SURE WOULD LIKE TO KNOW SO FIRE AWAY...MAYBE WE COULD TEACH THE DOCTORS A THING OR TWO....SOFT HUGS PAM> > lynlorraine <lynlorraine@y...> wrote:> Yes, let's explore this. I'll be thinking of questions that have > been floating around in my head. Hope your visit with everyone is > wonderful. I think you are there right this minute!> Lyn> > Ginny Barrientos <hisloss123@y...> wrote:> > Lyn,> > > > I am ready to find out all the answers to these> > questions..Maybe we should come up with a list of> > questions for all to answer in the group and compile> > the information we get and see how many people here> > have the same disorders other then RSD and how long> > they have been dx with everything including RSD and at> > what age they were dx with what they have been dealing> > with all of this. It will be interesting to see what> > everyone answers...I don't know how we can do a study> > annomously...so if people didn't want to participate> > they wouldn't have to. Let me know what you think and> > we can come up with a list of questions that we would> > like answered. Hoping you a wonderful snowless> > day...Hugs..Ginny> > --- lynlorraine <lynlorraine@y...> wrote:> > > > > > > > Ginny,> > > > > > I wonder about all this too. I think that I should> > > be a doctor > > > because I really want to figure this out. I have so> > > many questions, > > > so many observations that I feel like a detective.> > > Why do we get it > > > and others don't? What body makeup do we have that> > > promotes this > > > bizarre reaction to injury. What is the mechanism> > > and how does it > > > relate to other health issues and yes I want to do> > > the study > > > myself.........so I guess you've got a partner> > > whenever you are > > > ready to jump in! LOL Lyn> > > > > > Ginny Barrientos <hisloss123@y...> wrote:> > > The more we all talk about other syndromes and> > > diseases it seems > > > the more we all have in common...wondering if there> > > is a correlation > > > to why we all got RSD. Wish a dr would study why> > > some people get > > > RSD and why others don't and if there is a> > > predisposition and that's > > > why. I guess I should have been a dr...Maybe then I> > > coud do the > > > study myself...lol. > > > > > > >yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 HI LYN I HOPE THAT YOUR DOING GOOD I WOULD LOVE TO HELP WITH THIS THEN MAYBE I COULD FIND A DOCTOR.... WELL LET ME KNOW AND WE CAN START PUTTING A LIST TOGETHER..OK.....TODAY HAD BETTER BE A BETTER DAY YESTERDAY I HAD PAIN SOOOO BAD THAT I COULD HAVE SCREAMED..... MY LEGS WOULD NOT WORK THAT SCARD ME BUT THEY ARE DOING BETTER NOW ...HOPEFULLY I CAN GET TO MY COUNSELING APPOINTMENT AND TO THE STORE..... FROM ONE DAY TOO THE NEXT YOU DO NOT KNOW..... LET ME KNOW IF YOU FIND THE ARTICLE AND STUFF I WILL START SOME RESEARCH FROM MY END ALSO SOFT HUGS TO YOU PAMTricia Skiba wrote: Lyn and Pam - I believe I recall reading at one point that Dr. Schwartzman in Philadelphia who is an "RSD specialist" as has great word of mouth as to his bedside manner and treatment of his patients, was diagnosed with RSD himself at one point. Of course, I'm losing my mind or am perhaps retrieving faulty memories, so you may wanna check that out Tricialynlorraine wrote: Hi Pam, Maybe we can make a difference! Does anyone know of a Doctor who has RSD??? This has been on my mind for the last week. With the reality of the numbers of people who are now being diagnosed we've got to have doctors experiencing this with us. He/she would have the personal upfront knowledge of what is happening in the body together with the medical knowledge of the systems at work. Any suggestions???I have started a sheet of paper hanging my my computer to collect my questions as they float through my mind. I tried to sit down and write a list and my mind went blank so I am approaching it from a different angle. Seems I've thought about this so much that I've created a closed loop and know I must break it. If you have any questions shoot them this way on the board or personal mail. I'll start a collection that we can then refine. Remember no question is "dumb". We are going on a fishing expedition! Love to you and hope you are having one of the better pain days, LynPamela Fredette <patches13033@y...> wrote:> HI LYN COUNT ME IN TOO I HAVE ALL THESE QUESTIONS ALSO SURE WOULD LIKE TO KNOW SO FIRE AWAY...MAYBE WE COULD TEACH THE DOCTORS A THING OR TWO....SOFT HUGS PAM> > lynlorraine <lynlorraine@y...> wrote:> Yes, let's explore this. I'll be thinking of questions that have > been floating around in my head. Hope your visit with everyone is > wonderful. I think you are there right this minute!> Lyn> > Ginny Barrientos <hisloss123@y...> wrote:> > Lyn,> > > > I am ready to find out all the answers to these> > questions..Maybe we should come up with a list of> > questions for all to answer in the group and compile> > the information we get and see how many people here> > have the same disorders other then RSD and how long> > they have been dx with everything including RSD and at> > what age they were dx with what they have been dealing> > with all of this. It will be interesting to see what> > everyone answers...I don't know how we can do a study> > annomously...so if people didn't want to participate> > they wouldn't have to. Let me know what you think and> > we can come up with a list of questions that we would> > like answered. Hoping you a wonderful snowless> > day...Hugs..Ginny> > --- lynlorraine <lynlorraine@y...> wrote:> > > > > > > > Ginny,> > > > > > I wonder about all this too. I think that I should> > > be a doctor > > > because I really want to figure this out. I have so> > > many questions, > > > so many observations that I feel like a detective.> > > Why do we get it > > > and others don't? What body makeup do we have that> > > promotes this > > > bizarre reaction to injury. What is the mechanism> > > and how does it > > > relate to other health issues and yes I want to do> > > the study > > > myself.........so I guess you've got a partner> > > whenever you are > > > ready to jump in! LOL Lyn> > > > > > Ginny Barrientos <hisloss123@y...> wrote:> > > The more we all talk about other syndromes and> > > diseases it seems > > > the more we all have in common...wondering if there> > > is a correlation > > > to why we all got RSD. Wish a dr would study why> > > some people get > > > RSD and why others don't and if there is a> > > predisposition and that's > > > why. I guess I should have been a dr...Maybe then I> > > coud do the > > > study myself...lol. > > > > > > >yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi Pam, I just wrote a note to Sharon asking for help to locate the author of the research paper that sounds so promising. Once I have that my Dr is very interested in reviewing the medical citations and then I plan on contacting Dr. Z as a start for his comments. As for the questions that probably float around in all of our heads I think we can each start by jotting down our own thoughts as a beginning and then we can share our lists with each other. For example I have this weird question about cold hands and cold feet. Prior to RSD I would be classified " with COLD hands and feet " . I use to wonder if the fact that my circulation was such that it contributed some way to RSD grapping hold of me. My initial symptoms after my injury was hot, burning, red, swollen but eventually what I called " freeze pain " reined. So I have often wondered how many others were " cold hands warm heart) before getting RSD. Anyway that gives you an idea about some of my questions. I don't know that the answer means anything. Another question is if RA is present in the family of RSD sufferers and how many family members have RSD? Another question that puzzles me is if we are predisposed to RSD why didn't it happen during all the other injuries experienced over a life time why now and not then? What is different? Well I'm just rambling now so I'll save you and quit! Let me hear from you when you are feeling better. So sorry you hear you have been in the TC (torture chamber) That stinks! I'll send my prayers and love your way. Lyn Pamela Fredette <patches13033@y...> wrote: > HI LYN I HOPE THAT YOUR DOING GOOD I WOULD LOVE TO HELP WITH THIS THEN MAYBE I COULD FIND A DOCTOR.... WELL LET ME KNOW AND WE CAN START PUTTING A LIST TOGETHER..OK.....TODAY HAD BETTER BE A BETTER DAY YESTERDAY I HAD PAIN SOOOO BAD THAT I COULD HAVE SCREAMED..... MY LEGS WOULD NOT WORK THAT SCARD ME BUT THEY ARE DOING BETTER NOW ...HOPEFULLY I CAN GET TO MY COUNSELING APPOINTMENT AND TO THE STORE..... FROM ONE DAY TOO THE NEXT YOU DO NOT KNOW..... LET ME KNOW IF YOU FIND THE ARTICLE AND STUFF I WILL START SOME RESEARCH FROM MY END ALSO SOFT HUGS TO YOU PAM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Thank you Lyn, it is getting a little better and I go and see my doctor tomorrow. It is called NINDS for short. The National institute of Neurological Disorders and Stroke. I love that it sounds like they threw in stroke as an afterthought. Lin Lin, Tell me more about the research place, if you would.HOpe you are doing better. I'm a bit worried about your recent episode of pain. With love, Lyn> Lyn,> I have cold hands and feet. But I am not sure if this has anything to do> with it because my RSD started in my left knee.> I think that they are looking for what triggers this disease at the research> place in Bethseda.> but I could be wrong.> Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Thanks Ginny, it actually did get better and then I went shopping to only 2 stores. But then I came home and I screwed up about a bill and Dwight who is under a lot of strain, especially since my LTD check didn't get posted, so either they don't consider me legible or they will be mailing it. So since he was leaving today for a week he was in a very tense mood, so my pain shot up over a ten last night and now a 9. So I plan to lay here in bed and do absolutely nothing except play computer games and write all of you guys. Ginny take care hope you have a low pain weekend. Lin Lin, You are very welcome. Sorry you have been having such a hard time lately. I hope that this flare up passes quickly for you and you get back down to a pain level you can endure....Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
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