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personal stories and notes from our correspondents
Goody - Pennsylvania
I have RSD and have had it since 6/5/99. I broke my wrist and it took 25 XR's and 5 settings before thay got it set right. By this time the shot they had given me was starting to wear off so I could feel everything they were doing. In Aug when the cast came off I knew it was not right. All the time I had the cast on I knew something was wrong but they would not listen to me, even when they changed the cast they could not see the problem. Anyway in Aug. I went to a hand doctor and just looked at it and told me I had RSD. I had 15 nerve blocks but they did not work so then I went on meds. I still have pain 24/7 but I can tolerate it now.
By the way - I am from Pa. and married and 58 years old
Malia - Hawaii
Hi my name is Malia, my story starts in 1985 I was at work as a bartender in Hawaii. It was valentines night and it was so busy we were all running around crazy, well to make a long story short, I fell in the kitchen of this restaurant and my nightmare began. I used to be very active and I was a damn good bartender, but after that night my life was turned upside down. I started having horrific pain in my left arm, neck and chest; at times the pain was so bad I thought I was having a heart attack. Well, I went to several doctors who said it was everything from bruised ribs to muscle strain and then they found out I had a herniated disc in my neck. They operated said I was fixed and that was that. They were wrong... I got worse and the pain was very bad and spreading. Since I was on workers comp they just "knew" I was faking so they sent me to their doctor and he agreed with me - that pissed workers comp off! He said I had thoracic outlet and needed to go to UCLA to see a doctor there. Well three operations later I was still having trouble; the doctor at UCLA even gave up on me and sent me to another doctor at Baylor in Dallas, who did 2 more operations and major ones. By 91 I was still no better - in fact worse. So somewhere in my chart this doctor put down RSD and never told me nothing about. He just sent me to a pain doctor who ended losing his license because he was so bad. I finally found a doctor in Dallas who knew all about RSD. After a year or so on tons of meds and injections and a stimulater, I am now on my 2nd morphine pump. It takes care of the pain pretty well, but I still have days that are unbearable. At first my doctor was great and seemed like he wanted to help but now he hardly listens to me when I go to have my pump filled. I take breakthru meds and I think I have built up a tolerance to them but he just fills my pump and gives me the same med. I have had trouble with heart palpitations, skin discolorations - you name it. I got that real bad flu that is going around and I had to go to the ER and the doctor looked at my medication and was real rude and told me he never heard of RSD. Sometimes I just get so depressed about it all. Thanks for listening.
Leslie Williams
First of all I would like to say I am thankful for the site. It has
given me options for alternative treatments. I have had 18 ganglion
nerve blocks, use a TENS unit, had surgery to reroute the nerves in
my arm. The next suggestion was to remove the sympathetic nerve. I am
tired of the invasive treatments. I am still working, but it is a challenge
every day to get out of bed, I am do not know how to quit, so I will
keep on working until I retire : )
I am compelled to write due to the nature of my injury. My arm was injured
due to an IV infiltration during a hospital stay. The result was RSD
and compartmental syndrome. I do not care what they call it, I have
been in pain ever since. My concern is that IV infiltrations are common
and cause a variety of injuries, RSD is one injury that usually goes
undiagnosed due to the unwillingness to accept responsibility by the
hospital. It is hard to prove that the problem was caused by the IV
infiltration. I was very persistent and did not give up until I was
given the same diagnosis from 3 doctors. My symptom's are typical with
RSD symptoms, so I will accept that diagnosis and will continue to seek
out alternative therapies. Just wanted people to know, when you or someone
you know has to have any type of IV therapy, watch it like a hawk! If
an IV infiltration occurs severe enough to cause significant swelling,
ask about a fasciotomy. It could save your arm.
Tammie - California
Hello everyone, my name is Tammie, I live in California. In the year 2000 I had carpal tunnel surgery due to a work injury. After my surgery, I had PT and things seem to get worse. I expected to be off work for 3 months at the most but did someone else have other plans for me. After telling my doctor that my hand (right) hurt more now than it did when I went in for the surgery, he keep telling me the PT would help. Why as a doctor he couldn't see the color changes and temp changes in my hand, I' ll never understand. Finally I got fed up and told him he had to do something and his response was Quit acting like a baby and use you hand. After that appt, I went to my work and told them they better do something, at this point I had not retained a lawyer.... Well, they sent me to a hand specialist and as soon as he seen me he said it's RSD. I said what is that? He explained and said not to worry, you'll have it for a few months and then you'll be all better. Was he ever so wrong. After that, he had my PT changed and sent me right back to work. Can you believe it? I'm sure you all can. He said he'd see me in a month...I didn't know how important it was to get to pain management...I knew nothing. Well, after 2 and a half weeks at work in such bad pain I finally called a lawyer and after that he sent me to a doctor who then sent me to the people I needed to see. Pain management, psych, had many test ran on me. I guess you can say I was lucky because the bone scan that was done showed signs of RSD. It's been 4 yrs. now and my case still is not settled. It's like I'm in limbo wondering what's going to happen with the rest of my life. I am in voc rehab, which is good but it also is bad because the pain tends to make me have more bad days than good so trying to learn and study while in such bad pain is really hard. But I'm trying. I've come along way from how I use to be. For a person who never ever thought of committing suicide, to always thinking about it... and then go to sometimes having it in my thoughts is a whole lot better. I wish they would hurry up and find a cure for this. I am tried of taking meds everyday like clock work. I'm sick of being sick!!!!!!!! That's the best way I can explain how I feel. Thanks for hearing me out. If anyone would like to talk... please feel free to write at ipimphim143@aol.com Always beside you all, take care and God bless.
Michele
I have a story kind of like Amanda's. I was working May of 2001 and my boss had been putting a shelving unit together for me. The dividers were 12 inch x 14 inch and 1 inch thick and there were 5 of them. He had put all five of the dividers on top of a bookcase about 4 feet tall, and they were laying on top of papers and stuff. While I went through his office these 5 boards fell from the top of the bookcase and landed on my right ankle. I've been to a lot of doctors and some don't believe in the pain and some are saying it's RSD. This thing has made me so depressed over my life that I have lost. We're just getting to the part where I might finally get treatment for my depression this has caused. That's about all I have to say for now. I was just having one of those bad painful sleepless nights and thought I'd see what's on the web. It's pretty lonely when you have RSD.