We would like to share with you what People are saying

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This all looks very interesting. I hope you can reach your goal, as your centers are sorely needed. I am Dr.S. G. I was diagnosed with CRPS in my right foot in Summer, 2008. Since then, it has spread to all four limbs, several areas on my torso and head. I am 49 years old, and until CRPS forced me to stop in February of this year, I was a scientist doing contract research for the United States Government. Most definitely, CRPS has dramatically changed my life, but certainly not for the better.

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I thank you all for this web site we need a voice and we need to have this terrible disease spoken about around the globe because it has changed my life some kind of terrible, I was not diagnosed until 10 months into this disease and had never heard of it so the word definitely needs to be heard.                                               

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Wow, this website is fabulous, its great to see a website that is asking for so much feedback from the RSD/CRPS sufferers. I believe that we need to put out the fire. Thank you for putting the information out there.

X0X
K

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I have had RSD for 13 years. I have gone to so many doctors & specialists I can't even count them all. RSD is a life changing disease. The way I cope is dwelling on the positive, exercising , and faith. I may have RSD, but I won't let RSD have me. I will fight the battle and never give up. It is not easy, but you can't quit. Keep researching, keep hanging in there. Up until 2 mos. ago I knew I was dying. Now I have a new doctor and I have improved so much, I finally feel I'm going to make it. There is hope. Never, ever give up.

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hi everyone, I'm from Minnesota, land of 10,000 lakes yet they don't know nothing about RSD.. i have been trying to spread awareness in my town since this year. i waited for two years because for the past two years i was fighting the doctors, because they thought the reason why i was hurting so much was because of depression. i saw three different doctors in my town alone and they all said nothing was wrong with me. but i didn't stop and i kept on fighting until i got the right treatment i deserved. it's still not over with, but at least i have some doctors that are willing to help me the best they can.
since this has all happened to me I'm not just fighting for my rights anymore, I'm fighting for every RSDer out in the world today. We deserve better treatment not only from the doctors but from our families, nurses, public and government. I'm gonna keep on fighting the fight until OUR VOICES HAVE BEEN HEARD! and i keep telling others that they are NEVER GONNA BE ALONE. they'll always have a friend in me, no matter, i will never leave anyone fight this battle alone, for i know it's hard, painful, and lonely to do that.

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I have suffered with RSD/CRPS for 8 years(I got it from a car accident -- someone fell asleep while driving and rear ended me) and I am always looking for new websites with good info on this awful disease. This past 8 years has been hell, and it's only getting worse because the RSD is spreading and getting worse. I'm sure that I'm not alone in my wish for a decent treatment or, better yet, a cure.

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I have RSD due an accident at work replacing a window. I severed my artery and cut through my tendon that controls my thumb on my left hand. Life has not been easy since 9/12/08 at exactly 8:00 am. I almost lost my life but I'm thankful to be breathing although it came at a high price called RSD

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AWESOME WEBSITE!!!!!!!!!!!!
I have had RSD for 6 years due to a cut nerve during a knee surgery. I had 4 more surgeries as well as a Ketamine infusion directed by DR. S in NY, but it went bad after 2 days so it had to be stopped. I will be seeing DR. K in August.

May God Be With You,
P,

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I got rsd from a 2nd carpal tunnel surgery, and it is now going on 8 years. We need all the help we can get!!!

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Id love to help. Ive had this for years and decided to fight fire with fire. I race walk every day now and completed my 1st marathon in 2007, I intend to do the Seattle marathon this year. Pretty good for someone that was wheelchair bound and feeling hopeless a few years ago, I want to let others out there know you can have hope and work through the pain its not always easy but the best things never are!!!

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I suffer from r.s.d. just since Aug. of 2008. I, like everyone around me had never heard of such a life changing horrible, devastating disease. I want to be heard, and the world to listen, and be educated, and to help find a cure for us! God bless, K

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I suffer from RSD-CRPS and have experienced the frustrations you speck about.

My insurance company had been fair for many years but now wants a evaluation my an "Independent" Dr. I suspect it is not for my benefit. Is there a way to evaluate companies, IME. "Independent Medical Consultants, Inc."

Thank you for your good work.  

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RSD & CHARCOT FOOT HAVE DISRUPTED MY LIFE, HARD TO WALK, , CAN'T WORK, CONSTANT PAIN MED'S & INJECTIONS WHICH REALLY DO NOT HELP.. SLEEPLESS NIGHTS.. ALL I HAVE TO SAY IS THAT IT IS TERRIBLE.. NEVER ENDING PAIN.. 

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I am a 27 year old teacher who has been suffering from this disease for over 2 years. I had a routine surgery and that day I knew that there was something drastically wrong. I can no longer do the things I want to, because it is in my foot. I can't find a treatment that works. I would love to find more information to help myself and others fight this monster. Thank you for your the time, energy, effort, and prayers you have put in to help all of us suffering.

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I contracted RSD after I shattered my leg slipping on ice (2/6/07). I had to have revision surgery after the first surgeon put my leg back together "wrong". I had bone grafts, new hardware, a bone growing material, etc. That developed a necrosis and I had to have skin grafts done. After all that, instead of my leg finally healing and feeling better, the pain kept increasing. In May, 2008 I was diagnosed with RSD. I have had lumbar sympathetic blocks, bier blocks, pain meds, scs, stellate ganglion blocks (my RSD spread to my left arm in April 2009) and so many other procedures I can't even list them all.

I am so thankful for this site. It is great and very well organized and easy to navigate. I want to be on your mailing list. Thank you.

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Hi, I am in my 9th year with RSD/CRPS, and think you all are on the right track. I am not sure if I have much to offer, but do have some experience in the marketing field and also trained as a network admin. Before RSD I worked at a small casino as the mktg dir, and also as the network admin.

I would love to help out in your goals, so please feel free to contact me anytime.
Sincerely
A

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Best wishes & a productive positive day in assisting this cause Warm regards,
G

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I have had RSD since 2006 when I crushed my wrist in a snowboarding accident. It then spread to my left foot after a knee replacement. I was 37 at the time I was diagnosed.

My hand surgeon had not caught the disease even though he was known as one of the premier hand surgeons in the world. It was my brother who is a surgical technician who saw I had RSD and told me to seek help immediately.

This has changed my life. I am still working, have 4 children 24, 22, 19 and 17. My husband is the children  step father and has stood by me through this, but it has been very very difficult to raise these children and work full-time while suffering from this disease.

Thank you for all you do for this cause. I would love to hear about alternative treatments, simple solutions for pain relief or ideas to help with anxiety associated with the chronic pain

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Thank you for the good works your organization does for us that truly suffer pain I wouldn't wish on my worst enemy.

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Today was the first time that I went onto this site and have been very impressed. Your site is now on my "Favorites" listing and I'm sure that I will be stopping back frequently.

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Thank You for following me on Twitter, I have RSD and frankly no one understands. I look okay and because I work hard to do what I need to do, people think I am just whining when I complain that I just can't do something or that I am in too much pain. 

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Someone said a CRPS sufferer will know the exact time their life changed. Mine changed in February, 2009. when I broke a toe. The pain went away briefly, but the selling never did. Then it started to burn and itch although there was no rash. Then in April I was in hospital and caught the flu virus. The first thing I noticed was the intense pain in my body, in most of my joints. The pain never went away and it is now July. I was diagnosed with CRPS a few weeks ago. I was devastated. I am blessed my Dr knows about CRPS and has already referred me to a specialist. Others aren't so blessed to have someone who believes them - I have talked to other sufferers online. My pain has settled in my shoulders, arms and hands. My right side is worst. We have had to adjust our lives a lot. My husband now has to do a lot of the things I took for granted - like watering my garden or pouring me coffee. Even lifting a coffee cup can cause excruciating pain and crocheting can be agonizing. I don't know what the future holds for me. I know I am blessed to have a wonderful husband who believes me and understands and also to have God who is my glue holding my world together. 

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I had carpel tunnel surgery in mar. of 09. Almost immediately, my recovery wasn't what the doctor thought it should be. I'm thankful that he suspected crps at about 3 weeks.
Now it's the end of July and I've been through 6 nerve block injections. My recovery isn't near 100% but it is better. My employer is holding my job for about another month and if I can't be released to lift 50 lbs., then they'll let me go. It's definitely been a "one day at a time" journey. I go to physical therapy twice a week and lift light weights at home. I'm trying to push myself past the pain
Thanks for letting me share a bit. 

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I should have mentioned that I am an RSDS sufferer and was diagnosed in 2003 after a "messy" back surgery. My life has been greatly altered, and I believe my story needs to be heard. Please count on me to help put out the fire of RSDS not only for myself, but for the many, many Americans that have been diagnosed with this disease!

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Wish all peace and ability to cope.

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more needs to get out about this awful thing we live with each and every day

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I was diagnosed after being partially paralyzed of left leg in 87. 8 years later I had the new test called MRI & they found herniated disks, the mylagram didn't show anything.
I was told it was all in my head, I was trying to get out of working because I had an abusive home life, I was a non drinking alcoholic, I was just a crazy prescription junkie.

I HATE Narcotics!!! I use many topical pain relievers I can, so I don't have to use pain meds any more than I have to. I am fortunate that my RSD isn't as bad as many I have met online that have it.

thank you for this site COUNT ME IN!!
I am a leather smith & make gem stone jewelry 

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Love the site! Thank you for all you do!

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I'm 20 years old and have RSD in my left leg. It happened Nov. 10 2008. I also have autonomic dysfunction which they say also has to do with my sympathetic Nervous System. 

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Thank you for this web site. I am a sufferer of RSD type 2. My whole world has changed for the worst for now but iI will rebound. I have found our elected officials just do not want to talk about it. 

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Thank you so much for this site! I am the mother of a RSD sufferer, you have made my daughters story the spotlight on your Wall of Heroes...Thank you so much! This is not a very common disease in children so it was very difficult to get the diagnosis for her. The doctor told us that once she's better she should be fine and not at risk for getting it again, after reading and researching, I'm more aware that this is not something that will be gone forever. I will definitely be more aware if she should get any further injuries that she may get flare ups. You can read her story on the WALL OF HEROES.

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In my story I forgot to say I can barely walk. My heel on RSD foot has not gone down, I have tippie toed almost 3 years.
Sitting is painful, I can not stand longer then 2 minutes, can't hobble to far.
And if pain is bad I can't make it down the stairs to go anywhere.
So I rarely leave the apt.    

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I have had RSD for almost 20 years now. I am glad that I have come across your website. It is nice to finally be seeing more people, sites and medical staff who are more aware of RSD and looking for a cure and help for others. When I got RSD it was in a time when nobody had heard of it and I am glad that is changing so it will help people who have been recently diagnosed so they are not alone like I was.

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Hi I have RSD i got it from carpal tunnel surgery in Sept 2008 it has very much changed my life just got a dx yesterday it has spread to both arms &legs had to come out of work and workers comp.is a pain to work with i enjoy this web site it makes you not fell so along although i have a great hubby of 30 years 3 great daughters and 2 grand daughters they make life worth living and with gods help I'll make it gods bless all 

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Hello all, my name is D*** & I have been suffering from CRPS for approx. 7-8 years, although I wasn't diagnosed until 2005. It is the result of breaking-spraining & dislocating my ankle in 1999. I guess my "pet peeve" is when people say or think that I look well, how can I have a disease so terrible. I often think if they only knew, perhaps to spend just 1 hour in my body then they would, (although I wouldn't wish this on my worst of enemies!). Anyway, I'm glad that there is a place for people like me to go & share or feelings & yes to be counted!
Sincerely,
D

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This is a great site. You guys have a great thing going here! Thank god for the internet.Anything that I can do from Canada let me know.

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I am an RSD sufferer and I want to do my part in helping find ways to gain recognition and help in any and all areas. As small a role as it maybe. I do believe that our voices in numbers make a stronger impact. If I sit and sing about this alone I will not be heard but if 200 people are singing we will be heard. 

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Hello; 
 
My name is S***. I suffer from a disabling rare chronic pain disorder Reflex Sympathetic Dystrophy (RSD/CRPS). I was injured with a torn rotator cuff in 2006, while working at a domestic violence shelter. The McGill Pain Index rates RSD/CRPS, more painful than cancer, child birth or amputation. If treatment for RSD would have been approached in the first 6 months to a year aggressively, remission could have prevented this. But most General Practitioners are not aware of the symptoms, as my doctor didn't understand that level off pain & swelling. Endless testing and referrals ticked away at precious time.Then my health insurance policy was canceled by my employer, no COBRA. Over 70 thousand dollars in tests have been done by Workman's Compensation Insurance, with no proper treatment.
 
This throbbing, stabbing burning pain and immobility is unrelenting. Without pain management, I shake, moan and cry EVERY day. I can no longer fully use my left arm and the disorder has spread into my left leg. The last 2 months, pain struck in the right shoulder. This mine field of pain has tormented me, my family and friends as they watch helplessly. I ware a therapeutic arm sling for travel and now a wheel chair. I was injured at work and have battled with workman's compensation insurance for almost 3 years. 
 
Many would say, systems are in place for this woman, SSDI, SSI, and Workman's Compensation. 
 
SSDI (PENDING), After 2 years. The judge said RSD/CRPS doesn't spread! Then yelled "Enough!" when my lawyer tried to introduce clinical evidence to the contrary. 
SSI (PENDING SSDI) After 1 year. 
WORK. COMP (MORE EVA  

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Thank you so much for this site! I am the mother of a RSD sufferer, you have made my daughters story the spotlight on your Wall of Heroes...Thank you so much! This is not a very common disease in children so it was very difficult to get the diagnosis for her. The doctor told us that once she's better she should be fine and not at risk for getting it again, after reading and researching, I'm more aware that this is not something that will be gone forever. I will definitely be more aware if she should get any further injuries that she may get flare ups. You can read her story on the WALL OF HEROES.

 Technical Test of website