Welcome to my Guestbook and I would like to say thank you all for signing it for me. It means alot to me and I enjoy meeting the people who have signed it and all the people that can see they are not alone in RSD!

Mary Alice McLarty - 12/13/00 23:26:10
My URL:http://www.maryalice.com
My Email:maryalice@maryalice.com

Comments:
Very nice site. Very tragic condition. I have been representing folks with RSD since the mid-1980s. I cannot know how you feel, but I do care. May God bless you and keep his hands on you.

Howard Faust - 12/10/00 02:55:35
My Email:hfaust@pa.net

Comments:
Hello sue, my name is howie i'm from chbg. pa. i got this stuff that is called rsd. I have trouble with it the pain, can't deal with it. I'm in the prossase of going to hershey on the 11th. of dec. I hope i can get better treatment up there than hear at h me base.Yes i could use someone to talk to about this monster,my friends that i have on the puter say that they wish they could help,i tell them i'll be alright tho, but not, just to make them happy. THank you very much . afa howie

Barb Cotton - 12/07/00 17:21:54
My Email:cotton@kwic.com

Comments:
love you home page I just found out after two years of suffering with pain from a injury at work that I have RSD found you page really help full and love the friend saying on it it made me cry would love to have a friend that under stands what people go t rouh with RSD thank again for you time Barb

beth - 11/30/00 22:01:32
My Email:ejb2463@yahoo.com

Comments:
i think it is great that i have a place to go and to find others with RSD,, i have had it for over 5 years now,,,and the Dr. Up here really dont know anything about it, it took them two years to find out what i had,, i live in maine,and i would like to t lk to you some time,, bye for now

Lloyd Cope - 11/26/00 22:21:57
My Email:lloydcope@msn.com

Comments:
You are right. I do have RSD, however I found your sight while hunting for information for my research paper. I have had RSD since March 6 of 1997. I hope everything is good for you. Well you know what I mean, as good as it gets when you have RSD. Good lu k and wishing you the best of holidays.

Cindy Dunning - 11/21/00 13:40:55
My Email:jeffcin@juno.com

Comments:
My husband was recently diagnosed with RSD. please keep up the good work.Cindy

Rhonda - 11/21/00 07:17:56
My Email:rbandjb4ever@aol.com

Comments:
Hello Ihave just recently been told I may or may not have RSD one but the Dr's are confusing me so much I have all the symptom's and am even sceduled to go see a pain mgmt Dr to start the blocks I am so scared and depressed i also feel as if i am going cr zy i am in constant pain all the time if you wanna talk please e=mail me thanks

Cindy Dunning - 11/20/00 21:30:09
My Email:jeffcin@juno.com

Comments:
Great info thanks. Cindy

sue - 11/17/00 07:48:05
My Email:suetov@altavista.com

Comments:
u r not alone always remember there are about 6 million of us. stay strong and if you would like email me. dont always get to it right away so be patient with me. hope it gets better suz

Nancy - 11/16/00 05:20:26
My Email:fannie41@hotmail.com

Comments:
Hi my name is nancy , Yes i have RSD in both my hands arm's and belive my back. Just need a friend to chat with. I have had this 11 years . Please drop me a note

Lisa Finney - 11/15/00 01:33:41
My Email:finney28573@coastalnet.com

Comments:
I just found out that Ihave rsd Ihave been trying to find out as much about it as I can.I am very scared . I got hurt at work and the doctors told me that I had sprained my footand they tryed to get me to walk on it I told him that it hurts to bad. now he says it's rsd please email me thank you Lisa Finney

Tammy - 11/13/00 03:00:53
My Email:Dragonfli5886879@aol.com

Comments:
My mother was diagnosed with RSD, only two days ago. Since then I have spent numerous hours on the internet trying to find information. I am amazed how many people out there has this disease. Thank you for the information you've provided. Right now every ittle bit helps.

Linda Carter - 11/09/00 21:28:31
My Email:clinda2@home.com

Comments:
I am 44yrs old and have RSD in my L foot and leg and it is now spreading into my R foot and ankle. I have had RSD for almost 4yrs and the pain is VERY BAD!!!! But I'm sure you know that. I can't work due to the pain and medications. I can only hope and pr y for a cure. Good luck and hang in there. Linda

Linda Carter - 11/09/00 21:28:25
My Email:clinda2@home.com

Comments:
I am 44yrs old and have RSD in my L foot and leg and it is now spreading into my R foot and ankle. I have had RSD for almost 4yrs and the pain is VERY BAD!!!! But I'm sure you know that. I can't work due to the pain and medications. I can only hope and pr y for a cure. Good luck and hang in there. Linda

Jeanie - 11/05/00 05:44:46
My Email:cdes514012@aol.com

Comments:
Sue I've been fighting RSD for almost ten years now thanks for being there. Your web sight is beautiful

Tanya Kalos - 11/04/00 18:11:03
My Email:t_kalos@hotmail.com

Comments:
HI my name is Tanya and im 11 years old.I have rsd all over my body.It started when they put a needle in my leg for my Arthritis,But they did not put it in the right way.If anybody needs a friend out there,I would love to be your friend.I live in Nova sco ia canada.Please e-mail me at t_kalos@hotmail.com Sincerly TANYA GOD BLESS ALL OF YOU

LINDA - 10/29/00 23:32:10
My Email:LITELFOOT@AOL.COM

Comments:
HELLO, I'VE HAD RSD SINCE 1983 I HAD SURGERY IN 1990 A SYMPATHECTOMY I THINK I SPELLED THAT RIGHT, BUT I WAS 80% BACK ON MY FEET WENT BACK TO WORK AS A REALTOR AND LIVED A PRETTY NORMAL LIFE. THEN IN 3/98 WHILE WORKING AS A REALTOR I FELL OFF STEPS COMING OUT OF THE OFFICE BUILDING. I AGGRAVATIED THE RSD AND I'VE BEEN IN LIVING HELL EVER SINCE. I'M IN A WHEEL CHAIR WHEN I LEAVE MY HOME AND I FEEL LIKE I'M TRAPPED IN A BODY OF PAIN.I'M 52 YEARS OLD AND THE DOCTORS ARE TELLING ME SINCE I HAD SURGERY THERE IS NOTHING THEY CAN DO EXCEPT TRY TO CONTROL MY PAIN LEVEL. I WEAR MORPHINE PATCHES AND TAKE 3200MG OF NEURONTIN PLUS OTHER MEDICATION. DEPRESSION IS A BIG PART OF WHAT I HAVE TO FIGHT. I HAVEN'T DRIVEN SINCE THE ACCIDENT. I CAN ONLY LEAVE MY HOME WITH ASSIS ANCE. I'D LOVE TO HEAR FROM YOU AND OTHERS WHO LIVE AND FIGHT THIS TERRIBLE DIEASE EVERYDAY OF OUR LIVES. YOUR FRIEND LINDS

LINDA - 10/29/00 23:31:00
My Email:LITELFOOT@AOL.COM

Comments:
HELLO, I'VE HAD RSD SINCE 1983 I HAD SURGERY IN 1990 A SYMPATHECTOMY I THINK I SPELLED THAT RIGHT, BUT I WAS 80% BACK ON MY FEET WENT BACK TO WORK AS A REALTOR AND LIVED A PRETTY NORMAL LIFE. THEN IN 3/98 WHILE WORKING AS A REALTOR I FELL OFF STEPS COMING OUT OF THE OFFICE BUILDING. I AGGRAVATIED THE RSD AND I'VE BEEN IN LIVING HELL EVER SINCE. I'M IN A WHEEL CHAIR WHEN I LEAVE MY HOME AND I FEEL LIKE I'M TRAPPED IN A BODY OF PAIN.I'M 52 YEARS OLD AND THE DOCTORS ARE TELLING ME SINCE I HAD SURGERY THERE IS NOTHING THEY CAN DO EXCEPT TRY TO CONTROL MY PAIN LEVEL. I WEAR MORPHINE PATCHES AND TAKE 3200MG OF NEURONTIN PLUS OTHER MEDICATION. DEPRESSION IS A BIG PART OF WHAT I HAVE TO FIGHT. I HAVEN'T DRIVEN SINCE THE ACCIDENT. I CAN ONLY LEAVE MY HOME WITH ASSIS ANCE. I'D LOVE TO HEAR FROM YOU AND OTHERS WHO LIVE AND FIGHT THIS TERRIBLE DIEASE EVERYDAY OF OUR LIVES. YOUR FRIEND LINDS

Glenn Kissinger - 10/24/00 00:23:48
My Email:paragon53@ispchannel.com

Comments:
It's refreshing to see your outstanding efforts.

robin - 10/20/00 14:03:14
My Email:da-kidd@msn.com

Comments:
hi there i too have rsd since 1995, i am so glad there is so much info on this, back then you could not find hardly anything on it or support groups as well thank god we do now. robin wardlow humble texas

Howie - 10/17/00 15:14:10
My Email:hfaust

Comments:
Hi my name howie i'm from chambersburg,pa..I have this monster so called rsd. I would like to talk to you if i could and become a friend .I'm trying to find support groups to go to and talk to somebody.I really enjoyed your web sites. Thank you again howi .

Howie - 10/17/00 15:14:00
My Email:hfaust

Comments:
I'm 24 years old and have had rsd for 7months now. it would be nice to talk to someone else with this so i guess you could say i could use a friend thank you. Your friend Carrie

judy walker - 10/11/00 18:07:06
My Email:judywalker@fortna.com

Comments:
I was just diagnosed for RSD yesterday. I don't know how long I've had it, but I've had pain in my knee and lower leg for the past 5 years. I'm kinda scared.

Cindy O. - 10/11/00 05:28:53
My URL:http://@WEBTV.COM
My Email:BOEBOESGIRL

Comments:
GOOD MORNNING ,It's 1:30AM just found your site. I to have been suffering from RSD since FEB. 1997. Folling a car accident,I have been to countless doctors, Iam on, I think the max of meds, to tolorate the pain. I have never talk with anyone on the web before you are the first. 'am going to read some of your site tonight and return tomorrow night.It was nice to say HELLO to afellow RSDer. But some how it is scarry to,for me.I tryed to in the beginning of this year.When I first got my web tv.But I could ot. SO you are my first friend and contack. With broken smiles and SUNSHINE CINDY O.

Don Payne - 10/10/00 23:57:54
My Email:dbpayne@mediaone.net

Comments:
Thanks for our site and your support. I will write soon. I too suffer from RSD. I live in the suburns of Detroit, Michigan.

Anneke - 10/09/00 13:27:52
My Email:ap.junior@virgin.net

Comments:
I'm a nurse and don't know a lot about rsd, but are interested to learn more. All the best for all you brave people out there

Sue - 10/07/00 02:35:10
My Email:dswilt@globalfreeway.com.au

Comments:
Hi, just dropping in again, I live in Australia and I don't know of anyone else with this wretched condition here. I am feeling alone at moment and it is nice to read about ppl with this as well. Would love to chat with others who has RSD as well.

pamela - 10/06/00 14:33:47
My Email:judd

Comments:
I've had rsd since 1994,I'm still hanging in there and so can you

Barbara Mazzanti - 10/04/00 15:24:31
My URL:http://www.sendmoreinfo.com/id/1344591
My Email:barb2406@hotmail.com

Comments:
This is a great websit, I have visited many RSD Websites and this one is a class act.

howie/2tall - 09/29/00 14:59:37
My Email:hfaust@pa.net

Comments:
i don't think i had my whole e-mail address on right?if i did don't pay no attension to this comment. thank you 2tall.

howie/2tall - 09/29/00 14:52:35
My Email:hfaust.

Comments:
i just started looking at this sight so i'm sure it's going to be up lifting to me. i've been diagnosed with rsd for about 1yr. and it's been hard i just like to find somebody to talk to that is dealing with or has had it. thank you very much god bless.
shirley meggs - 09/28/00 22:06:50
My Email:shirleysdollworld@juno.com

Comments:
i have been told i have rsd also and i am going through hell . its nice to meet you. signed shirley

Sandy - 09/26/00 19:44:14
My Email:sandra_w93555@yahoo.com

Comments:
I just found out I have RSD and this thing has made me loose friends, sometimes my sanity,and my family is really having a hard time understanding. I could really use a friend thanks.

howard e faust - 09/26/00 13:25:07
My Email:hfaust@pa.net

Comments:

Larry T - 09/22/00 01:42:55
My Email:sixty8cadman@yahoo.com

Comments:
I have recently been diagnosed with RSD,back in"96" Iwas removed from work, have had several sugeries now being diagnosed with RSD in my right arm and possibly spreading. Trying to learn as much as Ican about it.

Allison - 09/20/00 22:30:38
My Email:alikat456@hotmail.com

Comments:
Hi, I too have this monster RSD. I am currently undergoing nerve blocks that aren't going to well. The first one worked a bit and the second one didn't. I am goin in for the third one tomorrow, and who knows how it will work out. I am currently taking a whole bunch of medications to try and get me thru the times between treatments, and I spoke with one of the nurses today and she said she was very surprised that they haven't hospitalized me yet. I have had to withdraw from college, and put a hold on m dreams. I hope to talk with you all soon. Take care.

Sandy - 09/20/00 05:25:01
My Email:sandy1065@yahoo.com

Comments:
I would like to email with you and some of the people here. I also live in Penna. (Scranton). there are no Drs here that know much about RSD, So it would help me alot to know that I am experencing the same as other people. Hoping to hear from some one. Thanks, Sandy

BETTY WILLIAMS - 09/20/00 04:48:05
My Email:BETTOM@BLUERIDGE.NET

Comments:
BEAUTIFUL SITE

Terri - 09/20/00 02:44:53
My Email:tcraib@worldnet.att.net

Comments:
Love your site. Have had RSD since 1996 in my rt. foot, then up my rt. leg and into my hip. Have had numerous lumbar blocks,sympathectomies and gangliotomies. I then had bilateral carpal tunnel surgeries, and you guessed it, developed rsd in both hands and arms. Went through stellate ganglion blocks and 20 bier blocks in my rt. hand, than 15 in my lt. hand. Now I,m having severe pains in my neck and lt. shoulder. I just had an occipital block with epidural and something else, I just forgot. I do a lot of that, too. I just wish all of us love, understanding, and just hope.

Edmund Wolfe - 09/19/00 16:12:42
My Email:wolfe1020@yahoo.com

Comments:
Just looking and trying understand the Monster in me thanks for your help 7 years now,looking for something trying to cope. Ed W. MPLS, MN

John Ogden - 09/15/00 23:02:00
My Email:jandcogden@freedsl.com

Comments:
I am dealing with RSD also. I just want to say Hi.

Deborah Buchanan - 09/15/00 02:01:44
My Email:wmdeborah@aol.com

Comments:
Beautiful web site. Good to find others dealing with the same thing. I have it in my hands and arms - more than 2 years now. I live in OK, by the way. I was able to get disability and SSDI. That was a great relief. Well, anyway it is a nice site and you d d a great job.

- 09/14/00 07:10:24

Comments:

SueMess - 09/11/00 15:57:16
My Email:messsg@aol.com

Comments:
Very nice website. I am in the process of having tests done etc. to see if I have RSD. If this proves to be true I pray I am in the beginning stages.

Beverly - 09/10/00 20:11:36
My Email:GodzAngls@aol.com

Comments:
My name is Beverly and i have had Rsd now for 61/2 years and have never had a support group to chat with i got to Lubbock to a RSD Dr. and he has really helped me but i would love to chat with others that know what i live with 24-7 i have the support of m family but they really dont know the pain im in if you never have experianced it you cant know the pain thank you for your warm site.....Beverly

Sue - 09/10/00 07:03:54
My Email:dswilt@globalfreeway.com.au

Comments:
Hi Sue We have two things in common, we both have RSD and we are both named Sue. I have had RSD since 1995 when I injured my wrist at work, I have been thru the frustration, anger, am I going crazy, is this all in my head, life isn't worth living lets just end it, now I just cope from one day to the next. I am having Stellate Ganglion Blocks in the neck at present, I do get some relief from that for a few months. I use a pain medication (Mersyndol Forte) with a drug in it called 'doxylamine succinate' It is a muscle relaxant and although it doesn't make the pain completely go away, it is better than nothing, it allows me to get some sleep, I also use herbal sleeping teas and I have lavender&epson salts baths. I think you have a great site and keep up the good work, it is nice, wonderful to know, you are NOT alone out there. Thanks Sue

Kristi - 09/08/00 09:45:58
My Email:197girl@mailcity.com

Comments:
Thank you for this site... RSD sufferers need to stick together.. good luck, Kristi

Gail Joly - 09/06/00 20:41:22
My Email:gapw13@aol.com

Comments:

sharon - 08/31/00 17:33:20
My Email:spiderflower@webtv.net

Comments:
I am 48 years old and have RSD resulting from a broken ankle. I need a place to interact with other RSD sufferers!

Francine - 08/30/00 16:47:02
My Email:francine@cyberspy.com

Comments:
I did not go through your entire page but from what I have seen you have put a lot of time and effort into it and I applaud you for it

Linda Sutherlin - 08/29/00 04:01:50
My Email:rlbjh4386@webtv.net

Comments:
I was just amazed at all the people who have posted. It seems like just a few years ago, there was nothing written about RSD and now there is more and more, thankfully. Let's see, I have had RSD since 1993 and had it three years before I was diagnosed. You know same old story. I broke my foot and that is when it all began. I have had five surgeries on it with the last leaving me unable to walk for over a year. We later l arned that the MD who did the surgery has more lawsuits against him than any other MD in this state!!!! Wish we would have had the information before I let him put the knife to me! HA I am doing o.k. for the most part I am currently in remission, once in while I do have a flare up. I have a wonderful MD who has been nothing but supportive. Well, that is my story, I do pray for all those with RSD and those yet to come and join the family of RSD. Sincerely, Linda Sutherlin

Paulette Anderson - 08/27/00 18:54:23
My Email:panderson_15438@yahoo.com

Comments:
Found your sight surfing and really enjoyed it.I'm also from Pa. This is one disease that you wish no one else had but you need others that understand what you are going through. When diagnosed 14 months ago after breaking my right foot I was scheduled f r more surgery on my left shoulder within 2 weeks of my diagnosis and wanted to know if RSD would spread. (Two Dr.s told me that it does not spread then afterward said "oh your RSD must be spreading"). I couldn't find anything about RSD. I called every ho pital /health center that I could find listed and was told there were no support groups "you should start one". My daughter-in-law researched online for me while working on her doctorate and I found Mary's number at the RSD Coalition--called her and talk d for hours, I found Susan who said she would help me too so I did start a group. Our local hosiptal has donated a room. We have had nearly 30 people come to our meetings since last Dec. We have alot to learn and it has been such a blessing to be able to et support from people just a few miles or a phone call away. Making close friends has been the positive part of this horrible affliction. I'm fortunate even though I rebroke my right foot 3 weeks ago and it flaired up a bit it is mild compaired to when I first got it.I still pray for all who are in much pain.

Paulette Anderson - 08/27/00 18:24:05
My Email:panderson_15438@yahoo.com

Comments:
Found your sight surfing and really enjoyed it.I'm also from Pa. This is one disease that you wish no one else had but you need others that understand what you are going through. When diagnosed 14 months ago after breaking my right foot I couldn't find a ything about RSD. I called every hospital and health center that I could find listed. I was told there were no support groups why not start one. My daughter-in-law researched online for me while working on her doctorate and I found Mary's name at the RSD oalition--called her and talked for hours.I found Susan who said she would help me and I did start a group. Our local hosiptal has donated a room. We have had nearly 30 people come to our meetings since last Dec. We have alot to learn and it has been such a blessing to be able to get support from people just a few miles or a phone call away. Making close friends has been the positive part of this horrible affliction. I'm fortunate that my Rsd right now is mild but I still pray for all who are suffering.I eed help know from those of you who are involved with support groups--did you go non-profit? Is there much of a cost to go with the 501C3? We really don't have any money to work with and I'm not sure if the 10-15 of us are ready to get more involved.

Nola Thomason - 08/26/00 03:37:32
My Email:thom04@midwest.net

Comments:
Dear Sue; Hi! I Love your page; It is really super!!!!!Thank you for caring about me, and being my friend!!Don't Ever Forget That---You Have A Very SPECIAL Place in God;s Heart---And in Mine!!! I'm praying for you! Love,~Nola~

Donna Czarnecki - 08/24/00 05:40:54
My Email:djczar@webtv.net

Comments:
Enjoyed your home page.

Charles Gadberry - 08/23/00 16:52:46
My Email:Charles_g_34743@yahoo>com

Comments:
HI my name is Charles but I go by my middle name Mike. I have had rsds since my 3rd back surgery on good friday 1996. I was told by my surgeon that it would be better in a year so after my so called recovery I went back to work in July of 96.I hurt but I as dermined that I was going to have a normal life I worked for one year and the pain got so unbearable that I could'nt handle it any longer so I went back on workers comp and had the fight of my life to stay on it. A year later I was approved for SSD (Th nk God and my careing and loveing wife Debbie). For those of you who are still fighting for SSD the best advice I can give is have a doctor that trully understands rsds after all thats the only kind that will be able to help you in your treatment anyway, also it helps to have a good lawyer well versed n SSD laws. My wife and I are more than 4 years into this terrible nightmare and I wish I had answers but through all my treatments we have yet to find them but having said that we will continue to fight the good fight of faith and we will overcome. I wish you all pe ce and relief Mike.

- 08/20/00 13:15:45

Comments:

Mag - 08/19/00 00:32:32
My Email:onedge44

Comments:
I'm trying to write a message but keep getting kicked off.I will try to get next message across.If I can I will try again later.

Sue Wolf Pugh - 08/18/00 23:37:37
My URL:http://www.crosswinds.net/~homeofsue
My Email:cpugh67126@aol.com

Comments:
Sue, Hello my name is Sue. I also have a RSD Web page along with my Native American Heritage and Angels, My Favorite Music, Galaxies, etc. I so enjoyed seeing your site that I pulled up under RSD General Search. I wish you the Best. I have had RSD since 1993 first in both legs, then both arms, then back, buttocks, neck, and now FULL BODY SYSTEMIC. I also have a support group affiliatd with RSDHope. I wish you always the best. Go always in Peace my Friend Solace Sue Wolf Pugh :)

Chris - 07/27/00 07:46:16
My Email:owen894@earthlink.net

Comments:
Hi Sue and fellow people that suffer with RSD! I was just recently been diagnosed with RSD, about a week after my cast was removed, and since then, have been in a brace. I've been seeing several Dr's, started out with a foot and ankle specialist, physical therepy, although they haven't been able to d too much, then a nerologist, then in another week. I will see a orthopetic. My left foot (the one that was injured after a fall off of a horse) is really painful all of the time! It is red and has been, for over a month now, I get a sensation like bee stings, constant acheing, knumb toe (this is the least if my complaints), a vi ration feeling and pins and needles over my foot and leg.It just hurts! I think there is a problem with my medicarsal bone,some joint that is extremley painful to the touch.. so that's why I'm going to see a orthopedic. But I am rel tired of this and want to get on with my life! Please tell me this will get better! Thanks for listening to me, sorry for complaining! I am at my wits end because no one seems to understand the great amount of pain that I've been in for a year now! I am on Neuotin medication and it seems to barely take the edge off. I don't want to complain to my family and friends, but I don't think th y understand...I really don't either!

Gail Kindle - 07/18/00 21:09:12
My Email:Popeye86@earthlink.net

Comments:
I know how you feel. I wish that I knew what this horrid disease was years ago. I have wasted so much time, and of course. no matter what anyone did or said, or medicated me with did not work. I was recently diagnosed with this horrid disease, and I am still having trouble believing what it is and what is does. I have trouble sleeping, and coping with this pain , severe, severe pain, enough to wish that my arm and hand were cut off. No matter what medicine, treatment or whatever is left I have tried a d nothing seems to help. Got anything helpful that you do or take,(any good drugs), I need help and a friend. No one in my family seems to understand, even after reading some articles that I have. I would appreciate it if you would like to write back. Thanks, Gail Kindle Popeye86@earthlink.net

Linda Loy - 07/10/00 03:04:09
My Email:lindaloy@yahoo.com

Comments:
I have rsd in my left arm. I am doing pretty well. I have a spinal column stimulator. E-mail me anytime. Linda

runningwolf - 07/05/00 22:56:13
My URL:http://runningwolf23@yahoo.com
My Email:runningwolf23@yahoo.com

Comments:
i need a friend i am native maerican and have rsd in both legs i can not walk. if you know some one in clearwater fl that has a group let me know love tom

ang - 07/01/00 11:50:46
My Email:ang@penzance.freeserve.co.uk

Comments:
Hi, everyone, My name is Ang. I was diagnosed with RSDS recently after an accident at work, I fell off the next- to- last step on the stairs. This caused a severe sprain. I think RSDS set in almost immediately, the cast was agony where it touched my ankle. Anyway, after 3 months of physio they finally realised it was not healing and diagnosed RSDS, much to my relief because I thought I was going mad. A tremendous amount of pain and swelling later and I have an appointment to see the Pain Management Doctor in August. I really do not want any injections are there any alternatives to relieve the pain? I am taking Diclofenac tablets and vitamins. I also have use of a TENS, which helps by distracting the pain. I get very little sleep and am in constant pain. Recently I have started getting pain in my shoulder, also I have noticed 2 toes on my other foot going numb. I would welcome any information or emails. I am not able to go back to work, have two children and am a lone parent. Love, Ang.

Darla - 06/23/00 01:53:57
My Email:dje0665@aol.com

Comments:

Jim - 06/09/00 03:02:50
My URL:http://www.angelfire.com/oh3/neohiocop
My Email:neohiocop1@aol.com

Comments:
Hi Sue. Your site is very informative. I was diagnossed with RSD in December of 1999 after having surgery to repair a torn scafolunate ligament in my wrist which I injured at work. Since then I have had blocks and am on medication and have just started pa n management. So far I have gotten very little relief from the pain and I also have lost any movement in my wrist. I'm hoping to talk with other who have RSD and are in similar circumstances as mine. I have been looking for an RSD chat site but so far I'v found none. Thanks and Good Luck Jim from Ohio

gloria - 06/04/00 13:01:13
My Email:rogersmom@hotmail.com

Comments:
hi I just found this site. i will be back often. I have had RSD since late July 99.

roger eutsler - 06/01/00 04:02:30
My Email:rogereutsler@cs.com

Comments:
I want you to know that you have a very good website.I look at it a lot .

jodi armendariz - 05/25/00 12:27:16
My Email:ky_52@hotmail.com

Comments:
hi sue, like u i have suffered with RSD off & on for the past 6yrs..Each day..there is pain somewhere in this body. Sometimes i try to ingore it. I went through pain mgt. and all that other stuff in the past. I have been off medicine for the past 3yrs..This is my choice. I rather live with the pain then be doped up.My husband can not massage me hard enough..or long enough. Sometimes the doctors make me so mad.I guess that is the reason why i don't go anymore for treatment.They all think if you go through the r plan..you should be cured. Then the insurance companies only allow a certain amount of treatment during that year. So , in a sense, I feel that I am dealing with this alone. What hurts me worst is that I used to be very active. Now, it takes me forever o get a chore or task completed. Needless to say, I have a type a personality. I guess I will close for now,hands starting to miss the keys. Take care. Thanks for listening.

Belinda Wurn, P.T. - 05/23/00 20:14:25
My URL:http://www.clearpassagetherapies.com
My Email:Belinda7@aol.com

Comments:
You did a great job on your website! It is just beautiful! I am a PT in Florida, and I am actually online looking for info for a patient who has RSD of her right arm. Any great links you have found? I need to write a report for her physician, and she wants to settle her auto case. This means the MD must declar her at MMI (maximum medical improvement.) I want her to continue to receive her medical benefits from her auto ins. Any experience with this? If so, PLEASE write! Good luck. Belinda

kathie krone - 05/20/00 21:19:21
My Email:kathiekrone@home.com

Comments:
my 17 year old son has just been diagnosed with rsd. will he ever be able to be active again? what lies ahead of us?

Barbara Haskell - 05/20/00 01:55:08
My Email:bdhaskell@earthlink.net

Comments:

DEBBI HOAK - 05/18/00 22:40:20
My Email:dhoak753@earthlink.net

Comments:
I have been an RSD sufferer for nearly 3yrs. Although, it was only diagnosed 2wks. ago!! And unfortunately, after an unnecassay surgery for thoracic outlet, which of course was unsuccessful to say the least! It has now spread to 3 limbs, as well as my bac - which is where it started, from a minor back strain. My worst problem (besides all the pain,anxiety,insomnia,drug side-effects, etc...)is that my doctor will not address the pain anywhere except in my right arm, which is the side i had the rib removed f om. Because i believe, he and the 6 other docs i have seen in the last 8mo.s, are running scared from the malpractice liability. In the meantime...I am suffering and deteriorating at an incredible rate!! They are only "digging their own professional grave as well as my literal grave! I am only 30yrs. old! And a mother of 3. My quality of life is NILL. I know how important PT and excersise are, but it is sooo difficult to even get out of bed, or move from a chair i have been sitting in for any legnth of time, as i'm sure you know! My p ysical therapist doesn't even know what RSD is!! Also, I go to the only pain clinic in my area, and I feel that I know more than this "so called" expert! If i can research and find this info, why don't they know it?? Isn't that what we pay $200 an office isit for?????? Can you give me any advise on any other RSD docs in the Boise Idaho, area? And can you give me a good link for support for family and friends of an RSD patient? Also, do you know of any attorney's that specialize in these sorts of malpractice cases? I was referred for surgery after 3PT appt.s and ABSOLUTELY NO TESTING, such as EMG's, MRI - NOTHING!!! PLEASE, can you help me find some answers and save my dwindling sanity?? Thank you, Debbi Hoak

Dee - 05/16/00 01:50:56
My Email:zebress@aol.com

Comments:
Thank you for the words of HOPE. My life has not been the same since RSD took over my world in Nov 98. I am fighting my job about my care and all the medical bills I have because of my injury on my job that caused my nightmare of Rsd. I had never heard of RSD, before this happened.I go to the Hospital every week for pain blocks and lots of meds. I try very hard everyday not to give up. I have a Great Doctor that I found last Sept. that sent me to the Hospital, and I have a Great Dr.there. By the way I live in Ohio. God Bless You

Carole Hassell - 05/08/00 16:14:33
My Email:thehassells@compuserve.com.uk

Comments:
Dear Sue, as you can see from my e-mail I live in the UK, we have nothing like this over here. I was diagnosed in 1992, but it is believed that I have had it much longer and was misdiagnosed. It is great to know that I am not alone. I married 3 years ag and was in remission until recently my poor husband he was more scared than I was. I have two bad attacks in six months but so little is know about it in the U K. But my symphathies go to people in South Africa, I was there for one attack and no treatm nt was avaible nor was anything know about it. Now back in the UK so at least I can receive somthing even though a lack of understanding is apparant. For many years I was treated like an idiot as if I was making it up, but being diagnosed was like a rel ef. Perserverance and stubborness is how I survive. Nice to know your out there, pherhps some one would e-mail me I know of no one else within my circle who has it and my family (except hubby) cope by ignoring it. Hope to hear soon. I prefer to think we are special rather than cursed, that doesn't always work on bad days.

Deborah Winslow - 04/28/00 02:30:12
My Email:dwinslow@gateway.net

Comments:
I pray my following information will help someone, anyone out there. My mom was diagnosed with RSD. Her doctors have helped her a lot. I don't know if I can print there names on this site but if you e-mail me, I promise I will send the names/phone nu bers to you. Also, there is a site www.rsdhope.com and roomblue@megalink.net that may be of help to you. I don't know any of you but my heart aches for you and many prayers go out to you. Try to survive this horrible disease. Prayers and peace to all f you. Love and Prayers to All....Deborah PS. This is an absolute beautiful site.

jamie - 04/27/00 00:19:05
My Email:big stonze@mail.com

Comments:
i was diagnosed 3 months ago and it just keeps getting worse i'm scared and concerned about my future, plus having to deal with this on a daily basis. how long have you had this? what has worked for you? hope to hear from you

CARRIE WHITT - 04/24/00 02:03:57
My Email:WHITTS1@AOL.COM

Comments:
WOULD LOVE TO CHAT WITH YOU

Donna Williams - 04/22/00 18:14:51
My Email:dwill8433@aol,com

Comments:
My daughter has RSD @14, now 18. It has changed my life our lives forever. She had 2 really bad yrs. Now in remission for awhile. My heart goes out to any one with this disease.

Ed - 04/22/00 08:08:25
My Email:albrechteg@aol.com

Comments:

- 04/20/00 22:40:46

Comments:

Littlerob1956@yahoo.com - 04/20/00 04:44:36
My Email:littlerob1956@yahoo.com

Comments:
Hi Iam robin I live in usa and i have RSD since 1998 JAN and I go to court in may I am looking form info to help w/ case i have it in left arm right arm and left leg for sure

spr - 04/19/00 01:06:47
My Email:ktsmomus@yahoo.com

Comments:
Love your webpage,keep up the good work. My husband has had rsds since 1997 after having had a broken neck in a car accident. the monster started in his hands and spread to his feet, and is now spreading over his whole body.has had blocks, medication and ow trying alternative medicines.thanks again for your web page.

ALICIA LYNN - 04/17/00 20:06:12
My Email:BONNYLIN@EMAIL.MSN.COM

Comments:
HI MY NAME IS ALICIA. I HAVE HAD RSD SINCE 1995. THOUGH IT WAS REALLY BAD IN 1995, I STILL STRUGGLE TO THIS DAY EVEN KNOW IT IS NOT AS BAD AS IN 1995 WHEN IT FIRST DEVELPOED. JUST STAY STRONG AND KEEP THINKING ONE MORE DAY. I ALWAYS BELIEVE GOD ONLY GIVES YOU WHAT YOU CAN HANDLE. I KNOW NO ONE CAN HANDLE THIS DISORDER, I BEARLY CAN. BUT TO ANYONE THAT HAS THIS AWFUL, HORRIBLE DISORDER PLEASE LOOK TO GOD FOR COMFORT. IF YOU EVER NEED TO TALK PLEASE EMAIL ME AT BONNYLIN@EMAIL.MSN.COM OR RUMRUNNER37@AOL.COM THANK YOU AND MAY GOD ALWAYS BE WITH YOU ALICIA LYNN

dawn - 04/15/00 01:26:43
My Email:adriegert@ez-net.com

Comments:
Just want to tell all that I felt that I was nuts!Glad to know, I am not.THANKS!!

dawn - 04/15/00 01:18:07
My Email:adriegert@ez-net.com

Comments:

Beverley Brooks - 04/10/00 20:57:48
My Email:Goldwing@ipswich.brisnet.org.au

Comments:
Hi I have had rsd now for 22months and Im Just about at the end of what I cane take. I have it in the ankle and the pain just goes on & on. I dont sleep and cry all the time and after so long your family think tablets will fix it. the ankle looks normal now. but still swells and changes colour. but it is the pain that really gets to you in the end you will be like be thinking that there is only one way out my life as I have now is not what I want, you feel so usless. I use to go every where on a goldwing m/c I havent got on it since this happened. its like life has stoped My name is Beverley Brooks and thank you for you time

Jeanie - 04/10/00 01:55:55
My Email:cdes514012@aol.com

Comments:
Thanks for this beautiful page

Lynn - 04/07/00 12:41:16
My URL:http://home.talkcity.com/CarpoolLn/lynntjc/index.html
My Email:Lynn5518@yahoo.com

Comments:
Hi, I just wanted you to know that I feel for all of you with RSD,I know very little about it . But I just met James Talaska through IM and I am trying to be a friend.And I can be one for you also.I sure hope things get better for all of you soon!

Jenny - 04/03/00 01:59:35
My Email:coolcats@bmts.com

Comments:
Dear Sue, WOW !! I am overwhelmed by your website and all the comments in your guest book. Its not the fact other are too suffering, But I was feeling like some sort of mutent. No one here ( in Owen Sound, Ontario Canada ) Knows squat ! My Doctor treats the intense pain with pain killers but I've had rections to most of them and the ones that I havent reacted to lose their effectivness. PLEASE ! Someone give me some names of pa n meds that you gave tried with sucess.I am so tired of this. I am depressed and my arm looks like some thing from a horror movie. I have not worked at my great job as a veterinary asst.since the accident (May 17th 1999) I fell off a latter and my arm was so swollen it developed onto compartment syndrome and went thur a zillion surgeries. It has since turned into RSD Thank you for your wonderful web site, Now I know I am not alone and not a mutent !

cary armstrong - 03/31/00 19:23:38
My Email:carya1@msn,com

Comments:
HI, My web page is down for redesign. My name is cary, I also have RSD and probably went though some of the same things you did. My RSD started in PA. I am now in daytona FL. I run a support Group for chronic pain here. My ph. is (904)761-3059, feel free o email or call at any time you can never have to many friends Have a great day, cary.

christine roberts - 03/25/00 06:41:32
My Email:chrisro@stargate.net

Comments:
H i I have rsd an i have no life.I live in Elco,Pa.this pain is destroting my life making me someone i amnot.i hope we will get help to get our life back.where do you live in pa.i would like to hear from you i am 44years old.your friend in pain chris

cathy smith - 03/22/00 02:49:12
My Email:smithjoca@bright.net

Comments:
have sent you a letter (book, actually!) What a beautiful web site!

Liz - 03/15/00 02:10:31
My Email:jbren52@yahoo.com

Comments:
Hi I'm just finding out that there are so many great people on these sites who can make you feel your not the only one fighting this RSD pain. I have had it for 6 years in my leg after a bad knee surgery and I'm very luck to have a great dr. in Rochester ew York who is trying everything he can to help me, But I sure wish I knew of some ways to get my family to understand how bad this can be on our bodies, some days I feel so alone because they just think it's all in my head. Thanks for this wonderful site it has sure helped me to know I'm not alone after all. Do you have any information on the morphine pump from anyone, thats my next step

LIsa - 03/14/00 17:33:59
My Email:lisagregr@hotmail.com

Comments:
Hey! I just recently was diagnosed with RSD following a minor accident where I twisted my ankle. It has NOT been fun!!! But I have finally found a Pain Specialist who is helping me. I have had the first of 6 Paravertebral Blocks -- and though I don't elish the fact of having to go through that again (UGH!!), I do believe I'm getting a little relief from the treatment. I would love to get any information you have. Please feel free to email me at the above address. Thanks!! Have a great day!

cheryl - 03/11/00 21:02:04
My URL:http://pages.ivillage.com/bh/chitchat9/index.html
My Email:ChitChat9@aol.com

Comments:
You have done an absolutely beautiful arrangement of your website. My 6 yr old daughter has been diagnosed with RSD and Spondylo-Arthritis .. both of which became apparent after a bad case of the flu and asthma/bronchitis. We are in the midst of wanting to get a 2nd opinion and in my quest for information have come across this extraordinary website. Peace to you and your love for life from within .. you website has truly shared a very personal part of your life with the "faceless" friends of the cybernet and for this I truly commend you and your strength and courage. Regards, Cheryl

Kathy (Lisa's mom) - 03/09/00 08:14:06
My Email:alward@frontiernet.net

Comments:
II am an R.N. and Lisa's mother. Lisa was stricken with RSD while a student at a nearby college campus. She had one semester left in a music teacher program. She stuck it out for 2 semesters, but now she is home. It has been a battle getting her the healt care she needs. I had an attorney and had to fight the insurance company. Her symptoms are more controlled now with recent SCS surgery and medication. Each day is a battle with the RSD. Thank you for your wonderful encouraging website.

Lisa - 03/09/00 07:59:02
My Email:alward@frontiernet.net

Comments:
I enjoyed your website very much. It is uplifting and inspiring for me. It helps to know that others are going through the same thing you are and that you are not alone.

Jeanie - 03/07/00 03:42:58
My Email:cdes514012@aol.com

Comments:
Yourpage is beautiful, RSD has taken over my life as you probaly well can understand, I've had this awful disease for nine years now, an have had nothing but trouble from the workers comp. they are now accusing me of fraud. Oh well just another battle I h ve to fight.

DARLA J. GREEN - 03/02/00 07:07:05
My Email:wegren@mindspring.com

Comments:
I am researching this phenominum. I had 1st surgery 9/97. Severe spinal cord compression @ c5-6 & 6-7 adcf both levels. Intense pain & scapula winging (shoulder blade pops out with any movement) this did not occur until after surgery. Right side. To make short story pain has progressed constant intense & worse with even simple activities (brush hair, put things up hold a booketc..) 2nd surgery posterior decompression & c6-7 to refuse june 99. Pain worse cant do anything but sit on couch. On oxycontin 40 /d. Doesnt help. Now they are talking about surgery to transfer shoulder muscle & anker shoulder bone to rib cage. Thinking long thoracic nerve stretched from postioning in 1st surg. Emgs chronic deinnervation. Not going to get better. They are guessing n w at the fix. I feel they are ambivalint about the degree of pain I express. I am 43,if not for my 6yr & 12 yr old, husband & family I would not be here! Not sure how much longer I can go on. Could I have RSDS? What can I do about edu Doc @ pain clinic fo better pain control? HELP!! Darla

Tamar - 03/01/00 23:28:23
My URL:http://www.angelfire.com/wv/michaeltamar
My Email:Tamar20star@hotmail.com

Comments:
Hi I love your site. I am a recent diagnosed RSD sufferer. Your website will be very helpful to a lot of people, not only those that suffer from RSD but those who are left in the dark about this terrible disease. I have provided a link back to your page. lease visit my RSD page. http://www.angelfire.com/wv/michaeltamar/rsd.html

Christie - 03/01/00 18:35:57
My Email:dmoffgyrl@aol.com

Comments:
I was looking up rsd for a better insight on the disease my mom has i found your wedsite and printed out some stuff to show my mom so she knows she isn't the only one around with it.

- 02/29/00 06:09:47

Comments:

eleanor hawkins - 02/26/00 20:20:48
My URL:http://www.rsdwebsite2000@my-deja.com
My Email:froggyrs@bellsouth.net

Comments:
I FOUND YOUR SITE BY SURFING,YOU INDEED HAVE A LOVELY SITE TO COME AN TAKE A REFRESHING MOMENT IN TIME TO SAY YES, I HAVE RSD AND WE MUST FIGHT AND WIN,BECAUSE THEIR ARE CHILDREN BEHIND US,THAT NEEDS NOT TO GO ON THIS ROAD OF RSD"A MONSTER" OF A DISEASE. I HAVE HAD RSD SINCE 1988,I WENT TO MUSC,IN CHARLESTON,SOUTH CAROLINA,WHEN THE DOCTORS TOLD ME I HAD RSD OF THE HAND/SHOULDER,LEFT SIDE INCLUDING I WOULD HAVE TO HAVE A LEFT ABOVE THE KNEE AMPUTATION. AS TIME AS GROW, THREW THE YEARS I NOW HAVE FULL BODY RSD,BUT I GET THROUGH EACH DAY WITH PRAYERS TO MY "GOD" PS.83:18 AND WONDERFUL PEOPLE I MEET. A SMILE TO EACH OTHER IS A GREAT WAY TO START THE DAY! WE ARE HAVING A CONFERENCE IN SOUTH CAROLINA,MARCH 3, 2000 THE DOCTORS THAT ARE HOLDING THE SEMINAR ARE: SUSAN DUBARRY REYNOLDS,M.D. FACP THOMAS DUC,JR. M.D. PAIN MANAGEMENT FROM MUSC 171 ASHLEY AVE. CHARLESTON,S,C, WILLIAM ODOM,II,M.D. HARTSVILLE ANTHE IOLOGY; A.L. McCASKILL,DVM AND THE HONORABLE DENNY W. NEILSON HOPE YOU WILL CONTINUED WITH THIS OUTSTANDING SITE FOR US WITH NEEDS TO COME TO. HAVE A WONDERFUL DAY,JUST TO KNOW SOMEONE CARES. CYBERSIGNED, ELEANOR froggyrs@bellsouth.net

treena - 02/23/00 20:45:30
My Email:meredith@hemscott.net

Comments:
hi sue great site. ive been diagnosed with rsd in my left wrist and hand. im in stage 1 and having physio 3 times per week. ive found the forums great and i log on everyday. keep updating the site its great. treena

Allie - 02/15/00 19:08:28
My Email:allier@webtv.net

Comments:
Sue you have a fantastic home page. I also have this HORRIBLE thing called RSDS. Love your home page

Darren - 02/15/00 02:01:49
My Email:sonoma38@earthlink.net

Comments:
Hello, Sue. I must say I am impressed with your Homepage. It easily is the equal of some of the most professional company pages I have seen. Hope you are having a good day. See you later! Good-bye for now, Darren.

marcia gainey - 02/10/00 18:48:17
My Email:gainey@rocsoft.net

Comments:
I am a 36 yr.old female injured in an automobile accident Sept.of '96. The seatbelt snatched me backwards. I remember going sideways in the car and winding up still in the drivers side and also hanging over into the passengers side. i was lucky. Since then I have had severe headaches and pain in my left shoulder, arm and wrist to my fingers. (I could trace it!)It was a straight shot of pain and numbness. Now it burns and feels like it is spreading wider and wider. I have cried to my doctor asking hi to just "cut off my arm starting at with my shoulderblade. My entire shoulder and arm burns constantly. My doctor could not figure it out.(Physical Therapy made it worse.) An MRI explained why I have bad headaches (shifting around of a few vertibrae a d lots of bone spurs)and a Nerve conduction, told us there was nerve damage to my left arm. My doctor says he has suspected RSD but i don't show all of the symptoms. The skin is of normal appearance(other than swelling) sometimes reddish, sometimes paler He sent me for a thermagram it showed abnormalities in my hand and wrist. I saw yellow and green in the areas of my arm and shoulder as well in the wrist and hand. The thermagram was read as showing abnormalities to my wrist and hand being worse than y arm and shoulder, I don't get it. My entire arm hurts like hell. My doctor and another doctor decided my skin didn't have the "RSD" appearance and ordered another nerve conduction. It was like it intensified the burning pain in my arm tremendously. My doctor said that was good, that meant some of the feeling was coming back. I could have told him that! My arm has tooo much feeling!!! I feel like the nerve conduction has aggravated the hell out of my shoulder to my hand. It was like it triggered so ething worse. My arm and hand feel like your leg is asleep and you move your toes. My daughters came up with the skin feeling, like a blister you popped and the tender skin underneath, or a bad sunburn. Since the thermagram and mri's i have had a gangoloin (?) nerve block, i really did'nt notice any difference. I've had one neck epidoral (?) (spelling(?) i take neurontin 300mg 4 times dailey, prozac twice dailey, loracet, i have xanax i take only when eeded rather than prescribed. i have been on anit-inflamatories for so long, i cannot tollerate them anylonger. (acid reflux...BAD!!!) I need help with some answers, please!!!

Donna Watson - 02/10/00 18:20:04
My Email:DJW4991@cs.com

Comments:
I loved your web page. It's very beautiful. I have had RSD for 3 years. It can be truly debilitating but I like alot of RSD sufferers have reached the point that I know what I can and can't do. I do the best I can to keep my spirits up and you know it's n t always easy. I want to enjoy everything that I can in my life. I don't want to focus on the negatve but RSD often forces you to. So when it's possible I enjoy lifes simpilest pleasures. Each day these brief periods of tranquility come in very small dose and you just have to take advantage of them when you can.I would like to hear more from you. Keep fighting the fire.

jackie - 02/06/00 17:02:55
My Email:jane122562@aol.com

Comments:
just started to look at your web page i just found out i have rsd my pain is getting worse i am depressed and just trying to find out all the info i can life sucks right now

Rick Steuart - 02/06/00 00:51:51
My URL:http://www.ipass.net/~rsteuart
My Email:rick_steuart@yahoo.com

Comments:
I very much enjoyed your site, and am proud to be listed as a friend. You have obviously put a lot of time into your site, and I wanted to say that it is very nice. Peace and love, Rick.

donna kennedy - 02/01/00 06:21:08
My Email:Lv4vr51808@aol.com

Comments:
HI The site is great! I have missed you....write me sometime when you can. love ya

Mary Aiken - 01/31/00 16:34:41
My Email:ppuffsmom@yahoo.com

Comments:
I have rsd also.I have had it for 2 years.From work,they dont seem to be doing anythingfor me i did the steriods,neurontin,ultram but nothing seems to be helping.I stay in the tub so much i look like a prune.But that is all i can do to ease the pain a lit le.Do u have any suggestions? This is a great page. Without all the people help that have rsd to share theirs with all of usthere would be no help or supportor information about this monster. My docter has not told me anything about rsd and what is happi g to me.But as i go back on all my reports all the signs off rsd where there from the begin.So they could have tried to fix it.

Valerie Spatz - 01/28/00 14:14:11
My Email:vallee16@home.com

Comments:
I love your page...thanks for taking the time to put it on the web.

Yvonne Holland - 01/28/00 03:56:11
My Email:NONNIE83@CS.COM

Comments:
I have rsds and would like to talk to some that about it. We don't have a group in Greensboro so it would nice to talk to some

Yvonne Holland - 01/28/00 03:54:18

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SONNY IRELAND - 01/15/00 06:41:45
My Email:sma@us.hsanet.net

Comments:
hi sue and fellow RSD SUFFERERS, WELL YOU ALL SUMMED UP MY PROBLEMS, SO I'M NOT GOING TO BORE YOU ALL. THE ONLY THING I WOULD LIKE IS TO TALK OR CHAT WITH SOME OF MY OLD FRIENDS FROM MENSONA PAIN CLINIC, I REALLY MISS THEM. I HAVE SORT OF TURNED INTO A SHUT IN RECENTLY EXCEPT WHEN I'M IN HOSPITALS SEEMS LIKE THAT'S BEEN MY SECOND HOME. THANKS FOR LISTENING!

Pat Russo - 01/12/00 21:41:54
My Email:pr216@aol.com

Comments:
I too have RSD, I have stage 3 on my right shoulder and hand. It has started to mirror to my left. I'v had stellite block, but yo no avail. The swelling has gone down, but my pain has not. My hands look like claws, due to stiffness. My present doctor doesn't believe in any medications. He says that you can control this RSD on your own. It seems to me that there would be a protocol you would follow, painmeds, etc. to break the cycle of pain. Do you ever get over this? I don/t look like I am sick, bu I am. How do you explain to people that you indeed have this horrible disease????? I have been going to therapy and even my therapist is not too happy with what is now going on with my left hand. My doctor looked at my right hand and said "oh good you 100% better" He never looked at my left. This is what I mean, just because the swelling has pretty much gone down, people, even my doctor assume i am ok. This is so untrue. I am getting so frustated about this. I did see a neurologist, who performed an EMG on me and says I defenitly have nerve damage. He wants me on a protocol of Neurontin, Pain management, anti depressents for the time being. Also a pain management team, along with therapy. I think he has more on the ball than my ortho. Help! I r ally could use some thoughts about this. thanks. Your site is beautiful! !!!

Lisa Doty - 01/11/00 23:37:18
My Email:doty@pioneeris.net

Comments:
I really enjoyed your web page.I sprained my foot/ankle on October 29,1999.The doctor mentioned RSD but he is still running tests and since it happened at work I have to deal with workers compensation giving me a hard time saying I don't need all of these tests.I have alot of the symptoms of RSD and all of the pain. I'm tired of not being able to do anything.I'm looking for any information and support I can get.

Pat Russo - 01/09/00 00:57:43
My URL:http://pr216@aol.com
My Email:pr216@aol.com

Comments:
Dear Sue: I also have RSD. I was just diagnosed in September. I have stage 3 on my right side and stage 1 on my left. The pain is unbearable at times. My right hand is no longer so swollen, due to stellite blocks, so everyone thinks I am fine. My hands turn blu , especially my right. I guess as long as you look fine, people don't understand that you really are not. Thanks for listening.

Debbie Ritchie - 01/07/00 22:01:25
My Email:addesa@simplynet.net

Comments:
Yes, the pain is very real, regardless of what those around you may think. I have been dealing with this for the past year and a half, and am just now beginning to receive the support from my family that I felt would be there from the start. I have just otten this computer, and would love to hear from anyone in Oklahoma who is dealing with this monster. I have searched numerous web sites, and am finding nothing from the old Okie state.

Beth - 01/04/00 21:27:30
My Email:bwhiz@ev1.net

Comments:
I have RSD in my legs. I have had a morphine pump implanted. Beth I need a friend like you.

Norma - 12/23/99 14:49:57
My Email:Mooreracin@aol.com

Comments:

SHARYN FEENEY - 12/03/99 16:41:00
My Email:ETFEENEY@AOL.COM

Comments:
THANK YOU SO VERY MUCH SUE, I FEEL I HAVE FOUND A FRIEND THAT WE READY SHARE MUCH IN COMMON. PEOPLE WHO DO NOT LIVE WITH RSDS CANNOT CONCIEVE OF THE PAIN AND ALTERED MENTAL ATTITUDE. I HAVE HAD THIS FOR 18 YEARS. A RESULT OF AN UNKNOWN INTRUDER WHO STA BED ME IN MY HOME. I HAD THE SYMPATHECTOMY AND HATED THE RESULTS. I AM SO HAPPY TO HAVE FOUND SOMEONE TO TALK TO ABOUT THIS THING. PLEASE REPLY IF YOU FEEL UP TO IT. SINCERELY, SHARYN

Dave Moore - 12/02/99 06:44:48
My URL:http://hometown.aol.com/dmoorersd
My Email:dmoorersd@aol.com

Comments:
I have had rsd since 1992. It's started in my right knee and over a couple of years has spread over my entire body. I have gone through so many different procedures in an effort to combat this disease. Now I'm taking medications in an effort to manage my sd. I have tolerable and intolerable days. Hopefully one of these days there will be a breakthrough.

Donna Christener - 11/29/99 17:36:29
My Email:novack5@ptd.net

Comments:
hi sue well the doctor is finally doing the block now what to do about seeking help from both doctors and lawyers at least he dosent think im crazy thanks for your help looks like im going to need it

- 11/21/99 05:45:32

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- 11/21/99 05:44:24

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Gale&Vicki Washburn - 11/21/99 03:06:27
My Email:vwashburn@infoblvd.com

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Gale has had RSDS for almost 5 years now.

Gale&Vicki Washburn - 11/21/99 03:05:33

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ktbouton - 11/20/99 04:09:50
My Email:ktbouton@catskill.net

Comments:
i too have rsd(chronic pain) and it seems to be geeting worse. i am having problems with workers compensation and the ins. carrier, they say i voluntarily removed myself from the work force, and that they can't see(ha)anything wrong. i have been going thr this since 1994. i need a friend

Yvonne - 11/19/99 18:21:11
My URL:http://geocities.datacellar.net/EnchantedForest/Cottage/3235
My Email:BigAppleMamma@webtv.net

Comments:
Hello Sue!! 15 years ago i was in an auto and was hit head on,and was told i had C.F.S,but i have lived in pain every day, cant sleep,as the pain wakes me up,my head-back,arms,legs,there are days when my knees give out.and cant walk-or bend my knees and I have been told it is all in my head,My loving Husband has been so god with this,with his help in the morrings I roll over on the bed-to the end he then turns my legs and picks me up.for about 8 m nths I had to sleep siting up.I also have C.O.P.D.and to top it all off on Dec 6,99 I go into the hosp to have both my barest removed I dont know howthis will work on my chronic fatigue & immune dysfunciton syndrome.any my love to you and all the others.God Bless Yvonne

Greg Stephens - 11/16/99 20:33:22
My Email:uncleben@gateway.net

Comments:
I spend alot of time at this keypad.I have had this rsd thing going on 6 yrs. now.Not that it matters but In the last 26 months i have had 31 blocks .All were done at UAB Which is agreat school to hear Dr.J dy Mc d iel.I didn`t give her name you knows th reasons.Anyway please tell everyone DONOT get NERVE BLOCKS for RSD.If they do may GOD help them.Like clock work I got a block every 2 weeks for over 2 yrs.I would walk in very slow with my wife and my cane 1 hr. latter I would walk out like a regular per on,cane over my shoulder.I had no pain for about 20 hrs. then it was back to the cane for 2wks.all the med.stayed in my body and will stay until they do the autopsy which the way I feel want be to soon for me.Sorry about going on and on like I have.I wish I knew a Dr.that would give me something to kill the pain.Like all the rest of us on a scale of 1-10my life is maybe a 3 with painup to a 7 on goodys days and9.9 on abad day.One thing more why do doctors worry about us getting hooked on pain killers its not like we will ever be normal again?I say let the person in pain tell them how and what will knock the pain down,its us hurting not the pin head doctors.you can telltoday is one of my bad days .May GOD help us ,know one else cares

Jamie Scott - 11/16/99 01:22:49
My Email:jamiescott18@hotmail.com

Comments:
Incredible piece of work.Helped a lot. Thank you! Hang in there. Jamie Scott

Kim Ellis - 11/15/99 23:30:29
My Email:dustamp@aol.com

Comments:
Hi--I also have RSD and it has taken over my life. I haven't been able to connect with others in my community that I can talk to about this. NO one seems to understand. Thank you for having a place to go to.

Pat Russo - 11/13/99 09:08:39
My URL:http://www.pr216@aol.com
My Email:Pr216@aol.com

Comments:
This is a great page. I was just diagnosed with RSD stage III, and your encourgement really hleped me. Thank you.

DAVID BARKER - 11/12/99 16:24:01
My Email:DAVID_BARKER@STAND-PROD.COM

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Ned Harmon - 11/07/99 05:37:24
My Email:hooty@dmrtc.net

Comments:
I have had this condition for 3 years but the Dr. just told me that I have nerve damage in my foot. I just took it on the chin along with a few Lorcets until a week ago when I just lost it and broke my hand beating on a door. I went to the Dr. and he told me to look on the web and I would find out what I had and I almost @#$. I had no idea of the gravit of my situation. Thanks

Tracey Mullen - 11/06/99 23:55:30
My Email:tnhkrieg@aol.com

Comments:
Just visited your site. The music was so relaxing and beautiful. I was diagnosed with RSD after knee surgery in 1998. It started in the knee and down leg to the foot. It has now spread up my leg into my hip and buttock. Have had several blocks, pumps meds, etc. Awaiting a SCS now. Not sure about this? Pain meds don't help so I struggle without them. I've been out of work since July. Having a hard time accepting all these changes in my life. If you need a friend, I'm here. None of us should go hrough this alone. God Bless, Tracey

Eulanda Bradford - 11/03/99 15:51:24
My Email:EulandaKBradford@compuserve.com

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I was diagnoised in May '92 with RSD, I had the blocks and eventually had to have the Thoracic Sympathectomy (mispelled). As a result of this surgery I developed Asthma and a long line of breathing problems. But the pain did go away, about 7 months ago I tarted noticing the signs that my RSD was flaring up. I have had episodes as to where I was walking one minute and the next minute I am on the ground because my legs have gone out on me. I could not understand why my memory is coming and going because I a only 32 years old.In other words I am too young to be having memory loss. I would like for you to e-mail me because I am tackling this thing in the physical ream by myself. In the spiritual ream I know that my GOD is able

michelle kellen - 11/02/99 01:25:51
My Email:apples6442@.com

Comments:
i got this monster buy a falling at work. this as had alot of toll on me and my husband. ive only had it since april 99 now nov 99 nothing has helped so far im thinking about the pump done what do pepole think about it thats have had it done? please let m now soon. im very nervous about this. im only 25yr

michelle kellen - 11/02/99 01:03:45
My Email:apples6442@.com

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Razzle - 10/31/99 13:36:03
My Email:razzle00@hotmail.com

Comments:
Just glad I found this site. Have had RSD for 2 1/2 yrs. and no pain meds work on me! My hubby & sites like this help make the pain more tolerable knowing others care and are out there making a big difference for us with chronic pain & RSD. Thanks for his great site!

Laurie - 10/27/99 14:34:09
My Email:DEVLKICKER@aol.com

Comments:
My dear friends, I just wanted you to know that we are praying for all of you. God loves you, he cares about where your at. Turn to God with your pain, the Bible says to cast ALL your cares on him for he cares for you. satan has put this horrible monster on you and we need to fight back. Don't let him win. God is greater than anything. My husband has rsd, he has fast progressing rsd, it only took him a year to get to stage 3. But God is good all the time, and we're trusting him, and want his will in our lives. I, and my church are praying for all of you, lets kick satan in the head and show him his place. love in the Lord laurie

Joyce Bachman - 10/27/99 05:10:54
My Email:joycebpa@yahoo.com

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I also have RSD.And I live in Pennsylvania.I really like your home page

Jim Shea - 10/25/99 10:50:26
My Email:jrshea@eartlink.net

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Sue, read your website and think it must be of gret solace to many. Thank you for your time and your caing for others Don't give up the good work.

Jim Shea - 10/25/99 10:31:26
My Email:jrshea@eartlink.net

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Cathy Lambeth - 10/20/99 03:21:52
My Email:cathyl@net1inc.net

Comments:
Your page is beautiful, sometimes I'd like to know how you did that with the water reflection. I am a beginner, both with the computer and RSD. I have had RSD for probably 20 years, but I was only diagnost a year ago. My life is like many others going own fast. I can now only walk with the use of a crutch and my Dr. had odered a wheel chair and says I will have to stay in it to get better. My entire left leg is affected. Its an ugly purple thing! When the Doctor asked me why I had not stopped workin I told her beside financial reason, I was hanging on praying for a cure! I believe that my God will heal me or use me according to his will. This is my prayer. God Bless you all, hang in there--- God still performs miracles!!! ps-- for the birthday ist mine in October 29! I am getting older! If I can help anyone. please e-mail me at -- cathyl@net1inc.net

LINDA ROBINSON - 10/19/99 03:32:02
My Email:litelfeet@aol.com

Comments:
Hello Sue, I also have rsd since 1983, I came across your home page today and wanted to write you and let you know I'm in the same boat. I'd love to talk with more people with this terrible diease and be a friend to people with this as well. Thank you for caring for others in your same shoes. Tender hugs, Linda Robinson

connie - 10/16/99 13:11:48
My Email:struggles2@AlaWeb.com

Comments:
I too suffer with rsd(crps). I was in an on the job injury,ending up with rsd .Now 4 1/2 years later 27 trips to the or , finally got 8 weeks of therapy authorized by work comp. there is nothing the medical field left for me . I would love a friend who kn ws ,Iam not a whinner,just struggling. Please spread the word october is rsd awareness month the public needs to know of what i've been through can prevent one person from a life of cronic pain, it would have been worth it all.I am in the process of tryin to add an itractable pain clause to alabamas w.c. laws. i need to know where to find out what other states have this. hmo should accept responsibility for not allowing early intervention,and let the mds and neurologists be just that and lets find the mis ing link. please contact me i am home bound we finnally got the puter to educate and entertain me .God bless you and yours iI know when all hope is gone thats when faith really kicks in. connie

Bernadette Cutting - 10/14/99 19:47:56
My Email:bernadettecutting@hotmail.com

Comments:
Thank you friend for a beautiful site...truely a god send...my symptoms started oct.98-diagnosed april.99...i'm having difficulty accepting RSD...i'm not finding a lot of proffesional support..in the sense that the dr.'s don't know how to help...stop the ain..Love and light to you.

Alan Branch - 10/12/99 17:05:32
My Email:Webman58@aol.com

Comments:
Sue, Nice web site. I'm sorry that you are suffering with RSD. One doctor thought I should be screened for RSD after 6 knee surgeries. However, at least most of you have known part of your life without pain. I've had acute knee pain since my earliest child ood memories. If and when you or any of the other sufferers email me, I can comiserate with them. I think the worst part is the depression that our spouses feel because we aren't "Normal People".

JoAnn - 10/11/99 02:51:38
My Email:jodan@fast.net

Comments:
Dear Sue, just checking out your updates, the site is absolutely beautiful. So peaceful, a great place to visit. Hope you will feel better real soon, looking forward to your visit. Love ya, JoAnn

Carol Caissie - 10/11/99 02:42:45
My Email:eissiac@wkpowerlink.com

Comments:
hi Sue i'm the wife of a 45 year old man that has rsd. trying to cope with the horrors it can be. hope you are doing ok.

Debra Dunn - 10/09/99 22:15:55
My Email:bnbsalon@spis.net

Comments:
PLEASE REMOVE MY NAME OFF THE RSD LIST. I HAVE BEEN DIAGNOSED WITH MS. I WOULD LIKE TO STAY IN TOUCH WITH YOU. BUT I AM RECEIVING TO MUCH MAIL THAT IS NOT EVEN FOR ME ,THEY JUST FORWARD THE SAME STUFF OVER AND OVER, PLEASE TELL ME WHEN YOUR ABLE HOW TO ST P THIS, LOL, DEBBIE

Cathe Ziereis - 10/06/99 04:32:23
My Email:cathez@excite.com

Comments:
I like your page, simple and to the point! I too have RSD and hate every day of my life. I am female and 44, I used to be a go getter, now I just watch.

Annie Voss - 10/05/99 00:20:00
My Email:success1@ameritech.net

Comments:
Am signing for my lady Annie. She has this terribe RSD and I know she needs to talk to someone like you. Hope you two can connect. Steve Peckham

Diane St. John - 10/03/99 23:14:59
My Email:coulter@wincom.net

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I am from Leamington Ontario, Canada and I have had RSD for a year. My doctors are unable to control my swelling. I have had injections and they haven't worked. It is in my arms and is now spreading to my legs. If you have any other information on RSD ple se, please send me any info. I would be so grateful Diane St. John

Diane St. John - 10/03/99 23:14:14

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Denise Caton - 10/01/99 14:30:44
My Email:dcaton@xtalwind.net

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Hi,Sue Yes your right Ido have RSD And I to need A friend. It is hard to talk with someone that has no ideal what this does to you.I do like your sight it is warm and friendley.

Denise Caton - 10/01/99 14:30:42
My Email:dcaton@xtalwind.net

Comments:
Hi,Sue Yes your right Ido have RSD And I to need A friend. It is hard to talk with someone that has no ideal what this does to you.I do like your sight it is warm and friendley.

Angela - 09/14/99 14:02:25
My Email:ang_9_98@yahoo.com

Comments:
Hi, I hope you all get this. I'm very new at this. My hubby Has RSD. He has had it for 6 years. he got hurt at work on 4-16-93. The only reason i know that silly date is because the Dr.'s always wanted to know when you got hurt. He started out have RSD in one limb (his right hand) now he has all over the call it centerlized RSD. He is in a wheelchair. He can walk a little but not for a long period of time. I wanted to know if anyone knows about a imfusion pump? Because they Dr.'s want to give him 1 this week. I not sure what meds. will be used yet. Does the imfusion pump help with the pain? Well it make him more at ease pain wise? He also has big problems with depression. He tried to kill himself over the spring (in May of this year). What he did is he took all the meds. he had in the house which was alot since he got his meds. fulled 2 days before he tried to kill himself. He w n't go see someone to talk to either. Will I hope you all get this letter. And maybe you can help me understand a imfusion pump.

Shoshana - 09/14/99 03:33:47
My Email:kibbleshane@earthlink.net

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Hi ya all! I have RSD also and it is in my entire right leg. However I feel like it affects my whole body. I would love for others with RSD to share with me what kind of symptoms they have and how they feel in general. For example, I am so tired all he time that it seems like I spend most of my time sleeping or needing to. Do others with RSD feel this way too? Also I sweat so much, not my leg but my face and trunk. Do you? and ETC. I am getting ready to trial the SCS and I would love to know if i worked or did not work for you. I am still deciding whether to do it or not. Please write with any and all feedback on the SCS and what you feel like. Thank you so much.In Peace Shoshana

Jim Becker - 09/11/99 04:59:06
My Email:jim___judybecker@hotmail.com

Comments:
Hi Sue, I don't have RSD but have know a few that do, actually I was dx'ed with MS a whokle lot of years ago. I do like your home page and have book marked it. I will be stoppijng by again later. Jim (jester)

KATHLEEN - 09/09/99 01:35:18
My Email:jkathawk@aol.com

Comments:
RSD in 3 extremities since May

Patrick - 09/07/99 18:27:37
My URL:http://geocities.datacellar.net/Heartland/Oaks/2145
My Email:site4Christ@webtv.net

Comments:
Hello, Sue, you sent me through e-mail a link to your site. I'm praying for you for God's mercy and will to be done in your life. Don't feel ashamed, for He doesn't heal all of us. Please see my site, titled, "The Way To Heaven, according to the bible. ~ The grace of our Lord Jesus Christ be with you. Amen. Sincerely, Patrick.

Nanette - 09/07/99 16:27:22
My Email:nanette@calinet.com

Comments:
Dear Sue, One can never have too many friends. I have had RSD 15 1/2 years now and my blood pressure is completely out of control and I now have it systemically. I go to the VA to see if they will put in a morphine pump but I doubt they will so I am stuc taking this horrible morphine. A lot of people would say oh you get to take morphine great, I can tell you from experience it is not great, it is the most horrible thing in the world, you see I have to inject it. Then at night I have to take injectable ilaudid. I would gladly give this junk to anyone just to be healthy. And thank you for sending your lovely page, it is so nice and I love making new friends, well it lookd like I am about to run out of room, I don't have a page but you can e mail me or f you have ICQ we can chat over that. Again, thank you for being my friend. Love and God Bless Nanette

Genie - 09/07/99 04:34:51
My Email:tequila2@compuserve.com

Comments:
Sue, thanks for inviting me to your web site, it looks wonderful. It is nice to have a place to go where you know the person really understands and you so clearly do. I hope we can get to know each other better and maybe help each other some as you said o your home page. Many gentle hug's ! I will also be sure to tell others of your site.

Ann Smyth - 09/07/99 03:31:05
My Email:BagelQn@hotmail.com

Comments:
Hi ... I have just been diagnosed with RSD and am looking for more information from the Internet. My Doctor is not telling me much and most of what I know I've had to learn on my own after the onset of this problem following carpal tunnel surgery. How l ng have you had this and did you have the "block" my Doctor is recommending to me? Anything you can tell me will be greatly appreciated. Thanks, Ann

Bob Martin - 09/06/99 23:01:48
My URL:http://surflinx
My Email:rwmdjm@Hotmail.com

Comments:
I have RSD&TOS i had surgery April this year for the TOS but it didn't help. I have to go back thru the blocks again. if the blocks don't help then i'll have to get a pump put inside me or surgery agian on my spine.

Judy - 09/06/99 22:08:51
My Email:jrduck@prairieweb.com

Comments:
I do love you sue. You are one great person who has endured the worst and still make sure others are okay.

WiseHearts! Universal Hope For A WiseHearted Planet! - 09/06/99 17:11:27
My URL:http://www.mnsi.net/~tmcphers/index.htm
My Email:tmcphers@mnsi.net

Comments:
Your story is a powerful one. I never knew RSD existed until now. You are an angel for your part in informing the world and helping to wipe out the ignorance surrounding RSD. From: Terri McPherson

Joe Hartman - 09/05/99 03:02:01
My Email:joe01@bellsouth.net

Comments:
I have a pretty mild case of RDS; sometimes I hardly know it's there while other times I can feel it up my left leg ans into my "good" leg. I have a friend named Anne who has a terrible case of RDS; they're treating her with high levels of morphine. Hope ou're doing OK.

Martie aka Queenb - 09/04/99 17:58:32
My Email:queen_b58@yahoo.com

Comments:
Thank you for putting this site on the internet. I've had RSD for 3yrs now and hate it. I have a husband and 4 kids. They have been great to me but I feel very quilty for not being a mom and wife any more. In the last 5 months it has spead very rapidly an has now effected my heart. 2 weeks ago, I was rushed to hospital with chest pains. It turns out that I have angina/anziety...well thats what the doctor said. Well thats enough about me. I look forward to hering from you. And to you and all the others tha have signed your book with RSD or have a friend or family member...remember that one day there will be a cure for this painful disease if we all stick together. Many hugs to you all.

Judy - 09/03/99 19:56:27
My Email:jrduck@prairieweb.com

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Julie - 08/28/99 11:03:05
My Email:jsherida@key.net.au

Comments:
Hi.I like Your page. I have RSD too. I am just about to go to the pain clinic for more treatment. Julie NSW AUSTRALIA

Lyn Sandy - 08/27/99 00:10:06
My Email:hplus@whyalla.net.au

Comments:
Hi my name is Lyn I live in South Australia. I have had RSD in with left hand arm and shoulder for 6 years now. I don't have anyone at all to talk to about RSD except my family who are wonderful. I also have a great Doctor but no one with the problem wh really understands what you go through. I develeped this after surgery on my hand. I have enjoyed your website. Thankyou.

SANDRA - 08/23/99 19:38:43
My Email:Candee4@aol.com

Comments:
Hello, i have RSD..little over {2} yrs. i been passed around by many Drs. Now it try this/or that time.One dr told me I have stumped him. He doesn't know what to do for me.I like to know does anyone,have ideas how to calm some of the pain down.. Thanks

Mary Ann - 08/22/99 16:14:54
My Email:chigdielmann@msn.com

Comments:
Thanks for sharing! I've found a lot of new friends via the internet. I've just added you to my list. I've had rsd for less than a year, but I've been one of the lucky ones who was diagnosed early and treated early. My battle isn't over yet, but at least know what monster I'm fighting. So many others don't. Hugs, Mary Ann

HOMER - 08/21/99 23:12:42
My Email:rsd@access995.com

Comments:
your site is pretty cool. i have had rsd for 6 years now. my rsd is full body. keep your chin up & live a day at a time.

Sandra - 08/13/99 07:34:31
My Email:Candee4@aol.com

Comments:
I'am suffering with RSD too! Over {2} yrs.I live in Florida.. If anyone like to chat with me on RSD.Please e mail me.I had a Epdurial, pain block that went wrong.. May this moment, be less painfull..

Bill Martineau - 08/11/99 03:31:03
My URL:http://homtown.aol.com/gpaclm/page/index.htm
My Email:gpaclm@aol.com

Comments:
To my dear friend, I will always be here for you.

CHAD MANN - 08/11/99 02:59:23
My Email:SEAN_DEE_MANN@HOTMAIL.COM

Comments:
HELLO SUE, I'M WRITTING U BECAUSE MY DAD HAS R.S.D.HE HAS HAD THIS TERRIABLE DISEASE SINCE 1987.HE HAS HAD IT IN THE SPINE AND NOW IN HIS LEFT ARM.HE GOES THROUGH HELL EACH AND EVERY DAY WITH THIS.HE TOOK A SPELL WHERE HE HAD VERY BAD SORES (the doctors said th y were ulsers on the skin)ALL OVER HIS BODY.HE WOULD TAKE A SHOWER AND THE MEAT WOULD JUST FALL OFF LEAVING A RAW OPEN SORE. I AM A 19 YEAR OLD MALE.I AM CHAD, HIS OLDEST BOY.I ALSO HAVE A LITTLE BROTHER,ADAM,WE HAVE BOTH HAD A VERY HARD TIME COPING WITH THIS.FOR MYSELF IT WAS BECAUSE I WAS WORRIED THAT SOMETHING WAS GOING 2 HAPPEN 2 HIM.THEN THERE WAS TALK OF IT BEING HERA ITARY.THEY STILL THINK IT IS.BUT MY MAIN CONCERN IS 4 MY LITTLE BROTHRER WHO TURNED 10 THE 2ND.HE HAS NO CLUE WHAT IS OR GOING 2 HAPPEN 2 DAD.WHAT DO I TELL HIM?LISTEN MY HEART GOES OUT 2 U AND UR FAMILY.I KNOW WHAT THEY ARE GOING THROUGH.AS 4 U AND THE F W OTHER PEOPLE WHO HAVE THIS"MONSTER"I COULD NEVER IMAGINE WHAT U GO THROUGH.SO MY PRAYERS AND BEST WISHES GO OUT 2 ALL OF U AND GOOD LUCK. SINCERLLY CHAD MANN

Steve Pringle - 08/10/99 02:02:10
My Email:hoplong@glade.net

Comments:
I too have RSD. Have enjoyed your website.

Steve Pringle - 08/10/99 01:20:31
My Email:hoplong@glade.net

Comments:
I too have RSD. Have enjoyed your website.

lori vayo - 08/09/99 03:40:00
My Email:www.jvayo83215@aol.com

Comments:
thank you just for being here

Dede Eagles - 08/06/99 06:44:46
My Email:ddeagles@ix.netcom.com

Comments:
Lovely and soothing - Thanks for sharing

- 08/05/99 20:35:36

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leon lazarus - 08/05/99 17:52:39
My Email:llazarus@ibm.net

Comments:
very nice web site. my story is as follows: i work for the epa. on july 2, 1998, my doctor said i needed bilateral carpal tunel surgeries. surgery was approved on december 18. i stopped working on dec 22 because i couldn't move my fingers, and i had terrible burning pain. i had the surgeries i january and february 1999. i went back to work april 1. i stopped working in mid april. in may i was diagnosed with rsd, and the pain clinic (at robert wood johnson medical school) gave me a bunch of nerve blocks for my arms. it helped a bit. then t ey gave me nerve blocks for my legs- that helped a lot because it was caught early. the pain clinic stopped treatment until i had a full work-up (mris, ortopedic, neurological). i get the neurologial workup next week. then they send it to the pain clinic, who then prepares a proposed treatment plan for workers comp. workers comp has no accepted the rsd diagnosis yet. i am still classified as complications from carpal tunnel surgeries. leon i live in princeton junction, nj. i am married, 2 kids (sarah is going into the fourth grade, larry is doing his junior year of college abroad in england). this illness has been hard on my whole family. i am on the rsdlife listserv, and i check the harvard rsd newsgroup daily. be as pain free as you can.

Anita Midili - 08/05/99 06:29:02
My Email:emidili@aol.com

Comments:
I have rsd in both lower legs and feet. Still trying to work but it is getting rough. I live in Florida

ronny bergman - 08/02/99 13:42:17
My Email:WHD@wetv.net

Comments:
hi sue smile i dont have your type of disease but i do have rummetoid arthirits so i do know about pain and suffering i have so many new parts some people cal me bionic women smile i do like your site would be honored to e your pal if you like thanks have nice day ronny

Haidee - 08/02/99 07:21:12
My URL:http://start.earthlink.net/~hmop
My Email:hmop@earthlink.net

Comments:
I am a doctor. My past life anyway. I've been to TJ Hosp. years ago in Philly. UI live in Raleigh, NC & although UNC-CH Hosp. & Duke are near by, they are far for me to drive. I am tired of Doc's that are impacient with those of us who are slow to explain & need a helpful ear. i saw a new Internist 2 days ago who almost got hit by me..what an ass.. I've been down since I saw him 'cause I was hoping to find a helpful person. When I was preacticing medicine, I was a compassionate(liberal). I guess thats a la gh & a pat on my hurting back. I've been through all kinds of RX, my favorite Doc is Nortin Hadler @ unc. He is a Rhemotologist & very smart, etc. He told me years ago not to trek around alot looking for tests etc. I sort of listened, not entirerly 'cause after all, it's my life. I wil go to see him again the end of Aug. Maybe he can steer me in a more positive direction. Send me your stories, I like to see what others have been through & have done and the outcome.

David C. Frasure - 07/30/99 19:42:15
My Email:Sault_St_Marie@hotmail.com

Comments:
I am 17 I have just been diagnosed what will I go through now? Please Email me A.S.A.P Thank you.

michele - 07/30/99 11:41:14
My Email:wendel724@aol.com

Comments:
FOR THE LAST YEAR I HAVE HAD RSD WITH LOTS OF TREATMENTS (5 BLOCKS) 2 LUMBAR, 1 RSD, 2 BIER, WITH NO HELP. THEY DON'T KNOW WHAT TO DO AND NOW I DON'T KNOW WHAT TO DO. I WON'T GIVE UP MY BATTLE WITH THIS. I AM TRYING TO GET TO DR. HENDLER BUT I AM ON BWC IN OHIO AND HE IS IN MARYLAND. IF YOU KNOW AWAY TO GET TO MARYLAND BY BWC PLEASE HELP. NEED INFORMATION

Paige Bailey - 07/29/99 13:02:10
My Email:pkristal1 @aol.com

Comments:
I have RSD also. As a result of auto accident on 6/96 in left leg. Not dx till 4/97. Now under treatment with Pain Management Dr., and Psych. for coping with the monster. Hope to hear from you!! Paige

Cynthia - 07/29/99 09:25:55
My Email:cg370@aol.com

Comments:

Margie Pearl - 07/29/99 04:01:42
My Email:h2obabe54@aol.com

Comments:
I just developed RSD from stepping on a piece of glass 2 months ago. I hope my HMO will cooperate with the referral to a neurologist ASAP.

Joan Sacia-Stewart - 07/28/99 17:43:09
My Email:joans@aracnet.com

Comments:
Have rsd since 6/96. Not very good on computer so don't know what to put in URL (?). Rsd is combined with CLL & RLS - isn't life great? Now facing eye surgery (only have one) - anyone know how eye surgery affects rsd, so far Doc's don't seem to know. I KN W what it does to hands/feet/limbs/etc. Sigh. Look foreward to further contact. Joan

PAULA HAYNES - 07/27/99 06:08:26
My Email:nadine1@vei.net

Comments:
I TO HAVE THIS MONSTER I HAVE BEEN SENT FROM ONE DOCTOR TO ANOTHER I AM TO START GOING TO A PAIN CLINIC TOMMOROW . IAM NOT SURE WHAT TO EXPECT.

Sam Shannon - 07/26/99 21:28:51
My Email:sshannon@snowhill.com

Comments:
Thanks. What I would like to know is what have been various patient's experiences with physicians: the good and the bad. For example I say a physician in Florida who charged me $12,000 more than Blue Cross/Blue Shield of Florida and TRICARE combined would pay. No doctor posts their charges, so I did not know it would be so much until I got his bill nine months later. Additionally, I was put on Stadol, a medication I later learned I was allergic to. I had nausea and vomitting from the first day, I fell cons antly, and I finally was unable to talk. On the other hand, I have had good results with the pain clinic at Southeastern Alabama Medical Center in Dothan, Alabama. The physician has helped me with my RSD pain and the psychological problems associated with end stage RSD.

Judy - 07/26/99 12:55:49
My Email:jpaulpoole@aol.com

Comments:
I also live in Pa and have been fighting this in both arms and hands since 1997. Left arm now ok but right very bad. Dr's now suggest Sympathectomy which is very painful and can't find doctor in Phila.PA area that has done the procedure in T2-T-3 level. Need help and advise.

RuthB - 07/26/99 12:27:38
My URL:http://www.channel21.com/members/ruthb
My Email:RuthB606@aol.com

Comments:
I have been thinking about you!Well,here we go,Im going to try and give you a present,lol.

walt - 07/25/99 16:09:34
My Email:zutd53a@prodigy.com
Comments:
I liked your site. I have struggled with the RSD for almost 3 years now and still tried to run my business...I am going downhill physically, and it seems the stress of runing a small business and RSD do not go together well,as I can not even pull a full ay anymore let alnoe the 12+ hour days I used to pull as norm. I've tried it all except for sympathectomy, and pump...tried the SCS but to no avail. My last IV block had to be moved up from lower leg to thigh area now, and it really didn't help much...S now just on real heavy med management..nasty stuff I wish I could do without, but can't -I am sure you know the feeling. Sorry, didn't mean to go off...Just kinda depressed right now. Anyway just thought I would say hello...Hope you are having at least FIVER day or less... Take Care ! Walt

Laura Hand - 07/24/99 22:25:40
My Email:lhand@earthlink.net
Comments:
I'm delighted to have found this website. Love the black background! I've had RSD for four years in my arms and hands and am looking for a support group in South Orange County, California.

Darla Ewing - 07/23/99 23:45:47
My Email:dje0665
Comments:
Wonderful!!! but I am so sad to see that so many people have this alien living within them. My heart is just breaking. My suffering has only begun but after seeing this I will continue to wear this pain like a badge of honor.

xstitchp2 - 07/23/99 06:00:03
My Email:xstitchp2@aol.com
Comments:
This is a beautiful site.There should be more sites with stories. God blesss

Angella Petrick - 07/23/99 01:16:05

Comments:
Beautiful web site thanks Angella

Carl Duplantis - 07/23/99 00:38:38
My Email:msmargie@bellsouth.net
Comments:
Dear Friends, I found you today on the net. I read all of your stories about RSD. I had an accident on February 11, 1981, while working. My story is very interesting in how this all began. Eighteen years is a long time and a lot of PAIN. Thank you for the web site. Wri e if you need a friend or someone to share with. Carl

Diane - 07/22/99 16:46:04
My Email:angentdf@yahoo.com
Comments:
Hi again, sorry 'bout that. I didn't finish my e-mail address on 7/22/99. Today is a difficult day....PAIN persists! Swelling, sweating in my palm of my right hand, and it seems like my right arm weighs lbs! RSD is PAIN. Signed, Diane in Florida.

Dr nancy Just - 07/22/99 15:38:37
My Email:rsdstudy@hotmail.com
Comments:
IRB #: M-152-1997 Principle Investigator: Nancy Just, Ph.D. A Treatment for Muscle Dystonia in People with CRPS Specialists at the Pain Management Center of New Jersey Medical School are conducting a study to evaluate the safety and effectiveness of an investigational drug for the relief of muscle dystonia (muscle spasm) in individuals with Complex Regional Pain Sy drome (CRPS). CRPS is a painful condition that follows minimum to major nerve injury. Some people with this condition develop muscle dysfunction that increases their pain and often decreases their ability to use the part of the body affected by the disor er. In this study, CRPS patients with muscle dystonia with undergo a physical exam, complete forms regarding the degree to which the muscle spasm and pain interfere with their daily function, and will receive an intramuscular injection (under anesthesia i desired by the participant). Study participants will then engage in 8 sessions of range of motion physical therapy and a final medical evaluation. Study participants must be between the ages 18-70 of have documented CRPS. Those accepted into the study will receive a free medical exam, study medication, and physical therapy. For further information, call Nancy Just, Ph.D. at 973-972-2081, page at 973-899-8413 or rsdstudy@hotmail.com.

Ken W. Wolf - 07/22/99 03:39:13
My Email:wolfks@mail.ocis.net
Comments:
I have been plagued by R.S.D. since multiple shoulder surgeries. Three sympathectomies later, and a pain clinic, I have finally resigned myself to living and dealing with the pain. I am now in the driver's seat and not letting the pain be!!!

Becky Dutro - 07/22/99 00:02:48
My Email:bdutro@kc.rr.com
Comments:
Would someone please help me!!! I was diagnosed with RSD almost 8 years ago. I am young and it still affects my life some of the time, but I refuse to be a complainer to my family. Can someone tell me, does it kind of go away and have the risk of coming ack. PLEASE, help I just found out reading that my sleeping may be part of the disease, say it isn't so??!?! Maybe someone is willing to sit down and talk to me. THANKS!!! TAKE CARE:)

Diane - 07/21/99 12:41:48
My Email:angentdf
Comments:
Hi! Yes, RSD is very awful. In Dec.of '98, I had a slip and fall....and in June '99, I have been diagnosed with RSD! It will be eight months, and I haven't worked, My mother came and left, and my friends have all but given up on me. The suffering I've bee through has been HORRIBLE. Yes, I could use a friend. Diane in Florida. Please write back.

Marie Jacques - 07/19/99 20:21:05
My Email:mjaqes@aol.com
Comments:
Hi Sue, I just wanted to stop by again. I guess I was hope to find an update. I got your messege today. I cried for you. I hate to think that you won't be here. I hope you are just talking out of depression and not a doctors prognosis. I am worried for you, I really wish I could take your pain away. Your in my thought, wishes and prayers, (((gentle hugs))) Marie

Olivija Gwynne - 07/19/99 20:09:17
My URL:http://www.olivija.com
My Email:o2@olivija.com
Comments:
You may use any information on any of my pages on my site. Please refer it back to my home page though. Also your site is very nice graphically. Wish I knew Java. Will accept help if you can send it email (tee hee) I am looking forward to viewing your husbands sight when it is up and running. Webbing is wonderful therapy. Good luck to you both.Your friend in Pa. The Boo Mistress, Olivija

Mindy - 07/19/99 00:20:58
My URL:http://geocities.datacellar.net/heartland/forest/1339
My Email:Fire_Maid@yahoo.com
Comments:
Hello:-)I do not have RSD, but have met a wonderful person, over the internet that i am developing a wonderful friendship with, and she has RSD. I am reading all i find about the monster. I feel for you all deeply in my heart. I cannot tell you "i know how u feel" b-cuz i do not, but i do understand pain of n e kind. but i am willing to give n e and all my hand in friendship and to be there if u just want a friend to talk to. Please feel free to e-mail me. I am a very good listener. I extend my hear to you all in friendship. Love, Light and Healing to you. (-:~Fire~:-)

Terri - 07/17/99 13:55:20
My Email:N/A
Comments:
Sue - You are one of the most generous and caring people I have ever met. It shows in your site and in your caring. You sent me the most lovely cards when I had to have surgery. Thank you for letting me call you friend. It is an honor.

Cathy Mujadin - 07/16/99 19:12:04
My Email:JMujadin@AOL.com
Comments:
Sue, thankyou for creating your website. So many others seem to go in different directions once aboard. Six months ago I was diagnosed with RSD due to a Failed back surgery 5-1/2 years ago that left me with a drop foot and severe neuropathic pain on my ight side from the back region down throughout my foot. I'm about to undergo a spinal cord stimulator implant this coming monday and I'm really quite frightened even though I know I'll probably be better off as the pain can't get much worse, right? Oh, hat's another thing> May I applaud your sense of humor, YEA!

Nancy - 07/15/99 22:20:21
My Email:Laureli@aol.com
Comments:
Dear Sue: Sorry to hearabout the agony you must be going through. Sometimes I feel like I'm the only one, and no one understands. Is there any way that you can e-mail me a simple explanation of RSD, so that I can explain better to friends and family? I've ha RSD for 3 years now in both feet, and it seems to be moving up to my knees. At present the doctor is treating me with 15 Spinal Pain Blocks, and medicine. I'm also seeing a psychiatrist for depression. I have prayed for God to take me home and put an nd to this agony, but like the rest of those who have RSD I have to believe that there is a purpose for it. Thanks for the website.

Merry Wellman - 07/15/99 19:42:28
My Email:mwrsd@aol.com
Comments:
I have had RSD in my lower right leg and foot for 3 years now. I have tried several different medicines, had tarsul tunnel surgery on my foot to see if that was the problem. I have had 18 bier blocks and have 2 SCS surgeries. The pain is reduced about 40% when I am doing absolutely nothing. It lets itself be known if I try to get anything else done. I injured myself at work, so I am battling work comp. I truly enjoyed your website. I would like to talk to others with this painful disease

Tim Nygaard - 07/15/99 04:22:08
My Email:Timnygaard1@gte.net
Comments:

Paula Haynes - 07/15/99 03:56:42
My Email:nadine1@vei.com
Comments:
Iwas just diagnosed with RSD today I really don't know what to think yet!I was first told that I had tenantis and two bonespurs on my heel and ankle but after recent tests and worstening condition over the last year we now what it really .So any info woul be helpful. Thank you

Nancy - 07/15/99 01:48:46
My Email:Waxscent@aol.com
Comments:
My husband has RSD in his right leg. He has has it approx. 7weeks now and it just seems to be progressing. Nothing seems to be slowing this monster down, better yet stopping it!

Dell - 07/13/99 22:43:24
My Email:dspade@uswestmail.net
Comments:
HI Sue, Kathy just showed me your new web site. I really like it. Notice my new email account. Take care and remember Sue you are always in our prayers. Kathy said to tell you to smile. Love, Dell

Gloria - 07/13/99 22:22:02
My Email:gblack@wpia.net
Comments:
Great Job! Would like more info concerning carpal tunnel, w.comp.

Bill - 07/13/99 00:33:23
My URL:http://www.angelfire.com/mi/kotarski
My Email:bkotarsk@gfn.org
Comments:
Have had RSD since APRIL FOOLS DAY 1998 The Cleveland Clinc is doing a Great job. Dr Stanton-Hicks knows his stuff. The whole hand used to Burn, But now they have it under control to just the finger tips burning

jack wilde - 07/12/99 03:13:19
My Email:vareb58@aol.com
Comments:
i dont have rsd but the love of my life does her name is lil aka buggs2266@aol.com i do like the site thanks for the info. links the some here if you would like to chat im me or e-mail me vareb58@aol.com or lil buggs2266@aol.com

LAURA - 07/12/99 00:00:27
My Email:LASKAM@AOL.COM
Comments:
HI SUE, I HAVE BEEN RECENTLY DIAGNOSED WITH RSD. I AM THREE MONTHS IN TO THE MONSTER, SO HOPEFULLY I CAN STILL GET OUT OF IT. I LOVE YOUR PAGE, IT HAS HELPED ME OUT MORE THAN YOU WILL EVER KNOW. MY FAMILY HAS BEEN VERY SUPPORTIVE, BUT THEY WILL NEVER KNOW T E PAIN THAT I AM IN, ONLY SOMEONE WITH RSD CAN UNDERSTAND THE PAIN AND THE STRAIN. C-YA

LAURIE - 07/09/99 06:09:55
My Email:DEVLKICKER@AOL.COM
Comments:
TO SUE AND ALL WHO ENTER IN, IAM PRAYING FOR EACH AND EVERYONE OF YOU, MY CHURCH IS PRAYING ALSO, IAM TAKING COPIES OF YOUR STORIES TO MY CHURCH AND WE ARE GOING TO PRAY OVER THEM ON A DAILY BASIS AND WATCH GOD DO MIRACLES, IF YOU DON'T WANT ME TO COPY YO RS PLEASE E-MAIL ME AND LET ME KNOW, MY HUSBAND HAS R.S.D. AND IT HAS GONE FROM HIS LT. LEG TO ALMOST HIS WHOLE BODY IN JUST 18 MONTHS. I SERVE A BIG GOD AND THERE ISN'T ANYTHING TO BIG FOR HIM. I WILL BE BELIEVING FOR ALL OF YOU AND I WANT YOU TO BELIE E WITH ME AND MY CHURCH FOR A HEALING IN YOUR BODIES. TRUST IN GOD FOR HE TRULY IS THE ANSWER FOR ALL DISEASES. BY HIS STRIPES YOU ARE HEALED. JUST BELIEVE IT AND IT WILL HAPPEN. LETS KICK THE DEVIL IN THE HEAD AND TELL HIM THAT ENOUGH IS ENOUGH, HE CAN'T HAVE HIS WAY ANY LONGER. MY HUSBAND AND I HAVE BEEN THROUGH ALOT IN THE PAST 18 MONTHS, GODS WORD SAYS HE WI L TURN WHAT SATAN WANTED FOR BAD INTO SOMETHING GOOD FOR THE GLORY OF GOD. PEOPLE, I KNOW THAT THIS IS A HORRIBLE DISEASE BUT LETS BAN TOGETHER AND KNOCK THIS IN THE HEAD. I WILL BE PRAYING THAT YOU HAVE NOTHING BUT GOOD DAYS AHEAD. LOVE IN THE LORD LAURIE PLEASE E-MAIL ME AND I WILL ALWAYS TRY TO ANSWER RIGHT AWAY. GOD BLESS ALL OF YOU

Mickey Sherman - 07/08/99 15:01:18
My Email:Sherman@ipa.net
Comments:
My heart breaks for you, I have been fighting this monster for 6 years. To be called a lier and treated like a money grubbing person. Doctors I've seen don't care and have only made things worse for me. My fight with workers comp. is still on going and 'll probably die before it is ever settled. God is my strength and I'll send you lots of prayers.

DEVLKICKER - 07/08/99 04:15:45
My Email:DEVLKICKER@AOL.COM
Comments:
MY HUSBAND HAS R.S.D. FOR ALMOST 2 YRS. NOW, AND YES THE PROPER WORD TO DECRIBE IT IS MONSTER! HE GOT IT FROM AN ACCIDENT AT WORK AND WE'VE BEEN BATTLING IT VERY FAST AND FERIOUS. THE DOCTORS HAVE TRIED MANY THINGS BUT TO NO AVAIL. IT IS SPREADING THRO GH HIS BODY LIKE WILD FIRE, AND IT SEEMS THERE IS NO END IN SITE. IF IT WEREN'T FOR MY FAITH IN GOD THAT HE WILL GET US THROUGH THIS, WE WOULD HAVE NO HOPE AT ALL. PLEASE E-MAIL US BACK AND LET US HEAR FROM YOU, AND MAYBE WE CAN BECOME FRIENDS.

DEBBIE - 07/08/99 03:36:25
My Email:D1959PEN@AOL.COM
Comments:
I HAVE JUST FOUND OUT ABOUT YOUR WEBSITE. I ALSO HAVE RSD, JUST DX 3 MONTHS AGO! I HAVE IT IN MY RIGHT HAND & WRIST & AS A RESULT AM ABOUT TO LOSE MY JOB. THEY HAVE ONLY ALLOWED ME 6 MONTHS OFF! THIS MONSTER HAS TOTALLY CHANGED MY LIFE AND MY FAMILIES! NO ONLY DO I HAVE THE PAIN AND EVERYTHING THAT GOES ALONG WITH THIS BUT I ALSO HAVE THE STRESS & HEADACHES OF THE JOB BATTLE! DOES IT EVER END????

Terry B. - 07/08/99 00:13:45
My Email:Benoit@ici.net
Comments:
Hi Sue, Love the updates. Hope this little note finds you in good sprits. Your friend in RSD, Terry B.

RuthB - 07/07/99 21:16:44

Comments:
CLICK my logo and your there
Well Sue,what do you think?

m.j. - 07/07/99 03:13:04
My Email:brat962@aol.com
Comments:
hey,sorry to hear you have this pest of a disease, it is the worse thing i have ever experienced,but i will not let this thing beat me up any longer,i will persevere,and learn to except the things i cannot change,and continue to smile through the pain the best way i know how :)

Deb - 07/06/99 05:35:00
My Email:bdsbsnyde@exotrope.net
Comments:
Nice page & great links. I too have RSD, 11 years now..from a c-section for the birth of my son. Wish you painfree moments my friend in pain. Deb

Angella Petrick - 06/30/99 01:54:41
My Email:rnap@thequest.net
Comments:
I have had RSD since 1992, and I have not yet been able to talk with anyone besides myself HAHA, about RSD. There are no support groups in my area and as far as I know not in my state. Thanks for letting me vent. Angella Petrick

Micheline Hoelting - 06/29/99 02:23:04
My Email:Mchoelting@aol.com
Comments:
Dear Sue, You are definelty not alone. If you need someone to alke to please wirte me, Micheline

Lindarae Cardera - 06/28/99 19:30:34
My Email:sweetrae@webtv.net
Comments:
I came across your web site today and was blessed. I have been dx with RSD for the last 7 mos. I'm taking one day at a time. I'm so thankful that there are sites like yours out there.

Kathy - 06/27/99 04:38:27
My Email:kathyspade@yahoo.com
Comments:
I love this Sue. You have done a great job. Remember I'm just a click away when you need to talk. I love you.

jack wilde - 06/25/99 03:43:28
My Email:vareb58@aol.com
Comments:
i dont have rsd but i live with the love of mine and she has rsd so any thing i see with rsd on it i read to see if there is some kind of help for all with rsd good site

David Mazzotti - 06/25/99 03:07:20
My Email:davidm@nctimes.net
Comments:
Hi! Recieved your post to my e-mail address- good to here from you! I also have this tormenting syndrome. My case of R.S.D. started as a result of an vehicle accident. Originally, I was diagnosed with: concussion, neck and back sprain. Within aprx 48 hours after accident, alot of numbness was -present in my: feet, calves, lower halmstrings and hands. Shortly after that, a few hours later, I had a sensation within my spine that reminded me of electrical current that you here from high powered electrical lines. You could not here it but, that is what it reminded me of. Anyways, my entire body, including skull and facial areas, has been under attack from this thing they call R.S.D.- like you, I had never heard of this syndrome. I would enjoy very much to communicate with you. By the way, there is a free service from A.O.L. that allows you to communicate at a much faster and efficient rate. It is called A.O.L. INSTANT MESSENGER. If you go to Netscape, you will see a yellow icon of a person. Double click on it and, you will be abel to load it for FREE! As long as you and your friends are on the p.c., (personal computer), you can write back and forth. A fellow R.S.Der, shared this with me about 2 months ago and, it works very well. None the less, I would enjoy chating with you., I enjoy the colors and artwork on your page! Also, I have thought about starting a support group in my area- San Diego, California. Hope your pain level is down today and spirits are up. Your friend from San Diego David

Rusty - 06/24/99 23:23:22

Comments:
Hi Sue, Sorry to hear you are not doing well right now. Hope it won't be too long before you are up and at 'em! Love, Rusty

Lillian Wiley - 06/24/99 18:30:19
My Email:buggs2266@aol.com
Comments:
I'm 38 yrs old and I have been a Suffer for 5 yrs.I am intrested in helping you in anyway I can, I live in Penna .also, Hopefully we're close because there are quite a few RSD people in my area and I was discussing starting a support group myself. My inju y happened at work back in June of 94, I lifted a 3lb box and from than on its been a nightmare. Surgeries made me far worse.This all started in my left wrist and I am now Full Body. I have a 15 tr old daughter and a 10 yr old son, This has caused drastic changes for both of them, they have had to completely had to change their lives.I cant do the things other parents do with their kids , mine always feel like outcasts. Contact me anytime!!! Gentle Hugs LiL

Jodi - 06/24/99 18:09:14
My Email:Shmutz68@aol.com
Comments:
I too have RSD for the second time.. this time it is much harder to fight. I have RSD in my right lower extremity, I had a SCS implanted in March of this year. My husband has been anything but supportive and I have 2 small children. It is alway nice t find someone else that can sometimes relate to Chronic pain and RSD. I live in Mass and I wish they had more support groups. I have to go. My kids are calling. Take Care Jodi

JEANNE BRATTIN (MEMA) - 06/24/99 16:33:30
My URL:http://meltingpot.fortunecity.com/montopolis/742
My Email:MAHTAZ55@FLASH.NET
Comments:
HI SUE! WOW I LOVE THIS SITE YOU HAVE DONE AN AWASOME JOB ON THIS...HON WOULD LOVE TO BE THERE TO HELP YOU OR JUST BE THERE FOR YOU TO TALK TO.. ANYWAY YOU KNOW WHERE I AM JUST A CLICK AWAY.. STAY THE SWEETHEART YOU ARE AS IT IS YOU. COMPASSIONATE AND TRUE... LOVE YA GIRL....JEANNE

Charlotte Dooley - 06/22/99 20:14:13
My Email:CJDooley@aol.com
Comments:
I really enjoyed your site. I don't know yet if I have RSD but two doctors have mentioned it to me and I am now seeing a pain doctor that I'm going to ask about it. I do need a friend because I have so many questions. I'm depressed most of the time becaus of the pain and change in my life. On good days I try to learn more about what is happening to me. I'm not sure if I have this thing but I sure do have a lot of the symptoms. The swelling and pain are the big ones. Also a jerking and tick like movement of my hands and forearms. I don't hav any redness or shiny skin. The pain is like lighting burning my arms and hands. My hands feel hot all the time but they are not red. Can this still be RSD? I'm on oral morphine and baclofen but it doesn't help much. Is there some other treatment that mig t help more? Help me if you can. Charlotte

Debra Dunn - 06/21/99 22:45:22
My Email:bnbsalon@spis.net
Comments:
Just found out today, I don't know much about it. if you have any information, I would be grateful for any comments, I'm Cosmetologist, Chances are not for long, please e-mail me, lLet me know what to expect.Hope to here from you soon.By the way I live in Dawson Springs, Kentucky JUST CALL ME DEBBIE,

Beth - 06/17/99 16:23:03
My Email:Wheat509@aol.com
Comments:
Hi, I have been suffering with rsd for almost 4 years now. I'm 36 mother of two stepkids jenni 8 and josh 11. I would love to email or talk with anyone with rsd. Beth

Brie - 06/17/99 15:35:32
My Email:Beaglelvr1@aol.com
Comments:
Hello, I to need a friend. It's really been tough on me and my family.going on 5yrs oh boy what fun.I enjoyed your web page. And the music.take care,God Bless,Brie, If you ever want to talk just e-mail. bye

kelly lachner - 06/13/99 23:13:42
My Email:KLADON@aol.com
Comments:
I, too, have RSD. I have had it for almost three years now. I have a spinal cord stimulator, which was placed a year and a half ago. I am on several medications. I hate the way the medications make me feel. I am 37 year old female who works part time I have RSD in my right foot and leg. I would love to talk to anyone who has this disease, either online or by mail. I live in Florida. Thank you. Your site was very nice and you should be proud of it!

Janet - 06/11/99 23:31:53

Comments:
GREAT JOB WOMAN

VERONICA - 06/10/99 16:43:43
My Email:Crickett@cetlink.net
Comments:
please if and when can u talk to me i need some answere's to question's i know u are not a doctor. but u do under stand what im going through and i just want to give up at time's but thank the lord he gave me a gift to keep me going my son christopher wh also has juv. arthritis and mild c.p in his legs but im teaching him to fight fight fight dont give up thank u and i loved your page it made me cry but happy tear's because just knowing there are people who care and i do care. veronica

Veronica erwin - 06/10/99 04:58:37
My Email:Crickett@cetlink.net
Comments:
HI MY NAME IS VERONICA. AND MY GOD YES I NEED A FRIEND I'M 36 I HAVE A 7YR OLD LITTLE BOY WHO I LOVE WITH ALL OF MY HEART. I TO HAVE THE MONSTER DISEASE. AND YES I TRULY NEED A FRIEND SOME ONE WHO TRULY KNOW'S THE PAIN AND WHAT IT FEEL'S LIKE TO LIVE LIK THIS I JUST HAD A SPINAL CORD NERVE STIM. PUT IN BUT AS OF NOW IT IS NO GOOD FOR ME BECAUSE IT INTERFERS WITH MY HEART. THATS ANOTHER STORY (LOL) I'M A VERY TRUSTING PERSON I WOULD NEVER WANT TO HURT ANY ONE. I'M LOOKING FOR SOME ONE TO BE A FRIEND WHO K OW'S WHAT IT IS LIKE TO WAKE UP IN THE MORNING AND NOT BE ABLE TO WALK AND HAVE TO HOLD ON TO THE WALL FOR SUPPORT. I LIVE IN SOUTH CAROLINA BUT IM FROM LONG ISLAND. I GO TO A PAIN CLINIC HERE IN CHARLOTTE N.C I HAVE BEEN ON PAIN MED FOR (WELLMANY YRS NOW OL) I HAVE TRYED TO LOOK UP INFO ON RSDS I GOT SOME BUT IT JUST IS NOT THE SAME AS TALKING TO SOME ONE WHO HAS IT!!!! I CAN GO ON AND ON ALL I ASK IS THAT WE CAN BE FRIEND'S AND WE CAN HELP EACH OTHER. I'M ALSO VERY NEW TO THIS COMP STUFF SO BARE WITH ME I TYPE SLOW LOL I TRY REAL HARD EVERY DAY TO DEAL WITH THIS CRAP BUT SOME TIME'S I JUST WANT TO GIVE UP ALL TOGETHER. I AM USUALLY HOME FROM MORNING UNTIL 2:00P.M DAILY MY LIFE HAS CHANGED SO BAD I HAVE ALWAYS HAD ARTHRITIS. SINCE A LITTLE GIRL AND NOW I AVE REMATHOID ARTHRITIS AND THE RSDS . MY DR'S MAY BE STARTING A SUPPORT GROUP SOON I HOPE THEY DO. PLEASE CALL ON ME I REALLY COULD USE A FRIEND I AM VERY EASY TO TALK TO I GET ALONG GREAT WITH PEOPLE I LOVE LIFE I LOVE MY FAMILY I LOVE GOD.AND I WOULD J ST LOVE TO HAVE A FRIEND WHO CAN SAY HEY I KNOW WHAT YOU ARE GOING THROUGH AND HEY I KNOW WHAT THAT FEELS LIKE AND YOU CAN BELEIVE THEM WHEN THEY SAY THAT BECAUSE THEY TOO ARE SUFFERING LIKE YOU AND I WELL THANK U FOR YOUR TIME PLEASE CALL ON ME I NEED FRIEND AND I CAN BE ONE TOO THANK YOU VERONICA EMAIL IS Crickett@cetlink.net
Gail Hoffman - 06/08/99 15:38:12
My Email:GHoff81400@aol.com
Comments:
Email me sometime How long have you had RSD Where is it? Always looking for new info, because i'm still hoping I can get into remission. Gail

Charlene D. Ferguson - 06/06/99 16:22:37
My Email:need2bmine@aol.com
Comments:
Hi my name is Charlene and I have RSD for 2 years now. I am just now starting to walk and I have tried to go back to work. I am temping but at night when I come home I am in extreme pain it is terrible. I always ask myself when is this going to be over I always need a friend mine left me when I was in the hospital for a month and I feel all alone sometimes I want to kill myself but I am to chicken. I cry all the time and no one seems to understand my pain, my anger, and my emotions.

Kathy Machovec - 06/05/99 23:18:37
My Email:WildwindBelgians@worldnet.att.net
Comments:
Hi, My name is Kathy, I live in Maryland. I was recently diagnosed with RSD. I have known about this disease for about three years, but it has taken me this long to get a doctor to make the diagnosis. I have a wonderful oncologist(I was treated for breast CA five years ago), who has given me strong en ugh pain medication to help control the pain in my legs. I am currently on MS Contin 100 mg and MSIR 30 mg for pain. After seeing a third neurologist, I was finally told that I did have RSD. I already was quite sure that that is what I had. I am a registered nurse but have been unable to work for the past five years. I would love to have someone to talk to. It was so frustrating getting this disease diagnosed. I went to this neurologist because he does nerve blocks. I will get my first nerve block on June 17th. I can't wait. My best friend who lives in Illinois is in constant pain and I am quite sure she has RSD also, but hasn't been able to find a doctor to make the diagnosis also. Please write to me if you would like to. Kathy

Autumn Doxsee - 06/05/99 07:13:04
My Email:arichardson@ideafamilies.org
Comments:
Hi Sue , I just typed everyhthing in here and hit start over.Darn! Anyway.Nice page. I enjoy it. You can e-mail me at north@ptialaska.net also. I had a neck fusion of C 5-6 6-7, then was hit by another car it broke C 6-7 and they broke a tool off or some hing during my second surgery. I just found that out. Since I have dshgia (cant swallow) can't spell either . LOL -I'm going crazy. All this pain medication don't seem to make too much of a difference anymore. What kind of mental disease can you get from t? I reverse things and recall things wrong. I need help and a friend. Will you be mine. Autumn from Alaska

Glenda - 06/02/99 07:48:17
My URL:http://geocities.datacellar.net/Heartland/2451
My Email:Ngred@aol.com
Comments:
Hello I am a fellow RSDer I have had it for 4 years and just recently had a SCS installed but before I could go home I had it removed. When I woke up from surgery my head, ears,chin, throat and entire right side was hypersensitive i could not even have a hair touch me without me screaming in pain. I would Like to get with you and become friends. I also cohost a RSD chat on AOL email me if you wish at ngred@aol.com

THOMAS A MONTI - 05/31/99 20:53:23
My Email:DONT HAVE ONE AT LIBRIARY
Comments:
BIGGEST BATTLE EVER GONE THROUGH BUT NOT GIVING UP IM 26 WAS IN CAR ACIDENT RAN OUT OF INT.COVERAGE BEFORE SOME ONE TOLD ME ABOUT RSD OTHER INT.COMPANY IS AT FAULT BUT ARE NOT HELPING ME GET MEDICAL ATENTION IVE JUST UNDERGONE A TRIPLEFASE BONE SCAN BONE OSS WAS REPORTED EVERY DAY SWELLING IN LOWER LEFT LEG PAIN HARD TO EXPLAIN WAY THE PAIN FEALSSHARP BURNING AT TIMES AND BURSTING ACING CANT HACK IT NOMORE!!!!!!!!!!

Bone - 05/22/99 16:41:12
My URL:http://debbiemarines45@hotmail.com
My Email:debbiemarines45@hotmail.com
Comments:
This is a really great site Sue, and you are a very kind and thoughtful freind.....love and hugs Bone

Mike - 05/21/99 10:29:33
My Email:mp3@epix.net
Comments:
I don't have RSD but my wife does. Today we're going to see aspecialist in NJ in hopes he can help her. I see what she goes through every day. Somrtimes she needs a friend. Nice site.we'll check back. In PA.

Ann Wylie - 05/19/99 05:06:43
My Email:sas1@netusa1.net
Comments:
Hi, Ihave had RSD for 2 years and only recently got a doctor to finally diagnose it. I had 3 surgeries on my left foot for what the dr. told me were neuromas. Ihave my doubts about the neuroma 2&3. I'm very angry at the dr. and he didn't tell me anything ike this could happen. I have had blocks and tried different medicines and they have only made it worse.Succicide looks very good to me before I get worse. Sleeping only comes when I knock myself out with drugs. There really isn't any hope or a cure. Ihav been told this by doctors at Mayo Clinic.So where does anyone go from here?

Bee - 05/16/99 18:42:33
My Email:crallhiny@neworld.net
Comments:
Great Web site, Suzanne. Thanks for responding to my e-mail from yesterday. I understand about bad, terrible & horrible RSD days~~no need to apologize. Hopefully I'll see you in a chat room again real soon. Have a great Sunday :o) Glad you're smiling, Bee

J.C.&Sharron - 05/15/99 05:14:26
My Email:Auchi@webtv.net
Comments:
WE really liked your site. We both have RSDS (really stupid diease SYdrome IS what we call it. See I am J.C. ( I have terimnal RSDS because IT ha spread to my organs) Sharron has it in both hands and Left leg. I have it in both Arms, both HANDS, both LEG , BACK, NECK, both FEET, pretty painful.WE both hate the ole monster (rsds)WE hate the burning, doctors that think we are crazy, (all in our heads they say) If they only had it for a couple of days they would change their minds awful quick. Would they not Please write us we need all the friends we can have to fight this awful monster ( really stupid diease sysdrome) THANKS J.C. & SHARRON

Sharon Griffin - 05/14/99 13:37:37
My Email:sharon.griffin@dialogic.com
Comments:
I've had RSD since 1983 and have learned to live with it--what's the alternative? Very pretty site you have here!

Melinda Lancaster - 05/14/99 06:12:42
My URL:http://geocities.datacellar.net/Heartland/Oaks/melindaspage.html
My Email:mlancaster@columbia.total-web.net
Comments:
Sue: I have visited your site for quite some time now. I find solace here. I too am an RSD sufferer. The thing that blows my mind most is that I peeked in your guestbook and it is full of people with RSD. Here, where I live you would think I have leporsy. Neve theless, God has been good. I too am currently having a relapse so I can relate. When you feel up to it please come see my RSD page. I have pictures and my story. I have done over 700 pages of research on RSD but right now I just provide excellent links a d leave the medical stuff to the "big leaguers." I will e-mail you my url and I pray that God will do a wonderful work of healing in your life!

Sheila Mulwane - 05/13/99 15:25:11
My Email:smmom24@yahoo.com
Comments:
Dear Sue, How are you today? Kerry is having a bad pain day today. He had a stim implanted a couple of weeks ago. I called the doctor today and he thinks there may be a fluid buildup and that the stim may need adjusting. We are suppose to see him onday so he is hoping to have the medtronics guy threr so that the situation can be assesed. Kerry has had rsd since Oct 95 after he was steuck by a pickup truck. It started in his left leg and had traveled to his right leg ,both arms and his chest. Th stim has helped considerably but this back business is really hurting him today. Sheila

Anna J - 05/13/99 15:02:47
My Email:shaunsheep72@yahoo.com
Comments:
#Hiya Cool web site will be back soon to look at it more see ya Anna J

KAREN - 05/11/99 06:30:12
My Email:KGOOSMAN1@AOL.COM
Comments:
I too have RSD. I was diagnosed September 1998. I am a nurse and was working in a Ambulatory Alzheimer's unit when this whole began from a bad sprain of my right ankle. That was January of 1997. I had othroscopic surgery on my ankle March 1997. The pain r mained and to make a very long story short I found a new job that I thought would require less walking, wrong! All I could do was go to work and put-up my foot when I got home and I iced it every night. I got this job in August of 1997 and by late Septemb r my foot was blue/purple. They also suspected tarsal tunnel syndrome. I was sent for all of the lovely tests and finally had a spinal cord stimulator inplanted which took 4 surgeries in Jan., Feb., March, and April of 1998. The last surgery the did a lam nectomy, which then left me with horrible back pain and ultimately the RSD was not any better. I was sent to more specialists, neurosurgeons, anesthesiologists, etc....I am now facing more surgeries but since 2 of the previous surgeries and all of the syp thetic blocks were done with me awake I refused to have the radiofrequency lesioning done as I would have to be awake, and I told them no more with me awake. I am due to have a morphine pump trial, then the implant, if successful, and the SCS removed and robably will have the sympathetomy done surgically. This is so frustrating as I am sure you know. I went through nursing school and never had heard of RSD and had never encountered it before. They have told me that I will never do clinical nursing again. ight now I can't even drive to a job. I graduated from nursing school i 1995 after waiting 12 years to go to school. I will probably never do nursing again and I need to find something that I can do out of my home. Well anyway, thanks for listening and I would love to hear your story and I think your web page is wonderful. Thank-goodness for computers, right? That's all for now, hope to hear from you soon........Karen KGOOSMAN1@AOL.COM

Nancy Krebs - 05/07/99 14:19:25
My Email:rgmfnskn@cland.net
Comments:
I have had rsds since 1990, started out as carpel tunnel. Had carpel tunnel release on right hand, then developed rsds. Had no idea what it was, and no one wanted to tell me, especially workmans comp. Now I see why. Sights like yours have helped me lear alot about this monster disease. I had no idea there were so many people with the same pain and problems that I have, until my husband bought me this computer and put me on the net. Now I don't feel so alone. I have lost a lot of friends over this. My da s are spend alone until my kids get home, then they are upset because they have to clean house and do laundry.THOSE ARE SUPPOSE TO BE MY JOBS. I am to care for my family and house. If I sound angry, I AM. I would love to talk with others that deal with rsds everyday. Jesus has been my strength and comforter. Jesus wept.

jim - 05/06/99 03:16:40
My Email:freezechec@aol.com
Comments:
i like your homepage. i would like to have a pen pal who knows what im going though.i just found out i have rsd in one of my legs.

sally joan gillespie - 05/04/99 15:46:21
My Email:salgil1218@aol.com
Comments:
I am currently awaiting SSI benefits as a result of this disabling disease which bestruck me following a simple plantar ligament ligation in my right foot in 1995. Prior to that I had worked as a Paramedic for many years in NM and TX.....I lost my insura ce after they diagnosed the disease, so I only had treatment during stage I...applied for SSI immediately, was denied, waited 2 years and reapplied, was denied, appealed, was denied on the basis I made $5000 working in my home as a medical transcriptionis modeming emergency room reports to the largest medical facility in southern Texas. I have been disabled, falling, in pain constantly loss of 70 lbs, loss of all friends and family contacts...including my 3 grown professional sons and my 4 grandchildren who thought for the last 4 years that grandma was "crazy." Frankly, so did grandma. Now at 50, I have had so many anxiety and panic attacks that I suffer from coronary artery disease and uncontrolled angina.....I nursed my mother to her death for 18 mon hs with cancer of the ovaries in 1988, so I immediately had a complete hysterectomy along with this foot surgery in 1995. In 1994, I nursed my father, a physician in Albuq NM for 45 years and never sick a day in his life, to his death 7 months after his etirement. He died from Lou Gehrig's disease....similar in some ways except he had no pain....just fear and the constant feeling of impending doom. I do not know if this is related to that disease in any way, but I know his problems started with his feet ..same as me, progressing upwards to the trunk of the body....now my left shoulder, arm ,wrist and hand are numb after about 5 minutes on the keyboard...my production is 19% of normal.....quite humiliating considering I was top chair in the last hospital worked in..typing 1250 lines a day. I am 50 now...and pray each day that I do not wake up. No one visits, calls, writes, and aol never "has mail." I know that my family is as sick of my complaints as I am...but to abandon me like this has sent me spir ling into a depression and paranoid state I shall never recover from. I have gone from living in a $185,000 home to a $362/mo apt on an Indian Reservation east of El Paso...I don't drive anymore as I am afraid of the cramping and charley horses in my fee and calves and my eyesight worsens daily. Flunked the driver's license test 2 times last week for the first time in my life.....I have never worn glasses....but I could not see those letters/numbers for the life of me....and there is not much left of th t in me. My contractor called me to terminate my contract for lack of production last Sunday...she changed her mind at the last minute. It is all I have and only make about $100/wk....otherwise Adult Protective Services, LULAC, and every other charitabl foundation in town has been tapped by me....My family as a last resort helped me as well this past year after two heart attacks. Will it ever end? What has happened to my life? The APS kept taking me to a psychiatric hospital as they thought I was crazy too.....I was discharged as a client after 15 months of nothing, no counseling, no medications (except my own Bufferin and Premarin I had to buy) because they had an MRI done and a new doctor's evaluation.....and SSI approved my case 1/28/99...owe me $16,000 in back pay...but at the last minute some woman at the SS ofc denied my case (after all those doctors in Austin and Dallas approved it) on the basis that I made too much money in 1998....$5000 as a self employed medical transcriptionist....none of the income was taxable as I had business expenses to offset it immensely to the tune of $200/mo phone bills for two modem lines required by the contractor. I owe my family about half of the $16,000 to date....if I ever get it. I have hired two advocates to go after Soc Sec....as they now know they were in err in what they did....No treatment since 1995 and this is 1999....I am in Stage III+ of the disease and looking for a wheelchair ...to negotiate around a 400 sq ft apt. What God would do this to a human being who for 33 yrs has worked constantly (except for 2 wks off 3 times for having babies), raised a dentist, RN, Public Relations professional, kept a beautiful home, graduated fr m Tx Tech Paramedical Program of 360 hours doing my clinicals on my days off and attending real estate school at night.....Married 25 years....and he abandoned me with two sons still at home and right after the birth of our first and only granddaughter... .Never saw him or knew where he went for 9 years....He showed up to the middle son's wedding in San Antonio TX--the dentist I have been struggling to help through 12 years of college to get his speciality in prostadontics. He married a female dentist he randuated from Baylor with and they both have practices in Dallas now. The college thinks his father is dead as they always wanted my income tax return to qualify my son for his state school loans to attend Baylor which now total (because his wife had to borrow the same amount as he did) $250,000!!!! And his father has the nerve to show up at his wedding....he is a professional civil engineer with Raytheon making over $100,000 a year!!! And I am on food stamps!! THANK YOU RSD for destroying not only my health but my relationship with my children, my grandchildren, sisters and everyone of my friends. And my sister is an RN and suggested the other day that I try a naturopathic physician...my father would roll over in his grave. Why don't I just go to a CHIROPRACTOR?? Oh and dietary changes are essential...really? She weighs 350 lbs....I have gone from Size 3X to size 14 in 16 months. I think it is called a food stamp diet!! God bless you....you are in my prayers.... Sally Gillespie salgil1218@aol.com

Norma Hall - 05/04/99 10:37:53
My Email:NHall336212@aol.com
Comments:
I have RSDS since 3-19-96, and I need a friend that can understand the pain. I am waiting for Workman's Comp to approve another surgery and it as always is taking forever. So I sit here and get worse while they take their sweet time to decide if I get t e surgery or not. I know that they will approve it but waiting always is stressful and we know what stress does to RSD. I have it in both legs and it is spreading to my hands. I always pray that no one else will ever have to feel the pain that I have fo the past3 years. It really helps to no that their are people who can just tell me that I'm not crazy and that the undiscribile pain is real. Thank you for listen to me . Your Friend In RDS Norma

Bonnie Gornick - 04/24/99 00:35:18
My Email:bgor553155@aol.com
Comments:
Your home page is beautiful. I am really glad to see that other people with RSD are reaching out to people. I have full body RSD. I live in PA too. Where do you live? I sure would love to hear from you. Thanks so much for your page.

Debbie - 04/16/99 18:11:16
My Email:darlndeb@tir.com
Comments:
I thought your home page was awesome, I'll write you soon, Bone

terry benoit - 04/16/99 00:00:17
My Email:benoit@ici.net
Comments:
it's a beautiful I've just been diognsed with rsd and i'm really scared. I can be e-mailed at benoit@ici.net I would appreciate to hear from other rsd'ers

- 04/15/99 03:02:24

Comments:

Thomas Dodge - 04/13/99 02:47:47
My Email:Dod6936
Comments:
In 1993 I was hurt on the job.After seeing a series of doctors & 10 months later.I Found out I had RSD.had a spinal stim.unit put in about 2 years ago.but it does not help anymore.The RSD Starting in my entire rt.leg and it is now in my leg.

Kimmi - 04/10/99 02:42:15
My URL:http://members.tripod.com/~ibkimmi/
My Email:ibkimmi@mindspring.com
Comments:
Just wanted to drop in and say Hi..I am sorry to hear about your Pain,Living with Chronic Pain is not fun by anymeans..My hugs and prayers to you for a pain free day. I have enjoyed my visit to your site,thank you for visiting me Kimmi

nellie - 04/07/99 20:00:05
My Email:jharle@idnsi.net
Comments:
Found your web page, read it, thought I'ed give it a try. The doctor told me I have somekind of M.D., He can't seem to tell me what kind of muscle disorder it is, have had it since 1985, and are time when I don't want it or anything, anymore. I know your roup is different than mine, but couldn't find one that would talk about M.D. Thank you for your time. And if you know of any groip that does chat about M.D., could you let me know. Someone in pain. nellie.

shelly - 04/06/99 01:28:07
My Email:shelly@starix.net
Comments:
I was 21 yrs. when I slipped on a wet floor at work , I sprained my left ankle and twisted my knee. I have had every kind of block available as well as a lumbar sympathectomy, I have a twelve in. scar from my front to my back. It didn't help for very long , my RSD got worse, it is now from my toes all the way up to my shoulder on my left side. I would love to be able to have pen-pals whom understand what we go thru everyday . I am now 30yrs.old ,I live in York county, in PA. Please write and I promise I wi l write back . Thank You , Sue , for doing this for all of us RSD sufferers ,family and friends too. Shelly*

shelly - 04/06/99 01:26:43
My Email:shelly@starix.net
Comments:
I was 21 yrs. when I slipped on a wet floor at work , I sprained my left ankle and twisted my knee. I have had every kind of block available as well as a lumbar sympathectomy, I have a twelve in. scar from my front to my back. It didn't help for very long , my RSD got worse, it is now from my toes all the way up to my shoulder on my left side. I would love to be able to have pen-pals whom understand what we go thru everyday . I am now 30yrs.old ,I live in York county, in PA. Please write and I promise I wi l write back . Thank You , Sue , for doing this for all of us RSD sufferers ,family and friends too. Shelly*smallheart

Kathy - 04/05/99 22:12:54
My Email:LLmonlina@aol.com
Comments:
Hey Sue me again I have been dealing this rsd for 20 years and I found out in 1987 I have Multiple Sclerosic to. It's a bitch to just make though the day!! With all the pills and shots it's not alot of fun,but I try my hardest not to show it.Good job on t e site! Kathy

rock bene - 04/05/99 16:48:43
My Email:rbenefam@philly.infi.net
Comments:
hi sue! THANK YOU FOR BEING MY FRIEND...I HOPE WE'LL STAY FRIENDS FOR LIFE! this monster we have has joined us for infinity...that's the good part of rsd! anyway...i just wanted to tell you that you are a very special person and that you are doing a tremendous jo with your website and spreading the word about rsd! take care... your friend in battle, rock

Kathy - 04/05/99 03:36:44
My Email:LLmolina@aol.com
Comments:
Nice JOB Sue!!! Monster is right.Seeing how the docters don't what to do I think this is the best way to get informating on this monster. Keep up the good work Sue

michael - 04/05/99 03:02:06
My Email:mma@midwest.net
Comments:
i also have the beast. i was diagnosed in 1994. i guess i have come to terms with it. now if i could just find a way to convince other people that the beast is real. i think if we could educate the world about the beast, it would be a big breakthrough. i lso , am looking for a friend to talk to about the beast, i am married and my wife has been great, i don't know what i would have done without her. she also has a disability,(djd) degenerative bone and joint desease. i know that she is in pain alot she ha to be careful not to move wrong as to not hurt herself and i know that she understands pain but rsd i think is a different kind of pain. there is no relief the pain is always there. i got hurt at work and workerscomp paid for one year then quit since th n i have had no insurance and no medical coverage so there is no medication to help with the pain. i take a lot of over the counter meds to try to stop the pain but as of yet no success. sometimes it helps to talk to someone who knows the pain of the beas . thank you for allowing me to contact you , and likewise if you need a friend please feel free to contact me.

susan - 04/01/99 14:33:14
My Email:alsuz2572gateway.net
Comments:
i have had rsd for seven years ihave never talked to anyone else who has rsd its avery painful reality of my life .

Susan Jackson - 03/30/99 21:56:00
My URL:http://www.powernet.net/~autoparts/index1.html
My Email:lvsusan@hotmail.com
Comments:
Thanks for being here...Susan

Shirley Russell - 03/29/99 22:00:23
My Email:Squarley@aol.com
Comments:
Hi. glad to find you. i have had RSD for 6 and a 1/2 years. and i have just found out that it has spread. i would like to talk to you threw e-mail. and share info. i am in Lewes DE.

Kathy - 03/27/99 22:45:40
My Email:kathyspade@yahoo.com
Comments:
Thank you for your page. I am sorry that you hurt but am glad to know that I am not alone. My disks are leaving in my back and I have Fibromyalgia. At times the pain is more then I can handle. I know that I will die from the back problems. First the disks leave then it's a wheelchair and then God willing we get to die. At least with death there is no more pain. Your page is so peaceful. When you h ve time please email me. Again thank you for it.

Kathy - 03/27/99 22:41:13
My Email:kathyspade@yahoo.com
Comments:
Thank you for your page. I am sorry that you hurt but am glad to know that I am not alone. My disks are leaving in my back and I have Fibromyalgia. At times the pain is more then I can handle. I know that I will die from the back problems. First the disks leave then it's a wheelchair and then God willing we get to die. At least with death there is no more pain. Your page is so peaceful. Again thank you for it.

Sue - 03/25/99 15:01:00
My URL:http://geocities.datacellar.net/Heartland/Woods/1689/
My Email:lucky3@ptd.net
Comments:
I want to thank everyone that has signed my guest book. I will be updating my site, so make sure you bookmark my site for later updates. Thank you a friend..... Sue

Ellen Fister - 03/21/99 04:56:06
My Email:ellen.fister@dol.net
Comments:
RSD has made a huge change in my life and my husbands. I'm just over the Pa line in the most north eastern part of Md. There is a support group in southern NJ. You may find some Pa people there depending on where you are located.

Art Davies, P.T. - 03/20/99 03:22:10
My Email:artandnina@msn.com
Comments:

Rene San Filippo - 03/16/99 23:46:35
My Email:oparenwebtv.net
Comments:

john barney - 03/15/99 08:15:13
My Email:none
Comments:
I'm getting info for my wife Brenda,we don't have a computer,I'm doing this from work,please be a friend to my wife,we have been to so many doctors,she has rsd, thank you so much,she is so alone with this

Terry - 03/10/99 00:26:08
My Email:rall@noln.com
Comments:
Sue, Read your story today in the Pocono Record, and also visited your home page, thought it was just beautiful, keep up the good work. My husband has been living with chronic pain for the last 9 years, and he understands your suffering. We also live in Pa. We are thankful for the Doctors, who understand and treat chronic pain,because some of them just give up and tell a person it is all in their head. Glad you found a Doctor to help you with your pain. May you have a peaceful day. Love Terry

IDA - 03/02/99 17:50:17
My URL:http://www.orci.com/~invisible
My Email:invisible@orci.com
Comments:
Sue, thank you for visiting my site, so I could meet you! And, thank you so much for creating this page! You are truly helping others in the midst of your enormous pain!

Connie judd - 02/20/99 23:14:34
My Email:penguin903@webtv.net
Comments:
Hi Sue, i really like your home page.i have rsd. fortunatly for me I was diagnose in the early stages. i try to maintain with nerve blocks and medication.It certainly does change your life.As a result I am no longer able to work any more.Find myself getting depressed at times. I don't think anyone under tands unless they have it. Thanks for listening. Connie. I live in up state N. y.

Anna Jackson - 02/18/99 09:55:22
My Email:shaunsheep72@yahoo.com
Comments:
It is nice to know that there are people out there who understand. I am a 27 yr old ex field hockey player and after 6 knee operations I am in a mess. After 13 yrs of problems and no-one believing me that my knee swells, gets hot and red and painful so eone has actually seen it and the wheels are in motion to see what it could be. I have read some of the info on the various web sites on RSDS and keep telling myself not to get excited but the more I read the more it makes sense. I am just glad that som ne believes me now and that it is not 'All in my head' as my old surgeon told me !!! It would be great to talk to you, even if it just to say hi from here in sunny England !! AJ

Karen C - 02/18/99 05:04:17
My Email:karenjackie@prodigy.net
Comments:
Hi kiddo, am on the same rsd list that you are. Your first page is very pretty. You beat me w/ rsd by 5 years. Dont you feel lucky? I feel like an old timer when I read the list with all these people who have had it only 1-2 years. Seems like so long ago Would love to talk. Karen C Phx Az

Maria - 02/18/99 05:03:15
My Email:MGerh33595@aol.com
Comments:
Im soo excited to find your website. Its a great site with some good "words of wisdom". Im in Florida...so Im a ways away....however, could use a friend to help me get thru this RSD "stuff"!! Email me if you get a chance....your website is great!!! tak care...

Trudy Hart - 02/17/99 05:21:36
My Email:Elyse211@aol.com
Comments:
I have RSD for about 5 months. I am still quite hopeful and am treating myself w/aggressive therapy. Hoiwever, after researching, and reading other people's testimonies I see a dismal future. Any advice?

linda kopp - 02/14/99 10:35:21
My Email:little-kopp@webtv.net
Comments:
just stop in tonight,haveing lots of pain ,you have a nice site,hope you do get a group going, @{~~~~~~~~~~~~~~@~~~~~~~~~~~~~~~~}@ thanks

Karen B. Noordhof - 02/13/99 19:32:59
My Email:Karenglenn@Webtv.net
Comments:
I love your "Home". I too am looking for a friend and would love to communicate with you. I'm new to the Web, but not new to this Monster!!! I wish you less pain. Sincerely, K.B.

Becki/Richardson,TX - 02/13/99 19:13:46
My Email:rfmoore@airmail.net
Comments:
Hi Sue! What a beautiful site! I didn't know about your artistic side--you must be a beautiful person. Thanks again, Becki

Kay Hartgrove - 02/13/99 17:31:46
My Email:KHartgrove@aol.com
Comments:
Your page looks great. I would like to be friends with you. I will be coming to PA sometime near Easter. My fiance's parents live there. With this dreaded condition, we all need friends who understand. Kay

crystal vickrey - 02/13/99 01:01:01
My Email:we r pics2@aol.com
Comments:
Hi all. My name is Crystal and I'm a 21 year old female who is dealing with the same pain and confusion as the rest of you out there with RSD. You're right Sue, it is a monster, and it can rob and steal from you. But, please, I beg you, NEVER, any of yo , give up hope. There is still life during and after RSD, I just know it. If any of you ever need to talk, e-mail me PLEASE. I understand everything you're going through because I've been placed in the same boat. My e-mail address is WE R PICS2@aol.co . WITH ALL MY LOVE AND PRAYERS, GOD BLESS YOU ALL CRYSTAL

Catherine - 02/07/99 18:23:00
My Email:carice@elp.rr.com
Comments:
SUE, You have a beautiful web page. I like the animated scenes, just gorgeous!!! I also like the links here and the music too. {^;^} I am glad to meet you , only sorry for the circumstances that brought us together hugs, Catherine

Rory - 02/06/99 23:52:05
My Email:rory333@hotmail.com
Comments:
Dear Sue: Thank you for your site. It is really important that RSD-sufferers know that there are others out there who are experiencing the same symptoms and that so many care for and about them. Your cause really touches my heart as my brother suffered so badly from it before he passed away in December 1997.

Carolyn - 02/01/99 06:51:19
My Email:marshall@hit.net
Comments:
I to have the VERY painful RSDS. It started in my left foot after surgery in Jan of 91 for a bone spur and tarsal tunnel. In the post op x-ray the bone spur is still there and now I have RSDS. I was mad at the Dr for a long time. I have since found ou that I guess I can't blame him for this "monster" in my body. I know the sleepless nights and the very long pain filled days. The friends and family that don't realize the pain is real. The burning constant pain. I have only been on oral meds because my Dr. doesn't really know what to do for it. I am learning alot from the internet. I only got on internet Jan.23, 1999 and already have learned more about RSDS than I could find anywhere else since I was diagnosed Sept. 95. I am going to copy some and ake them to my Dr. He is willing to learn more because he has to take care of me or send me to someone who does know. I haven't heard of any one else in my town with this "monster". Your page is beautiful and I will be back to see more another time and another. Thanks for being there. Hope to hear from you. Carolyn

Carolyn - 02/01/99 06:17:46
My Email:marshall@hit.net
Comments:
I to have the VERY painful RSDS. It started in my left foot after surgery in Jan of 91 for a bone spur and tarsal tunnel. In the post op x-ray the bone spur is still there and now I have RSDS. I was mad at the Dr for a long time. I have since found ou that I guess I can't blame him for this "monster" in my body. I know the sleepless nights and the very long pain filled days. The friends and family that don't realize the pain is real. The burning constant pain. I have only been on oral meds because my Dr. doesn't really know what to do for it. I am learning alot from the internet. I only got on internet Jan.23, 1999 and already have learned more about RSDS than I could find anywhere else since I was diagnosed Sept. 95. I am going to copy some and ake them to my Dr. He is willing to learn more because he has to take care of me or send me to someone who does know. I haven't heard of any one else in my town with this "monster". Your page is beautiful and I will be back to see more another time and another. Thanks for being there. Hope to hear from you. Carolyn

carol - 01/31/99 22:57:17
My Email:cabirchmi@aol.com
Comments:
hi sue what a beutifull site. i live in fla. i have had rsd now for almost 3yrs. i am in the 3rd stage. it started in my right wrist from a bump to it at work. i have had 5 surgerys nerve blocks and now they want to do the scs. it has spread from my wrist up my rm the right side of my torso and now into my right leg, i would really like to hear from anyone who would like to chat and also anyone who has had the spinal cord stimulator. good luck to all who suffers with this horrible beast carol

Jasmine - 01/30/99 14:06:34
My Email:jazzcwpg@icenter.net
Comments:
GREAT HOMEPAGE.AND VERY PEACEFULLLLL

Judy Smith-Jones - 01/28/99 05:47:24
My Email:jdribbles@hotmail.com
Comments:
Dear Sue, Thanks so much for your homepage. You did a wonderfl job on this and spent a great deal of ime and energy. Its beautiful! I too am a co-sufferer along with u. I had this monster for 6 years and felt really alone and frightened. Mine starte in rt leg and now is is leg, hands. Here's hoping all have more pain-free days to come luv and Hugs Judy Please respond back, I need all info. I can get because my mother also suffers from this disease however she doesn't have access to internet.

Sandy - 01/22/99 05:47:17
My Email:sandy1065@yahoo.com
Comments:
Hi love your page. Yes I have rsd. I'm from pa. to. Sandy

LYNN BISHOP - 01/15/99 22:02:20
My Email:SSMITH3212
Comments:
HELLO MY NAME IS LYNN BISHOP,I HAVE JUST BEEN TOLD I HAVE RSD. I WAS IN A CAR ACCIDENT OVER ONE YEAR AGO I HAVE BEEN THROUGH EVERY SCAN,X-RAYS AND NERVE STUDYS THAT YOU CAN THINK OF. SO THEY NOW TELL ME A HAVE RSD. I DON'T UNDERSTAND IT ALL I KNOW IS THAT I HURT SO MUCH ALL THE TIME.THE MEDS DON'T HELP. SOME TIMES I WISH THAT I COULD HAVE BEEN KILLED IN THE ACCIDENT. THIS MONSTER IS KILLING ME,I USED TO BE A VERY ACTIVE PERSON I PLAYED SOFTBALL,RODE JET SKIS,HIKED JUST VERY ACTIVE AND KNOW MOST DAYS IT'S A L I CAN DO TO GET OUT OF THE BED. PLEASE TELL ME IS THERE HOPE SINCE THEY FOUND IT SO LONG? THANKS I LOVE YOUR WEB SITE. LYNN BISHOP

LYNN BISHOP - 01/15/99 21:49:10
My Email:SSMITH3212.COM@AOL
Comments:
I WAS JUST TOLD THAT I HAVE THE MONSTER RSD. I WAS IN A CAR ACCIDENT OVER A YEAR AGO. I HAVE IT IN MY RIGHT HIP AND LEG. I'M REALLY SCARED AND DON'T KNOW WHAT TO EXPECT. CAN YOU EVER GET RID OF THE PAIN? THANKS FOR YOUR TIME. LYNN

- 01/08/99 18:47:27

Comments:
Love the page Sue! Its great! Your friend, Anita

Mike Otis - 01/06/99 07:13:23
My Email:MOtis@uswest.net
Comments:
Great Job!!!!

Trevelyn Palmore(aka.EagleLady32) - 01/04/99 15:34:48
My Email:trevelyn18@hotmail.com
Comments:
Hello Sue.. Found your page and just had to write to you as well..first of all i have had rsd for the past 8 years..and i was the third person to get a dorsal column stimulator for chronic pain caused by the rsd..so there is some other some other ideas that is able to help people now with dealing with the pain of rsd..if anyone would like to know more about the implants i can and would be happy to tell anyone about it or if you just need a friend to listen to you,or just need a friend that understands what you deal ith everyday with pain and the problems of rsd..please write to me..would love to correspondance with anyone here that happens to see this page..Sue you have really a great page here..keep up the great work adn if you find the time please write to me.Love and Hugs to everyone here on the net. Friends Always, Trevelyn aka.EagleLady32 (p.s.if you ever see me here in vp please say hello to me.)

Lee Harvey, Aces & Eights - 01/01/99 21:29:34
My URL:http://www,mint.net/~acesn8s
My Email:gleeh@mint.net
Comments:
Hi Sue.. Thanks for stopping by the bands web site. We are in Maine and would be more than happy to have you stop by one of our shows as our guest sometime.

Lynn - 12/26/98 12:57:43
My Email:a.c.macrae@talk21.com
Comments:
Hi Sue, thankyou. Your page really helped. I have had RSD for over ten years - hard going.

Peggy - 12/20/98 04:21:46
My Email:pdfrench98@yahoo.com
Comments:
HI i have been dealing with RSD for overa year now. I don't have alot of info. Could use friends that could relate. Peggy

Gina Sturm - 12/18/98 00:26:55
My Email:gsturm@etma.com
Comments:
Yes, I too have RSD on top of FMS. Friendships and emotions shattered and trying to pick up the pieces. Still have a long way to go.

Susan Yelken - 12/08/98 20:13:32
My Email:stingersoccer&hotmail.com
Comments:
I signed yesterday, but forgot to give my full e-mail address. Your guestbook is really something to read. This has been a very tough day and it has helped to read your guestbook. I care, S

Susan Yelken - 12/07/98 23:43:37
My Email:soccerstinger
Comments:
I have had RSD for almost four years.It first started in my right foot and now involves both legs.My mobility is really being affected and the pain is so much worse. I would really like to be a friend .I think it would really help Susan

Darla Adams - 12/04/98 04:26:38
My Email:dadams1055
Comments:
I also have RSD. I found your words to be very comforting and informative. May God bless and guide you.

- 12/04/98 04:10:53
My Email:JAGGER@xtra.co.nz
Comments:
I have RSD in my left knee and it's been nearly five years(the hard way) Thanks People!

sue - 12/03/98 15:11:42
My Email:sue@tsta.org
Comments:
I have rsd in my left lower leg.

Amanda Iannuzzi - 11/30/98 19:36:28
My Email:Mandolino1@aol.com
Comments:
I have just been diagnosed with RSD in the third stage. I am only 18 and would appriciate any help. Thank you.

- 11/27/98 07:34:50

Comments:

Karen Whitmore - 11/27/98 02:13:09
My Email:KSW29@aol.com
Comments:
I have had RSD for over 8 years now and have lost my right leg because of it. I am still trying to deal with the pain. I am on alot of medication as well as narcotics. I am sure my story is one of many with this illness. Thank you for listening.

Bryan - 11/26/98 20:28:30
My Email:bek2769@earthlink.net
Comments:
Hello,I have had rsd for about 8 months now.It's been difficult for me to explain to family and freinds what's wrong with me, my hands are always purple&numb. I would love for you and other people to e-mail me !

walter - 11/24/98 21:33:20
My Email:eduross
Comments:
have rsd looking to see if there is a chat room for people with rsd thank you for your help

Chris - 11/23/98 00:29:14
My Email:ceiche4@aol.com
Comments:
I live in Pa too and have RSD. E-mail me

- 11/22/98 19:57:56

Comments:

- 11/22/98 19:47:48

Comments:

Sandy - 11/22/98 03:51:57
My URL:http://geocities.datacellar.net/HotSprings/Falls/1006/
My Email:Mollypup@webtv.net
Comments:
Hi Sue! This is Sandy from the RSDHope Digest. Great homepage!!! Keep at it! Love, Sandy

Fran Ditri - 11/22/98 03:42:13
My Email:phran10@aol.com
Comments:
misery loves company!!!!!

Yvonne Wills - 11/21/98 21:29:26
My Email:cutheart@netscape.net
Comments:
Your web page is totally beautiful. I am writing for friendship, I have been living with RSD for 19 months from a car accident (not my fault) I am 33 years old with 2 children (15 son 8 daughter) I was very angry with the lady who hit me. I take neurontin 400mg 3x daily. I tell you sometimes, I don't know if I'm coming or going half the time. Please feel free to email me back at cutheart@ netscape.net Will be waiting to hear from you.

Lawrence Langman - 11/13/98 16:29:11
My URL:http://members.tripod.com/~IrishKnight/
My Email:IrishKnights@yahoo.com
Comments:
Thank you for signing my guestbook, and i really hope you enjoyed my site. Your right about it being a monster, i have the diease full body, and it has'nt been no picnic. It just seems to get worse and worse, mentally, and physically. Best wishes to you. Larry (IrishKnight)

Paula eckert - 11/07/98 04:20:28
My Email:camel@sdiclub.com
Comments:
You invited me and I came

FLoWer - 11/03/98 00:57:04
My Email:anrimi@hotmail.com
Comments:
My doctor thinks I might have RSD due to a fall down some stairs. I am scared to death, because they want to run tests on me and I don't know how this will affect my life if it turns out that I do have it.

June Campbell - 10/30/98 20:25:27
My URL:http://members .aol.com/MCampb5990/index.html
My Email:MCampb5990@aol.com
Comments:

Rochelle Odell - 10/29/98 02:42:25
My Email:rochelleo@prodigy.net
Comments:
Dear Sue, Hi, My name is Rochelle, and you are right, I do have RSD, now renamed to CRPS-and I unfortunately have it in all 4 extremities, with contractures and pain, that burning, gnawing, aching pain that NEVER goes away. Like you, I wish when I had first been diagnosed with this "monster" you and I call it, I would have sold cans to get treatment but by the time I knew what it was, and because it was a pre-existing condition, I waited amost 18 months to start. And my lif has turned into one nightmare after another--I have family that doesn't understand nor really cares to, my dad said it was "all in your head Rochelle and if you told yourself it didn't hurt, it wouldn't"--such ignorance there is out there. My goal is to one day maybe have RSD Houses-Most of us are mobile and can take care of ourselves, but there are times when we can't, and that's the time that the only ones who truly understand and can help are those who have RSD. I am visiting my dad in eorgia for one more LOOOOOOOOOOOng month--I'd leave tomorrow, but can't afford the added air-fare for changing. But when I return to California, I would like to try and find people who would invest in homes for us-where there would be no more than 4 at a time-no children and your ability to pay for rent and utilities is on a sliding scale--I will admit I don't have the vaguest idea whereto start but will probablu call the ARSDA and CRSDA and see if they can point me in the right direction. Mine started in my left foot and after all the invasive procedures began, it began spreading. I recently had a closed manipulation for my right hand contractures and with lots of work and tears it's now "within functional range"--of course the pain is the e but the ugly claw and contractures are gone along. It almost looks normal- Anyway, tell me about yourself and how yours started- I look forward to hearing from you, Rochelle

Dede Mulligan - 10/28/98 23:00:44
My Email:mulpro@ltis.net
Comments:
Hi Sue, My name is Dede, but you already knew that. I, too live in Pa., Hawley, on Lake Wallenpaupack, near Scranton. I have been living with this damn disease for over five years.I've been put through the ringer and have had just about every test, treatment, drug,procedure and last but not least surgery. I'd love to trade horror stories.Write back and we'll talk! I bet we are closer than we think! Dede

Beth Iles - 10/26/98 12:40:08
My Email:bethiles@hotmail
Comments:

Adina - 10/23/98 04:10:44
My Email:ilivewithrsd@mailcity.com
Comments:
http://pages.whowhere.com/health/ilivewithrsd I have included you web page on my web page. I am trying to spread the word of RSD! Than you for sharing it with me.

Marcy - 10/23/98 01:00:04
My Email:pa-lady@worldnet.att.net
Comments:
really like

Luis - 10/23/98 00:52:22
My Email:lmn2gki@aol.com
Comments:
Hi, I just "landed" here and really found your first page interesting. I live with the monster of chronic pain, Multiple Sclerosis (chron. prog.) and to top/or put the icing on the cake I have deteriorating progressive disc disease in the C and L areas. My days are filled with pain from the moment I wake up until I go back t bed after taking a few pills (20) during the day. I use a power chair to move distances over 20 feet. I am a retired Mathematics teachers from Brooklyn Tech. HS in Bklyn NY where I taught for 27 years until the ms and the monster decided that I had to retire. I am taking Neurontin and Motrin 800, Baclofen and Tegretol and, and...Oh so many different pills! Well if you find somebody with my inclination to torture and non-s-m tendencies it will be nice to hear from, Oh I forgot I am married to the same woman for 36 years and hope to continue for many more to come, I have three grown up children and live in th wonderful, square mile town, mostly accessible town of HOBOKEN NJ across the river from NYC I see the Empire State Bldg. from my window together with the whole panorama of the waterfront. Once more is nice to know we are not alone, well I think I shouldn t say that but at least we can comfort and exchange information with others in the same situation. Love, Peace and Health dear friends! ^5 Luis

Craig McGowan - 10/22/98 19:31:21
My Email:CMcgo24546@aol.com
Comments:
Hello Suzanne, I found your Homepage and it's beautiful. You have done something worthwhile and will touch many souls aching for friendship and understanding. Love, Craig **OO

Terri C - 10/22/98 15:54:57
My Email:MATCHENE@prodigy.net
Comments:
Dear Sue, Thank you for putting forth this huge effort and gift to those who are new to RSD, and even to those that aren't. I can not believe the road you have had to walk. I am so very fortunate that I have not had to walk a road that is anywhere similar to that. ou nust have the strength of a higher power to make it through that. Thanks again, my new friend,,,,,,Terri C

Parker Allen - 10/22/98 01:32:12
My URL:http://home.swbell.net/pallenjr/index.html
My Email:pallenjr@iname.com
Comments:
Great web site. It shows your kind, sensitive heart.

Kate - 10/19/98 19:06:44
My Email:madhouse@ihug.co.nz
Comments:
Sue Loved your homepage, I have the invisable monster as well and know how misunderstodd it and sufferers of it are. All the very best to you and maybe ( just maybe ) one day there will be a cure and I would not be ashamed to put you at the front of the line or the cure. I have had it almost four years and know now what hell really is. take care and * big hugs *

Melinda Hickox - 10/19/98 13:10:44
My Email:rick&lucy@net-magic.net
Comments:
Loved your web page,, my husbans has RSD. Hope you have a pain-free day love and prayers to you Melinda

cathy - 10/09/98 06:36:51
My Email:catkiene@sunflower.org.
Comments:
Hello. I too am a rsd sufferer. I believe I have had rsd for some time and it is just now being diagnosed. But, it appeart to be moving very quickly. the pain is mostly confined to my feet and ankles, but the numbness, burning and tingling is now in m calves, legs, right arm. My back also is siff and bothering me, no burning but the pain is constant. my doctor told me today he thinks i do not want to get better. yeah, i love to spend all my spare time getting needles in my back, getting pt 2-3x's p r week, countless doctor's appt seeking out other opinions, and spend most of my day wondering if i too will end up in a wheelchair with a morphine pump. if anyone else reads this, since i am newly diagnosed, does you skin around the initial area turn a most black at night. mine does, and now this discoloration has spead to other foot and ankle area. sometimes, they looked badly bruised. also, i have noticed my hair coming out in the shower , about 20 strands or more per washing. does this sound fami iar? i received this injury 9stress fracture across my heel0 in july 1997, before this i believe i had chronic plantar fascitis. anyway, my doctors had me continually on my feet while healing. in dec. 1997 i had a bone spur removed, entrapped nerves f om the healed fracture removed, damaged bone removed and my plantar ligament severed. my foot was ok for awhile after the surgery, but upon returning to walking a couple of months later as a mail carrier put me right over the edge. if anyone wants to ch t, please e-mail me. i feel all alone, i think my friends think i am a whiner, as well as my family. depressed, cat

Marti Ann Noel - 10/08/98 18:07:01
My URL:http://geocities.datacellar.net/Paris/Arc/9073
My Email:littlemiss78@hotmail.com
Comments:
Great page Sue! Thank you for signing my guestbook! Hope to hear more from you!

Alice Jean - 10/08/98 13:13:45
My Email:ajbleacher@enter.net
Comments:
Did a great job on your website and the music was wonderful. Sounds like you have had your share of RSD problems. I have had RSD for almost two years, started in my neck and now has traveled from my left eye to the top of my left foot. Went through all he blocks, and IV's and still not any better. I also live in Pennsyvania, close to Reading and Lancaster. Warm, loving breezes, Alice

KRISTY MITCHELL - 10/07/98 02:52:29
My Email:BNSFORT@GATEWAY.NET
Comments:

Karyn - 10/06/98 00:36:36
My Email:karyn111@aol.com
Comments:
Hi there. What a nice web page. My name is Karyn and I too have RSD. I fell on 1/25/98 and thought I had basically sprained my knee, fractured my tailbone and hurt my right wrist and arm.....well, then the burning started in my knee. Then the lower le became red (sound familiar?)....then the lower leg became purple. Then a blood clot...nerve blocks, medications, a sympathectomy, etc.,etc. Now I have RSD, the same knee injury (they are going to try surgery in a couple of weeks) and the threat of ampu ation "if" the surgery exacerbates the RSD as bad as it was before with the blood clot. Did you have the Sympathectomy? Do you have any advice? I feel like I've tried everything almost and it's still there. I've been on crutches since 4/2/98:( I'm st ll perky and happy 5 days a week, but the other 2 are getting more difficult:( How do we sleep with this awful disorder? I didn't mean to ramble. I just haven't talked to many people with RSD and it's nice to be "understood". I hope you have time to w ite. Take care and I hope you are better!!!! How long have you had RSD? Your treatments? Prognosis? Hope to talk/write to you soon:) Karyn

Parker Allen - 10/05/98 23:57:30
My URL:http://www.home.swbell.net/pallenjr/index.html
My Email:pallenjr@iname.com
Comments:
Great and wonderful page. Truly impressive.

10/05/98 11:07:19

Name: Bad Bunny My URL: Visit Me

My Email: Email Me

Comments:
Nice page. Very informative. Keep it up.

Barb - 10/01/98 07:55:49
My Email:stabburs@online.no
Comments:
Your homepage is great ! I`ve had RSD in my left arm for two years now (almost getting used to it..). Without pages like yours I wouldn't know about anybody else with RSD. THANKS !

Quin McWhirter - 09/29/98 20:31:32
My URL:http://members.aol.com/quinmarti
My Email:quinm@hotmail.com
Comments:
��Sue, thank you so much for your kind words in my guestbook and for the time you spent at my site. I would have responded sooner but have been out of the country the last three weeks and am pla ing catchup now. I really appreciate what you've done with your website and folks who see it may also be interested in a wonderful book my sister has written on finding grace in times of grief. There is a link to it on my homepage. I wish you God's blessi gs and all the best.
Quin

Sam - 09/29/98 02:23:21
My URL:http://geocities.datacellar.net/HotSprings/Villa/6415
My Email:littless@webtv.net
Comments:
You have a great site here. I'm sorry that it took so long for you to be diagnosed and for all the suffering you went through during your life. I suffer from fms. It took over six years for me to be diagnosed. It's hard for my husband and daughters to und rstand sometimes when I say I CAN'T do something. That's what I mean. I just can't. I am still adding to my pages but you are WELCOMED to come visit me. I'm just learning how to make gifts and awards and I would be honored if you would accept this award f r your pages You are the first to be offered this award. If you'd like you can visit me here: If the award doesn't work I'll e-mail it to you.

Amy - 09/24/98 18:02:37

Comments:
I also have this horrible rsd. I have had it for three years. I live in Wisconsin and there are no support groups for this here. I have been using my cousins computer to find info and to see if other people's lives are as bad as mine. To my surprise I a not alone!!!!

Sharon Shockey - 09/23/98 04:52:08
My Email:shar269@aol.com
Comments:
Love your site. I am new with R.S.D. only had it for 7 months. To sad right now to go on about this further. Its nice to know someone is out there to talk to about this. And if you want to talk you can e-mail me. Thanks so much. Sharon:)

Taryn Colo - 09/20/98 02:36:45
My Email:capulet24@hitmail.com
Comments:
hi, my name is Taryn. I am 16 and have had RSD since I was 10. It has always been in my left knee untill now it has now spread to my right hand and I am right handed. I would love to be e-mailed by anyone who wants to talk or wants a friend. -Taryn

pam - 09/16/98 17:37:27
My Email:iamanangel@webtv.net
Comments:
Hi, my name s Pam Bergey, my best reiend ha rsd, last night she had a stroke. the drs do not know if te rsd caused it or something else. she is having such a hard time with it. and the drs treat her really bad. when she has to go to the e.r. they act ike she is faking her pain, and i know you can not fake pain like hers.. the reason for my letter is i have been searching rsd sights so i can better understand what she is living with, and would like to know where i could find more info. she has been t eated so badly and i need to help her fight for proper treatment. thank yo so much for your time. pam bergey

Betsy Herman - 09/16/98 00:36:37
My URL:http://geocities.datacellar.net/SiliconValley/Heights/8619
My Email:greggmh@execpc.com
Comments:
Hi! I saw your address under your signature on the digest (while I was catching up after my hospital stay) and I thought I'd check it out. It's very good...any more information out there is a wonderful thing! Please take a look at my page if you have a chance. -Betsy

Joel - 09/15/98 15:55:48
My URL:http://members.aol.com/FNG01/
My Email:FNG01@aol.com
Comments:
Sue, Thanks so much for your visit and for your kind words. I believe RSD people always manage to seek out each other because of the difficulty in explaining the disease to others. A beacon of friendship and support always helps. Take care and good luc with your Web Site it looks very nice.

Alvina M. Perry - 09/15/98 15:09:10
My Email:alvina@vincennes.net
Comments:
Love your page !! I am so new at this computer. My son finally influenced enough to go on the internet. However, not knowing all I need to know about the computer, just awe struck at it all. I would really like to learn how to create a home page; as one comes with the internet service (10 meg) and I really need very remedial instructions. I admire your creativity; with beauty and inspiration, along with such caring concern for others as you deal with RSD. May I add you to our prayers and wish for you many of Heavenly Father's wonderful blessing today and always. Not all our healing will be on this side of the veil, however all the caring love and compassionate service performed on this side of the veil wil be multiplied in blessings on the other side of the veil, this I know to be true. A forever friend , Alvina

R1246 - 09/14/98 19:24:40
My Email:R1246@AOL.com
Comments:
Keep up the great work!

Genny Cox - 09/13/98 04:49:55
My Email:racox@infoave.net
Comments:
Hi, Your web page looks great. I am 35 years old and have had RSDS in left knee for two years and six months ago I started to have signs of RSDS in my right knee also. I have only gotten worse with time. I really need someone to talk with about this m nster called RSDS.

ROBIN EDWARDS - 09/13/98 02:06:42
My Email:ROBINEDWARDS@WEBTV.NET
Comments:
I READ YOUR GUESTBOOK. I FEEL BETTER KNOWING THAT THERE ARE PEOPLE OUT THERE THAT DO UNDERSTAND MY PAIN AND FRUSTRATION. IT IS TERRIBLE TO NOT BE ABLE TO PUT YOUR OWN SHOES ON OR GET UP FROM A TABLE WITHOUT HELP. I HAVE SUFFERED FROM RSD FOR OVER 4 YEA S. THIS WAS BROUGHT ON FROM A CAR ACCIDENT. I HAVE A GREAT DOCTOR BUT SOMETIMES I WONDER HOW MUCH THEY EVEN UNDERSTAND ABOUT THE DISEASE. I WOULD LOVE TO HEAR FROM ANYONE. HAVING EACH OTHER TO TALK TO SOMEHOW MAKES IT EASIER. GOD BLESS YOU AND GOD BLE S EVERYONE WHO IS SUFFERING FROM RSD. THANK YOU SO VERY MUCH FOR YOUR GUESTBOOK. IT TRULY IS A GOD SENT TO ME. ROBIN IN FLORIDA

Adina Monson - 09/10/98 04:07:25
My Email:monsona@tcel.com
Comments:
I am a sufferer of RSD and web pages like yours help me understand my disease. Thanks

Staci COHAN - 09/07/98 04:50:24
My Email:Tajit@webtv.net
Comments:
Thank you, for your page. I know people don't un- stand. They just think that It's a joke. My boyfriend,I thinks It's nothing and I just to complain. I only have support from my wonderful Doctor and my lawyer.I need a friend to know whats were going th ugh and I fear what it will be like in ten years from now. I know you would understand and I live PA. Please write me,,Staci-ann

- 09/07/98 01:53:45

Comments:

Chet - 09/03/98 00:29:36
My URL:http://members.aol.com/Beerbud35/index.html
My Email:Beerbud35@aol.com
Comments:
I really enjoyed my visit

rose - 09/02/98 01:37:47
My Email:vinceotis@aol.com
Comments:
i also have recently been diagnosed with this horrible thing called rsd. at times it is hard not to feel alone. people who don't have this can never understand the things we feel or go through. i have worked in the medical field for over 10 years as an iv technician. you would think this would help,but it doesn't. i wish sometimes i didn't know the things i do. i'm at the point to where i am accepting this i have alot of support, but i need someone who really understands.

Lana Longley - 09/01/98 16:30:10

Comments:
Your site is really peaceful...good job! Your graphics have a healing effect and I hope it provides the same for you. God Bless....

angelia - 08/31/98 14:01:15
My URL:http://geocities.datacellar.net/WestHollywood/1463
My Email:ang_hoper@hotmail.com
Comments:
Hey I checked out your page. Great work! From one RSD'er to another keep the hope... its all we have some days. :) angelia (aka hoper)

Susanne - 08/31/98 04:45:46
My URL:http://user.tninet.se/~aom987m/susengl/index.htm
My Email:pressfeldt@ebox.tninet.se
Comments:
Hi what an interesting site you have, i just entered so now I'm gonna look more Hugs Susanne

Barbara - 08/30/98 17:27:19
My Email:Irishkit39@aol.com
Comments:
I also have RSD. i got you web page address from Jimmy here on aol. Nice page ! i am working on a web page also . . . can I put a link to your page on mine? Barbara

Joe - 08/29/98 22:49:34
My URL:http://members.aol.com/Rnajk/Index.html
My Email:Rnajk@aol.com
Comments:
Sue, A very beutiful webpage, with alot of infomation about yourself and you put your true feelings in which is a plus. Your friend in RSD Joe

JoAnn - 08/28/98 02:31:01
My Email:jodan@early.com
Comments:
Hi Sue, your page is absolutely beautiful! Great job...especially like the flowers and music on the second page. Such peace and tranquility. Thanks, JoAnn

donna kennedy - 08/26/98 17:45:58
My Email:donnakennedy@hotmail.com
Comments:
I love your page Sue and I love you!!!!!!!! donna

Julie Head - 08/26/98 17:45:02
My Email:rrconn@ticz.com
Comments:
I really enjoyed your site. Thanks for sharing with me, I know you will be able to help several people get thru hard times with your comfort.

Jane - 08/21/98 04:27:46
My URL:http://www.geoccities.com/HotSprings/Villa/2802/
My Email:braun@ab.imag.net
Comments:
Suzanne, thank you for signing my guestbook! :) I have a gift for you....now if only this will work LOL Hugs, Jane

jimmy - 08/15/98 00:22:20
My Email:jimmyb4630@aol.com
Comments:
I really enjoyed your website and i thank you for all your hard work. I have RSD and i get lonely at times and i dont like that at all especially when i am in pain. I hate this RSD like i couldnt begin to tell you.

Keith - 08/09/98 10:35:49
My URL:http://www.rsdhope.org
My Email:roomblue@megalink.net
Comments:
Site looks great Suzanne. Very pretty and peaceful :)))

Tim and Dee - 08/08/98 17:04:07

Comments:

Joe Mazzafro (calvery) - 08/06/98 21:44:10
My URL:http://geocities.datacellar.net/~calvery
My Email:calvery@erols.com
Comments:
Beautiful site, wonderful cause and I know you will be helping many people in the months to come God Bless Joe Adoption World

RED - 08/04/98 13:27:12
My Email:nightnoise@provide.net
Comments:
Nice-lookiing graphics! I hope I can contribute something useful to such a well-crafted site!

Debbie - 08/04/98 02:16:30
My Email:dkrepline@lsol.net
Comments:
Sue: I thought you did a beautiful job on your web site and it sure is nice to know that there are very nice people out there in this RSD world that can be there for each other. I also share the same pain you do, now having RSD for 4+ years. I sure will b back to see more. Thanks again for this beautiful site.

tonie Brundage - 08/03/98 13:52:23
My Email:tonifc@primenet.com
Comments:
great page..Do you have icq? My # is 6671902. Please contact me so I can give you a kink to my sister's page..

Cherilynne - 08/03/98 09:03:26
My URL:http://www.freeyellow.com/members2/cherbear19/
My Email:cherbear19@hotmail.com
Comments:
Sue, your page is lovely and I enjoyed visiting here. I will be back often! For a long time I thought I was the only one out here, most likely losing my mind, but certainly NOT SICK! As bad as it is, at least I know now that RSD is real. FMS is real. And I am not alone. Sad that there are so many of us, but what a relief to find people who understand the pain and embarrassment when you find yourself sitting on the side of the bed (if you are lucky enough to get to that position) with legs and arms us less, racked with pain and unwilling to move any further, and you have to ask for help even to stand. But then, I thank God daily that I am still able to stand and walk and be almost 'normal'. I am in year 5 of the monster and so far have been so very l cky. Would love to hear from any of you! Sue, I will be back often. Your page is great!

Diane - 08/03/98 05:14:19
My URL:http://geocities.datacellar.net/Heartland/Meadows/7376
My Email:dide@erols.com
Comments:
Sue, Great Site!!! What a Wonderful place to visit. I will come back again to visit this Beautiful page and I love your Lake Applet and everything. Good Luck. I have RSD to and I understand what you are saying......

karen - 08/03/98 01:46:05
My URL:http://members.aol.com/dkega/rsdawareness.html
My Email:dkega
Comments:
Looks Great Sue, You are learning a lot on building your site! Have a great day! Karen

Lea G. - 08/03/98 00:59:30
My Email:lea11@home.com
Comments:
Your home page is wonderful, Sue! The music is very nice, and the beautiful picture of the tree and water made me feel great. Keep it up! Your friend and fellow rsd-er, Lea

Jeannie Novack - 08/03/98 00:28:21
My Email:novack5@ptd.net
Comments:
Sue, I Love the postcard!! I saw that one on one of the sites but I couldn't retrive it. Good Luck with your home page. I sure think you did a great job on it! Love Jeannie

Jill Quigg - 08/02/98 07:09:14
My Email:jmq@bellsouth.net
Comments:
I think you have a great web site! I only wish I had friends that understood RSD when I was slowley learning about this devestating disease. Everyone feels so alone and isolated in pain, and when they find a web site like this they know they are no long r alone. Thanks for giving to all of us that hurt daily and deal with daily obsticales. You give us a place to reach out to one another and learn all we can to deal with our pain. God Bless You! Jill, in Tennesse

Cheryl K - 08/01/98 14:57:55
My URL:http://geocities.datacellar.net/Heartland/Meadows/4783
My Email:tjslinks@geocities.com
Comments:
Just to let you know that I plan to add you to my medical links. Hope that is okay with you.

Squirrely - 07/30/98 14:11:05
My URL:http://geocities.datacellar.net/HotSprings/Spa/4525
My Email:squirrely@earthlink.net
Comments:
Hi! Just wanted to let you know I thought you did a great job with your site. :-)

JoAnn - 07/29/98 02:13:57
My Email:jodan@early.com
Comments:
Hi there! VERY NICE! And, I really like the "friends" format here!

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